[Senate Hearing 113-]
[From the U.S. Government Publishing Office]
DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION, AND
RELATED AGENCIES APPROPRIATIONS FOR FISCAL YEAR 2014
----------
U.S. Senate,
Subcommittee of the Committee on Appropriations,
Washington, DC.
[Clerk's note.--The subcommittee was unable to hold
hearings on some departmental and all nondepartmental
witnesses. The statements and letters of those submitting
written testimony are as follows:]
DEPARTMENTAL WITNESSES
RAILROAD RETIREMENT BOARD
Prepared Statement of Michael S. Schwartz, Chairman of the Board;
Walter A. Barrows, Labor Member of the Board; and Jerome F. Kever,
Management Member of the Board
Mr. Chairman and members of the committee: We are pleased to
present the following information to support the Railroad Retirement
Board's (RRB) fiscal year 2014 budget request of $111,739,000 for our
retirement, unemployment and other programs.
The RRB administers comprehensive retirement/survivor and
unemployment/sickness insurance benefit programs for railroad workers
and their families under the Railroad Retirement and Railroad
Unemployment Insurance Acts. The RRB also has administrative
responsibilities under the Social Security Act for certain benefit
payments and Medicare coverage for railroad workers. The RRB has also
administered special economic recovery payments and extended
unemployment benefits under the American Recovery and Reinvestment Act
of 2009 (Public Law 111-5) and extended unemployment benefits under the
Worker, Homeownership, and Business Assistance Act of 2009 (Public Law
111-92). More recently, we have administered extended unemployment
benefits under the Tax Relief, Unemployment Insurance Reauthorization,
and Job Creation Act of 2010 (Public Law 111-312), the Temporary
Payroll Tax Cut Continuation Act of 2011 (Public Law 112-78), the
Middle Class Tax Relief and Job Creation Act of 2012 (Public Law 112-
96) and the American Taxpayer Relief Act of 2012 (Public Law 112-240).
During fiscal year 2012, the RRB paid $11.4 billion, net of
recoveries, in retirement/survivor benefits to about 573,000
beneficiaries. We also paid $76 million in net unemployment/sickness
insurance benefits to about 26,000 claimants. Temporary extended
unemployment benefits paid were $7.2 million. In addition, the RRB paid
benefits on behalf of the Social Security Administration amounting to
$1.4 billion to about 114,000 beneficiaries.
PROPOSED FUNDING FOR AGENCY ADMINISTRATION
The President's proposed budget would provide $111,739,000 for
agency operations, which would enable us to maintain a staffing level
of 860 full-time equivalent staff years (FTEs) in 2014. The proposed
budget would also provide $2,860,500 for information technology (IT)
investments. This includes $2,100,000 for the final phase of our system
processing for excess earnings data (SPEED) application. The remaining
$760,500 would be used for other technology investments in network
operations, and e-Government. In addition, the proposed budget would
provide $600,000 for a Voice over the Internet Protocol system that
provides a significant return on investment to our communications
infrastructure in the areas of day-to-day operations and cost
containment.
AGENCY STAFFING
The RRB's dedicated and experienced workforce is the foundation for
our tradition of excellence in customer service and satisfaction. Like
many Federal agencies, however, the RRB has a number of employees at or
near retirement age. About 65 percent of our employees have 20 or more
years of service, and over 36 percent of our current workforce will be
eligible for retirement by fiscal year 2014. To help prepare for the
expected staff turnover in the near future, we are placing increased
emphasis on modernization strategies to convert manual workloads to
automated and strategic management of human capital. Our human capital
plans provide for employee support and knowledge transfer, which will
enable the RRB to continue achieving its mission. In addition, with the
agency's formal human capital plan, succession plan and various action
plans in place, we are ensuring that succession management supports a
systematic approach to ensuring a continuous supply of the best talent
through helping individuals develop to their full potential.
In connection with these workforce planning efforts, the
President's budget request includes a legislative proposal to enable
the RRB to utilize various hiring authorities available to other
Federal agencies. Section 7(b)(9) of the Railroad Retirement Act
contains language requiring that all employees of the RRB, except for
one assistant for each Board Member, must be hired under the
competitive civil service. We propose to eliminate this requirement,
thereby enabling the RRB to use various hiring authorities offered by
the Office of Personnel Management. Also, our budget request includes a
legislative proposal to clarify the authority of the Railroad
Retirement Board to hire attorneys through competitive civil service.
INFORMATION TECHNOLOGY IMPROVEMENTS
We are actively pursuing further automation and modernization of
the RRB's various processing systems to support the agency's mission to
administer benefit programs for railroad workers and their families. In
fiscal year 2014, funding is included for contractor support to
complete the full design of the System Processing Excess Earnings Data
(SPEED) application. The SPEED application, started in 2006, is being
built in phases to accommodate complex transactions and system
interconnections. Once completed, SPEED will automate time consuming
and complex manual processing of annuity adjustments resulting from
post retirement work/earnings by employee and spouse annuitants. We
expect automation of this workload to reduce staffing requirements and
reduce improper payments through increased timeliness in handling.
OTHER REQUESTED FUNDING
The President's proposed budget includes $39 million to fund the
continuing phase-out of vested dual benefits, plus a 2 percent
contingency reserve, $780,000, which ``shall be available proportional
to the amount by which the product of recipients and the average
benefit received exceeds the amount available for payment of vested
dual benefits.'' In addition, the President's proposed budget includes
$150,000 for interest related to uncashed railroad retirement checks.
FINANCIAL STATUS OF THE TRUST FUNDS
Railroad Retirement Accounts.--The RRB continues to coordinate its
activities with the National Railroad Retirement Investment Trust
(Trust), which was established by the Railroad Retirement and
Survivors' Improvement Act of 2001 (RRSIA) to manage and invest
railroad retirement assets. Pursuant to the RRSIA, the RRB has
transferred a total of $21.276 billion to the Trust. All of these
transfers were made in fiscal years 2002 through 2004. The Trust has
invested the transferred funds, and the results of these investments
are reported to the RRB and posted periodically on the RRB's website.
The net asset value of Trust-managed assets on September 30, 2012, was
approximately $23.6 billion, an increase of almost $1.5 billion from
the previous year. Through December 2012, the Trust had transferred
approximately $13.9 billion to the Railroad Retirement Board for
payment of railroad retirement benefits.
In June 2012, we released the report on the railroad retirement
system required by Sections 15 and 22 of the Railroad Retirement Act of
1974, and Section 502 of the Railroad Retirement Solvency Act of 1983.
The 25th Actuarial Valuation addressed the 75-year period 2011-2085,
and included projections of the status of the retirement trust funds
under three employment assumptions. These indicated that barring a
sudden, unanticipated, large decrease in railroad employment or
substantial investment losses, the railroad retirement system would
experience no cash flow problems for the next 23 years. Even under the
most pessimistic assumption, the cash flow problems would not occur
until the year 2035. The report did not recommend any change in the
rate of tax imposed by current law on employers and employees.
Railroad Unemployment Insurance Account.--The RRB's latest annual
report on the financial status of the railroad unemployment insurance
system was issued in June 2012. The report indicated that even as
maximum daily benefit rates rise 44 percent (from $66 to $95) from 2011
to 2022, experience-based contribution rates are expected to keep the
unemployment insurance system solvent, except for small, short-term
cash-flow problems in 2015, under the most pessimistic assumption.
However, projections show quick repayment of any loans by the end of
fiscal year 2016.
Unemployment levels are the single most significant factor
affecting the financial status of the railroad unemployment insurance
system. However, the system's experience-rating provisions, which
adjust contribution rates for changing benefit levels, and its
surcharge trigger for maintaining a minimum balance, help to ensure
financial stability in the event of adverse economic conditions. No
financing changes were recommended at this time by the report.
Thank you for your consideration of our budget request. We will be
happy to provide further information in response to any questions you
may have.
______
OFFICE OF INSPECTOR GENERAL
Prepared Statement of Martin J. Dickman, Inspector General
Mr. Chairman and members of the subcommittee: My name is Martin J.
Dickman, and I am the Inspector General for the Railroad Retirement
Board. I would like to thank you, Mr. Chairman, and the members of the
subcommittee for your continued support of the Office of Inspector
General.
BUDGET REQUEST
The President's proposed budget for fiscal year 2014 would provide
$8,877,000 to the Office of Inspector General (OIG) to ensure the
continuation of the OIG's independent oversight of the Railroad
Retirement Board (RRB). During fiscal year 2014, the OIG will focus on
areas affecting program performance; the efficiency and effectiveness
of agency operations; and areas of potential fraud, waste and abuse.
OPERATIONAL COMPONENTS
The OIG has three operational components: the immediate Office of
the Inspector General, the Office of Audit (OA), and the Office of
Investigations (OI). The OIG conducts operations from several
locations: the RRB's headquarters in Chicago, Illinois; an
investigative field office in Philadelphia, Pennsylvania; and five
domicile investigative offices located in Virginia, Texas, California,
Florida, and New York. These domicile offices provide more effective
and efficient coordination with other Inspector General offices and
traditional law enforcement agencies, with which the OIG works joint
investigations.
OFFICE OF AUDIT
The mission of the Office of Audit is to promote economy,
efficiency, and effectiveness in the administration of RRB programs and
detect and prevent fraud and abuse in such programs. To accomplish its
mission, OA conducts financial, performance, and compliance audits and
evaluations of RRB programs. In addition, OA develops the OIG's
response to audit-related requirements and requests for information.
During fiscal year 2014, OA will focus on areas affecting program
performance; the efficiency and effectiveness of agency operations; and
areas of potential fraud, waste, and abuse. OA will continue its
emphasis on long-term systemic problems and solutions, and will address
major issues that affect the RRB's service to rail beneficiaries and
their families. OA has identified four broad areas of potential audit
coverage: Financial Accountability; Railroad Retirement Act & Railroad
Unemployment Insurance Act Benefit Program Operations; Railroad
Medicare Program Operations; and Security, Privacy, and Information
Management. OA must also accomplish the following mandated activities
with its own staff: Audit of the RRB's financial statements pursuant to
the requirements of the Accountability of Tax Dollars Act of 2002,
evaluation of information security pursuant to the Federal Information
Security Management Act (FISMA), and an audit of the RRB's compliance
with the Improper Payments Elimination and Recovery Act of 2010.
During fiscal year 2014, OA will complete the audit of the RRB's
fiscal year 2013 financial statements and begin its audit of the
agency's fiscal year 2014 financial statements. OA contracts with a
consulting actuary for technical assistance in auditing the RRB's
``Statement of Social Insurance'', which became basic financial
information effective in fiscal year 2006. In addition to performing
the annual evaluation of information security, OA also conducts audits
of individual computer application systems which are required to
support the annual FISMA evaluation. Our work in this area is targeted
toward the identification and elimination of security deficiencies and
system vulnerabilities, including controls over sensitive personally
identifiable information.
OA undertakes additional projects with the objective of allocating
available audit resources to areas in which they will have the greatest
value. In making that determination, OA considers staff availability,
current trends in management, Congressional and Presidential concerns.
OFFICE OF INVESTIGATIONS
The Office of Investigations (OI) focuses its efforts on
identifying, investigating, and presenting cases for prosecution,
throughout the United States, concerning fraud in RRB benefit programs.
OI conducts investigations relating to the fraudulent receipt of RRB
disability, unemployment, sickness, and retirement/survivor benefits.
OI investigates railroad employers and unions when there is an
indication that they have submitted false reports to the RRB. OI also
conducts investigations involving fraudulent claims submitted to the
Railroad Medicare Program. These investigative efforts can result in
criminal convictions, administrative sanctions, civil penalties, and
the recovery of program benefit funds.
OI INVESTIGATIVE RESULTS FOR FISCAL YEAR 2012
------------------------------------------------------------------------
Indictments/ Recoveries/
Civil Judgments Informations Convictions Receivables
------------------------------------------------------------------------
26 106 85 \1\ $77,405,487
------------------------------------------------------------------------
\1\ This total includes the results of joint investigations with other
agencies.
OI anticipates an ongoing caseload of about 450 investigations in
fiscal year 2014. During fiscal year 2012, OI opened 168 new cases and
closed 258. At present, OI has cases open in 48 States, the District of
Columbia, and Canada with estimated fraud losses of nearly $124
million. Disability fraud cases represent the largest portion of Ol's
total caseload. These cases involve more complicated schemes and often
result in the recovery of substantial amounts for the RRB's trust
funds. They also require considerable resources such as travel by
special agents to conduct surveillance, numerous witness interviews,
and more sophisticated investigative techniques. Additionally, these
fraud investigations are extremely document-intensive and require
forensic financial analysis.
Of particular significance is an ongoing disability fraud
investigation in New York. To date, 32 individuals have been indicted
(23 have pled guilty), and OI agents will likely have to spend a
substantial amount of time traveling to New York for continuing
investigations and trial preparation in fiscal year 2014.
During fiscal year 2014, OI will continue to coordinate its efforts
with agency program managers to address vulnerabilities in benefit
programs that allow fraudulent activity to occur and will recommend
changes to ensure program integrity. OI plans to continue proactive
projects to identify fraud matters that are not detected through the
agency's program policing mechanisms.
CONCLUSION
In fiscal year 2014, the OIG will continue to focus its resources
on the review and improvement of RRB operations and will conduct
activities to ensure the integrity of the agency's trust funds. This
office will continue to work with agency officials to ensure the agency
is providing quality service to railroad workers and their families.
The OIG will also aggressively pursue all individuals who engage in
activities to fraudulently receive RRB funds. The OIG will continue to
keep the subcommittee and other members of Congress informed of any
agency operational problems or deficiencies. The OIG sincerely
appreciates its cooperative relationship with the agency and the
ongoing assistance extended to its staff during the performance of
their audits and investigations. Thank you for your consideration.
______
CORPORATION FOR PUBLIC BROADCASTING
Prepared Statement of Patricia Harrison, President and CEO
Chairman Harkin and distinguished members of the subcommittee,
thank you for allowing me to submit this testimony on behalf of
America's public media service--public television and public radio--on-
air, online and in the community. The Corporation for Public
Broadcasting (CPB) requests $445 million for fiscal year 2016 and $27.3
million for the Department of Education's Ready To Learn program in
fiscal year 2014.
Since 1967, the Corporation for Public Broadcasting has served as
the steward of continuing Federal appropriations for public television
and radio. Today we are a system comprising more than 1,400 locally
owned and locally operated public radio and television stations serving
local rural and urban communities throughout the country. More than 98
percent of the American people turn to American public media for high
quality content that educates, informs, inspires and entertains. Public
media's commitment to early and lifelong learning, available to all
citizens, helps strengthen our civil society and our democracy. Our
trusted, noncommercial services available for free to all Americans is
especially important to those living in rural communities where the
local public media station is the only source of broadcast news,
information and educational programming.
The financial support for the public broadcasting system that is
derived from the Federal appropriation is the essential investment
keeping public media free and commercial free for all Americans. Former
President Ronald Reagan said, ``government should provide the spark and
the private sector should do the rest.'' And what stations do with the
spark of Federal dollars, which amounts to approximately 15 percent of
a stations budget, results in a uniquely entrepreneurial and American
public media system with a track record of proven benefits delivered
through stations to the American people.
Federal money is the indispensible foundation upon which stations
build and raise, on average, at least six times the amount they receive
from the Federal Government. And it is this initial investment in
public media that keeps it commercial free and available to all
Americans for free. However, smaller stations serving rural, minority
and other underserved communities are hard pressed to raise six times
the Federal appropriation which can represent 40 percent of their
budget. While their communities do the best they can in terms of
financial support, the fact is, without the Federal appropriation these
stations would cease to exist.
No matter what their size, all public media stations work for, and
are accountable to, the people in the communities they serve. That
connection is important because as stations acquire national
programming, they also produce local content and services based on the
needs of their respective communities.
As the steward of these important taxpayer dollars, CPB ensures
that 95 cents of every dollar received goes to support local stations
and the programs and services they offer to their communities; no more
than five cents of every dollar goes to the administration of funding
programs and overhead. Approximately 19 percent of CPB's funding is
directed to the production or acquisition of programming, making CPB
the largest single funder of content for children's programming such as
Sesame Street and Daniel Tiger's Neighborhood; for public affairs
programming such as PBS NewsHour, Morning Edition and Frontline; and
for programming such as Nova, Nature, American Experience, StoryCorps
and the films of Ken Burns.
The Public Broadcasting Act ensures diversity in this programming
by requiring CPB to fund independent and minority producers. CPB
fulfills this obligation, in part, by funding the Independent
Television Service, the five Minority Consortia entities in television
(which represent African American, Latino, Asian American, Native
American and Pacific Islander producers), several public radio
consortia (Latino Public Radio Consortia, African American Public Radio
Stations, and Native Public Media) and numerous minority public radio
stations. In addition, CPB, through its Diversity and Innovation fund,
makes direct investments in the development of diverse primetime and
children's broadcast programs as well as innovative digital content.
In the past year, CPB provided support for Southern California
Public Radio's launch of the ``One Nation Media Project,'' which
produces quality, multimedia journalism that engages a general audience
while emphasizing topics that resonate authentically with multiethnic
communities; the production of America Revisited, a three-part series
by filmmaker Stanley Nelson on the history of African Americans; a
documentary called The Graduates by filmmaker Bernardo Ruiz, which
looks at the education challenges faced by Latino boys and girls; and
PARALYMPICS, which introduces American audiences to high performing
disabled athletes and the biomechanics of disabled sports.
For an investment of approximately $1.35 per American per year,
public broadcasting stations are able to train teachers and help
educate America's children in school and at home; provide in-depth
journalism that informs citizens about important issues in their
neighborhoods, their country, and around the globe; make the arts
accessible to all Americans; and provide emergency alert services for
their communities.
CORPORATION FOR PUBLIC BROADCASTING
CPB's mission is to facilitate the development of, and ensure
universal access to, high-quality noncommercial programming and
telecommunications services, and to strengthen and advance public
broadcasting's service to the American people. CPB does not own or
operate public broadcasting stations, or govern the national public
media organizations. As steward of these important funds, we ensure
these monies are invested in stations that serve our communities and
programs that help strengthen our civil society.
CPB strategically focuses investments through the lens of what we
refer to as the ``Three D's''--Digital, Diversity and Dialogue. This
refers to support for innovation on digital platforms, extending public
media's reach and service over multiple platforms; content that is for,
by and about Americans of all backgrounds; and services that foster
dialogue and a deeper engagement between the American people and the
public service media organizations that serve them.
One example of a CPB investment that embodies each of the Three D's
is our investment in education. Public broadcasting's contribution to
education--from early childhood through adult learning--is well
documented. We are America's largest classroom, with proven content
available to all children, including those who cannot afford preschool.
Our content is repeatedly regarded as ``most trusted'' by parents,
caregivers and teachers. Now, building upon our success in early
childhood education, CPB is leading a national initiative to help
communities address the high school dropout crisis called, ``American
Graduate: Let's Make It Happen.'' More than 75 public media stations
located in 33 States with at-risk communities are working with more
than 800 national and community-based partners to mobilize and bring
together diverse stakeholders and community organizations; filling
voids in information, resources and solutions; building and sharing
best practices for teacher training and student engagement; creating
local programming around the dropout issue unique to their communities,
and leveraging digital media and technology to engage students in an
effort to keep them on the path to graduation.
CORPORATION FOR PUBLIC BROADCASTING'S REQUEST FOR APPROPRIATIONS
Our fiscal year 2016 request balances the fiscal reality facing our
Nation with the bare fact that stations are struggling to provide
service to their communities in the face of shrinking non-Federal
revenues--a $239 million, or 10.8 percent, drop between fiscal year
2008 and fiscal year 2011. Even with these challenges, public
broadcasting contributes to American society in many ways that are
worthy of greater Federal investment. In fiscal year 2016, CPB will
continue to support a range of programming and initiatives through
which stations provide a valuable and trusted service to millions of
Americans.
CPB Base Appropriation (Fiscal Year 2016).--CPB requests a $445
million advance appropriation for fiscal year 2016, to be spent in
accordance with the Public Broadcasting Act's funding formula. The two-
year advance appropriation for public broadcasting, in place since
1976, is the most important part of the ``firewall'' that Congress
constructed between Federal funding and the programs that appear on
public television and radio. President Gerald Ford, who initially
proposed a five-year advance appropriation for CPB, said it best when
he said that advance funding ``is a constructive approach to the
sensitive relationship between Federal funding and freedom of
expression. It would eliminate the scrutiny of programming that could
be associated with the normal budgetary and appropriations processes of
the government.''
Ready To Learn (Fiscal Year 2014).--CPB requests that the U.S.
Department of Education's Ready To Learn (RTL) program be funded at
$27.3 million, the same level as fiscal year 2013. Mr. Chairman,
education is the heart of public media. RTL is a partnership between
the Department, CPB, PBS and local public television stations that
leverages the power of digital television technology, the Internet,
gaming platforms and other media to help millions of young children
learn the reading and math skills they need to succeed in school. The
partnership's work over the past few years has demonstrably increased
reading scores particularly among low-income children and is helping to
erase the performance gap between children from low-income households
and their more affluent peers. An appropriation of $27.3 million in
fiscal year 2014 will enable RTL to develop tools to improve children's
performance in math as well as reading and bring on-the-ground,
station-convened early learning activities to more communities.
All told, the Federal contribution to public media through CPB
amounts to $1.35 per American per year, and the return on investment to
the American taxpayer can be measured in the numbers of children now
ready to learn in school; through in-depth news and public affairs
programming on the local, State, national and international level;
unmatched, commercial-free children's programming; formal and informal
educational instruction for all ages; or inspiring arts and cultural
content.
Americans no longer sit back and experience appointment television
or radio. They are on the move and public media is there with them,
utilizing today's technology to provide content of value to millions of
citizens who trust us to deliver content that matters and is relevant
to their lives today.
Mr. Chairman and members of the subcommittee, thank you again for
allowing CPB to submit this testimony. On behalf of the public
broadcasting community, including the stations in your States and those
they serve, we sincerely appreciate your support.
NONDEPARTMENTAL WITNESSES
Prepared Statement of the Academy of Radiology Research
Thank you for providing the Academy of Radiology Research with the
opportunity to submit testimony on fiscal year 2014 funding for the
National Institutes of Health (NIH). The imaging research community
deeply appreciates the subcommittee's leadership in recommending a
baseline increase to NIH funding in fiscal year 2013. This represented
a much-needed step in the right direction for medical research.
After the sequestration cut of 5.1 percent to the NIH in fiscal
year 2013, the final appropriation for the agency will be approximately
$29.3 billion (assuming a relatively flat fiscal year 2013 level).
Looking back to fiscal year 2004, NIH funding stood at $27.8 billion--
which means our engine for medical breakthroughs in the U.S. has grown
a total of 5.02 percent over the past decade, or at a compounded
annualized rate of 0.54 percent. While we acknowledge that the
subcommittee is not responsible for the sequester, the annualized
growth rate for NIH over the past decade without sequestration (1.01
percent) also does not reflect that of an innovation economy.
NIH Director Francis Collins, M.D., Ph.D., recently stated before
the subcommittee on March 5 that other nations are ``ramping up their
support of biomedical research because they've read our playbook.''
Indeed, unlike the U.S., both emerging and developed economies continue
to prioritize public funding for medical research and development.
China alone is committing an average of $60 billion per year to
biotechnology over the next 5 years--double the budget of the NIH. If
NIH had continued its historical annual rate of growth (6.5 percent)
from the 1960s to 1998 after the ``doubling,'' it would now be
supported at $46.7 billion a year. Even a smaller but sustainable level
of 4 percent annual growth since 2004 would put NIH funding at $38.5
billion today.
It is also important to note that NIH Directors did not wake up to
a -5.1 percent sequester order on March 2, and are just now finding
superfluous areas to trim, fat to cut, or duplication to eradicate.
Directors and their staff have managed flat budgets, with eroding
purchasing power, for the past decade. The sequester reductions are
squarely on highly meritorious proposals.
It is time to move NIH back into meaningful positive direction,
ensuring that it can sustain and grow the number of multi-year
investigator-initiated research grants, the foundation of our Nation's
biomedical research enterprise. We ask that the subcommittee prioritize
NIH even within the statutorily imposed flat budget caps, and begin
reinvigorating medical research.
THE NATIONAL INSTITUTE OF BIOMEDICAL IMAGING AND BIOENGINEERING AS AN
INCUBATOR AND SUPPLIER OF NEW TECHNOLOGIES
Since the 1980s, many clinical and technological advances in CT,
MRI, PET imaging, and image-guided therapies have been developed
through funding from the National Institute for Biomedical Imaging and
Bioengineering (NIBIB). Radiology research is truly an
interdisciplinary science, bringing together physicians, physicists,
mathematicians, chemists, computer scientists, physiologists and others
from numerous scientific fields. This strong and diverse research
pipeline has helped solidify the U.S. as the world leader in the basic
research, development, and commercialization of advanced medical
imaging technologies. It also makes the investment in NIBIB's research
particularly valuable, as there are three distinct outputs from NIBIB
research:
--bench-to-bedside imaging tools that help medical professionals
diagnose, treat, and monitor a wide array of diseases and
conditions, saving millions of lives each year;
--bench-to-bench interdisciplinary research tools that have given
thousands of researchers in other fields game-changing new ways
to tackle the diseases that they study; and
--a pipeline for commercial imaging products, as medical imaging
devices represent one of the Nation's healthiest export
industries, providing tens of thousands of high-skilled jobs
across the country and adding positively to the Nation's gross
domestic product.
Imaging Research as a Bench-to-Bedside Tool
One recent NIBIB-funded discovery--magnetic resonance elastography
(MR elastography)--highlights just how radiology researchers are
constantly pushing the technological envelope to improve human health.
It has long been known that diseased tissue has different mechanical
properties that surrounding normal tissue. Specifically, it tends to
exhibit a slightly more rigid structure as the disease takes over.
Previously, the only way to know that this was occurring was after a
biopsy, usually late in the disease's progression. However, radiology
researchers knew that if they could use advanced imaging to see these
slight biomechanical changes in tissue stiffness, patients and fellow
physicians would have a powerful new tool to find tumors earlier than
ever before.
NIBIB researchers found that by passing MRI waves through diseased
tissue--such as a liver tumor--that they could use new algorithms and
gradients to quantitatively measure and image the tissue's rigidity or
stiffness. This has tremendous clinical implications, as a number of
diseases including liver disease, breast cancer, prostate cancer, and
many others can be detected at the earliest stages using MR
elastography. Patients suspected of liver disease or cancer may think
they are getting ``an MRI.'' However, at places like Mayo Clinic, the
radiologists are likely using a new and better imaging test made
possible with taxpayer-supported imaging R&D.
total amount of grants using advanced imaging tools produced by
radiology research, and as a percent of the total nih budget, 2001-2012
Imaging as a Bench-to-Bench Research Tool
Researchers in nearly every field of study at NIH are taking
advantage of imaging tools being developed by NIBIB and radiology
researchers, using advanced imaging technologies to improve their
understanding of disease and accelerate treatments. Demonstrating the
scope of the imaging research ``toolkit,'' every NIH Institute funded
projects that utilized imaging in fiscal year 2011, and nearly half of
all Institutes invested 10 percent or more of their budget to imaging
projects in fiscal year 2011. Of the 239 NIH Research, Disease and
Condition Categorization (RCDC) codes at NIH, imaging projects were
funded in 211 (88 percent) of all diseases being studied. The largest
funder was the National Cancer Institute (NCI) at $527 million (10
percent), while other ICs dedicating more than 10 percent of their
budget to imaging projects also align with some of the Nation's most
pressing health concerns, such as Alzheimer's (NIA--17 percent),
neurological disorders and stroke (NINDS--19 percent), and heart
disease (NHLBI--12 percent). Across the NIH research enterprise, there
is a large and sustained consumer demand for new imaging projects being
developed by NIBIB researchers.
Imaging Research as a Pipeline for One of America's Strongest
Industries
The Department of Commerce identifies medical imaging equipment as
one of the country's strongest projected exports for the coming decade.
NIBIB research will play a key collaborative role in helping to cement
U.S. leadership in the imaging sector by fortifying the pipeline for
state-of-the-art imaging equipment. The downstream economic impact from
NIBIB research is significant, as GE's MRI division alone supports over
19,000 full-time positions in the U.S., while exporting over 1,000 MRI
magnets per year from its MRI manufacturing facility in Florence, South
Carolina.
Although relatively small at $338 million in fiscal year 2012, the
NIBIB is especially important as the Federal incubator for innovation
in the rapidly moving field of medical imaging. Given its three-legged
return on investment as a supplier of new technologies for patient
care, a developer of game-changing new technologies for scientists in
all fields, and a pipeline for a key domestic sector, we request a
shift in the NIH portfolio for greater investment in imaging R&D.
A global benchmark for R&D spending for an innovation economy is 3
percent of GDP. We recommend that the NIH portfolio begin to be
readjusted in fiscal year 2014 to allow for this same investment in
imaging R&D, increasing the proportion of funding to NIBIB from the
current 1.10 percent of the NIH budget to 3.0 percent over the next 5
years. This path to increased imaging R&D would call for a $70 million
increase for NIBIB in fiscal year 2014.
______
Prepared Statement of AcademyHealth
AcademyHealth is pleased to offer this testimony regarding the role
of health services research in improving our Nation's health and the
performance of the health care and public health systems.
AcademyHealth's mission is to support research that leads to
accessible, high value, high-quality health care; reduces disparities;
and improves health. We represent the interests of more than 4,400
scientists and policy experts and 160 organizations that produce and
use research to improve health and health care. We advocate for the
funding to support health services research; a robust environment to
produce this research; and its more widespread dissemination and use.
As medical research discovers for cures for disease, health
services research discovers cures for the health system. This research
diagnoses problems in health care and public health delivery and
identifies solutions to improve outcomes for more people, at greater
value. This research is used by patients, health care providers, public
health professionals, hospitals, employers, and public and private
payers to enhance consumer choice, improve patient safety, and promote
high quality care.
Finding new ways to get the most out of every health care dollar is
critical to our Nation's long-term fiscal health. Like any corporation
making sure it is developing and providing high quality products, the
Federal Government--as the Nation's largest health care purchaser--has
a responsibility to get the most value out of every taxpayer dollar it
spends on Medicare, Medicaid, Children's Health Insurance Program, and
veterans' and service members' health. Health services research into
the merits of different policy options for delivery system
transformation, patient-centered quality improvement, community health,
and disease prevention offers policymakers in both the public and
private sectors the information they need to improve quality and
outcomes, identify waste, eliminate fraud, increase efficiency and
value, and promote personal choice.
Put plainly, health services research helps Americans get their
money's worth when it comes health care. We need more of it, not less.
Despite the positive impact health services research has had on the
U.S. health care system, and the potential for future improvements in
quality and value, the United States spends less than one cent of every
health care dollar on this research; research that can help Americans
spend their health care dollars more wisely and make more informed
health care choices.
We respectfully ask that the subcommittee instead consider the
value of health services research and strengthen its capacity to
address the pressing challenges America faces in providing access to
high-quality, efficient care. The following list summarizes
AcademyHealth's fiscal year 2014 funding recommendations for agencies
that support health services research and health data under the
subcommittee's jurisdiction.
AGENCY FOR HEALTHCARE RESEARCH AND QUALITY
The Agency for Healthcare Research and Quality (AHRQ) is the
Federal health services research agency with the sole purpose of
improving health care. AHRQ funds health services research and health
care improvement programs in universities, medical centers, and
research institutions that are transforming people's health in
communities in every State around the Nation. The science funded by
AHRQ provides consumers and their health care professionals with
valuable evidence to make health care decisions. For example, medical
societies use AHRQ-funded research to inform their recommendations for
treatment of type 2 diabetes and rheumatoid arthritis. These evidence-
informed recommendations give physicians a foundation for describing
what the best care looks like, so millions of patients living with
these and other conditions may determine what the right care might be
for them.
AHRQ's research also provides the basis for protocols that prevent
medical errors and reduce hospital-acquired infections (HAI), and
improve patient experiences and outcomes. For example, AHRQ's evidence-
based Comprehensive Unit-based Safety Program to Prevent Healthcare-
Associated Infections (CUSP)--first applied on a large scale in 2003
across more than 100 ICUs across Michigan--saved more than 1,500 lives
and nearly $200 million in the program's first 18 months. The protocols
have since been expanded to hospitals in all 50 States, the District of
Columbia, and Puerto Rico to continue the national implementation of
this approach for reducing HAIs.
AcademyHealth joins the Friends of AHRQ--an alliance of health
professional, research, consumer, and employer organizations that
support the agency--in recommending an overall funding level of $434
million for AHRQ in fiscal year 2014, consistent with the President's
request.
CENTERS FOR DISEASE CONTROL AND PREVENTION
The National Center for Health Statistics (NCHS) is the Nation's
principal health statistics agency. Housed within the Centers for
Disease Control and Prevention (CDC), it provides critical data on all
aspects of our health care system through data cooperatives and surveys
that serve as a gold standard for data collection around the world.
AcademyHealth appreciates the subcommittee's support of NCHS in recent
years. Such efforts have allowed NCHS to reinstate data collection and
quality control efforts, continue the collection of vital statistics,
and enhanced the agency's ability to modernize surveys to reflect
changes in demography, geography, and health delivery.
We join the Friends of NCHS--an alliance of health professional,
research, consumer, industry, and employer organizations that support
the agency--in recommending an overall funding level of $181.5 million
for NCHS in fiscal year 2014, consistent with the President's request.
This funding will put the agency on track to become a fully
functioning, 21st Century, national statistical agency.
NATIONAL INSTITUTES OF HEALTH
NIH spends approximately $1 billion on health services research
annually--roughly 3 percent of its entire budget--making it the largest
Federal sponsor of health services research. We join the research
community in seeking at least $32 billion for NIH in fiscal year 2014.
NIH has an important role in the Federal health services research
continuum, and is well-positioned to ensure that discoveries from
clinical trials are effectively translated into health care delivery.
AcademyHealth supports efforts to help NIH foster greater coordination
of its health services research investment among its institutes and
across other Federal agencies to avoid duplication.
AcademyHealth also recommends that the Clinical and Translational
Science Awards (CTSA) through the National Center for Advancing
Translational Sciences (NCATS) sustain investment in the full spectrum
of translational research (T1-T4). The CTSA program enables innovative
research teams to speed discovery and advance science aimed at
improving our Nation's health. The program encourages collaboration in
solving complex health and research challenges and finding ways to turn
their discoveries into practical solutions for patients.
CENTERS FOR MEDICARE AND MEDICAID SERVICES
Steady funding decreases for the Office of Research, Development
and Information have hindered CMS's ability to meet its statutory
requirements and conduct new research to strengthen public insurance
programs, which together cover nearly 100 million Americans and
comprise 45 percent of America's total health expenditures. As these
Federal entitlement programs continue to pose significant budget
challenges for both Federal and State governments, it is critical that
we adequately fund research to evaluate the programs' efficiency and
effectiveness and seek ways to manage their projected spending growth.
AcademyHealth supports CMS's discretionary research and development
budget to improve the effectiveness and efficiency of these programs.
In conclusion, the accomplishments of health services research
would not be possible without the leadership and support of this
subcommittee. We hope the subcommittee gives strong consideration to
our fiscal year 2014 funding recommendations for the Federal agencies
funding health services research and health data. If you have questions
or comments about this testimony or wish to know more about health
services research, please contact Lisa Simpson, President and CEO of
AcademyHealth, or [email protected].
______
Prepared Statement of the Ad Hoc Group for Medical Research
The Ad Hoc Group for Medical Research is a coalition of more than
300 patient and voluntary health groups, medical and scientific
societies, academic and research organizations, and industry. We
appreciate the opportunity to submit this statement in support of
enhancing the Federal investment in biomedical, behavioral, and
population-based research conducted and supported by the National
Institutes of Health (NIH).
We are deeply grateful to the subcommittee for its long-standing
and bipartisan leadership in support of NIH. These are difficult times
for our Nation and for people all around the globe, but we believe that
science and innovation are essential if we are to continue to improve
our Nation's health, sustain our leadership in medical research, and
remain competitive in today's global information and innovation-based
economy. The Ad Hoc Group recommends that NIH receive at least $32
billion in fiscal year 2014. We believe this amount is the minimum
level of funding needed to accommodate the rising costs of medical
research and to help mitigate the effects of sequestration. The Ad Hoc
Group also encourages the subcommittee to work to stop the pernicious
cuts to research funding that squander invaluable scientific
opportunities, discourage up and coming scientists, threaten medical
progress and continued improvements in our Nation's health, and
jeopardize our economic vitality.
NIH: A Public-Private Partnership to Save Lives and Provide Hope
The partnership between NIH and America's scientists, medical
schools, teaching hospitals, universities, and research institutions is
a unique and highly-productive relationship, leveraging the full
strength of our Nation's research enterprise to foster discovery,
improve our understanding of the underlying cause of disease, and
develop the next generation of medical advancements. Approximately 84
percent of the NIH's budget goes to more than 300,000 research
positions at over 2,500 universities and research institutions located
in every State.
The Federal Government has a unique role in supporting medical
research. No other public, corporate or charitable entity is willing or
able to provide the broad and sustained funding for the cutting edge
basic research necessary to yield new innovations and technologies in
the future.
Research funded by NIH has contributed to nearly every medical
treatment, diagnostic tool, and medical device developed in modern
history, and we all are enjoying longer, healthier lives thanks to the
Federal Government's wise investment in this lifesaving agency. From
the major advances--including a nearly 70 percent reduction in the
death rate for coronary heart disease and stroke--to moving stories of
personalized medicine--such as children with rare diseases like dopa-
responsive dystopia, whose prognosis has been transformed from severely
disabled to happy and healthy through genomic medicine--NIH's role in
improving human health has been extraordinary. NIH research impacts the
full spectrum of the human experience, resulting in a 40 percent
decline in infant mortality over the past 20 years, as well as a 30
percent decrease in chronic disability among seniors. For patients and
their families, NIH is the ``National Institutes of Hope.''
NIH is the world's premiere supporter of merit-reviewed,
investigator-initiated basic research. This fundamental understanding
of how disease works and insight into the cellular, molecular, and
genetic processes underlying life itself, including the impact of
social environment on these processes, underpin our ability to conquer
devastating illnesses. The application of the results of basic research
to the detection, diagnosis, treatment, and prevention of disease is
the ultimate goal of medical research. Ensuring a steady pipeline of
basic research discoveries while also supporting the translational
efforts necessary to bring the promise of this knowledge to fruition
requires a sustained investment in NIH.
The research supported by NIH drives not only medical progress but
also local and national economic activity, creating skilled, high-
paying jobs and fostering new products and industries. According to a
report released by United for Medical Research, a coalition of
scientific advocates, institutions and industries, in fiscal year 2011,
NIH-funded research supported an estimated 432,000 jobs all across the
United States, enabled 13 States to experience job growth of more than
10,000 jobs, and generated more than $62 billion in new economic
activity. Another report, produced by Tripp Umbach, calculated a $2.60
return on investment for every public dollar spent on research at
American medical schools and teaching hospitals.
Sequestration Threatens Scientific Momentum
As patients, health care providers, and scientists we are deeply
disturbed about the impact the more than 5 percent cut in NIH funding
under sequestration in the current fiscal year will have on our ability
to sustain the scientific momentum that has contributed so greatly to
our Nation's health and our economic vitality. But sequestration
represents only the latest threat to the viability of this Nation's
medical research enterprise, following a decade when NIH has lost
nearly one-fifth of its buying power after inflation.
The leadership and staff at NIH and its Institutes and Centers has
engaged patient groups, scientific societies, and research institutions
to identify emerging research opportunities and urgent health needs,
and has worked resolutely to prioritize precious Federal dollars to
those areas demonstrating the greatest promise. But a continued erosion
of our national commitment to medical research threatens our ability to
support a medical research enterprise that is capable of taking full
advantage of existing and emerging scientific opportunities.
Perhaps one of the greatest concerns is the obstacle these
continued cuts will present to the next generation of scientists, who
will see training funds slashed and the possibility of sustaining a
career in research diminished. NIH also plays a significant role in
supporting the next generation of innovators, the young and talented
scientists and physicians who will be responsible for the breakthroughs
of tomorrow. Appearing before the House Labor-HHS-Education
Appropriations Subcommittee on March 5, NIH Director Francis Collins,
M.D., Ph.D., said, ``That's our seed corn. It has been the strength of
America . . . the biomedical research community, their creativity,
their innovative instincts, and we're putting that at serious risk as
we see this kind of downturn in the support for research.''
The challenges of maintaining a cadre of physician-scientists to
facilitate translation of basic research to human medicine, ensuring a
biomedical workforce that reflects the racial and gender diversity of
our citizenry, and maximizing our Nation's human capital to solve our
most pressing health problems will only be addressed through continued
support of NIH.
NIH is Critical to U.S. Competitiveness
Our country still has the most robust medical research capacity in
the world, but that capacity simply cannot weather repeated blows such
as persistent below-inflation funding levels and cuts of sequestration,
which jeopardize our competitive edge in an increasingly innovation-
based global marketplace. Dr. Collins testified earlier this year that
other nations are ``ramping up their support of biomedical research
because they've read our playbook.'' A 2012 report from the Information
Technology and Innovation Foundation stated, ``China, for example, has
identified biotechnology as one of seven key strategic and emerging
(SEI) pillar industries and has pledged to invest $308.5 billion in
biotechnology over the next 5 years. This means that, if current trends
in biomedical research investment continue, the U.S. Government's
investment in life sciences research over the ensuing half-decade is
likely to be barely half that of China's in current dollars, and
roughly one-quarter of China's level as a share of GDP . . . . Other
countries are also investing more in biomedical research relative to
the sizes of their economies. When it comes to Government funding for
pharmaceutical industry-performed research, Korea's government provides
seven times more funding as a share of GDP than does the United States,
while Singapore and Taiwan provide five and three times as much,
respectively.''
Talented medical researchers from all over the world, who once
flocked to the U.S. for training and stayed to contribute to our
innovation-driven economy, are now returning to better opportunities in
their home countries. We cannot afford to lose that intellectual
capacity, much less the jobs and industries fueled by medical research.
The U.S. has been the global leader in medical research because of
Congress's bipartisan recognition of NIH's critical role. To maintain
our dominance, we must reaffirm this commitment to provide NIH the
funds needed to maintain our competitive edge.
NIH: An Answer to Challenging Times
The Ad Hoc Group's members recognize the tremendous challenges
facing our Nation's economy and acknowledge the difficult decisions
that must be made to restore our country's fiscal health. Nevertheless,
we believe strongly that NIH is an essential part of the solution to
the Nation's economic restoration. Strengthening our commitment to
medical research, through robust funding of the NIH, is a critical
element in ensuring the health and well-being of the American people
and our economy.
Therefore, the Ad Hoc Group for Medical Research respectfully
requests that the subcommittee recognize NIH as an urgent national
priority and provide at least $32 billion in the fiscal year 2014
appropriations bill.
______
Prepared Statement of the AIDS Healthcare Foundation
Dear Mr. Chairman Harkin and Ranking Member Moran: My name is Tom
Myers, and I am the General Counsel for the AIDS Healthcare Foundation
(AHF). AHF hereby submits the following testimony and funding request
in the amount of $2,422,178,000 for the Ryan White CARE Act for fiscal
year 2014:
Consistent with goal number 4 of the National HIV/AIDS Strategy for
the United States--``Achieving a More Coordinated Response to the HIV
Epidemic in the United States''--appropriations for the Ryan White CARE
Act (the ``CARE Act'') in fiscal year 2014 presents a unique
opportunity to harmonize the CARE Act with the Strategy's three main
goals:
--Reducing New HIV Infections;
--Increasing Access to Care and Improving Health Outcomes for People
Living With HIV; and
--Reducing HIV-Related Health Disparities.
Funding of the CARE Act at the requested level will allow the CARE
Act to be harmonized with the changes in health care delivery to be
brought about by the Affordable Care Act (``ACA'') to provide a more
comprehensive and more effective response to the HIV epidemic in the
U.S.
The current state and trends of the HIV/AIDS epidemic in the United
States should guide how to harmonize the CARE Act with Health Care
Reform and the National HIV/AIDS Strategy.
While the future is always uncertain, and it is unclear exactly
what the consequences of the ACA will be, there are a number of facts
that can help determine necessary funding for the CARE Act:
--There will be a need for a robust CARE Act, in its current form,
for the foreseeable future.--The implementation of Medicaid
expansion and insurance exchanges will be neither a quick nor
complete process. Full-scale change is not set to begin until
2014, and even now, many States, including those with some of
the largest HIV/AIDS populations such as Texas and Georgia--are
delaying or foregoing participating in Medicaid expansion or
setting up exchanges. As a result, the safety net that is the
CARE Act will need to remain largely intact until this process
is complete, and will need to be available for those States the
do not fully implement the ACA.
--Most Americans with HIV are not linked to or retained in HIV
care.--Many American still do not know their HIV status, are
not linked to HIV care, and are not retained in HIV care. In
fact, a minority of all Americans with HIV are on
antiretroviral treatment. Supporting access to and maintenance
of care will be critical to ending the epidemic.
--Neither Medicaid nor insurance exchanges may provide all the
services currently available under the CARE Act.--The CARE Act
understands that effectively treating a complex, chronic
disease like HIV requires a number of approaches, disciplines,
and services. Insurance plans and Medicaid, in both of which
people living with HIV area small minority of participants, may
not be organized with the needs of people living with HIV in
mind, and may not offer the full range of services provided by
the CARE Act.
--20 percent of Americans with HIV are unaware of their status.--This
group is thought unwittingly to be the source of 70 percent of
all new infections. The HIV epidemic in the Untied States will
not end until this group is made aware of their status, and are
brought into care.
--Treatment is Prevention.--One of the consensuses emerging from the
recent International AIDS Conference is that HIV treatment,
which can reduce the chances of infection by up to 96 percent,
is the most effective and the most cost effective way to
prevent new infections. Getting people living with HIV into
care, and keeping them adherent to treatment, will be the key
to ending this epidemic.
--The HIV Epidemic in the U.S. continues to trend South, and in
Communities of Color.--Recent publications have documented and
highlighted the enormous disparities in HIV rates and new
infections in the South, and among communities of color.
Addressing these disparities, in many States that have
expressed a reluctance to implement the ACA, will be paramount
in fighting the epidemic.
Given the above facts, in order to ensure that adequate care,
treatment and prevention services are available to fully combat the
HIV/AIDS epidemic in the United States, funding the Care Act at the
requested level is required. Thank you for your attention and support
in this matter. We look forward to working with you to ensure that the
CARE Act continues to be part of an effective, comprehensive program to
end HIV/AIDS in America.
______
Prepared Statement of the AIDS Institute
Dear Chairman Harkin and members of the subcommittee: My name is
Carl Schmid, Deputy Executive Director of the AIDS Institute. The AIDS
Institute, a national public policy, research, advocacy, and education
organization, is pleased to offer comments in support of critical HIV/
AIDS programs as part of the fiscal year 2014 Labor, Health and Human
Services, Education, and Related Agencies appropriation measure. We
thank you for supporting these programs over the years, and hope you
will do your best to adequately fund them in the future in order to
provide for and protect the health of many Americans.
HIV/AIDS remains one of the world's worst health pandemics.
According to the CDC, in the U.S. over 636,000 people have died of AIDS
and there are 50,000 new infections each year. A record 1.2 million
people in the U.S. are living with HIV. Persons of minority races and
ethnicities are disproportionately affected. African Americans, who
make up just 12 percent of the population, account for 44 percent of
the new infections. HIV/AIDS disproportionately affects low income
people; nearly 90 percent of Ryan White Program clients have a
household income of less than 200 percent of the Federal Poverty Level.
The U.S. Government has played a leading role in fighting HIV/AIDS,
both here and abroad. The vast majority of the discretionary programs
supporting domestic HIV/AIDS efforts are funded through this
subcommittee. We are keenly aware of current budget constraints and
competing interests for limited dollars, but programs that prevent and
treat HIV are inherently in the Federal interest as they protect the
public health against a highly infectious virus. If left unaddressed it
will certainly lead to increased infections, more deaths, and higher
health costs.
With the advent of antiretroviral medicines, HIV has turned from a
near certain death sentence to a treatable chronic disease if people
have access to consistent and affordable health care and medications.
Through prevention, care and treatment, and research we now have the
ability to actually end AIDS. In 2011, a ground-breaking clinical trial
(HPTN 052)--named the scientific breakthrough of the year by Science
magazine--found that HIV treatment not only saves the lives of people
with HIV, but also reduces HIV transmission by more than 96 percent--
proving that HIV treatment is also HIV prevention. In order to realize
these benefits, people with HIV must be diagnosed through testing,
linked to and retained in care and treatment.
We also have a National HIV/AIDS Strategy that sets clear goals and
priorities, and brings all the Federal agencies addressing HIV together
to ensure Federal resources are well coordinated.
With all these positive developments it would be a shame to go
backwards, but that is what could happen given the sequestration and
budget cuts that are impacting the Ryan White Program at HRSA, HIV and
Hepatitis prevention programs at the CDC, and research at the NIH.
The Ryan White HIV/AIDS Program
The Ryan White HIV/AIDS Program provides some level of medical
care, drug treatment, and support services to approximately 546,000
low-income, uninsured, and underinsured individuals with HIV/AIDS. With
people living longer and continued new diagnoses, the demands on the
program continue to grow and many needs remain unmet. According to the
CDC, only 37 percent of people living with HIV in the U.S. are retained
in HIV care, only 33 percent have been prescribed antiretroviral
treatment, and only 25 percent are virally suppressed. We have a long
way to go before we can realize the dream of an AIDS-free generation.
With continued funding we can reverse these trends.
The AIDS Drug Assistance Program (ADAP), one component of the Ryan
White Program, provides States with funds to pay for medications for
over 200,000 people. Over the last couple of years, as more infections
were identified due to increased HIV testing and people lost their jobs
and health insurance, demand on the program far outpaced its budget.
This led to ADAP wait lists of 9,300 people. We are thankful that
President Obama and Congress allocated additional funds, which when
combined with assistance from pharmaceutical companies reduced the wait
lists to less than 50 people today.
This could all change because $35 million transferred by President
Obama on World AIDS Day 2011 for ADAP was not continued in the fiscal
year 2013 Continuing Resolution. While we are hopeful the President
will transfer some of this funding again, it is critical that the $35
million be maintained in fiscal year 2014. If it is not, an estimated
8,000 patients currently taking medications through ADAP will risk
losing access to their lifesaving medications. This would be very
dangerous as once antiretroviral treatment begins, the drugs must be
taken every day without interruption or resistance to medications will
occur.
On top of this loss of funding, sequestration has reduced current
ADAP funding by another $45 million. The loss of this funding could
force States to stop paying for medications to another 14,000 people
currently taking medications. We urge you to do all you can to prevent
this and ensure ADAP and the rest of the Ryan White Program receive
adequate funding to keep up with the growing demand. According to
NASTAD, enrollment in ADAP increased last year by 13,500 people, or 8
percent. While it will be not sufficient, we are pleased the President
has requested an increase of $10 million to ADAP in fiscal year 2014
for a total of $943.3 million.
With this increased demand for medications comes a corresponding
increase in medical care and support services provided by all other
parts of the program. Sequestration will be reducing these services by
over $70 million in 2013. We urge the Committee to restore these
harmful cuts and ensure the entire Ryan White Program is adequately
funded in fiscal year 2014.
We are looking forward to implementation of the expanded
opportunities for health care coverage under the Affordable Care Act
(ACA). While it will result in some cost shifting for medications and
primary care, it will never be a substitute for the Ryan White Program.
Over 70 percent of Ryan White Program clients today have some sort of
insurance coverage, mostly through traditional Medicaid and Medicare.
Their coverage will not change with health reform; the Ryan White
Program will be needed as it is today for coverage completion services.
The Medicaid expansion is a State option and about half of the States
are not moving forward with it at this time. As ACA is implemented,
benefits will differ from State to State and there will be many gaps
that will have to be filled by the Ryan White Program. Plans will not
offer all comprehensive essential support services, such as case
management, transportation, and nutritional services, that are needed
to ensure retention in medical care and adherence to drug treatment.
For example, Part D of the Ryan White Program provides family-centered
care to women, infants, children, and youth living with HIV/AIDS. This
approach of coordinated, comprehensive, and culturally competent care
leads to better health outcomes. Therefore, the Ryan White Program,
while it may need to change in the future, must continue and must be
adequately funded.
CDC HIV Prevention
As a Nation, we must do more to prevent new HIV infections, but we
only allocate 3 percent of our HIV/AIDS spending towards prevention.
All the care and treatments costs would be saved if we did not have the
infections in the first place. Preventing just one infection would save
$355,000 in future lifetime medical costs. Preventing all the new
50,000 cases in just 1 year would translate into an astounding $18
billion saved in lifetime medical costs.
With more people living with HIV than ever before, there are
greater chances of HIV transmission. The CDC and its grantees have been
doing their best with limited resources to keep the number of
infections stable, but that is not good enough. It is focusing
resources on those populations and communities most impacted by HIV and
investing in those programs that will prevent the most number of
infections. This means more of its resources will be going to the South
and focusing on gay men. One group in particular that needs additional
study and resources is young black gay men, who experienced a 38
percent increase in new infections from 2008-2010.
With over 200,000 people living with HIV who are unaware of their
infection, the CDC is also focused on increased testing programs.
Testing people early and linking them to care and treatment is critical
not only for their own health outcomes but also in preventing new
infections. It is estimated that sequestration would reduce the annual
number of HIV tests by 424,000.
The CDC estimates that in 2010, 26 percent of all new HIV
infections occurred among youth ages 13 to 24. Nearly 75 percent of
those infections were among young gay men. Clearly, we must do a better
job of educating the youth of our Nation, including gay youth, about
HIV. To compound matters, the HIV Division of Adolescent and School
Health (DASH) lost 25 percent of its budget in fiscal year 2012. We ask
that the subcommittee restore this $10 million cut.
For the first year of sequestration, CDC's HIV prevention programs
will be cut by over $40 million, which will put at risk all the recent
progress we are making in reducing the number of new infections.
The President has proposed to replace the sequester and increase
CDC's HIV prevention programs by $10 million in fiscal year 2014.
Additionally, he has proposed redirecting some current HIV testing
funding to assist State health departments and others to develop
billing systems for HIV testing. The AIDS Institute supports this
initiative so that States and others can take advantage of the coverage
of preventive services under the Affordable Care Act.
HIV/AIDS Research at the National Institutes of Health (NIH)
While we have made great strides in the area of HIV/AIDS, there is
still a long way to go. Continued research at the NIH is necessary to
learn more about the disease and to develop new treatments and
prevention tools. Work continues on vaccine research and we look
forward to an eventual cure. Sequestration will mean loss of $163
million in HIV/AIDS research funding, and 297 HIV/AIDS research grants
would go unfunded.
Viral Hepatitis
There are over 5.3 million people in the U.S. infected with viral
hepatitis, and seventy-five percent are not aware of their infection,
yet hepatitis prevention at the CDC is funded at only $30 million. This
is insufficient to provide basic public health services such as
education, counseling and testing. Increased funding is needed to
implement the HHS Viral Hepatitis Action Plan and the strategy in the
Institute of Medicine (IOM) report, Hepatitis and Liver Cancer: A
National Strategy for Prevention and Control of Hepatitis B and C.
The AIDS Institute urges the Federal Government to make a greater
commitment to Hepatitis prevention. For fiscal year 2014, we request an
increase of at least $6 million for a total of $36.6 million.
Policy Riders
The AIDS Institute is opposed to using the appropriations process
as a vehicle to repeal or prevent the implementation of current law or
ban funding for certain activities or organizations. This includes
implementation of the Affordable Care Act. We also urge you not to
interfere with the implementation of programs, such as syringe exchange
programs, which are scientifically proven to be effective in the
prevention of HIV and Hepatitis.
Again, we thank you for your continued support of these critical
programs important to so many individuals and communities nationwide.
We have made great progress, but we are still far from achieving our
goal of an AIDS-free generation. We now have the tools, but we need
continued leadership and the necessary resources to realize our goal.
Thank you.
______
Prepared Statement of AIDS United
On behalf of AIDS United and our diverse partner organizations I am
pleased to submit this testimony to the Members of this subcommittee on
the urgency of needed funding for the fiscal year 2014 domestic HIV/
AIDS portfolio. AIDS United is a national organization that seeks to
end the AIDS epidemic in the United States by combining private-sector
fundraising, philanthropy, coalition building, public policy expertise,
and advocacy--as well as a network of passionate local and State
partners--to respond effectively and efficiently to the HIV/AIDS
epidemic in the communities most impacted by the epidemic. Through its
unique Public/Private Partnerships, Public Policy Committee and
targeted special grant-making initiatives, AIDS United represents over
300 grassroots organizations. These organizations provide HIV
prevention, care, treatment, and support services to underserved
individuals and populations most impacted by the HIV/AIDS epidemic
including communities of color, women and gay and bisexual men and men
who have sex with men (MSM) as well as education and training to
providers of treatment services.
AIDS United understands the fiscal environment that the country is
wrestling with right now is austere. However, we know that investment
in prevention and retention in HIV care are critical in lowering the
number of new infections in the domestic HIV epidemic. As competing
budget priorities are weighed please keep in mind that HIV is 100
percent preventable, if we as a Nation muster up the political will and
funding to address domestic HIV on level that meets the needs of the
epidemic.
I write to request increased funding for the domestic HIV/AIDS
portfolio in fiscal year 2014 to help reach the National HIV/AIDS
Strategy (NHAS) vision: ``The United States will become a place where
new HIV infections are rare and when they do occur, every person,
regardless of age, gender, race/ethnicity, sexual orientation, gender
identity, or socio-economic circumstance, will have unfettered access
to high quality, life extending care, free from stigma and
discrimination.'' To reach this vision, NHAS states three primary goals
on which we must focus our efforts.
The first NHAS goal calls for: ``Reducing the number of people who
become infected with HIV.'' To continue progress in achieving this
goal, the Centers for Disease Control and Prevention's (CDC) National
Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention (Center)
needs to be funded at the HIV/AIDS community's request of $1.460
billion to ensure that prevention messages can be targeted to reach
hard to reach populations who do not believe they are vulnerable to HIV
infection as well as the approximately 20 percent of HIV positive
individuals who are unaware of their HIV status. President Obama's
fiscal year 2014 request for the Center is an increase of $71.3 million
(including the Working Capital Fund); AIDS United feels this is the
minimum amount that must be incorporated this year in order to reach
the high impact prevention targets the CDC has developed. According to
the CDC, the estimated return on investment for CDC dollars spent has
been 350,000 HIV infections averted and $125 billion in direct medical
costs saved. Preventing an HIV infection is less costly than treating
HIV disease.
AIDS United draws the subcommittee's attention to an important HIV
prevention policy issue that does not require direct funding. We urge
the sub-committee to include syringe access language that was enacted
into law in fiscal year 2010 and fiscal year 2011. Unfortunately,
fiscal year 2012 restored an obsolete rider that bans the use of
Federal funds for syringe exchange despite clear evidence that syringe
exchange programs reduce HIV and hepatitis C infections and reduce
substance abuse as well. The fiscal year 2011 language states that
Federal funding may be used for syringe exchange programs unless local
public health or local law enforcement authorities deem a site to be
``inappropriate.'' This language best ensures authentic local control
and lets local communities make their own decisions about how best to
prevent new HIV and hepatitis infections. Sixteen percent of HIV/AIDS
cases and more than 55 percent of hepatitis C cases are directly or
indirectly related to injection drug use. Numerous studies have shown
that syringe exchange programs are a cost-effective means to lower
rates of HIV/AIDS and viral hepatitis, reduce the use of illegal drugs
and help connect people to medical treatment, including substance abuse
treatment.
``Increasing access to care and optimizing health outcomes for
people living with HIV'' is the second NHAS primary goal. The CDC
estimates that 1.2 million people are living with HIV in the United
States. All of these individuals need to have access to care, but since
HIV disease is often a disease of poverty many HIV positive individuals
are uninsured or underinsured. The Ryan White CARE Act will continue to
play a critical role for some of our Nation's most vulnerable citizen's
even after full implementation of the Affordable Care Act (ACA) by
ensuring coverage completion, addressing gaps in care, ensuring
affordability of care, and the provision of HIV services to those left
out of reform. In short it will be needed to continue in its role as
the payer of last resort for more than 600,000 individuals, both while
People Living with HIV/AIDS move into new coverage eligibility over the
next years of ACA implementation and afterwards. In fact approximately
75 percent of those served by Ryan White Programs have access to some
type of health insurance, but continue to count on essential care and
financial support services that only the Ryan White Program provides
The implementation of the ACA will begin in January of 2014, 3
months after the beginning of fiscal year 2014 and current and ongoing
investments in the Ryan White Program are essential to ensure that the
U.S. builds on the experience of Ryan White Program providers in
helping find people living with HIV, linking them to care and ensuring
effective treatment, saving lives and eventually helping to end the
HIV/AIDS epidemic. By law most Ryan White Program grantees must use 75
percent or more of their funds to provide ``core medical services''
including medication. The remaining funding is used by grantees to
provide services that can help to ensure people living with HIV are
able to access, be retained and adhere to regular treatment and care.
There will continue to be a strong need to provide these services
critical to good outcomes across the HIV ``treatment cascade'' not
covered or inadequately covered by Medicaid expansion or plans in State
and Federal health insurance marketplaces. In fact data shows that 70
percent of clients who receive Ryan White Program funded care reach
viral suppression as opposed to just 28 percent of the overall
population.
It remains crucial that the Ryan White Program get a substantial
increase from this subcommittee. The community believes an increase of
$442.6 million is needed to address all parts of the program, but the
Ryan White program must receive at least the President's fiscal year
2014 requested increase of $186.5 million.
Another important component of the Ryan White Program that is
important for increasing access to care is the AIDS Drug Assistance
Program (ADAP). ADAP provides medications for treating people with HIV
who cannot access Medicaid or private health insurance. ADAP is able to
assist with co-pays for individuals as well. While the waiting list is
not large at this time, ADAP is in a continual State of flux. The World
AIDS Day funding that President Obama included in fiscal year 2012 ADAP
and Part C funding did not transition to the base for the Continuing
Resolution for fiscal year 2013. The community is working with the
Administration on this fix, but this funding must be included in the
base for fiscal year 2014 to ensure those on medication can continue
their medications. While we acknowledge the President's request for an
increase of $92 million for ADAP, AIDS United urges the subcommittee to
provide an fiscal year 2014 increase of at least $214.7 million for
this vital, life-saving program.
Addressing workforce issues is important to achieving the goal of
increasing access to care and improving health outcomes. The AIDS
Education and Training Centers (AETCs), a component of Part F of the
Ryan White Program, supports workforce development and training for
doctors, advanced practice nurses, physicians' assistants, nurses, oral
health professionals, and pharmacists about HIV treatment, HIV testing,
viral hepatitis, and other HIV co-morbidities. AIDS United urges the
subcommittee to provide a total of $42.2 million for Ryan White Part F/
AETCs, an increase of $5.3 million over the fiscal year 2013 funding
level.
The third NHAS goal calls for reducing HIV-related health
disparities. Racial and ethnic communities continue to be impacted
disproportionately and at alarming rates. The impact on black women and
gay and bisexual men of color is particularly disturbing. The Minority
HIV/AIDS Initiative (MAI) benefits African American, Latino, Asian and
Pacific Islander, and Native American and Alaska Native communities
across the country. It is essential that the MAI be fully funded in
fiscal year 2014 at $610 million.
The Social Innovation Fund (SIF) administered by the Corporation
for National and Community Service, leverages Federal and private
resources to support innovative community-based programs that work in
improving economic opportunity and healthy futures. SIF funded sites
across the country have used $95 million in Federal investments to
leverage $250 million of additional private support. AIDS United
partners are using SIF to expand access to care, improve individual
health outcomes, and strengthen local service systems to connect
marginalized individuals living with HIV to high quality supportive
services and health care. AIDS United urges the subcommittee to provide
a total of $49 million for SIF, consistent with the Administration
request.
AmeriCorps, also administered by the Corporation for National and
Community Services, provides opportunities for over 70,000 individuals
to make an intensive commitment to community service to meet critical
needs in education, public safety, and health. Participants in AIDS
United's AmeriCorps Program deliver vital HIV-related services and
resources while training the next generation of HIV/AIDS leaders. AIDS
United urges the subcommittee to meet the Administration request of
$346 million for fiscal year 2014 funding level for the AmeriCorps
State and national programs.
After nearly 32 years, the HIV epidemic is a continuing crisis in
the United States. Progress that has been made, however, has enabled
more and more people to speak of an end of AIDS in America. We can
achieve that by expanding resources for domestic HIV prevention, care
and treatment, and research efforts to meet the goals of the National
HIV/AIDS Strategy. On behalf of its partner organizations and the many
thousands of HIV positive Americans and those affected by HIV who they
serve, AIDS United, urges the subcommittee to consider and support the
fiscal year 2014 funding levels that we have outlined.
______
Prepared Statement of Alliance for Aging Research
Chairman Harkin, Ranking Member Moran, and members of the
subcommittee: My name is Cynthia A. Bens, Vice President of Public
Policy for Alliance for Aging Research. For more than 25 years, the
not-for-profit Alliance for Aging Research, www.agingresearch.org, has
advocated for medical research to improve the quality of life and
health for all Americans as we grow older. Our efforts have included
supporting increased Federal funding of aging research by the National
Institutes of Health (NIH), through the National Institute on Aging
(NIA) and other NIH institutes and centers. The Alliance appreciates
the opportunity to submit testimony highlighting the important role
that the NIH plays in facilitating aging-related medical research
activities and the ever more urgent need for sustained Federal
investment and focus to advance scientific discoveries to keep
individuals healthier longer.
The Alliance for Aging Research supports funding the NIH at $32
billion in fiscal year 2014 with a minimum of $1.4 billion in funding
for the NIA specifically. This level of support would allow the NIH and
the NIA to adequately fund new and existing research projects,
accelerating progress toward findings which could prevent, treat, slow
the progression or even possibly cure conditions related to aging.
The National Institute on Aging (NIA) at NIH leads the national
scientific effort to understand the nature of aging in order to promote
the health and well-being of older adults. Congress established the NIA
in 1974 to conduct research on aging processes, age-related diseases,
and special problems and needs of the aged; train and develop research
scientists; provide research resources; and disseminate information on
health and research advances. NIA is also the primary Federal agency on
Alzheimer's disease research. The NIA has been at the forefront of some
of the most important advances in aging research and translational
programs, including:
--Development of the drug-eluting coronary stent, used to open
arterial blockages in the heart during angioplasty. Nearly two
million people worldwide have received these stents, which
reduce subsequent narrowing rates to three to 6 percent.
--The NIA's Diabetes Prevention Program demonstrated that diet and
exercise were the most effective ways to reduce the risk of
diabetes in high-risk older people. The clinical trial
intervention showed a 71 percent reduction in diabetes among
participants 60 and older.
--Karlene Ball, an NIA grantee, developed Useful Field of View
(UFOV), which is the area where someone can extract visual
information at a glance without head or eye movements. Research
found that training UFOV can prospectively reduce automobile
crash rates by half. Several State Motor Vehicle Departments
are using and testing UFOV, and Allstate Insurance Company and
State Farm offer discounts with this training.
--NIA-funded research led by Mary Tinetti, M.D., of the Yale
University School of Medicine found that training clinical
staff in falls prevention practices and strategies can help
reduce serious falls by 9 percent and the need for related
medical care by 11percent among seniors aged 70 and older,
reducing the incidence and cost of hospitalizations.
--Researchers from the Alzheimer's Disease Neuroimaging Initiative
showed that changes in the levels of certain proteins in
cerebrospinal fluid may correlate with the risk and progression
of Alzheimer's disease. These biomarkers may be used in the
future to identify individuals at risk of developing the
disease. In addition, measuring amyloid in the brain may prove
promising as a diagnostic tool.
--NIA-funded clinical trials REACH I and REACH II developed and
tested strategies for helping caregivers manage the stress and
emotional burden of caring for people with dementia. The first
study showed a significant improvement in caregivers' sense of
burden, social support, depression and health, as well as in
care recipients' behavior problems and mood. The U.S.
Department of Veterans Affairs successfully used REACH
strategies in a demonstration project with 19 of its Home Based
Primary Care programs, which treat frail individuals with
dementia and caregivers in their homes, and it is now
considering using REACH throughout its system. Additionally,
the REACH OUT program at the Administration on Aging is
beginning to implement these strategies through local social
service agencies.
Research toward healthier aging has never been more critical for so
many Americans. Older Americans now make up the fastest growing segment
of the population. According to the U.S. Census Bureau, the number of
people age 65 and older will more than double between 2010 and 2050 to
88.5 million, or 20 percent of the population, and those 85 and older
will increase three-fold, to 19 million. Diseases such as type 2
diabetes, cancer, neurological diseases, heart disease, and
osteoporosis that largely occur late in life are increasingly driving
the need for healthcare services in this country. Many other dreaded
diseases of aging like Alzheimer's disease are expected to become more
prevalent as the number of older Americans increases. We believe that
preventing, treating or curing diseases of aging is perhaps the single
most effective strategy available to reduce national spending on health
care.
Consider that the average 75-year old has three chronic health
conditions and takes five prescription medications. Six diseases- heart
disease, stroke, cancer, diabetes, Alzheimer's and Parkinson's
diseases--cost the U.S. over $1 trillion each year. The number of
Americans age 65 and older with Alzheimer's disease is projected to
more than double over the next 17 years. Cancer incidence is projected
to increase by about 45 percent between 2010-2030, largely because of
cancer diagnoses in older Americans and minorities. By 2030, people
aged 65 and older will represent 70 percent of all cancer diagnoses in
the U.S.
The rising tide of chronic diseases of aging threatens to overwhelm
the U.S. health care system in the coming years. Research which leads
to a better understanding of the aging process and human vulnerability
to age-related diseases could be the key to helping Americans live
longer, more productive lives, and simultaneously reduce the need for
care to manage costly chronic diseases. Scientists who study aging now
generally agree that aging is malleable and capable of being slowed.
Rapid progress in recent years toward understanding and making use of
this malleability has paved the way for breakthroughs that could
increase human health in later life by opposing the primary risk factor
for virtually every disease we face as we grow older--aging itself.
Better understating of this ``common denominator'' of disease could
usher in a new era of preventive medicine, enabling interventions that
stave off everything from dementia to cancer to osteoporosis. As we now
confront unprecedented aging of our population and staggering increases
in chronic age-related diseases and disabilities, a modest extensions
of healthy lifespan could produce outsized returns of extended
productivity, reduced caregiver burdens, lessened Medicare spending,
and more effective healthcare in future years.
The NIA leads national research efforts within the NIH to better
understand the aging process and ways to better maintain the health and
independence of Americans as they age. NIA is poised to accelerate the
scientific discoveries. The science of aging is showing increasing
power to address the leading public health challenges of our time.
Leaders in the biology of aging believe it is now realistically
possible to develop interventions that slow the aging process and
greatly reduce the risk of many diseases and disabilities, including
cancer, diabetes, Alzheimer's disease, vision loss and bone and joint
disorders. While there has been great progress in aging research, a
large gap remains between promising basic research and healthcare
applications. Closing that gap will require considerable focus and
investment. Key aging processes have been identified by leading
scientists as potentially yielding crucial answers in the next 3-10
years. These include stress response at the cellular level, cell
turnover and repair mechanisms, and inflammation.
A central theme in modern aging research--perhaps its key insight--
is that the mutations, diets, and drugs that extend lifespan in
laboratory animals by slowing aging often increase the resistance of
cells, and animals, to toxic agents and other forms of stress. These
discoveries have two main implications, each of which is likely to lead
to major advances in anti-aging science in the near future. First is
the suggestion that stress resistance may itself be the facilitator
(rather than merely the companion) of the exceptional lifespan in these
animal models, hinting that studies of agents that modulate resistance
to stress could be a potent source of valuable clinical leverage and
preventive medicines. Second is the observation that the mutations that
slow aging augment resistance to multiple varieties of stress--not just
oxidation, or radiation damage, or heavy metal toxins, but rather
resistance to all of these at the same time.
The implication is that cells have ``master switches,'' which, like
rheostats that can brighten or dim all lights in a room, can tweak a
wide range of protective intracellular circuits to tune the rate of
aging differently in long-lived versus short-lived individuals and
species. If this is correct, research aimed at identifying these master
switches, and fine-tuning them in ways that slow aging without unwanted
side-effects, could effectively postpone all of the physiological
disorders of aging through manipulation of the aging rate itself.
Researchers have formulated, and are beginning to pursue, new ways to
test these concepts by analysis of invertebrates, cells lines,
laboratory animals and humans, and by comparing animals of species that
age more quickly or slowly.
One hallmark of aging tissues is their reduced ability to
regenerate and repair. Many tissues are replenished by stem cells. In
some aged tissues, stem cell numbers drop. In others, the number of
stem cells changes very little--but they malfunction. Little is
currently known about these stem cell declines, but one suspected cause
is the accumulation of ``senescent'' cells. Cellular senescence stops
damaged or distressed cells from dividing, which protects against
cancer. At advanced ages, however, the accumulation of senescent cells
may limit regeneration and repair, a phenomenon that has raised many
questions. Do senescent cells, for instance, alter tissue
``microenvironments,'' such that the tissue loses its regenerative
powers or paradoxically fuel the lethal proliferation of cancer cells?
A robust research initiative on these issues promises to illuminate the
roots of a broad range of diseases and disabling conditions, such as
osteoporosis, the loss of lean muscle mass with age, and the age-
related degeneration of joints and spinal discs. The research is also
essential for the development of stem cell therapies, the promise of
which has generated much public excitement in recent years. This is
because implanting stem cells to renew damaged tissues in older people
may not succeed without a better understanding of why such cells lose
vitality with age. Importantly, research in this area would also help
determine whether interventions that enhance cellular proliferative
powers would pose an unacceptable cancer risk.
Acute inflammation is necessary for protection from invading
pathogens or foreign bodies and the healing of wounds, but as we age
many of us experience chronic, low-level inflammation. Such insidious
inflammation is thought to be a major driver of fatal diseases of
aging, including cancer, heart disease, and Alzheimer's disease, as
well as of osteoporosis, loss of lean muscle mass after middle age,
anemia in the elderly, and cognitive decline after 70. Just about
everything that goes wrong with our bodies as we age appears to have an
important inflammatory component, and low-level inflammation may well
be a significant contributor to the overall aging process itself. As
the underlying mechanisms of age-related inflammation are better
understood, researchers should be able to identify interventions that
can safely curtail its deleterious effects beginning in mid-life,
broadly enhancing later-life, and with negligible risk of side effects.
While important advances have been made toward understanding how
aging is linked to disease in an effort to add healthy years to life,
such a goal cannot be achieved in a timely way without financial
support. An increase in funding for aging research is urgently needed
to enable scientists to capitalize on the field's recent exciting
discoveries. For the past year and a half, the Alliance for Aging
Research, has led the Healthspan Campaign--an awareness campaign to
educate the public and policymakers about the need to focus and
adequately fund basic research into the underlying processes of aging--
that if targeted can extend a person's healthy years of life. In
addition to increased resources, we believed that the field could
benefit from the creation of a trans-NIH initiative that could improve
the quality and pace of research that advances the understanding aging,
its impact on age-related diseases, and the development of
interventions to extend human healthspan. Throughout the first half of
2012 the Alliance and its Healthspan Campaign partners met with
leadership of the National Institute on Aging (NIA), the National
Institute of Neurological Diseases and Stroke (NINDS), the National
Institute of Arthritis Musculoskeletal and Skin Diseases (NIAMS), the
National Institute of Diabetes Digestive and Kidney Diseases (NIDDK),
the National Heart Lung and Blood Institute (NHLBI), and the National
Cancer Institute (NCI). As a result of this advocacy, in less than 6
months the NIA--through its Division of Aging Biology--took the lead in
establishing a Geroscience Interest Group (GSIG) to coordinate
discussion and action across the NIH on understanding the role aging
plays in our susceptibility to age-related diseases. Of the 27
Institutes and Centers that make up the NIH, 20 are now members of the
GSIG--making it the top interest group at the NIH.
The GSIG was written up in the March/April 2012 issue of ``The NIH
Catalyst,'' the NIH's intramural research newsletter, and Dr. Felipe
Sierra, NIA Division of Aging Biology Director and GSIG Coordinator,
was awarded an NIH Director's award for his groundbreaking work with
the GSIG. The work of the GSIG was recognized in report language in the
fiscal year 2013 Senate Labor, Health and Human Services (LHHS)
Appropriations bill. To date the GSIG has held four educational
seminars on topics ranging from age-dependent mechanisms in Alzheimer's
and Parkinson's diseases to insights on aging from Hutchinson-Gilford
Progeria Syndrome. The group convened a major workshop on inflammation
and aging in the fall of 2012 that resulted in a meaningful joint
funding proposal across several NIH institutes. Planning is now
underway for a larger and more impactful meeting in fall of 2013 on
multiple processes of aging and disease. This meeting will produce many
other promising priority areas for further collaboration.
The field of aging research is poised to make transformational
gains in the near future but we can only capitalize on this potential
if the NIH is properly resourced across institutes and centers. Few if
any areas for investing research dollars offer greater potential
returns for public health. The Alliance for Aging Research supports
funding the NIH at $32 billion in fiscal year 2014 with a minimum of
$1.4 billion in funding for the NIA specifically. This level of support
would allow the NIH and the NIA to adequately fund new and existing
research projects, accelerating progress toward findings which could
prevent, treat, slow the progression or even possibly cure conditions
related to aging. With a tsunami of age driven chronic ailments looming
as our population grows older, an increased emphasis on NIH's aging
research activities has never been more urgent, with potential to
impact so many Americans.
Therapies that delay aging would lessen our healthcare system's
dependence on a strategy of trying to address diseases of aging one at
a time, often after it is too late for meaningful benefit. They would
also address the fact that while advances in lowering mortality from
heart attack and stroke have dramatically increased life expectancy,
they have left us vulnerable to other age-related diseases and
disorders that develop in parallel, such as Alzheimer's disease,
diabetes, and frailty. Properly focused and funded research could
benefit millions of people by adding active, healthy, and productive
years to life. Furthermore, the research will provide insights into the
causes of and strategies for reducing the periods of disability that
generally occur at the end of life.
Mr. Chairman, the Alliance for Aging Research thanks you for the
opportunity to outline the challenges posed by the aging population
that lie ahead as you consider the fiscal year 2014 appropriations for
the NIH and we would be happy to furnish additional information upon
request.
______
Prepared Statement of the Alzheimer's Association
The Alzheimer's Association appreciates the opportunity to comment
on the fiscal year 2014 appropriations for Alzheimer's disease
research, education, outreach and support at the U.S. Department of
Health and Human Services.
Founded in 1980, the Alzheimer's Association is the world's leading
voluntary health organization in Alzheimer's care, support and
research. Our mission is to eliminate Alzheimer's disease and other
dementias through the advancement of research; to provide and enhance
care and support for all affected; and to reduce the risk of dementia
through the promotion of brain health. As the world's largest nonprofit
funder of Alzheimer's research, the Association is committed to
accelerating progress of new treatments, preventions and, ultimately, a
cure. Through our funded projects and partnerships, we have been part
of every major research advancement over the past 30 years. Likewise,
the Association works to enhance care and provide support for all those
affected by Alzheimer's and reaches millions of people affected by
Alzheimer's and their caregivers.
Alzheimer's Impact on the American People and the Economy
In addition to the human suffering caused by the disease,
Alzheimer's is creating an enormous strain on the health care system,
families and the Federal budget. Alzheimer's is a progressive brain
disorder that damages and eventually destroys brain cells, leading to a
loss of memory, thinking and other brain functions. Ultimately,
Alzheimer's is fatal. Currently, Alzheimer's is the sixth leading cause
of death in the United States and the only one of the top ten without a
means to prevent, cure or slow its progression. Over 5 million
Americans are living with Alzheimer's, with 200,000 under the age of
65.
A Federal commitment can lower costs and improve health outcomes
for people living with Alzheimer's today and in the future. By making
Alzheimer's a national priority, we can create the same successes that
we have been able to achieve in other diseases that have been
prioritized by the Federal Government. Leadership from the Federal
Government has helped to lower the number of deaths from other major
diseases like heart disease, HIV/AIDS, many cancers, heart disease and
stroke. While those deaths have declined, deaths from Alzheimer's have
increased 68 percent between 2000 and 2010.
Alzheimer's is the most expensive disease in America. In fact, an
NIH-funded study in the New England Journal of Medicine confirmed that
Alzheimer's is the most costly disease in America, with costs set to
skyrocket at unprecedented rates. In 2013, America is estimated to
spend $203 billion in direct costs for those with Alzheimer's,
including $142 billion in costs to Medicare and Medicaid. Average per
person Medicare costs for those with Alzheimer's and other dementias
are three times higher than those without these conditions. Average per
senior Medicaid spending is 19 times higher. A primary reason for these
high costs is that Alzheimer's makes treating other diseases more
expensive, as most individuals with Alzheimer's have one or more co-
morbidities that complicate the management of the condition(s) and
increases costs. For example, a senior with diabetes and Alzheimer's
costs Medicare 81 percent more than a senior who only has diabetes.
If nothing is done, as many as 16 million Americans will have
Alzheimer's disease by 2050 and costs will exceed $1.2 trillion (not
adjusted for inflation), creating an enormous strain on the healthcare
system, families and the Federal budget. The expense involved in caring
for those with Alzheimer's is not just a long-term problem. As the
current generation of baby boomers age, near-term costs for caring for
those with Alzheimer's will balloon, as Medicare and Medicaid will
cover more than two-thirds of the costs for their care.
With Alzheimer's, it is not just those with the disease who
suffer--it is also their caregivers and families. In 2012, 15.4 million
family members and friends provided unpaid care valued at over $216
billion. Caring for a person with Alzheimer's takes longer, lasts
longer, is more personal and intrusive, and takes a heavy toll on the
health of the caregivers themselves. More than 60 percent of
Alzheimer's and dementia caregivers rate the emotional stress of
caregiving as high or very high, with one-third reporting symptoms of
depression. Caregiving also has a negative impact on health,
employment, income and finances for countless American families. Due to
the physical and emotional toll of caregiving on their own health,
Alzheimer's and dementia caregivers had $9.1 billion in additional
health costs in 2012.
Changing the Trajectory of Alzheimer's
Until recently, there was no Federal Government strategy to address
this looming crisis. In 2010, thanks to bipartisan support in Congress,
the National Alzheimer's Project Act (NAPA) (Public Law 111-375) passed
unanimously, requiring the creation of an annually-updated strategic
National Alzheimer's Plan (Plan) to help those with the disease and
their families today and to change the trajectory of the disease for
the future. The Plan is required to include an evaluation of all
federally-funded efforts in Alzheimer's research, care and services--
along with their outcomes. In addition, the Plan must outline priority
actions to reduce the financial impact of Alzheimer's on Federal
programs and on families; improve health outcomes for all Americans
living with Alzheimer's; and improve the prevention, diagnosis,
treatment, care, institutional-, home-, and community-based Alzheimer's
programs for individuals with Alzheimer's and their caregivers. NAPA
will allow Congress to assess whether the Nation is meeting the
challenges of this disease for families, communities and the economy.
Through its annual review process, NAPA will, for the first time,
enable Congress and the American people to answer this simple question:
Did we make satisfactory progress this past year in the fight against
Alzheimer's?
As mandated by NAPA, the Secretary of Health and Human Services, in
collaboration with the Advisory Council on Alzheimer's Research, Care
and Services, developed the first-ever National Plan to Address
Alzheimer's Disease in May of 2012. The Advisory Council, composed of
both Federal members and expert non-Federal members, is an integral
part of the planning process as it advises the Secretary in developing
and evaluating the annual Plan, makes recommendations to the Secretary
and Congress, and assists in coordinating the work of Federal agencies
involved in Alzheimer's research, care, and services.
Having this Plan with measurable outcomes is important. But unless
there are resources to implement the Plan and the will to abide by it,
we cannot hope to make much progress. If we are going to succeed in the
fight against Alzheimer's, Congress must provide the resources the
scientists need. Understanding this, the President's fiscal year 2014
budget request included $80 million for research activities at the
National Institutes of Health (NIH) and $20 million for education,
outreach, and caregiver support services at the Department of Health
and Human Services (HHS). These funds are a critically needed down
payment for research and services for Alzheimer's patients and their
families.
A disease-modifying or preventive therapy would not only save
millions of lives but would save billions of dollars in health care
costs. Specifically, a treatment that delayed the onset of Alzheimer's
by 5 years (a treatment similar to anti-cholesterol drugs), would
reduce Medicare and Medicaid spending nearly in half in 2050.
Today, despite the Federal investment in Alzheimer's research, we
are only just beginning to understand what causes the disease.
Americans are growing increasingly concerned that we still lack
effective treatments that will slow, stop, or cure the disease, and
that the pace of progress in developing breakthrough discoveries is
much too slow to significantly impact this growing crisis. For every
$29,000 Medicare and Medicaid spend caring for individuals with
Alzheimer's, the National Institutes of Health (NIH) spends only $100
on Alzheimer's research. Scientists fundamentally believe that we have
the ideas, the technology and the will to develop new Alzheimer's
interventions, but that progress depends on a prioritized scientific
agenda and on the resources necessary to carry out the scientific
strategy for both discovery and translation for therapeutic
development.
Additional funding is in the NIH budget because their scientists
have determined that additional research on Alzheimer's is a priority.
Their budget request reflects the changing needs of the Alzheimer's
community and the scientific opportunity. It is vital that Congress
support the research projects the scientists at NIH deem necessary.
However, Congress does have a responsibility to direct resources to
solve the most serious problems. By every objective standard (whether
cost to Medicare/Medicaid, families caring for individuals with
Alzheimer's, or mortality rate), Alzheimer's is one of our most serious
health problems--and it will only get worse as the Baby Boomer
generation ages.
Alzheimer's is the most expensive disease in the country not just
because of the lack of adequate treatments, but also because our care
systems do not effectively address dementia and its consequences. For
too many individuals with Alzheimer's and their families, the system
has failed them, and today we are unnecessarily losing the battle
against this devastating disease. Despite the fact that an early and
documented formal diagnosis allows individuals to participate in their
own care planning, manage other chronic conditions, participate in
clinical trials, and ultimately alleviate the burden on themselves and
their loved ones, as many as half of the more than 5 million Americans
with Alzheimer's have never received a formal diagnosis. Unless we
create an effective, dementia-capable system that finds new solutions
to providing high quality care, provides community support services and
programs, and addresses Alzheimer's health disparities, Alzheimer's
will overwhelm the health care system in the coming years. For example,
people with Alzheimer's and other dementias have more than three times
as many hospital stays as other older people. Furthermore, one out of
seven individuals with Alzheimer's or another dementia lives alone and
up to half of them do not have an identifiable caregiver. These
individuals are more likely to need emergency medical services because
of self-neglect or injury, and are found to be placed into nursing
homes earlier, on average, than others with dementia. Ultimately,
supporting individuals with Alzheimer's disease and their families and
caregivers requires giving them the tools they need to plan for the
future and ensuring the best quality of life for individuals and
families affected by the disease.
For all these reasons, it is vital that we make the investments in
Alzheimer's that were laid out in the President's fiscal year 2014
budget. The President's budget requested $100 million for research and
support services because the needs of the Alzheimer's community have
grown. The Alzheimer's Association urges Congress to support the
President's budget request of $100 million for research, education,
outreach and support activities and the priorities included in the
National Alzheimer's Plan required under Public Law 111-375.
Additional Alzheimer's programs
National Alzheimer's Call Center.--The National Alzheimer's Call
Center, funded by the AoA, provides 24/7, year-round telephone support,
crisis counseling, care consultation, and information and referral
services in 140 languages for persons with Alzheimer's, their family
members and informal caregivers. Trained professional staff and
master's-level mental health professionals are available at all times.
In the 12 month period ending July 31, 2011, the Call Center handled
over 300,000 calls through its national and local partners, and its
online message board received over 40,000 visits a month. Additionally,
the Association provides a two-to-one match on the Federal dollars
received for the call center. The Alzheimer's Association urges
Congress to support $1.3 million for the National Alzheimer's Call
Center.
Healthy Brain Initiative (HBI).--The Centers for Disease Control
and Prevention's (CDC) HBI program works to educate the public, the
public health community and health professionals about Alzheimer's as a
public health issue. Although there are currently no treatments to
delay or stop the deterioration of brain cells caused by Alzheimer's,
evidence suggests that preventing or controlling cardiovascular risk
factors may benefit brain health. In light of the dramatic aging of the
population, scientific advancements in risk behaviors, and the growing
awareness of the significant health, social and economic burdens
associated with cognitive decline, the Federal commitment to a public
health response to this challenge is imperative. The fiscal year 2013
Senate Labor-HHS bill included report language commending HBI for its
leadership in bringing attention to the public health crisis of
Alzheimer's disease and for its work on cognitive impairment data
collection in 45 States, the District of Columbia and Puerto Rico.
Additionally, the committee noted that developing a population-based
surveillance system with longitudinal follow-up is a key recommendation
in the National Public Road Map to Maintaining Cognitive Health, which
was developed jointly by the CDC and the Alzheimer's Association. The
bill increased funding for HBI by $10 million in order to further
develop this system and to develop effective public health messages to
promote cognitive health in older adults. The Alzheimer's Association
urges Congress to support $11.8 million for the Healthy Brain
Initiative.
Alzheimer's Disease Supportive Services Program (ADSSP).--The ADSSP
at the AoA supports family caregivers who provide countless hours of
unpaid care, thereby enabling their family members with Alzheimer's and
dementia to continue living in the community. The program develops
coordinated, responsive and innovative community-based support service
systems for individuals and families affected by Alzheimer's. The
Alzheimer's Association urges Congress to support $13.4 million for the
Alzheimer's Disease Supportive Services Program as recommended by the
Advisory Council on Alzheimer's Research, Care and Services.
CONCLUSION
The Association appreciates the steadfast support of the
subcommittee and its priority setting activities. We look forward to
continuing to work with Congress in order to address the Alzheimer's
crisis. Alzheimer's is the costliest disease in the country and these
costs are set to increase like for none other. It is vital that
Congress supports the President's fiscal year 2014 budget request of an
additional $100 million for Alzheimer's research, education, outreach
and support activities to implement the National Alzheimer's Plan. We
ask Congress to address Alzheimer's with the same bipartisan
collaboration demonstrated in the passage of the National Alzheimer's
Project Act (Public Law 111-375) and with a commitment equal to the
scale of the crisis.
______
Prepared Statement of the American Academy of Family Physicians
The American Academy of Family Physicians (AAFP), representing
110,600 family physicians and medical students nationwide, urges the
Senate Appropriations Subcommittee on Labor, Health and Human Services,
and Education to invest in our Nation's primary care physician
workforce in the fiscal year 2014 appropriations bill to promote the
efficient, effective delivery of health care by providing these
appropriations for the Health Resources and Services Administration and
the Agency for Healthcare Research and Quality:
--At least $71 million for Health Professions Primary Care Training
and Enhancement authorized under Title VII, Section 747 of the
Public Health Service Act (PHSA);
--$10 million for Teaching Health Centers development grants (PHSA
Title VII, Sec. 749A);
--$4 million for Rural Physician Training Grants (PHSA Title VII,
Sec. 749B);
--$122.2 million for the Office of Rural Health Programs (PHSA
Sec. Sec. 301, 330A, & 338J and Sec. Sec. 711 and 1820(j),
Title XVIII of the Social Security Act (SSA));
--At least $305 million for the National Health Service Corps (PHSA
Sec. 338A, B, & I);
--$120 million for the Primary Care Extension program (PHSA
Sec. 399V-1);
--$3 million for the National Health Care Workforce Commission (ACA
Sec. 5101); and
--$434 million for the Agency for Healthcare Research and Quality
(PHSA Sec. 487(d)(3), SSA Sec. 1142).
The AAFP is one of the Nation's largest medical organizations,
representing family physicians, family medicine residents, and medical
students nationwide. Founded in 1947, our mission is to preserve and
promote the science and art of family medicine and to ensure high-
quality, cost-effective health care for patients of all ages.
HEALTH RESOURCES AND SERVICES ADMINISTRATION (HRSA)
Our Nation faces a shortage of primary care physicians. The total
number of office visits to primary care physicians is projected to
increase from 462 million in 2008 to 565 million in 2025 requiring
nearly 52,000 additional primary care physicians by 2025.\1\ HRSA is
the Federal agency charged with administering the health professions
training programs authorized under Title VII of the Public Health
Services Act and first enacted in 1963. We urge the Committee to
provide at least $7 billion for HRSA in the fiscal year 2014
appropriations bill.
Title VII Health Professions Training Programs.--In the last 50
years, Congress has revised the Title VII authority in order to meet
our Nation's changing health care workforce needs. As the only medical
specialty society devoted entirely to primary care, the AAFP is gravely
concerned that a failure to provide adequate funding for the Title VII,
Section 747 Primary Care Training and Enhancement (PCTE) program, will
destabilize education and training support for family physicians.
Between 1998 and 2008, in spite of persistent primary care physician
shortages, family medicine lost 46 training programs and 390 residency
positions, and general internal medicine lost nearly 900 positions.\2\
A study published in the Annals of Family Medicine on the impact of
Title VII training programs found that physicians who work with the
underserved in Community Health Centers and National Health Service
Corps sites are more likely to have trained in Title VII-funded
programs.\3\ Title VII primary care training grants are vital to
departments of family medicine, general internal medicine, and general
pediatrics; they strengthen curricula; and they offer incentives for
training in underserved areas. In the coming years, medical services
utilization is likely to rise given the increasing and aging population
as well as the insured status of more people. These demographic trends
will worsen family physician shortages. The AAFP urges the Committee to
increase the level of Federal funding for primary care training to at
least $71 million in fiscal year 2014 to support the continuing work of
grantees and allow for a new grant cycle.
Teaching Health Centers.--The AAFP has long called for reforms to
graduate medical education programs to encourage the training of
primary care residents in non-hospital settings where most primary care
is delivered. An excellent first step is the innovative Teaching Health
Centers program authorized under Title VII, Sec. 749A to increase
primary care physician training capacity now administered by HRSA.
Federal financing of graduate medical education has led to training
mainly in hospital inpatient settings even though most patient care is
delivered outside of hospitals in ambulatory settings. The Teaching
Health Center program provides resources to any qualified community
based ambulatory care setting that operates a primary care residency.
We believe that this program requires an investment of $10 million in
fiscal year 2014 for planning grants.
Rural Health Needs.--HRSA's Office of Rural Health focuses on key
rural health policy issues and administers targeted rural grant
programs. As the medical specialty most likely to enter rural practice,
family physicians recognize the need to dedicate resources to rural
health needs. A recent study found that medical school rural programs
(RPs) have had a significant impact on rural family physician supply
and called for wider adoption of that model to substantially increase
access to care in rural areas compared with greater reliance on
international medical graduates or unfocused expansion of traditional
medical schools.\4\ HRSA's Rural Physician Training Grant program will
help medical schools recruit students most likely to practice medicine
in rural communities. This program will help provide rural-focused
experience and increase the number of medical school graduates who
practice in underserved rural communities. The AAFP recommends that the
Committee provide $4 million for Rural Physician Training Grants in
fiscal year 2014.
Primary Care in Underserved Areas.--The National Health Service
Corps (NHSC) recruits and places medical professionals in Health
Professional Shortage Areas to meet the need for health care in rural
and medically underserved areas. The NHSC provides scholarships or loan
repayment as incentives for physicians to enter primary care and
provide health care to Americans in Health Professional Shortage Areas.
By addressing medical school debt burdens, the NHSC also helps to
ensure wider access to medical education opportunities. The AAFP
recommends that the Committee provide at least the mandatory funding of
$305 million for the NHSC in fiscal year 2014.
The AAFP has worked closely with HRSA to promote data-driven
community health center expansion. The mapping tool developed and
managed by the Robert Graham Center for Policy Studies in Family
Practice and Primary Care identifies areas in greatest need for
federally Qualified Health Centers. Since the launch of the tool on
July 1, 2010, the UDS Mapper has registered over 4,500 users and can be
found at http://www.udsmapper.org/about.cfm.
AGENCY FOR HEATLHCARE RESEARCH AND QUALITY (AHRQ)
The mission of the Agency for Healthcare Research and Quality
(AHRQ)--to improve the quality, safety, efficiency, and effectiveness
of health care for all Americans--closely mirrors AAFP's own mission.
AHRQ provides the critical evidence reviews that the AAFP and other
physician specialty societies use to produce clinical practice
guidelines. AHRQ promotes evidence-based patient safety practices. In
addition, AHRQ takes research results from NIH where they restrict
research subjects to limit the variables in clinical research and
brings the practical information to the practicing physicians who treat
patients without those clinical restrictions. AHRQ provides patient-
centered health research which improves health care quality by
providing patients and physicians with state-of-the-science information
on which medical treatments work best for a given condition. The AAFP
asks that the Committee provide at least $434 million for AHRQ in
fiscal year 2014.
Primary Care Extension Program.--The AAFP supports AHRQ's Primary
Care Extension Program to provide assistance to primary care physicians
about evidence-based therapies and techniques so that they can
incorporate them into their practice. As AHRQ develops more scientific
evidence on best practices and effective clinical innovations, the
Primary Care Extension Program will disseminate the information learned
to primary care practices across the Nation in much the same way as the
Federal Cooperative Extension Service provides small farms with the
most current agricultural information and guidance. The AAFP recommends
that the Committee provide $120 million for the AHRQ Primary Care
Extension program in fiscal year 2014.
NATIONAL HEALTH CARE WORKFORCE COMMISSION
Appointed on September 30, 2010, the 15-member National Health Care
Workforce Commission was intended to serve as a resource with a broad
array of expertise. The Commission was directed to analyze current
workforce distribution and needs; evaluate health care education and
training; identify barriers to improved coordination at the Federal,
State, and local levels and recommend ways to address them; and
encourage innovations. There is broad consensus about the waning
availability of primary care physicians in the United States, but
estimates of the severity of the regional and local shortages vary. The
AAFP supports the work of the Commission to analyze primary care
shortages and propose innovations to help produce the physicians that
our Nation needs and will need in the future. We request that the
Committee provide $3 million in fiscal year 2014 so that this important
Commission can begin this important work.
---------------------------------------------------------------------------
\1\ Petterson, S, et al. Projecting US Primary Care Physician
Workforce Needs: 2010-2015. Ann Fam Med 2012; vol.10 no. 6:503-509.
\2\ Phillips RL and Turner, BJ. The Next Phase of Title VII Funding
for Training Primary Care Physicians for America's Health Care Needs.
Ann Fam Med 2012; vol.10 no. 2:163-168.
\3\ Rittenhouse DR, et al. Impact of Title VII training programs on
community health center staffing and national health service corps
participation. Ann Fam Med 2008; vol. 6 no. 5:397-405.
\4\ Rabinowitz,HK, et al. Medical School Rural Programs: A
Comparison With International Medical Graduates in Addressing State-
Level Rural Family Physician and Primary Care Supply. Academic
Medicine, Vol. 87, No. 4/April 2012.
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______
Prepared Statement of the American Academy of Ophthalmology
EXECUTIVE SUMMARY
The American Academy of Ophthalmology requests fiscal year 2014 NIH
funding of $32 billion, which reflects a $1.38 billion, or 4.5 percent
increase, over fiscal year 2012, which consists of biomedical inflation
of 2.8 percent plus modest growth. This recommendation reflects the
minimum investment necessary to make up for the 20 percent loss in
purchasing power over the last decade, as well as the impact of the
sequester, which cut 5.1 percent or $1.6 billion from NIH's $30.8
fiscal year 2013 billion budget.
NIH, our Nation's biomedical research enterprise, is unique in
that:
--Its basic and clinical research has helped to understand the basis
of disease, thereby resulting in innovations in healthcare to
save and improve lives.
--Its research serves an irreplaceable role the private sector could
not duplicate.
--It has been shown through several studies to be a major force in
the economic health of communities across the Nation. The
latest United for Medical Research report estimates that NIH
funding supported more than 432,000 jobs in 2011, directly or
indirectly, and generated more than $62.1 billion in economic
activity.
The Academy requests National Eye Institute (NEI) funding at $730
million, commensurate with the overall NIH funding increase. The
President's budget proposes an fiscal year 2014 NEI funding reduction
of $2.1 million to a level $699 million which is unacceptable since:
--It cuts 35 competing grants. The $36 million cut in fiscal year
2013 NEI funding due to the sequester has already translated
into a loss of an estimated 90 grants--any one of which holds
the promise to save or restore vision.
--The cut jeopardizes NEI's ability to fund new and compelling
scientific ideas to advance research, which were identified
through its Audacious Goals Initiative.
--Funding at $699 million is little more than 1 percent of the $68
billion annual cost of eye disease/vision impairment in the
U.S. With the majority of the 78 million Baby Boomers turning
65 years of age this decade and facing the greatest risk of
aging eye disease, a cut jeopardizes NEI's ability to meet the
vision challenges presented by this ``Silver Tsunami.''
Congress Must Improve Upon the President's Fiscal Year 2014 Request,
Since It Cuts NEI Funding by $2.1 Million, or 0.3 Percent Below
Fiscal Year 2012, Reducing It by $8 Million Below Its Base
Fiscal Year 2010 Level
Despite the President's request increasing NIH funding by $471
million, or 1.5 percent, over the fiscal year 2012 level of $30.6
billion (net of transfers), it proposes to cut NEI by $2.1 million, or
0.3 percent, below its fiscal year 2012 level of $701.3 million (net of
transfers). Although the cut is primarily driven by an $8.9 million
reduction due to the conclusion of the NEI-sponsored Ocular
Complications of AIDS (SOCA) studies which are funded by the NIH Office
of AIDS Research, it is still a cut and drives NEI funding in the wrong
direction. The President's proposed fiscal year 2014 NEI funding level
of $699 million falls $8 million below the base fiscal year 2010 level
of $707 million, the highest NEI funding level ever prior to the
addition of American Recovery and Reinvestment Act (ARRA) funding.
Most importantly, the President's proposed fiscal year 2014 NEI cut
of $2.1 million comes after the fiscal year 2013 sequester cut of $36
million. The President's fiscal year 2014 budget would cut 35 competing
grants from NEI funding, which follows the sequester's cut of an
estimated 90 grants in fiscal year 2013--any one of which may hold the
promise to save or restore vision.
NEI is already facing enormous challenges this decade: each day,
from 2011 to 2029, 10,000 citizens will turn 65 and be at greatest risk
for eye disease; the African American and Hispanic populations are
experiencing a disproportionately higher incidence of eye disease; and
the epidemic of obesity is significantly increasing the incidence of
diabetic retinopathy and diabetic macular edema. In 2009, Congress
spoke volumes in passing S. Res. 209 and H. Res. 366, which designated
2010-2020 as The Decade of Vision. With the fiscal year 2014 LHHS
spending bill, Congress can act upon its past resolutions regarding
vision and assure that NEI is adequately funded to meet these
challenges.
The Academy also requests NEI funding at $730 million since our
Nation's investment in vision health is an investment in overall
health. NEI's breakthrough research is a cost-effective investment,
since it is leading to treatments and therapies that can ultimately
delay, save, and prevent health expenditures, especially those
associated with the Medicare and Medicaid programs. It can also
increase productivity, help individuals to maintain their independence,
and generally improve the quality of life, especially since vision loss
is associated with increased depression and accelerated mortality.
The very health of the vision research community is also at stake
with a decrease in NEI funding. Not only will funding for new
investigators be at risk, but also that of seasoned investigators,
which threatens the continuity of research and the retention of trained
staff, while making institutions more reliant on bridge and
philanthropic funding. If an institution needs to let staff go, that
usually means a highly-trained person is lost to another area of
research or an institution in another State, or even another country.
The proposed reduction in NEI funding threatens the United States'
leadership in biomedical research in general, and vision research,
specifically.
$730 Million Fiscal Year 2014 Funding Enables NEI To Pursue Audacious
Goals in Vision Research
The NEI is in the middle of a novel planning initiative to identify
long-term, 10-year goals in vision research. Under the auspices of the
National Advisory Eye Council, this expansion of NEI program planning
is designed to engage and energize the vision research community and
help the NEI establish the most compelling research priorities by
identifying one or more ``audacious goals.'' Most recently, NEI hosted
200 representatives from every sector of the vision community, as well
as Government scientists and regulators from various disciplines at the
NEI's Audacious Goals Development meeting. NIH Director Francis
Collins, M.D., Ph.D., was very enthusiastic about this initiative and
urged the attendees to have a ``bold vision for vision'' by describing
NEI's long tradition of leading in the biomedical research arena,
including:
--identifying more than 500 genes associated with vision loss, which
is one-quarter of all genes discovered to date; and
--funding the successful human gene therapy trial for patients with
Leber Congenital Amaurosis, in which treated patients have
experienced vision improvement.
The meeting's discussion topics were built around the 10 winning
submissions from a pool of nearly 500 entries selected through NEI's
Audacious Goals in Vision Research and Blindness Rehabilitation
Challenge, a competition for bold and novel ideas to dramatically
advance vision science. These ideas included restoring light
sensitivity to the blind through gene-based therapies and visual
prosthetics, pinpoint correction of defective genes, and growing
healthy tissue from stem cells for ocular tissue transplants.
Translating these and other research ideas into safe and effective
treatments to save and restore vision requires adequate funding.
As a result of past funding, the NEI has made great strides in
determining the genetic basis of age-related macular degeneration
(AMD)--the leading cause of blindness and a disease for which very
little could be done just a few short years ago. NEI's AMD Gene
Consortium, a network of international investigators, has just
discovered seven new regions of the human genome--called loci--that are
associated with increased risk of AMD. They also confirmed 12 loci
already identified in previous studies. These loci implicate a variety
of biological functions, including regulation of the immune system,
maintenance of cellular structure, growth and permeability of blood
vessels, lipid metabolism, and atherosclerosis. By understanding the
genetic basis of the disease and underlying disease mechanisms, NEI can
develop appropriate diagnostic and therapies.
As an example of NEI-supported research that saves vision, in
February 2013 the Food and Drug Administration (FDA) approved an
implanted retinal prosthesis to treat adult patients with advanced
retinitis pigmentosa (RP), a rare genetic condition that damages the
retina and leads to blindness. A small video camera mounted on a pair
of glasses sends images to a video processing unit that converts them
to electronic data that is wirelessly transmitted to an array of
electrodes implanted onto the retina. The device is enabling those who
are otherwise completely blind to identify doors, crosswalks, and even
utensils on a table. Although this ``Bionic Eye'' may have been a
fantasy just a few short years ago, the NEI has always envisioned the
future. Funding must be adequate for it to successfully pursue its goal
of saving and restoring vision.
Blindness and Vision Loss is a Growing Public Health Problem That
Individuals Fear and Would Trade Years of Life To Avoid
The NEI estimates that more than 38 million Americans age 40 and
older experience blindness, low vision, or an age-related eye disease
such as AMD, glaucoma, diabetic retinopathy, or cataracts. This is
expected to grow to more than 50 million Americans by year 2020.
Although the NEI estimates that the current annual cost of vision
impairment and eye disease to the U.S. is $68 billion, this number does
not fully quantify the impact of indirect healthcare costs, lost
productivity, reduced independence, diminished quality of life,
increased depression, and accelerated mortality. NEI's proposed fiscal
year 2014 funding of $699 million reflects just a little more than 1
percent of this annual cost of eye disease. The continuum of vision
loss presents a major public health problem, as well as a significant
financial challenge to both the public and private sectors.
Vision loss also presents a real fear to most citizens:
--In public opinion polls over the past 40 years, Americans have
consistently identified fear of vision loss as second only to
fear of cancer. NEI's Survey of Public Knowledge, Attitudes,
and Practices Related to Eye Health and Disease reported that
71 percent of respondents indicated that a loss of their
eyesight would rate as a ``10'' on a 1 to 10 scale, meaning
greatest impact on their life.
--In patients with diabetes, going blind or experiencing vision loss
rank among the top four concerns about the disease. These
patients are so concerned about vision loss diminishing their
quality of life that those with nearly perfect vision (20/20 to
20/25) would be willing to trade 15 percent of their remaining
life for ``perfect vision,'' while those with moderate
impairment (20/30 to 20/100) would be willing to trade 22
percent of their remaining life for perfect vision. Patients
who are legally blind from diabetes (20/200 to 20/400) would be
willing to trade 36 percent of their remaining life to regain
perfect vision.
The Academy Urges Congress To Fund NIH At $32 Billion, NEI at $730
Million, in Fiscal Year 2014 To Ensure the Momentum of
Research, To Retain Trained Personnel, and Maintain U.S.
Leadership
About the American Academy of Ophthalmology
The American Academy of Ophthalmology is the largest national
membership association of Eye M.D.s. Eye M.D.s are ophthalmologists,
medical and osteopathic doctors who provide comprehensive eye care,
including medical, surgical and optical care. More than 90 percent of
practicing U.S. Eye M.D.s are Academy members, and the Academy has more
than 7,000 international members.
______
Prepared Statement of the American Academy of Physician Assistants
On behalf of the 90,000 clinically practicing physician assistants
in the United States, the American Academy of Physician Assistants
(AAPA) is pleased to submit comments on fiscal year 2014 appropriations
for Physician Assistant (PA) educational programs that are authorized
through Title VII of the Public Health Service Act. AAPA respectfully
request's the Senate Appropriations Committee to approve funding at
existing levels for the Title VII health professions education
program--$264,400,000, with an allocation of 15 percent of the Primary
Care Training and Enhancement program line for physician assistant
training.
Title VII Health Professions Programs are essential to placing
health professionals in medically underserved communities. A study
published in the New York Times has shown we are currently short 9,000
primary care physicians, and that number will grow to 65,000 primary
care physicians in 15 years. According to the Health Resources and
Services Administration (HRSA), an additional 31,000 health care
practitioners are needed to alleviate existing professional shortages.
Title VII funding encourages greater numbers of students to enter PA
educational programs and to go into primary care, while increasing
access to care for millions of Americans who live in medically
underserved areas.
Federal support for Title VII is authorized through section 747 of
the Public Health Service Act. It is the only continuing Federal
funding available to PA educational programs.
In 2012, 12 PA programs received $2.3 million (5.9 percent of the
total primary care medicine budget of $38.9 million) in Title VII
funding, which was directed to primary care education and training
programs designed to prepare PAs for practice in urban or rural
medically underserved areas. Additionally, these funds were directed to
supporting programs that assist Veteran's in their transition into
becoming PAs in the civilian workforce. While the purview of the Title
VII programs grant funding has expanded to include assisting returning
combat veterans, the funds to PA programs from 2011 to 2012 has
decreased by $879,000. More reductions to this budget will hurt new PA
programs that need these funds to help with student recruitment,
faculty development, and establishing clinical rotation cites.
Diverse clinical rotation sites and recruitment programs are
critical to PA education and are paramount to the Title VII primary
care medicine program. A review of PA graduates from 1990--2009
demonstrates that PAs who have graduated from PA educational programs
supported by Title VII are 67 percent more likely to be from
underrepresented minority populations and 47 percent more likely to
work in a rural health clinic than graduates of programs that were not
supported by Title VII.
Title VII programs are essential to the development and training of
primary health care professionals and, in turn, provide increased
access to care by promoting health care delivery in medically
underserved communities. We wish to thank the members of this
subcommittee for your historical role in supporting funding for the
health professions programs, and we hope that we can count on your
support to augment funding to these important programs in fiscal year
2014.
Overview of Physician Assistant Education
The existing 170 accredited physician assistant educational
programs are all located within schools of medicine or health sciences,
universities, teaching hospitals, and the Armed Services. All PA
educational programs are accredited by the Accreditation Review
Commission on Education for the Physician Assistant.
The typical PA program consists of 26 months of instruction, and
the typical student has a bachelor's degree and about 4 years of prior
health care experience. The PA curriculum includes 340 hours of basic
sciences and nearly 1,600 hours of clinical medicine. On average,
students devote more than 2,000 hours, or 50 to 55 weeks, to clinical
education, divided between primary care medicine--family medicine,
internal medicine, pediatrics, and obstetrics and gynecology--and
various specialties, including surgery and surgical specialties,
internal medicine subspecialties, emergency medicine, and psychiatry.
After graduation from an accredited PA program, physician
assistants must pass a national certifying examination developed by the
National Commission on Certification of Physician Assistants. To
maintain certification, PAs must log 100 continuing medical education
hours every 2 years, and they must take a recertification exam every 6
years.
Physician Assistant Practice
Physician assistants (PAs) are licensed health professionals who
practice medicine as members of a team with their supervising
physicians. PAs exercise autonomy in medical decisionmaking and provide
a broad range of medical and therapeutic services to diverse
populations in rural and urban settings. In all 50 States, PAs carry
out physician-delegated duties that are allowed by law and within the
physician's scope of practice and the PA's training and experience.
Additionally, PAs are delegated prescriptive privileges by their
physician supervisors in all 50 States, the District of Columbia, and
Guam. This allows PAs to practice in rural, medically underserved areas
where they are often the only full-time medical provider.
PAs in Primary Care
An estimated 30,000 PAs (30 percent of the profession) work in
primary care across the nation--37 percent work in private practice
(both physician group and solo practices); 3.1 percent practice in
community health centers, 2.7 percent practice in certified rural
health clinics, and 2.1 percent work in a federally qualified health
center.
PAs are also one of three primary care providers who work in the
National Health Service Corps (NHSC). The NHSC is an important Federal
program with nearly 10,000 healthcare providers, like PAs, who benefit
from the program's loan-forgiveness and scholarships awards to those
providers and students who commit 2 years to provide medical, dental
and mental healthcare in medically underserved areas.
Additionally, an estimated 2,790 PAs proudly work in community
health centers (CHCs) around the country, some as CHC medical
directors. Community health centers provide cost-effective healthcare
throughout the country and serve as medical homes for millions in
medically underserved areas. CHCs offer a wide variety of healthcare
services through team-based care, providing high quality healthcare to
CHC patients and significantly reducing medical expenses.
Critical Role of Title VII Public Health Service Act Programs
In its February 2012 report to Congress, HRSA's Advisory Committee
on Training in Primary Care Medicine and Dentistry wrote: ``The Title
VII, section 747 grant programs have brought improvements in primary
care education, faculty development, and workforce capacity. They have
helped to identify and disseminate best practices to programs,
accrediting bodies, and other stakeholders. These grants have permitted
the development of innovative programs that benefit medical trainees
throughout the country. Additionally, Title VII, section 747 grants are
the foundation for programs that foster among academic leaders and
trainees a sense of duty to provide care for underserved communities
and populations.''
Title VII programs are the only Federal educational programs that
are designed to address the supply and distribution imbalances in the
health professions. Since the establishment of Medicare, the costs of
physician residencies, nurse training, and some allied health
professions training have been paid through Graduate Medical Education
(GME) funding; however, GME has never been available to support PA
education. More importantly, GME was not intended to generate a supply
of providers who are willing to work in the Nation's medically
underserved communities--the purpose of Title VII.
Furthermore, Title VII programs seek to recruit students who are
from underserved minority and disadvantaged populations, which is a
critical step towards reducing persistent health disparities among
certain racial and ethnic U.S. populations. Research shows racial and
ethnic health disparities cost the economy more than $230 billion in
lost productivity and up to $1.24 trillion in indirect costs over 3
years; and studies have found that health professionals from
disadvantaged regions of the country are three to five times more
likely to return to underserved areas to provide care which would help
alleviate the current health disparity crisis in America.
Support for educating PAs to practice in underserved communities is
particularly important given the market demand for physician
assistants. Title VII funding is a critical link in addressing the
natural geographic mal-distribution of health care providers by
exposing students to underserved sites during their training, where
they frequently choose to practice following graduation. Currently, 36
percent of PAs met their first clinical employer through their clinical
rotations.
Supplementary Recommendations on fiscal year 2014 Funding
The American Academy of Physician Assistants urges members of the
Appropriations Committee to consider the inter-dependency of all public
health agencies and programs when determining funding for fiscal year
2014. For instance, while it is critical, now more than ever, to fund
clinical research at the National Institutes of Health (NIH) and to
have an infrastructure at the Centers for Disease Control and
Prevention (CDC) that ensures a prompt response to an infectious
disease outbreak or bioterrorist attack, the good work of both of these
agencies will go unrealized if the Health Resources and Services
Administration (HRSA) is inadequately funded.
HRSA administers the ``people'' programs, such as Title VII, that
bring the results of cutting edge research at NIH to patients through
providers such as PAs who have been educated in Title VII-funded
programs. Likewise, the CDC is heavily dependent upon an adequate
supply of health care providers to be sure that disease outbreaks are
reported, tracked, and contained.
Thank you for the opportunity to present the American Academy of
Physician Assistants' views on fiscal year 2014 appropriations
concerning HRSA's Title VII Health Professions Program.
______
Prepared Statement of the American Alliance of Museums
Chairman Harkin, Ranking Member Moran, and members of the
subcommittee, thank you for allowing me to submit this testimony. My
name is Ford Bell and I serve as President of the American Alliance of
Museums. I also submit this testimony on behalf of the larger museum
community--including the American Association for State and Local
History, the Association of Art Museum Directors, the Association of
Science-Technology Centers, the Association of Science Museum
Directors, the Association of Zoos and Aquariums, the Association of
Children's Museums, the American Public Gardens Association, and
Heritage Preservation--to request that the subcommittee make a renewed
investment in museums in fiscal year 2014. We urge you to fully fund
the Office of Museum Services (OMS) at the Institute of Museum and
Library Services (IMLS) at its authorized level of $38.6 million.
The Alliance is proud to represent the full range of our Nation's
museums--including aquariums, art museums, botanic gardens, children's
museums, culturally specific museums, historic sites, history museums,
maritime museums, military museums, natural history museums,
planetariums, presidential libraries, science and technology centers,
and zoos, among others--along with the professional staff and
volunteers who work for and with museums. We are honored to work on
behalf of the country's 17,500 museums that employ 400,000 people and
that annually spend more than $2 billion on educational programming,
deliver 18 million instructional hours to students and teachers, and
directly contribute $21 billion to their local economies.
IMLS is the primary Federal agency that supports the Nation's
museums, and OMS awards grants to help museums digitize, enhance and
preserve their collections, provide teacher training, and create
innovative, cross-cultural and multi-disciplinary programs and exhibits
for schools and the public. The 2012-2016 IMLS Strategic Plan lists
clear priorities: placing the learner at the center of the museum
experience, promoting museums as strong community anchors, supporting
museum stewardship of their collections, advising the President and
Congress on how to sustain and increase public access to information
and ideas, and serving as a model independent Federal agency maximizing
value for the American public. IMLS is indeed a model Federal agency.
In late 2010, a bill to reauthorize IMLS for 5 years was enacted
(by voice vote in the House and unanimous consent in the Senate). The
bipartisan reauthorization included several provisions proposed by the
museum field, including enhanced support for conservation and
preservation, emergency preparedness and response, and statewide
capacity building. The reauthorization also specifically supports
efforts at the State level to leverage museum resources, including
statewide needs assessments and the development of State plans to
improve and maximize museum services throughout the State. The bill
(now Public Law 111-340) authorized $38.6 million for the IMLS Office
of Museum Services to meet the growing demand for museum programs and
services.
The final, post-sequestration, fiscal year 2013 funding level for
OMS of $29,245,034 represents a nearly 17 percent cut from the fiscal
year 2010 appropriation of $35,212,000. However, President Obama's
fiscal year 2014 budget proposes to partially restore these cuts by
requesting $32,923,270 for the Office of Museum Services. We strongly
applaud the increased request, especially under current budgetary
constraints.
To be clear, museums are essential in our communities for many
reasons:
--Museums are key education providers.--They design exhibitions,
educational programs, classroom kits, and online resources in
coordination with State, local and common core curriculum
standards in math, science, art, literacy, language arts,
history, civics and government, economics and financial
literacy, geography, and social studies. Museums also offer
experiential learning opportunities, STEM education, youth
training, and job preparedness. They reach beyond the scope of
instructional programming for schoolchildren by also providing
critical teacher training. There is a growing consensus that
whatever the new educational era looks like, it will focus on
the development of a core set of skills: critical thinking, the
ability to synthesize information, the ability to innovate,
creativity, and collaboration. Museums are uniquely situated to
help learners develop these core skills.
--Museums create jobs and support local economies.--Museums serve as
economic engines, bolster local infrastructure, and spur
tourism. Both the U.S. Conference of Mayors and the National
Governors Association have noted that cultural assets such as
museums are essential to attracting businesses, a skilled
workforce, and local and international tourism.
--Museums address community challenges.--Many museums offer programs
tailored to seniors, veterans, children with special needs,
persons with disabilities, and more, greatly expanding their
reach and impact. For example, some have programs designed
specifically for children on the autism spectrum, some are
teaching English as a Second Language, and some are working
directly with Alzheimer's patients. Many museums facilitate job
training programs, provide vegetable gardens for low-income
communities, or serve as locations for supervised visits
through the family court system. In 2012, more than 1,800
museums participated in the Blue Star Museums initiative,
offering free admission to all active duty and reserve military
personnel and their families from Memorial Day through Labor
Day.
--Digitization and traveling exhibitions bring museum collections to
underserved populations.--Teachers, students, and researchers
benefit when cultural institutions are able to increase access
to trustworthy information through online collections and
traveling exhibits. Most museums, however, need more help in
digitizing collections.
Grants to museums are highly competitive and decided through a
rigorous, peer-reviewed process. Even the most ardent deficit hawks
view the IMLS grant-making process as a model for the Nation. It would
take approximately $129 million to fund all the grant applications that
IMLS received from museums in 2012. But given the significant budget
cuts, many highly-rated grant applications go unfunded each year:
--Only 31 percent of Museums for America/Conservation Project Support
projects were funded;
--Only 19 percent of National Leadership/21st Century Museum
Professionals/Sparks Ignition Grants for Museums/Connecting to
Collections Implementation projects were funded;
--Only 61 percent of Native American/Hawaiian Museum Services
projects were funded; and
--Only 33 percent of African American History and Culture projects
were funded.
It should be noted that each time a museum grant is awarded,
additional local and private funds are also leveraged. In addition to
the required dollar-for-dollar match required of museums, grants often
spur additional giving by private foundations and individual donors. A
recent IMLS study found that 67 percent of museums that received
Museums for America grants reported that their IMLS grant had
positioned the museum to receive additional private funding.
Here are just a few examples of how Office of Museum Services
funding is used:
--The Alliance-accredited National Czech and Slovak Museum and
Library in Cedar Rapids, Iowa will use its $148,351 Museums for
America grant awarded in 2011 to capture the personal stories
and family sagas of Czech and Slovak Cold War emigres recent
(post-Velvet Revolution) Czech and Slovak immigrants to
America. The project involves incorporating informational
content and video clips into a new permanent exhibition. Other
aspects of the project include design of a traveling exhibit, a
conference, and the publication of an issue of the museum's
journal, Slovo, which uses oral history content. This week, the
museum will also receive IMLS' National Medal for Museum and
Library Service, the country's highest honor for museums and
libraries, for its essential role in rebuilding a Cedar Rapids
neighborhood following devastating floods in 2008.
--The Alliance-accredited Edwin A. Ulrich Museum of Art at Wichita
State University in Wichita, Kansas will use its $150,000
Conservation Project Support grant awarded in 2012 to continue
restoration work on Personnages Oiseaux, the 26 x 52 foot
glass-and-marble mosaic facade created and installed by Joan
Miro. The work is touted as ``an icon for the museum, the
university, the City of Wichita, and the State of Kansas.''
--The Prince George's African American Museum & Cultural Center in
North Brentwood, Maryland will use its $147,308 African
American History and Culture grant to support a museum
curriculum and certification program. This grant, awarded in
2012, will increase professional knowledge and skills for
community college students. The museum will work in partnership
with the Workforce Development Program at Prince George's
Community College to create a curriculum model to share with
other community colleges. The certification program is a
training course revolving around a museum studies internship
project highlighting African American history. The project will
offer practical entry-level training experience to PGCC
students interested in pursuing careers in museums.
--The Birmingham Zoo in Birmingham, Alabama will use its $133,000
Museums for America grant, awarded in 2012, to support its
Africa Zoo School program, which will aim to serve 1,200
students over 2 years. In partnership with Birmingham City
Schools, the project will target all seventh-grade students
within the city. Participating students, most attending low-
performing schools, will attend a week-long ``Zoo School''
session, where they will be introduced to the Trails of Africa
exhibit and will work through a related curriculum. The exhibit
is the basis of an interdisciplinary experience to teach about
the crisis of the elephant species' survival in Africa, the
cultures of people in Africa, and the scientific and
engineering research involved in sustaining these populations.
Students will develop critical thinking and problem-solving
skills, which they can adapt to the classroom and home.
In closing, I would like to share with you for the record a recent
letter to the subcommittee requesting funding for OMS signed by 24 of
your Senate colleagues, including subcommittee members Senator Durbin,
Senator Reed, and Senator Shaheen. Thank you once again for the
opportunity to submit this testimony.
______
Prepared Statement of the American Association for Dental Research
Introduction
Mr. Chairman and members of the subcommittee, I am Peter Polverini,
Dean of the University of Michigan School of Dentistry and President of
the American Association for Dental Research (AADR). My testimony is on
behalf of AADR. I thank the subcommittee for this opportunity to
testify about the exciting advances in oral health science and for your
past support of research at the National Institutes of Health (NIH). It
is that support that makes it possible for the National Institute of
Dental and Craniofacial Research (NIDCR) to improve oral health with
the research it funds. The investments we make today will make it
easier to treat and prevent oral health diseases and disorders in the
future. Therefore, I am requesting that NIDCR receive a funding level
of $450 million. My testimony will illustrate how scientific advances
in oral health have benefited taxpayers, and explain some of the
challenges that lie ahead.
What is the American Association for Dental Research?
The AADR is a non-profit organization with more than 3,500
individual members in the United States, as well as 46 institutional
members spread across 26 States. Its mission is to: 1) advance research
and increase knowledge for the improvement of oral health; 2) support
and represent the oral health research community; and 3) facilitate the
utilization and knowledge of research findings.
Why is Oral Health Important?
Maintaining good oral health throughout life is critically
important to systemic health and overall quality of life. If oral
diseases and poor oral conditions go untreated, it becomes difficult to
eat, drink, swallow, smile, talk, and maintain proper nutrition. In
spite of the dramatic improvements in oral health over the years, it is
still a major concern. Americans spent $108 Billion on dental
expenditures in 2011, according to the Center for Medicare and Medicaid
Services (CMS). While tooth decay and gum disease remain the most
prevalent, complete tooth loss, oral cancer, and craniofacial
congenital anomalies, like cleft lip and palate are also health and
economic burdens to the American people. Tooth decay, or dental caries,
is a very common disease where the minerals in the tooth structure are
slowly dissolved out of the tooth to the point of cavitation--or a
``cavity.'' Untreated dental decay in primary teeth affects 20 percent
of children aged 2 to 5, and 25 percent of children 6 to 11. Untreated
dental decay in permanent teeth also affects 20 to 25 percent of
adults, depending on the age bracket. Moreover, we know there are
significant oral health disparities across racial, ethnic, and
socioeconomic groups.
Scientists have discovered important linkages between gum disease,
or periodontal disease, and heart disease, stroke, diabetes, and
pancreatic cancer. The consequences of inflammation may be the common
biologic factor explaining these linkages, but there are genetic
factors as well. Further research is needed to understand these
linkages, the potential for causal connections, and the effect of
intervention or treatment of the oral diseases on systemic health.
Examples of Oral Health Research and Development:
National Dental Practice-Based Research Network.--NIDCR recently
awarded a seven-year grant that consolidates its dental practice-based
research network initiative into a unified nationally coordinated
effort. The consolidated initiative, renamed The National Dental
Practice-Based Research Network (NDPBRN), is headquartered at the
University of Alabama at Birmingham (UAB) School of Dentistry. A dental
practice-based research network is an investigative union of practicing
dentists and academic scientists. The network provides practitioners
with an opportunity to propose or participate in research studies that
address daily issues in oral health care. These studies help to expand
the profession's evidence base and further refine care. According to
NIDCR Director Martha Somerman, D.D.S., Ph.D., a national coordinating
center streamlines the network structure for greater financial and
administrative efficiency.
Human papillomavirus (HPV).--HPV is frequently associated with
cervical cancer. However, HPV is responsible for a rapidly growing type
of oral cancer. According to Maura L. Gillison, MD, PhD, an oncologist
and researcher at Ohio State University, rates of infection among men
are about three times higher than among women. Oral cancers are likely
to become the most common HPV-related cancer by 2020. The International
Agency for Research against Cancer has acknowledged HPV as a risk
factor for oropharyngeal cancer. Since not enough is known about HPV-
related oropharyngeal cancers to enable potentially lifesaving
interventions, NIDCR plans to support research intended to provide a
clearer picture of HPV-related oral cancers including their incidence,
risk factors, and natural history.
Point of Care Diagnostics.--NIDCR is supporting studies aimed at
providing early, point of care, detection of both oral and systemic
conditions (e.g. oral cancer, pancreatic cancer, diabetes,
cardiovascular disease). Point of care diagnostics are often more
desirable than standard laboratory methods. Disease specific biomarkers
found in saliva have recently provided important insights on human
health. Saliva provides for noninvasive testing, potentially increasing
the number of adverse health conditions detected at an early stage.
Access to early diagnostic tests can save thousands of lives a year and
can be conducted from home or mobile facilities reaching populations
with limited access to health care. In order for the promise of
salivary diagnostics to become a reality, there needs to be further
research on the specific biomarkers that are thought to be associated
with health or certain disease states.
Cleft Lip and/or Cleft Palate.--Craniofacial anomalies such as
cleft lip and/or cleft palate (CLP) are among the most common birth
defects. Both genetic and environmental factors contribute to oral
clefts. Cleft lip is an abnormality in which the lip does not
completely form during fetal development and cleft palate occurs when
the roof of the mouth does not fully close, leaving an opening that can
extend into the nasal cavity. Genome-wide association studies (GWAS) of
cleft lip and/or cleft palate supported by NIDCR are providing
important new leads about the role genetic factors and gene-environment
interactions play in the development of these conditions. In addition,
a DNA sequencing study is underway to identify less common genetic
variants that influence the risk of developing cleft lip and/or cleft
palate.
Health Disparities Research Program.--Despite remarkable
improvements in the oral health of the American population, not
everyone in the Nation has benefited equally. Oral, dental and
craniofacial conditions remain among the most common health problems
for low-income, racial/ethnic minority, disadvantaged, disabled, and
institutionalized individuals across the life span. Dental caries,
periodontal disease, and oral and pharyngeal cancer are of particular
concern. The NIDCR Health Disparities Research Program supports studies
that provide a better understanding of the basis of health disparities
and inequalities, develops and tests interventions targeted to
underserved populations; and explores approaches to the dissemination
and implementation of effective findings to assure rapid translation
into practice, policy and action in communities.
Chronic Pain.--NIDCR is an active participant in trans-NIH work on
chronic pain. The Interagency Pain Research Coordinating Committee
(IPRCC) is a Federal advisory committee created by the Department of
Health and Human Services to enhance pain research efforts and promote
collaboration across the Government, with the ultimate goals of
advancing fundamental understanding of pain and improving pain-related
treatment strategies.
Challenges to Research
Today's investments in basic research on the fundamental causes and
mechanisms of disease will have a great impact on future advances in
health care. Investments in NIDCR are needed to support research to
define the genetic and environmental risk factors for CLP, as well as
to improve care for children with these disorders. More work needs to
be done in order to understand HPV-related cancers, especially oral
cancers given their increasing prevalence. These are just a couple of
the many research challenges confronting oral health scientists. We
urge Congress to make science a national priority.
Fiscal Year 2014 Budget Request
As you can see, Mr. Chairman, there are many research opportunities
that need to be pursued in order to improve patient care. In order for
Americans to have access to better oral health care, funding for NIH
overall, and particularly NIDCR, should be more consistent. The budget
sequestration, which went into effect March 1st, will have a
devastating impact on science. Not only does it affect grants and
cooperative agreements, but continuation awards will be reduced or in
some cases not issued, thereby impeding ongoing research. New grants
and cooperative agreements will likely be re-scoped, delayed, or
canceled. These actions have direct implications on the health and
safety of Americans. Moreover, the across-the-board cuts harm the
prospects for lasting deficit reduction by stifling a significant
driver of economic growth. We ask that you craft a solution that
recognizes NIH as a critical national priority by providing at least
$32 billion in funding in the fiscal year 2014 Appropriations bill, of
which we recommend that NIDCR be appropriated $450 million.
Thank you for this opportunity to testify. We at AADR look forward
to having the opportunity to work with the Congress and the Department
of Health and Human Services to help build a strong and successful
research enterprise.
______
Prepared Statement of the American Association of Colleges of Nursing
The American Association of Colleges of Nursing (AACN), which
serves as the Nation's leading voice for baccalaureate and graduate
nursing education, submits this testimony to the Senate Appropriations
Subcommittee on Labor, Health and Human Services, Education, and
Related Agencies regarding fiscal year 2014. AACN represents over 720
schools of nursing that educate over 400,000 students and employ more
than 16,000 full-time faculty members. Collectively, these institutions
produce approximately half of our Nation's registered nurses (RNs) and
all nurse faculty and researchers.
AACN respectfully requests that nursing education, research, and
practice are strongly supported in fiscal year 2014 through an
investment of $251 million for the Health Resources and Services
Administration's (HRSA) Nursing Workforce Development programs
(authorized under Title VIII of the Public Health Service Act [42
U.S.C. 296 et seq.]), $150 million for the National Institute of
Nursing Research (NINR) within the National Institutes of Health (NIH),
and $20 million for the Nurse-Managed Health Clinics (NMHCs) (Title III
of the Public Health Service Act). A significant investment in these
programs is paramount to ensuring that the nursing workforce can meet
the healthcare needs of our country.
Demand for Nursing in Today's Healthcare System
Current transformations within our healthcare system to both the
patient and provider sectors are creating an overwhelming demand for
nursing services. Data from the Bureau of Labor Statistics (BLS)
Employment Projections for 2010-2020, reveals that by year 2020, an
additional 1.2 million RNs will be needed to keep pace with the growing
demand. More specifically, the report anticipates that the number of
nursing jobs will grow from 2.74 million in 2010 to 3.45 million in
2020. This projection translates to 712,000 nurses, or an increase of
26 percent. In addition, BLS expects another 495,500 nurses will be
needed to replace those soon to retire.
The aging of the nursing workforce and America's patients
underscores this alarming projection. According to the report The U.S.
Nursing Workforce: Trends in Supply and Demand released by HRSA earlier
this year, of the 2.8 million RNs currently practicing in America, 34.9
percent are over age 50, and 8.5 percent are over age 60. As this large
segment of the workforce begins to retire, the Nation will soon face a
significant deficit in the number of experienced nurses available to
provide services. Concurrent with the aging of the nursing workforce is
the aging of America's Baby Boomer population. It is estimated that
over 80 million Baby Boomers reached age 65 in 2011. As this population
transitions into the Nation's oldest generation, these citizens will
continue to require more primary care services related to chronic
illness treatment, medication management, and patient education. A
significant investment must be made in the education of new nurses to
provide the Nation with the nursing services it requires.
Nursing Workforce Development Programs Answer the Call for an Expanded
RN Workforce
In light of this demand, it is imperative that steadfast support
for programs that educate future generations of nurses continues in
fiscal year 2014. Investments made in the Title VIII Nursing Workforce
Development programs today directly impact the supply and distribution
of nurses entering into the pipeline for years to come. Between fiscal
year 2007 and fiscal year 2011 alone, Title VIII programs supported
over 300,000 nurses and nursing students across the country. These
recipients are supported in academic and healthcare institutions and
contribute to the advancement of nursing education, nursing science,
and evidence-based practice. Title VIII programs bolster nursing
education at all levels, from entry-level preparation through graduate
study, and aid in the recruitment and retention of nurses in the
workforce.
Data from AACN's 2012-2013 Title VIII Student Recipient Survey
highlight the significant influence that Title VIII dollars have on
allowing more individuals to pursue nursing careers and for providing
opportunities to practice in areas experiencing the greatest need for
primary care services. The survey, which garnered responses from over
1,100 students, reflects how Title VIII programs impact the
professional nursing continuum from entry-level education through
graduation, and into long-term career planning. For example, 65 percent
of respondents report that Title VIII funding affected their decision
to enter nursing school, and 74 percent of respondents state that Title
VIII funding allowed them to attend school full-time. These programs
alleviate the financial burden that often prevents many students from
graduating into the workforce sooner.
After graduation, respondents report that practicing in a community
hospital or in an underserved community is ranked among their top
career choices. Because Title VIII assistance relieves some of the
pressure of finding a job based on salary, many students state they can
pursue practice in an area they are truly passionate about: working
with vulnerable populations to provide primary care, health promotion,
and disease prevention. Moreover, personal testimony of several survey
respondents reveals that many Title VIII recipients intend to practice
in the community in which they were educated--a direct State
investment.
However, a significant barrier preventing a greater number of
nurses from entering into the workforce is a lack of nursing faculty.
Data from AACN's 2012-2013 survey on enrollment and graduations shows
that nursing schools were forced to turn away 79,659 qualified
applications from entry-level baccalaureate and graduate nursing
programs in 2012 due primarily to faculty vacancies. In fact, AACN's
Special Survey on Faculty Vacancy for Academic Year 2012-2013 reveals
that baccalaureate and graduate nursing programs report an average
faculty vacancy rate of 7.6 percent for full-time positions and 6.8
percent for part-time positions. These vacancies limit the number of
students admitted into nursing schools, and prevent more students from
pursuing higher nursing education mandatory for career goals such as
becoming an advanced practice registered nurse (APRN) or serving as
nursing faculty. To counter this disparity, the Title VIII Nurse
Faculty Loan Program aids in increasing nursing school enrollment
capacity by supporting students pursuing graduate education, provided
they serve as faculty for 4 years after graduation.
AACN respectfully requests $251 million for the Nursing Workforce
Development programs authorized under Title VIII of the Public Health
Service Act in fiscal year 2014.
National Institute of Nursing Research Improves the Quality and
Quantity of Life
As one of the 27 Institutes and Centers at the NIH, the NINR is
dedicated to providing the health professions workforce with evidence-
based knowledge--an essential component to delivering high-quality,
cost-effective care. NINR initiatives target chronic illnesses and
communicable diseases that erode patient quality of life and the
financial stability of patients, their families, and the healthcare
system at large. For example, nurse scientists investigate how patient-
centered practices can empower individuals to improve management of
costly symptoms related to chronic illness. Moreover, while other
healthcare research focuses heavily on the curative aspect of health
care, NINR's research is largely aimed at expanding health promotion
and disease prevention. This endeavor is central to the mission of
averting any further increases in the rates of cardiac disease,
obesity, diabetes, cancer, and other devastating illnesses plaguing our
Nation's population.
One such study capturing this focus on prevention looked to reduce
rates of high blood pressure among inner-city African-American males.
This NINR-funded initiative supported a multidisciplinary healthcare
team who educated this cohort and provided annual check-ups over the
course of 3 years. The study resulted in the men practicing more
healthy habits such as quitting smoking and moderating sodium intake.
Furthermore, 44 percent of the men successfully lowered their blood
pressure to within the normal range.
NINR also funds research that advances innovation in healthcare
practices. NINR has committed to undertaking a comprehensive
examination of how genetics and genomics affect treatment options for
certain patient populations, and offers intensive programs to educate
participants on the role of molecular genetics in nursing practice.
Additionally, NINR allocates a generous 6 percent of its overall
budget to the education and training of nurse researchers, many of whom
dually serve as nurse faculty within our Nation's nursing schools. This
is crucial given the need for more doctorally prepared nurse faculty.
AACN respectfully requests $150 million for the NINR in fiscal year
2014.
Nurse-Managed Health Clinics Provide Primary Care and Clinical Training
Space
More than ever, the healthcare workforce is questioning how it will
successfully provide primary care services to millions of Americans in
need. NMHCs offer one such solution. Managed by APRNs and often staffed
by an interdisciplinary health provider team, NMHCs provide necessary
primary care services to medically underserved communities. These
centers treat patients regardless of their ability to pay, and serve as
critical access points to keep patients out of the emergency room,
saving the healthcare system millions of dollars annually. Moreover,
NMHCs allow practitioners to foster a community environment conducive
for patient teaching which is a critical facet of health promotion.
Often associated with a school, college, university, department of
nursing, federally qualified health center, or independent nonprofit
healthcare agency, NMHCs also serve as clinical education training
sites for students of nursing, medicine, physical therapy, social work,
and ancillary healthcare services. This function is an essential aspect
of these clinics as nursing schools report a lack of clinical training
sites a primary barrier to accepting more new students into their
programs.
AACN respectfully requests $20 million for the Nurse-Managed Health
Clinics in fiscal year 2014.
AACN acknowledges the challenge set before the subcommittee of
ensuring adequate healthcare services to the public while striving for
financial sustainability. AACN respectfully urges the subcommittee's
thoughtful consideration of our requests for the aforementioned
programs that are vital to a robust nursing workforce and a healthy
Nation. We ask that you do so by providing $251 million for the Title
VIII Nursing Workforce Development programs, $150 million for the
National Institute of Nursing Research, and $20 million for Nurse-
Managed Health Clinics in fiscal year 2014.
______
Prepared Statement of the American Association of Colleges of
Osteopathic Medicine
On behalf of the American Association of Colleges of Osteopathic
Medicine (AACOM), I am pleased to submit this testimony in support of
vital funding for programs at the Health Resources Services
Administration (HRSA), the National Institutes of Health (NIH), and the
Agency for Healthcare Research and Quality (AHRQ) in fiscal year 2014.
AACOM represents the administrations, faculty, and students of the
Nation's 29 colleges of osteopathic medicine at 37 locations in 28
States. Today, more than 21,000 students are enrolled in osteopathic
medical schools. Nearly one in five U.S. medical students is training
to be an osteopathic physician. AACOM strongly supports funding of $520
million for HRSA's Title VII and VIII programs under the Public Health
Service Act; funding the HRSA Teaching Health Center Graduate Medical
Education (THCGME) Development Grants at $10 million minimally;
sustainment of student scholarship and loan repayment programs for
graduate and professional students at the U.S. Department of Education
and opposition of any rescissions from the National Health Service
Corps (NHSC) Fund created under the Affordable Care Act (ACA, Public
Law 111-142 and Public Law 111-152); appropriating $3 million to fund
the National Health Care Workforce Commission; sufficient funding for
the NIH; and appropriating $430 million for the AHRQ.
Title VII
The health professions education programs, authorized under Title
VII of the Public Health Service Act and administered through HRSA,
support the training and education of health practitioners to enhance
the supply, diversity, and distribution of the health care workforce,
acting as an essential part of the health care safety net and filling
the gaps in the supply of health professionals not met by traditional
market forces. Title VII and Title VIII nurse education programs are
the only Federal programs designed to train clinicians in
interdisciplinary settings to meet the needs of special and underserved
populations, as well as increase minority representation in the health
care workforce.
According to HRSA, an additional 33,000 health care practitioners
are needed to alleviate existing health professional shortages.
Combined with faculty shortages across health professions disciplines,
racial and ethnic disparities in health care, a growing, aging
population, and the anticipated demand for increased access to care,
these needs strain an already fragile health care system. AACOM
appreciates the investments that have been made in these programs, and
we urge the subcommittee to fund $520 million for the Title VII and
VIII programs to include support for the following programs in order to
include: the Primary Care Training and Enhancement (PCTE) Program, the
Health Careers Opportunity Program (HCOP), the Centers of Excellence
(COE), the Geriatric Education Centers (GECs) and the Area Health
Education Centers (AHECs). Strengthening the workforce has been
recognized as a national priority, and the investment in these programs
recommended by AACOM will help meet the demand facing this country for
a well-trained, diverse workforce.
Teaching Health Centers Graduate Medical Education Program
HRSA's THCGME Program is the first of its kind to shift GME
training to community-based care settings that emphasize primary care
and prevention. It is uniquely positioned to provide much-needed
primary care training in underserved populations. However, because the
program is the first of its kind, most community-based settings do not
have existing infrastructures to provide this training. AACOM strongly
supports funding the THCGME Development Grants at $10 million
minimally, which was the level of the fiscal year 2013 President's
budget request. This funding would allow potential THCGME training
sites to develop the infrastructure needed to administer residency
training programs.
National Health Service Corps
Approximately 50 million Americans live in communities with a
shortage of health professionals, lacking adequate access to primary
care. Through scholarships and loan repayment, the NHSC supports the
recruitment and retention of primary care clinicians to practice in
underserved communities. The self-reported average medical educational
debt of graduates of colleges of osteopathic medicine (COMs) who
borrowed to attend medical school increased from less than $121,000 in
2000 to $205,674 for 2012 graduates, with 91 percent of 2012 graduates
reporting that they had medical education debt. Today, nearly 10,000
National Health Service Corps providers are providing primary care to
approximately 10.4 million people at nearly 14,000 health care sites in
urban, rural, and frontier areas. AACOM strongly supports the
preservation of student scholarship and loan repayment programs for
graduate and professional students. This critical funding works to
address the primary care workforce shortage and advances innovative
models of service, such as HRSA's Students to Service pilot program
which provides loan repayment assistance to medical students in their
last year of education in return for their commitment to practice.
Workforce Commission
As the United States struggles to address health care provider
shortages in certain specialties and in rural and underserved areas,
the country lacks a defined policy to address these critical issues.
The National Health Care Workforce Commission was designed to develop
and evaluate training activities to meet demand for health care
workers. Without funding, the Commission cannot identify barriers that
may create and exacerbate workforce shortages and improve coordination
on the Federal, State, and local levels. Having this type of
coordinating body in place is becoming more critical as more Americans
have insurance coverage and as the population ages, requiring access to
care. For these reasons, AACOM recommends that $3 million be
appropriated to fund the Commission.
National Institutes of Health
Research funded by the National Institutes of Health (NIH) leads to
important medical discoveries regarding the causes, treatments, and
cures for common and rare diseases, as well as disease prevention.
These efforts improve our Nation's health and save lives. To maintain a
robust research agenda, further investment will be needed. AACOM
recommends a sufficient level of funding for the NIH.
In today's increasingly demanding and evolving medical curriculum,
there is a critical need for more research geared toward evidence-based
osteopathic medicine. AACOM believes that it is vitally important to
maintain and increase funding for biomedical and clinical research in a
variety of areas related to osteopathic principles and practice,
including osteopathic manipulative medicine and comparative
effectiveness. In this regard, AACOM encourages support for the NIH's
National Center for Complementary and Alternative Medicine (NCCAM) to
continue fulfilling this essential research role.
Agency for Healthcare Research and Quality
AHRQ supports research to improve health care quality, reduce
costs, advance patient safety, decrease medical errors, and broaden
access to essential services. AHRQ plays an important role in producing
the evidence base needed to improve our Nation's health and health
care. The incremental increases for AHRQ's Patient Centered Health
Research Program in recent years, as well as the funding provided to
AHRQ in the American Recovery and Reinvestment Act of 2009 (ARRA), will
help AHRQ generate more of this research and expand the infrastructure
needed to increase capacity to produce this evidence. More investment
is needed, however, to fulfill AHRQ's mission and broader research
agenda, especially research in patient safety and prevention and care
management research. AACOM recommends $430 million for AHRQ's base,
discretionary budget. This investment will preserve AHRQ's current
programs while helping to restore its critical health care safety,
quality, and efficiency initiatives. AACOM is grateful for the
opportunity to submit its views and looks forward to continuing to work
with the subcommittee on these important matters.
______
Prepared Statement of the the American Association of Immunologists
The American Association of Immunologists (AAI), the world's
largest professional association of research scientists and physicians
who are experts on the immune system, respectfully submits this
testimony regarding appropriations for the National Institutes of
Health (NIH) for fiscal year 2014. AAI recommends an appropriation of
at least $32 billion for NIH for fiscal year 2014 to enable NIH to
support existing research projects, fund a limited number of
outstanding new ones, and ensure that the brightest students and
trainees are able to pursue careers in biomedical research in the
United States.
The Irreplaceable Role of NIH in Advancing Biomedical Research
NIH grants support the work of most biomedical scientists.\1\ The
vast majority of AAI members who work in academia depend on NIH grants
to support their research at universities, colleges and research
institutions all around the country; many also teach the medical,
graduate, and undergraduate students who will be the next generation of
physicians and researchers. Many AAI members who work in Government are
employed by the NIH; they depend on the NIH budget--as well as regular
interaction with their private sector colleagues--to advance their
work.\2\ Our industry members, who generally do not receive NIH grants
or awards, nonetheless depend on scientific discoveries that are
generated by NIH-funded researchers to catalyze translational research
or develop products. No matter where on the spectrum of biomedical
science researchers may work, they know that NIH is the lynchpin to,
and essential ingredient for, success.
NIH's irreplaceable role in our Nation's biomedical research
enterprise is indisputable among scientists. And the partnership
between Government-funded research and advancements in the private
sector has never been more clear or more necessary: in a recent article
in Forbes, three ``current and former leaders of major commercial and
academic life science institutions'' (Marc Tessier-Lavigne, Ph.D., P.
Roy Vagelos, M.D., and Elias Zerhouni, M.D.) \3\ compellingly argue
that the ``tiny'' Federal investment in NIH research has reaped
``enormous benefits--human and economic'' and that ``continued
investment in basic science is . . . key to our economic
competitiveness. America remains the world's leader in biotechnology
and pharmaceutical discovery thanks to the strength of our research
universities and other biomedical research institutions, which not only
spawn countless biotechnology companies but also have attracted the R&D
operations of most major pharmaceutical companies, which are keen to
tap into our innovation.'' Those who suggest that the private sector
can or will fill the gap left by inadequate NIH funding miss the
essential point made by these internationally recognized scientific
leaders: NIH-funded research and NIH leadership provide the foundation
upon which commercial discovery and development depend.
Inadequate NIH Funding Threatens Human Health and U.S. Preeminence in
Medicine
America's dominance in advancing basic biomedical research,
discovering urgently needed treatments and cures, and ``growing''
brilliant young scientists has been unchallenged for more than fifty
years. However, erosion of the NIH budget over the last decade has
already led to the loss of grant funding among even the most highly
qualified scientists, resulting in the closure of labs, the termination
or interruption of important research, and the emigration of talented
scientists to other countries that are investing heavily in their
futures.\4\ For those scientists who are willing and able to continue,
securing funding increasingly consumes their time--time that should be
devoted to research and to mentoring the Nation's future researchers,
inventors and innovators. And in a relatively new discipline such as
immunology, where knowledge is expanding exponentially and the
potential for even greater success is palpable, this shrinking of
Federal resources is both alarming and a squandering of precious prior
Federal investment.
The Immune System and Its Impact on Disease
The functional immune system recognizes and attacks bacteria,
viruses, and tumor cells inside the body. Many infectious agents,
including influenza, HIV/AIDS, tuberculosis, malaria, and the common
cold, challenge--and sometimes overcome--the defenses mounted by the
immune system, resulting in disease. A malfunctioning immune system can
attack our normal body tissues, causing ``autoimmune'' diseases or
disorders, including Type 1 diabetes, multiple sclerosis, rheumatoid
arthritis, asthma, allergies, inflammatory bowel diseases, and lupus.
The immune system also plays a role in many other diseases and
conditions, including cancer, Alzheimer's disease, obesity, Type II
diabetes, and cardiovascular disease. Understanding the immune response
is also crucial to developing protective vaccines against pathogens
that might cause the next pandemic, man-made and natural infectious
organisms (including plague, smallpox and anthrax) that could be used
for bioterrorism, and environmental threats that could cause or
exacerbate disease. Immunologists have made great progress in many of
these areas, but solving key scientific questions that lead to
prevention and cures cannot occur without investigator-initiated peer-
reviewed research supported by a strong, adequately funded NIH.\5\
Recent Immunological Advances and Their Promise for Tomorrow
A potential cure for cancer?--NIH-funded scientists have
demonstrated that they can remove a specific subset of immune cells (T
lymphocytes) from individuals with cancer, genetically modify them in
the laboratory to recognize the patient's own cancer cells, and
administer those cells to the patient. This personalized immunotherapy
has induced complete and partial remissions in patients in a recent
clinical experiment. Scientists have also shown similar techniques
could induce cures in other types of cancer, including metastatic
melanoma (a type of skin cancer), which is one of the ten most common
cancers.\6\
A way to stop Alzheimer's disease?--Alzheimer's disease (AD) is a
neurodegenerative disease of the brain that currently afflicts 5.4
million Americans, mostly over age 65.\7\ While the cause of AD is
unknown, researchers have recently found evidence of immune cells
present in AD lesions, systemic alteration in the immune system of AD
patients, and local inflammation in the brains of those with AD. Such
recent discoveries are leading scientists to develop immune based
therapies to treat AD patients, including monoclonal antibodies which
target AD plaques for destruction, and DNA based vaccines. Such
potential treatments are under development in many NIH-funded
laboratories.
New treatments for emerging zoonotic infectious diseases?--Zoonotic
infections (human infections acquired from a different animal species)
include avian influenza, SARS, hantavirus, dengue virus, Nipah virus,
and West Nile virus. Although the overall incidence remains low, these
infections can have high mortality rates and emerge without warning, as
evidenced by the 2012 hantavirus outbreak in Yosemite National Park and
the severe West Nile virus season.\8\ Developing preventive vaccines
for these infections has proven difficult, and current treatments are
limited. NIH-funded research on hantavirus and influenza A has shown an
association between illness/death and an inappropriately strong immune
response caused by an excessive release of cytokines (hormones of the
immune system). Researchers are exploring whether limiting the
inappropriate immune response during infection can reduce virus-induced
illness and death.\9\
The Importance of Sustained NIH Funding to Research, Scientists and Our
Nation
Despite strong Congressional support for biomedical research and
NIH, fiscal pressures in recent years have resulted in flat or reduced
NIH funding. After accounting for increases in biomedical research
inflation, these budgets have eroded NIH's purchasing power by about 20
percent since 2003. Under sequestration, with its fiscal year 2013
budget cut of about 5.1 percent, NIH's purchasing power will be further
reduced. AAI is deeply alarmed about this funding reduction and
believes it could irreparably harm ongoing research, weaken the U.S.
biomedical research enterprise, and enable global competitors to
recruit away our best scientists.
Looking Ahead: The President's fiscal year 2014 Budget
AAI greatly appreciates that the President's budget for fiscal year
2014 reflects his deep commitment to research and innovation by
providing increased funding for NIH. Although the increase ($471
million, or 1.6 percent) is small, it includes $382 million to support
an additional 351 research project grants, a welcome boost for
researchers hit hard by an NIH budget eroded by inflation and
sequestration.\10\ Although AAI believes, as stated above, that NIH
needs a budget of at least $32 billion for fiscal year 2014, we
appreciate that the President recognizes the urgent importance of
investing in biomedical research to the health and economic well-being
of the American people.
Conclusion
AAI thanks the members and staff of the subcommittee for their
strong bipartisan support for biomedical research, and urges an
appropriation of at least $32 billion for NIH for fiscal year 2014 to
fund important ongoing research, strengthen the biomedical research
enterprise, and support the thousands of scientists across the Nation
who devote their lives to finding the answers we need to prevent,
treat, and cure disease.
---------------------------------------------------------------------------
\1\ After a highly competitive peer review, NIH distributes most
(more than 80 percent) of its $30.7 billion budget to scientists who
conduct research at approximately 2,500 universities, medical schools,
and other research institutions across the United States. About 11
percent of its budget supports the work of the approximately 6,000
scientists who work in NIH's own laboratories. http://nih.gov/about/
\2\ AAI is concerned that Federal policy limits the ability of
Government scientists to attend privately sponsored scientific meetings
and conferences. See http://www.whitehouse.gov/sites/
default/files/omb/memoranda/2012/m-12-12.pdf http://www.hhs.gov/travel/
policies/2012_policy_
manual.pdf. Government scientists contribute significantly to
scientific advancement in our field. Information exchange among
scientists from Government, academia, industry and private research
institutes is absolutely essential, and any barriers to the
participation of Government scientists undermine the best interests of
science.
\3\ Dr. Lavigne is President of The Rockefeller University and
former Chief Scientific Officer for Genentech Inc.; Dr. Vagelos is
Chairman of Regeneron Pharmaceuticals and Retired Chairman and CEO of
Merck & Co., Inc.; and Dr. Zerhouni is President of Research and
Development for Sanofi and former Director of NIH. ``Legendary Drug
Industry Executives Warn U.S. Science Cuts Endanger The Future,''
Forbes online (3/6/13) http://www.forbes.com/sites/matthewherper/2013/
03/06/drug-industry-greats-say-the-u-s-must-reverse-the-cuts-to-our-
investment-in-science/
\4\ See ``U.S. cuts could lead to brain drain in medicine.'' The
Baltimore Sun, 2/23/13, http://articles.baltimoresun.com/2013-02-23/
news/bs-md-research-funding-20130221_1_nih-grants-
researchers-head-first-grant. See also Atkinson, et al. 2012,
``Leadership in Decline,'' The Information Technology and Innovation
Foundation http://www2.itif.org/2012-leadership-in-decline.pdf
\5\ NIH should robustly fund and primarily rely on individual
investigator-initiated research, in which researchers working in
institutions across the Nation submit applications to, and following
independent peer review, receive grants from, NIH. Biomedical
innovation and discovery are less likely to be achieved through ``top-
down'' science, in which the Government specifies the type of research
it wishes to fund.
\6\ See Kalos et al. 2011, ``T Cells with Chimeric Antigen
Receptors Have Potent Antitumor Effects and Can Establish Memory in
Patients with Advanced Leukemia,'' Science Translational Medicine, 3:95
http://stm.sciencemag.org/content/3/95/95ra73.short; Porter et al.
2011, ``Chimeric Antigen Receptor--Modified T Cells in Chronic Lymphoid
Leukemia,'' N England J Med 365:725-733 http://www.nejm.org/doi/full/
10.1056/NEJMoa1103849.
\7\ See http://www.alz.org/documents_custom/
2012_facts_figures_fact_sheet.pdf. The Alzheimer's Association
estimates that up to 16 million people will have Alzheimer's by 2050.
And the costs are staggering: ``In 2012, the direct costs of caring for
those with Alzheimer's . . . . will total an estimated $200 billion . .
. . Unless something is done, the costs of Alzheimer's in 2050 are
estimated to total $1.1 trillion (in today's dollars). Costs to
Medicare and Medicaid will increase nearly 500 percent.''
\8\ See http://www.cdc.gov/hantavirus/outbreaks/yosemite-national-
park-2012.html and http://www.cdc.gov/ncidod/dvbid/westnile/index.htm.
\9\ See Teijaro et al. 2011, ``Endothelial Cells Are Central
Orchestrators of Cytokine Amplification during Influenza Virus
Infection,'' Cell 146:980-991 http://www.sciencedirect.com/science/
article/pii/S009286741100941X.
\10\ Given the scarcity of funding currently available to support
ongoing and new research, AAI is concerned about the budget's
relatively large funding level for new initiatives and targeted disease
research, as well as substantial funding increases to rapidly grow some
newer programs, potentially at the expense of investigator-initiated
basic research.
---------------------------------------------------------------------------
______
Prepared Statement of the American Association of Nurse Anesthetists
FISCAL YEAR 2014 APPROPRIATIONS REQUEST SUMMARY
----------------------------------------------------------------------------------------------------------------
AANA Fiscal Year 2014
Fiscal Year 2013 Actual Fiscal Year 2014 Budget Request
----------------------------------------------------------------------------------------------------------------
HHS/HRSA/BHPr Title 8 Advanced Awaiting grant Grant allocations not $4 MM for nurse
Education Nursing, Nurse Anesthetist allocations--in fiscal specified. anesthesia education
Education Reserve. year 2012 awards
amounted to approx.
$3.5MM.
Total for Advanced Education Nursing, $60.8 MM for Advanced Not yet available for $83.925 MM for advanced
from Title 8. Education Nursing Advanced Education education nursing
postsequester estimate. Nursing.
��������������������������������������
Title 8 HRSA BHPr Nursing Education $220.4 MM postsequester Not yet available...... $251.099 MM
Programs. estimate.
----------------------------------------------------------------------------------------------------------------
About the American Association of Nurse Anesthetists (AANA) and
Certified Registered Nurse Anesthetists (CRNAs)
The AANA is the professional association for more than 45,000 CRNAs
and student nurse anesthetists, representing over 90 percent of the
nurse anesthetists in the United States. Today, CRNAs deliver
approximately 33 million anesthetics to patients each year in the U.S.
CRNA services include administering the anesthetic, monitoring the
patient's vital signs, staying with the patient throughout the surgery,
and providing acute and chronic pain management services. CRNAs provide
anesthesia for a wide variety of surgical cases and in some States are
the sole anesthesia providers in almost 100 percent of rural hospitals,
affording these medical facilities obstetrical, surgical, and trauma
stabilization, and pain management capabilities. CRNAs work in every
setting in which anesthesia is delivered, including hospital surgical
suites and obstetrical delivery rooms, ambulatory surgical centers
(ASCs), pain management units and the offices of dentists, podiatrists
and plastic surgeons.
Nurse anesthetists are experienced and highly trained anesthesia
professionals whose record of patient safety is underscored by
scientific research findings. The landmark Institute of Medicine report
To Err is Human found in 2000 that anesthesia was 50 times safer then
than in the 1980s. (Kohn L, Corrigan J, Donaldson M, ed. To Err is
Human. Institute of Medicine, National Academy Press, Washington DC,
2000.) Though many studies have demonstrated the high quality of nurse
anesthesia care, the results of a new study published in Health Affairs
led researchers to recommend that costly and duplicative supervision
requirements for CRNAs be eliminated. Examining Medicare records from
1999-2005, the study compared anesthesia outcomes in 14 States that
opted-out of the Medicare physician supervision requirement for CRNAs
with those that did not opt out. (To date, 17 States have opted-out.)
The researchers found that anesthesia has continued to grow more safe
in opt-out and non-opt-out States alike. (Dulisse B, Cromwell J. No
Harm Found When Nurse Anesthetists Work Without Supervision By
Physicians. Health Aff. 2010;29(8):1469-1475.)
CRNAs provide the lion's share of anesthesia care required by our
U.S. Armed Forces through active duty and the reserves, staffing ships,
remote U.S. military bases, and forward surgical teams without
physician anesthesiologist support. In addition, CRNAs predominate in
rural and medically underserved areas, and where more Medicare patients
live (Government Accountability Office. Medicare and private payment
differences for anesthesia services. GAO-07-463, Washington DC, Jul.
27, 2007. http://www.gao.gov/products/GAO-07-463).
Importance of and Request for HRSA Title 8 Nurse Anesthesia Education
Funding
Our profession's chief request of the subcommittee is for $4
million to be reserved for nurse anesthesia education and $83.925
million for advanced education nursing from the HRSA Title 8 program,
out of a total Title 8 budget of $251.099 million. We request that the
Report accompanying the fiscal year 2014 Labor-HHS-Education
Appropriations bill include the following language: ``Within the
allocation, the Committee encourages HRSA to allocate funding at least
at the fiscal year 2012 level for nurse anesthetist education.'' This
funding request is justified by the safety and value proposition of
nurse anesthesia, and by anticipated growth in demand for CRNA services
as baby boomers retire, become Medicare eligible, and require more
healthcare services. In making this request, we associate ourselves
with the request made by The Nursing Community and Americans for
Nursing Shortage Relief (ANSR) with respect to Title 8 and the National
Institute of Nursing Research (NINR) at the National Institutes of
Health.
The Title 8 program, on which we will focus our testimony, is
strongly supported by members of this subcommittee in the past, and is
an effective means to help address nurse anesthesia workforce demand.
In expectation for dramatic growth in the number of U.S. retirees and
their healthcare needs, funding the advanced education nursing program
at $83.925 million is necessary to meet the continuing demand for
nursing faculty and other advanced education nursing services
throughout the U.S.,. The program funds competitive grants that help
enhance advanced nursing education and practice, and traineeships for
individuals in advanced nursing education programs. It also targets
resources toward increasing the number of providers in rural and
underserved America and preparing providers at the master's and
doctoral levels, thus increasing the supply of clinicians eligible to
serve as nursing faculty, a critical need.
Demand remains high for CRNA workforce in clinical and educational
settings. A 2007 AANA nurse anesthesia workforce study found a 12.6
percent CRNA vacancy rate in hospitals and a 12.5 percent faculty
vacancy rate. The supply of clinical providers has increased in recent
years, stimulated by increases in the number of CRNAs trained. From
2002-2012, the annual number of nurse anesthesia educational program
graduates increased from 1,362 to 2,469, according to the Council on
Accreditation of Nurse Anesthesia Educational Programs (COA). The
number of accredited nurse anesthesia educational programs grew from 85
to 113. We anticipate increased demand for anesthesia services as the
population ages, the number of clinical sites requiring anesthesia
services grows, and a portion of the CRNA workforce retires.
The capacity of our 113 nurse anesthesia educational programs to
educate qualified applicants is limited by the number of faculty, the
number and characteristics of clinical practice educational sites, and
other factors--and they continue turning away hundreds of qualified
applicants. A qualified applicant to a CRNA program is a bachelor's
educated registered nurse who has spent at least 1 year serving in an
acute care healthcare practice environment. They are prepared in nurse
anesthesia educational programs located all across the country,
including Arkansas, California, Connecticut, Georgia, Kentucky,
Maryland, New York, Ohio, and Tennessee. To meet the nurse anesthesia
workforce challenge, the capacity and number of CRNA schools must
continue to grow and modernize with the latest advancements in
simulation technology and distance learning consistent with improving
educational quality and supplying demand for highly qualified
providers. With the help of competitively awarded grants supported by
Title 8 funding, the nurse anesthesia profession is making significant
progress, but more is required.
This progress is extremely cost-effective from the standpoint of
Federal funding. Anesthesia can be provided by nurse anesthetists,
physician anesthesiologists, or by CRNAs and anesthesiologists working
together. Of these, the nurse anesthesia practice model is by far the
most cost-effective, and ensures patient safety. (Hogan P et al. Cost
effectiveness analysis of anesthesia providers. Nursing Economic$, Vol.
28 No. 3, May-June 2010, p. 159 et seq.) Nurse anesthesia education
represents a significant educational cost-benefit for competitively
awarded Federal funding in support of CRNA educational programs.
Support for Safe Injection Practices and the Alliance for Injection
Safety
As a leader in patient safety, the AANA has been playing a vigorous
role in the development and projects of the Alliance for Injection
Safety, intended to reduce and eventually eliminate the incidence of
healthcare facility acquired infections. In the interest of promoting
safe injection practice, and reducing the incidence of healthcare
facility acquired infections, we associate ourselves with the AIS
recommendation.
______
Prepared Statement of the American Congress of Obstetricians and
Gynecologists
The American Congress of Obstetricians and Gynecologists (ACOG),
representing 57,000 physicians and partners in women's health care, is
pleased to offer this statement to the Senate Committee on
Appropriations, Subcommittee on Labor, Health and Human Services, and
Education. We thank Chairman Harkin, and the entire subcommittee for
the opportunity to provide comments on some of the most important
programs to women's health.
Today, the U.S. lags behind other nations in healthy births, yet
remains high in birth costs. ACOG's Making Obstetrics and Maternity
Safer (MOMS) Initiative seeks to improve maternal and infant outcomes
through investment in all aspects of the cycle of research, including
comprehensive data collection and surveillance, biomedical research,
and translation of research into evidence-based practice and programs
delivered to women and babies. ACOG supports S. 425, the Quality Care
for Moms and Babies Act, introduced by Sen. Debbie Stabenow, which
would greatly improve maternity care delivery through quality
collaboratives and quality measure development. This legislation
depends on the investments made by Congress in research and programs
that provide robust data to inform quality improvement initiatives. We
urge you to make funding of the following programs and agencies a top
priority in fiscal year 2014.
Data Collection and Surveillance at the Centers for Disease Control and
Prevention (CDC)
In order to conduct robust research, uniform, accurate and
comprehensive data and surveillance are critical. The National Center
for Health Statistics is the Nation's principal health statistics
agency and collects State data from records like birth certificates
that give us raw, vital statistics. The birth certificate is the key to
gathering vital information about both mother and baby during pregnancy
and labor and delivery. The 2003 U.S.-standard birth certificate
collects a wealth of knowledge in this area, yet not all States are
using it. States without these resources are likely underreporting
maternal and infant deaths and complications from childbirth and causes
of these deaths remain unknown. Use must be expanded to all 50 States,
ensuring that uniform, accurate data is collected nationwide. For
fiscal year 2014, ACOG requests $162 for the National Center for Health
Statistics and $18 million within that funding request to modernize the
National Vitals Statistics System, which would help States update their
birth and death records systems.
The Pregnancy Risk Assessment Monitoring System (PRAMS) at CDC
extends beyond vital statistics and surveys new mothers on their
experiences and attitudes during pregnancy, with questions on a range
of topics, including what their insurance covered, whether they had
stressful experiences during pregnancy, when they initiated prenatal
care, and what kinds of questions their doctor covered during prenatal
care visits. By identifying trends and patterns in maternal health,
researchers better understand indicators of preterm birth and other
health conditions. This data allows CDC and State health departments to
identify behaviors and environmental and health conditions that may
lead to preterm births. Only 40 States use the PRAMS surveillance
system today. ACOG requests adequate funding to expand PRAMS to all
U.S. States and territories.
Biomedical Research at the National Institutes of Health (NIH)
Biomedical research is critically important to understanding the
causes of prematurity and developing effective prevention and treatment
methods. Prematurity rates have increased almost 35 percent since 1981,
and cost the Nation $26 billion annually, $51,600 for every infant born
prematurely. Direct health care costs to employers for a premature baby
average $41,610, 15 times higher than the $2,830 for a healthy, full-
term delivery. Research into maternal morbidity, beginning with
developing a consensus definition for severe maternal morbidity, is an
important component of understanding pregnancy outcomes, including
prematurity. The National Institute on Child Health and Human
Development (NICHD) has included in its Vision Statement a goal of
determining the complex causes of prematurity and developing evidence-
based measures for its prevention within the next 10 years. Sustaining
the investments at NIH is vital to achieving this goal, and therefore
ACOG supports a minimum of $32 billion for NIH and $1.37 billion within
that funding request for NICHD in fiscal year 2014.
Adequate levels of research require a robust research workforce.
The average investigator is in his/her forties before receiving their
first NIH grant, a huge dis-incentive for students considering bio-
medical research as a career. Complicating matters, there is a gap
between the number of women's reproductive health researchers being
trained and the need for such research. Programs like the Women's
Reproductive Health Research (WRHR) Career Development program,
Reproductive Scientist Development Program (RSDP), and the Building
Interdisciplinary Research Careers in Women's Health (BIRCWH) program
all seek to address the shortfall of women's reproductive health
researchers. At least 79 percent of BIRCWH grantees go on to apply for
NIH grants, and 51 percent receive NIH grants, much higher than the
average NIH success rate. Sequestration and other budget cuts threaten
to undermine these programs at a critical juncture. For example, every
$500,000 cut to the BIRCWH program results in one less BIRCWH scholar.
A sustained investment in NIH funding will help ensure the continuation
of these programs and help mitigate the negative consequences of budget
uncertainty on the future research workforce.
Public Health Programs at the Health Resources and Services
Administration (HRSA) and the Centers for Disease Control and
Prevention (CDC)
Projects at HRSA and CDC are integral to translating research
findings into evidence-based practice changes in communities. Where NIH
conducts research to identify causes of preterm birth, CDC and HRSA
fund programs that provide resources to mothers to help prevent preterm
birth, and help identify factors contributing to preterm birth and poor
maternal outcomes. The Maternal Child Health Block Grant at HRSA is the
only Federal program that exclusively focuses on improving the health
of mothers and children. State and territorial health agencies and
their partners use MCH Block Grant funds to reduce infant mortality,
deliver services to children and youth with special health care needs,
support comprehensive prenatal and postnatal care, screen newborns for
genetic and hereditary health conditions, deliver childhood
immunizations, and prevent childhood injuries.
These early health care services help keep women and children
healthy, eliminating the need for later costly care. For example, every
$1 spent on preconception care for women with diabetes can reduce
health costs by up to $5.19 by preventing costly complications in both
mothers and babies. Every $1 spent on smoking cessation counseling for
pregnant women saves $3 in neonatal intensive care costs. The MCH Block
Grant has seen an almost $30 million decrease in funding in the past 5
years alone. ACOG urges you not to cut the MCH Block Grant any further
and for fiscal year 2014 we request $640 million for the Block Grant to
maintain its current level of services.
Family planning is essential to helping ensure healthy pregnancies
and reducing the risk of preterm birth. The Title X Family Planning
Program provides services to more than five million low-income men and
women at more than 4,500 service delivery sites. Every $1 spent on
family planning results in a $4 savings to Medicaid. Services provided
at Title X clinics accounted for $3.4 billion in health care savings in
2008 alone. ACOG supports $327 million for Title X in fiscal year 2014
to sustain its level of services.
The Healthy Start Program through HRSA promotes community-based
programs that help reduce infant mortality and racial disparities in
perinatal outcomes. These programs are encouraged to use the Fetal and
Infant Mortality Review (FIMR) which brings together ob-gyn experts and
local health departments to help specifically address local issues
contributing to infant mortality. Today, more than 220 local programs
in 42 States find FIMR a powerful tool to help reduce infant mortality,
including understanding issues related to preterm delivery. For over 20
years, ACOG has partnered with the Maternal and Child Health Bureau to
sponsor the designated resource center for FIMR Programs, the National
FIMR Program. ACOG supports $.5 million in fiscal year 2014 for HRSA to
increase the number of Healthy Start programs that use FIMR.
The Safe Motherhood Initiative at CDC works with State health
departments to collect information on pregnancy-related deaths, track
preterm births, and improve maternal outcomes. The Initiative also
promotes preconception care, a key to reducing the risk of preterm
birth. For fiscal year 2014, we recommend a sustained funding level of
at least $44 million for the Safe Motherhood Program, and re-
instatement of the preterm birth sub-line at $2 million to ensure
continued support for preterm birth research, as authorized by the
PREEMIE Act.
State and regional quality improvement initiatives encourage use of
evidence-based quality improvement projects across hospitals and
medical practices to reduce the rate of maternal and neonatal mortality
and morbidity. For example, under the Ohio Perinatal Quality
Collaborative, started in 2007 with funding from CDC, 21 OB teams in 25
hospitals have decreased scheduled deliveries between 36 and 39 weeks
gestation, in accordance with ACOG guidelines, significantly reducing
pre-term births. According to a study conducted by Avalere, the
estimated savings from initiatives aimed at reducing elective
inductions pre-39 weeks ranges from $2.4 million to $9 million a year.
S. 425, the Quality Care for Moms and Babies Act, would build on these
efforts by providing resources to States to develop and grow maternity
and perinatal quality collaboratives, and supporting the development
and implementation of additional maternity care quality measures in
Medicaid and CHIP. ACOG urges you to provide sufficient resources to
HHS to help States expand upon or establish maternity and perinatal
care quality collaborative programs.
Again, we would like to thank the Committee for its consideration
of funding for programs to improve women's health, and we urge you to
consider our MOMS Initiative in fiscal year 2014.
______
Prepared Statement of the American College of Physicians
The American College of Physicians (ACP) is pleased to submit the
following statement for the record on its priorities, as funded under
the U.S. Department of Health & Human Services, for fiscal year 2014.
ACP is the largest medical specialty organization and the second-
largest physician group in the United States. ACP members include
133,000 internal medicine specialists (internists), related
subspecialists, and medical students. Internal medicine physicians are
specialists who apply scientific knowledge and clinical expertise to
the diagnosis, treatment, and compassionate care of adults across the
spectrum from health to complex illness.
As the subcommittee begins deliberations on appropriations for
fiscal year 2014, ACP is urging funding for the following proven
programs to receive appropriations from the subcommittee:
--Title VII, Section 747, Primary Care Training and Enhancement, at
no less than $71 million;
--National Health Service Corps, $893,456,433 in discretionary
funding, in addition to the $305 million in enhanced funding
through the Community Health Centers Fund;
--National Health Care Workforce Commission, $3 million;
--Agency for Healthcare Research and Quality, $434 million; and
--Centers for Medicare and Medicaid Services, Marketplace Operations,
$803.5 million.
The United States is facing a growing shortage of physicians in key
specialties, most notably in general internal medicine and family
medicine--the specialties that provide primary care to most adult and
adolescent patients. With enactment of the Affordable Care Act (ACA),
we expect the demand for primary care services to increase with the
addition of 27 million Americans receiving access to health insurance,
once the law is fully implemented. Current projections indicate there
will be a shortage of up to 44,000 primary care physicians for adults,
even before the increased demand for health care services that will
result from near universal coverage is taken into account (Colwill JM,
Cultice JM, Kruse RL. Will generalist physician supply meet demands of
an increasing and aging population? Health Aff (Millwood). 2008 May-
Jun;27(3):w232-41. Epub 2008 Apr 29. Accessed at http://
content.healthaffairs.org/content/27/3/w232.full on 14 January 2011.).
Without critical funding for vital workforce programs, this physician
shortage will only grow worse. A strong primary care infrastructure is
an essential part of any high-functioning healthcare system, with over
100 studies showing primary care is associated with better outcomes and
lower costs of care (http://www.acponline.org/advocacy/where_we_stand/
policy/primary_shortage.pdf).
The health professions education programs, authorized under Title
VII of the Public Health Service Act and administered through the
Health Resources and Services Administration (HRSA), support the
training and education of health care providers to enhance the supply,
diversity, and distribution of the health care workforce, filling the
gaps in the supply of health professionals not met by traditional
market forces, and are critical to help institutions and programs
respond to the current and emerging challenges of ensuring all
Americans have access to appropriate and timely health services. Within
the Title VII program, we urge the subcommittee to fund the program the
Section 747, Primary Care Training and Enhancement at $71 million, in
order to maintain and expand the pipeline of primary care production
and training. The Section 747 program is the only source of Federal
training dollars available for general internal medicine, general
pediatrics, and family medicine. For example, general internists, who
have long been at the frontline of patient care, have benefitted from
Title VII training models that promoted interdisciplinary training that
helped prepare them to work with other health professionals, such as
physician assistants, patient educators and psychologists. Without a
substantial increase of funding, HRSA will not be able to carry out a
competitive grant cycle for the third year in a row for physician
training; the Nation needs new initiatives relating to increased
training in inter-professional care, the patient-centered medical home,
and other new competencies required in our developing health system.
The College urges $893,456,433 in appropriations for the National
Health Service Corps (NHSC), the amount authorized for fiscal year 2014
under the ACA; this is in addition to the $305 million in enhanced
funding the Health and Human Services Secretary has been given the
authority to provide to the NHSC through the Community Health Care
Fund. Since enactment of the ACA, the NHSC has awarded over $900
million in scholarships and loan repayment to health care professionals
to help expand the country's primary care workforce and meet the health
care needs of communities across the country and there are nearly three
times the number of NHSC clinicians working in communities across
America than there were 3 years ago, increasing Americans' access to
health care. With field strength of nearly 10,000 clinicians, NHSC
members are providing culturally competent care to more than 10.4
million people at nearly 14,000 NHSC-approved health care sites in
urban, rural, and frontier areas. The increase in funds must be
sustained to help address the health professionals' workforce shortage
and growing maldistribution. The programs under NHSC have proven to
make an impact in meeting the health care needs of the underserved, and
with more appropriations, they can do more.
We urge the subcommittee to fully fund the National Health Care
Workforce Commission, as authorized by the ACA, at $3 million. The
Commission is authorized to review current and projected health care
workforce supply and demand and make recommendations to Congress and
the Administration regarding national health care workforce priories,
goals, and polices. Members of the Commission have been appointed but
have not been able to do any work, due to a lack of funding. The
College believes the Nation needs sound research methodologies embedded
in its workforce policy to determine the Nation's current and future
needs for the appropriate number of physicians by specialty and
geographic areas; the work of the Commission is imperative to ensure
Congress is creating the best policies for our Nation's needs.
The Agency for Healthcare Research and Quality (AHRQ) is the
leading public health service agency focused on health care quality.
AHRQ's research provides the evidence-based information needed by
consumers, providers, health plans, purchasers, and policymakers to
make informed health care decisions. The College is dedicated to
ensuring AHRQ's vital role in improving the quality of our Nation's
health and recommends a budget of $434 million. This amount will allow
AHRQ to help providers help patients by making evidence-informed
decisions, fund research that serves as the evidence engine for much of
the private sector's work to keep patients safe, make the healthcare
market place more efficient by providing quality measures to health
professionals, and ultimately, help transform health and health care.
Finally, ACP is supportive of the President's request for $803.5
million for the Centers for Medicare and Medicaid Services, Marketplace
Operations in order to become fully operational by 2014 and carry out
their duties as necessary. Such funding will allow the Federal
Government to administer the insurance exchange, as authorized by the
ACA, if a State declines to establish an exchange that meets Federal
requirements. As of March 7, HHS has approved 24 States and the
District of Columbia to fully or partially run their State's exchange,
leaving 26 States which have not met approval or who have declined to
run their own State exchange. If the subcommittee decides to deny the
requested funds, it may make it much more difficult for the Federal
Government to organize a federally-facilitated exchange in those
States, raising questions about where and how their residents would get
coverage. It is ACP's belief that all legal Americans--regardless of
income level, health status, or geographic location--must have access
to affordable health insurance.
In conclusion, the College is keenly aware of the fiscal pressures
facing the subcommittee today, but strongly believes the United States
must invest in these programs in order to achieve a high performance
health care system and build capacity in our primary care workforce and
public health system. The College greatly appreciates the support of
the subcommittee on these issues and looks forward to working with
Congress as you begin to work on the fiscal year 2014 appropriations
process.
______
Prepared Statement of the American College of Preventive Medicine
The American College of Preventive Medicine (ACPM) urges the House
Labor, Health and Human Services, Education, and Related Agencies
Appropriations Subcommittee to reaffirm its support for training
preventive medicine physicians and other public health professionals by
providing an increase of $5 million in fiscal year 2014 for preventive
medicine residency training under the public health and preventive
medicine line item in Title VII of the Public Health Service Act. ACPM
also supports the recommendation of the Health Professions and Nursing
Education Coalition that $520 million be appropriated in fiscal year
2014 to support all health professions and nursing education and
training programs authorized under Titles VII and VIII of the Public
Health Service Act.
In today's healthcare environment, the tools and expertise provided
by preventive medicine physicians play an integral role in ensuring
effective functioning of our Nation's public health system. These tools
and skills include the ability to deliver evidence-based clinical
preventive services, expertise in population-based health sciences, and
knowledge of the social and behavioral determinants of health and
disease. These are the tools employed by preventive medicine physicians
who practice in public health agencies and in other healthcare settings
where improving the health of populations, enhancing access to quality
care, and reducing the costs of medical care are paramount. As the body
of evidence supporting the effectiveness of clinical and population-
based interventions continues to expand, so does the need for
specialists trained in preventive medicine.
Organizations across the spectrum have recognized the growing
demand for preventive medicine professionals. The Institute of Medicine
released a report in 2007 calling for an expansion of preventive
medicine training programs by an ``additional 400 residents per year,''
and the Accreditation Council on Graduate Medical Education (ACGME)
recommends increased funding for preventive medicine residency training
programs. Additionally, the Association of American Medical Colleges
released statements in 2011 that stressed the importance of
incorporating behavioral and social sciences in medical education as
well as announcing changes to the Medical College Admission Test that
would test applicants on their knowledge in these areas. Such measures
strongly indicate increasing recognition of the need to take a broader
view of health that goes beyond just clinical care--a view that is a
unique focus and strength of preventive medicine residency training.
In fact, preventive medicine is the only one of the 24 medical
specialties recognized by the American Board of Medical Specialties
that requires and provides training in both clinical medicine and
public health. Preventive medicine physicians possess critical
knowledge in population and community health issues; disease and injury
prevention; disease surveillance and outbreak investigation; and public
health research. They are well versed in leading collaborative efforts
to improve health that include stakeholder groups from all aspects of
an issue--including community, industry, healthcare provider, academic,
payer, and government organizations--in addressing both healthcare-
related and social and behavioral determinants of health. Such
diversity also illustrates the value preventive medicine physicians
offer to many different sectors, industries, and organizations.
According to the Health Resources and Services Administration
(HRSA) and health workforce experts, there are personnel shortages in
many public health occupations, including epidemiologists,
biostatisticians, and environmental health workers among others.
According to the 2012 Physician Specialty Data Book released by the
Association of American Medical Colleges, preventive medicine had one
of the biggest decrease (-25 percent) in the number of first-year ACGME
residents and fellows between 2005 and 2010. ACPM is deeply concerned
about the shortage of preventive medicine-trained physicians and the
ominous trend of even fewer training opportunities. This deficiency in
physicians trained to carry out core public health activities will lead
to major gaps in the expertise needed to deliver clinical prevention
and community public health. The impact on the health of those
populations served by HRSA may be profound.
Despite being recognized as an underdeveloped national resource and
in shortage for many years, physicians training in the specialty of
Preventive Medicine are the only medical residents whose graduate
medical education (GME) costs are not supported by Medicare, Medicaid
or other third party insurers. Training occurs outside hospital-based
settings and therefore is not financed by GME payments to hospitals.
Both training programs and residency graduates are rapidly declining at
a time of unprecedented national, State, and community need for
properly trained physicians in public health and disaster preparedness,
prevention-oriented practices, quality improvement, and patient safety.
Currently, residency programs scramble to patch together funding
packages for their residents. Limited stipend support has made it
difficult for programs to attract and retain high-quality applicants.
Support for faculty and tuition has been almost non-existent. Directors
of residency programs note that they receive many inquiries about and
applications for training in preventive medicine; however, training
slots often are not available for those highly qualified physicians who
are not directly sponsored by an outside agency or who do not have
specific interests in areas for which limited stipends are available
(such as research in cancer prevention).
HRSA--as authorized in Title VII of the Public Health Service Act--
is a critical funding source for several preventive medicine residency
programs, as it represents the largest Federal funding source for these
programs. HRSA funding ($3.8 million in fiscal year 2013) currently
supports only 49 preventive medicine residents across 9 residency
training programs. An increase of $5 million will allow HRSA to support
nearly 60 new preventive medicine residents.
Of note, the preventive medicine residency programs directly
support the mission of the HRSA health professions programs by
facilitating practice in underserved communities and promoting training
opportunities for underrepresented minorities:
--Thirty-five percent of HRSA-supported preventive medicine graduates
practice in medically underserved communities, a rate of almost
3.5 times the average for all health professionals. These
physicians are meeting a critical need in these underserved
communities.
--Nearly one-fifth of preventive medicine residents funded through
HRSA programs are under-represented minorities, which is almost
twice the average of minority representation among all health
professionals.
--Fourteen percent of all preventive medicine residents are under-
represented minorities, the largest proportion of any medical
specialty.
In addition to training under-represented minorities and generating
physicians who work in medically underserved areas, preventive medicine
residency programs equip our society with health professionals and
public health leaders who possess the tools and skills needed in the
fight against the chronic disease epidemic that is threatening the
future of our Nation's health and prosperity. Correcting the root
causes of this critical problem of chronic diseases will require a
multidisciplinary approach that addresses issues of access to
healthcare; social and environmental influences; and behavioral
choices. ACPM applauds the initiation of programs such as the Community
Transformation Grant that take this broad view of the determinants of
chronic disease. However, any efforts to strengthen the public health
infrastructure and transform our communities into places that encourage
healthy choices must include measures to strengthen the existing
training programs that help produce public health leaders.
Many of the leaders of our Nation's local and State health
departments are trained in preventive medicine. Their unique
combination of expertise in both medical knowledge and public health
makes them ideal choices to head the fight against chronic disease as
well as other threats to our Nation's health. Their contributions are
invaluable. Investing in the residency programs that provide physicians
with the training and skills to take on these leadership positions is
an essential part of keeping Americans healthy and productive. As such,
the American College of Preventive Medicine urges the Labor, Health and
Human Services, Education, and Related Agencies Appropriations
Subcommittee to reaffirm its support for training preventive medicine
physicians and other public health professionals by providing an
increase of $5 million in fiscal year 2014 for preventive medicine
residency training under the public health and preventive medicine line
item in Title VII of the Public Health Service Act.
______
Prepared Statement of the American Dental Education Association
The American Dental Education Association (ADEA), on behalf of all
66 U.S. dental schools, 700 dental residency training programs, nearly
600 allied dental programs, as well as more than 12,000 faculty who
educate and train the nearly 50,000 students and residents attending
these institutions, submits this statement for the record and for your
consideration as you begin to prioritize fiscal year 2014 appropriation
requests. ADEA urges you to preserve the funding and fundamental
structure of Federal programs that provide prevention of dental
disease, access to oral health care for underserved populations, and
access to careers in dentistry and oral health services. It is at these
academic dental institutions that future practitioners and researchers
gain their knowledge, where the majority of dental research is
conducted, and where significant dental care is provided. Services are
provided through campus and offsite dental clinics where students and
faculty provide patient care to the uninsured and underserved
populations. However, in order to continue to provide these services,
there must be adequate funding. Therefore, it is critical that funding
for oral health care, delivery of services, and research be preserved
in order to ensure the level of care that is necessary for all segments
of the population.
We are asking the committee to maintain adequate funding for the
dental programs in Title VII of the Public Health Service Act; the
National Institutes of Health (NIH) and the National Institute of
Dental and Craniofacial Research (NIDCR); the Dental Health Improvement
Act; Part F of the Ryan White HIV/AIDS Treatment and Modernization Act:
the Dental Reimbursement Program and the Community-Based Dental
Partnerships Program; and State-Based Oral Health Programs at the
Centers for Disease Control and Prevention (CDC). These programs
enhance and sustain State oral health departments, fund public health
programs proven to prevent oral disease, fund research to eradicate
dental disease, and fund programs to develop an adequate workforce of
dentists with advanced training to serve all segments of the population
including the underserved, the elderly, and those suffering from
chronic and life-threatening diseases.
$32 million for Primary Oral Healthcare Workforce Improvements (HHS)
The dental programs in Title VII, Section 748 of the Public Health
Service Act that provide training in general, pediatric, and public
health dentistry and dental hygiene are critical. Support for these
programs will help to ensure there will be an adequate oral health care
workforce to care for the American public. The funding supports pre-
doctoral oral health education and postdoctoral pediatric, general, and
public health dentistry training. The investment that Title VII makes
not only helps to educate dentists and dental hygienists, but also
expands access to care for underserved communities.
Additionally, Section 748 addresses the shortage of professors in
dental schools with the dental faculty loan repayment program and
faculty development courses for those who teach pediatric, general, or
public health dentistry or dental hygiene. There are currently almost
300 open faculty positions in dental schools. These two programs
provide schools with assistance in recruiting and retaining faculty.
ADEA is increasingly concerned that with projected restrained funding,
the oral health research community will not be able to grow and that
the pipeline of new researchers will be inadequate to the future need.
Title VII Diversity and Student Aid programs play a critical role
in helping to diversify the health profession's student body and
thereby the health care workforce. For the last several years, these
programs have not received adequate funding to sustain the progress
that is necessary to meet the challenges of an increasingly diverse
U.S. population. The ADEA is most concerned that the Administration did
not request any funds for the Health Careers Opportunity Program
(HCOP). This program provides a vital source of support for oral health
professionals serving underserved and disadvantaged patients by
providing a pipeline for such individuals to learn about careers in
health care generally and dentistry specifically that is not available
through other workforce programs.
$15 million for Part F of the Ryan White HIV/AIDS Treatment and
Modernization Act: Dental Reimbursement Program (DRP) and the
Community-Based Dental Partnerships Program
Patients with compromised immune systems are more prone to oral
infections like periodontal disease and tooth decay. By providing
reimbursement to dental schools and schools of dental hygiene, the
Dental Reimbursement Program (DRP) provides access to quality dental
care for people living with HIV/AIDS while simultaneously providing
educational and training opportunities to dental residents, dental
students, and dental hygiene students who deliver the care. DRP is a
cost-effective Federal/institutional partnership that provides partial
reimbursement to academic dental institutions for costs incurred in
providing dental care to people living with HIV/AIDS. This program is
only reimbursing dental schools for the unreimbursed costs at 36.5
percent of those costs, continuing the shift of the cost burden to the
schools. This path is not sustainable to provide the necessary care.
$450 million for the National Institute of Dental and Craniofacial
Research (NIDCR)
Discoveries stemming from dental research have reduced the burden
of oral diseases, led to better oral health for millions of Americans,
and uncovered important associations between oral and systemic health.
Dental researchers are poised to make breakthroughs that can result in
dramatic progress in medicine and health, such as repairing natural
form and function to faces destroyed by disease, accident, or war
injuries; diagnosing systemic disease from saliva instead of blood
samples; and deciphering the complex interactions and causes of oral
health disparities involving social, economic, cultural, environmental,
racial, ethnic, and biological factors. Dental research is the
underpinning of the profession of dentistry. With grants from NIDCR,
dental researchers in academic dental institutions have built a base of
scientific and clinical knowledge that has been used to enhance the
quality of the Nation's oral health and overall health.
Also, dental scientists are putting science to work for the benefit
of the health care system through translational research, comparative
effectiveness research, health information technology, health research
economics, and further research on health disparities.
$19 million for the Division of Oral Health at the Centers for Disease
Control and Prevention (CDC)
The CDC Division of Oral Health expands the coverage of effective
prevention programs. The program increases the basic capacity of State
oral health programs to accurately assess the needs of the State,
organize and evaluate prevention programs, develop coalitions, address
oral health in State health plans, and effectively allocate resources
to the programs. This strong public health response is needed to meet
the challenges of oral disease affecting children and vulnerable
populations.
The level in fiscal year 2013 and the request for fiscal year 2014
are below the level needed to adequately sustain an appropriately
staffed State dental program, provide a robust surveillance system to
monitor and report disease, and support State efforts with other
governmental, non-profit, and corporate partners. We look forward to
sharing information with the committee in the coming weeks about the
impact that the current path of funding will have on the overall health
and preparedness of the Nation's States and communities.
Thank you for your consideration of this request. ADEA looks
forward to working with you to ensure the continuation of congressional
support for these critical programs. Please feel free to use us as a
resource on any issue affecting dental education. Please contact Yvonne
Knight, J.D., Senior Vice President for Advocacy and Governmental
Relations at [email protected].
We look forward to working with you on the many issues of mutual
concern.
______
Prepared Statement of the American Dental Hygienists' Association
On behalf of the American Dental Hygienists' Association (ADHA),
thank you for the opportunity to submit testimony regarding
appropriations for fiscal year 2014. ADHA appreciates the
subcommittee's past support of programs that seek to improve the oral
health of Americans and to bolster the oral health workforce. Oral
health is a part of total health and authorized oral health care
programs require appropriations support in order to increase the
accessibility of oral health services, particularly for the
underserved. ADHA urges $32 million for Title VII Program Grants to
expand and educate the dental workforce; ADHA urges that the block on
funding for Section 340G-1 of the Public Health Service Act--a much-
needed dental workforce demonstration program--be lifted and that $10
million be appropriated; ADHA joins other oral health organizations in
support for continued funding of the Dental Reimbursement Program (DRP)
and the Community-Based Dental Partnerships Program established under
the Ryan White HIV/AIDS Treatment and Modernization Act ($14 million
for fiscal year 2014) as well as block grants offered by HRSA's
Maternal Child Health Bureau ($8 million for fiscal year 2014). ADHA
also supports full funding for community health centers, and urges HRSA
be directed to further bolster the delivery of oral health services at
community health centers, including through the use of new types of
dental providers. ADHA urges $5 million for the CDC Oral Health
Prevention and Education Campaign; ADHA urges funding sufficient so
that all States have a school-based sealant program; ADHA urges at
least $25 million for oral health programming at CDC; ADHA urges $20
million for Dental Health Improvement Grants. ADHA also urges funding
of $450 million for NIDCR.
ADHA is the largest national organization representing the
professional interests of more than 150,000 licensed dental hygienists
across the country. In order to become licensed as a dental hygienist,
an individual must graduate from an accredited dental hygiene education
program and successfully complete a national written and a State or
regional clinical examination. Dental hygienists are primary care
providers of oral health services and are licensed in each of the fifty
States. Hygienists are committed to improving the Nation's oral health,
a fundamental part of overall health and general well-being. In the
past decade, the link between oral health and total health has become
more apparent and the significant disparities in access to oral health
care services have been well documented. At this time, when 130,000
million Americans struggle to obtain the oral health care required to
remain healthy, Congress has a great opportunity to support oral health
prevention, infrastructure and workforce efforts that will make care
more accessible and cost-effective. ADHA urges funding of all
authorized oral health programs and describes some of the key oral
health programs below:
HRSA--Title VII Program Grants to Expand and Educate the Dental
Workforce--
Fund at a level of $32 million in fiscal year 2014
A number of existing grant programs offered under Title VII support
health professions education programs, students, and faculty. ADHA is
pleased dental hygienists are recognized as primary care providers of
oral health services and are included as eligible to apply for several
grants offered under the ``General, Pediatric, and Public Health
Dentistry'' grants. With millions more Americans eligible for dental
coverage in coming years, it is critical that the oral health workforce
is bolstered. Dental and dental hygiene education programs currently
struggle with significant shortages in faculty and there is a dearth of
providers pursuing careers in public health dentistry and pediatric
dentistry. Securing appropriations to expand the Title VII grant
offerings to additional dental hygienists and dentists will provide
much needed support to programs, faculty, and students in the future.
ADHA recommends funding at a level of $32 million for fiscal year 2014.
HRSA--Alternative Dental Health Care Provider Demonstration Project
Grants--
Fund at a level of $10 million in fiscal year 2014
Congress recognized the need to improve the oral health care
delivery system when it authorized the Alternative Dental Health Care
Provider Demonstration Grants, Section 340G-1 of the Public Health
Service Act. The Alternative Dental Health Care Providers Demonstration
Grants program is a Federal grant program that recognizes the need for
innovations to be made in oral health care delivery to bring quality
care to the underserved by pilot testing new models. Dental workforce
expansion is one of many areas that need to be addressed as we move
forward with efforts to increase access to oral health care services to
those who are currently not able to obtain the care needed to maintain
a healthy mouth and body. The authorizing statute makes clear that
pilots must ``increase access to dental care services in rural and
underserved communities'' and comply with State licensing requirements.
Such new providers are already authorized in Minnesota and are under
consideration in Connecticut, Vermont, Kansas, Maine, New Hampshire,
Washington State and several other States. The fiscal year 2013
appropriations bill currently funding the Department of Health and
Human Services includes language designed to block funding for this
important demonstration program. We seek your leadership in removing
this unjustified prohibition on funding for the Alternative Dental
Health Care Providers Demonstration Grants. ADHA, along with more than
60 other oral health care organizations, advocated for funding of this
important program. Without the appropriate supply, diversity and
distribution of the oral health workforce, the current oral health
access crisis will only be exacerbated. ADHA recommends funding at a
level of $10 million for fiscal year 2014 to support these vital
demonstration projects.
HRSA--Dental Health Improvement Grants--
Fund at a level of $20 million in fiscal year 2014
HRSA administered dental health improvement grants are an important
resource for States to have available to develop and carry out State
oral health plans and related programs. Past grantees have used funds
to better utilize the existing oral health workforce to achieve greater
access to care. Previously awarded grants have funded efforts to
increase diversity among oral health providers in Wisconsin, promote
better utilization of the existing workforce including the extended
care permit (ECP) dental hygienist in Kansas, and in Virginia implement
a legislatively directed pilot program to allow patients to directly
access dental hygiene services. ADHA supports funding of HRSA dental
health improvement grants at a level of $20 million for fiscal year
2014.
CDC--Oral Health Prevention and Education Campaign--
Fund at a level of $5 million in fiscal year 2014
A targeted national campaign led by the Centers for Disease Control
(CDC) to educate the public, particularly those who are underserved,
about the benefits of oral health prevention could vastly improve oral
health literacy in the country. While significant data has emerged over
the past decade drawing the link between oral health and systemic
diseases like diabetes, heart disease, and stroke, many remain unaware
that neglected oral health can have serious ramifications to their
overall health. Data is also emerging to highlight the role that poor
oral health in pregnant women has on their children, including a link
between periodontal disease and low-birth weight babies. ADHA is
pleased that the CDC has begun the development of an oral health
communication plan and ADHA advocates an allocation of $5 million in
fiscal year 2014 to further a national oral health prevention and
education campaign and to ensure that CDC's media center has the
resources needed to make oral health education material readily
available.
CDC--School-Based Sealant Programs--
Fund at a level sufficient to ensure school-based sealant programs in
all 50 States
Sealants have long-proven to be low-cost and effective in
preventing dental caries (cavities), particularly in children. Despite
this proven prevention capacity, dental caries remains the most common
childhood disease, five times more common than asthma, and more than
half of all children age 5-9 have a cavity or filling. The CDC noted
that data collected in evaluations of school-based sealant programs
indicates the programs are effective in stopping and preventing dental
decay. CDC data show that the 60 percent increase in the delivery of
school-based sealants in those States with CDC funding saved an
estimated $1 million in Medicaid dental expenditures. Significant
progress has been made in developing best practices for school-based
sealant programs, yet most States lack well developed programs as a
result of funding shortfalls. ADHA encourages the transfer of funding
from the Public Health and Prevention Fund sufficient to allow CDC to
meaningfully fund school-based sealant programs in all 50 States in
fiscal year 2014.
CMS--Oral Health Access--
Given the dearth of dentists, encourage CMS to continue its efforts to
improve access to pediatric oral health services provided by
non-dentists, including dental hygienists and mid-level dental
providers
ADHA commends the Center for Medicare and Medicaid Services (CMS)
for its work on the Department wide Oral Health Initiative and its
continuing efforts to improve access to pediatric oral health services.
These efforts are vital because, as the Center for Medicaid and CHIP
Services noted in an April 18, 2013 Informational Bulletin, fewer than
half of Medicaid-enrolled children nationally are receiving at least
one preventive oral health service in a year, and there remains a wide
variation across States. CMS noted in its fiscal year 2014 budget
justification that, in response to report language in the fiscal year
2013 appropriations bill, that it will issue a State Medicaid Director
letter in late 2013 providing a general clarification of CMS policy
allowing States to reimburse for services provided by dental hygienists
outside of a dental office without a prior exam or pre-authorization by
a dentist. This letter should also make clear that CMS does not require
dentist supervision of dental hygienists.
CDC--Oral Health Programming--
Fund at a level of $25 million in fiscal year 2014
ADHA joins with others in the dental community in urging $25
million for oral health programming within the Centers for Disease
Control. This funding level will enable CDC to continue its vital work
to control and prevent oral disease, including vital work in community
water fluoridation. Federal grants to facilitate improved oral health
leadership at the State level, support the collection and synthesis of
data regarding oral health coverage and access, promote the integrated
delivery of oral health and other medical services, enable States to
innovate new types of oral health programs and promote a data-driven
approach to oral health programming. ADHA advocates for $25 million in
funding for grants to improve and support oral health infrastructure
and surveillance.
NIH--National Institute of Dental and Craniofacial Research--
Fund at a level of $450 million in fiscal year 2014
The National Institute of Dental and Craniofacial Research (NIDCR)
cultivates oral health research that has led to a greater understanding
of oral diseases and their treatments and the link between oral health
and overall health. Research breeds innovation and efficiency, both of
which are vital to improving access to oral health care services and
improved oral status of Americans in the future. ADHA joins with others
in the oral health community to support NIDCR funding at a level of
$450 million in fiscal year 2014.
CONCLUSION
ADHA appreciates the difficult task Appropriators face in
prioritizing and funding the many meritorious programs and grants
offered by the Federal Government. In addition to the items listed,
ADHA joins other oral health organizations in support for continued
funding of the Dental Reimbursement Program (DRP) and the Community-
Based Dental Partnerships Program established under the Ryan White HIV/
AIDS Treatment and Modernization Act ($14 million for fiscal year 2014)
as well as block grants offered by HRSA's Maternal Child Health Bureau
($8 million for fiscal year 2014). ADHA also supports full funding for
community health centers, and urges HRSA be directed to further bolster
the delivery of oral health services at community health centers,
including through the use of new types of dental providers. ADHA
remains a committed partner in advocating for meaningful oral health
programming that makes efficient use of the existing oral health
workforce and delivers high quality, cost-effective care.
______
Prepared Statement of the American Diabetes Association
My name is John E. Anderson, M.D., President, Medicine and Science.
Thank you for the opportunity to submit testimony on behalf of the
American Diabetes Association (Association). As President of Medicine
and Science for the Association, I represent the nearly 105 million
American adults and children living with diabetes or prediabetes.
Diabetes is a disabling, deadly, and growing epidemic. According to the
CDC, one in three adults in our country--one in two among minority
populations--will have diabetes in 2050 if present trends continue.
This is an unacceptable future that our country cannot afford, but
it is avoidable. For fiscal year 2014, the Association urges the
subcommittee to make a substantial investment in research and
prevention efforts to find a cure, and improve the lives of those
living with, or at risk for, diabetes. We ask the subcommittee to
provide $2.216 billion for the National Institute of Diabetes and
Digestive and Kidney Diseases (NIDDK) at the National Institutes of
Health (NIH), $86.3 million for the Division of Diabetes Translation
(DDT) at Centers for Disease Control and Prevention (CDC), and $20
million in funding for the National Diabetes Prevention Program at CDC.
I care for patients with diabetes every day in my practice in
Nashville, Tennessee, and I can testify to the tremendous need for a
much deeper Federal investment in diabetes research and prevention
programs. Nearly 26 million Americans have diabetes, and another 79
million have prediabetes, a condition putting them at high risk for
developing diabetes. Every 17 seconds, someone in this country is
diagnosed with diabetes. Today, 230 Americans with diabetes will
undergo an amputation, 120 will enter end-stage kidney disease
programs, and 55 will go blind from diabetes. When I walked through the
Intensive Care Unit at my hospital, I was struck that half of the
patients there have diabetes. Diabetes robs us of our limbs, our sight
and our lives. It should not be ignored by anyone, including Congress
and the Administration. My patients, and individuals with, and at risk
for diabetes everywhere in this country deserve a different and
brighter future.
In addition to the horrendous physical toll, diabetes is
economically devastating to our country. A new report by the
Association found the annual cost of diagnosed diabetes has skyrocketed
by an astonishing 41 percent over the last 5 years--from $174 billion
per year in 2007 to $245 billion in 2012. Approximately one out of
every five health care dollars is spent caring for someone with
diagnosed diabetes, while one in ten health care dollars is directly
attributed to diabetes. An astonishing one of every three of Medicare
dollars is associated with treating diabetes and its complications.
As the Nation's leading non-profit health organization providing
diabetes research, information and advocacy, the American Diabetes
Association believes that the alarming state of our Nation's diabetes
epidemic justifies the critical need for increased Federal funding for
diabetes research and prevention programs. We acknowledge the
challenging economic climate and support fiscal responsibility, but our
country cannot afford the consequences of failing to adequately fight
this growing epidemic. Sequestration has only heightened our concern
about the future of key diabetes programs at NIDDK and DDT. If we hope
to leave our children a physically and fiscally healthy Nation, we
can't afford to turn our backs on promising research providing the keys
to preventing diabetes, better managing the disease, and bringing us
closer to a cure. The rising tide of diabetes in America is daunting,
but not insurmountable. The Association is pressing forward by
supporting research and expanding education and awareness efforts, but
we cannot do it alone. Congress must immediately and significantly step
up its response to this epidemic.
BACKGROUND
Diabetes is a chronic disease that impairs the body's ability to
utilize food. The hormone insulin, which is made in the pancreas, is
needed for the body to change food into energy. In people with
diabetes, either the pancreas does not create insulin, which is type 1
diabetes, or the body does not create enough insulin and/or cells are
resistant to insulin, which is type 2 diabetes. If left untreated,
diabetes results in too much glucose in the blood stream. Blood glucose
levels that are too high or too low (as a result of medication to treat
diabetes) can be life threatening in the short term. In the long term,
diabetes is the leading cause of kidney failure, new cases of adult-
onset blindness, and non-traumatic lower limb amputations--as well as a
leading cause of heart disease and stroke. Additionally, an estimated
18 percent of pregnancies are affected by gestational diabetes, a form
of glucose intolerance diagnosed during pregnancy placing both mother
and baby at risk. In those with prediabetes, blood glucose levels are
higher than normal and reducing their risk of developing diabetes it is
essential.
THE NATIONAL INSTITUTE OF DIABETES AND DIGESTIVE AND KIDNEY DISEASES AT
NIH
NIDDK leads the way in supporting research across the country that
moves us closer to a cure and better treatments for diabetes. Thanks to
research supported by the NIDDK, people with diabetes now manage their
disease with a variety of insulin formulations and regimens far
superior to those used in decades past. For example, the continuous
glucose monitor and insulin pumps many of my patients use allow them to
better manage their blood glucose levels--and better pave the way to
healthier futures.
Examples of NIDDK-funded breakthroughs include: new drug therapies
for type 2 diabetes; the advent of modern treatment regimens that have
reduced the risk of costly complications like heart disease, stroke,
amputation, blindness and kidney disease; and ongoing development of
the artificial pancreas, a closed looped system combining continuous
glucose monitoring with insulin delivery.
While progress has been great, now is not the time to retreat from
efforts that may bring new discoveries in the study of diabetes.
Without increased funding, NIDDK will slow or halt promising research
that would enable individuals with the disease to live healthier, more
productive lives. The percentage of promising research proposals NIDDK
was able to fund decreased last year and is expected to decrease again
this year without additional funding. This is an ominous sign for the
millions of American families affected by diabetes who continue to
await the day when there are vastly improved treatments for diabetes
and ultimately, a cure for the disease.
Overall fiscal year 2014 funding of $2.216 billion would allow the
NIDDK to support additional research to further improve prevention and
treatment, and close in on a cure. For example, additional funding will
support a new comparative effectiveness clinical trial testing
different medications for type 2 diabetes. Additionally, NIDDK will be
able to continue to support researchers studying how insulin-producing
beta cells develop and function, with an ultimate goal of creating
therapies for replacing damaged or destroyed beta cells in people with
diabetes. Funding will also support a clinical trial testing therapies
to prevent type 2 diabetes.
THE DIVISION OF DIABETES TRANSLATION (DDT) AT THE CDC
The prevalence of diabetes has increased dramatically in every
State. The Federal Government's role in coordinating efforts to prevent
diabetes and its serious complications has never been more essential.
With this in mind, the Association remains very concerned that DDT's
funding has not kept pace with the magnitude of the growing diabetes
epidemic. We urge the Federal investment in DDT programs be
substantially increased to a minimum of $86.3 million in fiscal year
2014.
Increased fiscal year 2014 funding is even more critical in light
of the combined chronic disease grant application for State diabetes,
heart disease, obesity, and school health programs, released by CDC in
February 2013. While we think coordination across chronic disease
programs at CDC is an important endeavor, Congress must ensure the
needs of people with, and at risk for, diabetes are adequately
addressed in this new funding process. Increased resources must be
provided for this effort and delivery of primary, secondary, and
tertiary diabetes prevention and performance measures must be a prime
focus of combined grant activities in every State.
The DDT works to eliminate the preventable burden of diabetes
through proven educational programs, best practice guidelines, and
applied research. It performs important work in primary prevention of
diabetes and in preventing its complications. Funding for the DDT must
focus on maintaining State-based Diabetes Prevention and Control
Programs (DPCPs), supporting the National Diabetes Education Program,
defining the diabetes burden through the use of public health
surveillance, and translating research findings into clinical and
public health practice. For example, the DPCPs, located in all 50
States, the District of Columbia, and all U.S. territories, work to
prevent diabetes, lower blood glucose and cholesterol levels, and
reduce diabetes-related emergency room visits and hospitalizations.
This work is designed to improve education and awareness of diabetes by
engaging health providers, health systems and community-based
organizations to ensure these outcomes are achieved. DDT funding also
supports translational research like the SEARCH for Diabetes in Youth
study, a joint NIDDK-DDT effort designed to determine the impact of
type 2 diabetes in youth to improve prevention efforts aimed at young
people.
With additional fiscal year 2014 funding, the DDT will be able to
expand the efforts of DPCPs to improve primary, secondary and tertiary
prevention efforts at the State and local levels. Investing in DDT will
also enable community-based organizations in urban and rural areas to
reduce risk factors for diabetes in populations bearing a
disproportionate burden of the disease through two valuable programs:
the National Program to Eliminate Diabetes-Related Disparities in
Vulnerable Populations and the Native Diabetes Wellness Program, which
delivers effective health promotion activities tailored to American
Indian/Native Alaskan communities. Increased funding for DDT will also
allow it to expand its translational research to improve public health
interventions, such as the Translating Research Into Action for
Diabetes (TRIAD) study, a national, multicenter research effort to
provide practical information on how to improve care of individuals
with diabetes in managed-care settings.
THE NATIONAL DIABETES PREVENTION PROGRAM (CDC)
The Association is alarmed that 79 million Americans have
prediabetes and are on the cusp of a type 2 diabetes diagnosis.
Thankfully, the National Diabetes Prevention Program supports a
national network of community-based sites where trained staff provides
those at high risk for diabetes with cost-effective, group-based
lifestyle intervention programs. We urge Congress to provide $20
million for the National Diabetes Prevention Program in fiscal year
2014 to continue its nationwide expansion. The program is a proven
means of combating a growing epidemic, and research has shown it can
reduce the risk of type 2 diabetes by 58 percent for individuals with
prediabetes--at a cost of only about $300 per participant. Currently,
there are over 200 CDC recognized programs and the largest program, run
by the Y-USA, has 420 sites across the country. The National Diabetes
Prevention Program began with a successful NIDDK study in a clinical
setting. Additional translational research was then done by NIDDK and
DDT, proving the program also works in the less-costly community
setting. This is exactly the program we should be bringing to scale if
we hope to conquer our country's diabetes epidemic.
CONCLUSION
The Association is counting on Congress to significantly expand its
investment at NIDDK and the DDT in fiscal year 2014, including the
National Diabetes Prevention Program. We must change our country's
future with regard to this devastating disease and hope, even in a
difficult fiscal environment, the explosive growth in the financial and
human tolls of diabetes will be reflected in your appropriations
decisions. Thank you for the opportunity to submit this testimony. The
Association looks forward to working with you to stop diabetes.
______
Prepared Statement of the American Heart Association
Although major progress has been made in the battle against
cardiovascular disease (CVD) and stroke, CVD remains our Nation's No. 1
and most costly killer of men and women, costing each year a projected
$313 billion in medical expenses and lost productivity. Stroke, alone,
is our No. 4 killer, costing an estimated $40 billion a year. Both
remain major causes of disability.
Today, an estimated 83 million U.S. adults suffer from CVD and a
recent study projects that by the year 2030, more than 40 percent of
U.S. adults will live with CVD at a cost exceeding $1 trillion
annually. However, CVD and stroke research, prevention and treatment
remain woefully underfunded and there is no steady stream of funding
for the National Institutes of Health to mount a long-term, aggressive
campaign against these terrible burdens on society.
The current Federal budget dilemma makes a bad situation worse. The
sequestration and funding the Government under a continuing resolution
endanger the health of tens of millions of CVD sufferers and threaten
to undermine our struggling economy and global competitiveness. It is
imperative that Congress provide stable and sustained funding for CVD
and stroke research, prevention and treatment programs. The Nation's
physical and fiscal health are at stake.
FUNDING RECOMMENDATIONS: INVESTING IN THE HEALTH OF OUR NATION
Promising research that could stem the increase of heart disease
and stroke risk factors remains unfunded. If Congress fails to
capitalize on 50 years of progress, we will pay more in lives lost and
health care costs. Our recommendations address the issues in a fiscally
responsible way.
Capitalize on Investment for the National Institutes of Health (NIH)
NIH research helps prevent and cure disease, creates economic
growth, fosters innovation, and preserves U.S. leadership in
pharmaceuticals and biotechnology, and has transformed patient care.
NIH is the primary funder of basic research--the starting point for all
medical progress and an essential function of the Federal Government
that the private sector cannot fill.
NIH produces major returns on investment by developing new
technologies that create good-paying jobs. In fiscal year 2012, NIH
created about 402,000 U.S. jobs and produced $57.8 billion in economic
activity. Each dollar NIH distributes in a grant returns $2.21 in goods
and services to the local community in just 1 year. Under
sequestration, the NIH budget will be cut by 5 percent or $1.6 billion,
reducing its budget to 2007 levels, with an expected loss of 2,300
planned grants. Since NIH invests in every State and in 90 percent of
congressional districts, 20,500 jobs will be lost and new economic
activity will decline by $3 billion. These cuts will compromise NIH's
role as the world leader in medical research, delay treatments and
cures as scientists are on the verge of breakthroughs, and dishearten
early career investigators who may not return to science.
American Heart Association Advocates.--We ask Congress to
appropriate $32 billion, same as our request last year, for NIH to
restore sequester cuts, improve health, spur our economy and
innovation, and promote heart and stroke research.
Enhance Funding for NIH Heart and Stroke Research: A Proven and Wise
Investment
Declining death rates from CVD and stroke are directly related to
NIH research, with scientists on the cusp of discoveries that could
lead to revolutionary treatments and even cures. In addition to saving
lives, NIH research is cost-effective. For example, the first NIH tPA
drug trial resulted in a 10-year net $6.47 billion drop in stroke
health care costs. Also, the Stroke Prevention in Atrial Fibrillation
Trial 1 produced a 10-year net savings of $1.27 billion.
Cardiovascular Disease Research: National Heart, Lung, and Blood
Institute (NHLBI)
Although heart disease death rates have sharply fallen, there is
still no cure for CVD and demand will only increase to find better ways
for people to live healthy and productive lives with CVD. Stable and
sustained NHLBI funding is essential to capitalize on investments that
have discovered a gene variant linked to aortic valve disease;
developed a new computer tomography scanner that provides better heart
images with far less radiation; used genetics to identify and treat
those at greatest risk of CVD; hastened drug development to reduce
cholesterol and blood pressure; and created tailored strategies to
treat, slow or prevent heart failure. Sustained funding will permit
aggressive implementation of priority initiatives in the CVD strategic
plan.
Stroke Research: National Institute of Neurological Disorders and
Stroke (NINDS)
An estimated 795,000 Americans will suffer a stroke this year, and
more than 129,000 will die. Many of the 7 million survivors face severe
physical and mental disabilities and emotional distress. In addition to
the physical and emotional toll, stroke will cost a projected $40
billion in medical expenses and lost productivity this year. And the
future looks bleak. One study projects stroke prevalence will increase
25 percent over the next 20 years, striking more than 10 million
individuals with direct medical costs rising 238 percent over the same
time.
Stable and sustained NINDS funding is required to advance the nine
top priorities in stroke prevention, treatment and recovery research.
They include: accelerating translation of preclinical animal models
into clinical studies; preventing vascular cognitive impairment;
expediting comparative effectiveness research trials; developing
imaging biomarkers; expanding and integrating stroke trial networks;
improving clot-busting treatments; achieving robust brain protection;
targeting early stroke recovery; and using neural interface devices.
American Heart Association Advocates.--We recommend that NHLBI be
funded at $3.2 billion and NINDS at $1.7 billion for fiscal year 2014.
Increase Funding for the Centers for Disease Control and Prevention
(CDC)
Prevention is one of the strongest tools in the fight against CVD
and stroke. In our summary of prevention cost-effectiveness and value,
we found, for example, comprehensive worksite health programs have
shown a $3.27 cut in medical costs for each dollar spent in the first
12-18 months. Yet, proven prevention strategies are not being
implemented due to scarce funds. In addition to conducting research and
evaluation and developing a surveillance system, the Division for Heart
Disease and Stroke Prevention manages Sodium Reduction Communities and
the Paul Coverdell National Acute Stroke Registry. Also, DHDSP, with
the Centers for Medicare and Medicaid Services, implements Million
HeartsTM to prevent 1 million heart attacks and strokes in 5
years.
The DHDSP also manages WISEWOMAN that serves uninsured and under-
insured, low-income women ages 40 to 64. It helps them avoid heart
disease and stroke by providing preventive health services, referrals
to local health care providers--as needed--and lifestyle counseling and
interventions tailored to risk factors to promote lasting behavior
change.
American Heart Association Advocates.--We join with the CDC
Coalition in asking for $7.8 billion for CDC's ``core programs.'' AHA
requests $75 million for the DHDSP and $37 million for WISEWOMAN. Also,
we advocate for $35 million of the Prevention and Public Health Fund be
allocated for Million HeartsTM to execute a national blood
pressure educational campaign targeted at the 37 million Americans with
uncontrolled blood pressure.
Restore Funding for Rural and Community Access to Emergency Devices
(AED) Program
About 90 percent of cardiac arrest victims die outside of a
hospital. Yet, prompt CPR and defibrillation with an automated external
defibrillator (AED) can more than double the chances of survival.
Communities with comprehensive AED programs have survival rates
approaching 40 percent, compared to the current less than 10 percent.
HRSA's Rural and Community AED Program provides competitive grants to
States to buy AEDs, strategically place them, and train lay rescuers
and first responders in their use. Due to this effort, almost 800
patients were saved between August 1, 2009 and July 31, 2010. But
limited resources allowed only 6 percent of applicants to be funded and
only 8 States received funds in fiscal year 2012.
American Heart Association Advocates.--We ask for a fiscal year
2014 appropriation of $8.927 million to restore this life-saving AED
program to fiscal year 2005 levels when 47 States were funded.
CONCLUSION
Cardiovascular disease and stroke continue to inflict a deadly,
disabling and costly toll on Americans. Our funding recommendations for
NIH, CDC and HRSA will save lives and cut rising health care costs. We
urge Congress to seriously consider our proposals that represent a wise
investment for our Nation and for the health and well-being of this and
future generations.
______
Prepared Statement of the American Indian Higher Education Consortium
This statement includes the fiscal year 2014 (fiscal year 2014)
recommendations of the Nation's Tribal Colleges and Universities
(TCUs), in two areas of the Department of Education: Office of
Postsecondary Education and Office of Vocational Education.
I. Higher Education Act Programs:
--Strengthening Developing Institutions.--Titles III and V of the
Higher Education Act support institutions that enroll large
proportions of financially disadvantaged students and have low
per-student expenditures. TCUs, funded under Title III-A Sec.
316, which are truly developing institutions, are providing
quality higher education opportunities to some of the most
rural, impoverished, and historically underserved areas of the
country. The goal of HEA-Titles III/V programs is ``to improve
the academic quality, institutional management and fiscal
stability of eligible institutions, in order to increase their
self-sufficiency and strengthen their capacity to make a
substantial contribution to the higher education resources of
the Nation.'' The TCU Title III-A program is specifically
designed to address the critical, unmet needs of their American
Indian students and communities, in order to effectively
prepare them to succeed in a global, competitive workforce.
Yet, in fiscal year 2011 this critical program was cut by over
11 percent and by another 4 percent in fiscal year 2012. The
TCUs urge the subcommittee to appropriate $30 million in fiscal
year 2014 for HEA Title III-A Section 316.
--TRIO.--Retention and support services are vital to achieving the
national goal of having the highest percentage of college
graduates globally by 2020. TRIO programs, such as Student
Support Services and Upward Bound were created out of
recognition that college access is not enough to ensure
advancement and that multiple factors work to prevent the
successful completion of higher education for many low-income
and first-generation students and students with disabilities.
Therefore, in addition to maintaining the maximum Pell Grant
award level, it is critical that Congress also sustains student
assistance programs such as Student Support Services and Upward
Bound so that low-income and minority students have the support
necessary to allow them to remain enrolled in and ultimately
complete their postsecondary courses of study.
Pell Grants.--The importance of Pell Grants to TCU students cannot
be overstated. A majority of TCU students receive Pell Grants,
primarily because student income levels are so low and they have far
less access to other sources of financial aid than students at State-
funded and other mainstream institutions. Within the TCU system, Pell
Grants are doing exactly what they were intended to do--they are
serving the needs of the lowest income students by helping them gain
access to quality higher education, an essential step toward becoming
active, productive members of the workforce. However, last summer the
Department of Education changed its regulations limiting Pell
eligibility from 18 to 12 full-time semesters, without consideration of
those already in the process of attaining a postsecondary degree. This
change in policy will impede many TCU students from completing a
postsecondary degree, which is widely recognized as being critical for
access to, and advancement in, today's highly technical workforce.
Recent placement tests administered at TCUs to first-time entering
students indicated that 64 percent required remedial math, 78 percent
needed remedial writing, and 60 percent required remedial reading.
These results clearly illustrate just how serious this new Pell Grant
eligibility limit is to the success of TCU students in completing a
postsecondary degree. Students requiring remediation can use as much as
a full year of eligibility enhancing their math, and or reading/writing
skills, thereby hampering their future postsecondary degree plans. A
prior national goal was to provide access to quality higher education
opportunities for all students regardless of economic means, at which
TCUs have been extremely successful. While the new national goal is
intending to produce graduates with postsecondary degrees by 2020, this
policy does not advance that objective. On the contrary, the new
regulations will cause many low-income students to once again abandon
their dream of a postsecondary degree, as they will simply not have the
means to pursue it. The goal of a well-trained technical workforce will
be greatly compromised. This new policy evokes the adage ``penny wise--
pound foolish.'' The TCUs urge the subcommittee to continue to fund
this essential program at the highest possible level, and to direct the
Secretary of Education to implement a process to waive the very
restrictive 12 semester Pell Grant eligibility for TCU students.
II. Perkins Career and Technical Education Programs:
--Tribally-Controlled Postsecondary Career and Technical
Institutions.--Section 117 of the Carl D. Perkins Career and
Technical Education Act provides a competitively awarded grant
opportunity for tribally chartered and controlled career and
technical institutions. AIHEC requests $8,200,000 to fund
grants under Sec. 117 of the Perkins Act.
--Native American Career and Technical Education Program (NACTEP).--
NACTEP (Sec. 116) reserves 1.25 percent of appropriated funding
to support American Indian career and technical programs. The
TCUs strongly urge the subcommittee to continue to support
NACTEP, which is vital to the continuation of career and
technical education programs offered at TCUs that provide job
training and certifications to remote reservation communities.
III. American Indian Adult and Basic Education (Office of
Vocational and Adult Education): This program supports adult basic
education programs for American Indians offered by State and local
education agencies, Indian tribes, agencies, and TCUs. Despite the
absence of funding, TCUs must find a way to continue to provide adult
basic education classes for those American Indians that the present K-
12 Indian education system has failed. Before many individuals can even
begin the course work needed to learn a productive skill, they first
must earn a GED or, in some cases, even learn to read. There is an
extensive need for adult basic educational programs, and TCUs must have
adequate and stable funding to provide these essential activities. TCUs
request that the subcommittee direct that $8 million of the funds
appropriated annually for the Adult Education State Grants be made
available to make competitive awards to TCUs to help meet the growing
demand for adult basic education and remediation program services on
their respective Reservations.
JUSTIFICATIONS FOR FISCAL YEAR 2014 APPROPRIATIONS REQUESTS FOR TCUS
Tribal colleges and our students are already being
disproportionately impacted by ongoing efforts to reduce the Federal
budget deficit and control Federal spending. The final fiscal year 2011
Continuing Resolution eliminated all of the Department of Housing and
Urban Development's Minority Serving Institutions (MSIs) community-
based programs, including a critical TCU-HUD facilities program. TCUs
were able to maximize leveraging potential, often securing even greater
non-Federal funding to construct and equip Head Start and early
childhood centers; student and community computer laboratories and
public libraries; and student and faculty housing in rural and remote
communities where few or none of these facilities existed. Important
STEM programs, operated by the National Science Foundation and NASA
were cut, and for the first time since the NSF program was established
in fiscal year 2001, no new TCU-STEM awards were made in fiscal year
2011. Additionally, TCUs and their students suffer the realities of
cuts to programs such as GEAR-UP, TRIO, SEOG, and as noted earlier, are
seriously impacted by the new highly restrictive Pell Grant eligibility
criteria more profoundly than mainstream institutions of higher
education, which can realize economies of scale due to large
endowments, alternative funding sources, including the ability to
charge higher tuition rates and enroll more financially stable
students, and access to affluent alumni. The loss of opportunity that
cuts to DoEd, HUD, and NSF programs represent to TCUs, and to other
MSIs, is magnified by cuts to workforce development programs within the
Department of Labor, nursing and allied health professions tuition
forgiveness and scholarship programs operated by the Department of
Health and Human Services, and an important TCU-based nutrition
education program planned by USDA. Combined, these cuts strike at the
most economically disadvantaged and health-challenged Americans.
We respectfully ask the members of the subcommittee for their
continued investment in the Nation's TCUs and full consideration of our
fiscal year 2014 appropriations needs and recommendations.
______
Prepared Statement of the American Lung Association
------------------------------------------------------------------------
Centers for Disease Control & National Institutes of Health
Prevention ------ Increase overall ------ Increase overall NIH
CDC funding--$7.8 billion funding--$32 billion
------------------------------------------------------------------------
Healthy Communities Program--$52.8 National Heart, Lung and Blood
million Institute--$3.214 billion
Office on Smoking and Health-- National Cancer Institute--$5.296
$212.36 million billion
Asthma programs--$28.435 million National Institute of Allergy and
Environment and Health Tracking Infectious Diseases--$4.689
Network--$35 million billion
Tuberculosis programs--$243 million National Institute of
Influenza Planning and Response-- Environmental Health Sciences--
$173.061 million $717.9 million
NIOSH--$292.588 million National Institute of Nursing
(discretionary) Research--$151.178 million
Prevention and Public Health Fund-- National Institute on Minority
Please Protect the Fund Health & Health Disparities--
$288.678 million
Fogarty International Center--
$72.864 million
------------------------------------------------------------------------
The American Lung Association is pleased to present our
recommendations for fiscal year 2014 (fiscal year 2014) to the Senate
Labor, Health and Human Services, and Education Appropriations
Subcommittee. The public health and research programs funded by this
committee will prevent lung disease and improve and extend the lives of
millions of Americans. Founded in 1904 to fight tuberculosis, the
American Lung Association is the oldest voluntary health organization
in the United States. The American Lung Association is the leading
organization working to save lives by improving lung health and
preventing lung disease through education, advocacy and research.
The Public Health Infrastructure Cannot Support Further Cuts
The American Lung Association acknowledges and thanks the Committee
for its commitment to maintaining investments in public health. The
Lung Association is very concerned about the impact of cuts in the last
5 years to public health agencies, especially those resulting from
sequestration.
The President's Budget for fiscal year 2014 proposes further cuts
to critical to the Nation's public health infrastructure. The
President's Budget contains another 3.7 percent in cut in budget
authority for the Centers for Disease Control and Prevention and an 8.4
percent cut in program level (including the Prevention Fund and other
categories) since fiscal year 2012. In the last four fiscal years, CDC
budget authority has fallen by 14.8 percent and program level by 9.3
percent--a truly frightening prospect when considering the future of
our Nation's public health agency.
Investments in prevention and wellness pay near- and long-term
dividends for the health of the American people. A recent study on the
California tobacco control program published in PLoS One showed this
amazing result: for every dollar the State spent on the program, it
saved $55 in healthcare costs. In order to save healthcare costs in the
long-term, investments must be made in proven public health
interventions including tobacco control, asthma programs and TB
infrastructure, particularly in light of recent sequestration cuts.
Lung Disease
Each year, close to 400,000 Americans die of lung disease. It is
America's number three killer, responsible for one in every six deaths.
More than 33 million Americans suffer from a chronic lung disease and
it costs the economy an estimated $106 billion each year. Lung diseases
include: lung cancer, asthma, chronic obstructive pulmonary disease
(COPD), tuberculosis, pneumonia, influenza, sleep disordered breathing,
pediatric lung disorders, occupational lung disease and sarcoidosis.
Improving Public Health and Maintaining Our Investment in Medical
Research
The American Lung Association strongly supports increasing overall
CDC funding to $7.8 billion in order for CDC to carry out its
prevention mission and to assure an adequate translation of new
research into effective State and local public health programs.
Congress must also maintain its commitment to medical research by
increasing overall NIH funding to $32 billion. While our focus is on
lung disease research, we support increasing the investment in research
across the entire NIH.
The Prevention and Public Health Fund
The American Lung Association has repeatedly stated its support for
the Public Health and Prevention Fund and our fierce opposition to any
attempts to divert or use these dollars for any purposes other than
what was originally intended in the Affordable Care Act--which in part
is to prevent and better manage devastating chronic diseases. The
Committee must oppose any attempts to divert or use the Fund for any
purposes other than what it was originally intended. The Prevention
Fund provides funding to critical public health initiatives, like
community programs that help people quit smoking, support groups for
lung cancer patients, and classes that teach people how to avoid asthma
attacks.
The Lung Association remains troubled that Prevention Fund dollars
are being used to supplant public health funds rather than supplement
them as originally intended. The intent of the Prevention Fund was to
fund additional public health programs and initiatives--leading to
additional health benefits--not to fund already existing ones. An
example of this is the President's proposal to fund the Environmental
and Health Tracking Network entirely with Prevention Fund dollars. This
program was previously funded by budget authority. As the Prevention
Fund dollars remain under threat and continue to be diverted for other
purposes, added budget authority at CDC is even more important.
One high profile example of successful use of Prevention Fund
dollars is CDC's Tips from Former Smokers campaign. The first phase of
the campaign, which began in March 2012, resulted in hundreds of
thousands of additional calls to 1-800-QUIT NOW and visits to
smokefree.gov by smokers seeking help in quitting. CDC began re-airing
the Tips ads in March 2013, and calls to 1-800-QUIT-NOW doubled in a
majority of States. In April, new and extremely powerful ads in the
Tips series began to air. The response from smokers seeking help to
quit is tangible evidence of the Fund having a positive impact.
Tobacco Use
The American Lung Association recognizes the ongoing support of the
Committee in investing in proven ways to reduce tobacco use. Tobacco
use is the leading preventable cause of death in the United States,
killing more than 443,000 people every year. Over 43 million adults and
1.9 million youth in the U.S. smoke. Annual health care and lost
productivity costs total $193 billion in the U.S. each year. Given the
magnitude of the tobacco-caused disease burden and how much of it can
be prevented, the CDC Office on Smoking and Health (OSH) should be much
larger and better funded. Historically, Congress has failed to invest
in tobacco control--even though public health interventions have been
scientifically proven to reduce tobacco use. This neglect cannot
continue if the Nation wants to prevent disease, promote wellness and
reduce healthcare costs. The American Lung Association requests $212.36
million be appropriated to OSH for fiscal year 2014.
Lung Cancer
The American Lung Association thanks the Committee's support for
and interest in the National Cancer Institute's Lung Cancer Screening
Trial and its findings. Given the magnitude of lung cancer and the
enormity of the death toll, the American Lung Association strongly
recommends that the NIH and other Federal research programs commit
additional resources to lung cancer. The National Lung Screening Trial
showed promising results for a small segment of the population at high
risk for developing lung cancer but more research must be done in order
to see if others would similarly benefit.
Over 370,000 Americans are living with lung cancer. During 2012,
more than 226,000 new cases of lung cancer were diagnosed--roughly 14
percent of all cancer diagnoses. It is the leading cause of cancer
deaths, with a five year survival rate of only 16.3 percent. In 2009,
there were 87,694 lung cancer deaths in men and 70,387 in women.
Although the number of deaths among men has plateaued, the number is
still rising among women. African Americans are more likely to develop
and die from lung cancer than persons of any other racial group. We
support a funding level of $5.296 billion for the NCI and strongly urge
more attention and focus on lung cancer.
Chronic Obstructive Pulmonary Disease (COPD)
COPD is the third leading cause of death in the U.S. It has been
estimated that 13.1 million patients have been diagnosed with some form
of COPD and as many as 24 million adults may suffer from its
consequences. In 2009, 133,965 people in the U.S. died of COPD. The
annual cost to the Nation for COPD in 2010 was projected to be $49.9
billion. We strongly support funding the NHLBI and its lifesaving lung
disease research program at $3.214 billion. The American Lung
Association also asks the Committee continue its support of the NHLBI
working with the CDC and other appropriate agencies address COPD,
including ongoing Federal efforts to better coordinate and implement
Federal activities regarding COPD.
Asthma
Asthma is highly prevalent and expensive. More than 25 million
Americans currently have asthma, of whom 7 million are children. Asthma
prevalence rates are over 37 percent higher among African Americans
than whites. Asthma is also the third leading cause of hospitalization
among children under the age of 15 and is a leading cause of school
absences from chronic disease. Asthma costs our healthcare system over
$50.1 billion annually and indirect costs from lost productivity add
another $5.9 billion, for a total of $56 billion dollars annually. But
teaching children and adults how to manage their asthma saves money. A
study that appeared in the American Journal of Respiratory Critical
Care found that for every dollar invested in asthma interventions,
there was a $35 benefit in healthcare cost savings and workdays lost.
The Lung Association was pleased to see that the President's fiscal
year 2014 budget request did not again propose to merge the CDC's
National Asthma Control Program with the Healthy Homes Program and
slash its funding. The Lung Association thanks this Committee for its
support of the National Asthma Control Program and asks for an
appropriation of $28.435 million ($25.3 million for programmatic and
$3.1 million for the working capital fund) in fiscal year 2014. In
addition, we recommend that the NHLBI receive $3.214 billion and the
NIAID receive $4.689 billion, and that both agencies continue their
research investments in cures and treatments for asthma.
Influenza
Public health experts warn that 209,000 Americans could die and
865,000 would be hospitalized if a moderate flu epidemic hits the U.S.,
which may be made worse because of sequestration. Current threats of
the latest strain of ``bird flu'' in China are a good example of our
needs in this area. According to the World Health Organization, the
H7N9 virus has sickened 108 people and killed 22. Public health
officials are tracking the victims closely to determine whether there
is evidence of human-to-human transmission, which would be the
precursor of a possible pandemic. This swift and thorough response
would not be possible without public health infrastructure in place and
ready to respond to threats. To prepare for a potential pandemic, the
American Lung Association supports funding CDC's influenza planning and
response efforts at $173.061 million.
Tuberculosis (TB)
There are an estimated 10-15 million Americans who carry latent TB
infection, and it is estimated that 10 percent of these individuals
will develop active TB disease. In 2011, there were 10,528 cases of
active TB reported in the U.S. While declining overall TB rates are
good news, the emergence and spread of multi-drug resistant TB and
totally-drug resistant TB also poses a significant public health
threat. We request that Congress increase funding for tuberculosis
programs at CDC to $243 million for fiscal year 2014.
Additional Priorities
We strongly encourage improved disease surveillance and health
tracking to better understand diseases like asthma. We support an
appropriations level of $35 million for the Environment and Health
Outcome Tracking Network from budget authority instead of Prevention
Fund dollars. We also strongly recommend at least $52.8 million in
funding for CDC's Healthy Communities Program. This program supports
investments in communities to identify and improve policies and
environmental factors influencing health and reduce the burden of
chronic diseases.
CONCLUSION
Lung disease is a continuing, growing problem in the United States.
It is America's number three killer, responsible for one in six deaths.
Progress against lung disease is not keeping pace with progress against
other major causes of death and more must be done. The level of support
this committee approves for lung disease programs should reflect the
urgency illustrated by the impact of lung disease.
______
Prepared Statement of the American National Red Cross
Chairman Tom Harkin, Ranking Member Jerry Moran, and members of the
subcommittee, the American Red Cross and the United Nations Foundation
appreciate the opportunity to submit testimony in support of measles
control activities of the U.S. Centers for Disease Control and
Prevention (CDC). The American Red Cross and the United Nations
Foundation recognize the leadership that Congress has shown in funding
CDC for these essential activities. We sincerely hope that Congress
will continue to support the CDC during this critical period in measles
control.
In 2001, CDC--along with the American Red Cross, the United Nations
Foundation, the World Health Organization, and UNICEF--founded the
Measles Initiative, a partnership committed to reducing measles deaths
globally. In 2012, the Initiative expanded to include rubella control
and adopted a new name, the Measles & Rubella Initiative (the
Initiative). The Initiative aims to reach elimination goals for
measles, rubella and congenital rubella syndrome. The current UN goal
is to reduce global measles deaths by 95 percent by 2015 compared to
2000 estimates, and three of six WHO regions have set rubella control
or elimination targets. The Initiative is committed to reaching these
goals by providing technical and financial support to governments and
communities worldwide.
The Measles & Rubella Initiative has achieved ``spectacular'' \1\
results by supporting the vaccination of more than 1.1 billion
children. Largely due to the Measles & Rubella Initiative, global
measles mortality dropped 71 percent, from an estimated 548,000 deaths
in 2000 to 158,000 in 2011 (the latest year for which data is
available). During this same period, measles deaths in Africa fell by
84 percent. About 430 children still die from measles each day from a
virus that can be countered with an effective, inexpensive vaccine; and
each year more than 110,000 children are born with congenital rubella
syndrome. In May 2012, the 194 member States of the World Health
Assembly resolved to endorse the Global Vaccine Action Plan, which
affirmed the elimination of measles and rubella by 2020 in at least
five of six WHO regions as global goals.
ESTIMATED NUMBER OF GLOBAL MEASLES DEATHS, 2000-2010
[In thousands]
------------------------------------------------------------------------
Number
------------------------------------------------------------------------
2000........................................................ 535.3
2001........................................................ 528.8
2002........................................................ 373.8
2003........................................................ 484.3
2004........................................................ 331.4
2005........................................................ 384.8
2006........................................................ 227.7
2007........................................................ 130.1
2008........................................................ 137.5
2009........................................................ 177.9
2010........................................................ 139.3
------------------------------------------------------------------------
Working closely with host governments, the Measles & Rubella
Initiative has been the main international supporter of mass measles
immunization campaigns since 2001. The Initiative mobilized more than
$1 billion and provided technical support in more than 80 developing
countries on vaccination campaigns, surveillance and improving routine
immunization services. From 2000 to 2011, an estimated 10 million
measles deaths were averted as a result of these accelerated measles
control activities at a donor cost of less than $200/death averted,
making measles mortality reduction one of the most cost-effective
public health interventions.
Nearly all the measles vaccination campaigns have been able to
reach more than 90 percent of their target populations. Countries
recognize the opportunity that measles vaccination campaigns provide in
accessing mothers and young children, and ``integrating'' the campaigns
with other life-saving health interventions has become the norm. In
addition to measles vaccine, vitamin A (crucial for preventing
blindness in under nourished children), de-worming medicine (reduces
malnutrition), and insecticide-treated bed nets (ITNs) for malaria
prevention are distributed during vaccination campaigns. The scale of
these distributions is immense. The Initiative and its partners have
supported the distribution of more than 245 million doses of vitamin A,
113 million doses of de-worming medicine, 41 million insecticide-
treated bed nets, and 137 million doses of polio vaccine. Doses of oral
polio vaccines are frequently distributed during measles campaigns in
polio endemic and high risk countries. The delivery of polio vaccines
in conjunction with measles vaccines in these campaigns strengthens the
reach of elimination and eradication efforts of these diseases. The
delivery of multiple child health interventions during a single
campaign is far less expensive than delivering the interventions
separately, and this strategy increases the potential positive impact
on children's health from a single campaign.
The extraordinary reduction in global measles deaths contributed
nearly 25 percent of the progress to date toward Millennium Development
Goal #4 (reducing under-five child mortality). However, large outbreaks
in several African, European and Asian countries in 2011 and 2012 have
put the 2015 measles elimination goals at risk. These outbreaks
highlight the fragility of the last decade's progress. If mass
immunization campaigns are not continued, measles deaths will increase
rapidly with more than half a million deaths estimated for 2013 alone.
To achieve the 2015 goal and avoid a resurgence of measles the
following actions are required:
--Fully implementing activities, both campaigns and strengthening
routine measles coverage, in India since it is the greatest
contributor to the global burden of measles.
--Sustaining the gains in reduced measles deaths, especially in
Africa, by strengthening immunization programs to ensure that
more than 90 percent of infants are vaccinated against measles
through routine health services before their first birthday as
well as conducting timely, high quality mass immunization
campaigns.
--Accelerating the introduction of a second dose of measles
containing vaccine into the routine immunization program of
eligible countries with support from the GAVI Alliance.
--Securing sufficient funding for measles and rubella-control
activities both globally and nationally. The Measles & Rubella
Initiative faces a funding shortfall of an estimated U.S. $171
million for 2013-2015. Implementation of timely measles
campaigns is increasingly dependent upon countries funding
these activities locally. The decrease in donor funds available
at a global level to support measles elimination activities
makes increased political commitment and country ownership of
the activities critical for achieving and sustaining the goal
of reducing measles mortality by 95 percent.
If these challenges are not addressed, the remarkable gains made
since 2000 will be lost and a major resurgence in measles deaths will
occur.
By controlling measles and rubella cases in other countries, U.S.
children are also being protected from the diseases. Measles can cause
severe complications and death. A resurgence of measles occurred in the
United States between 1989 and 1991, with more than 55,000 cases
reported. This resurgence was particularly severe, accounting for more
than 11,000 hospitalizations and 123 deaths. Since then, measles
control measures in the United States have been strengthened and
endemic transmission of measles cases have been eliminated here since
2000. However, importations of measles cases into this country continue
to occur each year, particularly from Europe. The costs of these cases
and outbreaks are substantial, both in terms of the costs to public
health departments and in terms of productivity losses among people
with measles and parents of sick children. Studies show that a single
case of measles in the United States can cost between $100,000 and
$200,000 to control. The U.S. had 222 measles cases in 2011, the
highest in 15 years and Canada experienced a large outbreak of over 800
cases.
The Role of CDC in Global Measles Mortality Reduction
Since fiscal year 2001 and until 2013, Congress has provided
between $43.6 and $49.3 million annually in funding to CDC for global
measles control activities. These funds were used toward the purchase
of measles vaccine for use in large-scale measles vaccination campaigns
in more than 80 countries in Africa and Asia, and for the provision of
technical support to Ministries of Health. Specifically, this technical
support includes:
--Planning, monitoring, and evaluating large-scale measles
vaccination campaigns;
--Conducting epidemiological investigations and laboratory
surveillance of measles outbreaks; and
--Conducting operations research to guide cost-effective and high
quality measles control programs.
In addition, CDC epidemiologists and public health specialists have
worked closely with WHO, UNICEF, the United Nations Foundation, and the
American Red Cross to strengthen measles control programs at global and
regional levels, and will continue to work with these and other
partners in implementing and strengthening rubella control programs.
While it is not possible to precisely quantify the impact of CDC's
financial and technical support to the Measles & Rubella Initiative,
there is no doubt that CDC's support--made possible by the funding
appropriated by Congress--was essential in helping achieve the sharp
reduction in measles deaths in just eleven years.
The American Red Cross and the United Nations Foundation would like
to acknowledge the leadership and work provided by CDC and recognize
that CDC brings much more to the table than just financial resources.
The Measles & Rubella Initiative is fortunate in having a partner that
provides critical personnel and technical support for vaccination
campaigns and in response to disease outbreaks. CDC personnel have
routinely demonstrated their ability to work well with other
organizations and provide solutions to complex problems that help
critical work get done faster and more efficiently.
In fiscal year 2011 and fiscal year 2012, Congress appropriated
approximately $49 million each year to fund CDC for global measles
control activities. This amount represents a $2.7 million decrease from
2010. The American Red Cross and the United Nations Foundation
respectfully request a return to fiscal year 2010 funding levels ($52
million) for fiscal year 2014 for CDC's measles and rubella control
activities to protect the investment of the last decade, and prevent a
global resurgence of measles and a loss of progress toward Millennium
Development Goal #4.
Your commitment has brought us unprecedented victories in reducing
measles mortality around the world. In addition, your continued support
for this initiative helps prevent children from suffering from this
preventable disease both abroad and in the United States.
Thank you for the opportunity to submit testimony.
---------------------------------------------------------------------------
\1\ Unpublished data from Measles & Rubella, Annual Report 2012,
page 11 (April 2013).
---------------------------------------------------------------------------
______
Prepared Statement of the American Nurses Association
The American Nurses Association (ANA) appreciates the opportunity
to comment on fiscal year 2014 appropriations for the Title VIII
Nursing Workforce Development Programs and Nurse-Managed Health
Clinics. Founded in 1896, ANA is the only full-service professional
association representing the interests of the Nation's 3.2 million
registered nurses (RNs) and advanced practice registered nurses (APRNs-
including certified nurse-midwives, nurse practitioners, clinical nurse
specialists, and certified registered nurse anesthetists) through its
State nurses associations, and organizational affiliates. The ANA
advances the nursing profession by fostering high standards of nursing
practice, promoting the rights of nurses in the workplace, and
projecting a positive and realistic view of nursing.
As the largest single group of clinical health care professionals
within the health system, licensed registered nurses are educated and
practice within a holistic framework that views the individual, family
and community as an interconnected system that can keep us well and
help us heal. As the Nation works towards restructuring the healthcare
system by focusing on expanding access, decreasing cost, and improving
quality; a significant investment must be made in strengthening the
nursing workforce.
We are grateful to the subcommittee for your past commitment to
Title VIII funding, and we understand the immense fiscal pressures the
subcommittee is facing. However, ANA respectfully requests your support
of $251 million for the Nursing Workforce Development programs
authorized under Title VIII of the Public Health Service Act in fiscal
year 2014. Additionally, we respectfully request $20 million for the
Nurse-Managed Health Clinics authorized under Title III of the Public
Health Service Act in fiscal year 2014. While we recognize the reality
of the sequester and the need to continue to cut the Federal deficit,
we also firmly believe this request is necessary given the demand for
nursing services is steadily on the rise.
DEMAND FOR NURSES CONTINUES TO GROW
A sufficient supply of nurses is critical in providing our Nation's
population with quality health care now and into the future. Registered
Nurses (RNs) and Advanced Practice Registered Nurses (APRNs) are the
backbone of hospitals, community clinics, school health programs, home
health and long-term care programs, and serve patients in many other
roles and settings. The Bureau of Labor Statistics' (BLS) Employment
Projections for 2010-2020 state the expected number of practicing
nurses will grow from 2.74 million in 2010 to 3.45 million in 2020, an
increase of 712,000 or 26 percent.
Contrary to the good news that there are a growing number of
nurses, the current nurse workforce is aging. According to the 2008
National Sample Survey of Registered Nurses, over one million of the
Nation's 2.6 million practicing RNs are over the age of 50. Within this
population, more than 275,000 nurses are over the age of 60. As the
economy continues to rebound, many of these nurses will seek
retirement, leaving behind a significant deficit in the number of
experienced nurses in the workforce. According to Douglas Staiger,
author of a New England Journal of Medicine study, the nursing shortage
will ``re-emerge'' from 2010 and 2015 as 118,000 nurses will stop
working full time as the economy grows.
Furthermore, as of January 1, 2011 Baby Boomers began turning 65 at
the rate of 10,000 a day. With this aging population, the healthcare
workforce will need to grow as there is an increase in demand for
nursing care in traditional acute care settings as well as the
expansion of non-hospital settings such as home care and long-term
care.
The BLS projections explain a need for 495,500 replacements in the
nursing workforce, bringing the total number of job openings for nurses
due to growth and replacements to 1.2 million by 2020. A shortage of
this magnitude would be twice as large as any shortage experienced by
this country since the 1960s. Cuts to Title VIII funding would be
detrimental to the health care system and the patients we serve.
TITLE VIII: NURSING WORKFORCE DEVELOPMENT PROGRAMS
The Nursing Workforce Development programs, authorized under Title
VIII of the Public Health Service Act (42 U.S.C. 296 et seq.), includes
programs such as Nursing Loan Repayment Program and Scholarships
Program, (Sec. 846, Title VIII, PHSA); Advanced Nursing Education (ANE)
Grants; (Sec. 811), Advanced Education Nursing Traineeships, (AENT);
Nurse Anesthetist Traineeships (NAT): Comprehensive Geriatric Education
Grants, (Sec. 855, Title VIII, PHSA); Nurse Faculty Loan Program, (Sec.
846 A, Title VIII, PHSA); and Nursing Workforce Diversity Grants, (Sec.
821). These programs support the supply and distribution of qualified
nurses to meet our Nation's healthcare needs.
Without support for Title VIII funding and nursing education; there
will be a shortage of nurse educators. With a shortage of nurse
educators, schools will have to turn away nursing students. With less
financial assistance to deserving nursing students; there will be fewer
nursing students. With fewer nursing students, there will be fewer
nurses. As noted above, the nursing shortage will have a detrimental
impact on the entire health care system.
Numerous studies have shown that nursing shortages contribute to
medical errors, poor patient outcomes, and increased mortality rates. A
study published in the March 17, 2011 issue of the New England Journal
of Medicine shows that inadequate staffing is tied to higher patient
mortality rates. The study supports findings of previous studies and
finds that higher than typical rates of patient admissions, discharges,
and transfers during a shift were associated with increased mortality--
an indication of the important time and attention needed by RNs to
ensure effective coordination of care for patients at critical
transition periods.
Over the last 48 years, Title VIII programs have provided the
largest source of Federal funding for nursing education; offering
financial support for nursing education programs, individual students,
and nurse educators. These programs bolster nursing education at all
levels, from entry-level preparation through graduate study and in many
areas including rural and medically underserved communities.
The American Association of Colleges of Nursing's (AACN) Title VIII
Student Recipient Survey gathers information about Title VIII dollars
and its impact on nursing students. The 2011-2012 survey, which
included responses from over 1,600 students, stated that Title VIII
programs played a critical role in funding their nursing education. The
survey showed that 68 percent of the students receiving Title VIII
funding are attending school full-time. Between fiscal year 2005 and
2010 alone, the Title VIII programs supported over 400,000 nurses and
nursing students as well as numerous academic nursing institutions, and
healthcare facilities.
However, current funding levels are falling short of the growing
need. In fiscal year 2008 (most recent year statistics are available),
the Health Resources and Services Administration (HRSA) was forced to
turn away 92.8 percent of the eligible applicants for the Nurse
Education Loan Repayment Program (NELRP), and 53 percent of the
eligible applicants for the Nursing Scholarship program due to a lack
of adequate funding. These programs are used to direct RNs into areas
with the greatest need--including community health centers, departments
of public health, and disproportionate share hospitals. Additionally
according to the AACN Title VIII Student Recipient Survey, a record
58,327 qualified applicants were turned away due to insufficient
clinical teaching sites, a lack of faculty, limited classroom space,
insufficient preceptors and budget cuts.
Monies you appropriate for these programs help move nurses into the
workforce without delay. Your investment in programs, and the nurses
that participate, is returned by more students entering into the
profession and serving in rural and underserved areas; by nurses
continuing with their education and studying to be nurse practitioners,
thereby addressing our Nation's growing need for primary care
providers; or by going on to become a nurse faculty member and teaching
the next generation of nurses.
While ANA appreciates the continued support of this subcommittee,
we are concerned that Title VIII funding levels have not been
sufficient to address the growing nursing shortage. Registered Nurses
(RNs) and Advanced Practice Nurses (APRNs) are key providers whose care
is linked directly to the availability, cost, and quality of healthcare
services. For these reasons and many more, we again respectfully
request you appropriate $251 million for the Nursing Workforce
Development programs authorized under Title VIII of the Public Health
Service Act in fiscal year 2014.
NURSE-MANAGED HEALTH CLINICS
A health care system must value primary care and prevention to
achieve an improved health status of individuals, families and the
community. Nurses are strong supporters of community and home-based
models of care. We believe that the foundation for a wellness-based
health care system is built in these settings and reduces the amount of
both financial expenditures and human suffering. ANA supports the
renewed focus on new and existing community-based programs such as
Nurse Managed Health Clinics (NMHCs).
Currently, there are more than 200 Nurse Managed Health Clinics
(NMHCs) in the United States which have provided care to over 2 million
patients annually. ANA believes that Nurse Managed Health Clinics
(NMHCs) are an efficient, cost-effective way to deliver primary health
care services. NMHCs are effective in disease prevention and early
detection, management of chronic conditions, treatment of acute
illnesses, health promotion, and more. These clinics are also used as
clinical sites for nursing education.
We respectfully request the committee provide $20 million for the
Nurse-Managed Health Clinics authorized under Title VIII of the Public
Health Service Act in fiscal year 2014.
Thank you for your time and your attention to this matter.
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Prepared Statement of the American Psychological Association
The American Psychological Association (APA) is the largest
scientific and professional organization representing psychology in the
U.S.: Membership includes more than 137,000 researchers, educators,
clinicians, consultants and students. Through its divisions in 54
subfields of psychology and affiliations with 60 State, territorial and
Canadian provincial associations, APA works to advance the creation,
communication and application of psychological knowledge to benefit
society and improve people's lives.
APA is very concerned that deficit reduction efforts to date--both
actual and those under consideration--have relied almost exclusively on
cuts to public health, health research, and other discretionary
programs. Public health and health research programs have experienced
three consecutive years of cuts. Under sequestration, these cuts will
be even deeper. We urge this Committee to consider the critical role of
the Public Health Service agencies in our Nation's security,
infrastructure and economic growth when making funding decisions.
As a member of the Centers for Disease Control and Prevention (CDC)
Coalition, APA supports at least $7.8 billion for CDC core programs in
fiscal year 2014. CDC programs play a key role in protecting Americans
from public health threats and emergencies, and in reducing healthcare
costs and strengthening the Nation's health system. In addition to the
significant overall funding cuts that the CDC has seen in recent years,
funding for the agency has increasingly relied heavily on the
Prevention and Public Health Fund and other fund transfers, so that the
agency has seen deep cuts to its budget authority. The Prevention and
Public Health Fund was intended to supplement and not supplant the base
funding of our public health agencies and programs. APA urges the
Committee to restore CDC's budget authority.
As a member of the Friends of the National Center for Health
Statistics (NCHS), APA recommends $181.5 million for the center in
fiscal year 2014, consistent with the President's request. The data
collected by NCHS on chronic disease prevalence, health care
disparities, emergency room use, teen pregnancy, infant mortality,
causes of death, and rates of insurance, to name a few, are essential
to the Nation's statistical and public health infrastructure. The
Committee's leadership in securing stable funding has helped NCHS
rebuild after years of underinvestment and stabilize the collection of
essential health data.
APA applauds the NCHS's progress including questions related to
sexual orientation in the National Health Interview Survey (NHIS), and
urges that other Federal surveys to follow suit. Still, there is slower
progress toward inclusion of gender identity questions. APA urges the
Committee to ensure that milestones established in the July, 2011
national data progression plan are met.
APA is pleased that the Committee has continued to designate
specific funding for the CDC's Prevention Research Centers (PRC)
program, and urges the Committee to restore funding for the program to
at least $28 million in fiscal year 2014, consistent with fiscal year
2011 funding levels. The PRC network of community, academic, and public
health partners makes significant research contributions that are
essential to the focus on prevention that is critically needed to
improve health in America.
APA asks the Committee to encourage the National Center on Injury
Prevention and Control to increase research on the psychological impact
of intimate partner and sexual violence in order to increase and
improve evidence based interventions to support the recovery of women
from the trauma of violence.
Finally, APA strongly supports the President's request for $10
million for gun violence prevention research and for $20 million for
expansion of the CDC's National Violent Death Reporting System. The
freeze on Federal funding for gun violence research has significantly
hampered psychological scientists' ability to systematically assess
risks and to determine the effectiveness of various preventive
measures. A new IOM committee on priorities for a public health
research agenda to reduce the threat of firearm-related violence
recently hosted a workshop where scientists from a range of fields,
including psychology, presented on very promising topics for future and
continued research, necessary for closing the gaps in knowledge about
this devastating problem that faces our Nation and for determining
effective solutions.
APA supports at least $32 billion for the National Institutes of
Health in fiscal year 2014. This represents the minimum investment
necessary to avoid further loss of promising research, and at the same
time allows the NIH's budget to keep pace with biomedical inflation.
NIH drives scientific innovation and develops new and better
diagnostics, improved prevention strategies, and more effective
treatments. NIH supports critical behavioral research on aging, memory,
learning, child development, behavior change and maintenance, and
prevention and treatment of many chronic and acute conditions. Just a
few highlights:
--NIMH-supported research has shown that biomedical approaches to HIV
prevention are most effective when they are combined with
behavioral approaches. Behavioral research is needed more than
ever to bolster medication adherence and treatment uptake, to
document real-world decision- making processes associated with
biomedical interventions, and to better understand potential
unintended and/or undesired consequences of biomedical
interventions.
--NICHD-supported research is examining the critical impact of stress
in altering a child's developmental trajectories. Investment in
additional longitudinal research is needed to understand the
long-term impact of stress on mental health outcomes,
cognitive, emotional and social development, including self-
control, inhibitory response, executive functioning, attention,
memory and learning skills and how those variables impact later
adolescent health behaviors, childhood obesity and academic
achievement.
--NIA-supported research is focusing on the feasibility of reversing
childhood disadvantage in later life.
--NIDDK-supported research is exploring ways in which basic
behavioral research can be applied to the problem of obesity.
--APA commends NIH for addressing the need for a more diverse
biomedical and behavioral research workforce and is encouraged
that NIH is examining the factors contributing to this
disparity in funding success, including the role of bias in the
peer review process, the process by which funding decisions are
made, and training/mentoring and support programs for under-
represented investigators across the pipeline and at critical
career decision points. APA encourages the Committee to
continue to press NIH to improve common data collected and
measured across the biomedical and behavioral workforce,
including those programs that track underrepresented students
and investigators. Such efforts will provide the much needed
information and direction regarding what programs and
initiatives are most successful at enhancing the diversity of
the scientific workforce.
Turning to the Center for Mental Health Services, APA is concerned
that while minorities represent 30 percent of the population and are
projected to increase to 40 percent by 2025, only 23 percent of recent
doctorates in psychology, social work and nursing were awarded to
minorities. We encourage the Committee to increase funding for the
Minority Fellowship Program by $4.4 million as requested in the
President's fiscal year 2014 budget proposal. The increase reflects the
need to continually grow the pool of culturally competent mental health
professionals.
APA strongly supports the work of SAMHSA's National Child Traumatic
Stress Network (NCTSN) program and recommends increased support for the
Network and its efforts on behalf of the recovery of children,
families, and communities affected by physical and sexual abuse, school
and community violence, natural disasters, sudden death of a loved one,
the impact of war on military families, and other sources of trauma.
Given that approximately 20-25 percent of older adults have a
mental or behavioral health problem, and older white males (age 85 and
over) currently have the highest rates of suicide of any group in the
U.S. APA supports an expanded effort to address the mental and
behavioral health needs of older adults including implementation of the
mental and behavioral health provisions in the Older Americans Act
Amendments of 2006, grants to States for the delivery of mental health
screening, and treatment services for older individuals and programs to
increase public awareness and reduce the stigma associated with mental
disorders in older individuals.
APA also recommends continued support of the HHS's Lifespan Respite
Program. Respite care can provide family caregivers with relief
necessary to maintain their own health, bolster family stability and
well-being, and avoid or delay more costly nursing home or foster care
placements.
In an effort to efficiently and effectively address the mental
health issues facing our Nation, APA strongly urges the Committee to
invest in programs already established and currently serving the
Nation's needs to increase access to mental and behavioral health
services and to increase the number of psychologists trained to provide
those documented and needed mental and behavioral health services to
those who need it throughout the country. APA urges Congress to fund
the Health Resources and Services Administration`s Graduate Psychology
Education program (GPE) at $4.5 million. This level represents a
restoration to previously funded level for fiscal year 2003-2005 and
would allow for 35-40 grants nationwide with over 900 eligible
universities and hospitals. According to the President's Budget for
fiscal year 2010-2011 in that year alone the GPE Program enabled the
addition of 620 doctoral level trainees to be trained through an
interdisciplinary approach to provide mental and behavioral health
services to approximately 46,000 underserved children, older adults,
chronically ill persons, and victims of abuse and trauma including
veterans and their families.
In addition, APA urges support of the programs funded under the
Garrett Lee Smith Memorial Act at least at current appropriated levels.
The suicide prevention programs authorized under the GLSMA and
administered by the Substance Abuse and Mental Health Services
Administration--State/Tribal, Campus, and the Technical Assistance
Center--provide critical services to our youth population. Mental
disorders account for nearly one-half of the disease burden for young
adults in the United States, according to the Journal of Adolescent
Health's January 2010 article, Mental Health Problems and Help-Seeking
Behavior among College Students. Further, suicide is the second-leading
cause of death for adolescents and young adults between the ages of 10
and 24 and results in 4,850 lives lost each year, according to the
Centers for Disease Control and Prevention. Any Federal efforts to
provide needed services to this population should be supported by
investing in the GLSMA programs.
APA appreciates the Committee's efforts to support these programs
which benefit all Americans.
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Prepared Statement of the American Public Health Association
The American Public Health Association is the collective voice
advocating for the public's health. As a diverse community of public
health professionals, we've championed the health of all people and
communities around the world for more than 140 years. We are pleased to
submit our views regarding the fiscal year 2014 budgets of the Centers
for Disease Control and Prevention and the Health Resources and
Services Administration. We urge you to take our recommendations into
consideration as you move forward with writing the fiscal year 2014
Labor-HHS-Education Appropriations bill.
CENTERS FOR DISEASE CONTROL AND PREVENTION
APHA believes that that Congress should support CDC as an agency--
not just the individual programs that it funds. Given the challenges
and burdens of chronic disease, the ongoing threat of an influenza
pandemic, constant public health emergencies, new and reemerging
infectious diseases and our many unmet public health needs and missed
prevention opportunities--we urge a funding level of $7.8 billion for
CDC's programs in fiscal year 2014. Unfortunately, the President's
fiscal year 2014 budget request for CDC represents a nearly $277
million reduction when compared with fiscal year 2012. These proposed
cuts come on top of the $577 million reduction to CDC in fiscal year
2013 due to the sequester and reduction in Prevention and Public Health
Fund resources. After these cuts, CDC's budget authority is now lower
than 2003 levels.
At the same time State and local health departments are operating
on tight budgets and with a smaller workforce. Since 2008, more than
46,000 State and local public health jobs have been lost. These cuts
are simply not sustainable and will reduce the ability of CDC and its
State and local grantees to investigate and respond to public health
emergencies as well as food borne and infectious disease outbreaks.
By translating research findings into effective intervention
efforts, CDC is a critical source of funding for many of our State and
local programs that aim to improve the health of communities. Perhaps
more importantly, Federal funding through CDC provides the foundation
for our State and local public health departments, supporting a trained
workforce, laboratory capacity and public health education
communications systems.
CDC also serves as the command center for our Nation's public
health defense system against emerging and reemerging infectious
diseases. With the potential onset of a worldwide influenza pandemic
and the many other natural and man-made threats that exist in the
modern world, CDC has become the Nation's--and the world's--expert
resource and response center, coordinating communications and action
and serving as the laboratory reference center. States and communities
rely on CDC for accurate information and direction in a crisis or
outbreak.
CDC serves as the lead agency for bioterrorism and other public
health emergency preparedness and response programs and must receive
sustained support for its preparedness programs in order for our Nation
to meet future challenges. Given the challenges of terrorism and
disaster preparedness, and our many unmet public health needs and
missed prevention opportunities we urge you to provide adequate funding
for State and local capacity grants. Unfortunately, this is not a
threat that is going away.
CDC plays a significant role in addressing chronic diseases such as
heart disease, stroke, cancer, diabetes and arthritis that continue to
be the leading causes of death and disability in the United States.
These diseases, many of which are preventable, are also among the most
costly to our health system. CDC's National Center for Chronic Disease
Prevention and Health Promotion provides critical funding for State
programs to prevent chronic disease, conducts surveillance to collect
data on disease prevalence and monitor intervention efforts and
translates scientific findings into public health practice in our
communities.
CDC's National Center for Environmental Health is essential to
protecting and ensuring the health and well being of the American
public by helping to control asthma, protecting from threats associated
with natural disasters and climate change and reducing exposure to lead
and other environmental hazards. We encourage the subcommittee to
provide adequate funding for NCEH programs which has been significantly
cut in recent years.
HEALTH RESOURCES AND SERVICES ADMINISTRATION
HRSA operates programs in every State and U.S. territory and is a
national leader in providing health services for individuals and
families. Roughly 55 million Americans are currently uninsured and more
than 60 million live in rural communities where primary health care
services are scarce--the agency serves as a health safety net for the
medically underserved and works to improve their health. To respond to
these challenges, APHA believes that the agency will require funding of
$7.0 billion for discretionary HRSA programs in fiscal year 2014.
The recommended funding level takes into account the need to reduce
the Nation's deficit while prioritizing the immediate and long-term
health needs of Americans. We are deeply concerned with the failure to
avert the sequester that will cut over $311 million from HRSA's fiscal
year 2013 discretionary funding. These cuts come on top of the 17
percent or more than $1.2 billion reduction to HRSA's budget authority
since fiscal year 2010. Unfortunately, the President's fiscal year 2014
budget request for HRSA proposes a more than $193 million reduction
when compared with fiscal year 2012. HRSA's ability to prevent
sickness, keep people healthy and treat illness or injury for millions
of Americans will be severely compromised, by across-the-board cuts if
the sequester is not reversed and the cuts restored. Our recommended
funding level is necessary to ensure HRSA is able to implement
essential public health programs, including training for public health
and health care professionals, providing primary care services through
health centers, improving access to care for rural communities,
supporting maternal and child health care programs and providing health
care to people living with HIV/AIDS. In addition to delivering much
needed services, the programs provide an important source of local
employment and economic growth in many low-income communities.
Our recommendation is based on the need to continue improving the
health of Americans by supporting critical HRSA programs, including:
--Health Professions programs support the education and training of
primary care physicians, nurses, dentists, optometrists,
physician assistants, mental and behavioral health
professionals and other allied health providers. With a focus
on primary care and training in interdisciplinary, community-
based settings, these are the only Federal programs focused on
filling the gaps in the supply of health professionals, as well
as improving the distribution and diversity of the workforce so
health professionals are well-equipped to care for the Nation's
growing, aging and increasingly diverse population.
--Primary Care programs support nearly 8,900 community health centers
and clinics in every State and U.S. territory, improving access
to care for more than 20 million patients in geographically
isolated and economically distressed communities. Close to half
of these health centers serve rural populations. In addition,
health centers target populations with special needs, including
migrant and seasonal farm workers, homeless individuals and
families and those living in public housing.
--Maternal and Child Health programs, including the Title V Maternal
and Child Health Block Grant, Healthy Start and others support
a myriad of initiatives designed to promote optimal health,
reduce disparities, combat infant mortality, prevent chronic
conditions and improve access to quality health care for more
than 40 million women and children, including children with
special health care needs.
--HIV/AIDS programs provide assistance to States and communities most
severely affected by HIV/AIDS. The programs deliver
comprehensive care, prescription drug assistance and support
services for more than half a million low-income people
impacted by HIV/AIDS, which accounts for roughly half of the
total population living with the disease in the U.S.
Additionally, the programs provide education and training for
health professionals treating people with HIV/AIDS and work
toward addressing the disproportionate impact of HIV/AIDS on
racial and ethnic minorities.
--Family Planning Title X services ensure access to a broad range of
reproductive, sexual and related preventive healthcare for over
5 million poor and low-income women, men and adolescents at
nearly 4,400 health centers nationwide. This program helps
improve maternal and child health outcomes and promotes healthy
families.
--Rural Health programs improve access to care for people living in
rural areas where there is a shortage of health care services.
These programs are designed to support community-based disease
prevention and health promotion projects, help rural hospitals
and clinics implement new technologies and strategies and build
health system capacity in rural and frontier areas.
PREVENTION AND PUBLIC HEALTH FUND
We are deeply disappointed with the diversion of more than $450
million from the Prevention and Public Health Fund in fiscal year 2013
to pay for implementing the health exchanges through the Affordable
Care Act. Between the reduction due to sequestration (-$51 million) and
the net diversion of resources for implementation of health exchanges
(-$332 million), programs currently supported by the fund are faced
with a more than 38 percent cut from fiscal year 2012. While the HHS
Secretary Sebelius was able to transfer some additional discretionary
funding to blunt some of the cuts to agencies such as CDC, we urge you
to oppose any future efforts to divert this funding and to instead
appropriate adequate funding for ACA implementation in fiscal year
2014. We are pleased that the President's fiscal year 2014 budget
proposal restores the use of the fund to its original intent. We urge
the Senate Appropriations Committee to work with the administration to
ensure this funding goes toward supporting State, local, tribal and
community-based activities in all 50 States for community prevention,
tobacco use prevention, obesity prevention and fitness, and clinical
prevention.
CONCLUSION
In closing, we emphasize that the public health system requires
stronger financial investments at every stage. This funding makes up
only a fraction of Federal spending and continued cuts to public health
and prevention programs will not balance our budget, it will only lead
to increased costs to our health care system. Successes in biomedical
research must be translated into tangible prevention opportunities,
screening programs, lifestyle and behavior changes and other
population-based interventions that are effective and available for
everyone. Without a robust and sustained investment in our public
health agencies, we will fail to meet the mounting health challenges
facing our Nation.
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Prepared Statement of the American Society for Microbiology
The American Society for Microbiology (ASM) is pleased to submit
the following statement on the fiscal year 2014 appropriation for the
Centers for Disease Control and Prevention (CDC). The ASM is the
largest single life science organization in the world with
approximately 37,000 members.
The CDC is the lead Federal agency to prevent disease, injury, and
disability and it must be adequately resourced for known and new public
health threats. CDC partners with State and local health departments
and global organizations and CDC medical personnel, scientists and
other public health professionals respond to public health events 24/7
wherever needed. CDC experts react quickly to events here and abroad,
ranging from foodborne illness outbreaks or previously unknown
infectious pathogens, to the health crises following earthquakes or
typhoons.
The ASM is very concerned that budgetary cuts are seriously eroding
CDC's capabilities in key areas like surveillance, laboratory
diagnosis, and control and prevention strategies. The budget
constraints now in effect will prove deleterious to our Nation's public
health system. Sequestration mandated cuts will certainly weaken or
even eliminate important CDC activities. CDC officials have already
announced probable decreases in grant award amounts and in numbers of
new awards. Sequestration is expected to cut CDC support to States by
more than $200 million, which will unquestionably affect responses to
disease outbreaks and other urgent public health problems.
Recent outbreak investigations point to the CDC's unique and
multifaceted capabilities that are at risk under budget shortages. Last
year, CDC personnel tracked the fungal meningitis linked to
contaminated steroid injections, with over 700 cases and almost 50
deaths across 20 States. CDC's epidemiologists and laboratories
investigated hantavirus infection among visitors to Yosemite National
Park, bacterial infections in pediatric oncology patients in Colorado,
the unprecedented outbreak of West Nile encephalitis in the Dallas/Fort
Worth area. CDC also supported international efforts against infectious
diseases, investigating cholera in Sierra Leone, anthrax in the
Republic of Georgia, Marburg hemorrhagic fever in Uganda, and other
outbreaks elsewhere. CDC funding is critical to building and
maintaining the expertise necessary to sustain CDC's rapid responses to
public health threats in the U.S. and worldwide.
As the Nation's public health agency, CDC continually faces
challenges like microbial agents of infectious disease and other
illnesses. One in six Americans gets sick each year from eating
contaminated food; more than 1,000 foodborne outbreaks are reported to
CDC officials annually. The CDC estimates that, each year in the United
States, there are nearly 20 million new sexually transmitted diseases
(STD) infections incurring lifetime medical costs of $15.6 billion.
Despite progress in treating HIV infection, significant challenges
remain (e.g., in 2010, an estimated 12,200 new infections in people in
the U.S. aged 13-24; in 2011, 2.5 million people newly infected
worldwide). Nearly 900,000 children in other countries still die each
year from vaccine preventable diseases like rotavirus, hepatitis B,
pneumococcal pneumonia, and meningitis. The U.S. has also witnessed a
recent upsurge in vaccine-preventable diseases, with over 42,000 cases
of pertussis (whooping cough) reported in 2012 alone and declared
epidemics in several States. Globalization has meant fewer barriers to
the spread of infectious diseases, making CDC's multi-talented programs
even more essential. Human migration contributes considerably to the
spread of disease: Each year, about 214 million people move across
national borders, three quarter billion within their own countries, and
nearly 3 billion travel by plane.
CDC Funding Provides Rapid Response, Surveillance
CDC has more than 15,000 employees and has personnel deployed to
over 50 countries, trained to protect through health promotion,
prevention of disease and disability, and preparedness. Such
widespread, diverse expertise gives CDC its agility to detect and
define an expansive array of threats and to respond quickly. The 2012-
2017 strategic plan of CDC's National Center for Emerging and Zoonotic
Infectious Diseases (NCEZID) underscores the complexities involved--one
overall strategy, intended to ``strengthen public health
fundamentals,'' directs CDC personnel to ``advance and increase
effectiveness of infectious disease laboratory science, surveillance,
epidemiology, information technology, communications, and strategic
partnerships.'' The CDC budget directly support extensive surveillance,
science based epidemiology, and other tools effective in combating
disease.
CDC investigations vary from behind the scenes lab support for
localized incidents to frontline responses in highly visible outbreaks.
An example is CDC's current collaboration with the World Health
Organization (WHO) to better understand a previously unknown
respiratory virus, related to the SARS virus that emerged in China in
2002 and rapidly infected 8,000 worldwide. The new coronavirus, thus
far called NCoV for novel coronavirus, causes severe lower respiratory
disease. As of March 7, there were only 14 confirmed cases reported to
WHO, with eight deaths, all among patients with ties to the Middle
East, and thus far no cases have been identified in the United States.
But CDC and other health organizations that have already faced fast
moving outbreaks like SARS are concerned by similar evidence of human-
to-human transmission and spread of the virus to other countries,
especially given the conflicts and volatility currently engulfing the
Middle East. CDC laboratories also are conducting tests on patient
specimens to isolate the new virus, as public health officials prepare
to engage yet another communicable disease.
CDC regularly applies its scientific expertise and laboratory
capabilities to investigate outbreaks both large and limited in scope,
including these recent examples:
--CDC investigated more than 300 cases of swine-origin variant
influenza virus that occurred last summer and fall across 9
midwestern and mid-Atlantic States. Most cases were in children
who attended or exhibited swine at agricultural fairs, and a
number of hospitalizations and one death occurred. This virus
has acquired genetic material from the 2009 pandemic H1N1
virus, raising concerns about its pandemic potential. CDC and
States have been working with 4-H clubs, USDA, and State
agriculture agencies to address this emerging public health
concern and reduce the risk for the upcoming fair season.
--CDC is collaborating with the U.S. Department of Agriculture's
Animal and Plant Health Inspection Service and State health
departments to follow an outbreak of human Salmonella
typhimurium infections linked to contact with pet hedgehogs.
The outbreak strain had been rare, with only one to two cases
reported via PulseNet (the national network for foodborne
disease surveillance) annually since 2002. Since 2011, an
increasing number of cases have been detected, with 14 in 2011,
18 in 2012, and two thus far in 2013.
--In August, CDC investigators and the FDA linked a multi-State
outbreak of salmonellosis to contaminated cantaloupes from an
individual farm, using pulsed field gel electrophoresis
analysis of patient samples. There are over 2,700 serotypes of
foodborne Salmonella bacteria, and advanced diagnostic tests
used by CDC are essential in accurately pinpointing sources.
--In January, CDC summarized its foodborne surveillance for 2009-
2010: 1,527 foodborne disease outbreaks reported, involving
29,444 cases of illness. Among the 790 events with a single
confirmed pathogen, 42 percent were caused by norovirus, 30
percent by Salmonella.
CDC must also address the alarming rise of drug resistant
pathogens, including Carbapenem Resistant Enterobacteriaceae (CRE).
Multiple CDC networks, with input from State health departments, have
detected increased cases over the past decade, warning of a potential
``nightmare'' scenario. CDC officials just released strongly worded
reports on the pathogen's ``triple threat'': (1) resistant to all, or
nearly all, available antibiotics; (2) causes a high mortality rate
(40-50 percent); and (3) can transfer antibiotic resistance to certain
other bacteria, even those normally benign. This is yet another example
of the continuing threat of health care associated infections (HAIs).
Surveillance networks hosted by CDC collect data on a long list of
diseases, using powerful computing and two way communication with
thousands of public health partners. These help guide CDC strategy,
providing another weapon against both emerging threats, like
chikungunya virus or multidrug resistant tuberculosis, and longtime
problems like foodborne illnesses. Last year, for instance, CDC
surveillance identified a resurgence of WNV infections: By mid-
December, there had been nearly 5,390 U.S. cases reported from 48
States, the highest number since 2003. Since 1999, when WNV was first
identified in the United States, CDC has tabulated more than 30,000
cases. With transfusion associated cases first reported in 2002, CDC
and its partners implemented WNV screening of the U.S. blood supply in
2003, preventing an estimated 3,000 to 9,000 transfusion related
infections.
CDC Funding Protects, Promotes Public Health
Using surveillance data, public education, and tools like vaccines,
CDC strives to prevent illness and injury, being proactive well beyond
reacting to disease outbreaks. To illustrate, although CRE is still
limited in the United States, it is typically acquired within
healthcare settings. This has prompted CDC to develop a CRE action
plan, part of its ongoing education campaigns to both minimize drug
resistance among pathogens and prevent costly healthcare associated
infections (HAIs). In its latest progress report (February 2013), CDC
listed successes against some types of HAIs using stringent infection
control measures; for example, a 41 percent reduction in central line
associated bloodstream infections since 2008. These CDC efforts embody
the obvious: that prevention quite literally is more cost effective
than finding a cure.
There are few public health measures as historically effective as
immunization against communicable diseases. Both in the United States
and elsewhere, CDC has been a major contributor, of personnel,
vaccines, expert support systems, to national and global immunization
campaigns like those against smallpox and polio. As of 2010, 85 percent
of children aged 12-23 months were immunized against measles worldwide.
Over the previous decade, measles deaths had been cut by 74 percent. In
this country, CDC vigorously promotes vaccination against childhood
infectious diseases, influenza, hepatitis, and more. It also evaluates
new candidate vaccines through collaborations with medical schools and
other Federal agencies. Yet last year's outbreak of whooping cough, a
vaccine preventable disease, is a reminder that U.S. vaccination
coverage is incomplete and that CDC education efforts must continue.
The ASM strongly urges that Congress increase the CDC budget in
fiscal year 2013 and fiscal year 2014 and fund the CDC at the highest
possible level.
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Prepared Statement of the American Society for Microbiology
The American Society for Microbiology (ASM) is pleased to submit
the following statement on the fiscal year 2014 appropriation for the
National Institutes of Health (NIH). The ASM is the largest single life
science organization in the world with more than 37,000 members.
The NIH supports research programs essential to public health and
to stimulating valuable economic sectors in health care and biomedical
sciences, and creating our future scientific workforce. The current
fiscal impasse is alarming to the biomedical research community. NIH
appropriations already had fallen short in recent years, with the
Agency losing one-fifth of its purchasing power over the past decade.
The budget sequestration now in effect would further cut NIH funding by
over 5 percent in the current fiscal year, which actually would equal
nearly 9 percent over the remaining fiscal year 2013 period.
The ASM is very concerned by the probable fallout from this
additional approximately $1.6 billion decrease in NIH's fiscal year
2013 funding, particularly when biomedical research should receive
more, not less, Federal support. NIH recently informed the scientific
community that all grant awards currently being funded likely would
receive less than their full fiscal year 2013 commitment levels. Under
sequestration, the Agency also will distribute fewer new awards. The
most recent success rate of grant applications was already at a low 18
percent compared with 30 percent in 2003. In February, analysis by
United for Medical Research (UMR) projected that sequestration of NIH
funding could force the loss of 20,500 U.S. jobs and $3 billion in
economic output. Sequestration decreases foreshadow the already grim
scenario of an estimated $900 billion in NIH spending cuts over the
next 10 years mandated under the Budget Control Act.
NIH funding jeopardizes the Nation's competitive edge in
biomedicine and thus our economic success in the innovation dependent
global marketplace. Budget cuts also will have a chilling effect on
whether young Americans choose research careers, if those careers
appear to lack professional and financial stability. It is generally
agreed that the United States must attract and inspire, not discourage,
the next generation of scientists. We urge Congress to also recognize
that inadequate NIH funding would fail a national public health system
faced with rising healthcare costs, as well as an aging and
increasingly diverse population. In 2011, national health spending
reached an estimated $2.7 trillion (17.9 percent of the GDP), a
startling argument for those effective disease treatment and prevention
approaches discovered through NIH funding.
The ASM strongly urges Congress to add additional funding for the
NIH in fiscal year 2013 and fiscal year 2014 and fund the NIH at the
highest possible level of funding.
NIH Funding of Biomedical Research is Essential to the Fight against
Infectious Diseases
Biomedical advances extend life expectancy and steadily improve our
quality of life. Examples include HIV/AIDS studies transforming a fatal
disease into a chronic condition through treatment, and the vaccine
development responsible for dramatic global declines in diphtheria,
polio, yellow fever, tetanus, and smallpox. Each year, three NIAID
supported vaccines are now saving numerous children worldwide:
pneumococcal vaccine, 826,000; Haemophilus influenzae type b vaccine,
386,000; and rotavirus vaccine, 435,000.
Despite lower mortality from communicable causes, infectious
diseases persist as significant threats to public health. Detecting,
preventing, and treating infectious diseases is a critical part of
NIH's portfolio. In allocating resources, it is important to remember
that NIH is the Nation's primary Federal supporter of basic, clinical,
and translational research in medicine, generating diagnostics,
therapeutics, prevention strategies, and surveillance tools that help
lift the burden of infectious disease.
Health agencies in the United States periodically confront
infectious diseases variously classified as newly emerging, reemerging/
resurging, or deliberately emerging (bioterrorism), as well as
pathogens increasingly resistant to drug therapy. In recent years,
these so called emerging infectious diseases (EID) have included those
caused by hantavirus, HIV, and highly virulent strains of E. coli and
influenza viruses; rising numbers of dengue, listeriosis, and West
Nile; and drug resistant forms of Staphylococcus aureus. In 2012 alone,
emerging examples included a novel disease causing coronavirus
initially reported in the Middle East and a variant influenza virus
(H3N2v) that spread from swine to people in U.S. farm communities. The
media report this month (March) of a man infected with a deadly form of
the tuberculosis pathogen, one considered to be ``extensively drug-
resistant'' (XDR TB), is just the most recent reminder that we cannot
afford to fall behind in our understanding of, and science based
responses to, microbial pathogens and their host interactions. U.S.
health officials found his TB strain to be resistant to at least eight
of the available standard drugs. Before being stopped at the U.S.-
Mexico border and placed in medical isolation, he had traveled through
13 countries over 3 months. XDR poses a major threat due to its
frightening drug resistance.
Scientists funded by the NIAID consistently achieve advances
against HIV/AIDS, malaria, tuberculosis, influenza, and other diseases
significant to our health and economy. To illustrate their importance,
NIAID supported these examples from the past year:
--Genetic changes in the salivary glands of mosquitoes infected with
dengue virus might increase virus transmission, elucidating
viral biology that must be understood to develop
countermeasures. There currently is no vaccine or drug
treatment for dengue, which globally infects about 50 million
to 100 million each year and has been reported in parts of the
United States.
--Discovery of a toxin transport system in S. aureus suggests a new
approach to drugs against a pathogen notorious for its ability
to resist traditional antibiotics. Methicillin resistant staph
(MRSA) is a leading cause of U.S. hospital acquired infections,
causing an estimated 18,000 deaths in 2005. In other research,
genome sequencing of multiple strains of vancomycin resistant
S. aureus gives scientific insight into pathogens resistant to
an antibiotic of last resort.
--Universal flu vaccines against a wide range of virus strains are
moving closer to reality with results from studies like those
of human immune cells producing broadly neutralizing antibodies
against flu viruses and those showing that a prime boost
vaccine regimen can elicit ``universal'' antibody production.
Several clinical trials of first generation universal vaccines
are either under way or planned at NIAID's Vaccine Research
Center.
--Clinical trials demonstrated the most effective antiretroviral drug
regimens to prevent HIV infection (pre-exposure prophylaxis, or
PrEP); other research helped shape antiretroviral treatment for
HIV infected individuals. Last August, NIAID awarded $7.8
million in first year funding to universities and medical
centers for basic research to identify new approaches in HIV
vaccine design, part of a much larger HIV vaccine discovery
effort.
The NIGMS has funded basic research on the structure and function
of HIV, in search of new treatments, for more than 25 years. It is a
partner with the National Science Foundation, the U.S. Department of
Agriculture and others in the Ecology and Evolution of Infectious
Diseases (EEID) program, contributing expertise in basic research. Last
year, NIGMS supported scientists developed a new improved CH-activation
technique to add molecules to existing compounds, making it easier to
tailor make new drugs; others reported on how iron uptake plays a role
in bacterial invasion of host tissues.
We invest in NIH each year to expand our vital scientific
knowledge, but also to create real world products that protect our
communities. In February, for example, researchers launched early-stage
clinical trials of two candidate vaccines against Shigella infection,
which each year causes about 90 million cases of severe diarrheal
illness and 108,000 deaths worldwide. Others are working toward broad
spectrum antivirals effective against groups of pathogens, like that
being developed against all enveloped viruses, including the Nipah,
Ebola, HIV, influenza, and Rift Valley fever viruses. NIH also is
supporting development of new technologies like nanoscience techniques
to detect pathogens hidden deep in human tissue and genome sequencing
to better track infectious disease outbreaks.
NIH Funding Stimulates Economic Sector, Workforce Expansion
Biomedicine is big business--the U.S. medical innovation sector
employs 1 million U.S. citizens, generates $84 billion in wages and
salaries, and exports $90 billion in goods and services. Yet U.S.
industry performs only 17 percent of basic research, leaving most of
the biomedical ``foundation building'' to Federal responsibility. NIH
is the largest funder of biomedical research in the world, including
the research of 138 Nobel Prize winners. It contributes more than 80
percent of Federal biomedical research funding in the United States.
The NIH extramural program supports about 50,000 competitive research
grants and 300,000 scientists and research personnel at more than 2,500
medical schools, universities, and other institutions throughout the
country. Annual appropriations also support nearly 6,000 scientists
working at the 27 NIH institutes and centers. The UMR analysis released
in February reinforced the agency's importance as an economic motive
force. In 2012 alone, the NIH financed more than 402,000 jobs and $57.8
billion in economic output nationwide.
Investment in NIH clearly reaps rewards well beyond improved public
health. Since 2000, for example, NIGMS supported research has received
18 Nobel Prizes either in Chemistry or in Physiology or Medicine. In
December, NIH proposed multiple initiatives to help strengthen both the
U.S. biomedical research enterprise and the Nation's global
competitiveness, designed ''to support a research ecosystem that
leverages the flood of biomedical data, strengthens the research
workforce through diversity, and attracts the next generation of
researchers.'' To be successful, initiative strategies like enhanced
training of graduate students and better management of ``big data''
through high performance computing will require sufficient funding
increases.
NIH support for university research has long been a major factor in
scientific and technological innovation in medicine. Unfortunately, the
current fiscal scenario will force reductions in existing grants and
likely fewer new awards going forward. Scientists at U.S. universities
are already reporting sequestration related setbacks to their planned
research, casting doubt on both potential breakthroughs and student
training programs. Stakeholders in biomedical research are concerned
that among the research jobs at risk, younger scientists will be
particularly affected. Undermining a future workforce generation is
shortsighted, and the ASM fears subsequent negative impacts on new R&D
discoveries, public health, and U.S. global competitiveness.
The ASM urgently requests the Congress increase funding for the NIH
and biomedical research.
______
Prepared Statement of the American Society for Nutrition
Dear Chairman Harkin and Ranking Member Moran: The American Society
for Nutrition (ASN) respectfully requests $32 billion for the National
Institutes of Health (NIH) and $162 million for the Centers for Disease
Control and Prevention/National Center for Health Statistics (CDC/NCHS)
in fiscal year 2014. ASN is dedicated to bringing together the world's
top researchers to advance our knowledge and application of nutrition.
ASN has nearly 5,000 members working throughout academia, clinical
practice, Government, and industry, who conduct research to help all
Americans live healthier, more productive lives.
NATIONAL INSTITUTES OF HEALTH
The National Institutes of Health (NIH) is the Nation's premier
sponsor of biomedical research and is the agency responsible for
conducting and supporting 86 percent (approximately $1.4 billion) of
federally-funded basic and clinical nutrition research. Nutrition
research, which makes up about 4 percent of the NIH budget, is truly a
trans-NIH endeavor, being conducted and funded across multiple
Institutes and Centers. Some of the most promising nutrition-related
research discoveries have been made possible by NIH support. In order
to fulfill the full potential of biomedical research, including
nutrition research, ASN recommends an fiscal year 2014 funding level of
$32 billion for the NIH, a modest increase over the current funding
level of $30.64 billion.
The modest increase we recommend is necessary to maintain both the
existing and future scientific infrastructure. The discovery process--
while it produces tremendous value--often takes a lengthy and
unpredictable path. Economic stagnation is disruptive to training,
careers, long range projects and ultimately to progress. NIH needs
sustainable and predictable budget growth to achieve the full promise
of medical research and to improve the health of all Americans. It is
imperative that we continue our commitment to biomedical research and
continue our Nation's dominance in this area by making the NIH a
national priority.
Over the past 50 years, NIH and its grantees have played a major
role in the growth of knowledge that has transformed our understanding
of human health, and how to prevent and treat human disease. Because of
the unprecedented number of breakthroughs and discoveries made possible
by NIH funding, scientists are helping Americans to live healthier and
more productive lives. Many of these discoveries are nutrition-related
and have impacted the way clinicians prevent and treat heart disease,
cancer, diabetes and other chronic diseases. By 2030, the number of
Americans age 65 and older is expected to grow to 72 million, and the
incidence of chronic disease will also grow. Sustained support for
basic and clinical research is required if we are to successfully
confront the health care challenges associated with an older, and
potentially sicker, population.
CDC NATIONAL CENTER FOR HEALTH STATISTICS
The National Center for Health Statistics (NCHS), housed within the
Centers for Disease Control and Prevention, is the Nation's principal
health statistics agency. The NCHS provides critical data on all
aspects of our health care system, and it is responsible for monitoring
the Nation's health and nutrition status through surveys such as the
National Health and Nutrition Examination Survey (NHANES), that serve
as a gold standard for data collection around the world. Nutrition and
health data, largely collected through NHANES, are essential for
tracking the nutrition, health and well-being of the American
population, and are especially important for observing nutritional and
health trends in our Nation's children.
Nutrition monitoring conducted by the Department of Health and
Human Services in partnership with the U.S. Department of Agriculture/
Agricultural Research Service is a unique and critically important
surveillance function in which dietary intake, nutritional status, and
health status are evaluated in a rigorous and standardized manner.
Nutrition monitoring is an inherently governmental function and
findings are essential for multiple Government agencies, as well as the
public and private sector. Nutrition monitoring is essential to track
what Americans are eating, inform nutrition and dietary guidance
policy, evaluate the effectiveness and efficiency of nutrition
assistance programs, and study nutrition-related disease outcomes.
Funds are needed to ensure the continuation of this critical
surveillance of the Nation's nutritional status and the many benefits
it provides.
Through learning both what Americans eat and how their diets
directly affect their health, the NCHS is able to monitor the
prevalence of obesity and other chronic diseases in the U.S. and track
the performance of preventive interventions, as well as assess
`nutrients of concern' such as calcium, which are consumed in
inadequate amounts by many subsets of our population. Data such as
these are critical to guide policy development in the area of health
and nutrition, including food safety, food labeling, food assistance,
military rations and dietary guidance. For example, NHANES data are
used to determine funding levels for programs such as the Supplemental
Nutrition Assistance Program (SNAP) and the Women, Infants, and
Children (WIC) clinics, which provide nourishment to low-income women
and children.
To continue support for the agency and its important mission, ASN
recommends an fiscal year 2014 funding level of $162 million for NCHS.
Sustained funding for NCHS can help to ensure uninterrupted collection
of vital health and nutrition statistics, and will help to cover the
costs needed for technology and information security upgrades that are
necessary to replace aging survey infrastructure.
Thank you for the opportunity to submit testimony regarding fiscal
year 2014 appropriations for the National Institutes of Health and the
CDC/National Center for Health Statistics. Please contact John E.
Courtney, Ph.D., Executive Officer, if ASN may provide further
assistance. He can be reached at 9650 Rockville Pike, Bethesda,
Maryland 20814; or [email protected].
______
Prepared Statement of the American Society for Pharmacology &
Experimental Therapeutics
The American Society for Pharmacology and Experimental Therapeutics
(ASPET) is pleased to submit written testimony in support of the
National Institutes of Health (NIH) fiscal year 2014 budget. ASPET
recommends a budget of at least $32 billion for the NIH in fiscal year
2014.
Sustained growth for the NIH should be an urgent national priority.
Research funded by the NIH improves public health, stimulates our
economy and improves global competitiveness. Several years of flat
funding and mandatory budget cuts required by sequestration in the
current fiscal year prevents and delays advances in medical research,
jeopardizes potential cures and eliminates jobs. Additionally, the
Nation will lose a generation of young scientists who see no prospects
for careers in biomedical research, creating a ``brain drain'' as many
graduate students, post-doctoral researchers, and early career
scientists leave the research enterprise or look for employment in
foreign countries.
The 5 percent sequestration cut further diminishes NIH's research
capacity that has already fallen 20 percent since 2003 as a result of
flat funding and inflation. With sequestration, NIH's purchasing power
will be reduced by nearly 25 percent since 2003. Continued erosion of
NIH's research capacity will accelerate further the diminishment of
American leadership and innovation in biomedical research. Without a
commitment to sustained funding for the NIH, the Nation's biomedical
research capacity will erode further.
A $32 billion budget for the NIH in fiscal year 2014 is a start to
help restore NIH's biomedical research capacity. Currently, the NIH
only can fund one in six grant applications, the lowest rate in the
agency's history. Furthermore, the number of research project grants
funded by NIH has declined every year since 2004.
A budget of at least $32 billion in fiscal year 2014 will help the
agency manage its research portfolio effectively without having to
withhold funding for existing grants to researchers throughout the
country. Scientific research takes time. Only through steady, sustained
and predictable funding increases can NIH continue to fund the highest
quality biomedical research to help improve the health of all Americans
and continue to make significant economic impact in many communities
across the country.
There is no substitute for a steady, sustained Federal investment
in biomedical research. Industry, venture capital, and private
philanthropy can supplement research but cannot replace the investment
in basic, fundamental biomedical research provided by NIH. Industry and
venture capital both face their own economic challenges and venture
capital investment in biomedicine has declined since 2007. Neither the
private sector nor industry will be able to fill a void for NIH funded
basic biomedical research. Much of industry support is applied research
that builds upon the discoveries generated from NIH-funded projects.
The majority of the investment in basic biomedical research that NIH
provides is broad and long-term providing a continuous development
platform for industry, which would not typically invest in research
that may be of higher risk and require several years to fully mature.
In addition to this long term view, NIH also has mechanisms in place to
rapidly build upon key technologies and discoveries that have the
ability to have significant impact on the health and well being of our
citizens. Further, industry research is focused on developing drugs
that are protected by patents and often does not make their data
publicly available.
Many of the basic science initiatives supported by NIH have led to
totally unexpected discoveries and insight that have transformed our
mechanistic understanding of and our ability to treat a wide range of
diseases
Diminished Support for NIH will Negatively Impact Human Health
Continued diminishment of funding for NIH will mean a loss of
scientific opportunities to discover new therapeutic targets. Without a
steady, sustained Federal investment in fundamental biomedical
research, scientific progress will be slower and potentially helpful
therapies or cures will not be developed. For example, more research is
needed on Parkinson's disease to help identify the causes of the
disease and help develop better therapies; discovery of gene variations
in age-related macular degeneration could result in new screening tests
and preventive therapies; more basic research is needed to focus on new
molecular targets to improve treatment for Alzheimer's disease; and
diminished support for NIH will prevent new and ongoing investigations
into rare diseases that FDA estimates almost 90 percent are serious or
life-threatening.
Historically, our past investment in basic biological research has
led to many innovative medicines. The National Research Council
reported that of the 21 drugs with the highest therapeutic impact, only
five were developed without input from the public sector. The
significant past investment in the NIH has provided major gains in our
knowledge of the human genome, resulting in the promise of
pharmacogenomics and a reduction in adverse drug reactions that
currently represent a major worldwide health concern. Several completed
human genome sequence analyses have pinpointed disease-causing variants
that have led to improved therapy and cures but further advances and
improvements in technology will be delayed or obstructed with
inadequate NIH funding.
Investing in NIH Helps America Compete Economically
A $32 billion budget in fiscal year 2013 will also help the NIH
train the next generation of scientists and provide a platform for
broader workforce development that is so critical to our Nation's
growth. Many individuals trained in the sciences via NIH support become
educators in high schools and colleges. These individuals also enter
into other aspects of technology development and evaluation in public
and private sectors to further enrich the community and accelerate
economic development.
This investment will help to create jobs and promote economic
growth. Limiting or cutting the NIH budget will mean forfeiting future
discoveries and jobs to other countries.
The U.S. share of global research and development investment from
1999-2009 is now only 31 percent, a decline of 18 percent. In contrast,
other nations continue to invest aggressively in science. China has
grown its science portfolio with annual increases to the research and
development budget averaging over 23 percent annually since 2000,
including a 26 percent increase in 2012. Russia plans to increase
support for research by 65 percent over the next 5 years. And while
Great Britain 2 years ago also imposed strict austerity measures to
address that Nation's debt problems, that Nation had the foresight to
keep its strategic investments in science at current levels. The
European Union, despite great economic distress and the severe debt
problems of its member nations, has proposed to increase spending on
research and innovation by 45 percent between 2014 and 2020.
NIH research funding catalyzes private sector growth. More than 83
percent of NIH funding is awarded to over 3,000 universities, medical
schools, teaching hospitals and other research institutions in every
State. One national study by an economic consulting firm found that
Federal (and State) funded research at the Nation's medical schools and
hospitals supported almost 300,000 jobs and added nearly $45 billion to
the U.S. economy. NIH funding also provides the most significant
scientific innovations of the pharmaceutical and biotechnology
industries.
CONCLUSION
ASPET appreciates the many competing and important spending
decisions the subcommittee must make. The Nation's deficit and debt
problems are great. However, NIH and the biomedical research enterprise
face a critical moment. The agency's contribution to the Nation's
economic and physical well being should make it one of the Nation's top
priorities. With enhanced and sustained funding, NIH can begin to
reverse its decline and help meet its potential to address many of the
more promising scientific opportunities that currently challenge
medicine. A budget of at least $32 billion in fiscal year 2014 will
allow the agency to begin moving forward to full program capacity,
exploiting more scientific opportunities for investigation, and
increasing investigator's chances of discoveries that prevent, diagnose
and treat disease. NIH should be restored to its role as a national
treasure, one that attracts and retains the best and brightest to
biomedical research and provides hope to millions of individuals
afflicted with illness and disease.
ASPET is a 5,100 member professional society whose members conduct
basic, translational, and clinical pharmacological research within the
academic, industrial and Government sectors. Our members discover and
develop new medicines and therapeutic agents that fight existing and
emerging diseases, as well as increase our knowledge regarding how
therapeutics affects humans.
______
Prepared Statement of the American Society of Hematology
The American Society of Hematology (ASH) thanks the subcommittee
for the opportunity to submit written testimony on the fiscal year 2014
Departments of Labor, Health and Human Services, and Education
Appropriations bill.
ASH represents approximately 14,000 clinicians and scientists
committed to the study and treatment of blood and blood-related
diseases. These diseases encompass malignant disorders such as
leukemia, lymphoma, and myeloma; life-threatening conditions, including
thrombosis and bleeding disorders; and congenital diseases such as
sickle cell anemia, thalassemia, and hemophilia. In addition,
hematologists have been pioneers in the fields of bone marrow
transplantation, stem cell biology and regenerative medicine, gene
therapy, and the development of many drugs for the prevention and
treatment of heart attacks and strokes.
Funding for Hematology Research: An Investment in the Nation's Health
Over the past 60 years, American biomedical research has led the
world in probing the nature of human disease. This research has led to
new medical treatments, saved innumerable lives, reduced human
suffering, and spawned entire new industries. This research would not
have been possible without support from the National Institutes of
Health (NIH). NIH-funded research drives medical innovation that
improves health and quality of life through new and better diagnostics,
improved prevention strategies, and more effective treatments. Federal
funding of basic biomedical research through the NIH is crucial, as
most of this discovery-based research is not supported by philanthropy
or private industry. Discoveries gained through basic research yield
the medical advances that improve the fiscal and physical health of the
country.
Funding for hematology research has been an important component of
this investment in the Nation's health. Most of the research that
produced cures and treatments for hematologic diseases has been funded
by the NIH. The study of blood and its disorders is a trans-NIH issue
involving many institutes at the NIH, including the National Heart,
Lung and Blood Institute (NHLBI), the National Cancer Institute (NCI),
the National Institute of Diabetes, Digestive and Kidney Diseases
(NIDDK), and the National Institute on Aging (NIA).
With the advances gained through an increasingly sophisticated
understanding of how the blood system functions, hematologists have
changed the face of medicine through their dedication to improving the
lives of patients. As a result, children are routinely cured of acute
lymphoblastic leukemia (ALL); more than 90 percent of patients with
acute promyelocytic leukemia (APL) are cured with a drug derived from
vitamin A; older patients suffering from previously lethal chronic
myeloid leukemia (CML) are now effectively treated with well-tolerated
pills; and patients with multiple myeloma are treated with new classes
of drugs.
Hematology advances also help patients with other types of cancers,
heart disease, and stroke. Blood thinners effectively treat or prevent
blood clots, pulmonary embolism, and strokes. Death rates from heart
attacks are reduced by new forms of anticoagulation drugs. Stem cell
transplantation can cure not only blood diseases but also inherited
metabolic disorders, while gene therapy holds the promise of
effectively treating even more genetic diseases. Even modest
investments in hematology research have yielded large dividends for
other disciplines.
The Future Promise of Hematology Research
The era of precision medicine has arrived. Insights into new
genetic and biologic markers can be used to understand what causes a
disease, the risk factors that predispose to disease, and how patients
will respond to a particular treatment. Translating these new
discoveries and technologies into personalized patient care offers the
possibility of better survival, less toxicity, disease prevention,
improved quality of life, and lower health-care costs. However, many
patients still lack effective therapy for malignant and non-malignant
hematologic diseases.
Research funding must increase to allow the major advances in
understanding the molecular defects behind hematologic diseases to be
translated into novel diagnostics and targeted therapeutics. Support
for research in the areas listed below will be important for future
progress:
--Stem Cells and Regenerative Medicine: Turn iPS cells into cures for
human diseases
--Myelodysplastic Syndrome and Acute Myeloid Leukemia: Find an
effective and personalized treatment for the elderly
--Hematopoietic Stem Cell Transplantation: Increase success rates by
improving management of graft-versus-host disease
--Sickle Cell Disease: Reduce the barriers to care, burden of pain,
end-organ injury, and premature death
--Deep-Vein Thrombosis and Venous Thromboembolism: Understand the
risk factors and develop targeted therapies
--Childhood Leukemia: Improve cure rates by performing coordinated
research that includes discovery and preclinical and clinical
testing of novel targeted therapies
--Translating Laboratory Advances into the Clinic: Use novel genomic
technologies to improve treatment of hematologic diseases
Sequestration Threatens Scientific Momentum
ASH is particularly concerned about the impact of continued cuts on
biomedical research supported by the NIH. At a time when we should be
investing more in research to save more lives, research funding is in
serious jeopardy.
After a decade of flat funding, the NIH budget after inflation is
about 20 percent lower than it was in 2003. ASH is deeply disturbed
about the impact that this effective ``un-doubling'' of the NIH budget,
combined with the more than 5 percent cut in NIH funding under
sequestration in the current fiscal year and additional planned cuts in
future fiscal years, will have on the ability to sustain the scientific
momentum that has contributed so greatly to our Nation's health and our
economic vitality. NIH's ability to continue current research capacity
and encourage promising new areas of science is, and will be,
significantly limited. Sequestration will result in cuts in extramural
grants and slowing momentum for the development of new treatments, or
even cures, for seriously ill patients with deadly diseases.
Additionally, perhaps one of the greatest concerns is the obstacle
these continued cuts will present to the next generation of scientists,
who will see training funds slashed and the possibility of sustaining a
career in research diminished. NIH also plays a significant role in
supporting the next generation of innovators, the young and talented
scientists and physicians who will be responsible for the breakthroughs
of tomorrow. The Society is especially concerned about the number of
scientists who have abandoned research careers; continued cuts will
exacerbate this exodus, forcing researchers to abandon potentially
life-enhancing research, negatively affecting job creation, and
seriously jeopardizing America's leadership in medical research
throughout the world.
Fiscal Year 2014 NIH Funding Request
ASH supports the recommendation of the Ad Hoc Group for Medical
Research that the subcommittee recognize NIH as a critical national
priority by providing at least $32 billion in funding in the fiscal
year 2014 Labor-HHS-Education Appropriations bill. This funding
recommendation represents the minimum investment necessary to avoid
further loss of promising research and at the same time allows the
NIH's budget to keep pace with biomedical inflation.
Hematology research offers enormous potential to better understand,
prevent, treat, and cure a number of blood-related and other
conditions. Recent investments have created dramatic new research
opportunities, spurring advancements and precipitating the promise of
personalized medicine that will yield far-reaching health and economic
benefits. Trials to find new therapies and cures for millions of
Americans with blood cancers, bleeding disorders, clotting problems,
and genetic diseases are just a few of the important projects that
could be delayed unless NIH continues to receive predictable and
sustained funding.
It is critically important that our country continues to capitalize
on the momentum of previous investments to drive research progress to
develop new treatments for serious disorders, train the next generation
of scientists, create jobs, and promote economic growth and innovation.
Adequate funding is necessary for NIH to sustain current research
capacity and encourage promising new areas of science and cures.
While ASH recognizes the deficit and the increasing debt the
country faces will require difficult decisions, it is also important to
understand that Federal investment in research and public health
programs saves lives, reduces health costs and strengthens the Nation.
Funding for hematology research is an investment in the Nation's
health. Research funding must increase to allow the major advances in
understanding the molecular defects behind hematologic diseases to be
translated into novel diagnostics and targeted therapeutics not only
for blood disorders, but other life-threatening diseases. ASH urges the
subcommittee to continue to be a champion for research and support at
least $32 billion in funding for NIH in fiscal year 2014. The American
people are depending on you to ensure the Nation does not lose the
health and economic benefits of our extraordinary commitment to
biomedical research.
Centers for Disease Control and Prevention (CDC) Public Health Response
for Blood Disorders
The Society also recognizes the important role of the Centers for
Disease Control and Prevention (CDC) in preventing and controlling
clotting, bleeding, and other hematologic disorders. Blood disorders--
such as sickle cell disease, anemia, blood clots, and hemophilia--are a
serious public health problem and affect millions of people each year
in the United States, cutting across the boundaries of age, race, sex,
and socioeconomic status. Men, women, and children of all backgrounds
live with the complications associated with these conditions, many of
which are painful and potentially life-threatening.
Through the Division of Blood Disorders in the Center on Birth
Defects and Developmental Disabilities (NCBDDD), CDC is working toward
developing a comprehensive public health agenda to promote and improve
the health of people with blood disorders. As a key component of this
public health approach, CDC staff invest in identifying, monitoring,
diagnosing, and investigating blood disorders to understand the
prevalence and effect of these disorders. Charting the characteristics
and outcomes of a disease population, such as those with sickle cell
disease or hemophilia, can provide insight into these questions, as
well as help identify the quality and cost of care issues that people
who are affected face. Additionally, population-based studies can
increase our understanding of risk factors that can result in severe
complications for people with blood disorders.
CDC is uniquely positioned to reduce the public health burden
resulting from blood disorders by contributing to a better
understanding of these conditions and their complications; ensuring
that prevention programs are developed, implemented, and evaluated;
ensuring that information is accessible to consumers and health care
providers; and encouraging action to improve the quality of life for
people living with or affected by these conditions. The Society is
supportive of maintaining the programs funded by the Division of Blood
Disorders and supports the requested budget authority of $20,672,000
for the Public Health Approach to Blood Disorders in the President's
fiscal year 2014 budget request. This funding will allow CDC to improve
health outcomes and limit complications to those who are risk or
currently have blood disorders, by promoting a comprehensive care
model; identifying and evaluating effective prevention strategies; and
increasing public and healthcare provider awareness of bleeding and
clotting disorders such as such as hemophilia and thrombosis, and
hemoglobinopathies, including sickle cell disease and thalassemia.
Thank you again for the opportunity to submit testimony. Please
contact Tracy Roades, ASH Legislative Advocacy Manager, at
[email protected], if you have any questions or need further
information concerning hematology research or ASH's fiscal year 2014
funding request.
______
Prepared Statement of the American Society of Nephrology
EXECUTIVE SUMMARY
The American Society of Nephrology (ASN) requests $32 billion in
funding for the National Institutes of Health (NIH) and $2 billion in
funding for NIH's National Institute of Diabetes and Digestive and
Kidney Diseases (NIDDK) in the fiscal year 2014 Labor-HHS-Education
Appropriations bill.
ASN is dedicated to the study, prevention, and treatment of kidney
disease, and the society's 14,000 plus members greatly respect your
leadership and commitment to preventing illness, treating disease, and
maintaining fiscal responsibility. Chronic kidney disease (CKD)
currently affects more than 20 million Americans, and more than 570,000
of them have irreversible kidney failure requiring life-sustaining
treatment with regular dialysis therapies.
The vast majority of research leading to advances in the care and
treatment of adults and children afflicted with kidney disease is
funded by the National Institutes of Health (NIH) broadly and the
National Institute of Diabetes and Digestive and Kidney Diseases
(NIDDK) specifically. Any reduction in this funding would seriously
reduce our ability to contain and reverse this disease, which costs
Americans enormous suffering, lost productivity, and foreshortened
spans of life.
Examples of critical discoveries arising from NIH-funded research
are numerous. For instance, investigative studies supported by NIH and
NIDDK led to a groundbreaking discovery that helps explain racial/
ethnic disparities that increase risks for kidney disease, which can
lead to earlier detection and treatment. The recent finding that
African Americans with two variants of the APOL1 gene are likely to
experience faster decline in kidney function, and earlier initiation of
hemodialysis than their peers without the gene, is a crucial step in
understanding differences in kidney disease progression across
different populations and how early interventions may improve their
outcomes.
Scientists supported by NIH and NIDDK also identified mutations in
two genes that help regulate blood pressure and salt balance in a rare,
heritable disease that causes high blood pressure, or hypertension.
Hypertension is a leading contributor to the development of kidney
failure, so this finding may improve hypertension management in
patients with kidney disease--possibly preventing kidney failure--and
could lead to better therapies for controlling high blood pressure in
the general patient population.
Moreover, funding from NIH and NIDDK enabled research that found
that people with antibodies that target a protein [the phospholipase A2
receptor called PLAR2] on a specific kidney cell develop a kidney
disorder, known as nephrotic syndrome that results in a harmful excess
protein in urine. Future therapies that reduce PLAR2 antibody levels
may help prevent people with nephrotic syndrome from progressing to
kidney failure.
Dialysis is covered by Medicare regardless of a patient's age or
disability status. Consequently, preventing kidney disease and
advancing the effectiveness of therapies for kidney failure--starting
with innovative research at NIDDK--would have a great impact at the
highest level of costs within the Centers for Medicare and Medicaid
Services. Perhaps most important, in human terms, the applied research
will help prevent greater suffering among those who would otherwise
progress to an even greater level of illness.
Sustained, predictable investment in research is the only way that
scientific investigations can be effective and lead to new discoveries.
With funding from NIH and NIDDK, scientists have been able to pursue
cutting-edge basic, clinical, and translational research. While ASN
fully understands the difficult economic environment and the intense
pressure you are under as an elected official to guide America forward
during these tough times, the society firmly believes that funding NIH
and NIDDK is a good investment to create jobs, support the next
generation of investigators, and ultimately improve the public health
of Americans.
Several recent studies have concluded that Federal support for
medical research is a major force in the economic health of communities
across the Nation.
It is critically important that the Nation continue to capitalize
on previous investments to drive research progress, train the next
generation of scientists, create new jobs, promote economic growth, and
maintain leadership in the global innovation economy--particularly as
other countries increase their investments in scientific research. Most
important, a failure to maintain and strengthen NIH and NIDDK's ability
to support the groundbreaking work of researchers across the country
carries a palpable human toll, denying hope to the millions of patients
awaiting the possibility of a healthier tomorrow.
ASN strongly recommends that the fiscal year 2014 Labor-HHS-
Education Appropriations bill uphold its longstanding legacy of
bipartisan support for biomedical research.
Should you have any questions or wish to discuss NIH, NIDDK, or
kidney disease research in more detail, please contact ASN Manager of
Policy and Government Affairs Rachel Shaffer at [email protected].
ABOUT ASN
The American Society of Nephrology (ASN) is a 501(c)(3) non-profit,
tax-exempt organization that leads the fight against kidney disease by
educating the society's more than 14,000 physicians, scientists, and
other healthcare professionals, sharing new knowledge, advancing
research, and advocating the highest quality care for patients. For
more information, visit ASN's website at www.asn-online.org.
______
Prepared Statement of the American Society of Pediatric Nephrology
I am Dr. Joseph Flynn, President of the American Society of
Pediatric Nephrology (ASPN). I am pleased to submit written testimony
on behalf of the ASPN in support of Federal funding for the National
Institutes of Health, including the National Institutes for Diabetes,
Digestive and Kidney Diseases (NIDDK) and Eunice Kennedy Shriver
National Institute for Child Health and Human Development (NICHD). In
fiscal year 2014 we urge you to support an appropriation of $32 billion
for the NIH, including at least $2.03 billion for NIDDK and $1.37
billion for NICHD.
Founded in 1969, the American Society for Pediatric Nephrology
(ASPN) is a professional society composed of pediatric nephrologists
whose goal is to promote optimal care for children with kidney disease
and to disseminate advances in the clinical practice and basic science
of pediatric nephrology. The ASPN currently has over 700 members,
making it the primary representative of the pediatric nephrology
community in North America.
The mission of the National Institute of Diabetes and Digestive and
Kidney Diseases (NIDDK) is to support and conduct research to combat
diabetes and other endocrine and metabolic diseases, liver and other
digestive diseases, nutritional disorders, obesity, and kidney,
urologic, and hematologic diseases. The NIDDK's broad mission covers
chronic, common and costly diseases that have very tangible monetary
consequences for our Nation. For example, estimates of chronic kidney
disease (CKD) show that more than 23 million Americans are affected,
and over 550,000 have irreversible end-stage renal disease (ESRD).
ESRD's cost to our bottom line is also felt at the Centers for Medicare
and Medicaid Services, as ESRD is covered by Medicare regardless of a
patient's age. NIDDK-funded investigations intended to prevent this
disease would have a significant impact on many Americans.
Without research funded by the NIH and NIDDK, advances in the care
and treatment of adults and children afflicted with kidney disease
would not have been accomplished. For instance, hereditary diseases
such as cystinosis--a metabolic disorder that affects the kidneys,
eyes, thyroid, pancreas, and brain--can now be treated so as to prevent
or delay its worst effects on children. The NIDDK supports a wide range
of medical research through grants to universities and other medical
research institutions across the country. The Institute also supports
Government scientists who conduct basic, translational, and clinical
research across a broad spectrum of research topics and serious,
chronic diseases and conditions related to the Institute's mission. In
addition, the NIDDK supports research training for students and
scientists at various stages of their careers and a range of education
and outreach programs to bring science-based information to patients
and their families, health care professionals, and the public.
Developing the next generation of researchers through grant support
will solidify future novel therapeutics and improved outcomes for
children with kidney disease.
Established in 1963, the NICHD was initially founded to support the
world's best minds in investigating human development throughout the
entire lifespan, focusing on understanding developmental disabilities,
including intellectual and developmental disabilities, and illuminating
important events that occur during pregnancy. Since then, the NICHD has
achieved an impressive array of scientific advances in its pursuit to
enhance lives throughout all stages of human development, from
preconception through adulthood, improving the health of children,
adults, families, communities, and populations. Recent efforts by the
NICHD to improve the availability and safety of drugs for children will
have significant impact on pediatric therapeutics. Research supported
and conducted by the NICHD has helped to explain the unique health
needs of many, and has brought about novel and effective ways to
fulfill them. An estimated 150,000 children and adolescents currently
suffer from kidney disease; about 10,000 of them suffer from ESRD and
receive chronic dialysis or have a kidney transplant. Children and
adolescents undergoing dialysis or transplants are different from
adults, with different underlying diseases, dependence on adult
caregivers, and ongoing growth and development. Renal transplantation
is the best treatment for children who reach ESRD, as transplant allows
better growth and school attendance and a more normal life for affected
children and families. The ASPN works to educate the public, Members of
Congress and their staffs, and the medical community about these unique
needs of pediatric patients with kidney disease. Nonetheless, without
adequate funding from the NIH, pediatric nephrologists are unable to
focus on this challenging pediatric population.
The ASPN supports improving the quality of life for pediatric
kidney patients, especially those with kidney transplants, through the
following initiatives:
Increased research focused on the prevention and early
identification of pediatric kidney disease to decrease the growing need
for renal transplantation.--The dramatic increase in childhood obesity
puts more than 15 percent of America's children at risk for Type 2
diabetes, hypertension, and chronic kidney disease later in life. The
fastest growing segment of patients waiting for a kidney transplant
today have ESRD related to complications of diabetes and hypertension,
making it ever more difficult to keep up with the demand for kidney
transplants. The ASPN advocates for more research to address ways to
keep children with Type 2 diabetes and hypertension from becoming
adolescents and young adults with ESRD. We also advocate for additional
research to investigate the common causes of CKD and ESRD including
progressive glomerular diseases and congenital anomalies of the kidney
and urinary tract. Furthermore, we strongly support investigations into
common sequelae of CKD and ESRD such as acidosis and kidney stones as
well as those that can accelerate the progression from CKD to ESRD such
as urinary tract infections, toxins, and acute kidney injury.
Improved transition of patients from pediatric to adult medical
care.--The ASPN collaborates with pediatric and adult nephrology
professionals to improve the transition of adolescents to adult care.
The ASPN advocates for better access to medical insurance coverage and
anti-rejection medications for transitioning patients to help reduce
the high incidence of loss of transplant function in adolescents and
young adults. Kidney disease continues to be a major cause of illness
and death among the most vulnerable segment of the population--our
children--and research being conducted at the NIH will allow us to
better understand how to reduce its impact. An estimated 150,000
children and adolescents currently suffer from kidney diseases for
which a cure or treatment does not exist; about 10,000 of them suffer
from ESRD and are on dialysis or have a kidney transplant. With
adequate funding for NIH, scientists will work to find cures or more
effective treatments.
We urge you to support the work conducted by NIDDK for research
focused on pediatric kidney disease. ASPN is enthusiastic and
encouraged by the discoveries made by such research. Because many adult
kidney diseases originate prenatally or during childhood, we hope you
can support NIDDK efforts to assign a higher priority to research that
explores pediatric renal disease, focusing on the causes, outcomes and
consequences of such diseases. Due to the unique challenges of
recruiting children into clinical trials, NIDDK should fund research
endeavors that include support for infrastructure and the enhancement
of collaborative and comparative multicenter pediatric prospective
clinical/translational trials that aim to improve patient outcomes.
Additionally, normal child development is essential for promoting a
healthy adult society. Diseases that pose a substantial burden in
adults, such as hypertension and chronic kidney disease, may have their
origins during childhood years or may be patterned in early fetal life.
Cognitive development and cardiovascular health in children, which
depend upon normal physiology, are essential for healthy, productive
adult outcomes. Yet the importance of normal kidneys to normal
intrauterine and childhood growth, and its impact on the risk of
subsequent disease later in life, has not been well studied. We urge
you to support collaboration between NICHD and NIDDK to undertake
efforts to examine the role of normal kidney development and/or
function in neonatal and child health. Specific opportunities to be
addressed include: kidney function in low-birth weight infants; how
chronic acidosis, untreated hypertension or recurrent urinary tract
infections affect child development; the impact of childhood onset
hypertension on adult cardiovascular health; and identification of
genetic factors that may result in kidney injury and progression of
hypertension and chronic kidney disease.
Thank you for the opportunity to provide testimony in support of
these vital programs. We look forward to continuing to work with you in
the future on these important issues.
______
Prepared Statement of the American Society of Plant Biologists
On behalf of the American Society of Plant Biologists (ASPB), we
would like to thank the subcommittee for its support of the National
Institutes of Health (NIH). ASPB and its members strongly believe that
sustained investments in scientific research will be a critical step
toward economic recovery and job creation in our Nation. ASPB asks that
the subcommittee Members encourage increased support for plant-related
research within NIH; 25 percent of our medicines originate from
discoveries related to plant natural products, and such research has
contributed in innumerable ways to improving the lives and health of
Americans and people throughout the world.
ASPB is an organization of some 4,500 professional plant biology
researchers, educators, students, and postdoctoral scientists with
members across the Nation and throughout the world. A strong voice for
the global plant science community, our mission--achieved through work
in the realms of research, education, and public policy--is to promote
the growth and development of plant biology, to encourage and
communicate research in plant biology, and to promote the interests and
growth of plant scientists in general.
Plant Biology Research and America's Future
Among many other functions, plants form much of the base of the
food chain upon which all life depends. Importantly, plant research is
also helping make many fundamental contributions in the area of human
health, including that of a sustainable supply and discovery of plant-
derived pharmaceuticals, nutriceuticals, and alternative medicines.
Plant research also contributes to the continued, sustainable,
development of better and more nutritious foods and the understanding
of basic biological principles that underpin improvements in the health
and nutrition of all Americans.
Plant Biology and the National Institutes of Health
Plant science and many of our ASPB member research activities have
enormous positive impacts on the NIH mission to pursue ``fundamental
knowledge about the nature and behavior of living systems and the
application of that knowledge to extend healthy life and reduce the
burdens of illness and disability.'' In general, plant research aims to
improve the overall human condition--be it food, nutrition, medicine or
agriculture--and the benefits of plant science research readily extend
across disciplines. In fact, plants are often the ideal model systems
to advance our ``fundamental knowledge about the nature and behavior of
living systems'' as they provide the context of multi-cellularity while
affording ease of genetic manipulation, a lesser regulatory burden, and
maintenance requirements that are less expensive than those required
for the use of animal systems.
Many fundamental biological components and mechanisms (e.g., cell
division, viral and bacterial invasion, polar growth, DNA methylation
and repair, innate immunity signaling and circadian rhythms) are shared
by both plants and animals. For example, a process known as RNA
interference, which has potential application in the treatment of human
disease, was first discovered in plants. Subsequent research eventually
led to two American scientists, Andrew Fire and Craig Mello, earning
the 2006 Nobel Prize in Physiology or Medicine. More recently
scientists engineered a class of proteins called TALENs capable of
precisely editing genomes to potentially correct mutations that lead to
disease. That these therapeutic proteins are derived from others
initially discovered in a plant pathogen exemplifies the application of
plant biology research to improving human health. These important
discoveries again reflect the fact that some of the most important
biological discoveries applicable to human physiology and medicine can
find their origins in plant-related research endeavors.
Health and Nutrition.--Plant biology research is also central to
the application of basic knowledge to ``extend healthy life and reduce
the burdens of illness and disability.'' Without good nutrition, there
cannot be good health. Indeed, a World Health Organization study on
childhood nutrition in developing countries concluded that over 50
percent of child deaths under the age of five could be attributed to
malnutrition's effects in weakening the immune system and exacerbating
common illnesses such as respiratory infections and diarrhea.
Strikingly, most of these deaths were not linked to severe
malnutrition, but chronic nutritional deficiencies brought about by
overreliance on single crops for primary staples. Plant researchers are
working today to address the root cause of this problem by balancing
the nutritional content of major crop plants to provide the full range
of essential micronutrients in plant-based diets.
By contrast to developing countries, obesity, cardiac disease, and
cancer take a striking toll in the developed world. Research to improve
and optimize concentrations of plant compounds known to have, for
example, anti-carcinogenic properties, will hopefully help in reducing
disease incidence rates. Ongoing development of crop varieties with
tailored nutraceutical content is an important contribution that plant
biologists can and are making toward realizing the long-awaited goal of
personalized medicine, especially for preventative medicine.
Drug Discovery.--Plants are also fundamentally important as sources
of both extant drugs and drug discovery leads. In fact, 60 percent of
anti-cancer drugs in use within the last decade are of natural product
origin--plants being a significant source. An excellent example of the
importance of plant-based pharmaceuticals is the anti-cancer drug
taxol, which was discovered as an anti-carcinogenic compound from the
bark of the Pacific yew tree through collaborative work involving
scientists at the NIH National Cancer Institute and plant natural
product chemists. Taxol is just one example of the many plant compounds
that will continue to provide a fruitful source of new drug leads.
While the pharmaceutical industry has largely neglected natural
products-based drug discovery in recent years, research support from
NIH offers yet another paradigm. Multidisciplinary teams of plant
biologists, bioinformaticians, and synthetic biologists are being
assembled to develop new tools and methods for natural products
discovery and creation of new pharmaceuticals. We appreciate NIH's
current investment into understanding the biosynthesis of natural
products through transcriptomics and metabolomics of medicinal plants.
The recently released ``Genomes to Natural Products'' funding
opportunity is also to be applauded as a potential avenue for new
plant-related medicinal research, and we strongly encourage the
continuation of these types of investments and other plant-related
initiatives which can help further achievement of the NIH mission.
Conclusion
Although NIH does recognize that plants serve many important roles,
the boundaries of plant-related research are expansive and integrate
seamlessly and synergistically with many different disciplines that are
also highly relevant to NIH. As such, ASPB asks the subcommittee to
provide direction to NIH to support additional plant research in order
to continue to pioneer new discoveries and new methods with
applicability and relevance in biomedical research.
Thank you for your consideration of our testimony on behalf of the
American Society of Plant Biologists. For more information about ASPB,
please see www.aspb.org.
______
Prepared Statement of the American Society of Tropical Medicine and
Hygiene
The American Society of Tropical Medicine and Hygiene (ASTMH)--the
principal professional membership organization representing, educating,
and supporting scientists, physicians, clinicians, researchers,
epidemiologists, and other health professionals dedicated to the
prevention and control of tropical diseases--appreciates the
opportunity to submit testimony to the House Labor, Health and Human
Services, and Education Appropriations Subcommittee. The benefits of
U.S. investment in tropical diseases are both humanitarian and
diplomatic. With this in mind, we respectfully request that the
subcommittee fully fund the NIH and CDC in the fiscal year 2014 LHHS
appropriations bill in order to ensure a continued U.S. investment in
global health and tropical medicine research and development,
specifically:
National Institutes of Health:
--Malaria and neglected tropical disease (NTD) treatment, control,
and research and development efforts within the National
Institute of Allergy and Infectious Diseases (NIAID);
--Expanded focus on diarrheal disease within the NIH;
--Research capacity development in countries where populations are at
heightened risk for malaria, NTDs, and diarrheal diseases
through the Fogarty International Center (FIC); and
--Research on infectious diseases transmitted by ticks, fleas, and
mosquitoes that occur within the borders of the U.S. as well as
in tropical and subtropical regions abroad.
The Centers for Disease Control and Prevention:
--The Center for Global Health, which includes CDC's work in malaria
and NTDs; and
--The National Center for Emerging & Zoonotic Infectious Diseases,
which is responsible for protecting the U.S. from new and
emerging infections spread by mosquitoes and ticks.
return on investment of u.s.-funded research
CDC and NIH play essential roles in R&D for tropical medicine and
global health. Both agencies are at the forefront of the new science
that leads to tools to combat malaria and NTDs. This research provides
jobs for American researchers and an opportunity for the U.S. to be a
leader in the fight against global disease, in addition to creating
lifesaving new drugs and diagnostics to some of the poorest, most at-
risk people in the world.
TROPICAL DISEASE
Malaria and Parasitic Disease.--Malaria remains a global emergency
affecting mostly poor women and children; it is an acute, sometimes
fatal disease. Despite being treatable and preventable, malaria is one
of the leading causes of death and disease worldwide. Approximately
every 30 seconds, a child dies of malaria--a total of about 800,000
under the age of 5 every year. The World Health Organization (WHO)
estimates that one half of the world's people are at risk for malaria
and that there are 108 malaria-endemic countries.
Neglected Tropical Diseases.--NTDs are a group of chronic parasitic
diseases, which represent the most common infections of the world's
poorest people. These infections have been revealed as the stealth
reason why the ``bottom billion''--the 1.4 billion poorest people
living below the poverty line--cannot escape poverty, because of the
effects of these diseases on reducing child growth, cognition and
intellect, and worker productivity.
Diarrheal Disease.--The child death toll due to diarrheal illnesses
exceeds that of AIDS, tuberculosis, and malaria combined. In poor
countries, diarrheal disease is second only to pneumonia as the cause
of death among children under 5 years old. Every week, 31,000 children
in low-income countries die from diarrheal diseases.
The United States has a long history of leading the fight against
tropical diseases that cause human suffering and pose financial burden
that can negatively impact a country's economic and political
stability. Tropical diseases, many of them neglected for decades,
impact U.S. citizens working or traveling overseas, as well as our
military personnel. Additionally, some diseases such as dengue fever
have been found in the U.S.
NATIONAL INSTITUTES OF HEALTH
National Institute of Allergy and Infectious Diseases.--A long-term
investment is critical to achieve the drugs, diagnostics, and research
capacity needed to control malaria and NTDs. NIAID is the lead
institute for malaria and NTD research.
ASTMH encourages the subcommittee to:
--Increase funding for NIH to expand the agency's investment in
malaria, NTDs, tick-borne infections, and diarrheal disease
research and coordinate with other agencies to maximize
resources and ensure development of basic discoveries into
usable solutions;
--Specifically invest in NIAID to support its role at the forefront
of these efforts to developing the next generation of drugs,
vaccines, and other interventions; and
--Urge NIH to include enteric infections and neglected diseases in
its RCDC process on the RePORT website to outline the work that
is being done in these important research areas.
Fogarty International Center.--Biomedical research has provided
major advances in the treatment and prevention of malaria, NTDs, and
other infectious diseases. These benefits, however, are often slow to
reach the people who need them most. FIC works to strengthen research
capacity in countries where populations are particularly vulnerable to
threats posed by malaria, NTDs, and other infectious diseases. This
maximizes the impact of U.S. investments and is critical to fighting
malaria and other tropical diseases.
ASTMH encourages the subcommittee to:
--Allocate sufficient resources to FIC in fiscal year 2014 to
increase these efforts, particularly as they address the
control and treatment of malaria, NTDs, and diarrheal disease.
the centers for disease control and prevention
Malaria and Parasitic Disease.--Malaria has been eliminated as an
endemic threat in the United States for over fifty years, and CDC
remains on the cutting edge of global efforts to reduce the toll of
this deadly disease. CDC efforts on malaria and parasitic disease fall
into three broad categories: prevention, treatment, and monitoring/
evaluation of efforts. The agency performs a wide range of basic
research within these categories, such as:
--Conducting research on antimalarial drug resistance to inform new
strategies and prevention approaches;
--Assessing new monitoring, evaluation, and surveillance strategies;
--Conducting additional research on malaria vaccines, including field
evaluations; and
--Developing innovative public health strategies for improving access
to antimalarial treatment and delaying the appearance of
antimalarial drug resistance.
ASTMH encourages the subcommittee to:
--Fund a comprehensive approach to effective and efficient malaria
and parasitic disease, including adequately funding the
important contributions of CDC in malaria and parasitic disease
at no less than $18 million.
Neglected Topical Diseases.--CDC currently receives zero dollars
directly for NTD work outside of parasitic diseases; however, this
should be changed to allow for more comprehensive work to be done on
NTDs at CDC. CDC has a long history of working on NTDs and has provided
much of the science that underlies the global policies and programs in
existence today.
ASTMH encourages the subcommittee to:
--Provide direct funding to CDC to continue its work on NTDs,
including but not limited to parasitic diseases; and
--Urge CDC to continue its monitoring, evaluation, and technical
assistance in these areas as an underpinning of efforts to
control and eliminate these diseases.
Vector-Borne Disease Program (VBDP).--Through the VBDP, researchers
are able to practice essential surveillance and monitoring activities
that protect the U.S. from deadly infections before they reach our
borders and to address problems of tick- and flea-transmitted
infections such as Lyme disease and a dozen other infections, some of
which are life-threatening within the U.S. The world is becoming
increasingly smaller as international travel increases and new
pathogens are introduced quickly into new environments. We have seen
this with SARS, avian influenza, and now, dengue fever, in the United
States. Arboviruses like dengue, and others, such as chikungunya, are a
constant threat to travelers, and to Americans generally.
ASTMH encourages the subcommittee to:
--Ensure that CDC maintain these activities by continuing CDC funding
for VBDP activities through the National Center for Emerging
and Infectious Zoonotic Diseases.
CONCLUSION
Thank you for your attention to these important U.S. and global
health matters. We know Congress and the American people face many
challenges in choosing funding priorities, and we hope you will provide
the requested fiscal year 2014 resources to those programs identified
above that meet critical needs for Americans and people around the
world. ASTMH appreciates the opportunity to share its expertise, and we
thank you for your consideration of these requests that will help
improve the lives of Americans and the global poor.
______
Prepared Statement of the American Thoracic Society
SUMMARY: FUNDING RECOMMENDATIONS
[In millions $]
------------------------------------------------------------------------
------------------------------------------------------------------
National Institutes of Health...................... 32,000
National Heart, Lung & Blood Institute......... 3,214
National Institute of Allergy & Infectious 4,701
Disease.......................................
National Institute of Environmental Health 717.7
Sciences......................................
Fogarty International Center................... 72.7
National Institute of Nursing Research......... 151
Centers for Disease Control and Prevention......... 7,800
National Institute for Occupational Safety & 293.6
Health........................................
Asthma Programs................................ 25.3
Div. of Tuberculosis Elimination............... 243
Office on Smoking and Health................... 197.1
National Sleep Awareness Roundtable (NSART).... 1
------------------------------------------------------------------------
The American Thoracic Society (ATS) is pleased to submit our
recommendations for programs in the Labor Health and Human Services and
Education Appropriations Subcommittee purview. Founded in 1905, the ATS
is an international education and scientific society of 15,000 members
that focuses on respiratory and critical care medicine. ATS members
help prevent and fight respiratory disease through research, education,
patient care and advocacy.
Lung Disease in America
Diseases of breathing constitute the third leading cause of death
in the U.S., responsible for one of every seven deaths. Diseases
affecting the respiratory (breathing) system include chronic
obstructive pulmonary disease (COPD), lung cancer, tuberculosis,
influenza, sleep disordered breathing, pediatric lung disorders,
occupational lung disease, asthma, and critical illness. The death rate
due to COPD has doubled within the last 30 years and is still
increasing, while the rates for the other three top causes of death
(heart disease, cancer and stroke) have decreased by over 50 percent.
The number of people with asthma in the U.S. has surged over 150
percent since 1980 and the root causes of the disease are still not
fully known. Research into the diagnosis, treatment and prevention of
lung diseases should be expanded to meet the increasing public health
burden of these diseases.
National Institutes of Health
The NIH is the world's leader in groundbreaking biomedical health
research into the prevention, treatment and cure of diseases such as
lung cancer, COPD and tuberculosis. But due to eroded funding, the
success rate for NIH research grants has plummeted to below 13 percent,
which means that more than 85 percent of meritorious research is not
being funded. The implementation of budget sequestration in fiscal year
2013 will cut NIH by an additional $1.5 billion, which will result in
the elimination of at least 1,000 grant opportunities and cuts of up to
10 percent for continuing grants. These cuts will result in the halting
of vital research into diseases affecting millions around the world. We
ask the subcommittee to provide $32 billion in funding for the NIH in
fiscal year 2014.
Despite the rising lung disease burden, lung disease research is
underfunded. In fiscal year 2012, lung disease research represented
just 23.2 percent of the National Heart Lung and Blood Institute's
(NHLBI) budget. Although lung disease is the third leading cause of
death in the U.S., research funding for the disease is a small fraction
of the money invested for the other three leading causes of death. In
order to stem the devastating effects of lung disease, research funding
must continue to grow.
Centers for Disease Control and Prevention
In order to ensure that health promotion and chronic disease
prevention are given top priority in Federal funding, the ATS supports
a funding level for the Centers for Disease Control and Prevention
(CDC) that enables it to carry out its prevention mission, and ensure a
translation of new research into effective State and local public
health programs. We ask that the CDC budget be adjusted to reflect
increased needs in chronic disease prevention, infectious disease
control, including TB control and occupational safety and health
research and training. The ATS recommends a funding level of $7.8
billion for the CDC in fiscal year 2014.
COPD
COPD is the third leading cause of death in the United States and
the third leading cause of death worldwide. CDC estimates that 12
million patients have COPD; an additional 12 million Americans are
unaware that they have this life threatening disease. In 2010, the
estimated economic cost of lung disease in the U.S. was $186 billion,
including $117 billion in direct health expenditures and $69 billion in
indirect morbidity and mortality costs.
Despite the growing burden of COPD, the U.S. does not have a public
health action plan on the disease. The ATS is pleased that the NHLBI is
developing a national action plan, in coordination with the Centers for
Disease Control and Prevention (CDC) to expand COPD surveillance,
develop public health interventions and expand research public
awareness of the disease. The NHLBI has shown successful leadership in
educating the public about COPD through the COPD Education and
Prevention Program.
CDC has an additional role to play in this work. We urge CDC to
include COPD-based questions to future CDC health surveys, including
the National Health and Nutrition Evaluation Survey (NHANES) and the
National Health Information Survey (NHIS).
Tobacco Control
Cigarette smoking is the leading preventable cause of death in the
U.S., responsible for one in five deaths annually. The ATS is pleased
that the Department of Health and Human Services has made tobacco use
prevention a key priority. The CDC's Office of Smoking and Health
coordinates public health efforts to reduce tobacco use. In order to
significantly reduce tobacco use within 5 years, as recommended by the
subcommittee in fiscal year 2010, the ATS recommends a total funding
level of $197 million for the Office of Smoking and Health in fiscal
year 2014.
Asthma
Asthma is a significant public health problem in the United States.
Approximately 25 million Americans currently have asthma. In 2010,
3,388 Americans died as a result of asthma exacerbations. Asthma is the
third leading cause of hospitalization among children under the age of
15 and is a leading cause of school absences from chronic disease. The
disease costs our healthcare system over $50.1 billion per year.
African Americans have the highest asthma prevalence of any racial/
ethnic group and the age-adjusted death rate for asthma in this
population is three times the rate in whites. One of the keys to
reducing asthma exacerbations and the associated healthcare costs is
through patient education on asthma management. A study published in
the American Journal of Respiratory Critical Care in 2012 found that
for every dollar invested in asthma interventions, there was a $36
benefit. We ask that the subcommittee's appropriations request for
fiscal year 2014 that funding for CDC's National Asthma Control Program
be maintained at a funding level of at least $25.3 million and that the
National Asthma Control Program remain as a distinct, stand-alone
program.
Sleep
Several research studies demonstrate that sleep-disordered
breathing and sleep-related illnesses affect an estimated 50-70 million
Americans. The public health impact of sleep illnesses and sleep
disordered breathing is still being determined, but is known to include
increased mortality, traffic accidents, cardiovascular disease,
obesity, mental health disorders, and other sleep-related
comorbidities. Despite the increased need for study in this area,
research on sleep and sleep-related disorders has been underfunded. The
ATS recommends a funding level of $1 million in fiscal year 2014 to
support activities related to sleep and sleep disorders at the CDC,
including for the National Sleep Awareness Roundtable (NSART),
surveillance activities, and public educational activities. The ATS
also recommends an increase of funding for research on sleep disorders
at the Nation Center for Sleep Disordered Research (NCSDR) at the
NHLBI.
Tuberculosis
Tuberculosis (TB) is the second leading global infectious disease
killer, claiming 1.4 million lives each year. In the U.S., every State
reports cases of TB annually. Drug-resistant TB poses a particular
challenge to domestic TB control due to the high costs of treatment and
intensive health care resources required. Treatment costs for
multidrug-resistant (MDR) TB range from $100,000 to $300,000. The
global TB pandemic and spread of drug resistant TB present a persistent
public health threat to the U.S.
Despite declining rates, persistent challenges to TB control in the
U.S. remain. Specifically: (1) racial and ethnic minorities continue to
suffer from TB more than majority populations; (2) foreign-born persons
are adversely impacted; (3) sporadic outbreaks occur, outstripping
local capacity; (4) drug resistant TB cases are on the rise; and (5)
there are critical needs for new diagnostics, treatment and prevention
tools.
The Comprehensive Tuberculosis Elimination Act (CTEA, Public Law
110-392), enacted in 2008, reauthorized programs at CDC with the goal
of putting the U.S. back on the path to eliminating TB. The ATS,
recommends a funding level of $243 million in fiscal year 2014 for
CDC's Division of TB Elimination, as authorized under the CTEA, and
encourages the NIH to expand efforts to develop new tools to reduce the
rising global TB burden.
Critical Illness
The burden associated with the provision of care to critically ill
patients is enormous, and is anticipated to increase significantly as
the population ages. Approximately 200,000 people in the United States
require hospitalization in an intensive care unit because they develop
a form of pulmonary disease called Acute Lung Injury. Despite the best
available treatments, 75,000 of these individuals die each year from
this disease. This is the approximately the same number of deaths each
year due to breast cancer, colon cancer, and prostate cancer combined.
Investigation into diagnosis, treatment and outcomes in critically ill
patients should be a priority, and the NIH should be encouraged and
funded to coordinate investigation in this area in order to meet this
growing national imperative.
Pediatric Lung Disease
The ATS is pleased to report that infant death rates for various
lung diseases have declined for the past 10 years. In 2009, of the 10
leading causes of infant mortality, 4 were lung diseases or had a lung
disease component. Many of the precursors of adult respiratory disease
start in childhood. Many children with respiratory illness grow into
adults with COPD. It is estimated that 7.1 million children suffer from
asthma. While some children appear to outgrow their asthma when they
reach adulthood, 75 percent will require life-long treatment and
monitoring of their condition. The ATS encourages the NHLBI to continue
with its research efforts to study lung development and pediatric lung
diseases.
Fogarty International Center
The Fogarty International Center (FIC) provides training grants to
U.S. universities to teach AIDS treatment and research techniques to
international physicians and researchers. Because of the link between
AIDS and TB infection, FIC has created supplemental TB training grants
for these institutions to train international health professionals in
TB treatment and research. The ATS recommends Congress provide $72.8
million for FIC in fiscal year 2014, to allow expansion of the TB
training grant program from a supplemental grant to an open competition
grant.
Researching and Preventing Occupational Lung Disease
The ATS urges the subcommittee to provide at least level funding
for the National Institute for Occupational Safety and Health (NIOSH).
NIOSH, within the Centers for Disease Control and Prevention (CDC), is
the primary Federal agency responsible for conducting research and
making recommendations for the prevention of work-related illness and
injury. NIOSH provides national and world leadership to avert workplace
illness, injury, disability, and death by gathering information,
conducting scientific research, and translating this knowledge into
products and services. NIOSH supports programs in every State to
improve the health and safety of workers.
The ATS appreciates the opportunity to submit this statement to the
subcommittee.
______
Prepared Statement of the Americans for Nursing Shortage Relief (ANSR)
The organizations of the ANSR Alliance greatly appreciate the
opportunity to submit written testimony recommending $251 million for
the Title VIII Nursing Workforce Development Programs at the Health
Resources and Services Administration (HRSA) and $20 million for the
Nurse Managed Health Clinics as authorized under Title III of the
Public Health Service Act. We represent a diverse cross-section of
health care and other related organizations, health care providers, and
supporters of nursing issues (http://www.ansralliance.org/Members.html)
that have united to address the national nursing shortage. ANSR stands
ready to work with Congress to advance programs and policy that will
ensure our Nation has a sufficient and adequately prepared nursing
workforce to provide quality care to all well into the 21st century.
The Nursing Shortage
Nursing is the largest health care profession in the United States.
Nurses work in a variety of settings, including primary care, public
health, long-term care, surgical care facilities, schools, and
hospitals. The March 2008 study, The Future of the Nursing Workforce in
the United States: Data, Trends, and Implications, calculates a
projected demand of 500,000 full-time equivalent registered nurses by
2025. According to the U.S. Bureau of Labor Statistics, due to the
country's gaining population and increasing health needs, employment of
registered nurses is expected to grow by 26 percent from 2010 to 2020
resulting in 711,900 new jobs. The Title VIII Nursing Workforce
Education Programs will help fill these vacancies by supporting
training programs designed to meet these health care needs.
The Title VIII Nursing Workforce and Education programs provide
training for entry-level and advanced degree nurses to improve the
access to, and the quality of, health care in underserved areas. These
programs provide the largest source of Federal funding for nursing
education, providing loans, scholarships, traineeships, and
programmatic support that, between fiscal year 2005 and 2010, supported
over 400,000 nurses and nursing students as well as numerous academic
nursing institutions and health care facilities.
The Desperate Need for Nurse Faculty
Nursing vacancies exist throughout the entire health care system,
including long-term care, home care and public health. Government
estimates indicate that this situation only promises to worsen due to
an insufficient supply of individuals matriculating in nursing schools,
an aging existing workforce, and the inadequate availability of nursing
faculty to educate and train the next generation of nurses. At the
exact same time that the nursing shortage is expected to worsen, the
baby boom generation is aging and the number of individuals with
serious, life-threatening, and chronic conditions requiring nursing
care will increase.
Each year, nursing schools turn away tens of thousands of qualified
applications at all degree levels due to an insufficient number of
faculty, clinical sites, classroom space, clinical preceptors, and
budget constraints. Securing and retaining adequate numbers of faculty
is essential to ensure that all individuals interested in--and
qualified for--nursing school can matriculate in the year that they are
accepted.
ANSR supports the need for sustained attention on the efficacy and
performance of existing and proposed programs to improve nursing
practices and strengthen the nursing workforce. The support of research
and evaluation studies that test models of nursing practice and
workforce development is integral to advancing health care for all in
America. Investments in research and evaluation studies have a direct
effect on the caliber of nursing care. Our collective goal of improving
the quality of patient care, reducing costs, and efficiently delivering
appropriate health care to those in need is served best by aggressive
nursing research and performance and impact evaluation at the program
level.
The Nursing Supply Impacts the Nation's Health and Economic Safety
The demand for primary care services in the U.S. is expected to
increase over the next few years, particularly with the aging and
growth of the population. One study projects that by the year 2019, the
demand for primary care in the United States will increase by between
15 million and 25 million visits per year. HRSA estimates that more
than 35.2 million people living within the 5,870 Health Professional
Shortage Areas nationwide do not currently receive adequate primary
care services. Research suggests that nurses and other health
professionals are trained to and already do deliver many primary care
services and may therefore be able to help increase access to primary
care, particularly in underserved areas.
ANSR applauds the subcommittee's bipartisan efforts to recognize
that a strong nursing workforce is essential to a health policy that
provides high-value care for every dollar invested in capacity building
for a 21st century nurse workforce. For nearly 50 years, the Title VIII
Nursing Workforce Development Programs have responded to the Nation's
evolving workforce needs by providing education and training
opportunities to nurses. These programs are the only Federal programs
focused on filling gaps in the supply of nurses not met by traditional
market forces, as well as producing a workforce prepared to care for
the Nation's increasingly diverse and aging population. Numerous
studies have demonstrated that the Title VIII programs graduate more
minority and disadvantaged students more likely to serve in community
health centers as well as rural and underserved areas. In a difficult
economy, the Title VIII Nursing Workforce Education Programs help
schools offer scholarships and affordable loans to nursing students,
making such educational opportunities available to aspiring nurses of
all backgrounds. By guiding job seekers to high-demand nursing jobs,
the programs fulfill both their individual career goals and a
community's health needs.
Summary
HRSA's Title VIII Nursing Workforce Education programs contribute
to a sufficient nursing workforce to meet the demands of a highly
diverse and aging population is an essential component to improving the
health status of the Nation and reducing health care costs. While the
ANSR Alliance understands the immense fiscal pressures facing the
Nation, we respectfully urge support for $251 million in funding for
Nursing Workforce Development Programs under Title VIII of the Public
Health Service Act at HRSA and $20 million for the Nurse Managed Health
Clinics under Title III of the Public Health Service Act in fiscal year
2013. We look forward to working with the subcommittee to prioritize
the Title VIII programs in fiscal year 2014 and the future.
LIST OF ANSR MEMBER ORGANIZATIONS
Academy of Medical-Surgical Nurses
American Academy of Ambulatory Care Nursing
American Academy of Nurse Practitioners
American Academy of Nursing
American Association of Nurse Anesthetists
American Association of Nurse Assessment Coordination
American Association of Occupational Health Nurses
American College of Nurse-Midwives
American Organization of Nurse Executives
American Psychiatric Nurses Association
American Society for Pain Management Nursing
American Society of PeriAnesthesia Nurses
American Society of Plastic Surgical Nurses
Association for Radiologic & Imaging Nursing
Association of Pediatric Hematology/Oncology Nurses
Association of State and Territorial Directors of Nursing
Association of Women's Health, Obstetric & Neonatal Nurses
Citizen Advocacy Center
Dermatology Nurses' Association
Developmental Disabilities Nurses Association
Emergency Nurses Association
Infusion Nurses Society
International Association of Forensic Nurses
International Nurses Society on Addictions
International Society of Nurses in Genetics, Inc.
Legislative Coalition of Virginia Nurses
National Association of Clinical Nurse Specialists
National Association of Hispanic Nurses
National Association of Neonatal Nurses
National Association of Neonatal Nurse Practitioners
National Association of Nurse Massage Therapists
National Association of Nurse Practitioners in Women's Health
National Association of Orthopedic Nurses
National Association of Registered Nurse First Assistants
National Association of School Nurses
National Black Nurses Association
National Council of State Boards of Nursing
National Council of Women's Organizations
National Gerontological Nursing Association
National League for Nursing
National Nursing Centers Consortium
National Nursing Staff Development Organization
National Organization for Associate Degree Nursing
National Student Nurses' Association, Inc.
Nurses Organization of Veterans Affairs
Pediatric Endocrinology Nursing Society
Preventive Cardiovascular Nurses Association
RN First Assistants Policy & Advocacy Coalition
Society of Gastroenterology Nurses and Associates, Inc.
Society of Pediatric Nurses
Society of Trauma Nurses
Women's Research & Education Institute
Wound, Ostomy and Continence Nurses Society
______
Prepared Statement of the Arthritis Foundation
SUMMARY REQUEST
------------------------------------------------------------------------
------------------------------------------------------------------------
National Institutes of Health overall funding......... $32,000,000,000
NIH: National Institute of Arthritis and 525,000,000
Musculoskeletal and Skin Diseases (NIAMS)........
Health Resources and Services Administration
Pediatric Subspecialty Loan Repayment Program..... 5,000,000
Centers for Disease Control
CDC Arthritis Program............................. 15,000,000
------------------------------------------------------------------------
The Arthritis Foundation is committed to raising awareness and
reducing the unacceptable impact of arthritis, which strikes one in
every five adults and 300,000 children, and is the Nation's leading
cause of disability. The Arthritis Foundation would like to provide
recommendations for the Labor Health and Human Services (Labor HHS)
Budget for fiscal year 2014.
Specifically, we would like to comment on three specific agencies
of jurisdiction of the Labor HHS Appropriations Subcommittee: the
National Institutes of Health (NIH) and in particular the National
Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS),
the Health Services Resources Administration (HRSA) and the Centers for
Disease Control (CDC).
ARTHRITIS RELATED RESEARCH INVESTMENTS AT THE NATIONAL INSTITUTES OF
HEALTH (NIH): FUNDING FOR THE NATIONAL INSTTUTE OF ARTHRITIS AND
MUSCULOSKELETAL AND SKIN DISEASES (NIAMS)
Research holds the key to preventing, controlling, and curing
arthritis, the Nation's leading cause of disability. The prevalence,
impact and disabling pain continues to increase. 50 million Americans--
one in five adults--have arthritis now. Within 20 years, the Centers
for Disease Control and Prevention (CDC) estimates that 67 million
adults or 25 percent of the population will have arthritis. Arthritis
limits the daily activities of 21 million Americans and accounts for
$128 billion annually in economic costs. The National Institute of
Arthritis and Musculoskeletal and Skin Diseases (NIAMS) supports
research into the causes, treatment, and prevention of arthritis and
musculoskeletal and skin diseases. The critical research done at NIAMS
improves the quality of life for people with arthritis and decreases
the overall burden of the disease. NIH funding should be allocated $32
billion for fiscal year 2014 and NIAMS should be funded at $559 million
to fund critical research on arthritis and other related diseases at
the Institute. Our NIH recommendations reflect , the minimum needed to
sustain the current level of research and account for inflation.
HRSA PEDIATRIC SUBSPECIALITY LOAN REPAYMENT PROGRAM
Juvenile arthritis is one of the most common childhood diseases,
affecting more children than cystic fibrosis and muscular dystrophy.
Currently, there are less than 250 board-certified practicing pediatric
rheumatologists in the United States and about 90 percent of those are
clustered in and around large cities. Pediatric rheumatology has one of
the smallest numbers of doctors of any pediatric subspecialty. Of those
children with juvenile arthritis, only one-fourth see a pediatric
rheumatologist due to their scarcity. The other 75 percent of juvenile
arthritis patients see either pediatricians (who tend not to be trained
in how to care for juvenile arthritis) or adult rheumatologists, who
aren't trained to deal with pediatric issues. Issues such as whether
it's the stunted bone growth that can result from arthritis and its
treatment, or the unwillingness of an adolescent to take his medicine.
There are currently eleven States that do not have a single practicing,
board-certified pediatric rheumatologist and seven States with only one
practicing board-certified pediatric rheumatologist.
The Pediatric Subspecialty Loan Repayment Program was authorized by
Section 5203 of the Affordable Care Act (ACA) in March 2010. The
program would incentivize training and practice in pediatric medical
subspecialties, like pediatric rheumatology, in underserved areas
across the United States. The program would offer up to $35,000 in loan
forgiveness for each year of service for a maximum of 3 years. The
program was authorized for $30 million for fiscal year 2010 through
fiscal year 2014, but has yet to be appropriated any funding. President
Obama's fiscal year 2014 budget requests $5 million to fund the
Pediatric Subspecialty Loan Repayment Program. The Arthritis Foundation
urges Congress to allocate $5 million dollars to fund the Pediatric
Subspecialty Loan Repayment Program.
CENTER FOR DISEASE CONTROL: CDC ARTHRITS PROGRAM
The goal of the CDC Arthritis Program is to improve the quality of
life for people affected by arthritis and other rheumatic conditions by
working with States and other partners to (1) increase awareness about
appropriate arthritis self-management activities, (2) expanding the
reach of programs proven to improve the quality of life for people with
arthritis and (3) decrease the overall burden of arthritis as well as
its associated disability, work and activity limitations.
The Arthritis Foundation requests that Congress provide a slight
increase ($2 million) to expand the CDC Arthritis Program to $15
million for fiscal year 2014. These additional funds would allow the
Program to expand to two additional States. These State-based programs
would (1) increase evidence based interventions, such as the Arthritis
Foundation's Walk with Ease Program (WWE), into more communities; (2)
reach diverse populations by funding partnership activities; and (3)
support the OA Action Alliance, a coalition committed to elevating OA
as a national priority. www.oaactionalliance.org.
The Arthritis Foundation appreciates the opportunity to provide
recommendations to the Senate Labor Health and Human Services Committee
on recommendations for fiscal year 2014.
If you have questions about these comments, please don't hesitate
to contact the Arthritis Foundation. Questions about HRSA request--Kim
Beer, Director, Advocacy, [email protected] or Maria Spencer,
Director, Federal Affairs for NIH/CDC, [email protected].
______
Prepared Statement of the Association for Research in Vision and
Ophthalmology (ARVO)
EXECUTIVE SUMMARY
ARVO is a community of more than 12,750 vision and ophthalmology
researchers from 80 countries; we are the largest, most respected eye
and vision research organization in the world. Our aim is to help cure
and prevent blindness by encouraging and assisting research, training,
publication and knowledge-sharing. In that regard, ARVO is pleased to
make the following request regarding fiscal year 2014 appropriations:
Congress fund the National Institutes of Health (NIH) at $32
billion, which reflects a $1.38 billion, or 4.5 percent increase, over
fiscal year 2012, which consists of biomedical inflation of 2.8 percent
plus modest growth.
--This recommendation reflects the minimum investment necessary to
make up for the 20 percent loss in purchasing power over the
last decade, as well as the impact of the sequester, which cut
5.1 percent or $1.6 billion from NIH's $30.8 billion budget.
--NIH funding, especially in basic research, plays an essential role
that the private sector could not duplicate.
Congress fund the National Eye Institute (NEI) at $730 million
within the overall NIH funding increase. The President's budget
proposes an fiscal year 2014 NEI funding cut of $2.1 million to a level
$699 million, which is unacceptable because:
--It cuts 35 competing grants. The $36 million cut in fiscal year
2013 NEI funding due to the sequester has already translated
into a loss of an estimated 90 grants--any one of which holds
the promise to save or restore vision.
--The cut jeopardizes NEI's ability to fund new and compelling
scientific ideas to advance research, which were identified
through its Audacious Goals Initiative.
In fiscal year 2012 and fiscal year 2013 funding, with the latter
including the sequester, the vision research community has experienced
the ``perfect storm''--cuts to new grants, no inflationary increases to
existing grants, which may also be cut, and the reduction of the salary
cap from Executive Level (EL) I to EL II--which, in totality, threaten
the development of the next generation of vision scientists and the
United States' leadership in vision research. Every researcher within
our community has been impacted--seasoned researchers, new and young
investigators, students-in-training, and clinician scientists--and each
institution has been affected in terms of its ability to retain and
attract trained personnel and to balance Federal funding cuts with
bridge or philanthropic funding in an effort to maintain the momentum
of past research.
As a result, ARVO asks Congress to carefully consider every aspect
of fiscal year 2014 NIH and NEI appropriations--the funding level, the
impact on new and existing grants, and the salary cap, the past
reduction of which to EL II has disproportionately affected clinician-
scientists who are critical to the translation of basic science. ARVO
also asks Congress to fully consider the consequences for the current
and future generation of scientists who are not only helping to
understand the basis of disease, but developing treatments and
therapies to save and restore vision as well as improve lives .
ARVO REQUESTS THAT CONGRESS IMPROVE UPON THE PRESIDENT'S FISCAL YEAR
2014 REQUEST, WHICH CUTS NEI FUNDING AND THREATENS RESEARCH
Despite the President's request increasing NIH funding by $471
million, or 1.5 percent, over the fiscal year 2012 level of $30.6
billion (net of transfers), it proposes to cut NEI by $2.1 million, or
0.3 percent, below its fiscal year 2012 level of $701.3 million (net of
transfers). Although the cut is primarily driven by an $8.9 million
reduction due to the conclusion of the NEI-sponsored Ocular
Complications of AIDS (SOCA) studies, which are funded by the NIH
Office of AIDS Research, it is still a cut and drives NEI funding in
the wrong direction. The President's proposed fiscal year 2014 NEI
funding level of $699 million falls $8 million below the base fiscal
year 2010 level of $707 million, the highest NEI funding level ever
prior to the addition of American Recovery and Reinvestment Act (ARRA)
funding.
Most importantly, the President's proposed fiscal year 2014 NEI cut
of $2.1 million comes after the fiscal year 2013 sequester cut of $36
million. The President's fiscal year 2014 budget would cut 35 competing
grants from NEI funding, which follows a $36 million reduction in NEI
funding due to the sequester in fiscal year 2013 that has already
translated into a loss of an estimated 90 grants--any one of which
holds the promise of sight.
The very health of the vision research community is at stake with a
decrease in NEI funding. Not only will funding for new investigators
and those in training be at risk, but also that of seasoned
investigators, which threatens the continuity of research and the
retention of trained staff, while making institutions more reliant on
bridge and philanthropic funding. If an institution needs to let staff
go, that could result in a highly-trained person leaving research
altogether or moving to an institution in another country.
This threatens the United States' leadership in vision research.
Despite efforts in many ARVO members' home countries to increase
medical and vision research funding, especially in China and India,
they readily acknowledge that NEI-funded research still leads the
world's efforts to save and restore vision. Since many of these members
have also received their training in the U.S., they also value the
importance of ongoing collaborations with U.S.-based investigators.
NEI's leadership is essential to a global synergy that is resulting in
the breakthroughs in vision research.
ARVO also requests NEI funding at $730 million since our Nation's
investment in vision health is an investment in overall health. NEI's
breakthrough research is a cost-effective investment, since it is
leading to treatments and therapies that can ultimately delay, save,
and prevent health expenditures, especially those associated with the
Medicare and Medicaid programs. It can also increase productivity, help
individuals to maintain their independence, and generally improve the
quality of life, especially since vision loss is associated with
increased depression and accelerated mortality.
arvo requests fiscal year 2014 nei funding at $730 million to enable it
TO BUILD UPON ITS PAST RECORD OF BASIC AND TRANSLATIONAL RESEARCH AND
PURSUE THE MOST AUDACIOUS GOALS IN VISION RESEARCH
The NEI is in the middle of a novel planning initiative to identify
long-term, ten-year goals in vision research. Under the auspices of the
National Advisory Eye Council, this expansion of NEI program planning
is designed to engage and energize the vision research community and
help the NEI establish the most compelling research priorities by
identifying one or more ``audacious goals.'' Most recently, NEI hosted
200 representatives from every sector of the vision community, as well
as Government scientists and regulators from various disciplines at the
NEI's Audacious Goals Development meeting. NIH Director Francis
Collins, M.D., Ph.D. was very enthusiastic about this initiative and
urged the attendees to have a ``bold vision for vision'' by describing
NEI's long tradition of leadership in the biomedical research arena,
including:
--identifying more than 500 genes associated with vision loss, which
is one-quarter of all genes discovered to date; and
--funding the successful human gene therapy trial for patients with
Leber Congenital Amaurosis, in which treated patients have
experienced vision improvement.
The meeting's discussion topics were built around the 10 winning
submissions from a pool of nearly 500 entries selected through NEI's
Audacious Goals in Vision Research and Blindness Rehabilitation
Challenge, a competition for bold and novel ideas to dramatically
advance vision science. These ideas included restoring light
sensitivity to the blind through gene-based therapies and visual
prosthetics, pinpoint correction of defective genes, and growing
healthy tissue from stem cells for ocular tissue transplants.
Translating these and other research ideas into safe and effective
treatments to save and restore vision requires adequate funding.
NEI has always envisioned the future. Just a few short years ago,
the ``bionic eye'' was just a fantasy. However, In February 2013, the
Food and Drug Administration (FDA) approved an implanted retinal
prosthesis to treat adult patients with advanced retinitis pigmentosa
(RP), a rare genetic condition that damages the retina and leads to
blindness. In this device, developed in part with NEI funding, a small
video camera mounted on a pair of glasses sends images to a video
processing unit that converts them to electronic data that is
wirelessly transmitted to an array of electrodes implanted onto the
retina. The device is enabling those who are otherwise completely blind
to identify doors, crosswalks, and even utensils on a table. Funding
must be adequate for NEI to successfully pursue its goal of saving and
restoring vision.
BLINDNESS AND VISION LOSS IS A GROWING PUBLIC HEALTH PROBLEM THAT
INDIVIDUALS FEAR AND WOULD TRADE YEARS OF LIFE TO AVOID
NEI is already facing enormous challenges this decade: each day,
from 2011 to 2029, 10,000 citizens will turn 65 and be at greatest risk
for eye disease; the fast growing African American and Hispanic
populations will experience a disproportionately higher incidence of
eye disease; and the epidemic of obesity will significantly increase
the incidence of diabetic retinopathy.
The NEI estimates that more than 38 million Americans age 40 and
older experience blindness, low vision, or an age-related eye disease
such as age-related macular degeneration (AMD), glaucoma, diabetic
retinopathy, or cataracts. This is expected to grow to more than 50
million Americans by the year 2020. Although NEI estimates that the
current annual cost of vision impairment and eye disease to the U.S. is
$68 billion, this number does not fully quantify the impact of indirect
healthcare costs, lost productivity, reduced independence, diminished
quality of life, increased depression, and accelerated mortality. NEI's
proposed fiscal year 2014 funding of $699 million reflects just a
little more than 1 percent of this annual costs of eye disease. The
continuum of vision loss presents a major public health problem, as
well as a significant financial challenge to the public and private
sectors.
Vision loss also presents a real fear to most citizens. In public
opinion polls over the past 40 years, Americans have consistently
identified fear of vision loss as second only to fear of cancer. NEI's
Survey of Public Knowledge, Attitudes, and Practices Related to Eye
Health and Disease reported that 71 percent of respondents indicated
that a loss of their eyesight would rate as a ``10'' on a scale of 1 to
10, meaning that it would have the greatest impact on their day-to-day
life. In patients with diabetes, going blind or experiencing vision
loss rank among the top four concerns about the disease. These patients
are so concerned about vision loss diminishing their quality of life
that those with nearly perfect vision (20/20 to 20/25) would be willing
to trade 15 percent of their remaining life for ``perfect vision,''
while those with moderate impairment (20/30 to 20/100) would be willing
to trade 22 percent of their remaining life for perfect vision.
Patients who are legally blind from diabetes (20/200 to 20/400) would
be willing to trade 36 percent of their remaining life to regain
perfect vision.
ARVO urges Congress to fund NIH at $32 billion and NEI at $730
million, in fiscal year 2014 to ensure the momentum of research, to
retain trained personnel, and maintain U.S. leadership.
______
Prepared Statement of the Association for Professionals in Infection
Control and Epidemiology and the Society for Healthcare Epidemiology of
America
The Association for Professionals in Infection Control and
Epidemiology (APIC) and the Society for Healthcare Epidemiology of
America (SHEA) thank you for this opportunity to submit testimony on
Federal efforts to detect dangerous infectious diseases and protect the
American public from healthcare-associated infections (HAIs). We ask
that the subcommittee support the following programs under
appropriations for the Department of Health and Human Services.
First, under the Centers for Disease Control and Prevention
National Center for Emerging and Zoonotic Infectious Diseases: $31.5
million for the National Healthcare Safety Network (NHSN) and the
Prevention Epicenters Program; $40 million for the Advanced Molecular
Detection and Response to Infectious Disease Outbreaks Program; and
$226.7 million for Core Infectious Diseases to include funding for
Healthcare-Associated Infections, Antimicrobial Resistance, and the
Emerging Infections Program (EIP). Additionally, we request $34 million
for the Agency for Healthcare Research and Quality (AHRQ) to reduce and
prevent HAIs. This includes $12.6 million in HAI research grants and
$21.4 million in HAI contracts including the Comprehensive Unit-based
Safety Program (CUSP). These CDC requests include the agency's
recommendations related to the Working Capital Fund. Finally, we
request $500 million annually for the National Institutes of Health
(NIH), National Institute of Allergy and Infectious Diseases'
antibacterial and related diagnostics efforts by the end of fiscal year
2014.
HAIs are among the leading causes of preventable death in the
United States. In hospitals alone, CDC estimates that one in 20
hospitalized patients has an HAI, while over one million HAIs occur
across healthcare settings annually.
In addition to the substantial human suffering, HAIs contribute $28
to $33 billion in excess healthcare costs each year. Fortunately
several HAIs are on the decline as a result of recent advances in the
understanding of how to prevent certain infections. In particular,
bloodstream infections associated with indwelling central venous
catheters, or ``central lines,'' are largely preventable when
healthcare providers use the CDC infection prevention recommendations
in the context of a performance improvement collaborative. CDC recently
reported a 41 percent reduction in central line-associated bloodstream
infections in 2011. The reduction in central line associated
bloodstream infections over the last 4 years has saved 5,000 lives and
averted an estimated $83 million in healthcare costs. Now we have the
opportunity to continue this momentum and extend it to other
infections.
CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC)
APIC and SHEA request $31.5 million for the National Healthcare
Safety Network (NHSN) and the Prevention Epicenters Program. These
programs provide critical funding to detect dangerous multidrug-
resistant organisms (MDROs) in order to protect patients and the public
from disease and death associated with HAIs.
APIC and SHEA are strongly supportive of the Prevention Epicenters
Program, a collaboration of CDC's Division of Healthcare Quality
Promotion (DHQP) and academic medical centers that conduct innovative
infection control and prevention research to address important
scientific gaps regarding the prevention of HAIs, antibiotic resistance
and other adverse healthcare events.
Consistent, high quality, scientifically sound and validated data
are necessary to measure the true extent of the problem, develop
evidence-based HAI prevention strategies, and to ensure that accurate
data are available at the State and Federal level for public reporting.
Funding for this program has been flat since fiscal year 2010,
despite the system's importance in our Nation's efforts to monitor and
prevent HAIs, and the increase in facilities reporting into the NHSN--
from 3,000 in 2010 to nearly 12,000 in 2013.
APIC and SHEA request $226.7 million for Core Infectious Diseases
to include funding for Healthcare-Associated Infections, Antimicrobial
Resistance, and Emerging Infections Program.
APIC and SHEA support the EIP as it helps States, localities and
territories in detecting and protecting the public from known
infectious disease threats in their communities while maintaining our
Nation's capacity to identify new threats as they emerge.
Further, ensuring the effectiveness of antibiotics well into the
future is vital for the Nation's public health, particularly when our
current therapeutic options are now dwindling and research and
development of new antibiotics is lagging. As noted in the recently
released CDC Vital Signs report related to carbapenem-resistant
Enterobacteriaceae (CRE), microorganisms are becoming more resistant to
antimicrobials. Such resistance is one of the most pressing challenges
facing healthcare providers and patients in the coming decade, so it is
essential that the CDC maintain the ability to monitor organism
resistance.
APIC and SHEA request $40 million for the Advanced Molecular
Detection and Response to Infectious Disease Outbreaks Program (AMD).
This program will improve urgently needed molecular and bioinformatics
capacities for controlling infectious disease threats at the national
and State level.
Modernizing public health microbiology capacities through the AMD
program will ensure CDC is able to meet its basic public health mission
by keeping pace with major technologic advances in the diagnosis and
characterization of infectious agents and reducing the burden of
infectious diseases. AMD will allow for the efficient determination of
the origin of emerging diseases, whether microorganisms are resistant
to antimicrobials, and how microorganisms maneuver and alter through a
population.
AGENCY FOR HEALTHCARE RESEARCH AND QUALITY (AHRQ)
APIC and SHEA request $34 million for AHRQ in fiscal year 2014 to
reduce and prevent HAIs. This total includes funding for HAI research
grants to improve the prevention and management of HAIs, and HAI
contracts including nationwide implementation of the Comprehensive
Unit-based Safety Program (CUSP). Over the past decade, AHRQ has funded
numerous projects targeting HAI prevention that have led to the
successful reduction of central line-associated bloodstream infections
(CLABSIs) in hospital intensive care units (ICUs) by 58 percent since
2001, representing up to 27,000 lives saved. In spite of this notable
progress, there is a great deal of work to be done toward the goal of
HAI elimination. SHEA and APIC are very pleased that AHRQ is expanding
the CUSP program to reach healthcare settings outside the ICU and to
broaden the focus to address other types of infection.
national institutes of health (nih), national institute of allergy and
INFECTIOUS DISEASES (NIAID)
APIC and SHEA request that at least $500 million annually be
provided for NIAID's antibacterial and related diagnostics efforts by
the end of fiscal year 2014. As part of this effort, we believe NIAID
should invest at least $100 million per year in the antibiotic
resistance-focused clinical trials network that the Institute is
currently establishing and should be operational by 2014. Although we
applaud NIAID for establishing this new network, we believe the planned
investment of $10 million per year over the next 10 years will be
insufficient to undertake the critical studies needed to address what
are quickly becoming untreatable infections. We thank you for the
opportunity to submit testimony and greatly appreciate this
subcommittee's assistance in providing the necessary funding for the
Federal Government to have a leadership role in the effort to eliminate
HAIs.
About APIC.--APIC's mission is dedicated to creating a safer world
through prevention of infection. The association's more than 14,000
members direct and maintain infection prevention programs that prevent
suffering, save lives and contribute to cost savings for hospitals and
other healthcare facilities. APIC advances its mission through patient
safety, implementation science, competencies and certification,
advocacy, and data standardization.
About SHEA.--Founded in 1980, SHEA works to achieve the highest
quality of patient care and healthcare personnel safety in all
healthcare settings by applying epidemiologic principles and prevention
strategies to a wide range of quality-of-care issues. SHEA's membership
of 2,000 represents all branches of medicine, public health, and
healthcare epidemiology. SHEA members are committed to implementing
evidence-based strategies to prevent HAIs and improve patient safety,
and have scientific expertise in evaluating potential strategies to
accomplish this goal.
______
Prepared Statement of the Association of American Cancer Institutes
The Association of American Cancer Institutes (AACI), representing
95 of the Nation's premier academic and free-standing cancer centers,
appreciates the opportunity to submit this statement for consideration
by the United States Senate's Subcommittee on Labor, Health and Human
Services, Education and Related Agencies, Committee on Appropriations.
AACI thanks the President, Congress and the subcommittee for its
long-standing commitment to ensuring quality care for cancer patients,
as well as for providing researchers with the resources that they need
to develop better cancer treatments and, ultimately, to cure this
disease.
The President's fiscal year 2014 budget requests $31.3 billion for
the National Institutes of Health (NIH), an increase of $471 million
(1.5 percent) over the fiscal year 2012 level. This amount includes
$5.125 billion for the National Cancer Institute (NCI), a $63 million
increase over fiscal year 2012 (1.2 percent). However, the President's
budget request does not account for the cuts due to sequestration.
Unless Congress acts to replace the sequester, the automatic spending
cuts will reduce the NIH and NCI budgets further through 2021.
AACI joins with our colleagues in the biomedical research community
in recommending that the subcommittee recognize NIH as a critical
national priority by providing at least $32 billion in funding in the
fiscal year 2014 Labor-HHS-Education Appropriations bill, including an
equivalent percentage increase in funding for NCI. This funding level
represents the minimum investment necessary to avoid further loss of
promising research.
AACI cancer centers are at the front line in the national effort to
eradicate cancer. The cancer centers that AACI represents house more
than 20,000 scientific, clinical and public health investigators who
work collaboratively to translate promising research findings into new
approaches to prevent and treat cancer. Making progress against cancer
is complex as it takes a significant amount of time to discovery new
therapies and treatments for cancer patients. However, the pace of
discovery and translation of novel basic research to new therapies
could be faster if researchers could count on an appropriate and
predictable investment in Federal cancer funding. Cuts to the NIH
budget have a real impact on progress against cancer at cancer centers
across the country. Continued progress in cancer research is dependent
on the sustained efforts of highly skilled research teams working at
cancer centers across the country and supported by the NCI. Failure to
keep up with the rate of biomedical inflation diminishes many of the
research teams working on new treatments and new cures.
AACI and its members are profoundly aware of the country's fiscal
environment. The vast majority of our cancer centers exist within
universities that are absorbing severe budget reductions. Furthermore,
because of the reduced funding pool for meritorious grant applications,
many of our senior and most promising young investigators are now
without NCI funding and require significant bridge funding from private
sources. In recent years, however, it has become more challenging to
raise philanthropic and other external funds. As a result, we continue
to be highly dependent on Federal cancer center grants. The lack of
funding for promising young scientists risks driving an entire
generation of young cancer physicians and researchers either abroad, to
seek opportunities to practice their craft and advance their careers,
or out of the field altogether. These serious consequences for
biomedical jobs and local economies mean that funding cuts will
undermine U.S. competitiveness, at a time when other nations are
aggressively boosting their investments in research and development.
Impact in the Lab and Beyond
The negative effects of diminished biomedical research funding
reach beyond the lab and into local communities, as chronicled by a
number of AACI cancer center directors who were featured in newspaper
editorials or interviews that highlighted the impact of NIH and NCI
funding on people and local economies in their individual States.
For example, AACI President Michelle M. Le Beau, PhD, director of
the University of Chicago Comprehensive Cancer Center and AACI Vice-
President/President-Elect George Weiner, MD, director of the Holden
Comprehensive Cancer Center at the University of Iowa noted that at
their respective NCI-designated Comprehensive Cancer Centers alone,
sequestration has begun to undermine innovative work being done to
harness a patient's own immune system to fight cancer, genomic
profiling of patients' cancers to personalize treatment, and the
evaluation of more sensitive imaging technology for early detection of
cancer.
Nancy E. Davidson, MD, director of the University of Pittsburgh
Cancer Institute, told a local newspaper that she has serious concerns
about the cuts, which she said would affect the institute's work. She
noted that budget cuts would force her to eliminate jobs, shut
laboratories and halt promising experiments. She stated that she would
not be able to hire faculty members and faces the possibility of
shutting down programs.
Roy A. Jensen, MD, director of the University of Kansas Cancer
Center said, ``It's really come on top of a fairly extended period of
flat funding, which has eroded the purchasing power of biomedical
dollars. . . It's almost like the final push over the edge. I know a
lot of labs are having to lay people off and not pursuing promising
scientific leads.''
Edward J. Benz, Jr., MD, director of the Dana-Farber Cancer
Institute, affiliated with Harvard Medical School, stated, ``The cuts
in Federal funding as they're being put into play are unraveling one of
the greatest biomedical-research enterprises in the history of the
world. . . These kinds of draconian, across-the-board cuts are really
cutting into the meat of what we do.''
Ralph de Vere White, MD, director of the UC Davis Comprehensive
Cancer Center and associate dean for cancer programs at the UC Davis
School of Medicine, wrote in an opinion piece that, ``Deterioration of
the (funding) pipeline comes at a critical time. Although death rates
from most types of cancer have fallen because we are finding and
treating tumors earlier, advanced cancers have proved much more
challenging. This Nation's investment in cancer research has allowed us
to develop the tools to drastically cut that death rate. These tools
are not simply costly new drugs. They are methods to interrogate tumors
at the molecular level. They are tests to identify a tumor's genetic
characteristics so we can choose appropriate treatments on a patient-
by-patient basis so we can spare patients therapies that cause side
effects but offer no benefit.''
Donald L. Trump, MD, President and CEO of Roswell Park Cancer
Institute, in Buffalo, informed his colleagues that proposals within
the institute, specifically a proposal for a study on the role specific
genes play in metastasis of prostate cancer, the second leading cause
of cancer death in American men, will suffer due to budget constraints.
Roswell Park anticipated cutting three researchers from this effort--a
33 percent workforce reduction.
Walter J. Curran, Jr., MD, FACR, executive director of Winship
Cancer Institute of Emory University, in Atlanta, testified on behalf
of AACI before the Committee on Appropriations Subcommittee on Labor,
Health and Human Services, Education and Related Agencies. He noted
that Winship has an outstanding research team making real progress
understanding how to target newly discovered mutations causing lung
cancer, the type of cancer causing the most deaths in our country.
Winship has observed an increase in the number of lung cancer patients
who have little or no tobacco use history, and are just beginning to
understand the genetic and genomic risk factors of such individuals for
developing lung cancer, he said. Dr. Curran was adamant that any cut in
funding support of this and other projects could delay finding new and
effective therapies for thousands of patients by years.
Recent studies have also concluded that Federal support for medical
research is a major determinant in the economic health of communities
across the country. In one report, United for Medical Research, a
coalition of leading research institutions, patient and health
advocates and private industry, estimated that NIH funding generated
the greatest number of jobs in California (59,363), Massachusetts
(34,031), New York (32,249), Texas (25,408) and North Carolina (18,779)
and also supported more than 10,000 jobs each in Pennsylvania,
Maryland, Washington, Illinois, Ohio, Florida, Michigan and Georgia.
Fifty-five AACI cancer centers are located in those 13 States.
Cancer centers are already challenged to provide infrastructure
resources necessary to support funded researchers, and cuts in Federal
cancer center grants will limit our members' ability to provide well-
functioning shared resources to investigators who depend on them to
complete their research. For most academic cancer centers, the majority
of NCI grant funds are used to sustain shared resources that are
essential to basic, translational, clinical and population cancer
research, or to provide matching dollars which allow departments to
recruit new cancer researchers to a university and support them until
they receive their first grants.
Independent investigator research is a particularly valuable
resource, especially in genomics and molecular epidemiology. Such
research depends on state-of-the-art shared resources like tissue
processing and banking, DNA sequencing, microRNA platforms, proteomics,
biostatistics and biomedical informatics. This infrastructure is
expensive and it is not clear where cancer centers would acquire
alternative funding if NCI grants for these efforts were reduced.
Cancer Research is Improving America's Health
The broad portfolio of research supported by NIH and NCI is
essential for improving our basic understanding of diseases and it has
paid off considerably in terms of improving Americans' health.
The 5-year relative survival rate for all cancers diagnosed between
2002 and 2008 is 68 percent, up from 49 percent in 1975-1977. The
improvement in survival reflects both progress in diagnosing certain
cancers at an earlier stage and improvements in treatment. Data has
shown specifically that cancer death rates have dropped 11.4 percent
among women and 19.2 percent among men over the past 15 years, due in
large part to better detection and more effective treatments.\1\
Despite that success, cancer remains the second leading cause of
death in the U.S., with almost 1,600 deaths per day. More than 1.6
million Americans are expected to be diagnosed with cancer in 2013,
with an expected 580,350 people to die from the disease.\2\ NCI
estimates that 41 percent of individuals born today will receive a
cancer diagnosis at some point in their lifetime.\3\
The network of cancer centers represented by AACI continues the
fight against cancer by conducting the highest-quality cancer research
in the world and provides exceptional patient care. In 2012, 86 percent
of NCI's total budget was awarded extramurally to research
institutions, including the AACI's member cancer centers.\4\ Because
these centers are networked nationally, opportunities for
collaborations are many--assuring wise and non-duplicative investment
of scarce Federal dollars.
Conclusion
NIH estimates that the overall costs of cancer in 2008 were $201.5
billion: $77.4 billion for direct medical costs (total of all health
expenditures) and $124.0 billion for indirect mortality costs (cost of
lost productivity due to premature death).\5\ The cost of cancer
continues to rise, but the investment in cancer research will one day
eliminate such economic burdens on Americans and the cancer center
researchers who work tirelessly to find a cure for this deadly disease.
In the face of that economic burden, the Nation's financial support
of NIH and NCI has paid dividends by introducing innovative therapies
for cancers that years ago robbed countless Americans of their future.
NIH's full support of NCI-designated centers and their programs remains
a top priority for our Nation's cancer centers. We are on a clear path
to dramatic breakthroughs at cancer centers across the country. It is
through the power of collaborative innovation that we will continue to
move toward a future without cancer, and Federal research funding is
essential to achieving our goals.
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\1\ American Cancer Society. Facts and Figures, 2013. http://
www.cancer.org/acs/groups/content/@epidemiologysurveilance/documents/
document/acspc-036845.pdf.
\2\ American Cancer Society. Facts and Figures, 2013.
\3\ Cancer Trends Progress Report--2011/2012 Update, National
Cancer Institute, NIH, DHHS, Bethesda, MD, August 2012, http://
progressreport.cancer.gov.
\4\ U.S. Department of Health and Human Services, National
Institutes of Health, National Cancer Institute 2012 Fact Book.
\5\ American Cancer Society. Facts and Figures 2013. Please note:
these figures are not comparable to those published in previous years
because as of 2011, the NIH is calculating the estimates using a
different data source: the Medical Expenditure Panel Survey (MEPS) of
the Agency for Healthcare Research and Quality. The MEPS estimates are
based on more current, nationally representative data and are used
extensively in scientific publications. As a result, direct and
indirect costs will no longer be projected to the current year, and
estimates of indirect morbidity costs have been discontinued. For more
information, please visit nhlbi.nih.gov/about/factpdf.htm.
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______
Prepared Statement of the Association of American Medical Colleges
The Association of American Medical Colleges (AAMC) is a not-for-
profit association representing all 141 accredited U.S. and 17
accredited Canadian medical schools; nearly 400 major teaching
hospitals and health systems; and nearly 90 academic and scientific
societies. Through these institutions and organizations, the AAMC
represents 128,000 faculty members, 75,000 medical students, and
110,000 resident physicians. The association wishes to address four
Federal priorities that play essential roles in assisting medical
schools and teaching hospitals to fulfill their missions of education,
research, and patient care: the National Institutes of Health (NIH);
the Agency for Healthcare Research and Quality (AHRQ); health
professions education funding through the Health Resources and Services
Administration (HRSA)'s Bureau of Health Professions; and student aid
through the Department of Education and HRSA's National Health Service
Corps. The AAMC appreciates the subcommittee's longstanding, bipartisan
efforts to strengthen these programs.
National Institutes of Health.--The NIH is one of the Federal
Government's greatest achievements. Congress's long-standing bipartisan
support for medical research through the NIH has created a scientific
enterprise that is the envy of the world and has contributed greatly to
improving the health and well-being of all Americans. The foundation of
scientific knowledge built through NIH-funded research drives medical
innovation that improves health through new and better diagnostics,
improved prevention strategies, and more effective treatments.
Eighty-four percent of NIH research funding is awarded to more than
2,500 research institutions in every State; at least half of this
funding supports life-saving research at America's medical schools and
teaching hospitals. This successful partnership not only lays the
foundation for improved health and quality of life, but also
strengthens the Nation's long-term economy.
The AAMC supports the recommendation of the Ad Hoc Group for
Medical Research to recognize NIH as an urgent national priority by
providing at least $32 billion in its fiscal year 2014 Labor-HHS-
Education Appropriations bill. Strengthening our Nation's commitment to
medical research, through robust funding of the NIH, is a critical
element in ensuring the health and well-being of the American people
and our economy.
The AAMC notes past proposals by the House subcommittee to reduce
the limit on salaries that can be drawn from NIH extramural awards to
Executive Level III of the Federal Executive Pay Scale and thanks the
Senate subcommittee for rejecting these efforts. These proposals come
at a time when medical schools' and teaching hospitals' discretionary
funds from clinical revenues and other sources have become increasingly
constrained and less available to invest in research. As institutions
and departments divert funds to compensate for the reduction in the
salary limit, they will have less funding for critical activities such
as bridge funding to investigators who may be between grants and seed
grants and start-up packages for young investigators. The lower salary
cap will disproportionately affect physician investigators, who will be
forced to make up salaries from clinical revenues, thus leaving less
time for research. This may serve as a deterrent to their recruitment
into research careers. The AAMC urges the subcommittee to retain the
limit at Executive Level II.
Agency for Healthcare Research and Quality.--Complementing the
medical research supported by NIH, AHRQ sponsors health services
research designed to improve the quality of health care by translating
research into measurable improvements in the health care system. The
AAMC firmly believes in the value of health services research as the
Nation continues to strive to provide high quality, efficient health
care to all of its citizens. The AAMC joins the Friends of AHRQ in
recommending $434 million for the agency in fiscal year 2014.
As the lead Federal agency to improve health care quality, AHRQ's
overall mission is to support research and disseminate information that
improves the delivery of health care by identifying evidence-based
medical practices and procedures. The Friends of AHRQ funding
recommendation will allow AHRQ to continue to support the full spectrum
of research portfolios at the agency, from patient safety to other
valuable research initiatives. These research findings will better
guide and enhance consumer and clinical decisionmaking, provide
improved health care services, and promote efficiency in the
organization of public and private systems of health care delivery.
Health Professions Funding.--HRSA's Title VII health professions
and Title VIII nursing education programs are the only Federal programs
designed to improve the supply, distribution, and diversity of the
Nation's health care workforce. Through loans, loan guarantees, and
scholarships to students, and grants and contracts to academic
institutions and non-profit organizations, the Title VII and Title VIII
programs fill the gaps in the supply of health professionals not met by
traditional market forces. The AAMC joins the Health Professions and
Nursing Education Coalition (HPNEC) in recommending $520 million for
these important workforce programs in fiscal year 2014.
Throughout their 50-year history, the Title VII and Title VIII
programs have helped the workforce adapt to meet the Nation's changing
health care needs. Further, the programs advance timely priorities,
such as strengthening education and training opportunities in
geriatrics and working to close the gap in access to mental and
behavioral health services. Therefore, continued support for the
programs is essential to adequately prepare the next generation of
health professionals to meet the changing needs of our Nation's
growing, aging, and increasingly diverse population.
AAMC is deeply troubled by the President's proposal to eliminate
the Title VII Area Health Education Centers (AHEC) and the Title VII
Health Careers Opportunity Program (HCOP). As described in the results
of a recent AAMC survey, eliminating HCOP will impede programs to
assist minority and disadvantaged students in becoming more competitive
applicants for health professions training programs and will undermine
the positive effects such pipeline programs have on their communities.
Similarly, eliminating AHEC will threaten access to primary care for
patients in rural and underserved settings by discontinuing support for
educational opportunities in these environments. Indeed, failing to
support the full range of health professions programs will be
counterproductive, disrupting efforts to address some of the country's
most pressing health care challenges.
In addition to funding for Title VII and Title VIII, HRSA's Bureau
of Health Professions also supports the Children's Hospitals Graduate
Medical Education (CHGME) program. This program provides critical
Federal graduate medical education support for children's hospitals to
prepare the future primary care workforce for our Nation's children and
for pediatric specialty care. At a time when the Nation faces a
critical doctor shortage, the AAMC strongly objects to the President's
fiscal year 2014 proposal to drastically reduce funding for CHGME. AAMC
encourages the subcommittee to reject the President's proposal and
fully fund the Children's Hospitals Graduate Medical Education program.
Student Aid and the National Health Service Corps (NHSC).--The AAMC
urges the committee to sustain student loan and repayment programs for
graduate and professional students at the Department of Education. The
average graduating debt of medical students is currently $170,000, and
typical repayment can range from $321,000 to $476,000. The Budget
Control Act (BCA, Public Law 112-25) adds another $10,000 to $20,000 to
total repayment as a result of eliminating graduate and professional
in-school subsidies, effective July 1, 2012.
The AAMC opposes any rescissions from the National Health Service
Corps (NHSC) Fund created under the Affordable Care Act (ACA, Public
Law 111-142 and Public Law 111-152). The steady, sustained, and certain
growth established by this mandatory funding for the NHSC has resulted
in program expansion and innovative pilots such as the Student to
Service (S2S) Loan Repayment Program that incentivizes fourth-year
medical students to practice primary care in underserved areas after
residency training. The AAMC further requests that any expansion of
NHSC eligible disciplines or specialties be accompanied by a
commensurate increase in NHSC appropriations so as to prevent a
reduction of awards to current eligible health professions.
Furthermore, the AAMC believes that such changes are best tested
through the NHSC State Loan Repayment Program (SLRP), and that funds
provided for this program should allow the States to define specialty
and geographic shortages.
Once again, the AAMC appreciates the opportunity to submit this
statement for the record and looks forward to working with the
subcommittee as it prepares its fiscal year 2014 spending bill.
______
Prepared Statement of the Association of Independent Research
Institutes
The Association of Independent Research Institutes (AIRI)
respectfully submits this written testimony for the record to the
Senate Appropriations Subcommittee on Labor, Health and Human Services,
Education and Related Agencies. AIRI appreciates the commitment the
Members of this subcommittee have made to biomedical research through
your strong support for the National Institutes of Health (NIH) and
recommends providing at least $32 billion for NIH in fiscal year 2014.
We believe this amount is the minimum level of funding needed to
accommodate the rising costs of medical research and to help mitigate
the effects of sequestration. AIRI also encourages the subcommittee to
work to stop the sequestration cuts to research funding that squander
invaluable scientific opportunities, threaten medical progress and
continued improvements in our Nation's health, and jeopardize our
economic vitality.
AIRI is a national organization of 80 independent, non-profit
research institutes that perform basic and clinical research in the
biological and behavioral sciences. AIRI institutes vary in size, with
budgets ranging from a few million to hundreds of millions of dollars.
In addition, each AIRI member institution is governed by its own
independent Board of Directors, which allows our members to focus on
discovery-based research while remaining structurally nimble and
capable of adjusting their research programs to emerging areas of
inquiry. Researchers at independent research institutes consistently
exceed the success rates of the overall NIH grantee pool, and they
receive about 10 percent of NIH's peer-reviewed, competitively-awarded
extramural grants.
The reduction of Federal funds to support research, including the 5
percent cut in NIH funding under sequestration, harms our Nation's
ability to advance scientific discoveries that improve human health,
bolster the economy, and help keep our Nation globally competitive.
Furthermore, the impact of sequestration has been compounded by ongoing
funding constraints caused by 10 years of flat NIH budgets, which have
resulted in a loss of purchasing power and affected the ability of NIH-
funded scientists to pursue promising new avenues of research.
At the same time that scientists are facing these funding
challenges, they are poised like never before to capitalize on
tremendous scientific opportunities and make paradigm-shifting
discoveries to address our Nation's most pressing public health needs.
Budget uncertainty is disruptive to training, careers, long-range
projects, and ultimately, to research progress. To ensure the
successful and efficient advancement of science, the research engine
needs predictable, sustained funding that maximizes the Nation's return
on investment.
Not only is NIH research essential to advancing health, it also
plays a key economic role in communities nationwide. Approximately 85
percent of NIH funding is spent in communities across the Nation,
creating jobs at more than 2,500 research institutes, universities,
teaching hospitals, and other institutions. NIH research also supports
long-term competitiveness for American workers, forming one of the key
foundations for U.S. industries like biotechnology, medical device and
pharmaceutical development, and more. AIRI member institutes are
especially vulnerable to reductions in the NIH budget, as they do not
have other reliable sources of revenue to make up the shortfall.
In addition to concerns over funding, AIRI member institutes oppose
legislative provisions--such as directives to reduce the salary limit
for extramural researchers--which would harm the integrity of the
research enterprise and disproportionately affect independent research
institutes. Such prescriptive policies hinder AIRI members' research
missions and their ability to recruit and retain talented researchers.
AIRI also does not support legislative language limiting the
flexibility of NIH to determine how to most effectively manage its
resources while funding the best scientific ideas.
Pursuing New Knowledge.--The NIH model for conducting biomedical
research, which involves supporting scientists at universities, medical
centers, and independent research institutes, provides an effective
approach to making fundamental discoveries in the laboratory that can
be translated into medical advances that save lives. AIRI member
institutions are private, stand-alone research centers that set their
sights on the vast frontiers of medical science. AIRI institutes are
specifically focused on pursuing knowledge around the biology and
behavior of living systems and applying that knowledge to improve human
health and reduce the burdens of illness and disability. Additionally,
AIRI member institutes have embraced technologies and research centers
to collaborate on biological research for all diseases. Using shared
resources--specifically, advanced technology platforms or ``cores,''--
as well as genomics, imaging, and other technologies, AIRI researchers
advance therapeutics development and drug discovery.
Translating Research into Treatments and Therapeutics.--As a
network of efficient, flexible independent research institutes that
have been conducting translational research for years, AIRI plays a key
role in bringing research from the bench to the bedside. The following
examples of AIRI members' translational research successes demonstrate
the value NIH funding brings to human health:
Scientists at the Fred Hutchinson Cancer Research Center (Seattle,
WA) have pioneered a method to improve the use of umbilical cord blood
for blood stem cell transplants, a technique that is bringing
transplants and cures to many of the 16,000 leukemia patients each year
who are unable to find a matching bone marrow donor. In related work,
scientists have also developed a strategy to prevent many cases of
infection with the virus known as cytomegalovirus, a leading cause of
complications and death in cord blood transplant recipients.
Starting with fundamental research on a genetic pathway that blunts
the immune response to cancer, scientists at the Lankenau Institute for
Medical Research pioneered a new type of drug therapy that destroys a
key immune barrier and greatly heightens the efficacy of radiotherapy
and chemotherapies used to treat most human cancers. On the basis of
groundbreaking proof-of-concept studies at Lankenau, similar inhibitor
programs have been started by several pharmaceutical companies. The
resulting lead compound has been rated by an NCI workshop as one of the
most promising immunotherapeutics in the field, now in Phase Ib/II
trials.
Providing Efficiency and Flexibility.--AIRI member institutes'
flexibility and research-only missions provide an environment
particularly conducive to creativity and innovation. Independent
research institutes possess a unique versatility and culture that
encourages them to share expertise, information, and equipment across
research institutions, as well as neighboring universities. These
collaborative activities help minimize bureaucracy and increase
efficiency, allowing for fruitful partnerships in a variety of
disciplines and industries. Also, unlike institutes of higher
education, AIRI member institutes focus primarily on scientific inquiry
and discovery, allowing them to respond quickly to the research needs
of the country.
Supporting Local Economies.--AIRI is unique from other biomedical
research organizations in that our membership consists of institutions
located in regions not traditionally associated with cutting-edge
research. AIRI members are located in 25 States, including many smaller
or less-populated States that do not have major academic research
institutions. In many of these regions, independent research institutes
are major employers and local economic engines, and they exemplify the
positive impact of investing in research and science.
Fostering the Next Generation Scientific Workforce.--The biomedical
research community depends upon a knowledgeable, skilled, and diverse
workforce to address current and future critical health research
questions. While the primary function of AIRI member institutions is
research, most are highly involved in training the next generation of
biomedical researchers, ensuring that a pipeline of promising
scientists is prepared to make significant and potentially
transformative discoveries in a variety of areas. AIRI supports
policies that promote the ability of the United States to maintain a
competitive edge in biomedical science. Initiatives focusing on career
development and recruitment of a diverse scientific workforce are
important to innovation in biomedical research and public health.
AIRI thanks the subcommittee for its important work dedicated to
ensuring the health of the Nation, and we appreciate this opportunity
to urge the subcommittee to provide at least $32 billion for NIH in the
fiscal year 2014 appropriations bill. AIRI looks forward to working
with Congress to support research that improves the health and quality
of life of all Americans.
______
Prepared Statement of the Association of Maternal and Child Health
Programs
The Association of Maternal and Child Health Programs (AMCHP)
requests for $640 million in funding for fiscal year 2014 for the Title
V Maternal and Child Health (MCH) Services Block Grant administered by
the Health Resources and Services Administration Maternal and Child
Health Bureau. This funding request represents a $90 million decrease
from its highest level of $730 million in fiscal year 2003. Nondefense
discretionary programs cannot continue to bear the brunt of efforts to
reduce the Federal deficit. Specifically, sequestration combined with
reductions throughout the past 10 years resulted in at least a $124
million decrease bringing funding for the Title V MCH Block Grant to
its lowest level since 1991. The Title V MCH block grant is the
foundation upon which core public health programs dedicated to
improving the lives of our families is built and we strongly urge you
to halt the erosion of funding for this critical program.
In 2011 the Title V MCH Block Grant provided support and services
to 44 million American women, infants and children, including children
with special health care needs. It has been proven a cost effective,
accountable, and flexible funding source used to address the most
critical, pressing and unique MCH needs of each State. States and
jurisdictions use the Title V MCH Block Grant to design and implement a
wide range of maternal and child health programs. Although specific
initiatives may vary among the States and jurisdictions, all of them
work with local, State, and national partners to accomplish the
following:
--Reduce infant mortality and incidence of disabling conditions among
children;
--Increase the number of children appropriately immunized against
disease ;
--Increase the number of children in low-income households who
receive assessments and follow-up diagnostic and treatment
services;
--Provide and ensure access to comprehensive perinatal care for
women; preventative and child care services; comprehensive
care, including long-term care services, for children with
special health care needs; and rehabilitation services for
blind and disabled children and
--Facilitate the development of comprehensive, family-centered,
community-based, culturally competent, coordinated systems of
care for children with special health care needs.
In addition to providing services to over 40 million Americans,
Title V MCH Block Grant programs save Federal and State governments'
money by ensuring that people receive preventive services to avoid more
costly chronic conditions later in life. Below are some examples of the
cost effectiveness of maternal and child health interventions and the
role of this program:
--Total medical costs are lower for exclusively breastfed infants
than never-breastfed infants since breastfed infants typically
need fewer sick care visits, prescriptions and
hospitalizations. State MCH programs promote breastfeeding by
developing educational materials for new mothers on
breastfeeding practices and providing information on
breastfeeding to all residents of their States through
websites, toll free telephone lines and coordinating with other
local and State programs.
--Studies demonstrate that every $1 spent on smoking cessation
counseling for pregnant women saves $3 in neonatal intensive
care costs. State MCH programs fund State-wide smoking
cessation or ``quit lines'' for pregnant women and provide
education within their State about the dangers of smoking
during pregnancy, helping moms and moms-to-be quit smoking and
reducing their risk of premature birth.
--Every $1 spent on preconception care programs for women with
diabetes can reduce health costs by up to $5.19 by preventing
costly complications in both mothers and babies. Investing $10
per person per year in community based disease prevention could
save more than $16 billion annually within 5 years. State MCH
and chronic disease programs work together at the State and
community levels to educate women, children and families about
the importance of physical activity, nutrition and obesity
prevention throughout the lifespan.
--Early detection of genetic and metabolic conditions can lead to
reductions in death and disability as well as saved costs. For
example, phenylketonuria (PKU) a rare metabolic disorder
affects approximately one of every 15,000 infants born in the
U.S. Studies have found that PKU screening and treatment
represent a net direct costs savings. State MCH programs are
responsible for assuring that newborn screening systems are in
place statewide and that clinicians are alerted when follow up
is required.
--Early detection of physical and intellectual disabilities results
in more efficient and effective treatment and support for
children with special health care needs. High-quality programs
for children at risk produce strong economic returns ranging
from about $4 per dollar invested to over $10 per dollar
invested. State MCH programs administer the State and
territorial Early Childhood Comprehensive Systems Initiative to
support State and community efforts to strengthen, improve and
integrate early childhood service systems.
--The injuries incurred by children and adolescents in 1 year create
total lifetime economic costs estimated at more than $50
billion in medical expenses and lost productivity. State MCH
programs examine data and translate it into information and
policy to positively impact the incidence of infant mortality
and other factors that may contribute to child deaths. State
MCH programs invest in injury prevention programs, including
State and local initiatives to promote the proper use of child
safety seats and helmets. Additionally State MCH programs
promote safe sleeping practices to prevent Sudden Infant Death
Syndrome (SIDS).
--The total cost of adolescent health risk behaviors is estimated to
be $435.4 billion per year. Risky behaviors have impact on the
health and well being of adolescents included smoking, binge
drinking, substance abuse, suicide attempts and high risk
sexual behavior. State MCH programs and their partners address
access to health care, violence, mental health and substance
use, reproductive health and prevention of chronic disease
during adulthood. State MCH programs often support State
adolescent health coordinators who work to improve the health
of adolescents within their States and territories.
Some Members of Congress contend that savings such as these will
not be realized in the near future and therefore will not result in
immediate savings in these tight fiscal times. But today we can
highlight a real-time example of how the Title V MCH Block Grant has
played a role in helping save millions in annual health care costs. In
Ohio, Title V played a lead role in providing funding for the Ohio
Perinatal Quality Collaborative (OPQC). The OPQC is charged with
reducing preterm births and improving outcomes of preterm newborns.
Using the Institute for Healthcare Improvement Breakthrough Series,
OPQC worked with 20 maternity hospitals (47 percent of all births in
the State) through a collaborative focused on several obstetric
improvement projects. OPQC reports that as a result of their efforts
over 9,000 births are full term and that approximately 250 NICU
admissions have been avoided. OPQC estimates approximately $10 million
in annual health care cost savings. Other States have similar
initiatives and we are tracking their successes.
Another key component of the Title V MCH Block Grant is the Special
Projects of Regional and National Significance (SPRANS). SPRANS funding
complements and helps ensure the success of State Title V, Medicaid and
CHIP programs by driving innovation, training young professionals and
building capacity to create integrated systems of care for mothers and
children. Examples of innovative projects funded through SPRANS include
guidelines for child health supervision from infancy through
adolescence (i.e. Bright Futures); nutrition care during pregnancy and
lactation; recommended standards for prenatal care; successful
strategies for the prevention of childhood injuries; and health safety
standards for out of home childcare facilities.
Without a sustained Federal investment the aforementioned savings
will not be realized, program capacity and supports will be diminished
and our Nation's ability to address the most pressing needs of these
vulnerable populations will not be possible. The Title V MCH Block
Grant supports a system which treats a whole person, not by their
specific disease and AMCHP strongly urges Congress to sustain this
investment at $640 million in fiscal year 2014.
In addition to the Title V MCH block grant AMCHP is extremely
concerned about any future proposals to cut funding from other core
programs designed to assure the health of our Nation's families. We
strongly urge you to sustain funding for the Centers for Control and
Prevention (CDC). It is short sighted and counterproductive to further
cut discretionary funding for prevention in the interest of deficit
reduction. CDC programs should be protected from further cuts that will
have profound consequences on our capacity to address the needs of the
most vulnerable.
______
Prepared Statement of the Association of Minority Health Professions
Schools
SUMMARY OF FISCAL YEAR 2014 RECOMMENDATIONS
_______________________________________________________________________
1) Title VII Health Professions Training Programs:
-- $24.602 million for the Minority Centers Of Excellence.
-- $22.133 million for the Health Careers Opportunity Program.
2) $32 billion for the National Institutes of Health:
-- Provide proportional increased support for the National
Institute on Minority Health and Health Disparities.
-- Provide proportional increased support for Research Centers for
Minority Institutions.
3) $65 million for the Department of Health and Human Services'
Office of Minority Health.
4) $65 million for the Department of Education's Strengthening
Historically Black Graduate Institutions Program.
_______________________________________________________________________
Mr. Chairman and members of the subcommittee, thank you for the
opportunity to present my views before you. I am Dr. Wayne J. Riley,
Chairman of the Board of Directors of the Association of Minority
Health Professions Schools (AMHPS) and the President and Chief
Executive Officer of Meharry Medical College. AMHPS, established in
1976, is a consortium of our Nation's twelve (12) historically black
medical, dental, pharmacy, and veterinary medicine schools. The members
are two dental schools at Howard University and Meharry Medical
College; four colleges of medicine at The Charles Drew University,
Howard University, Meharry Medical College, and Morehouse School of
Medicine; five schools of pharmacy at Florida A&M University, Hampton
University, Howard University, Texas Southern University, and Xavier
University; and one college of veterinary medicine at Tuskegee
University.. In all of these roles, I have seen firsthand the
importance of minority health professions institutions and the Title
VII Health Professions Training programs.
Mr. Chairman, I speak for our institutions, when I say that the
minority health professions institutions and the Title VII Health
Professionals Training programs address a critical national need.
Persistent and severe staffing shortages exist in a number of the
health professions, and chronic shortages exist for all of the health
professions in our Nation's most medically underserved communities.
Furthermore, even after the landmark passage of health reform, it is
important to note that our Nation's health professions workforce does
not accurately reflect the racial composition of our population. For
example while blacks represent approximately 15 percent of the U.S.
population, only 2-3 percent of the Nation's health professions
workforce is black. Mr. Chairman, I would like to share with you how
your committee can help AMHPS continue our efforts to help provide
quality health professionals and close our Nation's health disparity
gap.
There is a well established link between health disparities and a
lack of access to competent healthcare in medically underserved areas.
As a result, it is imperative that the Federal Government continue its
commitment to minority health profession institutions and minority
health professional training programs to continue to produce healthcare
professionals committed to addressing this unmet need--even in austere
financial times.
An October 2006 study by the Health Resources and Services
Administration (HRSA)--during the Bush Administration--entitled ``The
Rationale for Diversity in the Health Professions: A Review of the
Evidence'' found that minority health professionals serve minority and
other medically underserved populations at higher rates than non-
minority professionals. The report also showed that; minority
populations tend to receive better care from practitioners who
represent their own race or ethnicity, and non-English speaking
patients experience better care, greater comprehension, and greater
likelihood of keeping follow-up appointments when they see a
practitioner who speaks their language. Studies have also demonstrated
that when minorities are trained in minority health profession
institutions, they are significantly more likely to: 1) serve in rural
and urban medically underserved areas, 2) provide care for minorities
and 3) treat low-income patients.
As you are aware, Title VII Health Professions Training programs
are focused on improving the quality, geographic distribution and
diversity of the healthcare workforce in order to continue eliminating
disparities in our Nation's healthcare system. These programs provide
training for students to practice in underserved areas, cultivate
interactions with faculty role models who serve in underserved areas,
and provide placement and recruitment services to encourage students to
work in these areas. Health professionals who spend part of their
training providing care for the underserved are up to 10 times more
likely to practice in underserved areas after graduation or program
completion.
In fiscal year 2014, funding for the Title VII Health Professions
Training programs must be robust, especially the funding for the
Minority Centers of Excellence (COEs) and Health Careers Opportunity
Program (HCOPs). In addition, the funding for the National Institutes
of Health (NIH)'s National Institute on Minority Health and Health
Disparities (NIMHD), as well as the Department of Health and Human
Services (HHS)'s Office of Minority Health (OMH), should be preserved.
Minority Centers of Excellence.--COEs focus on improving student
recruitment and performance, improving curricula in cultural
competence, facilitating research on minority health issues and
training students to provide health services to minority individuals.
COEs were first established in recognition of the contribution made by
four historically black health professions institutions to the training
of minorities in the health professions. Congress later went on to
authorize the establishment of ``Hispanic'', ``Native American'' and
``Other'' Historically black COEs. For fiscal year 2014, I recommend a
funding level of $24.602 million for COEs.
Health Careers Opportunity Program (HCOP).--HCOPs provide grants
for minority and non-minority health profession institutions to support
pipeline, preparatory and recruiting activities that encourage minority
and economically disadvantaged students to pursue careers in the health
professions. Many HCOPs partner with colleges, high schools, and even
elementary schools in order to identify and nurture promising students
who demonstrate that they have the talent and potential to become a
health professional. For fiscal year 2014, I recommend a funding level
of $22.133 million for HCOPs.
NATIONAL INSTITUTES OF HEALTH
National Institute on Minority Health and Health Disparities.--The
National Institute on Minority Health and Health Disparities (NIMHD) is
charged with addressing the longstanding health status gap between
minority and nonminority populations. The NIMHD helps health
professions institutions to narrow the health status gap by improving
research capabilities through the continued development of faculty,
labs, and other learning resources. The NIMHD also supports biomedical
research focused on eliminating health disparities and develops a
comprehensive plan for research on minority health at the NIH.
Furthermore, the NIMHD provides financial support to health professions
institutions that have a history and mission of serving minority and
medically underserved communities through its Centers of Excellence
program. For fiscal year 2014, I recommend funded increases
proportional with the funding of the overall NIH, with increased FTEs.
Research Centers at Minority Institutions.--The Research Centers at
Minority Institutions program (RCMI), newly moved to the National
Institute on Minority Health and Health Disparities has a long and
distinguished record of helping our institutions develop the research
infrastructure necessary to be leaders in the area of health
disparities research. Although NIH has received unprecedented budget
increases in recent years, funding for the RCMI program has not
increased by the same rate. Therefore, the funding for this important
program grow at the same rate as NIH overall in fiscal year 2014.
DEPARTMENT OF HEALTH AND HUMAN SERVICES
Office of Minority Health.--Specific programs at OMH include:
assisting medically underserved communities with the greatest need in
solving health disparities and attracting and retaining health
professionals; assisting minority institutions in acquiring real
property to expand their campuses and increase their capacity to train
minorities for medical careers; supporting conferences for high school
and undergraduate students to interest them in health careers, and
supporting cooperative agreements with minority institutions for the
purpose of strengthening their capacity to train more minorities in the
health professions.
The OMH has the potential to play a critical role in addressing
health disparities, however that role will be greatly diminished if
this agency does not retain its grant-making authority. For fiscal year
2014, I recommend a funding level of $65 million for the OMH.
DEPARTMENT OF EDUCATION
Strengthening Historically Black Graduate Institutions.--The
Department of Education's Strengthening Historically Black Graduate
Institutions (HBGI) program (Title III, Part B, Section 326) is
extremely important to AMHPS. The funding from this program is used to
enhance educational capabilities, establish and strengthen program
development offices, initiate endowment campaigns, and support numerous
other institutional development activities. In fiscal year 2014, an
appropriation of $65 million is suggested to continue the vital support
that this program provides to historically black graduate institutions.
Mr. Chairman, please allow me to express my appreciation to you and
the members of this subcommittee. With your continued help and support,
AMHPS' member institutions and the Title VII Health Professions
Training programs and the historically black health professions schools
can help this country to overcome health disparities. Congress must be
careful not to eliminate, paralyze or stifle the institutions and
programs that have been proven to work. The Association seeks to close
the ever widening health disparity gap. If this subcommittee will give
us the tools, we will continue to work towards the goal of eliminating
that disparity everyday.
Thank you, Mr. Chairman.
______
Prepared Statement of the Association of Public Television Stations
(APTS) and the Public Broadcasting Service (PBS)
On behalf of America's 361 public television stations, we
appreciate the opportunity to submit testimony for the record on the
importance of Federal funding for local public television stations and
PBS. We urge the subcommittee to support level funding of $445 million
in two-year advance funding for the Corporation for Public Broadcasting
in fiscal year 2016, and level funding of $27.3 million for the Ready
To Learn program at the Department of Education in fiscal year 2014.
Corporation for Public Broadcasting--fiscal year 2016 Request: $445
million, two-year advance funded
More than 40 years after the inception of public broadcasting,
local stations and PBS continue to serve as the treasured educational
and cultural institutions envisioned by their founders, reaching
America's local communities with unique, essential and unsurpassed
programming and services.
Local stations and PBS treat their audience as citizens rather than
mere consumers, providing essential services to all Americans, not just
the 18-49 year olds to whom advertisers hope to appeal to. We serve
everyone, everywhere, every day, for free.
Public broadcasting serves the public good--in education, public
affairs, public safety, the preservation of the national memory and
celebration of the American culture, and many other areas--and richly
deserves public support. The overwhelming majority of Americans agree.
In a recent bi-partisan poll conducted by Hart Research Associates/
American Viewpoint, nearly 70 percent of American voters, including
majorities of self-identifying Republicans, Independents, and Democrats
support continued Federal funding for public broadcasting. In addition,
polls shows that Americans consider PBS to be the second most
appropriate expenditure of public funds, behind only military defense.
Federal support for CPB and local public television stations has
resulted in a nationwide system of locally owned and controlled,
trusted, community-driven and community responsive media entities that
form an incredibly successful public-private partnership. At an annual
cost of about $1.35 per year for each American, public broadcasting is
a smart investment creating important economic activity while providing
an essential educational and cultural service. Public media provides a
6 to 1 return on investment for every Federal dollar. In addition,
public broadcasting directly supports over 20,000 jobs, and the vast
majority of them are in local public television and radio stations in
hundreds of communities across America.
We seek Federal funding for public broadcasting because we are part
of the Nation's public service infrastructure, just like public
libraries, public schools and public highways.
Funding through CPB is absolutely essential to public television
stations. Stations rely on the Federal investment to develop local
programming, operate their facilities, pay their employees and provide
community resources on-air, online and on-the-ground. This funding is
particularly important to rural stations that struggle to raise local
funds from individual donors due to the smaller and often economically
strained population base. At the same time it is often more costly to
serve rural areas due to the topography and distances between
communities. As a result, public broadcasters, with their commitment to
universal service, are often the only local broadcast source for these
rural communities.
More than 70 percent of funding appropriated to CPB reaches local
stations in the form of Community Service Grants. On average, Federal
spending makes up approximately 15 percent of local television
station's budgets. However, for many smaller and rural stations,
Federal funding represents more than 30-50 percent (and in a handful of
instances, an even larger percentage) of their total budget. For all
stations, this Federal funding is the ``lifeblood'' of public
broadcasting, providing critical seed money to local stations that
enables them to build additional support from State legislatures,
private foundations and corporations, and ``viewers like you.''
A 2007 GAO report concluded that these Federal Community Service
Grants are an irreplaceable source of revenue, and that ``substantial
growth of nonFederal funding appears unlikely.'' It also found that
``cuts in Federal funding could lead to a reduction in staff, local
programming or services.'' In addition, a June 2012 study requested by
this subcommittee and conducted by an independent third party for CPB
came to the same conclusion as the GAO: Federal funding for public
broadcasting is irreplaceable.
Federal support combined with the advent of digital technology has
created enormous potential for stations, allowing them to bring content
to Americans in new, innovative ways while retaining our fundamental
public service mission. Americans streamed 229 million videos across
PBS' web and mobile platforms in January 2013 alone and in December
2012, 45 percent of all video minutes consumed on kids' Internet sites
were on PBSKIDS.org. Further, public television stations are now
utilizing a wide array of digital tools to expand their current roles
as educators, local conveners and vital sources of trusted information
at a time when their communities need them most.
As the leading source of digital learning tools for America's
preschool teachers and K-12 classrooms with resources to help build
science, math and literacy skills, PBS and local stations make-up the
Nation's largest classroom. Local stations provide free, cutting edge,
educational content for all Americans so that regardless of their
family's income, children have access to safe, non-commercial media
that has helped prepare 90 million American kids for success in school
and has been proven to help close the achievement gap.
Stations are also responding to the needs of the 21st century
classroom by expanding digital educational resources for teachers,
students and parents alike. For example, stations and PBS are working
together on PBS Learning Media, an online portal where educators can
access standards-based, curriculum-aligned digital learning objects
created from public television content as well as material from the
Library of Congress, National Archives, and other contributors to the
Department of Education's Learning Registry. Over 28,000 homeschooling
families rely on PBS for instructive resources like PBS LearningMedia.
Stations are also building homegrown learning platforms like Maryland
Public Television's Thinkport online system, which the State
superintendent of schools has credited with helping raise Maryland's
students to the top of the student achievement rankings nationwide.
In their role as community conveners, stations have been working to
confront the dropout crisis in America's high schools. CPB developed
the American Graduate initiative, a significant investment and
partnership with local stations and their communities to address the
daunting high school dropout problem. Stations are providing resources
and services to raise awareness, coordinate action with community
partners, and work directly with students, parents, teachers, mentors,
volunteers and leaders to lower the drop-out rate in their respective
communities.
Local public television stations have also embraced the
opportunities of digital technology as a way to help address emergency
response and homeland security issues in their communities. Stations
like Las Vegas PBS have integrated their digital technology with local
public safety officials to provide enhanced emergency communications
that better aid the responders and provide citizens with needed
information during a crisis. Vegas PBS is also the largest job trainer
in Nevada, and this manifold mission of service is being emulated by
public television stations nationwide.
Local public television stations serve as essential communications
hubs in their communities providing unparalleled local coverage of
news, current events, and State legislatures that encourages every
American to become a more informed citizen. Public television is the
place for real public affairs programming, real news, real history,
real science, real art that makes us think, teaches us useful things,
and inspires us to be a better, more sophisticated, more civilized,
more successful people. We bring the wonders of the world--Broadway
shows, the finest museums, the best professors and much more--to the
most remote places in our country.
In order for our stations to continue playing this vital role in
their communities, APTS and PBS respectfully request $445 million for
CPB, two-year advance funded for fiscal year 2016.
Two-year advance funding is essential to the mission of public
broadcasting. This longstanding practice, which was proposed by
President Ford and embraced by Congress in 1976, establishes a firewall
insulating programming decisions from political interference, enables
the leveraging of funds to ensure a successful public-private
partnership, and provides stations with the necessary lead time to plan
in-depth programming.
Public television's history of editorial independence has paid off
in unprecedented levels of public trust--for the tenth consecutive
year, the American people have ranked PBS as one of the most trusted
national institutions. Advance funding and the firewall it provides is
vital to maintaining this credibility among the American public.
In addition, local public broadcasting stations are able to
leverage the two-year advance funding to raise State, local and private
funds, ensuring the continuation of this strong public-private
partnership. These Federal funds act as essential seed money for
fundraising efforts at every station, no matter its size.
Finally, the two-year advance funding mechanism also gives stations
and producers the critical lead time needed to plan and produce high-
quality programs. The signature series that demonstrate the depth and
breadth of public television, like Ken Burns' The Civil War and Henry
Hampton's Eyes on the Prize, take several years to produce. Ken Burns'
documentary schedule is already planned through 2019, and it will
educate the Nation on subjects ranging from the Vietnam War to the
history of country music.
The fact that stations know they will have funding to support
projects like these in advance is critical for producers to be able to
actively develop groundbreaking projects. In addition, two-year advance
funding is essential to the creation of local programming over multiple
fiscal years as stations convene the community to identify needs,
recruit partners, conduct research, develop content and deliver
services.
The two-year advance funding is essential for stations as they
continue to plan the production of the unparalleled programming and
local services that educate, inspire, inform and entertain the American
people in the unique way only public broadcasting can.
Ready To Learn--fiscal year 2014 Request: $27.3 million (Department of
Education)
The Ready To Learn (RTL) competitive grant program uses the power
of public television's on-air, online, mobile and on-the-ground
educational content to build the math and reading skills of children
between the ages of two and eight, especially those from low-income
families. Federal support funds evidence-based television programs and
digital content that teach key reading, math and STEM skills,
effectively reaching our Nation's children.
Together, CPB and PBS are collaborating with teams of math and
literacy experts, technologists, education organizations, and
producers, to design and test media that can help close the achievement
gap. Numerous studies show that RTL content has a significant and
positive effect on the educational lives of children who use it. For
example, one study showed that children who watched the RTL-funded PBS
series SUPER WHY! scored 46 percent higher on standardized tests than
those who did not watch the show
Pivoting off the success in literacy, public media has incorporated
early math skills into RTL to help bridge the achievement gap by
further innovating educational media content, educating kids inside and
outside the classroom, and engaging local communities. Studies have
already shown that using RTL content in low-income homes improves pre-
school age kids' numerical sense skills. In addition to the content,
new tools will be provided including a sophisticated progress tracking
system that equips parents and educators with the means to measure
student progress, in real time. RTL will continue to be rigorously
evaluated for its appeal and efficacy, so that the program can continue
to offer America's youngest citizens the tools they need to succeed in
school and in life.
In addition to being research-based and teacher tested, the RTL
Television program also provides excellent value for our Federal
dollars. In the last five-year grant round, public broadcasting
leveraged an additional $50 million in funding to augment the $73
million investment by the Department of Education for content
production. Without the investment of the Federal Government, this
supplemental funding would likely end.
In fiscal year 2013 the President's budget proposed consolidating
Ready To Learn into a larger grant program. APTS and PBS are concerned
that the consolidation of this program would end the ground-breaking
educational impact that RTL has had on kids nationwide, and
particularly those with limited access to other educational resources.
Consolidation would deny RTL the benefits that come from the unique
understanding of needs and relationship that local public media
stations have with the communities they serve. At the same time,
consolidation undermines PBS's ability to create television and online
content on an economy of scale that results from producing once for
national distribution through member stations who can tailor outreach
to the demands of their communities. This model allows PBS and local
stations to annually reach 80 percent of America's children ages 2 to 8
through television and another 13 million per month online and on
mobile apps. The local-national partnership has made RTL tremendously
efficient and effective and consolidation or elimination of the program
would severely affect the ability of local stations to respond to their
communities' educational needs, eliminating the critical resources
provided by this program for children, parents and teachers.
Ready To Learn symbolizes the mission of public media and is a
shining example of a public-private partnership as Federal funds are
leveraged to create the most appealing and impactful children's
educational content that is supplemented by online and on-the-ground
resources. Without the Ready To Learn program, millions of families
would lose access to this incredible high-quality education content,
especially the low-income and underserved households that are a
particular focus of this program.
One hundred seventy million Americans regularly rely on public
broadcasting--on television, on the radio, online, and in the
classroom--because we provide them something they need that no one else
in the media world provides: A place to think. A place to learn. A
place to grow. A tool for the citizen. None of this would be possible
without the Federal investment in public broadcasting.
We request that Congress continue its commitment to this highly
successful public-private partnership by continuing to provide level
funding for the two-year advance of the Corporation for Public
Broadcasting and the stand alone Ready To Learn Program.
______
Prepared Statement of the Association of Rehabilitation Nurses
INTRODUCTION
On behalf of the Association of Rehabilitation Nurses (ARN), I
appreciate having the opportunity to submit written testimony to the
Senate LHHS Appropriations Subcommittee regarding funding for nursing
and rehabilitation related programs in fiscal year 2014. ARN represents
nearly 12,000 rehabilitation nurses that work to enhance the quality of
life for those affected by physical disability and/or chronic illness.
ARN understands that Congress has many concerns and limited resources,
but believes that chronic illnesses and physical disabilities are heavy
burdens on our society that must be addressed.
REHABILITATION NURSES AND REHABILITATION NURSING
Rehabilitation nurses help individuals affected by chronic illness
and/or physical disability adapt to their condition, achieve their
greatest potential, and work toward productive, independent lives. We
take a holistic approach to meeting patients' nursing and medical,
vocational, educational, environmental, and spiritual needs.
Rehabilitation nurses begin to work with individuals and their families
soon after the onset of a disabling injury or chronic illness. They
continue to provide support and care, including patient and family
education, which empowers these individuals when they return home, or
to work, or school. The rehabilitation nurse often teaches patients and
their caregivers how to access systems and resources.
Rehabilitation nursing is a philosophy of care, not a work setting
or a phase of treatment. We base our practice on rehabilitative and
restorative principles by: (1) managing complex medical issues; (2)
inter professional collaboration with other specialists; (3) providing
ongoing patient/caregiver education; (4) setting goals for maximum
independence; and (5) establishing plans of care to maintain optimal
wellness. Rehabilitation nurses practice in all settings, including
freestanding rehabilitation facilities, hospitals, long-term subacute
care facilities/skilled nursing facilities, long-term acute care
facilities, comprehensive outpatient rehabilitation facilities, home
health, and private practices, just to name a few.
As we celebrate the third anniversary of the Affordable Care Act
(ACA)--which focused on creating a system that will increase access to
quality care, emphasizes prevention, and decreases costs--it is
critical that a substantial investment be made in the nursing workforce
programs and in the scientific research that provides the basis for
nursing practice. To ensure that patients receive the best quality care
possible, ARN supports Federal programs and research institutions that
address the national nursing shortage and conduct research focused on
nursing and medical rehabilitation, e.g., traumatic brain injury.
Therefore, ARN respectfully requests that the subcommittee provide
increased funding for the following programs:
nursing workforce and development programs at the health resources and
SERVICES ADMINISTRATION (HRSA)
ARN supports efforts to resolve the national nursing shortage,
including appropriate funding to address the shortage of qualified
nursing faculty. Rehabilitation nursing requires a high-level of
education and technical expertise, and ARN is committed to assuring and
protecting access to professional nursing care delivered by highly-
educated, well-trained, and experienced registered nurses for
individuals affected by chronic illness and/or physical disability.
According to the Bureau of Labor Statistics' Employment Projections
for 2010-2020, the expected number of practicing nurses will grow from
2.74 million in 2010 to 3.45 million in 2020, an increase of 712,000 or
26 percent. The projections further explain the need for 495,500
replacements in the nursing workforce, bringing the total number of job
openings for nurses due to growth and replacements to 1.2 million by
2020. The demand for nurses will continue to grow as the baby-boomer
population ages, nurses retire, and the need for healthcare
intensifies. Implementation of the new health reform law will also
increase the need for a well-trained and highly skilled nursing
workforce. The Institute of Medicine has released recommendations on
how to help the nursing workforce meet these new demands, but we are
destined to fall short of these lofty goals if there are not enough
nurses to facilitate change.
For nearly 50 years, the Nursing Workforce Development programs,
authorized under Title VIII of the Public Health Service Act, have
helped build the supply and distribution of qualified nurses to meet
our Nation's healthcare needs. The Title VIII programs bolster nursing
education at all levels, from entry-level preparation through graduate
study, and provide support for institutions that educate nurses for
practice in rural and medically underserved communities. Today, the
Title VIII programs are essential to ensure the demand for nursing care
is met. Between fiscal year 2005 and 2010 alone, the Title VIII
programs supported over 400,000 nurses and nursing students as well as
numerous academic nursing institutions, and healthcare facilities.
Educating new nurses to fill these vacancies is a great way to put
Americans back to work and simultaneously enhance an ailing health care
system.
ARN strongly supports the national nursing community's request of
$251 million in fiscal year 2014 funding for Federal Nursing Workforce
Development programs at HRSA.
NATIONAL INSTITUTE ON DISABILITY AND REHABILITATION RESEARCH (NIDRR)
The National Institute on Disability and Rehabilitation Research
(NIDRR) provides leadership and support for a comprehensive program of
research related to the rehabilitation of individuals with
disabilities. As one of the components of the Office of Special
Education and Rehabilitative Services at the U.S. Department of
Education, NIDRR operates along with the Rehabilitation Services
Administration and the Office of Special Education Programs.
The mission of NIDRR is to generate new knowledge and promote its
effective use to improve the abilities of people with disabilities to
perform activities of their choice in the community, and also to expand
society's capacity to provide full opportunities and accommodations for
its citizens with disabilities. NIDRR conducts comprehensive and
coordinated programs of research and related activities to maximize the
full inclusion, social integration, employment and independent living
of individuals of all ages with disabilities. NIDRR's focus includes
research in areas such as: employment, health and function, technology
for access and function, independent living and community integration,
and other associated disability research areas.
ARN strongly supports the work of NIDRR and encourages Congress to
provide the maximum possible fiscal year 2014 funding level.
NATIONAL INSTITUTE OF NURSING RESEARCH (NINR)
ARN understands that research is essential for the advancement of
nursing science, and believes new concepts must be developed and tested
to sustain the continued growth and maturation of the rehabilitation
nursing specialty. The National Institute of Nursing Research (NINR)
works to create cost-effective and high-quality health care by testing
new nursing science concepts and investigating how to best integrate
them into daily practice. Through grants, research training, and inter
professional collaborations, NINR addresses care management of patients
during illness and recovery, reduction of risks for disease and
disability, promotion of healthy lifestyles, enhancement of quality of
life for those with chronic illness, and care for individuals at the
end of life. NINR's broad mandate includes seeking to prevent and delay
disease and to ease the symptoms associated with both chronic and acute
illnesses. NINR's recent areas of research focus include the following:
--End of life and palliative care in rural areas;
--Research in multi-cultural societies;
--Bio-behavioral methods to improve outcomes research; and
--Increasing health promotion through comprehensive studies.
ARN respectfully requests $150 million in fiscal year 2014 funding
for NINR to continue its efforts to address issues related to chronic
and acute illnesses.
TRAUMATIC BRIAN INJURY (TBI)
According to the Brain Injury Association of America, 1.7 million
people sustain a traumatic brain injury (TBI) each year.\1\ This figure
does not include the 150,000 cases of TBI suffered by soldiers
returning from wars in Afghanistan and conflicts around the world.
The annual national cost of providing treatment and services for
these patients is estimated to be nearly $60 million in direct care and
lost workplace productivity. Continued fiscal support of the Traumatic
Brain Injury Act will provide critical funding needed to further
develop research and improve the lives of individuals who suffer from
traumatic brain injury.
Continued funding of the TBI Act will promote sound public health
policy in brain injury prevention, research, education, treatment, and
community-based services, while informing the public of needed support
for individuals living with TBI and their families.
ARN strongly supports the current work being done by the Centers
for Disease Control and Prevention (CDC) and HRSA on TBI programs.
These programs contribute to the overall body of knowledge in
rehabilitation medicine.
ARN urges Congress to support the following fiscal year 2014
funding requests for programs within the TBI Act: $10 million for CDC's
TBI registries and surveillance, prevention and national public
education and awareness efforts; $8 million for the HRSA Federal TBI
State Grant Program; and $4 million for the HRSA Federal TBI Protection
and Advocacy Systems Grant Program.
CONCLUSION
ARN appreciates the opportunity to share our priorities for fiscal
year 2014 funding levels for nursing and rehabilitation programs. ARN
maintains a strong commitment to working with Members of Congress,
other nursing and rehabilitation organizations, and other stakeholders
to ensure that the rehabilitation nurses of today continue to practice
tomorrow. By providing the fiscal year 2014 funding levels detailed
above, we believe the subcommittee will be taking the steps necessary
to ensure that our Nation has a sufficient nursing workforce to care
for patients requiring rehabilitation from chronic illness and/or
physical disability.
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\1\ http://www.biausa.org/living-with-brain-injury.htm.
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______
Prepared Statement of the Association of University Programs in
Occupational Health and Safety (AUPOHS)
I am testifying on behalf of the Association of University Programs
in Occupational Health and Safety (AUPOHS), an organization
representing the 18 multidisciplinary, university-based Education and
Research Centers (ERCs) and the nine Agricultural Centers for Disease
and Injury Research, Education, and Prevention funded by the National
Institute for Occupational Safety and Health (NIOSH), the Federal
agency responsible for supporting education, training, and research for
the prevention of work-related injuries and illnesses in the United
States.
We respectfully request that the fiscal year 2014 Labor, Health and
Human Services Appropriations bill include level funding of $24.268
million for the Education and Research Centers and $22 million for the
Agriculture, Forestry and Fishing Program within the NIOSH budget.
The ERCs are regional resources for parties involved with
occupational health and safety--industry, labor, Government, academia,
and the public. Collectively, the ERCs provide training and research
resources to every Public Health Region in the United States. ERCs
contribute to national efforts to reduce losses associated with work-
related illnesses and injuries by offering:
Prevention Research.--Developing the basic knowledge and associated
technologies to prevent work-related illnesses and injuries.
Professional Training.--ERC's support 86 graduate degree programs
in Occupational Medicine, Occupational Health Nursing, Safety
Engineering, Industrial Hygiene, and other related fields to provide
qualified professionals in essential disciplines.
Research Training.--Preparing doctoral-trained scientists who will
respond to future research challenges and who will prepare the next
generation of occupational health and safety professionals.
Continuing Education.--Short courses designed to enhance
professional skills and maintain professional certification for those
who are currently practicing in occupational health and safety
disciplines. These courses are delivered throughout the regions of the
18 ERCs as well as through distance learning technologies.
Regional Outreach.--Responding to specific requests from local
employers and workers on issues related to occupational health and
safety.
Occupational injury and illness represent a striking burden on
America's health and well-being. Despite significant improvements in
workplace safety and health over the last several decades, each year
nearly 1.2 million workers are injured seriously enough to require time
off work and, daily, an average of 11,000 U.S. workers sustain
disabling injuries on the job, 13 workers die from an injury suffered
at work, and 146 workers die from work-related diseases. This burden
costs industry and citizens an estimated $4 billion per week--$250
billion dollars per year. This is an especially tragic situation
because work-related fatalities, injuries and illnesses are preventable
with effective, professionally directed, health and safety programs.
The rapidly changing workplace continues to present new health
risks to American workers that need to be addressed through
occupational safety and health research. For example, between 2000 and
2015, the number of workers 55 years and older will increase 72 percent
to over 31 million. Work related injury and fatality rates increase at
age 45, with rates for workers 65 years and older nearly three times
greater than younger workers. In addition to changing demographics, the
rapid development of new technologies (e.g., nanotechnology) poses many
unanswered questions with regard to workplace health and safety that
require urgent attention.
The heightened awareness of terrorist threats, and the increased
responsibilities of first responders and other homeland security
professionals, illustrates the need for strengthened workplace health
and safety in the ongoing war on terror. The NIOSH ERCs play a crucial
role in preparing occupational safety and health professionals to
identify and mitigate vulnerabilities to terrorist attacks and to
increase readiness to respond to biological, chemical, or radiological
attacks. In addition, occupational health and safety professionals have
worked for several years with emergency response teams to minimize
disaster losses. For example, NIOSH took a lead role in protecting the
safety of 9/11 emergency responders in New York City and Virginia, with
ERC-trained professionals applying their technical expertise to meet
immediate protective needs and to implement evidence-based programs to
safeguard the health of clean-up workers. Additionally, NIOSH is now
administering grants to provide health screening of World Trade Center
responders. We need manpower to address these challenges and it is the
NIOSH ERCs that train the professionals who fill key positions in
health and safety programs, regionally and around the Nation. And
because ERCs provide multi-disciplinary training, ERC graduates protect
workers in virtually every walk of life. Despite the success of the
ERCs in training such qualified professionals, the country continues to
have ongoing manpower shortages.
The Agricultural Safety and Health Centers program was established
by Congress in 1990 (Public Law 101-517) in response to evidence that
agricultural workers were suffering substantially higher rates of
occupational injury and illness than other U.S. workers.
Today the NIOSH Agriculture, Forestry, and Fishing (AFF) Initiative
includes nine regional Centers for Agricultural Disease and Injury
Research, Education, and Prevention and one national center to address
children's farm safety and health. The AFF program is the only
substantive Federal effort to meet the obligation to ensure safe
working conditions for workers in this most vital production sector.
While agriculture, forestry, and fishing constitute one of the largest
industry sectors in the U.S. (DOL 2011), most AFF operations are
themselves small: nearly 78 percent employ fewer than 10 workers, and
most rely on family members and/or immigrant, part-time, contract and
seasonal labor. Thus, many AFF workers are excluded from labor
protections, including many of those enforced by OSHA.
In 2010 the AFF sector had a work-related fatality rate of 28 per
100,000 workers, the highest of any sector in the Nation. More than 1
in 100 AFF workers incur nonfatal injuries resulting in lost work days
each year. These reported figures do not even include men, women, and
youths on farms with fewer than 11 full-time employees. In addition to
the harm to individual men, women, and families, these deaths and
injuries inflict serious economic losses including medical costs and
lost capital, productivity, and earnings. The life-saving, cost-
effective work of the NIOSH AFF program is not replicated by any other
agency:
--State and Federal OSHA personnel rely on NIOSH research in the
development of evidence-based standards for protecting
agricultural workers and would not be able to fulfill their
mission without the NIOSH AFF program.
--While committed to the well-being of farmers, the USDA has little
expertise in the medical or public health sciences. USDA no
longer funds, as it did historically, land grant university-
based farm safety specialists.
--Staff members of USDA's National Institute of Food and Agriculture
interact with NIOSH occupational safety and health research
experts to keep abreast of cutting-edge research and new
directions in this area.
NIOSH Agricultural Center activities include:
--AFF research has shown that the use of rollover protective
structures (ROPS or rollbars) and seatbelts on tractors can
prevent 99 percent of overturn-related deaths. A New York
program has increased the installation of ROPS by 10-fold and
recorded over 100 close calls with no injuries among farmers
who had installed ROPS. 99 percent of program participants said
they would recommend the program to other farmers.
--Working in partnership with producers and farm owners, the NIOSH
AFF Centers have developed evidence-based solutions for
reducing exposure to pesticides and other farm chemicals among
farmers, farm workers and their children.
--Commercial Fishing had a reported annual fatality rate 58 times
higher than the rate for all U.S. workers in 2009. Research has
shown that knowledge of maritime navigation rules and emergency
preparedness means survival. A NIOSH AFF-funded team produced
an interactive navigation training CD in three languages,
demonstrated the effectiveness of refresher survival drill
instruction, and assisted the U.S. Coast Guard's revision of
regulations requiring commercial fishing vessel captains
completed navigation training.
--The Centers have partnered with producers, employers, the Federal
migrant health program, physicians, nurses, and Internet
Technology specialists to educate farmers, employers, and
health care providers about the best way to treat and prevent
agricultural injury and illness.
--In 2010, the logging industry had a reported fatality rate of 91.9
deaths per 100,000 workers (preliminary data), a rate more than
25 times higher than that of all U.S. workers. NIOSH AFF
Centers including the Southeast and the Northwest are uniquely
positioned to ensure the safety of our Nation's 86,000 workers
in forestry & logging.
Thank you for the opportunity to present testimony on behalf of the
many individuals committed to working to improve the safety and well
being of others in our communities.
______
Prepared Statement of the Association of Zoos and Aquariums
Chairman Harkin and Ranking Member Moran: My name is Jim Maddy, and
I am the President and CEO. Thank you for allowing me to testify on
behalf of the Nation's 211 U.S. accredited zoos and aquariums.
Specifically, I want to express my support for the inclusion of $38.6
million for the Institute of Museum and Library Services' (IMLS) Office
of Museum Services in the fiscal year 2014 Labor, Health and Human
Services, Education, and Related Agencies appropriations bill.
Founded in 1924, the Association of Zoos and Aquariums (AZA) is a
nonprofit 501c(3) organization dedicated to the advancement of zoos and
aquariums in the areas of conservation, education, science, and
recreation. Accredited zoos and aquariums annually see more than 182
million visitors, collectively generate more than $16 billion in annual
economic activity, and support more than 142,000 jobs across the
country. Over the last 5 years, AZA-accredited institutions supported
more than 4,000 field conservation and research projects with
$160,000,000 annually in more than 100 countries. In the last 10 years,
accredited zoos and aquariums formally trained more than 400,000
teachers, supporting science curricula with effective teaching
materials and hands-on opportunities. School field trips annually
connect more than 12,000,000 students with the natural world.
Aquariums and zoological parks are defined by the ``Museum and
Library Services Act of 2003'' (Public Law 108-81) as museums. The
Office of Museum Services awards grants to museums to support them as
institutions of learning and exploration, and keepers of cultural,
historical, and scientific heritages. Grants are awarded in several
areas including educational programming, professional development, and
collections management, among others.
The Nation's accredited zoos and aquariums, even while facing
budget limitations, are thriving during these uncertain economic times.
As valued members of local communities, zoos and aquariums offer a
variety of programs ranging from unique educational opportunities for
schoolchildren to conservation initiatives that benefit both local and
global species. The competitive grants offered by the IMLS Office of
Museum Services ensure that many of these programs, which otherwise may
not exist because of insufficient funds, positively impact local
communities and many varieties of species.
For example, through its 2012 Museums for American grant, the
Birmingham Zoo will support its Africa Zoo School program, which will
serve 1,200 students over 2 years. Partnering with Birmingham City
School, seventh-grade students from low-performing schools attend a
week-long ``Zoo School'' session, where they learn about the crisis of
the elephant species' survival in Africa, the cultures of people in
Africa, and the scientific and engineering research involved in
sustaining these populations. A 2011 Museums for America grant enabled
The National Aquarium in Baltimore to create a more robust volunteer
program by developing and testing new techniques to attract, train,
engage, and retain a new generation of more diverse volunteers.
Finally, the Beardsley Zoo used its 2011 Museums for America grant to
continue its ``Conservation Discovery Corps'' teen program, a year-
round informal science education program designed to provide diverse
and economically challenged but environmentally aware students with
applied wildlife conservation training in the zoo and through field
research. Students were trained in conservation and education concepts
that were applied through field expeditions and collaborations with
scientists in research and habitat restoration activities to prepare
them as zoo exhibit interpreters and teen Conservation Discovery Corps
ambassadors.
Unfortunately, current funding has allowed IMLS to fund only a
small fraction of all highly-rated grant applications. Despite this
funding shortfall, zoo and aquarium attendance has increased and the
educational services zoos and aquariums provide to schools and
communities are in greater demand than ever. Zoos and aquariums are
essential partners at the Federal, State, and local levels in providing
education and cultural opportunities that adults and children may
otherwise never enjoy.
As museums, zoos and aquariums share the same mission of preserving
the world's great treasures, educating the public about them, and
contributing to the Nation's economic and cultural vitality. Therefore,
I strongly encourage you to include $38.6 million for the Institute of
Museum and Library Services' Office of Museum Services in the fiscal
year 2014 Labor, Health and Human Services, Education, and Related
Agencies appropriations bill.
Thank you.
______
Prepared Statement of the Brain Injury Association of America
Chairman Harkin and Ranking Member Moran, thank you for the
opportunity to submit this written testimony with regard to the fiscal
year 2014 Labor-HHS-Education appropriations bill. This testimony is on
behalf of the Brain Injury Association of America (BIAA), our national
network of State affiliates, and hundreds of local chapters and support
groups from across the country.
In the civilian population alone every year, more than 1.7 million
people sustain brain injuries from falls, car crashes, assaults and
contact sports. Males are more likely than females to sustain brain
injuries. Children, teens and seniors are at greatest risk.
Recently, we are seeing an increasing number of service members
returning from the conflicts in Iraq and Afghanistan with TBI, which
has been termed one of the signature injuries of the War. Many of these
returning service members are undiagnosed or misdiagnosed and
subsequently they and their families will look to community and local
resources for information to better understand TBI and to obtain vital
support services to facilitate successful reintegration into the
community.
For the past 14 years Congress has provided minimal funding through
the HRSA Federal TBI Program to assist States in developing services
and systems to help individuals with a range of service and family
support needs following their loved one's brain injury. Similarly, the
grants to State Protection and Advocacy Systems to assist individuals
with traumatic brain injuries in accessing services through education,
legal and advocacy remedies are woefully underfunded. Rehabilitation,
community support and long-term care systems are still developing in
many States, while stretched to capacity in others. Additional numbers
of individuals with TBI as the result of war-related injuries only adds
more stress to these inadequately funded systems.
BIAA respectfully urges you to provide States with the resources
they need to address both the civilian and military populations who
look to them for much needed support in order to live and work in their
communities.
With broader regard to all of the programs authorized through the
TBI Act, BIAA specifically requests:
--$10 million (+ $4 million) for the Centers for Disease Control and
Prevention TBI Registries and Surveillance, Brain Injury Acute
Care Guidelines, Prevention and National Public Education/
Awareness
--$8 million (+ $1 million) for the Health Resources and Services
Administration (HRSA) Federal TBI State Grant Program
--$4 million (+ $1 million) for the HRSA Federal TBI Protection &
Advocacy (P&A) Systems Grant Program
CDC--National Injury Center.--The Centers for Disease Control and
Prevention's National Injury Center is responsible for assessing the
incidence and prevalence of TBI in the United States. The CDC estimates
that 1.7 million TBIs occur each year and 3.4 million Americans live
with a life-long disability as a result of TBI. In addition, the TBI
Act as amended in 2008 requires the CDC to coordinate with the
Departments of Defense and Veterans Affairs to include the number of
TBIs occurring in the military. This coordination will likely increase
CDC's estimate of the number of Americans sustaining TBI and living
with the consequences.
CDC also funds States for TBI registries, creates and disseminates
public and professional educational materials, for families, caregivers
and medical personnel, and has recently collaborated with the National
Football League and National Hockey League to improve awareness of the
incidence of concussion in sports. CDC plays a leading role in helping
standardize evidence based guidelines for the management of TBI and $1
million of this request would go to fund CDC's work in this area.
HRSA TBI State Grant Program.--The TBI Act authorizes the HHS,
Health Resources and Service Administration (HRSA) to award grants to
(1) States, American Indian Consortia and territories to improve access
to service delivery and to (2) State Protection and Advocacy (P&A)
Systems to expand advocacy services to include individuals with
traumatic brain injury. For the past thirteen years the HRSA Federal
TBI State Grant Program has supported State efforts to address the
needs of persons with brain injury and their families and to expand and
improve services to underserved and unserved populations including
children and youth; veterans and returning troops; and individuals with
co-occurring conditions
In fiscal year 2009, HRSA reduced the number of State grant awards
to 15, in order to increase each monetary award from $118,000 to
$250,000. This means that many States that had participated in the
program in past years have now been forced to close down their
operations, leaving many unable to access brain injury care.
Increasing the program to $8 million will provide funding necessary
to sustain the grants for the 21 States currently receiving funding
along with the three additional States added this year and to ensure
funding for four additional States. Steady increases over 5 years for
this program will provide for each State including the District of
Columbia and the American Indian Consortium and territories to sustain
and expand State service delivery; and to expand the use of the grant
funds to pay for such services as Information & Referral (I&R), systems
coordination and other necessary services and supports identified by
the State.
HRSA TBI P&A Program.--Similarly, the HRSA TBI P&A Program
currently provides funding to all State P&A systems for purposes of
protecting the legal and human rights of individuals with TBI. State
P&As provide a wide range of activities including training in self-
advocacy, outreach, information & referral and legal assistance to
people residing in nursing homes, to returning military seeking
veterans benefits, and students who need educational services.
Effective Protection and Advocacy services for people with
traumatic brain injury is needed to help reduce Government expenditures
and increase productivity, independence and community integration.
However, advocates must possess specialized skills, and their work is
often time-intensive. A $4 million appropriation would ensure that each
P&A can move towards providing a significant PATBI program with
appropriate staff time and expertise.
NIDRR TBI Model Systems of Care.--Funding for the TBI Model Systems
in the Department of Education is urgently needed to ensure that the
Nation's valuable TBI research capacity is not diminished, and to
maintain and build upon the 16 TBI Model Systems research centers
around the country.
The TBI Model Systems of Care program represents an already
existing vital national network of expertise and research in the field
of TBI, and weakening this program would have resounding effects on
both military and civilian populations. The TBI Model Systems are the
only source of non-proprietary longitudinal data on what happens to
people with brain injury. They are a key source of evidence-based
medicine, and serve as a ``proving ground'' for future researchers.
In order to make this program more comprehensive, Congress should
provide $11 million (+ $1.5 million) in fiscal year 2014 for NIDRR's
TBI Model Systems of Care program, in order to add one new
Collaborative Research Project. In addition, given the national
importance of this research program, the TBI Model Systems of Care
should receive ``line-item'' status within the broader NIDRR budget.
We ask that you consider favorably these requests for the CDC, the
HRSA Federal TBI Program, and the NIDRR TBI Model Systems Program to
further data collection, increase public awareness, improve medical
care, assist States in coordinating services, protect the rights of
persons with TBI, and bolster vital research.
______
Prepared Statement of the Centers for Disease Control and Prevention
(CDC) Coalition
The CDC Coalition is a nonpartisan coalition of more than 140
organizations committed to strengthening our Nation's prevention
programs. We represent millions of public health workers, clinicians,
researchers, educators, and citizens served by CDC programs.
The CDC Coalition believes that Congress should support CDC as an
agency--not just the individual programs that it funds. Given the
challenges and burdens of chronic disease and disability, constant
public health emergencies, new and reemerging infectious diseases and
other unmet public health needs--we urge a funding of $7.8 billion for
CDC's programs in fiscal year 2014. Unfortunately, the President's
fiscal year 2014 budget request for CDC represents a nearly $277
million reduction when compared with fiscal year 2012. These proposed
cuts come on top of the $577 million reduction to CDC in fiscal year
2013 due to the sequester and reduction in Prevention and Public Health
Fund resources. After these cuts, CDC's budget authority is now lower
than 2003 levels. At the same time, State and local health departments
are operating on tight budgets and with a smaller workforce. Cuts to
CDC's programs are not sustainable and will reduce the ability to
investigate and respond to public health emergencies as well as food
borne and infectious disease
By translating research findings into effective intervention
efforts, CDC has been a key source of funding for many of our State and
local programs that aim to improve the health of communities. Federal
funding through CDC provides the foundation for State and local public
health departments, supporting a trained workforce, laboratory capacity
and public health education communications systems.
CDC serves as the command center for our Nation's public health
defense system, conducting surveillance and detection of emerging and
reemerging infectious diseases. With the potential onset of a worldwide
influenza pandemic, in addition to the many other natural and man-made
threats that exist in the modern world, CDC is the Nation's expert
resource and response center, coordinating communications and action
and serving as the laboratory reference center for identifying, testing
and characterizing potential agents of biological, chemical and
radiological terrorism, emerging infectious diseases and other public
health emergencies. CDC serves as the lead agency for bioterrorism and
public health emergency preparedness and must receive sustained support
for its preparedness programs to meet future challenges. We urge you to
provide adequate funding for CDC's emergency preparedness and response
activities.
Heart disease remains the Nation's No. 1 killer. In 2010, over
597,000 people in the U.S. died from heart disease, accounting for
nearly 25 percent of all U.S. deaths. More males than females died of
heart disease in 2010 (307,384 compared to 290,305), while more females
than males died of stroke that year (77,109 compared to 52,367). Stroke
is the fourth leading cause of death and is a leading cause of
disability. In 2010, about 129,000 people died of stroke (60 percent of
them females), accounting for about 1 of every 19 deaths. CDC's Heart
Disease and Stroke Prevention Program, WISEWOMAN, and the Million
Hearts program are working improve cardiovascular health.
Cancer is the second most common cause of death in the United
States. There are 1,660,290 new cancer cases and 580,350 deaths from
cancer expected in 2013. According to the
National Institutes of Health, in 2008 the overall cost for cancer
in the U.S. was more than $201.5 billion: $77.4 billion for direct
medical costs, $124.0 billion for indirect mortality costs (cost of
lost productivity due to premature death). CDC's National Breast and
Cervical Cancer Early Detection Program helps millions of low-income,
uninsured and medically underserved women gain access to lifesaving
breast and cervical cancer screenings and provides a gateway to
treatment upon diagnosis. CDC also funds grants to all 50 States to
develop Comprehensive Cancer Control plans, bringing together a broad
partnership of public and private stakeholders to set joint priorities
and implement specific cancer prevention and control activities
customized to address each State's particular needs.
Although more than 25.8 million Americans have diabetes, nearly 7
million cases are undiagnosed. In 2010, about 1.9 million people aged
20 years or older were newly diagnosed with diabetes. Diabetes is the
leading cause of kidney failure, nontraumatic lower-limb amputations,
and new cases of blindness among adults in the U.S. The total direct
and indirect costs associated with diabetes were $245 billion in 2012.
CDC's Division of Diabetes Translation funds critical diabetes
prevention, surveillance and control programs.
Arthritis is the most common cause of disability in the U.S.,
striking 50 million Americans of all ages, races and ethnicities. CDC's
Arthritis Program plays a critical role in addressing this growing
public health crisis and working to improve the quality of life for
individuals affected by arthritis.
Over the last 20 years, obesity rates have dramatically increased
and rates remain high. More than one third of adults are obese and 17
percent of children between the ages of 2-19 are obese. Obesity, diet
and inactivity are cross-cutting risk factors that contribute
significantly to heart disease, cancer, stroke and diabetes. CDC funds
programs to encourage the consumption of fruits and vegetables,
encourage sufficient exercise, and to develop other habits of healthy
nutrition and activity.
An estimated 443,000 people die prematurely every year due to
tobacco use. CDC's tobacco control efforts seek to prevent tobacco
addition in the first place, as well as help those who want to quit. We
must continue to support these vital programs and reduce tobacco use in
the United States.
According to CDC, only one out of three high school students
participate in daily physical education classes and one in three
children and adolescents are overweight or obese. And every year, more
than 400,000 teen girls give birth and nearly half of all sexually
transmitted diseases occur in young people between the ages of 15 and
24. CDC plays a critical role in ensuring good public health and health
promotion in our Nation's schools.
CDC provides national leadership in helping control the HIV
epidemic by working with community, State, national, and international
partners in surveillance, research, prevention and evaluation
activities. CDC estimates that about 1.1 million Americans are living
with HIV, 18 percent of who are undiagnosed. Also, the number of people
living with HIV is increasing, as new drug therapies are keeping HIV-
infected persons healthy longer and dramatically reducing the death
rate. Prevention of HIV transmission is the best defense against the
AIDS epidemic that has already killed more than 636,000 in the U.S. and
is devastating populations around the globe.
The U.S. has the highest rates of sexually transmitted diseases in
the industrialized world. More than 19 million new infections occur
each year. CDC estimates that STDs, including HIV, cost the U.S.
healthcare system as much as $17 billion annually. An adequate
investment in CDC's STD prevention programs could save millions in
annual health care costs in the future.
The National Center for Health Statistics collects data on chronic
disease prevalence, health disparities, emergency room use, teen
pregnancy, infant mortality and causes of death. The health data
collected through the Behavioral Risk Factor Surveillance System, Youth
Risk Behavior Survey, Youth Tobacco Survey, National Vital Statistics
System, and National Health and Nutrition Examination Survey are an
essential part of the Nation's statistical and public health
infrastructure and must be adequately funded.
CDC oversees immunization programs for children, adolescents and
adults, and is a global partner in the ongoing effort to eradicate
polio worldwide. Influenza vaccination levels remain low for adults.
Levels are substantially lower for pneumococcal vaccination among
adults as well, with significant racial and ethnic disparities in
vaccination levels persisting among the elderly. Childhood
immunizations provide one of the best returns on investment of any
public health program. For every dollar spent on childhood vaccines to
prevent thirteen diseases, $10.20 is saved in direct and indirect
costs. An estimated 20 million cases of disease and 42,000 deaths are
prevented each year through timely immunization. Despite the incredible
success of the program, it faces serious financial challenges.
Injuries are the leading causes of death for persons aged 1-44
years. Unintentional injuries and violence such as older adult falls,
unintentional drug poisonings, child maltreatment and sexual violence
accounts for over 35 percent of emergency department visits annually.
Annually, injury and violence cost the U.S. approximately $406 billion
in direct and indirect medical costs including lost productivity. CDC's
Injury Center works to prevent injuries and to minimize their
consequences when they occur by researching the problem, identifying
the risk and protective factors, developing and testing interventions
and ensuring widespread adoption of proven prevention strategies.
One in every 33 babies born each year in the U.S. is born with one
or more birth defects. Birth defects are the leading cause of infant
mortality. Children with birth defects who survive often experience
lifelong physical and mental disabilities. More than 50 million people
in the U.S currently live with a disability, and 17 percent of children
under the age of 18 have a developmental disability. The National
Center on Birth Defects and Developmental Disabilities conducts
programs to protect and improve health by preventing birth defects and
developmental disabilities.
CDC's National Center for Environmental Health is essential to
protecting and ensuring the health and well being of the American
public by helping to control asthma, protecting from threats associated
with natural disasters and climate change and reducing exposure to lead
and other environmental hazards. To ensure it can carry out these vital
programs, we ask you to support and restore adequate funding for NCEH
which has been cut by nearly 25 percent since 2010.
In order to meet the ongoing public health challenges outlined
above, we urge you to adopt our fiscal year 2014 request of $7.8
billion for CDC's programs.
______
Prepared Statement of the Charles R. Drew University of Medicine And
Science
SUMMARY OF FISCAL YEAR 2014 RECOMMENDATIONS
_______________________________________________________________________
1) Provide funding for the Health Resources and Services
Administration Title VII Health Professisons Training Programs,
including:
-- $24.602 million for the Minority Centers of Excellence.
-- $22.133 million for the Health Careers Opportunity Program.
2) $32 billion for the National Institutes of Health (NIH),
specifically:
-- Proportional increase for the National Institute on Minority
Health and Health Disparities (NIMHD).
-- Proportional increase for the Research Centers at Minority
Institutions Program.
3) $65 Million for the Department of Health and Human Services'
Office of Minority Health.
4) $65 million for the Department of Education's Strengthening
Historically Black Graduate Institutions Program.
_______________________________________________________________________
Mr. Chairman and members of the subcommittee, thank you for the
opportunity to present you with testimony. The Charles Drew University
is distinctive in being the only dually designated Historically Black
Graduate Institution and Hispanic Serving Institution in the Nation. We
would like to thank you, Mr. Chairman, for the support that this
subcommittee has given to our University to produce minority health
professionals to eliminate health disparities as well as do
groundbreaking research to save lives.
The Charles Drew University is located in the Watts-Willowbrook
area of South Los Angeles. Its mission is to prepare predominantly
minority doctors and other health professionals to care for underserved
communities with compassion and excellence through education, clinical
care, outreach, pipeline programs and advanced research that makes a
rapid difference in clinical practice. The Charles Drew University has
established a national reputation for translational research that
addresses the health disparities and social issues that strike hardest
and deepest among urban and minority populations.
HEALTH RESOURCES AND SERVICES ADMINISTRATION
Title VII Health Professions Training Programs.--The health
professions training programs administered by the Health Resources and
Services Administration (HRSA) are the only Federal initiatives
designed to address the longstanding under representation of minorities
in health careers. HRSA's own report, ``The Rationale for Diversity in
the Health Professions: A Review of the Evidence,'' found that minority
health professionals disproportionately serve minority and other
medically underserved populations, minority populations tend to receive
better care from practitioners of their own race or ethnicity, and non-
English speaking patients experience better care, greater comprehension
and greater likelihood of keeping follow-up appointments when they see
a practitioner who speaks their language. Studies have also
demonstrated that when minorities are trained in minority health
professions institutions, they are significantly more likely to: 1)
serve in medically underserved areas, 2) provide care for minorities
and 3) treat low-income patients.
Minority Centers of Excellence.--The purpose of the COE program is
to assist schools, like Charles Drew University, that train minority
health professionals, by supporting programs of excellence. The COE
program focuses on improving student recruitment and performance;
improving curricula and cultural competence of graduates; facilitating
faculty and student research on minority health issues; and training
students to provide health services to minority individuals by
providing clinical teaching at community-based health facilities. For
fiscal year 2014, the funding level for COE should be $24.602 million.
Health Careers Opportunity Program.--Grants made to health
professions schools and educational entities under HCOP enhance the
ability of individuals from disadvantaged backgrounds to improve their
competitiveness to enter and graduate from health professions schools.
HCOP funds activities that are designed to develop a more competitive
applicant pool through partnerships with institutions of higher
education, school districts, and other community based entities. HCOP
also provides for mentoring, counseling, primary care exposure
activities, and information regarding careers in a primary care
discipline. Sources of financial aid are provided to students as well
as assistance in entering into health professions schools. For fiscal
year 2014, the HCOP funding level of $22.133 million is recommended.
NATIONAL INSTITUTES OF HEALTH
National Institute on Minority Health and Health Disparities.--The
NIMHD is charged with addressing the longstanding health status gap
between under-represented minority and non minority populations. The
NIMHD helps health professional institutions to narrow the health
status gap by improving research capabilities through the continued
development of faculty, labs, telemedicine technology and other
learning resources. The NIMHD also supports biomedical research focused
on eliminating health disparities and developed a comprehensive plan
for research on minority health at NIH. Furthermore, the NIMHD provides
financial support to health professions institutions that have a
history and mission of serving minority and medically underserved
communities through the COE program and HCOP. For fiscal year 2014, an
increase proportional to NIH's increase is recommended for NIMHD as
well as additional FTEs.
Research Centers at Minority Institutions.--RCMI, now at NIMHD, has
a long and distinguished record of helping institutions like The
Charles Drew University develop the research infrastructure necessary
to be leaders in the area of translational research focused on reducing
health disparities research. Although NIH has received some budget
increases over the last 5 years, funding for the RCMI program has not
increased by the same rate. Therefore, the funding for this important
program grow at the same rate as NIH overall in fiscal year 2014.
DEPARTMENT OF HEALTH AND HUMAN SERVICES
Office of Minority Health.--Specific programs at OMH include:
assisting medically underserved communities, supporting conferences for
high school and undergraduate students to interest them in health
careers, and supporting cooperative agreements with minority
institutions for the purpose of strengthening their capacity to train
more minorities in the health professions. For fiscal year 2014, I
recommend a funding level of $65 million for OMH to support these
critical activities. Additionally, I recommend that this Committee
ensures that OMH continues with its grant-making authority, as this is
one of the chief avenues by which it is able to impact the scourge of
disparities in our communities.
DEPARTMENT OF EDUCATION
Strengthening Historically Black Graduate Institutions.--The
Department of Education's Strengthening Historically Black Graduate
Institutions program (Title III, Part B, Section 326) is extremely
important to CDU and other minority serving health professions
institutions. The funding from this program is used to enhance
educational capabilities, establish and strengthen program development
offices, initiate endowment campaigns, and support numerous other
institutional development activities. In fiscal year 2014, an
appropriation of $65 million is suggested to continue the vital support
that this program provides to historically black graduate institutions.
CONCLUSION
Despite all the knowledge that exists about racial/ethnic, socio-
cultural and gender-based disparities in health outcomes, the gap
continues to widen. Not only are minority and underserved communities
burdened by higher disease rates, they are less likely to have access
to quality care upon diagnosis. As you are aware, in many minority and
underserved communities preventative care and research are inaccessible
either due to distance or lack of facilities and expertise. As noted
earlier, in just one underserved area, South Los Angeles, the number
and distribution of beds, doctors, nurses and other health
professionals are as parlous as they were at the time of the Watts
Rebellion, after which the McCone Commission attributed the so-named
'Los Angeles Riots' to poor services--particularly access to
affordable, quality healthcare. The Charles Drew University has proven
that it can produce excellent health professionals who 'get' the
mission--years after graduation they remain committed to serving people
in the most need. But, the university needs investment and committed
increased support from Federal, State and local governments and is
actively seeking foundation, philanthropic and corporate support.
Even though institutions like The Charles Drew University are
ideally situated (by location, population, community linkages and
mission) to study conditions in which health disparities have been well
documented, research is limited by the paucity of appropriate research
facilities. With your help, the Life Sciences Research Facility will
translate insight gained through research into greater understanding of
disparities and improved clinical outcomes. Additionally, programs like
Title VII Health Professions Training programs will help strengthen and
staff facilities like our Life Sciences Research Facility.
We look forward to working with you to lessen the huge negative
impact of health disparities on our Nation's increasingly diverse
populations, the economy and the whole American community.
Mr. Chairman, thank you again for the opportunity to present
testimony on behalf of the Charles Drew University. It is indeed an
honor.
______
Prepared Statement of the Children's Environmental Health Network
We thank Chairman Reed and Ranking Member Murkowski for this
opportunity and for your ongoing concern about environmental health
risks to children. Our statement focuses on key programs and activities
that safeguard the health and the future of all of our children. Today
we are addressing activities of two agencies that are critical to
children's environmental health and are within the subcommittee's
jurisdiction:
--Centers for Disease Control and Prevention, especially the National
Center for Environmental Health/Agency for Toxic Substances and
Disease Registry and related programs:
--Healthy Homes and Lead Poisoning Prevention Program
--National Asthma Control Program
--National Environmental Public Health Tracking Program
--Environmental Health Laboratory
--Healthy Community Design Initiative (HCDI)
--Pediatric Environmental Health Specialty Units (PEHSUs)
--National Institute of Environmental Health Sciences (NIEHS), an
Institute of the National Institutes of Health (NIH) that has
as its mission discovering how the environment affects people
in order to promote healthier lives. CEHN is especially
interested in NIEHS' Children's Environmental Health Research
Centers of Excellence.
The Children's Environmental Health Network (CEHN) is a national
organization created to protect the developing child from environmental
health hazards and promote a healthy environment.
Investments in programs that protect and promote children's health
will be repaid by healthier children with brighter futures. For
example, removing lead in gasoline has saved the U.S. an estimated $200
billion each year since 1980 in the form of higher IQs for that year's
newborns. Protecting our children--those born as well as those yet to
be born--from environmental hazards is truly a national security issue.
Our Nation's future will depend upon its future leaders. When we
protect children from harmful chemicals in their environment, we help
to assure that they will reach their full potential. We have a
responsibility to our Nation's children, and to the Nation that they
will someday lead, to provide them with a healthy environment.
Additionally, American competiveness depends on having healthy educated
children who grow up to be healthy productive adults. Yet, growing
numbers of our children are diagnosed with chronic and developmental
illnesses and disabilities such as obesity, asthma, learning
disabilities, and autism. A child's environment plays a role in these
chronic conditions and contributes to the distressing possibility that
today's children may be the first generation to see a shorter life
expectancy than their parents due to poor health. Thus it is vital that
the Federal programs and activities that protect children from
environmental hazards receive adequate resources.
We strongly urge the Committee to take a balanced approach to
deficit reduction that does not include further cuts to children's
environmental health programs. Key programs in your jurisdiction, which
CEHN urges you to support, include:
Centers for Disease Control and Prevention (CDC).--As the Nation's
leader in public health promotion and disease prevention, the CDC
should receive top priority in Federal funding. CDC continues to be
faced with unprecedented challenges and responsibilities. CEHN applauds
your support for CDC in past years and urges you to support a funding
level of $7.8 billion for CDC's core programs in fiscal year 2014.
The National Center for Environmental Health (NCEH) is particularly
important to protecting the environmental health of young children.
NCEH's programs are key national assets. Yet, since fiscal year 2009,
NCEH funding has been cut approximately 25 percent while, as mentioned
above, environment plays a role in the cause, prevention, or mitigation
of today's pediatric epidemics of obesity, asthma, learning
disabilities, and autism.
Agency for Toxic Substances and Disease Registry (ATSDR).--CEHN
urges the subcommittee to provide funding at or above the requested
levels for ATSDR activities. ATSDR uses the best science in taking
public health actions, such as site assessments and toxicological
profiles, to prevent harmful exposures and diseases of communities and
individuals related to toxic substances.
ATSDR understands that in communities faced with contamination of
their water, soil, air, or food, infants and children can be more
sensitive to environmental exposure than adults and that assessment,
prevention, and efforts to find remedies for exposures must focus on
children because of their vulnerability and importance to the Nation's
future. We support the full funding of ATSDR and the continuation of
their varied responsibilities.
We continue to be concerned about the elimination of Healthy Homes
and Lead Poisoning Prevention Program funding for State and local
programs in fiscal year 2012. The loss of vigilant surveillance,
primary prevention activities, and case management has jeopardized the
health of children living in homes where exposure to lead, asthma and
other illnesses related to rodent and insect infestation, chemical
exposures, and other risk factors is likely. We must sustain reducing
lead poisoning by supporting effective local and State efforts.
NCEH's National Asthma Control Program funds 36 States and
territories to conduct asthma surveillance, educate asthma patients,
families, and health care providers, and help health departments
eliminate potential asthma triggers. Now is the time to maintain our
commitment to asthma control, not cut funding.
The CDC's National Environmental Public Health Tracking Program
helps to track environmental hazards and the diseases they may cause
and to coordinate and integrate local, State and Federal health
agencies' collection of critical health and environmental data. Public
health officials need integrated health and environmental data so that
they can protect the public's health. This network currently operates
in 23 States and New York City to help public health officials and key
policymakers make better policy decisions to improve population health.
Participation in the tracking network development will decline further
under any further cuts and erase the progress we have made across the
country to better link data with public health action.
Pediatric Environmental Health Specialty Units.--Funded jointly by
the Agency for Toxic Substances and Disease Registry (ATSDR) and the
EPA, the Pediatric Environmental Health Specialty Units (PEHSUs) form a
valuable resource network, with a center in each of the U.S. Federal
regions. PEHSU professionals provide medical consultation to health
care professionals on a wide range of environmental health issues, from
individual cases of exposure to advice regarding large-scale community
issues. PEHSUs also provide information and resources to school, child
care, health and medical, and community groups to help increase the
public's understanding of children's environmental health, and help
inform policymakers by providing data and background on local or
regional environmental health issues and implications for specific
populations or areas. We urge the subcommittee to fully fund this
program in fiscal year 2014.
CEHN also strongly supports CDC's Environmental Health Laboratory
and the Healthy Community Design Initiative (HCDI). The HCDI provides
essential expert assistance and consultation across HHS and national
leadership on the impacts of the built environment on health including
physical activity levels.
National Institute of Environmental Health Science (NIEHS).--NIEHS
is the leading institute conducting research to understand how the
environment influences the development and progression of human
disease. NIEHS plays a vital role in our efforts to understand how to
protect children, whether it is identifying and understanding the
impact of substances that are endocrine disruptors or understanding
childhood exposures that may not affect health until decades later.
CEHN recommends that $717.7 million be provided for NIEHS' fiscal year
2014 budget.
Children's Environmental Health Research Centers of Excellence.--
The Children's Environmental Health Research Centers, jointly funded by
the NIEHS and the U.S. Environmental Protection Agency (EPA), play a
key role in providing the scientific basis for protecting children from
environmental hazards. With their modest budgets, which have been
unchanged for more than 10 years, these centers generate valuable
research. The scientific output of these centers has been outstanding.
Several Centers have established longitudinal cohorts, which have
resulted in valuable research results. The Network is concerned that as
a Center's multi-year grant ends and the Center is shuttered, these
cohorts and the invaluable information they can provide are being lost.
The Network urges the subcommittee to assure that NIEHS has the funding
and the direction to support Centers in continuing these cohorts. The
work of these Centers has also shown us that, in addition to research
regarding a specific pollutant or health outcome, research is
desperately needed in understanding the totality of the child's
environment--for example, all of the exposures the child experiences in
the home, school, and child care environment--and how to evaluate those
multiple factors. CEHN urges you to support these Centers to assure
they receive full funding and are extended and expanded as described
above.
In conclusion, healthier children with brighter futures will repay
investments in programs that protect and promote children's health, an
outcome we can all support.
Thank you for the opportunity to submit this testimony.
______
Prepared Statement of the Coalition of EPSCoR/IDeA States
Mr. Chairman and members of the subcommittee; thank you for the
opportunity to submit this statement regarding fiscal year 2014 funding
for the National Institutes of Health's Institutional Development Award
or ``IDeA'' Program. The IDeA program is supported by NIH's National
Institute of General Medical Sciences (NIGMS), and was authorized by
the 1993 NIH Revitalization Act (Public Law 103-43). I submit this
testimony on behalf of the Coalition of EPSCoR/IDeA States \1\ and LSU,
and respectfully request that this committee recommend that the IDeA
program be funded in fiscal year 2014 at $310 million.
The National Institutes of Health's (NIH) Institutional Development
Award Program (IDeA) was established in 1993 to broaden the geographic
distribution of NIH funding for biomedical and behavioral research. The
IDeA program funds only merit-based, peer-reviewed research that meets
NIH research objectives. The program fosters health-related research
and enhances the competitiveness of investigators at institutions in 23
States and Puerto Rico. The program also serves unique populations,
such as rural and medically underserved communities, in these States.
The IDeA program has two key components: Centers of Biomedical Research
Excellence (COBRE) and IDeA Networks of Biomedical Research Excellence
(INBRE). COBRE programs build multi-disciplinary research centers with
a thematic scientific focus. Junior investigators graduate from the
program after they obtain NIH competitive funding on their own. INBRE
programs enhance biomedical research capacity in primarily
undergraduate institutions in alliance with LSU, as a major research
institution in Louisiana. These two programs play complementary roles
in developing research capability and human capital in biomedical
fields in Louisiana and the rest of the IDeA States.
Impact of the IDeA Program on Louisiana
Louisiana leads all the EPSCoR/IDeA States in successfully
competing for COBRE and INBRE grants. Ten different COBRE grants and
one INBRE Center grant have been funded in the last 10 years totaling
more than $200 million dollars. The Louisiana INBRE is led by the LSU
in Baton Rouge as the flagship institution, which coordinates the
training of scientists from a number of primarily undergraduate
institutions in Louisiana such as the University of Louisiana in
Monroe, LSU-Shreveport, Southern University in Baton Rouge, Xavier
University in New Orleans, and Louisiana-Tech University in Ruston. All
other Louisiana universities participate in the INBRE program through
the summer research program. These students and faculty are trained at
major research facilities around the State including: LSU, Pennington
Biomedical Research Center, Tulane Medical Center in New Orleans, and
the LSU Health Sciences Centers in New Orleans and Shreveport. The
INBRE program provides opportunities via collaboration with all
Louisiana-based COBRE programs, therefore creating a highly regarded
network of life scientists throughout Louisiana.
The Louisiana success in COBRE funding has been focused on highly
important areas of research of particular significance to the health of
the citizens of Louisiana. These research areas include: (1) obesity
and cardiovascular health (COBREs at Pennington Biomedical Research
Center in Baton Rouge, LSU Health Sciences Center in New Orleans, and
Tulane University in New Orleans); (2) cancer research (COBREs at
Tulane University and LSU Health Sciences Center in Shreveport; (3)
neurosciences (COBRE at LSU Health Sciences in New Orleans); (4)
infectious disease research (COBRE at the LSU School of Veterinary
Medicine and Tulane National Primate Research Center); (5) obesity and
diabetes (COBRE at Pennington Biomedical Research Center in Baton
Rouge); (6) aging research (COBRE at Tulane University); and (7) oral
health (COBRE at the LSU School of Dentistry in New Orleans). Recently,
special COBRE funding was awarded to Louisiana for the establishment of
the Louisiana Clinical & Translational Science Center (LACaTS)
involving all biomedical research and medical training programs in
Louisiana working together to translate research findings to improve
clinical care. Specifically, this collaborative network of scientists
and clinicians focuses on the prevention, care and research of chronic
diseases in the underserved population of Louisiana and the Nation.
This COBRE Clinical and Translational Research award (COBRE-CTR) is led
by the Pennington Biomedical Research Center in Baton Rouge.
The COBRE and INBRE Project grants require the presence of senior
mentors for junior investigators including students, postdoctoral
fellows and junior faculty. The COBRE and INBRE funding has been a key
factor in the retention of well-funded investigators serving as
principal investigators or mentors in each program.
Total economic impact for Louisiana stemming from the IDeA program
is approximately $300 million, when taking into account the presence of
senior researchers that have been retained in Louisiana. This amounts
to a total economic impact of $600 million based on an economic impact
multiplier of 2. Importantly, the IDeA funding has enabled the
formation of a Louisiana-wide network of life scientists, opening up
new collaborations and unsurpassed training opportunities for all
students and faculty. The Louisiana Optical Network Initiative (LONI),
funded by State funds, has enabled direct connectivity and
communication among all COBRE and INBRE recipients through the INBRE-
led access grid network; allowing remote training, sharing of seminar
speakers and other training functions across Louisiana. IDeA funding
has impacted the teaching and training of more than 1000 researchers
and students in Louisiana.
While IDeA was authorized by the 1993 NIH Revitalization Act
(Public Law 103-43), sizable increases in funding only began in fiscal
year 2000. The program then grew rapidly, due in large part to the
thoughtful actions of this subcommittee. This funding permitted the
initiation of the COBRE and INBRE, which have been crucial to the
success of the program. On behalf of the Coalition and LSU, I want to
express gratitude to this subcommittee for the efforts it has made over
the years to provide increased funding for IDeA, in particular this
committee's work to ensure the successful inclusion of a $50 million
increase for the program in fiscal year 2012. I hope that you will
continue to invest in this program, which is so important to almost
half of the States in the Union.
We request that this committee recommend the IDeA program be funded
in fiscal year 2014 at $310 million. As you know, the EPSCoR/IDeA
Coalition has maintained that IDeA program should constitute at least 1
percent of the total NIH budget. This level of funding would restore
and continue funding for COBRE and INBRE, provide funding for the COBRE
Clinical and Translational Research (CTR) program, and provide for co-
funding opportunities which allow researchers and institutions to merge
with the overall national biomedical research community.
Over 22 percent of the Nation's population live in the EPSCoR/IDeA
States, yet in fiscal year 1999, the year before COBRE grants were
initiated, the 23 IDeA States and Puerto Rico received a total of $596
million from NIH. And that is why the IDeA program is so important. It
is helping to ensure that all regions of the country participate in
biomedical research and education. Citizens from all States should have
the opportunity to benefit from the latest innovations in health care,
which are most readily available in centers of biomedical research
excellence.
To put the value of the IDeA investment into perspective, the
overall fiscal year 2012 IDeA budget, $276.48 million, is only 42
percent of the $645.3 million in NIH funding that Johns Hopkins
University alone, in a non-IDeA State, received in fiscal year 2011. In
fiscal year 2011, the top seven States with NIH funding received over a
$1 billion each, and California alone received over $3.5 billion. Given
this, $310 million for 23 States and Puerto Rico seems more than
reasonable.
On behalf of the EPSCoR/IDeA Coalition, LSU and our partner
institutions across Louisiana, I thank the subcommittee for the
opportunity to submit this testimony.
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\1\ Alabama, Alaska, Arkansas, Delaware, Hawaii, Idaho, Iowa,
Kansas, Kentucky, Louisiana, Maine, Mississippi, Montana, Nebraska,
Nevada, New Hampshire, New Mexico, North Dakota, Oklahoma, Puerto Rico,
Rhode Island, South Carolina, South Dakota, Tennessee, Utah, Vermont,
West Virginia, and Wyoming.
States in italic letters are eligible for the IDeA program. All of
the States listed above are also eligible for the EPSCoR program.
---------------------------------------------------------------------------
______
Prepared Statement of the Coalition for Usher Syndrome Research
PARENT OF 12 YEAR OLD TWINS WITH USHER SYNDROME, PARENT ADVOCATE
REPRESENTING THE COALITION FOR USHER SYNDROME RESEARCH AND INDIVIDUALS
WITH USHER SYNDROME
My name is Susie Trotochaud from the State of Georgia. I submit
testimony on behalf of the Coalition for Usher Syndrome Research to
respectfully request this committee encourage NIH funding of $20
million in fiscal year 2014 to promote more research into Usher
Syndrome.
Usher Syndrome is the number one cause of deaf-blindness. Deaf-
Blindness. Imagine being unable to hear my words and unable to see me.
Silence and darkness. In the United States, it is estimated that about
45,000 people have this rare genetic disorder. Two of them are my
children, Cory and Joanie Dorfman.
Cory and Joanie were born 8 weeks early. Although they spent
several weeks in ICU fighting to learn basic survival skills, like
breathing and eating, these would not be their greatest challenges.
Before they were released from the hospital, they were given a newborn
hearing screening. It was determined that they were both profoundly
deaf. As we struggled to understand what this meant and how this could
have happened, I realized that they would never be able to hear me say
``I love you'' and I would never hear those sweet words from their
lips. The sounds of our life, children laughing, singing, school plays,
graduations, celebrations, were suddenly silenced.
Our heartache changed to hope when we found out about the cochlear
implant. By 12 months, Cory and Joanie were implanted and began hearing
their first sounds. By 1-1/2 years, they had said their first words,
and by 3 years, we realized that they could be mainstreamed, go on
through high school and even college, just like their peers. Although
they would always have to work a little harder, the sounds of
opportunity returned to our lives. And I remember my husband saying to
me at that time, ``At least they're not blind.''
But about a year ago, that all changed. After my daughter entered a
darkened hallway in a restaurant and asked me where the bathroom was,
when the door was literally four feet in front of her, we became
concerned. When she gingerly stepped down a pathway at night, seemingly
feeling her way with her feet, we knew we had a problem. Many months of
extensive testing and waiting confirmed what we, by then, already knew.
Joanie had Type I Usher Syndrome. Reading the description of Type I
Usher was like reading her biography: Born profoundly deaf, delayed
development especially walking, balance issues, and loss of night
vision beginning at around 10 years of age. What would follow would be
loss of peripheral vision leading to tunnel vision, and eventually
blindness. With no intervention, my 12 year old daughter will be blind
by 20. And although my son currently has less vision issues, testing
confirms he also has Usher. He may retain some of his vision into his
30s.
That's the thing with Usher. It strikes in varying timeframes. Type
I, like with my children, is characterized by profound deafness at
birth followed by blindness in early adolescence; Type II individuals
may have moderate to severe hearing loss followed by blindness; and
Type III experience loss of hearing and sight throughout their lives.
How quickly and how completely each person losses their vision also
varies, but the way it happens is consistent. Night blindness, then
peripheral vision is lost as darkness closes in on their sight. Usher
is a rollercoaster ride of loss, grief, adjustment, and loss again that
never ends as one more setback always lies around the corner.
People with Usher Syndrome, like Cory and Joanie, have worked hard
to overcome some of their hearing challenges by using cochlear
implants, hearing aids, sign language and more. But how do you overcome
the loss of sight? Think of yourself, sitting here communicating by
sign, knowing that you are losing your vision, knowing you are about to
lose your way of communicating with the world around you. Frightening,
isn't it?
Like you, my hopes and dreams for my children have always been that
they grow up happy, do well in school, attend good colleges, get
meaningful jobs and give back to their community. But the reality we
are facing is that 8 out of 10 deaf-blind people are unemployed, not to
mention the physical and emotional hardships, the stereotypes of being
deaf-blind, the loss of productivity and ability to do a job, ultimate
depression, and perhaps even suicide.
Add to that the reality that our country spends an estimated $27
billion annually in care and support services for people with major
visual disorders. That doesn't even include the costs associated with
hearing impairment.
Those are statistics; people with Usher aren't. Since joining the
Coalition for Usher Syndrome Research, I have spoken with or met dozens
of people who are determined, focused, and working every day to help
themselves, their loved one, or in some cases complete strangers,
figure out how to treat this syndrome. Usher genes are complex, long
protein cells which require significant investment in research if we
are ever to find a cure or treatment. We can't do it alone.
Through the Coalition, we have brought the Usher community and
researchers together by:
--Establishing a registry of individuals with Usher Syndrome which is
available for research or clinical trials at no cost. Our
registry currently has families from each of the 50 States and
23 countries.
--Sponsoring annual family conferences, webinars and monthly
conferences that provide information and support to all of
those living with Usher.
--Paving the way for an International Symposium on Usher Syndrome
Research in 2014 to develop a roadmap for future research
projects to bring us closer to viable clinical trials.
With this in place, we have begun bringing brilliant researchers
together who are working on developing treatments every day.
Researchers like those in Oregon and Pennsylvania who are working on
gene therapy treatments, one of which began clinical trials this year.
Researchers in Louisiana, who have been able to rescue the hearing in
mice with Usher Syndrome using a drug therapy that holds promise for
rescuing vision, as well. Researchers in Iowa, California, Nebraska,
Massachusetts, Florida, Texas, and many other States, who are
collaborating with each other and with families through the Coalition
to advance all kinds of Usher syndrome research.
But still this is not enough. My daughter, Joanie, will be blind
within 10 years; my son, Cory, in 20. Jessica, a 17-year old with
Usher, remains hopeful that something will help her retain her vision
before she loses it at 30. Megan, a promising architect, has already
altered her career goals as her vision has begun to slowly fade and
every day she prays for something to help. Moira has lived well into
her adult life working harder than everyone else to compete in a
hearing and seeing world, but complete blindness is now taking away her
ability to lip read and communicate with her friends and family.
We cannot help any of these people or the tens of thousands who
have Usher or countless others that will be born in the future with
this devastating genetic disorder without Federal support. There are
dozens of different mutations that cause Usher Syndrome and the pace of
research is slowed dramatically by the lack of researchers and funding.
The infrastructure is there to find treatments, but the significant
financial support is not. We believe that $20 million in support this
year and an increase of that amount over the next several years would
lead to viable treatments for those with Usher Syndrome within a
decade. We are asking you to supply this last critical resource to help
us find a cure.
When you review the report on categorical spending by the NIH,
Usher Syndrome is not even listed. Rare diseases with similar incident
rates average around $50 million annually. These investments have
resulted in significant discoveries for these diseases, and there is
reason to believe that we can see these same results or better for
Usher Syndrome. The researchers are there, waiting to discover what we
only dare dream of: An opportunity to allow deaf children and adults
who are going blind, a chance to see.
I will leave you with the words of Helen Keller. ``It is a terrible
thing to see, but have no vision.'' I hope that this committee will
have the vision to see the opportunities before them. Together, we can
find a way to end deaf-blindness. I thank you on behalf of all those
with Usher Syndrome, their families, and most importantly to me, my
children, Cory and Joanie.
______
Prepared Statement of the Coalition of Northeastern Governors
As the subcommittee begins to develop the fiscal year 2014 Labor,
Health and Human Services, Education, and Related Agencies
appropriations bill, the Coalition of Northeastern Governors (CONEG)
urges you to fund the Low Income Home Energy Assistance Program
(LIHEAP) at the authorized level of $5.1 billion but no less than $4.7
billion in the core block grant program. The Governors appreciate the
subcommittee's continued support for LIHEAP, and recognize the
difficult fiscal challenges facing Congress this year. However, the
economic challenges facing the Nation's low-income households have made
this program more essential than ever. Adequate, predictable and timely
Federal funding is vital for LIHEAP to assist the vulnerable, low-
income households who struggle to pay increased home energy bills.
Therefore, we urge the subcommittee to provide the fiscal year 2014
funds in a manner consistent with the LIHEAP statutory objective: ``to
assist low-income households, particularly those with the lowest
incomes that pay a high proportion of household income for home energy,
primarily in meeting their immediate home energy needs.
LIHEAP is a vital safety net for the most vulnerable citizens in
every region of the Nation: the elderly, disabled, and families with
young children struggling to pay for the basic necessity of home
energy. According to the National Energy Assistance Directors'
Association (NEADA), 8.9 million households received heating and
cooling assistance in fiscal year 2012. Nationwide, the majority of
LIHEAP households have at least one member defined as ``vulnerable,''
and many of these households are not likely to benefit from the modest
improvements in national economic and employment patterns. Moreover,
approximately 20 percent of LIHEAP households contain at least one
member who served this country in the military. LIHEAP is a resource
that States across the country are able to use to assist vulnerable
households in paying a portion of their heating bills in the cold
winter months and a portion of their electricity bills for cooling in
the hot months.
Households in the Northeast face some of the Nation's highest home
heating bills due to the extended winter heating season and heating
fuel prices that typically exceed national averages regardless of the
fuel used. Recent trends in residential heating fuel prices suggest
that low-income households in the Northeast will continue to experience
a heavy energy burden. According to the recent Energy Information
Administration (EIA) Winter Fuels Outlook, Northeast households are
more likely to face higher natural gas prices than other regions of the
Nation. While delivered fuels, such as heating oil and propane, are
used nationwide, Northeast households--more than any other region of
the country--are dependent upon these expensive delivered fuels,
particularly in the many areas where there is limited or no access to
natural gas service. In the Northeast, 30 percent of households rely
upon delivered fuels, and they account for approximately 80 percent of
the homes nationwide that use home heating oil. When prices rise, these
households are particularly vulnerable. Low-income households that use
delivered fuels are less likely to have the option of payment plans,
access to utility assistance programs, and the protection of utility
service shut-off moratoria during the heating season. If LIHEAP funds
are not available to these households, the fuel delivery truck simply
does not come.
According to EIA's current data, residential heating oil prices
have been stable over the past two heating seasons, but at the
historically high average price of approximately $4.00 per gallon--a
price that is almost 30 percent higher than the five year average
price. At this price, and with the more typical winter temperatures
experienced by the region, EIA anticipates that expenditures for
heating oil this heating season could increase by 32 percent from last
winter. In the past 2 years, the average price of residential heating
oil in the Northeast has increased 43 percent--from an average of $2.89
per gallon in February 2010 to an average of $4.15 per gallon in
February 2013. During the same period, the annual LIHEAP funding level
has declined by 30 percent--from $5.1 billion in fiscal year 2010 to
approximately $3.3 billion in fiscal year 2013.
LIHEAP is the foundation of efforts to provide immediate,
meaningful assistance to low-income households, many living on modest,
fixed incomes. Most LIHEAP assistance is targeted to households whose
income is close to or below 150 percent of the Federal poverty level,
which for a two-person household is $23,265 in 2013. These households
spend a disproportionate amount of their income on home energy, often
over three times more than non-low-income households. LIHEAP not only
helps households better manage and pay home energy bills, it protects
the health and safety of the elderly, young children and the disabled.
Without adequate resources to pay home heating bills, these vulnerable
households may resort to unsafe and dangerous heating sources such as
ovens and space heaters. In the summer, these populations are
particularly susceptible to heat-related illness and even death.
While LIHEAP funding has been reduced by more than 30 percent since
fiscal year 2010, the need for the program continues to grow
nationwide. States have faced significant challenges in trying to
stretch scarce LIHEAP dollars as far as possible while still providing
a meaningful benefit to those households most in need of assistance.
States have worked with utilities to develop payment plans to reduce
arrearages and lessen the prospect of utility shut-offs after the
heating season ends. They have negotiated with fuel dealers to receive
discounts on deliverable fuels, and have entered into agreements to
purchase fuel in the summer when prices are lowest. Some Northeast
States have also stretched their own limited budgets to provide
supplemental LIHEAP funds or to leverage Federal dollars. Even after
taking significant cost-cutting steps, States have had to take actions
such as tightening program eligibility, closing the program early, and
reducing benefit levels. The most recent funding reductions, coming as
the heating season winds down and utility shut-off moratoriums expire,
have created additional challenges. The potential result is a loss of
funding for benefits to pay down arrearages, as well as inadequate
staff to assist those households facing utility shut-offs to find
alternative arrangements.
In summary, the CONEG governors appreciate the subcommittee's
continued support for LIHEAP, and urge you to fund the program at the
authorized level of $5.1 billion but no less than $4.7 billion in the
core block grant program for fiscal year 2014.
______
Prepared Statement of the College of Veterinary Medicine, Nursing &
Allied Health
SUMMARY OF FISCAL YEAR 2014 RECOMMENDATIONS
_______________________________________________________________________
1) Title VII Health Professions Training Programs:
-- $24.602 million for thE Minority Centers of Excellence.
-- $22.133 million for the Health Careers Opportunity Program.
2) Increased support for the National Institutes of Health's
National Institute on Minority Health and Health Disparities.
3) $32 billion for the National Institutes of Health.
-- Proportional funding increase for the Natioanl Institute on
Minority Health and Health Disparities.
-- Proportional funding for Research Centers for Minority
Institutions.
4) $65 million for the Department of Health and Human Services'
Office of Minority Health.
5) $65 million for the Department of Education's Strengthening
Historically Black Graduate Institutions Program.
_______________________________________________________________________
Mr. Chairman and members of the subcommittee, thank you for the
opportunity to present my views before you today. I am Dr. Tsegaye
Habtemariam, dean of the College of Veterinary Medicine, Nursing, and
Allied Health at Tuskegee University. The mission (purpose) of Research
and Advanced Studies at the College of Veterinary Medicine, Nursing &
Allied Health (CVMNAH) is to transform trainees into ambassadors of the
Tuskegee tradition to benefit Man and animals. Such a tradition is
honed in the ``one medicine-one health'' concept that for decades has
guided our academic mission, to expand biosciences and create bridges
between veterinary medicine, agricultural and food sciences on one side
and human health and welfare on the other.
Mr. Chairman, I speak for our institutions, when I say that the
minority health professions institutions and the Title VII Health
Professionals Training programs address a critical national need.
Persistent and severe staffing shortages exist in a number of the
health professions, and chronic shortages exist for all of the health
professions in our Nation's most medically underserved communities.
Furthermore, even after the landmark passage of health reform, it is
important to note that our Nation's health professions workforce does
not accurately reflect the racial composition of our population. For
example while blacks represent approximately 15 percent of the U.S.
population, only 2-3 percent of the Nation's health professions
workforce is black. Mr. Chairman, I would like to share with you how
your committee can help Tuskegee continue our efforts to help provide
quality health professionals and close our Nation's health disparity
gap.
There is a well established link between health disparities and a
lack of access to competent healthcare in medically underserved areas.
As a result, it is imperative that the Federal Government continue its
commitment to minority health profession institutions and minority
health professional training programs to continue to produce healthcare
professionals committed to addressing this unmet need--even in austere
financial times.
An October 2006 study by the Health Resources and Services
Administration (HRSA)--during the Bush Administration--entitled ``The
Rationale for Diversity in the Health Professions: A Review of the
Evidence'' found that minority health professionals serve minority and
other medically underserved populations at higher rates than non-
minority professionals. The report also showed that; minority
populations tend to receive better care from practitioners who
represent their own race or ethnicity, and non-English speaking
patients experience better care, greater comprehension, and greater
likelihood of keeping follow-up appointments when they see a
practitioner who speaks their language. Studies have also demonstrated
that when minorities are trained in minority health profession
institutions, they are significantly more likely to: 1) serve in rural
and urban medically underserved areas, 2) provide care for minorities
and 3) treat low-income patients.
As you are aware, Title VII Health Professions Training programs
are focused on improving the quality, geographic distribution and
diversity of the healthcare workforce in order to continue eliminating
disparities in our Nation's healthcare system. These programs provide
training for students to practice in underserved areas, cultivate
interactions with faculty role models who serve in underserved areas,
and provide placement and recruitment services to encourage students to
work in these areas. Health professionals who spend part of their
training providing care for the underserved are up to 10 times more
likely to practice in underserved areas after graduation or program
completion.
In fiscal year 2014, funding for the Title VII Health Professions
Training programs must be robust, especially the funding for the
Minority Centers of Excellence (COEs) and Health Careers Opportunity
Program (HCOPs). In addition, the funding for the National Institutes
of Health (NIH)'s National Institute on Minority Health and Health
Disparities (NIMHD), as well as the Department of Health and Human
Services (HHS)'s Office of Minority Health (OMH), should be preserved.
Minority Centers of Excellence.--COEs focus on improving student
recruitment and performance, improving curricula in cultural
competence, facilitating research on minority health issues and
training students to provide health services to minority individuals.
COEs were first established in recognition of the contribution made by
four historically black health professions institutions to the training
of minorities in the health professions. Congress later went on to
authorize the establishment of ``Hispanic'', ``Native American'' and
``Other'' Historically black COEs. For fiscal year 2014, I recommend a
funding level of $24.602 million for COEs. Additionally, I encourage
the Committee direct HRSA to re-evaluate the funding mechanism for the
original four COEs, as it does not always lead to funding based on the
merit of an institution's proposal.
Health Careers Opportunity Program (HCOP).--HCOPs provide grants
for minority and non-minority health profession institutions to support
pipeline, preparatory and recruiting activities that encourage minority
and economically disadvantaged students to pursue careers in the health
professions. Many HCOPs partner with colleges, high schools, and even
elementary schools in order to identify and nurture promising students
who demonstrate that they have the talent and potential to become a
health professional. For fiscal year 2014, I recommend a funding level
of $22.133 million for HCOPs.
NATIONAL INSTITUTES OF HEALTH
National Institute on Minority Health and Health Disparities.--The
National Institute on Minority Health and Health Disparities (NIMHD) is
charged with addressing the longstanding health status gap between
minority and nonminority populations. The NIMHD helps health
professions institutions to narrow the health status gap by improving
research capabilities through the continued development of faculty,
labs, and other learning resources. The NIMHD also supports biomedical
research focused on eliminating health disparities and develops a
comprehensive plan for research on minority health at the NIH.
Furthermore, the NIMHD provides financial support to health professions
institutions that have a history and mission of serving minority and
medically underserved communities through its Centers of Excellence
program. For fiscal year 2014, I recommend funded increases
proportional with the funding of the overall NIH, with increased FTEs.
Research Centers at Minority Institutions.--The Research Centers at
Minority Institutions program (RCMI), newly moved to the National
Institute on Minority Health and Health Disparities has a long and
distinguished record of helping our institutions develop the research
infrastructure necessary to be leaders in the area of health
disparities research. Although NIH has received unprecedented budget
increases in recent years, funding for the RCMI program has not
increased by the same rate. Therefore, the funding for this important
program grow at the same rate as NIH overall in fiscal year 2014.
DEPARTMENT OF HEALTH AND HUMAN SERVICES
Office of Minority Health.--Specific programs at OMH include:
assisting medically underserved communities with the greatest need in
solving health disparities and attracting and retaining health
professionals; assisting minority institutions in acquiring real
property to expand their campuses and increase their capacity to train
minorities for medical careers; supporting conferences for high school
and undergraduate students to interest them in health careers, and
supporting cooperative agreements with minority institutions for the
purpose of strengthening their capacity to train more minorities in the
health professions.
The OMH has the potential to play a critical role in addressing
health disparities, but that role is only possible if this agency
continues to keep its grant-making authority. For fiscal year 2014, I
recommend a funding level of $65 million for the OMH.
DEPARTMENT OF EDUCATION
Strengthening Historically Black Graduate Institutions.--The
Department of Education's Strengthening Historically Black Graduate
Institutions (HBGI) program (Title III, Part B, Section 326) is
extremely important to AMHPS. The funding from this program is used to
enhance educational capabilities, establish and strengthen program
development offices, initiate endowment campaigns, and support numerous
other institutional development activities. In fiscal year 2014, an
appropriation of $65 million is suggested to continue the vital support
that this program provides to historically black graduate institutions.
Mr. Chairman, please allow me to express my appreciation to you and
the members of this subcommittee. With your continued help and support,
Tuskegee University's College of Veterinary Medicine, Nursing, and
Allied Health , Title VII Health Professions Training programs and the
historically black health professions schools can help this country to
overcome health disparities. Congress must be careful not to eliminate,
paralyze or stifle the institutions and programs that have been proven
to work. CVMNAH seeks to close the ever widening health disparity gap.
If this subcommittee will give us the tools, we will continue to work
towards the goal of eliminating that disparity everyday.
Thank you, Mr. Chairman.
______
Prepared Statement of the College on Problems of Drug Dependence
Mr. Chairman and members of the subcommittee, thank you for the
opportunity to submit testimony to the subcommittee in support of the
National Institute on Drug Abuse. The College on Problems of Drug
Dependence (CPDD), a membership organization with over 800 members, has
been in existence since 1929. It is the longest standing group in the
United States addressing problems of drug dependence and abuse. The
organization serves as an interface among governmental, industrial and
academic communities maintaining liaisons with regulatory and research
agencies as well as educational, treatment, and prevention facilities
in the drug abuse field. CPDD also often works in collaboration with
the World Health Organization.
Recognizing that so many health research issues are inter-related,
CPDD requests that the subcommittee provide at least $32 billion for
the National Institutes of Health (NIH). Because of the critical
importance of drug abuse research for the health and economy of our
Nation, we also request that you provide a proportionate increase for
the National Institute on Drug Abuse in your Fiscal 2014 Labor, Health
and Human Services, Education and Related Agencies Appropriations bill.
Drug abuse is costly to Americans; it ruins lives, while tearing at
the fabric of our society and taking a huge financial toll on our
resources. Beyond the unacceptably high rates of morbidity and
mortality, drug abuse is often implicated in family disintegration,
loss of employment, failure in school, domestic violence, child abuse,
and other crimes. Placing dollar figures on the problem; smoking,
alcohol and illegal drug use results in an exorbitant economic cost on
our Nation, estimated at over $600 billion annually. We know that many
of these problems can be prevented entirely, and that the longer we can
delay initiation of any use, the more successfully we mitigate future
morbidity, mortality and economic burdens.
Over the past three decades, NIDA-supported research has
revolutionized our understanding of addiction as a chronic, often-
relapsing brain disease--this new knowledge has helped to correctly
situate drug addiction as a serious public health issue that demands
strategic solutions. By supporting research that reveals how drugs
affect the brain and behavior and how multiple factors influence drug
abuse and its consequences, scholars supported by NIDA continue to
advance effective strategies to prevent people from ever using drugs
and to treat them when they cannot stop.
NIDA supports a comprehensive research portfolio that spans the
continuum of basic neuroscience, behavior and genetics research through
medications development and applied health services research and
epidemiology. While supporting research on the positive effects of
evidence-based prevention and treatment approaches, NIDA also
recognizes the need to keep pace with emerging problems. We have seen
encouraging trends--significant declines in a wide array of youth drug
use--over the past several years that we think are due, at least in
part, to NIDA's public education and awareness efforts. However, areas
of significant concern, such as prescription drug abuse, remain and we
support NIDA in its efforts to find successful approaches to these
difficult problems.
The Nation's previous investment in scientific research to further
understand the effects of abused drugs on the body has increased our
ability to prevent and treat addiction. As with other diseases, much
more needs be done to improve prevention and treatment of these
dangerous and costly diseases. Our knowledge of how drugs work in the
brain, their health consequences, how to treat people already addicted,
and what constitutes effective prevention strategies has increased
dramatically due to support of this research. However, since the number
of individuals continuing to be affected is still rising, we need to
continue the work until this disease is both prevented and eliminated
from society.
We understand that the fiscal year 2014 budget cycle will involve
setting priorities and accepting compromise, however, in the current
climate we believe a focus on substance abuse and addiction, which
according to the World Health Organization account for nearly 20
percent of disabilities among 15-44 year olds, deserves to be
prioritized accordingly. We look forward to working with you to make
this a reality. Thank you for your support for the National Institute
on Drug Abuse.
______
Prepared Statement of the Consortium of Social Science Associations
Mr. Chairman and members of the subcommittee: The Consortium of
Social Science Associations (COSSA) welcomes the opportunity to comment
on the fiscal year 2014 Appropriations for the National Institutes of
Health (NIH), Centers for Disease Control and Prevention (CDC), and the
Agency for Healthcare Research and Quality (AHRQ).
COSSA is an advocacy group for the social and behavioral sciences
supported by 115 professional associations, scientific societies,
universities and research centers. COSSA serves as a bridge between the
academic research and Washington policy-making community. Our
organizations are appreciative of the subcommittee's and the Congress'
continued support of the NIH, CDC, and AHRQ. Strong, sustained funding
is essential to the national priorities of better health and economic
revitalization.
COSSA joins the Ad Hoc Group for Medical Research in requesting a
minimum appropriation of $32 billion for NIH for fiscal year 2014. As a
member of the CDC Coalition, COSSA requests $7.8 billion in funding for
CDC in fiscal year 2014. Lastly, we join the Friends of AHRQ in
recommending a funding level of $181.5 million for AHRQ in fiscal year
2014.
Social and Behavioral Science Research at the National Institutes of
Health
As this Committee knows, the mission of the NIH is to support
scientifically rigorous, peer/merit-reviewed, investigator-initiated
research, including basic and applied behavioral and social science
research. The fundamental understanding of how disease works, including
the impact of social environment on these disease processes, underpins
our ability to conquer devastating illnesses. And while Americans have
achieved very high levels of health over the past century and are
healthier than people in many other nations, according to the recently
released National Academies' report, U.S. Health in International
Perspective: Shorter Lives, Poorer Health, ``a growing body of research
suggests that the health of the U.S. population is not keeping pace
with the health of people in other economically advanced, high-income
countries.''
The behavioral and social sciences make important contributions to
the well-being of this Nation. Due in large part to the behavioral and
social science research sponsored by the NIH, we are now aware of the
enormous role behavior plays in our health. Though we have made
enormous progress toward achieving genetic control over disease,
knowledge of the behavioral influences on health will always be a
crucial component in our battles against the leading causes of
morbidity and mortality: obesity, heart disease, cancer, AIDS,
diabetes, age-related illnesses, accidents, substance abuse, and mental
illness.
As a result of the strong Congressional commitment to the NIH in
years past, our knowledge of the social and behavioral factors
surrounding chronic disease health outcomes is steadily increasing. The
NIH's behavioral and social science portfolio has emphasized the
development of effective and sustainable interventions and prevention
programs targeting those very illnesses that are the greatest threats
to our health, but the work is just beginning. This includes NIH's
support of economic research, specifically, research on the linkages
between socioeconomic status and health outcomes in the elderly and
achievement and health outcomes in children. This research has been an
integral part of the interdisciplinary science NIH has historically
supported. Accordingly, the agency's investment has yielded key data,
methodologies and substantive insights on some of the most important
and pressing issues facing the U.S. For example, NIH-funded surveys
such as the Health and Retirement Survey, the Panel Study of Income
Dynamics (PSID), parts of the National Longitudinal Survey of Labor
Market Experiences, and surveys on international aging and retirement
provide data necessary to monitor and detect changes in important
socioeconomic trends in health. This in turn allows NIH to support
research that will provide the greatest return on its investment when
it comes to the health of our citizens.
Social and behavioral scientists have made significant strides in
shedding light on the basic social and cultural structures and
processes that influence health. Social and cultural factors influence
health by affecting exposure and vulnerability to disease, risk-taking
behaviors, the effectiveness of health promotion efforts, and access
to, availability of, and quality of health care. Social and cultural
factors also play a role in shaping perceptions of and responses to
health problems and the impact of poor health on individuals' lives and
well-being. In addition, such factors contribute to understanding
societal and population processes such as current and changing rates of
morbidity, survival, and mortality.
Despite the dramatic contributions that behavioral and social
science research has made to date, much more remains to be understood
in the role behavioral and social factors play in disease and how to
use that knowledge to improve the Nation's health. Breakthroughs in the
behavioral and social sciences over the next 20 years will be critical
to addressing our most pressing public health challenges and
transforming health care.
The application of the results of basic research to the detection,
diagnosis, treatment and prevention of disease is the ultimate goal of
medical research. Ensuring a steady pipeline of basic research
discoveries while also supporting the translational efforts necessary
to bring the promise of this knowledge to fruition requires a sustained
investment in NIH.
Social and Behavioral Science Research at the Centers for Disease
Control and Prevention
As the country's leading health protection and surveillance agency,
the CDC works with State, local, and international partners to protect
Americans from infectious diseases; prevent the leading causes of
disease, disability, and death; protect Americans from natural and
bioterrorism threats; monitor health and ensure laboratory excellence;
keep Americans safe from environmental and work-related hazard; and
ensure global disease protection. To cite just one example of the
enormous strides the CDC is making in keeping America and the world
safe from disease, with adequate investment, the CDC expects to stop
all wild poliovirus transmissions by the end of 2014, as part of the
Global Polio Eradication Initiative.
Social and behavioral science plays a crucial role in helping the
CDC carry out its mission. Scientists from fields ranging from
psychology, sociology, anthropology, and geography to health
communications, social work, and demography work in every CDC Center to
design, analyze, and evaluate behavioral surveillance systems, public
health interventions, and health promotion and communication programs
using a variety of both quantitative and qualitative methods.
These scientists play a key role in the CDC's surveillance and
monitoring efforts, which collect and analyze data to better target
public health prevention efforts. For example, the Behavioral Risk
Factor Surveillance System, which collects data about Americans'
health-related risk behaviors and events, chronic health conditions,
and use of preventive services, is used to establish and track State
and local health objectives, plan health programs, implement disease
prevention and health promotion activities, and monitor trends.
Another vital contribution of the social and behavioral sciences to
CDC activities is in identifying and understanding health disparities.
Although the overall health of Americans has improved over the last
decades, differences in health based on race, ethnicity, gender,
income, geographical location, education level, disability status, and
sexual orientation persist. Rigorous, cross-disciplinary efforts are
needed to develop effective interventions to reduce these entrenched
disparities and inequities.
The social and behavioral sciences play an important role in the
evaluation of CDC programs. When programs conduct strong, practical
evaluations on a routine basis, the findings are better positioned to
inform their management and improve program effectiveness. Evaluating
public health programs tells us what is and isn't working and can help
policymakers make informed, evidence-based decisions on how to
prioritize in a resource-scarce environment.
The CDC is the home of the Nation's principal health statistics
agency, the National Center for Health Statistics (NCHS). NCHS collects
data on chronic disease prevalence, health care disparities, emergency
room use, teen pregnancy, infant mortality, causes of death and rates
of insurance, to name a few. It provides critical data on all aspects
of our health care system through data cooperatives and surveys that
serve as the gold standard for data collection around the world. Data
from NCHS surveys like the National Health Interview Survey (NHIS), the
National Health and Nutrition Examination Survey (NHANES) and the
National Vital Statistics System (NVSS) are used by agencies across the
Federal Government, State and local governments, public health
officials, Federal policymakers, and demographers, epidemiologists,
health services researchers, and other scientists.
Health Services Research at the Agency for Healthcare Research and
Quality
AHRQ's sole purpose is to improve health care in America. Just as
biomedical research helps us find cures for disease, the health
services research AHRQ supports helps find ways to cure our health care
system--improving its quality, safety, and efficiency for the benefit
of patients. AHRQ's research identifies what works and what doesn't in
health care to improve patient care and provide policymakers and other
health care leaders with the information needed to make critical health
care decisions.
AHRQ helps providers help patients. Americans want to take personal
responsibility for their health, and they rely on their doctors,
nurses, pharmacists and other health care providers for guidance in
making difficult choices. AHRQ's research generates valuable evidence
to help providers help patients make the right health care decisions
for themselves and their loved ones. For example, the American College
of Physicians used AHRQ-funded research to inform their recommendations
for treatment of type 2 diabetes. These evidence-informed
recommendations give physicians a foundation for describing what the
best care looks like, so patients can determine what the right care
might be for them.
AHRQ is keeping patients safe. The science funded by AHRQ ensures
patients receive high quality, appropriate care every time they walk
through the hospital, clinic, and medical office doors. AHRQ's research
provides the basis for protocols that prevent medical errors and reduce
hospital-acquired infections (HAI), and improve patient experiences and
outcomes. In just one example, AHRQ's evidence-based Comprehensive
Unit-based Safety Program to Prevent Healthcare-Associated Infections
(CUSP)--first applied on a large scale in 2003 across more than 100
ICUs across Michigan--saved more than 1,500 lives and nearly $200
million in the program's first 18 months. The protocols have since been
expanded to hospitals in all 50 States, the District of Columbia, and
Puerto Rico to continue the national implementation of this approach
for reducing HAIs.
AHRQ helps health care providers--from private practice physicians
to large hospital systems--understand how to deliver the best care most
efficiently. For example, AHRQ maintains the National Quality
Measurement Clearinghouse (NQMC) to provide health care providers,
health plans, delivery systems, and others with an accessible resource
for quality measures and a one-stop-shop for benchmarks on providing
more safe, effective and timely care. The breadth of evidence available
from AHRQ empowers health care providers to understand not just how
they compare to their peers, but also how to improve their performance
to be more competitive.
COSSA recognizes the tremendous challenges facing our Nation's
economy and acknowledges the difficult decisions that must be made to
restore our country's fiscal health. Nevertheless, we believe that
strong support for public health research is an essential part of the
solution to the Nation's economic restoration. Strengthening our
commitment to public health, through robust funding of the NIH, CDC,
and AHRQ is a critical element of ensuring the health and well-being of
the American people and our economy.
______
Prepared Statement of the Corporate Friends of the Centers for Disease
Control and Prevention (CDC)
My name is David Ratcliffe, and I am the Co-Chairman of the
Corporate Friends of the Centers for Disease Control and Prevention
(CDC), alongside Co-Chairman, John Rice of General Electric. I am
testifying in support of CDC's budget for fiscal year 2014 and
requesting that the Chairman and his colleagues on the Senate Labor,
Health and Human Services, Education and Related Agencies Subcommittee
Committee consider restoring CDC's budget authority to the fiscal year
2010 level of $6.39 billion. I am also asking the Committee to consider
allowing more flexibility for the Director of the CDC with his annual
budget.
Chairman Harkin, Ranking Member Moran, and distinguished members of
the subcommittee, it is my honor to submit a statement on behalf of the
Corporate Friends of CDC. My message to Congress is that, while cuts to
the Federal budget may be inevitable and indeed necessary, CDC should
not be targeted for disproportionately large cuts. CDC is our Nation's
designated health protection agency and an operating division of the
Department of Health and Human Services. We must protect CDC's core
mission of securing Americans from health threats, saving American
lives, and saving money by keeping Americans healthy.
As a Federal agency, CDC cannot and does not advocate or lobby on
its behalf. The Corporate Friends is a registered 501(c) 4 corporation
structured to provide advocacy and education efforts about CDC's
significance to our Nation's health and safety. As a former President
and CEO of Southern Company, I fully support CDC's operation as vitally
important to our Nation's security. Much like our Department of Defense
protects American's from military threats; CDC is committed to its job
of protecting Americans from health, safety and security threats both
foreign and domestic. Whether diseases start at home or abroad, are
chronic or acute, curable or preventable, human error or deliberate
attack, CDC and its collaboration with State and local health
departments are our first line of defense. CDC applies groundbreaking
health and medical research and real-time emergency response to keep
America healthy, safe, and secure.
Since 2011, I have had the privilege of working closely with one of
Atlanta's most treasured resources, the CDC. The CDC is unique in that
it is one of the only Federal agencies headquartered outside of the
Washington, D.C. beltway. This makes the connection to corporations and
what CDC does even more evident. Atlanta is my hometown, along with 5
million other people, and CDC is a substantial contributor to
employment, investment and tax base in Georgia, with almost $940
million in payroll annually to Georgia, and over 8,000 employees,
making it one of the State's top 15 employers.
I see firsthand that CDC's research science and outreach keeps
employees and their families safe and healthy, while ensuring that our
businesses can compete around the world in a safe, healthy environment.
CDC is vital to a healthy national workforce and economy. CDC
contributions expand well beyond Georgia, as more than 70 percent of
CDC's funding goes to State and local agencies across the U.S. By doing
so, CDC further sets the standard for action-oriented public health
initiatives and research. CDC provides emergency preparedness and
response 24/7 to any health threat. Through its efforts CDC has
prevented 5-10 million cases of influenza, 30,000 hospitalizations, and
about 1,500 deaths in the U.S. In the past few years, CDC has conducted
more than 750 field investigations on health threats in the U.S. and in
more than 35 countries. Whether through its global health initiatives
or local foodborne illness investigations, the work of the CDC could
not be more important. CDC's world-class work and importance to our
Nation's economic health and security is not lost on the voting public
who national polls, now, for many years have voted CDC as the most
trusted agency of the Federal Government.
Therefore, I must express my concern for CDC's budget outlook for
fiscal years 2013 and 2014. For Fiscal 2013, as a result of the
sequestration and the President's recently announced plan to allocate
funding within the Prevention and Public Health Fund, CDC's program
authority will total $6.291 billion, which represents a $575 million or
8.4 percent reduction from Fiscal 2012 levels. For Fiscal 2014, the
President's budget would reduce CDC's Budget Authority $432 million
below its fiscal year 2012 levels and $228 million less than the Fiscal
2013 post-sequestration level. By comparison, the President's Fiscal
2014 Budget Authority level for CDC is more than $1 billion less than
CDC's Fiscal 2010 Budget Authority level.
Mr. Chairman, I respectfully request that you restore CDC's Budget
Authority in your Fiscal 2014 Labor, Health and Human Services
Appropriations bill to CDC's Fiscal 2010 level, as a commitment to our
Nation's safety against current and unknown health threats. It is
important for the Members of the Committee to understand that CDC's
budget has been cut almost five percent, yet our Nation's health
threats continue to grow.
The current and future budgetary challenges and economic landscape
make the need for a strong CDC greater than ever. Recession-driven cuts
in Federal, State, and local spending have reduced public health
workers by about a fifth. The latest round of budget cuts and the fact
that CDC's 2013 budget is locked into Fiscal 2012 budgetary priorities,
as a result of Congress' inability to pass a Fiscal 2013 Labor, Health
and Human Services Appropriations bill, provide even less flexibility
for the CDC Director to improve the effectiveness of his budget and to
respond to unanticipated and emerging public health threats. Americans
and the American corporations, for whom I speak, want to know that they
will be protected from a possible meningitis outbreak, E. coli threat,
a whooping cough outbreak, chemical and biological terrorist threats, a
new virus or other unknown epidemic. The snowballing impact of proposed
cuts, from annual budgeting or sequestration, reduces the ability of
the CDC to swiftly respond to problems.
Unless we can change proposed allocations and give the CDC director
more flexibility to better use more limited resources, long standing
core programs like Immunization Services across the country and
Infectious Disease detection and response at CDC will be compromised.
Prevention and public health are best buys, and in many cases can help
reduce long-term health costs and save taxpayer dollars. The world, our
country and our national and global workforces are facing more drug
resistance and emerging diseases, and protection against this is being
compromised. Disease knows no borders and affects people anywhere and
everywhere. We need CDC to protect the health of the world, and also
the health of the economy. The CDC is the Nation's defense department
for health, working 24/7 to protect Americans from health safety and
security threats that could negatively impact our bottom lines.
On behalf of the Corporate Friends of CDC, I am happy to be a
resource to you all as you anticipate the 2014 budgeting process, so
please do not hesitate to contact me.
______
Prepared Statement of the Council on Social Work Education
On behalf of the Council on Social Work Education (CSWE), I am
pleased to offer this written testimony to the Senate Appropriations
Subcommittee on Labor, Health and Human Services, Education, and
Related Agencies for inclusion in the official Committee record. I will
focus my testimony on the importance of fostering a skilled,
sustainable, and diverse social work workforce to meet the health care
needs of the Nation through professional education, training, and
financial support programs for social workers at the Department of
Health and Human Services (HHS).
CSWE is a nonprofit national association representing more than
2,500 individual members and more than 700 master's and baccalaureate
programs of professional social work education. Founded in 1952, this
partnership of educational and professional institutions, social
welfare agencies, and private citizens is the sole accrediting body for
social work education in the United States. Social work education
prepares students for leadership and professional interdisciplinary
practice with individuals, families, groups, and communities in a wide
array of service sectors, including health, mental health, adult and
juvenile justice, PK-12 education, child welfare, aging, and others.
Social work practice is facilitated by a collaborative relationship
that empowers people to be healthy, productive, contributing members of
their communities.
Recruitment and retention in social work continues to be a serious
challenge that threatens the workforce's ability to meet societal
needs. The U.S. Bureau of Labor Statistics estimates that employment
for social workers is expected to grow faster than the average for all
occupations through 2018, particularly for social workers specializing
in the aging population and working in rural areas. In addition, the
need for social workers specializing in mental health and substance use
is expected to grow by almost 20 percent over the 2008-2018 decade.\1\
CSWE understands the difficult funding decisions Congress is faced
with this year given the challenging budget climate. In these
challenging times, it is my hope that the Committee will prioritize
funding for health professions training in fiscal year 2014 to help to
ensure that the Nation continues to foster a sustainable, skilled, and
culturally competent workforce that will be able to keep up with the
increasing demand for social work services and meet the unique health
care needs of diverse communities.
HEALTH RESOURCES AND SERVICES ADMINISTRATION (HRSA)
TITLE VII AND TITLE VIII HEALTH PROFESSIONS PROGRAMS
CSWE urges the Committee to provide $520 million in fiscal year
2014 for the health professions education programs authorized under
Titles VII and VIII of the Public Health Service Act and administered
through HRSA, which is equal to the fiscal year 2012 enacted level.
HRSA's Title VII and Title VIII health professions programs represent
the only Federal programs designed to train health care providers in an
interdisciplinary way to meet the health care needs of all Americans,
including the underserved and those with special needs. These programs
also serve to increase minority representation in the health care
workforce through targeted programs that improve the quality,
diversity, and geographic distribution of the health professions
workforce. The Title VII and Title VIII programs provide loans, loan
guarantees and scholarships to students, and grants to institutions of
higher education and non-profit organizations to help build and
maintain a robust health care workforce. Social workers and social work
students are eligible for funding from the suite of Title VII health
professions programs.
The Title VII and Title VIII programs were reauthorized in 2010,
which helped to improve the efficiency of the programs as well as
enhance efforts to recruit and retain health professionals in
underserved communities. Recognizing the severe shortages of mental and
behavioral health providers within the health care workforce, a new
Title VII program was authorized in the Patient Protection and
Affordable Care Act (Public Law 111-148). The Mental and Behavioral
Health Education and Training Grants program provides grants to
institutions of higher education (schools of social work and other
mental health professions) for faculty and student recruitment and
professional education and training. The program received first-time
funding of $10 million in the final fiscal year 2012 appropriations
bill. The President's fiscal year 2014 budget request would expand the
program through a partnership with the Substance Abuse and Mental
Health Services Administration (SAMHSA) to expand the mental health
workforce by almost 3,500 professionals focused on transition-age youth
(16-25). CSWE urges the Committee to maintain funding for this
critically important program at the highest level possible in fiscal
year 2014. CSWE supports the proposed expansion of the program but
encourages the committee to be inclusive of non-youth populations
needing mental and behavioral health services and not to reduce the
scope of the original intent of the program through the expansion. This
is the only program in the Federal Government that is explicitly
focused on recruitment and retention of social workers and other mental
and behavioral health professionals.
SUBSTANCE ABUSE AND MENTAL HEALTH SERVICES ADMINISTRATION (SAMHSA)
MINORITY FELLOWSHIP PROGRAM
CSWE urges the Committee to appropriate the highest level possible
for the Minority Fellowship Program (MFP) in fiscal year 2014. The goal
of the SAMHSA Minority Fellowship Program (MFP) is to achieve greater
numbers of minority doctoral students preparing for leadership roles in
the mental health and substance use fields. According to SAMHSA,
minorities make up approximately one-fourth of the population, but only
10 percent of mental health providers come from ethnic minority
communities. CSWE is one of six grantees of this critical program and
administers funds to exceptional minority doctoral social work
students. Other grantees include national organizations representing
nursing, psychology, psychiatry, marriage and family therapy, and
professional counselors. SAMHSA makes grants to these six
organizations, who in turn recruit minority doctoral students into the
program from the six distinct professions. CSWE administers the funds
to qualified doctoral students and helps facilitate mentoring and
networking throughout the duration of the fellowship as well as
facilitates an alumni group to help continue to engage former fellows
long after their formal fellowship has ended.
Since its inception in 1974, the MFP has helped support doctoral-
level professional education for over 1,000 ethnic minority social
workers, psychiatrists, psychologists, psychiatric nurses, and family
and marriage therapists. Still, the program continues to struggle to
keep up with the demands that are plaguing these health professions.
Severe shortages of mental health professionals often arise in
underserved areas due to the difficulty of recruitment and retention in
the public sector. Nowhere are these shortages more prevalent than
within Tribal communities, where mental illness and substance use go
largely untreated and incidences of suicide continue to increase.
Studies have shown that ethnic minority mental health professionals
practice in underserved areas at a higher rate than non-minorities.
Furthermore, a direct positive relationship exists between the numbers
of ethnic minority mental health professionals and the utilization of
needed services by ethnic minorities.\2\ The President's fiscal year
2014 budget request includes $9.4 million for MFP core activities; CSWE
urges the committee to support this request.
Thank you for the opportunity to express these views. Please do not
hesitate to call on the Council on Social Work Education should you
have any questions or require additional information.
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\1\ U.S. Bureau of Labor Statistics. 2009. Occupational Outlook
Handbook, 2010-11 Edition: Social Workers, http://data.bls.gov/cgi-bin/
print.pl/oco/ocos060.htm. Retrieved March 28, 2012.
\2\ U.S. Department of Health and Human Services, Substance Abuse
and Mental Health Services Administration, Center for Mental Health
Services. (2001). Mental Health: Culture, Race, and Ethnicity--A
Supplement to Mental Health: A Report of the Surgeon General. Retrieved
from http://www.surgeongeneral.gov/library/mentalhealth/cre/sma-01-
3613.pdf.
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______
Prepared Statement of the Crohn's and Colitis Foundation of America
SUMMARY OF FISCAL YEAR 2014 RECOMMENDATIONS
_______________________________________________________________________
1) $32 billion for the National Institutes of Health (NIH) at an
increase of $1 billion over fiscal year 2013. Increase funding for the
National Cancer Institute (NCI), The National Institute of Diabetes and
Digestive and Kidney Diseases (NIDDK) and the National Institute of
Allergy and Infectious Diseases (NIAID) by 12 percent.
2) Continued focus on Digestive Disease Research and Education at
NIH, including Inflammatory Bowel Disease (IBD) and Colorectal Cancer.
3) $6,860,000 for the Centers for Disease Control and Prevention's
(CD C) IBD Epidemiology Activities.
4) $50 million for the Center for Disease Control and Prevention's
(CDC) Colorectal Cancerscreening and Prevention Program.
_______________________________________________________________________
Thank you for the opportunity to again submit testimony to the
subcommittee. CCFA has remained committed to its mission of finding a
cure for Crohn's disease and ulcerative colitis and improving the
quality of life of children and adults affected by these diseases for
over 46 years. Impacting an estimated 1.4 million Americans, 30 percent
of whom are diagnosed in their childhood years, Inflammatory Bowel
Diseases (IBD) are chronic disorders of the gastrointestinal tract
which cause abdominal pain, fever, and intestinal bleeding. IBD
represents a major cause of morbidity from digestive illness and has a
devastating impact on both patients and their families.
The social and economic impact of digestive disease is enormous and
difficult to grasp. Digestive disorders afflict approximately 65
million Americans. This results in 50 million visits to physicians,
over 10 million hospitalizations, collectively 230 million days of
restricted activity. The total cost associated with digestive diseases
has been conservatively estimated at $60 billion a year.
The CCFA would like to thank the subcommittee for its past support
of digestive disease research and prevention programs at the National
Institutes of Health (NIH) and the Centers for Disease Control and
Prevention (CDC).
Specifically the CCFA recommends:
--$32 billion for the NIH.
--$2.16 billion for the National Institute of Diabetes and Digestive
and Kidney Disease (NIDDK).
We at the CCFA respectfully request that any increase for NIH does
not come at the expense of
other Public Health Service agencies. With the competing and the
challenging budgetary constraints the subcommittee currently operates
under, the CCFA would like to highlight the research being accomplished
by NIDDK which warrants the increase for NIH.
INFLAMMATORY BOWEL DISEASE
In the United States today about one million people suffer from
Crohn's disease and ulcerative colitis, collectively known as IBD.
These are serious diseases that affect the gastrointestinal tract
causing bleeding, diarrhea, abdominal pain, and fever. Complications
arising from IBD can include anemia, ulcers of the skin, eye disease,
colon cancer, liver disease, arthritis, and osteoporosis. The cause of
IBD is still unknown, but research has led to great breakthroughs in
therapy.
In recent years researchers have made significant progress in the
fight against IBD. The CCFA encourages the subcommittee to continue its
support of IBD research at NIDDK and NIAID at a level commensurate with
the overall increase for each institute. The DDNC would like to applaud
the NIDDK for its strong commitment to IBD research through the
Inflammatory Bowel Disease Genetics Research Consortium. The CCFA urges
the Consortium to continue its work in IBD research.
CENTERS FOR DISEASE CONTROL AND PREVENTION IBD EPIDEMIOLOGY
CDC, in collaboration with a nationwide, geographically diverse
network of large managed health care delivery systems, has led an
epidemiological study of IBD to understand IBD incidence, prevalence,
demographics, and healthcare utilization. The group, comprised of
investigators at the Massachusetts General Hospital in Boston, Rhode
Island Hospital, the Crohn's and Colitis Foundation of America, and
CDC, has piloted the Ocean State Crohn's and Colitis Registry (OSCAR),
which includes both pediatric and adult patients. Since 2008, the OSCAR
investigators have recruited 22 private-practice groups and hospital
based physicians in Rhode Island and are that enrolling newly diagnosed
patients into the registry. This study found an average annual
incidence rate of 8.4 per 100,000 people for Crohn's disease and 12.4
per 100,000 for Ulcerative Colitis; published in Inflammatory Bowel
Disease Journal, April 2007.
--Over the course of the initial 3-year epidemiologic collaboration,
CDC laboratory scientists and epidemiologists worked to improve
detection tools and epidemiologic methods to study the role of
infections (infectious disease epidemiology) in pediatric IBD,
collaborating with extramural researchers who were funded by a
National Institutes of Health (NIH) research award.
--Since 2006, CDC epidemiologists have been working in conjunction
with the Crohn's and Colitis Foundation of American and a large
health maintenance organization to better understand the
natural history of IBD and factors that predict the course of
disease.
The Crohn's and Colitis Foundation of America encourages the CDC to
continue to support a nationwide IBD surveillance and epidemiological
program in fiscal year 2014.
COLORECTAL CANCER PREVENTION
Colorectal cancer is the third most commonly diagnosed cancer for
both men and woman in the United States and the second leading cause of
cancer-related deaths. Colorectal cancer affects men and women equally.
The CCFA recommends a funding level of $50 million for the CDC's
Colorectal Cancer Screening and Prevention Program. This important
program supports enhanced colorectal screening and public awareness
activities throughout the United States. The DDNC also supports the
continued development of the CDC-supported National Colorectal Cancer
Roundtable, which provides a forum among organizations concerned with
colorectal cancer to develop and implement consistent prevention,
screening, and awareness strategies.
CONCLUSION
The CCFA understands the challenging budgetary constraints and
times we live in that this subcommittee is operating under, yet we hope
you will carefully consider the tremendous benefits to be gained by
supporting a strong research and education program at NIH and CDC.
Millions of Americans are pinning their hopes for a better life, or
even life itself, on digestive disease research conducted through the
National Institutes of Health. Mr. Chairman, on behalf of our patients,
we appreciate your consideration of our view. We look forward to
working with you and your staff.
______
Prepared Statement of the CURE CMD
On behalf of the thousands of Americans with Congenital Muscular
Dystrophy (CMD), we urge the subcommittee to support the National
Institutes of Health (NIH) at $32 billion in fiscal year 2014.
Cure CMD is a nonprofit organization dedicated to finding
treatments and, eventually, a cure for the devastating ravages of the
congenital muscular diseases. CMD is a group of diseases causing muscle
weakness at birth or within the first 2 years of childhood. Several
defined genetic mutations cause muscles to break down faster than they
can repair or grow. A child with CMD may have various neurological or
physical impairments and may never gain the ability to walk. Cure CMD
represents the network of family, friends, caretakers and affected
individuals tirelessly battling this devastating disease every day.
Aubrey, Katie, and Maia are just a few of the affected population, but
their stories are common among the CMD community. An introduction to
their stories is below:
Aubrey has never been able to stand, sit up unaided, or even roll
over. Despite her challenges, she remains an energetic, intelligent and
enthusiastic 6\1/2\-year-old. The most challenging part of her overall
weakness is her inability to cough--leaving her susceptible to frequent
respiratory illness. A simple runny nose can very quickly turn into
pneumonia. In her short life, she, like many children with CMD, has
been hospitalized with pneumonia multiple times. With each admission,
parents often wonder whether their child will be strong enough to fight
through it again. It is a long and difficult battle.
Katie, an honors student in college, lost her ability to walk in
sixth grade. Weighing just 55 pounds, Katie needs help showering,
getting dressed, brushing her hair, preparing a meal, getting books
from her backpack and breathing with a machine at night. On a college
study abroad trip to France earlier this year, Katie suffered acute
respiratory failure. She required specialized care and fully recovered
because Cure CMD guided the entire care process from the U.S. with
physicians in France.
Maia, 15-year-old with CMD, is a profoundly disabled teen who
overcame tremendous odds through her sheer determination and resolve of
her family, therapists and school aides. She has the great misfortune
of receiving multiple disadvantages: static cognitive impairment and
progressive muscle weakness. Her speech is limited to 5 words.
CMD is a progressive disease without treatment. The future is
bleak. It is a life that ends after years of non-stop caregiving,
dependency, hospitalizations and loss . . . loss of ambulation, loss of
integration within society, loss of ability to sign and communicate,
loss of an ability to breathe on one's own and loss of life.
Cure CMD is deeply appreciative of the critical support NIH has
provided to congenital muscular dystrophy research and the
organization's steadfast pathway toward clinical trials. With help from
the NIH, in just 5 years Cure CMD has brought scientists together from
around the world to work toward common therapeutic targets, launched an
International Patient Registry, created a CMD family conference to
share learnings, developed a bio bank for investigators and created new
care guidelines for families and physicians--the first step in
``treatment'' to improve and save the lives of people with CMD.
The research NIH supports is making significant advances in better
understanding and treating CMD. Without this vital research, the CMD
community will be setback years in making progress and improving the
quality of life of those suffering with this devastating disorder.
We respectfully ask the subcommittee to encourage NIH to continue
to support grants and other funding mechanisms to advance key
congenital muscle disease initiatives for clinical trial readiness.
Furthermore, we would like the subcommittee to request an update from
NIH in future fiscal year congressional budget justifications on total
dollars spent on congenital muscular dystrophy and congenital myopathy
research.
We applaud the subcommittee's past support of NIH and urge you to
fund NIH at $32 billion in fiscal year 2014. We understand the need for
fiscal responsibility, but this cannot come at the expense of research
that could significantly impact the daily lives of those living with
CMD.
______
Prepared Statement of the Cystic Fibrosis Foundation
On behalf of the Cystic Fibrosis Foundation and the 30,000 people
with cystic fibrosis (CF) in the United States, we submit the following
testimony to the Senate Appropriations Committee's Subcommittee on
Labor, Health and Human Services, Education, and Related Agencies on
our funding requests for fiscal year 2014.
The Cystic Fibrosis Foundation remains significantly concerned
about the impact of the recently-enacted sequester and other funding
reductions on biomedical research and the health of the CF population.
The Foundation requests the highest possible funding level for the
National Institutes of Health, its National Center for Advancing
Translational Sciences, and programs that provide access to health care
in fiscal year 2014, in order to support continued scientific
discoveries and promote the well-being of those living with this
serious illness.
Developing Cystic Fibrosis Treatments and a Cure through NIH Funding
As the Committee considers its funding priorities for the coming
fiscal year, we urge consideration of the critical role that NIH plays
in the development of treatments for cystic fibrosis and other diseases
and respectfully request increased funding for this vital agency.
NIH-funded advances like the mapping of the human genome and the
development of high throughput screening were essential to the creation
of KalydecoTM, a cystic fibrosis treatment approved in
January 2012 and called ``the most important drug of 2012'' by Forbes
Magazine. This breakthrough drug, developed by Vertex Pharmaceuticals
in cooperation with the Cystic Fibrosis Foundation, is the first to
treat the underlying cause of cystic fibrosis in those with a
particular genetic mutation of CF that impacts about 4 percent of the
CF population. More exciting advancements are in the pipeline, as phase
3 clinical trials are underway to study a combination of Kalydeco and a
new compound, VX-809. This combination would treat those with the most
common CF mutation, comprising about 50 percent of those with CF in the
United States.
Other NIH-funded research could be the key to future cystic
fibrosis treatments, such as research conducted through NIH's pediatric
liver disease consortium at the National Institute of Diabetes,
Digestive, and Kidney Diseases (NIDDK), which helps researchers
discover treatments for CF-related liver disease and other diseases
that affect thousands of children each year.
NIH also issued two Requests for Applications (RFAs) last year that
specifically target cystic fibrosis, one to study early lung disease
and the other to study cystic fibrosis-related diabetes, both of which
could lead to new scientific discoveries. The agency also invests in
research at the University of Iowa that studies the effects of CF in
both pig and ferret models. The ferret model in particular is expected
to be uniquely informative of early events in CF-related diabetes and
will compliment the ongoing work done through the NIDDK's RFA efforts.
CF-related genetic research also benefits from Federal funding.
Research into cystic fibrosis transmembrane conductance regulator
(CFTR) folding and trafficking and CFTR protein structure is critical
to the creation of new drugs that treat the underlying cause of the
disease. The data that emerged from Kalydeco Phase 2 and 3 clinical
trials provided proof that CFTR protein function modulation, the
mechanism by which this drug targets the physiological defect in those
with a particular CF mutation, is a viable therapeutic approach. More
NIH-funded research is needed to understand the more than 1,000 other
genetic mutations of CF.
Lastly, it is important to note that NIH funding benefits the
economy, supporting more than 402,000 jobs and $57 billion in economic
output in 2012 according to a report by United for Medical Research.
Funding for NIH also attracts the next generation of promising
researchers through programs like the National Research Service Awards
(NRSAs). Robust funding for NIH promotes much-needed economic growth
and supports the scientific progress that makes the United States the
worldwide leader in biomedical research.
Advancing Innovation Through Translational Science
The Cystic Fibrosis Foundation strongly supports efforts to
strengthen the field of translational science and urges the Committee
to increase funding for the NIH's National Center for Advancing
Translational Sciences (NCATS). NCATS' use of innovative methods and
technologies to improve the development, testing and implementation of
diagnostics and therapeutics improves the efficiency of the translation
of basic scientific discoveries into new therapies and advances the
search for cures.
Certain NCATS programs are integral to the center's success and
merit special consideration. These include the Clinical and
Translational Science Awards (CTSA), the Cures Acceleration Network
(CAN) and the Therapeutics for Rare and Neglected Diseases (TRND)
program, all designed to support clinical and translational research
and transform the way in which it is conducted and funded. TRND in
particular, inspired by the Cystic Fibrosis Foundation's Therapeutics
Development Network of clinical research centers, is essential to the
advancement of treatments for rare illnesses.
NCATS also emphasizes collaboration across sectors, promoting more
efficient and innovative drug discovery and development. For example,
the center is working with the Defense Advanced Research Projects
Agency (DARPA) and the Food and Drug Administration (FDA) to design a
tissue chip for drug screening. This chip, composed of diverse human
cells and tissues, mimics how drugs interact with the human body. If
successful, this chip could make drug safety and efficacy assessments
possible at an earlier stage in drug development, enabling
investigators to concentrate on the most promising new drugs.
Other significant collaborative projects include the Regulatory
Science Initiative and the FDA-NIH Joint Leadership Council. As
treatments like Kalydeco are developed to target specific genetic
mutations and smaller populations, collaborative efforts between NIH,
FDA and others in Government, industry and academia will promote the
swift advancement of therapies from the laboratory to the patients who
need them most.
Promoting Access to Quality, Specialized Health Care
The Cystic Fibrosis Foundation encourages robust funding for
provisions of the Affordable Care Act (ACA) that ensure affordable
access to quality, specialized health care for those with cystic
fibrosis.
In order to receive the highest quality care, people with CF
require treatment by a multidisciplinary team of providers who
specialize in CF and practice at an accredited CF care center. Cystic
fibrosis patients also need a variety of drugs and therapies to keep
them healthy, many requiring 2-3 hours of treatment per day.
Cystic fibrosis is also an expensive disease. People with cystic
fibrosis typically have medical costs 15 times greater than an average
person. Unfortunately, the high cost of CF care is increasingly passed
on to patients, placing a financial burden on those already struggling
with a serious, chronic illness. Twenty 5 percent of CF patients in a
recent survey reported that they have delayed or skipped medical care
due to cost, and 31 percent said they skipped doses of medication or
took less than prescribed due to cost concerns.
Affordable insurance that provides coverage for comprehensive,
specialized care and medications allows those with CF to access the
best treatment available for this difficult disease. High co-payments,
excessive co-insurance rates and unnecessary prior authorization
requirements are burdensome barriers for those who need treatment to
stay healthy.
We urge the Committee to provide sufficient funding for the ACA
provisions that will help those with cystic fibrosis afford the care
they need, including the expansion of the Medicaid program, the
development of Health Insurance Marketplaces to ensure adequate and
affordable coverage for high-quality, specialized cystic fibrosis care
and the creation of Essential Health Benefits that include access to
specialized CF care centers and medications and prevent overly
burdensome barriers to needed treatments.
About Cystic Fibrosis and the Cystic Fibrosis Foundation
Cystic fibrosis is a rare genetic disease that causes the body to
produce abnormally thick mucus that clogs the lungs and results in
life-threatening infections. This mucus also obstructs the pancreas and
stops natural enzymes from helping the body break down and absorb food.
The Cystic Fibrosis Foundation's mission is to find a cure for CF
and improve the quality of life for those living with the disease.
Through the Foundation's efforts, the life expectancy of a child with
CF has doubled in the last 30 years and research to find a cure is more
promising than ever. The Foundation's research efforts have helped
create a robust pipeline of potential therapies that target the disease
from every angle. Nearly every CF drug available today was made
possible because of the Foundation's support and our ongoing work to
find a cure.
Once again, we urge the Committee to increase funding for
biomedical research at the National Institutes of Health and for
programs that provide access to specialized health care in fiscal year
2014. We stand ready to work with the Committee and Congressional
leaders on the challenges ahead. Thank you for your consideration.
______
Prepared Statement of the Deans' Nursing Policy Coalition
Dear Chairman Harkin and Ranking Member Moran: As the subcommittee
begins its deliberations on the fiscal year 2014 Labor, HHS, and
Education appropriations bill, we write as members of the Deans'
Nursing Policy Coalition (the Coalition) to urge you to protect and
sustain funding for nursing science, research, practice, and education
programs, which are critical to our efforts to provide high-quality,
affordable care for a growing and increasingly diverse patient
population.
The Coalition comprises seven top research-based schools of nursing
that generate evidence for effective health care practice and translate
that knowledge to the education and policy environments. As leaders in
graduate-level nursing, our schools also focus on educating advanced
practice nurses to direct patient care in clinical settings, expert
faculty practitioners to train the next generation of nurses, and
Ph.D.-level nurse researchers to conduct cutting-edge research that
promotes health and helps manage chronic conditions such as diabetes,
obesity and cardiovascular disease.
The Coalition's funding priorities play a foundational role in
supporting the nursing profession. We urge you to support the following
agencies and programs:
--National Institutes of Health (NIH), including $150 million for the
National Institute for Nursing Research (NINR), which funds
research that establishes the scientific basis for disease
prevention, cancer care, health promotion, and high quality
nursing care;
--At least $231 million for the Nursing Workforce Development
Programs at the Health Resources and Services Administration
(HRSA) to build a more highly educated nursing workforce, as
recommended by the Institute of Medicine's report, The Future
of Nursing: Leading Change, Advancing Health; and
--As much funding as possible for Nurse-Managed Health Clinics
(NMHCs), funded through Title III of the Public Health Services
Act, which will enable nurses to help expand and improve
delivery of care.
National Institutes of Health; National Institute of Nursing Research
As our top priority, we urge you to support a funding request of at
least $32 billion for NIH in fiscal year 2014. Of particular importance
to the Coalition is NINR, the smallest institute at NIH and an
important source of Federal funding for nursing science and research.
We respectfully request $150 million for NINR in fiscal year 2014.
Nursing science is the care of people. Through NINR awards, nurse
researchers investigate strategies to prevent chronic health
conditions, such as diabetes, heart disease and HIV/AIDS; provide
symptom management for cancer patients; promote health and healthier
treatment outcomes; eliminate health disparities by identifying
culturally appropriate interventions and care strategies; and improve
processes and strategies for palliative care, easing suffering at the
end of life. NINR supports research that is highly translational,
focused on the effectiveness and cost-effectiveness of health care
interventions.
In fact, much of the care patients receive in hospital settings
today is based on NINR research and is widely adopted as best practices
by physicians, hospitals and insurers. For example, chronic diseases
cause seven out of every 10 deaths in the United States and are among
the most costly and preventable health problems. NIH support to Emory
University is helping nurse researchers address this growing epidemic
by launching an inter-professional education and mentoring program to
prepare nurse scientists for the challenges of translating scientific
research for chronically ill patients.
Nursing Workforce Development Programs
We also urge you to provide at least $231 million for HRSA's
Nursing Workforce Development programs (Title VIII of the Public Health
Service Act), the largest source of dedicated funding for nurse
education. Of specific interest to the Coalition, Title VIII programs
support future nurse faculty, such as the Advanced Education Nurse
Program and the Nurse Faculty Loan Program. According to the American
Association of Colleges of Nursing's most recent survey, the nursing
shortage is caused and perpetuated by insufficient numbers of nurse
faculty and clinical preceptors, not a lack of interested and
academically qualified students.
The Coalition appreciates the budgetary challenges associated with
the current fiscal environment, but we believe that these programs are
critical to promote academic progression, as highlighted in the IOM
report, and to enable nursing schools to open admissions, expand
student capacity, and ensure a supply of qualified nurse professionals.
Nurse-Managed Health Clinics
Finally, we urge you to designate as much as possible for Nurse-
Managed Health Clinics (Title III of the Public Health Service Act,
administered by HRSA) in fiscal year 2014 and to reject the
Administration's actions to merge NHMCs with federally Qualified Health
Clinics (FQHCs).
NMHCs, closely linked to schools of nursing, were created under the
Affordable Care Act as part of a comprehensive primary care workforce
development strategy; the program was authorized at $50 million.
Although a small amount of funding from other sources was made
available for NMHCs in fiscal years 2010 through 2012, this important
and cost-effective program has been hindered by inconsistent funding
and administration. We remain concerned that the President has folded
NMHCs into the Community Health Center program; the Administration's
approach contains an explicit expectation for current and new NMHCs to
become FQHCs, sacrificing the unique qualities of NMHCs in the process.
FQHCs operate under a number of very rigid requirements related to
governance and administration which are not likely to be modified.
Coming into compliance with those requirements will cause NMHCs to lose
many of the attributes that make them excellent sites for nurse
education and for development of improved care models.
Of particular importance to the Coalition, each NMHC is required
under the ACA to be affiliated with a school, college, university or
department of nursing, or independent nonprofit health or social
services agency, and plays an important role in nurse education,
serving as clinical education and practice sites for students and
faculty. FQHCs are not required to partner with schools of nursing and
as the NMHC program is merged with FQHCs and required to meet new
governance requirements, schools of nursing will lose an important
teaching site for their student nurses and for other health
professionals on interdisciplinary teams.
We understand that the subcommittee and the Congress will need to
make difficult decisions regarding fiscal year 2014 and the larger
budget environment, but we urge you to consider the impact of recent
funding reductions--and the threat of additional cuts--to programs
designed to educate and train our health care workforce to meet the
needs of the American public. We greatly appreciate your leadership on
nursing issues and consideration of these requests.
Sincerely,
Bobbie Berkowitz, PhD, RN, FAAN, Dean and
Professor, Columbia School of Nursing,
Senior Vice President, Columbia University
Medical Center; Colleen Conway-Welch, PhD,
CNM, FAAN, FACNM, Nancy & Hilliard Travis
Professor of Nursing, Dean, Vanderbilt
University School of Nursing; Catherine L.
Gilliss, PhD, RN, FAAN, Dean and Helene
Fuld Health Trust Professor of Nursing,
Duke University School of Nursing, Vice
Chancellor for Nursing Affairs, Duke
University; Margaret Grey, DrPH, RN, FAAN,
Dean and Annie Goodrich Professor, Yale
University School of Nursing; Linda A.
McCauley, RN, PhD, FAAN, Dean and
Professor, Nell Hodgson Woodruff School of
Nursing, Emory University; Afaf I. Meleis,
PhD, DrPS(hon), FAAN, Margaret Bond Simon
Dean of Nursing, University of Pennsylvania
School of Nursing; Kathy Rideout, EdD, PNP-
BC, FNAP, Dean, University of Rochester
School of Nursing.
______
Prepared Statement of the Diabetes Advocacy AllianceTM (DAA)
Dear Chairman Harkin and members of the subcommittee: The Diabetes
Advocacy AllianceTM (DAA), a coalition of 19 members
representing patient advocacy organizations, professional societies,
trade associations, other nonprofit organizations, and corporations
committed to changing the way diabetes is viewed and treated in
America, is pleased to provide this written testimony in support of
funding for the National Diabetes Prevention Program (National DPP). As
you craft the fiscal year 2014 Labor, Health & Human Services,
Education and Related Agencies (LHHS) appropriations bill, the DAA
urges you to include $20 million in funding for the National DPP.
Since the National DPP was first established in the Affordable Care
Act (ACA) with the goal to ``eliminate the preventable burden of
diabetes,'' the DAA has advocated strongly for Federal funding to bring
the program to scale nationally. A unique public-private partnership
that seeks to roll out across the country clinically-proven, community-
based diabetes prevention programs targeted to people with prediabetes,
the National DPP received $10 million in Federal funding in 2012 and
the Senate appropriated $20 million in fiscal year 2013 that was never
enacted. The National DPP has received no Congressional funding since
2012--despite the continuing growth in diabetes prevalence across the
Nation.
The Diabetes Epidemic and its Toll Continues Unabated
Currently 26 million Americans have diabetes, and another 79
million have prediabetes and are at high risk for developing type 2
diabetes within seven to 10 years.\1\ In fact, 70 percent of those with
prediabetes could progress to type 2 diabetes without intervention.\2\
Over the past 30 years, the percentage of Americans diagnosed with
diabetes has more than doubled.\3\ According to the Centers for Disease
Control and Prevention (CDC), as many as 1 in 3 adults could have
diabetes by the year 2050.\4\ Even among the youth of our nation--who
historically have not developed type 2 diabetes--rates of the disease
are on the rise. In fact, a CDC study projects that the number of
children with type 2 diabetes will increase by nearly 50 percent by
2050 if current trends continue. If type 2 diabetes incidence increases
even slightly, mirroring other countries, the rate of type 2 diabetes
among children in the U.S. could grow fourfold by 2050.\5\
Diabetes is a gateway disease, often leading to life-altering
complications. The longer people live with diabetes, the more likely it
is that they will develop complications that include heart attack,
stroke, blindness, kidney failure and limb amputations.\6\ Each day,
because of diabetes, 230 people have limbs amputated, 120 people
develop kidney failure, and 55 people go blind.\7\ Diabetes and its
complications shorten the life expectancy of those living with the
disease by seven to 8 years.\8\
Diabetes affects our Nation's fiscal health as well. In 2012, the
Nation spent $245 billion on diagnosed diabetes, an increase of 41
percent from 2007.\9\
Type 2 Diabetes: A Chronic Disease we Know How to Prevent
Despite these grim statistics, there is hope for bending the impact
curve of diabetes and altering both the human and economic toll of the
disease--and that hope is the National DPP. The National DPP is based
on a clinically-proven program, the National Institutes of Health-
funded Diabetes Prevention Program, which showed that adults with
prediabetes could reduce their risk for developing type 2 diabetes by
up to 58 percent through moderate weight loss and regular physical
activity. Older adults, those age 60 and over, who made these same
lifestyle changes reduced their risk of developing type 2 diabetes by
71 percent.\10\ Follow-up research confirmed that these positive
outcomes persist for at least a decade after participating in the
lifestyle intervention and that the program can be offered effectively
and cost-effectively within group settings at YMCAs and other
community-based locations.\11\
More recent research, published just this month, examined the 10-
year effectiveness of the DPP among participants who were adherent to
the lifestyle intervention--those who lost at least 5 percent of their
body weight--and showed that the lifestyle intervention, which is
essentially the National DPP, ``represents a good value for money.''
And it improved the quality of life for participants.\12\
The Promise of the National DPP: A Public-Private Partnership that is
Getting Results
The National DPP, administered through the CDC, can help improve
our Nation's health by halting or stopping the progression to type 2
diabetes; and improve our fiscal health as well by decreasing what we
spend on treating diabetes and its life-altering complications. If
fully scaled, the NDPP holds the promise of delivering cost-effective
diabetes prevention programs in communities across the Nation to the 79
million Americans at high risk for diabetes.
The National DPP authorized in the Affordable Care Act, got its
start as a public-private partnership in 2010 when the YMCA of the USA
(Y-USA) partnered with the CDC's National Diabetes Prevention Program
and the Diabetes Prevention and Control Alliance to offer diabetes
prevention programs cost effectively at local Ys. About 80 percent of
U.S. households live within five miles of a Y. Through the partnership,
four UnitedHealthcare plans were the first private plans to offer the
program as a covered benefit and reimburse Ys on a pay-for-performance
basis, including meeting weight loss goals. Since then, 18 additional
plans from UnitedHealthcare, as well as Medica, MVP and Florida Blue
have joined DPCA's network of payers. Today, Y-USA, the Diabetes
Prevention and Control Alliance and many others are working with CDC in
this successful public-private partnership to continue to roll out this
program nationwide.
In fact, through the National DPP, the YMCA's Diabetes Prevention
Program is now available at about 500 sites across 32 States.
Approximately 9,000 individuals have enrolled and attended classes
since 2010, and more than half of the participants have completed the
full year-long program.
The Center for Medicare & Medicaid Innovation (CMMI) awarded a $12
million Health Care Innovation Award to Y-USA, recognizing the YMCA'S
Diabetes Prevention Program's success and cost-effectiveness. Under the
grant, Y-USA will deliver its Diabetes Prevention Program to 10,000
adults age 65+ with prediabetes in 17 communities across the Nation,
with an estimated cost savings to Medicare of $4.2 million over 3 years
and $53 million over 6 years.
What $20 Million in Federal Funding Will Provide
Providing $20 million in Federal funding for the National DPP in
fiscal year 2014 is a good investment for the Nation. It will:
--Put the program on track to reach 250,000 people with prediabetes;
--Establish five business outreach coalitions to engage and educate
employers and insurers on the return on investment for offering
proven lifestyle interventions for type 2 diabetes to high risk
individuals.
--Support the provision of training nationally for individuals who
will deliver the lifestyle intervention in community and
clinical settings and worksites, and to develop a web-based
learning center.
--Maintain the CDC's Recognition Program for the NDPP, which provides
an imprimatur ensuring the quality, consistency, and integrity
of the lifestyle intervention.
--Support a national awareness campaign to expand the adoption and
impact of the National DPP.
According to the Urban Institute, rolling out evidence-based
diabetes prevention programs nationally through the National DPP could
save the Nation $191 billion over the next decade--with 75 percent of
savings going to Medicare and Medicaid.\13\
The National DPP is without question a good investment for the 79
million Americans with prediabetes and for our country. In closing, the
DAA urges you to include $20 million in funding for the National DPP in
the fiscal year 2014 Labor, Health & Human Services, Education and
Related Agencies (LHHS) appropriations bill to bring this program to
scale nationally for the 79 million Americans with prediabetes in the
U.S. who are on a relentless march toward diabetes without
intervention.
---------------------------------------------------------------------------
\1\ CDC National Diabetes Factsheet 2011. Available at CDC website:
http://www.cdc.gov/
diabetes/pubs/factsheet11.htm. Accessed April 15, 2013.
\2\ Geiss LS, James C, Gregg EW et al. Diabetes Risk Reduction
Behaviors among US Adults with Prediabetes. American Journal of
Preventive Medicine. 2010. 38(4):403-409.
\3\ CDC National Diabetes Factsheet 2011. Available at CDC website:
http://www.cdc.gov/
diabetes/pubs/factsheet11.htm. Accessed April 15, 2013.
\4\ Boyle JP, Thompson TJ, Gregg EW, Barker LE, Williamson DF.
Projection of the Year 2050 Burden of Diabetes in the US Adult
Population: Dynamic Modeling of Incidence, Mortality and Prediabetes
Prevalence. Population Health Metrics. 8(29), October 2010.
\5\ Imperatore G et al. Projections of Type 1 and Type 2 Diabetes
in the US Population Aged < 20 Years Through 2050. Diabetes Care.
35(12), December 2012.
\6\ CDC National Diabetes Factsheet 2011. Available at CDC website:
http://www.cdc.gov/
diabetes/pubs/factsheet11.htm. Accessed April 15, 2013.
\7\ American Diabetes Association. Diabetes: A National Epidemic,
January 2008. Available at: http://house.gov/degette/diabetes/docs/
Diabetes%20A%20National%20Epidemic.fs.08.pdf. Accessed April 15, 2013.
\8\ Franco OH, Steyerberg EW, Hu FB et al. Associations of Diabetes
Mellitus with Total Life Expectancy and Life Expectancy with and
without Cardiovascular Disease. Archives of Internal Medicine.
2007;167:1145-51.
\9\ American Diabetes Association. Economic Costs of Diabetes in
the US in 2012. Published online before print. Diabetes Care. March 6,
2013.
\10\ Diabetes Prevention Program Research Group. Reduction in the
Incidence of Type 2 Diabetes with Lifestyle Intervention or Metformin.
New England Journal of Medicine. 346(6): 393-403, 2002.
\11\ Diabetes Prevention Program Research Group. 10-Year Follow Up
of Diabetes Incidence and Weight Loss in the DPPOS. Lancet.
2009;374(9702): 1677-1686 and Ackermann RT, Finch EA, Brizendine e,
Zhou H, Marrero DG. Translating the DPP into the Community: The DEPLOY
Pilot Study. American Journal of Preventive Medicine. 2008;35(4): 357-
63.
\12\ Herman WH et al. Effectiveness and Cost Effectiveness of
Diabetes Prevention among Adherent Participants. American Journal of
Managed Care. 2013;19(3):194-202.
\13\ Berenson RA et al. Urban Institute. How Can We Pay for Health
Care Reform? July 2009.
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______
Prepared Statement of the Digestive Disease National Coalition
SUMMARY OF FISCAL YEAR 2014 RECOMMENDATIONS
_______________________________________________________________________
1) $32 billion for the National Institutes of Health (NIH) at an
increase of $1 billion over fiscal year 2012. Increase funding for the
National Cancer Institute (NCI), the National Institute of Diabetes and
Digestive and Kidney Diseases (NIDDK) and the National Institute of
Allergy and Infectious Diseases (NIAID) by 12 percent.
2) Continue focus on Digestive Disease Research and Education at
NIH, including Inflammatory Bowel Disease (IBD), Hepatitis and Other
Liver Diseases, Irritable Bowel Syndrome (IBS), Colorectal Cancer,
Endoscopic Research, Pancreatic Cancer, and Celiac Disease.
3) $50 million for the Centers for Disease Control and
Prevention's (CDC) Hepatitis Prevention and Control Activities.
4) $50 million for the Center for Disease Control and Prevention's
(CDC) Colorectal Cancerscreening and Prevention Program.
_______________________________________________________________________
Chairman Harkin, thank you for the opportunity to again submit
testimony to the subcommittee. Founded in 1978, the Digestive Disease
National Coalition (DDNC) is a voluntary health organization comprised
of 33 professional societies and patient organizations concerned with
the many diseases of the digestive tract. The DDNC promotes a strong
Federal investment in digestive disease research, patient care, disease
prevention, and public awareness. The DDNC is a broad coalition of
groups representing disorders such as Inflammatory Bowel Disease (IBD),
Hepatitis and other liver diseases, Irritable Bowel Syndrome (IBS),
Pancreatic Cancer, Ulcers, Pediatric and Adult Gastroesophageal Reflux
Disease, Colorectal Cancer, and Celiac Disease.
The social and economic impact of digestive disease is enormous and
difficult to grasp. Digestive disorders afflict approximately 65
million Americans. This results in 50 million visits to physicians,
over 10 million hospitalizations, collectively 230 million days of
restricted activity. The total cost associated with digestive diseases
has been conservatively estimated at $60 billion a year.
The DDNC would like to thank the subcommittee for its past support
of digestive disease research and prevention programs at the National
Institutes of Health (NIH) and the Centers for Disease Control and
Prevention (CDC).
Specifically the DDNC recommends:
--32 billion for the NIH.
--$2.16 billion for the National Institute of Diabetes and Digestive
and Kidney Disease (NIDDK).
We at the DDNC respectfully request that any increase for NIH does
not come at the expense of other Public Health Service agencies. With
the competing and the challenging budgetary constraints the
subcommittee currently operates under, the DDNC would like to highlight
the research being accomplished by NIDDK which warrants the increase
for NIH.
INFLAMMATORY BOWEL DISEASE
In the United States today about one million people suffer from
Crohn's disease and ulcerative colitis, collectively known as
Inflammatory Bowel Disease (IBD). These are serious diseases that
affect the gastrointestinal tract causing bleeding, diarrhea, abdominal
pain, and fever. Complications arising from IBD can include anemia,
ulcers of the skin, eye disease, colon cancer, liver disease,
arthritis, and osteoporosis. The cause of IBD is still unknown, but
research has led to great breakthroughs in therapy.
In recent years researchers have made significant progress in the
fight against IBD. The DDNC encourages the subcommittee to continue its
support of IBD research at NIDDK and NIAID at a level commensurate with
the overall increase for each institute. The DDNC would like to applaud
the NIDDK for its strong commitment to IBD research through the
Inflammatory Bowel Disease Genetics Research Consortium. The DDNC urges
the Consortium to continue its work in IBD research. Therefore the DDNC
and its member organization the Crohn's and Colitis Foundation of
America encourage the CDC to continue to support a nationwide IBD
surveillance and epidemiological program in fiscal year 2014.
VIRAL HEPATITIS: A LOOMING THREAT TO HEALTH
The DDNC applauds all the work NIH and CDC have accomplished over
the past year in the areas of hepatitis and liver disease. The DDNC
urges that funding be focused on expanding the capability of State
health departments, particularly to enhance resources available to the
hepatitis State coordinators. The DDNC also urges that CDC increase the
number of cooperative agreements with coalition partners to develop and
distribute health education, communication, and training materials
about prevention, diagnosis and medical management for viral hepatitis.
The DDNC supports $50 million for the CDC's Hepatitis Prevention
and Control activities. The hepatitis division at CDC supports the
hepatitis C prevention strategy and other cooperative nationwide
activities aimed at prevention and awareness of hepatitis A, B, and C.
The DDNC also urges the CDC's leadership and support for the National
Viral Hepatitis Roundtable to establish a comprehensive approach among
all stakeholders for viral hepatitis prevention, education, strategic
coordination, and advocacy.
COLORECTAL CANCER PREVENTION
Colorectal cancer is the third most commonly diagnosed cancer for
both men and woman in the United States and the second leading cause of
cancer-related deaths. Colorectal cancer affects men and women equally.
The DDNC recommends a funding level of $50 million for the CDC's
Colorectal Cancer Screening and Prevention Program. This important
program supports enhanced colorectal screening and public awareness
activities throughout the United States. The DDNC also supports the
continued development of the CDC-supported National Colorectal Cancer
Roundtable, which provides a forum among organizations concerned with
colorectal cancer to develop and implement consistent prevention,
screening, and awareness strategies.
PANCREATIC CANCER
In 2013, an estimated 33,730 people in the United States will be
found to have pancreatic cancer and approximately 32,300 died from the
disease. Pancreatic cancer is the fifth leading cause of cancer death
in men and women. Only lout of 4 patients will live 1 year after the
cancer is found and only l out of 25 will survive five or more years.
The National Cancer Institute (NCI) has established a Pancreatic
Cancer Progress Review Group charged with developing a detailed
research agenda for the disease. The DDNC encourages the subcommittee
to provide an increase for pancreatic cancer research at a level
commensurate with the overall percentage increase for NCI and NIDDK.
IRRITABLE BOWEL SYNDROME (IBS)
IBS is a disorder that affects an estimated 35 million Americans.
The medical community has been slow in recognizing IBS as a legitimate
disease and the burden of illness associated with it. Patients often
see several doctors before they are given an accurate diagnosis. Once a
diagnosis of IBS is made, medical treatment is limited because the
medical community still does not understand the pathophysiology of the
underlying conditions.
Living with IBS is a challenge, patients face a life of learning to
manage a chronic illness that is accompanied by pain and unrelenting
gastrointestinal symptoms. Trying to learn how to manage the symptoms
is not easy. There is a loss of spontaneity when symptoms may intrude
at any time. IBS is an unpredictable disease. A patient can wake up in
the morning feeling fine and within a short time encounter abdominal
cramping to the point of being doubled over in pain and unable to
function.
Mr. Chairman, much more can still be done to address the needs of
the nearly 35 million Americans suffering from irritable bowel syndrome
and other functional gastrointestinal disorders. The DDNC recommends
that NIDDK increase its research portfolio on Functional
Gastrointestinal Disorders and Motility Disorders.
DIGESTIVE DISEASE COMMISSION
In 1976, Congress enacted Public Law 94-562, which created a
National Commission on Digestive Diseases. The Commission was charged
with assessing the state of digestive diseases in the U.S., identifying
areas in which improvement in the management of digestive diseases can
be accomplished and to create a long-range plan to recommend resources
to effectively deal with such diseases.
The DDNC recognizes the creation of the National Commission on
Digestive Diseases, and looks forward to working with the National
Commission to address the numerous digestive disorders that remain in
today's diverse population.
CONCLUSION
The DDNC understands the challenging budgetary constraints and
times we live in that this subcommittee is operating under, yet we hope
you will carefully consider the tremendous benefits to be gained by
supporting a strong research and education program at NIH and CDC.
Millions of Americans are pinning their hopes for a better life, or
even life itself, on digestive disease research conducted through the
National Institutes of Health. Mr. Chairman, on behalf of the millions
of digestive disease sufferers, we appreciate your consideration of the
views of the Digestive Disease National Coalition. We look forward to
working with you and your staff.
______
Prepared Statement of the Dystonia Medical Research Foundation
SUMMARY OF RECOMMENDATIONS FOR FISCAL YEAR 2014
_______________________________________________________________________
1) $32 billion for the National Institutes of Health (NIH) and
proportional increases across its institutes and centers.
2) Continue to support the Dystonia Coalition Within the Rare
Disease Clinical Research Network (RDCRN) coordinated by the Office of
Rare Diseases Research (ORDR) in the National Center for Advancing
Translational Sciences (NCATS).
3) Expand dystonia research supported by NIH through the National
Institute on Neurological Disorders and Stroke (NINDS), the National
Institute on Deafness and Other Communication Disorders (NIDCD) and the
National Eye Institute (NEI).
_______________________________________________________________________
Dystonia is a neurological movement disorder characterized by
involuntary muscle spasms that cause the body to twist, repetitively
jerk, and sustain postural deformities. Focal dystonia affects specific
parts of the body, while generalized dystonia affects multiple parts of
the body at the same time. Some forms of dystonia are genetic but
dystonia can also be caused by injury or illness. Although dystonia is
a chronic and progressive disease, it does not impact cognition,
intelligence, or shorten a person's life span. Conservative estimates
indicate that between 300,000 and 500,000 individuals suffer from some
form of dystonia in North America alone. Dystonia does not
discriminate, affecting all demographic groups. There is no known cure
for dystonia and treatment options remain limited.
Although little is known regarding the causes and onset of
dystonia, two therapies have been developed that have demonstrated a
great benefit to patients and have been particularly useful to
controlling patient symptoms. Botulinum toxin (e.g., Botox, Xeomin,
Disport and Myobloc) injections and deep brain stimulation have shown
varying degrees of success alleviating dystonia symptoms. Until a cure
is discovered, the development of management therapies such as these
remains vital, and more research is needed to fully understand the
onset and progression of the disease in order to better treat patients.
dystonia research at the national institutes of health (nih)
Currently, dystonia research supported by NIH is conducted through
the National Institute of Neurological Disorders and Stroke (NINDS),
the National Institute on Deafness and Other Communication Disorders
(NIDCD), the National Eye Institute (NEI), and the Office of Rare
Diseases Research (ORDR) within the National Center for Advancing
Translational Sciences (NCATS).
ORDR coordinates the Rare Disease Clinical Research Network (RDCRN)
which provides support for studies on the natural history,
epidemiology, diagnosis, and treatment of rare diseases. RDCRN includes
the Dystonia Coalition, a partnership between researchers, patients,
and patient advocacy groups to advance the pace of clinical research on
cervical dystonia, blepharospasm, spasmodic dysphonia, craniofacial
dystonia, and limb dystonia. The Dystonia Coalition has made tremendous
progress in preparing the patient community for clinical trials as well
as funding promising studies that hold great hope for advancing our
understanding and capacity to treat primary focal dystonias. DAN urges
the subcommittee to continue its support for the Dystonia Coalition,
part of the Rare Disease Clinical Research Network coordinated by ORDR
within NCATS.
The majority of dystonia research at NIH is conducted through
NINDS. NINDS has utilized a number of funding mechanisms in recent
years to study the causes and mechanisms of dystonia. These grants
cover a wide range of research including the genetics and genomics of
dystonia, the development of animal models of primary and secondary
dystonia, molecular and cellular studies in inherited forms of
dystonia, epidemiology studies, and brain imaging. DAN urges the
subcommittee to support NINDS in conducting and expanding critical
research on dystonia.
NIDCD and NEI also support research on dystonia. NIDCD has funded
many studies on brainstem systems and their role in spasmodic
dysphonia, or laryngeal dystonia. Spasmodic dysphonia is a form of
focal dystonia which involves involuntary spasms of the vocal cords
causing interruptions of speech and affecting voice quality. NEI
focuses some of its resources on the study of blepharospasm.
Blepharospasm is an abnormal, involuntary blinking of the eyelids which
can render a patient legally blind due to a patient's inability to open
their eyelids. DAN encourages partnerships between NINDS, NIDCD and NEI
to further dystonia research.
In summary, DAN recommends the following for fiscal year 2014:
--$32 billion for NIH and a proportional increase for its Institutes
and Centers.
--Support for the Dystonia Coalition within the Rare Diseases
Clinical Research Network coordinated by ORDR within NCATS.
--Expansion of the dystonia research portfolio at NIH through NINDS,
NIDCD, NEI, and ORDR.
THE DYSTONIA ADVOCACY NETWORK
The Dystonia Medical Research Foundation (DMRF) submits these
comments on behalf of the Dystonia Advocacy Network (DAN), a
collaborative network of five patient organizations: the Benign
Essential Blepharospasm Research Foundation, the Dystonia Medical
Research Foundation, the National Spasmodic Dysphonia Association, the
National Spasmodic Torticollis Association, and ST/Dystonia, Inc. DAN
advocates for all persons affected by dystonia and supports a
legislative agenda that meets the needs of the dystonia community.
DMRF was founded over 33 years ago. Since its inception, the goals
of DMRF have remained to advance research for more effective treatments
of dystonia and ultimately find a cure; to promote awareness and
education; and support the needs and well being of affected individuals
and their families.
Thank you for the opportunity to present the views of the dystonia
community, we look forward to providing any additional information.
______
Prepared Statement of the Eldercare Workforce Alliance
Mr. Chairman, Ranking Member Moran, and members of the
subcommittee: We are writing on behalf of the Eldercare Workforce
Alliance (EWA), which is comprised of 28 national organizations united
to address the immediate and future workforce crisis in caring for an
aging America. As the subcommittee begins consideration of funding for
programs in fiscal year 2014, the Alliance \1\ urges you to provide
adequate funding for programs designed to increase the number of health
care professionals prepared to care for America's growing senior
population and to support family caregivers in the essential role they
play in this regard.
Today's health care workforce is inadequate to meet the special
needs of older Americans, many of whom have multiple chronic physical
and mental health conditions and cognitive impairments. It is estimated
that an additional 3.5 million trained health care workers will be
needed by 2030 just to maintain the current level of access and
quality. Without a national commitment to expand training and
educational opportunities, the workforce will be even more constrained
in its ability to care for the growth in the elderly population as the
baby boom generation ages. Reflecting this urgency, the Health
Resources and Services Administration (HRSA) has identified ``enhancing
geriatric/elder care training and expertise'' as one of its top five
priorities.
Of equal importance is supporting the legions of family caregivers
who annually provide billions of hours of uncompensated care that
allows older adults to remain in their homes and communities. The
estimated economic value of family caregivers' unpaid care was
approximately $450 billion in 2009.
The number of Americans over age 65 is expected to reach 70 million
by 2030, representing a 71 percent increase from today's 41 million
older adults. That is why Title VII and Title VIII geriatrics programs
and Administration on Aging (AoA) programs that support family
caregivers are so critical to ensure that there is a skilled eldercare
workforce and knowledgeable, well-supported family caregivers available
to meet the complex and unique needs of older adults.
We hope you will support a total of $47.4 million in funding for
geriatrics programs in Title VII and Title VIII of the Public Health
Service Act and $173 million in funding for programs administered by
the Administration on Aging that support the vital role of family
caregivers in providing care for older adults. Specifically, we
recommend the following levels:
--$42.4 million for Title VII Geriatrics Health Professions Programs;
--$5 million for Title VIII Comprehensive Geriatric Education
Programs; and
--$173 million for Family Caregiver Support Programs.
Geriatrics health profession training programs are integral to
ensuring that America's healthcare workforce is prepared to care for
the Nation's rapidly expanding population of older adults. In light of
current fiscal constraints, EWA specifically requests $47.4 million in
funding for the following programs administered through the Health
Resources and Services Administration (HRSA) under Title VII and VIII
of the Public Health Service Act.
Title VII: Geriatrics Health Professions
Appropriations Request: $42.4 Million
Title VII Geriatrics Health Professions programs are the only
Federal programs that seek to increase the number of faculty with
geriatrics expertise in a variety of disciplines. These programs offer
critically important training for the healthcare workforce overall to
improve the quality of care for America's elders.
--Geriatric Academic Career Awards (GACA).--The goal of this program
is to promote the development of academic clinician educators
in geriatrics. Program Accomplishments: In the Academic Year
2011-2012, the GACA program funded 66 full-time junior faculty.
These awardees delivered over 1,000 interprofessional
continuing education courses specific to geriatric-related
topics to over 44,000 students and providers. Collectively,
awardees of the program provided a total of 32,000 hours of
instruction through continuing education courses. Additionally,
they provided 4,700 clinical trainings to providers of many
professions and disciplines throughout the academic year. HRSA,
through the Affordable Care Act (ACA), expanded the awards to
be available to more disciplines. EWA strongly supports this
expansion and requests adequate funding to make it possible.
Currently, new awardees are selected only every 5 years. To
meet the need for clinician educators in all disciplines, EWA
believes that awards should be made available to clinical
educators annually in order to develop adequate numbers of
faculty to provide geriatric instruction and training. EWA's
fiscal year 2014 request of $5.5 million will support current
GAC Awardees in their development as clinician educators.
--Geriatric Education Centers (GEC).--The goal of Geriatric Education
Centers is to provide high quality interprofessional geriatric
education and training to current members of the health
professions workforce, including geriatrics specialists and
non-specialists. Program Accomplishments: In Academic Year
2011-2012, the 45 GEC grantees developed and provided over
4,100 continuing education and clinical training offerings to
nearly 80,000 health professionals, students, faculty, and
practitioners, significantly exceeding the program's
performance target. Three quarters of the continuing education
offerings were interprofessional in focus. Of the sites that
offered clinical training sessions, almost 75 percent of these
sites were in a medically underserved community and/or Health
Professional Shortage Area. The GECs provide much needed
education and training. As part of the ACA, Congress authorized
a supplemental grant award program that will train additional
faculty through a mini-fellowship program. The program provides
training to family caregivers and direct care workers. Our
funding request of $22.7 million includes support for the core
work of 45 GECs and $2.7 million for awards to 24 GECs that
would be funded to undertake the development of mini-
fellowships under the supplemental grants program included in
ACA.
--Alzheimer's Disease Prevention, Education, and Outreach Program
(GECs).--These funds, included in the President's fiscal year
2014 budget request, will allow HRSA to expand efforts to
provide training to healthcare providers on Alzheimer's disease
and related dementias, utilizing the already existing Geriatric
Education Centers (GECs). EWA Requests $5.3 million.
--Geriatric Training Program for Physicians, Dentists, (GTPD) and
Behavioral and Mental Health Professions.--The goal of the GTPD
program is to increase the number and quality of clinical
faculty with geriatrics and cultural competence, including
retraining mid-career faculty in geriatrics. Program
Accomplishments: In Academic Year 2011-2012, a total of 63
physicians--including psychiatrists-, dentists, and
psychologists, were supported through this fellowship program.
During that year alone, fellows provided geriatric care to
older adults on 23,358 occasions. This program supports
training additional faculty in medicine, dentistry, and
behavioral and mental health so that they have the expertise,
skills, and knowledge to teach geriatrics and gerontology to
the next generation of health professionals in their
disciplines. EWA's funding request of $8.9 million will support
12 institutions to continue this important faculty development
program.
Title VIII Geriatrics Nursing Workforce Development Programs
Appropriations Request: $5 million
Title VIII programs, administered by the HRSA, are the primary
source of Federal funding for advanced education nursing, workforce
diversity, nursing faculty loan programs, nurse education, practice and
retention, comprehensive geriatric education, loan repayment, and
scholarship.
--Comprehensive Geriatric Education Program.--The goal of this
program is to provide quality geriatric education and training
to individuals caring for the elderly. Program Accomplishments:
In Academic Year 2011-2012, a total of 18 Comprehensive
Geriatric Education Program (CGEP) grantees provided a variety
of services, including over 1,700 hours of instruction to over
8,200 trainees. Topics included geriatric training for direct
care providers, palliative and end-of-life care, and health
care and older adults. This program supports additional
training for nurses who care for the elderly; development and
dissemination of curricula relating to geriatric care; training
of faculty in geriatrics; and continuing education for nurses
practicing in geriatrics.
--Traineeships for Advanced Practice Nurses.--Through the ACA, the
Comprehensive Geriatric Education Program is being expanded to
include advanced practice nurses who are pursuing long-term
care, geropsychiatric nursing, or other nursing areas that
specialize in care of older adults. EWA's funding request of $5
million will support the education and training of individuals
who provide geriatric care.
Administration on Aging: Family Caregiver Support
Appropriations Request: $172.9 million
These programs support caregivers, elders, and people with
disabilities by providing critical respite care and other support
services for family caregivers, training and recruitment of care
workers and volunteers, information and outreach, counseling, and other
supplemental services.
Family Caregiver Support Services.--This program provides a range
of support services to approximately 700,000 family and informal
caregivers annually in States, including counseling, respite care,
training, and assistance with locating services that assist family and
informal caregivers in caring for their loved ones at home for as long
as possible. EWA requests $154.5 million.
Native American Caregiver Support.--This program provides a range
of services to Native American caregivers, including information and
outreach, access assistance, individual counseling, support groups and
training, respite care and other supplemental services. EWA requests
$6.4 million.
Alzheimer's Disease Support Services.--One critical focus of this
program is to support the family caregivers who provide countless hours
of unpaid care, thereby enabling their family members with dementia to
continue living in the community. Funds will go towards evidence-based
interventions and expand the dementia-capable home and community-based
services, enabling additional older adults to live in their residence
of choice. EWA requests $9.5 million.
Lifespan Respite Care.--This program funds grants to improve the
quality of and access to respite care for family caregivers of children
or adults of any age with special needs. EWA requests $2.5 million.
On behalf of the members of the Eldercare Workforce Alliance, we
commend you on your past support for geriatric workforce programs and
ask that you join us in supporting the geriatrics workforce at this
critical time--for all older Americans deserve quality care, now and in
the future. Thank you for your consideration.
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\1\ The positions of the Eldercare Workforce Alliance reflect a
consensus of 75 percent or more of its members. This testimony reflects
the consensus of the Alliance and does not necessarily represent the
position of individual Alliance member organizations.
---------------------------------------------------------------------------
______
Prepared Statement of the Endocrine Society
The Endocrine Society is pleased to submit the following testimony
regarding fiscal year 2014 Federal appropriations for biomedical
research, with an emphasis on appropriations for the National
Institutes of Health (NIH). The Endocrine Society is the world's
largest and most active professional organization of endocrinologists
representing more than 16,000 members worldwide. Our organization is
dedicated to promoting excellence in research, education, and clinical
practice in the field of endocrinology. The Society's membership
includes thousands of researchers who depend on Federal support for
their careers and their scientific advances. The Endocrine Society
recommends that NIH receive at least $32 billion in fiscal year 2014.
This funding recommendation represents the minimum investment necessary
to avoid further erosion of national research priorities and global
preeminence, while allowing the NIH's budget to keep pace with
biomedical inflation.
A half century of sustained investment by the United States Federal
Government in biomedical research has dramatically advanced the health
and improved the lives of the American people. The NIH specifically has
had a significant impact on the United States' global preeminence in
research and fostered the development of a biomedical research
enterprise that remains unrivaled throughout the world. However, the
preeminence of the U.S. research enterprise is being tested due to
consistently flat funding for Federal research agencies coupled with
the increasing cost of conducting basic biomedical research. Meanwhile,
emerging economies such as China and India continue to recognize the
importance of investing in scientific research. China's R&D spending is
expected to increase by 11.6 percent in the coming year while India's
spending for R&D is expected to rise by nearly 12 percent, keeping pace
with the past several years.\1\
The societal benefits of biomedical research, from improvements in
diabetes care to personalized genomics, include treatments,
technologies, and cures that extend lifespan and improve quality of
life. The foundation for these benefits is the NIH research grants that
support the basic research done by scientists. Since 2004, the number
of NIH research grants to scientists in the United States has been
declining. Consequently, the likelihood of a scientist successfully
being awarded a grant has dropped from 31.5 percent in 2000 to 17.6
percent in 2012; this means that experienced scientists are
increasingly spending time writing fruitless grant applications instead
of applying their expertise to productive research. Meanwhile younger,
highly skilled Ph.D. holders struggle to find a job in the United
States that makes use of the unique skills generated during graduate
education. The Chinese Government, in contrast, has created incentives
to draw biomedical researchers to institutions in China.\2\ The
potential loss of technical skills and knowledge generated by the
investment of resources in training could reduce the long-term
international competitiveness of the United States and result in
innovative new biomedical therapeutics being developed in other
countries.
The United States cannot afford to fall further behind while the
rising burden of chronic disease (now at 75 percent of total healthcare
expenditure) places a tremendous strain on the national economy. Nearly
half of all Americans have a chronic medical condition, and these
diseases now cause more than half of all deaths worldwide. Deaths
attributed to chronic conditions could reach 36 million by 2015 if the
trend continues unabated. In order to prevent and treat these diseases,
and save the country billions in healthcare costs, significant
investment in biomedical research will be needed. The national cost of
diabetes in 2012 is estimated at $245 billion,\3\ while the cost of
obesity has been estimated at $147 billion; \4\ many Endocrine Society
members study these diseases and stand ready to conduct valuable
research to improve care and reduce the financial burden of disease. To
do so, however, they require funding from the NIH.
Besides improving healthcare delivery and reducing costs, basic
biomedical research represents a source of new wealth for the Nation
and jobs for its citizens. The translation of new knowledge into
innovative products can be shown by the frequency in which patents are
granted to University researchers. Data compiled by the Association of
University Technology Managers (AUTM) shows that academic research
institutions were issued 4,700 patents in 2011. These patents can then
be used to form the intellectual property foundation for a startup, or
licensed to a large company to generate future revenue streams from the
patented technology. In 2011, AUTM reported 4899 university
technologies were licensed to companies, demonstrating the potential
economic value of the products of federally-funded basic research to
private companies. Basic research at academic universities and research
institutions, funded in part by NIH, generated 617 startup companies
and 591 new commercial products in 2011 alone. AUTM also reported $36
billion in net product sales generated from university-initiated
companies, while recent startups reported supporting nearly 25,000
jobs. From 1996 to 2007, a ``moderately conservative estimate'' yields
a total contribution to GDP for this period of more than $82 billion
\5\ from university technologies.
Because the financial risks associated with basic biomedical
research projects are high, and the economic realization of an
investment in biomedical research could take years to decades, private
sector businesses are unlikely to make the financial commitments
necessary to support basic biomedical research. The private sector, in
fact, ``cannot appropriate the benefits such research generates,
particularly at the early, basic stages of the research process''.\6\
Consequently, the private sector investment in basic science represents
only 20 percent of the total national investment. While the private
sector investment in applied research and development is much greater,
basic research represents the crucial first step in the process of
developing an innovative biomedical product. Indeed, Congress has
acknowledged the critical and unique role of the Government in funding
basic research to realize the unique and powerful economic benefits to
society.\7\
The past year alone has seen astonishing medical breakthroughs from
NIH funded research, such as advances in HIV prevention and genomic
characterization of cancer cells. Endocrinologists have made
discoveries on the link between birth order and diabetes risk, the
generational effects of BPA exposure, and the relationship between a
mother's vitamin D levels and infant health. A member of The Endocrine
Society, Robert Lefkowitz, was one of two recipients of the 2012 Nobel
Prize in Chemistry for his work on hormone receptors. The NIH has
exciting programs for the future, including a collaboration to develop
``3-D human tissue chips containing bio-engineered tissue models that
mimic human physiology . . . to use these chips to better predict the
safety and effectiveness of candidate drugs.'' \8\ Members of The
Endocrine Society will continue to conduct important work, including
research on the public health impact of chronic disease and endocrine-
disrupting chemicals. These projects, however, may not come to fruition
if the current NIH budget, and the cut from sequestration, remain in
place.
The direct effects of the cut to the NIH and NSF budgets from
sequestration are now just beginning to manifest after 2 months.
Stories are emerging about how sequestration will delay, or stop
entirely, research projects critical to our understanding of disease
and prevention. Endocrine Society member Rebecca Riggins, Ph.D., has
been forced to delay indefinitely an analysis of tumor samples to
investigate why certain types of breast cancer respond differently to
treatment with Tamoxifen.\9\ Sequestration is also forcing universities
such as Vanderbilt University and the University of Florida, who stand
to lose millions in Federal research dollars, to reduce the number of
graduate students accepted into Ph.D. programs for the upcoming
academic year.\10\ \11\ Stories such as these will become more common
unless the Federal Government acts to prioritize the national
investment in basic research in fiscal year 2014.
The Endocrine Society remains deeply concerned about the future of
biomedical research in the United States without sustained support from
the Federal Government. Flat funding in recent years, combined with the
impact of sequestration, threaten the Nation's scientific enterprise
and make the fiscal year 2014 appropriations for agencies that fund
science increasingly important. The Society strongly supports increased
Federal funding for biomedical research in order to provide the
additional resources needed to enable American scientists to address
scientific opportunities and maintain the country's status of the
preeminent research enterprise. The Endocrine Society therefore
recommends that NIH receive at least $32 billion in fiscal year 2014.
---------------------------------------------------------------------------
\1\ ``Global R&D Funding Forecast 2013.'' Battelle.
\2\ ``Building a World-Class Innovative Therapeutic Biologics
Industry in China''--China Association of Enterprises with Foreign
Investment R&D-based Pharmaceutical Association Committee, in
coordination with The Biotechnology Industry Organization and the
support of The Boston Consulting Group.
\3\ ``Economic Costs of Diabetes in the U.S. in 2012''--American
Diabetes Association.
\4\ Finkelstein, EA, Trogdon, JG, Cohen, JW, and Dietz, W. ``Annual
medical spending attributable to obesity: Payer- and service-specific
estimates.'' Health Affairs 2009; 28(5): w822-w831.
\5\ ``The Economic Impact of Licensed Commercialized Inventions
Originating in University Research, 1996-2007.'' Biotechnology Industry
Organization, September 2009.
\6\ ``An Economic Engine: NIH Research, Employment and the Future
of the Medical Innovation Sector.'' United for Medical Research, May
2011.
\7\ ``The Pivotal Role of Government Investment in Basic Research--
Report by the U.S. Congress Joint Economic Committee.'' May 2010.
\8\ http://www.ncats.nih.gov/research/reengineering/tissue-chip/
funding/funding.html (accessed March 12, 2013).
\9\ Marder, J., ``Sequester Cuts to Science Slow Biomedical
Research.'' PBS Newshour, Science Wednesday. April 3, 2013. http://
www.pbs.org/newshour/rundown/2013/04/sequester-cuts-to-science-puts-
medical-resarch-on-hold.html (Accessed April 25, 2013).
\10\ Smith-Barrow, D., ``What Graduate Students Should Know About
the Sequester.'' U.S. News, April 1, 2013. http://www.usnews.com/
education/best-graduate-schools/articles/2013/04/01/what-graduate-
students-should-know-about-the-sequester (Accessed April 24, 2013).
\11\ Schweers, J., ``UF's flow of research dollars may slow to
trickle.'' The Gainsville Sun, March 30, 2013. http://
www.gainesville.com/article/20130330/ARTICLES/130339981?p=1&tc=pg
(Accessed April 25, 2013).
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______
Prepared Statement of the Epilepsy Foundation of America
Thank you, Chairman Harkin and Ranking Member Moran, for allowing
me to testify on behalf of the more than 2.2 million Americans living
with epilepsy and their families, including my own. Specifically, I
want to express my support for continued funding for critical epilepsy
public health programs at the Centers for Disease Control and
Prevention (CDC) and the Health Resources and Services Administration
(HRSA), as well as funding for epilepsy research at the National
Institutes of Health.
Epilepsy is the Nation's fourth most common neurological disorder,
after migraine, stroke, and Alzheimer's disease; making it an important
public health condition. Epilepsy is a complex spectrum of disorders--
sometimes called the epilepsies--that affects millions of people in a
variety of ways and is characterized by unpredictable seizures that
differ in type, cause, and severity. Yet living with epilepsy is about
much more than just seizures. For people with epilepsy, the disorder is
often defined in practical terms, such as challenges in school,
uncertainties about social situations and employment, limitations on
driving, and questions about independent living. Approximately 1 in 26
people will develop epilepsy at some point in their lives, and the
onset of epilepsy is highest in children and older adults.
In October, 2012, the Epilepsy Foundation began a merger with the
Epilepsy Therapy Project to create a unified organization driving
education, awareness, support, and new therapies for people and
families living with epilepsy. This merger became effective on January
1st and brings together the mission and assets of both organizations,
including www.epilepsy.com, the leading portal for people, caregivers,
and professionals dealing with epilepsy; 47 affiliated Epilepsy
Foundations around the country dedicated to providing free programs and
services to people living with epilepsy and their loved ones;
scientific, professional, and business advisory boards comprised of
leading epilepsy physicians, health care professionals and researchers,
industry professionals, and investors with experience in clinical care,
as well as in the evaluation and commercialization of new therapies; a
track record of identifying and supporting important new science,
translational research programs, and the most promising new therapies;
and the Epilepsy Pipeline Conference, a leading global forum organized
in partnership with the Epilepsy Study Consortium that showcases the
most exciting new drugs, devices, and therapies.
The Epilepsy Foundation has long realized that epilepsy should be a
priority for the Federal public health system, and that public health
programs can help build safer communities, end stigma and
discrimination associated with epilepsy, educate community leaders, and
build awareness that benefits everyone with epilepsy and other chronic
health conditions. Stigma surrounding epilepsy continues to fuel
discrimination and isolates people with epilepsy from the mainstream of
life. Among older children and adults, epilepsy remains a formidable
barrier to educational opportunities, employment, and personal
fulfillment. There is a continuing need to better understand the public
health impact of the condition, promote initiatives that encourage
self-management, and improve mental health. Meeting these needs will
help create an environment in which people will feel free to disclose
their epilepsy or seizures without fear of discrimination or reprisal.
The Epilepsy Foundation was pleased to participate in the 2012
Institute of Medicine report: Epilepsy Across the Spectrum: Promoting
Health and Understanding. We believe that many of the 13
recommendations from the report reinforce the need for public health
programs that help people with epilepsy access the best care and the
importance of a health care workforce that is educated about seizures
and epilepsy.
The CDC is the lead Federal agency for protecting the people's
health and safety. It is responsible for providing credible information
to enhance health decisions and for promoting health through strong
partnerships. The 2012 Institute of Medicine report calls upon the CDC
to continue and expand collaborative surveillance and data collection,
and we strongly support this recommendation to improve epilepsy
surveillance within the CDC. The report also calls on the CDC to work
with the Epilepsy Foundation and its affiliates to enhance educational
and community services for people with epilepsy.
The CDC epilepsy program focuses on better understanding the
epidemiology and impacts of epilepsy, developing and bringing
interventions to the public that improve quality of life for people
with epilepsy, and working with partners to change systems and
environments to better support those living with this neurological
condition. CDC collaborates with partners to improve public awareness
and promote education and communication at local and national levels.
Programs focus on law enforcement and emergency medical responders,
school-based students and staff, seniors, unemployed and underemployed
adults, and underserved minorities living with epilepsy.
The Epilepsy Foundation strongly believes that not only should the
CDC program maintain its current funding to continue the quality
programs that help address care and eliminate stigma, but also that is
should receive additional funding to fulfill the recommendations and
the investment of the IOM report and take advantage of the research and
guidance that the report provides.
HRSA directs national health programs that improve the Nation's
health by assuring equitable access to comprehensive quality health
care for all. HRSA promotes a community-based system of services
mandated for all children with special health care needs; supports
programs that are designed to break down barriers to community living
for people with disabilities; and provides primary health care to
medically underserved people. The 2012 Institute of Medicine report
also calls upon stakeholders like the Foundation and HRSA to identify
needs and improve community services for underserved populations. We
believe that Project Access is an important part of meeting that goal
and fully support the work of HRSA to empower families in health
decisionmaking, promote medical home models, support access to health
care, increase early health care screenings, and facilitate transition
for youth to improved healthy and independent lives.
Project Access is a national effort which involves State agencies,
physicians and other health care providers, families, schools, and
community resources to implement demonstration projects in medically
underserved areas to improve health care outcomes and access for
children with epilepsy. Demonstration projects have been conducted in
California, Washington, D.C., Wisconsin, New Jersey, Mississippi,
Illinois, West Virginia, Alaska, Nevada, Wyoming, Washington, New
Hampshire, Maine, Florida, New York and Oregon. These projects not only
serve needs of an important public health condition like epilepsy, but
can serve as a model for other chronic health conditions and
disabilities.
The Epilepsy Foundation understands the financial constraints
facing our Nation today. We encourage Congress to continue funding for
critical epilepsy public health programs at the Centers for Disease
Control and Prevention and the Health Resources and Services
Administration. We also urge Congress to not abandon research
initiatives that have been partially funded at the National Institutes
of Health, and to support funding for a cure and better treatments for
epilepsy.
Thank you for your consideration of this critical issue.
______
Prepared Statement of the Federation of American Societies for
Experimental Biology
The Federation of American Societies for Experimental Biology
(FASEB) respectfully requests a fiscal year 2014 appropriation of no
less than $32 billion for the National Institutes of Health (NIH) to
prevent further erosion of the Nation's capacity for biomedical
research and provide funding for additional grantees.
As a federation of 26 scientific societies, FASEB represents more
than 100,000 life scientists and engineers, making it the largest
coalition of biomedical research associations in the United States.
FASEB's mission is to advance health and welfare by promoting progress
and education in biological and biomedical sciences, including the
research funded by NIH, through service to its member societies and
collaborative advocacy. FASEB enhances the ability of scientists and
engineers to improve--through their research--the health, well-being,
and productivity of all people.
Research funded by the National Institutes of Health (NIH) has
produced an outstanding legacy, and American leadership in biomedical
research has made us the envy of the world. Eighty-five percent of NIH
funds are distributed through competitive grants to more than 300,000
scientists who work at universities, medical schools, and other
research institutions in nearly every congressional district in the
United States. NIH researchers developed the first screening test that
reduced mortality from lung cancer, sponsored clinical trials to
significantly reduce transmission of Human Immunodeficiency Virus from
mother to child, uncovered the precise cause of more than 4,500 rare
diseases, and completed a ten-year diet and exercise study showing how
we can reduce the incidence of type 2 diabetes among high-risk people
by more than 30 percent. Many of these advances arose from
investigations designed to explain basic molecular, cellular, and
biological mechanisms.
More recently, NIH has supported research that led to breakthroughs
in:
--Preventing Colon Cancer Deaths.--A study funded primarily by the
National Cancer Institute found that removing polyps (abnormal
growths) during colonoscopy can not only prevent colorectal
cancer, but also reduce the chance of death from the disease by
53 percent. Colorectal cancer is one of the most common cancers
in both men and women nationwide and colonoscopies can detect
early-stage cancer before symptoms develop, allowing doctors to
remove any polyps. Early detection is important because
treatments are more likely to succeed if the disease is caught
before it takes hold. This study provides strong evidence of
the long-term benefit of removing polyps and supports continued
screening for colorectal cancer in individuals over age 50.
--Offering New Hope For Children With An Immunodeficiency Disorder.--
Researchers supported by the National Human Genome Research
Institute and the National Heart, Lung and Blood Institute
discovered that gene therapy can safely restore immune function
in children with severe combined immunodeficiency (SCID), a
disorder that leaves patients susceptible to a wide range of
infections because they cannot produce healthy white blood
cells. Most children with SCID die by the age of two if left
untreated. Previously available treatments relied on expensive
enzyme replacement injections that had to be continued
throughout the child's life. A clinical trial found that gene
therapy using the patient's own stem cells and low-dose
chemotherapy was effective in eliminating the need for enzyme
replacement therapy and leading to long-term improved health. A
second phase of the trial is now underway.
--Repurposing Older Drugs to Treat Alzheimer's.--Bexarotene, a drug
that has been available for 10 years to treat skin cancer,
rapidly reduced beta-amyloid levels in the brains of mice of
all ages and shrank amyloid deposits known as plaques in most
age groups. Abnormally high levels of beta-amyloid have been
found in the brains of individuals with the most common, late-
onset form of Alzheimer's disease. This NIH-funded study also
found that Bexarotene restored cognition and memory in mice and
improved the animals' ability to sense and respond to odors.
Loss of smell is often a first symptom of Alzheimer's in
humans.
Sustained Funding is Critical in Order to Capitalize on New Scientific
Opportunities
The broad program of research supported by NIH is essential for
advancing our understanding of basic biological functions, reducing
human suffering, and protecting the country against new and re-emerging
disease threats. Biomedical research is also a primary source of new
innovations in health care and other areas.
Exciting new NIH initiatives are poised to accelerate our progress
in the search for cures. It would be tragic if we could not capitalize
on the many opportunities before us. The development of a universal
vaccine to protect adults and children against both seasonal and
pandemic flu and development of gene chips and DNA sequencing
technologies that can predict risk for high blood pressure, kidney
disease, diabetes, and obesity are just a few of the research
breakthroughs that will be delayed if we fail to sustain the investment
in NIH.
As a result of our prior investment, we are the world leader in
biomedical research. We should not abdicate our competitive edge.
Without adequate funding, NIH will have to sacrifice valuable lines of
research. The termination of ongoing studies and the diminished
availability of grant support will result in the closure of
laboratories and the loss of highly skilled jobs. At a time when we are
trying to encourage more students to pursue science and engineering
studies, talented young scientists are being driven from science by the
disruption of their training and lack of career opportunities.
Rising costs of research, the increasing complexity of the
scientific enterprise, and a loss of purchasing power at NIH due to
flat budgets have made it increasingly competitive for individual
investigators to obtain funding. In addition, the $1.6 billion in cuts
to NIH due to the sequestration mandated by the Budget Control act will
exacerbate the current challenges facing the research community. Today,
only one in six grant applications will be supported, the lowest rate
in NIH history. Increasing the NIH budget to $32.0 billion would
provide the agency with an additional $1.360 billion which could
restore funding for R01 grants (multi-year awards to investigators for
specified projects) back to the level achieved in 2003 and support an
additional 1,700 researchers while still providing much needed
financial support for other critical areas of the NIH portfolio.
Federal Investment in Research is Essential to Drive Innovation in the
Private Sector
The Federal Government has a unique role in supporting research.
Scientists and engineers in every State are hard at work creating the
knowledge that will improve health, energy independence, agricultural
productivity, and provide the foundation for new industries.\1\ No
other public, corporate or charitable entity is willing or able to
provide broad and sustained funding for cutting edge science and
engineering that will yield new innovations and technologies of the
future. This is particularly critical for basic research, which is the
source of profound and paradigm-shifting discoveries. While we are
certain such discoveries will be made, there are no sign-posts for
where and when the next major breakthrough will occur. The breadth of
investment required has become too daunting for most of the commercial
companies that develop new products from findings from investments in
fundamental research, to say nothing of those enterprises yet to be
created.
To prevent further erosion of the Nation's capacity for biomedical
research, FASEB recommends an appropriation of no less than $32.0
billion for NIH in fiscal year 2014 to ensure the stability of the
research enterprise and provide funding for additional grantees.
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______
Prepared Statement of the Friends of the National Institute of Child
Health and Human Development
My name is Kathryn Schubert. I currently serve as Chair of the
Friends of the National Institute of Child Health and Human Development
(NICHD). On behalf of the Friends, I urge the Labor, Health and Human
Services, Education Appropriations Subcommittee to support at least $32
billion for the NIH, including $1.37 billion for NICHD for fiscal year
2014. Our coalition includes over 100 organizations representing
scientists, physicians, health care providers, patients and parents
concerned with the health and welfare of women, children, families, and
people with disabilities. We are pleased to support the extraordinary
work of the Eunice Kennedy Shriver National Institute of Child Health
and Human Development (NICHD).
Since its establishment in 1963, NICHD has achieved great success
in meeting the objectives of its broad biomedical and behavioral
research mission, which includes research on child development before
and after birth; maternal, child, and family health; learning and
language development; reproductive biology and population issues; and
medical rehabilitation. With sufficient resources, NICHD could build
upon the promising initiatives described in this testimony and produce
new insights into human development and solutions to health and
developmental problems throughout the world, including families in your
districts. Scientific breakthroughs supported by NICHD serve to prevent
and treat many of the Nation's most devastating health problems
including infant mortality and low birthweight, birth defects,
intellectual and developmental disabilities, and the reproductive and
gynecologic health of women throughout their lifespan, among others.
Some of these are described below.
Preterm Birth.--NICHD supports a comprehensive research program to
study the causes of preterm birth and prevention strategies and
treatment regimens. Pre-term birth costs our Nation $26 billion
annually and is a leading cause of infant mortality and intellectual
and physical disabilities. Continued prioritization of extramural
preterm birth prevention research, the Maternal-Fetal Medicine Units
Network, the Neonatal Research Network and intramural research program
related to prematurity are necessary to further this work. Resources
also should be available to support transdisiplinary science as
recommended in NICHD's Scientific Vision to study and identify the
complex causes of preterm birth.
Newborn Screening.--Millions of babies in the U.S. are routinely
screened for conditions that can affect a child's long-term health or
survival each year. Early detection, diagnosis, and intervention can
prevent death or disability. NICHD's newborn screening program aims to
identify additional conditions to screen for, develop and test better
ways to screen for conditions, study treatments and ways to improve
outcomes, and sponsor research and training programs related to newborn
screening. These initiatives are accelerating research in diseases
related to newborn screening and greatly improving the process by which
public health decisions are made.
National Children's Study (NCS).--The NCS is the largest and most
comprehensive study of children's health and development ever planned
in the United States. We thank the Committee for funding the NCS
through the NIH Office of the Director and urge funding at the current
level, which will allow for a science-based study design and
recruitment strategy for roll-out of the main study. When fully
implemented, the NCS will follow a representative sample of 100,000
children from across the U.S. from before birth until age 21, and data
generated will inform the work of scientists in universities and
research organizations, helping them identify precursors to disease and
to develop new strategies for prevention and treatment.
Brain Development.--Research on learning disabilities--neurological
disorders that can make it difficult to acquire certain academic and
social skills--shows that they can be prevented through effective
evidence-based programs in school and that when children improve their
reading and math skills, brain function normalizes.
Behavioral Research.--We support and commend the advances NICHD has
made in examining normative child development and the critical impact
of stress in altering a child's developmental trajectories. Recent
discoveries show that chronic stress from a number of factors including
poverty, exposure to violence, child maltreatment and neglect and
ethnic minority status may all hamper a child's potential to optimize
their social and emotional development and academic achievement.
Sufficient resources could go toward longitudinal research that is
needed to understand the long-term impact of stress on mental health
outcomes, cognitive, emotional and social development, including self-
control, inhibitory response, executive functioning, attention, memory
and learning skills and how those variables impact later adolescent
health behaviors, childhood obesity and academic achievement.
Contraceptive Research and Development.--NICHD's leadership in
ensuring acceptability and effective use of existing products in
various settings and populations and in addressing behavioral issues
related to fertility and contraceptive use will lead to opportunities
and priorities in the future, including evaluation of the safety and
effectiveness of hormonal contraceptive options for women who are
overweight or obese. NICHD contraceptive development is critical for
producing new contraceptive modalities that offer couples options with
fewer side-effects and address women's concerns about contraceptive
use. Opportunities in contraceptive development include the need for
non-hormonal contraception, peri-coital contraception and multipurpose
prevention technologies that would prevent both pregnancy and sexually
transmitted infections.
Reproductive Sciences.--NICHD's research in developing innovative
medical therapies and technologies have improved existing treatment
options for gynecological conditions affecting overall health and
fertility. Future work could focus on serious conditions that have been
overlooked and underfunded although they impact many women, such as
infertility research into the need for treatments for disorders such as
endometriosis, polycystic ovarian syndrome (PCOS) and uterine fibroids
which can prevent couples from achieving desired pregnancies.
Pelvic Floor Disorders Network (PFDN).--Female pelvic floor
disorders (PFD) represent an under-appreciated but major public health
burden with high prevalence, impaired quality of life and substantial
economic costs affecting approximately 25 percent of American women.
The PFDN is conducting research to improve treatment of these extremely
painful gynecological conditions. Current research is aimed at
improving female urinary incontinence outcome measures and ensuring
high quality patient-centered outcomes.
Development of the Research Workforce.--NICHD's Women's
Reproductive Health Research (WRHR) Program and Reproductive Scientist
Development Program (RSDP), both aimed at obstetrician-gynecologists to
further their education and experience in basic, translational, and
clinical research or for those studying cellular and/molecular biology
and genetics and related fundamental sciences provide training grants
to hundreds of researchers and providing new insight into a host of
diseases, such as ovarian cancer. Continued investment in medical
research is critical to making major scientific advances. Studies show
that overall levels of research funding influence career choice, making
these investments even more important.
Sudden Unexpected Infant Death (SUID) and Stillbirth.--SUID and
stillbirth result in the loss of more than 30,000 babies annually.
Unsafe infant sleep environments are the major cause of SUID/SIDS
deaths for babies between 1 month and 1 year of age and are largely
preventable through educational outreach. We support prioritization of
the Institute's newly expanded ``Safe to Sleep'' Campaign and continued
research to discern the physiological basis of vulnerability to SIDS.
Opportunities for research into late term unexplained losses and
prioritization of prevention related to stillbirth risk factors and
indicators such as maternal obesity and fetal growth restriction could
be taken by convening an Interagency Consensus Group on Stillbirth to
discuss the State of Science.
Eosinophil-Associated Disorders.--These disorders can cause
painful, debilitating conditions in children, many of whom are unable
to eat normal food due to severe reactions. The NIH Task Force on the
Research Needs of Eosinophil-Associated Diseases issued a report
earlier this year highlighting the need for studies to improve the
diagnosis and treatment of these incurable diseases, in which NICHD can
play a leading role.
Children's Cardiomyopathy.--Cardiomyopathy is a chronic disease of
the heart muscle, which can be hard to detect or misdiagnosed with
tragic outcomes in children. In some cases, sudden cardiac arrest is
the first symptom of the disease. NICHD has an opportunity to
understand the genetic and environmental causes and to explore drugs
specific to children, and to generate public awareness materials.
Best Pharmaceuticals for Children Act (BPCA).--NICHD funds
meaningful research into pediatric pharmacology and we urge its
continued funding for this along with training the next generation of
pediatric clinical investigators. With NICHD's leadership, NIH should
improve data collection and reporting related to the numbers of
children who participate in NIH-funded trials. Age reporting is
currently insufficient to determine if children are appropriately
represented in trials pertaining to child health.
Population Research.--The NICHD Population Dynamics branch supports
a diverse portfolio of scientific research and research training
programs, exploring the social, economic and health-related impacts of
population change on families, children, and communities. The branch is
well respected for investing wisely in the development of longitudinal,
representative surveys, providing scientists with reliable data that
can be used to examine the influence of early life course events on
long-term health and achievement outcomes in particular. As an example,
in 2012, NICHD-supported demographers using data from the Panel Study
of Income Dynamics survey found that growing up in poor neighborhoods
throughout the entire childhood life course can have a devastating
effect on educational attainment. In another study, using data from the
National Study of Adolescent Health, researchers found that women who
are overweight or obese years during the transition from adolescence to
adulthood are more likely to later deliver babies with a higher birth
weight, putting the next generation at a higher risk of obesity-related
health outcomes.
These research efforts have made significant contributions to the
well-being of all Americans, but there is still much to discover. We
support the NICHD's recently released Scientific Vision and urge you to
support NICHD at funding levels that meet current needs for addressing
health issues across the lifespan. Thank you for your consideration and
we look forward to working with you on these critical issues.
______
Prepared Statement of the Friends of the Health Resources and Services
Administration
The Friends of HRSA is a non-profit and non-partisan coalition of
more than 175 national organizations dedicated to ensuring that our
Nation's medically underserved populations have access to high-quality
primary and preventive care. The coalition represents millions of
public health and health care professionals, academicians and consumers
invested in HRSA's mission to improve health and achieve health equity.
We recommend funding of at least $7.0 billion for discretionary HRSA
programs in fiscal year 2014.
The recommended funding level takes into account the need to reduce
the Nation's deficit while prioritizing the immediate and long-term
health needs of Americans. We are deeply concerned with the failure to
avert the sequester that will cut over $311 million from HRSA's fiscal
year 2013 discretionary funding. These cuts come on top of the 17
percent or more than $1.2 billion reduction to HRSA's budget authority
since fiscal year 2010. HRSA's ability to prevent sickness, keep people
healthy and treat illness or injury for millions of Americans will be
severely compromised, by across-the-board cuts if the sequester is not
reversed and the cuts restored. It is estimated that 7,400 fewer
patients will have access to HRSA's AIDS Drug Assistance Program that
provides life-saving HIV medications and about 25,000 fewer breast and
cervical cancer screenings will be offered for poor, high-risk women,
an important tool to reduce death rates, improve treatment options and
greatly increase survival. Our recommended funding level is necessary
to ensure HRSA is able to implement essential public health programs
including training for public health and health care professionals,
providing primary care services through health centers, improving
access to care for rural communities, supporting maternal and child
health care programs and providing health care to people living with
HIV/AIDS.
HRSA is a national leader in providing health services for
individuals and families. HRSA's programs are carried out by about
3,100 grantees in every State and U.S. territory, working to improve
the health of people who are primarily low-income, medically vulnerable
and geographically isolated through access to quality services and a
skilled health care workforce. The agency operates about 80 different
programs, working to serve roughly 55 million Americans who are
uninsured and more than 60 million Americans who live in communities
where primary health care services are scarce. In addition to
delivering much needed services, the programs provide an important
source of local employment and economic growth in many low-income
communities.
Our request is based on the need to continue improving the health
of Americans by supporting critical HRSA programs including:
--Health professions programs support the education and training of
primary care physicians, nurses, dentists, optometrists,
physician assistants, nurse practitioners, clinical nurse
specialists, public health personnel, mental and behavioral
health professionals, pharmacists and other allied health
providers. With a focus on primary care and training in
interdisciplinary, community-based settings, these are the only
Federal programs focused on filling the gaps in the supply of
health professionals, as well as improving the distribution and
diversity of the workforce so health professionals are well-
equipped to care for the Nation's growing, aging and
increasingly diverse population. For example, HRSA offers loan
repayment and scholarships to nurses who work in areas
experiencing critical shortages of nurses. This investment has
increased the number of nurses working in communities with the
greatest need by three fold--from about 1,000 to 3,000--since
2008.
--Primary care programs support nearly 8,900 community health centers
and clinics in every State and territory, improving access to
preventive and primary care to more than 20 million patients in
geographically isolated and economically distressed
communities. Close to half of the health centers serve rural
populations. The health centers coordinate a full spectrum of
health services including medical, dental, behavioral and
social services--often delivering the range of services in one
location. In addition, health centers target populations with
special needs, including migrant and seasonal farm workers,
homeless individuals and families and those living in public
housing.
--Maternal and child health programs, including the Title V Maternal
and Child Health Block Grant, Healthy Start and others, support
a myriad of initiatives designed to promote optimal health,
reduce disparities, combat infant mortality, prevent chronic
conditions and improve access to quality health care for more
than 40 million women and children. Maternal and Child Health
Block Grants provide services to 6 out of every 10 women who
give birth and their infants. Since Title V was established in
1935, the infant mortality rate has declined nearly 90 percent
and contributed to a 51 percent decline in the U.S. child
fatality rate from unintentional injuries since 1987. Today,
MCH programs help assure that nearly 100 percent of babies born
in the U.S. are screened for a range of serious genetic or
metabolic diseases and that a community-based system of family
centered services is available for coordinated long-term follow
up for babies with a positive screen and for all children with
special health care needs.
--HIV/AIDS programs provide the largest source of Federal
discretionary funding assistance to States and communities most
severely affected by HIV/AIDS. The Ryan White HIV/AIDS Program
delivers comprehensive care, prescription drug assistance and
support services for more than half a million low-income people
impacted by HIV/AIDS, which accounts for roughly half of the
total population living with the disease in the U.S.
Additionally, the programs provide education and training for
health professionals treating people with HIV/AIDS and work
toward addressing the disproportionate impact of HIV/AIDS on
racial and ethnic minorities.
--Family planning Title X services ensure access to a broad range of
reproductive, sexual and related preventive health care for
over 5 million poor and low-income women, men and adolescents
at nearly 4,400 health centers nationwide. Health care services
include patient education and counseling, cervical and breast
cancer screening, sexually transmitted disease prevention
education, testing and referral, as well as pregnancy diagnosis
and counseling. This program helps improve maternal and child
health outcomes and promotes healthy families. Often, Title X
service sites provide the only continuing source of health care
and education for many individuals.
--Rural health programs improve access to care for people living in
rural areas where there are a shortage of health care services.
The Office of Rural Health Policy serves as the Department of
Health and Human Services' primary voice for programs and
research on rural health issues. Rural Health Outreach and
Network Development Grants, Rural Health Research Centers,
Rural and Community Access to Emergency Devices Program and
other programs are designed to support community-based disease
prevention and health promotion projects, help rural hospitals
and clinics implement new technologies and strategies and build
health system capacity in rural and frontier areas.
--Special programs include the Organ Procurement and Transplantation
Network, the National Marrow Donor Program, the C.W. Bill Young
Cell Transplantation Program and National Cord Blood Inventory.
These programs maintain and facilitate organ marrow and cord
blood donation, transplantation and research, along with
efforts to promote awareness and increase organ donation rates.
Over the past 20 years, 25,000 individuals have been given a
second chance at life from receiving blood cells, including
bone marrow, blood and cord blood, given by living donors
unrelated to their recipients.
We urge you to consider HRSA's role in strengthening the Nation's
health safety net programs and ensuring that vulnerable populations
receive quality health services. By supporting, planning for and
adapting to change within our health care system, we can build on the
successes of the past and address new gaps that may emerge in the
future. We advise that you to adopt our fiscal year 2014 request of
$7.0 billion for discretionary HRSA programs to meet the public health
needs and we thank you for the opportunity to submit our recommendation
to the subcommittee.
______
Prepared Statement of the Friends of the National Institute on Aging
(NIA)
Senator Mikulski, Senator Cochran and members of the subcommittee,
this testimony is being submitted on behalf of the Friends of the
National Institute on Aging (FoNIA), a coalition of over 50 academic,
patient-centered and not-for-profit organizations that conduct, fund or
advocate for scientific endeavors to improve the health and quality of
life for people as they age. We appreciate the opportunity to provide
testimony in support of the National Institute on Aging (NIA) and to
comment on the need for sustained, long-term growth in aging research.
Considering the resources the Federal Government spends on the health
care costs associated with age-related diseases, we feel it makes sound
economic sense to increase Federal resources for aging research.
Specifically, given the unique funding challenges facing the NIA, and
the range of promising scientific opportunities in the field of aging
research, the FoNIA recommends $1.4 billion in fiscal year 2014 for
NIA. In addition, to ensure that progress in the Nation's biomedical,
social, and behavioral research continues, the Coalition also endorses
the Ad Hoc Group for Medical Research in supporting $32 billion for NIH
in fiscal year 2014.
The NIA leads the national scientific effort to understand the
nature of aging in order to promote the health and well-being of older
adults whose numbers are projected to increase dramatically in the
coming years due to increased life expectancy and the aging of the baby
boom generation. According to the U.S. Census Bureau, the number of
people age 65 and older will more than double between 2010 and 2050 to
88.5 million or 20 percent of the population; and those 85 and older
will increase threefold, to 19 million. As the 65+ population
increases, so will the prevalence of diseases disproportionately
affecting older people--most notably, Alzheimer's disease (AD). NIA is
the primary Federal agency responsible for (AD) research and receives
nearly 70 percent of the NIH Alzheimer's disease research funding. Yet,
we know that as many as 5 million Americans aged 65 years and older may
have AD with a predicted increase to 13.2 million by 2050 (Hebert,
Weuve, Scherr, et al, 2013). Last year, NIA led the AD Research Summit,
which brought together officials representing Federal agencies,
scientific researchers, providers, caregivers, patients and their
families to develop final recommendations to the National Alzheimer's
Project Act Advisory Council. NIA also supported research that
identified relevant AD biomarkers through the groundbreaking
Alzheimer's Disease Neuroimaging Initiative, along with a deeper
understanding of the disease's pathology and clinical course. This led
to the first revision of the clinical diagnostic criteria in AD in 27
years. In a recent, highly promising pilot trial, a nasal-spray form of
insulin delayed memory loss and preserved cognition in people with a
range of cognitive deficits. A larger-scale study to confirm and extend
these results is under development. NIA is making great strides, but
the resources are inadequate given the explosion of people with AD that
is predicted.
NIA's current budget does not reflect the tremendous responsibility
it has to meet the health research needs of a growing U.S. aging
population. While the current dollars appropriated to NIA seem to have
risen significantly since fiscal year 2003, when adjusted for
inflation, they have decreased almost 18 percent in the last 9 years.
According to the NIH Almanac, out of each dollar appropriated to NIH,
only 3.6 cents goes toward supporting the work of the NIA-compared to
16.5 cents to the National Cancer Institute, 14.6 cents to the National
Institute of Allergy and Infectious Diseases, 10 cents to the National
Heart, Lung and Blood Institute, and 6.3 cents to the National
Institute of Diabetes and Digestive and Kidney Diseases. With an
infusion of much needed support in fiscal year 2014, NIA can achieve
greater parity with its NIH counterparts and expand promising, recent
research activities, such as:
--implementing new prevention and treatment clinical trials, research
training initiatives, care interventions, and genetic research
studies developed as part of the National Alzheimer's Action
Plan;
--launching trans-NIH research initiatives developed by the NIH
Geroscience Interest Group to reduce the burden of age-related
disease;
--understanding the impact of economic concerns on older adults by
examining work and retirement behavior, health and functional
ability, and policies that influence individual wellbeing;
--supporting family caregivers by enhancing physician-family
communication during end-of-life and critical care; and,
--increasing healthy lifespan in humans by testing and applying
evidence derived from animal models.
NIA is poised to accelerate the scientific discoveries that we as a
nation are counting on. With millions of Americans facing the loss of
their functional abilities, their independence, and their lives to
chronic diseases of aging, there is a pressing need for robust and
sustained investment in the work of the NIA. In every community in
America, healthcare providers depend upon NIA-funded discoveries to
help their patients and caregivers lead healthier and more independent
lives. In these same communities, parents are hoping NIA-funded
discoveries will ensure that their children have a brighter future,
free from the diseases and conditions of aging that plague our Nation
today. Chronic diseases associated with aging afflict 80 percent of the
age 65+ population and account for more than 75 percent of Medicare and
other Federal health expenditures. Unprecedented increases in age-
related diseases as the population ages are one reason the
Congressional Budget Office projects that total spending on healthcare
will rise to 25 percent of the U.S. GDP by 2025--it is 17 percent of
GDP today.
Recent significant findings from NIA's Division of Biology Aging
that could help advance understanding of a range of chronic diseases,
include the discovery of the drug rapamycin, which has been shown to
extend median lifespan in a mouse model. Grantees supported by this
program have also identified genetic pathways that regulate the
maintenance of the stem cell microenvironment in aging tissues.
A signature project of the Behavioral and Social Science Research
Division is the Health and Retirement Study (HRS), the Nation's leading
source of combined data on health and financial circumstances of
Americans over age 50. HRS data provide evidence about the effects of
early-life exposures on later-life health, factors associated with
cognitive and functional decline, and trends in retirement, savings,
and other economic behaviors. The study is being replicated in 30 other
countries. Last year, genetic data from approximately 13,000
individuals were posted to NIH's online database, including
approximately 2.5 million genetic markers from each person. These data
are available for analysis by qualified researchers and will enhance
the ability to track the onset and progression of diseases and
conditions affecting the elderly.
Research that can be translated quickly into effective prevention
and efficient health care will reduce the burden of a ``Silver
Tsunami'' of age-associated chronic diseases. Breakthroughs from NIA
research can lead to treatments and public health interventions that
could delay the onset of costly conditions such as arthritis, heart
disease, stroke, diabetes, bone fractures, age-related blindness,
Alzheimer's, ALS, and Parkinson's diseases. Such advances could save
trillions of dollars by the middle of the current century.
We do not yet have the knowledge needed to predict, preempt, and
prevent the broad spectrum of diseases and conditions associated with
aging. We do not yet have sufficient knowledge about disease processes
to fully understand how best to prevent, diagnose, and treat diseases
and conditions of aging, nor do we have the knowledge needed about the
complex relationships among biology, genetics, and behavioral and
social factors related to aging. We do not yet have a sufficient pool
of new investigators entering the field of aging research. Bold,
visionary, and sustainable investments in the NIA will make it possible
to achieve substantial and measurable gains in these areas sooner
rather than later, and perhaps too late.
We recognize the tremendous fiscal challenges facing our Nation and
that there are many worthy, pressing priorities to support. However, we
believe a commitment to the Nation's aging population by making bold,
wise investments in programs will benefit them and future generations.
Investing in NIA is one of the smartest investments Congress can make.
REFERENCE
Alzheimer disease in the U.S. (2010-2050) estimated using the 1990
Census, Liesi E. Hebert, Jennifer Weuve, Paul A. Scherr, et al.,
Neurology; Published online before print February 6, 2013;
WNL.0b013e31828726f5.
FRIENDS OF THE NATIONAL INSTITUTE ON AGING
Alliance for Aging Research
Alzheimer's Association
Alzheimer's Foundation of America
American Academy of Dermatology
American Association for Geriatric Psychiatry
American Chronic Pain Association
American Federation for Aging Research
American Geriatrics Society
American Heart Association
American Pain Foundation
American Psychological Association
American Public Health Association
American Society for Bone and Mineral Research
American Society for Nutritional Sciences
American Society of Consultant Pharmacists
American Society of Hematology
American Society on Aging
Arthritis Foundation
Association of Jewish Aging Services
Association for Psychological Science
Association of Population Centers
B'nai B'rith International
BrightFocus Foundation
Brown Medical School
Consortium of Social Science Associations
Council on Social Work Education
Hospice Foundation of America
IEEE-USA
Institute for the Advancement of Social Work Research
National Association of Social Workers
National Council on the Aging
National Hispanic Council on Aging
International Cancer Advocacy Network (ICAN)
International Foundation for Anti-Cancer Drug Discovery
International Longevity Center--USA
Merck Institute of Aging and Health
National Alliance for Caregiving
National Association of Social Workers
National Council on the Aging
National Hispanic Council on Aging
National Hospice and Palliative Care Organization
National Vision Rehabilitation Association
Oral Health America
Parkinson's Action Network
Population Association of America
Society for Neuroscience
Society for Women's Health Research
Special Care Dentistry
The Ellison Medical Foundation
The Endocrine Society
The George Washington University Medical Center
The Gerontological Society of America
The North American Menopause Society
The Paget Foundation
The Simon Foundation for Continence
University of Pennsylvania Institute on Aging
University of Virginia
USAgainstAlzheimer's
______
Prepared Statement of the Friends of the National Institute on Drug
Abuse
Mr. Chairman and members of the subcommittee, thank you for the
opportunity to submit testimony to the subcommittee in support of the
National Institute on Drug Abuse. The Friends of the National Institute
on Drug Abuse is a coalition of over 150 scientific and professional
societies, patient groups, and other organizations committed to,
preventing and treating substance use disorders as well as
understanding their causes through the research agenda of the National
Institute on Drug Abuse (NIDA). We are pleased to provide testimony in
support of the work carried out by scholars around the country whose
work is supported by NIDA.
Recognizing that so many health research issues are inter-related,
Friends of the National Institute on Drug Abuse (NIDA) requests that
the subcommittee provide at least $32 billion for the National
Institutes of Health (NIH). Because of the critical importance of drug
abuse research for the health and economy of our Nation, we also
request that you provide a proportionate increase for the National
Institute on Drug Abuse in your Fiscal 2014 Labor, Health and Human
Services, Education and Related Agencies Appropriations bill.
Drug abuse is costly to Americans; it ruins lives, while tearing at
the fabric of our society and taking a huge financial toll on our
resources. Beyond the unacceptably high rates of morbidity and
mortality, drug abuse is often implicated in family disintegration,
loss of employment, failure in school, domestic violence, child abuse,
and other crimes. Placing dollar figures on the problem; smoking,
alcohol and illegal drug use results in an exorbitant economic cost on
our Nation, estimated at over $600 billion annually. We know that many
of these problems can be prevented entirely, and that the longer we can
delay initiation of any use, the more successfully we mitigate future
morbidity, mortality and economic burdens.
Over the past three decades, NIDA-supported research has
revolutionized our understanding of addiction as a chronic, often-
relapsing brain disease--this new knowledge has helped to correctly
situate drug addiction as a serious public health issue that demands
strategic solutions. By supporting research that reveals how drugs
affect the brain and behavior and how multiple factors influence drug
abuse and its consequences, scholars supported by NIDA continue to
advance effective strategies to prevent people from ever using drugs
and to treat them when they cannot stop.
NIDA supports a comprehensive research portfolio that spans the
continuum of basic neuroscience, behavior and genetics research through
medications development and applied health services research and
epidemiology. While supporting research on the positive effects of
evidence-based prevention and treatment approaches, NIDA also
recognizes the need to keep pace with emerging problems. We have seen
encouraging trends--significant declines in a wide array of youth drug
use--over the past several years that we think are due, at least in
part, to NIDA's public education and awareness efforts. However, areas
of significant concern, such as prescription drug abuse, remain and we
support NIDA in its efforts to find successful approaches to these
difficult problems.
The Nation's previous investment in scientific research to further
understand the effects of abused drugs on the body has increased our
ability to prevent and treat addiction. As with other diseases, much
more needs be done to improve prevention and treatment of these
dangerous and costly diseases. Our knowledge of how drugs work in the
brain, their health consequences, how to treat people already addicted,
and what constitutes effective prevention strategies has increased
dramatically due to support of this research. However, since the number
of individuals continuing to be affected is still rising, we need to
continue the work until this disease is both prevented and eliminated
from society.
We understand that the fiscal year 2014 budget cycle will involve
setting priorities and accepting compromise, however, in the current
climate we believe a focus on substance abuse and addiction, which
according to the World Health Organization account for nearly 20
percent of disabilities among 15-44 year olds, deserves to be
prioritized accordingly. We look forward to working with you to make
this a reality. Thank you for your support for the National Institute
on Drug Abuse.
______
Prepared Statement of the FSH Society, Inc.
Honorable Chairwoman Mikulski and Ranking Member Harkin, thank you
for the opportunity to submit this testimony. I am Daniel Paul Perez,
of Bedford, Massachusetts, President and CEO of the FSH Society, Inc.
and an individual who has lived with facioscapulohumeral muscular
dystrophy (FSHD) for 51 years. For hundreds of thousands of men, women,
and children worldwide the major consequence of inheriting this form of
muscular dystrophy is a lifelong progressive loss of all skeletal
muscles. FSHD is a crippling and life shortening disease. No one is
immune. It is both genetically and spontaneously transmitted to
children. It can affect multiple generations and entire family
constellations.
The National Institutes of Health (NIH) is the principal source of
funding of research on Facioscapulohumeral Muscular Dystrophy (FSHD)
currently at the $6 million level. Over many years, this Committee has
supported the incremental growth in funding for FSHD research. I am
pleased to report that this modest investment has produced huge
scientific returns.
1. CONGRESS HAS MADE A MAJOR DIFFERENCE IN MUSCULAR DYSTROPHY
I have testified many times before Congress. When I first
testified, we did not know the mechanism of this disease. Now we do.
When I first testified, we assumed that FSHD was a rare form of
muscular dystrophy. Now we understand it to be one of the most
prevalent forms of muscular dystrophy. Congress is responsible for this
success, through its sustaining support of the National Institutes of
Health (NIH), and the enactment of the Muscular Dystrophy CARE Act. I
am testifying in order to document this success and call on Congress to
continue the momentum of discovery you have set in motion.
Congress enacted The Muscular Dystrophy Community Assistance,
Research and Education Amendments of 2001 (the MD-CARE Act, Public Law
107-84) on December 18, 2001. It was reauthorized in 2008 and new
efforts are underway to reauthorize the MD-CARE Act as it will expire
in 2013. We are hopeful that this reauthorization bill will receive the
same overwhelming bi-partisan support enjoyed in earlier enactments.
2. QUANTUM LEAPS IN OUR UNDERSTANDING OF FSHD HAVE OCCURRED IN PAST 3
YEARS
The past 3 years have seen remarkable contributions made by
researchers funded by NIH.
--On August 19, 2010, American and Dutch researchers published a
paper which dramatically expanded our understanding of the
mechanism of FSHD.\1\ A front page story in the New York Times
quoted the NIH Director Dr. Francis Collins saying, ``If we
were thinking of a collection of the genome's greatest hits,
this would go on the list.'' \2\
--Two months later, another paper was published that made a second
critical advance in determining the cause of FSHD.\3\ The
research shows that FSHD is caused by the inefficient
suppression of a gene that may be normally expressed only in
early development.
--On January 17, 2012, an international team of researchers based out
of Seattle discovered a gene called DUX4 required to develop
chromosome 4-linked FSHD.\4\
--Six months later, another high profile paper produced by the NIH
funded University of Massachusetts Senator Paul D. Wellstone
Cooperative Research Center for FSHD, used sufficiently
``powered'' large collections of genetically matched FSHD cell
lines generated by the NIH center that are both unique in scope
and shared with all researchers worldwide, to improve on the
Seattle group's finding by postulating that DUX4-fl expression
is necessary but not sufficient by itself for FSHD muscle
pathology.\5\ This work was also supported by a NIH cooperative
research center grant mandated by MD CARE Act.
--On July 13, 2012, a team of international researchers from the,
United States, Netherlands and France identified mutations in a
gene causing 80 percent of another form of FSHD. This paper
furthers our understanding of the molecular pathophysiology of
FSHD. This work too was supported in part by a program project
grant from NIH.\6\
--On April 4, 2013, an international team published a mouse model
that appears more promising than previous models of FSHD. The
result of a decade's worth of work, during which scientific
understanding of FSHD exploded. ``We hope that in the near
future these mouse models will serve an important purpose in
drug development programs for FSHD,'' remarked senior author
Silvere van der Maarel of Leiden University in the Netherlands.
The herculean project was initiated in 2003, by the FSH
Society's Marjorie Bronfman Fellowship grant. The patient-
driven charity was seeking a definitive mouse model based on a
genetic unit called D4Z4. Normally, people have ten or more of
these units, repeated one after the other near the tip of
chromosome 4. The majority of FSHD patients, in contrast, have
fewer than ten D4Z4 units. The newly published mouse model
contains 2.5 copies of the D4Z4 unit, a truncated number
comparable to that seen in human FSHD patients. The D4Z4 unit
contains the gene called DUX4, which is toxic to muscle
cells.\7\ This work was also supported by NIH grants.
I am proud to say that many of these researchers have started their
efforts in FSHD with seed funding from the FSH Society and have
received continued support from the FSH Society, the National
Institutes of Health, and the Muscular Dystrophy Association and other
partners. This shows the power of the collaboration among funders,
patient groups and researchers to advance the search for cures and
treatments.
3. REMARKABLE PROGRESS IN FSHD RESEARCH AND THE NEED TO KEEP MOVING
FORWARD
Given the recent developments, there is a need to ramp up the
preclinical enterprise and build/organize infrastructure needed to
conduct clinical trials. Our immediate priorities should be to confirm
the new hypotheses and targets. We need to be prepared for this new era
in the science of FSHD, by accelerating efforts in the following five
areas: \8\
1. Genetics/epigenetics.--There is general acceptance that
transcriptional deregulation of D4Z4 is central to FSHD1 and FSHD2. The
FSHD2 gene SMCHD1 explains approximately 80 percent of FSHD2. There is
a need for better understanding of the factors that modulate DUX4
activity and disease penetrance.
2. FSHD molecular networks.--D4Z4 chromatin relaxation on FSHD-
permissive chromosome-4 haplotypes leads to activation of downstream
molecular networks. In addition to considering DUX4 as the ``target''
and downstream targets, the upstream processes and targets--triggering
of activation--are equally important. Hence, understanding what DUX4lf
does as a target and targets up- and down-stream of it are priorities.
Detailed studies on these processes are crucial for insight in the
molecular mechanisms of FSHD pathogenesis and may contribute to
explaining the large intra- and interfamily clinical variability.
Importantly such work may lead to intervention (possibly also
prevention) targets. Additional FSHD genes and modifiers are still
likely to exist. Apart from chromatin modifiers, these include, but are
not limited to, CAPN3 and the FAT1 gene that was recently suggested to
be involved in FSHD.
3. Clinical trial readiness.--It is now broadly accepted that
deregulation of the expression of D4Z4/DUX4 is at the heart of FSHD1
and FSHD2. This finding opens perspectives for intervention along
different avenues. Intervention trials are envisaged within the next
several years. The FSHD field needs to be prepared for this crucial
step. There is an increasing need to improve the translational process.
This includes, but is not limited to, the need for consensus on data
capture and storage, overcoming national and international barriers,
definition of natural history, identification of (meaningful) and
sensitive outcome measures, biomarkers, and meaningful functional
measures. There is a need to work more closely with FDA to help define
acceptable measures for trials.
4. Model systems.--There was already a good set of cellular and
models, based on different pathogenic (candidate gene) hypotheses. This
was further expanded during the last year. The phenotypes are very
diverse and often difficult to compare with the human FSHD phenotype.
Many basic questions remain unanswered and dearly need to be answered
for further translational studies: when and where is DUX4 expressed in
skeletal muscle and what regulates DUX4 activity. It was recognized
that there still exists a gap in our knowledge linking the basic
genetic and molecular findings with the observed muscle pathology. The
University of Massachusetts NIH Sen. Wellstone center and the
University of Rochester continue to generate human cellular resources.
These resources continuously deserve attention and need to be
replenished. Recent progress in ES-cell technology, including iPS
lines, allows for inter-group distribution and dedicated molecular
(epi)genetic studies.
5. Sharing.--Timely sharing of information and resources remains a
critical contributor to the progress in the field. Sharing of resources
other information remains a priority (e.g. protocols, guide to FSHD
muscle pathology, etc.).
We would be pleased to provide the Committee with detailed
information on each of these areas. The pace of discovery and numbers
of experts in the field of biological science and clinical medicine
working on FSHD are rapidly expanding. Many leading experts are now
turning to work on FSHD not only because it is one of the most
complicated and challenging problems seen in science, but because it
represents the potential for great discoveries, insights into stem
cells and transcriptional processes and new ways of treating human
disease.
4. NIH FUNDING FOR MUSCULAR DYSTROPHY
Mr. Chairman, these major advances in scientific understanding and
epidemiological surveillance are not free. They come at a cost. Since
Congress passed the MD CARE Act, research funding at NIH for muscular
dystrophy has increased 4-fold. While FSHD research funding has
increased 12-fold during this period, the level of funding is still
exceedingly modest.
FSHD RESEARCH DOLLARS & FSHD AS A PERCENTAGE OF TOTAL NIH MUSCULAR DYSTROPHY FUNDING
--------------------------------------------------------------------------------------------------------------------------------------------------------
Fiscal Year--
----------------------------------------------------------------------------------------------
2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012e
--------------------------------------------------------------------------------------------------------------------------------------------------------
All MD ($ millions)...................................... 12.6 21 27.6 39.1 38.7 39.5 39.9 47.2 56 83 86 75 75
FSHD ($ millions)........................................ 0.4 0.5 1.3 1.5 2.2 2.0 1.7 3 3 5 6 6 6
FSHD (percent total MD).................................. 3 2 5 4 6 5 4 5 5 6 7 8 8
--------------------------------------------------------------------------------------------------------------------------------------------------------
Sources: NIH/OD Budget Office & NIH OCPL & NIH RCDC RePORT
(e = estimate; as fiscal year 2012 actuals not available on-line as of March 12, 2013)
Despite the great success of the past two and a half years in the
science of FSHD brought about by Congress we are concerned that the
budget cuts required by the sequester are coming at a time when many of
the FSHD research projects are ending. It is likely that new research
projects will not be funded or existing programs will not be renewed.
This is a perfect storm that could have devastating effects on FSHD
research efforts. I served on the Federal advisory committee MDCC for 9
years until 2011. We have conveyed to the Executive Secretary of the
MDCC our grave concern that the current portfolio of research on FSHD
has a disproportionate number of FSHD grants near the end or in the
last year of their grant cycles. While most are competitively renewable
this occurrence could not have happened at a worst time with
sequestration making meat axe cuts across all Federal agencies.
We request for fiscal year 2014, a doubling of the
facioscapulohumeral muscular dystrophy (FSHD) research budget to $12
million dollars. This will allow an expansion of the U.S. DHHS NIH
Senator Paul D. Wellstone Muscular Dystrophy Cooperative Research
Centers, an increase in research awards, expansion of post-doctoral and
clinical training fellowships, and a dedicated center to design and
conduct clinical trials on FSHD.
We are aware of the great pressures on the Federal budget, but
cutting the NIH budget and research funding for FSHD at this time would
be the wrong decision. We have come so far with such modest funding.
This is not the time to lessen our endeavor. This is the time to fully
and expeditiously exploit the advances for which the American taxpayer
has paid.
Thank you for this opportunity to testify before your committee.
---------------------------------------------------------------------------
\1\ Lemmers, RJ, et al, A Unifying Genetic Model for
Facioscapulohumeral Muscular Dystrophy Science 24 September 2010: Vol.
329 no. 5999 pp. 1650-1653.
\2\ Kolata, G., Reanimated `Junk' DNA Is Found to Cause Disease.
New York Times, Science. Published online: August 19, 2010 http://
www.nytimes.com/2010/08/20/science/20gene.html.
\3\ Snider, L., Geng, L.N., Lemmers, R.J., Kyba, M., Ware, C.B.,
Nelson, A.M., Tawil, R., Filippova, G.N., van der Maarel, S.M.,
Tapscott, S.J., and Miller, D.G. (2010). Facioscapulohumeral dystrophy:
incomplete suppression of a retrotransposed gene. PLoS Genet. 6,
e1001181.
\4\ Geng et al., DUX4 Activates Germline Genes, Retroelements, and
Immune Mediators: Implications for Facioscapulohumeral Dystrophy,
Developmental Cell (2012), doi:10.1016/j.devcel.2011.11.013.
\5\ Jones TI, et al, Facioscapulohumeral muscular dystrophy family
studies of DUX4 expression: evidence for disease modifiers and a
quantitative model of pathogenesis. Hum Mol Genet. 2012 Oct
15;21(20):4419-30. Epub 2012 Jul 13.
\6\ Lemmers, RJ, et al, Digenic inheritance of an SMCHD1 mutation
and an FSHD-permissive D4Z4 allele causes facioscapulohumeral muscular
dystrophy type 2. Nat Genet. 2012 Dec;44(12):1370-4. doi: 10.1038/
ng.2454. Epub 2012 Nov 11.
\7\ Krom YD, Thijssen PE, Young JM, den Hamer B, Balog J, et al.
(2013) Intrinsic Epigenetic Regulation of the D4Z4 Macrosatellite
Repeat in a Transgenic Mouse Model for FSHD. PLoS Genet 9(4): e1003415.
doi:10.1371/journal.pgen.1003415.
\8\ 2012 FSH Society FSHD International Research Consortium, held
November 6, 2012 co-sponsored by DHHS NIH NICHD Boston Biomedical
Research Institute Senator Paul D. Wellstone MD CRC for FSHD. To read
the expanded summary and recommendations of the group see: http://
www.fshsociety.org/pages/sciConsortium.html.
---------------------------------------------------------------------------
______
Prepared Statement of the Girl Scouts of the USA
As the preeminent leadership development organization for girls,
Girl Scouts of the USA (Girl Scouts) serves over two million girls each
year, ages 5 to 17, from every corner of the United States and its
territories, with value placed on diversity and inclusiveness. We also
serve nearly 17,000 American girls living outside of the United States
in over 90 countries. Through our 112 councils, USA Girl Scouts
Overseas, and more than 800,000 dedicated volunteers, we continue to
deliver the Girl Scout Leadership Experience (GSLE)--the world's best
and most comprehensive program for girls' leadership development.
BUILDING GIRLS' LEADERSHIP
Girl Scout experiences through GSLE are, as much as possible, girl-
led and encourage hands-on and cooperative learning. The GSLE framework
specifies 15 outcomes--behaviors, attitudes, skills, and values--that
develop girls of courage, confidence, and character. We provide
significant financial assistance to girls who cannot afford to join the
Girl Scouts. In many communities, Girl Scouts is the single most
visible and viable positive choice for these girls.
Research shows that girl-only settings not only provide a sense of
belonging, but are also more effective environments for personal
development, learning new skills, and building self-confidence. In
emotionally and physically safe environments like those provided by
Girl Scouts, girls partner with positive role models in a range of
activities not limited by gender stereotypes. Girl Scout programs also
emphasize partnerships, public education campaigns, mentorship
programs, career exploration, traditional badges, and innovative
programming. By combining our girl-only learning environment, our
unique national program, our unparalleled delivery infrastructure, and
our proven expertise working with partners, we offer powerful learning
experiences for girls across all sectors, including girls in
traditionally underserved and underrepresented communities. And in so
doing, we are preparing a generation of girls to take leadership roles
in business, society, and our collective future.
Women today are well educated but still underrepresented in high-
paying and leadership positions. They face many societal barriers to
leading and achieving success in fields ranging from technology and
science to business and industry. With this in mind, we need a bold
policy shift so that girls are able to start building the skills they
need so that they are better positioned to achieve their full
leadership potential as women. Girl Scouts is eager to work with
policymakers to create opportunities and environments that foster
girls' leadership development.
PENSION RELIEF
Under Department of Labor, General Provisions, Girl Scouts
respectfully requests the insertion of the following language as our
highest priority request:
Sec. __. ELECTION NOT TO BE TREATED AS AN ELIGIBLE CHARITY
PLAN. A plan sponsor of an eligible charity plan (as defined in
subsection (d) of section 104 of the Pension Protection Act of
2006) may elect, effective for the first plan year beginning
after December 31, 2013, to have section 104 of such Act not
apply to such plan. In the case of such an election, solely for
plan years beginning after December 31, 2013, section 430(c) of
the Internal Revenue Code of 1986 and section 303(c) of the
Employee Retirement Income Security Act of 1974 shall apply as
if such sections had applied to the first two plan years
beginning after December 31, 2009, and as if the plan sponsor
had elected to apply section 430(c)(2)(D)(iii) of such Code and
section 303(c)(2)(D)(iii) of such Act with respect to those two
plan years.
The proposed language, which would only affect eligible charities
and thus should not have an associated cost, would modify the rule
established by section 202(b) of the Preservation of Access to Care for
Medicare Beneficiaries and Pension Relief Act of 2010, Public Law 111-
192. The effect of the proposed language is similar in effect to
section 2 of H.R. 4915, as passed by the Senate in December of 2010,
which also allowed a plan sponsor of an eligible charity plan not to
have section 104 of the Pension Protection Act of 2006 apply.
Girl Scouts of the USA, on behalf of the millions of girls we
serve, respectfully requests this technical fix. The language simply
says that, as of 2014, we, and all similarly structured charities, be
permitted to elect in to the Pension Protection Act funding rules,
which are the Federal pension rules applicable to corporate America.
In addition to our request pertaining to pension relief, the
following are the key policy priority areas where we can offer research
and programmatic success stories:
STEM EDUCATION
As the preeminent organization for girls and a leader on informal
STEM education, Girl Scouts is committed to ensuring that every girl
has the opportunity to explore and build an interest in science,
technology, engineering, and mathematics. The strength of our Nation
depends on increasing girls' involvement in STEM so that they can
develop critical thinking, problem solving, and collaboration skills
that will serve be important throughout their lives.
In 2012, the Girl Scout Research Institute (GSRI) released
Generation STEM: What Girls Say about Science, Technology, Engineering,
and Math, which found that girls are interested in STEM subjects and
aspire to STEM careers, but need further exposure and education about
what STEM careers can offer and how STEM can help girls make a
difference in the world.
Among some of Generation STEM's other findings:
--74 percent of teen girls are interested in STEM fields and STEM
subjects. Girls like the process of learning, asking questions,
and problem solving.
--Girls who are interested in STEM are significantly better students
and have higher confidence in their abilities and higher
academic goals.
--But while 81 percent say they are interested in pursuing a STEM
career, only 13 percent say it's their first choice. About half
of all girls feel that STEM isn't a typical career path for
girls. Fifty-seven percent of girls say that if they went into
a STEM career, they'd have to work harder than a man just to be
taken seriously.
--African American and Hispanic girls have high interest in STEM,
high confidence, and a strong work ethic, but they also say
they have fewer supports and less STEM exposure than Caucasian
girls.
As Congress considers consolidations and a redesign of existing
Federal STEM programs, we urge you to focus more on engaging and
motivating girls in STEM, in particular younger girls and girls in
underrepresented communities. Strategies include introducing girls to
diverse role models and mentors; promoting proven techniques for
engaging girls in STEM, such as single-gender learning; and hands-on
and experiential learning opportunities in after-school or out-of-
school environments.
FINANCIAL LITERACY
The world's current economic challenges have made financial
literacy matter now more than ever. Girl Scouts offers a financial
literacy program at every grade level, K-12. Through our Girl Scout
financial education programming, girls learn to handle money and the
basics of budgeting, banking, saving, using credit, planning for
retirement, and even practicing philanthropy.
Additionally, the Girl Scout Cookie Program is often girls' first
foray into business planning and entrepreneurship. The $790-million
program is the largest girl-led business in the world.
While lack of financial literacy is a growing concern, relatively
little research has been conducted on how girls think about and
experience money and finances. To address this gap, the Girl Scout
Research Institute recently conducted a study, Having It All: Girls and
Financial Literacy, with girls and their parents. It found that girls
need and want financial literacy skills to help them achieve their
dreams, with 90 percent saying it is important for them to learn how to
manage money. However, just 12 percent of girls surveyed feel ``very
confident'' about making financial decisions.
To be successful and sustainable, financial education must begin
early, be relevant, and continue throughout elementary and secondary
education. And although 93 percent of the public believes all high
school students should be required to take a class in financial
education, only four States have made a semester-long course in
financial literacy a graduation requirement.\1\ In addition to
providing teachers with training and materials, we believe policy
makers should increase support for critical after-school and community-
based programs so that girls have the opportunity to learn money-
management skills and have real-world financial literacy experiences
that will serve them throughout their lives.
HEALTHY LIVING--BULLYING AND RELATIONAL AGGRESSION
As exemplified through our program experience and research, Girl
Scouts understands the complex issue of healthy living and what
motivates youth--especially girls--to adopt healthy lifestyles.
Improving youths' physical health and emotional well-being are not
mutually exclusive. Youth, especially girls, experience them in an
interrelated fashion. Girls place the same or even greater emphasis on
social and emotional health as physical health.
The Girl Scout Research Institute's original research report,
Feeling Safe: What Girls Say, found that nearly half (46 percent) of
girls define safety as not having their feelings hurt, and
approximately one-third of all girls worry about being teased, bullied,
threatened, or having their feelings hurt when spending time with
peers, participating in groups, and trying new things. Another GSRI
report, The New Normal? What Girls Say About Healthy Living, tells us
that a girl's relationships with her peers are critical components of
her health and safety.
Our BFF (Be a Friend First) curriculum is focused on middle-school
girls and designed to easily integrate into existing health or
character education classes. It can even serve as an after-school
program in the community.
The Department of Education has proposed a safe schools initiative
that includes a positive school climate focus, and Girl Scouts supports
this kind of effort, which embraces a holistic definition of health
that addresses both the physical health and emotional wellness of
youth. National youth-serving organizations such as Girl Scouts should
be seen as vital partners for schools in developing relevant solutions,
such as policies and programs that address relational aggression and
building healthy relationships.
CLOSING
We look forward to being a partner with Congress as you make
difficult funding decisions in the areas of supporting healthy living,
improving the financial education of our youth, and building a pipeline
of girls and underrepresented minorities in STEM careers. Thank you,
and please consider us a resource in these areas.
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\1\ Back to School Survey Shows Americans Want Personal Finance
Taught in the Classroom, Visa, July 20, 2010.
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Prepared Statement of the Global Health Technologies Coalition
Chairman Harkin, Ranking Member Moran, and Members of the
Committee, thank you for the opportunity to provide testimony on the
fiscal year 2014 appropriations funding for the National Institutes of
Health (NIH) and the Centers for Disease Control and Prevention (CDC).
We appreciate your leadership in promoting the importance of
international development, in particular global health. We hope that
your support will continue. I am submitting this testimony on behalf of
the Global Health Technologies Coalition (GHTC), a group of over 25
nonprofit organizations working together to promote the advancement of
research and development (R&D) of new global health innovations--
including new vaccines, drugs, diagnostics, microbicides, and other
tools--to combat global health diseases. The GHTC's members strongly
believe that to meet the global health needs of tomorrow, it is
critical to invest in research today so that the most effective health
solutions are available when we need them. My testimony reflects the
needs expressed by our member organizations which work with a wide
variety of partners to develop new and more effective life-saving
technologies for the world's most pressing health issues. We strongly
urge the Committee to continue its established support for global
health R&D by (1) sustaining and supporting the U.S. investment in
global health research and product development by providing $32 billion
for NIH, and providing robust funding for CDC, with $362.9 million for
the CDC Center for Global Health, (2) requiring leaders at the National
Institutes for Health, the Centers for Disease Control and Prevention,
the Food and Drug Administration and the Secretariat of the U.S.
Department of Health and Human Services to join leaders of other U.S.
agencies to develop a five-year cross-Government strategy for global
health research and product development, and to ensure that global
health R&D is robust, efficient, coordinated, and streamlined, 3)
instructing the NIH and CDC, in collaboration with other agencies
involved in global health, to continue their commitment to global
health in their R&D programs, and to document coordination efforts
between agencies for the use of Congress and the public, and (3) to
request that the newly-formed National Center for Advancing
Translational Sciences (NCATS) expand its clinical trials mandate to
include all stages of research.
Critical need for new global health tools
Our Nation's investments have made historic strides in promoting
better health around the world: nearly six million people living with
HIV/AIDS now have access to life-saving medicines; new, cost-effective
tools help us diagnose diseases quicker and more efficiently than ever
before; and innovative new vaccines are making significant dents in
childhood mortality. While we must increase access to these and other
proven, existing health tools to tackle global health problems, it is
just as critical that we continue to invest in developing the next
generation of tools to stamp out disease and address current and
emerging threats. For instance, newer, more robust, and easier to use
antiretroviral drugs (ARV), particularly for infants and young
children, are needed to treat and prevent HIV, and even an AIDS vaccine
that is 50 percent effective has the potential to prevent one million
HIV infections every year. Drug-resistant tuberculosis (TB) is on the
rise globally, including in the United States, however the only vaccine
on the market is insufficient at 90 years old, and most therapies are
more than 50 years old, extremely toxic, and too expensive. New tools
are also urgently needed to address fatal neglected tropical diseases
(NTDs) such as sleeping sickness, for which diagnostic tools are
inadequate and the few drugs available are toxic or difficult to use.
There are many very promising technology candidates in the R&D pipeline
to address these and other health issues; however, these tools will
never be available if the support needed to continue R&D is not
supported and sustained.
Research and U.S. global health efforts
The United States is at the forefront of innovation in global
health technologies. For example, in November 2010, the NIH announced
the results of the iPrEx clinical trial, a large, multi-country
research study examining pre-exposure prophylaxis (PrEP). The study
found that a daily dose of two anti-retroviral drugs could provide an
average of 44 percent additional protection to high-risk populations
who also received a comprehensive package of HIV prevention services.
Additional studies supported by the CDC and the University of
Washington confirmed that a daily oral dose of ARV drugs used to treat
HIV infection can reduce the risk of HIV acquisition among uninfected
individuals by between 63 and 73 percent.
The NIH is the largest funder of global health research in the U.S.
Government, and the agency continues to demonstrate growing interest in
global health issues, particularly in the area of translational
research. NIH Director Francis Collins has made global health one of
his top five priorities for the future of the NIH, and our coalition
members have been pleased to see this implemented via the launch of a
new Center for Global Health Studies at the Fogarty International
Center, new initiatives on global health at the National Cancer
Institute, ongoing exceptional work of the National Institute for
Allergy and Infectious Diseases (NIAID), and the creation of the new
National Center for Advancing Translational Sciences (NCATS).
Additionally, the Model Non-Profit License Agreement for NTDs, HIV, TB,
and Malaria Technologies was created for nonprofit institutions and
PDPs with a demonstrated commitment to neglected diseases to apply for
the use of patented inventions and non-patented biological materials
from the NIH and the FDA intramural laboratories. Finally, NCATS
recently began a pilot partnership between NCATS and private industry
aimed at finding new cures and treatments using a library of compounds
that already exist. Each of these efforts built on the historic work
carried out by the agency which contributes to improved health around
the world.
With operations in more than 54 countries, the CDC is engaged in
many global health research efforts. The work of CDC scientists has led
to major advances against devastating diseases. Although the CDC is
known for its expertise and participation in HIV, TB, and malaria
programs, it also operates several activities for neglected diseases in
its National Center for Zoonotic, Vector-Borne, and Enteric Diseases.
The CDC's Center for Global Health employs 1,100 staff members, and has
people on the ground in 55 countries.
Leveraging the private sector for innovation
The NIH, CDC, and other U.S. agencies involved in global health R&D
regularly collaborate with the private sector in developing,
manufacturing, and introducing important technologies such as those
described above through public-private partnerships, including product
development partnerships. These partnerships leverage public-sector
expertise in developing new tools, partnering with academia, large
pharmaceutical companies, the biotechnology industry, and governments
in developing countries to drive greater development of products for
neglected diseases in which private industries have not historically
invested. This unique model has generated sixteen new global health
products and has enormous potential for continued success if robustly
supported. NIH Director Francis Collins has stated that such
partnership is key to the development of therapies and health tools
based on NIH-funded research.
Innovation as a smart economic choice
Global health R&D brings life-saving tools to those who need them
most, however the benefits of these efforts bring are much broader than
preventing and treating disease. Global health R&D is also a smart
economic investment in the United States, where it drives job creation,
spurs business activity, and benefits academic institutions. Biomedical
research, including global health, is a $100 billion enterprise in the
United States. Sixty-four cents out of every U.S. dollar invested in
global health R&D goes directly to U.S.-based researchers. In a time of
global financial uncertainty, it is important that the United States
support industries, such as global health R&D, which build the economy
at home and abroad.
An investment made today can help save significant money in the
future. The recently released meningitis A vaccine MenAfriVac is on
course to save nearly $600 million in health care costs over the next
decade. In addition, new therapies to treat drug-resistant tuberculosis
have the potential to reduce the price of tuberculosis treatment by 90
percent and cut health system costs significantly. The United States
has made smart investments in research in the past that have resulted
in lifesaving breakthroughs for global health diseases, as well as
important advances in diseases endemic to the United States. We must
now build on those investments to turn those discoveries into new
vaccines, drugs, tests, and other tools.
Recommendations
In this time of fiscal constraint, support for global health
research that improves the lives of people around the world--while at
the same time creating jobs and spurring economic growth at home--
should unquestionably be one of the Nation's highest priorities. In
keeping with this value, the GHTC respectfully requests that the
Committee do the following:
--Sustain and support U.S. investment in global health research and
product development by fully funding NIH, CDC, and FDA to carry
out their work.
--Require leaders at the National Institutes for Health, the Centers
for Disease Control and Prevention, the Food and Drug
Administration and the Secretariat of the U.S. Department of
Health and Human Services to join leaders of other U.S.
agencies to develop a five-year cross-Government strategy for
global health research and product development, and to ensure
that global health R&D is robust, efficient, coordinated, and
streamlined.
--Instruct the NIH and CDC, in collaboration with other agencies
involved in global health, to continue their commitment to
global health within their R&D programs, and to request that
the newly-formed National Center for Advancing Translational
Sciences (NCATS) expand its clinical trials mandate to include
all stages of research.
--Instruct the FDA to continue to elevate global health in its
mandate by creating an office of neglected diseases, building
stronger partnerships with global regulatory stakeholders,
ensuring that it can review health products for all neglected
diseases, taking steps to increase transparency by reporting to
Congress on its neglected disease activities, and strengthening
its internal capacity on global health.
As a leader in science and technology, the United States has the
ability to capitalize upon our strengths to help reduce illness and
death and ultimately eliminate disabling and fatal diseases for people
worldwide, contributing to a healthier world and a more stable global
economy. Sustained investments in global health research to develop new
drugs, vaccines, tests, and other health tools--combined with better
access to existing methods to prevent and treat disease--present the
United States with an opportunity to dramatically alter the course of
global health while building political and economic security across the
globe.
On behalf of the members of the GHTC, I would like to extend my
gratitude to the Committee for the opportunity to submit written
testimony for the record.
______
Prepared Statement of the Guillain-Barre Syndrome (GBS)/Chronic
Inflammatory Demyelinating Polyneuropathy (CIDP) Foundation,
International
Fiscal Year 2014 Appropriations Recommendations:
--For the National Institutes of Health, provide $32 billion in
fiscal year 2014, with proportional increases to the National
Institute of Neurological Disorders and Stroke, the National
Center for Advancing Translational Sciences, the National
Institutes of Allergy and Infectious Disease and the Office of
Rare Disease Research.
--The Committee recommendation for the Centers for Disease Control
and Prevention to improve health outcomes for GBS and CIDP
patients by promoting enhanced awareness and recognition
activities in partnership with stakeholders.
--The Committee's commendation of National Institute of Neurological
Disorders and Stroke research portfolio focused on disorders of
the nervous system and encouragement to pursue expanded
research focused on inflammatory disorders impacting the
peripheral nervous system such as Guillain--Barre Syndrome,
Chronic Inflammatory Demyelinating Polyneuropathy, and related
conditions.
--The Committee's recommendation that the Office of Rare Diseases
Research initiate research activities in peripheral nervous
system disorders and express support for the National Center
for Advancing Translational Sciences to pursue a GBS indication
for current, off-label treatment options.
Chairman Harkin, Ranking Member Moran and members of the
subcommittee, thank you for providing me with the opportunity to submit
written testimony to the Labor, Health and Human Services, Education
and Related Agencies Appropriations Subcommittee on behalf of the
Guillain-Barre Syndrome (GBS)/Chronic Inflammatory Demyelinating
Polyneuropathy (CIDP) Foundation, International.
As a non-profit, 501(c)(3) organization, the GBS/CIDP Foundation,
International advocates for research into prevention, access to
affordable treatments and high quality patient care. Inspired by his
experience with GBS, Bob and Estelle Benson founded the GBS/CIDP
Foundation, International. Starting as a small support group for
patients with GBS in 1980, the first support group meeting consisted of
eight people in the Benson's dining room.
Over the past thirty years, the Foundation has expanded to over
30,000 members in 33 countries, offering support and assistance to
ensure that patients with GBS, CIDP and associated disease variants are
provided with proper diagnosis, treatment and support. In line with the
founding principles of the Bensons, the mission of the Foundation
remains to improve the quality of life for individuals and families
worldwide affected by GBS, CIDP and variants by:
--Providing a network for all patients, their caregivers and families
so that GBS or CIDP patients can depend on the Foundation for
support, and reliable up-to-date information.
--Providing public and professional educational programs worldwide
designed to heighten awareness and improve the understanding
and treatment of GBS, CIDP and variants.
--Expanding the Foundation's role in sponsoring research and engaging
in patient advocacy.
Guillain-Barre Syndrome and Chronic Inflammatory Demyelinating
Polyneuropathy:
GBS and CIDP are inflammatory, autoimmune disorders which affect
the Peripheral Nervous System and the myelin insulation surrounding the
sensory, motor or autonomic nerves. Patients with Guillain-Barre
Syndrome experience a sudden onset of muscle weakness or paralysis over
a few days, which presents through decreased reflexes in the arms and
legs, low blood pressure and in severe cases, trouble breathing or
swallowing. While the cause is unknown, nearly half of cases occur
after the patient experiences a viral or bacterial infection. Given the
sudden and unexpected onset of GBS, patients require swift and costly
treatments with hospitalization. Patients undergo plasma exchange (PE)
and physician administered intravenous immune globulins (IVIg), which
lessen the severity of the acute phase and accelerate patient recovery.
An estimated three thousand to six thousand Americans develop GBS each
year.
Chronic Inflammatory Demyelinating Polyneuropathy is the chronic
form of GBS and patients with this disease experience a gradual onset
which causes weakness and often a loss of reflexes. The associated
disease variants describe the development of the disease which include
``progressive,'' developing a several year development, ``recurrent,''
consisting of multiple active episodes or ``monophasic'', occurring in
a single episode. The management of the disease requires systematic
treatments with IVIg to ensure the best patient prognosis. Without
proper diagnosis and treatment, the disease can progress and leave
patients disabled. CIDP is extremely rare and occurs in one out of
every 1.5 to 3 million Americans.
For both GBS and CIDP, costly biologic treatments are necessary and
the only medical option for the management and treatment of these
chronic and life threatening conditions. Some private health insurance
companies which offer prescription drug coverage, have created a
``specialty'' or fourth tiered payment plan for high cost treatments
like IVIg. Unlike other out of pocket requirements for traditional drug
co-pays, which require patients to pay $10-$50, patients receiving
drugs on this ``specialty'' tier are required to pay co-insurance for
the treatment, sometimes up to 25-33 percent. For IVIg, this could over
$2,500 for a single treatment.
The high costs of these ``specialty'' tiers place a large financial
burden on GBS and CIDP patients and their families, restrict patient
access to medically necessary treatments and at times force patients to
go without vital, prescription drugs. The promise of federally
supported medical advancements at the National Institutes of Health,
into more effective treatments and lower cost treatments and hopefully
one day a cure, are important to the thousands of patients impacted by
these diseases each year.
Federal Investment at NIH and CDC:
The medical community has provided countless examples of the impact
biomedical research has had on devastating and once terminal illnesses.
Simple and small NIH grants from unknown, unestablished medical
researchers have led to groundbreaking discoveries providing effective
preventions and interventions, life-saving treatments and for some
diseases, a cure. We cannot guarantee nor expect that if left to the
private medical research and drug development sectors, these
revolutionary developments would be made. Some disease like GBS, CIDP
and the associated disease variants do not lend themselves to quick
profit or a patient base large enough to bring about private
investment. Some discoveries take the lifetime commitment of dedicated
researchers that are not aimed at profits, but at people. Not aimed at
fame, but of relieving human suffering.
It's not only the reason why the National Institutes of Health was
established, but also why the Federal investment in medical research is
so highly respected and supported by the American public. The American
people support the promise of what NIH discoveries can accomplish and
the impact it could have on a mother or father with Alzheimer 's
disease, wife or husband struck by GBS or child with cancer. And they
are proud to the lead the world in medical innovation and the
investment it brings about. But, as the funding our Nation provides for
medical research fails to keep pace with opportunity, this leadership
role could be slipping through our grasp.
Reversing sequestration and the corresponding NIH cuts is
imperative in our goal of maintaining the Nation's status as the leader
of groundbreaking biomedical health discoveries. The GBS/CIDP
Foundation supports a $32 billion request for fiscal year 2014 for the
National Institutes of Health, with proportional increases to the
National Institute of Neurological Disorders and Stroke (NINDS), the
National Center for Advancing Translational Sciences (NCATS), the
National Institutes of Allergy and Infectious Disease and the Office of
Rare Disease Research (ORDR). This increase will allow for the
possibility of an expanded research portfolio focused on inflammatory
disorders of the nervous system at NINDS, ORDR to initiate research
activities in peripheral nervous system disorders, and for NCATS to
pursue a GBS indication for current, off-label treatment options
through this Committee's support and encouragement.
Additionally, given the importance of accurate patient diagnosis
for nervous system disorders and the swift administration of the
correct treatments which supply the best patient prognosis, we
respectfully request the subcommittee recommendation for the Centers
for Disease Control and Prevention to promote enhanced awareness and
recognition activities of GBS and CIDP, in partnership with
stakeholders.
This subcommittee's past investment in biomedical research has
provided hope to the millions of patients with rare diseases which are
difficult to diagnose, treat and prevent. I respectfully urge your
continued support of important health related research and patient care
programs at NIH and CDC. Thank you again for providing me with the
opportunity to submit written testimony on behalf of the thousands of
GBS and CIDP patients and their families and the GBS/CIDP Foundation,
International.
______
Prepared Statement of the Harm Reduction Coalition
We thank you for the opportunity to submit testimony regarding
fiscal year 2014 Appropriations. Our testimony focuses on the urgency
of scaling up Federal overdose prevention efforts.
The Centers for Disease Control and Prevention (CDC) reports that
``Drug overdose death rates in the United States have more than tripled
since 1990 and have never been higher. In 2008, more than 36,000 people
died from drug overdoses, and most of these deaths were caused by
prescription drugs . . . there is currently a growing, deadly epidemic
of prescription painkiller abuse . . . the misuse and abuse of
prescription painkillers was responsible for more than 475,000
emergency department visits in 2009, a number that doubled in just 5
years.''
A recent report published by the CDC demonstrates that overdose
deaths continued to increase for the 11th consecutive year in 2010 and
approximately 100 American lives were lost every single day. Overdose
deaths continue to persist as a leading cause of preventable death in
the United States.
The Obama Administration's 2013 National Drug Control Strategy
prioritizes overdose prevention and intervention as a key component in
addressing this public health epidemic. In order to meet the
Administration's goal of reducing overdose deaths by 15 percent, the
Office of National Drug Control Policy has emphasized the role of
emergency opioid antagonist therapy in reducing mortality in their 2013
Strategy. ``Naloxone is an opioid antagonist that has long been used as
an emergency intervention to reverse the potentially fatal respiratory
depressant effects of an opioid overdose (opioids include licit drugs
such as morphine, codeine, oxycodone, methadone and hydrocodone as well
as Schedule 1 illicit drugs such as heroin). Naloxone can be given by
injection into a muscle or with a nasal spray in the nose. When
administered to an individual who has taken opioids, it is believed
naloxone dislodges the opioids from the opioid receptors in the brain.
This can reverse the effects of an overdose and help restore breathing
that may have stopped or slowed during the overdose episode. As death
typically does not occur until several hours after an opioid overdose,
there is a window of opportunity to intervene by calling 911, giving
rescue breathing, and by the administration of naloxone by a trained
lay person . . . Research has shown that naloxone is an important and
cost-effective tool to prevent overdose and ultimately reduce drug use
and its consequences.''
However, despite the powerful life-saving properties of naloxone
and overdose prevention education, it is underutilized. HHS, the
Department of Justice, and other agencies have been working to address
prescription drug misuse, abuse, and diversion, but there is no
coordinated Federal public health effort focused specifically on
preventing death from overdose and no Federal funding is currently
being allocated to these evidence-based practices.
To that end, as advocates dedicated to preventing deaths from
opioid overdose, we request that the subcommittee consider including
report language in the fiscal year 2014 Appropriations bill which urges
the Department of Health and Human Services and appropriate Federal
agencies to adopt the following priorities:
1. Prioritize overdose prevention and intervention to receive
current funding mechanisms and link to treatment and recovery services:
--Given the important role of the Substance Abuse Prevention and
Treatment Block Grant in providing funding to single State
agencies for prevention, treatment, and recovery services, the
Substance Abuse and Mental Health Services Administration
should take steps to encourage and support the use of Substance
Abuse Prevention and Treatment Block Grant funds for opioid
safety education, training, and programming, with a focus on
initiatives that distribute emergency opioid antagonist therapy
to those likely to witness--and those at risk of--an overdose.
2. Take steps to increase awareness of--and access to--the use of
opioid antagonist therapy:
--All Federal agencies involved in research, policies, regulation,
and programs related to opioid misuse should coordinate efforts
and develop and disseminate information about naloxone to
health care professionals, individuals, and families and
otherwise take other steps to facilitate its use, so that lives
can be saved.
--The Department of Health and Human Services should coordinate a
national public health campaign to increase awareness of the
signs and symptoms of overdose and improve understanding of the
steps that individuals can take to save the life of someone who
is experiencing an overdose. Such a national campaign should
include information regarding the use of naloxone, rescue
breathing, and calling emergency services, such as 9-1-1 and/or
poison control centers.
--CDC, working in collaboration with the Substance Abuse Mental
Health Services Administration (SAMHSA) and the Health
Resources and Services Administration (HRSA), should enable
best practices, by providing technical assistance and toolkits
for community programs and health professionals who wish to
distribute naloxone.
3. Increase Federal surveillance and data collection regarding
opioid use, misuse, and deaths to ensure that policies and programs are
designed to target the actual causes of opioid misuse and death and to
monitor the impact of recent State legislative actions that expand
access and utilization of naloxone.
4. Continue Federal investment in the basic, clinical, and
translational research supported by the National Institute of Drug
Abuse (NIDA).
The Harm Reduction Coalition believes that these measures are
critical to meeting the goal of reversing the overdose epidemic in the
United States.
We thank you for your consideration of the important issues.
______
Prepared Statement of the Health Professions and Nursing Education
Coalition
The members of the Health Professions and Nursing Education
Coalition (HPNEC) are pleased to submit this statement for the record
recommending $520 million in fiscal year 2014 for the health
professions education programs authorized under Titles VII and VIII of
the Public Health Service Act and administered through the Health
Resources and Services Administration (HRSA). HPNEC is an alliance of
national organizations (https://www.aamc.org/advocacy/hpnec/
members.htm) dedicated to ensuring the health care workforce is trained
to meet the needs of the country's growing, aging, and diverse
population.
Designed to provide education and training opportunities to
aspiring health care professionals, in 2013, the programs celebrate 50
years of helping the workforce adapt to Americans' changing health care
needs. With a focus on primary care, Titles VII and VII are the only
Federal programs designed to train providers in interdisciplinary,
community-based settings to meet the needs of the country's special and
underserved populations, increase minority representation in the health
care workforce, and fill the gaps in the supply of health professionals
not met by traditional market forces. Further, the programs are able to
advance timely priorities, such as strengthening education and training
opportunities in geriatrics to better care for the Nation's aging
population and closing the gap in access to mental and behavioral
health services.
While HPNEC recognizes the subcommittee faces difficult decisions
in a constrained budget environment, a continued commitment to programs
supporting health care workforce development should remain a high
priority. The Nation faces a shortage of health professionals, and
residents of underserved rural and urban areas alike already struggle
to access health providers. Further, the number of Americans over age
65 is expected to reach 70 million by 2030, and as the Nation's baby
boomers age, they will require more care. Coupled with the millions of
newly insured individuals entering the system, this increased demand
for health services only will exacerbate the existing deficit of health
professionals.
Diversifying the health care workforce is a central focus of the
Title VII and VIII programs, making them a key player in the fight to
mitigate racial, ethnic, and socio-economic health disparities, which
cost the Nation billions of dollars each year. In particular, the
Health Careers Opportunity Program (HCOP) trained 20 percent more
minority and disadvantaged students than expected, helping students
successfully complete their coursework and creating a more competitive
health professions applicant pool.
Further, 1 in 3 Title VII and Title VIII program completers enter
practice in a medically underserved community (MUC) or health
professions shortage area (HPSA), helping to increase access to
services in rural and urban underserved communities. Failure to fully
fund the Title VII and VIII programs would jeopardize efforts to
address these challenges and prepare the next generation of health
professionals.
The Title VII and Title VIII programs can be considered in seven
general categories:
--The Primary Care Medicine and Oral Health Training programs support
education and training of primary care professionals, to
improve access and quality of health care in underserved areas.
Two-thirds of Americans interact with a primary care provider
every year. Approximately one-half of primary care providers
trained through these programs work in underserved areas,
compared to 10 percent of those trained in other programs. The
General Pediatrics, General Internal Medicine, and Family
Medicine programs provide critical funding for primary care
physician training in community-based settings and support a
range of initiatives, including medical student and residency
training, faculty development, and the development of academic
administrative units. The primary care cluster also provides
grants for Physician Assistant programs to encourage and
prepare students for primary care practice in rural and urban
Health Professional Shortage Areas. The General Dentistry,
Pediatric Dentistry, and Public Health Dentistry programs
provide grants to dental schools and hospitals to create or
expand primary care and public health dental residency training
programs.
--Because much of the Nation's health care is delivered in remote
areas, the Interdisciplinary, Community-Based Linkages cluster
supports community-based training of health professionals.
These programs are designed to encourage health professionals
to return to such settings after completing their training and
to encourage collaboration between two or more disciplines. The
Area Health Education Centers (AHECs) offer clinical training
opportunities to health professions and nursing students in
rural and other underserved communities by extending the
resources of academic health centers to these areas. AHECs,
which leverage State and local matching funds, form networks of
health-related institutions to provide education services to
students, faculty and practitioners, including continuing
education on a variety of topics such as cultural competence,
health disparities, and issues affecting veterans. In the 2011-
2012 academic year, AHECs trained more than 28,000 medical
students in rural or underserved communities, half of which
were located in a medically underserved community (MUC) and/or
health professions shortage area (HPSA). Geriatric Health
Professions programs support geriatric faculty fellowships, the
Geriatric Academic Career Award, and Geriatric Education
Centers, all designed to bolster the number and quality of
health care providers caring for older generations, as well as
faculty with geriatrics expertise. The Graduate Psychology
Education program, which supports interdisciplinary training of
doctoral-level psychology students with other health
professionals, provides mental and behavioral health services
to underserved populations (i.e., older adults, children,
chronically ill, and victims of abuse and trauma, including
returning military personnel and their families), especially in
rural and urban communities. The Mental and Behavioral Health
Education and Training Grant Program supports the training of
psychologists, social workers, and child and adolescent
professionals. These programs together work to close the gap in
access to quality mental and behavioral health care services by
increasing the number of trained mental and behavioral health
providers.
--The Minority and Disadvantaged Health Professionals Training
cluster helps improve health care access in underserved areas
and the representation of minority and disadvantaged
individuals in the health professions. Diversifying the health
care workforce is a central focus of the programs, making them
a key player in the fight to mitigate racial, ethnic, and
socio-economic health disparities. Further, the programs
emphasize cultural competency for all health professionals, an
important role as the Nation's population is growing and
becoming increasingly diverse. Minority Centers of Excellence
support increased research on minority health issues,
establishment of an educational pipeline, and the provision of
clinical opportunities in community-based health facilities.
The Health Careers Opportunity Program seeks to improve the
development of a competitive applicant pool through
partnerships with local educational and community
organizations. The Faculty Loan Repayment and Faculty
Fellowship programs provide incentives for schools to recruit
underrepresented minority faculty. The Scholarships for
Disadvantaged Students make funds available to eligible
students from disadvantaged backgrounds who are enrolled as
full-time health professions students.
--The Health Professions Workforce Information and Analysis program
provides grants to institutions to collect and analyze data to
advise future decisionmaking on the health professions and
nursing programs. The Health Professions Research and Health
Professions Data programs have developed valuable, policy-
relevant studies on the distribution and training of health
professionals, including the Eighth National Sample Survey of
Registered Nurses, the Nation's most extensive and
comprehensive source of statistics on registered nurses.
Reflecting the need for better health workforce data to inform
both public and private decisionmaking, the National Center for
Workforce Analysis serves as a source of such analyses.
--The Public Health Workforce Development programs help increase the
number of individuals trained in public health, identify the
causes of health problems, and respond to such issues as
managed care, new disease strains, food supply, and
bioterrorism. The Public Health Traineeships and Public Health
Training Centers seek to alleviate the critical shortage of
public health professionals by providing up-to-date training
for current and future public health workers, particularly in
underserved areas. Preventive Medicine Residencies, which do
not receive funding through Medicare GME, provide training in
the only medical specialty that teaches both clinical and
population medicine to improve community health. This cluster
also includes a focus on loan repayment as an incentive for
health professionals to practice in disciplines and settings
experiencing shortages. The Pediatric Subspecialty Loan
Repayment Program offers loan repayment for pediatric medical
subspecialists, pediatric surgical specialists, and child and
adolescent mental and behavioral health specialists, in
exchange for service in underserved areas.
--The Nursing Workforce Development programs under Title VIII provide
training for entry-level and advanced degree nurses to improve
the access to, and quality of, health care in underserved
areas. These programs provide the largest source of Federal
funding for nursing education, providing loans, scholarships,
traineeships, and programmatic support that, between fiscal
year 2005 and 2010, supported over 400,000 nurses and nursing
students as well as numerous academic nursing institutions and
health care facilities. Each year, nursing schools turn away
tens of thousands of qualified applications at all degree
levels due to an insufficient number of faculty, clinical
sites, classroom space, clinical preceptors, and budget
constraints. At the same time, the need for nursing services
and licensed, registered nurses is expected to increase
significantly over the next 20 years. The Advanced Education
Nursing program awards grants to train a variety of nurses with
advanced education, including clinical nurse specialists, nurse
practitioners, certified nurse-midwives, nurse anesthetists,
public health nurses, nurse educators, and nurse
administrators. Workforce Diversity grants support
opportunities for nursing education for students from
disadvantaged backgrounds through scholarships, stipends, and
retention activities. Nurse Education, Practice, and Retention
grants help schools of nursing, academic health centers, nurse-
managed health centers, State and local governments, and other
health care facilities to develop programs that provide nursing
education, promote best practices, and enhance nurse retention.
The Loan Repayment and Scholarship Program repays up to 85
percent of nursing student loans and offers full-time and part-
time nursing students the opportunity to apply for scholarship
funds in exchange for 2 years of practice in a designated
nursing shortage area. The Comprehensive Geriatric Education
grants are used to train RNs who will provide direct care to
older Americans, develop and disseminate geriatric curriculum,
train faculty members, and provide continuing education. The
Nurse Faculty Loan program provides a student loan fund
administered by schools of nursing to increase the number of
qualified nurse faculty.
--The loan programs under Student Financial Assistance support
financially disadvantaged health professions students. The
Nursing Student Loan (NSL) is for undergraduate and graduate
nursing students with a preference for those with the greatest
financial need. The Primary Care Loan (PCL) program provides
loans in return for dedicated service in primary care. The
Health Professional Student Loan (HPSL) program provides loans
for financially needy health professions students based on
institutional determination. These programs are funded out of
each institution's revolving fund and do not receive Federal
appropriations. The Loans for Disadvantaged Students program
provides grants to institutions to make loans to health
professions students from disadvantaged backgrounds.
By improving the supply, distribution, and diversity of the
Nation's health care professionals, the Title VII and Title VIII
programs not only prepare aspiring professionals to meet the Nation's
workforce needs, but also help to improve access to care across all
populations. Further, with the Bureau of Labor Statistics projecting
that the health care industry will generate 3.2 million jobs through
2018 (more than any other industry), these programs can help
individuals in reaching their career goals and communities in filling
their health needs. The multi-year nature of health professions
education and training, coupled with provider shortages across many
disciplines and in many communities, necessitate a strong, continued,
and reliable commitment to the Title VII and Title VIII programs.
While HPNEC members understand the immense fiscal pressures facing
the subcommittee, we respectfully urge support for $520 million for the
Title VII and VIII programs. We look forward to working with the
subcommittee to prioritize the health professions programs in fiscal
year 2014 and into the future.
______
Prepared Statement of the HIV Medicine Association
The HIV Medicine Association (HIVMA) of the Infectious Diseases
Society of America (IDSA) represents more than 5,000 physicians,
scientists and other health care professionals who practice on the
frontline of the HIV/AIDS pandemic. Our members provide medical care
and treatment to people with HIV/AIDS throughout the U.S., lead HIV
prevention programs and conduct research to develop effective HIV
prevention and treatment options. We work in communities across the
country and around the globe as medical providers and researchers
dedicated to the field of HIV medicine.
We recognize the difficult fiscal environment Congress is facing.
However, as you make tough spending decisions for fiscal year 2014, we
strongly urge you to maintain adequate funding for critical HIV/AIDS
treatment, prevention and research programs. Our past investment in
HIV-related research has supported critical discoveries that now allow
leaders worldwide to envision a world without AIDS.
Despite our remarkable progress in HIV prevention, diagnosis and
treatment, HIV/AIDS remains a serious and significant epidemic in the
United States with a record 1.2 million people living with HIV and an
estimated 50,000 new infections occurring annually. HIV disease
disproportionately impacts racial and ethnic minority communities and
low income people who depend on public services for their life-saving
health care and treatment. Early and reliable access to HIV care and
treatment help patients with HIV live healthy and productive lives and
is cost effective. In addition, having persons living with HIV
virologically suppressed on antiretroviral therapy decreases
transmission of HIV and thus is critical in curbing the epidemic. The
comprehensive, expert HIV care model that is supported by the Ryan
White Program has been highly successful at achieving positive clinical
outcomes with a complex patient population. In fact, Ryan White funded
clinics have become models for ``medical homes''. Once in care,
patients who attend at least one Ryan White medical visit do well--with
70 percent of those on antiretroviral treatment having undetectable
levels of the virus in their blood. This is much higher than the
estimate from the CDC that just 25 percent of people living with HIV in
the U.S. are virally suppressed. The annual health care costs for HIV
patients who are not able to achieve viral suppression (often due to
delayed diagnosis and care) are nearly 2.5 times that of healthier HIV
patients.
In order to dramatically change the trajectory of the HIV epidemic
in the U.S. and around the world, we strongly urge you to support at
minimum the President's proposed fiscal year 2014 funding levels for
the Centers for Disease Control and Prevention (CDC)'s HIV and STD
prevention programs and the Ryan White Program at the Health Resources
and Services and Administration, as well as the President's fiscal year
2014 request level for the medical research supported by the National
Institutes of Health, including the President's proposed $47 million
increase for HIV/AIDS research across the institutes and centers.
Failure to maintain adequate funding for these critical priorities will
set us back in the fight against HIV infection and harm the Nation's
health and fiscal well-being. The funding requests in our testimony
largely reflect the consensus of the Federal AIDS Policy Partnership
(FAPP), a coalition of HIV organizations from across the country, and
are estimated to be the amounts necessary to strengthen our investment
in combatting HIV disease and meet the need in communities across the
country.
Health Care Reform.--We strongly support at a minimum the
President's fiscal year 2014 request level for health care reform
discretionary funding under the Patient Protection and Affordable Care
Act (ACA). Of particular importance is funding to support health care
workforce education and training programs under Titles VII and VIII of
the Public Health Service Act (PHSA); health care quality improvement
programs, and the Medicare and Medicaid demonstration programs.
If we are to succeed in improving the quality and efficiency of our
health care delivery system while addressing health care costs, it is
essential to fully fund the Centers for Medicare and Medicaid
Innovation (CMMI). In particular, we would hope to see CMMI evaluate
the health outcomes and cost effectiveness of managing the care of
people with HIV through ``patient centered medical homes.'' HIV disease
is included among the qualifying chronic disease conditions under the
new State Medicaid Health Home option that allows Medicaid enrollees
with at least two chronic conditions to designate a provider as a
health home. Since a majority of people with HIV rely on Medicaid for
their health care coverage, it is vital that this model of care is
pilot-tested and supported by Medicaid programs.
HIV/AIDS Bureau of the Health Resources and Services
Administration.--We strongly urge you to increase funding for the Ryan
White Program by $276 million in fiscal year 2014 with at least an
increase of $21.5 million over the fiscal year 2013 continuing
resolution level for Part C. Ryan White Part C funds comprehensive HIV
care and treatment--services that are directly responsible for the
dramatic decreases in AIDS-related mortality and morbidity over the
last decade. On average it costs $3,501 per person per year to provide
the comprehensive outpatient care available at Part-C funded programs
(excluding medications), including lab work, STD/TB/Hepatitis
screening, ob/gyn care, dental care, mental health and substance abuse
treatment, and case management. Part C funding covers a small
percentage of the total cost of providing comprehensive care with some
programs receiving $450 or lower per patient per year to cover care.
The HIV medical clinics funded through Part C have been in dire need of
increased funding for years, but efforts to bring more people with HIV
into care through routine HIV screening along with ongoing economic
pressures are creating a crisis in communities across the country. An
increase in funding is critical to prevent additional staffing and
service cuts and ensure the public health of our communities. At a bare
minimum, we strongly urge you to support an increase of $20 million
over fiscal year 2013 appropriated funding for Ryan White Part C.
Center for Disease Control and Prevention's (CDC) National Center
for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention (NCHHSTP).--HIVMA
strongly urges total fiscal year 2014 funding of $1.424 billion for the
CDC's NCHHSTP, an increase of $314 million over the fiscal year 2013
level, including increases of: $180 million for HIV prevention and
surveillance, $5.3 million for viral hepatitis and $102.7 million for
Tuberculosis prevention.
Every nine and a half minutes a new HIV infection happens in the
U.S. with more than 60 percent of new cases occurring among African
Americans and Hispanic/Latinos. The CDC estimates that the 50,000 new
HIV infections each year in the U.S. may result in $56 billion in
medical care and lost productivity costs. Despite the known benefit of
effective treatment, nearly 20 percent of people living with HIV in the
U.S. are still not aware of their status and as many as 36 percent of
people newly diagnosed with HIV progress to AIDS within 1 year of
diagnosis. A sustained commitment to HIV prevention funding is critical
to enhance HIV/AIDS surveillance and expand HIV testing and linkage to
care, in order to lower HIV incidence and prevalence in the U.S.
Particularly in light of steep State budget cuts, a failure to invest
now in HIV prevention will be costly. At a bare minimum we strongly
urge the Committee to at least support an increase of $180 million for
HIV prevention and an increase of $5.3 million for viral hepatitis at
the CDC. We also support a funding level of at least $363 million for
CDC's global health programs, which includes resources for the agency's
essential role in implementing PEPFAR programs in developing nations.
Agency for Health Care Quality and Research (AHRQ).--HIVMA urges
the Committee to provide $2 million for the HIV Research Network
(HIVRN). The HIVRN is a consortium of 19 HIV primary care sites co-
funded by AHRQ and HRSA to evaluate health care utilization and
clinical outcomes in HIV infected children, adolescents and adults in
the U.S. The Network analyzes and disseminates information on the
delivery and outcomes of health care services to people with HIV
infection. These data help to improve delivery and outcomes of HIV care
in the U.S. and to identify and address disparities in HIV care that
exist by race, gender, and HIV risk factor. The HIVRN is a valuable and
highly utilized source of information on the cost and cost-
effectiveness of HIV care in the U.S. at a time when such data is
particularly needed to inform health systems reform and the development
and implementation of a National HIV/AIDS Strategy.
National Institutes of Health (NIH)--Office of AIDS Research
(OAR).--HIVMA strongly supports an fiscal year 2014 funding level of
$36 billion for the NIH, including $3.6 billion for the NIH Office of
AIDS Research. This level of funding is vital to sustain the pace of
research that will improve the health and quality of life for millions
of men, women and children in the U.S. and in the developing world. Our
past investment in a comprehensive portfolio was responsible for the
dramatic gains that we made in our HIV knowledge base, gains that
resulted in reductions in mortality from AIDS of nearly 80 percent in
the U.S. and in other countries where treatment is available. Gains
that also helped us to reduce the mother to child HIV transmission rate
from 25 percent to less than 1 percent in the U.S. and to very low
levels in other countries where treatment is available.
Strong, sustained NIH funding is a critical national priority that
will foster better health, economic revitalization and an effective
National HIV/AIDS Strategy. In every State across the country, the NIH
supports research at hospitals, universities and medical schools, and
community based service organizations. This includes the creation of
jobs that will be essential to future discovery. Sustained increases in
funding are also essential to train the next generation of scientists
and prepare them to make tomorrow's HIV discoveries.
The benefits of HIV research are far reaching. Researchers have
applied HIV research methods and findings to studying and treating
other serious conditions, such as cancer, and hepatitis B and C virus.
Congress should ensure the Nation does not delay vital HIV/AIDS
research progress. We must increase HIV/AIDS research funding to
sustain medical research capacity and maintain our worldwide leadership
in HIV/AIDS research leadership and innovation.
Policy Riders--Remove the Harmful Ban on Federal Funding for
Syringe Exchange Programs.--HIVMA strongly urges adoption of language
included in the President's fiscal year 2014 budget that would re-
instate language previously enacted into law in fiscal year 2010 and
fiscal year 2011 allowing Federal funding to be used for syringe
exchange programs. Such action will support local control by letting
local communities make their own decisions about how best to prevent
new HIV and viral hepatitis infections. It is well proven that syringe
exchange programs are a cost-effective means to lower rates of HIV/AIDS
and viral hepatitis, reduce the use of illegal drugs and help connect
people to medical treatment, including substance abuse treatment. We
cannot afford to dismiss any of the scientifically proven tools in the
HIV prevention tool box if we are going to end AIDS in the U.S. and
around the globe.
CONCLUSION
Historically, our Nation has made significant strides in responding
to the HIV pandemic here at home and around the world, but we have lost
ground in recent years, as funding priorities have shifted away from
public health and research programs. We appreciate the many difficult
decisions that Congress faces this year, but urge you to recognize the
importance of investing in HIV prevention, treatment and research now
to avoid the much higher cost that individuals, communities and broader
society will incur if we fail to support these programs. We must seize
the opportunity to limit the toll of this deadly infectious disease on
our planet, to save the lives of millions who are infected or at risk
of infection here in the U.S. and around the globe, and to realize the
vision of an AIDS-free generation.
______
Prepared Statement of the Humane Society of the United States and
Humane Society Legislative Fund
On behalf of The Humane Society of the United States (HSUS) and the
Humane Society Legislative Fund (HSLF), we appreciate the opportunity
to provide testimony on our top NIH funding priorities for the House
Labor, Health and Human Services, Education and Related Agencies
Appropriations Subcommittee in fiscal year 2014.
SUPPORT OF FEDERALLY OWNED CHIMPANZEES IN SANCTUARY
The HSUS and HSLF request that Congress address budget issues
currently restricting chimpanzee sanctuary expenditures so that the
National Institutes of Health can make cost-effective and humane
decisions regarding the care of these animals.
In 2000, Congress passed the Chimpanzee Health Improvement
Maintenance and Protection Act (CHIMP Act) that established the
national chimpanzee sanctuary system for chimpanzees no longer used in
research and included a $30 million cap on related Federal
expenditures. No such cap exists for spending on maintaining
chimpanzees in laboratories--a more expensive and less humane form of
housing. Unfortunately, the sanctuary expenditure cap is about to be
reached, at just the moment when NIH is poised to declare that nearly
all federally-owned chimpanzees should be retired to sanctuary. This
crisis can be averted by enacting a sentence (see Language Requested
below) in the final fiscal year 2014 budget.
Further basis of our request can be found below.
Background Cost Information
Currently, NIH owns approximately 580 chimpanzees and is
responsible for their lifetime care and support. Of those chimpanzees,
roughly 360 continue to be housed in laboratories. According to an
independent economic analysis conducted for The HSUS in 2012, the
average per diem cost to taxpayers of maintaining a chimpanzee in a
laboratory is $60. The per diem cost to taxpayers of caring for a
chimpanzee in the national sanctuary system during the same time was
$44. As a result of economies of scale, the per diem for sanctuary care
is projected to decrease to $32 per chimpanzee with the addition of 100
chimpanzees.\1\
Given that chimpanzees can live up to 60 years in captivity, the
difference in per diem costs can add up quickly. The Government would
save a substantial amount of money over time by moving the Government
owned chimpanzees to the national sanctuary.
Chimpanzees are not necessary for most research
In December of 2011, the Institute of Medicine (IOM) and National
Research Council released a report which found that chimpanzees are
``largely unnecessary'' for research and, further, could not identify
any current area of research for which chimpanzees are essential. The
report also called for a sharp reduction in the use of chimpanzees in
research and noted that the ``current trajectory indicates a decreasing
scientific need for chimpanzee studies due to the emergence of non-
chimpanzee models and technologies.'' \2\
Following that report, the National Institutes of Health
immediately accepted the IOM findings and created an independent
Council of Councils Working Group of experts to advise the agency on
implementation of the findings. After nearly a year of deliberations,
the Working Group presented their recommendations in January 2013.
Among other things, the recommendations included the retirement of the
majority of the more than 350 Government-owned chimpanzees currently in
laboratories to sanctuary, a substantial decrease in the number of
Government funded grants involving chimpanzees in laboratories and no
revitalization of chimpanzee breeding for research purposes.\3\
The NIH is expected to make a final decision on the recommendations
in the very near future. But, given the consistent results of the IOM
and NIH Working Group reports, it's safe to anticipate that a large
number of chimpanzees will be retired in the near future. By including
the language suggested here, Congress can ensure cost-effective
sanctuary space is available so NIH is not forced to maintain retired
chimpanzees in more expensive laboratories.
Ethologically appropriate chimpanzee housing only available in
sanctuary
In addition to their other findings, the IOM committee stated that
chimpanzees used in research should be kept in ``ethologically
appropriate physical and social environments.'' However, the concept
was not clearly defined in the IOM report. Therefore, the NIH Council
of Councils Working Group produced several recommendations to more
clearly define ``ethologically appropriate'' environments for
chimpanzees.\2\ Those recommendations included providing large, complex
social groups, year round outdoor access and more than 1,000 square
feet of living space per chimpanzee, among other things. Importantly,
no laboratory meets the Working Group's definition of ``ethologically
appropriate'' and the report described the national sanctuary system as
the ``most species-appropriate environment currently available.'' \3\
Upgrading laboratories to meet the needs of chimpanzees would be
extremely expensive and, given the lack of necessity for chimpanzees in
research, a waste of taxpayer dollars. It makes fiscal sense to send
retired chimpanzees to sanctuary where they will receive optimal care
at a lower cost than in laboratories.
Ethical and public concerns
Americans are clearly concerned about the use of chimpanzees in
research and believe that chimpanzees deserve sanctuary. A national
poll found that 74 percent support permanent retirement to sanctuaries
for chimpanzees no longer used in experiments; 71 percent believe that
chimpanzees who have been in the laboratory for over 10 years should be
sent to sanctuary for retirement \4\; and 54 percent believe that it is
unacceptable for chimpanzees to ``undergo research which causes them to
suffer for human benefit.'' \5\
We respectfully request the following bill language: ``Funds
provided to the National Institutes of Health in this and subsequent
acts may be used to support the Sanctuary System for Surplus
Chimpanzees authorized by section 404K of the Public Health Service
Act, including for the construction, renovation, and funding of current
or additional facilities of the sanctuary system as authorized by
section 404K, notwithstanding the limitations in subsection (g) of such
section.''
We appreciate the opportunity to share our views for the Labor,
Health and Human Services, Education and Related Agencies
Appropriations Act for fiscal year 2014. We hope the Committee will be
able to accommodate this modest request that will save the Government a
substantial sum of money, benefit chimpanzees, and allay some concerns
of the public at large. Thank you for your consideration.
recommendations of the council of councils working group on the use of
CHIMPANZEES IN NIH-SUPPORTED RESEARCH
As was discussed above, in their December 2011 report entitled
Chimpanzees in Biomedical and Behavioral Research: Assessing the
Necessity, the Institute of Medicine found that chimpanzees are
``largely unnecessary'' for current research. Following the IOM report,
the National Institutes of Health commissioned an independent Working
Group of experts to advise them on how to implement the findings of the
IOM report. The Working Group released their recommendations in January
2013.
These recommendations include retiring the majority of federally
owned chimpanzees to sanctuary, a clear set of criteria for housing and
maintaining chimpanzees in a manner appropriate to the needs of the
species, a decrease in grants for chimpanzee research, a rigorous
review process for protocols to ensure that any future research
conducted on chimpanzees is necessary, a cessation of breeding for
research and an increased investment in alternatives to chimpanzee use.
The Working Group has also recommended that a small number of
chimpanzees be available for research in the unlikely event of a new or
reemerging threat that requires it. However, the Working Group advised
that these chimpanzees be kept in ethologically appropriate conditions
and that the need for this group should be reassessed frequently.
By adopting these recommendations, NIH will not only free up funds
that would otherwise be spent on unnecessary chimpanzee research to be
spent on research that is more relevant to human health, it will save
taxpayer dollars by retiring the chimpanzees into the less-costly
sanctuary system, providing them with optimal care.
We respectfully request the following committee report language:
``The Committee thanks the National Institutes of Health for their
thorough review of the use of chimpanzees in research and supports the
acceptance and implementation of the recommendations proposed by the
NIH Council of Councils Working Group on the Use of Chimpanzees in NIH-
supported Research. In particular, we urge implementation of those
recommendations related to the retirement to sanctuary of hundreds of
government-owned chimpanzees, phasing out of current biomedical
research on chimpanzees, meeting standards for ethologically
appropriate physical and social environments for chimpanzees,
prohibiting NIH financial support for chimpanzee breeding, creation of
an independent Oversight Committee to ensure a proper and transparent
review of any future uses of chimpanzees in government-funded research
and increased funding for alternative research methods. These
recommendations are in the best interests of human health and
chimpanzee welfare. They will also result in significant taxpayer
savings because care in ethologically appropriate sanctuaries is less
expensive than care in laboratories and, further, the federal
government will no longer be footing the bill for unnecessary and
costly research protocols and breeding programs.''
HIGH THROUGHPUT SCREENING, TOXICITY PATHWAY PROFILING, AND BIOLOGICAL
INTERPRETATION OF FINDINGS
NATIONAL INSTITUTES OF HEALTH--OFFICE OF THE DIRECTOR
In 2008, NIH, NIEHS and EPA signed a memorandum of understanding
(MOU) to collaborate with each other to identify and/or develop high
throughput screening assays that investigate ``toxicity pathways'' that
contribute to a variety of adverse health outcomes (e.g., from acute
oral toxicity to long-term effects like cancer). In addition, the MOU
recognized the necessity for these Federal research organizations to
work with ``acknowledged experts in different disciplines in the
international scientific community.'' Much progress has been made,
including FDA joining the MOU, but there is still a significant amount
of research, development and translational science needed to bring this
vision forward to where it can be used with confidence for safety
determinations by regulatory programs in the Government and product
stewardship programs in the private sector. In particular, there is a
growing need to support research to develop the key science-based
interpretation tools which will accelerate using 21st century
approaches for predictive risk analysis. We believe the Office of the
Director at NIH can play a leadership role for the entire U.S.
Government by funding both extramural and intramural research.
In April, 2013, the Obama Administration announced an initiative to
map the human brain, Brain Research through Advancing Innovative
Neurotechnologies (BRAIN), which the White House describes as ``a bold
new research effort to revolutionize our understanding of the human
mind.'' According to the White House, the Brain Initiative will `` . .
. accelerate the development and application of new technologies that
will enable researchers to produce dynamic pictures of the brain that
show how individual brain cells and complex neural circuits interact at
the speed of thought.'' \6\ The goals of this initiative are to shed
light on normal brain function as well as understanding the development
of neurological diseases such as Alzheimer's and Parkinson's, childhood
developmental issues such as autism, and acute events such as stroke--
and hopefully find new ways of treating them.
We respectfully request the following committee report language,
which is supported by The HSUS, HSLF and the American Chemistry
Council:
NIH Director
``The Committee supports NIH's leadership role in the
creation of a new paradigm for chemical risk assessment based
on the incorporation of advanced molecular biological and
computational methods in lieu of animal toxicity tests. NIH has
indicated that development of this science is critical to
several of its priorities, from personalized medicine to
tackling specific diseases such as cancer and diabetes and
including critical initiatives such as BRAIN. The Committee
encourages NIH to continue to expand both its intramural and
extramural support for the use of human biology-based
experimental and computational approaches in health research to
further define human biology, disease pathways and toxicity and
to develop tools for their integration into evaluation
strategies. Extramural and intramural funding should be made
available for the evaluation of the relevance and reliability
of human biology-based and Tox21-related methods and prediction
tools to assure readiness and utility for regulatory purposes,
including pilot studies of pathway-based risk assessments. The
Committee requests NIH provide a report on associated funding
in FY 2014 for such activity and a progress report of related
activities in the congressional justification request,
featuring a 5-year plan for projected budgets for the
development of human biology-based and Tox21-related methods,
including prediction models, and activities specifically
focused on establishing scientific confidence in them for
regulatory use. The Committee also requests NIH prioritize an
additional (1-3%) of its research budget within existing funds
for such activity.''
---------------------------------------------------------------------------
\1\ Phillips, Carl for The Humane Society of the United States
(2012) Federal Government budget savings from defunding invasive
research on chimpanzees and retiring Government-owned laboratory
chimpanzees to sanctuary [white paper].
\2\ Institute of Medicine and National Research Council. (2011).
Chimpanzees in Biomedical and Behavioral Research: Assessing the
Necessity. National Academies Press: Washington, D.C.
\3\ 2013 Report of the National Institutes of Health Council of
Councils Working Group on the Use of Chimpanzees in NIH-Supported
Research.
\4\ 2006 poll conducted by the Humane Research Council for Project
Release & Restitution for Chimpanzees in laboratories.
\5\ 2001 poll conducted by Zogby International for the Chimpanzee
Collaboratory.
\6\ Boseley, S. 2013. Obama unveils brain mapping initiative and
calls for further research. The Guardian, Tuesday 2 April 2013. http://
www.guardian.co.uk/science/2013/apr/02/obama-brain-
initiative-fight-disease.
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______
Prepared Statement of the Infectious Diseases Society of America
The Infectious Diseases Society of America (IDSA) represents more
than 10,000 infectious diseases (ID) physicians and scientists devoted
to patient care, prevention, public health, education, and research.
Investment in ID research and public health efforts can reduce health
care costs, save lives, and create jobs. IDSA urges you to provide
strong funding for the Department of Health and Human Services' (HHS)
National Institutes of Health, Centers for Disease Control and
Prevention, Office of the Assistant Secretary for Preparedness and
Response, and Biomedical Advanced Research and Development Authority as
well as adopt appropriate report language for the Centers for Medicare
and Medicaid Services.
NATIONAL INSTITUTES OF HEALTH (NIH)
NATIONAL INSTITUTE OF ALLERGY AND INFECTIOUS DISEASES (NIAID)
IDSA recommends that the subcommittee continue to invest strongly
in medical research funding at the NIH, and at NIAID, in particular, so
that patients may continue to benefit from the live-saving benefits
that medical research affords. In April, IDSA released an updated
report on the dire status of the antibiotic pipeline, which found only
seven (7) antibiotics to treat Gram-negative bacteria, which represent
the most urgent needs, in Phase II development or later. Given the
growing crisis related to antibiotic-resistant infections and the lack
of new antibiotics in development (read more at
www.AntibioticsNow.org), we believe it is particularly imperative that
NIAID invest more vigorously in antibacterial resistance research,
including related diagnostics research, so that our Nation can better
respond to these dangerous and expensive pathogens, which threaten
patient care, public health and national security. Our funding goal for
NIAID's antibacterial resistance and related diagnostics efforts is at
least $500 million annually by the end of fiscal year 2014. As part of
this effort, we believe NIAID should invest at least $100 million/year
in the antibiotic-resistance focused clinical trials network that the
institute now is establishing and which should be up and running in
2014. NIAID should be applauded for establishing this new network, but
unfortunately, the planned investment of $10 million/year over the next
7 years will not be sufficient to undertake the critical studies needed
to address what are quickly becoming untreatable infections.
The subcommittee also should adopt report language urging NIAID to
invest in research on new antiviral drugs and related diagnostics that
are effective against emerging drug-resistant influenza variants. The
dearth of novel antiviral influenza drugs is of concern, especially as
resistance grows.
IDSA also urges the subcommittee to restore the salary cap for NIH
grantees to Executive Level I. The salary cap reduction enacted in
fiscal year 2012 disproportionately affects physician-investigators and
serves as a deterrent to their recruitment into research careers.
CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC)
NATIONAL CENTER FOR EMERGING AND ZOONOTIC INFECTIOUS DISEASES (NCEZID)
IDSA supports strong funding for NCEZID, which houses CDC's
antimicrobial resistance activities. We must be able to track
resistance, understand its driving factors and measure the impact of
efforts to limit resistance. State and local public health laboratories
are key, but they depend largely upon CDC for funding, and currently
only about half of them can provide some level of antimicrobial
susceptibility testing. NCEZID also needs strong funding to enhance
data collection on antimicrobial use and to promote the uptake of
antimicrobial stewardship programs to help protect the effectiveness of
these precious drugs. In particular, IDSA urges the subcommittee to
fully fund two requests in the President's budget proposal: (1) the
Advanced Molecular Detection (AMD) initiative and (2) the National
Healthcare Safety Network (NHSN). AMD is a necessary and overdue effort
that will allow CDC to more quickly determine the origin of emerging
diseases, whether microbes are resistant to antibiotics, and how
microbes are moving through a population. The AMD initiative will
strengthen CDC's epidemiologic and laboratory expertise to effectively
guide public health action. Additional funding for NHSN will allow CDC
to further invest in the EpiCenters--five academic centers which
conduct research projects on health care-associated infections and
antibiotic-resistant infections. The EpiCenters have survived on a $2
million budget over the past 15 years with no increase. Critical areas
where the EpiCenters could expand their work include: evaluating
interventions to prevent or limit the development of antimicrobial
resistance, facilitating public health research on the prevention and
control of resistant organisms, and assessing the appropriateness of
surveillance and prevention programs in health care and institutional
settings. IDSA also urges strong funding for the Emerging Infections
Program (EIP) to assess the epidemiology of emerging resistant
pathogens in infectious diseases of public health importance.
IDSA also encourages the subcommittee to adopt antimicrobial
resistance report language to encourage the following activities to the
extent possible given the current budgetary constraints:
--Urging CDC to implement prevention collaboratives with State health
departments to prevent the transmission of significant
resistant pathogens across health care settings.
--Encouraging CDC to expand academic public health partnerships
through the EpiCenters.
--Recommending CDC pilot and test quality measures to help measure
antimicrobial use.
NATIONAL CENTER FOR IMMUNIZATION AND RESPIRATORY DISEASES (NCIRD)
IDSA recommends strong funding for NCIRD, including the Section 317
Immunization Program. The Society remains concerned that the
Administration once again has proposed decreasing immunizations
funding. Even with implementation of expanded immunizations coverage
under the Affordable Care Act, immunization funding through CDC is
needed to help providers obtain and store vaccines; establish and
maintain vaccine registries; provide education about vaccines; and
promote vaccination of health care workers. IDSA recommends report
language urging CDC to work with State and local governments to ensure
immunization recommendations, defined by the Advisory Committee on
Immunization Practices (ACIP), are implemented except when medically-
contraindicated.
Given that recent outbreaks of pertussis (whooping cough) are among
the largest in the U.S. during the past half century, it is
particularly important to ensure that more individuals receive this
vaccination.
Also worrisome, influenza vaccination rates among health care
workers overall remained stagnant in 2012. Funding to address this
issue is critical to protect the health of those individuals most
needed to respond to influenza outbreaks and pandemics and to protect
patients at risk of infection.
IDSA strongly supports the President's proposed funding increase
for influenza preparedness activities. In IDSA's recently updated
Pandemic and Seasonal Influenza Principles for United States Action,
the Society recommends strong funding for such activities, including
public health infrastructure and countermeasures as well as long-term
governmental coordination and planning. Lack of sufficient funding
could lead to an increased incidence and severity of influenza,
hospitalization costs and mortality.
Recent infectious outbreaks have underscored the need for a strong
investment to maintain our capacity to detect and respond to
emergencies as they occur, such the fungal meningitis outbreak caused
by a contaminated steroid product that killed more than 50 people, and
emerging H7N9 influenza in China, as well as infectious threats
associated with disasters such as Hurricanes Katrina and Sandy. Funding
is needed to provide coordination, guidance and technical assistance to
State and local governments; support the Strategic National Stockpile;
strengthen and sustain epidemiologic and public health laboratory
capacity; and provide clear and effective communications during an
emergency.
THE NATIONAL CENTER FOR HIV, VIRAL HEPATITIS, STD AND TB PREVENTION
(NCHHSTP)
IDSA strongly urges total fiscal year 2014 funding of $1.424
billion for the CDC's NCHHSTP, an increase of $314 million over the
fiscal year 2013 level, including increases of: $180 million for HIV
prevention and surveillance, $5.3 million for viral hepatitis and
$102.7 million for Tuberculosis prevention.
Every nine and a half minutes a new HIV infection happens in the
U.S. with more than 60 percent of new cases occurring among African
Americans and Hispanic/Latinos. The CDC estimates that the 50,000 new
HIV infections each year in the U.S. may result in $56 billion in
medical care and lost productivity costs. Despite the known benefit of
effective treatment, nearly 20 percent of people living with HIV in the
U.S. are still not aware of their status and as many as 36 percent of
people newly diagnosed with HIV progress to AIDS within 1 year of
diagnosis. A sustained commitment to HIV prevention funding is critical
to enhance HIV/AIDS surveillance and expand HIV testing and linkage to
care, in order to lower HIV incidence and prevalence in the U.S.
Particularly in light of steep State budget cuts, a failure to invest
now in HIV prevention will be costly. At a bare minimum we strongly
urge the Committee to at least support an increase of $180 million for
HIV prevention and an increase of $5.3 million for viral hepatitis at
the CDC. We also support a funding level of at least $363 million for
CDC's global health programs, which includes resources for the agency's
essential role in implementing PEPFAR programs in developing nations.
A strong investment is needed to implement CDC's new hepatitis C
screening policy, including funding to support education, testing,
referral, vaccination and surveillance. Hepatitis B and C affect nearly
six million Americans, the vast majority of whom do not know they are
infected. These infections lead to chronic liver disease, with a loss
of 15,000 lives each year,\1\ liver cancer, and increased
transplantations for those suffering liver failure.
IDSA recommends strong funding to support Federal, State, and local
health tuberculosis (TB) detection, treatment, and prevention efforts.
Adequate funding also must be directed to the TB Trials Consortium that
is testing new TB therapeutics--an urgent need as the threat of drug-
resistant TB grows.
ASSISTANT SECRETARY FOR PREPAREDNESS AND RESPONSE (ASPR)
In addition to strongly investing in ASPR's critical preparedness
and response activities, IDSA urges the subcommittee to adopt report
language to encourage the development of clear Federal guidelines for
conducting research during a public health emergency. Specifically,
report language should urge the ASPR to include the Office for Human
Research Protections (OHRP) and other HHS offices and agencies involved
in public health emergency research in the ASPR-led discussions
concerning a public health emergency research review board. Also, ASPR
should issue appropriate provisions and guidances to reduce ambiguity
and improve harmonization among various agencies.
BIOMEDICAL ADVANCED RESEARCH AND DEVELOPMENT AUTHORITY (BARDA)
IDSA supports robust funding for BARDA to facilitate advanced
research and development (R&D) of medical countermeasures, including
therapeutics, diagnostics, vaccines, and other technologies, including
new antibiotics to address both intentional attacks and naturally
emerging infections. BARDA is a critical source of funding for public-
private collaborations for antibiotic R&D.
INDEPENDENT STRATEGIC INVESTMENT FIRM
IDSA supports the establishment and funding of the Medical
Countermeasure Strategic Investor (MCMSI), proposed by the ASPR in
August 2010 and again included in the President's fiscal year 2014
budget request. The MCMSI would be a non-government, non-profit entity
that would partner with small ``innovator'' companies and private
investors to address urgent needs, including the development of novel
antimicrobials.
CENTERS FOR MEDICARE AND MEDICAID SERVICES (CMS)
IDSA urges the subcommittee to adopt report language urging CMS to
help address the growing problem of antimicrobial resistance by working
with healthcare institutions to develop and implement physician-led
antimicrobial stewardship programs in all healthcare facilities.
Moreover, we ask for report language that supports the submission
by acute care hospitals of summary data on influenza vaccination of
health care personnel and the expansion of this requirement to all
hospitals and nursing facilities.
HEALTH RESOURCES AND SERVICES ADMINISTRATION (HRSA)
HIV/AIDS BUREAU
IDSA strongly urges the subcommittee to increase funding for the
Ryan White Program by $276 million in fiscal year 2014 with at least an
increase of $21.5 million over the fiscal year 2013 continuing
resolution level for Part C. Ryan White Part C funds comprehensive HIV
care and treatment--services that are directly responsible for the
dramatic decreases in AIDS-related mortality and morbidity over the
last decade. On average it costs $3,501 per person per year to provide
the comprehensive outpatient care available at Part-C funded programs
(excluding medications), including lab work, STD/TB/Hepatitis
screening, ob/gyn care, dental care, mental health and substance abuse
treatment, and case management. Part C funding covers a small
percentage of the total cost of providing comprehensive care with some
programs receiving $450 or lower per patient per year to cover care.
The HIV medical clinics funded through Part C have been in dire need of
increased funding for years, but efforts to bring more people with HIV
into care through routine HIV screening along with ongoing economic
pressures are creating a crisis in communities across the country. An
increase in funding is critical to prevent additional staffing and
service cuts and ensure the public health of our communities. At a bare
minimum, IDSA strongly urges you to support an increase of $20 million
over fiscal year 2013 appropriated funding for Ryan White Part C.
Thank you again for the opportunity to submit this statement on
behalf of the Nation's infectious diseases physicians and scientists.
Forward any questions to [email protected].
---------------------------------------------------------------------------
\1\ ``Combating the Silent Epidemic of Viral Hepatitis: Action Plan
for the Prevention, Care and Treatment of Viral Hepatitis,'' U.S.
Department of Health and Human Services (May, 2011).
---------------------------------------------------------------------------
______
Prepared Statement of the International Foundation For Functional
Gastrointestinal Disorders
_______________________________________________________________________
1) $32 billion for the National Institutes of Health (NIH) at an
increase of $1 billion over fiscal year 2012. Increase funding for the
National Cancer Institute (NCI), the National Institute of Diabetes and
Digestive and Kidney Diseases (NIDDK) and the National Institute of
Allergy and Infectious Diseases (NIAID) by 12 percent.
2) Continue focus on Digestive Disease Research and Education at
NIH, including), Irritable Bowel Syndrome (IBS), Fecal Incontinence
Gastroesophageal Reflux Disease (GERD) Gastroparesis, and Cyclic
Vomiting Syndrome (CVS).
_______________________________________________________________________
Thank you for the opportunity to present the views of the
International Foundation for Functional Gastrointestinal Disorders
(IFFGD) regarding the importance of functional gastrointestinal and
motility disorders (FGIMD) research. Established in 1991, IFFGD is a
patient-driven nonprofit organization dedicated to assisting
individuals affected by FGMIDs, and providing education and support for
patients, healthcare providers, and the public. IFFGD also works to
advance critical research on FGIMDs in order to develop better
treatment options and to eventually find cures. IFFGD has worked
closely with the National Institutes of Health (NIH) on many
priorities, and I served on the National Commission on Digestive
Diseases (NCDD), which released a long-range plan in 2009, entitled
Opportunities and Challenges in Digestive Diseases Research:
Recommendations of the National Commission on Digestive Diseases.
The need for increased research, more effective and efficient
treatments, and the hope for discovering a cure for FGIMDs are close to
my heart. My own experiences of suffering from FGIMDs motivated me to
establish IFFGD, and I was shocked to discover that despite the high
prevalence of FGIMDs among all demographic groups, such a lack of
research existed. This translates into a dearth of diagnostic tools,
treatments, and patient supports. Even more shocking is the lack of
awareness among the medical community and the public, leading to
significant delays in diagnosis, frequent misdiagnosis, and
inappropriate treatments including unnecessary surgery. Most FGIMDs
have no cure and limited treatment options, so patients face a lifetime
of chronic disease management. The costs associated with these diseases
range from $25-$30 billion annually; economic costs are also reflected
in work absenteeism and lost productivity.
IRRITABLE BOWEL SYNDROME (IBS)
IBS affects 30 to 45 million Americans, conservatively at least 1
out of every 10 people. It is a chronic disease that causes abdominal
pain and discomfort associated with a change in bowel pattern, such as
diarrhea and/or constipation. As a ``functional disorder,'' IBS affects
the way the muscles and nerves work, but the bowel does not appear to
be damaged on medical tests. Without a diagnostic test, IBS often goes
undiagnosed or misdiagnosed for years. Even after IBS is identified,
treatment options are limited and vary from patient to patient. Due to
persistent pain and bowel unpredictability, individuals may distance
themselves from social events and work. Stigma surrounding bowel habits
may act as barrier to treatment, as patients are not comfortable
discussing their symptoms with doctors. Many people also dismiss their
symptoms or attempt to self-medicate with over-the-counter medications.
Outreach to physicians and the general public remain critical to
overcome these barriers to treatment and assist patients.
FECAL INCONTINENCE
At least 12 million Americans suffer from fecal incontinence.
Incontinence crosses all age groups, but is more common among women and
the elderly of both sexes. Often it is associated with neurological
diseases, cancer treatments, spinal cord injuries, multiple sclerosis,
diabetes, prostate cancer, colon cancer, and uterine cancer. Causes of
fecal incontinence include: damage to the anal sphincter muscles,
damage to the nerves of the anal sphincter muscles or the rectum, loss
of storage capacity in the rectum, diarrhea, or pelvic floor
dysfunction. People may feel ashamed or humiliated, and most attempt to
hide the problem for as long as possible. Some don't want to leave the
house in fear they might have an accident in public; they withdraw from
friends and family, and often limit work or education efforts.
Incontinence in the elderly is the primary reason for nursing home
admissions, an already significant social and economic burden in our
aging population. In 2002, IFFGD sponsored a consensus conference
entitled, Advancing the Treatment of Fecal and Urinary Incontinence
Through Research: Trial Design, Outcome Measures, and Research
Priorities. IFFGD also collaborated with NIH on the NIH State-of-the-
Science Conference on the Prevention of Fecal and Urinary Incontinence
in Adults in 2007.
NIDDK recently launched a Bowel Control Awareness Campaign (BCAC)
that provides resources for healthcare providers, information about
clinical trials, and advice for individuals suffering from bowel
control issues. The BCAC is an important step in reaching out to
patients, and we encourage continued support for this campaign. Further
research on fecal incontinence is critical to improve patient quality
of life and implement the research goals of the NCDD.
GASTROESOPHAGEAL REFLUX DISEASE (GERD)
GERD is a common disorder which results from the back-flow of
stomach contents into the esophagus. GERD is often accompanied by
chronic heartburn and acid regurgitation, but sometimes the presence of
GERD is only revealed when dangerous complications become evident.
There are treatment options available, but they are not always
effective and may lead to serious side effects. Gastroesophageal reflux
(GER) affects as many as one-third of all full term infants born in
America each year and even more premature infants. GER results from
immature upper gastrointestinal motor development. Up to 8 percent of
children and adolescents will have GER or GERD due to lower esophageal
sphincter dysfunction and may require long-term treatment.
GASTROPARESIS
Gastroparesis, or delayed gastric emptying, refers to a stomach
that empties slowly. Gastroparesis is characterized by symptoms from
the delayed emptying of food, namely: bloating, nausea, vomiting, or
feeling full after eating only a small amount of food. Gastroparesis
can occur as a result of several conditions, and is present in 30
percent to 50 percent of patients with diabetes mellitus. A person with
diabetic gastroparesis may have episodes of high and low blood sugar
levels due to the unpredictable emptying of food from the stomach,
leading to diabetic complications. Other causes of gastroparesis
include Parkinson's disease and some medications. In many patients the
cause cannot be found and the disorder is termed idiopathic
gastroparesis.
CYCLIC VOMITING SYNDROME (CVS)
CVS is a disorder with recurrent episodes of severe nausea and
vomiting interspersed with symptom free periods. The periods of
intense, persistent nausea and vomiting, accompanied by abdominal pain,
prostration, and lethargy, last hours to days. Previously thought to
occur primarily in pediatric populations, it is increasingly understood
that this crippling syndrome can occur in many age groups, including
adults. CVS patients often go for years without correct diagnosis. CVS
leads to significant time lost from school and from work, as well as
substantial medical morbidity. The cause of CVS is not known. Research
is needed to help identify at-risk individuals and develop more
effective treatment strategies.
SUPPORT FOR CRITICAL RESEARCH
IFFGD urges Congress to fund the NIH at level of $32 billion for
fiscal year 2014.--Strengthening and preserving our Nation's biomedical
research enterprise fosters economic growth and supports innovations
that enhance the health and well-being of the Nation. Concurrent with
overall NIH funding, IFFGD supports the growth of research activities
on FGIMDs to strengthen the medical knowledge base and improve
treatment, particularly through the National Institute of Diabetes and
Digestive and Kidney Diseases (NIDDK). Such support would expedite the
implementation of recommendations from the NCDD. It is also vital for
NIDDK to work with the National Institute of Child Health and Human
Development (NICHD) to expand its research on the impact FGIMDs have on
pediatric populations. Following years of near level-funding, research
has been negatively impacted across all NIH Institutes and Centers.
Without additional funding, medical researchers run the risk of losing
promising research opportunities that could benefit patients.
We applaud the recent establishment of the National Center for
Advancing Translational Sciences (NCATS) at NIH. Initiatives like the
Cures Acceleration Network are critical to overhauling the
translational research process and overcoming the challenges that
plague treatment development. In addition, new efforts like taking the
lead on drug repurposement hold the potential to speed new treatment to
patients. We ask that you support NCATS and provide adequate resources
for the Center in fiscal year 2014.
Thank you for the opportunity to present these views on behalf of
the FGIMD community.
______
Prepared Statement of the Interstitial Cystitis Association
SUMMARY OF RECOMMENDATIONS FOR FISCAL YEAR 2014
_______________________________________________________________________
--$660,000 for the IC Education and Awareness Program at the Centers
for Disease Control and Prevention.
--$32 billion for the National Institutes of Heatlh (NIH) and
Proportional Increases Across All Institutes and Centers.
--Support for NIH Research on IC, including:
--The Multidisciplinary Approach to the Study of Chronic Pelvic
Pain (MAPP) Research Network.
--Research on IC in Children.
_______________________________________________________________________
Thank you for the opportunity to present the views of the
Interstitial Cystitis Association (ICA) regarding the importance of
interstitial cystitis (IC) public awareness and research.
ICA was founded in 1984 and remains the only nonprofit organization
dedicated to improving the lives of those affected by IC. The
Association provides an important avenue for advocacy, research, and
education relating to this painful condition. Since its founding, ICA
has acted as a voice for those living with IC, enabling support groups
and empowering patients. ICA advocates for the expansion of the IC
knowledge-base and the development of new treatments, including
investigator initiated research. Finally, ICA works to educate
patients, healthcare providers, and the public at large about IC.
IC is a condition that consists of recurring pelvic pain, pressure,
or discomfort in the bladder and pelvic region. It is often associated
with urinary frequency and urgency. This condition may also be referred
to as painful bladder syndrome (PBS), bladder pain syndrome (BPS), and
chronic pelvic pain (CPP). It is estimated that as many as 12 million
Americans have IC symptoms. Approximately two-thirds of these patients
are women, though this condition does severely impact the lives of as
many as 4 million men as well. IC has been seen in children and many
adults with IC report having experienced urinary problems during
childhood. However, little is known about IC in children, and
information on statistics, diagnostic tools and treatments specific to
children with IC are limited.
The exact cause of IC is unknown and there are few treatment
options available. There is no diagnostic test for IC and diagnosis is
made only after excluding other urinary/bladder conditions. It is not
uncommon for patients to experience one or more years delay between the
onset of symptoms and a diagnosis of IC. This is exacerbated when
healthcare providers are not properly educated about IC and some
patients suffer many years before they are diagnosed and empowered to
attempt potential therapies.
The effects of IC are pervasive and insidious, damaging work life,
psychological well-being, personal relationships, and general health.
The impact of IC on quality of life is equally as severe as rheumatoid
arthritis and end-stage renal disease. Health-related quality of life
in women with IC is worse than in women with endometriosis, vulvodynia,
and overactive bladder. IC patients have significantly more sleep
dysfunction, and higher rates of depression, anxiety, and sexual
dysfunction.
Some studies suggest that certain conditions occur more commonly in
people with IC than in the general population. These conditions include
allergies, irritable bowel syndrome, endometriosis, vulvodynia,
fibromyalgia, and migraine headaches. Chronic fatigue syndrome, pelvic
floor dysfunction, and Sjogren's syndrome have also been reported.
IC PUBLIC AWARENESS AND EDUCATION
The IC Education and Awareness Program at the Centers for Disease
Control and Prevention (CDC) is critical to improving public and
provider awareness of this devastating disease, reducing the time to
diagnosis for patients, and disseminating information on pain
management and IC treatment options.
The IC program has utilized opportunities with charitable
organizations to leverage funds and maximize public outreach. Such
outreach includes public service announcements in major markets and the
Internet, as well as a billboard campaign along major highways across
the country. The IC program has also made information on IC available
to patients and the public though videos, booklets, publications,
presentations, educational kits, websites, self-management tools,
webinars, blogs, and social media communities such as Facebook,
YouTube, and Twitter. For healthcare providers, this program has
included the development of a continuing medical education module,
targeted mailings, and exhibits at national medical conferences.
The CDC IC Education and Awareness Program also provides patient
support that empowers patients to self-advocate for their care. Many
physicians are hesitant to treat IC patients because of the time it
takes to treat the condition and the lack of answers available.
Further, IC patients may try numerous potential therapies, including
alternative and complementary medicine, before finding an approach that
works for them. For this reason, it is especially critical for the IC
program to provide patients with information about what they can do to
manage this painful condition and lead a normal life.
ICA recommends continued support for the CDC IC Education and
Awareness Program and a specific appropriation of $660,000 for fiscal
year 2014. ICA also encourages continued support for the National
Center for Chronic Disease Prevention and Health Promotion which
administers the IC program.
RESEARCH THROUGH THE NATIONAL INSTITUTES OF HEALTH
The National Institutes of Health (NIH) maintains a robust research
portfolio on IC. The National Institute of Diabetes and Digestive and
Kidney Diseases (NIDDK) is the primary Institute for IC research. Major
studies that have yielded significant new information include the RAND
IC Epidemiology (RICE) studies which found that nearly 2.7-6.7 percent
of adult women and 2 to 4 million men have symptoms consistent with IC.
The IC Genetic Twin study found environmental factors, rather than
genetic factors, to be substantial risk factors for developing IC. The
Events Preceding Interstitial Cystitis (EPIC) study linked non-bladder
conditions and infectious agents to the development of IC in many
newly-diagnosed IC patients. The findings of the EPIC study have been
reinforced by a Northwestern University study which found that an
unusual form of toxic bacterial molecule (LPS) impacts the development
of IC as a result of an infectious agent. Finally, the Urologic Pelvic
Pain Collaborative Research Network (UPPCRN) indicated promising
results for a new therapy for IC patients.
Research currently underway also holds great promise to improving
our understanding of IC and developing better treatments and a cure.
The NIDDK Multidisciplinary Approach to the Study of Chronic Pelvic
Pain (MAPP) Research Network studies the underlying causes of chronic
urological pain syndromes. The Specialized Centers of Research on Sex
and Gender Factors Affecting Women's Health established by the Office
of Research on Women's Health (ORWH) includes an IC component. Research
on chronic pelvic pain is supported by the National Institute of
Neurological Disorders and Stroke (NINDS) as well as the National
Center for Complementary and Alternative Medicine (NCCAM).
Additionally, the NIH investigator-initiated research portfolio
continues to be an important mechanism for IC researchers to create new
avenues for interdisciplinary research.
ICA also supports the National Center for Advancing Translational
Sciences (NCATS), including the Cures Acceleration Network (CAN).
Initiatives like CAN are critical to overhauling the translational
research process and overcoming the research ``valley of death'' that
currently plagues treatment development. In addition, drug
repurposement and other efforts led by NCATS hold the potential to
speed access to new treatment for patients. ICA encourages support for
NCATS and the provision of adequate resources for the Center in fiscal
year 2014.
ICA recommends a funding level of $32 billion for NIH in fiscal
year 2014. ICA also recommends continued support the MAPP study
administered by NIDDK, and the expansion of research focused on IC in
children.
Thank you for the opportunity to present the views of the
interstitial cystitis community.
______
Prepared Statement of the Joint Advocacy Coalition (JAC)
JAC Fiscal Year 2014 LHHS Appropriations Recommendations
--Protect clinical and translational research and research training
programs from devastating funding cuts due to sequestration and
deficit reduction initiatives.
--Provide $32 billion for NIH, an increase of $1.3 billion over
fiscal year 2012.
--Provide $434 million for AHRQ, an increase of $29 million over
fiscal year 2012, and meaningful funding increases for related
agencies that support patient-centered and comparative
effectiveness research.
--Provide $7 billion for the Health Resources and Services
Administration (HRSA), an increase of $789 million from fiscal
year 2012, and meaningful funding increase for related agencies
that support clinical and translational research, including
research into the health system and healthcare delivery.
--Provide continued support for Federal research training and career
development activities such as the ``K'' and ``T'' awards
programs.
Chairman Harkin, Ranking Member Moran, and distinguished members of
the subcommittee, thank you for the opportunity to submit written
testimony on behalf of JAC.
The JAC
JAC is comprised of organizations representing the clinical and
translational research and research training community, and is led by
the Association for Clinical and Translational Science and Clinical
Research Forum. These organizations are dedicated to improving the
health of the public through clinical and translational research and to
supporting this Nation's research training and career development
pipeline. JAC speaks with one voice on behalf of this community to
advocate for adequate funding of clinical and translational research
and research training programs at NIH, AHRQ, and related Federal
agencies, and the Patient-Centered Outcomes Research Institute (PCORI).
Deficit Reduction and Sequestration
Our Nation's investment in the full spectrum of biomedical research
from molecules to populations is an engine that drives economic growth
while improving health outcomes for patients with chronic, costly, and
life-threatening conditions. Research projects funded through NIH,
AHRQ, HRSA, and related agencies are conducted at academic health
centers, community hospitals, and other local settings across the
country. federally-supported clinical and translational research
activities have a major economic impact on local communities, which
includes high-quality job creation, in addition to forming a
cornerstone of this Nation's biotechnology industry. Translational
research embraces and connects the two poles of biomedical research,
from bench to bedside and from clinical trials to broad application in
the population. Cutting funding to NIH, AHRQ, HRSA, and related
programs would have direct and immediate negative consequences for the
local communities that support clinical and translational research
activities.
Equally troubling and problematic is the message that funding cuts
to biomedical research send to the next generation of young scientists.
Medical research activities are not a faucet that can simply be turned
off and on with funding. When funding begins to dry up, our best and
brightest are faced with a strong disincentive to pursue a career in
this field. It is difficult to justify a long and demanding period of
training when a young investigator has slim chances of securing a
Federal grant to support their research. Currently, NIH cannot fund
many promising meritorious grant submissions and only funds less than
10 percent of all grant applications. Further, the average age for a
researcher to receive their first grant is presently 42. If funding is
cut further, the ``pay line'' at which funding is possible will
continue to drop and the average age for securing a grant will rise.
Compounding this situation is a very real threat to losing top research
talent posed by biotechnology investments being made by several other
countries. China alone plans to dedicate $300 billion to medical
research over the next 5 years; this amount is double the current NIH
budget over the same period of time. Research is not beholden to
language or culture and young investigators will gravitate towards any
country that has the resources to support their promising research.
Unless we provide a meaningful investment in clinical and translational
research training programs over the coming years, our loss will be our
competitors' gain. We will concede innovation in healthcare delivery
and cutting-edge therapies to foreign biotech industries.
Most importantly, cutting funding to clinical and translational
research programs will delay and jeopardize healthcare advances that
would benefit patients dealing with serious and life-threatening
medical conditions and cut healthcare costs. Research leading to new
therapies and how these new therapies can be used in evidence-based
medical care is essential to controlling healthcare costs. Prevention
through interventions like new vaccines has been demonstrated to save
healthcare costs. Federal programs focused on developing personalized
medicine and patient-focused care are only just beginning to be
implemented. If these programs are forced to confront reduced resources
in their infancy, they may never be able to achieve their potential or
accomplish their missions. A loss of funding for NIH, AHRQ, HRSA, and
related agencies would seriously undermine the ongoing effort to bring
this country's healthcare system in to the 21st century. Setbacks in
this area would be felt by members of every community; since neither
industry nor hospitals support these critical components of research
that lead to new drugs, vaccines, devices, and diagnostics.
Support for Clinical and Translational Research Activities
With the establishment of the Clinical and Translational Science
Awards (CTSA) program in 2006, NIH began a commitment to supporting the
full spectrum of research to bridge the ``valley of death'' between
basic scientific discoveries and bedside therapies, diagnostic tools,
and practices. In 2011, the CTSA Consortium reached its planned size of
approximately 60 medical research institutions located in 30 States
throughout the Nation, linking them together to energize the discipline
of clinical and translational science. The CTSAs have an explicit goal
of improving healthcare in the United States by transforming the
biomedical research enterprise to become more effectively
translational.
Although the promise of the CTSA program is recognized both
nationally and internationally, it has suffered from a lack of adequate
funding. In 2006, 16 initial CTSAs were funded, followed by 12 in 2007,
14 in 2008, 4 in 2009, 9 in 2010, and 5 in 2011. Level funding at NIH
curtailed the growth of the CTSAs, preventing institutions from fully
implementing their awards and causing them to drastically alter their
budgets after research had already begun. As a testament to the
strength of the concept, the CTSA program continues to generate
significant scientific progress with limited resources. With full
funding, the CTSA program could be even more successful and productive.
While the Nation could benefit from additional CTSAs in the future, the
current sites are having an enormous impact, so any attempt to provide
full funding should not curtail the current number of sites or limit
the geographic diversity of the program.
Prevention science and comparative effectiveness research (CER) are
new approaches to evaluate the impact of different options that are
available for preventing or treating a given medical condition for a
particular set of patients. These can include medications, lifestyle
therapies, and medical devices, among other interventions. Both AHRQ
and NIH have long histories of supporting CER and prevention research,
and the standards for research instituted by these agencies serve as
models for best practices worldwide. Not only are these agencies
experienced in CER, they are universally recognized as impartial and
honest brokers of information. Moreover, their approach enables and
does not duplicate the approach of PCORI. Continued support is critical
to ensuring that patients benefit from the best information for them
and their doctors to make healthcare decisions.
Support for Research Training and Career Development Programs
The future of our Nation's biomedical research enterprise relies
heavily on the maintenance and continued recruitment of promising young
investigators. The ``T'' and ``K'' series awards at NIH and AHRQ
provide much-needed support for the career development of young
investigators. These programs are efficient because they provide
training to small groups and not individual trainees. As clinical and
translational medicine takes on increasing importance, there is a great
need to grow these programs, not to reduce them. Career development
grants are crucial to the recruitment of promising young investigators,
as well as to the continuing education of established investigators.
Reduced commitment to the K-12, K-23, K-24, and K-30 awards would have
a devastating impact on our pool of highly trained clinical
researchers. Even with the full implementation of the CTSA program, it
is critical for institutions without CTSAs to retain their K-30
Clinical Research Curriculum Awards, as the K-30s remain a highly cost-
effective method of ensuring quality clinical research training. The
JAC urges you to support the ongoing commitment to research training
through adequate funding for T and K series awards.
Thank you for the opportunity to present the views and
recommendations of the clinical research training community. Please
contact JAC if you have any questions or if you would like any
additional information.
______
Prepared Statement of the Lung Cancer Alliance
Lung Cancer Alliance is grateful for the opportunity to share our
views on the pending fiscal year 2014 Appropriations and the potential
impact on the operation of the U.S. Preventive Services Task Force
(USPSTF) and the Agency for Healthcare Research and Quality (AHRQ)
within the Department of Health and Human Services (HHS).
Lung Cancer is the leading cause of cancer death in the United
States. Nearly one third of all cancer deaths in the U.S. are lung
cancer deaths. Each year, 160,000 lives are lost to lung cancer. Sixty
percent of the people diagnosed with lung cancer today are former
smokers who heeded the call to quit. Over 75 percent of lung cancers
are diagnosed at late stage when treatment options are limited,
expensive and sadly, often futile. This can change.
In November 2010, the National Cancer Institute (NCI) announced it
was terminating the largest, most expensive randomized control trial in
its history because the trial demonstrated conclusively--sooner than
expected--that screening those at high risk for lung cancer with CT
scans could greatly reduce lung cancer deaths. The National Lung
Screening Trial (NLST) compared low dose CT screening to x-rays for the
detection of lung cancer in people over 55 with a significant smoking
history and found that low dose CT screening provided a 20 percent
mortality benefit. To put this into context, the overall mortality
benefit for mammography is 15 percent. These are substantial mortality
benefits and for a cancer as widespread and impactful as lung cancer,
it means that tens of thousands of lives could be saved each year if
lung cancer screening is deployed responsibly and equitably.
Despite this conclusive scientific evidence and subsequent
published and peer reviewed studies that show low dose CT screening is
cost effective from a commercial payers perspective, to date, USPSTF
has failed to make a recommendation. This failure to make a
recommendation has literally been the difference between life and death
for those who continue to be diagnosed for lung cancer at late stage.
We have profound concerns about the operation of the U.S.
Preventive Services Task Force in this era of expanded authority under
the Affordable Care Act (ACA). Because of the ACA, USPSTF now not only
determines what benefits will be covered by Medicare and Medicaid but
also what services will be considered an Essential Health Benefit for
coverage in State and Federal health care exchanges. Preventive
Services receiving less than an A or B recommendation are not required
to be covered by the commercial health plans offered through these
exchanges.
The ACA is replete with references to transparency in the operation
of exchanges and other provisions, but silent in this regard with
respect to USPSTF. Initially, and in anticipation of an escalation in
the number of concerns already being expressed by some members of
Congress, USPSTF announced in 2011 a new initiative to ``make its
recommendations clearer and its processes more transparent.''
With lung cancer screening under review at the time, Lung Cancer
Alliance was asked to participate in the pilot project, which included
the first ``Topic Groups for Stakeholders'' (TOPS), a key component of
the new openness that USPSTF described as an effort to make its work
``more transparent and trustworthy.'' As you can imagine, Lung Cancer
Alliance immediately agreed to participate. Unfortunately, since that
first and only call on November 10, 2011, there has been no additional
actions or activities. Despite repeated requests, Lung Cancer Alliance
has not been given any information regarding the other members of the
lung cancer TOPS, the final research plan, the reviewers who were
selected, how they were selected or the timeline for draft
recommendations. We have not even been told who else was on the one
TOPS call.
While the lack of transparency is deeply disappointing and
inexplicable, the lethargic pace of USPSTF in reviewing CT screening is
having tragic consequences in lives lost. On average, 435 people a day
die of lung cancer. If screening is implemented right and well, 200
people a day could be saved. Thus, tens of thousands of lives a year
are at stake. Studies by Milliman Inc. have also validated its cost
efficiency.
Yet, as it now stands, since lung cancer screening has not yet
received an A or B recommendation, CT lung cancer screening for those
at high risk will not be covered under Medicare, Medicare or included
as an Essential Health Benefit for insurance purchased through the
exchanges.
For many of those at high risk, unless action is taken by Congress,
this unfortunate convergence of bureaucratic delays and the arbitrary
deadline in inclusion under the Affordable Care Act will be a de facto
of denial of access to this life saving, cost efficient benefit.
We urge the Committee to direct the Secretary of Health and Human
Services to include CT screening of those at high risk for lung cancer
as an Essential Health Benefit and as a covered benefit under Medicare
and Medicaid.
______
Prepared Statement of the March of Dimes Foundation
MARCH OF DIMES: FISCAL YEAR 2014 FEDERAL FUNDING PRIORITIES
[Dollars in thousands]
------------------------------------------------------------------------
Fiscal Year
Program 2014
Request
------------------------------------------------------------------------
National Institutes of Health (Total)...................... 32,000,000
------------------------------------------------------------------------
National Children's Study.................................. 192,000
Common Fund................................................ 570,530
National Institute of Child Health and Development......... 1,370,000
National Human Genome Research Institute................... 536,967
National Institute on Minority Health and Disparities...... 289,426
------------------------------------------------------------------------
Centers for Disease Control and Prevention (Total)......... 7,800,000
------------------------------------------------------------------------
National Center for Birth Defects and Developmental 139,000
Disabilities..............................................
Birth Defects Research and Surveillance................ 22,300
Folic Acid Campaign.................................... 2,800
Section 317................................................ 720,000
Polio Eradication.......................................... 126,400
Safe Motherhood Initiative................................. 44,000
Preterm Birth.......................................... 2,000
National Center for Health Statistics...................... 162,000
------------------------------------------------------------------------
Health Resources and Services Administration (Total)....... 7,000,000
------------------------------------------------------------------------
Title V, Maternal and Child Health Block Grant............. 640,000
SPRANS--Infant Mortality and Preterm Birth............. 3,000
Heritable Disorders........................................ 13,300
Universal Newborn Hearing.................................. 18,660
Community Health Centers................................... 1,580,000
Healthy Start.............................................. 103,532
Children's Graduate Medical Education...................... 317,500
------------------------------------------------------------------------
Agency for Healthcare Research and Quality (Total)......... 430,000
------------------------------------------------------------------------
The three million volunteers and 1,200 staff members of the March
of Dimes Foundation appreciate the opportunity to submit Federal
funding recommendations for fiscal year 2014 (fiscal year 2014). The
March of Dimes is a unique partnership of scientists, clinicians,
parents, members of the business community and other volunteers
affiliated with 51 chapters and 213 divisions in every State, the
District of Columbia and Puerto Rico. The March of Dimes recommends the
following funding levels for programs and initiatives that are
essential investments in maternal and child health.
Preterm Birth
Preterm birth is a serious health problem that costs the United
States more than $26 billion annually. Employers, private insurers and
individuals bear approximately half of the costs of health care for
these infants, and another 40 percent is paid by Medicaid. One in nine
infants in the U.S. is born preterm. Prematurity is the leading cause
of newborn mortality and the second leading cause of infant mortality.
Among those who survive, one in five faces health problems that persist
for life such as cerebral palsy, intellectual disabilities, chronic
lung disease, and deafness. In 2011, the Nation's preterm birth dropped
for the fifth consecutive year to 11.7 percent, giving thousands more
infants a healthy start in life and saving billions in health and
social costs. We believe one of the factors behind the decline was
Congress's passage of the 2006 PREEMIE Act (Public Law 109-450), which
brought the first-ever national focus to prematurity prevention. The
Surgeon General's Conference on the Prevention of Preterm Birth created
by the Act generated a public-private agenda to spur innovative
research at the National Institutes of Health (NIH) and Centers for
Disease Control and Prevention (CDC) and advanced evidence-based
interventions to prevent preterm birth. The March of Dimes' fiscal year
2014 funding requests regarding preterm birth are based on the
recommendations from 2008 conference and the PREEMIE Act.
National Children's Study (NCS)
The March of Dimes recommends $192 million in fiscal year 2014 for
the National Children's Study to allow for roll-out of the main study
with a science-based design and recruitment strategy. The NCS is the
largest and most comprehensive study of children's health and
development ever planned in the U.S. When fully implemented, this study
will follow 100,000 children in the U.S. from before birth until age
21. The data has the potential to transform our understanding of child
health and development, and to lead to new forms of prevention and
treatment for a multitude of conditions and diseases of childhood.
Eunice Kennedy Shriver National Institute of Child Health and Human
Development (NICHD)
The March of Dimes recommends at least $1,370 million for the NICHD
in fiscal year 2014. This funding will allow NICHD to sustain its
preterm birth-related research through extramural grants, Maternal-
Fetal Medicine Units, the Neonatal Research Network and the intramural
research program. This funding would also allow for NICHD to invest in
transdisciplinary research to identify the causes of preterm birth, as
recommended in the Director's 2012 Scientific Vision for the next
decade, the Institute of Medicine 2006 report on preterm birth, and the
2008 Surgeon General's Conference on the Prevention of Preterm Birth.
The March of Dimes fully supports NICHD's pursuit of transdisiplinary
science, which will facilitate the exchange of scientific ideas and
lead to novel approaches to understanding complex health issues and
their prevention.
Centers for Disease Control and Prevention--Preterm Birth
The mission of the CDC's National Center for Chronic Disease
Prevention and Health Promotion's Safe Motherhood Initiative is to
promote optimal reproductive and infant health. The March of Dimes
recommends funding of $44 million for the Safe Motherhood program and
re-instatement of the preterm birth sub-line at $2 million, as
authorized in the PREEMIE Act, to reflect current preterm birth
research within the CDC.
Health Resources and Services Administration (HRSA)--Preterm Birth
The March of Dimes recommends the subcommittee specify $3 million
within the Title V, Special Projects of Regional and National
Significance account be used to support current preterm birth and
infant mortality initiatives, as authorized in the PREEMIE Act, and to
support the expansion of its initiatives nationwide. The PREEMIE Act
authorized preterm birth-related demonstration projects, which are
aimed at improving education, treatment and outcomes for babies born
preterm. Currently, HRSA is pursuing the Collaborative Improvement &
Innovation Network (COIN) to Reduce Infant Mortality, which brings
together infant mortality experts to share best practices and lessons
learned. Through the COIN, State agencies are focusing on a range of
interventions proven to reduce preterm birth and improve maternal and
child health, including reducing elective deliveries before 39 weeks
and implementing evidence-based smoking cessation initiatives.
Expanding the COIN initiative nationwide will reduce preterm birth
rates and infant mortality.
Birth Defects
According to the CDC, an estimated 120,000 infants in the U.S. are
born with major structural birth defects each year. Birth defects are
the leading cause of infant mortality and the causes of more than 70
percent are unknown. Additional Federal resources are sorely needed to
support research to discover the causes of all birth defects and for
the development of effective interventions to prevent or at least
reduce their prevalence.
CDC--National Center on Birth Defects and Developmental Disabilities
(NCBDDD)
For fiscal year 2014, the March of Dimes requests funding of $139
million for NCBDDD. We also encourage the subcommittee to provide at
least $2.8 million to support folic acid education and $22.3 million to
support birth defects research and surveillance--a $2 million increase
from fiscal year 2012 enacted levels. Allocating an additional $2
million to birth defects research and surveillance will support genetic
analysis of the research samples already obtained through the NCBDDD's
National Birth Defects Prevention Study--the largest case-controlled
study of birth defects ever conducted. Further, allocating at least $2
million to folic acid education will allow the CDC to sustain its
effective education campaign aimed at reducing the incidence of spina
bifida and anencephaly by promoting consumption of folic acid.
Newborn Screening
Newborn screening is a vital public health activity designed to
identify genetic, metabolic, hormonal and functional disorders in
newborns. Screening detects conditions in newborns that, if left
untreated, can cause disability, developmental delays, intellectual
disabilities, serious illnesses or even death. If diagnosed early, many
of these disorders can be managed successfully. The March of Dimes
urges the subcommittee to provide $13.3 million for HRSA's heritable
disorders program and the work of the Advisory Committee on Heritable
Disorders in Newborns and Children, as authorized by the Newborn
Screening Saves Lives Act (Public Law 110-204). In 2013, the United
States will mark the 50th anniversary of newborn screening. The
Heritable Disorders program plays a critical role in assisting States
in the adoption of additional screenings, enhancing provider and
consumer education and ensuring coordinated follow-up care.
Closing
The Foundation's volunteers and staff in every State, the District
of Columbia and Puerto Rico look forward to working with Members of
this subcommittee to secure the resources needed to improve the health
of the Nation's mothers, infants and children.
______
Prepared Statement of the Meals On Wheels Association of America
Thank you for the opportunity to present testimony to your
subcommittee concerning fiscal year 2014 funding for Older Americans
Act (OAA) Nutrition Programs administered by the Administration for
Community Living (ACL)/Administration on Aging (AoA) within the U.S.
Department of Health and Human Services (HHS). I am Ellie Hollander,
President and CEO of the Meals On Wheels Association of America. As you
may know, we are the oldest and largest national organization
representing local, community-based Senior Nutrition Programs--both
congregate and home-delivered (commonly referred to as Meals on
Wheels)--in all 50 States and Territories. As a national organization
and network, we are working together to end senior hunger in America by
2020.
Every day, thousands of Senior Nutrition Programs in every State
provide nutritious meals and daily social contact to seniors 60 years
of age or older who are at significant risk of hunger and losing their
ability to remain independent in their own homes and communities. More
than 70 percent of the Members of our Association provide both types of
meals authorized under the OAA--nutritious meals served in congregate
locations such as senior centers, as well those served directly to the
residences of homebound seniors. Today, I speak on behalf not only of
the national network of Senior Nutrition Programs and for the hundreds
of thousands of seniors nationwide who rely on these programs for their
primary source of nutritious food. But I also speak for millions of
other seniors who need meals but are not able to receive them--not
because we lack the infrastructure and expertise to serve them but
because there are not adequate financial resources to do so.
One of the great strengths of Senior Nutrition Programs for which
we are truly proud, is that they are strong public-private
partnerships. Not only do these programs engage volunteers from the
community, they raise significant private funds in their communities to
augment the limited Federal funds furnished through the annual Labor,
Health and Human Services, Education and Related Agencies appropriation
bills. Nationally, about 30 percent of the total spending for
congregate and home-delivered meals is provided through Older Americans
Act funding. The rest must be raised from State and local sources as
well as private donations. However, in recent years, it has proven more
and more difficult to leverage funding from these other sources. Year
after year, Senior Nutrition Programs are serving fewer seniors and
meals at a time when the need and demand is growing at an unprecedented
pace.
Currently, Senior Nutrition Programs face ongoing challenges,
including:
--Sequestration;
--Year-over-year Federal, State and local budget cuts;
--Rising costs for food, transportation and employees;
--Fewer and smaller private donations due to the slow economy;
--Increased demand, as Baby Boomers turn 65 at the rate of 10,000 a
day;
--Increased need, with 8.3 million seniors--or 1 in 7--struggling
with hunger today.
Data relating to utilization of OAA Senior Nutrition Programs
illustrate how these compounding factors have already reduced the
number of meals being served. For example, in 2011, OAA Nutrition
Programs served 14 million fewer meals as compared to 2010. Despite the
increasing need due to demographics and economic conditions, 88,000
fewer seniors were able to be served across the United States in 2011
as compared to the previous year.
Yet another example of these compounding effects is outlined in the
President's fiscal year 2014 Budget, which proposes continued funding
for OAA Nutrition Programs for another fiscal year at the fiscal year
2012 level. According to ACL's Congressional Budget Justification, the
request for OAA Nutrition Programs--$816 million--is estimated to
support the provision of 214 million meals for 2.3 million seniors.
This represents nearly a 14 million meal reductions from 2011 and
nearly 28 million fewer meals from 2010. In terms of the decreases in
the number of individuals able to be served, it is about 100,000 per
year--in 2011, 2.5 million seniors were served; and in 2010, that
number was 2.6 million.
Clearly, these compounding factors were already causing reductions
in meals and the number of seniors served, even before the automatic
cuts were ordered on March 1 of this year. While the specific impact of
sequestration is not yet quantifiable, it will be devastating to Senior
Nutrition Programs, and in turn devastating, perhaps even life
threatening to frail older Americans who rely on them as their only
source of nutritious food. As a result of sequestration and the
aforementioned challenges, Senior Nutrition Programs have been forced
to further reduce meals, cut delivery days, and establish waiting
lists, leaving so many of our hidden hungry without the nutrition they
need to remain healthy and out of more costly healthcare settings, such
as hospitals or nursing homes.
Given these facts, we appeal to this subcommittee to provide
increases above the President's request for Title III C1 (Congregate
Meals), Title III C2 (Home-Delivered Meals) and Nutrition Services
Incentive Program (NSIP) of the OAA. We ask this knowing that the
fiscal context in which you are working for this fiscal year 2014
appropriation bill is extraordinarily challenging and knowing that
providing increases to our programs likely means reducing or
eliminating others. However, we believe that investing in OAA Nutrition
Programs is not only morally right, but that there is a strong business
and economic case that demonstrates that spending on these programs
actually helps to save taxpayers' dollars.
Specifically, research released from Brown University in December
2012, demonstrates the positive impact of increased spending on home-
delivered meals programs for seniors. The study compared State-level
expenditures on OAA programs with the population of ``low-care''
seniors in nursing homes (i.e., residents of nursing homes that might
not need the suite of services that a nursing home provides). According
to the analysis from a decade of spending and nursing home resident
data, those States that invest more in home-delivered meals to seniors
have lower rates of ``low-care'' seniors in nursing homes. Home-
delivered meals emerged as the most significant factor among OAA
services that affected State-to-State differences in low-care nursing
home population. The research found that for every $25 per year per
older adult above the national average that States spend on home-
delivered meals, they could reduce their percentage of low-care nursing
home residents by one percentage point compared to the national
average. As you know, a 1 percent reduction in Medicare and Medicaid
expenditures can result in significant savings.
At a time when Federal and State budgets are looking for ways to
reduce costs, the impact of an investment in home-delivered meal
programs, such as Meals on Wheels, can reap tremendous benefits for
both the seniors that receive them and the communities that often bear
the costs of supporting our seniors. Previous studies have suggested
that anywhere from 5 to 30 percent of nursing home residents have low-
care needs and could perhaps be better served in their homes.
Additionally, the Center for Effective Government (formerly OMB
Watch) released a study on April 30, 2013, that demonstrates the
potentially devastating impact sequestration could have not only on
Meals on Wheels programs and the seniors they serve, but on our
Nation's budget. The report estimated that 39,000 seniors nationwide
could, as a result of sequestration's reduction in OAA Home-Delivered
Nutrition funding, be forced into nursing homes rather than relying on
a combination of home care and home-delivered meals. The shift in
living arrangements could cost taxpayers an estimated $489 million per
year in increased Medicaid costs.
Providing adequate funds above fiscal year 2012 levels for Senior
Nutrition Programs can only be regarded as a strong and demonstrable
value proposition. The more local, community-based Senior Nutrition
Programs are able to keep seniors well-nourished and in their own homes
where they want to be, the less the Federal Government will need to
spend on long-term care, on doctor visits, and stays in the hospital
funded by Medicare and Medicaid. The return on investment of each
taxpayer dollar spent on OAA Nutrition Programs is high. In fact, a
Senior Nutrition Program can provide meals to a senior for a whole year
for approximately the same cost of care for just one day in the
hospital or six days in a nursing home.
In closing, I would like to thank this subcommittee again for its
longstanding support and acknowledge that our Association understands
the difficulty of your task in this challenging budget year. As you
consider our request, we respectfully ask that you think of Senior
Nutrition Programs not simply as one of the hundreds of programs
supported through the Labor, Health and Human Services, Education and
Related Agencies appropriations bill, but instead as a high-reward
investment--morally and economically--and as a means of helping to
reduce our Federal spending by avoiding higher Medicare and Medicaid
expenditures.
Again, we thank you for the opportunity to present this testimony
to you.
______
Prepared Statement of the Medical Library Association and Association
of Academic Health Sciences Libraries
SUMMARY OF FISCAL YEAR 2014 RECOMMENDATIONS
_______________________________________________________________________
--Continue the commitment to the National Library of Medicine (NLM)
by supporting the President's budget proposal which requests
$382,252,000, and an additional $8,200,000 from amounts under
Section 241 of the Public Health Service Act, for the National
Information Center on Health Services Research and Health Care
Technology.
--Continue to support the medical library community's role in NLM's
outreach, telemedicine, disaster preparedness, health
information technology initiatives, and health care reform
implementation.
_______________________________________________________________________
INTRODUCTION
The Medical Library Association (MLA) and Association of Academic
Health Sciences Libraries (AAHSL) thank the subcommittee for the
opportunity to submit testimony regarding fiscal year 2014
appropriations for the National Library of Medicine (NLM), an agency of
the National Institutes of Health (NIH). Working in partnership with
the NIH and other Federal agencies, NLM is the key link in the chain
that translates biomedical research into practice, making the results
of research readily available to all who need it.
NLM Leverages NIH Investments in Biomedical Research
In today's challenging budget environment, we recognize the
difficult decisions Congress faces as it seeks to improve our Nation's
fiscal stability. We thank the subcommittee for its long-standing
commitment to strengthening NLM's budget. While extramural funding
comprises the largest portion of funding for institutes within the NIH,
some eighty percent of NLM's budget supports intramural services and
programs. Intramural funding builds, sustains, and continually augments
NLM's suite of more than 200 databases which provide information access
to health professionals, researchers, educators, and the public. It
also supports all aspects of library operations and programs, including
the acquisition, organization, preservation, and dissemination of the
world's biomedical literature, no matter the medium.
In fiscal year 2014 and beyond, it is critical to continue
augmenting NLM's baseline budget to support expansion of its
information resources, services, and programs which collect, organize,
and make readily accessible rapidly expanding biomedical knowledge
resources and data. NLM maximizes the return on the investment in
research conducted by the NIH and other organizations. The Library
makes the results of biomedical information more accessible to
researchers, clinicians, business innovators, and the public, enabling
such data and information to be used more efficiently and effectively
to drive innovation and improve health. NLM is a leader in Big Data and
plays a critical role in accelerating nationwide deployment of health
information technology, including electronic health records (EHRs) by
leading the development, maintenance and dissemination of key standards
for health data interchange that are now required of certified EHRs.
NLM also contributes to Congressional priorities related to drug safety
through its efforts to expand its clinical trial registry and results
database in response to legislative requirements, and to the Nation's
ability to prepare for and respond to disasters.
Growing Demand for NLM's Basic Services
NLM delivers more than a trillion bytes of data to millions of
users daily that helps researchers advance scientific discovery and
accelerate its translation into new therapies; provides health
practitioners with information that improves medical care and lowers
its costs; and gives the public access to resources and tools that
promote wellness and disease prevention. Every day, medical librarians
across the Nation use NLM services to assist clinicians, students,
researchers, and the public in accessing information they need to save
lives and improve health. Without NLM, our Nation's medical libraries
would be unable to provide the quality information services that our
Nation's health professionals, educators, researchers and patients
increasingly need.
NLM's data repositories and online integrated services such as
GenBank, PubMed, and PubMed Central are revolutionizing medicine and
ushering in an era of personalized medicine in which care is based on
an individual's unique genetic profile. GenBank is the definitive
source of gene sequence information. PubMed, with more than 22 million
citations to the biomedical literature, is the world's most heavily
used source of bibliographic information. Approximately 760,000 new
citations were added in fiscal year 2012, and it was searched more than
2.2 billion times. PubMed Central is NLM's freely accessible digital
repository of full-text biomedical journal articles. On a typical
weekday more than 700,000 users download 1.4 million full-text
articles, including those submitted in compliance with the NIH Public
Access Policy.
As the world's largest and most comprehensive medical library,
NLM's traditional print and electronic collections continue to steadily
increase each year, standing at more than 11.4 million items--books,
journals, technical reports, manuscripts, microfilms, photographs and
images. By selecting, organizing and ensuring permanent access to
health sciences information in all formats, NLM ensures the
availability of this information for future generations, making it
accessible to all Americans, irrespective of geography or ability to
pay, and guaranteeing that citizens can make the best, most informed
decisions about their healthcare.
Encourage NLM Partnerships
NLM's outreach programs are essential to MLA and AAHSL membership
and to the profession. Through the National Network of Libraries of
Medicine (NN/LM), with over 6,000 members in communities nationwide,
these activities educate medical librarians, health professionals and
the general public about NLM's services and train them in the most
effective use of these services. The NN/LM promotes educational
outreach for public libraries, secondary schools, senior centers and
other consumer-based settings, and its emphasis on outreach to
underserved populations helps reduce health disparities among large
sections of the American public. NLM's ``Partners in Information
Access'' program improves access by local public health officials to
information which prevents, identifies and responds to public health
threats and ensures every public worker has electronic health
information services that protect the public's health.
NLM's MedlinePlus provides consumers with trusted, reliable health
information on more than 900 topics in English and Spanish. It has
become a top destination for those seeking information on the Internet,
attracting nearly 850,000 visitors daily. Other products and services
that benefit public health and wellness include the NIH MedlinePlus
Magazine and NIH MedlinePlus Salud, available in doctors' offices
nationwide, and NLM's MedlinePlus Connect--a utility which enables
clinical care organizations to implement specific links from their
electronic health records systems to patient education materials in
MedlinePlus.
MLA and AAHSL applaud the success of NLM's outreach initiatives,
and we look forward to continuing to work with NLM on these programs.
Emergency Preparedness and Response
Through its Disaster Information Management Research Center, NLM
collects and organizes disaster-related health information, ensures
effective use of libraries and librarians in disaster planning and
response, and develops information services to assist responders. NLM
responds to specific disasters worldwide with specialized information
resources appropriate to the need, including information on
bioterrorism, chemical emergencies, fires and wildfires, earthquakes,
tornadoes, and pandemic disease outbreaks. MLA and NLM continue to
develop the Disaster Information Specialization (DIS) program to build
the capacity of librarians and other interested professionals to
provide disaster-related health information outreach. Working with
libraries and U.S. publishers, NLM's Emergency Access Initiative makes
available free full-text articles from hundreds of biomedical journals
and reference books for use by medical teams responding to disasters.
MLA and AAHSL ask the subcommittee to support NLM's role in this
crucial area which ensures continuous access to health information and
use of libraries and librarians when disasters occur.
Health Information Technology and Bioinformatics
For more than 40 years, NLM has supported informatics research,
training and the application of advanced computing and informatics to
biomedical research and healthcare delivery including telemedicine
projects. Many of today's biomedical informatics leaders are graduates
of NLM-funded informatics research programs at universities nationwide.
A number of the country's exemplary electronic and personal health
record systems benefit from findings developed with NLM grant support.
The importance of NLM's work in health information technology
continues to grow as the Nation moves toward more interoperable health
information technology systems. A leader in supporting the development,
maintenance, and dissemination of standard clinical terminologies for
free nationwide use (e.g., SNOMED), NLM works closely with the Office
of the National Coordinator for Health Information Technology to
promote the adoption of interoperable electronic records, and has
developed tools to make it easier for EHR developers and users to
implement accepted health data standards in their systems.
MLA is a nonprofit, educational organization with 4,000 health
sciences information individual and institutional members. Founded in
1898, MLA provides lifelong educational opportunities, supports a
knowledge base of health information research, and works with a network
of partners to promote the importance of quality information for
improved health to the health care community and the public.
The Association of Academic Health Sciences Libraries (AAHSL)
supports academic health sciences libraries and directors in advancing
the patient care, research, education and community service missions of
academic health centers through visionary executive leadership and
expertise in health information, scholarly communication, and knowledge
management.
Thank you again for the opportunity to present our views. We look
forward to continuing this dialogue and supporting the subcommittee's
efforts to secure the highest possible funding level for NLM in fiscal
year 2014 and the years beyond to support the Library's mission and
growing responsibilities. Information about NLM and its programs can be
found at http://www.nlm.nih.gov.
______
Prepared Statement of the Meharry Medical College
SUMMARY OF FISCAL YEAR 2014 RECOMMENDATIONS
_______________________________________________________________________
1) Funding for the Title VII Health Professions Training Programs,
including:
-- $24.602 million for the Minority Centers of Excellence.
2) $32 billion for the National Institutes of Health and a
Proportional Increase for the National Institute on Minority Health and
Health Disparities.
-- Proportional funding increase for Research Centers for Minority
Institutions.
3) $65 million for the Department of Health and Human Services'
Office of Minority Health.
4) $65 million for the Department of Education's Strengthening
Historically Black Graduate Institutions Program.
_______________________________________________________________________
Mr. Chairman and members of the subcommittee, thank you for the
opportunity to present my views before you. I am Dr. Wayne J. Riley,
President and CEO of Meharry Medical College in Nashville, Tennessee. I
have previously served as vice-president and vice dean for health
affairs and governmental relations and associate professor of medicine
at Baylor College of Medicine in Houston, Texas and as assistant chief
of medicine and a practicing general internist at Houston's Ben Taub
General Hospital. In all of these roles, I have seen firsthand the
importance of minority health professions institutions and the Title
VII Health Professions Training programs.
Mr. Chairman, time and time again, you have encouraged your
colleagues and the rest of us to take a look at our Nation and evaluate
our needs over the next 10 years. First, I want to say that it is clear
that health disparities among various populations and across economic
status are rampant and overwhelming. Over the next 10 years, we will
need to be able to deliver more culturally relevant and culturally
competent healthcare services. Bringing healthcare delivery up to this
higher standard can serve as our Nation's own preventive healthcare
agenda keeping us well positioned for the future.
Minority health professional institutions and the Title VII Health
Professions Training programs address this critical national need.
Persistent and severe staffing shortages exist in a number of the
health professions, and chronic shortages exist for all of the health
professions in our Nation's most medically underserved communities. Our
Nation's health professions workforce does not accurately reflect the
racial composition of our population. For example, African Americans
represent approximately 15 percent of the U.S. population while only 2-
3 percent of the Nation's healthcare workforce is African American.
There is a well established link between health disparities and a
lack of access to competent healthcare in medically underserved areas.
As a result, it is imperative that the Federal Government continue its
commitment to minority health profession institutions and minority
health professional training programs to continue to produce healthcare
professionals committed to addressing this unmet need.
An October 2006 study by the Health Resources and Services
Administration (HRSA), entitled ``The Rationale for Diversity in the
Health Professions: A Review of the Evidence'' found that minority
health professionals serve minority and other medically underserved
populations at higher rates than non-minority professionals. The report
also showed that; minority populations tend to receive better care from
practitioners who represent their own race or ethnicity, and non-
English speaking patients experience better care, greater
comprehension, and greater likelihood of keeping follow-up appointments
when they see a practitioner who speaks their language. Studies have
also demonstrated that when minorities are trained in minority health
profession institutions, they are significantly more likely to: 1)
serve in rural and urban medically underserved areas, 2) provide care
for minorities and 3) treat low-income patients.
As you are aware, Title VII Health Professions Training programs
are focused on improving the quality, geographic distribution and
diversity of the healthcare workforce in order to continue eliminating
disparities in our Nation's healthcare system. These programs provide
training for students to practice in underserved areas, cultivate
interactions with faculty role models who serve in underserved areas,
and provide placement and recruitment services to encourage students to
work in these areas. Health professionals who spend part of their
training providing care for the underserved are up to 10 times more
likely to practice in underserved areas after graduation or program
completion.
Institutions that cultivate minority health professionals have been
particularly hard-hit as a result of the cuts to the Title VII Health
Profession Training programs in fiscal year 2006 (fiscal year 2006) and
fiscal year 2007 Funding Resolution passed earlier this Congress. Given
their historic mission to provide academic opportunities for minority
and financially disadvantaged students, and healthcare to minority and
financially disadvantaged patients, minority health professions
institutions operate on narrow margins. The cuts to the Title VII
Health Professions Training programs amount to a loss of core funding
at these institutions and have been financially devastating.
Mr. Chairman, I feel like I can speak authoritatively on this issue
because I received my medical degree from Morehouse School of Medicine,
a historically black medical school in Atlanta. I give credit to my
career in academia, and my being here today, to Title VII Health
Profession Training programs' Faculty Loan Repayment Program. Without
that program, I would not be the president of my father's alma mater,
Meharry Medical College, another historically black medical school
dedicated to eliminating healthcare disparities through education,
research and culturally relevant patient care.
Minority Centers of Excellence.--COEs focus on improving student
recruitment and performance, improving curricula in cultural
competence, facilitating research on minority health issues and
training students to provide health services to minority individuals.
COEs were first established in recognition of the contribution made by
four historically black health professions institutions (the Medical
and Dental Institutions at Meharry Medical College; The College of
Pharmacy at Xavier University; and the School of Veterinary Medicine at
Tuskegee University) to the training of minorities in the health
professions. Congress later went on to authorize the establishment of
``Hispanic'', ``Native American'' and ``Other'' Historically black
COEs. For fiscal year 2014, I recommend a funding level of $24.602
million for COEs.
NATIONAL INSTITUTES OF HEALTH (NIH)
National Institute on Minority Health and Health Disparities.--The
National Institute on Minority Health and Health Disparities (NIMHD) is
charged with addressing the longstanding health status gap between
minority and nonminority populations. The NIMHD helps health
professional institutions to narrow the health status gap by improving
research capabilities through the continued development of faculty,
labs, and other learning resources. The NIMHD also supports biomedical
research focused on eliminating health disparities and develops a
comprehensive plan for research on minority health at the NIH.
Furthermore, the NIMHD provides financial support to health professions
institutions that have a history and mission of serving minority and
medically underserved communities. For fiscal year 2014, I recommend
that this Institute's funding grow proportionally with the funding of
the NIH and add additional FTEs.
Research Centers at Minority Institutions.--The Research Centers at
Minority Institutions program (RCMI) is now housed at the National
Institute on Minority Health and Health Disparities (NIMHD). RCMI has a
long and distinguished record of helping our institutions develop the
research infrastructure necessary to be leaders in the area of health
disparities research. Although NIH has received unprecedented budget
increases in recent years, funding for the RCMI program has not
increased by the same rate. Therefore, the funding for this important
program grow at the same rate as NIH overall in fiscal year 2014.
DEPARTMENT OF HEALTH AND HUMAN SERVICES
Office of Minority Health.--Specific programs at OMH include:
--Assisting medically underserved communities with the greatest need
in solving health disparities and attracting and retaining
health professionals,
--Assisting minority institutions in acquiring real property to
expand their campuses and increase their capacity to train
minorities for medical careers,
--Supporting conferences for high school and undergraduate students
to interest them in health careers, and
--Supporting cooperative agreements with minority institutions for
the purpose of strengthening their capacity to train more
minorities in the health professions.
The OMH has the potential to play a critical role in addressing
health disparities, but this role can only be fulfilled if this agency
continues it grant making authority. For fiscal year 2014, I recommend
a funding level of $65 million for the OMH.
DEPARTMENT OF EDUCATION
Strengthening Historically Black Graduate Institutions Program.--
The Department of Education's Strengthening Historically Black Graduate
Institutions program (Title III, Part B, Section 326) is extremely
important to MMC and other minority serving health professions
institutions. The funding from this program is used to enhance
educational capabilities, establish and strengthen program development
offices, initiate endowment campaigns, and support numerous other
institutional development activities. In fiscal year 2014, an
appropriation of $65 million is suggested to continue the vital support
that this program provides to historically black graduate institutions.
Mr. Chairman, please allow me to express my appreciation to you and
the members of this subcommittee. With your continued help and support,
Meharry Medical College along with other minority health professions
institutions and the Title VII Health Professions Training programs can
help this country to overcome health and healthcare disparities.
Congress must be careful not to eliminate, paralyze or stifle the
institutions and programs that have been proven to work. Meharry and
other minority health professions schools seek to close the ever
widening health disparity gap. If this subcommittee will give us the
tools, we will continue to work towards the goal of eliminating that
disparity as we have done for 1876.
Thank you, Mr. Chairman, for this opportunity.
______
Prepared Statement of the Mine Safety and Health Administration
We are writing in opposition to the fiscal year 2014 Budget Request
for the Mine Safety and Health Administration (MSHA), which is part of
the U.S. Department of Labor. In particular, we urge the subcommittee
to reject MSHA's proposed de-funding of the Assistance to States grant
program pursuant to Section 503(a) of the Mine Safety and Health Act of
1977. Over the past several fiscal years, MSHA's budget request for
State grants was approximately $9 million, which approached the
statutorily authorized level of $10 million, but still did not fully
consider inflationary and programmatic increases being experienced by
the States. In fiscal year 2014, based on a realignment of priorities,
MSHA has chosen to zero out funding for State assistance grants. We
urge the subcommittee to restore funding to the statutorily authorized
level of $10 million for State grants so that States are able to fully
and effectively carry out their responsibilities under Sections 502 and
503 of the Act, including the training of our Nation's miners.\1\
The Interstate Mining Compact Commission is a multi-State
governmental organization that represents the natural resource,
environmental protection and mine safety and health interests of its 25
member States. The States are represented by their Governors who serve
as Commissioners.
It should be kept in mind that, whereas MSHA over the years has
narrowly interpreted Assistance to States grants as meaning ``training
grants'' only, Section 503 was structured to be much broader in scope
and to stand as a separate and distinct part of the overall mine safety
and health program. In the Conference Report that accompanied passage
of the Federal Coal Mine Health and Safety Act of 1969, the conference
committee noted that both the House and Senate bills provided for
``Federal assistance to coal-producing States in developing and
enforcing effective health and safety laws and regulations applicable
to mines in the States and to promote Federal-State coordination and
cooperation in improving health and safety conditions in the Nation's
coal mines.'' (H.Conf. Report 91-761). The 1977 Amendments to the Mine
Safety and Health Act expanded these assistance grants to both coal and
metal/non-metal mines and increased the authorization for annual
appropriations to $10 million. The training of miners was only one part
of the obligation envisioned by Congress.
IMCC's member States are concerned that without full funding of the
State grants program, the federally required training for miners
employed throughout the U.S. will greatly suffer. States have struggled
to maintain efficient and effective miner training programs in spite of
increased numbers of trainees and the incremental costs associated
therewith. The situation will likely be further exacerbated by new
statutory, regulatory and policy requirements that grow out of the
various reports and recommendations attending the Upper Big Branch
tragedy. In spite of all this, MSHA has chosen to eliminate funding
completely for this critical component of its statutory obligations. In
addition to State training programs, these assistance grants also
support State mine rescue training programs, mine rescue competitions,
EMT training, miner certifications, accident investigations and
reporting, review and approval of company safety plans, and, for those
States that operate more comprehensive mine safety and health programs
(such as PA, WV, VA, OH, IL, AL, KY and OK), program administrative
costs such as supplies, staff training, and travel. We can provide a
breakdown of these costs at the Committee's request.
In MSHA's budget justification document (at page 68), the agency
states that: ``Training plays a critical role in preventing deaths,
injuries, and illnesses on the job. By providing effective training,
miners are able to recognize possible hazards and understand the safe
procedures to follow. MSHA will continue its increased visibility and
emphasis on training because it is critically important to making
progress in reducing the number of injuries and fatalities.''
Furthermore, in an April 25, 2013 communication to State grant
recipients, MSHA specifically stated that ``effective and appropriate
training will ensure that miners recognize and understand hazards and
how to control or eliminate them.'' In a similar letter dated March 5,
2012, MSHA noted that ``the number of miners you reach yearly through
the training your program provides makes your contribution to the
success of the program all that more important.''
We are mystified about how MSHA intends to accomplish these stated
objectives without the training and other programs that are provided by
the States pursuant to the grants they receive from MSHA--as has been
the case since the enactment of the Mine Safety and Health Act in 1969.
By way of an explanation for the drastic cut to State grants, MSHA
indicates on page 69 of its budget justification document that the
agency has ``shifted priorities towards strengthening its enforcement
programs. The fiscal year 2014 request prioritizes activities MSHA
performs and applies limited budgetary resources to those areas where
they will have the greatest impact.'' MSHA goes on to note that it
``considers effective enforcement a top priority and proactive strategy
to ensure workplaces in the mining industry are safe and healthy''. And
yet, in recent fatality and accident investigation reports, MSHA has
noted that the majority of these occurrences were due to ineffective
training (generally by mine operators) and could have been prevented if
more had been done to educate miners about the dangers associated with
mining operations and conditions. See http://www.msha.gov/fatals/
fabm2013.asp.
MSHA's suggested fix for the de-funding of the State grant program
is to immediately shift training responsibilities and costs entirely to
mine operators. While this idea may have merit, we are uncertain about
the ability of the mining industry (especially small operators) to
accommodate these new costs and suspect that any realignment of
training responsibilities from the States to the industry will take
considerable time and planning. Furthermore, our experience over the
past 35 years has demonstrated that the States are often in the best
position to design and offer this training in a way that insures that
the goals and objectives of Sections 502 and 503 of the Mine Safety and
Health Act are adequately met. There is some evidence of training
programs offered by mine operators (or contractors on their behalf)
falling well below what would be considered a minimum standard for
these types of programs.
There have been no discussions with the States about the impacts
that this proposal will have on State training programs or mine safety
and health programs or about any sort of transition in how we are
currently doing business. To propose such a dramatic shift without
first consulting the States is inappropriate and a denigration of the
role the States have played in protecting our Nation's miners.
Furthermore, to expect such a drastic change in operations to occur
within a single fiscal year is unrealistic and will only result in
confusion and potential negative impacts to the availability and
quality of miner training and the overall health and safety of miners.
MSHA notes in its budget justification document that the de-funding
of State training grants will result in 180,000 miners in 47 States and
the Navajo Nation not receiving training compared to results in fiscal
year 2012. Those figures we believe are under-reported and fail to
reflect the full impact that the elimination of this funding will have
on the States. Examples of the direct impacts being reported by just
some of the IMCC member States as a result of MSHA's decision follow.
More expanded information from each State is appended to this statement
and we request that it be included in the record. The most recent
accounting of the number of miners trained by the States (and whose
training could be jeopardized by funding cuts) is as follows:
--Kentucky: Trained or tested over 10,000 people from 10/01/12-03/30/
13.
--Louisiana: 1,000 miners trained.
--Alaska: 2,600 miners trained.
--New Mexico: 2,000+ miners trained.
--Oklahoma: 5,000 miners trained.
--Pennsylvania: 7,000 miners trained.
--Ohio: 2,600 miners trained (including for mine rescue).
--Colorado: 2,800-3,700 miners trained.
--Arkansas: 2,000 miners trained
--North Carolina: 6,000-8,000 miners trained.
Interestingly, while MSHA is proposing to eliminate funding for
State training grants, it is proposing to increase funding by $800,000
and 6 FTEs for its Educational Field Services training specialists to
``review training plans, monitor and assist industry instructors to
develop and improve their skills, and assist mine operators with their
health and safety program.'' From our perspective, this reflects an
acknowledgement on MSHA's part that the transition to a totally
industry-lead training initiative will likely be fraught with
difficulties. However, heavy-handed Federal oversight is not the
solution to an effective training program. We have seen this type of
approach fail in the past and assert that the training programs
operated by the States have resulted in a higher level of success, as
indicated by the significantly reduced rates of injuries and fatalities
over the past several years. Congress has clearly understood this
dynamic as well, appropriating the necessary moneys needed to preserve
and enhance State training programs. It should also be kept in mind
that effective training programs operated by the States, especially for
small operators, are the first and best method to reduce accidents,
injuries and fatalities in mines. On the other hand, enforcement often
comes too late to be effective, and by its very nature is not
preventative. We are hopeful that Congress will once again recognize
these operational realities in fiscal year 2014 and turn back MSHA's
efforts to undercut these valuable programs.
While we can appreciate MSHA's desire to realign its resources to
focus on inspection and enforcement, one of the most effective ways to
insure miner health and safety in the first place is through
comprehensive and excellent training. MSHA Assistant Secretary Main
specifically spoke to this in the letter he sent to State grant
recipients last year wherein he stated: ``As in the past, we are
reaching out to the grantees, recognizing the positive impact you have
in delivering training to miners. I am asking that you incorporate, as
appropriate, training on these types of [fatal] accidents as well as
measures needed to prevent them. Increased training and awareness is
necessary if we are to prevent these types of deaths.'' The States have
been in the forefront of providing this training for over 35 years and
are best positioned to continue that work into the future. Furthermore,
the Federal Government's relatively modest investment of money in
supporting the States to handle this training has paid huge dividends
in protecting lives and preventing injuries. The States are also able
to provide these services at a cost well below what it would cost the
Federal Government to do so.
As you consider our request to reject MSHA's proposed cut and
instead to increase MSHA's budget for State assistance grants, please
keep in mind that the States play a particularly critical role in
providing special assistance to small mine operators (those coal mine
operators who employ 50 or fewer miners or 20 or fewer miners in the
metal/nonmetal area) in meeting their required training needs. This has
been a particular focus in those States where metal/non-metal mining
operations predominate. These are often small business operators who
cannot afford to offer the comprehensive training that is required
under Section 502 of the Mine Safety and Health Act. Given this
Administration's articulated concerns about the impacts of regulatory
decisions on small businesses, it is surprising that MSHA would propose
significant cuts to the training that States provide to these small
operators. Some States have also recently received requests from the
VFW to provide ``new miner training'' for returning war veterans in
order to prepare them for potential employment in the mining industry.
Without the funding provided to States by MSHA, this may be difficult
to accomplish in a timely manner, if at all.\2\
We appreciate the opportunity to submit our views on MSHA's fiscal
year 2014 budget request. Please contact us for additional information
or to answer any questions you may have.
State Reports re Impacts From De-Funding of Assistance to States Grants
Program
In preparation for IMCC's presentation of this statement to the
House and Senate Appropriations Committees, IMCC asked the States three
questions, noted below. Responses from each of the reporting States are
indicated.
What do you anticipate the impacts to your State will be from the
elimination of grant funding, including the number of miners
who may not be trained?
--Kentucky: These cuts will have a devastating effect on our program.
Kentucky trains over 20,000 miners yearly. The money we get
from MSHA pays our instructors' salaries.
--Louisiana: In Louisiana, the State training is performed through
the Louisiana Technical Community College system. If the grant
is eliminated, their mine safety training program would be
completely eliminated, closing its doors on Sept 30, 2013, and
laying off both of its employees. The program trains at least
1,000 miners each year (886 miners from Oct 1, 2012 to
present).
--Alaska: Eliminating MSHA training funding potentially impacts each
of the 16,400 employees and thousands of owner/operators and
contractors working in Alaska's mining industry as of January
2013. Up to 2,600 students are MSHA trained and certified each
year by the University of Alaska Mine and Petroleum Training
Service (``MAPTS''). MAPTS is the MSHA training grant recipient
in Alaska.
--New Mexico: In prior years the State of New Mexico, through New
Mexico Institute of Mining and Technology, received $147,000
from MSHA that was used to train miners in NM to meet the
regulatory requirements of 30 CFR Parts 46 and 48 which are
mandated training requirements for miners. We train over 2,000
miners in NM yearly. Most of these miners are employed at small
business operations in our State that cannot afford trainers at
their small operations. In addition we provide Spanish language
training to 200-300 miners yearly and are the only service
available to Spanish-speaking miners in the State.
--Oklahoma: The Oklahoma Miner Training Institute (OMTI) is funded in
part with the State grant. Utilizing the funding provided, OMTI
trains 5,000 miners annually in a variety of courses, such as
New Miner and Annual Refresher, in accordance with 30 CFR Parts
46 and 48. Without the fully funded support that the State
grant provides, the mining community in Oklahoma will be
impacted.
--Pennsylvania: Pennsylvania trains approximately 7,000 miners and
contractors in the Anthracite, Bituminous and Industrial
Minerals mines and facilities of the Commonwealth. This
training is provided at no cost to the mining community by in-
house staff, Pennsylvania State University and Schuylkill Vo-
Tech. We also provide a mine rescue program for small coal and
industrial minerals mines to comply with Federal mine rescue
requirements and required EMT training through Indiana
University of PA at no cost to mine operators. Although a
majority of large operators provide training for their
employees to meet Federal requirements, small mine and facility
operators and contractors rely on the MSHA grant for their
training needs. Pennsylvania also relies on the MSHA grant to
fund other aspects of our mine safety program. These include
staff training, health and safety conferences, mine rescue
contests, safety equipment, mine rescue supplies, and travel
related to these functions.
--Ohio: After reviewing our total surface training numbers for the
year 2012, it would appear that 1,369 trainees would not have
been trained if not for receiving funding from the States Grant
program.
--Colorado: The impact of the elimination of the MSHA training grant
to the miners of Colorado and our training program will be
acute. We trained 5,742 in fiscal year 2011 and 4,316 in fiscal
year 2012. This includes, coal, metal, non-metal and
contractors who serve the industry. The reduction would be
2,800--3,700 miners not trained, including many that receive
training in Spanish. The reduction would be salaries and
operating costs for two trainers. (The program has 5 FTE
total).
--Arkansas: While it is difficult for a service provider to estimate
the total impact on our State from the elimination of grant
funding, we can address how it will impact our ability to
provide the mandatory training to the miners and contractors
who have utilized our services for years. While the Arkansas
MSHA State Training Program has been proactive in trying to
maintain the program and continuing to provide effective
training to those requesting our service, it has become
increasingly difficult to recover the cost for salaries, State
match and travel for the sufficient number of staff needed to
meet the demand, as well as the costs for maintaining training
equipment and supplies. We have already eliminated one part-
time position and raised our training fees, but feel confident
that if we have to raise them again to generate the revenue
needed to sustain the program, it will become a financial
hardship on the small mining operations and contractors who are
our primary clients. At the current rate, without raising fees,
it is likely we would have to eliminate another part-time
position, therefore decreasing our ability to provide the
mandatory training to our clients requesting the service. Also,
grant funds have been used for our staff to attend national and
State MSHA conferences and training events. This would have to
be completely eliminated. The Arkansas MSHA State Training
Program trains an average of 2,000 individual miners and
contractors each year. We have been providing new miner, annual
refresher, and first aid training.
--North Carolina: If State Grant funding is eliminated, we would be
reducing our staff of 6 to a staff of 2 based on our State
appropriations and the fact we would not be awarded any
additional appropriations. I would estimate there would be
6,000 miners we would not be able to provide training for based
on previous number of miners and contractors trained. We
average training at around 8,000 miners per year. This would be
a devastating burden on the small operators who rely on us to
assist them with their safety and health programs. Not only
will they have to pay a significant amount of money for future
training but the quality of training will certainly be a
concern. There are many private instructors who do not provide
effective, quality training. The mining industry is
experiencing the lowest incident rates ever, lowest amount of
accidents, and a record low number of fatalities and we feel
quality, effective training plays a major role with accident
prevention.
To what extent will the mining in your State be able to ``develop their
own programs or contract these services''? How long do you
anticipate this would take?
--Kentucky: The majority of our mines involve small mines and have no
trainers. The small mines send their employees to our Office of
Mine Safety and Licensing to receive quality training free of
charge. These miners will have to pay a private instructor and
in turn receive inadequate training and in some cases will
receive no training at all. We've seen many problems in the
past with some private instructors not conducting adequate
training and they have been reported to the Federal Mine Safety
and Health Review Commission for sanctions.
--Louisiana: In the absence of our State training program, the mining
industry would have to return to ``fending for themselves'' to
train its miners, resulting in an increased cost to industry
and possibly lower quality of training for individual miners.
--Alaska: The majority of mines in Alaska are small operations with
less than 10 employees that do not have the resources or
capabilities to develop and maintain their own training and
certification systems. It is uncertain how long it may take to
develop programs or contract MSHA training services. At this
point, there are no MSHA training providers other than MAPTS
consistently available for small mines in Alaska.
--Oklahoma: The training OMTI provides serves all of the mining
industry, in particular the smaller mining operations. Without
the training courses offered, the smaller mine sites are most
susceptible to see increased costs and lack of fully trained
miners as required in 30 CFR Parts 46 and 48.
--Pennsylvania: Without the MSHA funding, small operators will have
to either conduct their own training or use training
contractors. Penn State University and Schuylkill Vo-Tech have
established a reputation and trust with the operators with a no
fee option. If the operators wish to continue this arrangement,
a significant cost per student must be absorbed by the
operators. The quality of training provided by the PA Bureau of
Mine Safety, Pennsylvania State University, Schuylkill Vo-Tech
and Indiana University of PA is very high and loss of this
program will have a negative impact on miner safety. It will
also impact Pennsylvania's ability to maintain its world class
mine safety program and ability to support program functions
identified above. One example: Federal law requires all mine
rescue teams to attend at least two competitions each year,
with the States supporting this requirement by holding and
supporting these contests. With State budgets shrinking, the
ability to support these contests without Federal funding is in
jeopardy.
--Ohio: From past experience, the larger mining companies could deal
with developing their own programs and could contract out these
services if needed. The smaller companies and contract miners
would be the ones who either would be left out, or would
struggle with maintaining their training programs. As far as
the time it would take for these companies and contractors to
assume total responsibility for complying with MSHA's training
law standards, it would take a considerable amount of time.
--Colorado: The reduction in support of mine training particularly
affects the medium and small operators who make up 95 percent
of the mining operations in Colorado. This severely reduces the
affect we can all have on preventing accidents and injuries
BEFORE they become a major incident. Unfortunately, this will
leave many operators with few resources for safety and health
and result in an increase in MSHA enforcement inspection time,
citations, and most unfortunately, a likely increase in injury
and accident rates in our State.
--Arkansas: Since the Arkansas MSHA State Training Program places
emphasis on assisting small mining operations and contractors,
we are aware that most of these companies are neither staffed
nor equipped to provide effective training; whereas, the State
Grant staff has multiple years of combined training experience.
Small companies are at a distinct disadvantage in the area of
providing their own training.
--North Carolina: Many small operators will not have the resources to
develop their own programs adequately. Many of them would not
know how to develop lesson plans, outlines, and have the time
or resources to prepare a training program. They would have to
contract their training out to consultants. Mine safety
training was geared to be site-specific and company-specific
which is how we prepare for our classes for mining operations.
Consultants will use a ``canned program'' and there are quality
control concerns with a canned program. We know of operators
who also rely on on-line training and the miners do not like it
because there is no interaction or discussion taking place with
on-line training. In terms of how long it will take for an
operator to implement its own safety and health training
program--probably at least a year or longer.
What other unanticipated consequences from the elimination of State
grant funding might there be, particularly with respect to
miner safety and health?
--Kentucky: In our opinion the miners will be the ones to suffer
most. They will have to pay for the classes, they will not get
adequate training, and the end result will be an increase in
mine fatalities.
--Louisiana: It strikes us as particularly unfortunate that MSHA
would choose this route of cost savings given that many
fatalities are found to have insufficient training as a root
cause.
--Alaska: Eliminating training funding is expected to lead to an
increase in mining accidents and creates an artificial need for
increased enforcement on mine sites. Reduced MSHA-supported
training will damage the evolution of safety culture
improvements in the mining industry. Focusing solely on
enforcement is likely to further deteriorate individual
attitudes toward MSHA and voluntary compliance with MSHA
requirements.
--New Mexico: The Mine Act of 1977 was very specific in Sections 502
and 503 regarding the requirement to train miners and to fund
State programs to meet the requirements of the Act. We are a
small organization that uses our funding wisely to provide low
cost training services to small business and non-English
speaking miners in our State. We believe this to be an
efficient use of these funds to educate our miners, thereby
providing good paying jobs in a safer environment.
--Pennsylvania: There is no question that cutting the State Grant
Program goes against the intent of Congress, but more important
it will have a negative impact on the health and safety of our
Nation's miners. Every MSHA accident investigation report
highlights the need for quality training to eliminate and
reduce accidents. Not funding the State Grant Program at the
maximum amount ($10,000,000) is misguided and wrong and will
impact our ability to see that all workers go home to their
families at the end of each work shift.
--Ohio: For smaller mines and with the contract miners, their safety
training would suffer, thus causing a potential increase in
mining accidents and serious injuries.
--Colorado: Like other States, we maintain a unique and trusting
relationship with our mine operators and contractors through
regular contact, assistance (such as safety audits, etc.) and
education and training. We can quickly access and update our
mining community regarding the wide range of regulatory
requirements, technological improvements in mine safety and
sharing of mine health and safety resources. The State program
is the gold standard for providing effective and innovative
mine health and safety training and training mine employees and
contractors to effectively train their own employees.
--Arkansas: We believe we will see accidents trend upward. The
training provided by the Arkansas MSHA State Training Program
has proven to have an impact on reduction in accidents; the
statistics reveal that the companies who utilize the State
services for their training needs have fewer accidents than the
companies who have chosen to go another route to obtain their
training. Also, company training might not be comprehensive in
certain areas, such as miners' statutory rights, including the
right to be provided a safe working environment and the right
to refuse to perform unsafe tasks. The State Training program
provides comprehensive training that supports accident
prevention by focusing on eliminating unsafe practices and
conditions that contribute to accidents. State training
reinforces miner knowledge of safe work behavior and encourages
safe work practices, as well as increasing their knowledge in
identifying an unsafe work environment as detailed in the Code
of Federal Regulations. In addition to training, the State
Training staff receives constant e-mails and phone calls
regarding safety and health issues. Many of the companies and/
or individuals the State Grants staff have worked with over the
years are not comfortable going directly to Federal MSHA with
questions or concerns; whereas, the State has developed a
cooperative relationship that has proven mutually beneficial.
--North Carolina: Impacts would include not being available to
provide special emphasis projects such as mock drills, mine
safety and health law seminars, annual mine safety and health
State conferences, explosives safety courses, and not being
able to properly prepare training programs geared to site-
specific needs of mining operations. Training plan assistance
will not be provided. Fatalities, accidents, and incident rates
will be on the rise because of ineffective training.
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\1\ We should also note that to date, the States have still not
received official notification from MSHA about grant awards for fiscal
year 2013. Until that occurs, States will be unable to submit grant
applications as anticipated by Section 503 of the Act. In this regard,
we would also note that MSHA has inappropriately, and likely illegally,
expanded the across-the-board cuts required by sequestration from 9
percent to 65 percent without justification or authorization.
\2\ We are also concerned about proposed cuts for the National Mine
Safety and Health Academy, which has traditionally provided State grant
recipients access to training programs and lodging without charge. MSHA
has proposed a $1.5 million cut for the Academy that could well
eliminate this critical service to the States.
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______
Prepared Statement of the National Academy of Public Administration
Mr. Chairman and members of the subcommittee: My name is Dan G.
Blair, President and CEO, and I appreciate this opportunity to offer
the written views of the National Academy of Public Administration (the
Academy) on issues affecting the fiscal year 2014 appropriations for
agencies and programs within the jurisdiction of the Subcommittee on
Labor, Health and Human Services, Education and Related Agencies. I am
the President and CEO of the National Academy of Public Administration.
Chartered by Congress, the Academy is an independent nonprofit
organization dedicated to helping leaders address today's most critical
and complex challenges. Our organization consists of nearly 800
Fellows--including former cabinet officers, Members of Congress,
governors, mayors, and State legislators, as well as distinguished
scholars, business executives, and public administrators.
Governing in the 21st century has become increasingly complex. As
mandated by our Charter (Public Law 98-257, Sec. 3), the Academy helps
public institutions address their most critical challenges through in-
depth studies and analyses, advisory services and technical assistance,
Congressional testimony, forums and conferences, and online stakeholder
engagement. Our Charter permits Congress to request that the Academy
conduct work for Federal cabinet departments and agencies. Currently,
we are providing such assistance in the following projects:
--Assessing the STOCK Act's Financial Disclosure Requirement.--In
response to a Congressional mandate, the Academy is conducting
an independent review of the impact of providing financial
disclosures online for Executive Branch senior career and
political appointees and congressional staff. This review is
considering a range of issues, including how best to manage the
balance between promoting transparency and accountability while
protecting privacy and security. The Academy Panel is examining
such critical topics as the degree of risk to Federal missions
and employees associated with the online disclosure, as well as
any harm that has arisen from current online disclosure in the
legislative branch.
--Evaluating the Pension Benefit Guaranty Corporation's Governance
Structure.--Congress has requested that the Academy conduct a
review of the current governance structure of the Pension
Benefit Guaranty Corporation (PBGC), which provides retirement
income protection to millions of Americans. The Academy has
formed a five-member Panel of Fellows to lead this study. The
Panel will issue recommendations on such key governance issues
as the ideal size and composition of the PBGC Board of
Directors and the policies necessary to enhance Congressional
oversight and Board transparency, as well as to mitigate
potential conflicts of interest.
Over the past few years, the Academy has worked with agencies
across the Federal Government to help them address critical governance
and management challenges. Further examples of congressionally-mandated
work include the two following reports that were released in January
2013:
--Government Printing Office.--At the request of Congress, the
Academy conducted a broad operational review of Government
Printing Office (GPO) to update past studies of GPO operations;
examine the feasibility of GPO continuing to perform executive
branch printing; and identify additional cost saving
operational alternatives. The Academy's independent Panel
concluded that, in the digital age, ensuring permanent public
access to authentic Government information remains a critical
Government responsibility. GPO and the rest of the Federal
Government must continue to ``reboot'' to perform this mission
successfully in the digital age. The Panel issued fifteen
recommendations intended to position the Federal Government for
the digital age, strengthen GPO's business model, and further
GPO's continuing transformation.
--Department of Energy.--The Department of Energy's (DOE) national
laboratories have occupied a central place in the landscape of
American science for more than 50 years. Congress tasked the
Academy to review how DOE oversees its contractor-operated
labs, including a review of the performance metrics and systems
that DOE uses to evaluate the performance of the labs. While
conducting this review, the Academy Panel overseeing this study
determined that these management issues must be considered as
part of a broader issue about defining and ensuring the future
of the lab complex. The Academy's independent Panel issued
findings and recommendations regarding the labs as a national
asset, how to evaluate the labs, and how to conduct systems-
based oversight.
Apart from the traditional management and congressionally-mandated
studies, the Academy endeavors to provide a forum for our Fellows to
engage in thought leadership efforts and provide practical support to
Federal agencies in addressing pressing issues in public
administration. For example, we have been working with the Office of
Management and Budget to manage the Collaborative Forum, whereby the
Academy facilitates discussions, supports participants in the
development of pilot ideas and offers its collective knowledge about
the intergovernmental system. The Forum draws on State and other
stakeholder expertise to generate, develop, and consult on innovations
in how States administer federally funded assistance programs. These
innovations seek to improve payment accuracy and service delivery,
enhance administrative efficiency and reduce barriers to program
access. More information on this project can be found on the Forum's
website, http://home.community.collaborativeforumonline.com/. I believe
that such collaborative efforts between Federal, State, local, and
private sector stakeholders can improve program delivery and ultimately
reduce costs.
Another example of the exercise of the Academy's thought leadership
efforts is evidenced in the election transition area. This past year,
the Academy and the American Society for Public Administration (ASPA)
launched a joint ``Memos to National Leaders'' project to develop memos
to national leaders on how to address the most challenging policy and
management challenges facing the Nation. These memos can be found at
www.memostoleaders.org and addressed the following topics:
--Strengthening the Federal Budget Process;
--Rationalizing the Intergovernmental System;
--Administrative Leadership;
--Strengthening the Federal Workforce;
--Reorganization of Government;
--Information Technology and Transparency;
--Managing Big Initiatives;
--Next Steps in Improving Performance; and
--Managing Large Task Public-Private Partnerships.
The memos were developed with both a Presidential and Congressional
focus, reflecting the joint ownership of problems and solutions for
these major challenges.\1\
The Academy has also established a ``Political Appointee Project''
to inform current discussions about improving the presidential
appointments process. We hope to serve as an important forum for this
discussion. Our website (http://www.politicalappointeeproject.org/)
contains information on previous related studies, as well as ongoing
commentaries on this issue by Academy Fellows and other experts in the
field; serves as a repository of profiles of the key management
positions in Government; and provides insights to new political
executives on the challenge of managing in Government.
In summary, the Academy has a long track record of working across
the Federal Government to address critical governance and management
challenges. Effectively managing scarce Federal dollars is a goal
shared across the aisle. The Academy stands ready to assist the
subcommittee in its oversight efforts to enhance and improve agency and
program performance.
---------------------------------------------------------------------------
\1\ These memos are the opinions and views of their respective
authors, and are not the opinions of the Academy or ASPA. They can be
accessed at http://www.memostoleaders.org/memos-national-leaders.
---------------------------------------------------------------------------
______
Prepared Statement of the National AHEC Organization
Chairman Harkin and distinguished members of the subcommittee, as
you begin to craft the fiscal year 2014 (fiscal year 2014) Labor-HHS-
Education appropriation bill, the members of the National Area Health
Education Center-AHEC Organization (NAO) are pleased to submit this
statement for the record recommending $33.142 million in fiscal year
2014 for the AHEC program authorized under Title VII of the Public
Health Service Act and administered through the Health Resources and
Services Administration (HRSA). This funding level ensures that AHECs
can continue to lead the Nation in the recruitment, training and
retention of a diverse health workforce for underserved, rural, and
urban communities.
The NAO is the professional organization representing AHECs. The
AHEC Program has been established for over 40 years and acts as an
effective national primary care training network built on committed
partnerships of 120 medical schools and 60 nursing and allied health
schools. Additionally, 235 AHEC community-based centers operate in 46
States, 4 territories and 250 rural and urban underserved communities
alongside tens of thousands of community practitioners affiliated with
the AHEC's national clinical training network.
AHEC is one of the Title VII Health Professions Training programs,
originally authorized at the same time as the National Health Service
Corps (NHSC) to create a complete mechanism to provide primary care
providers for Community Health Centers (CHCs) and other direct
providers of health care services for underserved areas and
populations. The plan envisioned by creators of the legislation was
that the CHCs would provide direct service. The NHSC would be the
mechanism to fund the education of providers and supply providers for
underserved areas through scholarship and loan repayment commitments.
The AHEC program would be the mechanism to recruit providers into
primary health careers, diversify the workforce, and develop a passion
for service to the underserved in these future providers, i.e. Area
Health Education Centers are the workforce development, training and
education machine for the Nation's health care safety-net programs. The
AHEC program is focused on improving the quality, geographic
distribution and diversity of the primary care healthcare workforce and
eliminating the disparities in our Nation's healthcare system.
AHECs develop and support the community based training of health
professions students, particularly in rural and underserved areas. They
recruit a diverse and broad range of students into health careers, and
provide continuing education, library and other learning resources that
improve the quality of community-based healthcare for underserved
populations and areas.
The AHEC program is effective and provides vital services and
national infrastructure. Nationwide, over 431,000 students have been
introduced to health career opportunities, and over 30,000 mostly
minority and disadvantaged high school students received more than 20
hours each of health career exposure. 63,456 health professions
students received training at 11,906 underserved clinical and
community-based sites, and furthermore; 442,926 health professionals
received continuing education in a variety of disciplines including
mental health, allied health, and nursing. AHECs perform these
education and training services through collaborative partnerships with
Community Health Centers (CHCs) and the National Health Service Corps
(NHSC), in addition to Rural Health Clinics (RHCs), Critical Access
Hospitals, (CAHs), Tribal clinics and Public Health Departments.
Justification for Recommendations
The AHEC network is an economic engine that fuels the recruitment,
training, distribution, and retention of a national health workforce.
AHEC stands for JOBS.
--Primary Care services improve the health of the population, and
therefore increase productivity of the U.S. workforce, while at
the same time, contain costs within the U.S. healthcare system.
Primary care practitioners are the front-line in prevention of
disease, providing cost savings in the United States healthcare
system.
-- AHECs are critical in the recruitment, training, and retention
of the primary care workforce.
--Research has demonstrated that the community-training network is
the most effective recruitment tool for the health professions
and those who teach remain longer in underserved areas and
communities.
-- AHECs are in almost every county in the United States.
--With the aging and growing population, the demand for primary care
workforce is far outpacing the supply.
-- AHECs continue to educate and train current workforce, as well
as recruiting and preparing future workforce.
--AHECs foster a national pipeline for community-based health
professions education connecting students to careers,
professionals to communities, and communities to better health.
-- AHECs introduce over 431,000 students to health career
opportunities with a special emphasis on recruiting under-
represented minority and disadvantaged students who return
to their underserved communities due to the fact that AHEC
develops and supports community-based interdisciplinary
training in underserved areas.
--AHECs facilitate and support health professionals, facilities,
and community based organizations in effectively addressing
critical local health issues by providing continuing
educational services to improve quality of community based
care.
-- AHECs trained 442,926 Health Professionals in 46 States and 4
territories in 13,842 Health Professions Shortage Areas
(HPSAs)--28.4 percent of those trained were physicians, 19
percent were nurses, and 8.1 percent were allied health
professionals.
-- AHECs provided 3.2 million contact hours of health education
programs to over 246,000 active community members.
The AHEC network's outcomes are the backbone of the Nation's
community-based health professions training, with a focus on training
primary care workforce.
--HRSA has encouraged functional linkage between Bureau of Primary
Care and Bureau of Health Professions Programs.
--AHECs have partnerships with over 1,000 Community Health Centers
nationally to recruit, train, and retain health professionals
who have the cultural and linguistic skills to serve in HRSA
designated underserved areas.
--AHECs via a cooperative agreement with HRSA are training 10,000
primary care providers throughout the county to address OIF/
OEF/OND Veteran's mental health, substance abuse, traumatic
brain injury and post-traumatic stress disorder for those not
utilizing the VA system.
______
Prepared Statement of National Alliance for Eye and Vision Research
EXECUTIVE SUMMARY
NAEVR requests fiscal year 2014 NIH funding of $32 billion, which
reflects a $1.38 billion, or 4.5 percent increase, over fiscal year
2012, which consists of biomedical inflation of 2.8 percent plus modest
growth. This recommendation reflects the minimum investment necessary
to make up for the twenty percent loss in purchasing power over the
last decade, as well as the impact of the sequester, which cut 5.1
percent or $1.6 billion from NIH's $30.8 fiscal year 2013 billion
budget.
NIH, our Nation's biomedical research enterprise, is unique in
that:
--Its basic and clinical research has helped to understand the basis
of disease, thereby resulting in innovations in healthcare to
save and improve lives.
--Its research serves an irreplaceable role the private sector could
not duplicate.
--It has been shown through several studies to be a major force in
the economic health of communities across the Nation. The
latest United for Medical Research report estimates that NIH
funding supported more than 432,000 jobs in 2011, directly or
indirectly, and generated more than $62.1 billion in economic
activity.
NAEVR requests National Eye Institute (NEI) funding at $730
million, commensurate with the overall NIH funding increase. The
President's budget proposes an fiscal year 2014 NEI funding reduction
of $2.1 million to a level $699 million which is unacceptable since:
--It cuts 35 competing grants. The $36 million cut in fiscal year
2013 NEI funding due to the sequester has already translated
into a loss of an estimated 90 grants--any one of which holds
the promise to save or restore vision.
--The cut jeopardizes NEI's ability to fund new and compelling
scientific ideas to advance research, which were identified
through its Audacious Goals Initiative.
--Funding at $699 million is little more than 1 percent of the $68
billion annual cost of eye disease/vision impairment in the
U.S. With the majority of the 78 million Baby Boomers turning
65 years of age this decade and facing the greatest risk of
aging eye disease, a cut jeopardizes NEI's ability to meet the
vision challenges presented by this ``Silver Tsunami.''
CONGRESS MUST IMPROVE UPON THE PRESIDENT'S FISCAL YEAR 2014 REQUEST,
SINCE IT CUTS NEI FUNDING BY $2.1 MILLION, OR 0.3 PERCENT BELOW FISCAL
YEAR 2012, REDUCING IT BY $8 MILLION BELOW ITS BASE FISCAL YEAR 2010
LEVEL
Despite the President's request increasing NIH funding by $471
million, or 1.5 percent, over the fiscal year 2012 level of $30.6
billion (net of transfers), it proposes to cut NEI by $2.1 million, or
0.3 percent, below its fiscal year 2012 level of $701.3 million (net of
transfers). Although the cut is primarily driven by an $8.9 million
reduction due to the conclusion of the NEI-sponsored Ocular
Complications of AIDS (SOCA) studies which are funded by the NIH Office
of AIDS Research, it is still a cut and drives NEI funding in the wrong
direction. The President's proposed fiscal year 2014 NEI funding level
of $699 million falls $8 million below the base fiscal year 2010 level
of $707 million, the highest NEI funding level ever prior to the
addition of American Recovery and Reinvestment Act (ARRA) funding.
Most importantly, the President's proposed fiscal year 2014 NEI cut
of $2.1 million comes after the fiscal year 2013 sequester cut of $36
million. The President's fiscal year 2014 budget would cut 35 competing
grants from NEI funding, which follows the sequester's cut of an
estimated 90 grants in fiscal year 2013--any one of which may hold the
promise to save or restore vision.
NEI is already facing enormous challenges this decade: each day,
from 2011 to 2029, 10,000 citizens will turn 65 and be at greatest risk
for eye disease; the African American and Hispanic populations are
experiencing a disproportionately higher incidence of eye disease; and
the epidemic of obesity is significantly increasing the incidence of
diabetic retinopathy and diabetic macular edema. In 2009, Congress
spoke volumes in passing S. Res 209 and H. Res. 366, which designated
2010-2020 as The Decade of Vision. With the fiscal year 2014 LHHS
spending bill, Congress can act upon its past resolutions regarding
vision and assure that NEI is adequately funded to meet these
challenges.
NAEVR also requests NEI funding at $730 million since our Nation's
investment in vision health is an investment in overall health. NEI's
breakthrough research is a cost-effective investment, since it is
leading to treatments and therapies that can ultimately delay, save,
and prevent health expenditures, especially those associated with the
Medicare and Medicaid programs. It can also increase productivity, help
individuals to maintain their independence, and generally improve the
quality of life, especially since vision loss is associated with
increased depression and accelerated mortality.
The very health of the vision research community is also at stake
with a decrease in NEI funding. Not only will funding for new
investigators be at risk, but also that of seasoned investigators,
which threatens the continuity of research and the retention of trained
staff, while making institutions more reliant on bridge and
philanthropic funding. If an institution needs to let staff go, that
usually means a highly-trained person is lost to another area of
research or an institution in another State, or even another country.
The proposed reduction in NEI funding threatens the United States'
leadership in biomedical research in general, and vision research,
specifically.
$730 million fiscal year 2014 funding enables nei to pursue audacious
goals in vision research
The NEI is in the middle of a novel planning initiative to identify
long-term, ten-year goals in vision research. Under the auspices of the
National Advisory Eye Council, this expansion of NEI program planning
is designed to engage and energize the vision research community and
help the NEI establish the most compelling research priorities by
identifying one or more ``audacious goals.'' Most recently, NEI hosted
200 representatives from every sector of the vision community, as well
as Government scientists and regulators from various disciplines at the
NEI's Audacious Goals Development meeting. NIH Director Francis
Collins, M.D., Ph.D. was very enthusiastic about this initiative and
urged the attendees to have a ``bold vision for vision'' by describing
NEI's long tradition of leading in the biomedical research arena,
including:
--identifying more than 500 genes associated with vision loss, which
is one-quarter of all genes discovered to date; and
--funding the successful human gene therapy trial for patients with
Leber Congenital Amaurosis, in which treated patients have
experienced vision improvement.
The meeting's discussion topics were built around the ten winning
submissions from a pool of nearly 500 entries selected through NEI's
Audacious Goals in Vision Research and Blindness Rehabilitation
Challenge, a competition for bold and novel ideas to dramatically
advance vision science. These ideas included restoring light
sensitivity to the blind through gene-based therapies and visual
prosthetics, pinpoint correction of defective genes, and growing
healthy tissue from stem cells for ocular tissue transplants.
Translating these and other research ideas into safe and effective
treatments to save and restore vision requires adequate funding.
As a result of past funding, the NEI has made great strides in
determining the genetic basis of age-related macular degeneration
(AMD)--the leading cause of blindness and a disease for which very
little could be done just a few short years ago. NEI's AMD Gene
Consortium, a network of international investigators, has just
discovered seven new regions of the human genome--called loci--that are
associated with increased risk of AMD. They also confirmed 12 loci
already identified in previous studies. These loci implicate a variety
of biological functions, including regulation of the immune system,
maintenance of cellular structure, growth and permeability of blood
vessels, lipid metabolism, and atherosclerosis. By understanding the
genetic basis of the disease and underlying disease mechanisms, NEI can
develop appropriate diagnostic and therapies.
As an example of NEI-supported research that saves vision, in
February 2013 the Food and Drug Administration (FDA) approved an
implanted retinal prosthesis to treat adult patients with advanced
retinitis pigmentosa (RP), a rare genetic condition that damages the
retina and leads to blindness. A small video camera mounted on a pair
of glasses sends images to a video processing unit that converts them
to electronic data that is wirelessly transmitted to an array of
electrodes implanted onto the retina. The device is enabling those who
are otherwise completely blind to identify doors, crosswalks, and even
utensils on a table. Although this ``Bionic Eye'' may have been a
fantasy just a few short years ago, the NEI has always envisioned the
future. Funding must be adequate for it to successfully pursue its goal
of saving and restoring vision.
BLINDNESS AND VISION LOSS IS A GROWING PUBLIC HEALTH PROBLEM THAT
INDIVIDUALS FEAR AND WOULD TRADE YEARS OF LIFE TO AVOID
The NEI estimates that more than 38 million Americans age 40 and
older experience blindness, low vision, or an age-related eye disease
such as AMD, glaucoma, diabetic retinopathy, or cataracts. This is
expected to grow to more than 50 million Americans by year 2020.
Although the NEI estimates that the current annual cost of vision
impairment and eye disease to the U.S. is $68 billion, this number does
not fully quantify the impact of indirect healthcare costs, lost
productivity, reduced independence, diminished quality of life,
increased depression, and accelerated mortality. NEI's proposed fiscal
year 2014 funding of $699 million reflects just a little more than 1
percent of this annual cost of eye disease. The continuum of vision
loss presents a major public health problem, as well as a significant
financial challenge to both the public and private sectors.
Vision loss also presents a real fear to most citizens:
--In public opinion polls over the past 40 years, Americans have
consistently identified fear of vision loss as second only to
fear of cancer. NEI's Survey of Public Knowledge, Attitudes,
and Practices Related to Eye Health and Disease reported that
71 percent of respondents indicated that a loss of their
eyesight would rate as a ``10'' on a 1 to 10 scale, meaning
greatest impact on their life.
--In patients with diabetes, going blind or experiencing vision loss
rank among the top four concerns about the disease. These
patients are so concerned about vision loss diminishing their
quality of life that those with nearly perfect vision (20/20 to
20/25) would be willing to trade 15 percent of their remaining
life for ``perfect vision,'' while those with moderate
impairment (20/30 to 20/100) would be willing to trade 22
percent of their remaining life for perfect vision. Patients
who are legally blind from diabetes (20/200 to 20/400) would be
willing to trade 36 percent of their remaining life to regain
perfect vision.
NAEVR URGES CONGRESS TO FUND NIH AT $32 BILLION, NEI AT $730 MILLION,
IN FISCAL YEAR 2014 TO ENSURE THE MOMENTUM OF RESEARCH, TO RETAIN
TRAINED PERSONNEL, AND MAINTAIN U.S. LEADERSHIP
ABOUT NAEVR
NAEVR, which serves as the ``Friends of the NEI,'' is a 501(c)4
non-profit advocacy coalition comprised of 55 professional
(ophthalmology and optometry), patient and consumer, and industry
organizations involved in eye and vision research. Visit NAEVR's Web
site at www.eyeresearch.org.
______
Prepared Statement of the National Alopecia Areata Foundation (NAAF)
NAAF Fiscal Year 2014 LHHS Appropriations Recommendations
--Protect medical research and patient care programs from devastating
funding cuts through sequestration and deficit reduction
activities.
--$7.8 billion for CDC, an increase of $1.7 billion over fiscal year
2012.
--$32 billion for NIH, an increase of $1.3 billion over fiscal year
2012.
Chairman Harkin, Ranking Member Moran, and distinguished members of
the subcommittee, thank you for the opportunity to submit testimony on
behalf of NAAF. It is my privilege to represent the great group of
individuals affected by the autoimmune disease alopecia areata.
About the Foundation and Our Research
NAAF, headquartered in San Rafael, CA, supports research to find a
cure or acceptable treatment for alopecia areata, supports those with
the disease, and educates the public about alopecia areata. NAAF is
governed by a volunteer Board of Directors and a prestigious Scientific
Advisory Council. Founded in 1981, NAAF is widely regarded as the
largest, most influential, and most representative foundation
associated with alopecia areata. NAAF is connected to patients through
local support groups and also holds an important, well-attended annual
conference that reaches many children and families.
Recently, NAAF initiated the Alopecia Areata Treatment Development
Program (TDP) dedicated to advancing research and identifying
innovative treatment options. TDP builds on advances in immunological
and genetic research and is making use of the Alopecia Areata Clinical
Trials Registry which was established in 2000 with funding support from
the National Institute of Arthritis and Musculoskeletal and Skin
Diseases (NIAMS); NAAF took over responsibility financial and
administrative responsibility for the Registry in 2012 and continues to
add patients to it. NAAF is engaging scientists in active review of
both basic and applied science in a variety of ways, including the
November 2012 Alopecia Areata Research Summit featuring presentations
from the Food and Drug Administration (FDA) and NIAMS.
At the Research Summit Dr. Angela Christiano of Columbia
University, discoverer of the genetic basis of alopecia areata,
presented her progress in genetics research. A joint analysis performed
with an independent genome-wide association study (GWAS) of 1435 cases
and 2032 controls resulted in the validation of previous GWAS targets
and the identification of new associated genes. Some of these
associated genes are unique to the hair follicle in alopecia areata.
Dr. Christiano discussed targeting the IFN signature in the treatment
of alopecia areata. She also discussed the genetic relationship between
alopecia areata and other autoimmune diseases including the minimal
overlap with psoriasis or vitiligo. This work greatly expands our
understanding of the genetic architecture of this highly prevalent
autoimmune disease.
Later this year the Proceedings of the Summit will be published in
the Journal for Investigative Dermatology (JID). The participants will
be finalizing the goals for the next 2 years to be met by the following
Alopecia Areata Research Summit in the fall of 2014. Those goals
include:
Genetics:
--Execute combined association and linkage studies using 250
multiplex families from the Alopecia Areata Registry
--Utilize functional genomics with deep sequencing
--Develop network pilot
--Analyze shared variants with related diseases including celiac
disease, rheumatoid arthritis, type 1 diabetes; 5 loci
shared between type 1 diabetes and alopecia areata
--Develop a biobank
--Determine if there is a genetic basis for disease subsets, i.e.
alopecia areata patchy, alopecia areata totalis, alopecia
areata universalis
--Increase alopecia areata samples to 10,000
Immunology:
--Study how to restore immune privilege
--Analyze the potential of targeting IL-15 pathway
--Identify the protolerance TCR signal; then target it
pharmacologically
--Develop T cell receptor sequencing
--Complete biomarker studies
Animal Models:
--Identify and develop mouse and humanized mouse models
--Validate models
--Determine which model will be the best to replicate alopecia
areata
Clinical:
--Finalize and validate Alopecia Areata Uniform Protocol
--Publish quality of life studies
--Publish incidence and prevalence studies
--Initiate burden of diseases studies
--Use pharmacogenomics to predict patient populations that will
respond and which will get side effects
-- Determine the attractive pathways for targeted therapy
--Continue collaborations with industry and Government agencies to
facilitate the regulatory path for alopecia areata
treatments
About Alopecia Areata
Alopecia areata is a prevalent autoimmune skin disease resulting in
the loss of hair on the scalp and elsewhere on the body. It usually
starts with one or more small, round, smooth patches on the scalp and
can progress to total scalp hair loss (alopecia totalis) or complete
body hair loss (alopecia universalis).
Alopecia areata affects approximately 2 percent of the population,
including more than five million people in the United States alone. The
disease disproportionately strikes children and onset often occurs at
an early age. This common skin disease is highly unpredictable and
cyclical. Hair can grow back in or fall out again at any time, and the
disease course is different for each person. In recent years,
scientific advancements have been made, but there remains no cure or
indicated treatment options. We do not have known biomarkers at this
time but an NIH-funded study is seeking to identify biomarkers.
The true impact of alopecia areata is more easily understood
anecdotally than empirically. Affected individuals often experience
significant psychological and social challenges in addition to the
biological impact of the disease. Depression, anxiety, and suicidal
ideation are health issues that can accompany alopecia areata. The
knowledge that medical interventions are extremely limited and of minor
effectiveness in this area further exacerbates the emotional stresses
patients typically experience.
Deficit Reduction and Sequestration
As you work with your colleagues in Congress on deficit reduction,
budget, and appropriations issues please support the alopecia areata
community by actively pursuing meaningful funding increases for
critical medical research and healthcare programs. Our Nation's
investment in biomedical research, particularly through NIH, is an
engine that drives economic growth while improving health outcomes for
patients. NIH currently supports a modest, but integral research
portfolio in alopecia areata. The research funded through this
portfolio is conducted at academic health centers across the country,
which has a direct impact on local economic activity. Further, while
more work needs to be done, the commitment to NIH's alopecia areata
research portfolio over the years has greatly increased our scientific
understanding of the condition.
If Federal funding for alopecia areata research is substantially
reduced, the current effort to capitalize on recent advancements and
develop treatment options will face a serious setback. Ongoing research
projects will stall and critical new research projects will not be
initiated. In addition, reducing support for Federal biomedical
research efforts sends a powerful message to the next generation about
our country's lack of commitment to this field. Many talented young
people interested in biomedical research will seek other career paths.
The damage done now to the research training and career development
pipeline could last for decades and undermine this country's entire
biomedical research industry. It should also be noted that the next
generation of researchers will face increased competition for their
talents from foreign competitors who are investing in their biomedical
research infrastructure.
The alopecia areata community is very concerned that if healthcare
programs endure significant funding cuts, patients will see few
improvements in health and healthcare over the coming years.
Centers for Disease Control and Prevention
NAAF joins with other voluntary health organizations in requesting
that you support CDC by providing an allocation of $7.8 billion in
fiscal year 2014. This appropriation should include proportional
funding increases for the various centers and programs at CDC, most
notably the National Center for Chronic Disease Prevention and Health
Promotion (NCCDPHP).
The alopecia areata community could benefit greatly from an
analysis of prevalence, incidence, and associated demographic
information by CDC. Further, awareness programs could reach children
who have not been diagnosed with the condition and who are struggling
to understand what is going on with their bodies. Finally, healthcare
professionals could benefit from education and awareness activities
that would promote proper diagnosis of alopecia areata and appropriate
intervention. To initiate new programs that have the potential to
improve health outcomes for alopecia areata patients or patients
dealing with other condition, CDC would require a meaningful infusion
of additional resources. Without additional resources, CDC will be
unable to support current programs and activities and forced to forego
many emerging opportunities.
National Institutes of Health
NAAF joins with the broader public health community in requesting
that you support NIH by providing an allocation of $32 billion in
fiscal year 2014. This appropriation should include proportional
funding increases for the various NIH Institutes and Centers,
particularly NIAMS, the National Institute of Allergy and Infectious
Diseases (NIAID), the National Center for Advancing Translational
Research (NCATS), and the Office of the Director.
NIAMS supports the bulk of alopecia areata research currently
conducted through NIH. In order to capitalize on this research and
further improve our scientific understanding of the condition, NIH
requires additional resources to expand and advance the alopecia areata
research portfolio. NIH is presently foregoing meritorious research
opportunities and additional funding would allow more of these grants
applications to be funded.
NIAID.--Innovative new research activities initiated through NIAID
into alopecia areata would add-value to NIAID's current research
projects by leading to breakthroughs that could impact additional
autoimmune conditions.
NCATS.--Clinical and translational research are of tremendous
importance to the alopecia areata community. Expanding the Federal
commitment to NCATS would allow the Center to work more effectively
with FDA to facilitate the development of treatment options for
conditions that currently lack treatments with an FDA indication.
OD.--Due to the autoimmune and genetic components of alopecia
areata, research in this area has a significant cross-cutting value.
Innovative research activities initiated and coordinated by OD could
improve our understanding of both autoimmune conditions and conditions
with genetic components.
Thank you for your time and your consideration of these requests.
Please contact me if you have any questions or if you would like any
additional information.
______
Prepared Statement of the National Association of Community Health
Centers
Introduction
Chairman Harkin, Ranking Member Moran, and Distinguished members of
the subcommittee: My name is Dan Hawkins, and I am the Senior Vice
President for Public Policy and Research at the National Association of
Community Health Centers. On behalf of the American health center
community, including the more than 22 million patients served
nationwide by health centers, the 153,000 full-time health center
staff, and countless volunteer board members who serve our centers as
well as the National Association of Community Health Centers, we thank
you for this subcommittee's strong bipartisan support of health
centers. I also wish to thank you for the opportunity to submit
testimony for the committee to review as you craft the fiscal year 2014
Labor-Health and Human Services-Education and Related Agencies
Appropriations bill.
Health Centers--General Background
Health Centers are community-owned non-profit entities providing
primary medical, dental, and behavioral health care as well as pharmacy
and a variety of enabling and support services. Today, there are over
1,200 health centers operating at more than 9,000 urban and rural
locations nationwide serving as medical homes for more than 22 million
patients in all 50 States, including all of the States represented by
the members of this subcommittee.
By statute and mission, health centers are located in medically
underserved areas or serve a medically underserved population. This has
enabled health centers to become health care homes to the medically
underserved and our Nation's most vulnerable populations.
Health centers are also directed by patient -a majority board,
which helps to ensure they are responsive to each individual community
they serve, providing comprehensive primary care to all residents of
the community who seek their care, regardless of ability to pay or
insurance status and offer services on a sliding fee scale. This unique
model ensures that health center operations are locally-controlled and
responsive to each individual community's needs and, at the same time,
reduce barriers to accessing health care.
Approximately 39 percent of Health Center patients are covered by
Medicaid and another 36 percent are uninsured. In return, health
centers bring significant value to the Medicaid program, serving 15
percent of Medicaid patients for only 1 percent of total Medicaid
spending. Our unique model of care has enabled us to save the entire
health system, including the Government and taxpayers, approximately
$24 billion annually. Health Centers also reduce preventable
hospitalizations and Emergency Department (ED) use, as well as the need
for more expensive specialty care. The services provided at health
centers save $1,200 per patient per year compared to expenditures for
non-health center users. A Journal of Rural Health article entitled:
Presence of Community Health Center and Uninsured Emergency Department
Visit Rates in Rural Counties, written by Dr. George Rust et al, found
that counties with a community health center site had 25 percent fewer
uninsured ED visits. Without access to primary care, many people delay
seeking health care until they are seriously ill and require inpatient
hospitalization or care at an emergency room at a much higher cost.
Health centers can help reduce those unnecessary costs by serving as
health care homes for the underserved.\1\
In addition to reducing health care costs, health centers can also
serve as small businesses and economic drivers in their communities. In
2012, health centers employed 153,000 individuals and in 2009 generated
$20 billion in total economic benefits in poor urban and rural
communities.
Fiscal Year 2013 Funding Background
In fiscal year 2013, health centers are slated to receive a total
of $3.1 billion in total Federal funding. This includes $1.58 billion
in discretionary funding provided by the Health Resources and Services
Administration (HRSA) and $1.5 billion in mandatory funding for health
centers through the Affordable Care Act. This was a total increase of
$300 million from fiscal year 2012. A portion of this increase in
funding will go toward applications currently at HRSA. In January, HRSA
released the fiscal year 2013 Affordable Care Act New Access Point
(NAP) funding opportunity announcement. The NAP guidance solicited
applications to award $19 million to support 25 NAP awards. The
application process closed in April with approximately 400 applications
for the anticipated 25 awards, again demonstrating a significant need
and demand for access in many communities. We expect that the number of
applications would have been even higher if HRSA had announced a larger
anticipated amount of awards.
As you know, the President's fiscal year 2013 Health Resources and
Services Administration (HRSA) fiscal year 2013 budget proposal also
requested total funding of $3.1 billion. However, the Administration
proposed holding back $280 million of the total increase of $300
million. The Senate, recognizing the pressing need for primary care,
included language in the Consolidated and Further Continuing
Appropriations Act of 2013 ensuring the full $300 million be spent by
the end of fiscal year 2013. We want to thank the subcommittee for
their efforts and support for increased funding in fiscal year 2013
which will allow us to continue to work towards our shared goal of
expanding access to quality and affordable health care to all
Americans. We are grateful to our Senate supporters who worked to
include this critical provision.
To date, only the discretionary funding health center fiscal year
2013 spend plan has been released by HRSA. This plan reflects the
discretionary sequester reduction to the Health Center Program of $79
million and an additional transfer of $15 million from the program. We
await the second half of HRSA's fiscal year 2013 spend plan and hope it
will recognize the current and looming demand for increased access to
primary care.
Increasing and Overwhelming Demand for Access to Primary Care
Today, 60 million Americans lack regular access to primary care,
even as the Nation is preparing to provide health coverage for as many
as 30 million newly-insured Americans. Health centers stand ready to do
their part to meet these enormous challenges of providing a health care
home for these individuals. Even with the investment made in the Health
Center Program, barriers to care make it difficult for individuals to
access primary care and the demand for primary care far exceeds the
supply across the Nation, but health centers can play a role in solving
this crisis.
NACHC recently released a report entitled: Health Wanted, the State
of Unmet Need for Primary Health Care in America (``Health Wanted'')
which States that barriers to accessible care including affordability,
accessibility, and availability can diminish access to primary care.
Health Wanted demonstrated that when health centers are located in
medically underserved areas, using the unique health center model they
are able to overcome these barriers to care and are able to improve
health care outcomes as well as reduce health care costs. But the
demand for health centers continues to outpace growth. Health Wanted
also highlights the fact that at least 25 percent of U.S. counties in
greatest need do not have a health center.\2\
Health centers can meet these primary care demands with proper
resources. This means fully leveraging the funds available to health
centers to expand the number of health centers throughout the country.
We look forward to working with this subcommittee to ensure the promise
of access to primary care becomes a reality in all underserved
communities that currently lack it.
Fiscal Year 2014 Funding Request
The President's proposed fiscal year 2014 Health Resources and
Services Administration (HRSA) budget provides $1.58 billion in
discretionary funding for the Health Centers program. Together with the
$2.2 billion in fiscal year 2014 mandatory funding available for health
centers, health centers could receive a net increase of $700 million in
total programmatic funding for fiscal year 2014 equaling total funding
of $3.8 billion.
We strongly support the President's proposed funding level of $3.8
billion for health centers as it provides the opportunity for continued
growth of the Health Center program in the face of overwhelming need.
The $700 million increase could enable health centers to expand access
to care to more than 5 million new patients. Health Centers are looking
ahead as the demand for primary care is expected to soar as millions
receive health coverage for the first time, many of them living in the
very communities we serve. Health centers will become the health care
home for many of these new patients. We must create the capacity to
serve these patients. If primary care is not accessible in the
communities in which these people live, they will seek it out in
emergency departments and hospitals, often when they are sicker. This
will mean poorer health for these patients and much higher costs to the
system.
Health Centers are respectfully requesting a total of no less than
$3.8 billion in funding for the Health Center program and that the full
$700 million increase be spent in fiscal year 2014 to increase access
to primary care. We propose that the entire increase be used
immediately to provide for the expansion of care to 5 million new
patients and we look forward to working with you to ensure that this
subcommittee's funding priorities as well as the needs of health
centers across the country are communicated and realized as a part of
the fiscal year 2014 funding process.
Conclusion
We understand this subcommittee will have to make many difficult
budgetary decisions as you work within the funding limits set for the
fiscal year 2014 Labor-Health and Human Services-Education
Appropriations bill.
As the fiscal year 2014 appropriations process moves forward, we
urge you to keep in mind that without their local health center,
medically underserved communities and patients would often be without
any access to primary care. Health Centers are more than a safety net,
they have a demonstrated track record of improving the health and well-
being of their patients using a locally-tailored health care home model
designed to coordinate care and manage chronic disease at the same time
reducing unnecessary, avoidable and wasteful use of health resources.
Health centers have continually proven to be a worthwhile
investment by delivering high quality, affordable health care while
generating savings to the entire health system. We are extremely
grateful for your leadership and ask for the subcommittee's continued
support for the Health Center program.
We look forward to working with you and thank you for your
consideration.
---------------------------------------------------------------------------
\1\ Rust George, et al. ``Presence of a Community Health Center and
Uninsured Emergency Department Visit Rates in Rural Counties.'' Journal
of Rural Health Winter 2009 25(1):8-16.
\2\ NACHC and the Robert Graham Center. Help Wanted: The State of
Unmet Need for Primary Care in America. March 2012. www.nachc.com/
client//HealthWanted.pdf.
---------------------------------------------------------------------------
______
Prepared Statement of the National Association for State Community
Services Programs
Chairman Tom Harkin, Ranking Member Thad Cochran, members of the
committee, thank you for the opportunity to submit this testimony on
behalf of the National Association for State Community Services
Programs (NASCSP), the premier national association representing State
administrators of the Department of Health and Human Services'
Community Services Block Grant (CSBG) and State directors of the
Department of Energy's Low-Income Weatherization Assistance Program. We
thank Congress for its past support of CSBG and look forward to working
with you to build on the past success and to promote economic mobility
for all Americans in the years ahead. We appreciate your support and
need it now more than ever as more Americans face economic insecurity.
NASCSP seeks continued funding of $713.63 million for CSBG in fiscal
year 2014 in order to build on the successes of the CSBG Network. With
level funding, we believe that this already proven network, built on
local solutions to community issues, is the Nation's answer to the
economic plight that many Americans experience.
Why CSBG, Why Now
At a time when over 46 million Americans are living below the
Federal poverty level ($23,550 a year for a family of four), Americans
support effective public solutions to this pressing issue. Americans
need solutions like CSBG to bridge the gap between falling wages, job
shortages, and high costs of living to keep them from slipping further
into poverty. The strength of our Nation depends on the prosperity of
its citizens. CSBG can facilitate that prosperity and opportunity for
all Americans. The CSBG Network is a proven provider of anti-poverty
programs, supporting millions of low-income Americans on the path to
economic security and self-sufficiency. By taking a local approach, the
CSBG Network uses grassroots, innovative strategies to alleviate
poverty and provides a significant return on taxpayers' investment. In
2011, the CSBG Network leveraged $23.43 for every dollar of CSBG
funding.
Background of CSBG
CSBG is a federally-funded block grant that supports local anti-
poverty efforts through State-administered networks of more than 1,000
CAAs that work to eliminate poverty, revitalize low-income communities,
and empower low-income families to become self-sufficient and
economically secure. State administrators of CSBG are committed to
ending poverty and maintaining high accountability standards through
monitoring and technical assistance. As a conduit between the Federal
administration and agencies, States build public-private partnerships,
support innovation, and advance best practices to ensure the most
effective use of taxpayers' money. Local agencies utilize CSBG funds to
leverage additional resources and to eliminate poverty through a
variety of programs and services. While CAAs across the Nation address
similar issues, local needs determine unique approaches to addressing
them. Poverty, while a national problem, looks different in every
community. The CSBG Network strives to find local solutions to these
community issues by conducting community needs assessments to identify
with the needs, challenges, and resources in a local community. The
community needs assessments enables CAAs to provide the most effective
and efficient programs and services, which fall into nine service
categories outlined in the CSBG Act; employment, education, income
management, housing, emergency services, nutrition, linkages, self-
sufficiency, and health.
National data compiled by NASCSP shows that CSBG serves a broad
segment of low-income individuals and families. Data from fiscal year
2011 shows:
--There are 1,048 CAAs across the country, serving 99 percent of U.S.
counties.
--CSBG serves one out of every five people in America below the
Federal Poverty Guideline.
--The majority of clients are female (58 percent), white (59.1
percent), renters (60 percent), and between the ages of 24 to
54 years old (36 percent)--the second largest group was seniors
over the age of 55 (18 percent).
--Many of the families served were in ``severe poverty'' (32.3
percent), with incomes below 50 percent of the Federal Poverty
Guideline.
Successes of the CSBG Network
Highlights of the CSBG Network
--CSBG served 18.7 million Americans, including 7.6 million families
in fiscal year 2011,
--Over the past 5 years, the CSBG Network has:
--Helped over 645,000 people obtain a job,
--Addressed 18 million barriers to employment through helping
people acquire a job, obtain employment supports, and/or
receive job training,
--Expanded 21.5 million community opportunities or resources, which
helped to stimulate community and economic development, and
--Facilitated 17.7 million opportunities for infants, children,
youth, parents, and other adults through developmental or
enrichment programs.
Success Stories of the CSBG Network
Job Skills Training in Georgia Leads to Employment--Coastal
Plain Area Economic Opportunity Authority, Inc.
The Coastal Plain Area Economic Opportunity Authority, Inc.
(Coastal Plain) contributed to improving the employment outlook in
their community by creating programs that addressed the needs
identified through a community needs assessment the agency conducted in
2010. Coastal Plain found that the number of unemployed individuals in
their community increased significantly, and that many of those
unemployed individuals lacked the communication and the job-hunting
skills necessary to obtain work in a competitive job market. Coastal
Plain created a job-seeker training program that prepared participants
for a successful job search by teaching them how to write a
comprehensive resume and provided interview tactics to best convey
their experience and knowledge to potential employers.
Coastal Plain also created linkages with local businesses, which
donated interview clothing and supplies, and community organizations,
which offered job leads, career fairs, continuing education
opportunities, and online job search tools. The agency met childcare
needs by partnering with the State Department of Family and Children
Services to secure affordable childcare. In 2011, of the 470 people who
completed the program, 125 have found employment and the others
continue to receive assistance with their job searches. As a CAA,
Coastal Plains had the capacity to look at the needs of the community,
develop a program to meet those needs, and provide comprehensive
services to support job-seekers.
Helping Seniors Maintain Independent Living in Arizona--
Community Action Human Resources Agency
Living at home allows low-income seniors and disabled individuals
to maintain their independence, which improves their quality of life--
and saves taxpayers money. The Community Action Human Resources Agency
(CAHRA) created the Home Alone Safe Alone (HASA) program to provide
Pinal County seniors and disabled individuals with emergency
notification devices that allowed them to remain independent without
sacrificing their security and safety. This program is cost-effective
and successful because it combines CSBG funds together with volunteer
hours. CAHRA provides an Emergency Alert Pendant at no cost to income-
eligible participants thanks to a partnership with the United Way, who
covers the costs of the equipment. CSBG-funded CAHRA staff coordinates
the program, the partners, and trained volunteers who install all
safety hardware. Since the program began 9 years ago, CAHRA has helped
nearly 1,000 low-income seniors and disabled individuals remain safe,
secure, and independent through the HASA program, including providing
227 devices to needy seniors and disabled individuals in the 2010
program year.
Innovative Gardening in New York--Community Action of
Orleans and Genesee, Inc.
Recognizing that effective use of work release time for individuals
incarcerated by the criminal justice system provides benefits to both
the inmate and the local community, Community Action of Orleans and
Genesee, Inc. reached out to a local prison facility to make efficient
use of their land and inmate work release time through the Facility
Garden Project.
Through this collaboration, inmates plant, weed, and harvest fruits
and vegetables with facility staff. They distribute these fruits and
vegetables to the CAA and other nutrition programs. These local
organizations in turn provide 800 low-income families with both raw
food and prepared meals. The Facility Garden Project positively impacts
low-income families and partner agencies in all of Orleans County and
parts of Genesee County. In fiscal year 2010, agencies across the
service area helped distribute more than 3,000 pounds of assorted
vegetables to disabled seniors, soup kitchen customers, emergency food
customers, and low-income families.
This innovative partnership yields positive results for the prison,
community agencies, and low-income residents. CSBG funds were essential
in creating this collaboration by funding project planners, staff who
distributed the food to consumers, storage space for the vegetables,
and space for cooking classes.
Closing Statement
CAAs funded by the CSBG are an important link in the social safety
net. They comprise a nationwide, accountable network that has
experience in developing innovative, high-impact anti-poverty
strategies and programs that are based on local needs. The CSBG Network
uses resources to leverage more than $23 for each dollar of CSBG funds
invested. CSBG bridges the gap between falling wages, job shortages,
and high costs of living to keep working Americans from slipping
further into poverty. CSBG already serves one out of every five people
in America below the Federal Poverty Guideline. Strengthening CSBG is
an effective, efficient way to meet our Nation's need for a strong and
successful effort to bring economic opportunity to every American.
______
Prepared Statement of the National Association of County and City
Health Officials
FISCAL YEAR 2014 FUNDING FOR PROGRAMS AT THE CENTERS FOR DISEASE CONTROL
AND PREVENTION
[$ in millions]
------------------------------------------------------------------------
Fiscal NACCHO
Fiscal Fiscal Year Fiscal
Program Year Year 2014 Year
2012 2013 Pres. 2014
Budget Request
------------------------------------------------------------------------
Prevention and Public Health Fund...... 1,000 949 1,000 1,000
CDC Public Health Emergency 666 608 658 715
Preparedness Grants...................
CDC Community Transformation Grants.... 226 146 146 280
CDC Section 317 Immunization Program... 642 528 581 642
CDC National Public Health Improvement 40 37 40 40
Initiative............................
CDC Food Safety........................ 27 26 49 49
------------------------------------------------------------------------
The National Association of County and City Health Officials is the
voice of the 2,800 local health departments across the country. These
city, county, metropolitan, district, and tribal departments work every
day to ensure the safety of the water we drink, the food we eat, and
the air we breathe.
More than 180,000 health department staff across the country are
responsible for programs that make it easier for people to be healthy.
The Nation's current financial challenges are compounded by those in
State and local governments further diminishing the ability of local
health departments to address community health and safety needs.
Repeated rounds of budget cuts and lay-offs continue to erode local
health department capacity. Since 2008, local and State health
departments have scaled back and eliminated programs that protect the
public's health and cut more than 50,000 jobs. Sequester cuts will add
to pressures on local health departments as Federal cuts make their way
down to the State and local level.
To help protect the public's health, we urge the subcommittee to
consider the following fiscal year 2014 funding request for programs at
the Department of Health and Human Services (HHS) and Centers for
Disease Control and Prevention (CDC):
Prevention and Public Health Fund (HHS)
NACCHO Request: $1 billion
Fiscal Year 2014 President's Budget: $1 billion
Fiscal Year 2013: $949 million
The Prevention and Public Health Fund (PPHF) is a dedicated Federal
investment in programs that prevent disease at the community level. The
PPHF supports:
--Early and rapid detection of diseases and injury;
--Continuous quality improvement in public health practice;
--Community-based initiatives to stem the epidemic of preventable
disease;
--Immunizations and innovative chronic disease grants to prevent and
reduce the rising cost of health care for the leading causes of
death; and
--Local and State public health workforce training.
In fiscal year 2013 the Obama Administration diverted more than
$300 million from the PPHF for Navigator grants and health reform
implementation. NACCHO urges Congress to act to outline an allocation
for the $1 billion available from the PPHF in fiscal year 2014 that
adheres to its statutory purpose to prevent disease and promote public
health.
Public Health Emergency Preparedness
Center: Center for Public Health Preparedness and Response
Funding Line: State and Local Preparedness and Response Capability
Sub-line: Public Health Emergency Preparedness Cooperative Agreements
(PHEP)
NACCHO request: $715 million
Fiscal Year 2014 President's Budget: $658 million (fiscal year 2014
President's Budget includes PHEP grants in State and Local
Preparedness and Response Capability)
Fiscal Year 2013: $608 million
The Public Health Emergency Preparedness (PHEP) grant program
protects communities by strengthening local and State public health
department capacity to effectively respond to public health emergencies
including terrorist threats, infectious disease outbreaks, natural
disasters, and biological, chemical, nuclear, and radiological
emergencies. Local and State health departments work with Federal
officials, law enforcement, emergency management, health care,
employers, schools, and religious groups to plan, train, and prepare
for emergencies so that communities are ready. Local health departments
protect the public in the following ways:
--They investigate, detect, and contain outbreaks of disease
--They educate the public about how to protect themselves; such as by
wearing masks, drinking bottled water, or staying indoors.
--They dispense medications or vaccinations to slow the spread of
illness.
The PHEP program has lost more than a quarter of its funding since
fiscal year 2004. Sustained funding is essential to make sure that
communities are protected.
Chronic Disease Prevention
Center: Center for Chronic Disease Prevention and Health Promotion
Funding Line: Community Transformation Grants (CTG)
NACCHO Request: $280 million
Fiscal Year 2014 President's Budget: $146 million
Fiscal Year 2013: $146 million
The CTG program provides resources for local communities to address
heart attacks, strokes, cancer, diabetes, and other chronic diseases
which contribute to the soaring cost of health care. Risk factors like
obesity and smoking often lead to these diseases and conditions, which
are responsible for 75 percent of all health care spending--96 cents
per dollar for Medicare and 83 cents per dollar for Medicaid. CTG
grantees are charged with a 5 percent reduction in 5 years of death and
disability due to tobacco use, heart disease and stroke and the rate of
obesity through nutrition and physical activity. The program seeks to
improve the health of about 130 million Americans.
Infectious Disease Prevention
317 Immunization Program
Center: National Center for Immunization and Respiratory Diseases
Funding Line: 317 Immunization Program
NACCHO Request: $642 million
Fiscal Year 2014 President's Budget: $581 million
Fiscal Year 2013: $528 million
Local health departments vaccinate people in their communities,
providing one of the most successful and cost-effective ways to prevent
disease and death. Local health departments use innovative methods to
increase vaccination rates, including ``Vote and Vax'' activities where
voters receive immunizations at their polling places and conducting
outreach to families to make sure kids are immunized and ready to
attend school.
Local health departments also have a responsibility for ensuring
that the most vulnerable people in their communities receive protection
from vaccines. The Section 317 Immunization Program provides funds to
50 States, six large cities and eight territories for vaccine purchase
for at-need populations and immunization program operations at the
local, State, and national levels. Local health departments utilize
these funds to work with public and private physicians to assure
effective immunization practices, including proper storage and delivery
of vaccines. Through the use of vaccine registries administered by
health departments, savings are achieved by avoiding duplicative
vaccinations, improved inventory management, and by identifying gaps in
immunizations in persons and groups.
Sustained funding for the Section 317 is critical to protecting
Americans for preventable diseases. NACCHO supports the President's
request of $25 million within 317 funding to support State and local
health departments to develop billing and other infrastructure that is
needed to be reimbursed for clinical services.
Public Health Performance Improvement
Center: Center for Public Health Leadership and Support
Funding Line: National Public Health Improvement Initiative
NACCHO Request: $40 million
Fiscal Year 2014 President's Budget: $40 million
Fiscal Year 2013: $37 million
The National Public Health Improvement Initiative provides funding
to 74 State, tribal, local and territorial health departments to make
changes and enhancements that increase the impact of public health
services. NPHII strengthens health departments by providing staff,
training, tools, and capacity-building assistance dedicated to
establishing performance management and evidence-based practices for
improved service delivery and better health outcomes.
Food Safety
Center: Center for Emerging and Zoonotic Infectious Diseases
Funding Line: Food Safety
NACCHO Request: $49 million
Fiscal Year 2014 President's Budget: $49 million
Fiscal Year 2013: $26 million
Foodborne illness affects 48 million Americans every year,
resulting in 128,000 hospitalizations and 3,000 deaths. CDC's Food
Safety program seeks to ensure food safety through surveillance and
outbreak response. Local and State health departments are an essential
part of the process that ensures that food is safe to eat at home, at
community events, in restaurants, and in schools. Funding is needed to
advance implementation of the Food Safety Modernization Act by
enhancing and integrating disease surveillance, improving outbreak and
response timeliness and helping address deficits in local capacity to
prevent and stop illness.
As the subcommittee drafts the fiscal year 2014 Labor-HHS-Education
Appropriations bill, NACCHO urges consideration of these
recommendations for programs critical to protecting the public's
health.
______
Prepared Statement of the National Congress of American Indians
Introduction
The National Congress of American Indians (NCAI) is the largest and
oldest representative organization of American Indian and Alaska Native
tribal governments. NCAI represents the broad interests of tribes and
their citizens to advance, and promote the advancement, of tribal
Sovereignty and Self-Determination. NCAI respectfully submits this
testimony on the Corporation for Public Broadcasting (CPB) and programs
in the Department of Labor.
CORPORATION FOR PUBLIC BROADCASTING
In the CPB, NCAI supports an advanced fiscal year 2015
appropriation of $5 million for American Indian and Alaska Native radio
stations. This $5 million appropriation would come out of the fiscal
year 2014 advanced appropriation of $445 million for the overall CPB
budget.
For more than 30 years, decisions on the amount of Federal support
for public broadcasting have been made 2 years ahead of the fiscal year
in which the funding is allocated. In other words, Congress approves
the fiscal year 2015 funding level for CPB during the fiscal year 2013
appropriations process. Thus, where the overall budget for the CPB in
fiscal year 2014 was $445 million, Indian Country requests an advance
appropriation of $5 million to fund American Indian and Alaska Native
radio stations for fiscal year 2015.
Since 2011, the Native radio system has grown from 33 stations to
53 stations to provide service to more of Indian Country. CPB funding
supports 30 of 53 Native radio stations, which collectively reach more
than 8 percent of the American Indian and Alaska Native populations
with free radio programming. These stations are funded through a
variety of sources, including: individual donors, local businesses,
CPB, tribal governments, and grants. Native-owned and operated radio
stations are a model of local community service radio, serve as the
primary and most consistent sole service providers of public safety
information and cultural and linguistic preservation, and stand as an
invaluable outlet for local news in tribal communities. Native radio
stations employ at least 1,000 broadcasters, engineers, station staff,
consultants, and other local community members.
Additionally, the Public Broadcasting Act directs CPB to utilize 6
percent of the appropriation for ``projects and activities that will
enhance public broadcasting.'' This funding supports the research,
planning, professional development, and industry consultations that
guide CPB's decisionmaking in other budget categories. Native Public
Media and Koahnic Broadcast Corporation are capable to provide valued
services to develop and maintain the Native radio system and are funded
from the 6 percent allocation (currently amounting to $1 million over 2
years). Native Public Media has assisted in filing for 51 new stations
and secured construction permits for 38 of these new stations.
Native Public Media also provides education and training for tribal
broadcasters in digital literacy, journalism, and community-based
strategies that will broaden the impact of the Native radio system in
unserved tribal communities across the United States. Koahnic Broadcast
Corporation produces Native programming and content for radio broadcast
and oversees Native Voice One--the distribution mechanism that utilizes
satellite technology to deliver programming and content to Native radio
stations and other affiliates across the United States.
Native public radio stations still exist as one of the primary
sources of public information on tribal lands, and represent
cornerstones of tribal efforts for information dissemination. Much of
Indian Country remains disconnected from vital telecommunications
services, radio should not be counted among them. Radio has always
existed as a key component of public information and 53 tribal radio
stations among this country's 566 federally recognized tribes
illustrates the need for these services in Indian Country. This
communications tool, though antiquated it may seem compared to other
technologies available today, provides services of immense cultural
significance.
DEPARTMENT OF LABOR
Restore the YouthBuild Program funding to a minimum of $102.5
million, restore the rural and tribal set-aside in the YouthBuild
program, and reinstate a dedicated 10 percent rural and tribal set-
aside of at least $10.25 million. The YouthBuild program is a workforce
development program that provides significant academic and occupational
skills training and leadership development to youth ages 16-24.
YouthBuild provides services to approximately 7,000 youth annually by
re-engaging them in innovative alternative education programs that
provide individualized instruction as they work towards earning either
a GED or high school diploma, as well as fosters work skills so that
youth can be competitive candidates in the job market. Youth
participate in public construction projects while attending classes to
obtain their high school diploma or GED.
YouthBuild reports that since it was established as a Federal
program in 1992, 120,000 YouthBuild students have built 22,000 units of
affordable housing in low-income communities in 46 States and the
District of Columbia. When the program was transferred from the
Department of Housing and Urban Development to the Department of Labor
in 2007, the 10 percent set-aside for rural and tribal programs was
eliminated. Additionally, in 2011, due to a 28 percent cut in
YouthBuild appropriations, over 18,000 applicants to YouthBuild
programs were turned away.\1\
The YouthBuild program recruits youth that have been adjudicated,
aged out of foster care, dropped out of high school, and others at risk
of not having access to workforce training. In 2010, 4,252 youth
participated in the program and had a completion rate of 78 percent.
According to YouthBuild, 60 percent of those that completed the program
were placed in jobs or further education.\2\ There are a number of
tribal YouthBuild programs in several States, and at least 4 percent of
YouthBuild participants are Native. Given the recent reduction in
tribal YouthBuild programs, significant unemployment and housing
challenges in Indian Country, and the growing Native youth population,
it is essential that the 10 percent rural and tribal set-aside be
restored. 42 percent of the total American Indian and Alaska Native
population is under 25 \3\, and these workforce development
opportunities are essential in preparing tribal youth for employment
and self-sufficiency.
Fund the Department of Labor's Indian and Native American Program
(INAP) at a minimum of $60.5 million. Fund the Native American
Employment and Training Council at $125,000 from non-INAP resources.
Reducing the education and employment disparity between Native people
and other groups requires a concentrated effort that provides specific
assistance to enhance education and employment opportunities, to create
pathways to careers and skilled employment, and to secure a place for
Native people within the Nation's middle class. The Workforce
Investment Act (WIA) Section 166 program serves the training and
employment needs of over 38,000 American Indians and Alaska Natives via
a network of 175 grantees through the Comprehensive Service Program
(Adult) and Supplemental Youth Service Program (Youth), and the Indian
Employment and Training and Related Services Demonstration Act of 1992,
Public Law 102-477. Furthermore, the number of American Indians and
Alaska Natives served through WIA does not fully capture the impact it
has in Indian Country, as there are many more served by grantees that
leverage WIA funding, along with other similar federally funded
employment and training programs, through PL 102-477.
Any decrease in funding along with the looming discretionary cuts
will be devastating and severely hamper labor progress in Indian
Country. According to the Census, the average unemployment rate on
reservations dropped more than 3 percentage points since 2000 \4\, but
more still needs to be done as American Indians and Alaska Natives
still lag significantly behind. With the average unemployment rate in
Indian Country cited up to 17 percent \5\ and an average joblessness
rate of nearly 50 percent \6\, the WIA Section 166 program is vital to
helping reverse these trends.
Because the WIA Section 166 program is the only Federal employment
and job training program that serves American Indians and Alaska
Natives who reside both on and off reservations, it is imperative that
its funding be maintained. For Native citizens living on remote
reservations or in Alaska Native villages, it can be difficult to
access the State and local workforce systems. In these areas, the WIA
Section 166 program is the sole employment and training provider.
The Workforce Investment Act (the Act) has been up for
reauthorization since 2003, and over this ten-year period, the Act has
not accounted for the population growth of tribal communities, nor the
economic environment that has drastically changed; according to the
2010 Census, the population of tribal communities has grown 27 percent
since the year 2000, compared to 9 percent for the general
population.\7\ The Act authorizes the INAP to be funded at ``not less
than $55 million,'' but Section 166 is currently funded at
approximately $47 million. The Act also authorizes the Native American
Employment and Training Council to advise the Secretary on the
operation and administration of INAP, but is funded through the already
strained and underfunded budget intended for INAP grantees. Since the
current INAP funding is already below $55 million, the Secretary should
use other streams of funding to support its advisory council. Without
an increase in funding and given the large increase in the American
Indian and Alaska Native population, not enough tribes are able to
benefit from the support and training activities for employment
opportunities in Indian Country.
---------------------------------------------------------------------------
\1\ See https://youthbuild.org/research.
\2\ Ibid.
\3\ U.S. Census Bureau, 2010 Census, Summary File 1.
\4\ US Census Bureau. Census 2000 Summary File 4, 2006-2010, 2009-
2011 American Community Survey.
\5\ U.S. Census. 2011 American Community Survey.
\6\ U.S. Department of Interior. Bureau of Indian Affairs. 2005
American Indian Labor Force Report.
\7\ U.S. Census Bureau, 2010 Census, Summary File 1.
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DEPARTMENT OF EDUCATION PROGRAMS
Introduction
The National Congress of American Indians (NCAI) is the oldest and
largest American Indian organization in the United States. Tribal
leaders created NCAI in 1944 as a response to termination and
assimilation policies that threatened the existence of American Indian
and Alaska Native tribes. Since then, NCAI has fought to preserve the
treaty rights and sovereign status of tribal governments, while also
ensuring that Native people may fully participate in the political
system. As the most representative organization of American Indian
tribes, NCAI serves the broad interests of tribal governments across
the Nation.
Investing in the education of American Indian and Alaska Native
students is not only one most of the most important cornerstones of the
Federal trust responsibility to tribes, but is also critical to
economic revitalization for both Indian Country and the Nation as a
whole. President Obama has repeatedly stressed that improving American
education is an ``economic imperative,'' and for tribes, the stakes are
just as high, if not higher. Education provides tribal economies with a
more highly-skilled workforce while also directly spurring economic
development and job creation. The profound value of education for
Native nations extends beyond just economics, however. Education drives
personal advancement and wellness, which in turn improves social
welfare and empowers communities--elements that are essential to
maintaining tribes' cultural vitality and to protecting and advancing
tribal sovereignty.
Despite the enormous potential of education for transforming tribal
communities, Native education is in a state of emergency. American
Indian and Alaska Native students lag far behind their peers on every
educational indicator, from academic achievement to high school and
college graduation rates. For example, in 2011, only 18 percent of
Native fourth graders and 22 percent of Native eighth graders scored
proficient or advanced in reading, and only 22 percent of Native fourth
graders and 17 percent of Native eighth graders scored proficient or
advanced in math.\8\ The crisis of Indian education is perhaps most
apparent in the Native high school dropout rate, which is not only one
of the highest in the country, but is also above 50 percent in many of
the States with high Native populations.\9\
To address this urgent situation and provide tribal nations with
the critical foundation for economic success, the Federal Government
must live up to its trust responsibility by providing adequate support
for Native education. The requests below detail the minimum
appropriations needed to maintain a system that is struggling and
underfunded. NCAI also fully supports the recommendations of the
American Indian Higher Education Consortium for tribal colleges.
Education Funding Requests For The Fiscal Year 2014 Labor-HHS-Education
Bill
State-Tribal Education Partnership (STEP) Program
-- Provide $5 million for the State-Tribal Education
Partnership Program.
Congress appropriated roughly $2 million dollars for the STEP
program to five participating tribes in fiscal year 2012 and fiscal
year 2013 under the Tribal Education Department appropriations' line
that is administered by the Department of Education. In order for this
program to continue to succeed and thrive, it must receive its own line
of appropriations in fiscal year 2014. Collaboration between tribal
education agencies and State educational agencies is crucial to
developing the tribal capacity to assume the roles, responsibilities,
and accountability of Native education departments and increasing self-
governance over Native education.
Impact Aid
-- Provide $1.395 billion for Impact Aid, Title VIII of the
Elementary and Secondary Education Act (ESEA).
Impact Aid provides direct payments to public school districts as
reimbursement for the loss of traditional property taxes due to a
Federal presence or activity, including the existence of an Indian
reservation. With nearly 93 percent of Native students enrolling in
public schools, Impact Aid provides essential funding for schools
serving Native students. Therefore, funding for Impact Aid must not be
less than this requested amount. Furthermore, Impact Aid should be
converted to a forward-funded program to eliminate the need for cost
transfers and other funding issues at a later date.
Title VII (Indian Education Formula Grants)
-- Provide $198 million for Title VII of the ESEA.
This grant funding is designed to supplement the regular school
program and assist Native students so they have the opportunity to
achieve the same educational standards and attain equity with their
non-Native peers. Title VII provides funds to school divisions to
support American Indian, Alaska Native, and Native Hawaiian students in
meeting State standards. Furthermore, Title VII funds support early-
childhood and family programs, academic enrichment programs, curriculum
development, professional development, and culturally-related
activities.
Alaska Native Education Equity Assistance Program
-- Provide $35 million for Title VII, Part C of the ESEA.
This assistance program funds the development of curricula and
education programs that address the unique educational needs of Alaska
Native students, as well as the development and operation of student
enrichment programs in science and mathematics. This funding is crucial
to closing the gap between Alaska Native students and their non-Native
peers. Other eligible activities include professional development for
educators, activities carried out through Even Start programs and Head
Start programs, family literacy services, and dropout prevention
programs.
Native Hawaiian Education Program
-- Provide $35 million for Title VII, Part B of the ESEA.
This program funds the development of curricula and education
programs that address the education needs of Native Hawaiian students
to help bring equity to this Native population. Where Native Hawaiians
once had a very high rate of literacy, today Native Hawaiian
educational attainment lags behind the general population. The Native
Hawaiian Education program empowers innovative culturally appropriate
programs to enhance the quality of education for Native Hawaiians. When
establishing the Native Hawaiian Education Program, Congress
acknowledged the trust relationship between the Native Hawaiian people
and the United States. Additionally, specific educational disparities
were identified, and targeted for improvement. New grantees in fiscal
year 2011 alone are estimated to provide educational programs to over
30,000 Native Hawaiian children and families. These programs strengthen
the Native Hawaiian culture and improve educational attainment, both of
which are correlated with positive economic outcomes.
Tribal Education Departments
-- Provide $5 million to fund Tribal Education Departments.
Five million dollars should be appropriated to the Department of
Education to support tribal education departments (TEDs). This funding
assists TEDs, which are uniquely situated at the local level to
implement innovative education programs that improve Native education.
Because they are administered by tribes, TEDs are best equipped to
deliver education programs tailored to improve education parity for
Native students. TEDs would use this much-needed funding to develop
academic standards, assess student progress, and create math and
science programs that require high academic standards for students in
tribal, public, and Bureau of Indian Education schools. Tribes
exercising self-governance over their citizens' education have been
very successful because they better understand the circumstances of
their populations and can develop initiatives that meet local needs.
Adequately funding TEDs would create the most return on Federal dollars
spent.
Vocational Rehabilitation Services Projects for American
Indians with Disabilities
-- Increase Vocational Rehabilitation Services Projects to $67
million and create a line-item of $5 million for providing
outreach to tribal recipients.
According to the Centers for Disease Control and Prevention,
approximately 30 percent of American Indian and Alaska Native adults
have a disability--the highest rate of any other population in the
Nation.\10\ Of those American Indian and Alaska Native adults with a
disability, 51 percent reported having fair or poor health.\11\ A
number of issues contribute to this troubling reality, including high
incidences of diabetes, heart disease, and preventable accidents. As a
result, tribes have an extraordinary need to support their disabled
citizens in improving their health and becoming self-sufficient.
Despite this need, however, tribes have had limited access to funding
for vocational rehabilitation and job training compared to States. An
increase in the Vocational Rehabilitation Services Projects to $67
million would begin to put tribes on par with State governments and
better equip tribes to provide supports to their disabled citizens.
---------------------------------------------------------------------------
\8\ National Indian Education Study 2011, NCES 2012-466. National
Center for Education Statistics, Institute of Education Sciences,
United States Department of Education.
\9\ School Year 2010-2011 Four-Year Regulatory Adjusted Cohort
Graduation Rates, Department of Education.
\10\ Centers for Disease Control and Prevention. (2011).
``Disability and Health''. Retrieved on January 2, 2013, from http://
www.cdc.gov/ncbddd/disabilityandhealth/data.html.
\11\ Ibid.
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DEPARTMENT OF HEALTH AND HUMAN SERVICES
Introduction
The National Congress of American Indians (NCAI) is the oldest and
largest American Indian organization in the United States. Tribal
governments cannot survive and prosper without healthy and strong
tribal citizens. The United States Congress has shown a commitment to
over 300 treaties and the Federal trust responsibility through
appropriations to programs that support the health and wellness of
tribal communities. However, American Indians and Alaska Natives
continue to experience chronically high rates of foster care, suicide,
diabetes, and obesity.
Each year NCAI works with national and regional Indian
organizations to develop budget recommendations and requests for each
area of the Federal budget. For this subcommittee, NCAI provides the
recommendations below for some Federal agencies under the Department of
Health and Human Services (HHS) and fully supports the recommendations
of the National Indian Child Welfare Association, National Indian
Health Board, and National Indian Education Association.
Substance Abuse and Mental Health Services Administration (SAMHSA)
Provide $15 million to fund Substance Abuse and Mental Health
Services Administration (SAMHSA) for Behavioral Health.--This SAMHSA
grant program has been authorized to award grants to Indian health
programs to provide the following services: prevention or treatment of
drug use or alcohol abuse, promotion of mental health, or treatment
services for mental illness. To date, these funds have never been
appropriated. An appropriation of $15 million would provide support to
Indian health programs to meet the critical substance abuse and mental
health needs of their citizens.
Support SAMHSA's Behavioral Health Tribal Prevention Grant program
at $40 million in fiscal year 2014.--The Behavioral Health Tribal
Prevention Grant will support behavioral health services that promote
overall mental and emotion health, in particular substance abuse
prevention and suicide prevention services. If funded, the grant
program would be the only source of Federal substance abuse and suicide
prevention funding exclusively available to tribes.
Provide a $6 million tribal set-aside for American Indian suicide
prevention programs under the Garrett Lee Smith Act.--Suicide has
reached epidemic proportions in some tribal communities. The Garrett
Lee Smith Memorial Act of 2004 is the first Federal legislation to
provide specific funding for youth suicide prevention programs,
authorizing $82 million in grants over 3 years through SAMHSA.
Currently, tribes must compete with other institutions to access these
funds. To assist tribal communities in accessing these funds, a line
item for tribal-specific resources is necessary.
Administration for Children and Families
Provide full funding for Head Start and Indian Head Start.--Head
Start has been and continues to play an instrumental role in Native
education. This vital program combines education, health, and family
services to model traditional Native education, which accounts for its
success rate. However, current funding dollars provide less for Native
populations as inflation and fiscal constraints increase. It is now
conventional wisdom that there is a return of at least $7 for every
single dollar invested in Head Start.\12\ Therefore, Congress should
fully fund Head Start and Indian Head Start to ensure this highly
successful program serves more Native people.
Provide $10 million for Esther Martinez Program Native language
preservation grants.--Native language grant programs are essential to
revitalizing Native languages and cultures, many of which are at risk
of disappearing in the next decades. With adequate funding, Esther
Martinez Program Grants support and strengthen Native American language
immersion programs. In addition to protecting Native languages, these
immersion programs have been shown to promote higher academic success
for participating students in comparison to their Native peers who do
not participate. This is critical for our Native youth, who have high
school graduation rates far lower than their non-Native peers.
Administration on Aging
Provide $30 million for Parts A (Grants for Native Americans) and B
(Grants for Native Hawaiians) of the Older Americans Act.--Programs
under Title VI of the Older Americans Act are the primary vehicle for
providing nutrition and other direct supportive services to American
Indian, Alaska Native, and Native Hawaiian elders. Approximately two-
thirds of the Part A and Part B grants to tribes or consortia of tribes
are for less than $100,000. This funding level is expected to provide
services for a minimum of 50 elders for an entire year. Yet, those
tribes receiving $100,000 typically serve between 200 and 300 elders.
As such, many tribes are unable to meet the five-days-a-week meal
requirement because of insufficient funding and are serving congregate
meals only two or three days per week. Some Title VI programs are
forced to close for a number of days each week, unable to provide basic
services such as transportation, information and referral services,
legal assistance, ombudsman, respite or adult day care, home visits,
homemaker services, or home health aide services. Rapidly increasing
transportation costs also severely limit Title VI service providers'
ability to deliver meals and related supportive services to home-bound
Native elders at the current funding level. This funding should be
significantly increased so that Native elders receive the care that
they deserve.
Provide $8.3 million for the Native American Caregiver Support
Program administered by the Administration on Aging and create a line-
item for training for tribal recipients.--The Native American Caregiver
Support Program under Part C of the OAA assists American Indian, Alaska
Native, and Native Hawaiian families caring for older relatives with
chronic illnesses. The grant program offers many services that meet
caregivers' needs, including information and outreach, access
assistance, individual counseling, support groups and training, respite
care, and other supplemental services. However, this program cannot be
effective if it is not adequately funded. It should be funded at $8.3
million, with sufficient resources also allocated to address
historically unmet tribal training needs.
Create a tribal set-aside of $2 million under Subtitle B of Title
VII.--Subtitle B of Title VII of the Older Americans Act authorizes a
program for tribes, public agencies, or non-profit organizations
serving Native elders to assist in prioritizing issues concerning elder
rights and to carry out related activities. While States have been
funded at more than $20 million per year under this program, tribes
have never received appropriations for this purpose. Further, tribes
have no additional source of mandatory Federal funding for elder
protection activities. As such, a $2 million tribal set-aside should be
created under Subtitle B to ensure that tribes have access to such
funds at a comparable level to States.
Provide $3 million for national minority aging organizations to
build the capacity of community-based organizations to better serve
Native seniors.--Language and cultural barriers severely restrict
Native elder access to Federal programs for which they are eligible.
Typically, these senior Americans have limited access to and
participation in programs such as Social Security, Medicare, and
Medicaid. Funding is needed to build capacity for tribal, minority, and
other community-based aging organizations to serve Native elders and
enroll them in programs to which they are entitled. These efforts could
include training tribal staff on expanding Native elders' access to
Medicare, Medicaid, housing, congregate meals, and veteran benefits.
Efforts could also include working with tribal leaders to leverage
existing funds and programs to sustain support for elders. This funding
is essential to strengthening local organizations in serving seniors.
National Institutes of Health
Though NCAI is not requesting additional funding for the National
Institutes of Health (NIH), we would like to protect current funding
levels and highlight the significant negative impact the sequestration
will have on many tribal governments and associate research and
development projects. Of the major research institutes, the NIH stands
to take the greatest hit in terms of total dollars lost at nearly $2.4
billion. This could severely constrain research on diseases that cost
tribal communities millions of dollars each year to treat, including:
diabetes, cancer, and heart disease, amongst so many others. It will
also affect the number of grants NIH awards each year, which may affect
Native-focused funding mechanisms like the Native American Research
Centers for Health (NARCH) funded by NIH. NCAI requests that the
subcommittee work to protect research for and with tribal communities
as these projects continue to inform policymaking decisions and
highlight best practices for tribal programs and initiatives.
CONCLUSION
Thank you for your consideration of this testimony. For more
information, please contact Amber Ebarb, NCAI Budget and Policy
Analyst, at [email protected], Katie Jones, NCAI Legislative Associate,
at [email protected], Brian Howard, NCAI Legislative Associate, at
[email protected], Gerald Kaquatosh, NCAI fellow at [email protected],
and Terra Branson, NCAI Legislative Associate, at [email protected].
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\12\ Mitra, D. (June 2011). ``Pennsylvania's best investment: The
social and economic benefits of public education.'' Philadelphia, PA:
Education Law Center. Retrieved on January 8, 2013, from http://
www.elc-pa.org/BestInvestment_Full_Report_6.27.11.pdf.
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______
Prepared Statement of the National Council For Diversity in the Health
Professions
SUMMARY OF FISCAL YEAR 2014 RECOMMENDATIONS
_______________________________________________________________________
1) $300 million for the Title VII Health Professions Training
Programs, including:
--$33.6 million for the Minority Centers of Excellence.
--$35.6 million for the Health Careers Opportunity Program.
_______________________________________________________________________
Mr. Chairman and members of the subcommittee, thank you for the
opportunity to present my views before you today. I am Dr. Wanda
Lipscomb, President of the National Council for Diversity in the Health
Professions (NCDHP) and the Director of the Center of Excellence for
Culture Diversity in Medical Education at Michigan State University.
NCDHP, established in 2006, is a consortium of our Nation's majority
and minority institutions that once house the Health Resources and
Services (HRSA) Minority Centers of Excellence (COE) and Health Careers
Opportunities Programs (HCOP) when there was more funding. These
institutions are committed to diversity in the health professions. In
my professional life, I have seen firsthand the importance of health
professions institutions promoting diversity and the Title VII Health
Professions Training programs.
Mr. Chairman, time and time again, you have encouraged your
colleagues and the rest of us to take a look at our Nation and evaluate
our needs over the next 10 years. I want to say that minority health
professional institutions and the Title VII Health Professionals
Training programs address a critical national need. Persistent and
severe staffing shortages exist in a number of the health professions,
and chronic shortages exist for all of the health professions in our
Nation's most medically underserved communities. Furthermore, our
Nation's health professions workforce does not accurately reflect the
racial composition of our population. For example while blacks
represent approximately 15 percent of the U.S. population, only 2-3
percent of the Nation's health professions workforce is black. Mr.
Chairman, I would like to share with you how your committee can help
NCDHP continue our efforts to help provide quality health professionals
and close our Nation's health disparity gap.
There is a well established link between health disparities and a
lack of access to competent healthcare in medically underserved areas.
As a result, it is imperative that the Federal Government continue its
commitment to minority health profession institutions and minority
health professional training programs to continue to produce healthcare
professionals committed to addressing this unmet need.
An October 2006 study by the Health Resources and Services
Administration (HRSA), entitled ``The Rationale for Diversity in the
Health Professions: A Review of the Evidence'' found that minority
health professionals serve minority and other medically underserved
populations at higher rates than non-minority professionals. The report
also showed that; minority populations tend to receive better care from
practitioners who represent their own race or ethnicity, and non-
English speaking patients experience better care, greater
comprehension, and greater likelihood of keeping follow-up appointments
when they see a practitioner who speaks their language. Studies have
also demonstrated that when minorities are trained in minority health
profession institutions, they are significantly more likely to: 1)
serve in rural and urban medically underserved areas, 2) provide care
for minorities and 3) treat low-income patients.
As you are aware, Title VII Health Professions Training programs
are focused on improving the quality, geographic distribution and
diversity of the healthcare workforce in order to continue eliminating
disparities in our Nation's healthcare system. These programs provide
training for students to practice in underserved areas, cultivate
interactions with faculty role models who serve in underserved areas,
and provide placement and recruitment services to encourage students to
work in these areas. Health professionals who spend part of their
training providing care for the underserved are up to 10 times more
likely to practice in underserved areas after graduation or program
completion.
Institutions that cultivate minority health professionals, like the
NCDHP members, have been particularly hard-hit as a result of the cuts
to the Title VII Health Profession Training programs in fiscal year
2006, fiscal year 2007, and fiscal year 2008. Given their historic
mission to provide academic opportunities for minority and financially
disadvantaged students, and healthcare to minority and financially
disadvantaged patients, minority health professions institutions
operate on narrow margins. The cuts to the Title VII Health Professions
Training programs amount to a loss of core funding at these
institutions and have been financially devastating. We have been
pleased to see efforts to revitalize both COE and HCOP in recent fiscal
years, but it is important to fully fund the programs at least at the
fiscal year 2004 level so that more diversity is achieved in our health
professions.
Earlier this year with the passage of health reform, the Congress
showed the importance of the many of the Title VII programs, including
the Minority Centers of Excellence (COE) and Health Careers
Opportunities Program (HCOP), by reauthorizing the programs.
Minority Centers of Excellence.--COEs focus on improving student
recruitment and performance, improving curricula in cultural
competence, facilitating research on minority health issues and
training students to provide health services to minority individuals.
COEs were first established in recognition of the contribution made by
four historically black health professions institutions (the Medical
and Dental Institutions at Meharry Medical College; The College of
Pharmacy at Xavier University; and the School of Veterinary Medicine at
Tuskegee University) to the training of minorities in the health
professions. Congress later went on to authorize the establishment of
``Hispanic'', ``Native American'' and ``Other'' Historically black
COEs. For fiscal year 2014, I recommend a funding level of $24 million
for COEs.
Health Careers Opportunity Program (HCOP).--HCOPs provide grants
for minority and non-minority health profession institutions to support
pipeline, preparatory and recruiting activities that encourage minority
and economically disadvantaged students to pursue careers in the health
professions. Many HCOPs partner with colleges, high schools, and even
elementary schools in order to identify and nurture promising students
who demonstrate that they have the talent and potential to become a
health professional.
Collectively, the absence of HCOPs will substantially erode the
number of minority students who enter the health professions. Over the
last three decades, HCOPs have trained approximately 30,000 health
professionals including 20,000 doctors, 5,000 dentists and 3,000 public
health workers. For fiscal year 2014, I recommend a funding level of
$23 million for HCOPs.
Mr. Chairman, please allow me to express my appreciation to you and
the members of this subcommittee. With your continued help and support,
NCDHP member institutions and the Title VII Health Professions Training
programs can help this country to overcome health and healthcare
disparities. Congress must be careful not to eliminate, paralyze or
stifle the institutions and programs that have been proven to work.
NCDHP seeks to close the ever widening health disparity gap. If this
subcommittee will give us the tools, we will continue to work towards
the goal of eliminating that disparity everyday.
Thank you, Mr. Chairman.
______
Prepared Statement of the National Council of Social Security
Management Associations
On behalf of the National Council of Social Security Management
Associations (NCSSMA), thank you for the opportunity to submit this
testimony regarding the Social Security Administration's (SSA's) fiscal
year 2014 Appropriation.
NCSSMA is a membership organization of nearly 3,500 SSA managers
and supervisors who provide leadership in over 1,200 community-based
Field Offices (FOs) and Teleservice Centers (TSCs) throughout the
country. We are the front-line service providers for SSA in communities
all over the Nation. Since the founding of our organization over forty-
four years ago, NCSSMA has considered our top priority to be a stable
SSA, which delivers quality and timely community-based service to the
American public. We also consider it a top priority to be good stewards
of the taxpayers' monies and the Social Security programs we
administer.
We fully support the President's budget request of $12.297 billion
for SSA's administrative funding in fiscal year 2014. This request
includes a new Program Integrity Administrative Expenses (PIAE) account
that will provide new funding in addition to the Limitation on
Administrative Expenses (LAE) account dedicated to program integrity
work: medical continuing disability reviews (CDRs) and Supplemental
Security Income (SSI) redeterminations.
The PIAE account would provide a reliable stream of mandatory
funding dedicated to program integrity efforts. In total, the fiscal
year 2014 SSA budget proposal would provide SSA with $1.5 billion for
these cost-saving program integrity workloads. SSA estimates that
medical CDRs provide a return-on-investment of more than $9 for every
dollar spent, and for SSI redeterminations it saves $5 for every dollar
spent.
It is critical SSA receives flexible funding for the LAE and PIAE
request to respond to the increased requests for assistance from the
American public as a result of the aging of the baby boom generation,
the economic downturn, and to fulfill our stewardship responsibilities.
Without adequate funding, SSA will not be able to provide the high-
quality customer service Americans deserve and will be unable to
process program integrity workloads, which save taxpayer dollars and
reduce the Federal budget and deficit.
SSA TSCs, hearing offices, program service centers (PSCs),
disability determination services (DDS), and the over 1,200 FOs are in
critical need of adequate resources to address their growing workloads.
The fiscal year 2014 budget request would allow SSA to cover
inflationary increases, continue efforts to reduce hearings and
disability backlogs, increase deficit-reducing program integrity work,
and replace some critical staffing losses in SSA's components. It would
also help to minimize the closure of additional field offices and
improve public service.
SSA is challenged by ever-increasing workloads, very complex
programs to administer, and increased program integrity work with
diminished staffing and resources. Despite SSA's enormous challenges,
SSA's fiscal year 2013 appropriation for administrative funding through
the LAE account was about $370 million below the fiscal year 2012
enacted level, which includes a reduction of $386 million due to
sequestration cuts. The fiscal year 2012 appropriation for
administrative funding through the LAE account was approximately $300
million below the fiscal year 2011 enacted level after rescissions from
Carryover Information Technology funds.
This funding level was over $1 billion below the President's budget
request and did not allow SSA to cover inflationary costs for fixed
expenses. It resulted in significant reductions in vital services,
including a continuation of the hiring freeze in most of SSA; closing
all FOs to the public one hour earlier (August 2011 one-half hour and
November 2012 an additional one-half hour); closing of all FOs at noon
on Wednesdays (effective January 2013); consolidation of 41 FOs and the
closure of over 500 remote contact stations since fiscal year 2010;
cancellation of plans to open 8 new hearings offices and a new TSC;
suspension of mailing annual benefit statements to the public; and
postponement of electronic service and programmatic efficiency
initiatives.
Public service has deteriorated significantly with increased
waiting times as SSA continues to serve a near record number of
visitors. Each day, almost 182,000 people visit SSA FOs and more than
445,000 people call for assistance. The waiting time for visitors to
date during fiscal year 2013 is nearly 30 percent longer than the same
time period in fiscal year 2012. During the first 6 months of fiscal
year 2013, over 2.1 million visitors waited more than one hour to be
served. The number of visitors leaving without service has increased 10
percent (over 1.2 million visitors).
Despite agency online service initiatives and the reduction of
public service hours, 44.9 million visitors were served by FOs in
fiscal year 2012, approximately the same as in each of the previous 3
years. SSA's FO busy rate to answer public telephone calls has
increased from 7.4 percent in fiscal year 2012 to 14.9 percent (through
March 2013). TSCs have also experienced a significant degradation of
service. The agent busy rate has increased from 4.6 percent in fiscal
year 2012 to 16.8 percent through March 2013. In addition, the time
someone waits for their call to be answered has increased by 71
percent.
The need for resources in SSA FOs is critical to provide vital
services to the American public. SSA has lost 9,200 employees since the
beginning of fiscal year 2011--over 10 percent of its workforce. SSA
will have approximately the same number of employees in fiscal year
2013 as it did in fiscal year 2007. FO permanent staffing has gone from
29,481 employees at the end of fiscal year 2010 to 26,298 employees in
March 2013--a 10.8 percent decrease. In the last 2 years, more than 600
SSA FOs have lost more than 10 percent of their staff and 16 percent of
all SSA FOs have had a net attrition loss of over 20 percent.
Geographic staffing disparities will only increase as ongoing
attrition spreads unevenly across the country. This leaves many offices
significantly understaffed and without sufficient capacity to address
workloads. It is important to note the same SSA FO staff that process
medical CDRs and SSI redeterminations, are the same employees who
answer telephone calls, take initial claim applications, and develop
and adjudicate benefit claims, which are vital in protecting taxpayer
dollars and prevent improper payments before they occur. The SSA fiscal
year 2014 budget request would allow SSA to begin replacing critical
staffing losses and rebalance service, quality, and stewardship
responsibilities.
One of the greatest concerns for SSA is the huge increase in
retirement, survivor, dependent, disability, and Supplemental Security
Income (SSI) new claims and appeals. Retirement and survivor claims
will be over 40 percent higher than in 2007. Initial disability claims
have increased by nearly 25 percent and disability hearings have
increased by nearly 50 percent since 2007. This increase is driven by
the nearly 80 million baby boomers who will be filing for Social
Security benefits by 2030 (an average of 10,000 per day) and by the
economic downturn.
In fiscal year 2014, SSA expects to handle over 5.4 million
retirement, survivors, and Medicare claims; nearly 2.9 million Social
Security and SSI initial disability claims; and 278,000 SSI aged
claims. Also in fiscal year 2014, SSA will complete approximately
725,000 reconsideration requests, 807,000 hearing requests, 16 million
new and replacement Social Security cards, and 1.1 million Medicare
prescription drug subsidy applications.
In fiscal year 2012, disability claims receipts exceeded 3 million
for the fourth successive year. Since fiscal year 2008, the number of
claims pending for a disability medical decision rose from 565,286 to
707,700 in fiscal year 2012--an increase of 142,414, or 25.2 percent.
Despite the fact disability receipts have exceeded 3 million for four
successive years, the current staffing level for DDSs is 14,064, 2,129
(13.1 percent) below the level at the end of fiscal year 2010. A
continued hiring freeze in DDSs for fiscal year 2013 will not allow SSA
to complete as many disability claims as received.
SSA was making progress in addressing the enormous backlog of
hearings cases, but resource issues have magnified the challenges.
After December 2008, when the number of pending hearings rose to
768,540, the backlog was reduced for 19 straight months, to 694,417 in
June 2010. However, pending hearings began to increase again and as of
the end of March 2013 stood at 833,353 cases. In fiscal year 2012,
849,869 hearing requests were filed, which nearly matched the all-time
high for hearing requests in fiscal year 2011, an increase of over 45
percent since fiscal year 2006. The number of disability claims pending
is not acceptable to the millions of Americans who depend on Social
Security or Supplemental Security Income for their basic income,
meeting health care costs, and supporting their families.
Program integrity initiatives save taxpayer dollars and are
fiscally prudent in reducing the Federal budget and deficit. To address
program integrity, the President's fiscal year 2014 SSA budget request
provides a total of $1.5 billion for the two most cost-effective tools
to reduce improper payments--medical CDRs and SSI redeterminations.
If SSA would have received the full $1.024 billion requested by the
President for program integrity initiatives in fiscal year 2013, the
estimated program savings over the next 10 years would have been $8.1
billion. However, as a result of the sequester and the current enacted
fiscal year 2013 budget, SSA will not accomplish those levels of
program integrity workloads. If the mandatory spending increase
proposed in the fiscal year 2014 budget continues through 2023 the
savings will be $37.7 billion.
For millions of Americans, SSA is the face of the Federal
Government. Backlogs and delayed services at SSA FOs result in
inefficiencies and are a source of customer frustration. Last year, FOs
received nearly 4,000 incidents of threat or violence, and there were
over 500 incidents in the first three weeks of this year. Untimely
services can also be economically disastrous to beneficiaries with
disabilities who attempt to return to work and must report their work
activity.
Without question, SSA would have used the President's proposed
funding for fiscal year 2013 of $11.76 billion for the LAE account to
address the growing workloads facing the agency. Projecting to fiscal
year 2014, SSA will require additional funding just to address
inflationary costs associated with items such as salaries, employee
benefits, rent, and facility security. SSA would also need additional
resources to address the backlog of post-eligibility work and medical
CDRs.
SSA estimates the effect of sequestration on fiscal year 2013 SSA
operations will result in pending levels of initial disability claims
rising by over 140,000 claims; applicants may wait two weeks longer for
initial disability decisions and nearly a month longer for disability
hearing decisions; and staffing losses (attrition without replacement)
of over 3,400 more employees are anticipated. It is essential to
preserve good service to the American public at SSA. SSA must be
properly funded to ensure the efficient, accurate, and expeditious
administration of this vital social program.
We realize that the fiscal year 2014 funding level outlined above
is significant, particularly in this difficult Federal budget
environment. However, Social Security is a key component of America's
economic safety net for the aged and disabled and is facing
unprecedented challenges. Even with the President's proposed budget,
SSA expects an annual growth in their backlog of 2,800 work years. The
American public expects and deserves SSA's assistance.
SSA needs sufficient resources to fulfill its stewardship
responsibilities, process its core workloads, reduce the hearings
backlog and accomplish critical program integrity workloads, which
ensure accurate payments, save taxpayer dollars, and is fiscally
prudent. We are confident this investment in SSA will benefit our
entire Nation.
On behalf of NCSSMA members nationwide, thank you for the
opportunity to submit this written testimony. We respectfully ask that
you consider our comments, and would appreciate any assistance you can
provide in ensuring the American public receives the critical and
necessary service they deserve from the Social Security Administration.
______
Prepared Statement of the National Family Planning & Reproductive
Health Association
Summary.--Requesting $327 million in funding for fiscal year 2014
for the national family planning program (Title X of the Public Health
Service Act).
My name is Clare Coleman; I'm the President & CEO of the National
Family Planning & Reproductive Health Association (NFPRHA), a
membership association representing the Nation's family planning
provider systems. A majority of NFPRHA's more than 500 members receive
Federal funding from Medicaid and through Title X of the Public Health
Service Act, the only dedicated federally funded family planning
program for the low-income and uninsured. These programs are a part of
the Nation's public health safety net, and are at the forefront of
efforts to reduce rates of unintended pregnancy and improve sexual and
reproductive health outcomes.
NFPRHA requests that you make a significant investment in the Title
X family planning program in the fiscal year 2014 bill by supporting
the President's request and appropriating $327 million. Title X
sustained significant cuts--$23.6 million--in fiscal years 2011 and
2012, at a time when the need for publicly subsidized health care is
growing. As a result of sequestration, it is estimated that the program
will sustain an additional 5%--9 percent cut. Cuts to Title X health
systems have led to health center hours being cut and staff layoffs--
which directly led to a sharp drop in the number of patients seen in
the program in 2011, the last year for which Federal data are
available.
Title X-funded centers serve more than 5 million low-income women
and men annually at nearly 4,400 health centers. Title X services help
women and men plan the number and timing of pregnancies, helping to
prevent nearly one million pregnancies a year, which would have likely
resulted in 432,600 unintended births and 406,200 abortions. In
addition to providing contraceptive services and supplies, Title X
health centers provide preventive health services, education, and
counseling. Title X assists with patient referrals and helps coordinate
care for individuals who traditionally have lacked access to routine
care. The services provided at publicly funded health centers not only
improve public health, they save billions of taxpayer dollars each
year. In 2008, publicly funded family planning saved Federal and State
governments $5.1 billion; services provided at Title X-supported
centers accounted for $3.4 billion in such savings in that same year
alone. A recent estimate from the Brookings Institution found that
expanding publicly funded family planning services would produce
taxpayer savings of $2-$6 for every dollar spent.
For more than 40 years, Title X has been a critical safety net for
those living in under-resourced communities across the country. The
$23.6 million in cuts to Title X in fiscal year 2011 and fiscal year
2012--a 7.4 percent loss of funding--came after the largest growth of
patients served by the Title X network in more than a decade, an
increase of more than 170,000 women, men, and teens between 2008 and
2010. Unfortunately, the recent funding cuts have reversed this trend,
and in just 1 year between 2010 and 2011, the program experienced a
decline of more than 200,000 patients.
Today, safety-net providers deliver health care to many in need,
and especially those in vulnerable populations, a role that will
undoubtedly grow when full ACA coverage expansion begins in 2014.
Despite the proven cost savings and public support of Title X, the
program is still under extreme pressure. A funding level of $327
million would help to stabilize systems following the significant
damage done by Federal and State budget cuts over the last few years.
This is essential--if we do not stabilize the system now, this network
of providers will not be available to serve those in need, including
the millions of individuals who will gain health coverage through the
ACA and will seek health care in the safety net.
Thank you for the opportunity to testify on the role of Title X in
the public health safety net. NFPRHA stands ready to work with you to
strengthen America's network of family planning providers and its role
in helping to ensure that health care reforms are a success.
______
Prepared Statement of the National Head Start Association
Chairman Harkin, Ranking Member Moran, and members of the
subcommittee, thank you for allowing the National Head Start
Association (NHSA) to submit testimony on behalf of funding for Head
Start and Early Head Start in fiscal year 2014 (fiscal year 2014). Head
Start centers provide critical early education, health, nutrition,
child care, parent engagement and family support services in return for
a lifelong measurable impact on the low-income children and families
who are served. NHSA urges Congress to support robust investment in
Head Start centers nationwide in order to provide quality school
readiness opportunities for the most at-risk young children and their
families--especially as they face greater obstacles today than ever.
NHSA is grateful for the enduring, bipartisan support of Congress
and every President for Head Start throughout its 48 year history. We
are particularly appreciative of the leadership of this subcommittee,
and hope it gives serious consideration to the President's proposal to
increase access to high-quality early learning programs. As our
Nation's flagship early learning program, we believe Head Start can
serve as the model for expansion. In fiscal year 2014, we believe there
are important investments that must be made in Head Start and other
early learning initiatives. First, however, we urge you to consider our
highest priority: restoring services to the children and families
across the country we will lose and have lost due to sequestration.
The 5.27 percent cut that all Head Start grantees were directed to
make on March 1st has already had disruptive and serious impact. Many
programs are already in the process of notifying families that their
children no longer have a place in our classrooms and that families
will be on their own next school year. Two Indiana programs have
resorted to a lottery drawing to figure out which families would be cut
from the program.
We certainly do not want to cut children, but due to several years
of continued increases to operating costs, there is no budget cushion.
During this most recent recession, Head Start and Early Head Start
directors have had extreme difficulty maintaining their program size,
resulting in the loss of 7,000 Head Start slots even before
sequestration took effect. Under sequestration, every program will need
to cut services for children and families, and therefore staff, to
absorb the reduction. Nationally, the Department of Health and Human
Services estimates that sequestration will result in 70,000 fewer
children receiving Head Start services. NHSA hopes that Members of this
subcommittee will work with their Senate colleagues towards restoration
of Head Start cuts in fiscal year 2014.
Once sequestration is repealed we can then turn to the bold plan to
dramatically increase access to high quality early learning that
President Obama has put forth. The Head Start community sees enormous
potential in the President's fiscal year 2014 Budget proposal to expand
early learning opportunities for low to middle income children. We also
see challenges in the areas of quality, workforce needs, and overall
cost that may hinder success. We are prepared to offer specific
recommendations to ensure that an expanded system works well for
children, families, and our taxpayers.
Specifically, the Head Start community supports the
Administration's request for an increase of $1.6 Billion to Head Start
in fiscal year 2014. We propose that within this amount, Head Start and
Early Head Start programs are first allowed to address their rising
operating costs, and then are able to expand Early Head Start services
consistent with the President's proposal. Additionally, we hope the
subcommittee will consider our suggestions for an expanded pre-
Kindergarten system that could have great impact on our children for
generations to come.
Head Start Fixed Costs Continue to Rise
Within the $1.6 billion request for Head Start and Early Head
Start, the President proposes to give current grantees an additional
$200 million to help meet rising operating costs. NHSA proposes that
the Administration instead set aside $419 million to help programs
`catch up' from previous years; without full adjustments, centers have
been falling behind. Even before sequestration, the cost of serving
families has risen at a much faster pace than any increase in funding.
All grantees have experienced a rapid increase in their fixed costs,
including maintenance, fuel, transportation, and health insurance. In
some areas, rent on facilities alone has gone up between 5-10 percent.
It is an enormous task to keep costs low and still maintain Head
Start's high-quality comprehensive model. Prior to the 2012-2013 school
year, programs had already laid off staff, closed facilities and
consolidated programs to cut costs, and have leaned more than ever on
community partners to help provide health, employment, and other
services required by the comprehensive model.
Increases in fuel costs have impacted programs greatly, especially
in rural areas where transportation to and from the center is critical
for families in a sprawling service area. Some rural southern programs
report that fuel costs have gone up over 64%--affecting transportation,
waste removal, and food prices. Deferred maintenance of Head Start
centers poses its challenges as well; centers operating in older
facilities hope the roof will hold out one more year, or that the
playground equipment will remain solid and safe. Regardless, the
centers are judged by frequent monitors who have the ability to demand
change when they see a potential hazard--with the additional funds
being requested, Head Start directors could do more to prevent
potential safety hazards.
Finally, the significant continuous rise in the cost of health
insurance has been particularly detrimental for programs across the
country. Last year in Louisiana, the Iberville Parish Council Head
Start, which serves 360 children and employs 61 teachers and staff at 6
centers, struggled to make ends meet because of rising health insurance
and other costs. Ultimately, the Parish Council voted to relinquish
control of the program entirely and turn it over to the Federal
Government rather than tell families they could not serve their
children because they could not afford to continue subsidizing the
increasing costs. By prioritizing grantees' ability to meet these costs
in fiscal year 2014, the subcommittee will ensure that current centers
can provide a consistently high-quality level of service to their local
children and families.
Expanded Access to Early Head Start
NHSA strongly supports the President's vision of increasing
investments in Early Head Start (EHS). The available research on child
brain development clearly shows the effectiveness of high-quality early
interventions. However, high-quality infant care options are extremely
limited, especially for low-income families. Early Head Start is only
able to serve a scant 4 percent of eligible infants, about 110,000
slots. In order to really fully address the continuum, we need to
invest in access to quality programs, and the President's proposal
would nearly double the available slots in EHS.
The President proposes expanding access to programs that are at the
EHS level of quality, but executed through partnerships with local
child care (CC) providers. NHSA applauds the Administrations' effort to
improve both the lack of access to and the overall quality of care for
infants and toddlers. However, policy makers must understand that the
missions of CC and EHS are inherently different--and the structure of
these partnerships must be carefully considered. We propose that a
multitude of flexible expansion options be eligible, including
contracts between EHS-CC/Family Child Care (FCC), expansion of existing
EHS center-based/home-based services, and allowing EHS providers to
offer training and technical assistance bring area CC providers up to
EHS standards. Further, innovative program proposals should be
encouraged by allowing exemptions or a significant ``hold harmless''
period from the Designation Renewal System.
The President's proposal also calls for the conversion of current 4
year-old Head Start slots into Head Start and Early Head Start slots
for children birth to age four. We believe this decision should be
based on community capacity and need, as opposed to a unilateral policy
decision made in Washington, DC. Head Start should be allowed to
continue serving both three and 4 year-olds while expanding, rather
than converting, Early Head Start slots in order to truly serve the 0-5
continuum. It must also be recognized that the conversion of Head Start
slots into Early Head Start slots includes significant additional cost,
time, and challenges, including different staff ratios, facility
requirements, and stark differences between the credentials required
for Early Head Start versus Head Start teachers. One program in
California that recently went through the slot conversion process
informed NHSA that they converted 166 Head Start slots into an
equivalent of 70 Early Head Start slots. This is in line with the
national conversion experience.
We hope this subcommittee will show its support for current
initiatives to allow grantees to restructure along a birth-to-five
continuum. On February 4th, 2013, the Office of Head Start announced
the first pilot funding for birth to five projects in Detroit,
Baltimore, Jersey City, Washington, DC, and Mississippi's Sunflower
County. Each community had been included in the first cohort of
Designation Renewal System recompetitions, and the Office of Head Start
saw an opportunity to try a different configuration. The grants are
meant to encourage applicants to develop comprehensive, flexible,
seamless birth-to-five programs which incorporate both Head Start and
Early Head Start funding. By providing a streamlined grant to create a
tailored local approach, these birth to five pilots will serve as the
model for a continuum of comprehensive services that meet the diverse
and challenging needs of families in these communities. We hope the
subcommittee will recognize the value of this approach and support
expansion of these models.
Pre-Kindergarten Expansion
The central component of the President's proposal is the creation
of a pre-kindergarten program that seeks to partner with and leverage
State investments so they might take over responsibility for Pre-K
within 10 years. While this long-term goal is admirable, there are
several challenges in the areas of quality, workforce pipeline, and
overall cost that may hinder success. We encourage careful
consideration of the following six suggestions for the proposed
expansion of State pre-kindergarten programs over the next 10 years.
First and foremost, we hope Congress will ensure the creation of a
diverse and mixed delivery system, rather than creating a duplicative
system through the school system. Such a strategy would utilize
existing providers in a community to ensure faster scaling, better
quality, and locally-appropriate programs. From the Head Start
perspective, this is the most cost-effective option that allows
communities to determine what its needs are, and which providers within
that community can serve these children and families best.
Further we sincerely hope that this subcommittee will help
reiterate the importance of two critical components of the Head Start
model: parent engagement and comprehensive services. New programs under
this expansion should be required to implement clear, meaningful,
evidence-based parent and family engagement standards and practices for
participating States and classrooms. These components work. A study
released by the National Bureau of Economic Research shows that Head
Start parents are more actively engaged in their children's academic
careers long after the child has entered kindergarten, a key ingredient
of a learning environment that leads to future success.\1\ The
Baltimore Education Research Consortium (BERC) released findings in
March 2012 related to chronic absenteeism in Kindergarten--which
studies have shown to relate to poorer overall academic achievement as
late as 5th Grade. Pre-school-aged children are completely reliant on
their parents to prioritize attendance at this stage of life. BERC's
research shows that students who had attended Head Start showed the
highest attendance rates in kindergarten and the lowest level of
chronic absence in first through third grades.\2\
We also hope that a new expanded pre-k system will include support
for providing the comprehensive health and development services for the
children and families who need them. Head Start families with their
increased health literacy also show immediate health care benefits,
including lower Medicaid costs--on average $232 per family. The program
has also reduced mortality rates from preventable conditions for 5-to
9-year olds by as much as 50 percent.\3\ Studies have shown that the
program reduces health care costs for employers and individuals because
Head Start children are less obese,\4\ 8 percent more likely to be
immunized,\5\ and 19 to 25 percent less likely to smoke as an adult.\6\
Head Start Works
Looking forward, we hope this subcommittee will continue to support
Head Start as a high-yield investment. Studies show that for every one
dollar invested in a Head Start child, society earns at least $7 back
through increased earnings, employment, and family stability; \7\ as
well as decreased welfare dependency,\8\ health care costs,\9\ crime
costs,\10\ grade retention,\11\ and special education.\12\
Head Start saves tax dollars by decreasing the need for children to
receive special education services in elementary schools.\13\ Data
analysis of a recent Montgomery County Public Schools evaluation found
that a MCPS child receiving full-day Head Start services when in
Kindergarten requires 62 percent fewer special education services, and
saves taxpayers $10,100 per child annually.\14\ States can save $29,000
per year for each person that they don't need to incarcerate because
Head Start children are 12 percent less likely to have been charged
with a crime.\15\ These non-test-score findings help illustrate the
long-term viability of the program--today, more than 27 million Head
Start graduates are working every day in our communities to make our
country and our economy strong.
Again, the Head Start community understands the budgetary pressures
the Federal Government is facing and is very grateful for the
commitment shown by Congress and the President to keep early learning,
and Head Start in particular, as a priority. The research shows that
the ``achievement gap'' is apparent as early as the age of 18 months--
we will spend substantially more downstream if these same young people
are not prepared to graduate high-school, attend college and lead
prosperous lives. We urge the subcommittee to restore the drastic cuts
to Head Start and Early Head Start, and support increased access to
high-quality early learning programs for children along the 0-5
continuum. In doing so, together we will ensure that we have a stable
and prosperous workforce for generations to come. Thank you for your
time and consideration.
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\1\ National Bureau of Economic Research. (2011, December).
Children's Schooling and Parents' Investment in Children: Evidence from
the Head Start Impact Study (Working Paper No. 17704). Cambridge, MA:
A. Gelber & A. Isen.
\2\ Baltimore Education Research Consortium (2012, March). Early
Elementary Performance and Attendance in Baltimore City Schools' Pre-
Kindergarten and Kindergarten. Baltimore, MD: F. Connelly & Olson, L.
\3\ Ludwig, J. and Phillips, D. (2007) Does Head Start improve
children's life chances? Evidence from a regression discontinuity
design. The Quarterly Journal of Economics, 122 (1): 159-208.
\4\ Frisvold, D. (2006, February). Head Start participation and
childhood obesity. Vanderbilt University Working Paper No. 06-WG01.
\5\ Currie, J. and Thomas, D. (1995, June). Does Head Start Make a
Difference? The American Economic Review, 85 (3): 360.
\6\ Anderson, K.H., Foster, J.E., & Frisvold, D.E. (2009).
Investing in health: The long-term impact of Head Start on smoking.
Economic Inquiry, 48 (3), 587-602.
\7\ Ludwig, J. and Phillips, D. (2007). The Benefits and Costs of
Head Start. Social Policy Report. 21 (3: 4); Deming, D. (2009). Early
childhood intervention and life-cycle skill development: Evidence from
Head Start. American Economic Journal: Applied Economics, 1(3): 111-
134; Meier, J. (2003, June 20). Interim Report. Kindergarten Readiness
Study: Head Start Success. Preschool Service Department, San Bernardino
County, California; Deming, D. (2009, July). Early childhood
intervention and life-cycle skill development: Evidence from Head
Start, p. 112.
\8\ Meier, J. (2003, June 20). Kindergarten Readiness Study: Head
Start Success. Interim Report. Preschool Services Department of San
Bernardino County.
\9\ Frisvold, D. (2006, February). Head Start participation and
childhood obesity. Vanderbilt University Working Paper No. 06-WG01;
Currie, J. and Thomas, D. (1995, June). Does Head Start Make a
Difference? The American Economic Review, 85 (3): 360; Anderson, K.H.,
Foster, J.E., & Frisvold, D.E. (2009). Investing in health: The long-
term impact of Head Start on smoking. Economic Inquiry, 48 (3), 587-
602.
\10\ Reuters. (2009, March). Cost of locking up Americans too high:
Pew study; Garces, E., Thomas, D. and Currie, J. (2002, September).
Longer-term effects of Head Start. American Economic Review, 92 (4):
999-1012.
\11\ Barnett, W. (2002, September 13). The Battle Over Head Start:
What the Research Shows.; Garces, E., Thomas, D. and Currie, J. (2002,
September). Longer-Term Effects of Head Start. American Economic
Review, 92 (4): 999-1012.
\12\ NHSA Public Policy and Research Department analysis of data
from a Montgomery County Public Schools evaluation. See Zhao, H. &
Modarresi, S. (2010, April). Evaluating lasting effects of full-day
prekindergarten program on school readiness, academic performance, and
special education services. Office of Shared Accountability, Montgomery
County Public Schools.
\13\ Barnett, W. (2002, September 13). The Battle Over Head Start:
What the Research Shows. Presentation at a Science and Public Policy
Briefing Sponsored by the Federation of Behavioral, Psychological, and
Cognitive Sciences.
\14\ NHSA Public Policy and Research Department analysis of data
from a Montgomery County Public Schools evaluation. See Zhao, H. &
Modarresi, S. (2010, April). Evaluating lasting effects of full-day
prekindergarten program on school readiness, academic performance, and
special education services. Office of Shared Accountability, Montgomery
County Public Schools.
\15\ Reuters. (2009, March). Cost of locking up Americans too high:
Pew study; Garces, E., Thomas, D. and Currie, J. (2002, September).
Longer-term effects of Head Start. American Economic Review, 92 (4):
999-1012.
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Prepared Statement of the National Health Council
Dear Chairman Harkin and Ranking Member Moran: On behalf of the
Nation's leading patient advocacy organizations, thank you for the
opportunity to submit testimony on the significance of funding for
Federal health research agencies and other programs that are designed
to improve the health of our Nation. As work begins on the fiscal year
2014 Labor-HHS appropriations bill, the NHC urges the subcommittee to
maximize funding for essential health programs, including those at the
National Institutes of Health (NIH), Centers for Disease Control and
Prevention (CDC), Health Resources and Services Administration (HRSA),
Substance Abuse and Mental Health Services Administration (SAMHSA), and
the Agency for Healthcare Research and Quality (AHRQ). We urge Congress
to refrain from shying away from its longstanding commitment to serve
people with chronic conditions, the individuals who use our health
system on a daily basis.
The National Health Council (NHC) is the only organization of its
kind that brings together all segments of the health care community to
provide a united voice for the more than 133 million people living with
chronic diseases and disabilities and their family caregivers. Made up
of more than 100 national health-related organizations and businesses,
its core membership includes the Nation's leading patient advocacy
organizations, which control its governance. Other members include
professional societies and membership associations, nonprofit
organizations with an interest in health, and major pharmaceutical,
medical device, biotechnology, and insurance companies.
The NHC fully appreciates the challenging fiscal environment facing
the country and your important role in guiding our Nation through these
complex and difficult times. The NHC recognizes that Federal resources
must be carefully allocated so as to ensure that such investments
produce the greatest good for the American people.
In turn, let us not forget that Federal support of health programs
at HHS is moving us closer to making the impossible possible--saving
medical expenses through effective prevention efforts and new
treatments, and saving lives in the process.
The NHC and its member patient organizations cannot overstate that
Federal support of medical research, prevention programs, and health
care delivery is vital to people living with chronic diseases and
disabilities. As we depict in Figure 1, these services should not be
considered in isolation, but rather serve as essential building blocks
toward strengthening the collective health care system.
Investment in biomedical research is leading the discovery of
biomarkers--physical signs or biological substances that indicate the
presence of conditions such as osteoarthritis, one of the leading
causes of disability in the elderly and the most common type of
arthritis in the U.S., usually affecting middle-aged and older people.
This type of research will advance our understanding of disease
progression and earlier detection and aid in expediting clinical trials
on novel treatments.
Funds to pay for the study of rare or less common diseases will
help to greatly improve our understanding of human health--and the more
common conditions that burden us all. For example, research on alpha-1
antitrypsin deficiency--a disease affecting no more than 100,000
people--fueled new areas of investigation on COPD, a respiratory
condition found in more than 12 million individuals.
The path to discovery supported by the Federal Government can
result in cutting-edge, cost-effective programs. A widely-regarded NIH
clinical trial on diabetes and subsequent translational research found
that modest weight loss helped prevent type 2 diabetes for 58 percent
of participants and positive results could be obtained for less than
$300 per person per year. These findings led to the creation of CDC's
National Diabetes Prevention Program, which serves individuals with
prediabetes in local communities across the country.
Research, prevention efforts, and programs that provide access to
services and treatments each contribute importantly to enabling
patients to manage their health. As baby boomers age, the prevalence of
and deaths from diseases such as Alzheimer's and heart disease are
projected to increase. Clearly, now is not the time to decrease our
Nation's investment in research that holds the key to the prevention,
treatment, and cure of America's leading and most costly causes of
death.
The NHC would be happy to provide the subcommittee with numerous
personal patient stories that demonstrate why appropriate funding of
research, prevention, and health delivery programs is crucial to the
millions of men, women, and children in this country living with
chronic diseases and disabilities. We understand the difficulty you
face in reaching consensus on a funding level that balances the needs
of our country with the needs of people with few or possibly no
treatment options.
But how do you place a cost figure on people like Debra--a woman
diagnosed with chronic kidney disease who, after many years of
dialysis, underwent a successful kidney transplant that was made
possible because of advancements based on federally funded research?
She was able to give back to society as a volunteer at Walter Reed Army
Medical Center, helping others confronted with organ failure to deal
with the changes in their lives and remain positive.
If we fail to take aggressive and deliberate action now to
appropriately fund essential health programs, we will pay a terrible
cost later--both in terms of health care expenditures and human lives.
The NHC appreciates the opportunity to submit this written
testimony to the subcommittee. We understand that you face many hard
decisions and again urge you to maximize funding for health programs
that benefit people with chronic diseases and disabilities so that
patients will be able to live longer, healthier, and more productive
lives.
Figure 1. Funding the Continuum of Care for Patients with Chronic
Diseases and Disabilities
______
Prepared Statement of the National Indian Child Welfare Association
The National Indian Child Welfare Association (NICWA) is a national
American Indian/Alaska Native (AI/AN) organization with over 25 years
of experience in providing leadership in support of and analysis of
public policy that affects AI/AN children and families. NICWA regularly
provides community and program development technical assistance to
tribal communities regarding the development of effective services for
this population. Our primary focus will be on Department of Health and
Human Service programs serving AI/AN children and families. We thank
the subcommittee for its efforts to honor the Federal trust
responsibility and provide necessary resources to meet the unique needs
of tribal children and families.
dhhs title iv-b subpart 2: promoting safe and stable families (pssf)
Request.--Increase fiscal year 2014 appropriations for the
discretionary component of this program to $75 million (fiscal year
2012 enacted $63 million). This would increase the number of tribes
eligible (currently 121) and increase allocations for eligible Indian
tribes. Only tribes who are eligible for grants of $10,000 or more
under the statutory formula are eligible to apply.
Data and background to justify requests
PSSF is one of only a few Federal funding streams that can be used
for services that prevent out-of-home placement and work to strengthen
families where either the children are at risk of being placed or have
been placed. These services form the foundation of all tribal child
welfare programs and are critical to successful outcomes for their
children and families. The funds are typically used to establish and
operate integrated, preventive family preservation services and family
support services for families at risk and/or in crisis. This funding is
a particularly valuable tool for tribal child welfare because family
preservation and family reunification work aligns with traditional
American Indian and Alaska Native (AI/AN) cultures and practices.
Mainstream approaches to child welfare, which can often be in conflict
with AI/AN ways of being and healing, often result in disproportionate
placement of AI/AN children in State systems.
Anecdotes of successes of the Federal investment in tribal programs
From Tlingit & Haida Tribes.--Our Preserving Native Families (PNF)/
ICWA department received a phone call from the Office of Children's
Services (OCS) regarding concerns for two children and explained their
concerns regarding the mother's behavior. OCS was preparing to go into
the home for an initial investigation.
Our office did some research and learned that the mother was a TANF
client. One of our supervisors made a call to our TANF program and
asked if they would consider using a new assessment tool, created by
the PNF department, to determine if the woman might be at risk for OCS
involvement. The TANF worker agreed and based on the score, which was
high, the TANF child welfare worker was able to engage the woman in PNF
services quickly. OCS, pleased that PNF services were being offered,
met with the woman who reported about the PNF services she was involved
with. OCS determined that her children were safe and that the mother
was actively engaging in prevention services with PNF. This mother only
needed someone to reach out to her; she was in need of help, but did
not know how to ask. This story is successful for two reasons;
departments collaborated and a tribal family remains together today. It
is Title IV-B Subpart 2 combined with BIA ICWA Title II funding that
made this possible by providing the base levels of funding for Tlingit
& Haida's PNF/ICWA department.
DHHS CHILD ABUSE PREVENTION AND TREATMENT ACT (CAPTA) CHILD ABUSE
DISCRETIONARY ACTIVITIES
Request.--Request $10 million increase in appropriations for this
discretionary grant program to account for the inclusion of tribes as
eligible applicants; include in the appropriations reporting language
requirements for better outreach to tribes and AI/AN service providers
and that funding be provided for tribes and AI/AN service providers.
Data and background to justify requests
The CAPTA discretionary fund supports a variety of activities,
including research and demonstration projects that study the causes,
prevention, identification, assessment and treatment of child abuse and
neglect. There is little information on the causes and/or risk factors
for abuse and neglect specific to AI/AN families.\1\ Similarly,
interventions and assessments that that take into account cultural
considerations for AI/AN children are lacking.\2\ This is largely due
to the fact that tribal communities are under resourced and therefore
unable to engage in evidence-based practices and practice-based
evidence because there is no national focus on this issue.
CAPTA discretionary funds can fill this gap by providing tribes the
necessary monies to support their capacity for research and development
in the area of child abuse and neglect prevention, identification,
assessment and treatment. Though the CAPTA Reauthorization Act of 2010
provides tribes with new funding opportunities under the research and
demonstration discretionary grant programs, still more can be done to
increase equitable tribal access to this important source of Federal
funding.
Since the inception of these discretionary grant programs, tribal
children's interests and issues have been given almost no focus in any
of the grant awards. This lag in attention to tribal children's needs
has created a vacuum in which accurate data, development, and testing
of more effective practices in the prevention of child abuse and the
protection and treatment of AI/AN children has not occurred. An
accurate and culturally competent understanding of the specific risk
factors and needs of AI/AN families and communities ensures that
programs that work with AI/AN children will be the most effective and
efficient. Appropriations reporting language that increases outreach
and encourages funding of tribal programs coupled with an overall
increase in appropriations will begin to fill this vacuum and improve
services for AI/AN children nationwide.
SAMHSA PROGRAMS OF REGIONAL AND NATIONAL SIGNIFICANCE (CIRCLES OF CARE
CHILDREN'S MENTAL HEALTH GRANT PROGRAM)
Request.--Continue fiscal year 2014 appropriation for Programs of
Regional and National Significance budget category at fiscal year 2012
level of $286 million. Funds for the Circles of Care program come out
of this budget category (typically $3 million per year).
Data and background to justify requests
The Circles of Care Grant Program is the only children's mental
health funding program exclusively available to tribes. It is the only
source of Federal funding that specifically supports the development of
culturally competent children's mental health service delivery models
in tribal communities, effective systemic reform and capacity building
are otherwise impossible due to lack of designated funding.
The need for continued and increased Circles of Care funding is
evidenced in available mental health data and the demonstrated and
measured effectiveness of the program. For example, AI/AN youth
experience post-traumatic stress disorder at higher rate than the
national average,\3\ struggle with alcohol use disorders at a higher
rate than the general youth population,\4\ and have had the highest
lifetime major depressive episode prevalence and the highest prevalence
of a major depressive episode in the last year when compared to all
other youth populations.\5\
To date, Circles of Care has enabled 38 tribal grantee communities
to develop culturally competent, community-based children's mental
service delivery models. Circles of Care yields measurable long-term
positive outcomes. These grants have significantly increased tribal
community awareness of the issues that impact their children's mental
health, facilitated community ownership and responses, and helped
tribes to develop capacity through leveraging of tribal funds and
creating new partnerships. Of those tribes that have graduated from the
Circles of Care program, nearly 1/3 have obtained direct funding
through the Child Mental Health Initiative (CMHI) program, otherwise
known as Systems of Care; others have been able to partner with other
CMHI grantees to implement their models, and remaining graduated sites
have secured other resources to implement their models to their best
ability.
samhsa systems of care children's mental health grant program
Request.--Continue to fund this program in fiscal year 2014 at the
fiscal year 2012 level of $117 million. This competitive grant program
allows eligible States, local governments and tribes to apply for and
administer a children's mental health services program (tribes at $5--6
million per year).
Data and background to justify requests
The current six-year tribal grantees are engaging local
communities, youth, families, and private and public partners in
collaborative partnerships to build sustainable children's mental
health programs and services. National aggregate data on six-year
Systems of Care programs illustrate the success and continued need for
Systems of Care program funding: 1) emotional and behavioral problems
were reduced or remained stable for 89 percent of children and youth
with co-occurring mental health and substance abuse diagnoses; 2)
school performance improved or remained the same for 75 percent of
children and youth served by the grant communities; and 3) almost 91
percent of children and youth with a history of suicide attempts or
suicidal ideation improved or remained stable.\6\ Considering these
positive outcomes and the behavioral health needs of tribal
communities, continued six-year Systems of Care program funding is
vital to tribes and their ability to design and implement successful
children's mental health programs, particularly because tribes remain
ineligible for direct access to the Mental Health Block Grant and
Medicaid funding.
Anecdotes of successes of the Federal investment in tribal programs
From Cherokee Nation.--Cherokee Nation's Behavioral Health Services
had been working on various children's initiatives for 8 years prior to
receiving the SAMHSA Systems of Care (SOC) Expansion Planning Grant
last year. During its 1 year as a SOC Expansion Planning grantee,
Cherokee Nation accomplished more success in this arena than ever
before. The funds were used as seed money to plan and lay the
foundation for expanding and sustaining children's mental health. One
concrete result of receiving these funds was Cherokee Nation's ability
to assess and begin to revamp its children's mental health billing
system. None of this could have been possible without the technical
assistance (TA) resources provided, the guiding SOC philosophy, and
systems-wide approach that created space for the larger Cherokee Nation
and community coalitions to engage actively and benefit from the
planning process and outcome. Cherokee Nation has since secured funding
to begin implementing pieces of the strategic plan developed per the
SOC Expansion Planning funding.
For more information regarding this testimony, please contact NICWA
Government Affairs Director David Simmons at [email protected].
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\1\ Bigfoot, D.S., Crofoot, T., Cross, T.L., Fox, K., Hicks, S., et
al. (2005). Impacts of Child Maltreatment in Indian Country: Preserving
the Seventh Generation through Policies, Programs, and Funding Streams:
A Report for BIA. Portland, OR: National Indian Child Welfare
Association.
\2\ Bigfoot, D.S., Crofoot, T., Cross, T.L., Fox, K., Hicks, S., et
al. (2005). Impacts of Child Maltreatment in Indian Country: Preserving
the Seventh Generation through Policies, Programs, and Funding Streams:
A Report for BIA. Portland, OR: National Indian Child Welfare
Association.
\3\ Cooper, J.L., Masi, R., Dababnah, S., Aratani, Y., and Knitzer,
K. (2007). Strengthening Policy to Support Children, Youth, and
Families Who Experience Trauma. New York, NY: National Center for
Children in Poverty, Mailman School of Public Health, Columbia
University. Retrieved from http://www.nccp.org/publications/
pub_737.html.
\4\ Office of Applied Studies, Substance Abuse and Mental Health
Services Administration (SAMHSA) (2007, January 19). Substance use and
substance use disorders among American Indians and Alaska Natives. The
National Survey on Drug Use and Health Report. Retrieved from http://
oas.samhsa.gov/2k7/AmIndians/AmIndians.cfm.
\5\ Urban Indian Health Institute, Seattle Indian Health Board
(2012). Addressing Depression Among American Indians and Alaska
Natives: A Literature Review. Seattle, WA: Urban Indian Health
Institute. Retrieved from http://www.uihi.org/wp-content/uploads/2012/
08/Depression-
Environmental-Scan_All-Sections_2012-08-21_ES_FINAL.pdf.
\6\ Duclos, C.W., Phillips, M. & LeMaster, Public Law (2004).
Outcomes and Accomplishment sof the circles of Care Planning Efforts.
American Indian Alaska Native Mental Health Research Journal. Retrieved
from http://www.ucdenver.edu/academics/colleges/PublicHealth/research/
centers/CAIANH/journal/Documents/Volume%2011/11(2)_Duclos_Outcomes_and_
Accomplishments_121-138.pdf.
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______
Prepared Statement of the National Kidney Foundation
The National Kidney Foundation is pleased to submit testimony for
the written record in support of the Centers for Disease Control and
Prevention Chronic Kidney Disease Program. We respectively request $2.2
million be provided for fiscal year 2014.
End Stage Renal Disease (ESRD), which requires dialysis or
transplantation for survival, is the only disease-specific coverage
under Medicare, regardless of age or other disability. At the end of
2010, the number of Americans with ESRD totaled more than 594,000,
including 415,000 dialysis patients and almost 180,000 kidney
transplant recipients. Complicating the cost and human toll is the fact
that chronic kidney disease (CKD) is a disease multiplier; patients are
very likely to be diagnosed with diabetes, cardiovascular disease, or
hypertension (40 percent of ESRD patients had a diagnosis of diabetes).
In 2010, CKD was present in 8.4 percent of Medicare beneficiaries but
was responsible for 17 percent of Medicare expenditures.
Despite this tremendous social and economic impact, no national
public health program focusing on early detection and treatment existed
until fiscal year 2006, when Congress provided $1.8 million to initiate
a Chronic Kidney Disease Program at the Centers for Disease Control and
Prevention (CDC). Congressional interest regarding kidney disease
education and awareness also is found in Sec. 152 of the Medicare
Improvements for Patients and Providers Act of 2008 (MIPPA, Public Law
110-275), which directed the Secretary to establish pilot projects to
increase screening for CKD and enhance surveillance systems to better
assess the prevalence and incidence of CKD. Cost-effective treatments
exist to potentially slow progression of kidney disease and prevent its
complications, but only if individuals are diagnosed before the latter
stages of CKD.
The CDC program is designed to identify members of populations at
high risk for CKD, develop community-based approaches for improving
detection and control, and educate health professionals about best
practices for early detection and treatment. The President's budget
request includes provisions calling for the continuation of the
program, however, does not include a line item. The National Kidney
Foundation respectfully urges the Committee to maintain line-item
funding for the Chronic Kidney Disease Program for fiscal year 2014.
The specific inclusion of a line item will ensure the program is
appropriately supported and the continuation of these important
activities. Continued support will benefit kidney patients and
Americans who are at risk for kidney disease, advance the objectives of
Healthy People 2020 and the National Strategy for Quality Improvement
in Health Care, and fulfill the mandate created by Sec. 152 of MIPPA.
The prevalence of CKD in the United States is higher than a decade
earlier. This is partly due to the increasing prevalence of the related
diseases of diabetes and hypertension. It is estimated that CKD affects
26 million adult Americans \1\ and that the number of individuals in
this country with CKD who will have progressed to kidney failure,
requiring chronic dialysis treatments or a kidney transplant to
survive, will grow to 712,290 by 2015.\2\ Kidney disease is the 9th
leading cause of death in the U.S. Furthermore, a task force of the
American Heart Association noted that decreased kidney function has
consistently been found to be an independent risk factor for
cardiovascular disease (CVD) outcomes and all-cause mortality and that
the increased risk is present with even mild reduction in kidney
function.\3\ Therefore addressing CKD is a way to achieve one of the
priorities in the National Strategy for Quality Improvement in Health
Care: Promoting the Most Effective Prevention and Treatment of the
Leading Causes of Mortality, Starting with Cardiovascular Disease.
CKD is often asymptomatic, a ``silent disease,'' especially in the
early stages. Therefore, it goes undetected without laboratory testing.
In fact, some people remain undiagnosed until they have reached CKD
Stage 5 and literally begin dialysis within days. However, early
identification and treatment can slow the progression of kidney
disease, delay complications, and prevent or delay kidney failure.
Accordingly, Healthy People 2020 Objective CKD--2 is to ``increase the
proportion of persons with chronic kidney disease (CKD) who know they
have impaired renal function.'' Screening and early detection provides
the opportunity for interventions to foster awareness, adherence to
medications, risk factor control, and improved outcomes. Additional
data collection is required to precisely define the incremental
benefits of early detection on kidney failure, cardiovascular events,
hospitalization and mortality. Increasing the proportion of persons
with CKD who know they are affected requires expanded public and
professional education programs and screening initiatives targeted at
populations who are at high risk for CKD. As a result of consistent
congressional support, the National Center for Chronic Disease
Prevention and Health Promotion at CDC has instituted a series of
projects that could assist in attaining the Healthy People 2020
objective. However, this forward momentum will be stifled and CDC's
investment in CKD to date jeopardized if line-item funding is not
continued.
As noted in CDC's Preventing Chronic Disease: April 2006, Chronic
Kidney Disease meets the criteria to be considered a public health
issue: (1) the condition places a large burden on society; (2) the
burden is distributed unfairly among the overall population; (3)
evidence exists that preventive strategies that target economic,
political, and environmental factors could reduce the burden; and (4)
evidence shows such preventive strategies are not yet in place.
Furthermore, CDC convened an expert panel in March 2007 to outline
recommendations for a comprehensive public health strategy to prevent
the development, progression, and complications of CKD in the United
States.
The CDC Chronic Kidney Disease program has consisted of three
projects to promote kidney health by identifying and controlling risk
factors, raising awareness, and promoting early diagnosis and improved
outcomes and quality of life for those living with CKD. These projects
have included the following:
(a) Demonstrating effective approaches for identifying individuals
at high risk for chronic kidney disease through State-based screening
(CKD Health Evaluation and Risk Information Sharing, or CHERISH).
(b) Conducting an economic analysis by the Research Triangle
Institute, under contract with the CDC, on the economic burden of CKD
and the cost-effectiveness of CKD interventions.
(c) Establishing a surveillance system for Chronic Kidney Disease.
Development of a surveillance system by collecting, integrating,
analyzing, and interpreting information on CKD using a systematic,
comprehensive, and feasible approach will be instrumental in prevention
and health promotion efforts for this chronic disease. The CDC CKD
surveillance project has built a basic system from a number of data
sources, produced a report and created a website program http://
www.cdc.gov/diabetes/projects/kidney/consisting of information on
preventing and controlling risk factors, the importance of early
diagnosis, and strategies to improve outcomes. The website, publicly
available for clinicians, health professionals, public health policy
makers, and patients, also provides links to a number of publications
and reports. The next steps include exploring State-based CKD
surveillance data ideal for public health interventions through the
State department of health.
We believe it is possible to distinguish between the CKD program
and other categorical chronic disease initiatives at CDC, because the
CKD program does not provide funds to State health departments.
Instead, CDC has been making available seed money for feasibility
studies in the areas of epidemiological research and health services
investigation.
In summary, undetected Chronic Kidney Disease can lead to costly
and debilitating irreversible kidney failure. However, cost-effective
interventions are available if patients are identified in the early
stages of CKD. With the continued expressed support of Congress, the
National Kidney Foundation is confident a feasible detection,
surveillance and treatment program can be established to slow, and
possibly prevent, the progression of kidney disease.
Thank you for your consideration of our testimony.
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\1\ Josef Coresh, et al. ``Prevalence of Chronic Kidney Disease in
the United States,'' JAMA, November 7, 2007.
\2\ D.T. Gilbertson, et al., Projecting the Number of Patients with
End-Stage Renal Disease in the United States to the Year 2015. J Am Soc
Nephrol 16: 3736-3741, 2005.
\3\ Mark J. Sarnak, et al. Kidney Disease as a Risk Factor for the
Development of Cardiovascular Disease: A Statement from the American
Heart Association Councils on Kidney in Cardiovascular Disease, High
Blood Pressure Research, Clinical Cardiology, and Epidemiology and
Prevention. Circulation 2003: 108: 2154-69.
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Prepared Statement of the National League for Nursing
The National League for Nursing (NLN) is the premiere organization
dedicated to promoting excellence in nursing education to build a
strong and diverse nursing workforce to advance the Nation's health.
With leaders in nursing education and nurse faculty across all types of
nursing programs in the United States--doctorate, master's,
baccalaureate, associate degree, diploma, and licensed practical--the
NLN has more than 1,200 nursing school and health care agency members,
37,000 individual members, and 24 regional constituent leagues.
The NLN urges the subcommittee to fund the following Health
Resources and Services Administration (HRSA) nursing programs:
--The Title VIII Nursing Workforce Development Programs at $251.099
million in fiscal year 2014; and
--The Title III Nurse-Managed Health Clinics at $20 million in fiscal
year 2014.
Nursing Education is a Jobs Program
According to the U.S. Bureau of Labor Statistics (BLS), the
registered nurse (RN) workforce will grow by 26 percent from 2010 to
2020, resulting in 711,900 new jobs. This growth in the RN workforce
represents the largest projected numeric job increase from 2010 to 2020
for all occupations. The April 5, 2013, BLS Employment Situation
Summary--March 2013 likewise reinforces the strength of the nursing
workforce to the Nation's job growth. While the Nation's overall
unemployment rate was little changed at 7.6 percent for March 2013, the
employment in health care increased in March with the addition of
23,400 jobs at ambula-tory health care services, hospitals, and nursing
and residential care facilities, amounting to a full 26 percent of all
jobs added in the month.
BLS notes that the health care sector is a critically important
industrial complex in the Nation. It is at the center of the economic
recovery with the number of jobs climbing steadily, in contrast to the
erosion in so many other areas of the economy. Growing even when the
recession began in December 2007, health care jobs are up nationwide by
10.5 percent. Compare that with all other jobs, which still are down,
despite recent gains. If the health care economy had not expanded
during the recession, the national unemployment rate would be 8.8
percent. Health care has been a stimulus program generating employment
and income, and nursing is the predominant occupation in the health
care industry, with more than 3.662 million active, licensed RNs in the
United States in 2013.
The Nursing Workforce Development Programs provide training for
entry-level and advanced degree nurses to improve the access to, and
quality of, health care in underserved areas. The Title VIII nursing
education programs are fundamental to the infrastructure delivering
quality, cost-effective health care. The NLN applauds the
subcommittee's bipartisan efforts to recognize that a strong nursing
workforce is essential to a health policy that provides high-value care
for every dollar invested in capacity building for a 21st century nurse
workforce.
The current Federal funding falls short of the health care
inequities facing our Nation. Absent consistent support, slight boosts
to Title VIII will not fulfill the expectation of generating quality
health outcomes, nor will episodic increases in funding fill the gap
generated by a 15-year nurse and nurse faculty shortage felt throughout
the U.S. health system.
The Nurse Pipeline and Education Capacity
Although the recession resulted in some stability in the short-term
for the nurse workforce, policy makers must not lose sight of the long-
term growing demand for nurses in their districts and States. The NLN's
findings from its Annual Survey of Schools of Nursing--Academic Year
2010-2011 cast a wide net on all types of nursing programs, from
doctoral through diploma, to determine rates of application,
enrollment, and graduation. Key findings include:
--Expansion of nursing education programs impeded by shortage of
faculty.--In fall 2011, the overall capacity of prelicensure
nursing education continued to diminish well short of demand.
Associate degree in nursing (ADN) programs rejected 51 percent
of qualified applications, compared with 36 percent of
baccalaureate of science in nursing (BSN) programs, and 25
percent in diploma programs. The Nation's practical nursing
(PN) programs turned away 41 percent of qualified applications.
With 32.2 percent of pre-licensure RN education programs citing
lack of faculty as the main obstacle to expanding capacity, a
strong correlation exists between the shortage of nurse faculty
and the inability of nursing programs to keep pace with the
demand for new RNs. Increasing the productivity of education
programs is a high priority in most States, but faculty
recruitment is a glaring problem. Without faculty to educate
our future nurses, the shortage cannot be resolved.
--Demand for spots in post-licensure nursing education programs
outstripped supply.--The percentage of programs that turned
away qualified applicants rose among every post-licensure
program type between 2009 and 2011. Most strikingly, the
percentage of master's of science in nursing (MSN) programs
turning away qualified applicants jumped by 15 percent since
2009, i.e., from just one in three programs to almost half in
2011. Emerging from program acceptance rates (a.k.a.
selectivity rates) was evidence of a scarcity of vacancies in
post-licensure nursing programs, thus also indicating that
competition was increasing: In 2011, just over one in four MSN
programs and about one in six doctoral programs were highly
selective. These trends threaten to perpetuate an unsafe cycle,
constraining the number of graduates prepared to take on
faculty roles in nursing schools.
--Yield rates continued to grow.--Yield rates--a classic indicator of
the competitiveness of college admissions--remain
extraordinarily high among pre- and post-licensure nursing
programs. A stunning 92 percent of all applicants accepted into
ADN programs, and 92 percent of those accepted in PN programs,
went on to enroll in 2011. Yield rates among the other program
types were nearly as high, averaging 87 percent for RN-to-BSN
programs; 88 percent for MSN programs; 89 percent for doctoral
programs; 84 percent for RN diploma programs; and 80 percent
for BSN programs.
Equally Pressing is Lack of Diversity
Our Nation is enriched by cultural diversity--37 percent of our
population identify as racial and ethnic minorities. Yet ethnic,
cultural, and gender diversity eludes the nursing student and nurse
educator populations. A survey of nurse educators conducted by the NLN
and the Carnegie Foundation's Preparation for the Professions Program
found that only 7 percent of nurse educators were minorities compared
with 16 percent of all U.S. faculty. The lack of faculty diversity
limits nursing schools' ability to deliver culturally appropriate
health professions education. In addition, the NLN survey for the 2010-
2011 academic year reported that:
--African-American enrollment drops.--The percentage of racial-ethnic
minority students enrolled in pre-licensure RN programs has
declined steadily over the past 2 years--ultimately dropping
from a high of 29 percent in 2009 to 24 percent in 2011. The
majority of that decline stems from a steep reduction in the
percentage of African-American students enrolled in associate
degree nursing programs, which dropped by almost 5 percent to
8.6 percent in just 2 years. BSN programs saw a small, but not
significant drop, in African-American enrollment, down from 13
to 12 percent. Inversely, diploma programs saw a sharp rise in
African-American enrollments, but because they represent just 4
percent of all basic RN programs, the impact is not great.
--Hispanic representation, while still lagging, inches upward.--
Hispanics remain dramatically underrepresented among nursing
students. Representing a mere 6 percent of associate degree and
baccalaureate nursing students, Hispanics were enrolled in
basic nursing programs at less than half the rate at which they
were enrolled in undergraduate programs overall. However, the
percentage of Hispanics enrolled in post-licensure programs has
nearly doubled over the past 2 years at every level. Hispanic
enrollment rose from five to 12 percent in RN-to-BSN programs,
from 5 to 10 percent in MSN programs, and 3 to 6 percent in
doctoral programs. Hispanic enrollment in PN programs also
jumped to over 11 percent in 2011.
--Men's enrollment at historic high.--While significantly less than
the proportion in the U.S. population, at 15 percent, men
enrolled in basic RN programs remained at the historic high
reached at the start of the recession. Across all levels of
nursing education, approximately 13 to 15 percent of nursing
students were male in 2011, with the exception of doctoral
programs where only 9 percent of students were male.
Besides representing an untapped talent pool to remedy the nursing
shortage, ethnic, cultural, and gender-diverse minorities in nursing
are essential to developing a health care system that understands and
addresses the needs of our rapidly diversifying population. Workforce
diversity is needed where research indicates that factors such as
societal biases and stereotyping, communication barriers, limited
cultural sensitivity and competence, and system and organizational
determinants contribute to health care inequities.
Title VIII Federal Funding Reality
Today's undersupply of appropriately prepared nurses and nurse
faculty does not bode well for our Nation. The Title VIII Nursing
Workforce Development Programs are a comprehensive system of capacity-
building strategies that provide students and schools of nursing with
grants to strengthen education programs, including faculty recruitment
and retention efforts, facility and equipment acquisition, clinical lab
enhancements, and loans, scholarships, and services that enable
students to overcome obstacles to completing their nursing education
programs. A few examples of HRSA's Title VIII data below provide
perspective on current Federal investments.
Nurse Education, Practice, Quality, and Retention Grants (NEPQR).--
NEPQR funds projects addressing the critical nursing shortage via
initiatives to expand the nursing pipeline, promote career mobility,
provide continuing education, and support retention. Grantees funded to
support the personal and home health aide purpose of the NEPQR program
trained 1,366 students during fiscal year 2011; and grantees supporting
the nursing assistant and home health aide NEPQR purpose supported
1,810 students.
Nursing Workforce Diversity (NWD).--NWD grants prepare students
from disadvantaged backgrounds to become nurses, producing a more
diverse nursing workforce. Greater diversity among health professionals
is associated with improved access to care for racial and ethnic
minority patients, greater patient choice and satisfaction, and better
patient-clinician communication. In addition, evidence suggests that
minority health professionals are more likely to serve in areas with a
high proportion of uninsured and underrepresented racial and ethnic
groups. In fiscal year 2011, performance data showed that NWD grantees
provided scholarships to 1,270 students, exceeding the performance
target by 72 percent.
Nurse Faculty Loan Program (NFLP).--NFLP supports the establishment
and operation of a loan fund at participating schools of nursing to
assist nurses in completing their graduate education to become
qualified nurse faculty. The NFLP seeks to increase the number and
diversity of qualified nursing faculty. Faculty diversity is an
essential ingredient in the efforts to diversify the nursing education
pipeline and workforce overall. Ongoing NFLP support for faculty
production is critical to building the pipeline needed to assure the
full capacity of the Nation's future nursing workforce. Targeting a
portion of those funds for minority faculty preparation is fundamental
to achieving that goal. In fiscal year 2011, NFLP grantees provided
loans to 2,246 students pursuing faculty preparation at the master's
and doctoral levels, exceeding the program's performance target by 49
percent.
Nurse-Managed Health Clinics (NMHC)
NMHCs are defined as a nurse-practice arrangement, managed by
advanced practice registered nurses, that provides primary care or
wellness services to underserved or vulnerable populations. NMHCs are
associated with a school, college, university, or department of
nursing, federally qualified health center, or independent nonprofit
health or social services agency.
NMHCs deliver comprehensive primary health care services, disease
prevention, and health promotion in medically underserved areas for
vulnerable and specialized populations (e.g., veterans and/or families
of active military). Approximately 58 percent of NMHC patients either
are uninsured, Medicaid recipients, or self-pay. The complexity of care
for these patients presents significant financial barriers, heavily
affecting the sustainability of these clinics. While providing access
points in areas where primary care providers are in short supply,
expansion of NMHCs also increases the number of structured clinical
teaching sites available to train nurses and other primary care
providers. NMHCs continue to collaborate with federally Qualified
Health Centers, Area Health Education Centers, and rural- and
community-based clinics to provide training to some 5,000 nursing and
other health professions students. Appropriating $20 million in fiscal
year 2014 to NMHCs would increase access to primary care for thousands
of uninsured people in underserved urban communities.
The NLN can state with authority that the deepening health
inequities, inflated costs, and poor quality of health care outcomes in
this country will not be reversed until the concurrent shortages of
nurses and qualified nurse educators are addressed. Your support will
help ensure that nurses exist in the future who are prepared and
qualified to take care of you, your family, and all those who will need
our care. Without national efforts of some magnitude to match the
health care reality facing our Nation today, a hardship in nurse
education and its adverse effect in health care generally will be
difficult to avoid.
The NLN urges the subcommittee to strengthen the Title VIII Nursing
Workforce Development Programs by funding them at a level of $251.099
million in fiscal year 2014. We also recommend that the Title III
Nurse-Managed Health Clinics be funded at $20 million in fiscal year
2014.
______
Prepared Statement of the National Marfan Foundation (NMF)
NMF Fiscal Year 2014 LHHS Appropriations Recommendations
--Protect medical research and patient care programs from devastating
funding cuts through sequestration and deficit reduction
activities.
--Provide $7.8 billion for CDC, an increase of $1.7 billion over
fiscal year 2012, including proportional increases for the
National Center for Chronic Disease Prevention and Health
Promotion (NCCDPHP) and the National Center on Birth Defects
and Developmental Disabilities (NCBDDD) to facilitate life
saving awareness and education activities focused on early
recognition and proper diagnosis of Marfan syndrome and related
heritable connective tissue disorders.
--Provide $32 billion for NIH, an increase of $1.3 billion over
fiscal year 2012, including proportional increases for the
National Heart, Lung, and Blood Institute (NHLBI); National
Institute of Arthritis and Musculoskeletal and Skin Diseases
(NIAMS); National Eye Institute (NEI); National Center for
Advancing Translational Sciences (NCATS); Office of Rare
Diseases Research (ORDR); Office of the Director (OD); and
other NIH Institutes and Centers to facilitate adequate growth
in the Marfan syndrome and related heritable connective tissue
disorders research portfolio.
Chairman Harkin, Ranking Member Moran, and distinguished members of
the subcommittee, thank you for the opportunity to submit testimony on
behalf of NMF. It is my honor to represent the estimated 200,000
Americans who are affected by Marfan syndrome or a related heritable
connective tissue disorder.
About NMF
NMF is a non-profit voluntary health organization founded in 1981.
NMF is dedicated to saving lives and improving the quality of life for
individuals and families affected by the Marfan syndrome and related
disorders. The Foundation has three major goals: 1) To provide accurate
and timely information about the Marfan syndrome to affected
individuals, family members, physicians, and other health
professionals. 2) To provide a means for those with Marfan syndrome and
their relatives to share in experiences, to support one another, and to
improve their medical care. 3) To support and foster research.
About Heritable Connective Tissue Disorders
Marfan syndrome is a genetic disorder of the connective tissue that
can affect many areas of the body, including the heart, eyes, skeleton,
lungs and blood vessels. It is a progressive condition and can cause
deterioration in each of these body systems. The most serious and life-
threatening aspect of the syndrome is a weakening of the aorta. The
aorta is the largest artery carrying oxygenated blood from the heart.
Over time, many Marfan syndrome patients experience a dramatic
weakening of the aorta which can cause the vessel to dissect and tear.
Aortic dissection is a leading killer in the United States, and 20
percent of the people it affects have a genetic predisposition, like
Marfan syndrome, to developing the complication. Early surgical
intervention can prevent a dissection and strengthen the aorta and the
aortic valves, especially when preventive surgery is performed before a
dissection occurs.
Deficit Reduction and Sequestration
As you work with your colleagues in Congress on deficit reduction,
budget, and appropriations issues please support the Marfan syndrome
community by actively pursuing meaningful funding increases for
critical medical research and healthcare programs. Our Nation's
investment in biomedical research, particularly through NIH, is an
engine that drives economic growth while improving health outcomes for
patients. NIH currently supports a meaningful research portfolio in
Marfan syndrome coordinated through NIAMS and NHLBI. The research
funded through this portfolio is conducted at academic health centers
across the country, which has a direct impact on local economic
activity. Further, while more work needs to be done, the commitment to
NIH's Marfan syndrome and related disorders research portfolio over the
years has greatly increased our scientific understanding of these
conditions.
If Federal funding for Marfan syndrome research is substantially
reduced, the current effort to capitalize on recent advancements and
develop treatment options will face a serious setback. Ongoing research
projects will stall and critical new research projects, particularly
new activities coordinated by NEI, NCATS, and ORDR will not be
initiated.
In addition, reducing support for Federal biomedical research
efforts sends a powerful message to the next generation about our
country's lack of commitment to this field. Many talented young people
interested in biomedical research will seek other career paths. The
damage done now to the research training and career development
pipeline could last for decades and undermine this country's entire
biomedical research industry. It should also be noted that the next
generation of researchers will face increased competition for their
talents from foreign competitors who are investing in their biomedical
research infrastructure.
The Marfan syndrome community is concerned that if healthcare
programs endure significant funding cuts, patients will see few
improvements in health and healthcare over the coming years.
Centers for Disease Control and Prevention
NMF joins the other voluntary health groups in requesting that you
support CDC by providing the agency with an appropriation of $7.8
billion in fiscal year 2014. Such a funding increase would allow CDC to
undertake critical Marfan syndrome and related connective tissue
disorders education and awareness activities, which would help prevent
deadly thoracic aortic aneurysms and dissections.
In 2010, the American College of Cardiology and the American Heart
Association issued landmark practice guidelines for the treatment of
thoracic aortic aneurysms and dissections. NMF is promoting awareness
of the new guidelines in collaboration with other organizations through
a new Coalition known as ``TAD''; the Thoracic Aortic Disease
Coalition. The TAD Coalition is presently comprised of 10 organizations
that are coordinating efforts to help promote the Guidelines to
healthcare professionals and to raise public awareness of various
aortic diseases and the associated risk factors.
The CDC would be an invaluable partner in the ongoing campaign to
save lives and improve health outcomes by promoting the new Guidelines
to healthcare providers and raising public awareness of risk factors.
In this regard, we ask the subcommittee encourage CDC to identify
appropriate staff at the NCCDPHP and NCBDDD to participate in TAD
Coalition activities. It is our hope that involving CDC in the
activities of the TAD Coalition will lead to a lasting partnership and
collaboration on critical outreach campaigns.
National Institutes of Health
NMF joins the broader public health community in requesting that
you support NIH by providing the agency with an appropriation of $32
billion in fiscal year 2014. This modest 4 percent funding increase
would ensure that biomedical research inflation does not result in a
loss of purchasing power at NIH, critical new initiatives like the
Cures Acceleration Network (CAN) are adequately supported, and that the
Marfan syndrome research portfolio can continue to make progress.
NHLBI.--Critical investment in research activities by NHLBI has
greatly improved our scientific understanding of Marfan syndrome and
related heritable connective tissue disorders. These breakthroughs have
lead to subsequent improvements in healthcare and treatment options.
NIAMS.--The Marfan syndrome and related connective tissue disorders
research portfolio at NIAMS has been crucial to the effort to improve
the lives of individuals living with these conditions. The NIAMS
research portfolio lead the way in identifying many genetic factors for
these conditions and still supports major advances in the
pathophysiology of the disease.
NEI.--Marfan syndrome is associated with eye problems and vision
loss. However, we do not currently have a firm understanding of the
link and NEI is only just beginning to initiate research projects in
this area.
NCATS.--The Office of Rare Diseases Research has long supported
important Marfan syndrome research. Further, emerging programs at NCATS
intended to ensure that scientific breakthroughs are translated to
meaningful treatment options hold tremendous promise for the Marfan
syndrome and heritable connective tissue disorders community.
Thank you for your time and your consideration of these requests.
Please contact me if you have any questions or if you would like any
additional information.
______
Prepared Statement of the National Minority Consortia
The National Minority Consortia (NMC) submits this statement on the
fiscal year 2016 advance appropriations for the Corporation for Public
Broadcasting (CPB) We represent a coalition of five national
organizations, who, with modest support from CPB, bring authentic
stories of diversity to the Nation. We bring unique voices and
perspectives from America's diverse communities into all aspects of
public broadcasting and other media, including content transmitted
digitally over the Internet. Our requests are two: 1) That Congress
direct CPB to meaningfully increase its commitment to diverse
programming and serving underserved communities; and 2) that at least
$445 million be provided in advance fiscal year 2016 funding for CPB.
We ask the Committee to:
(1) Direct CPB to increase its efforts for diverse programming with a
commitment for minority programming and for organizations and stations
located within underserved communities.--We urge Congress in bill and/
or report language to recognize that CPB, while it has enabled
diversity in public broadcasting, still has very far to go. We suggest
language such as:
The Committee recognizes the importance of the partnership
CPB has with the National Minority Consortia, which helps
develop, acquire, and distribute Public Television programming
to serve the needs of African American, Alaska Native, Asian
American, Latino, Native American, and Pacific Islander
peoples. These stories of diversity transcend statistics and
bring universal American stories to all Americans. As
communities across the country welcome increased numbers of
citizens of diverse ethnic backgrounds, local Public Television
stations must strive to meet these viewers' needs. The
Committee encourages CPB to support and expand this critical
partnership, including instituting funding guidelines that
encourage and reward public media that represent and reach a
diverse American public.
CPB has a big responsibility with regard to diversity, yet
the five NMC organizations combined receive only $7.5 million
in discretionary funds from CPB, an amount less than 2 percent
of the CPB budget. And this amount has been decreased by 10
percent due to the sequestration.
(2) Provide fiscal year 2016 advance appropriation for CPB of $445
million, in order to develop content that reaches across traditional
media boundaries, such as those separating television and radio.
While public broadcasting continues to uphold strong ethics
of responsible journalism and thoughtful examination of
American history, life and culture, it has not kept pace with
our rapidly changing demographics. Members of minority groups
continue to be underrepresented on programming and oversight
levels within and in content production. This is unacceptable
in America today, where minorities comprise over 36 percent of
the population. This becomes more urgent now that racial and
ethnic minorities make up more than half of all children born
in the United States today.
Public broadcasting has the potential to be particularly
important for our growing minority and ethnic communities,
especially as we transition to a broadband-enabled, 21st
century workforce that relies on the skills and talent of all
of our citizens. While there is a niche in the commercial
broadcast and cable world for quality programming about our
communities, it is in the public broadcasting sphere where
minority communities and producers should have more access and
capacity to produce diverse high-quality programming for
national audiences. We therefore, urge Congress to insert
strong language in this act to ensure that this is the case and
that these opportunities are made available to minorities and
other underserved communities.
About the National Minority Consortia.--With primary funding
from the CPB, the NMC serves as an important component of
American Public Television content--on air and over the
Internet. By developing and funding diverse content, training
and mentoring the next generation of minority producers and
program managers, as well as brokering relationships between
content makers and distributors, we are in a position to ensure
the future strength and relevance of Public Television and
radio television content from and to our communities.
Each Consortia organization is engaged in cultivating ongoing
relationships with the independent producer community by
providing technical assistance and program funding, support and
distribution. Often the funding we provide is the initial seed
money for a project, that is matched by other public and
private sources, providing true economic development. We also
provide numerous hours of programming to individual Public
Television and radio stations--programming that is beyond the
reach of most local stations. To have a real impact, we need
funding that recognizes and values the full extent of minority
participation in public life. Below is information regarding
each of the five NMC organizations.
Center for Asian American Media (CAAM).--CAAM's mission is to
present stories that convey the richness and diversity of Asian
American experiences to the broadest audience possible. We do
this by funding, producing, distributing and exhibiting works
in film, television and digital media. Over CAAM's 33-year
history they have provided funding to more than 200 projects,
many of which have gone on to win Academy, Emmy and Sundance
awards, examples of which are Days of Waiting; Of Civil Rights
and Wrongs: The Fred Korematsu Story; Maya Lin: A Strong Clear
Vision; The Betrayal (Nerakhoon), Visas and Virtues; and Up the
Yangtze. CAAM presents the annual CAAMFest (formerly known as
the San Francisco International Asian American Film Festival)
and distributes Asian American media to schools, libraries and
colleges. CAAM's newest department, Digital Media, is becoming
a respected leader in bringing innovative content and audience
engagement to public media. CAAM also presented the documentary
on ukulele sensation Jake Shimabukuro: Life on Four Strings on
national PBS with our partner Pacific Islanders in
Communications.
Latino Public Broadcasting (LPB).--LPB supports the
development, production and distribution of public media
content that is representative of the diverse Latino community
in this country. LPB has provided over 170 hours of engaging
Latino programs to the PBS and beyond the broadcast, into
communities, colleges and universities through screenings and
forums. Emmy nominated The Longoria Affair reached over 20,000
participants through forums in 10 States and has become part of
the curriculum in 100 colleges. VOCES on PBS is the only series
on Public Television that explores the rich diversity of the
Latino cultural experience. From its content, LPB creates
standards-based curriculum for the PBS Learning Media, a free
service into the schools with 850,000 registered teachers.
These resources on Latino history and culture enrich the
learning experience of young children, particularly Latinos who
have one of the Nation's highest drop-out rates. In the Fall of
2013, LPB and WETA will present Latino Americans, a 6-part
series on the varied history of Latinos who have helped shape
the Nation over the last 500-plus years and have become, with
more than 50 million people, the largest minority group in the
Nation.
National Black Programming Consortium/Black Public Media
works to increase capacity in diverse communities to create,
distribute and use public media. Throughout its history, its
mission has been two-fold: building capacity in new generations
of creators of social issue media and broadening the pool of
stakeholders in public media institutions. Over the past 6
years, in addition to supporting producers who create
programming for Public Television and other platforms, NBPC/
Black Public Media has convened and mentored over 500 digital
media professionals and created the Public Media Corps (PMC) to
address an urgent need in our communities at the grassroots
level. In 2013, NBPC/Black Public Media presented the fifth
season of the critically-acclaimed series AfroPop: the Ultimate
Cultural Exchange, which features independent perspectives from
the African diaspora, and released the second season of our hit
web exclusive series Black Folk Don't, a documentary satire
that challenges the common stereotypes. In late March, NBPC/
Black Public Media premiers 180 Days: A Year Inside an American
High School, a PBS Special about the challenges of school
reform. ``180 Days'' is connected to CPB's American Graduate
initiative to combat the drop out crisis in American public
schools.
Pacific Islanders in Communications (PIC).--PIC's mission is
to support, advance, and develop Pacific Island media content
and talent that results in a deeper understanding of Pacific
Island history, culture, and contemporary challenges. In
keeping with the mission, PIC helps Pacific Islander stories
reach national audiences through funding support for
productions, training and education, broadcast services, and
community engagement. Last year alone, PIC provided seven hours
of content. In the past 10 years, PIC has produced
approximately 65 hours of programming for national broadcast,
trained over 350 Pacific Islander filmmakers, and have had over
100 community screenings worldwide with more than 54,000 people
in attendance. This year, PIC partnered with National
Geographic to broadcast The Mystery of Easter Island on NOVA,
which refutes earlier claims that the Rapanui people were
responsible for their own cultural destruction and Fixing Juvie
Justice, which explores the Polynesian model of restorative
justice used in the U.S. juvenile criminal system. PIC's series
Pacific Heartbeat, reached over 24 million households last
year. Its second season begins in May 2013.
Vision Maker Media (VMM) (formerly Native American Public
Telecommunications) shares Native stories with the world that
represent the cultures, experiences, and values of American
Indians and Alaska Natives. Founded in 1977, Vision Maker Media
presented seven Native American documentaries to PBS stations
nationwide this year--Grab; Racing the Rez; Standing Bear's
Footsteps; POV: Up Heartbreak Hill; America Reframed: My
Louisiana Love; Sousa on the Rez; and Need to Know: America by
Numbers. We also offered producers and educators numerous
workshops across the Nation. Vision Maker Media programming
reaches beyond the broadcast with interactive web content,
standards-based curriculum, and Viewer Discussion Guides.
Vision Maker Media continues to work with local stations to
bring new voices into the public broadcasting. We developed
community engagement strategies to support CPB's American
Graduate initiative.
Thank you for your consideration of our recommendations. We see new
opportunities to increase diversity in programming, production,
audience, and employment in the new media environment, and we thank
Congress for support of our work on behalf of our communities.
______
Prepared Statement of the National Multiple Sclerosis Society
Mr. Chairman and Members of the Committee, thank you for this
opportunity to provide testimony regarding funding of critically
important Federal programs that impact those affected by multiple
sclerosis. Multiple sclerosis (MS) is an unpredictable, often disabling
disease of the central nervous system that interrupts the flow of
information within the brain, and between the brain and body. Symptoms
range from numbness and tingling to blindness and paralysis. The
progress, severity, and specific symptoms of MS in any one person
cannot yet be predicted, but advances in research and treatment are
moving us closer to a world free of MS. Most people with MS are
diagnosed between the ages of 20 and 50, with at least two to three
times more women than men being diagnosed with the disease.
The National MS Society sees itself as a partner to the Government
in many critical areas. As we advocate for NIH research, we do so as an
organization that funds over $40 million annually in MS research
through funds generated through the Society's fundraising efforts. And
as we advocate for Lifespan Respite funding, we do so as an
organization that works to provide some level of respite relief for
caregivers. So while we're here to advocate for Federal funding, we do
it as an organization that commits tens of millions of dollars each
year to similar or complementary efforts as those being funded by the
Federal Government. Through these efforts, our goal is to see a day
when MS has been stopped, lost functions have been restored, and a cure
is at hand.
We would like to take this time to highlight for the subcommittee
the importance of five key agencies/programs that have a direct impact
on people living with MS as it discusses the fiscal year 2014 budget.
NATIONAL INSTITUTES OF HEALTH
We urge Congress to continue its investment in innovative medical
research that can help prevent, treat, and cure diseases such as MS by
appropriating at least $32 billion in fiscal year 2014.
The NIH is the country's premier institution for medical research
and the single largest source of biomedical research funding in the
world. The NIH conducts and sponsors a majority of the MS related
research carried out in the United States. Approximately $115 million
of fiscal year 2012 and Recovery Act appropriations (the last available
data) were directed to MS-related research. An invaluable partner, the
NIH has helped make significant progress in understanding MS. NIH
scientists were among the first to report the value of MRI in detecting
early signs of MS, before symptoms even develop. Advancements in MRI
technology allow doctors to monitor the progression of the disease and
the impact of treatment.
Research during the past decade has enhanced knowledge about how
the immune system works, and major gains have been made in recognizing
and defining the role of this system in the development of MS lesions.
These NIH discoveries are helping find the cause, alter the immune
response, and develop new MS therapies that are now available to modify
the disease course, treat exacerbations, and manage symptoms. Twenty
years ago there were no MS therapies or medications. Now there are
nine, with the two new oral medications now available and other new
treatments in the pipeline. The NIH provided the basic research
necessary so that these therapies could be developed. Had there been no
Federal investment in research, it's doubtful people living with MS
would have any therapies available. The NIH also directly supports jobs
in all 50 States and 17 of the 30 fastest growing occupations in the
U.S. are related to medical research or health care. More than 83
percent of the NIH's funding is awarded through almost 50,000
competitive grants to more than 325,000 researchers at over 3,000
universities, medical schools, and other research institutions in every
State.
CENTERS FOR MEDICARE & MEDICAID SERVICES
Medicare
Medicare is an extremely important program for many living with MS.
It is estimated that over 20 percent of the MS population relies on
Medicare as its primary insurer. The majority of these individuals are
under the age of 65 and receive the Medicare benefit as a result of
their disability. While sequestration excluded any cuts that would
directly impact Medicare beneficiaries, the Society would like to
remind Congress of the importance of having appropriate reimbursement
levels for physicians to ensure participation in Medicare, promoting
policies to allow access to diagnostics and durable medical equipment
and discouraging overly burdensome cost-sharing for prescription drugs.
Medicaid
The National MS Society urges Congress to maintain funding for
Medicaid and reject proposals to cap or block grant the program.
Medicaid provides comprehensive health coverage to over eight
million persons living with disabilities, plus six million persons with
disabilities who rely on Medicaid to fill Medicare's gaps. The latest
statistics (which are pre-recession) show that about 5-10 percent of
people with MS have Medicaid coverage. While that is a small figure,
for these individuals, Medicaid is truly a safety net. The most
recently available data (2007) reveals that the average annual direct
and indirect (e.g. lost wages) cost for someone with MS in the U.S. is
approximately $69,000. After years of paying to manage their disease,
some people with MS have spent the vast majority of their earnings and
savings, making their financial situation so dire that they meet
Medicaid's low income eligibility requirements.
Some policymakers have proposed capping or block granting Medicaid
or more recently, placing a ``per capita cap'' whereby the Federal
Government would limit each State to a fixed dollar amount per
beneficiary. Any of these proposals would merely shift costs to States,
forcing States to shoulder a seemingly insurmountable financial burden
or cut services on which our most vulnerable rely. It could result in
more individuals becoming uninsured, compounding the current problems
of lack of coverage, overflowing emergency rooms, limited access to
long-term services, and increased healthcare costs in an overburdened
system. Also, by capping funds that support home- and community-based
care, the proposals could lead to an increased reliance on costlier
institutional care that contradicts the principles laid forth in the
1999 U.S. Supreme Court decision Olmstead and integrating and keeping
people with disabilities in their communities.
While the economic situation demands leadership and thoughtful
action, the National MS Society urges Congress to remember people with
MS and all disabilities, their complex health needs, and the important
strides Medicaid has made for persons living with disabilities
particularly in the area of community-based care, and not modify the
program to their detriment.
SOCIAL SECURITY ADMINISTRATION
The National MS Society urges Congress to provide $12.3 billion for
the Social Security Administration's (SSA) administrative budget in
fiscal year 2014.
Because of the unpredictable nature and sometimes serious
impairment caused by the disease, SSA recognizes MS as a chronic
illness or ``impairment'' that can cause disability severe enough to
prevent an individual from working. During such periods, people living
with MS are entitled to and rely on Social Security Disability
Insurance (SSDI) or Supplemental Security Income (SSI) benefits to
survive. People living with MS, along with millions of others with
disabilities, depend on SSA to promptly and fairly adjudicate their
applications for disability benefits and to handle many other actions
critical to their well-being including: timely payment of their monthly
benefits; accurate withholding of Medicare Parts B and D premiums; and
timely determinations on post-entitlement issues, e.g., overpayments,
income issues, prompt recording of earnings.
Providing $12.3 billion would allow SSA to cover inflationary
increases, continue efforts to reduce hearings and disability backlogs,
increase deficit-reducing program integrity work, and replace some
critical staffing losses in SSA's components. It would also help to
minimize the closure of additional field offices. In the last 2 years,
SSA closed a number of field offices due to limited resources. In many
cases, applicants for benefits or those approaching retirement age who
have questions about their eligibility or benefits have been forced to
travel greater distances to visit a Social Security field office.
The disability backlog is also an area of serious concern. Since
fiscal year 2008, the number of claims pending for a disability medical
decision rose from 565,286 to 707,700--an increase of 142,414, or 25.2
percent. Despite the fact that claims have exceeded three million for
four successive years, the current staffing level for DDSs is 14,262,
which is 1,107 (7.2 percent) below the level at the end of fiscal year
2011, and 1,831 (11.3 percent) below the level at the end of fiscal
year 2010. SSA was making progress in addressing the enormous backlog
of hearings cases, but resource issues have magnified the challenges.
In June 2010, the number of pending hearings was down to 694,417 but by
May 2012, it reached an all-time high of 823,828. Even with the
dramatic increase in the volume of new hearing requests filed over the
last few years, processing time has been reduced from 491 days in
fiscal year 2009 to 353 days in September 2012. If SSA does not receive
adequate funding, this progress will regress and the disability
hearings backlog will continue to mount, denying people with MS and
other disabilities timely determinations and dispensing of benefits.
LIFESPAN RESPITE CARE PROGRAM
Up to one quarter of individuals living with MS require long-term
care services at some point during the course of the disease. Often, a
family member steps into the role of primary caregiver to be closer to
the individual with MS and to be involved in care decisions. According
to a 2011 AARP report, 61.6 million family caregivers provided care at
some point during 2009 and the value of their uncompensated services
was approximately $450 billion per year--more than total Medicaid
spending and almost as high as Medicare spending. Family caregivers
allow the person living with MS to remain home for as long as possible
and avoid premature admission to costlier institutional facilities.
Family caregiving, while essential, can be draining and stressful,
with caregivers often reporting difficulty managing emotional and
physical stress, finding time for themselves, and balancing work and
family responsibilities. A 2012 National Alliance for Caregiving (NAC)
survey of individuals providing care to people living with MS shows
that on average, caregivers spend 24 hours a week providing care. Sixty
4 percent of caregivers were emotionally drained, 32 percent suffered
from depression and 22 percent have lost a job due to caregiving
responsibilities. In the broader caregiving community, it has been
estimated that American businesses lose $17.1 to $33.36 billion each
year due to lost productivity costs related to caregiving
responsibilities.
The Lifespan Respite Care Program, signed into law in 2006 by
President Bush, provides competitive grants to States to establish or
enhance statewide lifespan respite programs that better coordinate and
increase access to quality respite care. Respite offers professional
short-term help to give caregivers a break from the stress of providing
care and has been shown to provide family caregivers with the relief
necessary to maintain their own health and bolster family stability.
With Lifespan Respite funding, State grantees have developed or
enhanced statewide databases of respite care services, developed
person-centered respite service options such as vouchers, and trained
more volunteer and paid respite providers.
Perhaps the most critical aspect of the program for people living
with MS is that Lifespan Respite serves families regardless of special
need or age--literally across the lifespan. Much existing respite care
has age eligibility requirements and since MS is typically diagnosed
between the ages of 20 and 50, Lifespan Respite programs are often the
only open door to needed respite services. The National MS Society asks
that Congress preserve funding for the Lifespan Respite program in
fiscal year 2014 so that people with MS can remain at home, and family
caregivers can remain productive members of the community and workforce
and American businesses no longer suffer the monstrous financial impact
caregiver strain currently has on them. For the past few fiscal cycles,
Lifespan Respite has received approximately $2.5 million.
CONCLUSION
The National MS Society thanks the Committee for the opportunity to
provide written testimony and our recommendations for fiscal year 2014
appropriations. The agencies and programs we have discussed are of
vital importance to people living with MS and we look forward to
continuing to working with the Committee to help move us closer to a
world free of MS. Please don't hesitate to contact me with any
questions.
______
Prepared Statement of the National Nursing Centers Consortium
My name is Tine Hansen-Turton, and I am the CEO of the National
Nursing Centers Consortium (NNCC). On behalf of the NNCC, I would like
to thank the members of this subcommittee for the opportunity to submit
testimony regarding the importance of appropriating funds to support
nurse-managed health clinics. Specifically, NNCC and its members
request an appropriation of $20 million to support grants to nurse-
managed health clinics through the Nurse Managed Health Clinic Grant
Program established under Title III of the Public Health Service Act.
NNCC is a 501(c)(3) member association of nonprofit, nurse-managed
health clinics, sometimes called nurse-managed health centers or NMHCs.
The Affordable Care Act (ACA) defines the term `nurse-managed health
clinic' as a nurse practice arrangement, managed by advanced practice
nurses, that provides primary care or wellness services to underserved
or vulnerable populations and that is associated with a school,
college, university or department of nursing, federally qualified
health center (FQHC), or independent nonprofit health or social
services agency.\1\ Currently there are approximately 250 NMHCs in
operation throughout the United States. The Nurse Managed Health Clinic
Grant Program was created to provide NMHCs with a stable source of
Federal funding that would place them on footing similar to other
safety-net providers. Although authorized, to date the Grant Program
has received no appropriations.
The Value of NMHCs and the Need for NMHC Grant Funding
NMHCs Expand Primary Care Workforce Capacity.--The Nation is facing
a primary care crisis that is about to get worse. According to the
Association of American Medical Colleges (AAMC), by 2025 there will be
a dearth of 130,600 physicians, which includes a shortage of 65,800
primary care physicians.\2\ AAMC data also shows that American medical
schools are not graduating enough doctors to meet this need. In fact,
the number of family practice residencies across the Nation has been in
decline for the past 12 years, and medical schools have not filled
available family practice residencies in the past 3 years.\3\ The
Congressional Budget Office estimates the Medicaid expansion called for
by the ACA will lead to 11 million new enrollees.\4\ As these new
enrollees establish primary care homes, the burden on the primary care
workforce is likely to increase dramatically.
Data from Massachusetts shows just how bad the problem could get. A
study conducted 2 years after that State expanded its public coverage
through health care reform legislation found that only 52 percent of
internists in Massachusetts were accepting new patients and one out of
every three family physicians was no longer accepting new patients.\5\
Another study completed 1 year later, found that the average wait time
to see a physician in Boston was 49.6 days, the longest in the
Nation.\6\
NMHCs are primarily managed by nurse-practitioners which make up
the fastest growing segment of primary care providers in the
country.\7\ Currently there are 155,000 NPs in the country and the
numbers are growing quickly.\8\ Because of their growing numbers,
policy makers across the country are calling for nurse practitioners
and NMHCs to assume a greater role in primary care. For example, in its
report, ``The Future of Nursing, Leading Change, Advancing Health,''
the Institute of Medicine (IOM) states, ``advanced practice registered
nurses should be called upon to fulfill and expand their potential as
primary care providers across practice settings based on their
education and competency.'' \9\ When discussing the role of NMHCs, the
IOM report says, ``Nurse-managed health clinics offer opportunities to
expand access; provide quality, evidence-based care; and improve
outcomes for individuals who may not otherwise receive needed care.''
\10\
Along with the IOM, the National Governor's Association (NGA) and
the National Institute for Health Care Reform (NIHCR) have released
reports identifying the greater use of nurse practitioners as a
possible means of alleviating the pressure on the primary care
workforce. The NGA report titled, ``The Role of Nurse Practitioners in
Meeting Increasing Demand for Primary Care,'' was published in December
of 2012. Published in February of 2013, the NIHCR research brief was
titled, ``Primary Care Workforce Shortages: Nurse Practitioner Scope-
of--Practice Laws and Payment Policies.''
As safety-net providers, NMHCs offer medically underserved patients
high quality primary care that is available regardless of the patient's
ability to pay. Because they already serve a high percentage of
Medicaid patients, the clinics are perfectly positioned to fill the
gaps in care that will result from the ACA's proposed Medicaid
expansion. However, because they often cannot meet the requirements for
federally-qualified health center (FQHC) funding, many NMHCs are
struggling financially. The NMHC Grant Program was created to place
NMHCs on a similar footing with other safety-net providers by giving
NMHCs an alternative source of Federal funding.
In order to lessen the primary care crisis, and ensure the
underserved can take full advantage of the care NMHCs offer, NNCC
requests that the subcommittee appropriate funding to the NMHC grant
program. Evidence suggests that doing this will not only expand access
but also lower the cost of care. In addition to having lower labor
costs, research shows that NMHCs cut costs by reducing unnecessary
emergency room visits and hospitalizations.\11\
NMHCs Help Educate the Health Professionals of Tomorrow.--The main
reason NMHCs have difficulty qualifying for FQHC funding is because
many are affiliated with academic schools of nursing. Because
academically-affiliated NMHCs operate under the jurisdiction of a
university, most cannot meet FQHC governance requirements without
breaking their academic connection and giving up their clinical
programs. Ironically, however, these academic affiliations mean that
the NMHC model emphasizes the workforce development that is so needed
with the Medicaid expansion under the Affordable Care Act. NMHCs
naturally serve as community-based clinical training sites for a
diverse group of health profession students including registered nurses
and advance practice nurses (mostly nurse practitioners), medical,
pharmacy, dental, social work, public health, and other students.
In October of 2010, HRSA released $14.8 million in Prevention and
Public Health Fund dollars to fund ten NMHC grants. In addition to
serving over 27,000 patients and recording more than 72,000 encounters,
the NMHC grantees have provided interdisciplinary clinical training to
over 800 health profession students annually.\12\ In 2012, the NNCC
conducted a survey of its members to measure their contribution to
health professions education. Twenty-eight NMHCs in a mix of urban,
rural, and suburban communities reported providing educational
opportunities for nearly 1,500 students.\13\ The average number of
students educated by the NMHC grant funded clinics was 80, while the
clinics participating in the 2012 survey reported educating an average
of 55 students. This data tells us two important things: 1) the
contribution of NMHCs to workforce development is undeniable; 2) the
ability of NMHCs to offer educational opportunities is greatly enhanced
with increased funding.
In post-clinical focus groups students have reported being
``overwhelmingly satisfied'' with their experience in NMHC clinical
rotations. Other feedback suggested that NMHCs are filling a gap in
nursing education by providing community-based experience not found in
other clinical rotations.\14\ The IOM report on the future of nursing
also specifically praised NMHC clinical programs for their emphasis on
interprofessional education which is an important factor in future job
satisfaction, and building a more flexible workforce.
Despite the benefits of NMHC clinical programs, NMHC leaders are
often forced to abandon this important piece of the NMHC model in order
to qualify for FQHC funding. By providing an alternative source of
funding for NMHCs, the Nurse-Managed Health Clinic grant program helps
to preserve the contribution of NMHCs to workforce development. Given
the country's growing need for nurses, NNCC respectfully requests that
the subcommittee members appropriate funding to support clinical
programs and place NMHCs on a similar footing with other safety-net
providers through the NMHC grant program.
Request.--The 10 NMHC grants distributed in 2010 will expire this
year if Congress does not move to appropriate funding to the program.
For all the reasons mentioned above, NNCC respectfully requests an
appropriation of $20 million in fiscal year 2014 for the Nurse-Managed
Health Clinic Grant Program, as authorized under Title III of the
Public Health Service Act.
---------------------------------------------------------------------------
\1\ Section 5208 of the Affordable Care Act.
\2\ American Association of Medical Colleges (AAMC) Center for
Workforce Studies.
\3\ American Association of Medical Colleges (AAMC) Center for
Workforce Studies.
\4\ CBO. Estimates for the Insurance Coverage Provisions of the
Affordable Care Act Updated for the Recent Supreme Court Decision.
(July 2012). p 13.Retrieved on February 28, 2013 from http://
www.cbo.gov/sites/default/files/cbofiles/attachments/43472-07-24-2012-
CoverageEstimates.pdf.
\5\ Massachusetts Medical Society, ``2008 Physician Workforce
Study: Executive Summary,'' available at:www.massmed.org/workforce.
\6\ USA Today, ``Wait Times to See Doctors are Getting Longer,''
available at: http://usatoday30.usatoday.com/news/health/2009-06-03-
waittimes_N.htm.
\7\ Statement of A. Bruce Steinwald, Health Care Director, U.S.
Government Accountability Office, Testimony Before the Committee on
Health, Labor, Pensions, U.S. Senate, February 12, 2008.
\8\
\9\ IOM, ``the Future of Nursing: Leading Change, Advancing
Health,'' page 1-2.
\10\ IOM, ``the Future of Nursing: Leading Change, Advancing
Health,'' page c-4.
\11\ Coddington, J. A. & Sands, L. P. Cost of health are and
quality outcomes of patients at nurse-managed clinics.Nurs Econ, 26(2),
75-83. (2008).
\12\ Special survey of NMHCs funded under the ACA. Conducted by
NNCC in 2011.
\13\ 2012 NNCC member survey.
\14\ Feedback from student focus groups conducted by the Institute
for Nursing Centers in 2009.
---------------------------------------------------------------------------
______
Prepared Statement of the National Primate Research Centers
The Directors of the eight National Primate Research Centers
(NPRCs) respectfully submit this written testimony for the record to
the Senate Appropriations Subcommittee on Labor, Health and Human
Services, Education and Related Agencies. The NPRCs appreciate the
commitment that the Members of this subcommittee have made to
biomedical research through your support for the National Institutes of
Health (NIH) and recommends providing at least $32 billion for NIH in
fiscal year 2014. We believe this amount is the minimum level of
funding needed to accommodate the rising costs of medical research and
to help mitigate the effects of sequestration. The NPRCs also encourage
the subcommittee to work to stop the sequestration cuts to research
funding that squander invaluable scientific opportunities, threaten
medical progress and continued improvements in our Nation's health, and
jeopardize our economic vitality.
The NPRCs respectfully request that the subcommittee provide strong
support for the NIH Office of Research Infrastructure Programs (ORIP),
housed within the NIH Office of the Director, which is the
administrative home of the NPRCs. This support would help to ensure
that the NPRCs and other animal research resource programs continue to
serve effectively in their role as vital national resources.
The mission of the National Primate Research Centers is to use
scientific discovery and nonhuman primate models to accelerate progress
in understanding human diseases, leading to interventions, treatments,
cures, and ultimately to overall better health of the Nation and the
world. The NPRCs collaborate as a transformative and innovative network
to develop and support the best science and act as a resource to the
biomedical research community as efficiently as possible. There is an
exceptional return on investment in the NPRC program; ten dollars is
leveraged for every one dollar of research support for the NPRCs. It is
important to sustain funding for the NPRC program and the NIH as a
whole and to continue to grow and develop the innovative plan for the
future of NIH.
The NPRCs are particularly concerned with the reduction of Federal
funds to support research, including the 5 percent cut in NIH funding
under sequestration. The cuts harm our Nation's ability to advance
scientific discoveries that improve human health, bolster the economy,
and help keep our Nation globally competitive. Furthermore, the impact
of sequestration has been compounded by ongoing funding constraints
caused by 10 years of flat NIH budgets, which have resulted in a loss
of purchasing power and affected the ability of NIH-funded scientists
to pursue promising new avenues of research.
At the same time that scientists are facing these funding
challenges, they are poised like never before to capitalize on
tremendous scientific opportunities and make paradigm-shifting
discoveries to address our Nation's most pressing public health needs.
Budget uncertainty is disruptive to training, careers, long-range
projects, and ultimately, to research progress. To ensure the
successful and efficient advancement of science, the research engine
needs predictable, sustained funding that maximizes the Nation's return
on investment.
Not only is NIH research essential to advancing health, it also
plays a key economic role in communities nationwide. Approximately 85
percent of NIH funding is spent in communities across the Nation,
creating jobs at more than 2,500 research institutes, universities,
teaching hospitals, and other institutions. NIH research also supports
long-term competitiveness for American workers, forming one of the key
foundations for U.S. industries like biotechnology, medical device and
pharmaceutical development, and more.
NPRCs' Contributions to NIH Priorities
The NPRCs' activities are closely aligned with NIH priorities. In
fact, NPRC investigators conduct much of the Nation's basic and
translational nonhuman primate research, facilitate additional vital
nonhuman primate research that is conducted by hundreds of
investigators from around the country, provide critical scientific
expertise, train the next generation of scientists, and advance
cutting-edge technologies.
As a part of the NIH Office of the Director, the NPRCs see a great
opportunity to work with all NIH institutes and centers to further
integrate the consortium as a trans-NIH resource on topics such as
colony management, training, genetics and genome banking. Also, as the
National Center for Advancing Translational Sciences (NCATS) identifies
new approaches to translating basic discoveries into treatments and
therapeutics, the NPRC consortium will work with the new center to
bring to the fore the central role of nonhuman primate research in
developing, and ensuring the effectiveness of, new medical products and
interventions. Finally, we continue to engage as a resource for the
Clinical and Translational Science Award (CTSA) network to help
clinical researchers increase their knowledge of and access to nonhuman
primates as animal models.
Outlined below are a few of the overarching goals and priorities
for the NPRCs, including specifics of how the NPRCs are striving to
achieve these through programs and activities across the centers.
Advance Translational Research Using Animal Models.--Nonhuman
primate models bridge the divide between basic biomedical research and
implementation in a clinical setting. Currently, seven of the eight
NPRCs are affiliated and collaborate with an NIH CTSA program through
their host institution. Specifically, the nonhuman primate models at
the NPRCs often provide the critical translational link between
research with small laboratory animals and studies involving humans. As
the closest genetic model to humans, nonhuman primates serve in the
process of developing new drugs, treatments, and vaccines to ensure
safe and effective use for the Nation's public.
It is neither cost effective nor feasible to reproduce these
specialized facilities and expertise at every research institution, so
the NPRCs are a valuable resource to the research community. Major
areas of research benefiting from the resources of the NPRCs include
AIDS, avian flu, Alzheimer's disease, Parkinson's disease, autism,
cardiovascular disease, diabetes, obesity, asthma, and endometriosis.
To facilitate these and other studies, the NPRC have developed a
resource of over 26,000 nonhuman primates, 70 percent of which are
rhesus monkeys, the most widely used nonhuman primate for HIV research
and a wide range of translational studies.
Strengthen the Research Workforce.--The success of the Federal
Government's efforts in enhancing public health is contingent upon the
quality of research resources that enable scientific research ranging
from the most basic and fundamental to the most highly applied.
Biomedical researchers have relied on one such resource--the NPRCs--for
nearly 50 years for research models and expertise with nonhuman
primates. The NPRCs are highly-specialized facilities that foster the
development of nonhuman primate animal models and provide expertise in
all aspects of nonhuman primate biology. NPRC facilities and resources
are currently used by over 2,000 NIH funded investigators around the
country.
The NPRCs are also supportive of students interested in the
biomedical research at an early age. For example, the Yerkes NPRC
supports a program that connects with local high schools and colleges
in Atlanta, Georgia, and provides high school science students and
teachers with summer-long internships to participate in research
projects taking place at their center. Other NPRCs have similar
programs that help develop a pipeline of aspiring science students and
teachers.
The Need for Facilities Support
The NPRC program is a vital resource for enhancing public health
and spurring innovative discovery. In an effort to address many of the
concerns within the scientific community regarding the need for funding
for infrastructure improvements, the NPRCs support the continuation of
a robust construction and instrumentation grant program at NIH. Animal
facilities, especially primate facilities, are expensive to maintain
and are subject to abundant ``wear and tear.'' The NPRCs are dependent
on strong support for the P51 base grant program which is essential for
the operational costs, and the C06 and G20 programs which support
construction and renovation of animal facilities. Without proper
infrastructure, the ability for animal research facilities, including
the NPRCs, to continue to meet the high demand of the biomedical
research community will be unsustainable.
Thank you for the opportunity to submit this written testimony and
for your attention to the critical need for primate research and the
continuation of infrastructure support. We thank you for your support
of NIH and urge you to provide at least $32 billion for the agency in
the fiscal year 2014 appropriations bill.
______
Prepared Statement of the National Psoriasis Foundation
INTRODUCTION AND OVERVIEW
The National Psoriasis Foundation (the Foundation) appreciates the
opportunity to submit written public witness testimony in support of
$1.2 million in fiscal year 2014 Federal funding for the implementation
of the psoriasis and psoriatic arthritis public health agenda at the
National Center for Health Statistics (NCHS) within the Centers for
Disease Control and Prevention (CDC). The Foundation, the largest
psoriasis patient advocacy organization and charitable funder of
psoriatic disease research worldwide, exists to find a cure for
psoriasis and psoriatic arthritis. Psoriasis, the Nation's most
prevalent autoimmune disease, affecting as many as 7.5 million
Americans, is a noncontagious, chronic, inflammatory, painful and
disabling disease for which there is no cure. It is a systemic disease
that appears on the skin, most often as red, scaly patches that itch,
can bleed and require sophisticated medical intervention. Up to 30
percent of people with psoriasis also develop potentially disabling
psoriatic arthritis that causes pain, stiffness and swelling in and
around the joints. There are other serious risks associated with
psoriasis--for example, diabetes, cardiovascular disease, stroke and
some cancers. Of serious concern is that beyond its terrible physical
and psychosocial toll on individuals, psoriasis costs the Nation $11.25
billion annually.
From an epidemiology standpoint, psoriasis and psoriatic arthritis
in the U.S. population is poorly understood. We do not yet understand
the natural history of these diseases, how it affects various
populations differently, and how real-world treatments impact disease
progression. Much of the current understanding of psoriasis
epidemiology comes from databases from other countries such as the
United Kingdom or Denmark. However, these populations differ
significantly from those in the U.S. with regards to patient
demographics, environmental factors and practice and treatment
patterns.
In an effort to address these gaps in understanding, the Foundation
works with the Nation's research community and policymakers at all
levels of Government to advance policies and programs that will reduce
and prevent suffering from psoriasis and psoriatic arthritis. In 2009,
after examining existing scientific literature, clinical practice and
other components of psoriasis and psoriatic arthritis research and
care, the Foundation's medical and scientific advisors recommended the
creation of a federally-organized public health research program for
psoriasis and psoriatic arthritis to collect the information necessary
to address the key scientific questions in the study and treatment of
psoriatic disease. Responding to this recommendation, recognizing the
significant economic and social costs of psoriasis and psoriatic
arthritis and acknowledging the sizeable gap in the understanding of
these challenging conditions, in fiscal year 2010, Congress provided
$1.5 million to CDC to commence an effort to identify what gaps exist.
CDC has been an excellent steward of this Federal funding, working
diligently to develop a public health agenda for psoriasis while
stretching these dollars over the course of three fiscal years.
Thanks to the initial Congressional appropriation, on February 12,
2013, the CDC released the first-ever public health agenda designed to
address psoriasis and psoriatic arthritis. The agenda, entitled
Developing and Addressing the Public Health Agenda for Psoriasis and
Psoriatic Arthritis, was developed by CDC in collaboration with
clinical, biomedical and public health experts. Working in partnership,
these experts identified gaps and developed a list of priorities to be
addressed by future psoriasis and psoriatic arthritis research efforts.
The identified priorities include:
--Improving the way psoriasis and psoriatic arthritis are diagnosed.
--Examining the relationship between other chronic diseases or
comorbidities with psoriasis and psoriatic arthritis.
--Examining how people with psoriatic diseases access health care,
the cost of their treatments and how the diseases impact their
ability to work.
--Studying the effect of psoriasis and psoriatic arthritis on quality
of life and other outcomes.
Investing in these priority areas of study will generate much-
needed public health data that will help scientists understand the
underlying questions about psoriatic diseases and how they affect a
large population of people, and, in turn, this insight will help
identify the most promising areas of new research to find better
treatments and move the Nation closer to a cure.
As such, we respectfully request that Congress continue to support
this important initiative by appropriating $1.2 million in fiscal year
2014 to enable the NCHS within the CDC to begin to answer the pressing
questions identified in the psoriasis and psoriatic arthritis public
health agenda. federally funded efforts are critical to determine
epidemiology of psoriasis and psoriatic arthritis in Americans, the
associated comorbidities, and impact of treatments in the U.S. With
fiscal year 2014 funding, NCHS will be able to develop and validate
relevant and meaningful questions specific to psoriasis and psoriatic
arthritis. With rigorous sampling methods and survey administration, we
will be able to obtain valuable information from a nationally
representative population to determine the natural history of psoriasis
and psoriatic arthritis in the U.S. population, the effect of
environmental factors on disease progression, the impact and
comorbidities, and the effect of treatments on psoriasis patient
outcomes.
the impact of psoriasis and psoriatic arthritis on the nation
Psoriasis requires steadfast treatment and lifelong attention.
People with psoriasis have significantly higher health care resource
utilization, which costs more than that of the general population. As
noted earlier, of serious and increasing concern is mounting evidence
that people with psoriasis are at elevated risk for other serious,
chronic and life-threatening conditions, including cardiovascular
disease and diabetes. In addition, people with psoriasis experience
higher rates of depression and anxiety, and they die 4 years younger,
on average, than people without the disease.
Despite some recent breakthroughs, many people with psoriasis and
psoriatic arthritis remain in need of effective, safe, long-term and
affordable therapies to allow them to function without both physical
and emotional pain. Due to the nature of the disease, patients often
have to cycle through available treatments, and while there are an
increasing number of methods to control the disease, there is no cure.
Many of the existing treatments can have serious side effects and can
pose long-term risks for patients (e.g., suppress the immune system,
deteriorate organ function, etc.). The lack of viable, long-term
methods of control for psoriasis can be addressed through a robust
Federal commitment to epidemiological, genetic, clinical and basic
research. Research holds the key to improved treatment and diagnosis of
psoriatic disease and, eventually, a cure.
THE ROLE OF CDC IN PSORIASIS AND PSORIATIC ARTHRITIS RESEARCH
Despite our increased understanding of the autoimmune underpinnings
of psoriasis and its treatments, there is a dearth of population-based
epidemiology data on psoriatic disease. Broadly-representative
population-based studies of psoriasis reflecting the full spectrum of
disease are lacking and much-needed because there are still wide gaps
in our knowledge and understanding of psoriatic disease. CDC's
implementation of the psoriasis and psoriatic arthritis public health
agenda will help to provide scientists and clinicians with critical
information to further their understanding of (a) how early
intervention can prevent or delay the development of comorbid
conditions; (b) what factors can trigger flares and remissions; (c)
some of the underlying causes of disease; (d) how differentiating
lifestyle and other environmental triggers might lead to approaches
that minimize exposure to these factors, thus reducing the incidence
and severity of disease; and (e) best practice treatments, which would
assist in improving patient care and outcomes, and in turn, help reduce
health care costs.
PSORIASIS AND PSORIATIC ARTHRITIS RESEARCH AT NIH
It has taken nearly 30 years to understand that psoriasis is, in
fact, not solely a disease of the skin, but also of the immune system.
Recently, scientists identified some of the immune cells involved in
psoriasis, and over the last decade we have seen a surge in the
understanding of these diseases, accompanied by new drug development.
Scientists are poised, as never before, to make major breakthroughs; to
facilitate such advancements, we need increased investment in the
National Institutes of Health (NIH).
Within the NIH, the National Institute of Arthritis and
Musculoskeletal and Skin Diseases (NIAMS) is the principal Federal
Government agency that supports psoriasis research. We commend NIAMS
for its leadership role and very much appreciate its steadfast
commitment to supporting and advancing psoriasis research.
Additionally, we are pleased that research activities that relate to
psoriasis or psoriatic arthritis also have been undertaken within other
NIH institutes and centers; this work is critical given the myriad
comorbidities of psoriasis, as noted earlier. We advocate a strong
Federal investment in genetic, immunological and clinical studies
focused on understanding the mechanisms of psoriasis and psoriatic
arthritis be funded and maintained.
Given the myriad factors involved in psoriatic disease and its
comorbid conditions, the Foundation urges Congress to boost funding for
NIH and NIAMS. We recognize the Nation faces significant budgetary
challenges; however, we believe an increased Federal investment in
biomedical research will help strengthen the economy and our
understanding of psoriatic disease.
CONCLUSION/SUMMARY
On behalf of the more than 7.5 million people with psoriasis and
psoriatic arthritis, I thank the subcommittee for the opportunity to
submit written testimony regarding the fiscal year 2014 investments we
believe are necessary to ensure that our Nation adequately addresses
the needs of individuals and families affected by psoriatic disease. By
allocating $1.2 million to implement CDC's psoriasis and psoriatic
arthritis public health agenda, Congress will help ensure that the
Nation makes progress in understanding the connection between psoriasis
and its comorbid conditions, uncovering the biologic aspects of
psoriasis and other risk factors that lead to higher rates of comorbid
conditions and identifying ways to prevent and reduce the onset of
comorbid conditions associated with psoriasis. Please feel free to
contact the Foundation at any time; we are happy to be a resource to
subcommittee members and your staff.
______
Prepared Statement of National Public Radio
Dear Chairman Harkin, Senator Moran and members of the
subcommittee: My name is Gary E. Knell, and I am the President and CEO.
Thank you for this opportunity to urge the subcommittee's support for
an annual Federal investment of $445 million in public broadcasting
through the Corporation for Public Broadcasting (CPB). With your
support, every American will continue to have free access to the best
in news, information, educational and cultural programming.
As the President and CEO of National Public Radio (NPR), I offer
this testimony on behalf of the public radio system, a uniquely
American public service, non-for-profit media enterprise that includes
NPR, other producers and distributors of public radio programming
including American Public Media (APM), Public Radio International
(PRI), the Public Radio Exchange (PRX), and our more than 950 public
radio station partners , both large and small, that create and
distribute content through the Public Radio Satellite System (PRSS).
Funding provided by Congress to the CPB supports the entire
foundation of a system that has been one of America's most successful
models of a community-centric grant program. The cost of public
broadcasting is only 0.01 percent of the entire Federal budget. The
revenue base provided by Congress enables stations to raise $6 for
every Federal grant dollar. This Federal financial investment permits
local stations to invest more deeply in their own local news and
cultural programming which in turn enables our stations to provide the
American public with an enduring and daily return on investment that is
heard, seen, read, and experienced in public radio broadcasts, apps,
podcasts, and online.
With support from the CPB's community service grants, each of the
hundreds of independently-operated public radio stations creates and
curates the mix of programs that best meets the needs of their local
community. These stations and their programming choices are as diverse
as the people who live in the communities they serve. Some have all-
news formats. Others have all-music formats. Others create a blend of
news, talk, commentary and music into their program offerings. Close to
thirty percent of our stations' daily programming is locally generated.
Every year the Federal Government invests roughly ninety million
dollars in the operation of America's local public radio stations, and
these stations in turn provide service to all of America's
congressional districts and States.
In our congressional testimony last year, we highlighted three
essential contributions of public radio to Americans: our deeply rooted
local community connections from which all staffing, management and
programming decisions are made; public radio's significant and growing
contributions to music and local music economies; and public radio's
indispensable role as a lifeline information source during times of
local and regional crises.
These unique contributions remain clearly in view as public radio
adjusts to America's changing demographics and undergoes renewal to
accommodate the demands of our audience and the opportunities presented
by the march of technology.
Mr. Chairman, 2013 marks the twelfth year of armed overseas
conflict, the longest period of sustained warfare in United States
history. Some 2.3 million Americans have now served in the wars in Iraq
and Afghanistan, with more than thirty-two thousand casualties, and
tens of thousands more enduring the mental strains of combat. Now, with
the military drawdown taking place, these men and women are returning
home, with many facing difficult transitions. NPR and its public radio
station partners are delving deeply into the lives of America's
veterans to foster an understanding of the impact of war to the public
and to policymakers. Unique and dedicated reporting projects like
StoryCorps' Military Voices Initiative allow the stories and lives of
America's veterans to be heard and preserved. We believe that
illuminating these stories will deepen the connections between our
Nation's civilian population and military communities.
When the storm clouds of Hurricanes Isaac and most recently Sandy
gathered, so did the reporters of local public radio stations and NPR.
Stations in the affected areas worked nonstop to deliver updates on
damage, relief assistance, and places of refuge and safety. The public
radio system worked together to bring these local struggles and
challenges to a national audience.
The work of New York Public Radio (WNYC) perfectly illustrates all
of public radio's commitment to nonstop coverage during emergencies and
crises. Despite losing power to its Lower Manhattan headquarters on the
evening Sandy struck, and later its AM transmitter in New Jersey, WNYC
stayed on the air with an emergency generator to provide the critical
news and information its local citizens needed. Its news websites,
wnyc.org and njpublicradio.org, operated on back-up servers to provide
up-to-date news and information, such as its interactive maps that
tracked transit options, flooding and power outages. More than 4.6
million visitors came to its sites for Sandy information.
Public radio's coverage following the terrorist bombing attacks at
the Boston Marathon is another example of the extraordinary power and
reach of our local-national system based on stations. By using our
programming interconnection system, Boston-based WBUR's coverage was
available to all Americans through their local public radio stations.
The station's round-the-clock coverage is best understood in the
following summary by Charles Kravitz, General Manager of WBUR, who
shared this with his station colleagues after that horrible week:
``As I'm sure you agree WBUR simply did its job, as any of
you have done and will do when a major story develops in your
community. That's why we are here. We were writing `the first
rough draft of history' that will no doubt be refined and
examined for years to come. All of your kind words buoyed us
when our energy sagged at the end of some long days.
``The city of Boston was the real hero of this story.
Countless stories, large and small, of sacrifice and bravery,
of loss and grief, painted a tapestry of this complex and
beautiful city that many of us had not seen before. Tragedy, as
you know, will do that. People held hands, strangers hugged
each other and children sang songs which uplifted us. Out of
something terrible came something beautiful.
``It is in this moment that I am reminded of how fortunate I
am, how fortunate we all are, to do the work we do and to serve
the public in such a vital and important way. However imperfect
we are, we make a difference. It is gratifying.''
Public radio's commitment to bring news to all Americans during
emergency events is also reflected in a recent award from the U.S.
Department of Homeland Security (DHS) and the Federal Emergency
Management Agency (FEMA) to NPR Labs. This contract will enable the
demonstration of delivering emergency alerts to deaf or hard-of-hearing
communities in Gulf Coast States through local public radio stations
and the PRSS. This is the first-ever effort to deliver real-time
accessibility-targeted emergency messages, such as weather alerts,
through radio broadcast texts.
Mississippi Congressman Steven Palazzo commented on this activity
by saying:
``As we work to promote disaster preparedness and awareness,
it is important we remember to equip every member of our
communities. This valuable partnership with Mississippi's local
public radio stations promises to expand the reach of our
disaster alert systems, and I can think of no better place to
conduct this trial than the Gulf Coast.''
We are committed to bringing the breadth of America's diverse
voices to our programs so that our audience has the benefit of hearing
the full rundown of ideas, thoughts and policy perspectives that
populate our country's political, cultural and social conversation.
Capturing the diversity of these conversations, including political,
age, racial, ethnic and geographic, is at the center of our mission to
serve as America's public radio.
A further commitment to exploring and serving the changing nature
of America's citizens can be found in our newly launched initiative on
race, ethnicity and culture. With support from the CPB, NPR has formed
a new team of six journalists to identify and report on news and issues
of race and ethnicity, thus presenting new voices that define an
increasingly diverse America.
And lastly, Mr. Chairman, at a time when most other American news
organizations are drawing down on their commitments to cover
international news, NPR is growing its overseas presence. From Mexico
City to Berlin, from Shanghai to Dakar, NPR correspondents based in
eighteen foreign bureaus bring listeners dynamic stories of the world's
people, politics, economies, and cultures. Our reporters live in these
areas and are on the ground for breaking news and in-depth, ongoing
coverage of foreign policy and national security events.
NPR has permanent bureaus throughout the Middle East in order to
fully represent the impact of the region: Islamabad, Istanbul, Kabul,
Beirut, and Jerusalem. Correspondents based in these five cities, along
with those in Cairo, New Delhi, and Jakarta, bring to life the
experiences of people in war-torn regions, keep an eye on U.S. military
engagements abroad, and cover civil uprisings and regime changes.
Recently, the work of Kelly McEvers and Deborah Amos collected the
highest honors in journalism, the DuPont-Columbia and Peabody Awards,
for their coverage of the Syrian conflict. Their recognition truly
reflects the work of many in what is a total team effort. McEver's
stories were edited and overseen by senior staff. Show producers
carefully mixed the stories and the NPR web team wrote compelling text
and found perfect photographs to illustrate them. This is but a single
sampling of an ongoing labor of devotion and professional dedication by
intrepid journalists who are committed to sharing the world's stories,
events and people with America.
Mr. Chairman and Senator Moran, NPR and the public radio system are
committed to being America's public radio where rational, fact-based,
accurate and civil reporting and conversation are our top priorities.
We have no political agenda and we do not take sides. Public radio
plays an important, significant and growing role in news, journalism,
and music and cultural programming. Our stations are essential to, and
part of, the communities they serve.
Public radio stations are reaching audiences wherever they are.
We're embracing America's changing demographics and using digital media
to connect better, more quickly and in more diverse ways. Today's
public radio isn't going away, it's going everywhere--and we are
working every day to earn the trust of the thirty-eight million
Americans who rely on us for news and insights that guide and inform.
______
Prepared Statement of the National Respite Coalition
Mr. Chairman, I am Jill Kagan, Chair of the National Respite
Coalition (NRC), a network of respite providers, family caregivers,
national, State and local agencies and organizations who support
respite. Thirty State respite coalitions are also affiliated with the
NRC. This statement is presented on behalf of these organizations. The
NRC also facilitates the Lifespan Respite Task Force, a coalition of
over 200 national, State and local groups who support the Lifespan
Respite Program and its continued funding. We are requesting that the
subcommittee include $2.5 million for the Lifespan Respite Care Program
administered by ACL/AoA in the fiscal year 2014 Labor, HHS, and
Education Appropriations bill. This amount, very slightly above current
sequestration levels, is the same amount appropriated each year since
2009 and the amount requested by the President in his fiscal year 2014
budget proposal. This will enable:
--State replication of best practices in Lifespan Respite to allow
all family caregivers, regardless of the care recipient's age
or disability, to have access to affordable respite, and to be
able to continue to play the significant role in long-term care
that they are fulfilling today;
--Improvement in the quality of respite services currently available;
--Expansion of respite capacity to serve more families by building
new and enhancing current respite options, including
recruitment and training of respite workers and volunteers; and
--Greater consumer direction by providing family caregivers with
training and information on how to find, use and pay for
respite services.
WHO NEEDS RESPITE?
In 2009, about 61.6 million family caregivers provided care at some
time during the year. The estimated economic value of their unpaid
contributions was approximately $450 billion. This amount is more than
total 2009 Medicaid spending, including both Federal and State
contributions for health care and long-term services and supports ($361
billion). Including caregiving for children with special needs in the
total would add at least 4 to 8 million additional caregivers and
another $50 to $100 billion to the economic value of family caregiving
(Feinberg, L.; Reinhard, S., et al, Valuing the Invaluable: 2011
Update, The Growing Contributions and Costs of Family Caregiving, AARP
Public Policy Institute, 2011).
Family caregiving is not just an aging issue, but also a lifespan
one. While the aging population is growing rapidly, the majority of
family caregivers are caring for someone under age 75 (56 percent); 28
percent of family caregivers care for someone between the ages of 50-
75, and 28 percent care for someone under age 50 (National Alliance for
Caregiving (NAC) and AARP, 2009). Many family caregivers are in the
sandwich generation--46 percent of women who are caregivers of an aging
family member and 40 percent of men also have children under the age of
18 at home (Aumann, Kerstin and Ellen Galinsky, et al. 2008). And 6.7
million children are in the primary custody of an aging grandparent or
other relative.
Families of the wounded warriors, military personnel who returned
from Iraq and Afghanistan with traumatic brain injuries and other
serious chronic and debilitating conditions, don't have full access to
respite. Even with enactment of the new VA Family Caregiver Support
Program, the need for respite will remain high for all veterans and
their family caregivers. Caregivers whose veterans have PTSD are about
half as likely as other caregivers to receive respite (11 percent vs.
20 percent) (NAC, Caregivers of Veterans--Serving On the Homefront,
November 2010). Sixty-eight percent of veterans' caregivers reported
their situation as highly stressful compared to 31 percent of
caregivers nationally, and three times as many say there is a high
degree of physical strain (40 percent vs. 14 percent) (NAC, 2010).
Veterans' caregivers specifically asked for up-to-date lists of respite
providers in their communities and help to find services, the very
thing Lifespan Respite is charged to provide (NAC, 2010).
National, State and local surveys have shown respite to be the most
frequently requested service of the Nation's family caregivers (The
Arc, 2011; National Family Caregivers Association, 2011). Other than
financial assistance for caregiving through direct vouchers payments or
tax credits, respite is the number one national policy related to
service delivery that family caregivers prefer (NAC and AARP, 2009).
Yet respite is unused, in short supply, inaccessible, or unaffordable
to a majority of the Nation's family caregivers. The NAC 2009 survey
found that despite the fact that among the most frequently reported
unmet needs of family caregivers were ``finding time for myself'' (32
percent), ``managing emotional and physical stress'' (34 percent), and
``balancing work and family responsibilities'' (27 percent), nearly 90
percent of family caregivers across the lifespan are not receiving
respite services at all.
An estimated 80 percent of all long-term care in the U.S. is
provided at home. This percentage will only rise in the coming decades
with greater life expectancies of individuals with disabling and
chronic conditions living with their aging parents or other caregivers,
the aging of the baby boom generation, and the decline in the
percentage of the frail elderly who are entering nursing homes.
RESPITE BARRIERS AND THE EFFECT ON FAMILY CAREGIVERS
Barriers to accessing respite include reluctance to ask for help,
fragmented and narrowly targeted services, cost, and the lack of
information about respite or how to find or choose a provider. Even
when respite is an allowable funded service, a critically short supply
of well-trained respite providers may prohibit a family from making use
of a service they so desperately need. Lifespan Respite is designed to
help States eliminate these barriers through improved coordination and
capacity building.
While most families take great joy in helping their family members
to live at home, it has been well documented that family caregivers
experience physical and emotional problems directly related to their
caregiving responsibilities. In a 2009 survey of family caregivers, a
majority (51 percent) who are caring for someone over age 18 have
medium or high levels of burden of care, measured by the number of
activities of daily living with which they provide assistance, and 31
percent were identified as ``highly stressed'' (NAC and AARP, 2009).
While family caregivers of children with special health care needs are
younger than caregivers of adults, they give lower ratings to their
health. Caregivers of children are twice as likely as the general adult
population to say they are in fair/poor health (26 percent vs. 13
percent) (Provisional summary Health Statistics for US Adults, National
Health Interview Survey, 2008, dated August 2009).
The decline of family caregiver health is one of the major risk
factors for institutionalization of a care recipient, and there is
evidence that care recipients whose caregivers lack effective coping
styles or have problems with depression are at risk for falling,
developing preventable secondary complications such as pressure sores
and experiencing declines in functional abilities (Elliott & Pezent,
2008). Care recipients may also be at risk for encountering abuse from
caregivers when the recipients have pronounced need for assistance and
when caregivers have pronounced levels of depression, ill health, and
distress (Beach et al., 2005; Williamson et al., 2001).
Supports that would ease family caregiver stress, most importantly
respite, are too often out of reach or completely unavailable.
Restrictive eligibility criteria also preclude many families from
receiving services or continuing to receive services for which they
once were eligible. Children with disabilities will age out of the
system when they turn 21 and they will lose many of the services, such
as respite. A survey of nearly 5000 caregivers of individuals with
intellectual and developmental disabilities (I/DD) conducted by The Arc
found: the vast majority of caregivers report that they are suffering
from physical fatigue (88 percent), emotional stress (81 percent) and
emotional upset or guilt (81 percent) some or most of the time; 1 out
of 5 families (20 percent) report that someone in the family had to
quit their job to stay home and support the needs of their family
member; and more than 75 percent of family caregivers caring for adult
children with developmental disabilities could not find respite
services (The Arc, 2011). Respite may not exist at all in some States
for individuals with Alzheimer's, those under age 60 with conditions
such as ALS, MS, spinal cord or traumatic brain injuries, or children
with serious emotional conditions.
RESPITE BENEFITS FAMILIES AND IS COST SAVING
Respite has been shown to be an effective way to reduces stress and
improve the health and well-being of family caregivers that in turn
helps avoid or delay out-of-home placements, such as nursing homes or
foster care, minimizes the precursors that can lead to abuse and
neglect, and strengthens marriages and family stability. A new study of
parents of children with autism spectrum disorders found that respite
care was associated with reduced stress and improved marital quality
(Harper, Amber, et al, 2013). A U.S. Department of Health and Human
Services report prepared by the Urban Institute found that higher
caregiver stress among those caring for the aging increases the
likelihood of nursing home entry. Reducing key stresses on caregivers,
such as physical strain and financial hardship, through services such
as respite would reduce nursing home entry (Spillman and Long, USDHHS,
2007). In a recent survey of caregivers of individuals with Multiple
Sclerosis (MS), two-thirds said that respite would help keep their
loved one at home. When the care recipient with MS also has cognitive
impairment, the percentage of those saying respite would be helpful to
avoid or delay nursing home placement jumps to 75 percent (NAC, 2012).
The budgetary benefits that accrue because of respite are just as
compelling. Delaying a nursing home placement for just one individual
with Alzheimer's or other chronic condition for several months can save
Medicaid and other Government programs thousands of dollars.
Researchers at the University of Pennsylvania studied the records of
over 28,000 children with autism ages 5 to 21 who were enrolled in
Medicaid in 2004. They concluded that for every $1,000 States spent on
respite services in the previous 60 days, there was an 8 percent drop
in the odds of hospitalization (Mandell, David S., et al, 2012). In the
private sector, the Metropolitan Life Insurance Company and the
National Alliance for Caregivers found that U.S. businesses lose from
$17.1 billion to $33.6 billion per year in lost productivity of family
caregivers (MetLife and National Alliance for Caregiving, 2006).
Respite for working family caregivers could help improve job
performance and employers could potentially save billions.
LIFESPAN RESPITE CARE PROGRAM WILL HELP
The Federal Lifespan Respite program is administered by the
Administration for Community Living (ACL), Administration on Aging
(AoA), U.S. Department of Health and Human Services (HHS). ACL/AoA
provides competitive grants to eligible State agencies in concert with
Aging and Disability Resource Centers working in collaboration with
State respite coalitions or respite organizations. Congress
appropriated $2.5 million each year from fiscal year 2009-fiscal year
2012 and a slightly lower amount due to sequestration in fiscal year
2013. Since 2009, thirty States and the District of Columbia have
received three-year $200,000 Lifespan Respite Grants from AoA. Nine
States and DC received one-time $150,000 expansion grants to focus on
direct services, especially for those who are unserved. Last year,
seven of the original 2009 grantees received 17-month Integration and
Sustainability grants to continue their important work.
The purpose of the law is to expand and enhance respite services,
improve coordination, and improve respite access and quality. States
are required to establish State and local coordinated Lifespan Respite
care systems to serve families regardless of age or special need,
provide new planned and emergency respite services, train and recruit
respite workers and volunteers and assist caregivers in gaining access
to services. Those eligible would include family members, foster
parents or other adults providing unpaid care to adults who require
care to meet basic needs or prevent injury and to children who require
care beyond that required by children generally to meet basic needs.
Lifespan Respite, defined as a coordinated system of community-
based respite services, helps States use limited resources across age
and disability groups more effectively. Provider pools can be
recruited, trained and shared, administrative burdens reduced by
coordinating resources, and savings used to fund new respite services
for families who do not qualify for any Federal or State program.
HOW IS LIFESPAN RESPITE PROGRAM MAKING A DIFFERENCE?
With limited funds, Lifespan Respite grantees are engaged in
innovative activities such as:
--In TN and RI, the Lifespan Respite program is building respite
capacity by expanding volunteer networks of providers by
recruiting University students or Senior Corps volunteers or
expanding the national TimeBanks model for establishing
voluntary family cooperative respite strategies.
--In Texas, the Lifespan Respite program has established a statewide
Respite Coordination Center, and an online database.
--In SC, the State respite coalition and the Lifespan Respite program
are partnering in new ways with the untapped faith community to
provide respite, especially in rural areas.
--The North Carolina Lifespan Respite Program has challenged each of
its 100 counties to improve respite service delivery locally,
and has partnered with the Money Follows the Person program to
develop family caregiver peer-to-peer support and respite.
--In NH, new providers have been recruited and trained through
partnerships with the NH National Alliance on Mental Illness,
New Hampshire Family Voices, and the College of Direct Support
with funding from the Department of Labor to expand the pool of
respite providers to work with teens and older individuals with
mental health conditions or other groups where respite is in
short supply.
--The AZ Lifespan Respite program housed in Division of Aging and
Adult Services has partnered with their State's Children with
Special Health Care Needs Program to provide respite vouchers
to families in need across the age and disability spectrum.
--The OK Lifespan Respite program partnered with their State's
Federal Transit Administration's Section 5310 transportation
authority to release a van no longer needed by the program to
transport respite volunteers and materials to isolated rural
areas to provide respite in church and community center social
halls.
Across the board, States are building respite registries and ``no
wrong door systems'' in collaboration with State respite coalitions and
Aging and Disability Resource Centers to help family caregivers access
respite and funding sources. OK, AL, NV, TN and others are using
Lifespan Respite grants to expand or implement participant-directed
respite through coordinated voucher systems so that family caregivers
have greater control over the type and quality of the respite they
select. All State grantees secure commitments from partnering State
agencies to share information and coordinate resources to build a
seamless Lifespan Respite system for accessing respite.
Funding must be maintained to help sustain these impressive and
innovative State efforts. The goal of Lifespan Respite System is to
coordinate respite services and funding, maximize existing resources
and leverage new dollars in both the public and private sectors to
build respite capacity and serve the unserved, but States need more
time and fiscal support to do so. Maintaining funding for the program
in fiscal year 2014 could allow several new States to start Lifespan
Respite Programs and help assist at least a few of the remaining
grantees to complete the work that they have started. As it is, given
the limited funding for fiscal year 2013, only 3-5 new States are
expected to be funded and only up to five of the original twenty-four
2009 and 2010 grantees will be funded. Most will be cut off before they
have had a chance to make a lasting impact.
No other Federal program mandates respite as its sole focus. No
other Federal program would help ensure respite quality or choice, and
no current Federal program allows funds for respite start-up, training
or coordination or to address basic accessibility and affordability
issues for families. We urge you to include at least $2.5 million in
the fiscal year 2014 Labor, HHS, Education appropriations bill so that
Lifespan Respite Programs can be replicated and sustained in the States
and more families, with access to respite, will be able to continue to
play the significant role that they are fulfilling today.
______
Prepared Statement of the National Senior Service Corps
Mr. Chairman, Members of the Committee, my name is Gary Goosman and
I am Senior Programs Director of the Corporation for Ohio Appalachian
Development. I testify today on behalf of the National Senior Corps
Association, representing the interests and ideals of more than 400,000
senior volunteers and the directors, staff, and friends of local Foster
Grandparent, Senior Companion, and RSVP programs throughout the
country.
For fiscal year 2014, NSCA requests $110,565,000 for the Foster
Grandparent Program (FGP), $69,300,000 for RSVP (restoring the 20
percent that was cut in fiscal year 2010), and $46,722,000 for the
Senior Companion Program (SCP). This level of funding will provide for
continued support for existing grantees and competition for new
grantees. Our request is composed of the following goals:
--Support for Continuing Services--$244,986,540 (FGP--$110,565,000;
RSVP--$69,300,000; SCP--$46,722,000). These grant funds allow
existing Senior Corps programs and the nearly 400,000
volunteers to continue providing critical services, including:
--Independent living services. SCP volunteers provide companionship
and support needed to help frail seniors remain independent and
in their own homes at a cost lower than institutional care.
RSVP volunteers provide a range of services to frail elders and
people with disabilities, and respite to caregivers to help
preserve independent living and reduce costly
institutionalization.
--Mobilizing volunteers. RSVP volunteers recruit or manage additional
community volunteers to serve in local communities.
--Serving children and vulnerable families. FGP volunteers tutor
children with low literacy skills and mentor troubled teenagers
and young mothers. RSVP volunteers tutor thousands of children,
and steer disadvantaged children and youth toward a more
productive and responsible path.
--Assisting in disaster preparedness and recovery. Often the first
national service participants to respond, RSVP volunteers staff
emergency kitchens and shelters, distribute food and clothing,
and assist in relocating affected individuals and families.
--Assisting with clean energy programs. RSVP volunteers provide home-
based services such as weatherization and handyman assistance
to families in need of extra support.
--Stipend--even though the Kennedy Serve America Act authorizes the
increase in the Federal stipend (for Foster Grandparents and
Senior Companions) from $2.65 to $3.00 per hour we realize that
these are difficult economic times and we would defer this
increase until future budgets have the capacity to include a
stipend increase.
--Silver Scholarships. While current legislation does not exclude
Senior Corps volunteers from receiving Silver Scholarships, it
does not specifically state that they are included. NSCA
requests allowing flexibility in rule interpretation to allow
Senior Corps program eligibility for Silver Scholarships.
Silver Scholarships are $1,000 transferable education awards
for adults age 55 and older who serve 350 hours per year. The
award may be given to their child or grandchild. NSCA requests
$1,000,000 for Silver Scholarships.
SENIOR CORPS is a federally authorized and funded network of
national service programs that provides older Americans with the
opportunity to apply their life experiences to volunteer service.
Senior Corps is comprised of the Foster Grandparent Program, RSVP, and
the Senior Companion Program, through which Americans age 55 and older
provide essential services to cost-effectively address critical
community needs.
Foster Grandparent Program.--27,900 Foster Grandparents in 325
projects provide a cost-effective means to reach and support more than
232,000 at-risk children with special or exceptional needs annually who
otherwise may not have the opportunity to receive individual assistance
and attention from a caring adult. In 2011, Foster Grandparents
volunteered over 24 million hours.
--81 percent of children served demonstrated improvements in academic
performance. Mentored children have reduced truancy resulting
in reduced school costs and, ultimately, reduced high school
dropout rates and increased lifetime earnings.
--90 percent demonstrated increased self-image. This includes
improved health outcomes such as reductions in teen pregnancy
and reduced or delayed use of tobacco, alcohol, or illicit
drugs.
--56 percent reported improved school attendance leading to increased
graduation rates, increased post-secondary education, and
higher lifetime earnings.
--59 percent reported reduction in risky behavior, including reduced
juvenile violence and property crimes, saving victim and court
expenses, costly treatment of juvenile offenders, costs of
adult crime, crime losses of victims and the societal costs of
prosecuting and incarcerating adult offenders.
In 2011, FGP volunteers mentored more than 232,000 children and
youth, of which 5,400 were children of prisoners at high risk of
repeating their parent's path. FGP intervention reduced need for social
services, both short-term costs of counseling and long-term costs of
public assistance.
Based on conservative assumptions about outcomes and valuations,
studies indicate a return benefit of $2.72 for every dollar of
resources used for mentoring programs. (Analyzing the Social Return on
Investment in Youth Mentoring Programs, prepared by: Paul A. Anton,
Wilder Research; and Prof. Judy Temple, University of Minnesota).
Foster Grandparent Program Profiles.--Ethel Goss turned 92 years
old this past January. Before beginning the program in 2010 she had
retired from a receptionist position at a local daycare. When she
called to inquire about the program she had stated that she was bored
and needed to be with children. Kinsey Tumblin Head Start teacher)
writes, ``I have to admit there was a little concern about her age, but
she reassured me that she walked with a cane only because her son made
her! Once I met with Ethel those concerns completely disappeared; I
found her to be quick, alert and full of compassion. As I anxiously
waited to see the assignment plans and progress reporting, it was not a
surprise to me that it was very good news.'' Grandma Ethel had two
children assigned to her, one 3 year old and one 4 year old. The 4 year
old needed individual help with fine motor skills, interaction with
familiar adults, building appropriate vocabulary for obtaining wants,
and to gain positive communication skills. By May; with the one-on-one
mentoring from Grandma Ethel all goals were met, including the
programmatic goal for Head Start Programs.
RSVP.--296,100 RSVP volunteers contributed 62 million hours of
service in 2011 through 685 projects nationwide working with more than
65,000 community organizations. The average cost to support one RSVP
volunteer is approximately $145 a year, whereas the average annual
value per volunteer is more than $3,000. RSVP volunteers saved local
communities more than $1.25 billion in 2011.
RSVP is continually strengthening its leadership role in engaging
volunteers 55+ by providing nonprofit agencies with volunteers trained
to recruit and coordinate other community members in support of the
nonprofits mission and goals. In 2011, RSVP volunteers recruited 38,000
additional community volunteers.
RSVP projects demonstrate that their volunteer services increase
literacy scores for the more than 80,000 children they mentor--the
National Education Association states the lowest hourly rate for
teacher aides is $10.31 reflecting a savings of $16,858,623 in remedial
reading assistance.
--25,000 RSVP volunteers increased the capacity of the organizations
where they serve by enhancing both the quality and quantity of
services.
--In 2011, RSVP volunteers mentored 16,200 children of prisoners at
high risk of repeating their parent's path.
--RSVP volunteers provided 23,300 caregivers with respite services. A
recent AARP survey of working caregivers reports that 30
percent of family caregivers either quit their jobs or reduce
their work hours to take on more care giving responsibilities.
--RSVP volunteers supported 509,000 with Independent Living Services.
--30 percent of RSVP volunteers provided at least one service in the
area of Health/Nutrition which includes in-home and congregate
meals, food distribution/collection, immunization, etc. valued
at more than $27 million.
Senior Companion Program.--13,600 Senior Companions serving in 194
projects provided 12.2 million hours of service helping 60,940 frail,
homebound clients in need of assistance in order to remain living
independently. If all those individuals were instead served in Assisted
Living facilities it would be at a cost of $2,289,637,680. Senior
Companion Program services prevented premature and costly
institutionalization at an annual savings well over $2 billion. The
national average cost for 1 year in a nursing home is $72,270; the
assisted living facility yearly average cost is $37,572. One Senior
Companion volunteer assists 2-6 homebound clients for the annual
investment of $4,800.
Senior Companions offered essential respite to nearly 9,000 primary
caregivers who struggle to remain in the regular workforce while caring
for their loved one. The Family Caregiver Alliance reports that
families with long-term care responsibilities miss an average of 7.5
workdays each year.
The MetLife Caregiving Cost Study of July 2006 reports the
estimated cost to employers of full-time employed intense caregivers at
a total of $17.1 billion in lost productivity annually as well as
absenteeism, workday interruptions, costs due to crisis in care,
supervision costs associated with caregiver employees, costs with
unpaid leave and reducing hours from full-time to part-time.
Clients have significant, long-term mental health benefits and
reduced rates of depression saving $50-$75 a month in medication.
Cost of stress management therapy for one caregiver ($125 per
session) vs. respite provided by volunteer (4 hours of respite care =
$10.60 plus mileage average cost of $3).
Cost for a home health aide after a client's release from the
hospital is $21 per hour as compared to $2.65 per hour for a Senior
Companion volunteer (at no cost to clients).
Senior Companion Program Profile.--Jane H. is in the beginning
stages of Alzheimer's but still has some of her memory. She has a
Senior Companion named Barb. She says Barb is a huge help and provides
personal comfort to her so that she is not alone. Both of her kids work
and she has no one available thru the day. She is always afraid of
falling because she is a little clumsy. Her daughter, Sue, is Director
of the Friendship Center in Carrollton. Sue explained that, ``...having
Barb there gives me a great peace of mind while I'm at work. Our county
has limited services and home visitors aren't available.'' She further
said, ``My brother has a full time job as well and all of his family
works during the day.'' The family takes turns in the evening hours
with Jane. ``Mom doesn't want to be in a nursing home so this program
allows her to stay in her apartment. This is where she is happiest''.
It has been stated that baby boomer and senior volunteers represent
our Nation's single and fastest growing resource. During this
unprecedented economic crisis facing our Nation, the number of baby
boomer and senior volunteers should be greatly expanded and mobilized
as solutions to the problems facing our local communities. NSCA's 2014
budget request will provide the opportunity for thousands more older
adults to serve in their communities and enhance the lives of those
most in need, including children with special needs, the frail and
isolated elderly striving to maintain independence, and expanding the
services of local non-profit agencies.
The 2012 national value of one hour of volunteer service was
estimated at $22.14.
Senior Corps volunteers' 98.2 million service hours in 2012 =
$2.174 billion savings
NSCA recommendations on Re-competition.--While the National Senior
Corps Association supports the level of funding for Senior Corps in the
President's 2014 budget, we also express concern regarding language to
institute re-competition in the Senior Companion and Foster
Grandparent, and changes the authorized language for RSVP as set forth
in the Edward M Kennedy Serve America Act. The National Senior Corps
Association embraces and supports the concept of re-competition for
Senior Corps grants, we feel strongly the responsibility of changing
the law governing the Senior Corps programs rests with the Authorizing
committee. We respectfully request that none of the funds in this Act
may be used to administer re-competition of Senior Corps programs,
except as authorized by the Edward M Kennedy Serve America Act as
enacted.
----------------------------------------------------------------------------------------------------------------
Fiscal Year Fiscal Year
Fiscal Year 2013 Fiscal Year 2014 Fiscal Year
Senior Corps Program 2012 Enacted President's 2013 Enacted President's 2014 NSCA
Requested Request Request
----------------------------------------------------------------------------------------------------------------
Foster Grandparent Program (FGP).......... $110,565,000 $110,565,000 $111,241,000 $110,565,000 $110,565,000
RSVP...................................... 50,204,200 50,299,000 50,511,000 50,204,000 69,300,000
Senior Companion Program (SCP)............ 46,722,000 46,810,000 47,007,000 46,722,000 46,722,000
----------------------------------------------------------------------------------------------------------------
______
Prepared Statement of the National Technical Institute for the Deaf
(NTID)
Mr. Chairman and Members of the Committee: My name is Dr. Gerard J.
Buckley, and I am the President of NTID, and the Vice President and
Dean of RIT. I am pleased to present the fiscal year 2014 budget
request for NTID, one of nine colleges of RIT, in Rochester, N.Y.
Created by Congress by Public Law 89-36 in 1965, we provide university
technical and professional education for students who are deaf and
hard-of-hearing, leading to successful careers in high-demand fields
for a sub-population of individuals historically facing high rates of
unemployment and under-employment. We also provide baccalaureate and
graduate level education for hearing students in professions serving
deaf and hard-of-hearing individuals. NTID students live, study and
socialize with more than 16,000 hearing students on the RIT campus.
Budget Request
On behalf of NTID, for fiscal year 2014 I would like to request
$67,422,000 in Operations. I make this request within the context of
definitive actions taken by NTID to recognize the difficult economic
times in which we operate. In fiscal year 2012 and the first half of
fiscal year 2013, NTID operated with essentially the same level of
Federal support as in fiscal year 2011. In order to manage level
funding, we significantly reduced equipment purchases and eliminated 37
positions--a workforce reduction of 6 percent in the midst of record
enrollments. We have also reduced our budget by an average of 8 percent
in such areas as building and equipment maintenance, instructional
supplies, freelance interpreting, professional travel and student
employment. For several years now, NTID has also postponed requests for
construction funding for critical and long overdue renovations to a 30-
year old building currently housing three times the number of staff for
which it was intended. We have continued to increase tuition and fees,
as these are our primary sources of non-Federal support. From fiscal
year 2006 to fiscal year 2013, tuition and fees have increased by 49
percent to offset the rising costs of providing a state-of-the-art
college education. These non-Federal revenues now represent 27 percent
of our operating budget--up from 9 percent in 1970. Likewise, from
fiscal year 2006 to fiscal year 2012, NTID raised almost $19 million in
support from individuals and organizations.
Our request of $67,422,000 for Operations would help us balance our
budget and reduce the damage we have incurred from sequestration. It is
important to note that this request for fiscal year 2014 is only 3.2
percent more than the fiscal year 2011 operating appropriation and
significantly reduced from our original request of $73,819,000
(including $2,000,000 for construction) submitted to the Department of
Education in June 2012. Despite the measures we have taken to manage
level funding, the 5.23 percent reduction from sequestration is
requiring us to make further cuts in the areas of equipment purchasing,
interpreting and captioning, scholarship support, building maintenance,
and, most importantly, in personnel and enrollment. If the 5.23 percent
reduction stands, we will have to undertake a workforce reduction of up
to 54 filled positions (about 10 percent of our current headcount).
This reduction in staff could result in denying as many as 240
qualified deaf and hard-of-hearing students from enrolling each year.
These are not the consequences a successful Federal investment should
face.
Enrollment
Truly a national program, NTID has enrolled students from all 50
States. Applications for enrollment in fiscal year 2013 (Fall 2012)
were up 9 percent, as we experienced one of the highest enrollments in
our history--1,529 students. Over the last 7 years, our enrollment has
increased 22 percent. For fiscal year 2014, NTID hopes to maintain this
high enrollment, if our operational resources allow us to do so. Our
enrollment history over the last 7 years is shown below:
NTID ENROLLMENTS: FISCAL YEAR 2007-FISCAL YEAR 2013
--------------------------------------------------------------------------------------------------------------------------------------------------------
Deaf/Hard-of-Hearing Students Hearing Students
----------------------------------------------------------------------------- Grand
Fiscal Year Interpreting Total
Undergrad Grad RIT MSSE Sub-Total Program MSSE Sub-Total
--------------------------------------------------------------------------------------------------------------------------------------------------------
2007............................................................ 1,017 47 31 1,095 130 25 155 1,250
2008............................................................ 1,103 51 31 1,185 130 28 158 1,343
2009............................................................ 1,212 48 24 1,284 135 31 166 1,450
2010............................................................ 1,237 38 32 1,307 138 29 167 1,474
2011............................................................ 1,263 40 29 1,332 147 42 189 1.521
2012............................................................ 1,281 42 31 1,354 160 33 193 1,547
2013............................................................ 1,269 37 25 1,331 167 31 198 1,529
--------------------------------------------------------------------------------------------------------------------------------------------------------
MSSE: Master of Science in Secondary Education of Deaf/Hard of Hearing Students.
Grad RIT: other graduate programs at RIT.
NTID Academic Programs
NTID offers high quality, career-focused associate degree programs
preparing students for specific well-paying technical careers. NTID
also is expanding the number of its transfer associate degree programs
to better serve the higher achieving segment of our student population
seeking bachelor's and master's degrees. These transfer programs
provide seamless transition to baccalaureate studies in the other
colleges of RIT. In support of those deaf and hard-of-hearing students
enrolled in the other RIT colleges, NTID provides a range of access
services (including interpreting, real-time speech-to-text captioning,
and notetaking) as well as tutoring services. One of NTID's greatest
strengths is our outstanding track record of assisting high-potential
students to gain admission to, and graduate from, the other colleges of
RIT at rates comparable to their hearing peers.
A cooperative education (co-op) component is an integral part of
academic programming at NTID and prepares students for success in the
job market. A co-op gives students the opportunity to experience a
real-life job situation and focus their career choice. Students develop
technical skills and enhance vital personal skills such as teamwork and
communication, which will make them better candidates for full-time
employment after graduation. Almost 300 students last year participated
in 10-week co-op experiences that augment their academic studies,
refine their social skills, and prepare them for the competitive
working world.
Student Accomplishments
For our graduates, over the past 5 years, an average of 91 percent
have been placed in jobs commensurate with the level of their
education. Of our fiscal year 2011 graduates (the most recent class for
which numbers are available), 54 percent were employed in business and
industry, 31 percent in education/non-profits, and 15 percent in
Government.
Graduation from NTID has a demonstrably positive effect on
students' earnings over a lifetime, and results in a notable reduction
in dependence on Supplemental Security Income (SSI) and Social Security
Disability Insurance (SSDI). In fiscal year 2012, NTID, the Social
Security Administration, and Cornell University examined earnings and
Federal program participation data for more than 15,000 deaf and hard-
of-hearing individuals who applied to NTID over our entire history. The
studies show that NTID graduates over their lifetimes are employed at a
much higher rate, earn substantially more (therefore paying
significantly more in taxes), and participate at a much lower rate in
SSI and SSDI than students who withdrew from NTID.
Using SSA data, at age 50, 78 percent of NTID deaf and hard-of-
hearing graduates with bachelor degrees and 73 percent with associate
degrees report earnings, compared to 58 percent of NTID deaf and hard-
of-hearing students who withdrew from NTID. Equally important is the
demonstrated impact of an NTID education on graduates' earnings. At age
50, $58,000 is the median salary for NTID deaf and hard-of-hearing
graduates with bachelor degrees and $41,000 for those with associate
degrees, compared to $34,000 for deaf and hard-of-hearing students who
withdrew from NTID. Higher earnings, of course, yield higher tax
revenues.
An NTID education also translates into reduced dependency on
Federal transfer programs, such as SSI and SSDI. At age 40, less than 2
percent of NTID deaf and hard-of-hearing associate and bachelor degree
graduates participate in the SSI program compared to 8 percent of deaf
and hard-of-hearing students who withdrew from NTID. Similarly, at age
50, only 18 percent of NTID deaf and hard-of-hearing bachelor degree
graduates and 28 percent of associate degree graduates participate in
the SSDI program, compared to 35 percent of deaf and hard-of-hearing
students who withdrew from NTID.
Access Services
NTID provides an access services system to meet the needs of a
large number of deaf and hard-of-hearing students enrolled in
baccalaureate and graduate degree programs in RIT's other colleges as
well as students enrolled in NTID programs who take courses in the
other colleges of RIT. Access services also are provided for events and
activities throughout the RIT community. Access services include sign
language interpreting, real-time captioning, classroom notetaking
services, captioned classroom video materials, and Assistive Listening
Services.
As enrollments have steadily increased, so has the demand for
access services. In fiscal year 2012, 129,900 hours of interpreting
were provided--an increase of 14 percent compared to fiscal year 2008.
In fiscal year 2012, 19,516 hours of real-time captioning were provided
to students--a 17 percent increase over fiscal year 2008. The increase
in demand is partly a result of the increase in the number of students
enrolled in baccalaureate programs at RIT and the number of students
with cochlear implants. In fiscal year 2013, there were 551 deaf and
hard-of-hearing students enrolled in baccalaureate programs at RIT, a
22 percent increase compared to fiscal year 2008, and 356 students with
cochlear implants--a 40 percent increase over fiscal year 2008.
Summary
It is extremely important that our fiscal year 2014 funding request
be granted in order that we might continue our mission to prepare deaf
and hard-of-hearing people to enter the workplace and society. NTID has
shown through hard data that our graduates have higher salaries, pay
more taxes, and depend less on Federal SSI/SSDI payments than their
counterparts who do not attend NTID. Our employment rate is 91 percent
over the past 5 years--even more remarkable given the state of the
economy. Demand for an NTID education is higher than ever. Therefore, I
ask that you please consider funding our request of $67,422,000 for
Operations.
We are hopeful that the Members of the Committee will agree that
NTID, with its long history of successful stewardship of Federal funds
and outstanding educational record of service with people who are deaf
and hard-of-hearing, remains deserving of your support and confidence.
Likewise, we will continue to demonstrate to Congress and the American
people that NTID is a proven economic investment in the future of young
deaf and hard-of-hearing citizens. Quite simply, NTID is a Federal
program that works.
______
Prepared Statement of the National Violence Prevention Network
Thank you for this opportunity to submit testimony in support of
increased funding for the National Violent Death Reporting System
(NVDRS), which is administered by the National Center for Injury
Prevention and Control at the Centers for Disease Control and
Prevention (CDC). The National Violence Prevention Network, a broad and
diverse alliance of health and welfare, suicide and violence
prevention, and law enforcement advocates supports increasing the
fiscal year 2014 funding level to $25 million to allow for nationwide
expansion of the NVDRS program. fiscal year 2013 NVDRS funding is $3.5
million.
Background
Each year, about 55,000 Americans die violent deaths. Suicide and
homicide are the fourth and fifth leading causes of death for Americans
of all ages. In addition, an average of 105 people (22 of which are
military veterans) take their own lives each day.
The NVDRS program makes better use of data that are already being
collected by health, law enforcement, and social service agencies. The
NVDRS program, in fact, does not require the collection of any new
data. Instead it links together information that, when kept in separate
compartments, is much less valuable as a tool to characterize and
monitor violent deaths. With a clearer picture of why violent deaths
occurs, law enforcement, public health officials and others can work
together more effectively to identify those at risk and target
effective preventive services.
Currently, NVDRS funding levels only allow the program to operate
in 18 States, including Alaska, Colorado, Georgia, Kentucky, Maryland,
Massachusetts, Michigan, New Jersey, New Mexico, North Carolina, Ohio,
Oklahoma, Oregon, Rhode Island, South Carolina, Utah, Virginia, and
Wisconsin. Six additional States; Connecticut, Illinois, Maine,
Minnesota, New York, and Texas plus the District of Columbia, were
previously approved for participation in the NVDRS, but were unable to
join due to funding shortfalls. Several other States have expressed an
interest in joining once new funding becomes available. While NVDRS is
beginning to strengthen violence and suicide prevention efforts in the
18 participating States, non-participating States continue to miss out
on the benefits of this important public health surveillance program.
NVDRS in Action
Child abuse and other violence involving children and adolescents
remains a problem in America, and it is only through a comprehensive
understanding of its root causes that these needless deaths can be
prevented. Studies suggest that between 3.3 and 10 million children
witness some form of domestic violence annually. Additionally, 1,560
children died as a result of abuse or neglect in 2010.
Children are most vulnerable and most dependent on their caregivers
during infancy and early childhood. Sadly, NVDRS data has shown that
young children are at greatest risk of homicide in their own homes.
Combined NVDRS data from Alaska, Maryland, Massachusetts, New Jersey,
Oregon, South Carolina, and Virginia determined that African American
children aged 4 years old and under are more than four times more
likely to be victims of homicide than Caucasian children, and that
homicides of children aged four and under are most often committed by a
parent or caregiver in the home. The data also shows that household
items, or ``weapons of opportunity,'' were most commonly used,
suggesting that poor stress responses may be factors in these deaths.
Knowing the demographics and methods of child abusers can lead to more
effective, targeted prevention programs.
Intimate partner violence (IPV) is another issue where NVDRS is
proving its value. While IPV has declined along with other trends in
crime over the past decade, thousands of Americans still fall victim to
it every year. Intimate partner homicides accounted for 30 percent of
the murders of women and 5 percent of the murders of men in 2006,
according to the Bureau of Justice Statistics.
Despite being in its early stages in several States, NVDRS is
already providing critical information that is helping law enforcement
and public health officials allocate resources and develop programs in
ways that target those most at risk for intimate partner violence. For
example, NVDRS data shows that while occurrences are rare, most murder-
suicide victims are current or former intimate partners of the suspect,
and a substantial number of victims were the suspect's children. In
addition, NVDRS data indicate that women are about seven times more
likely than men to be killed by a spouse, ex-spouse, lover, or former
lover, and most of these incidents occurred in the women's homes.
NVDRS & VA Suicides
Although it is preventable, every year more than 38,000 Americans
die by suicide and another one million Americans attempt it, costing
more than $36 billion in lost wages and work productivity. In the
United States today, there is no comprehensive national system to track
suicides. However, because NVDRS includes information on all violent
deaths--including deaths by suicide--information from the system can be
used to develop effective suicide prevention plans at the community,
State, and national levels.
The central collection of this data can be of tremendous value for
organizations such as the Department of Veterans Affairs that are
working to improve their surveillance of suicides. For instance, CDC
determined from national NVDRS data that veterans comprised 20 percent
of all suicide victims. The types of data collected by NVDRS including
gender, blood alcohol content, mental health issues, physical health
issues, and intimate partner violence can help prevention programs
better identify and treat at-risk individuals.
Federal Role Needed
At an estimated annual cost of $25 million for full implementation,
NVDRS is a relatively low-cost program that yields high-quality
results. While State-specific information provides enormous value to
local public health and law enforcement officials, data from all 50
States, the U.S. territories and the District of Columbia must be
obtained to complete the national picture. Aggregating this additional
data will allow us to analyze national trends and also more quickly and
accurately determine what factors can lead to violent death so that we
can devise and disseminate strategies to address those factors.
Strengthening and Expanding NVDRS in Fiscal Year 2014
In January 2013, President Obama and Vice President Biden released,
``Now Is The Time: The President's Plan to Protect our Children and our
Communities by Reducing Gun Violence.'' Recognizing the utility of
NVDRS in understanding violence, one of the major strategies in the
report calls for an infusion of $20 million for NVDRS to facilitate its
nationwide expansion.
The National Violence Prevention Network, a coalition of national
organizations that advocate for national violence prevention programs,
is supporting the Administration's request by calling on Congress to
provide $25 million for NVDRS in fiscal year 2014. As State funding is
based on population and violent death rates, significant funding
increases are necessary to incorporate larger States into the program.
However, the cost of not implementing the program is much greater:
without national expansion of the program, thousands of American lives
remain at risk.
We thank you for the opportunity to submit this statement for the
record. The investment in NVDRS has already begun to pay off as the 18
participating States are adopting effective violence prevention
programs. We believe that national implementation of NVDRS is a wise
public health investment that will assist State and national efforts to
prevent deaths from domestic violence, veteran suicide, teen suicide,
gang violence and other violence that affects communities around the
country. We look forward to working with you secure an fiscal year 2014
NVDRS appropriation of $25 million.
______
Prepared Statement of Nemours
Nemours thanks Chairman Harkin, Ranking Member Moran and members of
the subcommittee for the opportunity to submit written testimony on the
fiscal year 2014 Labor, Health & Human Services, Education and Related
Agencies Appropriations bill. Nemours, one of the Nation's leading
child health systems, is dedicated to improving children's health and
well-being by offering a spectrum of clinical treatment, research,
advocacy, educational health, and prevention services extending to
families in the communities it serves.
About Nemours
Nemours is an internationally recognized children's health system
that owns and operates the Alfred I. duPont Hospital for Children in
Wilmington, Delaware, along with major pediatric specialty clinics in
Delaware, Florida, Pennsylvania and New Jersey. In October 2012, we
opened the full-service Nemours Children's Hospital in Orlando,
Florida. The Nemours promise is to do whatever it takes to treat every
child as we would our own. We are committed to making family-centered
care the cornerstone of our health system.
Established as The Nemours Foundation through the legacy and
philanthropy of Alfred I. duPont, Nemours offers pediatric clinical
care, research, education, advocacy and prevention programs to families
in the communities we serve. We leverage our entire system to improve
the health of our communities by creating unique models, creating new
points of access and delivering superlative outcomes. Our investment in
children is a response to community health needs as Nemours aims to
fulfill our mission to provide leadership, institutions and services to
restore and improve the health of children through care and programs
not readily available.
Community-based Prevention
As an integrated health system that is very engaged with the
community, Nemours sees first-hand the impact of chronic disease on our
Nation's children. We treat obese young children at our clinics, and we
know that unhealthy habits that contribute to obesity are starting at a
very young age. In fact, over twenty-seven percent of children ages 2-5
are obese or overweight--an alarming statistic. We know that much of
what influences their health is outside the realm of the health care
system, which is why we have made and will continue to make significant
investments in community-based prevention, in sectors where children
learn, live, and play. We believe that investing in clinical and
community-based prevention is an important way to ensure that children
grow up to be healthy adults. The Prevention and Public Health Fund
(Fund) holds the potential to address obesity and chronic disease and
ultimately reduce our Nation's health care costs over a lifetime.
We are mindful of the continued efforts to make significant cuts to
the Fund. However, we believe strongly that crucial elements of health
care reform and prevention should not be pitted against one another.
For example, physicians must be enlisted in the fight to prevent
disease and should be working closely with other community-based
partners to help families and children lead healthy, active lifestyles,
as is the case with Nemours-employed physicians. We urge the Committee
to utilize the resources provided from the Fund to support the
integration of clinical and community-based prevention and to evaluate
the outcomes associated with those investments.
The National Early Childcare and Education Learning Collaboratives
(CDC)
The National Early Childcare and Education (ECE) Learning
Collaboratives program is uniquely focused on working with early child
care and education providers to help children eat healthy and be
physically active.
As one of the Nation's leading child health organizations, with
significant expertise impacting local, State and national obesity
prevention initiatives in early care and education settings, Nemours
and its partners, including the National Initiative for Children's
Healthcare Quality, Child Care Aware of America, American Academy of
Pediatrics, and other strategic partners in ECE and public health, will
implement evidence-based, practice-tested learning collaboratives in
partnership with six States--Arizona, Florida, Indiana, Kansas,
Missouri, and New Jersey--reaching over 400,000 children over the
course of the five-year project.
Ultimately, the goal is to spread impactful, sustainable program-
level changes to transform early childcare and education programs. In
particular, continued funding for the ECE project will help early-care
and education providers (initially ECE centers, and later family child
care settings as well) in these six States adopt nutrition,
breastfeeding support, physical activity, and screen time policies and
practices.
Through the ECE project, Nemours and its partners also will create
a new resource, the National ECE Technical Assistance and Support
Center for Quality Improvement (National TA Center) to provide targeted
support to the learning collaboratives and participating programs and
support quality improvement capacity within State ECE systems to
promote additional spread and sustainability.
As a Nation, we face daunting economic and fiscal challenges. To a
large degree, these challenges are driven by high health care costs.
Preventable chronic diseases account for approximately 75 percent of
our Nation's annual $2.5 trillion in health care spending. We believe
Federal investment in approaches that help instill healthy habits early
in a child's life can help bring down these costs. For these reasons,
we urge the subcommittee to provide $4.2 million for the ECE program in
fiscal year 2014, which is consistent with the fiscal year 2012 funding
level for the program.
Children's Hospital Graduate Medical Education (HRSA)
Another important priority for Nemours is the health care
workforce, particularly the pediatric workforce. Children's hospitals
care for large numbers of children with highly complex medical needs.
Cutting edge, superior quality clinical care requires that hospitals
invest time and resources in training residents on how to provide the
best, most-effective treatments for this population. The Children's
Hospital Graduate Medical Education program (CHGME) provides support
for graduate medical education to freestanding children's hospitals
that train resident physicians. The CHGME program helps address
shortages in the pediatric workforce in both general (primary care)
pediatrics and in pediatric sub-specialties.
The CHGME program has increased the number of pediatric providers,
addressed critical shortages in pediatric specialty care, and improved
children's access to care. CHGME ensures that general pediatricians and
pediatric specialists are trained to care for children in communities
across the country--metropolitan cities, rural communities, suburbs and
everywhere in between--covering everything from well-child visits to
the most complex cardiac surgeries. Today, the children's hospitals
that receive CHGME, less than 1 percent of all hospitals, train more
than 49 percent of general pediatricians and 51 percent of pediatric
specialists.
Over 300 residents are trained each year at the Alfred I. duPont
Hospital for Children (AIDHC) in Wilmington, DE. They are on the front
line for families at our hospital, caring for patients 24 hours a day.
They are also training to become future clinicians who will practice
independently in general pediatrics specialties and subspecialties. In
the outpatient department, they become the primary care physicians
(under attending supervision) for numerous children. Residents are also
learning to become researchers and are actively engaged in local
community and international volunteer efforts to reach medically-
underserved children.
Unfortunately, the President's fiscal year 2014 budget request once
again proposes reducing funding for this program to $88 million. We
urge Congress to reject this ill-advised cut and to continue providing
adequate support for training the next generation of pediatricians,
pediatric specialists and pediatric researchers. In fiscal year 2014,
Nemours urges the subcommittee to provide funding at the fully-
authorized level of $317.5 million. However, in this difficult fiscal
environment, we urge that funding for the CHGME program not dip below
$265.2 million, which was the level prior to sequester.
Conclusion
Nemours appreciates the opportunity to submit written testimony. As
an integrated child health system, we have prioritized investments in
clinical and community-based prevention and our workforce because we
believe that in the long-run these investments will improve health for
children and bend the health care cost curve. We recognize that the
Nation's fiscal situation requires a close examination of the programs
and priorities that the Federal Government funds. As you make these
critical funding decisions, we hope that prevention and the future
health care workforce will remain priorities of the subcommittee in
fiscal year 2014.
______
Prepared Statement of the NephCure Foundation
SUMMARY OF RECOMMENDATIONS FOR FISCAL YEAR 2014
_______________________________________________________________________
1) $32 billion for the National Institutes of Health (NIH) and a
corresponding increase to the National Institute of Diabetes and
Digestive and Kidney Diseases (NIDDK).
2) Continued support for the Grants for Research in Glomerular
Diseases Initiative and the Advancing Clinical Research in Primary
Glomerular Diseases Program at NIDDK, as well as the Nephrotic Syndrome
Study Network at the Office of Rare Diseases Research (ORDR).
3) Expansion of the FSGS/NS Research Portfolio at NIDDK, the
Office of Rare Diseases Research (ORDR) and the National Institute on
Minority Health and Health Disparities (NIMHD) by funding more research
proposals for Primary Glomerular Disease.
_______________________________________________________________________
Thank you for the opportunity to present the views of the NephCure
Foundation regarding research on idiopathic focal segmental
glomerulosclerosis (FSGS) and primary nephrotic syndrome (NS). NephCure
is the only non-profit organization exclusively devoted to fighting
FSGS and the NS disease group. Driven by a panel of respected medical
experts and a dedicated band of patients and families, NephCure works
tirelessly to support kidney disease research and awareness.
NS is a collection of signs and symptoms caused by diseases that
attack the kidney's filtering system. These diseases include FSGS,
Minimal Change Disease and Membranous Nephropathy. When affected, the
kidney filters leak protein from the blood into the urine and often
cause kidney failure, which requires dialysis or kidney
transplantation. According to a Harvard University report, 73,000
people in the United States have lost their kidneys as a result of
FSGS. Unfortunately, the causes of FSGS and other filter diseases are
poorly understood.
FSGS is the second leading cause of NS and is especially difficult
to treat. There is no known cure for FSGS and current treatments are
difficult for patients to endure. These treatments include the use of
steroids and other dangerous substances which lower the immune system
and contribute to severe bacterial infections, high blood pressure and
other problems in patients, particularly child patients. In addition,
children with NS often experience growth retardation and heart disease.
Finally, NS caused by FSGS, MCD or MN is idiopathic and can often
reoccur, even after a kidney transplant.
FSGS disproportionately affects minority populations and is five
times more prevalent in the African American community. In a
groundbreaking study funded by NIH, researchers found that FSGS is
associated with two APOL1 gene variants. These variants developed as an
evolutionary response to African sleeping sickness and are common in
the African American patient population with FSGS/NS.
FSGS has a large social impact in the United States. FSGS leads to
end-stage renal disease (ESRD) which is one of the most costly chronic
diseases to manage. In 2008, the Medicare program alone spent $26.8
billion, 7.9 percent of its entire budget, on ESRD. In 2005, FSGS
accounted for 12 percent of ESRD cases in the U.S., at an annual cost
of $3 billion. It is estimated that there are currently approximately
23,000 Americans living with ESRD due to FSGS.
Research on FSGS could achieve tremendous savings in Federal health
care costs and reduce health status disparities. For this reason, and
on behalf of the thousands of families that are significantly affected
by this disease, we encourage support for expanding the research
portfolio on FSGS/NS at the NIH.
Encourage FSGS/NS Research at NIH
There is no known cause or cure for FSGS and scientists tell us
that much more research needs to be done on the basic science behind
FSGS/NS. More research could lead to fewer patients undergoing ESRD and
tremendous savings in health care costs in the United States.
With collaboration from other Institutes and Centers, ORDR
established the Rare Disease Clinical Research Network. This network
provided an opportunity for the NephCure Foundation, the University of
Michigan, and other university research health centers to come together
to form the Nephrotic Syndrome Study Network (NEPTUNE). NEPTUNE is
developing a database of NS patients who are interested in
participating in clinical trials which would alleviate the problem
faced by many rare disease groups of not having access to enough
patients for research. NephCure urges the subcommittee to continue its
support for RDCRN and NEPTUNE, which has tremendous potential to
facilitate advancements in NS and FSGS research.
The NephCure Foundation is also grateful to NIDDK for issuing
program announcements (PA) that serve to initiate grant proposals on
primary glomerular disease. Two PAs that have recently been issued
utilize the R01 and UM1 mechanisms to award funding for primary
glomerular disease research. NephCure recommends the subcommittee
encourage NIDDK to continue to issue primary glomerular disease PAs.
Due to the disproportionate burden of FSGS on minority populations,
it is appropriate for NIMHD to develop an interest in this research.
NephCure asks the subcommittee to encourage ORDR, NIDDK and NIMHD to
collaborate on research that studies the incidence and cause of this
disease among minority populations. NephCure also asks the subcommittee
to urge NIDDK and the NIMHD to undertake culturally appropriate efforts
aimed at educating minority populations about primary glomerular
disease.
Thank you again for the opportunity to present the views of the
FSGS/NS community. Please contact the NephCure Foundation if additional
information is required.
______
Prepared Statement of the Neurofibromatosis (NF) Network
Thank you for the opportunity to submit testimony to the
subcommittee on the importance of continued funding at the National
Institutes of Health (NIH) for research on Neurofibromatosis (NF), a
genetic disorder closely linked too many common diseases widespread
among the American population.
We respectfully request that you include the following report
language on NF research at the National Institutes of Health within
your fiscal year 2014 Labor, Health and Human Services, Education
Appropriations bill.
Neurofibromatosis [NF].--The Committee supports efforts to increase
funding and resources for NF research and treatment at multiple NIH
Institutes. Children and adults with NF are at significant risk for the
development of many forms of cancer; the Committee encourages NCI to
increase its NF research portfolio in fundamental basic science,
translational research and clinical trials focused on NF. The Committee
also encourages the NCI to support NF centers, NF clinical trials
consortia, and NF preclinical mouse models consortia. The Committee
urges NHLBI to expand its NF research investment based on the increased
prevalence of hypertension and congenital heart disease in this patient
population. Because NF causes brain and nerve tumors and is associated
with cognitive and behavioral problems, the Committee urges NINDS to
continue to aggressively fund fundamental basic science research on NF
relevant to nerve damage and repair, learning disabilities and
attention deficit disorders. In addition, the Committee encourages the
NICHD and NIMH to expand funding of basic and clinical NF research in
the area of learning and behavioral disabilities. Children with NF1 are
prone to severe bone deformities, including scoliosis; the Committee
therefore encourages NIAMS to expand its NF1 research portfolio. Since
NF2 accounts for approximately 5 percent of genetic forms of deafness,
the Committee encourages NIDCD to expand its investment in NF2 basic
and clinical research. Based on the increased incidence of optic
gliomas, vision loss, cataracts, and retinal abnormalities in NF, the
Committee urges the NEI to expand its NF research portfolio. Finally,
given that NF represents a tractable model system to study the genomics
of cancer predisposition, learning and behavior problems, and bone
abnormalities translatable to individualized medicine, the Committee
encourages NHGRI to increase its investment in NF research.
On behalf of the Neurofibromatosis (NF) Network, a national
organization of NF advocacy groups, I speak on behalf of the 100,000
Americans who suffer from NF as well as approximately 175 million
Americans who suffer from diseases and conditions linked to NF such as
cancer, brain tumors, heart disease, memory loss, and learning
disabilities. Thanks in large measure to this subcommittee's strong
support, scientists have made enormous progress since the discovery of
the NF1 gene in 1990 resulting in clinical trials now being undertaken
at NIH with broad implications for the general population.
NF is a genetic disorder involving the uncontrolled growth of
tumors along the nervous system which can result in terrible
disfigurement, deformity, deafness, blindness, brain tumors, cancer,
and even death. In addition, approximately one-half of children with NF
suffer from learning disabilities. NF is the most common neurological
disorder caused by a single gene and three times more common than
Muscular Dystrophy and Cystic Fibrosis combined. There are three types
of NF: NF1, which is more common, NF2, which primarily involves tumors
causing deafness and balance problems, and schwannomatosis, the
hallmark of which is severe pain. While not all NF patients suffer from
the most severe symptoms, all NF patients and their families live with
the uncertainty of not knowing whether they will be seriously affected
because NF is a highly variable and progressive disease.
Researchers have determined that NF is closely linked to heart
disease, learning disabilities, memory loss, cancer, brain tumors, and
other disorders including deafness, blindness and orthopedic disorders,
primarily because NF regulates important pathways common to these
disorders such as the RAS, cAMP and PAK pathways. Research on NF
therefore stands to benefit millions of Americans:
Pain Management
Severe and unmanageable pain is seen in all forms of NF,
particularly in schwannomatosis, and significantly impacts quality of
life. Over the past 3 years, Schwannomatosis research has made
significant advances and new research suggests that the molecular or
root cause of schwannomatosis pain may be the same as phantom limb
pain. Understanding what causes this pain, and how it might be treated,
has been a fast-moving area of NF research over the past few years, and
CDMRP NFRP funding has been critical in supporting this.
Nerve regeneration
NF often requires surgical removal of nerve tumors, which can lead
to nerve paralysis and loss of function. Understanding the changes that
occur in a nerve after surgery, and how it might be regenerated and
functionally restored, will have significant quality of life value for
affected individuals.
Wound Healing, inflammation and blood vessel growth
Wound healing requires new blood vessel growth and tissue
inflammation. Mast cells are critical mediators of inflammation in
wound healing, and they must be quelled and regulated in order to
facilitate this healing. Mast cells are also important players in NF1
tumor growth. In the past few years, researchers have gained deep
knowledge on how mast cells promote tumor growth, and this research has
led to ongoing clinical trials to block this signaling. The result is
that tumors grow slower. As researchers learn more about blocking mast
cell signals in NF, this research could be translated to the management
of mast cells in wounds and wound healing.
Bone growth and repair/Orthopedic abnormalities and amputation
At least a quarter of children with NF1 have abnormal bone growth
in any part of the skeleton. In the legs, the long bones are weak,
prone to fracture and unable to heal properly; this can require
amputation at a young age. Adults with NF1 also have low bone mineral
density, placing them at risk of skeletal weakness and injury. NF1 bone
defects research has been a fast-moving field in recent years and CDMRP
NFRP has funded a number of important studies in this area.
Brain Function/Learning Disabilities
Learning disabilities affect two-thirds of person with NF1, ranging
from mild to severe, and including attention and social behavior
deficits. Learning disabilities impact the quality of life for those
with NF1 more than tumors or any other clinical feature. In recent
years, research has revealed common threads between NF1 learning
disabilities, autism and other related disabilities.
The enormous promise of NF research, and its potential to benefit
over 175 million Americans who suffer from diseases and conditions
linked to NF, has gained increased recognition from Congress and the
NIH. The enormous promise of NF research, and its potential to benefit
over 175 million Americans who suffer from diseases and conditions
linked to NF, has gained increased recognition from Congress and the
NIH. This is evidenced by the fact that eleven institutes are currently
supporting NF research, and NIH's total NF research portfolio has
increased from $3 million in fiscal year 1990 to an estimated $24
million in fiscal year 2012. Given the potential offered by NF research
for progress against a range of diseases, we are hopeful that the NIH
will continue to build on the successes of this program by funding this
promising research and thereby continuing the enormous return on the
taxpayers' investment.
We appreciate the subcommittee's strong support for NF research and
will continue to work with you to ensure that opportunities for major
advances in NF research are aggressively pursued. Thank you.
______
Prepared Statement of the Nursing Community
The undersigned organizations representing the Nursing Community, a
forum comprised of 58 national professional nursing associations,
respectfully submit this testimony to the Senate Appropriations
Subcommittee on Labor, Health and Human Services, Education, and
Related Agencies. The Nursing Community works collaboratively to build
consensus and advocate on a wide spectrum of healthcare and nursing
issues surrounding practice, education, and research. Our organizations
are committed to promoting America's health through the advancement of
the nursing profession. Collectively, the Nursing Community represents
nearly one million registered nurses (RNs), advanced practice
registered nurses (APRNs-including certified nurse-midwives, nurse
practitioners, clinical nurse specialists, and certified registered
nurse anesthetists), nurse executives, nursing students, nursing
faculty, and nurse researchers.
For fiscal year 2014, the Nursing Community respectfully requests
$251 million for the Health Resources and Services Administration's
(HRSA) Nursing Workforce Development programs (authorized under Title
VIII of the Public Health Service Act [42 U.S.C. 296 et seq.]), $150
million for the National Institute of Nursing Research (NINR, one of
the 27 centers and institutes of the National Institutes of Health),
and $20 million in authorized funding for the Nurse-Managed Health
Clinics (NMHCs, Title III of the Public Health Service Act). These
investments are critical to ensuring that high-quality nursing services
are delivered nationwide.
The Demand for Nursing Continues to Outgrow Supply
The U.S. Bureau of Labor Statistics (BLS) projects that the total
number of additional nurses will rise dramatically. In its report
Employment Projections: 2010-2020, the BLS reveals that the expected
number of practicing nurses will grow from 2.74 million in 2010 to 3.45
million in 2020, an increase of 712,000 or 26 percent. The projections
further explain the need for 495,500 replacements in the nursing
workforce, bringing the total number of job openings for nurses due to
growth and replacements to 1.2 million by 2020.
Two primary factors contribute to this overwhelming projection.
First, America's nursing workforce is aging. According to the 2013 HRSA
report The U.S. Nursing Workforce: Trends in Supply and Demand, of the
2.8 million RNs currently practicing in our Nation, 34.9 percent are
over the age of 50, and 8.5 percent are over the age of 60. As the
economy continues to rebound, many of these nurses will seek
retirement, leaving behind a significant deficit in the number of
experienced nurses in the workforce. Secondly, America's Baby Boomer
population is aging. It is estimated that over 80 million Baby Boomers
reached age 65 last year. This population will require a vast influx of
nursing services, particularly in areas of primary care and chronic
illness management.
Concurrently, tens of thousands of qualified applicantions are
turned away from nursing school each year. According to the American
Association of Colleges of Nursing's 2012-2013 survey on enrollment and
graduations, 79,659 qualified applications were turned away from entry-
level baccalaureate and graduate nursing programs in 2012 alone.
Nursing schools report that faculty vacancies, alongside a lack of
funding and clinical training sites, are a primary reason that prevents
schools from maximizing student enrollment. Moreover, a special survey
on nursing faculty vacancy conducted by AACN for the 2012-2013 academic
year reveals an average vacancy rate of 7.6 percent for full-time
positions and 6.8 percent for part-time positions within baccalaureate
and graduate nursing programs across the country.
A significant investment must be made in the education of new
nurses to provide the Nation with the nursing services it demands.
How Title VIII Nursing Workforce Development Programs Support the
Supply of Nurses
For nearly five decades, the Nursing Workforce Development programs
have helped build the supply and distribution of qualified nurses to
meet our Nation's healthcare demands. The Title VIII programs support
nursing education at all levels, and are designed to address specific
needs of patient populations as well as those within the nursing
workforce.
These programs are vital to expediting the number of nurses
entering into the workforce pipeline. AACN's 2012-2013 Title VIII
Student Recipient Survey, which gathers information about Title VIII
dollars and their impact on nursing students, demonstrates that Title
VIII programs played a critical role in persuading students to enroll
in nursing school. This survey, which included responses from over
1,100 students, reveals that 74 percent of the respondents receiving
Title VIII funding are currently attending school full-time. By
supporting full-time students, these programs help to ensure that
students enter the workforce without delay.
Lastly, Title VIII programs help increase access to care in areas
experiencing shortages in the number of health professionals and health
services. The Title VIII Student Recipient Survey reveals that nearly
21 percent of student respondents intend to practice in a community
hospital, and 22.7 percent of respondents plan to practice in public
health or in a rural or underserved area upon graduation. Furthermore,
many of these students also report that due to Title VIII assistance,
they are able to pursue a career in geographic areas where salary is
not as competitive, but where the demand for nursing services is great.
The Nursing Community respectfully requests $251 million for the
Nursing Workforce Development programs authorized under Title VIII of
the Public Health Service Act in fiscal year 2014.--The Nursing
Community recognizes that Congress is faced with difficult decisions
surrounding Federal deficit reduction, however we believe this amount
is critical in ensuring the nursing workforce can meet the national
demand for nursing services.
Advancing Nursing Science through the National Institute of Nursing
Research
Research conducted at the NINR contributes to the advancement of
nursing science that is translated into evidence-based practice.
Initiatives funded through NINR center around increasing health
promotion, reducing rates of chronic illness and transmissible disease,
and improving patient quality of life. More specifically, NINR
investigates unique ways to integrate the patient experience into
health practices that empower patients and their families toward these
goals. This includes efforts to improve symptom management related to
chronic disease, reduce suffering at the end of life, and understand
how genomics impact disease processes for specific populations. While
other healthcare research focuses on curing disease, a large portion of
NINR' s work is aimed at preventing disease. This work is fundamental
to our healthcare system's endeavor of providing high-quality care in a
cost-effective manner by mitigating burdensome costs associated with
treatment.
Moreover, NINR helps to provide needed faculty to support the
education of future generations of nurses. Training programs at NINR
develop future nurse-researchers, many of whom also serve as faculty in
our Nation's nursing schools.
--The Nursing Community respectfully requests $150 million for the
NINR in fiscal year 2014.
Nurse-Managed Health Clinics: Expanding Access to Care
Run by an APRN and staffed by an interdisciplinary team, NMHCs
provide essential primary care services in communities across the
country. These clinics are often associated with a school, college,
university, department of nursing, federally qualified health center,
or independent nonprofit healthcare agency. NMHCs can be found in
medically underserved regions of the country, including rural
communities, Native American reservations, senior citizen centers,
elementary schools, and urban housing developments. Nurses and other
health professionals who work in NMHCs serve as educators to patients
and their families by teaching healthy lifestyle practices and
promoting disease prevention. By providing early assessment and
intervention for patients who are often most vulnerable to co-
morbidities, NMHCs help manage medical conditions that have the
potential to transpire into acute events. As a result, NMHCs help
patients out of the emergency room, thereby improving patient outcomes
and saving the healthcare system millions of dollars annually.
Furthermore, NMHCs serve as clinical education training sites for
nursing students and other health professionals--a crucial aspect of
NMHCs given that a lack of training sites is commonly identified as a
barrier to nursing school enrollment. An increasing emphasis on
interdisciplinary care delivery necessitates that health professionals
begin their training in an environment conducive to collaborative work.
Many NMHCs serve as clinical training sites for nurses, physicians,
social workers, public health nurses, and therapists to foster patient-
centered care early on in their practice.
--The Nursing Community respectfully requests $20 million for the
Nurse-Managed Health Clinics authorized under Title III of the
Public Health Service Act in fiscal year 2014.
Without a workforce of well-educated nurses providing evidence-
based care to those who need it most, including our growing aging
population, the healthcare system is not sustainable. The Nursing
Community's request of $251 million for the Title VIII Nursing
Workforce Development programs, $150 million for the National Institute
of Nursing Research, and $20 million for Nurse-Managed Health Clinics
in fiscal year 2014 will help ensure access to quality care provided by
America's nursing workforce.
MEMBERS OF THE NURSING COMMUNITY SUBMITTING THIS TESTIMONY
Academy of Medical-Surgical Nurses
American Academy of Ambulatory Care Nursing
American Academy of Nursing
American Association of Colleges of Nursing
American Association of Nurse Anesthetists
American Association of Nurse Practitioners
American College of Nurse-Midwives
American Nephrology Nurses' Association
American Nurses Association
American Organization of Nurse Executives
American Pediatric Surgical Nurses Association
American Society for Pain Management Nursing
American Society of PeriAnesthesia Nurses
Association of Community Health Nursing Educators
Association of Nurses in AIDS Care
Association of periOperative Registered Nurses
Association of Public Health Nurses
Association of Rehabilitation Nurses
Commissioned Officers Association of the U.S. Public Health Service
Dermatology Nurses' Association
Gerontological Advanced Practice Nurses Association
Hospice and Palliative Nurses Association
Infusion Nurses Society
International Association of Forensic Nurses
International Society of Psychiatric Nursing
National Association of Clinical Nurse Specialists
National Association of Neonatal Nurse Practitioners
National Association of Neonatal Nurses
National Association of Nurse Practitioners in Women's Health
National Association of Pediatric Nurse Practitioners
National Black Nurses Association
National Nursing Centers Consortium
National Organization for Associate Degree Nursing
National Organization of Nurse Practitioner Faculties
Oncology Nursing Society
Pediatric Endocrinology Nursing Society
Preventive Cardiovascular Nurses Association
Public Health Nursing Section, American Public Health Association
Society of Urologic Nurses and Associates
The Quad Council of Public Health Nursing Organizations
Wound, Ostomy and Continence Nurses Society
______
Prepared Statement of the Nurse Practitioner Roundtable
Chairman Harkin, Ranking Member Moran, and members of the
subcommittee: The Nurse Practitioner Roundtable is comprised of the
five nurse practitioner associations representing the interests and
concerns of the more than 155,000 nurse practitioners (NPs) across the
country. Our organizations advocate for the active role of NPs as
providers of high quality, cost-effective, comprehensive, patient-
centered healthcare and their patients. NPs have been furnishing
primary, acute and specialty healthcare to patients of all ages and
walks of life for nearly half a century. They assess the health care
needs of patients; order, perform, supervise, and interpret diagnostic
tests; make diagnoses; and initiate and manage treatment plans
including prescribing medications. They are the healthcare providers of
choice for millions of patients. More than 80 percent of NPs are
educationally prepared as family, adult, gerontologic, pediatric, and
women's health primary care providers.
NPs work with organizations representing the rest of the advanced
practice registered nurse (APRN) and general nursing community to
support a strong Federal investment in the Nursing Workforce
Development programs, to secure authorized funding for Nurse-Managed
Health Clinics, and fund research initiatives at the National Institute
of Nursing Research (NINR) to ensure that a sufficient supply of the
highest-quality nursing services is available to meet the Nation's
increasing need for effective and efficient healthcare.
The Growing Demand for Nurse Practitioners
As millions of Americans enroll in expanded health insurance
coverage in 2014, our Nation will face a dramatically increased demand
for health care providers at a time when many professions face
shortages and increasing retirements. Policy makers recognize that NPs
are essential to meeting the demand for primary care services for
women, children, the uninsured and patients with special needs, yet we
face a provider shortage that is projected to continue. A significant
and sustained investment in the education of NPs is needed to produce
the workforce required to meet our population's demands for health care
services.
Nursing education programs are under increased pressure as Congress
wrestles with reducing the Federal deficit. The six-month continuing
resolution (H.J. Res. 117) enacted last September extended funding for
Title VIII nurse education programs at fiscal year 2012 levels, a
reduction of more than 4 percent from 2011. These programs now face the
uncertain impact of sequestration, which could eliminate 645 training
opportunities for advanced practice registered nurses. Funding for
Advanced Education Nursing in fiscal year 2012 totaled only $64
million. This is the only Federal funding source for Nurse Practitioner
education programs.
Title VIII Nursing Workforce Development Programs
The Nursing Workforce Development programs authorized under Title
VIII of the Public Health Service Act have provided the resources to
help educate and prepare nurse practitioners and other qualified nurses
to meet our Nation's healthcare needs for nearly half a century. Title
VIII programs reinforce nursing education from entry-level preparation
through graduate study, and support the institutions that prepare NPs
and other nurses to practice in rural and medically underserved
communities. These are the only Federal programs focused on filling the
gaps in the workforce of health professionals unmet by traditional
market forces and on producing a workforce capable of caring for the
Nation's increasingly diverse population.
Title VIII programs also address the serious need for more nursing
and Nurse Practitioner faculty. Nursing schools were forced to turn
away nearly 80,000 qualified applications from entry-level
baccalaureate and graduate nursing programs in 2012, according to an
AACN 2012-2013 enrollment and graduation survey, with faculty vacancies
being a primary reason. The Title VIII Nurse Faculty Loan Program aids
in increasing nursing school enrollment capacity by supporting students
pursuing graduate education in exchange for their service as faculty
for 4 years after graduation. The NP Roundtable urges you to provide
$251 million for the Nursing Workforce Development programs authorized
under Title VIII of the Public Health Service Act in fiscal year 2014.
Nurse-Managed Health Clinics
Nurse-Managed Health Clinics (NMHCs) are health care delivery sites
managed by Nurse Practitioners and other APRNs, staffed by an
interdisciplinary team of healthcare providers that may include
physicians, social workers, public health nurses, and therapists. These
clinics are often associated with a school, college, university, or
department of nursing, and occasionally with community health centers
or independent nonprofit healthcare agencies.
NMHCs are particularly important threads in the Nation's healthcare
safety net, caring for patients in medically underserved areas
including rural communities, Native American reservations, senior
citizen centers, elementary schools, and urban housing developments.
Treating populations that are among the most vulnerable to chronic
illnesses, NMHCs are committed to the management and reduction of acute
and chronic disease and creating healthier communities by providing
primary care and other services, as well as counseling and educating
patients and the community regarding health promotion and disease
prevention. These clinics also serve as important clinical education
training sites for NPs, other nursing students and health
professionals. This is particularly important given the lack of
clinical training sites that has been recognized as one of the barriers
to nursing school enrollment. The NP Roundtable requests that you
provide $20 million for the Nurse-Managed Health Clinics authorized
under Title III of the Public Health Service Act in fiscal year 2014.
The National Institute of Nursing Research
As one of the 27 Institutes and Centers at the National Institutes
of Health (NIH), the National Institute of Nursing Research (NINR)
funds research that provides the evidence-based foundation for nursing
practice. Nurse-scientists at NINR examine ways to innovate and improve
care models to deliver safe, high quality health services in more cost-
effective ways. NINR engages in research on improving the management of
care for patients during illness and recovery, reducing the risks of
disease and disability, promoting healthy lifestyles, enhancing the
quality of life for those with chronic disease, and compassionately
caring for individuals at the end of life. In addition, NINR provides
critically needed faculty to support the education of the next
generations of nurses and Nurse Practitioners; its training programs
develop the nurse-researchers of the future, many of whom go on to
serve as faculty in our Nation's nursing schools. The NP Roundtable
encourages you to provide $150 million for the NINR in fiscal year
2014.
Nurse Practitioners recognize that controlling the growth of
Federal spending is a national priority, but they also know it is
critical for Congress to provide sustained stable funding to maintain
nurse practitioner education programs. Without a workforce of well-
educated and clinically prepared NPs providing evidence-based care to
those in need, our healthcare system will not be sustainable. The NP
Roundtable respectfully urges you to provide for that workforce by
committing $251 million for the Title VIII Nursing Workforce
Development programs, $20 million for Nurse-Managed Health Clinics, and
$150 million for the National Institute of Nursing Research in fiscal
year 2014.
American Association of Nurse Practitioners
Gerontological Advanced Practice Nurses Association
National Association of Nurse Practitioners in Women's Health
National Association of Pediatric Nurse Practitioners
National Organization of Nurse Practitioner Faculties
______
Prepared Statement of the Ovarian Cancer National Alliance
The Ovarian Cancer National Alliance (the Alliance) appreciates the
opportunity to submit comments for the record regarding the Alliance's
fiscal year 2014 funding recommendations. We believe these
recommendations are critical to ensure advances to help reduce and
prevent suffering from ovarian cancer.
For 16 years, the Alliance has worked to increase awareness of
ovarian cancer and advocate for additional Federal resources to support
research that would lead to more effective diagnostics and treatments.
As an umbrella organization with more than 60 national, State and local
organizations, the Alliance unites the efforts of survivors, grassroots
activists, women's health advocates and health care professionals to
bring national attention to ovarian cancer. The Ovarian Cancer National
Alliance is the foremost advocate for women with ovarian cancer in the
United States. To advance the interests of women with ovarian cancer,
the organization advocates at a national level for increases in
research funding for the development of an early detection test,
improved health care practices and life-saving treatment protocols. The
Ovarian Cancer National Alliance educates health care professionals and
raises public awareness of the risks, signs and symptoms of ovarian
cancer.
Approximately 22,000 women are diagnosed with ovarian cancer every
year, and more than 14,000 women die from the disease. Ovarian cancer
is the deadliest gynecologic cancer; fewer than half of women survive 5
years from diagnosis and only one-third survive 10 years. At this
point, there is no reliable test we can use to screen women or catch
the disease early. There are some known risk factors, including a
genetic risk of breast/ovarian cancer, hormone replacement therapy and
aging. Factors that decrease the risk of developing ovarian cancer
include use of oral contraceptives, breastfeeding and removal of the
fallopian tubes/ovaries. The majority of women with the disease have at
least one recurrence, and for many of them, treatment eventually stops
working. Ovarian cancer is the fifth leading cause of cancer deaths
among women in the United States. That is why research and public
health programs are so important for ovarian cancer.
The National Cancer Institute and the Centers for Disease Control
and Prevention both do significant and valuable work around ovarian
cancer. We are grateful for the Committee's continued support of these
agencies, and the programs they undertake to lower the burden of
ovarian cancer.
The NCI is the single largest nonprofit funder of ovarian cancer
research domestically, funding approximately 75 percent of all
nonprofit ovarian cancer research done in the United States. In fiscal
year 2011, the NCI spent approximately $110 million on ovarian cancer
research, including large grants to cancer centers and cooperative
groups as well smaller grants for research on topics including
overcoming drug resistance, angiogenesis--cutting off blood supply to
tumors, and exploring the link between high density breasts and risk
for ovarian cancer.
Recent highlights of NCI funded research include: a large trial of
a new ovarian cancer drug, Avastin, which was shown to improve the time
women's cancer stayed in remission; studies showing that prophylactic
surgery for high risk women, including the removal of just a woman's
fallopian tubes, significantly reduces the odds of developing ovarian
cancer; and a study showing that screening average risk women with our
current tools does not reduce mortality. The results of The Cancer
Genome Atlas--another study funded by NCI--showed us how important
personalized medicine is for ovarian cancer. The Atlas told us that
each case of ovarian cancer is genetically unique, so we are going to
have our work cut out for us to identify targets and develop and test
drugs.
The CDC has two programs directly related to ovarian cancer. The
first raises awareness of the risks and symptoms of gynecologic cancers
through advertising and educational materials. As of December 2012,
PSAs about gynecologic cancer had generated 2.62 billion audience
impressions and paid media generated 187 million audience impressions.
Studies conducted by the CDC have shown that both women and health
providers are unaware of the symptoms of ovarian cancer and current
recommendations against screening. This data shows the clear need for
continued education.
The second CDC program is focused on epidemiological research.
Current research includes an evidence review of birth control as an
intervention for those at high risk of developing ovarian cancer, a
study of barriers to determine why women don't see specialists for
surgery, as well as analyses of data on disparities and other patterns
of survival.
While we clearly have a long way to go, we have made progress in
our understanding of ovarian cancer. We have seen new treatments
developed over the past twenty years, and we have a better
understanding of where ovarian cancer develops and who is at risk for
this deadly disease. In addition, we have a larger and stronger network
of survivors and family members who can support one another.
The Alliance maintains a long-standing commitment to work with
Congress, the Administration and other policy makers and stakeholders
to improve the survival rate for women with ovarian cancer through
education, public policy, research and communication. Please know we
appreciate and understand that our Nation faces many challenges,
including limited resources. We thank you for continuing to support
programs that help women and health providers better understand and
treat ovarian cancer. We know these programs have reduced suffering. We
know women whose lives have been saved by knowing they were at high
risk or who got new treatments that kept their cancer at bay. We
respectfully request that you maintain support for these critical
activities.
ONE VOICE AGAINST CANCER FISCAL YEAR 2014 APPROPRIATIONS REQUESTS
------------------------------------------------------------------------
Amount
Program (millions)
------------------------------------------------------------------------
National Institutes of Health.............................. 32,632
National Cancer Institute.............................. 5,349
National Institute on Minority Health and Health 283
Disparities...........................................
Centers for Disease Control and Prevention................. 515
Comprehensive Cancer Control Initiative................ 50
Cancer Registries...................................... 65
National Breast & Cervical Cancer Early Detection 275
Program...............................................
Colorectal Cancer...................................... 70
Skin Cancer............................................ 5
Prostate Cancer........................................ 25
Ovarian Cancer......................................... 10
Geraldine Ferraro Blood Cancer Program................. 4.67
Johanna's Law: The Gynecologic Cancer Education and 10
Awareness Act.........................................
Office of Smoking and Health........................... 197
------------------------------------------------------------------------
ONE VOICE AGAINST CANCER MEMBERS
Alliance for Prostate Cancer Prevention
American Academy of Dermatology Association
American Association for Cancer Research
American Cancer Society Cancer Action Network
American College of Surgeons Commission on Cancer
American Congress of Obstetricians and Gynecologists
American Social Health Association
American Society of Clinical Oncology
American Society for Radiation Oncology
Asian & Pacific Islander American Health Forum
Association of American Cancer Institutes
Bladder Cancer Advocacy Network
Cancer Support Community
Charlene Miers Foundation for Cancer Research
Colon Cancer Alliance
CureSearch for Children's Cancer
Fight Colorectal Cancer
Friends of Cancer Research
Intercultural Cancer Council Caucus
International Myeloma Foundation
LIVESTRONG
Leukemia & Lymphoma Society
Malecare Prostate Cancer Support
Men's Health Network
National Alliance of State Prostate Cancer Coalitions
National Association of Chronic Disease Directors
National Brain Tumor Society
National Cervical Cancer Coalition
National Coalition for Cancer Research (NCCR)
National Coalition for Cancer Survivorship
National Patient Advocate Foundation
Oncology Nursing Society
Ovarian Cancer National Alliance
Pancreatic Cancer Action Network
Pennsylvania Prostate Cancer Coalition
Prevent Cancer Foundation
Preventing Colorectal Cancer
Sarcoma Foundation of America
Society of Gynecologic Oncology
Susan G. Komen for the Cure Advocacy Alliance
Us TOO International Prostate Cancer Education and Support Network
______
Prepared Statement of the Parkinson's Action Network
Dear Chairman Harkin and Ranking Member Moran: The Parkinson's
Action Network (PAN) appreciates the opportunity to comment on the
fiscal year 2014 appropriations for the U.S. Department of Health and
Human Services. Our comments will focus on the importance of Federal
investment in biomedical research at the National Institutes of Health
(NIH) and the Brain Research through Advancing Innovative
Neurotechnologies (BRAIN) Initiative. PAN supports at least $32 billion
in funding for the NIH and the President's budget request of
approximately $100 million for the BRAIN Initiative in fiscal year
2014, $40 million of which will come from the NIH.
PAN is the unified voice of the Parkinson's community advocating
for better treatments and a cure. In partnership with other Parkinson's
organizations and our powerful grassroots network, we educate the
public and Government leaders on better policies for research and
improved quality of life for the estimated 500,000 to 1.5 million
Americans living with Parkinson's, for whom there is no treatment
available that slows, reverses, or prevents progression.
As the second most common neurological condition after Alzheimer's
disease, Parkinson's disease is projected to grow substantially over
the next few decades as the size of the elderly population grows and
will have a direct impact on the health care system and economy. A
recent study published in Movement Disorders estimated that the
economic burden of Parkinson's disease is at least $14.4 billion a year
in the United States, and the prevalence of Parkinson's will more than
double by the year 2040.\1\ In addition, the study calculated an
additional $6.3 billion in indirect costs such as missed work or loss
of a job for the patient or family member who is helping with care,
long-distance travel to see a neurologist or movement disorder
specialist, as well as costs for home modifications, adult day care,
and personal care aides. A second study also published in Movement
Disorders projected that if Parkinson's progression were slowed by 50
percent, there would be a 35 percent reduction in excess costs,
representing a dramatic reduction in cost of care spread over a longer
expected survival.\2\ Both studies highlight the enormous economic
implications of this devastating disease, and make it abundantly clear
that increased research funding is a wise investment on the front end
to help significantly lower or eliminate costs on the back end.
Sustained growth for the NIH should be an urgent national priority.
The NIH supports research grants in all fifty States designed to
identify and develop medical discoveries that improve people's health,
understand disease, and save lives. More than 80 percent of its
research dollars go to universities, research institutions, and small
businesses, which directly create thousands of jobs and grow local
economies across the country. In 2012, NIH funding supported more than
402,000 jobs and generated more than $57.8 billion in economic
activity. NIH remains the largest funder of Parkinson's research,
supporting more than $154 million in funding for Parkinson's disease in
fiscal year 2012.
Under sequestration, instead of increasing research budgets to
tackle the diseases of the future, NIH has been cut by more than $1.5
billion. While funding cuts may not be felt immediately or all at once,
they will delay years of critical research on a cure for Parkinson's
and other diseases. For instance, the National Institute of
Neurological Disorders and Stroke (NINDS), which is the primary
supporter of the Parkinson's research portfolio at NIH, will be unable
to expand the NINDS Parkinson's Disease Biomarkers Program, which
brings together multiple stakeholders dedicated to finding diagnostic
and progression biomarkers for Parkinson's disease, as planned. A
Parkinson's biomarker could hasten new treatments and improve diagnosis
of the disease in the future.
By investing in biomedical research both at the Federal level and
in the private sector, and creating results-driven public-private
partnerships, the scientific community can develop more innovative
treatments and, one day, a cure for Parkinson's. That is why PAN is
supportive of the new BRAIN Initiative, which aims to revolutionize our
understanding of the human brain by bringing together the NIH, the
Defense Advanced Research Projects Agency, and the National Science
Foundation as well as key private sector partners, like the Allen
Institute for Brain Research. We are supportive of the President's
request for approximately $100 million of fiscal year 2014 funds to
jumpstart this exciting new effort, with $40 million coming from the
NIH. We are hopeful that this cross-cutting and targeted effort can
answer questions and create tools that will be directly applicable to
the millions of people living with neurological diseases.
PAN urges the subcommittee to prioritize biomedical research
funding by supporting at least $32 billion for the NIH overall and
supporting the President's request of $40 million at the NIH for the
BRAIN Initiative. We look forward to working with the subcommittee as
the fiscal year 2014 appropriations process moves forward.
---------------------------------------------------------------------------
\1\ ``The Current and Projected Economic Burden of Parkinson's
Disease in the United States,'' Movement Disorders, Vol. 000, No. 000,
2013.
\2\ ``An Economic Model of Parkinson's Disease: Implications for
Slowing Progression in the United States,'' Movement Disorders, Vol.
00, No. 00, 2012.
---------------------------------------------------------------------------
______
Prepared Statement of the Physician Assistant Education Association
(PAEA)
On behalf of the 174 accredited physician assistant (PA) education
programs in the United States, the Physician Assistant Education
Association (PAEA) is pleased to submit these comments on the fiscal
year 2014 appropriations for PA education programs that are authorized
through Title VII of the Public Health Service Act. PAEA supports
funding of at least $264.4 million in fiscal year 2014 for the health
professions education programs authorized under Title VII of the Public
Health Service Act and administered through the Health Resources and
Services Administration (HRSA) and requests $7.65 million in support of
PA programs operating across the country This is the only designated
source of Federal funding for PA education and is crucial to the
education system's ability to meet the demand for training and to
continue to produce highly skilled physician assistants ready to enter
the health care workforce in an average of 26 months.
Need for Increased Federal Funding
The unmet need for primary care services in the United States is
well documented, and only expected to grow as Baby Boomers age and the
Affordable Care Act is fully implemented. The very parameters of access
and health care quality are rapidly evolving. Yet the one constant in
our health care system remains the need for qualified health care
providers in numbers sufficient to meet demand, and primary care has
been clearly identified as the critical entry point into the health
care system where that access must be guaranteed. PAs stand ready for
the challenges in primary care, and could play an even larger role with
appropriate financial support and through innovations in the PA
education system.
Like physicians, the PA profession also faces shortages that will
hinder its ability to help address the primary care issue in the United
States. Without new solutions, at the current output of approximately
6500 graduates from PA programs per year, these shortages will persist,
particularly in the rural and underserved communities where care is
needed the most. Title VII funding is the only opportunity for PA
programs to apply for Federal funding and plays a crucial role in
developing and supporting the PA education system's ability to produce
the next generation of these critical advanced practice clinicians.
Background on the Profession
Since the 1960s, PAs have consistently demonstrated they are
effective partners in health care, readily adaptable to the needs of an
ever-changing delivery system. Physician assistants are licensed health
professionals with advanced education in general medicine. PAs practice
medicine as members of a team working with supervising physician. They
exercise autonomy in medical decisionmaking and provide a broad range
of medical and therapeutic services to diverse populations in rural and
urban settings. In all 50 States, PAs carry out physician-delegated
duties that are allowed by law and within the physician's scope of
practice and the PA's training and experience, including prescriptive
authority in all 50 States, the District of Columbia, and Guam. The
combination of medical training, advanced education and hands-on
experience allows PAs to practice with significant autonomy, and in
rural and other medically underserved areas where they are often the
only full-time medical provider. The profession is well established,
yet young enough to embrace new models of care, adopt innovative
approaches to training and education, and adapt to health system
challenges as they arise. The PA practice model is, by design, a team-
based approach to patient-centered care where the PA works in tandem
with a physician and other health professionals. This PA practice
approach to quality care is uniquely aligned with the patient-centered,
collaborative, interprofessional and outcomes-based care models
expected to transform the U.S. health care system.
PA Education: The Pipeline for Physician Assistants
There are currently 174 accredited PA education programs in the
United States--a 23 percent increase over the past 5 years; together
these programs graduate nearly 6,422 PA students each year. PAs are
educated as generalists in medicine and their flexibility allows them
to practice in more than 60 medical and surgical specialties. More than
one third of PA program graduates practice in primary care.
The average PA education program is 26 months in length and
typically, 1 year is devoted to classroom study and approximately 12
months is devoted to clinical rotations. Most curricula include 340
hours of basic sciences and nearly 2,000 hours of clinical medicine.
As of today, approximately 65 new PA programs are in the pipeline
at various stages of development, moving toward accredited status. The
growth rate in the applicant pool is even more remarkable. Since its
inception in 2001 until the most recent application cycle, the
Centralized Application Service (CASPA) used by most programs grew from
4,669 applicants to over 19,000. In March 2009, there were a total of
12,216 applicants to PA education programs; as of March 2013, there
were 18,900 applicants to PA education programs. This represents a 54
percent increase in CASPA applicants over the past 5 years.
The PA profession is expected to continue to grow as a result of
the projected shortage of physicians and other health care
professionals, the growing demand for care driven by an aging
population, and the continuing strong PA applicant pool. The Bureau of
Labor Statistics projects a 39 percent increase in the number of PA
jobs between 2008 and 2018. The way that PAs are trained in America--
the caliber of our institutions and the expertise of our educators--is
the gold-standard throughout the world and that must be maintained.
With its relatively short initial training time and the flexibility of
generalist-trained PAs, the PA profession is well-positioned to help
fill projected shortages in the numbers of health care professionals--
if appropriate resources are available to support the education system
behind them.
AREAS OF ACUTE NEED
Faculty Shortages
Faculty development is one of the profession's critical needs and
educators are an often overlooked element to developing an adequate
primary care workforce. Nearly half of PA program faculty are 50 years
or older and the PA teaching profession faces large numbers of
retirements in the next 10-15 years. An interest in education must be
developed early in the educational process to ensure a continuous
stream of educators and we must alleviate the significant loan burdens
that prevent many physician assistants from entering academia. In order
to attract the most highly qualified individuals to teaching, PA
education programs must have the resources to start that process, and
train faculty in academic skills, such as curriculum development,
teaching methods, and laboratory instruction. Most educators come from
clinical practice and these non-clinical professional skills are
essential to a successful transition from clinical practice to a
classroom setting. Without Federal support, we will continue to cycle
through existing faculty and face an impending shortage of teachers who
are prepared for and committed to the critical teaching role in PA
student education.
Clinical Site Shortages
Outside of the classroom, the PA education faces additional
challenges in meeting demand. A lack of clinical sites for PA education
is hampering PA programs' ability to produce the next generation of PAs
at the pace needed to meet the demand for primary care in the U.S. This
shortage is caused by two main factors: a shortage of medical
professionals willing to teach students as they are cycling through
their clinical rotations (preceptors), and a lack of sites with the
physical space to teach.
This phenomenon is experienced throughout the health professions,
and is particularly acute in primary care. It has created unintentional
competition for clinical sites and preceptors within and among PAs,
physicians and advance practice nurses. Federal funding can help
incentivize practicing clinicians to both offer their time as
preceptors, and volunteer their clinical operations as training grounds
for PAs and other health professionals to directly interact with
patients. PAEA believes that interprofessional clinical training and
practice are necessary for optimum patient care and will be a defining
model of health care in the U.S. in the 21st century. We can only make
that a reality if we begin to build a sufficient network of health
professionals who are willing to teach the next generation of primary
care professionals--that approach will benefit PAs as well as the
future physicians and nurses that comprise the full primary care team.
Enhancing Diversity
Generalist training, workforce diversity, and practice in
underserved areas are key priorities identified by HRSA and are
consistent with those of PAEA. It is increasingly important for patient
care quality that the health workforce better represents America's
changing demographics, as well as addresses the issues of disparities
in health care. PA programs have been committed to attracting students
from underrepresented minority groups and disadvantaged backgrounds
into the profession, through programs such as the National Health
Service Corps (NHSC), Scholarships for Disadvantaged Students (SDS) and
the Health Careers Opportunity Program (HSCOP). Studies have found that
health professionals from underserved areas are three to five times
more likely to return to underserved areas to provide care and PA
programs are looking for unique ways to recruit diverse individuals
into the profession, and sustain them as leaders in the education
field. If we can provide resources to schools that are particularly
poised to improve their diversity recruitment efforts and replicate or
create best practices, we can begin to address this systemic need.
Efforts to increase workforce diversity in the PA profession are
enhanced when colleges and universities are able to leverage primary
care training funds with other Federal programs that specifically
target recruitment and retention of underrepresented minorities. PAEA
therefore supports the restoration of funding for the Health Careers
Opportunity Program (HCOP), and increased funding for the Scholarships
for Disadvantaged Students and National Health Service Corps.
Historically, access to higher education has been constrained for
individuals from disadvantaged backgrounds. Funding for HCOP that
targets the physician assistant profession and scholarship programs
that provide support for students with limited financial resources
helps to provide a clear path for students who might not otherwise
consider a physician assistant career.
Veterans
The first physician assistant class of 1965 was comprised of Navy
corpsman who served during the Vietnam War. Veterans with medical
backgrounds are excellent potential candidates for PA programs and
special incentives for both the schools and students can help expedite
the process of matriculation into the educational system. Over the past
18 months, PAEA has been involved in initiatives to create a pathway
for veterans interested in becoming physician assistants. PAEA is
currently partnering with the American Academy of Physician Assistants,
the National Commission on Certification of Physician Assistants, and
the Accreditation Review Commission on Education for the Physician
Assistant (ARC-PA ) to promote the opportunities for veterans that
exist in the PA profession. PAEA has also created two groups tasked
with identifying best practices in PA education and ways to quantify
military experiences for academic credit.
The Recruitment and Training group is working to develop and employ
outreach methods to engage military personnel and veterans who are
seeking careers in health care. The Vet 2 PA workgroup was formed with
the goal of identifying PA programs with bridge programs instituted to
help military service members more easily transition into PA training
programs. In addition, there was a special priority created in the last
PA Primary Care Training Grant competition for programs that provided
supportive services for veterans, including academic support and
mentoring services, among others. Eleven out of the 12 PA education
program grantees, all members of PAEA, had a veteran-specific
initiative in their training grant application.
Title VII Funding
Title VII funding fills a critical need for curriculum development,
faculty development, clinical site expansion and diversification of the
primary care workforce. These funds enhance clinical training and
education, assist PA programs with recruiting applicants from minority
and disadvantaged backgrounds, and enables innovative programs that
focus on educating a culturally competent workforce. Title VII funding
increases the likelihood that PA students will practice in medically
underserved communities with health professional shortages. The absence
of this funding would result in the loss of care to patients with the
most urgent need for access to care.
Title VII support for PA programs was strengthened in 2010 when
Congress enacted a 15 percent allocation in the appropriations process
specifically for PA programs working to address the health provider
shortage. This funding will enhance capabilities to train a growing PA
workforce and is likely to increase the pool for faculty positions as a
result of PA programs now being eligible for faculty loan repayment.
Here we provide several examples of how PA programs have used Title
VII funds to creatively expand care to underserved areas and
populations, as well as to develop a diverse PA workforce.
--One Texas program has used its PA training grant to support the
program at a distant site in an underserved area. This grant
provides assistance to the program for recruiting, educating,
and training PA students in the largely Hispanic South Texas
and mid-Texas/Mexico border areas and supports new faculty
development.
--A Utah program has used its PA training grant to promote
interprofessional teams--an area of strong emphasis in the
Patient Protection and Affordable Care Act. The grant allowed
the program to optimize its relationship with three service-
learning partners, develop new partnerships with three service-
learning sites, and create a model geriatric curriculum that
includes didactic and clinical education.
--An Alabama program used its PA training grant to update and expand
the current health behavior educational curriculum and HIV/STD
training. They were also able to include PA students from other
programs who were interested in rural, primary care medicine
for a four-week comprehensive educational program in HIV
disease diagnosis and management.
Recommendations on fiscal year 2014 Funding
The Physician Assistant Education Association requests the
Appropriations Committee support funding for Title VII health
professions programs at a minimum of $264.4 million for fiscal year
2014.This level of funding is crucial to support the Nation's ability
to produce and maintain highly skilled primary care practitioners,
particularly those who will practice in medically underserved areas and
serve vulnerable populations. Additionally, we ask for the 15 percent
allocation for PA education programs in the Primary Care cluster as
mandated in the Affordable Care Act. This $7.65 million will enable the
education system to produce 1,400 more primary care PAs over 5 years.
We thank the members of the subcommittee for their support of the
health professions and look forward to your continued commitment to
finding solutions to the Nation's health workforce shortage. We
appreciate the opportunity to present the Physician Assistant Education
Association's fiscal year 2014 funding recommendation.
______
Prepared Statement of the Population Association of America/Association
of Population Centers
INTRODUCTION
Thank you, Chairman Harkin, Ranking Member Moran, and other
distinguished members of the subcommittee, for this opportunity to
express support for the National Institutes of Health (NIH) and the
National Center for Health Statistics (NCHS). The Population
Association of America (PAA) and Association of Population Centers
(APC) are pleased to endorse funding recommendations made by the Ad Hoc
Group for Medical Research Funding and Friends of National Center for
Health Statistics for NIH and NCHS, respectively. Specifically, we urge
the Committee to provide the NIH with $32 billion in fiscal year 2014
and to provide the NCHS with the Administration's request, $181.5
million. Further, we encourage the subcommittee to stop the pernicious
cuts to research funding and statistical agencies that squander
invaluable scientific opportunities and threaten the ability of our
members to continue making important contributions towards improving
the health and well being of the American people, to train the next
generation of population scientists, and to prevent the permanent loss
of key longitudinal survey data.
BACKGROUND ON THE PAA/APC AND DEMOGRAPHIC RESEARCH
The Population Association of America (PAA)
(www.populationassociation.org) is a scientific organization comprised
of over 3,000 population research professionals, including
demographers, sociologists, statisticians, and economists. The
Association of Population Centers (APC) (www.popcenters.org) is a
similar organization comprised of over 40 universities and research
groups nationwide that foster collaborative demographic research and
data sharing, translate basic population research for policy makers,
and provide educational and training opportunities in population
studies.
Demography is the study of populations and how or why they change.
Demographers, as well as other population researchers, collect and
analyze data on trends in births, deaths, and disabilities as well as
racial, ethnic, and socioeconomic changes in populations. A key
component of the NIH mission is to support biomedical, social, and
behavioral research that will improve the health of our population. The
health of our population is fundamentally intertwined with the
demography of our population. Recognizing the connection between health
and demography, NIH supports extramural population research programs
primarily through the National Institute on Aging (NIA) and the
National Institute of Child Health and Human Development (NICHD). Below
are examples of the important population research activities that these
Institutes support.
NATIONAL INSTITUTE ON AGING
According to the U.S. Census Bureau, the number of people age 65
and older will more than double between 2010 and 2050 to 88.5 million
or 20 percent of the population; and those 85 and older will increase
three-fold, to 19 million. To inform the implications of our rapidly
aging population, policymakers need objective, reliable data about the
antecedents and impact of changing social, demographic, economic,
health and well being characteristics of the older population. The NIA
Division of Behavioral and Social Research (BSR) is the primary source
of Federal support for basic research on these topics.
In addition to supporting an impressive research portfolio, that
includes the prestigious Centers of Demography of Aging, the NIA BSR
Division also supports several large, accessible data surveys. These
surveys include a new nationally representative study, the National
Health and Aging Trends Study (NHATS), which has enrolled 8,000
Medicare beneficiaries with the goal of studying trends in late-life
disability trends and dynamics. The study also includes a supplement to
examine informal caregivers and their impact on the long-term care
utilization of people with chronic disabilities. NHATS is enabling
researchers to continue important research on late-life disability
trends and those factors (socio-economic, demographic, health) that may
influence changes in disability across different populations.
Another NIA survey, the Health and Retirement Study (HRS), has
become one of the seminal sources of information to assess the health
and socioeconomic status of older people in the U.S. Since 1992, the
HRS has tracked 27,000 people, providing data on a number of issues,
including the role families play in the provision of resources to needy
elderly and the economic and health consequences of a spouse's death.
HRS is so respected that the study is being replicated currently in 30
other countries, providing important data on how the U.S. compares with
other countries whose populations are aging more rapidly. In March
2012, HRS posted genetic data collected voluntarily from over half of
the HRS participants to dbGAP, the NIH's online genetics database.
These data are now available for analysis by qualified researchers to
track the onset and progression of diseases and disabilities affecting
the elderly. In the last year, HRS data were used to report a number of
findings, including a significant study published in The New England
Journal of Medicine in April 2013, which identified the costs of
dementia. The study found that caring for people with dementia in the
United States in 2010 costs between $159 billion to $215 billion, and
these costs could rise dramatically with the increase in the numbers of
older people in coming decades. The researchers found these costs of
care comparable to, if not greater than, those for heart disease and
cancer.
As members of the Friends of the NIA, PAA and APC endorse the
coalition's recommendation that NIA receive $1.4 billion in fiscal year
2014.
EUNICE KENNEDY SHRIVER NATIONAL INSTITUTE ON CHILD HEALTH AND HUMAN
DEVELOPMENT
Since its establishment in 1968, the Eunice Kennedy Shriver NICHD
Center for Population Research has supported research on population
processes and change. As a result of the Institute's recent
reorganization, this research is now housed in the Population Dynamics
Branch. This branch supports research in three broad areas: demography,
HIV/AIDs, other sexually transmitted diseases, and other reproductive
health; and population health, with focus on early life influences and
policy.
NICHD is the major supporter of the national studies that track the
health and well being of children and their families from childhood
through adulthood. These studies include Fragile Families and Child
Well Being, the first scientific study to track the health and
development of children born to unmarried parents; the National
Longitudinal Study of Youth, a multigenerational study of health and
development; and the National Longitudinal Study of Adolescent Health
(Add Health), tracing the effects of childhood and adolescent exposures
on later health. NICHD supports the prompt and widespread release of
demographic data collected with NIH and other Federal Government
funding through the Demographic Data Sharing and Archiving project.
One of the most important population research programs the NICHD
supports is the Research Infrastructure for Demographic and Behavioral
Population Science (DBPop). This program promotes innovation, supports
interdisciplinary research, translates scientific findings into
practice, and develops the next generation of population scientists,
while at the same time providing incentives to reduce the costs and
increase the efficiency of research by streamlining and consolidating
research infrastructure within and across research institutions. DBPop
supports research at 24 private and public research institutions
nationwide, the focal points for the demographic research field for
innovative research and training and the development and dissemination
of widely used large-scale databases.
NIH-funded demographic research provides critical scientific
knowledge on issues of greatest consequence for American families:
marriage and childbearing, childcare, work-family conflicts, and family
and household behavior. Demographic research is having a large impact
in public health, particularly on issues such as infant and child
health and development, and adolescent and young adult health, and
health disparities. Research supported by the Population Dynamics
branch has revealed the critical role of marriage and stable families
in ensuring that children grow up healthy, achieving developmental and
educational milestones. Branch-supported researchers have published a
number of recent findings, including a study, based on Add Health data,
which concluded that women who are overweight or obese years during the
transition from adolescence to adulthood are more likely to later
deliver babies with a higher birth weight, putting the next generation
at a higher risk of obesity-related health outcomes. In another
published study, researchers using genetic and survey data from the
Fragile Families and Child Well Being Study, found that post-partum
depression was most likely among women with both at-risk genetic
profiles and low educational levels.
As members of the Friends of the NICHD, PAA and APC endorse the
coalition's recommendation that the Institute receive $1.2 billion in
fiscal year 2014.
NATIONAL CENTER FOR HEALTH STATISTICS
Located within the Centers for Disease Control (CDC), the National
Center for Health Statistics (NCHS) is the Nation's principal health
statistics agency, providing data on the health of the U.S. population
and backing essential data collection activities. Most notably, NCHS
funds and manages the National Vital Statistics System, which contracts
with the States to collect birth and death certificate information.
NCHS also funds a number of complex large surveys to help policy
makers, public health officials, and researchers understand the
population's health, influences on health, and health outcomes. These
surveys include the National Health and Nutrition Examination Survey
(NHANES), National Health Interview Survey (HIS), and National Survey
of Family Growth. Together, NCHS programs provide credible data
necessary to answer basic questions about the state of our Nation's
health. The wealth of data NCHS collects makes the agency an invaluable
resource for population scientists.
Despite recent steady funding increases, NCHS continues to feel the
effects of long-term funding shortfalls, compelling the agency to
undermine, eliminate, or further postpone the collection of vital
health data. For example, in 2009, sample sizes in HIS and NHANES were
cut, while other surveys, most notably the National Hospital Discharge
Survey, were not fielded. In 2009, NCHS proposed purchasing only ``core
items'' of vital birth and death statistics from the States (starting
in 2010), effectively eliminating three-fourths of data routinely used
to monitor maternal and infant health and contributing causes of death.
Fortunately, Congress and the new Administration worked together to
give NCHS adequate resources and avert implementation of these
draconian measures. Also, funding from the Prevention and Public Health
Fund has been an invaluable source of support for the agency since
fiscal year 2011, providing much needed funding to, for example, add
components to NHANES, purchase updated vital statistics data from the
States, and facilitate the implementation of electronic birth records
in the all States. With funding from the NIH, the agency is also
working to expedite the release of mortality data from the National
Death Index. However, the progress NCHS has made is threatened if the
agencies that it relies on for support (through funding from the HHS
evaluation tap and via interagency agreements) continue to be cut.
Thank you for considering the importance of these agencies under
your jurisdiction that benefit the population sciences. Despite
challenges facing the subcommittee, we urge you to support $32 billion
for NIH and $181.5 million for NCHS in fiscal year 2014. Further, we
urge you to work to reverse the impact sequestration and years of
funding levels below inflation have had on the entire public health
continuum, which includes NIH and NCHS.
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Prepared Statement of Prevent Blindness America
FUNDING REQUEST OVERVIEW
Prevent Blindness America appreciates the opportunity to submit
written testimony for the record regarding fiscal year 2014 funding for
vision and eye health related programs. As the Nation's leading non-
profit, voluntary health organization dedicated to preventing blindness
and preserving sight, Prevent Blindness America maintains a long-
standing commitment to working with policymakers at all levels of
Government, organizations and individuals in the eye care and vision
loss community, and other interested stakeholders to develop, advance,
and implement policies and programs that prevent blindness and preserve
sight. Prevent Blindness America respectfully requests that the
subcommittee provide the following allocations in fiscal year 2014 to
help promote eye health and prevent eye disease and vision loss:
--Provide at least $508,000 million to maintain vision and eye health
efforts at the Centers for Disease Control and Prevention
(CDC).
--Support the Maternal and Child Health Bureau's (MCHB) National
Center for Children's Vision and Eye Health (Center).
--Provide at least $640 million in fiscal year 2014 to sustain
programs under the Maternal and Child Health (MCH) Block Grant.
--Provide $730 million to the National Eye Institute (NEI) in order
to bolster efforts to identify the underlying causes of eye
disease and vision loss, improve early detection and diagnosis,
and advance prevention and treatment efforts.
INTRODUCTION AND OVERVIEW
Vision-related conditions affect people across the lifespan from
childhood through elder years. Good vision is an integral component to
health and well-being, affects virtually all activities of daily
living, and impacts individuals physically, emotionally, socially, and
financially. Loss of vision can have a devastating impact on
individuals and their families. An estimated 80 million Americans have
a potentially blinding eye disease, three million have low vision, more
than one million are legally blind, and 200,000 are more severely
visually blind. Vision impairment in children is a common condition
that affects five to 10 percent of preschool age children. Vision
disorders, including amblyopia (``lazy eye''), strabismus (``cross
eye''), and refractive error are the leading cause of impaired health
in childhood.
Alarmingly, while half of all blindness can be prevented through
education, early detection, and treatment, the NEI reports that ``the
number of Americans with age-related eye disease and the vision
impairment that results is expected to double within the next three
decades.'' \1\ Among Americans age 40 and older, the four most common
eye diseases causing vision impairment and blindness are age-related
macular degeneration (AMD), cataract, diabetic retinopathy, and
glaucoma.\2\ Refractive errors are the most frequent vision problem in
the U.S.--an estimated 150 million Americans use corrective eyewear to
compensate for their refractive error.\3\ Uncorrected or under-
corrected refractive error can result in significant vision
impairment.\4\
To curtail the increasing incidence of vision loss in America,
Prevent Blindness America advocates sustained and meaningful Federal
funding for programs that help promote eye health and prevent eye
disease, vision loss, and blindness; needed services and increased
access to vision screening; and vision and eye disease research. In a
time of significant fiscal constraints, we recognize the challenges
facing the subcommittee and urge you to consider the ramifications of
decreased investment in vision and eye health. Vision loss is often
preventable, but without continued efforts to better understand eye
diseases and conditions, and their treatment, through research, to
develop the public health systems and infrastructure to disseminate and
implement good science and prevention strategies, and to protect
children's vision, millions of Americans face the loss of independence,
loss of health, and the loss of their livelihoods, all because of the
loss of their vision. We thank the subcommittee for its consideration
of our specific fiscal year 2014 funding requests, which are detailed
below.
VISION AND EYE HEALTH AT THE CDC: HELPING TO SAVE SIGHT AND SAVE MONEY
The CDC serves a critical national role in promoting vision and eye
health. Since 2003, the CDC and Prevent Blindness America have
collaborated with other partners to create a more effective public
health approach to vision loss prevention and eye health promotion. The
CDC works to:
--Promote eye health and prevent vision loss.
--Improve the health and lives of people living with vision loss by
preventing complications, disabilities, and burden.
--Reduce vision and eye health related disparities.
--Integrate vision health with other public health strategies.
Prevent Blindness America requests at least $508,000 million in
fiscal year 2014 to maintain vision and eye health efforts of the CDC.
Adequate fiscal year 2014 resources will allow the CDC to continue to
address the growing public health threat of preventable chronic eye
disease and vision loss among at-risk and underserved populations
through increased coordination and integration of vision and eye health
at State and local health departments, and through community health
centers and rural services.
INVESTING IN THE VISION OF OUR NATION'S MOST VALUABLE RESOURCE--
CHILDREN
While the risk of eye disease increases after the age of 40, eye
and vision problems in children are of equal concern. If left
untreated, they can lead to permanent and irreversible visual loss and/
or cause problems socially, academically, and developmentally. Although
more than 12.1 million school-age children have some form of a vision
problem, only one-third of all children receive eye care services
before the age of six.\5\
In 2009, the MCHB established the National Center for Children's
Vision and Eye Health (the Center), a national vision health
collaborative effort aimed at developing the public health
infrastructure necessary to promote eye health and ensure access to a
continuum of eye care for young children.
The Center has established a National Advisory Committee of experts
in ophthalmology, optometry, pediatrics, public health, childcare,
academia, family advocacy, and others who have a stake in the field of
children's vision. Members of the National Advisory Committee provide
recommendations toward national guidelines for quality improvement
strategies, vision screening and developing a continuum of children's
vision and eye health. In addition, they serve as advisors to the
Center as it pursues its goals and objectives. With this support the
Center, will continue to:
--Provide national leadership in dissemination of best practices,
infrastructure development, professional education, and
national vision screening guidelines that ensure a continuum of
vision and eye health care for children;
--Advance State-based performance improvement systems, screening
guidelines, and a mechanism for uniform data collection and
reporting; and
--Provide technical assistance to States in the implementation of
strategies for vision screening, establishing quality
improvement measures, and improving mechanisms for
surveillance.
Prevent Blindness America also requests at least $640 million in
fiscal year 2014 to sustain programs under the MCH Block Grant. The MCH
Block Grant enables States to expand critical health care services to
millions of pregnant women, infants and children, including those with
special health care needs. In addition to direct services, the MCH
Block Grant supports vital programs, preventive and systems building
services needed to promote optimal health.
ADVANCE AND EXPAND VISION RESEARCH OPPORTUNITIES
Prevent Blindness America calls upon the subcommittee to provide
$730 million for the NEI to bolster its efforts to identify the
underlying causes of eye disease and vision loss, improve early
detection and diagnosis of eye disease and vision loss, and advance
prevention and treatment efforts. Research is critical to ensure that
new treatments and interventions are developed to help reduce and
eliminate vision problems and potentially blinding eye diseases facing
consumers across the country.
Through additional support, the NEI will be able to continue to
grow its efforts to:
--Expand capacity for research, as demonstrated by the significant
number of high-quality grant applications submitted in response
to the American Recovery and Reinvestment Act opportunities.
--Address unmet need, especially for programs of special promise that
could reap substantial downstream benefits.
--Fund research to reduce healthcare costs, increase productivity,
and ensure the continued global competitiveness of the United
States.
By providing additional funding for the NEI at the NIH, essential
efforts to identify the underlying causes of eye disease and vision
loss, improve early detection and diagnosis of eye disease and vision
loss, and advance prevention, treatment efforts and health information
dissemination will be bolstered.
CONCLUSION
On behalf of Prevent Blindness America, our Board of Directors, and
the millions of people at risk for vision loss and eye disease, we
thank you for the opportunity to submit written testimony regarding
fiscal year 2014 funding for the CDC's vision and eye health efforts,
the MCHB's National Center for Children's Vision and Eye Health, and
the NEI. Please know that Prevent Blindness America stands ready to
work with the subcommittee and other Members of Congress to advance
policies that will prevent blindness and preserve sight. Please feel
free to contact us at any time; we are happy to be a resource to
subcommittee members and your staff. We very much appreciate the
subcommittee's attention to--and consideration of--our requests.
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\1\ ``Vision Problems in the U.S.: Prevalence of Adult Vision
Impairment and Age-Related Eye Disease in America,'' Prevent Blindness
America and the National Eye Institute, 2008.
\2\ Ibid.
\3\ Ibid
\4\ Ibid.
\5\ ``Our Vision for Children's Vision: A National Call to Action
for the Advancement of Children's Vision and Eye Health, Prevent
Blindness America,'' Prevent Blindness America, 2008.
---------------------------------------------------------------------------
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Prepared Statement of the Pulmonary Hypertension Association (PHA)
PHA fiscal year 2014 LHHS Appropriations Recommendations:
--Protect Federal medical research and patient care programs from
devastating funding cuts through sequestration and deficit
reduction activities.
--$7 billion for HRSA, an increase of $500 million over fiscal year
2012.
--$7.8 billion for CDC, an increase of $1.7 billion over fiscal year
2012, including a proportional increase for the National Center
for Chronic Disease Prevention and Health Promotion (NCCDPHP).
--$32 billion for NIH, an increase of $1.3 billion over fiscal year
2012, including proportional increases for the National Heart,
Lung, and Blood Institute (NHLBI); National Center for
Advancing Translational Sciences (NCATS); Office of Rare
Diseases Research (ORDR); Office of the Director (OD); and
other NIH Institutes and Centers to facilitate adequate growth
in the PH research portfolio.
Chairman Harkin, Ranking Member Moran, and distinguished members of
the subcommittee, thank you for the opportunity to submit testimony on
behalf of PHA. It is my honor to represent the hundreds of thousands of
Americans who are affected by the devastating disease pulmonary
hypertension (PH).
PHA has served the PH community for over 20 years. In 1990, three
PH patients found each other with the help of the National Organization
for Rare Disorders and shortly thereafter founded PHA. At that time,
the condition was largely unknown amongst the general public and within
the medical community; there were fewer than 200 diagnosed cases of the
disease. Since then, PHA has grown into a nationwide network of over
20,000 members and supporters, including over 240 support groups across
the country.
PHA is dedicated to improving treatment options and finding cures
for PH, and supporting affected individuals through coordinated
research, education, and advocacy activities. Since 1996, nine
medications for the treatment of PH have been approved by the Food and
Drug Administration (FDA), eight of those since 2001. These innovative
treatment options represent important steps forward in the medical
understanding of PH and the care of PH patients, but more needs to be
done to end the suffering caused by this disease. PH remains a serious
and life-altering condition.
PH is a debilitating and often fatal condition where the blood
pressure in the lungs rises to dangerously high levels. In PH patients,
the walls of the arteries that take blood from the right side of the
heart to the lungs thicken and constrict. As a result, the right side
of the heart has to pump harder to move blood into the lungs, causing
it to enlarge and ultimately fail. Symptoms of PH include shortness of
breath, fatigue, chest pain, dizziness and fainting.
PH can be idiopathic, and occur without a known cause, or be
secondary to other conditions, such as HIV, scleroderma, lupus, blood
clots, sickle cell, and liver disease. While PH impacts individuals of
all races, genders, and ages, preliminary data from the Registry to
Evaluate Early and Long Term Pulmonary Arterial Hypertension Disease
Management (REVEAL Registry) suggests that women develop PH at a 4:1
ratio to men.
PH is a chronic condition that is costly in terms of quality of
life and healthcare expenditures. The symptoms of PH are frequently
misdiagnosed, leaving patients with the false impression that they have
a minor pulmonary or cardiovascular condition. By the time many
patients receive an accurate diagnosis, the disease has progressed to a
late stage, which makes it difficult if not impossible to treat, even
with drastic action such as a heart or lung transplant. While PH
remains incurable with a poor survival rate, new treatment options are
improving lives and enabling some patients to manage their condition
for 20 years or longer.
I would like to extend my sincere gratitude to the subcommittee for
your historic support of PH programs at HRSA, CDC, and NIH. Thanks to
your leadership, the PH research portfolio at NIH has advanced and
improved our understanding of the disease, and awareness of PH by the
general public has led to earlier diagnosis and improved health
outcomes for patients. Please continue to support PH activities moving
forward.
Deficit Reduction and Sequestration
Our Nation's investment in biomedical research, particularly
through NIH, is an engine that drives economic growth while improving
health outcomes for patients. NIH supports a significant research
portfolio in pulmonary hypertension with critical research activities
conducted at academic health centers across the country. The Federal
commitment to this research portfolio has been the catalyst behind
major breakthroughs that have improved our scientific understanding of
PH and led to better health and healthcare for PH patients.
While meaningful progress has been made, PH remains a fatal
condition and researchers across the country continue to work towards
the goal of finding a cure. If Federal funding for NIH is substantially
reduced, the current effort to capitalize on recent advancements and
improve treatment options will face a serious setback. Ongoing research
projects, including those being conducted at academic health centers
across the country, will stall and critical new research projects will
not be initiated.
In addition, reducing support for Federal biomedical research
efforts sends a powerful message to the next generation about our
country's lack of commitment to this field. Many talented young people
interested in biomedical research will seek other career paths. Those
who become the next generation of researchers will face increased
competition for their talents from foreign competitors who are
investing in their biomedical research infrastructure.
Over the past 15 years, 9 therapies indicated to treat PH have been
developed by industry and approved by FDA. PH is a chronic, disabling,
and often fatal condition and the advent of current therapies has
extended life and improved quality of life for individuals with the
disease. However, the treatments are complex and come with significant
side effect profiles. Moreover, current therapies do not completely
restore affected individuals, which means that a life with PH can be
difficult for both patients and caregivers.
More work is in progress in this area, but if healthcare programs
endure significant funding cuts, PH patients may see few improvements.
Funding cuts to discretionary health programs have the potential to
drastically limit resources at FDA, undermining the agency's efforts to
facilitate expeditious treatment development and potentially impair
current oversight activities. Further, any cuts to the Centers for
Medicare and Medicaid Services (CMS) have the potential to jeopardize
access to care for PH patients by creating cost-driven barriers to
available therapies.
As you work with your colleagues in Congress on deficit, budget,
and appropriations issues please support the PH community by actively
pursuing meaningful funding increases for critical medical research and
healthcare programs.
Health Resources and Services Administration
PHA asks that you support HRSA by providing the agency with a
meaningful funding increase of $500 million in fiscal year 2014. Such a
funding increase would allow the agency to initiate important new
activities such as partnering with the PH experts to improve the
criteria for determining lung and heart-lung transplantation for PH
patients. We ask for your leadership in encouraging HRSA, specifically
the United Network for Organ Sharing, to engage in active and
meaningful dialogue with medical experts at the REVEAL Registry. Such a
dialogue has the potential to improve the methodology used to determine
lung transplantation eligibility for PH patients and to improve
survivability and health outcomes following a transplantation
procedure.
Centers for Disease Control and Prevention
PHA joins other voluntary health groups in requesting that you
support CDC by providing the agency with an appropriation of $7.8
billion in fiscal year 2014. Such a funding increase would allow CDC to
undertake critical PH education and awareness activities, which would
promote early detection and appropriate intervention for PH patients.
We are grateful to the subcommittee for providing past support of
PHA's Pulmonary Hypertension Awareness Campaign. We know for a fact
that Americans are dying due to a lack of awareness of PH and a lack of
understanding about the many new treatment options. This unfortunate
reality is particularly true among minority and underserved populations
and citizens in rural areas remote from medical centers with PH
expertise. More needs to be done to educate both the general public and
healthcare providers if we are to save lives.
To that end, PHA has utilized the funding provided through the CDC
to 1) launch a successful media outreach campaign focusing on both
print and online outlets 2) expand our support programs for previously
underserved patient populations and 3) establish PHA Online University,
an interactive curriculum-based website for medical professionals that
targets pulmonary hypertension experts, primary care physicians,
specialists in pulmonology/cardiology/rheumatology, and allied health
professionals. The site is continually updated with information on
early diagnosis and appropriate treatment of pulmonary hypertension. It
serves as a center point for discussion among PH-treating medical
professionals and offers Continuing Medical Education and CEU credits
through a series of online classes.
Early diagnosis of PH and timely intervention with innovative
therapies can significantly improve health outcomes for PH patients. In
some instances, early intervention can mitigate the need for more
drastic treatment and costly treatment options, like heart-lung
transplantation. In order to promote early recognition and accurate
diagnosis, PHA asks the subcommittee to provide CDC with additional
funding in fiscal year 2014 so that important PH education and
awareness activities can be initiated through NCCDPHP.
National Institutes of Health
PHA joins the public health community in requesting that you
support NIH by providing the agency with an appropriation of $32
billion in fiscal year 2014. This modest funding increase would ensure
that biomedical research inflation does not result in a loss of
purchasing power at NIH, critical new initiatives like the Cures
Acceleration Network (CAN) are adequately supported, and the PH
research portfolio can continue to progress.
Less than two decades ago, a diagnosis of PH was essentially a
death sentence, with only one approved treatment for the disease.
Thanks to advancements made through the public and private sector,
patients today are living longer and better lives with a choice of nine
FDA approved medications. Sustained investment in basic, translational,
and clinical research can ensure that we capitalize on recent
advancement and emerging opportunities to speed the discovery of
improved treatment options and cures.
Expanding clinical research remains a top priority for patients,
caregivers, and PH investigators. We are particularly interested in
establishing a pulmonary hypertension research network. Such a network
would link leading researchers around the United States, providing them
with access to a wider pool of shared patient data. In addition, the
network would provide researchers with the opportunities to collaborate
on studies and to strengthen the connections between basic and clinical
science in the field of pulmonary hypertension research. Such a network
is in the tradition of the NHLBI, which, to its credit and to the
benefit of the American public, has supported numerous similar networks
including the Acute Respiratory Distress Syndrome Network and the
Idiopathic Pulmonary Fibrosis Clinical Research Network. We ask that
you provide NHLBI with sufficient resources and encouragement to move
forward with the establishment of a PH network in fiscal year 2014.
We applaud the recent establishment of NCATS at NIH. Housing
translational research activities at a single Center at NIH will allow
these programs to achieve new levels of success. Initiatives like CAN
are critical to overhauling the translational research process and
ensuring that more breakthroughs in basic research are developed into
meaningful diagnostic tools and treatment options that directly benefit
patients. In addition, new efforts like taking the lead on drug
repurposement hold the potential to speed new treatment to patients,
particularly patients who struggle with rare or neglected diseases. We
ask that you support NCATS and provide adequate resources for the
Center in fiscal year 2014.
Thank you for your time and your consideration of our requests.
Please contact me if you have any questions or if you require any
additional information.
______
Prepared Statement of the Research Working Group of the Federal AIDS
Policy Partnership--April 2013
Chairman Harkin, Ranking Member Moran, and Members of the
Committee, thank you for the opportunity to provide testimony on the
National Institutes of Health (NIH) budget overall and for AIDS
research in fiscal year 2014 (fiscal year 2014). Tomorrow's scientific
and medical breakthroughs depend on your vision, leadership, and
commitment to robust NIH funding this year. To this end, the Research
Working Group (RWG) urges this Committee to support--at minimum--a
funding target of $35.98 billion in fiscal year 2014 to maintain the
United States' position as the world leader in medical research and
innovation.
Investments in health research via the NIH have paid enormous
dividends in the health and wellbeing of people in the U.S. and around
the world. NIH-funded HIV and AIDS research has supported innovative
basic science for better drug therapies, evidence-based behavioral and
biomedical prevention interventions, and vaccines that have saved and
improved the lives of millions, and holds great promise for
significantly reducing HIV infection rates and providing more effective
treatments for those living with HIV/AIDS in the coming decade.
Despite these advances, the number of new HIV/AIDS cases continues
to rise in various populations in the U.S. and around the world. There
are over one million HIV-infected people in the U.S., the highest
number in the epidemic's 31-year history; additionally over 50,000
Americans become newly infected every year. The evolving HIV epidemic
in the U.S. disproportionately affects the poor, sexual and racial
minorities, and the most disenfranchised and stigmatized members of our
communities. However, with proper funding coupled with the promotion of
evidence-based policies, we can capitalize on the ongoing scientific
progress in prevention science, vaccines, and finding a cure for HIV,
as well as addressing the comorbid illnesses such as viral hepatitis
and tuberculosis that affect patients with HIV.
Major advances over the last few years in HIV prevention
technologies--in particular with microbicides, HIV vaccines,
circumcision, antiretroviral treatment as prevention, and pre-exposure
prophylaxis (PrEP) using antiretrovirals--demonstrate that adequately
resourced NIH programs can transform our lives. Federal support for
AIDS research has also led to new treatments for other diseases,
including cancer, heart disease, Alzheimer's, hepatitis, osteoporosis,
and a wide range of autoimmune disorders. Over the years, the NIH has
sponsored the evaluation of a host of vaccine candidates, some of which
are advancing to efficacy trials. The successful iPrEx and HPTN 052
trials have shown the potential of antiretroviral drugs to prevent HIV
infection. Moreover, increased funding will support the future testing
of new microbicides and therapeutics in the pipeline via the
implementation of a newly restructured, cross-cutting HIV clinical
trials network that translates NIH-funded scientific innovation into
critical quality-of-life gains for those most affected with HIV.
It is also essential to note that NIH-funded HIV pathogenesis and
clinical research has contributed substantially to our understanding of
potential curative approaches. These include, but are not limited to,
therapeutic vaccines and other immune-system modulators, gene
therapies, and drugs that can purge HIV from its various reservoirs in
the body. These candidates, many of which are now being further
explored in human studies, are the culmination of nearly three decades
of steadfast public support for basic science and pilot-phase
research--support that must continue if we are to end the epidemic once
and for all.
Increased funding for the NIH in fiscal year 2014 makes good
bipartisan economic sense, especially in shaky times. Robust funding
for the NIH overall will enable research universities to pursue
scientific opportunity, advance public health, and create jobs and
economic growth. In every State across the country, the NIH supports
research at hospitals, universities, private enterprises, and medical
schools. This includes the creation of jobs that will be essential to
future discovery. Sustained investment is also essential to train the
next generation of scientists and prepare them to make tomorrow's HIV
discoveries. NIH funding puts 350,000 scientists to work at research
institutions across the country. According to the NIH, each of its
research grants creates or sustains six to eight jobs, and NIH-
supported research grants and technology transfers have resulted in the
creation of thousands of new, independent private-sector companies.
Strong, sustained NIH funding is a critical national priority that will
foster better health and economic revitalization.
Since 2003, funding for the NIH has failed to keep up with our
existing research needs--damaging the success rate of approved grants
and leaving very little money to fund promising new research. The real
value of the increases prior to 2003 has been precipitously reduced
because of the relatively higher inflation rate for the cost of
research and development activities undertaken by the NIH. According to
the Biomedical Research and Development Price Index, which calculates
how much the NIH budget must change each year to maintain purchasing
power, between fiscal year 2003 and fiscal year 2011, the cost of NIH
activities increased by 32.8 percent. By comparison, the overall NIH
budget increased by $3.6 billion, or 13.4 percent, over fiscal year
2003. So in real terms, the NIH has already sustained budget decreases
of close to 20 percent over the past decade due to inflation alone. As
such, any further cuts to NIH on top of sequestration will have the
clear and devastating effects of undermining our Nation's leadership in
health research and our scientists' ability to take advantage of the
expanding opportunities to advance health care. The race to find better
treatments and a cure for cancer, heart disease, AIDS, and other
diseases, and for controlling global epidemics like AIDS, tuberculosis,
and malaria, all depend on a robust long-term investment strategy for
health research at NIH.
In conclusion, the RWG calls on Congress to continue the bipartisan
Federal commitment towards combating HIV as well as other chronic and
life-threatening illnesses by increasing funding for the NIH to $35.98
billion in fiscal year 2014, including funds for transfer to the Global
Fund for HIV/AIDS, Tuberculosis and Malaria. A meaningful commitment to
stemming the epidemic and securing the well being of people with HIV
cannot be met without prioritizing the research investment at the NIH
that will lead to tomorrow's lifesaving vaccines, treatments, and
cures. Thank you for the opportunity to provide these written comments.
______
Prepared Statement of Rotary International
Chairman Harkin, members of the subcommittee, Rotary International
appreciates this opportunity to submit testimony in support of the
polio eradication activities of the U. S. Centers for Disease Control
and Prevention (CDC). The Global Polio Eradication Initiative (GPEI) is
an unprecedented model of cooperation among national Governments, civil
society and UN agencies working together to reach the most vulnerable
children through a safe, cost-effective public health intervention of
polio immunization, one which is increasingly being combined with
opportunistic, complementary interventions such as the distribution of
life-saving vitamin A drops. For fiscal year 2014 Rotary International
is seeking $146.3 million for the polio eradication efforts of the CDC
to support full implementation of the polio eradication strategies and
innovations outlined in the new Polio Eradication and Endgame Strategic
Plan (2013-2018).
Progress in the Global Program to Eradicate Polio
Significant strides were made toward polio eradication in 2012
thanks to this committee's leadership in appropriating funds for the
polio eradication activities of the CDC.
--India has not had a case of polio for more than 2 years.
--Eradication efforts have led to more than a 99 percent decrease in
cases since the launch of the GPEI in 1988. In 2012 there were
fewer cases in fewer places than at any point in recorded
history with only 223 cases of polio--a 65 percent decrease
compared to 2011. All but six of these cases were in the three
remaining polio endemic countries of Afghanistan, Pakistan, and
Nigeria. Countries will remain at risk for outbreaks until
polio has been eradicated in the remaining places where it
persists.
--As of 1 May 2013, only 24 cases of polio have been reported in 2013
(50 percent the level of 2012).
--Incidence of type 3 polio is at historically low levels. Pakistan
has not reported a case of type 3 polio for 1 year and Nigeria
is now the only country with type 3 poliovirus circulation.
--Angola and the Democratic Republic of Congo, two of four countries
considered to have reestablished transmission of polio,
reported no cases of polio in 2012. Chad, another of the
reestablished transmission countries has not reported a case of
polio since June of 2012.
A new Polio Eradication and Endgame Strategic Plan (2013-2018) lays
out the strategies for the certification of the eradication of wild
poliovirus by 2018 at a total global cost of U.S. $5.5 billion. This
new plans builds on the lessons learned from the successful eradication
of polio to date and the substantial advances in technology in 2012.
The timely availability of funds remains essential to the achievement
of a polio free world. The United States has been the leading public
sector donor to the Global Polio Eradication Initiative. Members of
U.S. Rotary clubs appreciate the United States' generous support.
However, this support has declined as a proportion of the GPEI
expenditures from approximately 19 percent just 5 years ago to 13
percent in 2012. A resumption of funding to the earlier 19 percent
level would ensure vital funding for the GPEI and send a strong signal
of continued leadership and commitment by the United States as the new
strategic plan is implemented. Notably, funding provided by the polio
affected countries themselves and by private sector donors--led by
Rotary International and the Bill & Melinda Gates Foundation, has
increased in recent years. The ongoing support of donor countries, like
the United States, is essential to assure the necessary human and
financial resources are made available to polio-endemic and at risk
countries to take advantage of the window of opportunity to forever rid
the world of polio. Continued leadership of the United States is
essential to capitalize on past progress and certify the world polio
free by the end of 2018.
The Role of Rotary International
Rotary International, a global association of more than 34,000
Rotary clubs in more than 170 countries with a membership of over 1.2
million business and professional leaders (more than 345,000 of which
are in the U.S.), has been committed to battling polio since 1985.
Rotary International has contributed more than U.S. $1.2 billion toward
a polio free world--representing the largest contribution by an
international service organization to a public health initiative ever.
Rotary also leads the United States Coalition for the Eradication of
Polio, a group of committed child advocates that includes the March of
Dimes Foundation, the American Academy of Pediatrics, the Task Force
for Global Health, the United Nations Foundation, and the U.S. Fund for
UNICEF. These organizations join us in thanking you for your support of
the GPEI.
The Role of the U.S. Centers For Disease Control and Prevention
Rotary commends CDC for its leadership in the global polio
eradication effort, and greatly appreciates the subcommittee's support
of CDC's polio eradication activities. The United States is the leader
among donor nations in the drive to eradicate this crippling disease.
Congressional support, in fiscal year 2012 and fiscal year 2013 enabled
CDC to:
--continue engagement of the Emergency Operations Center (EOC) to
harness agency-wide technical expertise to implement the
agency's polio response in a rapid and efficient manner;
--develop a ``dash board'' monitoring system to collect, analyze, and
visualize key indicators of campaign performance in real time
to identify and address issues in advance to ensure high
quality campaigns. This system, modeled on lessons from India
and Pakistan, was piloted in Nigeria in July 2012 in 11 States
and then fully implemented during the October campaigns.
--implement a nomad strategy in Nigeria which identified more than
560,000 children under 5 years old through census taking
activities; reached more than 22,000 settlements with polio
vaccine; and identified more than 4,000 settlements never
visited by a vaccination team.
--provide the trained and experienced human resources to strengthen
detection of polioviruses through the Stop Transmission of
Polio (STOP) volunteer consultants. Since the December 2, 2011
EOC activation, the STOP program has deployed more than 500
individuals in 33 countries. CDC also developed the National
STOP program (NSTOP) to build local capacity by recruiting
highly trained public health professionals to work at the State
and local levels to support polio eradication. In Nigeria,
NSTOP is an innovative strategy that has deployed 70 staff
across northern polio affected States.
--purchase 195 million doses of oral polio vaccine for use in polio
campaigns in 2012;
--conduct AFP surveillance reviews, and support WHO Expanded Program
on Immunization (EPI) reviews; and
--provide technical and programmatic assistance to the global polio
laboratory network through the Polio Laboratory in CDC's
Division of Viral Diseases. CDC's labs provide critical
diagnostic services and genomic sequencing of polioviruses to
help guide disease control efforts. CDC will continue to serve
as the global reference laboratory, while expanding
environmental surveillance in countries to serve as a ``safety
measure'' to detect any polioviruses circulating in areas
without cases.
Continued funding will allow CDC to fully capitalize on the
resources of the Emergency Operation Center to provide direct support
and build capacity to continue intense supplementary immunization
activities in the remaining polio-affected countries, continue
leadership on data management to drive evidence-based decisionmaking,
and continue to implement strategies to increase effective management
and accountability. These funds will also help maintain essential
certification standard surveillance.
Benefits of Polio Eradication
Since 1988, over 10 million people who would otherwise have been
paralyzed are walking because they have been immunized against polio.
Tens of thousands of public health workers have been trained to manage
massive immunization programs and investigate cases of acute flaccid
paralysis. Cold chain, transport and communications systems for
immunization have been strengthened. The global network of 145
laboratories and trained personnel established by the GPEI also tracks
measles, rubella, yellow fever, meningitis, and other deadly infectious
diseases and will do so long after polio is eradicated.
A study published in the November 2010 issue of the journal Vaccine
estimates that the GPEI could provide net benefits of at least $40-50
billion. Polio eradication is a cost-effective public health investment
with permanent benefits. On the other hand, as many as 200,000 children
could be paralyzed in the next 10 years if the world fails to
capitalize on the more than $9 billion already invested in eradication.
Success will ensure that the significant investment made by the U.S.,
Rotary International, and many other countries and entities, is
protected in perpetuity.
ROTARY INTERNATIONAL AND THE ROTARY FOUNDATION PUBLIC DISCLOSURE OF FEDERAL GRANT FUNDS RECEIVED FROM OCTOBER
2008 TO JANUARY 31, 2013
[Funds reported in the fiscal year they were received, in thousands of U.S. dollars]
----------------------------------------------------------------------------------------------------------------
Agency/
Organization Subcontract Program Contract Term, Fiscal Year Funding
Agreement Value, Period (July-June) Received
----------------------------------------------------------------------------------------------------------------
Rotary International.......... Open World Open World Annual, budget \1\ Fiscal year 160
Leadership Program. submitted and 2009. 240
Center. approved Fiscal year 2010 231
annually. Fiscal year 2011 289
Fiscal year 2012 20
\2\ Fiscal year
2013.
---------
Total................... ................ ................ ................ ................ 940
----------------------------------------------------------------------------------------------------------------
Rotary International.......... U.S. Agency for Supportive 45 months Fiscal Year 2011 --
International Environments commencing May Fiscal Year 2012 123
Development. for Health 2011; Award \2\ Fiscal Year 95
(Cost (WASHPlus). ceiling 2013.
Reimbursable $667,292;
Subagreement contract ending
with FHI January 2015.
Development 360
LLC).
---------
Total................... ................ ................ ................ ................ 218
----------------------------------------------------------------------------------------------------------------
Rotary International.......... U.S. Agency for Environmental 18 months \1\ Fiscal Year 59
International Health commencing May 2009. 102
Development. Indefinite 2008, $215,000; Fiscal Year 2010 54
(Task Order Quantity contract Fiscal Year 2011
Subcontract Contract. completed in
agreement with (EH IQC). CLIN 3 November 2010.
CDM Water
International Sanitation and
Inc). Hygiene
Technical
Assistance
(WASHTA).
---------
Total................... ................ ................ ................ ................ 215
----------------------------------------------------------------------------------------------------------------
Rotary International.......... U.S. Agency for World Peace One year \1\ Fiscal Year 25
International Fellow Pilot commencing 2009. 25
Development. Internship September 2008, Fiscal Year 2010
Program. $50,000;
contract
completed in
September 2009.
---------
Total................... ................ ................ ................ ................ 50
----------------------------------------------------------------------------------------------------------------
Total funding by Fiscal Year \1\ Fiscal Year 244
for Rotary International and 2009. 367
The Rotary Foundation:. Fiscal Year 2010 285
Fiscal Year 2011 412
Fiscal Year 2012 115
\2\ Fiscal Year
2013.
---------
1,423
----------------------------------------------------------------------------------------------------------------
\1\ Fiscal Year 2009 figures starting October 1, 2008.
\2\ Fiscal Year 2013 figures as of January 31, 2013.
______
Prepared Statement of the Ryan White Medical Providers Coalition
Introduction
My name is James L. Raper, DSN, CRNP, JD, FAANP, FAAN; Director,
1917 HIV/AIDS Outpatient Clinic at the University of Alabama at
Birmingham; and Immediate Past Co-Chair of the Ryan White Medical
Providers Coalition. I respectfully submit testimony on behalf of the
1917 HIV/AIDS Outpatient Clinic at the University of Alabama at
Birmingham and the Ryan White Medical Providers Coalition, which I co-
chaired from 2010-2013. Thank you for the opportunity to describe the
lifesaving HIV/AIDS care and treatment provided by Ryan White Part C
funded programs, including my own clinic.
The 1917 Clinic is a dedicated, not-for profit outpatient HIV/AIDS
medical and dental clinic established in 1988 at the University of
Alabama at Birmingham. Ryan White Part C funding provides critical
assistance in helping the clinic meet the needs of our patients. Today,
35 percent of the 1917 Clinic's patients are uninsured and would be at
risk for losing access to lifesaving services without Ryan White
Program funding.
The 1917 Clinic provides comprehensive outpatient HIV primary care
services to residents of Jefferson, Walker, Winston, Cullman, Blount,
St. Clair, and Shelby counties. Although our service area technically
includes only these seven counties, we serve people with HIV/AIDS
throughout Alabama and its neighboring States. In February 2013, the
1917 Clinic absorbed 800+ new patients from the previously Ryan White
Part C funded Cooper Green Hospital's St. Georges' Clinic, which closed
on January 31, 2013. The 1917 Clinic is now providing care to 30
percent of all known adults living with HIV/AIDS in Alabama.
The clinic offers the range of primary care and social services
critical to successful HIV treatment, including primary medical and
oral health care; on-site case management; mental health and substance
abuse treatment services; onsite access to clinical trials; adherence,
spiritual, risk reduction, and nutrition counseling; infusion therapy,
coordination of hospital discharge planning, and home health care/
hospice referral. To avoid emergency room visits, the 1917 Clinic
provides `sick call' services five days a week. Subspecialty care is
available at the University's Kirklin Clinic--which is located just two
blocks from the 1917 Clinic.
In addition to critical funding that Ryan White Part C provides
through direct Federal grants for comprehensive medical care programs
like the 1917 Clinic, most Ryan White Part C clinics (including the
1917 Clinic) also receive support from other parts of the Ryan White
Program. Those funds help provide access to medication, additional
medical care, dental services; and key support services, such as case
management and transportation, all of which are essential components of
highly effective Ryan White HIV care that results in excellent outcomes
for our patients.
Adequate funding of the Ryan White Program is essential to
providing both effective and efficient care for individuals living with
HIV/AIDS, and I thank the subcommittee for its support of the Ryan
White Part C Program. And while I am grateful for this support, and
understand that times are tough, I request $236.6 million for Ryan
White Part C programs in fiscal year 2014. While I know that this is a
lot of funding, it is in fact well below the estimated need. Ryan White
medical providers will spend these dollars effectively and efficiently
caring for patients and achieving excellent health and cost outcomes.
Ryan White Part C Programs Support Comprehensive, Expert and Effective
HIV Care
Part C of the Ryan White Program funds comprehensive, expert and
effective HIV care and treatment--services that are directly
responsible for the dramatic decrease in AIDS-related mortality and
morbidity over the last decade. The Ryan White Program supported the
development of expert HIV care and treatment programs that have become
patient-centered medical homes for individuals living with this
serious, chronic condition. In 2011, a ground-breaking clinical trial--
named the ``scientific breakthrough of the year'' by Science magazine--
found that HIV treatment not only saves the lives of people with HIV,
but also reduces HIV transmission by more than 96%--proving that HIV
treatment is also HIV prevention.
The comprehensive, expert HIV care model that is supported by the
Ryan White Program has been highly successful at achieving positive
clinical outcomes with a complex patient population.\1\ In a
convenience sample of eight Ryan White-funded Part C programs ranging
from the rural South to the Bronx, retention in care rates ranged from
87 to 97 percent. In estimates from the Centers for Disease Control and
Prevention (CDC)--only 37 percent of all people with HIV are in regular
care nationally.\2\ Once in care, patients served at Ryan White-funded
clinics do well--with 75 to 90 percent having undetectable levels of
the virus in their blood. This is much higher than the estimate from
the CDC that just 25 percent of all people living with HIV in the U.S.
are virally suppressed.
Investing in Ryan White Part C Programs Saves Both Lives and Money
Early and reliable access to HIV care and treatment both helps
patients with HIV live relatively healthy and productive lives and is
more cost effective. One study from the 1917 Clinic found that patients
treated at the later stages of HIV disease required 2.6 times more
health care dollars than those receiving earlier treatment meeting
Federal HIV treatment guidelines. On average it costs $3,501 per person
per year to provide the comprehensive outpatient care and treatment
available at Part C funded programs. The comprehensive services
provided often include lab work, STI/TB/Hepatitis screening, ob/gyn
care, dental care, mental health and substance abuse treatment, and
case management.
Current Challenges--Future Promise
However, this effective and comprehensive HIV care model is not
completely supported by Medicaid or most private insurance. While many
Ryan White Program clients have some form of insurance coverage,
without the Ryan White Program, they would risk falling out of care.
Barriers include poor reimbursement rates; benefits designed for
healthier populations that fail to cover critical services, such as
care coordination; and inadequate coverage for other important
services, such as extended medical visits, mental health and substance
use treatment. Full implementation of the Patient Protection and
Affordable Care Act plus continuation of the Ryan White Program will
dramatically improve health access and outcomes for many more people
living with HIV disease.
Ryan White Programs Are Struggling to Meet Demand
Additionally, as a result of funding cuts and shortfalls, as well
as increased patient demand, a 2012 Ryan White Medical Providers
Coalition (RWMPC) survey of over 100 Ryan White Part C providers
nationwide demonstrated that approximately half of the programs
surveyed had to make cuts or other program changes. More specifically:
--54 percent reported that they reduced or cut services, including 27
percent that reduced or cut support for medications, and 19
percent that reduced coverage for laboratory monitoring;
--40 percent report longer wait times for new and/or existing patient
appointments;
--31 percent laid off staff and 30 percent froze hiring.
--8 percent closed their clinics to new patients.
Upon the implementation of sequestration and other funding cuts,
Ryan White Part C clinics indicated in the RWMPC survey that they would
need to make additional reductions, including:
--66 percent of clinics further cutting or reducing services;
--57 percent further cutting staff; and
--13 percent closing their clinics to new patients.
Fully Funding and Maintaining Ryan White Part C Programs Is Essential
Because of both the inadequacy of insurance coverage for people
with complex conditions like HIV and the fact that some individuals
will remain uncovered, even after Patient Protection & Affordable Care
Act implementation, fully funding and maintaining the Ryan White
Program is essential to providing comprehensive, expert and effective
HIV care nationwide.
While RMWPC understands the difficulty of the current economic
climate, reducing funding for HIV care and treatment is not cost-
effective, will hamper the ability of Ryan White Part C programs to
achieve the best possible patient outcomes and may fail to prevent new
infections thereby jeopardizing our Nation's ability to capitalize on
recent scientific breakthroughs that could move us toward an AIDS-free
generation. Without ready access to comprehensive, expert, and
effective HIV care and treatment, patients will use expensive emergency
care more, and receive less effective treatment at later stages of HIV
disease. Restricted access to effective HIV care and treatment also
will result in reduced rates of retention in care, resulting in
increased patient viral loads and increased numbers of HIV infections.
And most importantly, there will be those who will lose their lives
because they are not able to access these lifesaving services.
Conclusion
These are challenging economic times. While we recognize the
significant fiscal constraints Congress faces in allocating limited
Federal dollars, the significant financial and patient pressures that
we face in our clinics throughout the United States propel us to make
the fiscal year 2014 request of $236.6 million for Ryan White Part C
programs. This funding would help to support medical providers
nationwide in delivering life-saving, effective HIV/AIDS care and
treatment to their patients, and save millions is wasted health care
dollars treating patients too late or in inappropriate, higher cost
settings.
Thank you so much for your time and consideration of this request.
If you have any questions, please do not hesitate to contact me at
[email protected] or the Ryan White Medical Providers Coalition Convener,
Jenny Collier, at [email protected].
---------------------------------------------------------------------------
\1\ See Improvement in the Health of HIV-Infected Persons in Care:
Reducing Disparities at http://cid.oxfordjournals.org/content/early/
2012/08/24/cid.cis654.full.pdf+html.
\2\ See CDC's HIV in the United States: The Stages of Care http://
www.cdc.gov/nchhstp/
newsroom/docs/2012/Stages-of-CareFactSheet-508.pdf.
---------------------------------------------------------------------------
______
Prepared Statement of the Safe States Alliance
The Safe States Alliance, the national membership association
representing public health injury and violence prevention
professionals, appreciates the opportunity to provide testimony in
support of the Centers for Disease Control and Prevention (CDC). Safe
States Alliance supports the President's request to increase funding
for the CDC's National Center for Injury Prevention and Control (Injury
Center) including $20 million for the National Violent Death Reporting
System (NVDRS), $10 million for firearm violence prevention research,
and $5 million to evaluate the Rape Prevention and Education Program.
Additionally, Safe States requests an additional $13 million to support
the Core Violence and Injury Prevention Program (VIPP), as well as
restoration of CDC's Preventive Health and Health Services Block Grant
(Prevent Block Grant) to $100 million.
In 1985, the Institutes of Medicine (IOM) first called attention to
the lack of recognition and funding for injury and violence prevention
(IVP) as a public health issue in the United States.\1\ Although some
progress has been made in subsequent years, injuries and violence
continue to have a significant impact on the health of Americans and
the healthcare system, as injuries remain the leading cause of death
for Americans ages one to 44.\2\ As a result of injuries and violence,
more than 29 million people are treated in emergency departments each
year, two million are hospitalized, and approximately 180,000 people
die--one person every three minutes. Every 45 minutes, one of those
preventable deaths is a child.2 In a single year, injuries and violence
will ultimately cost $406 billion in medical costs and lost
productivity.\3\ In 2009, CDC estimates that injuries accounted for
nearly half of all deaths among Americans from age one to 44. This is
more than deaths from non-communicable diseases and infectious diseases
combined.\4\
At the Federal level, the CDC Injury Center serves as the focal
point for the public health approach to injury and violence prevention.
Despite the enormous toll of injuries and violence and the existence of
cost-effective interventions, there is no dedicated and ongoing
Federal, State, or local funding to adequately respond to these
problems. The CDC Injury Center only receives 2 percent of the CDC/
Agency for Toxic Substances and Disease Registry (ATSDR) budget to
address the significant burden of injuries and violence nationwide. In
fiscal year 2012, the total Injury Center budget was only $137.7
million, down from $147.8 million in fiscal year 2010. The 5.1 percent
cut imposed by sequestration further reduces the Injury Center's
funding by an additional $7 million. The net impact is a 12 percent cut
to the Injury Center since fiscal year 2010 and a funding level below
fiscal year 2000 levels.
Given its limited budget, the CDC Injury Center currently provides
capacity building grants to only 20 State health departments (SHDs)
through the Core Violence and Injury Prevention Program (VIPP). Core
VIPP is comprised of multiple components including: Basic Prevention
(20 States); Regional Network Leaders (five States); Surveillance
Quality Improvement (four States); Older Adult Falls Prevention (three
States); and Motor Vehicle/Child Injury Prevention (four States). With
an additional investment of just $13 million, the CDC Injury Center
would be able to support injury and violence prevention programs in all
States and territories, much as it does for other key public health
issues, such as infectious and chronic diseases.
The National Violent Death Reporting System (NVDRS) is a State-
based surveillance system that uses information from a variety of
States and local agencies and sources--medical examiners, coroners,
police, crime labs and death certificates--to form a more complete
picture of the circumstances that surround violent deaths. As a result,
NVDRS has enabled States to plan and implement more effective violence
prevention programs informed by evidence and NVDRS data. The CDC Injury
Center currently funds 18 States to implement NVSRS. Safe States
Alliance supports the President's proposal \5\ to invest an additional
$20 million to expand NVDRS to all States.
For more than 30 years, the Prevent Block Grant has remained an
essential source of Federal support, providing States with the autonomy
to address their own unique health priorities and needs. In fiscal year
2011, more than 20 percent of the Prevent Block Grant was used by
States to support injury and violence prevention efforts and emergency
medical services. According to a recent survey conducted by Safe States
Alliance, 29 States reported receiving an average of $329,000 from the
Prevent Block Grant for injury and violence prevention efforts.\6\ The
Prevent Block Grant is a critical source of funding for SHD injury and
violence prevention programs, representing 9.4 percent of total funding
in 2011. The Prevent Block Grant was used to support two of the five
top injury areas addressed by State health departments in 2011--fall
injury and poisonings, including prescription drug overdoses. Safe
States Alliance supports restoration of the Prevent Block Grant at the
$100 million level.
The Safe States Alliance believes that all SHDs must have a
comprehensive injury and violence surveillance and prevention program,
similar to other public health programs for chronic disease and
infectious disease prevention. SHDs provide significant leadership to
reduce injuries and injury-related health care costs by: informing the
development of public policies through data and evaluation; designing,
implementing, and evaluating injury and violence prevention programs in
cooperation with other agencies and organizations; collaborating with
partners in health care and throughout the State; collecting and
analyzing injury and violence data to identify high-risk groups;
disseminating effective practices; and providing technical support and
training to injury prevention partners and local-level public health
professionals. The following are examples of how SHDs have utilized the
Core VIPP, NVDRS, and Prevent Block Grant to prevent injuries and
protected the lives of Americans:
--An estimated 3,143 lives have been saved since 1998 as a result of
CDC-funded smoke alarm installation and fire safety education
programs in high-risk communities. In funded States, more than
487,800 smoke alarms have been installed in approximately
250,000 homes. High-risk homes that were targeted by the
program included children ages five and younger and adults ages
65 and older.
--NVDRS data helped Oregon to develop suicide prevention programs for
high-risk groups of older adults. Almost 50 percent of men and
60 percent of women ages 65 years or older who died by suicide
were reported to have a depressed mood before death. However,
only a small proportion were receiving treatment for their
depression before they died. These findings suggest that
screening and treatment for depression may have saved lives. In
response to these findings, Oregon developed and is
implementing a State Older Adult Suicide Prevention Plan to
improve primary care integration with mental health services so
suicidal behavior and ideation is diagnosed and older adults
receive appropriate treatment.
--In response to the growing epidemic of prescription drug overdoses
in Ohio, the Ohio Core VIPP and the Ohio Injury Prevention
Partnership developed a multidisciplinary Prescription Drug
Abuse Action Group (PDAAG). Together, the group developed
consensus-based recommendations for policymakers. In May 2011,
the Ohio legislature passed a law containing many of the PDAAG
policy recommendations including: licensure of pain management
clinics; in-office dispensing limits; a Medicaid lock-in
program; and Prescription Drug Monitoring Program changes.
--The Massachusetts Department of Public Health Injury and Violence
Prevention Program (MDPH IVPP) worked in collaboration with
partners to provide support and technical assistance to schools
across the State to implement recent regulations on the
identification and management of concussion in school sports
during the 2011-2012 school year. To date, 262 school
districts, 17 charter schools, and 31 private schools have
confirmed that they have put in place policies complying with
MDPH regulations. This represents 78 percent of the schools and
school districts required to provide confirmation.
Injuries and violence also place a large financial burden on
mandatory spending programs. The U.S. population is aging rapidly:
currently, 35 million Americans are 65 years of age or older, and by
2020 this number is expected to reach 77 million. The majority of
adults over age 64 are covered under the Medicare Federal health
insurance program. In 2005, about 22 percent of community-dwelling
Medicare beneficiaries reported falling in the previous year.\7\ These
fall injuries accounted for 17 percent of emergency department visits
and 8 percent of hospital admissions. About one quarter of fall
injuries were fractures; 4 percent were hip fractures.\8\
According to the CDC, fall injuries are one of the 20 most
expensive medical conditions. After adjusting for inflation, the direct
medical costs of older adult fall injuries in 2011 totaled $36.4
billion.\9\ Medicare costs in the first year after a fall averaged
between $12,150 and $18,009. About 58 percent of direct medical costs
were for inpatient hospitalizations, with 16 percent for home health
care, 10 percent for medical office visits, 8 percent for hospital
outpatient visits, 6 percent for emergency room visits, and 1 percent
each for prescription drugs and dental visits. Of these costs, about 78
percent were reimbursed by Medicare.\8\ In 2011 dollars adjusted for
inflation, the annual cost of falls in 2020 is estimated to be $61.6
billion.\10\
Preventable injuries exact a heavy burden on Americans through
premature deaths, disabilities, pain and suffering, medical and
rehabilitation costs, disruption of quality of life for families, and
disruption of productivity for employers. Strengthening investments in
public health injury and violence prevention programs is a critical
step to keep Americans safe and productive for the 21st century. The
Safe States Alliance would like to thank the Committee for
consideration of this testimony.
---------------------------------------------------------------------------
\1\ National Research Council. Injury in America: A Continuing
Public Health Problem. Washington, DC: The National Academies Press,
1985.
\2\ Centers for Disease Control and Prevention, National Center for
Injury Prevention and Control. Web-based Injury Statistics Query and
Reporting System (WISQARS) [online] (2007) [accessed 2013 Feb 15].
Available from URL: http://www.cdc.gov/injury/wisqars.
\3\ Centers for Disease Control and Prevention, National Center for
Injury Prevention and Control. Web-based Injury Statistics Query and
Reporting System (WISQARS) [online] (2007) [accessed 2013 Feb 15].
Available from URL: http://www.cdc.gov/injury/wisqars
\4\ Centers for Disease Control and Prevention, National Center for
Injury Prevention and Control. [online][accessed 2013 Feb 15].
Available from URL: http://www.cdc.gov/injury/overview/
leading_cod.html.
\5\ NOW IS THE TIME: The President's plan to protect our children
and our communities by reducing gun violence. Washington, DC: White
House; 2013.
\6\ State of the States: 2011 Report. Atlanta, GA: Safe States
Alliance; 2013.
\7\ Stevens JA, Ballesteros MF, Mack KA, et al. Gender differences
in seeking care for falls in the aged Medicare population. Am J Prev
Med 2012;59-62.
\8\ Carroll NV, Slattum PW, Cox FM. The cost of falls among the
community-dwelling elderly. Journal of Managed Care Pharmacy
2005;11(4):307-16.
\9\ Stevens JA, Corso PS, Finkelstein EA, Miller TR. Cost of fatal
and nonfatal falls among older adults. Inj Prev 2006;12(5):290-95.
\10\ Englander F, Hodson TJ, Terregrossa RA. Economic dimensions of
slip and fall injuries. Journal of Forensic Science 1996;41(5):733-
46.trial. The Gerontologist 1994;34(1):16-23.
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______
Prepared Statement of the Scleroderma Foundation
Fiscal Year 2014 Appropriations Recommendations:
--Provide $32 billion for the National Institutes of Health in fiscal
year 2014, with corresponding increases to the National
Institute of Arthritis, Musculoskeletal and Skin Disease, the
National Heart, Lung and Blood Institute, the National
Institute of Allergy and Infectious Diseases, and the National
Institute of Minority Health and Health Disparities.
--The Committee recommendation for the National Institute of
Arthritis, Musculoskeletal and Skin Disease to provide
sustained investment in the Scleroderma research portfolio
which has a proven success in providing insight to the medical
and research community's understanding of the disease, as well
as other connective tissue diseases.
--The Committee's encouragement of the National Heart, Lung and Blood
Institute to expand research related to the pulmonary
complications of Scleroderma patients with Systemic sclerosis.
The Scleroderma Foundation:
My name is Robert Riggs, and I am the Chief Executive Officer. On
behalf of the Scleroderma Foundation and the estimated 300,000
Americans impacted by the disease, I appreciate the opportunity to
submit written testimony to the Senate Labor, Health and Human
Services, Education and Related Agencies Appropriations Subcommittee
regarding the Foundation's recommendations for fiscal year 2014
Appropriations for the Department of Health and Human Services.
Given the work of this subcommittee to accommodate the crippling
parameters of budget sequestration, long term deficit reduction and
recent cuts to non-defense, discretionary spending, I greatly respect
the Committee's continued commitment in support of investments in
medical research to enhance patient care and sustained funding support
for health programs that benefit patients with rare, costly and
difficult to treat diseases like Scleroderma.
Based in Danvers, Massachusetts, the Scleroderma Foundation is a
non-profit, national organization committed to providing support to the
thousands of patients and their families with the disease, promoting
public awareness and education for medical professionals and the public
about the condition, and supporting both Federal and private research
into finding the cause, treatment options and hopefully, a cure for
Scleroderma and other connective tissue diseases.
With a network of 23 chapters, more than 150 support groups and a
toll-free helpline for patients and their families, the Foundation
strives to provide high quality support through peer counseling,
physician referrals and educational information. The Foundation
supports nearly $1 million per year in research funding, providing seed
money for new and established Scleroderma investigators. Determined by
our Peer Research Review Committee of medical experts, this annual
investment, which is the largest single expenditure of the Foundation,
backs high quality and innovative research at universities, hospitals
and laboratories.
Scleroderma:
Scleroderma is a rare, progressive disease that involves the
hardening and tightening of the skin and connective tissues. Considered
both a rheumatic and connective tissue disorder, patients experience an
overproduction of collagen in the skin, tissue and underlying muscle
(localized Scleroderma). Severe cases of Scleroderma also impact
internal organs such as the heart, lungs, kidneys, intestines as well
as internal systems and blood vessels (Systemic Scleroderma).
Localized Scleroderma primarily impacts the skin, but can also
affect the associated tissue and muscles. In localized cases, thickened
areas of skin appear lighter or darker than surrounding skin and can
develop in patches, which is a type classified as ``morphea.''
Thickened skin can also appear in abnormally thick bands, or in a
``linear'' pattern on the arms, legs or face (termed``Scleroderma en
coup de sabre''). Most patients with the localized form of the disease
improve over time, while a darkened skin appearance and localized
muscle weakness, may remain permanently.
Systemic Scleroderma (SSc), which is experienced by approximately
one-third of Scleroderma patients, affects the internal organs and
systems, blood vessels, as well as the skin. In limited cutaneous
systemic sclerosis or CREST syndrome, both the internal and external
tightening occurs in strictly the face, hands, forearms, lower legs and
feet and patients experience CREST symptoms. CREST symptoms include:
--Cacinosis, calcium deposits form in the connective tissues of the
hands, face, abdominal area and arms.
--Raynaud's phenomenon, blood vessels in the hands, but also in the
feet contract due to stress, anxiety or cold temperature
appearing white or blue.
--Esophageal dysfunction, muscle weakness is experienced in the
esophagus resulting in patients experiencing trouble swallowing
or heartburn.
--Sclerodctyly, rigid fingers caused by thickened or tight skin,
cause patients difficulty in bending or straitening their
digits.
--Telegiectasia, the appearance of red spots in the hands and face.
Diffuse cutaneous scleroderma affects large areas of skin as wells
as the esophagus, gastrointestinal tract, lungs, kidneys, heart, and
joints and occurs with a sudden onset. Given the impact of the fibrous
collagen development and the long term impact within the associated
internal organs, individuals with the diffuse form of Scleroderma often
experience more serious long term patient prognoses and life
threatening complications. These patients are at risk of developing
pulmonary fibrosis or hypertension, heart issues such as
cardiomyopathy, arrhythmia or myocarditis, kidney disease, and
gastrointestinal issues in the esophagus and intestines. While
Scleroderma can affect anyone regardless of age, race, ethnicity or
gender, there is an increased incidence amongst women and minorities.
Typically women are three times more likely to experience Scleroderma
and African Americans, Native Americans and other minority patient
communities are more likely to be diagnosed with Systemic Scleroderma.
In most cases, the localized form of the disease is more common to
children and the average onset of the disease is between the ages of 25
and 55-years-old.
Given the different types, unpredictable and sometimes swift
progression of the disease, and its rarity, Scleroderma, like many
other autoimmune diseases is difficult for medical practitioners to
accurately diagnose. Diagnosis requires specialized tests and
consultation with rheumatologists, dermatologists and other specialists
depending on the disease progression. Furthermore, given the unique
experience of each patient's disease progression, treatments are
determined on a patient-by-patient basis depending on the experienced
symptoms.
As there is no cure for the Scleroderma, physicians are left
offering treatments which minimize the impact of the disease's
progression and alleviate the symptoms. Skin softening agents, anti-
inflammatory medication and exposure to heat, are used for typical skin
and tissue symptoms. For patients experiencing the internal effects of
the systemic class, physicians work to mitigate the long term impact of
the disease on internal organs through specialized and personalized
treatments. While researchers and medical experts have yet to determine
the cause of Scleroderma, preliminary findings point to a
susceptibility gene which indicates a predisposition likely tied to
familial history of rheumatic disease. Scleroderma patients however
rarely have relatives, either immediate or extended, who also have the
disease.
The Importance of Federal Investment in Scleroderma:
Despite this Committee's likely limited 302 (b) allocation and
efforts to reduce Federal debt and deficit spending, Federal funding
for science and medical research at the National Institutes of Health
has remained a bi-partisan, widely supported, critical national
investment. As the Committee faces increased pressure due to the
effects of budget sequestration, I urge your continued support of the
historical commitment this Committee has made to providing adequate
funding for the NIH.
In fiscal year 2012 and the current fiscal year, the National
Institutes of Health's estimated research portfolio for Scleroderma
remains $25 million and consists of grants funded predominantly at the
National Institute of Arthritis, Musculoskeletal and Skin Disease
(NIAMS) as well as through the National Heart, Lung and Blood
Institute, the National Institute of Allergy and Infectious Diseases,
and the National Institute of Minority Health and Health Disparities.
Like many successful research portfolios, the proven success of the NIH
supported Scleroderma portfolio, has provided translational knowledge
into connective tissue diseases along with the medical community's
increased understanding of Scleroderma.
The Committee's investment has provided hope to the millions of
patients with diseases like Scleroderma which are difficult to
diagnose, treat and currently without a cure. I know that within her
lifetime, Scleroderma patients like Cynthia Cervantes, a high school
junior that was afforded the opportunity to testify before this
committee 5 years ago, will benefit from tangible advancements
delivered through NIH findings.
As this Committee makes the difficult determination of
discretionary spending, I urge your continued support of important
health related research and patient care programs at NIH. Thank you
again for providing the opportunity to submit written testimony on
behalf of the Scleroderma Foundation.
______
Prepared Statement of the Sleep Research Society
Chairman Harkin and distinguished members of the subcommittee, as
you begin to craft the fiscal year 2014 (fiscal year 2014) Labor-HHS-
Education appropriation bill, the Sleep Research Society (SRS) is
pleased to submit this statement for the record asking you to provide
$32 billion for NIH, including a proportional increase for the National
Heart, Lung, and Blood Institute (NHLBI), $1 million in funding for
sleep disorders awareness and surveillance at the Centers for Disease
Control and Prevention (CDC), full support for the National Center on
Sleep Disorders Research (NCSDR), and implementation of the 2011 NIH
Sleep Disorders Research Plan. These actions will ensure increased
awareness of the importance of sleep and circadian rhythms and further
the advancements being made by sleep researchers to better understand
the relationship between sleep and health.
SLEEP RESEARCH SOCIETY
SRS was established in 1961 by a group of scientists who shared a
common goal to foster scientific investigations on all aspects of sleep
and sleep disorders. Since that time, SRS has grown into a professional
society comprising over 1,300 researchers nationwide. From promising
trainees to accomplished senior level investigators, sleep research has
expanded into areas such as psychology, neuroanatomy, pharmacology,
cardiology, immunology, metabolism, genomics, and healthy living. SRS
recognizes the importance of educating the public about the connection
between sleep and health outcomes. We promote training and education in
sleep research, public awareness, and evidence-based policy, in
addition to hosting forums for the exchange of scientific knowledge
pertaining to sleep and circadian rhythms.
According to an Institute of Medicine's report entitled, ``Sleep
Disorder and Sleep Deprivation: An Unmet Public Health Problem''
(2006), chronic sleep and circadian disturbances and disorders are a
very real and relevant issue in today's society as they affect 50-70
million Americans across all demographic groups. Sleep deprivation is a
major safety issue, particular in reference to drowsy driving, where it
is a factor in 20 percent of motor vehicle injuries. The high
prevalence of sleep disorders in every age group poses widespread
effects on public health, extending from poor academic performance in
children and adolescents to an increased risk of most major illnesses
including: obesity, diabetes, hypertension, cardiovascular disease,
stroke, depression, bipolar disorder, and substance abuse.
Sleep-disordered breathing, including obstructive sleep apnea, is a
detrimental condition affecting 15 percent of the population. Sleep
apnea results in excessive daytime somnolence, impaired cognition, an
increased frequency of road traffic accidents, hypertension, and
cardiovascular disease. Studies show that 85 percent of 725 troops
returning home from Afghanistan and Iraq had a sleep disorder and the
most common was obstructive sleep apnea (51 percent). Troops also
suffer from insomnia, disrupted sleep-wake rhythms, and fatigue related
to post-traumatic stress disorder and traumatic brain injury.
NATIONAL INSTITUTES OF HEALTH
Due to the fact that sleep affects, and is affected by most
behavioral and biological systems, many institutes and centers at NIH
utilize a portion of their funding to support sleep and circadian
research. The majority of sleep research is coordinated by NHLBI,
particularly the National Center on Sleep Disorders Research. An
appropriation of $32 billion for NIH is needed to facilitate the
continued growth and advancement in the sleep/circadian research
portfolio.
The reason NCSDR is housed at NHLBI is due to the important link
between sleep disorders and cardiovascular health. NCSDR supports
research, health education, and research training related to sleep-
disordered breathing and the fundamental function of sleep and
circadian rhythms. Furthermore, NCSDR coordinates sleep research across
NIH and with other Federal agencies and outside organizations.
NCSDR's coordinating role between institutes is made possible
through adequate funding. These research activities also have far
reaching effects, beginning with training grants targeted towards
undergraduate students and continuing to career development
opportunities attracting top research talent in doctoral programs.
Sequestration has the potential to disrupt the research training
pipeline designed to train future investigators who are pursuing
research in sleep disorders and circadian rhythms, by reducing the
amount of F, T, and K series awards.
It is also important to recognize that by increasing the Federal
commitment to sleep and circadian research, we can improve the health
of those brave Americans who have served in uniform and are suffering
from sleep disorders. Both obstructive sleep apnea and insomnia have a
high prevalence among active-duty U.S. Armed Forces and among Veterans.
Post-traumatic stress disorder and/or depression are highly prevalent
in returning Iraq and Afghanistan combat Veterans. Sleep disturbance is
a prominent symptom in these disorders. Traumatic brain injury is
increasingly common in modern combat, and sleep disruption in the
aftermath of TBI may have negative effects on long-term recovery of
normal brain function.
The Department of Veterans Affairs (VA) has shown a commitment to
collaborating with NIH on sleep research related to Post-Traumatic
Stress Disorder (PTSD), Traumatic Brain Injury (TBI), and Gulf War
Illness (GWI). This is highlighted in the fiscal year 2014 (fiscal year
2014) President's budget request detailing research initiatives in PTSD
and TBI. The ``Longitudinal Health Study of Gulf War Era Veterans'' is
one of the largest scientific research studies on chronic diseases and
multi-symptom illnesses, including Gulf War Illness. Researchers found
that prazosin, an inexpensive drug already used by millions of
Americans for hypertension and prostate problems, improves sleep and
reduces nightmares for veterans with PTSD. They continue to pursue
activities such as the difference between female and male veterans with
PTSD and possible intervention strategies to help veterans with TBI
return to daily activities. One study described in the Veteran's Health
Administration report State of VA Research 2012, found that 96 percent
of veterans with chronic multi-symptom illnesses experienced sleep
disordered breathing. By using continuous positive airway pressure
(CPAP) these veterans reported reductions in pain and fatigue and
improvements in cognitive function. It is important to fund NIH in
fiscal year 2014 so that we can continue these advancements in sleep
and circadian research.
CENTERS FOR DISEASE CONTROL AND PREVENTION
CDC gathers important data on sleep disorders through their
surveillance efforts under the Chronic Disease Prevention and Health
Promotion program. Most notably, CDC hosts a National Sleep Awareness
Roundtable (NSART) by promoting the importance of sleep through the
production of State fact sheets, updating the CDC website, and
disseminating information on sleep related topics. CDC also promotes
awareness of sleep disorders and the dangers associated with sleep
deprivation for the benefit of millions of Americans. Currently
population-based data on the prevalence of circadian disruption and its
relationship to disease risk is relatively limited. Please fund CDC at
$7.8 billion including an allocation of $1 million solely for sleep
awareness and surveillance activities within the Chronic Disease
Prevention and Health Promotion program so that progress can continue
in the areas of sleep disorders and disturbances, sleep awareness, and
education to the public community.
NIH SLEEP DISORDERS RESEARCH PLAN
NCSDR published the NIH Sleep Disorders Research Plan in November
of 2011 highlighting the implementation of pertinent sleep research
goals to enable further advancements in the realm of sleep and
circadian rhythm disorders. A Joint Task Force between the two leading
organizations representing the sleep medicine and research community,
Sleep Research Society (SRS) and American Academy of Sleep Medicine
(AASM), has identified research opportunities within the plan that will
have the highest impact on health, including:
--Reducing the societal impact of sleep deficiency and circadian
dysfunction on health
--Identifying key effective treatments for sleep and circadian
disorders across the lifespan
--Enhancing the training pipeline for future sleep and circadian
researchers
--Developing academic sleep and circadian research networks
Research activities and stakeholders addressed by the plan benefit
from the encompassing range of NIH research, training and outreach
programs. Over the past 2 years, steps have been taken to implement
portions of this research plan, but additional work needs to be done.
SRS encourages you to recommend that this research plan continue to be
implemented during fiscal year 2014.
Thank you for the opportunity to submit the views of the sleep
research community. Please do not hesitate to contact us should you
have any questions or require additional information.
______
Prepared Statement of the Society for Maternal-Fetal Medicine
On behalf of the Society for Maternal-Fetal Medicine (SMFM), I am
pleased to submit testimony in support of funding for the Eunice
Kennedy Shriver National Institute of Child Health and Human
Development (NICHD). We urge your support of at least $32 billion for
NIH, including $1.37 billion for NICHD in fiscal year 2014.
Established in 1977, SMFM is dedicated to improving maternal and
child outcomes and raising the standards of prevention, diagnosis, and
treatment of maternal and fetal disease. Maternal-fetal medicine
specialists, known as MFM specialists, perinatologists, or high-risk
pregnancy physicians, are highly trained obstetricians/gynecologists
with advanced expertise in obstetric, medical, and surgical
complications of pregnancy and their effects on the mother and fetus.
The complex problems faced by some mothers may lead to death as well as
short-term or life-long problems for both mothers and their babies.
Such complications be understood, treated, prevented and eventually
solved through research.
NICHD's mission is to ensure that every child is born healthy and
that women suffer no harmful effects from reproductive processes.
NICHD-supported basic, clinical, translational, and multidisciplinary
research studies address a myriad of issues in pregnancy including:
Preterm birth.--Delivery before 37 weeks' gestation is associated
with increased risks of death in the immediate newborn period as well
as in infancy, and can cause long-term complications. About 20 percent
of premature babies die within the first year of life, and although the
survival rate is improving, many preterm babies have life-long
disabilities including cerebral palsy, mental retardation, respiratory
problems, and hearing and vision impairment. Preterm birth costs the
U.S. $26 billion annually.
Stillbirth.--Defined as the death of a fetus at 20 or more weeks of
gestation, stillbirth complicated nearly 26,000 pregnancies in the
United States in 2005. Stillbirth is more than twice as common among
African Americans as Caucasian women. Other maternal risk factors for
stillbirth include advanced age, obesity, and co-existing medical
disorders such as diabetes or hypertension. The impact of environmental
exposures on stillbirth risk remains unknown. Of known stillbirth
causes, the most common are genetic abnormalities, alterations in the
number or structure of the chromosomes, maternal infection, hemorrhage,
and problems with the umbilical cord or placenta. However, the cause
remains unknown in about half of all stillbirths.
Hypertensive diseases in pregnancy.--High blood pressure
(hypertension) during pregnancy is the second leading cause of maternal
death in the United States, accounting for 15 percent of all deaths.
For the mother, it is associated with increased need for delivery
because of pregnancy complications, stroke, pulmonary or heart failure,
and death. The likelihood and severity of these complications increases
as the severity of the hypertension increases, and if preeclampsia
develops. Preeclampsia is characterized by high blood pressure and the
presence of protein in the urine. Its cause remains one of the greatest
mysteries in obstetrics and is a major cause of maternal, fetal, and
neonatal mortality worldwide.
Pregestational and gestational diabetes.--The hormonal changes of
pregnancy can seriously worsen preexisting diabetes and often bring
about a diabetic state (gestational diabetes) in predisposed women.
Whether diabetes mellitus existed before conception or gestational
diabetes develops during pregnancy, maternal glucose intolerance can
have significant medical consequences for both mother and baby. Poorly
controlled diabetes is associated with miscarriage, congenital
malformations, abnormal fetal growth, stillbirth, obstructed labor,
increased cesarean delivery, and neonatal complications. Up to 200,000
pregnancies are affected by gestational diabetes each year.
Great strides are being made through NICHD-supported research to
address the complex situations faced by mothers and their babies. One
of the most successful approaches for testing research questions is the
NICHD research networks which allow researchers from across the country
to collaborate and coordinate their work to change the way we think
about pregnancy complications and change medical practice across the
country. These networks deal with different aspects of pregnancythe
problem of preterm birth and its consequence.
The Stillbirth Collaborative Research Network (SCRN) was created to
study the extent and causes of stillbirth in the United States, and is
conducting a geographic population-based determination of the incidence
of stillbirth and is determining the causes of stillbirth using a
standardized protocol that includes clinical histories, autopsies and
pathologic examinations of the fetus and placenta as well as other
postmortem tests to illuminate genetic, maternal and environmental
influences. The information from this Network will benefit families who
have experienced a stillbirth, women who are pregnant or who are
considering pregnancy, and obstetric care providers. In addition, the
knowledge gained from this Network will support future research aimed
at improving preventive and therapeutic interventions and at
understanding the mechanisms that lead to fetal death.
Another important network is the Maternal-Fetal Medicine Units
Network (MFMU), established in 1986 to achieve a greater understanding
and pursue development of effective treatments for the prevention of
preterm births, low birth weight infants and medical complications
during pregnancy. The MFMU Network has identified new effective
therapies and will put an end to practices that are not useful. It is
the only national research infrastructure capable of performing the
much needed large trials that provide the evidence on which sound
medical practice is based. The MFMU Network is also the ideal vehicle
to collaborate with other NIH networks, as well as international
networks in order to improve global health. Since its inception, the
Network has made several exciting scientific advancements and has been
able to rapidly turn laboratory and clinical research into diagnostic
examinations and treatment procedures that directly benefit those
affected:
Following a series of studies in the 1970s and 1980s, an MFMU
Network clinical trial showed that progesterone treatment resulted in a
substantial reduction in the rate of preterm delivery among women who
had a previous preterm birth, reduced the risk of newborn
complications, and was effective in both African American and Non-
African American women. The MFMU Network conducted the largest, most
comprehensive trial to date to test whether magnesium sulfate given to
a woman in labor with a premature fetus (24 to 31 weeks out of 40)
would result in a reduction in cerebral palsy. In August 2008, NIH
announced that magnesium sulfate, when administered to women at risk of
imminently delivering preterm, reduces the risk of cerebral palsy in
surviving preterm infants by 45 percent.
The MFMU Network provided the first conclusive evidence that
treating pregnant women who have even the mildest form of gestational
diabetes can reduce the risk of common birth complications among
infants, as well as blood pressure disorders among mothers. These
findings will change clinical practice and lead to better outcomes for
both mothers and babies. Vigorous support of the MFMU Network is needed
so that therapies and preventive strategies that have significant
impact on the health of mothers and their babies will not be delayed.
Until new options are created for identifying those at risk and
developing cause specific interventions, preterm birth will remain one
of the most pressing problems in obstetrics.
The NuMoM2b network was developed to use current genomic and
proteomic techniques in combination with traditional markers for the
prediction of adverse pregnancy outcomes, including preterm birth,
preeclampsia, fetal growth restriction, and stillbirth in first
pregnancies, since adverse pregnancy outcomes are at increased risk for
complications in future pregnancies and over 40 percent of pregnancies
in the United States are first pregnancies. The NuMoM2b study of 10,000
women provides the infrastructure for additional multicenter study of
sleep disordered breathing in pregnancy. Epidemiologic studies have
shown that a woman's health status during pregnancy is associated with
her long-term health after pregnancy, suggesting that findings in
pregnancy may be a better indicator for determining a woman's future
health status than traditional risk factors. The NuMoM2b study could
serve as the basis for long-term studies to determine the relationships
between adverse pregnancy outcomes and long-term maternal health.
Opportunities for future study include collaborative work by NICHD,
NHLBI and NIDDK to more closely study these epidemiologic findings in
an effort to identify predictive markers during pregnancy for
subsequent heart disease and diabetes; develop tests to evaluate health
after pregnancy; and test interventions both during and after pregnancy
that may mitigate risk. Research is the cornerstone for improving our
understanding of the physiology and pathophysiology of pregnancy, the
interrelationship between the mother and fetus, the impact of medical
conditions on pregnancy and the impact of medical diseases and
pregnancy outcomes on the long term health of both mother and child.
With your support, researchers can continue to peel away the layers of
complex problems of pregnancy that have such devastating consequences.
______
Prepared Statement of the Society for Neuroscience
Mr. Chairman and members of the subcommittee, my name is Larry
Swanson, Ph.D. I am the Milo Don and Lucille Appleman Professor of
Biological Sciences at University of Southern California. Over the past
30 years my work has focused on the structure and organization of
neural structures involved in motivated and emotional behaviors, as
well as the development and wiring diagram of the nervous system more
generally. This statement is in support of increased funding for the
National Institutes of Health (NIH) for fiscal year 2014.
On behalf of the nearly 42,000 members of the Society for
Neuroscience (SfN), thank you for your past support of neuroscience
research at the NIH. SfN's mission is to advance the understanding of
the brain and the nervous system; provide professional development
activities, information and educational resources; promote public
information and general education; and inform legislators and other
policymakers.
This is an exciting time to be a part of the neuroscience field.
Advances in understanding brain development, imaging, genomics, circuit
function, computational neuroscience, neural engineering, and many
other disciplines are leading to discoveries that were impossible even
a few years ago. These will no doubt help us better understand and
treat traumatic brain injury, Alzheimer's disease, Parkinson's disease,
Down syndrome, schizophrenia, epilepsy, and post-traumatic stress
disorder to name just a few. All told, there are more than 1,000
debilitating neurological and psychiatric diseases that strike over 100
million Americans each year, costing an estimated $750 billion a year.
SfN is appreciative that President Obama recognizes brain science
as one of the great scientific challenges of our time. The recently
announced Brain Research through Application of Innovative
Neurotechnologies (BRAIN) Initiative would enable NIH and other Federal
agencies to develop initial tools and conduct further planning that
will help accelerate fundamental discoveries and improve the health and
quality of life for millions of Americans.
The field of neuroscience is poised to make revolutionary advances
thanks to decades of global investment and path-breaking research.
However, realizing this potential means today's critical seed funds
must be backed by sustained, robust investment in the scientific
enterprise in the coming decade. SfN is encouraged by the President's
request for a modest increase to the budget of NIH. However, flat
funding over the last decade has led to the loss of approximately 20
percent of NIH's purchasing power due to inflation, thus hampering the
pursuit of the knowledge needed to uncover the mysteries behind
biological function, causes of disease, and potential therapies.
Now is the time to take advantage of scientific momentum, to pave
the way for improved human health, to advance scientific discovery and
innovation, and to promote America's near-term and long-range economic
strength. That requires robust investments in NIH that reverse the tide
of stagnant and shrinking funding. These investments contribute to the
economic growth of local communities in every State as part of the
approximately 85 percent of the NIH budget that goes to funding
extramural research. In 2012 alone, NIH supported more than 402,000
jobs and $57.8 billion in economic output nationwide. Moreover,
adequate funding will help preserve and expand America's role as a
preeminent leader in biomedical research, supporting public and private
institutions and fostering activity in the pharmaceutical,
biotechnology, and medical device industries.
Seizing this moment can only happen if labs are able to pursue
promising leads and innovative ideas can move forward. A constricted
fiscal environment--compounded by sequestration--will stand in the way
of that progress. It's impossible to say what breakthroughs will go
undiscovered, but there is no doubt that this fiscal environment will
result in delayed discoveries, with potentially huge opportunity costs
for human health.
Last year, the Society stood with others in the research community
in requesting at least $32 billion for NIH. Today, the need is no less
as the funding situation is even more precarious, and the Society urges
Congress to reverse the current course and find ways to invest more in
biomedical research. We urge Congress to act before sequestration takes
full effect, further eroding the short and long-term capacity for
discovery. Let's work to put biomedical research on a trajectory of
sustained growth that recognizes its promise and opportunity as a tool
for economic growth and, more importantly, for advancing the health of
Americans.
BRAIN RESEARCH AND DISCOVERIES
NIH-funded basic (also known as fundamental) research continues to
be essential for discoveries that will inspire scientific pursuit and
medical progress for generations to come. Past NIH supported projects
have helped neuroscientists make tremendous strides in diagnosing and
treating neurological and psychiatric disorders. Given the long-term
path of basic science and industry's need for shorter-term return on
investment, private industry depends on federally-funded research to
create a strong foundation for applied research. More than ever, it is
important to support and fund research at levels from the most basic to
translational.
The following are just three of the many basic research success
stories in neuroscience emerging now thanks to strong historic
investment in NIH and other research agencies:
A New Model for Complex Brain Disease
A new development from basic science shows tremendous potential for
improving understanding of complex diseases such as Alzheimer's, which
affects 5.4 million Americans and costs the United States $200 billion
in direct costs annually.
Traditionally, human disease is modeled by identifying and studying
single gene mutations that run in families. Brain cells from mice
genetically engineered to express this mutated gene can be studied to
help illuminate the complex interactions that produce the disease.
Unfortunately for the ease of understanding these diseases, single
gene mutations are not the only way to develop most diseases. With
Alzheimer's disease, most cases are likely caused by mutations in many
different genes. Thus, current models of Alzheimer's likely paint an
incomplete picture of the disease.
New developments in stem cell technology are changing this picture.
Stem cells are special cells that have the potential to become any
other type of cell in the body. Due to advances in genetic engineering,
scientists can now trick almost any cell into becoming a stem cell.
This technique can be used to turn skin cells from patients with
idiopathic Alzheimer's disease into brain cells. These cells are
ostensibly identical to the cells in that person's brain, complete with
that person's unique genetic risk profile. Research with these cells
could potentially help identify subgroups of patients who will respond
differently to treatment in clinical trials.
For now, it is not clear whether the brain cells made from this
technique are completely identical to the 70-year-old neurons in the
brain of a patient with Alzheimer's disease. In addition, these cells
are currently prohibitively difficult to create, making them unlikely
to replace embryonic stem cells in other applications in the near
future. Continued research funding will allow scientists to begin
addressing these and other outstanding questions. This research
exemplifies the powerful potential to apply basic research well beyond
its original intent.
The ``Connectome''
Current knowledge about the intricate patterns connecting brain
cells (the ``connectome'') is extremely limited. Yet identifying these
patterns and understanding the fundamental wiring diagram or
architectural principles of brain circuitry is essential to
understanding how the brain functions when healthy and how it fails to
function when injured or diseased. Recent research suggests that some
brain disorders, like autism and schizophrenia, may result from errors
in the development of neural circuits. This research suggests a new
category of brain disorders called ``disconnection'' syndromes.
Advanced technologies, along with faster and more data-efficient
computers, now make it possible to trace the connections between
individual neurons in animal models providing us with greater insight
into brain dysfunction in mental health disorders and neurological
disease. Scientists have already used these technologies to examine
disease-related circuitry in rodent studies of Parkinson's disease.
Their findings helped explain how a new treatment called deep brain
stimulation works in people, and are being explored for treatments of
other diseases.
Genetics of Schizophrenia
Antipsychotic drugs and improved therapeutic techniques represent
great advances in the treatment of schizophrenia, but they do not help
everyone. Even when successful, they typically mitigate only psychotic
effects, leaving many severely disabled due to other symptoms.
One promising line of research deals with the genetics of
schizophrenia. In recent years, neuroscientists have found numerous
mutations linked to schizophrenia. However, no single mutation seems to
directly lead to schizophrenia, making a genetic test for the condition
unlikely for now. Rather, multiple, rare mutations seem to combine to
make someone susceptible. These genes seem to affect neural development
and neural plasticity--the ability of the brain to reshape its
connections as needed.
One of these genes is the Disrupted-In-Schizophrenia-1 (DISC1)
gene. DISC1 helps maintain signaling levels of a key chemical in the
brain called glutamate. Mice with a mutant form of DISC1 have reduced
glutamate signaling and behavioral abnormalities. There is evidence
that this deficit is the result of alterations during development which
nonetheless have lasting effects later in life.
Knowing the mechanisms by which individual genes may raise or lower
the risk of developing certain diseases is an important first step in
identifying the pathways involved in those diseases. Future research is
needed to probe the complex interactions of multiple genes within a
system. Once pathways are identified, they can provide direction for
development of new treatments.
THE FUTURE OF AMERICAN SCIENCE
As the subcommittee considers this year's funding levels, please
consider that significant advancements in the biomedical sciences often
come from young investigators. The current funding environment is
taking a toll on the energy and resilience of these young people.
America's scientific enterprise--and its global leadership--has been
built over generations. Without sustained investment, we will quickly
lose that leadership. The culture of entrepreneurship and curiosity-
driven research could be hindered for decades.
We live at a time of extraordinary opportunity in neuroscience. A
myriad of questions once impossible to consider are now within reach
because of new technologies, an ever-expanding knowledge base, and a
willingness to embrace many disciplines.
To take advantage of the opportunities in neuroscience we need an
NIH appropriation that allows for sustained reliable growth. That, in
turn, will lead to improved health for the American public and will
help maintain American leadership in science worldwide. Thank you for
this opportunity to testify.
______
Prepared Statement of the Society for Women's Health Research
The Society for Women's Health Research (SWHR) is pleased to have
the opportunity to submit the following testimony urging renewed
Federal investment in biomedical research, specifically women's health
and sex differences research, within the Department of Health and Human
Services (HHS). We request that for fiscal year 2014, Congress fund the
following agencies and the office of women's health programs at:
--Agency for Healthcare and Research Quality (AHRQ)--$430 million
--National Institutes of Health (NIH)--$32 billion
--Office of Research on Women's Health (ORWH)--$43.3 million
--HHS Office of Women's Health--$34.7 million
--CDC Office of Women's Health--$478,000
SWHR is the thought leader in research on biological differences in
disease and is dedicated to transforming women's health through
science, advocacy, and education. We believe that sustained funding of
a Federal research agenda that is inclusive of biomedical and women's
health research programs is absolutely essential if the U.S. is to meet
the needs of its citizens, especially women. SWHR realizes that the
Federal Government is focused on reducing our Federal deficit; however,
proper and sustained investment in health research will ultimately save
valuable dollars that are currently wasted on inappropriate treatments
and procedures.
Past investments in biomedical research propelled the U.S. into the
position of world leader in biomedical research. These investments
resulted in the mapping of the human genome and made it possible for
scientists to discover the biological and physiological differences
between women and men. The study of how these differences impact health
and medicine, known as sex based biology has been a fundamental part of
SWHR's mission since its inception. This research confirms that
biological sex plays an important role in disease susceptibility,
prevalence, time of onset and severity. Sex differences are evident in
cancer, obesity, heart disease, immune dysfunction, mental health
disorders, and many other diseases. Medications can have different
effects in woman and men, based on sex specific differences in
absorption, distribution, metabolism and elimination. When translated
into medical practice, this research will result in a personalized
approach to medicine, which will transform medical practice in the U.S.
National Institutes of Health.--In the past decade; NIH has faced a
20.8 percent decrease in buying power as a direct result of budgetary
cuts. More than 83 percent of NIH funding is spent in communities
across the Nation, creating jobs at more than 3,000 universities,
medical schools, teaching hospitals, and other research institutions in
every State. The number of new grants funded by NIH has dropped
steadily with declining budgets; and in 2012, the NIH Director, Francis
Collins, reported that grant funding was at an all-time low of 20
percent .
A shrinking number of available grants put American scientists out
of work. With a limited avenue to secure research funding, scientists
will have little choice than to pursue opportunities outside of
academic research, resulting in the loss of skilled bench scientists
and researchers to countries like China, who continue to heavily invest
in research. The U.S. desperately needs these researchers and scientist
to meet the needs and challenges of an aging U.S. population.
Innovation, which can take years to bear fruit, only occurs with
continual research investment. It is estimated that U.S. health
spending will account for nearly one-fifth of the U.S. economy by
2021.Given this timeframe, investments made today will just be coming
onto the market. Rather than implementing across the board budget cuts
that will limit future treatments, SWHR believes that Congress should
invest in specific areas of cost savings that will lower the overall
cost of healthcare, which is the largest driver of the Federal deficit.
Research into new and innovative strategies that are proven to prevent,
treat, or cure chronic conditions is perhaps the single most cost
effective strategy in reducing our Federal deficit.
SWHR recommends that Congress set, at a minimum, a budget of $32
billion for NIH for fiscal year 2014. Further we recommend that NIH,
with the funds provided, be mandated to report sex/gender differences
in all research findings, including those studying a single sex but
with explanation and justification. Additionally, NIH's mandate should
be expanded to include women in all phases of basic, clinical and
medical research. Current practice only mandates sufficient female
subjects only in Phase III research, and researchers often miss out on
the chance to look for variability by sex in the early phases of
research, safety and effectiveness is determined.
Office of Research on Women's Health.--ORWH is the focal point for
coordinating women's health and sex differences research at NIH, and
supports innovative interdisciplinary initiatives that focus on women's
health and sex differences research. ORWH works in collaboration with
NIH Institutes and Centers (IC's) to implement their programs and co-
fund research that incorporates sex and gender differences into their
ongoing studies. ORWH also promotes opportunities for and support of
recruitment, retention, re-entry and advancement of women in biomedical
careers.
--The Building Interdisciplinary Research Careers in Women's Health
(BIRCWH) is an innovative, trans-NIH career development program
that provides protected research time for junior faculty by
pairing them with senior investigators in an interdisciplinary
mentored environment. To date, over 490 scholars have been
trained in 39 centers, and 80 percent of those scholars have
been female. These centers have produced over 4,800
publications, and have been awarded 346 NIH research grants.
--Specialized Centers of Research on Sex and Gender Factors Affecting
Women's Health (SCOR) are designed to integrate basic and
clinical approaches to sex and gender research across
scientific disciplines. These programs have resulted in over
665 articles, reviews, abstracts, book chapters and other
publications.
--The Advancing Novel Science in Women's Health Research (ANSWHR)
program promotes innovative new concepts and interdisciplinary
research in women's health research and sex/gender differences.
ORWH partners with 23 NIH IC's, to broaden all areas of women's
health and sex differences research.
--Administrative Supplements for Research on Sex and Gender
Differences, is a new trans-NIH initiative to broaden the field
of sex and gender differences research. It allows ORWH to
leverage on-going grants by adding new dimension to the study.
To allow ORWH's programs and research grants to continue make their
impact on research and the public, Congress must direct that NIH
continue its support of ORWH and provide it with a $1 million dollar
budget increase, bringing its fiscal year 2014 total to $43.3 million.
Health and Human Services' Office of Women's Health.--The HHS OWH
is the Government's champion and focal point for women's health issues.
It works to redress inequities in research, health care services, and
education that have historically placed the health of women at risk.
Without OWH's actions, the task of translating research into practice
would be only more difficult and delayed. Considering the impact of
women's health programs from OWH on the public, we urge Congress to
provide an increase of $1 million for this office, a total of $34.7
million for fiscal year 2014.
Under HHS, the agencies currently with offices, advisors or
coordinators for women's health or women's health research include the
Food and Drug Administration (FDA), Centers for Disease Control and
Prevention (CDC), Agency for Healthcare Quality and Research (AHRQ),
Indian Health Service (INS), Substance Abuse and Mental Health Services
Administration (SAMHSA), Health Resources and Services Administration
(HRSA). These offices do important work, both individually and in
collaboration with other offices and Federal agencies to ensure that
women receive the appropriate care and treatments in a variety of
different areas. In a time of limited budgetary dollars, Congress
should invest in offices that promote working in collaboration with
other agencies, which shares much needed expertise while avoiding
unnecessary duplication. SWHR recommends that they are sufficiently
funded to ensure that these programs can continue and be strengthened
in fiscal year 2014.
In conclusion, Mr. Chairman, we thank you and this Committee for
its support for medical and health services research and its commitment
to the health of the Nation. We look forward to continuing to work with
you to build a healthier future for all Americans.
______
Prepared Statement of the Spina Bifida Association
BACKGROUND AND OVERVIEW
On behalf of the estimated 166,000 individuals and their families
who are affected by all forms of Spina Bifida--Spina Bifida Association
(SBA) appreciates the opportunity to submit public written testimony
for the record regarding fiscal year 2014 funding for the National
Spina Bifida Program housed at the National Center on Birth Defects and
Developmental Disabilities at the Centers for Disease Control and
Prevention (CDC) and other related Spina Bifida initiatives. SBA is a
national patient advocacy organization, working on behalf of people
with Spina Bifida and their families through education, advocacy,
research and service. SBA stands ready to work with Members of Congress
and other stakeholders to ensure our Nation mounts and sustains a
comprehensive effort to reduce and prevent suffering from Spina Bifida.
Spina Bifida, a neural tube defect (NTD), occurs when the spinal
cord fails to close properly within the first few weeks of pregnancy.
As the fetus grows--the spinal cord is exposed to the amniotic fluid,
which increasingly becomes toxic. It is believed that the exposure of
the spinal cord to the toxic amniotic fluid erodes the spine and
results in Spina Bifida. There are varying forms of Spina Bifida
occurring from mild--with little or no noticeable disability--to
severe--with limited movement and function. In addition, within each
different form of Spina Bifida the effects can vary widely.
Unfortunately, the most severe form of Spina Bifida occurs in 96
percent of children born with this birth defect.
The result of this NTD is that most people with it suffer from a
host of physical, psychological, and educational challenges--including
paralysis, developmental delay, numerous surgeries, and living with a
shunt, which helps to relieve cranial pressure associated with spinal
fluid that does not flow properly. As we have testified previously, the
good news is that after decades of poor prognoses and short life
expectancy, children with Spina Bifida are now living into adulthood
and increasingly into their advanced years. These gains in longevity
are due to breakthroughs in research, combined with improvements in
health care and treatment. However, with this extended life expectancy,
people with Spina Bifida now face new challenges, such as finding adult
health care providers, education, job training, independent living,
health care for secondary conditions, and aging concerns, among others.
Fortunately, with the creation of the National Spina Bifida Program in
2003, individuals and families affected by Spina Bifida now have a
program at the CDC that relates to their needs.
The daily consumption of 400 micrograms of folic acid by women of
childbearing age, prior to becoming pregnant and throughout the first
trimester of pregnancy, can help reduce the incidence of Spina Bifida,
by up to 70 percent. The CDC calculates that there are approximately
3,000 NTD births each year, of which an estimated 1,500 are Spina
Bifida, and, as such, with the aging of the Spina Bifida population and
a steady number of affected births annually, the Nation must take
additional steps to ensure that all individuals living with this
complex birth defect can live full, healthy, and productive lives.
COST OF SPINA BIFIDA
It is important to note that the lifetime costs associated with a
typical case of Spina Bifida--including medical care, special
education, therapy services, and loss of earnings--are as much as $1
million. The total societal cost of Spina Bifida is estimated to exceed
$750 million per year, with just the Social Security Administration
payments to individuals with Spina Bifida exceeding $82 million per
year. Moreover, tens of millions of dollars are spent on medical care
paid for by the Medicaid and Medicare programs. Efforts to reduce and
prevent suffering from Spina Bifida will help to not only save money,
but will also save--and improve--lives.
IMPROVING QUALITY-OF-LIFE THROUGH THE NATIONAL SPINA BIFIDA PROGRAM
Since 2001, SBA has worked with Members of Congress and staff at
the CDC to help improve our Nation's efforts to prevent Spina Bifida
and diminish suffering--and enhance quality-of-life--for those
currently living with this condition. With appropriate, affordable, and
high-quality medical, physical, and emotional care, most people born
with Spina Bifida will likely have a normal or near normal life
expectancy. The CDC's National Spina Bifida Program works to improve
quality-of-life for those living with Spina Bifida.
The National Spina Bifida Program helps provide information and
support to help ensure that individuals, families, and other
caregivers, such as health professionals, have the most up-to-date
information about effective interventions for the myriad primary and
secondary conditions associated with Spina Bifida. Among many other
activities, the program helps individuals with Spina Bifida and their
families learn how to treat and prevent secondary health problems, such
as bladder and bowel control difficulties, learning disabilities,
depression, latex allergies, obesity, skin breakdown, and social and
sexual issues. Children with Spina Bifida often have learning
disabilities and may have difficulty with paying attention and
executive function skills such as math. These problems can be treated
or prevented, but only if those affected by Spina Bifida--and their
caregivers--are properly educated to provide the skills leading to the
highest level of health and well-being possible. The National Spina
Bifida Program's secondary prevention activities represent a tangible
quality-of-life difference to the estimated 166,000 individuals living
with all forms of Spina Bifida, with the goal being living well with
Spina Bifida.
An important resource to better determine best clinical practices
and the most cost effective treatments for Spina Bifida is the National
Spina Bifida Patient Registry, now in its third year. A total of 17
sites throughout the Nation have collated over 3000 patient records
from which lifesaving data about treatment and care can be extracted.
SBA understands that the Congress and the Nation face unprecedented
budgetary challenges. However, the progress being made by the National
Spina Bifida Program must be sustained to ensure that people with Spina
Bifida--over the course of their lifespan--have the support and access
to quality care they need and deserve. To that end, SBA respectfully
urges the subcommittee to Congress allocate $5.812 million (level
funding) in fiscal year 2014 to the program, so it can continue its
current its current scope of work, increase its folic acid awareness/
Spina Bifida prevention efforts, further develop the National Spina
Bifida Patient Registry, and ensure that patients and their clinicians
receive the most up-to-date information--all efforts that help improve
quality of life and fulfill unmet needs for an estimated 166,000
Americans currently living with Spina Bifida.
SUSTAIN AND SEIZE SPINA BIFIDA RESEARCH OPPORTUNITIES
Our Nation has benefited immensely from our past Federal investment
in biomedical research at the NIH. SBA joins with other in the public
health and research community in advocating that NIH receive increased
funding in fiscal year 2014. This funding will support applied and
basic biomedical, psychosocial, educational, and rehabilitative
research to improve the understanding of the etiology, prevention, cure
and treatment of Spina Bifida and its related conditions. In addition,
SBA respectfully requests that the subcommittee include the following
language in the report accompanying the fiscal year 2014 LHHS
appropriations measure:
``The Committee encourages NIDDK, NICHD, and NINDS to study the
causes and care of the neurogenic bladder in order to improve
the quality of life of children and adults with Spina Bifida;
to support research to address issues related to the treatment
and management of Spina Bifida and associated secondary
conditions, such as hydrocephalus; and to invest in
understanding the myriad co-morbid conditions experienced by
children with Spina Bifida, including those associated with
both paralysis and developmental delay.''
CONCLUSION
Please know that SBA stands ready to work with the subcommittee and
other Members of Congress to advance policies and programs that will
reduce and prevent suffering from Spina Bifida. Again, we thank you for
the opportunity to present our views regarding fiscal year 2014 funding
for programs that will improve the quality-of-life for the estimated
166,000 Americans and their families living with all forms of Spina
Bifida.
______
Prepared Statement of the Transplant Roundtable
Dear Chairman Harkin and Ranking Member Moran: On behalf of the
Transplant Roundtable, a coalition of organ transplant patients,
professionals, and related organizations, the undersigned organizations
offer our strong support for Federal funding for the organ donation and
transplantation programs run by the Division of Transplantation (DoT)
within the Health Resources and Services Administration (HRSA).
We applaud you for your many years of unwavering commitment to
these programs and ask again for your assistance. While we recognize
the serious challenges regarding the Federal budget, it is critical
that the Federal Government retain its strong commitment to these
programs. As such, we ask that you preserve, at a minimum, a level
budget of $24 million for these DoT programs from fiscal year 2013 to
fiscal year 2014.
The DoT serves a unique and irreplaceable function and if
discretionary funds are available, an increase in funding (i.e., $3
million) for fiscal year 2014 would make a huge difference and
ultimately save lives. DoT provides oversight and funding for the
Nation's organ procurement, allocation, and transplantation system
through the Organ Procurement and Transplantation Network (OPTN). It
coordinates all organ and tissue donation activities and funds donation
research. Further, through the National Living Donor Assistance Center
(NLDAC), it provides funding for travel and subsistence expenses of
living donors whose low income may otherwise prohibit them from
donating. These and other programs funded through DoT are very worthy
of additional Federal investment as they produce a major return on this
investment, year after year.
DoT reports that each day, an average of 79 people receive organ
transplants; however, an average of 18 people die each day waiting for
transplants that do not occur because of the shortage of donated
organs. As of February 2013, the national patient waiting list for
organ transplants contained more than 127,000 listings. The total
number of transplants from January to November of 2012 was
approximately 26,000, with nearly 13,000 donors during that same time
period.
Congressional, agency and private sector support has resulted in
transplantation that has saved and enhanced the lives of more than
600,000 people in the United States, helped to greatly reduce the
number of deaths on the waiting list, and generated substantial savings
to the Medicare program through foregone need for dialysis. As a
country, we do very well in facilitating and providing these life-
saving services, but we need sustained Federal commitment and resources
to continue this mission.
Your leadership has been exemplary over many years on
transplantation and organ donation activities. On behalf of transplant
patients and their families, we ask that you again champion Federal
organ donation and transplantation programs run through HRSA.
Sincerely,
Alliance for Paired Donation, American Association
of Kidney Patients, American Association
for the Study of Liver Diseases, American
Society of Nephrology, American Society of
Pediatric Nephrology, American Society of
Transplantation, American Society of
Transplant Surgeons, American Transplant
Foundation, Association of Organ
Procurement Organizations, Dialysis Patient
Citizens, Eye Bank Association of America,
NATCO, The Organization for Transplant
Professionals, National Kidney Foundation,
PKD (Polycystic Kidney Disease) Foundation,
Renal Physicians Association, Texas
Transplant Society, Transplant Recipients
International Organization, United Network
for Organ Sharing.
______
Prepared Statement of the Trevor Project
Dear Chairman Harkin and Representative Moran: My name is Abbe
Land, and I am the Executive Director and CEO. The Trevor Project
appreciates the opportunity to submit a statement on the critical and
timely issue of funding for children's mental health initiatives. We
strongly encourage you to support our Nation's youth by funding these
vital programs:
--Increase and continue to fund SAMHSA Mental Health Programs: $1.101
billion
--Continue to fund and reauthorize the Garrett Lee Smith Memorial
Act, and increase funding by $2 million to each program ($44
million total, SAMHSA)
--Now is the Time Programs (Departments of Justice, Education, HHS):
--Authorize $150 million for the Comprehensive School Safety
Program
--Authorize $80 million to help create safer and healthier school
climates
--Fully fund Project Aware--$155 million (Department of Education,
HHS)
--Continue to support and fund the Elementary and Secondary School
Counseling Program (Department of Education): $52.3 million
--Continue to fund and reauthorize the Runaway and Homeless Youth Act
and increase funding to $165 million (Department of Housing and
Urban Development)
--Continue to fund the Prevention and Public Health Fund (Departments
of Health and Human Services, SAMHSA):
--Behavioral Health Screening and Integration with Primary Health--
$70 million
--Public Health Workforce--$45 million
--Restore and augment funding to the Centers for Disease Control and
Prevention, Division of Adolescent and School Health: $50
million
The Trevor Project is the leading national organization providing
crisis intervention and suicide prevention services to lesbian, gay,
bisexual, transgender and questioning (LGBTQ) young people under 24.
The Trevor Project saves young lives through its free and confidential
lifeline, a secure instant messaging service providing live help, in-
school workshops, educational materials, online resources and advocacy.
Recognized by the President as a Model of Pride, The Trevor Project has
been an innovator in suicide prevention since 1998.
The recent tragic and senseless loss of life in Newtown,
Connecticut, has highlighted the need for action to address the serious
mental health concerns that continue to face our Nation. President
Obama has brought further attention to this critical issue through his
``Now is the Time'' Presidential plan,\1\ which emphasizes the
importance of both mental health care and safe schools as part of an
effort to protect our youth and communities. We thank the Committee for
taking a thorough look at the funding mechanisms that support our
Nation's youth mental health programs, and we hope that this letter
will identify the critical programs that exist to protect our most
vulnerable youth.
While Congress has sought to increase access to appropriate mental
health care in recent years through the passage of laws such as the
Mental Health Parity and Addiction Equity Act and the Affordable Care
Act, there unfortunately remain substantial barriers to accessing
mental health care, particularly for young people.
According to the National Survey of Children's Health, up to 20
percent of young people have a diagnosable mental illness, but only 60
percent of those in need of mental health care receive the treatment
they require.\2\ In fact, half of all individuals with mental illness
experience onset of the disorder by age 14, but do not seek treatment,
on average, until the age of 24.\3\ For youth, the consequences of
untreated mental illness vary and include increased suicide risk,
school failure, involvement in the criminal justice system,
unemployment, substance abuse, and homelessness. Among stigmatized
populations such as LGBTQ young people, these negative outcomes can be
exacerbated by prejudice, fear, and hate experienced in homes, schools,
and communities.
Suicidality is closely associated with mental illness; more than 90
percent of those who die by suicide have a diagnosable mental
disorder.\4\ Therefore suicide prevention is an essential component of
a comprehensive mental health system. Among young people ages 10 to 24,
suicide is the second leading cause of death.\5\ This issue is
especially critical for LGBTQ youth populations. Research has shown
that LGB youth are 4 times more likely to attempt suicide than their
straight peers, and questioning youth are 3 times more likely.\6\
Nearly half of young transgender people have seriously thought about
taking their lives and one quarter report having made a suicide
attempt.\7\ While these statistics are tragic, it is important to
remember that together we can prevent suicide through education and
awareness.
The Trevor Project recommends the following appropriations to
improve access to effective mental health care and reduce suicide risk
for young people:
MENTAL HEALTH BLOCK GRANTS (SAMHSA)
SAMHSA operates the only Federal programs dedicated to improving
systems of care for youth in juvenile justice and special education
programs. Through SAMHSA's block grant programs, States provide
necessary services to youth and adults facing mental illness and
addiction who would not otherwise be able to seek help and get
treatment.
--Congress should allocate a minimum of $1.101 billion in total
fiscal year 2013 funding for mental health programs to sustain
and improve necessary initiatives.
garrett lee smith memorial act (s. 116) (samhsa)
Suicide prevention programs for young people are a life-saving and
effective means to address the daunting issue of youth suicide. We can
help avoid tragedy by appropriately funding programs that focus on
extreme harming behaviors and mental illness in young people. Garrett
Lee Smith funding currently supports suicide prevention programs in 40
States, 38 tribes, and 85 colleges.
--Ensure the Suicide Prevention Resource Center that houses the
National Best Practices Registry and also the evidence base in
suicide prevention continues to be funded at $5 million
annually.
--Increase authorization for State and tribal programs to $32 million
annually, an increase of $2 million.
--Increase authorization for higher education programs to $7 million
annually, an increase of $2 million.
NOW IS THE TIME PROGRAMS
(departments of justice, education, health and human services)
The President's Now is the Time plan is a profound affirmation of
this Administration's commitment to addressing school safety and youth
mental health. These programs must be adequately funded in order to
fulfill the promise of making our schools and communities safe for all
young people.
--Authorize $150 million for the Comprehensive School Safety Program.
This valuable program will help ensure that every student feels
supported and safe, by helping school districts hire 1,000 new
school mental health professionals and resource officers.
--Authorize $80 million to help schools create safer and healthier
school climates through comprehensive emergency management, and
new monitoring systems.
--Fully fund Project AWARE--$155 million
--Support innovative, State-based strategies for improving mental
health training and responsiveness to mental health
emergencies;
--Put more trained teachers and mental health professionals on the
ground;
--Help school districts make sure students get the referrals they
need;
--Underscore the importance of prevention by offering students
mental health services for trauma or anxiety, conflict
resolution programs, and other school-based violence
prevention strategies.
elementary and secondary school counseling program
(department of education)
The Department of Education plays a vital role in ensuring that at-
risk youth communities have consistent access to mental health services
in schools. Congress should support these services through allocation
of funding to new mental health in schools initiatives, as well as
through a recommitment to programs that have already been successful.
--The Elementary and Secondary School Counseling Program is the only
Federal program that helps school districts put mental health
professionals in schools. Congress should continue to fund this
critical program at current levels ($55.3 million).
runaway & homeless youth act (rhya)
(department of housing and urban development)
An estimated 40 percent of all homeless youth are LGBTQ-identified,
often because they are thrown out of their homes or face family
rejection. Nearly 2/3 of these young people are likely to attempt
suicide at least once. Funding for the RHYA has not significantly
increased since 2008, despite a growing population desperately in need
of the services provided by this Act. Through the RHYA, Congress
ensures funding for community outreach programs, transitional housing
and support services, and counseling and reunification guidance for
families to be reconnected.
--Congress should fully fund the Runaway and Homeless Youth Act,
providing $165 million to help keep our vulnerable youth safe
and healthy.
prevention and public health fund
(department of health and human services)
Preventative care results in better health outcomes, and it is
cheaper and more cost effective than downstream alternatives. This is
especially true for issues relating to mental health and suicide
prevention. The Prevention and Public Health Fund represents an
opportunity to recognize mental health as a public health issue, and to
take meaningful action to give States the support services and
infrastructure necessary to treat it as such.
--Congress should continue to fund Behavioral Health Screening and
Integration with Primary Health ($70 million), which in part
goes towards expanding suicide prevention activities and
screening for substance use disorders, and towards assisting
communities with integrating primary care services into
publicly-funded community mental health and behavioral health
settings.
--Congress should continue to provide funding for the Public Health
Workforce ($45 million) to help communities train public health
providers who will advance preventive medicine and improve the
access to and quality of health services in medically
underserved communities.
division of adolescent and school health funding (cdc)
The Centers for Disease Control and Prevention (CDC)'s Division of
Adolescent and School Health (DASH) provides crucial support services
nationally. DASH helps administer the Youth Risk Behavior Surveillance
System (YRBSS)--the only instrument utilized at the Federal level to
assess the health and education needs of middle and secondary school
students in the United States. This survey collects important
information about the health and well-being of our Nation's youth, data
that helps advocates and policymakers to make better-informed and more
effective decisions on behalf young people.
--Congress should fully restore funding to DASH for $50 million so
that important data continue to be collected about at-risk
youth and essential student health programs can continue.
CONCLUSION
We thank the Committee for taking the time to fully assess our
Nation's mental health care system, and we appreciate the opportunity
to provide a written statement. We strongly support efforts to increase
access to mental health care for young people, and we urge the
Committee to fully support these critical programs.
If you should have any questions regarding this statement, please
contact myself or Elliot Kennedy, Government Affairs Counsel, by email
at [email protected].
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\1\ The White House, Now is the Time: The President's plan to
protect our children and communities by reducing gun violence (2013).
\2\ 2007 National Survey of Children's Health, Data Resource Center
for Child & Adolescent Health, Child and Adolescent Health Measurement
Initiative, http://www.nschdata.org (last visited May 2009).
\3\ Ronald C. Kessler et al., Lifetime Prevalence and Age-of-Onset
Distributions of DSM-IV Disorders in the National Co-morbidity Survey
Replication (NCSR), 62 General Psychiatry 593 (2005); and Philip S.
Wang et al., Failure and Delay in Initial Treatment Contact After First
Onset of Mental Disorders in the National Co-morbidity Survey
Replication (NCS-R), 62 General Psychiatry 603 (2005).
\4\ Suicide in the U.S.: Statistics and Prevention, National
Institute of Mental Health, available at http://www.nimh.nih.gov/
health/publications/suicide-in-the-us-statistics-and-prevention/
index.shtml#Moscicki-Epi (last visited Mar. 14, 2013).
\5\ Centers for Disease Control and Prevention, National Center for
Injury Prevention and Control, Web-Based Injury Statistics Query and
Reporting System (WISQARS), available at http://www.cdc.gov/ncipc/
wisqars (last visited Mar. 14, 2013).
\6\ Laura Kann et al., Sexual Identity Sex of Sexual Contacts, and
Health-Risk Behaviors Among Students in Grades 9-12--Youth Risk
Behavior Surveillance, Selected Sites, United States, 2001-2009,
60(SS07) MMWR 1 (2011), available at http://www.cdc.gov/mmwr/preview/
mmwrhtml/ss6007a1.htm (last visited Mar. 14, 2013).
\7\ Arnold H. Grossman & Anthony R. D'Augelli, Transgender Youth
and Life-Threatening Behaviors, 37(5) Suicide Life Threat Behav. 527
(2007).
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______
Prepared Statement of the Tri-Council for Nursing
The Tri-Council for Nursing, comprising the American Association of
Colleges of Nursing, the American Nurses Association, the American
Organization of Nurse Executives, and the National League for Nursing,
respectfully requests $251.099 million for the Nursing Workforce
Development programs authorized under Title VIII of the Public Health
Service Act (42 U.S.C. 296 et seq.) in fiscal year 2014.
The Tri-Council is a long-standing nursing alliance focused on
leadership and excellence in the nursing profession. As the Nation
restructures its health care system through expanding access to some
30+ million new patients, decreasing cost, and improving quality, an
investment must be made to strengthen the nursing workforce. The U.S.
Bureau of Labor Statistics (BLS) projects that the profession of
registered nurse (RN) will grow 26 percent for the 10-year timeframe
between 2010 and 2020, compared to the average growth rate of 14
percent for all occupations.
Notwithstanding our slowed economic recovery, the BLS projects
there will be 2 million health care jobs created between 2010 and 2020.
This workforce growth is expected to continue as demand for nursing
care accelerates in traditional acute care settings and in non-hospital
settings such as home care and long-term care. The BLS projections
further explain the need for 495,500 replacements in the nursing
workforce, bringing the total number of job openings for nurses due to
growth and replacements to 1.2 million by 2020.
As our Nation regains its economic foothold, the Tri-Council urges
the subcommittee to focus on the larger context of building the nursing
capacity needed to meet the rising health care demands of our Nation's
population. Starting on January 1, 2011, Baby Boomers began turning 65
at the rate of 10,000 a day. With them comes the amplified call for
health care and services of an aging population, which will swell the
pressure on the health care system, especially when coupled with near
epidemic growth in childhood obesity, diabetes, and other chronic
diseases experienced among the country's populations.
Moreover, the acute nurse faculty shortage is one significant
reason why schools of nursing across the country turn away thousands of
qualified applications each year. The demand for nurses and the faculty
who educate them is a serious impediment to improving the Nation's
health care needs. Nurses continue to be the largest group of health
care providers whose services are directly linked to quality and cost-
effectiveness. The Tri-Council is grateful to the subcommittee for your
past commitment to Title VIII funding and respectfully asks that you
continue to make the long-term investment that will build the nursing
workforce necessary to deliver the quality, affordable care envisioned
in health reform.
A Proven Solution: Nursing Workforce Development Programs
The Nursing Workforce Development programs, authorized under Title
VIII of the Public Health Service Act, have helped build the supply and
distribution of qualified nurses to meet our Nation's health care needs
since 1964. Over these past 49 years, the original programs, newly
added and expanded programs have addressed all aspects of supporting
the workforce--education, practice, retention, and recruitment. They
have bolstered nursing education at all levels--from entry-level
preparation through graduate study--and have provided support for
institutions that educate nurses for practice in rural and medically
underserved communities. A description of the Title VIII programs and
their impact are included below.
--Advanced Nursing Education (ANE) Programs (Sec. 811) fund a number
of grant activities--including several traineeships--that aim
to increase the size and quality of the advanced nursing
workforce. Supporting the preparation of RNs in master's and
doctoral nursing programs, the ANE grants help prepare our
Nation's nurse practitioners, clinical nurse specialists, nurse
midwives, nurse anesthetists, nurse educators, nurse
administrators, nurses in executive practice, public health
nurses, and other nursing specialists requiring advanced
nursing education. In fiscal year 2011, these grants supported
the education of over 7,800 students--exceeding the program's
performance target by 25 percent. The ANE-funded traineeships
comprise the Advanced Education Nursing Traineeships (AENT) and
the Nurse Anesthetist Traineeships (NAT). Where AENTs aim to
increase the number of advanced education nurses trained to
practice as primary care nurse practitioners or nurse midwives,
the NATs seek to address the misdistribution of primary care
nurse anesthetists in the United States. Performance data for
fiscal year 2011 showed that grantees of the AENT and NAT
programs provided direct financial support to 11,242 nursing
and nurse anesthesia students, exceeding the performance target
of 2,910.
--Nursing Workforce Diversity (NWD) Grants (Sec. 821) prepare
students from disadvantaged backgrounds to become nurses,
producing a more diverse nursing workforce. This outcome will
help meet the increasing need for culturally aligned, quality
health care for the Nation's rapidly diversifying population
and help close the gap in health disparities. This program
awards grants and contract opportunities to schools of nursing
for a variety of clinical training facilities to address
nursing educational needs for not only disadvantaged students
but also racial and ethnic minorities underrepresented in the
nursing profession. Also, the reauthorization of the NWD
program under the Patient Protection and Affordable Care Act
added the authority to support advanced nursing education. The
persistent underrepresentation of racial/ethnic minority groups
prompts an initiative targeting efforts to diversify the ranks
of nursing faculty. In fiscal year 2011, the program
performance data showed that NWD grantees provided scholarships
to 1,270 students, exceeding the performance target by 72
percent.
--Nurse Education, Practice, Quality and Retention (NEPQR) Grants
(Sec. 831, and Sec. 831 A) help schools of nursing, academic
health centers, nurse managed health centers, State and local
governments to strengthen nursing education programs thereby
increasing the size and quality of the nursing workforce. The
purposes of the NEPQR are broad and flexible, allowing the
program to address emerging needs in nursing workforce
development. For example, projects to develop and disseminate
collaborative practice models that incorporate the full range
of health care workers in team-based care are of certain
interest. NEPQR supports infrastructure development to enhance
the coordination and capacity building of interprofessional
practice and education among health professions across the
United States and particularly in medically underserved areas.
For other interests, a number of grant activities have been
funded to support several legislative purposes such as
expanding the size of academic programs that are able to confer
a baccalaureate degree of science in nursing (BSN); recruiting
and educating individuals as qualified personal and home care
aides in occupational shortage and/or high demand areas;
training qualified nursing assistants and home health aides to
meet the growing health care needs of the aging population;
and/or supporting nurse managed health clinics that serve as
primary care access points in areas where primary care
providers are in short supply. A total of 5,127 BSN students
were supported during fiscal year 2011, exceeding the program's
performance target by 5 percent. Grantees funded to support the
personal and home health aide purpose of the NEPQR program
trained a total of 1,366 students during fiscal year 2011; and
grantees supporting the nursing assistant and home health aide
NEPQR purpose supported a total of 1,810 students.
--NURSE Corps (formerly known as the Nursing Education Loan Repayment
and Scholarship Program) (Sec. 846, Title VIII, PHSA) provides
monies to students that pay up to 85 percent of a student's
loan in return for at least 3 years of service in a designated
health shortage area or in an accredited school of nursing. The
NURSE Corps Loan Repayment Program (LRP) is a financial
incentive program under which individual RNs and advanced
practice RNs (APRNs) enter into a contractual agreement with
the Federal Government to work full-time in a health care
facility with a critical shortage of nurses, in return for
repayment of qualifying nursing educational loans. The Patient
Protection and Affordable Care Act of 2010 amended the NURSE
Corps LRP to extend loan repayment to nurse faculty. These
awards assist in the recruitment and retention of nurse faculty
at accredited schools of nursing by decreasing economic
barriers that may be associated with pursuing a career in
academic nursing. The NURSE Corps Scholarship Program (SP)
offers scholarships to individuals attending accredited schools
of nursing in exchange for a service commitment payback in
health care facilities with a critical shortage of nurses. The
NURSE Corps SP award reduces the financial barrier to nursing
education for all levels of professional nursing students, thus
increasing the pipeline. A first funding preference is given to
qualified applicants who have zero expected family contribution
and who are enrolled full-time in an undergraduate nursing
program or a Master's nurse practitioners program.
--Nurse Faculty Loan Program (NFLP) (Sec. 846 A, Title VIII, PHSA)
provides up to 85 percent of loan cancellation if the student
agrees to a 4-year teaching commitment in a school of nursing.
In fiscal year 2011, NFLP grantees provided loans to a total of
2,246 students pursuing faculty preparation at the master's and
doctoral level, exceeding the program's performance target of
1,510 by 49 percent. NFLP performance data showed that, of the
students supported in fiscal year 2011, over 400 graduated at
the end of academic year, exceeding the performance target of
275 by 45 percent.
--Comprehensive Geriatric Education Program (CGEP) Grants (Sec. 855,
Title VIII, PHSA) provide support to nursing students
specializing in care for the elderly. These grants may be used
to educate RNs who will provide direct care to older Americans,
develop and disseminate geriatric curriculum, prepare faculty
members, and provide continuing education. Through continuing
education activities, fiscal year 2011 grantees of the CGEP
program reached over 8,200 trainees and delivered over 1,700
hours of instruction. Performance data showed that CE offerings
primarily focused on topics such as geriatric education for
direct care providers, palliative and end-of-life care, and
health care and older adults.
Our Nation is faced with a growing health care crisis that must be
addressed on many fronts. Nurses are an important part of the solution
to the crisis of cost, burden of disease, and access to quality care.
To meet this challenge, funding of proven Federal programs such as
Title VIII will help ease the demand for RNs. The Tri-Council
respectfully requests your support of $251.099 million for the Title
VIII Nursing Workforce Development Programs in fiscal year 2014.
______
Prepared Statement of the Trust for America's Health
Trust for America's Health (TFAH), a nonprofit, nonpartisan
organization dedicated to saving lives by protecting the health of
every community and working to make disease prevention a national
priority, would like to thank you for this opportunity to submit
written testimony regarding fiscal year 2014 appropriations. We would
also like to give special thanks to Senator Harkin for decades of
tireless work to support for prevention and wellness programs in both
his roles as Chairman of the Senate Health, Education, Labor, and
Pensions (HELP) Committee but this subcommittee as well.
As you craft the fiscal year 2014 Labor, Health & Human Services,
Education and Related Agencies (LHHS) appropriations bill, I urge you
to include adequate funding for prevention and preparedness programs at
the Centers for Disease Control and Prevention (CDC) and other public
health agencies.
As a Nation, we face daunting economic and fiscal challenges. To a
large degree, these are driven by high health care costs. Indeed, we
spend roughly 75 percent of our Nation's annual $2.5 trillion in health
care spending on preventable chronic diseases. Despite this expenditure
of scarce resources, we are managing sickness, not preventing it--and
are faced with the grim prospect that, if we remain on our current
trajectory, our children may be the first in U.S. history to live
shorter, less healthy lives than their parents.
Fortunately, the vast majority of our chronic disease burden is
preventable through proven approaches that focus primarily on increased
physical activity, improved nutrition, and reduced tobacco use. A
recent TFAH report estimates that if average body mass index were
reduced by five percent, in just 5 years the United States would save
$30 billion and prevent millions of cases of diabetes, heart disease,
stroke, arthritis, and cancer. The Prevention and Public Health Fund
and National Prevention Strategy provide an important framework on
which we can build efforts to put greater emphasis on prevention, turn
our ``sick care'' system into one that provides true health care, and
help Americans lead longer, more productive, healthier lives.
The future health of the Nation depends on supporting both
investments within the health sector that promote prevention inside and
outside the clinic, as well as partnerships between health and crucial
partners in education, transportation, housing, and other sectors, and
we must maintain our investment in Federal wellness and prevention
programs.
We also cannot forget the critical role that CDC and State and
local health departments play in protecting us from communicable
diseases, bioterrorist threats and natural disasters. That core
capacity has been diminished in recent years because of Federal budget
cuts and the economic downturn, resulting in a 20 percent loss (48,000
jobs) in the State and local health department workforce.
Meeting these twin challenges of preventing disease and protecting
the American people from natural and man-made threats can only occur
with continued support for key programs at the CDC--ranging from the
Prevention and Public Health Fund and Community Transformation Grant
program to preparedness programs and other funding streams that assure
that all health departments have the foundational capabilities to
respond to all health threats.
CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC)
Cuts to the CDC, our Nation's lead public health agency and a
critical partner in our long-term efforts to prevent disease and
illness have already been stark. Compared to fiscal year 2010, with
sequestration the CDC will have seen its budget authority cut by 18
percent over just 3 years. These cuts have played a big part in the
aforementioned workforce cuts. Overall, scarce resources means CDC will
be forced to make extremely tough, sometimes life and death choices.
THE PREVENTION AND PUBLIC HEALTH FUND
Significant cuts to the Fund contained in the Middle Class Tax
Relief and Job Creation Act of 2012 will be compounded with additional
cuts under sequestration. To date, the Fund has invested $2.25 billion
since fiscal year 2010 to support State and local public health efforts
to transform and revitalize communities, build epidemiology and
laboratory capacity to track and respond to disease outbreaks, train
the Nation's public health and health workforce, prevent the spread of
HIV/AIDS, expand access to vaccines, reduce tobacco use, and help
control the obesity epidemic.
Unfortunately, we learned last month that of $949 million remaining
under the Prevention Fund for fiscal year 2013, a significant portion
of funding will be diverted to support outreach and education efforts
for the federally-administered Heath Insurance Marketplace. TFAH
supports insurance enrollment as a critical opportunity to ensure
people gain access to life-saving and life-extending services,
including essential preventive services. However, it is just as
important that people have access to the support they need outside the
doctor's office to become and remain healthy to potentially avoid those
life-threatening health situations. We are concerned that further cuts
to the Prevention Fund will compromise our ability to make progress on
cost containment, public health modernization and wellness promotion.
As a result, we urge this subcommittee and Congress to fully
allocate fiscal year 2014 Prevention and Public Health dollars towards
evidence-based programs, include the Community Transformation Grant
program (see below), aimed at promoting primary prevention and public
heath promotion.
COMMUNITY TRANSFORMATION GRANTS
The Community Transformation Grants (CTG) program, administered by
the CDC, is one of our best prevention opportunities. CTG grants
empower States and localities to address the drivers of chronic
disease. Most importantly, it requires communities to create
partnerships to achieve sustainable solutions to help make the healthy
choice the easy choice. CTGs must deploy strategies that are evidence-
based and all grantees have rigorous health outcomes improvement goals
that must be met. It is important to note, that as required by law, at
least 20 percent of CTG funds must be targeted to reach rural or
frontier communities. Even with current levels of funding, only about 4
in 10 Americans are reached by the CTG program. We recommend the
Committee allocate $300 million from the Prevention Fund for the CTG
program in fiscal year 2014, which will allow the program to reach
millions more Americans.
NATIONAL CENTER FOR CHRONIC DISEASE PREVENTION AND HEALTH PROMOTION
Over the past several years, the Chronic Disease Center at CDC has
made progress in an effort to move away from the traditional
categorical approach to funding chronic disease prevention and towards
more coordinated, cross-cutting strategies. In 2011, CDC awarded
coordinated chronic disease State grants to all 50 States to begin to
build a core capacity to address common risk factors and implement
comprehensive strategies for promoting health. While funding is no
longer available for those grants, the Chronic Disease Center at CDC
recently released a new funding opportunity announcement (FOA) aimed at
integrating prevention approaches for addressing heart disease,
obesity, school health, and diabetes.
Diminishing Federal dollars for CDC has meant that not all 50
States receive funding under our existing categorical grants.
Coordinated approaches like this can help to ensure that we fund all
State health departments to achieve cross-cutting, core chronic disease
prevention capacity. Past proposals from President Obama and others
have included plans to consolidate budget lines for the Center, another
approach that could further aid coordination of national and State
chronic disease prevention. However, consolidation would need to be
thoughtfully designed so it meaningfully improves our chances of
improving health, not just serve as a budget gimmick that will further
harm our ability to address our growing chronic disease burden.
NATIONAL CENTER FOR ENVIRONMENTAL HEALTH (NCEH)
Critical programs conducted at the CDC National Center for
Environmental Health support our chronic disease prevention and public
health preparedness efforts. However, it remains one of the most
critically underfunded parts of CDC. Since fiscal year 2009, NCEH
funding has been cut approximately 25 percent. In fiscal year 2012, for
example, the CDC Healthy Homes and Lead Poisoning Prevention program
was nearly eliminated, putting 600,000 children at risk of the terrible
effects of lead poisoning. We recommended that you fund NCEH at
$146.151 million in fiscal year 2014 to help begin to rebuild the lead
control program and ensure that no additional ground is lost in
addressing the environmental causes of disease.
PUBLIC HEALTH EMERGENCY PREPAREDNESS
The State & Local Preparedness & Response Capability program at the
CDC supports health departments in preparing for, and responding to,
all types of disasters, including bioterror attacks, natural disasters,
and infectious disease outbreaks. The centerpiece is the Public Health
Emergency Preparedness (PHEP) Cooperative Agreements. PHEP grants
support 15 core capabilities, including biosurveillance, community
resilience, countermeasures and mitigation, incident management,
information management, and surge management. These capabilities are
tiered so that grantees can identify areas of greatest need and target
their resources accordingly.
TFAH recommends providing $657.4 million for the CDC State and
Local Preparedness line for fiscal year 2014 in line with the
authorized amount included in the recently-passed reauthorization of
the Pandemic and All-Hazards Preparedness Act (PAHPA). Cuts mean the
loss of highly-trained frontline public health preparedness workers,
reduction of the number of high-level laboratories, defunding academic
and research centers, and eroding training, exercise, planning,
epidemiology, and surveillance capacity. Preparedness is dependent on
maintaining a well-trained public health workforce, and inconsistent
funding results in serious gaps in our ability to respond to new health
threats. It is unreasonable to expect our first responders to continue
to be able to confront more threats with fewer resources.
CONCLUSION
Investing in disease prevention is the most effective, common-sense
way to improve health and help address our long-term deficit. Hundreds
of billions of dollars are spent each year via Medicare, Medicaid, and
other Federal health care programs to pay for health care services once
patients develop an acute illness, injury, or chronic disease and
present for treatment in our health care system. A sustained and
sufficient level of investment in public health and prevention efforts
is essential to reduce high rates of disease and improve health in the
United States.
Should you have any questions regarding this written testimony,
please do not hesitate to contact: Rebecca Salay, Director of
Government Relations, Trust for America's Health, 1730 M Street, NW,
Suite 900, Washington, DC 20036, email [email protected].
______
Prepared Statement of the United Nations Foundation
Chairman Tom Harkin, Ranking Member Jerry Moran, and members of the
subcommittee, the American Red Cross and the United Nations Foundation
appreciate the opportunity to submit testimony in support of measles
control activities of the U.S. Centers for Disease Control and
Prevention (CDC). The American Red Cross and the United Nations
Foundation recognize the leadership that Congress has shown in funding
CDC for these essential activities. We sincerely hope that Congress
will continue to support the CDC during this critical period in measles
control.
In 2001, CDC--along with the American Red Cross, the United Nations
Foundation, the World Health Organization, and UNICEF--founded the
Measles Initiative, a partnership committed to reducing measles deaths
globally. In 2012, the Initiative expanded to include rubella control
and adopted a new name, the Measles & Rubella Initiative (the
Initiative). The Initiative aims to reach elimination goals for
measles, rubella and congenital rubella syndrome. The current UN goal
is to reduce global measles deaths by 95 percent by 2015 compared to
2000 estimates, and three of six WHO regions have set rubella control
or elimination targets. The Initiative is committed to reaching these
goals by providing technical and financial support to governments and
communities worldwide.
The Measles & Rubella Initiative has achieved ``spectacular'' \1\
results by supporting the vaccination of more than 1.1 billion
children. Largely due to the Measles & Rubella Initiative, global
measles mortality dropped 71 percent, from an estimated 548,000 deaths
in 2000 to 158,000 in 2011 (the latest year for which data is
available). During this same period, measles deaths in Africa fell by
84 percent. About 430 children still die from measles each day from a
virus that can be countered with an effective, inexpensive vaccine; and
each year more than 110,000 children are born with congenital rubella
syndrome. In May 2012, the 194 member States of the World Health
Assembly resolved to endorse the Global Vaccine Action Plan, which
affirmed the elimination of measles and rubella by 2020 in at least
five of six WHO regions as global goals.
ESTIMATED NUMBER OF GLOBAL MEASLES DEATHS, 2000-2010
[In thousands]
------------------------------------------------------------------------
Number
------------------------------------------------------------------------
2000........................................................ 535.3
2001........................................................ 528.8
2002........................................................ 373.8
2003........................................................ 484.3
2004........................................................ 331.4
2005........................................................ 384.8
2006........................................................ 227.7
2007........................................................ 130.1
2008........................................................ 137.5
2009........................................................ 177.9
2010........................................................ 139.3
------------------------------------------------------------------------
Working closely with host governments, the Measles & Rubella
Initiative has been the main international supporter of mass measles
immunization campaigns since 2001. The Initiative mobilized more than
$1 billion and provided technical support in more than 80 developing
countries on vaccination campaigns, surveillance and improving routine
immunization services. From 2000 to 2011, an estimated 10 million
measles deaths were averted as a result of these accelerated measles
control activities at a donor cost of less than $200/death averted,
making measles mortality reduction one of the most cost-effective
public health interventions.
Nearly all the measles vaccination campaigns have been able to
reach more than 90 percent of their target populations. Countries
recognize the opportunity that measles vaccination campaigns provide in
accessing mothers and young children, and ``integrating'' the campaigns
with other life-saving health interventions has become the norm. In
addition to measles vaccine, vitamin A (crucial for preventing
blindness in under nourished children), de-worming medicine (reduces
malnutrition), and insecticide-treated bed nets (ITNs) for malaria
prevention are distributed during vaccination campaigns. The scale of
these distributions is immense. The Initiative and its partners have
supported the distribution of more than 245 million doses of vitamin A,
113 million doses of de-worming medicine, 41 million insecticide-
treated bed nets, and 137 million doses of polio vaccine. Doses of oral
polio vaccines are frequently distributed during measles campaigns in
polio endemic and high risk countries. The delivery of polio vaccines
in conjunction with measles vaccines in these campaigns strengthens the
reach of elimination and eradication efforts of these diseases. The
delivery of multiple child health interventions during a single
campaign is far less expensive than delivering the interventions
separately, and this strategy increases the potential positive impact
on children's health from a single campaign.
The extraordinary reduction in global measles deaths contributed
nearly 25 percent of the progress to date toward Millennium Development
Goal #4 (reducing under-five child mortality). However, large outbreaks
in several African, European and Asian countries in 2011 and 2012 have
put the 2015 measles elimination goals at risk. These outbreaks
highlight the fragility of the last decade's progress. If mass
immunization campaigns are not continued, measles deaths will increase
rapidly with more than half a million deaths estimated for 2013 alone.
To achieve the 2015 goal and avoid a resurgence of measles the
following actions are required:
--Fully implementing activities, both campaigns and strengthening
routine measles coverage, in India since it is the greatest
contributor to the global burden of measles.
--Sustaining the gains in reduced measles deaths, especially in
Africa, by strengthening immunization programs to ensure that
more than 90 percent of infants are vaccinated against measles
through routine health services before their first birthday as
well as conducting timely, high quality mass immunization
campaigns.
--Accelerating the introduction of a second dose of measles
containing vaccine into the routine immunization program of
eligible countries with support from the GAVI Alliance.
--Securing sufficient funding for measles and rubella-control
activities both globally and nationally. The Measles & Rubella
Initiative faces a funding shortfall of an estimated U.S. $171
million for 2013-2015. Implementation of timely measles
campaigns is increasingly dependent upon countries funding
these activities locally. The decrease in donor funds available
at a global level to support measles elimination activities
makes increased political commitment and country ownership of
the activities critical for achieving and sustaining the goal
of reducing measles mortality by 95 percent.
If these challenges are not addressed, the remarkable gains made
since 2000 will be lost and a major resurgence in measles deaths will
occur.
By controlling measles and rubella cases in other countries, U.S.
children are also being protected from the diseases. Measles can cause
severe complications and death. A resurgence of measles occurred in the
United States between 1989 and 1991, with more than 55,000 cases
reported. This resurgence was particularly severe, accounting for more
than 11,000 hospitalizations and 123 deaths. Since then, measles
control measures in the United States have been strengthened and
endemic transmission of measles cases have been eliminated here since
2000. However, importations of measles cases into this country continue
to occur each year, particularly from Europe. The costs of these cases
and outbreaks are substantial, both in terms of the costs to public
health departments and in terms of productivity losses among people
with measles and parents of sick children. Studies show that a single
case of measles in the United States can cost between $100,000 and
$200,000 to control. The U.S. had 222 measles cases in 2011, the
highest in 15 years and Canada experienced a large outbreak of over 800
cases.
The Role of CDC in Global Measles Mortality Reduction
Since fiscal year 2001 and until 2013, Congress has provided
between $43.6 and $49.3 million annually in funding to CDC for global
measles control activities. These funds were used toward the purchase
of measles vaccine for use in large-scale measles vaccination campaigns
in more than 80 countries in Africa and Asia, and for the provision of
technical support to Ministries of Health. Specifically, this technical
support includes:
--Planning, monitoring, and evaluating large-scale measles
vaccination campaigns;
--Conducting epidemiological investigations and laboratory
surveillance of measles outbreaks; and
--Conducting operations research to guide cost-effective and high
quality measles control programs.
In addition, CDC epidemiologists and public health specialists have
worked closely with WHO, UNICEF, the United Nations Foundation, and the
American Red Cross to strengthen measles control programs at global and
regional levels, and will continue to work with these and other
partners in implementing and strengthening rubella control programs.
While it is not possible to precisely quantify the impact of CDC's
financial and technical support to the Measles & Rubella Initiative,
there is no doubt that CDC's support--made possible by the funding
appropriated by Congress--was essential in helping achieve the sharp
reduction in measles deaths in just eleven years.
The American Red Cross and the United Nations Foundation would like
to acknowledge the leadership and work provided by CDC and recognize
that CDC brings much more to the table than just financial resources.
The Measles & Rubella Initiative is fortunate in having a partner that
provides critical personnel and technical support for vaccination
campaigns and in response to disease outbreaks. CDC personnel have
routinely demonstrated their ability to work well with other
organizations and provide solutions to complex problems that help
critical work get done faster and more efficiently.
In fiscal year 2011 and fiscal year 2012, Congress appropriated
approximately $49 million each year to fund CDC for global measles
control activities. This amount represents a $2.7 million decrease from
2010. The American Red Cross and the United Nations Foundation
respectfully request a return to fiscal year 2010 funding levels ($52
million) for fiscal year 2014 for CDC's measles and rubella control
activities to protect the investment of the last decade, and prevent a
global resurgence of measles and a loss of progress toward Millennium
Development Goal #4.
Your commitment has brought us unprecedented victories in reducing
measles mortality around the world. In addition, your continued support
for this initiative helps prevent children from suffering from this
preventable disease both abroad and in the United States.
Thank you for the opportunity to submit testimony.
---------------------------------------------------------------------------
\1\ Unpublished data from Measles & Rubella, Annual Report 2012,
page 11 (April 2013).
---------------------------------------------------------------------------
______
Prepared Statement of the the US Hereditary Angioedema Association
SUMMARY OF FISCAL YEAR 2014 RECOMMENDATIONS
_______________________________________________________________________
1) $32 billion for the National Institutes of Health (NIH) at an
increase of $1 billion over fiscal year 2012.
2) Continued Focus on Hereditary Angioedema Research and Education
at NIH.
3) Funding to create and support the Centers For Disease Control
and Prevention's (CDC) to increase awareness efforts for Hereditary
Angioedema at CDC.
_______________________________________________________________________
Chairman Harkin, thank you for the opportunity to present the views
of the US Hereditary Angioedema Association (US HAEA) regarding the
importance of Hereditary Angioedema (HAE) public awareness activities
and research.
The US HAEA is a non-profit patient advocacy organization founded
in 1999 to help those suffering with HAE and their families to live
healthy lives. The Association's goals were, and remain, to provide
patient support, advance HAE research and find a cure. The US HAEA
provides patient services that include referrals to HAE knowledgeable
health care providers, disease information and peer-to-peer support. US
HAEA also provides research funding to scientific investigators to
increase the HAE knowledge base and maintains an HAE patient registry
to support ground-breaking research efforts. Additionally, US HAEA
provides disease information materials and hosts forums to educate
patients and their families, health care providers, and the general
public on HAE.
HAE is a rare and potentially life-threatening inherited disease
with symptoms of severe, recurring, debilitating attacks of edema
(swelling). HAE patients have a defect in the gene that controls a
blood protein called C1-inhibitor, so it is also more specifically
referred to as C1-inhibitor deficiency. This genetic defect results in
production of either inadequate or nonfunctioning C1-inhibitor protein.
Because the defective C1-inhibitor does not adequately perform its
regulatory function, a biochemical imbalance can occur and produce an
unwanted peptide--called bradykinin--that induces the capillaries to
release fluids into surrounding tissues, thereby causing swelling.
People with HAE experience attacks of severe swelling that affect
various body parts including the hands, feet, face, airway (throat) and
intestinal wall. Swelling of the throat is the most life-threatening
aspect of HAE, because the airway can close and cause death by
suffocation. Studies reveal that more than 50 percent of patients will
experience at least one throat attack in their lifetime.
HAE swelling is disfiguring, extremely painful and debilitating.
Attacks of abdominal swelling involve severe and excruciating pain,
vomiting, and diarrhea. Because abdominal attacks mimic a surgical
emergency, approximately one third of patients with undiagnosed HAE
undergo unnecessary surgery. Untreated, an average HAE attack lasts
between 24 and 72 hours, but some attacks may last longer and be
accompanied by prolonged fatigue.
The majority of HAE patients experience their first attack during
childhood or adolescence. Most attacks occur spontaneously with no
apparent reason, but anxiety, stress, minor trauma, medical, surgical,
and dental procedures, and illnesses such as colds and flu have been
cited as common triggers. ACE Inhibitors (a blood pressure control
medication) and estrogen-derived medications (birth control pills and
hormone replacement drugs) have also been shown to exacerbate HAE
attacks.
HAE's genetic defect can be passed on in families. A child has a 50
percent chance of inheriting the disease from a parent with HAE.
However, the absence of family history does not rule out the HAE
diagnosis; scientists report that as many as 25 percent of HAE cases
today result from patients who had a spontaneous mutation of the C1-
inhibitor gene at conception. These patients can also pass the
defective gene to their offspring. Worldwide, it is estimated that this
condition affects between 1 in 10,000 and 1 in 30,000 people.
PUBLIC AWARENESS AT THE CENTERS FOR DISEASE CONTROL AND PREVENTION
HAE patients often suffer for many years and may be subject to
unnecessary medical procedures and surgery prior to receiving an
accurate diagnosis. Raising awareness about HAE among healthcare
providers and the general public will help reduce delays in diagnosis
and limit the amount of time that patients must spend without treatment
for a condition that could, at any moment, end their lives.
Once diagnosed, many individuals are able to piece together a
family history of mysterious deaths and episodes of swelling that
previously had no name. In some families, over many years, this
condition has come to be accepted as something that must simply be
endured. Increased public awareness is crucial so that these patients
understand that HAE often requires emergency treatment and disabling
attacks no longer need to be passively accepted. While HAE cannot yet
be cured, intelligent use of available treatments can help patients
lead a productive life.
In order to prevent deaths, eliminate unnecessary surgeries, and
improve patients' quality of life, it is critical that CDC pursue
programs to educate the public and medical professionals about HAE in
fiscal year 2014.
RESEARCH THROUGH THE NATIONAL INSTITUTES OF HEALTH
In years past, HAE research was conducted at the National
Institutes of Health (NIH) through the National Institute of Allergy
and Infectious Diseases, the National Institute of Neurological
Disorders and Stroke, the National Heart Lung and Blood Institute, the
National Institute of Child Health and Human Development, National
Center for Research Resources, and the National Institute on Diabetes
and Digestive and Kidney Diseases. However, NIH has not engaged in HAE-
specific research since 2009, and there is no longer any Federal
research as it relates to HAE.
As it may provide greater opportunities for HAE research, we
applaud the recent establishment of the National Center for Advancing
Translational Sciences (NCATS) at NIH. Housing translational research
activities at a single Center at NIH will allow these programs to
achieve new levels of success. Initiatives like the Cures Acceleration
Network are critical to overhauling the translational research process
and overcoming the challenges that plague treatment development. In
addition, new efforts like taking the lead on drug repurposing have the
potential to speed access to new treatments, particularly to patients
who struggle with rare or neglected diseases. As a rare disease
community, HAE patients may also benefit from the Therapeutics for Rare
and Neglected Diseases (TRND) program, housed at NCATS, as well
coordination with the Office of Rare Diseases Research (ORDR). We ask
that you support NCATS and provide adequate resources for the Center in
fiscal year 2014.
In order to reinvigorate HAE research at NIH, it is vital that NIH
receive increased support in fiscal year 2014. US HAEA recommends an
overall funding level of $32 billion for NIH in fiscal year 2014 and
the inclusion of recommendations emphasizing the importance of HAE
research to learn more about this rare disease and new pathways for
appropriate treatment.
Thank you for the opportunity to present the views of the HAE
community.
______
Prepared Statement of the United States Senate
Hon. Tom Harkin,
Chairman, Senate Appropriations Subcommittee on Labor,
Health and Human Services and Education,
131 Dirksen Senate Office Building,
Washington, DC 20510
Hon. Jerry Moran,
Ranking Member, Senate Appropriations Subcommittee on Labor,
Health and Human Services and Education,
156 Dirksen Senate Office Building,
Washington, DC 20510
Dear Chairman Harkin and Ranking Member Moran: We are writing to
thank you for your support for the Office of Museum Services (OMS) at
the Institute of Museum and Library Services (IMLS) and to urge the
Subcommittee to support robust funding for OMS in the Fiscal Year 2014
Labor, Health and Human Services and Education Appropriations bill. The
Office of Museum Services is currently authorized to receive $38.6
million annually.
The demand for museum services is greater than ever. At a time when
school resources are strained and many families cannot afford to travel
or make ends meet, museums are working overtime to fill the gaps--
providing more than 18 million instructional hours to schoolchildren,
bringing art and cultural heritage, dynamic exhibitions and living
specimens into local communities, partnering with other nonprofits to
encourage national service and volunteerism, and offering free or
reduced admission. Museums are part of a robust nonprofit community
working to address a wide range of our Nation's greatest challenges,
from conducting medical research to hosting supervised visits for the
family court system, and from creating energy efficient public
buildings to collecting food for needy families.
Unfortunately, museums are struggling significantly in these
difficult economic times. They are being forced to cut back on hours,
educational programming, community services and jobs. And according to
the 2005 Heritage Health Index, at least 190 million artifacts are at
risk, suffering from light damage and harmful and insecure storage
conditions. Many museums also rely heavily on philanthropic donations
to keep admission rates low and provide new exhibitions for their
communities.
The Institute of Museum and Library Services (IMLS) is the primary
Federal agency that serves the Nation's more than 17,500 museums, and
its Office of Museum Services' funding has decreased in recent years.
Although the agency has been successful in creating and supporting
advancements in areas such as technology, lifelong community learning
and conservation and preservation efforts, only a small fraction of the
Nation's museums are currently being reached, and many highly rated
grant applications go unfunded each year.
In 2010, the Institute of Museum and Library Services was
unanimously reauthorized by both the House and Senate. The agency is
highly accountable, and its competitive, peer-reviewed grants serve
every State. The reauthorization contained several provisions to
further support museums, particularly at the State level, but much of
the recently authorized activities cannot be accomplished without
sustained funding.
We urge the subcommittee to support robust funding for the IMLS
Office of Museum Services for Fiscal Year 2014 to support the important
work museums are doing in our communities. This vital funding will aid
museums of all types--aquariums, arboretums, archaeological museums,
art museums, botanical gardens, children's museums, culturally specific
museums, historic sites, history museums, maritime museums, military
museums, natural history museums, nature centers, planetariums, science
and technology centers, zoological parks, and other types of museums--
and enable them to continue serving our schools and communities and
preserving our cultural heritage for future generations.
Again, we appreciate the subcommittee's prior support for OMS and
request this investment to strengthen and sustain the work of our
Nation's museums.
Sincerely,
Kirsten E. Gillibrand, Jack Reed, Patrick J. Leahy,
Frank R. Lautenberg, Christopher A. Coons,
Angus S. King Jr., Richard Blumenthal,
Richard J. Durbin, Jeanne Shaheen, Tim
Johnson, Martin Heinrich, Charles E.
Schumer, Carl Levin, Sherrod Brown, Joe
Manchin III, Bernard Sanders, Ron Wyden,
Mazie K. Hirono, Christopher Murphy, Debbie
Stabenow, Benjamin L. Cardin, Sheldon
Whitehouse, Brian Schatz, Elizabeth
Warren.--United States Senators
______
Prepared Statement of the United Tribes Technical College
For 44 years, with the most basic of funding, United Tribes
Technical College (UTTC) has provided postsecondary career and
technical education, job training and family services to some of the
most impoverished, high risk Indian students from throughout the
Nation. With such challenges, some colleges might despair, but we have
consistently had excellent retention and placement rates and are a
fully accredited institution. We are proud to be equipping our students
to take part in the new energy economy in North Dakota and proud to be
part of building a strong middle class in Indian Country by training
the next generation of law enforcement officers, educators, medical
technicians and ``Indianpreneurs.'' We are governed by the five tribes
located wholly or in part in North Dakota. We are not part of the North
Dakota State college system and do not have a tax base or State-
appropriated funds on which to rely. Section 117 Carl Perkins Act funds
represent a significant portion of our operating budget and provide for
our core instructional programs. The request of the UTTC Board for
fiscal year 2014 is:
--$10 million for base funding authorized under Section 117 of the
Carl Perkins Act for the Tribally Controlled Postsecondary
Career and Technical Institutions program (20 U.S.C. Section
2327). This is $1.8 million above the fiscal year 2012 level.
These funds are awarded competitively and are distributed via
formula.
--$30 million as requested by the American Indian Higher Education
Consortium for Title III-A (Section 316) of the Higher
Education Act (Strengthening Institutions program). This is $5
million above the fiscal year 2012 enacted level.
--Maintain Pell Grants at the $5,635 maximum award level.
A Few Things of Note About United Tribes Technical College. We have:
--Renewed unrestricted accreditation from the North Central
Association of Colleges and Schools, for July 2011 through
2021, with authority to offer all of our full programs on-line.
We have 26 Associate degree programs, 20 Certificate and three
Bachelor degree programs (Criminal Justice; Elementary
Education; Business Administration).
--Services including a Child Development Center, family literacy
program, wellness center, area transportation, K-8 elementary
school, tutoring, counseling, family and single student
housing, and campus security.
--A projected return on Federal investment of 20-1 (2005 study).
--A semester retention rate of 85 percent and a graduate placement
rate of 77 percent. Over 45 percent of our graduates move on to
four-year or advanced degree institutions.
--Students from 75 tribes; 85 percent of our undergraduate students
receive Pell Grants.
--An unduplicated count of undergraduate degree-seeking students and
continuing education students of 1200 and a workforce of 360.
--A dual-enrollment program targeting junior and senior high school
students, providing them an introduction to college life and
offering high school and college credits.
--A critical role in the regional economy. Our presence brings at
least $34 million annually to the economy of the Bismarck
region A North Dakota State University study reports in that
the five tribal colleges in North Dakota made a direct and
secondary economic contribution to the State of $181,933,000 in
2012.
Positioning our Students for Success.--UTTC is dedicated to
providing American Indians with postsecondary and technical education
in a culturally diverse environment that will provide self-
determination and economic development for all tribal nations. This
means offering a rich cultural education and family support system
which emphasizes enhancement of tribal peoples and nations, while
simultaneously evaluating and updating our curricula to reflect the
current job market. The ramifications of the North Dakota Bakken oil
boom are seen throughout the State. We saw the need for more certified
welders in relation to the oil boom and so expanded our certified
welding program. We are now able to train students for good paying, in-
demand welding jobs. Similarly, our online medical transcription
program was designed to meet the growing need for certified medical
support staff. Other courses reflect new emphasis on energy auditing
and Geographic Information System Technology.
We are in the midst of opening up a distance learning center in
Rapid City, SD, where there are some 16,000 American Indians in the
area. We are also working toward establishment of an American Indian
Specialized Health Care Training Clinic.
FUNDING REQUESTS
Section 117 Perkins Base Funding.--Funds requested under Section
117 of the Perkins Act above the fiscal year 2012 level are needed to:
1) maintain 100 year-old education buildings and 50 year-old housing
stock for students; 2) upgrade technology capabilities; 3) provide
adequate salaries for faculty and staff (who have not received a cost
of living increase for the past year and who are in the bottom quartile
of salary for comparable positions elsewhere); and 4) fund program and
curriculum improvements.
Perkins funds are central to the viability of our core
postsecondary educational programs. Very little of the other funds we
receive may be used for core career and technical educational programs;
they are competitive, often one-time supplemental funds which help us
provide the services our students need to be successful. Our Perkins
funding provides a base level of support (averaging over the past 5
years in excess of 40 percent of our core operating budget) while
allowing the college to compete for desperately needed discretionary
funds leading to additional resources annually for the college's
programs and support services.
Title III-A (Section 316) Strengthening Institutions.--Among the
Title III-A statutorily allowable uses is facility construction and
maintenance. We are constantly in need of additional student housing,
including family housing. We would like to educate more students but
lack of housing has at times limited the admission of new students.
With the completion this year of a new Science, Math and Technology
building on our South Campus on land acquired with a private grant, we
urgently need housing for up to 150 students, many of whom have
families.
While we have constructed three housing facilities using a variety
of sources in the past 20 years, approximately 50 percent of students
are housed in the 100-year-old buildings of what was Fort Abraham
Lincoln, as well as housing that was donated by the Federal Government
along with the land and Fort buildings in 1973. These buildings require
major rehabilitation. New buildings are actually cheaper rehabilitating
the old buildings that now house students.
Pell Grants.--We support maintaining the Pell Grant maximum to at
least a level of $5,635. This resource makes all the difference in
whether most of our students can attend college. As mentioned above 85
percent of our undergraduate students are Pell Grant recipients. We are
glad to learn of the February 6, 2013 report of the Congressional
Budget Office that the Pell Grant program is currently financially
healthy and can support full funding the maximum award levels for
fiscal years 2013 and 2014.
GOVERNMENT ACCOUNTABILITY OFFICE REPORT
As you know, the Government Accountability Office (GAO) in March of
2011 issued two reports regarding Federal programs which may have
similar or overlapping services or objectives (GAO-11-318SP of March 1
and GAO-11-474R of March 18). Funding from the Bureau of Indian
Education (BIE) and the Perkins Act for Tribally Controlled
Postsecondary Career and Technical Institutions were among the programs
listed in the supplemental report of March 18, 2011. The GAO did not
recommend defunding these or other programs; in some cases
consolidation or better coordination of programs was recommended to
save administrative costs. We are not in disagreement about possible
consolidation or coordination of the administration of these funding
sources so long as funds are not reduced.
Perkins funds represent on average over 40 percent of UTTC's core
operating budget. These funds supplement, but do not duplicate, the BIE
funds. It takes both sources of funding to frugally maintain the
institution. Even these combined sources do not provide the resources
necessary to operate and maintain the college. Therefore, UTTC actively
seeks alternative funding to assist with curricula, deferred
maintenance, and scholarship assistance, among other things
We reiterate that UTTC and other tribally-chartered colleges are
not part of State educational systems and do not receive State-
appropriated general operational funds for their Indian students. The
need for postsecondary career and technical education in Indian Country
is so great and the funding so small, that there is little chance for
duplicative funding.
There are only two institutions targeting American Indian/Alaska
Native career and technical education and training at the postsecondary
level--United Tribes Technical College and Navajo Technical College.
Combined, these institutions received less than $15 million in fiscal
year 2012 Federal operational funds ($8 million from Perkins; $7
million from the BIE). That is a very modest amount for two campus-
based institutions which offer a broad (and expanding) array of
training opportunities.
UTTC offers services that are catered to the needs of our students,
many of whom are first generation college attendees and many of whom
come to us needing remedial education and services. Our students
disproportionately possess more high risk characteristics than other
student populations. We also provide services for the children and
dependents of our students. Although BIE and Section 117 funds do not
pay for remedial education services, we make this investment through
other sources to ensure our students succeed at the postsecondary
level.
Thank you for your consideration of our requests.
______
Prepared Statement of the University of North Dakota and North Dakota
State University
On behalf of the University of North Dakota (UND) and North Dakota
State University (NDSU), thank you for the opportunity to submit our
written testimony regarding the fiscal year 2014 funding for the
National Institutes of Health (NIH) Institutional Development Award
(IDeA) program. We respectfully request your support of no less than
$310.0 million for this critically important program. We further
request that the subcommittee give serious consideration to legislative
language which would direct that future NIH budgets include funding for
the IDeA program that reaches no less than 1 percent of the total NIH
budget. IDeA was authorized by the 1993 NIH Revitalization Act (Public
Law 103-43) and funds only merit-based, peer-reviewed research that
meets NIH research objectives in the 23 IDeA States and Puerto Rico.
The States eligible for IDeA funding are defined as ``all states/
commonwealths with a success rate for obtaining NIH grant awards of
less than 20 percent over the period of 2001-2005 or received less than
an average of $120 million per year during that time period.''
Currently this includes 23 States and Puerto Rico--nearly half of the
States. Funding from this capacity-building program has been a key part
of the growth in research capacity and impact at the two North Dakota
research universities in recent years.
Funding for the IDeA program in fiscal year 2013 was $ 277.65
million. The total budget for NIH in fiscal year 2013 was $29.6
billion; thus in fiscal year 2013, the IDeA program--funding
competitively awarded biomedical research in nearly half the nation--
comprised only 0.94 percent of the entire NIH budget. The IDeA program
exists because the 23 eligible States overall receive less than 20
percent of NIH's extramural funding. The proposed reduction in the
President's fiscal year 2014 budget request of $52.1 million represents
a staggering 18.8 percent cut to the budget of the IDeA program, but
represents only 0.18 percent of the entire proposed NIH budget. Making
such a serious, disproportionate cut to a program designed to aid
small, rural States is manifestly unfair. This program is small in the
overall scheme of things at NIH, but huge for the States that compete
for these funds. Our requested funding level of $310.0 million
represents only 0.99 percent of the President's total fiscal year 2014
budget request for NIH.
Our State, North Dakota, has benefited immensely from the
competitive funding available through the IDeA program in the form of
COBRE (Center for Biomedical Research Excellence) and INBRE (IDeA
Networks of Biomedical Research Excellence) grants, and UND and NDSU
anticipate submitting a joint proposal in fiscal year 2014 for a new
INBRE grant.
At the University of North Dakota, we have been awarded funding for
three phases of a COBRE grant supporting research on neurodegenerative
diseases. We received funding for Phase III, the final phase of a COBRE
project, during fiscal year 2013. North Dakota has one of the largest
populations of the extremely old in the Nation (second only to Florida
in the percentage of its citizens over 85 years of age), and high rates
of neurodegenerative diseases such as Alzheimer's, Parkinson's, and
multiple sclerosis. As an example of the impact of this funding and the
research capacity it has built, externally funded research at the
University of North Dakota's School of Medicine and Health Sciences
(SMHS) has grown substantially. Prior to COBRE funding, in fiscal year
2002, the SMHS received about $12 million in external funding; by
fiscal year 2011, this had increased to $20.5 million, an increase of
71 percent. In 2010, when UND developed a new strategic plan for
research, neuroscience was identified as an existing strength on which
to build.
Thus, the neurobiology COBRE grant is achieving its intended
purpose of expanding our research capacity and our ability to compete
for Federal funding. That research is directed at problems of direct
interest to our citizenry, but also to the rest of the United States.
The University of North Dakota has submitted a proposal for an
additional COBRE grant on the topic of epigenetics. Epigenetics is the
study of how environmental factors influence the expression of our
genes; in many cases these changes in gene expression can then be
inherited by the next generation. We have been notified that the
submitted grant is a highly competitive one that addresses a burgeoning
area of research interest and importance. Despite this, fiscal year
2013 funding cuts and further reductions due to the sequester mean it
is unlikely that the grant will be funded.
North Dakota State University has received COBRE grants to fund
research at its Center for Protease Research and the Center for Visual
and Cognitive Neuroscience. COBRE funding supported important chemical
and biological research at the Center for Protease Research relating to
the roles played by enzymes that break down proteins in cancer and
asthma.
COBRE funding at NDSU's Center for Visual and Cognitive
Neuroscience facilitated research illuminating and ameliorating
conditions such as disordered perception, cognition, emotion, attention
and executive function, which are hallmarks of debilitating and costly
disease syndromes (e.g., ADHD, ARMD, agnosia, amblyopia, autism,
depression, dementia, dyslexia, hemi neglect, multiple sclerosis,
Parkinson's disease, PTSD, and schizophrenia).
COBRE funding has contributed to the success that both NDSU's
Centers have achieved in obtaining competitive grants from privates
sources and a variety of Federal agencies. Additionally, the COBRE
grants led to the publication of NDSU's research findings in
international, refereed publications and have aided in the recruitment
of new faculty and increased enrollments in related graduate and
undergraduate programs.
Another important IDeA program is INBRE, which provides funding to
build the biomedical workforce through activities ranging from outreach
to elementary school children to creating opportunities for
undergraduates to engage in research. This program has provided support
for undergraduate students at two- and four-year colleges in North
Dakota to participate in research during the summer at their home
institutions. This program includes two tribal colleges and serves
between 70 and 100 students each year. Another program at the
University of North Dakota serves about 60 undergraduates per year and
applications routinely exceed the number of slots that are available.
These programs are essential for keeping students in the pipeline for
the STEM (science, technology, engineering, and math) workforce.
Studies have repeatedly shown that engaging undergraduates in original
research is a powerful tool for retaining students in college so that
they graduate in a timely way.
A major emphasis has been on outreach programs to Native American
students, the minority group that is most under-represented in the
fields of science, engineering, and math. Between 25 and 35 Native
American students in grades 7-12 participate each year in a program
that uses traditional Native American tools to teach science. As many
as 40 students from tribal colleges are funded each year to visit UND
and learn about opportunities to transfer to the University and
complete their four-year degrees. INBRE provides support for transfer
students from tribal colleges through the Pathway program, a six-week
summer program that prepares participants for advanced coursework in
science. Pathway students can also receive tuition waivers from the
University. INBRE funding is also provided to support the American
Indian Health Research Forum on the UND campus each year; this forum
attracts attendees from across the Nation.
North Dakota, with a population of 672,591 according to the 2010
Census, is the smallest of all the IDeA States. Yet, our School of
Medicine and Health Sciences graduates a disproportionately large
number of primary care physicians who practice in rural areas, and 20
percent of all Native American physicians in the U.S. are graduates of
the University of North Dakota. This medical school is clearly making
important contributions to health care for underserved populations.
Like all medical schools, it must have a healthy research program
underpinning its training of physicians, and funding from the IDeA
program is critical to the health of that program and to building
research capacity for the future.
The IDeA States produce STEM graduates at the same per capita rate
as States with larger populations and larger research portfolios. The
students from IDeA States need and deserve the same exposure to
research as students in larger States. If the proposed reductions in
the President's fiscal year 2014 budget request for the IDeA program
are not rejected, North Dakota and other small, mostly rural States,
will receive a major setback in their efforts to increase their
capacity to undertake biomedical research and to train the next
generation of scientists who are vital to the health of our Nation and
economy.
The IDeA program is absolutely critical not only for the University
of North Dakota and North Dakota State University, but also for the
biomedical research capacity and capability of research institutions
nationwide. We sincerely appreciate the subcommittee's ongoing support
of the IDeA program and request that you give full consideration to our
recommendations and fiscal year 2014 request of no less than $310.0
million for the National Institutes of Health IDeA program. We further
request that the subcommittee consider legislative language directing
that future NIH budgets include funding for the IDeA program that
reaches no less than 1 percent of the total NIH budget.
______
Prepared Statement of the World Molecular Imaging Society
The World Molecular Imaging Society (WMIS) is dedicated to
developing and promoting all aspects of preclinical and clinical
multimodal medical molecular imaging to understand and effectively
treat life-threatening oncological, neurological, cardiovascular,
inflammatory, metabolic, infectious and other diseases. The WMIS is
gravely concerned with the continued negative impacts to the U.S.
research enterprise resulting from the significant decline in research
funding, particularly due to sequestration coming on the heels of years
of flat-funding. A higher level of research in medical molecular
imaging is required in the U.S. to increase our knowledge about disease
processes, disease detection, and therapy management, with the long-
term goal of improving the health of U.S. citizens that will provide
savings of billions of dollars.
The U.S. has, until now, been the leading force in medical
molecular imaging. Molecular imaging plays a central role in health
care as it significantly contributes to improved patient outcome and
cost-efficient healthcare in all major diseases. This high-impact field
is finding transformative applications in the understanding, detection,
and treatment of nearly all diseases. However, the impetus of this
multidisciplinary transformative field is under severe threat due to
declining funding that is impacting the U.S. economy in multiple ways:
--Rapid erosion of an exceptional workforce of highly trained
molecular imaging scientists that represent the culmination of
significant monetary and intellectual investments, often
supported in part by public grants, aid, etc. The opportunity
cost of their departure, therefore, is a profound;
--Decline of the U.S. as the world-leader in medical molecular
imaging sciences, and the emergence of China and other nations
as leaders in this field;
--Exploitation of U.S. intellectual property in medical molecular
imaging by nations with little or no research enterprise,
effectively discouraging complementary private research
investment in the U.S.;
--Falling attendance at scientific conferences directly impacting
local economies in host cities in the U.S., and undermining the
interactions among scientists from diverse fields, at all
stages of their careers (including students and young faculty),
cutting short the next round of game-changing technologies and
innovations; and
--Decreased market and student confidence in science-related fields
and infrastructure--entire industries that support the
scientific and imaging infrastructure are on the decline
resulting in major loss of jobs and trainees.
Molecular imaging is truly a poster child for the success of the
U.S.'s long history of investments in research. It represents a
confluence of hard sciences and life sciences; medicine, physics,
chemistry, computer science and anatomy. Out of decades of advances in
each of these fields, molecular imaging is changing the way medicine is
practiced, and it is just scratching the surface. Our field owns a
generous global competitive advantage in this area--one that promises
not just clinical impact but commercial as well. However, we cannot
continue to see our seed funding for research dry up, and our
scientists take their knowledge abroad. Other countries are waiting and
willing to reap the benefits--both public and private--that we've
already expended to bring us to this exciting point in scientific
discovery. We cannot lose it.
Because of this, the WMIS strongly supports an increase in the NIH
budget by at least 3 percent in fiscal year 2014. We also offer a plea
to Appropriators to join with their colleagues in the Senate to replace
the harmful sequester with a policy that does not seek to balance the
budget on the backs of productive discretionary programs like medical
research and science--which have remained essentially flat in nominal
dollars for the past decade.