[Senate Hearing 114-847]
[From the U.S. Government Publishing Office]
S. Hrg. 114-847
FINDING A CURE: ASSESSING
PROGRESS TOWARD THE GOAL OF
ENDING ALZHEIMER'S BY 2025
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HEARING
BEFORE THE
SPECIAL COMMITTEE ON AGING
UNITED STATES SENATE
ONE HUNDRED FOURTEENTH CONGRESS
SECOND SESSION
__________
WASHINGTON, DC
__________
APRIL 6, 2016
__________
Serial No. 114-23
Printed for the use of the Special Committee on Aging
[GRAPHIC NOT AVAILABLE IN TIFF FORMAT]
Available via the World Wide Web: http://www.govinfo.gov
__________
U.S. GOVERNMENT PUBLISHING OFFICE
48-177 PDF WASHINGTON : 2022
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SPECIAL COMMITTEE ON AGING
SUSAN M. COLLINS, Maine, Chairman
ORRIN G. HATCH, Utah CLAIRE McCASKILL, Missouri
MARK KIRK, Illinois BILL NELSON, Florida
JEFF FLAKE, Arizona ROBERT P. CASEY, JR., Pennsylvania
TIM SCOTT, South Carolina SHELDON WHITEHOUSE, Rhode Island
BOB CORKER, Tennessee KIRSTEN E. GILLIBRAND, New York
DEAN HELLER, Nevada RICHARD BLUMENTHAL, Connecticut
TOM COTTON, Arkansas JOE DONNELLY, Indiana
DAVID PERDUE, Georgia ELIZABETH WARREN, Massachusetts
THOM TILLIS, North Carolina TIM KAINE, Virginia
BEN SASSE, Nebraska
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Priscilla Hanley, Majority Staff Director
Derron Parks, Minority Staff Director
C O N T E N T S
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Page
Opening Statement of Senator Susan M. Collins, Chairman.......... 1
Opening Statement of Senator Claire McCaskill, Ranking Member.... 3
PANEL OF WITNESSES
Ronald Petersen, M.D., Ph.D., Director, Mayo Clinic Alzheimer's
Disease Research Center, The Mayo Clinic Study of Aging, and
Chair, Advisory Council on Alzheimer's Research, Care, and
Services, Rochester, Minnesota................................. 5
David Hyde Pierce, Actor and Alzheimer's Advocate and Former
Member, Advisory Council on Alzheimer's Research, Care, and
Services, and Honorary Member, Alzheimer's Association National
Board of Directors, Los Angeles, California.................... 8
Polly Bradley, Director of Adult Day Services, Southern Maine
Agency on Aging, Scarborough, Maine............................ 10
Lisa P. Baron, J.D., Executive Director, Memory Care Home
Solutions, St. Louis, Missouri................................. 13
APPENDIX
Prepared Witness Statements
Ronald Petersen, M.D., Ph.D., Director, Mayo Clinic Alzheimer's
Disease Research Center, The Mayo Clinic Study of Aging, and
Chair, Advisory Council on Alzheimer's Research, Care, and
Services, Rochester, Minnesota................................. 35
David Hyde Pierce, Actor and Alzheimer's Advocate and Former
Member, Advisory Council on Alzheimer's Research, Care, and
Services, and Honorary Member, Alzheimer's Association National
Board of Directors, Los Angeles, California.................... 44
Polly Bradley, Director of Adult Day Services, Southern Maine
Agency on Aging, Scarborough, Maine............................ 46
Lisa P. Baron, J.D., Executive Director, Memory Care Home
Solutions, St. Louis, Missouri................................. 48
FINDING A CURE: ASSESSING
PROGRESS TOWARD THE GOAL OF
ENDING ALZHEIMER'S BY 2025
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WEDNESDAY, APRIL 6, 2016
U.S. Senate,
Special Committee on Aging,
Washington, DC.
The Committee met, pursuant to notice, at 2:27 p.m., Room
106, Dirksen Senate Office Building, Hon. Susan M. Collins,
Chairman of the Committee, presiding.
Present: Senators Collins, Heller, Tillis, McCaskill,
Casey, Whitehouse, Blumenthal, Donnelly, Warren, and Kaine.
OPENING STATEMENT OF SENATOR
SUSAN M. COLLINS, CHAIRMAN
The Chairman. The hearing will come to order.
Good afternoon. I am convening this hearing today to assess
our progress in combating Alzheimer's disease since the
enactment of the National Alzheimer's Project Act which I co-
authored with my friend and former colleague, Senator Evan
Bayh.
As the many family members and advocates here today can
attest, Alzheimer's is a devastating disease that exacts a
tremendous personal and economic toll on individuals, families,
and our health care system. The Centers for Disease Control
lists Alzheimer's as the sixth leading cause of death in our
country. Other estimates put it at number three on the list of
deadliest disease behind only cancer and heart disease.
Approximately 5.4 million Americans are living with
Alzheimer's today, including 37,000 in the State of Maine. That
number is soaring as our overall population grows older and
lives longer. If current trends continue, Alzheimer's disease
could affect as 16 million Americans by the year 2050.
In addition to the human suffering it causes, Alzheimer's
is our Nation's costliest disease. The United States spends
more than $236 billion per year, including $160 billion in
costs to the Medicare and Medicaid programs caring for people
with Alzheimer's. It is the only one of our Nation's top 10
diseases without an effective means of prevention, treatment,
or a cure. If we do nothing, the Alzheimer's Association
forecasts that the disease will cost the United States an
astonishing $1.1 trillion by 2050.
Despite these alarming statistics, for too long, our
efforts to fight this devastating disease lacked coordination
and focus. It was not until the National Alzheimer's Project
Act, known as NAPA, became law in 2011 that a strategic
National Plan to combat Alzheimer's was created, and it has
since been updated annually.
NAPA focuses our efforts to accelerate progress toward
better treatments and means of prevention and, ultimately, a
cure. We have taken many encouraging steps in the past 5 years
since NAPA became law as our panelists will discuss today.
This hearing presents the opportunity for a progress check.
Were are we in our fight against Alzheimer's, and what more
must we do in order to achieve our goals by the year 2025?
The experts have calculated that $2 billion a year in
research funding is needed to achieve our goal of preventing
and treating Alzheimer's by the year 2025. Last year, we were
able to celebrate tremendous progress. Many of us advocated
strongly for a $350 million increase for Alzheimer's research,
and it became law, and it would not have become law without the
determined advocacy of all the people in this room and back
home who backed our efforts. I thank you for that. This is the
largest increase in history, and it brings our total nearly
halfway to the $2 billion goal.
Compared to its human and economic toll, however, funding
for Alzheimer's and other dementias still remains
disproportionately low. Other serious diseases receive annual
funding of $2 billion, $3 billion, and even more than $5
billion, and those investments have paid dividends in the form
of new treatments and declining death rates.
There is also promising research that holds hope for
Alzheimer's patients and their families. The research community
is making strides through clinical trials with new therapeutic
targets. We simply must provide adequate funding to advance
this research.
While the nearly 60 percent increase in funding for
Alzheimer's research is welcome and significant, this is no
time to take our foot off of the accelerator. The increasing
number of Alzheimer's cases has dire implications for our
Federal budget. The average Medicare payment for an individual
with Alzheimer's is three times higher than for those without
the condition. For Medicaid, the average payments are 19 times
higher. Failure to achieve progress in the fight against this
disease will bankrupt our Federal and State health care
programs.
As we tackle Alzheimer's complexities, we must never forget
the family caregivers who are truly heroes. Our caregivers make
many personal and financial sacrifices to ensure that their
loved ones have the care that they need.
When I was in Maine recently, I saw an 88-year-old woman
taking care of her 90-year-old husband with Alzheimer's. I
talked to a woman in her 50's who, with her sisters, is
juggling the care of their mother with their work schedules,
and I spoke with an elderly husband trying to cope with his own
health problems as well as his wife's dementia.
Chances are, sooner or later, most of us will either be
family caregivers or be someone who needs one. America's
caregivers enable many living with Alzheimer's to remain in
their own homes.
NAPA places an important focus on Alzheimer's disease care
and services and caregivers serve on the Advisory Council. To
supplement these worthy efforts, I have introduced bipartisan
legislation modeled after NAPA that would require the
Department of Health and Human Services to develop a national
strategy to recognize and support our more than 40 million
family caregivers. It is called the RAISE Family Caregivers
Act, which I introduced with Senator Baldwin.
I am pleased to report that it passed the Senate
unanimously and it now awaits action in the House, so to add to
the to-do list of all the advocates in the audience today, and
we welcome all of you, I would urge you to ask your
Representatives in the House to pass the RAISE Act without
further delay.
By supporting family caregivers, we can assist more people
with Alzheimer's and living at home where they want to be; we
can help to delay or prevent more costly institutional care and
unnecessary hospitalizations, but caregivers need our help
through much more respite care and home health services.
Again, I want to thank the wonderful panel of witnesses
that we have with us today and all of the advocates who have
come from around the country to make the case for more research
funding and for further progress in helping our caregivers.
Finally, let me note that I understand from the Alzheimer's
Association and affiliated groups that there are more than a
thousand people in Washington today lobbying on behalf of those
with Alzheimer's.
Senator McCaskill.
OPENING STATEMENT OF SENATOR
CLAIRE McCASKILL, RANKING MEMBER
Senator McCaskill. There is purple everywhere, right?
I want to thank Chairman Collins for her leadership on this
Committee and specifically her leadership on behalf of
individuals and families that are suffering with Alzheimer's.
I would also like to thank the many advocates who are here
today, and I know it will not surprise anyone that I want to
give a special shout-out to all of my friends and advocates
from the State of Missouri, who have traveled here today to
lend their voices to this effort.
I hear you.
As the people in this room know, I am going to make an
effort here not to repeat everything that Chairman Collins said
because she covered the issues so well, but some of the
statistics bear repeating because they are startling, and I
think it is important that we repeat some of them because too
many Americans do not really understand the task ahead of us as
it relates to this disease.
Alzheimer's is a disease that wreaks havoc not just on the
patient's life but on the lives of that person's family as
well. With my generation, the Baby Boom generation, aging, the
number of Americans with Alzheimer's is going to increase
dramatically unless we find a way to prevent or effectively
treat the disease.
If nothing is done to change the trajectory of this
disease, costs are projected to increase over a trillion by
2050. We have no hope of balancing our budget and getting our
long-term debt under control if we do not address this disease
and the severe costs it will impose on Federal dollars.
Medicare and Medicaid are paying the vast majority of the
money to care for this disease. It is estimated that one out of
every three Medicaid dollars is spent on long-term care, much
of that for people with Alzheimer's. I know in the State of
Missouri that number is even higher, and it is not just cost to
the government--that is numbers on a page--but rather, the cost
that individual families are bearing. A study, a new study,
done by the Alzheimer's Association found that, on average,
families are spending $5,000 out of pocket per year to care for
their loved one with Alzheimer's, and many families are
spending multiples of that.
These numbers are not sustainable for our government, and
they are certainly not sustainable for the families.
Families are carrying so much of the burden of Alzheimer's
disease, and much of that burden is not financial. Much of that
burden is, in fact, emotional, psychological.
I would like to recognize now for a moment if everyone
would raise their hand if they are currently or have been a
family caregiver from someone suffering from Alzheimer's.
[Show of hands.]
I am not surprised. The impact of this disease is so
significant that it turns anyone who it touches into an
advocate to make sure we do something about it. There are more
than 15 million caregivers for people with Alzheimer's disease,
and last year they provided over 18 billion hours of care for
their loved ones.
I would like to introduce one of our witnesses on today's
panel, whose organization is providing critical support for
caregivers in my home State of Missouri. Lisa Baron is the
Founder and Executive Director Memory Care Home Solutions based
in St. Louis.
Memory Care Home Solutions works to extend and improve time
at home for people with dementia by providing in-home training
and support for family caregivers. Her organization primarily
serves families with the most need, and they offer their
services free of charge. The model of Lisa's organization not
only helps seniors to remain in their homes but also provides
critical assistance to family caregivers who are so often
overlooked.
I look forward to hearing Lisa's testimony and learning
more about the interesting work her organization is doing in
the St. Louis area.
We must continue to provide resources and support to help
those with Alzheimer's disease and those who care for them, but
if we do not also invest more in medical research this disease
will bankrupt not only our governments but our families.
I was very pleased to see that last year's budget increased
funds for NIH to research Alzheimer's disease. Still, the
funding is too low and receives much less than other diseases
with similar outcomes. I cannot think of another disease that
is more deserving of the increased research dollars. The
Chairman of the Advisory Council on Alzheimer's Research, Care,
and Services has testified to Congress that we must devote at
least 2 billion a year to Alzheimer's research in order to meet
the goal of preventing and effectively treating the disease by
2025.
There is a lot of talk about government these days. There
are too many that want to make government the enemy. Government
investment in medical research has long made America a beacon
to the world for medical advancement. Now is no time to turn
from that important role our country has served as a leader in
finding the cures to so many diseases. I would like to place
Alzheimer's on that list. I hope we continue to increase our
investment in NIH research for Alzheimer's disease.
I look forward to the testimony of our distinguished panel.
Like the Chairman, I am incredibly grateful for all of you
giving your time and your energy to help with this incredible
problem that our country faces, and together, we are going to
try to do all we can to make a difference.
Thank you, Madam Chairman.
The Chairman. Thank you. Thank you very much.
We will now turn to our panel, and first we will hear from
Dr. Ronald Petersen, the Director of the Mayo Clinic
Alzheimer's Disease Research Center and the Mayo Clinic Study
of Aging. In 2011, Dr. Petersen was appointed as Chair of the
Advisory Council on Alzheimer's Research, Care, and Services
created by the National Alzheimer's Project Act, and it is a
great pleasure to welcome you back, Doctor.
Next, I would like to welcome David Hyde Pierce, an award-
winning actor who is well known to all of us for his role in
the beloved television series ``Fraser.'' Mr. Pierce is a long-
time and passionate advocate for Alzheimer's research and a
former member of the Advisory Council.
We will then hear from one of my constituents, Polly
Bradley, who is the Director of Adult Day Services at the
Southern Maine Area Agency on Aging. Ms. Bradley will share her
firsthand experience of the challenges that caregivers face and
the importance of respite care, and Senator McCaskill has
already introduced Lisa Baron, the Executive Director of Memory
Care Home Solutions.
Did you have anything you wanted to add?
Senator McCaskill. No.
The Chairman. Okay. Thank you.
We will start with you, Dr. Petersen.
STATEMENT OF RONALD PETERSEN, M.D., PH.D.,
DIRECTOR, MAYO CLINIC ALZHEIMER'S DISEASE
RESEARCH CENTER, THE MAYO CLINIC STUDY OF
AGING, AND CHAIR, ADVISORY COUNCIL ON
ALZHEIMER'S RESEARCH, CARE, AND SERVICES,
ROCHESTER, MINNESOTA
Dr. Petersen. Thank you very much. Good afternoon, Chairman
Collins, Ranking Member McCaskill, distinguished members of the
Senate Special Committee on Aging.
I am Ron Petersen. As the Senator has indicated, I direct
the Alzheimer's Disease Research Center at the Mayo Clinic and
Chair the Advisory Council on Research, Care, and Services for
the National Alzheimer's Plan, but today I am speaking as a
clinician and a researcher and not a special government
employee, I have been told, so I thought I would add that.
As you know, as has been recounted, the National
Alzheimer's Project Act was signed into law by the President in
2011, charging the Secretary for Health and Human Services with
the task of addressing the first plan for Alzheimer's disease
in this country. That was done, it was published in 2012, and
as the law required, it has been updated annually since that
time.
By Alzheimer's disease, we include also other disorders
such as frontotemporal dementia, Lewy body disorders, vascular
cognitive impairment, and dementia, so it is a broader scope
than just Alzheimer's disease.
Senator Collins asked the questions: Have we made any
progress since 2012? Has it made a difference?
I think the short answer is a definite yes, but there is a
caveat; we have more work to do, no doubt.
In this difficult funding climate in Washington, over the
last several years, Alzheimer's disease has received increasing
attention as a disorder of interest. At the National Institutes
of Health, Dr. Francis Collins has put this on his priority
list such that at the beginning of the National Plan the annual
funding for Alzheimer's disease was about $484 million a year.
In 2012, Dr. Collins repurposed $50 million toward Alzheimer's
disease.
2013, the year of sequestration, everything went south
when, in fact, Dr. Collins and Dr. Richard Hodes of the
National Institute of Aging found funds in their discretionary
accounts to sort of buoy up the Alzheimer's funds to keep them
afloat.
In 2014 and 2015, Congress allotted funds specifically for
Alzheimer's disease, for which we are gratefully impressed by
the gesture by Congress at that point in time.
Most notably, in December 2015, you passed the fiscal year
1916 budget which increased the Alzheimer's disease-related
disorders funding by $350 million, bringing the overall funding
to around $991 million, approaching the $1 billion mark. There
is a tremendous of confidence, I think, in the research
community and people who deal with Alzheimer's disease, and we
are greatly appreciative of that effort.
In addition, in 2014, Congress passed the Alzheimer's
Accountability Act. This charged the National Institutes of
Health with the task of generating a budget annually to say:
What will it take for the researchers in the field to
accomplish the goal of the National Plan by 2025?
With that effort, Dr. Collins, Dr. Hodes, and Dr. Walter
Koroshetz, of the NINDS got together and have put together
budgets now, so for the Fiscal Year 202017 budget, they
estimated it would take $323 million. They presented that to
the Advisory Council last summer. Currently, they are working
on the Fiscal Year 202018 budget.
We strongly encourage Congress to endorse these
thoughtfully generated funding estimates since these are done
by the experts at NIH, saying this is what it is going to take
to get to that point in the disease process.
However, to be honest, our job is nowhere near done. The
2025 goal of the plan is fewer than 10 years away. While the $1
billion we have now, almost 1 billion, is wonderful, the
Council really has estimated it is going to take $2 billion,
and that puts it on par, relatively speaking, with other major
diseases in the country--cancer, heart disease, HIV/AIDS, so
has the investment in those entities been fruitful? Absolutely.
Those entities have shown remarkable progress, reducing the
annual death rate of those diseases.
Alzheimer's disease, in contrast, is just the opposite. The
annual death rate for Alzheimer's disease continues to climb.
Alzheimer's disease is the only disorder in that category
without an effective cure, treatment, or something that is
going to make a difference down the line, so we have a lot of
work to do.
As Senator Collins mentioned, this may be the single
disease that bankrupts the health care system. We spend more
money caring for this disease than anything else. At previous
hearings before this Committee, it has been documented that, in
fact, this is the costliest disease to the country, outweighing
cancer, outweighing heart disease. Alzheimer's disease is where
it is at, so the bottom line is these investments pay off, so
what we are doing now not only for individuals, for families,
and for the health care economy, but the results are there.
At a research summit last week at the National Institutes
of Health, Alzheimer's disease and related conditions were
characterized as multifactorial. Ultimately, we will probably
need what is known as combination therapy. There is not going
to be a single pill, a single antibody that is going to cure
the disease. It is going to take inroads from several different
factors.
Right now there is extensive work going on in the research
community refining biomarkers, so the biomarkers are aimed at
these individual pathologic components such that when we
identify a biomarker that is contributing to the disease we can
then create a therapy for that particular biomarker and that
particular pathologic entity.
Has this worked elsewhere? Absolutely. That is the rule in
HIV/AIDS, in cancer, in hypertension.
In high blood pressure, you get one number when you read
that from the blood pressure cuff, but it could be caused by
arterial stiffening, kidney disease, heart disease, fluid
disorders, all kinds of problems, so we have a multifactorial,
combinatorial approach to treating that disease. Single number.
High blood pressure.
We think that is where Alzheimer's disease is headed as
well, so while this is an exciting time to be involved in
Alzheimer's disease research, especially with the increased
funding that you have provided, our patients and families
cannot wait. It is incumbent upon all of us, from the
scientific, clinical, advocacy, and legislative perspectives,
to not disappoint our constituents. These are the people who
are counting on us to make a real difference.
The disease is not slowing. It is not going away. It is
actually increasing because of the aging of America, so we have
our work ahead of us, but we have made progress.
I would like to commend both the Federal and the non-
Federal members on the Advisory Council for all of their work
and also the Federal officials with the Department of Health
and Human Services, particularly the Office of Assistant
Secretary For Planning and Evaluation, since they have been the
individuals who have really shepherded this through the entire
process.
In addition, the advocacy groups, most notably the
Alzheimer's Association, have been absolutely fundamental in
this effort along the way.
However, I must implore Congress to continue to focus on
additional funding for Alzheimer's disease and related
conditions going forward. The need cannot be any greater than
it is today.
Thank you very much.
The Chairman. Thank you very much, Dr. Petersen. Thank you
for your testimony.
Mr. Pierce.
STATEMENT OF DAVID HYDE PIERCE, ACTOR
AND ALZHEIMER'S ADVOCATE AND FORMER
MEMBER, ADVISORY COUNCIL ON ALZHEIMER'S
RESEARCH, CARE, AND SERVICES, AND HONORARY
MEMBER, ALZHEIMER'S ASSOCIATION NATIONAL
BOARD OF DIRECTORS, LOS ANGELES, CALIFORNIA
Mr. Pierce. Madam Chair, Ranking Member McCaskill, members
of the Committee, thank you for this opportunity to testify
before the Senate Special Committee on Aging. I am very honored
to be here, poised between the advocates behind me and the
advocates in front of me, and I want to thank the Committee for
its continuing to focus on Alzheimer's, which is an escalating
national epidemic.
My name is David Hyde Pierce. Like 15 million Americans
today, my family has a connection to Alzheimer's disease and
dementia. We lost my grandfather to Alzheimer's in 1992, and my
dad died in 1998 with vascular dementia that was also probable
Alzheimer's, and my family saw not only their loss but also, of
course, the toll it took on my grandmother as she tried to care
for my grandfather and then my mom as she tried to care for my
dad. Those experiences are familiar to just about everyone in
this room and across the country.
When I first testified before the Labor, HHS, Education,
and related agencies' Committee on Appropriations in 1998, we
were seeking increased funding for Alzheimer's research. I
remember I was here in D.C. with Maureen Reagan, and we had the
wild dream of getting a billion dollars, and here we are almost
20 years later, and we are just 9 million short of that goal.
For many years, we were spending so much to care for those
living with dementia while investing so little in research, and
as has been said today, since then, we have seen the unanimous
passage of the National Alzheimer's Project Act and the
establishment of the first National Plan to Address
Alzheimer's, last year this historic increase in research
funding for Alzheimer's that effectively doubled the investment
of just 6 years ago, and those advances would not have been,
would not have happened, without your leadership here in
Congress, and I thank you for your support and for listening to
the support of these amazing people behind me.
I have had the honor and the privilege to serve on the
Advisory Council on Alzheimer's Research, Care, and Services
formed through the National Alzheimer's Project Act as a
caregiver representative, and the first thing I want to say
about that council is it has been so wisely and compassionately
run by Ron Petersen. He has done an extraordinary job and kept
us all aware of why we are there.
It is also, by the way, one of the most happily combative
situations I have ever been in my life. It is extraordinary
when you have advocates who feel that ``It does not matter what
the cost is. This is what we need,'' and people who work in the
Federal Government who say, ``Well, it actually does kind of
matter what the cost is.'' Then we have the public comment,
this extraordinary group of just folks who come, some of them
white-hot with rage and frustration, and they just take off the
gloves, and they say what they feel, and we all get to
experience what the real need is in this country. It is an
amazing council, and it has made progress, as Ron has alluded
to.
I think we have had progress in focus of the council, and
through the National Plan to Address Alzheimer's Disease we
have a developed a research road map and milestones that will
guide the development of new diagnostics, treatments, and
interventions. We have learned more about the other related
dementias and conditions, like Down syndrome which has a strong
link to Alzheimer's disease, and we have looked at the State of
clinical care and long-term supports and services.
However, similar progress has alluded us in the goals to
enhance care quality and efficiency, and to expand support for
people with Alzheimer's disease and their families. This
investment in research that we have been talking about is so
vital, but we need an equally strong investment in caring for
those living for this disease today. We need to prioritize
actions within the National Plan that will have the greatest
impact on improving the lives of those living with dementia and
their families, and we must find a way to develop action steps
with quantifiable metrics that will show progress in meeting
those goals.
I will give you an example. After diagnosis, for many
people, that is the end. The doctor has nothing else to say to
them. ``Here are some pills. I will see you in a year.''
They have no idea what to do or where to turn. They are
left without an understanding of what to expect from the
disease or even any steps that they could take to manage other
conditions that many people at this age have, like diabetes or
heart disease. They are left completely lost and uncertain as
to what to do.
Although there is no treatment for Alzheimer's, there are
many things that can be done to improve a family's ability to
cope with the disease. Creating a care plan can help prevent
unnecessary hospitalizations by creating new ways to manage
medications.
We have people's whose ability is compromised because they
have the disease and people whose ability is compromised
because they are taking care of someone with the disease. They
are stressed, they do not know which way is up, and they are
supposed to be worrying about, you know, medication
prescriptions and tell the right pill and when to have it, so a
plan can help them. It can help with a strategy to prevent
falls.
The HOPE for Alzheimer's Act, which is a bill supported by
many members of this Committee, does just that by creating a
benefit for care planning after diagnosis. HOPE provides a road
map for the people living with dementia and their caregivers.
HOPE ensures that those living with the disease can have an
active role in their care plan and ensures receiving the best
care that can be provided and also ensures that their diagnosis
is included in their medical record, so any time they go to the
hospital or are dealing with another one of these illnesses,
people know exactly who and what they are dealing with.
On top of that, a recent economic study of the HOPE for
Alzheimer's Act found that it would reduce Federal spending by
$692 million over 10 years if implemented today, so I urge the
Congress to consider this important legislation that will not
only benefit those living with Alzheimer's and their caregivers
but will actually save the government money.
Finally, I want to talk about the idea of American
exceptionalism, which I have been thinking about in the context
of this Committee. I kind of believe in American exceptionalism
not as something we are given or born with but as something we
must earn and justify and prove, and I believe this fight
against Alzheimer's and dementia is a great proving ground.
For years, we have had the potential and the skills and the
resources to lead the world in researching dementia and
eventually eliminating it. For years, we have had the potential
and the skills and the resources to show the world by example
the best way to truly care for those living with dementia, but
I believe our exceptionalism does not come with our potential;
it comes with our seizing our potential and acting on it, and
that is what the members of this Committee have done. Madam
Chairman, Senator McCaskill, that is what you have been doing,
and I encourage you to continue to do that.
We can bring Alzheimer's disease to its knees. We can give
suffering families in America and throughout the world the
greatest gift we could possibly give--hope.
Thank you.
The Chairman. Thank you very much for your powerful
testimony. Thank you.
Ms. Bradley.
STATEMENT OF POLLY BRADLEY, DIRECTOR
OF ADULT DAY SERVICES, SOUTHERN MAINE
AGENCY ON AGING, SCARBOROUGH, MAINE
Ms. Bradley. Chairman Collins, Ranking Member McCaskill,
and distinguished members of the Committee, thank you for the
opportunity to speak about the Southern Maine Agency on Aging's
efforts to support Maine families with dementia.
I am here as a professional and the child and caregiver of
someone who suffered from dementia. We are hoping for a cure.
However, until a cure is found, organizations like SMAA,
Southern Maine Agency on Aging, are providing a tremendous
level of support for families coping with these huge
challenges.
I would like to speak about the importance of adult day
services and the impact that they have on the members who
attend. These members are teachers, veterans, doctors,
businessowners, our moms, our dads, and dementia has slowly
robbed them of all their good years, their last years. SMAA is
on the leading edge of helping all these folks.
Since 2002, Southern Maine Agency on Aging has developed
two state-of-the-art adult day centers. They are, arguably, the
best in New England and maybe even in the United States.
Knowing that Maine is the oldest State by medium age, we knew
we needed to redesign our programs. We embarked on a complete
overall, and shifting to a medical model which is person-
centered, we also wanted to ensure that the model would be
affordable, so every design detail, from the colors to the
textures to the fabrics, the lighting, just every detail in
design on the latest research is what we did so it would be the
best for our members.
Our experience, as well as many research studies, have
demonstrated that social interaction and activity helps
maintain the physical and emotional health as maintaining
cognitive functioning.
The centers that we have developed offer multiple rooms,
giving us the ability to run several different programs
simultaneously that are developed for each person as an
individual person-centered plan. The centers offer multiple
rooms--okay. Sorry.
We have designed these centers on a sustainable financial
model, allowing us to care for a total of 75 members per day
within both centers. We employ over 40 people in both centers,
and SMAA itself provide support to over 200 families, helping
with the support of their care--the loved ones.
Another differential is our professional staff. In addition
to the highly trained and compassionate direct service
professionals, we employ two social workers, an RN, a licensed
recreational therapist.
Our centers offer our members a home-away-from-home
environment, and we have a number of volunteers assisting our
staff.
We collaborate with local universities, which allows us to
offer practical training in social work, EMT, occupational and
recreational therapy students who are focusing on geriatrics at
both the undergraduate and graduate levels.
All of this expertise gives our members the opportunity to
socialize and make friends throughout the day in a supportive
day center, reducing depression, anxiety, minimizing the risk
of falling. Our programs include a number of activities--pet
therapy, exercise, music, art therapy, gardening, cooking, a
French club, newsletters. We serve nutritious meals and snacks.
We offer transportation. We offer hygiene, showering included.
Several times a year our members work on special projects,
like making dog treats for local animal shelters and other
community projects. The activities give them a tremendous sense
of pride in being able to contribute to the local communities.
Overall, you can just visualize how this is a wonderful
experience for all the members that come every day and enjoy
all these things I just spoke to.
Family caregivers tell us that their loved ones are
happier. They come home from the centers wanting to talk about
their day. They refer to our centers as their club, which makes
them eager to return.
Our program extends to the caregivers because we know that
it can be a lonely and depressing journey for all of them. Our
caregivers are our spouses, adult children, grandchildren,
among others, who desperately want their loved ones to stay
home. For many, avoiding a residential situation is their goal.
The word ``institution'' speaks for itself. In the eyes of many
people, it is not an option.
Our family caregiver programs are designed to provide
support, counseling, education, and other referrals. Our social
workers work closely with the caregivers each day, allowing
them to share their innermost feelings, which is far difficult
for them to do, regarding stress, self-care, behavioral
challenges with their loved ones, their hopes, and their
doubts. In addition, we have the Savvy Caregiver, which is a
national evidence-based program, as is Savvy Caregiver
Advanced, for ongoing support and training throughout the
journey.
Family caregiver support is a must for the overall health
and well-being of the caregiver and the member. Research shows
that caregivers have a higher risk of heart disease, lower
levels of self-care, increased substance abuse and depression.
Our centers are an oasis for caregivers to reconnect with
friends, or in the case of adult children, allowing them to
continue work knowing that their loved one is safe and engaged.
This has a ripple effect to better health and happiness, and
creating better days for everybody involved.
On a more personal note, I was extremely blessed to have
spent the last 10 years caring for my dad, Tim Stewart, who had
frontal lobe dementia. My father was a very successful
businessman. My parents were tireless volunteers and generous
patrons of many charities. He was a charismatic person who
loved being the center of attention, telling jokes, and making
people laugh. Everybody loved him.
Frontal lobe dementia takes all filters away. This was true
of my dad. His extroverted nature manifested into his dementia,
and then became the ``Crazy Old Bald Guy.'' He, however, was
very proud of this name. He wore clothing, hats, made bags with
the logo of this on them.
This became emotionally and physically challenging for all
of us, especially my mother. His extroverted nature, blended
with dementia, made every day a struggle.
Local businesses and restaurants which he had frequented
for years asked him not to return because of his behavior. His
world/our world shrunk quickly. We were lucky to have the means
to hire caregivers during the day to give my mom a break, but
even with hired support the burden is still very heavy.
SMAA's first new center in Falmouth did not open in time to
help for my dad. We made the difficult decision to place him in
an institution, because my parents' involvement with SMAA, we
are honored to have the Stewart Center carry on our name. We
treasure the memory of my dad cutting the ribbon at the Stewart
Center before dementia stole his last bit. We lost my dad in
December.
Everyone, at some point, will be touched by this disease.
It is staggering to know that every 67 seconds someone in the
U.S. develops Alzheimer's. Until we find a cure, it is
comforting to know that centers like the Sam L. Cohen Center
and the Stewart Center are here to help.
Thank you.
The Chairman. Thank you very much for your excellent
testimony.
Ms. Bradley. Thank you.
The Chairman. Ms. Baron.
STATEMENT OF LISA P. BARON, J.D.,
EXECUTIVE DIRECTOR, MEMORY CARE
HOME SOLUTIONS, ST. LOUIS, MISSOURI
Ms. Baron. Thank you, Chairman Collins, Ranking Member
Senator McCaskill, and distinguished members of the Special
Senate Committee on Aging. Thank you for this opportunity to
highlight a program that extends and improves time at home for
families who are caring for someone with Alzheimer's, dementia,
or cognitive impairment.
My name, as you know, is Lisa Baron, and I am honored to be
here today. I am honored to lead, and to have founded, Memory
Care Home Solutions.
We all know that we are facing an incredible national
crisis with Alzheimer's disease and that there is an incredible
need to find a cure by 2025. However, it is also important to
recognize the work that can be done today to help the 15.9
million unpaid dementia caregivers who are at home right now.
I am here to talk about a bright spot, a ray of sunshine in
what is a very dark landscape in Alzheimer's. I founded Memory
Care Home Solutions 16 years ago, also as a result of my family
experience.
Now Memory Care Home Solutions particularly serves low-
income families. Fifty-four percent of the people we serve have
an annual income of $20,000 or less, and because of generous
foundations, corporations, donors, the State, we are able to
provide this service free of charge.
My mother-in-law, Betty Baron, whose children are behind
me, began experiencing signs of Alzheimer's disease in 1997.
Our family was blessed with educational and financial
resources. Yet, nothing prepared us for the nightmare of
Alzheimer's disease, and we can only imagine what families are
dealing with and what their challenges are.
For our family, ultimately, we were most concerned with my
father-in-law. Was he eating enough? Was he sleeping enough?
Was he isolated?
My in-laws lived in a wooded area in St. Louis, and one
night my father-in-law was very busy making dinner, and Betty
just left the house undetected. After a really traumatic night
and a lot of searching, the fire department found her. She had
fallen into the bottom of a window well, and miraculously, she
was totally unscathed, but it was really at that moment that I
knew that I had to help other families who are facing the
destruction of Alzheimer's disease, and that is totally what
Memory Care Home Solutions does. It helps prevent these sorts
of family crises.
I did not know exactly where to turn, so I turned to
Washington University and the Alzheimer's Knight Research
Center, and they directed me to the profound body of evidence
on proven interventions to help families like ours, but I must
say that I was really stunned to learn that there is no
coherent, organized system to help families with behavioral
interventions in their home now, and so our professionals went
to work building on this evidence to make a community-based
intervention for families facing dementia.
I highlight this connection between research and between
community health because if it was not for your generosity, for
your prioritizing of this incredibly important issue on a
Federal level, we would not have a base of knowledge from which
to develop our program nor would we have the National
Alzheimer's Protection Act, which specifically calls for, among
many other things, expanding supports for people with
Alzheimer's and their families.
Yes, we need a cure, but yes, we also need to get proven
interventions into the hands of the families who are caring for
these 5.4 million people right now. Our program is a model, and
it can be expanded and replicated throughout the United States.
With Memory Care Home Solutions, social workers and
occupational therapists from our staff go directly into the
homes. They uncover issues that the family is dealing with.
They teach them behavioral strategies. They set them up,
whether it is in the bathrooms, the kitchens, wherever. They
practice techniques with them. They practice transferring with
them. They set families up for success.
We also educate families on many sort of Alzheimer's
complications, like urinary tract infections or bed sores or
falls or dehydration.
This focus not only helps the families, of course, and the
patients, but it also saves billions of dollars. In 2015, as
has already been mentioned, the national estimated cost for
Alzheimer's and related dementia reached $236 billion annually.
We know that up to half of older adults who have some form
of dementia make at least one visit to the emergency department
annually. Of those, 40 percent are ultimately admitted to the
hospital often for stabilization or due to comorbidities, and
of those that are discharged, 58 percent return within 30 days.
This is an incredible cycle that really underscores the need
for family education.
Memory Home Solutions intervention results in a two-third
reduction, an average of a two-thirds reduction, in 911 calls,
emergency department visits, and readmissions. Programs like
ours create a win-win. There is a significant increase in
quality of life, and there is also a significant decrease in
cost.
Ninety-one percent of the people who remain in our program
with us also remain at home in the community. In Missouri
alone, this piece alone, of remaining at home rather than being
prematurely institutionalized, translated into a cost savings
of over $30 million.
Unfortunately, most families across our State do not have
access to this type of care, and I urge the Committee to
allocate funding and resources to equip all families in the
United States with effective, nonpharmalogical forms of
treatment for those with dementia.
I would like to close now with a quote from Dr. Covinsky of
UCSF, cited in the Administration on Aging's White Paper: ``If
these interventions were drugs, it is hard to believe that they
would not be on the fast track to approval. The magnitude of
benefit and quality of evidence supporting these interventions
considerably exceed those of currently approved pharmalogical
therapy for dementia.''
I thank you for this incredible opportunity. It has really
been an honor to be here, and I urge you to think about the
families of those with Alzheimer's who are in desperate need of
all of our help. Thank you.
The Chairman. Thank you very much for your excellent
testimony. Thank you. Thank you.
Dr. Petersen, I am going to put up a chart that compares
the amount that we are spending today on some other very
important diseases--I think the staff will bring you a copy of
the chart if they have not already--compared to what we are
spending on Alzheimer's and related dementias.
You are the source that I quote all of the time on the fact
that we should be spending $2 billion a year to get the kinds
of breakthroughs that we need, and if you look at what we spend
on cancer, HIV/AIDS, cardiovascular disease, we have seen that
those investments have paid dividends, that they have resulted
in better treatments and longer lives.
One question that I get from my colleagues is: If we keep
increasing the funding for Alzheimer's disease research, as I
have strongly advocated, are we making investments that will
allow possible treatments that are in the pipeline now to be
brought to fruition more quickly?
In other words, what would be the result of increasing the
investment to the $2 billion a year that the Advisory Council
recommends?
Dr. Petersen. Well, thank you, Senator, for that question.
It is very insightful from the beginning because, I think,
as you are suggesting that the investments we have had in
cancer, HIV/AIDS, and cardiovascular disease has indeed
resulted in a reduction in morbidity and mortality in those
disorders.
We can--the scientific community is poised to make these
kinds of contributions. There are numerous pipeline drugs out
there that are ready to be deployed into clinical trials that
would, in fact, inform us on potential therapies for these
diseases, and I think if we are able to launch, if sufficient
funding were available, we would be able to see the results of
these clinical trials sooner, more efficiently, and have an
impact, and reduce that cost and the individual suffering to
our country.
The Chairman. Thank you.
Mr. Pierce, you mentioned that you first testified before
Congress, and I believe I was at that hearing. I think it was
1998 that you said. What has changed subsequently in the
advocacy efforts for those who are seeking to help us make
progress in this area?
Mr. Pierce. Thank you, Senator.
You know, the biggest change that has happened in the years
that I have been involved is a direct result of research.
Research has led us to be able to diagnose people at a younger
age. Earlier in the disease, excuse me, and because we can do
that, there are more people who are speaking for themselves--
people who have the disease, who are here advocating for
themselves. That is an incredible step, and I remember from our
council meetings, some of the vigorous input from the public
comment was people with Alzheimer's, who said, ``You know, stop
saying that we are dying of Alzheimer's. We are living with
Alzheimer's.''
Now I remember when we all started advocating we had to say
people were--we were trying to get people's attention. Take a
look at this disease. Do you realize what is happening?
Not only do we no longer have to do that, but we have got
people with the disease saying, ``Shut up already. This is a
part of our life that we are trying to get along with.'' That
is where we find ourselves, and why all this talk about funding
caregiving and better care and better treatment is so vital.
The Chairman. Thank you.
Ms. Bradley, when I visited the center that is named after
your father, I was so impressed with the wonderful variety of
activities that were going on. It obviously was a very
stimulating environment for your clients, but it was also
giving a much needed break to their caregivers, many of whom
were older individuals.
I was curious about the funding for the center. Now,
obviously, the Area Agencies on Aging are funded under the
Older Americans Act, but do the individuals who come to your
center, sometimes every week day, pay themselves, or is there
help under the Medicaid or Medicare programs for the kind of
enriching environment and safe environment that you are
providing?
Ms. Bradley. Yes, we have a number of different funding
sources. We do have an hourly rate for people for private pay,
and then we have veterans funding. We have some State funding
through the Department of Health and Human Services. We have
the MaineCare day health, which is through the MaineCare
Program, so if people are private pay, there are some subsidies
that they can get in addition, so there is a number.
The social workers will meet with the folks and sit down
and discuss any kind of funding possibility, but for the most
part the percentage in Falmouth we have seen is mostly private
funding.
The Chairman. Thank you. The kind of service you are
providing is just wonderful, and I really commend you for it.
Ms. Bradley. Thank you.
The Chairman. Senator McCaskill.
Senator McCaskill. Thank you very much.
I am so appreciative of all of you being here today. I am
going to hope everyone understands. I would like to spend most
of my time with Ms. Baron because of the model that she is
embracing and the impact it has had on my community, my home
town of St. Louis.
I am curious. How do families find you?
Ms. Baron. Sure. We do--we spend a great deal of time and
energy doing public outreach and education, and we also connect
with family physicians and do lots of training for discharge
planners within hospitals, so we get referrals from the
wonderful Alzheimer's Association--a very active, wonderful
chapter--in St. Louis, and we also get referrals through word
of mouth, through our public outreach and education to
hospitals, adult day care centers, other referring sources.
Senator McCaskill. We always want to focus on how much
everything costs, and so I am interested in the model here. You
say 54 percent of the families you serve have household incomes
of less than $20,000, and you are providing this free of
charge. Can you give us what that--with the services you are
providing these families, can you monetize that for us----
Ms. Baron. Sure.
Senator McCaskill [continuing]. and tell us approximately
what it is costing your organization----
Ms. Baron. Yes.
Senator McCaskill [continuing]. to provide this?
Ms. Baron. Just on that specific piece, which is the in-
home piece, it costs us between $1,800 and $2,100 based on how
many occupational therapy visits the family takes.
Senator McCaskill. Less than one emergency room visit by
multiples?
Ms. Baron. Right.
Senator McCaskill. Have you thought about, have you
discussed with, integrating your services into the diagnostic
process? Has there been an effort?
I mean, it seems to me--the Chairman and I were talking to
each other after your testimony--if you were a pill, you would
be approved----
Ms. Baron. Right.
Senator McCaskill [continuing]. and we would pay for it.
Ms. Baron. Yes, just like that quote.
Senator McCaskill. Because you are not a pill----
Ms. Baron. Yes.
Senator McCaskill [continuing]. and you do not have Pharma
lobbying for you and you do not have a big company marketing
you, like all the commercials we see on TV, that if we could
only somehow get our doctor to give us this drug, we are going
to be young and thin and beautiful and happy and have sex for
the rest of our lives.
You know, you are struggling to deliver a basic, and it is
so frustrating to me that we cannot figure out how to integrate
this basic, particularly because it is going to save us money,
so have you talked to Wash U. or to the doctors at Wash U.
about actually integrating your program into the diagnostic
process?
Ms. Baron. Yes, we have, so we have a number of pilots that
are going on now to look at how to integrate in a structured
way through hospital ways so that it is, like you said, a
systematic, structured partnership in which they are referring
to us directly.
Senator McCaskill. Do you provide these services for
families that can afford to pay for it?
Ms. Baron. We do. We do. It is an equal opportunity
provider, and of course, we do provide.
Senator McCaskill. I hope you charge them double.
Ms. Baron. We do not charge. We charge them the exact same
amount we charge the other ones.
Senator McCaskill. I am teasing, but you know, I would like
to get you more money to help serve.
Ms. Baron. Right. That would be great.
Senator McCaskill. I think we forget sometimes. I mean, I
love it that all these people are here, but there are so many
families that could not even dream of coming to Washington, DC,
could not even dream of being on an airplane----
Ms. Baron. Right.
Senator McCaskill [continuing]. or dream of doing anything
outside of trying to figure out a way, and in Missouri, we have
not even expanded Medicaid, this becomes an even more difficult
problem because there is this gap. They are too poor to get
help to get insurance coverage, and we have not expanded the
Medicaid program, so they are falling into this hole.
I am a little desperate to figure out how we can migrate
this program more places because it makes such sense.
Ms. Baron. It really does. Thank you.
Really, to replicate it would not be difficult. You know,
we have looked into that, and basically, with a very small
infrastructure and a small staff we could be integrating this
in many, many cities.
Senator McCaskill. What is your annual budget?
Ms. Baron. 1.2 million.
Senator McCaskill. How much of that is donated?
Ms. Baron. 99.93 percent.
Senator McCaskill. On an annual basis.
Ms. Baron. Right.
Senator McCaskill. Okay.
Ms. Baron. Well, I will leave it at that.
Senator McCaskill. Well, I look forward to continuing to
visit with you because I think there ought to be some
strategies that we ought to see if we cannot get this more
institutionalized because this kind of basic outreach to
families, to me, is a game-changer in many ways, and I think it
is very, very important. You should be very proud of the work
you have done.
Ms. Baron. Thank you. It is a great staff and a great group
that is supporting us. Thank you very much. Thank you.
The Chairman. Senator Tillis.
Senator Tillis. Thank you, Madam Chair. Thank you for this
meeting and welcome to everyone here.
I met with the North Carolina delegation earlier this
morning. They came to my office. Are any of them present?
It was a huge organization or a huge group, and I was happy
to see them because this is something that I first got
introduced to back in 1998 with my own grandmother.
I think it is very important. There are very few
opportunities where the head and the heart kind of align in
areas of public policy in such a compelling way as this issue.
Clearly, if you have been touched by someone who has had
Alzheimer's, you know the personal drain that it has. I was a
caregiver, along with my mother and my two aunts, with my
grandmother. Trying to educate myself so that we could become
better caregivers was a very important part of what I was
doing, and a lot of that you understand, just how our instincts
for providing care are almost the opposite of what you really
need to do to provide care that is in the best interest of the
person suffering from Alzheimer's, so we have to spend far more
resources today, until we can find a cure, on trying to provide
the support and the education that the caregivers need so that
you can enrich their lives and they are in a better position to
enrich the lives of people who suffer from Alzheimer's.
I, for one, intend to be an advocate. I have a purple tie
on. I have also got purple socks on, by the way, and a pen.
I want to start--actually, Mr. Pierce, I just want to thank
you. I am a relatively new Senator. I have only been here for
about 15 months, and people always ask, what is it like being
in the Senate? I always struggle to come up with ways to
describe it, but from this point going forward I am just going
to tell them it is happily combative. That is a good phrase.
Mr. Petersen--and I want to come back to you, Mr. Pierce,
but I want to start with you, Mr. Petersen. The chairlady asked
you how that additional billion dollars will be spent. I
supported and voted for the funding that increased the spending
by 60 percent.
Can you give me some sense of how that additional money
will be immediately deployed? You were talking about funding
clinical research for clinical trials for potential promising
treatments or cures. How is that money that has been
appropriate now--how is that going--what precisely are we going
to see in terms of net new developments?
Dr. Petersen. Thank you for that comment.
I think if you view the program on research from different
perspectives, there is the basic science part, there is a
clinical diagnostic part, and there is a treatment part.
On the basic science diagnostic part, while we know a lot
about this disease, the plagues and the tangles, the proteins
that cause them, it is much more complicated than that. I
referred to the conference last week at NIH, where people
really focused on the fact that this is a multifactorial
process. It is going to be a long haul, but we need to
understand the multiple interacting parts, so that is on the
basic science side.
On the clinical diagnostic side, David alluded to the fact
that we can make the diagnosis now much earlier in the disease
process than we could five to 8 years ago. We can now image the
proteins that we think are actually causing the disease in the
brain in normal people while they are asymptomatic. That
affords us an opportunity to intervene at that point in time
with effective therapies, so on the therapeutic side, the third
prong, the clinician and the investigators who are designing
the clinical trials now can define their population of
participants to be involved in that clinical trial much more
effectively, so if I have a therapy that is aimed at this
amyloid protein that makes the plaques, I can now image those
people to make sure they have the amyloid protein.
I think now with increase awareness and funding across the
line in all three prongs we will be able to be much more
effective and much more efficient at designing clinical trials,
and getting effective therapies out there, at the same time
looking more broadly as to the multiple components that
contribute to this disease.
Senator Tillis. Thank you.
Ms. Baron, I am going to speak with you. I was in the
legislature in North Carolina before I came here. If you do not
mind, I am going to have my office contact you to talk a bit
about the work that you have done, particularly with Missouri
Medicaid, and talk about some things that may be relevant to
some of my colleagues that are still in the legislature and
working together with our Department of Health in North
Carolina.
Mr. Pierce, in my remaining time, I would like to ask you
to expand a bit, I think, on a comment you made in an interview
about the airplane model for caregivers. Can you tell me a
little bit about that?
Mr. Pierce. Yes. It is a--you know, on the airplane, they
always say, when the oxygen masks come down, put on your own
mask first before helping others, and that is a pretty potent
image for caregivers taking themselves and us taking care of
them.
The stresses and strains and exhaustion, especially
combined with, frequently, the age of caregivers, makes them
incredibly vulnerable, and perversely, the more loving and
devoted they are, the more vulnerable they are because the less
they are willing to take a step away, and sometimes it takes
almost an intervention, and this is the kind of counseling that
a doctor or whoever, someone from the Alzheimer's Association,
can give.
As you were saying, it is kind of intuitive almost to say
to someone, ``You want to take care of your husband? Go away
for a few hours.'' That is because then you will be able to be
restored and be renewed, so that is where that image comes
from. Of all the diseases, this is the one because the person
we are caring for is losing their ability to care for
themselves and their judgment and everything else, and the
horrible stories of wandering and--you know. We have to be the
ones to care for the caregivers.
Senator Tillis. Thank you.
Thank you, Madam Chair.
The Chairman. Thank you, Senator.
Senator Whitehouse.
Senator Whitehouse. Thank you very much, Chairman Collins,
and thank you for how relentless you have been in this cause
for so long. I really appreciate it.
My equally relentless Rhode Island advocates led by Donna
McGowan, who is terrific, and the things that were--the words
that came up the most often in our conversation were care
planning, and Ms. Baron, your conversation about how this works
clearly takes us into that area of care planning.
Dr. Petersen, you inhabit the health care system as a
practitioner. It is a system in which reimbursement has huge
consequences. In a fee-for-service system, care planning can be
very hard to fit into a reimbursable mode for a doctor, and as
we move away from fee-for-service, there is more opportunity, I
think, because of the inherent cost savings that are possible
from good care planning, to have that fit better into the
medical model.
I would be very interested in your thoughts, not only now,
but if you wanted to take it as a question for the record and
on reflection get something back in writing to the Committee,
on: What are the things that we could best do in Congress in
changing the way payments are made so that care planning
becomes a built-in, baked-in part of the treatment for all
Alzheimer's payments?
I think we are moving in the right direction. Maybe what
you will say is just keep doing what you are doing and move
more away from fee-for-service and more toward results-based
payment, outcomes-based payment, but what are your thoughts on
that?
By the way, Mr. Pierce, you played a lovely doctor on TV,
so I do not mean to leave you out, but you did not need
reimbursement in the same way.
Dr. Petersen. He was a psychiatrist, though, right?
Senator Whitehouse. Exactly. Dr. Petersen.
Dr. Peterson. Thank you, Senator Whitehouse, for that
question.
It is important, and it comes down to, unfortunately, an
aspect of fee-for-service in terms of reimbursability, but I
think it also is incumbent upon us as practitioners to ask our
systems: Who best can provide this care? It may not be the
doctor. It may not be the physician in the office. It may be
the rest of his care team, and I think the HOPE Act speaks
toward that.
If we can, in fact, document what is going on in the office
and does that entitle this patient then to a whole host of
services that hopefully would be reimbursable because one of
the things we are doing with the Advisory Council on the
National Plan--in this phase, we have been focusing on research
early on, and I think reasonably successful. A lot of work to
do, but we are also now turning to care and services, so we are
in the planning stages for a summit on care and services. What
is being delivered? What is out there? What does the evidence
show us? As Lisa and Polly have demonstrated to us, that in
fact you provide these services; they are cost-saving to the
system down the road, so we are trying to take a look at that
from the National Plan perspective of: How can we document
that? How can we come back with recommendations to Congress--if
you do this it is going to save this down the road, and most
importantly, it is going to help our families and our
individual patients?
I think all of our systems need to take a relook at this
whole issue of what we can do for planning beyond the
diagnosis. Now here is what we can do for the benefit of the
patient, family, and the system.
Senator Tillis. Good. Well, I would be really interested in
staying in touch with you on that subject.
We have two particularly good primary care groups in Rhode
Island--Rhode Island Primary Care and Coastal Medical. Both of
them are operating as ACOs, and as they do that, they are able
to engage with their patients in a completely different way and
do things that do not require medical intervention so much as
social intervention.
Dr. Petersen. Right, right.
Senator Tillis. Because it saves money on the medical
intervention, they can go ahead and do it and make it succeed.
My favorite example is a community health center that
bought a guy an air conditioner because in the summer he was
coming to cool off in the emergency room and it was running up
tens of thousands of dollars, and they finally said, well, for
$199 we can give the guy an air conditioner. He can watch TV,
cool at home, and sure enough, they saved it 50 times over, and
it is trying to get the care planning into the mode where
primary care physicians are building that in that I think is
going to be----
Dr. Petersen. And demonstrate value to the primary care
physician.
Senator Tillis. Precisely.
Dr. Petersen. We are saving you time. We are making it
better for your patients, and develop that system.
Senator Tillis. Stay in touch. Thank you.
Dr. Petersen. We will do that. Thank you.
The Chairman. Thank you, Senator.
Senator Donnelly. Thank you, Madam Chair, and thank you for
constantly making sure this issue is directly in front of us
and for pushing all of us on a constant basis to crack the code
on this.
I want to thank all of my friends and neighbors from
Indiana who have come all the way out here to be part of this,
who I met with this morning. They are waving at me from the
back.
I am not paying your gas on the way home. I assure you of
that, but for you to be here and to be visible and to be a sign
of how important this is, is absolutely critical, and that goes
to all of you as well--that you help us to make better
decisions, and Ms. Baron, one of the things I wanted to ask you
about is the Alzheimer's Association recently released a report
noting that Americans provided 18.1 billion hours of unpaid
care to family. Can you talk a little bit about how the
families you work with try to balance out the caregiving and
the obligations they have at their job?
Ms. Baron. Sure. I think one of the things that we really
do when we go into homes is we get to know the families and the
things with which they are dealing, and of course, like you
were talking about, things like recidivism, tardyism, lack of
productivity at work are huge issues for family, but getting to
know them and connecting them to resources is really key.
I will give you an example. A woman who works at, let's
say, Centene, and she gets up in the morning at 5 so she can
dress her mother and bring her to adult day care by 7:30 and
then get to her job by 8:30.
Once we have gone into the environment, we can see and find
out: Is there an adult day care that is close? Do they have
transportation? We will actually connect them to that adult day
care and set up the transportation so she is not doing that
herself.
It is a very customized service for each individual family,
and the caregivers we are serving are absolutely burnt out.
They do not need another list. They do not need another flyer.
They do not need another piece of information. They need
someone that is actually going to connect them to the resources
without them doing it.
Senator Donnelly. Do you see many families that have access
to paid family leave to help with this situation?
Ms. Baron. No. I would say that most of the families that
we are serving are much older, at least 65 and above for the
care receiver, and the caregivers, there is a very small
portion of people that are actually taking advantage of that.
Senator Donnelly. Okay.
Ms. Baron. We do have a fair number of people, though, that
have had to take time off, and they actually lose their job and
then go back into the career mode.
Senator Donnelly. Dr. Petersen, can you give us a brief
update on the State of the science of this disease?
I am from Indiana. Lilly has worked for nearly 30 years on
trying to crack the code on Alzheimer's, has worked on or has a
product now that targets amyloids, and I know that there are
also researchers who are working on the Tau hypothesis to learn
more about the Tau tangles.
Can you tell me a little bit more about these two theories,
how this is moving along, where you see promise to stop the
plaque or to move us forward?
Dr. Petersen. Thank you very much, Senator Donnelly, for
that insight into the pathophysiology of the disease.
Alzheimer's disease is defined as a plaque and tangle
disease. How do you make that diagnosis? Well, prior to now,
when the patient died, passed away, you looked at the brain
under the microscope. You stained the brain. If it has plaques
made of this amyloid protein, has tangles made of this Tau
protein, you have the disease.
Fortunately, now we can image those two proteins in life,
but as I indicated earlier, at the conference last week at NIH,
plaques and tangles are important, but there are other
proteins. Something called alpha-synuclein which we see in
Parkinson's disease, something called TDP-43 which affects
memory, vascular disease, little strokes, blood vessel
problems--all contribute to this complex clinical picture, so I
think companies like Lilly are at the forefront of not only
coming up with therapeutics for the amyloid protein, for the
Tau protein, but also the diagnostic measures of seeing them in
life in people.
I think where the field is moving is toward a better
characterization of these multiple pathologies. Plaques and
tangles, clearly very important, that is Alzheimer's disease,
but there are other contributing factors. We are now getting
the capability to be able to identify those other elements in
the pathologic process and, hopefully, design therapies to get
into them as well, so as I indicated earlier in my remarks, I
think now we can refine clinical trials to those specific
participants who have that pathologic characteristic.
It was not too many years ago, in fact, Lilly was one of
the companies that was at the forefront and did a very major
study with solanezumab, one of their antibodies aimed at
amyloid, only to find out after the fact that in sub-subgroups
of people participating in the study, up to 30 percent of them,
did not have that protein in the brain to start with, so if you
have got a drug aimed at that protein, you are dead in the
water from the get-go.
Now, with refined biomarker and imaging, we can be very
specific of the people we are trying to treat with a specific
intervention. That is where we are headed.
Senator Donnelly. Well, to all of you, to those who provide
care every day, thank you. It is God's work that you are doing.
Doctor, for the research you are doing to crack the code,
we are incredibly grateful.
Mr. Pierce, for being the face of this, for being out
front, for bringing attention to this to try to end this, we
are so grateful, and to all of you who have come, you are the
ones who are the face of this every year to all of the members
here, to all of my friends, and we could not do this without
you, so God bless you, and travel home safe. Thank you so much.
Thank you, Madam Chair.
The Chairman. Thank you.
Senator Warren.
Senator Warren. Thank you, Madam Chair, and thank you for
all the hard work that you have done to draw attention to the
impact of Alzheimer's on families all across this country.
I would like to look at another aspect of Alzheimer's. The
Alzheimer's Association estimates that in 2016 5.4 million
people will be living with Alzheimer's and that more than two-
thirds of them will be women. For a long time scientists
thought that this lopsided figure was solely because women live
longer than men, but new research suggests that biological and
genetic sex differences may contribute to the higher disease
incidents among women as well.
Now it seems pretty obvious that researchers should be
looking for sex differences when they study Alzheimer's. The
1993 NIH Revitalization Act requires the enrollment of women in
clinical research, and today about half of all trial enrollees
are women, but according to a report that I requested from the
nonpartisan Government Accountability Office that was published
last fall, there is not much information about what that
breakdown looks like inside particular NIH institutes or
disease areas like Alzheimer's, and despite the law, we also do
not know whether researchers are actually complying with the
requirement to analyze sex differences in their studies.
Dr. Petersen, could you explain why it is important to
consider sex as a variable in medical research in Alzheimer's
disease?
Dr. Petersen. Thanks, Senator Warren.
I think that is an important issue, and I think it is
receiving increasing attention. There are entities within the
Alzheimer's Association, other advocacy groups that are really
focusing on women's issues in Alzheimer's disease. There are
even women, Researchers Against Alzheimer's disease, led by
Robbie Brinton at the University of Southern California.
It is an important issue, and it does vary over time. There
are more women with Alzheimer's disease than men partly because
they live longer, but as you imply, there are biological
explanations. The hormonal interaction of certain genetic
characteristics and perhaps treatment characteristics actually
do fluctuate over time.
Remember the Women's Health Initiative?
Senator Warren. Yes.
Dr. Petersen. It implied that maybe if you treat women with
estrogen after menopause that will protect them against
Alzheimer's. Turned out that when you treated women with
estrogen later in life there was actually an increased risk
factor for Alzheimer's disease, so it may be that there is a
bimodal type of an effect. If you treat earlier, it is
protective. If you treat later, it is not protective. That
implies not only is there a sex, interaction but there may be a
genetic interaction as well, so apolipoprotein E4 is a risk
factor for Alzheimer's disease. Normal protein. We all have it.
Comes in three varieties--E2, E3, E4. The E4 variety portends
an increased risk for Alzheimer's disease. It is about equally
distributed in men and women, but it plays out differently in
men than in women, and that may in fact be due to the hormonal
influence of estrogen, estradiol, progestin--the treatments
that are used for treating individuals with Alzheimer's
disease, trying to protect, so it is a very active area of
research. At Mayo, we have a group that is looking at women's
issues in health, women's issues in Alzheimer's disease as
well. I think it is going to play out more, hopefully, more
productively in the next few years.
Senator Warren. Thank you very much. That is really very
helpful, Dr. Petersen, and reminds us that there may be whole
dimensions of exploration here when we are looking at sex-
linked characteristics that may be very important.
Senator Collins and I have been working on this issue
together, and earlier this week we joined with our colleagues
to introduce the Advancing NIH Strategic Planning and
Representation in Medical Research Act. It is a little bit of a
mouthful, but you get what it is about.
The new bill would ensure that more women are included in
clinical research and that detailed information about
enrollment in trials by women and minorities be shared
publically. Our bill would also help ensure that sex-specific
data and analyses will actually be conducted and reported, and
that sex is considered as a potentially important variable in
pre-clinical studies, and just this morning, the Senate Health
Committee reported that bill to the floor of the Senate, so we
are starting to see some movement on this.
Yet, there is still much work to do. Real progress on
Alzheimer's and other brain-related diseases and injuries
require more funding from NIH, and this is truly an area where
we get what we pay for, and right now we are not investing
enough to stop Alzheimer's. We must do better on this.
Dr. Petersen. Thank you very much. Thank you.
Senator Warren. Thank you. Thank you.
I just do want to add one point on this, and that is to
express my gratitude to Senator Collins for her leadership on
the Advancing NIH Strategic Planning and Representation in
Medical Research Act because this is an important step in
making sure that women are full participants in medical
research.
Over time, this will make a huge difference in the lives of
women around the country and around the world, and it has the
potential to speed health breakthroughs for women who struggle
with, or who are at risk for, Alzheimer's. It is an example of
what the Senate can do with extraordinary leaders and when we
try to work together on both sides of the aisle.
I just want to say again thank you to all of you for the
work that you do by coming here and pushing us, and thank you
for your leadership. Thank you, Senator Collins.
The Chairman. Thank you, Senator Warren.
Senator Kaine.
Senator Kaine. Thank you, Madam Chair, and thanks to all
the witnesses.
To the Virginians who are here, closer drive than Indiana,
I will give you that, but I was so thrilled to meet with you
earlier.
In Virginia, there are 455,000 family caregivers who
provide 519 million hours of care for individuals with
Alzheimer's. My wife is one, a caregiver for a sibling who was
diagnosed with early onset Alzheimer's at age 55, and I have a
lot of questions from staffers that are kind of Senator
questions, but I really just want to ask a family member
question on research, Dr. Petersen. Senator Warren asked one
that I was going to get into, the overwhelming predominance of
diagnoses among women, but the other two I am interested in
are:
Early onset Alzheimer's, what is the current State of the
research on whether it is the same or whether it is different
and why it manifests earlier?
Then the second question I would like you to address is it
is very promising to know that you do not have to wait for an
autopsy now to be able to determine in an asymptomatic person
that they might have the conditions that would lead to
Alzheimer's. How quickly could you see that technology moving
so that there would really be a widely accessible test, and how
early could people get that in their life so that they could
get information about whether they might develop symptoms later
on in their lives?
Dr. Petersen. Two very important questions. Early onset
Alzheimer's disease tends to be more genetically loaded.
Doesn't mean that everybody with early onset has one of those
autosomal dominant mutations, which means that if it is in your
family you have a 50-50 chance of getting it; if you get the
mutation, you get the disease. That is much more common on
young-onset people--fortunately, relatively uncommon.
Nevertheless, there are some very important
investigations--one going on in St. Louis at Washington
University, the DIAN Study, another out of Banner Health in
Phoenix with a family down in Colombia in South America,
looking at people who have those genetic mutations.
Why they are very important is they are relatively pure
expressions of the disease such that we can look at the biology
of what happens in those brains, and most of those early onset
genetic mutations are related to this amyloid protein, so
hence, we think that this amyloid protein may be not the end-
all/be-all, but is critical in the pathway, so early onset
disease is devastating to individuals and families, but we are
making some progress in genetic trials as well in those
individuals--so-called adaptive trial designs looking at new
drugs in a short period of time in those families that express
those early onset features.
I think what we learn about early onset will clearly
translate to the vast majority of the other 99 percent of late-
onset, but I think they are going to definitely be related.
Whether they are exactly the same disease I think remains to be
seen, but there are a lot of overlaps.
The second issue with regard to biomarkers and trying to
identify the disease early in the process. Critical for the
field.
I do not want to overState things, however, and say that,
``Gee, if you are 68 years old, normal, have a positive amyloid
imaging scan for amyloid brain, you are going to get
Alzheimer's disease, clinically impaired, and blah, blah . .
.'' Probably, but we do not know today, tomorrow, 5 years, 10
years, or ever in your lifetime, so longitudinal observational
studies are critical to answer that question, but along the
lines of what about getting these early diagnostic scans
covered, right now they are not covered. CMS has said, we are
not going to cover amyloid scans. The third-party payers, the
commercial payers out there, they will not go that way if CMS
does not go that way, but CMS and the Alzheimer's Association
have launched a large study called IDEAS, a $100 million study
to look at the utility of amyloid imaging in clinical practice,
so they are going to pay for some 18,000-18,500 amyloid scans
in clinical practice across the country to determine the
utility. Is it worthwhile to know this information on the
outcome of this particular patient? Critical question.
I applaud CMS and the Alzheimer's Association for going
ahead with this because this is a vital issue for the field
right now and we need to know that information, so proactively,
I think the government is doing it.
Senator Kaine. Keep up your good work, and we will follow
that study very closely. Thank you.
The Chairman. Thank you, Senator.
Senator Blumenthal.
Senator Blumenthal. Thank you, Madam Chairwoman, and thank
you for having this hearing.
Thank you to all the advocates and activists who are here
today, particularly if you are from Connecticut. We have a very
active contingent in Connecticut, and I am not going to
embarrass you by asking you to stand, but I appreciate all your
great work. Mr. Pierce, as someone who has dealt personally
with these issues, what do you think is the single most
important or maybe three most important things that we can do
in Congress, at the Federal level?
Mr. Pierce. Fund, fund, and fund.
Senator Blumenthal. You know, in my profession--I am a
lawyer.
Mr. Pierce. Oh, okay.
Senator Blumenthal. We are taught never to ask a question
when you do not know what the witness is going to answer.
If it is a friendly witness, and I anticipated that would
be your answer, but I apologize for interrupting. Please go
ahead.
Mr. Pierce. Well, that is the essence of what we have bene
saying for, oh, I do not know, 30 years. We know more and more,
and we know more and more because of the research we have been
able to do, and we have been able to take better care and have
incredible ideas blossom because people are no longer living in
ignorance because we have been able to spread the word, but
there are still vast parts of this country where people do not
know enough about this disease, where the stigma exists, and
there are still vast areas of research that just are not being
touched.
Although, thank God we have more funding for research, we
are also losing not only research but losing researchers. If
there is no funding for research, then the kids coming out of
medical school go where the money is, and they go into plastic
surgery, which is fantastic, but it is not the kind of need
that we are expressing here, so this is where all these funds--
they have multiple effects, and so I do not say it jokingly at
all. It really is; that is where we find ourselves, that our
job is to express the need and say this is where we are and how
important it is, and that is the answer--is to fund it.
Senator Blumenthal. Do you think the Federal Government
should, in effect, fund research outside of its own facilities
or organizations, and how tightly or specifically should
restrictions be put on what the funding is used to do?
Mr. Pierce. You know, all I can say--I am probably not
qualified to answer that, first of all, but what I would say,
based on my time on the council, is I understand that you guys
cannot fund without metrics and without specifics, and that our
job is and any researcher's job is to provide you with the
information that you can make an informed decision and say
there is a reasonable chance, but the one thing we do know is
we do know what will happen if we do not fund research, so that
is a definite.
Senator Blumenthal. I would invite other members of the
panel to answer those same questions.
Dr. Petersen. I think I can contribute to what David is
saying with regard to leveraging funding, so should the Federal
Government fund areas outside? I think it is important for the
Federal Government to think about options of leveraging funding
against other sources, so if somebody comes in with a grant
application saying if the Federal Government can fund $5
million of this, I will raise $5 million or $10 million.
Also, do this internationally. This is not a U.S.-specific
disease process, and so in the National Plan we have specific
metrics to actually look at our involvement internationally, so
to the extent we can leverage our funding with funding from
other countries I think would be mutually beneficial.
Senator Blumenthal. Very good point.
Let me ask another question, and this question too I think
I know how you will answer, but I think it is a question that
we need answered so that we can be better advocates for you in
fighting for funds, funds, funds.
Have you seen significant instances of overspending,
imprudence, waste in the allocations of funding? Are there
instances where stronger metrics or scrutiny are necessary in
supervising these expenditures?
Dr. Petersen. I mean, I can share a couple of thoughts on
that.
With the last several years with the very, very tight pay
lines at NIH, only the very best research and the most sort of
conservative research gets funded. Sort of the sure bets. If
you are only funding 8 percent or 5 percent of all the
applications, they better pay off, so if I am a funder, if I am
at NIH or a review committee, I want to review and grade
positively those projects that are going to pay off.
What you are missing, though, are the long shots--the high
risk, high payoff, but they are high risk, so a lot of those
are going to fail, and they may be the young researchers as
well, so the new kids who come in with a great idea about we
might make inroads to this disease, but they go elsewhere or
they do not get funded.
I think by relaxing the pay line and clearly with the $350
million that the National Institute on Aging, the pay line for
grants in Alzheimer's disease have gone from 8 percent to 18
percent, a doubling, so you are going to get more of these
grant applications, I think, that have that little bit of risk
around the edge but may be huge contributors to the field.
I think that is the tradeoff we get with a tight funding
line versus a relaxed funding line.
Senator Blumenthal. I would just suggest amending your
answer by substituting for the word ``risk'' maybe the word
``courage'' or ``vision'' because the risk is simply failure,
but failure is part of research. If it were easy to do the
research without risk, without courage, without vision, then
probably the research would not be necessary in the first
place.
I want to thank you for that answer. I will interpret it as
an answer of ``no'' in response to my question that we are
spending wisely and well, and we should simply do more of it.
Thank you, and maybe I should amend my own comments. Instead of
the word ``spending,'' say ``investing'' because it really is
investment. Thank you.
The Chairman. Thank you, Senator. Thank you.
Before I give some closing comments, I want to turn to
Senator McCaskill and Senator Tillis, who have been here
throughout the entire hearing, to see if they have any closing
comments that they would like to make.
Senator McCaskill. I just think you cannot get so
downtrodden that you do not see the progress, and I think it is
important that all of you pat yourselves on the back because
both the witnesses, who represent a variety of different
perspectives when it comes to this problem, and then all of you
out there that have decided to make this part of your life, you
are making progress. We are making progress, and we will make
you a deal. We will not quit if you will not quit.
The Chairman. Thank you, Senator.
Senator Tillis.
Senator Tillis. Thanks again, Madam Chairwoman, for holding
this committee hearing.
Thank you all for being here. You know, when I was talking
in my comments before I asked a question about where the head
meets the heart, what I think is very important for people to
understand is in doing a good thing for these victims we are
going to save billions and billions of dollars, which as we
proceed to a treatment and a cure for this disease will let us
accelerate the pace for diseases that do not necessarily have
as broad of an impact.
Mr. Pierce, when you answered the question ``Fund, fund,
fund,'' I think it is because we can save, save, save. We can
save lives, we can save heartbreak, and we can save money. I
cannot imagine any more compelling case for focusing on working
on accelerating a cure and accelerating more sophisticated,
broader-based options for caregivers.
Mr. Petersen, the last thing I will leave you with is one
thing that I would ask you to do. I want to continue to work
with the Chairwoman and the members of this Committee to
advocate for more funding.
I would encourage your and your colleagues to go back and
take a look at the environment that you operate within that has
evolved over time, and maybe at a time there were good policies
that were set forth by the Congress that no longer make sense
or in combination with other decisions. You know that if there
is any waste, it is as likely to be because of inefficiencies
we have imposed on you as it is any sorts of variabilities that
you have to deal with in research.
I think it is very important to come before this
Committee--and I often say this in other committees that I am
in. Put a mirror where the witness stand is right now and make
us reflect on decisions that we have made that are
inefficiencies built into your processes at the expense of that
money being freed up to accelerate a cure or better strategies
for caregiving. You owe that to us to do that, and we need to
be open to criticism and some opportunities to reform the
environment that you operate in so that we make sure every
possible dime can be spent to its best and highest use.
I assume with that knowing glance there has got to be a few
examples out there. I will not ask you to respond, but I would
like to make sure that you know my office is wide open to
looking for those opportunities to help us free up even
resources that are already invested but that are not being
invested for their most productive use.
Thank you.
The Chairman. Thank you very much, Senator.
I want to thank our exceptional panel of witnesses today.
You have deepened our understanding of the challenge that we
face, and each of you presented exceptional testimony.
When I look out at that sea of purple, to me, it represents
progress, determination, and hope.
When I was on my way to vote this morning, one of my
colleagues on the subway asked me if I were wearing purple
today because of Alzheimer's, and I told him that that was in
fact the case, and as those of you who were here last year for
our hearing, and the year before and the year before and the
year before, may recognize, it is the same suit.
I made a vow many years ago that I would always wear this
suit when I presided over, or participated in, a hearing or
major event involving Alzheimer's.
Senator McCaskill. I was wondering about those big shoulder
pads.
The Chairman. Well, as my colleague has so tactfully
pointed out----I really would like to give this suit to
Goodwill, so I cannot retire this suit until we retire
Alzheimer's.
Thank you, so please be assured of our commitment. It was
wonderful to have so many Senators taking time today to come by
this hearing. I think that should encourage all of you, and I
thank you all for your advocacy.
To the panel, I will say that the hearing record will be
open until Friday, April 15th, so you may receive some
additional questions.
Thank you so much for your participation. Safe travels to
all the advocates who have come from around the country.
This hearing is now adjourned.
[Whereupon, at 4:11 p.m., the Committee was adjourned.]
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APPENDIX
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Prepared Witness Statements
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