[Senate Hearing 114-683]
[From the U.S. Government Publishing Office]
S. Hrg. 114-683
ALZHEIMER'S DISEASE: THE STRUGGLE FOR FAMILIES, A LOOMING CRISIS FOR
MEDICARE
=======================================================================
HEARING
before the
SUBCOMMITTEE ON HEALTH CARE
of the
COMMITTEE ON FINANCE
UNITED STATES SENATE
ONE HUNDRED FOURTEENTH CONGRESS
SECOND SESSION
__________
JULY 13, 2016
__________
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
Printed for the use of the Committee on Finance
_________
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COMMITTEE ON FINANCE
ORRIN G. HATCH, Utah, Chairman
CHUCK GRASSLEY, Iowa RON WYDEN, Oregon
MIKE CRAPO, Idaho CHARLES E. SCHUMER, New York
PAT ROBERTS, Kansas DEBBIE STABENOW, Michigan
MICHAEL B. ENZI, Wyoming MARIA CANTWELL, Washington
JOHN CORNYN, Texas BILL NELSON, Florida
JOHN THUNE, South Dakota ROBERT MENENDEZ, New Jersey
RICHARD BURR, North Carolina THOMAS R. CARPER, Delaware
JOHNNY ISAKSON, Georgia BENJAMIN L. CARDIN, Maryland
ROB PORTMAN, Ohio SHERROD BROWN, Ohio
PATRICK J. TOOMEY, Pennsylvania MICHAEL F. BENNET, Colorado
DANIEL COATS, Indiana ROBERT P. CASEY, Jr., Pennsylvania
DEAN HELLER, Nevada MARK R. WARNER, Virginia
TIM SCOTT, South Carolina
Chris Campbell, Staff Director
Joshua Sheinkman, Democratic Staff Director
______
Subcommittee on Health Care
PATRICK J. TOOMEY, Pennsylvania, Chairman
CHUCK GRASSLEY, Iowa DEBBIE STABENOW, Michigan
PAT ROBERTS, Kansas MARIA CANTWELL, Washington
MICHAEL B. ENZI, Wyoming ROBERT MENENDEZ, New Jersey
RICHARD BURR, North Carolina BENJAMIN L. CARDIN, Maryland
DANIEL COATS, Indiana SHERROD BROWN, Ohio
DEAN HELLER, Nevada MARK R. WARNER, Virginia
TIM SCOTT, South Carolina
(ii)
C O N T E N T S
----------
OPENING STATEMENTS
Page
Toomey, Hon. Patrick J., a U.S. Senator from Pennsylvania,
chairman,
Subcommittee on Health Care, Committee on Finance.............. 1
Stabenow, Hon. Debbie, a U.S. Senator from Michigan.............. 3
WITNESSES
Petersen, Ronald C., Ph.D., M.D., chair, Advisory Council on
Research, Care, and Services, National Alzheimer's Project Act,
Rochester, MN.................................................. 5
Paulson, Henry L., M.D., Ph.D., director, Michigan Alzheimer's
Disease
Center, University of Michigan, Ann Arbor, MI.................. 7
Karasow, Connie B., caregiver, Levittown, PA..................... 9
ALPHABETICAL LISTING AND APPENDIX MATERIAL
Karasow, Connie B.:
Testimony.................................................... 9
Prepared statement........................................... 25
Paulson, Henry L.:
Testimony.................................................... 7
Prepared statement........................................... 27
Petersen, Ronald C.:
Testimony.................................................... 5
Prepared statement with attachments.......................... 29
Stabenow, Hon. Debbie:
Opening statement............................................ 3
Toomey, Hon. Patrick J.:
Opening statement............................................ 1
Prepared statement of George Vradenburg, chairman and
founder, UsAgainstAlzheimer's, Chevy Chase, MD............. 34
Communications
Aging Institute.................................................. 37
Ellenbogen, Michael.............................................. 39
Jewish Association on Aging...................................... 40
Eli Lilly and Company............................................ 42
National Association of Psychiatric Health Systems (NAPHS)....... 43
National PACE Association........................................ 45
Shih, Regina A................................................... 48
University of Pittsburgh Alzheimer Disease Research Center (ADRC) 53
WomenAgainstAlzheimer's Network.................................. 56
(iii)
ALZHEIMER'S DISEASE:
THE STRUGGLE FOR FAMILIES,
A LOOMING CRISIS FOR MEDICARE
----------
WEDNESDAY, JULY 13, 2016
U.S. Senate,
Subcommittee on Health Care,
Committee on Finance,
Washington, DC.
The hearing was convened, pursuant to notice, at 2:47 p.m.,
in room SD-215, Dirksen Senate Office Building, Hon. Patrick J.
Toomey (chairman of the subcommittee) presiding.
Present: Senators Grassley, Burr, Heller, Stabenow,
Menendez, and Carper.
Also present: Republican Staff: Brad Grantz, Staff
Director, Subcommittee on Health Care. Democratic Staff: Kim
Corbin, Minority Staff Director, Subcommittee on Health Care.
OPENING STATEMENT OF HON. PATRICK J. TOOMEY, A U.S. SENATOR
FROM PENNSYLVANIA, CHAIRMAN, SUBCOMMITTEE ON HEALTH CARE,
COMMITTEE ON FINANCE
Senator Toomey. The Subcommittee on Health Care hearing
will come to order.
Alzheimer's is in a category of its own in terms of its
breadth, its lethality, the severity of this disease. We
estimate that there are 5.2 million Americans with Alzheimer's.
It is 100-percent fatal. It is the sixth leading cause of
death, and the number of fatalities is likely to be
underreported.
There is no cure. There is not even a treatment. The cause
is still unknown. The toll on the lives lost, of course, is
devastating, but the financial and emotional toll on caregivers
is devastating as well, and there is a huge financial burden
that the public pays.
The research by the Alzheimer's Association concluded that
Alzheimer's disease is the costliest chronic condition in
America, more expensive than any other disease. Medicare and
Medicaid together will spend over $160 billion a year, and
while approximately 10 percent of Medicare beneficiaries have
Alzheimer's, they consume about 20 percent of all Medicare
dollars. This is a significant cost to Medicaid as well, as
Medicaid provides long-term institutional care, and about half
of nursing home residents have some form of dementia, many of
them, of course, from Alzheimer's.
For many of us, this issue is very personal. My father was
diagnosed 4 years ago. I had a grandmother who died of the
disease. I can say firsthand how devastating it is to families.
I have been pleased to be able to work with a great
bipartisan group of Senators and House members on advancing a
Federal response to this. I am the co-chair of the bipartisan
Congressional Task Force on Alzheimer's Disease, with Senators
Markey, Collins, and Warner, and I have convened this hearing
to explore further ways to strengthen Medicare and Medicaid,
especially to support caregivers.
There are four big topics that I hope we will be able to
pursue in some detail today. First is the fact that a lack of
diagnosis hurts families. There is a report by the Alzheimer's
Association that suggests that only about 45 percent of people
with Alzheimer's disease or their caregivers are told their
diagnosis by their doctor.
We need to ensure that physicians are aware of the value in
communicating a diagnosis to the families. There are incredible
advances in medical imaging technology that now allow a
definitive diagnosis to be made prior to death. In 2013,
Senator Hatch led several members of this committee, including
myself, in writing to CMS in support of a national study on
using PET imaging to diagnosis Alzheimer's. CMS agreed, and we
will hear today how that technology has helped families with
loved ones who have Alzheimer's disease.
The second point that I want to address today is the
importance of caregivers being fully engaged in the treatment
plan. Caregivers face tremendous stress, and a care planning
session can help connect the caregiver and the patient with
resources and support. CMS has proposed a new billing code for
2017 for a care planning session, similar to the approach that
Senator Stabenow's HOPE for Alzheimer's Act takes. I am pleased
to announce today I will be a cosponsor of your legislation.
The third point is the huge long-term care costs for
families. There are few viable long-term care options for many
middle-class families, and it places a huge strain on
caregivers, as well as on family finances. Many families end up
spending down their assets and eventually qualify for Medicaid.
In 2010, Congress reduced the value of the medical expense
deduction, that is, the threshold above which medical expenses
can be deducted. It was moved from 7.5 percent of income to 10
percent of income. I am grateful to Senator Coats for working
with me to restore that deductibility at the lower level. The
IRS determined that 86 percent of taxpayers claiming this
deduction for extraordinary medical expenses earn less than
$100,000. This is an important deduction for them. I also hope
we will get a chance to talk about long-term care insurance. It
can be enormously helpful, but very few people really have
long-term care insurance.
Finally, and maybe most importantly, we need a cure. One
hundred and ninety Alzheimer's drugs have been tried, and they
have failed in human trials. Companies have invested billions
of dollars in searching for an effective treatment. About $3
billion a year is spent, but none of that money changes the
course of this disease. With the number of Alzheimer's patients
projected to grow from over 5 million to nearly 14 million
people in the foreseeable future, an effective therapy could
yield enormous savings--most importantly, the immeasurable
benefit of saving so many lives, but in addition, it could have
huge financial benefit for those families that would otherwise
be afflicted, and for Medicare and Medicaid.
There are other Federal issues outside the Finance
Committee's jurisdiction that I think need to be addressed. One
is the NIH allocation. I have sat down and met with NIH
Director Francis Collins. The NIH budget is about $32 billion a
year. Alzheimer's research receives less than 3 percent of the
funding. The fact is, there are other non-fatal and treatable
diseases that receive far more resources in their research. I
think we need to increase our Alzheimer's research, and we need
to do it in a fiscally responsible way.
But I want to thank everyone for joining us today,
including, especially, the Alzheimer's Association from the
Delaware Valley chapter of southeastern Pennsylvania. I know
you are very well represented here today. I appreciate that.
Now, let me recognize our ranking member, Senator Stabenow.
OPENING STATEMENT OF HON. DEBBIE STABENOW,
A U.S. SENATOR FROM MICHIGAN
Senator Stabenow. Thank you very much, Mr. Chairman. It is
my pleasure to join with you in this hearing which is so
important and, as we know, impacts so many people. I want to
thank the three witnesses whom we have testifying before the
subcommittee today, including Dr. Paulson from Michigan. We are
glad to have you with us. Improving care for people with
Alzheimer's is critically important to all of us, and it
touches all of us in some way. So I am really looking forward
to this hearing.
We do know the statistics. There are a lot of statistics
that we could look at. But let me just mention a couple. The
sixth leading cause of death in the United States is
Alzheimer's disease. More than 5 million people are living with
this disease in our country. Important for us on the Finance
Committee is that 1 out of 5 Medicare dollars, all of Medicare,
1 out of 5 Medicare dollars goes to caring for those with
Alzheimer's and related dementias. By 2050, it is estimated
that 1 in 3 Medicare dollars will go toward Alzheimer's
patients.
Alzheimer's is particularly devastating for women and for
people of color. Women are two times more likely to face an
Alzheimer's diagnosis than men. African-Americans are twice as
likely to have Alzheimer's, and Hispanics are 1.5 times more
likely.
We also know how critically important research is, because
there is no known cure, and no cure for Alzheimer's disease
means we have a lot of work to do on research. Right now, we
have 1 in 3 seniors who are dying as a result of this disease.
With this bleak outlook, it is no wonder that doctors delay
diagnosis and begin some treatment without fully discussing the
Alzheimer's diagnosis with individuals and families.
All of this is taking its toll on caregivers, the men and
women, young and old, who love and care for a person with this
awful disease. Nearly 16 million family members and friends
care for those with Alzheimer's or a related dementia. These
caregivers do this work out of love, but also at a significant
financial and emotional cost to themselves.
In short, we need to do more. If we care about people with
Alzheimer's disease and their loved ones, we need to do more.
If we care about making sure Medicare is financially
sustainable in the future, we need to do more.
There is good news. Since 2010, Senator Collins and I have
sponsored a bill called the HOPE for Alzheimer's Act, which
would empower those with Alzheimer's and their caregivers to
take control of this diagnosis. With this bill, Medicare would
reimburse for a comprehensive care planning service so that a
person with Alzheimer's and their family can learn about the
disease, gain access to much-needed support services in the
community, learn about treatment and clinical trial options,
and generally be better armed to face the diagnosis.
Six years later, we now have 57--with Senator Toomey, 58--
cosponsors. I want to thank Senator Menendez, a long-time
cosponsor of this legislation, for his advocacy. Not only has
the Finance Committee been discussing this in its chronic care
effort, the Appropriations Committee has included language to
create a HOPE-like benefit in the current Labor, Health, and
Human Services bill. So we are moving. And now the best news is
that CMS has proposed creating a new Alzheimer's care planning
code that could essentially implement the benefit that we have
been working on in the HOPE Act.
So with that, as well as the additional dollars going into
research, which is absolutely critical, we are seeing some
things happen. But there is still a long way to go.
I am also very pleased to be the lead Democrat on a bill
with Senator Capito, who has been very active with HOPE for
Alzheimer's. I appreciate her partnership and working with me
to place this language in the Appropriations bill. The new bill
is called the Alzheimer's Beneficiary and Caregiver Support
Act. This bill, which came together because of the advocacy of
UsAgainstAlzheimer's, would create a 3-year Medicare pilot
program to test the benefits, both financially and the health
outcome for Medicare beneficiaries, of providing support
services directly to caregivers of Alzheimer's patients.
So there is a lot happening. There needs to be a lot
happening. We need to redouble our efforts, both in supporting
families and caregivers and doing everything humanly possible
to create the right kind of medications and a cure.
So I am pleased to be here today. I am looking forward to
this hearing and what our witnesses have to say, Mr. Chairman.
Senator Toomey. Thank you, Senator Stabenow.
Senator Menendez, would you like to make an opening
statement?
Senator Menendez. Mr. Chairman, I will do it before my
questions so we can get to the witnesses.
Senator Toomey. Senator Burr, likewise? Very well.
Then I will begin with the introduction of the witnesses.
Senator Stabenow will introduce Dr. Paulson, but I will begin
with an introduction of Dr. Ronald Petersen, director of the
Mayo Clinic Alzheimer's Disease Research Center and the
chairman of the Federal Advisory Council on Alzheimer's
Research, Care, and Services.
Also joining us is Connie Bastek Karasow. Ms. Karasow is
the wife and caregiver of Mark Karasow, both of Levittown, PA.
She is also the executive director of a halfway house for 20
women recovering from chemical dependency.
Senator Stabenow, would you like to introduce Dr. Paulson?
Senator Stabenow. Thank you very much.
It is my great pleasure to introduce Dr. Henry L. Paulson,
who is director of the Michigan Alzheimer's Disease Center and
the Lucile Groff Professor of Neurology for Alzheimer's Disease
and Related Disorders at the University of Michigan. Dr.
Paulson received his medical and doctorate degrees from Yale
University. After completing his residency and fellowships, he
joined the University of Iowa in 1997 and joined the faculty at
the University of Michigan in 2007.
In addition to his own research, since 2011 Dr. Paulson has
served as the director of the Michigan Alzheimer's Disease
Center. As director, he coordinates efforts between three major
research universities in Michigan--the University of Michigan,
Wayne State University, and Michigan State University--in order
to better understand Alzheimer's disease. In addition to
Alzheimer's research, the center promotes education and
awareness about dementia and provides state-of-the-art clinical
care.
We so appreciate your being here.
Senator Toomey. I would like to formally introduce into the
record testimony from the Alzheimer's Association and also from
UsAgainstAlzheimer's chairman George Vradenburg. Thank you to
both groups in helping on this hearing.
[The statement appears in the appendix on p. 34.]
Senator Toomey. Dr. Petersen, you have 5 minutes for your
testimony.
STATEMENT OF RONALD C. PETERSEN, Ph.D., M.D., CHAIR, ADVISORY
COUNCIL ON RESEARCH, CARE, AND SERVICES, NATIONAL ALZHEIMER'S
PROJECT ACT, ROCHESTER, MN
Dr. Petersen. Thank you. Good afternoon, Chairman Toomey,
Ranking Member Stabenow, and distinguished members of the
Health Subcommittee.
My name is Ron Petersen, and as Senator Toomey indicated, I
chair the Advisory Council for the National Alzheimer's Project
Act. I am also a professor of neurology at Mayo Clinic and
direct the Alzheimer's Disease Research Center there. I sit on
the World Dementia Council as well.
Alzheimer's disease is the most devastating disorder of our
generation. It is estimated, as we have heard, that
approximately 5.1 million people in the United States currently
have the disease, and that is projected to rise to over 13
million by 2050. The Rand Corporation recently said that
Alzheimer's disease is, in fact, the most costly chronic
disease in this country, ranging around, from 2010 data, about
$200 billion a year at that point in time, as compared to heart
disease, which was $102 billion, and cancer $77 billion. So in
that comparison, staggering figures.
In 2011, President Obama signed the National Alzheimer's
Project Act into law, and this required the Secretary of Health
and Human Services to develop a national plan for addressing
Alzheimer's disease. The first plan was published in 2012 and
has been revised annually. There was also an advisory council
appointed as part of the law, and the advisory council's
charge, in addition to advising the Secretary, has been to
generate a list of recommendations each year that are sort of
unencumbered by fiscal restrictions and make recommendations to
the Secretary and to Congress directly as to what it is going
to take to fight this disease.
The primary goal of the national plan is to develop an
effective treatment and perhaps prevention of the disease by
2025. One of the corresponding recommendations of the advisory
council has been that the Federal Government should be spending
at least $2 billion a year to combat this disease. Currently,
with the recent increase--thank you very much--in 2016 for
Alzheimer's disease of $350 million, we are now at $991
million. But that is still not quite halfway to the $2-billion
goal recommended by the advisory council.
According to a recent report by the Alzheimer's
Association, caring for persons, as of 2015, costs this country
$226 billion, two-thirds of which comes from Federal Government
and State government dollars. By 2050, we will be spending $1.1
trillion caring for individuals, unless something is done about
this disease. The cumulative costs of caring for individuals
between now and 2050 will approach $20 trillion--so this almost
becomes unsustainable--again, almost 70 percent of that coming
from Medicaid and Medicare. So these numbers need to be
addressed immediately, because this scenario is untenable for
the country.
So putting this in the context of the primary goal of the
national plan to effectively treat the disease by 2025, it has
been estimated that if we develop a disease-modifying therapy,
say, something that delays the onset of the disease by 5 years,
we will reduce the number of people projected to have the
disease in 5 years from 8.2 million down to 5.8 million. This
will result in a savings of $83 billion for that time frame.
Projecting that out to 2050, where we are anticipating to spend
$1.1 trillion, that will be reduced to $734 billion. So having
a therapy that delays the onset of the disease by 5 years will
have a tremendous impact on individuals, families, and on the
health-care budget.
The research community is poised to make the necessary
progress to make these treatment projections a reality with a
disease-modifying therapy. The academic field is working on the
notion of prevention of the disease, because, clearly, from a
public health perspective, that is what we need.
So with recent advances, largely funded by the National
Institutes of Health, such as the Alzheimer's Disease
Neuroimaging Initiative, our work at Mayo in the Mayo Clinic
Study of Aging, we are now able to identify individuals who
have the underlying biologic causes of the disease earlier in
life, even when they are asymptomatic.
The advantage of that is it affords us an opportunity then
to develop treatments that are designed to have impact on those
particular biologic characterizations. As we move toward
earlier identification, it becomes imperative to take into
account the impressions of not only the individual with the
disease, but their caregivers as well. Recently, the Patient-
Centered Outcome Research Institute, PCORI, has funded an
Alzheimer's effort designed to, again, assess the impact on
individuals with the disease and caregivers.
So in closing, I would like to thank Congress for their
proactive stance in funding research for Alzheimer's disease,
but we are only halfway there. The time is now to act and to
continue to increase the budget for NIH so that these therapies
can, in fact, be developed, keeping in mind that this is the
most costly disease with which we deal and small impacts on the
disease will have enormous impacts on the health-care economy.
I would also like to commend both my Federal and non-
Federal colleagues on the advisory council, individuals at the
National Institutes of Health, and individuals at the
Department of Health and Human Services, for working tirelessly
on the execution of the national plan and its revision.
I appreciate this opportunity, and would be happy to answer
any questions.
[The prepared statement of Dr. Petersen appears in the
appendix.]
Senator Toomey. Thank you, Dr. Petersen.
Dr. Paulson?
STATEMENT OF HENRY L. PAULSON, M.D., Ph.D., DIRECTOR, MICHIGAN
ALZHEIMER'S DISEASE CENTER, UNIVERSITY OF MICHIGAN, ANN ARBOR,
MI
Dr. Paulson. Good afternoon, Chairman Toomey, Ranking
Member Stabenow, and members of the committee.
I am here today to express my support for the HOPE for
Alzheimer's Act. I am a professor at the University of
Michigan, where I direct the Michigan Alzheimer's Disease
Center. I am honored to speak on behalf of my colleagues and
our patients and their families to express a united vision for
comprehensive care for those living with dementia. As director
of our center, I speak for countless colleagues who care for
those with dementia. Collectively, we recognize that the
comprehensive care planning services provided by the HOPE Act
will improve the lives of millions of American families
confronting dementia.
This health impact is principally what drives our support.
But by helping dementia patients and their families navigate
the difficult road ahead, the HOPE Act also will reduce Federal
health-care costs by nearly $700 million over the next decade.
It is no wonder this measure has garnered broad bipartisan
support, and I applaud my Senator, Debbie Stabenow, and her
colleagues for their vision in crafting and supporting this
act.
Each day, over 1,000 Americans receive a diagnosis of
dementia. Most often, the specific diagnosis is Alzheimer's,
but other common dementias include Lewy body disease,
frontotemporal dementia, and vascular dementia. As a doctor, I
have seen the deep fear and uncertainty that can accompany this
diagnosis. Busy, overworked health-care providers might only
offer a simple fact sheet about the disease.
Too often, the future brought on by this progressive
disease remains uncharted and frightening. And to someone
receiving the diagnosis, the questions come fast and furious.
What changes in my life do I need to make now? What kind of
medical care do I need and when? How do I connect with others
who understand? To someone caring for a loved one, these same
questions and others surface. How can I possibly cope with the
new demands and stresses I am facing? What can we do to stay
healthy and close as a family?
Sadly, too often patients and their families never get the
chance to consider these questions, because the diagnosis is
not provided to them. Astonishingly, two-thirds of seniors
diagnosed with Alzheimer's are unaware of their diagnosis. We
must do a better job of diagnosing dementia earlier in the
course. Why? Earlier knowledge about the disease improves long-
term outcomes for those with cognitive impairment.
The HOPE for Alzheimer's Act will ensure that patients'
families receive the diagnosis and receive answers to these
questions, allowing them to work with providers to optimize a
plan for their future health and security. I cannot think of
anything more pressing for our patients right now. Yes, many of
us in the world are working hard to develop better therapies
and ultimately a cure for Alzheimer's, and Senators Toomey and
Stabenow and Dr. Petersen eloquently made the point that we are
working toward that cure.
But we are not there yet. The HOPE Act makes a difference
now. A few years ago, at Michigan, we realized that newly
diagnosed patients and their families sometimes fail to receive
all the information they need in a timely manner. So we piloted
a new multidisciplinary program, a team approach to dementia
that gives patients and caregivers the opportunity to meet with
a neurologist, neuropsychologist, nurse practitioner, and
social worker for an appointment during which we discuss test
results, the diagnosis, and care planning.
This program has worked exceptionally well. Patients and
caregivers overwhelmingly support our comprehensive approach,
because they learn more about their disease sooner and have a
greater awareness of community support and services. And in the
process, we are continually reminded that each patient is
unique. Care planning must be customized, taking into account
the type of dementia, the stage of the disease, other chronic
medical problems, and family dynamics, among other factors.
Unfortunately, few people who receive their diagnosis do it
through a major research center like ours, where we can pilot a
multidisciplinary approach. That is why the HOPE Act is so
important. It will ensure comprehensive care planning for
dementia across the country at all types of medical facilities.
Most of us, when we think of treatment, we think of
medicines. But for dementia, the components that go into state-
of-the-art care extend far beyond medicines. For example,
recent studies show that exercise improves brain function.
Careful attention to chronic illnesses, such as depression or
diabetes, improves the lives of those encountering dementia.
And access to support groups for patients and caregivers can be
a lifesaver. Care planning through the HOPE Act will ensure
that these and other vital components are offered to our
patients.
I close on a personal note. When given the opportunity to
direct our Alzheimer's Center 5 years ago, I jumped at the
chance. Why? Partly because it is an exciting time. We are now
testing potential disease-modifying therapies. And partly
because there is so much we still do not know and we need to
figure out. But mostly, it is because this disease touches us
all. I ask everyone in this room now to think of someone you
know who has confronted dementia. I am thinking of a colleague,
a brilliant physician, loved by his patients, who retired this
year when he faced the earliest signs of Alzheimer's.
Like you, I want to make a difference in the lives of those
with dementia. Until we have cures for the dementias, we need
to provide patients and families with the means to cope and
reasons to hope for a better future. This is precisely what the
HOPE Act will do.
I thank you for this opportunity.
[The prepared statement of Dr. Paulson appears in the
appendix.]
Senator Toomey. Thank you, Dr. Paulson.
Ms. Karasow?
STATEMENT OF CONNIE B. KARASOW, CAREGIVER, LEVITTOWN, PA
Ms. Karasow. Mr. Chairman and members of the subcommittee,
thank you for this opportunity to address the issues associated
with being a care partner for individuals living with
Alzheimer's disease and other dementias. It is an honor to
represent the over 5 million Americans living with the disease
and more than 15 million care partners who love them.
Alzheimer's disease is not a respecter of role, rank, or
relationship.
Those afflicted with Alzheimer's disease are adept at
concealing their confusion, their embarrassment, frustrations,
and fears, often before their partners begin to realize that
there is a problem. That was certainly true in our case. The
cues were subtle at first, and I had a demanding career. It was
not until the notes were piling up, including cues written on
his hands, that I suggested we see someone, half-jokingly
saying, to eliminate the big ``A'' fear.
On November 11, 2010, after some seemingly simplistic
tests, we were told by Dr. Weisman that my Mark, a 70-year-old
proud man, devoted husband, and father, had Alzheimer's
disease, a progressive, fatal disease of the brain. Based on
these seemingly simplistic tests, we were told that Mark was on
the bunny slope: we could expect a gradual decline. No direct
diagnostic tests were available, and we were often told by
others that no one really knows until they are dead and you can
see it in the brain--painfully glib, but true at the time. Mark
was prescribed medication to try to extend his memory, and we
were sent on our way, stunned, reeling, and projecting
scenarios we could never really fully appreciate.
Following Dr. Weisman's diagnosis, Mark experienced
depression, anxiety, and obsessive-compulsive behaviors that
led me to look for a geriatric psychiatrist, not an easy
specialist to find. I found someone who was compassionate and
intelligent, but untrained in dementia. She prescribed
medication for Mark's symptoms, and at each session, she would
give Mark a pep talk by saying ``You are not typically
Alzheimer's,'' an oxymoron that reinforced our hope and our
denial.
If Mark was not typically Alzheimer's, what typically was
he? And was he receiving the right protocols? We were
recommended to another neurologist, who sent us to a clinical
neuropsychologist for further testing. Mark endured 6 grueling
hours of testing, including assessments that covered 12
functioning parts of the brain. Following this battery of
tests, Mark's driver's license was revoked, and Mark left the
session feeling traumatized, frustrated, and, not typically,
angry.
The results indicated subcortical features; dementia
appeared to be present, mild to moderate in severity. However,
the precise nature of Mark's dementia was unclear from the test
data alone. We went back to the referring neurologist, who,
with a dismissive wave of his hand, declared that he did not
agree with the diagnosis and that was all he could do. He never
once asked me to meet with him separately from my husband so I
could give him my input.
We went back to Dr. Weisman, who was clearly disturbed with
what Mark went through. Knowing Mark's scientific curiosity, he
suggested a clinical trial, the Imaging Dementia--Evidence for
Amyloid Scanning, or IDEAS, study. The IDEAS study will
determine the clinical usefulness on patient-oriented outcomes
of a brain PET scan that detects amyloid plaques, a core
feature of Alzheimer's disease. This study is particularly
helpful at determining a diagnosis for people like my Mark who
do not present with typical dementia or cognitive decline.
After our previous experience, it was so reassuring to know
that there are doctors who care enough to help us pursue a firm
diagnosis and understand how important it really is. When Mark
had the PET scan that confirmed his diagnosis, all the debate,
searching, and uncertainty were put to rest and the real work
of living with the disease began.
Mark is willing to engage in other trials and wants to
donate his body when he dies. It is his desire to establish
something good from the nightmare of watching the
disintegration of his mind and his life.
We joined an Alzheimer's Association support group, where
we shared survival knowledge and survival skills. Issues for
care partners have included our children's distrust based on
fear; how to get rid of guns; stealth banking; thermostat wars;
repetition, the date, family information, media, et cetera;
hunger strikes; isolation; support; grieving; and survivor
guilt. We had the opportunity to establish a durable power of
attorney, medical directives, will, financial planning, medical
equipment, shoes for his gait, bathing, diet, weight loss,
family, and friends engagement.
For me, coping means trying to stay present with him in his
space, as long as his mind allows me. The rate of stress and
depression has been described as unique to caregivers. Everyone
says it is hard, and that is the simple truth. The awareness
that self-care of my mind, body, and spirit is critical to
survival is growing faster than the resources that make that a
reality for me.
Adult day care 2 days a week for my husband and me is
expensive, and I know the costs will increase over time. My
husband thought he was preparing to leave his family some
financial security that will melt like the snow in spring.
However, I am also concerned for the homeless poor and working
poor who lack transportation and child care, let alone elder
care. Without knowledge, health care, and case management
resources, families living in the margins of our society cannot
hope to manage the daily demands of those afflicted with
Alzheimer's disease. Investment in Alzheimer's services can
prevent the terrible social and fiscal costs in social services
due to the dissolution of families.
Before Mark enrolled in the IDEAS study and was able to get
an accurate diagnosis, I was asked, ``What difference does a
precise diagnosis make?'' A fair question, since we know at
that moment there is no cure.
Trying to express this is not easy. I looked up the quote,
``Better the devil you know than the devil you don't.'' This is
said when you think it is wiser to deal with someone, something
familiar, although you do not like him, her, or it, than to
deal with someone or something you do not know and might be
worse. I believe there is power in naming. How can we cure
something if we cannot even give it a name?
On a practical level, an early and accurate diagnosis of
Alzheimer's disease affords the individual the opportunity,
dignity, and respect of participation and involvement in
financial and legal decisions with his or her family.
Legislation like the HOPE for Alzheimer's Act, which allows
individuals newly diagnosed with Alzheimer's or related
dementias to have a care planning session with a health-care
provider, would do just that. If HOPE had been around at the
time of Mark's diagnosis, I am sure we would have felt much
less alone in this fight.
Thank you again for the honor and the opportunity to
testify today. I hope that I have been able to address the
issues of caregivers and their loved ones with the respect and
recognition they deserve. More importantly, I hope my message
conveyed to you the exact nature of the problems through our
eyes and perhaps has given you some insights on how your
leadership can be instrumental in the current and future needs
of our families and our communities.
[The prepared statement of Ms. Karasow appears in the
appendix.]
Senator Toomey. Thank you, Ms. Karasow. And let me thank
you for having the courage to share your personal experience. I
know that must be a very difficult thing to do.
I would like to start the questions by directing one to Ms.
Karasow. In your testimony, you indicated that the PET scan
that Mark received detected the amyloid plaques, and that led
to the definitive diagnosis of Alzheimer's. Is it fair to say
that without that scan, your family would not have had the
ability to properly chart the course of treatment and plan
accordingly?
Ms. Karasow. I would say yes, because I wasted an awful lot
of time--I wasted 5 years after the original diagnosis then
very quickly got the pieces of what we needed to do in place,
as I testified.
Senator Toomey. Were there decisions that your family made
that might have been easier or that you might have decided
differently had you had the definitive, accurate diagnosis
immediately?
Ms. Karasow. One of the things that I would not have
thought of--I have a good friend, who is our solicitor and our
lawyer, and she recommended that we very quickly revise our
wills, update our wills, so Mark could have participation in
that on behalf of his family, and that was very much
appreciated.
Senator Toomey. Sure. Thank you.
Dr. Paulson, we all understand that we do not have a cure
for the disease and the pharmacological treatments that are
administered do not really fundamentally change the course of
the disease. But nevertheless, you mentioned that there are
important and effective treatments. Could you elaborate a
little bit on what can be done in the absence of a curative
treatment?
Dr. Paulson. Absolutely; I would be happy to do that. I did
mention a few things. I think we all know that exercise is good
for the heart, and it is increasingly clear that aerobic
exercise several times a week improves brain function in people
who are beyond the age of 65, whether they have cognitive
impairment or not. So it is one of the first things that I tell
anyone who comes into my clinic who has dementia.
Adequate sleep makes all the difference in the world. The
right kind of sleep can make a difference. We believe that
maybe we rid the toxic proteins in the dementias by sleeping
enough.
Being socially and mentally engaged in the world around
you, the absolute opposite of a couch potato, is a very good
thing to help brain function as we go forward.
Finally, diet probably makes a difference, although that is
not as clearly worked out.
I think we need to, as we wait, as we work hard for those
disease-modifying therapies--and I believe we will get there--
we need to emphasize to people who have dementia that there are
plenty of things that can be done proactively, non-medically,
to help.
Cognitive training is another thing that makes a
difference, as well. I am sure Dr. Petersen would have other
things he would add to that.
Senator Toomey. Thank you very much.
Dr. Petersen, I would like to just explore with you a
little bit some recent research into the underlying cause of
Alzheimer's. In May, in fact, researchers from Harvard
theorized, in an article that was published in the journal
Science Translational Medicine, that some kind of pathogen and,
specifically, maybe a virus, may be responsible for triggering
Alzheimer's disease, and, specifically, that it may pass
through the blood-brain barrier.
Here is a brief quote from a New York Times article on this
research. ``The brain's defense system rushes in to stop the
pathogen by making a sticky cage out of proteins, called beta
amyloid. The microbe, like a fly in a spider web, becomes
trapped in the cage and dies. What is left behind is the cage,
a plaque that is the hallmark of Alzheimer's.''
The idea that is elaborated on in the article is that the
plaque then sets off a formulation of the tau tangles, which
then kill the nerve cells, inflame the brain, and hasten the
death of more brain cells.
I guess my question is, could you comment on your opinion
as to whether there is a consensus and, if so, the nature of
the consensus about the initial first causes? Is it considered
plausible that there is some kind of pathogen that triggers the
plaques that we associate with Alzheimer's, or are there other
theories that you think are more widely accepted?
Dr. Petersen. It is a very intriguing hypothesis, and I
think those investigators at Harvard have been working on this
theory for quite a number of years, with some credible evidence
that there is a role for either a precise pathogen like a virus
or at least the role of the immunological system in the brain
to combat it, and then the secondary inflammation that may
arise and cause subsequent damage.
Unfortunately, it throws the whole picture of the role of
amyloid in the brain, amyloid being the key protein in the
brain, into question. What is its function? What does it do? We
still do not know what the normal role of amyloid is in the
brain.
So they are postulating that it may actually have a
protective effect, and these plaques that we see on the PET
scans that you mentioned actually may be sequestering some of
the pathogenic material away. So that raises the question, if
you have a drug then that goes after that plaque, removes the
plaque or destroys the plaque, is that good or bad? And I think
it throws a lot of things up in the air and makes us reevaluate
what we are doing. I think we still think that the amyloid
protein, and the tau protein that forms the tangles, are
critical elements; in fact, they are the defining
characteristics of the disease, as we heard, with regard to
pathologics.
But I think we need to learn more about the disease, and
clearly, as the NIH has expanded its research program, getting
at some of these basic underlying mechanisms remains a high
priority.
Senator Toomey. Thank you, Dr. Petersen.
Senator Stabenow?
Senator Stabenow. Thank you very much. Again, thank you to
all of you for your testimony.
First, Dr. Paulson, as one of Michigan's top scientists
working on Alzheimer's, you certainly know as much about the
disease as anyone, and I know the University of Michigan's
Alzheimer's Disease Center takes a multidisciplinary approach,
as you were talking about. But most people in Michigan and
certainly around the country who have Alzheimer's disease are
probably unable to visit such a specialized facility.
So when we look at the fact that, according to the
Alzheimer's Association, somewhere between 40 percent and 50
percent of people with Alzheimer's do not get early diagnosis
and we hear from physicians that they are not sure it makes a
difference diagnosing it, because they are not sure what they
would do, that was one of the reasons that we put together HOPE
for Alzheimer's, so that there would actually be a message to
physicians that it would be something you could do in terms of
care-giving sessions and working with families in developing a
plan and so on.
But it is concerning to me that I do not know of any other
top cause of death that is so severely undiagnosed as this. So
I am just wondering if you might talk a little bit more about
early and formal diagnosis of Alzheimer's and how important it
is.
I know in talking to researchers in Michigan, they all
indicate that the kinds of things they are working on, if they
are going to work, actual medications and so on, they involve
early diagnosis. So it seems like being able to get that is a
very important thing for a number of reasons, whether it is new
drugs, whether it is supporting families and caregiver plans,
or whatever.
But if you could talk a little bit more about that, early
formal diagnosis----
Dr. Paulson. Absolutely. It is a new era in Alzheimer's and
related dementias. I think if you go back 20 years, it may have
been fair to say there was nothing we could do. But at this
point, that is clearly not the case. Connie eloquently
described the difficulties of making a diagnosis and some of
the ways that we can actually achieve now an earlier diagnosis.
Let me comment about why Alzheimer's, unlike heart disease
or diabetes or depression, is less commonly a diagnosis that
the family and the patient learn about. I think there are
really two things driving it. One is that doctors are busy and
they are moving from patient to patient, and they do not want
to or have the time to sit down and discuss with a family and a
patient what this means. That would change, I think, with the
HOPE Act.
The second reason is, it is a difficult thing for a doctor
to say to someone, ``You have a disease that is progressive,
that currently we cannot stop, and that is fatal.'' As Senator
Toomey said, this is 100-percent fatal. It is hard to say that.
We need to change that sort of dynamic for doctors, and
most of the diagnoses are not given by a specialist like me or
Dr. Petersen; they are given by primary care doctors. So I
think it is absolutely vital that we educate more primary care
providers about how to achieve an earlier diagnosis and provide
that information.
In terms of the therapies, yes, symptomatic therapies are
modest, at best, right now, and the disease-modifying therapies
are not there now. But I really believe that a sit-down with
the family and with the patient--where you mention the
diagnosis and say, these are the things we have to be thinking
about, we have to plan for in the future; these are the things
that will be an issue in 4 or 5 years, let us discuss them now;
these are some things you can do to make your quality of life
better now--is as important as any medication, frankly.
Senator Stabenow. Thank you.
Ms. Karasow, thank you for coming and sharing your story.
There are so many people who share your story and need to have
your voice here today speaking for them. I wonder if you might
talk a little bit more about your husband's path with the
disease and your experience as a family and a little bit more
about what having an early, clear diagnosis would mean.
What could have happened differently for you?
Ms. Karasow. Thank you for the question. Good question.
What happened was, we were very fearful and we relied on
each other and we did not talk about it. We did not talk about
it to the children, because we did not have anything definitive
to tell them, and who wants to scare them, and everything that
that implies?
If we had known sooner, we probably would have gotten into
a family session and started planning as a family together.
This way, we are doing everything catch-up and going back and
doing things that perhaps we could have put in place sooner.
What it means is isolation. I have three sons--one is in
Alaska and two are local--and they say, ``Oh, sure, Mom, we
will come by and we will stay with Dad anytime you want.'' I
hate to impose. And in the Alzheimer's support group, it is
hard to ask for help. It is hard to accept help when you and
your husband are in a war against this big, ugly, 5,000-pound
gorilla. It would be very helpful to have the kind of model
that Dr. Paulson noted. And I understand there is another one
in Pennsylvania, in Lancaster.
If there was a one-stop shop where you could have family
sessions--here is the medication--if I had been able to compare
with my sisters and brothers in the Alzheimer's support group
where they have gone--and we have helped each other enormously,
and that is the wonderfulness of the support group--we would
have been down the road a piece.
Maybe we would have taken vacations together while Mark was
still able. He cannot walk. He is having neurological problems
now. He is having delusions. Leaving him for an hour in the
morning for a commitment is very difficult. It is very
isolating. And you cannot get your family to come 24/7.
So them understanding that and knowing what you are going
through and finding other ways to meet the needs and find a
balance within all of the craziness of the disease is very,
very useful.
Senator Stabenow. Thank you very much.
Thank you, Mr. Chairman.
Senator Toomey. Senator Menendez?
Senator Menendez. Thank you, Mr. Chairman and Senator
Stabenow, for holding this really important hearing today. I
have many issues in the Senate, but this is an issue that is
supremely personal to me, since my late mother suffered from
Alzheimer's for 18 long, difficult years, years when we watched
her drift further and further away.
She was a courageous woman, a woman who saw her country in
the midst of revolution and decided, against my father's wishes
at the time, to uproot her family and come to the United States
in search of freedom and a better life for her children, which,
at that time, meant my brother and sister, coming to a country
where she had no one waiting for her, did not know the
language, and had no real understanding of the risks she was
taking. Courageous woman.
So when it first happened, I, of course, hoped for the best
but, of course, expected the worst. And there were days at the
beginning when my mother seemed just fine, when the lost
moments became more pronounced, and when they began to last
longer.
Now, there were times I wondered if she would recognize me
the next time I walked into the room, and I wondered if all the
memories of my youth and her life were in there somewhere or
whether they were lost forever. For a while, it seemed she was
as she was before, but then, as you know, it gets worse. She
lost her cognitive powers, and then the time came when I
realized she was really no longer with us, and then,
mercifully, the long goodbye came to an end.
Now, the grand irony of it all is that often the toll
Alzheimer's takes on the family, on loved ones, and on
caregivers can be worse even than on the person suffering with
the disease.
I appreciate Ms. Karasow's personal testimony, and I
appreciate her willingness to share it with us. I think about
it in the case of my own sister. Her name is Caridad, which in
Spanish means ``charity.'' And she had an enormous amount of
charity to give. She was a legal secretary who, during the day,
worked as I paid for a home health-care aide because of our
cultural belief that you just do not put Mom in a nursing home,
and then would come back at the end of a long day--no
vacations, no time off--and the only time she had off is the
time that I could ultimately come and give to her.
And I think about the intergenerational challenges that we
have with this disease, trying to give mom the dignity she
deserves in the twilight of her life, taking care of the
education of our children, trying to get them through college,
and thinking about our own lives in the future, and I think of
how many families across this country face that
intergenerational challenge as a result of this disease.
So that is why I believe that we must ensure that, in
addition to proper diagnosis, treatments, and eventually a
cure, we support and give planning, supporting care to help
families prepare for life with Alzheimer's.
I think Congress needs to aggressively fund the research
for causes and cures, because if not, the long goodbye will be
even longer for the Nation in costs and in heartache. So that
is why I am a proud cosponsor of Senator Stabenow's HOPE for
Alzheimer's Act, because I think it expressly provides for
these planning services. And I am pleased to see that CMS has
recently announced new billing codes to allow physicians to
provide care planning to Medicare beneficiaries. I think that
is incredibly important.
But one of the statistics that was mentioned in testimony
today is that fully two-thirds of those with Alzheimer's
disease do not know it. To me, that is a tragedy and a failure
of our health-care system. Not only is it a failure to properly
treat people, but it causes an undue and unnecessary burden on
the health-care system, which is a good part of what this
committee focuses on--certainly the human part of this
particular disease, as with other diseases that we face, but
the costs to the Nation collectively.
Since we know that early diagnosis leads to better long-
term outcomes, which in turn lead to lower costs, it seems to
me that any investment that we make in providing physicians
with the time, with the resources, with the knowledge they need
to better care for those with Alzheimer's will ultimately pay
for itself many times over.
I want to follow up with one question I have for both Dr.
Paulson and Dr. Petersen. I heard part of your response to
Senator Stabenow, but from the perspective of a clinician, what
is the root cause of this under-diagnosis? Is it simply, as you
said, that doctors do not want to necessarily share a very
difficult diagnosis with patients? There are many diseases,
some of which are horrible, like certain forms of cancer, which
I assume doctors would not want to give that diagnosis for, but
nonetheless do, even though the results at the end of the day
may not be what that family hoped for.
Is it that there is not one definitive test for Alzheimer's
which can account for this major lack of timely diagnosis? Is
it simply because of a lack of time and resources--which, of
course, the HOPE Act and CMS's new benefit would help address--
or is it a larger misunderstanding and lack of knowledge about
the disease more generally beyond specialists like yourselves?
Dr. Petersen. It is an excellent question, Senator
Menendez.
Senator Menendez. I only ask excellent questions.
[Laughter.] I am just kidding. Just kidding.
Dr. Petersen. I wish I could give an excellent answer.
Senator Menendez. None of my colleagues would say I always
ask excellent questions, I can tell you that. [Laughter.]
Dr. Petersen. It is very important, and I think many of the
issues you mentioned are all playing a part. I think there is
the physician training part, how comfortable they are with
making the diagnosis, because it is not a simple blood test; it
is not a simple x-ray. It is a clinical judgment, but I think
with some of the new techniques we have now, we can be more
confident that, in fact, this person who meets the clinical
syndrome of, say, dementia now has Alzheimer's disease as the
underlying cause.
So I think we are getting there, and I think the IDEAS
study that Connie mentioned is going to help us to convince CMS
that, in fact, we should support the amyloid imaging component
of the diagnostic process. So I think that is part of it.
I think there still is some therapeutic nihilism: there is
nothing we can do about this disease, so why burden this
patient with this kind of knowledge? And as Dr. Paulson has
indicated, there are many things we can do about it.
But most of all, the patient and the family deserve to know
what is going on. It is going to impact their decision-making
process; it is going to impact what they do the rest of their
life. And it is important, I think, for the physician--and we
have been trying to bring this message home to physicians--that
these individuals are often aging and they rarely have just
Alzheimer's disease as a diagnosis. They may have diabetes,
they may have hypertension, they may have heart failure.
The management of these other medical problems is
complicated and compounded by the fact that they have
Alzheimer's disease. So a person managing his or her own blood
sugar--diabetes management becomes much more difficult when the
person is having memory and thinking problems.
So I think for all of those reasons, it is important that
we implore the physicians and the medical community out there
to really get up to speed on what this diagnosis takes, what it
means for the individuals, and what we can do about it.
Dr. Paulson. I will follow up. The excellent question was
followed by an excellent answer, and I will not reiterate what
Dr. Petersen said, but let me make a couple of comments.
One, about the difficulty of diagnosis, Connie mentioned a
doctor saying this is atypical; this is not typical. The
reality is that with Alzheimer's and actually the whole range
of dementias, it is a spectrum, and not everything is cookie-
cutter. It is not at all that way.
Alzheimer's itself can take on many different flavors. It
can involve the frontal lobe, it can involve the back of the
brain, it often involves the memory, but it can involve the
other areas as well. So there can be ways in which the diseases
can trick us as well.
So, yes, in addition to this particular point, I think the
fact that it is a complicated disease, the dynamic changes over
time, contributes also to the failure of early diagnosis.
I just want to say I commend you for your comments about
your mother. But the point you raised about your sister's
involvement: the emotional and physical toll that occurs on
families is huge, and that is a dynamic process too over time,
and you eloquently described that.
Senator Toomey. Thank you.
Senator Heller?
Senator Heller. Thank you, Mr. Chairman and Senator
Stabenow, for holding this particular hearing. I certainly
appreciate it.
I am grateful to our witnesses for being here today and for
your background and understanding and for the messages that you
are sending to us.
I believe that talking about degenerative neurological
diseases--Dr. Paulson, you talked about how it affects
everybody. Everybody has a story. Everybody in this room has a
story. I certainly do appreciate Senator Menendez's story about
his mother.
My mother-in-law happens to have late stages of
Parkinson's. Dr. Paulson, is that considered a degenerative
neurological disease?
Dr. Paulson. Yes, Senator Heller. Parkinson's disease is a
degenerative brain disease, and, in fact, there is an overlap
between Parkinson's disease and the dementias. In fact, over
half of individuals who have Parkinson's disease in the late
stages have dementia. So there is a Parkinson's disease
dementia.
And I specifically mentioned the condition called Lewy body
dementia or diffuse Lewy body disease, which is related to
Parkinson's disease, because the same kind of protein
abnormally accumulates. It is not the amyloid that Dr. Petersen
spoke about. It is a different protein, but it has
similarities, and in the same way that we are moving forward
with new technologies and new ideas about therapies for
Alzheimer's, we are doing the same for Parkinson's disease and,
by extension, Parkinson's disease dementia and Lewy body
disease.
Senator Heller. The reason that I raise that issue is that
she is in the late stages, and she was at a doctor's
appointment last week. I went in with her, with my father-in-
law, her husband, and the doctor asked, ``Who are you with?''
and she said, ``My friend.'' So you can imagine the impact that
that has on the family when she is at that stage and she does
not realize and recognize her own husband of 60-plus years.
So having mentioned that, I want to talk a little bit to
Dr. Petersen. You mentioned your organization, your work with
the National Alzheimer's Project Act in Minnesota. How have you
been able to expand this to telemedicine?
I come from the rural State of Nevada. We have the Lou Ruvo
Clinic that is now working with the Cleveland Clinic. In fact,
they had a fundraiser last week. They have raised over $250
million for this specific purpose of these brain diseases and
trying to find cures and help people who are moving down that
road.
But the problem is, it is in Las Vegas, and telemedicine
has become so important for a large State like Nevada that
has--two-thirds of it is very rural.
How do you get to these rural towns? How do you get to the
Elkos, the Winnemuccas, the Elys and try to make sure that
those who are diagnosed in these stages and find it so
difficult to travel are able to get the help and services that
they need?
Dr. Petersen. Thank you for that question, because I think
telemedicine is the wave of the future as to how to deal with a
disease as widely prevalent as Alzheimer's disease, where
everybody is not going to be able to make it to a specialty
clinic, not make it to the Lou Ruvo Brain Institute, but is
going to have to be seen by their primary care physician.
The telemedicine offers an opportunity for those physicians
then to communicate with some of the specialists, to also deal
with the problems of patients in their homes, and we have been
dealing with that in Minnesota. Wisconsin has a program. I was
recently in Texas; Texas is developing a program for
telemedicine, same principal, with large spaces to deal with.
So I think that developing systems where we can communicate
with the primary care physicians for specialist
recommendations, but also then with the patients and families
themselves in their home, will help a great deal at reducing
the anxiety, reducing the co-morbidity that goes with it, and
actually help the quality of life for individuals with the
disease.
Senator Heller. Dr. Petersen, thank you.
Ms. Karasow, thank you for your message to all of us. Like
I said, it does make a difference. We need to hear these
stories. My wife's family is going through similar
circumstances, as I just mentioned. So it hits home.
Did you have Medicare services initially when your husband
was diagnosed?
Ms. Karasow. We had private insurance, Blue Cross/Blue
Shield, and he had Medicare. He was on Social Security by the
time he was diagnosed. Yes.
Senator Heller. What services were available to you?
Ms. Karasow. We were referred to the Alzheimer's
Foundation. I am trying to think of where I found that out.
Through Dr. Weisman, and that was it.
Senator Heller. That was it. Okay. Thank you.
Mr. Chairman, thank you.
Senator Toomey. Thank you.
Senator Carper?
Senator Carper. Thank you. I thank you, Mr. Chairman.
Welcome. It is good to see all of you. Thank you for being
here and helping us with an issue that we struggle with as
families and as States in this Nation.
My staff and I met earlier this week with some folks from
the pharmaceutical industry. We probably spent, in a half-hour
visit, at least half that time talking about Alzheimer's
research, and several of the companies represented there are
involved in projects with compounds or biologics trying to find
the road to a cure. I was encouraged by the numbers of them
that have paired up, so that you have several companies that
are working in tandem with others--more sharing of information.
I do not know if any of you are up to date with what is
going on on that front, but when we were facing the crisis with
Ebola, one of the ways we really focused on Ebola was coming up
with a vaccine, coming up with some kind of medicines that
could prevent it, that would help people get better. We are
doing a similar kind of thing with Zika, the Zika virus.
Just give us an update, somebody, any of you, on what is
going on on that front with respect to Alzheimer's.
Dr. Petersen. Thank you for the opportunity to chat on
that, because that is a very important aspect of developing
treatments for this disease. Academic medicine can identify the
molecules, the targets, take it to a certain level. Small
biotechs can introduce certain techniques. But ultimately, it
is going to take major pharma to carry out these huge global
phase 3 trials, and that is really what it is going to take.
I think almost all of the major pharmaceutical companies
out there have a program in Alzheimer's disease and dementia
right now, because the need is so great. Of course, the market
is also great, but, in fact, I believe that they are actually
dedicated to trying to help with this particular disease.
So much of the attention right now is focused on these
proteins that we have identified and discussed a little bit
this afternoon: the amyloid protein that is the component of
the plaque, the tau protein that is the component of the
tangles. So immunological approaches actually--antibodies,
either active or passive, approaches to dealing with those two
proteins--are actively being pursued.
The interesting feature of those is that, if successful,
they afford an opportunity for prevention of the disease,
because many times, these proteins appear in the brain before a
person becomes symptomatic. That gives us a window of
opportunity to intervene to try to prevent the clinical
symptoms down the road.
There are several trials underway right now at various
early stages in the disease process aimed at real prevention.
But I must say, a major obstacle right now to the development
of therapeutics is in clinical trial recruitment; that is,
getting individuals to participate in these studies.
Senator Carper. Really?
Dr. Petersen. It is a major, major problem right now, and I
think it goes back to some of the issues we were discussing
about physician awareness, family awareness, and patient
awareness that clinical trials are available and are very
effective at trying to combat this disease.
Senator Carper. For my colleagues and I, that is actually
something that is especially interesting. We all work--we have
our own messaging operations, communication operations, some of
which are old-fashioned: radio, TV, print. A lot of it is not
old-fashioned. And the idea of using our collective resources
to reach out and better inform our constituents across the
country that there is this need, that could be very helpful.
Thank you. Please, go ahead.
Dr. Petersen. I just have one final comment.
Senator Carper. Please, go ahead. And then I have another
question.
Dr. Petersen. I mention in my testimony comments about
PCORI, and I think PCORI is active in that area. The project
they are funding now in dementia is exactly that, how we can
bring in particularly underrepresented groups to participate in
clinical trials. So I think that this is a major effort. There
is a large grant right now called the GAP that is at NIH being
entertained to try to help recruitment in clinical trials.
This is a global issue as well. It is not just in the
United States.
Dr. Paulson. Senator, let me add a few things to what Dr.
Petersen had to say. You talked about the partnership of
industry, pharmaceutical companies working together.
I think it is important to recognize--and this is a very
good thing--that there have been sort of public-private
partnerships in the Alzheimer's realm, and there have been real
collaborations among centers across the country to move forward
here.
The point I really want to make is, it gets back to this
issue of nihilism and whether, in fact, we can get health-care
providers to recognize that if you diagnose people earlier and
you let them know about clinical trial opportunities, there is
a chance to make a difference.
Why has cancer led to new therapies in cancer? It is
because so often people who have been diagnosed with cancer are
put into clinical trials. They sign up quickly. Doctors
recognize the importance of that.
We need to change, again, the dynamic, and I think we are
beginning to for Alzheimer's.
Senator Carper. Mr. Chairman, my time has expired. Could I
ask unanimous consent for an extra 20 minutes? [Laughter.]
Senator Toomey. Objection is heard. But we are going to
begin a second round.
Senator Carper. That is great. I will come back.
Senator Toomey. I just have a brief question I am going to
direct to Dr. Petersen, and then I know Senator Stabenow has a
question.
I would like to touch on something that is a little bit
disturbing. There is a natural tendency, I think, when faced
with what seems to some to be a hopeless diagnosis to cling to
a false hope, and there have been false cures that have been
suggested.
I think we have heard that cookware can cause Alzheimer's,
that cinnamon can cure it, and some are suggesting marijuana is
a cure, or there are certain games you can play on your iPhone.
This must be extremely frustrating to the scientists who are
with us, in particular, but it is terribly unfair to families
and patients to have a false hope that has absolutely no basis
in reality.
Do you have any advice for patients or for families,
caregivers, about this notion of these false hopes?
Dr. Petersen. It is a huge industry out there to put out
nutraceuticals, various supplements, medical foods, or ``my
brain game is better than your grain game''--huge industry out
there.
I do some work with the Federal Trade Commission actually
on products that are put on the market and are making egregious
claims about what they might do for aging and memory and all
that. So it is an active process. I am sure Dr. Paulson spends
a good part of his practice as well sort of debunking some of
these, because people will come in with printouts of these
types of--there are websites out there that are credible. The
Alzheimer's Association, alz.org, is one of them that provides
reliable information: what is good, what is not good, and what
can be done.
So I think that, again, this is an educational activity
that we can all participate in, trying to educate the
physicians as well as the families and caregivers.
Senator Toomey. Senator Stabenow?
Senator Stabenow. Thank you very much. I just had one
question, a follow-up with Dr. Petersen.
At the Finance Committee, as we look at some of the
financial pieces of this, when we look at the health costs--you
said that by 2050, we could face a 420-percent increase,
basically top over $1 trillion in costs for Alzheimer's
disease. That is a big number.
So I am wondering, because we have jurisdiction over
Medicare and Medicaid on this committee, what more should we be
doing to combat the disease? What should we, from a Medicare
and Medicaid standpoint, be looking at?
Dr. Petersen. Well, as we discussed earlier, I think the
HOPE Act, if it is translated into its real promises of aiding
people with a care plan going forward--so it is not just stop
paying the physician at the time of diagnosis but there is an
actual care plan that is compensated afterward--that will
reduce costs down the road.
So the more knowledge, the more care planning--there have
been a variety of studies, some done at the University of
Pennsylvania actually, documenting that if you follow people
when they get discharged from the hospital with dementia--they
have other medical problems, get discharged from the hospital--
if you follow up with them, you deal with them at home, you
have a lifeline for them so that they can contact people about,
``Is this part of my disease or is this something I need to be
concerned about,'' you can reduce the subsequent
hospitalizations that can occur in people with Alzheimer's
disease--not that we refuse their care, by any means, but we
are dealing with it in a more educated fashion.
But I think the HOPE Act is one real tangible way that we
will actually have a chance to remediate some of those costs
with Medicare and Medicaid.
Senator Stabenow. Dr. Paulson, do you have anything to add
to that in terms of anything else we should be specifically
looking at in Medicare and Medicaid at this point?
Dr. Paulson. I agree completely with Dr. Petersen. I love
the fact that there would be comprehensive care planning. I
actually would love to see that more than once. And the reality
is, this disease changes over time. It is not the same disease
in year 1 versus year 5.
I do not know the specifics of how Medicare and Medicaid
should be involved in this, but I do believe that we need to
look beyond that initial diagnostic period and the planning
period and recognize that this is a progressive disease that
lasts for years, if not decades, in every individual who has
it, and we need to be thinking about the long-term approach.
Senator Stabenow. Thank you.
Senator Toomey. I want to thank our witnesses for joining
us.
Dr. Petersen, do you have one last comment?
Dr. Petersen. Just one short comment on that. With Medicare
and Medicaid, CMS is already funding the IDEAS study that
Connie mentioned, and that is tremendously important, because
if we demonstrated, in fact, that amyloid imaging helps the
outcome of the patient, we may, in fact, reduce costs down the
road.
So I think that investment is incredibly important. So
thank you for that.
Senator Toomey. Thank you. Members of the committee will
have 5 business days to revise and extend their remarks.
I want to thank our witnesses for their very, very helpful
and valuable testimony. I want to thank Senator Stabenow for
the really great work that she has been doing in this field.
I want to recognize Senator Carper.
Senator Carper. Is this when I get my 20 minutes?
Senator Toomey. The clock is ticking.
Senator Carper. I will be uncharacteristically brief. I
would like to ask one question about cognitive screenings in
Medicare annual wellness checkups.
One of the pieces of legislation I worked on in the
Affordable Care Act, I think along with Senator Stabenow, was
one to include cognitive screenings in Medicare annual wellness
checkups. I think sometimes months, maybe even years can go by
between the first signs of dementia and a medical diagnosis,
even though early detection and treatment might mean better
outcomes for the patients and better health outcomes, better
experiences.
I just want to ask you this question. Do you know how
often--do you have any idea how often Medicare beneficiaries
receive these cognitive screenings as part of their annual
wellness checkups? Do you have a feel for that? What can we do
in Congress to help increase the rate of annual wellness
checkups and cognitive screenings being provided to seniors?
What other approaches can physicians take to identify
cognitive impairment and reduce the likelihood of a delayed
diagnosis of dementia?
Dr. Petersen. Thank you. I think that was an incredibly
important move forward with regard to the annual screenings.
Senator Carper. Would you say that again? [Laughter.]
Dr. Petersen. I think it was very, very important, because
it now puts cognitive evaluation on the radar screen like
another vital sign. So in addition to knowing the heart rate,
the blood pressure, the blood sugar, we now have an index of
cognitive function. That is the good news, and I think that is
a major step forward.
Where we are not as satisfied is in the uptake of visits.
Dr. Shari Ling is a Federal member from CMS on the advisory
council, and she has informed us on numerous occasions that the
uptake has been disappointingly low, and I think that, again,
this is another service that we can provide with education, and
perhaps maybe the HOPE Act now is going to give the physicians
a rationale for why they might want to identify cognitive
problems sooner rather than later.
We can now do something. We can help the family and the
patient. On our side, I must say that the legislation said
there should be a cognitive assessment, and that is great, but
now we have to let the primary care physicians know what is an
adequate cognitive screen. Is it just saying, ``Hey, how is
your memory?'' or do we do test A or test B?
So we have to demonstrate our best recommendations for the
primary care physicians as to what tools to use and then, what
do you do with the results of the tool?
So that is underway right now, and there are several
exercises addressing that.
Senator Carper. Does anyone else want to comment on that?
Dr. Paulson. I completely agree with Dr. Petersen. I think
you need to recognize that Dr. Petersen is one of the
individuals who is primarily responsible for recognizing that
you can find early cognitive changes, well before dementia, and
that makes a difference.
So this kind of an effort, this kind of screening, must be
implemented, and we are moving in that direction.
Senator Carper. Mr. Chairman, thank you for those extra
minutes.
Thank you all, again.
Senator Toomey. Thank you, Senator Carper.
Thank you all for your participation, and thanks to the
many guests who came in attendance.
The hearing is adjourned.
[Whereupon, at 4:02 p.m., the hearing was concluded.]
A P P E N D I X
Additional Material Submitted for the Record
----------
Prepared Statement of Connie B. Karasow, Caregiver
Good afternoon, Chairman Toomey, Ranking Member Stabenow, and
members of the subcommittee. Thank you for this opportunity to address
the issues associated with being a care partner for individuals living
with Alzheimer's disease and other dementias.
More than 5 million Americans are living with Alzheimer's, and
without significant action, as many as 16 million Americans will have
Alzheimer's disease by 2050. More than 10,000 baby boomers a day will
turn 65 and as these baby boomers age, one in eight will develop
Alzheimer's. This explosive growth will cause Alzheimer's costs to
Medicare and Medicaid to increase from $160 billion today to $735
billion in 2050 (in today's dollars) and threatens to bankrupt
families, businesses, and our health-care system. Unfortunately, our
work is only growing more urgent.
It is an honor to represent the over 5 million Americans living
with the disease and more than 15 million care partners who love them.
Alzheimer's disease is not a respecter of role, rank, or relationship.
Those afflicted with Alzheimer's disease are adept at concealing
their confusion, embarrassment, frustrations, and fears, often before
their partners begin to realize that there is a problem. This was
certainly true in our case. The cues were subtle, and I had a demanding
career. It wasn't until the notes were piling up, including cues on his
hands, that I suggested we see someone to eliminate the big ``A'' fear.
On November 11, 2010, after some seemingly simplistic tests, we
were told by Dr. Weisman that my Mark, a 70-year-old proud man, devoted
husband, and father, had Alzheimer's disease, a progressive, fatal
disease of the brain. Based on those ``simplistic'' tests, we were told
Mark was on the ``bunny slope''--we could expect a gradual decline. No
direct diagnostic tests were available, and we were often told, ``no
one ever really knows until they are dead and you can see it in the
brain.'' Painfully glib, but true. Mark was prescribed medication to
try to extend his memory, and we were sent on our way stunned, reeling,
and projecting scenarios we could never fully appreciate.
Following Dr. Weisman's diagnosis, Mark experienced depression,
anxiety, and obsessive-compulsive behaviors that led me to look for a
geriatric psychiatrist, not an easy specialist to find. I found someone
who was compassionate and intelligent but untrained in dementia. She
prescribed medication for Mark's symptoms, and at each session she give
Mark a pep talk by saying ``you are not typical Alzheimer's,'' an
oxymoron that reinforced our hope and denial.
If Mark was not typical Alzheimer's, what typically was he, and was
he receiving the right protocols? Another neurologist was recommended.
In August 2015, we met with a clinical neuropsychologist for further
testing. Mark endured six grueling hours of testing, including
assessments of intellectual functioning, behavioral observations,
visual and verbal capabilities, memory orientation, concentration and
working memory, verbal learning, language skills, motor and emotional
functioning, and executive functioning. Following this battery of
tests, Mark's driver's license was revoked, and Mark left the session
feeling traumatized, frustrated, and ``not typically'' angry. The
results indicated subcortical features, dementia appears to be present,
mild-to-moderate in severity. However, the ``precise nature'' of Mark's
dementia was ``unclear'' from the test data alone. We went back to the
referring neurologist who, with a dismissive wave of his hand, declared
that he didn't agree with the diagnosis and that was all he could do.
We went back to Dr. Weisman, who was clearly disturbed with what
Mark went through. Knowing Mark's scientific curiosity, he suggested a
clinical trial--the Imaging Dementia--Evidence for Amyloid Scanning
(IDEAS) study. The IDEAS study will determine the clinical usefulness
on patient-oriented outcomes of a brain PET scan that detects amyloid
plaques, a core feature of Alzheimer's disease. This study is
particularly helpful in determining a diagnosis for people like Mark
who do not present with typical dementia or cognitive decline. After
our previous experience, it was so reassuring to know that there are
doctors who care enough to help us pursue a confirmed diagnosis and
understand how important this really is.
When Mark had the PET scan that confirmed his diagnosis, all of the
debate, searching, and uncertainty was put to rest and the real work of
living with the disease began. Mark is willing to engage in other
trials and wants to donate his body when he dies. It is his desire to
salvage something good from the nightmare of watching the
disintegration of his mind and life.
We joined an Alzheimer's Association support group where we shared
knowledge and survival skills. Issues for care partners have included:
our children's distrust based on fear; how to get rid of guns; stealth
banking; thermostat wars; repetition, the date, family information,
media, etc.; hunger strikes; isolation; support; grieving; and survivor
guilt. We established a Durable Power of Attorney, Medical Directives,
wills, financial planning, medical equipment, shoes for his gait,
bathing, diet, weight loss, and family/friends engagement.
For me, coping means trying to stay present, with him, in his space
as long as his mind allows me. The rate of stress and depression has
been described as ``unique'' to caregivers. Everyone says ``it's hard''
and that is the simple truth. The awareness that self care of my mind,
body, and spirit is critical to survival is growing faster than the
resources to make it a reality.
Adult day care two days a week for my husband, and me, is
expensive, and I know the costs will increase over time. My husband
thought he was preparing to leave his family some financial security
that will melt like the snow in spring. However, I am also concerned
for those homeless, poor and working poor, who lack transportation and
childcare let alone eldercare. Without knowledge, health care, and case
management resources, families living in the margins of our society
cannot hope to manage the daily demands of those afflicted with
Alzheimer's disease. Investment in Alzheimer services can prevent the
terrible social and fiscal costs in social services due to the
dissolution of families.
Before Mark enrolled in the IDEAS study and was able to get an
accurate diagnosis, I was asked, ``what difference would a precise
diagnosis make?'' A fair question since we know at this moment there is
no cure. Trying to express this isn't easy.
I looked up the quote ``Better the devil you know (than the devil
you don't).'' This is said when you think it is wiser to deal with
someone or something familiar, although you do not like him, her, or
it, than to deal with someone or something you do not know that might
be worse.
I believe there is power in naming; how can we cure something if we
don't even know its name?
On a practical level, an early and accurate diagnosis of
Alzheimer's disease affords the individual the opportunity, dignity,
and respect of participation and involvement in financial and legal
decisions with his or her family. Legislation like the HOPE for
Alzheimer's Act, which allows individuals newly diagnosed with
Alzheimer's disease or a related dementia to have a care planning
session with a health-care provider, would do just that. If HOPE had
been around at the time of Mark's diagnosis, I am certain that we would
have felt much less alone in this fight.
Of the more than 5 million American seniors currently living with
Alzheimer's disease or another dementia, only 33 percent are aware of
the diagnosis. Studies show that one of the reasons doctors do not
disclose an Alzheimer's diagnosis is insufficient time and resources to
provide support to patients and caregivers at the time of diagnosis.
The HOPE for Alzheimer's Act works by incentivizing health-care
practitioners to: (1) dedicate time and resources to fully inform a
beneficiary about the diagnosis; (2) have a meaningful discussion of
treatment and support options; (3) develop a care plan specific to the
beneficiary, accounting for all other conditions; and (4) document the
diagnosis and care plan in the patient's medical record that is shared
with all providers treating the individual.
Following a diagnosis, care planning is crucial to improving
outcomes, maintaining quality of life, controlling costs, and planning
appropriately for the future. The HOPE for Alzheimer's Act builds on
existing Medicare coverage of a diagnosis to provide individuals with
Alzheimer's and their caregivers comprehensive care planning services,
including information on medical and non-medical options for ongoing
treatment, services, and supports. The HOPE for Alzheimer's Act would
also allow the care planning discussion to occur with or without the
beneficiary present, allowing for the facilitation of more effective
communication between the health-care provider and the beneficiary's
family, caregivers, or personal representative.
Additionally, the HOPE for Alzheimer's Act ensures documentation of
a diagnosis and the care plan in the beneficiary's medical record.
Although Medicare requires documentation of a diagnosis for purposes of
reimbursement, there is no requirement for a diagnosis to be documented
within an individual's medical record. Documentation is critical to
ensuring effective management of comorbidities (such as heart disease
and diabetes) by an individual's care team and allows for care
coordination among treating physicians.
Finally, by requiring a provider outreach campaign upon
implementation, the HOPE for Alzheimer's Act also helps ensure
beneficiaries have access to these services by educating appropriate
providers about the benefit and its elements. The HOPE for Alzheimer's
Act is also consistent with the National Plan to Address Alzheimer's
Disease, which calls for educating health-care providers as well as
supporting individuals and families upon diagnosis to prepare for care
needs.
The HOPE for Alzheimer's Act may also work to reduce the disparity
between costs for Medicare beneficiaries with Alzheimer's disease and
those without. More than 85 percent of people with Alzheimer's and
other dementias have other comorbid chronic conditions, and they are
about 4 times more likely to have six or more chronic conditions,
adding to the complexity of their care. Consequently, hospitalization
rates are twice as high and costs are nearly three times as high for
Medicare beneficiaries with Alzheimer's compared with other
beneficiaries. A recent analysis of the HOPE for Alzheimer's Act by
Healthsperien, which is comprised of former CBO staff, revealed that
this legislation would lead to reductions in hospitalizations and
emergency room use as well as improved management of comorbid chronic
conditions and better management of medications for those receiving the
benefit. As a result of the legislation, net federal health spending
would decrease by $692 million over a 10-year period.
Until a scientific breakthrough leads to an effective treatment or
cure for Alzheimer's disease, we must work to improve the Medicare
system to provide better care for American families facing this
diagnosis. The HOPE for Alzheimer's Act is a win-win: it will improve
the quality of care and quality of life for Medicare beneficiaries and
families facing Alzheimer's disease, while reducing Medicare
utilization and spending for those who receive the benefit.
Thank you again for the honor and opportunity to testify today. I
hope that I have been able to address the issues of caregivers and
their loved ones with the respect and recognition they deserve. More
importantly, I hope my message conveyed to you the exact nature of the
problem through our eyes and perhaps has given you some insights on how
your leadership could be instrumental in the current and future needs
of our families and communities.
______
Prepared Statement of Henry L. Paulson, M.D., Ph.D., Director,
Michigan Alzheimer's Disease Center, University of Michigan
Good afternoon, Mr. Chairman, ranking member, and members of the
committee. I flew here today from Michigan to express my support for
the Health Outcomes, Planning, and Education for Alzheimer's Act, also
known as the HOPE for Alzheimer's Act, that was introduced by my
Senator Debbie Stabenow. I am currently the director of the Michigan
Alzheimer's Disease Center at the University of Michigan where I am
also the Lucile Groff Professor of Neurology and co-director of the
U.M. Protein Folding Diseases Initiative. I am honored to speak on
behalf of my colleagues, our patients, and their families to express a
united vision for comprehensive care and compassion for those who are
living with dementia.
As director of the Michigan Alzheimer's Disease Center, a Center
that links the three major research universities in Michigan, I bring
with me the support of countless colleagues across our State who
provide care for those with Alzheimer's and other forms of dementia.
Collectively, we recognize that the comprehensive care planning
services provided by the HOPE for Alzheimer's Act will improve the
lives of millions of American families confronting dementia. This
impact is principally what drives our support: through the HOPE Act, we
will provide better care that makes a real difference in the lives of
many. By addressing this critical medical need and helping dementia
patients and their families navigate the difficult road ahead, the HOPE
Act also will reduce Federal health care costs associated with this
devastating disease by nearly $700 million over the next decade. It's
no wonder that this measure has garnered broad bipartisan support. It's
the kind of legislation that will inspire a new generation of hope, and
I applaud Senators Stabenow and her colleagues for having the vision to
craft and support this act.
Each day, over a thousand Americans receive the diagnosis of
dementia. Most often, the specific diagnosis is Alzheimer's, which
currently affects more than 5 million Americans. Other related
dementias, including Lewy body dementia, frontotemporal dementia, and
vascular dementia, affect millions more. As a neurologist who cares for
persons with dementia, I have seen the deep fear, anxiety, and
uncertainty that can accompany this diagnosis. Busy and overworked
health care providers may only be able to offer a simple fact sheet
about the disease or provide a prescription for a medication. The
future brought on by this slowly progressive disease too often remains
uncharted and frightening.
To someone newly receiving the diagnosis, the questions come fast
and furious:
What does my future hold?
What changes in my life do I need to make now?
How do I prepare for these inevitable changes as my disease
progresses?
What kind of medical care do I need and when?
Who will help my family?
How do I connect with others who understand?
To someone caring for a loved one, these same questions, and
others, surface:
Where can I turn for help?
How will I be able to provide care while also working or
managing the household?
How can I possibly cope with the new demands and stresses I'm
facing?
What can we do to stay as healthy as possible and close as a
family?
Sadly, too often patients and their families never get the chance
to consider these questions because the diagnosis is not provided to
them. Astonishingly, approximately two thirds of seniors diagnosed with
Alzheimer's are unaware of their diagnosis. In no other common disease
affecting seniors--cancer, heart disease, hypertension--are so many
unaware of their disease. We must do a better job of diagnosing
dementia earlier in the course, and making our patients and their
family caregivers aware of the diagnosis. Recent evidence shows that
early knowledge about the disease improves long-term outcomes for those
with cognitive impairment.
The HOPE for Alzheimer's Act will ensure that patients and families
receive answers to these questions, allowing them to work with health-
care providers to develop a proactive plan to optimize their health and
security as they deal with the changes wrought by dementia. I cannot
think of anything more pressing for our patients right now. While we in
the field are working hard to develop better therapies and ultimately a
cure for Alzheimer's, we are not there yet. The HOPE Act will make a
difference now.
A few years ago we at the University of Michigan realized that,
even at a major research university like ours, newly diagnosed patients
and their families sometimes fail to receive all the information they
need in a timely manner. Thus, we piloted a new program, the
Multidisciplinary Diagnostic Medical Visit--a ``team'' approach to
dementia that gives patients and caregivers the opportunity to meet
with a neurologist, neuropsychologist, nurse practitioner and social
worker for a comprehensive appointment during which we discuss test
results, diagnosis, and care planning. Our pilot program also shortens
the time from first contact to disclosure of a diagnosis. In short, the
program has worked very well: patients and caregivers overwhelmingly
support our comprehensive approach, and feel they have a much greater
awareness of community support and services as a result. Care planning
also allows us to address critical issues that families might not
otherwise raise--for example, is it safe for my loved one to keep
driving? Or to live alone? In the process, we are continually reminded
that each patient is unique. Comprehensive care planning must be
customized, taking into account the specific type of dementia, stage of
disease, other chronic medical disorders, and family dynamics, among
other factors.
Unfortunately, only a small percentage of persons with dementia
receive their diagnosis through a major research center such as ours,
where we have the privilege to pilot a multidisciplinary approach. That
is why the HOPE Act is so important: it will ensure comprehensive care
planning for dementia across the country at all types of medical
facilities, small and large.
When we think of disease treatment most of us think, first, of
medicines. But for dementia, the various components that go into state-
of-the-art care extend far beyond medicines. We now know, for example,
that non-pharmacologic interventions play a vital role in brain health.
Recent studies show that regular aerobic exercise improves cognitive
function. Adequate sleep, and the right kind of sleep, may help rid us
of the toxic proteins that accumulate in dementia. Cognitive training
can make a difference. Careful attention to other chronic illnesses,
such as depression, diabetes or heart disease, improves the lives of
those encountering dementia. Finally, access to support groups, for
patients and caregivers alike, can be a life saver. Access to
comprehensive care planning will ensure that these vital components are
offered broadly to all of our patients.
I close on a personal note. Throughout my career, I have sought to
understand the mechanisms underlying brain diseases so that we might
develop cures. When given the opportunity to direct the Michigan
Alzheimer's Disease Center 5 years ago, I jumped at the opportunity.
Why? Partly because it's an exciting time in the field; our
understanding of dementia has advanced to the point where we are now
testing promising, potential disease-modifying treatments. Partly
because there's so much we still don't know, and need to figure out.
But mostly because this disease, by affecting millions of Americans,
touches us all--whether through a family member, a friend, a neighbor,
a colleague. There are so many faces to this disease. I ask you now to
think about someone you know who has confronted dementia. I am thinking
of a colleague, a brilliant physician loved by his patients, who
retired this year when he faced the earliest signs of Alzheimer's. Like
you, I want to make a difference in the lives of those with dementia.
Until we have a cure for Alzheimer's and other dementias, we need to
provide patients and families with the means to cope and the reasons to
hope for a better future. This is precisely what the HOPE Act will do.
Thank you for the opportunity to speak to you today. I am deeply
encouraged by the HOPE Act, and personally, I have great hope for the
future of those with Alzheimer's and other dementias. I look forward to
getting back to Michigan to continue our work toward that better future
and would be happy to answer any questions that the committee has for
me.
______
Prepared Statement of Ronald C. Petersen, Ph.D., M.D., Chair, Advisory
Council on Research, Care, and Services, National Alzheimer's Project
Act
Good afternoon, Chairman Toomey and Ranking Member Stabenow. My
name is Ronald C. Petersen, Ph.D., M.D., and I serve as the chair of
the Advisory Council on Research, Care, and Services for the National
Alzheimer's Project Act. I am also a Professor of Neurology and
Director of the Mayo Alzheimer's Disease Research Center at the Mayo
Clinic in Rochester, Minnesota. Recently, I was appointed to the World
Dementia Council by United Kingdom Prime Minister David Cameron.
Alzheimer's disease is the most devastating disorder of our
generation. We are all familiar with persons who suffer from the
disease, as well as families and caregivers of those individuals who
are keenly aware of the urgency in addressing this disease now.
It is estimated that there are over 5.1 million people currently in
the United States with Alzheimer's disease, and that number is
projected to exceed 13 million by 2050. A recent research project from
the RAND Corporation published in the New England Journal of Medicine
based on data from 2010 indicated that the cost to the U.S. healthcare
and long-term care systems for Alzheimer's disease was between $159
billion and $215 billion. This is in comparison to similar 2010 data
for heart disease estimated at $102 billion and cancer at $77 billion.
As such, this was the first documentation that Alzheimer's disease is,
in fact, the most costly disease to the U.S. health economy.
In 2011, President Obama signed the National Alzheimer's Project
Act into law. This law required the Secretary of Health and Human
Services to develop the first U.S. Plan to Address Alzheimer's Disease.
The first Plan was published in May of 2012, and it has been revised
annually. The law also required the appointment of an advisory council
to advise the Secretary on the development and revision of the Plan,
and the Advisory Council, which I chair, has been meeting quarterly
since 2011. The law also required that the Advisory Council generate a
separate set of recommendations that would go directly to the Secretary
and to Congress outlining our opinions and necessary steps for treating
Alzheimer's disease and related dementias. These recommendations are
not constrained by any current fiscal considerations.
The primary goal of the National Plan is to effectively treat and
prevent Alzheimer's disease by 2025. One of the corresponding
recommendations that the Advisory Council has put forth to the
Secretary and Congress urges the Federal Government to allocate at
least $2 billion a year for research in Alzheimer's disease. Currently,
with the recent increase in the FY 2016 budget, the Federal allocation
is $991 million. We are making progress, but we have a long way to go.
According to a report from the Alzheimer's Association, caring for
persons with Alzheimer's disease in 2015 cost the United States $226
billion, 70% of which came from Medicare and Medicaid. This means that
approximately one in five Medicare/Medicaid dollars was spent on
Alzheimer's disease. By 2050, that annual cost is estimated to be
greater than $1.1 trillion. This represents a 420% increase over that
timeframe and indicates that, by 2050, we will be spending one in three
Medicare and Medicaid dollars on Alzheimer's disease. The cumulative
costs from now until 2050 will be over $20 trillion, again 70% of which
will be covered by Federal and State governments. Therefore, if we were
to be successful at addressing the primary goal of the Plan, to develop
an effective treatment by 2025, these figures may become modifiable. We
need to act now to avert this untenable scenario for our country.
Putting this in the context of the primary goal of the National
Plan, if we were to develop by 2025 a disease-modifying therapy that
delayed onset of the disease by 5 years, this would reduce the number
of individuals with Alzheimer's disease over the succeeding 5 years,
from 8.2 million to 5.8 million. This would result in a savings of $83
billion from $451 billion to $368 billion. If you project these numbers
out to 2050, at which time we indicated that we would be spending $1.1
trillion without a disease-modifying therapy, that number would be
reduced to $734 billion.
Without an effective treatment, cumulatively over the 10 year
period from 2025 to 2035, Federal and State governments would pay an
estimated $3.2 trillion. Again, assuming a disease-modifying therapy by
2025 over the ensuing 10 years, Federal and State governments would
appreciate a cumulative savings of $535 billion. Even in the first year
following a disease-modifying therapy, we would be saving $3 billion. I
do not mean to inundate you with statistics, but the numbers are
impressive that, for as little of an investment of $2 billion a year
for Federal research, the impact in savings to the Federal health-care
system would be enormous.
So, are we there? As I mentioned, the current Federal budget for
Alzheimer's disease research is approximately $991 million. In 2014,
Congress passed the Alzheimer's Accountability Act which required the
National Institutes of Health to generate an annual Professional
Judgment Budget, also called a bypass budget, to estimate what the
annual costs would be to reach the goal of the plan by 2025. Last year,
Dr. Francis Collins, Director of the National Institutes of Health,
announced the first bypass budget for FY17 at the Advisory Council's
summer meeting. He estimated that the recommended increase in the
budget for FY17 would be $323 million. He and his staff are currently
working on the 2018 bypass budget.
The research community is poised to make the necessary progress to
make these treatment projections a reality with the disease-modifying
therapy by 2025. The academic field is working on the notion of
prevention of Alzheimer's disease. By prevention, we mean a delay in
the onset or the slowing of progression of the disease, which is
entirely realistic. Through recent research advances funded largely by
NIH, such as the Alzheimer's Disease Neuroimaging Initiative and our
Mayo Clinic Study of Aging, we have become able to identify the
underlying disease process causing Alzheimer's disease in cognitively
normal individuals. This research opens the door for designing more
efficient and effective clinical trials.
As we move toward earlier and earlier identification of the disease
through the use of clinical tools and biomarkers, we are developing
better techniques to assess individuals. The Patient Centered Outcome
Research Institute (PCORI) has focused a recent dementia initiative on
evaluating clinical measures from the patients and, and very
importantly, from caregivers, to assist in the development of these new
therapies.
In closing, I would like to thank Congress for its proactive stance
in addressing these issues. The time is now to act at continuing to
increase the budget for Federal funding of research for Alzheimer's
disease because the consequences of these projections are otherwise
unsustainable. Alzheimer's disease is the most costly disease in this
country and will become increasingly so unless we develop these
effective therapies.
I would like to commend both my Federal and nonfederal colleagues
on the Advisory Council for Research, Care and Services for the
National Alzheimer's Plan as well as our colleagues in the Department
of Health and Human Services, most notably in the office of the
Assistant Secretary for Planning and Evaluation and the National
Institutes of Health. Our work is just beginning. I appreciate the
opportunity to share these thoughts with you this afternoon and would
be happy to entertain questions. Thank you.
______
Mayo Clinic
College of Medicine
_______________________________________________________________________
200 First Street SW
Rochester, Minnesota 55905
507-284-2511
Ronald C. Petersen, Ph.D., M.D.
Cora Kanow Professor of
Alzheimer's Disease Research
507-538-0487, Fax 507-538-6012
October 3, 2016
Patrick J. Toomey
U.S. Senator
United States Senate
Washington, DC 20510
Dear Senator Toomey:
I would like to thank you for the opportunity to testify before the
Senate Finance Subcommittee on Health Care on ``Alzheimer's Disease:
The Struggle for Families, a Looming Crisis for Medicare'' on July 13,
2016. I was pleased to share my views with you and the committee and
greatly appreciate the venue to discuss this looming crisis.
I recently returned from Australia where I toured the country,
discussing Alzheimer's research and policy issues in the United States.
Since Australia is developing a national strategy, they were primarily
interested in our approach to the U.S. Plan to Address Alzheimer's
Disease. I spoke at the Australian National Press Club on World
Alzheimer's Day, September 21, and entered into a rich discussion
following the presentation. I cited many of the statistics for them
that I had presented to your subcommittee.
I appreciate the opportunity respond to Senators Grassley and Burr that
you requested. I will address them as enclosures.
Senator Toomey, I again want to express my appreciation to you for my
opportunity to respond to you and Senators Grassley and Burr. Please do
not hesitate to contact me at any time.
Sincerely,
Ronald C. Petersen, Ph.D., M.D.
Professor of Neurology
Distinguished Mayo Clinic Investigator
Cora Kanow Professor of Alzheimer's Disease Research
Cadieux Director, Mayo Alzheimer's Disease Research Center
Director, Mayo Clinic Study of Aging
______
Mayo Clinic
College of Medicine
_______________________________________________________________________
200 First Street SW
Rochester, Minnesota 55905
507-284-2511
Ronald C. Petersen, Ph.D., M.D.
Cora Kanow Professor of
Alzheimer's Disease Research
507-538-0487, Fax 507-538-6012
October 3, 2016
Charles E. Grassley
U.S. Senator
United States Senate
Washington, DC 20510
Dear Senator Grassley:
I would like to thank you for your insightful comments regarding the
status of funding for Alzheimer's disease and other dementias. I
appreciated the opportunity to testify before the Senate Finance
Subcommittee on Health Care on July 13, 2016, and greatly appreciate
your interest.
The issues you raise regarding Alzheimer's disease funding and its
impact on citizens of Iowa and the country are particularly germane.
With respect to your specific question on the potential of the EUREKA
prize, I will offer the following.
A substantial prize such as $10 million for Alzheimer's disease would
be particularly exciting. While there are many endeavors that could be
addressed, I believe that early recognition of the diagnosis, and most
importantly, identifying those at risk for developing the disease in
the future would be most productive. Due to the magnitude of the
problem, I do not believe we can wait until people become clinically
symptomatic to institute treatment. Rather, from a public health
perspective, we need to prevent the disease. As such, there has been a
great deal of work on identifying early biomarkers of the disease, even
when people are clinically normal, and I believe that this is an urgent
need. I would invest in increased development and validation of
biomarkers for Alzheimer's disease that we could employ in the
population as early as possible. Preferably, these would be relatively
inexpensive and noninvasive to be maximally useful, but in the interim,
we need to validate current sets of biomarkers. When this work is
completed, intervention with disease modifying therapies could be
employed at the appropriate time in the disease process.
I realize that this is just one opinion, but I think it reflects a
great deal of activity currently underway in the field of Alzheimer's
disease research. Again, I would like to thank you for your keen
interest in the topic and your proposal to establish a EUREKA prize.
Sincerely,
Ronald C. Petersen, Ph.D., M.D.
Professor of Neurology
Distinguished Mayo Clinic Investigator
Cora Kanow Professor of Alzheimer's Disease Research
Cadieux Director, Mayo Alzheimer's Disease Research Center
Director, Mayo Clinic Study of Aging
Mayo Clinic
College of Medicine
_______________________________________________________________________
200 First Street SW
Rochester, Minnesota 55905
507-284-2511
Ronald C. Petersen, Ph.D., M.D.
Cora Kanow Professor of
Alzheimer's Disease Research
507-538-0487, Fax 507-538-6012
October 3, 2016
Richard Burr
U.S. Senator
United States Senate
Washington, DC 20510
Dear Senator Burr:
I would like to thank you for the opportunity to testify before the
Senate Finance Subcommittee on Health Care on July 13, 2016, regarding
Alzheimer's disease. I found the questions and the subsequent exchange
to be extremely valuable, and I was impressed with the committee's
commitment to this topic.
With respect to the specific questions that you have raised following
the hearing, I would like to offer these responses.
Question 1: What is the state of the research in developing more
effective diagnostic tools for this disease?
I believe the field is advancing very rapidly with respect to the
development of diagnostic tools for Alzheimer's disease. In particular,
formerly, one could not make the diagnosis of Alzheimer's disease until
the individual had passed away and an autopsy on the brain was
performed. At the time of autopsy, the two signature proteins, amyloid
comprising the neuritic plaques and tau comprising the neurofibrillary
tangles, were sought. The field has progressed sufficiently such that
we can now identify these two proteins, amyloid and tau, in living
individuals using positron emission tomography (PET) scanning
techniques. We can also detect their presence during a lumbar puncture
to obtain cerebrospinal fluid. This is a tremendous advance in the
field since, as therapeutics are developed, they can be targeted
specifically toward these proteins and their effect on the proteins can
be measured using these new detection techniques.
Consequently, as a clinician at the Mayo Clinic, I am much more
confident in making my diagnoses using these tools to aid in our
clinical assessment. Biomarkers will become increasingly valuable as
therapies evolve.
Question 2: What is the timeline for development of a game-changing
drug for patients with Alzheimer's disease?
At any given time, there are more than 50 potential therapeutic
candidates under investigation around the world. However, relatively
few make it to Phase 3 of FDA testing. Currently, one Phase 3 result
will be reported later this year pertaining to the anti-amyloid
antibody, solanezumab. This compound produced by Eli Lilly and Company
has been tested in two previous trials which have not proved
successful. However, using the new imaging techniques described above
in response to Question 1, the proponents are now confident that they
are using the potential therapy in appropriate participants, i.e.,
individuals who have demonstrated the amyloid protein in their brains.
As such, this will be a realistic test of this particular compound.
On a related note, another anti-amyloid antibody, aducanumab, has
demonstrated in Phase 1 results that it can, in fact, lower the amyloid
levels in the brain over the course of treatment for 12 months. These
data have been reported in a prominent journal just recently and
indicate that the antibody strategy does, in fact, work at removing the
amyloid. Since this was only a Phase 1 study, the study was not
statistically powered to detect clinical effects, but the group of
subjects who responded to the compound by demonstrating a reduction in
amyloid over the 12 months also had stabilization of their clinical
symptoms. This is very encouraging for the field, and two large global
Phase 3 trials have been launched.
All this is to say that the development of therapeutics is a very
active area in the field of Alzheimer's disease research, and we are
increasingly hopeful that a positive result will appear in the next few
years.
Question 3: What can be done to accelerate these processes in order to
reach the goals of effective treatments and cures more quickly?
This is a particularly important issue with respect to the development
of effective therapeutics. A major barrier to the development of
effective therapeutics revolves around the issue of subject recruitment
for randomized controlled trials. That is, when a clinical trial for a
therapy is designed, the recruitment phase is projected. However,
almost always, the proponents need to extend the recruitment phase
because the participants are reluctant to join the trial or, more
likely, are unaware of the trial's existence. As such, there are major
efforts underway currently to increase enrollment in randomized
controlled trials. It is not uncommon for a person with a difficult-to-
treat cancer to enroll in a clinical trial, and we need to raise the
awareness of the general public and practicing physicians. If the
physicians were more informed on the availability of clinical trials
for Alzheimer's disease, we would be able to develop effective
therapies much more efficiently and economically. As such, enrollment
in clinical trials is a major area of concern.
I need to disclose that I have consulted both for Eli Lilly and Company
and Biogen, Inc., with respect to the development of therapeutics for
Alzheimer's disease. The two compounds I mention above are sponsored by
these two companies. However, since I do a great deal of work in this
area as a clinical investigator, I do not think these involvements
alter my perception of the field. Nevertheless, I wanted you to be
aware.
Again, thank you so much for your interest in the field, and I would be
happy to expand upon any of these issues at a future point in time.
Sincerely,
Ronald C. Petersen, Ph.D., M.D.
Professor of Neurology
Distinguished Mayo Clinic Investigator
Cora Kanow Professor of Alzheimer's Disease Research
Cadieux Director, Mayo Alzheimer's Disease Research Center
Director, Mayo Clinic Study of Aging
______
Submitted by Hon. Patrick J. Toomey, a U.S. Senator From Pennsylvania
Prepared Statement of George Vradenburg, Chairman and Founder,
UsAgainstAlzheimer's
Chairman Toomey, Ranking Member Stabenow, and members of the
subcommittee:
On behalf of UsAgainstAlzheimer's, a relentless patient-centered force
committed to ending Alzheimer's disease by 2020, I applaud you for
holding this hearing on this most important issue. While a number of
congressional committees have held hearings examining Alzheimer's from
a number of angles, this session is particularly powerful because it
focuses explicitly on the devastating economic impact this disease has
on families and our Medicare program.
Multiple studies in recent years have placed the annual total cost of
our Nation's Alzheimer's epidemic in excess of $200 billion. Notably, a
2013 report by the RAND Corporation placed the direct medical costs of
Alzheimer's disease care at $109 billion (compared to cancer at $77
billion) and at $159 billion to $215 billion annually when the value of
informal care services is included.\1\
---------------------------------------------------------------------------
\1\ Michael D. Hurd, Ph.D., Paco Martorell, Ph.D., Adeline
Delavande, Ph.D., Kathleen J. Mullen, Ph.D., and Kenneth M. Langa,
M.D., Ph.D., N. Engl. J. Med., 2013, 368: 1326-1334, April 4, 2013.
Furthermore, estimates indicate that 70 percent of the total national
costs of Alzheimer's disease are shouldered by taxpayers through the
Medicare and Medicaid programs. For 2016, this would amount to about
$160 billion. To put this in perspective, $160 billion is about 24
percent of the estimated $673 billion the chief actuary estimates will
be spent in 2016 on the entire Medicare program.\2\
---------------------------------------------------------------------------
\2\ See FY 2016 HHS Budget in Brief: http://www.hhs.gov/about/
budget/budget-in-brief/cms/medicre/index.html.
Beyond the United States, global costs of this disease in 2015 were
estimated at $800 billion, or over 1 percent of global GDP. As the
prevalence of the disease triples in the coming decades with its
attendant rapid increase in global burden, entitlement costs around the
world will put increasing pressure on global balance sheets and
sovereign debt quality. A particularly troubling statistic, according
to Alzheimer's Disease International, is that by 2030 63 percent of the
global population living with Alzheimer's or other forms of dementia
will reside in low- and middle-
income countries, a percentage that will rise to 68 percent by 2050.\3\
---------------------------------------------------------------------------
\3\ Alzheimer's Disease International: World Alzheimer's Report
2015: The Global Impact of Dementia; An Analysis of Prevalence,
Incidence, Cost, and Trends, https://www.alz.co.uk/sites/default/files/
pdfs/world-alzheimer-report-2015-executive-summary-english.pdf.
While the primary focus of this hearing is rightfully the impact of
this disease on American families and on Medicare, a full discussion on
Alzheimer's and dementia cannot occur without touching on research. In
recent years, thanks to the leadership of many in this Chamber,
Congress has allocated increased resources to support Alzheimer's
research at the National Institutes of Health (NIH). While the recent
and ongoing efforts must be applauded vigorously, the reality is that
today we are committing less than $1 billion to Alzheimer's research--
about \1/6\ of 1 percent of what our government programs are spending
each year in care costs to address this disease. Increasing levels of
research investment into the broad promising scientific opportunities
in attacking this disease hold the promise of reducing this burden. We
have seen time and again, particularly in the fields of cancer,
cardiovascular disease and HIV/AIDS, that focused and intensive
commitments to research can crack heretofore vexing scientific
challenges and lead to breakthroughs in how we treat and manage a
condition. We need this same commitment, right now, to Alzheimer's
disease. The fact is that Alzheimer's is a cancer-size or greater
---------------------------------------------------------------------------
problem demanding a cancer-size or greater solution.
Over the past several years, I have been privileged to serve as an
inaugural member of the World Dementia Council to help drive forward
global action to address Alzheimer's and dementia. Over the past few
years, this panel and other experts have begun to coalesce around the
notion that a nation should commit at least 1 percent of care costs to
research efforts aimed at developing therapies and cures.
Of course, many factors play into making such research decisions
including the state of the science, the opportunities available and the
quantity of high-quality and meritorious science being proposed. I
would submit that Congress and the NIH consider the 1 percent market as
a short-term target to inform research prioritization. If we fail to
set priorities that are informed by the most significant current and
looming threats to the physical and financial well-being of our
families and the Nation overall, our future will be one of lives lost
and of fiscal ruin.
As the agency that is responsible for covering these costs, the Centers
for Medicare and Medicaid Services (CMS) needs to play a significant
role in leading our national efforts to prevent and effectively treat
Alzheimer's by 2025. Perhaps the most important action the agency can
take is to provide greater levels of support and services to
beneficiaries with Alzheimer's through their caregivers. Doing so is
another short term strategy to equip caregivers to keep their loved
ones at home and out of residential care homes for longer periods of
time and also educing emergency room and avoidable hospital admissions
or readmissions. Such action would reduce the care costs that are
burdening Medicare and delay or reduce the institutional care costs
that are challenging Medicaid.
Some significant developments to achieve these goals have occurred
during the past few weeks and are examples of issues within the Finance
Committee's jurisdiction.
Last month, the Senate Appropriations Committee advanced a fiscal year
2017 Labor, HHS Appropriations Act that included the Health Outcomes
Planning and Education or HOPE For Alzheimer's Act, a piece of
legislation long-championed by Ranking Member Stabenow and Senator
Susan Collins, Chair of the Special Committee on Aging. This bill, if
enacted, would help ensure Medicare beneficiaries with Alzheimer's
disease receive timely and accurate diagnoses as well as critically
important guidance and direction to access a range of care planning
services.
UsAgainstAlzheimer's knows far too many patients and family members who
struggled for years to obtain an accurate diagnosis as well as those
who, once diagnosed, were told there is simply nothing that could be
done for them. While no disease-modifying or slowing drug has been
approved as of today, we do know that a number of lifestyle
modifications, co-morbidity management, and supportive services can
make a difference in helping patients and their families maintain their
quality of life and plan for the future.
I urge the members of this committee to do everything you can to enact
the HOPE Act into law this Congress, through the appropriations process
or as a stand-alone bill.
More recently, just last week Ranking Member Stabenow joined Senator
Shelley Moore Capito--who lost both of her parents to Alzheimer's
disease--in introducing S. 3137, the Alzheimer's Beneficiary and
Caregiver Support Act. This bill would pick up where the HOPE Act
leaves off by authorizing Medicare to evaluate promising counseling and
supportive interventions that, when delivered to the informal or non-
paid caregivers of persons with Alzheimer's and dementia have been
shown to improve the caregiver's health and well-being, thus enabling
them to care for their loved one for longer periods of time and reduce
utilization of the health system.
A major driver of the Alzheimer's cost burden is the cost of care,
particularly institutional care, with Medicaid being the largest payer
of such care. One such model, developed by a team at New York
University and evaluated over decades, found that targeted in-person
and telephonic counseling and supports delivered to family caregivers
helped delay placement of the person with Alzheimer's in an
institutional care setting by about 18 months compared to the control
groups.
Given the cost of nursing home care--1 year in a semi-private room
costs nearly $75,000 on average according to LongTermCare.gov--such a
model could realize significant savings to individual families and to
our Federal healthcare budget. The time is ripe for CMS to conduct such
an evaluation, and I urge all members of this subcommittee to cosponsor
S. 3137 today.
I thank you for calling this important hearing, and I urge you and this
committee to continue the focus on the impact Alzheimer's will have on
the Medicare program going forward. There is much that CMS can and
should be doing to blunt this threat, and I look forward to working
with all of the members on these issues going forward.
______
Communications
----------
Aging Institute
of UPMC Senior Services and the University of Pittsburgh
Forbes Tower, Suite 10065
3600 Forbes Avenue at Meyran
Pittsburgh, PA 15213
412-864-2396
www.aging.UPMC.com
The Honorable Pat Toomey The Honorable Debbie Stabenow
Chairman Ranking Member
Senate Finance Subcommittee on
Health Care Senate Finance Subcommittee on
Health Care
248 Russell Senate Office Building 731 Hart Senate Office Building
Washington, DC 20510 Washington, DC 20510
Chairman Toomey, Ranking Member Stabenow, and committee members:
Thank you for the opportunity to speak in support of the needs of
caregivers. I serve as the Director of the Aging Institute of UPMC
Senior Services and the University of Pittsburgh where we are fervent
in our focus on the core needs of the older adult and the very real
struggle for families and caregivers, particular those providing care
for an individual with Alzheimer's Disease, or related dementia. We
have developed programs and initiatives designed to provide one-on-one
supports and education for both caregivers, as well the health
professionals that provide additional services.
In short, the needs of caregivers are great. For those providing care
for an individual with cognitive changes including Alzheimer's Disease
or related dementia and other memory disorders, there are the
additional complexities such as wandering, cognitive and functional
decline, and behavioral disturbances that heighten the demands on
caregivers. Becoming a caregiver is associated with increased
depression, poor self-care, and increased chronic illness, and many of
these caregivers must manage difficult symptoms and problematic
behaviors in addition to the physical, emotional, and financial
challenges of caregiving in the home. Moreover, becoming a caregiver is
also associated with social isolation. Caregivers must deal with
changes and challenges in their emotions, energy, living patterns,
finances, and roles. Over time, heavy duty caregivers decline more
rapidly than non-caregivers, and caregiving itself is a risk factor for
mortality.
The demands of this group have been a particular concern in
Pennsylvania, which has the country's fourth oldest population. Older
adults have a disproportionally higher burden of disease, utilization
of health care services, and the need for both family caregiving as
well as professional health care supports. In addition, according to
the Alzheimer's Association, there are more than 400,000 individuals,
throughout the state of Pennsylvania, living with Alzheimer's Disease
and related dementias with approximately 669,000 family caregivers
providing 760 million hours of unpaid service throughout the state each
year. The financial burden is also significant where nationally, more
than $214 billion, which represent one dollar out of every five spent
by Medicare and Medicaid goes to treat Alzheimer's Disease. Fifteen
million individuals provided 17.4 billion hours of unpaid care, with
60% rating the emotional stress of caregiving as high or very high, and
one-third to two-thirds reporting high levels of depression. In
response to this growing need, the Pennsylvania Alzheimer's Disease
Planning Committee and the Pennsylvania Long-Term Care Commission were
developed, both of which brought together legislators, medical
professionals, and individuals living with Alzheimer's disease
throughout the state to create comprehensive reports outlining
recommendations from the respective committees. Enacted legislation
such as the Caregiver Advise Record and Enable Act, referred to as the
CARE Act or Act 20, is a common sense solution--integrating health and
social services--that supports caregivers when loved one is
hospitalized by encouraging a more formalized provision of instructions
for medical tasks upon their loved one's return to home. In addition to
the CARE Act, recently proposed legislation such as the Alzheimer's
Beneficiary and Caregiver Support Act underscore the recommendations
from these committees and outline a strong focus and plan for
supportive action:
Recommendation--PA State Plan for ADRD: Enhance support for
family and nonprofessional caregivers and those living with
ADRD.
Recommendation--PA Long-Term Care Commission: Enhance services
provided to unpaid caregivers.
How can we prevent caregivers from feeling burdened while sustaining
and assisting them in meaningful and positive aspects of caregiving?
The approach should include not just the individual and family
counseling, participation in support groups, and telephone contact
discussed later in this testimony. It can also include tailoring multi-
component interventions in a more individualized manner. As such, more
intensive support strategies that combine education, support, and
respite into a single, extended service offered more long-term have
proven efficacy. An example of this type of approach is found in the
Resources for Enhancing Alzheimer Caregiver Help, referred to as the
REACH and REACH II protocols currently utilized by the Allegheny County
Department of Aging for their funded program called Caregiver First
Initiative through Family Links. A somewhat different approach than the
New York University's Caregiver Intervention, which the Alzheimer's
Beneficiary and Caregiver Support Act is modeled after, the REACH and
REACH II protocols merit attention due to emerging results of improving
caregivers' quality of life and serve as a first-rate example of a
local effort bringing evidenced-based practice into service delivery.
Of note, REACH II was designed to address the needs of culturally
diverse caregivers of persons with dementia, including White, Hispanic,
and African-American caregivers and has been able to show that it
improves caregiver quality of life, and was found to show benefits to
White, Hispanic, and African-American caregivers.
In addition, the following initiatives are offered free of charge to
those in the community and serve as a bridge to science, education, and
service to deliver care that is both evidenced-based and efficient.
They reflect the mission of the Aging Institute by providing
integrated, comprehensive, and timely access to a full range of
services for older adults, their friends, caregivers, family members,
and healthcare professionals without financial restriction.
Education--In 2013, the Aging Institute developed the INSPIRE
(Inspiring New Solutions and Providing Individualized Resources and
Education) Advanced Caregiver Series. Through six weekly sessions,
personalized, comprehensive, and individualized support as well as in-
depth dementia education is provided to long-term caregivers,
particularly those providing in-home care to older adults. Core course
content includes:
Managing the disease's progression;
Identifying and responding to behavioral issues;
Dealing with depression; and
Crisis resolution.
Pre-course and post-course one-on-one sessions are conducted with
participants to further emphasize the course content.
Help and referral line--The Aging Institute hosts a free call-line that
serves as a community-benefit with no restrictions on geographical
location or insurance affiliation. Callers are connected with a health
professional trained to provide older adults, caregivers, and members
of the community with supportive resources based upon their needs.
These call-line supports have been extended into a physical location at
a nearby community hospital through the Aging Institute at UPMC
McKeesport Resource Center. This center provides a physical location
where individuals from the community can walk in and work with a health
professional to obtain information and connections to community
resources. The space also houses educational sessions and support group
sessions of the Alzheimer's Association.
Website (aging.upmc.com)--The Aging Institute seeks to provide helpful
aging-
related information to health care professionals, students,
researchers, and the community at large and contains a feature where
users can submit aging-related questions to be answered either
virtually or via phone by the call-line staff. A dedicated section
contains resources for caregivers and important information on topics
such as advanced care planning, and social and emotional supports.
Employer/Employee Supports--The Aging Institute and UPMC has partnered
with the United Way of Allegheny County on the United for Caregivers
Initiative designed to stimulate both employer and employee engagement
and to increase the supports available to employees who also serve as
caregivers. American businesses lose $29 billion each year due to
employees' need to care for loved ones, and many caregivers in the
workforce are also members of the ``sandwich generation'' characterized
as providing caregiving needs to both the older adult and younger
children at home. Through this initiative, a survey was created and
disseminated to staff at eight companies to better understand the
distribution of employees that identified themselves as caregivers
within the workforce and to identify needed resources for this group.
Charles F. Reynolds III, M.D.
Director, Aging Institute of UPMC Senior Services and the University of
Pittsburgh
UPMC Endowed Professor in Geriatric Psychiatry
Director, NIMH Center of Excellence in Late-Life Depression Prevention
and Treatment
Director, John A. Hartford Foundation Center of Excellence in Geriatric
Medicine, School of Medicine, University of Pittsburgh
______
Statement Submitted by Michael Ellenbogen
My name is Michael Ellenbogen, and I live in Jamison, PA 18929. I am
living with Alzheimer's and have become a world renowned advocate for
this cause. Below are the issues and actions that need to be addressed
as I see them if we are going to help people and their families deal
with this devastating disease. Implementation of the following will
lead to future savings to government and the public sector. The
government loses so much money today because of this disease, including
many things that are not even being considered under the actual cost of
the disease; i.e., loss of revenue from taxes from the individuals who
no longer work, and the added cost of SSDI and unemployment
supplements. To keep it simple I will make this in bullet form. For
more details look at my other attachment. Keep in mind I have AD so
don't expect perfection.
LACK OF FUNDING is one of the biggest issues we face. If we
were to fund research for Alzheimer's like we fund other major
disease research, we would find ways to slow it down and even a
possible cure.
AWARENESS AND EDUCATION must be increased. Not only do we need
to remove the stigma around this disease, most people including
medical staff do not understand this disease. Although NAPA was
created about 4 years ago there has been no real public
awareness on the disease to better educate the public. One way
to help with this is to also support and push for involvement
for Dementia Friendly America.
MEDICAL PROFESSIONALS: Through my experience with medical staff
and hospitals, I have learned that in order to educate them
about this disease we will need to make training mandatory by
insisting they take CEU's related to dementia training. Without
it I can assure you it will not happen. I have been told this
by high level professionals in the field. In my opinion
hospitals should play a key role in advancing such training.
If we want doctors to actually diagnose people with dementia we
need to ensure that people's rights are not taken away just
because they receive this diagnosis. People lose their drivers'
license in some states. Some judges take away the individual's
right to maintain control of their own finances and most
importantly we do not get the same rights as someone who is
disabled--especially at policy forums like the NAPA Advisory
Council. If NAPA does not provide appropriate accommodations
for people living with dementia, how are we going to set an
example for others to follow?
Given the ever-increasing number of individuals who need to be
diagnosed, gerontologists and geriatricians are critically
important. Unfortunately we have a serious issue because there
are fewer doctors choosing this field due to the lack of
financial reimbursement. Doctors need to spend additional time
with these patients in order to determine a proper diagnosis.
Additional financial incentives are needed for new doctors to
get into this field.
We also need to change the laws so that physicians can oversee,
and be paid for, at-home care so people with dementia can live
in their homes longer. That will lead to a savings to all and
better outcomes for those patients.
MEANINGFUL ENGAGEMENT: We need to find meaningful things to do
for individuals with dementia who no longer can work. The labor
laws prohibit our volunteering. If we were able to volunteer,
it would delay the progression of the disease and we would
function longer before needing care.
RESOURCE DATABASE: Today there is no system in place to give
help to the people who need it when they need it. I believe a
database can be created to do just that. It would help people
get the answers they need to help them take care of their love
one and would delay placement in a residential facility or the
need to go to a hospital emergency room. So many caregivers are
thrown into the fire of taking care of others without any tools
or directions on what to do or where to go.
These are what I consider the critical issues that will lead to the
most success in helping to deal with the escalating challenges our
nation faces from an ever-growing aging population living with
dementia. Thanks.
______
Jewish Association on Aging
200 JHF Drive
Pittsburgh, PA 15217
412-420-4000
Fax 412-521-0932
http://www.jaapgh.org/
July 12, 2016
The Honorable Patrick J. Toomey
Chairman
U.S. Senate Committee on Finance
Subcommittee on Health Care
248 Russell Senate Office Building
Washington, DC 20510
The Honorable Debbie Stabenow
Ranking Member
U.S. Senate Committee on Finance
Subcommittee on Health Care
731 Hart Senate Office Building
Washington, DC 20510
Dear Senators Toomey and Stabenow,
Thank you for allowing me to participate in this critical conversation
on ``Alzheimer's Disease: The Struggle for Families, a Looming Crisis
for Medicare.'' As the President and CEO of the nonprofit Jewish
Association on Aging in Pittsburgh, Pennsylvania, I am acutely aware of
the ravages of this disease and applaud you for bringing this difficult
and important conversation to the forefront.
The impact of Alzheimer's in both quantitative and qualitative terms on
the population we serve cannot be overstated. The illness has a
devastating impact on individuals, their caregivers, families, the
economy, the healthcare system, and the community at large. In 2015,
the Alzheimer's Association reported 270,000 individuals living with
Alzheimer's in the state of Pennsylvania, with the number projected to
increase by 18.5 percent to 320,000 by 2025. On a national level, an
astonishing 1 out of 3 people are affected by this disease--either by a
personal diagnosis or a diagnosis of a family member--in this country.
The mission of the JAA is to honor and enhance the lives of older
adults by providing a continuum of individualized quality care
consistent with Jewish values and tradition. For 110 years we have been
committed to providing long-term care and shelter to the region's
elderly population. Today the JAA offers a full range of comprehensive
care programs to keep seniors active, safe, independent, and connected
to the community through services to seniors of all faiths,
backgrounds, and financial means, including seniors who no longer have
the ability to pay for their own care. In fiscal year 2016, we served
more than 3,000 seniors and their families throughout our continuum and
provided more than $2.8 million in uncompensated care services and
charity.
Since 2012 the JAA has embarked upon a culture change journey
throughout our continuum to enhance the lives of seniors in our
community with greater opportunities for independence and social
engagement. We have several Alzheimer's programs across our continuum,
including 48 skilled nursing and personal care rooms for those
suffering from Alzheimer's and dementia. Our Anathan Club Adult Day
Service has a growing registry of more than 45 individuals and we
recently launched a Nighttime Memory Care Program--the only facility in
the state--that cares for those suffering from Alzheimer's and dementia
during the evening hours when they are the most restless, giving
caregivers a much needed respite. But that just touches the surface as
we project that approximately 80% of the elderly we serve across our
entire continuum of health care services have some form of dementia
with varying degrees of the progression of the illness. Combine these
compelling statistics with the fact that Western Pennsylvania is home
to the second largest population of adults over 65 in the country,
second only to Dade County, Florida, and we need no other motivation
for our community to prepare for the ``silver tsunami'' and the surge
of services that we will need to offer best-in-class care for our
elders, their families and the community at large.
I wanted to take a few moments to tell you what I, our caregivers, and
volunteers encounter every day with our Alzheimer's patients. There's
Marialyce, who walks through the halls with her daughter listening to
an iPod and laughing at silly, sometimes coarse, jokes. There's Edward
who cannot recall his wife's name or her smile, but knows he loves her.
And there's Joel, an esteemed former physician who after his diagnosis
remained uncommunicative for hours but has suddenly found a new passion
for painting in one of our art classes offered at our Adult Day
Service. But for every one of the Marialyces, Edwards and Joels, we do,
sadly, hear of stories of elderly men and women who battle this disease
alone with no support and without even a sliver of the care they need.
We also hear stories of the stress of caregivers, who before they
discovered our services, found themselves alone, abandoned by friends
when their loved one's diagnosis became public. This is a disease that
people are terrified of, and this fear of the unknown leads to
misunderstanding.
We now take it upon ourselves to battle that fear and we hope Congress
will support patients and families affected by Alzheimer's by
supporting the types of services the JAA provides.
At the JAA we have a long-range goal of developing creative and cost-
effective solutions to address the escalating number of older adults
expected to suffer from Alzheimer's and dementia over the next 30
years. Last year, we launched our commitment to be the premiere memory
care specialists in Western Pennsylvania. The JAA has begun training
staff under the Boston, Massachusetts-based Hearthstone Institute's
``I'm Still Here'' comprehensive transformation training program, which
offers innovative memory care techniques through agency-wide culture
change. This is a philosophy of understanding and caring for
individuals with Alzheimer's disease and other dementias through
practical application of a proven methodology. This methodology is
based on the ``I'm Still Here'' approach of Harvard-educated Dr. John
Zeisel that despite the diagnosis of Alzheimer's, those affected and
their families can still find meaning and purpose and have excellent
quality of life for many, many years. The stigma of this disease is so
pervasive in our community it prevents people seeking treatment and
living life to the fullest in spite of the disease. We were compelled
to invest in this groundbreaking socially responsible program that will
educate family members, staff and the public at large to change the
conversation about Alzheimer's as a disease of ``disability'' to one
that emphasizes ``ability.''
Make no mistake. Funding these programs are a challenge for us. But we
believe it is a priority, not only for us but for our community and
nation as a whole.
Alzheimer's disease and the stress it places on patients, families and
society cannot be ignored. As much as we as a small nonprofit in
Western Pennsylvania can do, we need support from our local, state and
national representatives to join us in combating this disease by
funding important programs such as ours and making sure that our
parents and grandparents have all the tools at their disposal so they
don't have to feel like they are suffering alone. Together, we can beat
this disease and its stigmas.
Thank you for your time and dedication.
Sincerely,
Deborah Winn-Horvitz
President and CEO
______
Eli Lilly and Company
Chairman Toomey, Ranking Member Stabenow, and distinguished members of
the subcommittee, thank you for the opportunity to submit written
testimony on the widespread impact of Alzheimer's disease--a condition
that devastates the lives of millions of Americans and their families
each year.
Indeed, the growing impact of Alzheimer's disease has led many
economists, the health-care industry, and communities across the
country, to sound the alarm about this enormous public health threat--
and rightfully so, as the statistics are as staggering as they are
daunting.
For example, there are currently 5.4 million Americans who are living
with Alzheimer's disease. With an aging baby boomer population, coupled
with longer life spans, that number will nearly triple to 13.8 million
by 2050.
Alzheimer's disease will cost Americans $236 billion this year alone--
and this is projected to swell to $1.1 trillion by 2050. But the
disease reaches much further, with an acute burden placed on the
families of patients as well. It is estimated that more than 15 million
caregivers provide an estimated 18.1 billion hours of unpaid care to
patients each year.
On this path, the burden on families will only amplify for generations
to come, and the disease will inflict serious trauma on the American
health care system. Yet, as of now, we currently have no means to
prevent, slow or cure the sixth leading cause of death in the United
States.
Of course, while a cure for the disease remains elusive, over the
course of the last 50 years, scientists--including those at Lilly--have
gained a better understanding of how the disease affects the brain,
which, in turn, has helped improve care for millions of people. And
while the statistics currently related to the disease are sobering,
there remains hope on the horizon.
After decades of research and determination, scientists have moved
closer to innovative new therapies. The possibility of real
breakthroughs are within our grasp. For Lilly's part, we have invested
28 years and $3 billion in research and development on new medicines to
treat this devastating disease.
Just last month, we were excited to announce the launch of the
Alzheimer's Readiness Project. The mission of this project is to
inspire action by fostering a deeper understanding of Alzheimer's, its
evolving science, and the public health crisis it poses.
The project will combine efforts to advocate on behalf of those with
the disease, encourage effective and efficient research and ensure a
regulatory system that reflects the best science and thinking we have.
With this initiative, we will support policies and laws that recognize
innovation and investment that will make a real difference for those
impacted by the disease.
Building off of ongoing partnerships, public education efforts and
events, we will provide a platform where people come together to
discuss solutions and raise awareness of the need for and value of
advancements in the fight against Alzheimer's disease.
Those engaged in the fight against Alzheimer's--from researchers and
physicians to advocates, business leaders and Congress--have set a goal
to prevent or effectively treat Alzheimer's by 2025. The fact is: we
can't meet the goal if we don't act now. Which is why we have ramped up
our efforts and the intensity of our focus.
However, while we continue our research, there are conclusions we have
already drawn that should be considered. For example, we need to
increase emphasis on early detection and diagnosis of Alzheimer's
disease--diagnosis and treatment in the early stages is paramount to
stopping the disease before it does irrevocable damage.
We need to encourage the development of innovative treatments. New
approaches to treating Alzheimer's disease will play a vital role in
preventing and effectively treating Alzheimer's. However, the path from
basic research to new medicines is extremely complex with challenges
along the way. When those new treatments do become available, timely
and appropriate reimbursement decisions will need to be made.
We also need to improve the efficiency of clinical trials. A limiting
factor to advancing research is the challenging process of conducting
clinical trials, including recruitment of participants.
We also would encourage community action strategies. Communities across
the nation are facing the fiscal and societal impact of Alzheimer's.
Implementation of the U.S. National Alzheimer's Plan, as well as
individual state and community-based plans, are critical.
And an often forgotten component is the need to enhance public
awareness and engagement. Significant misperceptions about diagnosis
lead to stigmatization and delayed treatment. Since early detection and
diagnosis is critical, education about the disease is paramount.
We have learned a great deal about Alzheimer's, and a tremendous amount
of effort by many has occurred. But we can do better, and doing better
means laying the groundwork today for the change we want to see in the
future. Of course, scientific breakthroughs often involve years of
research, trials, errors and, sometimes, setbacks. But armed with a
united desire to make life better for people in this country and around
the world, we can--and must--continue the fight.
______
National Association of Psychiatric Health Systems (NAPHS)
900 17th Street, NW, Suite 420
Washington, DC 20006-2507
202-393-6700
https://www.naphs.org/
Statement of Mark Covall, President and CEO
Mr. Chairman and members of the Subcommittee, I want to thank you for
holding this hearing on ``Alzheimer's Disease: The Struggle for
Families, a Looming Crisis for Medicare.''
On behalf of our member organizations, we are pleased to provide our
insights on the need for Medicare modernization that could play a
critical role in improving the lives of millions of Americans who live
with symptoms of a serious mental disorder. We are very concerned about
patients with Alzheimer's disease and would like a Medicare system that
fits the 21st century.
The National Association of Psychiatric Health Systems (NAPHS), which
was founded in 1933, advocates for behavioral health and represents
provider systems that are committed to the delivery of responsive,
accountable, and clinically effective prevention, treatment, and care
for children, adolescents, adults, and older adults with mental and
substance use disorders. NAPHS members are behavioral healthcare
provider organizations that own or manage more than 800 specialty
psychiatric hospitals, general hospital psychiatric and addiction
treatment units and behavioral healthcare divisions, residential
treatment facilities, youth services organizations, and extensive
outpatient networks.
Medicare Modernization Is Necessary
As you know, Medicare was established in 1965 when our healthcare
delivery system and insurance system were very different than today's.
This was before Alzheimer's disease was declared the most common form
of dementia and a substantial public health challenge by the
neurologist Dr. Robert Katzman in a 1976 editorial.
In 1965, most care for people living with mental illnesses was provided
in state mental hospitals. Inpatient stays were counted in months and
years, and much of the care was custodial in nature. So when Congress
was considering establishing the Medicare program, this was the
framework that Congress had to work within in establishing coverage for
mental illnesses. This resulted in a very limited benefit for mental
illnesses under the original Medicare program and a benefit that
provided much less coverage compared to that for other medical
disorders. The benefits for mental illnesses included just inpatient
hospital and outpatient office-based visits, but more importantly these
benefits had limits in duration, scope, and cost-
sharing. For example, outpatient psychiatric care had a 50% cost-
sharing requirement (compared to an 80% cost-sharing requirement for
all other Medicare outpatient services). Also, inpatient psychiatric
care provided in freestanding psychiatric hospitals was limited to 190
days during the lifetime of a Medicare beneficiary.
These discriminatory benefits for mental illnesses remained in place
until 2008 when Congress made the first change in mental health
coverage since 1965. In 2008, Congress changed the cost-sharing for
outpatient mental health services from 50% to 80% (phased in over
several years) to make cost-sharing for mental health just like that
for all other Medicare outpatient services. Yet the Medicare 190-day
lifetime limit for inpatient psychiatric care in freestanding
psychiatric hospitals remains unchanged to this day. (However, the 190-
day lifetime limit does not apply to Medicare beneficiaries receiving
treatment in a psychiatric unit in a general hospital.)
During the 1980s, there was a growth in the number of community private
psychiatric hospitals that provided short-term, acute, inpatient
psychiatric care. At the same time, the downsizing and closing of state
mental hospitals intensified. During this period, diagnosis and
treatment of mental illnesses dramatically improved, and new
medications became available. This resulted in briefer inpatient stays
compared to the longer-term care that was provided in the 1960s when
Medicare was first established. The 1990s saw a decline (more than 30%)
of the overall inpatient psychiatric bed capacity. The decline in beds
was in all settings, including state mental hospitals, community
private psychiatric hospitals, and general hospitals' psychiatric
units. Today, many communities do not have enough inpatient psychiatric
beds--leading to an increase in emergency room visits, longer time
spent in the emergency departments, and patients needing to travel long
distances to receive inpatient psychiatric care.
In 2008, Congress passed landmark legislation called the Paul Wellstone
and Pete Domenici Mental Health Parity and Addiction Equity Act
(MHPEA). This legislation changed the landscape of coverage for mental
and addictive disorders by requiring private commercial health plans
that offered coverage for mental health and addictive services to
provide that coverage on par with all other medical disorders. However,
the major governmental health insurance program for seniors and the
disabled--the Medicare program--still has discriminatory coverage for
inpatient psychiatric care. It is long past due to bring the Medicare
program up to the standard of all other insurance plans and to--once
and for all--eliminate Medicare's 190-day lifetime limit for inpatient
psychiatric care delivered in community private psychiatric hospitals.
The need to get rid of this long-standing discriminatory provision for
inpatient psychiatric care is not just about fairness and equity, but
it is about real people who are dealing with debilitating Alzheimer's
disease, who so desperately need this care.
Who Are These Medicare Beneficiaries? Why Is Elimination of the 190-Day
Lifetime Limit Critical?
The Medicare Payment Advisory Commission \1\ has outlined key
characteristics of Medicare beneficiaries who receive inpatient
psychiatric care.
---------------------------------------------------------------------------
\1\ Medicare Payment Advisory Commission (MedPAC). ``Inpatient
psychiatric care in Medicare: Trends and issues.'' Chapter 6 in Report
to Congress. June 2010. See http://www.medpac.gov/chapters/
Jun10_Ch06.pdf.
Unlike beneficiaries seen in other types of hospitals, most Medicare
beneficiaries treated in inpatient psychiatric facilities (known as
---------------------------------------------------------------------------
``IPFs'') qualify for Medicare because of disability.
As baby boomers have aged, the number of IPF beneficiaries between the
ages of 45 and 64 has grown, rising 18% between 2002 and 2009.
More than a quarter of Medicare beneficiaries (29%) have a cognitive/
mental impairment.\2\
---------------------------------------------------------------------------
\2\ Henry J. Kaiser Family Foundation. ``FACT SHEET: Medicare at a
Glance,'' #1066-12, January 2010. www.kff.org/medicaid/upload/
4091_06.pdf.
Medicare is a critical safety net for those who have long-term mental
disabilities, but who have the ability to participate in the community
---------------------------------------------------------------------------
throughout their lives given adequate support.
These demographics provide a picture of Medicare beneficiaries who have
symptoms of a serious mental illnesses (such as Alzheimer's disease)
and who are living with these disorders. Alzheimer's is a chronic
disease and will require ongoing treatment and care over lifetimes,
including hospitalization when in crisis.
Care for these sickest patients continues to have unnecessary
complexity and barriers that don't exist for other complex or chronic
illnesses. These Medicare beneficiaries can easily exceed the 190-day
lifetime limit because the chronicity of their illness.
The 190-day lifetime limit restricts access to critical, life-saving
treatment just when it is most needed.
The 190-day lifetime limit also impacts the continuity of care for
people living with Alzheimer's disease. Just when they need crisis
stabilization in a hospital setting, they may not be able to go to the
hospital and doctors who have been treating them for many years because
of the arbitrary lifetime limit.
Legislation has been introduced in previous Congresses to eliminate the
190-day lifetime limit, and it has been both bipartisan and supported
by broad coalition of national organizations.
In closing, the science and expertise about mental illnesses has grown
exponentially in recent years. These illnesses can be diagnosed and
treated effectively. People can recover their memory. What we need to
do as a society is to give people the hope and help they deserve--just
as we would for someone who has a heart condition or cancer.
Eliminating the 190-day lifetime limit will equalize Medicare mental
health coverage with private health insurance coverage, expand
beneficiary choice, increase access for the most seriously ill, improve
continuity of care, and create a more cost-effective Medicare program.
Mr. Chairman, again, thank you for holding this very important hearing.
We look forward to working with you and the entire Subcommittee to
ensure that Medicare beneficiaries living with Alzheimer's disease are
able to have coverage that is comparable to what is available for all
other Medicare beneficiaries.
______
National PACE Association
675 N. Washington Street, Suite 300
Alexandria, VA 22314
Phone: 703-535-1565
Fax: 703-535-1566
http://www.npaonline.org/
The Program of All-Inclusive Care for the Elderly (PACE) is a proven
care model that provides high-quality, community-based, integrated care
to some of our nation's frailest, most vulnerable citizens--those over
the age of 55 who need a nursing home level of care but seek to remain
in their own homes. Studies show that people receiving care from PACE
organizations live longer, are in better health, have fewer
hospitalizations and spend more time living in their homes than those
receiving care through other programs. PACE is an evidence-based
program in which nearly half of the people who receive care and support
have been diagnosed with dementia. As described in the chart below,
PACE programs have a long history of serving patients with dementia,
along with additional complex chronic conditions.
Today, it is possible to enroll only those individuals who meet their
state's eligibility criteria for nursing home care. Once enrolled, PACE
programs provide and are responsible for all care needed by enrollees,
this includes long-term services and supports and acute services. There
are 119 PACE programs operating in 31 states, serving approximately
40,000 participants--and this number continues to grow each year.
As a result of bipartisan legislation passed by Congress and signed
into law by the President last year, the PACE Innovation Act of 2015,
PACE has additional opportunities to serve those with intellectual
disabilities, dementia, and Alzheimer's. The Centers for Medicare and
Medicaid Services (CMS) now has additional authority under the ACT to
pilot the PACE model with new populations, including people younger
than 55 and those with complex care and support needs who do not yet
meet their state Medicaid agency's criteria for needing a nursing home
level of care. These pilots have the potential to expand the
availability of PACE and PACE-like services to a greater number of
people with Alzheimer's, their families and their friends, thereby
providing them access to a care option that addresses the serious gaps
in our current health and long term care delivery systems. The pilots
would enable PACE organizations to offer high-quality, fully-integrated
care that allows people with Alzheimer's who do not yet meet
traditional PACE eligibility criteria to maintain their optimal health,
receive much-needed services, and live independently in the community.
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
Not far from where this committee meets, the lives of two individuals
and their families provide compelling examples of the difference access
to a PACE program could make through a pilot program.
Serving People Under the Age of 55: Jim G.
Jim G. is a 54 year old Virginia resident who was diagnosed with early-
onset Alzheimer's disease. Although Jim was initially enrolled in
clinical trials to combat his illness, he recently ceased all treatment
as his memory--and his health--deteriorated. Jim tried to enroll in the
local PACE program, but was unable to because he was not yet 55 and
therefore did not meet the program's current age eligibility
requirements.
Jim was hospitalized in 2014 for a lung infection caused by ``silent
aspiration,'' which occurs when the swallowing function is weakened by
Alzheimer's. A once vibrant athlete, Jim lost almost 40 lbs. Initially,
Jim stayed home alone during the day, where he was isolated and
struggled with activities of daily living, such as personal grooming,
household chores, and child care. Karen, his caregiver, struggled to
care for Jim and tend to her school-aged children, while also holding
down a full time job, but eventually had to quit her job to care for
him full time. Unfortunately, Karen discovered that his needs were more
than she could handle. Following a psychotic break and a week as a
psychiatric inpatient, Jim was permanently placed in a memory care unit
near their home. Karen had to use ``crowd-sourcing'' to raise funds for
Jim's treatment.
This heartbreaking situation might have been avoided had Jim been able
to enroll in PACE. Jim could have received day-time support that would
allow him to continue to live at home with his family. He could have
received therapies to help him stay physically strong, and primary care
to help avoid silent aspiration and other health complications. PACE
has significant experience with dementia, and might have been able to
avoid or better manage his psychiatric deterioration. And Karen and her
family would have received much needed respite services, emotional and
social support, and peace of mind, perhaps helping her maintain her
employment.
Serving People At-Risk of Nursing Home Placement: Terry B.
In testimony before the District of Columbia's Council, Terry B.
described her work as an enrollment coordinator at a PACE program as
``the most rewarding job I ever had in my life. I was able to help
older adults and their families find a solution to some very
heartbreaking issues and could substantially see the huge difference
this program made in their lives--from being totally at the bottom of
despair to living a full life and thriving in their final years.''
At the age of 56, Terry was diagnosed with younger onset dementia, and
has now reached the point where she can no longer work. She recently
completed her term as a member of the national Alzheimer's Association
Early-Stage Advisory Group, helping the Association provide the most
appropriate services for people living with early-stage dementia, raise
awareness about early-stage issues and advocate with legislators to
increase funding for research and support programs.
Terry observed that she is ``not yet ready nor qualified to need the
PACE program, but when I do I know they will be there for me and my
family.'' Through a pilot program, Terry and her family would be able
to access the PACE program when they determine they need its support
and integrated care rather than waiting until Terry meets the state's
nursing home level of care criteria. This earlier access to PACE can
support Terry's continued quality of life, in a home setting that also
strengthens the caregivers in her life.
Providing Access to PACE for People With Alzheimer's
The pilots made possible by the PACE Innovation Act of 2015 would help
Jim, Terry and others like them. These pilots would allow CMS to test
and adapt the PACE model for individuals under the age of 55 and those
who are not yet in need of a nursing home level of care but whose care
delivery systems and supports are being strained as they strive to
maintain their quality of life.
But providing care to individuals with dementia is nothing new.
Specifically, the following are benefits that PACE has, and will
continue to provide, to people with Alzheimer's, their families, and
policymakers seeking to improve their care options:
Access to team based, disability competent care for an
underserved, high cost population.
Improved care coordination with timely and accessible primary
care reducing unnecessary emergency, inpatient and long term care
utilization.
Reduced nursing home utilization enabling nursing home eligible
individuals to live independently in the community.
Competent, consistent and quality attendant care services for
activities of daily living.
Social network of care with innovative physical and virtual day
programs to enhance independence and employability.
Extensive use of adapted technologies--computing, telehealth,
social networking, environmental controls, mobility--to increase
independence, provide enhanced abilities at reduced cost.
Significant savings to Medicaid and Medicare--payments to PACE
programs are less than Medicaid would pay for a comparable population
in its other programs and PACE provides savings to the Medicare
program.
Relocation of individuals from nursing homes into community
settings by partnering with state and local housing organizations to
fund development of accessible, affordable and safe housing.
Below is an example of a participant who has benefitted from the PACE
model of care.
Serving People With Dementia: Anna M.
Anna M., or ``Gramma'' as she was affectionately called, was a 103-
year-old Virginia resident who joined PACE once community adult-day
care support alone was insufficient to address her needs. She suffered
from dementia, experienced a steady cognitive and functional decline,
and could no longer converse in English, but rather spoke in her native
Italian.
When she joined PACE, Gramma was very agitated and combative, often
hitting or spitting at PACE staff and, to a lesser degree, other
participants. She was very territorial over her space and her
possessions and rather inflexible in her routines. At the very
beginning, the only activity she would engage in when she began with
PACE was manically cutting up newspapers and magazines.
In PACE, Gramma worked closely with the entire interdisciplinary team
(IDT) of PACE professionals, particularly with dementia experts to help
her transition to PACE. The IDT quickly realized that she thrived with
routines, familiar environments, and caregivers. So, Gramma was set up
with a very consistent routine, which she followed daily with regular
and consistent staff.
With some support, Gramma began to participate in a dozen different
activities that she enjoyed and looked towards each day. The PACE
program was able to transition her away from using scissors to more
benign tasks such as folding laundry and sorting cards. Gramma expanded
beyond her initial sphere of activity and there were even times when
she would join in during group activities and interact with her peers
at the PACE center. Beyond group activities, the PACE program developed
tailored strategies to support Gramma. They used a colored plate during
meal-time to increase intake (low vision is often a problem with
dementia and poor visual contrast of, for example, white food on a
white plate leads to decreased intake because the person can't see the
food vs. white food on a blue plate). They would also sweeten her food
with strawberry syrup because people with dementia lose their sense of
taste and eventually only taste sweet foods, not to mention Gramma
loved the color red.
The PACE staff were keen to keep the overall distractions and noise
level low, provided appropriate activities, and provided direct one-on-
one care. The PACE staff ensured that she was actively engaged in a
meaningful activity to reduce the risk of falls and minimize agitation.
Additionally, the PACE team provided ample training and education. They
hosted a caregiver training series focusing on caring for loved ones
with dementia.
By working with Gramma and her caregivers, her family noted a number of
improvements in her quality of life, including:
Decreased agitation and aggression and overall improved mood;
Increased participation in a large variety of activities;
Increased intake;
Decreased caregiver burden and stress; and
Increased caregiver competence.
Her family was happy that after joining PACE Gramma began eating dinner
again with the family. She began sleeping at night and she was again
enjoying her family's company. Gramma passed away in her home,
surrounded by her family. PACE supported her and her family throughout
the end of her life.
Without PACE, Gramma's family said, they simply would not have been
able to achieve so much.
Congress can advance a proven, cost-effective care model that will help
achieve the goals of better care coordination, and higher quality of
life by supporting the expansion of PACE programs both through new
pilots as well through additional legislative and regulatory
opportunities. In particular, updating the 2006 regulation, currently
under review by the OMB, would greatly improve access to PACE with the
potential to support more and faster growth.
Thank you for the opportunity to provide this testimony. We would be
happy to provide any additional information that would be of use to the
committee as it considers how to support the care needs of people with
Alzheimer's and their families. Please contact Peter Fitzgerald,
Executive Vice President, Policy and Strategy at the National PACE
Association with any questions or if we can be of assistance. Mr.
Fitzgerald can be reached at 703-535-1519 or [email protected].
______
Statement Submitted by Regina A. Shih \1\
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\1\ The opinions and conclusions expressed in this testimony are
the author's alone and should not be interpreted as representing those
of the RAND Corporation or any of the sponsors of its research.
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The RAND Corporation \2\
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\2\ The RAND Corporation is a research organization that develops
solutions to public policy challenges to help make communities
throughout the world safer and more secure, healthier, and more
prosperous. RAND is nonprofit, nonpartisan, and committed to the public
interest.
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http://www.rand.org/
In 2013, my colleagues at RAND published an estimate of the cost of
dementia to millions of families and the United States more broadly,
reporting it to be the most costly condition in America.\3\ The team
found that the vast majority of dementia costs are attributable to
long-term services and supports (LTSS), rather than medical care. The
number of Americans who will need LTSS is expected to double by the
year 2050. As the nation's population grows grayer, the costs of
dementia LTSS will only soar.
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\3\ Michael D. Hurd, Paco Martorell, Adeline Delavande, Kathleen J.
Mullen, and Kenneth M. Langa, ``Monetary Costs of Dementia in the
United States,'' New England Journal of Medicine, Vol. 369, No. 14,
2013, pp. 1326-1334.
Following RAND's landmark research estimating the extraordinary
monetary costs of dementia, RAND researchers challenged themselves to
answer the question: ``What can be done about this?'' I led a team that
interviewed key representatives of national, state, and local
stakeholder groups. Their views, combined with research on existing
national dementia and long-term care reports, were evaluated to
identify policy options that have the greatest impact on improving
dementia LTSS. This policy evaluation was the first to examine
promising LTSS policy solutions specifically for those living with
Alzheimer's and other related dementias (referred to hereafter as
dementia) and culminated in the RAND report, Improving Dementia Long-
Term Care: A Policy Blueprint.\4\
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\4\ Regina A. Shih, Thomas W. Concannon, Jodi L. Liu, and Esther M.
Friedman, Improving Dementia Long-Term Care: A Policy Blueprint, Santa
Monica, CA: RAND Corporation, RR-597, 2014.
To inform today's subcommittee hearing on the impact of Alzheimer's
disease on families and Medicare, I present the following statement for
the record that integrates key findings from RAND's dementia LTSS
policy blueprint and other relevant research publications.
Costs of Dementia
In a study published in the New England Journal of Medicine, my
RAND colleagues reported that the costs of care for seniors in the
United States with dementia are expected to more than double by
2040.\5\ In that study, the RAND team estimated that about 9.1 million
people ages 70 and older will be suffering from Alzheimer's disease or
another dementia by 2040. That study estimated that in 2010, Americans
spent $109 billion for dementia care purchased in the marketplace, like
skilled nursing facilities. When informal care provided by family
members or others outside of institutional settings is factored in, the
total cost of caring for individuals with dementia in 2010 grew to
between $159 and $215 billion.
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\5\ Hurd et al., 2013.
As the U.S. population ages in the coming decades, we can expect
those costs to continue to escalate. Even if dementia's prevalence
stays at the current rate and the cost of care does not rise, RAND's
research showed that by 2040, total costs will have soared to as high
as $511 billion.\6\ The vast majority of costs associated with dementia
among those ages 70 or older are attributable to LTSS, rather than
medical services. Unfortunately, the LTSS system has typically not been
well aligned with the needs of persons with dementia.
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\6\ Hurd et al., 2013.
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The Current State of Dementia Long-Term Services and Supports
The costs of LTSS for persons with dementia are high, and they
increase sharply as cognitive impairment worsens. LTSS can be provided
by formal or informal caregivers. According to RAND estimates, the
expense of in-home assistance provided by families accounts for
approximately 50 percent of the total costs of dementia care.\7\
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\7\ Hurd et al., 2013.
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The Burden on Family Caregivers is Unsustainable
Informal care, which we refer to as family care, is unpaid care
that usually consists of assistance from a relative, partner, friend,
or neighbor. The vast majority of dementia LTSS are provided by family
caregivers, as much as 80 percent by one estimate.\8\ More than 15
million Americans currently provide care to family members or friends
with dementia.\9\ These family caregivers shoulder a heavy burden;
nearly 40 percent reported quitting jobs or reducing work hours to care
for a family member or friend with dementia. Many of these caregivers
also experience negative physical and mental health effects. At the
same time, family caregivers often report being inadequately educated
about the trajectory of dementia and the scope of available respite/
adult day care resources that could alleviate the stressors of
providing care, even 1 year after a dementia diagnosis has been
made.\10\
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\8\ L. Harris-Kojetin, M. Sengupta, E. Park-Lee, and R. Valverde,
Long-Term Care Services in the United States: 2013 Overview,
Hyattsville, MD: National Center for Health Statistics, 2013.
\9\ Alzheimer's Association, ``2013 Alzheimer's Disease Facts and
Figures,'' Alzheimer's and Dementia: the Journal of the Alzheimer's
Association, Vol. 9, No. 2, 2013, pp. 208-245.
\10\ M.L. Laakkonen, Raivio, M.M., Eloniemi-Sulkava, U., Tilvis,
R.S., and Pitkala, K.H., ``Disclosure of Dementia Diagnosis and the
Need for Advance Care Planning in Individuals With Alzheimer's
Disease,'' Journal of the American Geriatrics Society, Vol. 56, No. 11,
2008, pp. 2156-2157; and Allison K. Gibson and Keith A. Anderson,
``Difficult Diagnoses: Family Caregivers' Experiences During and
Following the Diagnostic Process for Dementia,'' American Journal of
Alzheimer's Disease and Other Dementias, Vol. 26, No. 3, 2011, pp. 212-
217.
Demographic trends suggest that the current heavy reliance on
family caregiving is unsustainable. Our RAND research has shown that
compared to cognitively normal adults, persons living with dementia or
cognitive impairment are more likely to receive care from
daughters.\11\ This is alarming on several fronts: family sizes are
shrinking, the number of women in the labor force is growing,\12\ and
women are more likely than men to suffer negative employment and health
consequences associated with family caregiving for dementia.\13\ As the
median age of the U.S. population continues to trend upward, there will
be a growing imbalance between the number of people needing care and
family caregivers available to deliver it.\14\ These changes suggest
that in the future, more people living with dementia will need to turn
to formal care in lieu of or in support of family caregiving.
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\11\ Esther M. Friedman, Regina A. Shih, Kenneth M. Langa, and
Michael D. Hurd, ``U.S. Prevalence and Predictors of Informal
Caregiving for Dementia,'' Health Affairs, Vol. 34, No. 10, 2015, p.
1637-1641.
\12\ Jonathan Vespa, Jamie M. Lewis, and Rose M. Kreider,
``America's Families and Living Arrangements: 2012,'' in Current
Population Reports 2013, Washington, DC: U.S. Census Bureau, 2013.
\13\ Family Caregiver Alliance National Center on Caregiving,
``Fact Sheet: Caregiver's Guide to Understanding Dementia Behaviors,''
web page, 2016; and Erin DeFries Bouldin and Elena Andresen, Caregiving
Across the United States: Caregivers of Persons With Alzheimer's
Disease or Dementia in 8 States and the District of Columbia, Data From
the 2009 and 2010 Behavioral Risk Factor Surveillance System, McLean,
VA: Alzheimer's Association, 2014.
\14\ Donald Redfoot, Lynn Feinberg, and Ari Houser, ``The Aging of
the Baby Boom and the Growing Care Gap: A Look at Future Declines in
the Availability of Family Caregivers,'' in Insight on the Issues,
Washington, DC: A.P.P. Institute, 2013.
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Public Programs Cover Some Costs, but the Middle Class is Most
Vulnerable
With respect to formal LTSS, Medicaid is the largest payer.\15\
Medicaid can cover skilled nursing facility care and paid care provided
in the home or community, as well as assistance with personal care. In
contrast, Medicare covers only hospice costs and a portion of short-
stay, post-acute care for Medicare beneficiaries. Medicaid eligibility
rules in many states require that individuals have assets no greater
than $2,000, and this restriction results in significant gaps in risk
protection from LTSS costs. People with adequate resources who plan
early enough turn to private long-term care (LTC) insurance or out-of-
pocket resources for financing, while lower-income individuals are
covered through Medicaid. The middle class is at greatest risk for
significant and possibly catastrophic LTSS costs, given the lack of
readily available resources to finance their dementia LTSS.
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\15\ Carol V. O'Shaughnessy, The Basics: National Spending for
Long-Term Services and Supports (LTSS) 2013, Washington, DC: National
Health Policy Forum at George Washington University, 2013.
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Medicare Post-Acute and Hospice Benefits Are Limited and Differentially
Affect Those With Dementia
Persons with dementia would benefit from the expansion of several
Medicare eligibility requirements. First, traditional Medicare covers
skilled nursing facility care, if needed after a hospital stay, for
patients who are hospitalized for at least 3 consecutive days. However,
patients who are placed under observation status are not considered
hospitalized.\16\ Therefore, individuals who have been hospitalized for
3 consecutive days but under observation for some or all of their
hospital stay would not meet the 3-day inpatient hospitalization
requirement for subsequent skilled nursing facility coverage, thus
incurring significant out-of-pocket financial costs. Additionally, some
individuals who require intensive health and therapeutic services after
a hospitalization may prefer to receive care in their community rather
than at a skilled nursing facility. Adult day services are emerging as
a key community-based provider of short-term rehabilitation and
transitional care following hospital discharge and could provide some
specialized services for people living with dementia who have been
discharged from a hospital stay, instead of a skilled nursing facility.
Under current Medicare policy, however, such community-based care is
not reimbursable.
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\16\ Centers for Medicare and Medicaid Services, ``Chapter 8:
Coverage of Extended Care (SNF) Services Under Hospital Insurance,'' in
Medicare Benefit Policy Manual, Baltimore, MD: Centers for Medicare and
Medicaid Services, 2014.
Second, Medicare home health benefits currently require a
beneficiary to be deemed ``homebound'' in order to access covered in-
home care. Yet, while persons living with dementia may not always have
physical limitations that make them homebound, their mental and other
functional limitations may still require the same level of in-home
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care.
Third, the lifetime course of dementia symptoms can be
characterized by long periods of stability punctuated by steep declines
and occasional recovery. The average length of stay for beneficiaries
with dementia who are receiving Medicare hospice care in skilled
nursing facilities has increased over time,\17\ and the per-person
hospice care payments across all beneficiaries with dementia were 10
times higher than average per-person hospice payments for other
Medicare beneficiaries.\18\ At the same time, the ability of physicians
to predict 6-month mortality for persons with dementia is constrained
by great variation in decline and recovery.\19\ Medicare currently
requires a 6-month prognosis in order to qualify for hospice care, but
this may not be easy to determine for those in the late stages of
dementia.
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\17\ Susan C. Miller, Julie C. Lima, and Susan L. Mitchell,
``Hospice Care for Persons with Dementia: The Growth of Access in U.S.
Nursing Homes,'' American Journal of Alzheimer's Disease and Other
Dementias, Vol. 25, No. 8, December 2010, pp. 666-673; Centers for
Medicare and Medicaid Services, 2014.
\18\ Julie Bynum, tabulations based on data from the Medicare
Current Beneficiary Survey for 2008, Dartmouth Institute for Health
Policy and Clinical Care, Dartmouth Medical School, November 2011.
\19\ Susan L. Mitchell, Susan C. Miller, Joan M. Teno, Roger B.
Davis, and Michele L. Shaffer, ``The Advanced Dementia Prognostic Tool:
a Risk Score to Estimate Survival in Nursing Home Residents with
Advanced Dementia,'' Journal of Pain and Symptom Management, Vol. 40,
No. 5, November 2010, pp. 639-651; Susan L. Mitchell, Joan M. Teno,
Susan C. Miller, and Vincent Mor, ``A National Study of the Location of
Death for Older Persons With Dementia,'' Journal of the American
Geriatrics Society, Vol. 53, No. 2, 2005, pp. 299-305; and Greg A.
Sachs, Joseph W. Shega, and Deon Cox-Hayley, ``Barriers to Excellent
End-of-life Care for Patients with Dementia,'' Journal of General
Internal Medicine, Vol. 19, No. 10, 2004, pp. 1057-1063.
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Policy Options for LTSS and Dementia
Given the mounting toll dementia will place on our nation's
families, LTSS, and health-care systems, RAND interviewed 40
stakeholders across seven groups (patients/public, providers,
purchasers, payers, policymakers, product makers, and principal
investigators), representing multiple perspectives on dementia care,
research, and policy, to identify potential policy options. The RAND
dementia blueprint reports the independent evaluation of the policy
options across 14 feasibility and impact criteria, ultimately arriving
at 25 high-impact policy options. For the purposes of this hearing, I
discuss the high-impact policy options in that report related to
Medicare and those that could aid family caregivers.
Support Family Caregivers
Family caregivers face a host of challenges caring for loved ones,
and the federal government could implement new, or improve existing
programs to assist these caregivers.
One option could be to offer business and individual tax incentives
to provide family caregiving. This approach could include tax breaks
for individuals who are family caregivers, which would provide some
compensation for their caregiving time. The incentives could also
target businesses to promote provision of adult day care centers on
site, expansion of dependent care accounts to incorporate more LTSS
costs, and more paid time off and/or flexible work hours to allow for
more and varied caregiving.
Another option would be to expand financial compensation programs
to family caregivers. The RAND dementia blueprint report recommends
increasing the availability of compensation programs for lost wages and
caregiving work (e.g., through Medicaid programs) and expanding these
programs to all states. Such programs are often referred to as
``participant-directed services'' or ``cash and counseling.'' While
some persons with dementia may already have access to these programs,
they are not available in all states and are restricted to persons with
limited assets (primarily those on Medicaid). This solution would
expand access to such programs to subsets of the population who
currently cannot access them and increase awareness of existing
compensation programs among those who are already eligible.
A third option is to provide dementia-specific training and
information about resources to family caregivers and volunteer groups.
Interventions aimed at providing dementia-specific education, skill
training, support, and counseling to family caregivers have
successfully deferred skilled nursing facility placement for persons
with dementia and decreased depression and distress among
caregivers.\20\ Additional training and information could be provided
to volunteer groups with access to persons with dementia and family
caregivers, so that these groups may be better informed about the needs
of persons with dementia. We also recommend wide dissemination of
educational materials about providing care, hands-on training, and
availability of formal LTSS resources available to family caregivers
(e.g., respite care, community services) that may help make caregiving
easier and more manageable. Combined, these policy recommendations are
likely to reduce caregiver burden and potentially lessen or delay
individuals' reliance on formal care often paid for by the federal and
state governments. The legal and political feasibility of the option to
expand financial compensation programs is likely to be higher than the
option to provide tax incentives because the latter involves high costs
to the federal government and businesses. Ideally, all three options
would be packaged together, so that policies to provide monetary
incentives to provide family care would be coupled with LTSS and
dementia-specific LTSS training for family caregivers.
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\20\ M.S. Mittelman and S.J. Bartels, ``Translating Research Into
Practice: Case Study of a
Community-Based Dementia Caregiver Intervention,'' Health Affairs, Vol.
33, No. 4, 2014, pp. 587-595; K. Hepburn, M. Lewis, J. Tornatore, C.W.
Sherman, and K.L. Bremer, ``The Savvy Caregiver Program: The
Demonstrated Effectiveness of a Transportable Dementia Caregiver
Psychoeducation Program,'' Journal of Gerontological Nursing, Vol. 33,
No. 6, 2007, pp. 30-36; and S. Belle, L. Burgio, R. Burns, D. Coon,
S.J. Czaja, D. Gallagher-Thompson, L.N. Gitlin, J. Klinger, K.M.
Koepke, C.C. Lee, J. Martindale-Adams, L. Nichols, R. Schulz, S. Stahl,
A. Stevens, L. Winter, S. Zhang, and Resources for Enhancing
Alzheimer's Caregiver Health II Investigators, ``Resources for
Enhancing Alzheimer's Caregiver Health (REACH) II Investigators:
Enhancing the Quality of Life of Dementia Caregivers From Different
Ethnic or Racial Groups: A Randomized, Controlled Trial,'' Annals of
Internal Medicine, Vol. 145, No. 10, 2006, pp. 727-738.
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A Comprehensive National Financing Solution Is Needed for LTSS
As already discussed, the costs posed by dementia are only going to
increase in the coming years, and many families are ill prepared to
face those costs. A broad LTC insurance solution is needed to address
high out-of-pocket costs for LTSS and the high proportion of older
adults afflicted with dementia, and the federal government could help
craft a national solution.
One option would be to create a national, voluntary opt-out LTC
insurance program through a public-private partnership, which would
build upon the structure of the private health insurance system, while
having a public wraparound of secondary insurance. Insurance provided
by the private LTC insurance industry allows for market competition and
consumer choice. Making the program opt-out would encourage greater
uptake, which in turn could encourage more private insurers to enter
the LTC insurance market. A large insurance pool would limit exposure
to the insurers and also improve efficiency by reducing overhead and
underwriting risk.
Another option would be to adopt a national single-payer LTC
insurance system that is financed through taxes and provides coverage
for all citizens. The LTSS benefit could be a basic package or a
comprehensive coverage built into Medicare or a new program. While LTC
insurance coverage would be funded through the government, services
could be provided by private organizations or other contractors.
While both of these options would increase LTSS access and
utilization, they also face challenges. Such programs would require
substantial implementation costs, creating a significant practical as
well as political barrier. I note that both the Commission on Long-Term
Care's 2013 report and the alternative report by the dissenting members
agreed that an element of public financing is needed, but they
disagreed on the extent to which a social LTSS insurance system should
be publicly financed.\21\ Future quantitative analyses that examine
different financing options for public programs, tax credits for saving
for LTSS costs, and private LTC insurance will inform the development
of a comprehensive LTC insurance program. This is especially critical
given the expected rise in dementia prevalence and associated high
costs of care to the federal government and families.
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\21\ Commission on Long-Term Care, Report to the Congress,
Washington, DC: U.S. General Accounting Office, September 30, 2013; and
Long-Term Care Commission, A Comprehensive Approach to Long-Term
Services and Supports, Washington, DC: U.S. General Accounting Office,
September 23, 2013.
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Refine Medicare Post-Acute Care and Hospice Benefits
Medicare post-acute and hospice benefits are limited, and persons
with dementia would benefit from the expansion of eligibility
requirements. The following options could be considered.
Refine the three-day hospital stay requirement for skilled
nursing facility care. This would extend coverage for skilled nursing
facility care by allowing outpatient observation days to count toward
the three-day inpatient hospitalization stay required before skilled
nursing facility care is covered.
Allow payments for adult day care instead of a skilled
nursing facility. For beneficiaries who prefer to go home after a
hospitalization rather than to a skilled nursing facility, Medicare
could cover some specialized adult day care services at potentially
lower cost than through a skilled nursing facility.
Expand eligibility of hospice benefits to include dementia
as a qualifying event. This change would mean that persons with
dementia could receive hospice care before they are diagnosed as
terminally ill with a life expectancy of six months or less. Doing so
would give persons with dementia more options for palliative care.
Reconsider the homebound requirement for receiving home
health services under Medicare. Expanding eligibility to consider
persons with dementia as homebound would allow persons with dementia to
have access to in-home care and would help them remain at home longer.
Expansion of these Medicare eligibility criteria for benefits and
qualifying events would likely increase LTSS availability and use.
Patient safety and patient and caregiver satisfaction would also likely
increase with more access to post-acute care. While these
recommendations would increase Medicare costs, they may be offset by
savings to Medicaid and out-of-pocket spending for potential future
LTSS, such as institutionalized care. Future cost analyses could
further quantify the implications of these policy options on costs to
Medicare.
I appreciate the opportunity to provide a statement for the record
for today's hearing. I would be happy to answer any follow-up questions
that may arise in response to this statement.
______
University of Pittsburgh Alzheimer Disease Research Center (ADRC)
UPMC Montefiore, 4 West
200 Lothrop Street
Pittsburgh, PA 15213-2582
412-692-2700
Fax: 412-692-2710
July 11, 2016
The Honorable Patrick J. Toomey
Chairman
U.S. Senate Committee on Finance
Subcommittee on Health Care
248 Russell Senate Office Building
Washington, DC 20510
The Honorable Debbie Stabenow
Ranking Member
U.S. Senate Committee on Finance
Subcommittee on Health Care
731 Hart Senate Office Building
Washington, DC 20510
Dear Chairman Toomey and Ranking Member Stabenow,
On behalf of our colleagues at the University of Pittsburgh Alzheimer
Disease Research Center (ADRC), we are pleased to submit this written
testimony for consideration at this week's aptly titled hearing,
``Alzheimer's Disease: The Struggle for Families, a Looming Crisis for
Medicare.''
As researchers at one of the nation's 31 federally funded Alzheimer's
Disease Centers we interact regularly with scientists from around the
globe who share our passion and commitment to improving our
understanding of and discovering new treatments for Alzheimer's disease
and related disorders (ADRD). Indeed, we are drafting this statement of
record for your subcommittee just as we are preparing ourselves to
present our latest research at the upcoming Alzheimer's Association
International Conference (Toronto, CA, July 24-28). Meeting with and
hearing from other leading experts from around the world at scientific
conferences like this is always a highly energizing experience. These
meetings give us fresh perspectives on the most innovative ideas for
advancing the diagnosis and treatment of Alzheimer's disease, which in
turn, fuels our drive to move forward our own research projects as well
as to support and facilitate the research of other scientists through
our leadership roles at the ADRC.
Yet, following each of these inspiring meetings, we return to western
Pennsylvania and are quickly reminded of the sobering realities of the
current state of clinical care for individuals with dementia. While we
know firsthand that scientific progress is accelerating and offers
great hope for future generations of patients, we are faced with
frustration as we currently have so few treatment options for patients
and families who are in the throes of the disease today. Patients and
families come to Centers like ours seeking the most cutting edge
diagnostic procedures and treatments that experts have to offer. At the
time of an initial diagnosis of Alzheimer's disease or a related
disorder, we see patients and their family members struggling to
understand the illness and its implications for their futures. More
than anything, they want to know what can be done to slow the course of
the disease. Sadly, the answer to that question has been unchanged in
13 years (when the Food and Drug Administration last approved a new
treatment for AD); and for all practical matters, the answer has been
the same since each of us encountered our first patient in clinical
practice, ``We will do everything we can to manage the symptoms of this
disease, but there is no cure available.''
While the standard of practice for treating Alzheimer's disease has
been unchanged in years, what has changed dramatically are the record
numbers of individuals affected by the disease and the soaring costs of
caring for them. Estimates from the Alzheimer's Association indicate
that more than 5 million Americans are currently living with
Alzheimer's disease or a related dementia, making these conditions as
common as heart failure, which the CDC estimates to affect 5.7 million
Americans. However, dementia disorders are especially costly (Kelley et
al., 2015). While the annual costs of heart failure are estimated at
$32 billion (including healthcare services, medications and lost
productivity), the care of persons with dementia is projected to cost
the nation a staggering $236 billion in 2016. The nature of and payers
for these costs are varied, but there is no question that Medicare
related expenses are a major contributor to the overall economic impact
of the disease on our society. Even other diseases become more costly
to treat on a backdrop of dementia. For example, recent reports
indicate that when an individual with dementia is hospitalized for an
acute illness, they are more likely to have complications which, when
present, cause dementia patients to incur double the costs for a
hospitalization as compared to patients without dementia who are
hospitalized for the same condition (Bail et al., 2014).
The high costs of dementia care, relative to other disease, are also
documented at the level of out-of-pocket spending among families. A
recent examination of data from the Health and Retirement Study found
that out-of-pocket costs to families were 81% higher for patients with
dementia than for those without dementia. Compounding these out-of-
pocket costs to family caregivers are lost wages as caregiving demands
lead many individuals to reduce the amount of paid work in which they
can engage, yielding long-lasting negative effects on overall wealth.
Given the immensity of the toll that Alzheimer's disease and related
disorders are exacting upon the Medicare system and on American
families, we commend you for taking the important step of holding this
hearing. It is most promising that this hearing comes on the heels of
the House and Senate appropriations committee proposals for historic
and vitally needed increases in federal funding for research on AD.
Our personal commitments to conducting research on Alzheimer's disease
are strong, unwavering, and all the more encouraged by announcements of
such progress at the legislative level. In terms of our own work, our
pioneering research led to the development of the first chemical agent
to detect, in the brain of a living person, one of the hallmark
proteins associated with Alzheimer's disease. This agent, known as
``Pittsburgh Compound-B or PiB'' is now the gold standard for detecting
this protein, beta-amyloid, in research studies around the world. We
have authored some of the first reports on what it is like, from the
patient's perspective, to experience the uncertainty of early cognitive
changes and come to terms with planning for a likely course of
progressive cognitive decline (while setting aside other hopes and
dreams for old age). As leaders at the Pittsburgh ADRC we work with our
colleagues to maintain the overall infrastructure of the Center as a
resource for a multitude of research studies ranging from laboratory
based genetic studies to clinical trials and caregiving studies.
Despite these efforts at our Center and others across the country, we
must humbly acknowledge that even under the best case scenario of a
new, course altering treatment for Alzheimer's disease within the next
5 years, far too many individuals will continue to suffer the direct
and indirect effects of this disease. We therefore urge your committee
to identify new strategies for curbing the devastating impact that ADRD
are having on patients and families who are living with the everyday
realities of this disease while the world awaits a breakthrough in
prevention or treatment approaches. The inclusion of the Health
Outcomes, Planning, and Education (HOPE) for Alzheimer's Act (S. 857/
H.R. 1559) in the Senate Labor, Health, and Human Services
Appropriations Committee FY 2017 Funding Bill is certainly a welcome
and positive step. The HOPE Act would increase access to information on
care and support for newly diagnosed individuals and their families,
but we must go further. We need not only to increase access to these
existing forms of care and support; we need to improve the existing
options and capacity for care and support.
It is widely recognized that hospital based care and long term
institutionalization are not the answers for providing compassionate
and dignified care to persons with advanced dementia. Our colleagues in
health services research indicate that there is much promise in
innovative approaches to home and community based care. One example is
the Aging Brain Care (ABC) program, a team based medical home model of
care for persons with dementia and depression developed at Indiana
University. This program takes a holistic approach to managing the
biopsychosocial needs of both patients and their family caregivers
through community based primary care and has been shown to reduce
emergency department visits and hospitalizations, yielding annual cost
savings of thousands of dollars per patient (French et al., 2014).
Similar demonstration projects are needed, but they will require
financial support. Currently, groups of experienced care-professionals
are meeting as part of the Alzheimer's Association ``Care and Support
Operational Task Force.'' In a manner analogous to the process that set
milestones and a budget for basic and clinical research under NAPA,
these professionals are developing milestones for the enhancement of
care and support in our country. A budget will also be eventually
attached to these care and support milestones and, like the recent
increases both realized (FY 2016) and proposed (FY 2017) for basic and
clinical research, this care and support funding will need champions in
Congress to become reality.
Even in a difficult economic climate, the recent funding increases
prove that this can happen when our nation and our lawmakers establish
the struggle our families currently endure as a priority. We hope such
champions arise from this week's hearing, ``Alzheimer's Disease: The
Struggle for Families, a Looming Crisis for Medicare.''
Thank you for the opportunity to submit this statement of record.
Sincerely,
Oscar L. Lopez, M.D.
Center Director
William Klunk, M.D., Ph.D.
Center Co-Director
Jennifer Lingler, Ph.D., CRNP
Outreach and Education Core Director
_______________________________________________________________________
Articles cited:
Bail K., Goss J., Draper B., Berry H., Karmel R., and Gibson D. ``The
Cost of
Hospital-Acquired Complications for Older People With and Without
Dementia: a Retrospective Cohort Study. BMC Health Services Research,
2015;15:91.
French D.D., LaMantia M.A., Livin L.R., Herceg D., Alder C.A., and
Boustani, M.A. ``Healthy Aging Brain Center Improved Care Coordination
and Produced Net Savings,'' 2014;33(4):613-8.
Kelley A.S., McGarry K., Gorges R., and Skinner J.S. ``The Burden of
Health Care Costs for Patients With Dementia in the Last 5 Years of
Life.'' Annals of Internal Medicine, 2015;163(10):729-36.
______
WomenAgainstAlzheimer's Network
Statement of Jill Lesser, President
Chairman Toomey, Ranking Member Stabenow, and Members of the
Subcommittee:
On behalf of WomenAgainstAlzheimer's, a network of
UsAgainstAlzheimer's, I commend you for convening this hearing and for
your specific focus on the unique and difficult impact of Alzheimer's
on women and families. Our growing network of women believes that
Alzheimer's is one of the biggest economic justice issues and a growing
health crisis for women in America and around the world. Our work is
driven by passion and we are committed to finding new collaborative and
innovative approaches to funding, research, and advocacy to bring
Alzheimer's out of the shadows and into the spotlight.
Approximately 5.4 million Americans have Alzheimer's, and there are
over 15 million unpaid caregivers of Alzheimer's patients within the
United States. The number of individuals with Alzheimer's is expected
to almost triple, approaching 13.5 million, in the next few decades.
Without a cure, Alzheimer's is expected to cost the United States $2
trillion by 2020 and have a devastating impact on families who often
bear the brunt of the disease.
Alzheimer's is the 5th leading cause of death among women in the United
States. Of the 6.4 million Americans with Alzheimer's disease, 4.2
million or two-thirds are women. Recent studies suggest that men and
women may be affected by Alzheimer's differently. Perhaps partially as
a result of the increased likelihood of women developing Alzheimer's
and other chronic diseases that increase the risk of developing
dementia over their longer lifespan, women are much more likely to
suffer from severe depression. However, recent research suggests there
may be biological pathways that lead to greater cognitive impairment in
females. Emerging science indicates that hormonal changes and sex
differences in gene expression are potential explanations. And,
WomenAgainstAlzheimer's believes that the time is now for a commitment
to sex and gender differentiated research--whether in basic,
translational or clinical research.
Given the rapid increase in the population of older Americans, the
number of women with dementia and those serving as informal caregivers
will escalate and cost the economy a cumulative $5.1 trillion (in 2012
dollars) through 2040. This is according to ``The Price Women Pay for
Dementia: Strategies to Ease Gender Disparity and Economic Costs,'' a
new report recently released by the Milken Institute. We are proud to
be partnering with the Milken Institute on the distribution of their
groundbreaking report and on future research into the economic impact
of Alzheimer's disease on women as caregivers and people more likely to
live with the disease.
A key driver of the devastating impact of Alzheimer's disease on Women
is our role as caregivers. Women make up the majority of informal
caregivers, often as family members of dementia patients who need
around-the-clock assistance with the most basic needs. Significantly,
approximately 70% of Alzheimer's and dementia caregivers are women.
Half of women caregivers alter or have to stop working due to the
demands of caregiving for their loved one. In addition, 75% worry about
caregiving's toll on their own health.
Due to the time-consuming nature of dementia care, many women drop out
of the labor market, reduce work hours, or incur lost workdays and
productivity losses. All of these adversely affect the economy in
general and women's and families' economic security, in particular.
With women's participation in the labor force expected to rise in the
future, the impact on the economy will undoubtedly be magnified.
Identifying ways to support them is critical.
For these reasons, we support several important Alzheimer's initiatives
before the Finance Committee and we urge the committee to continue its
investigation into innovative solutions to relieve the economic burden
of this disease to American families. Specifically, we urge the Finance
Committee to explore new programs that support beneficiaries with
Alzheimer's and their caregivers, the vast majority of whom are women.
And, we applaud new approaches already being identified. On July 7,
2016, Ranking Member Stabenow and Senator Capito introduced S. 3137:
the Alzheimer's Beneficiary and Caregiver Support Act. This bill would
provide Alzheimer's disease caregiver support services to informal or
non-paid caregivers to both keep patients in the home setting for
longer periods of time and improve the quality of life of caregivers,
ultimately resulting in lower Medicare and Medicaid program costs.
We urge the members of the Senate Finance Committee to cosponsor this
important legislation and we look forward to working with you to enact
this bill.
Ultimately, as WomenAgainstAlzheimers--waiting is not an option. In May
of this year, we officially launched our We Won't Wait Campaign--a
multi-faceted campaign joining together advocates for women's health
and economic security to fight for a path to a cure--one that puts
women front and center as patients and caregivers alike. We look
forward to working with all of the members of the Committee to
alleviate the burdens of Alzheimer's disease on a growing number of
American families.