[Senate Hearing 109-]
[From the U.S. Government Publishing Office]
DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION, AND
RELATED AGENCIES APPROPRIATIONS FOR FISCAL YEAR 2006
----------
U.S. Senate,
Subcommittee of the Committee on Appropriations,
Washington, DC.
MATERIAL SUBMITTED BY AGENCIES NOT APPEARING FOR FORMAL HEARINGS
[Clerk's note.--The Social Security Administration and the
Railroad Retirement Board were unable to testify and the
following information was received in support of their fiscal
year 2006 budget requests.]
[The information follows:]
SOCIAL SECURITY ADMINISTRATION
Questions Submitted by Senator Arlen Specter
human capital planning
Question. In January 2001, the General Accounting Office identified
strategic human capital management as a government wide high-risk area.
What steps are you taking to acquire, develop, and retain an
appropriate mix of agency staffing/talent, particularly in light of the
Agency's impending retirement wave? What is the Agency's plan for
creating an organizational culture that promotes high performance and
accountability and empowers and includes employees in setting and
accomplishing programmatic goals? How does the fiscal year 2006 budget
support these activities?
Answer. SSA has a long history of successful human capital
planning. We first analyzed the impact of our impending retirement wave
in 1998. This prompted development of a Future Workforce Transition
Plan (FWTP) which laid out the strategies to ensure that a highly
skilled staff was in place.
We update our analysis of projected retirements annually and make
appropriate adjustments to our recruitment, retention and succession
strategies. We expanded upon the FWTP to publish a comprehensive and
strategic Human Capital Plan in January 2004. The plan lays out how SSA
will use human capital to meet the Agency's mission and goals and
ensure that we have employees in place with the skills necessary to
continue SSA's tradition of excellent citizen service. Employees across
the Agency work together to accomplish these initiatives and, as a
result, SSA received a President's Management Agenda score of ``green''
for the Strategic Management of Human Capital in June 2004.
To date, we have maintained our green status by successfully
completing planned activities, continuing with initiatives underway and
adding new ones that will further improve our management of human
capital.
Since 2001, we have implemented a new national recruitment strategy
with the following key elements: (1) an integrated marketing campaign
with a new SSA brand entitled ``Make a difference in people's lives and
your own;'' (2) emphasis on the Inter/Intranet; (3) coordinated on-
campus college recruitment; (4) automated staffing/recruiting; (5)
practical methods for diversity recruitment; (6) streamlined hiring;
and (7) maximum use of hiring flexibilities. We have expanded on these
key elements through other key recruitment successes, including the
release of a National Recruitment Guide to ensure consistency and
excellence in our recruitment activities and the establishment of
partnerships with other Federal agencies to assist veterans with
transitioning to civilian employment.
We are maximizing the use of technology to improve recruitment and
hiring. SSA is in the process of transitioning to a new web-based
staffing automated system. We are also working to improve methods of
submitting, collecting, and processing electronic job applications.
Improving the application process in those areas is expected to improve
the hiring process by encouraging a larger number and more qualified
applicants to apply for Federal positions and by facilitating more
timely selections.
Our recruitment efforts have proven successful in attracting
quality hires. We hired over 15,000 employees in fiscal years 2001-
2004. For fiscal year 2005, we have hired 2,616 through March 2005.
This includes employees who were recently hired in support of the
recent Medicare legislation which will provide drug benefit subsidies
to the elderly.
We develop employees from entry-level through the Executive level.
Our orientation programs for new employees emphasize our organizational
culture and public service values.
SSA has received many accolades for its national leadership
development programs that have often been referred to as the ``best in
government.'' This reputation is based upon our use of competency-based
programs that include a rigorous selection process and a variety of
program features that produce well-rounded graduates. The programs
include the Senior Executive Service Candidate Development Program for
executives, the Advanced Leadership Program for middle- and senior-
level employees, the Leadership Development Program for employees at
the journeyman level, and the Presidential Management Fellows Program
for entry-level professionals.
SSA has redesigned entry level training, developing job-specific
training competencies and delivering related training for about 24,000
positions in the claims representative, service representative, and
teleservice representative occupations. In fiscal year 2006, SSA will
develop competency-based training that will be used for another 4,000
positions in the benefit authorizer, claims authorizer and technical
support technician occupations.
SSA is also delivering training to prepare employees for the new
Medicare legislation. The intent of this training is to ensure all
employees understand and can process the workloads associated with the
new legislation.
We are also maximizing the use of technology in the training arena
by implementing a project development plan to migrate to a common,
government-wide electronic-learning service.
Our 2-year retention rate for new hires has been gradually
increasing from 84 percent for 1998 hires to 89.9 percent for 2002
hires; a rate which is considered outstanding in the private and public
sectors. We have enhanced our orientation process and are improving our
exit interview processes to further support our high retention rate.
We are promoting high performance and accountability by improving
our performance management systems. We implemented new multi-tiered
appraisal systems for Senior Executive System employees in October 2002
and for GS-15s in October 2003. We are further improving our
performance management systems by implementing a new multi-tier
performance appraisal model for union-represented employees that, when
implemented, will differentiate between levels of performance and
enhance managers' ability to hold employees accountable for results.
Full funding of the fiscal year 2006 President's budget will allow
us to continue to carry out our Strategic Human Capital Plan
activities.
DIRECT SERVICE POSITIONS
Question. What is your plan to increase the number of direct
service positions, while maintaining appropriate levels of technical,
policy, and administrative support staff? The Subcommittee is aware
that SSA met its long-term goal of reallocating 5 percent of
headquarters positions to direct service in fiscal year 2004.
Specifically, how was this accomplished? What does the budget assume
for such redirections in fiscal year 2005 and fiscal year 2006?
Answer. We met our goal through a combination of redeployments and
overall attrition in staff components. For example, 71 employees
transferred from staff components to direct service positions in the
Office of Central Operations in November 2002. The fiscal year 2006
budget request assumes no additional redirections for fiscal year 2005
or fiscal year 2006. The fiscal year 2006 budget request does assume an
increase in full-time equivalents from fiscal year 2005, attributable
mainly to the 2,200 direct service employees hired in fiscal year 2005
to handle workloads related to the new Medicare prescription drug
program. Although hired initially to deal with this new Medicare
workload, these employees will be trained on all of SSA's programs so
they can ultimately help backfill for the 3,000-4,000 employees we lose
each year due to retirements and resignations.
ENRICHMENT OPPORTUNITIES AND LEARNING
Question. One long-term outcome identified in SSA's Agency
Strategic Plan is ensuring ongoing enrichment opportunities and
training. Specifically, how does the fiscal year 2006 budget support
this long term outcome?
Answer. SSA is dedicated to improving its training and development
programs in order to build the skills our employees at all levels need
to deliver quality customer service in the 21st century's technological
environment. To fill emerging skills gaps, SSA is focusing on improving
the training it provides all its employees--from the lowest levels to
the top. We are using the lessons we learned from ``getting to green''
to stay focused on our commitment to improve learning at SSA so all of
our employees are prepared to support SSA's mission.
Currently, SSA's Office of Training is moving forward to:
--Develop and implement a competency-based training approach to
ensure that our employees on the front-line doing mission
critical work have the skills and knowledge they need to
effectively address the concerns of the American public.
--Ensure that the Agency has the number of well-rounded, competent
leaders it needs by implementing a new leadership development
strategy that will enhance SSA's nationally acclaimed career
development programs.
--Open up more learning opportunities for SSA's employees by moving
from SSA's Online University to the government-wide GoLearn
online learning system. SSA employees nationwide will be able
to select from over 2,000 courses that are designed to make the
most of their potential.
Of the many influences that are shaping SSA's future, none may be
more fundamental or influential than the training we provide our
employees. Our shared learning helps us to forge a sense of common
purpose nationwide and provides us with the knowledge and skills we
need to do our jobs. SSA's future success at meeting the public's
increasingly varied needs depends on our ability to open up learning
opportunities that make the most of our employees. Because of this, SSA
is continuing to reassess the needs of its workforce and investing in
workforce learning and performance for each of our employees and the
Agency as a whole.
--SSA provided an average of 48 hours of training per employee over
SSA's Interactive Video Teletraining (IVT) network and Online
University. SSA employees were particularly interested in new
IVT broadcasts that covered the new Medicare policy, security
in SSA's offices, and the growing use of the Internet.
--The Office of Training is continuing to work with Operations to
redesign the training for new or recently promoted employees in
our mission critical positions. In redesigning our training,
SSA has been using results from private sector source surveys
and studies to develop a competency-based training program.
This approach provides our students with the knowledge, skills,
and abilities they need to do their jobs in an environment that
is becoming increasingly automated.
By the end of last year, the entry-level training for Title II and
Title XVI Claims Representatives (CRs), Service Representatives (SRs),
and Teleservice Representatives were redesigned to reflect this
competency-based approach.
Redesigned training lessons improve the way our new employees learn
their jobs by integrating information regarding SSA's programs and
policies with structured off-air activities and on-the-job-training.
This plays a key role in helping new employees master the technology
and automated processes that are a critical element of today's SSA work
environment. Mentors help guide and support students as they develop
new skills by practicing on SSA computer systems, taking part in role-
playing, and having on-the-job experiences that will serve them well
when they take on their new roles full time.
The Office of Training has also been developing training for
specific groups of employees. Working with Operations' offices across
the country, they have completed the development of competency-based
training for Benefit Authorizers, Claims Authorizers, and Technical
Support Technicians in the Program Service Centers by 2006. They have
also improved fundamentals training for employees who do not provide
direct services to the public. This training gives general information
about the Title II and Title XVI programs and strengthens our
commitment to work purposefully together in shaping and managing these
programs.
Because of the continuing changes in the disability programs, SSA
is working to update and expand the disability training materials for
new or recently promoted disability adjudicators. SSA also provides a
significant amount of training for OHA employees who process disability
claims at the appeals levels. Topics that SSA provides on its IVT
network focus on OHA's Case Processing Management System, Speech
Recognition Software, Digital Recording, Dismissals, Remands, and
Docket Management.
The Office of Training is evaluating the training needs of SSA's
Executive Officers and expects to develop a core curriculum for that
position by the end of the fiscal year.
Technology has also played an important role in SSA training.
--During fiscal year 2004 and into fiscal year 2005, Social Security
continued to move forward towards realizing its vision of
providing IVT nationwide. By the end of 2004, employees in more
than 100 additional offices were linked to the IVT network.
Today, over 98 percent of Agency and Disability Determination
Service (DDS) employees have access to IVT.
--The IVT network continues to play an important role in ensuring
that our employees learn what they need to know, when they need
it. The first part of the Medicare Part D subsidy training on
policy was developed and successfully delivered over the IVT
network. The second part of this training, which will cover
systems and subsidy changing events, is being readied for
delivery this May.
--SSA is working behind the scenes to improve the delivery of its IVT
broadcasts. With the conversion of the headquarters' practice
studio, SSA now has a fully functional digital broadcast
facility in Baltimore that helps us improve our ability to get
up-to-date programs to our employees. SSA is also upgrading its
other six broadcast facilities and enhancing our automated
scheduling and evaluation procedures as well in an effort to
better ensure that our IVT programs reach the employees who
need them.
--SSA is expanding the benefits and values of online learning through
the SSA GoLearn training site. SSA GoLearn replaces SSA's
current Online University (OLU). All employees and their
managers will have unprecedented opportunities to take over
2,000 courses at their workstations or at home, at no cost to
them or their offices. Each employee will learn at his or her
own pace and be able to select courses that will help them
learn and perform better or become eligible for other, more
rewarding work. Successful learners will automatically get
credit for completed courses on their personnel records,
without filling out any paperwork.
--IVT provides disability policy training to SSA and the DDS
employees. IVT broadcasts provide these employees with help in
handling a host of difficult technical issues, including
electronic disability, evidence in childhood cases, disability
fraud detection, and disability onset. SSA also broadcasts
vocational and adjudicative tips in case development and
processing for employees who handle SSA's disability workloads.
Since 2004, SSA has ensured that it has the talent it needs to lead
the Agency by supporting the expansion of the national leadership
development programs.
--60 employees have been selected to take part in the Leadership
Development Program (LDP) that will begin mid-year. The GS-9
through GS-11 employees who will participate in the program
will have the opportunity to move forward in the Agency by
making the most of the training and rotational assignments
available to them in the 18-month program.
--The Senior Executive Service Candidate Development Program (SES
CDP) is expected to be announced later this year. The SES
candidates are expected to begin their program in 2006. In
order to develop the qualifications they need to become the
government's top executives, SSA's SES candidates will take a
variety of Agency rotational assignments and some will spend
time at other Federal agencies to prepare them to successfully
lead change within the Federal Government.
--Approximately 26 top graduate students are expected to be selected
at the end of this calendar year for the Presidential
Management Fellows (PMF) 2-year development program.
SSA is continuing to seek new ways to ensure that the Agency has
the leadership it needs to succeed in the 21st century. Earlier this
year, a national workgroup of manager and trainers in headquarters and
from the field worked together to establish a new strategy for
developing leaders at SSA. The Office of Training is getting nationwide
comments on the strategy which is designed to foster competencies that
leaders and managers need to effectively manage people, achieve
results, and promote performance management. SSA anticipates
implementing this new, improved approach to leadership by the end of
this year.
Full funding of the fiscal year 2006 President's budget request for
SSA will permit us to continue to carry out these training and
development programs.
INITIAL DISABILITY CLAIMS
Question. Over the period fiscal year 2000-fiscal year 2004,
initial disability claims pending have increased by more than 16
percent and now total more than 620,000, despite an increase in agency
resources from $6.6 billion to $8.3 billion, or almost 26 percent.
Please provide a breakout of DDS (Disability Determination Service)
resources (dollars and staffing) over this period. What explains this
growth in backlogs, despite increasing Agency resources? What specific
actions are underway or planned in fiscal year 2005 and fiscal year
2006 to ensure more timely adjudication of disability cases and more
cost-effective expenditure of agency resources?
Answer. The growth in initial disability claims pending is the
result of a dramatic growth in initial claims receipts. Over the fiscal
year 2000-2004 period, DDS initial claims receipts increased almost 24
percent.
SSA responded within available resources to this increase in
receipts by: (1) increasing DDS resources; (2) initiating fewer
continuing disability reviews in fiscal year 2003 and fiscal year 2004
and redirecting those resources to process initial claims; and (3)
improving productivity in the DDSs. In spite of these efforts, we were
unable to keep up with the growth in receipts.
In fiscal year 2005, we implemented a plan to lower initial pending
levels to 592,000 by the end of the fiscal year. Thus far this year, we
have succeeded in lowering pendings to 608,000. To help achieve the
pending goal, increased funding was provided to the DDSs, and DDSs were
authorized additional hiring and increased overtime. In addition, where
requested and needed, Federal assistance in case processing is being
provided to some DDSs. In fiscal year 2006, the President's budget
request reflects productivity and processing time improvement for the
DDSs, mainly through an electronic disability claims process (eDib).
Despite not receiving the full President's budget request for the
last two fiscal years, my Service Delivery Budget goal is still to
reduce disability claims pending to 400,000 by 2008. To achieve this,
we need the Committee's support, including full funding for the
President's budget request of $9.403 billion for SSA's administrative
expenses.
A breakout of DDS resources (dollars and staffing) for fiscal year
2000-fiscal year 2004 is provided in the chart below.
[Dollars in millions]
------------------------------------------------------------------------
Year Worrkyears Amount
------------------------------------------------------------------------
2000.......................................... 14,231 $1,461
2001.......................................... 14,397 1,513
2002.......................................... 14,947 1,588
2003.......................................... 14,700 1,593
2004.......................................... 14,772 1,672
------------------------------------------------------------------------
EDIB AND IMPLEMENTATION
Question. The Government Accountability Office (GAO) added Social
Security's disability programs to its list of High-Risk programs. SSA's
fiscal year 2006 budget request supports complete implementation of an
electronic disability process--eDIB--as a means to improving the
timeliness of and efficiency associated with disability decision. How
much funding is included in the fiscal year 2006 request to support the
eDIB? In several recent reports, GAO has raised concerns about the
cost-benefit analysis, risk assessment and mitigation, and
implementation plan for this initiative. Given the difficulties
experienced in previous attempts to improve this process, what
contingencies are in place to deal with challenges in implementing
eDIB? Specifically, what resources are available and supports in places
to deal with any potential implementation challenges?
Answer. SSA has requested approximately $50 million in fiscal year
2006 for information technology (IT) hardware/software services, as
well as internal IT staff to support eDib.
The most important thing to note is that eDib functionality was
implemented by January 2004 and has been working effectively since that
time. This includes the Internet Disability Report, the Electronic
Disability . . . Collect System (EDCS), new hardware and software for
the State legacy systems, the Document Management Architecture (DMA),
and the Office of Hearings and Appeals (OHA) Case Process Management
System (CPMS). We are well on our way to the completion of the eDib
rollout to all of the Social Security and State offices.
SSA has put many controls and resources into the process to assure
our success as we implement these features, as we build upon them, and
as we continue to roll-out full electronic folder capability across the
nation to all components involved in processing the disability
workload. This includes regular high level monitoring of the project
status. There is frequent contact among all of the SSA components
involved in eDib including staff from systems, policy and operations.
SSA also deploys policy, systems, workflow, and usability experts to
field offices, Disability Determination Service (DDS) offices, OHA
offices, and Office of Quality Assurance (OQA) sites to learn first-
hand about the issues faced by staff working with the eDib applications
and works to resolve any problems quickly.
In addition, SSA is conducting an Independence Day Assessment (IDA)
before moving a DDS, OHA, or OQA office to a fully electronic process
(i.e., new cases can be processed in the electronic folder with no new
paper folder created). This assessment ensures that everything is
working properly before going fully electronic by validating the
business process, the systems functionality, and other processes and
procedures. The assessment also makes sure the electronic folder meets
all documentation standards set forth by SSA and the National Archives
and Records Administration (NARA).
SSA has assigned an ``integrator'' for each State. The integrator
is responsible for tracking the progress of testing and implementation
in each State and is the single point of contact for the DDS should
they encounter issues. The integrator is responsible for identifying
the component/person that can address and resolve each issue. This has
proven to be a very successful model for eDib implementation. In
addition, each DDS receives onsite support by their legacy system
vendor and SSA Systems staff during testing and training, as well as
during the first week of production.
We have placed a strong focus on risk management. We hired a
contractor to work with our Project managers to develop Risk Management
Plans for each of the major eDib projects. We have assigned each of the
risks to the appropriate Project Managers for their use in addressing
the risks. Our contractor updates these plans with the Project Managers
to assure continued monitoring and mitigation of risks.
DISABILITY REDESIGN PROCESS
Question. According to SSA's service delivery assessment of the
disability process completed in 2002, persons pursuing their disability
claims through all levels of Agency appeal wait an average of 1,153
days for that final decision. Due to backlogs, cases that go through
all levels of appeal spend nearly 50 percent of the time (535 days)
waiting for SSA action. Commissioner, you have proposed an ambitious
redesign concept for the disability determination process, and also
have established a date of January 2006 as the earliest major changes
in the disability determination process may become effective.
Improvements to this process are needed, as the current process takes
too long. What process will you follow for making final decisions about
the redesign plan and what is the timeline for making those decisions?
How much funding is proposed in the FY'06 budget associated with
redesign implementation (OB) and what redesign activities do they
support?
Answer. Improving the disability process is one of my highest
priorities as Commissioner. I am close to making the final decisions
that will convert my new approach for improving disability
determinations into a proposed regulation which will provide the right
decision as early in the process as possible and create work
opportunities for people with disabilities.
When I announced my new approach, I stressed that the changes
envisioned were predicated on successful implementation of our
electronic disability system (which we call eDib) and that it was
critically important to listen to the ideas of all interested parties
as we developed the disability determination improvements.
I am pleased to report that our State-by-State roll out of eDib is
on track. All of our field offices across the nation are now using the
Electronic Disability Collect System (EDCS) that initially creates the
electronic folder. This system was implemented at the first State
Agency Disability Determination Services (DDS) in January 2004, and
additional DDSs have continued to implement eDib ever since. Currently,
eDib has been rolled out in all States except North Dakota, Alaska,
Nebraska, New York and Washington, DC. With the exception of New York,
all remaining States will be rolled out by the end of June 2005. At the
same time, our Office of Hearings and Appeals (OHA) has begun using the
new Case Processing and Management System (CPMS), which is a new
software for processing cases and managing OHA office workloads. CPMS
will enable OHA to work with the electronic file.
In view of the complexity and importance of the disability
programs, my second strategy, having an open process, has been
invaluable in my decision making. Last year, I launched a massive
outreach effort to obtain and give thoughtful consideration to all
comments on the current system and our proposed improvements. I created
the Disability Service Improvement Staff within my immediate office to
coordinate this effort and I have been taking a personal role in
listening to those involved and interested in the disability process. I
have personally participated in more than 60 meetings with more than 40
organizations--both within SSA and outside of the Agency. As I have
been making decisions, I have carefully considered hundreds of views
and suggestions received from the Congress, the general public, and
many public and private sector groups and individuals.
With respect to fiscal year 2006 funding, I anticipate that our
plan to roll out the new process region by region will enable us to
implement these improvements without seeking additional resources
beyond those the President requested for SSA from the Congress for
fiscal year 2006.
SPECIAL DISABILITY CASES
Question. The Subcommittee is aware that SSA's latest plan is to
complete the entire review of the special disability cases by 2010.
What specifically is the Agency's plan for accomplishing this goal and
how much funding will be required to review all of these cases?
Answer. As of fiscal year 2004, we have processed 96,600 cases of
the estimated 300,000 individuals eligible for Supplemental Security
Income (SSI) who are also entitled to (but not receiving) Social
Security Disability Insurance benefits. In fiscal year 2005, we plan to
process 30,500 cases at a cost of $78 million. The fiscal year 2006
budget includes $79 million for the processing of 30,600 special
disability cases.
Through fiscal year 2004, SSA spent approximately $175 million on
the processing of Special Disability cases. Assuming full funding of
the President's fiscal year 2006 budget request, as well as sufficient
funding in future years to support continued processing of this
workload, we expect to complete case processing by September 2010 at an
administrative cost of about $630 million.
CDRS
Question. The Subcommittee notes that one of the Agency's Long-Term
Outcomes under its Stewardship goal is to remain current with
Disability Insurance CDRs and to regain currency with SSI CDRs. What
are the performance outcomes the Agency needs to achieve during the
years fiscal year 2005 through fiscal year 2009 to meet this long-term
outcome measure? What is SSA's plan for meeting this goal? What best
practices did SSA develop during the period when Congress provided
special funding that are being applied to the process currently that
will ensure the most cost-effective expenditure of LAE resources? How
will the Agency determine an appropriate balance between Continuing
Disability Reviews processed through mailers and those cases requiring
a full medical review?
Answer. To remain current in Title II CDRs and achieve currency in
Title XVI CDRs by the end of fiscal year 2009, SSA would need to
process over 7.5 million CDRs, including those that will come due
during the period fiscal year 2006-fiscal year 2009 and CDRs that we
have been unable to initiate through fiscal year 2005 because of
funding limitations. While we are updating our CDR plan to reflect more
current information, including the latest projections of initial
disability claims receipts, we do not believe that we will be able to
achieve Title XVI currency until after fiscal year 2009.
The President's fiscal year 2006 budget includes budget enforcement
legislation that would place caps on net discretionary budget authority
and outlays. The legislation would permit adjustments to these caps for
spending above a base level for several government-wide program
integrity activities, including SSA's CDRs. The amount of the
adjustment for CDRs is $189 million, which means if the President's
proposal is enacted, $189 million of SSA's budget request would not be
counted towards the overall cap on discretionary budget authority.
Congress provided SSA with special funding for CDRs, outside the
discretionary budget caps, from fiscal year 1996 through fiscal year
2002. During this period and continuing, SSA has worked continuously to
improve the efficiency and effectiveness of the CDR program. The
results are borne out by the following passage from SSA's most recent
Annual Report to Congress on CDRs covering fiscal year 2003:
``SSA's CDR process has consistently yielded a favorable ratio of
savings to costs in the Disability Insurance (DI) program. Prior to the
implementation of the current process for case selection, it was
estimated that we were achieving $3 in DI program savings for each $1
in administrative costs invested in full medical CDRs. The addition of
the mailer process beginning in 1993 was estimated to result in a
doubling of this ratio to approximately $6 to $1.
``Actual results to-date for the period during which supplemental
administrative funding has been available have been even better than
anticipated. During this period, the number of cases processed has
expanded significantly, especially in the review of SSI cases. This
expanded process has yielded savings-to-cost ratios for the seven
fiscal years 1996-2002 averaging roughly $10.3 to $1.''----From SSA's
Annual Report of Continuing Disability Reviews, fiscal year 2003;
published October 27, 2004.
The breakthrough innovation was the implementation of a statistical
profiling/mailer process in 1993 which permitted SSA to reliably
identify large cohorts of beneficiaries with a low probability of
cessation due to medical improvement for whom the expensive full
medical review process is not required. The CDR statistical scoring
models are a series of mathematical formulas designed to predict the
likelihood of medical improvement for each Retirement Survivors
Disability Insurance (RSDI) beneficiary and SSI adult recipient. Based
on the scores generated by these models and a statistical threshold
which determines whether a mailer or full medical examination would be
the most cost effective type of review to perform, cases scoring below
the threshold are targeted for CDR mailers, and those scoring at or
above the threshold are targeted for full medical reviews.
During the early years of the special funding we focused primarily
on improving internal systems and operational processes needed to
reliably control and track more than a million reviews annually. SSA
engaged a statistical contractor in fiscal year 2000 to improve the
performance of the statistical modeling. Since then, the contractor has
updated and expanded the data and mathematical formulas upon which the
statistical scoring is based.
SSA has been able to implement several processing improvements
based on research findings by our statistical contractor. Since fiscal
year 2002, SSA has been able to use the profiling/mailer process to
identify RSDI disabled workers with a statistical model score
signifying ``medium'' probability of medical improvement who do not
require a full medical review. The process was extended to SSI disabled
adult beneficiaries in fiscal year 2005. In fiscal year 2003, we were
able to apply Medicare usage data to identify additional RSDI disabled
workers with a low or medium probability of medical improvement.
Altogether since fiscal year 2002, these innovations have avoided well
over 500,000 full medical reviews, more than $300 million in
administrative costs, and significantly reduced unnecessary burden on
our most severely disabled beneficiaries.
We continuously monitor the performance of the statistical models
and can readily make enhancements that are suggested. In addition, the
models have been scrutinized by several teams of auditors and found to
be accurate and reliable. And, together with our statistical
contractor, we continue to look for additional processing efficiencies
that can be implemented in the future.
With respect to determining the appropriate balance between CDRs
processed through mailers and those performed as full medical reviews,
this decision is determined through the CDR statistical scoring models.
For cases with medical re-examinations due to be scheduled in the
particular fiscal year, we begin releasing CDR mailers and full medical
reviews at the start of the fiscal year, and continue the release
process throughout the year, with the goal of releasing all cases due
for a CDR in that year.
TICKET TO WORK
Question. According to the ``Justification of Estimates for
Appropriations Committees'' for the fiscal year 2006 budget request,
the Ticket to Work Program will be expanded to all States and U.S.
Territories by September 2004. Specifically, how much funding is
available within the fiscal year 2006 request for the Limitation for
Administrative Expenses account to support implementation of the Ticket
to Work program and what activities are supported? How much funding
from other sources within the fiscal year 2006 budget request support
the program?
Answer. The administrative budget for fiscal year 2006 includes
$39.4 million for Return to Work activities. This funding is for
Benefits Planning and Assistance Cooperative Agreements ($23 million),
Protection and Advocacy grants ($7 million), and the Program Manager
Contract ($9.4 million).
The following chart summarizes other objects administrative costs
of the Ticket to Work program by major category:
RETURN TO WORK
[In millions of dollars]
------------------------------------------------------------------------
Fiscal year
-------------------------
2005 2006 budget
estimate submission
------------------------------------------------------------------------
Benefits Planning & Assistance Cooperative 23.0 23.0
Agreements (including training and technical
assistance)..................................
Protection & Advocacy Grants.................. 7.0 7.0
Program Manager Contract...................... \1\ 6.9 9.4
-------------------------
Total................................... 36.9 39.4
------------------------------------------------------------------------
\1\ The fiscal year 2005 contract is only for nine months. The contract
is being re-competed for fiscal year 2006. The President's budget
estimates $9.4 million for fiscal year 2006, the same as the full year
cost for fiscal year 2004.
Benefits Planning and Assistance and Cooperative (BPAO) Agreements
are intended to ensure that community based benefits planning and
assistance outreach services are available across the United States and
its territories. The law authorized $23 million to be appropriated each
year and the Social Security Protection Act of 2004 (Public Law 108-
203) extended this authorization through 2009.
The Protection and Advocacy (P&A) grants are used to provide advice
to beneficiaries and to provide an avenue for resolving disputes. The
Social Security Protection Act of 2004 also extended authorization to
provide funding for P&A grants through fiscal year 2009. The budget
continues funding of $7 million for P&A grants in fiscal year 2005 and
fiscal year 2006.
The Program Manager Contract provides funds to an outside
contractor to help SSA manage the Ticket to Work program. The contract
will be re-competed and the required funding has been estimated to be
$9.4 million for fiscal year 2006.
The budget also includes program funding to cover outcome and
milestone payments made to Employment Networks (ENs) under the Ticket
to Work program. State Vocational Rehabilitation (VR) agencies have the
option, on a case-by-case basis, to elect to be paid under the
reimbursement payment system or as an EN. The Beneficiary Services
Budget for fiscal year 2006 includes $262 million to cover
reimbursement payments to VR agencies and Ticket payments to ENs (see
chart).
The chart below summarizes the estimated Beneficiary Services
payments:
BENEFICIARY SERVICES PAYMENTS
[In millions of dollars]
----------------------------------------------------------------------------------------------------------------
OASDI SSI
---------------------------------------------------
Fiscal year Fiscal year
---------------------------------------------------
2005 2006 2005 2006
----------------------------------------------------------------------------------------------------------------
Reimbursement Payments (VR)................................. 80 104 52 67
Ticket Payments (EN)........................................ 25 54 25 37
---------------------------------------------------
Total Payments........................................ 105 158 77 104
----------------------------------------------------------------------------------------------------------------
DISABILITY PROGRAM NAVIGATOR
Question. How has SSA collaborated with other federal agencies and
partners to increase the work opportunities of individuals receiving
Social Security and SSI disability payments and what resources are
included within the fiscal year 2006 budget request to carry out such
activities? Specifically, what has been the experience in increasing
work opportunities through the Disability Program Navigator housed in
One Stop Centers and the Area Work Incentive Coordinators? Why is
funding for the Disability Program Navigator position being
discontinued in 2005?
Answer. On September 30, 2002, SSA and DOL entered into an
interagency agreement to jointly fund a two-year pilot and evaluation
of a new position within the One-Stop Career Center system, the
Disability Program Navigator (DPN). This funding, in the form of
cooperative agreements, was distributed to 14 States in fiscal year
2003. A primary objective of the Navigator is to increase employment
and self-sufficiency for individuals with disabilities by linking them
to employers and by facilitating access to programs and services that
will enable their entry or reentry into the workforce.
SSA and DOL funded the DPN's for a second year which will support
the project through June 2005. During the second year of this joint
initiative, Navigators experienced increased activity in the area of
relationship building within the One-Stop Center as well as with
employers, Vocational Rehabilitation agencies, Benefit Planning,
Assistance and Outreach (BPAO) providers, and SSA Area Work Incentive
Coordinators (AWIC). Evaluation survey data is currently being
collected and, based on the results, SSA will make a decision regarding
funding for an additional year.
The SSA AWICs are the Agency focal point for public information
outreach and education efforts for the Ticket to Work program. The
fifty-five nationwide AWICs work closely with the external Ticket to
Work partners, such as Protection and Advocacy representatives, BPAO
representatives, Employment Networks (ENs), Disability Program
Navigators, Vocational Rehabilitation and other disability advocates.
In some regions AWICs are included in regional training events with the
BPAOs and have partnered with Maximus to provide training to the ENs.
AWICs, Plan for Achieving Self-Support (PASS) specialists and SSA
regional office staff participate in the training and refresher
training sessions.
In addition, SSA has entered into a number of interagency
agreements and cooperative agreements which are focused on increasing
work opportunities for individuals receiving disability benefits.
SSA has entered into a $100,000 interagency agreement with HHS'
Office of the Assistant Secretary for Planning and Evaluation (ASPE) to
subcontract the evaluation of the Florida Freedom Initiative (FFI). The
FFI is an expansion of a Real Choice Systems Change grant from the
Centers for Medicare and Medicaid Services (CMS), which is targeted to
a subpopulation of participants in the section 1115 waiver
demonstration called Consumer-Directed Care Plus. This subpopulation
consists of adults with mental retardation/developmental disabilities.
In addition to the financial commitment to the evaluation of the FFI,
SSA will be waiving certain SSI and SSDI program rules for FFI
participants to test whether the combination of Social Security and CMS
waivers fosters greater self-sufficiency among demonstration
participants.
SSA's Youth Transition Demonstration (YTD) consists of seven
cooperative agreements in six States (California, Colorado, Iowa,
Maryland, Mississippi, and New York). The goal of these cooperative
agreements is to find more effective ways to enable youth who receive
SSI and SSDI as well as those who are at risk of receiving these
benefits, to transition successfully to work or post-secondary
education and ultimately to maximize their economic self-sufficiency.
These seven cooperative agreements were awarded September 30, 2003 for
up to five years. The latest budget estimate for fiscal year 2006
includes $11.8 million for funding the demonstration projects,
evaluation and technical assistance. These partners are collaborating
at the State level with the Vocational Rehabilitation Services,
Department of Education, Department of Labor One Stop Centers as well
as other State and local agencies.
Since 2001, SSA has been working under an Interagency Agreement
with DOL's Office of Disability Employment Policy (ODEP) to promote
SSA's Ticket to Work Program within DOL's ``Employer Assistance
Referral Network'' (EARN). DOL has incorporated Ticket to Work into a
specialized unit of EARN called ``Ticket to Hire'' (TTH). EARN's
primary purpose is to provide employers with a one-stop service to help
them locate and recruit skilled candidates with disabilities for jobs.
TTH matches employers' job openings with qualified, job-ready
candidates from the Ticket to Work Program. Presently, there is
$600,000 budgeted for the continuation of this Interagency Agreement
for fiscal year 2006.
OHA HEARINGS
Question. Over the period fiscal year 2000-fiscal year 2004, the
number of social security hearings pending have increased by 90 percent
to more than 590,000, despite an increase in agency resources from $6.6
billion to $8.3 billion, or almost 26 percent. Pending hearings grew by
nearly 80,000 during the last fiscal year and the average processing
time increased by almost 14 percent, despite the provision of
additional staff support to OHA and the hiring of 103 administrative
law judges. Please provide a breakout of Office of Hearings and Appeal
resources (dollars and staffing) over this period. What accounted for
this growth in backlogs, despite increasing agency resources? What
actions are underway or planned in fiscal year 2005 and fiscal year
2006 to ensure more timely dispositions and more cost-effective
expenditure of agency resources?
Answer. The inability to hire ALJs between fiscal year 2001 and
fiscal year 2004 resulted in increased cases pending, even though we
were able to hire 103 ALJs in fiscal year 2004. This ALJ shortage,
along with a 14 percent increase in case receipts during the same time
period, has also increased processing time. OHA has hired an additional
100 ALJs during fiscal year 2005, and anticipates hiring additional
ALJs during fiscal year 2006 which will, when these ALJs are fully
trained, facilitate case processing. Other actions being implemented to
decrease processing time include the:
--development of File Assembly Units for assembling files for
hearings;
--establishment of a Centralized Screening Unit which reviews and
prepares cases for potential On-The-Record Decisions;
--implementation of various initiatives at the hearing level to
expedite the issuance of decisions. These include the
following: screening cases for on-the-record allowances;
issuance of fully favorable decision by the ALJ at the hearing
(bench decisions); providing an easily prepared decision format
for ALJ's to prepare decision findings; and
--electronic developments such as eDib, the Digital Recording
Acquisition Program and the Case Processing Management System
(CPMS), are expected to expedite case processing and tracking.
Despite not receiving the full President's budget request for the
last two fiscal years, my Service Delivery Budget goal is to eliminate
the hearings pending backlog by 2010. To achieve this, we need the
Committee's support, including full funding for the President's budget
request of $9.403 billion for SSA's administrative expenses.
The breakout of OHA's resources (dollars and staffing) over the
period covering fiscal year 2001 through fiscal year 2004 is as
follows:
[Dollars in millions]
------------------------------------------------------------------------
Year Workyears Amount
------------------------------------------------------------------------
2001.......................................... 7,945 $692.8
2002.......................................... 8,049 751.1
2003.......................................... 7,903 815.7
2004.......................................... 8,204 867.0
------------------------------------------------------------------------
HIRING ALJS
Question. What is SSA's plan for hiring Administrative Law Judges
in fiscal year 2005 and fiscal year 2006? How does the fiscal year 2006
budget request support continued improvement in Administrative Law
Judge productivity, one way to help reduce the growing average
processing time for hearings, which is up 31 percent from fiscal year
2000 to fiscal year 2004? The Committee is aware of the more than 100
day decrease in average processing time for hearings associated with
the use of the video teleconferencing capability. What are the savings
associated with the expansion of these facilities proposed in the
fiscal year 2006 budget request?
Answer. OHA hired 100 ALJs for fiscal year 2005 and plans to hire
additional ALJs in fiscal year 2006 depending on the level of funding
available. After the nine-month learning curve, we expect that the
increase in ALJ resources will help reduce the hearings backlog, and as
a result, reduce the average processing time.
Including the 80 additional sites installed this fiscal year, there
now are a total of 240 video teleconferencing sites in operation. We
have conducted nearly 12,000 video hearings this fiscal year through
April compared to 4,000 through April of fiscal year 2004. Video
hearing usage contributes to ALJ productivity improvements because
fewer hearings are postponed, ALJ travel is decreased, and expert
resources are more accessible.
OHA'S CASE PROCESSING MANAGEMENT SYSTEM
Question. The new Office of Hearings and Appeals Case Processing
Management System was scheduled to be completed by September 2004. What
training resources are being expended to support its successful
implementation? What does the fiscal year 2006 budget assume about
savings related to this new system in fiscal year 2005 and fiscal year
2006?
Answer. The Case Processing Management System (CPMS) conversion
began in May 2004 and was completed in August 2004. The following
training resources supported successful implementation of the Case
Processing Management System (CPMS):
--CPMS training began in April 2004 and ended in July 2004;
--CPMS training took place ``onsite'' at each hearing office (HO);
--CPMS training was performed over a 40-hour week;
--Training was broken into several categories, general training for
all staff then job specific training for each job type;
--The on-site trainers were in the HO to help with the conversion of
all Hearing Office Tracking Systems data to CPMS;
--The trainers remained onsite the week after training to address any
CPMS issues that arose; and
--Further support has been provided after the training was completed:
--A CPMS help desk in Falls Church is now maintained full-time;
--CPMS training manuals have been made available on the OHA's
website;
--CPMS training material is on the OHA Website;
--Continual updates are made to the training materials on the
website;
--Net meetings are conducted with HO's on the use of CPMS; and
--A series of three Interactive Video Teletraining sessions on the
use of CPMS were completed in March 2004.
No specific savings were associated with implementation of CPMS.
However, the system is an essential element for implementation of the
electronic folder process at the hearings level and will assist us in
our plan to achieve an annual productivity improvement of 2 percent.
ELECTRONIC SERVICE DELIVERY
Question. Given the focus SSA has placed on electronic service
delivery as a means of providing appropriate service to growing
workloads, how is the agency monitoring electronic service delivery use
and experience to alter and build its electronic service delivery
infrastructure in a secure and user-friendly way?
Answer. E-Government services within SSA are maturing as a service
delivery alternative to face-to-face contact, mail, and telephone.
Substantial investments in infrastructure have been made with the
expectation that electronic services will continue to grow and become a
viable, efficient channel for the delivery of SSA's services. In fiscal
year 2004, over 611,000 electronic entitlement and supporting actions,
i.e., applications, Medicare replacement cards, change of address,
etc., were processed. This represents an increase of 179 percent over
the fiscal year 2002 baseline.
Electronic services are monitored using management information
data. This data is analyzed to identify usage trends and to determine
the level of resources required for these workloads. Customer feedback
using email, surveys and telephone calls are additional ways to monitor
usage.
Customer Feedback
--We have general feedback mechanisms on most web-pages that allow
customers to send us their comments or complaints via email.
--Some on-line applications on the SSA web site also allow general
customer feedback through the use of surveys. In addition, SSA
has incorporated several American Customer Satisfaction Index
(ACSI) surveys on its web site. Sponsored by the Department of
the Treasury's Federal Consulting Group, ACSI surveys use a
standardized set of questions to measure user satisfaction.
--SSA's Office of Quality Assurance uses telephone surveys to measure
customer satisfaction with the Agency's programs, including
services available from the web site.
--SSA subscribes to demographic data services that allow us to
identify who is visiting the SSA site, from where, how long
they stay, how many pages they visit, etc. This data helps us
identify both popular and problem pages/services on the web
site, and to focus marketing of the web site and its services.
Question. What new electronic services will be supported by the
fiscal year 2006 budget and how will current services be improved to
enhance user experience and Agency efficiency?
Answer. The following services will be supported:
--SSA's Internet Change of Address application has been enhanced to
allow access through Knowledge Based Authentication in addition
to the pin/password access.
--Speech technology provides citizens with the option to use
automated telephone applications on the National 800 Number
Network to access claims, benefits and related programmatic
information.
--Last year, we completed speech-enabled automation of the
transcription process over the National 800 Number Network.
Prior to this conversion, callers left a message which was
manually transcribed by SSA employees. Now callers hear a
message confirming that their request was received and is being
processed. If the request was not successful, the caller is
directed to an agent for assistance.
--SSA's Electronic Wage Reporting initiative encourages employers to
report their employees' wages electronically rather than via
paper, magnetic tape or diskettes/CD ROMs. SSA offers online
assistance and staffs an Employer 800 Number to provide
information and technical support to employers. At least 70
percent of all W-2s will be filed electronically in fiscal year
2006, resulting in WY savings for the Agency and in more
accurate, timely postings to the Master Earnings File.
--The Electronic Special Redetermination Mailer is an approved
project in the Agency IT Systems Plan fiscal year 2005-2006.
Under this project, High Error Profile (HEP) redeterminations
will be processed using a new, expanded redetermination mailer
that will be scanned in the Office of Earnings Operations
(OEO). Mailer responses will be extracted electronically and
compared to the Supplemental Security Record, and decision
logic will be applied which clears cases or refers them for
manual review/exception resolution in OEO or the Field Offices.
Testing of the electronic special mailer is planned for April
2006 with implementation by October 2006.
--Social Security Number Verification Service (SSNVS) was recently
approved by OMB. SSA plans to begin implementation in June
2005, with full nationwide implementation in October 2005.
Employers who previously called the Employer 800 Number to
verify employee SSNs will be able to obtain that confirmation
via the Internet, instead. SSA plans extensive marketing of
electronic SSNVS, which is expected to reduce SSN verification
calls to the Employer 800 Number, verifications requested by
tape/diskette, and the processing of paper listings.
--Electronic Freedom of Information Act (EFOIA) is expected to expand
the use of the Internet to provide faster and better access to
Government services and Information. The EFOIA system will
employ technology that will automate SSA's internal FOIA
processes to substantially reduce the FOIA processing time and
allow us to respond to citizens within the legally required 20-
day timeframe. The new system will accept electronic credit
card payments and respond to requests via aggressive use of the
Internet. EFOIA is expected to reduce the OEO unit time for
FOIA actions by 20 percent effective with fiscal year 2006.
--The Microfilm/Microfiche Replacement Project was approved by the
Information Technology Advisory Board in fiscal year 2004 after
evaluation of Proof of Concept (POC) results. The processes SSA
has used to produce, store, and access microfilm/fiche data
have been among its most labor-intensive and costly.
Microfilming technology is outdated and increasingly difficult
to maintain. Online access by Operations employees from their
workstations will enable SSA to process related workloads on a
timely basis and ensure both the availability and integrity of
SSA's databases. Based on POC results, the unit time required
for employees in the PSCs, ODIO and OEO to access data will
decrease from an average of 12 minutes to an average of 2
minutes.
--W-2C Online will continue to decrease the volume of W-2 corrections
received in OEO for manual processing (examination, data entry/
balancing, microfilming, etc.).
--As part of the e-Authentication initiative of the Presidential E-
Government Initiatives, SSA has signed a Memorandum of
Understanding with GSA to implement the federated
authentication architecture with several SSA applications
through fiscal year 2006. The federated authentication
architecture will allow SSA to use the authentication of an
online customer by a trusted partner (e.g., a financial
institution whose authentication process has been certified by
GSA) to conduct business online. The federated authentication
architecture offers the potential for millions of online
customers of banks and other financial institutions to use
their existing pin/passwords to gain secure access to SSA
electronic applications, improving and simplifying user access
to our electronic applications without SSA (or any other
government agency) having to establish or maintain pin/
passwords.
--Development of the electronic folder to replace the paper
disability folder will continue with processes to speed the
request and retrieval of electronic evidence from medical,
educational, and other third parties.
--SSA is studying ways to enhance the claims process to incorporate
secure messaging with claimants as an alternative communication
approach to the more-expensive telephone and in-person
channels.
Question. What specific activities are supported in the fiscal year
2006 budget to promote the use of electronic services to employers,
covered workers and current recipients/beneficiaries?
Answer. Through our network of field office managers and Public
Affairs Specialists, we conduct ongoing outreach to raise awareness of
online services and to encourage their use. Each year, working in their
local communities, these professionals deliver speeches, submit
newspaper articles, conduct workshops, lead seminars, and conduct radio
and television interviews on all aspects of Social Security's programs,
including the benefits of doing business with us online. We include
information about our online services in all our Social Security
publications, including the Social Security Statement, which we send to
all workers age 25 and older.
We also use a variety of other tools tailored to specific target
audiences, as follows:
General Public
--An Online Services Marketing Kit, which includes:
--A Fact Sheet (also available in Spanish);
--Links to Special Places, a one-page handout that lists webpages
such as the Glossary, the Immigration page, Most Popular
Baby Names--items that draw people of all ages and
ethnicities to the site;
--A tri-fold leaflet, Apply Online for Social Security Benefits,
that answers questions about our online retirement
application;
--A one-page ``URL Handout'' that provides addresses for the online
retirement application, the Social Security Statement page,
the Benefit Planners and Social Security card information;
and
--An Internet bookmark
--800 Number on-hold messages promoting online services
--Partnerships with local libraries to distribute Social Security
Online bookmarks and conduct educational seminars
Third Parties With Clients Applying for Disability Benefits
--PowerPoint overview of the i3368PRO (Internet Adult Disability and
Work History Report)
--Instructional CD containing examples of the i3368PRO online
application screens
--``eColleague letters'' (email messages that formerly were paper-
based ``Dear Colleague'' letters) to national organizations
(advocates, attorneys, social service agencies, etc.)
--Webpage www.socialsecurity.gov/i3368prohelp that provides
background information, helpful tips, etc.
Covered workers
--Cost-of-Living Adjustment (COLA) notices sent to all beneficiaries
in January each year inviting them to visit
www.socialsecurity.gov
--Panel on homepage promoting online retirement application
--Door signs that show office hours and encourage visitors to do
business online
--Posters, tent cards, leaflets
--PowerPoint presentations
--PowerPoint overview of the i3368 (Internet Adult Disability and
Work History Report)
--Instructional CD containing examples of the online application
screens
--Draft redesign of Baby Names page to promote online retirement
planners and calculators
--800 Number on-hold messages promoting online services
Current recipients/beneficiaries
--Change of Address:
--Articles for local news outlets, organizations' house organs,
etc.
--Correspondence with people who wrote to the Commissioner, the
Congress, or the White House
--Fact Sheet
--Partnership with USPS to place a link to SSA from their homepage
--Direct Deposit:
--Partner with Fidelity to allow their online customers to set up
direct deposit of their Social Security benefits into an
eligible account
--800 Number on-hold messages promoting all online services
Employers
--Articles in SSA/IRS Reporter
--Electronic Wage Reporting CD
--Posters, pamphlets, fact sheets
--Inserts for inclusion in IRS correspondence with employers
--Seminars at national conferences, such as the IRS Tax Forums the
American Payroll Association and the National Restaurant
Association to promote online wage reporting and filing for
retirement online
--Partnerships with Chambers of Commerce across the country to
encourage small business owners to file their wage reports
online
--Partnerships with Human Resource Managers including the Society of
Human Resource Managers to encourage their employees to file
for retirement online
--CD for Human Resource Managers promoting online retirement and
providing useful tips
--Screen calendars (calendar strips that people affix to their
computer monitors)
--Survey of non-electronic filers to identify (and help us overcome)
barriers to online wage reporting
--Website covering all aspects of online wage reporting
--Toll-free call center specifically for employers with wage
reporting issues
--W2News e-mail specifically for employers discussing wage reporting
issues
Question. How much savings does SSA expect through its electronic
service delivery initiative in fiscal year 2005 and over the period
fiscal year 2004-fiscal year 2007?
Answer. Although savings have not been specifically identified for
most of these initiatives, we expect that the efficiencies gained
through implementation and expansion of these efforts will be an
essential element in our ability to reach a goal of a 2 percent annual
improvement in productivity.
BI-PARTISAN SOLVENCY EDUCATION PROGRAM
Question. Please provide the Subcommittee with additional
information related to the proposed bi-partisan solvency education
program. What resources are requested within the fiscal year 2006
budget for these activities? How does this planned level of expenditure
compare with fiscal years 1999-2004?
Answer. Among the many services provided by the Social Security
Administration is educating the American public about the programs and
finances of Social Security. One of the stated objectives in our Agency
Strategic Plan is: ``Through education and research efforts, support
reforms to ensure sustainable solvency and more responsive retirement
and disability programs.'' No specific amount was included in SSA's
fiscal year 2006 budget request for solvency education. As in prior
years, this effort is part of the ongoing educational program conducted
by SSA to educate the public about the Social Security program,
including the financing challenges facing them, through our ongoing
communication efforts. As the national discussion continues on how best
to strengthen Social Security for the future, we will work to continue
to ensure that policymakers and the public have the information needed
to assess the implications of all proposals under consideration.
Messages about the current status of the Trust Funds, as described
in the Annual Report of the Board of Trustees of the Federal Old-Age
and Survivors Insurance and Disability Insurance Trust Funds are
included in a number of our public information resources, including:
--On our website--www.socialsecurity.gov;
--In our publications--``The Future of Social Security'' and
``Understanding The Benefits'' pamphlets;
--In the annual Social Security Statement mailed to all workers age
25 and older not currently receiving benefits; and
--When appropriate, as part of the presentation by our Agency
communicators when speaking to groups and organizations.
SOCIAL SECURITY EARNINGS
Question. Each year approximately nine million wage records cannot
be reconciled due to a mismatch associated with the name or Social
Security Number of a person. According to the Inspector General of the
Social Security Administration, as of July 2002, the Earnings Suspense
File contained 236 million wage items totaling roughly $374 billion. Of
these amounts, roughly 80 million items worth $13 billion are more than
30 years old. What activities are proposed in the fiscal year 2006
budget to update the records of wage earners whose current or future
social security benefits would be lower than provided under current law
due to processing mismatches? What steps are being taken to ensure that
earnings are posted to the correct social security number upon initial
submission and how does the fiscal year 2006 budget support these
actions?
Answer. In fiscal year 2003, SSA began developing new matching
software to associate earnings items in the Earnings Suspense File
(ESF) with the correct individual master earnings file. The new
routines use data housed on the ESF, enumeration records, benefit
records and earnings records to confirm that the correct earnings
records were identified. In fiscal year 2003 and 2004, SSA removed
about 10 million items from the ESF and posted them to the correct
earnings records for tax years 1937 through 2000. In fiscal year 2005,
we are continuing to expand our new software and are focusing on tax
year 2001. The improvements will also be used to remove additional ESF
items for years prior to 2001.
To prevent future earnings from going into the ESF, SSA works with
employers to provide tools to allow them to determine if they have a
name/Social Security number (SSN) mismatch on their payroll records
prior to sending W-2s to SSA for processing. SSA provides a free
Employee Verification Service where an employer can verify if a name
and SSN match. SSA has piloted an Internet-based version of this
service, the Social Security Number Verification Service (SSNVS). SSA
anticipates offering this free Internet-based service to all employers.
SSNVS allows an employer to verify up to ten names/SSNs at a time
with SSA over the Internet while receiving a response within seconds.
In addition, an employer may submit a file over the Internet of up to
250,000 names/SSNs and receive a response on the next business day.
LEGISLATIVE PROPOSAL--SSI DISABILITY CLAIMS
Question. The fiscal year 2006 budget request includes a
legislative proposal that would require SSA to review at least 50
percent of favorable decisions for adult SSI disability claims before
starting payments. What are the administrative costs of this proposal
in fiscal year 2006, and are these costs requested within the LAE
account? What are the anticipated programmatic savings from this
proposal?
Answer. Under current law, SSA reviews at least 50 percent of all
Title II initial disability allowances made by State agencies on behalf
of SSA. The budget proposal would apply the same requirement for adult
disability allowances in the SSI program. When fully phased in, 50
percent of initial SSI disability allowances would be reviewed.
The administrative costs in fiscal year 2006 are estimated to be
about 45 workyears and $6 million which would be absorbed under the LAE
account if the legislation is enacted.
The estimated program savings to general revenues of the
preeffectuation proposal in the budget are about $493 million over 10
years in the SSI program alone. Additional Medicaid savings from the
proposal over 10 years are estimated to be about $639 million.
SOCIAL SECURITY PROTECTION ACT
Question. According to the ``Justification of Estimates for
Appropriations Committees'' for the fiscal year 2006 budget request,
the LAE account includes resources needed to implement the Social
Security Protection Act. How much funding is required to implement each
activity required by the Act?
Answer. There are fifty-one sections of the SSPA enacted March 2,
2004. The fiscal year 2006 administrative budget includes $14.7
million, and 211 workyears (WYs), to fund the following provisions:
--Expanding numbers of onsite representative payee reviews the Agency
will need to conduct under Section 102(b).
--Processing suspensions of Title II benefits to persons fleeing
prosecution, custody, or confinement, and/or those violating
probation or parole as provided in Section 203. This section
extends fugitive felon provisions currently applied to Title
XVI beneficiaries to Title II beneficiaries.
--Issuing receipts to acknowledge submission of reports of changes in
work or earnings status of disabled beneficiaries as provided
in Section 202.
The SSPA also authorizes attorney fees to be paid directly out of
individuals' retroactive SSI benefits to the same extent and under the
same processes as currently are in place for deducting attorney fees
from retroactive OASDI benefits (Section 302). Additionally, it
requires SSA to test the impact of establishing a fee payment process
for non-attorney representatives that is similar to the current one for
attorneys (Section 303).
RAILROAD RETIREMENT BOARD
Prepared Statement of Michael S. Schwartz, Chairman
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 2006 budget request.
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. During fiscal year
2004, the RRB paid $9 billion in retirement/survivor benefits to about
649,000 beneficiaries, and $83 million in unemployment/sickness
insurance benefits to about 34,000 claimants.
We are respectfully requesting a total agency budget of
$103,398,240 in fiscal year 2006. This total includes $102,543,040 for
ongoing agency operations, which is the same as the amount included in
the President's proposed budget for the year. In addition, we are
requesting $855,200 for critical elements of the RRB's Enterprise
Architecture Capital Asset Plan.
ADMINISTRATIVE FUNDING ISSUES
The President's proposed budget would provide the same level of
funding for the RRB's administrative expenses in fiscal year 2006 as
the amount appropriated for fiscal year 2005. To operate at this level,
RRB staffing has been significantly reduced. Early this fiscal year, 77
employees were separated from the agency through a program of voluntary
separation incentives, and since that time, new hiring has been
severely restricted. The agency's funded staffing level for fiscal year
2005 is currently 76 full-time equivalent staff years (about 7.3
percent) lower than fiscal year 2004.
Continuation of the same funding level from fiscal year 2005 to
2006 would effectively require the RRB to absorb all fiscal year 2006
cost increases for the goods and services required to administer the
railroad retirement/survivor and unemployment/sickness insurance
benefit programs. These rising costs include the January 2006 pay
increase for the agency's employees, which would total approximately
$1.61 million at the currently estimated rate of 2.6 percent.
Under current law, the cost increases would require further cuts in
agency staffing, because nearly 80 percent of the RRB's budget is used
for employees' salaries and benefits. We estimate that the President's
proposed budget would provide sufficient funding for a staffing level
of 931 FTE's, which is 41 FTE's less than we expect to use in fiscal
year 2005. In order to reach this level, we would need to conduct a
reduction-in-force of about 18 employees at an estimated cost of
$233,000.
NONGOVERNMENTAL DISBURSEMENT AGENT
The President's proposed budget assumes that the RRB will contract
with a nongovernmental agent for disbursement services, as provided
under Section 107(e) of the Railroad Retirement and Survivors'
Improvement Act of 2001 (Public Law 107-90). However, initial market
research has indicated that the cost of doing so would be about three
times the cost of having similar services provided by the Department of
the Treasury. In addition, our Inspector General has questioned whether
certain services provided by the Department of the Treasury, such as
reclamations, would be provided as effectively by a nongovernmental
disbursement agent.
We have concluded that outsourcing this function would be
inconsistent with the President's policy of outsourcing only where the
government would save costs. For fiscal year 2005, the Congress added
language to our appropriations bill prohibiting this transfer: Section
516 of the Departments of Labor, Health and Human Services, and
Education, and Related Agencies Appropriations Act, 2005 provides that
none of the funds appropriated under the Act are to be used to contract
with a nongovernmental disbursement agent. The RRB also submitted
separate legislation to address this issue during the previous
Congress, and we plan to again submit legislation on the subject during
this Congress.
Current estimates indicate that the cost of contracting with a
nongovernmental disbursement agent would be in excess of $3 million for
the first year and $2.3 million in subsequent years. By comparison, the
annual cost of having these services provided by the Department of the
Treasury is about $800,000. Enactment of legislation to remove this
requirement would provide sufficient savings in fiscal year 2006 to
enable the RRB to cover essential operating costs at the proposed
budget level.
ENTERPRISE ARCHITECTURE CAPITAL ASSET PLAN
Our budget request includes funding for a key element of the RRB's
Enterprise Architecture Capital Asset Plan, which addresses the major
initiatives needed to implement the agency's target enterprise
architecture. This request is highlighted separately because of its
significance to the long-term, continued viability of agency programs,
and the realization that movement toward the desired target
architecture will be a multi-year effort involving special funding
needs. We are requesting an additional $855,200 in fiscal year 2006 to
continue with an initiative to convert our processing systems to a
relational database management system.
Gartner Consulting recommended that we investigate alternatives for
our Computer Associates' Integrated Database Management System (IDMS)
and prepare to actively retire the platform beyond 2006. The RRB's day-
to-day operations are heavily dependent on application systems that are
based on IDMS technology. Delaying the database management system
conversion would create a high risk of loss for these systems, which
would compromise the agency's ability to pay benefits and fulfill its
mission in the future. For this reason, we have already begun project
development for this initiative. We are currently developing
specifications for contractual assistance, and we expect to release a
request for proposals later in fiscal year 2005. Preliminary estimates
indicate that a full conversion might be accomplished within 12 to 18
months, although our schedule will depend on the availability of
resources.
In addition to the requests for administrative expenses, the
Administration's budget includes $97 million to fund the continuing
phase-out of vested dual benefits, and $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
(NRRIT), which was established by the Railroad Retirement and
Survivors' Improvement Act of 2001 to manage and invest railroad
retirement assets. The RRB transferred $586 million to the NRRIT in
fiscal year 2004. This amount is in addition to the $19.188 billion and
$1.502 billion transferred in fiscal years 2003 and 2002, respectively.
In fiscal year 2004, the NRRIT transferred $1.564 billion to the RRB
for the payment of tier 2 benefits.
In June 2004, we released the annual report on the railroad
retirement system required by Section 22 of the Railroad Retirement Act
of 1974, and Section 502 of the Railroad Retirement Solvency Act of
1983. The report, which reflects changes in benefit and financing
provisions under the Railroad Retirement and Survivors' Improvement Act
of 2001, addresses the 25-year period 2004-2028 and contains generally
favorable information concerning railroad retirement financing. The
report included projections of the status of the retirement trust funds
under three employment assumptions. These indicated cash flow problems
only under a pessimistic employment assumption, and then not until
calendar year 2026. This is 4 years later than in the previous year's
report.
Railroad Unemployment Insurance Accounts.--The equity balance of
the railroad unemployment insurance accounts at the end of fiscal year
2004 was $87.5 million, an increase of $36 million from the previous
year. The RRB's latest annual report on the financial status of the
railroad unemployment insurance system, issued in June 2004, was
generally favorable. The report indicated that even as maximum daily
benefit rates rise 35 percent (from $55 to $74) from 2003 to 2014,
experience-based contribution rates are expected to keep the
unemployment insurance system solvent. No loans are anticipated even
under our most pessimistic assumption. The average employer
contribution rate remains well below the maximum throughout the
projection period, but a 1.5 percent surcharge is now in effect and is
expected for calendar year 2006 and probably 2007. We did not recommend
any financing changes based on this report.
In conclusion, we want to stress the RRB's continuing commitment to
improving our operations and providing quality service to our
beneficiaries. We recognize that fiscal year 2006 will be a tight
budget year throughout the Federal government, and our budget request
reflects our continued commitment to contain the RRB's administrative
costs accordingly. 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.
______
Prepared Statement of Martin J. Dickman, Inspector General
Mr. Chairman and Members of the Subcommittee: My name is Martin J.
Dickman, Inspector General of the Railroad Retirement Board (RRB). I
would like to thank you, Mr. Chairman, and the members of the committee
for your continued support for the Office of Inspector General. I wish
to describe our fiscal year 2006 appropriations request and our planned
activities.
The Office of Inspector General requests funding of $7,195,968 to
ensure the continuation of its independent oversight of the RRB. The
agency is responsible for managing benefit programs which paid $9
billion in retirement and survivor benefits to approximately 649,000
beneficiaries in fiscal year 2004 and an additional $83 million in net
railroad unemployment and sickness insurance benefits to 32,000
claimants. The RRB also administers Medicare Part B, the physician
services aspect of the Medicare program, for qualified railroad
retirement beneficiaries. Through this program, approximately $923
million in annual Medicare benefits are paid to approximately 551,000
beneficiaries.
In fiscal year 2005, the Office of Inspector General will continue
to concentrate its efforts on the performance of reviews of significant
policy issues and program operational areas. We will coordinate our
efforts with agency management to identify and eliminate operational
weaknesses. We will also continue our investigation of allegations of
fraud, waste and abuse, and refer cases for prosecution and monetary
recovery action.
We also request the removal of the prohibition on the use of
appropriated funds for any audit, investigation or review of the
Railroad Medicare program. The RRB manages a nationwide contract for
processing Medicare Part B claims for railroad beneficiaries. The
agency is responsible for the enrollment of beneficiaries, premium
collection, answering beneficiary inquiries and conducting the annual
Carrier Performance Evaluation for the Medicare carrier.
The prohibition does not permit the OIG to fulfill its statutory
oversight responsibilities for a major agency program. The prohibition
is contrary to Federal government priorities to reduce fraud in one of
the largest Federal programs.
We also request oversight authority to conduct audits and
investigations of the National Railroad Retirement Investment Trust
(NRRIT), the body responsible for the investment of approximately $27
billion in trust funds used to support Railroad Retirement Act benefit
programs. This office would ensure sufficient reporting mechanisms are
in place and assess if the NRRIT members are fulfilling their fiduciary
responsibilities. We have repeatedly expressed concerns about RRB
management's passive relationship with the NRRIT, and identified the
issue as a serious challenge for the RRB.
The OIG currently is required to reimburse the agency for office
space, equipment, communications, office supplies, maintenance and
administrative services. We are the only Federal OIG that cannot
negotiate a service level agreement with its parent agency. We,
therefore, request that the language in appropriation law be removed.
OFFICE OF AUDIT
Auditors will perform the audit of the RRB's 2005 financial
statements and preliminary work for the 2006 financial statements to
ensure the issuance of reliable financial information. The OIG will
obtain the services of a consulting actuary to audit the statement of
social insurance.
Audit staff will work with agency management to ensure detailed and
verifiable financial information is available from the National
Railroad Retirement Investment Trust (NRRIT). As discussed above, we
believe RRB management should take a more active interest in NRRIT
activities.
They will conduct the annual evaluation of the RRB's information
systems security to meet the requirements of the Federal Information
Security Management Act of 2002. We will also monitor the agency's
information systems operations to determine if the agency is meeting
the goals established in its Strategic Information Resources Management
Plan and to ensure the agency is in compliance with the provisions of
the Information Technology Management Reform Act.
Auditors will continue to monitor agency actions to address
security deficiencies and complete corrective actions. They will ensure
that network and system security safeguards are in place to protect the
confidentiality of sensitive financial and personal information.
Auditors will also perform assessments of the agency's e-government
initiatives to identify and eliminate system vulnerabilities, and to
ensure compliance with the E-Government Act of 2002. We will continue
our monitoring efforts of the RRB's document imaging activities and the
expansion of paperless processing to ensure the integrity of records.
Auditors will continue to review RRB benefit processes and
procedures to identify ways to reduce administrative and adjudicative
errors. They will offer recommendations to strengthen the agency's debt
collection program to reduce the outstanding receivables.
OFFICE OF INVESTIGATIONS
The Office of Investigations (OI) identifies, investigates and
presents cases for prosecution, throughout the United States,
concerning fraud in RRB benefit programs. In fiscal year 2006, OI will
continue to focus its resources on the investigation of cases with the
highest fraud losses. OI currently has approximately 500 active
investigations involving fraudulent benefit payments and fraudulent
reporting with fraud losses of approximately $11 million. These cases
involve all RRB programs that provide sickness and unemployment
insurance benefits to injured or unemployed workers, retirement
benefits, and disability benefits for workers who are disabled.
We will continue our efforts with program managers to address
weaknesses in agency programs that allow fraudulent activity to occur,
and will recommend changes to ensure program integrity.
We will concentrate our resources on cases with the highest fraud
losses, those related to the RRB's retirement and disability programs
as well as fraudulent reporting by railroad employers. OI will dedicate
considerable resources to the investigation of nationwide schemes to
defraud the RRB disability program. Disability cases currently
constitute about 40 percent of our investigative caseload. These cases
involve more complicated schemes and result in the recovery of
substantial funds for the agency's trust funds.
In fiscal year 2006, we will continue to use the Department of
Justice Affirmative Civil Enforcement (ACE) program for those cases
which do not meet the criminal guidelines of U.S. Attorneys. Through
this program, we are able to obtain civil judgements and recover trust
fund monies for the RRB.
SUMMARY
In fiscal year 2006, the Office of Inspector General will continue
to focus its resources on the review and improvement of RRB program
operations and ensuring the integrity of agency trust funds. We will
also continue to aggressively pursue individuals who engage in
activities to fraudulently obtain RRB funds.
NONDEPARTMENTAL WITNESSES
[Clerk's note.--The subcommittee was unable to hold
hearings on nondepartmental witnesses. The statements and
letters of those submitting written testimony are as follows:]
DEPARTMENT OF LABOR
Prepared Statement of Motivation, Education and Training, Inc.
Honorable Chairman, Senator Arlen Specter, and Honorable Committee
Members: It is with sincere appreciation that I convey our gratitude
for your efforts on behalf of all hard working Americans, and for
granting us the opportunity to share information about the nation's
migrant and seasonal agricultural workers and the importance of the
National Farmworker Jobs Program.
I am the executive director of Motivation Education & Training,
Inc. (MET), the authorized National Farmworker Jobs Program (NFJP)
operator in Louisiana, Minnesota, North Dakota, and Texas, which are
all funded through Section 167 of the Workforce Investment Act (WIA).
MET is a community-based organization headquartered near Houston,
Texas, and has been actively engaged serving low-income populations and
communities for almost four decades.
Since the 1960s, the affirmative efforts of both Congress and
various Presidential Administrations have created and preserved a
modest, though vital, system to aid farmworkers and their family
members who seek improved economic prospects through career training
and stabilization services. As you may know, a typical American
agricultural worker faces some of the harshest working conditions in
the United States, and yet their compensation is neither commensurate
with the risks taken, nor sufficient for the work performed. During the
most recently completed Program Year, MET served more than 3,000
migrant and seasonal farmworkers with reported average annual earnings
of $5,855 per client. Despite this shockingly low income, very few
farmworkers, only 6.3 percent, seek and receive public assistance,
preferring instead the path of self-reliance and an extremely meager
existence.
Uncertainty, which is inherent in the agricultural economy, ensures
the perpetuation of a cruel paradox wherein extended periods of
joblessness due to lack of available work, are interspersed with
fleeting spikes in labor demand as crops mature or weather conditions
permit activity in the fields. The long distances that many farmworkers
and their families travel represents the desperate tradeoff between the
mere hope of income and the likelihood that any semblance of stability
can be achieved and maintained. But members of this community face
severe challenges when seeking to exercise other career options, and
for many families, reliance on agriculture is passed along from one
generation to the next, thus ensuring the inheritance of work,
subsistence, and poverty for decades to come.
Historically, migrant and seasonal farmworkers have had relatively
limited access to the public workforce investment system. A number of
factors have worked in concert to discourage their participation, and
even in the recently expanded One-Stop network, farmworkers can expect
little assistance outside of the local systems where NFJP programs
consistently offer high caliber career development and stabilization
services. Yet despite both the need for the program and the phenomenal
performance of the NFJP with respect to all other workforce investment
programs, the current leadership at the US Department of Labor fails to
see any value in preserving this most basic form of individual, family,
and community economic development. Though duly authorized in WIA we
now face the regular threat of elimination, but MET and our partners
across the country continue to strive for better employment options for
farmworkers and increased earnings that can move families out of
poverty and into progressively higher tiers of economic stability and
security.
Within the last year, a series of DOL-sponsored community forums in
three regions of the country reinforced the necessity of preservation
of the NFJP. The dialogues brought together local workforce boards,
local and regional One-Stop partners, state agencies, federal
stakeholders, and NFJP representatives in a setting that encouraged
analysis and discussion related to improved One-Stop access for migrant
and seasonal farmworkers. The forum in Texas that I attended primarily
served as the central U.S. regional dialogue, and ultimately delivered
two resounding messages: (1) preservation of the NFJP is crucial if
farmworker clients can expect any type of appropriate workforce
investment service; (2) expanded farmworker access to the One-Stop
system is an improbable, if not impossible, prospect in the absence of
the NFJP or a substantially similar nationally-administered initiative.
Workforce board representatives affirmed the necessity of our
experienced and capable administration of workforce investment services
for migrant and seasonal farmworkers. Citing the complexity of the
challenge that farmworker clients represent to the general system's
core, intensive, and training delivery operations, as well as our
singular expertise in working with these constituents, boards and other
key stakeholders candidly expressed their concerns about some of the
limitations within the evolving One-Stop system. I did not hear one
dialogue participant state, suggest, or even imply that passing
responsibility to the states and local boards would do anything except
dramatically reduce farmworker access to public workforce services.
A reasonable evaluation of NFJP performance clearly places this
critical workforce component in the highest echelon of WIA authorized
partners, achieving better results than programs that receive
substantially more funds per client, as well as those serving
populations that are better equipped than farmworkers upon program
entry to secure sustainable employment. We work hard to place our
clients in permanent positions that will afford an opportunity for
consistent long-term upward mobility, and that provide compensation
packages consistent with the needs of today's families. Few jobs are
permanent in the strictest sense, and given the nature of the evolving
global economy, an individual's ability to acquire and retain
employment is only as promising as that person's capacity to satisfy
emerging skill demands and their facility in utilizing available
resources to promote their employment. Without the individual attention
and highly intensive case management intervention that is available to
farmworkers only through the NFJP, most of this population would be
unable to matriculate or complete a workforce development training
program of the type necessary to secure and retain higher wage and
higher skill employment.
Belt-tightening and budget reductions are inevitable considerations
in light of the current federal revenue shortfall; however, we would do
immeasurable injustice to a worthy few and an extreme disservice to our
national character if, in our attempt to reduce expenditures, we place
a heavier load on the backs of our already overburdened and less
fortunate citizens. I would respectfully request your favorable
consideration of full restoration for the NFJP in fiscal year 2006, and
if that proves altogether too ambitious, at least the maintenance of
current federal support for this crucial component in the struggle for
economic self-sufficiency among the poorest of America's workers.
______
Prepared Statement of the National Association of Home Builders
On behalf of the more than 220,000 members of the National
Association of Home Builders (NAHB), as well as our workforce
development arm, the Home Builders Institute (HBI), we thank you for
the opportunity to submit this statement for the record on the
Responsible Reintegration of Youth Offenders program, and the Prisoner
Re-entry Program.
NAHB members are involved in home building, remodeling, multifamily
construction, property management, subcontracting, design, housing
finance, building product manufacturing and other aspects of
residential and light commercial construction. Known as ``the voice of
the housing industry,'' NAHB is affiliated with more than 800 state and
local home builder associations around the country. NAHB's builder
members will construct about 80 percent of the more than 1.6 million
new housing units projected for 2005, making the housing industry one
of the largest engines of economic growth in the country, and vital to
the nation's overall economic growth and prosperity.
Throughout the past two decades, one of the most pressing problems
confronting our industry has been a shortage of skilled workers. Record
numbers in the construction of new homes, retirements and lackluster
interest in the construction trades by younger generations, compounded
by insufficient training opportunities for those interested in
construction, are among the many factors contributing to the shortages.
According to the Bureau of Labor Statistics, some 240,000 workers are
needed each year to meet the nation's demand for housing, and they
anticipate that over 1 million new jobs in the residential construction
industry will be created in the next decade as builders attempt to keep
up with demand for affordable housing.
HOME BUILDERS INSTITUTE (HBI) PROGRAM BACKGROUND
Each year, the Home Builders Institute (HBI) works through various
programs to train and place several hundred youth in residential
construction jobs. Through real-life, hands-on training, some of our
nation's most at-risk young people, learn a skill, and earn a second
chance at a productive and successful life and career. Since 1994, HBI
has focused a significant portion of its effort and resources on one
particular targeted population, adjudicated youth, through its Project
CRAFT (Community Restitution Apprenticeship-Focused Training) program.
Piloted in 1994 through a Department of Labor demonstration grant,
Project CRAFT is targeted solely to adjudicated youth and youthful
offenders. This program has successfully combined employers, the
juvenile justice system, workforce development and other systems, in
one overall approach, and has since been implemented at 15 sites in ten
states (Colorado, Ohio, Florida, Maryland, Mississippi, New Jersey,
North Dakota, South Carolina, Tennessee, and Texas). Funding for HBI's
implementation of this program in the state of Tennessee has come
largely through funds provided under the Responsible Reintegration of
Youth Offenders budget line.
Project CRAFT incorporates the apprenticeship concept of hands-on
training and academic instruction, utilizing its Pre-Apprenticeship
Certificate Training (PACT), numeracy, literacy and employability
skills curricula. Under the supervision of journey-level trade
instructors, students learn residential construction skills while
completing community service construction projects. Nearly 85 percent
of Project CRAFT graduates achieve success through industry jobs each
year.
Since 1994, Project CRAFT has helped more than 2,000 high-risk
youth, and in addition to offering adjudicated youth trade skills and
job placement, community service projects by students saved taxpayers
nearly $400,000 in labor costs in 2003-2004 alone. During 2003-2004,
Project CRAFT graduates were placed in jobs with an average wage of
$8.58/hour and graduates performed over 49,000 hours of community
service as part of their programs. Recidivism rates for Project CRAFT
have averaged between 10-15 percent, an impressive rate when compared
to the national average of over 50 percent. Additionally, students in
the program tend to evidence one grade level of improvement in math and
language skills attributable largely to the formal education component
that includes contextual learning. Math and communication skills are
continually reinforced as students are challenged to apply these skills
to everyday situations in the field and in the classroom.
Project CRAFT efforts were recognized by the Department of Labor
and the National Youth Employment Coalition when in September 2002, the
program received a PEPNet (Promising and Effective Practices Network)
Award. We are also grateful to the Senate Subcommittee on Labor, Health
and Human Services and Education for its acknowledgement of Project
CRAFT in fiscal year 2005 Report Language, as well as Congress' years
of dedicated support for the Responsible Reintegration of Youth
Offenders program.
RESPONSIBLE REINTEGRATION OF YOUTH OFFENDERS PROGRAM
NAHB and HBI's encouraging experience with Project CRAFT is an
example of the enormous success of the Responsible Reintegration of
Youth Offenders pilot program, and the reason why we very strongly
support the continuation of funding for a youth-focused program
targeting adjudicated youth with training that provides this at-risk
population with important job- and life-skills. The Responsible
Reintegration of Youth Offenders Program has helped to bring together
industry and government in a partnership with tangible positive
outcomes. Since 1994 the program has earned a reputation as a
worthwhile investment of taxpayer dollars, a significant and important
resource to the nation's building industry, and a major contributor to
the future success of thousands of young people. It is a demonstration
model that works, and as such deserves to be touted and replicated. We
hope that its proven success and recognition as an effective
intervention will help enable it to receive continued funding, whether
through a stand-alone program, or as part of a youth-focused component
of the Prisoner Re-entry Program.
PRISONER RE-ENTRY PROGRAM
In its fiscal year 2006 budget proposal, the administration
proposes to fund the Prisoner Re-entry Program through appropriations
to three federal departments (Department of Labor, $35 million;
Department of Justice $15 million, Department of Housing and Urban
Development, $25 million.) We hope this joint funding level will
provide more opportunities to train the nation's at-risk youth. The
Prisoner Re-entry Program continues to focus on ``helping individuals
exiting prison make a successful transition to community life and long-
term employment'' through programs to help ex-offenders find and keep
employment, obtain housing, and take advantage of mentoring programs.
NAHB and HBI support the goals of the Prisoner Re-entry program,
and agree that there is enormous potential for successful programming
targeting ex-offenders. NAHB and HBI continue to believe that an
important targeted community within the Prisoner Re-entry program must
be adjudicated juveniles and we support extending Prisoner Re-entry
program eligibility to adjudicated juveniles and youthful offenders
ages 16-24, in addition to other age groups served by the program. We
have found that these young people in particular are energetic,
interested and engaged in learning the skills taught through our
Project CRAFT program. We believe that any funding targeted to training
those who are re-entering society must include a component targeted to
the youth offender population.
As we have stated, the Prisoner Re-entry program has significant
potential for helping the adult offender community receive important
training and job skills. And we believe that HBI is well-positioned to
participate in an adult-focused program through its Project TRADE
(Training, Restitution, Apprenticeship, Development and Education)
program--which is the sister program to the youth-focused Project
CRAFT. Designed to train and place adult offenders in employment in the
home building industry, TRADE is currently being implemented in
Colorado Springs and Sheridan, Ill. Project TRADE has trained over 500
adult offenders in the residential construction trade since 1995
through programs in Maryland, North Carolina, North Dakota, Oregon,
Pennsylvania, Washington, Tennessee, Colorado and Illinois. We believe
that Project TRADE's emphasis on adults complements the work done by
Project CRAFT with younger offenders.
CONCLUSION
NAHB and HBI continue to strongly support the goals of the
Responsible Reintegration of Youth Offenders program. We also support
the Department of Labor's interest in targeting a program to ex-
offenders and adjudicated individuals through the Prisoner Re-entry
program, and we very strongly support the inclusion of youth offenders
and adjudicated juveniles in this initiative.
We believe that the Responsible Reintegration of Youth Offenders
demonstration program has been highly successful, as evidenced by our
own accomplishments with Project CRAFT. We fervently hope that any
proposal supported by congressional appropriators will take into
account the needs of both the youth and adult ex-offender populations,
and will clearly lay out congressional intent to continue serving the
youth ex-offender population.
Again, we thank the subcommittee for this opportunity to share our
views on the Responsible Reintegration of Youth Offenders program, and
Prisoner Re-entry Initiative. We look forward to working with you to
promote training programs that help America's at-risk youth acquire the
skills they need for successful and productive careers in the home
building industry.
______
Prepared Statement of the National Coalition for Homeless Veterans
INTRODUCTION
The National Coalition for Homeless Veterans appreciates the
opportunity to submit recommendations on fiscal year 2006
appropriations for and program management issues related to the U.S.
Department of Labor (DOL).
The National Coalition for Homeless Veterans (NCHV), established in
1990, is a nonprofit organization with the mission of ending
homelessness among veterans by shaping public policy, promoting
collaboration, and building the capacity of service providers. NCHV's
nearly 250 member organizations in 46 states and the District of
Columbia provide housing and supportive services to homeless veterans
and their families, such as street outreach, drop-in centers, emergency
shelter, transitional housing, permanent housing, recuperative care,
hospice care, food and clothing, primary health care, addiction and
mental health services, employment supports, educational assistance,
legal aid and benefit advocacy.
More than 250,000 veterans are homeless on any given night; more
than 500,000 experience homelessness over the course of a year.
Conservatively, one of every three homeless adult males sleeping in a
doorway, alley, box, car, barn or other location not fit for human
habitation in our urban, suburban, and rural communities has served our
nation in the Armed Forces. Homeless veterans are mostly males (2
percent are females). 54 percent are people of color. The vast majority
are single, although service providers are reporting an increased
number of veterans with children seeking their assistance. 45 percent
have a mental illness. 50 percent have an addiction.
America's homeless veterans have served in World War II, Korea, the
Cold War, Vietnam, Grenada, Panama, Lebanon, anti-drug cultivation
efforts in South America, Afghanistan, and Iraq. 47 percent of homeless
veterans served during the Vietnam Era. More than 67 percent served our
nation for at least three years and 33 percent were stationed in a war
zone.
Male veterans are twice as likely to become homeless as their non-
veteran counterparts, and female veterans are about four times as
likely to become homeless as their non-veteran counterparts. Like their
non-veteran counterparts, veterans are at high risk of homelessness due
to extremely low or no income, dismal living conditions in cheap hotels
or in overcrowded or substandard housing, and lack of access to health
care. In addition to these shared factors, a large number of at-risk
veterans live with post traumatic stress disorders and addictions
acquired during or exacerbated by their military service. In addition,
their family and social networks are fractured due to lengthy periods
away from their communities of origin. These problems are directly
traceable to their experience in military service or to their return to
civilian society without appropriate transitional supports.
Contrary to the perceptions that our nation's veterans are well-
supported, in fact many go without the services they require and are
eligible to receive. One and a half million veterans have incomes that
fall below the federal poverty level. Neither the VA, state or county
departments of veteran affairs, nor community-based and faith-based
service providers are adequately resourced to respond to these
veterans' health, housing, and supportive services needs. The VA plays
only a limited role in providing employment services to veterans,
administering just one small supported employment program for veterans
with serious disabilities.
The U.S. Department of Labor and state and local workforce agencies
bear primary responsibility for ensuring that veterans are provided
opportunities to prepare for and obtain productive employment.
Accordingly, we urge Congress to provide full funding for the programs
of the Department of Labor Veterans Employment and Training Service
(VETS) in order to ensure that our nation's workforce services system
is equipped to fulfill their obligations to our nation's veterans.
FISCAL YEAR 2006 APPROPRIATION RECOMMENDATION--HOMELESS VETERAN
REINTEGRATION PROGRAM
The Homeless Veterans Reintegration Program (HVRP), within the
Department of Labor's Veterans Employment and Training Service (VETS),
provides competitive grants to community-based, faith-based, and public
organizations to offer outreach, job placement and supportive services
to homeless veterans. HVRP is the primary employment services program
accessible by homeless veterans and the only targeted employment
program for any homeless subpopulation. Homeless veterans have many
additional barriers to employment than non-homeless veterans due to
their lack of housing. HVRP grantees remove those barriers through
specialized supports unavailable through other employment services
programs. Grantees are able to place HVRP participants into employment
for $2,100 per placement, a tiny investment for moving a veteran out of
homelessness, and off of dependency on public programs.
DOL estimates that 14,750 homeless veterans will be served through
HVRP at the fiscal year 2005 appropriation level of $21 million. This
figure represents just three percent of the overall homeless veteran
population, which the Department of Veterans Affairs estimates numbers
more than 500,000 over the course of a year. An appropriation at the
authorized level of $50 million would enable HVRP grantees to reach
approximately 24,000 homeless veterans.
Additionally, HVRP is being used as the account to fund a joint
Department of Labor and Department of Veterans Affairs initiative
authorized by Congress to assist veterans incarcerated in their reentry
to the community. This decision essentially adds a new purpose to the
HVRP program, for which additional funds are needed.
We urge Congress to appropriate at least $50 million for HVRP in
fiscal year 2006 Labor-HHS-Education appropriations legislation.
FUNDING FOR HOMELESS VETERANS REINTEGRATION PROGRAM
[In millions of dollars]
------------------------------------------------------------------------
Fiscal year Amount
------------------------------------------------------------------------
2004....................................................... 19
2005....................................................... 20.8
2006--Administration....................................... 22
2006--NCHV................................................. 50
------------------------------------------------------------------------
FISCAL YEAR 2006 APPROPRIATION RECOMMENDATION--VETERANS WORKFORCE
INVESTMENT PROGRAM
The Veterans Workforce Investment Program (VWIP), within the
Department of Labor's Veterans Employment and Training Service (VETS),
provides grants to states and community-based, faith-based, and local
public organizations to offer workforce services targeted to veterans
with service connected disabilities, with active duty experience in a
war or campaign, recently separated from the service, or facing
significant barriers to employment (including homelessness). At least
80 percent of total VWIP funds are distributed via competition. VETS
may reserve 20 percent of total VWIP funds for discretionary grants.
VETS uses these discretionary funds for studies, demonstration
projects, and additional funding to supplement competitive grants. The
fiscal year 2005 appropriation for VWIP is $8.5 million.
Both those agencies that receive VWIP funds and those hoping to
apply face the problem of resource scarcity. Due to funding
limitations, agencies and organizations in less than half of states
receive VWIP funds. The need for the type of targeted assistance that
VWIP offers is clearly needed by veterans in all states. Additionally,
caps on the size of grant awards make it difficult for existing
grantees to recruit and retain staff. This limits program effectiveness
and the collaborative process. Sadly, the President's fiscal year 2006
request is a step backward, reversing the one million increase that
Congress appropriated just last year.
We urge Congress to appropriate at least $33.5 million for VWIP in
fiscal year 2006 Labor-HHS-Education appropriations legislation.
FUNDING FOR VETERANS WORKFORCE INVESTMENT PROGRAM
[In millions of dollars]
------------------------------------------------------------------------
Fiscal year Amount
------------------------------------------------------------------------
2004....................................................... 7.5
2005....................................................... 8.5
2006--Administration....................................... 7.5
2006--NCHV................................................. 33.5
------------------------------------------------------------------------
CONCLUSION
NCHV appreciates the opportunity to submit recommendations to
Congress regarding the resources and activities of the U.S. Department
of Labor. We look forward to continuing to work with the Appropriations
Committee in ensuring that our federal government does everything
within its grasp to prevent and end homelessness among our nation's
veterans. They have served our nation well. It is beyond time for us to
repay the debt.
______
Prepared Statement of the Opportunities Industrialization Center of
Washington
Honorable Chairman Specter and members of the Subcommittee:
Opportunities Industrialization Center of Washington (OIC) has been
providing employment and training, educational, nutritional and other
community services in Central Washington for over 34 years. Since July
of 1999, we have been the U.S. Department of Labor National Farmworker
Jobs Program (NFJP) grantee for the state of Washington. Agriculture is
one of Washington State's principal industries; the value of major
crops alone is approximately $5.5 billion per year.
Our NFJP program operates six regional offices and three satellite
offices in central and western Washington. OIC provides a full range of
core, intensive, training, and related assistance services to eligible
farmworkers and dependents. From July of 1999 to June of 2004, we
provided direct services to approximately 3,200 farmworkers, most all
of whom had substantial barriers to employment. Approximately 41
percent of our customers had less than an 8th grade education and an
additional 29 percent had only up to an 11th grade education. Also, 58
percent of customers were limited English proficient, 79 percent lacked
significant work history outside of agriculture, 34 percent lacked
transportation, and 20 percent were single head of household with
children. Over 80 percent were unemployed at the time they entered our
program. In light of these obstacles, our staff did an excellent job in
obtaining year-round employment for approximately 1,200 of our
customers, which was 114 percent of program goals during this time
period.
OIC has been a part of the development of our state's WorkForce
Development System (the OneStop system) and are partners in each of the
Workforce Development Councils within the areas that we provide
services. This includes participation on key committees as the voice of
the farmworker, as well as out-stationing of staff in each area's
WorkSource Center. It is our experience that, while our state's
WorkSource Centers provide quality services overall, they are not yet
positioned to provide adequate services to the farmworker community.
Traditionally, farmworkers in our state have been reluctant to go
to official/bureaucratic settings in order to receive services. This
holds true for our WorkSource Centers, most of which are housed in what
were formerly Washington State Employment Security Department Job
Service Centers, and which continue to be managed by this agency. Most
WorkSource Centers maintain traditional business hours, Monday through
Friday from 8:00 a.m. to 5:00 p.m. Moreover, service delivery is
designed around a self-service methodology and makes extensive use of
computer-based systems. As a result migrant and seasonal farmworkers
are prevented from accessing services due to hours of operation. Also,
people with low levels of literacy and/or limited/non-existent computer
skills such as our customers cannot make effective use of available
resources.
A compounding problem is the lack of resources needed to adequately
serve customers with substantial barriers to employment. Our state is
currently working to develop its biennium budget, which currently has a
$2.1 billion shortfall. Major cutbacks are targeted for most all state
agencies, including the Employment Security Department which operates
the WorkSource centers.
For years, our WorkSource Centers have struggled to maintain
adequate staffing due to budgetary constraints. With our state's
current budget crisis, this problem will only worsen. Our NFJP program
has helped to alleviate this problem by out-stationing staff on a
regularly scheduled basis in the eight WorkSource Centers and affiliate
sites. Our bilingual-bicultural staff provides direct services to
customers and collaborating with our other WorkSource partners in
serving the universal access needs of our customers in general, and
farmworkers and agricultural employers in particular.
The National Farmworker Jobs Program has been a success both
nationally and within the state of Washington. To our knowledge, there
are no resources at the federal or state level to fill the void that
will occur if its funding is reduced or eliminated. Thus, the vital
services now provided through the NFJP to Washington State's migrant
and seasonal farmworkers, as well as to our state's WorkSource system,
will not be replaced.
OIC NFJP SUCCESS STORIES
The following illustrates both the value provided through the
National Farmworker Jobs Program, and the perseverance and dedication
of those whom we are entrusted to serve.
Mrs. P came to Washington State with her family, not knowing anyone
here or having any family members. Over most of her 17 years of married
life, Mrs. P had never worked outside the home, while her husband
provided for their five children (ages range from 3 years to 16 years)
and her. Things changed dramatically when her husband suffered a severe
emotional trauma resulting from his involvement in a fatal accident,
together with other negative incidents. He has since been unable to
work and is on long-term disability.
Without a high school education, no driver's license or work
experience, Mrs. P was only able to work in agriculture. She found her
way to our office through the referral of a previous participant.
Following assessment, an Individual Employment Plan was developed with
Mrs. P to help her move out of the fields and into a good job that paid
a livable wage. Mrs. P began work experience training in our Mount
Vernon office as an Office Assistant and attended GED classes in the
evenings. Later that fall she received training in our Office
Technology course, a class developed specifically for our participants
to teach them keyboarding, Microsoft office professional programs and
prepare them for an office occupation (classes are held in the evening
to accommodate participant such as Mrs. P who have to work during the
day to support families). Mrs. P was also provided with job search/
resume assistance that lead to an OJT with Housing Authority of Skagit
County as a full time General Office Clerk earning $9.28 an hour. Mrs.
P also worked hard to get her Washington State Driver's License and
after three attempts she finally realized this goal. Through her
diligence, and the opportunities provided through our program, Mrs. P
is now working as a Section 8 Specialist earning $11.15 an hour with
Housing Authority of Skagit County.
Prior to coming to our program, Ms. A. was, in her words, ``On the
road to nowhere.'' Abused as a child, she attempted suicide at 11 and
ran away from home at the age of 13. When she found her way to our
Wenatchee office, she was unemployed and without any funds to support
her 16 year old son and herself. Her only meaningful employment was 20
years spent working in the orchards since she was 13. As might be
expected, she never attended high school, and her prospects for full-
time employment were bleak.
Staff met with Ms. A to perform an assessment to address her
immediate needs; identify her skills, interests, and goals; and put
together a plan to meet those goals. Ms. A focused on two goals that
had always eluded her: to earn her GED and obtain a permanent job
through which she could support her son.
Staff immediately provided Ms. A with emergency services for food
and shelter to stabilize her situation. They then enrolled her into an
evening High School Equivalency program to provide the instruction and
tutoring she needed to work towards her GED. Also, a work experience
placement was developed to help her develop essential job-related
skills, while also providing income to her household. Staff also
provided Ms. A with ongoing counseling and support to help her attain
success.
Through her hard work, Ms. A felt the pride of having her son watch
as she received her GED in a gradation ceremony with 22 other
farmworkers. She also realized her employment goal when she became a
full-time receptionist and assistant to the housing director for the
Wenatchee Women's Resource Center. In all, staff worked with Ms. A for
approximately one year to assist her in moving back onto a ``road to
somewhere.''
______
Prepared Statement of the National Job Corps Association, Inc.
On behalf of the National Job Corps Association (NJCA) we want to
thank the Labor, Health and Human Services and Education Appropriations
Subcommittee for its dedication to Job Corps and our country's most
vulnerable youth. For 40 years, Job Corps has consistently demonstrated
its relevance and positive results for employers and youth. The
program's supporters represent a bipartisan and broad coalition of
congressional leaders; employers and community organizations; and other
key decision-makers. They all agree that Job Corps has adapted to
America's economic changes by listening to local and national
businesses. In turn, Job Corps has partnered with high demand, high
growth businesses to develop innovative solutions to meet their
workforce needs and find life-long careers for America's most
economically disadvantaged youth.
We appreciate the Committee's strong support for the Job Corps
program and urge you to provide Job Corps with $1.6 billion in the
fiscal year 2006 appropriations process. The NJCA is deeply concerned
that President's budget request does not go far enough to efficiently
maintain the effective job training and educational services and the
requisite infrastructure necessary to serve Job Corps' estimated 68,000
students entering the 21st century workforce. While we encourage
spending restraint by the United States Government, we also believe it
is imperative to provide adequate funding to programs with proven
positive results. We believe the work that Job Corps accomplishes on a
daily basis goes hand-in-hand with the economic prosperity and security
of our local communities and our nation.
JOB CORPS SUCCESSES
Job Corps is known as ``America's first choice for a second
chance'' for a good reason. Job Corps works. Over the past 40 years,
Job Corps has instilled in more than 2 million youth the skills and
attitudes they need to become productive, contributing participants of
the nation's workforce. For a moment, consider some of Job Corps' most
shining examples and see for yourself why Job Corps is considered one
of the most successful job training programs in the country.
Judge Sergio Gutierrez attended the Wolf Creek Job Corps Center
(Oregon) in 1970 after he decided to drop out of high school to provide
additional money for his family which was barely making ends meet at
the time. The self proclaimed introvert proudly recalls how Job Corps
enabled him to come into his own as a leader of a carpentry crew. After
graduating from Job Corps, Judge Gutierrez enrolled at Boise State
University where he received his B.A. in Elementary Education. After
teaching fifth grade and English as a Second Language for a few years,
Judge Gutierrez went back to school to earn his Juris Doctor degree
from the University of California. In 1993, Judge Gutierrez was
selected to serve as the district judge for the 3rd Judicial District
of Idaho. In 2002, he earned a higher judicial appointment, this time
as a member of the Idaho Court of Appeals. Today, Judge Gutierrez takes
his children to visit Job Corps centers. Judge Gutierrez said, ``I
wanted them to see where my success began.''
Jasmine Small, a Licensed Practical Nursing (LPN) graduate from the
Keystone Job Corps Center (Pennsylvania) graduated from the program and
went on to pass the Pennsylvania State Board of Nursing Exam. The
Tobyhanna, Pennsylvania native completed her clinical rotation at the
Kingston HCR Manor Care facility, and in August 2004 accepted a job on-
site. Small aspires to be a Registered Nurse (RN) one-day. ``Job Corps
helped me grow strong and determined to get things done,'' Small said.
Thanks to employer partners like HCR Manor Care, Small will continue to
advance her career within the health care field.
NJCA FISCAL YEAR 2006 REQUEST
The NJCA requests a total of $1.6 billion for Job Corps in the
fiscal year 2006 budget: $1.486 billion for Job Corps' Operational
account and $115 million in the Construction, Rehabilitation and
Acquisitions (CRA) account. The NJCA believes that Job Corps merits a
$54 million increase over the fiscal year 2005 appropriations. This
increase would provide a modest cost-of-living increase over the fiscal
year 2005 enacted levels that unfortunately have not been addressed
over the last two fiscal cycles. The increase would allow Job Corps to
maintain its existing student services and allotted slots with a full
inflationary adjustment for the 122 centers, address infrastructure
rehabilitation needs, continue to eliminate the $350 million backlog of
repairs, and provide second year funding for incremental expansion of
Job Corps.
Operational Funds
As the nation's largest residential education and job training
program, Job Corps is designed to serve our nation's at-risk youth who
might otherwise ``fall between the cracks.'' Job Corps succeeds by
providing a safe place to learn the literacy, vocational, and
employability skills youth need to become productive, taxpaying members
of their community.
Job Corps' 24-hour-a-day, 7-day-a-week program of individualized
attention, discipline, and support has produced long-term results that
save taxpayer dollars. As a residential program, Job Corps operations
are particularly vulnerable to fixed cost increases, including
wholesale food, transportation, utilities/energy, and health care. As
you are aware, the price of gasoline has spiked to all-time highs in
the last three years; food and beverage costs have increased by 24
percent over the last ten years; and medical costs and health insurance
premiums have risen at double-digit rates. These increases are costs
Job Corps cannot control. While Job Corps has been implementing
strategies to decrease costs--particularly energy costs--money has to
be invested in the short-term to save money in the future. We all know
that investing in our homes increases the property value. Investing in
Job Corps increases the value of our local economies through an
increased number of youth--32 percent of Job Corps youth come from
families on public assistance--becoming well-positioned taxpaying
members of their communities.
Job Corps continues to maintain a high placement rate. In fact,
more than 90 percent of all Job Corps graduates get jobs, enlist in the
military, or enroll in higher education, making Job Corps America's
most effective job training programs for economically disadvantaged
youth.
In fiscal year 2006 the NJCA requests the Committee provide $1.486
billion for Job Corps' Operational account. This would allow Job Corps
to:
--Maintain existing student services and allotted slots with a full
cost-of-living increase for the 122 Job Corps centers across
the country;
--Continue Job Corps' rigorous 24-hour-a-day, comprehensive
residential services for approximately 68,000 economically
disadvantaged youth per year;
--Provide funding necessary to cover the escalating costs of staff
salaries, wholesale food, utilities/energy, transportation,
medical, mental and dental services, and workers compensation
insurance; and
--Develop Job Corps pilot and demonstration projects to strengthen
academic and vocational offerings in high-growth and emerging
occupations, including but not limited to health care, homeland
security, and the military.
Construction, Rehabilitation and Acquisition (CRA) Funds
With respect to Job Corps' capital account, the NJCA requests $115
million in fiscal year 2006. These funds would be targeted to: repair
dorms, classrooms, and other student facilities on existing Job Corps
centers; replace deteriorated structures, especially those that
threaten safety and health or violate minimum building codes, including
mechanical systems; continue to address the estimated $350 million
backlog in construction and/or repair needs; and provide second year
funding for incremental Job Corps expansion.
As you know, Job Corps gives young people the opportunity to focus
and learn in a safe, stable, and supportive environment. However, the
average building on a Job Corps center is 46 years-old--20 years older
than the industry standard. While the program is trying valiantly to
address the backlog of construction and repair improvements, it needs
more funding to allow students to learn in an auspicious setting. Over
the past several years, the Committee has taken a proactive approach to
provide the program with the funds necessary to maintain Job Corps'
physical plant. We thank the Committee for its strong support and urge
Members to continue that support in fiscal year 2006.
Incremental Expansion
Within Job Corps' CRA account, the NJCA strongly supports $15
million for second year funding for the Congressional supported
incremental expansion of Job Corps. As part of the NJCA's 10-year
initiative--Job Corps: For the Nation and the Next Generation--to
strengthen and improve Job Corps, the NJCA supports the Committee's
past effort to designate centers as ``High-Growth Centers,'' designed
specifically to address the country's most vital workforce needs. The
NJCA envisions these ``High-Growth Centers'' providing academic and
vocational training in the following high growth, high demand
industries such as: automotive, construction, financial services,
health professions, hospitality, information technology, homeland
security, and transportation. In Job Corps' most recent expansion
process, more than 50 communities across the nation applied for new
centers in their communities. Since that time, many other communities
have expressed interest, including Las Vegas; Nevada, Otttumwa, Iowa;
and the states of New Hampshire and Wyoming, the only states lacking a
Job Corps center. The NJCA looks forward to working with the Committee
to continue the incremental expansion of Job Corps.
Preparing the Workforce for the 21st Century Job Corps: For the Nation
and the Next Generation
Increasingly, private and public employers have turned to the Job
Corps program for qualified entry-level recruits. While they are
enthusiastic about the employees they hire from the program, they
commonly express one limitation: the number of trained and employment-
ready graduates in these fields is too small. Although Job Corps is the
nation's largest national residential training and education program,
it currently can accommodate only about 68,000 students per year.
Hospitals, pharmacies, nursing homes, the U.S. Army and Navy, civilian
military support contractors, security firms, local police departments,
and ambulance companies all say that they can hire as many qualified
applicants as Job Corps can produce. Job Corps has beds, however, for
only one percent of youth eligible to attend the program.
To address these demands, the NJCA has developed a decade-long
initiative, Job Corps: For the Nation and Next Generation, to
strengthen and expand Job Corps to help meet our nation's needs for
trained, entry level workers in three areas: health care, homeland
security, and military preparedness. This Initiative would leverage the
contributions of private and public sector partners with federal
appropriations to expand Job Corps' capacity to train entry-level
employees in these three crucial areas of shortage. The Initiative
would produce quantifiable results over 10 years: 60,000 graduates in
health care occupations, 50,000 graduates defending homeland security,
and 50,000 military personnel. To support this Initiative, the NJCA
requests dedicated funds beyond the NJCA's $1.6 billion request in the
following federal programs and/or Departments:
Addressing the Nation's Health Care Workforce Shortage
The NJCA requests dedicated funding--$5 million--for the Health
Resources and Services Administration (HRSA)'s Bureau of Health
Professions to address the shortage of health care professionals and
provide access to health care vocational opportunities for many
disadvantaged young people enrolled in Job Corps. The NJCA strongly
believes that Job Corps centers are uniquely qualified to utilize HRSA
grant programs to train students to pursue health careers while
generating more health care professionals to serve economically
disadvantaged communities. The NJCA urges that HRSA funds be dedicated
to Job Corps in two key grant programs: Pathways to Health Professions
Demonstration Program and Health Careers Adopt-a-School Demonstration
Program.
Ensuring Safer Communities for the Nation
Within the Department of Homeland Security (DHS) and building upon
language in the fiscal year 2005 Omnibus Appropriations legislation,
the NJCA requests funds--$2 million--for a pilot demonstration program
to establish local relationships between the Transportation Security
Administration (TSA) at three designated Job Corps centers. The pilot
program would study the needs of airports and attrition rates of
airport security personnel and the feasibility of utilizing local Job
Corps centers with security training programs as suppliers of
qualified, eager-to-work homeland security and airport screener
employees.
The NJCA also requests funds--$3 million--from DHS in fiscal year
2006 budget to develop fully recognized Federal Emergency Management
Agency (FEMA) training sites at three designated Job Corps centers. The
partnership between FEMA and Job Corps would include Homeland Security
and Fire Safety certifications that are currently incorporated into
existing Safety/Security vocational programs on Job Corps campuses
across the country.
Enhancing America's Security and Readiness
Building upon the mutually beneficial relationships that Job Corps
has established with the U.S. Army, U.S. Navy, U.S. Coast Guard, and
U.S. Army and Air National Guard, the NJCA requests $5 million from the
Department of Defense (DOD) to develop military-endorsed curriculum in
order to establish six military preparation programs that would
increase the number of Tier I high quality accessions recruits joining
the military. These military preparation programs would be incorporated
within a student's academic and vocational training. By providing these
funds, Job Corps can significantly supplement the military's efforts to
address unmet recruiting and retention needs through a 40-year
successful residential education and training program for disadvantaged
youth. Curricula would include the critical components valued by the
military in grooming and advancing recruits to become high quality
accession enlistments. Preference would be given to Job Corps centers
located near military installations.
President's Community College Initiative
The NJCA requests that a minimum of $10 million of President Bush's
proposed $250 million fiscal year 2006 Community College Initiative
(also called the President's Community-Based Job Training Grants) be
dedicated to community colleges partnerships with Job Corps centers.
The NJCA requests this modest portion within the U.S. Department of
Labor's Employment and Training Administration proposed budget be
designated to: (1) develop strategic partnerships with community
colleges, business and industry leaders, and Job Corps centers to train
students in high, growth, high demand industries; and (2) design ``dual
enrollment'' programs based on reciprocal agreements between Job Corps
and adjacent community colleges.
The NJCA strongly believes it is fitting and proper for community
colleges to work with Job Corps because both parties share the same
basic goals of providing access and opportunity to disadvantaged
Americans. Job Corps and community colleges also have the ability to
partner with employers looking for higher-skilled workers. Numerous Job
Corps centers have already established working relationships and
participated with local community colleges to provide advanced career
training, increased opportunity to pursue occupations in high-growth
industries, and greater access to industry-recognized certification
programs.
CONCLUSION
As Job Corps looks to the future, we hope you agree that it remains
a federal program that is worthy of America's support. The NJCA looks
forward to working with members of this Committee to define, expand and
advance this decade-long effort to tie Job Corps' training more closely
to our nation's most critical labor needs. Even in these tough
budgetary times when no federal program can be above scrutiny, Job
Corps shines through with versatility of purpose and a record of
success that can help America address its most serious challenges. Job
Corps remains a beacon of hope for many young Americans and an
excellent example of our government's role in helping all sectors of
our society. Thank you for your strong support.
The NJCA is a professional trade association comprised of business,
labor, volunteer, advocacy, academic, and community organizations. All
are joined in supporting the Association's mission ``to unite the Job
Corps community through activities and services that strengthen the
program for the benefit of students, staff and employers.''
______
Prepared Statement of Rural Opportunities, Inc.
On behalf of the Migrant and Seasonal Farmworkers in Pennsylvania,
Rural Opportunities, Inc. (ROI) extends a sincere thank you to the Sub-
Committee for the opportunity to share our success as the statewide
grantee funded by the United States Department of Labor under the
Workforce Investment Act, Section 167--The National Farmworker Jobs
Program (NFJP).
In providing services to migrant and seasonal farmworkers, ROI's 27
years of experience in Pennsylvania has clearly demonstrated that
farmworkers are a ``special population'' that have unique needs that
require not only basic skills, English-as-a-Second Language, and job
training; but, access to services via outreach in rural communities at
non-traditional hours of service provision where and when One-Stop
services are virtually non-existent. Further, should these services be
required, the language requirements to ensure access are often
unavailable unless a ROI staff person is on site in the One-Stop.
In painting a personal picture, examples may be that if a
farmworker were accessing services in Philadelphia County, they may
speak Khmer. If a farmworker were accessing services in Franklin County
or Chester County, he/she may speak Creole and Spanish respectively.
ROI has continuously hired bilingual staff that is culturally sensitive
and skilled at working with the predominant farmworker population in
the specific service-provision area; thus, ensuring access.
With this said ROI has taken its responsibility seriously for the
stewardship of the federal funds it is awarded by ensuring access to
effective employment and training programs that not only ensure the
transferability of skills, but future upward-mobility both within
agriculture and out. ROI places a high priority on measuring and
improving the efficiency and effectiveness of our program by collecting
detailed data on our farmworker program participants through our
Management Information System, by monitoring program results as they
pertain to performance standards, and evaluating our net impact.
ROI has always been a strong training provider. Thus, again, having
the NFJP Program ``zeroed out'' for funding, when we are a premiere
program that truly provides training to the hardest-to-serve, is
unconscionable. Perhaps, one can better understand the impact of the
NFJP Program through the words of a program graduate. Alfonso Lua, of
Dunmoyer Trucking, Inc., states, ``When I came to the program several
years ago, I had nothing. Rural Opportunities helped me get my
Commercial Driver's License (CDL) and I became a truck driver. Now I
own 13 rental properties. I am going to make almost $70,000 this year.
The program is like a ladder you can use to better yourself. If you
want to have success, you have to educate yourself and learn something
new. That's why the program is there to help with this. It is an
alternative to staying where you are''.
Alfonso Lua was a program participant who had been a farmworker for
many years; yet, had always dreamed of becoming a truck driver. In the
typical One-Stop setting, Alfonso may not have been able to access CDL
Training because of his, then, language limitations. ROI worked hand-
in-hand with Alfonso translating the parts of the truck from Spanish to
English to ensure Alfonso clearly understood the translation. Further,
ROI Staff provided on-site tutoring, ensuring a positive outcome.
Another program participant, Madelyn Morales, a Department Manager at
Wal-Mart, Inc. states, ``Thank you to Rural Opportunities, Inc. who
believed in me and opened possibilities for me to become someone in
life''. When program participants confront barriers in accessing
employment that requires specialized training, ROI has the expertise to
tailor a curriculum to an individual's needs. This is extremely
important in working with the farmworker population.
ROI also has taken the initiative, as a NFJP Grantee, to work hand-
in-hand with agricultural employers who often are overlooked in the
One-Stop System. ROI has developed cross-training for agricultural
upgrade taking harvesters into a variety of demand occupations. Without
the services provided by ROI under the auspices of the NFJP program,
these particular training services would be inaccessible. The
significance of this can not be underestimated as an agricultural
employer representative, Maria C. Serrano, Human Resource & Benefits
Specialist of Giorgi Mushroom Company, states, ``We at Giorgi Mushroom
Company have the practice of employee development and we provide
advancement opportunities to motivate employees. In our harvesting
department it is often hard to promote within, since they lack the
skills for advancement. That is where Rural Opportunities, Inc. comes
in. They help tremendously, companies like ours to help and motivate
employees to pursue a different position within the company. Their NFJP
Program allows our employees the opportunity to advance by providing
the necessary resources to develop new skills, where there is no
economic drain to the company. Quite the contrary, it helps our
company. We have enjoyed a very good relationship with ROI in allowing
us the opportunity so that we can pass this program on to our
employees. Their programs have helped not only our employees become a
better people and gain a new position, but also our company as a whole.
ROI offers remarkable programs that work for both the company and
employees by giving them the chance. Without these programs, no one
wins. We strongly agree that ROI Programs benefit both parties
involved; and we deeply support their efforts.''
In closing, ROI believes our success speak volumes about the NFJP
Program's success. We are just one of the NFJP Grantees that the
Department of Labor's own assessment stipulates do excellent work every
day. Let us not forget that Migrant and Seasonal Farmworkers already
bring multiple barriers to the table. Let us not place another barrier
in their path by eliminating the NFJP Program. We request the Sub-
Committee recognize the enormous potential of this program by
maintaining the NFJP Program in the Appropriations for the Department
of Labor for 2006; thus, ensuring that the services this population so
desperately needs is funded.
Thank you for this opportunity to present testimony today.
______
DEPARTMENT OF HEALTH AND HUMAN SERVICES
Prepared Statement of the Academic Family Medicine Advocacy Alliance
Mr. Chairman, the Society of Teachers of Family Medicine, the
Association of Departments of Family Medicine, the Association of
Family Medicine Residency Directors, and the North American Primary
Care Research Group, thank you for the opportunity to provide this
statement for the record on behalf of funding for family medicine
training, and the Agency for Health Care Research and Quality (AHRQ).
HEALTH PROFESSIONS: THE PRIMARY CARE MEDICINE AND DENTISTRY CLUSTER
Mr. Chairman, the Academic Family Medicine Advocacy Alliance would
like to thank you and this committee for your commitment to these
programs. We very much appreciate the funding included in the fiscal
year 2005 appropriations funding bill, especially in light of fiscal
constraints. Family medicine training programs are funded under Section
747, the Primary Care Medicine and Dentistry cluster, of Title VII of
the Public Health Service Act. We ask that you continue your support
for family medicine training, and restore the appropriations level for
section 747, the Primary Care Medicine and Dentistry Cluster, to fiscal
year 2003 levels of $92 million, a small increase of about $3 million.
This statement is designed to show the committee how its investment
is paying off. This statement will discuss the success of these
programs and include recommendations about what still needs to be done.
As you look at all the opportunities you have to fund domestic health
programs you need to be able to make judgments about the value and
utility of these programs. We have been asked in various venues to show
proof that these funds actually do what they are designed to do. We
must show that this money makes a difference. In this statement we
intend to do just that. In addition, we believe Congress also needs to
understand the unmet needs that exist in our nation--needs health
professions programs can successfully help address.
President's Budget Request for Fiscal Year 2006 Once Again Zeros Out
Primary Care Funding
The President's budget zeroes out funding for the Primary Care
Medicine and Dentistry cluster. In addition, the proposal includes only
$11 million for all Title VII Health Professions programs, a sharp cut
from current level funding of $308 million.
Family Medicine Training Programs Are A Success
First, let's take a look at health professions training--
specifically family medicine training. These programs are producing the
outcomes that Congress has requested. A recent study (Family Medicine,
June 2002), by the Robert Graham Center For Policy Studies showed that
federal funding through Title VII of family medicine departments,
predoptoral programs, and faculty development hps made a difference.
The study measured the differences in career choices made by students
exposed to Section 747 funds compared to those who were not, both
within the same school and in different schools. This research found
that section 747 funding is associated with:
--54 percent increase in students going into family practice
--25 percent more into primary care
--34 percent more into rural underserved counties
The increased number of family physicians associated with Title VII
funding between 1978-1993 was found to be about 7,000. If the same
continued for the next decade, there would be 12,000 additional family
physicians attributable to Section 747 funding in 2003. We must
conclude from this data that this funding means that thousands of
physicians are making different career choices, choices that positively
affect millions of patients in underserved areas and in primary care.
Moreover, if this money were to ``go away'' fewer students would be
making these career choices.
Funding primary care training programs improves the health of America
A greater supply of primary care physicians is associated with
positive health outcomes due to early detection and an increased
integration of care and oversight. With the associated rise in primary
care physicians cited above, we can extrapolate from other sources that
this increase could mean:
--4,600 cases of colon cancer prevented and 1,400 deaths from colon
cancer prevented.
--7,400 cases of cervical cancer prevented and 3,200 deaths from
cervical cancer prevented.
--24,000 individuals quit smoking.
--7,700 additional physicians serving in rural areas and 970
additional physicians serving in HPSAs.
--1.2 million deaths prevented.
Primary care is cost effective
A study in Health Affairs (April 2004) demonstrates that the
associated measures in primary care physicans resulting from Title VII,
section 747 leads to an estimated $320 billion in saved health care
expenses and 1.2 million lives saved over 26 years. For example, a
study in the New England Journal of Medicine (Feb. 1996) looked at
outcomes and costs of people who came to a primary care physician, a
chiropractor, or an orthopedic surgeon for their back pain. It was
determined that the patients all had the same outcome regardless of who
provided care, but the primary care physicians' care cost $194 per
person less. According to a study in the Journal of Family Practice
(May 1998) because back pain is so common, a primary care physician can
expect to see 82 cases per year; therefore, Title VII funds can be
thought to have had an estimated overall health care cost savings of
$2.4 billion from back pain alone.
Loss of funding for family medicine training would cause tremendous
impact on service to the underserved
A study by the Robert Graham Center looked at counties designated
as HPSAs to determine the degree to which the United States relies on
family physicians in comparison to more other specialty. Of the more
than three thousand counties in the United States, 784 are designated
HPSAs. In a hypothetical exercise, the study removed all family
physicians from the U.S. counties. Without family physicians, there
would be 1,184 HPSAs--a 43 percent increase.
Family Physicians Staff the Nation's Community Health Centers (CHCs)
The President's fiscal year 2006 budget would provide approximately
$2 billion to CHCs in fiscal year 2006, an increase of $304 million.
Since nearly one-half of the physicians who staff the nation's CHCs are
family physicians, support for Section 747 would mean more trained
doctors for those centers.
Family Physicians Have an Economic Impact on States
On average, the income that comes into a community due to the
presence of one family physician, and the additional jobs that result
from his or her practice, amounts to approximately:
--$1.2milllion in rural areas, and,
--$0.9 million in urban areas.
(Oklahoma Physician Manpower Training Commission, October 2003.)
What Is The Unmet Need? Why Must We Continue To Fund And Grow These
Programs?
According to a study by Politzer, et al (The Journal of Rural
Health, Winter,1999) Title VII funding is key to ending HPSAs. This
funding has led to the time needed for HPSA elimination to decrease to
15 years. Doubling the funding for these programs would decrease the
time for HPSA elimination to as little as 6 years.
According to the study, without this funding, not only would HPSAs
not be eliminated, but the number of shortage areas would continue to
grow. Moreover, success has been attained by an allocation of funds
more favorable to family medicine than the other two primary care
specialties.
Title VII funding has indeed accomplished many of the objectives
for which it was designed:
--Funding of innovative projects
--Providing ``seed money'' for the start-up of new projects
--The creation and maintenance of departments of family medicine in
the nation's medical schools
--The development of 3rd year clerkships in family medicine
--The increase in students selecting primary care residencies from
those schools with funded family medicine departments and 3rd
year clerkships
--The increased rate of graduates from Title VII funded projects
entering practice in medically underserved areas (MUAs), with a
resultant reduction in the time required for Health Professions
Shortage Area (HPSA) elimination
Section 747 Advisory Committee Recommends Higher Funding
In 1998, Congress established an Advisory Committee to review and
make recommendations on Section 747. The Advisory Committee on Training
in Primary Care Medicine and Dentistry (ACTPCMD) recently released its
recommendations to Congress and the Secretary of the Department of
Health and Human Services. The first recommendation urges greatly
expanding federal support for Section 747 to $198 million. The
Committee notes the growing need for primary care providers, as well as
the success of Title VII funded programs.
The training enterprise that does not value primary care either
financially or otherwise is a key part of the problem. Title VII funds
that support the infrastructure and stability of family medicine
departments in medical schools have to be sustained in order to keep
producing the current levels of primary care physicians and, more
specifically, those who will practice in rural and other underserved
areas. Clearly, the programs of Title VII are on the right track toward
meeting the health care challenges of the 21st century. So, while we
believe that current funding must be maintained, more needs to be done.
Proposed Performance Measures need to be redefined
The current proposed performance measures are neither measurable
nor appropriate. Consequently, assessments of effectiveness of the
programs based on these measures are highly flawed.
For example, the target set for the proportion of underrepresented
minorities (URMs) and disadvantaged students in health professions
funded programs is set at 50 percent for 2005, even though only 12.5
percent of current medical school graduates are URMs, and data on
disadvantaged backgrounds is not routinely, or accurately collected.
The concept of disadvantaged background varies based on income related
to family size, or is based on a vague--non-quantifiable--notion of
persons growing up in environments that don't prepare them to enter
health professions schools.
In 2000 approximately 12.5 percent of the medical degrees awarded
in the United States went to underrepresented minorities. For all of
health professions minority representation has risen from 8.3 percent
in 1985 to 11.7 percent in 2000. Given this data, it's simply
unrealistic to expect any program to increase its minority
representation in one year from 12.5 percent to 25 or 50 percent.
Primary Care Training Programs React Quickly to Emerging Health
Challenges
Title VII dollars have created an infrastructure that allows
educational programs to respond to contemporary health care issues.
Specifically, the ACTPCMD report states that:
``Investment in education to provide primary care has effects that
touch the largest number of people in the country. No other group of
health care providers can exert such a broad influence on the kind and
quality of health care in the United States. Primary care training
programs are ideally positioned to react quickly to meet ever-changing
health care needs and issues, whether they are related to HIV/AIDS,
growing numbers of elderly with chronic illnesses, implications of the
modern genetics revolution, the threat of bioterrorism, or other issues
that will continue to emerge and demand rapid educational intervention.
Thus, this infrastructure is uniquely able to play a pivotal role in
bringing emerging issues in health care to the population at large.''
Mr. Chairman, we know that this committee has to weigh the value of
funding various programs against each other. We hope that the evidence
we have presented here will bring the committee to the conclusion that
funding spent on these programs would bring value for the money and
would be money exceptionally well spent.
FUNDING FOR THE AGENCY FOR HEALTH CARE RESEARCH AND QUALITY (AHRQ)
Mr. Chairman, once again, we thank you and this committee for
funding this important agency. It is apparent that the key federal
agency available to fund primary care research is the Agency for
Healthcare Research and Quality (AHRQ). In its recent reauthorization,
Congress established within the Agency a Center for Primary Care
Research to ``serve as the principal source of funding for primary care
practice research in the Department of Health and Human Services.'' The
statute defined primary care research as research that ``focuses on the
first contact when illness or health concerns arise, the diagnosis,
treatment or referral to specialty care, preventive care, and the
relationship between the clinician and the patient in the context of
the family and community.
Funding Request For AHRQ
We recommend appropriations of $440 million for the Agency for
Healthcare Research and Quality (AHRQ) in fiscal year 2005. AHRQ
conducts primary care and health services research geared to physician
practices, health plans and policymakers that helps the American
population as a whole.
President's Budget Request for fiscal year 2006 AHRQ Funding
The President's budget includes $316 million for AHRQ, which is the
same as actual funding for fiscal year 2005. This figure does not
recognize the $53 million in authorization that Congress provided AHRQ
in the Medicare Modernization Act to study ``clinical effectiveness and
appropriateness of specific health services and treatments.''
What Does AHRQ Do?
AHRQ's three goals are to (1) improve physician practice and
Americans' health outcomes, (2) improve the quality of health care
(e.g., patient safety), and (3) improve the health care system (e.g.,
increase access and reduce costs). In brief, AHRQ ``helps to improve
the health and health care of the American people . . .'' (AHRQ report,
March, 2001).
How Does AHRQ Meet Its Goals?
AHRQ translates research findings from basic science entities like
the National Institutes of Health into information that doctors can use
every day in their practice with their patients. Another key function
of the agency is to support research on the conditions that affect most
Americans.
AHRQ Translates Research into Everyday Practice
Congress has provided billions of dollars to the National
Institutes of Health, which has resulted in important insights in
preventing and curing major diseases. AHRQ takes this basic science and
produces information that physicians can use every day in their
practices. AHRQ also distributes this information throughout the health
care system. In short, AHRQ is the link between research and the
patient care that Americans receive. An example of this link is basic
science research showing that beta blockers reduce mortality. AHRQ
supported research to help physicians determine which patients with
heart attacks would benefit from this medication.
AHRQ Supports Research on Conditions Affecting Most Americans
Most Americans get their medical care in doctors' offices and
clinics. However, most medical research comes from the study of
extremely ill patients in hospitals. AHRQ studies and supports research
on the types of illness that trouble most people. AHRQ looks at the
problems that bring people to their doctors every day--not the problems
that send them to the hospital. For example, AHRQ supported research
that found older antidepressant drugs are as effective as new
antidepressant medications in treating depression, a condition that
affects millions of Americans.
Institute of Medicine Recommends $1 Billion for AHRQ
The Institute of Medicine's report, Crossing the Quality Chasm: A
New Health System for the 21St Century (2001), recommended $1 billion a
year for AHRQ to ``develop strategies, goals, and actions plans for
achieving substantial improvements in quality in the next 5 years. ``
The report looked at redesigning health care delivery in the United
States. AHRQ is a linchpin in retooling the American health care
system.
recommendations for family medicine training and research
The Academic Family Medicine Advocacy Alliance have two main
recommendations for the fiscal year 2006 Labor/HHS Appropriations bill.
They are as follows:
--We ask that you continue your support for family medicine training,
and bring the appropriations level for section 747, the Primary
Care Medicine and Dentistry Cluster, up to fiscal year 2003
levels of $92 million, a small increase of approximately $3
million.
--In order to support critical practice-oriented primary care
research, and to ensure that existing grants and contracts will
not be cut, we are asking that the Agency for Healthcare
Research and Quality be funded at $440 million.
______
Prepared Statement of AIDS Action
I am pleased to submit this testimony to the members of this
committee on the importance of adequate funding for the fiscal year
2006 HIV/AIDS portfolio. The federal government's commitment to funding
research, prevention, and care and treatment for those living with HIV
is critical. We would not be where we are today in responding to this
epidemic without the federal government's 24-year commitment to funding
HIV programs here at home. AIDS Action is dedicated to working with the
federal government to make sure it sustains this commitment.
Since 1984, AIDS Action's goals have been clear: to ensure
effective, evidence-based HIV care, treatment, and prevention services;
to encourage the continuing pursuit of a cure and a vaccine for HIV
infection; and to support the development of a public health system
which ensures that its services are available to all those in need.
Furthermore, our commitment to working toward these goals is constant:
AIDS Action is here Until It's Over.
For over 20 years AIDS Action Council, through its member
organizations and the greater public health community, has worked to
enhance HIV prevention programs, research protocols, and care and
treatment services. An important part of this collaborative effort has
been working to secure comprehensive federal resources to address
community needs.
It is therefore on behalf of AIDS Action Council's diverse
membership, comprising community-based AIDS service organizations,
public health departments, and other organizations concerned with HIV
research, education, and advocacy, that I bring your attention to some
of the issues impacting the funding picture for fiscal year 2006.
Despite the good news of improved treatments, which have made it
possible for people with HIV disease to lead longer and healthier
lives, stark realities remain:
--There is neither a cure nor a vaccine for HIV.
--Current treatments do not work for everyone, and some have
debilitating side-effects.
--There are nearly 1 million people living with HIV in the United
States.
--Access to health care is unequal.
--Half a million HIV positive Americans are not receiving regular
medical care.
The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act,
which is administered by the Health Resources and Services
Administration (HRSA) and is funded by this subcommittee, provides
services to more than 533,000 people living with and affected by HIV
throughout the United States and its territories. It is the single
largest source of federal funding solely focused on the delivery of HIV
services; it provides the framework for our national response to the
HIV epidemic. As such, CARE Act programs have been critical to reducing
the impact of the domestic HIV epidemic. Yet, providers of HIV services
are working from a deficit. In recent years, CARE Act funding has been
decreased through across-the-board rescissions. The .80 percent
rescission that was executed on all non-defense and non-homeland
security discretionary spending during the final negotiations for the
fiscal year 2005 bill had a devastating impact on the HIV/AIDS
portfolio in general, and on the Ryan White CARE Act in particular.
Moreover, President Bush's budget for fiscal year 2006 requests just
one increase to the CARE Act--an additional $10 million for the AIDS
Drug Assistance Program (ADAP).
Now in its fifteenth year, the Ryan White CARE Act is scheduled for
reauthorization in this session of the 109th Congress, a fact President
Bush made known to all Americans in his State of the Union address,
when he voiced his strong support for reauthorization. He stated,
``Because HIV/AIDS brings suffering and fear into so many lives, I ask
you to reauthorize the Ryan White Act to encourage prevention, and
provide care and treatment to the victims of that disease. And as we
update this important law, we must focus our efforts on fellow citizens
with the highest rates of new cases, African American men and women.''
In June 2004, while discussing the global HIV epidemic, our
President stated with confidence, ``There's no doubt we can bring hope
in all parts of the world, not only in Africa, but in neighborhoods in
our own country where people wonder what the American Dream means.''
On this point, AIDS Action Council concurs with President Bush:
hope can be brought to all parts of the world. However, we respectfully
disagree with the President on what will be needed to ensure hope here
at home. The delivery of hope relies on the delivery of health care to
all neighborhoods in this great nation--an effort that will not be
sufficiently supported by the funding levels the President has
requested for the HIV/AIDS portfolio in his fiscal year 2006 budget
request.
Clearly, it will take more than a $10 million increase for ADAP, a
single program within the Ryan White CARE Act, to ensure HIV positive
Americans receive the care and services necessary to remain healthy and
productive. It is my hope that the Congress, through the good work of
this subcommittee, will recognize and address the true funding needs of
the care programs within the domestic HIV/AIDS portfolio.
Last year, there was an overall increase of 14.5 percent in the
estimated number of living AIDS cases among the fifty-one hardest hit
eligible metropolitan areas (EMAs) in the United States, with increases
as high as 22.6 percent in some areas. Yet fiscal year 2004 funding
allocations for Title I of the Ryan White CARE Act, which is designed
to provide services to these areas, were reduced. Forty of the fifty-
one jurisdictions experienced a decrease in funding, with some
decreases as high as 15 percent. Similar reductions continued in fiscal
year 2005 when thirty-three of the EMAs experienced a funding decrease,
the highest being 14 percent.
Some of the services provided under Title I include physician
visits, laboratory services, case management, home-based and hospice
care, nutrition services, and substance abuse and mental health
services. According to the most recent data available from the Health
Resources and Services Administration (HRSA), more than half (51.8
percent) of Title I funds are allocated to core health care services,
and more than one-third (35.0 percent) are allocated to services
closely associated with medical care (including medically-based housing
and care coordination and referral). These services are critical to
ensuring patients have access to, and can effectively utilize, life-
saving therapies.
Title II of the CARE Act ensures a foundation for HIV related
health care services in each state and territory, including the
critically important AIDS Drug Assistance Program (ADAP) and Emerging
Communities Program. Title II base grants (excluding ADAP and Emerging
Communities) decreased from $292,279,000 in fiscal year 2004 to
$282,597,700 in fiscal year 2005 for a total decrease of over $9
million ($9,681,300).
Funding for Emerging Communities remained stable at $10 million,
but it was divided among an increased number of communities. The $5
million ``tier one'' award was divided among four cities in fiscal year
2004 and among five cities this fiscal year, which resulted in funding
reductions. Funding cuts for the original four cities ranged from
$200,000 to $264,000 so that a fifth could receive $836,000. This type
of funding variability is not conducive to providing consistent HIV
care in emerging communities.
We applaud the President's recommended increase of $10 million for
ADAP in his fiscal year 2006 budget. ADAP provides medications for the
treatment of individuals with HIV who do not have access to Medicaid or
other health insurance. According to the National ADAP Monitoring
Project, approximately 85,825 clients received medications through ADAP
in June 2003.
A single drug in the multiple-drug regimen of highly active anti-
retroviral therapy (HAART), the standard of care for HIV disease, may
cost as much as $15,000 annually. Drugs to treat other infections may
bring the annual cost for a single HIV patient to $40,000 a year. With
the increasing number of people living with AIDS, the number of newly
diagnosed infections fixed at 40,000 per year, and cuts in funding to
state Medicaid programs, pressures on ADAP are increasing. Over the
years, ADAP has proven to be a remarkable program, allowing people to
receive the care and treatment they need. Consequently, AIDS Action
urges Congress both to fully fund ADAP and to consider restructuring
ADAP to ensure universal access to all needed drugs, regardless of
state of residence. Moreover, many of the medicines supplied through
ADAP reach maximum efficacy only in conjunction with proper nutrition.
Therefore, we urge Congress to continue funding for Ryan White CARE Act
nutrition programs, funded predominantly through Titles I and II.
Funding for Title III of the Ryan White CARE Act is awarded under
the Early Intervention Services program. Title III grant recipients
include community-based clinics and medical centers, hospitals, public
health departments, and universities in 22 states and the District of
Columbia. The grants are targeted toward new and emerging sub-
populations impacted by the HIV epidemic. The Title III funds are
particularly needed in rural areas where the availability of HIV care
and treatment is still relatively new. Urban areas also continue to
need Title III funds to ensure that emerging populations within these
areas are not shortchanged as grantees struggle to meet the needs of
previously identified HIV positive populations.
The Title IV portion of the Ryan White CARE Act is awarded under
the Comprehensive Family Services Program to provide comprehensive care
for HIV positive women, infants, children, and youth, as well as their
affected families. These grants fund the planning of services that
provide comprehensive HIV care and treatment and the strengthening of
the safety net for HIV positive individuals and their families.
If we are to comprehensively address the HIV care and treatment
crisis in the United States, we must never forget the smaller--but
nonetheless significant--programs in the CARE Act: AIDS Education and
Training Centers (AETC), dental reimbursement, and special projects of
national significance (SPNS). Like nearly every other CARE Act program,
AETC and SPNS have been affected by diminishing federal funding.
Given that the President continues to support increases in funding
to, and a greater reliance on, community health centers nationwide to
provide care to the uninsured and under insured, we now find ourselves
simultaneously faced with a pool of community providers who need to be
educated about proper HIV care. The role of the AETCs is invaluable in
ensuring that such education is available to physicians who are being
asked to treat the increasing numbers of HIV positive patients who
depend on them for care. Dental care is another crucial part of the
spectrum of services needed by people living with HIV disease. Oral
health is one of the first aspects of health care to be neglected by
those who cannot afford, or do not have access to, proper medical care.
Furthermore, oral health problems are often one of the first
manifestations of HIV disease. Reimbursement offered by this CARE Act
program allows dental education institutions to offer their much needed
services to people living with HIV.
As this testimony suggests, rising infections and strapped care
systems necessitate the research and development of innovative models
of care. The SPNS program is designed for this very purpose and must
therefore receive sufficient funding.
AIDS Action believes the entire Ryan White CARE Act portfolio needs
$3.2 billion for fiscal year 2006 to address the true needs of the
approximately 1 million people that the Centers for Disease Control and
Prevention (CDC) estimates are living with HIV in the United States.
President Bush has requested just over $2 billion ($2,083,342,088).
The Housing Opportunities for People with AIDS (HOPWA) program,
administered by the U.S. Department of Housing and Urban Development
(HUD), is another integral program in the HIV care system. Stable
housing is absolutely critical to the ability of people living with HIV
to access and adhere to an effective HIV treatment plan. Without
housing, one cannot appropriately store medicine or food and often
cannot consistently access clean water or clean bathrooms. Furthermore,
when one has no housing, the need for shelter often rises above the
need to take care of one's HIV infection, which places the individual
at higher risk of becoming ill and infecting others.
AIDS Housing of Washington has estimated that approximately one-
third to one-half of people living with HIV are homeless, cannot afford
their current housing, or are at risk of becoming homeless. HOPWA is
the only program that specifically addresses the housing needs of
people living with HIV. Despite the importance of the program, HOPWA's
funding has been dramatically cut. In fiscal year 2005, HOPWA was
funded at $281.7 million ($281,728,000), down from $294.8 million
($294,800,000) in fiscal year 2004--a cut of more than $13 million. In
his fiscal year 2006 budget proposal, the President proposes an
additional cut to the program of almost $14 million, to $268 million
($268,000,000) total. AIDS Action believes that $385 million should be
appropriated to the HOPWA program for fiscal year 2006 to address the
needs of HIV positive people requiring housing assistance.
HIV continues to be an ongoing public health crisis. Despite
treatment advances, there was a 2 percent increase in progression from
HIV to an AIDS diagnosis between 2001 and 2002--the first such increase
in several years. AIDS-defining illnesses are the leading cause of
death among African-American women between the ages of 25 and 34 and
they are the third leading cause of death among all African Americans
in this age group. They are the sixth leading cause of death for
Latinos and whites in this age group.
According to CDC estimates contained in the agency's December 2003
HIV/AIDS Surveillance Report, 929,985 cumulative cases of AIDS have
been diagnosed in the United States, with a total of 524,059 deaths
since the beginning of the epidemic. The CDC also estimates that
between 850,000 and 950,000 people are living with HIV/AIDS in the
United States, and approximately one-quarter of them, or 180,000-
280,000 people, are unaware of their status and could unknowingly
transmit the virus to another person.
For several years, estimates of new infections have remained at
40,000 per year, compared to an estimated 180,000 new infections in the
mid 1980s: an extraordinary achievement in efforts against HIV.
To further reduce new infections, the CDC implemented a new
initiative in April of 2003 called Advancing HIV Prevention: New
Strategies for a Changing Epidemic (AHP), consisting of four key
strategies:
--Make HIV testing a routine part of medical care.
--Implement new models for diagnosing HIV infection outside medical
settings.
--Prevent new infections by working with persons diagnosed with HIV
and their partners.
--Decrease mother-to-child transmission of HIV.
The Urban Coalition for HIV/AIDS Prevention (UCHAPS), which
represents the six cities that are directly funded by the CDC for HIV
prevention and is an AIDS Action member, has responded positively to
the AHP Initiative. UCHAPS members are working with the CDC to
implement the Initiative effectively in their respective communities.
This Initiative, however, does not supersede the HIV Prevention
Strategic Plan that was published by the CDC in 2001, which stated a
goal of reducing by half the number of new HIV infections by 2005.
These strategies, though innovative, require additional funding for
implementation. AIDS Action Council estimates that the CDC HIV/AIDS,
STD, and TB prevention programs will need $2.33 billion in fiscal year
2006 to address the true unmet needs of prevention in HIV/AIDS, STDs,
and TB. AIDS Action Council therefore is concerned that the President
limited his fiscal year 2006 request for the CDC HIV/AIDS, sexually
transmitted disease (STD), and tuberculosis (TB) prevention programs to
$956,283,000--a request that is $4,428,000 less than what the CDC
received in fiscal year 2005.
How will we keep apace of the epidemic and meet--albeit belatedly--
the goal of limiting new infections to 20,000 annually without an
immediate infusion of new resources, new partnerships, and new funding?
Without such an infusion, this country will continue to face
significant challenges in providing urgent care and treatment to HIV
positive people.
Research on the domestic HIV epidemic is vital to the control of
the disease. Research that includes biomedical, behavioral, and social
services is the cornerstone of HIV prevention research. The research
agenda for HIV prevention science at the Office of AIDS Research (OAR),
part of the National Institutes of Health (NIH), targets interventions
to at-risk individuals, both infected and uninfected, to reduce HIV
transmission. It is essential that OAR continue its groundbreaking
research to secure a vaccine that will keep HIV negative people
negative. It is equally important that this office continue to research
promising treatment vaccines that may help HIV positive people maintain
optimal health. The research on microbicides for vaginal and anal
sexual intercourse is critical as well. The use of microbicides by the
receptive partner will give them power over their personal health when
they cannot negotiate condom use with their partner to protect
themselves from HIV transmission.
The research at NIH on new medications for drug resistant strains
of HIV is also critical. The current success of treatment for people
living with HIV and AIDS is due in large part to early research
investments in new drugs that now have improved the health of people
living with HIV. The United States must continue to take the lead in
the research and development of new medicines to treat current and
future strains of HIV. Primary prevention of new HIV infections must
remain a high priority in the field of research.
Behavioral research to help individuals delay the initiation of
sexual relations, limit the number of sexual partners, limit the
consumption of alcohol and drugs prior to sexual relations, and move
from drug use to drug treatment are all critically important in finding
a solution to the spread of HIV in the United States. NIH's Office of
AIDS Research is critical in supporting all of these research arenas.
Increased funding is necessary to ensure that the resources needed to
address all the research concerns are available both now and in the
future. Commitment in research will ultimately decrease the care and
treatment dollars needed if HIV continues to spread at the current
rate.
AIDS Action is concerned that President Bush has only requested
$2,932,992,000 for the AIDS portfolio at NIH. AIDS Action believes the
National Institutes of Health AIDS portfolio must be funded at $3.327
billion for fiscal year 2006.
On behalf of all HIV positive Americans, and those affected by the
disease, AIDS Action Council asks that you carefully consider the
ramifications of the President's suggested cuts to the domestic HIV/
AIDS portfolio. Help us save lives by allocating sufficient funds to
address this nation's epidemic.
______
Prepared Statement of the American Academy of Family Physicians
The 94,000-member American Academy of Family Physicians submits
this statement for the record to the Senate Appropriations Subcommittee
on Labor/Health and Human Services, Education and Related Agencies. Our
statement is made in support of the Section 747 Primary Care Medicine
and Dentistry Cluster. The Academy also supports the Agency for
Healthcare Research and Quality (AHRQ) and rural health programs.
SECTION 747 PRIMARY CARE MEDICINE AND DENTISTRY CLUSTER
Family Medicine Training
Section 747 is the only federal program that funds family physician
training. The law requires the program to meet two goals: (1) increase
the number of primary care physicians (family physicians, general
internists and general pediatricians) and (2) boost the number of
people to provide care to the underserved. Regarding family medicine
specifically, Section 747 offers competitive grants for training
programs in medical school and in residency programs.
The fiscal year 2005 spending bill provided $89 million to Section
747, a figure that was $3 million below the fiscal year 2003 levels,
which is the highest figure the program has received in the last
several years. Unfortunately, the President's fiscal year 2006 budget
provided zero dollars for the program. In contrast, the congressionally
established Advisory Committee on Training in Primary Care Medicine and
Dentistry, which was set up solely to evaluate these programs,
recommended significantly more funding: $198 million.
Family physicians are the specialists trained to provide
comprehensive, coordinated and continuing care to patients of both
genders and all ages and ethnicities, regardless of medical condition.
These residency-trained, primary care physicians treat babies with ear
infections, adolescents who are obese, adults with depression and
seniors with multiple, chronic illnesses. And because they focus on
prevention, primary care, and integrating care for patients, they are
able to treat illnesses early and cost-effectively and when necessary,
they help patients navigate our complex health system and find the
right subspecialists.
Section 747 and Rural and Underserved Areas
In the last few years, there has been a great deal of interest in
whether Section 747 actually meets its statutory goals, and
specifically whether or not more physicians are practicing in rural and
underserved areas as a result of the program. Due to this concern, the
Robert Graham Center for Policy Studies studied medical schools
receiving Section 747 family medicine funds and concluded that these
programs met the law's requirements. According to this research, the
trainees exposed to Section 747 funding while in these schools were
more likely to:
--Practice in family medicine or primary care;
--Practice in a rural area; or
--Practice in a whole county Primary Care Health Professions Shortage
Area (HPSA) (i.e., a county with inadequate numbers of family
physicians, general pediatricians, general internists or
obstetrician/gynecologists).
More specifically, according to this research, students with any
exposure to Section 747 were 25 percent more likely to go into a
primary care HPSA and 34 percent more likely to go to a rural county to
practice. Moreover, the exposure of students to Section 747 funding
between 1978-1993 was associated with nearly 4,000 additional primary
care physicians in rural areas and 500 additional physicians in HPSAs
than would have otherwise occurred. This research showed that Section
747, was, in fact, meeting the goals of the law.
Preventing HPSAs
Along a similar vein, another study by the Robert Graham Center
looked at counties designated as HPSAs. The research showed that the
United States relies on family physicians more than any other medical
specialty. For example, of the more than three thousand counties in the
United States, 784 are designated HPSAs. In a hypothetical exercise,
the study removed all family physicians from the U.S. counties and
found that without these specialists, there would be 1,184 HPSAs--a 43
percent increase. Section 747 grants contribute to bringing health care
to underserved areas.
Family Physicians for Community Health Centers and NHSC
Family physicians also play a major role in staffing the nation's
Community Health Centers (CHCs) and National Health Service Corps
(NHSC). The Academy strongly supports the Administration's commitment
to funding increases for these programs. However, we believe that
increasing funding for CHCs and the NHSC is only a partial solution.
Without support for family physician training, there will be fewer
physicians who work in these centers or practice in underserved areas.
Thousands of family physicians will be needed if the necessary number
of CHCs sites and NHSC staff is to be realized.
In fact, in 2003, Community Centers depended on primary care
physicians for 95 percent of their physician staffing, over half of
whom were family or general practice physicians. And, since 1971, the
National Health Service Corps has placed more than 18,000 health care
providers in underserved areas: almost half of the NHSC doctors were
family physicians. Support for CHCs and the NHSC must go in tandem with
funding for Section 747.
Lower Health Care Costs and Improved Quality
As the only federal program aimed at producing more generalists,
Section 747 plays a role in lowering our nation's health care costs and
increasing the quality of U.S. health care. For example, an article in
Health Affairs (April 2004) demonstrated that states that spent more on
Medicare had lower quality of care. There were two reasons for this
result: states' expensive health care did not improve patient
satisfaction, or, outcomes (e.g., people who were admitted to intensive
care in the last 6 months of their life.)
The second reason was also important: the authors found the makeup
of the health care workforce made a difference. In fact, more primary
care doctors in a state meant higher quality care and lower cost. In
contrast, more specialists and fewer generalists led to lower quality
and higher costs. And, just a small increase in the number of
generalists in a state was associated with a large boost in that
state's quality ranking.
An article in a more recent edition of Health Affairs (March 2005),
``The Effects of Specialist Supply on Populations' Health: Assessing
the Evidence'' went even further. This piece stated that there is a
``negative relationship between the supply of primary care physicians
and death from stroke, infant mortality and low-birthweight, and all-
cause mortality.'' The article went on to say that just one more
primary care physician per 10,000 people was associated with a decrease
of 34.6 deaths per 100,000 population.
The article also cited breast cancer research for the state of
Florida, which indicated that ``each tenth-percentile increase in
primary care physician supply is associated with a statistically
significant 4 percent increase in odd of early-stage breast cancer. ``
Statistics were similar for other types of cancers: there was a
relationship between early identification and the supply of primary
care physicians. Numerous other research was included in the Health
Affairs article indicating that a higher ratio of primary care
physicians to populations led to better health outcomes. These data
support the need for additional funding for Section 747, the only
federal program that produces primary care physicians.
Economic Impact
In 2003, the Oklahoma Physician Manpower Training Commission
studied the amount of income that comes into a community due to the
presence of one family physician, and the additional jobs that result
from his or her practice. Their research showed that the figure was
approximately $1.2 million in rural areas and $0.9 million in urban
areas.
The Overspecialized U.S. Physician Workforce
Unlike all other developed countries, the United States does not
have a primary care-based health care system. While other developed
countries have about equal numbers of primary care doctors and
subspecialists, less than one-third of the U.S. physician workforce is
primary care doctors (including family physicians). As a result, about
two-thirds of the U.S. physician workforce is made up of
subspecialists.
In addition, compared to those in other developed countries, the
United States spends the most per capita on healthcare--but has the
worst healthcare outcomes. More than 20 years of evidence have shown
that a health system based on primary care produces greater health and
economic benefits. Boosting support for Section 747, which funds
training for family physicians and for other primary care disciplines,
could improve the health of patients in the United States to enjoy
those benefits.
AGENCY FOR HEALTHCARE, RESEARCH AND QUALITY
The Academy recommends $440 million for the Agency for Healthcare,
Research and Quality (AHRQ). A major purpose of AHRQ is to conduct
primary care and health services research geared to physician
practices, health plans and policymakers. What this means is that the
agency translates research findings from basic science entities like
the National Institutes of Health (NIH) into information that doctors
can use every day in their practices. Another key function of the
agency is to support research on the conditions that affect most
Americans.
More recently, AHRQ has become the lead federal agency for research
on comparative clinical effectiveness; information technology; and
patient safety. For example, the Medicare Modernization Act asked AHRQ
to study the ``clinical effectiveness and appropriateness of specified
health services and treatments,'' and to use this information to
improve the quality and effectiveness of the costly Medicare, Medicaid
and SCHIP programs. In fiscal year 2005, $15 million was appropriated
by Congress for this purpose, and the agency now has determined the top
10 conditions for initial research. This type of study on ``what
works'' in clinical therapies is crucial in an era of skyrocketing
health care costs and limited federal dollars.
Historically, however, AHRQ has been the lead agency to translate
research into information for physicians and patients. Over the years,
Congress has provided billions of dollars to the National Institutes of
Health, which has resulted in important insights in preventing and
curing major diseases. However, AHRQ's role has been to take this basic
science and produce understandable, practical materials for the entire
healthcare system. In short, AHRQ is the link between research and the
patient care that Americans receive.
In addition, AHRQ has long-supported research on conditions that
affect most people. Most Americans get their medical care in doctors'
offices and clinics. However, most medical research comes from the
study of extremely ill patients in hospitals. AHRQ studies and supports
research on the types of illness that trouble most people. In brief,
AHRQ looks at the problems that bring people to their doctors every
day--not the problems that send them to the hospital.
RURAL HEALTH PROGRAMS
Continued funding for rural programs is vital to provide adequate
health care services to America's rural citizens. We support the
Federal Office of Rural Health Policy; Area Health Education Centers;
the Community and Migrant Health Center Program; and the NHSC. State
rural health offices, funded through the National Health Services Corps
budget, help states implement these programs so that rural residents
benefit as much as urban patients.
CONCLUSION
The Academy urges Congress to increase funding for Section 747
family medicine training, at a minimum, to the fiscal year 2003 level
of $92 million; provide $440 million for AHRQ and support rural health
programs. Federal funding for these initiatives is vital to sustain and
improve America's health care system.
______
Prepared Statement of the American Academy of Pediatrics
This statement is submitted on behalf of the American Academy of
Pediatrics (AAP) and the endorsing organizations, the Society for
Adolescent Medicine (SAM) and the Ambulatory Pediatric Association
(APA).
There have been numerous and significant successes in improving the
health of America's children and adolescents. The number of 2-year-olds
who have received the recommended series of immunizations is at an all-
time high. Child death rates have fallen steadily over the past several
years. And teen pregnancy rates continue to decline. However, despite
these significant improvements, more than 9 million children and
adolescents through age 18 remain uninsured. Moreover, racial and
ethnic health disparities for many children and adolescents continue to
exist, while the percent of children living in poverty continues to
climb. Clearly there remains much work to do. As clinicians we must not
only diagnose and treat our patients but also promote strong preventive
interventions to improve the overall health and well-being of all
infants, children, adolescents and young adults. Likewise, as policy-
makers, you have an integral role to play in improving the health of
the next generation through adequate and sustained funding of vital
federal programs.
The AAP, SAM and APA has identified three key priorities within
this Committee's jurisdiction key priorities that are at the heart of
improving the health and well-being of America's children and
adolescents: access to health care, quality of health care, and
immunizations.
ACCESS
We believe that all children and adolescents should have full
access to health care. From the ability to receive primary care from a
pediatrician trained in the unique needs of children and adolescents,
to timely access to pediatric medical subspecialists and pediatric
surgical specialists, America's children and adolescents deserve access
to quality pediatric care.
Maternal and Child Health Block Grant.--The Maternal and Child
Health (MCH) Block Grant Program at the Health Resources and Services
Administration (HRSA) is the only federal program exclusively dedicated
to improving the health of all mothers and children. Nationwide, the
MCH Block Grant Program provides preventive and primary care services
to over 28 million women, infants, children, adolescents and children
with special health care needs. In addition, the MCH Block Grant
Program supports community programs around the country in their efforts
to reduce infant mortality, prevent injury and violence, expand access
to oral health care, and address racial and ethnic health disparities.
Moreover, the MCH Block Grant Program includes efforts dedicated to
addressing interdisciplinary adolescent training and services and
research for adolescents' physical and mental health care needs. HRSA
also supports adolescent health programs for vulnerable populations,
including health care initiatives for incarcerated and minority group
adolescents, and violence and suicide prevention. It also plays an
important role in the implementation of the State Children's Health
Insurance Program (SCHIP), which is critically important at a time when
states are continuing to suffer from ongoing deficits and shifting
costs. One of the many successful MCH Block Grant programs is the
Healthy Tomorrows Partnership for Children Program, a public/private
collaboration between the MCH Bureau and the American Academy of
Pediatrics. Established in 1989, Healthy Tomorrows has supported over
140 family-centered, community-based initiatives in over 40 states,
including Ohio, Wisconsin, Texas, California, Kentucky, and Maryland.
These initiatives have addressed issues such as access to oral and
mental health care, abstinence, injury prevention, and enhanced
clinical services for chronic conditions such as asthma. To continue to
foster these and other community-based solutions for local health
problems, in fiscal year 2006 we strongly support an increase in
funding for the MCH Block Grant Program to $755 million.
Family Planning Services.--The family planning program, Title X of
the Public Health Services Act, ensures that all teens have
confidential access to valuable family planning resources. The
consequence of adolescent pregnancy, sexually transmitted infections
(STIs), and HIV/AIDS demands that adolescents be able to make informed,
responsible sexual decisions. Title X--which does not provide funding
for abortion services--supports teens in making those decisions.
According to a January 2005 report from the Henry J. Kaiser Family
Foundation, the percentage of high school students who report ever
having had sexual intercourse has declined over the past decade, while
the rate of contraceptive use among those teens has increased.
Nevertheless, teen pregnancy rates continue to vary widely over racial
and ethnic groups, over 4 million teens still contract a sexually
transmitted infection each year, and nearly half (48 percent) of all
teens say that they want more information from--and increased access
to--sexual health care services. Responsible sexual decision-making,
beginning with abstinence, is the surest way to protect against
sexually transmitted diseases and pregnancy. However, for adolescent
patients who are already sexually active, confidential contraceptive
services, screening and prevention strategies should be available. We
therefore support a funding level in fiscal year 2006 of $350 million
for Title X of the Public Health Service Act.
Mental Health.--It is estimated that one in five children and
adolescents has a mental health problem such as depression, ADHD, or an
eating disorder, and for as many as six million this problem may be
significant enough to disturb school attendance, interrupt social
interactions, and impact quality of family life. Despite these
startling statistics, the National Institute of Mental Health (NIMH)
estimates that fewer than one in five of these children receives
treatment, due in part to stigma and the lack of affordability of care
and availability of specialists. One key point of access for helping
these children receive the mental health care they need is the
inclusion of mental health services--provided by qualified counselors,
psychologists, and social workers--in the nation's schools. Grants
through the Children's Mental Health Services program have been
instrumental in achieving decreased utilization of inpatient services,
improvement in school attendance and lower law enforcement contact for
children and adolescents. To ensure the continued and growing success
of this and other programs focusing on children and adolescents with
mental health problems, the AAP and the endorsing organizations
recommend that $114.7 million be allocated in fiscal year 2006 for the
Mental Health Services for Children program.
Health Professions Education and Training.--Critical to building a
pediatric workforce to care for tomorrow's children and adolescents are
the Training Grants in Primary Care Medicine and Dentistry, found in
Title VII of the Public Health Service Act. These grants are the only
federal support targeted to the training of primary care professionals.
They provide funding for innovative pediatric residency training,
faculty development and post-doctoral programs throughout the country.
For example, at the Cincinnati Children's Hospital, Title VII health
professions programs have funded critically important programs in
pediatric medical education. The Residency Training in Primary Care
grant is designed to train physicians for a career in primary care
pediatrics, and features a strong emphasis on behavioral and
developmental pediatrics, pediatrics in a community setting, and care
for under-represented minorities and medically underserved populations.
The community settings in which the primary care training takes place--
and, often, ultimately where the physicians chose to practice--are
federally-designated HPSAs with diverse populations. This program is
now an integral part of the Cincinnati Children's pediatric residency
training program, and widely sought after by physicians entering
training at Children's.
Through the enduring support of this subcommittee and Congress, the
Title VII program has continued to finance critically important
educational opportunities in a variety of settings that educate and
train tomorrow's generalist pediatricians to be culturally competent
and to meet the special health care needs of their communities. We
recommend fiscal year 2006 funding of at least $40 million for General
Internal Medicine/General Pediatrics. We also join with the Health
Professions and Nursing Education Coalition in supporting an
appropriation of at least $550 million in total funding for Titles VII
and VIII. We further recommend and support the Administration's
increase in funds in fiscal year 2006 for the National Health Service
Corps, a key component to ensuring an adequate distribution of health
care providers across the country, but emphasize the need for continued
support of the training and education opportunities through Title VII
for health care professionals who will work in these areas including
community health centers.
Independent Children's Teaching Hospitals.--Equally important to
the future of pediatric education and research is the dilemma faced by
independent children's teaching hospitals. Children's hospitals across
the country are critical to the care of the nation's children and play
a significant role in research and training tomorrow's pediatricians
and pediatric subspecialists. This is especially important at a time
when pediatric neurologists, gastroenterologists, and many other
specialists for children are in short supply nationally. The children's
hospitals have the critical mass of patients, physicians, and services
needed to train these specialists, and their ability to sustain their
teaching programs contributes to their ability to maintain these
services. However, these hospitals qualify for very limited Medicare
support, the primary source of funding for graduate medical education
in other inpatient environments. As a bipartisan Congress has
recognized in the past several years, equitable funding for Children's
Hospitals Graduate Medical Education is needed to continue the
education and research programs in these child- and adolescent-centered
settings. We therefore reject the Administration's reduction in funding
for this vital program and join with the National Association of
Children's Hospitals to request total funding of $309 million for the
CHGME program in fiscal year 2006 reflecting an adjustment for the cost
of inflation. The support for independent children's hospitals should
not come, however, at the expense of valuable Title VII and VIII
programs, including grant support for primary care training.
QUALITY
Access to health care is only the first step in protecting the
health of all children and adolescents. We must ensure that the care
provided is of the highest quality. Robust federal support for the wide
array of quality improvement initiatives is needed if this goal is to
be achieved.
Emergency Services for Children.--One program that assists local
communities in providing quality care to children is the Emergency
Medical Services for Children (EMSC) grant program. There are 31
million child and adolescent visits to the nation's emergency
departments every year. Children under the age of 3 years account for
most of these visits. Up to 20 percent of children needing emergency
care have underlying medical conditions such as asthma, diabetes,
sickle-cell disease, low birthweight, and bronchopulmonary dysplasia.
Providers must be educated and trained to manage these special health
care needs in emergency situations, and emergency systems must be
equipped with the resources needed to care for this especially
vulnerable population. In order to assist local communities in
providing the best emergency care to children, we urge that the EMSC
program be maintained and funded at $20 million in fiscal year 2006.
Agency for Healthcare Research and Quality.--Quality of care rests
on quality research--for new detection methods, new treatments, new
technology and new applications of science. As the lead federal agency
on quality of care research, the Agency for Healthcare Research and
Quality (AHRQ) provides the scientific basis to improve the quality of
care, supports emerging critical issues in health care delivery and
addresses the particular needs of priority populations, such as
children. Substantial gaps still remain in what we know about health
care needs for children and adolescents and how we can best address
those needs. Children are often excluded from research that could
address these issues. The AAP and endorsing organizations strongly
support AHRQ's objective to encourage researchers to include children
and adolescents as part of their research populations. We also support
increasing AHRQ's efforts to build pediatric health services research
capacity through career and faculty development awards and strong
practice-based research networks. Additionally, AHRQ is focusing on
initiatives in community and rural hospitals to reduce medical errors
and to improve patient safety through innovative use of information
technology--an initiative that we hope would include children's
hospitals as well. Through its research and quality agenda, AHRQ
continues to provide policymakers, health care providers, and patients
with critical information needed to improve health care; therefore, we
join with the Friends of AHRQ to recommend funding of $440 million for
AHRQ in fiscal year 2006.
National Institutes of Health.--Since its inception, the National
Institutes of Health (NIH) is an integral part of the public health
continuum. NIH has served as a vital component in improving the
nation's health through research, both on and off the NIH campus, and
in the training of research investigators, including pediatric
investigators. Over the years, NIH has made dramatic strides that
directly impact the quality of life for infants, children and
adolescents through biomedical and behavioral research. For example,
NIH research has led to successfully decreasing infant death rates,
increasing the survival rates from respiratory distress syndrome, and
the transmission of HIV from infected mother to fetus and infant has
dropped from 25 percent to just 1.5 percent. NIH is engaged in a
comprehensive research initiative to address and explain the reasons
for a major public health dilemma--the increasing number of obese and
overweight adults and children in this country. Today U.S. teenagers
are more overweight than young people in many other developed
countries. There is also a need for ongoing and increased biomedical
research and funding support to study pre-term delivery, etiology,
prevention and treatment regimens. In 2002, more then 480,000 babies
were born prematurely and the causes of nearly half pre-term births are
unknown. The pediatric community applauds the prior commitment of
Congress to maintain adequate funding for the NIH and we urge you to
sustain this momentum of scientific discovery. We support the
recommendation of the Ad Hoc Group for Medical Research Funding for a
funding level in fiscal year 2006 of $30 billion. In addition, to
ensure ongoing and adequate child and adolescent focused research, such
as the National Children's Study conducted at the National Institute
for Child Health and Human Development (NICHD), we join with the
Friends of NICHD Coalition in requesting $1.35 billion in fiscal year
2006.
We commend this committee's ongoing efforts to make pediatric
research a priority at the highest level of the NIH. We urge continued
federal support of NIH efforts to increase pediatric biomedical and
behavioral research, including such proven programs as targeted
training and education opportunities and loan repayment. We recommend
continued interest in and support for the Pediatric Research Initiative
in the Office of the NIH Director and sufficient funding to continue
the pediatric training grant and pediatric loan repayment programs
enacted in the Children's Health Act of 2000. This would ensure that we
have adequately trained pediatric researchers in multiple disciplines
that will not come at the expense of other important programs.
Finally, as clinicians, we know first-hand the considerable
benefits for children and society in securing properly studied and
dosed medications. The benefits of pediatric drug testing are
undisputed. Proper pediatric safety and dosing information reduces
medical errors and adverse events, ultimately improving children's
health and reducing health care costs. In a very conservative estimate,
the FDA projected savings from pediatric testing of over $228 million a
year in reduced hospitalization expenses for just five diseases
affecting children. But until now there has been little incentive for
drug companies to study off-patent drugs--older drugs that are
critically needed therapies for children. The Research Fund for the
Study of Drugs, created as part of the Best Pharmaceuticals for
Children Act of 2002, provides support for these critical pediatric
testing needs, but unfortunately is currently funded at an amount
sufficient to test only a fraction of the NIH and FDA-designated
``priority'' drugs. Therefore, we urge you to provide the NIH with
sufficient funding to fund the study of generic (off-patent) and
selected on-patent drugs for pediatric use.
We believe that these requests represent the best and most reliable
estimates of the level of funding needed to sustain the high standard
of scientific achievement embodied by the NIH. However, we encourage
Congress to explore all possible options to identify additional sources
of funding needed to support these increases if we are to reach these
funding goals while not weakening any other valuable component of the
Public Health Service.
IMMUNIZATIONS
Immunization remains one of the greatest public health achievements
of the 20th century and has saved millions of lives. Since the
widespread use of vaccines, millions of children have avoided terrible
diseases that can cause great suffering and, in some cases, death. For
example before immunization, polio paralyzed 10,000-25,000 children and
adults, rubella (German measles) caused birth defects and mental
retardation in as many as 20,000 newborns, and measles infected
millions of children, killing 400-500 and leaving thousands with
serious brain damage. Immunizations have reduced by more than 95 to 99
percent the cases of vaccine-preventable infectious diseases in this
country. And some, like rubella, are virtually eliminated from North
America, thanks to successful immunization programs.
Pediatricians, working alongside public health professionals and
other partners, have brought the United States its highest immunization
coverage levels in history. As a result, disease levels are at, or
near, record low levels. We attribute this, in part, to the Vaccines
for Children (VFC) Program and encourage Congress to maintain its
commitment to ensuring the program's viability. The VFC program
combines the efforts of public health and private pediatricians and
other health care professionals to accomplish and sustain vaccine
coverage goals for both today's and tomorrow's vaccines. It removes
vaccine cost as a barrier to immunization for some and reinforces the
concept of vaccine delivery in a ``medical home.'' However, we are
concerned that once again the Administration's fiscal year 2006
proposal to reduce funding for the Section 317 program to expand VFC is
shortsighted. Additional section 317 funding is necessary to provide
the pneumococcal conjugate vaccine (PCV-7), a vaccine that prevents an
infection of the brain covering, blood infections and approximately 7
million ear infections a year, to those remaining states that currently
do not provide it. Increased funding also is needed to purchase the
influenza vaccine. It is now recommended that young children between
the ages of 6 months and 23 months of age receive an annual influenza
vaccine. This age cohort is increasingly susceptible to serious
infection and the risk of hospitalization. And an increase in funding
is needed to purchase the recently recommended meningococcal conjugate
vaccine (MCV). Meningococcal disease is a serious illness, caused by
bacteria, with 10-15 percent of cases fatal and another 10-15 percent
of cases resulting in permanent hearing loss, mental retardation, or
loss of limbs.
The public health infrastructure that now supports our national
immunization efforts must not be jeopardized with insufficient funding.
One of the conclusions of the 2000 Institute of Medicine report,
Calling the Shots, was that unstable funding for state immunization
programs threatens coverage levels for specific populations and age
groups and vaccine safety. This continues to be true today. A strong
and sufficient infrastructure is essential. For example, adolescents
continue to be adversely affected by vaccine-preventable diseases
(e.g., chicken pox, hepatitis B, measles and rubella). Comprehensive
adolescent immunization activities at the national, state and local
levels are needed to achieve national disease elimination goals. States
and communities continue to be financially strapped and therefore, many
continue to divert funds and health professionals from immunization
clinics in order to accommodate anti-bioterrorism initiatives.
Moreover, continued investment in the CDC's immunization activities
must be made to avoid the reoccurrence of childhood vaccine shortages
by providing and adequately funding a national 6 month stockpile for
all routine childhood vaccines--stockpiles of sufficient size to insure
that significant and unexpected interruptions in manufacturing do not
result in shortages for children.
While the ultimate goal of immunizations clearly is eradication of
disease, the immediate goal must be prevention of disease in
individuals or groups. To this end, we strongly believe that CDC's
efforts must be sustained. In fiscal year 2006, we recommend an overall
increase in funding of $232 million to ensure that the CDC's National
Immunization Program has the funding necessary to accommodate vaccine
price increases, new disease preventable vaccines coming on the market,
global immunization initiatives--including funds for polio eradication
and the elimination of measles and rubella--and to continue to
implement the recommendations developed by the IOM.
CONCLUSION
We appreciate the opportunity to provide our recommendations for
the coming fiscal year. As this Subcommittee is once again faced with
difficult choices and multiple priorities we know that as in the past
years, you will not forget America's children and adolescents.
OTHER RECOMMENDATIONS FOR FISCAL YEAR 2006
DEPARTMENT OF HEALTH AND HUMAN SERVICES
------------------------------------------------------------------------
Agency Amount
------------------------------------------------------------------------
Centers for Disease Control and Prevention (total)... $8,065,000,000
Global Immunization (including polio eradication) 153,000,000
Birth Defects, Disability and Health............. 135,000,000
Newborn Hearing Screening Technical Assistance... 9,000,000
National Violent Death Reporting System.......... 10,000,000
Folic Acid Education Campaign.................... 4,000,000
Health Resources and Services Administration (total). 7,500,000,000
Newborn Screening (Title XXVI)................... 25,000,000
Newborn Hearing Screening Grants to States....... 10,000,000
Consolidated Community Health Centers............ 2,038,000,000
Substance Abuse and Mental Health Services 3,531,000,000
Administration (total)..............................
------------------------------------------------------------------------
______
Prepared Statement of the American Academy of Physician Assistants
On behalf of the more than 55,000 clinically practicing physician
assistants in the United States, the American Academy of Physician
Assistants is pleased to submit comments on fiscal year 2006
appropriations for Physician Assistant (PA) education programs that are
authorized through Title VII of the Public Health Service Act.
A member of the Health Professions and Nursing Education Coalition
(HPNEC), the Academy supports the HPNEC recommendation to provide at
least $550 million to support the Titles VII and VIII programs in
fiscal year 2006, including $18 million to support PA educational
programs, as recommended by the Advisory Committee on Primary Care
Medicine and Dentistry.
The Academy believes that the recommended increase in funding for
the Title VII health professions programs is well justified. The
programs are essential to the development and training of primary
health care professionals and contribute to the nation's overall
efforts to increase access to care by promoting health care delivery in
medically underserved communities.
The Academy is very concerned with the Administration's proposal to
eliminate funding for most Title VII programs, including zero funding
for training in primary care medicine and dentistry. As Members of the
Subcommittee are aware, these programs are designed to help meet the
health care delivery needs of the nation's Health Professional Shortage
Areas (HPSAs). By definition, the nation's more than 3,800 HPSAs
experience shortages in the primary care workforce that the market
alone can't address. 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 for
these important programs in fiscal year 2006.
OVERVIEW OF PHYSICIAN ASSISTANT EDUCATION
Physician assistant programs provide students with a primary care
education that prepares them to practice medicine with physician
supervision. PA programs are located at schools of medicine or health
sciences, universities, teaching hospitals, and the Armed Services. All
PA educational programs are intensive education programs that are
accredited by the Accreditation Review Commission on Education for the
Physician Assistant.
The typical PA program consists of 111 weeks of instruction. The
first phase of the program consists of intensive classroom and
laboratory study, providing students with an in-depth understanding of
the medical sciences. More than 400 hours in classroom and laboratory
instruction are devoted to the basic sciences, with over 70 hours in
pharmacology, more than 149 hours in behavioral sciences, and more than
535 hours of clinical medicine.
The second year of PA education consists of clinical rotations. On
average, students devote more than 2,000 hours or 50-55 weeks to
clinical education, divided between primary care medicine and various
specialties, including family medicine, internal medicine, pediatrics,
obstetrics and gynecology, surgery and surgical specialties, internal
medicine subspecialties, emergency medicine, and psychiatry. During
clinical rotations, PA students work directly under the supervision of
physician preceptors, participating in the full range of patient care
activities, including patient assessment and diagnosis, development of
treatment plans, patient education, and counseling.
Physician assistant education is competency based. After graduation
from an accredited PA program, the physician assistant must pass a
national certifying examination jointly developed by the National Board
of Medical Examiners and the independent National Commission on
Certification of Physician Assistants. To maintain certification, PAs
must log 100 continuing medical education credits over a two-year cycle
and reregister every two years. Also to maintain certification, PAs
must take a recertification exam every six years.
PHYSICIAN ASSISTANT PRACTICE
Physician assistants are licensed health care professionals
educated to practice medicine as delegated by and with the supervision
of a physician. In all states, physicians may delegate to PAs those
medical duties that are within the physician's scope of practice and
the PA's training and experience, and are allowed by law. Forty-eight
states, the District of Columbia, and Guam authorize physicians to
delegate prescriptive privileges to the PAs they supervise.
PAs are located in almost all health care settings and in every
medical and surgical specialty. Nineteen percent of all PAs practice in
non-metropolitan areas where they may be the only full-time providers
of care (state laws stipulate the conditions for remote supervision by
a physician). Approximately 41 percent of PAs work in urban and inner
city areas. Approximately 44 percent of PAs are in primary care. Nearly
one-quarter practice in surgical specialties. Roughly 80 percent of PAs
practice in outpatient settings. In 2004, an estimated 206 million
patient visits were made to PAs and approximately 250 million
medications were prescribed or recommended by PAs.
CRITICAL ROLE OF THE TITLE VII, PUBLIC HEALTH SERVICE ACT, PROGRAMS
A growing number of Americans lack access to primary care, either
because they are uninsured, underinsured, or they live in a community
with an inadequate supply or distribution of providers. The growth in
the uninsured U.S. population increased from approximately 32 million
in the early 1990s to nearly 45 million today. Simultaneously, the
number of medically underserved communities continues to rise, from
1,949 in 1986 to more than 3,800 today.
The role of the Title VII programs is to alleviate these problems
by supporting access to quality, affordable, and cost-effective care in
areas of our country that are most in need of health care services,
specifically rural and urban underserved communities. This is
accomplished through the support of educational programs that train
more health professionals in fields experiencing shortages, improve the
geographic distribution of health professionals, and increase access to
care in underserved communities.
The Title VII programs are the only federal education 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, nurses, and some allied health professions
training has 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. That is the purpose of the Title VII Public Health Service
Act Programs, which support such initiatives as loans and scholarships
for disadvantaged students, scholarships for students with exceptional
financial need, centers of excellence to recruit and train minority and
disadvantaged students, and interdisciplinary initiatives in geriatric
care and rural health care.
Furthermore, now that there is compelling evidence that race and
ethnicity correlate with persistent, and often increasing, health
disparities among U.S. populations, increasing the diversity of health
care professionals is essential. Title VII programs are unique in that
they seek to recruit providers from a variety of backgrounds. This is
particularly important, as studies have found that those from
disadvantaged regions of the country are three to five times more
likely to return to those underserved areas to provide care versus
other areas.
TITLE VII SUPPORT OF PA EDUCATION PROGRAMS
Targeted federal support for PA education programs is currently
authorized through section 747 of the Public Health Service Act. The
program was reauthorized in the 105th Congress through the Health
Professions Education Partnerships Act of 1998, Public Law 105-392,
which streamlined and consolidated the federal health professions
education programs. Support for PA education is now considered within
the broader context of training in primary care medicine and dentistry.
Public Law 105-392 reauthorized awards and grants to schools of
medicine and osteopathic medicine, as well as colleges and
universities, to plan, develop, and operate accredited programs for the
education of physician assistants and faculty, with priority given to
training individuals from disadvantaged communities. The funds ensure
that PA students from all backgrounds have continued access to an
affordable education and encourage PAs, upon graduation, to practice in
underserved communities. These goals are accomplished by funding PA
education programs that have a demonstrated track record of: (1)
placing PA students in health professional shortage areas; (2) exposing
PA students to medically underserved communities during the clinical
rotation portion of their training; and (3) recruiting and retaining
students who are indigenous to communities with unmet health care
needs.
The program works. A review of PA graduates from 1990-2003 reveals
that students graduating from PA programs supported by Title VII are 65
percent more likely to be from underrepresented minority backgrounds
and 29 percent more likely to practice in underserved settings, than
students graduating from PA programs that were not supported by Title
VII.
The PA programs' success in recruiting and retaining
underrepresented minority and disadvantaged students is linked to their
ability to creatively use Title VII funds to enhance existing
educational programs. For example, a PA educational program in Iowa
uses Title VII funds to target recruitment efforts to disadvantaged
students, providing shadowing and mentoring opportunities for
prospective students, increasing training in cultural competency, and
identifying new family medicine preceptors in underserved areas. PA
programs in Texas use Title VII funds to create new clinical rotation
sites in rural and underserved areas, including new sites in border
communities, and to establish non-clinical rural rotations to help
students understand the challenges faced by rural communities. One
Texas program uses Title VII funds for the development of web based and
distant learning technology and methodologies so students can remain at
clinical practice sites. A PA program in New York, where over 90
percent of the students are ethnic minorities, uses Title VII funding
to focus on primary care training for underserved urban populations by
linking with community health centers, which expands the pool of
qualified minority role models that engage in clinical teaching,
mentoring, and preceptorship for PA students. Several other PA programs
have been able to use Title VII grants to leverage additional resources
to assist students with the added costs of housing and travel that
occur during relocation to rural areas for clinical training.
Without Title VII funding, many of these special PA training
initiatives would not be possible. Institutional budgets and student
tuition fees simply do not provide sufficient funding to meet the
special, unmet needs of medically underserved areas or disadvantaged
students. The need is very real, and Title VII is critical in meeting
it.
NEED FOR INCREASED TITLE VII SUPPORT FOR PA EDUCATION PROGRAMS
Increased Title VII support for educating PAs to practice in
underserved communities is particularly important given the market
demand for physician assistants. Without the Title VII funding to
expose students to underserved sites during their training, PA students
are far more likely to practice in the communities where they were
raised or the communities in which they attended school. Title VII
funding is a critical link in addressing the natural geographic
maldistribution 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.
Changes in the health care marketplace reflect a growing reliance
on PAs as part of the health care team. Currently, the supply of
physician assistants is inadequate to meet the needs of society, and
the demand for PAs is expected to increase. A 1994 report of a
workgroup of the Council on Graduate Medical Education (COGME),
``Physician Assistants in the Health Workforce,'' estimated that the
anticipated medical market demand and the estimated workforce
requirements for PAs would exceed supply. Additionally, the Bureau of
Labor Statistics projects that the number of available PA jobs will
increase 49 percent between 2002 and 2012. Title VII funding has
provided, and continues to provide, a crucial pipeline of trained PAs
to underserved areas. One way to assure an adequate supply of physician
assistants, especially PAs likely to practice in underserved areas, is
to continue offering financial incentives, such as funding preferences,
to PA programs that emphasize recruitment and placement of people
interested in primary health care in medically underserved communities.
Despite the increased demand for PAs, funding has not
proportionately increased for the Title VII programs that are designed
to educate and place physician assistants in underserved communities.
Nor has the Title VII support for PA education kept pace with increases
in the cost of educating PAs. A review of PA program budgets from 1984
through 2003 indicates an average annual increase of seven percent, a
total increase of 245 percent over the past 19 years, yet federal
support has remained relatively static.
RECOMMENDATIONS ON FISCAL YEAR 2006 FUNDING
The American Academy of Physician Assistants urges members of the
Appropriations Committee to consider the inter-dependency of all the
public health agencies and programs when determining funding for fiscal
year 2006. For instance, while it is important to fund clinical
research at the National Institutes of Health (NIH) and to have an
infrastructure at the Centers for Disease Control (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 cutting edge research discovered at NIH to the
patients--through providers such as PAs who have been educated in Title
VII-funded programs. Likewise, CDC is heavily dependent upon an
adequate supply of health care providers to be sure that disease
outbreaks are reported, tracked, and contained.
The critically important programs administered by NIH, HRSA, and
CDC are integral components within the nation's public health
continuum. One component is not more important than another, and no one
component can succeed without adequate support from each of the other
elements.
Furthermore, while the Academy applauds the Administration's
proposal to strengthen national security by increasing support for
health emergency preparedness initiatives, it should not do so at the
expense of Title VII programs. Training is the key to preparedness, and
Title VII, section 747, is an ideal mechanism for educating primary
care providers in public health competencies, facilitating population
based and community-based skills and training, and increasing the
alliance between public health and primary care providers. This is
particularly important for our Nation's most disadvantaged and
underserved populations, because they are the most vulnerable during
medical emergencies because of a lack of resources and access to care.
The Academy respectfully requests that the Title VII and VIII
health professions programs receive $550 million in funding for fiscal
year 2006, including $18 million to support PA educational programs, as
recommended by the Advisory Committee on Primary Care Medicine and
Dentistry.
Thank you for the opportunity to present the American Academy of
Physician Assistants' views on fiscal year 2006 appropriations.
______
Prepared Statement of the American Association of Nurse Anesthetists
(AANA)
FISCAL YEAR 2006 APPROPRIATIONS REQUEST SUMMARY
----------------------------------------------------------------------------------------------------------------
Fiscal year 2005 actual Fiscal year 2006 budget AANA request
----------------------------------------------------------------------------------------------------------------
HHS /HRSA /BHPr Title VIII Advanced Awaiting grant allocations Grant allocations not $3,000,000
Education Nursing, Nurse Anesthetist $3.5 MM fiscal year 2004. specified.
Education Reserve.
Title VIII HRSA BHPr Nursing Education $150,674,000.............. $150,471,000.............. 210,000,000
Programs.
----------------------------------------------------------------------------------------------------------------
Chairman Specter, Ranking Member Harkin, and members of the
Subcommittee: The AANA is the professional association for more than
30,000 Certified Registered Nurse Anesthetists (CRNAs) and student
nurse anesthetists representing over 90 percent of the nurse
anesthetists in the United States. Today, CRNAs are directly involved
in approximately 65 percent of all anesthetics given to patients each
year in the United States. CRNA services include administering the
anesthetic, monitoring the patient's vital signs, staying with the
patient throughout the surgery, as well as providing acute and chronic
pain management services. CRNAs provide anesthesia for a wide variety
of surgical cases and are the sole anesthesia providers in almost 70
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.
Having provided anesthesia since the Civil War, masters' educated
nurse anesthetists today have set for ourselves the most rigorous
continuing education and recertification requirements in the field. We
are humbled and honored that the Institute of Medicine reported in 1999
that anesthesia is 50 times safer than 20 years ago. And a recent study
by Dr. Michael Pine of over 400,000 cases in 22 states involving CRNAs,
anesthesiologists, or both together finds ``the type of anesthesia
provider does not affect inpatient surgical mortality.'' In addition, a
recent AANA workforce study's data showed that CRNAs and
anesthesiologists are substitutes in the production of surgeries.
Through continual improvements in research, education, continuing
education and practice, nurse anesthetists are vigilant to continue
improving patient safety.
And CRNAs provide the lion's share of the anesthesia care required
by our U.S. Armed Forces through active duty and the reserves, from
here at home to the leading edge of the field of battle. In May 2003,
at the beginning of ``Operation Iraqi Freedom'' 364 CRNAs had been
deployed to the Middle East to ensure military medical readiness
capabilities. For decades CRNAs have staffed ships, remote U.S.
military bases, and forward surgical teams without physician
anesthesiologist support.
IMPORTANCE OF TITLE VIII NURSE ANESTHESIA EDUCATION FUNDING
Our chief request before the Subcommittee today, for at least $3
million to be reserved for nurse anesthesia education from Title VIII,
is based on two facts. First, there is a 12 percent vacancy rate of
nurse anesthetists in the United States impacting people's healthcare.
And second, the Title VIII program supported strongly by members of
this Subcommittee in the past is an effective means to help address the
nurse anesthesia workforce demand. This demand for CRNAs is something
we as a profession are addressing every day with success, and with the
critical assistance of federal funding through HHS' Title VIII
appropriation.
In 2003 the AANA conducted a nurse anesthesia workforce study,
which concluded a 12 percent vacancy rate in hospitals for CRNAs, and a
lower vacancy rate in ambulatory surgical centers for 2002. The supply
has increased in recent years, stimulated by increases in the number of
CRNAs trained. However, these increases had not been enough to offset
the number of retiring CRNAs. This trend, as of 2003, will require
raising the number of nurse anesthesia graduates to fill the growing
vacancy rate. This is compounded by rising number of Medicare-eligible
Americans, from about 34 million today, to more than 40 million in
2010, who will require the care that CRNAs provide.
The problem is not that our 94 accredited schools of nurse
anesthesia are failing to attract qualified applicants. These CRNA
schools are located all across the country including ten in
Pennsylvania, five each in Ohio and Florida and Texas, four each in
Illinois and New York, three each in California and Connecticut and
Maryland, two in Rhode Island, and one in Wisconsin. It is that they
are full. Each CRNA school continues to turn away qualified
applicants--bachelor's educated nurses who had spent at least one year
serving in a critical care environment. Recognizing the importance of
nurse anesthetists to quality healthcare, the AANA has been working
with its 94 accredited schools of nurse anesthesia to increase the
number of qualified graduates, and to expand the number of CRNA
schools. The Council on Accreditation of Nurse Anesthesia Educational
Programs (COA) reports that in 1999, our schools produced 948 new
graduates. By 2005, that number had increased to 1,628, a 72 percent
increase in just five years. The growth is expected to continue. The
COA projects CRNA schools to produce 1,800 graduates in 2005. But to
meet the challenge, we simply must continue expanding the capacity and
number of CRNA schools. With the help of competitively awarded Title
VIII funding, we are making significant progress, expanding both the
number of clinical practice sites and the number of graduates.
We are pleased to report that 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. And we know what the Pine
study confirms, ``the type of anesthesia provider does not affect
inpatient surgical mortality.'' Yet, for what it costs to train just
one anesthesiologist, eleven CRNAs may be educated for the same task at
the same superlative level of safety. This represents an eleven to one
educational cost/benefit for supporting CRNA educational programs with
federal dollars vs. supporting other anesthesia providers' education.
This also contributes to a three or four to one anesthesia delivery
cost/benefit. These ratios represent a cost/benefit unprecedented in
any other healthcare specialty.
So is this $3 million Title VIII investment in nurse anesthesia
education effective? In February 2003, AANA surveyed its CRNA school
program directors, to gauge the impact of the Title VIII funding. Of
those that had reported receiving competitive Title VIII Nurse
Education and Practice Grants funding, and there were eleven such
schools from 1998 to 2003, they said they on average had increased
their number of graduating CRNAs by more than 15 each per year. They
reported on average more than doubling their number of CRNA graduates
per school, who provide care to patients during and following their
education. Moreover, they reported producing additional CRNAs that went
to serve in rural or medically underserved areas. Under both of these
circumstances, an increased number of student nurse anesthetists and
CRNAs are providing healthcare to the people of medically underserved
America.
We believe it is important for the Subcommittee to allocate $3
million for nurse anesthesia education for several reasons. First, as
we have shown, the funding is cost-effective and well-needed. Second,
the Title VIII authorization previously providing such a reserve
expired in September 2002. The amount we request is consistent with
what Title VIII provided in fiscal year 2001. Third, this particular
funding is important because nurse anesthesia for rural and medically
underserved America is not affected by increases in the budget for the
National Health Service Corps and community health centers, since those
initiatives are for delivering primary and not surgical healthcare.
And, last, this funding meets an overall objective to increase access
to quality healthcare in medically underserved America.
TITLE VIII FUNDING FOR STRENGTHENING THE NURSING WORKFORCE
Mr. Chairman, the AANA joins a growing coalition of nursing
organizations and others in support of the Subcommittee providing a
total of $210 million in fiscal year 2006 for nursing shortage relief
through Title VIII. This amount is approximately $60 million over the
fiscal year 2005 level, and over the President's fiscal year 2006
budget. Every district in America is familiar with the importance of
nursing.
I understand that this request is a significant increase over the
President's request. Thanks to your leadership and that of the
Subcommittee, Congress increased nurse education funding $5 million
over the President's request in fiscal year 2005 for which we are
grateful, though we are concerned the Division of Nursing ``expert
panel'' report that motivated requests to reduce Advanced Education
Nursing is itself fraught with shortfalls, pitfalls and problems.
Another perspective is that America spends more than $1.7 trillion
on healthcare this year, paid by private and public sources. About $298
billion of that is estimated to be Medicare outlays in 2005. About $8.7
billion of that Medicare funds direct and indirect GME, with some 99
percent of that funding helping to educate physicians and allied health
professionals, and about 1 percent to help educate nurses. $301 million
of the fiscal year 2005 appropriations bill supports a GME-type program
for pediatricians through children's hospitals. These are all worthy
things. But for every present and future healthcare patient, Congress
must put some focus on nurses and nurse anesthesia care.
From each dollar America spends in healthcare our request is that
the federal government should allocate at least 15 thousandths of a
cent to ensure we have enough nurses, and at least two ten-thousandths
of a cent to ensure we have the safe anesthesia care we need when we
need it. This action will improve patients' healthcare, and strengthen
seniors' Medicare, all at once.
Thank you.
______
Prepared Statement of the American College of Obstetricians and
Gynecologists
The American College of Obstetricians and Gynecologists (ACOG), on
behalf of its 46,000 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 Specter, Ranking Member Harkin, and the entire
subcommittee for their leadership to continually address maternal and
child health care services.
The Nation has made important strides to improve women and
children's health over the past several years, and ACOG is grateful to
this Committee for its commitment to research. We look forward to
working with the Members of this Committee to ensure that vital
research continues to eliminate disease and to ensure valuable new
treatment discoveries are implemented. The NIH has examined and
determined many disease pathways, while the Health Resources and
Services Administration has been successful in translating research
findings into valuable public health policy solutions. This dedicated
commitment to elevate, promote and implement medical research faces an
uncertain future at a time when scientists are on the cusp of new
cures.
It is vital that the Committee provide strong support for current
studies, and for future advances, as well. We urge the Committee to
support a 6 percent increase for the National Institutes of Health
(NIH) in fiscal year 2006, and a 6 percent increase for the National
Institute of Child Health and Human Development (NICHD). We also
continue to support efforts to secure adequate funds for important
public health programs such as the Health Resources and Services
Administration (HRSA). Continued appropriations to these agencies will
ensure ongoing and new research initiatives continue to yield positive
results for women and children's health.
NATIONAL INSTITUTES OF HEALTH--RESEARCH LEADING THE WAY
Ob-Gyn Representation on the NICHD Advisory Council
ACOG is most concerned that research conducted through the National
Institute on Child Health and Human Development (NICHD) receives
adequate funding, that the Institute can attract new ob-gyn
researchers, and that individuals who have expertise and knowledge
about its work guide NICHD.
NICHD has overseen tremendous advancements for women including
improving pregnancy and childbirth outcomes, and identifying cures for
diseases and conditions affecting women of all ages and at all stages
in life. NICHD is, in fact, the Institute where the vast majority of
ob-gyn related research takes place and the only Institute where ob-
gyns have a prominent role. It's critical, then, to require that the
NICHD Advisory Council include an adequate number of individuals who
have distinguished themselves in ob-gyn clinical practice and research.
Currently, this important Council, which guides the Institute's
research funding decisions, is composed of 17 appointed members,
including pediatricians, ob-gyns, sociologists, biologists, media
consultants, and nurses. The ob-gyns on the Council bring years of
expertise and knowledge of women's health care needs, research
priorities, and the impact of research discoveries on women's lives. In
November 2004, the number of ob-gyns on the Council was reduced from 3
to 2.
ACOG worked actively with the NICHD to advocate the appointment of
another ob-gyn to this position, and we are deeply troubled that NICHD
filled this position with an attorney, rather than with another ob-gyn.
Research conducted at NICHD helps shape the future of women's health
care. Women across America and the world suffer from issues of maternal
morbidity, uterine fibroids, vulvodynia and numerous other health care
issues that are far from being understood and cured. The world faces
global challenges, too, of the spread of sexually transmitted diseases,
which have barely been acknowledged, much less challenged and defeated.
The NICHD Advisory Council must include an adequate number of ob-
gyns who are experts in these clinical and research areas. We object
strongly to any attempt to reduce the ability of our specialty to
contribute to the research direction of this Institute which is
obviously so critical to the area that we know better than any other
group or medical specialty--women's health.
We look to Congress to amend the NICHD statute to require that its
Advisory Council include no fewer than three experts in the field of
ob-gyn. This action is necessary to ensure that decisions that will
affect the future of women's health care are made by individuals with
expertise and a deep level of commitment to the field. We hope to work
actively with this Committee and the Congress to restructure the
Council representation requirements.
Research at the NICHD
The NICHD conducts research that holds great promise to improve
maternal and fetal health and safety. With the support of Congress, the
Institute has initiated research addressing the causes of cerebral
palsy, gestational diabetes and pre-term birth. However, much more
needs to be done to reduce the rates of maternal mortality and
morbidity in the United States. More research is needed on such
pregnancy-related issues as the impact of chronic conditions during
pregnancy, racial and ethnic disparities in maternal mortality and
morbidity, and drug safety with respect to pregnancy.
A commitment to research in maternal health sheds light on a
breadth of issues that save women's lives. Important research examining
the following issues must continue:
Reducing High Risk Pregnancies
NICHD's Maternal Fetal Medicine Unit Network, working at 14 sites
across the United States (University of Alabama, University of Texas-
Houston, University of Texas-Southwestern, Wake Forest University,
University of North Carolina, Brown University-Women and Infant's
Hospital, Columbia University, Drexel University, University of
Pittsburgh-Magee Women's Hospital, University of Utah, Northwestern
University, Wayne State University, Case Western University, and Ohio
State University), will help reduce the risks of cerebral palsy,
caesarean deliveries, and gestational diabetes. This Network discovered
that progesterone reduces preterm birth by one-third.
Reducing the Risk of Perinatal HIV Transmission
In the last 10 years, NICHD research has helped decrease the rate
of perinatal HIV transmission from 27 percent to 1.2 percent. This
advancement signals the near end to mother-to-child transmission of
this deadly disease.
Reducing the Effects of Pelvic Floor Disorders
The Institute has made recent advancements in the area of pelvic
floor disorders. The NICHD is investigating whether women that have
undergone cesarean sections have fewer incidences of pelvic floor
disorder than women who have delivered vaginally.
Reducing the Prevalence of Premature Births
NICHD is helping our Nation understand how adverse conditions and
health disparities increase the risks of premature birth in high-risk
racial groups.
Drug Safety During Pregnancy
The NICHD recently created the Obstetric and Pediatric Pharmacology
Branch to measure drug metabolism during pregnancy.
The Challenge of the Future: Attracting New Researchers
Despite the NICHD's critical advancements, reduced funding has made
it difficult for this research to continue, largely due to the lack of
new investigators. Congressional programs such as the loan repayment
program, the NIH Mentored Research Scientist Development Program for
reproductive health, and a small grant program, all attract new
researchers, but low pay lines make it difficult for the NICHD to
maintain these researchers. Due to the structure of the peer review
system, previous grant recipients have an advantage because their
grants require fewer funds. This makes it more difficult for new
investigators to get into the system, jeopardizing the future of
women's health research. We urge the Committee to significantly
increase funding at the NICHD to maintain a high level of research
innovation and excellence, in turn reducing the incidence of maternal
morbidity and mortality and discovering cures for other chronic
conditions.
HEALTH RESOURCES AND SERVICES ADMINISTRATION: TURNING RESEARCH INTO
SOLUTIONS
It is critical that we rapidly transform women's health research
findings into public health solutions. The Health Resources and
Services Administration (HRSA) has created women and children's health
outreach programs based on research conducted on prematurity, high risk
pregnancies, gestational diabetes, and a variety of other health
issues. The National Fetal Infant Mortality Review and the Provider's
Partnership are two examples of the successful programs under the
Healthy Start Initiative.
For example, research shows tobacco abuse and health disparities
are risk factors for infant mortality. Healthy Start offers programs
for states, which fund provider and community education programs that
improve maternal health through tobacco cessation programs, and finds
ways to decrease the infant mortality rate by investigating cultural
and institutional health disparities.
NATIONAL FETAL INFANT MORTALITY REVIEW
The Fetal and Infant Mortality Review (FIMR) is a cooperative
federal agreement between ACOG and the Maternal Child Health Bureau at
HRSA. FIMR uses the expertise of ob-gyns and local health departments
to find solutions to problems related to infant mortality. In light of
the recent increase in the infant mortality rate for 2002, the FIMR
program is vital to develop community-specific, culturally appropriate
interventions. Today 220+ local programs in 42 states are implementing
FIMR and finding it is a powerful tool to bring communities together to
address the underlying problems that negatively affect the infant
mortality rate.
In order to meet the demand of the increasing number of FIMR
programs, NFIMR must be able to continue its activities at an adequate
funding level. A rigorous national evaluation of FIMR conducted by
Johns Hopkins University has concluded that the FIMR methodology is an
effective perinatal initiative. Based on that new research, FIMR can
now be called an evidence based MCH intervention. All Healthy Start
programs and every locality with disparities in infant outcomes should
be actively encouraged to implement this FIMR process.
We urge this Committee to recognize the many positive contributions
of the FIMR program and ensure it remains a fully funded program within
HRSA.
PROVIDER'S PARTNERSHIP
Through May 2003, HRSA funded the Provider's Partnership, a
cooperative agreement between the Federal Maternal and Child Health
Bureau and ACOG. This Partnership includes a series of state-level
projects initiated to address key women's health issues, while
simultaneously building partnerships between ACOG Members and public
health leadership.
The Partnership works specifically with psychosocial issues that
greatly impact the health and well being of women. The morbidity and
mortality attributed to issues such as a woman's depression, tobacco
use, substance abuse and domestic violence are becoming increasingly
apparent as they weigh on both the woman and her entire family. Without
treatment, these psychosocial issues place a heavy financial burden on
state and federal resources. Obstetrician-gynecologists play a critical
role in addressing these problems within their current practice,
however because of the complexity and the importance of promptly
linking at-risk women with appropriate services, responsibility for
full psychosocial assessment and treatment cannot fall solely on
obstetrician-gynecologists. Partnerships between women's health care
physicians and state and community programs are needed that allow for
integration of medical care with psychosocial services. Partnerships
increase coordination thereby minimizing demands on both the behavioral
health care system and individual providers. Provider's Partnership
enables stakeholders to improve prevention interventions, so that later
complications can be avoided.
There are currently 30 state-level Partnership teams focused on
depression in women, tobacco use, perinatal HIV transmission and oral
health. These teams have been successful at surveying obstetric
providers on their screening; counseling and referral practices for
perinatal depression and tobacco use, the results of which have been
the basis for the development of statewide legislative and practice
policy guidelines; establishing pilot screening and intervention
initiatives for depression in women; and instituting provider training
and technical assistance for depression and tobacco use screening and
intervention. Despite their successes, these teams still struggle for
funds to offset administrative and program costs. Representatives from
additional states have expressed an interest in developing an ACOG
Provider's Partnership, however, any new efforts are being postponed
until additional funding can be identified.
Interagency cooperation to address the multiple factors that affect
maternal and child health will help us increase our Nation's overall
health. By continuing to translate research done at the NICHD on high-
risk pregnancies, drug metabolism, and preterm births, into positive
outreach programs such as NFIMR and the Provider's Partnership, we can
further improve maternal health and reduce infant mortality.
Again, we would like to thank the Committee for its continued
support of maternal and child health research and programs. We strongly
urge this Committee to support increased funding for the National
Institute of Child Health and Human Development (NICHD), and renewed
appropriations for the National Fetal Mortality Review (NFIMR) and the
Provider's Partnership programs. This funding would significantly
increase the number of women and families who benefit from smoking
cessation programs, depression screening, and community specific
solutions to infant mortality. Through joint community and government
efforts we can decrease the harmful consequences these issues have on
the Nation's health.
We further urge the Committee and the Congress to pass a
requirement that the NICHD Advisory Council include no fewer than three
experts in the field of ob-gyn, to ensure a bright future for
advancements in women's health.
______
Prepared Statement of the American Heart Association
Heart disease, stroke and other cardiovascular diseases kill more
Americans each year than the next 5 leading causes of death combined,
putting people of all ages at risk. Cardiovascular diseases remain our
nation's No. 1 killer and a major cause of disability. We are concerned
that our government is still not devoting sufficient resources for
research and prevention to America's No. 1 killer--heart disease--and
to our country's No. 3 killer--stroke.
STILL NO. 1--AN UNHAPPY DISTINCTION
Cardiovascular diseases represent a continuing crisis of pandemic
proportions. More than 70 million Americans suffer from these diseases,
and risk factors are on the rise. About 65 percent of American adults
are overweight or obese and an estimated 9.2 million children and
adolescents ages 6-19 are overweight or obese. Also, an estimated 65
million Americans have high blood pressure, nearly 38 million adults
have high cholesterol, and nearly 14 million have diagnosed diabetes.
Cardiovascular diseases cost Americans more than any other disease--an
estimated $394 billion in medical expenses and lost productivity in
2005. Heart defects are the most common birth defect and cause more
infant deaths than any other birth defect.
HEART DISEASE AND STROKE. YOU'RE THE CURE
Now is the time to capitalize on our progress in understanding
heart disease, stroke and other cardiovascular diseases. Promising,
cost-effective breakthroughs in treatment and prevention are available,
and new ones are on the horizon. A continued, sustained investment in
the NIH and appropriate funding for NIH heart disease and stroke will
support critically needed new initiatives, especially in the
translation of that research into useful clinical and state programs.
For fiscal year 2006, we urge you to:
Appropriate $30 billion for the National Institutes of Health (NIH)--to
provide a continued, sustained investment in life-saving
medical research
NIH research provides new treatment and prevention strategies,
creates jobs, and maintains America's status as the world leader in the
biomedical and biotechnology industries.
Provide $2.3 billion for NIH heart research and $341 million for NIH
stroke research
Researchers are on the brink of advances to enhance prevention and
to provide new treatments so you and your loved ones can be spared the
pain and suffering of heart disease and stroke. For example, the impact
of co-morbidities on the progression of atherosclerosis and on its
prevention and treatment needs further study. In terms of the well-
recognized epidemic of obesity, research is needed on the science of
weight regulation, on both the genetic and environmental bases of
obesity, and on nutrition and exercise science. Inter-Institute
communication and joint programs, which have been encouraged by the
Director, should continue to grow, particularly in areas such as growth
and development, atherosclerosis, obesity and diabetes among others.
Allot $55.6 million for Heart Disease and Stroke for the CDC to expand,
intensify and coordinate prevention initiatives such as the
State Heart Disease and Stroke Prevention Program and the Paul
Coverdell National Acute Stroke Registry
Science must be translated into state programs that hearten
Americans to make healthy lifestyle choices to avert and control heart
disease and stroke and track and improve stroke care delivery.
Allocate $15 million to continue to help rural and community areas
treat cardiac arrest in time to save lives by initiating
automated external defibrillator (AEDs) programs
The Rural Access to Emergency Devices Act (part of Public Law 106-
505) and the Community Access to Emergency Defibrillation Act (part of
Public Law 107-188) help rural and community areas purchase AEDs and
train emergency and lay responders in their use.
HEART AND STROKE RESEARCH BENEFITS ALL AMERICANS
Thanks to advances in addressing risk factors and in treating
cardiovascular diseases, more Americans are surviving these often
deadly and disabling diseases. Heart disease and stroke research,
prevention and treatment breakthroughs are saving and improving lives.
Several examples follow.
Automated External Defibrillator.--Each year, 250,000 Americans die
from cardiac arrest. Training volunteers to perform cardiopulmonary
resuscitation and to use an AED--a briefcase-size device that shocks
the heart into a normal rhythm--distributed in shopping malls, sports
venues and other public places can double the survival rate of cardiac
arrest victims.
Implantable Cardioverter Defibrillator.--An ICD, which provides an
electrical impulse to correct an often fatal irregular heart beat,
notably reduces deaths in heart failure patients. So, the government
announced an expansion of the number of Medicare recipients eligible to
receive ICDs. They estimate that about 25,000 Medicare beneficiaries
will receive ICDs in the first year, possibly saving up to 2,500 lives.
These patients are required to share information about their condition,
so medical professionals can assess which individuals are helped the
most by ICDs.
Women and Low-Dose Aspirin.--A study found that low-dose aspirin on
alternative days did not prevent first heart attacks or death from
cardiovascular diseases in women, but clot-based strokes were
significantly reduced, with the greatest benefit in women age 65 and
older.
Ultrasound in Combination with tPA Enhances Drug's Effectiveness
Against Stroke.--Tissue plasminogen activator (tPA) effectively
dissolves clots that are causing an acute clot-based stroke. But, using
ultrasonography, a non-invasive technique that uses sound waves, in
combination with tPA improves the drug's clot busting abilities,
leading to improved chances for a better recovery from stroke.
We join other members of the research community in advocating for
an fiscal year 2006 appropriation of $30 billion for the NIH to provide
a continued, sustained investment in life-saving medical research and
support investigation into new therapies. The NIH budget for heart
disease and stroke remains disproportionately under-funded compared to
the enormous burden of these diseases and the numerous promising
scientific opportunities that could advance the fight against these
disorders. Heart disease, stroke and other cardiovascular diseases meet
the NIH's criteria for priority setting (public health needs,
scientific quality of research, scientific progress potential,
portfolio diversification and adequate infrastructure support), but the
NIH continues to invest only 7 percent of its budget on heart research
and a mere 1 percent on stroke research. We have a particular interest
in individual NIH components that relate directly to our mission. Our
funding recommendations for these Institutes follow.
HEART RESEARCH CHALLENGES AND OPPORTUNITIES FOR NHLBI
Advances have been made by more than 50 years of American Heart
Association-funded research and more than a half-century of investment
by Congress in the National Heart, Lung, and Blood Institute. While
more people survive heart disease and stroke, they can cause permanent
disability, requiring costly medical care and loss of productivity and
quality of life.
We urge this Committee to appropriate funding for the NHLBI and for
its heart disease and stroke-related efforts to support and expand
current activities and to invest in promising and critically needed new
initiatives to aggressively advance the battle against heart disease
and stroke. To accomplish this goal, we advocate an appropriation of
$3.1 billion for the NHLBI, including $1.9 billion for heart disease
and stroke. This added investment is needed to focus on heart disease
and stroke challenges and opportunities. Several of these follow.
Heart Failure Clinical Research Network.--Despite advances in
treatment, the number of new cases and the number of Americans
suffering from heart failure continue to grow. And, the long-term
prognosis for patients remains poor. A planned research network with
the capability of implementing multiple concurrent clinical studies
would conduct clinical studies of new approaches to improve outcomes
and would provide an infrastructure to enable rapid translation of
promising research findings into patient care.
Novel Targets and Therapy Development for Clot-based Stroke.--There
is only one FDA-approved emergency treatment for clot-based stroke: t-
PA. However, fewer than 5 percent of patients receive it, largely
because it must be given within three hours from the onset of symptoms.
To address an urgent need to develop new therapies, the NHLBI and the
National Institute of Neurological Disorders and Stroke (NINDS) have
planned a collaborative effort to identify new molecular targets,
explore promising agents, and develop innovative therapies to quickly
restore blood flow to the brain and limit stroke damage.
Technologies for Engineering Small Blood Vessels.--A need exists to
develop alternatives to natural blood vessels for patients who require
heart artery bypass surgery and for children born with complex heart
defects because the supply of native blood vessels to use as grafts
does not meet the demand and prosthetic grafts fail at an unacceptable
rate. Planned research would address the development of functional,
small blood vessel substitutes.
Specialized Centers of Clinically Oriented Research for Vascular
Injury, Repair, and Remodeling.--The NHLBI has planned a new SCCOR
program to conduct interdependent clinical and multidisciplinary basic
research projects on the molecular and cellular mechanisms of vascular
(blood vessel) injury, repair, and remodeling. This program would
promote patient-oriented research to improve prevention, detection, and
treatment of vascular diseases, such as stroke. The SCCORs would
provide resources to enable new clinical investigators to develop
skills and research capabilities to conduct relevant research in this
area.
STROKE RESEARCH CHALLENGES AND OPPORTUNITIES FOR NINDS
Stroke is the No. 3 killer of Americans and a major cause of
permanent disability. Many of America's 5.4 million stroke survivors
face debilitating physical and mental impairment, emotional distress
and huge medical costs. About 1 in 4 stroke survivors is permanently
disabled. An estimated 700,000 Americans will suffer a stroke this
year, and nearly 163,000 will die. In addition to the elderly, stroke
also strikes newborns, children and young adults.
We urge you to provide sufficient funding for the NINDS to support
and expand current activities and to invest in promising and critically
needed new initiatives to aggressively prevent stroke, protect the
brain during stroke and enhance rehabilitation. To accomplish this
goal, we advocate for an fiscal year 2006 appropriation of $1.6 billion
for the NINDS, including $183 million for stroke. Some challenges and
opportunities follow.
Strategic Stroke Research Plan.--As a result of congressional
report language during the fiscal year 2001 appropriations process, the
NINDS convened a Stroke Progress Review Group (SPRG). Their report
serves as a guide for a long-range strategic planning for stroke and
includes 5 research priorities and 7 resource priorities to be
addressed in the coming years. Multiple scientific programs initiated
since the SPRG report are making impressive progress. But, more funding
is needed to continue to implement these activities and other
components of the plan.
Emerging Stroke Risk Factors.--Although more Americans are
controlling major stroke risk factors, such as high blood pressure and
smoking, the number of stroke victims continues to rise. Scientists are
defining new risk factors and re-examining the role of existing ones.
Researchers are studying the role of inflammation in damaging arteries,
heart valve disease, irregular heartbeats, and the long-term effects of
high blood pressure. Increased funding for new approaches in these
areas may lead to new ways to prevent stroke.
Therapeutic Strategies for Stroke.--Several major clinical trials
have identified new methods for preventing and treating stroke in high-
risk populations, including stroke survivors. But, as the number of
strokes increases and disparities in treatment persist, funding for
translational and clinical studies is vital to providing cutting-edge
stroke treatment and prevention.
Stroke Education.--As a member of the Brain Attack Coalition,
organizations devoted to fighting stroke, we work with the NINDS to
increase public awareness of stroke symptoms and the need to call 9-1-
1. Together, we initiated a public education campaign, Know Stroke:
Know the Signs, Act in Time, and we are striving to develop systems to
make tPA available to appropriate patients. In partnership with the
CDC, the NINDS extended this campaign to launch a grassroots program
called Know Stroke in the Community to enlist the aid of ``Stroke
Champions'' who educate communities about stroke signs and symptoms. A
pilot phase of the program in 5 cities has just been completed. When
these measures are implemented, stroke treatment will shift from
supportive care to early brain-saving intervention. But more funding is
needed to educate the public and health providers about stroke.
RESEARCH IN OTHER NIH INSTITUTES BENEFIT HEART DISEASE AND STROKE
Research seeking to prevent and find better treatments for heart
disease, stroke and other cardiovascular diseases is supported by other
NIH entities like the National Institute on Aging, the National
Institute of Diabetes and Digestive and Kidney Diseases, the National
Institute of Nursing Research, the National Institute of Child Health
and Human Development and the National Center for Research Resources.
It is important to provide sufficient additional resources for these
entities to continue and expand their critical work.
AGENCY FOR HEALTHCARE RESEARCH AND QUALITY
The AHRQ is a critical partner with the public and private health
care sectors. They help develop evidence-based information needed by
consumers, providers, health plans and policymakers to improve health
care decision making. We join with the Friends of AHRQ in advocating
for an appropriation of $440 million for the AHRQ to advance health
care quality, cut medical errors and expand the availability of health
outcomes information.
CENTERS FOR DISEASE CONTROL AND PREVENTION
Prevention is the best way to protect Americans' health and ease
the financial and human burden of disease. Resources must be made
available to bring the benefits of research to places where heart
disease and stroke strike--our towns and neighborhoods. The CDC builds
a bridge between what we learn in the lab, translating findings into
programs in the communities where we live. We advocate an fiscal year
2006 appropriation of $8.7 billion for the CDC, with a 10 percent
increase over current funding for state-based chronic disease
prevention and health promotion programs.
Within that figure, we support an appropriation of $55.6 million
for the CDC's Heart Disease and Stroke line--which would bring per
capita spending for heart disease, stroke and other cardiovascular
disease prevention from 10 cents to about 12 cents. This would allow
the CDC to better expand, intensify and coordinate prevention
activities against these diseases, such as enhancing the State Heart
Disease and Stroke Prevention Program and the Paul Coverdell National
Acute Stroke Registry. It would also allow the CDC to begin the
development of a state-based cardiac arrest registry, augment current
health communication projects on heart attack and stroke signs and
symptoms, as well as public and health care provider education; and
support critical standardization of lipid and other measurements.
We commend Congress for encouraging the CDC to create a Heart
Disease and Stroke Division. With ample resources and capacity, a
Division would further enable CDC's efforts in this area. Thanks to
this Committee's support since fiscal year 1998, the CDC's State Heart
Disease and Stroke Prevention Program covers 33 states, allowing them
to design and/or implement state-tailored prevention programs. But only
12 states receive funding to actually implement programs to prevent and
control heart disease and stroke. The other 21 states were only
provided funds to support program planning; which is now largely
complete. Since cardiovascular diseases remain the No. 1 killer in
every state, each state needs funding for basic implementation of a
State Heart Disease and Stroke Prevention Program. With fiscal year
2005 funding, the CDC can only elevate up to two states from planning
to program implementation.
An appropriation of $55.6 million would allow the CDC to add up to
4 new states to the State Heart Disease and Stroke Prevention Program,
allowing them to conduct a state-tailored prevention plan, and would
elevate 4 more states to from planning to program implementation. It
would enhance the Paul Coverdell National Acute Stroke Registry, which
tracks and improves delivery of acute stroke care that can mean the
difference between a fairly normal life and long-term disability. After
developing and conducting 8 registry prototypes (fiscal year 2001-
2003), the CDC funded 4 state health departments to implement
registries in fiscal year 2004.
We recommend the following fiscal year 2006 funding levels for the
following CDC programs:
--$132 million for the Preventive Health and Health Services Block
Grant;
--$70 million for the Obesity, Physical Activity and Nutrition
Program;
--$50 million for the Youth Media Campaign;
--$82.4 million for the School Health Education Program; and
--$145 million for the Office of Smoking and Health.
health resources and services administration.
About 95 percent of cardiac arrest victims die before reaching a
hospital. AEDs are small, easy-to-use devices that can shock a heart
back into normal rhythm and restore life. The Rural Access to Emergency
Devices Act and the Community Access to Emergency Defibrillation Act
authorize funds for state and local governments to start AED programs.
States, cities and towns nationwide eagerly await funds from these
vital public health service grant awards, with available funds far
below requests. An appropriation of $15 million is required to support
these authorized programs.
DEPARTMENT OF EDUCATION
Physical inactivity is a key risk factor for heart disease and
stroke. Yet, our youth have fewer chances for physical education.
Congress has been appropriating money for the Carol M. White Physical
Education Program (PEP) to provide funding for school-based physical
education initiatives that teach life-long physical activity habits and
thus prevent diseases, like heart disease and stroke. We advocate for
an appropriation of $100 million for PEP.
ACTION NEEDED
Despite progress, heart disease, stroke and other cardiovascular
diseases remain America's No. 1 killer. Cardiovascular diseases meet
the NIH's criteria for priority setting, but NIH continues to invest
only 7 percent of its budget on heart research and a mere 1 percent on
stroke research. Increasing funding for promising research
opportunities and for proven prevention and treatment programs will
allow continued strides against these diseases. Our government's
response to this challenge will help define the health and well being
of Americans for decades.
______
Prepared Statement of the Americans for Nursing Shortage Relief
Alliance
The ANSR Alliance (Americans for Nursing Shortage Relief)
appreciates the opportunity to submit written comments for the record
regarding funding for nursing workforce and research programs in fiscal
year 2006. ANSR is a coalition of 48 nursing organizations representing
a diverse cross section of healthcare and professional organizations,
healthcare providers, and friends of nursing that have united to
address the ever-growing nursing shortage.
To ensure that the nation has a sufficient and adequately prepared
nursing workforce to provide quality care to all well into the 21st
century, ANSR and the nation's 2.7 million registered and advanced
practice registered nurses (RNs and APRNs) advocate at least $210
million for the nursing workforce programs within Title VIII of the
Public Health Service Act at the Health Resources and Services
Administration (HRSA) as well as $160 million for the National
Institute of Nursing Research (NINR) at the National Institutes of
Health (NIH) in fiscal year 2006. ANSR stands ready to work with
policymakers at the federal level to advance policies and programs that
will sustain and strengthen the nation's nursing workforce.
NURSING SHORTAGE BACKGROUND
Nursing is the nation's largest healthcare provider group with an
estimated 2.7 million licensed nurses. Nurses play a critical role in
the health care system because they represent approximately 54 percent
of all health care workers and provide patient care in virtually all
locations in which health care is delivered. Our ability, as a nation
to meet these projected workforce needs is complicated by a number of
factors.
--The total nursing workforce is aging. By 2010, the average age of
RNs is forecasted to be 45.4 years, an increase of 3.5 years
over the current age, with more than 40 percent of the RN
workforce expected to be older than 50 years.
--Approximately half of the RN workforce is expected to reach
retirement age within the next 10 to 15 years. The average age
of new RN graduates is 31 years; RNs are entering the
profession older and will have fewer years to work than nurses
traditionally have had.
--For the first time, registered nurses top the U.S. Bureau of Labor
Statistics list of occupations with the largest projected 10-
year job growth. Nurses have been on the list for some time but
never as number one. The Bureau's latest projections put the
demand for registered nurses at 2.9 million in 2012, up from
2.3 million in 2002.
--The national nursing shortage also is affecting our nation's 7.6
million veterans who receive care through the 1,300 Veterans
Administration (VA) health care facilities.
--Nearly 1,800 faculty members leave their positions and fewer than
400 potential faculty candidates receive doctoral degrees each
year.
--For the 2003-2004 academic year, an estimated 125,000 qualified
applicants were turned away from nursing programs at all levels
due largely to a faculty shortage.
ADEQUATE NURSING WORKFORCE: HOMELAND SECURITY
Homeland security efforts try to prevent harm to our country, and
nurses play a critical role. These efforts involve the health system,
and nurses represent the largest group of health care providers who
will be called on to respond to an emergency, disaster, or mass-
casualty event. The estimates for the nurse workforce demand in 2010 do
not take into account the healthcare system's ability to meet the
healthcare needs of a surge of patients that could be expected from a
mass-casualty event, whether natural or man-made. Given the findings of
the bipartisan 9-11 Commission, it seems particularly relevant now to
ensure an adequate supply of all levels of nurses, who are often front-
line, first-responders in the case of tragedy. Unless steps are taken
now, the nation's ability to respond to a natural or intentional
disaster will be impeded by the growing nationwide nursing shortage. An
investment in the nurse workforce is a step in the right direction to
re-build the public health infrastructure and increase our nation's
healthcare readiness and emergency response capabilities.
GROWING UNMET NEED
Fortunately--after years of failing to have enough interested
individuals to pursue nursing--our nation is finally seeing a slight
upturn in nursing school applications. Many Americans, who have lost
their jobs due to the economy, and others interested in a second
career, find nursing attractive because of the job security, sufficient
pay, and the opportunity it affords to help others. However, nursing
organizations are hearing from prospective nursing students that they
face waiting periods of up to 3 years before they can matriculate
because there is not enough teaching faculty available. In many cases,
students who have been accepted into programs face long waits to
matriculate in nursing school due to these challenges. For example, in
2004, U.S. nursing schools turned away more than 32,000 qualified
applicants to entry-level baccalaureate and graduate nursing programs
due to insufficient faculty, clinical sites, classroom space, clinical
preceptors, and budget constraints, including almost 3,000 students who
could potentially fill faculty roles. When nursing programs of all
levels are considered, the number of qualified applicants turned away
during the 2003-2004 academic year grows to more than 125,000. Without
sufficient support for current nursing faculty and adequate incentives
to encourage more nurses to become faculty--our nation will fail to
have the teaching infrastructure necessary to educate and train the
next generation of nurses we need so desperately to care for our family
and friends, neighbors, colleagues, and ourselves.
Enacted in 2002, the Nurse Reinvestment Act included new and
expanded initiatives, including loan forgiveness, scholarships, career
ladder opportunities, and public service announcements to advance
nursing as a career. Despite the enactment of this critical measure,
HRSA fails to have the resources necessary to meet the current and
growing demands for our nation's nursing workforce. For example, in
fiscal year 2003, HRSA received 8,321 applications for the Nurse
Education Loan Repayment Program, but only had the funds to award 7
percent (602) of all applications. Also in fiscal year 2003, HRSA
received 4,512 applications for the Nursing Scholarship Program, but
only had funding to support a mere 2 percent (94) of all applications.
Therefore, the ANSR Alliance strongly urges Congress to provide
HRSA with a minimum of $210 million in fiscal year 2006 to ensure that
the agency has the resources necessary to fund a higher rate of Nurse
Education Loan Repayment and Nursing Scholarship applications as well
as implement other essential endeavors to sustain and boost our
nation's nursing workforce.
SUSTAIN AND SEIZE NURSING RESEARCH OPPORTUNITIES
The National Institute of Nursing Research (NINR) supports basic
and clinical research to establish a scientific basis for the care of
individuals across the life span--from management of patients during
illness and recovery to the reduction of risks for disease and
disability and the promotion of healthy lifestyles. These efforts are
crucial in translating scientific advances into cost-effective health
care that does not compromise quality of care for patients.
Additionally, NINR fosters collaborations with many other disciplines
in areas of mutual interest such as long-term care for older people,
the special needs of women across the life span, bioethical issues
associated with genetic testing and counseling, and the impact of
environmental influences on risk factors for chronic illnesses such as
cancer. The ANSR Alliance supports a fiscal year 2006 appropriation
level of $160 million for the NINR at the National Institutes of
Health.
CONCLUSION
The ANSR Alliance stands ready to work with policymakers to advance
policies and support programs that will sustain and strengthen our
nation's nursing workforce. We thank you for this opportunity to
discuss the funding levels necessary to ensure that our nation has a
sufficient nursing workforce to care for the patients of today and
tomorrow.
----------------------------------------------------------------------------------------------------------------
President's
Programmatic area Final fiscal year budget fiscal ANSR's request
2005 year 2006
----------------------------------------------------------------------------------------------------------------
Nurse Workforce Development Programs................... $151,889,000 $150,000,000 $210,000,000
National Institute of Nursing Research................. 138,000,000 139,000,000 160,000,000
----------------------------------------------------------------------------------------------------------------
ANSR Alliance Organizations that endorse this testimony: American
Association of Critical-Care Nurses; American Association of
Occupational Health Nurses, Inc.; American Academy of Nurse
Practitioners; American College of Nurse Practitioners; American
Nephrology Nurses Association; American Society of PeriAnesthesia
Nurses; Association of periOperative Registered Nurses; Association of
State and Territorial Directors of Nursing; Association of Women's
Health, Obstetric and Neonatal Nurses; Emergency Nurses Association;
Infusion Nurses Society; National Association Nurse Massage Therapists;
National Association of Orthopaedic Nurses; National Association of
Pediatric Nurse Practitioners; National Association of School Nurses;
National Council of State Boards of Nursing; National League for
Nursing; National Nursing Centers Consortium; National Student Nurses'
Association; Nurses Organization of Veterans Affairs; Oncology Nurses
Society; Society of Trauma Nurses; and Society of Urologic Nurses and
Associates.
______
Prepared Statement of the American Nurses Association
The American Nurses Association (ANA) appreciates this opportunity
to comment on fiscal year 2006 appropriations for nursing education,
workforce development, and research programs. Founded in 1886, ANA is
the only full-service national association representing registered
nurses. Through our 54 constituent member associations, we represent
registered nurses (RNs) across the nation in all practice settings.
The ANA gratefully acknowledges this Subcommittee's history of
support for nursing education and research. We appreciate your
continued recognition of the important role nurses play in the delivery
of quality health care services. This testimony will give you an update
on the status of the nursing shortage, its impact on the nation, and
the outlook for the future.
THE NURSING SHORTAGE TODAY
The nursing shortage is far from solved. Here are a few quick
facts:
--On February 11, 2004, the Bureau of Labor Statistics reported that
registered nursing will have the greatest job growth of all
U.S. professions in the time period spanning 2002-2012. During
this 10-year period, health care facilities will need to fill
more than 1.1 million RN job openings.
--The Division of Nursing at the Health Resources and Services
Administration projects that, absent aggressive intervention,
the supply of nurses in America will fall 29 percent below
requirements by the year 2020.
--The American College of Healthcare Executives reported in October,
2004 that 72 percent of hospitals were experiencing a nursing
shortage at their facility.
--According to the National Council of State Boards of Nursing, the
number of first-time, U.S. educated nursing school graduates
who sat for the NCLEX-RN (the national licensure examination
for registered nurses) decreased by 20 percent from 1995-2003.
A total of 19,820 fewer students in this category of test
takers sat for the exam in 2003 as compared with 1995.
This growing nursing shortage is having a detrimental impact on the
entire health care system. Numerous recent studies have shown that
nursing shortages contribute to medical errors, poor patient outcomes,
and increased mortality rates. A study based on a review of more than 6
million patients was published in the New England Journal of Medicine
in May, 2002. The researchers found that hospitalized patients had
better outcomes when the number of hours of RN care per day increased.
Specifically, nursing shortages were found to correlate with longer
lengths of stay, increased incidence of urinary tract infections and
upper gastrointestinal bleeding, higher rates of pneumonia, shock and
cardiac arrest. Increased hours of RN care resulted in fewer ``failure-
to-rescue'' deaths from pneumonia, shock or cardiac arrest, upper
gastrointestinal bleeding, sepsis and deep venous thrombosis.
Research published in the October 23, 2002 Journal of the American
Medical Association demonstrated that more nurses at the bedside could
save thousands of patient lives each year. In reviewing more than
232,000 surgical patients at 168 hospitals, researchers from the
University of Pennsylvania concluded that a patient's overall risk of
death rose roughly 7 percent for each additional patient above four
added to a nurse's workload.
A Joint Commission on the Accreditation of Healthcare Organizations
(JCAHO) study published in 2002 shows that nearly one-quarter of all
unanticipated deaths or injuries result from a lack of adequate nursing
care.
THE IMPACT ON PREPAREDNESS AND MILITARY HEALTH CARE
This growing nursing shortage has effects well beyond domestic
health care. RNs are integral in everything from adequate terrorism
preparedness, to veterans' health delivery, to disaster response. In
the event of a terrorist attack, nurses will be needed to evaluate
patients, administer vaccines and medications, perform disease
surveillance, and to train non-licensed staff. The Agency for
Healthcare Research and Quality has developed a model to determine the
number of health staff needed for these activities. According to this
model, a small-scale anthrax attack in New York City would require
18,981 trained staff working around the clock for four days to provide
needed testing and antibiotics. A contained, small-scale smallpox
attack in Columbus, OH would require 2,296 patient-care staff working
around the clock for 4 days. The GAO reports that five out of 7 states
have claimed that nursing shortages are hindering their bioterrorism
preparedness efforts.
The nursing shortage is also stressing military health care
delivery. Because the military holds the vast majority of its health
care assets in the reserves, the reserve activation has been
particularly hard on nursing. There are currently more than 19,000 RNs
providing care through the military reserves. As these nurses are drawn
out of the domestic labor pool, the shortage is exacerbated.
The Army, Navy, and Air Force are offering lucrative RN recruitment
packages that include large sign-on bonuses, generous scholarships, and
loan forgiveness packages. Yet, for the last 2 years the Army has not
met its RN recruiting goals for either the active service or the
reserves. The Air Force has not met its recruiting goals for the last 5
years. Therefore, this shortage impacts our very strength as a nation.
NURSING WORKFORCE DEVELOPMENT PROGRAMS
Federal support for the Nursing Workforce Development Programs
contained in Title VIII of the Public Health Service Act is
unduplicated and essential. In 2002, the 107th Congress recognized the
detrimental impact of the developing nursing shortage and passed the
Nurse Reinvestment Act (Public Law 107-205). This law improved the
programs of Title VIII to meet the unique characteristics of today's
shortage. This significant achievement holds the promise of recruiting
new nurses into the profession, promoting career advancement within
nursing and improving patient care delivery. This promise will not be
met, however, without a significant investment.
In fiscal year 2004 this Subcommittee allocated $142 million in
funding for Title VIII, this supported 28,253 individual student
nurses. In fiscal year 2005, the hard work of this Subcommittee
resulted in $151 million in funding for Title VIII programs. ANA
strongly urges you to increase funding for Title VIII programs by at
least $24 million to a total of $175 million in fiscal year 2006. The
nursing shortage and its impact on the health care of the nation demand
this continued investment.
In 1974, this Subcommittee invested $153.6 million Title VIII.
Inflated to today's dollars, this long-ago appropriation would equal
$592 million, approximately four times the current appropriation.
Certainly, today's shortage is more dire and systemic than that of the
1970's; it deserves an equivalent response.
Title VIII includes the following program areas:
Nursing Education Loan Repayment Program & Scholarships.--This line
item is comprised of the Nurse Education Loan Repayment Program (NELRP)
and the Nursing Scholarship Program (NSP), the Secretary of HHS has the
authority to allocate funds between the two areas. The NELRP repays
nursing student loans in return for at least two years of practice in a
facility with a critical nursing shortage. For the first two years of
service, the NELRP will repay 60 percent of the RN's student loan
balance. If the nurse elects to stay for another year, an additional 25
percent of the loan will be repaid. Within 3 years, a nurse can pay off
85 percent of his/her student loans.
The NELRP boasts a proven track record of delivering nurses to
facilities hardest hit by the nursing shortage. HRSA has given NELRP
funding preference to RNs who work in skilled nursing facilities,
disproportionate share hospitals, and departments of public health.
However, lack of funding has hindered the full implementation of this
program. In fiscal year 2004, HRSA received more than 4,800
applications for the NELRP. Due to lack of funding, only 857 loan
repayments were awarded. Therefore, 82 percent of the nurses willing to
immediately begin practicing in facilities hardest hit by the shortage
were turned away from this program.
The nursing scholarship program offers funds to nursing students
who, upon graduation, agree to work for at least two years in a health
care facility with a critical shortage of nurses. Preference is given
to students with the greatest financial need. Like the loan repayment
program, the nursing scholarship program as been stunted by a lack of
funding. In fiscal year 2004, HRSA received more than 8,800
applications for the nursing scholarship. Due to lack of funding, a
mere 126 scholarships were awarded. Therefore, 98 percent of the
nursing students willing to work in facilities with a critical shortage
of nurses were denied access to this program.
Nurse Faculty Loan Program.--This program establishes a loan
repayment fund within schools of nursing to increase the number of
qualified nurse faculty. Nurses may pursue a master's or doctoral
degree. They must agree to teach at a school of nursing in exchange for
cancellation of up to 85 percent of their educational loans, plus
interest, over a 4-year period. Loans can cover the costs of tuition,
fees, books, laboratory expenses, and other reasonable education
expenses.
This program is vital given the critical shortage of nursing
faculty. America's schools of nursing can not increase their capacity
without an influx of new teaching staff. Last year, schools of nursing
were forced to turn away tens of thousands of qualified applicants due
largely to the lack of faculty. In fiscal year 2004, HRSA awarded 61
nurse faculty loan repayments.
Nurse Education, Practice, and Retention Grants.--This section
contains grant areas designed to expand enrollments in baccalaureate
nursing programs; develop internship and residency programs to enhance
mentoring and specialty training, and; provide new technologies in
education including distance learning. Practice grant are designed to
expand practice arrangements in non-institutional settings to improve
primary health care in medically underserved communities; provide care
for underserved populations; provide skills necessary to practice in
existing and emerging health systems, and; develop cultural
competencies. Retention grant areas include career ladders and improved
patient care delivery systems. The career ladders program supports
education programs that assist individuals in obtaining the educational
foundation required to enter the profession, and to promote career
advancement within nursing.
Enhancing patient care delivery system grants are designed to
improve the nursing work environment. It provides grants to facilities
to enhance collaboration and communication among nurses and other
health care professionals, and to promote nurse involvement in the
organizational and clinical decision-making processes of a health care
facility. These best practices for nurse administration have been
identified by the American Nurse Credentialing Center's Magnet
Recognition Program. These practices have been shown to double nurse
retention rates, increase nurse satisfaction, and improve patient care.
Nursing Workforce Diversity.--This program provides funds to
enhance diversity in nursing education and practice. It supports
projects to increase nursing education opportunities for individuals
from disadvantaged backgrounds--including racial and ethnic minorities,
as well as individuals who are economically disadvantaged. Racial and
ethnic minorities currently comprise more than 25 percent of the
nation's population and will comprise nearly 40 percent by the year
2020. Only 12 percent of the RNs in the United States come from diverse
backgrounds. Increasing the number of RNs from diverse races helps to
address the prevention, treatment, and rehabilitation needs of an
increasingly diverse population. For fiscal year 2004, HRSA received
144 submissions for nursing workforce diversity grants. HRSA was only
able to fund 20 (14 percent of applications).
Advanced Nurse Education.--Advanced practice registered nurses
(APRNs) are RNs who have attained advanced expertise in the clinical
management of health conditions. Typically, an APRN holds a master's
degree with advanced didactic and clinical preparation beyond that of
the RN. Most have practice experience as RNs prior to entering graduate
school. Practice areas include, but are not limited to: anesthesiology,
family medicine, gerontology, pediatrics, mental health, midwifery,
neonatology, and women's & adult health. Title VIII grants have
supported the development of virtually all initial state and regional
outreach models using distance learning methodologies to provide
advanced study opportunities for nurses in rural and remote areas.
These grants also provide traineeships for masters and doctoral
students. Title VIII funds more than 60 percent of U.S. nurse
practitioner education programs and assists 83 percent of nurse
midwifery programs. Over 45 percent of advanced nursing graduates go on
to practice in medically underserved communities, and in areas with
large Medicaid populations. Many provide care to minority or
disadvantaged patients. In fiscal year 2004, HRSA funded 82 advanced
education nursing grants (78 percent of applications), 335 advanced
education nursing traineeships (every application), and 73 nurse
anesthetist traineeships (every application).
Comprehensive Geriatric Education Grants.--This authority awards
grants to train and educate nurses in providing health care to the
elderly. Funds are used to train individuals who provide direct care
for the elderly, to develop and disseminate geriatric nursing
curriculum, to train faculty members in geriatrics, and to provide
continuing education to nurses who provide geriatric care. The growing
number of elderly Americans and the impending health care needs of the
baby boom generation make this program critically important. In fiscal
year 2004, HRSA continued 17 previously awarded grants.
NATIONAL INSTITUTE OF NURSING RESEARCH (NINR)
ANA also urges the Subcommittee to increase funding for the NINR,
one of the institutes at the National Institutes of Health (NIH).
Nursing research is an integral part of the effectiveness of nursing
care. Advances in nursing care arising from nursing and other
biomedical research improves the quality of patient care and has shown
excellent progress in reducing health care costs. Research programs
supported by NINR address a number of critical public health and
patient care questions. The research is driven by real and immediate
problems encountered by patients and families.
Recent studies have revealed the difference in heart attack
symptoms in women versus men, the most effective means to prevent
infectious diseases in inner city households, the incidence and risk
factors for uterine rupture in pregnancies following cesarean section,
and the means to help family caregivers provide high-quality long, term
care for loved ones with chronic health care needs. NINR is leading the
NIH research on end-of-life and palliative care. NINR is the lowest
funded institute at NIH. ANA recommends $160 million in fiscal year
2006 funding for the NINR.
CONCLUSION
While we appreciate the continued support of this Subcommittee, ANA
is concerned by the fact that Title VIII funding levels have not been
sufficient to assist qualified students enter the nursing profession.
The nursing shortage will continue to worsen if significant investments
are not made in nursing workforce development programs. Recent efforts
have shown that aggressive and innovative recruitment efforts can help
avert the impending nursing shortage--if they are adequately funded.
ANA asks you to meet today's shortage with a relatively modest
investment of $175 million in Title VIII programs. Additionally, an
investment of $160 million in the NINR will help assure that these
nurses are equipped with the information needed to provide the best
care possible.
______
Prepared Statement of the American Public Health Association (APHA)
The American Public Health Association (APHA), the oldest
organization of public health professionals, represents more than
50,000 members from over 50 public health occupations. We are pleased
to submit our views on federal funding for public health activities in
fiscal year 2006.
RECOMMENDATIONS FOR FUNDING THE PUBLIC HEALTH SERVICE
APHA's budget recommendation concurs with the estimate developed by
the Coalition for Health Funding: we believe the Public Health Service
needs an increase of $3.5 billion in fiscal year 2006. This figure is
based on the professional estimate of need and opportunity within each
agency of the Public Health Service and would accommodate needed
increases for the Centers for Disease Control and Prevention (CDC), the
Health Resources and Services Administration (HRSA), the Substance
Abuse and Mental Health Services Administration (SAMHSA), the Agency
for Healthcare Research and Quality (AHRQ), and the National Institutes
of Health (NIH), as well as agencies outside this subcommittee's
jurisdiction--the Food and Drug Administration (FDA) and the Indian
Health Service (IHS).
CENTERS FOR DISEASE CONTROL AND PREVENTION
APHA supports a funding level for the Centers for Disease Control
and Prevention that enables it to carry out its mission to protect and
promote good health and to assure that research findings are translated
into effective state and local programs. It is time to support CDC as
an agency--not just the individual programs that it funds. In the best
professional judgment of the American Public Health Association, in
conjunction with the CDC Coalition--given the challenges of terrorism
and disaster preparedness, new and re-emerging infectious diseases, the
epidemic of obesity, particularly among children, and our many unmet
public health needs and missed prevention opportunities--the agency
will require funding of at least $8.65 billion to support its mission
for fiscal year 2006.
APHA is pleased with the support the Subcommittee has given to CDC
programs over the years, including your recognition of the need to fund
Severe Acute Respiratory Syndrome (SARS) response efforts, obesity
prevention, chronic disease prevention, and solutions to the shortage
of the flu vaccine. By translating research findings into effective
intervention efforts in the field, the agency has been a key 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. From anthrax to West Nile to smallpox to avian flu, the
Centers for Disease Control and Prevention is 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.
In fiscal year 2002, Congress appropriated $7.7 billion for CDC. In
fiscal years 2003, 2004 and 2005, Congress appropriated $7.1 billion,
$7.2 billion, and $8.0 billion, respectively. Now the President's
proposed budget for the agency in fiscal year 2006 is $7.5 billion--a
$500 million cut from last year's funding, and $200 million below the
fiscal year 2002 funding level. We are moving in the wrong direction.
Public health is being asked to do more, not less. As far as we can
tell, in light of the current workload placed on the public health
service--in addition to the threat of emerging diseases such as the
avian flu--it simply does not make any sense to cut the budget for CDC
at a time when the threats to public health are so great. Funding
public health outbreak by outbreak is not an effective way to ensure
either preparedness or accountability.
Furthermore, the President's budget proposes the elimination of two
very important chronic disease prevention programs: the Preventive
Health and Health Services Block Grant and the Childhood Obesity
Prevention Program (COPP), also referred to as the VERB or CDC Youth
Media campaign. As states use their Prevention Block Grant dollars to
address high priority needs such as emerging and chronic diseases,
child safety seat programs, suicide prevention, smoke detector
distribution and fire safety programs, adult immunization, oral health,
worksite wellness, infectious disease outbreaks, food safety, emergency
medical services, safe drinking water, and surveillance needs--we can
scarcely understand why the Prevention Block Grant should be
eliminated. And the success of the COPP program shows that over 30
percent of the target audience, children ages 9 to 10 years, increased
their physical activity as a direct result of the VERB media campaign.
This type of success warrants continued funding of a program to empower
our children to respond to the growing concerns of the obesity epidemic
and improve the health of this nation. We encourage the Subcommittee to
restore the cuts and fund the Prevention Block Grant at $132 million
and the COPP program at $70 million.
Until we are committed to a strong public health system, every
crisis will force trade offs. For instance, the Administration's recent
reprogramming request to make up for the vaccine shortage with money
originally appropriated by Congress for chronic disease prevention
programs (COPP and the Preventive Health and Health Services Block
Grant) and bioterror preparedness funds is the most recent concrete
example of attention to one disease coming at the expense of another.
We also encourage the Subcommittee to provide $10 million for CDC's
Environmental Public Health Services Branch to revitalize environmental
public health services at the national, state and local level. As with
the public health workforce, the environmental health workforce is
declining. Furthermore, the agencies that carry out these services are
fragmented and their resources are stretched. These services are the
backbone of public health and are essential to protecting and ensuring
the health and well being of the American public from threats
associated with West Nile virus, terrorism, E. coli and lead in
drinking water.
HEALTH RESOURCES AND SERVICES ADMINISTRATION
HRSA programs assure that all Americans have access to our nation's
best available health care services. HRSA provides a health safety net
for medically underserved individuals and families, including 45
million Americans who lack health insurance; African American infants,
whose infant mortality rate is more than double that of whites; and the
estimated 850,000 to 950,000 people living with HIV/AIDS. Programs to
support the underserved place HRSA on the front lines in erasing our
nation's racial/ethnic and rural/urban disparities in health status.
HRSA funding goes where the need exists, in communities all over
America. The agency's overriding goal is to achieve 100 percent access
to healthcare, with zero disparities. In the best professional judgment
of APHA, in conjunction with the Friends of HRSA Coalition, to respond
to this challenge, the agency will require a funding level of at least
$7.5 billion for fiscal year 2005.
We are grateful to the Subcommittee for your consistent strong
support for all of HRSA's programs, including the initiatives in
terrorism preparedness and response in the past. Unfortunately, the
president's budget overall recommends a massive $838 million or over 12
percent cut to the agency for fiscal year 2006. We urge the members of
the Subcommittee to restore the cuts and fund the agency at a level
that allows HRSA to effectively implement these important programs.
APHA is pleased that the Administration has requested a significant
17.5 percent increase for Community Health Centers. More than 4,000 of
these sites across the nation provide needed primary and preventive
care to nearly 15 million poor and near-poor Americans. Health centers
provide access to high-quality, family-oriented, culturally and
linguistically competent primary care and preventive services,
including mental and behavioral health, dental and support services.
Nearly three-fourths of health center patients are uninsured or on
Medicaid, approximately two-thirds are people of color, and more than
85 percent live below 200 percent of the poverty level.
However, we are once again very concerned that the HRSA health
professions programs under Title VII and VIII have once again landed on
the chopping block. Today our nation faces a widening gap between
challenges to improve the health of Americans and the capacity of the
public health workforce to meet those challenges. An adequate, diverse,
well-distributed and culturally competent health workforce is
indispensable to our national readiness efforts and to address critical
health care needs. These programs help meet the health care delivery
needs of the areas in this country with severe health professions
shortages, at times serving as the only source of health care in many
rural and disadvantaged communities. Therefore, the elimination of most
funding for the Title VII health professions training programs and flat
funding for Title VIII nurse training will only make certain that the
needs of these medically underserved populations will not be met.
Furthermore, we believe the elimination of the Healthy Community
Access Program, universal newborn hearing screening programs, and the
Emergency Medical Services for Children Program, especially when
coupled with the flat-funding of the Maternal and Child Health Block
Grant, will further undermine the availability of health services for
some that are most in need--especially children. The Healthy Community
Access Program is an example in which communities build partnerships
among health care providers to deliver a broader range of health
services to their neediest residents. This program of coordinated
service delivery is innovative, not duplicative of other available
programs, and therefore its elimination it of grave concern. Also, the
proposed zero funding of universal newborn hearing screening programs
in the Administration's budget will likely cause many hearing
impairments in infants to go undetected, which can negatively impact
speech and language acquisition, academic achievement, and social and
emotional development. The proposed elimination of the Emergency
Medical Services for Children Program will hurt many children who are
eligible for Medicaid and SCHIP, but not enrolled due to state
enrollment limits and budgetary pressures, and therefore frequently use
emergency health services.
We are very concerned that most programs under the Ryan White CARE
Act, administered by HRSA's HIV/AIDS Bureau, would be flat-funded
should the figures requested by the Administration be implemented. The
CARE Act program is an important safety net program, providing an
estimated 533,000 people access to services and treatments each year.
At a time when HIV/AIDS is the fifth leading cause of death for people
who are 25 to 44 years old in the United States, and the number of new
domestic HIV/AIDS cases is increasing, not decreasing, flat funding
these critical Ryan White Act programs does not make much sense.
Through its many programs and new initiatives, HRSA helps countless
individuals live healthier, more productive lives. In the 21st century,
rapid advances in research and technology promise unparalleled change
in the nation's health care delivery system. HRSA is well positioned to
meet these new challenges as it continues to provide first-rate health
care to the nation's most vulnerable citizens. We recommend growth in
HRSA's budget to meet the needs of vulnerable populations served by the
agency.
AGENCY FOR HEALTHCARE RESEARCH AND QUALITY
We request a funding level of $443 million for the Agency for
Healthcare Research and Quality for fiscal year 2006, an increase of
$124 million over last year. This level of funding is needed for the
agency to fully carry out its Congressional mandate to improve health
care quality, including eliminating racial and ethnic disparities in
health, reducing medical errors, and improving access and quality of
care for children and persons with disabilities. The cuts proposed in
the administration budget will severely hamper these efforts.
SUBSTANCE ABUSE AND MENTAL HEALTH SERVICES ADMINISTRATION
APHA supports a funding level of $3.5 billion for the Substance
Abuse and Mental Health Services Administration for fiscal year 2006,
an increase of $262 million over last year. This funding level would
provide support for substance abuse prevention and treatment programs,
as well as continued efforts to address emerging substance abuse
problems in adolescents, the nexus of substance abuse and mental
health, and other serious threats to the mental health of Americans.
DEPARTMENT OF HEALTH AND HUMAN SERVICES
The budget of the Office of Minority Health has been decreased in
the last several years. In fiscal year 2004, OMH received $55 million;
in fiscal year 2005, OMH received $50 million; and the proposed budget
in fiscal year 2006 is $47 million. APHA is concerned that at a time
when we have increasing evidence of disparities in health care
delivery, access and health outcomes, the budget of OMH is getting cut.
We support restoring OMH funding to the fiscal year 2004 level.
CONCLUSION
In closing, we emphasize that the public health system requires
financial investments at every stage. Successes in biomedical research
must be translated into tangible prevention opportunities, screening
programs, lifestyle and behavior changes, and other interventions that
are effective and available for everyone. While we have said this
before, in the post-September 11th era, we need to apply this to our
spending growth in terrorism preparedness as well. We must think in a
broad and balanced way, leveraging homeland security programs and
funding whenever possible to provide public health benefits as a matter
of routine, rather than emergency.
We thank the subcommittee for the opportunity to present our views
on the fiscal year 2006 appropriations for public health service
programs.
______
Prepared Statement of the Association of Maternal and Child Health
Programs
Mr. Chairman and members of the subcommittee, I am pleased to
submit testimony on behalf of the Association of Maternal and Child
Health Programs (AMCHP) regarding the critical need for funding of the
Title V Maternal and Child Health Services Block Grant in fiscal year
2006. As AMCHP's President and the director of Iowa's Child Health
Specialty Clinics program, which uses MCH block grant funds to serve
Iowa's children and their families, I know these funds make a
difference. Because of the MCH Block Grant, states are able to fund a
variety of activities to improve the health of your constituents. I
urge you to provide $755 million for the MCH Block Grant this year.
AMCHP is a national non-profit organization representing the
leaders of state public health programs for maternal and child health,
and children with special health care needs in all 50 states, the
District of Columbia, and eight additional jurisdictions. Every state
health department receives Title V Maternal and Child Health Services
Block Grant funds to improve the health of all mothers and children.
This modest increase to $755 million (3 percent) is necessary to
help states maintain current levels of service. Between 1999 and 2003,
the number of women and children served by this program increased by
almost 4 million (16 percent). Federal funding has declined since 2003.
The President's request of $723.9 million for fiscal year 2006 would be
the fourth straight year of level or reduced funding. States are being
called to do more with less and state MCH programs have done their best
to make sure that the women and children we served are not adversely
affected. However, maternal and child health programs in every state
have reached a breaking point, with many states experiencing reductions
in both state and federal funding; without additional funds, more
severe cuts may have to be made.
I also urge you to reject the Administration's proposal to
eliminate funding for HRSA's Emergency Medical Services for Children
program, Universal Newborn Hearing Screening program, trauma program
and CDC's preventive health and health services block grant. The budget
request argues that states will be able to use their MCH Block Grant
funds to support some of these activities. States already work with
these programs to avoid duplication and to ensure that each federal
dollar, whether obtained through the block grant or not, goes further.
The reality is that states have less federal and state funds available
for maternal and child health programs and would not be able to support
the current activities without cutting funds for other health
priorities. Eliminating Newborn Hearing Screening grants will force
states to cut other worthy MCH programs in order to continue hearing
screening or to scale back or not conduct newborn hearing screening
activities. According to a recent report, thanks to the HRSA funding,
over 86 percent of infants born in hospitals nationwide are screened
for hearing loss, up from 25 percent in 1999. Additionally, continued
funding ($5 million) within the Special Projects of Regional and
National Significance (SPRANS) set-aside for MCH oral health activities
is critical. Most state dental programs for children are part of the
state's maternal and child health program and are supported through the
Maternal and Child Health block grant and support ongoing leadership to
states to address long-term oral health problems.
The Title V Maternal and Child Health Block Grant is one of the
nation's oldest health programs and plays a pivotal part in states'
current maternal and child health policy. The authorization of funding
for the Maternal and Child Health Block Grant goes back to the Social
Security Act of 1935. The legislation represented one of the very first
state ``grant-in-aid'' programs, allocating federal revenues to states
that agreed to meet the program's basic conditions of participation,
which revolved around two main goals. The first was to help states
lessen the negative social and public health impact of the Great
Depression through promotion of maternal and child health services and
the development of a basic preventive and primary health care
infrastructure for women and children. The second, and one directly
tied to the terrible epidemic of polio, was to assist states through
grants to develop services for ``crippled children.''
Today, Maternal and child health programs have expanded their roles
and lead state efforts to increase immunization and newborn screening
rates, reduce infant mortality, prevent childhood accidents and
injuries, and reduce adolescent pregnancy. Each year, more than 27
million women, infants, children and adolescents, including those with
special health care needs, are served by MCH Block Grant funds. Half of
the 4 million women who give birth annually receive health services
made possible by the MCH Block Grant.
While the block grant now represents a much smaller funding stream
for states, it still remains one of the few resources that gives
states' the ability to provide numerous services to meet needs
identified by the states, to millions of women, children, and their
families annually. And in every state, the MCH Block Grant still
provides a health safety net for low-income women and children, by
being a payor of last resort for needed medical services when other
sources of payment (either public or private) are not available.
WHO DO WE SERVE? WHAT DOES THE TYPICAL TITLE V CLIENT LOOK LIKE?
Every year, over 4 million babies are born in this country. Many of
them are healthy and families leave the hospital confident of a better
future. I can discuss the many ways that MCH Block Grant dollars and
state programs help in producing those healthy outcomes. However, I
want to focus on the case of those families with children who may have
special health care needs present at birth or shortly afterwards. Like
the parent from Massachusetts with a son who was eventually diagnosed
with congenital heart disease, abnormal heart rhythms, and is now
pacemaker dependent. Immediately after birth, the parent made countless
visits to the pediatrician sensing that something seemed wrong with her
son, but she didn't know what. He was jaundiced for weeks after he was
born and didn't gain weight, as he should. Even on formula, her son
still did not gain weight. In a span of two calendar years, her son was
hospitalized for 134 consecutive days. For all the ``I feel for you''
visits she had from hospital social workers, no one ever told her son
was eligible for SSI after the first 30 consecutive calendar days as an
inpatient, or that her family could apply for Massachusetts Medicaid
buy-in option to offset their exorbitant out-of-pocket costs for the
healthcare services her son was receiving. This parent, like many
others, continued to have great difficulty in coordinating health care
services. She had to make thousands of phone calls to state agencies
and search the Internet, plead with her insurance company to pay for
things, call state agencies, surf the Internet late into the night
looking for support services, for other parents, or for anything that
would help.
Another family in Pennsylvania juggle 11 doctors who treat their
son with special health care needs and who constantly struggle to
navigate the health care system for as many options that are available
to improve the quality of life for their son. These are just a few
examples of what is unfortunately a very common occurrence throughout
the country.
MCH Block Grant funds help assure that every state has the ability
to connect families like the one described above to services and when
those services are not otherwise available, to pay for that care. In
Missouri, a child was born with an infection similar to a form of
meningitis and was in the NICU for the first 8 weeks of his life.
Within a day after mother and child went home, a nurse from the Bureau
of Special Health Care Needs contacted the family. The support from the
state's children with special health care needs program did not stop
but continued and even now 16 years later, is available when the family
needs it. Anything from adaptive equipment, to personal care attendant
services have been provided when necessary.
State Maternal and Child Health Programs play a primary role in
assuring health care for children with special health care needs and
their families. The services that each state provides may vary but by
law, 30 percent of each state's Maternal and Child Health Block Grant
allocation must be used to provide services for these kids. Why?
Because the experiences for families that I outlined above have
occurred too often. Since 1935, Congress has provided funding to states
to make sure that we put an end to stories like these. A recent
national survey by the Maternal and Child Health Programs estimated 13
percent of children in the United States have a special health care
need. Maternal and Child Health Block Grant funded programs are
reaching slightly over 1 million but more can be done with increased
funding for this important program.
In Iowa, Child Health Specialty Clinics is the designated Title V
Children with Special Health Care Needs program. We operate a statewide
program that works with families, service providers and communities to
provide subspecialty health care and support to children, from birth
through age 21, who have a chronic condition (physical, developmental,
behavioral or emotional) or who have an increased risk of a chronic
condition and need special services. Like similar programs in all
states, the program is primarily funded through the Maternal and Child
Health Block Grant. Each specialty clinic center can offer from one to
four evaluation and planning clinics per month. These clinics are
staffed by community pediatricians, nurses, and nutritionists and serve
mostly children with behavioral and developmental problems. Clinics
serve children with chronic health problems like heart disease,
diabetes, sickle cell disease, and bone and joint disease. Fees for the
clinics are based on a sliding scale that accounts for family size and
income.
Besides the clinics, Iowa uses MCH block grant funds to provide
other services for children and their families including making sure
family support is available and organizing care plans for children.
Through a statewide parent-to-parent network, we provide one-on-one
emotional support, problem-solving assistance and help with
understanding health insurance to families. The network connects
parents new to the program with parents who have already been through
many of the same experiences When one child can have as many as 11
doctors, the burden on families to navigate the health care maze can be
crushing. Another way we help is helping families navigate the health
care system. Some children with complicated health problems require
different services from varied agencies and we help coordinate needed
care with local agencies within the family's community. These are
provided as free services to families.
Child Health Specialty Clinics serve approximately 9,000 children
yearly, including 800 infants and 1,500 preschoolers, including making
phone, mail and face-to-face contacts with families and health care
providers. A few years ago I had 14 of these centers throughout Iowa.
Today, we have 13 centers and in most other locations are now open only
four days a week. Funding reductions at the state and federal level
mean less clinics, families have to travel farther, and no ability to
address emerging needs such as care for children with special emotional
and behavioral health needs, one of the largest needs that we are
currently seeing in the state.
STATE BUDGET CUTS
More MCH Block Grant funds are needed. Below are specific examples
of reductions in services that states have made due to declining
federal and state funding for maternal and child health.
IOWA
Because of decreased state and federal funding along with increases
in personnel costs (inflation), Iowa closed pediatric mobile clinics,
eliminated nutrition services for children, closed the Waterloo center
and reduced services at other centers. Without increased funding, we
are looking at:
--Closing centers in Burlington, Council Bluffs, Sioux City
--Consolidating the Dubuque and Davenport with other centers
--Increased waiting time up to 12 months for families and their kids
to get the services they need
--Ending behavioral pilot programs, a medical home project and other
activities to make sure these children and their families get
the right services when they need them.
OHIO
Ohio received one of the steepest cuts in federal MCH block grant
funding, losing $1.5 million (or 6 percent) between fiscal year 2003
and fiscal year 2004. Combined with a $7.5 million decline in the state
funds available to support MCH, the ability for the program to maintain
services to the 266,000 women, infants, and children who received
services in 2002 has been severely compromised. Ohio's Children with
Special Health Care Needs (CSHCN) program, because of both state cuts
and cuts in the Ohio MCH Block Grant, has had to decrease the number of
diagnoses covered by the CSHCN Treatment Program and to change the
eligibility rules to reduce the services provided. Three diagnosed
conditions were eliminated from coverage, affecting almost 600
children.
Other changes may affect up to 5,000 children who rely on the
program. Co-payments are increased for families. Raising co-payments
can significantly impact the financial and physical health of these
families and their children if they are unable to pay them. These
families turn to Title V when insurance (either private or public)
cannot provide the services. The Ohio Specialty Field Clinic Program
received a 20 percent decrease in MCH block grant and other funding
support. The Specialty Clinic Program provides access to pediatric
specialists for children in Ohio. The number of clinics will be cut,
all in rural Ohio where the greatest need for services exists. This
will affect the access to care for 300 children in Ohio's rural areas.
Cardiac Specialty Clinics will be closed as of July 1, 2004. Funding
reductions also slow the ability to respond to emerging issues, such as
an increase in Ohio's infant mortality rate, which rose from 7.5 per
1,000 births in 2000 to 7.9 in 2002.
TEXAS
Texas received a reduction of $753,000 (3 percent) in federal MCH
funds. That reduction along with a reduction in state funds for MCH in
2004-2005 will drastically increase the unmet needs of the MCH
population in Texas. Currently, the MCH program addresses less than 10
percent of the MCH population-in-need. For example, Title V MCH fiscal
year 2004 contracts for services (i.e., initiatives directed toward
teen pregnancy, childhood obesity, immunization, etc) decreased by 33
percent and by 13 percent for direct services (prenatal care, child
well-check visits, dental, family planning, etc.). In 2001, the Texas
Children with Special Health Care Needs program instituted a waiting
list that has grown to 1,200 families and is expected to continue to
increase.
CONCLUSION
Since its creation, the Title V Maternal and Child Health Block
Grant has grown from a $2.7 million program in fiscal year 1936 to a
$723.9 million program in fiscal year 2005, and despite its relatively
modest size, it has been revisited by Congress repeatedly over the
years as new maternal and child health related concerns become evident.
Even with the enactment of Medicaid in 1965, the Early and Periodic
Screening, Diagnostic, and Treatment (EPSDT) program in 1967 (which
simultaneously amended Medicaid and Title V to increase support for
primary care) and SCHIP in 1997, Title V continues as a source of
flexible funding that allows states to invest in the child health
``infrastructure'' for both basic and specialty care. Increased funding
is crucial to helping state MCH programs navigate the changing maternal
and child health world. Please provide $755 million for the Maternal
and Child Health Block Grant in fiscal year 2006. Again, thank you for
this opportunity to testify.
______
Prepared Statement of the Association of Women's Health, Obstetric and
Neonatal Nurses
The Association of Women's Health, Obstetric and Neonatal Nurses
(AWHONN) appreciates the opportunity to comment on the fiscal year 2006
appropriations for nursing education, research, and workforce programs
as well as programs designed to improve maternal and child health.
AWHONN is a membership organization of 22,000 nurses whose mission is
to promote the health of women and newborns. AWHONN members are
registered nurses, nurse practitioners, certified nurse-midwives, and
clinical nurse specialists who work in hospitals, physicians' offices,
universities, and community clinics across North America as well as in
the Armed Forces around the world.
AWHONN appreciates the support that this Subcommittee has provided
for nursing education, research and workforce programs as well as
maternal and child health programs in the past. We realize that there
are many competing priorities for the Subcommittee members, and we
appreciate your consistent support.
GROWING NURSING SHORTAGE
AWHONN supports the advancement of quality care through an adequate
nurse workforce Data from the Bureau of Health Professions, Division of
Nursing's National Sample Survey of Registered Nurses--February 2002,
confirm that of the approximately 2.7 million registered nurses in the
nation, only about 82 percent of these nurses were working full-time or
part-time in nursing. In addition to the shrinking pipeline of nurses
coming into the program, the dominant factor in this shortage is the
impending retirement of up to 40 percent of the workforce by 2010 or
soon thereafter. This will occur at the same time that the needs of the
aging baby boomer population will markedly increase demand for health
care services and the services of registered nurses.
This critical demand is reinforced by the fact that in February
2004, the U.S. Bureau of Labor released statistics detailing how
registered nurses have the largest projected 10-year job growth in the
United States, with about 1 million new job openings by 2010. In
addition to the care provider shortage, nursing faculties are also
decreasing in number, requiring universities to decline acceptance to
qualified nursing school applicants. The Southern Regional Education
Board states that with faculty vacancies and newly budgeted positions,
there has been a 12 percent shortfall in the number of nurse educators
needed to train nursing applicants. The entire nursing workforce needs
strengthening. As a result, it will take long-term planning and
innovative initiatives at the local, state and federal level to assure
an adequate supply of a qualified nurse workforce for the nation.
NURSE WORKFORCE DEVELOPMENT PROGRAMS
AWHONN recommends a total of $210 million for fiscal year 2006 to fund
the Nurse Workforce Development programs in Title VIII
The Nurse Education Act (Public Health Service Act, Title VIII),
enacted in 1964, represents the only comprehensive federal legislation
to provide funds for nursing education. The programs authorized in this
portion of Public Law 105-392 help schools of nursing and nursing
students prepare to meet patient needs in a changing health care
delivery system, favoring programs in institutions that train nurses
for practice in medically underserved communities and Health
Professional Shortage Areas.
Reauthorized as the Nursing Workforce Development section in 1998,
the new NEA gives the Department of Health and Human Services more
discretion over the focus of federal spending. In 2002, Congress
enacted the Nurse Reinvestment Act, which provides funding for new and
expanded programs. These programs include scholarships, career ladders,
internships and residencies, retention programs, and faculty loans
designed to encourage students to consider nursing, keep nurses in the
field, and ensure that nurse educators are plentiful enough to educate
future nurses that we desperately need. The new programs received an
initial appropriation of $20 million in fiscal year 2003, which was in
addition to $93 million in funding provided for existing Title VIII
programming. Unfortunately, due to limited funding in the first 2 years
of the new authorization, the loan and scholarship programs have not
been successful in providing support to students in nursing schools. In
the first year, only 574 loan repayment contracts were made nationally,
averaging roughly 11 loan repayment agreements per state, and less than
2 percent of all scholarship applicants were funded.
The shortage of registered nurses and the effect of the shortage on
nurse staffing and patient safety demand a significant increase in
funding for these programs. Nursing is the largest health profession
with over 2.7 million nurses, yet only one-fifth of 1 percent of
federal health funding is directed to nursing education. A significant
increase in funding for these programs would lay the groundwork to
expand the nursing workforce, through education and clinical training
and retention programs, in order to address some of the serious
shortage issues.
The nursing shortage is not confined solely to care providers;
there is also a growing, significant shortage of nurse faculty. The
American Association of Colleges of Nursing (AACN) reports that the
average age of nursing professors is 52, and for associate professors
the average age is 55. The impending retirement of these seasoned
educators will impact the ability of our schools and universities to
meet the educational health care needs of the nation. According to
AACN, U.S. nursing schools turned away almost 16,000 qualified
applicants to baccalaureate nursing programs in 2003 due to
insufficient faculty, clinical sites, classroom space, and budget
constraints. Additionally, 125,000 qualified applicants were turned
away from nursing programs at all levels across the United States in
2004 according to the National League for Nursing.
While the capacity to implement faculty development is currently
available through Section 811 and Section 831, adequate funding and
direction is needed to ensure that these programs are fully
operational. Options to provide support for full-time doctoral study
are essential to rapidly prepare the nurse educators of the future.
AWHONN recommends that a portion of the funds be allocated for faculty
development and mentoring.
Further, AWHONN recognizes the importance of appropriate
investments in advanced practice nursing programs. As in other
professions the advanced degree has become a necessary achievement for
career advancement, and registered nurses who pursue the MSN degree are
a part of the cadre of nurses who go on to become faculty. Our nation
needs more nurses with basic training to enter the field, but focusing
only on these nurses addresses just half of the problem. The nursing
shortage encompasses nursing faculty; both advanced practice nursing
and basic nursing must receive additional funding but not one at the
expense of the other.
MATERNAL AND CHILD HEALTH BUREAU
AWHONN recommends $850 million in funding in fiscal year 2006 for the
Maternal and Child Health Bureau
This program provides comprehensive, preventive care for mothers
and young children, as well as an array of coordinated services for
children with special needs. In fact, the Maternal Child Health Block
Grant (MCH) serves over 80 percent of all infants in the United States,
half of all pregnant women, and 20 percent of all children.
MCH programs are facing increased demands for services due to
continued growth in the Children's Health Insurance Program, which in
turn identifies more children who are eligible for other MCH Services.
Title V complements Medicaid and the State Children's Health Insurance
Program by providing ``wrap-around'' services and enhanced access to
care in underserved areas. Additional funding would give states the
resources they need to expand prenatal and infancy home visitation
programs, an approach that has been shown, in NINR research, to improve
the prenatal health-related behavior of women and reduce rates of child
abuse and neglect as well as maternal welfare dependence.
INDIAN HEALTH SERVICE
AWHONN recommends an fiscal year 2006 appropriation of $5.54 billion
for IHS
The Indian Health Service (IHS) is the principal federal health
care provider and health advocate for Indian people with the goal of
``ensur[ing] that comprehensive, culturally acceptable personal and
public health services are available and accessible to all American
Indian and Alaska Native people.'' IHS is tasked with an enormous
responsibility in providing care to over half of the American Indian
population.
The American Indian and Alaska Native people have long experienced
lower health status when compared with other Americans. Lower life
expectancy and the disproportionate disease burden exist perhaps
because of inadequate education, poverty, discrimination in the
delivery of health services, and cultural differences. These are broad
quality of life issues rooted in economic adversity and poor social
conditions.
A recent study of federal health care spending per capita found
that the United States spends $3,803 per year per federal prisoner,
while spending about half that amount for a Native American: $1,914.
Per capita health care spending for the U.S. general population is
$5,065 per year. A significant increase in funding over fiscal year
2005 spending levels is necessary for the federal government to fulfill
its responsibility to Indian Country and achieve its stated goals.
While the nursing shortage continues nationwide, IHS has been
disproportionately affected by the lack of RNs. IHS nurses are older,
with an average age of 48, and nearly 80 percent of RNs are over the
age of 40. Further, the average vacancy rate for RNs is 14 percent. IHS
administers three interrelated scholarship programs designed to meet
the health professional staffing needs of IHS and other health programs
serving Indian people. These programs are severely under-funded.
Targeted resources need to be invested in the IHS health professions
programs in order to recruit and retain registered nurses in Indian
Country.
Additionally, Section 112 of the Indian Health Care Improvement
Act, Public Law 94-437, authorizes grants to public or private schools
of nursing, tribally-controlled community colleges and tribally-
controlled post secondary vocational institutions for the purpose of
recruiting, training and increasing the number of professional nurses
who deliver health care services to Indian people. On average, Section
112 programs provide five undergraduate scholarships per year and two
master's program scholarships. This important program should be
expanded to provide many more scholarships, both at the undergraduate
and graduate levels, in an effort to offer meaningful relief to the
nursing shortage for IHS healthcare providers and the patients they
serve.
NATIONAL INSTITUTE OF NURSING RESEARCH (NINR)
AWHONN recommends an increase of $22 million over fiscal year 2005
funding levels for the NINR, resulting in an fiscal year 2006
appropriation of $160 million
NINR engages in significant research affecting areas such as health
disparities in ethnic groups, training opportunities for management of
patient care and recovery, and telehealth interventions in rural/
underserved populations. This research allows us to refine the practice
and provide quality patient care in its current challenging
environment.
NINR research contributes to or results in improved health outcomes
for women. Recent public awareness campaigns target differences in the
manifestation of cardiovascular disease between men and women. The
differing symptoms are the source of many missed diagnostic
opportunities among women suffering from the disease, which is the
primary killer of American women. In a study funded by NINR,
researchers were able to qualitatively analyze the intensity of pain
and limitation of activity experienced by women suffering from angina,
both of which were found to be of greater intensity than that
experienced by men. The study concluded that the gender variation could
significantly impact diagnosis and treatment of female patients
suffering from related cardiovascular problems.
Because of the emphasis on biomedical research in this country,
there are few sources of funds for high-quality behavioral research for
nursing other than NINR. It is critical that we increase funding in
this area in an effort to optimize patient outcomes and decrease the
need for extended hospitalization.
NATIONAL INSTITUTE OF CHILD HEALTH AND HUMAN DEVELOPMENT (NICHD)
AWHONN supports an increase in funding for NICHD for fiscal year 2006,
bringing the appropriation to $1.35 billion
NICHD seeks to ensure that every baby is born healthy, that women
suffer no adverse consequences from pregnancy, and that all children
have the opportunity for a healthy and productive life unhampered by
disease or disability. With increased funding, NICHD could expand its
use of the NICHD Maternal-Fetal Medicine Network to study ways to
reduce the incidence of low birth weight. Prematurity/low birthweight
is the second leading cause of infant mortality in the United States
and the leading cause of death among African American infants. AWHONN,
like many organizations directly involved in programs to improve the
health of women and newborns, looks to NICHD to provide national
initiatives, such as the Maternal-Fetal Medicine Network that assists
with the care of pregnant women and babies.
Recently NICHD released research indicating they may have found a
test to predict preeclampsia in patients before the life-threatening
complication, affecting five percent of all pregnancies, occurs.
Abnormal levels of placental growth factor (PlGF) were found in the
urine of pregnant women who later developed preeclapmsia. Once NICHD
screens for women who are high risk for developing preeclampsia, this
group can be studied to prevent or cure this complication. This finding
is a promising lead in the effort to prevent and cure preeclampsia.
NATIONAL INSTITUTES OF ENVIRONMENTAL HEALTH SCIENCES (NIEHS)
AWHONN supports an increase in funding for NIEHS for fiscal year 2006,
bringing the appropriation to $680 million
Research conducted by the NIEHS plays a critical role in what we
know about the relationship between our environmental exposures and
disease onset. Through the research sponsored by this Institute, we
know that Parkinson's disease, breast cancer, birth defects,
miscarriage, delayed or diminished cognitive function, infertility,
asthma and many other diseases and ailments have confirmed
environmental triggers. Our expanded knowledge, as a result, allows
both policy makers and the general public to make important decisions
about how to reduce toxin exposure and reduce the risk of disease and
other negative health outcomes.
One impressive collaborative research project spearheaded by the
NIEHS is the recent partnering of public and private funding agencies
that will examine how better community design encourages people to be
more physically active in their daily lives. Researchers will identify
how our built environment contributes to obesity and how environmental
changes can combat a growing public health problem. The NIEHS will
examine the program's impact on physical activity, obesity, and other
health indicators.
CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC)
AWHONN recommends an fiscal year 2006 appropriation of $8.65 billion
for the CDC
For nearly 60 years, the Centers for Disease Control and Prevention
(CDC) has evolved to assume responsibility for programs in infectious
disease surveillance, control and prevention, injury control, health in
the workplace, prevention of heart disease, cancer, stroke, obesity and
other chronic diseases, improvements in nutrition and immunization,
environmental effects on health, prevention of birth defects,
laboratory analyses, outbreak investigation and epidemiology training,
and data collection and analysis on a host of vital statistics and
other health indicators. Now more than ever, CDC's role in protecting
the nation's health through prevention has become evident as we address
issues of terrorism, emergency preparedness and health system capacity
and infrastructure. Increased funding for CDC is critical.
Birth Defects
For over 30 years, CDC has been deeply involved in the prevention
of birth defects through programs like the Folic Acid Education
Campaign and the new National Center on Birth Defects and Developmental
Disabilities (NCBDDD). The public health impact of birth defects is
tremendous. Of the four million babies born each year in the United
States, approximately 120,000 are born with a serious birth defect.
According to CDC, the lifetime costs of caring for infants born in
1992, with at least one birth defect \1\ or cerebral palsy was about $8
billion. The emotional and financial burden for the families with
affected children is devastating. CDC funds several programs critical
to reducing the number of children born with birth defects, including
funding to states for birth defects tracking systems. Due to lack of
funds, CDC is only able to fund 15 states in fiscal year 2005, which is
down from 28 states in fiscal year 2004. Additional funding for these
grants is needed to fund all of the states seeking CDC assistance for
these critical surveillance programs.
---------------------------------------------------------------------------
\1\ These birth defects include: Spina bifida, truncus arteriosus,
single ventricle, transposition/double outlet right ventricle,
Tetralogy of Fallot, tracheo-esophageal fistula, colorectal atresia,
cleft lip or palate, atresia/stenosis of small intestine, renal
agenesis, urinary obstruction, lower-limb reduction, upper-limb
reduction, omphalocele, gastroschisis, Down syndrome, and diaphragmatic
hernia.
---------------------------------------------------------------------------
Cardiovascular Disease
Cardiovascular disease is the leading cause of death in the United
States, causing one death every 34 seconds and $393.5 billion a year in
direct and indirect healthcare costs, according to the American Heart
Association. The CDC reports that almost one-fourth of the U.S.
population has some form of cardiovascular disease. Additionally, 65
percent of American adults are overweight or obese and nearly 16
percent of children and adolescents are overweight. Obesity is
considered a major public health problem because it serves as the
gateway disease for many other illnesses including but not limited to:
depression, type 2 diabetes, hypertension, stroke, and poor female
reproductive health and pregnancy complications.
These are but two examples of illnesses with programmatic public
health funding through CDC. Any cuts to these programs will potentially
leave millions of Americans without primary prevention programs that
ultimately save lives and money. AWHONN urges $8.65 billion in funding
for CDC chronic disease prevention and health promotion programs to
ensure that these programs have the resources necessary to translate
preventive health research into practice. This investment will save
lives and billions in health care costs and productivity.
SUMMARY RECOMMENDATIONS
A summary of AWHONN formal funding recommendations for these and
other federal health programs:
----------------------------------------------------------------------------------------------------------------
President's
Programmatic area Final fiscal year budget fiscal AWHONN's request
2005 \1\ year 2006
----------------------------------------------------------------------------------------------------------------
Nurse Workforce Development Programs................... $151,889,000 $150,000,000 $210,000,000
Maternal & Child Health Block Grant.................... 729,817,000 724,000,000 850,000,000
Indian Health Service.................................. 2,985,000,000 3,048,000,000 5,540,000,000
Title X--Family Planning............................... 288,283,000 286,000,000 350,000,000
Newborn Hearing Screening.............................. 9,872,000 ................. 13,000,000
AHRQ................................................... 319,000,000 319,000,000 440,000,000
NIH.................................................... 28,649,000,000 28,845,000,000 30,368,000,000
NINR................................................... 138,000,000 139,000,000 160,000,000
NICHD.................................................. 1,271,000,000 1,278,000,000 1,350,000,000
NIEHS.................................................. 645,000,000 648,000,000 680,000,000
CDC.................................................... 4,572,000,000 4,017,000,000 8,650,000,000
----------------------------------------------------------------------------------------------------------------
\1\ Fiscal year 2005 numbers taken from conference report on omnibus bill do not reflect a further .8% across-
the-board rescission.
Thank you for the opportunity to submit testimony on these critical
areas of funding.
______
Prepared Statement of the Blue Cross and Blue Shield Association
The Blue Cross and Blue Shield Association (BCBSA), which
represents 40 independent, locally operated Blue Cross and Blue Shield
Plans throughout the nation, is pleased to submit written testimony to
the subcommittee on fiscal year 2006 funding for Medicare contractors.
Blue Cross and Blue Shield Plans play a leading role in
administering the Medicare program. Many Plans contract with the
federal government to run much of the daily work of paying Medicare
claims accurately and timely. Blue Cross and Blue Shield Plans serve as
Part A Fiscal Intermediaries (FIs) and/or Part B carriers and
collectively process most Medicare claims.
This testimony focuses on three areas:
Background, including a description of Medicare contractor
functions;
Current financial challenges facing Medicare contractors; and
BCBSA recommendations for Medicare contractor fiscal year 2006
funding.
BACKGROUND
Blue Cross and Blue Shield Medicare contractors are proud of their
role as Medicare administrators. While workloads have soared, operating
costs--on a unit cost basis--have declined about two-thirds from 1975
to 2005. In fact, contractors' administrative costs represent less than
1 percent of total Medicare benefits.
Medicare contractors have four major areas of responsibility:
1. Paying Claims.--Medicare contractors process all the bills for
the traditional Medicare fee-for-service program. In fiscal year 2006,
it is estimated that contractors will process over 1.1 billion claims,
nearly 4 million every working day.
2. Providing Beneficiary and Provider Customer Services.--
Contractors are the main points of routine contact with Medicare for
both beneficiaries and providers. Contractors educate beneficiaries and
providers about Medicare and respond to over 50 million inquiries
annually.
3. Handling Hearings and Appeals.--Beneficiaries and providers are
entitled by law to appeal the initial payment determination made by
carriers and FIs. These contractors handle nearly 8 million annual
hearings and appeals.
4. Special Initiatives to Fight Medicare Fraud, Waste, and Abuse.--
All contractors have separate fraud and abuse departments dedicated to
assuring that Medicare payments are made properly. Few government
expenditures produce the documented, tangible savings of taxpayers'
dollars generated by Medicare anti-fraud and abuse activities. For
every $1 spent fighting fraud and abuse, Medicare contractors save the
government $14.
CURRENT FINANCIAL CHALLENGES
Of utmost importance to attaining outstanding performance is an
adequate budget. Medicare contractors have been underfunded since the
early 1990's, however, and the largest portion of the contractor
budget--Medicare operations--faces particularly severe funding
pressures. Medicare operations activities include claims processing,
beneficiary and provider education and communications, hearings and
appeals of claims initially denied, and systems maintenance and
security.
The underfunding of CMS and its Medicare contractors has gotten
even more acute since the passage of the Health Insurance Portability
and Accountability Act (HIPAA), the Benefits Improvement and Protection
Act (BIPA), and the Medicare Modernization Act (MMA), which places new
responsibilities on contractors, without sufficient resources to
perform those duties. For example, between 1992 and 2002, Medicare
benefits outlays increased 97 percent; claims volume increased 50
percent; yet Medicare operations funding increased a mere 26 percent.
Contractor staffing only increased by 6 percent during this time even
though many new responsibilities were added and claims volume continued
to rise. Clearly funding has not kept pace with additional work. In
addition, the Medicare reform legislation includes significant changes
that will require additional resources on an ongoing basis for
contractors to implement.
Whenever possible, contractors respond to reduced funding by
achieving significant efficiencies in claims processing, but it is not
enough to keep pace with rising Medicare claims volume and diminishing
funding levels. It should be noted that contractors are already
extremely efficient. Currently, contractors' administrative costs
represent less than 1 percent of total Medicare benefits.
Inadequate budgets for Medicare operations also impact Medicare's
fight against fraud and abuse. While many think of Medicare operations
activities as simply paying claims, these activities are Medicare's
first line of defense against fraud and abuse and are critically linked
to activities under the separately-funded Medicare Integrity Program
(MIP). As an example, many of the front-end computer edits (e.g.,
preventing duplicate payments and detecting inaccurately coded claims
or claims requiring additional screening) are funded through Medicare
operations.
Inadequate funding impacts different functions at different times,
but always disrupts the integration of all the functional components
needed to ``get things right the first time.'' It thus results in
inefficiency and higher costs.
bcbsa fiscal year 2006 funding recommendations for medicare contractors
BCBSA is pleased that many Members of this subcommittee recognize
the need for adequate administrative resources at CMS. We are concerned
the Administration's fiscal year 2006 budget would significantly cut
Medicare operations funding by nearly $43 million. BCBSA urges Congress
to take the following steps to allow Medicare contractors to meet
increased workloads as well as beneficiary and provider needs:
A. Increase Medicare Contractor Operations Funding to $2,240 Million
for fiscal year 2006
Medicare contractors continue to face increases in Medicare claims
volume. Further reductions in administrative costs, as proposed in the
President's budget, would seriously jeopardize contractors' ability to
administer Medicare. BCBSA recommends:
1. Claims processing funding must be maintained at $812 million
($10 million more than President's budget).--The President's budget
would decrease claims processing funding by $10 million under the
assumption that beneficiary movement to Medicare Advantage plans will
decrease contractor workloads, particularly in claims processing,
appeals and inquiries. BCBSA disagrees with this assumption.
While BCBSA recognizes a slight reduction in claims, appeals, and
inquiries could occur, the amount is highly uncertain. In fact, data
suggests claims volume will increase by 4 percent in fiscal year 2006.
Congress must ensure funding is available should volume and costs be
higher than anticipated. Otherwise, contractors will be faced with
budget shortfalls that will result in reduced services for
beneficiaries and providers.
2. Appeals funding must be restored to $109 million ($12.5 million
more than the President's budget).--The President's budget would
decrease appeals funding by $25 million under the assumption that the
new Qualified Independent Contractors (QICs) will take on certain
appeals responsibilities, lessening the load for contractors. BCBSA
disagrees with this assumption.
Appeals workloads and costs are on the rise for several reasons.
First, implementation of the QICs is behind schedule, requiring
contractors to continue some of this work. Second, contractor
interfaces with QICs require funding to prepare the case and transfer
information. Third, CMS recently announced it will eliminate provider
phone appeals, which cost $10 compared to $19 for written appeals, and
require separate written notification of favorable determinations.
3. Inquires funding must be increased to $232 million ($27 million
more than the President's budget).--The President's budget would
decrease inquiries funding by $17 million under the assumption that
CMS' 1-800-MEDICARE call volume will continue to increase, diminishing
work at the contractor site. BCBSA disagrees with this assumption.
While Medicare contractor call volume may decrease, the complexity
and length of the call is increasing significantly. CMS often refers
complex beneficiary and provider inquiries to the Medicare contractor
that originally processed the claim. Further, CMS implemented a new
Provider Customer Service Program required by the Medicare
Modernization Act, but did not account for its costs in the fiscal year
2006 budget.
B. Increase Flexibility and Funding for the Medicare Integrity Program
(MIP)
Congress created MIP in 1996 to provide a permanent, stable funding
authority for the portion of the Medicare contractor budget that is
explicitly designated as fraud and abuse detection activities. Despite
the continued rise in claims, MIP funding has been capped at $720
million since fiscal year 2003. In fact, claims volume increased by
more than 16 percent (158 million claims) since MIP was last increased.
Clearly, benefit integrity activities cannot keep pace with rising
claims volumes without additional funding. BCBSA recommends Congress:
--Authorize an automatic yearly increase in MIP consistent with the
rate of inflation and increase in claims volume;
--Direct a portion ($20 million) of the new Part D oversight funding
toward MIP Part A and B activities; and
--Urge CMS to give contractors greater flexibility to manage their
Medicare Integrity budgets.
The following chart highlights BCBSA's request compared to fiscal
year 2005 and the President's fiscal year 2006 request.
[In millions of dollars]
----------------------------------------------------------------------------------------------------------------
President's
Fiscal year fiscal year BCBSA fiscal
Medicare contractor budget 2005 2006 year 2006
recommendation recommendation
----------------------------------------------------------------------------------------------------------------
Medicare Operations............................................. 2,233 2,190 2,240
Medicare Integrity Program...................................... 720 720 740
-----------------------------------------------
Total Contractor Budget................................... 2,953 2,910 2,980
----------------------------------------------------------------------------------------------------------------
______
Prepared Statement of the Coalition of Northeastern Governors
The Coalition of Northeastern Governors (CONEG) is pleased to
provide this testimony for the record to the Senate Subcommittee on
Labor, Health and Human Services, Education, and Related Agencies
regarding fiscal year 2006 appropriations for the Low Income Home
Energy Assistance Program (LIHEAP). The Governors appreciate the
Subcommittee's consistent support for the LIHEAP program, and we
recognize the difficult decisions facing the Subcommittee in this time
of severe fiscal constraints. However, in light of sharply higher home
energy prices, we request the Subcommittee provide $3.4 billion in
regular fiscal year 2006 LIHEAP funding as well as the authority to
release emergency contingency funds for unforeseen circumstances, such
as price spikes in home heating fuels, severe weather and other
potential emergencies.
LIHEAP is a vital tool in making home energy more affordable for
almost 5 million of the nation's very low-income households--the
elderly and disabled on fixed incomes and families with young children.
The percentage of income spent on total home energy by these low-income
households can be four times higher than average households. For many
of these households, annual income is simply not sufficient to pay high
winter heating bills, even in periods of economic growth. Even after
taking constructive actions to reduce their home energy use, too many
low-income residents are forced to make dangerous choices between
heating their homes, paying the full rent or mortgage, seeking medical
attention, or purchasing food or vital medications.
The substantial rise in home heating fuel prices hits these
vulnerable citizens especially hard. The Northeast is heavily dependent
on deliverable home heating fuels such as home heating oil, kerosene,
and propane. In addition, price volatility in these fuels adversely
affects the low-income households who, without the disposable income to
purchase fuels off-season, typically enter the market when both the
demand for and price of fuels are high.
The Energy Information Administration predicts that the price of
home heating oil, propane, and natural gas will continue to rise this
year. Compared with 2001 to 2002, households can expect this winter to
pay 55 percent more to heat a home with natural gas, 93 percent more
for those heating with home heating oil, and 51 percent more for those
heating with propane. However, within this same time period, the annual
LIHEAP appropriation has increased modestly. In spite of the welcomed
increase in LIHEAP funding, only a fraction--approximately 15 percent
of eligible households--can be served at current LIHEAP funding. As a
result, states across the country in recent years have seen significant
increases in their regular LIHEAP caseloads, as well as in requests for
emergency assistance from those households in imminent danger of a
utility or fuel service cut-off. At current funding levels, states may
be faced with the prospect of serving even fewer eligible households,
reducing benefits, or curtailing the duration of the program. Clearly,
the projected need far outweighs the available funding.
Higher energy prices diminish the purchasing power of available
LIHEAP funding assistance. In addition, without funds to carryforward
to the new heating season, state LIHEAP programs lack the capability to
undertake the ``pre-buy'' programs that help stabilize heating fuel
prices for low-income households and expand the reach of limited
program funds. An increased federal appropriation would allow states to
manage the program resources in a manner to better take advantage of
market opportunities.
The current uncertainty of world energy markets underscores the
importance of states being able to prepare for rising and potentially
volatile energy prices. These preparedness activities, while critical,
cannot fully shield our lowest-income citizens from the impacts of
higher heating fuel prices. An increase in the regular LIHEAP
appropriation to $3.4 billion in fiscal year 2006 will enable states
across the nation to reach more of those vulnerable citizens in need of
assistance and more fully implement cost-effective measures to meet
their continuing energy needs.
Your support for fiscal year 2006 LIHEAP appropriations at the $3.4
billion level, as well as the authority to release emergency
contingency funds for unforeseen circumstances, is urgently needed to
enable our states to help mitigate the potential life-threatening
emergencies and economic hardship that confront the nation's most
vulnerable citizens.
We thank the Subcommittee for this opportunity to share the views
of the Coalition of Northeastern Governors, and we stand ready to
provide you with any additional information on the importance of the
Low Income Home Energy Assistance Program to the Northeast.
______
Prepared Statement of the Community Medical Centers
Mr. Chairman and Members of the Subcommittee: My name is Dr. Philip
Hinton and I am the Chief Executive Officer of Community Medical
Centers in Fresno, California. Community Medical Centers is a not-for-
profit, locally owned health care corporation that is committed to
improving the health of the community. I am pleased to provide the
subcommittee with a request for assistance in securing federal monies
for a critical project in the Central San Joaquin Valley that would
improve access to health care to the uninsured in Fresno County.
The challenges and struggles facing our nation's public hospitals
and health systems are ever-increasing. The nation's uninsured
population continues to grow while there are significant reductions in
state and federal government support. Hence, it is imperative for
public hospitals to maximize their public funding sources while being
proactive and creative in its strategies to deliver care to those who
need it most.
Community Medical Centers serves as the ``safety net'' provider for
Fresno County. In its 1996 partnership with the County of Fresno,
Community assumed the obligations of indigent care. In order to fulfill
this obligation, last year Community provided over $90 million in
uncompensated care. However, as Community looks to the future, it has
determined the need for a more bold and aggressive strategy to meet the
tremendous need for health care services in Fresno County.
In its efforts to make health care available to the over 30 percent
of the County's residents who are uninsured, Community has planned an
Outpatient Care Center on the campus of the Regional Medical Center in
downtown Fresno. This proposed facility will provide primary and
specialty care including a children's clinic, a women's clinic focusing
on prenatal, obstetrical and gynecological needs, asthma treatment and
education, diabetes education and treatment, and surgical follow-up.
This facility addresses the need for primary care services to the
underinsured and uninsured population while attempting to reduce the
number of unnecessary visits to local emergency departments. Although
the overcrowding of emergency departments by the uninsured is a
national problem, the Fresno area is particularly impacted with a
larger percentage of uninsured.
In addition to a high percentage of uninsured, the region boasts
some equally sobering statistics:
--An unemployment rate hovering at 15 percent
--Over 25 percent of the residents living below the poverty line
--The third highest asthma mortality rate in the nation
--The highest rates of teen pregnancy in the state
--Late or no prenatal care for pregnant women
We believe that an Outpatient Care Center is critical to begin
addressing these challenges, and we would like to ask for your
assistance in securing $1 million towards the construction of this
facility. We at Community Medical Centers are working diligently to
secure significant private foundation monies for this facility as well.
We understand that this request would require a special earmark under
the Health Resources Services Administration account in the Labor/
Health and Human Services/Education appropriations bill. We know that
funds are limited, but feel that this project merits funding. It is a
project which will improve the quality of life in the Central San
Joaquin Valley.
______
Prepared Statement of the Council of State and Territorial
Epidemiologists
The Council of State and Territorial Epidemiologists (CSTE) is
pleased to provide the Subcommittee with its fiscal year 2006 funding
recommendations for nine priorities all of which are programs and
activities administered by the Centers for Disease Control and
Prevention.
CSTE is a professional association with over 850 public health
epidemiologists working in all 50 states as well as local and
territorial health agencies to detect, prevent and control conditions
that impact the public's health. CSTE members possess expertise in
surveillance and epidemiology in a broad range of areas including
communicable diseases, immunization, environmental health, chronic
diseases, occupational health, injury control, maternal and child
health and oral health.
PUBLIC HEALTH WORKFORCE: INCREASING STATE AND LOCAL EPIDEMIOLOGY AND
LABORATORY CAPACITY
--$4 million increase for CDC's Office of Workforce and Career
Development in fiscal year 2006 to support 65 CDC/Council of
State and Territorial first year applied epidemiology fellows
at a cost of $60,000 per year;
--$2 million in increased funding for CDC's National Center for
Infectious Diseases in fiscal year 2006 to support 35 CDC/
Association of Public Health Laboratory applied research
training fellows.
The disciplines of epidemiology and laboratory science are the
pillars and backbone of public health practice. States and local
communities have come to rely on well trained public health
epidemiologists and laboratory scientists to investigate, monitor, and
respond aggressively to public health threats. Every state's residents
have become familiar with the ``disease detectives'' who they know will
be in the lead for communicating risks and recommending preventive
action for outbreaks of SARS, flu, West Nile virus, Monkeypox and
epidemics of obesity, diabetes, HIV/AIDS and a host of other serious
threats the public has experienced during recent years. These are the
``go to'' professionals in every state. Yet, a new 2004 epidemiology
capacity survey shows the number and the level of training of
epidemiologists is perceived as seriously deficient in most states.
Federal funding has increased the number of epidemiologists engaged in
bioterrorism preparedness since 2002, but has done so at the expense of
state environmental health, injury and occupational health activities--
shifting epidemiologists from these activities to federal bioterrorism
preparedness priorities. Those engaged in chronic disease activities
have increased since 2002, but are still viewed as too low in number
and training and the number of epidemiologists engaged in infectious
disease activities has stagnated.
Efforts under the leadership of CDC have been made to begin
addressing these gaps at both the federal and state level. In addition
to expanded CDC Epidemic Intelligence Service and Career Epidemiology
Field Officers for state and local health departments, CDC is
supporting training fellowship programs for epidemiologists and
laboratory scientists who are expected to increase state capacity and
provide future leadership in these professions. CSTE applauds these
efforts and proposes aggressive expansion of existing state-focused
programs to increase the number of epidemiologists and public health
laboratory scientists at state and local health departments. The
proposed fiscal year 2006 increase will provide CSTE and APHL with the
resources to accelerate much needed expansion of the state and local
workforce in these critical disciplines to approximately 75
epidemiologists and 75 laboratory scientists in training during fiscal
year 2006.
The overall benefits to the states and localities will be
additional well trained epidemiologists and laboratory scientists
entering employment through training programs that include the
following characteristics:
--national recruiting through a partnership between CSTE and the
Association of Schools of Public Health
--orientation and training course with CDC and CSTE and APHL faculty
--a ready-made applicant pool for state and local positions with
adequate time to evaluate job performance
--a structured, individualized training curriculum for each fellow
--technical and administrative support for fellows and state mentors
public health infrastructure enhancement and terrorism preparedness
CSTE supports $927 million, at a minimum, for CDC's State and Local
preparedness grants to enhance capacity to prepare for and respond to
terrorist attacks. The President's fiscal year 2006 request for CDC's
State and local terrorism preparedness grants cuts funding by $130
million and appears to shift this funding to National Stockpile
activities, including a new $50 million Federal Mass Casualty
Initiative. CSTE opposes this cut to on-going efforts to build strong
state and local capacity which means, in many cases, eliminating
personnel already hired. New federal initiatives, if they are deemed
needed, should be funded from new resources.
After decades of neglect of governmental public health systems,
documented in numerous Institute of Medicine (IOM) reports, and Reports
to Congress (The Future of the Public's Health in the 21st Century,
IOM, 2003; Emerging Microbial Threats to Health in the 21st Century,
IOM, 2003; Report to Congress, Public Health's Infrastructure: a Status
Report, CDC, 2001; Emerging Infectious Diseases: Consensus on Needed
Laboratory Capacity could Strengthen Surveillance, GAO, 1999), Congress
and the Administration began a substantial effort to repair the damage
following the events of 9/11 and the ensuing anthrax attacks. This
effort to restore and enhance the system to protect the public against
terrorist attacks, as well as naturally occurring disease threats, such
as SARS, pandemic influenza, and West Nile virus, is beginning to have
positive effect, but progress can only continue with sustained support.
Reasons for maintaining funding levels in fiscal year 2006:
--No single State, and no community in any State, has reached a full
level of national security preparedness to address the health
consequences of a terrorist event.
--Few public health preparedness investments are one-time expenses.
State and local health departments have been strongly urged to
use preparedness funding to increase their personnel capacity
in epidemiology, laboratory science, communications and
logistics. Personnel are on-going expenses.
--State and local health departments are in the third year of
expanded funding for terrorism preparedness. The effect of
reducing the amount of available funding by 14 percent will
seriously jeopardize their momentum in addressing critical
capacity needs.
--The CDC cooperative agreement guidance listed several new
eligibility areas for State spending, including mental health,
chemical preparedness, and food security and newly expanded
guidance is expected for fiscal year 2005. In addition, States
are being asked to help administer several new federal programs
such as BioWatch, BioSense, ChemPack, additional smallpox
vaccination program activities, and consequence management for
postal facility Biohazard Detection Systems. This requires
spreading funding over increased areas of responsibility.
Now is not the time to reduce our national commitment to State and
local health departments. Building a strong public health
infrastructure, particularly a trained public health workforce with
sufficient epidemiologists and public health laboratory scientists,
core public health professionals, will take a sustained commitment of
resources over a long period of time, but will reap critical benefits
in protected health.
cste supports $132 million for the phhs block grant in fiscal year 2006
The Preventive Health and Health Services Block Grant, currently
funded at $132 million, is proposed to be eliminated in the President's
fiscal year 2006 budget. CSTE urges Congress not to cut this important
prevention program for states, but maintain funding at the fiscal year
2005 level. When this proposed cut is considered alongside the $130
million cut in the state and local Bioterrorism grant program, the net
result is to seriously undermine support for developing state public
health capacity and activities, a strong Congressional goal leading up
to and following the attacks of 9/11.
The Block Grant was created to help states focus on achieving the
health objectives identified in Healthy People 2010--a nationally
conceived effort to set and achieve national health goals. To receive
block grant funding, states must develop health plans, report to the
federal government about their activities, and target public health
interventions to populations in need. The flexibility of the grant
allows each state to address their own unique challenges in exciting
and innovative ways.
Examples of this include a program in Idaho to prevent falls for
older adults. Falls are the leading cause of injury death for Idaho
adults age 65 and older, with hip fractures along costing the United
States $20 billion annually. The Idaho program funds a curriculum and
provides training to individuals who lead senior fall prevention
exercise programs throughout the state. Another example is in Alabama
where the Community Waterborne Disease Program, funded solely with PHHS
Block Grant dollars protects 340,000 Alabamians who reside in rural
areas against waterborne disease outbreaks from contaminated wells and
septic tanks. Other Block Grant funds are used to combat newly emerging
public health threats, such as West Nile virus, distribute smoke
detectors, counter the growing epidemic of obesity and ensuing chronic
diseases, improve cancer screening, conduct disease surveillance and
infectious disease outbreaks, such as Hepatitis A and E.coli 0157:H7.
While Block Grant funds sometimes complement existing categorical
programs, they DO NOT DUPLICATE other CDC funded programs.
CSTE SUPPORTS $250 MILLION FOR INFECTIOUS DISEASES CONTROL IN FISCAL
YEAR 2006
Infectious diseases are the leading cause of death worldwide, and
the number of deaths from infectious diseases had been increasing in
the recent past and remains substantial in the United States today. New
challenges in the growth of resistance to commonly used antibiotics,
emerging disease threats such as avian flu, SARS, the rapid spread of
West Nile virus across the United States, and the rising number of food
borne disease outbreaks, including increased monitoring of mad cow
disease, make increased resources for infectious diseases control
essential to the nation's health and well-being.
CSTE's fiscal year 2006 recommendation for infectious diseases
control is $25 million more than the fiscal year 2005 appropriation
level of $225.5 million. CSTE urges that the additional $25 million in
funding target the following critical areas:
--Expand the Emerging Infections Program (EIP) from its current
funding level of about $20 million to allow more than the
current 11 States (CA, CO, CT, GA, MD, MA, NM, NY, OR, TN, TX)
to join this program that provides a population-based network
of surveillance for infectious diseases, applied epidemiologic
and laboratory research, as well as capacity for flexible
public health response.
--Provide support for epidemiology fellowship programs to expand the
number of trained public health epidemiologists, particularly
at the State level, where shortages in these essential public
health professionals are severe.
--Expand the Epidemiology and Laboratory Capacity (ELC) cooperative
agreement program which provides the 50 States, plus six large
local health departments (Chicago, Houston, Los Angeles, New
York City, Philadelphia, Washington, D.C.) and Puerto Rico,
with support to strengthen the collaboration between
epidemiologic and laboratory science at the State and local
level to meet the demands placed upon the country by emerging
and re-emerging infectious disease threats.
--Ensure that funding for CDC's new initiative in global infectious
diseases supports the International Emerging Infections
Program, which is modeled on the U.S. EIP program.
CSTE SUPPORTS $50 MILLION FOR CDC'S HEALTH TRACKING GRANT PROGRAM IN
FISCAL YEAR 2006
Researchers have linked specific diseases with exposures to some
environmental hazards, such as the link between exposure to asbestos
and lung cancer. Other links remain unproven, such as the suspected
link between exposure to disinfectant by-products and bladder cancer.
As the Pew Environmental Health Commission's report, ``America's
Environmental Health Gap: Why the Country Needs A Nationwide Health
Tracking Network'' noted, there is currently no national surveillance
system to investigate the possible links between these environmental
exposures and a number of diseases and conditions. Most states have
little environmental health capacity. The Environmental Public Health
Tracking Program is designed to increase state and local environmental
health capacity by providing resources to conduct surveillance of
health effects, exposures and hazards and their possible linkages.
Program Accomplishments
Since fiscal year 2002, CDC has supported 20 state and local health
departments to:
--Build environmental health capacity
--Increase collaboration between environmental and health agencies
--Identify and evaluate existing data systems
--Build partnerships with non-governmental organizations and
communities
--Develop model systems that link data
Additional funding would be used to:
--Fund additional state health departments to increase their
environmental health capacity
--Fund technical development activities to support a nationwide
network
--Expand training and education activities
--Expand collaboration with national partners to coordinate
technologic standards development efforts for the network
Surveillance: Four Priorities--Behavioral Risk Factor Surveillance
Survey (BRFSS).--Among the many important chronic disease programs
within CDC's Center for Chronic Disease Prevention, Health Promotion,
and Genomics which CSTE supports, a priority is the Behavioral Risk
Factor Surveillance Survey (BRFSS). CSTE urges continued progress
toward achieving a funding level of $18 million (+$10 million)--the
base amount needed to fully implement the survey. CSTE is very pleased
that Congress increased funding for the survey from $1.8 million where
it had remained for many years, to $6.9 million in fiscal year 2003 and
to $7.2 million in fiscal year 2004 and $7.6 million in fiscal year
2005. The BRFSS is a primary source of information to guide
intervention, policy decision, and budget direction at the local, state
and federal level for a host of health problems, especially chronic
diseases. It is the source of data for 24 of the 73 chronic disease
indicators, six areas of the Healthy People 2010 leading health
indicators and serves as the core source of surveillance for multiple
public health programs across the CDC. The additional funding provided
in fiscal year 2004 and fiscal year 2005 will significantly improve
data collection infrastructure, timeliness, and analysis that will not
only improve guidance for state-based public health activities, but
allow state to state comparisons, state to national comparisons, and a
more solid foundation for national resource and other decisions with
regard to a range of public health activities.
HIV/AIDS Surveillance.--Within a total recommendation of $1,049.2
million (+$386.6 m) for CDC's HIV/AIDS prevention activities, CSTE
urges an increase of $35 million in fiscal year 2006 for HIV/AIDS
surveillance cooperative agreements with state and local health
departments to strengthen HIV case reporting. Surveillance activities
are critical to the goal of preventing new HIV infections which can
save an estimated $195,000 in lifetime treatment costs per individual.
Persistent, significant funding gaps between what state and local
health departments have requested and what CDC can provide impede
attainment of national prevention goals. CSTE recommends, at minimum,
an additional $35 million for HIV/AIDS core surveillance, enhanced
perinatal surveillance, incidence surveillance, behavioral surveillance
and morbidity monitoring.
National Violent Death Reporting System.--Within a total
recommendation of $168 million (+$30 m) for CDC's National Center for
Injury Prevention and Control, CSTE urges $10 million in funding for
fiscal year 2006 (+$6.8 million) to continue building a fully
implemented violent death reporting system in every state. Information
from the reporting system can be used to target prevention and early
intervention efforts to prevent a significant number of the 50,000
annual deaths in the United States due to violence. Increased resources
in fiscal year 2006 would be used to create uniform reporting systems
in more states and build capacity to both collect and analyze data;
ensure leadership and assistance; establish strong partnerships among
federal, state, and non-governmental organizations; and research
potential barriers to data collection. As of August, 2004, CDC is
funding 17 states: AK, CA, CO, GA, KY, MA, MD, NC, NJ, NM, OK, OR, RI,
SC, UT, VA, WI.
State-Based Occupational Safety and Health Surveillance.--Within a
total recommendation of $335 million (+$49 m) for CDC's NIOSH
activities, CSTE urges that $10 million be provided in fiscal year 2006
to fully fund this program to prevent workplace injuries, diseases and
death.. Both the CDC and CSTE believe that programs should be
established within State Health departments as one of the most
effective ways to build a nationwide system to prevent major causes of
injuries and illnesses that are caused by hazardous conditions at work.
The CDC and CSTE have established 13 occupational health indicators
that every State should use to measure the burden of workplace injuries
and illnesses, and then determine where they need to act to reduce
preventable disease and disability in the population. In fiscal year
2005, NIOSH has funded the first 12 States to establish programs to use
these indicators to count workplace injuries and illnesses, and make
recommendations about how to prevent a few important health conditions
(such as asthma, pesticide illness, silica lung diseases, and
needlesticks). This program should be expanded to all 50 States to
assure that every State has the capacity to track work-related health
problems and take steps to prevent work-related injury, disease and
death. Professional judgment assesses that $10 million is needed to
expand this program to all 50 States.
______
Prepared Statement of the Friends of the Health Resources and Services
Administration (HRSA)
The Friends of HRSA is an advocacy coalition of more than 100
national organizations, collectively representing millions of public
health and health care professionals, academicians and consumers. Our
member organizations strongly support programs that assure Americans'
access to health services.
HRSA programs assure that all Americans have access to our nation's
best available health care services. Through its programs in thousands
of communities across the country, HRSA provides a health safety net
for medically underserved individuals and families, including 45
million Americans who lack health insurance; 49 million Americans who
live in neighborhoods where primary health care services are scarce;
African American infants, whose infant mortality rate is more than
double that of whites; and the estimated 850,000 to 950,000 people
living with HIV/AIDS. Programs to support the underserved place HRSA on
the front lines in erasing our nation's racial/ethnic and rural/urban
disparities in health status. HRSA funding goes where the need exists,
in communities all over America. The Friends support a growing trend in
HRSA programs to increase flexibility of service delivery at the local
level, necessary to tailor programs to the unique needs of America's
many varied communities. The agency's overriding goal is to achieve 100
percent access to health care, with zero disparities. In the best
professional judgment of the members of the Friends of HRSA, to respond
to this challenge, the agency will require a funding level of at least
$7.5 billion for fiscal year 2006.
Through its many programs and new initiatives, HRSA helps countless
individuals live healthier, more productive lives. In the 21st century,
rapid advances in research and technology promise unparalleled change
in the nation's health care delivery system. HRSA is well positioned to
meet these new challenges as it continues to provide first-rate health
care to the nation's most vulnerable citizens. We are grateful to the
Subcommittee for your consistent strong support for all of HRSA's
programs, including the initiatives in terrorism preparedness and
response in the past. Unfortunately, the president's budget overall
recommends a massive $838 million or over 12 percent cut to the agency
for fiscal year 2006. We urge the members of the Subcommittee to
restore the cuts and fund the agency at a level that allows HRSA to
effectively implement these important programs.
Community-based health centers and National Health Service Corps-
supported clinics form the backbone of the nation's safety net. More
than 4,000 of these sites across the nation provide needed primary and
preventive care to nearly 15 million poor and near-poor Americans. HRSA
primary care centers include community health centers, migrant health
centers, health care for the homeless programs, public housing primary
care programs and school-based health centers. Health centers provide
access to high-quality, family-oriented, culturally and linguistically
competent primary care and preventive services, including mental and
behavioral health, dental and support services. Nearly three-fourths of
health center patients are uninsured or on Medicaid, approximately two-
thirds are people of color, and more than 85 percent live below 200
percent of the poverty level. Additional primary care is provided by
2,700 clinicians in the National Health Service Corps. Corps members
work in communities with a shortage of health professionals in exchange
for scholarships and loan repayments. The Friends of HRSA are pleased
that the president has requested a significant 17.5 percent increase
for Community Health Centers for a total of $2.038 billion.
The Friends are concerned about a number of programs slated for
deep cuts or elimination under the Administration's fiscal year 2006
budget proposal. An adequate, diverse, well-distributed and culturally
competent health workforce is indispensable to our national readiness
efforts. We are concerned with the president's proposed cut for
hospital preparedness. In the post 9/11 era, all responders, providers
and facilities must be ready to detect and respond to complex
disasters, including terrorism, and HRSA must continue to support these
vital programs.
HRSA Health Professions Programs under Title VII and VIII address
the need for an adequate national workforce in the face of projected
nationwide shortages of nurses, pharmacists, and other professionals.
Graduates of these programs are up to 10 times more likely to practice
in underserved areas, and they are up to 5 times more likely to be
minorities. These programs provide support to students, programs,
departments, and institutions to improve the accessibility, quality,
and racial and ethnic diversity of the health care workforce. In
addition to providing unique and essential training and education
opportunities, these programs help meet the health care delivery needs
of the areas in this country with severe health professions shortages,
at times serving as the only source of health care in many rural and
disadvantaged communities. The Friends are greatly concerned about the
elimination of most funding for the Title VII health professions
training programs and flat funding for Title VIII nurse training.
The Healthy Community Access Program is an example in which
communities build partnerships among health care providers to deliver a
broader range of health services to their neediest residents. Grantees
are public or private entities that demonstrate a commitment to
bridging service gaps and improving health outcomes for uninsured and
underserved people. The Friends are very concerned that the
Administration's budget proposal once again recommends eliminating this
program of coordinated service delivery, an innovative program that
does not duplicate other available programs.
Another vital program administered by HRSA is newborn screening.
Newborn screening is a public health activity used for early
identification of infants affected by certain genetic, metabolic,
hormonal or functional conditions for which there is effective
treatment or intervention. Screening detects disorders in newborns
that, left untreated, can cause death, disability, mental retardation
and other serious illnesses. Parents are often unaware that while
nearly all babies born in the United States undergo newborn screening
tests for genetic birth defects, the number and quality of these tests
vary from state to state. Screening programs coordinated through the
HRSA Bureau of Maternal and Child Health will assure that every baby
born in the US receive, at a minimum, a universal core group of
screening tests regardless of the state in which he/she is born.
Title 26 of the Children's Health Act of 2000 authorized funding
for grants and programs to improve state-based newborn screening. This
provision also called for an advisory committee to provide advice and
recommendations to the Secretary for the development of grant
administration policies and priorities, and to enhance the ability of
the Secretary to reduce mortality or morbidity from heritable
disorders. The Secretary appointed 15 members to this committee in
February 2004. HRSA, together with this committee, recently published a
report to be considered by the Secretary, which makes recommendations
on the number and types of conditions that should be required by state
programs. The Friends are very concerned that the Administration's
budget did not include additional funding for such activity and that
once again, the President's budget zeroed-out existing funding for the
universal newborn hearing screening program. The newborn screening
program is vital to ensuring that newborns are screened and treated for
conditions that, if left alone, disability, mental retardation and even
death.
HRSA programs improve health care service for the more than 61
million people who live in rural America. Although almost a quarter of
the population lives in rural areas, only an eighth of our doctors work
there. Because rural families earn less than urban families, many
health problems associated with poverty are more serious, including
high rates of chronic disease and infant mortality. While the recently
passed Medicare prescription drug bill included several enhancements
for Medicare reimbursement for rural hospitals, this does not justify
the elimination of small, targeted programs designed to improve access
to health care services in rural areas. The deep $115 million cut
proposed for rural health programs has the potential to only exacerbate
rural/urban health disparities seen today.
In light of many states experiencing budget crises, HRSA's State
Planning Grants Program provides one-year grants to States to develop
plans for providing access to affordable health insurance coverage to
all their citizens. Considering that 45 million Americans are
uninsured, with many individuals simultaneously being dropped from
Medicaid and SCHIP rolls, there is a need for states to explore
alternative approaches that provide health insurance benefits to its
residents that are affordable in nature. The potential for states to
share best practices as a result of this program is enormous, and
therefore the Friends of HRSA is gravely concerned with this program's
proposed elimination in the president's budget request.
Also, the proposed elimination of the Emergency Medical Services
for Children Program is of concern considering many children who are
eligible for Medicaid and SCHIP cannot enroll due to state enrollment
limits and budgetary pressures. Therefore, these uninsured children
will likely increasingly utilize emergency health services, as they are
less likely to have a usual source of care. Not investing in improving
the quality of emergency health services to children, especially at
this time, may result in higher rates of death and disability among
this population. Also, this program, as outlined in the midcourse
review of the EMSC Five-Year Plan, 2001-2005, has been shown to make
significant progress in meeting stated objectives to improve emergency
health service delivery to children.
The Friends of HRSA are also concerned with the proposed flat
funding of programs that make a difference in thousands of communities
across the United States, and ultimately affect the lives of millions.
The Maternal and Child Health Block Grant is another source of flexible
funding for states and territories to address their unique needs, and
remains in great need of increased, not flat, funding. The Block Grant
is one of several HRSA Maternal and Child Health programs. Each year,
more than 26 million pregnant women, infants and children nationwide
are served by a MCH program. Of the nearly 4 million mothers who give
birth annually, almost half receive some prenatal or postnatal service
from a MCH-funded program. MCH programs increase immunizations and
newborn screening, reduce infant mortality and developmentally
handicapping conditions, prevent childhood accidents and injuries, and
reduce adolescent pregnancy. Although states in theory could use MCH
block grant funds to continue the universal newborn hearing screening
and Emergency Medical Services for Children programs, two programs that
have been proposed for elimination, in reality this is not a viable
alternative. With the proposed flat funding of the block grant, funding
additional programs under its auspices would mean that programs
currently funded would have to be cut.
Title X of the Public Health Service Act was enacted to provide
high-quality, subsidized contraceptive care to those who need but
cannot afford such services, to improve women's health, reduce
unintended pregnancies, and decrease infant mortality and morbidity.
Title X programs provide comprehensive, voluntary and affordable family
planning services to millions of low-income women and men--many of whom
are uninsured--at more than 4,600 clinics nationwide. People who visit
Title-X funded clinics receive a broad package of preventive health
services, including breast and cervical cancer screening, blood
pressure checks, anemia testing, and STD/HIV screening.
The Ryan White CARE Act programs, administered by HRSA's HIV/AIDS
Bureau, are the largest single source of federal discretionary funding
for HIV/AIDS health care for low-income, uninsured and underinsured
Americans. We are very concerned that most programs under the Act would
be flat-funded should the figures requested by the Administration be
implemented, which will not be enough to meet the growing need and
demand for services. The CARE Act program is an important safety net
program, providing an estimated 533,000 people access to services and
treatments each year. In addition to primary health care, CARE Act
programs support the dissemination of drug therapies, home-based care,
early intervention services, treatment adherence, case management and
support. The CARE Act also funds a dental reimbursement program and the
AIDS Education and Training Centers that offers specialized clinical
education on the latest in HIV/AIDS care. Only the State AIDS Drug
Assistance Program (ADAP), which provides medications to over 120,000
individuals those living with HIV/AIDS who would otherwise fall through
the cracks, lacking private health insurance, but ineligible for
Medicaid, receives an increase of $10 million over fiscal year 2005.
Cross-cutting HRSA programs continually respond to new public
health challenges. Tooth decay remains the single most chronic
childhood disease in the nation. About 125 million Americans have no
dental insurance; lack of access to dental care is especially severe
among children of poor, rural and minority families. A quarter of the
nation's school-age children have 80 percent of all dental disease,
putting them at risk for a host of related illnesses. And as new drugs
help people with HIV/AIDS live longer, healthier lives, their need for
regular oral health care will continue to climb. HRSA can help both
groups by increasing the number of dentists in community and school-
based centers and by providing greater reimbursements to hospital
dental clinics and dental schools for the growing costs of treating
people living with HIV/AIDS.
The members of the Friends of HRSA are grateful for this
opportunity to present our views to the Subcommittee.
______
Prepared Statement of the InterTribal Bison Cooperative
INTRODUCTION AND BACKGROUND
My name is Ervin Carlson, a Tribal Council member of the Blackfeet
Tribe of Montana and President of the InterTribal Bison Cooperative.
Please accept my sincere appreciation for this opportunity to submit
testimony to the honorable members of the Appropriations Sub-Committee
on Labor, Health and Human Services and Education. The InterTribal
Bison Cooperative (ITBC) is a Native American non-profit organization,
headquartered in Rapid City, South Dakota, comprised of 54 federally
recognized Indian Tribes located within 18 States across the United
States.
Buffalo thrived in abundance on the plains of the United States for
many centuries before they were hunted to near extinction in the 1800s.
During this period of history, buffalo were critical to survival of the
American Indian. Buffalo provided food, shelter, clothing and essential
tools for Indian people and insured continuance of their subsistence
way of life. Naturally, Indian people developed a strong spiritual and
cultural respect for buffalo that has not diminished with the passage
of time.
Numerous tribes that were committed to preserving the sacred
relationship between Indian people and buffalo established the ITBC as
an effort to restore buffalo to Indian lands. ITBC focused upon raising
buffalo on Indian Reservation lands that did not sustain other economic
or agricultural projects. Significant portions of Indian Reservations
consist of poor quality lands for farming or raising livestock.
However, these wholly unproductive Reservation lands were and still are
suitable for buffalo. ITBC began actively restoring buffalo to Indian
lands after receiving funding in 1992 as an initiative of the Bush
Administration.
Upon the successful restoration of buffalo to Indian lands,
opportunities arose for Tribes to utilize buffalo for tribal economic
development efforts. ITBC is now focused on efforts to assure that
tribal buffalo projects are economically sustainable. Federal
appropriations have allowed ITBC to successfully restore buffalo the
tribal lands, thereby preserving the sacred relationship between Indian
people and buffalo. The respect that Indian tribes have maintained for
buffalo has fostered a serious commitment by ITBC member Tribes for
successful buffalo herd development. The successful promotion of
buffalo as a healthy food source will allow Tribes to utilize a
culturally relevant resource as a means to achieve self-sufficiency.
FUNDING REQUEST FOR PREVENTATIVE HEALTH CARE INITIATIVE
The InterTribal Bison Cooperative respectfully requests an
appropriation for fiscal year 2006 in the amount of $2,000,000 in the
form of an earmark to the Department of Health and Human Service
Department's budget. ITBC intends to utilize the funds to conduct a
national demonstration project focused on the delivery of bison meat to
Native Americans suffering from diet related diseases.
The Native American population currently suffers from the highest
rates of Type 2 diabetes. The Indian population further suffers from
high rates of cardio vascular disease and various other diet related
diseases. Studies indicate that Type 2 diabetes commonly emerges when a
population undergoes radical diet changes. Native Americans have been
forced to abandon traditional diets rich in wild game, buffalo and
plants and now have diets similar in composition to average American
diets. More studies are needed on the traditional diets of Native
Americans versus their modern day diets in relation to diabetes rates.
However, based upon the current data available, it is safe to assume
that disease rates of Native Americans are directly impacted by a
genetic inability to effectively metabolize modern foods. More
specifically, it is well accepted that the changing diet of Indians is
a major factor in the diabetes epidemic in Indian Country.
Approximately 65-70 percent of Indians living on Indian
Reservations receive foods provided by the USDA Food Distribution
Program on Indian Reservation (FDPIR) or from the USDA Food Stamp
Program. The FDPIR food package is composed of approximately 58 percent
carbohydrates, 14 percent proteins and 28 percent fats. Studies have
shown that the FDPIR food package has not been compatible with the
genetic compositions of Native Americans and has been a major factor in
the high incidence of diet-related disease among Native Americans.
Indians utilizing Food Stamps generally select a grain based diet and
poorer quality protein sources such as high fat meats based upon
economic reasons and the unavailability of higher quality protein food
sources.
Buffalo meat is low in fat and cholesterol and is compatible to the
genetics of Indian people. ITBC intends to develop a health care
initiative that would educate Indian Reservation families of the
benefits of incorporating buffalo meat into their diets. In conjunction
with educating Reservation families on the benefits of buffalo meat,
ITBC intends to develop methods to make buffalo meat accessible for
Indian families and to promote incorporation of buffalo into their
diets. ITBC intends to coordinate with Reservation health care
providers in nutritional studies of Reservation populations that
incorporate buffalo meat into diet packages.
ITBC believes that incorporating buffalo meat will positively
impact the diets of Indian people living on Reservations. A healthy
diet for Indian people that results in a lower incidence of diabetes
and other diet related illnesses will reduce Indian Reservation health
care costs and result in a savings for taxpayers.
FUNDING REQUEST FOR ITBC TRAINING AND LABOR PROGRAM
The InterTribal Bison Cooperative respectfully requests an
appropriation for fiscal year 2006 in the amount of $500,000. This
amount is $400,000 above the fiscal year 2005 appropriation for ITBC
and is critical to maintain last years funding level and to develop
ITBC's training and labor program.
In fiscal year 2005, the ITBC and its member Tribes were funded at
$100,000, a decrease of $200,000 from the previous year. ITBC is now
requesting $500,000 for fiscal year 2006 for job training as part of
ITBC's labor initiative. To insure the success of ITBC's buffalo
restoration efforts to Indian lands, training for the various jobs
related to the buffalo projects is essential. Most member Tribes of
ITBC have reservation unemployment rates of 72 percent. Jobs
opportunities on most Indian Reservations are limited, low-paying, and
often seasonal and temporary. The jobs created by buffalo restoration
to Indian lands will positively impact Tribal unemployment rates and
the overall Reservation poverty levels. Raising buffalo as an economic
development effort requires skilled labor in permanent employment. ITBC
has developed a job training program incorporating on-the-job training
and work experience for youth that specifically addresses the unique
needs of managing and maintaining buffalo. ITBC's training program
further focuses on strengthening the economic development opportunities
of buffalo restoration with training specific to meat processing,
veterinary science, wildlife and biological services, infrastructure
development, business and management training, and the overall
development of a skilled workforce.
Sufficient funding for job training is critical to the success of
the buffalo restoration projects. The increase in funding will ensure
that ITBC can provide job training, job growth training to ITBC member
tribes. Without funding at the requested level, the buffalo restoration
projects have less assurance of success.
ITBC GOALS AND INITIATIVES
In addition to developing a preventative health care initiative,
ITBC intends to continue with buffalo restoration efforts and the
Tribal buffalo marketing initiative.
In 1991, seven Indian Tribes had small buffalo herds, with a
combined total of 1,500 animals. The herds were not utilized for
economic development but were often maintained as wildlife only. During
ITBC's relatively short 10-year tenure, it has been highly successful
at developing existing buffalo herds and restoring buffalo to Indian
lands that had no buffalo prior to 1991. Today, through the efforts of
ITBC, over 35 Indian Tribes are engaged in raising over 15,000 buffalo.
All buffalo operations are owned and managed by Tribes and many
programs are close to achieving self-sufficiency and profit generation.
ITBC's technical assistance is critical to ensure that the current
Tribal buffalo projects gain self-sufficiency and become profit-
generating. Further, ITBC's assistance is critical to those Tribes
seeking to start a buffalo restoration effort.
Through the efforts of ITBC, a new industry has developed on Indian
reservations utilizing a culturally relevant resource. Hundreds of new
jobs directly and indirectly revolving around the buffalo industry have
been created. Tribal economies have benefited from the thousands of
dollars generated and circulated on Indian Reservations.
CONCLUSION
ITBC has proven highly successful since its establishment to
restore buffalo to Indian Reservation lands to revive and protect the
sacred relationship between buffalo and Indian Tribes. Further, ITBC
has successfully promoted the utilization of a culturally significant
resource for viable economic development.
ITBC has assisted Tribes with the creation of new jobs, on-the-job
training and job growth in the buffalo industry resulting in the
generation of new money for tribal economies. ITBC is also actively
developing strategies for marketing Tribally owned buffalo. Finally,
and most critically for Tribal populations, ITBC is developing a
preventive health care initiative to utilize buffalo meat as a healthy
addition to Tribal family diets to reduce the incidence of diet-related
illnesses.
ITBC strongly urges you to support its request for a $2,000,000
earmark to the Department of Health and Human Service Department's
budget to develop the critically needed preventative health care
initiative utilizing Tribally produced buffalo.
______
Prepared Statement of the Lummi Indian Nation
WHO WE ARE
The Lummi Nation is a party to the Point Elliot Treaty of 1855.
Under this Treaty we understand that the Lummi Nation has secured the
protection of the United States of America and has reserved the right
to govern our own lands, people and the people who enter these lands
voluntarily. The Lummi Nation is a federally recognized Indian tribal
government located in what is now called the State of Washington. The
Lummi Nation includes a population of nearly 5,000 people. The Lummi
Nation land base includes over 12,500 upland acres and 5,000 acres of
tidelands. The Lummis are a fishing people with fishing rights in the
San Juan Islands and much of Puget Sound and its associated waterways
extending for hundreds of miles.
Self-governing Status
The Lummi Nation is one of the first self-governance Tribes.
Although many thought the Lummi Nation was seeking to establish a new
relationship with the Federal government, it was really seeking to re-
establish the relationship that it started in 1855; to affirm the
government-to-government relationship that began back then and reshape
it into a relationship that fits today's realities, needs and goals.
Each generation must continue the unbroken promise to take
responsibility for the welfare of our people that began in the past and
extends into the future.
Health Disparities Index
Over the past several years there has been growing concern over the
disparities in Health care funding that is available to disadvantaged
populations within the United States. Unfortunately this concern has
not generated additional funding for health care services. Instead the
information that there are substantial and verifiable disparities in
the level of funding provided to minority population. New funding has
been appropriated to study the problem and to make recommendations that
will most likely include a recommendation for additional service
funding.
U.S. Civil Rights Commission Report
The Civil Rights Report ``A Quiet Crisis'' was issued last year. In
this report, the federal government provides a devastating indictment
of the level of funding for Indian Country. This situation did not
occur during the current administration, nor did it occur during the
previous administration. This is not about politics. It is about human
beings.
INDIAN HEALTH CARE IMPROVEMENT ACT
The Lummi Nation wants the Congress and the Department to support
that section of the proposed Indian Health Care Improvement Act which
enables tribes to not only participate but to operate Medicaid Program
services consistent with the need for health care service needs of
their people. This proposal is budget neutral. These costs are already
included in the current expenditure. This is simply re-routing a
existing expenditures through the Tribal governments, which are closest
to the people who are being served. This proposal enables Tribal
governments to develop their own Medicaid Services plans instead of
simply participating in the State's plan.
HEAD START BUREAU--NEW HEAD START FACILITY
The Lummi Nation is proud to have operated a Head Start Program
since 1969. Our Head State Program now serves one hundred and eighteen
children (118) and their families. However, the Lummi Nation Head Start
Program needs to serve over two hundred (200). The limitations of the
existing facility have limited the expansion of the program and its
badly needed services. The Lummi Nation has completed construction of a
new school facility with Bureau of Indian Affairs funding. In the
process of constructing this facility the Lummi Nation planned for the
construction of a new Head Start Facility adjacent to the new School
Facility. Water, sewer and electrical services have been stubbed out to
the site, thereby reducing the cost of constructing the facility. The
first phase of construction will cost approximately $500,000.
ADMINISTRATION FOR CHILDREN AND FAMILIES
Tribal Social Services Demonstration Projects
ACF staff have informed Tribal Leadership the Department was
considering a demonstration project to provide Tribes with direct
access to Title IV (b) and Title IV (e) Social Services and Foster Care
Services. The Lummi Nation supports the idea of a demonstration project
and would eagerly participate in such a project. The Lummi Nation would
support legislation that enables tribal governments to work directly
with DHHS to access funding for Title IV (b), (c), (d), and (e) while
maintaining their service relationship with the State services for the
benefit of all Indian children.
Unemployment and Poverty
The Lummi Nation approaches the problems of poverty and welfare
through its own experience. The Lummi Nation economy is unique. It had
remained a traditional fishing economy in the 21st century. The
strength of the annual salmon runs had supported the Lummi Nation
economy since time immemorial. However, these runs have finally
succumbed to combination of farm fish competition, over-fishing and
disappearing habitat.
Increasing Welfare Case Load
The experience of the Lummi Nation is that TANF caseloads are
increasing not decreasing. Due to the failure of the last 5 years
fishing seasons the Lummi Nation fishers are being added into the
existing welfare base case loads for the TANF and BIA General
Assistance Programs. Each Lummi fisher person supports an additional
four to five families that worked on their boat and received a share of
the total income. These fishing boats have reduced by 53 percent from
700 to 373. What community in the United States could sustain this
level of economic disaster? For the Lummi Nation this is the bankruptcy
of nearly all its small businesses owners/operators within a short
period of time.
Funding for Tribes to Build Social Services/TANF Infrastructure
The existing TANF funding for Tribes fails to recognize the long-
term investment in the development of the State Welfare infrastructure.
Therefore, Tribes are presented a less than level playing field when
they seek to develop and implement welfare service programs that meet
the needs of their people. The Lummi Nation urges the Committee to
consider earmarking a portion of the funding provided to States for
their administrative costs to support the development of Tribal TANF
infrastructure. This funding should be provided directly to Tribes who
have assumed the responsibility for operating TANF.
SUBSTANCE ABUSE AND MENTAL HEALTH SERVICES ADMINISTRATION
Tribal Substance Abuse Block Grant
The Lummi Nation has been able to have several meeting with the
senior management of the Substance Abuse and Mental Health Services
Administration over the past year. During one of these meeting we
suggested that they re-program just one year's increase in the funding
that is available to ``States under the Substance Abuse Block Grant
funding. Currently only the Red Lake Ban of Chippewa is receiving an
allocation directly from the Substance Abuse Block Grant administered
by the Substance Abuse and Mental Health Services Administration. The
Tribal specific Block Grant Program could be started using only the
increases that are appropriated for the general population re-
programmed as a Tribal only Substance Abuse Block Grant. Then Congress
would subsequently appropriate enough funds for annual inflationary
increases for both the State Block Grant and the Tribal Block Grant.
Alcohol and Substance Abuse Program Infrastructure Funding
SAMHSA has been able to support the development of State Alcohol
and Substance abuse program infrastructure. While Tribal governments
face the same data challenges that are posed by the operation of the
Alcohol and Substance Abuse Treatment, Prevention and After-care
activities. Apparently tribal governments can achieve what State
governments who have access to tax bases of their own, cannot do
without Federal assistance.
DEPARTMENT OF LABOR
Jobs Now--Job Creation and Economic Development
In response to the economic fishing disaster for the Lummi people,
of past 5 years, the Lummi Nation has created the JOBS NOW Initiative
and is in the process of developing a long-term economic stimulus plan.
These initiatives utilize all of the Lummi Nation projects, services,
and resources to address the internal, social and economic needs of
Lummi Nation families. Through this initiative the Lummi Nation has
been able to register its membership in a job skills bank and
identified area of job training that are in demand by the local labor
market and consistent with the employment preferences of the
membership.
Lummi Nation Families Ned 500 Jobs to Replace Lost Fishing Industry
Jobs
The goal of the Lummi Nation Salmon Recovery Initiative is to
create 500 jobs that provide a family wage to confront the current and
long-term effects of the fishing economic disaster that is facing Lummi
Nation members. Therefore the Lummi Nation urges the Committee to
support additional job training program funding earmarked to address
the economic crisis that is facing the members of the Lummi Nation.
Lummi Nation Dislocated Fishers Project
The Lummi Nation is fully aware of how different, how culturally
specific this economic dislocation is. The Lummi Nation expects the
federal government including the Department of Labor to recognize the
unique relationship that exits between the Lummi Nation and the United
States of America through the Point Elliot Treaty of 1855.
The Lummi Nation anticipated that it would be afforded the full
discretion allowed under the law. Instead we believe that we have been
held hostage to the past experiences of the Dislocated Worker Program.
Past practices are not useful guides to new situations. We are
disappointed with the reaction of the Department of Labor to the needs
of our community members. The situation at Lummi Nation is a real
economic dislocation, not just a profit dislocation. This is not a
company failure. This is not simply a mater of mismanagement and plant
failure. We are not working with workers but with small businessmen who
were previously successfully self-employed. The service models that are
imposed by the Department of Labor are based on the plant failure
model.
It is clear that the intent of the legislation is to assist workers
to get jobs when the industry that supported them is no longer
operable. Our situation is clearly within the intent of the authorizing
legislation. The fishing industry to which our people have devoted
their lives and invested their fortune has changed, due to no action or
inaction on the part of the workers for whom assistance is sought.
Negotiated Standard
During negotiations with the Department of Labor the Lummi Nation
sought and received a promise that funding would be available to meet
the needs of all eligible members of the Lummi Nation. The Lummi Nation
expects the Department to honor this standard and continue funding of
this project until all eligible Lummi Nation members have been provided
services such that they are able to secure and maintain comparable
permanent employment.
+$420,000.--Additional funding for Lummi Nation WIA Programs and
Services
The Lummi Nation allocation for funding under the WIA Comprehensive
and Youth Programs is less than one third of what it needs to be. The
Lummi Nation is requesting that the Committee review its allocations
and increase the funding that is available to the Lummi Nation by three
(3) times. The Lummi Nation receives $140,000 annually to meet the
needs of 5,000 people, with multiple needs including basic reading and
writing skills, physical therapy, other personal issues to address
prior to job training and eventually employment. The Lummi Nation needs
an allocation of $420,000.
DEPARTMENT OF EDUCATION
Funding for Tribal Education Departments
This is needed by all of Indian Country. Those tribes that do not
operate their own schools need the infrastructure to support their
youth in the public schools. Those Tribes that do operate schools need
the Department format to insure that educational services are connected
to the Tribal government.
No Child Left behind
The United States of America has left behind Indian children,.
While we are supportive of many provision of the Act we are not aware
of any benefits that it has brought to us. Indian children are still
left behind by the lack of adequate school and preschool facilities,
teachers and operating resources. While the 2006 Presidents budget
Request does includes requests to maintain the 2004 funding level it is
woefully inadequate. The leading cause of death in our community is
abuse of alcohol and/or drugs. Children who live in such a community
have significant social, developmental needs that must be addressed so
that basic educational services can be of any value. The current
funding level mean that Indian Children will continue to be left behind
as the rest of America is catapulted into the 21st Century.
Vocational Rehabilitation
The Lummi Nation is a long-standing grantee of the Department's
Indian Vocational Rehabilitation. We are grateful for the support of
the Department for the development of the Lummi Nation Vocational
Rehabilitation Program as well as the funding to provide mush needed
services for our membership. The Department needs to insure that the
full amount of this allocation is available for the benefit of Indian
people.
477 Program
The Lummi Nation along with other who are participating in the 477
Program are seeking to consolidate all employment and training
programs, services functions and activities. The Education Department
needs to fully participate in this program. The Lummi Nation urges the
Committee to require the Department to meet with Tribal leadership and
members of the Committee staff to identify the barriers to full
participation and develop appropriate administrative and or legislative
remedies.
______
Prepared Statement of the National Association of County and City
Health Officials
SUMMARY
The proposed cuts in the fiscal year 2006 budget of the Centers for
Disease Control and Prevention (CDC) fall disproportionately on local
and state public health departments. The two largest proposed program
cuts for CDC are a reduction of $130 million in funding for state and
local bioterrorism preparedness and elimination of the $131 million
Preventive Health and Health Services block grant program. Such funding
cuts would seriously compromise the ability of the nation's
governmental public health system to fulfill its mission of protecting
and promoting health.
Local public health departments work every day on the front lines
to combat threats to the health of their communities. They can ill
afford substantial reductions in federal support for their roles as
first responders to bioterrorism and other public health emergencies.
Moreover, local public health departments receive about 40 percent of
the Preventive Health and Health Services block grant (PHHS) funds.
These enable them to carry out programs ranging from prevention of
heart attack and stroke to combating West Nile virus. In states where
local health departments rely on these funds to run prevention programs
for which no other sources of funding are available, activities to
reduce the burdens of preventable disease will be reduced.
At a time when the nation is engaged in urgent work to protect the
homeland from terrorists, as well as to stop an epidemic of obesity, it
is profoundly counterproductive and irrational to reduce support for
local programs that are the first line of defense against the greatest
threats to the health of communities. NACCHO urges Congress to continue
funding these two CDC programs at levels no less than that of the
current fiscal year. Those levels are $932 million for state and local
bioterrorism preparedness and $131 million for the Preventive Health
and Health Services block grant.
STRENGTHENING THE GOVERNMENTAL PUBLIC HEALTH SYSTEM TO IMPROVE HOMELAND
SECURITY REQUIRES SUSTAINED FUNDING
Congress recognized in 1997 an unmet need to strengthen the
nation's capacity to respond to an act of bioterrorism and initiated
funding for bioterrorism preparedness in fiscal year 1999. The initial
funding of about $121 million (which included $51 million solely for
stockpiling medications) assisted CDC and state and local health
departments to begin examining what plans and resources were necessary.
After 9/11 and the anthrax outbreaks in the fall of 2001, Congress
increased bioterrorism funding markedly and included $940 million for
building state and local capacities, of which about $870 million was
actually made available to states and localities. The Department of
Health and Human Services got these funds out to states and three large
cities via cooperative agreements very promptly, far ahead of other
homeland security funds for states and localities.
Substantial bioterrorism preparedness funds for improving all
aspects of preparedness have actually been in the hands of state health
departments since August 2002, less than three years. Local public
health departments, many of which have been funded for much less time,
are justifiably proud of the progress they have made.
Extensive response plans, developed in collaboration with local
emergency management systems, have been made. Numerous ``tabletop'' and
real field exercises have tested local capabilities. Mass vaccination
clinics have taken place, some in conjunction with the actual
requirement to provide smallpox vaccine to selected first responders,
others as a real response to this year's flu vaccine shortage.
Communications systems and equipment that enable rapid electronic
information exchange among health departments and by health departments
to their communities are operational. Improved systems for disease
detection are in place.
Local health departments have engaged hospitals, physicians, and
other individuals and organizations in the private sector in developing
their roles in responding to a serious disease outbreak. Complex
logistical arrangements needed to distribute medications or equipment
from the Strategic National Stockpile to stricken populations have been
developed.
In some locations, genuine public health crises, such as suspected
SARS cases or flu vaccine shortages, have demanded a response. In the
act of the responding, local health departments and their community
partners continually identify new challenges and new ways to improve
their ability to respond. Improving a locality's ability to detect a
disease outbreak promptly and to contain it swiftly is a continuous
process. Interrupting that process through funding cuts would take the
nation's bioterrorism preparedness backwards, not forward. New
capacities that are now in place cannot be sustained without sustained
funding.
The Administration has proposed to fund more medicines and supplies
for the Strategic National Stockpile and to purchase portable medical
treatment units, instead of sustaining funding for state and local
capacities. Yet the acquisition of vaccines or equipment is useless
unless there are trained people and established systems in place to get
the vaccines or treatment to stricken populations. According to a
recent report by the Government Accountability Office (``Bioterrorism:
Information on Jurisdictions' Expenditure and Reported Obligation of
Program Funds,'' February 2005), state and local governments are taking
action responsibly to prepare for bioterrorism and there are not large
surpluses of unspent funds. It is wholly irrational to suggest that
more vaccines and supplies can improve national preparedness, if
funding to sustain health departments' capacity to use those vaccines
and supplies is simultaneously cut back.
The nation has a long way to go before every citizen enjoys the
best possible protection by disease detection and response systems that
work as quickly as humanly possible. Providing this protection is the
job of the governmental public health system. No other entity can do
it. NACCHO urges Congress not to cut back funds available to local
public health departments, the nation's first responders to
bioterrorism.
THE PHHS BLOCK GRANT IS A LINCHPIN FOR PREVENTION
Local public health departments receive approximately 40 percent of
the Preventive Health and Health Services block grants nationally. The
proportion varies among states from less than 5 percent to almost 100
percent. The block grant funds fulfill three critical purposes. First,
they enable states to address critical unmet public health needs. The
coexistence of other federal categorical public health funds does not
mean that available categorical funds are sufficient or available to
address all problems. They are not. Improving chronic disease
prevention through screening programs and programs that promote healthy
nutrition and physical activity are prime examples of activities to
which many jurisdictions devote PHHS funds. Forty percent of fiscal
year 2004 block grant funds were spent on chronic disease prevention,
including prevention of obesity, stroke, heart disease, cancer,
diabetes, and dental caries.
Second, PHHS funds provide some flexible funding to address
unexpected problems or problems that are unique to a particular
geographic area. West Nile virus, a fully preventable disease spread to
humans by mosquitoes, is one good example. Third, PHHS fund provide
leverage for more funds and in-kind resources from non-federal sources.
In one southern state, local health departments collectively used $2.77
million in block grant funds to establish new prevention programs and
generate $5 million in additional resources for those programs.
States are fully accountable to the Department of Health and Human
Services for their expenditures of block grant funds and report how
much money they spend by specific program area. In those states where
local health departments receive a significant amount of PHHS funds
from the state, local prevention efforts will diminish. Local and state
health departments are key leaders and providers of population-based
prevention programs. They work to keep prevention in the public eye and
they build on programs that have been proven effective in reducing
disease and preventing premature death. As health care costs escalate,
reducing the nation's commitment to prevention by eliminating the PHHS
block grant and weakening state and local public health departments is
unwise and uneconomic.
The National Association of County and City Health Officials
(NACCHO) is the organization representing the almost 3,000 local public
health departments in the United States.
______
Prepared Statement of the National Association of Foster Grandparent
Program Directors
INTRODUCTION
I am honored to testify in support of fiscal year 2006 funding for
the Foster Grandparent Program (FGP), the oldest and largest of the
three programs known collectively as the National Senior Volunteer
Corps, which are authorized by Title II of the Domestic Volunteer
Service Act (DVSA) of 1973, as amended and administered by the
Corporation for National and Community Service (CNS).
Good morning Mr. Chairman. My name is Brenda Lax and I have been
the Foster Grandparent Program Director with the City of Kansas City,
Missouri for the past 17 years. I am here in my capacity as President
of the National Association of Foster Grandparent Program Directors
(NAFGPD). NAFGPD is a membership-supported professional organization
whose roster includes the majority of more than 350 directors who
administer Foster Grandparent Programs nationwide, as well as local
sponsoring agencies and others who value and support the work of FGP.
This year we will celebrate our 40th Anniversary of engaging low-income
seniors in service to children with special needs with a reception on
September 21, 2005 here in Washington, DC. On behalf of NAFGPD members
across the country, I would like to extend an invitation to you and
your staff to join us for this special occasion.
Mr. Chairman, I would like to begin by thanking you and the
distinguished members of the Subcommittee for your steadfast support of
the Foster Grandparent Program. No matter what the circumstances, this
Subcommittee has always been there to protect the integrity and mission
of our programs. Our volunteers and the children they serve across the
country are the beneficiaries of your commitment to FGP, and for that
we thank you. I also want to acknowledge your outstanding staff for
their tireless work and very difficult job they have to ``make the
numbers fit.''--an increasingly difficult task in this budget
environment.
Last year I had the great privilege of testifying before the House
Subcommittee about the fiscal year 2005 budget request for FGP. While
it was a great honor to be there, I was compelled to deliver some very
disappointing news--a cut of some $3.5 million was proposed for our
programs across the country. Well, Mr. Chairman under your leadership
the Subcommittee not only rejected this misguided cut, but provided an
increase of nearly $2 million over the fiscal year 2004 enacted level.
NAFGPD was very glad to see this ill-conceived cut rejected, and we
believe your action sent a message about our programs--they are alive
and well and quite worthy of scarce federal resources.
Thanks to your action in the fiscal year 2005 appropriations
process, Mr. Chairman, the fiscal year 2006 budget request for FGP does
not suggest another significant cut to our programs. Instead, the
fiscal year 2006 budget provides an increase of $634,000 (.5 percent)
for headquarters-based administrative functions such as training and
technical assistance. While NAFGPD was pleased to see our programs not
slated for a cut, we remain concerned that the Corporation's request
does not provide any new funding where it is needed most--in the field.
All of us recognize the spending constraints placed on the President
and, most importantly on you and the Appropriations Committee, Mr.
Chairman. However, in a time of such scarce federal resources, NAFGPD
believes strongly that any new funding should flow to our programs in
the field where it is most urgently needed, not CNCS headquarters.
NAFGPD respectfully requests the subcommittee to provide $116.440
million for the Foster Grandparent Program in fiscal year 2006, an
increase of $5.016 million over the fiscal year 2005 level. This
critical funding will ensure the continued viability of the Foster
Grandparent Program, and allow for important expansion of this unique
program. Specifically, this proposal would fund a 3 percent cost of
living increase for every Foster Grandparent Program and expansion
grants to existing programs that would add 372 new low-income senior
volunteers to serve children.
FGP: AN OVERVIEW
Established in 1965, the Foster Grandparent Program was the first
federally funded, organized program to engage older volunteers in
significant service to others. From the 20 original programs based
totally in institutions for children with severe mental and physical
disabilities, FGP now comprises nearly 350 programs in every state and
the District of Columbia, Puerto Rico, and the Virgin Islands. All of
these programs are now primarily based in community volunteer sites--
where most special needs children can be found today--and are
administered locally through a non-profit organization or agency and
Advisory Council comprised of community citizens dedicated to FGP and
its mission. FGP represents the best in the federal partnership with
local communities, with federal dollars flowing directly to local
sponsoring agencies, which in turn determine how the funds are used.
There are currently 38,700 Foster Grandparent volunteers who give over
36 million hours annually to more than 277,000 children.
The Foster Grandparent Program is unique for several reasons. We
are one of only two volunteer programs in existence that enable seniors
living on very limited incomes to serve their communities as volunteers
by providing a small non-taxable stipend and other support which allow
volunteers to serve at little or no cost to themselves. Our volunteers
provide intensive, consistent service--15 to 40 hours every week,
usually 4 hours every day. FGP provides intensive pre-service
orientation and at least 48 hours of ongoing training every year to
keep volunteers current and informed on how to work with children who
have special needs. And our volunteers provide one-to-one service to
their assigned children, exactly what is required to help prepare our
nation's neediest children to become self-sufficient adults.
FGP: THE VOLUNTEERS
The Foster Grandparent Program is a versatile, dynamic, and
uniquely multi-purpose program. First, we give Americans 60 years of
age or older who are living on incomes at or less than 125 percent of
the poverty level the opportunity to serve 15 to 40 hours every week
and use the talents, skills and wisdom they have accumulated over a
lifetime to give back to the communities which nurtured them throughout
their lives. Seniors in general are not valued or respected in today's
society, and low-income seniors are particularly devalued because of
their economic status. They are rarely asked by their communities to
contribute through volunteering, because they are not traditionally
those who participate in community activities.
FGP actively seeks out these low-income seniors. We dare to ask
them to serve, to give something back. And we help them to develop the
additional skills they may need to function effectively in settings
unfamiliar to them, like public schools, hospitals, childcare centers,
and juvenile detention facilities. We also provide them with ongoing
training and support throughout their tenure as Foster Grandparents.
Through their service, our older volunteers say they feel and stay
healthier, that they feel needed and productive. Most importantly, they
leave to the next generation a legacy of skills, perspective and
knowledge that has been learned the hard way--through experience.
Within budgetary constraints, FGP is engaging older people who are
not usually asked to serve and those usually considered as needing
services rather than being able to serve: 86 percent are 65 or older
and 45 percent come from various ethnic groups.
FGP: THE CHILDREN
Through our volunteers, the Foster Grandparent Program also
provides person-to-person service to children and youth under the age
of 21 who have special or exceptional needs, many of whom face serious,
often life-threatening challenges. With the changing dynamics in family
life today, many children with disabilities and special needs lack a
consistent, stable adult role model in their lives. The Foster
Grandparent is very often the only person in a child's life who is
there every day, who accepts the child, encourages him no matter how
many mistakes the child makes, and focuses on the child's successes.
Special needs of children served by Foster Grandparents include
AIDS or addiction to crack or other drugs; abuse or neglect; physical,
mental, or learning disabilities; speech, or other sensory
disabilities; incarceration and terminal illness. Of the children
served, 7 percent are abused or neglected, 26 percent have learning
disabilities, and 11 percent have developmental delays. FGP focuses its
resources in areas where they will have the most impact: early
intervention services and literacy activities. Nationally, 85 percent
of the children served by Foster Grandparents are under the age of 12,
with 39 percent of these children age 5 or under. Foster Grandparents
work intensively with these very young children to address their
problems at as early an age as possible, before they enter school.
Nearly one-half of FGP volunteers serve nearly 12 million hours
annually addressing literacy and emergent-literacy problems with
special needs children.
Activities of the FGP volunteers with their assigned children
include teaching parenting skills to teen parents; providing physical
and emotional support to babies abandoned in hospitals; helping
children with developmental, speech, or physical disabilities develop
self-help skills; reinforcing reading and mathematics skills; and
giving guidance and serving as mentors to incarcerated or other youth.
FGP: THE VOLUNTEER SITES
The Foster Grandparent Program provides agencies and organizations
providing services to special-needs children with a consistent,
reliable, invaluable extra pair of hands 15 to 40 hours every week to
assist in providing these services. Seventy-one percent of FGP
volunteers serve in public and private schools as well as sites that
provide early childhood pre-literacy services to very young children,
including Head Start.
FGP: COST-EFFECTIVE SERVICE
The Foster Grandparent Program serves local communities in a high
quality, efficient and cost-effective manner, saving local communities
money by helping our older volunteers stay independent and healthy and
out of expensive in-home or institutional care. Using the Independent
Sector's 2003 valuation for one hour of volunteer service ($17.19/
hour), the value of the service given by Foster Grandparents annually
is over $618 million, and represents a 5-fold return on the federal
dollars invested in FGP. The annual federal cost for one Foster
Grandparent is $3,800--less than $4.00 per hour.
The value local communities place on FGP and its multifaceted
services is evidenced by the large amount of cash and in-kind donations
contributed by communities to support FGP. For example, FGP's fiscal
year 2001 federal allocation was matched with $40 million in non-
federal donations from states and local communities in which Foster
Grandparents volunteer. This represents a non-federal match of 42
percent, or $.42 for every $1.00 in federal funds invested--well over
the 10 percent local match required by law.
NAFGPD'S FISCAL YEAR 2006 BUDGET REQUEST
Given the dramatically expanding number of low-income seniors
eligible to serve and the staggering number of troubled and challenged
children in America today, we respectfully request that the
Subcommittee provide $116.440 million for the Foster Grandparent
Program in fiscal year 2006, an increase of $5.016 million over fiscal
year 2005. This critical funding will ensure the continued viability of
the Foster Grandparent program, and allow for an expansion of this
important program.
The requested increase would be allocated for the following
purposes, in order of priority:
1st.--Award an administrative cost increase of 3 percent to each
existing Foster Grandparent Program in order to maintain quality,
enable recruitment and sustain the important work already being done by
programs.
2nd.--In accordance with the Domestic Volunteer Service Act (DVSA),
designate one-third of the increase over the fiscal year 2005 level to
fund Program of National Significance (PNS) expansion grants to allow
existing FGP programs to expand the number of volunteers serving in
areas of critical need as identified by Congress in the DVSA.
This funding proposal will generate opportunities for approximately
372 new low-income senior volunteers contributing in excess of 400,000
hours of service annually to more than 2,000 additional children.
The message is clear: (1) the population of low-income seniors
available to volunteer 15 to 40 hours every week is increasing; (2)
communities need and want more Foster Grandparent volunteers and more
Foster Grandparent Programs. FGP respectfully requests increased
funding that will address our most pressing need: a 3 percent
administrative cost increase that will enable the program to expand its
reach across the nation. The Subcommittee's continued investment in FGP
now will pay off in savings realized later, as more seniors stay
healthy and independent through volunteer service, as communities save
tax dollars, and as children with special needs are helped to become
contributing members of society.
Mr. Chairman, in closing I would like to again thank you for the
subcommittee's support and leadership for FGP over the years. NAFGPD
takes great comfort in knowing you and your colleagues in Congress
appreciate what our low-income senior volunteers accomplish every day
in communities across the country.
______
Prepared Statement of the National League for Nursing
The National League for Nursing (NLN)--representing more than 1,200
nursing schools and health care agencies, some 18,000 individual
members composed of nurses, educators, administrators, public members,
and 18 constituent leagues--appreciates the Subcommittee's past support
for nursing education and your continued recognition of the important
role nurses play in the delivery of health care services. We are
concerned, however, that the advancements made by Congress to help
alleviate the nursing shortage will be lost during the fiscal year 2006
appropriations process unless additional resources are expended. NLN
urges your continued support for Title VIII--Nursing Workforce
Development Programs by ensuring that these programs are funded at a
minimum level of $210 million for fiscal year 2006. To put this funding
request into perspective, in 1974, during the last serious nursing
shortage, Congress appropriated $153 million for nurse education
programs. In today's dollars that would equate to $592 million,
approximately four times what the federal government is spending now.
Today's nursing shortage is very real and very different from any
experienced in the past. The current shortage is evidenced by an aging
workforce and an inadequate number of people entering the profession.
Schools of nursing are suffering from a continuing and growing shortage
of faculty, which prevents these institutions from admitting many
qualified students who are applying to their programs. A recent NLN
survey of nursing programs at all levels shows that an estimated
125,000 qualified applicants were turned away from nursing programs for
the academic year 2003-2004 because of the severe faculty shortage. The
supply of appropriately prepared nurses and nursing faculty is
inadequate to meet the needs of a diverse, aging population, and this
shortfall will grow more serious over the next 5 years.
Congress did an admirable job of passing the Nurse Reinvestment Act
in 2002. The new monies used to fund loans and scholarships are
appreciated. However, it has become abundantly clear that significantly
more funding is required to even minimally meet the existing need.
NLN's Faculty Survey conducted in 2002 concludes that not enough
qualified nurse educators exist to teach the number of nurses needed to
ameliorate the nursing shortage. Subsequent information indicates that
this situation is getting more serious and is not expected to improve
in the near future, since an inadequate number of nurse educators are
currently in the education pipeline.
The NLN Survey found three trends influencing the future of nursing
education over the next decade:
--The aging of the nurse faculty population.--An average of 1.3 full-
time faculty members per program left their positions in
nursing education in 2002. About half the Survey respondents
had at least one unfilled budgeted full-time faculty position
and some have as many as 15 such positions. 36.5 percent of
faculty who left their positions in the preceding year did so
because of retirement; 8.6 percent of faculty were 61 years of
age or older; and 75 percent of the current faculty population
is expected to retire by 2019.
Approximately 1,800 full-time faculty members leave their
positions each year. About 10,000 master's level nurses
graduate per year, 15 percent of whom would have to go into
teaching just to maintain the status quo. Since this is highly
unlikely, the gap between unfilled positions and the candidate
pool will widen significantly.
--The increasing number of part-time faculty.--The number of part-
time faculty ha increased notably since 1996--nearly 17 percent
in baccalaureate programs and 14 percent in associate degree
programs. Part-time faculty now provides approximately 23
percent of the estimated number of faculty FTEs.
Part time employees are often not an integral part of the design,
implementation, and evaluation of the overall nursing education
program. Many may hold other positions that often limit their
availability to students. Further, many part-time faculty have
not been prepared for the faculty role.
--The large number of nursing faculty who are not prepared at the
doctoral level.--Approximately half the full-time faculty in
baccalaureate and higher degree programs hold a doctoral
degree. In associate degree programs, doctorally prepared
faculty account for only 6.6 percent of the total faculty and
the number is slightly more than 5 percent in diploma programs.
Only 350 to 400 nursing students receive doctoral degrees each
year and the pool of doctorally prepared candidates for full-
time nursing professorships is very limited.
Educators without doctoral degrees may lack credibility within a
university setting and have limited opportunities to assume
leadership positions. Institutions with low numbers of
doctorally prepared educators may be less likely to get funds
to support research or educational innovations.
As important as educational incentives are for future practicing
nurses, the scholarships for doctoral students who will instruct the
next generation of nurses are even more critical. Please do not allow
us to lose ground in the fight against the nursing shortage. Fund Title
VIII--Nursing Workforce Development Programs at a level commensurate
with the severity of the health care crisis facing the nation today.
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 in this country who will need our care. If you have any questions
about NLN's position or we can be of further assistance to you, please
feel free to contact Kathleen Ream, NLN Manager of Government Affairs,
at 703-241-3974.
______
Prepared Statement of the National Mental Health Association
Thank you for this opportunity to submit testimony to the
Subcommittee and to address the important issue of mental health. The
National Mental Health Association (NMHA), the country's oldest and
largest advocacy organization addressing all aspects of mental health
and mental illness, represents over 340 affiliates throughout the
country. NMHA is uniquely positioned to speak to the entire mental
health and substance abuse portfolio including prevention, early
intervention, treatment, and research.
NMHA would like to thank Chairman Regula and Reps. Obey and Kennedy
for your leadership and for your strong support in winning increases
last year for mental health programs. However, we are deeply troubled
by the Administration's current proposal to cut mental health services
at the Center for Mental Health Services (CMHS) by a dangerous 7
percent (from $901 to $837 million) and to increase funding for the
National Institutes of Health (NIH) by less than 1 percent. We hope to
highlight the tremendous need for mental health services in communities
throughout the country and why it is imperative that we make an
investment not cuts in mental health.
CALL TO MAKE MENTAL HEALTH A NATIONAL PRIORITY
NMHA strongly urges you to make mental health a national priority.
In creating the Commission on Mental Health, President Bush
emphatically declared that ``Our country must make a commitment:
Americans with mental illness deserve our understanding, and they
deserve excellent care. I look forward to . . . fixing the [mental
health] system, so that Americans do not fall through the cracks.''
These are not cracks; these are, at this time, unbridgeable chasms.
As we know and as corroborated in a December 2004 New York Times
editorial, the robust community-based mental health system that
national leaders envisioned would replace the country's reliance on
warehoused institutional care never materialized. As a result, an
astounding 80 percent of children entering the juvenile justice system
have mental disorders, and prisons and jails have become de facto
mental hospitals, but without the treatment that would allow
individuals with a mental illness to control their symptoms and
organize their lives.
The President's New Freedom Commission on Mental Health, the first
such commission in over 25 years, recommended a fundamental
transformation of the Nation's approach to mental health care. This
transformation must ensure that mental health services and supports
actively facilitate recovery, and build resilience to face life's
challenges--with consumers active participants in designing and
developing their plans of care. The Commission also found that our
nation's failure to make mental health a priority is a national
tragedy. A measure of the scope of that tragedy is the
disproportionately high number of individuals with mental illness in
the corrections system as well as over 30,000 lives lost annually to
suicide--a loss, the Commission states, that is largely preventable.
UNTENABLE FISCAL YEAR 2006 MENTAL HEALTH BUDGET CUTS
Although mental illness (the chronic disease of the young) ranks
first in the United States in terms of causing disability, the proposed
fiscal year 2006 budget for the Center for Mental Health Services at
SAMHSA would shrink funding for the federal government's lead mental
health agency to virtually the level of support provided the agency for
fiscal year 2002. Cutting a mental heath budget to fiscal year 2002
levels at a time that more than 67 percent of adults and nearly 80
percent of children who need mental health services do not receive
treatment is hardly a formula for making mental health a national
priority.
NMHA strongly urges the Subcommittee to reverse the proposed 7
percent cut or loss of nearly $70 million to mental health services at
the Center for Mental Health Services (CMHS).
In particular, we urge you to reverse the following proposals in
the Administration's budget for the Substance Abuse and Mental Health
Services Administration:
--The proposed cut in funding for a successful youth-violence
prevention program by nearly a third, from $94 to $67 million;
--The proposed cut in funding for jail diversion program by nearly 50
percent, from $7 to $4 million;
--The proposed cut in funding of an additional $40 million in CMHS'
important Programs of Regional and National Significance
account--in essence slashing funding from an account aimed at
much needed priority programming; and
--The proposed cut in funding for substance abuse prevention by 7
percent, from $198 to $184 million.
In addition, we urge you to build on the Administration's proposal
to:
--Level fund critical youth suicide-prevention efforts, the
children's systems-of-care, the homelessness (PATH), PAIMI and
elderly programs, the mental health and substance abuse block
grants, as well as the Consumer TA Centers; and
--Provide an increase of only 0.4 percent, on average, for research
activities at the National Institutes of Mental Health, Drug
Abuse, and Alcohol Abuse and Alcoholism.
Lastly, we support the Administration's $6 million increase request
for the State Infrastructure Grants, which will likely fund 11 grants
with the proposed new total of $26 million, to assist States with
planning and implementing the Commission's call for transformation of
state mental health services across multiple service systems.
YOUTH VIOLENCE PREVENTION: A WHOLLY UNWARRANTED BUDGET CUT
Recent tragic events illustrate what we believe are critical
failures in priority-setting in the SAMHSA budget. This month's
horrible shootings at Minnesota's Red Lake High School, the most
violent school slaying since Columbine, is a reminder that youth
violence is still prevalent and underscores the need for every school
house to be prepared to deal with traumatic, tragic events. Surely this
incident is emblematic of the shortsightedness of the Administration's
proposed devastating cut of nearly 33 percent or $27 million to youth
violence prevention--the Safe Schools/Healthy Students (SS/HS)
program--at CMHS.
As CMHS' major school violence prevention program, the SS/HS
initiative addresses school violence prevention through a wide range of
early childhood development, early intervention and prevention, suicide
prevention, and mental health treatment services. The primary objective
of this grant program is to promote healthy development, foster
resilience in the face of adversity, and prevent violence. The
President's Commission report highlighted the need for the mental
health system to coordinate better with other federal agencies. This
landmark program, administered jointly with the Department of Education
(Safe and Drug Free Schools Office) and the Department of Justice
(Office of Juvenile Justice and Delinquency Prevention), does just
that.
The Red Lake School shooting and other such shootings underscore
the tremendous mental health needs of young people that too often go
unmet. One in ten children suffers from a mental disorder severe enough
to cause some level of impairment. Even more children experience
psychiatric trauma, or emotional harm, which is essentially a normal
response to an extreme event that may or may not happen with some
regularity.
This Subcommittee should make investments not only in the area of
youth violence prevention, but also invest in Jail Diversion programs
designed to keep young people at home and in their communities as they
get care. This is not the time to cut funding for programs that help to
protect our nation's youth.
LACK OF COMMUNITY MENTAL HEALTH SERVICES
While we call on the Subcommittee to reverse the alarming cuts
proposed in the SAMHSA budget, we urge that the Subcommittee also
provide needed increases in funding. To illustrate the magnitude of
needs that plead for attention, we urge that you take steps to address
the shocking findings highlighted by Sen. Susan Collins (R-ME) whose
hearing last year spotlighted the devastating reality that, every day,
about 2,000 children and adolescents are warehoused in juvenile
detention centers around the country simply because community mental
health services are unavailable. An estimated $100 million of
taxpayers' money is spent on the detention of these youth awaiting
community mental health services. Shouldn't that $100 million and other
precious resources be invested in the community rather than in the
corrections system to provide cost-effective, quality mental health
services? Consider the outrage that would be heard if 2,000 young
people with ANY other illness not only went without treatment, but were
involuntarily institutionalized as well.
NMHA agrees with Senator Collins that ``another consequence of our
tattered `safety net' for children with mental illness [is] the
inappropriate use of juvenile detention centers as `holding areas' for
young people who are waiting for mental health services. Like custody
relinquishment [of children with mental disorders], these inappropriate
detentions are a regrettable symptom of a much larger problem, the lack
of available, affordable, and appropriate mental health services and
support systems.''
With this tragic situation in mind, we urge you to consider, for
example, a greater investment in the Children's Mental Health Services
program that would allow CMHS to expand beyond the 92 grants in 46
States that have provided services to approximately 54,343 children
from 1993-2004. This program, which scored highly in the OMB PART
review/evaluation, has only served children in 274 or 9 percent of the
3,142 counties in the United States.
NEEDS ARE INCREASING, AND APPROACHING A MENTAL HEALTH STATE OF
EMERGENCY
The need for mental health services is ever-escalating for both
young people and adults, and gaining ever-wider recognition. To
illustrate, a February 2005 study found that U.S. hospital emergency
departments greatly under-diagnose psychiatric disorders. Investigators
from Louisiana State University examined records of more than 33,000
patients and discovered an overall psychiatric disorder rate among
patients of 5.27 percent--far below the national rate of 20 percent to
28 percent. The researchers believe this points to large numbers of
missed diagnoses. Last July a county in Nevada declared a ``State of
Emergency'' after many individuals with mental illness overcrowded the
state's hospitals. In Nebraska, the state last February reported its
mental health system to be in crisis. And with the fifth-highest
suicide rate in the nation, West Virginia's Gazette-Mail concluded
earlier this year that the state is in the midst of a ``mental health
crisis.''
Broad societal mental health needs too often go unrecognized. As
the nation grapples with an obesity epidemic, for example, there has
been insufficient recognition of the link to mental health. Yet mental
health issues are often closely intertwined with other chronic illness.
In the case of obesity, for example, we can expect individuals who
suffer from obesity to be at risk for heart disease. Two decades of
NIMH research have shown that people with heart disease are more likely
to suffer from depression than otherwise healthy people, and
conversely, that people with depression are at greater risk for
developing heart disease. With sharp cutbacks in the already modest
(PRNS) funding available to the Center for Mental Health Services to
address priority needs, any opportunity that might exist to address
such co-morbidities appears futile. Yet such a focus could pave the way
for the one in three people who have survived a heart attack and
experience major depression in a given year to improve their overall
health and lessen the fiscal burden on the nation's health care system.
RETURNING SOLDIERS
It has been reported that through the end of September 2004, nearly
900 troops had been evacuated from Iraq by the Army for psychiatric
reasons, included attempts or threatened attempts at suicide. And a
study of members of combat infantry units deployed to Iraq in 2003
published in the New England Journal of Medicine (July 1, 2004),
researchers found evidence of major depression, anxiety, or PTSD after
combat duty in approximately one of every six of these troops. Dr.
Stephen C. Joseph, an assistant secretary of defense for health affairs
from 1994 to 1997, declared that ``the mental health consequences are
going to be the medical story of [the Iraqi] war.'' We should not
assume, however, that those bearing the psychic scars of this war will
necessarily seek treatment from the Defense Department or the
Department of Veterans Affairs. The study in New England Journal was
particularly troubling in that regard in finding that most veterans who
appeared to have combat-related mental health problems avoided seeking
the treatment available in the military, due principally to stigma.
That finding suggests that for many veterans war-related mental health
problems may go unaddressed for a period of time. In many instances, an
already overburdened public mental health system may be called on to
meet their needs.
At a minimum, this problem calls for a robust, multi-pronged
campaign to renew and more fiercely combat the enormous stigma in key
sectors of American society, such as among service-members. Where
stigma and misperceptions regarding mental health problems fuel
resistance to early intervention, one can foresee that these problems
will simply persist and worsen. Yet with a sharply diminished budget,
it is highly unlikely that SAMHSA could even consider a new anti-stigma
effort.
SUICIDE
Yet another very troubling dimension of the SAMHSA budget is its
``status quo'' approach to public health crisis. Both the Institute of
Medicine and the President's New Freedom Commission on Mental Health
have highlighted that mental illness plays a major role in the over
650,000 attempted suicides in America every year--30,000 suicides are
completed. Almost twice as many individuals die from suicide than
homicide yet hundreds of millions are spent on law enforcement and
corrections facilities to prevent and protect Americans from homicides
while suicide prevention funding under the proposed CMHS budget would
be held to a mere $16.5 million. We urge the Subcommittee to heed this
disparity and bring funding for suicide prevention efforts more closely
in line with the scope of this public health crisis.
The tragedy that befell Sen. Gordon Smith and his family when his
son took his life did shine a spotlight on this unspeakable crisis.
Last year, Congress enacted the Garrett Lee Smith Memorial Act to: (a)
support the planning, implementation, and evaluation of organized
activities involving statewide youth suicide intervention and
prevention strategies; (b) authorize grants to institutions of higher
education to reduce student mental and behavioral health problems; and
(c) authorize funding for the national suicide prevention resource
center. The program will provide early intervention and assessment
services, including screening programs, to youth who are at risk for
mental or emotional disorders that may lead to a suicide attempt, and
that are integrated with school systems, educational institutions,
juvenile justice systems, substance abuse programs, mental health
programs, foster care systems, and other child and youth support
organizations.
Suicide is a problem of enormous scope and demands a response
commensurate with its enormity. The truly tragic aspect to suicide is
how largely preventable this crisis is. It is not just young people at
risk of suicide deaths, older Americans are also at great risk. We urge
the Subcommittee to increase both youth-suicide prevention funding and
support for the Elderly program at CMHS to deal with suicide and other
issues endemic to an aging population.
CLOSING
Shrinking CMHS program funding to fiscal year 2002 dollar levels is
a very troubling response to a landmark Presidential commission's call
to make mental health a national priority. But a budget decline of this
magnitude would have concrete implications in communities across this
country. It would, for example, mean closing the door to states and
communities that badly need help to improve mental health service-
delivery. It would mean no help to anguished school systems that are
struggling to achieve the twin goals of school-safety and healthy-
students in the face of the threat of more Columbines and Red Lakes. It
would mean despair for young people languishing in juvenile detention
facilities across the country while they wait for community mental
health treatment and families forced to relinquish custody of their
children to secure desperately needed mental health services.
Without a seismic shift in the level of priority the Federal
government gives to mental health, and a corresponding investment in
research, supports and services, we can expect to see a
disproportionate numbers of individuals with mental illness who attempt
and complete suicide or languish in corrections facilities.
By making mental health a more robust funding priority, this
Subcommittee could dramatically change the lives of millions of
Americans, improving not only their well-being but our nation's
productivity. And by investing in early intervention services and in an
array of other mental health services and supports, precious resources
at the state and federal level would be saved by stemming the flow of
resources being spent in corrections or other systems that deliver
mental health services that are not as cost-effective and at a lower
quality than providing those services in the community.
______
Prepared Statement of the National Nursing Centers Consortium
The NNCC (National Nursing Centers Consortium) appreciates the
opportunity to submit written comments for the record regarding funding
for nursing workforce and research programs in fiscal year 2006. This
testimony does not include a monetary request. Instead, the NNCC
requests that this subcommittee support the creation of a new grant
program under the jurisdiction of the Health Resources and Services
Administration's (HRSA's) Bureau of Health Professions (BHPr) that
would enable the Centers for Medicare and Medicaid Services (CMS) to
issue nurse-managed health centers (NMHCs) prospective payment
reimbursement for their Medicare and Medicaid patients.
NNCC BACKGROUND
The NNCC is the first nation wide association of nurse-managed
health centers (NMHCs) in the United States. The organization currently
represents over 100 NMHCs and individual members in 35 states. These
centers are typically community-based non-profit organizations or are
affiliated with university-based schools of nursing. The fact that many
NNCC member centers are affiliated with schools of nursing allows them
to act as teaching centers for new nurses entering the workforce. Along
with fulfilling this important role with regard to nursing education,
these centers also provide a host of primary care, health promotion and
disease prevention services to medically underserved patients living in
both urban and rural communities. NNCC member centers are run by nurse
practitioners in partnership with the communities they serve. Many
NMHCs have established community advisory boards that give the
community a role in determining the future of the center and the
services provided. Along with nurse-practitioners, these services may
also be provided clinical nurse specialists, registered nurses, health
educators, community outreach workers, health care students and
collaborating physicians.
The vision of the NNCC is to improve the health of communities
through neighborhood-based health care services that are accessible,
acceptable, and affordable. The mission is to strengthen the capacity,
growth, and development of nurse-managed health centers to provide
quality health care services to vulnerable populations and to eliminate
health disparities in underserved communities.
THE FINANCIAL CRISIS FACED BY NURSE-MANAGED HEALTH CENTERS
Many NMHCs were initially established with the help of Nurse
Practice and Retention grants from the BHPr. However, of the 70
grantees that received Division of Nursing (DON), grants to establish
nurse-managed health centers between 1993-2001, 27 or 39 percent have
been forced to close. There are two main reasons why such a high
percentage of DON funded NMHCs are no longer in operation. The first
reason is that DON has shifted its funding priorities to nurses working
in acute care settings, and is no longer funding NMHCs. The second
reason is that even though a recent study conducted by the NNCC and
sponsored CMS found that NMHCs are safety-net providers, they do not
have access to the prospective payment system (PPS), which is offered
to other safety-net providers such as Community Health Centers (CHCs)
and Federally Qualified Health Centers (FQHCs).
Under PPS, CHCs/FQHCs are able to offset the cost of caring for the
uninsured because they receive a higher level of reimbursement for
their Medicare and Medicaid patients. Even though NMHCs also see a high
percentage of uninsured patients they cannot offset these costs through
PPS. Without PPS, NMHCs are forced to depend on low capitation payments
from managed care organizations (MCOs) and unreliable private grants.
These payments and grants are not sufficient to cover the costs of
operating NMHCs.
For example, the average cost of caring for a Medicaid recipient at
a NMHC is about $540 per year. However, Medicaid MCOs pay an average
annual capitation payment of about $144 for each Medicaid patient. This
means that capitation payments only cover about 26 percent of the costs
associated with caring for Medicaid patients. NMHCs are forced to seek
outside funding to recover the other 74 percent of these costs.
Assuming the NMHC is able to cover these costs, the center must then
take into account the costs associated with caring for their uninsured
clients that are and not eligible for capitation payments. About 46
percent of the clients receiving care at NNCC member centers around the
nation are uninsured.
In contrast, CHCs and FQHCs with access to PPS are able to recover
about 89 percent of the costs associated with their Medicaid clients.
This increased revenue allows these centers to direct a higher
percentage of their resources to covering the cost of caring for their
uninsured patients. In addition, CHCs receive an average payment of
$250 for each uninsured patient. PPS helps to ensure that CHCs/FQHCs
remain financially viable. If NMHCs do not also gain access to PPS
reimbursement many more of these centers will be forced to close
leaving thousands of medically underserved and uninsured clients
without access to critical primary care services. Congress itself has
recognized the tremendous financial challenges faced by NMHCs, and has
published language, ``encouraging HRSA to provide alternative means to
secure cost-based (or PPS) reimbursement for NMHCs'' (Senate Report
108-345 (2005) p.37).
Earlier this year the Senate Appropriations Committee praised NMHCs
for the important work they are doing to reinforce America's health
care safety-net. The committee stated, ``Nurse-Managed Health Centers
(NMHCs) serve a dual function in strengthening the health care safety-
net by providing health care to populations in underserved areas and by
providing the clinical experiences to nursing students that are
mandatory for professional development.'' (Senate Report 108-345 (2005)
p.37). If Congress truly values NMHCs this subcommittee should move to
ensure that they have access to PPS reimbursement.
NNCC requests that this subcommittee support the creation of a new
grant program under which HRSA's BPHr would be allowed to distribute
grants through which CMS could issue NMHCs PPS reimbursement. The most
likely place for BPHr to find the authority to issue such grants would
be under Title VIII of the Public Health Service Act (PHSA). Placing
the new grant program under Title VIII of the PHSA would allow NMHCs to
retain their emphasis on education and nursing workforce development.
The NNCC also requests that any NMHCs, which previously received start
up funding through DON, be automatically granted access to the newly
created PPS. As mentioned above, there are still about 48 NMHCs in
operation around the country which were established with the help of
DON grants. However, shifting funding priorities at DON have left these
centers in need of a stable source of funding. Granting them automatic
access to PPS would make them financially viable and allow them to
provide a full range of primary care, health promotion and disease
prevention services to their patients. These centers record close to
600,000 client encounters each year. Lastly, CHCs receive approximately
$250 every year for each of their uninsured patients. BHPr should be
given the discretion to provide similar grant funding to NMHCs that
provide care to a high percentage of uninsured clients.
CONCLUSION
We thank you for this opportunity to discuss the financial crisis
faced by NMHCs and the significance of maintaining their financial
sustainability. The NNCC is ready to assist policy makers in granting
NMHCs PPS reimbursement, and has already drafted a model bill that
would accomplish this goal. If the above steps are taken the NNCC
believes the future of these important safety-net providers will be
secure for years to come.
______
Prepared Statement of the National Organizations Responding to AIDS
(NORA) Coalition
RECOGNIZING THE CHALLENGES AND LOOKING TO THE FUTURE
The year 2005 brought with it a new Congress and a new
Administration, yet for people living with, and at risk for, HIV and
the organizations and agencies that serve them, things have remained
much the same. For the fourth year in a row federal funding for the
domestic HIV/AIDS portfolio remains level, and for the past two years
funding has been reduced through funding rescissions. For the fifth
consecutive year, the Centers for Disease Control and Prevention (CDC)
maintains that there are 850,000-950,000 people living with HIV in the
United States, despite a minimum of 40,000 new infections each year.\1\
And once again we find ourselves challenged to make a noticeable
difference in the course of the HIV epidemic.
---------------------------------------------------------------------------
\1\ Centers for Disease control and Prevention, ``Basic
Statistics,'' 2003. <>
---------------------------------------------------------------------------
Since 2000, the CDC has estimated that there were 850,000-950,000
people living with HIV in the United States. Since that time, the CDC
has reported that there are approximately 40,000 new HIV infections,
and 15,000 deaths from AIDS related causes, in the United States each
year.\2\ (This is a minimum number; recent data suggests that we may be
actually seeing 43,000-44,000 additional new infections each year.)
Thus, by simply doing the math it would seem that today, in 2005, there
are roughly 125,000 more people living with HIV in this country then
there were just five years ago--for a total of 975,000-1,075,000 HIV
positive Americans. In other words, 1 million people.\3\
---------------------------------------------------------------------------
\2\ Fleming, P., et al., ``HIV Prevalence in the U.S. 2000,'' 9th
Conference on Retroviruses and Opportunistic Infections, February 2002.
\3\ Ovadiya, Iris, and Tytel, Jessica, AIDS Action.
---------------------------------------------------------------------------
Twenty-four years after the start of the HIV epidemic one million
people are living in the United States with HIV--and that number
continues to grow each and every day. Despite all the progress that has
been made, from the development of new treatments and therapies to
increased availability of testing and counseling services, the epidemic
here at home is still far from over.
The U.S. domestic response has historically been a patchwork of
services, ranging from the work of community-based organizations to
that of agencies of the federal government, each of which continues to
play a critical role in addressing the epidemic. Since the beginning
the thread that has bound all of these pieces together has been the
financial support of Congress and the White House. Unfortunately,
recent fiscal constraints have caused that thread to fray--to the point
where some of the pieces are threatening to come undone. It is
increasingly clear that unless we reengage ourselves in the real work
of responding to this epidemic we will no longer be able to maintain
the public health systems that have until now have been the true
successes in addressing HIV in the United States.
Of special note, of the 1 million people who are currently living
with HIV in the United States, CDC and the Health Resources and
Services Administration (HRSA) estimate that roughly one half are
accessing regular medical care.\4\ On one level that is a very
important accomplishment. 500,000 people are receiving the live-saving
treatment and medical support that they need because our government
made an investment and a commitment to help through the establishment
of the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act and
through the commitment of additional resources to existing programs.
However, the fact remains that the other half--another 500,000--are not
in care, either because they are unaware of their HIV status or because
of financial and/or other barriers that are keeping them from getting
the care and treatment that they need. This grim statistic has remained
unchanged for the past five years. The challenge before us now is to
find a way to tip the balance.
---------------------------------------------------------------------------
\4\ Fleming, P., et al., ``HIV Prevalence in the U.S. 2000,'' 9th
Conference on Retroviruses and Opportunistic Infections, February 2002.
---------------------------------------------------------------------------
If we are going to provide care and support services for those
500,000 Americans currently not in care we must first face up to the
reality of the challenge that lies before us. Most of the programs
within the domestic federal HIV portfolio have been level-funded and/or
cut for the past four fiscal years. Many are now facing their lowest
funding levels in recent memory--despite the fact that they are seeing
an increasing demand for services. We are now finding ourselves
straining to meet the needs of the 500,000 we already serve, all the
while aware of the need to reach an additional 500,000 whose needs we
have not even begun to assess or address. Despite all of our best
efforts we are still not reaching the people who need us most. Without
access to testing and counseling, and subsequently care and treatment,
these people remain unaware of the realities of their HIV infection,
and thus unable to maintain their own health and prevent further
transmission of the virus. This is simply unacceptable.
Both CDC and HRSA have recently identified the half a million HIV
positive people not in care as a top priority for their HIV programs.
Beginning with the 2000 reauthorization of the Ryan White CARE Act,
HRSA has focused attention on what it has termed ``unmet need,''
individuals who are HIV positive and aware of their status, but not in
care. CARE Act grantees have received instructions from HRSA to
prioritize this population in the delivery of services in an attempt to
successfully connect these individuals to care. However, no additional
resources have been allocated to grantees for this task, and many
report that they are already overburdened by their current client load.
For example, in the Washington, D.C. metro area newly diagnosed HIV
positive clients are being placed on 3 month long waiting lists for
doctor's appointments.
In 2003, CDC launched Advancing HIV Prevention (AHP), a new
initiative ``aimed at reducing barriers to early diagnosis of HIV
infection and, if positive, increasing access to quality medical care,
treatment, and ongoing prevention services.'' \5\ One of the primary
goals of this national initiative is to increase access to HIV
counseling, testing, and referral to care. Since the first funds were
awarded in 2003, AHP has shown success in linking people to testing
through the use of new rapid test technologies; however, it remains to
be seen whether or not the CDC can successfully link these people to
care--and whether or not HRSA's already overburdened care system can
maintain them in services.
---------------------------------------------------------------------------
\5\ Centers for Disease Control and Prevention, ``Advancing HIV
Prevention: New Strategies for a Changing Epidemic,'' September 2003.
<>
---------------------------------------------------------------------------
Last year NORA chose to focus on building upon our past successes.
This year we must look to what we still have left to do. The AHP and
unmet need initiatives are working, but we can not expect them to be
the definitive solution. The HIV epidemic in this country continues to
evolve, and we continue to face unanticipated policy and program
challenges. In the past year alone we have seen the initial phases of
implementation of the Medicare Modernization Act, the expansion of
rapid testing technologies, and emerging concerns about the Food and
Drug Administrations (FDA) drug approval process. At the same time the
Department of Health and Human Services has committed itself to the
goal of reducing by half annual HIV infections in this country by 2010,
after realizing that the 2005 goal was out of reach. The federal
government must commit to fund, manage, and monitor the domestic
response, or else we will find ourselves falling even farther behind in
our response to the epidemic.
The challenge before us today is significant, but it is not
insurmountable. If we commit to funding that truly meets the needs of
people living with, and at risk for, HIV infection then we can change
the course of the epidemic.
We know how to provide care.
We know what it takes to link people to medical treatment.
We know how to support its communities living with HIV.
Now is the time to turn knowledge into action.
The chart that follows is NORA's funding recommendations for fiscal
year 2006.
NORA FISCAL YEAR 2006 APPROPRIATIONS REQUESTS FOR FEDERAL HIV/AIDS PROGRAMS
--------------------------------------------------------------------------------------------------------------------------------------------------------
President's Fiscal year 2006
Program Fiscal yeary 2006 need Fiscal year 2005 fiscal year 2006 Change from NORA Change from
appropriation request fiscal year 2005 recommendations fiscal year 2005
--------------------------------------------------------------------------------------------------------------------------------------------------------
DEPARTMENT OF HEALTH AND HUMAN
SERVICES
Minority HIV/ AIDS Initiative $855 million........... $399 million \1\.. $399 million..... ................. $610 million..... +$411 million
(To be added across multiple
HHS programs and included in
fiscal year 2002 program
totals as indicated).
ACF: Runaway and Homeless Youth ....................... 104 million....... 114 million...... +$10 million..... 140 million...... +36 million
Act Programs.
Agency for Healthcare Research ....................... 319 million....... 319 million...... ................. 440 million...... +121 million
and Quality.
CDC: Total--HIV, STD, TB line.. 2.33 billion........... 961.2 million..... 957.3 million.... -4 million....... 2.33 billion..... +1.27 billion
CDC: HIV Prevention and ....................... 662.6 million..... 686.6 million.... -4 million....... 1.5 billion...... +813.4 million
Surveillance.
CDC: STD Prevention............ ....................... 159.7 million..... 159.7 million.... ................. 351 million...... +191.3 million
CDC: TB Prevention............. ....................... 138.9 million..... 138.9 million.... ................. 287.3 million.... +148.4 million
CDC: Viral Hepatitis ....................... 17.36 million..... 17.36 million.... ................. 100.24 million... +82.88 million
(Infectious Disease Control
line).
CDC: DASH (Chronic Disease ....................... 56.75 million..... 56.76 million.... +0.1 million..... 88.25 million.... +31.49 million
Prevention and Health
Promotion line).
FDA............................ ....................... 1.45 billion...... 1.5 billion...... +50 million...... 1.57 billion..... +116 million
HRSA: Ryan White CARE Act Total 3.2 billion............ 2.048 billion..... 2.058 billion.... +10 million...... 2.56 billion..... +513 million
Title I........................ ....................... 610 million....... 610 million...... ................. 725 million...... +115 million
Title II: Care................. ....................... 334 million....... 334 million...... ................. 384 million...... +50 million
Title II: ADAP................. 1.5 billion (non-add).. 787 million....... 797 million...... +10 million...... 1.09 billion..... +303 million
Title III...................... ....................... 196 million....... 196 million...... ................. 236.6 million.... +41 million
Title IV....................... ....................... 72.53 million..... 72.53 million.... ................. 113.25 million... +40.72 million
Part F: AETCs.................. ....................... 35 million........ 35 million....... ................. 45 million....... +10 million
Part F: Dental Reimbursement... ....................... 13.3 million...... 13.3 million..... ................. 19 million....... +5.7 million
HRSA: Consolidated Health ....................... 1.733 billion..... 2.038 billion.... +304.2 million... 2.038 billion.... +304.2 million
Centers.
HRSA: Title V.................. ....................... 724 million....... 724 million...... ................. 755 million...... +31 million
HRSA: Title X.................. ....................... 286 million....... 286 million...... ................. 350 million...... +66 million
Indian Health Service: HIV/AIDS ....................... 2.68 million...... 2.79 million..... +0.1 million..... 10 million....... +7.32 million
Program.
NIH Office of AIDS Research.... 3.327 billion.......... 2.92 billion...... 2.93 billion..... +12 million...... 3.1 billion...... +200 million
Office of the Secretary: Office 5 million.............. .................. ................. ................. 2 million........ +2 million
of HIV/AIDS Policy.
SAMHSA: Center for Substance ....................... 1.78 billion...... 1.78 billion..... ................. 1.85 billion..... +71 million
Abuse Treatment Block Grant
\2\.
SAMHSA: Center for Substance ....................... 422.4 million..... 447.1 million.... +24.7 million.... 472 million...... +50 million
Abuse Treatment--other.
SAMHSA: Center for Substance ....................... 198.7 million..... 184.3 million.... -14.4 million.... 210 million...... +11 million
Abuse Prevention \3\.
SAMHSA: Mental Health Block ....................... 432.8 million..... 432.8 million.... ................. 471.5 million.... +38.9 million
Grant \4\.
SAMHSA: Center for Mental ....................... 176.7 million..... 144.1 million.... -32.6 million.... 191.8 million.... +15.1 million
Health Services--other \4\.
SAMHSA: GBHI................... ....................... 40.1 million...... 34.4 million..... -5.7 million..... 42.5 million..... +1.7 million
SAMHSA: PATH................... ....................... 54.8 million...... 54.8 million..... ................. 59.8 million..... +5 million
DEPARTMENT OF EDUCATION (DOE)
Protection and Advocacy for ....................... 16.6 million...... 16.6 million..... ................. 22 million....... +5.4 million
Human Rights.
DEPARTMENT OF HOUSING AND URBAN
DEVELOPMENT (HUD)
HOPWA.......................... 2.8 billion............ 282 million....... 268 million...... -14 million...... 385 million...... +103 million
McKinney-Vento Homelessness ....................... 1.241 billion..... 1.44 billion..... +199 million..... 1.572 billion.... +331 million
Assistance Grant Program.
GLOBAL HIV/AIDS PROGRAMS
President's Emergency Plan for
AIDS Relief (PEPFAR)
HIV/AIDS Programs.............. 6.7 billion............ 2.9 billion....... 3.16 billion..... +265 million..... 4.61 billion..... +1.7 billion
Global Fund to Fight AIDS,
Tuberculosis and Malaria (non-
add)
Global Fund.................... 1.5 billion............ 435 million....... 300 million...... -135 million..... 1.5 billion...... +1.06 billion
--------------------------------------------------------------------------------------------------------------------------------------------------------
\1\ NOTE.--All fiscal year 2004 amounts include the .80 percent rescission.
\2\ The numbers in this chart reflect the entire budget of SAMHSA for Substance Abuse Treatment; HIV/AIDS programs are included in this total.
\3\ The numbers in this chart reflect the entire budget of SAMHSA for Substance Abuse Prevention; HIV/AIDS programs are included in this total.
\4\ The numbers in this chart reflect the entire budget of SAMHSA for Mental Health Services; HIV/AIDS programs are included in this total.
Prepared Statement of the North American Brain Tumor Coalition
I am Gary L. Kornfeld, a nine-year survivor of a grade 3
oligoastrocytoma and Chair of the North American Brain Tumor Coalition
(NABTC). On behalf of the Coalition, I am pleased to offer these
comments regarding brain tumor research for the record of the Labor,
Health and Human Services, and Education Appropriations Subcommittee.
The NABTC, a network of 12 brain tumor organizations, is dedicated to
improving treatments for brain tumors and ensuring individuals with
brain tumors access to high quality care. The volunteers who comprise
the NABTC are survivors, family members, friends, and caregivers, and
we know firsthand the devastating effects that brain tumors can have.
We are working hard to reduce the suffering from brain tumors and
improve the outlook for all who receive this diagnosis.
Each year, approximately 190,000 people in the United States and
10,000 in Canada will be diagnosed with a primary or metastatic brain
tumor. Approximately 40,000 individuals in the United States will be
diagnosed with primary brain tumors; of this total, more than 18,000
will be diagnosed with malignant brain tumors. Brain tumors are a
leading cause of death from childhood cancer, accounting for almost a
quarter of cancer deaths in children up to 19 years of age. Brain
tumors are the second leading cause of cancer death in young adults
ages 20-39.
These numbers, as frightening as they are, do not convey the
complete story. The treatment of brain tumors is very difficult, and
factors that contribute to these treatment challenges are the location
of these tumors and the fact that there are more than 120 different
kinds of tumors. Standard therapies for brain tumors include surgery,
radiation therapy, and chemotherapy, used either individually or in
combination.
RECENT ADVANCES IN TREATMENT
There have been recent advances in the treatment of glioblastoma
multiforme (GBM), or grade IV malignant glioma, which usually causes
death in a year. Researchers have found that concurrent administration
of a chemotherapy drug, temozolomide, and radiation therapy results in
a clinically meaningful survival benefit of two and one-half months for
newly diagnosed glioblastoma patients.
These findings were published in the New England Journal of
Medicine on March 10, 2005.\1\ Temozolomide with radiation can be a
very significant development for patients with GBM, and the brain tumor
community applauds this development. However, much more must be done to
extend and improve the lives of those affected by brain tumors.
Progress against brain tumors still comes much too slowly.
---------------------------------------------------------------------------
\1\ Stupp, et al., ``Radiotherapy Plus Concomitant and Adjuvant
Temozolomide for Glioblastoma,'' New England Journal of Medicine, March
10, 2005.
---------------------------------------------------------------------------
The NABTC believes treatment strides will come through an enhanced
investment in brain tumor research and improved dissemination of
information about the best available care for brain tumors. Researchers
in the Glioma Outcomes Project recently reported troubling gaps in care
of individuals with brain tumors, suggesting that more work needs to be
done to guarantee that the best possible therapies are available to all
with brain tumors.\2\
---------------------------------------------------------------------------
\2\ Chang, et al., ``Patterns of Care for Adults With Newly
Diagnosed Malignant Glioma,'' Journal of the American Medical
Association, February 2, 2005.
---------------------------------------------------------------------------
ENHANCE THE INVESTMENT IN BRAIN TUMOR RESEARCH
In 2000, the National Cancer Institute (NCI) and National Institute
of Neurological Disorders and Stroke (NINDS) published the report of a
brain tumor research advisory panel, called the Brain Tumor Progress
Review Group. This report included an aggressive and thoughtful plan
for moving brain tumor research and treatments forward. In 2000, the
NABTC endorsed the Progress Review Group plan and urged implementation
of its key research recommendations. In 2005--half a decade after the
report's publication--the NABTC finds that the report still describes a
valid and vital plan for brain tumor research. While the continuing
relevance of the report is in part a testament to the vision of the
Progress Review Group, it is primarily a testament to the troubling
lack of progress in brain tumor research and treatment and the failure
to implement the report's recommendations.
To advance brain tumor research, the NABTC recommends that:
--NCI and NINDS implement the recommendations of the Brain Tumor
Progress Review Group. To ensure that we do not look back from
2010 and observe limited progress on the Progress Review Group
plan, the NABTC requests that NCI and NINDS submit to Congress
a brain tumor research plan, including timelines and a budget
for implementation of the PRG report.
--The Directors of NCI and NINDS appoint leaders of their extramural
brain tumor programs without delay. Strong scientific
management is necessary to ensure that the nation's financial
investment in brain tumor research is utilized as effectively
as possible. Extramural research coordinators should be
appointed at each institute to ensure that there is proper
leadership on brain tumor research issues.
--Congress provide adequate funding for existing brain tumor research
efforts. There are several structures or systems for clinical
research on brain tumors, including the brain tumor consortia
and the brain tumor specialized programs of research
significance (SPOREs), but these programs are not adequately
funded to allow investigation of all promising brain tumor
treatments and to ensure correlative studies as part of trials.
--NINDS and NCI convene a special workshop on brain tumor research.
Brain tumor research is an area where cross-disciplinary
research approaches are absolutely critical, and a workshop on
a cutting-edge brain tumor research topic would likely
stimulate innovative research efforts. A workshop is an
activity that could be undertaken by NINDS in collaboration
with NCI.
For individuals with brain tumors and their families, friends, and
caregivers, the NABTC urges a greater sense of urgency among the
leaders of NCI and NINDS regarding brain tumor research.
ELIMINATE THE TWO-YEAR WAITING PERIOD FOR MEDICARE
Although we realize Medicare is not in the jurisdiction of this
Subcommittee, we nevertheless would like to direct your attention to
important legislation, introduced by Senator Jeff Bingman (D-NM) and
Representative Gene Green (D-TX), that would eliminate the two-year
waiting period for Medicare benefits for those who have established
eligibility for Social Security Disability benefits. For many
individuals with brain tumors, the current 24-month waiting period can
result in delays in access to care that extends or improves life.
Thank you again for the opportunity to offer this brief statement
on brain tumor research and care.
______
Prepared Statement of the Oncology Nursing Society
The Oncology Nursing Society (ONS) appreciates the opportunity to
submit written comments for the record regarding funding for cancer and
nursing related programs in fiscal year 2006. ONS, the largest
professional oncology group in the United States composed of more than
31,000 nurses and other health professionals, exists to promote
excellence in oncology nursing and the provision of quality care to
those individuals affected by cancer. As part of its mission, the
Society honors and maintains nursing's historical and essential
commitment to advocacy for the public good.
This year more than 1.37 million Americans will be diagnosed with
cancer and more than 570,000 will lose their battle with this terrible
disease. Despite these grim statistics, significant gains in the War
Against Cancer have been made through our nation's investment in cancer
research and its application. Research holds the key to improved cancer
prevention, early detection, diagnosis, and treatment, but such
breakthroughs are meaningless unless we can deliver them to all
Americans in need. Recent studies have reported 126,000 registered
nurse vacancies in hospitals and 13,900 registered nurse vacancies in
nursing homes. These statistics create a sizeable barrier to ensuring
that all people benefit from breakthroughs in cancer research.
To ensure that all people with cancer have access to the
comprehensive, quality care they need and deserve, ONS advocates on-
going and significant federal funding for cancer research and
application, as well as funding for programs that help ensure an
adequate oncology nursing workforce to care for people with cancer. The
Society stands ready to work with policymakers at the local, state, and
federal levels to advance policies and programs that will reduce and
prevent suffering from cancer and sustain and strengthen the nation's
nursing workforce.
SECURING AND MAINTAINING AN ADEQUATE ONCOLOGY NURSING WORKFORCE
Over the last 10 years, the setting in which treatment for cancer
is provided has changed dramatically. An estimated 80 percent of all
Americans receive cancer care in community settings including cancer
centers, physicians' offices, and hospital outpatient departments.
Treatment regimens are as complex, if not more so, than regimens given
in the inpatient setting a few years ago. Oncology nurses are on the
front lines in the provision of quality cancer care for individuals
with cancer--administering chemotherapy, managing patient therapies and
side-effects, working with insurance companies to ensure that patients
receive the appropriate treatment, providing counseling to patients and
family members, and engaging in myriad other activities on behalf of
people with cancer and their families.
Overall, age is the number one risk factor for developing cancer.
Approximately 77 percent of all cancers are diagnosed at age 55 and
older. Currently, Medicare beneficiaries account for more than 50
percent of all cancer diagnoses and 64 percent of cancer deaths. Over
the next 10 to 15 years the number of Medicare beneficiaries with
cancer is estimated to double while more than 1.1 million registered
nursing vacancies will need to be filled by 2012 to meet growing
patient demand and replace retiring nurses. With an increasing number
of people with cancer needing high quality health care, coupled with an
inadequate nursing workforce, our nation could quickly face a cancer
care crisis of serious proportion with limited access to quality cancer
care, particularly in traditionally underserved areas. A study in the
New England Journal of Medicine found that nursing shortages in
hospitals are associated with a higher risk of complications--such as
urinary tract infections and pneumonia, longer hospital stays, and even
patient death. Without an adequate supply of nurses, there will not be
enough qualified oncology nurses to provide the quality cancer care to
a growing population of people in need and patient health and well
being could suffer.
Further, of additional concern is that our nation also will have a
shortage of nurses available and able to conduct cancer research and
clinical trials. With a shortage of nurses in cancer research, the War
against Cancer will take longer because of unfulfilled staffing needs
coupled with the reality that in some practices and cancer centers
resources could be funneled away from cancer research to pay for the
hiring and retention of oncology nurses to provide direct patient care.
Without a sufficient supply of trained, educated, and experienced
oncology nurses, our nation will falter in its delivery--or
application--of the benefits from our federal investment in research.
ONS has joined with others in the nursing community in advocating
$210 million as the fiscal year 2006 funding level necessary to support
implementation of the Nurse Reinvestment Act and the range of nursing
workforce programs housed at the U.S. Health Resources and Services
Administration (HRSA). Enacted in 2002, the Nurse Reinvestment Act
included new and expanded initiatives, including loan forgiveness,
scholarships, career ladder opportunities, and public service
announcements to advance nursing as a career. Despite the enactment of
this critical measure, HRSA fails to have the resources necessary to
meet the current and growing demands for our nation's nursing
workforce. For example, in fiscal year 2004 HRSA received 4,873
applications for the Nurse Education Loan Repayment Program, but only
had funding to award 857--a rate of 17.6 percent. Also in fiscal year
2004, the agency received 8,806 applications for the Nursing
Scholarship Program, but only could fund 126--a rate of 1.4 percent.
Further exacerbating the current situation is that nursing programs
turned away more than 125,000 qualified students last year, in part due
to a shortage of faculty. If funded sufficiently, the components and
programs of the Nurse Reinvestment Act would help address the multiple
factors contributing to the nationwide nursing shortage, including the
shortage of faculty, decline in nursing student enrollments, and poor
public perception of nursing as a viable and worthwhile profession.
ONS strongly urges Congress to provide HRSA with a minimum of $210
million in fiscal year 2006 to ensure that the agency has the resources
necessary to fund a higher rate of Nurse Education Loan Repayment and
Nursing Scholarship applications as well as implement other essential
endeavors to sustain and boost our nation's nursing workforce. Nurses--
along with patients, family members, hospitals, and others--have joined
together in calling upon Congress to provide this essential level of
funding. One Voice Against Cancer (OVAC)--a collaboration of more than
45 national nonprofit organizations representing millions of
Americans--has added a request of $210 million for the Nurse
Reinvestment Act funding to its fiscal year 2006 appropriations
advocacy agenda. ONS and its allies have serious concerns that without
full funding, the ``Nurse Reinvestment Act'' will prove an empty
promise; the current and expected nursing shortage will worsen and
people will not have access to the quality cancer care they need and
deserve.
BOOST OUR NATION'S INVESTMENT IN CANCER PREVENTION, EARLY DETECTION,
AND AWARENESS
Approximately two-thirds of cancer cases are preventable through
lifestyle and behavioral factors and improved practice of cancer
screening. Although the potential for reducing the human, economic, and
social costs of cancer by focusing on prevention and early detection
efforts remains great, our nation does not invest sufficiently in these
strategies. While as a nation we spend almost a trillion dollars a year
on our health care system, we only allocate about one percent of that
amount for population-based prevention. By the year 2020, cancer and
other chronic disease expenditures will reach one trillion dollars or
80 percent of health care costs. The nation must make significant and
unprecedented federal investments today to address the burden of cancer
and other chronic diseases, and to reduce the demand on the healthcare
system and diminish suffering in our nation both for today and
tomorrow.
As the nation's leading prevention agency, the Centers for Disease
Control and Prevention (CDC) plays an important role in translating and
delivering at the community level what is learned from research--
especially ensuring that those populations disproportionately affected
by cancer receive the benefits of our nation's investment in medical
research. Therefore, ONS joins with our partners in the cancer
community--including OVAC--in calling on Congress to provide additional
resources for physical activity, nutrition, and tobacco control
programs and other cancer-related screening, prevention, and public
health education efforts supported through the CDC to support and
expand much-needed and proven effective cancer prevention, early
detection, and risk reduction efforts. Specifically, ONS advocates the
appropriation of $404 million in fiscal year 2006 for the Centers for
Disease Control and Prevention's (CDC) comprehensive cancer, ovarian
cancer, breast and cervical cancer early detection, cancer registries,
prostate cancer, colorectal cancer, and skin cancer programs. ONS also
urges an increase funding for the CDC's physical activity, nutrition,
and tobacco-control programs to help reduce risk factors for developing
cancer and other chronic diseases, diminish suffering from cancer, and
decrease the demand on the healthcare system.
--$250 million for the National Breast and Cervical Cancer Early
Detection Program;
--$65 million for the National Cancer Registries Program:
--$25 million for the Colorectal Cancer Prevention and Control
Initiative;
--$25 million for the Comprehensive Cancer Control Initiative;
--$20 million for the Prostate Cancer Control Initiative;
--$5 million for the National Skin Cancer Prevention Education
Program;
--$9 million for the Ovarian Cancer Control Initiative;
--$5 million for the Geraldine Ferraro Blood Cancer Program;
--$145 million for the National Tobacco Control Program; and
--$70 million for the Nutrition, Physical Activity, and Obesity
Program.
SUSTAIN AND SEIZE CANCER RESEARCH OPPORTUNITIES
Our nation has benefited immensely from past federal investment in
biomedical research at the National Institutes of Health (NIH). ONS has
joins with the entire cancer community in advocating $30.1 billion for
the NIH in fiscal year 2006. This will allow NIH to sustain and build
on its research progress resulting from the recent NIH budget doubling
effort while avoiding the severe disruption to that progress that would
result from a minimal increase.
Cancer research is producing extraordinary breakthroughs--leading
to new therapies that translate into longer survival and improved
quality of life for cancer patients. We have seen extraordinary
advances in cancer research resulting from our national investment that
have produced effective prevention, early detection and treatment
methods for many cancers. To that end, ONS calls upon Congress to
allocate $5.21 billion to the National Cancer Institute (NCI) in fiscal
year 2006 to continue our battle against cancer.
The National Institute of Nursing Research (NINR) supports basic
and clinical research to establish a scientific basis for the care of
individuals across the life span--from management of patients during
illness and recovery to the reduction of risks for disease and
disability and the promotion of healthy lifestyles. These efforts are
crucial in translating scientific advances into cost-effective health
care that does not compromise quality of care for patients.
Additionally, NINR fosters collaborations with many other disciplines
in areas of mutual interest such as long-term care for older people,
the special needs of women across the life span, bioethical issues
associated with genetic testing and counseling, and the impact of
environmental influences on risk factors for chronic illnesses such as
cancer. ONS joins with the nursing community in advocating an
allocation of $160 million for NINR in fiscal year 2006.
CONCLUSION
ONS stands ready to work with policymakers to advance policies and
support programs that will reduce and prevent suffering from cancer
this year and sustain and strengthen our nation's nursing workforce.
Moreover, ONS maintains a strong commitment to working with Members of
Congress, other nursing societies, patient organizations, and other
stakeholders to ensure that the oncology nurses of today continue to
practice tomorrow and that we recruit and retain new oncology nurses to
meet the unfortunate growing demand that we will face as the baby boom
generation ages. We thank you for this opportunity to discuss the
funding levels necessary to ensure that our nation has a sufficient
nursing workforce to care for the patients of today and tomorrow and
that our nation continues to make gains in our fight against cancer.
______
Prepared Statement of the Procter & Gamble Company
Procter & Gamble appreciates the opportunity to provide testimony
in support of funding for the Interagency Coordinating Committee on the
Validation of Alternative Methods (ICCVAM) and pain and distress
research under the jurisdiction of the Labor, Health and Human
Services, Education and Related Agencies Subcommittee in fiscal year
2006.
As a leader in the development of alternatives to animal testing,
P&G is committed to eliminating animal testing for products intended
for human use. We are working on a global basis with governments and
academia to eliminate regulations that require unnecessary animal
testing and to promote the acceptance of alternatives. To date, P&G has
devoted significant resources to this effort and helped to develop more
than 50 proven alternative methods. Despite these advances, it is
acknowledged that state-of-the-art science cannot replace animal
research at present and far more research is needed, by governments,
academia and the private sector, for the development, promotion and
validation of alternative test methods.
INTERAGENCY COORDINATING COMMITTEE ON THE VALIDATION OF ALTERNATIVE
METHODS (ICCVAM)
We were very pleased that Congress enacted Public Law 106-545 by
unanimous voice vote in both chambers in 2000. This legislation,
introduced by Senator Mike DeWine (R-OH) and Representatives Ken
Calvert (R-CA) and Tom Lantos (D-CA), strengthened and made permanent
the Interagency Coordinating Committee on the Validation of Alternative
Methods (ICCVAM). The statute has already begun to enhance the federal
government's capacity to evaluate and adopt chemical testing methods
that are often faster, cheaper, and more scientifically sophisticated
than current methods, as well as more responsive to the public's
concerns about the welfare of animals used in toxicity testing. Public
Law 106-545 has streamlined the process by which these better methods
are validated and assessed, and has eased institutional barriers within
federal agencies that discourage their use.
ICCVAM performs an invaluable ``win-win'' function for regulatory
agencies and stakeholders in industry, public health, and animal
protection by assessing the suitability of new toxicological test
methods that have interagency application. These new (and newly
revised) methods include alternative methods that can limit animal use
or suffering in testing. After appropriate independent peer review of a
new test method, ICCVAM provides its assessment of the new test to the
federal agencies that regulate the particular endpoint that the test
measures. In turn, the federal agencies maintain their authority to
incorporate the validated test method as appropriate for the agencies'
regulatory mandates. This streamlined approach to assess the validation
status of new test methods has reduced the regulatory burden of
individual agencies, provided ``one-stop shopping'' for industry,
animal protection, and public health advocates to consider test
methods, and set uniform criteria for what constitutes a validated test
method.
ICCVAM arose from an initial mandate in the NIH Revitalization Act
of 1993 for the National Institute of Environmental Health Sciences
(NIEHS) to ``(a) establish criteria for the validation and regulatory
acceptance of alternative testing methods, and (b) recommend a process
through which scientifically validated alternative methods can be
accepted for regulatory use.'' In 1994, NIEHS established an ad hoc
ICCVAM to write a report that would recommend criteria and processes
for validation and regulatory acceptance of toxicological testing
methods that would be useful to federal agencies and the scientific
community. Through a series of public meetings, interested stakeholders
and agency representatives from 14 regulatory and research agencies
developed NIH Publication No. 97-3981, Validation and Regulatory
Acceptance of Toxicological Test Methods. This report has become the
``sound science'' guide for consideration of new test methods by the
federal agencies and interested stakeholders. After publication of the
report, the ad hoc ICCVAM moved to standing status under the NIEHS'
National Toxicology Program Interagency Center for the Evaluation of
Alternative Toxicological Methods (NICEATM). Representatives from
federal regulatory and research agencies have continued to meet, with
advice from NICEATM's Scientific Advisory Committee and independent
peer review committees, to assess the validation of new toxicological
test methods.
Since its inception, ICCVAM has conducted rigorous evaluations of
several test methods and has concluded that these methods are
scientifically valid, i.e., have been adequately validated, and are
acceptable for specific purposes. These methods include Corrositex,
Epiderm, Episkin, and Transcutaneous Epithelial Resistance assays for
assessing skin corrosivity; the 3T3 NRU Phototoxicity assay for
assessing phototoxicity; the Local Lymph Node Assay for assessing skin
sensitization; and the Up and Down Method and various cytotoxicity
assays for assessing acute systemic toxicity. In turn, the appropriate
regulatory agencies have incorporated these methods into their
regulatory practices.
The open public comment process, input by interested stakeholders,
and the continued commitment by various federal agencies have all
enhanced the ICCVAM process. Now, under Public Law 106-545, ICCVAM is
poised to go beyond its largely passive role of assessing the
validation status of test methods that have been developed and
validated by industry and others. ICCVAM should adopt a more proactive
role in developing and validating promising tests methods in
partnership with outside stakeholders, to ensure that a steady stream
of new test methods are available for review and adoption by the
federal government. Such a proactive stance and partnership with
stakeholders will enable the federal government to better harness the
potential of emerging technologies to meet the challenge of efficiently
testing large numbers of chemicals with minimal cost in terms of money
and animal lives. With a more proactive approach, ICCVAM could, for
example, explore the potential of investigator-initiated and small
business grant programs to further its mission.
Adequate funding should be provided for ICCVAM to put the resources
in place to ensure the federal government and industry have the best
available tools with which to assess the toxic properties of chemicals
in commerce. To accomplish this, we respectfully request an earmark of
$3.6 million for fiscal year 2006 and the following Committee Report
language:
``In order for the Interagency Coordinating Committee for the
Validation of Alternative Methods (ICCVAM) to carry out its
responsibilities under the ICCVAM Authorization Act of 2000, the
Committee strongly urges NIEHS to strengthen the resources provided to
ICCVAM for methods validation reviews in fiscal year 2006. ICCVAM and
NIEHS activities must include up-front validation study design,
execution, and review to ensure that new and revised test methods, non-
animal test methods, and alternative test methods (such as QSARs,
mechanistic screens, high throughput assays, and toxicogenomics) are
deemed scientifically valid before they are recommended or adopted for
use by federal agencies or used in implementing the National Toxicology
Program's Road Map and Vision for NTP's toxicology program in the 21st
century.''
PAIN AND DISTRESS RESEARCH
An estimated 40 percent of the National Institutes of Health (NIH)
budget--or currently more than $11 billion--is devoted to some aspect
of animal research. At this time, no funding is set aside specifically
for research into alternatives that reduce the amount of pain and
distress to which research animals are subjected, nor methods that
replace or reduce the use of vertebrate animals in research. NIH may
receive $28.8 billion in fiscal year 2006 if Congress fulfills the
President's budget request. Out of this funding, we seek $2.5 million
(0.009 percent) for research and development focused on identifying and
alleviating animal pain and distress. In addition to our request for a
specific funding amount, we also urge the Committee to specify in
report language that this research should be conducted in conjunction
with, or ``piggy-backed'' onto, ongoing research that already causes
pain and distress. Infliction of pain and distress on additional
animals is unnecessary, given the volume of existing research (we
estimate a minimum of 20-25 percent of all animal research) that is
believed to involve moderate to significant pain and/or distress.
The large extent to which animals are used in federally-funded
research underscores the importance of earmarking funds for pain and
distress research. NIH has a statutory mandate to conduct or support
research into alternative methods that produce less pain and distress
in animals. This was specified in the NIH Revitalization Act of 1993
regarding a plan for the use of animals in research. Earmarked funding
will assist NIH in meeting this mandate. Additionally, researchers
themselves often comment publicly at scientific meetings about the
urgent need for funding in order to properly understand and mitigate
pain and distress in research animals and to follow Animal Welfare Act
and Public Health Service policy requirements to minimize pain and
distress.
It is well known that uncontrolled, undetected, and unalleviated
pain and distress has adverse effects on animal welfare, which leads to
adverse effects on the quality of science. Ultimately, the lack of
information on pain and distress leads to misinterpretation of research
results that could result in harmful effects in human beings when pre-
clinical animal research results are applied to humans in clinical
trials.
A 2001 survey conducted by an independent polling firm indicates
that concern about animal pain and distress strongly influences public
opinion about animal research in general. Seventy-five percent of the
American public opposes research that causes severe animal pain and/or
distress, even when it is health-related. Despite this public concern,
NIH has failed to sponsor research and development aimed at determining
how to minimize animal suffering and distress in the laboratory.
During the past several years, our organization has been reviewing
institutional policies and practices with respect to pain and distress
in animal research. We have found that research institutions have
inconsistent policies due to the lack of information on this subject,
and that standards vary greatly from one institution to another. The
federal standard for determining laboratory animal pain specifies that,
if a procedure causes pain or distress to humans, it should be assumed
to cause pain and distress to animals. Furthermore, while human
experience can and should provide a useful guide in some cases, there
are others in which humans are never subjected to the conditions facing
laboratory animals. Information on pain and distress that animals
themselves actually experience is important.
Our nation takes pride in leading the world in biomedical research,
yet we lag behind many other countries in our efforts to minimize pain
and distress in animal subjects. For example, the United Kingdom,
Sweden, Switzerland, Germany, the Netherlands and the European Union
all have committed funds specifically for the ``three R's'' (replacing
the use of animals, reducing their use, and refining research
techniques to minimize animal suffering).
We urge the Committee to make this small investment of $2.5 million
to promote animal welfare and enhance the integrity of scientific
research. We also respectfully request this accompanying committee
report language:
``The Committee provides $2.5 million to support research and
development focused on improving methods for recognizing, assessing,
and alleviating pain and distress in research animals. No pain and
distress should be inflicted solely for the purpose of this initiative,
since the investigations can and should be conducted in conjunction
with ongoing research that is believed to involve pain and distress
under Government Principle IV of Public Health Service Policy, which
assumes that procedures that cause pain and distress in humans may
cause pain and distress in animals.''
Again, we appreciate the opportunity to share our views regarding
priorities for the Labor, Health and Human Services, Education and
Related Agencies Appropriation Act of fiscal year 2006. We hope the
Committee will be able to accommodate these modest requests that will
benefit animals, enhance effectiveness of toxicological testing, and
improve the quality of research. Thank you for your consideration.
______
Prepared Statement of the Society for Animal Protective Legislation
On behalf of the Society for Animal Protective Legislation (SAPL)
and Doris Day Animal League I would like to discuss several important
issues within the jurisdiction of this committee. In addition, SAPL
endorses the funding request by the Doris Day Animal League for fiscal
year 2006 to operate the National Institute of Environmental Health
Sciences' (NIEHS) National Toxicology Program Interagency Center for
the Evaluation of Alternative Toxicological Test Methods (NICEATM) for
Interagency Coordinating Committee for the Validation of Alternative
Methods (ICCVAM) activities for fiscal year 2006.
CRIMINAL ANIMAL CRUELTY CHARGES FILED AGAINST NIH'S ALAMOGORDO PRIMATE
FACILITY
For years, the NIH funded the New Mexico-based Coulston Foundation
primate testing lab with millions of taxpayer-funded dollars despite
the lab's continued violations of the Animal Welfare Act. Compliance
with federal animal welfare laws is a requirement for receipt of
federal funds. The Coulston situation resulted in unprecedented
regulatory action by the U.S. Department of Agriculture, international
media interest, and intense Congressional scrutiny. The NIH's actions
at Coulston prompted the House Committee on Energy and Commerce to
launch a broad investigation of the mismanagement of billions of
dollars in taxpayer-funded grants by NIH.
Under the intense pressure from Congress, the NIH eventually
stopped funding the Coulston lab. The agency assumed ownership of the
facility located on Holloman Air Force Base, renamed it the Alamogordo
Primate Facility (APF), and in June 2001 awarded Charles River
Laboratories with a 10-year, $42 million contract to operate the lab,
which houses approximately 265 government-owned chimpanzees. The NIH is
legally responsible for the ``day-to-day management'' of the APF
including its ``associated animal activities.'' The APF is an
intramural NIH lab and is listed under the agency's Animal Welfare
Assurance.
One would think that after the years of Coulston abuses--and the
accompanying NIH malfeasance that prompted a Congressional
investigation--the agency would be that much more careful to ensure
that the lab it now directly owns and manages would comply with the
most basic precepts of animal welfare and simple human decency.
One would be wrong.
In September 2004, New Mexico District Attorney Scot Key filed
multiple counts of criminal animal cruelty, accusing the NIH's
handpicked contractor, Charles River Laboratories, and APF Director,
veterinarian Rick Lee, of institutional negligence in the deaths of two
chimpanzees and the near-death of a third. The D.A.'s independent
criminal investigation found that it was ``standard practice'' for
Charles River to leave critically ill chimpanzees in the ``care'' of
security guards after trained animal care staff repeatedly walked off,
clocking out at the end of the workday around 4:00 p.m.
Because the APF is a federal research facility, it is required to
comply with the Animal Welfare Act, but the USDA has no jurisdiction to
enforce it. In 2001, the New Mexico legislature, prompted by the
continuing abuses at Coulston and the federal government's inability to
stop them, amended the state's animal cruelty statute to remove the
blanket exemption for research facilities.
In September 2003, the NIH was informed that the D.A. had initiated
a criminal investigation against Charles River; that APF Director Lee
had illegally threatened employees with lie detector tests in an
attempt to find out who had leaked information about the treatment of
the chimpanzees; and that the allegations were worse than anything ever
documented at the Coulston lab. On October 1, 2003, an ad hoc NIH
consultant, veterinarian Thomas Butler, conducted a one-day site visit
along with the NIH official, Dr. Raymond O'Neill, in charge of
overseeing the contract with Charles River. Butler's ``site visit''
report--compiled in less than one day by an ad hoc NIH consultant with
no law enforcement authority--was neither thorough nor an
investigation. Indeed, it completely failed to address the heart of the
criminal charges: Charles River's abandonment of the three
chimpanzees--including Rex, who was unconscious and vomiting--to
security guards. In stark contrast to the NIH consultant's report,
multiple eyewitnesses named in the D.A.'s months-long independent
criminal investigation corroborated the criminal charges.
On March 23, 2005, New Mexico judge Jerry Ritter accepted Charles
River's argument that it was engaged in the practice of veterinary
medicine, and dismissed the charges; he issued no written opinion
regarding the other legal technicalities. By making this argument,
Charles River and the NIH have conceded that for them, the ``practice
of veterinary medicine'' constitutes intentional and repeated
abandonment of critically ill or injured chimpanzees to once-per-hour
observation by untrained security guards.
Charles River never denied the facts alleged by the D.A. in the
criminal charges, and the judge's decision did not deny the merits of
the case. For now, Charles River and the NIH are accountable to
absolutely no legitimate law enforcement authority. Neither the D.A.,
the USDA, nor the New Mexico Veterinary Board have any jurisdiction
over the APF. The only ``oversight'' is provided by the NIH--the very
definition of a conflict of interest--whose malfeasance at this very
same facility when it was operated by the Coulston Foundation prompted
a Congressional investigation of the entire agency.
After the years of abuse at Coulston, the situation at this
government-owned facility descended into alleged criminal animal
cruelty while the agency was paying Charles River millions of tax
dollars annually, including $175,000 in maximum bonus incentives.
Charles River and the NIH have never denied the cold, cruel facts
alleged by the D.A. in criminal charges resulting from a months-long
independent criminal investigation conducted by a 24-year police
veteran.
Charles River and the NIH cannot be allowed to evade their
culpability by hiding behind legal technicalities, half-truths and the
typical NIH whitewash. This small-town District Attorney was attempting
to uphold the law and do the job that a $28 billion federal agency has
refused to do. We urge Congress to step into this gaping void of
oversight and hold accountable the perpetrators of this unconscionable
cruelty and their violation of the most basic standards of simple human
decency. Congress should continue to actively investigate NIH's
mismanagement of the APM and hold public hearings into the situation.
NIH FAILS TO ADDRESS THIS SUBCOMMITTEES CONCERN ON ILLEGALLY ACQUIRED
DOGS AND CATS
Approximately 90,000 dogs and cats are used for experimentation in
the United States each year. The vast majority of these animals are
obtained from breeders who raise the animals under controlled
conditions and have extensive information on their genetic background
and health and vaccination status. In addition, some dogs and cats are
being bred for experimentation at research facilities like the
University of Texas, and in some cases, inexpensive random type animals
are purchased directly from animal pounds.
Despite extensive documentation strongly discouraging the practice,
some research facilities are foot-dragging by continuing to buy dogs
and cats from random source dealers. These dealers, with a Class B
license designation by the U.S. Department of Agriculture (USDA), are
notorious for selling animals to laboratories that have been acquired
illegally and for their widespread failure to comply with other minimum
requirements under the Animal Welfare Act.
The saga of C.C. Baird is a prime example of the problem. Baird was
a licensed dealer who sold random source dogs and cats for
experimentation for about 15 years. More than a year and a half ago,
126 animals were seized by federal authorities because their health was
in jeopardy. And shortly thereafter USDA finally filed charges against
him for hundreds of violations of the Animal Welfare Act stating, ``The
violations alleged in this complaint are of the utmost seriousness, and
include severe mistreatment and neglect of a multitude of animals in
respondents' custody, falsification of health certificates for dogs and
cats that respondents sold to research facilities, multitudinous
record-keeping deficiencies and instances of noncompliance with the
barest standards of care, husbandry and housing for dogs and cats.''
The charges against Baird included failure to provide adequate
veterinary care and illegal acquisition of animals.
--Dog Dealer's Day of Reckoning: http://www.awionline.org/pubs/
Quarterly/03-52-4/524p1011.htm
--A Glimpse Behind the Kennel Door: http://www.awionline.org/pubs/
Quarterly/04-53-3/533p16.htm
--Random Source Dealer Surrenders: http://www.awionline.org/pubs/
Quarterly/05-54-1/541p2.htm
Despite all of this, several registered research facilities
including the University of Missouri continued to purchase animals from
him. Unless NIH gives proper direction, some institutions will continue
to place a higher priority on a cheap, ready supply of dogs than
ensuring that animals are legally acquired and properly cared for.
Thankfully, Baird has finally been put out of business. In fact, less
than 20 Class B dealers remain, but the problems will persist until
their number is reduced to zero.
NIH has told this Subcommittee that it is ``committed to ensuring
the appropriate care and use of animals in research.'' However, NIH has
left the decision of whether or not to buy dogs and cats from random
source dealers ``to the local level on the basis of scientific need.''
NIH defends the use of Class B dealers arguing that these dealers are
needed to obtain ``animals that may not be available from other
sources, such as genetically diverse, older, or larger animals.'' In
fact, in the rare circumstance that a researcher asserts the need for
such animals, they can be obtained directly from pounds as noted
previously.
The distinction between non-purpose-bred animals from pounds versus
Class B dealers must be made. By using Class B dealers (middlemen)
instead of pounds, researchers are contributing to the problem. In
their search to fill researchers' demands for ``genetically diverse,
older or larger animals,'' random source dealers and their suppliers
may be stealing pets from backyards and farms or they are acquiring
animals through fraud by collecting animals offered ``free to a good
home.''
All animals used in research should be obtained from legitimate
sources.
Taxpayer dollars, in the form of NIH extramural grants, must not
continue to fund purchase of dogs and cats from dealers whose modus
operandi are pet theft, acquisition of pets by fraud, payments made
under the table and other illegal activities. Proper oversight of NIH's
dispersal of extramural grants is urgently needed. We respectfully
request that this Subcommittee include the following language in the
HHS appropriations bill: ``None of these funds shall be used for
research which utilizes dogs and/or cats obtained from random source
dealers.''
______
Prepared Statement of the Tri-Council for Nursing
The Tri-Council for Nursing is an alliance of four national nursing
organizations--the American Association of Colleges of Nursing (AACN),
the American Nurses Association (ANA), the American Organization of
Nurse Executives (AONE), and the National League for Nursing (NLN).
Focused on leadership and excellence in nursing, the Tri-Council
represents the breadth of the nursing profession including practicing
nurses, nurse executives, nurse educators, and nurse researchers.
The Nursing Workforce Development Programs under Title VIII of the
Public Health Service Act strive to meet the health needs of the nation
by assuring an adequate supply and distribution of qualified nursing
personnel. These Programs increase access to quality care through
improved composition, diversity, and retention of the nursing
workforce; improved quality of nursing education and practice; and the
identification of and use of data, and program performance measures and
outcomes to make informed decisions on nursing workforce issues. The
Tri-Council for Nursing urges Congress to ensure that adequate funding
is available to address the critical nursing shortage through the
Nursing Workforce Development Programs authorized by Title VIII of the
Public Health Service Act.
This testimony highlights the fundamental importance of the Nursing
Workforce Development Programs as they relate to an adequately prepared
nursing workforce. As an example, we would like to bring the public
health role of nurses and the vital services they are providing to this
nation today to the forefront of your attention.
Nurses are a critical, but often unrecognized, component of the
federal medical response to major emergencies and disasters, both
natural and manmade. In the case of a major emergency, nurses have and
will continue to be called upon to assist with chemoprophylaxis (oral
or injectable medications/vaccinations) of hundreds of thousands or
millions of Americans. The Office of Public Health Preparedness at the
Health Resources and Services Administration (HRSA) estimates that a
population of 100,000 people attacked by biological weapons would
require 200 personnel working 100 hours just to deliver
chemoprophylaxis. This effort would require approximately 16,171
trained persons for a city the size of New York. Nurses will also be
called upon to assist with the planned use of ``special needs
shelters'' during disasters. People in special needs shelters may
include an insulin-dependent diabetic who requires frequent monitoring,
epileptic persons with a history of unstable seizure activity, and
persons with disabilities requiring assistance with activities of daily
living.
Today's nursing shortage is very real and very different from any
experienced in the past. It is evidenced by acute shortages of
registered nurses (RNs) who are adequately prepared to meet patient
care needs in a changing health care environment across the country.
Although applications and enrollments for nursing programs have
increased due to the major marketing efforts of corporations and health
care providers, a serious nursing faculty shortage prevents the
expansion of nursing programs to educate the number of nurses needed
now and in the future. Studies have shown that unless dramatic steps
are taken, the supply of appropriately prepared nurses will fall far
short of what is needed to meet the needs of a diverse population and
that this shortfall will grow more serious over the next 20 years.
Since RNs represent the largest portion of our health care workforce,
the shortage threatens the very essence of our health care system.
In February 2004, the Bureau of Labor Statistics reported that
registered nursing would have the greatest job growth of all
professions in the United States in the years spanning 2002 to 2012.
During this ten-year period, health care facilities will need to fill
more than 1.1 million RN job openings. HRSA projects that, absent
aggressive intervention, the RN workforce will fall 29 percent below
requirements by the year 2020.
The increasing health care demands of an aging population and
changes in the country's nursing work-force have combined to create a
shortage unlike any other. A fundamental shift has occurred in the RN
workforce over the last two decades. As occupational opportunities for
young women have expanded, and the changing health care environment has
increased stresses on nursing, the number of young people entering the
profession has declined resulting in a steady and dramatic increase in
the average age of the nurse. Today, the average working RN is more
than 43 years old.
NURSES--INCREASING ACCESS TO QUALITY PATIENT CARE
Studies have shown that insufficient numbers of nurses contribute
to medical errors, poor patient outcomes, and increased mortality
rates. A study published in the May 30, 2002, New England Journal of
Medicine reported that higher levels of nursing care correlate with
better patient care. Another study published in the October 23, 2002,
Journal of the American Medical Association found that among the
surgical patients studied, a pronounced correlation existed between
nursing shortages and both patient mortality and failure to rescue.
By the year 2025, 68.3 percent of the current nursing workforce
will be among the first of 78 million baby boomers reaching retirement
age and enrolling in the Medicare program. By 2030, 20 percent of the
population--70 million--will be older Americans, more than twice their
number in 1999. The emerging complex health and social conditions of an
aging population demonstrate the need for more and experienced nurses
to care for this special population. Funding to support additional
research and education in this area is needed.
Nurses can increase the public's access to quality primary health
care through advanced practice registered nurses (APRNs), RNs who have
attained advanced expertise in the clinical management of health
conditions. Typically, an APRN holds a master's degree with advanced
didactic and clinical preparation beyond that of the RN. Practice areas
include, but are not limited to, anesthesiology, family medicine,
gerontology, pediatrics, mental health, and midwifery. APRNs include:
Nurse Practitioners (NPs) who diagnose and treat common illnesses
and injuries; provide immunizations; manage high blood pressure,
diabetes, and other chronic problems; order and interpret lab tests;
and counsel patients on adopting healthy lifestyles. Research confirms
that NPs improve the public's access to high quality care at a cost
savings to the system while a landmark study published in 2000 in the
Journal of the American Medical Association indicates that NP quality
of care is equal to that of physicians.
Clinical Nurse Specialists (CNSs) who provide care in a range of
specialty areas, such as oncology, neonatal, and obstetric/
gynecological nursing, pediatrics, and psychiatric/mental health while
working in hospitals and other clinical sites. CNSs develop quality
assurance procedures and serve as educators and consultants. An
estimated 69,000 CNSs are currently in practice.
Certified Nurse-Midwives (CNMs) who provide prenatal and
gynecological care to normal healthy women; deliver babies in
hospitals, private homes, and birthing centers; and continue with
follow-up postpartum care. Of all visits to CNMs, 90 percent are for
primary, preventive care that includes gynecologic care such as annual
exams and reproductive health visits.
Certified Registered Nurse Anesthetists (CRNAs) who administer more
than 65 percent of all anesthetics given to patients each year, and are
the sole anesthesia providers in approximately two-thirds of all rural
hospitals.
As more acute public health needs exist in our communities, nurses,
through their professional qualifications and sheer numbers, are at the
very core of the nation's public health infrastructure.
``Nurse managed centers'' (NMCs) play an important role in the
health services delivery system and offer a unique approach to primary
care that emphasizes health promotion and disease prevention,
particularly in underserved communities. They often serve at-risk
persons who might not otherwise receive health care. About half of all
their patients are uninsured and many are unable to turn elsewhere for
medical care. In the Philadelphia region, for example, nurses at nurse-
managed health centers see their patients almost twice as often as
other providers see theirs; their patients are hospitalized 30 percent
less and use the emergency department 15 percent less often than those
patients of other health care providers. Unfortunately, NMCs often
struggle or fail to remain financially viable; the centers themselves
need a safety net to survive financially.
The Nursing Workforce Development Programs of Title VIII provide
the ability to maintain and expand the availability of a qualified
nursing workforce and facilitate the integration of underrepresented
populations into nursing.
Section 811.--The Advanced Education Nursing Program--funds
traineeships for individuals preparing to be nurse practitioners, nurse
midwives, nurse administrators, and public health nurses. In addition,
grants are awarded to nursing schools to support education and training
of APRNs.
Section 821.--The Nursing Workforce Diversity Program--funds grants
to increase nursing education opportunities for individuals who are
from disadvantaged backgrounds by providing student stipends, pre-entry
preparation, and retention activities. These opportunities ensure a
culturally diverse workforce to provide health care for a culturally
diverse patient population.
Section 831.--The Nurse Education, Practice and Retention Program--
provides grant support for academic and continuing education projects
designed to strengthen the nursing workforce. Several of this program's
priorities apply to quality patient care including developing cultural
competencies among nurses and providing direct support to establishing
or expanding NMCs in non-institutional settings to improve access to
primary health care in medically underserved communities. It also
serves to provide grants to eligible entities to improve retention of
nurses and enhanced patient care.
Section 846.--The Loan Repayment and Scholarship Programs--is
divided into two primary components. The Nursing Education Loan
Repayment Program assists individual registered nurses by repaying up
to 85 percent of their qualified educational loans over three years in
return for their commitment to work at health facilities with a
critical shortage of nurses. Similarly, the Nurse Scholarship Program
provides financial aid to individual nursing students in return for
working a minimum of two years in a health care facility with a
critical nursing shortage.
Section 855.--The Comprehensive Geriatric Education Grant Program--
focuses on training, curriculum development, faculty development, and
continuing education for nursing personnel caring for the elderly.
NURSES--EDUCATING THE FUTURE
At nursing schools across the nation, a surge of qualified
applicants, who could ease the worsening shortage of nurses, is being
turned away because schools of nursing are suffering from a continuing
and growing shortage of faculty. This situation is not expected to
improve in the near term, since an adequate number of nurse educators
are currently not in the education pipeline.
The nursing faculty shortfall is driven by health care jobs that
offer better pay than faculty positions and by fewer nurses pursuing
the doctorate required for full-time teaching positions. Just as with
the nursing workforce, the faculty is graying and a wave of retirements
is expected about the same time when more care will be needed for aging
baby boomers. An insufficient faculty was the top reason cited by
nursing schools for not accepting all qualified applicants into entry-
level programs for the 2004-2005 academic year. Just as important as
educational incentives are for future practicing nurses, the
scholarships for doctoral students who will instruct the next
generation of nurses are even more critical.
Title VIII funding bolsters existing programs to increase the
number of qualified nurse faculty.
Section 846A.--The Nurse Faculty Loan Program--supports the
establishment and operation of a loan fund within participating schools
of nursing to assist RNs to complete their education to become nursing
faculty. The Program provides a cancellation provision in which 85
percent of the loan may be cancelled over four years in return for
serving full time as faculty in a school of nursing.
Section 811.--The Advanced Education Nursing Program--provides
trainee support for individuals preparing to be nurse educators. These
funds support master's and doctoral programs, combined RN/master's
degree programs, and post-nursing master's certificate programs.
SUMMARY
While the Tri-Council for Nursing is encouraged by a recent
resurgence of interest in the nursing profession, we are concerned that
the funding levels for the Title VIII--Nursing Workforce Development
Programs are insufficient to assist qualified students to enter,
advance, and remain within the nursing profession. The nursing shortage
will continue to worsen if significant investments are not made in
these Title VIII programs. Recent efforts have shown that aggressive
and innovative strategies can help avert the impending nursing
shortage--if they are adequately funded. The contributions of nurses in
our health care system are complex and multifaceted, and are directly
impacted by the level of federal funding that supports nursing
programs.
______
Prepared Statement of Patient Services Incorporated (PSI)
PATIENT SERVICES INCORPORATED MEDICAL INSURANCE AND CO-PAYMENT
ASSISTANCE CASE MANAGEMENT PROGRAM FOR HEPATITIS C
PSI believes that its 16 years of proven patient assistance and
results can and will translate into providing successful solutions to
two major challenges in healthcare policy that the United States is
currently facing:
--Providing standard comprehensive health insurance coverage for the
uninsured and the underinsured in this country.
--Developing a public-private partnership to solving this problem in
light of the tightening budget constraints at the federal and
state government levels.
With our goals and vision in mind, PSI would use the federal
resources to further develop and augment the Medical Insurance and Co-
payment Assistance Case Management Program for Hepatitis C to save
federal and state government resources in this era of fiscal austerity.
PSI intends to do this by:
--Assisting Medicaid eligible patients affected with the Hepatitis C
virus (HCV) by transitioning these patients into the private
insurance market. According to our research, 10 percent to 15
percent of the Hepatitis C patient population on Medicaid who
are responding positively to the Pegylated Alpha Interferon/
Ribavirin Combination treatment regimen can return to work. A
positive response to the regimen can be defined as having such
a low amount of the virus in your cell system that the viral
load is undetectable. This portion of the population can re-
enter the workforce, thus returning to the status of taxpayer
and transition off the Medicaid roles.
--PSI will use a portion of the federal funds to purchase health
insurance premiums through State High-Risk policies, Guaranteed
Issue policies, and/or Open Enrollment policies for these
patients thus freeing up Medicaid dollars. These patients will
then be eligible to re-enter the workforce, and ultimately be
covered by an employer funded benefits package.
--Assisting the segment of the Hepatitis C patient population not
eligible for Medicaid, such as those patients enrolled in the
Medicare program, state assistance programs, as well as those
patients underinsured or uninsured.
--PSI can assist patients on Medicare by satisfying the co-payment
for the expensive, but life-altering treatment regiments.
--PSI can assist those patients receiving treatments through state
assistance programs by transitioning them into the private
insurance market.
--PSI can assist those patients who are uninsured and underinsured
by transitioning them into the private insurance market.
Over the last 9 years, PSI has proven that as an organization it
can be an effective steward of taxpayer's dollars. For a $1 million
investment by the federal government, PSI believes it can assist 1,200
to 1,500 patients. This investment could have the potential once fully
implemented to save the federal and state governments $10 million a
year.
Is your project a labor, health and human services, or education
request?
Health and Human Services
Within the Labor, Health and Human Services, Education Appropriations
Bill, the specific account within which funding is sought
Centers for Medicare and Medicaid Services (CMS): Research,
Demonstration and Evaluation Program.
Amount Requested
$1,000,000 for fiscal year 2006; $1,000,000 for fiscal year 2007;
$1,000,000 for fiscal year 2008.
How, specifically the federal funds will be spent, if obtained?
PSI asks Congress to establish a demonstration project through the
Department of Health and Human Services, Centers for Medicare and
Medicaid Services, which will assist Medicare and Medicaid eligible
individuals, who are infected with the Hepatitis C virus (HCV) and
desiring assistance, to identify and subsidize individual health
insurance policies. By providing premium and co-payment assistance, PSI
will save federal Medicare and Medicaid dollars.
PSI will begin the Medical Insurance and Co-payment Assistance
Management Program for Hepatitis C by the Summer of 2005.
Federal funding history of the organization
This is the first year that Patient Services Incorporated has made
a federal funding request.
List the amount state, local and private funds being used to support
the project. Indicate the proposed federal share of the project
PSI is in the final stages of development of a co-payment
assistance program with private sector industry. The industry support
will provide PSI with funds to develop a disease management program for
patients infected with Hepatitis C. This program would provide PSI with
key funds to launch this pilot program, which would provide pharmacy
co-payment assistance for the treatment regiment of Hepatitis C.
The private funds provided to PSI will initially assist 100
patients nationwide. PSI will also continue to reach out to other
manufacturers of Hepatitis C treatments for further development of this
program. The infusion of federal resources will assist in developing
the PSI Medical Insurance and Co-payment Assistance Case Management
Program for Hepatitis C into a more comprehensive program.
Proposed federal share: $1 million per year, for 3 years.
Report language requested
Recommend Report Language Centers for Medicare and Medicaid
Services, Program Management of the Medicare and Medicaid Research,
Demonstration and Evaluation program.
The committee has included $1,000,000 for a demonstration project/
pilot program with Patient Services Incorporated of Midlothian,
Virginia to save federal health care costs by subsidizing private
health insurance coverage for individuals suffering from the Hepatitis
C virus (HCV). The committee requests a report on the results of this
unique and potentially cost-saving program.
Members of Congress are you working with on this request
Senator John Warner (R-VA) and Senator George Allen (R-VA).
Please share any additional information you deem important
Currently there is authorization for programs such as PSI's
proposal under the following bills:
(1) Centers for Medicare and Medicaid Research, Demonstration and
Evaluation Program is an existing, statutory program.
(2) The Medicare Modernization Act authorizes demonstration
projects for innovative programs to reduce federal health care costs,
and for chronic care improvement pilot projects.
Pertinent background information and justification for this
appropriations request:
Patient Services Incorporated Demonstration Project/Pilot Program:
Covering the Uninsured with Chronic and Catastrophic Illness
PSI is a national, non-profit organization committed to supporting
people with specific chronic illnesses and conditions by locating and
securing solutions with health insurance by paying health insurance
premiums and pharmacy co-payments in order to help improve their
quality of life. PSI's vision for the future is to become the premier
national non-profit organization in developing strategies and programs
through collaboration with federal and state governments, corporations
and individuals to address gaps in public and private health care
coverage.
PSI asks Congress to establish a demonstration project through the
Department of Health and Human Services, Centers for Medicare and
Medicaid Services, which will assist Medicare and Medicaid eligible
individuals, who are infected with the Hepatitis C virus (HCV) and
desiring assistance, to identify and subsidize individual health
insurance policies. By providing premium and co-payment assistance, PSI
will save federal Medicare and Medicaid dollars.
Background on PSI
Founded in 1989, PSI has spent the last fifteen years working with
patients from the chronic disease community. PSI currently assists
patients nationwide with the expensive costs of seventeen chronic
illnesses and acute conditions. A few examples are those with
Hemophilia, Alpha 1, Rheumatoid Arthritis, Crohn's Disease, Immune
Deficiencies, Psoriasis and Multiple Sclerosis. PSI saves families from
becoming financially devastated when a member is diagnosed with an
expensive chronic illness. The PSI model provides the means for
patients to become insured and have choices of treatments and
providers.
Private contributors, foundations, and corporate sponsors donate
resources to PSI. PSI uses these resources to help families avoid
turning to government sponsored social service programs. Families are
offered assistance based upon the severity of their medical and
financial needs, which is determined through an application process, a
procedure that is unique to PSI. PSI has developed a sliding scale
formula specifically designed to capture the working middle class
person, providing the family with a safety net from financial ruin and
assuring a successful return to work outcome. PSI does this by working
with patients to gain access to insurance through State High Risk
Insurance Pools, Open Enrollment, and Guaranteed Issue health insurance
policies. PSI also assists patients in maintaining COBRA policies for
those who qualify. PSI is committed to working with the chronically ill
to ensure that they have the resources to meet their specific and
costly health care needs.
PSI is in the unique position of tackling head-on the acute problem
of locating and ultimately paying for health insurance for the
uninsured population in the United States. Currently the United States
Census Bureau reports that there are over 44 million Americans who have
no health insurance for a time period of one year or more. However,
over 80 million Americans are without health insurance for some period
of time during any given year. PSI can assist individuals in both
categories. Since 1996, PSI also has successfully worked with State
Health Department Title V programs, such as, Children With Special
Health Care Needs and Childrens Rehabilitative Services (Medicaid). The
PSI model has saved the Commonwealth of Virginia over $12 million since
1996 and the state of Kentucky over $5 million in program costs since
2000.
In 2002, the U.S. Department of Health and Human Services' Office
of the Inspector General issued a positive opinion endorsing the PSI
model of premium assistance and sanctioning the co-payment assistance
for Medicare patients. The Centers for Medicare and Medicaid Services
acknowledged in its recent 641 Replacement Drug Demonstration Project
that charitable organizations, like PSI, can assist patients with the
out of pocket expenses associated with certain replacement drugs.
It is no secret the chronic illnesses are both financially and
emotionally draining for patients and families to cope with. Treating
chronic conditions also accounts for the largest percentage of spending
within the Medicare budget. The costliest five percent of Medicare
beneficiaries account for about half of all Medicare spending each
year. PSI has developed programs to help many of the families afflicted
by these costly diseases; their Medical Insurance and Co-payment
Assistance Case Management Program for Hepatitis C holds a great deal
of promise for individuals and families who are affected by this virus
and the accompanying complications.
Hepatitis C
The Hepatitis C virus (HCV) is a disease of the liver that has
potentially fatal outcomes. In the majority of Hepatitis C cases,
infection becomes chronic and slowly damages the liver over many years.
During this time, the liver damage can lead to cirrhosis (scarring) of
the liver, end-stage liver disease, and liver cancer. In the United
States, Hepatitis C affects close to 4 million people, making the
disease more prevalent than HIV/AIDS infection. The costs for providing
care for patients with HCV-associated liver disease in the United
States are estimated to range from $758 million to several billion
dollars annually. Hepatitis C infections are expected to increase to
10.8 million Americans in the next decade, leading to a major drain on
government health resources and increased health costs.
Hepatitis C can be treated; early diagnosis and treatment are
crucial to being able to control the progression of the disease and
reduce the chances of further liver damage. There are instances where
the treatment has taken a protracted time to show any positive results
in lowering the viral load of patients, and in certain cases the
treatment may not change the progression of the disorder. Currently,
the National Institutes of Health (NIH) recommends that Hepatitis C
patients receive pegylated alpha interferon treatment in combination
with the antiviral drug, Ribavirin. Three different agents are used in
this treatment approach:
--Alpha Interferons.--A protein made naturally by your body to boost
your immune system and to regulate other cell functions. All of
the currently approved treatments for chronic Hepatitis C
include some form of natural or synthetic alpha interferon.
--Pegylated Alpha Interferon.--Made by attaching a large water-
soluble molecule call polyethylene glycol (PEG) to the alpha
interferon molecule. These modified alpha interferons stay in
the body longer and studies show they are more effective in
producing a sustained viral response in patients with chronic
Hepatitis C.
--Ribavirin.--An antiviral drug that is used with manufactured forms
of alpha interferon for the treatment of chronic Hepatitis C.
Ribravirin by itself has not been shown to be effective against
the Hepatitis C virus, but in combination with forms of alpha
interferon is a much more successful treatment than alpha
interferon alone.
The Pegylated Alpha Interferon/Ribavirin Combination treatment
regimen is expensive; according to the 2003 Red Book Update, the costs
range from $24,000 to $48,000 for the drug alone. These costs do not
include fees for administering the drugs, laboratory visits, and
medical tests associated with HCV. Hepatitis C is an expensive chronic
illness; PSI is able to work with the federal government to assist this
community to ensure that it receives quality care in an economically
efficient way.
______
Prepared Statement of the Society for Neuroscience
INTRODUCTION
Mr. Chairman and members of the subcommittee, I am Dr. Carol Barnes
of the University of Arizona and President of the Society for
Neuroscience (SfN). I am here today in my capacity as the President of
SfN to urge your support of biomedical research. SfN represents the
entire range of scientific research endeavors aimed at understanding
the nervous system and translating this knowledge to the treatment and
prevention of nervous system disorders. It fosters the broad
interdisciplinarity of the field, which uses multiple perspectives to
study the nervous system of organisms ranging from invertebrates to
humans across various stages of development, maturation, and aging.
WHAT IS THE SOCIETY FOR NEUROSCIENCE?
The Society for Neuroscience is a nonprofit membership organization
of basic scientists and physicians who study the brain and nervous
system. Neuroscience includes the study of brain development, sensation
and perception, learning and memory, movement, sleep, stress, aging,
and neurological and psychiatric disorders. It also includes the
molecules, cells, and genes responsible for nervous system functioning
and human behavior.
The 36,000 members of SfN include basic researchers studying the
many neuroscience disciplines and clinicians specializing in neurology,
neurosurgery, psychiatry, ophthalmology, and related fields. In 1970,
neuroscience barely existed as a separate discipline. Today, there are
more than 300 training programs in neuroscience alone. The field of
neuroscience has made startling discoveries that have transformed our
understanding of the healthy brain and helped to deliver treatments of
disorders affecting millions.
NATIONAL INSTITUTES OF HEALTH'S NEUROSCIENCE BLUEPRINT
The NIH Neuroscience Blueprint is a framework to enhance
cooperation among 15 NIH Institutes and Centers that support research
on the nervous system. Over the past 10 years, driven by the science,
the NIH neuroscience Institutes and Centers have increasingly joined
forces through initiatives and working groups focused on specific
disorders. The Blueprint builds on this foundation, making
collaboration an everyday part of how the NIH does business in
neuroscience. By pooling resources and expertise, the Blueprint can
take advantage of economies of scale, confront challenges too large for
any single institute, and develop research tools and infrastructure
that will serve the entire neuroscience community.
Last year, the Blueprint participants developed a set of
initiatives focused on tools, resources, and training with immediate
impact because they would build on existing programs. These initiatives
include an inventory of neuroscience tools funded by the NIH and other
government agencies, enhancement of training in the neurobiology of
disease for basic neuroscientists, and expansion of ongoing gene
expression database efforts, such as the Gene Expression Nervous System
Atlas (GENSAT).
Advances in the neurosciences and the emergence of powerful new
technologies offer many opportunities for Blueprint activities that
will enhance the effectiveness and efficiency of neuroscience research.
Blueprint initiatives for fiscal year 2006 will include systematic
development of genetically engineered mouse strains of critical
importance to research on the nervous system and its diseases and
training in critical cross cutting areas such as neuroimaging and
computational biology.
Several of the most common causes of death and disability, as well
as hundreds of rare disorders, affect the brain, spinal cord, or nerve
cells in the eye, ear, or elsewhere in the body. The vast array of
nervous system disorders encompasses mental illness, neurological
disease, drug and alcohol abuse, chronic pain conditions, developmental
disorders, and dementias of aging. Numerous problems of hearing,
vision, and other senses also include a brain component, and are
serious health issues.
In fiscal year 2006, NIH intends to allocate $26 million, with $14
million contributed by collaborating institutes and centers, for
Blueprint initiatives as follows:
--Neuromouse Project.--developing genetically engineered mouse
strains specifically for nervous system disease research;
--Cross-Institute Neuroscience Training Programs.--training in
critical cross-cutting areas such as neuroimaging and
computational biology;
--Neuroscience Core Grants.--supporting specialized,
interdisciplinary ``core'' centers that might focus on areas
such as animal models, cell culture, computer modeling, DNA
sequencing, drug screening, gene vectors, imaging, microarrays,
molecular biology, or proteomics and their applications to
neuroscience research;
--Translation of Discoveries.--accelerating the translation of basic
neuroscience discoveries into better ways to treat and prevent
nervous system diseases; and
--Analytical Methods and Conceptual Models.--spurring the development
of new analytical methods and conceptual models to study
disease and allow for increased coordination among public
education and outreach campaigns involving the brain and
nervous system.
ACCOMPLISHMENTS
The Society for Neuroscience would like to thank you for your past
support. In the last 10 years, funding from the NIH and the Department
of Veterans Affairs has helped scientists make great progress in
helping people in many areas, including:
1. Bipolar disorder.--Also known as manic depression, bipolar
disorder is a serious brain disease that causes extreme mood swings,
from intense feelings of euphoria (mania) to deep depression. Past
funding from NIH and the Department of Veterans Affairs has helped
scientists make great progress in understanding bipolar disorders and,
thus, in diagnosing and treating the illness. Using the latest brain
imaging technologies, scientists have also discovered that brain
function and structure in people with bipolar disorder differs markedly
from that in people without the illness. Researchers have found a
significant decrease in the size of the amygdala, a part of the brain
that governs emotions, in people with bipolar disorder. Other studies
have found a decrease in the density of gray matter in the brains of
people with bipolar disorder. These and other exciting new findings are
helping to pave the way for the design of new drugs that directly
target specific genes or areas of the brain.
2. Alzheimer's Disease & Normal Aging.--Alzheimer's disease, one of
the most frightening memory-robbing disorders, hampers the lives of
some 4 to 5 million older Americans, costing the United States at least
$100 billion in medical care and lost productivity each year.
Fortunately, NIH-funded research has helped to generate new treatments
that can aid memory loss. These medications slow memory deterioration
in some patients and allow others to resume normal lives. Additional
gains can and must be made in the field of memory research in order to
benefit a wider range of people, and to reduce the financial burden of
care. Recent studies on animal models suggest that the outlook could
improve with treatments that target brain mechanisms to enhance memory.
Additionally, research into Alzheimer's disease and its effects on
memory have also led to important advances in how memory can be
optimized in normal aging. This would clearly benefit the remaining
millions of Americans who are looking toward successful aging.
3. Depression & Heart Disease.--Depression is a biologically based
brain disorder that affects about 10 percent of Americans over the age
of 18. Depressed people feel intensely sad and worthless and have a
diminished sense of emotional well-being. Among other diseases such as
alcoholism and stroke, people with depression have an increased risk
for heart disease, particularly coronary artery disease. In otherwise
healthy people, depression doubles the risk for coronary artery
disease. Furthermore, for those with coronary artery disease, there is
evidence that depression influences outcomes, particularly mortality,
following a heart attack. Additionally, for those undergoing coronary
artery bypass grafting, there is increasing evidence that depression is
associated with poorer outcomes. Studies from Johns Hopkins University
reveal that patients with severe depression are up to five times more
likely to have poorer outcomes such as the return of chest pain, heart
attacks, or death. Despite much progress in understanding the biology
of depression in the past decade, much remains to be done. The
mechanisms of the interaction between depression and outcomes with
cardiac disease are not clear. Nor is it known if treatment of
depression, even mild depression, would lead to more favorable outcomes
for those with cardiac problems. NIH-funded research might help us
answer these complicated questions in order to save lives and money.
THE AMERICAN BRAIN COALITION
Last year, the Society for Neuroscience, along with the American
Academy of Neurology, started the American Brain Coalition (ABC). ABC
is a nonprofit organization that brings together patients with
disabling brain disorders, the families of those that suffer, and the
professionals that research and treat diseases of the brain. The
mission of the ABC is to reduce the burden of brain disorders, and
advance the understanding of the brain.
Because the brain is the center of human existence and the most
complex living structure known, ABC advocates for collaboration among
researchers and doctors who treat disorders of the brain. As seen with
depression and heart disease, the brain plays a vital role in
conditions once believed to be unrelated to the brain. It is only
through more research that we will begin to further understand,
prevent, and treat neurological and psychiatric diseases.
FISCAL YEAR 2006 BUDGET REQUEST
The Society for Neuroscience supports the Ad Hoc Group for Medical
Research Funding request of a 6 percent increase for NIH in fiscal year
2006. This will help NIH to carry out its Blueprint initiatives and
help people affected by neurological disorders lead healthier,
productive lives. Furthermore it will help sustain the infrastructure
for innovative discoveries necessary to compete as a worldwide leader
in biomedical research.
The request is based on the following information:
--$1 billion is needed to cover biomedical research inflation, which
is projected to be 3.5 percent;
--$560 million is needed to replace the evaluation set-aside (an
amount taken from each institute), which this year amounted to
2.4 percent (it used to be 1 percent); and
--The total number of research project grants (RPGs) is declining by
402 from what it was in fiscal year 2005.
Mr. Chairman, thank you for the opportunity to testify before this
committee.
______
Prepared Statement of The Humane Society of the United States
On behalf of The Humane Society of the United States (HSUS) and our
more than 8.6 million supporters nationwide, we appreciate the
opportunity to provide testimony on our top funding priorities for the
Labor, Health and Human Services, Education and Related Agencies
Subcommittee in fiscal year 2006.
INTERAGENCY COORDINATING COMMITTEE ON THE VALIDATION OF ALTERNATIVE
METHODS (ICCVAM)
We were very pleased that Congress enacted Public Law 106-545 by
unanimous voice vote in both chambers in 2000. This legislation,
introduced by Senator Mike DeWine (R-OH) and Representatives Ken
Calvert (R-CA) and Tom Lantos (D-CA), strengthened and made permanent
the Interagency Coordinating Committee on the Validation of Alternative
Methods (ICCVAM). The statute has already begun to enhance the federal
government's capacity to evaluate and adopt chemical testing methods
that are often faster, cheaper, and more scientifically sophisticated
than current methods, as well as more responsive to the public's
concerns about the welfare of animals used in toxicity testing. Public
Law 106-545 has streamlined the process by which these better methods
are validated and assessed, and has eased institutional barriers within
federal agencies that discourage their use.
ICCVAM performs an invaluable ``win-win'' function for regulatory
agencies and stakeholders in industry, public health, and animal
protection by assessing the suitability of new toxicological test
methods that have interagency application. These new (and newly
revised) methods include alternative methods that can limit animal use
or suffering in testing. After appropriate independent peer review of a
new test method, ICCVAM provides its assessment of the new test to the
federal agencies that regulate the particular endpoint that the test
measures. In turn, the federal agencies maintain their authority to
incorporate the validated test method as appropriate for the agencies'
regulatory mandates. This streamlined approach to assess the validation
status of new test methods has reduced the regulatory burden of
individual agencies, provided ``one-stop shopping'' for industry,
animal protection, and public health advocates to consider test
methods, and set uniform criteria for what constitutes a validated test
method.
ICCVAM arose from an initial mandate in the NIH Revitalization Act
of 1993 for the National Institute of Environmental Health Sciences
(NIEHS) to ``(a) establish criteria for the validation and regulatory
acceptance of alternative testing methods, and (b) recommend a process
through which scientifically validated alternative methods can be
accepted for regulatory use.'' In 1994, NIEHS established an ad hoc
ICCVAM to write a report that would recommend criteria and processes
for validation and regulatory acceptance of toxicological testing
methods that would be useful to federal agencies and the scientific
community. Through a series of public meetings, interested stakeholders
and agency representatives from 14 regulatory and research agencies
developed NIH Publication No. 97-3981, Validation and Regulatory
Acceptance of Toxicological Test Methods. This report has become the
``sound science'' guide for consideration of new test methods by the
federal agencies and interested stakeholders. After publication of the
report, the ad hoc ICCVAM moved to standing status under the NIEHS'
National Toxicology Program Interagency Center for the Evaluation of
Alternative Toxicological Methods (NICEATM). Representatives from
federal regulatory and research agencies have continued to meet, with
advice from NICEATM's Scientific Advisory Committee and independent
peer review committees, to assess the validation of new toxicological
test methods.
Since its inception, ICCVAM has conducted rigorous evaluations of
several test methods and has concluded that these methods are
scientifically valid, i.e., have been adequately validated, and are
acceptable for specific purposes. These methods include Corrositex,
Epiderm, Episkin, and Transcutaneous Epithelial Resistance assays for
assessing skin corrosivity; the 3T3 NRU Phototoxicity assay for
assessing phototoxicity; the Local Lymph Node Assay for assessing skin
sensitization; and the Up and Down Method and various cytotoxicity
assays for assessing acute systemic toxicity. In turn, the appropriate
regulatory agencies have incorporated these methods into their
regulatory practices.
The open public comment process, input by interested stakeholders,
and the continued commitment by various federal agencies have all
enhanced the ICCVAM process. Now, under Public Law 106-545, ICCVAM is
poised to go beyond its largely passive role of assessing the
validation status of test methods that have been developed and
validated by industry and others. ICCVAM should adopt a more proactive
role in developing and validating promising tests methods in
partnership with outside stakeholders, to ensure that a steady stream
of new test methods are available for review and adoption by the
federal government. Such a proactive stance and partnership with
stakeholders will enable the federal government to better harness the
potential of emerging technologies to meet the challenge of efficiently
testing large numbers of chemicals with minimal cost in terms of money
and animal lives. With a more proactive approach, ICCVAM could, for
example, explore the potential of investigator-initiated and small
business grant programs to further its mission.
Adequate funding should be provided for ICCVAM to put the resources
in place to ensure the federal government and industry have the best
available tools with which to assess the toxic properties of chemicals
in commerce. To accomplish this, we respectfully request an earmark of
$3.6 million for fiscal year 2006 and the following Committee Report
language:
``In order for the Interagency Coordinating Committee for the
Validation of Alternative Methods (ICCVAM) to carry out its
responsibilities under the ICCVAM Authorization Act of 2000, the
Committee strongly urges NIEHS to strengthen the resources provided to
ICCVAM for methods validation reviews in fiscal year 2006. ICCVAM and
NIEHS activities must include up-front validation study design,
execution, and review to ensure that new and revised test methods, non-
animal test methods, and alternative test methods (such as QSARs,
mechanistic screens, high throughput assays, and toxicogenomics) are
deemed scientifically valid before they are recommended or adopted for
use by federal agencies or used in implementing the National Toxicology
Program's Road Map and Vision for NTP's toxicology program in the 21st
century.''
PAIN AND DISTRESS RESEARCH
An estimated 40 percent of the National Institutes of Health (NIH)
budget--or currently more than $11 billion--is devoted to some aspect
of animal research. At this time, no funding is set aside specifically
for research into alternatives that reduce the amount of pain and
distress to which research animals are subjected, nor methods that
replace or reduce the use of vertebrate animals in research. NIH may
receive $28.8 billion in fiscal year 2006 if Congress fulfills the
President's budget request. Out of this funding, we seek $2.5 million
(0.009 percent) for research and development focused on identifying and
alleviating animal pain and distress. In addition to our request for a
specific funding amount, we also urge the Committee to specify in
report language that this research should be conducted in conjunction
with, or ``piggy-backed'' onto, ongoing research that already causes
pain and distress. Infliction of pain and distress on additional
animals is unnecessary, given the volume of existing research (we
estimate a minimum of 20-25 percent of all animal research) that is
believed to involve moderate to significant pain and/or distress.
The large extent to which animals are used in federally-funded
research underscores the importance of earmarking funds for pain and
distress research. NIH has a statutory mandate to conduct or support
research into alternative methods that produce less pain and distress
in animals. This was specified in the NIH Revitalization Act of 1993
regarding a plan for the use of animals in research. Earmarked funding
will assist NIH in meeting this mandate. Additionally, researchers
themselves often comment publicly at scientific meetings about the
urgent need for funding in order to properly understand and mitigate
pain and distress in research animals and to follow Animal Welfare Act
and Public Health Service policy requirements to minimize pain and
distress.
It is well known that uncontrolled, undetected, and unalleviated
pain and distress has adverse effects on animal welfare, which leads to
adverse effects on the quality of science. Ultimately, the lack of
information on pain and distress leads to misinterpretation of research
results that could result in harmful effects in human beings when pre-
clinical animal research results are applied to humans in clinical
trials.
A 2001 survey conducted by an independent polling firm indicates
that concern about animal pain and distress strongly influences public
opinion about animal research in general. Seventy-five percent of the
American public opposes research that causes severe animal pain and/or
distress, even when it is health-related. Despite this public concern,
NIH has failed to sponsor research and development aimed at determining
how to minimize animal suffering and distress in the laboratory.
During the past several years, our organization has been reviewing
institutional policies and practices with respect to pain and distress
in animal research. We have found that research institutions have
inconsistent policies due to the lack of information on this subject,
and that standards vary greatly from one institution to another. The
federal standard for determining laboratory animal pain specifies that,
if a procedure causes pain or distress to humans, it should be assumed
to cause pain and distress to animals. Furthermore, while human
experience can and should provide a useful guide in some cases, there
are others in which humans are never subjected to the conditions facing
laboratory animals. Information on pain and distress that animals
themselves actually experience is important.
Our nation takes pride in leading the world in biomedical research,
yet we lag behind many other countries in our efforts to minimize pain
and distress in animal subjects. For example, the United Kingdom,
Sweden, Switzerland, Germany, the Netherlands and the European Union
all have committed funds specifically for the ``three R's'' (replacing
the use of animals, reducing their use, and refining research
techniques to minimize animal suffering).
We urge the Committee to make this small investment of $2.5 million
to promote animal welfare and enhance the integrity of scientific
research. We also respectfully request this accompanying committee
report language:
``The Committee provides $2.5 million to support research and
development focused on improving methods for recognizing, assessing,
and alleviating pain and distress in research animals. No pain and
distress should be inflicted solely for the purpose of this initiative,
since the investigations can and should be conducted in conjunction
with ongoing research that is believed to involve pain and distress
under Government Principle IV of Public Health Service Policy, which
assumes that procedures that cause pain and distress in humans may
cause pain and distress in animals.''
Again, we appreciate the opportunity to share our views and top
priorities for the Labor, Health and Human Services, Education and
Related Agencies Appropriation Act of fiscal year 2006. We hope the
Committee will be able to accommodate these modest requests that will
benefit animals, enhance effectiveness of toxicological testing, and
improve the quality of research. Thank you for your consideration.
______
Prepared Statement of Voices for National Service
Mr. Chairman and Members of the Subcommittee, Voices for National
Service, formerly known as the Save AmeriCorps Coalition, is a
coalition of community-based organizations, faith-based groups, state
commissions, private sector partners, institutions of higher education,
and others interested in promoting national service through AmeriCorps
and other vehicles. We look forward to working with you to strengthen
AmeriCorps and national service as you oversee the entire budget of the
Corporation for National and Community Service for the first time.
In light of AmeriCorps 10th Anniversary, it is appropriate to
review some of the goals Congress set for AmeriCorps in 1993: ``to meet
the unmet human, educational, environmental and public safety needs of
the United States; to renew the ethic of civic responsibility and the
spirit of community throughout the United States; to expand educational
opportunity by rewarding individuals who participate in national
service with an increased ability to pursue higher education or job
training; to encourage citizens of the United States, regardless of
age, income, or disability, to engage in full-time or part-time
national service; and, to provide tangible benefits to the communities
in which national service is performed.''
We believe that those who do service through AmeriCorps, as part of
school or community-based service-learning, or senior volunteer
programs, through their churches synagogues and mosques, and community-
based organizations are part of one of the great currents of American
history: working with one's neighbor to build a better community and a
better nation. President Bush captured this theme when, in his State of
the Union Address in 2002, he said:
``My call tonight is for every American to commit at least 2
years--4,000 hours--over the rest of your lifetime to the service of
your neighbors and your nation. . . . Our country [also] needs citizens
working to rebuild our communities. We need mentors to love children,
especially children whose parents are in prison. And we need more
talented teachers in troubled schools.''
government sponsored service is deeply rooted in our history
It was almost a century ago that philosopher William James spoke of
service as ``the moral equivalent of war'' and said if there ``were a
conscription of the whole youthful population to form for a certain
number of years a part of the army enlisted against Nature, the
injustice would tend to be evened out . . . .''
Since that speech in 1906, Presidents from Franklin D. Roosevelt to
George W. Bush have proposed that Americans serve both here and abroad
to improve conditions for those who need support. They recognized that
serving made better citizens and better Americans, that government--in
conjunction with community-based institutions--has a role to play in
solving our most intractable problems and that service must be real,
not make-work.
In 1933, President Roosevelt spoke to Civilian Conservation Corps
(CCC) members in Warm Springs, Georgia and told them that ``You are
rendering a real service, not only to this community but to this part
of the State and the whole State. It is permanent work, it is work that
is going to be useful for a good many generations to come. That is why,
one reason why, the people of this country as a whole believe in the
Civilian Conservation Corps . . . .''
It is difficult to believe that nearly half a century has passed
since President Kennedy challenged a new generation by saying ``And so,
my fellow Americans: ask not what your country can do for you--ask what
you can do for your country.'' Kennedy's Peace Corps proposal included
many of the principles embodied in AmeriCorps:
``In establishing our Peace Corps we intend to make full use of the
resources and talents of private institutions and groups. Universities,
voluntary agencies, labor unions and industry will be asked to share in
this effort . . . making it clear that the responsibility for peace is
the responsibility of our entire society. . . . We will only send
abroad Americans who are wanted by the host country--who have a real
job to do--and who are qualified . . . . Programs will be developed
with care, and after full negotiation . . . . Life in the Peace Corps
will not be easy. There will be no salary and allowances will be at a
level sufficient only to maintain health and meet basic needs.''
NATIONAL SERVICE HAS BROAD BIPARTISAN SUPPORT
The roots of AmeriCorps are contained in national service
legislation enacted in 1990 and signed by President George H.W. Bush.
It reflected his belief, articulated in his Inaugural address, that
``America is never wholly herself unless she is engaged in high moral
principle. We as a people have such a purpose today. It is to make
kinder the face of the Nation and gentler the face of the world. My
friends, we have work to do.'' To address these issues, he said ``we
will do the wisest thing of all: We will turn to the only resource we
have that in times of need always grows--the goodness and the courage
of the American people.'' He called for:
``A new engagement in the lives of others, a new activism, hands-on
and involved, that gets the job done. We must bring in the generations,
harnessing the unused talent of the elderly and the unfocused energy of
the young. For not only leadership is passed from generation to
generation, but so is stewardship. And the generation born after the
Second World War has come of age. The old ideas are new again because
they are not old, they are timeless: duty, sacrifice, commitment, and a
patriotism that finds its expression in taking part and pitching in.''
Exactly seven years less one day before September 11, President
Clinton swore in the first class of AmeriCorps members. Reflecting many
of the themes articulated by President Bush, he told them that
``Service is never a simple act, it's about sacrifice for others and
about accomplishment for ourselves, about reaching out, one person to
another, about all our choices gathered together as a country to reach
across all our divides. It's about you and me and all of us together--
who we are as individuals and what we are as a nation. Service is a
spark to rekindle the spirit of democracy in an age of uncertainty.''
Like Presidents Roosevelt, Kennedy, and Bush, President Clinton
also understood that each generation owes something to the nation for
what it has received as well as to those who follow:
``And your generation is no exception. We look at you now. And we
know you are no generation of slackers. Instead you are a generation of
doers. And you want to give something back to the country that has
given so much to you. The only limit to our future is what we're
willing to demand of ourselves today. Generations of Americans before
us have done the groundwork. Now, it falls to all of us to build on
their foundations.''
Two years ago, AmeriCorps was in crisis; its very survival in
doubt. At that time, virtually every governor, more than 150 mayors,
hundreds of university presidents, and corporate and civic leaders
publicly recognized the good that AmeriCorps had accomplished since its
creation 10 years ago. More than 100 editorials in large and small
newspapers throughout the nation provided ample evidence of how
AmeriCorps members improved their communities.
President George W. Bush's support, important bipartisan
legislative initiatives to improve the management of the Corporation
for National and Community Service, installation of a new leadership
team, and the rulemaking process still underway not only helped to save
AmeriCorps but to remind us that service is the responsibility of all
Americans.
STRENGTHENING COMMUNITIES
AmeriCorps members serve in more than 900 local and state nonprofit
organizations, public agencies, and faith-based organizations funded by
the Corporation for National and Community Service through both state
commissions as well as national nonprofit AmeriCorps programs including
Teach for America, the National Association of Community Health
Centers, the Red Cross, Habitat for Humanity, City Year, Public Allies,
the National Association of Service and Conservation Corps, Jumpstart
for Young Children, the Sisters of Notre Dame, and the Experience
Corps.
They serve to address problems within four broad categories:
``unmet human, educational, environmental, or public safety needs.''
Communities identify their needs and choose the model that is most
appropriate to meeting those needs. This is a bottom up, not a top-down
program.
AmeriCorps members also help strengthen Homeland Security and
prevent or mitigate the effects of natural disasters. Recently,
AmeriCorps members from Minnesota and Washington State joined
colleagues serving in Florida to bring a measure of relief to victims
of devastating hurricanes. They helped mobilize the largest volunteer
disaster response in American history, repaired damaged homes, and
distributed food and water to victims and community volunteers. Indeed,
since September 11, 2001 the AmeriCorps program has expanded its work
in public safety, public health, disaster relief, and homeland
security.
AmeriCorps members teach in underserved schools, tutor and mentor
youth including the children of prisoners, run after-school programs,
build affordable housing, provide public health services, prevent
forest fires and do disaster relief, run after-school programs, and
help communities respond to disasters. Hundreds of AmeriCorps state
programs clean rivers and streams, enrich after school programs,
support local law enforcement by providing meaningful alternatives to
gangs, deliver services to the elderly, and meet other needs defined by
the communities in which they serve.
This year, for example, AmeriCorps members are serving more than 2
million children and youth, providing valuable resources to reach the
President's goal of having all children able to read by third grade.
They are also helping to recruit and train more than 600,000 community
volunteers.
AmeriCorps members leverage community resources as well as perform
direct service. In fiscal year 2003, AmeriCorps members recruited more
than 529,000 community volunteers an increase of almost 275,000 (from
the previous year when the Corporation stopped recruiting new members
and new volunteers because of its self-imposed recruitment freeze).
Last year, AmeriCorps programs generated more than $165 million from
non-Corporation partners, $70 million more than in the previous year.
ACCOMPLISHMENTS
According to the State Profiles and Performance Report 2002-2003
published by the Corporation for National and Community Service
(December 2004), examples of what AmeriCorps members accomplished
include (but are not limited to):
--In Alaska, members tutored almost 6,000 students in grades 1
through 12 and assessed 485 homes for energy efficiency.
--In Florida, members recruited 2,000 community volunteers to provide
education services, maintained and expanded 200 acres of
habitat for threatened and endangered species, and built 40
homes for low-income families.
--In Georgia, almost 7,500 homeless individuals received referrals to
permanent or transitional housing.
--In Indiana, 2,400 juveniles participated in career development
activities for offenders or ex-offenders.
--In Iowa, more than 4,800 elementary and middle students received
tutoring and mentoring support, and 32,000 received education
and training about the environment.
--In Kentucky, members staged eight forums to educate more than 1,000
at-risk elderly about home safety and conducted 265 Home Safety
Assessments for seniors.
--In Maine, members made 600 presentations on disaster preparedness,
benefiting more than 36,000 people and almost 1,300 people
participated in after-school activities designed to reduce
violence in public housing.
--In Maryland, members removed 453 tons of trash, improving the
quality of storm water run-off into the Chesapeake Bay and
1,900 homeless families received food, clothing, or furniture.
--In Minnesota, members constructed 151 housing units for low income
seniors or people with disabilities, planted almost 142,000
trees, and conserved more than 10,000 acres of habitat and
land.
--In Mississippi, members trained 715 people with disabilities in
life skills, helped train mentally, or developmentally,
disabled adults for employment, and mentored 1,100 low income
and underachieving middle school students.
--In Montana, members constructed 54 miles of fence to protect wild-
or park lands, maintained 309 miles of trails, roads, and other
public areas, and increased access to technology for more than
1,100 youth, parents, and members of the community.
--In Nevada, 3,200 students in grades 1 through 12 received tutoring,
577 homeless veterans received employment-related counseling,
and almost 1,000 women benefited from anti-victimization
counseling and workshops on preventing domestic violence.
--In New Mexico, almost 24,400 people participated in after-school
sports and violence avoidance activities, 400 adults received
instruction in basic skills development and GED training, and
138 homeless families found homes.
--In New York, members transported 1,000 children to medical
appointments, delivered meals and snacks to about 58,000
children and seniors, and provided literacy activities to
almost 17,000 children.
--In Ohio, members trained more than 9,000 youth in conflict
resolution, built repaired, or rehabilitated 364 housing units,
and provided educational support services to 1,500 students
during the summer months.
--In Oregon, 7,000 students benefited from updating high school
Career Centers with college, military, apprenticeship, and
trade school information, planted almost 5,000 trees, and grew
and distributed more than 900 pounds of produce.
--In Pennsylvania, members tutored almost 14,600 elementary and high
school students and more than 6,800 citizens received either
needs assessment or support in the areas of domestic violence,
foster care, mental health, and housing for homeless veterans.
--In Tennessee, more than 900 people received access to health care,
almost 200 children had their immunizations ensured, and more
than 1,300 senior women received informational materials about
breast cancer.
--In Washington, almost 37,000 students benefited from out of class
enrichment activities like field trips, about 6,600 peer tutors
were recruited, and more than 19 miles of rivers, river banks,
beaches, and fish habitat were restored or conserved,
benefiting local salmon runs.
--In Wisconsin, members organized or packed 290 tons of food to be
distributed to community agencies and provided after-school
tutoring or mentoring services to more than 1,200 students.
--In West Virginia, more than 3,200 children received tutoring in a
six-week summer literacy program, helping to realize an average
four month gain in literacy skills.
According to the Corporation's National Performance Benchmarking
Survey, ``57 percent of organizations' AmeriCorps partners reported
that AmeriCorps members `considerably' helped them increase their
involvement in partnerships and coalitions. (29 percent reported
`moderately' helped).'' Also, three quarters of grantees said that
``AmeriCorps had increased `by a considerable amount' the number of end
beneficiaries served.'' About ``83 percent of grantees reported that
AmeriCorps members helped their organization either `considerably' (53
percent) or `moderately' (30 percent) in leveraging additional
volunteers.'' And, ``more than 75 percent of organizations receiving
disaster and emergency readiness and preparedness training from
AmeriCorps programs have become better prepared by conducting emergency
drills, changing organization operations, or preparing emergency
kits.''
With your support, in the next fiscal year, approximately 40,000
AmeriCorps members will provide tutoring to students, help operate
after-school programs, increase Americans' access to health care, and
provide support for families in crisis. In addition, more than 5,000
children of prisoners will receive services provided by AmeriCorps
members.
In 2004, the Corporation for National and Community Service
celebrated its tenth anniversary. In the last decade, more than 400,000
young Americans dedicated themselves to either full or part-time
service through AmeriCorps to improve their communities and their
country. At the same time, AmeriCorps members earned Education Awards
worth more than $1 billion.
SERVICE CHANGES THOSE WHO SERVE
Serving in AmeriCorps also changes those who serve. According to
the recent study conducted by Abt Associates ``Serving Country and
Community: A Longitudinal Study of Service in AmeriCorps''
participation in AmeriCorps ``resulted in statistically significant
positive impacts on members' connection to community, participation in
community-based activities, and personal growth through service. While
AmeriCorps members increased their level of civic engagement . . .
scores for comparison group members typically showed little or no
change. . . .'' ``Additionally, there was a positive and significant
effect of AmeriCorps participation on volunteering for members without
prior volunteering experience. These results are important because they
reflect the capacity of AmeriCorps to strengthen existing beliefs in
and commitments to civic engagement and community service, and to
awaken new ones.''
The Abt study also reported that service in AmeriCorps ``had a
meaningful impact on both attitudinal and behavioral employment
outcomes.'' It increased ``the work skills of AmeriCorps members'' and
motivated ``members to choose public service careers, such as teaching,
social work, and military service.''
Thus, AmeriCorps proves its value everyday in communities across
the country and by changing the lives of AmeriCorps members.
THE FISCAL YEAR 2006 REQUEST
We are hopeful that under your leadership local communities
throughout the nation will continue to be served by as many as 75,000
AmeriCorps members. At the same time, we want to make clear that we are
as committed to the quality of the service as to reaching a specific
number of AmeriCorps members.
We very much appreciate the increase in funding that Congress
provided in fiscal year 2004 to save AmeriCorps. It must be noted,
however, that funding for AmeriCorps grants has declined from the
fiscal year 2004 enacted high of $312 million to the proposed $275
million, a cut of more than 10 percent. At the same time funding for
the Trust has increased from $129 to a proposed $146 million.
The Voices for National Service Coalition believes that it will
require $442 million to achieve the number of AmeriCorps members
proposed by the Corporation for National and Community (75,000) while
maintaining the historical balance between full-time, part-time, and
Education award only AmeriCorps members. To sustain this level of
service, we urge you to fund AmeriCorps at the level proposed by
President Bush in his fiscal year 2005 budget. We are very concerned
that with operating costs increasing, recruiting the same number of
AmeriCorps members with $20 million fewer dollars than the President
proposed just last year may force the Corporation to make programmatic
compromises that will undermine the historic nature and fundamental
character of AmeriCorps. While we support the Corporation's desire to
increase the number of ``effective, lower cost programs, such as
professional and teacher corps'' we remain convinced that
responsiveness to local needs requires the Corporation to support a mix
of higher, as well as lower, cost programs.
We also want to call the Committee's attention to two other
elements of the Corporation's request. First, we support the
Corporation's proposal to eliminate the cap on National Direct grants.
We share its concern that ``capping funding for National Direct grants
may prevent [it] from supporting outstanding service programs.''
Second, we are concerned about the Corporation's failure to seek funds
for the Challenge Grant program. Challenge grants promote competition
and are an important tool which programs can use to leverage additional
private sector funds. If the Corporation truly wants to achieve program
sustainability by reducing dependence on federal grants, it ought to
increase Challenge Grant funds rather than eliminate them. The response
to Challenge Grants has been overwhelming and we believe the program's
success justifies its continuation.
PROMOTING QUALITY AND INCREASING EFFICIENCY
As you begin your difficult work this year, Voices for National
Service urges you to consider the following themes that will further
increase the Corporation's effectiveness and meet its goal of ``put
[ting] the customer first'':
1. Education Award Only slots should be a tool for state
flexibility and cost-effectiveness. They should not become a way to
increase the number of AmeriCorps members ``on the cheap.'' We believe
that the current ratio between full- and part-time members and
recipients of Education Awards should be maintained and that no more
than 40 percent of the AmeriCorps portfolio should be allocated to
Education Award Only programs. This will allow states to reduce cost
per member, and be responsive to both local resources and local needs.
2. The Corporation must continue to affirm its commitment to
diversity of AmeriCorps members and be sensitive to geographic
diversity as well as racial, ethnic, and socio-economic diversity.
Corporation policy should reflect an understanding of the difficulties
that programs in rural areas and inner-cities have in recruiting
private sector and philanthropic dollars and the fact that programs
whose enrollment focus is on low-income, out of school and minority
young people are likely to have greater difficulty recruiting and
retaining members than programs that recruit more affluent members.
3. The Re-fill Rule should be fully restored. While we appreciate
the Corporation's effort to reintroduce its slot refill policy, the
present one-to-one, one-time-only policy is not sufficient to ensure
that programs can meet local needs. AmeriCorps programs that enroll
significant numbers of economically and educationally disadvantaged
corps members are likely to experience higher rates of attrition and
lower rates of retention. Reverting to its prior practice of allowing
programs to completely re-fill vacated slots at any time during the
year would allow greater participation in AmeriCorps, encourage
participants with a broad array of backgrounds to participate, and
ultimately allow programs--and AmeriCorps as a whole--to provide
deserving people, often highly disadvantaged, the opportunity to pursue
their educational goals.
CONCLUSION
For the last 70 years, Presidents of both parties, and their
Congressional champions, have recognized that service programs with
government support, the active support of community-based
organizations, faith-based institutions, and the private sector can
play an important role in strengthening communities, teaching the
virtues of civic engagement, and strengthening the bonds that connect
us as a people. Service is not only an effective strategy for attacking
our problems, it is a way to remind Americans of all ages that we have
a responsibility to give something back to our country.
We believe that AmeriCorps has made substantial progress in meeting
these ambitious goals and look forward to working with you to improve
the lives of all Americans through service.
Thank you for the opportunity to provide this testimony.
______
NATIONAL INSTITUTES OF HEALTH
Prepared Statement of the Alpha-1 Foundation
SUMMARY OF RECOMMENDATIONS
The Alpha-1 Foundation requests an allocation in the budget to
enable the CDC, National Center for Birth Defects and Developmental
Disabilities to implement a national targeted Alpha-1 detection
program. The Foundation recommends that CDC receive $2 million in
fiscal year 2006 for implementation.
The Foundation recommends that NHLBI enhance its portfolio of
research and education on the fourth leading cause of death in the
United States, Chronic Obstructive Pulmonary Disease (COPD), including
genetic risk factors such as Alpha-1 Antitrypsin Deficiency.
The Foundation commends NIH on the roadmap and recommends that
NHLBI, NIDDK, NHGRI, NIEHS, and other institutes establish an Alpha-1
inter-institute coordinating committee to facilitate collaboration on
this genetic lung and liver disease.
The Foundation encourages HRSA to collect additional data to
evaluate the impact of the new lung transplant organ allocation system
being implemented by the Organ Procurement and Transplantation Network/
United Network for Organ Sharing.
The Foundation supports the request of the Ad Hoc Group for Medical
Research Funding for a $30 billion appropriation for NIH in fiscal
2006.
Mr. Chairman and members of the Subcommittee thank you for the
opportunity to submit testimony for the record on behalf of the Alpha-1
Foundation.
THE ALPHA-1 FOUNDATION
The Alpha-1 Foundation is a national not-for-profit organization
dedicated to providing the leadership and resources that will result in
increased research, improved health, worldwide detection and a cure for
Alpha-1 Antitrypsin (Alpha-1) Deficiency. The Foundation has built the
research infrastructure with private investment, funding over
$15,000,000 in grants from basic to social science, establishing a
national patient registry, tissue and DNA bank, translational
laboratory, assisting in fast track development of new therapeutics,
and stimulating the involvement of the scientific community. The
Foundation has invested the resources to support clinical research
which follows the roadmap established by the NIH; uniquely positioning
it for a perfect private public partnership. There is a lack of
awareness of the insidious nature of the early symptoms of the lung and
liver disease associated with this genetic condition by both medical
care providers and the public. It is our hope that the federal
government will leverage the Foundation's investment with support for a
national Alpha-1 targeted detection program.
ALPHA-1 IS SERIOUS AND LIFE THREATENING
Alpha-1 is the leading genetic risk factor for Chronic Obstructive
Pulmonary Disease (COPD) and is often misdiagnosed as such. Alpha-1
afflicts an estimated 100,000 individuals in the United States with
fewer than 5 percent accurately diagnosed. These are people who know
they are sick and as yet have not put a name to their malady. Although
Alpha-1 testing is recommended for those with COPD this standard of
care is not being implemented. In addition, an estimated 20 million
Americans are the undetected carriers of the Alpha-1 gene and may pass
the gene on to their children. Of these 20 million carriers, 7-8
million may be at risk for lung or liver disease.
The pulmonary impairment of Alpha-1 causes disability and loss of
employment during the prime of life (20-40 years old), frequent
hospitalizations, family disorganization, and the suffering known only
to those unable to catch their breath. Fully half of those diagnosed
require supplemental oxygen. Lung transplantation, with all its
associated risks and costs, is the most common final option. Alpha-1 is
the primary cause of liver transplantation in infants and an increasing
cause in adults. Alpha-1 liver disease currently has no specific
treatment aside from transplantation. The cost to these families in
time, energy and money is high and often devastating. Alpha-1 also
causes liver cancer.
Alpha-1 is a progressive and devastating disorder that in the
absence of proper diagnosis and therapy leads to premature death; in
spite of the availability of therapeutics for lung disease and
preventative health measures that can be life-prolonging. It is
estimated that untreated individuals can have their life expectancy
foreshortened by 20 or more years. Yet early detection, the avoidance
of environmental risk factors and pulmonary rehabilitation can
significantly improve health.
THE MEDICAL NEEDS OF THE ALPHA-1 COMMUNITY HAVE GONE UNMET
Alpha-1 is a hidden killer that desperately needs new therapies.
There is a lack of awareness of the insidious nature of the early
symptoms of the lung and liver disease associated with this genetic
condition by both medical care providers and the public.
Currently, the only specific therapy for Alpha-1 lung disease is
intravenous augmentation therapy produced from pooled human plasma at
an average annual cost of $50,000-$100,000. This therapy increases the
plasma levels of the deficient protein and appears to slow or halt the
progression of the pulmonary disease described above. There is
currently nothing available to regenerate lung tissue and restore lung
function.
In addition, Alpha-1 liver disease is equally life threatening, as
is the case with many chronic liver conditions, often reaching an
advanced stage with few symptoms and little warning. Advanced liver
disease is often untreatable, and many with Alpha-1 have erroneously
been told they have alcoholic liver disease because of the lack of
physician awareness.
ALPHA-1 AND COPD
As the forth leading cause of death, COPD is a major public health
concern. Data indicates that not all individuals who smoke develop lung
disease leading many to conclude that COPD has significant genetic and
environmental risk factors. As the most significant genetic risk factor
for COPD, Alpha-1 has much to tell us about the pathogenesis of lung
disease. Discoveries and advances made in Alpha-1 will impact the
larger 10-24 million individuals living with COPD.
DETECTION
The Alpha-1 Foundation conducted a pilot program in the state of
Florida where we garnered the knowledge and experience necessary to
launch an awareness and National Targeted Detection Program (NTDP). The
goals of the NTDP are to educate the medical community and people with
COPD and liver disease, alerting them that Alpha-1 may be an underlying
factor of their disease; and stimulating testing for Alpha-1. This
effort will uncover a significant number of people who would benefit
from early diagnosis, treatment and preventative health measures.
The Foundation distributes the American Thoracic Society/European
Respiratory Society (ATS/ERS) ``Standards for the Diagnosis and
Management of Individuals with Alpha-1 Antitrypsin Deficiency'' to
physicians, nurses and respiratory therapists. Additionally, health
care practitioners and the COPD community are being targeted through
press releases, newsletter articles and various website postings.
The national implementation of the NTDP is enhanced through the 7
Clinical Resource Network Centers of the National Heart, Lung, Blood
Institute of the National Institutes of Health; 51 Foundation
affiliated Clinical Resource Centers; large pulmonary practices and
various teaching hospitals and universities. The NTDP also employs a
direct to consumer approach targeted to people with COPD.
The Alpha-1 Foundation's Ethical Legal and Social Issues (ELSI)
Working Group endorsed the recommendations of the ATS/ERS Standards
Document which recommends testing symptomatic individuals or siblings
of those who are diagnosed with Alpha-1. Early diagnosis in Alpha-1 can
significantly impact disease outcomes by allowing individuals to seek
appropriate therapies, and engage in essential life planning.
Unfortunately, seeking a genetic test may lead to discrimination
against individuals who have no control over their inherited condition.
The absence of federal protective legislation has caused the ELSI to
recommend against population screening and genetic testing in the
neonatal population. The Foundation commends the Senate for passing the
Genetic Non-Discrimination Act of 2005 and is working to ensure that
the House takes the same positive action.
The Alpha-1 Coded Testing (ACT) Trial, funded by the Alpha-1
Foundation and conducted at the Medical University of South Carolina
offers a free and confidential finger-stick test that can be completed
at home. The results are mailed directly to the participants. The ACT
Trial has offered individuals the opportunity to receive confidential
test results since September of 2001, to date over 2,400 test kits have
been requested.
ALPHA-1 RESEARCH
The Alpha-1 Foundation believes that significant federal investment
in medical research is critical to improving the health of the American
people and specifically those affected with Alpha-1. The support of
this Subcommittee has made a substantial difference in improving the
public's health and well-being.
The Foundation requests that the National Institutes of Health
increase the investment in Alpha-1 Antitrypsin (AAT) Deficiency and
that the Centers for Disease Control and Prevention initiate a federal
partnership with the Alpha-1 community to achieve the following goals:
--Promotion of basic science and clinical research related to the AAT
protein and AAT Deficiency;
--Funding to attract and train the best young clinicians for the care
of individuals with AAT Deficiency;
--Support for outstanding established scientists to work on problems
within the field of AAT research;
--Development of effective therapies for the clinical manifestations
of AAT Deficiency;
--Expansion of awareness and targeted detection to promote early
diagnosis and treatment.
SPECIFIC AREAS OF CONCERN AND RECOMMENDATIONS
1. The Foundation requests an allocation in the budget to enable
the CDC, National Center for Birth Defects and Developmental
Disabilities to implement a national targeted Alpha-1 detection
program. The Foundation recommends that CDC receive $2 million in
fiscal year 2006 for implementation.
2. The Foundation recommends that NHLBI enhance its portfolio of
research and education on the fourth leading cause of death in the
United States, Chronic Obstructive Pulmonary Disease (COPD), including
genetic risk factors such as Alpha-1 Antitrypsin Deficiency.
3. The Foundation commends NIH on the roadmap and recommends that
NHLBI, NIDDK, NHGRI, NIEHS, and other institutes establish an Alpha-1
inter-institute coordinating committee to facilitate collaboration on
this genetic lung and liver disease.
4. The Foundation encourages HRSA to collect additional data to
evaluate the impact of the new lung transplant organ allocation system
being implemented by the Organ Procurement and Transplantation Network/
United Network for Organ Sharing.
5. The Foundation supports the request of the Ad Hoc Group for
Medical Research Funding for a $30 billion appropriation for NIH in
fiscal 2006.
ALPHA-1 FAST FACTS
Alpha-1 Antitrypsin Deficiency (Alpha-1) is one of the most common
fatal genetic diseases, 95 percent of those with Alpha-1 are
undiagnosed.
Alpha-1 is commonly misdiagnosed as asthma and Chronic Obstructive
Pulmonary Disease (COPD) as symptoms are similar. It usually takes
seven years and five physicians to be accurately diagnosed after the
onset of symptoms.
The World Health Organization (WHO) and the American Thoracic
Society/European Respiratory Society recommends that all individuals
with chronic obstructive pulmonary disease (an estimated 10-24 million
Americans) as well as adults and adolescents with asthma (an estimated
14.6 million Americans) be tested for Alpha-1.
Alpha-1 is more prevalent than Cystic Fibrosis. An estimated 20
million Americans are undetected carriers of the Alpha-1 gene and may
be at risk for lung and/or liver disease and may pass the gene on to
their children.
Alpha-1 is a life-threatening adult onset lung disease that is
progressive and irreversible. It is a major reason for lung
transplantation. Nothing repairs lung tissue damage but early diagnosis
allows individuals to engage in preventative health strategies and
receive appropriate therapy which saves health care dollars.
Alpha-1 can also manifest as liver disease (5-10 percent) in adults
as well as newborns for which the only treatment is a liver transplant.
Alpha-1 is a leading cause of liver transplants in newborns.
COMMON SYMPTOMS OF ALPHA-1 INCLUDE
--Recurring respiratory infections
--Shortness of breath or awareness of one's breathing
--Non-responsive Asthma or Year-Round Allergies
--Rapid deterioration of lung function without a history of
significant smoking
--Decreased exercise tolerance
--Chronic liver problems
--Elevated liver enzymes
______
Prepared Statement of the American Association for Geriatric Psychiatry
The American Association for Geriatric Psychiatry (AAGP)
appreciates this opportunity to present its recommendations on issues
related to fiscal year 2006 appropriations for mental health research
and services. AAGP is a professional membership organization dedicated
to promoting the mental health and well being of older Americans and
improving the care of those with late-life mental disorders. AAGP's
membership consists of approximately 2,000 geriatric psychiatrists as
well as other health professionals who focus on the mental health
problems faced by senior citizens.
AAGP would like to thank the Subcommittee for its continued strong
support for increased funding for the National Institutes of Health
(NIH) over the last several years, particularly the additional funding
you have provided for the National Institute of Mental Health (NIMH),
the National Institute on Aging (NIA), the National Institute on
Alcohol Abuse and Alcoholism (NIAAA), and the Center for Mental Health
Services (CMHS) within the Substance Abuse and Mental Health Services
Administration (SAMHSA). Although we generally agree with others in the
mental health community about the importance of sustained and adequate
Federal funding for mental health research and treatment, AAGP brings a
unique perspective to these issues because of the elderly patient
population served by our members.
There are serious concerns, shared by AAGP and researchers,
clinicians, and consumers that there exists a critical disparity
between appropriations for research, training, and health services and
the projected mental health needs of older Americans. This disparity is
evident in the convergence of several key factors:
--demographic projections inform us that, with the aging of the U.S.
population, there will be an unprecedented increase in the
burden of mental illness among aging persons, especially among
the baby boom generation;
--this growth in the proportion of older adults and the prevalence of
mental illness is expected to have a major direct and indirect
impact on general health service use and costs;
--despite the fact that effective treatment exists, the current
mental health needs of many older adults remain unmet;
--the number of physicians being trained in geriatric mental health
research and clinical care is insufficient to meet current
needs, and this workforce shortfall is projected to become a
crisis as the U.S. population ages over the next decade;
--a major gap exists between research, mental health care policy, and
service delivery; and
--despite recent significant increases in appropriations for support
of research in mental health, the allocation of NIMH and CMHS
funds for research that focuses specifically on aging and
mental health is disproportionately low, and woefully
inadequate to deal with the impending crisis of mental health
in older Americans.
DEMOGRAPHIC PROJECTIONS AND THE MENTAL DISORDERS OF AGING
With the baby boom generation nearing retirement, the number of
older Americans with mental disorders is certain to increase in the
future. By the year 2010, there will be approximately 40 million people
in the United States over the age of 65. Over 20 percent of those
people will experience mental health problems. A national crisis in
geriatric mental health care is emerging and has received recent
attention in the medical literature. Action must be taken now to avert
serious problems in the near future. While many different types of
mental and behavioral disorders can occur late in life, they are not an
inevitable part of the aging process, and continued research holds the
promise of improving the mental health and quality of life for older
Americans.
The current number of health care practitioners, including
physicians, who have training in geriatrics is inadequate. As the
population ages, the number of older Americans experiencing mental
problems will almost certainly increase. Since geriatric specialists
are already in short supply, these demographic trends portend an
intensifying shortage in the future. There must be a substantial public
and private sector investment in geriatric education and training, with
attention given to the importance of geriatric mental health needs. We
will never have, nor will we need, a geriatric specialist for every
older adult. However, without mainstreaming geriatrics into every
aspect of medical school education and residency training, broad-based
competence in geriatrics will never be achieved. There must be adequate
funding to provide incentives to increase the number of academic
geriatricians to train health professionals from a variety of
disciplines, including geriatric medicine and geriatric psychiatry.
Current and projected economic costs of mental disorders alone are
staggering. The direct medical expense to care for a patient with
Alzheimer's disease ranges from $18,000 to $36,000 a year per patient,
depending on the severity of the disease. In addition, there are
substantial indirect costs associated with caring for an Alzheimer's
disease patient including social support, care giving, and often
nursing home care. It is estimated that total costs associated with the
care of patients with Alzheimer's disease is over $100 billion per year
in the United States. Psychiatric symptoms (including depression,
agitation, and psychotic symptoms) affect 30 to 40 percent of people
with Alzheimer's and are associated with increased hospitalization,
nursing home placement, and family burden. These psychiatric symptoms,
associated with Alzheimer's disease, can increase the cost of treating
these patients by more than 20 percent. Although NIA has supported
extensive research on the cause and treatment of Alzheimer's, treatment
of these behavioral and psychiatric symptoms has been neglected and
should be supported through NIMH.
Depression is another example of a common problem among older
persons. Approximately 30 percent of older persons in primary care
settings have significant symptoms of depression; and depression is
associated with greater health care costs, poorer health outcomes, and
increased mortality. Of the approximately 32 million Americans who have
attained age 65, about five million suffer from depression, resulting
in increased disability, general health care utilization, and increased
risk of suicide. Older adults have the highest rate of suicide rate
compared to any other age group. Comprising only 13 percent of the U.S.
population, individuals age 65 and older account for 19 percent of all
suicides. The suicide rate for those 85 and older is twice the national
average. More than half of older persons who commit suicide visited
their primary care physician in the prior month--a truly stunning
statistic.
The enormous and widely underestimated costs of late-life mental
disorders justify major new investments. The personal and societal
costs of mental illness and addictive disorders are high, but advances
in research and treatment will help save lives, strengthen families,
and save taxpayer dollars.
THE BENEFITS OF RESEARCH ON PUBLIC HEALTH
The U.S. Surgeon General's Report on Mental Health (1999) and the
Administration on Aging Report on Older Adults and Mental Health (2001)
underscore the prevalence of mental disorders in older persons and
provide evidence that research has lead to the development of effective
treatments. These reports summarize research findings showing that
treatments are effective in relieving symptoms, improving functioning,
and enhancing quality of life. Preliminary findings suggest that these
interventions reduce the need for expensive and intensive acute and
long-term services. However, it is also well demonstrated that there is
a pronounced gap between research findings on the most effective
treatment interventions and implementation by health care providers.
This gap can be as long as 15 to 20 years. These reports stress the
need for translational and health services research focused on
identifying the most cost-effective interventions, as well as creating
effective methods for improving the quality of health care practice in
usual care settings. A major priority (neglected to date) is the
development of a health services research agenda that examines the
effectiveness and costs of proven models of mental health service
delivery for older persons.
Special attention also needs to be paid to inadequately or poorly
studied, serious late-life mental disorders. Illnesses such as
schizophrenia, anxiety disorders, alcohol dependence and personality
disorders have been largely ignored by both the research community and
the funding agencies, despite the fact that these conditions take a
major toll on patients, their care givers, and society at large. Many
of AAGP's members are at the forefront of groundbreaking research on
Alzheimer's disease, depression, and psychosis among the elderly, and
we strongly believe that more research funds must be focused in these
areas. Improving the treatment of late-life mental health problems will
benefit not only the elderly, but also their children, whose lives are
often profoundly affected by their parents' illness.
While the funding increases supported by this Subcommittee in
recent years have been essential first steps to a better future, a
committed and sustained investment in research is necessary to allow
continuous progress on the many research advances made to date.
NATIONAL INSTITUTE OF MENTAL HEALTH
In his fiscal year 2006 budget, the President proposed an increase
of $200 million for the National Institutes of Health (NIH), which
would bring the entire NIH budget to a level of $28.8 billion. However,
this 0.7 percent increase over the fiscal year 2005 funding level pales
in comparison with recent annual double-digit increases. A decline in
adequate funding increases could have a devastating impact on the
ability of NIH to sustain the ongoing, multi-year research grants that
have been initiated in recent years.
For NIMH, the President is proposing $1.418 billion for scientific
and clinical research, a 0.4 percent increase over the agency's fiscal
year 2005 appropriation of $1.412 billion. It is important to note that
from fiscal year 1999 through fiscal year 2005, NIMH received increases
that lagged behind the increases received by many of the other NIH
institutes. Furthermore, the increase proposed by the Administration
for NIMH for fiscal year 2006 is lower than that proposed for most of
the other institutes at NIH. As Congress moves forward with
deliberations on the fiscal year 2006 budget, AAGP believes that NIMH
should receive a percentage increase that, at the very minimum, is
equal to the average percentage increase for the other NIH institutes.
Commendable as recent funding increases for NIH and NIMH have been,
AAGP would like to call to the Subcommittee's attention the fact that
these increases have not always translated into comparable increases in
funding that specifically address problems of older adults. Data
supplied to AAGP by NIMH indicates that while extramural research
grants by NIMH increased 59 percent during the five-year period from
fiscal year 1995 through fiscal year 2000 (from $485,140,000 in fiscal
year 1995 to $771,765,000 in fiscal year 2000), NIMH grants for aging
research increased at less than half that rate: only 27.2 percent
during the same period (from $46,989,000 to $59,771,000). Furthermore,
despite the fact that over the past four years, Congress, through
Committee report language, has specifically urged NIMH to increase
research grant funding devoted to older adults, this has not occurred.
AAGP is pleased that NIMH has recently renewed its emphasis on
mental disorders among the elderly, and commends the recent creation of
a new Aging Treatment and Prevention Intervention Research Branch at
NIMH. AAGP would like the scope of this Branch increased into a
comprehensive aging Branch that is responsible for all facets of
clinical research, including translational, interventions, and disease-
based psychopathology. The Branch should also be given adequate
resources to fulfill its primary mission within NIMH.
In addition to supporting research activities at NIMH, AAGP
supports increased funding for research related to geriatric mental
health at the other institutes of NIH that address issues relevant to
mental health and aging, including the National Institute of Aging
(NIA), the National Institute on Alcohol Abuse and Alcoholism (NIAAA),
the National Institute on Drug Abuse (NIDA), and the National Institute
of Neurological Disorders and Stroke.
CENTER FOR MENTAL HEALTH SERVICES
It is also critical that there be adequate funding increases for
the mental health initiatives under the jurisdiction of the CMHS within
SAMHSA. While research is of critical importance to a better future,
the patients of today must also receive appropriate treatment for their
mental health problems. SAMHSA provides funding to State and local
mental health departments, which in turn provide community-based mental
health services to Americans of all ages, without regard to the ability
to pay. AAGP was pleased that the final budgets for fiscal years 2002,
2003, 2004, and 2005 included $5 million for evidence-based mental
health outreach and treatment to the elderly. AAGP worked with members
of this Subcommittee and its House counterpart on this initiative,
which is a very important first step in addressing the mental health
needs of the nation's senior citizens. Increasing this mental health
outreach and treatment program must be a top priority, as it is the
only Federally funded services program dedicated specifically to the
mental health care of older adults.
Funding for the dissemination and implementation of evidence-based
practices in ``real world'' care settings must also be a top priority
for Congress. Despite significant advances in research on the causes
and treatment of mental disorders in older persons, there is a major
gap between these research advances and clinical practice in usual care
settings. The greatest challenge for the future of mental health care
for older Americans is to bridge this gap between scientific knowledge
and clinical practice in the community, and to translate research into
patient care. Adequate funding for this geriatric mental health
services initiative is essential to disseminate and implement evidence-
based practices in routine clinical settings across the states.
Consequently, we would urge that the $5 million for mental health
outreach and treatment for the elderly included in the CMHS budget for
fiscal year 2005 be increased to $20 million for fiscal year 2006.
Of that $20 million appropriation, AAGP believes that $10 million
should be allocated to a National Evidence-Based Practices Program,
which will disseminate and implement evidence-based mental health
practices for older persons in usual care settings in the community.
This program will be a collaborative effort, actively involving family
members, consumers, mental health practitioners, experts, professional
organizations, academics, and mental health administrators. With $10
million dedicated to a program to disseminate and implement evidence-
based practice in geriatric mental health, there will be an assured
focus on facilitating accurate, broad-based sustainable implementation
of proven effective treatments, with an emphasis on practice change and
consumer outcomes. Such a program should include several development
phases including identification of a core set of evidence-based
practices, development of evidence-based implementation, and practice
improvement toolkits and field-testing of evidence-based
implementation. This program will provide the foundation for a longer-
term national effort that will have a direct effect on the well-being
and mental health of older Americans.
The Community Mental Health Services Block Grant Program
distributes funds to 59 eligible States and Territories through a
formula based upon specified economic and demographic factors.
Applications must include an annual plan for providing comprehensive
community mental health services to adults with a serious mental
illness and children with a serious emotional disturbance. Because the
mental health needs of our Nation's elderly population are often not
met by existing programs and because the need for such services is
dramatically and rapidly increasing, AAGP recommends that SAMHSA
require States' plans to include specific provisions for mental health
services for older adults. Experience has demonstrated that States do
not make adequate provisions for older adults. This population, which
has unique needs, has been neglected in the planning process. Steps
need to be taken to ensure that adequate mental health services are
available to them.
AGENCY FOR HEALTHCARE RESEARCH AND QUALITY
One of the most valuable resources in our efforts to improve access
to and the quality of geriatric mental health services is the Agency
for Healthcare Research and Quality (AHRQ). In recent years the Agency
has supported important research on mental health topics including
studies on children's mental health issues, the impact of mental health
parity on consumers' share of mental health costs, improving care for
depression in primary care, and cultural issues in the treatment of
mental illness in minority populations. This work has led to important
contributions to the mental health literature, and the advancement of
effective diagnosis and treatment of mental illness. We applaud these
efforts and urge the Committee to increase support for the critical
work of this Agency.
However, we are concerned that the research agenda of the Agency
has not given more attention to geriatric mental health issues. The
prevalence of undiagnosed and untreated mental illness among the
elderly is alarming. Conditions such as depression, anxiety, dementia,
and substance abuse in older adults are often misdiagnosed or not
recognized at all by primary and specialty care physicians. There is
accumulating evidence that depression can exacerbate the effects of
cardiac disease, cancer, strokes, and diabetes. Research has also shown
that treatment of mental illness can improve health outcomes for those
with chronic diseases. Effective treatments for mental illnesses in the
elderly are available, but without access to physicians and other
health professionals with the training to identify and treat these
conditions, far too many seniors fail to receive needed care.
AAGP believes there is an urgent need to translate findings from
aging-related biomedical and behavioral research into geriatric mental
health care. By utilizing the resources of the evidence-based practice
centers under contract to AHRQ, results from geriatric mental health
research can be evaluated and translated into findings that will
improve access, foster appropriate practices, and reduce unnecessary
and wasteful health care expenditures. We urge the Committee to direct
AHRQ to support additional research projects focused on the diagnosis
and treatment of mental illnesses in the geriatric population. We also
believe a high priority should be given to the dissemination of
scientific findings about what works best, to encourage physicians and
other health professionals to adopt ``best practices'' in geriatric
mental health care.
CONCLUSION
Based on AAGP's assessment of the current need and future
challenges of late life mental disorders, we submit the following
fiscal year 2006 funding recommendations:
1. The current rate of funding for aging grants at NIMH and CMHS is
inadequate. Funding for NIMH and CMHS aging-related health services
grants should be increased to be commensurate with current need--at
least three times their current funding levels. In addition, the
substantial projected increase in mental disorders in our aging
population should be reflected in the budget process in terms of dollar
amount of grants and absolute number of new grants.
2. To help the country's elderly access necessary mental health
care, previous years' funding of $5 million for evidence-based mental
health outreach and treatment for the elderly within CMHS must be
increased to $20 million.
3. A fair grant review process will be enhanced by committees with
specific expertise and dedication to mental health and aging.
4. Adequate infrastructure and funding within both NIMH and CMHS to
support the development of initiatives in aging research, to monitor
the number and quality of applicants for aging research grants, to
promote funding of meritorious projects, and to manage those grant
portfolios.
5. The scope of the recently formed Aging Treatment and Prevention
Intervention Research Branch at NIMH should be increased to include all
relevant clinical research, including translational, interventions, and
disease-based psychopathology, and must receive NIMH's full support so
it may fulfill its primary mission.
6. AHRQ should undertake additional research projects focused on
the diagnosis and treatment of mental illnesses in the geriatric
population, and dissemination of information on best practices.
7. Funding for NIAAA must be increased by at least 20 percent to
enable it to undertake more research and collect more data focused on
issues such as the link between alcohol use and late-life suicide and
the impact of alcohol use across the lifespan.
AAGP strongly believes that the present research infrastructure,
professional workforce with appropriate geriatric training, health care
financing mechanisms, and mental health delivery systems are grossly
inadequate to meet the challenges posed by the expected increase in the
number of older Americans with mental disorders. Congress must support
funding for research that addresses the diagnosis and treatment of
mental illnesses, as well as programs for delivery of geriatric mental
health services that increase the quality of life for those with late-
life mental illness.
AAGP looks forward to working with the members of this Subcommittee
and others in Congress to establish geriatric mental health research
and services as a priority at NIMH, CMHS, AHRQ and NIAAA.
______
Prepared Statement of the American Autoimmune Related Diseases
Association
The American Autoimmune Related Diseases Association (AARDA) is the
only national voluntary health agency advocating for the over 100
autoimmune diseases as a genetically and clinically interrelated
family, like cancer. AARDA's aim is to initiate, foster and facilitate
collaboration in autoimmune awareness, education, advocacy and
research. AARDA initiated, supports and facilitates the National
Coalition of Autoimmune Patient Groups (NCAPG), a coalition of 25
voluntary health agencies focusing on individual autoimmune diseases.
The family of autoimmune diseases is under-recognized and as a
result poses a major healthcare problem in the United States. These
diseases afflict over 22 million Americans, more than twice as many as
cancer. Treatment costs exceed $120 billion per year and are rising
rapidly, putting autoimmune disease's financial burden on the same
level as heart and stroke disease and cancer. Autoimmune diseases are
one of the top ten leading causes of death in females under the age of
65.
Autoimmune diseases are a major cause of chronic disability,
further increasing their financial burden on society. Well-known
autoimmune diseases include lupus, rheumatoid arthritis, multiple
sclerosis, and juvenile (Type 1) diabetes. Lesser-known are
scleroderma, Crohn's disease, myasthenia gravis, polymyositis,
autoimmune liver diseases, Sjogren's syndrome and autoimmune blood
disorders.
There is a huge disparity in autoimmune disease research funding
compared to other major disease groups, such as cancer and heart
disease. And some autoimmune diseases get a disproportionate amount of
research funding compared to the others.
Congress addressed these issues in the Children's Health Act of
2000, which mandated the National Institutes' of Health (NIH)
Autoimmune Disease Coordinating Committee to develop an integrated
Autoimmune Diseases Research Plan to address the entire family of
autoimmune diseases and their common underlying cause--the immune
system mistakenly attacking healthy body tissue and organs. All NIH
institutes, the CDCP, VA, FDA and many patients' organizations provided
input to develop and review the Research Plan. It is an excellent plan
recommending an integrated cost-effective approach to autoimmune
disease research and information dissemination.
Some of the Autoimmune Diseases Research Plan's recommendations
have been implemented, but most have not. Much remains to be done,
especially in the new and promising research areas identified in the
Plan. AARDA strongly supports additional funding for the NIH Autoimmune
Disease Coordinating Committee to further expand implementation of the
Autoimmune Diseases Research Plan. This additional funding will allow
the Coordinating Committee to pursue promising research in the areas of
environmental triggers, biomarkers and underlying disease mechanisms to
help identify individuals at risk of developing an autoimmune disease
and develop techniques to prevent the disease or minimize its impact.
AARDA respectfully requests Congress to appropriate $40 million for
the NIH Autoimmune Disease Coordinating Committee to expand
implementation of the Autoimmune Diseases Research Plan to study
environmental triggers of autoimmune disease. This research will pay
for itself many times over by helping to reduce the major financial
burden the family of autoimmune diseases places on our country.
On behalf of the many millions afflicted with an autoimmune disease
and their families, thank you for the opportunity to address this
important issue as Congress develops the Labor, HHS fiscal year 2006
budget. For More information, contact Virginia T. Ladd, Director,
American Autoimmune Related Diseases Assoc., 22100 Gratiot, Eastpointe,
MI., 48021, 586-776-3900 (p) 586-776-3903 (F)
______
Prepared Statement of the American Brain Coalition
WHAT IS THE AMERICAN BRAIN COALITION?
The American Brain Coalition (ABC) is a nonprofit organization that
seeks to reduce the burden of brain disorders and advance the
understanding of the functions of the brain. ABC, unlike any other
organization, brings together all types of organizations representing
the 50 million individuals affected by brain disorders. This includes
the afflicted patients, the families of those that suffer, the
caregivers, and the professionals that research and treat diseases of
the brain.
ABCs' goals are to: (1) promote research funding and progress
towards cures, (2) help to build a healthcare system that is more
responsive to people with both acute and chronic brain disorders, and
(3) advance public understanding about the causes, impacts, and
consequences of neurologic and psychiatric illness in our society.
The brain is the center of human existence, and the most complex
living structure known. As such, ABC members have a broad range of
interests. Among others, the coalition includes organizations and
individuals that:
--are clinicians who treat neurological diseases
--are scientists who research the brain, including the neurological
and psychiatric disorders that affect it
--investigate basic and clinical aspects of epilepsy
--fund research on Rett Syndrome, a debilitating neurological
disorder
--are pioneers in educational and vocational training for the
mentally retarded
--have family members affected by mental health conditions, such as
depression, schizophrenia, and obsessive-compulsive disorder
--are affected by Parkinson's disease and essential tremor
CONGRESSIONAL SUPPORT ACCELERATES DISCOVERY
The National Institutes of Health (NIH), the world's premier
medical research enterprise, is leading the way in research related to
the brain. Thanks to this subcommittee, Congress held to its commitment
to double the budget of the NIH in the late 1990s and early 2000s. The
primary goal for the added funds was to discover better treatments and
cures for human disease. Since then, scientists have amassed a wealth
of medical knowledge. Today, researchers have a greater understanding
of how the brain and nervous system function due to NIH-funded
research. On behalf of the millions of Americans suffering from a
disorder of the brain, ABC thanks the Chairman and Ranking Member for
their continued support of this life altering research.
Many recent scientific discoveries, including those in neurology
and psychiatry, have just begun to show their potential. Some
accomplishments that are a direct result of NIH research include:
--The development of drugs that reduce the severity of symptoms for
those suffering with multiple sclerosis and Parkinson's disease
--The identification of stroke treatment and prevention methods
--The discovery of a new class of anti-depressants that produce fewer
side effects than their predecessors
--The creation of new drugs to help prevent epileptic seizures
--The expansion of treatments for the psychotic symptoms of
schizophrenia
Insights into the biology of schizophrenia, post-traumatic stress
disorder, and other diseases have led to the development of enhanced
diagnostic techniques, better prevention methods, and more effective
treatments. Simply put: the result of Congressional support for
research leads to improved patient care.
WHAT COMES NEXT? THE FUTURE OF RESEARCH
ABC supports NIH in its entirety, with a more specific interest in
the institutes and centers that focus on diseases and disorders of the
brain and nervous system. Because the brain affects all parts of the
body, brain research is broad and must be conducted across institutes
in order to fully understand the diseases that affect so many
Americans.
The NIH Neuroscience Blueprint is a framework to enhance
cooperation among 15 NIH institutes and centers that support this
research. Over the past 10 years, driven by the science, the NIH
neuroscience institutes and centers have increasingly joined forces
through initiatives and working groups focused on specific disorders.
The Blueprint builds on this foundation, making collaboration an
everyday part of how the NIH does business in neuroscience. By pooling
resources and expertise, the Blueprint can take advantage of economies
of scale, confront challenges too large for any single institute, and
develop research tools and infrastructure that will serve the entire
neuroscience community.
The Neuroscience Blueprint encourages the collaboration necessary
in order to advance basic science and to develop new more effective
bedside treatments. The following diseases, along with many others,
have the potential to be greatly affected from this research.
1. Stroke.--Research has already led to the development of more
effective stroke treatments, the identification of new prevention
methods, and the creation of improved rehabilitation techniques.
Despite much progress in stroke research over the past decade, much
remains to be done.
With continued funding, therapies to reverse paralysis of limbs may
be possible. A preliminary analysis indicates that the resulting
financial benefits from reduced medical care, a quicker return to work,
and improved quality of life outweigh the costs of therapy. Future
studies seek to refine the technique, called constraint-induced
movement therapy to further improve outcomes and lower costs.
2. Epilepsy.--Research in the field of Epilepsy has already led to
the discovery of genetic mutations that play a role in how seizures
begin. Additionally, research has aided in the development of a new
generation of antiepileptic drugs and better brain scanning techniques
that assist in diagnosis.
With continued funding, additional drug therapies might be
developed to control seizures. Currently, up to one-third of patients
are resistant to drug therapy. More research must be done in order to
improve the quality of life for these people. One promising approach
may be to use gene therapy to modify the excitability of hyperactive
brain cell circuits. Additionally, increased funding might aid in the
development of devices that are implanted into the brain that could
forewarn doctors and patients of an impending seizure. These tiny
devices could then deliver the drugs directly to the epileptic brain
region in doses that could be regulated by the patient or doctor. Much
more work is needed before such a system could be widely used.
3. Bipolar Disorder.--Past funding from NIH and the Department of
Veterans Affairs has helped scientists make great progress in
understanding bipolar disorder. Today, we know that bipolar disorder is
a biologically based disorder, and not a result of a weak personal
character. Using the latest brain imaging techniques, scientists have
discovered that the brain function and structure in patients with
bipolar disorder differs markedly from that in people without the
illness.
Continued funding for research could lead to the development of
tests for earlier diagnosis and treatment, as well as drug therapies to
prevent or reverse the progressive loss of brain cells that occurs with
bipolar disorder. Already, scientists are exploring the possibility for
low-dose lithium as a preventative measure against atrophy and loss of
cells. Research on lithium may prove advantageous for a variety of
diseases, including schizophrenia and Alzheimer's disease.
Only with continued funding will scientists be able to bring hope
to the millions of Americans suffering from a brain disorder.
BEYOND HELPING PEOPLE: FEDERAL INVESTMENTS IN RESEARCH ARE ECONOMICALLY
BENEFICIAL
Not only does research save lives, but it is a good investment for
the future of America. We know that illness is expensive. Depressive
diseases alone cost U.S. businesses $83 billion in medical
expenditures, suicide-related costs, absences from work, and reduced
productivity while at work. The annual cost of Alzheimer's disease in
the United States is over $100 billion, with more that $30 billion of
that amount paid out by Medicare. As the baby boomers age, without
effective therapy, the number of people affected by Alzheimer's will
quadruple. This number is only expected to increase.
NIH-funded research could alleviate some of the financial strains
that brain disorders place on businesses, government, and families. For
example, a one month delay in admitting Alzheimer's patients to nursing
homes could save $1billion per year. Without additional research, the
economic burden placed on U.S. resources will be exacerbated.
In addition to helping control costs, the federal investment in
research helps stimulate local economies. NIH dollars are sent to every
state in the country, helping to employ thousands of people. According
to the Bureau of Labor Statistics, nearly 1 million people in the
United States are employed in the biosciences. This number is projected
to grow at an annual rate of 13 percent.
RECOMMENDATION
As the Subcommittee considers the fiscal year 2006 appropriations
for the Department of Health and Human Services, we urge you to support
a 6 percent increase in funding for the National Institutes of Health
in order to sustain the pace of recent discoveries.
Treatments for diseases and disorders of the brain will only be
possible if the NIH, the world's leading medical research enterprise,
has a longstanding commitment from Congress.
ABC's request is based on the following information:
--$1 billion is needed to cover biomedical research inflation, which
is projected to be 3.5 percent;
--$560 million is needed to replace the evaluation set-aside (an
amount taken from each institute), which this year amounted to
2.4 percent (it used to be 1 percent); and
--The total number of research project grants (RPGs) is declining by
402 from what it was in fiscal year 2005.
Thank you for the opportunity to provide testimony to this
Subcommittee.
______
Prepared Statement of the American College of Cardiology
More than 70 million Americans are living with cardiovascular
disease, with more than 900,000 of them dying this year from disease-
related complications. In fact, heart disease claims more lives than
cancer, diabetes, and chronic respiratory diseases combined. As
physicians toil to keep these patients alive, another group of
individuals is working just as hard to fight the ravages of heart
disease: Medical researchers.
The American College of Cardiology (ACC), a 33,000-member nonprofit
professional medical society advocating for quality cardiovascular
care, supports increased federal funding of medical research and
urgently calls on Congress to continue to invest in future
cardiovascular care.
As with any financial outlay, there needs to be a healthy return on
investment. The same holds true for medical research, and the ACC
believes the data speaks loudly. Between 1982 and 2002, death rates
attributed to cardiovascular diseases declined by 37 percent. This
remarkable achievement can be attributed to clinically proven
treatments and techniques for managing heart disease. These life-saving
technology advances and treatments originate with cutting-edge
research. Without federally-funded clinical trials, there would not be
stents or statins, ICDs or AEDs, and millions more Americans would die
prematurely from cardiovascular disease.
Each year, agencies such as the National Institutes of Health (NIH)
release groundbreaking studies that fundamentally change the course of
medicine. This year was no exception. Initially presented at the ACC's
Annual Scientific Session in early March and published March 31, 2005,
in The New England Journal of Medicine, The Women's Health Study has
left its mark on the cardiovascular world. This 10-year study of 40,000
healthy women showed that aspirin did not reduce the risk of major
cardiovascular events, a stark contrast to the effects of aspirin in
men. In addition, researchers concluded that many women, especially
those 65 and older, may benefit from taking low-dose aspirin every
other day with the primary goal to prevent stroke. The results of this
study hold immediate implications for the treatment of women at risk
for heart disease, but also point to the broader role of understanding
and adjusting for gender in the development of medical regimens.
Compelling cardiovascular research conducted by the NIH and the
National Heart, Lung and Blood Institute (NHLBI) is critical to
physicians winning the fight against heart disease. The ACC does not
believe that President Bush's proposed fiscal year 2006 budget reflects
the commitment needed to these critical research institutions. Under
the President's plan, the National Institutes of Health (NIH) would
receive a 0.5 percent increase, which is significantly less than the
current rate of inflation. As one of 27 institutes falling under the
NIH umbrella, the NHLBI stands to receive a pittance of this modest
increase. The Centers for Disease Control and Prevention (CDC) fare
even worse, facing millions of dollars in actual funding cuts for
fiscal year 2006.
In order to continue life-saving cardiovascular research and
education, the ACC supports the following fiscal year 2006
appropriations funding levels:
--$30 billion for the NIH, including $2.3 billion for heart research
and $341 million for stroke research
--$3.1 billion for the NHLBI, including $1.9 billion for heart and
stroke-related research
--$55.6 million for the CDC's Heart Disease and Stroke Prevention
Program
These allocations will enable core cardiovascular research that
improves clinical outcomes and quality of care. As the medical
landscape continues to shift with the introduction of new technology
and more complex caseloads, evidence-based research serves as the
foundation of clinical guidelines that direct physician practice. The
ACC draws on federally-funded research to craft documents that set the
standard for cardiovascular care and guide the practice of our members
worldwide.
Adequately funding research today will reap dividends tomorrow,
upon which the federal government through its Centers for Medicare &
Medicaid Services (CMS) will undoubtedly benefit. Even now, CMS is
sponsoring pilot projects designed to pay physicians based on evidence-
driven performance. Advances in medical protocols derived from
federally underwritten research will become the backbone for this push
to deliver better, more cost-effective patient care.
By investing in medical research now, Congress can help at-risk
patients minimize the impact of cardiovascular disease and improve
quality of care for more than 70 million heart patients. The ACC
encourages the subcommittee to continue its support of federally-funded
cardiovascular research by supplying federal agencies with the
resources to continue their life-saving work. Thank you for permitting
the ACC to share its views on this important topic.
______
Prepared Statement of the American Dental Hygienists' Association
The American Dental Hygienists' Association (ADHA) appreciates this
opportunity to submit written testimony regarding fiscal year 2006
appropriations for the Department of Health and Human Services.
ADHA is the largest national organization representing the
professional interests of the more than 120,000 dental hygienists
across the country. Dental hygienists are preventive oral health
professionals who are licensed in each of the fifty states. As
prevention specialists, dental hygienists understand that recognizing
the connection between oral health and total health can prevent
disease, treat problems while they are still manageable, and conserve
critical health care dollars. Dental hygienists are committed to
improving the nation's oral health, a fundamental part of total health.
Indeed, in order to improve access to oral health care, ADHA is
working to establish a new oral health care provider, the ``Advanced
Dental Hygiene Practitioner.'' This new provider would deliver
preventive, therapeutic and restorative services directly to
underserved Americans. Please visit the ADHA web site at www.adha.org
for more information.
U.S. SURGEON GENERAL REPORT ON ORAL HEALTH IN AMERICA AND THE NATIONAL
ORAL HEALTH CALL TO ACTION
In May 2000, the U.S. Surgeon General issued Oral Health in
America: A Report of the Surgeon General. This landmark report confirms
what dental hygienists have long known: that oral health is an integral
part of total health and that good oral health can be achieved. The
Surgeon General's Report on Oral Health challenges all of us--in both
the public and private sectors--to address the compelling evidence that
not all Americans have achieved the same level of oral health and well-
being. The Report describes a ``silent epidemic'' of oral diseases,
which affect our most vulnerable citizens--poor children, the elderly
and many members of racial and ethnic minority groups.
ADHA suggests that one step that needs to be taken is to improve
access to the preventive oral health care services provided by dental
hygienists. This is important because unlike most medical conditions,
the three most common oral diseases--dental caries (tooth decay),
gingivitis (gum disease) and periodontitis (advanced gum and bone
disease)--are proven to be preventable with the provision of regular
oral health care. Despite this prevention capability, tooth decay--
which is an infectious transmissible disease--still affects more than
half of all children by second grade. Clearly, more must be done to
increase children's access to oral health care services.
While the profession of dental hygiene was founded in 1923 as a
school-based profession, today the provision of dental hygiene services
is largely tied to the private dental office. Increased utilization of
dental hygienists in schools, nursing homes, and other sites--with
appropriate referral mechanisms in place to dentists--will improve
access to needed preventive oral health services. This increased access
to preventive oral health services will likely result in decreased oral
health care costs per capita and, more importantly, improvements in
oral and total health.
As the General Accounting Office (GAO) confirmed in two recent
separate reports to Congress, ``dental disease is a chronic problem
among many low-income and vulnerable populations'' and ``poor children
have five times more untreated dental caries (cavities) than children
in higher-income families.'' The GAO further found that the major
factor contributing to the low use of dental services among low-income
persons who have coverage for dental services is ``finding dentists to
treat them.'' Increased utilization of dental hygiene services--
appropriately linked to the services of dentists--is critical to
addressing the nation's crisis in access to oral health care for
vulnerable populations. Indeed, ADHA is committed to working with the
Congress to improve access to oral health care services, particularly
for children eligible for Medicaid and the State Children's Health
Insurance Program (SCHIP). ADHA urges this Subcommittee and all members
of Congress to support the Medicaid and SCHIP programs. ADHA strongly
supports the Smith-Bingaman amendment in the fiscal year 2006 Senate
Budget Resolution that strikes cuts to the Medicaid program and calls
for a Medicaid Commission to carefully study and recommend changes to
the program.
NATIONAL INSTITUTE OF DENTAL AND CRANIOFACIAL RESEARCH
As the Surgeon General's Report on Oral Health so clearly
demonstrates, the nation's oral health can and must be further
improved. The National Institute of Dental and Craniofacial Research
(NIDCR) is the nation's focal point for oral health research and
NIDCR's work has yielded significant advancements in oral health.
Over the past 50 years, our nation's investment in dental and
craniofacial research has yielded tremendous advances in American
public health. Some of the often-cited examples include a sharp
reduction in the once rampant rate of dental caries and tooth loss,
improved care of all aspects of gum (periodontal) diseases, and the
effective management of oral pain. In its ongoing quest to improve the
nation's oral health, a fundamental part of overall health and general
well-being, NIDCR is, for example, working to realize the potential of
salivary diagnostics. As NIDCR Director Lawrence A. Tabak, DDS, PhD
explains, ``scientists have long recognized that our saliva serves as a
mirror' of the body's health, in that it contains the full repertoire
of proteins, hormones, antibodies, and other molecular analytes that
are frequently measured in standard blood tests.''
NIDCR's work in dental research has not only resulted in better
oral health for the nation, it has also helped curb increases in oral
health care costs. Americans save nearly $4 billion annually in dental
bills because of advances in dental research and an increased emphasis
on preventive oral health care. To enable NIDCR to continue and to
build upon its important research mission, ADHA joins with other groups
in the oral health community to recommend that NIDCR be funded at $420
million for fiscal year 2006. ADHA further urges that NIDCR be
preserved as an independent institute in any future NIH reorganization.
DENTAL HEALTH IMPROVEMENT ACT, A COMPONENT OF THE HEALTH CARE SAFETY
NET AMENDMENTS ACT OF 2002
ADHA is pleased to see the increasing recognition among federal
policymakers of the importance of oral health to overall health and
well-being. A primary illustration of this appreciation for the link
between oral health and general health is the Dental Health Improvement
Act, which was passed by Congress as part of the Health Care Safety Net
Amendments Act of 2002 (Public Law 107-261). This important legislation
will assist states in addressing the crisis in access to oral health
services. ADHA joins with others in the oral health community to
recommend $10 million to fund the oral health programs and initiatives
contained within the Act.
CENTERS FOR DISEASE CONTROL ORAL HEALTH PROGRAM
ADHA would also like to lend its support to the Centers for Disease
Control and Prevention (CDC) Oral Health Program. ADHA joins with other
dental groups in urging a budget of $18 million for the CDC Oral Health
Program. This funding level will enable the Oral Health Program to
continue its vital work to control and prevent oral disease, including
its important work in the area of community water fluoridation and
school-based dental sealant programs. ADHA also requests $130 million
for the CDC prevention block grant. Last year, approximately $3.5
million in block grant monies flowed to the states for critical oral
health projects such as replacement of fluoridation equipment.
RYAN WHITE HIV/AIDS DENTAL REIMBURSEMENT PROGRAM
Included in the Ryan White CARE Act is a dental reimbursement
program that assists in meeting the oral health needs of people living
with HIV/AIDS, most of whose care is not covered under existing federal
and state assistance programs. The dental reimbursement program
provides participating institutions with partial reimbursement for the
cost of providing oral health care services to low income people living
with HIV and AIDS. In 1999, oral health care was provided to more than
65,000 patients under the program.
The ``Ryan White CARE Act Amendments of 2000'' rendered--for the
first time--dental hygiene programs eligible for the dental
reimbursement program. While there are only 55 dental schools in the
United States, there are presently 279 accredited dental hygiene
education programs in the United States. In fact, all states have at
least one dental hygiene education program.
ADHA joins with the American Dental Education Association in
recommending $19 million for this important program. ADHA further urges
this Subcommittee to direct HRSA to work to actively encourage and
facilitate the participation of dental hygiene programs in the Ryan
White HIV/AIDS reimbursement effort.
MATERNAL AND CHILD HEALTH PROGRAM
The Maternal and Child Health Block Grant Program provides vital
support and services that improve the health of women and children. It
is critical that the oral health component of this program be
strengthened. This is important because, for example, research
increasingly recognizes the link between severe periodontal disease in
pregnant women and pre-term low birth weight babies. ADHA strongly
supports the MCH programs and urges full funding for fiscal year 2006.
HEALTH PROFESSIONS EDUCATION
ADHA supports the important work of Title VII of the Public Health
Service Act, in particular, the Allied Health Project Grants and the
Scholarships for Disadvantaged Students Program. Allied health
disciplines constitute fully 60 percent of the health care work force.
The Scholarships Program seeks to recruit and retain minority and
disadvantaged students.
ADHA joins the Association of Schools of Allied Health Professions
in recommending $20 million for Allied Health Project Grants and full
funding for the Scholarships for Disadvantaged Students program. With
the acknowledged need for cost-effective health care providers, it is
time to augment funding for and recognition of these important allied
health programs. ADHA further urges full funding for the Centers for
Excellence Program, the Faculty Loan Repayment Program and the Health
Careers Opportunity Program.
NATIONAL HEALTH SERVICE CORPS
ADHA strongly supports the National Health Service Corps (NHSC) and
its Scholarship and Loan Forgiveness Programs. Scholarships and loan
forgiveness provide vital assistance to students entering the health
professions. ADHA urges that the committee again direct the NHSC to
increase the participation of dental health providers, dentists and
dental hygienists alike. This is important because too few Americans--
particularly low-income Americans--regularly access needed oral health
services. ADHA supports $213 million for this important effort.
INDIAN HEALTH SERVICE DENTAL PROGRAMS
American Indians and Alaska Natives suffer disproportionately from
poor oral health. Indeed, 75 percent of American Indian and Alaska
Native children aged 2-5 years old experience untreated dental decay
(caries). The prevalence of dental disease only increases with age. A
staggering 91 percent of American Indian and Alaska Native children
aged 15-19 years old experience tooth decay. In fiscal year 2004, the
proportion of American Indian and Alaska Natives with access to dental
care was only 24 percent. Presently, there are 109 vacancies in the IHS
dental program. Clearly, there is much to be done to improve access to
oral health services for Alaska Natives and American Indians.
Accordingly, ADHA strongly supports the Community Health Aide Program,
including the use of dental health aide therapists. ADHA joins with the
American Academy of Pediatrics and the American Dental Association in
recommending $124 million for IHS dental programs.
CONCLUSION
In closing, the American Dental Hygienists' Association appreciates
the important contributions this Subcommittee has made in improving the
quality and availability of oral health services throughout the
country. ADHA is committed to working with this Subcommittee--and all
Members of Congress--to improve the nation's oral health which, as Oral
Health in America: A Report of the Surgeon General so rightly
recognizes, is a vital part of overall health and well-being.
Please contact our Washington Counsel, Karen Sealander of McDermott
Will & Emery (202/756-8024 or [email protected]), with questions or
for further information. Thank you for this opportunity to submit the
views of the American Dental Hygienists' Association.
______
Prepared Statement of the American Diabetes Association
Thank you for the opportunity to submit testimony on the importance
of federal funding for diabetes programs at the Centers for Disease
Control and Prevention (CDC) and diabetes research at the National
Institutes of Health (NIH).
As the nation's leading nonprofit health organization providing
diabetes research, information and advocacy, the American Diabetes
Association feels strongly that federal funding for diabetes prevention
and research efforts is critical not only for the 18.2 million
Americans who currently have diabetes, but also for the more than 40
million who have a condition known as ``pre-diabetes.''
Diabetes is a serious disease, and is a contributing and underlying
cause of many of the diseases on which the federal government spends
the most health care dollars. In addition to the $132 billion in 2002
dollars in direct and indirect costs spent solely on diabetes each
year, diabetes is a significant cause of heart disease (which costs our
nation $183.1 billion each year), a significant cause of stroke ($43.3
billion each year), and the leading cause of kidney disease ($40.3
billion). Diabetes is also the leading cause of adult-onset blindness
and lower limb amputations.
Approximately 42,000 people suffering from diabetes live in each
congressional district and the number of people living with diabetes in
this country is growing at a shocking rate. Between 1990 and 2001,
diabetes prevalence in the United States has increased by more than 60
percent. The number of Americans with diabetes is now growing at a rate
of 8 percent per year and is the single most prevalent chronic illness
among children. Because the systemic damage diabetes imposes throughout
the body, it is no surprise that the life expectancy of a person with
the disease averages 10-15 years less than that of the general
population.
As the statistics listed above illustrate, we are facing an
epidemic of diabetes in this country, which if left unchecked could
have significant implications for many future generations. The picture,
however, is not without hope. We can stem the tide of this disease, but
to do so requires a renewed federal commitment not only to research,
but also to prevention.
The Association appreciates the increased attention by Congress to
diabetes research at the National Institutes of Health (NIH) in recent
years. While there is not yet a cure for diabetes, researchers at NIH
are working on a variety of projects that represent hope for the
millions of individuals with type 1 and type 2 diabetes. The
Association strongly encourages you to provide a 6 percent increase to
the NIH to fulfill this promise. Unfortunately, while the death rate
due to diabetes has increased by more than 40 percent in recent years,
diabetes research funding has not kept pace. Indeed, from 1987-2001,
appropriated diabetes funding as a share of the overall NIH budget has
dropped by more than 20 percent (from 3.9 percent to 2.9 percent). Over
the last 4 years, Congress has begun to address this discrepancy. We
respectfully ask you to continue this commitment.
While the NIH continues to work towards finding a cure, we must
also adequately fund the diabetes prevention and outreach work being
done at the Centers for Disease Control and Prevention. Therefore, we
are requesting:
--At least a 10 percent increase over fiscal year 2005 levels for the
CDC's Center on Chronic Disease Prevention and Health,
including an additional $10 million increase for the CDC's
Division of Diabetes Translation (DDT); and
--Restoration of the Preventive Health & Health Services Block Grant.
The CDC's Division of Diabetes Translation is critical to our
national efforts to prevent and manage diabetes because they translate
the research that has already been done to real programs at the
community level. Currently, for every $1 that diabetes costs this
country, the federal government invests less than $.01 to help
Americans prevent and manage this deadly disease. This dynamic must be
changed. While the Association strongly believes that significant
funding is needed to fully fund programs in all 50 states, our request
of $10 million recognizes the current budget realities.
In 2004 DDT provided support for more than 50 state- and
territorial-based Diabetes Prevention and Control Programs (DPCPs) to
increase outreach and education, and reduce the complications
associated with diabetes. However, funding constraints required DDT to
provide severely limited support to 24 states, 8 territories, and D.C.
This level of funding, referred to as ``capacity building,'' allows a
state to do surveillance, but is not enough for the state to do much--
or anything--in the way of intervention.
DDT was able to provide the higher level of support, ``basic
implementation,'' to the other 26 states. At the basic implementation
level, states are able to devise and execute community-level programs.
With an additional $10 million over fiscal year 2005 funding levels, an
additional 7 states could start to receive the substantial benefits of
basic implementation programs.
The basic implementation programs undoubtedly make a major impact
on local communities. For example, Daviess County in Kentucky is using
their DPCP funding to support a community-based program that has
trained more than 500 health professionals through professional
education programs, screened and referred more than 1,500 people for
diabetes through innovative events designed to reach the neediest
individuals, provides test strips and emergency medications to more
than 150 individuals annually, and lead comprehensive media and
outreach campaigns to educate the public to recognize the risk factors
for diabetes. While this example highlights the accomplishments from
only one county in one state; it demonstrates the broad approach
enabled by the basic implementation programs. Our goal is to make this
a reality for the rest of the country, so that communities have the
ability to invest in their future by investing in diabetes prevention
and education.
Without fully-funded diabetes programs and projects in all parts of
the country, it will be exceedingly difficult -if not impossible--to
control the escalating costs associated with diabetic complications and
to stem the epidemic rise in diabetes rates. State DPCPs, when provided
with enough funding, are proven programs that have been extremely
successful in helping Americans prevent and manage their diabetes. In
the Division of Diabetes Translation Program Review fiscal year 2004,
the CDC stated, ``The Basic Implementation DPCPs serve as the backbone
for our growing primary prevention efforts. These state programs are
the key elements to our success in meeting the challenges of
controlling and preventing diabetes.'' For example, in Minnesota, the
DPCP initiated a unified, statewide strategic plan for combating
diabetes which resulted in more than 800,000 Minnesotans getting
educational messages through television, radio, print, and web
coverage. In Utah, innovative messaging such as bus wraps on public
transportation are being used to inform hard-to-reach, at-risk
populations of the NDEP messages, ``You are the Heart of Your Family''
and ``Control Your Diabetes. For Life.'' Americans in every state
should have access to such quality programs. Unfortunately, the
Division's fiscal year 2005 budget of just over $63 million, and the
President's request for near flat-funding in fiscal year 2006, will
prevent more counties from implementing programs such as the one
described above.
In addition to DPCP, the CDC's Division of Diabetes Translation
also conducts other activities to help people currently living with
diabetes. For example, CDC works with NIH to jointly sponsor the
National Diabetes Education Program (NDEP), which seeks to improve the
treatment and outcomes of people with diabetes, promote early
detection, and prevent the onset of diabetes. The CDC is also currently
working to develop a National Public Health Vision Loss Prevention
Program that will investigate the economic burden and strength the
surveillance and research of this all-to-common complication of
diabetes. In addition, CDC funds work at the National Diabetes
Laboratory to support scientific studies that will improve the lives of
people with diabetes. In fiscal year 2004, the Division of Diabetes
Translation alone published 46 manuscripts on the care, prevention, and
science of diabetes.
The Association is also supportive of restoration of the CDC's
Preventive Health & Health Services Block Grant (PBG). The PBG, which
allows states to develop innovative health programs at the community
level, received $132 million in FYO5, but is currently slated for no
funding for fiscal year 2006. These programs have been very successful.
For example, New York State uses theirs to help fund statewide regional
partnerships that provide much needed diabetes prevention and control
activities for medically underserved individuals and communities.
Currently, about $2.2 million goes toward diabetes-related programs.
While this is a relatively small amount, it is nonetheless important to
the communities it is currently helping.
The Association, and the millions of individuals with diabetes we
represent, firmly believes that we could rapidly move toward curing,
preventing, and managing this disease by increasing funding for
diabetes programs and research both at CDC and NIH. Your leadership is
essential to accomplishing this goal. As you are considering fiscal
year 2006 funding, we ask you to remember that chronic diseases,
including diabetes, account for nearly 70 percent of all health care
costs as well as 70 percent of all deaths annually. Unfortunately, less
than $l.25 per person is directed toward public health interventions
focused on preventing the debilitating effects associated with chronic
diseases, demonstrating that federal investment in chronic disease
prevention remains grossly inadequate. We cannot ignore those Americans
who are currently living with diabetes and other diseases.
In closing, the American Diabetes Association strongly urges the
Subcommittee and Congress to provide a 10 percent increase for the
CDC's Center on Chronic Disease Prevention and Health, including a $10
million increase for the CDC's Division of Diabetes Translation, and to
restore the Preventive Health & Health Services Block Grant. Providing
this funding would be an important step towards empowering states to
fight diabetes at the community level. Additionally, we urge the
Subcommittee to increase NIH funding by 6 percent to allow for an
increased commitment to diabetes research.
On behalf of the 18.2 million Americans with diabetes--a disease
that crosses gender, race, ethnicity and political party; a disease
that is among the most costly, debilitating, deadly and prevalent in
our nation; and a disease that is exploding throughout our nation--
thank you for the opportunity to submit this testimony. The American
Diabetes Association is prepared to answer any questions you might have
on these important issues.
______
Prepared Statement of the American Lung Association
SUMMARY: FUNDING RECOMMENDATIONS
[In millions of dollars]
------------------------------------------------------------------------
Agency Amount
------------------------------------------------------------------------
National Institutes of Health.............................. 30.1
National Heart, Lung, and Blood Institute.............. 3,117.4
National Institute of Allergy and Infectious Disease... 4,667.1
National Institute of Environmental Health Sciences.... 680.0
National Institute of Nursing Research................. 146.2
Fogarty International Center........................... 71.0
Centers for Disease Control and Prevention................. 8,500.0
National Institute for Occupational Safety and Health.. 326.0
Office on Smoking and Health........................... 130.0
Environmental Health: Asthma Activities................ 70.0
Tuberculosis Control Programs.......................... 215.0
------------------------------------------------------------------------
SUMMARY OF FISCAL YEAR 2006 RECOMMENDATIONS
American Lung Association (ALA) is pleased to present our
recommendations for programs in the Labor Health and Human Services and
Education Appropriations Subcommittee purview.
The American Lung Association is the oldest voluntary health
organization in the United States, with a National Office, constituent,
and affiliate associations around the country. Founded in 1904 to fight
tuberculosis, the American Lung Association today fights lung disease
in all its forms, with special emphasis on asthma, tobacco control and
environmental health. The Lung Association is funded by contributions
from the public, along with gifts and grants from corporations,
foundations and government agencies. The American Lung Association
achieves its many successes through the work of thousands of committed
volunteers and staff.
MAGNITUDE OF LUNG DISEASE
Each year, an estimated 341,500 Americans die of lung disease. Lung
disease is America's number three killer, responsible for 1 in every 7
deaths. More than 25 million Americans suffer from a chronic lung
disease. This year, lung diseases cost the U.S. economy an estimated
$94.9 billion.
Lung diseases represent a spectrum of chronic and acute conditions
that interfere with the lung's ability to extract oxygen from the
atmosphere, protect against environmental or biological challenges and
regulate a number of metabolic processes. Lung diseases include:
chronic obstructive pulmonary disease, lung cancer, tuberculosis,
pneumonia, influenza, sleep disordered breathing, pediatric lung
disorders, occupational lung disease, sarcoidosis and asthma.
Mr. Chairman, while our comments today will focus on selected parts
of the Public Health Service; the American Lung Association is firmly
committed to appropriate funding for all sectors of our nation's public
health infrastructure.
COPD
Chronic Obstructive Pulmonary Disease, or COPD, is a growing health
problem. Yet it remains relatively unknown to most Americans and much
of the research community. COPD is an umbrella term used to describe
the airflow obstruction associated mainly with emphysema and chronic
bronchitis. COPD is the fourth leading cause of death in the United
States and worldwide.
While the exact prevalence of COPD is not well defined, it affects
tens of millions of Americans and can be an extremely debilitating
condition. It has been estimated that 16 million patients have been
diagnosed with some form of COPD and as many as 16 million more are
undiagnosed. New government data based on a 1998 prevalence survey
suggest that 3 million Americans have been diagnosed with emphysema and
9 million are diagnosed with chronic bronchitis. Emphysema affects more
men than women, while chronic bronchitis affects more women than men.
In 1999, 119,524 people in the United States died of COPD. During the
period 1979-1998, the number of deaths from COPD rose almost 126
percent. COPD costs the U.S. economy an estimated $30.4 billion a year.
Today, COPD is treatable but not curable. Fortunately, promising
research is on the horizon for COPD patients. Research in the genetic
susceptibility underlying COPD is making progress. Research is also
showing promise for reversing the damage to lung tissue caused by COPD.
Despite these promising research leads, the American Lung
Association feels that research resources committed to COPD are not
commensurate with the impact COPD has on the United States and the
world. The American Lung Association strongly recommends that the NIH
and other federal research programs commit additional resources to COPD
research programs.
ASTHMA
Asthma is a chronic lung disease in which the bronchial tubes of
the lungs become swollen and narrowed, preventing air from getting into
or out of the lung. A broad range of environmental triggers that vary
from one asthma-sufferer to another causes these obstructive spasms of
the bronchi.
Asthma is on the rise. A 1998 survey found that an estimated 26
million Americans (including 8.6 million children under the age of 18)
have at some point in their lifetime been told by their doctor that
they have asthma. Rates are increasing for all ethnic groups and
especially for African American and Hispanic children. While some
children appear to out grow their asthma when they reach adulthood, 75
percent will require life-long treatment and monitoring of their
condition.
Asthma is expensive. The growth in the prevalence of asthma will
have a significant impact on our nation's health expenditures,
especially Medicaid. Currently, asthma costs the United States $12.7
billion annually, including $8.1 billion in direct medical
expenditures. Asthma attacks bring nearly two million people to the
emergency room each year. Asthma also kills. In 1998, 5,438 people in
the United States died as a result of an asthma attack. That is a 109
percent increase from 1979. A disproportionate share of these deaths
occurred in African American families.
Federal Response to Asthma
The federal response to asthma has three components: research,
programs and planning. We are pleased to report that, with support from
the subcommittee, we are making progress on all three fronts.
Asthma Research
As the prevalence of asthma has grown, so has asthma research.
Researchers are developing better ways to treat and manage chronic
asthma. Research supported by National Heart, Lung and Blood Institute
(NHLBI) has shown that using corticosteroids to treat children with
mild to moderate asthma is safe and effective. For several years there
had been concern that corticosteriods would stunt the growth of
children who used them. This five-year study showed that children had a
one-year small reduction in their growth rate. But they had normal
growth rates compared with children who did not use corticosteriods for
the following four years. Children who used corticosteroids did suffer
fewer asthma attacks and made fewer trips to the emergency room.
Genetic Research
Genetic Research is also providing insights into asthma. Physicians
have noticed that while most people respond well to inhaled beta-
agonists--a commonly prescribed drug to treat asthma--some patients do
not response or have worse asthma using inhaled beta-agonists.
Researchers in the NHLBI supported Asthma Clinical Research Network
have discovered that a genetic variation in the beta-adrenegric
receptor determines how well asthma patients will respond to inhaled
beta-agonists. This discovery will enable physicians to better target
the drugs they proscribe to treat asthma.
Researchers supported by NHLBI have developed better animal models
to allow expression of selected asthmatic genetic traits. This will
allow researchers to develop a greater understanding of how genes and
environmental triggers influence asthma's onset, severity and long-term
consequences.
Asthma Programs
Last year, Congress provided approximately $32.7 million for the
Centers for Disease Control and Prevention (CDC) to conduct asthma
programs. The American Lung Association recommends that CDC be provided
$70 million in fiscal year 2006 to expand its asthma programs.
TUBERCULOSIS
Mr. Chairman, tuberculosis has been with us since the dawn of time.
It is an airborne infection caused by a bacterium, Mycobacterium
tuberculosis (TB). TB primarily affects the lungs but can also affect
other parts of the body, such as the brain, kidneys or spine.
TB is spread through coughs, sneezes, speech and close proximity to
someone with active tuberculosis. People with active tuberculosis are
most likely to spread TB to others they spend a lot of time with, such
as family members or coworkers. It cannot be spread by touch or sharing
utensils used by an infected person.
There are an estimated 10 million to 15 million Americans who carry
latent TB infection. Each has the potential to develop active TB in the
future. About 10 percent of these individuals will develop active TB
disease at some point in their lives. In 2001, there were 15,991 cases
of active TB reported in the United States.
The Institute of Medicine (IOM) recently published a report,
entitled Ending Neglect: The Elimination of Tuberculosis in the United
States. The report documents the cycles of attention and progress
toward TB elimination, the periods of insufficient funding and the re-
emergence of TB. The American Lung Association is pleased to note that,
for the time being, TB rates in the United States are declining. From a
high in 1992 of 26,673 new cases, we have seen 9 straight years of
decline. However, the drop in 2001 was reportedly only 2 percent,
indicating a leveling off of the overall decline in cases and a cause
for concern within the public health community. This is no time to
lower our defenses in funding TB programs.
While declining overall TB rates is good news, the emergence and
spread of multi-drug resistant TB poses a significant threat to the
public health of our nation. Continued support is need if the United
States is going to continue progress toward the elimination of TB.
The IOM report provides the United States with a road map of
recommendations on how to eliminate TB in the United States. The IOM
report identifies needed detection, treatment, prevention and research
activities. The American Lung Association has endorsed the IOM report
and its recommendations. We estimate it will cost $528 million for the
CDC Tuberculosis Elimination Program to implement the report
recommendations.
The NIH also has a prominent role to play in the elimination of TB.
Currently there is no highly effective vaccine to prevent TB
transmission. However, the recent sequencing of the TB genome and other
research advances has put the goal of an effective TB vaccine within
reach. In addition, the American Lung Association encourages the
subcommittee to fully fund the tuberculosis vaccine blueprint
development effort at the National Institutes of Allergy and Infectious
Disease (NIAID).
Fogarty International Center TB Training Programs
The Fogarty International Center (FIC) at NIH provides training
grants to U.S. universities to teach AIDS treatment and research
techniques to international physicians and researchers. The goal is to
develop a cadre of health professionals in the developing world who can
begin controlling the global AIDS epidemic.
Because of the link between AIDS and TB infection, FIC has created
supplemental TB training grants for these institutions to train
international health care professionals in the area TB treatment and
research. This supplemental program has been highly successful in
beginning to create the human infrastructure to treat the nearly two
billion people who have TB worldwide.
However, we believe TB training grants should not be offered
exclusively to institutions that have received AIDS training grants.
The TB grants program should be expanded and open to competition from
all institutions. The American Lung Association recommends Congress
provide $71 million for FIC to expand the TB training grant program
from a supplemental grant to an open competition grant.
RESEARCHING AND PREVENTING OCCUPATIONAL LUNG DISEASE
Protecting the health of our nation's workforce will require
research, training, tracking and new technologies. The American Lung
Association recommends that the subcommittee provide $326 million for
the National Institute for Occupational Safety and Health (NIOSH) at
the Centers for Disease Control and Prevention (CDC), including $25
million for the NIOSH National Occupational Research Agenda (NORA).
NORA represents a partnership research plan for occupational disease.
The NORA agenda was developed with input from labor, business and the
health community.
CONCLUSION
In conclusion, Mr. Chairman, lung disease is a growing problem in
the United States. It is America's number three killer, responsible for
1 in 7 deaths. The lung disease death rate continues to climb. Overall,
lung disease and breathing problems constitute the number one killer of
babies under the age of one year. Worldwide, tuberculosis kills three
million people each year, more people than any other single infectious
agent does. Mr. Chairman, the level of support this committee approves
for lung disease programs should reflect the urgency illustrated by
these numbers.
______
Prepared Statement of the American Psychological Association
The American Psychological Association (APA) is the largest
association of psychologists in the world, representing 155,000
members, affiliates and students. APA exists to advance psychology as a
science, a profession, and a means of promoting education and human
welfare. APA members serve as scientists funded by the National
Institutes of Health and Centers for Disease Control and Prevention, as
teachers and professors in our nation's high schools, colleges and
universities, and as health professionals who treat patients in public
and private clinics and programs. APA encourages the committee to
strengthen U.S. investment in a continuum of programs on health
promotion, disease prevention and care, ranging from basic research to
clinical applications that will improve the health and education of all
Americans. We appreciate the opportunity to submit testimony for the
record.
U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES
National Institutes of Health
The Administration's fiscal year 2006 budget proposes an NIH
funding increase of 0.5 percent, lower than the biomedical inflation
rate. This would not allow NIH to take advantage of many scientific
opportunities. The success rate is already falling from one in three
grant applications funded, to one in four. APA encourages the Committee
to include a six percent funding increase for NIH in this year's
legislation.
Funding increases for the NIH Office of Behavioral and Social
Sciences Research (OBSSR) have been negligible for the past two years,
and the Administration's budget continues the trend (the request is
$26.2 million). The Committee has praised OBSSR for making it easier
for NIH institutes to cooperate to fund cross-cutting initiatives.
OBSSR has been able to leverage substantive funding initiatives with a
small budget. However, its ability to do so is eroding. OBSSR is
planning trans-NIH programs to fund behavioral and social research on
health disparities in minority populations, and on how gene/environment
interactions affect health. It would benefit from a six percent
increase. APA supports an appropriation of $27.66 million for OBSSR.
Critically important behavioral research is being conducted by most
NIH institutes. We can list only a few examples here. Epidemiology
studies supported by NIAAA show that alcohol is a drug of choice for
youth and that it is associated with a host of consequences in this age
group, including death and increased risk of harm and other negative
outcomes. Recent data show that 18- to 24-year-olds have the highest
prevalence of alcohol dependence of any age group. These and other data
make it clear that alcohol has become entrenched in the developmental
processes of adolescence, and that the developmental changes of
adolescence appear to make this age group particularly vulnerable to
alcohol's effects. Research by NIDA and others shows that the human
brain does not fully develop until about age 25. Having insight into
how the human brain works, and understanding the biological
underpinnings of risk taking among young people will help in developing
more effective prevention programs. NIAAA and NIDA are to be commended
for pursuing research to understand how to extricate alcohol and other
addictive drugs from adolescent development and how to change
adolescents' behaviors toward addictive substances.
Psychological research supported by the NICHD is providing critical
answers to many questions about childhood development, including how
children learn to read and how they can overcome learning disabilities.
Additional work is needed to improve our understanding of the role of
cognition in learning mathematical and scientific concepts. Additional
research is also needed to inform the public health community of how
best to modify high-risk behaviors in children and families that
contribute to the rising incidence of childhood obesity.
As NIMH implements its reorganization, APA is encouraging the
institute to maintain its support for a comprehensive research
portfolio that includes funding for a broad array of basic behavioral
research and continues to support research on the promotion of mental
health and the study of psychological, social, and legal factors that
influence behavior. Given the increasing burden of mental disorders on
children and adolescents, behavioral interventions are especially
needed for children and adolescents with eating disorders, attention
deficit-hyperactivity disorder, post-traumatic stress disorder and the
most common forms of depression. Translational research in the
behavioral and social sciences is especially needed to address how
basic behavioral processes, such as cognition, emotion, motivation,
development and social interaction, inform the diagnosis, treatment and
delivery of services for mental disorders.
APA remains concerned that basic behavioral research at NIH--that
is, research on the mechanisms that influence and underlie behavior,
conducted outside a disease context--is vulnerable to budget pressures
and pressures to demonstrate effective interventions. NIH institutes
must balance the imperative for translation with the need to continue
posing basic questions that will fuel the next generation of
interventions. Much basic research is supported at NIH by the National
Institute of General Medical Sciences, yet NIGMS funds very little
basic behavioral research. APA asks that the committee continue to
encourage or direct NIGMS, as it has for the past five years, to fill
some of the gaps that now appear in NIH support of basic behavioral
research and research training.
ADMINISTRATION FOR CHILDREN AND FAMILIES
Prevention of child maltreatment
Nationwide, an estimated 896,000 children are abused and neglected
each year, resulting in an estimated 1,400 child deaths. The negative
effects of child maltreatment can persist into adulthood. An increase
of $15 million will enhance prevention activities for child
maltreatment by population-based monitoring to capture information
about children outside child protective service systems and improve
data collection to inform policy, research and public awareness
programs. These funds will also advance research to prevent the
negative consequences of child maltreatment and to examine risk and
protective factors to further the development and implementation of
culturally and linguistically appropriate prevention and intervention
approaches.
Bullying prevention
Research indicates that bullying directly affects approximately one
in three school children within a school semester. In addition,
research confirms that bullying among children poses serious risks for
victims and perpetrators and may seriously undermine the climate of
schools. APA urges the adoption of research-based comprehensive
bullying prevention programs and adequate federal funding to support
the implementation of effective, comprehensive bullying prevention
programs.
HEALTH RESOURCES AND SERVICES ADMINISTRATION BUREAU OF HEALTH
PROFESSIONS
Graduate Psychology Education (GPE) Program
Funding in the amount of $6 million for fiscal year 2006 is
requested to continue the Graduate Psychology Education (GPE) Program,
which was established in fiscal year 2002. The GPE Program,
administered by the Bureau of Health Professions, is the only federal
program dedicated solely to psychology education and training.
Funded in fiscal year 2003 at $4.5 million and flat-funded for
fiscal year 2004 and fiscal year 2005, the funds are now obligated to
27 grants on a three year cycle. As a result there will be no new
competition this year. Without a modest increase of $1.5 million there
will not be a new competition in fiscal year 2006. The $6 million
request for fiscal year 2006 will enable hundreds of interested
universities and training sites (e.g., veterans hospitals, children's
hospitals, academic science centers and public health facilities) to
apply for a GPE grant to increase the number of psychologists
practicing in underserved rural and urban communities.
The GPE Program provides grants to APA accredited doctoral,
internship and post-doctoral programs in support of interdisciplinary
training of psychology students for the provision of mental and
behavioral health services to underserved populations (i.e., older
adults, children, chronically ill persons, and victims of abuse and
trauma), especially in rural and urban communities. Furthermore, the
GPE Program addresses the need for mental health services that was well
documented in the New Freedom Commission on Mental Health Report
(2003): about 1 in 5 American adults (44 million people) experience a
mental disorder in a given year and 28 percent of adults meet the full
criteria for a mental or addictive disorder.
SUBSTANCE ABUSE, MENTAL HEALTH SERVICES ADMINISTRATION CENTER FOR
MENTAL HEALTH SERVICES
Mental and Behavioral Health Services on Campus Program
Funding in the amount of $5 million for fiscal year 2006 is
requested for the newly established Mental and Behavioral Health
Services on Campus Program, which is part of the Garrett-Lee-Smith
Memorial Act that provides support for youth suicide early intervention
and prevention programs, technical assistance centers for suicide
prevention, and mental and behavioral services on campuses. The program
also helps identify the best means, strategies and solutions for
addressing the mental and behavioral health needs of our college aged
youth.
The Mental and Behavioral Health Services on Campus program
received $1.5 million from fiscal year 2005 funds. The requested
increased funding for $5 million in fiscal year 2006 will help ensure
that SAMSHA administrators will be able to implement the program in a
way that best addresses the needs that exist on college campuses.
Academic failure on our college campuses, which is often associated
with mental or behavioral problems, not only results in personal loss,
but loss in federal investment (student financial assistance), as well.
In the most severe cases, unaddressed psychological problems can lead
to depression and even suicide--a loss that can never be measured.
Minority AIDS Initiative
The estimated number of AIDS cases from 1999 to 2003 has increased
for racial and ethnic minorities, including African Americans, Latino/
as, Asian Pacific/Islanders and American Indians/Alaska Natives. Many
persons with HIV/AIDS have mental and/or substance abuse disorders.
While treatment can enhance overall health and well-being, racial and
ethnic minorities have less access to, and lower utilization of, mental
health and substance abuse services. Accordingly, APA recommends an
additional $5 million, for a total of $15 million, for the Minority
AIDS Initiative to provide culturally competent and accessible mental
health and substance abuse services to persons of color living with
HIV/AIDS.
CENTER FOR SUBSTANCE ABUSE PREVENTION
Rapid HIV Testing
Each year, 25 to 30 percent of HIV-infected people who come to
public clinics for HIV testing do not return a week later to receive
their test results. With the rapid HIV test, results are available in
about 20 minutes. Greater availability of this test can increase
overall HIV testing and reduce the number of people--an estimated
225,000 Americans--who are unaware of their HIV infection. APA strongly
supports the Rapid HIV Testing Initiative to train mental health and
substance abuse service providers on rapid HIV testing and prevention
counseling and urges an additional $4.8 million, for a total of $9.6
million, for fiscal year 2006. Mental health treatment services for
individuals testing positive should also be provided as a critical
component of rapid HIV testing.
CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC) NATIONAL CENTER FOR
INJURY PREVENTION AND CONTROL
Suicide prevention
An increase of $5 million over the fiscal year 2005 appropriation
for suicide prevention activities will allow CDC to support the
evaluation of suicide prevention planning, programs, and communication
efforts to change knowledge and attitudes and to reduce suicidal
behavior. These evaluation efforts will support communities to identify
promising and effective suicide prevention strategies that follow the
public health model and build community resilience.
National Violent Death Reporting System (NVDRS)
An increase of $10 million over the fiscal year 2005 appropriation
for the NVDRS will allow approximately 20 additional states to be
funded to gather and share state-level data about violent deaths. This
state-based system collects data from medical examiners, coroners,
police, crime labs, and death certificates to understand the
circumstances surrounding violent deaths. The information can be used
to develop, inform, and evaluate violence prevention programs.
NATIONAL INSTITUTE FOR OCCUPATIONAL SAFETY AND HEALTH (NIOSH)
APA recommends an overall increase of $40 million over the fiscal
year 2005 appropriation for NIOSH. As the only federal agency for
occupational safety and health research and prevention, NIOSH provides
national and international leadership to prevent work-related illness,
injury, and death by gathering information, conducting scientific
research, and translating the knowledge gained into products and
services.
U.S. DEPARTMENT OF EDUCATION
Institute for Education Sciences
Support for research is particularly critical at the Institute of
Education Sciences as it seeks to translate scientifically based
research findings into classroom practice. To support the highest
quality cognitive, developmental, and educational science, we would
encourage IES to hold a field-initiated studies competition in the next
fiscal year to encourage innovative research driven by scientific
opportunities.
APA appreciates the opportunity to present appropriations
recommendations for the written record, and encourages members of the
Committee to contact our Public Policy Office at (202) 336-6062 with
questions or concerns about this statement.
______
Prepared Statement of the American Psychological Society
SUMMARY OF RECOMMENDATIONS
--As a member of the Ad Hoc Group for Medical Research Funding, APS
recommends $30 billion for NIH in fiscal year 2006.
--APS requests Committee support for increased behavioral and social
science research and training at NIH in order to: better meet
the Nation's health needs, many of which are behavioral in
nature; realize the exciting scientific opportunities in
behavioral and social science research, and; accommodate the
changing nature of science, in which new fields and new
frontiers of inquiry are rapidly emerging.
--Committee support is requested for specific behavioral science
activities at a number of individual institutes. This statement
provides examples to illustrate the exciting and important
behavioral and social science work being supported at NIH.
Mr. Chairman, Members of the Committee: The American Psychological
Society is a nonprofit organization dedicated to the promotion,
protection, and advancement of the interests of scientifically oriented
psychology in research, application, teaching, and the improvement of
human welfare. Our 16,000 members are scientists and educators at the
Nation's universities and colleges.
On behalf of our members, I would like to thank you for your
leadership in the bipartisan effort to double NIH budget. As a result,
NIH has experienced a period of unparalleled growth in the past 5
years, and the progress achieved as a result of research funded by NIH
will lead us into a new era of discovery and innovation. Unfortunately,
that progress is threatened by the Administration's request for fiscal
year 2006, which at only .7 percent (or $196 million) over fiscal year
2005 will not even cover the costs of inflation, never mind sustain and
advance the nation's investment in NIH. As a member of the Ad Hoc Group
for Medical Research Funding, APS recommends $30 billion for NIH in
fiscal year 2006, an increase of 6 percent over fiscal year 2005
funding levels. This increase would help provide a stable base of
funding for the Nation's public health research enterprise and allow
NIH to continue its important scientific pursuits.
Within the NIH budget, APS is particularly focused upon the
behavioral and social science research activities of NIH.
the importance of behavioral research in addressing the nation's health
In any realistic picture of our Nation's health, a core finding is
that behavior is central to many, maybe to most of our Nation's leading
health concerns: heart disease; stroke; lung disease and certain
cancers; obesity; AIDS, suicide; teen pregnancy, drug abuse and
addiction, depression and other mental illnesses; neurological
disorders; alcoholism; violence; injuries and accidents--all have large
behavioral components. Further, nearly 40 percent of premature deaths
in the United States can be attributed to smoking, physical inactivity,
poor diet, or alcohol misuse according to the Centers for Disease
Control and Prevention.
None of the conditions or diseases described above can be fully
understood without an awareness of the behavioral and psychological
factors involved in causing, treating and preventing them. For example,
before you address how to change attitudes and behaviors around AIDS,
you need to know how attitudes develop and change in the first place.
Or, before you can change decisions about any risky behavior, you need
to know how judgments and decisions are made on a range of topics.
Similarly, before you address memory decline in the elderly, you need
to know the basics of learning and memory and how that changes with
age. And before you address the complexity of the interactions among
genetics, the brain, and schizophrenia, you need to know the basics of
cognition, emotion, culture, behavioral aspects of neuroscience, and
behavioral genetics.
APS members include thousands of scientists who, with NIH support,
conduct basic, applied, and clinical research related to physical and
mental health at our Nation's leading universities and colleges.
Virtually every institute at NIH supports some amount of psychological
science. Examples include: The connections between the brain and
behavior; research into how children grow and develop; management of
debilitating chronic conditions such as diabetes and arthritis as well
as mental disorders; and the behavioral aspects of smoking and drug and
alcohol abuse, so that science may find ways for people to escape
addiction.
NIH Director Dr. Elias Zerhouni, has expressed strong support for
behavioral science at NIH, and sees this research as critical to our
Nation's health. ``We are aware of the challenge in social and
behavioral science. It's going to be front and center,'' he has stated.
He went on to add, ``The bill for the nation will be unbearable in
health and social costs without recognition of the role of behavior.''
However, to date, behavioral research has not received the recognition
or support needed to reverse the effects of behavior-based health
problems in this Nation.
APS asks that you continue to help make behavioral research more of
a priority at NIH, both by providing maximum funding for those
institutes where behavioral science is a core activity, by encouraging
NIH to advance a model of health that includes behavior in deciding its
scientific priorities, and by encouraging the establishment of a stable
infrastructure to support basic behavioral science research at NIH.
BASIC BEHAVIORAL SCIENCE RESEARCH NEEDS A STABLE INFRASTRUCTURE
Twenty-four of the 27 institutes at NIH fund behavioral science
research, and seven institutes commit over $100 million to this
enterprise. Six institutes commit over 20 percent of their resources to
behavioral science research. However, most of these institutes do not
fund research into the fundamental behavioral processes that underlie
the diseases and conditions that constitute some of the most vexing
health problems facing us today. Traditionally, such basic behavioral
research has been supported by the National Institute of Mental Health
(NIMH). NIMH, for any number of historical reasons, has been the home
for far more basic behavioral science than any other institute. Many
basic behavioral and social questions were being supported by NIMH,
even if their answers also could be applied to other institutes.
Recently, NIMH has begun to aggressively reduce its support for many
areas of the most basic behavioral research, saying that, like many
other Institutes, it too is disease specific and must focus its energy
on battling mental illness through translational and clinical research.
This means that previously funded areas now are not being supported.
NIMH is to be commended for promoting the transfer of knowledge
into application for mental illness. But this is happening at the
expense of critical basic behavioral research. Without progress in our
understanding of fundamental behavioral processes, there will not be a
sufficient body of knowledge to translate into application. Until other
institutes begin to support larger amounts of basic behavioral science
research connected to their respective missions, it is essential that
NIMH's programs of research in behavioral phenomena such as cognition,
emotion, psychopathology, perception, development, and others continue
to flourish. APS asks the Committee to encourage NIMH's continued
efforts to strengthen the ties between basic and clinical behavioral
research, and to encourage NIMH's basic behavioral science portfolio in
order to ensure continued progress in our understanding of the causes,
treatment and prevention of mental illness and the promotion of mental
health.
nigms should support basic behavioral science research and training
Answering basic social and behavioral science questions is central
to the overall NIH mission. The recent change at NIMH regarding basic
behavioral research illustrates the problem of depending too much on
non-structural support at any one agency for fundamental behavioral and
social science research. Basic behavioral and social science needs a
dependable structure of its own.
The most appropriate location is the National Institute of General
Medical Sciences (NIGMS), also known as NIH's ``basic research
institute''. NIGMS already has a mandate to support basic behavioral
research and training, but that mandate has not been fulfilled in part
because NIMH already was serving that function.
Since fiscal year 1999, this Committee has repeatedly issued report
language urging NIGMS to fund basic behavioral research and training,
saying, for example: ``The Committee is concerned that NIGMS does not
support behavioral science research training. As the only Institute
mandated to support research not targeted to specific diseases or
disorders, there is a range of basic behavioral research and training
that NIGMS could be supporting. The Committee urges NIGMS, in
consultation with the Office of Behavioral and Social Sciences, to
develop a plan for pursuing the most promising research topics in this
area.'' [Senate fiscal year 2000 Appropriations Report 106-166, Senate
fiscal year 2001 Appropriations Report 107-293, Senate fiscal year 2002
Appropriations Report 107-84, Senate fiscal year 2003 Appropriations
Report 107-216, Senate fiscal year 2004 Appropriations Report 108-82]
Two years ago, Senators Specter, Inouye, and Harkin, engaged in a
colloquy on the Senate floor expressing the Committee's strong support
for basic behavioral research and training, and expressing their
concern that NIH had not responded to this matter after many years of
report language. Since then, NIH commissioned a task force to study the
matter and report back to the Director's Advisory Committee. The panel
formally recommended the establishment of a secure and stable home for
basic behavioral science research and training at an NIH institute,
and, in particular, suggested that an institute such as NIGMS should be
that home, as this Committee has recommended for years.
NIGMS is on record saying except for a few fields of inquiry,
behavioral studies largely fall outside of its research mission, and
are instead deemed to be within the missions of other institutes at the
National Institutes of Health. And APS believes this line of thinking
may still hold true within NIGMS. However, NIGMS' statutory mandate
encompasses ``general or basic medical sciences and related natural or
behavioral sciences [emphasis added] which have significance for two or
more other national research institutes'' (TITLE 42, CHAPTER 6A,
SUBCHAPTER III, Part C, subpart 11, Sec. 285k).
Basic behavioral research in the cognitive, psychological and
social processes underlying substance abuse and addiction (significance
for NIDA, NIAAA, NCI and NHLBI), obesity (significance for NIDDK,
NHLBI, and NICHD) and the connections between the brain and behavior
(significance for NIMH, NINDS, and NHGRI) just to name a few, all are
within the NIGMS mission. Given the statutory mandate, the
recommendations of a recent Director's advisory council's task force,
the strong Congressional interest, the scientific imperative, and most
important, the health needs of the Nation, APS asks the Committee to
direct NIGMS to develop a plan for establishing a basic behavioral
science research and training program at NIGMS.
nih needs a comprehensive behavioral science research training strategy
The outcomes of science are unpredictable. Yet there is one aspect
of science where the time and money invested is guaranteed to pay off:
the training of our future scientists. We know that if we provide
support now for a young investigator, we will have a well-trained,
highly-qualified scientist as a result. This is a serious issue in
behavioral science at NIH, where the demand for behavioral science
investigators at NCI, NIMH, and other institutes outpaces the current
supply of behavioral science researchers. In order to meet the future
needs of research in health and behavior, NIH must have a comprehensive
training strategy in place today, one that focuses on training young
investigators in the core disciplines of behavioral and social science
research as well as in multidisciplinary perspectives.
APS is hopeful that NIH will take a closer look at forthcoming
recommendations from a congressionally mandated National Academy of
Sciences (NAS) study of research personnel needs with regard to the
National Research Service Awards (NRSAs). It is anticipated that this
study will be transmitted to Congress and NIH in the near future. When
NAS conducted this study in 2000, NIH selectively implemented NAS's
recommendations and ignored important findings with regard to the need
for increased training, if at all. This Committee has taken note of the
behavioral science recommendations from this study in the past, and has
supported increasing NRSA awards as a mechanism to increase behavioral
science research training. APS asks the Committee to developments
closely.
More generally, APS asks the Committee to support the development
of a comprehensive training strategy for behavioral and social science
research at NIH. This strategy should include all training mechanisms,
and should be balanced between interdisciplinary research and
traditional core disciplines in the behavioral sciences.
BEHAVIORAL SCIENCE AT KEY INSTITUTES
In the remainder of my testimony, I would like to highlight
examples of the cutting edge behavioral science research being
supported by individual institutes.
National Institute of Mental Health (NIMH)
NIMH is funding behavioral research ranging from neural information
processing to social psychology decision-making. Ultimately, this
investment will help researchers understand and improve the way people
think, plan, and make choices about their future as it relates to
everything from chronic mental illness to AIDS. For example, one NIMH
study is aimed at identifying how people understand the near future
versus the distant future with the hopes of relating study findings to
HIV prevention. By investigating how temporal distance from future
events influences judgments and decisions regarding those events,
researchers hope to identify the advantages and disadvantages of
decision-making at different points in time.
An NIMH-funded project is examining the operation of attention at
two coarsely defined stages of processing: visual perception and visual
working memory. By comparing ``memory-intensive'' tasks in which
working memory is overloaded but the perceptual demands are minimal
with ``perception-intensive'' tasks in which memory is not overloaded
but the perceptual demands are great, researchers expect to see
attention operate at different stages in these tasks. By developing
methods to isolate and assess perceptual-level and working memory-level
property mechanisms, researchers will be able to more easily identify
attentional mechanisms compromised in a given disorder. This program of
research will have important long-term implications for psychological/
psychiatric disorders in which attention is compromised, such as
attention deficit disorder, many anxiety disorders, even schizophrenia.
Similarly, the NIMH project titled ``Executive Processes-Behavioral
and Neuroimaging Study'' will help scientists better understand the
brain mechanisms responsible for so-called ``executive'' brain
functions, such as the ability to stay focused, to multi-task, and to
respond with action. Studying these executive processes, which play a
central role in cognition, could influence how we look at behavioral
and psychological functioning, from the changes that occur over the
life span to early diagnosis and treatment of dementia and other
conditions involving reduced cognitive capacities.
National Institute on Drug Abuse (NIDA)
By supporting a comprehensive research portfolio that stretches
across basic neuroscience, behavior, and genetics, the National
Institute on Drug Abuse (NIDA) is leading the Nation to a better
understanding and treatment of drug abuse. APS applauds NIDA for
strengthening its efforts to study adolescent brain development to
examine the influence drug exposure has on behavioral, psychological,
and physiological development. New research supported by NIDA reveals
that drug addiction is a ``developmental disease'' that often starts
during the early developmental stages in adolescence, an age at which 3
million 12-17 year olds reported using illicit drugs last year. If we
can better understand the effects structural brain changes have on
functions like thinking, decision-making, sensation and perception we
will be able to better develop targeted and more likely effective
prevention strategies from the brain development perspective. APS asks
this Committee to support this and other critical behavioral science
research at NIDA, and to increase NIDA's budget in proportion to the
overall increase at NIH in order to reduce the health, social and
economic burden resulting from drug abuse and addiction in this Nation.
National Institute on Alcohol Abuse and Alcoholism (NIAAA)
The National Institute on Alcohol Abuse and Alcoholism (NIAAA)
works to examine the biological, chemical and behavioral factors
associated with alcohol abuse and consumption, the third highest cause
of preventable death in the United States according to the Centers for
Disease Control and Prevention. Over time, NIAAA has broadened its
behavioral science portfolio to understand the underlying psychological
and cognitive processes that lead people to drink, and the impact of
chronic alcohol abuse on those processes. Today, the institute is
stepping up its efforts via its Improving Effectiveness of Treatment
initiative to move beyond what we understand about today's behavior
therapies and to further understand the mechanisms that determine how
and why alcohol-related behavior changes. And since these changes are
influenced by neurobiological, psychological and social factors, this
new and exciting research includes multiple levels of research to
ensure an integrated understanding to improve behavior strategies. APS
asks this Committee to support NIAAA's behavioral science research
efforts, and to increase NIAAA's budget in proportion to the overall
increase at NIH in order to reduce the health, social and economic
burden resulting from alcohol abuse and alcohol dependence.
National Cancer Institute (NCI)
The National Cancer Institute (NCI) is an agency that continues to
make enormous advances in the behavioral sciences to achieve effective
cancer prevention and control. Since its Behavioral Research Program
was launched in 1997, NCI has funded comprehensive behavioral science
research programs ranging from basic behavioral science to research on
the development, testing and dissemination of disease prevention and
health promotion interventions in areas such as tobacco use, diet, and
even sun protection. APS applauds NCI's foresight to conduct
transdisciplinary research within the program's five branches of
Tobacco Control, Cancer Communications, Health Disparities, Energy
Balance, and Cancer Survivorship because it set forward a new path for
science--and APS believes disciplines are only made stronger when
complimented by others. Take for example the agency's Centers for
Transdisciplinary Research on Energetics and Cancer within the Energy
Balance branch. This initiative brings together NCI's investment in
diet, weight and physical activity research priorities by bringing
together scientists from multiple disciplines to carry out projects
ranging from the biology and genetics of energy balance to behavioral,
sociocultural and environmental influences on nutrition, physical
activity, weight, energy balance and energy transferred to or expended
in life processes. In addition to training established scientists, this
investment fosters collaboration among transdisciplinary teams. APS
asks Congress to support NCI's behavioral science research and training
initiatives and to encourage other institutes to use these programs as
models.
National Institute on Aging (NIA)
APS is particularly pleased with NIA's dedication to behavioral
research through the Behavioral and Social Research (BSR) Program--and
its 3 branches of individual behavior, population and social processes
and research resources and development--that supports basic social and
behavioral research and research training by studying the dynamic
interplay between individuals' aging; their changing biomedical,
social, and physical environments; and multilevel interactions among
psychological, physiological, social, and cultural levels. Agency-
conducted research like that of the Behavioral and Imaging Approaches
to Implicit Memory in Aging study will ultimately make a major
contribution to our understanding of age-related changes in memory. As
researchers carefully integrate behavioral and neuroimaging studies to
broaden and deepen current understanding of age-related changes in
implicit memory, they are evaluating decision accuracy in both young
and elderly subjects to assess the neural substrates supporting
encoding and retrieval of implicit memory. APS asks the Committee to
support NIA's behavioral science research efforts and to increase NIA's
budget in proportion to the overall increase at NIH in order to
continue its high quality research to improve the health and wellbeing
of older Americans.
Office of Behavioral and Social Sciences Research (OBSSR)
I'm pleased to report that psychological scientist David Abrams,
from Brown University, has been appointed as the Director of the Office
of Behavioral and Social Sciences Research at NIH. We ask the Committee
to join us in welcoming Dr. Abrams to this position, and to support
OBSSR in its efforts to achieve a strengthened behavioral science
research enterprise at NIH.
It's not possible to highlight all of the worthy behavioral science
research programs at NIH. In addition to those reviewed in this
statement, many other institutes play a key role in NIH behavioral
science research enterprise. These include the National Heart, Lung,
and Blood Institute, the National Institute of Neurological Disorders
and Stroke, the National Institute of Diabetes and Digestive and Kidney
Diseases, the National Institute of Nursing Research, and the National
Institute for Human Genome Research. Behavioral science is a central
part of the mission of these institutes, and their behavioral science
programs deserve the Committee's strongest possible support.
______
Prepared Statement of the American Society of Hematology
Chairman Specter and members of the Subcommittee, the American
Society of Hematology (ASH) thanks you for the opportunity to submit
written testimony on the fiscal year 2006 Departments of Labor, Health
and Human Services, and Education Appropriations Bill. In addition, ASH
sincerely thanks the Subcommittee for its support of biomedical
research.
The Society represents nearly 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; non-malignant conditions including
anemia, thrombosis, and bleeding disorders; and congenital disorders
such as sickle cell anemia, thalassemia, and hemophilia. In addition,
hematologists have been pioneers in the fields of bone marrow
transplantation, gene therapy, and the development of many drugs for
the prevention and treatment of heart attacks and strokes.
Hematologists treat a diverse group of patients. For example,
anemia is a condition that has enormous consequences in the quality-of-
life and functioning of the elderly; sickle cell disease is an
inherited blood disorder that primarily affects African Americans. The
hematological cancers--leukemia, lymphoma, and myeloma--strike men and
woman of all ages; in 2005, nearly 115,000 Americans will be diagnosed
with and more than 53,000 will die from these cancers.
The study of blood and its disorders involves a number of NIH
Institutes, 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). The Society supports the leadership of these
Institutes and commends them for their vision and responsible research
portfolio management.
The Society's requests this year focus on translating basic
scientific findings into improved treatments for patients with serious
blood diseases. New comprehensive approaches to clinical research
funding will advance our understanding of how to treat these and other
diseases, enable patients to participate in high quality clinical
protocols, and attract and train much-needed clinicians and clinical
researchers to the field of hematology.
FISCAL YEAR 2006 FUNDING REQUESTS
NIH Funding
ASH fully supports the Ad Hoc Group for Medical Research Funding
recommendation of $30 billion for NIH in fiscal year 2006. This 6
percent increase represents an important step in maintaining NIH's
commitment to medical research funding so that the progress made during
the doubling years is not eroded. Research programs are not spigots
that you can turn on and off without compromising their effectiveness.
Innovative scientific teams working in sophisticated labs cannot be
sustained without some stability in medical research funding from year
to year. It is critical that the US maintain its commitment to medical
research.
For fiscal year 2006, the Bush Administration proposed $28.845
billion, a $196 million or 0.7 percent increase over last year. This is
the third consecutive year that the President's Budget request for NIH
has not kept pace with medical inflation. Only continued, sustained
investment in life-saving medical science today will provide cures and
therapies for tomorrow. A proposed NIH budget along the lines of
President Bush's recommendation is effectively a cut in funding; it
doesn't keep up with the cost of medical inflation.
Moreover, NIH budgets in the range proposed by the Bush
Administration will force NIH to drop paylines substantially below the
33rd percentile--where they are generally considered unhealthy for the
biomedical research enterprise. Estimated paylines for most NIH
Institutes in fiscal year 2006 are less than the 18th percentile. Low
paylines create an atmosphere of hopelessness for even established
investigators and little incentive for young researchers to take the
chance that their grant would receive funding. More funding at NIH
would provide the Institutes the opportunity to raise their paylines
and fund more qualified and innovative research.
In addition, there needs to be a highly-trained scientific
workforce for NIH to meet its research objectives. Training the next
generation of biomedical researchers has traditionally been the
responsibility of NIH. Under the President's fiscal year 2006 Budget
proposal, NIH will support almost 400 fewer full time training
positions than last year. Without funding for the next generation of
physician scientists, the biomedical research enterprise will not be
prepared for future efforts.
The Society is proud that NIH-sponsored research in hematology has
led to important discoveries and generated new treatments and
pharmaceutical products with broad applicability to human diseases. We
have all benefited from past investments in NIH research. Recent
advances include the incredibly effective hematologic drug Gleevec--a
breakthrough in treating chronic myelogenous leukemia--that is one of
the first drugs of its kind to be approved that targets specific
molecules in cancer cells, leaving healthy cells unharmed. Moreover,
ASH has always emphasized the synergy that is vital to successful
scientific work. Basic research on the blood has aided physicians who
treat patients with heart disease, strokes, end-stage renal disease,
cancer and AIDS. As a result of this cross-fertilization, the Society
remains firmly committed to broad-based support for biomedical research
and to the existing peer-review process as the best way to identify and
prioritize scientific grants.
In fiscal year 2006, ASH also urges the Subcommittee to recognize
the following areas of hematology research that have shown impressive
progress and offer the potential of future advances:
Coordination of the Issues Common to the Hemoglobinopathies
Sickle cell anemia and thalassemia are inherited blood disorders
caused by mutations in the genes for the hemoglobin molecule--the
protein in red blood cells that carries oxygen to all parts of the
body--and affect the normal functioning of hemoglobin in our blood.
These conditions cause many problems including moderate to severe
anemia, chronic pain, iron overload with its associated diabetes, liver
and heart failure, enlarged spleen, bone weakness, pulmonary
hypertension, and stroke. Although these disorders share many common
issues, their research programs at NHLBI are organized into two
parallel structures that could possibly benefit from the expertise of
researchers focused on the other disorder. ASH believes there is an
opportunity to determine the science and management issues common to
the hemoglobinopathies and identify areas of scientific collaboration
and promising new research directions in sickle cell anemia and
thalassemia.
Expansion of Research Activities in the Underlying Causes
of Thrombosis at NHLBI and NIA
Venous and arterial thrombosis (blood clots) are serious conditions
that can lead to heart attacks, strokes, limb loss, and respiratory
dysfunction. Vascular biology research provides the foundation for
understanding the underlying causes of atherosclerosis, angiogenesis,
inflammation, and thrombosis. Greater understanding of vascular biology
will lead to more knowledge about the prevention of thrombosis, which
has implications into the further research of heart disease, stroke,
recurrent fetal loss, complications associated with sickle cell anemia
and diabetes, as well as the interruption of the blood supply to tumors
and cancers.
Recent research disclosed that deep vein thrombosis affects up to 2
million Americans annually. Overall, thrombosis has sharply increased
rates in the elderly and causes significant mortality and morbidity.
With an expanding elderly population, thrombosis could become an even
more serious health care problem. Although age is a known and important
risk factor for thrombosis, there are other major research questions
that need to be investigated in order to improve its diagnosis and
treatment, such as the underlying causes of thrombosis. ASH believes
that new research initiatives in the underlying causes of thrombosis
will be helpful for improving the diagnosis and treatment of this
potentially fatal complication of many diseases.
Strengthening of Support for Clinical and Translational
Blood Cancer Research
In 2005, nearly 115,000 Americans will be diagnosed with a
hematologic malignancy, such as leukemia, lymphoma, and multiple
myeloma. Moreover, more than 53,000 Americans will die from these
cancers, compared to 40,870 for breast cancer, 30,350 for prostate
cancer, and 56,290 for colon and rectum cancer. The blood cancers
strike individuals of all ages, races, and each gender, and serve as
valuable prototypes for the development of therapies for all types of
malignant disorders. The Society hopes to work with NCI to strengthen
its support for translational and clinical blood cancer research and
use all available mechanisms to support blood cancer research by
improving treatments and rapidly moving research advances from the
laboratory bench to the patient's bedside.
Expansion of Research Opportunities in Erythroid
Differentiation, Oxidant Injury, and Metabolomics
High quality hematology research in iron metabolism, gene
regulation, and stem cell plasticity is currently being funded by
NIDDK. ASH hopes to work with the Institute to continue advancing
research in these areas and set new priorities in cutting edge
hematology topics, such as erythroid differentiation, oxidant injury,
and metabolomics.
Funding for the Sickle Cell Treatment Act (Public Law 108-357)
Sickle Cell Disease (SCD) is an inherited blood disorder that is a
major health problem in the United States. More than 2.5 million
Americans, mostly African-Americans, have the sickle cell trait. SCD
occurs in approximately 1 in 300 African-American newborns each year.
The average life span for a patient with this devastating disease is 45
years. While we continue to make progress with treatments, patients
suffer debilitating pain and dangerous problems such as blood clots and
strokes.
As part of fiscal year 2005 Appropriations legislation, Congress
provided $200,000 for the Health Resources and Services Administration
to set up a demonstration program for sickle cell disease health
centers and establish the National Coordinating Center to collect
sickle cell disease-related data as authorized in the Sickle Cell
Treatment Act (Public Law 108-357).
For fiscal year 2006, ASH requests $10 million to continue to build
this program by creating 40 Health Centers across the United States
that would provide education, treatment (i.e., genetic counseling and
testing), and continuity of care for individuals with sickle cell
disease. In addition, this support would train health professionals at
the 40 centers as well as establish a National Coordinating Center to
collect, monitor and distribute information on best practices for the
prevention and treatment of sickle cell disease. This recommendation
has bipartisan, bicameral support as well as the backing of the
Congressional Black Caucus and many other health, children's, church,
union and African-American groups.
ASH believes that the centers created through the Sickle Cell
Treatment Act will improve the lives of SCD patients through disease
management programs to help them live longer, healthier lives while
funding research to find a comprehensive cure and providing community
education about this disease and its treatment options.
CONGRESSIONAL OVERSIGHT OF THE NIH PUBLIC ACCESS POLICY
The Society remains concerned about the impact of the NIH Public
Access Policy on the agency's budget, researchers, and not-for-profit
journals. ASH requests that the Subcommittee continue to be engaged in
the oversight of the policy's implementation. Moreover, the Society
urges the Subcommittee to call for an analysis of the financial impact
of the policy on the NIH budget and individual research grants.
CONCLUSION
This is an exciting time to be engaged in biomedical research and
the Society is proud that ASH members are participating in so many
innovative studies. ASH praises the NIH leadership for the excellent
stewardship of the hematology research portfolio at NCI, NHLBI, NIDDK,
and NIA. The opportunities in hematology research are immense,
particularly in translational research. Partnerships and cooperative
ventures involving multiple academic centers are necessary for clinical
research projects to succeed and need special attention from NIH. When
properly conceived and implemented, ASH believes these studies will
lead to improved therapies for patients with debilitating and deadly
blood disorders. The Society sincerely hopes that the Subcommittee will
continue its longstanding support of biomedical research and will find
the means to fund NIH at $30 billion in fiscal year 2006.
In addition, ASH requests that the Subcommittee provide $10 million
for the Sickle Cell Treatment Act (Public Law 108-357) in fiscal year
2006. This support will create a network of centers across the United
States for the education, treatment, and continuity of care for
individuals with sickle cell disease, a major health care problem.
Thank you again for the opportunity to submit testimony. Please
contact Jeff Coughlin, ASH Government Affairs Manager, at (202) 776-
0544 or [email protected] if you have any questions or need
further information on hematology research, fiscal year 2006 NIH
funding, and support for the Sickle Cell Treatment Act.
______
Prepared Statement of the American Society for Microbiology
The American Society for Microbiology (ASM), representing 43,000
members in the microbiological sciences, is pleased to provide a
statement on the fiscal year 2006 funding for the Centers for Disease
Control and Prevention (CDC). Although the fiscal year 2006 budget
request includes important funding for influenza vaccine, childhood
immunizations, global disease detection, and the Strategic National
Stockpile, the ASM is concerned about the proposed budget reduction of
$491 million for CDC at a time when new health challenges, including a
possible influenza pandemic, threaten public health. The 2003 Institute
of Medicine (IOM) report, Microbial Threats to Health, warns that the
magnitude and urgency of microbial threats demand renewed concern and
commitment. The IOM report emphasizes the importance of strong CDC
programs including greater global capacity for responding to infectious
disease outbreaks, better case reporting by health care providers and
laboratories, and expanded efforts related to antimicrobial resistance.
With people at risk from a broad range of health threats, our
public health system will not be able to respond adequately without
appropriate resources for public health programs. The ASM, therefore,
recommends an increase of 8 percent in the fiscal year 2006 budget for
the CDC. CDC's importance to safeguarding public health, both
nationally and globally, is now unprecedented, but the level of funding
for CDC is not keeping pace with its growing responsibilities to
address new health threats. Infectious disease public health needs have
been and will continue to increase and CDC's funding must remain strong
to address them.
CDC INFECTIOUS DISEASE PROGRAMS
The CDC recently reorganized programs to better adapt to changing
health threats. The Infectious Diseases Coordinating Center oversees
three major programs, the National Immunization Program, the National
Center for Infectious Diseases, and the National Center for HIV/AIDS,
Sexually Transmitted Diseases and Tuberculosis Prevention. The
President's budget includes $1.7 billion related to domestic prevention
and control of infectious diseases through these programs.
INFLUENZA
The National Center for Infectious Diseases is responsible for
measuring progress in global influenza surveillance and detection to
prepare for a pandemic influenza outbreak. Funding for pandemic
influenza preparedness is appropriated through the Department of Health
and Human Service's (DHHS) Public Health and Social Services Emergency
Fund (PHSSEF). The budget proposes $120 million for the expansion of
year-round vaccine production capacity, a priority in the DHHS's draft
Pandemic Influenza Response and Preparedness Plan. A significant
investment will be required to enhance vaccine capacity to address the
threat of pandemic influenza by developing a newer generation of
influenza vaccine that can be quickly produced and deployed to
strengthen the public heath infrastructure on state and local levels,
and to ensure that needed vaccines, antivirals and antibiotics are
readily available.
HIV/AIDS
Under the CDC reorganization, programs focused on HIV/AIDS,
sexually transmitted diseases (STDs), and tuberculosis are managed
through the National Center for HIV, STD, and TB Prevention (NCHSTP).
The budget proposes $956 million, $658 million of which is focused on
prevention of these infectious diseases. Despite CDC efforts over the
past two decades, the number of new HIV infection cases each year
continues to remain high and the number of Americans living with HIV/
AIDS is increasing. In fiscal year 2003, CDC launched a different U.S.
initiative, based on new rapid testing techniques for immediate patient
results, designed to better prevent infections through earlier
notification and to help identify the estimated 180,000 to 280,000
people not aware of their HIV-positive status.
GLOBAL HEALTH
The agency's recent reorganization also coordinated programs under
the Office of Global Health (OGH) to track and prevent the
international spread of diseases like measles, polio, and HIV/AIDS. The
overarching goals are to recognize outbreaks faster, wherever in the
world they occur, and to better control and prevent further outbreaks.
Global disease detection mandates steady expansion of surveillance
systems worldwide, as trade and travel allow rapid spread of previously
unknown or unanticipated pathogens. Clinical and public health
laboratory capacity must be strengthened together with epidemiologic
and communications capabilities. The World Health Organization goal of
eradicating polio by 2005 has suffered some setbacks recently, with
wild poliovirus spreading in some African countries during 2003 and
2004. But last year, cases of the disease declined by nearly 50 percent
in India, Pakistan, and Afghanistan. Since the WHO global initiative
began in 1988, CDC and others have invested more than $3 billion in the
polio campaign. An estimated 250,000 lives have been saved and 5
million cases of childhood paralysis prevented. The CDC also partners
with other federal agencies in the Global AIDS Program and in the
President's Emergency Plan for AIDS Relief. In fiscal year 2004, nearly
2 million HIV laboratory tests and 275,000 tuberculosis infection
laboratory tests were conducted under auspices of the Global AIDS
Program. In addition, antiretroviral drug therapy was provided for
nearly 19,000 AIDS patients in nine countries. By the end of 2003, the
active spread of measles had been stopped in the Western Hemisphere.
That year the CDC and its partners vaccinated more than 115 million
children worldwide. Unfortunately measles persists as one of the
world's leading child killers with an estimated 30 million cases and
700,000 deaths each year.
ANTIMICROBIAL RESISTANCE
Overuse of antimicrobials seriously increases the prevalence of
pathogens resistant to commonly prescribed drugs. Antimicrobial
resistance is considered one of the pressing issues faced by the CDC
and other public health institutions. The 2003 Annual Report of the
Antimicrobial Resistance Interagency Task Force reported that the
number of cases of invasive pneumococcal disease in children in seven
geographic areas declined by 75 percent in 2002 due to widespread use
of pneumococcal vaccine, thereby reducing the use of antimicrobials
which may become resistant. In fiscal year 2004, the CDC inaugurated a
national media campaign about antibiotic resistance, to educate both
patients and health care providers about the serious ramifications of
overprescribing antibiotics. Also in fiscal year 2004, extramural
grants were awarded for applied research in the estimate of economic
costs for antimicrobial resistant human pathogens of public health
importance. The purpose of the grant program is to obtain information
that might impact and improve the current methods of preventing the
emergence and spread of antimicrobial resistance. ASM supports
sufficient budgetary increases in such prevention programs. The return
on investment creates enormous health and economic benefits to the
American public.
IMMUNIZATIONS
The CDC's immunization program would receive $2.1 billion under the
proposed fiscal year 2006 budget, to support the two primary goals of
the program: at least 90 percent of all 2-year-olds to receive the
recommended vaccines, and assurances of an adequate annual influenza
vaccine supply. Investments in immunization programs are proven cost-
savers. For example, every dollar spent on measles-mumps-rubella
vaccine saves an estimated $23 in health-care costs. Fiscal year 2006
funds would flow through the Vaccines for Children program and the
Section 317 program, the former to provide vaccinations to children
otherwise underserved in the health care system, the latter to
subsidize state immunization efforts. As part of the overall CDC
immunization focus, $197 million is requested for influenza-related
activities, representing a nine-fold increase over fiscal year 2001
appropriations. Funds would further expand the pediatric vaccine
stockpile initiated last year, purchase additional doses of influenza
vaccines for the general public, and encourage greater vaccine
production for next winter's flu season. The fiscal year 2006 emphasis
on immunization activities is a prudent use of federal funds needed to
protect the public.
SURVEILLANCE
DNA technology provides some of the notable cutting-edge science
upon which CDC testing and surveillance programs are built and
operated. The PulseNet system, which tracks foodborne illness
outbreaks, is one particularly extensive use of such technology. These
illnesses affect more than 76 million Americans each year; periodic
outbreaks often are widely publicized in the national media. One
example is the 2004 outbreak of salmonellosis among more than 500
people across five states, which CDC epidemiologists tied to
contaminated restaurant tomatoes. Another is a multi-state incident of
hepatitis A infecting more than 1,000 people after they ingested
imported green onions. Similar surveillance systems now exist in
Europe, Pacific Rim countries, and Latin America. The CDC's
Tuberculosis Genotyping Program, initiated in fiscal year 2004, also
fingerprints the genetic profiles of pathogens, enabling case
investigators to assess very quickly how and where the bacterium is
spreading. It already has described outbreaks in several states,
permitting rapid deployment of preventive measures.
BIOTERRORISM PREPAREDNESS
Defenses against possible bioterrorist attacks are a collaborative
initiative among federal, state, and local agencies and authorities.
The CDC is largely responsible for sufficient supplies of
countermeasures such as vaccines and portable treatment units. The
Administration proposes an increase of $56 million for bioterrorism
preparedness activities at the CDC, for a total of $1.6 billion in
fiscal year 2006. Six hundred million is proposed for further enhancing
the Strategic National Stockpile (SNS). Specifically, the Medical
Contingency Station project will be enhanced and increased funding will
also help to pay for BioShield acquisitions and the purchase of
additional anthrax antibiotics for the SNS. The CDC maintains the
capacity to transport SNS materials and personnel to any location
within the United States within 12 hours. During fiscal year 2004, the
CDC nearly tripled the amount of medical countermeasures against
anthrax, now capable of treating 30 million people.
Since 2001, the CDC has recognized the importance of anti-
bioterrorism capabilities at the state and local levels, where attacks
are most likely to occur. About $4.5 billion has been invested in CDC
programs to assure state and local preparedness. The agency's
Laboratory Response Network (LRN) now includes 134 reference labs in
all states, up from 91 in 2001, nearly all capable of detecting agents
of anthrax, tularemia and smallpox. Five veterinary diagnostic
laboratories are now part of the system, recognizing the importance of
animal-to-human transmission of disease pathogens. More than 8,800
laboratory personnel have been trained for bioterrorism emergencies
under CDC auspices. During fiscal year 2004, CDC invested about $846
million to improve the ability of 62 state, local, and territorial
health departments to respond to terrorism, infectious disease
outbreaks, and other public health crises. The CDC funded the Cities
Readiness Initiative, to boost delivery of medicines and other supplies
during large-scale emergencies. The current proposed budget for fiscal
year 2006 however, decreases support for state and local capacity. A
report released this March by New York University concludes that
bioterrorism-related training and equipping of local response personnel
like paramedics have been seriously neglected, an example of yet unmet
needs.
BUILDINGS AND FACILITIES
Since 2001, the CDC has initiated or completed construction of more
than 2.7 million square feet of laboratory and administrative space,
replacing badly deteriorating buildings that were unsafe and
inadequate. This year will mark the completion in Atlanta of a new
Infectious Disease Laboratory, the Scientific Communications Center,
the headquarters building with an Emergency Operations Center to
coordinate quick responses, and the Environmental Toxicology
Laboratory. The fiscal year 2006 request includes $22.5 million to
complete a replacement Vector Borne Infectious Diseases lab in Fort
Collins, Colorado and an additional $7.5 million to fund miscellaneous
repairs and improvements. CDC's master plan for its buildings and
facilities includes additional building renovations that are currently
on hold, with hope to be funded in the near future. ASM applauds
expenditures in recent years to replace the former CDC facilities in
such poor condition and supports the completion of the master plan when
funds can be allocated.
The ASM appreciates the opportunity to provide written testimony
and would be pleased to assist the Subcommittee as it considers its
appropriation for the CDC for fiscal year 2006.
______
Prepared Statement of the American Society for Microbiology
The American Society for Microbiology (ASM), the largest single
life science society with over 43,000 members, is pleased to submit a
statement on the fiscal year 2006 appropriation for the National
Institutes of Health (NIH). The ASM appreciates the strong support that
the Congress has provided for NIH supported biomedical research.
Congress's investment in NIH has paid tremendous dividends in terms of
human health improvements. We can expect progress against disease to
continue because of recent scientific advances and new opportunities
for applications of research knowledge gained from basic research
discoveries. The challenge of infectious diseases, cancer, diabetes and
other chronic diseases will continue to increase, thus, strong support
for NIH is needed.
The ASM recommends a 6 percent increase in the budget for NIH in
fiscal year 2006 and believes this increase would improve the pace of
scientific investigation and the translation of science into new and
better approaches to prevent, diagnose and treat diseases. A funding
increase of this magnitude would allow NIH to take fuller advantage of
innovative tools and technologies and the many extraordinary research
achievements that have been made during the recent past. It would help
to respond to urgent disease threats and realize more of the important
medical treatment and public health goals that loom on the near
horizon.
The ASM considers a 6 percent increase justified for NIH if it is
to continue current programs and deal with new and pressing needs,
including the threat from pandemic influenza, other emerging infectious
diseases such as the recent and unexpected outbreak of SARS, the AIDS
pandemic, a myriad of infectious and chronic diseases that continue to
take a human toll worldwide and biodefense initiatives.
Since fiscal year 2003, the NIH budget has flattened, and at less
than 1 percent, the proposed fiscal year 2006 budget increase will
result in difficult funding decisions for research programs. Because
the budget request for NIH falls below the current biomedical rate of
inflation, which is about 3.5 percent, biomedical research will face a
slowdown in the pace of scientific progress. This static state in
funding comes at a rare time with unprecedented opportunities for major
advances in human health and also at the very time that our nation's
competitors are significantly increasing their investments in research.
Their investments are based on the demonstrated positive impact of
biotechnology and biomedical research on economic development. The
European Union has set a goal of becoming the most competitive
knowledge based economy in the world by 2010. Without increased
investment in federally funded research in the United States, we stand
to diminish the growth of U.S. technology.
BASIC RESEARCH AND TRAINING
The ASM emphasizes the importance of providing increased support
for basic research and the training and participation of young
investigators in biomedical fields. Basic research and human ingenuity
provide the underpinning of new knowledge that is necessary for
successful medical breakthroughs. Basic research drives scientific
creativity and productivity, making increased funding for investigator
initiated research project grants a particularly critical issue when
making funding decisions. Under the proposed fiscal year 2006 budget
for NIH, the total number of research project grants (RPGs) supported
falls below that of fiscal year 2005 by over 400 and no inflationary
increases are provided for direct, recurring costs in noncompeting
RPGs. The ASM recommends increased funding for NIH to ensure a
continuum of high quality research project grants and scientist
training programs to keep biomedical research in the future as vigorous
as it is today.
Specifically, ASM draws attention to the fact that scientific
knowledge of microbes and their role in life and in the environment is
key to new discoveries that will benefit human health. For example, the
study of microbes resulted in the discovery that DNA is the genetic
material of life and was responsible for the molecular revolution that
has transformed biology. Research into basic life processes of bacteria
is a critical underpinning of cellular studies that contribute to
progress in the life sciences. Research on bacteria is urgent because
more bacteria are becoming resistant to antibiotics, raising the
specter of untreatable diseases. NIH should increase support for basic
microbiology research and training and review research portfolios of
the National Institute of General Medical Sciences (NIGMS), which
provides support for fundamental research, and coordinate with other
agencies such as the National Science Foundation (NSF) and the
Department of Energy (DOE) to ensure that scientific opportunities in
important areas of basic bacteriology physiology and genetics research
are receiving adequate attention. The ASM recommends that NIH take
steps such as workshops, requests for proposals and training grants to
increase the infrastructure in this important area of science.
INFECTIOUS DISEASES
Over the past 10 years, new and emerging microbial threats have
continued to challenge the research community as well as the public
health infrastructure. Despite scientific and medical advances,
infectious diseases persist as the third leading cause of death in the
United States and the second leading cause of death worldwide. A recent
report from the Institute of Medicine on microbial threats to public
health concluded that a comprehensive infectious disease research
agenda is essential for successful anti-disease campaigns. The basic
and applied research supported by the National Institute of Allergy and
Infectious Diseases (NIAID) is essential to responding to infectious
disease public health challenges. Unfortunately, the budget for the
NIAID would increase by only 1.3 percent in the request for fiscal year
2006, far less than the amount needed to maintain or accelerate NIAID
supported work to combat a myriad of infectious diseases.
Influenza is a familiar infectious disease threat with the proven
potential for decimating pandemics. Influenza develops in about 20
percent of U.S. citizens each year and an estimated 36,000 die annually
from complications of influenza in the United States, with 250,000 to
500,000 deaths worldwide. In the United States influenza and pneumonia
remain the leading infectious cause of mortality and are ranked seventh
among all causes of death. Influenza viruses steadily mutate and new
strains periodically move from animal hosts to humans. World attention
is drawn to outbreaks of avian influenza in Southeast Asia with about
55 infected persons and 42 deaths since January 2004. The current
strain of H5N1 influenza could acquire characteristics that permit
transmission among humans which could lead to a worldwide influenza
pandemic. The 1918 influenza pandemic killed at least 20 million people
and pandemic avian influenza could kill millions of people. The NIH
Influenza Genomics Project conducts rapid sequencing of the complete
genomes of thousands of avian and human influenza viruses and newly
emerging ones and will study the molecular basis of how new strains of
influenza virus emerge and characteristics that contribute to
virulence. Research is being done to develop a live attenuated vaccine
candidate against each of 15 isolated hemagglutinin proteins that may
speed the development of a vaccine against a potential pandemic strain.
Using reverse genetics technology, a genetically engineered vaccine
candidate against H5N1 was developed in weeks. This technology was also
used to identify a genetic mutation in a H5N1 viral gene that makes the
virus more lethal.
In late 2002, Severe Acute Respiratory Syndrome (SARS) became the
first severe newly emergent infectious disease of the 21st century, but
was rapidly characterized and contained. Because of air travel by its
earliest victims, SARS reached five countries within 24 hours and more
than 30 countries on 6 continents within 6 months of the initial
diagnosed case. Nearly 8,000 persons became ill and international
travel and trade were greatly affected. The global cost of SARS has
been estimated at about $80 billion. NIAID funded research in
collaboration with the Centers for Disease Control and Prevention (CDC)
demonstrated that SARS is a viral disease and a new coronavirus was
identified quickly as the causative agent. By May of 2003, an
international collaboration of researchers had decoded the genetic
sequence of the virus to develop a candidate vaccine that in November
2004 entered early phase tests in humans. Less than 2 years separated
the discovery that SARS is a new infectious disease and the beginning
of vaccine testing in humans, a process that traditionally can take
decades. Results came quickly because of research and public health
cooperation, NIAID resources and new molecular biology techniques.
Research and technology developed during past disease outbreaks
facilitate NIAID responses to unique or sporadic challenges like SARS,
West Nile virus, Ebola virus, and bovine spongiform encephalopathy.
Research yields major insights into the pathogenic mechanisms of
established diseases such as HIV/AIDS, tuberculosis and malaria. An
estimated 40 million people worldwide are living with HIV/AIDS. NIAID
research has made possible critical discoveries about the basic biology
of HIV and the immune response to HIV infection which has led to the
development of therapies that suppress the growth of the virus.
Approximately 20 antiretroviral medications that target HIV have been
developed and approved by the Food and Drug Administration. More
scientific research is needed on the virus to identify additional
targets for therapeutic interventions and vaccines. Despite the fact
that tuberculosis (TB) is one of the oldest infectious diseases known,
the global incidence rate is still increasing. More than one third of
the world is latently infected with TB. Every day there are 5,000
deaths due to TB. A big part of the problem is the increasing number of
patients with the deadly combination of TB and HIV. The only available
medicines to treat and diagnose TB are from another era. Rapid
development of new tools is greatly needed to address the growing
problems of multi-drug resistant TB. Malaria is one of the major
killers of humans in the world with an estimated 300 million acute
illnesses each year and more than 1 million deaths. Both tuberculosis
and malaria pathogens are increasingly resistant to commonly used
antimicrobial drugs. Genomic and postgenomic techniques are being
applied to identify key molecular pathways that could be exploited to
develop TB interventions and vaccines. The complete genomic sequence of
the malaria vector and parasite were completed in 2002, providing
powerful tools to further characterize the genes and proteins involved
in the life cycle of the malaria parasite. NIAID supported programs in
basic and applied areas are contributing to knowledge that is needed to
design new vaccines, therapeutics and diagnostics against these
formidable infectious diseases that exact a terrible social, economic
and human toll globally.
The NIAID research portfolio is challenged as never before to
address new and emerging infectious diseases and those that have
affected humans for thousands of years but are still a public health
threat. NIAID supports important research on the hepatitis viruses
which cause liver inflammation and tissue damage and can cause chronic
infections. There are more than 25 identified sexually transmitted
infections (STIs) that affect more than 15 million people in the United
States. STIs can lead to infertility, complications in pregnancy,
cervical cancer, low birth weight, congenital/perinatal infections and
other chronic conditions and are of critical global and national health
priority because of their impact on women and infants. NIAID basic and
clinical research studies on mechanisms of pathogenesis of STIs and
prevention strategies for the control of these infections are
essential. Bacterial and viral infections of the gastrointestinal tract
often lead to diarrheal disease and to chronic conditions such as
ulcers and stomach cancer. In the United States, diarrhea is the second
most common infectious illness and diarrheal diseases account for 15 to
34 percent of deaths in some countries. Infection with Helicobacter
pylori is a major risk factor for developing peptic ulcer disease,
stomach cancer and primary gastric B cell lymphoma. NIAID supports
research to understand, prevent and treat enteric diseases through a
variety of initiatives. NIAID also sponsors research on West Nile
Virus, which first emerged in 1999 in New York City, other insect-borne
diseases such as Lyme Disease and fungal diseases that can cause severe
systemic infections.
BIODEFENSE RESEARCH
The NIH is responsible for the implementation of the strategic plan
for biodefense research. The NIH biodefense budget, proposed at $1.7
billion for fiscal year 2006, is part of the budget for NIAID, the lead
agency at NIH for infectious diseases and immunology research. Research
is the backbone of the NIAID biodefense efforts and includes genomics
and studies of pathogenesis and host defense, microbial physiology and
animal disease models. Sustained funding by the Administration and
Congress over the past few years is making possible significant
progress evidenced by over 60 NIAID biodefense initiatives now in
place.
Following the September 11, 2001 terrorist attack in the United
States and terrorist events using biological agents, awareness about
the potential of bioterrorism and the vulnerability of people to a
bioterrorism event prompted the U.S. Government to pursue a range of
programs and capabilities to prepare for future emergencies (Homeland
Security Presidential Directive 10). Among these was increased funding
for research and development of medical countermeasures within the
Department of Health and Human Services to enable the country to mount
a successful medical and public health response to a biological attack
on the civilian population should such a terrible event occur. In 2002
the ASM testified before Congress that pathogenic microbes pose a
threat to national security whether they occur naturally or are
released in a bioterrorism attack. Biodefense research is part of the
continuum of biomedical research aimed at protecting the nation and the
world against infectious diseases. The ASM supports having federal
biomedical and infectious disease research efforts related to civilian
human health prioritized and conducted by and at the direction of the
DHHS and NIH.
In early 2002, the NIAID convened a panel of experts, the Blue
Ribbon Panel on Bioterrorism and Its Implications for Biomedical
Research, to provide guidance on the future biodefense research agenda,
research resources, facilities and scientific personnel. The NIAID
developed research priorities and goals for potential agents of
bioterrorism with particular emphasis on the ``Category A'' agents
considered by the CDC and NIH as the worst currently recognized
potential bioterror threats. The NIAID developed the NIAID Strategic
Plan for Biodefense Research, The NIAID Biodefense Research Agenda for
CDC Category A Agents, and the NIAID Biodefense Research Agenda for
Category B and C Priority Pathogens. Approximately 60 NIAID initiatives
were funded in fiscal years 2002-2004, including funding for a network
of 8 nationwide multidisciplinary Regional Centers of Excellence (RCE)
for Biodefense and Emerging Infectious Diseases Research, 2 National
Biocontainment Laboratories (NBLs), and 9 Regional Biocontainment
Laboratories (RBLs) to provide secure space for the expanded civilian
biodefense research program. The genomes of the biological agents
listed as posing the most severe threats have been sequenced; new
animal models have been developed to test promising drugs and
repositories have been established to catalog reagents and specimens.
NIAID is sponsoring basic research to understand structure, biology and
mechanisms by which potential bioweapons cause disease, studies to
elucidate how the human immune system responds to dangerous pathogens
and technology to translate basic research into medical countermeasures
to detect, prevent and treat diseases caused by potential biological
weapons.
Advances in biodefense research are outlined in the NIAID
Biodefense Research Agenda for CDC Category A Agents Progress Report
and the NIAID Biodefense Research Agenda for Category B and C Priority
Pathogens Progress Report. NIAID supported biodefense research is
conducted through collaborataive efforts with academic institutions and
public/private partnerships and scientific communications are open,
facilitating scientific and medical progress against infectious
diseases. NIAID anticipates that the large investment mandated by the
government in civilian biodefense research will advance scientific
knowledge that will have positive spin offs for other diseases.
______
Prepared Statement of the American Thoracic Society
SUMMARY: FUNDING RECOMMENDATIONS
[In millions of dollars]
------------------------------------------------------------------------
Agency Amount
------------------------------------------------------------------------
National Institutes of Health........................... 30,000.0
National Heart, Lung and Blood Institute............ 3,117.0
National Institute of Allergy and Infectious Disease 4,667.0
National Institute of Environmental Health Sciences. 680.0
Fogarty International Center........................ 71.5
National Institute of Nursing Research.............. 146.0
Centers for Disease Control and Prevention.............. 8,500.0
National Institute for Occupational Safety and 326.0
Health.............................................
Environmental Health: Asthma Activities............. 70.0
Tuberculosis Control Programs....................... 215.0
------------------------------------------------------------------------
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.
The American Thoracic Society, founded in 1905, is an independently
incorporated, international education and scientific society that
focuses on respiratory and critical care medicine. For 100 years, the
ATS has continued to play a leadership role in scientific and clinical
expertise in diagnosis, treatment, cure and prevention of respiratory
diseases. With approximately 13,500 members who help prevent and fight
respiratory disease around the globe, through research, education,
patient care and advocacy, the Society's long-range goal is to decrease
morbidity and mortality from respiratory disorders and life-threatening
acute illnesses.
LUNG DISEASE IN AMERICA
Lung disease in America is a serious problem. Each year, an
estimated 342,000 Americans die of lung disease. Lung disease is
responsible for one in every seven deaths, making it America's number
three cause of death. More than 35 million Americans suffer from a
chronic lung disease. In 2005, lung diseases cost the U.S. economy an
estimated $139.6 billion in direct and indirect costs, a total of 5.9
percent of the U.S. economy.
Lung diseases represent a spectrum of chronic and acute conditions
that interfere with the lung's ability to extract oxygen from the
atmosphere, protect against environmental or biological challenges and
regulate a number of metabolic processes. Lung diseases include chronic
obstructive pulmonary disease, lung cancer, tuberculosis, influenza,
sleep disordered breathing, pediatric lung disorders, occupational lung
disease, sarcoidosis, asthma and severe acute respiratory syndrome
(SARS).
The ATS is pleased that the Subcommittee provided increases in the
National Institutes of Health (NIH) and the Centers for Disease Control
and Prevention (CDC) budget last fiscal year. However, we are extremely
concerned with the president's fiscal year 2006 budget that proposes a
mere 0.5 percent increase for NIH and significant cuts for CDC. We ask
that this Subcommittee recommend a 6 percent increase for NIH and an
8.1 percent increase for the CDC. In order to stem the devastating
effects of lung disease, research funding must continue to grow to
sustain the medical breakthroughs made in recent years. There are three
lung diseases that illustrate the need for further investment in
research and public health programs: Chronic Obstructive Pulmonary
Disease, pediatric lung disease, specifically asthma and tuberculosis.
COPD
Chronic Obstructive Pulmonary Disease (COPD) is the fourth leading
cause of death in the United States and the third leading cause of
death worldwide. Yet, COPD remains relatively unknown to most
Americans. COPD is the term used to describe the airflow obstruction
associated mainly with emphysema and chronic bronchitis and is a
growing health problem.
While the exact prevalence of COPD is not well defined, it affects
tens of millions of Americans and can be an extremely debilitating
condition. It is estimated that 11.2 million patients have COPD while
an additional 13 million Americans are unaware that they have this life
threatening disease.
According to the National Heart, Lung and Blood Institute (NHLBI),
COPD cost the U.S. economy an estimated $37.2 billion in 2004.
Unfortunately, NHLBI spends about $44,000 a year on COPD research. We
recommend the Subcommittee encourage NHLBI to devote additional
resources to finding improved treatments and a cure for COPD.
Medical treatments exist to relieve symptoms and slow the
progression of the disease. Today, COPD is treatable but not curable.
Fortunately, promising research is on the horizon for COPD patients.
Despite these leads, the ATS feels that research resources committed to
COPD are not commensurate with the impact COPD has on the United States
and the world. Clearly more needs to be done to make Americans aware of
COPD, its causes and symptoms. We were pleased to participate in an
NHLBI-sponsored workshop to formulate strategies toward implementing a
National COPD Education and Prevention Program. As this effort
continues, we encourage the NHLBI to maintain its partnership with the
patient and physician community in the next stages in the development
of the National COPD Education and Prevention Program.
While additional resources are needed at NIH to conduct COPD
research, CDC has a role to play as well. The ATS encourages the CDC to
add COPD-based questions to future CDC health surveys, including the
National Health and Nutrition Evaluation Survey (NHANES), the National
Health Information Survey (NHIS) and the Behavioral Risk Factor
Surveillance Survey (BRFSS). By collecting information on the
prevalence of COPD, researchers and public health professionals will be
better able to understand and control the disease.
PEDIATRIC LUNG DISEASE
Lung disease affects people of all ages. The ATS is pleased to
report that infant death rates for various lung diseases have declined
for the past ten years. However, of the seven leading causes of infant
mortality, four are lung diseases or have a lung disease component. In
2002, lung diseases accounted for 21 percent of all deaths under one
year of age. It is also widely believed that many of the precursors of
adult respiratory disease start in childhood. The ATS encourages the
NHLBI to continue with its research efforts to study lung development
and pediatric lung diseases.
The pediatric origins of chronic lung disease extend back to early
childhood factors. For example, many children with respiratory illness
are growing into adults with COPD. In addition, it is estimated that
close to 20.3 million people suffer from asthma, including an estimated
6.1 million children. While some children appear to outgrow their
asthma when they reach adulthood, 75 percent will require life-long
treatment and monitoring of their condition. Asthma is the third
leading cause of hospitalization among children under the age of 15 and
is the leading cause of chronic illness among children.
The ATS feels that the NIH and the CDC must play a leadership role
in the ways to assist those with asthma. National statistical estimates
show that asthma is a growing problem in the United States. However, we
do not have accurate data that provide regional and local information
on the prevalence of asthma. To develop a targeted public health
strategy to respond intelligently to asthma, we need locality-specific
data. CDC should take the lead in collecting and analyzing this data.
Last year, Congress provided approximately $32 million for the CDC
to conduct asthma programs. We recommend that CDC be provided $70
million in fiscal year 2006 to expand programs and establish grants to
community organizations for screening, treatment, education and
prevention of childhood asthma.
TUBERCULOSIS
Tuberculosis (TB) is a global public health crisis that remains a
concern for the United States. Tuberculosis is an airborne infection
caused by a bacterium, Mycobacterium tuberculosis. Tuberculosis
primarily affects the lungs but can also affect other parts of the
body, such as the brain, kidneys or spine. The statistics for TB are
alarming. Globally, one-third of the world's population is infected
with the TB germ, 8-10 million active cases develop each year and 2-3
million people die of tuberculosis annually. It is estimated that 10-15
million Americans have latent tuberculosis. Tuberculosis is the leading
cause of death for people with HIV/AIDS.
While we are pleased that CDC has reported 12 straight years of
decline in United States. TB rates, we remain concerned that TB rates
in African Americans remain high and the TB rates in foreign-born
Americans is growing. In addition, there has also been an increase in
the number of TB cases among people with HIV/AIDS, prisoners, the
homeless and certain immigrant communities.
Upon review of this information, many have concluded that a cycle
of neglect has begun, reminiscent of a previous resurgence in the early
1980's. The ATS, in collaboration with the National Coalition for
Elimination of Tuberculosis, recommends an increase of $105 million for
TB control in fiscal year 2006 to allow the CDC undertake an
unprecedented initiative, Intensified Support and Activities to
Accelerate Control (ISAAC), to enhance, maximize and target resources
to sustain the momentum of the past decade and accelerate the control
and elimination of tuberculosis. ISAAC targets tuberculosis in African
Americans, tuberculosis along the United States-Mexico border, allows
for universal genotyping of all culture positive TB cases, and expands
clinical trials for new tools for the diagnosis and treatment of
tuberculosis.
In the efforts to eliminate tuberculosis, it is important to note
that in 2004 foreign-born residents accounted for nearly 54 percent of
U.S. tuberculosis cases. The CDC is working to enhance screening of
immigrants and refugees overseas, test recent arrivals from countries
that have high TB rates, and cooperate with authorities to control
tuberculosis along the United States-Mexico border.
The NIH also has a prominent role to play in the elimination of
tuberculosis. Currently there is no highly effective vaccine to prevent
TB transmission. However, the recent sequencing of the TB genome and
other research advances have put the goal of an effective TB vaccine
within reach. The National Institute of Allergy and Infectious Disease
has developed a Blueprint for Tuberculosis Vaccine Development. We
encourage the Subcommittee to fully fund the TB vaccine blueprint. We
also encourage the NIH to continue efforts to develop drugs to combat
multi-drug resistant tuberculosis a serious emerging public health
threat.
It is clear that efforts to eliminate tuberculosis must continue.
From recent TB outbreaks in Fort Wayne, IN and Chesapeake, VA to the
hundreds of people being tested for tuberculosis in Houston, TX and
Santa Barbara, CA, tuberculosis is still a problem in the United States
today.
PHYSICIAN WORKFORCE SUPPLY
As the number of people diagnosed with lung diseases rises, we need
to ask, who will be treating lung disease patients in the future? The
ATS is concerned about the supply of physicians in the United States. A
recent study published in the Journal of the American Medical
Association predicts that there will be an acute shortage of physicians
trained to treat patients with critical care illness and lung disease
starting in 2007.\1\ While the study focuses on supply of pulmonary/
critical care physicians, what is driving the shortage is the
predicated increase in demand for physician services caused by the
aging of the U.S. population.
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\1\ D. Angus, et al. Current and Project Workforce Requirements for
Care of the Critically Ill and Patients with Pulmonary Disease: Can We
Meet the Requirements of an Aging Population? JAMA 2000; 284:2762-2770.
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We are pleased that the Bureau of Workforce Analysis at Health
Resources and Services Administration (HRSA) has taken an interest in
this issue and will soon be releasing a study on pulmonary/critical
care physician supply in the United States. We believe the HRSA study
will confirm an existing shortage of pulmonary and critical care
physicians. Should the HRSA study confirm a shortage of physicians,
Congress will then need to take action to address the shortage before
it reaches a crisis. Potential steps Congress could take include:
increasing existing caps on training positions for pulmonary/critical
care, expanding the J-1 visa waiver program, increasing class sizes in
medical schools, and expanding loan forgiveness and accelerated
deductions of interests on loans for students enrolled in critical care
training programs.
LUNG-DISEASE OPPORTUNITIES AND ADVANCES
Pulmonary researchers have made significant advances in lung
disease research. The following are identified areas of lung disease
research that the NHBLI has said it will be exploring in the next year:
--HIV-Related Pulmonary Complications. As mentioned earlier, the rate
of persons with HIV who are also contracting TB are steadily
growing. We applaud the NHLBI for its research on the roles of
co-infections, immune factors and genetic predisposition in the
pathogenesis of HIV-related pulmonary disease.
--COPD and lung cancer research. Nearly a quarter of a million
Americans die each year of either COPD or lung cancer. NHLBI
hopes to address the gap in knowledge that a common
pathogenetic mechanism may be involved as a risk factor for
COPD and lung cancer. The research will focus on a search for
the similarities of the cellular and molecular mechanisms that
lead to COPD and lung cancer. This new research could have
important implications for the prevention and management of
both diseases.
--Sleep Apnea or Sleep Disordered Breathing (SDB). SDB is a medical
condition associated with upper airway obstruction and
cessation of breathing that leads to repeated episodes of
asphyxia during the night. SDB is very prevalent in the U.S.
population with conservative estimates set at 2 percent to 3
percent of all children, 5 percent of middle age adults, and in
excess of 15 percent of the aged population. The major health-
related implications and morbid consequences of SDB include the
neurocognitive and cardiovascular morbidities, depression,
hypertension, increased frequency of myocardial infarction and
stroke, and increased frequency of motor vehicle accidents due
to the increased sleepiness induced by the disruption of sleep
in SDB patients. Both the frequency of SDB and its consequences
are anticipated to increase in the next decades due to the
aging of the overall U.S. population and the ongoing epidemic
of obesity that afflicts our country. The ATS supports the need
for more research into the causes, diagnosis and treatment of
SDB.
In conclusion, lung disease is a growing problem in the United
States. It is this country's third leading cause of death, responsible
for one in seven deaths. The lung disease death rate continues to
climb. Overall, lung disease and breathing problems constitute the
number one killer of babies under the age of one year. Worldwide,
tuberculosis kills 3 million people each year, more people than any
other single infectious agent. The level of support this Subcommittee
approves for lung disease programs should reflect the urgency
illustrated by these numbers.
______
Prepared Statement of the Centers for Disease Control and Prevention
(CDC) Coalition
The CDC Coalition is a nonpartisan association of more than 100
groups committed to strengthening our nation's prevention programs. Our
mission is to assure that health promotion and disease prevention are
given top priority in federal funding, to support a funding level for
the Centers for Disease Control and Prevention (CDC) that enables it to
carry out its prevention mission, and to assure an adequate translation
of new research into effective state and local programs. Coalition
member groups represent millions of public health workers, researchers,
educators, and citizens served by CDC programs. We are grateful for the
opportunity to present our views to the Subcommittee.
It is time to support CDC as an agency--not just the individual
programs that it funds. In the best professional judgment of the CDC
Coalition--given the challenges and burdens of chronic disease,
terrorism and disaster preparedness, new and re-emerging infectious
diseases and our many unmet public health needs and missed prevention
opportunities--the agency will require funding of $8.65 billion to
support its mission for fiscal year 2006.
The CDC Coalition is pleased with the support the Subcommittee has
given to CDC programs over the years, including your recognition of the
need to fund chronic disease prevention, infectious disease
preparedness, and environmental health programs. By translating
research findings into effective intervention efforts in the field, the
agency has been a key 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. From anthrax to West Nile to smallpox to SARS, the Centers
for Disease Control and Prevention is 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.
In fiscal year 2002, Congress appropriated $7.7 billion for CDC. In
fiscal years 2003, 2004 and 2005, Congress appropriated $7.1 billion,
$7.2 billion, and $8.0 billion, respectively. Now the President's
proposed budget for the agency in fiscal year 2006 is $7.5 billion--a
$500 million cut from last year's funding, and $200 million below the
fiscal year 2002 funding level. We are moving in the wrong direction.
Public health is being asked to do more, not less. As far as we can
tell, in light of the current workload placed on the public health
service--in addition to the threat of emerging diseases such as the
avian flu--it simply does not make any sense to cut the budget for CDC
at a time when the threats to public health are so great. Funding
public health outbreak by outbreak is not an effective way to ensure
either preparedness or accountability.
Until we are committed to a strong public health system, every
crisis will force trade offs. For instance, the Administration's recent
reprogramming request to make up for the vaccine shortage with money
originally appropriated by Congress for chronic disease prevention
programs (COPP and the Preventive Health and Health Services Block
Grant) and bioterror preparedness funds is the most recent concrete
example of attention to one disease coming at the expense of another.
CDC serves as the lead agency for bioterrorism preparedness and
must receive sustained support for its preparedness programs in order
for our nation to meet future challenges. In the best professional
judgment of CDC Coalition members, given the challenges of terrorism
and disaster preparedness, and our many unmet public health needs and
missed prevention opportunities, the agency will require at least level
funding to adequately fulfill its mission for fiscal year 2006.
We are concerned that the President's budget proposes cutting the
state and local capacity grants for terrorism by almost $130 million,
and eliminating the anthrax preparedness program. We encourage the
Subcommittee to restore these cuts to ensure that our local communities
can be prepared in the event of an act of terrorism.
Heart disease remains the nation's number one killer. In 2002,
696,947 people died of heart disease (51 percent of them women),
accounting for 29 percent of all U.S. deaths. Stroke is the third
leading cause of death after heart disease and cancer and a leading
cause of serious, long-term disability. In 2002, stroke killed 162,672
people (62 percent of them women), accounting for about 1 of every 15
deaths. In 1998, the U.S. Congress provided funding for CDC to initiate
a national, state-based heart disease and stroke prevention program
with funding for eight states. Currently, 32 states and the District of
Columbia are funded, 21 as capacity building programs and 12 as basic
implementation programs. The CDC Coalition recommends $55.6 million for
the Heart Disease and Stroke Prevention Program.
The CDC carries out crucial work to reduce the incidence, morbidity
and mortality of cancer through prevention, early detection, treatment,
rehabilitation, and palliation. Cancer is the second leading cause of
death in the United States. In 2004, about 1.4 million new cases of
cancer will be diagnosed, and more than 563,700 Americans--about 1,500
people a day--will die of the disease. The financial cost of cancer is
also significant. According to the National Institutes of Health, in
2003, the overall cost for cancer in the United States was $189.5
billion: $64.2 billion for direct medical expenses, $16.3 billion for
lost worker productivity due to illness, and $109 billion for lost
worker productivity due to premature death. Among the ways they are
fighting cancer, the CDC funds programs to detect colorectal, ovarian,
prostate, skin, breast and cervical cancers, as well as maintain a
cancer registry to track cancer incidence. The CDC coalition recommends
$385 million for the Cancer Prevention and Control activities of the
CDC.
Nearly 16 million Americans have diabetes, including over 5 million
who don't know it. During 1980-2002, the number of people with diabetes
in the United States more than doubled, from 5.8 million to 13.3
million. Although more than 18 million Americans have diabetes, 5.2
million cases are undiagnosed. Each year, 12,000-24,000 people with
diabetes become blind, more than 42,800 develop kidney failure, and
about 82,000 have leg, foot, or toe amputations. Preventive care such
as routine eye and foot examinations, self-monitoring of blood glucose,
and glycemic control could reduce these numbers. Without additional
funds, most states will not be able to create programs based on these
new data. States also will continue to need CDC funding for diabetes
control programs that seek to reduce the complications associated with
diabetes. The CDC Coalition recommends $150 million for CDC's diabetes
prevention efforts.
Over the last 25 years, obesity rates have doubled among United
States adults and children, and tripled in teens. Obesity, diet and
inactivity are cross-cutting risk factors that contribute significantly
to heart disease, cancer, stroke and diabetes. The CDC funds programs
to encourage the consumption of fruits and vegetables, to get
sufficient exercise, and to develop other habits of healthy nutrition
and activity. The CDC Coalition recommends $70 million for CDC's
Division of Nutrition and Physical Activity.
Arthritis and chronic joint symptoms affect nearly 70 million
Americans, or about one of every three adults, making it one of the
most prevalent diseases in the United States. As the population ages,
this number will increase dramatically. The CDC Coalition recommends
$25 million for the arthritis programs of the CDC.
More than 400,000 people die prematurely every year due to tobacco
use. The CDC's tobacco control efforts seek to prevent tobacco addition
in the first place, as well as help those who want to quit with ways to
do so. The CDC Coalition recommends $145 million for the CDC's tobacco
control programs.
Each day 4,400 young people try their first cigarette. At the same
time, daily participation in high school physical education classes
dropped from 42 percent in 1991 to 32 percent in 2001. Almost 80
percent of young people do not eat the recommended number of servings
of fruits and vegetables, while nearly 30 percent of young people are
overweight or at risk of becoming overweight. And every year, almost
800,000 adolescents become pregnant and about 3 million become infected
with a sexually transmitted disease. School health programs are one of
the most efficient means of correcting these problems, shaping our
nation's future health, education, and social well-being. CDC's
Adolescent and School Health program supports coordinated school health
programs that reduce disease risk factors. In 2003, CDC supported 22
state-coordinated school health programs. The CDC Coalition recommends
$82.4 million for school health programs.
The President's budget proposes the elimination of the Childhood
Obesity Prevention Program (COPP), also referred to as the VERB or CDC
Youth Media campaign. The success of the COPP program shows that over
30 percent of the target audience, children ages 9 to 10 years old,
increased their physical activity as a direct result of the VERB media
campaign. This type of success warrants continued funding to empower
our children to respond to the growing concerns of the obesity epidemic
and improve the health of this nation. We encourage the Subcommittee to
restore the cuts and fund the COPP program at $70 million.
Public health programs delivered at the local level should be
flexible to respond to local needs. Within an otherwise-categorical
funding construct, the Preventive Health and Health Services Block
Grant is the only source of flexible dollars for states and localities
to address their unique public health needs. The track record of
positive public health outcomes from Prevention Block Grant programs is
strong, yet so many requests go unfunded. However, the President's
budget proposes the elimination of the Preventive Health and Health
Services Block Grant. As states use their Prevention Block Grant
dollars to address high priority needs such as emerging and chronic
diseases, child safety seat programs, suicide prevention, smoke
detector distribution and fire safety programs, adult immunization,
oral health, worksite wellness, infectious disease outbreaks, food
safety, emergency medical services, safe drinking water, and
surveillance needs--we can scarcely understand why the Prevention Block
Grant should be eliminated. In fact, the Prevention Block Grant has
been flat funded since fiscal year 2000. We encourage the Subcommittee
to restore the cuts and fund the Prevention Block Grant at $132
million.
Much of CDC's work in chronic disease prevention and health
promotion, and in other programs areas, is guided by its prevention
research activities. Prevention research considers the factors
associated with illness, disability, and injury, such as lifestyles or
exposure to environmental toxins, and the best ways to address these
factors and thereby promote health. By answering these questions,
prevention research links biomedical research, which focuses on human
physiology and disease treatment, to policies and public health
interventions that promote wellness and reduce the need for treatment.
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. These activities are critically important, as CDC estimates
that between 800,000 and 900,000 Americans currently are living with
HIV. Also, the number of people living with AIDS is increasing, as
effective new drug therapies are keeping HIV-infected persons healthy
longer and dramatically reducing the death rate. Prevention of HIV
transmission is our best defense against the AIDS epidemic that has
already killed over 400,000 U.S. citizens and is devastating the
populations of nations around the globe, and CDC's HIV prevention
efforts must be expanded.
Elimination of tuberculosis and sexually transmitted diseases
(STDs), especially syphilis, is now within our grasp. These welcome
opportunities, if adequately funded now, will save millions in annual
health care costs in the future. Untreated STDs contribute to infant
mortality, infertility, and cervical cancer. State and local STD
control programs depend heavily on CDC funding for their operational
support.
CDC conducts the National Health and Nutrition Examination Survey
(NHANES), the only national source of objective health data to provide
accurate estimates of diagnosed and undiagnosed medical conditions in
the population. NHANES is a unique collaboration between CDC, the
National Institutes of Health (NIH), and others to obtain data for
biomedical research, public health, tracking of health indicators, and
policy development. Through physical examinations, clinical and
laboratory tests, and interviews, NHANES assesses the health status of
adults and children in the United States. Mobile exam centers travel
throughout the country to collect data on chronic conditions,
nutritional status, medical risk factors (e.g., high cholesterol level,
obesity, high blood pressure), dental health, vision, illicit drug use,
blood lead levels, food safety, and other factors that are not possible
to assess by use of interviews alone. Findings from this survey are
essential for determining rates of major diseases and health conditions
and developing public health policies and prevention interventions.
We must address the growing disparity in the health of racial and
ethnic minorities. CDC's REACH 2010 Demonstration Program, Racial and
Ethnic Approaches to Community Health (REACH), helps states address
these serious disparities in infant mortality, breast and cervical
cancer, cardiovascular disease, diabetes, HIV/AIDS and immunizations.
The CDC Coalition recommends $50 million for the REACH program.
The CDC Coalition is requesting a $5 million increase, for an
appropriation of $46 million for Steps to a HealthierUS (STEPS)
program. Additional resources will allow for the creation of programs
in more states. Furthermore, while the President's budget request
includes $1.5 million to support the YMCA Pioneering Healthier
Communities initiative, $3 million is needed to fully fund and continue
to expand this important effort. This would enable the funding 20 NEW
Pioneering Healthier Community projects with one-time start up grants;
provide funding for a conference in 2005 to train these community
leadership teams, and establish an office within the Centers for
Disease Control and Prevention that would assist YMCAs, non-profits and
local/state health departments in initiating, evaluating and sustaining
healthy community change efforts.
CDC oversees immunization programs for children, adolescents and
adults, and is a global partner in the ongoing effort to eradicate
polio worldwide. The value of adult immunization programs to improve
length and quality of life, and to save health care costs, is realized
through a number of CDC programs, but there is much work to be done and
a need for sound funding to achieve our goals. Influenza vaccination
levels remain low for adults. Levels are substantially lower for
pneumococcal vaccination. Significant racial and ethnic disparities in
vaccination levels persist among the elderly. Childhood immunization
programs at CDC also need a funding boost, to ensure sufficient
purchase and delivery of the recently-approved varicella and
pneumococcal vaccines. In addition, developing functional immunization
registries in all states will be less costly in the long run than
maintaining the incomplete systems currently in place.
Injury at work remains a leading cause of death and disability
among U.S. workers. During the period from 1980 through 1995, at least
93,338 workers in the United States died as a result of injuries
suffered on the job, for an average of about 16 deaths per day. The
Bureau of Labor Statistics (Department of Labor) has identified 5,915
workplace deaths from acute traumatic injury in 2000. BLS also
estimates that 5.7 million injuries to workers occurred in 1997 alone;
while NIOSH estimates that about 3.6 million occupational injuries were
serious enough to be treated in hospital emergency rooms in 1998. The
injury prevention and workforce protection initiatives of NIOSH need
continued support.
Of the 4 million babies born each year in the United States, 3
percent are born with one or more birth defects. Birth defects are the
leading cause of infant mortality, accounting for more than 20 percent
of all infant deaths. Children with birth defects who survive often
experience lifelong physical and mental disabilities. An estimated 54
million people in the United States currently live with a disability,
and 17 percent of children under the age of 18 have a developmental
disability. Direct and indirect costs associated with disability exceed
$300 billion.
Created by the Children's Health Act of 2000 (Public Law 106-310),
the National Center on Birth Defects and Developmental Disabilities
(NCBDDD) at CDC conducts programs to protect and improve the health of
children and adults by preventing birth defects and developmental
disabilities; promoting optimal child development and health and
wellness among children and adults with disabilities. We encourage the
Subcommittee to provide at least $135 million in fiscal year 2006
funding for the NCBDDD. This would be a modest increase of $10 million
and would further surveillance, research and prevention activities
related to birth defects and developmental disabilities and improve the
lives of those living with disabilities.
We also encourage the Subcommittee to provide $10 million for CDC's
Environmental Public Health Services Branch to revitalize environmental
public health services at the national, state and local level. As with
the public health workforce, the environmental health workforce is
declining. Furthermore, the agencies that carry out these services are
fragmented and their resources are stretched. These services are the
backbone of public health and are essential to protecting and ensuring
the health and well being of the American public from threats
associated with West Nile virus, terrorism, E. coli and lead in
drinking water.
We appreciate the Subcommittee's hard work in advocating for CDC
programs in a climate of competing priorities. We encourage you to
consider our request for $8.65 billion for CDC in fiscal year 2006.
Members of the CDC Coalition are grateful for this opportunity to
present our views to the Subcommittee.
______
Prepared Statement of the Charcot-Marie-Tooth Association (CMTA)
I want to thank the Subcommittee for this opportunity to share
information about Charcot-Marie-Tooth (CMT) disorder and to express
support for expanded CMT research funded by the National Institutes of
Health (NIH).
BACKGROUND ON CMT
CMT is the most common inherited neurological disorder, affecting
approximately 125,000 Americans. The disease affects people across
their lifespan and is found world wide in all races and ethnic groups.
Unlike muscular dystrophy, which strikes the muscles, CMT adversely
affects the nerves that control the muscles. Individuals afflicted with
CMT slowly lose normal use of their feet and legs and hands and arms as
nerves to the extremities degenerate. The muscles in the extremities
weaken due to the loss of stimulation by the affected nerves, and there
is often a loss of sensory nerve function.
Even though there are different types of CMT, CMT is largely
inherited in an autosomal pattern, meaning when one parent has the
disease (either the father or the mother), there is a 50 percent chance
it will be passed onto each child. The degree of severity can vary
greatly from patient to patient, even within the same family. A child
may or may not be more severely disabled than his or her parent. In
most cases, CMT does not affect life expectancy; however, in certain
forms the disease is more severe: debilitating children so that they
require wheelchairs and even resulting in premature death. There are
currently no effective treatments--although physical therapy,
occupational therapy, and moderate physical activity are beneficial.
STATUS OF CMT RESEARCH
CMT was described over 100 years ago; yet, it has only been in the
last 10 years that rapid advances in our understanding of CMT have
occurred. We now know there are at least 30 different genetic causes of
CMT, and the genetic location of many more types are known.
Identification of the known CMT genes has led to the development of
diagnostic tests, enabling many people to receive a firm diagnosis and
evaluate risk to other family members. Despite identifying more genes
associated with CMT, we are just beginning to understand how the genes,
when abnormal, cause CMT.
To elucidate the complexities surrounding CMT, the CMTA funded the
CMT North American Database, which is housed at Indiana University.
Simply put, the database is a standardized collection of data about a
large number of people with all types of CMT that includes detailed
information about a person's medical, genetic, and family histories.
Having a central repository of standardized information of CMT patients
will accelerate the pace of CMT research, by providing detailed
information about large numbers of uniformly evaluated patients to
qualified researchers. Information contained in the database should
provide a more accurate picture of the range of disability caused by
the various types and sub-types of CMT. The database will also be a
rich resource to tap when drugs or other CMT treatments become
available for testing.
In addition to the database, for several years, CMTA has funded a
quality research program including the sponsorship of many fellowships
and national and international meetings. Ongoing studies are
investigating the molecular basis of various forms of CMT, the
molecular biology of molecules known to cause CMT, relationships
between CMT and other neurodegenerative diseases such as ALS, and the
development of rational clinical therapies to potentially treat CMT.
The National Institutes of Health (NIH), in particular, the National
Institute of Neurological Disorders and Stroke (NINDS), has co-funded
several of these activities.
CMT RESEARCH AND THE NATIONAL INSTITUTES OF HEALTH
Despite providing modest support for a handful of successfully
competed applications, NIH has not launched a coordinated effort to
stimulate more CMT research opportunities nor invested sufficient
resources. In fact, according to the NINDS, from fiscal year 2002 to
fiscal year 2005, funding for CMT research at NINDS declined in real
terms, even as total NIH dollars and funding of neuropathy research
increased.
We are pleased the report that the House and Senate Appropriations
Subcommittees on Labor, Health and Human Services, and Education
requested on CMT research at NIH last year has contributed to the
understanding of relevant trans-NIH activities. Moreover, we are
encouraged by NIH's announcement that it is beginning to plan a
workshop on peripheral neuropathies, but believe that such a workshop
should focus intensively on CMT so that it will result in outcomes
which will be directly relevant to CMT research and could lead to a
relevant program announcement or request for applications on CMT,
specifically.
We are confident the Subcommittee's continued interest in CMT
research will help the NIH and CMT field work together to identify
potential future research opportunities that could be incorporated into
existing trans-NIH initiatives, such as the Blueprint for
Neurosciences, or developed from the upcoming scientific workshop into
a request for applications or program announcement.
Unlike many other areas of research, CMT did not experience a
largess of funding during the NIH doubling period. In spite of this
fact, in recent years, researchers made substantial progress towards
understanding CMT. Yet, additional advances in the field will be
hampered without additional resources from the NIH. This support would
not only benefit CMT. Data from CMT research has the potential to
translate into direct benefits for research into other
neurodegenerative disorders, such as ALS and MS, which devastate
hundreds of thousands of Americans. Therefore, by increasing its
support for CMT, NIH will also be facilitating research into other
neurodegenerative diseases.
FISCAL YEAR 2006 REQUEST
CMTA believes the Administration's request for the NIH in fiscal
year 2006 is inadequate. Providing NIH with less than a one percent
increase, as proposed, would fund the agency well below the rate of
biomedical research inflation index (3.5 percent) and limit the
agency's ability to invest in emerging areas of sciences, such as CMT,
that are in dire need of an infusion of federal support. We urge the
Subcommittee to increase funding for the NIH in fiscal year 2006.
Moreover, we urge the Subcommittee to continue to express an interest
in CMT and work with NIH to ensure that any workshop on peripheral
neuropathies is intensively focused on CMT so that it will result in
outcomes which will be directly relevant to CMT research and could lead
to a relevant program announcement or request for applications on CMT,
specifically. We encourage and strongly support any such program
announcement or request for applications on CMT.
Once again, I thank the Subcommittee for expressing its interest in
CMT and for this opportunity to testify.
______
Prepared Statement of the Coalition for American Trauma Care
The Coalition for American Trauma Care is pleased to provide you
with its recommendations for fiscal year 2006 appropriations for public
health programs that support trauma care, trauma care research, and
injury prevention.
The Coalition for American Trauma Care is a nonprofit association
of national health and professional organizations that seeks to improve
care for the seriously injured patient through improved delivery of
trauma care services, research and rehabilitation activities. The
Coalition also supports efforts to prevent injury from occurring.
Injury is one of the most important public health problems facing
the United States today. It is the leading cause of death for Americans
from age 1 through age 44. More than 145,000 people die each year from
injury, 88,000 from unintentional injury such as car crashes, fires,
and falls, and 56,000 from violence-related causes. Over 85 children
and young adults die from injuries in the United States every day
translating into 30,000 deaths annually. Injury is also the most
frequent cause of disability. Millions of Americans are non-fatally
injured each year leaving many temporarily disabled and some
permanently disabled with severe head, spinal cord, and extremity
injuries. Because injury so often strikes the young, injury is also the
leading cause of years of lost work productivity and, at an estimated
$224 billion in lifetime costs each year, trauma is our nation's most
costly disease.
Attention to injury was never more important in the wake of the
September 11, 2001 attacks. Particularly concerning is our failure, as
a nation, to fully implement organized systems of trauma care in every
state and region which numerous studies have demonstrated are essential
to saving the lives of those who are severely injured. The Health
Resources and Services Administration's (HRSA) completed analysis of a
2002 survey of the states that shows only eight states had
comprehensive trauma systems, 12 states did not have even rudimentary
elements of a trauma system and the remaining states are were in
various stages of incomplete development. And yet a new Harris Poll,
commissioned in November, 2004 to learn about the American public's
views of and support for trauma systems found that:
--Almost everyone recognizes the importance of having a trauma system
in their state.
--Large majorities feel that having a trauma system in place is as
important as, or more important than, having State police or
HAZMAT teams.
--About two in three Americans would be extremely or very concerned
if they learned that the trauma system in their state did not
meet recognized standards.
--Americans are willing to spend their own money to have trauma
centers and trauma systems in place in their states.
--Generally, Americans have high expectations of their states' trauma
centers and systems when it comes to handling natural disasters
or terrorist attacks.
Trauma Care Systems.--The Coalition is opposed to the elimination
of this program in the President's fiscal year 2006 budget request and
urges you to provide $12 million in fiscal year 2006 for HRSA's Trauma-
EMS systems program. This is the amount provided in Senate authorizing
legislation (S. 265) adopted unanimously by the Senate HELP Committee
on February 9. The Trauma-EMS program was funded at $3.0 million in
fiscal year 2001, and $3.5 million for fiscal year 2002-2005. Fully 80
percent of the appropriated dollars, as authorized, is provided for
state grants to further trauma system development. States receive 100
percent federal funding in the first grant year and must provide a 2:1
state to federal match in Year 2, and a 3:1 match in Year 3. States may
do this through in-kind assets. Thus, this seriously under-funded
program provides both critical federal leadership and leverages scarce
state resources.
The program has been making steady progress toward the goal of
extending and strengthening organized systems of trauma care across the
nation. In receiving grants from fiscal year 2002-2004 states had to
assure:
1. A lead agency for the state trauma system.
2. Identification of a state-level trauma system manager.
3. A multidisciplinary statewide trauma stakeholder group.
4. Completion of the 2002 National Assessment (with fiscal year
2001 funding).
5. A statewide trauma system plan.
After these components were in place (or for those states with
advanced trauma systems), the program funded additional state-specific
trauma system projects.
A follow-up assessment of state progress in trauma system
development is being planned for fiscal year 2005.
National Center for Injury Prevention and Control.--The Coalition
supports $168 million in funding in fiscal year 2006 for the National
Center for Injury Prevention and Control which is currently funded at
$138 million. While the Coalition remains a strong supporter of the
National Center for Injury Prevention and Control, members would like
to see more balance in support for unintentional injuries. Significant
increases in the NCIPC in recent years have largely been earmarked for
violence prevention--an important focus for NCIPC after disturbing
incidents in public schools around the country. However, unintentional
injury remains the leading killer of children and young adults and
NCIPC's efforts to translate what works into communities should receive
increased funding. These efforts help prevent, for example, the 20,000
head injuries that occur every year by encouraging the use of bicycle
helmets, and reduce burn-related injuries through smoke detector
implementation programs. The Coalition is also disappointed that as the
funding base for the National Center for Injury Control and Prevention
has grown, the relative amount of funding for acute care research and
demonstration has diminished.
Traumatic Brain Injury (TBI).--Traumatic brain injury is a leading
cause of trauma-related disability. Brain injury is a silent epidemic
that compounds every year, but about which still little is known. The
Coalition is opposed to the proposed elimination of this important
program in the President's fiscal year 2006 budget request and urges
you to provide a total of $30 million for the Traumatic Brain Injury
(TBI) Act, reauthorized as part of the Children's Health Act of 2000
(Public Law 106-310), as follows: $8.715 million for CDC for
surveillance--the legislation directs the CDC to build upon its work
with state registries to collect information to help improve service
delivery to people who have sustained a TBI and to expand monitoring of
the incidence and prevalence of TBI to include all age groups and
individuals in institutional settings. In 2003, the CDC launched the
first phase of the National Information Center for TBI (NCITBI)--a
``one call'' national information center that provides persons with
brain injury and their circles of support toll-free information on
State-specific resources and linkage to services. The CDC has also been
directed to monitor the incidence, outcomes and services needs of
people who sustain injuries, including TBI, during mass casualty
events. The Coalition also supports $15.193 million for the HRSA TBI
State Grant Program--this Program was established to improve access to
health and other services for individuals with TBI and their families
by awarding competitive grants to States and Territories; and $6
million for HRSA Protection and Advocacy Services for persons with TBI.
In addition, the Coalition requests that you include report language to
ensure that the National Institutes on Neurological Disorders and
Stroke (NINDS) within NIH increases core funding to $2 million for each
of its six Centers and that NINDS dedicate $1.0 million for funding a
new coordinating and administrative network for the six Centers. We
also request that NINDS dedicate funding to establish a new category of
training grants to incentivize individuals to pursue careers in TBI
bench science research. NINDS currently funds six bench science
research centers at $1.0 million each. These six Centers represent
groups of renowned basic and clinical physician-scientists working
collaboratively on translational research programs who have developed
the clinically-relevant laboratory models that will serve as the
foundation for future research--it is imperative that we invest in the
infrastructure that is now in place.
Children's EMS.--The Coalition is opposed to the proposed
elimination of this program in the President's fiscal year 2006 budget
request and urges you to provide $20 million in fiscal year 2006, which
maintains the fiscal year 2005 funding level. While children currently
account for up to 30 percent of all emergency department visits and 10
percent of ambulance runs annually, many facilities lack the
specialized equipment needed to care for children. Moreover, many
emergency personnel do not have the necessary education or training to
provide optimal care to children. In order to assist local communities
in providing the best emergency care to children the Children's EMS
program needs to continue and continue at the fiscal year 2005 funding
level.
Preventive Health/Health Services Block Grant (PHHS).--The
Coalition is opposed to the proposed elimination of this program in the
President's fiscal year 2006 budget supports an fiscal year 2006
funding level of $132 million, which maintains the same funding level
as provided in fiscal year 2005. The Coalition rejects the President's
request to eliminate this program because it is duplicative of other
activities within the CDC. The PHHS Block Grant provides flexible
funding to states to allow them to address specific health problems
identified under the Healthy People 2010 assessment process. The
funding allows states to take innovative approaches to address
significant health issues and complements, not duplicates, some of
CDC's other program activities. In addition, the PHHS Block Grant is
the largest single source of federal funding for support basic state
Emergency Medical Services' (EMS) infrastructure--the first line of
defense against death and disability resulting from severe injury.
The Coalition for American Trauma Care is disappointed by the
President's fiscal year 2006 budget which proposes elimination of all
funding for four programs specifically designed to build infrastructure
to ensure that trauma and emergency medical services are available and
appropriate to need: HRSA's Trauma-EMS systems program; HRSA's
Traumatic Brain Injury program; HRSA's Children's EMS program and CDC's
Preventive Health and Health Services Block Grant. If these cuts were
enacted, the results would be devastating for emergency care in the
United States for everyone and particularly for children and those who
have suffered head injury. The burden of injury in America has been
well documented by numerous IOM reports and injury facts speak for
themselves: injury is the leading cause of death and disability for
children and adults up to age 44. While much more can and needs to be
done to prevent injury from occurring at all, we will never be able to
eliminate it entirely. Cutting these programs will not lessen the
injury burden in America; on the contrary, it will significantly
increase the burden of death, disability and direct and indirect health
care costs. We need to increase our investment in these program areas,
not reduce our commitment.
The Coalition greatly appreciates the support the Subcommittee has
provided to trauma related programs in the past and looks forward to
working with the Subcommittee in the coming weeks and months.
______
Prepared Statement of the Coalition for Health Funding
The Coalition for Health Funding is pleased to provide the
Subcommittee with testimony recommending fiscal year 2006 funding
levels for the agencies and programs of the U.S. Public Health Service.
Since 1970, the Coalition's member organizations, representing 40
million health care professionals, researchers, lay volunteers,
patients and families, have been advocating for sufficient resources
for PHS agencies and programs to meet the changing health challenges
confronting the American people. The Coalition for Health Funding is
the nation's oldest, most broadly based alliance focused on the breadth
of discretionary health spending. One of the important principles that
unites the Coalition's members is that the health needs of the nation's
population must be addressed by strong, sustained support for a
continuum of activities that includes biomedical, behavioral and health
services research; community-based disease prevention and health
promotion; health care services for vulnerable and medically
underserved populations; ensuring a safe and effective food and drug
supply; and education of a health professions workforce in adequate
numbers to address the breadth of need.
The Coalition for Health Funding believes the Bush Administration,
and Congress, are missing an important opportunity to improve the
health of all Americans by not making a stronger investment in the
agencies and programs of the U.S. Public Health Service. Federal
spending for public health is low compared to other health spending,
amounting to three percent of total health care spending according to
the Centers for Medicare and Medicaid, and yet an investment in public
health has the potential to slow unsustainable growth in mandatory
costs, reduce lost productivity at work, school and home, and
strengthen every citizen's contribution for a healthy, economically
strong America. Mounting evidence-based studies
(www.thecommunityguide.org; www.aspe.hhs.gov/health/prevention/
prevention.pdf; www.modelprograms.samhsa.gov) demonstrating the
effectiveness of prevention, early intervention, access to basic health
care services and associated cost-savings support investing in public
health programs and activities. Instead, over the past two fiscal years
we have seen an erosion of resources, beginning with the budget phase,
with flat-funding, or cuts in funding, effected for many programs
during the Committee phase of the appropriations process followed by
across-the-board cuts in the omnibus bills for all health programs. The
President's fiscal year 2006 budget request takes these reductions
considerably further by proposing to cut funding for the seven major
public health agencies by $1.1 billion below fiscal year 2005 levels, a
cut of 2.2 percent as the accompanying table shows.
The Coalition for Health Funding urges the Subcommittee on Labor,
Health and Human Services and Education to reject the President's
proposal to reduce the nation's investment in public health and instead
join 425 health organizations that, in letter dated February 1, 2005,
urged the President and Congress to make an investment in public health
of $3.5 billion over fiscal year 2005 levels. As that letter states:
``The health of all Americans is at risk from an unprecedented
range of threats, including: chronic diseases and disabilities,
infectious and food borne illnesses, biological and chemical terrorism,
mental disorders and substance abuse, catastrophic injuries, and a
shortage of healthcare providers and trained public health workers.
``Our nation's public health system will not be able to respond
adequately to these threats without additional resources for the
continuum of medical research, prevention, treatment and training
programs. We urge you to increase discretionary funding for public
health through the Function 550 budget allocation in fiscal year 2006
by $3.5 billion. This investment is critical to improving the health,
safety and security of our nation.''
The following is a partial list of the Coalition's fiscal year 2006
recommendations for specific U.S. Public Health Service agencies. The
Coalition developed these recommendations working with eight other
health coalitions with a more targeted focus on one agency, or major
activities within a particular agency. The table that follows provides
the Coalition's recommendations for all the major public health
agencies.
NATIONAL INSTITUTES OF HEALTH (NIH)
The Coalition supports $30.1 billion in fiscal year 2006 for the
National Institutes of Health, a 6 percent increase over the fiscal
year 2005 funding level, to provide sufficient resources to sustain the
momentum of the recently completed campaign to double the nation's
investment in the promising research supported and conducted by the
NIH. The President's request to provide $28.6 billion, or a .5 percent
increase over fiscal year 2005, is inadequate to fully reap the
research opportunities that the doubling campaign have made available.
NIH is engaging the next generation of biomedical research to integrate
and aggregate basic research, computational capabilities, and clinical
evidence into new cures. Transforming America's health for the 21st
century will require a longstanding commitment from our country and its
leaders. The pace and intensity of this transformation is critical.
Health improvements will only be possible if the medical research
enterprise runs smoothly. Recent discoveries NIH supported research has
made possible include: lifestyle intervention can reduce the onset of
Type II diabetes as occurred in 58 percent of those at risk in a recent
trial; islet cell transplantation has reduced the need for insulin for
250 individuals with juvenile diabetes; low-cost diuretics are as
effective as newer, costlier drugs in lowering high blood pressure that
affects one in four Americans, potentially saving money and enhancing
compliance; newer antidepressant medications are more targeted to
specific brain function resulting in fewer side effects and enhanced
compliance; great advances in understanding the genetic factors in
Alzheimer's Disease holds promise for treatment for the growing number
of Americans afflicted with this devastating disease; new vaccines have
been developed against Haemophilus influenzae type b, pneumococcal
disease, Hepatitis A and B and a new Ebola vaccine is currently in
trial.
Scientific discoveries are the result of a series of incremental
steps that pave the way for future breakthroughs. This process needs
sustained support. A funding increase of only .5 percent will delay
important initiatives leading to earlier, more targeted diagnoses; more
targeted, effective treatment options; and more comprehensive, cost-
effective prevention strategies.
CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC)
The Coalition for Health Funding recommends an overall funding
level of $8.65 billion for CDC in fiscal year 2006. This amount is $616
million more than the fiscal year 2005 funding level and $1.1 billion
more the President's request for fiscal year 2006. The Coalition
believes this is the amount needed to enable CDC to carry out its vital
mission of disease prevention and health promotion.
The Coalition opposes the President's request to cut $130 million
from State and Local Preparedness grants and shift the funds to the
Strategic National Stockpile (SNS) to purchase vaccines and terrorism
countermeasures and fund a new $50 million Mass Casualty Initiative.
Any SNS purchases and new federal terrorism initiatives, if deemed
warranted, should be funded from new resources and not at the expense
of State and Local Preparedness. State and Local health departments are
in the third year of expanded funding for terrorism preparedness. The
effect of a 14 percent cut will seriously jeopardize momentum in
addressing critical capacity needs. Funding should be restored, at
least, to fiscal year 2005 levels and the commitment to rebuilding the
nation's neglected public health infrastructure resumed and sustained.
The Coalition also opposes the proposed elimination of funding for
the Preventive Health and Health Services Block Grant. This funding
provides the only source of flexible funding to state health
departments to help them meet Healthy People 2010 goals. The funding is
often used in innovative ways which complement, not duplicate, other
disease-specific categorical programs. It is also the only source of
funding for many states to monitor well-contamination in poor rural
areas. And it helps states cope with unexpected challenges such as
emerging infectious diseases like West Nile Virus and the health
consequences of disasters. Taken together, the proposed cut in the
State and Local Bioterrorism grant program coupled with the elimination
of the Preventive Block Grant seriously undermines funding for building
State and Local public health capacity, a major Congressional goal
expressed in legislation the year before (Public Law 106-505) and the
year after (Public Law 107-188) the attacks of September 11, 2001.
The Coalition is displeased that most of the rest of the programs
and activities conducted by the CDC are proposed for flat funding in
the President's budget. This is especially egregious for chronic
disease programs at a time when the nation faces an epidemic of obesity
and the ensuing increase in diabetes, heart disease, kidney disease,
cancer, arthritis and other costly diseases. There should be a major
national investment in finding ways to address this problem. The VERB
program, eliminated in the President's budget, provides a model for
reaching young adolescents; it should be replicated.
Similarly, there is insufficient funding provided for infectious
disease programs, most of which are flat-funded. The United States is
still only partially prepared for diseases such as West Nile virus and
pandemic flu, and has not committed funds to combat antimicrobial
resistance commensurate with the scope and severity this problem
presents in the United States. There are 40,000 new HIV infections each
year which means the United States burden of HIV/AIDS is growing, not
stagnant. The President's budget request does include increases for the
National Immunization Program (+$50 million), but the Coalition
supports an increase of $282 million in order to meet the national goal
of vaccinating 90 percent of children and adults.
Finally, the Coalition is, overall, deeply disappointed that the
President's budget request cuts funding for the CDC, the nation's
leading disease prevention/health promotion agency, by more than 6
percent, instead of investing in this agency's potential for saving
health care costs.
HEALTH RESOURCES AND SERVICES ADMINISTRATION (HRSA)
The Coalition for Health Funding recommends an overall funding
level of $7.5 billion for HRSA in fiscal year 2006. This amount is $691
million, or 10 percent, more than the fiscal year 2005 funding level,
and is $1.5 billion more than the President's request. This is the
amount that the Coalition believes is needed to provide adequate
resources for the important programs that HRSA administers that address
access to needed medical and health care services for medically
underserved populations.
The Coalition is pleased that the President has requested a
significant 17 percent increase for Community Health Centers (CHC) for
a total of $2.038 billion. These centers provide basic health care
services for those who are medically underserved in both rural and
inner city communities across the nation. With the number of uninsured
rising, CHCs are more important than ever.
There are many other areas in the HRSA budget that the President
proposes to cut deeply that the Coalition opposes. Chief among these is
the elimination of the Title VII Health Professions Education programs.
These programs are beginning to document formally what their supporters
have long known: that they have a solid track record in recruiting and
training the kind of health professionals that practice in, and stay
in, medically underserved areas. Graduates of these programs are 3-10
times more likely to practice in underserved areas and are 2-5 times
more likely to be minorities. The Title VII programs also have a solid
track record in training needed health professionals in short supply
including pharmacists, allied health professionals, dentists, a range
of public health practitioners, psychologists, and physician
assistants. These shortages will become worse as increasing numbers of
the nation's healthcare workforce begin to retire and the babyboom
generation requires increased care as it ages.
The Coalition also opposes the elimination of five other programs:
Community Access Program, an innovative program of coordinated service
delivery to the uninsured that does not duplicate other available
programs; the Trauma-EMS program which fosters statewide trauma system
development to provide appropriate emergency response for seriously
injured individuals--an important terrorism readiness component; the
Children's EMS program which builds appropriate emergency response
capacity for children; the Traumatic Brain Injury program which helps
brain-injured individuals become successful community participants; the
universal newborn screening program which ensures that all states
screen infants for a core set of screening tests for genetic,
metabolic, hormonal, or functional conditions many of which can be
treated if detected and disability averted. The Coalition also opposes
the $115 million cut to a number of rural programs, and the $101
million cut to the Children's Hospitals Graduate Medical Education
program.
Also disturbing is the proposed level funding for many other
programs. This includes the Nursing Education programs despite
considerable documentation of the nursing shortage crisis. It also
includes the Ryan White CARE Act programs at a time when the United
States is experiencing 40,000 new HIV infections per year. The
President's request for Ryan White programs, when compared to fiscal
year 2005 levels, provides level funding for all titles except for the
AIDS Drug Assistance Program which receives a $10 million increase--not
enough to eliminate waiting lists for the life-saving drugs. The
Maternal and Child Health Block Grant is a critical safety net program
for poor women and special needs children. Flat-funding actually cuts
services at a time when there is an upsurge in the number of families
needing TANF assistance. Family Planning services, which support 4,600
clinics across the United States that provide comprehensive services
including screening for cancer, HIV, and other diseases as well as
contraception and teen pregnancy prevention, are another critical
safety net service that needs increased resources.
Overall, the President proposes to cut existing HRSA programs by
$838 million, or over 12 percent, at a time when the numbers of
uninsured individuals and families is rising and they are turning to
federally funded programs for assistance and care.
SUBSTANCE ABUSE AND MENTAL HEALTH SERVICES ADMINISTRATION
The Coalition for Health Funding recommends an overall funding
level of $3.5 billion for SAMHSA in fiscal year 2006. This amount is
$262 million, or 8 percent, more than the fiscal year 2005 funding
level, and $316 million more than the President's budget request, which
includes a 54 million cut for SAMHSA programs.
The Coalition is pleased that, for the third year, the President
requests an increase for substance abuse treatment, although
substantially less at $25 million than the last two years. However,
once again, the increase comes at the expense of prevention which is
slated for a $15 million cut. Substance abuse is a significant and very
costly national problem involving an estimated 21.6 million Americans--
over 9 percent of the population--and needs investment in both
treatment and prevention. SAMHSA has developed a set of evidence-based
model prevention programs that community-based organizations need help
in implementing. On the treatment side, of the 1 million Americans who
express a need for substance abuse treatment in a regularly conducted
household survey, 273,000 (26 percent) report they made an effort to
obtain treatment, but were unable to do so. Clearly, a stronger
investment--which the President has championed--needs to be made to
provide treatment when it is sought.
The Coalition is very disappointed that the President's budget cuts
mental health program funding at SAMHSA by $64 million. There is no
additional investment made in response to the findings and
recommendations of the President's New Freedom Commission on Mental
Health, the first such commission in over 25 years. The Commission
advised the President that youth with mental and emotional problems
face enormous access barriers and that an alarming 80 percent of youth
in juvenile detention facilities have mental disorders. Yet the
President's budget cuts the Jail Diversion program in half and the
successful Youth Violence Prevention program by $27 million. These cuts
should not be accepted in the aftermath of the Red Lake school massacre
in Minnesota.
The Coalition sincerely appreciates this opportunity to provide its
fiscal year 2006 funding recommendations to the Subcommittee for the
agencies and programs of the U.S. Public Health Service. The
Coalition's recommendations for all of the public health agencies are
provided in the accompanying table. The Coalition, and its member
organizations, look forward to working with the Subcommittee in the
weeks ahead to improve the health of all Americans.
COALITION FOR HEALTH FUNDING 2006 RECOMMENDATIONS
[Dollars in millions]
--------------------------------------------------------------------------------------------------------------------------------------------------------
President's Percent
dollar President's Dolllar Percent
President's request request CHF difference CHF difference CHF
Agency Fiscal request fiscal year fiscal year recommendation recommendation recommendation
year 2005 fiscal year 2006- 2006- fiscal year fiscal year fiscal year
2006 fiscal year fiscal year 2006 2006-fiscal 2006-fiscal
2005 2005 year 2005 year 2005
--------------------------------------------------------------------------------------------------------------------------------------------------------
NIH \1\.............................................. $28,444 $28,590 +$146 +0.5 $30,150 +$1,706 +6.0
CDC \2\.............................................. 8,034 7,543 -491 -6.1 8,650 +616 +7.7
HRSA \1\............................................. 6,809 5,972 -837 -12.3 7,500 +691 +10.0
SAMHSA \1\........................................... 3,269 3,215 -54 -1.6 3,531 +262 +8.0
AHRQ................................................. 319 319 ........... ........... 443 +124 +38.0
FDA \1\.............................................. 1,450 1,500 +50 +3.4 1,566 +116 +8.0
IHS \1\.............................................. 2,985 3,048 +63 +2.1 3,218 +232 +7.8
--------------------------------------------------------------------------------------------------
Totals......................................... 51,310 50,187 -1,123 -2.2 55,058 +3,747 +6.8
--------------------------------------------------------------------------------------------------------------------------------------------------------
\1\ Reflects Total Budget Authority.
\2\ Reflects Total Program Level.
______
Prepared Statement of the Crohn's and Colitis Foundation of America
SUMMARY OF FISCAL YEAR 2006 RECOMMENDATIONS
(1) A 6 percent increase for the National Institute of Diabetes,
and Digestive and Kidney Diseases, and the National Institute of
Allergy and Infectious Diseases and a corresponding increase for
Inflammatory Bowel Disease Research at both institutes.
(2) $1.5 Million for the National Inflammatory Bowel Disease
Epidemiological Program at the Centers for Disease Control and
Prevention.
(3) $25 million for CDC's National Colorectal Cancer Screening
Awareness Program.
INTRODUCTION
Mr. Chairman, thank you very much for the opportunity to present
the views of the Crohn's and Colitis Foundation of America (CCFA). I am
Rodger DeRose, President and Chief Executive Officer of CCFA and I am
honored to represent the people of this country who suffer from Crohn's
disease and ulcerative colitis.
Crohn's disease and ulcerative colitis are chronic disorders of the
gastrointestinal tract which represent a leading cause of morbidity
from digestive illness. Because they behave similarly, these disorders
are collectively known as inflammatory bowel disease (IBD). IBD can
cause severe diarrhea, abdominal pain, fever, and rectal bleeding.
Moreover, IBD related complications can include; arthritis,
osteoporosis, anemia, liver disease, and colon cancer. Crohn's disease
and ulcerative colitis are not fatal, but they can be devastating. We
do not know their cause, and there is no medical cure.
CCFA is a non-profit, voluntary organization dedicated to finding a
cure for Crohn's disease and ulcerative colitis. Throughout its 38-year
history, CCFA has sponsored basic and clinical research of the highest
quality. The Foundation also offers a wide range of educational
programs for patients and healthcare professionals, and provides
support services to assist people in coping with these chronic
intestinal diseases.
We are extremely grateful Mr. Chairman, for your support of IBD
related programs in the fiscal year 2005 Labor-HHS bill. Your
leadership is making a tremendous difference in the lives of the
patients and families that we serve.
RECOMMENDATIONS FOR FISCAL YEAR 2005
(1) National Institutes of Health
CCFA has developed highly successful research partnerships with the
NIH. We are particularly proud of our longstanding collaborations with
the National Institute of Diabetes and Digestive and Kidney Diseases
(NIDDK) which sponsors the majority of IBD research at NIH, and the
National Institute of Allergy and Infectious Diseases (NIAID).
In 2001, a team of investigators from NIDDK, CCFA, and the private
industry announced that they had identified the first gene for Crohn's
disease. This historic breakthrough opens up exciting new pathways of
research focused on the development of improved therapies for Crohn's
disease patients. The research which led to the discovery of the gene
would not have been possible without the strong support that Congress
has provided to the NIDDK in recent years.
Some of the most promising IBD research supported by the NIH has
focused on translating findings from studies conducted on animal models
to humans with IBD. These animal models have enabled researchers to
form the current hypothesis that Crohn's disease and ulcerative colitis
are caused by a malfunctioning immune system, wherein components of the
patient's immune system overreact to normal intestinal bacteria. We
know that people are susceptible to this malfunction because of their
genetic makeup but further research is necessary to determine which
bacteria are responsible, how these bacteria interact with the
intestine's immune system, and which immune system components are
involved.
Mr. Chairman, IBD patients and their families are pinning their
hopes for a better life on medical advancements made through NIH
sponsored research. For this reason, CCFA recommends a 6 percent
increase for NIDDK, NIAID, and NIH overall in fiscal year 2006.
Moreover, CCFA encourages the subcommittee to increase IBD research
funding within NIDDK and NIAID at the same rate as NIH overall.
(2) Centers for Disease Control and Prevention
IBD Epidemiology Program
Mr. Chairman, CCFA estimates that ``up to one million'' people in
the United States suffer from IBD. Unfortunately, we do not have an
exact number; due to the complicated nature of those diseases, patients
may remain undiagnosed or misdiagnosed for several years.
One of CCFA's main public policy objectives has been the
establishment of a nationwide IBD epidemiological program in
partnership with the Centers for Disease Control and Prevention.
We are extremely grateful for your leadership in providing $750,000
within CDC's National Center for Chronic Disease Prevention and Health
Promotion for this much needed project in the fiscal year 2005 Labor-
HHS bill. This program, which was initially funded through private
support provided to CDC from our Foundation, will further our
understanding of both the prevalence of IBD in the United States, and
the demographic characteristics of this unique patient population.
The cultivation of patient demographic information is critically
important to our biomedical research efforts given that environmental
factors are believed to play a major role in the development and
progression of IBD. If we are able to generate an accurate analysis of
the geographic makeup of the IBD patient population, it will provide us
with invaluable clues about the potential causes of IBD.
CDC, in partnership with our scientific experts, are making
significant progress on the epidemiology study. Phase one of the study
has been completed and is being prepared for publication this summer.
Plans are currently underway to expand the study to other key areas of
investigation. For fiscal year 2006, CCFA respectfully requests an
appropriation of $1.5 million for the continuation of the epidemiology
study within the National Center for Chronic Disease Prevention and
Health Promotion.
Colorectal Cancer Prevention
Finally Mr. Chairman, in addition to coping with either Crohn's
disease or ulcerative colitis, many IBD patients are at high risk for
developing colorectal cancer. As you may know, colorectal cancer is the
third most commonly diagnosed cancer for both men and women in the
United States and the second leading cause of cancer-related deaths.
Because people who have suffered from IBD for more than 8 years are
susceptible to this disease, CCFA has a long history of actively
promoting the benefits of colorectal cancer screening.
Although colorectal cancer is almost entirely curable when detected
early, studies have shown a tremendous need to: (1) inform the public
about the availability and advisability of screening and (2) educate
healthcare providers about screening guidelines. CDC's National
Colorectal Cancer Roundtable is actively working to address these
challenges by partnering with organizations like CCFA to implement a
national public awareness campaign emphasizing the importance of
screening and early detection. Moreover, CDC's ``Screen for Life''
awareness campaign is actively promoting the importance of colorectal
cancer screening via television, radio and print media. CCFA encourages
the subcommittee to provide CDC with $25 million in fiscal year 2006 to
support its colorectal cancer prevention activities.
Once again, Mr. Chairman, thank you for the opportunity to present
the views of Crohn's and Colitis Foundation of America. We look forward
to continuing to work with you on these important issues.
______
Prepared Statement of the Developmental Disabilities Research Centers
Association
Mr. Chairman, on behalf of the Developmental Disabilities Research
Centers Association (DDRCA), I thank you for this opportunity to share
with you and your Committee, some of the exciting achievements that are
happening in the world of developmental disabilities and mental
retardation research. I am Steven F. Warren, Director of the Kansas
Mental Retardation and Developmental Disabilities Research Center at
the University of Kansas and Chair of the Developmental Disabilities
Research Centers Association. First, let me tell you a little about our
Association.
The DDRCA is a national resource that grew out of Congress' mandate
in 1963 to establish ``centers of excellence'' in mental retardation
and developmental disabilities research. With funding from the National
Institute of Child Health and Human Development, our 20 member Centers
represent the nation's first sustained and integrated effort to prevent
and treat disabilities through biomedical and behavioral research.
Today, we are the world's largest concentration of scientific expertise
in the fields of intellectual and developmental disabilities. We
believe that our Centers, and the network they form, substantially
foster communication, innovation, and excellence in research. We work
collaboratively on a number of research projects, and together with the
Society for Developmental Pediatrics, produce the quarterly
publication, ``Mental Retardation and Developmental Disabilities
Research Reviews.'' Each edition highlights the exciting new research
on a developmental disability.
Our research Centers are located within premier research intensive
universities and often are affiliated with major medical centers which
provide academic, scientific and often clinical expertise as well as
institutional support. Collectively, our work represents a
multidisciplinary, vigorous, and innovative research program directed
at understanding, treating and eventually substantially reducing the
incidence of developmental disabilities including mental retardation.
Additionally, our investigators are engaged in a very important
mission--training the next generation of scientific investigators and
clinicians in this area of great importance to America's children and
families.
Although a significant portion of the research portfolios at the
Centers consists of fundamental studies that are directed at
understanding the biological and behavioral processes in animal models
and human subjects, each Center directs considerable attention toward
seeking solutions to practical issues and problems. Our connection to
the University Centers for Excellence in Developmental Disabilities
(UCEDDs) is critical in relating our research to practice. The scope of
the research conducted at the Centers encompasses every known major
dimension of mental retardation.
Over the last three decades there has been a huge payoff in the
federal investment in the Developmental Disabilities Research Centers.
Many disorders that cause intellectual disabilities can be prevented or
treated to improve developmental outcomes. The Centers' scientific
achievements have helped improve quality of life for individuals and
families affected by disabilities. Among the most exciting aspects of
this research is the work that is getting close to understanding the
fundamental biological mechanisms that contribute to many of these
disabilities with development of interventional strategies. I am
pleased to share some examples with you.
Brain Imaging Technologies.--We are all familiar now with magnetic
resonance imaging or MRI technology. Many of us have experienced this
technology as it has been used increasingly over the past 12 years as a
way for physicians to see increasingly higher resolution images of the
brain as well as to measure local brain activity and metabolism.
Functional magnetic resonance imaging (fMRI) provides a way to examine
brain processing during complex behavior such as thinking and reading.
Signal abnormalities associated with several diseases and syndromes
that dramatically affect behavior and cognition have been
characterized, including fragile X syndrome, Rett syndrome, Turner
syndrome, Tourette syndrome and neurofibromatosis.
At the Kennedy Krieger Institute (KKI), the Mental Retardation
Developmental Disability Research Center at Johns Hopkins University in
Baltimore, MD., they have utilized functional brain imaging to
establish a link between the lowering of vocabulary in children with
neurofibromatosis (NF-1) and enlargement of the cerebrum. More detailed
imaging techniques called spectroscopy imaging was then used to locate
the specific regions of the brain that linked with the loss of
vocabulary and cognitive functioning. A similar type of cerebral
enlargement was discovered in autistic children by investigators at the
University of North Carolina Mental Retardation Research Center.
Understanding the processes of increased rates of brain growth will
help lead researchers to finding preventive measures to stop the
results of loss of IQ or vocabulary in these children.
Brain Growth and Development.--We are aware that the brain develops
complex circuitry both under the guidance of internal genetic cues and
in response to the brain's interaction with the outside world through
activity and experiences ranging from simple sensation to complex
behavioral interaction between the child and others. Developmental
problems result when genetic errors occur either through the expression
of an inherited copy of a deleterious gene, through chromosomal
abnormalities or when environmental factors may modify the expression
pattern of genes. In addition, the developing brain is particularly
sensitive to exposure to environmental toxins such as alcohol or lead.
These insights into brain development provide a foundation for
prevention through biomedical and behavioral intervention. During the
initial formation of the brain in the fetus and in early postnatal life
of the child, new nerve cells are forming and each one must extend fine
processes that migrate through the brain to their correct targets and
then they must establish the right connections (synapses) and assemble
those synapses into the functional networks of communication sites
whereby each cell in our brain talks to the next and communicates with
the outside world. Many developmental disorders such as neonatal
seizures that occur due to the mislocation of the brain's nerve cells
to abnormal sites (heterotopia) or due to the failure of synapses to
form their proper structural arrangements through a refinement process
such as fragile X syndrome, result from the failure of synaptic
connections to properly form in the developing brain. In order to
understand a brain that has developed abnormally, leading to mental
retardation or other developmental disabilities, it is necessary to
understand the normal processes that guide this development.
At the Civitan International Research Center and Mental Retardation
Research Center at the University of Alabama at Birmingham,
investigators have discovered a new particle that forms in nerve cells
during their earliest stages of development that brings together all of
the necessary molecules to allow formation of a newborn synapse. At the
University of North Carolina Mental Retardation research Center,
investigators have determined the chemical pathways for regulating the
migration of newborn neurons' in the developing brain. Several groups
of investigators have determined how the fragile X gene product protein
plays a role in the normal refinement of synapses in the normal
developing brain and the consequences of interference with this
protein's production in humans with fragile X syndrome and animal
models. The functional consequences of this abnormal development
include abnormally strong responses to sensory stimuli as determined by
investigators from the University of Colorado Mental Retardation/
Developmental Disabilities Research Center. This work is providing the
scaffolding for designing strategies for specifically targeting early
molecular events in the formation of the brain that may go awry in
order to prevent or correct disorders of synaptic development.
Language and Communication.--Language and communication are key
aspects in a human's ability to function in society. Researchers now
know that the first 48 months of life is an optimal period in brain
development for language acquisition and therefore is a period when
intervention can have the greatest impact on a child's overall
communication ability. With this in mind, researchers are asking the
question, ``Are there linkages between language impairments and various
developmental disabilities or syndromes?''
The Kansas Mental Retardation Developmental Disability Research
Center asked a more specific question. ``Do some children with Specific
Language Impairment (SLI) and children with some forms of autism share
a genetic relationship?'' Research conducted in Kansas suggests that
this may be the case. Children with SLI often show a particular grammar
deficit, an inability to accurately mark tense in the sentences they
produce. Research reveals that this deficit may even be inherited.
Collaboration with researchers at the Shriver Center Mental Retardation
Research Center in Massachusetts shows that children with autism were
also found to exhibit this tense-marking deficit. On the other hand,
collaboration with researchers at the University of Louisville in
Kentucky demonstrated that children with William's syndrome do not show
this deficit. Researchers at the University of Texas Health Sciences
Center in Houston have found that in dyslexic children, remedial
training is helpful and that this training results in changes in
patterns of brain activation similar to those seen in proficient
readers. This work will ultimately lead to better identification and
effective interventions to limit the disability caused by these
disorders.
Early Identification and Intervention.--Researchers are learning
that early intervention as well as early identification of a problem
can lead to dramatically different life outcomes for a child and his/
her family. At the Civitan International Research Center at the
University of Alabama at Birmingham MRRC, investigators have begun
using a dramatic new training regiment in children with cerebral palsy.
This therapy termed pediatric constraint induced intensive therapy
(PCIIT) involves limiting the child's use of the most affected limb
with intensive training of the other limb over several weeks. Similar
to its beneficial effect in adults who have experienced stroke, this
therapy results in improved use of the trained limb. Investigators will
evaluate whether this therapy in children results in similar massive
functional reorganization of the brain as occurs in adult stroke
patients. The Mental Retardation Research Center at the University of
Washington in Seattle, has devoted a great deal of its research to
early intervention studies. Behavioral scientists there have enhanced
the ability to recognize autism in the first two years of life. The new
neuropsychological and brain-imaging findings in autism indicate that
the severity observed reflects different underlying neurobiological
bases that can be readily identified; these findings may now help focus
early intervention programs. Other investigators in this field have
identified and characterized the unique peer interaction deficits
experienced by a vast majority of young children with developmental
disabilities. Researchers who study early intervention developed a
methodology to evaluate parent/child interactions using feeding and
teaching scales, a methodology that has been extremely useful in
identifying problem areas for children who are at risk. Researchers at
the Waisman Mental Retardation Research Center at the University of
Wisconsin in Madison, Wisconsin, have developed a method using gene
sequencing technology to determine if children suffer from a rare but
progressive disorder in children that has profound effects on cognitive
development, Alexander's disease. By comparing their results with gene
analysis to those obtained with more conventional clinical and fMRI
analysis, these investigators have determined that a more definitive
early diagnosis can be made with modern genetic tests. This work is
contributing to our ability to identify and treat developmental
disorders earlier and more effectively.
Genetics.--About 40 to 60 percent of known causes of moderate to
severe mental retardation have genetic origins. Researchers are working
on DNA probes designed to identify specific genes, to distinguish
abnormal genes, and to identify genes responsible for specific
disabilities such as Duchenne muscular dystrophy. Investigators have
succeeded in mapping genes responsible for disabilities caused by
enzyme defects, storage diseases, and other inborn errors of
metabolism. Researchers have identified genes located on chromosome 21
known to be associated with Down syndrome and Alzheimer's disease.
Researchers at the Baylor College of Medicine Mental Retardation
Research Center in Houston, TX have discovered an X chromosome-linked
gene that is associated with a large percentage of patients with Rett
syndrome a neurodevelopmental disorder that primarily affects infant
girls (the leading cause of mental retardation in girls) causing loss
of speech, purposeful hand movements, seizures, ataxia and apraxia,
episodes of apnea (breath holding) and sometimes death. Utilizing a
mouse model, investigators at Baylor are investigating which genes are
silenced in Rett and the underlying biological consequences of this
process on neural development and synaptic function. Mutations in the
same gene that causes Rett syndrome can also lead to other
developmental disorders including autism and mild mental retardation as
well as bipolar disorders and schizophrenia. Researchers at the
University of Kansas Institute for Child Development have determined
that children with Prader-Willi syndrome (the most common known form of
genetically caused obesity) who have a life threatening eating disorder
also display obsessive compulsive disorder (OCD). Both of these
disorders may be caused by a gene defect on chromosome 15 causing lack
of inhibition of brain centers involved with OCD and other brain
centers that regulate growth hormone.This work is giving investigators
a rich source of animal models to precisely identify the mechanisms
whereby genetic defects cause developmental disorders and is providing
the potential therapeutic targets for correcting the consequences of
these disorders in humans.
While we have come a long way over the last 30 years, we still have
far to go. With knowledge generated by the DDRCs, we will be able to:
--Use brain imaging and genetic methods to better understand the
causes of specific disabilities and design strategies for
treatment.
--Develop new therapies to prevent or reverse some of the symptoms of
specific disabilities.
--Better understand the process of brain cell development and
enrichment through studying the interplay of the brain's own
chemistry with a child's experiences.
--Prevent many types of developmental disabilities by treating
maternal infections and viruses transmitted to their infants.
--Capitalize on the brain's natural ``plasticity'' to optimize brain
development in children born with developmental disabilities
through early intervention or by extending the period of brain
development.
--Design learning environments so all children have improved academic
outcomes, including those with learning and intellectual
disabilities.
--Determine which child with a disability will respond best to which
speech or communication learning approach.
--Develop culturally competent psychological and medical assessment
and treatment procedures for children born into minority
families.
--Prevent and treat atypical behavior among children and adults with
disabilities who are especially prone to such difficulties,
such as children with autism, fragile X syndrome, or Rett's
syndrome.
--Assist families in preparing their adult sons and daughters with
disabilities for successful lives of their own and prepare
older people with developmental disabilities for coping with
the normal process of aging.
To address our concerns, we respectfully ask the Committee to
increase NIH funding to $30.067 billion for fiscal year 2006.
Additionally, we ask that you increase funding for NICHD to the level
of $1.34 billion for fiscal year 2006.
Again, I thank you Mr. Chairman for taking time to learn about the
DDRC network and the scope of work being conducted at these Centers
across the nation. Together we believe that we are making strong
headway in finding solutions to the many diseases and disabilities,
which affect the children and adults of our society. With your
continued support, and that of the Subcommittee, we can make great
strides into the future.
______
Prepared Statement of the Digestive Disease National Coalition
SUMMARY OF FISCAL YEAR 2006 RECOMMENDATIONS
--Provide increased funding for the National Institutes of Health
(NIH) at 6 percent for fiscal year 2006. 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 by 6
percent.
--Continue focus on digestive disease research and education at NIH,
including the areas of Inflammatory Bowel Disease (IBD),
Hepatitis and other liver diseases, Irritable Bowel Syndrome
(IBS), Colorectal Cancer, Endoscopic Research, Pancreatic
Cancer, Celiac Disease, and Hemochromatosis.
--$30 million for the Centers for Disease Control and Prevention's
(CDC) Hepatitis Prevention and Control activities.
--$25 million for the Center for Disease Control and Prevention's
(CDC) Colorectal Cancer Screening and Prevention Program.
Chairman Specter, 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 27 professional societies and patient organizations concerned with
the many diseases of the digestive tract. The Coalition has as its goal
a desire to improve the health and the quality of life of the millions
of Americans suffering from both acute and chronic digestive diseases.
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, Celiac
Disease, and Hemochromatosis.
Mr. Chairman, 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). With respect to the coming fiscal year the DDNC is
recommending an increase of 6 percent ($1.7 billion) to $30.1 billion
for the National Institutes of Health (NIH) and all of its Institutes.
Specifically the DDNC recommends:
--$5.1 billion for the National Cancer Institute (NCI).
--$1.9 million for the National Institute of Diabetes and Digestive
and Kidney Disease (NIDDK).
--$4.66 billion for the National Institute of Allergy and Infectious
Diseases (NIAID).
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 completed 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 1 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. Crohn's disease and ulcerative colitis are
not usually fatal but can be devastating. 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. In 1998, the FDA approved the first drug ever
specifically to fight Crohn's disease, a remarkable milestone. 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 will
continue its work in IBD research. Given the recent advancements in
treatment for these diseases and the increased risk that IBD patients
have for developing colorectal cancer, the DDNC strongly believes that
generating improved epidemiological information on the IBD population
is essential if we are to provide patients with the best possible care.
Therefore the DDNC and its member organization the Crohn's and Colitis
Foundation of America encourage the CDC to initiate a nationwide IBD
surveillance and epidemiological program in fiscal year 2006.
HEPATITIS C: A LOOMING THREAT TO HEALTH
It is estimated that there are over 4 million Americans who have
been infected with Hepatitis C of which over 2.7 million remain
chronically infected. About 10,000 die each year and the Centers for
Disease Control and Prevention (CDC) estimates that the death rate will
more than triple by 2010 unless there is additional research,
education, and more effective treatments and public health
interventions. Hepatitis C infection is the largest single cause for
liver transplantation and one of the principal causes of liver cancer
and cirrhosis. There is currently no vaccine for hepatitis C, and
treatment has limited success, making the infection among the most
costly diseases in terms of health care costs, lost wages, and reduced
productivity. Patients who are older at the time of infection, those
who continually ingest alcohol, and those co-infected with HIV
demonstrate accelerated progression to more advanced liver disease.
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 C 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 hepatitis A, B,
and C.
The DDNC supports $30 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.
Although colorectal cancer is preventable and curable when polyps are
detected early, a General Accounting Office report issued in March 2000
documented that less than 10 percent of Medicare beneficiaries have
been screened for colorectal cancer. This report revealed a tremendous
need to inform the public about the availability of screening and
educate health care providers about colorectal cancer screening
guidelines. In 2003, the New York City Department of Health has
recommended colonoscopy for everyone over age 50 to prevent colorectal
cancer.
The DDNC recommends a funding level of $25 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 2002, an estimated 28,300 people in the United States were found
to have pancreatic cancer and approximately 28,200 died from the
disease. Pancreatic cancer is the fifth leading cause of cancer death
in men and women. Only 2 out of 10 patients will live 1 year after the
cancer is found and only a very few will survive after 5 years.
Although we do not know exactly what causes pancreatic cancer, several
risk factors linked to the disease have been identified:
(1) Age: Most people are over 60 years old when the cancer is
found;
(2) Sex: Men have pancreatic cancer more often than women
(3) Race: African Americans are more likely to develop pancreatic
cancer than are white or Asian Americans
(4) Smoking
(5) Diet: Increased red meats and fats
(6) Diabetes
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 and fickle 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.
The unpredictable bowel symptoms may make it next to impossible to
leave your home. It is difficult to ease the pain than may repeatedly
occur periodically throughout the day. A patient can become reluctant
to eat for fear that just eating a meal will trigger symptoms all over
again. IBS has a broad and significant impact on a person's quality of
life. It strikes individuals from all walks of life and results in a
significant toll of human suffering and disability.
While there is much we don't understand about the causes and
treatment of IBS, we do know that IBS is a chronic complex of systems
affecting as many as 1 in 5 adults. In addition:
(1) It is reported more by women than men
(2) It is the most common gastrointestinal diagnosis among
gastroenterology practices in the United States
(3) It is a leading cause of worker absenteeism in the United
States
(4) It costs the U.S. Health Care System an estimated $8 billion
annually.
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.
CELIAC DISEASE
Celiac Disease is a life-long condition in which the body develops
an allergy to gluten, a protein found in wheat, barley, and rye, which
can result in damage to the small intestine. Celiac disease affects as
many as two million Americans. Onset of the disease can occur at any
age. The common symptoms of Celiac Disease include fatigue, anemia,
chronic diarrhea or constipation, weight loss, and bone pain. The only
treatment for celiac disease is strict adherence to a gluten-free diet.
Undiagnosed and untreated celiac disease can lead to other disorders
such as osteoporosis, infertility, neurological conditions, and in rare
cases cancer. Persons with Celiac Disease often have other associated
autoimmune disorders as well.
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 United States,
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
Commission's subsequent report in 1979 laid the groundwork for
significant progress in the area of digestive disease research.
After almost 25 years, however, the burden of digestive diseases
among the U.S. population remains substantial. The DDNC, therefore,
calls upon Congress to establish a contemporary Digestive Diseases
Commission to address the numerous digestive disorders that remain in
today's diverse population.
The Commission should be comprised of the nation's leading non-
governmental scientists, physicians, and health professionals,
including practicing clinical gastroenterologists and researchers
studying in the field of digestive diseases. Congress should charge the
Commission with the following:
(1) Conducting a comprehensive study of the present state of
knowledge of the incidence, duration, and morbidity of, and mortality
rates resulting from, digestive diseases and of the social and economic
impact of such diseases;
(2) Evaluating the public and private facilities and resources
(including trained personnel and research activities) for the
diagnosis, prevention, and treatment of, and research in, such
diseases; and
(3) Identifying programs (including biological, behavioral,
nutritional, environmental, and social programs) in which, and the
means by which, improvement in the management of digestive diseases can
be accomplished.
The Commission also should develop and recommend a long-range plan
for the use and organization of national resources to effectively deal
with digestive diseases, related nutritional disorders and basic
biological processes and mechanisms in nutrition which are related to
digestive diseases. Finally, the Commission should recommend for each
of the Institutes of the NIH whose activities are to be affected by the
long-range plan estimates of the expenditures needed to carry out each
Institute's part of the overall program.
CONCLUSION
The DDNC understand the challenging budgetary constraints and times
we live in that is 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.
DIGESTIVE DISEASE NATIONAL COALITION
The Digestive Disease National Coalition was founded 25 years ago.
Since its inception, the goals of the coalition have remained the same:
to work cooperatively to improve access to and the quality of digestive
disease health care in order to promote the best possible medical
outcome and quality of life for current and future patients with
digestive diseases.
______
Prepared Statement of the Doris Day Animal League
The Doris Day Animal League represents 350,000 members and
supporters nationwide who support a strong commitment by the federal
government to research, development, standardization, validation and
acceptance of non-animal and other alternative test methods. We are
also submitting our testimony on behalf of People for the Ethical
Treatment of Animals and the Animal Welfare Institute and their 800,000
members and supporters. Thank you for the opportunity to present
testimony relevant to the fiscal year 2006 budget request for the
National Institute of Environmental Health Sciences for the Center for
the Evaluation of Alternative Toxicological Test Methods (NICEATM) for
the Interagency Coordinating Committee for the Validation of
Alternative Test Methods (ICCVAM) activities for fiscal year 2006.
In 2000, the passage of the ICCVAM Authorization Act into Public
Law 106-545, created a new paradigm for the field of toxicology. It
requires federal regulatory agencies to ensure that new and revised
animal and alternative test methods be scientifically validated prior
to recommending or requiring use by industry. An internationally agreed
upon definition of validation is supported by the 15 federal regulatory
and research agencies that compose the Interagency Coordinating
Committee for the Validation of Alternative Methods (ICCVAM), including
the EPA. The definition is: ``the process by which the reliability and
relevance of a procedure are established for a specific use.''
FUNCTION OF THE ICCVAM
The ICCVAM performs an invaluable function for regulatory agencies,
industry, public health and animal protection organizations by
assessing the validation of new, revised and alternative toxicological
test methods that have interagency application. After appropriate
independent peer review of the test method, the ICCVAM recommends the
test to the federal regulatory agencies that regulated the particular
endpoint the test measures. In turn, the federal agencies maintain
their authority to incorporate the validated test methods as
appropriate for the agencies' regulatory mandates. This streamlined
approach to assessment of validation of new, revised and alternative
test methods has reduced the regulator burden of individual agencies,
provided a ``one-stop shop'' for industry, animal protection, public
health and environmental advocates for consideration of methods and set
uniform criteria for what constitutes a validated test methods. In
addition, from the perspective of animal protection advocates, ICCVAM
can served to appropriately assess test methods that can refine, reduce
and replace the use of animals in toxicological testing. This function
will provide credibility to the argument that scientifically validated
alternative test methods, which refine, reduce of replace animals,
should be expeditiously integrated into federal toxicological
regulations, requirements and recommendations.
HISTORY OF ICCVAM
The ICCVAM is currently composed of representatives from the
relevant federal regulatory and research agencies. It was created from
an initial mandate in the NIH Revitalization Act of 1993 for NIEHS to
``(a) establish criteria for the validation and regulatory acceptance
of alternative testing methods, and (b) recommend a process through
which scientifically validated alternative methods can be accepted for
regulatory use.'' In 1994, NIEHS established the ad hoc ICCVAM to write
a report that would recommend criteria and processes for validation and
regulatory acceptance of toxicological testing methods that would be
useful to federal agencies and the scientific community. Through a
series of public meetings, interested stakeholders and agency
representatives from all 14 regulatory and research agencies, developed
the NIH Publication No. 97-3981, ``Validation and Regulatory Acceptance
of Toxicological Test Methods.'' This report, and subsequent revisions,
has become the sound science guide for consideration of new, revised
and alternative test methods by the federal agencies and interested
stakeholders.
After publication of the report, the ad hoc ICCVAM moved to
standing status under the NIEHS' NICEATM. Representatives from federal
regulatory and research agencies and their programs have continued to
meet, with advice from the NICEATM's Advisory Committee and independent
peer review committees, to assess the validation of new, revised and
alternative toxicological methods. Since then, several methods have
undergone rigorous assessment and are deemed scientifically valid and
acceptable. In addition, the ICCVAM is working to streamline assessment
of methods from the European Union (EU) that have already been
validated for use within the EU. The open public comment process, input
by interested stakeholders and the continued commitment by the federal
agencies has led to ICCVAM's success. It has resulted in a more
coordinated review process for rigorous scientific assessment of the
validation of new, revised and alternative test methods.
REQUEST FOR APPROPRIATIONS
On December 19, 2000, the ``ICCVAM Authorization Act'' which makes
the entity a permanent standing committee, was signed into Public Law
No. 106-545. For several years, the NIEHS has provided between $1 and
$2.6 million per fiscal year to the NICEATM for ICCVAM's activities. In
order to ensure that federal regulatory agencies and their stakeholders
benefit from the work of the ICCVAM, it is important to fund it at an
appropriate level. I respectfully urge the Subcommittee to support
increasing appropriations from within NIEHS' existing budget request
for NICEATM for ICCVAM's activities to $3.6 million for fiscal year
2006. This appropriation request includes all FTEs, funding for
independent peer review assessment of test methods and meetings of the
ICCVAM and other activities as deemed appropriate by the Director of
the NIEHS.
REQUEST FOR COMMITTEE REPORT LANGUAGE
The NIEHS should support the NICEATM/ICCVAM in creating a five-year
roadmap for assertively setting goals to prioritize ending the use of
antiquated animal tests for specific endpoints. While the stream of
methods forwarded to the ICCVAM for assessment has remained relatively
steady, it is imperative that the ICCVAM take a more proactive role in
isolating areas where new methods development is on the verge of
replacing animal tests. These areas should form a collective call by
the federal agencies that compose ICCVAM to fund any necessary
additional research, development, validation and validation assessment
that is required to eliminate the animal methods. We also strongly urge
the NICEATM/ICCVAM to closely coordinate research, development and
validation efforts with its European counterpart, the European Centre
for the Validation of Alternative Methods (ECVAM) to ensure the best
use of available funds and sound science. This coordination should also
reflect a willingness by the federal agencies comprising ICCVAM to more
readily accept validated test methods proposed by the ECVAM to ensure
industry has a uniform approach to worldwide chemical regulation.
We also respectfully request the Subcommittee consider the
following report language for the Senate Labor, Health and Human
Services, Education and Related Agencies Appropriations bill:
``In order for the Interagency Coordinating Committee for the
Validation of Alternative Methods (ICCVAM) to carry out its
responsibilities under the ICCVAM Authorization Act of 2000, the
Committee strongly urges the National Institute of Environmental Health
Sciences (NIEHS) to strengthen the resources provided to ICCVAM for
methods validation reviews in fiscal year 2006. ICCVAM and NIEHS
activities must include up-front validation study design, execution and
review to ensure that new and revised test methods, non-animal test
methods, and alternative test methods (such as QSARs, mechanistic
screens, high throughput assays, and toxicogenomics) are deemed
scientifically valid before they are recommended or adopted for use by
federal agencies or used in implementing the National Toxicology
Program's (NTP) Road Map and Vision for NTP's toxicology program in the
21st century.''
Thank you for the opportunity to submit this request on behalf of
our more than 1.1 million members and supporters.
______
Prepared Statement of the Dystonia Medical Research Foundation
SUMMARY OF FISCAL YEAR 2006 RECOMMENDATIONS
Provide increased funding for the National Institute of Health at 6
percent for fiscal year 2006. Increase funding for the National
Institute of Neurological Disorders and Stroke (NINDS), the National
Institute of Deafness and other Communication Disorders (NIDCD), and
the National Eye Institute (NEI) by 6 percent.
FISCAL YEAR 2006 RECOMMENDATIONS FOR NIH
--NIH: $30.1 billion
--NINDS: $1.63 billion
--NEI: $709 million
--NIDCD: $417.6 million
Continue to accelerate funding for intramural and extramural
dystonia research at NINDS.
Provide funding for NINDS to conduct an epidemiological study and
to increase public and professional awareness of dystonia.
Continue to expand NIDCD's intramural and extramural research on
dysphonia.
Continue to expand NEI's intramural and extramural research on
dystonia.
Chairman Specter, thank you for the opportunity to submit testimony
to the Subcommittee on behalf of the Dystonia Medical Research
Foundation (DMRF). Dystonia has affected the lives of many Americans
and we are thankful to be able to provide for you our recommendations
for fiscal year 2006 federal funding with regards to dystonia research.
Dystonia is a neurological disorder characterized by powerful and
painful involuntary muscle spasms that causes the body to twist,
repetitive jerking movements, and sustained postural deformities. There
are several different variations of dystonia, including: focal
dystonias which affect specific parts of the body, such as the arms,
legs, neck, jaw, eyes, vocal cords; and generalized dystonia, affecting
many parts of the body at the same time. Some forms of dystonia are
genetic and others are caused by injury or illness. Dystonia does not
affect a person's consciousness or intellect, but is a chronic and
progressive movement disorder for which, at this time, there is no
known cure. The Foundation estimates that some form of dystonia affects
about 300,000 people in North America.
Even though there is no known cure for dystonia, there are
treatments to lessen the severity of the symptoms of the disease such
as oral medications, botulinum toxin injections, and in some cases
surgery. Having increased access to these medical therapies is becoming
an increasing larger issue for the community as a whole.
In the past few decades, dystonia researchers have made several
exciting scientific advancements and have been able to rapidly turn
laboratory and clinical research into diagnostic examinations and
treatment procedures, directly benefiting those affected. Genetics, in
particular, is opening up a new understanding into the cause and
pathophysiology of the disorder. Thus far, 13 dystonia related genes or
gene loci have been identified. In 1997, the DYT1 gene for childhood
early onset dystonia was identified, and we now have a genetic test
available to confirm diagnosis of this particular type of dystonia.
Most recently, in 2002, the gene for myoclonus dystonia was identified.
However the community is still without a diagnostic test and
misdiagnosis still occurs too frequently.
Deep brain stimulation is a surgical procedure that was originally
developed to treat Parkinson's disease but is now being applied to
severe cases of dystonia. Deep brain stimulation has drastically
improved the lives of dozens of dystonia patients during the past few
years. Individuals who were previously bedridden by muscle spasms and
pain are able to walk without assistance, to speak clearly, to dress
themselves, to get a driver's license, to date, to travel, and to live
the life of an able-bodied person. Deep brain stimulation is currently
used primarily to treat severe cases of generalized dystonia but its
promising role in treating focal dystonias is being explored. Surgical
interventions are a crucial and active area of dystonia research.
RESEARCH, AWARENESS, AND SUPPORT
Now is an exciting time to be involved in dystonia research and
awareness. Researchers are becoming more interested in movement
disorders and dystonia at the National Institutes of Health (NIH), and
research is yielding promising clues for better understanding and
management of this disorder.
One way the Dystonia Medical Research Foundation has advocated for
more research on dystonia, is by funding ``seed'' grants to
researchers. Thus far, the Dystonia Foundation has funded over 370
grants, and 5 fellowships, totaling more than $18 million. Due to our
advocacy there are a growing number of talented researchers dedicated
to understanding the biochemistry of dystonia, genetic causes, new
therapeutics and the necessity of an epidemiology study.
Another primary goal of the Dystonia Foundation is education of
both lay and medical audiences. The Foundation conducts regular medical
workshops and patient symposiums to present, discuss, and disseminate
comprehensive medical and research data on dystonia. In January 2001,
NINDS co-sponsored a genetics and animal models meeting, designed to
involve not only prominent researchers but inviting junior
investigators to participate in the discussions. Additionally, in
October 1996, the NIH was one of our co-sponsors for an international
medical symposium, which featured 60 papers on dystonia and 125
representatives from 24 countries. The Young Investigators Award
Program and the Residency Program are in place to entice emerging
medical professionals into the field of dystonia research and cultivate
future dystonia experts.
Since 1995, over 3,000 educational medical videos have been
distributed to hospitals, medical and nursing schools, and at medical
conventions. In addition to medical and coping publications, we have a
children's video to educate families and increase public awareness of
this devastating disorder in younger populations. Media awareness is
conducted throughout the year, and especially during Dystonia Awareness
Week, observed nationwide from October 14 through 20. Local volunteers
have been successful in securing news stories on dystonia in local
venues as well as national media shows such as Good Morning America,
The Oprah Winfrey Show, and Maury Povich. Through his friendship with
the mother of a dystonia patient, screen star Kirk Cameron has taken an
interest in promoting dystonia awareness, and the Dystonia Foundation
is in the process of investigating the possibility of a public service
announcement and several appearances at fundraising events.
The Dystonia Foundation has over 200 chapters, support groups, and
area contacts across North America. In addition, there are 15
international chairpersons whose mission is to promote awareness,
children's advocacy, development, extension, Internet resources,
leadership, medical education, and symposiums. Furthermore, patient
symposiums are held internationally and regionally to provide the
latest medical and coping information to dystonia patients and others
interested in the disorder.
DYSTONIA AND THE NATIONAL INSTITUTES OF HEALTH
The Dystonia Medical Research Foundation recommends an increase to
$30.1 billion or 6 percent for NIH overall, and a 6 percent increase
for NINDS, and NIDCD. We at DMRF request that this increase for NIH
does not come at the expense of other Public Health Service agencies.
We also urge the Subcommittee to recommend that NINDS provide the
necessary funding for additional extramural research and a large-scale
dystonia epidemiological study. There is also an imperative need for
NINDS to increase its efforts to educate the public and medical
community about dystonia through co-sponsorship of workshops and
seminars. We also encourage the Subcommittee to support NIDCD in its
efforts to revamp its strategic planning process by implementing a
Strategic Planning Group which will help NIDCD as they: consider
applications for high program priority; develop program announcements
and requests for applications; and develop new research areas in the
Intramural Research Program.
The National Institute of Neurological Disorders and Stroke (NINDS)
awarded seven grants in fiscal year 2004 for dystonia research in
response to the Program Announcement, ``Studies into the Causes and
Mechanisms of Dystonia'' (August 2002). In addition, the National
Institute on Deafness and Other Communication Disorders (NIDCD) funded
an eighth study on brainstem systems and their role in spasmodic
dysphonia.
DMRF also supports the many intramural researchers studying
dystonia. Research includes: exploring improved clinical rating scales
for dystonia, elevations of sensory motor training, utilizing botox as
a possible treatment for focal hand dystonia, characterization of
abnormalities in sensory regions of the brain, treatments for spasmodic
dysphonia, anatomy imaging of the affect of dystonia on brain activity,
and exploring the link between laryngitis and spasmodic dysphonia. The
public awareness impact of pianist Leon Fleisher's treatment through
the NIH intramural research program has had a tremendously positive
impact.
NINDS continues to work with dystonia research and voluntary
disease groups in the community. In January 2004, NINDS sponsored a
workshop at Emory University on the Pathology of Dystonia, and in
October 2004, NINDS participated in a workshop to develop a strategic
plan for a series of studies on the epidemiology of dystonia. NINDS
also provided funding in September 2004 to a researcher affiliated with
the Dystonia Medical Research Foundation (DMRF) to provide partial
support for a multi-year series of workshops focused on evolving areas
of research that are critical for the development of therapeutics.
Dystonia is the third most common movement disorder after
Parkinson's Disease and tremor, and effects many times more people than
better known disorders such as Huntington's Disease, muscular dystrophy
and ALS or Lou Gehrig's Disease. We ask that NINDS fund dystonia-
specific extramural research at the same level that it supports
research for other neurological movement disorders.
CONCLUSION
The ultimate goal of the Dystonia Foundation is a cure for
dystonia. Until that goal is realized, we are hungry for knowledge
about the nature of dystonia and for more effective treatments with
fewer side effects. We have amassed many exceptional and diligent
researchers; who are committed to our goal, and our top priority is
funding their very important research. But the Foundation cannot do it
alone. We need federal support though NIH, NINDS, NIDCD and NEI to
continue to fund quality scientific research and eliminate this
debilitating disease.
Combine the thwarting of scientific progress with the decreased
access to therapies and all the progress of the last few years could be
wiped away. We ask that you aggressively support medical research,
specifically for movement disorders and brain research. By doing so,
you are doing a tremendous service for my family and myself and to the
hundreds of thousands of people and families affected by dystonia.
Thank you very much.
THE DYSTONIA MEDICAL RESEARCH FOUNDATION
The Dystonia Medical Research Foundation was founded 25 years ago
and has been a membership-driven organization since 1993. Since its
inception, the goals of the Foundation have remained the same: to
advance research for more effective treatments of dystonia and
ultimately a cure; to promote awareness and education; and support the
needs and well being of affected individuals and their families.
______
Prepared Statement of the FacioScapuloHumeral Muscular Dystrophy
Society, Incorporated (FSH Society, Inc.)
Mr. Chairman, it is a pleasure to submit this testimony to you
today.
My name is Daniel Paul Perez, of Lexington, Massachusetts, and I am
testifying as President & CEO, of the FacioScapuloHumeral Muscular
Dystrophy Society (FSH Society, Inc.) and as an individual who has
lived with facioscapulohumeral muscular dystrophy (FSHD) for nearly 43
years. FSHD is the third most prevalent form of muscle disease. It
affects 1/20,000 people. For men, women, and children the major
consequence of inheriting FSHD is a lifelong progressive and severe
loss of all skeletal muscles. Most people are familiar with Duchenne
muscular dystrophy (DMD) that affects boys. What they are not aware of
is, that in any given moment, there are probably more individuals with
FSHD alive than with Duchenne MD (14,800 vs. 11,000). Recently, the NIH
identified significant gaps in FSHD and a preponderance of DMD research
grants and reported that it only has five (5) active projects on
facioscapulohumeral muscular dystrophy in its entire NIH wide
portfolio.
We have given testimony before the U.S. Congress every year since
1994. We have submitted 26 written testimonies and 5 oral testimonies
to the U.S. Senate and U.S. House Appropriations Subcommittees on
Labor, Health, Human Services and Education and Related Agencies. We
have had considerable report language written in the appropriations
budget from the committees directed to the National Institutes of
Health (NIH) with regard to improving the portfolio at the NIH in FSHD
in nearly every year that we have come before you. In April 2000, prior
to the passage of the ``Muscular Dystrophy CARE Act 2001'' law, we
testified that Congressional directive on FSHD has been and is
repeatedly ignored by the NIH. Since 2001, we have been working closely
with the NIH on the MD CARE ACT 2001 law mandated research plan. Prior
to all of the activity around the MD CARE Act 2001, we noted then that
the NIH is seriously out of compliance with the previous four years of
Congressional Directives. Incredibly, today in the calendar year 2005
heading into the fiscal year 2006 the NIH still is out of compliance
and has an anemic portfolio on FSHD. Going back in time, in 2000 we
reported the NIH had not responded to the past and prior years of
Report Language.
The Report Language for 2000 has been responded to in an untimely
manner and mainly ignored. The 2000 Report Language is as follows:
``The Committee is concerned that NIH has not responded to a previous
request to develop a plan for enhancing NIH research into
Facioscapulohumeral (FSH) disease. The Committee urges NIH to promptly
convene a research planning conference and to establish a comprehensive
portfolio into the causes, prevention, and treatment of FSH disease
through all available mechanisms, as appropriate. The Director is
requested to be prepared to testify on the status of this initiative at
the fiscal year 2001 appropriations hearing.'' (House Report 3037, p.
81 for NINDS, p. 97 for NIAMS.) The status of fiscal year 2000 Report
Language is as follows: FSHD extramural research is almost non-
existent. Intramural research on FSHD is non-existent at NIH.
The Report Language for 1999 has been ignored and the status of the
Report language for fiscal year 1999 is not done. The 1999 Report
Language is as follows: ``The Committee encourages the Institute to
continue and expand research efforts focused on aiding in the diagnosis
and treatment of FSHD.'' (House Report, NINDS Section, p. 103), and,
``The Committee was pleased with the Institute's response to last
year's request which encouraged NIH to stimulate research in the area
of facioscapulohumeral disease (FSHD). However, the Committee notes
that NIAMS has not responded in developing a plan for enhancing FSHD
research, and has not addressed the question of whether an intramural
program in this area would be beneficial. Therefore, the Committee
urges NIH to conduct a research planning conference in the near future
in order to explore scientific opportunities in FSHD research, both
intramurally and extramurally.'' (House Report, NIAMS Section, p. 120-
121.) The status of 1999 Report Language is as follows: FSHD extramural
research is almost non-existent. Intramural research on FSHD is non-
existent at NIH.
The Report Language for 1998 has been ignored and the status of
Report language for fiscal year 1998 is not done. The 1998 Report
Language is as follows: ``The Committee has heard compelling testimony
about facioscapulohumeral (FSH) disease, which causes progressive and
severe loss of skeletal muscle. FSHD research includes aspects such as
molecular genetics, neurological function and muscular dystrophy
involving multiple NIH Institutes. The Committee encourages NIH to take
steps to stimulate research in this area and requests NIH to develop a
plan for enhancing NIH research into FSH disease (FSHD), including an
assessment of whether an intramural research program in this area would
be beneficial.'' (House Report, p. 101.) In 2005, the status of 1998
Report Language is as follows: FSHD extramural research is almost non-
existent. Intramural research on FSHD is non-existent at NIH.
We have worked hard to be sure that our constituency understands
and supports the doubling of the NIH budget and have been very
successful in helping to grow the NIH budget from $10.326 billion to
$28.649 billion. In the same period, we saw FSHD funding increase by
about $1.3 million. This year we will spare you the heartache of our
personal story and the pain and suffering our disease brings in its
train. This year we simply would like you to ask the NIH ``Where did
the money that Congress appropriated and further directed through
appropriations report language go?''
We formerly request a congressional investigation, hearing or some
other Congressional action regarding the absolute failure of the NIH to
increase funding in facioscapulohumeral muscular dystrophy (FSHD). We
have been testifying and generating report language and laws for a
dozen years and have done the yeoman's share in building the base for
FSHD. Despite the specific directions from the Congress in report
language as shown above and with a public law and a federal advisory
committee on muscular dystrophy, the NIH has failed to follow through
on improving FSHD research. Despite our active involvement with the
NIH, the NIH has made the grant review process very secretive, has
turned down opportunities to shed light on the grant decision making
process and still has not responded to congressional letters and
inquiries on the lack of facioscapulohumeral muscular dystrophy (FSHD)
research in the NIH portfolio.
I would like to illustrate what we have done at the FSH Society,
Inc. to improve the funding and portfolio of muscular dystrophy (MD)
and FSHD. The FSH Society (Society) has represented the FSHD community
of researchers and clinicians by the following activities on the Hill,
in the districts, and at the NIH. The FSH Society was the first on the
Hill and at the NIH and before Parent Project Duchenne Muscular
Dystrophy (PPDMD) and MDAUSA for many years since 1993. The Society has
given nearly three dozen Congressional testimonies, in writing and in
person, before the committee to support the doubling of the NIH budget
and to encourage spending on muscular dystrophy. The Society has
succeeded in achieving nearly a dozen sections of report language in
appropriations reports. I have served on numerous NIH research and
planning task forces. The Society has had countless hundreds of
meetings with the Directors, Staff and program officers of the NIH
NINDS, NIAMS, NICHD, NHGRI, ORD and the OD. I served on the five year
long range planning meeting for the NIH NIAMS July 1999. I rewrote the
MD CARE Act 2001 bills to include all muscular dystrophies, ages and
genders, and to establish the Muscular Dystrophy Coordinating Committee
(MDCC) federal advisory committee with public members, and to establish
five national centers for MD not at the exclusion of the basic
research, and much more. The Society has contributed to supporting two
NIH funded FSHD research planning conferences (1997, 2000). I work
closely and collaboratively with NIH program directors. I serve on the
MDCC at the request of Secretary Tommy G. Thompson and Dr. Elias
Zerhouni. I helped write the MDCC NIH research plan submitted to
Congress in summer 2004. I continually encourage FSHD researchers to
submit NIH grant applications for R01, R21, R03, P01, U54, K, T, F
training and mentoring awards and Director's Pioneer Awards. The
Society has given testimony before the Institute of Medicine (IOM) on
improving the Center for Scientific Review (CSR) grant review process
for FSHD. The FSH Society itself has funded $1.1 million in $30,000 a
year fellowships to more than 2 dozen researchers in 5 years, leading
to nearly 7 dozen publications in top tier journals. The FSH Society
helps the NIH FSHD patient registry and existing Wellstone Cooperative
Research Center's as a volunteer health agency.
As a grant agency, the FSH Society has world renowned and leading
clinicians and researchers peer reviewing applications, funding
research, reviewing progress reports and preliminary data and ideas. We
know and have comprehension on the quality of applicants and projects
and data being submitted to you in the NIH grant applications for FSHD
research. I have first hand knowledge of the research as well as our
Nobel quality advisors. I can tell you that researchers of Wellstone,
Nobel, and Howard Hughes stature working on FSHD have had applications
on FSHD rejected by the NIH. However, their applications on other types
of muscular dystrophy have been funded by the very same agency.
Mr. Chairman, as you know, the National Institute of Child Health
and Human Development (NICHD), the National Institute of Arthritis and
Musculoskeletal Disorders (NIAMS), the National Institute of
Neurological Disorders and Stroke (NINDS), and the National Human
Genome Research Institute (NHGRI) are four of the National Institutes
of Health (NIH) institutes called upon by the Muscular Dystrophy
Community Assistance Research and Education Act of 2001 (MD CARE Act
2001) to develop a research plan for muscular dystrophy (MD) research
and education conducted through the National Institutes of Health.
Certainly, other NIH institutes will be called into action where
appropriate such as NHLBI, NEI, NIA, NIMH, NCRR, FIC, and OD.
We rewrote the MD CARE Act 2001 bill from the Muscular Dystrophy
Children's Assistance Research and Education Act 2001, covering only
the childhood form of`Duchenne MD (DMD), to the Muscular Dystrophy
Community Assistance Research and Education Act 2001 covering all forms
of MD. We rewrote the bill to include all forms of muscular dystrophy
affecting men, women, and girls in addition to boys because it was the
right thing to do. Oddly, in 2004 Duchenne MD received a commanding
portion of the muscular dystrophy funding and seven of the other
muscular dystrophy types have little or no funding from the NIH.
An analysis was presented at the December 2004 MD CARE Act mandated
Muscular Dystrophy Coordinating Committee (MDCC) meeting of the 164
grants in the NIH portfolio for future planning purposes related to the
five sections of the muscular dystrophy research plan. Subsequent to
the meeting, I requested the details of the 164 grants used for the
December 1, 2004 discussion from Dr. John Porter (DHHS NIH NINDS), the
Executive Secretary of the MDCC. It is has been communicated that this
compilation was done for planning purposes. From discussions with Dr.
Porter we understand that this view of grants differs from the muscular
dystrophy portfolios as presented by the budget and NIH OCPL offices
regarding the various institutes along coding parameters. The 164
grants were assembled with a degree of scientific subjectivity and
based on professional expertise and judgment. The December 2004 MDCC
meeting yielded an analysis of a subjective grouping of the NIH wide
164 muscular dystrophy grants. Eight were reported related to FSHD. At
that time, the NIH identified that 8 out of 164 grants are on FSHD!
Only eight out of 164 grants are for research on FSHD the third most
prevalent dystrophy that affects men, women and children!
The details of the data of the 164 grants as presented at the
December 1, 2004 MDCC for the grants with funding start dates in 2004
shows 35 grants funded for the 2004 year to that date. The count by
dystrophy for calendar year 2004 is: 18 for Duchenne muscular dystrophy
(DMD), 2 for Limb Girdle muscular dystrophy (LGMD), 1 for Myotonic
muscular dystrophy (DM), 1 for facioscapulohumeral muscular dystrophy
(FSHD), 7 for stem cell research, and 6 for other research. To re-
iterate by dystrophy the total grants awarded in 2004 were: 18 for DMD,
2 for LGMD, 1 for DM, and 1 for FSHD! The most recent year of funding
data shows that the non-Duchenne muscular dystrophy group is not doing
well in terms of numbers of grants and funding. We request a hearing
that focuses on this issue with immediacy and attention to ameliorating
this unequal growth. Oddly, there is an order of magnitude difference
between Duchenne muscular dystrophy (DMD) and the entire complement of
all other dystrophies.
What has happened in facioscapulohumeral muscular dystrophy (FSHD)
research in the five years since the MD CARE Act was signed and what
has happened since the thirteen years since we first started asking NIH
to invest and build the facioscapulohumeral muscular dystrophy
portfolio? NIH has rejected nearly four dozen grant applications on
facioscapulohumeral muscular dystrophy of R03, R21, R01, P01, U54, NIH
Director Pioneer Award Nominations mechanisms and more. The funding
track record speaks for itself. To date in fiscal year 2005 the NIH has
rejected every FSHD application it has received. It is difficult to
attract investigators to FSHD when there is no money made available for
them and it becomes a downward spiral to attract new and promising
investigators.
Incredibly, the NIH NIAMS, NINDS, NICHD, NHGRI FSHD funding is
still non existent. Since 2001, the overall NIH wide muscular dystrophy
budget has increased from $21.0M to $42.2M in fiscal year 2006
estimated and enacted. Since 2001, the FSHD budget has increased from
$500,000 to $1.6M in fiscal year 2006 estimated.
NATIONAL INSTITUTES OF HEALTH (NIH) MUSCULAR DYSTROPHY AND FSHD APPROPRIATIONS HISTORY \1\
[In millions of dollars]
----------------------------------------------------------------------------------------------------------------
Total NIH NIAMS NINDS NICHD NHGRI NIH wide
Fiscal year dollars dollars dollars dollars dollars dollars
on MD on MD on MD on MD on MD on FSHD
----------------------------------------------------------------------------------------------------------------
2000.......................................... 12.6 4.8 4.9 1.2 ......... 0.4
2001.......................................... 21.0 9.2 8.2 0.5 0.3 0.5
2002.......................................... 27.6 11.1 9.8 0.6 2.3 1.3
2003.......................................... 39.1 15.5 13.2 4.5 2.1 1.5
2004.......................................... 38.7 15.0 14.8 3.8 0.3 2.2
2005ES........................................ 41.0 16.3 13.7 4.8 2.2 1.6
2005EN........................................ 42.2 15.2 16.6 5.0 0.3 1.6
2006ES........................................ 42.2 15.2 16.7 5.0 0.3 1.6
----------------------------------------------------------------------------------------------------------------
\1\ Source: NIH/OD Budget Office & NIH OCPL.
NIH NIAMS. The NIAMS is ostensibly the lead institute at the NIH on
muscular dystrophy. After all of our efforts the NIH National Institute
of Arthritis and Musculoskeletal Disorders (NIAMS) now has only one
research contract that it is co-funding with NIH NINDS for FSHD for
$186,233 per year? Not one single research grant for FSHD, the third
most prevalent dystrophy! The total muscular dystrophy portfolio ending
December 15, 2005 was 58 projects, including Wellstone Cooperative
Research Centers (CRC) components for a total of $14,992,725.
NIH NINDS. The NINDS is the second largest NIH contributor towards
muscular dystrophy research funding. The NIH National Institute of
Neurological Disorders and Stroke (NINDS) now has three research
grants, one research contract, and one-quarter of a Wellstone CRC for
FSHD for a total of $1,386,620 in fiscal year 2004. The total muscular
dystrophy fiscal year 2004 portfolio reported February 1, 2005 was 39
projects, including Wellstone CRC components for a total of
$14,756,290.
NIH NICHD. The NICHD is third largest NIH contributor towards
muscular dystrophy research funding. The NIH National Institute of
Child Health and Human Development (NICHD) does not have a single
research grant or project directly focused or covering FSHD, which is
the third most prevalent dystrophy that affects both boys and girls.
The total muscular dystrophy fiscal year 2004 portfolio reported
December 1, 2004 was 15 projects, including Wellstone CRC components
for a total of $3,837,633.
NIH NHGRI. The NHGRI is historically the fourth largest NIH
contributor towards muscular dystrophy research funding. The NIH
National Human Genome Research Institute (NHGRI) does not have a single
research grant or project directly focused or covering FSHD. The total
muscular dystrophy fiscal year 2004 portfolio reported on December 1,
2004 was 1 project (Z01-HG000215-02), including Wellstone CRC
components for a total of $281,396. The project is Hereditary Inclusion
Body Myopathy (HIBM) and HIBM is not a type of muscular dystrophy.
Astonishingly, the total NIH wide spending on muscular dystrophy
decreased from $39.1 million (fiscal year 2003) to $38.7 million
(fiscal year 2004). Something is wrong with this trend given the
Appropriations Subcommittee's interest in this area and the efforts of
the patient and research communities to shore up and improve muscular
dystrophy research.
NATIONAL INSTITUTES OF HEALTH (NIH) APPROPRIATIONS HISTORY \1\
[Dollars in millions]
----------------------------------------------------------------------------------------------------------------
NIH MD MD FSH FSHD FSHD
Fiscal year overall research percent research percent percent
dollars dollars of NIH dollars of MD of NIH
----------------------------------------------------------------------------------------------------------------
2000.......................................... $17,821 $12.6 0.071 $0.4 3.18 0.0022
2001.......................................... 20,458 21.0 0.103 0.5 2.38 0.0024
2002.......................................... 23,296 27.6 0.118 1.3 4.71 0.0056
2003.......................................... 27,067 39.1 0.144 1.5 3.83 0.0055
2004.......................................... 27,887 38.7 0.139 2.2 5.67 0.0079
2005E......................................... 28,495 41.0 0.144 1.6 3.90 0.0056
2006E......................................... 28,640 42.2 0.147 1.6 3.79 0.0056
----------------------------------------------------------------------------------------------------------------
\1\ Source: NIH/OD Budget Office & NIH OCPL.
The NIH NIAMS, NINDS, NICHD, NHGRI the four lead institutes on
muscular dystrophy reported a combined total of 113 projects on
muscular dystrophy totaling $33,869,044 in fiscal year 2004. Of that
total amount facioscapulohumeral muscular dystrophy (FSHD) received
$1,572,853 for three grants, one contract and one-quarter of a
Wellstone CRC.
Looking at the three existing Wellstone Cooperative Research
Centers (CRCs) the NIH NICHD is spending $1,631,994, the NIH NIAMS is
spending $1,224,971, and the NIH NINDS is spending $1,462,151. Only
one-quarter of the Wellstone CRC funded by the NIH NINDS specifically
works on FSHD. One more Wellstone center is currently in the process of
being funded and none of the work at the fourth Wellstone pertains to
FSHD. Of $4,319,116 funded to the first three Wellstone CRCs, only
$365,538 is directly titled for FSHD. Only 8.46 percent of the total
Wellstone expenditure is being spent on the third most prevalent form
of muscular dystrophy that affects both men and women.
Mr. Chairman, we are troubled by the NIH grant review process used
for the Wellstone Center applications as NIH uses a review process that
deviates from its rigorous adherence to stating that it funds projects
of the highest scientific merit. The Wellstone applications are
reviewed for scientific merit and then the entire score is adjusted
upward or downward based on a ``gestalt'' or an impression. The NIH
NIAMS extramural program director writes that as an ``example, one or
more of the research projects may have very high scientific merit but
lack relevance or contribute little to the Center [Wellstone] as a
whole; conversely, research projects with relatively lower scientific
merit may provide necessary strengths to the other components of the
Center, and make a major contribution to the Center as a whole.'' This
changing of the rules has not worked in the favor of FSHD research and
in fact quite the opposite in round two of the Wellstone evaluations.
We ask the committee to hold a hearing to more closely examine if
scientific quality is abrogated by a more subjective review standard.
Mr. Chairman, we are asking you to inquire about the abysmal
performance record in FSHD funding and FSHD oriented Wellstone CRCs by
the NIH. Last, at the end of the day, we all recognize that simply not
enough grants are being submitted by the extramural research community
to the NIH. Note that the NIH has done nothing to date to specifically
encourage or targeted to draw in FSHD research applications in five or
six years. For most of fiscal year 2004, there was no active program
announcement on the street in muscular dystrophy from the NIH giving
researchers no obvious avenues or handles to submit basic research
grants. Of course, researchers are not restricted from submitting
applications and can always submit grants in the absence of a call for
proposal but most look for a program announcement or call for
applications as a signal of NIH interest. The NIH is certainly not
receiving enough grants applications for FSHD, but it also manages to
reject almost every one of the scarce few being submitted by the top
FSHD researchers in the world. It can be said that the volunteer health
agencies and extramural community of researchers have done everything
in their power to grow the area of research and to promote new
researchers and research projects. We have been very successful as
shown above and need the NIH to capitalize on our success and
investments. The NIH has recognized that there is a systemic problem
and has even self-identified a significant gap as relates to FSHD, but
it has not stated what and if anything it intends to do to ameliorate
the unequal growth and opportunity for muscular dystrophies other than
Duchenne muscular dystrophy.
At the December 2004 MD CARE Act mandated Muscular Dystrophy
Coordinating Committee (MDCC) the staff and Director's of the NIH
admitted there was a problem in the gap with FSHD research. The follow-
up has been deferred to programmatic staff and the implementation
details of the pending muscular dystrophy research plan. The NIH did
not say exactly when it would follow-up on funding new research in
FSHD. The NIH has a history in FSHD of committing to address this issue
and never following through. The two prior NIH sponsored research
planning conferences on FSHD are an example. Only a minor fraction of
the 2000 NIH planning conference research plan developed by the NIH has
been implemented. At this point, we are unsure if the lack of FSHD
research in the NIH portfolio is a problem of miscommunication or
perhaps a more deliberate and calculated on the part of the NIH.
We also ask that Congress request an explanation from the program
staff and Directors of the NIH NIAMS, NHGRI, OD and NICHD for the
inability to do better in the area of FSHD despite repeated
Congressional requests. We implore Congress to request the NIH to
specifically build the research portfolio on FSHD through all available
means, including re-issuing specific calls for research on FSHD at an
accelerated rate, to make up for historical and present neglect.
Mr. Chairman, we trust your judgment on the matter before us. We
believe the Committee should explore why muscular dystrophy in general
and FSHD in particular has been left behind in the great rise in
research support at the NIH. Frankly, we are extremely frustrated that
amid a huge increase in funding and strong unambiguous expressions of
Congressional support, the NIH commitment in facioscapulohumeral
muscular dystrophy (FSHD) is so feeble. Mr. Chairman thanks to your
extraordinary efforts, consideration and work in this area I have hope
that we will find solutions and that hope keeps me going.
Mr. Chairman, again, thank you for providing this opportunity to
testify before your Subcommittee.
______
Prepared Statement of the Federation of American Societies for
Experimental Biology
INTRODUCTION TO FASEB
The Federation of American Societies for Experimental Biology
(FASEB) is a coalition of 22 scientific societies who together
represent more than 66,000 biomedical research scientists. The mission
of FASEB is to enhance the ability of biomedical and life scientists to
improve, through their research, the health, well-being and
productivity of all people.
FASEB'S RECOMMENDATION FOR NIH FUNDING IN FISCAL YEAR 2006
As your committee begins deliberations on appropriations for
agencies under its jurisdiction, FASEB would like to offer its views on
funding for the National Institutes of Health (NIH). FASEB recommends
that that the National Institutes of Health receive $30.07 billion in
fiscal year 2006, an increase of 6 percent over the level for the
previous fiscal year. This level of funding is consistent with our
analysis of what is needed to prevent the curtailment of vital research
programs.
NIH'S MISSION
The National Institutes of Health (NIH) is the single most
important source of funding that drives advances in basic biomedical
research and clinical medicine. Over the past 50 years, NIH research
has transformed the practice of medicine and made significant
improvements in the long-term health of our citizens. Even greater
benefits are possible in the next two decades, if we are positioned to
capitalize on the many profound advances in fundamental science.
Modern medical research is poised to revolutionize the prevention,
diagnosis and treatment of disease. These opportunities coincide with
urgent public health needs. The baby boom generation is graying;
without more effective strategies against chronic diseases, such as
osteoporosis, Parkinson's and Alzheimer's diseases, and heart disease,
the health care needs of this generation will place enormous economic
and social burdens on their children and our Nation. In addition, new
and emerging infectious diseases are a constant threat to our society;
without novel and improved methods for predicting, detecting,
controlling and preventing emerging and re-emerging diseases, our
nation will be ill prepared to respond to the major public health
challenges of the twenty-first century. To meet all of these challenges
with improvements in patient care depends on continuous scientific
discovery that will usher in a new age in the practice of medicine.
NOVEL MEDICAL PRACTICE MADE POSSIBLE BY NIH-FUNDED RESEARCH
The pace of advancement continues to accelerate such that there are
new treatments that substantially increase the quality and length of
life for a large number of Americans. Most of these successes were only
made possible because of basic research and committed clinical
development. Below, we have highlighted some major advances in
prevention and treatment of heart disease, infectious diseases, cancer,
vaccines, obesity and diabetes, and women's diseases. We point out how
basic research is benefiting Americans and increasing their longevity
and quality of life. At the same time, we indicate some of the many
areas of medicine that provide opportunities for important advances in
the future.
Cardiovascular Disease.--Without doubt, one of the most important
advances in human health for an aging population has been the
investigation and treatment of cardiovascular disease (CVD). Basic
research identified the limiting step in cholesterol biosynthesis, and
this led directly to the development of statins. These wonder drugs
lower levels of blood lipids, and they are remarkably effective in the
reduction of coronary events and death from coronary heart disease.
Without the basic research, drug development for the treatment of
hypercholesterol would have languished for years.
Although important progress has been made, there is need to
understand the causes of CVD, and find new means of prevention. Studies
published within the past 2 years affirm that CVD is strongly affected
by inflammation, and that the most reliable early predictors of disease
are blood proteins that reflect chronic inflammation such as C-reactive
protein. Further research into the prevention of dangerous inflammatory
responses promises to substantially reduce the major cause of death in
Americans.
Infectious Diseases.--Like HIV/AIDS, Ebola and West Nile virus,
SARS reminds us that emerging and reemerging infectious diseases are
constant threats to national and international public health. In 2003,
SARS rapidly moved across the globe, becoming a worldwide health
emergency that resulted in quarantines, travel warnings, and mounting
economic damage. The ability of NIH to marshal its resources to rapidly
initiate development of diagnostics, therapeutics and vaccines against
SARS has positioned us well in our quest for tools to detect, treat and
prevent SARS.
Cancer.--Using monoclonal antibodies (mAb), scientists have also
identified the cell surface receptors that characterize many different
cells of the body. These same mAb can be chemically engineered for use
as biologic drugs in the treatment of many different diseases. The mAb
reagent that targets a lymphocyte receptor has become a proven therapy
for non-Hodgkin's B cell lymphoma; many patients remain disease-free
for several years after having failed chemotherapy. Based on more
recent clinical trials, this same drug may also be effective in the
treatment of several forms of autoimmune disease including rheumatoid
arthritis. Many other engineered mAb are being tested in clinical
trials for use as biologic drugs, and again, more research is needed to
identify new disease targets.
The latest genetic technologies are also beginning to deliver
important tools for the treatment of cancer. Recently, NIH-supported
research has been used to develop technologies where virtually the
entire genome can be studied on a small chip (DNA microarray). A recent
example of the promise of this technology comes from the study of
chronic lymphocytic leukemia (CLL). CLL patients fall into two
categories: those whose tumors progress slowly and those with highly
malignant tumors that require aggressive therapy. Microarray analyses
identified the expression of a single gene that discriminates these
tumor types with a high degree of accuracy. This has now led to a
simple blood test to determine tumor prognosis and guide therapy.
Microarray analyses will be used in the future to analyze each
individual cancer as a way of guiding highly individualized therapies,
and this will in turn result in a new generation of highly effective
treatments.
Vaccines.--Vaccine research and development proceeds at a rapid
pace using new tools from a variety of fields. Hemophilus influenza
type b is one of the leading causes of invasive bacterial infection in
young children worldwide. The development of a vaccine for this disease
has dramatically decreased the incidence of pediatric meningitis from
approximately 20,000 to 200 cases per year in the United States. The
cost for treating this disease and its complications was $500 million
annually, whereas the cost of vaccination is presently no more than
fifty cents per patient. The development of this successful vaccine
evolved naturally out of NIH-supported research in basic immunology and
many additional breakthroughs are anticipated. For example, similar
vaccines are being tested to prevent pneumoccocal and meningococcal
infections that often result in pneumonia or meningitis.
New sequencing techniques made possible from the Human Genome
Project allow the rapid decoding of genomes of bioterrorism threats as
well as rapidly mutating pathogens. Immunologists have created a
malaria vaccine that was made possible by genome sequencing of the
malaria parasite and its mosquito host, and recent results in children
show that this vaccine can convey a 50 percent decline in infections.
The genome sequence of each pathogen facilitates the identification of
virulence factors, which in turn, constitute the best targets for
vaccination. For example, the creation of a SARS DNA microarray chip,
available from NIAID, will aid in the rapid development of vaccines
against this recently identified pathogen. The complementary nature of
basic and clinical research is no where more apparent than in the
advantage that vaccine research takes of chemical structures determined
by x-ray crystallography. The recent discovery of the 3-D structure of
the anthrax bacterium will speed development of novel antitoxins to
protect our populace against bioterrorism. Thus, work on the horizon
promises vaccines that will confer resistance to previously
uncontrollable infectious agents.
Obesity and Diabetes.--The obesity epidemic continues to rise. The
projected health care requirements arising from complications
associated with excessive weight will substantially expand the costs of
Medicare and private health insurance in an aging population. In
response to this crisis, NIH has increased funding in obesity research
and this has led to an explosion of new information concerning the
regulation of metabolism and the causes of pathogenesis. For example,
the 2004 Lasker Prize was shared by two American NIH-funded researchers
and a Frenchman for their work on nuclear receptors, and in part for
the role these receptors play in insulin resistance and metabolism of
fat cells. This work holds great promise for therapeutic intervention
since nuclear receptors are easily targeted by modified versions of
steroid hormones. Remarkably, some of the most incisive work has come
from basic studies using model organisms, such as worms and flies,
where genetic screens have identified the essential metabolic pathways.
Over the period of the NIH budget doubling, researchers have
discovered previously unknown hormones such as Resistin and Gherlin.
Resistin is a fat-cell derived hormone that, in excess, causes problems
with carbohydrate metabolism, and this is turn can result in diabetes.
Gherlin, along with Leptin, has been found to be important in the
modulation of appetite. In another area of metabolic research, we now
understand the molecular basis for trans fatty acid and saturated fatty
acid effects on LDL cholesterol, and this has important implications
both in weight control and in cardiovascular disease.
Health care costs more than twice as much for diabetes patients as
for all other individuals. Eliminating or reducing the health problems
caused by diabetes could significantly improve the quality of life for
people with diabetes and their families while at the same time
potentially reducing national expenditures for health care services and
increasing productivity in the U.S. economy. These costs will increase
dramatically if the epidemic is allowed to worsen. Indeed, it was
recently predicted by the Centers for Disease Control that one out of
three children born in the United States in the year 2000 will develop
diabetes in his or her lifetime.
Obesity affected 44 million Americans as of 2001, an increase of 74
percent from 1991. Obesity is a major risk factor for diabetes and is
also associated with cardiovascular disease and cancer. The total cost
attributable to obesity amounted to $99.2 billion in 1995.
Approximately $51.7 billion of those dollars were direct medical costs.
The number of restricted-activity days, bed-days, and work-lost days
increased substantially between 1988 and 1994, while the number of
physician visits attributed to obesity increased 88 percent during the
same period.\1\ The health-related economic cost of obesity to U.S.
business is substantial, representing approximately 5 percent of total
medical care costs.\2\
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\1\ Obesity Research 1998; 6 (2): 97-106.
\2\ American Journal of Health Promotion 1998; 13 (2): 120-127.
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Women's Health.--Recent work has demonstrated that estrogen and
related compounds reduce brain damage from stroke in experimental
animals. With these new findings it is extremely important that support
for existing and new research to resolve the controversy of safety and
risks of hormone replacement therapy be continued and increased. Such a
resolution will have a wide impact on women's health concerns such as
osteoporosis, stroke, Alzheimer's disease and memory loss.
COMPETITIVE PEER REVIEW
Part of the success of American science derives directly from the
system for awarding research grants. The majority of NIH funding comes
in response to investigator-initiated research proposals that are
evaluated by a committee of experts in each scientific field. Elaborate
care is taken to ensure that conflicts of interest are minimized and
each research proposal is evaluated on its merit. Over many years this
competitive system has promoted the highest quality research, and it is
a shining example of a program based on ``reward for excellence.'' No
scientist can afford to rest on his or her previous accomplishments. As
opposed to the entitlement system of funding found in some other
countries, the American system rewards productivity, innovation, and
impact. While FASEB welcomes new ideas to make the system function even
more efficiently, we support the basic concept of peer review as
practiced by NIH.
THE IMPORTANCE OF CONTINUING THE MOMENTUM
There has never been greater opportunity for advancing biomedical
science and generating more effective practices for clinical medicine.
Within our reach are dramatic new breakthroughs that can lessen the
economic and human costs of disease.
In response to the massive amounts of new information being
generated in every field of biomedical science, the NIH has recently
developed a framework of priorities that NIH as a whole must address in
order to optimize its entire research portfolio. The NIH Roadmap \3\
identifies the most compelling opportunities in three main areas and
will (1) promote a quantitative understanding of the many
interconnected networks of molecules that comprise our cells and
tissues, their interactions, and their regulation; (2) explore new
organizational models for team science; and (3) foster large-scale
epidemiological studies and clinical trials to enhance the state of
medical treatment and move new therapies into practice. Specialized
core facilities and consortia are being promoted to bring together
scientists from different disciplines as a way of accelerating
discovery. FASEB supports the goals and vision of this initiative,
although we maintain that most novel discovery and innovative research
will continue to originate from individual investigators. In order to
maintain our rate of discovery and build the infrastructure outlined in
the Roadmap, NIH requires adequate support for agency-initiated and
investigator-initiated projects.
---------------------------------------------------------------------------
\3\ http://nihroadmap.nih.gov/.
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The momentum generated from doubling the NIH budget has energized
biomedical science at every level. We see new young investigators
making some of the most important discoveries. Training initiatives
have encouraged talented students to choose a career in academic
medicine. These highly talented and motivated individuals spend 10
years or more after college in graduate school and postdoctoral
appointments. In 2003, only 16.6 percent of new investigators obtained
funding within their first 3 years of applying for these critical
grants, thereby making it very difficult for these young scientists to
establish their new innovative research programs.
It is impossible to predict which cures and therapies might be lost
if funds for medical research are curtailed, but it is certain that
inconsistent NIH funding sends a chilling message to young scientists
in training and those just entering the research field. Scientific
competition will always be intense, but exceptionally talented young
scientists must be assured that sufficient research funding will be
available or they will be forced to pursue alternative careers.
RECOMMENDATION
FASEB understands that the fiscal year 2006 budget for
discretionary spending is projected to be constrained in light of the
large deficit, the expenditures for defense and homeland security and
the growth in entitlement obligations. However, FASEB strongly believes
that the scientific opportunities for progress in medical research have
never been greater. Therefore, FASEB recommends that the National
Institutes of Health receive $30.07 billion in fiscal year 2006, an
increase of 6 percent over the level for the previous fiscal year.
______
Prepared Statement of the Friends of the National Institute of
Environmental Health Sciences (NIEHS)
The Friends of the National Institute of Environmental Health
Sciences (NIEHS) group appreciates the opportunity to comment on the
fiscal year 2006 appropriation for the institute. The Friends of NIEHS
is a coalition committed to expanding the National Institutes of
Health's (NIH) environmental health research portfolio through
increased appropriations for NIEHS. Comprised of over 50 patient,
healthcare provider, children's health, and industry groups, the
Friends of NIEHS represents an enormously broad constituency dedicated
to improving the nation's knowledge about our health and our
environment.
Over the last several years Congress has shown a strong commitment
to health research sponsored by NIH. This financial commitment has
allowed the nation to dedicate resources to emerging scientific
opportunities that will lead to beneficial health outcomes for
Americans. We thank Congress for fulfilling its commitment to double
the NIH overall budget. However, we remain concerned about how we will
fund these opportunities in the upcoming years.
This dilemma is particularly true for the NIEHS. This institute
plays a critical role in what we know about the relationship between
our environmental exposures and disease onset. Through the research
sponsored by this Institute, we know that Parkinson's disease, breast
cancer, birth defects, miscarriage, delayed or diminished cognitive
function, infertility, asthma and many other diseases and ailments have
confirmed environmental triggers. Specifically, NIEHS has played an
important role in discovering the mechanisms by which DES
(diethylstilbestrol) causes damage, through its historical and ongoing
work on DES in the animal model. Continuing research of these
mechanisms is vital to help determine future health events related to
DES, such as the possibility of third generation effects in the
grandchildren of women who took DES during pregnancy. Our expanded
knowledge, as a result, allows both policy makers and the general
public to make important decisions about how to reduce toxin exposure
and reduce the risk of disease and other negative health outcomes.
As the nation continues to steel itself from terrorist threats, the
Friends of NIEHS applauds Congress's commitment to bolstering research
funding in the area of infectious disease as a part of national anti-
bioterrorism effort. The coalition, however, feels that an effort that
only targets bioterrorism falls short of truly protecting the nation as
it leaves the public vulnerable to chemical terrorism. Funding is
critical for future initiatives such as research concerning the
possible health effects of exposure to low levels of hazardous
chemicals and the use of an Environmental Medical Unit (EMU), as
previously supported by Congress and underway in Japan, to examine
populations affected by toxicant-induced intolerances to determine the
biomarkers and mechanisms by which to identify individual
susceptibility so as to avoid placing such individuals in hazardous
situations.
In an effort to continue the expansion of this knowledge base, the
Friends of NIEHS supports a $35 million increase in funding for NIEHS
over fiscal year 2005 levels, bringing the total appropriation for
fiscal year 2006 to $680 million. This additional funding will allow
the Institute to continue current projects and pursue promising
research in the areas of individual susceptibilities (due to gender,
age, racial/ethnic backgrounds, etc.), environmental disease triggers
and technologies (such as toxicogenomics and mouse genomics).
While there are many competing interests that must be considered in
the fiscal year 2006 budget, a top priority for Americans is medical
research that explores the relationship between disease and the
environment. The members of the Friends of NIEHS respectfully request a
total of $680 million for fiscal year 2006 for the National Institute
of Environmental Health Sciences. Thank you for this opportunity to
discuss the importance of these programs as the Congress configures the
Labor-HHS fiscal year 2006 budget.
The Friends of NIEHS respectfully requests Congress to appropriate
a total of $680 million for fiscal year 2006.
______
Prepared Statement of the Friends of the National Institute on Drug
Abuse Coalition
Mr. Chairman and Members of the Subcommittee: The Friends of the
National Institute on Drug Abuse (FoN) a burgeoning coalition of over
50 organizations, is pleased to provide testimony to support the
extraordinary work of the NIDA. Although a new coalition, it is
comprised of organizations representing scientists, health
professionals, and advocates for preventing and treating substance use
disorders as well as understanding the causes and public health
consequences of addiction. Pursuant to clause 2(g)4 of House Rule XI,
the Coalition does not receive any federal funds.
Drug abuse and addiction represent a major health crisis in
America, and create an economic burden of over $484 billion per year.
One way we can and should continue to address this problem is through
scientific research. Because of the critical importance of drug abuse
research for the health and economy of our nation, we write to you
today to request your support for a 6 percent increase for NIDA in the
Fiscal 2006 Labor, Health and Human Services, Education and Related
Agencies Appropriations bill. That would bring total funding for NIDA
in Fiscal 2006 to $1,067,040,300. Recognizing that so many health
research issues are inter-related, we also support a 6 percent increase
for the National Institutes of Health overall, which would bring its
total to $30 billion for Fiscal 2006.
NIDA is the world's largest supporter of research on the health
aspects of drug abuse and addiction. The Institute supports a
comprehensive research portfolio that has led to our current
understanding of addiction as a preventable developmental disorder and
a chronic relapsing disease associated with long-lasting changes in the
brain and the body that can affect all aspects of a person's life.
NIDA's research portfolio is broad and deep, and spans the continuum of
basic neuroscience, behavior and genetics research through applied
health services research and epidemiology. This work deserves
continuing, strong support from the Congress. Some examples include:
New research supported by NIDA and others reveals that drug
addiction is a ``developmental disease.'' That is, it often starts
during the early developmental stages in adolescence and sometimes as
early as childhood. This is a time when the brain undergoes major
changes in both structure and function. We now know that the brain
continues to develop throughout childhood and into early adulthood.
Exposure to drugs of abuse at an early age may increase a child's
vulnerability to the effects of drugs and may impact brain development.
As a result, NIDA has increased its emphasis on adolescent brain
development to better understand how developmental processes and
outcomes are affected by drug exposure, the environment and genetics.
Recent advances in genetic research have enabled researchers to start
to investigate which genes make a person more vulnerable, which genes
protect a person against addiction, and how genes and environment
interact. As part of the prevention portfolio NIDA is also involving
pediatricians and other primary care providers to develop tools, skills
and knowledge to be able to screen and treat patients as early as
possible, including patients with mental disorders who may be at a high
risk to develop addiction. We know that if we do not intervene early,
drug problems can last a lifetime, making prevention a high research
priority.
Treatment research is another priority area for NIDA. Significant
effort is underway to develop, test, and ensure the delivery of
evidence-based interventions to all practitioners and patients across
the country. Building on advances from the Institute's basic
neuroscience and behavioral research program NIDA has introduced a
number of effective medications and behavioral treatments. The
Institute also continues to look for more innovative, efficacious, and
cost-effective ways to treat patients for a variety of addictions,
including addiction to nicotine. NIDA is also using the National Drug
Abuse Treatment Clinical Trials Network (CTN) to help respond to
emerging public health needs like prescription drug abuse and the
increases in patients who are seeking treatment for both substance
abuse and mental disorders.
Another priority area for NIDA is curtailing the spread of HIV/
AIDS. Because illicit drug use can impact decision-making and increase
the likelihood that an individual will engage in risk-taking behaviors,
treatment for drug abuse is, itself, HIV prevention. Drug abuse
treatment can reduce activities related to drug use that increase the
risk of getting or transmitting HIV. NIDA is especially interested in
reducing HIV/AIDS rates in racial and ethnic minority populations,
which are disproportionately affected by this disease.
Recognizing substance abuse as a disorder that can affect the
course of other diseases, including HIV/AIDS, mental illness, trauma,
cancer, cardiovascular disease and even obesity is critical to
improving the health of our citizens. NIDA has launched several efforts
to reach out to numerous professions within the healthcare community to
address these issues.
ADDITIONAL SUCCESS STORIES, CHALLENGES AND OPPORTUNITIES
Adolescent Brain Development--How Understanding the Brain Can
Impact Prevention Efforts.--NIDA maintains a vigorous developmental
research portfolio focused on adolescent populations. NIDA working
collaboratively with other NIH Institutes has shown that the human
brain does not fully develop until about age 25. This adds to the
rationale for referring to addiction as a ``developmental disease;'' it
often starts during the early developmental stages in adolescence and
sometimes as early as childhood, a time when we know the brain is still
developing. Having insight into how the human brain works, and
understanding the biological underpinnings of risk taking among young
people will help in developing more effective prevention programs. FoN
believes NIDA should continue its emphasis on studying adolescent brain
development to better understand how developmental processes and
outcomes are affected by drug exposure, the environment and genetics.
Medications Development.--NIDA has demonstrated leadership in the
field of medications development by partnering with private industry to
develop anti-addiction medications resulting in a new medication,
buprenorphine, for opiate addiction. FoN recommends that NIDA continue
its work with the private sector to develop much needed anti-addiction
medications, for cocaine, methamphetamine, and marijuana dependence.
Co-Occurring Disorders.--NIDA recognizes substance abuse rarely
occurs in isolation. And to adequately address co-occurring substance
abuse and mental health problems, NIDA has developed robust
collaborations with other agencies (such as NIAAA, NIMH and SAMHSA) to
stimulate new research to develop effective strategies and to ensure
the timely adoption and implementation of evidence-based practices for
the prevention and treatment of co-occurring disorders. Through these
initiatives, NIDA is supporting research to determine the most
effective models of clinically appropriate treatment and how to bring
them to communities with limited resources. FoN recognizes the
imperative for continued funding of essential research into the nature
of and improved treatment for these complex disorders and endorses
these efforts.
Drug Abuse and HIV/AIDS.--One of the most significant causes of HIV
virus acquisition and transmission involves drug taking practices and
related risk factors in different populations (e.g. criminal justice,
pregnant women, minorities, and youth). Drug abuse prevention and
treatment interventions have been shown to be effective in reducing HIV
risk. Therefore, FoN trusts that NIDA will continue its support of
research that is focused on the development and testing of drug-abuse
related interventions designed to reduce the spread of HIV/AIDS in
these populations.
Emerging Drug Problems.--NIDA recognizes that drug use patterns are
constantly changing and expends considerable effort to monitor drug use
trends and to rapidly inform the public of emerging drug problems. FoN
believes NIDA should continue supporting research that provides
reliable data on emerging drug trends, particularly among youth and in
major cities across the country and will continue its leadership role
in alerting communities to new trends and creating awareness about
these drugs.
Reducing Prescription Drug Abuse.--NIDA research has documented
recent increases in the numbers of adults and young people who are
using prescription drugs for non-medical purposes. Reducing
prescription drug abuse, particularly among our Nation's youth will
continue to be a priority for NIDA. FoN endorses NIDA's programmatic
research designed to further the development of medications that are
less likely to have abuse/addiction liability, and to develop
prevention and treatment interventions for adolescents and adults who
are abusing prescription drugs.
Reducing Methamphetamine Abuse.--NIDA continues to recognize the
epidemic abuse of methamphetamine across the United States.
Methamphetamine abuse not only affects the users, but also the
communities in which they live, especially due to the dangers
associated with its production. FoN believes NIDA should continue to
support research to address the medical consequences of methamphetamine
abuse. Topics of particular concern include: understanding the effects
of prenatal exposure to methamphetamine and developing
pharmacotherapies and behavioral therapies to treat methamphetamine
addiction.
Reducing Inhalant Abuse.--For the second year in a row, NIDA's
Monitoring the Future Survey (MTF) has shown an increase in the use of
inhalants by 8th graders. Inhalants pose a particularly significant
problem since they are readily accessible, legal, and inexpensive. They
also tend to be abused by younger teens and can be highly toxic and
even lethal. FoN applauds NIDA's inhalant research portfolio and
believes NIDA should continue its support of research on prevention and
treatment of inhalant abuse, and to enhance public awareness on this
issue as it did recently with the release of a Community Drug Alert
Bulletin: Inhalants, as well as its new dedicated web site,
www.inhalants.drugabuse.gov.
General Medical Consequences of Drug Abuse.--NIDA recognizes that
addiction is a disorder that affects the course of other diseases such
as cancer, cardiovascular and infectious diseases. Therefore, FoN
believes that NIDA should continue to support research on the medical
consequences associated with drug abuse and addiction.
Long-Term Consequences of Marijuana Use.--NIDA research shows that
marijuana can be detrimental to educational attainment, work
performance, and cognitive function. However, more information is
needed in order to assess the full impact of long-term marijuana use.
Therefore, FoN recommends that NIDA continue to support efforts to
assess the long-term consequences of marijuana use on cognitive
abilities, achievement, and mental and physical health, as well as work
with the private sector to develop medications focusing on marijuana
addiction.
Translating Research Into Practice.--NIDA has been a leader working
with State substance abuse authorities to reduce the current 15- to 20-
year lag between the discovery of an effective treatment intervention
and its availability at the community level. In particular, NIDA worked
with SAMHSA on a recent RFA designed to strengthen State agencies'
capacity to support and engage in research that will foster statewide
adoption of meritorious science-based policies and practices. FoN
believes that NIDA should continue collaborative work with States to
ensure that research findings are relevant and adaptable by State
Substance Abuse systems. NIDA is also to be congratulated for its broad
and varied information dissemination programs as part of an effort to
ensure drug abuse research is used in everyday practice. The Institute
is focused on stimulating and supporting innovative research to
determine the components necessary for adopting, adapting, delivering,
and maintaining effective research-supported policies, programs, and
practices. As evidence-based strategies are developed, FoN urges NIDA
to support research to determine how these practices can be best
implemented at the community level.
Primary Care Settings and Youth.--NIDA recognizes that primary care
settings, such as offices of pediatricians and general practitioners,
are potential key points of access to prevent and treat problem drug
use among young people; yet primary care and drug abuse services are
commonly delivered through separate systems. FoN encourages NIDA to
continue to support health services research on effective ways to
educate primary care providers about drug abuse; develop brief
behavioral interventions for preventing and treating drug use and
related health problems, particularly among adolescents; and develop
methods to integrate drug abuse screening, assessment, prevention and
treatment into primary health care settings.
Utilizing Knowledge of Genetics and New Technological Advances to
Curtail Addiction.--NIDA recognizes that not everyone who takes drugs
becomes addicted and that this is an important phenomenon worthy of
further exploration. Research has shown that genetics plays a critical
role in addiction, and that the interplay between genetics and
environment is crucial. The science of genetics is at a crucial phase--
technological advances are providing the tools to make significant
breakthroughs in disease research. For example, FoN believes NIDA
should take advantage of new high-resolution genetic technologies which
may help to develop new tailored treatments for smoking.
Combating Nicotine Addiction.--NIDA understands that the use of
tobacco products remains one of the Nation's deadliest addictions and
Fon supports NIDA's continuing efforts to address this major public
health problem through its comprehensive research portfolio.
Reducing Health Disparities.--NIDA research demonstrates that the
consequences of drug abuse disproportionately impacts minorities,
especially African American populations. FON was pleased to learn that
NIDA formed a Subgroup of its Advisory Council to address this
important topic and applauds NIDA for working to strategically reduce
the disproportionate burden of HIV/AIDS among the African American
population. FoN believes that researchers should be encouraged to
conduct more studies in this population and to target their studies in
geographic areas where HIV/AIDS is high and or growing among African
Americans, including in criminal justice settings.
The Clinical Trials Network--Using Infrastructure to Improve
Health.--NIDA's National Drug Abuse Treatment Clinical Trials Network
(CTN), which was established in 1999 and has grown to include over 17
research centers or nodes spread across the country. The CTN provides
an infrastructure to test the effectiveness of new and improved
interventions in real-life community settings with diverse populations,
enabling an expansion of treatment options for providers and patients.
FoN suggests NIDA continue to develop ways to use the CTN as a vehicle
to address emerging public health needs.
Neuroscience Blueprint and Training.--NIDA is one of the 15
Institutes and Centers involved in the NIH Blueprint activities and FoN
recommends that NIDA continue to demonstrate leadership to foster
additional training in cross-cutting scientific issues.
Neuroimaging and the Developing Brain.--NIDA has also demonstrated
leadership in the development and application of neuroimaging
technologies to gain a greater understanding of the circuitry of the
human brain underlying drug addiction. FoN encourages NIDA to utilize
neuroimaging technology to improve its understanding of how the brain
of children and adolescents develop.
Behavioral Science.--NIDA has long demonstrated a strong commitment
to supporting behavioral science research. FoN encourages NIDA to
continue to determine the interplay of behavioral, biological, and
social factors that affect development and the onset of diseases like
drug addiction to understand common pathways that may underlie other
compulsive behaviors such as gambling and eating disorders.
Drug Treatment in Criminal Justice Settings.--NIDA is very
concerned about the well-known connections between drug use and crime.
Research continues to demonstrate that providing treatment to
individuals involved in the criminal justice system decreases future
drug use and criminal behavior, while improving social functioning.
Blending the functions of criminal justice supervision and drug abuse
treatment and support services create an opportunity to have an optimal
impact on behavior by addressing public health concerns while
maintaining public safety. FoN strongly supports NIDA's efforts in this
area, particularly the Criminal Justice Drug Abuse Treatment Studies
(CJ-DATS), a multi-site set of research studies designed to improve
outcomes for offenders with substance use disorders by improving the
integration of drug abuse treatment with other public health and public
safety systems.
CONCLUSION
It is true that many challenges remain. However, only the resources
available for carrying out its vital mission limit the potential
contributions of NIDA-funded research to the lives of countless
individuals. This is why the Friends of NIDA ask you to provide an
appropriation of $1,067,040,300 billion to the Institute so that our
nation and the world will continue to benefit from NIDA's commitment to
improving health and scientific advancement.
We understand that the fiscal year 2006 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, deserve to be
prioritized accordingly. We look forward to working with you to make
this a reality.
Thank you, Mr. Chairman, and the Subcommittee, for your support for
the National Institute on Drug Abuse.
______
Prepared Statement of the Heart Rhythm Society
The Heart Rhythm Society (HRS) thanks you and the Subcommittee on
Labor, Health and Human Services and Education for your past and
continued support of the National Institute of Health, and specifically
the National Heart, Lung and Blood Institute (NHLBI). The Heart Rhythm
Society is the international leader in science, education and advocacy
for cardiac arrhythmia professionals and patients, and the primary
information resource on heart rhythm disorders. Its mission is to
improve the care of patients by promoting research, education and
optimal health care policies and standards. Founded in 1979 to address
the scarcity of information about the diagnosis and treatment of
cardiac arrhythmias, the Heart Rhythm Society is the preeminent
professional group representing more than 3,700 specialists in cardiac
pacing and electrophysiology in 64 countries.
The Heart Rhythm Society recommends the Subcommittee continue its
commitment to supporting biomedical research in the United States and
recommends Congress provide NIH with a 6 percent increase for fiscal
year 2006. This translates into an appropriation of $30 billion for
NIH, with $3.1 billion designated to the National Heart, Lung, and
Blood Institute (NHLBI). This increase will enable the NIH and NHLBI to
sustain the level of research that leads to research breakthroughs and
improved health outcomes.
In particular, the Heart Rhythm Society recommends Congress support
research into abnormal rhythms of the heart, known as cardiac
arrhythmias. HRS appreciates the actions of Congress to double the
budget of the NIH in recent years. The doubling of the NIH budget has
served to promote a series of innovations that have improved treatments
and cures for a variety of medical problems facing our nation.
RESEARCH ACCOMPLISHMENTS
In our field for example, this research has provided critically
important insights into the genetic basis of sudden death syndrome,
which takes the lives of infants, children and young adults born with
inherited defects in the ion channels or contractile proteins of the
heart. SIDS (Sudden Infant Death Syndrome) remains the leading cause of
death for infants one month to one year of age, continuing to claim the
lives of approximately 2,500 babies each year.\1\ Our research has led
to the recognition that sudden infant death syndrome is due, in part,
to abnormal rhythms of the heart. This research is offering these
babies a chance at a normal life span.
---------------------------------------------------------------------------
\1\ First Candle/SIDS Alliance, Facts on SIDS, 2005 http://
www.sidsalliance.org/FC-PDF4/Expectant%20Parents/facts%20on%20sids.pdf.
---------------------------------------------------------------------------
Major advances have also been realized in our ability to treat
atrial fibrillation and to prevent the complications of stroke. Atrial
fibrillation is found in about 2.2 million Americans and is an
independent risk factor for stroke, increasing the risk about 5-fold.
About 15-20 percent of strokes occur in people with atrial
fibrillation. Stroke is a leading cause of serious, long-term
disability in the United States and people who have strokes caused by
AF have been reported as 2-3 times more likely to be bedridden compared
to those who have strokes from other causes. Each year about 700,000
people experience a new or recurrent stroke and in 2002 stroke
accounted for more than 1 of every 15 deaths in the United States.\2\
---------------------------------------------------------------------------
\2\ American Stroke Association and American Heart Association,
Heart Disease and Stroke Statistics--2005 Update, 2005 http://
www.americanheart.org/downloadable/heart/
1105390918119HDSStats2005Update.pdf.
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Ablation therapy has provided a cure for individuals whose rapid
heart rates had previously incapacitated them, giving them a new lease
on life. Important advances have been made in identifying patients with
heart failure and those who had suffered a heart attack and are at risk
for sudden death. The development and implantation of sophisticated
internal cardioverter defibrillators (ICD) in such patients has saved
the lives of hundreds of thousands and provided peace of mind for
families everywhere, including that of Vice-President Cheney. A new
generation of pacemakers and ICDs is restoring the beat of the heart as
we grow older, permitting us to lead more normal lives. Many of these
advances are due to the research sponsored by the NHLBI.
BUDGET JUSTIFICATION
These impressive strides notwithstanding, cardiac arrhythmias
continue to plague our society and take the lives of loved ones at all
ages, nearly one every minute of every day. Sudden Cardiac Arrest is a
leading cause of death in the United States, claiming an estimated
325,000 lives every year, or one life every two minutes.\3\ The burden
of morbidity and mortality due to cardiac arrhythmias is predicted to
grow dramatically as the baby boomers age. Atrial fibrillation strikes
3-5 percent of people over the age of 65,\4\ presenting a skyrocketing
economic burden to our society in the form of healthcare treatment and
delivery. As previously mentioned one in seven of all strokes are due
to atrial fibrillation. It is estimated in 2005 that the direct and
indirect cost of stroke will be $56.8 billion.\5\ Cardiac diseases of
all forms increase with advancing age, ultimately leading to the
development of arrhythmias.
---------------------------------------------------------------------------
\3\ Heart Rhythm Foundation, The Facts on Sudden Cardiac Arrest,
2004 http://www.heartrhythmfoundation.org/its_about_time/pdf/
provider_fact_sheet.pdf.
\4\ Heart Rhythm Society, Atrial Fibrillation & Flutter, 2005
http://www.hrspatients.org/patients/heart_disorders/
atrial_fibrillation/default.asp.
\5\ American Stroke Association, Impact of Stroke, 2005 http://
www.strokeassociation.org/presenter.jhtml?identifier=1033.
---------------------------------------------------------------------------
The above progress we have witnessed in recent years is gradually
eroding as the resources available to the academic scientific and
medical community are diminished. The budgets appropriated by Congress
to the NIH in the past two years averaged 2.8 percent and were far
below the level of scientific inflation. These vacillations in funding
cycles threaten the continuity of the research and the momentum that
has been gained over the years.
It is for this reason that we are asking for your support to
increase NIH appropriations by 6 percent for a fiscal year 2006 budget
of $30 billion for NIH and $3.1 billion for NHLBI. The Heart Rhythm
Society recommends Congress specifically acknowledge the need for
cardiac arrhythmia research to prevent sudden cardiac arrest and other
life threatening conditions such as sudden infant death syndrome,
definitive therapeutic approaches for atrial fibrillation and the
prevention of stroke, and other genetic arrhythmia conditions.
Thank you very much for your consideration of our request. If you
have any questions or need additional information, please contact Amy
Melnick, Vice-President, Health Policy at the Heart Rhythm Society
([email protected] or 202-464-3434). Thank you again for the
opportunity to submit testimony.
______
Prepared Statement of the Hemophilia Federation of America
SUMMARY OF FISCAL YEAR 2006 RECOMMENDATIONS
--Continued support for the completion of Ricky Ray Hemophilia Relief
Fund ``half-cases''.
--An additional $10 million for Hemophilia Treatment Centers through
the Maternal Child Health Bureau at the Health Resources and
Services Administration.
--Continued support for the Centers for Disease Control and
Prevention's hemophilia grant program, including expansion of
the program to additional patient-based organizations within
the hemophilia community.
--A 6 percent increase overall for the National Institutes of Health,
including a 6 percent increase for the National Heart, Lung,
and Blood Institute, and the National Institute for Allergy and
Infectious Diseases.
INTRODUCTION
The Hemophilia Federation of America (HFA) is a national voluntary
health organization that both assists and advocates for the blood
clotting disorders community. The Federation was founded in 1994 and
exists for the purpose of serving its constituents as an advocate for
blood safety, best practices treatment for hemophilia, issues involving
health insurance, and enhancing the quality of life for those who
suffer with hemophilia and other blood clotting disorders. Our mission
is to serve the needs of all families with coagulation disorders and
mitigate the complications of treatment. Our vision at the Hemophilia
Federation of America is that the blood clotting disorders community
has removed all barriers to both choice of treatment and quality of
life.
The Hemophilia Federation of America provides a multitude of
programs and services to the bleeding disorder community. These
programs include the Emergency Room Triage Program, which educates
emergency room physicians and support staff to the sensitivities of
patients with hemophilia need in an ER medical setting. The Moms on a
Mission and Dads in Action programs work to intimately educate parents
of those with hemophilia to be active in the care of their child and
understand the care that the disorder needs to lead a healthy,
productive life. The Helping Hands Project assists struggling families
of hemophilia patients with resources to meet their medical and living
expenses, because of the high costs of hemophilia treatment. HFA is
proud of the services our organization provides to the hemophilia
community and encourages the community to take advantage of them.
RICKY RAY HEMOPHILIA RELIEF FUND
Mr. Chairman, we are extremely grateful for your leadership last
year in supporting efforts to finalize pending ``half-cases'' within
the Ricky Ray Hemophilia Relief Fund.
The closing of the Ricky Ray fund in November of 2003 marked the
completion of the 5-year period that the federal government designated
to provide compassionate payments to those in the hemophilia community
who were infected with HIV/AIDS due to contaminated anti-hemophilia
factor concentrates in the 1980s.
In the closing days of the Fund, the program administrator
contacted HFA to ask for our assistance in the completion of many
unfinished cases. He brought to our attention 43 cases where the
entitled family only received half of the compassionate payment, due to
a parent's absence from a patient's life. The Ricky Ray Fund
administrator asked the Federation to assist him in the adjudication of
those cases that qualified for additional support. HFA would like to
thank the subcommittee for its assistance in working with the community
to provide the remaining payments and encourage you to continue this
support until this process is completed.
HEMOPHILIA TREATMENT CENTERS/HEALTH RESOURCES AND SERVICES
ADMINISTRATION
In 1974, Congress created a network of Hemophilia Treatment Centers
(HTCs) throughout the United States. This treatment centers remain
essential to ensuring that comprehensive and specialized care is
available for persons with bleeding disorders. There are currently over
130 HTCs in the United States. These centers abide by federal
guidelines for the delivery of comprehensive hemophilia services as
developed by the Maternal Child Health Bureau and the Centers for
Disease Control and Prevention.
Hemophilia Treatment Centers provide family centered, state of the
art medical and psychosocial services, as well as education and
research to persons with inherited bleeding disorders. The bleeding
disorder community utilizes many services through the Hemophilia
Treatment Centers. These services include diagnostic evaluations for
hemophilia, von Willebrand disease and other bleeding disorders. They
also include annual comprehensive evaluations, clinical trials on new
blood clotting therapies, coordination with the individual's primary
care physician, emergency consultations, hematological management for
surgeries, dental procedures and childbirth. Hemophilia Treatment
Centers educate patients and family members on infusion training,
encourage collaboration with HTC clinicians throughout the United
States, participate in CDC research, and collaboration with the
hemophilia voluntary health community.
For fiscal year 2006 HFA encourages the subcommittee to increase
funding for HTC's at the Maternal and Child Health Bureau by $10
million.
HEMOPHILIA GRANT PROGRAM AT THE CENTERS FOR DISEASE CONTROL AND
PREVENTION
Mr. Chairman, HFA strongly supports the expansion of the Centers
for Disease Control and Prevention's hemophilia grant program. This
important initiative provides support for education and awareness
activities regarding hemophilia, as well as disease management, blood
safety, and surviellance projects.
Given the important contributions that all voluntary organizations
in the hemophilia community make to patients and families, we are
recommending that steps be taken to ensure that additional
organizations can participate in the hemophilia program on an annual
basis. Based on the current structure of the grant program, only one
organization is able to receive funds to support patients. In order to
maximize the effectiveness of this important initiative, we believe
that additional organizations should be empowered to participate in the
CDC program on an annual basis. We encourage the subcommittee to
support our efforts in this area in fiscal year 2006 bill.
NATIONAL INSTITUTES OF HEALTH
HFA applauds the National Heart, Lung and Blood Institute and the
National Institute of Allergy and Infectious Diseases for their support
of hemophilia research. In addition, we are grateful to the
subcommittee for recognizing the growing problem of women and bleeding
disorders, which if left untreated, can lead to such dangerous medical
conditions as anemia, unnecessary hysterectomies, and complications
during menstruation.
Patients and families in the hemophilia community are placing their
hopes for a better quality of life on treatment advances made through
biomedical research. For fiscal year 2006, we encourage the
subcommittee to provide a 6 percent increase overall for NIH, and a 6
percent increase for NHBLI and NIAID.
Mr. Chairman, thank you for the opportunity to present the views of
the Hemophilia Federation of America. If you have any questions, please
do not hesitate to contact HFA's Washington Representative, Dale Dirks
at (202) 544-7499.
______
Prepared Statement of the Hepatitis Foundation International
SUMMARY OF FISCAL YEAR 2006 RECOMMENDATIONS
--Continue the great strides in research and prevention at the
National Institutes of Health (NIH) by providing a 6 percent
budget increase for fiscal year 2006. Increase funding for the
National Institute for Allergy and Infectious Diseases (NIAID),
the National Institute of Diabetes and Digestive and Kidney
Diseases (NIDDK), the National Institute on Alcohol Abuse and
Alcoholism (NIAAA), and the National Institute on Drug Abuse
(NIDA) by 6 percent.
--$41 million in fiscal year 2006 for a hepatitis B vaccination
program for high risk adults at CDC as recommended by the
National Hepatitis C Prevention Strategy.
--$40 million in fiscal year 2006 for CDC's Prevention Research
Centers.
--Continued support of the National Viral Hepatitis Roundtable.
Mr. Chairman and members of the subcommittee thank you for your
continued leadership in promoting better research, prevention, and
control of diseases affecting the health of our nation. I am Thelma
King Thiel, Chairman and Chief Executive Officer of the Hepatitis
Foundation International (HFI), representing members of 425 patient
support groups across the nation, the majority of whom suffer from
chronic viral hepatitis.
Currently, five types of viral hepatitis have been identified,
ranging from type A to type E. All of these viruses cause acute, or
short-term, viral hepatitis. Hepatitis B, C, and D viruses can also
cause chronic hepatitis, in which the infection is prolonged, sometimes
lifelong. While treatment options are available for all types of
hepatitis, individuals with chronic viral hepatitis (types B, C, and D)
represent the majority of liver failure and transplant patients.
Treatment options and immunizations are available for most types of
hepatitis (see below). However, all types of viral hepatitis are
preventable.
HEPATITIS A
The hepatitis A virus (HAV) is contracted through fecal/oral
contact (i.e. fecal contamination of food, or diaper changing tables if
not cleaned properly), and sexual contact. In addition, eating raw or
partially cooked shellfish contaminated with HAV can spread the virus.
Children with HAV usually have no symptoms; however, adults may become
quite ill suddenly experiencing jaundice, fatigue, nausea, vomiting,
abdominal pain, dark urine/light stool, and fever. There is no
treatment for HAV; however, recovery occurs over a 3 to 6 month period.
About 1 in 1,000 with HAV suffer from a sudden and severe infection
that may require a liver transplant. Luckily, a highly effective
vaccine can prevent HAV. This vaccination is recommended for
individuals who have chronic liver disease (i.e. HCV or HBV) or
clotting factor disorders, in addition to those who travel or work in
developing countries.
HEPATITIS B
Hepatitis B (HBV) claims an estimated 5,000 lives every year in the
United States, even though we have therapies to both prevent and treat
this disease. This disease is spread through contact with the blood and
body fluids of an infected individual. Unfortunately, due to both a
lack in funding to vaccinate adults at high risk of being infected and
the absence of an integrated preventive education strategy,
transmission of hepatitis B continues to be problematic. Additionally,
there are significant disparities in the occurrence of chronic HBV-
infections. Asian Americans represent four percent of the population;
however, they account for over half of the 1.3 million chronic
hepatitis B cases in the United States. Current treatments have limited
success in treating the chronically infected and there is no treatment
available for those who are considered ``HBV carriers''. Preventive
education and vaccination are the best defense against hepatitis B.
HEPATITIS C
Infection rates for hepatitis C (HCV) are at epidemic proportions.
Unfortunately, as many are not aware of their infection until several
years after infection, we are dealing with an ``epidemic of
discovery''. This creates a vicious cycle, as individuals who are
infected continue to spread the disease, unknowingly. Hepatitis C is
also spread through contact with an infected individual's blood. The
CDC estimates that there are over 4 million Americans who have been
infected with hepatitis C, of which over 2.7 million remain chronically
infected, with 8,000-10,000 deaths each year. Additionally, the death
rate is expected to triple by 2010 unless additional steps are taken to
improve outreach and education on the prevention of hepatitis C, new
research is undertaken, and case-finding is enhanced and more effective
treatments are developed. As there is no vaccine for HCV, prevention
education and treatment of those who are infected serve as the most
effective approach in halting the spread of this disease.
PREVENTION IS THE KEY
Only a major investment in immunization and preventive education
will bring these diseases under control. All newborns, young children,
young adults, and especially those who participate in high-risk
behaviors must be a priority for immunization, outreach initiatives and
preventive education. We recommend that the following activities be
undertaken to prevent the further spread of all types of hepatitis:
--Provide effective preventive education in our elementary and
secondary schools helping children avoid the ravages of health
problems resulting from viral hepatitis infection.
--Training educators, health care professionals, and substance abuse
counselors in effective communication and counseling
techniques.
--Public awareness campaigns to alert individuals to assess their own
risk behaviors, motivate them to seek medical advice, encourage
immunization against hepatitis A and B, and to stop the
consumption of any alcohol if they have participated in risky
behaviors that may have exposed them to hepatitis C.
--Expansion of screening, referral services, medical management,
counseling, and prevention education for individuals who have
HIV/AIDS, many of whom may be co-infected with hepatitis.
HFI recommends an increase of $41 million in fiscal year 2006 for
further implementation of CDC's Hepatitis C Prevention Strategy. This
increase will support and expand the development of state-based
prevention programs by increasing the number of state health
departments with CDC funded hepatitis coordinators. The Strategy will
use the most cost-effective way to implement demonstration projects
evaluating how to integrate hepatitis C and hepatitis B prevention
efforts into existing public health programs. Additionally, HFI
recommends that $10 million be used to train and maintain hepatitis
coordinators in every state.
CDC's Prevention Research Centers, an extramural research program,
plays a critical role in reducing the human and economic costs of
disease. Currently, CDC funds 26 prevention research centers at schools
of public health and schools of medicine across the country. HFI
encourages the Subcommittee to increase core funding for these
prevention centers, as it has been decreasing since this program was
first funded in 1986. We recommend the Subcommittee provide $40 million
for the Prevention Research Centers program in fiscal year 2005.
INVESTMENTS IN RESEARCH
Investment in the National Institutes of Health (NIH) has led to an
explosion of knowledge that has advanced understanding of the
biological basis of disease and development of strategies for disease
prevention, diagnosis, treatment, and cures. Countless medical advances
have directly benefited the lives of all Americans. NIH-supported
scientists remain our best hope for sustaining momentum in pursuit of
scientific opportunities and new health challenges. For example,
research into why some HCV infected individuals resolve their infection
spontaneously may prove to be life saving information for others
currently infected. Other areas that need to be addressed are:
--Reasons why African Americans do not respond to antiviral agents in
the treatment of chronic hepatitis C.
--Pediatric liver diseases, including viral hepatitis.
--The outcomes and treatment of renal dialysis patients who are
infected with HCV.
--Co-infections of HIV/HCV and HIV/HBV positive patients.
--Hemophilia patients who are co-infected with HIV/HCV and HIV/HBV.
--The development of effective treatment programs to prevent
recurrence of HCV infection following liver transplantation.
--The development of effective vaccines to prevent HCV infection.
The Hepatitis Foundation International supports a 6 percent
increase for NIH in fiscal year 2006. HFI also recommends a comparable
increase of 6 percent in hepatitis research funding at the National
Institute of Diabetes and Digestive and Kidney Diseases and the
National Institute of Allergy and Infectious Diseases.
NATIONAL VIRAL HEPATITIS ROUNDTABLE
Victims of hepatitis suffer emotionally as well as physically. They
experience discrimination in employment, strained personal
relationships and severe depression when treatments fail to control
their illness as well as during their treatment. Traditionally,
however, there has not been an organized effort to periodically convene
all stakeholder organizations that play a role in hepatitis prevention,
education, treatment and patient advocacy. Successfully addressing
viral hepatitis will require a comprehensive and strategic approach
developed by all key stakeholders.
In order to fill this void, HFI and CDC co-founded the ``National
Viral Hepatitis Roundtable''. HFI believes that a National Viral
Hepatitis Roundtable will enhance and assist CDC's viral hepatitis
mission for the prevention, control, and elimination of hepatitis virus
infections in the United States, as well as the international public
health community. It will provide an infrastructure for the sharing of
information and education of all stakeholders.
The ``National Viral Hepatitis Roundtable'' is a coalition of
public, private, and voluntary organizations dedicated to reducing the
incidence of infection, morbidity, and mortality from viral hepatitis
in the United States through research, strategic planning,
coordination, advocacy, and leadership.
HFI is dedicated to the eradication of viral hepatitis, which
affects over 500 million people around the world. We seek to raise
awareness of this enormous worldwide problem and to motivate people to
support this important--and winnable--battle. Thank you for providing
this opportunity to present our testimony.
THE HEPATITIS FOUNDATION INTERNATIONAL
The Hepatitis Foundation International (HFI) is dedicated to the
eradication of viral hepatitis, a disease affecting over 500 million
people around the world. We seek to raise awareness of this enormous
worldwide problem and to motivate people to support this important--and
winnable--battle.
Our mission has four distinct parts:
--Teach the public and hepatitis patients how to prevent, diagnose,
and treat viral hepatitis.
--Prevent viral hepatitis by promoting liver wellness and healthful
lifestyles.
--Serve as advocates for hepatitis patients and the related medical
community worldwide.
--Support research into prevention, treatment, and cures for viral
hepatitis.
______
Prepared Statement of the International Foundation for Functional
Gastrointestinal Disorders
SUMMARY OF FISCAL YEAR 2006 RECOMMENDATIONS
--Provide a 6 percent increase for fiscal year 2006 to the National
Institutes of Health (NIH) budget. Within NIH, provide
proportional increases of 6 percent to the various institutes
and centers, specifically, the National Institute of Diabetes
and Digestive and Kidney Diseases (NIDDK).
--Continue to accelerate funding for extramural clinical and basic
functional gastrointestinal research at NIDDK.
--Continue to urge NIDDK to develop a strategic plan setting research
goals on IBS and functional bowel diseases and disorders.
--Urge NIDDK to develop a standardization of scales to measure
incontinence severity and quality of life and to develop
strategies for primary prevention of fecal incontinence
associated with childbirth.
--Provide funding to NIDDK and the National Cancer Institute (NCI)
for more research on the causes of esophageal cancer.
Chairman Specter and members of the Subcommittee, thank you for the
opportunity to present this written statement regarding the importance
of functional gastrointestinal and motility research.
IFFGD has been serving the digestive disease community for fourteen
years. We work to broaden the understanding about functional
gastrointestinal and motility disorders in adults and children.
IFFGD speaks about and raises awareness on disorders and diseases
that many people are uncomfortable and embarrassed to talk about. The
prevalence of fecal incontinence and irritable bowel syndrome, as well
as a host of other gastrointestinal disorders affecting both adults and
children, is underestimated in the United States. These conditions are
truly hidden in our society. Not only are they misunderstood, but the
burden of illness and human toll has not been fully recognized.
Given that we have been diligently working for the past thirteen
years, it is an exciting time to work for IFFGD, not only are we
serving more and more people, but we are beginning to be able to
privately fund research. Our first research awards were made on April
6, 2003.
Since its establishment, the IFFGD has been dedicated to increasing
awareness of functional gastrointestinal disorders and motility
disorders, among the public, health professionals, and researchers. In
November of 2002, we hosted a conference on fecal and urinary
incontinence, the proceedings of which were published in
Gastroenterology, the Official Journal of the American
Gastroenterological Association. During the first week of April 2003 we
also hosted the Fifth International Symposium on Functional
Gastrointestinal Disorders, which was a great success in bringing
scientists from across the world together to discuss the current
science and opportunities on irritable bowel syndrome and other
functional gastrointestinal and motility disorders. The IFFGD has
become known for our professional symposia. We consistently bring
together a unique group of international multidisciplinary
investigators to communicate new knowledge in the field of
gastroenterology. In 1 week, we will be holding the Sixth International
Symposium on Functional Gastrointestinal Disorders.
The majority of the diseases and disorders we address have no cure.
We have yet to understand the pathophysiology of the underlying
conditions. Patients face a life of learning to manage chronic illness
that is accompanied by pain and an unrelenting myriad of
gastrointestinal symptoms. The costs associated with these diseases are
enormous, conservative estimates range between $25-$30 billion
annually. The human toll is not only on the individual but also on the
family. Economic costs spill over into the workplace. In essence these
diseases reflect lost potential for the individual and society. The
IFFGD is a resource and provides hope for hundreds of thousands of
people as they try to regain as normal a life as possible.
FECAL INCONTINENCE
At least 6.5 million Americans suffer from fecal incontinence.
Incontinence is neither part of the aging process nor is it something
that affects only the elderly. Incontinence crosses all age groups from
children to older adults, but is more common among women and in the
elderly of both sexes. Often it is a symptom associated with various
neurological diseases and many cancer treatments. Yet, as a society, we
rarely hear or talk about the bowel disorders associated with multiple
sclerosis, diabetes, colon cancer, uterine cancer, and a host of other
diseases.
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 can cause fecal
incontinence. People who have fecal incontinence may feel ashamed,
embarrassed, or humiliated. Some don't want to leave the house out of
fear they might have an accident in public. Most try to hide the
problem as long as possible, so they withdraw from friends and family.
The social isolation is unfortunate but may be reduced because
treatment can improve bowel control and make incontinence easier to
manage.
In November 2002, the International Foundation for Functional
Gastrointestinal Disorders (IFFGD) sponsored a consensus conference--
``Advancing the Treatment of Fecal and Urinary Incontinence Through
Research: Trial Design, Outcome Measures, and Research Priorities.''
Among other outcomes, the conference resulted in six key research
recommendations:
1. More comprehensive identification of quality of life issues
associated with fecal incontinence and improved assessment and
communication of treatment outcomes related to quality of life.
2. Standardization of scales to measure incontinence severity and
quality of life.
3. Assessment of the utility of diagnostic tests for affecting
management strategies and treatment outcomes.
4. Development of new drug compounds offering new treatment
approaches to fecal incontinence.
5. Development and testing of strategies for primary prevention of
fecal incontinence associated with childbirth.
6. Further understanding of the process of stigmatization as it
applies to the experience of individuals with fecal incontinence.
IRRITABLE BOWEL SYNDROME (IBS)
Irritable Bowel Syndrome affects approximately 30 million
Americans. This chronic disease is characterized by a group of
symptoms, which can include abdominal pain or discomfort associated
with a change in bowel pattern, such as loose or more frequent bowel
movements, diarrhea, and/or constipation. Although the cause of IBS is
unknown, we do know that this disease needs a multidisciplinary
approach in research and treatment.
Similar to fecal incontinence and depending on severity, IBS can be
emotionally and physically debilitating. Because of persistent bowel
irregularity, individuals who suffer from this disorder may distance
themselves from social events, work, and even may fear leaving their
home.
In the House and Senate fiscal year 2003, 2004, and 2005 Labor,
Health and Human Services, and Education Appropriations bills, Congress
recommended that the National Institute of Diabetes and Digestive and
Kidney Diseases (NIDDK) develop an IBS strategic plan. The development
of a strategic plan on IBS would greatly increase the institute's
progress toward the needed research on this functional gastrointestinal
disorder.
GASTROESOPHAGEAL REFLUX DISEASE (GERD)
Gastroesophageal reflux disease, or GERD, is a very common disorder
affecting both adults and children, which results from the back-flow of
acidic stomach contents into the esophagus. GERD is often accompanied
by persistent symptoms, such as chronic heartburn and regurgitation of
acid. But sometimes there are no apparent symptoms, and the presence of
GERD is revealed when complications become evident. Symptoms of GERD
vary from person to person. The majority of people with GERD have mild
symptoms, with no visible evidence of tissue damage and little risk of
developing complications. Periodic heartburn is a symptom that many
people experience. There are several treatment options available for
individuals suffering from GERD.
Gastroesophageal reflux (GER) affects as many as one third of all
full term infants born in America each year. GER results from an
immature upper gastrointestinal motor development. The prevalence of
GER is increased in premature infants. Many infants require medical
therapy in order for their symptoms to be controlled. Up to 25 percent
of older children and adolescents will have GER or GERD due to lower
esophageal sphincter dysfunction. In this population, the natural
history of GER is similar to that of adult patients, in whom GER tends
to be persistent and may require long-term treatment.
ESOPHAGEAL CANCER
Approximately 13,000 new cases of esophageal cancer are diagnosed
every year in this country. Although the causes of this cancer are
unknown, it is thought that this cancer may be more prevalent in
individuals who develop Barrett's esophagus. Diagnosis usually occurs
when the disease is in an advanced stage, early screening tools are
currently unavailable.
CHILDHOOD DEFECATION DISORDERS AND DISEASES
Chronic Intestinal Pseudo-Obstruction (CIP).--About 200 new cases
of CIP are diagnosed in American Children each year. Often life
threatening, the future for children severely affected with CIP is
brightened by the evolving promise of cure with intestinal or multi-
organ transplantation.
Hirschsprung's disease.--A serious childhood and sometimes life-
threatening condition that can cause constipation, occurs only once in
every 5,000 American children born each year. Approximately 20 percent
of children with HD will continue to have complications following
surgery. These complications include infection and/or fecal
incontinence.
Functional constipation.--Millions of children (1 in every 10) each
year will be diagnosed with functional constipation. In fact, it is the
chief complaint of 3 percent of pediatric outpatient visits and 10-25
percent of pediatric gastroenterology visits.
FUNCTIONAL GASTROINTESTINAL AND MOTILITY DISORDERS AND THE NATIONAL
INSTITUTES OF HEALTH
The International Foundation for Functional Gastrointestinal
Disorders recommends an increase of 6 percent or 1.7 billion for NIH
overall, and a 6 percent increase for NIDDK. However, we request that
this increase for NIH does not come at the expense of other Public
Health Service agencies.
We urge the subcommittee to provide the necessary funding for the
expansion of the NIDDK's research program on functional
gastrointestinal (FGI) and motility disorders, this increased funding
will allow for the growth of new research, a prevalence study and a
strategic plan on IBS, and increased public and professional awareness
of FGI and motility disorders.
A primary tenant of IFFGD's mission is to ensure that clinical
advancements concerning GI disorders result in improvements in the
quality of life of those affected. By working together, this goal will
be realized and the suffering and pain millions of people face daily
will end.
Thank you.
The International Foundation for Functional Gastrointestinal Disorders
The International Foundation for Functional Gastrointestinal
Disorders is a nonprofit education and research organization founded in
1991. IFFGD addresses the issues surrounding life with gastrointestinal
(GI) functional and motility disorders and increases the awareness
about these disorders among the general public, researchers, and the
clinical care community.
______
Prepared Statement of the Lymphoma Research Foundation
I am Melanie Smith, Director of Public Policy and Advocacy for the
Lymphoma Research Foundation (LRF). LRF appreciates the opportunity to
submit this statement to the record of the Labor, Health and Human
Services and Education Appropriations Subcommittee. The LRF is the
nation's largest lymphoma-focused voluntary health organization devoted
exclusively to funding lymphoma research and providing patients and
healthcare professionals with critical information on the disease. Our
ultimate goal is to find a cure for all forms of lymphoma. To that end,
we fund some of the world's leading lymphoma researchers at outstanding
academic institutions. These researchers are engaged in research aimed
at understanding the basic mechanisms of lymphoma and improving the
current treatments for the disease. LRF also aims to equip those who
are diagnosed with lymphoma with up-to-date information about treatment
options. The organization sponsors educational conferences at which the
leaders in lymphoma research and treatment address patients and
families regarding cutting edge research and the most recent
developments in therapies.
BACKGROUND ON LYMPHOMA
Lymphoma is a major health problem. It is the most common form of
blood cancer and the third most common form of childhood cancer. In
2005, approximately 56,390 cases of non-Hodgkin's lymphoma (NHL) will
be diagnosed in this country, and more than 19,000 Americans will die
from NHL. Also this year, 7,350 cases of Hodgkin's lymphoma will be
diagnosed, and more than 1,400 Americans will die from the disease.
Nearly 500,000 Americans are living with lymphoma.
In recent years, there have been exciting reports regarding the
improvements in treatments for a number of forms of cancer, as well as
reports that the incidence of cancer overall is declining. Regrettably,
NHL stands in contrast to the general trends in cancer incidence, and
the treatment options for NHL remain inadequate. Since the early 1970s,
incidence rates for NHL have nearly doubled, although incidence rates
have stabilized the last few years. And the 5-year survival rate for
NHL stands at 59 percent. These are not satisfactory numbers, and they
serve as measures of the work we still have to do.
RESEARCH ON LYMPHOMA
We have learned a great deal about the genetic, molecular, and
cellular basis of cancer. We do not know the cause of most lymphomas,
but there is increasing information to suggest a link between
environmental factors and infections and the development of many
lymphomas. The environmental factors may include chemicals, toxins,
drugs, infectious agents, such as hepatitis C and Epstein Barr virus,
and the gastric pathogen Helicobacter pylori. There is strong evidence
that in some individuals, immune dysfunction is a critical factor in
the development of lymphoma.
Our knowledge of cancer has improved significantly in the last
decade, in large part due to the strong commitment of Congress to the
National Institutes of Health (NIH) and its willingness to boost NIH
funding. These funds have supported strong basic and clinical
researchers who are focused on unlocking the secrets to cancer. There
is a need to sustain that commitment to NIH, in order to equip
scientists engaged in basic research and facilitate the translation of
basic research findings into new treatments. This is certainly true in
the case of lymphoma. There is a need to clarify the interactions among
the environmental, viral, and immunogenetic factors that contribute to
development of lymphoma and to ensure the development of new treatments
based on our enhanced understanding of lymphoma.
Over the last decade several new lymphoma treatments have been
developed, expanding the options for those who are diagnosed with the
disease. Lymphoma patients and researchers have clearly benefited from
the nation's significant investment in research, and Congress deserves
the appreciation of the community of lymphoma patients and researchers.
Among the lymphoma treatments approved in the last decade are a
monoclonal antibody and two different radioimmunotherapies. While we
applaud the new treatments of the last decade, they are not magic
bullets. For many, lymphoma remains a fatal disease.
New therapies that capitalize on different research approaches are
currently under investigation. These include therapeutic vaccines,
immunotherapies, proteasome inhibitors, and examination of the
microenvironment of lymphomas. Other work is focused on refining the
chemotherapy regimens and developing treatment regimens with lower
toxicities. All of this work deserves the support of private and public
research funders.
ROLE OF NIH IN LYMPHOMA RESEARCH
Although LRF plays a critical and creative role in funding lymphoma
research, NIH is, and will remain, the key player in this field. NIH is
the pivotal player not only because of the magnitude of its financial
commitment to lymphoma research, but also because of the role it can
play in bringing together all of the partners in the research
community--NIH intramural researchers, academic researchers, private
foundations, industry, and the Food and Drug Administration (FDA).
NIH is also in the best position to encourage, facilitate, and fund
the translation of basic research findings into new treatments. It is
absolutely critical that we not lose the research momentum that has
been the result, in significant part, because of the doubling of the
NIH budget between fiscal year 1999 and fiscal year 2003. We recognize
that funding for NIH will not be increased as rapidly in the near
future as it was from fiscal year 1999 to fiscal year 2003, but we urge
Congress to protect the investment in NIH research and to realize that
a rapid deceleration in research funding threatens the past investment.
LRF recommends that Congress urge NIH to direct special attention
to translational and clinical research. LRF proposes that NIH
strengthen its lymphoma research program by several actions:
--The National Cancer Institute (NCI) should boost its support for
translational and clinical lymphoma research. NCI should
evaluate its current investment in clinical research and expand
or initiate programs to strengthen the clinical research
effort.
--NCI should also increase its support for correlative studies of
tumor biology and treatment response, as well as its investment
in research on the late and long-term effects of current
lymphoma treatments.
--NCI should strengthen its research effort focused on understanding
the complex interaction among environmental, viral and
immunogenetic factors that are involved in the initiation and
promotion of lymphoma.
--Although NCI has historically been the lead institute in funding
lymphoma research, other institutes--the National Heart, Lung,
and Blood Institute (NHLBI), the National Institute on Aging
(NIA), and the National Institute of Environmental Health
Sciences (NIEHS)--should also evaluate and improve their
lymphoma research programs. A lymphoma-focused program to
investigate environmental/viral links is warranted.
A strong partnership among voluntary health agencies like LRF,
academic researchers, industry, and NIH will be optimal for advancing
lymphoma research and improving the outlook for those who are diagnosed
with the disease. New strategies are necessary for the rapid
translation of basic research findings into new treatments. These
strategies may include systems for funding collaborative research
projects that engage researchers in multiple institutions and multiple
disciplines, including academic researchers and industry. Private
foundations are looking at creative means to ensure that their research
dollars are optimized, and we encourage NIH to employ the same creative
and flexible approaches.
ROLE OF THE CENTERS FOR DISEASE CONTROL AND PREVENTION IN BLOOD CANCER
EDUCATION
LRF is actively engaged in providing patients and their families
and caregivers complete and up-to-date information about lymphoma,
lymphoma research, and lymphoma treatment options. Because of our
strong history in this area, we were gratified when Congress authorized
and funded a program at the Centers for Disease Control and Prevention
(CDC) for public and patient education on blood cancers. LRF was one of
nine organizations that received grants, funded by fiscal year 2004
appropriations, for public and patient education regarding the blood
cancers. The benefits of our federally funded program, Lymphoma
Awareness for Multicultural Populations (LAMP), which includes outreach
to underserved communities, are already being realized.
Congress was also generous in providing funding for this program in
fiscal year 2005, an action that will allow the organizations to
continue their programs and conduct full evaluations of their
strategies for outreach and education. We urge Congress to provide a
third year of funding, because the programs are being operated on a 3-
year cycle. Their full potential will be realized only if they run for
the full 3-year anticipated cycle.
LRF believes that strong partnerships will be a key feature of
efforts to improve lymphoma treatments and provide lymphoma patients
current information about their disease and treatment options. We
encourage NCI to fund collaborative research ventures, and we urge CDC
to continue its support of those private organizations that have years
of experience in patient education. Those who receive a diagnosis of
lymphoma face difficult choices, and we must work together to improve
their options and their lives.
______
Prepared Statement of Mended Hearts, Inc.
I am Robert H. Gelenter, a volunteer for the Mended Hearts, Inc., a
national heart disease patient support group with more than 289
chapters across the United States and in Canada. We visit patients in
approximately 460 hospitals throughout the United States. I have been
appointed by the group to assist in this lobbying effort--a volunteer
position.
More than 29 years ago, I was diagnosed with a rare heart disease.
After having severe chest pains and trouble breathing for more than two
years, I was diagnosed with hypertrophic cardiomyopathy (HCM), a
disease in which the heart enlarges. The heart muscle eventually
thickens so much that it can't pump blood effectively. The heart muscle
does not grow in the normal parallel patterns. Rather it grows in a
haphazard manner. It affects men and women of all ages. When you read
of a young athlete who has dropped dead on an athletic field the odds
are very good that he or she had HCM. HCM is one of the leading causes
of sudden cardiac death. There is no cure for this disease.
Medication may work and there is a surgical procedure that may
alleviate the pain. If that doesn't work a patient may need a heart
transplant, yet spare organs are scarce. The doctor who made my
diagnosis was trained at the National Heart, Lung, and Blood Institute
of the National Institutes of Health.
Initially, I received several medications, which allowed me to
engage in most activities. But, some activities, such as walking up
hills, caused severe shortness of breath and severe chest pains. But,
generally I could function normally. However, after about 11 years, the
discomfort was increasing, and it became apparent that I was in serious
trouble. I could not walk 60 feet without having to stop to catch my
breath. Sometimes the pain was so great that I would almost double over
in the middle of the street. My wife told me that my face would become
gray. The perspiration would pour off my body. If I was lucky I could
find a chair to sit on. The quality of my life had deteriorated so
drastically that I knew I needed some treatment.
In 1988, I went to Georgetown University Medical Center for an
angiogram--the gold standard for diagnosing heart problems. The
cardiologist who performed the angiogram told me that he had bad news
and worse news. The bad news was that I had a 95 percent blockage in my
left anterior descending heart artery--the so-called ``widow makers
spot.'' The worse news was that I had a major chance of having a severe
heart attack with a less than a 5 percent chance of surviving that
heart attack because of the hypertrophic cardiomyopathy. At this point,
my wife was quietly crying and I was perspiring profusely. Since
Georgetown University Medical Center did not have the expertise to
operate on me, they called the NIH to see if they would accept me as a
patient. I was sent home pending notice from the NIH.
The NIH accepted me. After entering the National Heart, Lung, and
Blood Institute on February 6, I was operated on February 11, 1988. No
matter how trite the expression--that was the first day of the rest of
my life. The surgery, considered drastic and rare as it is, is still
the gold standard throughout the world for the treatment of
hypertrophic cardiomyopathy. The Murrow Procedure, in honor of the
innovator, was developed and improved at the NIH.
Although this surgery is no longer performed at the National Heart,
Lung, and Blood Institute, there is another experimental ongoing
protocol in which the same effect is being attempted by using alcohol
to deaden the excessive heart tissue.
I am on medication for the rest of my life. My condition is
progressive. Ten years ago, I was fitted with a pacemaker to insure
that my heart beats at the correct rate. I am 100 percent dependent on
this pacemaker. Without the pacemaker, there are times when my normal
heart beat is so slow that I would die.
I am eternally grateful to the physicians funded by the National
Heart, Lung, and Blood Institute, particularly to Dr. MacIntosh and his
staff, for the gift of life. Because of this marvelous research
supported by the NHLBI, I have lived 17 years pain free. I have seen
two children graduate from college and three grandchildren born, I have
shared these years with a wonderful wife. I have been able to work at
my profession--attorney at law.
I have had the gift of life restored to me. To express my gratitude
for that gift, I visit patients recovering from heart episodes at two
hospitals, Washington Hospital Center and Washington Adventist
Hospital.
If this tale of woe is not enough about 2\1/2\ years ago, I
suddenly began to have mini strokes. I experienced four episodes within
7 months. The last episode was just a year ago. Medication now seems to
have the incidents under control.
I respectfully ask for the fiscal year 2006 appropriation in the
following amounts:
--NIH $30 billion, including $2.3 billion for heart research and $341
million for stroke;
--NHLBI $3.1, including $1.9 billion for heart and stroke-related
research; and
--NINDS $1.6 billion, including $183 million for stroke research.
My experience is proof that the research supported by the National
Heart, Lung, and Blood Institute and the National Institute for
Neurological Disorders and Stroke benefits not just the patients at the
NIH Clinical Center, but throughout the United States. The benefits go
worldwide as well.
Heart attack, stroke and other cardiovascular diseases remain the
No. 1 killer and major cause of disability of men and women in the
United States. Nearly 40 percent of people who die in the United States
die from cardiovascular diseases. Last year, nearly 930,000 Americans
died from cardiovascular diseases, including more than 150,000 under
the age of 65.
Thank you for your support of National Heart, Lung, and Blood
Institute's heart research and the National Institute for Neurological
Disorders and Stroke's stroke research.
______
Prepared Statement of the March of Dimes Birth Defects Foundation
The 3 million volunteers and 1,400 staff members of the March of
Dimes appreciate the opportunity to submit the Foundation's federal
funding recommendations for fiscal year 2006. The March of Dimes is a
national voluntary health agency founded in 1938 by President Franklin
D. Roosevelt to prevent polio. Today, the Foundation works to improve
the health of mothers, infants, and children by preventing birth
defects and infant mortality through research, community services,
education, and advocacy. The March of Dimes is a unique partnership of
scientists, clinicians, parents, members of the business community, and
other volunteers affiliated with 52 chapters in every state, the
District of Columbia and Puerto Rico.
The volunteers and staff of the March of Dimes are deeply concerned
that the funding recommendations and levels in the President's Budget
and congressional Budget Resolutions will not be sufficient to support
biomedical research and services needed to improve the health of
children and families. For instance, the infant mortality rate
increased in 2002 for the first time since 1958. Increases in deaths
due to premature birth, birth defects, and maternal complications
during pregnancy account for most of the increase. In our judgment, the
funding increases recommended below are fully justified and would have
an immediate positive impact on this disturbing trend and thereby lead
to an overall improvement in the health of the nation's children.
NATIONAL INSTITUTES OF HEALTH
The March of Dimes joins the larger research community in
recommending a 6 percent increase in funding for the National
Institutes of Health (NIH), bringing total federal support to just over
$30 billion. The Administration's fiscal year 2006 budget proposal is
insufficient to keep up with inflation and certainly will not sustain
the necessary investment in medical research.
National Institute for Child Health and Human Development
The mission of the National Institute for Child Health and Human
Development (NICHD) is closely aligned with that of the March of Dimes.
According to the National Center for Health Statistics (NCHS), in 2002,
more than 480,000 babies were born prematurely in the United States--1
in 8 births. Premature birth accounts for nearly 24 percent of deaths
in the first month of life. Those babies that survive are more likely
than full-term infants to face serious multiple health problems
including cerebral palsy, mental retardation, chronic lung disease, and
vision and hearing loss. Preterm labor can happen to any pregnant woman
and the causes of nearly half of all preterm births are unknown.
The NICHD has made a major commitment to understanding and
preventing premature birth but additional funding is desperately
needed. The March of Dimes recommends a 10 percent increase for NICHD
in fiscal year 2006 and an increase of at least $100 million over the
next five years to boost prematurity-related research. This increase
should be devoted to a comprehensive biomedical research program to
study preterm delivery etiology, prevention, and treatment regimens.
Last year, the NCHS reported the first increase in the U.S. infant
mortality rate since 1958 and 61 percent of this increase was due to an
increase in the birth of premature and low birth weight babies. An
analysis of Agency for Healthcare Research and Quality data conducted
by the March of Dimes Perinatal Data Center estimated that the total
national hospital bill for premature babies was $15.5 billion in 2002.
The financial burden of prematurity is expected to continue to worsen
until prevention of preterm births is better understood and clinical
interventions are developed.
The NICHD began a major new initiative involving genomic and
proteomic research into the causes of premature birth in an effort to
accelerate knowledge in the mechanisms responsible for premature birth.
The RFA soliciting proposals for the establishment of a collaborative
network for premature birth research was issued in June 2004. The NICHD
received an excellent response to this RFA and had anticipated the
start of this initiative in early 2005. The March of Dimes is very
disturbed that the start of this crucial initiative has now been
delayed because of insufficient funding.
Unfortunately, even a 10 percent increase in funding would not be
enough to enable NICHD to begin implementing the National Children's
Study (NCS) of environmental and genetic influences on child health and
development. The goal of the NCS is to pinpoint causes and find
prevention and treatment strategies for many of today's childhood
diseases and disorders. The planning of the study is largely complete
and the study is ready to be piloted. On November 16, 2004, the Request
for Proposals for the first NCS study sites and the data-coordinating
center were published. But beyond the pilot sites, the future of this
important study is uncertain without additional funding. The cost of
this study is dwarfed by the $269 billion annual cost of treating the
diseases and conditions it is designed to address, including preterm
birth, according to NICHD estimates. If study findings were to result
in only a 1 percent reduction in those costs, the expense of the entire
study could be recovered in a single year. The March of Dimes believes
it would be shortsighted to put off this study.
CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC)
Division of Reproductive Health
The National Center for Chronic Disease Prevention and Health
Promotion, Division of Reproductive Health works to promote optimal
reproductive and infant health, but does not have the resources it
requires to study the growing problem of preterm birth. Therefore, the
March of Dimes recommends a $20 million increase in fiscal year 2006 to
expand research related to preterm birth. Worsening rates of preterm
birth require an expanded, comprehensive prevention research agenda to
identify the causes, risk factors, and to find clinical interventions
that are effective in preventing preterm labor. In particular, two
specific programs should receive additional funding: (1) the Pregnancy
Risk Assessment Monitoring System and (2) epidemiological research.
The Pregnancy Risk Assessment Monitoring System (PRAMS) is a state-
specific, population based surveillance system designed to identify and
monitor maternal behaviors and experiences before, during, and after
pregnancy. Currently, CDC supports cooperative agreements with 29
states and New York City through which PRAMS monitors approximately 62
percent of all U.S. births. Data collected through PRAMS is used by
researchers and policy makers to increase understanding of adverse
pregnancy outcomes, to develop maternal and child health programs, and
to incorporate the most up to date research findings into standards of
practice. The March of Dimes recommends an increase of $5 million to
expand PRAMS so that CDC can develop better national estimates on
behavioral as well as demographic risk factors for preterm birth.
Epidemiological research conducted at CDC is vital to reducing the
incidence of preterm birth. The March of Dimes recommends an increase
of $15 million to expand research on the prevention of preterm delivery
for women at risk, focusing especially on factors contributing to
higher rates of preterm delivery among African-American women.
Increasing CDC's activities related to identifying the causes of
preterm birth would improve early detection of women at risk for
preterm labor and lead to new interventions for those at greatest risk.
National Center on Birth Defects and Developmental Disabilities
Created by the Children's Health Act of 2000 (Public Law 106-310),
the National Center on Birth Defects and Developmental Disabilities
(NCBDDD) conducts programs to protect and improve the health of
children and adults by preventing birth defects and developmental
disabilities; promoting optimal child development and health and
wellness among children and adults with disabilities. The March of
Dimes recommends at least $135 million in fiscal year 2006 funding for
the NCBDDD.
Of particular interest to the March of Dimes is the NCBDDD's
comprehensive birth defects program that includes surveillance,
research and prevention activities. Of the four million babies born
each year in the United States, 3 percent are born with one or more
birth defects. Birth defects are the leading cause of infant mortality,
accounting for more than 20 percent of all infant deaths. Children with
birth defects who survive often experience lifelong physical and mental
disabilities. In fact, birth defects contribute substantially to the
nation's health care costs. According to CDC, the medical treatments
and supportive services for the 17 most common birth defects exceed $8
billion annually. A modest increase of $6 million in funding for
surveillance, research and prevention activities is a vital step to
making progress in reducing the incidence of birth defects.
NCBDDD provides funding to states to develop, implement, and/or
expand community-based birth defects surveillance systems, programs to
prevent birth defects, and activities to improve access to health
services for children with birth defects. Surveillance is vitally
important for the early detection of new birth defects, for discovering
the causes of birth defects and for evaluating the effectiveness of
prevention programs. Due to lack of funds, CDC will only fund 15 states
in fiscal year 2005, down from 28 states in fiscal year 2004.
Additional resources are needed to fund all states seeking CDC
assistance and increase assistance to states already receiving funds.
The National Birth Defects Prevention Study is the largest case-
control study of birth defects ever conducted. This CDC-funded study is
being carried out by 9 regional Centers for Birth Defects Research and
Prevention located in Arkansas, California, Georgia, Iowa,
Massachusetts, New York, North Carolina, Texas, and Utah. These centers
obtain data and identify cases for inclusion in the study and conduct
epidemiological research on birth defects. With adequate funding, this
study has the potential to dramatically increase understanding of the
causes of birth defects and is already providing information for
improvement of programs to prevent birth defects. The causes of nearly
70 percent of birth defects are still unknown.
The centers study possible genetic and environmental causes, the
use of certain medications during pregnancy, maternal diet, and vitamin
use. This study provides the nation a continuing source of information
on potential causes of birth defects. For example, in response to a
scientific study showing a possible association between the drug
loratadine, also sold under the brand name Claritin, and the
occurrence of the birth defect hypospadias the National Birth Defects
Prevention Study conducted a review that showed no association. This
information is useful to physicians as well as women who take
loratadine and become pregnant.
The NCBDDD also is conducting a national public and health
professions education campaign designed to increase the number of women
taking folic acid. CDC estimates that up to 70 percent of neural tube
defects (NTDs), serious birth defects of the brain and spinal cord
including anencephaly and spina bifida, could be prevented if all women
of childbearing age consume 400 micrograms of folic acid daily,
beginning before pregnancy. Since fortification of U.S. enriched grain
products with folic acid, the rate of NTDs in the United States has
decreased by 26 percent. It is critical that CDC increase its campaign
efforts to educate every woman of childbearing age and their providers
about the importance of folic acid to further reduce the rates.
Therefore, the March of Dimes recommends an appropriation of at least
$4 million in fiscal year 2006 for the Folic Acid Education Campaign.
ADDITIONAL CDC PROGRAMS
National Immunization Program
If we are to meet the Healthy People 2010 goals of vaccinating 90
percent of children and adults, CDC, states and localities will need
sufficient resources to ensure that those in need of immunizations
receive them. Annually, 4 million children should be immunized against
12 preventable diseases before the age of two. Yet, nearly 25 percent
of two-year-olds have not received all of the recommended vaccine
doses. CDC's National Immunization Program provides grants to 64 state,
local, and territorial public health agencies to reduce the incidence
of disability and death resulting from vaccine preventable diseases. To
move the nation closer to the goal of vaccinating at least 90 percent
of children and adults, the March of Dimes urges the Subcommittee to
continue its longstanding policy of ensuring that federal vaccine
programs are adequately funded. For fiscal year 2006, the March of
Dimes recommends an overall increase of $232 million in order to ensure
that the National Immunization Program has the resources it needs to
account for vaccine price increases, introduction of new vaccines, and
to facilitate implementation of recommendations developed by the
Institute of Medicine.
Polio Eradication
April 12, 2005 marks the 50th anniversary of the declaration that
the poliovirus vaccine developed by Dr. Jonas Salk was safe and
effective. The March of Dimes, formerly known as the National
Foundation for Infantile Paralysis, funded Dr. Salk's groundbreaking
work on the polio vaccine. Although eradication of polio in the United
States resulted in a shift in the Foundation's focus to a new set of
challenges pertaining to children's health, the March of Dimes
continues to support completing the task of polio eradication
worldwide. Global polio eradication will save lives and reduce
unnecessary health-related costs. The March of Dimes supports a funding
level of $106.4 million for CDC's fiscal year 2006 global polio
eradication activities. With polio epidemics now confined to only 6
countries (Nigeria, India, Pakistan, Niger, Egypt and Afghanistan), it
is important that the U.S. government maintain its commitment to
completion of the worldwide eradication initiative.
National Center for Health Statistics
The Foundation also supports the vital work of the National Center
for Health Statistics (NCHS), which provides data essential for
research and programmatic initiatives. For example, the National Vital
Statistics System is a major source of information on the utilization
of prenatal care and on adverse birth outcomes such as preterm births,
low birthweight, and infant mortality. Increased funding would allow
CDC to modernize this system using web-based technology that
facilitates rapid compilation of accurate and comprehensive data
obtained from health professionals and facilities. This information is
needed to track trends in birth outcomes and to support birth defects
registries. Data from NCHS' surveys are also important to identify
emerging trends and optimal uses of existing program resources.
Additional resources would also enable CDC to continue the National
Survey of Family Growth, which provides essential information on
factors affecting birth outcomes.
HEALTH RESOURCES AND SERVICES ADMINISTRATION (HRSA)
Newborn Screening
Newborn screening is a vital public health activity used to
identify genetic, metabolic, hormonal and/or functional conditions in
newborns that left untreated can cause disability, mental retardation,
and even death. Although nearly all babies born in the United States
are screened for some genetic birth defects, the number and quality of
these tests varies from state to state. The March of Dimes recommends
that every baby born in the United States receive, at a minimum,
screening for a core set of 29 metabolic disorders including hearing
deficiencies.
In fiscal year 2005, the Congress provided funding for
implementation of Title XXVI of the Children's Health Act of 2000. This
program is designed to strengthen state newborn screening programs; to
improve states' ability to develop, evaluate, and acquire innovative
testing technologies; and to establish and improve programs to provide
screening, counseling, testing and special services for newborns and
children at risk for heritable disorders. Unfortunately, funding for
Title XXVI activities was obtained by diverting a portion of the SPRANS
section of the Maternal and Child Health Block Grant which the
Administration proposes to level fund in fiscal year 2006. The March of
Dimes recommends that Title XXVI of the Children's Health Act be funded
at a level of $25 million in new money to support HRSA's work with
states to improve newborn screening programs across the nation.
Maternal and Child Health Block Grant
Federal funding for Title V of the Social Security Act, the
Maternal and Child Health (MCH) Block Grant, has failed to keep pace
with increased demand for services. Although the Block Grant provides
funds for a growing number of community-based programs such as home
visiting, respite care for children with special health care needs and
``wrap around'' services for pregnant women and children enrolled in
Medicaid and SCHIP, the funding level for the Grant has not increased
since fiscal year 2002. In order for maternal and child health programs
to continue to shoulder responsibility for additional services, it must
be adequately funded. The March of Dimes recommends fully funding Title
V at the authorized level of $850 million.
Thank you for the opportunity to testify on the federally supported
programs of highest priority to the March of Dimes. The Foundation's
staff and volunteers look forward to working with Members of the
Subcommittee to improve the health of mothers, infants and children.
MARCH OF DIMES FISCAL YEAR 2006 FEDERAL FUNDING PRIORITIES
[In millions of dollars]
------------------------------------------------------------------------
March of Dimes
Program Fiscal year 2005 fiscal year 2006
funding recommendation
------------------------------------------------------------------------
National Institutes of Health 28,444.0 30,150.0
(Total)............................
National Institute of Child 1,270.0 1,397.0
Health & Human Development.....
National Human Genome Research 489.0 518.0
Institute......................
National Center on Minority 196.0 208.0
Health and Disparities.........
Centers for Disease Control and 8,034.0 8,650.0
Prevention (Total).................
Center on Birth Defects and 125.0 135.0
DevelopmentalDisabilities......
Birth Defects Research & 14.0 20.0
Surveillance...................
Folic Acid Education Campaign... 2.0 4.0
Immunization.................... 479.0 711.0
Polio Eradication............... 106.4 106.4
Safe Motherhood/Infant Health 45.0 65.0
(NCCDPHP)......................
Pregnancy Risk Assessment 7.3 12.3
Monitoring System..............
Prevention Research (Preterm 1.5 16.5
Birth).........................
National Center for Health 109.0 118.0
Statistics.....................
Health Resources and Services 6,809.0 7,500.0
Administration (Total).............
Maternal and Child Health Block 730.0 850.0
Grant..........................
Newborn Screening............... 2.0 25.0
Newborn Hearing Screening....... 10.0 10.0
Consolidated (Community) Health 1,734.0 2,038.0
Centers........................
Healthy Start................... 102.0 102.0
Agency for Healthcare Research and 319.0 440.0
Quality............................
------------------------------------------------------------------------
______
Prepared Statement of the National Coalition for Heart and Stroke
Research
My name is Jack Owen Wood. I solicit your support for more
aggressive federal funding for research into prevention and treatment
of the sister diseases, stroke and heart disease. Strokes and heart
attacks are occurring at an alarming rate.
I am representing the National Coalition for Heart and Stroke
Research. The coalition consists of 18 national organizations
representing more than 5 million volunteers and members united in
support for increased funding for heart and stroke research. Members of
the Coalition include:
American Academy of Neurology; American Academy of Physical
Medicine and Rehabilitation; American Association of Neurological
Surgeons; American College of Cardiology American College of Chest
Physicians; American Heart Association; American Neurological
Association; American Stroke Association; American Vascular Association
Foundation; Association of Black Cardiologists; Children's
Cardiomyopathy Foundation, Inc.; Citizens for Public Action on Blood
Pressure and Cholesterol, Inc.; Congress of Neurological Surgeons;
Heart Rhythm Society; Mended Hearts, Inc.; National Stroke Association;
Society of Interventional Radiology; and Society for Vascular Surgery.
I will deal primarily with one man's personal experience with
stroke and its functional and financial costs--my own. I have only the
use of my right arm.
I was born in 1937, raised in Vicksburg, Mississippi, earned an
engineering degree at Mississippi State University and currently reside
in Port Orchard, Washington. I worked for the Boeing Company in
Seattle, am a former Director of the Washington State Energy Office,
served as Director of Cost and Revenue Analysis and as the Forcasting
Manager for a major Northwest Area Natural Gas Utility until May 1,
1995.
On May 1, 1995, at the age of 57, I was stricken and severely
disabled by my stroke. Two years later I experienced a triple bypass
heart operation. You might say I've ``been there and done that'' for
both major cardiovascular diseases. So you see, I am an expert.
Years ago I was offered an exciting and rewarding volunteer
opportunity. I was asked to lead the ``Jack Wood Stroke Victor Tour''
for the American Heart Association.
The Jack Wood Stroke Victor Tour was a 5-state lobbying tour.
Through it I tried to meet personally with every Northwest
Congressional representative on his or her home turf (in Alaska, Idaho,
Montana, Oregon and Washington). In each meeting I was joined by local
people, stroke survivors and their families and medical professionals.
I told my story and asked them to join the Congressional Heart and
Stroke Coalition and to support increased federal funding for heart and
stroke research.
I am proud to say I traveled to 18 communities and met personally
with 28 members of our delegation or their staff.
One of the most powerful memories for me was the frequency in which
Members of Congress or staff members related their personal experience
with stroke. One member I spoke to lost both parents to stroke. I
suspect many of you have stories too.
I realize your interest is greater than the physical impact of my
stroke. Your concern must include the financial impact, not only to me,
but also on our country from increased health care costs and lost
productivity and its many implications.
I have confronted the difficult and painful task of calculating
that cost to me. Besides being a man whose stroke took his ability to
pick up and play with his grandchildren and his livelihood, I remain a
statistician at heart. I could not resist calculating and telling that
part of my story. But please remember my story is not dissimilar to
that of many of the 5.4 million stroke survivors in the United States.
Many of whom were stricken in their prime earning years. Who in a
matter of moments, seemingly without warning, are transformed from a
contributor and provider to a receiver and patient.
Allow me to highlight three figures that I feel sum up my data and
should be important to you. I estimate that my stroke at age 57:
--Reduced my earnings before retirement age 65 by more than $600,000.
--Subsequently, the cost to the federal government in lost income and
other taxes, early Medicare payments and Social Security
disability payments is more than $320,000.
--My HMO spent approximately $150,000 to respond to and treat my
stroke.
--One man, over $1 million.
About 700,000 Americans will suffer a stroke this year costing this
nation an estimated $57 billion in medical expenses and lost
productivity.
Earlier I described a stroke as occurring seemingly without
warning. All too often as in my case, people either don't know or
ignore the signs of a stroke, even one in progress. When my stroke hit
I denied it. It took me two days after my stroke to acknowledge it and
seek help. Because of research into new treatments, we now have tPA, a
clot-busting drug, which if administered within 3 hours of the onset of
stroke symptoms, can dramatically reduce the damage of clot-based
strokes. Had I recognized and acknowledged my stroke, gone to a
hospital with a neurologist on staff and had there been tPA, the impact
of my stroke most certainly would have been lessened.
What is even more painful to me is that my impending stroke could
have been detected. Unfortunately, we need to create easier and less
expensive diagnostic techniques so that effective diagnostics can be
given routinely as part of regular health exams. And they must be
covered through insurance.
I am not asking for your sympathy. Instead, please think of me as
two of the ghosts in the famous Dickens' story. Please don't
misunderstand, I am not casting you as Scrooge. See me as both the
ghosts of things past and things yet to be. I too am here to tell you,
the future, which I represent, needs not be. It is largely up to you.
I hope my story and estimate of the cost of my stroke convinces you
that taking on stroke and heart disease through increased research,
leading to better prevention, diagnosis and treatment is fiscally
responsible. The human and financial costs are astronomical.
Thank you for your past support of research.
______
Prepared Statement of the National Hemophilia Foundation
Thank you for the opportunity for the National Hemophilia
Foundation (NHF) to submit testimony to the Chairman and Members of the
Appropriations Subcommittee on Labor, Health and Human Services,
Education, and Related Agencies. NHF is a national voluntary health
organization dedicated to improving the health and welfare of people
affected by bleeding and clotting disorders, including hemophilia,
women's bleeding disorders, and thrombophilia.
BACKGROUND
Bleeding and clotting disorders are caused by genetic defects in
the body's blood coagulation system, usually a missing protein that
prevents or slows down blood clotting, or sometimes causes excessive
clotting. There are several types of bleeding disorders. The most
recognized bleeding disorder is hemophilia, a predominantly male
disorder affecting approximately 20,000 individuals in the United
States. The most common bleeding disorder is von Willebrand disease,
which affects between one to two percent of the U.S. population.
Thrombophilia, a blood clotting disorder effecting 2 million people
each year, puts both men and women at risk of developing dangerous
blood clotting in veins and arteries. These clots can obstruct the
blood flow through the vessels causing pain and swelling of the tissue
in the area and can lead to permanent tissue damage as well as death.
PREVENTION AND TREATMENT
Centers for Disease Control and Prevention
The national network of hemophilia treatment centers (HTCs) created
by Congress in 1974 remains essential to ensuring that comprehensive
and specialized care is available for persons with bleeding and
clotting disorders. The HTC role has expanded dramatically over the
last three decades, evolving with the needs of the hemophilia and
bleeding disorders community to provide coordinated care, blood safety
surveillance, prevention, and improved disease management. This
expansion also has included outreach and treatment for women with
bleeding disorders and persons with thrombophilia.
These programs, carried out by the Hereditary Blood Disorders
Program in the National Center for Birth Defects and Developmental
Disabilities at the Centers for Disease Control and Prevention (CDC),
have demonstrated significant reductions in mortality and morbidity.
More than 75 percent of the hemophilia community participates in one of
the 140 centers that comprise the HTC network and more than 10,000
women receive care at a HTC. Despite this dramatic growth in support
and services, HTC funding has not increased in the last 10 years.
Support for an increase has been identified in Congress, and
Congressman Tom Price (R-GA) and many of his colleagues have sponsored
a letter of support encouraging the Committee to allocate an additional
$7 million for HTC funding. NHF urges the Committee's strong support
for this additional funding to ensure HTCs can carry out needed
education, prevention, blood safety, surveillance, and outreach
programs with the bleeding and clotting disorders community.
Health Resources and Services Administration
HTCs also receive needed funding as a special project of regional
and national significance within the Maternal and Child Health Bureau
(MCHB) Block Grant set-aside. MCHB funds are utilized by HTCs to cover
the non-reimbursable costs of providing on-going nursing, prevention,
dental, and rehabilitative services and support. MCHB funding for HTCs
has remained steady for the past 20 years, resulting in eroded
resources over time. MCHB funds for the HTC disease management network
are essential to meeting the needs of the bleeding and clotting
disorders community. NHF urges the Committee to maintain funding
support for the HTCs through MCHB.
HEMOPHILIA RESEARCH
Bleeding and Clotting Disorders Research
NHF is appreciative of the Committee's continued commitment to
research. The strengthened research funding provided by the Committee
to the National Institutes of Health has brought about rapid advances
in science. Within NIH, the National Heart, Lung, and Blood Institute
(NHLBI) has taken the lead on advancing research on bleeding and
clotting disorders and the complications of these disorders. NHF is
particularly appreciative of NHLBI's collaborative research program
with the Foundation to support research on improved and novel therapies
for treating these disorders and, like the Institute, has been
overwhelmed by the scientific community's positive response to this
approach. NHF encourages the Committee to increase its funding support
for NHLBI such that valuable initiatives like the collaborative
research program can be sustained.
Hepatitis C Virus
HCV continues to severely impact the hemophilia and bleeding
disorders community. As a result of their dependence on blood-based
products, the hemophilia and bleeding disorders community has been
severely affected by HIV and hepatitis. More than 80 percent of people
with hemophilia born before 1992 have the Hepatitis C Virus (HCV).
Today, nearly half of all persons with hemophilia have HCV. NHF has
been grateful for the support of the Committee in encouraging continued
partnerships between NHF and the National Institute of Allergy and
Infectious Disease (NIAID) to address the importance of developing and
advancing research initiatives for addressing HCV within the bleeding
disorders community. NHF requests that NIAID continue to work with the
Foundation's medical and scientific leadership and develop a report by
March 31, 2006 on HCV research strategies that are being pursued within
the bleeding disorders community.
Over the last 20 years, the National Cancer Institute (NCI) has
collected samples from patients with hemophilia infected with HIV and
HCV through the Multi-Center Hemophilia Cohort Study. This cohort
offers a rich database for improving the understanding of HCV and has
served as the basis of significant peer reviewed findings. NHF
understands that NCI has decided to no longer fund further research
studies of the cohort. NHF requests the Committee's support in urging
NCI to ensure the samples obtained through this cohort are preserved
and accessible for future research. NHF also requests a report on
possible future research opportunities provided by the cohort samples.
The National Institute of Diabetes and Digestive and Kidney
Diseases (NIDDK) has played a significant role in advancing and
coordinating NIH's HCV research activities. With the high incidence of
HCV within the bleeding disorders community, it is critical to further
investigate and understand treatment options and advancements. NHF
urges the Committee's support for NHF to work with NIDDK in developing
and advancing research initiatives to address HCV within the bleeding
disorders community.
RECOMMENDATIONS
We are grateful for the Committee's support of bleeding and
clotting disorders research, prevention, treatment, and outreach
initiatives. For fiscal year 2006, we urge the Committee to:
--Strengthen funding support for hemophilia and bleeding and clotting
disorders prevention and treatment programs by providing an
additional $7 million for the HTC network through CDC's
Hereditary Blood Disorders Program.
--Provide continued support for the HTC network through MCHB.
--Maintain support at NHLBI for research on improved and novel
therapies for bleeding and clotting disorders.
--Provide support for continued collaboration between NHF and NIAID
in developing and advancing research initiatives for addressing
HCV within the bleeding disorders community.
--Preserve NCI samples obtained through the Multi-Center Hemophilia
Cohort Study and ensure their accessibility for future research
initiatives.
--Provide support for NIDDK to work with NHF in addressing HCV within
the bleeding disorders community.
Thank you for the opportunity to provide this statement to the
Committee.
______
Prepared Statement of the National Multiple Sclerosis Society
Mr. Chairman and distinguished members of the Subcommittee, we
appreciate the opportunity to submit written testimony on behalf of the
National Multiple Sclerosis Society. The Society was founded in 1946.
Since its inception, the Society's highest priority has been to support
research aimed at finding the cause of MS, better treatments, and a
cure. In 2005, the National MS Society will spend over $35 million on
MS research supporting over 350 MS investigations. By the end of 2005,
the Society cumulatively will have expended some $460 million since
awarding its first three grants in 1947. This represents the largest
privately funded program of basic, clinical, and applied research and
training related to MS in the world.
The federal government must continue its vital role in furthering
the scientific understanding of MS. To this end, the Society supports
the following:
--That the National Institutes of Health (NIH), in partnership with
the Society, invest additional funds to identify and
characterize MS susceptibility genes and bring additional
research focus to the primary progressive form of MS.
--That NIH, in collaboration with the Society, other MS
organizations, and other federal research agencies, undertake a
study of the incidence, demographics and environmental factors
that may contribute to disease onset.
--The National Institute on Disability and Rehabilitation Research
(NIDRR) in the Department of Education fund one additional
Medical Rehabilitation Research and Training Center for MS and
take steps to stimulate individual research projects.
--That Congress increase fiscal year 2006 NIH funding by 6 percent.
Multiple sclerosis is a chronic, unpredictable and often disabling
disease of the central nervous system. Symptoms range from numbness in
the limbs, to loss of vision, memory deficits, and in some instances
partial or total paralysis. The progress, severity and specific
symptoms of MS in any one person can vary and cannot yet be predicted,
but advances in research and treatment are giving hope to those
affected by the disease.
The federal investment in the National Institutes of Health (NIH)
and the National Institute on Disability and Rehabilitation Research
(NIDRR) plays a major role in MS research. At the NIH, there are two
institutes that conduct or fund the majority of MS research: the
National Institute of Neurological Disorders and Stroke (NINDS) which
funds 75 percent, and the National Institute of Allergy and Infectious
Diseases (NIAID) which funds about 20 percent. The National Center for
Medical Rehabilitation Research (NCMRR--a unit of the National
Institute of Child Health and Human Development) also funds a small
amount of MS research specifically targeting rehabilitation issues. In
addition to the NIH, the NIDRR through the Department of Education
invests in MS research.
For fiscal year 2005 and fiscal year 2006, it is estimated that NIH
expenditures on MS research will be approximately $102 and 103 million,
respectively. For fiscal year 2005 and fiscal year 2006 NIDRR
expenditures on MS research will be approximately $1.5 million per year
out of a total budget of $140 million per year. While this demonstrates
one measure of the federal investment in MS research, this amount pales
in comparison with the annual direct and indirect disease cost--
approximately $23 billion for all people with MS in the United
States.\1\
---------------------------------------------------------------------------
\1\ Based on a 1994 Duke University study, indexed for 2004 by the
National MS Society, the average annual cost of MS is estimated at
$57,500 per person due to lost wages, increased medical care and other
expenses. Nationwide, there are an estimated 400,000 people with MS.
---------------------------------------------------------------------------
The National MS Society has had a long and productive relationship
with the NIH, particularly with NINDS. Our founder Sylvia Lawry helped
spearhead the legislation that established NINDS in 1950. The Society
has been pleased to work with the NINDS on many areas of mutual
interest and we hope to strengthen our partnership with NINDS and
expand our relationships with other federal funders of MS research in
the coming year.
The Society supports the NIH Neuroscience Blueprint, announced last
Fall, that reinforces intra-collaboration and information-sharing among
14 NIH Institutes that conduct or support research on the brain and
nervous system. The Blueprint should accelerate the translation of
basic neuroscience discoveries into better ways to treat and prevent
nervous system disease.
INVESTING IN RESEARCH PRIORITIES RELEVANT TO MS
The National MS Society will continue to pursue research
opportunities with NIH and NIDRR in priority areas that are key to
furthering the understanding of MS. We continue to monitor NIH's
progress in expanding its commitment to MS research as suggested by
Congress.
In 2004, as part of our NIH advocacy efforts, the Society had the
following congressional ``report language'' added by the House and
Senate Appropriations Conference Committee as an instruction to NIH in
the fiscal year 2004 omnibus appropriations package:
``The conferees urge NINDS to increase its overall investment in
multiple sclerosis (MS) research. Special emphasis on imaging,
biological markers and clinical trials for new therapeutics should be
areas of high priority. The conferees are pleased to note the
development of a joint symposium on MS genetics sponsored by NINDS and
the National MS Society, and encourage the Institute to take a more
active role at the NIH in furthering MS genetics research by developing
collaborative strategies with the National Human Genome Research
Institute and other relevant NIH institutes. The conferees request that
NIH report back to Congress no later than September 30, 2004 with
progress in its efforts to expand its commitment to multiple sclerosis.
The conferees also are pleased to note a major success in past years in
the creation of a joint collaborative research program in ``gender and
immunity'' between the National Institute on Allergy and Infectious
Diseases (NIAID) and a major voluntary association for the disease, in
which NINDS participates. The conferees encourage NINDS to seek similar
collaborative activities related to MS.''
The Society was pleased to receive a copy of the report. While the
Society is gratified by the many intramural and extramural activities
and progress described in the report, we are disappointed to note that
it did not address steps that NINDS would take to expand its commitment
MS research as requested by the committee. We urge NINDS to increase
its commitment to MS by:
--Partnering with the Society to invest additional resources to help
solve the genetic basis of MS.
--Working with the Society to bring additional research focus to the
primary progressive form of MS (PPMS).
Family studies of people with MS and their relatives, have shown
that the risk for MS depends on relatedness to the affected individual,
that is, a sibling has a higher risk of developing MS than a cousin. In
no other disease have recurrence risks been so comprehensively
catalogued in groups of biological and social relatives. A strategy is
needed to penetrate the genetics of MS. Although the NIH and the
National MS Society have invested independently substantial funds in MS
genetics over the past decade, this is an area that calls for
additional collaboration. The past few years have seen real progress in
the development of laboratory and analytical approaches to the study of
genetic disorders. The Society encourages the NIH to move forward with
the Society as a true partner in identifying those DNA regions that can
be prioritized for encoding MS susceptibility genes. The identification
and characterization of the MS genes will help to define the basic
etiology of the disease, to help predict the course of the disease, and
to influence therapeutics.
Advances in immunology have provided clinicians with powerful tools
to better understand the underlying causes of MS, leading to new
therapeutic advances. Although there are FDA-approved treatments for
relapsing MS, there are no approved treatments for progressive MS. The
primary progressive form of MS (PPMS) is characterized from the onset
by the absence of acute attacks and instead involves a gradual clinical
decline. Approximately 10 percent of individuals are diagnosed with
PPMS from the onset. Clinically this form of the disease is associated
with a lack of response to any form of immunotherapy. This leads to the
concept that PPMS may in fact be a very different disease as compared
to relapsing remitting MS. The Society identifies the study of
progressive MS as an area that merits greater attention by the research
community in order to increase our understanding of PPMS and to have
effective therapies for this progressive form of the disease. In the
upcoming year, the Society encourages NIH to help the Society address
this underserved area of MS research.
In addition to efforts at the NIH, the Society is pleased to note
that for more than 20 years, NIDRR has funded a Medical Rehabilitation
Research and Training Center (MRRTC) for MS. However, the institute's
overall investment in MS research remains limited, $1.5 million in
fiscal year 2005. The NIDRR portfolio includes only two current
projects related to MS, the aforementioned MRRTC and a Rehabilitation
Research and Training Center on Health and Wellness in Long Term
Disability that is only partially focused on MS. In contrast, spinal
cord injury, with a prevalence less than that of MS, has 39. Since the
advent of FDA-approved MS disease-modifying treatments in 1993, persons
with MS have had access to therapeutics which can slow the progression
of disability. However, in order to maintain maximum levels of
independence, persons with MS need rehabilitation to address residual
deficits. Unfortunately, due to the limited support for MS
rehabilitation research, we know relatively little about the efficacy
of rehabilitative interventions in MS. We therefore urge the NIDRR to
increase its support for MS rehabilitation research through the funding
of at least one additional MRRTC along with initiatives to stimulate
individual research projects.
THE IMPORTANCE OF COLLABORATION
The National MS Society cannot overemphasize the importance of
collaboration. We are pleased to see that the Roadmap Initiative--a 3-
year plan addressing key research issues throughout NIH--continues to
develop. The National MS Society encourages NIH to continue its efforts
to increase collaboration across institutes and to pursue collaborative
opportunities with other organizations. As we see it, there is no other
choice.
An area in critical need of attention concerns data related to the
incidence, prevalence, and distribution of MS. The last national study
of incidence and prevalence of MS in the United States took place more
than 30 years ago. Since that time the population of the United States
has changed dramatically in size, composition, and distribution.
Moreover, numerous questions have arisen concerning possible ethnic,
geographic, and local variations in the distribution of MS. Knowledge
concerning these distributions and possible causal factors may provide
important information concerning the nature of MS and its triggers.
Moreover, rational policy formulation for MS health care requires up-
to-date information concerning numbers and characteristics of persons
with MS down to the state level. Addressing these information needs is
beyond the resources of the Society. We therefore urge the NIH, the
CDC/ATSDR to work with the Society and perhaps other MS organizations
such as the Consortium of MS centers, to begin the task of
understanding how many Americans have MS, where they reside, and what
environmental factors may have contributed to disease onset.
To date, the Society has been successful with NIH on jointly
funding a major initiative on gender and immune function. In 2001, the
Society entered into a $20 million collaborative project with NIAID and
other NIH institutes to investigate gender effects on the immune
function, including autoimmunity. This is important because most
autoimmune diseases (including MS) are far more prevalent in women than
men. The Society is co-funding six projects and will contribute up to
$4 million to this project. We would like to engage in other
collaborative projects, especially with NINDS.
The Society also was pleased that in 2004 NINDS and NMSS co-
sponsored a scientific workshop on biomarkers in MS. As outcomes from
this workshop, the Society is looking to work closely with NINDS
projects, such as the development of collaborative and international
efforts to identify biomarkers for MS. Such efforts would significantly
advance our efforts to effectively diagnose and treat MS.
The Society was also pleased that in 2004 NINDS and NMSS co-
sponsored a scientific workshop on design of clinical trials in MS. The
tremendous increase in potential therapies for MS has created new
challenges in the design and execution of new MS therapies. The Society
was pleased that an outcome of this workshop was an effort to draft a
white paper for the Food and Drug Administration on the topic of use of
magnetic resonance imaging (MRI) as a surrogate measure in MS clinical
trials. Acceptance of MRI as a valid surrogate measure by the FDA would
represent a significant step forward in testing the potential MS
therapies and bringing them to approval in a more expeditious manner.
The Society is also currently collaborating with the National
Center for Medical Rehabilitation Research (NCMRR--a unit of the
National Institute of Child Health and Human Development) on an
international workshop to foster rehabilitation research in MS. This
workshop will address the critical need to expand the quality and
quantity of MS rehabilitation research. It is hoped that from this
workshop may emerge opportunities for collaborative support of research
initiatives to advance scientific knowledge concerning MS
rehabilitation.
OVERALL NIH FUNDING INCREASE FOR FISCAL YEAR 2006
The Society is concerned that NIH may face a third year of overall
low funding increases. Furthermore, in fiscal year 2004 and fiscal year
2005, only bioterrorism research received a healthy increase, with much
smaller increases allocated for disease research. We fear the same may
occur in fiscal year 2006. This is particularly disappointing after the
fiscal year 1999-2003 funding campaign that doubled the NIH budget in
the 5-year period.
--We urge Congress to appropriate a 6 percent fiscal year 2005
funding increase for NIH.
--While there is a need to increase our country's investment in
bioterrorism research, we ask Congress to balance the fiscal
year 2006 NIH appropriation to allow growth across all NIH
institutes and all areas of disease research.
We thank the Subcommittee for this opportunity to comment and
applaud your commitment to advancing the health and well-being of all
Americans through investment in biomedical research.
______
Prepared Statement of the NephCure Foundation
SUMMARY OF RECOMMENDATIONS FOR FISCAL YEAR 2006
1. A 6 percent increase for the National Institutes of Health and
the National Institute of Diabetes and Digestive and Kidney Diseases
(NIDDK).
2. Continue to expand the NIDDK Nephrotic Syndrome (NS)/Focal
Segmental Glomerulosclerosis (FSGS) research portfolio by aggressively
supporting grant proposals in this area and encouraging the National
Center for Minority Health and Health Disparities (NCMHD) to initiate
studies into the incidence/cause of NS/FSGS in the African-American
population.
3. The NephCure Foundation encourages we encourage follow up to the
scientific workshop that took place in January, 2005, sponsored by
NIDDK, in effort to initiate grant proposals focused on achieving the
goals developed by the workshop. The workshop examined observations and
opportunities for improved diagnosis and therapeutic interventions for
Glomerular disease and Focal Segmental Glomerulosclerosis (FSGS).
Mr. Chairman, and members of the subcommittee, I am pleased to
present testimony on behalf of the NephCure Foundation (NCF), a non-
profit organization driven by a blue-ribbon panel of respected medical
experts and a dedicated band of patients and families working for a
common goal--to save kidneys and lives.
I am Ed Hearn, former Major League catcher for the 1986 World
Series Champion New York Mets and the Kansas City Royals. My career as
a professional athlete came to an abrupt end in 1991, due to a shoulder
injury. Upon recuperation, I intended to return to my team. While I was
out due to my injury, I began to experience symptoms that indicated
kidney malfunction, and within six months, I was diagnosed with Focal
Segmental Glomerulosclerosis (FSGS), a debilitating and degenerative
kidney disease. Today, after three kidney transplants, the aid of a
breathing machine at night, a $3,000 IV once a month, and $40,000 of
medication to pay for up to 50 pills that I must swallow each day, I
live to tell my story and to speak for those suffering from FSGS. My
hope is that we can find the means to prevent this life-threatening
disease from affecting our youth and from jeopardizing the normalcy of
their lives as it has mine and many others. I remain hopeful that a
cure for FSGS will be uncovered, but until then, our focus must be on
prevention.
TREATMENT TRIALS BEGINNING, BUT NO CURE IN SIGHT
Mr. Chairman, FSGS is one of a cluster of glomerular diseases that
attack the one million tiny filtering units contained in each human
kidney. These filters are called nephrons and these diseases attack the
portion of the nephron called the glomerulus, scarring and often
destroying the irreplaceable filters. Scientists do not know why
glomerular injury occurs and they are not sure how to stop its
inevitable destruction of the kidney.
When I was a teenager, doctors found protein in my urine and told
me that some day I might have kidney trouble. I pushed it out of my
mind, thinking that some day meant when I was an old man down the road.
Some day came faster than anyone expected. I believe that because I was
a highly conditioned athlete, and catchers are more conditioned than
most athletes, my body initially masked the symptoms of FSGS.
Consequently, I retained the facde of physical health, and I do not
know when FSGS initially began to internally attack my body.
My first kidney transplant lasted more than seven years until the
FSGS returned, as it often does. I received a second kidney from my
aunt in 2000, but my body rejected it almost immediately, and I
received a third kidney transplant in May of 2002. My story is not
unique; there are thousands of other people in this country who have
had their lives disrupted due to the sudden onset of FSGS. Although
kidney transplants have been very successful for thousands of FSGS
patients, there are many patients of whom the body rejects the
transplanted kidney or the FSGS comes back and attacks the transplanted
kidney, leaving the patient with no functioning kidneys. He or she must
then rely on daily dialysis as a means of survival.
FSGS patients are often on several medications, which cause medical
complications and unbearable side effects. FSGS patients, upon
diagnosis, often take a downward plunge at a rapid rate, and it is
extremely difficult to make a comeback. In the last four years, I have
undergone two kidney transplants, two years of dialysis, and a six week
course of daily radiation treatment for rapidly spreading cancer that
was primarily the result of the high doses of immunosuppressant drugs I
am taking for FSGS. In the last three months alone, I have had over 65
medical appointments. As you can see, it is nearly impossible for an
FSGS patient to live a normal life.
We are extremely thankful that an NIDDK-funded clinical trial began
last year to study the efficacy of the current treatments for FSGS, and
that ancillary studies are underway to examine tissue samples of
injured glomerulus. However, these clinical trials hold no particular
hope for patients who suffer from FSGS.
There are thousands of young people who are in a race against time,
hoping for a treatment that will save their lives. The NephCure
Foundation today raises its voice to speak for them all, asking you to
take specific actions that will aid our quest to find the cause and the
cure of NS/FSGS.
First and foremost, we support a 10 percent increase for the
National Institutes of Health and the National Institute of Diabetes
and Digestive and Kidney Diseases (NIDDK).
TOO LITTLE DATA ABOUT A GROWING PROBLEM
When glomerular disease strikes, the resulting Nephrotic Syndrome
causes loss of protein in the urine and symptoms such as edema, a
swelling that often appears first in the face. For example, many
physicians mistake children's puffy eyelids as an allergy symptom.
Stories of similar misdiagnoses are common at our Foundation. With
experts projecting a substantial increase in Nephrotic Syndrome in the
coming years, there is a clear need to educate pediatricians and family
physicians about glomerular disease and its symptoms.
The NephCure Foundation has numerous education programs underway,
including patient education seminars; the most recent of which took
place in March 2004. The next patient education seminar will take place
in Washington, DC in May 2005. News of our most recent activities can
be found on our web site at www.nephcure.org. However, our efforts
alone are not enough.
NIDDK launched a major federal outreach program early in 2002--the
National Kidney Disease Education Program--we seek your support in
urging NIDDK to assure that glomerular disease receives high visibility
in this important program.
GLOMERULAR DISEASE STRIKES MINORITY POPULATIONS
Nephrologists tell us that glomerular diseases such as FSGS affect
a disproportionate number of African-Americans and, according to NIDDK,
``the worst prognosis is observed in African-American children.''
NephCure officials have described this situation in a meeting with Dr.
John Ruffin, director of the National Center for Minority Health and
Health Disparities (NCMHD).
As the NCMHD becomes fully operational and plans programs, our
Foundation will continue to work with the Center to encourage the
creation of programs to study the high incidence of glomerular disease
within the African-American population.
We ask the Committee to join with us in expanding the NS/FSGS
research portfolio by requesting that the National Center for Minority
Health and Health Disparities seize the opportunity to establish
research into the phenomenon of glomerular disease within the African
American community.
MORE BASIC SCIENCE IS NEEDED
The current FSGS clinical trials which follow an estimated 400
patients over a three year period, are limited, according to the RFA,
to examining the ``impact of immunomodulatory therapy on proteinuria.''
While the trials may lead to safer or more efficient care for children
with FSGS, no one is suggesting that they will bring us closer to
finding the cause and cure. Science has yet to prove that FSGS is an
immune-mediated disease.
Scientists tell us that much more needs to be done in the area of
basic science, beginning with collection of tissue and fluid samples
from a large number of patients on which years of important scientific
research can be founded. NephCure is collaborating with the NIH in a
major way to work for such progress.
The National Institute of Diabetes and Digestive and Kidney
Diseases (NIDDK) has agreed to match, dollar-for-dollar, funds raised
by NephCure that will allow researchers to obtain DNA samples from
hundreds of FSGS patients in upcoming clinical trials. The NIDDK will
match up to $300,000 raised by NephCure for a combined total of
$600,000. These trials are an ancillary study in conjunction with the
first-ever national medication trials of FSGS treatment that may
possibly lead to better understanding of the more common Nephrotic
Syndrome, which can be a precursor to FSGS.
We encourage follow up to the Scientific Workshop that took place
in January, 2005, sponsored by NIDDK, in effort to initiate grant
proposals focused on achieving the goals developed by the workshop. The
workshop examined observations and opportunities for improved diagnosis
and therapeutic interventions for glomerular disease and Focal
Segmental Glomerulosclerosis (FSGS). This goal is consistent with the
NIH Roadmap to Research initiative developed by NIH Director, Dr. Elias
Zerhouni.
The workshop united basic science and clinical investigators, FSGS
patients, physician researchers, nephrologists from around the world
and anyone with an interest in treatment for glomerular diseases to
share and collaborate upon advances, challenges and research potential
of these debilitating diseases. We must use the conference as a
stepping stone and build upon the information collectively gathered to
determine the resources needed to carry out these opportunities and
challenges. The workshop/conference gave hope to the thousands of young
people whose kidneys and lives are threatened by this terrible disease,
and it gave honor to their heroic stories.
We anticipate the potential for a Program Announcement and the
potential for a Special Emphasis Program Announcement resulting from
the conference or some other traditional mechanism to generate grant
proposals. These mechanisms to encourage investigator initiated grant
proposals should help to continue to expand the NS/FSGS portfolio at
NIH.
Mr. Chairman, as you know, patient support and advocacy groups such
as the NephCure Foundation work closely with medical research
organizations. They share a mutual understanding that unless major
research efforts are undertaken, advances and improvements in the
health of patients will not occur. Every year, the NephCure Foundation
participates in advocating increased funding for the NIH and NIDDK. We
want to reiterate how deeply grateful we are for your leadership and
that of the subcommittee on medical research matters, which means so
much for the health of the people in our nation.
I will be pleased to answer any questions you may have.
______
Prepared Statement of the National Prostate Cancer Coalition
Mr. Chairman and members of the Committee, thank you for the
opportunity to share my remarks. The National Prostate Cancer Coalition
(NPCC) was founded in 1996 to combat a long overlooked killer of men. I
came to NPCC in 2001, having just recently been impacted by the disease
myself. In 2000, my grandfather was diagnosed with prostate cancer.
Having served his country so valiantly in World War II, he was now
facing a new battle. Luckily, because of early detection through the
prostate specific antigen (PSA) test and the digital rectal exam (DRE),
the disease was caught early and, following a radical prostatectomy, he
is now cancer free. But there are many men who are not so lucky. That's
why you must adequately fund prostate cancer research for veterans like
my grandfather, families like mine, and men all over America.
Under the leadership of this committee we have seen prostate cancer
research funding increase by nearly $300 million since in the last 6
years. While we have come a long way, there is still much work to be
done. For the second year since the founding of NPCC, prostate cancer
deaths will continue to increase in 2005. More than 30,000 lives will
be lost to the disease. Occurrences of prostate cancer are increasing
as well, to over 230,000 men this year. While cases continue to grow,
more men are catching the disease in its early stages, when the disease
is most treatable, by early detection through screening.
NPCC would like to offer its gratitude on behalf of the 2 million
American men with prostate cancer for the support this committee has
offered in the past. The recent doubling of the National Institutes of
Health's (NIH) budget has helped prostate cancer research funding to
expand to record levels, but we must ensure this funding is used
appropriately. To that end, your committee was instrumental in
requiring NIH and the National Cancer Institute (NCI) to submit a
professional judgment budget for fiscal year 2003-fiscal year 2008 to
outline the agencies' plans for prostate cancer research. You have also
been influential in requesting a fiscal budget for that document, which
was Congress received passed the April 2004 deadline. The budget
requested lacked connectivity to the previous plan and made no
references to goals or priorities. While no one disputes the historic
importance of doubling, we ask you to encourage NIH and NCI to
coordinate with each agency to put forward a comprehensive and cohesive
plan that brings us closer to eradicating cancer. Additionally, we
respectfully request your oversight to ensure this funding is producing
results for prostate cancer.
Huge sums of taxpayers' money have been allocated to NIH over the
years and it is now time to examine what this windfall has produced.
Therefore, we request that you to ensure that NIH to submits the yearly
update on its prostate cancer research portfolio that reflects its
progress according to the fiscal year 2003-fiscal year 2008
professional judgment budget that was requested in fiscal year 2005.
We are entering an exciting time in biomedical research. The recent
Food and Drug Administration's approval of Avastin has opened a new
door for cancer research. Avastin targets cancerous cells by blocking
their blood supply, an idea that had been previously dismissed by the
medical community as ``absurd''. The drug not only signals a turning
point in changing cancer into a manageable, chronic disease but also
demonstrates the value of seeking out novel and innovative research. We
must encourage this kind of research at NIH, including assessing the
value of stem cell research which has shown promise in research for
neurological diseases, diabetes, and cancer.
Developing a new approach to research is a priority for NPCC. The
Prostate Cancer Research Funders Conference, first convened in 2001 and
then revitalized last fall, seeks to formulate a collaborative, public-
private approach to seek out new ways of attacking the problem of
prostate cancer. Originally co-convened by NPCC and NCI, participants
now also include the Department of Defense, the Veterans Health
Administration, the Centers for Disease Control and Prevention, the
Food and Drug Administration, Canadian and British government agencies,
private foundations/organizations and representatives from industry.
Members of the Conference have come together to form a partnership that
allows them to focus on key objectives and to address commonly
recognized barriers in research. This could propel research forward
significantly. As the Conference continues, we ask that the Committee
make its functionality part of its oversight commitments to prostate
cancer research. Currently, federal agencies participate voluntarily,
but they can opt in or out based on the tenure of executive leadership
and its time-limited decisions. For the conference to be successful
federal agencies engaged in the prostate cancer research should, in our
opinion, be required to participate, and we ask for your leadership to
make that happen.
Recognizing the importance of cutting edge research initiatives and
collaborative research efforts, NIH director Elias Zerhouni, M.D.
recently unveiled the NIH Roadmap. The Roadmap's strategy mirrors that
of the Funders Conference, specifically by seeking out new approaches
and ideas and stimulating cross-institutional and cross-center research
for all NIH driven biomedical research. Believing, we think correctly,
that the synergies in the Roadmap can achieve outcomes that are greater
than those any one Institute or Center can achieve, we support its
efforts to advance key biomedical research initiatives at an
exponential rate. NPCC applauds the Roadmap and pledges its support to
take biomedical research in new directions.
As NIH and NCI look to redefine and increase the efficiencies of
their research programs, Congress must equip them with the resources
they need to implement new initiatives. Unprecedented increases in NIH
and NCI's funding over the last 6 years have created opportunities
never before available. We must take advantage of these achievements,
to not do so will not only harm cancer patients everywhere but is,
quite simply, poor business sense.
NPCC was heartened when the President stated 2 years ago that ``in
order to win the war against cancer, we must fund the war against
cancer,'' but we are very concerned by recent reports suggesting the
Administration's budget for fiscal year 2006 will propose a cut in the
overall budget of the National Institutes of Health and other critical
programs. Such a cut would be a major reversal in our nation's
commitment to the fight against cancer.
Societies for Experimental Biology (FASEB) have stated if increases
are held to 2 percent-3 percent the grant funding rate at NIH will drop
below 30 percent and approximately 500 fewer grants would be funded. To
allow NIH and NCI to adequately continue to fund promising grants and
research first realized during the budget doubling, Congress must
appropriate at least ($30.1 billion) in funding for these agencies in
fiscal year 2006. That may seem like a large number, but in reality, it
is only a small fraction of the estimated $189 billion that cancer
alone costs this nation yearly.
Increasing NIH's budget by 8.5 percent would also allow NCI to
dedicate more than $400 million to prostate cancer research in fiscal
year 2005. Last year, NCI received only a 3.3 percent increase in
funding over the previous year's level. Yet, with previously committed
grant awards and outlays to the NIH Roadmap, NCI is ``effectively
operating with a budget that is $2.7 million less than last year's
operating budget (NCI Cancer Bulletin 2/3/04).'' The President's fiscal
year 2006 budget allocates over $4.8 billion to NCI, is much less than
the fiscal year 2005 increase. This level will mean even tougher
choices in awarding grants at NCI. We believe that Congress should
fully fund the NCI Director's Bypass Budget at $6.2 billion, which
would rapidly accelerate the nations' fight against all cancers.
As you know, education and early detection through screening are
the catalyst to beating prostate cancer. Right now, the PSA blood test
and DRE physical exam are the best measures for detecting prostate
cancer early. We ask the Committee to allocate at least $20 million to
the Center for Disease Control and Prevention's (CDC) prostate cancer
awareness program. We also encourage the Committee to work with CDC to
address our concern that the agency places insufficient value on these
screening tools.
Thank you again for the leadership you have shown in advancing
biomedical and, more specifically, prostate cancer research. Under your
leadership, the nation's war on cancer has reached heights never before
realized. We look forward to continuing to work with you and the
members of the Committee until a cure is found.
______
Prepared Statement of the National Sleep Foundation
SUMMARY OF FISCAL YEAR 2006 RECOMMENDATIONS
--Provide a 6 percent increase for fiscal year 2006 to the National
Institutes of Health (NIH) and a proportional increase of 6
percent to the individual institutes and centers, specifically,
the National Heart, Lung, and Blood Institute (NHLBI).
--Urge the National Center on Sleep Disorders Research (NCSDR) to
partner with other federal agencies, such as the Centers for
Disease Control and Prevention (CDC), and voluntary health
organizations, such as the National Sleep Foundation (NSF), to
develop a collaborative sleep education and public awareness
initiative.
--Urge the United States Surgeon General to issue a Surgeon General's
Report on Sleep and Sleep Disorders.
Mr. Chairman and members of the Subcommittee, thank you for
allowing me to present testimony on behalf of the National Sleep
Foundation or NSF. I am Dr. James Walsh, Chairman of the Board of
Directors of the National Sleep Foundation, Executive Director of the
Sleep Medicine and Research Center affiliated with St. John's Mercy and
St. Luke's Hospitals, and Clinical Professor of Psychiatry at St. Louis
University. The National Sleep Foundation is an independent, non-profit
organization whose mission is to enhance public awareness about the
need for sufficient restorative sleep, to increase the detection and
treatment of sleep disorders, to foster sleep-related programs and
policy for the betterment of public health, and to promote sleep
research. We work with thousands of sleep medicine and other health
care professionals, researchers, patients, drowsy driving victims
throughout the country, and collaborate with many government and
private organizations with the goal of preventing health and safety
problems related to sleep deprivation and untreated sleep disorders.
Sleep problems, whether in the form of medical disorders, or
related to work schedules and a 24/7 lifestyle, are ubiquitous in our
society. At least 40 million Americans suffer from sleep disorders; yet
more than 60 percent of adults have never been asked about the quality
of their sleep by a physician, and fewer than 20 percent have ever
initiated such a discussion. Millions of individuals struggle to stay
alert at school, on the job, and on the road. The latest estimates from
the National Highway Transportation Safety Administration and the
Federal Motor Carriers Safety Administration implicate fatigue and
sleepiness in 1.1 million crashes annually. A recent study in Sweden
showed that sleep disturbances are the second greatest risk factor for
fatal accidents at work. Sleep apnea, a sleep-related breathing
disorder which affects at least 5 percent of adult Americans, is
closely related to some of America's most pressing health problems,
such as obesity, hypertension, heart failure, and diabetes. Chronic
insomnia, experienced by 10 percent of our population is a strong risk
factor for depression and other widespread mental health conditions.
Sleep disorders, sleep deprivation, and excessive daytime sleepiness
add approximately $15 billion to our national health care bill each
year. The National Center on Sleep Disorders Research estimates that by
the year 2050, sleep problems will affect as many as 100 million
Americans.
Sleep science has clearly demonstrated the importance of sleep to
health and well being, yet research studies continue to show that
millions of Americans are at risk for the serious health, safety
consequences of sleep disorders and inadequate sleep. Moreover their
quality of life suffers and the personal and national economic impact
is staggering. NSF believes that every American needs to understand
that good health includes healthy sleep, just as it includes regular
exercise and balanced nutrition. We must elevate sleep to the top of
the national health agenda. We need your help to make this happen.
Our biggest challenge is bridging the gap between the outstanding
scientific advances we have seen in recent years and the level of
knowledge about sleep held by health care practitioners, educators,
employers, and the general public. This gap in knowledge is being
discussed as I present this testimony today, by hundreds of concerned
professionals. Yesterday and today, the National Center on Sleep
Disorders Research, the National Heart, Lung, and Blood Institute, and
the Trans-NIH Sleep Research Coordinating Committee are sponsoring a
translational conference entitled ``Frontiers of Knowledge in Sleep and
Sleep Disorders: Opportunities for Improving Health and Quality of
Life.'' This two-day program has assembled health care providers,
public health and education experts, policy makers, patient advocacy
organizations, sleep medicine specialists, and other stakeholders. It
is intended to address how information about sleep and sleep disorders
can translate into improvements in public health and safety using cost-
effective, comprehensive, and broadly-applied strategies for education,
societal change, and improved sleep-related health care.
This conference is an important step in translating research into
practice and into a broad-based public health message. The development
of a sleep education and public awareness initiative would serve as a
key legacy for the sleep translational conference and provide a forum
for dissemination of the outcomes of the sleep translational
conference. The National Sleep Foundation has been leading the way on
public education regarding sleep and sleep disorders since it was
founded in 1990. NSF and others have done a lot, but so much more needs
to be done in order to educate the public and actually change behavior.
Because resources are limited and the challenges great, we think
creative and new partnerships need to be created to address the issues
that are before us.
In the fiscal year 2005 appropriations bill, Congress recommended
that The National Center on Sleep Disorders Research partner with other
federal agencies, such as the Centers for Disease Control and
Prevention, and voluntary health organizations, such as NSF, to develop
an ongoing, inclusive mechanism for public and professional awareness
on sleep, sleep disorders, and the consequences of fatigue. Such a
collaboration between federal agencies and voluntary health
organizations will create an opportunity for dramatically improving
public health and safety as well as the quality of life for millions,
if not all, Americans. Beginning steps have been taken to establish
this collaboration, but continued support from the National Center on
Sleep Disorders Research and the Centers for Disease Control and
Prevention is critical.
Last year, at a National Institutes of Health sleep conference, the
U.S. Surgeon General reported on the profound impact that chronic sleep
loss and untreated sleep disorders have on all Americans. He emphasized
that dissemination of the existing body of medical knowledge and
implementation of expanded clinical practice guidelines regarding sleep
and sleep disorders are critically important.
Conferences and workshops held by the Surgeon General involve
educating the public, advocating for effective disease prevention and
health promotion programs and activities, and providing a highly
recognized symbol of national commitment to protecting and improving
the public's health.
We believe that it is time that the federal government helps
promote sleep as a public health concern through the development of a
Surgeon General's report on sleep and sleep disorders in order to call
attention to the importance of sleep and develop strategies to protect
and advance the health and safety of the nation.
Thank you again for the opportunity to present testimony to this
Subcommittee.
______
Prepared Statement of the NTM Info & Research, Inc.
SPECIFIC RECOMMENDATIONS
NTMIR requests an allocation in the budget to enable NIH, (NIAID &
NHLBI) to advance diagnostics and treatments for patients suffering
from pulmonary Nontuberculous Mycobacteria (NTM) disease.
NTMIR requests funds to facilitate and increase multi-centered
trials to advance the effectiveness of treatments and to develop new
treatments.
NTMIR recommends that CDC/NCHS engage in surveillance to better
understand the incidence of NTM disease and assess the level of
awareness within the medical community.
NTMIR supports the American Lung Association's request for an
increase of $77 million in funding to combat TB so that we avoid the
risk of a rise in incidence that complacency can yield.
NTMIR supports the request of the Ad Hoc Group for Medical Research
Funding for a $30 billion appropriation for NIH in fiscal 2006.
WHAT IS PULMONARY NONTUBERCULOUS MYCOBACTERIAL DISEASE (NTM)?
NTM is an infectious disease considered to be of environmental
origin as these bacteria are ubiquitous in the water and soil that
surround us. Although NTM is diagnosed by the same basic test used to
diagnose traditional tuberculosis (TB), it is significantly more
difficult to treat. NTM progressively diminishes lung capacity, with
all the attendant negative consequences in life.
Unfortunately, even though TB has a significantly high profile, NTM
does not because education and awareness have been lacking.
Furthermore, there is growing evidence that NTM is many times more
prevalent than TB in the United States. For example, the State of
Florida Infectious Disease Laboratory reports receiving over twice as
many specimens that are NTM positive for every one that is positive for
TB. Even more startling, the Agency for Health Care Administration for
Florida hospital patient discharges shows almost 9 times the number of
patients with the primary diagnosis of NTM versus those with TB.
Doctors in leading treating facilities are reporting that even
though NTM is not reportable, they are seeing more NTM patients than TB
patients. A current report from Toronto, Ontario indicates that the
prevalence may be six times higher than the older data we have in the
United States.
NTM is not limited to one strain and has certain strains that are
inherently resistant to drug therapy, and in all cases multiple drugs
are required on a lengthy to permanent basis. A significant number of
patients require short to long term intravenous medication and this is
a particular hardship for the elderly because Medicare does not cover
in-home therapy. Medicare recipients must be hospitalized one to three
times a week driving treatment costs significantly higher than in
alternate settings.
NTM INFO & RESEARCH (NTMIR)
NTMIR was founded through a partnership of concerned patients and
interested physicians who see increasing numbers of people affected by
this devastating disease. NTMIR was created to expand professional
awareness, diagnosis and treatment, facilitate research and provide
patient support. Our mission is a public/private partnership to advance
the science and the outcomes for countless patients with NTM disease.
NTMIR has already demonstrated a track record of success since it
commenced its activities just two years ago. These include, successful
implementation of the NTMInfo.com website and online support group,
patient education throughout the country through the replication of an
NTM information pamphlet, initiating professional education and Grand
Round lectures to increase professional education both for specialists
and family physicians, establishment of a partnership of cooperation
with public health in the State of Florida and with the American Lung
Association of Florida. Our most recent effort resulted in agreement
between a major pharmaceutical company, the FDA and a division of HRSA
to provide an urgently needed drug for patients who could not otherwise
obtain it, some of whom might have died without it.
We anticipate that these efforts will serve as models in other
states and at the federal level.
fern r. leitman, patient & director, ntm info & research, inc.
Fern Leitman is a patient who has severe pulmonary NTM disease that
has required ongoing medical therapy since 1996. Nonetheless, in
addition to serving as vice president of Philip Leitman, Inc. where she
is responsible for asset and acquisition evaluation, she is co-founder
of the NTM website and NTM Info & Research, Inc.
Since becoming ill, Fern has dedicated many hours each week to
communicating with patients from around the United States to help them
understand how they help themselves to battle NTM disease by being an
active participant in their own treatment and care. In spite of living
with devastating and chronic illness, Fern Leitman is committed to
helping others to live a full life by enhancing the role that NTM Info
& Research can play in bringing patients, physicians, and government
organizations to a partnership that will raise awareness and actively
pursue treatment options to improve the quality of life of those
suffering with NTM.
STATEMENT OF FERN LEITMAN
Thank you for the opportunity to submit a statement on behalf of
NTM Info & Research and all the patients suffering with pulmonary NTM
disease. NTM is an infectious disease that challenges treating
physicians. Lung transplantation is usually not an option because
immune suppressants complicate treatment.
Before NTM struck and caused me to be very ill, I was extremely
driven, highly competitive and very independent. I spent much of my
life in sales and was the first woman to sell cars in Florida. I was a
partner in a New York based garment manufacturing business and I
survived that without a scratch. I enjoy being extremely active but
life with nontuberculous mycobacterial disease (NTM) is really tough
and debilitating.
This disease has taken away my drive and endurance, one activity at
a time. It is insidious, frightening, and misunderstood. Many patients
have told us that they can no longer function because they are so short
of breath. Others can no longer work and many are hospitalized
repeatedly.
The symptoms and the tests to diagnose NTM are much like those for
TB. Unfortunately, it is much harder to treat. I am witness to the fact
that after almost nine years of drug therapy I am still not well and
have been told I will likely require lifelong drug therapy including IV
medicines.
Not enough is done because most doctors don't look for this
disease. When NTM infected my lungs, I coughed continuously and was
fatigued. I had a low-grade fever for years but never looked ill; I had
repeated bouts of pneumonia, coughed up blood, and it took 10 years for
a diagnosis. We hear the same story from other patients. Unfortunately,
it was too late to repair the damage because the middle portion of my
left lung was destroyed and there were areas where the tissue had been
destroyed throughout both lungs. Many others are suffering with NTM and
most don't even know it yet because, sadly, they haven't been
diagnosed. Please help them.
PHILIP LEITMAN, PRESIDENT, NTM INFO & RESEARCH, INC.
Philip Leitman co-founded NTM Info & Research when his wife Fern
became ill with severe pulmonary NTM disease. Fern and Philip began
meeting and hearing from numerous patients who were struggling with NTM
and had a lack of understanding about it. His personal commitment has
drawn the support of numerous physicians, the media, as well as
government and government organizations at various levels. Efforts that
began by developing the website, (NTMInfo.com) are now an established
not-for-profit seeking to enhance knowledge about NTM through
collaborative efforts with leading institutions, government, and
patients, as well as increased education to provide broader awareness
and understanding of the need for timely diagnosis and effective multi-
faceted treatments.
Mr. Leitman has an extensive background in business and
international business. He currently is a Regional Vice-Chair of the
Council of National Trustees of National Jewish Medical and Research
Center, President and co-founder of NTM Info & Research, Inc., Board
member of the American Lung Association of Florida, member of the
Florida TB Control Coalition, and a former Board member of Senior Care
and JVS Rehabilitation Sheltered Workshop.
Philip Leitman is also President and CEO of Philip Leitman, Inc. He
is active as a real estate developer in South Florida. He and his wife
Fern live in Pinecrest, Florida, and their children and grandchildren
live nearby.
STATEMENT OF PHILIP LEITMAN
Fern's doctors say she sets a standard for wanting to survive,
wanting to live, and wanting to function highly. I am proud to follow
her lead. This is why!
In September 1996, shortly after lung surgery, Fern's health
deteriorated to the point where her doctors suggested that we call our
children. Fern was rushed to a procedure room to put a bronchoscope
into her lungs to see what was happening. At that moment, Fern told me
to go back and talk to her roommate at the hospital because that woman
had the same illness and was about to have lung surgery. Fern said,
``Please tell her that she is not as sick and this won't happen to
her.'' The other woman looked very much like Fern.. NTM can affect any
one of us but for some unknown reason, it affects more women than men.
What Fern is going through is simply not unique! There are support
groups in New York, California, Texas, Florida, and soon in Boston. The
NTMInfo.com website has now exceeded one million hits. A number of
leading hospitals and a branch of the CDC are linked.
Fern's normal morning routine starts with pulmonary therapy to
clear her airways. Then there is a sinus wash. With breakfast, Fern
takes five different oral drugs and IV medicines. In addition, there
are inhaled medicines. The total time from awakening to being able to
leave the house is usually four (4) hours.
While tuberculosis is often known to appear in inner cities and
immigrant populations, NTM knows no such boundaries. However, current
epidemiologic data is not available. The latest data that we have from
the Centers for Disease Control was collected in the 1980's and we
urgently need newer data. Current data from the University of Toronto
suggests that the prevalence may be six times higher than our older
information. We have no reason to believe that Toronto is any different
than Chicago or any other major U.S. city.
______
Prepared Statement of the Ovarian Cancer National Alliance
On behalf of the Ovarian Cancer National Alliance (the Alliance), I
thank the Subcommittee for this opportunity to submit comments for the
record regarding the Alliance's fiscal year 2006 funding
recommendations that we believe are necessary to help reduce and
prevent suffering from ovarian cancer. For 8 years, the Alliance has
worked to increase awareness of ovarian cancer and advocated increased
federal resources to support research on identifying more effective
ovarian cancer diagnostics and treatments. While I recently joined the
Alliance as executive director, my journey with ovarian cancer began
with my own diagnosis 3 years ago.
As an umbrella organization with 46 state and local groups, the
Alliance unites the efforts of more than 500,000 grassroots activists,
women's health advocates, and health care professionals to bring
national attention to ovarian cancer. As part of this effort, the
Alliance advocates sustained federal investment in the Centers for
Disease Control and Prevention's (CDC) Ovarian Cancer Control
Initiative. The Alliance respectfully requests that Congress provide $9
million for the program in fiscal year 2006.
OVARIAN CANCER'S DEADLY STATISTICS
According to the American Cancer Society, in 2005, more than 22,000
American women will be diagnosed with ovarian cancer, and approximately
16,000 will lose their lives to this terrible disease. Ovarian cancer
is the fourth leading cause of cancer death in women. Currently, more
than half of the women diagnosed with ovarian cancer will die within 5
years. Among African American women, only 48 percent survive 5 years or
more. When detected early, the 5-year survival rate increases to more
than 90 percent, but when detected in the late stages, the 5-year
survival rate drops to 28 percent.
Today, it is both striking and disheartening to see that despite
progress made in the scientific, medical and advocacy communities,
ovarian cancer mortality rates have not significantly improved during
the past decade, and a valid and reliable screening test--a critical
tool for improving early diagnosis and survival rates--still does not
yet exist for ovarian cancer. Behind the sobering statistics are the
lost lives of our loved ones, colleagues and community members. While
we have been waiting for the development of an effective early
detection test--thousands of our sisters, including one-third of our
founding board members, have lost their battle to ovarian cancer.
I am considered one of the lucky ones. When I was diagnosed 3 years
ago, my two cancers--ovarian and endometrial--were found to be in early
Stage 1 when I had the best chance for surviving beyond 5 years--
something only 25 percent of women with this disease can claim. Like
most women diagnosed in early stage ovarian cancer, my good fortune was
not the result of my awareness of the symptoms, it was not the result
of my awareness that I was at a higher risk, and it was not the result
of having access to a currently non-existent early screening test. My
good fortune was the lucky result of my perseverance with my doctor,
and my subsequent treatment by the appropriate gynecologic oncologist
specialist.
I have come to work for the Alliance to ensure that other women can
have the opportunity to be as fortunate as I have been. We cannot rely
on luck for our survival. All women should have access to treatment by
a specialist. All women should have access to a valid and reliable
screening test. We must deliver new and better treatments to patients
and the physicians and nurses who treat patients with this disease tell
us that until we have a test, we must continue to increase awareness
and educate women and health professionals about the signs and symptoms
associated with this disease.
THE OVARIAN CANCER CONTROL INITIATIVE AT THE CENTERS FOR DISEASE
CONTROL AND PREVENTION
As the statistics indicate, among the most urgent challenges in the
ovarian cancer field are late detection and poor survival. The CDC's
cancer program, with its strong capacity in epidemiology and excellent
track record in public and professional education, is well positioned
to address these problems. As the nation's leading prevention agency,
the CDC plays an important role in translating and delivering at the
community level what is learned from research, especially ensuring that
those populations disproportionately affected by cancer receive the
benefits of our nation's investment in medical research.
Specifically, the CDC's Ovarian Cancer Control Initiative helps
give all women the opportunity to survive ovarian cancer. Public
awareness and education programs funded by the program make women and
health professionals aware of the warning signs of ovarian cancer and
examine survival trends based on care received, so they can better
detect the cancer by identifying and understanding symptoms exhibited
in early stages.
In addition, the CDC has a strong tradition of partnering with
primary care physicians to combat two key barriers to early detection--
recognition and diagnosis of the disease. Primary care physicians
usually are the first to see women presenting with the disease.
Increasing awareness and understanding of the signs and symptoms of
ovarian cancer among these physicians can help improve early detection
and survival rates.
Prompted by efforts from leaders of the Alliance and championed by
Representative Rosa DeLauro--with bipartisan, bicameral support--
Congress established the Ovarian Cancer Control Initiative at the CDC
in November 1999. Congress' directive to the agency was to develop an
appropriate public health response to ovarian cancer and conduct
several public health activities targeted toward reducing ovarian
cancer morbidity and mortality.
Currently, the Ovarian Cancer Control Initiative supports several
national program grants, including three new CDC funded state
initiatives:
--The Center for Health Promotion and Prevention Research at the
University of Texas in Houston--Funded to conduct a study
focusing on symptoms relating to early detection of ovarian
cancer and staging distinctions.
--The School of Public Health at the University of Alabama at
Birmingham--Funded to conduct a study focusing on barriers to
early detection of ovarian cancer.
--The North American Association of Central Cancer Registries
(NAACCR)--Funded to analyze and report data on ovarian cancer
incidence by race, and to find new ways to improve accuracy of
ovarian cancer incidence and mortality data among women who are
neither Caucasian nor African American.
--The Department of Preventive Medicine at the University of Southern
California--Funded for 1 year to analyze cancer registry data
on borderline ovarian cancer cases in California.
--The Oklahoma University Health Sciences Center--Funded to conduct a
2-year, multiple component study of women experiencing possible
ovarian cancer symptoms, how they seek treatment, and possible
barriers to their medical care.
--Battelle Centers for Public Health and Evaluation--Funded to
conduct a review of medical literature on clinical management
of non-specific abdominal and pelvic symptoms potentially
suspicious of ovarian cancer in older women. The review will
provide the foundation for CDC funding to develop evidence-
based guidelines for primary care providers to increase ovarian
cancer cases detected in early stages.
--State tumor registries in California, Maryland, and New York--Each
state received funding from the National Program of Cancer
Registries to conduct a 3 year study to determine the
proportion of women who had their initial surgery performed by
a gynecologic oncologist and to detail aspects of the second
course of treatment provided.
taking the next step in prevention and awareness
In only 5 years, the CDC's Ovarian Cancer Control Initiative, with
its support of studies on early detection and underserved populations,
has made an important contribution to a better understanding and
awareness of the disease. However, without a screening test, it is
clear that more needs to be done. Additional funding in fiscal year
2006 will enable the CDC to expand the reach and scope of its current
ovarian cancer initiatives to help advance our nation's effort's to
reduce and prevent ovarian cancer morbidity and mortality. The
allocation of $9 million in fiscal year 2006 funding will continue the
excellent progress being made and could expand the program's efforts to
include:
--Development of a risk model for ovarian cancer like the model for
breast cancer. This would help health care professionals
identify high-risk women, who then could be monitored
regularly. By helping health care providers to be ``on alert,''
they have the information and tools they need to catch the
disease early and improve survival rates.
--Conduct an education campaign targeted to high-risk women to
educate them about the signs and symptoms of ovarian cancer,
the importance of regular monitoring, and strategies for risk
reduction.
--Development and implementation of a national campaign to inform
primary care physicians, who are usually the first to see women
with symptoms, about ovarian cancer.
--Examination of the reasons why minority women have higher mortality
rates and development of appropriate strategies for addressing
this terrible health disparity.
--Conduct an education initiative targeted to health care
professionals about best practices for treating the disease,
especially referral to a gynecologic oncologist for optimal
survival outcome.
A SUSTAINED COMMITMENT TO FUND CANCER RESEARCH
When funding stagnates or does not keep pace with inflation,
progress in critical research programs is halted or slows
significantly. Inadequate funding for the National Institutes of Health
(NIH) and the National Cancer Institute (NCI) means smaller ``trickle
down'' occurs for the lesser-known or less popular--yet terribly
devastating--diseases like ovarian cancer. To ensure adequate funding
for all types of cancer, particularly those most deadly and least
understood, the Alliance joins the cancer community in asking for $30.1
billion for NIH and $6.17 billion for NCI in fiscal year 2006.
SUMMARY
The Alliance maintains a long-standing commitment to work with
Congress, the Administration, and other policymakers and stakeholders
to improve the survival rate from ovarian cancer through education,
public policy, research, and communication. Please know that we
appreciate and understand that our nation faces many challenges and
Congress has limited resources to allocate, however, we are concerned
that without increased funding to bolster and expand ovarian cancer
education, awareness, and research efforts, the nation will continue to
see growing numbers of women losing their battle with this terrible
disease.
On behalf of the entire ovarian cancer community--patients, family
members, clinicians and researchers--we thank you for your leadership
and support of federal programs that seek to reduce and prevent
suffering from ovarian cancer. Thank you in advance for your support of
$9 million in fiscal year 2006 funding for the CDC's Ovarian Cancer
Control Initiative.
______
Prepared Statement of the Pulmonary Hypertension Association
SUMMARY OF FISCAL YEAR 2006 RECOMMENDATIONS
--$250,000 within the Centers for Disease Control and Prevention
(CDC) for a pulmonary hypertension awareness and education
program.
--A 6 percent increase for the National Heart, Lung and Blood
Institute (NHLBI) and the establishment of Pulmonary
Hypertension Centers of Excellence at the Institute.
--$30 million for the Health Resources and Services Administration's
(HRSA) ``Gift of Life Donation Initiative.
Mr. Chairman, thank you for the opportunity to submit testimony on
behalf of the Pulmonary Hypertension Association.
I am Dr. Anne Caesar, a professor of medicine at Georgetown
University and a pulmonary hypertension patient (PH). PH is a rare
disorder involving both the heart and the lungs. The walls of the blood
vessels that supply the lungs thicken and often constrict, making them
unable to carry normal amounts of blood. The heart works harder to
compensate and eventually can't keep up. Life is threatened. Currently,
there is no cure. Symptoms of pulmonary hypertension include shortness
of breath with minimal exertion, fatigue, chest pain, dizzy spells and
fainting.
When PH occurs in the absence of a known cause, it is referred to
as primary pulmonary hypertension (PPH). This term should not be
construed to mean that because it has a single name it is a single
disease. There are likely many unknown causes of PPH.
Secondary pulmonary hypertension (SPH) means the cause of the
disease is known. Common causes of SPH are the breathing disorders
emphysema and bronchitis. Other less frequent causes are scleroderma,
CREST syndrome and systemic lupus. In addition, the use of diet drugs
can lead to the disease.
While new treatments are available, unfortunately, PH is frequently
misdiagnosed and often progresses to late stages by the time it is
detected. Although PH is chronic and incurable with a poor survival
rate, the new treatments becoming available are providing a
significantly improved quality of life for patients. Recent data
indicates that the length of survival is continuing to improve, with
some patients able to manage the disorder for 20 years or longer.
Eleven years ago, when three patients who were searching to end
their own isolation founded this organization, there were less than 200
diagnosed cases of this disease. It was virtually unknown among the
general population and not well known in the medical community. They
soon realized that this was not enough and as membership began to
grow--driven by a newsletter written by patients and distributed by
doctors--and as a community began to form, an 800 number support line
was launched, support groups were established, a Scientific Advisory
Board (SAB) was formed, a Patient's Guide to Pulmonary Hypertension was
written, and a web site was launched.
Today, PHA includes:
--Over 5,000 patients, family members, and medical professionals.
--An international network of over 100 support groups.
--An active and growing patient telephone helpline.
--A new and fast-growing research fund. (A cooperative agreement has
been signed with the National Heart, Lung, and Blood Institute
to jointly create and fund five, five-year, mentored clinical
research grants and PHA has awarded seven Young Researcher
Grants.)
--A host of numerous electronic and print publications, including the
first medical journal devoted to pulmonary hypertension--
published quarterly and distributed to all cardiologists,
pulmonologists and rheumatologists in the United States.
CENTERS FOR DISEASE CONTROL AND PREVENTION
PHA applauds the subcommittee for its leadership in encouraging CDC
to initiate a professional and public PH awareness campaign. We
continue to work with officials at the CDC to establish this important
program which will better inform health care professionals and the
general public about PH, its symptoms, and treatment options.
PHA knows that Americans are dying because of a lack of awareness
of both pulmonary hypertension and recent advances in research and
treatments. Most particularly, this is true among underserved
populations. These are the least likely and the least able to see the
three and four doctors it often takes to get a correct diagnosis. We
believe that activities proposed below need to include special focus on
reaching underserved populations and their medical services.
The following is a description of the specific initiatives we hope
to launch in collaboration with CDC.
(1) Increasing awareness and understanding of PH among primary care
physicians is critically important, because these practitioners are
usually the first point of contact for PH patients. If the primary care
doctor misses the symptoms, then the chance for early diagnosis depends
upon the intuition and persistence of the patient. They have a chance,
if they aggressively pursue diagnosis by trained and aware specialists.
If they are not aggressive, or if they are in a health plan that
requires their general practitioner to prescribe the referral, they are
more likely to go undiagnosed until it is too late to control their
illness. To increases awareness we propose to launch the following:
--Written and video diagnostic tools for placement on the Internet.
--Working with state health departments and clinic administrators to
develop information for mailing to primary care physicians,
medical schools and medical centers in the United States
drawing their attention to the new web resources.
--A simplified and visually attractive print version of the proper
diagnostic procedures, which will be targeted to primary care
physicians, public health clinics, medical schools, and medical
centers in the United States.
--Advertising in publications general practitioners and public health
professionals are likely to read. The emphasis will be the
importance of early diagnosis and the ease of accessing
diagnostic tools via the Internet.
--Improvements to an already produced CD-ROM that explains pulmonary
hypertension from a variety of perspectives. We would like to
make these available to the medical community and patients
through our web site on an as requested basis and at
conferences and through targeted mailings.
(2) Due to the advancements in treatment for PH, it is important
that we also focus on educating cardiologists and pulmonologists. Our
strategies for reaching cardiovascular specialists include:
--Expansion of the first Pulmonary Hypertension Journal focused on
educating a cardiologists and pulmonologists on issues related
to the diagnosis and treatment of the illness.
--Placement of additional detailed information on the illness on the
web. The PH Journal and other publications will promote this
availability.
--Expansion of the medical section of PHA's international conference
on pulmonary hypertension (the largest PH conference in the
world).
--Expansion of PHA's Pulmonary Hypertension Resource Network. This
program is focused on increasing awareness and knowledge of PH
among nurses, respiratory therapists, technicians and
pharmacists through peer education.
(3) Finally, PHA is committed to increasing PH awareness among the
general public through the development of the following initiatives:
--A series of 10, 15, and 30 second public service announcements on
PH. These PSAs will be in both audio and video form.
--A PH media relations manual.
--An organ donation and transplant listing Awareness Campaign
(unfortunately, many PH patients die before finding a suitable
organ donor).
--Expansion of awareness and information activities on PHA's web
site.
--Continuation of PH Awareness Month.
PHA and CDC have engaged in an ongoing dialogue about these and
other strategies designed to increase awareness of PH. We are grateful
for CDC's support of a DVD focused on the diagnosis of PH. However,
despite repeated encouragement from the subcommittee, CDC has not
established an ongoing awareness and education initiative on this
devastating disease. Therefore, for fiscal year 2006, we encourage you
to provide $250,000 within CDC's Cardiovascular Disease program for the
formal establishment of this important initiative.
NATIONAL HEART, LUNG AND BLOOD INSTITUTE
Mr. Chairman, PHA commends the leadership of the National Heart,
Lung and Blood Institute (NHLBI) for its support of PH research. Three
years ago, two separate groups of scientists funded by NHLBI
simultaneously identified a genetic mutation associated with primary
pulmonary hypertension.
The two groups independently reported that defects in the BMPR2
gene, which regulates growth and development of the lung, are
associated with PPH. The defects in the gene lead to the abnormal
proliferation of cells in the lung characteristic on PPH.
Although both studies suggest that only one gene is involved in
PPH, neither group identified the defects in BMPR2 as the sole cause of
PPH. In addition, since many people without a known family history of
PPH get the disease, both groups suggested that other factors may
interfere with control of the tissue growth. Now that we have
pinpointed a gene, we can focus on learning how it works. Hopefully,
that information will enable researchers to devise better treatments
and perhaps eventually a preventive therapy or cure.
We greatly appreciate NHLBI's commitment to advancing research to
better understand and ultimately cure this disease. Morever, we applaud
the subcommittee's strong support of PH research at the Institute. For
fiscal year 2006, PHA recommends a 6 percent increase for NHLBI and the
NIH overall. In addition, PHA recommends the establishment of three
pulmonary hypertension ``Centers of Excellence'' at NHLBI to support
the expansion of research, training and information dissemination.
Finally, we encourage the establishment of a PH data system and
clearinghouse at the Institute.
GIFT OF LIFE DONATION INITIATIVE AT HRSA
Mr. Chairman, PHA applauds the success of the Department of Health
and Human Services ``Gift of Life'' Donation Initiative. Currently,
there are three drugs that PH patients can be prescribed to help
improve the quality of life with PH. Eventually, many patients must
move toward lung or heart and lung transplantation. PH is a difficult
to diagnose illness and while patients often list soon after diagnosis,
for many PH patients it is too late. This why PHA is developing the
Bonnie's Gift Project.
Bonnie's Gift was started in memory of Bonnie Dukart, one of PHA's
most active and respected leaders. Bonnie was a PH patient herself. She
battled with PH for almost 20 years until her death in 2001 following a
double lung transplant. Prior to her death, Bonnie expressed an
interest in the development of a program within PHA related to
transplant information and awareness. PHA will use Bonnie's Gift as a
way to disseminate information about PH, the importance of early
listing, the importance of organ donation to our community and organ
donation cards.
PHA has entered into a partnership with the ``Gift of Life''
Donation Initiative to increase awareness of the importance of organ
donation and early listing within the PH community. For fiscal year
2006, PHA supports an appropriation of $30 million for HRSA's Gift of
Life program.
CONCLUSION
Mr. Chairman, once again thank you for the opportunity to present
the views of the Pulmonary Hypertension Association. We look forward to
continuing to work with you and the subcommittee to improve the lives
of pulmonary hypertension patients. If you have any questions or would
like additional information, please do not hesitate to contact me or
the Pulmonary Hypertension Association's National Office.
______
Prepared Statement of the Society of Nuclear Medicine
The Society of Nuclear Medicine (SNM) appreciates the opportunity
to submit written testimony for the official record regarding federal
funding for biomedical research in fiscal year 2006.
SNM is an international, scientific, and professional organization
with more than 16,000 members dedicated to promoting the science,
technology, and practical application of nuclear medicine. Over the
last 50 years, since biomedical imaging first began, the Nuclear
Medicine community has made groundbreaking discoveries thanks to the
research and development that was facilitated at the National
Institutes of Health (NIH). To that end, the Society strongly
recommends sufficient levels of federal funding to sustain and seize
new opportunities in biomedical research.
The Society of Nuclear Medicine stands ready to work with
policymakers at the local, state, and federal levels to advance
biomedical research policies and programs that will reduce and prevent
suffering from disease.
WHAT IS NUCLEAR MEDICINE?
Nuclear Medicine is an established specialty that performs non-
invasive molecular imaging procedures to diagnose and treat diseases,
and also to determine the effectiveness of therapeutic treatments--
whether surgical, chemical, or radiation. It contributes extensively to
the treatments and diagnoses of patients with cancers of the brain,
breast, blood, bone, bone marrow, liver, lungs, pancreas, thyroid,
ovaries, and prostate. Molecular imaging continues to provide expert
information to help doctors, technicians, and other health care
personnel manage abnormalities of the heart, brain, and kidneys. In
fact, recent advances in the detection and diagnosis of Alzheimer's
disease can be attributed to Nuclear Medicine imaging procedures,
specifically positron emission tomography (PET) scans. These advances--
which were made possible by research from nuclear medicine
professionals--helped lead the Centers for Medicaid and Medicare
Services (CMS) to extend Medicare coverage to include PET scans for
some beneficiaries who suffer from Alzheimer's and other dementia-
related diseases.
CMS Administrator Mark B. McClellan announced the coverage by
saying: ``Together with outside experts and other agencies we examined
the available data and determined that we ought to approve coverage for
patients who've been worked up but whose diagnosis is uncertain.'' \1\
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\1\ CMS Press Release--Sept. 14, 2004--Medicare Posts Coverage
Decision to Expand Coverage of PET Scans for Alzheimer's. http://
www.cms.hhs.gov/media/press/release.asp?Counter=1200.
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CMS' decision was also explained by Dr. Sean Tunis, CMS' Chief
Medical Officer. He said: ``The available evidence supports the
conclusion that PET scans help to evaluate patients with progressive
symptoms of dementia, but for whom a diagnosis remains unclear despite
a thorough standard medical evaluation. We will also support the
conduct of additional studies that will determine the value of PET
scans required in a broader population of Medicare beneficiaries who
develop symptoms of dementia.''
The effect nuclear medicine has on people is far-reaching.
Annually, more than 16 million men, women, and children require
noninvasive molecular/nuclear medical procedures. These safe, cost-
effective procedures include PET scans to diagnose and monitor
treatments in cancer; cardiac stress tests that analyze heart function;
bone scans for orthopedic injuries; and lung scans for blood clots. In
addition, patients undergo procedures to diagnose liver and gall
bladder functional abnormalities and to diagnose and treat
hyperthyroidism and thyroid cancer.
SUSTAIN AND SEIZE RESEARCH OPPORTUNITIES
For decades, Americans and people from across the world have
benefited from the strong federal investment in nuclear medicine and
biomedical research at the National Institutes of Health. We can safely
say, in the words CMS Administrator McClellan, ``the technology is
promising.'' \2\ The Society hopes that this subcommittee will continue
its trend of forward thinking and federally fund NIH and the National
Institute of Biomedical Imaging and Bioengineering (NBIB) and the
National Cancer Institute (NCI) at sufficient levels for fiscal year
2006.
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\2\ CMS Press Release--Sept. 14, 2004--Medicare Posts Coverage
Decision to Expand Coverage of PET Scans for Alzheimer's. http://
www.cms.hhs.gov/media/press/release.asp?Counter=1200.
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SNM is proud to join its colleagues in the public health community
in recommending that in fiscal year 2006, NIH is funded at a level
totaling $30.1 billion. This funding level will permit NIH to sustain
and build upon its current research activities, which are a byproduct
of the recent NIH budget doubling effort. Even a minimal decrease or
slowed momentum of increased funding in NIH's budget could cause severe
disruption in the research activities and capabilities.
In 1946, the first successful nuclear magnetic resonance (NMR)
experiments were performed. This led to the first nuclear magnetic
resonance imaging (MRI) exam performed on a human being 31 years later
in 1977. From the first MRI in 1977 to today, critical advances in
technology have developed, allowing physicians, nuclear medicine
technicians and other health care professionals to image in seconds
what used to take hours, days, or even weeks. Research in biomedical
imaging and bioengineering is progressing rapidly and recent
technological advances have revolutionized the diagnosis and treatment
of disease. In 2000, the National Institute of Biomedical Imaging and
Bioengineering was created. This NIH institute, specifically focused on
biomedical imaging and bioengineering, has made great strides in
helping the health care community and its patients recognize and
understand different diseases and disorders. Pancreatic
transplantation, brain scans, improvement to epilepsy surgeries are
just a few examples of how NIBIB research is helping diagnose and treat
patients. In order for NIBIB to continue moving forward with its
research, SNM requests $350 million in federal funding for fiscal year
2006. This funding level will allow NIBIB to further its research,
development, and application of emerging and breakthrough biomedical
technologies that will facilitate improved disease detection,
management, and prevention.
In addition, SNM advocates that another arm of NIH that uses
molecular imaging, NCI, receive sufficient funding--$5.21 billion--in
fiscal year 2006. The American Cancer Society predicts that more than a
million Americans will be diagnosed with cancer in 2005. We have made
significant gains in the war on cancer, and there have been successful
breakthroughs in diagnosing and treating this terrible disease.
Currently PET scans are available to detect more than a dozen types of
cancer. Cancer research is leading to new therapies that translate into
longer survival and improved quality of life for cancer patients.
Extraordinary advances in cancer research have resulted because of the
strong commitment by the federal, state, and local governments in
combating cancer. Effective prevention, early detection, and treatment
methods for many cancers have resulted from this governmental interest,
intervention and public education campaign. In order to continue making
a strong case against cancer, SNM requests that the Committee allocate
$5.21 billion in federal funds for the NCI in fiscal year 2006.
CONCLUSION
As outlined above, SNM has a strong and vested interest in making
sure that biomedical research in the United States is sufficiently
funded. It is in everyone's best interest that the federal government
invests the needed dollars to continue the pursuit of medical
breakthroughs in technology and science. Without the sufficient funding
levels--which include $30.1 billion for NIH, $350 million for NIBIB,
and $5.21 billion for NCI--the positive effects and results of research
and development are seriously compromised.
SNM stands ready to work with policymakers from both sides of the
aisle to advance biomedical research and innovation to help reduce and
prevent suffering from disease for all Americans. Again, on behalf of
the members of SNM, I thank you for the opportunity to submit testimony
regarding the absolute need for increased federal funding for
biomedical research. I am available to answer any questions you may
have.
______
Prepared Statement of the Spina Bifida Association of America
On behalf of the more than 70,000 individuals and their families
who are affected by Spina Bifida, the Spina Bifida Association of
America (SBAA) appreciates the opportunity to submit written testimony
for the record regarding increased funding for the National Spina
Bifida Program and other related Spina Bifida initiatives in fiscal
year 2006. SBAA is the national voluntary health agency working on
behalf of people with Spina Bifida and their families through
education, advocacy, research, and service. The Association was founded
in 1973 to address the needs of the Spina Bifida community and today
serves as the representative of 57 chapters serving more than 125
communities nationwide. SBAA stands ready to work with Members of
Congress and other stakeholders to ensure that our Nation takes all the
steps necessary to reduce and prevent suffering from Spina Bifida.
BACKGROUND ON SPINA BIFIDA
Spina Bifida is a neural tube defect (NTD) and occurs when the
spinal cord fails to close properly during the early stages of
pregnancy, typically within the first few weeks of pregnancy and most
often before the mother knows that she is pregnant. Over the course of
the pregnancy--as the fetus grows--the spinal cord is exposed to the
amniotic fluid which becomes increasingly 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, 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 neural tube defect is that most children with it
suffer from a host of physical, psychological, and educational
challenges--including paralysis, developmental delay, numerous
surgeries, and living with a shunt in their skulls, which helps to
relieve cranial pressure associated with spinal fluid that does not
flow properly. We are pleased to report that after decades of poor
prognoses and short life expectancy, children with Spina Bifida are now
living long enough to become adults with Spina Bifida. These gains in
longevity are principally due to breakthroughs in research, combined
with improvements generally in health care and treatment. However, with
this extended life expectancy, our Nation and people with Spina Bifida
now face new challenges--education, job training, independent living,
health care for secondary conditions, aging concerns, among others.
Despite these gains, individuals and families affected by Spina Bifida
face many challenges--physical, emotional, and financial.
Recent studies have shown that if all women of childbearing age
were to consume 400 micrograms of folic acid daily prior to becoming
pregnant and throughout the first trimester of pregnancy, the incidence
of Spina Bifida could be reduced by up to 75 percent. However, even if
we are successful in preventing the majority of Spina Bifida cases in
the future, our Nation still must take steps to ensure that the tens of
thousands of individuals living with Spina Bifida can live full,
healthy, and productive lives. To ensure the highest quality-of-life
possible, prevention interventions and treatment therapies must be
identified, developed, and delivered to those in need.
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. Our Nation must do more
to help reduce the emotional, financial, and physical toll of Spina
Bifida on the individuals and families affected. Efforts to reduce and
prevent suffering from Spina Bifida help to save money and save lives.
improving quality-of-life through the national spina bifida program
Secondary conditions associated with Spina Bifida include full or
partial paralysis, neurological disorders, bladder and bowel control
difficulties, learning disabilities, depression, latex allergy,
obesity, skin breakdown, and social and sexual issues. Children with
Spina Bifida often have learning disabilities and may have difficulty
paying attention, expressing or understanding language, and grasping
reading and math. Early intervention with children who experience
learning problems can help considerably to prepare them for school.
With appropriate, affordable, and high-quality medical, physical, and
emotional care, most people born with Spina Bifida likely will have a
normal or near normal life expectancy. Ensuring access to these
services is essential to improving the quality-of-life for those born
with this birth defect.
SBAA has worked with Members of Congress to ensure that our Nation
is taking all the steps possible to prevent Spina Bifida and diminish
suffering for those living with this condition. As part of this
comprehensive effort, SBAA collaborated with Members of Congress and
other interested parties to secure an essential increase in fiscal year
2005 funding for the National Spina Bifida Program at the National
Center for Birth Defects and Developmental Disabilities (NCBDDD) at the
Centers for Disease Control and Prevention (CDC). SBAA thanks the
Members of the Subcommittee for their expression of support for this
new and integral program by allocating $3.6 million in fiscal year
2005.
The National Spina Bifida Program works on two critical levels--to
reduce and prevent Spina Bifida incidence and morbidity and to improve
quality-of-life for those living with Spina Bifida. The program seeks
to ensure that what is known by scientists is practiced and experienced
by the 70,000 individuals and families affected by Spina Bifida. For
example, the program helps individuals with Spina Bifida and their
families learn how to treat and prevent secondary health problems,
which range from learning disabilities and depression to severe
allergies and skin problems that make life difficult for these
individuals. All of these problems can be treated or prevented, but
only if those affected by Spina Bifida--and their caregivers--are
properly educated and taught what they need to know to maintain the
highest level of health and well-being possible.
Second, the National Spina Bifida Program offers benefits to those
who live with Spina Bifida and their families by working to improve the
outlook for a life challenged by this complicated birth defect--
principally identifying potentially valuable therapies from in-utero
throughout the lifespan and making them available and accessible to
those in need. These secondary prevention activities represent a
tangible quality-of-life difference to the 70,000 individuals living
with Spina Bifida. With the goal being living well with Spina Bifida,
the secondary prevention initiatives are focused on the creation and
implementation of strategies to improve the quality-of-life. These
quality-of-life efforts center on reaching the general population with
Spina Bifida, advancing treatment of Spina Bifida and its related
conditions, and working with adolescents living with Spina Bifida to
address their specific academic, psycho-social, and vocational needs.
In addition, the National Spina Bifida Program will create and
implement a comprehensive program to assist teens with Spina Bifida in
the development of life skills for independence, self-reliance, and
success in the world.
SBAA advocates that the National Spina Bifida Program receive $5.5
million in fiscal year 2006 so the NCBDDD can expand and continue to
promote quality-of-life programs that support people with Spina Bifida
so they can live fulfilling and productive lives. In its first three
years, this program already has made a difference for our community and
with additional resources it can expand its reach and provide
additional assistance and hope to those with an affected loved one.
Increasing funding for the National Spina Bifida Program will help
ensure that our nation continues to mount a comprehensive effort to
prevent and reduce suffering from Spina Bifida.
PREVENTING SPINA BIFIDA
While the exact cause of Spina Bifida is unknown, over the last
decade, medical research has confirmed a link between a woman's folate
level before pregnancy and the occurrence of Spina Bifida. Sixty
million women are at-risk of having a child born with Spina Bifida and
each year approximately 3,000 pregnancies in this country are affected
by Spina Bifida, resulting in 1,500 births. As mentioned above,
research has found that the consumption of 400 micrograms of folic acid
daily prior to becoming pregnant and throughout the first trimester of
pregnancy can help reduce incidence of Spina Bifida up to 75 percent.
There are few public health challenges that our Nation can tackle and
conquer by three-fourths in such a straightforward fashion. However, we
must still be concerned with addressing the 25 percent of Spina Bifida
cases that cannot be prevented by folic acid consumption, as well as
ensuring that all women of childbearing age--particularly those most
at-risk for a Spina Bifida pregnancy--consume adequate amounts of folic
acid.
The good news is that progress has been made in convincing women of
the importance of folic acid consumption and the need to maintain diet
rich in folic acid. Since 1968, the CDC has led the Nation in
monitoring birth defects and developmental disabilities, linking these
health outcomes with maternal and/or environmental factors that
increase risk, and identifying effective means of reducing such risks.
Former CDC Director Jeff Koplan has stated that the agency's folic acid
prevention campaign has reduced neural tube defect births by 20
percent. This public health success should be celebrated, but it is
only half of the equation as approximately 3,000 pregnancies still are
affected by this devastating birth defect. The Nation's public
education campaign around folic acid consumption must be enhanced and
broadened to reach segments of the population that have yet to heed
this call--such an investment will help ensure that as many cases of
Spina Bifida can be prevented as possible.
SBAA works collaboratively with CDC and other nonprofits to
increase awareness of the benefits of folic acid, particular for those
at elevated risk of having a baby with neural tube defects (those who
have Spina Bifida themselves or those who have already conceived a baby
with Spina Bifida). With additional funding in fiscal year 2006 these
activities could be expanded to reach the broader population in need of
these public health education, health promotion, and disease prevention
messages. SBAA advocates that Congress provide additional funding to
CDC to allow for a particular public health education and awareness
focus on at-risk populations (e.g. Hispanic-Latino communities) and
health professionals who can help disseminate information about the
importance of folic acid consumption among women of childbearing age.
In addition to a $5.5 million fiscal year 2006 allocation for the
National Spina Bifida Program, SBAA supports a fiscal year 2006
allocation of $135 million for the NCBDDD so the agency can enhance its
programs and initiatives to prevent birth defects and developmental
disabilities and promote health and wellness among people with
disabilities.
IMPROVING HEALTH CARE FOR INDIVIDUALS WITH SPINA BIFIDA
The mission of the Agency for Healthcare Research and Quality
(AHRQ) is to improve the outcomes and quality of health care; reduce
its costs; improve patient safety; decrease medical errors; and broaden
access to essential health services. The work conducted by the agency
is vital to the evaluation of new treatments in order to ensure that
individuals and their families living with Spina Bifida continue to
receive the high quality health care that they need and deserve. SBAA
recommends that AHRQ receive $440 million in fiscal year 2006 so that
it can continue to conduct follow-up efforts to evaluate Spina Bifida
treatments, promulgate associated standards of care, and further the
provision of evidence-based care stemming from the outcomes of the 2003
Spina Bifida Research Conference. A new partnership between the Centers
for Disease Control and AHRQ to develop treatments for Spina Bifida
brings new hope for families living with Spina Bifida.
SUSTAIN AND SEIZE SPINA BIFIDA RESEARCH OPPORTUNITIES
SBAA seeks to support individuals and families affected by Spina
Bifida, maximize the prevention of Spina Bifida, and ensure that all
babies born with Spina Bifida have the greatest chance of survival and
the highest quality-of-life--through the lifespan. When families
recently diagnosed with a Spina Bifida pregnancy contact SBAA, the
organization puts them in touch with other families who have a child
with the condition so they can learn of the joys and challenges of
having a child with the birth defect. Unfortunately, traditionally when
families are faced with a Spina Bifida diagnosis they have had two
difficult options. The first is to continue the pregnancy with the
expectation of multiple surgeries for the child after birth, uncertain
life expectancy, and many physical and developmental challenges and
complications. The second, unfortunately, is to terminate the
pregnancy. Fortunately, now there may be an important and effective
third option.
Since the late 1990s, doctors at three U.S. hospitals--Children's
Hospital of Philadelphia, Vanderbilt University Medical Center in
Nashville, and the University of California at San Francisco--have been
operating before birth on fetuses diagnosed with Spina Bifida. In 2003,
the University of North Carolina became the fourth hospital in the
Nation to perform the in-utero operations. By closing the spinal lesion
early in pregnancy, physicians believe they can minimize the damage
created by fluid leaking from the spine, as well as limit by the harm
done due to the spinal cord's contact with the amniotic fluid. Surgeons
have found that closing the hole in the spine in this fashion before
birth may correct breathing problems in 15 percent of the children
receiving the procedure and may reduce the need for a shunt to drain
fluid from the brain by between 33 percent and 50 percent.
To determine whether or not this new procedure is safer and more
effective than the traditional post-birth surgery to address the
condition, the National Institute of Child Health and Human Development
(NICHD) is conducting a large study involving the Children's Hospital
of Philadelphia, Vanderbilt University Medical Center, and the
University of California at San Francisco. While these three
institutions have undertaken preliminary studies of the in-utero
surgery technique, the overall and long-term effectiveness of this
approach as compared to traditional therapy remains unknown. Given the
potential for this surgery to ameliorate many of the conditions
associated with Spina Bifida, we must do a better job of studying and
evaluating this procedure, educating health care providers about this
surgery as a potential option, and making information about it
available to more families facing a Spina Bifida pregnancy.
Our Nation has benefited immensely from past federal investment in
biomedical research at the National Institutes of Health (NIH). SBAA
joins with the rest of the public health community in advocating that
NIH receive $30.1 billion in fiscal year 2006. 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, SBAA urges the NIH to explore the following as
they relate to individuals with Spina Bifida: assistive technology, in
utero surgery, cost of care, women's and men's health, tethered cord,
hydrocephalus, latex allergies, and other related factors.
CONCLUSION
SBAA stands ready to work with policymakers to advance policies
that will reduce and prevent suffering from Spina Bifida. Again, we
thank you for the opportunity to present our views on funding for
programs that will improve the quality-of-life for the 70,000 Americans
and their families living with Spina Bifida and stand ready to answer
any questions you may have.
______
Prepared Statement of the Society for Investigative Dermatology
SUMMARY OF FISCAL YEAR 2006 RECOMMENDATIONS
(1) A 6 percent increase for all of the National Institutes of
Health and the National Institute of Arhtritis and Musculoskeletal and
Skin Dieseases (NIAMS).
(2) Encourage NIAMS to create and enhance academic and educational
opportunities for the advancement of scientific investigation of skin
health and dermatologic diseases.
(3) Encourage NIAMS to sponsor further burden of skin disease
research and epidemiology activities to investigate general and skin-
disease specific measures in order to generate data surrounding the
incidence, prevalence, economic burden, quality of life, disability and
handicaps attributable to these diseases.
(4) Promote the development of NIH-supported training resources
dedicated to attract more individuals to careers in skin disease
research.
Mr. Chairman, and members of the subcommittee--I am very grateful
for this opportunity to testify on behalf of the Society for
Investigative Dermatology. I am Dr. Kevin Cooper, Professor of
Dermatology, Chairman and Director of the Skin Diseases Research Center
at the Department of Dermatology at Case Western Reserve University. I
have been a physician and investigator serving the VA for 20 years in a
part time capacity as a component of my academic work. I also serve as
President of the Society for Investigative Dermatology.
BACKGROUND
The Society for Investigative Dermatology has over 2000 members
worldwide dedicated to the advancement and promotion of the sciences
relevant to skin health and disease through education, advocacy, and
the scholarly exchange of scientific information. Members include
scientists and physician researchers from universities, hospitals, and
industries committed to the science of dermatology. Each member firmly
believes that further research is critical to improved prevention,
diagnosis, and treatment for the 3,000 different diseases of the skin,
hair, and nails, which affect about 80 million Americans each year.
My purpose in being here today is to emphasize the need for
increased funding for the National Institutes of Health (NIH) and the
National Institute of Arthritis and Musculoskeletal and Skin Diseases
(NIAMS), and to encourage follow-up to the ``Burden of Skin Disease''
workshop that took place in 2002. The workshop was held with the
intention to investigate general and skin-disease specific measures in
order to generate data surrounding the incidence, prevalence, economic
burden, quality of life, disability and handicaps attributable to these
diseases.
Good health depends on healthy skin. Much of what we see on the
outside of the body is a reflection of a person's health inside. From
the yellow of hepatitis, to the deep purple lesions of Kaposi's
sarcoma--a common side effect of AIDS, from the sizeable skin lesions
of lupus erythematosus, to the painful deformed nails which may occur
in patients with severe arthritis and psoriasis--health disorders often
show up first as problems on the skin's surface. Skin samples are often
used to make genetic diagnoses of internal disorders and in the future,
the skin may be a target for gene replacement.
Advances in cell biology allow us to understand the life cycle of
skin and hair-producing cells and to explain how a malfunctioning
immune system undermines the health of the body overall and the skin,
in particular. Furthermore, the ongoing revolution in molecular and
cell biology, genetics, immunology, information and laser technology
provides unprecedented opportunities for achieving advances in basic
research and medical treatment. We are becoming rapidly more adept at
growing skin cells in the laboratory and at producing artificial skin.
Increasingly, laser surgery is commonly replacing more invasive and
traditional surgical methods.
I would like to thank you for the increase in funding the
subcommittee provided in fiscal year 2004 for NIH overall and for
NIAMS. This year, we recommend a 6 percent increase for the NIH budget,
and a similar percentage increase for NIAMS, which would lead to a
funding level of $542 million for NIAMS. As the population ages and we
live longer, dermatologists will be asked increasingly to treat cancers
and other skin disorders that appear more often in aged individuals.
Dermatologists will need to find new and better ways to help prevent
and heal common conditions of the elderly, such as bed sores. Ulcers of
the skin alone cost $8 billion per year to diagnose and treat.
I would also like to thank the subcommittee for the inclusion of
the conference report language in your fiscal year 2005 bill, calling
for further attention to the numerous research opportunities and
developments identified during the September 2002 Burden of Skin
Disease workshop. Further exploration into the economic and social
costs of skin disease in the U.S. population is necessary, as an
analysis into many related areas has not been updated since 1979. More
data must be collected to determine the prevalence of skin diseases and
the disabilities they inflict upon those suffering from them. The
translation of statistical data and methodology into improved bedside
care must be a priority.
The costs to society for medical care and lost wages due to
conditions of the skin, hair and nails is estimated to be in the
billions annually. However, the costs to those suffering from these
debilitating conditions are immeasurable: they encounter discomfort and
pain, physical disfigurement, disability, dependency and death. Skin
conditions affect an individual's ability to interact with others and
compromise the self-confidence of those inflicted.
RESEARCH ADVANCES
The past two decades have seen explosive growth in technology and
in increased sophistication in our understanding of the genetic and
cellular mechanisms underlying many skin, hair and nail disorders. One
consequence of these findings is a radical new paradigm shift in which
the skin is now viewed as a complex organ that is intimately responsive
to the immune system of the body. Several distinct cell types in the
skin actively generate, regulate and perpetuate immune responses. Other
important new research findings include the following:
--A gene responsible for the inherited form of basal cell carcinoma
has been identified and may lead to new information as to the
origins of skin cancer.
--A gene for an inherited form of hair loss has been discovered.
--A new protein that links collagen and vascular defects in
scleroderma has been identified.
--Advances in the design of drug-delivery systems allow for sustained
release of drugs through the skin, which will most likely lead
to treatments that are more effective.
--Methods to grow real and artificial skin in laboratories are used
to prepare skin grafts for burn victims.
The past two decades have focused on developing evaluation
techniques such as clinical epidemiology, biostatistics, economics, and
the quantitative social sciences used to determine the effectiveness of
certain procedures and whether they contribute to the quality of life
and health of both patients and society.
As you know, medical research organizations such as the Society for
Investigative Dermatology work closely with patient support and
advocacy groups. We are pleased to say for many years we have worked
with the Coalition of Skin Diseases for Skin Disease Research. The many
organizations that participate in the Coalition have been the best
possible advocates for increased funding, as they understand that
unless major research efforts are undertaken, advances in understanding
and improvements in the health of patients will not occur. Every year,
we participate with these organizations in advocating increased funding
for the NIH and NIAMS. We want to reiterate how deeply grateful we are
for your leadership and that of the subcommittee on medical research
matters, which means so much for the health of the people in our
nation.
I will be pleased to answer any questions you may have.
______
Prepared Statement of the Society for Women's Health Research and the
Women's Health Research Coalition
On the behalf of the Society for Women's Health Research and the
Women's Health Research Coalition, we are pleased to submit testimony
in support of increased funding for biomedical research, and more
specifically women's health research.
The Society is the only national non-profit women's health
organization whose mission is to improve the health of women through
research, education, and advocacy. Founded in 1990, the Society brought
to national attention the need for the appropriate inclusion of women
in major medical research studies and the need for more information
about conditions affecting women disproportionately, predominately, or
differently than men.
The Coalition was created by the Society in 1999 as a way to
strengthen our grassroots advocacy with scientists and researchers and
clinicians from across the country who are concerned and committed to
improving women's health research. The Coalition now has more than 620
members from across the country, including leaders within the
scientific community and medical researchers from many of the country's
leading universities and medical centers, directors from various
Centers of Excellence on Women's Health as well as leading voluntary
health associations, and pharmaceutical and biotechnology companies.
The Society and the Coalition are committed to advancing the health
status of women through the discovery of new and useful scientific
knowledge. We believe that sustained funding for the women's health
research programs that are conducted across the federal research
agencies is necessary if we are to accommodate the health needs of the
population and advance the nation's research capability. We urge your
support for all these federal agencies and programs described below
that are working to meet these goals.
NATIONAL INSTITUTES OF HEALTH
From decoding the human genome to elucidating the scientific
components of human physiology, behavior, and disease, scientists are
unearthing exciting new discoveries which have the potential to make
our lives and the lives of our families longer, healthier, and safer.
The National Institutes of Health (NIH) has made this all possible by
conducting and supporting our nation's biomedical research. The world-
class NIH researchers, scientists, and programs are dedicated to
understanding how the human body works and to gain insight into
countless diseases and disorders. Due to robust investment and support
from Congress, NIH has made the United States the world leader in
medical research and has had a direct and significant impact on women
in science and on women's health research.
In planning for fiscal year 2006 funding for the NIH, the
Administration has proposed a 0.5 percent increase. This proposed
amount however will not keep pace with the Biomedical Research and
Development Price Index. It is vital that United States' commitment to
medical research be sustained in order not to erode the foundation
created over the past several years and to continue to build upon
promising research to enhance the quality of life for all Americans
touched by illness and disease.
Therefore, to continue the momentum of scientific advancement and
expedite the translation of research from the laboratory to the
patient, the Society encourages an increase of six percent (6 percent)
for the NIH, for a budget of at least $30 billion for fiscal year 2006.
In addition, we request that you strongly encourage the NIH to assure
that women's health research receives resources sufficient to meet the
health needs of Americans.
Scientists have long known of the anatomical differences between
men and women, but only within the past decade have they begun to
uncover significant biological and physiological differences. Sex
differences have been found everywhere from the composition of bone
matter and the experience of pain to the metabolism of certain drugs
and the rate of neurotransmitter synthesis in the brain. Sex-based
biology, the study of biological and physiological differences between
men and women, has revolutionized the way that the scientific community
views the sexes. The evidence is overwhelming, and as researchers
continue to find more and more biological differences, they are gaining
a greater understanding of the biological and physiological composition
of both sexes.
Much of what is known about sex differences is the result of
observational studies, or is descriptive evidence from studies that
were not designed to obtain a careful comparison between females and
males. The Society has long recognized that the inclusion of women in
study populations by itself was insufficient to address the inequities
in our knowledge of human biology and medicine, and that only by the
careful study of sex differences at all levels, from genes to behavior,
would science achieve the goal of optimal health care for both men and
women. This has given rise to sex-based biology.
Many sex differences are already present at birth, whereas others
develop later in life. These differences play an important role in
disease susceptibility, prevalence, time of onset and severity and are
evident in cancer, obesity, coronary heart disease, autoimmune, mental
health disorders, and other illnesses. Physiological and hormonal
fluctuations may also play a role in the rate of drug metabolism and
the effectiveness of response in females and males. This research needs
to be supported and encouraged. Congress recognizes this importance and
should support NIH at an appropriate level of funding and direct NIH to
continue and expand this research into sex-based biology.
OFFICE OF RESEARCH ON WOMEN'S HEALTH
The NIH Office of Research on Women's Health (ORWH) has a
fundamental role in improving women's health research at NIH. Within
the Office of the Director, ORWH advises the NIH Director on matters
relating to research on women's health; strengthens and enhances
research related to diseases, disorders, and conditions that affect
women; works to ensure that women are appropriately represented in
biomedical and behavioral research studies supported by NIH; and
develops opportunities for and supports recruitment, retention, re-
entry and advancement of women in biomedical careers. ORWH works in
partnership with the NIH Institutes and Centers to ensure that women's
health research is part of the scientific framework and improve
interdisciplinary research opportunities in women's health within NIH.
ORWH's ambitious agenda encompasses issues that go far beyond
reproductive capacity, cutting across and integrating scientific
disciplines, medical specialties, psychosocial and behavioral factors,
and environmental determinants in a multidisplinary and collaborative
approach. ORWH endeavors to address sex and gender perspectives of
women's health and women's health research, as well as differences
among special populations of women across the entire life span, from
birth through adolescence, reproductive years, menopausal years and the
more advanced, elderly years.
Two highly successful pioneering programs offered through ORWH that
are critical to further advancing women's health research are Building
Interdisciplinary Research Careers in Women's Health (BIRCWH) and
Specialized Centers of Research on Sex and Gender Factors Affecting
Women's Health (SCOR). These programs benefit both women's and men's
health through sex and gender research, interdisciplinary scientific
collaboration, and provide tremendously important support for young
investigators in a mentored environment.
The BIRCWH program 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. What makes BIRCWH so unique is that it bridges advanced
training with research independence, as well as across scientific
disciplines. Since 2000, 177 scholars have been trained in the 24
centers recording over 634 publications and 526 abstracts. The scholars
have secured 40 NIH grants and 70 awards from industry and
institutional sources.
The BIRCWH program offered at Magee Women's Hospital in Pittsburgh,
for example, has been able to successfully support the transition of
eight young faculty at the beginning of their careers. In the current
environment young faculty are expected to generate their income by
teaching, clinical care or grant support. However, being that they are
new, grant support for salary is unlikely and they end up with heavy
clinical and/or teaching load's--at just the time in their careers when
they should be perfecting their recently developed research skills. The
BIRCWH program allows young researchers at Magee to become established
and ready to apply for extramural funding and salary support. Magee has
also been able to provide additional mentoring, courses, and career
guidance to young investigators in women's health research.
The SCOR program was established in 2001 and now has 11 centers
throughout the country. ORWH, along with the National Institute of
Arthritis and Musculoskeletal and Skin Diseases, the National Institute
of Child Health and Human Development, the National Institute of
Diabetes and Digestive and Kidney Diseases, the National Institute on
Drug Abuse, the National Institute of Mental Health, and the National
Institute of Environmental Health Sciences, published a request for
applications to create these centers as a way to meet some of the
health promotion and disease prevention objectives outlined in the
``Healthy People 2010'' initiative, a Public Health Service-led
national activity for setting priority areas.
The objective of the SCOR program is to expedite interdisciplinary
development and application of new knowledge to human diseases, to
learn more about the causes of these diseases, and to foster improved
approaches to treatment and/or prevention. The program was designed to
complement other federally supported programs addressing women's health
issues such as BIRCWH.
The Institutes and Centers at the NIH, working with the ORWH, have
identified many research priority areas to be undertaken by SCORs. Some
of these include studying the influence of toxic environmental factors
on women's health; examining the sex and/or gender factors in acute and
chronic pain conditions or syndromes; undertaking studies to examine
kidney disorders, including the impact of pregnancy, diabetes, and
hypertension on renal function; studying urologic and urogynecologic
disorders; examining the biological and behavioral risk factors,
including sex and/or gender factors, in the development of mental
disorders such as addictive behaviors, schizophrenia, mood, anxiety,
and eating disorders; and the developmental biology of the vascular
system and the role of the fetal environment in programming lifelong
cardiovascular function.
We strongly encourage Congress to direct NIH to continue its
support of ORWH and its programs. This step is needed to assure that
advancements in discoveries of sex differences and, in particular,
women's health that are long overdue are not lost. From the discovery
and understanding of illness and diseases to the formulation of
treatments, pain relief and potential cures, knowledge base gained from
these important efforts must not be lost, as the benefits are of
critical importance to all Americans, men and women.
WOMEN'S HEALTH OFFICES WITHIN DEPARTMENT OF HEALTH AND HUMAN SERVICES
In addition to the ORWH, there are several other offices throughout
the Department of Health and Human Services (HHS) that enhance the
focus of the government on women's health research. Agencies with
offices, advisors or coordinators for women's health or women's health
research are the Department of HHS, the Food and Drug Administration,
the Centers for Disease Control and Prevention, the Agency for
Healthcare Quality and Research, the Indian Health Service, the
Substance Abuse and Mental Health Services Administration (SAMHSA), the
Health Resources and Services Administration, and the Centers for
Medicare and Medicaid Services. There is a vital need for these
agencies to be funded at levels adequate for them to perform their
assigned missions.
We are grateful for the Committee's continuing support for the work
of these entities. But with the exception of NIH and SAMSHA, none of
these offices, advisors, or coordinators is statutorily authorized.
Although an authorization does not guarantee an appropriation, having
one makes it easier. The Society and its Coalition are addressing that
issue in the appropriate venue through the Women's Health Office Act
(H.R. 949 and S. 569). But, within your jurisdiction, we ask that the
Committee Report clarify that Congress supports these offices and would
like to see them continued and strengthened in the coming fiscal year.
The focus on women's health within HHS has been of critical
importance to the advances made in women's health in the last decade.
As previously mentioned, prior to the early-mid 1990's biomedical
research had been firmly rooted in the male model--the belief that male
biology (outside of the reproductive system) was representative of the
species, and that where female biology differed from male biology it
was ``atypical'' or ``anomalous''. This led to a lack of knowledge
about female biology that has significantly compromised women's health.
It is the offices, advisors and coordinators in the agencies listed
above who played an essential role in trying to make up for time lost
in the last decade. We have only just scratched the surface of
understanding female biology. Now is the time to press ahead and make
those discoveries and educate women about their health and the
misinformation they have been given for years and these offices are
critical to the success of this effort.
There are many wonderful programs that we could identify from these
agencies but we would like to specifically mention two that have
instrumental programs and initiatives that are vital to women's health.
The HHS Office on Women's Health and the Agency for Healthcare Research
and Quality each have a unique mission but are unified in advancing
women's health research.
HHS OFFICE OF WOMEN'S HEALTH
The HHS Office of Women's Health is the government's champion and
focal point for women's health issues, and works to redress inequities
in research, health care services, and education that have historically
placed the health of women at risk. The HHS Office on Women's Health
coordinates women's health efforts in HHS to eliminate disparities in
health status and supports culturally sensitive educational programs
that encourage women to take personal responsibility for their own
health and wellness. A program initiated by the HHS Office on Women's
Health that is critical to women's health is the National Centers of
Excellence in Women's Health (CoEs). Developed in 1996, this program
offers a new model for university-based women's health care. Selected
on a competitive basis, the current twenty-one CoEs seek to improve the
health of all women across the lifespan through the integration of
comprehensive clinical health care, research, medical training,
community outreach and public education, and medical school faculty
leadership development.
Located in leading academic health centers across the United States
and Puerto Rico, these Centers are developing new models for women's
health care that are setting standards beyond what is traditionally
offered at hospital-sponsored women's clinical health centers. The CoEs
are able to reach a more diverse population of women, including more
women of color and women beyond their reproductive years. In addition,
the CoEs have a strong commitment to integrating research, education,
and clinical care than most traditional women's health centers.
A recent evaluation of the CoEs conducted by HHS Office of Women's
Health concluded that the CoEs provided comprehensive clinical
preventive services, served a broader cross-section of women, reached
underserved subpopulations, including minority and economically
compromised communities, produced higher levels of patient
satisfaction, and aided in mentoring more women in their professional
roles as clinicians and/or researchers. However, the report also
concluded that CoEs remain vulnerable to pressures including, obtaining
adequate funding and having to compete for scarce resources.
Coalition member and Director of the University of Illinois Chicago
National Center of Excellence in Women's Health Stacie Geller, Ph.D.,
strongly believes that her CoE has been instrumental in promoting
advancement and leadership opportunites for female researchers on
campus and beyond. In addition, the University of Illinois Chicago CoE
has improved healthcare for women with a ``one-stop shopping'' model
within the medical center by incorporating an adolescent clinic,
midlife practice, and a clinic designed to meet the needs of
perimenopausal and postmenopausal women in the same facility. The CoE
also works to reduce barriers to health care for underserved urban
women, and partners with surrounding communities to disseminate health
information.
Considering the advancements that have been made and those that
still need to be achieved, we urge Congress to provide an increase of
$1.5 million for the HHS Office on Women's Health to allow it to
continue to sustain and expand the National Centers of Excellence in
Women's Health.
AGENCY FOR HEALTHCARE AND RESEARCH QUALITY
The Agency for Healthcare Research and Quality (AHRQ) is the lead
Public Health Service agency focused on health care quality, including
coordination of all federal quality improvement efforts and health
services research. AHRQ's work serves as a catalyst for change by
promoting the results of research findings and incorporating those
findings into improvements in the delivery and financing of health
care. This important information provided by AHRQ is brought to the
attention of policymakers, health care providers, and consumers who can
make a difference in the quality of health care women receive.
Congress has had an active role in the Agency's work, providing
funding while adding responsibilities. This has allowed AHRQ to enhance
its research on how to: reduce deaths from medical errors; improve
access and quality of care; promote evidence based health care;
eliminate racial and ethnic disparities; compile the first national
report on quality; and assist in improving emergency responsiveness.
AHRQ has a valuable role in improving health care for women.
Through AHRQ's research projects and findings, lives have been saved
and underserved populations have been treated. For example, women
treated in emergency rooms are less likely to receive life-saving
medication for a heart attack. AHRQ funded the development of two
software tools, now standard features on hospital electrocardiograph
machines that have improved diagnostic accuracy and dramatically
increased the timely use of ``clot-dissolving'' medications in women
having heart attacks.
While AHRQ has made great strides in women's health research, the
Administration's budget for fiscal year 2006 could threaten life-saving
research. If a budget request of $319 million were enacted, AHRQ would
be flat funded at fiscal year 2005 levels. In reality, AHRQ's funding
has been kept flat for two years as the recent $15 million increase is
dedicated to a specific project. Flat funding prior to application of
taps by Congress seriously jeopardizes the research and quality
improvement programs that Congress demands or mandates from AHRQ.
Congress through the Medicare Prescription Drug, Improvement, and
Modernization Act of 2003 directed ARHQ to research comparative
effectiveness of drugs and other products but provided no appropriated
funds in fiscal year 2003 or 2004. In fiscal year 2005, AHRQ received
$15 million to conduct such extensive and important research, far less
than is needed to do the project.
It is important that Congress continues its support for AHRQ by
increasing their funding to $443 million for fiscal year 2006. This
will ensure that adequate resources are available for high priority
research, including women's health care, gender-based analyses,
Medicare, and health disparities.
In conclusion, Mr. Chairman, we thank you and this Committee for
its strong record of support for medical and health services research
and its unwavering commitment to the health of the nation through its
support of peer-reviewed research. We look forward to continuing to
work with you to build a healthier future for all Americans.
______
Prepared Statement of the Upper County Branch of the Montgomery County,
Maryland Stroke Club
A STROKE SURVIVOR: A PERSONAL STORY
My name is Susan Emery. I am the presiding officer of the Upper
County Branch of the Montgomery County Stroke Club and I am a stroke
survivor.
Our club conducts education and support activities for stroke
survivors, their family members, and caregivers. We serve people in the
Maryland suburbs of Washington, D.C., and are fortunate to be in the
same county as the National Institutes of Health. We have benefited on
many occasions by the participation of NIH staff members in our
membership meetings. They have been generous in sharing with us
information about their research into stroke prevention and treatment.
On December 26, 1965 at the age of 9, I was playing a new game with
my brother and a few friends at the kitchen table. That is the last
thing that I remember. I was unconscious for the next two days. My
mother first learned, incorrectly, that I had spinal meningitis. I was
transferred to another hospital where my mother was told that I had
little chance of survival. Yet, I am here, more than 37 years later,
and I have survived a stroke.
People seldom associate strokes with children. These strokes are
rare, but they do happen. There are about three cases of stroke per
year in every 100,000 children under age 14. One of the difficulties in
dealing with strokes in children is getting the right diagnosis
quickly. There are often delays in diagnosis of childhood stroke.
I spent 2 weeks in the hospital and the following 4 months in
intensive physical therapy. My 10th birthday was spent in the hospital,
and I have a picture in my photo album of myself with my mother and a
new friend. My right eye is turned down, my mouth is turned down, but I
am still smiling. During the 4 months in therapy at Holy Cross in
Detroit, I learned the basics: how to walk, how to talk, and how to
move the fingers on my right hand. My mother followed the doctor's
instructions and sent me back to school very quickly, where classmates
helped me button and unbutton my coat and carry my books, and teachers
taped papers to the desk so I could learn to write again. I survived
that 4 months, and would never wish to repeat it.
I have been in therapy six times in my life. I need to tell you
about the one time that was the most important to my family. I was 26
years old and had just had my first child. I kept her safe, for I knew
my limitations. I always used my left hand to support her. But when she
was 6 months old, she got to be a little heavy, and twice, as I was
putting her on the floor to change her diaper, my right hand slipped
from under her buttocks. She fell only inches in both cases and did not
even notice. But I noticed. I went in for 2 or 3 months of therapy
close to Denver, Colorado, where I was living at the time. Here for the
first time, they helped my right hand and arm dexterity through
occupational therapy. I also learned that I had aphasia--the inability
to speak, write or understand spoken or written language because of
brain injury--because I called things like cornucopias, unicorns
instead of fruit baskets. Instead of the word being the same, I picked
a word that sounded the same. These therapists in Colorado worked with
my mind and my body and I will forever be in their debt.
Close to 15 years ago, I made a new life for myself in Maryland.
Here, I have been an outpatient at the National Rehabilitation Hospital
three times: once for my right foot, once for my Achilles tendon and
once for my right knee. I have seen numerous physiatrists, all of whom
are excellent in their field. I have also seen my fair share of
therapists. Since I have had therapy off and on for most of my life, I
can honestly say that the first few times you go in to see a therapist,
you will come out hurting more than when you went in. But in the long
run, they help tremendously.
On a work related note, I received a Bachelor of Science in 1978
from Michigan State University in Computer Science and worked for 12
years in the field. I started working in the telecommunications
industry in 1990, and got a Master of Science from the University of
Maryland, University College in Telecommunications Management. I now
work for ITT Industries as a senior engineer on a contract supporting
the Federal Aviation Administration's leased telecommunications
activities, and have worked there for more than 6 years. I have done
more than survive. I have become a productive member of society.
Stroke research has changed my life. Without the research carried
out 40 to 50 years ago, I would not have benefited from electric shock
therapy that made me understand the muscles that moved my fingers.
Without research done 30 years ago, I may not have been able to
understand how to exercise my hand for dexterity. Without research
performed 10 years ago, the people around me would not understand that
they need to get me to the hospital quickly if ever I have another
stroke. Without current support, researchers may never understand how
to stop strokes before they happen or how to make current stroke
survivors live healthier lives.
Stroke remains America's No. 3 killer and a major cause of
permanent disability. An estimated 5.4 million Americans live with the
consequences of stroke and about 1 in 4 is permanently disabled. Yet,
stroke research continues to receive a mere 1 percent of the National
Institutes of Health budget. I strongly urge you to significantly
increase funding for the National Institutes of Health-supported stroke
research, particularly for National Institute of Neurological Disorders
and Stroke-supported stroke research. NIH stroke research is essential
to prevent strokes from happening to children and adults in the first
place, and to advance recovery and rehabilitation of those who survive
this potentially devastating illness.
______
DEPARTMENT OF EDUCATION
Prepared Statement of the Alamo Navajo School Board, Inc.
The Alamo Navajo School Board, Inc. operates under resolution from
the Alamo Navajo Community and from the Navajo Nation and was organized
within the Alamo Navajo chapter community to establish and operate
Federal and State programs that provide education, health and community
development services to the people of Alamo under contracts, grants or
cooperative agreements. We are responsible for operation of nearly all
federal programs that serve the 2,000 Navajo people who live on the
Alamo Reservation. Our 10-square mile reservation is isolated in south-
central New Mexico, 250 miles from the Big Navajo Reservation, thus it
is critical that we provide local services to persons living on the
Alamo Reservation. On an annual basis, we operate over $13 million of
federal and state supported programs.
In summary our recommendations for the fiscal year 2006 Labor-HHS-
Education and Related Agencies budget are:
--Reject the Administrations proposal to de-fund the Perkins
vocational program and provide at least a modest increase;
--Direct the Department of Education to allow BIA-funded schools to
apply directly for Library Literacy Grant funding;
--Reject the Administration's proposal to de-fund the Safe and Drug
Free schools program and provide at least a modest increase;
--Allow Indian Head Start program to have the flexibly to allocate
funds between their Early and regular Head Start programs;
--Support a four percent tribal allocation under the Head Start
Program;
--Increase funding for the Workforce Investment Act;
--Reject the proposal to consolidate Supplemental Youth Services
funding into a block grant which would probably cause the loss
of Indian SYS funding;
--Reject the Administration's proposals to reallocate and/or rescind
$92 million of already-appropriated fiscal year 2006 CPB funds
and to end forward funding for the CPB.
--Support continued and increased CPB support for Native radio.
VOCATIONAL EDUCATION
We operate a very successful and much-needed program funded through
the Carl Perkins Vocational and Applied Technology Act and we strongly
oppose the Administration's proposal to totally de-fund the Carl
Perkins vocational education program. We are pleased that the House and
Senate authorizing committees are proceeding with reauthorizing the
Perkins Act, which sends a clear signal to the White House that
Congress finds this a valuable program that should be continued.
We have been administering a Section 116 Perkins Act grant under
which we are successfully helping Indian people access and complete
postsecondary education. Our project is named Access-Retention-
Completion (ARC) We are working toward development of a Navajo
professional workforce that will enable people, if they so choose, to
fill job needs on the Alamo Navajo Reservation that must now be filled
by persons from outside the community. Under ARC, our students are able
to gain academic and technical skills both on and off the reservation,
via distance learning and on-site classes. The Alamo Navajo School
Board has articulation agreements with several postsecondary
institutions to offer classes both on and off reservation. We are able
to help students with transportation to off-reservation education sites
through the use of our 15-passenger van. We are making education more
accessible and affordable for postsecondary students who are also
parents. Our child care program provides pre-natal to early head start
child care. We also have an after school tutoring program for older
school-age children. Finally, we are providing support services to all
postsecondary students through counseling, placement, advisement and
facilitation.
While we feel very good about the development of our Access-
Retention-Completion project, it takes more than four years to fully
develop this multifaceted program. We are currently serving 83
students, with an 80 percent completion rate for on-site classes and
100 percent completion rate for students taking off-reservation
classes. Our placement rate is 80 percent for on-site and 90 percent
for off-reservation. Our students are about evenly split between on and
off reservation programs. We also believe that our ARC project has the
very real potential to be a model for other isolated communities--both
Indian and non-Indian--and having several more years of assured funding
would bring the necessary additional experience to serve as a model
program.
IMPROVING LITERACY THROUGH SCHOOL LIBRARIES
The Alamo-Navajo School Board is excluded from applying for these
much needed funds that would, as Congress intended, enable us to update
our school library materials and media center equipment and assure an
appropriately credentialed media specialist is on hand to assist our
students. The Department of Education has taken the position that
because the BIA-funded schools receive a 0.5 percent set-aside from the
annual appropriations for this program, they cannot apply for
discretionary grants as an LEA (local education agency) under the
program operated by the Department. The average grant award under the
Department's discretionary grant program ranges from $150,000 to
$300,000.
In fiscal year 2005, the Department of Education transferred
$99,211 to the BIA for the use of the BIA-funded schools. The BIA,
however, determined that instead of making the funds available--by
discretionary or formula grant--to all of the 184 schools in the BIA
school system, the entire fiscal year 2005 amount would be allocated to
only two schools. The schools selected were on the BIA Center for
School Improvement list for proposed restructuring, meaning they had
not met adequate yearly progress (as required by the No Child Left
Behind Act) despite earlier intervention.
We understand that poorly performing schools require much
assistance to enable them to help their students achieve academic
success, and it is unlikely that the entire $99,000 would be sufficient
to correct the deficiencies experienced by just one BIA-funded school.
Nonetheless, it is unfair to all BIA schools if the Department of
Education excludes BIA-funded schools from the discretionary program
and the BIA adopts a policy to restrict funds made available to a
select few. We urge the Congress to direct the Department of Education
to reconsider its exclusionary practice and allow the BIA-funded
schools to apply directly to the Department for the Library Literacy
grant funding.
SAFE AND DRUG FREE SCHOOLS AND COMMUNITIES
The Alamo-Navajo School Board strongly opposes the Administration's
proposal to eliminate funding for the Safe and Drug Free Schools State
Grants program ($437.4 million in fiscal year 2005). Under the 1
percent set-aside for BIA-funded schools, we received $29,000 that
partially funded a school-home liaison who works directly with parents
and community on matters identified by the school that would aid in
ensuring a healthy learning environment.
As you are no doubt aware, alcohol and drug-related illnesses and
crime levels in Native American communities greatly exceed the
mainstream populations. By tapping all available sources of funds, we
seek to provide our students the drug prevention and school safety
programs that will help them develop the life skills that may enable
them to live better, healthier lives. We urge Congress to reject the
Administration's proposal to eliminate this valuable program and
instead provide at least a modest increase.
HEAD START
The American Indian Head Start and Early Head Start programs
receive a less than 3 percent share of the 13 percent set-aside for
Indian, migrant, territorial, children with disabilities programs. In
fiscal year 2004, that translated to $161.6 million for Indian Head
Start (ages 3-5 years) and $27.5 million for Indian Early Head Start
(ages 0-3 years), which served a combined total of nearly 24,000
children. Under the Administration's proposal, our programs would
receive none of the requested $45 million increase since all of it is
targeted for pilot projects whereby states would consolidate Head Start
and other state children's programs.
Although level funding in these constrained budgetary times may be
viewed as a success, programs such as ours which are located in very
rural areas are faced with rising costs that are greater than those
located in more metropolitan areas, i.e., fuel costs for
transportation, food, staff training. Level funding also does not
address the increasing costs related to higher salaries for staff who
achieve the high quality staff requirements of the program nor the
unfunded mandate to install small child restraints in program vehicles
(which cost $6,000 but was not in our budget nor were we provided
reimbursement from the national Head Start office).
Further, with the myriad and increasingly stringent requirements,
small programs such as ours are losing the flexibility to structure our
services to best meet the needs of our children. We need to be able to
structure our Early Head Start and Head Start programs to the changing
dynamics of our community yet current Head Start policies restrict us
from being able to allocate our program funds to provide the services
in accordance with the demographic changes. For instance, this year our
Early Head Start has a waiting list which could result in an additional
classroom of students while our enrollment for the Head Start program
is less than anticipated. The logical reaction would be to respond to
the need and utilize program funds to establish the necessary
additional Early Head Start class but we were informed by the Head
Start Grant office that even though we receive our Early Head Start/
Head Start funds in one grant document, we must expend the monies under
two separate budgets. Therefore, a number of Early Head Start eligible
children in our community are not being served since there are no other
early education programs available in our isolated area.
We ask that when Congress takes up the reauthorization of the Head
Start Act, that (1) the Indian Head Start set-aside be increased from
the present 2.8 percent to no less than 4 percent; and (2) provide
program flexibility so that Indian Early Head Start/Head Start grant
recipients may allocate funds between their Early and regular Head
Start programs in the manner that best meet the needs of the population
served.
WORKFORCE INVESTMENT ACT
The Alamo Navajo School Board receives funding under the Workforce
Investment Act's Section 116 Program and the Supplemental Youth
Services program. The Administration has proposed level funding ($54.2
million) for the Section 116 program which provides grants to Indian
Tribes, Urban Indians, Hawaiians and Samoans. This program has been
flat funded or years and we support the National Congress of American
Indians request of $75 million for the Section 116 program.
We oppose the Administration's proposal that the Supplemental Youth
Services Program (of which the tribes receive $1.5 percent allocation,
or about $15 million annually) be combined with three other streams of
money and put into a block grant, with no obvious guarantee that the
tribal money would be preserved. We are pleased that the House bill
reauthorizing the WIA (H.R. 27) did not go along with this
consolidation proposal and urge that the Appropriations Committee
likewise reject this proposal and to provide an increase for
Supplemental Youth Services which has been flat funded for years.
CORPORATION FOR PUBLIC BROADCASTING
The Alamo Navajo School Board is the licensee for a community radio
station--KABR-AM in Magdalena, NM--which receives a modest amount of
funding from CPB. We commend CPB for increasing funding for rural sole
source radio stations--of which we are one. We also appreciate that CPB
has provided start-up funds for a Center for Native American Radio
which is to provide technical and other service to Indian radio
stations. Our radio signal reaches approximately 13,000 people,
including the Alamo population of 2,072. Of the 432 Alamo households,
only 25 percent have telephones, and there is no cell phone service. So
you can see what an important role our community radio station plays at
Alamo Navajo.
There are currently 33 Indian-owned radio stations--all
noncommercial--in thirteen states. Most are licensed to nonprofit
organizations. We ask for this Committee's continued support of Native
radio.
We are extremely concerned about the Administration's proposal to
rescind $10 million and divert an additional $82 million of already
appropriated fiscal year 2006 CPB funds to digital conversion and
satellite interconnection. Such a rescission/diversion of funds would
be a terrible setback for our station, which already runs on a shoe
string. Should Congress approve the Administration's request and if it
were applied across-the-board, we would be faced with a 25 percent
reduction of CPB funds.
We ask Congress to again reject--as you have done the past four
years--the Administration's proposal that the advance funding for CPB
be eliminated.
Thank you for your consideration of concerns and recommendations of
the Alamo Navajo School Board.
______
Prepared Statement of the American Association of Colleges of Nursing
The American Association of Colleges of Nursing (AACN) respectfully
submits this statement highlighting funding priorities for nursing
education and research programs in fiscal year 2006. AACN represents
over 580 senior colleges and universities with baccalaureate and
graduate nursing programs, and over 190,000 students and 10,000 faculty
members. These institutions are responsible for educating about half of
our nation's registered nurses (RNs) and all of the nurse faculty and
researchers. Nursing represents the largest health profession in the
nation, with approximately 2.7 million dedicated, trusted professionals
delivering primary, acute, and chronic care to millions of Americans
daily across the spectrum of settings.
THE NATIONWIDE NURSING SHORTAGE
Our country continues to be plagued by a shortage of nurses that is
only expected to intensify in the future. While AACN is cognizant of
the difficult budget environment in which the Subcommittee and the
entire Congress must operate, patient safety is compromised without a
sufficient number of RNs. Indeed, the American College of Healthcare
Executives reported in 2004 that 72 percent of hospitals were
experiencing a nursing shortage. Furthermore, the Joint Commission on
Accreditation of Healthcare Organizations (JCAHO) found in 2002 that
the nursing shortage contributes to nearly a quarter of all unexpected
incidents that kill or injure hospitalized patients. Since nurses
comprise the largest component of hospital staffs, shortages also
result in emergency room overcrowding and diversions, increased wait
time for or outright cancellation of surgeries, discontinued patient
care programs or reduced service hours, and delayed discharges.
The U.S. Bureau of Labor Statistics (BLS) has projected that by
2012, our nation will need an additional 1.1 million new and
replacement registered nurses. Despite nursing being identified by BLS
as the fastest growing occupation, according to the Health Resources
and Services Administration (HRSA), the United States still will be
roughly 800,000 nurses short in 2020, unless there is a significant and
sustained increase in the number of nurses graduating each year and
entering the workforce. There are nursing vacancies throughout all
sectors of health care, including long-term care, home care, and public
health. These alarming predictions are coupled with little change in
the multitude of contributing factors such as the aging of America's
population, the aging nurse workforce, high numbers of RN retirements,
and the increasing demand for more intensive health care services by
chronically ill, medically complex patients. It is clear that federal
support must continue to play a critical role in the nation's effort to
address the nursing shortage.
NURSING WORKFORCE DEVELOPMENT
Acknowledging the situation, Congress passed The Nurse Reinvestment
Act of 2002. This legislation reauthorized and expanded Nursing
Workforce Development programs, administered by HRSA under Title VIII
of the Public Health Service Act, to address the inadequate supply and
distribution of RNs across the country. These authorities fund nursing
education and retention programs as well as support individual students
in their nursing studies. The seven Title VIII grant and student
programs stimulate innovation in nursing practice and bolster nursing
education throughout the continuum, from entry-level preparation
through graduate study. Thoughtful and well-written authorities, Title
VIII programs are the largest source of federal funding for nursing
education. In fiscal year 2004, these programs provided loan and
scholarship support to over 28,000 student nurses.
Given the demonstrated need for these outstanding programs, past
funding levels have been insufficient, receiving only $150.67 million
in fiscal year 2005. AACN respectfully requests $175 million for Title
VIII Nursing Workforce Development in fiscal year 2006, an additional
$24.33 million over fiscal year 2005. New monies would support these
crucial Title VIII programs designed to help resolve the nursing
shortage through education, recruitment, and retention efforts for the
nursing workforce. During the last serious nursing shortage in 1974,
Congress appropriated $153 million for nursing education programs.
Translated into today's dollars, that appropriation would total $592
million, almost 4 times the current level.
COLLEGES OF NURSING RESPOND
The approximately 1,500 schools of nursing nationwide have been
working diligently to expand enrollments. In fact, AACN found in a
recent study that enrollments increased in 2004 by 15.5 percent for
entry-level baccalaureate, master's, and doctoral nursing programs,
over the 9.1 percent increase experienced in 2003. These increases are
attributed to intensive marketing efforts by the private sector,
public-private partnerships providing additional resources to expand
capacity of nursing programs, and state legislation targeting funds
towards nursing scholarships and loan repayment.
While impressive, these increases still cannot meet the demand. In
the November 2003 issue of Health Affairs, Dr. Peter Buerhaus reported
that nursing school enrollments would have to increase by at least 40
percent annually just to replace those nurses who retire, due to
declining numbers of young RNs over the past 20 years. It is important
to note that in spite of protracted efforts by colleges nationwide,
AACN found that enrollments have increased only by a total of 53.5
percent over the last 5 years in entry-level baccalaureate programs.
In spite of increasing enrollments and the demonstrated need for
RNs, U.S. colleges of nursing must still turn away eligible students.
In 2004, AACN found that at least 32,797 qualified applicants were
turned away, up sharply from over 18,000 in 2003. These students were
turned away due to insufficient numbers of faculty, clinical sites,
classroom space, clinical preceptors, and budget constraints. Over 75
percent of the schools surveyed cited the faculty shortage as the
primary barrier to increasing enrollments. Some of these qualified
students are being placed on waiting lists that may be as long as 2
years.
BOTTLENECK: THE COEXISTING FACULTY SHORTAGE
AACN strongly believes that the most effective strategy for the
resolution of the nursing shortage is addressing the underlying faculty
shortage. HRSA reported in 2000 that just 9.6 percent of the RN
workforce holds master's degrees, while only 0.6 percent holds
doctorates. AACN found that more than half, 53.4 percent, of the nurse
faculty vacancies in 2004 were for faculty positions requiring the
doctoral degree. In 2003 AACN reported there were 10,500 full-time
master's and doctorally prepared faculty teaching in baccalaureate and
graduate nursing programs. Projections through 2012 show that the
faculty pool will shrink by at least 2,000 as compared to 2003, even
after accounting for retirements, resignations, and additional
entrants. Note that these figures do not take into account the need for
faculty in new or expanded programs, but represent only present
staffing requirements. If the faculty vacancy rate holds steady, it is
expected the deficit of nurse faculty will swell to over 2,600 unfilled
positions in 2012.
The situation is only expected to worsen with time. Faculty age
continues to climb, narrowing the number of productive years nurse
educators can teach. Significant numbers of faculty are expected to
retire in the coming years, as the average age is 52. Likewise, there
are not enough candidates in the pipeline to take their places. For
example, an average of 410 individuals are awarded doctoral degrees in
nursing each year, but almost a quarter, 23 percent, take jobs outside
of academic nursing. Higher compensation in clinical and private sector
settings lures current and potential nurse educators away from the
classroom. The average salary of a nurse practitioner in an emergency
department was $80,697, according to the 2003 National Salary Survey of
Nurse Practitioners. In contrast, AACN found that the average salary
for a nurse faculty member was $60,357 in 2003. Without sufficient
nurse faculty, schools of nursing will not be able to expand their
capacities to educate new generations of the nurses.
REVERSING THE TREND: THE NURSE FACULTY LOAN PROGRAM
This trend can be reversed--with your help. Additional
appropriations for the Nurse Faculty Loan Program, Section 846A of
Title VIII, will provide targeted assistance. Designed to help increase
the number of nurse faculty, grants are provided to colleges of nursing
in order to create a loan fund. To be eligible for these loans,
students must be pursuing either a master's or doctoral degree on a
full-time basis. Loan recipients will have up to 85 percent of their
educational loans cancelled over a four-year period, if they agree to
teach at a school of nursing. The loan is cancelled at a rate of 20
percent for the first three years, increasing to 25 percent in the
final year. A student may receive a maximum loan award of $30,000 per
academic year for tuition, books, fees, laboratory expenses, and other
reasonable educational costs. In fiscal year 2004, 61 grants were made
to schools of nursing, which in turn supported a projected 419 future
nurse faculty members. In fiscal year 2005, $4.83 million was
appropriated.
For example, if the current funding was doubled to almost $10
million, based on this year's projections, colleges of nursing could
educate over 800 future faculty. Though the student to faculty ratios
vary by state, a common average is one faculty member for every ten
students. Then one could surmise from that estimate that the doubled
funding could help to educate over 800,000 future nurses.
OTHER SOURCES OF RELIEF
AACN would like to highlight the following programs in addition to
the Nurse Faculty Loan Program: the Advanced Education Nursing program,
the Workforce Diversity program, and the Nurse Education, Practice, and
Retention program.
The Advanced Education Nursing program supports the majority of
colleges of nursing that prepare graduate-level nurses to be primary
care providers, some of whom become faculty. Receiving $58.17 million
in fiscal year 2005, this grant program helps schools of nursing,
academic health centers, and other nonprofit entities improve the
education and practice of nurse practitioners, nurse-midwives, nurse
anesthetists, nurse educators, nurse administrators, public health
nurses, and clinical nurse specialists. Out of the 149 applications
received for this program in fiscal year 2004, 82 new grants were
awarded to institutions and 75 previous awarded grants were continued.
In addition, 408 schools of nursing received traineeship grants, which
in turn directly supported 8,925 individual student nurses.
The health system's increasing demand for primary care, increased
utilization of case management--particularly for chronic illnesses,
prevention and cost-efficiency, and a shortage of physicians are
driving the nation's need for nurse practitioners, certified nurse-
midwives, and other RNs with graduate education and advanced clinical
skills, known as advanced practice nurses (APNs). Mounting studies
demonstrate the quality of APN care is at least equal to, and at times
better than comparable physician services rendered by physicians, and
often at lower cost. This is especially important, as the 78 million
Baby Boomers age, their demand for health care services will skyrocket.
AARP reported that the rate of physician office visits by those 65 and
older jumped 22 percent from 1985 to 1999.
Workforce Diversity grants prepare disadvantaged students to become
nurses. As the United States becomes ever more heterogeneous, it is
imperative that the composition of our nursing workforce mirrors this
shift. According to the U.S. Census Bureau, roughly 30 percent of the
population was reported as a racial or ethnic minority in 2000, but by
2050 that percentage will jump to over 52 percent. This program awards
grants to schools of nursing and other entities seeking to increase
access to nursing education for disadvantaged students, including
racial and ethnic minorities under-represented among RNs. The program
provides scholarships or stipends, pre-entry preparation, and retention
activities to enable students to complete their nursing education. In
fiscal year 2004, 144 applications were submitted, from those 27 new
grants were awarded and 35 previously awarded grants were continued.
Under the scholarship program alone, 473 students each received $7,000
scholarships. Workforce Diversity received $16.27 million in fiscal
year 2005.
The Nurse Education, Practice and Retention program helps schools
of nursing, academic health centers, nurse-managed health centers,
state and local governments, and health care facilities strengthen
programs that provide nursing education, facilitate innovations in
nursing practice, and retention of the nursing workforce. Education
grants are made to enable schools to expand enrollments in
baccalaureate nursing programs, develop internship and residency
programs, and provide for new technology. Practice grants are made to
expand arrangements in non-institutional settings to improve primary
health care in medically underserved communities, provide care for
underserved populations, enhance practitioner skills, and develop
cultural competencies. Retention grants are made to the Career Ladder
program, which supports efforts to assist people to obtain the
necessary education to either enter the profession or to advance within
it; enhance patient care delivery systems through incorporation of best
practices, and improved communication. In fiscal year 2004, 336
applications were submitted, from those, 40 new grants and 85
continuation grants were awarded. Nurse Education, Practice, and
Retention received a total of $36.48 million in fiscal year 2005.
NATIONAL INSTITUTE OF NURSING RESEARCH
One of the 27 Institutes and Centers at the National Institutes of
Health (NIH), the efforts of the National Institute of Nursing Research
(NINR) improve patient care and foster advances in nursing and other
health professions' practice. These practices must be must constantly
updated and validated based on rigorous, peer-reviewed research. The
outcomes-based findings derived from NINR research are important to the
future of the health care system and its ability to deliver safe, cost-
effective, and high quality care. Through grants, research training,
and interdisciplinary 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 in those with chronic illness, and care for individuals at the
end of life. To advance this research, AACN requests a funding level of
$160 million in fiscal year 2006, an additional $21.91 million over the
$138.09 million NINR received in fiscal year 2005.
NINR Addresses the Need for Translational and Clinical Research
NINR emphasizes translational research, the means by which basic
findings relating to behavior, molecules, and genes are tested in the
clinical setting and translated into innovative medical practices and
improvements in public health. This effort is incorporated into the NIH
Roadmap for Medical Research. Under the framework of the Roadmap
Initiative, NINR and nurse researchers are addressing the development
of new interdisciplinary research teams and enhanced clinical research
to move the overall NIH portfolio of social, behavioral, and medical
research forward in this coordinated and cohesive effort.
NINR Addresses the Shortage of Nurse Researchers and Faculty
NINR allocates 8 percent of its budget, a high proportion when
compared to other NIH institutes, to research training to help develop
the pool of nurse researchers. In fiscal year 2004, NINR training
dollars supported 88 individual researchers and provided 186
institutional awards, which in turn supported a number of nurse
researchers at each site. Since nurse researchers often serve as
faculty members for colleges of nursing, they are actively educating
our next generation of RNs.
AGENCY FOR HEALTHCARE RESEARCH AND QUALITY
While NIH supports biomedical research that improves health care by
focusing on disease cause, cure, and prevention; the Agency for
Healthcare Research and Quality (AHRQ) supports research from a systems
perspective, collecting evidence-based information on health care
outcomes. AHRQ research findings are used by patients, clinicians,
health system decision makers, and public policymakers to guide
healthcare delivery systems and patient care. The research supported by
AHRQ not only improves the quality of health care services, but also
helps people make more informed decisions about their healthcare. AACN
joins the Friends of AHRQ in recommending a funding level of $440
million for fiscal year 2006, an additional $121 million over the
fiscal year 2005 level of $318.7 million.
Health Systems Research at AHRQ Addresses Nurses' Role in Patient
Safety
AHRQ research has demonstrated that inefficient work processes,
overwhelming work loads, extended work hours, and poor workplace
designs create obstacles to providing patients safe, cost-effective,
and high quality health care. The New England Journal of Medicine
published a study of over 6 million patients in May, 2002 that found
hospitalized patients had better outcomes when the majority of their
nursing care was provided by RNs. Decreased hours of RN care, stemming
from the nursing shortage, correlated with longer hospital stays,
increased incidence of urinary tract infections and gastrointestinal
bleeding, as well higher rates of pneumonia, shock, and cardiac arrest.
When patients received additional hours of RN care, the death rates
dropped for pneumonia, shock or cardiac arrest, upper gastrointestinal
bleeding, sepsis, and deep venous thrombosis.
AHRQ Research Demonstrates that Nurse Education Affects Patient
Outcomes
Another AHRQ study found that by employing a greater proportion of
more highly educated nurses reduced the mortality and failure to rescue
rates from life threatening complications. This extensive study in the
September 2003 issue of the Journal of the American Medical Association
found that surgical patients have a ``substantial survival advantage''
if treated in hospitals with higher proportions of nurses educated at
the baccalaureate or higher degree level. In hospitals, a 10 percent
increase in the proportion of nurses holding BSN degrees decreased the
risk of patient death and failure to rescue by 5 percent.
CONCLUSION
Nurses can no longer simply give care to a patient at the bedside.
They must evaluate research that promotes evidence-based practice and
utilize technical innovations to provide quality patient care. To
achieve this level of excellence, AACN recognizes that our nation
desperately needs a dedicated, long-term vision for educating the new
nursing workforce. Strategies must encompass state support, public-
private sector initiatives, and increased federal funding for nursing
education and research. Title VIII Nursing Workforce Development
programs enable colleges of nursing to innovate and prepare students
for the realities of caring for our nation's diverse population in many
health care settings across the lifespan. NINR, NIH, and AHRQ provide
the research that supports the evidence base for safe practice and
quality care delivery. We ask the Subcommittee to graciously consider
our appropriations requests for fiscal year 2006.
______
Prepared Statement of the American Chemical Society
Chairman Specter and other members of the Labor, Health and Human
Services and Education Subcommittee, I appreciate the opportunity to
submit written testimony on behalf of the American Chemical Society.
The American Chemical Society (ACS) is the world's largest scientific
society with over 159,000 members. We represent individual chemists and
engineers in academia, industry, and government.
Mr. Chairman, the ACS recognizes that ensuring the continued
economic supremacy and homeland security of this nation depends upon
maintaining our global technological leadership. This leadership has
resulted from the ready availability of a domestic workforce of highly
trained scientists, technicians, engineers, and mathematicians (the
STEM workforce). But today's high school students are not performing
well in math and science overall, and a decreasing number of American
students are pursuing college degrees in STEM fields. At the elementary
school level, the recent PISA test showed that America's 15 year-olds
perform below average in mathematics problem solving compared to their
peers in other developed countries.
Thanks to your leadership, the Department of Education budget has
increasingly reflected a commitment to remedy this situation through
investments in a number of STEM initiatives from the K-12 to
postsecondary level. These programs must continue to receive strong
support in order to ensure a globally competitive U.S. workforce.
Central to this quest is ensuring the supply of qualified K-12
science and mathematics teachers. As you know, the Math and Science
Partnerships, authorized in the No Child Left Behind Act at an
increasing annual level to reach $450 million by fiscal year 2007, are
the sole source of dedicated DoEd K-12 math and science funding. This
program supports valuable long-term, content-based continuing education
for math and science teachers--the type of training that research shows
is most effective in improving student achievement.
Chairman Specter, we greatly appreciate your past support of the
Partnership program which has grown from $12.5 million in fiscal year
2002 to $180 million in fiscal year 2005. We applaud you for this and
urge you to work toward the authorized level by funding the program at
the level of $400 million in fiscal year 2006. Reaching the authorized
level is critical, as the No Child Left Behind Act requires science
testing to begin in the 2007-2008 school year.
ACS also urges you to reject the Administration's proposal to
earmark its requested $120 million increase in the program for a new
high school mathematics initiative. This proposal strays from the
intent of the No Child Left Behind Act, which seeks to address the
equally critical needs in both math and science. A similar proposal was
made by the Administration in the fiscal year 2005 budget and, in our
view, wisely rejected by your Committee.
The ACS recognizes the value of encouraging chemists retiring early
or those desiring a change from industry work to consider and train for
a second career in high school teaching. To that end, we support the
president's Adjunct Teacher Corps initiative, which brings experienced
professionals with subject-matter knowledge into the classroom to teach
part or full-time in areas of high need, including science and math.
These professionals can offer valuable insights into the content and
practical applications of their subject areas. We recommend that
funding be provided to ensure adequate teacher development and to
ensure effective communication of their expertise to their students.
On another front, the ACS opposes the Administration's proposal to
eliminate the Vocational and Technical Education program. We feel it
would have a very negative impact upon our technological leadership. In
addition to scientists and engineers, the STEM workforce relies on
highly trained technicians, of whom many enter the workforce through
tech-prep programs that are currently supported under the Vocational
and Technical Education program ($110.7 million in fiscal year 2005).
It is unrealistic to expect states to assume the burden of funding
tech-prep programs through the new High School Intervention program,
due to its emphasis on meeting academic state standards.
At the post-secondary level, the Department of Education provides
incentives to students to pursue science and engineering occupations.
The Graduate Assistance in Areas of National Need program (GAANN) is
one such example. GAANN provides graduate and doctoral students with
enhanced fellowship opportunities. We believe this program should
support at least 1,200 fellowships, up from the 850 in fiscal year 2004
and the 721 fellowships that would be supported under the current
budget request. This increased support is vital at a time when our
nation must have the intellectual resources to respond to homeland
security threats and maintain our economic growth.
Furthermore, we strongly support programs such as the Minority
Science and Engineering Improvement program in order to increase the
participation of underrepresented minorities in scientific and
technological careers.
In closing, we appreciate your past support and leadership on
behalf of the Department of Education's programs. We strongly believe
that proactively investing in STEM education today, will pay real
dividends with a more competitive, innovative and successful American
workforce tomorrow.
______
Prepared Statement of the American College of Rheumatology
The American College of Rheumatology (ACR) is pleased to provide
this statement for the record in support of the several important
agencies and programs that address arthritis within the Department of
Health and Human Services.
The ACR is an organization of physicians, health professionals and
scientists that serves its members through programs of education,
research and advocacy that foster excellence in the care of people with
arthritis, rheumatic and musculoskeletal diseases.
Arthritis means swelling, pain and loss of motion in the joints of
the body. There are more than 100 rheumatic diseases that cause this
condition, which can sometimes be fatal, in both children and adults of
all ages. One in three adults, or 70 million people in the United
States, are affected by arthritis and other rheumatic conditions
according to the Centers for Disease Control and Prevention (CDC).
Arthritis and other chronic joint problems are the leading cause of
disability among adults in the United States, costing more than $86
billion a year in medical costs and lost productivity. These numbers
and related costs are expected to increase as the U.S. population ages.
This burden will surely increase, possibly uncontrollably, as the
baby boomer group continues to age. Although some forms of arthritis
are predominant in older individuals, arthritis also affects children
and adults of all ages. The number of individuals affected, as well as
associated costs, will increase as the size of our elderly population
continues its upswing.
Current research is providing breakthrough advances that have the
potential to revolutionize our understanding of arthritis and rheumatic
diseases, leading to more effective treatments, decreased costs and
increased quality of life for patients suffering from these conditions.
The federal government is doing critical medical research into the
causes, treatment and prevention of arthritis and rheumatic diseases.
The ACR urges the subcommittee to increase its investment in research
and arthritis programs to further progress made in preventing,
diagnosing and treating these prevalent diseases.
THE NATIONAL INSTITUTES OF HEALTH
The ACR supports a 2006 appropriation of $30 billion for the
National Institutes of Health (NIH) in order for it to carry out its
goal to acquire new knowledge to help prevent, detect, diagnose, and
treat disease and disability. The NIH disperses funding to the
different institutes within it, including the National Institute of
Arthritis and Musculoskeletal and Skin Diseases (NIAMS) and the
National Institute of Allergy and Infectious Diseases (NIAID).
Therefore, overall funding for NIH is extremely important to the
federal medical research effort in arthritis and rheumatic diseases.
THE NATIONAL INSTITUTE OF ARTHRITIS AND MUSCULOSKELETAL AND SKIN
DISEASES
The ACR strongly supports a 2006 appropriation of $541.6 million
for the National Institute of Arthritis and Musculoskeletal and Skin
Diseases (NIAMS), which leads the federal medical research effort in
arthritis and rheumatic diseases. The NIAMS conducts research related
to the causes, treatments and prevention of diseases of the bone,
joints, muscle, skin and other connective tissues. The NIAMS sponsors
research and research training at universities and medical centers
throughout the United States. Research sponsored by the NIAMS leads to
the development of more effective treatments, which leads to decreased
costs and improved quality of life for patients suffering from
rheumatic diseases.
THE NATIONAL INSTITUTE OF ALLERGY AND INFECTIOUS DISEASES
The ACR recommends a 2006 appropriation of $4.667 billion for the
National Institute of Allergy and Infectious Diseases (NIAID), which
conducts research that strives to understand, treat, and ultimately
prevent the myriad of infectious, immunologic, and allergic diseases.
The NIAID's research focuses on the basic biology of the immune system
and mechanisms of immunologic diseases including autoimmune disorders.
To accomplish its goals, the NIAID carries out a wide range of basic,
applied, and clinical investigations within its own laboratories, and
provides research grant, contract, and cooperative agreement support to
scientists at universities and other research institutions throughout
the country and the world.
THE AGENCY FOR HEALTHCARE RESEARCH AND QUALITY
The ACR supports a 2006 appropriation of $440 million for the
Agency for Healthcare Research and Quality (AHRQ) to carry out its
mission to improve the quality, safety, efficiency, and effectiveness
of health care for all Americans. AHRQ's health services research
complements the biomedical research of the NIH by helping physicians,
hospitals, purchasers and other stakeholders in health care delivery
make informed decisions about what treatments work best, for whom,
when, and at what costs.
THE NATIONAL ARTHRITIS ACTION PLAN
The ACR recommends a 2005 appropriation of $15 million for the
National Arthritis Action Plan (NAAP). The NAAP, housed within the CDC
National Center for Chronic Disease Prevention and Health Promotion,
helps deliver the advances made in the biomedical research system to
millions of Americans who have arthritis. The NAAP is designed to
increase recognition among the general public, people with arthritis
and their families, medical care providers, and policy makers, of the
impact of arthritis, what can be done to prevent or delay its onset,
and what effective interventions and are available to reduce disability
and improve the quality of life. The NAAP has made a tremendous impact
in how state public health departments address this national health
problem, and with increased funding, programs could be established in
more states and existing programs could be expanded.
IMPACT OF CONTINUING RESOLUTIONS ON MEDICAL RESEARCH
The ACR urges Congress to recognize the difficulties imposed on
researchers by interruptions in the medical research funding cycle
caused by delays in the federal appropriations process. Use of the
continuing resolution mechanism to fund government operations in the
absence of the normal appropriations process often causes federally
funded researchers to halt their research until the appropriations
process is resolved. These disruptions have the potential to not only
significantly compromise the validity of the basic medical research
being conducted, but can result in the unnecessary expenditure of
federal funds to reactivate specific research studies. In order to
preserve the integrity of federally supported medical research, the ACR
urges Congress to minimize the use of continuing resolutions.
SUMMARY
The ACR appreciates the subcommittee's support for these important
programs in recent years. As physicians involved in both research and
specialized patient care, ACR members are acutely aware of the
magnitude of the challenges that disease and disability place on the
health care delivery system. The ACR encourages the subcommittee to
provide a strong investment in the programs listed above for 2006 so
that necessary research and programs to combat arthritis and related
diseases can continue. These programs are critical to the development
of more effective treatments, decreasing costs and improving the
quality of life for patients suffering from rheumatic diseases.
______
Prepared Statement of the American Dental Education Association
The American Dental Education Association (ADEA) is grateful for
the opportunity to provide testimony with regard to fiscal year 2006
appropriations for Federal programs that help to educate the future
dental workforce, encourage the prevention of dental disease and
provide access to oral health care for underserved populations. These
programs are critical to academic dental institutions in fulfilling
their primary mission to educate, conduct research and provide patient
care. ADEA strongly urges Congress to enhance funding for the programs
and preserve their fundamental structure.
ADEA is the premier national organization that speaks for dental
education. It is dedicated to serving the needs of all 56 U.S. dental
schools, nearly 730 dental residency programs and 550 allied dental
programs, as well as the tens of thousands of faculty, dental residents
and students engaged in training. It is at dental education
institutions that future practitioners and researchers gain their
knowledge; the majority of dental research is conducted; and
significant dental care is provided to underserved low-income
populations, including individuals covered by Medicaid and the State
Children's Health Insurance Program (SCHIP).
Academic dentistry endeavors to address the oral health needs of
the nation's uninsured, underinsured and publicly insured citizens.
Profound disparities in the oral health of the nation's population have
resulted in what the Surgeon General \1\ called a ``silent epidemic''
of dental and oral diseases affecting the most vulnerable among us.
These disparities, combined with the current shortage of dental school
faculty, the scarcity of underrepresented minority dentists, and the
need for targeted incentives to draw dentists to practice in rural and
underserved communities, make our funding recommendations critically
important.
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\1\ Oral Health in America: A Report of the Surgeon General, 2000.
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The Administration's fiscal year 2006 budget proposal reduces by
approximately 96 percent funding for Title VII Health Professions
Programs and eliminates 100 percent of the funding for pediatric,
general and public health dental residency programs. Title VII programs
embody the federal government's commitment to educating the nation's
future health care providers. Such programs focus on wide-ranging and
important matters including interdisciplinary training, geriatric and
rural health care, allied health education, advanced training for
dental, allopathic and osteopathic residents. Eliminating funding for
the programs will gravely weaken the health infrastructure of the
nation.
Zeroing out funding for the dental residency training programs
means that essential advanced education for dental residents and the
oral health services they provide to underserved communities will be
eliminated. Abandoning these programs will intensify and contribute to
the growing crisis in accessing oral health services as more states
reduce Medicaid dental benefits for adults, the frail elderly and
compromised patients. Furthermore, restrictions in Medicaid and SCHIP
enrollment and eligibility have reduced access to oral health care for
children.
As Congress wrestles with the fiscal year 2006 appropriations for
federal agencies and programs of importance to dental education and
research, ADEA respectfully urges that the following programs' funding
be restored and enhanced at the levels recommended:
$15 MILLION FOR TITLE VII GENERAL DENTISTRY AND PEDIATRIC DENTISTRY
RESIDENCY TRAINING PROGRAMS
ADEA recommends that Congress restore and enhance funding for
dental residency training programs. These programs are instrumental in
educating dentists who work in underserved communities and treat
Medicaid, SCHIP or other underserved populations, particularly those
with special needs. Furthermore, dentists training in Title VII funded
programs staff clinics that provide treatment at low or no cost.
$19 million for the ryan white hiv/aids dental reimbursement program of
THE RYAN WHITE CARE ACT (PART F)
The Dental Reimbursement and the Community-based Dental
Partnerships programs, the smallest component of the CARE Act, are
successful in increasing access and educating and training dental
students, dental residents and allied dental students in the provision
of care for patients afflicted with the disease. The Dental
Reimbursement Program (DRP) accomplishes significant benefits for both
patient care and education of future oral health practitioners.
Academic dental institutions (ADI) are safety net providers of oral
and dental care for low-income, uninsured or underinsured
immunocompromised patients who are prone to oral infections. A recent
study \2\ found that providing HIV/AIDS patients with regular
diagnostic and preventive care reduced the need for more complex and
costly services. Thus, two federal objectives--service to patients of
limited means and education of future providers--are accomplished with
this modest but important program.
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\2\ Journal of the American Dental Association (133 JADA 1343).
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$420 MILLION FOR THE NATIONAL INSTITUTE FOR DENTAL AND CRANIOFACIAL
RESEARCH (NIDCR)
NIDCR is the only Institute within the National Institutes of
Health (NIH) whose mission is to improve oral, dental and craniofacial
health through research, research training, and the dissemination of
health information. Oral disease affects nearly every American. It is
essential that Congress increase support for NIDCR's diverse and
critical research initiatives. Of paramount importance is funding for
clinical research and dental school research infrastructure. Among the
ongoing research projects being conducted by dental researchers is work
on saliva as a reliable diagnostic fluid to detect systemic diseases in
a non-invasive way, including the detection of cancer-associated
molecules associated with oral squamous cell carcinoma as well as
research on how to engineer teeth in the laboratory and transplant them
into the mouth to replace a missing or damaged tooth. In any future NIH
reorganization NIDCR should remain independent.
THE CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC)
$18 million for the CDC Oral Health Program
The CDC Oral Health Program supports state and community-based
programs that work to prevent oral disease and reduce disparities in
oral health. The program works with states to establish surveillance
systems that provide valuable health information to assess the
effectiveness of programs and target them to populations at greatest
risk. Grants have been used to support basic state oral health
services, including support for program leadership, monitoring oral
health risk factors, and developing and evaluating prevention programs
such as community fluoridation and school-based sealant programs.
Federal funding is essential to maintain these programs.
$130 million for the CDC Prevention Block Grant
$3.5 million of this amount is for oral health projects. The
President's budget eliminates the program completely. The funding is 50
percent of the CDC money that flows back to states for oral health
programs. It is used by states to purchase and replace fluoridation
equipment and to maintain a state dental presence.
$10 MILLION FOR THE DENTAL HEALTH IMPROVEMENT ACT ENACTED AS PART OF
THE HEALTH CARE SAFETY NET AMENDMENTS OF 2002 (PUBLIC LAW 107-251)
The Dental Health Improvement Act will help, when funded, to
eliminate the disparities in oral health status and assure access to
oral health services for low-income children. The law authorized $50
million over 5 years for innovative state oral health care grants.
Congress has not yet provided funding for this important federal-state
partnership. The American Dental Association (ADA) and the American
Academy of Pediatric Dentists (AAPD) join ADEA in requesting $10
million for this program in fiscal year 2006.
Grants can be used for a variety of state initiatives including
loan forgiveness programs for dentists serving in dental health
professions shortage areas (HPSAs); grants or low-interest loans for
dentists participating in Medicaid; dental faculty recruitment
programs; and establishment or augmentation of a state dental officer
position to coordinate oral health and access issues in the state. The
program, when funded, will be a shining example of a true federal-state
partnership, as states must agree to match at least 40 percent of any
federal contributions under this grant.
$135 million for the minority and disadvantaged assistance programs in
THE HEALTH PROFESSIONS EDUCATION AND TRAINING PROGRAMS
The infrastructure that has been established by previous federal
investment requires sustained and increased support to meet the
challenges of diversifying the health care workforce, addressing
student indebtedness, eliminating faculty shortages, and eradicating
oral health care disparities in underserved communities.
The President's fiscal year 2006 budget eliminates funding for the
Centers of Excellence (COE) program, the Health Careers Opportunity
Program (HCOP), and the Faculty Loan Repayment Program (FLRP) and
reduces by nearly 80 percent the funding for Scholarships for
Disadvantaged Students (SDS). These programs are crucial if we are to
address concerns with health disparities. The COE, HCOP and SDS
programs are essential in assisting economically disadvantaged students
enter and graduate from health professions schools. Underrepresented
minority recruitment and retention in the health professions is a
serious problem. In 2004, the first-year enrollment of underrepresented
minority students in dental school was just 11.3 percent of the total
first year dental student enrollment. In 1990, the percentage of
underrepresented minority students in the first year class was 13.8
percent of the total first year enrollment. While the FLRP assists in
recruiting and retaining faculty, it is of particular importance to
academic dentistry as there is currently a faculty shortage. ADEA
strongly urges Congress to continue investing in HCOP, COE, SDS, and
FLRP so that the health professions can make strides in diversifying
the future health care workforce.
$213 MILLION FOR THE NATIONAL HEALTH SERVICE CORPS (NHSC)
The National Health Service Corps Scholarship and Loan Repayment
Programs assist students with financing their health professions
education while promoting primary care access to underserved areas. It
is critical that the NHSC receive increased funding to meet the growing
health care needs in the nation's rural and underserved communities.
The President's budget proposal cuts $5 million from the NHSC budget at
a time when it is crucial to maintain a pipeline of health providers in
health professions shortage areas.
$108 MILLION FOR THE INDIAN HEALTH SERVICE (IHS) DENTAL PROGRAMS
Maintaining the health care infrastructure and supporting the
health care workforce that provides care to the Alaska Native/American
Indian (AN/AI) population is essential in meeting the needs of Indian
people. The IHS Loan Repayment Program makes payments on health care
worker's student loans while they provide care at one of 280 hospital
sites located around the country. The IHS Scholarship program provides
both hope and financial support to AN/AI students pursuing careers in
the health professions. Without these programs access to care as well
education for the AN/AI population will surely worsen.
$1 MILLION FOR A MEDICAID COMMISSION TO STUDY AND RECOMMEND CHANGES TO
MEDICAID
ADEA supports the amendment in the Senate's fiscal year 2006 Budget
Resolution that halts further cuts to Medicaid and instead establishes
a reserve fund of $1 million to establish a Medicaid Commission to
study and recommend changes needed in Medicaid. While expenditures on
dental care account for less than 1 percent of all Medicaid
expenditures, 25 million children enrolled in Medicaid are eligible for
needed dental care under the program. Medicaid accounts for almost a
quarter of all dental expenditures for children under age 6 and
provides the only guarantee of relief from dental pain and infections,
restoration of teeth and dental health for millions of children on
Medicaid. The Medicaid program is the only access that many of the
poorest and sickest adults have to critical emergency oral health care.
In conclusion, the American Dental Education Association
appreciates consideration of our fiscal year 2006 budget
recommendations for dental education and research. A sustained federal
commitment is needed to help meet the challenges oral disease poses
among the nation's most vulnerable citizens including children. So too
is the development of a partnership between the federal government and
dental education programs to implement a national oral health plan that
guarantees access to dental care for everyone, ensures continued dental
health research, eliminates disparities, and eliminates workforce
shortages.
______
Prepared Statement of the American Geological Institute
To the Chairman and Members of the Subcommittee: Thank you for this
opportunity to provide the American Geological Institute's perspective
on fiscal year 2006 appropriations for the Department of Education's
Mathematics and Science Partnership program.
In 1999, the Third International Math and Science Study found that
the longer U.S. students are in school, the farther they fall behind in
math and science proficiency in international comparisons. That
prompted President Bush to propose the National Math and Science
Partnership (MSP) program as part of No Child Left Behind. The goal of
the partnership program is to strengthen K-12 science and math
education by promoting a vision of education as a continuum that begins
with the youngest learners and progresses through adulthood with
teacher training. Among its activities, the program supports
partnerships that unite K-12 schools, institutions of higher education
and private industry.
Congress took the president's suggestion and authorized an MSP
program at the National Science Foundation (NSF) and another
partnership program at the Department of Education in 2002. These two
acts of Congress were meant to fund two different types of partnerships
to achieve the overall goal of highly qualified math and science
teachers ensuring that all students have the basic knowledge to compete
in the ever changing and competitive job market. The funds allocated
for the NSF's MSPs go to the highest quality proposals chosen through a
competitive peer-reviewed grant program. The program focuses on
modeling, testing and identification of effective math-science
activities. The funds allocated for the Department of Education MSPs go
directly to the states as formula grants, providing funds to all states
to replicate and then implement the best of the NSF partnerships
throughout the country. Once states receive the money, they make
competitive grants to local partnerships.
At a hearing in October 2003, the House Science Committee found
that these new partnership programs are ``on the right track toward
improving math and science education.'' Testifying before the
committee, M. Susana Navarro, executive director of the El Paso
Collaborative for Academic Excellence MSP, said: ``What the MSP now
provides is an opportunity to bring together partners across the
community, K-16, toward the shared development and implementation of
high quality math and science content and instructional practices aimed
at improving student achievement among all students.''
Just 3 months after that hearing, President Bush released his
budget proposal for fiscal year 2005, which phased out the NSF
partnership programs and shifted the funding to the MSP companion
program at the Department of Education. However, the $120 million
increase requested for 2005 was not slated to fund additional MSPs on
the local level; instead it would have financed a new program focused
on accelerating the math education of secondary-school students,
especially those who are at risk of dropping out of school because they
lack basic skills in math.
The Senate Labor, Health and Human Services and Education did not
go along entirely with the President's plan last year. The MSPs would
have received $200 million, 4.5 percent less than the President
requested but $51 million or 34 percent more than fiscal year 2004
funding in the Senate version of the bill. The report stated, ``These
funds will be used to improve the performance of students in the areas
of math and science by bringing math and science teachers in elementary
and secondary schools together with scientists, mathematicians, and
engineers to increase the teachers' subject-matter knowledge and
improve their teaching skills.''
We applauded the Subcommittee because it did not choose to fund
math over science and, ultimately, Congress did not chose to fund math
over science. In last year's omnibus bill, the Math and Science
Partnership budget increased 16 percent over fiscal year 2004 levels to
$179 million and none of those funds were set-aside for one subject.
This year, the President has proposed something similar. The fiscal
year 2006 budget proposal increases the MSPs to $269 million, an
increase of $90.4 million, or 51 percent, over the fiscal year 2005
level. Although a large increase has been proposed, the President's
plan restricts $120 million for the Secondary Education Mathematics
Initiative, a competitive grant program to be administered by the
Department of Education. This creates a net decrease in funding
available to the states in fiscal year 2006 compared to the fiscal year
2005 allocations.
The $120 million in funds for Secondary Education Mathematics
Initiative is part of the overall High School Initiative, which will
expand the application of No Child Left Behind principles to improve
high school education and raise achievement, particularly the
achievement of students most at risk of failure. This new initiative
combines a number of categorical programs in order to give states and
districts more flexibility and contains stronger accountability
mechanisms.
AGI believes the two MSPs are the most effective approach to
rapidly improving the abilities of all students to enhance their future
prospects regardless of their ultimate career goals. The two programs,
designed and authorized by Congress, are complementary. AGI supports
funding at NSF for competitive grants for teaching tools and teacher
training and funding at the Department of Education for formula grants
for implementation of these tools in K-12 education. The peer-review
process in the NSF program should be safeguarded as should the formula
grants for all states as administered by the Department of Education.
Moreover, the program within the Department of Education should not
suffer a net reduction in funding in order to support a new initiative
for mathematics. These funds should serve the Math and Science
Partnership with no earmarks or set-asides.
Thank you for the opportunity to present this testimony to the
Subcommittee. If you would like any additional information, please
contact me at 703-379-2480, ext. 228 voice, 703-379-7563 fax,
[email protected], or 4220 King Street, Alexandria VA 22302-1502.
______
Prepared Statement of the American Indian Higher Education Consortium
Mr. Chairman and Members of the Subcommittee, on behalf of this
Nation's 34 Tribal Colleges and Universities (TCUs), which compose the
American Indian Higher Education Consortium (AIHEC), thank you for the
opportunity to share our fiscal year 2006 funding requests for programs
within the U.S. Department of Education, and the U.S. Department of
Health and Human Services--Head Start program.
This statement will cover two areas: (a) background on the tribal
colleges, and (b) justifications for our funding recommendations.
I. BACKGROUND ON TRIBAL COLLEGES
The Tribal College Movement began in 1968 with the establishment of
Navajo Community College, now Dine College, in Tsaile, Arizona. Rapid
growth of tribal colleges soon followed, primarily in the Northern
Plains region. In 1972, the first six tribally controlled colleges
established AIHEC to provide a support network for member institutions.
Today, AIHEC represents 34 Tribal Colleges and Universities located in
12 states, which were begun specifically to serve the higher education
needs of American Indians. Annually, these institutions serve upwards
of 30,000 full-and part-time students from over 250 Federally-
recognized tribes.
Currently, all but one of our colleges is accredited by
independent, regional accreditation agencies and like all institutions
of higher education, must undergo stringent performance reviews on a
periodic basis to retain their accreditation status. In addition to
college level programming, TCUs provide much needed high school
completion (GED), basic remediation, job training, college preparatory
courses, and adult education. Tribal colleges fulfill additional roles
within their respective reservation communities functioning as
community centers, libraries, tribal archives, career and business
centers, economic development centers, public-meeting places, and child
care centers. Each TCU is committed to improving the lives of its
students through higher education and to moving American Indians toward
self-sufficiency.
Tribal colleges provide access to higher education for American
Indians and others living in some of this Nation's most rural and
economically depressed areas. These institutions, chartered by their
respective tribal governments, were established in response to the
recognition by tribal leaders that local, culturally based institutions
are best suited to help American Indians succeed in higher education.
TCUs combine traditional teachings with conventional postsecondary
courses and curricula. They have developed innovative means to address
the needs of tribal populations and are successful in overcoming long-
standing barriers to higher education for American Indians. Since the
first tribal college was established on the Navajo reservation, these
vital institutions have come to represent the most significant
development in the history of American Indian higher education,
providing access to and promoting achievement among students who may
otherwise never have known postsecondary education success.
Despite their remarkable accomplishments, tribal colleges remain
the most poorly funded institutions of higher education in the country.
Persistently inadequate funding remains the most significant barrier to
their success. Funding for basic institutional operations of 26
reservation based colleges is provided through Title I of the Tribally
Controlled College or University Assistance Act (Public Law 95-471).
Funding under the Act was first appropriated in 1981. Almost 25 years
later, the funding level is at just 75 percent of the authorized level
of $6,000 per Indian student, which is defined as an enrolled member of
a Federally recognized tribe. In fiscal year 2005, these colleges are
receiving $4,447 per full-time equivalent Indian student toward their
institutions operating budgets. While mainstream institutions have had
a foundation of stable state tax-based support, TCUs must rely on year-
to-year Federal appropriations for their basic institutional operating
funds. Because TCUs are located on Federal trust territories, states
have no obligation to fund them even for the non-Indian state-resident
students who account for approximately 20 percent of TCU enrollments.
Yet, if these same students attended any other public institution in
the state, the state would provide basic operating funds to the
institution.
Inadequate funding has left many of our colleges with no choice but
to continue to operate under severely distressed conditions. Although
facilities initiatives of the last few years have resulted in
widespread renovation and construction at TCUs, many colleges began in
surplus trailers; cast-off buildings; and facilities with crumbling
foundations, faulty wiring, and leaking roofs, and therefore have a
long way to go. Sustaining quality academic programs is a challenge
without a reliable source of facilities maintenance and construction
funding.
As a result of more than 200 years of Federal Indian policy--
including policies of termination, assimilation and relocation--many
reservation residents live in abject poverty comparable to that found
in Third World nations. Through the efforts of tribal colleges,
American Indian communities receive services they need to reestablish
themselves as responsible, productive, and self reliant.
II. JUSTIFICATIONS
A. Higher Education Act
The Higher Education Act Amendments of 1998 created a separate
section within Title III, Part A, specifically for the Nation's Tribal
Colleges and Universities (Section 316). Titles III and V programs
support institutions that enroll large proportions of financially
disadvantaged students and have low per-student expenditures. TCUs
clearly fit this definition as they are among the most poorly funded
institutions in America, yet they serve some of the most impoverished
areas of the country. TCUs are victims of their own success. This year
two new tribal colleges are eligible to compete for funding under Title
III. Despite the increase in the size of the pool of eligible
institutions, the President's fiscal year 2006 Budget recommends level
funding for this vital program. We urge the Subcommittee to fund
section 316 at $32 million, an increase of $8.2 million over fiscal
year 2005 and the President's request, and we ask that report language
included in since fiscal year 2003 be restated clarifying that funds
not needed to support continuation grants or new planning or
implementation grants be available for facilities renovation and
construction grants.
The importance of Pell grants to our students cannot be overstated.
Department of Education figures show that at the majority of all tribal
college students receive Pell grants, primarily because student income
levels are so low and our students have far less access to other
sources of aid than students at mainstream institutions. Within the
Tribal College system, Pell grants are doing exactly what they were
intended to do--they are serving the needs of the lowest income
students by helping people gain access to higher education and become
active, productive members of the workforce. We urge Congress to fund
this critical program at the highest possible level.
B. Carl D. Perkins Vocational & Applied Technology Education Act
Tribally-Controlled Postsecondary Vocational Institutions.--Section
117 of the Perkins Act provides basic operating funds for two of our
member institutions: United Tribes Technical College in Bismarck, North
Dakota, and Crownpoint Institute of Technology in Crownpoint, New
Mexico. We urge that Congress fund this program at $8.5 million.
Included in both the House and Senate reauthorization bills, which are
being considered in the 109th Congress is language waiving section 117
grantees from having to utilize a restricted indirect cost rate, since
the timeline for enactment of the reauthorizing legislation is
uncertain, we ask that you reiterate the language that has been
included in this appropriations measure since fiscal year 2002 stating
that Section 117 Perkins grantees need not utilize restricted indirect
cost rate.
The President's fiscal year 2006 budget once again proposes the
elimination of the Native American Program Section 116, which reserves
1.25 percent of appropriated funding to support Indian vocational
programs. We strongly urge Congress to continue this program, which is
vital to the survival of vocational education programs being offered at
TCUs.
C. Greater Support of Indian Education Programs
American Indian Adult and Basic Education.--This section supports
adult education programs for American Indians offered by TCUs, state
and local education agencies, Indian tribes, institutions, and
agencies. Despite a lack of funding, TCUs must find a way to continue
to provide basic adult education classes for those 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, learn to read.
According to a 1995 survey conducted by the Carnegie Foundation for the
Advancement of Teaching, 20 percent of the participating students had
completed a tribal college GED program before beginning higher
education classes at the tribal college. At some schools, the
percentage is even higher. Clearly, there is a tremendous need for
basic educational programs, and TCUs need funding to support these
crucial activities. Tribal colleges respectfully request that Congress
appropriate $5 million to meet the ever increasing demand for basic
adult education and remediation program services.
American Indian Teacher Corps.--American Indians are severely
under-represented in the teaching and school administrator ranks
nationally. These competitive programs, aimed at producing new American
Indian teachers and school administrators for schools serving American
Indian students, support the recruitment, training, and in-service
professional development programs for Indians to become effective
teachers and school administrators, and in doing so excellent role
models for Indian children. We believe that the TCUs are the ideal
catalysts for these initiatives because of our current work in this
area and the existing articulation agreements TCUs hold with 4-year
degree awarding institutions. We request that Congress support these
programs at $10 million and $5 million, respectively, to increase the
number of qualified American Indian teachers and school administrators
in Indian Country.
D. Department of Health and Human Services/Administration for Children
& Families/Head Start
Tribal Colleges and Universities (TCU) Head Start Partnership
Program.--The TCU/Head Start partnership has made a lasting investment
in our Indian communities by creating and enhancing associate degree
programs in Early Childhood Development and related fields. New
graduates of these programs can help meet the mandate that 50 percent
of all program teachers earn an associate degree in Early Childhood
Development or a related discipline. More importantly, this program has
afforded American Indian children Head Start programs of the highest
quality. A clear impediment to the ongoing success of this partnership
program is the erratic availability of discretionary funding made
available for the TCU/Head Start partnership. Since fiscal year 1999,
the first year of the program, a total of just 15 tribal colleges have
been able to participate in this valuable program. Some colleges were
awarded 3-year grants, others 5-year grants, and in fiscal year 2002
there were no new grants funded at all. In fiscal year 2003, funding
for eight new grants was made available, but in fiscal year 2004, only
two new awards could be made because of the lack of adequate funds. The
President's fiscal year 2006 budget includes a total request of $6.9
billion for Head Start Programs. We request Congress direct the Head
Start Bureau to designate a minimum of $5 million for the TCU/Head
Start Partnership program, to ensure that this critical program can be
continued and be expanded so that all TCUs might participate in the
TCU- Head Start partnership program.
III. CONCLUSION
Tribal colleges and universities are bringing education to
thousands of American Indians. The modest Federal investment in the
TCUs has paid great dividends in terms of employment, education, and
economic development, and continuation of this investment makes sound
moral and fiscal sense. Tribal colleges need your help if they are to
sustain and grow their programs and achieve their missions.
Thank you again for this opportunity to present our funding
recommendations. We respectfully ask the Members of this Subcommittee
for their continued support of the Nation's tribal colleges and
universities and full consideration of their fiscal year 2006
appropriations needs and recommendations.
______
Prepared Statement of the Association of Minority Health Professions
Schools
Mr. Chairman, thank you very much for the opportunity to present
the views of the Association of Minority Health Professions Schools
(AMHPS). I am Dr. John E. Maupin, President of Meharry Medical College
in Nashville, Tennessee and President of AMHPS.
AMHPS is comprised of the nation's 12 historically black medical,
dental, pharmacy, and veterinary. Combined, our institutions have
graduated 50 percent of African-American physicians and dentists, 60
percent of all the nation's African-American pharmacists, and 75
percent of the African-American veterinarians.
Mr. Chairman, historically black health professions institutions
are addressing a pressing national need in carrying out their mission
of training minorities in the health professions. While African-
Americans represent approximately 15 percent of the U.S. population,
only 2-3 percent of the nation's health professions workforce is
African-American. Studies have demonstrated that when African Americans
and other minorities are trained in minority institutions, they are
much more likely to: (1) serve in medically underserved areas, (2) care
for minorities, and (3) accept patients who are Medicaid dependent or
otherwise poor.
This is important Mr. Chairman because the gap in health status
between our nation's minority and majority populations continues to
widen due in part to the lack of access to quality health care services
in minority communities. As a result, we believe it is imperative that
the federal commitment to training African Americans and other
minorities in the health professions remains strong.
In spite of our proven success in training health professionals,
and the important contribution these professionals make, our
institutions continue to face a financial struggle inherent to our
mission. The financial challenges facing the majority of our students
affect our institutions in numerous ways. For example, we are unable to
depend on tuition as a means by which to respond to any discontinuation
of federal support. Moreover, the patient populations served by the
AMHPS institutions are overwhelmingly poor. As a result, our
institutions cannot rely on patient care income at a time when the
average medical school gets 40-60 percent of its operating revenue from
health care services.
Mr. Chairman, before I present AMHPS's appropriations
recommendations for fiscal year 2006, I would like to express my
sincere appreciation for your leadership in restoring funding for the
Health Resources and Services Administration's health professions
training programs in fiscal year 2005. For many of our schools, support
from these programs represent the difference between our doors being
open or closed. We cannot overstate our gratitude for your leadership
in this area.
FISCAL YEAR 2006 RECOMMENDATIONS FOR FEDERAL PROGRAMS OF INTEREST TO
AMHPS
Health Resources and Services Administration
Health Professions Training
The health professions training programs administered by the Health
Resources and Services Administration are the only federal initiatives
designed to address the longstanding under-representation of minority
individuals in health careers. HRSA's Minority Centers of Excellence,
Health Careers Opportunity Program, and Scholarships for Disadvantaged
Students, support health professions institutions with a historic
mission and commitment to increasing the number of minorities in the
health professions.
Mr. Chairman, our schools and students greatly appreciate the
subcommittee's consistent support of these important programs. However,
we are very disappointed that the administration's budget all but
eliminates funding again this year for health professions programs
focused on diversity in the workforce. For fiscal year 2006, AMHPS
joins with the Health Professions Nursing and Education Coalition in
recommending a funding level of at least $300 million for Title VII
health professions training programs.
For the health professions programs specifically focused on
enhancing minority representation in the health care workforce AMHPS
recommendations are as follows:
Minority Centers of Excellence
The purpose of the Minority Centers of Excellence program (COE) is
to assist schools that train minority health professionals by
supporting programs of excellence in health professions education at
those institutions. The COE program focuses on improving student
recruitment and performance; improving curricula and cultural
competence of graduates; facilitating faculty/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 2006, AMHPS recommends a funding level of $40
million for Minority Centers of Excellence (an increase of $6.1 million
over fiscal year 2005).
Health Careers Opportunity Program
Grants made to health professions schools and educational entities
under the Health Careers Opportunity Program (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 the health professions school
For fiscal year 2006, AMHPS recommends a funding level of $40
million for the Health Careers and Opportunities Program (an increase
of $4.1 million over fiscal year 2005).
Scholarships for Disadvantaged Students
The Scholarships for Disadvantaged Students program was established
to make scholarship funds available to eligible students from
disadvantaged backgrounds who are enrolled (or accepted for enrollment)
as full-time students. To be eligible for funding, a school must have
in place a program to recruit and retain students from disadvantaged
backgrounds (including racial and ethnic minorities) and demonstrate
that the program has achieved success based on the number or percentage
of disadvantaged students who graduate from the school.
For fiscal year 2006, AMHPS recommends a funding level of $55
million for the Scholarships for Disadvantaged Students program (an
increase of $7.5 million over fiscal year 2005).
HEALTHY COMMUNITIES ACCESS PROGRAM
Mr. Chairman, as you know, Congress passed legislation last year in
2003 to reauthorize the Community Health Centers program. Included in
this important measure was a provision which established a
demonstration authority within the Healthy Community Access Program to
foster greater collaboration between historically black health
professions and federally qualified CHC's. Specifically, this
provision:
(1) Establishes a demonstration program for the development of
research infrastructure at historically black health professions
schools affiliated with federally qualified Community Health Centers.
(2) Establishes joint and collaborative programs of medical
research and data collection between historically black health
professions schools and federally qualified Community Health Centers
with the goal of improving the health status of medically underserved
populations.
(3) Supports the cost of patient care, data collection, and
academic training resulting from these partnerships.
Mr. Chairman, Meharry Medical College and other members of our
Association successfully applied for funding under this new
demonstration authority in fiscal year 2005. These funds are making an
important contribution at all of our institutions. For fiscal year
2006, we encourage the subcommittee to restore funding for the Health
Communities Access Program to $83 million.
NATIONAL INSTITUTES OF HEALTH
The National Center on Minority Health and Health Disparities
Established in 2000 by the Minority Health and Health Disparities
Research and Education Act (Public Law 106-525), the National Center on
Minority Health and Health Disparities at NIH is charged with
addressing the longstanding health status gap between minority and
majority populations. The National Center has the authority to:
--Directly support biomedical research, training, and information
dissemination focused on eliminating health status disparities.
--Serve in a leadership capacity in developing a comprehensive plan
for minority health research at NIH.
--Participate as an equal when NIH institute and center directors
meet to determine research policy.
--Support the enhancement of biomedical research capacity at minority
health professions institutions through a ``Research
Endowment'' program.
--Support the development of health professions institutions with a
history and mission of serving minority and medically
underserved communities through a ``Centers of Excellence''
program.
For fiscal year 2006, AMHPS recommends a funding level of $250
million for the National Center. This is an increase of $53 million.
This new funding will enable the Center to support all of its new
programs and begin to meet the challenge of eliminating health status
disparities within minority and medically underserved communities.
Extramural Facilities Construction
Mr. Chairman, if we are to take full advantage of the historic
increases in biomedical research funding that Congress has provided to
NIH, it is critical that our nation's research infrastructure remain
strong.
Under legislation passed in 2001, the authorization level for the
Extramural Facility Construction program at the National Center for
Research Resources was increased from $150 million to $250 million. In
addition, the law maintains the 25 percent set-aside for Institutions
of Emerging Excellence (many of which are minority institutions) for
funding up to $50 million and allows the NCRR director to waive the
matching requirement for participation in the program.
Unfortunately, funding for the Extramural Facility Construction
program was cut from $119 million in fiscal year 2004 to $30 million in
fiscal year 2005. AMHPS encourages the subcommittee to prioritize
support for this important program in fiscal year 2006 by restoring
funding to the fiscal year 2004 level.
Research Centers at Minority Institutions
The Research Centers at Minority Institutions program (RCMI) at the
National Center for Research Resources 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, AMHPS recommends that funding for this important program
grow at the same rate as NIH overall in fiscal year 2005.
STRENGTHENING HISTORICALLY BLACK GRADUATE INSTITUTIONS--DEPARTMENT OF
EDUCATION
The Department of Education's Strengthening Historically Black
Graduate Institutions program (Title III, Part B, Section 326) is
extremely important to AMHPS 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.
For fiscal year 2006, AMHPS recommends an appropriation of $65
million (an increase of $6.5 million over fiscal year 2005) to continue
the vital support that this program provides to historically black
graduate institutions.
HHS OFFICE OF MINORITY HEALTH
The HHS Office of Minority Health (OMH) has the potential to play a
critical role in addressing health status disparities throughout the
country. Unfortunately, the office does not currently have the
authority or resources necessary to support activities that will truly
make a difference in closing the health gap between minority and
majority populations. For fiscal year 2006, AMHPS recommends a funding
level of $65 million for the Office, with $10 million designated for
the following programs focused on medically underserved communities and
capacity building for the training of minorities in health professions:
(1) OMH sponsored programs to assist medically underserved
communities with the greatest need in solving health disparities and
attracting and retaining health professionals;
(2) Assistance to minority institutions in acquiring real property
to expand their campuses to increase the capacity to train minorities
for medical careers;
(3) Support of conferences for high school and undergraduate
students to pursue health professions careers; and
(4) Support for cooperative agreements with minority institutions
for the purpose of strengthening their capacity to train more
minorities in the health professions.
Once again, thank you for the opportunity to present the views of
the Association of Minority Health Professions Schools. We look forward
to working with you in support of these important programs.
______
Prepared Statement of the Association of University Centers on
Disabilities
Mr. Chairman, on behalf of the Association of University Centers on
Disabilities, I am pleased to submit this written testimony for the
record both as a means to thank you for the Committee's support of our
Centers in fiscal year 2005, and as a way of alerting you to the
exciting developments happening now across the national network of
University Centers for Excellence in Developmental Disabilities,
Education, Research and Service (UCEDDs). The network of UCEDDs is a
showcase for unique and effective models for developing approaches and
gathering new knowledge in the field of developmental disabilities and
sharing this knowledge both nationally and internationally, as well as
in our own states to improve the lives of people with developmental and
other disabilities. I am Fred Palmer, Director of the Boling Center for
Developmental Disabilities, Tennessee's University Center for
Excellence in Developmental Disabilities at the University of Tennessee
Health Science Center, and President of the Association of University
Centers on Disabilities.
The mission of the UCEDDs is to advance policy and practice, for
and with people with developmental and other disabilities, their
families and communities. As a network of 61 interdisciplinary Centers
across the United States and its Territories, we work to ensure full
participation in all aspects of living for individuals with
disabilities.
Since the early 1960s, when Congress established a small number of
research centers to study mental retardation, we have grown into a
national network where each University Center has developed its own
area(s) of expertise based on the needs of the local community, state,
and evolving expectations of people with disabilities nationwide to be
more included in community life. Authorized by the Developmental
Disabilities Assistance and Bill of Rights Act (Public Law 106-402) we
currently focus our work on serving as a national education and
training, service and information resource and research entity for our
nation.
We are extremely grateful that in fiscal year 2005, the Congress
increased funding for the UCEDDs by $5 million, bringing our current
funding to $31.5 million. This increase has provided us with an
opportunity that has not existed in over a decade--the opportunity to
increase the number of Centers in our network in order to better serve
people with disabilities. With this money, we will establish three new
Centers in states where there is a large minority population and/or
difficulties reaching people with disabilities due to geographic
hardships. The increased funding also provides each current Center with
additional dollars to conduct research and provide community supports
and services as outlined in the DD Act, essentially funding each
current Center at the level authorized in 2000. Additionally, the
increased funding allows the Administration on Developmental
Disabilities to compete one or two small National Training Initiative
grants which allow the grantee to conduct community-based training on a
topical area of national significance.
We are respectfully seeking an appropriation of $37 million for the
network of Centers for fiscal year 2006. This increase will allow
funding for the three new Centers to be increased to the same funding
as the existing 61 Centers, as well as to continue our ability to
establish additional Center grants in the five states that currently
have unserved and underserved populations, and support for four new
Centers that specialize in minority health disparities and education
issues.
AUCD believes that all people with disabilities must have the
opportunity to maximize their potential, and have equal and meaningful
access to all programs that help people be part of community life. We
have been honored and pleased to work with President Bush and his
Administration to carry out initiatives established in the New Freedom
Initiative. Through Executive Order 12317, ``Community-Based
Alternatives for Individuals with Disabilities'' we are working at the
state and national level to implement programs and secure funding to
rebalance the system of care for individuals with disabilities and
their families. We believe that the country is at a turning point in
time that can truly change the way that individuals with disabilities
are perceived and treated. By helping states rebalance their service
systems to serve people in the community first, as opposed to
institutional settings, we are truly working to achieve the President's
goals set forward in the Executive Order.
The UCEDDs focus their work in a concerted effort through the areas
of education and training at the university and community level;
research, both basic and applied; and service provision at the
individual and family level. Please allow me this opportunity to
provide you with some examples.
Education.--Quality of life in the community for individuals with
disabilities depends upon well-trained professionals. Positioned within
the university, UCEDDs educate professionals-in-training in
interdisciplinary approaches and provide continuing education for
professionals practicing in multiple fields relating to disabilities.
Whether the focus is on leadership, direct service, clinical or other
personnel training, these pre-service and continuing education programs
are geared to the needs of students, fellows, and practicing
professionals and have been essential in raising and defining the
educational standards of service across health, education, employment
and social service systems. Further, they have increased the capacity
of States to be responsive to the needs of individuals with
disabilities.
Each year, UCEDDs provide education and training to approximately
500,000 health, education, mental health, and policy-making
professionals, as well as people with disabilities and their families.
UCEDDs in communities nationwide provide this essential education and
training.
For example, one issue that Centers focus on nationally is positive
behavioral supports. One UCEDD in Oregon houses the Center on Positive
Behavioral Intervention and Support. The Center assists local schools
in identifying, adapting, and sustaining effective behavioral
practices, including school-wide discipline programs. Results from
their replication efforts in over 400 schools nationwide indicate that
their technical assistance and research has enhanced schools' capacity
to address behavioral challenges, diminish disruptions, reclaim
instructional time, and enhance quality and effectiveness of
instruction.
Through a partnership with the Centers for Disease Control and
Prevention (CDC), the network of UCEDDs are designing and disseminating
training materials on Down Syndrome and Spina Bifida. Educational
modules are being designed for use in medical schools for training
physicians in recognition and recommended treatments for these two
conditions. Materials from these efforts will be disseminated to
medical schools throughout the country.
Research.--UCEDDs engage in cutting edge research on a wide variety
of issues related to individuals with developmental disabilities and
their families. From basic research to applied research and policy
analysis, University Centers work to link research to public policy and
professional practice. By studying areas such as brain development,
autism spectrum disorders, and early literacy, UCEDD researchers are
learning how children and adults learn and how best to teach them.
UCEDDs lead in developing and evaluating new ideas and promising
practices that improve the lives of children and adults with
disabilities and their families and increase their access to quality
services. Many participate in federally established research projects
to study and disseminate information on the causes and prevention of
disabilities and chronic conditions.
One example of how research impacts upon policy and practice is a
collaborative effort between one UCEDD and its state Department of
Education and Department of Health and Human Services. Together they
are studying the issues of access to, and retention in, high quality
childcare for all children throughout the state. This multi-year,
interdepartmental initiative is studying ways to develop a coordinated
system of inclusive childcare and early education for all children,
including those who are at risk due to poverty, disability, social-
emotional and behavioral challenges, abuse, or language and cultural
differences. By implementing and studying various systems of support
for childcare providers, the UCEDD will be able to inform policymakers
in areas such as staff development and retention of childcare staff,
providing childcare support to TANF families, inclusive childcare
support for children with disabilities, and supporting children in
foster care.
Service.--UCEDDs provide direct services and supports to people
with developmental and other disabilities, their families, and
communities, including state-of-the-art diagnosis, evaluation, and
support services for children and adults with disabilities in health
care, cognitive development, behavior disorders, education, daily
living, and work skills. Moreover, through technical assistance to
other providers, they magnify the impact of their programs, reducing
disparities among individuals and communities.
In Ohio, one UCEDD is working with families living in rural
counties of Ohio who encounter many barriers to accessing quality care
for their children. Because most services for children with
disabilities are in urban areas, families in Appalachia were traveling
100 miles to the city for multiple evaluations by individual
disciplines. This resulted in a great expense in time and money for the
family. The Center now sends teams of providers to rural areas to
provide interdisciplinary care to families. They provide evaluation of
children, training for local healthcare providers, and support for the
families through a system of rural clinics. These clinics are improving
access of needed services to families and providers and help local
providers to better diagnose developmental disabilities such as
cerebral palsy, fetal alcohol syndrome, autism and other genetic
disorders.
UCEDDs also lead in improving the lives of people with disabilities
through new technologies. More than 20 UCEDDs including those in
Pennsylvania, Iowa, Texas, and Utah provide services that help
individuals assess their technology needs and get the equipment they
need to read, hear, speak, write, learn, work, play, and fully
participate in their communities.
Responding to National Needs.--UCEDDs are equipped to respond
quickly to emerging national needs. We are currently expanding our work
in the area of aging and disability. As we continue to see people with
disabilities living longer, aging parents need community support to
ensure the safety and well-being of their adult aged children when they
can no longer care for them and communities must be prepared. UCEDDs
are working in communities on many aging-related projects and working
with the White House Conference on Aging to ensure that aging and
disability is part of the national dialogue. We continue to work with
the federal government on policies and initiatives on emergency
preparedness for people with developmental and other disabilities
sharing much of our expertise and experience that came with the
September 11 disaster. Other national issues that have been addressed
by UCEDDs have included treatment and diagnosis of Autism and Related
Spectrum Disorders, reading disorders in children, design and
dissemination of training programs for direct support personnel in
developmental disabilities, provision of training in methods to support
employment for individuals with disabilities and improvement of housing
options for individuals with disabilities and their families.
I again ask that you consider our request for $37 million for the
network of UCEDDs so that we may expand our network to more adequately
serve our nation's growing population of Americans with developmental
and related disabilities and to address our nation's health
disparities.
Thank you for the opportunity to share this information about the
UCEDDs. Your careful consideration of our appropriation requests is
appreciated and we are happy to share more detailed information with
you at your request.
______
Prepared Statement of the Charles R. Drew University of Medicine and
Science
SUMMARY OF RECOMMENDATIONS FOR FISCAL YEAR 2006
1. A 6 percent increase for all institutes and centers at the
National Institutes of Health (NIH), specifically the National Center
for Research Resources (NCRR), the National Center for Minority Health
and Health Disparities (NCMHD), and the National Cancer Institute
(NCI).
2. Urge NCI to continue to support the establishment of
collaborative minority health comprehensive cancer centers at
historically minority institutions in collaboration with existing NCI
cancer centers. Continue to urge NCRR and NCMHD to collaborate on the
establishment of a cancer center at a historically minority
institution.
3. Urge the Department of Health and Human Services, particularly
the Office of Minority Health (OMH), to develop a focused effort on
faculty support to address the residency training programs at minority
medical institutions.
Mr. Chairman and members of the subcommittee, thank you for the
opportunity to present you with testimony. Charles R. Drew University
is one of four predominantly minority medical schools in the country,
and the only one located west of the Mississippi River.
Charles R. Drew University of Medicine and Science is located in
the Watts-section of South Central Los Angeles, and has a mission of
rendering quality medical education to underrepresented minority
students, and, through its affiliation with the University of
California Los Angeles (UCLA) at the co-located King-Drew Medical
Center, Drew provides valuable health care services to the medically
underserved community. Through innovative basic science, clinical, and
health services research programs, Drew University works to address the
health and social issues that strike hardest and deepest among inner
city and minority populations.
The population of this medically underserved community is
predominately African American and Hispanic. Many of these people would
be without health care if not for the services provided by the King-
Drew Medical Center and Charles R. Drew University of Medicine and
Science. This record of service has led Charles R. Drew University (in
partnership with UCLA School of Medicine) to be designated as a Health
Resources and Services Administration Minority Center of Excellence.
A RESPONSE TO HEALTH DISPARITIES
Racial and ethnic disparities in health outcomes for a multitude of
major diseases in minority and underserved communities continue to
plague this nation that was built on a premise of equality. As
articulated in the Institute of Medicine report entitled ``Unequal
Treatment: Confronting Racial and Ethnic Disparities in Health Care'',
this problem is not getting better on its own. For example, African
American males develop cancer fifteen percent more frequently than
white males. Similarly, African American women are not as likely as
white women to develop breast cancer, but are much more likely to die
from the disease once it is detected. In fact, according to the
American Cancer Society, those who are poor, lack health insurance, or
otherwise have inadequate access to high-quality cancer care, typically
experience high cancer incidence and mortality rates. Despite these
devastating statistics, we are still not doing enough to try to combat
cancer in our communities.
In response to these findings and the high cancer rate in our own
community, Charles R. Drew University of Medicine and Science proposes
that a Minority Health Comprehensive Cancer Center be built on its
campus.
The Center would specialize in providing not only medical treatment
services for the community, but would also serve as a research
facility, focusing on prevention and the development of new strategies
in the fight against cancer.
Mr. Chairman, the support that this subcommittee has given to the
National Institutes of Health (NIH) and its various institutes and
centers has and continues to be invaluable to our University and our
community. The dream of a state of the art facility to aid in the fight
against cancer in our underserved community would be impossible without
the resources of NIH.
To help facilitate the establishment of a Minority Health
Comprehensive Cancer Center at Charles R. Drew University of Medicine
and Science, the University is seeking support from the National
Institutes of Health's National Center for Research Resources (NCRR),
the National Center for Minority Health and Health Disparities (NCMHD),
and the National Cancer Institute (NCI).
ACADEMIC RENEWAL AND CLINICAL FACULTY RECRUITMENT
Some of the major challenges faced in sustaining high quality
graduate medical education programs in ``safety-net'' medical centers
with missions focused on the medically underserved, are directly
related to the lack of sufficient numbers of clinical faculty highly
trained in academic medicine. To address these challenges, a plan for
academic enrichment is proposed.
The plan is a strategic initiative to position Charles R. Drew
University in the first decade of the 21st Century, as a leader in
Urban Academic Health Sciences with an emphasis on training physicians
and other health professionals to meet the needs of the medically
underserved. The Plan for Academic Enrichment is an opportunity to
enhance the impact of Charles R. Drew University as a national center
of excellence in meeting the national, state, and local challenge of
preparing a diverse complement of excellent physicians and other health
professionals to close the health disparity gap by affording culturally
sensitive quality care to the medically underserved and economically
disadvantaged. A central component of the plan is the enrichment of
academic excellence through the recruitment of new, highly qualified
clinical teaching faculty, with solid research skills, to be members of
the Charles R. Drew College of Medicine faculty to strengthen both the
graduate and undergraduate medical education programs.
CONCLUSION
Despite our knowledge about racial/ethnic, socio-cultural and
gender-based disparities in health outcomes, the ``gap'' continues to
widen in most instances. 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 preventive care and/or research is
completely inaccessible either due to distance or lack of facilities
and expertise. This is a critical loss of untapped potential in both
physical and intellectual contributions to the entire society.
Even though institutions like Drew are ideally situated (by
location, population, and institutional commitment) for the study of
conditions in which health disparities have been well documented,
research is limited by the paucity of appropriate research facilities.
With your help, this cancer center will facilitate translation of
insights gained through research into greater understanding of
disparities in cancer incidence, morbidity and mortality and ultimately
to improved outcomes.
We look forward to working with you to lessen the burden of cancer
for all Americans through greater understanding of cancer, its causes,
and its cures. We also look forward to working with the Department of
Health and Human Services to address the residency training program
issues at Charles R. Drew University.
Mr. Chairman, thank you for the opportunity to present on behalf of
Charles R. Drew University of Medicine and Science.
______
Prepared Statement of the Council of State Administrators of Vocational
Rehabilitation (CSAVR)
Mr. Chairman and Members of the Senate Appropriations Subcommittee:
This testimony is submitted on behalf of the Council of State
Administrators of Vocational Rehabilitation (CSAVR) in conjunction with
the hearing held on March 2, 2005 before the Senate Subcommittee on
Labor, Health and Human Services, Education and Related Agencies.
The CSAVR is composed of the chief administrators of the State
Vocational Rehabilitation (VR) Agencies serving individuals with
physical and/or mental disabilities in the United States, the District
of Columbia and the Territories. These agencies constitute the state
partners in the State-Federal Program of Rehabilitation Services
provided under Title 1 of the Rehabilitation Act of 1973, as amended.
State VR agencies provide individualized services and supports to
eligible individuals with significant disabilities that are required
for them to go to work. These services may include, but are not limited
to, counseling and guidance, job training, higher education, physical
and mental restoration services, and assistive technology. Over 1
million individuals with disabilities are served annually. In fiscal
year 2004, these agencies placed over 213,000 individuals with
disabilities into competitive employment.
The CSAVR, founded in 1940 to furnish input into the State-Federal
Rehabilitation Program, provides a forum for state administrators to
study, deliberate, and act upon matters affecting the rehabilitation
and employment of individuals with disabilities. The Council serves as
a resource for the formulation and expression of the collective points
of view of state rehabilitation agencies on all issues affecting the
provision of quality employment and rehabilitation services to persons
with significant disabilities.
For fiscal year 2006, CSAVR recommends an increase in the
Vocational Rehabilitation (VR) appropriation of $125 million above the
President's budget request for fiscal year 2006. While the President's
budget proposes a 3.2 percent increase in funding for the Public VR
program, an increase of approximately 1.2 percent above the mandated
CPI called for in law, this increase is based on the elimination of
several smaller programs (Supported Employment (SE), Projects With
Industry (PWI), and Migrant and Seasonal Farm Workers (MSFW), with an
assumption that VR will continue to provide services, under Title 1 of
the Rehabilitation Act, to the individuals previously served under
these programs. The President's budget request for fiscal year 2006 is
between $22 and $25 million less than the consolidated funding for
these three programs; thus, VR would need additional funding for
services to accommodate for the elimination of these programs. In
addition to the proposed elimination of the SE, PWI, and MSFW programs,
which CSAVR does not support, H.R. 27, the House bill to reauthorize
the Workforce Investment Act (WIA), expands the requirements for VR to
provide transition services to students with disabilities. CSAVR also
anticipates that S. 9, the Senate bill to reauthorize the WIA, will
include expanded transition requirements, when it is reintroduced as a
free-standing bill. Based on the significant internal and external
challenges facing the Public VR Program, (i.e., staffing shortages,
state budget shortfalls, increased numbers of consumers seeking
services, and increased service expectations, the CSAVR believes that
an increased appropriation of $125 million above the President's budget
request for VR, for fiscal year 2006, is an appropriate recommendation.
THE PUBLIC VOCATIONAL REHABILITATION PROGRAM
The Public VR Program is one of the most cost-effective programs
ever created by Congress. It enables hundreds of thousands of
individuals with disabilities to go to work each year and become tax-
paying citizens. In fiscal year 2004, the VR Program assisted over 1
million individuals with disabilities who wanted to work, by providing
them with the job skills, training and support services they needed to
become employed. Of those served, more than 213,000 entered into
competitive employment. Funding for the VR Program requires a state
match of 21.3 percent, and creates a state-federal partnership that has
worked effectively for more than 85 years, and has assisted over 15
million individuals with disabilities to engage in employment and
become tax-paying citizens.
The Rehabilitation Act mandates that the annual Federal
appropriation for the VR Program grow at a rate at least equal to the
change in the Consumer Price Index (CPI) over the previous fiscal year.
While the mandate was intended to create a floor for the VR
appropriation, Congress has not appropriated funds above the mandated
CPI increase since 1999. This is particularly problematic because the
formula used to distribute these funds, which is based on a state's per
capita income and population, results in significant variations in the
increases in individual State's allotments. When the increase is
limited to the CPI increase and the formula is applied, not all states
receive increases that are equal to the annual rate of inflation. In
fiscal year 2005, 30 states did not receive the 1.977 percent required
CPI increase in their state allotment.
CHALLENGES FACING THE PUBLIC VR PROGRAM
Over the last several years, the Public VR Program has faced a
number of external challenges that have been compounded by the minimal
increases in Federal funding.
Special Education
Between 1990 and 2004, the federal appropriation for special
education increased by approximately 333 percent. During the same time
period, the federal appropriation for the Public VR Program increased
by only 22 percent. As a result of these very significant increases in
special education funding, an ever-increasing number of special
education students are exiting the education system and seeking adult
services, including Vocational Rehabilitation, in order to participate
in post secondary education, job training, and/or to go to work. In
addition, the House passed the Job Training Improvement Act in March
2005, which adds additional responsibilities to State VR agencies for
the provision of transition services, beyond those presently required
by current law. The Senate bill, S. 9, is also anticipated to add new
transition responsibilities for VR when it is reintroduced. These
additional requirements, if implemented effectively, will place a
tremendous burden on the fiscal and personnel resources of State VR
agencies, many of which are already sorely under-funded to meet the
needs of adults with significant disabilities who are seeking
employment.
Impact of the Workforce Investment Act of 1998 (WIA)
The Public VR Program is a mandatory partner in the WIA and, as
such, is required to contribute significant resources to support the
infrastructure and other costs associated with the operation of the
One-Stop Centers. While VR's involvement in State Workforce Investment
Systems is critically important, WIA has placed yet another financial
burden on an already strained program, further reducing the percentage
of VR funds that are available to provide services and supports to
eligible individuals with disabilities. In addition, the House bill to
reauthorize the WIA, H.R. 27, proposes to take significant resources
from the Public VR Program far beyond the resources contributed to the
One-Stop Centers under current law. The Senate bill, S. 9, also
requires additional resources from VR to fund the infrastructure costs
and other common costs associated with the operation of One-Stop
Centers.
Impact of the Ticket to Work and Work Incentives Improvement Act of
1999 (TWWIIA)
The TWWIIA was designed to address disincentives to work found in
the Social Security Disability Insurance Program (SSDI) and the
Supplemental Security Income Program (SSI), and to increase employment
opportunities for individuals enrolled in these programs. Research has
shown that less than one-half of one percent of these individuals
leaves the Social Security disability rolls each year as a result of
paid employment. The provisions in TWWIIA that provide extended
Medicare and Medicaid coverage to such individuals, when they enter or
return to the workforce, are expected to encourage more beneficiaries
to seek employment. Despite the establishment of a network of private
providers to offer employment services to beneficiaries, the majority
of beneficiaries, 90 percent, continue to seek services from State VR
Agencies. With only minimal increases in VR funding over the last
decade, this situation creates yet another challenge for the Public VR
Program.
Temporary Assistance for Needy Families (TANF)
Most states have had significant success in reducing their TANF, or
welfare to work caseloads. While TANF caseloads have been shrinking,
the composition of the remaining caseload has changed. A 2002 General
Accounting Office (GAO) report found that individuals with disabilities
and their family members represent approximately 44 percent of the
remaining TANF population. Since many of these individuals have
multiple and significant barriers to employment, state welfare agencies
are increasingly turning to State VR Agencies for assistance in serving
these individuals. With only minimal increases in funding, and 42 State
VR Agencies operating under an Order of Selection, a system of
prioritization whereby individuals with the most significant
disabilities are served first, it is becoming increasingly difficult,
if not impossible, for State VR Agencies to serve the increased numbers
of TANF referrals.
As stated earlier, the Public VR Program is one of the most cost-
effective programs ever created by Congress. Evidence of its success is
further established by:
--A 2002 Longitudinal Study of the Public VR Program which provided
evidenced based research that the VR Program is effective in
putting people with disabilities to work in good jobs with
opportunities for advancement.
--A fiscal year 2005 Program Assessment Rating Tool (PART), developed
by the Office of Management and Budget (OMB) to rate program
performance, rated the VR Program favorably, and in general,
successful in meeting its program goal.
--A report by the Social Security Administration, released annually,
that provides detailed information on the funds disbursed to
State VR Agencies, based on their successfully serving
beneficiaries on Social Security Disability Insurance (SSDI)
and Supplemental Security Income (SSI). In fiscal year 2004 SSA
projected a $470.3 million savings to the Trust Fund by the VR
Program, and established that every $1.00 that SSA spends on VR
results in a $6.00 savings.
In this era of federal and state budget deficits, and an increase
in the unemployment rate for individuals with disabilities, we urge you
to consider an increase in funding for the Public VR Program, through
which you can be assured to have positive outcomes, based on the three
factors mentioned above.
Our nation's ability to be competitive in a global economy depends
on the quality of our workforce. According to a report released by the
Department of Labor, Employment & Training Administration, during the
fiscal year 2005 Budget Briefing, the American workforce will be vastly
different than it is today, as the 21st century unfolds. Integrating
all available workers into the workforce, including workers with
significant disabilities, will be required for employers to meet the
demands of the 21st century economy. Significant numbers of large and
small employers have acknowledged that hiring individuals with
disabilities makes good business sense. It provides them with
dependable workers and access to a market of individuals with spending
power, which has historically been untapped. These same employers also
have long-standing, positive relationships with VR, to whom they look
to provide them with qualified workers with disabilities. Integrating
all available workers into the workforce, including workers with
disabilities, will require significant resources. VR's positive
relationships with employers, who rely heavily on the Public VR Program
to meet their hiring needs, further emphasizes and documents the need
for additional resources for VR.
______
Prepared Statement of the Florida Department of Education
Chairman Specter, and other distinguished members of the
Subcomittee: My name is Carlos R. Saavedra. I am the Director of the
Adult Migrant Program and Services Section of the Florida Department of
Education and submit my testimony for consideration by the Subcommittee
regarding the Workforce Investment Act, Title I, Section 167 National
Farmworker Jobs Program. The Florida Department of Education is the
grantee for the National Farmworker Jobs Program and has operated this
program successfully for past years, under the aegis of the Office of
Economic Development, the Comprehensive Employment and Training Act,
and the Jobs Training Partnership Act.
As you are aware, the President's budget for 2006 proposes to
eliminate the National Farmworker Jobs Program. This action appears to
be prompted by a reduction in the United States Department of Labor's
Employment and Training budget; the conviction that farmworkers will
receive similar services through the One-Stop Centers and the local
One-Stop Systems; and the belief that the National Farmworker Jobs
Program is ineffective and duplicates other programs.
There are many issues that remain to be addressed and resolved
first if the One-Stop Centers and the One-Stop Systems are to fulfill
the mandate to serve migrant and seasonal farmworkers as part of their
universe of clients. At the very least, state and local workforce
boards will need to deal with issues of program performance and the
manner for reaching farmworkers with services. Farmworkers live and
work in the margins of small rural towns, where the One-Stop Systems
have limited representation.
As regards performance, local workforce boards and their service
providers currently receive few, if any, incentives from the state
workforce boards to serve farmworkers and other populations with
special needs. Consequently, providers feel obliged to job place many
clients in the shortest time possible, with little consideration of
their need for remedial education and customized skills training, which
farmworkers and other special population with special needs require.
Under current conditions, local workforce boards and their providers
see little or no benefit to enrolling individuals with extremely low
education levels and high mobility rates, as is the case with migrant
farmworkers. This is the current state of services to migrant and
seasonal farmworkers via the One-Stop Centers and the One-Stop Delivery
System in many states where farmworkers are a significant part of the
overall workforce.
As regards farmworkers' access to services, the degree and mix of
employment, training and supportive services that farmworkers receive
in their communities today is possible because of funding by the
National Farmworker Jobs Program. The National Farmworker Jobs Program
supports customized service strategies with bilingual and bicultural
staff that serve as a bridge between the farmworker community and the
services and those educational programs offered by community and faith-
based organizations and public institutions that are attuned to the
needs of youth and adult learners. It is worth noting that the National
Farmworker Jobs Program has high performance standards and outcome
measures that are consistently met or exceeded. The outcomes for the
Farmworker Jobs and Education Program, as Florida's National Farmworker
Jobs Program is known, compares very favorably with national, state and
local outcomes of other employment and training programs.
In closing, I would like to share with the Subcommittee the story
of one individual who benefited from Florida's Farmworker Jobs and
Education Program and who was recently recognized by the Florida
Department of Education as an ``All American Success''.
Thank your for the opportunity to address this issue and ask that
the Subcommittee consider farmworkers among those for whom continued
federal support is essential.
______
Prepared Statement of Gallaudet University
Mr. Chairman and members of the Committee: I would like to express
my appreciation to you and to Congress for the generous support that we
received in fiscal year 2005 to continue maintaining and enhancing
academic programs and salaries at Gallaudet University. I am especially
grateful that Congress continues to support us during these challenging
times. I would like to provide you with some details concerning our
request for fiscal year 2006. In my testimony last year, I discussed
ongoing efforts by Gallaudet to diversify our sources of revenue and
support, and I also want to bring you up to date on this issue.
It is important to note that the proportion of the Federal
appropriation for Gallaudet University as a part of our total budget
was 17 percentage points less in 2004 than it was in 1981. During the
1980's and 1990's, we coped with limitations on Federal support by
increasing our tuition charges at a rate that exceeded growth in the
Consumer Price Index (CPI) during that period. However, in light of
concerns expressed by members of Congress and others, we have limited
the increase in tuition charges for fiscal year 2006 to 3 percent,
commensurate with general inflation. Very significantly, we have also
reduced staffing since 1989 by 20 percent. In addition, we have changed
our strategy for funding major construction and renovation projects.
When I became President in 1988, every building on the Kendall Green
campus had been constructed with 100 percent Federal funding. Since I
became President, every major construction or renovation project we
have conducted has been supported either by cost-sharing with the
Federal government or by private fundraising alone. For example, the
buildings constructed here most recently, the Kellogg Conference Hotel
at Gallaudet University and the Student Academic Center, were
constructed without any additional Federal appropriations. In 2003, we
completed a 4-year, $40 million capital campaign, and much of that
funding went to support construction of the Student Academic Center and
growth in our endowment. We have begun fundraising for a much-needed
new facility to house our language and communication programs, and I am
pleased to inform you that in November of last year we received a $5
million gift for this project from the Sorenson family of Utah. I
believe, therefore, that we have been very responsible in our requests
for Federal support and that we have done everything we could to seek
additional sources of funding during a period when Congress has faced
funding limitations.
Because of Congress' ongoing support of Gallaudet in fiscal year
2005, we have been able to maintain a competitive pay structure for our
employees while retaining the flexibility to meet the needs of a
changing student body. Given the unique student population we serve and
the communication skills our employees are expected to possess,
retaining skilled employees is very critical to our mission. Gallaudet
employees received general pay increases of 2 percent in fiscal year
2003, 3 percent in fiscal year 2004, and 2 percent in fiscal year 2005,
increases that are below what Federal employees in the region received
during the same timeframe, but in line with increases in the CPI. It
will be important for Gallaudet to ensure that our employees receive a
3 percent pay increase in fiscal year 2006, commensurate with current
increases in inflation. We are also requesting support for inflationary
increases in non-salary areas, especially in the cost of utilities,
insurance, and other professional fees.
The administration budget for fiscal year 2006 includes $104.557
million for Gallaudet, the same as our current year fiscal year 2005
appropriation. I have carefully analyzed our fiscal year 2006 funding
needs and have determined that in order to award a 3 percent salary
increase to our faculty and staff, and to meet other inflation-driven
increases, we need an increase of only $3.1 million, 3 percent above
our current appropriation.
While this minimal increase would allow us to continue with current
programs, it would not allow us to invest in programs that the
University considers of critical importance. Our three priorities for
fiscal year 2006 include the following:
Initiatives to increase accessibility to information from outside and
from within the university campus--$975,000
Information technology continues to be the ``great equalizer'' that
levels the playing field for those who are deaf or hard of hearing.
Ever-increasing access to visual media and the growing proliferation of
text-based communication provides more opportunities for deaf and hard
of hearing people in different aspects of society. Therefore, it is
essential that Gallaudet continue to invest in information technology
that will provide these kinds of opportunities for our students.
This funding will support the replacement of computers used daily
by students in the digital learning center at the Student Academic
Center, in student services programs, and in classrooms. It will also
support upgrades to the University's Web presence and to student e-
portfolio systems, which allow students to document their academic
progress, receive feedback from their instructors, and present
themselves electronically to potential employers.
Finally, Gallaudet owns the largest and most unique collection of
deafness-related materials in the world. Support will be given to the
digitization of Gallaudet's unique archives. Digitizing these archives
will make them more accessible to scholars and students at the
University, as well as scholars from outside the Gallaudet community.
Initiatives to enhance University programs for deaf students from non-
traditional and diverse backgrounds--$300,000
Gallaudet continues to seek ways to reach out to and create a more
positive educational climate for deaf students from non-traditional and
diverse backgrounds. Demographic trends point to a growing number of
students of color as well as a growing number of deaf students who are
placed in educational settings where sign language is not the primary
mode of communication.
Gallaudet recognizes that teacher preparation is essential in
supporting students of color. In order for the teachers to capitalize
on the expertise that Gallaudet has to offer, we seek to offer a
regional distance education degree program that will allow teachers to
receive training and earn a degree from Gallaudet without their having
to come to Washington, D.C. to earn all their credits.
In public education today, more deaf students are placed in
educational settings where sign language is not the primary mode of
communication. We believe it is important to have sufficient support
for students with such backgrounds who come to Gallaudet to help them
make the transition to a direct communication environment. It is also
important for those who are undecided about which college to attend to
understand that there is a strong program in place to help with such
transition. The additional funding will let Gallaudet study optimal
ways to enhance real-time captioning. In addition, it will support
upgrading of the New Signers Program that provides sign language
instruction to new students with weak or no signing skills.
Improvements to the Theatre Arts Department, including renovations of
the Elstad Auditorium and Annex--$950,000
Funding will enhance student learning by improving and expanding
the Theatre Arts program at Gallaudet and by updating and expanding the
Elstad Auditorium and Annex. As an institution that promotes the visual
arts, we must provide a solid theatre arts experience to our students.
Further, as the world's only university in which all programs and
services are specifically designed to accommodate deaf and hard of
hearing students, Gallaudet needs a first rate arena to promote direct
access for a broad audience.
Changes in technology in the last thirty years have been very
significant, and we are falling behind in our technical theatre.
Lighting and sound systems are outdated, as are computer programming,
costume shop equipment, and the set workshop. The building is not wired
for classrooms to have direct access to the information network, and
the box office is not wired to enable the use of effective and
efficient ticketing programs.
Access to theatre for deaf and hard of hearing people is often
limited to one or two interpreted performances in area productions. The
improvements to the Gallaudet University Theatre Arts program and
facilities would enable direct access by a broader audience, as well as
allow for opportunities for us to partner with other theatre companies,
such as the nationally acclaimed Arena Stage, to produce unique visual
performances. Students would experience ``smart'' classrooms and learn
how to use state-of-the-art theatrical technology. In addition, the
deaf and hard-of-hearing community would have direct access to many
theatrical performances. Finally, hearing audiences would be attracted
to and exposed to deaf theatre.
Total Program Requests--$2,225,000
The total request for Gallaudet University, including these three
critical program priorities is $109.9 million, representing a 5 percent
increase from our fiscal year 2005 appropriation. This increase would
have a significantly positive impact on the University's ability to
meet the increasing and changing needs of our students and those in the
field of deaf education.
I appreciate the challenges that Congress faces in making
appropriations decisions for fiscal year 2006, but experience has shown
that Gallaudet provides an outstanding return on the Federal dollars
that are invested here in terms of the educated and productive deaf
community that the nation enjoys as a result.
______
Prepared Statement of the Medical Library Association and the
Association of Academic Health Sciences Libraries
SUMMARY OF RECOMMENDATIONS FOR FISCAL YEAR 2006
(1) A 6 percent increase for the National Library of Medicine at
the National Institutes of Health and support for NLM'S urgent facility
construction needs.
(2) Continued support for the Medical Library community's role in
NLM'S outreach, telemedicine and health information technology
initiatives.
Mr. Chairman, thank you for the opportunity to testify today on
behalf of the Medical Library Association (MLA) and the Association of
Academic Health Sciences Libraries (AAHSL) regarding the fiscal year
2006 budget for the National Library of Medicine. I am Logan Ludwig,
Associate Dean for Library and Telehealth Services at Loyola University
Strich School of Medicine in Maywood, Illinois.
Established in 1898, MLA is a nonprofit, educational organization
of more than 1,100 institutions and 3,600 individual members in the
health sciences information field, committed to educating health
information professionals, supporting health information research,
promoting access to the world's health sciences information, and
working to ensure that the best health information is available to all.
AAHSL is comprised of the directors of libraries of 142 accredited
United States. and Canadian medical schools belonging to the
Association of American Medical Colleges. Together, MLA and AAHSL
address health information issues and legislative matters of importance
to the medical community through a joint task force.
Mr. Chairman, the National Library of Medicine, on the campus of
the National Institutes of Health in Bethesda, Maryland, is the world's
largest medical library. The Library collects materials in all areas of
biomedicine and health care, as well as works on biomedical aspects of
technology, the humanities, and the physical, life, and social
sciences. The collections stand at 5.8 million items--books, journals,
technical reports, manuscripts, microfilms, photographs and images.
Housed within the library is one of the world's finest medical history
collections of old and rare medical works. The Library's collection may
be accessed in the reading room or requested on interlibrary loan. NLM
is a national resource for all U.S. health science libraries through a
National Network of Libraries of Medicine. Increasingly, it is becoming
an international resource for world-wide research collaboration.
With respect to the Library's budget for the coming fiscal year, I
would like to touch briefly on four issues: (1) the growing demand for
NLM's basic services; (2) NLM's outreach and education services; (3)
NLM's telemedicine and informatics activities; and (4) NLM's facility
needs.
THE GROWING DEMAND FOR NLM'S BASIC SERVICES
Mr. Chairman, it is a tribute to NLM that the demand for its
services continues to steadily increase each year. An average of 500
million Internet searches are performed annually on NLM's MEDLINE
database, which provides access to the world's most up-to-date health
care information. MEDLINEplus, NLM's extensive electronic information
resource for the general public, is viewed approximately 200 million
times a year. This activity dwarfs previous usage of NLM's
bibliographic services, whether electronic or print. Moreover,
researchers, scholars, librarians, physicians, healthcare providers
from around the world, and the general public rely heavily on NLM and
its National Network of Libraries of Medicine to deliver health care
information everyday that is necessary to improve the quality of our
nation's healthcare system.
NLM also plays a critical role in maintaining the integrity of the
world's largest collection of medical books and journals. Increasingly,
this current and historical information is in digital form. This has
fundamentally changed how the library operates--how and what it
collects, how it preserves information, and how it disseminates
biomedical knowledge. NLM, as a national library responsible for
preserving the scholarly record of biomedicine, is developing a
strategy for selecting, organizing, and ensuring permanent access to
digital information. Regardless of the format in which the materials
are received, ensuring their availability for future generations
remains the highest priority of the Library.
Mr. Chairman, simply stated, NLM is a national treasure. I can tell
you that without NLM our nation's medical libraries would be unable to
provide the quality information services that our nation's healthcare
providers, educators, researchers and patients have come to expect.
Recognizing the invaluable role that NLM plays in our health care
delivery system, the Medical Library Association and the Association of
Academic Health Sciences Libraries join with the Ad Hoc Group for
Medical Research Funding in recommending a 6 percent increase for NLM
and NIH overall in fiscal year 2006.
OUTREACH AND EDUCATION
NLM's outreach programs are of particular interest to both MLA and
AAHSL. These activities, designed to educate medical librarians, health
care professionals and the general public about NLM's services, are an
essential part of the Library's mission.
The Library has taken a leadership role in promoting educational
outreach aimed at public libraries, secondary schools, senior centers
and other consumer-based settings. NLM's emphasis on outreach to
underserved populations assists the effort to reduce health disparities
among large sections of the American public. We were pleased that the
Committee again last year recognized the need for NLM to coordinate its
outreach activities with the medical library community.
PubMed Central
The medical library community also applauds NLM for its leadership
in establishing PubMed Central, an online repository for life science
articles. Introduced in 2000, PubMed Central was created by NLM's
National Center for Biotechnology Information and evolved from an
electronic publishing concept proposed by former NIH Director Dr.
Harold Varmus. The site houses articles from some 100 journals
including the Proceedings of the National Academy of Sciences and
Molecular Biology of the Cell.
The medical library community believes that health sciences
librarians should continue to play a key role in further development of
PubMed Central and we are pleased that medical librarians are members
of the NLM PubMed Central Advisory Committee. Because of the high level
of expertise health information specialists have in the organization,
collection and dissemination of medical literature, we believe our
community can assist NLM with issues related to copyright, fair use,
and information classification on the PubMed Central site. We look
forward to continuing our collaboration with the Library as this
exciting project continues to evolve this year.
MEDLINEplus
NLM estimates that the public conducts 30 percent of all MEDLINE
searching. MEDLINEplus [http://www.nlm.nih.gov/medlineplus/], a source
of authoritative, full-text health information resources from the NIH
institutes and a variety of non-Federal sources, has grown tremendously
in its coverage of health and its usage by the public. In January 2003,
two million unique users searched more than 600 ``health topics'' that
contain detailed consumer-focused information on various diseases and
health conditions. Recent additions to MEDLINEplus include illustrated
interactive patient tutorials, a daily news feed from the public media
on health-related topics, and the NIHSeniorHealth site [http://
nihseniorhealth.gov/], a collaborative project between NLM and the
National Institute on Aging.
Clinical Trials
Mr. Chairman, I also want to comment on another relatively new
service offered by NLM--its clinical trials database [http://
www.clinicaltrials.gov]. This listing of more than 7,000 federal and
privately funded trials for serious or life-threatening diseases was
launched in February of 2000 and currently logs more than 2 million
page hits per month. The clinical trials database is a free and
invaluable resource to patients and families interested in
participating in cutting edge treatments for serious illnesses. The
medical library community congratulates NLM for its leadership in
creating ClinicalTrials.gov and looks forward to assisting the Library
in advancing this important initiative.
Mr. Chairman, we applaud the success of NLM's outreach initiatives
and look forward to continuing our work with the Library again in
fiscal year 2006 on these important programs.
TELEMEDICINE AND MEDICAL INFORMATICS
Mr. Chairman, telemedicine continues to hold great promise for
dramatically increasing the delivery of health care to underserved
communities across the country and throughout the world. NLM has
sponsored over 50 innovative telemedicine related projects in recent
years, including 21 multi-year projects in various rural and urban
medically underserved communities. These sites serve as models for:
--Evaluating the impact of telemedicine on cost, quality, and access
to health care;
--Assessing various approaches to ensuring the confidentiality of
health data transmitted via electronic networks; and
--Testing emerging health data standards.
It is clear that telemedicine and medical informatics program such
as the Visible Human Project [http://www.nlm.nih.gov/research/visible/
visible_human.html]--male and female data sets consisting of MRI, CT,
and photographic cryosection images totaling 50 gigabytes and licenses
to scientists at more than 1,700 institutions around the world--will
play a major role in the delivery of health care and research in the
21st Century.
We are pleased that NLM has begun a new program to support
informatics research that addresses information management problems
relevant to disaster management. Medical librarians and health
information specialists have an important role to play in supporting
these cutting edge technologies, and we encourage Congress and NLM to
continue their strong support of telemedicine and other medical
informatics initiatives.
NLM'S FACILITY NEEDS
Mr. Chairman, over the past two decades NLM has assumed several new
responsibilities, particularly in the areas of biotechnology, health
services research, high performance computing, and consumer health. As
a result, the Library has had tremendous growth in its basic functions
related to the acquisition, organization, and preservation of an ever-
expanding collection of biomedical literature.
This increase in the volume of biomedical information as well as
expansion of personnel (NLM currently houses over 1,100 people in a
facility built to accommodate 650) has resulted in a serious shortage
of space at the Library. In addition, NLM's National Center for
Biotechnology Information [http://www.ncbi.nlm.nih.gov] builds
sophisticated data management tools for processing and analyzing
enormous amounts of genetic information critical to advancing the Human
Genome Project.
In order for NLM to continue its mission as the world's premier
biomedical library, a new facility is urgently needed. The NLM Board of
Regents has assigned the highest priority to supporting the acquisition
of a new facility. The medical library community is pleased that
Congress appropriated the necessary architectural and engineering funds
for facility expansion at NLM in 2003.
We encourage the subcommittee to continue to provide the resources
necessary to acquire a new facility and to support the Library's health
information programs.
Mr. Chairman, thank you again for the opportunity to present the
views of the medical library community.
______
Prepared Statement of the National Association of Children's Hospitals
overview
The National Association of Children's Hospitals (N.A.C.H.) is
pleased to have the opportunity to submit the following statement for
the hearing record in support of the Children's Hospitals' Graduate
Medical Education (CHGME) Payment Program in the Health Resources and
Services Administration (HRSA).
On behalf of the nation's 60 independent children's teaching
hospitals, N.A.C.H. very much appreciates the Subcommittee's early and
continuing commitment over several years to provide full, equitable GME
funding for these hospitals, giving them a level of federal support for
their teaching programs that seeks to be comparable to what all other
teaching hospitals receive through Medicare.
We also appreciate the Subcommittee's support for level funding of
$303 million for fiscal year 2005--the amount requested by President
Bush and recommended by N.A.C.H. Ultimately, this funding was reduced
to $301 million, or less than level funding, by a 0.8 percent across
the board reduction in non-defense, non-homeland security discretionary
spending programs in the final conference report.
For fiscal year 2006, we respectfully request an adjustment
recognizing the cost of inflation for CHGME, which would result in
total funding of $309 million, so that these institutions will have the
resources necessary to train and educate the nation's pediatric
workforce. Such an adjustment is important for a program with both
wage-related and medical teaching costs associated with it. Given the
challenges that the Subcommittee faces, we hope that at a minimum the
program can at least be maintained at level funding and not lose
further ground in fiscal year 2006.
N.A.C.H. is a not-for-profit trade association, representing more
than 125 children's hospitals across the country. Its members include
independent acute care children's hospitals, acute care children's
hospitals organized within larger medical centers, and independent
children's specialty and rehabilitation hospitals. N.A.C.H. seeks to
serve its member hospitals' ability to fulfill their four-fold missions
of clinical care, education, research and advocacy devoted to the
health and well being of all children in their communities.
Children's hospitals are regional and national centers of
excellence for children with serious and complex conditions. They are
centers of biomedical and health services research for children, and
they serve as the major training centers for future pediatric
researchers, as well as a significant number of our children's doctors.
These institutions are major safety net providers, serving a
disproportionate share of children from low-income families, and they
are also advocates for the public health of all children.
Although they represent less than 5 percent of all hospitals in the
country, the three major types of children's hospitals provide 41
percent of the inpatient care for all children, 42 percent of the
inpatient care for children assisted by Medicaid, and the vast majority
of hospital care for children with serious conditions such as cancer or
heart defects.
BACKGROUND: THE NEED FOR CHILDREN'S HOSPITALS GME
While they account for less than 1 percent of all hospitals, the
independent children's teaching hospitals alone train nearly 30 percent
of all pediatricians, half of all pediatric specialists and a majority
of future pediatric researchers. They also provide required pediatric
rotations for many other residents. They train about 4,000 residents
annually, and the need for these training programs is even more
heightened by the growing evidence of shortages in pediatric
specialists around the country.
Prior to initial funding of the CHGME program for fiscal year 2000,
these hospitals were facing enormous challenges to their ability to
maintain their training programs. The increasingly price competitive
medical marketplace was resulting in more and more payers failing to
cover the costs of care, including the costs associated with teaching.
The independent children's hospitals were essentially left out of
what had become the one major source of GME financing for other
teaching hospitals, Medicare, because they see few if any Medicare
patients. They received only 1/200th (or less than 0.5 percent) of the
federal GME support that all other teaching hospitals received under
Medicare.
This lack of GME financing, combined with the financial challenges
stemming from their other missions, was threatening their teaching
programs, as well as other important services.
Integral Safety Net Institutions.--In addition to their teaching
missions, the independent children's hospitals are a significant part
of the health care safety net for low-income children. In fiscal year
2003, children assisted by Medicaid represented, on average, 47 percent
of all discharges from free-standing acute care children's hospitals
and accounted for about 50 percent of all inpatient days of care. Yet
Medicaid, on average, reimbursed 80 percent of the cost of care
provided. Without disproportionate share hospital payments, those
reimbursements would only cover, on average, 73 percent of the cost of
care. The shortfalls in Medicaid payments for outpatient and physician
care are even greater. . The independent children's hospitals also are
essential providers of care for seriously and chronically ill children.
They devote more than 75 percent of their care to children with one or
more chronic or congenital conditions. They provide the vast majority
of inpatient care to children with many serious illnesses--from
children with cancer or cerebral palsy, for example, to children
needing heart surgery or organ transplants. In some regions, they are
the only source of pediatric specialty care. The severity and
complexity of illness and the services and resources that these
institutions must maintain to assure access to this quality care for
all children are also often inadequately reimbursed.
Mounting Financial Pressures.--The CHGME program, and its
relatively quick progress to full funding in fiscal year 2002, came at
a critical time. In 1997, when Congress first considered establishing
CHGME, a growing number of independent children's teaching hospitals
had financial losses, and many more faced mounting financial pressures.
More than 10 percent had negative total margins, more than 20 percent
had negative operating margins, and nearly 60 percent had negative
patient care margins. Some of the nation's most prominent children's
hospitals were at financial risk. Thanks to the CHGME program, these
hospitals have been able to maintain and strengthen their training
programs.
Continuing this critical CHGME funding is more important for these
hospitals than ever in light of state budget shortfalls in many states
and the resulting pressures for significant reductions in state
Medicaid spending. Because children's hospitals devote such a
substantial portion of their care to children from low-income families,
they are especially affected by cutbacks in state Medicaid programs.
Pediatric Workforce Development.--The important role the CHGME
program plays in the continual development of our nation's pediatric
workforce is not lost on the larger pediatric community, including the
American Academy of Pediatrics and Association of Medical School
Pediatric Department Chairs The pediatric community supports this
program and recognizes that CHGME is critical not only to the future of
the individual hospitals, but also to provision of children's health
care and advancements in pediatric medicine overall.
Lastly, many of the independent children's hospitals are a vital
part of the emergency and critical care services in their communities
and regions. They are part of the emergency response system that must
be in place for public health emergencies. Expenses associated with
preparedness add to their continuing costs in meeting children's needs.
CONGRESSIONAL RESPONSE
In the absence of any movement toward broader GME financing reform,
Congress in 1999 authorized the Children's Hospitals' GME discretionary
grant program to address the existing inequity in GME financing for the
independent children's hospitals. The legislation was reauthorized in
2000 through fiscal year 2005 and provided $285 million through fiscal
year 2001 and such sums as may be necessary in the years beyond.\1\
Congress passed the initial authorization as part of the ``Healthcare
Research and Quality Act of 1999'' and the reauthorization as part of
the ``Children's Health Act of 2000.''
---------------------------------------------------------------------------
\1\ The Lewin Group, an independent health policy analysis firm
calculated in 1998 that independent children's teaching hospitals
should receive approximately $285 million in federal GME support for
nearly 60 institutions to achieve parity with the financial
compensation provided through Medicare for GME support to other
teaching hospitals.
---------------------------------------------------------------------------
With the support of this Subcommittee, Congress appropriated
initial funding for the program in fiscal year 2000, before the
enactment of its authorization. Following enactment, Congress moved
substantially toward full funding for the program in fiscal year 2001
and completed that goal, providing $285 million in fiscal year 2002,
$290 million in fiscal year 2003, $303 million in fiscal year 2004 and
$301 million in fiscal year 2005. (In the last 2 fiscal years, the
funding levels are net of across-the-board reductions in all non-
defense, non-homeland security discretionary appropriations.) The
annual CHGME appropriations represent an extraordinary achievement for
the future of children's health care as well as for the nation's
independent children's teaching hospitals.
Health Resources and Services Administration.--The CHGME funding
appropriated by Congress is distributed through HRSA to 60 children's
hospitals according to a formula based on the number and type of full-
time equivalent (FTE) residents trained, in accordance with Medicare
rules, as well as the complexity of care and intensity of teaching the
hospitals provide. Consistent with the authorizing legislation, HRSA
allocates the annual appropriation in bi-weekly periodic payments to
eligible independent children's hospitals.
``Adequate'' Rating From Administration.--The Office of Management
and Budget gave CHGME an ``adequate'' rating in 2003, using its Program
Assessment Rating Tool (PART). The PART review said CHGME has a ``clear
purpose,'' is ``effectively targeted,'' has specific ``long-term
performance measures'' that focus on outcomes, and holds grantees
``accountable for cost, schedule, and performance results.''
FISCAL YEAR 2006 REQUEST
N.A.C.H. respectfully requests that the Subcommittee continue
equitable GME funding for the independent children's hospitals by
providing $309 million for the program in fiscal year 2006, which would
provide an adjustment for inflation over current funding. We, of
course, hope that such an adjustment could be provided, since it is
particularly important for a program that includes both wage-related
and medical teaching costs. Given the challenges that the Subcommittee
faces, we hope that the program at least can be maintained at level
funding and not lose further ground in fiscal year 2006.
Adequate, equitable funding for CHGME is an ongoing need.
Children's hospitals continue to train new pediatric residents and
researchers every year. Children's hospitals have appreciated very much
the congressional support they have received, including the attainment
of the program's authorized full funding level in fiscal year 2002 and
continuation of full funding with an inflation adjustment in fiscal
year 2003 and fiscal year 2004. Now, N.A.C.H. asks Congress to maintain
this progress by providing $309 million in fiscal year 2006.
Support for a strong investment in GME at independent children's
teaching hospitals is consistent with the repeated concern the
Subcommittee has expressed for the health and well-being of our
nation's children--through education, health and social welfare
programs. It also is consistent with the Subcommittee's repeated
emphasis on the importance of enhanced investment in the National
Institutes of Health (NIH) overall, and in NIH support for pediatric
research in particular, for which we are very grateful.
The CHGME funding has been essential to the ability of the
independent children's hospitals to sustain their GME programs. At the
same time, it has enabled them to do so without sacrificing support for
other critically important services that also rely on hospital subsidy,
such as many specialty and critical care services, child abuse
prevention and treatment services, poison control centers, services to
low-income children with inadequate or no coverage, mental health and
dental services, and community advocacy, such as immunization and motor
vehicle safety campaigns.
In conclusion, the Children's Hospitals GME Payment Program is an
invaluable investment in children's health. The future of the pediatric
workforce and children's access to quality pediatric care, including
specialty and critical care services, could not be assured without it.
Again, N.A.C.H. and the nation's independent children's teaching
hospitals are deeply grateful to the Chairman and the Subcommittee for
your continuing leadership on behalf of the teaching missions of
children's hospitals.
For further information, please contact Peters D. Willson, vice
president for public policy, N.A.C.H., at 703/797-6006 or
[email protected].
______
Prepared Statement of the National AHEC Organization
SUMMARY OF FISCAL YEAR 2006 RECOMMENDATIONS
1. Increase funding for the health professions and nursing
education programs under Title VII and Title VIII of the Public Health
Service Act to at least $550 million for fiscal year 2006.
2. Restore funding for Area Health Education Centers (AHECs) to
fiscal year 2003 level of $33.1 million.
3. Restore funding for Health Education Training Centers (HETCs) to
fiscal year 2003 level of $4.3 million.
Mr. Chairman, and members of the subcommittee, I am pleased to
present testimony on behalf of the National AHEC Organization.
I am Linda Kanzleiter, and I work for the Pennsylvania Statewide
AHEC Program and am a member of the National AHEC Organization (NAO).
NAO is the professional organization representing the Area Health
Education Centers (AHECs) and Health Education Training Centers
(HETCs). Together, we seek to enhance access to quality health care,
particularly primary care and preventative care, by improving the
supply and distribution of health care professionals through
community--academic partnerships
PERSISTENT WORKFORCE SHORTAGES
Mr. Chairman, contrary to what may be commonly understood,
persistent and severe shortages exist in a number of health
professions. Chronic shortages exist for all health professions in many
of our nation's underserved communities, and substantial shortages
exist in all communities for some professions such as nursing,
pharmacy, and certain allied health fields. While the supply of
physicians in the non-primary care specialties may well be adequate,
supply and distribution problems for primary care physicians, nurses,
and many allied health professionals are undermining access and quality
in many of our nation's communities.
Historically, the supply of and demand for health care
professionals has waxed and waned in a manner that produced cycles of
shortage and excess. However, it is reasonable to believe that the
current shortages are of a different and more persistent nature. First,
the breadth and depth of shortages are greater than at any time in the
past. More disciplines are in short supply, more sites of care
(hospitals, nursing homes, home care agencies, and clinics) are
experiencing shortages, and the duration of vacancies is longer.
Second, the demand for health care services is steadily and inexorably
increasing due to the aging population and the advances in medical
technology. Third, the health care provider population is aging itself.
Fourth, the resources with which the health care industry might respond
to shortages are inadequate to the challenges. Due to the squeeze of
managed care, provider institutions are unable to increase salaries,
and due to cuts in government funding, educational institutions are
unable to expand class sizes. Finally, the career opportunities
available to women, who dominate the health care professions, have
expanded greatly.
Health care workforce shortages are occurring in a context of an
increasingly aged population with greater needs for health care
services. In addition, health technology steadily produces advances
that require a higher level of training and sophistication on the part
of health care providers. These trends are occurring at time when the
number and the level of academic preparedness of students entering the
health professions are decreasing.
In addition, minority and disadvantaged populations are egregiously
under represented in the health professions. Given the demographic
trends in the United States, minority populations constitute a major
untapped source of future health care professionals.
THE ROLE OF AHECS
Mr. Chairman, the AHEC/HETC network is the federal government's
most flexible and efficient mechanism for addressing a wide and
evolving variety of health care issues on a local level. Through AHECs
and HETCs, national initiatives can be targeted to the areas of
greatest need and molded to the particular issues confronting
individual communities. Whether the issue is the nursing shortage,
bioterrorism preparedness, access for the uninsured, or recruiting
under-represented minority students into the health professions, AHECs
and HETCs, where they exist, can assemble the appropriate local
collaboration and apply federal, state, and local resources in a
precise and cost-effective manner.
Since our inception almost thirty years ago, AHECs have partnered
with local, state, and federal initiatives and educational institutions
in providing clinical training opportunities to health professions and
nursing students in rural and underserved communities. We bring the
resources of academic health centers to bear in addressing the health
care needs of these communities. Currently, there are 48 AHEC programs
and 180 centers located in 43 states and the District of Columbia. AHEC
programs are based at schools of medicine, which are the federal AHEC
grant recipients, and are implemented through the regional offices
(centers), each of which serves a defined geographic area.
AHEC PROGRAMS PERFORM FOUR BASIC FUNCTIONS:
1. They develop and support the community based training of health
professions students, particularly in underserved rural and urban
areas. Exposing health professions students to underserved communities
increases the likelihood that they will return to these communities to
practice.
When considering access, Pennsylvania faces some unique challenges.
For example, The Pennsylvania Department of Health estimates that about
1,259,441 people in our Commonwealth do not have health insurance of
any kind. Of that number, 109,883 are persons within the five counties
we serve. The National Association of Community Health Centers
estimates that, in Pennsylvania, at least 1,479,087 people are
``without a primary care provider''. This figure represents more than
12 percent of Pennsylvania's total population (12,281,054). This number
is likely higher because eight counties, including Carbon & Lehigh,
were not included in their data.
Pennsylvania AHECs have developed a network of over 972 health care
training sites, 3,632 students and residents, and 1,045 on-site
preceptors providing service to patients at these training centers.
2. They provide continuing education and other services that
improve the quality of community-based health care. Improving the
quality of care also enhances the retention of providers in underserved
communities, particularly community health centers.
A crucial part of our mission in Pennsylvania involves linking
fourth year medical students with Medical Preceptors, mentors and
teachers in the community. Our goal is to help facilitate the process
that allows the students to become familiar with the issues encountered
in rural communities. The student can also begin to establish
relationships, which will prove beneficial should they decide to
practice in a rural area. In this way, Pennsylvania AHECs support the
viability and, often, the continued, independent existence of small
community hospitals.
The Northeast Pennsylvania Area Health Education Center surveyed
physicians in the rural counties it serves to clarify issues
surrounding continuing education. The overwhelming response was that
there was a desire for more information about bioterrorism, and that it
should be accessible online. The Pennsylvania Department of Health
subsequently created the Learning Management System (LMS), a web-based
system for education and information-sharing regarding bioterrorism and
other public health issues. The LMS delivers emergency preparedness
training and access to up to date information to the hands of health
professionals, day or night. The LMS serves as an information library,
a forum for discussion groups, and means of surveying program content
online.
3. They recruit under-represented minority students into the health
professions through a variety of programs targeted at elementary
through high schools. Minority students are grossly under-represented
in the health professions and are more likely to practice in
underserved communities.
The Northwest Pennsylvania AHEC has developed a program called the
Great Hospital Adventure Puppet Presentation. The multi-media
presentation includes a live puppet show, video movie, coloring book,
classroom poster, and an interactive question and answer session. This
program promotes health career awareness and encourages healthy
behaviors for children aged four to nine. The classroom materials and
activities emphasize non-traditional gender roles and multi-cultural
images. The goal of the presentation is to attract children of all
genders, backgrounds and cultures to health professions.
The Northeast Pennsylvania AHEC established a summer camp called
``Exploring Careers in Health'' for high school students who
demonstrate a strong interest in medicine or health care. The camp is a
weeklong program held on the campus of Keystone College. Students must
apply for admission, and the camp provides an in-depth look at the
health care field by participation in workshops with health
professionals, hands-on activities, and field trips. Students are
encouraged to explore numerous career choices as health professionals.
Additionally, the Northeast Pennsylvania sponsors a program for
area teachers and guidance counselors called ``Seeds for Success.'' The
program offers an overview of health career opportunities at colleges,
universities and post-secondary institutions in the surrounding area.
The response to the program was overwhelmingly positive.
4. They facilitate and support practitioners, facilities, and
community based organizations in addressing critical local health
issues in a timely and efficient manner.
Only 13 percent of primary care physicians in Pennsylvania serve in
rural communities. However, 42 of the state's 67 counties are
predominantly rural and 7 counties are completely rural. These
startling facts are the driving force behind the health care
professions workforce development resolution.
THE ROLE OF HETCS
The HETC programs were created to address the public health needs
of severely underserved populations in border and non-border areas.
Currently, HETC programs exist in 12 states and are supported by a
combination of federal, state, and local funding, the majority of which
comes from non-federal sources.
Because the majority of preventable health problems are due to
health behaviors and the environment, HETCs focus on community health
education and health provider training programs in areas with severely
underserved populations. HETCs target minority groups, disadvantaged
communities, and communities with diverse culture and languages.
COLLABORATIVE EFFORTS
Virtually all AHEC and HETC programs are collaborative in nature.
They routinely partner with a wide variety of federal, state, and
locally funded programs. Examples of these collaborations include
health professions schools, primary care residency programs, community
health centers, primary care associations, geriatric education centers,
the National Health Service Corps, public health departments, health
career opportunity programs, school districts, and foundations.
Additionally, AHECs and HETCs often go beyond their core functions
to undertake a wide variety of innovative programs, tailored to
specific health issues affecting the communities they serve. Because
health issues vary from community to community, the programs of each
AHEC and HETC also vary considerably. AHECs and HETCs respond to
changing health and health workforce needs in a flexible and timely
manner. Examples of current issues for which we are directing our
resources are:
1. The nursing shortage.--Currently, AHECs and HETCs are working
with schools of nursing, state nursing associations, and others to
increase the number of qualified applicants to nursing schools,
increase minority enrollment in nursing schools, expand the number of
community-based nursing training sites, and re-train nurses who wish to
re-enter the profession.
The Northcentral Pennsylvania AHEC facilitated the Nursing Forum,
titled Joining Healing Hands: Communication, Collaboration, and
Teambuilding, to enhance regional nursing recruitment and retention
efforts within their 10 county region on Friday, February 27, 2004 in
Lewisburg, Union County. Participating nurses, nurse administrators,
healthcare representatives, and nursing educators explored ways to
strengthen communication, leadership skills, and teamwork to create a
shared vision and commitment to quality healthcare. Skill sets
encouraged at the forum promoted a shared commitment to quailty
healthcare, fostered positive outcomes, encouraged inclusion of
collaborative educational efforts, and supported the recruitment and
retention of a diversified workforce.
2. Bioterrorism education.--Currently, AHECs and HETCs are working
with public health departments to educate health and public health
professionals on surveillance, reporting, risk communication,
treatment, and other responses to the threat of bioterrorism.
3. The National Health Service Corps (NHSC).--AHECs and HETCs
undertake a variety of programs related to the placement and support of
NHSC scholars and loan repayment recipients.
The Pennsylvania State University AHEC has actively supported the
NHSC ``SEARCH'' program by interviewing prospective students,
recommending community preceptors, and monitoring placements of
students each summer in rural and underserved sites.
4. Expansion of community health centers.--AHECs and HETCs are
collaborating with health professions schools, primary care
associations, and community health centers to increase the supply of
providers willing and able to work in community health centers. In
addition, AHECs/HETCs are working directly with CHC providers to
improve the quality of care.
JUSTIFICATION FOR FUNDING RECOMMENDATIONS
Mr. Chairman, I respectfully ask the Subcommittee to support our
recommendations to increase funding for the health professions and
nursing education programs under Title VII and Title VIII of the Public
Health Service Act to at least $550 million for fiscal year 2006. Our
recommendations are consistent with those of the Health Professions and
Nursing Education Coalition (HPNEC).
The AHEC and HETC programs improve access to primary and
preventative care through community partnerships, linking the resources
of academic health centers with local communities. AHECs and HETCs have
proven to be responsive and efficient models for addressing an ever-
changing variety of community health issues.
However, AHECs and HETCs have not yet fully realized their
potential to be a nationwide infrastructure for local training and
information dissemination. In order to realize that potential
additional federal investment is required. That is why we are
requesting that in fiscal year 2006, you restore funding to fiscal year
2003 levels of $33.4 million for AHECs and $4.3 million for HETCs.
______
Prepared Statement of the State Educational Technology Directors
Association (SETDA)
NCLB TITLE II, PART D: ENHANCING EDUCATION THROUGH TECHNOLOGY
On behalf of SETDA representing all fifty states, DC, and American
Samoa, we encourage you to restore NCLB Title II, Part D--Enhancing
Education through Technology (EETT) program to its fiscal year 2004
funding level of $692 million. In fiscal year 2005, this program
sustained a 28 percent cut, which has not yet been realized in schools
across the country due to the grant award cycle. This testimony
documents how states leverage EETT funding to ensure the ability of
states, districts, and schools to implement all Titles within NCLB,
specifically:
--Enhancing data systems to ensure that educators can utilize real-
time data to inform sound instructional decisions and ensure
that states are able to meet AYP.
--Closing the achievement gap by providing access to software, online
resources, and virtual learning aligned to academic standards
for instruction and learning.
--Supporting the development of highly qualified teachers by
providing online courses, communities of practice, and virtual
communication that ensure flexibility and access.
The data and examples illustrate how forty-nine states and DC
(representing 99 percent of federal education technology funding)
utilize EETT funding. 81 percent of school districts in this country
receive and use EETT funding. States maintain 5 percent for technical
assistance and administration and disseminate the remaining 95 percent
equally between two programs:
1. The Formula Grant Program by which high need districts receive
an allotment based upon poverty rates.
2. The Competitive Grant Program through which states establish
areas of focus for districts to compete for the grants. Each grantee
must include at least one high need district.
THE MYTH OF EETT
Some believe that EETT is utilized primarily to purchase computers
or ``the boxes in the back of the classroom.'' The SETDA National
Trends Report and examples provided demonstrate that this is not the
case. The majority of this funding supports the purchase of curriculum,
provides professional development to ensure teachers are highly
qualified, and builds systems for assessment, data and accountability
mechanisms. Some grantees may use small amounts of the funding to
purchase hardware integral to the students' education, i.e. laptops
that children in rural areas bring home to expand learning
opportunities; however the overwhelming majority of the funding is
utilized to support the successful implementation of NCLB that is
highlighted below.
meeting ayp and improving student achievement through data systems
Key Facts
Data management and accountability requirements are steadily rising
and states have a limited capacity for meeting these requirements. EETT
funds are the only source of federal funding for most states to use in
developing the data systems needed to report AYP results mandated
through NCLB. These funds are being used toward data systems that
impact both instructional and administrative aspects of education. On
the instructional side, the National Trends Report cites many examples
of EETT funds being used to train teachers in understanding how to use
data effectively to individualize learning and to make real-time
modifications to instruction in order to best meet the needs of every
learner. The report also cites multiple examples of state and district-
wide data management systems that allow for increased accountability
and reporting.
While professional development and student achievement are still
extremely important in EETT, the program has seen a tremendous increase
in the number of states (78 percent) that are using these technology
funds for three other key NCLB priorities--assessment, outreach to
parents, and data-driven decision-making.
Examples
The Philadelphia Instructional Management System (IMS) is part of
the School District of Philadelphia's comprehensive reform effort that
includes new resources, a standardized curriculum, after school
programs, and professional development. IMS provides teachers and
administrators with immediate data on student learning aligned to State
and District standards. A benchmark assessment, given every five weeks,
allows teachers to differentiate instruction, provide immediate
remediation, and identify those students who need additional
assistance. Teachers, coaches, and administrators have access to
student performance data through an online system. This system also
provides suggested resources and strategies teachers can use to meet
unique student needs. In 2003, before these technology tools were
provided to teachers, only 9 of the 40 initial participating schools
had met AYP; and 15 were identified for Corrective Action. At the end
of the 2004 school year, 25 schools met their AYP targets, and only 10
remained in Corrective Action II.
In Vermont, school districts are using EETT funds to develop local
student data systems or to join the statewide Vermont Data Consortium
which is working with the Department of Education to create a statewide
Education Data Warehouse. These data efforts support teachers using
data to inform instruction and facilitate reporting of AYP data.
States are finding that as they make more and more data available,
teachers need help in understanding and using this data to inform their
teaching and to help individualize and improve student learning. A good
example of this is in the Blackfoot School District in Idaho where EETT
funds are used with particular attention to K-12 mathematics. Through
this program, teachers use data to identify student needs and then use
technology to meet these needs. They are also able to provide ongoing
professional development for teachers that otherwise would have been
impossible without the Title II D funds.
Maryland is using EETT funds for curriculum management systems. If
a child is not mastering certain standards, this provides them with
lesson plans and remediation activities to help get them up to par.
HELPING TO CLOSE THE ACHIEVEMENT GAP
Key Facts
The requirement for EETT funds to be targeted to high need
districts ensures that students who are most at risk will benefit from
additional opportunities. EETT funds are helping to close the
achievement gap by providing students with access to software, web
courses, and virtual learning opportunities that are aligned to state
standards. This is particularly important in areas where teachers in
certain disciplines are difficult to find, such as foreign language,
Advanced Placement (AP), or higher level science and math courses. With
access to online opportunities, students in rural or high need areas
have opportunities similar to other students in the state.
Many states have steered EETT funds to core-curricular areas, such
as reading, math and science, by establishing content priorities in
their competitive grant processes: 74 percent of states created funding
priorities in reading or writing, while 38 percent focused on
mathematics.
Examples
The Missouri eMINTS program provides classrooms with advanced
software, intense professional development and Internet access to
support standards-based instruction. Three years of data from a quasi-
experimental evaluation of the eMINTS program showed a significant
improvement in third and fourth grade achievement on the Missouri
Assessment Program (MAP) test results for African Americans. The study
also noted that the achievement gap was closed between those African
American students who participated in the program and White students
who did not. The success of the eMINTS program is now being replicated
in the state of Utah.
Researcher Dale Mann (ASBO, 2003) cited a direct correlation
between pupil performance and technology in instruction through West
Virginia's Basic Skills/Computer Education program. The study found
that while per capita income had not changed between 1991 and 1998, the
infusion of technology was the single factor that accounted for the
state moving from 33rd among the states for student achievement to
11th.
In Virginia, EETT funds have been used to develop an online
Advanced Placement school. This program provides benefits to Virginia's
students who are most in need, primarily rural and urban students, who
otherwise would not have access to AP teachers or courses. A similar
West Virginia project provides foreign language opportunities using
online technologies. Preliminary findings through a scientifically-
based research evaluation indicate that courses delivered online are as
effective as courses delivered face to face--expanding the
opportunities for closing the achievement gap between students in
remote areas.
In region 4 of New York City, EETT funds have allowed student
access to Cyber English, Social Studies, Math and Science classes. High
schools are no longer limited by time and space and learning has become
a 24/7 activity. This model has improved school attendance, engaged
previously uninterested students, allowed students from diverse
neighborhoods to collaborate, and finally provided parents a vehicle
for becoming involved in their teenager's education.
In North Carolina, the cuts will result in a limitation on nine
very successful Community Technology Learning Centers. These centers
have offered after-school and weekend programs for needy students and
their parents. Most of these centers will either close or drastically
scale back their services without EETT funding.
North Dakota has established a rural consortium to implement the
``Unified Education Project (UEP), which focuses on creating
individualized learning plans for each student based on his or her
strengths and weaknesses. Using an electronic portfolio, the UEP helps
teachers track needs and provide appropriate instruction and
remediation, allows the students to view standards and expectations and
assess their own work accordingly, and encourages parent communication.
The UEP allows for individualized instruction to ensure that schools
and districts can meet AYP.
IMPROVING TEACHER TRAINING, RETENTION, AND RECRUITMENT
Key Facts
EETT requires that at least 25 percent ($147,000,000) of all EETT
funds be used for professional development purposes, although most
states use considerably more. EETT funds help to increase the access by
providing online options that give teachers anytime, anyplace access to
quality professional development. This is critical to ensure that
teachers have the opportunity to increase content knowledge, improve
instruction, and become highly qualified teachers.
Examples
Algebra I is often a predictor for success in high school and
beyond. Louisiana implemented an on-line Algebra I course to provide
additional opportunities for student achievement. Preliminary
evaluations indicate that students in the on-line course, with similar
pre-test scores are showing more significant achievement gains compared
to the control group as indicated below:
------------------------------------------------------------------------
Post-test
Group Pre-test (spring)
(fall) mean mean
------------------------------------------------------------------------
Algebra I Online Students..................... 13.3 17.2
Control Students.............................. 13.4 15.6
------------------------------------------------------------------------
In Nevada, a middle school science partnership is beginning to show
evidence of closing the achievement gap in participating schools. The
partnerships between the University of Nevada, Reno and five rural
Nevada school districts provides professional development to teachers
to make them better able to assess their students and use technology to
increase student achievement in math. The ability of these teachers to
have access to the rigorous university research and the professional
development to effectively bring about increases in student achievement
in science.
The North Carolina IMPACT Model Schools Grant provides personnel,
connectivity, hardware, software, and professional development to
impact teaching and learning to improve student achievement in
participating elementary or middle schools. One initial finding from
this evaluation is that participating schools have dramatically
improved their ability to attract and retain teachers. Teachers who are
scheduled to retire often choose to stay in these IMPACT schools,
others request transfers into them, and new teachers clamor to be
hired. ``These teachers like the way technology is changing the way
they teach, and the enthusiasm with which their students approach
learning,'' says Frances Bryant Bradburn, Director of Instructional
Technology for the North Carolina Department of Public Instruction.
In the center of Wyoming, there are many small, rural school
districts that do not have the capacity to create aggressive staff
development plans. The local Board of Cooperative Education Services
formed a partnership between six districts focused on helping teachers
to improve instruction through learning environments. For the first
time, classes are using smart boards, establishing wireless
connections, conducting Internet research, and attending compressed
video classes.
In Massachusetts, reports from independent evaluators of the EETT
grant projects and the year-end reports submitted by grant recipients
show substantial improvement in teacher technology literacy. The use of
the state's online interactive Technology Self-Assessment Tool (TSAT)
helps in measuring the progress of teachers' technology skills in the
different levels. For example, in a Gloucester Public Schools' project,
there was an increase from 8.5 percent to 27 percent in the number of
educators at the Proficient level and a decrease from 33.5 percent to
20 percent in number at the Early Technology level (the lowest level).
Iowa utilized EETT funds to implement comprehensive professional
development programs for teachers targeted at core subject areas.
Initial results from one consortium focusing on mathematics demonstrate
an increase in student achievement among 4th grade students compared to
the control group. Iowa is seeing similar results in reading throughout
the state.
IMPACT OF CUTTING EETT
Education technology is about more than technology--it's about
education. The EETT program supports every tenet and goal of the No
Child Left Behind Act. It would be impossible to effectively implement
NCLB without the technical expertise and leadership the EETT program
brings. As representatives of the states and districts who make the
most critical use of educational technology, we urge you to restore the
funding to $692 million, the funding level that was in place before the
Omnibus appropriations in November 2004.
Not only does EETT help improve student achievement through
technology, it is an efficient use of federal funds. Dale Mann (ASBO,
2003) notes that districts have two options when trying to increase
reading scores by one month in grade-level gains: decreasing class size
or utilizing technology. Class-size reduction would cost approximately
$636 per student per year compared to $86 for instructional technology.
EETT provides additional opportunities to help increase student
achievement.
The targeted funds for educational technology that are available
through the EETT program are still very much needed as we work to
ensure that all students are ready to compete in the global economy. It
is unrealistic to assume that these technology funds and the leadership
and innovation that accompany them would be effectively managed through
other existing education title programs such as Title I and Title IIA.
These Title programs have not received additional funds to pay for the
mission critical technology components of their initiatives. Other
Title programs, unlike EETT, support narrowly defined student
populations and training purposes rather than the broader mission of
supporting all students and all programs as EETT currently does.
Finally, the leadership and expertise needed to implement successful
data driven decision making, curriculum management systems, online
professional development, and reporting processes for NCLB would be
lost if there was an attempt to subsume educational technology planning
and implementation under these already established programs.
About SETDA--http://www.setda.org
The State Educational Technology Directors Association (SETDA) is
the principal association representing the state directors for
educational technology. SETDA's membership includes educational
technology directors and staff from the state departments of education
of all fifty states, the District of Columbia and American Samoa.
______
Prepared Statement of the National Education Knowledge Industry
Association
NEKIA appreciates the opportunity to inform the Subcommittee of
NEKIA's appropriations proposals for fiscal year 2006. The mission of
our association is to advance the development and utilization of
research-based knowledge for the improvement of the academic
performance of all children. NEKIA's members are committed to finding
new and better ways to support and expand high-quality education
research, development, dissemination, technical assistance, and
evaluation at the federal, regional, state, tribal, and local levels.
Our appropriations proposals seek greater federal investments that
will support the use of research-based knowledge in America's K-12
classrooms and spur the implementation of the No Child Left Behind Act
and the Education Sciences Reform Act. These two laws ushered in a new
era of evidence-based education in which classroom teachers are
required to use instructional practices based on scientifically based
research. Our proposals for fiscal year 2006 are also designed to
address both greater demand for evidence-based education and under-
funded supply.
NEKIA'S PROPOSALS ARE BASED ON THREE CRITICAL POINTS
1. Now is the time to enhance and expand the federal system of
education research, development, dissemination, and technical
assistance.--Federally supported programs--specifically the Regional
Educational Labs, the R&D Centers, the Comprehensive Centers and
Comprehensive School Reform--are playing a vital role in meeting the
tremendous needs for research-based practices and technical assistance.
Each of these programs fills a unique role in the spectrum of knowledge
utilization--from basic research to applied research, from development
and dissemination to technical assistance, and ultimately student
achievement. Given that more than 20,000 U.S. public schools are not
making adequate yearly progress and 10,000 schools are in need of
improvement under the No Child Left Behind Act, we must become more
aggressive in using research-based education solutions in the
classroom.
NEKIA's members are fully supporting the implementation of No Child
Left Behind through applied research, development, dissemination,
technical assistance, and evaluation programs. For example:
2. Current federal support for education research, development,
dissemination, and technical assistance lags far behind other federal
research investments.--While the No Child Left Behind Act clearly
requires educators to use instructional practices and innovations
supported by research, the Department of Education spends less than one
percent of its budget on research, development, and statistics.
Education is a $745 billion industry representing an estimated 7.2
percent of the gross domestic product. However, only 0.03 percent is
spent on research and development. That is only three cents for every
hundred dollars spent on education. In comparison, other agencies' R&D
budgets as percentage of their discretionary spending: Defense, 17
percent; NASA, 68 percent; Energy, 37 percent; HHS, 42 percent; NSF, 74
percent; and Agriculture, 4.6 percent. In other words, the Department
of Education's research budget has been and remains among the smallest
of any federal agency.
3. To address this capacity crisis we urge Congress to double its
investments in education knowledge utilization over the next 3 years.--
Not only would increased investments help meet demand, they would also
address a number of high priorities such as:
--Improving teacher quality by providing research based information
on best practices to teacher training institutions as well as
information and technical assistance to schools districts
implementing professional development programs.
--Helping special populations of students meet state adequate yearly
progress goals. These special populations include English
language learners, special needs children, and students in
rural areas.
--Working with educators to interpret and manage a variety of data
about student performance and classroom instruction.
--Scaling up school improvement efforts at the local level so that
reform efforts in single schools can expand to districtwide
initiatives.
To adequately respond to the capacity crisis and meet these
priorities, NEKIA proposes the following investments:
Priority Investment.--Fund the Regional Educational Laboratories at $70
million--an increase of $3 million over fiscal year 2005
The Regional Educational Laboratories are the nation's key
institutions for applied education research and development that
respond to the needs of educators and policy makers. A 2000 Department
of Education independent evaluation found that educators considered the
labs among the most trusted institutions in the nation for research
support and reported they were highly responsive to customers. They are
also highly responsive to local and regional needs. Regional governing
boards--representing educators, parents, and businesses from each state
of each lab region--set research and development priorities for each
lab. The ability to respond to customers in their regions helps keep
the laboratories' work focused on real world needs and creating valid
research, development, tools and assistance in the successful
implementation of the No Child Left Behind Act. Without the Regional
Labs, the chain is broken. Without the regional labs, the link between
basic research and technical assistance would cease to exist.
Unfortunately, the Regional Education Lab program is at risk. The
President's budget for fiscal year 2005 proposes to eliminate funding
for the program. Last year, the Administration proposed eliminating the
labs. Fortunately, Congress acted in a bipartisan way to fund it. We
hope Congress will do so again for fiscal year 2006.
Priority Investment.--Fund the Research and Development Centers
(included in the Research, Development, and Dissemination Line)
at $170 million--an increase of $5 million over fiscal year
2005
The centers address enduring issues of national significance in
education through sustained and focused research programs. They address
specific topics such as early childhood development and learning,
student learning and achievement, at-risk students, adult learning, and
education policy. The research done by the R&D centers is used by
regional labs to develop programs, strategies and assessment tools
which in turn are adapted by technical assistance providers
(Comprehensive Centers) for the training and tools to implement their
own programs to assist districts and schools.
Priority Investment.--Fund the Comprehensive Regional Assistance
Centers at $60 million--an increase of $3 million over fiscal
year 2005
The purpose of Title II of the Education Sciences Reform Act (ESRA)
and specifically the newly reformed Comprehensive Centers program
authorized within it, is to serve as part of a national technical
assistance and dissemination system, which provides comprehensive
technical assistance services to states, districts, tribes and schools
in administering and implementing school reform efforts under No Child
Left Behind. Their focus is to help schools and districts improve
opportunities for all children to meet content and performance
standards. Next year (fiscal year 2006), the 20 new centers will be
fully operational. The new centers will include the scope of work of
the current Comprehensive Regional Assistance Centers, the Eisenhower
Regional Mathematics and Science Consortia, and the Regional Technology
in Education Consortia.
Priority Investment.--Fund the Comprehensive School Reform program at
$233 million--an increase of $30 million over last year
Comprehensive School Reform targets the neediest schools. Forty-
five percent of CSR schools have poverty rates of 75 percent or
greater--almost double the rate of Title I schools. And, almost half
(46 percent) of CSR schools are low performing at the time of funding.
CSR schools have baseline achievement scores lower than Title I school
wide programs (in reading and math) at the time of funding. Finally,
CSR Schools address the whole school and are more likely to use
research-based models and measurable goals for student performance.
Unfortunately, the Comprehensive School Reform program is at risk. The
President's budget for fiscal year 2005 proposes to eliminate funding
for the program. We hope Congress will act in a bipartisan fashion to
preserve it.
NEKIA is very heartened by the continuing interest Congress shows
in the work of our member organizations to provide the research-based
tools our children and teachers need to succeed. If we are to ensure
even greater success for all our children, we must increase the federal
investment in knowledge utilization efforts.
Thank you. We appreciate your consideration of our proposals.
______
Prepared Statement of the Science, Technology, Engineering, and
Mathematics (STEM) Education Coalition
On behalf of the science, technology, engineering, mathematics,
education and business groups listed here, we thank you for your
efforts to secure $179 million for the fiscal year 2005 Math and
Science Partnership program at the U.S. Department of Education (ED).
The STEM (Science, Technology, Engineering, and Mathematics) Education
Coalition greatly appreciates your continued support to improve STEM
education at all levels.
It is imperative that the work continues and additional funding be
provided to the ED MSPs so we can ensure that all students receive a
world-class education in science and math. We understand in these tight
fiscal times, Congress is unable to provide the NCLB authorization of
$450 million for the MSPs, but we do support substantial increases in
order to prepare for the science assessments that will be required in
2007. Therefore, we urge you to support the President's request of $269
million for the fiscal year 2006 Math and Science Partnerships under
Title II, Part B of NCLB.
Additionally, we urge you to oppose the creation of a new
initiative that would redirect $120 million of the funds away from the
ED state-based MSP programs to create a new federal grant program. This
would require a change to the NCLB statute, cut funds to the states,
and greatly reduce state flexibility to meet their most critical needs.
Funding for the ED MSPs goes directly to the states as formula
block grants. States provide these funds through competitive grants to
local partnerships of schools, higher education institutions and others
for reform efforts to meet the NCLB math and science education
obligations. Most grants go to high-need districts so they can
strengthen teacher professional development and increase student
performance in science, mathematics, and technology.
In summary, we strongly urge Congress to fund the fiscal year 2006
ED Math and Science Partnerships at $269 million and to oppose efforts
to redirect $120 million of these funds away from the states.
If we can provide any additional information or answer questions,
please contact Patti Curtis at 202.785.7385.
______
Prepared Statement of Teach For America
Mr. Chairman, Senator Harkin and Members of the Subcommittee: Thank
you for the opportunity to submit testimony regarding the President's
fiscal year 2006 budget proposal, which includes $4 million for Teach
For America under the Corporation for National and Community Service.
Mr. Chairman and Senator Harkin, I applaud your commitment to national
service and desire to help AmeriCorps realize its full potential.
I would like to take this opportunity to discuss Teach For America
and our current growth plans. I will also focus on the $4 million line
item in the President's fiscal year 2006 budget under the Corporation
for National and Community Service and explain why it is critical to
Teach For America's ability to grow to scale.
As you know, Teach For America is the national corps of outstanding
recent college graduates of all academic majors who commit 2 years to
teach in urban and rural public schools and become lifelong leaders in
the effort to ensure that all children in our nation have an equal
chance in life. We are a private, national non-profit organization, as
well as one of the original AmeriCorps programs. Our teachers receive a
salary from their local school district as well as education awards
through AmeriCorps. These education awards can be used for graduate
level education courses necessary to obtain teacher certification, to
pay back qualified student loans, or for future education.
Since 1990, when I founded Teach For America, our organization has
grown from 500 corps members teaching in 5 regions to what will soon be
3,200 corps members teaching in 22 regions during the 2005-2006 school
year. Teach For America corps members are having an impact throughout
our nation, from St. Louis to Philadelphia, and from New Mexico's
Navajo Nation to the Rio Grande Valley in South Texas.
TEACH FOR AMERICA MEETS CRITICAL NEEDS
Our mission is to build a movement to eliminate the educational
inequality that exists in our country today. By the age of nine,
children in low-income areas are already three grade levels behind in
reading ability (Source: National Center of Education Statistics,
2000). As these children progress in the educational system, this
achievement gap only widens, to the point that a child who grows up in
a low-income community is seven times less likely to graduate from
college than a child growing up in a more privileged area (Source:
Education Trust, 1998).
Our corps members help close the achievement gap for the students
they reach during their 2-year commitment. At the same time, they gain
insight and added commitment that shapes them into an important
leadership force, working from inside of education and from other
sectors, for long-term change.
OUR PROGRAM
We recruit the most highly sought-after college graduates of all
academic majors, career interests, and backgrounds from leading
colleges and universities. We then select corps members who demonstrate
records of achievement and leadership, as well as a commitment to
expanding opportunity for children in low-income areas.
Admission to Teach For America is highly selective, with
approximately 12 percent of our applicants gaining admission to the
corps. Of our 2004 corps members, 93 percent held leadership positions
on their campuses or in their communities. They earned average SAT
scores of 1,310 and average GPAs of 3.5. In addition, 31 percent of
corps members are people of color.
This year, 17,319 young people applied for only 2,000 slots as
first year teachers. At many top schools, Teach For America is
considered one of the most prestigious post-graduate opportunities.
This year, 12 percent of Spelman's senior class applied to the corps.
And at top, larger universities, Teach For America attracted
significant portions of the student body: 12 percent of Yale's seniors
applied, as did 8 percent of seniors at Princeton and Harvard. All are
competing for the opportunity to teach in America's neediest schools.
Corps members are selected into Teach For America if they
demonstrate strong leadership characteristics such as achievement
orientation, critical thinking, personal responsibility for success,
and the ability to influence and motivate others, as well as high
expectations for students and families in low-income communities and
the desire to work relentlessly toward this particular mission.
Those selected attend a summer training institute where corps
members teach in local public summer schools and participate in a full
afternoon and evening schedule of professional development activities.
We aim to ensure that corps members internalize the overarching
approach utilized by the most successful teachers in urban and rural
areas; and that they gain skills in instructional planning and
delivery; building a strong classroom culture; literacy development;
and teaching the specific content-area and grade-level they will be
teaching.
Following the institute, corps members assume teaching positions in
school districts in 22 urban and rural areas. They are clustered in
schools and receive extensive ongoing support and professional
development through Teach For America and through local teacher
education programs.
Following their 2-year commitments, corps members can remain in
teaching (and about 60 percent teach for at least a third year). We
expect that they will ask themselves how they can have the greatest
possible impact on the challenges they and their students experienced
during their 2 years, and we provide a network of resources and support
that they can tap into as they continue working in educational and
social reform throughout their lives.
IMMEDIATE IMPACT ON COMMUNITIES AND STUDENT ACHIEVEMENT
Our success in recruiting and preparing exceptional classroom
teachers has led education policy makers to highlight our impact on
disadvantaged communities. Teach For America corps members impact the
academic prospects of their students during their first 2 years in the
classroom and continue to impact the quality of education in low-income
communities beyond their initial commitments.
A 2004 independent study by Mathematica Policy Research, Inc
revealed Teach For America corps members in elementary grades affected
greater gains than would typically be expected in a year. The study
also showed corps members even outpaced fully certified and veteran
teachers in their schools in moving their students ahead academically.
To put corps members' value-added in context, Mathematica concludes the
impact of having a Teach For America teacher compared to a non-Teach
For America teacher (including veteran and certified teachers) is 65
percent of the impact of reducing class size from 23 to 15 students
(and is substantially less expensive). The impact of having a corps
member versus another novice teacher is greater than the impact of
reducing class size by eighty students. This study essentially
replicated the results from an earlier study on Teach For America's
impact by Stanford's Center for Research in Education Outcomes.
Another way we evaluate corps member impact is through a bi-annual
survey of principal satisfaction conducted by Kane, Parsons &
Associates, Inc., an independent research firm. In a June 2004 survey
by Kane, Parsons & Associates, principals credit Teach For America
teachers as having positive effects on their schools and on student
achievement. Nearly three out of four principals reported that corps
members are more effective than their other beginning teachers. And
principals rated corps members as good or excellent on multiple
indicators of effective teaching, including:
--90 percent--Instructional planning
--95 percent--Motivation and dedication to teaching
--96 percent--Achievement orientation and drive to succeed
--93 percent--Working with other faculty and administrators
--92 percent--Having high expectations for students; and
--93 percent--Assuming responsibility for student achievement.
LONG-TERM IMPACT
Teach For America is building a force of leaders and citizens with
a lifelong commitment to addressing the issues they witness during
their 2 years of service. Education Week, a leading national journal of
K-12 education, profiled Teach For America's alumni in an article
titled ``Most Likely To Succeed'' and called Teach For America a
``leader-making machine.''
According to a survey conducted in the fall of 2004, our alumni are
deeply influenced by their Teach For America experience:
--Nationally, 63 percent of our alumni are working full-time in
education, 39 percent as K-12 teachers and 28 percent as
administrators, 4 percent in higher education, and 9 percent in
education-related non-profits and other positions in the field
of education; and
--Nearly 200 Teach For America alumni have founded a school or a non-
profit organization.
Even more striking is the extent to which Teach For America alumni
have already assumed leadership in the broader effort to improve
education--they are running many of the most highly acclaimed charter
schools in the country; they are turning around major urban schools as
principals; they are winning some of the highest accolades teachers can
win (as state and city teachers of the year); they are serving on
school boards and advising Governors and Members of Congress on
education policy; and they are leading model education reform, public
health and economic development initiatives.
TEACH FOR AMERICA NEEDS INCREASED FUNDING TO GROW TO SCALE
Teach For America is in the midst of a 5-year expansion plan to
more than double the size of its teacher corps. Currently, Teach For
America has over 3,000 teachers in 22 communities and a budget of under
$39 million. In the 2006-2007 school year, Teach For America will have
nearly 3,500 corps members and will need to raise a budget in excess of
$50 million. At that scale, Teach For America teachers will reach more
than 300,000 public school students every day in this country's lowest-
income neighborhoods.
Seventy-five percent of our funding comes from private sources,
much of it from the local communities where our teachers teach. We have
a highly diversified base of more than 2,000 private donors from all
over the country. Top donors include Don and Doris Fisher's Pisces
Foundation; the Broad Foundation; New Profit; the Atlantic
Philanthropies; and Wachovia Corporation.
To raise our expanded budget, we must significantly increase our
private funding base while growing our federal funding proportionately.
With adequate federal funding, we can expand to reach more communities
and engage more recent college graduates while continuing to provide
highly qualified teachers for America's neediest classrooms. The
Corporation for National and Community Service's $4 million fiscal year
2006 budget line item would allow us to maintain our current ratio of
federal to private funding and enable us to execute our growth plan.
CONCLUSION
I hope you will agree that we have demonstrated all the
characteristics of an exemplary AmeriCorps program: we recruit talented
young people into competitive positions in critical areas of public
need; we have a significant impact in the communities we serve; we
influence the civic commitment and career path of our corps members;
and we leverage our public support for significant private resources.
As we continue our efforts to more than double in size and reach
hundreds of thousands of children each year, we seek your support so
that Teach For America can expand its scale and impact. Mr. Chairman
and Members of the Subcommittee, we hope you will support the
President's request for $4 million for Teach for America in the fiscal
year 2006 budget.
______
Prepared Statement of the United Tribes Technical College
SUMMARY OF REQUEST
For 36 years United Tribes Technical College (UTTC) has been
providing postsecondary vocational education, job training and family
services to Indian students from throughout the nation. Our request for
fiscal year 2006 funding for tribally controlled postsecondary
vocational institutions as authorized under Section 117 of the Carl
Perkins Vocational and Applied Technology Act is:
--$8.5 million under Section 117 of the Perkins Act, which is $1.1
million over the fiscal year 2005 enacted level of $7,406,250.
This funding is essential to our survival, as we receive no
state-appropriated vocational education monies.
--Ensure that the provision that has been included since fiscal year
2002 in the Labor-HHS Education Appropriations Acts that waived
the regulatory requirement that we utilize a restricted
indirect cost rate is continued.
--Funding for renovation of our facilities, many of which are
original to the Fort Abraham Lincoln army installation. A
recent study commissioned by the Department of Education shows
a facility need for UTTC of $49 million.
--We support the recommendations of the American Indian Higher
Education Consortium, including $32 million for the
Strengthening Developing Institutions Program for tribal
colleges (Section 316).
RESTRICTED INDIRECT COST ISSUE
Beginning in fiscal year 2002 the Labor-HHS-Education
Appropriations Act provided that notwithstanding any law or regulation,
that Section 117 Perkins grantees are not required to utilize a
restricted indirect cost rate. We thank you for taking this action, and
ask that it be continued in the fiscal year 2006 Act. We also point out
that the pending Perkins reauthorization bills, S.250 and H.R. 366,
contain a provision that would exempt Section 117 grantees from the
requirement to utilize a restricted indirect cost rate.
In 2001, the Department of Education, for the first time, directed
Indian grantees (both Section 116 and 117 grantees) to apply a
``restricted indirect cost rate'' to their grants. This means each
tribal grantee must obtain another indirect cost rate--exclusively for
its Perkins Act grant--from its cognizant federal agency (which in most
cases is the Inspector General for the Department of the Interior.)
The Department gave two reasons for applying a restricted rate to
these Perkins Act Indian programs: (1) The 1998 Amendments to the
Perkins Act (Sec. 311(a)) prohibits the use of Perkins Act grant funds
to supplant non-federal funds expended for vocational/technical
programs. This ``supplement, not supplant'' limitation previously
applied to State grants, only; and (2) A long-standing Department of
Education regulation (promulgated years before the 1998 Perkins
Amendments) automatically applies the restricted indirect cost rate
requirement to any Department of Education grant program with a
``supplement, not supplant'' provision.
UTTC has no quarrel with the bases and objectives of the
``supplement, not supplant'' rule and seeks no change to this statutory
provision. The primary targets of this rule are States and possibly
local government entities that run vocational education programs with
State or local funds.
By contrast, however, UTTC has little or no ability to violate this
rule, as we have no source of non-federal funds to operate vocational
education programs. Unlike States, we have no tax base and no source of
non-federal funds to maintain a vocational education program. We depend
on federal funding for our vocational/technical education program
operations. Despite our inability to violate the supplanting
prohibition, we are, nonetheless, being disadvantaged by a Department
of Education regulation intended to enforce the prohibition against
States who do have the ability to supplant.
--Impact of new requirement on grantees.--Under DoEd regulations, a
``restricted indirect cost rate'' makes unallowable certain
indirect costs that are considered allowable by other federal
programs. Primarily, these are costs that DoEd believes the
grantee would otherwise incur if it did not receive a Perkins
grant, such as the cost of the grantee's chief officer and
heads of departments who report to the CEO, as well as the
costs of maintaining offices for these personnel.
Prohibiting the Perkins grant from contributing its appropriate
share to the grantee's indirect cost pool will most likely mean that
other federal programs operated by the grantee would be expected to
pick up a great share of the indirect cost pool. This outcome may well
result in objections from the other program agencies that do not want
to bear costs properly attributable to the Perkins grant.
We are caught between conflicting federal agency requirements and
will find ourselves unable to recover the necessary share of indirect
costs attributable to each of the federal programs we operate.
UTTC PERFORMANCE INDICATORS
UTTC has:
--An 85 percent retention rate
--A placement rate of 95 percent (job placement and going on to 4-
year institutions)
--A projected return on federal investment of 11 to 1 (2003 study
comparing the projected earnings generated over a 29-year
period of UTTC Associate of Applied Science graduates with the
cost of educating them.)
--The highest level of accreditation. The North Central Association
of Colleges and Schools has accredited UTTC again in 2001 for
the longest period of time allowable--10 years or until 2011--
and with no stipulations. We are also the only tribal college
accredited to offer on-line associate degrees.
The demand for our services is growing and we are serving more
students.--For the 2003-2004 school year we enrolled 661 Indian
students. For the 2004-2005 school year we enrolled 753 Indian
students, for an increase of 13 percent over the prior year. The 753
Indian students we enrolled are from 54 tribes and 22 states. The
majority of our students are from the Great Plains states, an area
that, according to the 2001 BIA Labor Force Report, has an Indian
reservation jobless rate of 75 percent. UTTC is proud that we have an
annual placement rate of 95 percent. We hope to enroll 2000 adult
students by 2008.
In addition, as of the 2004-2005 year, we have served 257 students
in our Theodore Jamerson Elementary school, and 226 children in our
infant-toddler and pre-school programs.
The total population for whom we provided direct services to in the
2004-2005 academic year is 1,236. This is an increase in our overall
total population of 17 percent from the 2003-2004 school year.
UTTC course offerings and partnerships with other educational
institutions.--We offer 17 AAS degrees, 5 of which have been approved
to be offered on-line, and 11 certificate degrees. We are accredited by
the North Central Association of Colleges and Schools. Our course which
has the highest number of students is the Licensed Practical Nursing
program.
We are very excited about the recent additions to our course
offerings, and the particular relevance they hold for Indian
communities. These programs are: (1) Injury Prevention, (2) On-Line
Education, (3) Nutrition and Food Services, (4) Tribal Government
Management, (5) Tourism, and (6) Tribal Environmental Science.
Tribal Environmental Science.--Our newest course offering is Tribal
Environmental. Science. It is being established through a National
Science Foundation Tribal College and Universities Program grant. The
5-year project will support UTTC in planning and implementing an
innovative environmental science program. The program is slated to be
developed by this summer, beginning with a three week intense student
skill-building program. The course work will lead to a 2-year associate
of applied science degree in Tribal Environmental Science.
Injury Prevention.--Through our Injury Prevention Program we are
addressing the injury death rate among Indians, which is 2.8 times that
of the U.S. population. We received assistance through Indian Health
Service to establish the only degree-granting Injury Prevention program
in the nation. Injuries are the number one cause of mortality among
Native people for ages 1-44 and the third for overall death rates.
On-Line Education.--We are working to bridge the ``digital divide''
by providing web-based education and Interactive Video Network courses
from our North Dakota campus to American Indians residing at other
remote sites and as well as to students on our campus. This semester
have 45 students, a number of whom are campus-based, taking on-line
courses. We are accredited by the North Central Association of Colleges
and Schools to provide on-line associate degrees. This approval is
required in order for us to offer federal financial aid to students
enrolled in these on-line courses.
On-line courses provide the scheduling flexibility students need,
especially those students with young children. Our on-line education is
currently provided in the areas of Early Childhood Education, Injury
Prevention, Health Information Technology, Nutrition and Food Service
and Elementary Education. We are the only tribal college accredited to
offer on-line associate degrees.
Computer Technicians.--In the second year of implementation, the
Computer Support Technician program is at maximum student capacity. In
order to keep up with student demand, we will need more classrooms,
equipment and instructors. Our program includes all of the Microsoft
Systems certifications that translate into higher income earning
potential for graduates.
Nutrition and Food Services.--UTTC will meet the challenge of
fighting diabetes in Indian Country through education. As this
Subcommittee knows, the rate of diabetes is very high in Indian
Country, with some tribal areas experiencing the highest incidence of
diabetes in the world. About half of Indian adults have diabetes
(Diabetes in American Indians and Alaska Natives, NIH Publication 99-
4567, October 1999).
We offer a Nutrition and Food Services Associate of Applied Science
degree in an effort to increase the number of Indians with expertise in
nutrition and dietetics. Currently, there are only a handful of Indian
professionals in the country with training in these areas. Future
improvement plans include offering a Nutrition and Food Services degree
with a strong emphasis on diabetes education and traditional food
preparation.
We also established the United Tribes Diabetes Education Center to
assist local tribal communities and our students and staff in
decreasing the prevalence of diabetes by providing diabetes educational
programs, materials and training. We published and made available
tribal food guides to our on-campus community and to tribes.
Tribal Government Management/Tourism.--Another of our new programs
is tribal government management designed to help tribal leaders be more
effective administrators. We continue to refine our curricula for this
program.
A recently established education program is tribal tourism
management. We developed the core curricula for the tourism program and
are partnering with three other tribal colleges (Sitting Bull, Fort
Berthold, and Turtle Mountain) in this offering. The development of the
tribal tourism program was timed to coincide with the planned
activities of the national Lewis and Clark Bicentennial in 2003.
Job Training and Economic Development.--UTTC is a designated
Minority Business Center serving Montana, South Dakota and North
Dakota. We also administer a Workforce Investment Act program and an
internship program with private employers.
Economic Development Administration funding was made available to
open a ``University Center.'' The Center is used to help create
economic development opportunities in tribal communities. While most
states have such centers, this center is the first-ever tribal center.
Upcoming Endeavors.--We are seeking to develop a Memorandum of
Understanding with the BIA's Police Academy in New Mexico that would
allow our criminal justice program to be recognized for the purpose of
BIA and Tribal police certification, so that Tribal members from the
BIA regions in the Northern Plains, Northwest, Rocky Mountain, and
Midwest areas would not have to travel so far from their families to
receive training. Our criminal justice program is accredited and
recognized as meeting the requirements of most police departments in
our region.
We are also interested in developing training programs that would
assist the BIA in the area of provision of trust services. We have
several technology disciplines and instructors that are capable of
providing those kinds of services with minimum of additional training.
We also provide training in health records technology that that fit
within the training needs of the Indian Health Service.
Department of Education Study Documents our Facility/Housing
Needs.--The 1998 Vocational Education and Applied Technology Act
required the Department of Education to study the facilities, housing
and training needs of our institution. That report was published in
November 2000 (``Assessment of Training and Housing Needs within
Tribally Controlled Postsecondary Vocational Institutions, November
2000, American Institute of Research''). The report identified the need
for $17 million for the renovation of existing housing and
instructional buildings and $30 million for the construction of housing
and instructional facilities.
We continue to identify housing as our greatest need. We have a
current waiting list of 64 families. Some families must wait from 1 to
3 years for admittance due to lack of available housing. In 2003-2004,
we were forced to find housing off campus for 52 families. In 2004-2005
we housed 105 families off campus, a 50 percent increase over the prior
year. In order to accommodate the enrollment increase, UTTC partners
with local renters and two county housing authorities (Burleigh,
Morton).
UTTC has a new 86-bed single-student dormitory on campus. It is
already completely full as are all of our other dormitories and student
housing. To build the dormitory, we formed an alliance with the U.S.
Department of Education, the U.S. Department of Agriculture, the
American Indian College Fund, the Shakopee-Mdewakanton Sioux Tribe and
other sources for funding. Our new dormitory has at the same time
created new challenges such as shortages in classroom, office and other
support facility space. However, more housing must be built to
accommodate those on the waiting list and to meet expected increased
enrollment. We also have housing which needs renovation to meet safety
codes.
Thank you for your consideration of our request. We cannot survive
without the basic vocational education funds that come through the
Department of Education's Perkins funds. They are essential to the
operation of our campus and essential to the welfare of Indian people
throughout the Great Plains region and beyond.
______
RELATED AGENCIES
Prepared Statement of the National Federation of Community Broadcasters
Thank you for the opportunity to submit testimony to this
Subcommittee regarding the appropriation for the Corporation for Public
Broadcasting (CPB). As the President and CEO of the National Federation
of Community Broadcasters, I speak on behalf of nearly 257 community
radio stations and related organizations across the country. Nearly
half our members are rural stations and half are minority controlled
stations. In addition, our members include many of the new Low Power FM
stations that are putting new local voices on the airwaves. NFCB is the
sole national organization representing this group of stations which
provide service in the smallest communities of this country as well as
the largest metropolitan areas.
In summary, the points we wish to make to this Subcommittee are
that NFCB:
--Requests $430 million in funding for CPB for fiscal year 2008, a
$30 million increase over the fiscal year 2006 advance
appropriation;
--Requests $45 million in fiscal year 2005 for conversion of public
radio and television to digital broadcasting. Also supports
funding for the Public TV interconnection system;
--Requests that advance funding for CPB is maintained to preserve
journalistic integrity and facilitate planning and local
fundraising by public broadcasters;
--Requests report language to ensure that CPB utilizes digital funds
it receives for radio as well as television needs;
--Supports CPB activities in facilitating programming and services to
Native American and Latino radio stations;
--Supports CPB's efforts to help public radio stations utilize new
distribution technologies and requests that the Subcommittee
ensure that these technologies are available to all public
radio services and not just the ones with the greatest
resources.
Community Radio fully supports $430 million in federal funding for
the Corporation for Public Broadcasting in fiscal year 2008.--Federal
support distributed through CPB is an essential resource for rural
stations and for those stations serving minority communities. These
stations provide critical, life-saving information to their listeners
and are often in communities with very small populations and limited
economic bases, thus the community is unable to financially support the
station without federal funds.
In larger towns and cities, sustaining grants from CPB enable
Community Radio stations to provide a reliable source of noncommercial
programming about the communities themselves. Local programming is an
increasingly rare commodity in a nation that is dominated by national
program services and concentrated ownership of the media.
For the past 29 years, CPB appropriations have been enacted 2 years
in advance. This insulation has allowed pubic broadcasting to grow into
a respected, independent, national resource that leverages its federal
support with significant local funds. Knowing what funding will be
available in advance has allowed local stations to plan for programming
and community service and to explore additional non-governmental
support to augment the federal funds. Most importantly, the insulation
that advance funding provides ``go[es] a long way toward eliminating
both the risk of and the appearance of undue interference with and
control of public broadcasting.'' (House Report 94-245.)
For the last few years, CPB has increased support to rural stations
and committed resources to help public radio take advantage of new
technologies such as the Internet, satellite radio and digital
broadcasting. We commend these activities which we feel provide better
service to the American people but want to be sure that the smaller
stations with more limited resources are not left out of this
technological transition. We ask that the Subcommittee include language
in the appropriation that will ensure that funds are available to help
the entire public radio system utilize the new technologies,
particularly rural and minority stations.
NFCB commends CPB for the leadership it has shown in supporting and
fostering the programming services to Latino stations and to Native
American stations. For example, Satelite Radio Bilingue provides 24
hours of programming to stations across the United States and Puerto
Rico addressing issues in Spanish of particular interest to the Latino
population. At the same time, American Indian Radio on Satellite
(AIROS) is distributing programming for the Native American stations,
arguably the fastest growing group of stations. There are now over 30
stations controlled by and serving Native Americans, primarily on
Indian reservations.
This year CPB funded the establishment of the Center for Native
American Public Radio (CNAPR). Based on a comprehensive assessment of
the Native American Radio System, CNAPR will develop new funding
sources for stations and programming; provide direct services to the
Native Radio System; encourage collaborations; and represent the Native
Radio System. These stations are critical in serving local isolated
communities (all but one are on Indian Reservations) and in preserving
cultures that are in danger of being lost. CPB's assessment recognized
that ``. . . Native Radio faces enormous challenges and operates in
very difficult environments.'' CPB funding is critical to these rural,
minority stations. CPB's funding of the Intertribal Native Radio Summit
in 2001 helped to pull these isolated stations together into a system
of stations that can support each other. The CPB assessment goes on to
say ``Nevertheless, the Native Radio system is relatively new, fragile
and still needs help building its capacity at this time in its
development.'' The Center for Native American Public Radio promises to
leverage additional, new funding to ensure that these stations can
continue to provide essential services to their communities.
CPB also funded a Summit for Latino Public Radio which took place
in September 2002 in Rohnert Park, California, home of the first Latino
Public Radio station. These Summits have expanded the circle of support
for Native and Latino Public Radio and identified projects that will
improve efficiency among the stations through collaborations and
explore new ways of reaching the target audiences.
CPB plays a very important role for the public and Community Radio
system. They are the convener of discussions on critical issues facing
us as a system. They support research so that we have a better
understanding of how we are serving listeners. And they provide funding
to programming, new ventures, expansion to new listeners, and projects
that improve the efficiency of the system. This is particularly
important at a time when there are so many changes in the radio and
media environment with new distribution technologies and media
consolidation. An example of this support is the grant that NFCB
received to update and publish our Public Radio Legal Handbook online.
This provides easy-to-read information to stations about complying with
governmental regulations so that stations can function legally and use
their precious resources for programming instead of legal fees.
Finally, Community Radio supports $45 million in fiscal year 2006
for conversion to digital broadcasting by public radio and
television.--It is critical that this digital funding be in addition to
the on-going operational support that CPB provides. The President's
proposal that digital money should be taken from the fiscal year 2006
CPB appropriation would effectively cut stations' grants by more than
25 percent. This would have a devastating impact as stations trying to
recover from hard economic times. And it would come at a time when the
local voices of community and public radio are especially important to
notify and support people during emergency situations and to help
communities deal with the loss of loved ones--things that commercial
radio is no longer able to do because of media consolidation.
While public television's digital conversion needs are mandated by
the FCC, public radio is converting to digital to provide more public
service and to keep up with what commercial radio is doing. The Federal
Communications Commission has approved a standard for digital radio
transmission. CPB has provided funding for 301 transmitters in 42
states to convert to digital, is supporting additional research on AM
radio conversion, and is working with radio transmitter and receiver
manufacturers to build in the capacity to provide a second channel of
programming. Most exciting to public and community radio is the
encouraging results of tests that National Public Radio has conducted,
with funding from CPB, that indicate that stations can broadcast two
high-quality signals, even while they continue to provide the analog
signal. The development of second audio channels will potentially
double the public service that public radio can provide, particularly
in service to unserved and underserved communities. This initial
funding still leaves more than 500 radio transmitters that will
ultimately need to convert to digital or be left behind.
Federal funds distributed by the CPB should be available to all
public radio stations eligible for Federal equipment support through
the Public Telecommunications Facilities Program (PTFP) of the National
Telecommunications and Information Agency of the Department of
Commerce. In previous years, Federal support for public radio has been
distributed through the PTFP grant program. The PTFP criteria for
funding are exacting, but allow for wider participation among public
stations. Stations eligible for PTFP funding and not for CPB funding
include small-budget, rural and minority controlled stations and the
new Low Power FM service.
Community Radio also supports funding for the public television
interconnection system. Interconnection is vital to the delivery of the
high quality programming that public broadcasting provides to the
American people.
We appreciate Congress' direction to CPB that it utilize its
digital conversion fund for both radio and television and ask that you
ensure that the funds are used for both media. Congress stated, with
regard to fiscal year 2000 digital conversion funds:
``The required (digital) conversion will impose enormous costs on
both individual stations and the public broadcasting system as a whole.
Because television and radio infrastructures are closely linked, the
conversion of television to digital will create immediate costs not
only for television, but also for public radio stations (emphasis
added). Therefore, the Committee has included $15,000,000 to assist
radio stations and television stations in the conversion to
digitalization . . . .'' (S. Rpt. 105-300)
This is a period of tremendous change. Digital is transforming the
way we do things; new distribution avenues like digital satellite
broadcasting and the Internet are changing how we define the business
we are in; the concentration of ownership in commercial radio makes
public radio in general, and Community Radio in particular, more
important as a local voice than we have ever been. New Low Power FM
stations are providing new local voices in their communities. Community
radio is providing essential local emergency information, programming
about the local impact of the major global events taking place,
culturally appropriate information and entertainment in the language of
the native culture, as well as helping to preserve cultures that are
dying out.
During this time, the role of CPB as a convener of the system
becomes even more important. The funding that it provides will allow
the smaller stations to participate along with the larger stations
which have more resources, as we move into a new era of communications.
Thank you for your consideration of our testimony. If the
Subcommittee has any questions or needs to follow-up on any of the
points expressed above, please contact: Carol Pierson, President and
CEO, National Federation of Community Broadcasters, Telephone: 510 451-
8200 Fax: 510-451-8208 E-mail: [email protected]
The NFCB is a 30-year-old grassroots organization which was
established by, and continues to be supported by, our member stations.
Large and small, rural and urban, the NFCB member stations are
distinguished by their commitment to local programming, community
participation and support. NFCB's 257 members come from across the
United States, from Alaska to Florida, from every major market to the
smallest Native American reservation. While the urban member stations
provide alternative programming to communities that include New York,
Minneapolis, San Francisco and other major markets, the rural members
are often the sole source of local and national daily news and
information in their communities. NFCB's membership reflects the true
diversity of the American population: 41 percent of the members serve
rural communities and 46 percent are minority radio services.
On Community Radio stations' airwaves examples of localism abound:
on KWSO in Warm Springs, Oregon, you will hear morning drive programs
in their Native language; throughout the California farming areas in
the central valley, Radio Bilingue programs five stations targeting
low-income farm workers; in Chevak, Alaska, on KCUK you will hear the
local weather reports and public service announcements in Cup'ik/Yup'ik
Eskimo; in Dunmore, West Virginia, you will hear coverage of the local
school board and county commission meetings; KABR in Alamo, New Mexico
serves its small isolated Native American population with programming
almost exclusively in Navajo; and on WWOZ you can hear the sounds and
culture of New Orleans throughout the day and night.
In 1949 the first Community Radio station went on the air. From
that day forward, Community Radio stations have been reliant on their
local community for support. Today, many stations are partially funded
through the Corporation for Public Broadcasting grant programs. CPB
funds represent under10 percent of the larger stations' budgets, but
can represent up to 50 percent of the budget of the smallest rural
stations.
______
Prepared Statement of the National Minority Public Broadcasting
Consortia
--National Asian American Telecommunications Association
--National Black Programming Consortium
--Latino Public Broadcasting Project
--Native American Public Telecommunications
--Pacific Islanders in Communications
The National Minority Public Broadcasting Consortia (Minority
Consortia) submits this statement on the fiscal year 2008 appropriation
for the Corporation for Public Broadcasting (CPB) and CPB's fiscal year
2006 digital conversion funding. Our primary missions are to bring a
significant amount of programming from our communities into the
mainstream of PBS and public broadcasting. In summary, we ask the
Committee to:
--Encourage CPB to increase its efforts for diverse programming with
commensurate increases for minority programming and the
Minority Consortia;
--Encourage CPB to continue its support for the Native radio system;
--Reject the Administration's proposal to end advance funding for the
Corporation for Public Broadcasting;
--Reject the Administration's proposal to divert $82 million of
already-appropriated fiscal year 2006 funds to digital
conversion and satellite interconnection and to rescind an
additional $10 million;
--Recommend at least $430 million for CPB core funding for fiscal
year 2008, a $30 million increase over fiscal year 2007;
--Support CPB's request of $45 million in fiscal year 2006 funds for
digital conversion, but require that some of it be made
available to independent producers. Also support CPB request of
$52 million for the interconnection system for public radio and
television.
We are dismayed at the Administration's continued proposals
regarding public broadcasting. The quality gap between network
television and public television has never been wider, and it continues
to grow with each new ``reality'' show. Administration proposals to end
forward funding of CPB and to divert already appropriated funds would
dramatically reduce the development of programming for public
broadcasting.
Advance Funding.--We strongly oppose the Administration's proposal
that the advance funding for CPB be eliminated, a proposal that would
stop CPB funding for two years. We appreciate that Congress has
rejected this proposal each of the last four years. Reasons to continue
advance funding for CPB include:
--The production of programming for public broadcasting usually takes
several years and substantial lead time is needed for planning.
--Public broadcasting programs are supported by multiple funding
sources, and two years advance knowledge of the amount of
federal funding allows CPB to better leverage its federal funds
to bring in other sources of revenue.
--The Minority Consortia administers a significant amount of CPB
programming monies, and elimination of advance funding would
negatively affect our organizations' planning and fundraising
activities.
Proposed Diversion of Fiscal Year 2006 CPB Funds.--We are extremely
concerned about the Administration's proposal to rescind $10 million
and divert an additional $82 million of already appropriated fiscal
year 2006 CPB funds to digital conversion and satellite
interconnection. Such a rescission/diversion of funds would wreck havoc
on our organizations and the independent producers that we help support
as well as many radio and television stations. We would be faced with a
25 percent reduction of CPB funds should Congress approve this proposal
by the Administration.
CPB Fiscal Year 2008 Appropriation.--We support a fiscal year 2008
federal appropriation for CPB of at least $430 million. This would be a
reasonable, albeit modest, contribution toward our national treasure of
public broadcasting. The debate of the past several years regarding
public television and public radio has highlighted the great esteem in
which they are held.
Public broadcasting, including PBS and NPR, is particularly
important for our nation's growing minority and ethnic communities.
While there is a niche in the commercial broadcast and cable world for
quality programming about our communities and our concerns, it is in
the public broadcasting industry where minority communities and
producers are more able to bring quality programming for national
audiences. Additionally, public television and radio is universally
available.
Digital Conversion Assistance.--We support CPB's request for $45
million in fiscal year 2006 funds for digital conversion funding for
CPB.
With stations able to broadcast on multiple channels, there will be
a need for a tremendous amount of new, quality public broadcasting
programming. There are costs involved in the conversion which go beyond
the significant equipment and hardware needs of stations. It will also
take additional money to produce programming for digital broadcast. All
producers face these new, higher costs.
Part of the equation in bringing more high quality diverse
programming to public broadcasting is that independent producers be
able to transition to digital production. Federal funding for digital
conversion should include assistance for independent producers.
About the National Minority Public Broadcasting Consortia.--With
primary funding from the Corporation for Public Broadcasting, the
Minority Consortia serves as an important component of American public
television. By training and mentoring the next generation of minority
producers and program managers we are able to ensure the future
strength of public television and radio television programming from our
communities. Individually, each Consortia organization is engaged in
cultivating ongoing relationships with the independent producer
community by providing technical assistance, program funding,
programming support and distribution. We also provide numerous hours of
programming to individual public television and radio stations.
Through our outreach we help bring an awareness of the value of
public media among communities which have historically been untapped by
public television. Through innovative outreach campaigns, local
screenings of works destined for public television, and promotion of
web-based information and programming, communities of color are
embraced rather than ignored. The Minority Consortia's work in
educational distribution further increases the value of public
television programming by sharing its works with thousands of students.
While the Consortia organizations work on projects specific to
their communities, the five organizations also work collaboratively.
One example is our joint effort on the public television four-part
series, Matters of Race that aired in the Fall of 2003. That series
explored the complexity of our rapidly changing multiracial,
multicultural society in America. The project resulted in more than
television programming. The project was designed so that modules could
be pulled out for classroom use. It was also formatted for radio
broadcast and for the internet, and included extended interviews. This
project provided a great opportunity for extensive and diverse
community outreach and collaboration throughout its development,
distribution, and use.
We also worked with American Public Television on 6 one-hour
programs (named Colorvision) featuring the work of Native American,
Asian American, Pacific Islander, Latino and African American
filmmakers and television producers. It is now in national distribution
for all public television stations.
The programming we, both as individual organizations and
collaboratively, help bring to public television is beyond the
production reach of most local television stations. We support the
bill's proposal for increased funding for the production of local
programming but believe there is also a great need for increased
funding for major programming efforts such as those we and other
independent producers undertake.
From 1997 to 2002, the Minority Consortia delivered over 88.5 hours
of quality public television programming. Collectively, we have also
funded 250 projects and 440 producers/directors. These accomplishments
have been recognized with over 123 prestigious national and regional
awards, including numerous Emmys. While most of our work is focused on
film, of note is that the Native American Public Telecommunications
(NAPT) also works in the area of public radio. NAPT developed the
Native American public radio satellite network (AIROS) that provides
live radio streaming 24 hours a day to over 70 Native American and
mainstream public radio stations in the United States (including
Alaska).
CPB Funds for the Minority Consortia.--The National Minority Public
Broadcasting Consortia currently receives funds from two portions of
the CPB budget, organization support funds from the Systems Support and
programming funds from the Television Programming sections. CPB
financial support is critical to the work of our organizations. We
believe that we make a major contribution to public broadcasting with a
very modest amount of funding, but there is so much more that should be
done.
The organizational support funds we receive from CPB are used not
only for operations requirements but for also for a broad array of
programming support activities and for outreach to our communities. We
received $2 million in fiscal year 2005 CPB funds for organizational
support ($400,000 for each organization). This represents 0.51 percent
of the fiscal year 2005 CPB appropriation. We have received only very
small increases in operations support funds in the past several years.
The programming funds we receive from CPB are re-granted to
producers, used for purchase of broadcast rights and other related
programming activities. Each organization solicits applications from
our communities for these programming funds. We received $3.1 million
in fiscal year 2005 CPB funds for programming ($636,363 for each
organization). This represents 0.81 percent of the fiscal year 2004 CPB
appropriation. Our CPB programming funds have remained virtually flat
over the past nine years, despite increases in CPB appropriations.
The Minority Consortia works closely with CPB. We value our
relationship with CPB and appreciate the financial and technical
assistance provided to us by that organization. We do not doubt CPB's
commitment to increasing the diversity of programming on public
television and radio but also believe they can do more with the
resources at hand. The oft-stated commitment of CPB and Congress for
increased multicultural programming combined with seven years of
funding increases should translate into significant progress. We ask
this Committee to urge CPB to increase its support for the Minority
Consortia as part of an effort to bring more quality multicultural
programming to public television.
Native Radio.--Native American Public Telecommunications--one of
the five Minority Consortia organizations--works with both the radio
and television sides of public broadcasting. NAPT operates American
Indian Radio on Satellite (AIROS) which distributes programming to
Native-owned and other radio stations. Koahnic Broadcasting
Corporation, headquartered in Alaska, also produces and distributes
Native American programming.
Native-owned radio is the fastest growing area of community radio.
There are currently 33 Native-owned stations, all but one of which is
located in Indian country. We greatly appreciate CPB's central role in
the establishment late last year of the Center for Native American
Public Radio (CNAPR), an organization that will provide technical and
other services to Native radio stations. CNAPR's mission also includes
developing new sources of revenue for the Indian radio system and being
an advocate for Native radio. CPB is providing $1.5 million over a
three-year period for CNAPR.
We ask that this Committee urge CPB to continue its support for
Native radio.
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 thank you
for your long time support of our work on behalf of our communities.