[Senate Hearing 113-798]
[From the U.S. Government Publishing Office]
S. Hrg. 113-798
THE NATIONAL PLAN TO ADDRESS ALZHEIMER'S DISEASE: ARE WE ON TRACK TO
2025?
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HEARING
BEFORE THE
SPECIAL COMMITTEE ON AGING
UNITED STATES SENATE
ONE HUNDRED THIRTEENTH CONGRESS
FIRST SESSION
__________
WASHINGTON, DC
__________
WEDNESDAY, APRIL 24, 2013
__________
Serial No. 113-4
Printed for the use of the Special Committee on Aging
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Available via the World Wide Web: http://www.fdsys.gov
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U.S. GOVERNMENT PUBLISHING OFFICE
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SPECIAL COMMITTEE ON AGING
BILL NELSON, Florida, Chairman
RON WYDEN, Oregon SUSAN M. COLLINS, Maine
ROBERT P. CASEY JR, Pennsylvania BOB CORKER, Tennessee
CLAIRE McCASKILL, Missouri ORRIN HATCH, Utah
SHELDON WHITEHOUSE, Rhode Island MARK KIRK, Illinois
KIRSTEN E. GILLIBRAND, New York DEAN HELLER, Nevada
JOE MANCHIN III, West Virginia JEFF FLAKE, Arizona
RICHARD BLUMENTHAL, Connecticut KELLY AYOTTE, New Hampshire
TAMMY BALDWIN, Wisconsin TIM SCOTT, South Carolina
JOE DONNELLY Indiana TED CRUZ, Texas
ELIZABETH WARREN, Massachusetts
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Kim Lipsky, Majority Staff Director
Priscilla Hanley, Minority Staff Director
CONTENTS
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Page
Opening Statement of Chairman Bill Nelson........................ 1
Prepared Statement........................................... 58
Opening Statement of Ranking Member Susan M. Collins............. 1
Prepared Statement........................................... 60
PANEL OF WITNESSES
Ashley Campbell, Testifying on Behalf of Glen Campbell and Family 3
Don Moulds, Ph.D., Acting Assistant Secretary of Planning and
Evaluation, United States Department of Health and Human
Services....................................................... 11
Ronald Petersen, MD, Ph.D., Cadieux Director of the Mayo
Alzheimer's Disease Research Center and the Mayo Clinic Study
of Aging....................................................... 23
Michael D. Hurd, Ph.D., Director, RAND Center for the Study of
Aging.......................................................... 34
APPENDIX
Prepared Witness Statements and Questions for the Record
Ashley Campbell, Testifying on Behalf of Glen Campbell and Family 6
Don Moulds, Ph.D., Acting Assistant Secretary of Planning and
Evaluation, United States Department of Health and Human
Services....................................................... 13
Ronald Petersen, MD, Ph.D., Cadieux Director of the Mayo
Alzheimer's Disease Research Center and the Mayo Clinic Study
of Aging....................................................... 25
Questions submitted for Dr. Petersen......................... 62
Michael D. Hurd, Ph.D., Director, RAND Center for the Study of
Aging.......................................................... 36
Questions submitted for Dr. Hurd............................. 64
ADDITIONAL STATEMENTS FOR THE RECORD
Alzheimer's Association.......................................... 69
Alzheimer's Foundation of America................................ 74
Jeffrey L. Cummings, M.D., Sc.D., Director, Cleveland Clinic Lou
Ruvo Center for Brain Health, Camille and Larry Ruvo Chair for
Brain Health, Cleveland, OH.................................... 82
George Vradenburg, Chairman, USAgainstAlzheimer's................ 84
THE NATIONAL PLAN TO ADDRESS
ALZHEIMER'S DISEASE: ARE WE ON TRACK TO 2025?
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WEDNESDAY, APRIL 24, 2013
U.S. Senate,
Special Committee on Aging,
Washington, DC.
The Committee met, pursuant to notice, at 2:11 p.m., in
Room 106, Dirksen Senate Office Building, Hon. Bill Nelson,
Chairman of the Committee, presiding.
Present: Senators Nelson, Whitehouse, Manchin, Blumenthal,
Donnelly, Collins, and Ayotte.
OPENING STATEMENT OF SENATOR BILL NELSON, CHAIRMAN
The Chairman. Good afternoon. We are going to do things a
little bit different here today. Ms. Campbell, if you would
come on up, after the opening statements, in order to
accommodate the Campbells' schedule, we will have them testify
first and answer questions so that they can get on to the
airport. I certainly hope you are not experiencing a lot of the
delays at the airport like everybody else is.
I want to really thank everybody for being here and this
show of support and the enthusiasm that has been generated and
for all of the purple that is displayed today, we want you to
know how much we appreciate it.
I want to turn to our Ranking Member, Senator Collins, for
her to make the opening statement.
OPENING STATEMENT OF SENATOR SUSAN M. COLLINS
Senator Collins. Mr. Chairman, first of all, I cannot tell
you how grateful I am that you have called this very important
hearing to examine the enormous toll that Alzheimer's disease
is taking on our nation and to assess the progress since the
enactment of the National Alzheimer's Project Act in 2011.
Along with former Senator Evan Bayh, I am proud to have been
the sponsor of that law, known as NAPA.
Alzheimer's is a terrible disease that exacts a tremendous
personal and economic toll on both the individual and the
family. As someone whose family has experienced the pain of
Alzheimer's time and time again, I know there is no more
helpless feeling than to watch the progression of this
devastating disease. It is an agonizing experience to look into
the eyes of a loved one and receive only a confused look in
return. It is equally painful to witness the emotional and
physical damage inflicted on many family caregivers, exhausted
by an endless series of 36-hour days.
And my family is by no means alone. An estimated 5.2
million Americans have Alzheimer's, more than double the number
in 1980. Based on the current trajectory, as many as 16 million
Americans over the age of 65 will have Alzheimer's disease by
the year 2050.
Moreover, in addition to the human suffering it causes,
Alzheimer's costs the United States more than $200 billion a
year, including $142 billion in costs to Medicare and Medicaid.
This price tag will increase exponentially as the baby boom
generation ages. If nothing is done to stop or slow this
disease, Alzheimer's will cost the United States an astonishing
$20 trillion over the next 40 years, according to the
Alzheimer's Association.
It is estimated that nearly one in two of the baby boomers
reaching 85 will develop Alzheimer's. As a consequence, chances
are that the members of the baby boom generation will either be
spending their/our golden years with Alzheimer's or caring for
someone dear to them who has it. In many ways, Alzheimer's has
become the defining disease of my generation.
A strong and sustained research effort is our best tool to
slow the progression and ultimately prevent the onset of this
disease. If we fail to change the current trajectory of
Alzheimer's disease, our country will face not only a mounting
national health care crisis, but an economic one, as well.
Despite all the alarming statistics, until now, there has
been no national strategy to defeat Alzheimer's and our efforts
to combat the disease have lacked coordination and focus, and
that is why the National Alzheimer's Project Act, or NAPA,
creates a strategic National Plan for combating Alzheimer's.
This National Plan, which will be updated annually, will help
us focus our efforts and accelerate our progress toward better
treatments, a means of prevention, and ultimately even a cure.
The annual review process required by the law is intended
to help us answer an important straightforward question: Have
we made satisfactory progress this year in the fight against
Alzheimer's? And that is why we are here today and why I am so
grateful to our Chairman.
The primary goal of this hearing is to assess the progress
that we are making. The goal of the National Plan to Address
Alzheimer's Disease, the plan which was released last May, was
to, quote, ``prevent and effectively treat Alzheimer's disease
by the year 2025.'' It is my understanding that the next
version of the National Plan will be released next month. So
this is the perfect time for a progress check. I personally am
convinced that we need to more than double the amount of money
that we are investing in Alzheimer's research in order to
achieve significant progress.
I want to thank all of our witnesses who are here today,
but particularly Glen Campbell and his family. It was wonderful
to hear him play many of my favorite songs. His guitar skills
are second to none and he still has that wonderful voice. And
it was wonderful to be honored to meet him, his wife, and
daughter. And I am also grateful to the other experts who have
joined us today. Issues related to Alzheimer's clearly are near
and dear to my heart and I look forward to hearing from our
witnesses.
Thank you, Mr. Chairman.
The Chairman. Well, and Senator Collins, thank you for all
your hard work in this area.
It is shocking that, today, one in three seniors will die
with Alzheimer's. And as the baby boomers age, this fact is
going to confront us all the more. You take a State like mine,
Florida, where we have a higher percentage of the population is
elderly, it all the more will be accentuated.
And we have got places all over the country that are
working on this disease. Senator Collins and I want to focus in
on this today, and we want to give some additional heft and
lift to what all of you out there are doing.
Now, today, there are over 900 of you fanning out across
Capitol Hill and we are very grateful for your tireless efforts
on behalf of this issue. And for the Alzheimer's Association,
including former Congressman Dennis Moore, we are grateful for
all of you being here today.
Now, I said we are going to do this differently to
accommodate the Campbell family so they can get to the airport.
So, first, we are going to hear from Ms. Ashley Campbell, the
daughter of Glen and Kim. She is a recent graduate of
Pepperdine. Her father is a five-time Grammy winning country
singer. During his 50 years of show business, he has recorded
some of the most beloved songs of his generation: ``Gentle on
My Mind,'' ``Rhinestone Cowboy,'' more than 70 albums. And he
has won numerous accolades for his music: The Academy of
Country Music's Entertainer of the Year Award, three Grammy
Hall of Fame Awards, and a Grammy Lifetime Achievement Award.
He was also inducted into the Country Music Hall of Fame in
2005.
A couple of years ago, Mr. Campbell was diagnosed with
Alzheimer's. Mr. Campbell, with his wife, Kim, who is with us,
and his children, Ashley, Cal, and Shannon, have decided to
face his illness head on. And so we want to hear from Ms.
Ashley Campbell first.
STATEMENT OF ASHLEY CAMPBELL, ON BEHALF OF GLEN CAMPBELL AND
FAMILY
Ms. Campbell. Thank you, Chairman Nelson and Senator
Collins and members of the committee for the opportunity to
testify today, and thank you for holding this hearing on
Alzheimer's disease and the National Plan.
Before my dad was diagnosed, I did not realize what a
serious disease Alzheimer's is or how many people were affected
by it. Over the past few years, here is some of what I have
learned.
Over five million Americans are living with Alzheimer's
today. As many as 16 million will have Alzheimer's disease by
2050. This year, our country will spend $203 billion in direct
costs for those with Alzheimer's, including $142 billion in
government costs to Medicare and Medicaid. Those costs are
expected to exceed $1.2 trillion by 2050. In fact, a recent
study in the New England Journal of Medicine confirmed that
Alzheimer's is the most expensive disease in America.
Because the costs are set to skyrocket and so much of this
is paid by government, overcoming Alzheimer's is the key to
fixing the country's growing fiscal challenges. For example, if
a new medicine was developed to delay the onset of the disease
by just five years, we could cut government Alzheimer's costs
nearly in half by 2050, if only we fund the research needed to
get there.
What all of these numbers cannot tell you is the cost of
the disease to the families. Since we announced that my dad has
Alzheimer's, perfect strangers have been coming up to me and
crying to tell me about Alzheimer's in their family. In fact,
there are a thousand advocates on Capitol Hill today, hundreds
in this hearing room now, who have been touched by Alzheimer's,
and I have been honored to hear many of their stories, and
today, I am honored to share my family's story with you.
In June of 2011, my dad announced that he had been
diagnosed with Alzheimer's disease. I was 24 years old at the
time. I met a young man last night who was in sixth grade when
he heard his father was diagnosed, and a little girl who could
not have been more than 12 years old whose father just passed
away from Alzheimer's. Dad thought it was important for people
to know that you can keep doing what you love and that life
does not end right away when you get Alzheimer's. It was also
so important for my dad to take action and help spread the word
about the need to find a cure for Alzheimer's.
Shortly after my dad's announcement, my brothers and I
joined my dad for the Glen Campbell Goodbye Tour. My mom was by
my dad's side, of course, and we were also joined by the
filmmakers who are doing a documentary about my dad. For dad,
music has been therapeutic, and being public about his
diagnosis was really helpful, because he did not want people to
get the wrong idea at concerts if something appeared to go
wrong.
While there were a few challenges on stage during some of
the shows, we always smoothed things out quickly. It helped to
have my brothers and me on stage with him, and it helped to
have such amazing support from my dad's fans. And it helped
that my dad has been playing and touring for so long that the
stage for him feels like home. That is where he is most
comfortable, I think.
One highlight of the Glen Campbell Goodbye Tour was playing
at the Grammys last year and getting to meet Paul McCartney
there. And another highlight was our visit to Capitol Hill last
year. My family and I came to Washington, D.C., last May when
the first National Alzheimer's Plan had just been released. We
spent a few days meeting with members of Congress to ask for
funding for the plan. We also played a special performance for
members of Congress during a briefing put on by the Alzheimer's
Association. I was so grateful to see Senators and
Representatives singing along with dad and to know that they
were fighting to end this terrible disease.
Dad has been really committed to this fight, and we all
have, and we are committed to doing more about it, which is why
we are here today.
Senators, there is something that my family and this whole
community needs you to do. Congress passed a bill two years ago
which resulted in the first ever National Alzheimer's Plan. The
plan is strong and so is its goal to prevent and effectively
treat Alzheimer's by 2025. As our nation's leaders, I
respectfully ask that you support the implementation of the
National Alzheimer's Plan and that you fund the President's
budget request of an additional $100 million for Alzheimer's
this year.
In my family, music was always a part of our home and we
are still playing. We knew at the beginning that Alzheimer's
does not rob you of the things you love right away, but the
disease will keep getting worse and there are not any
medications today that can stop it.
Alzheimer's is a disease that robs people of their lives
while they are still living it, and it robs families of the
people they love while they are still standing right in front
of their eyes. I think a person's life is comprised of
memories, and that is exactly what this disease takes away from
you, like a memory of my dad taking me fishing in Flagstaff
when I was a little girl, or playing banjo with my dad while he
plays guitar. Now, when I play banjo with my dad, it is getting
harder for him to follow along and it is getting harder for him
to recall my name. It is hard to come to the realization that,
someday, my dad might look at me and I will be absolutely
nothing to him.
We need to find a cure for this because we are not the only
family affected. So much pain should not exist in the world.
Let us work together to end Alzheimer's. Thank you.
[The prepared statement of Ms. Campbell follows:]
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
The Chairman. Thank you very much.
[Applause.]
Do any of the members, before we excuse the Campbell
family, have any questions? Any additional comments?
Senator Collins. I just want to thank Ashley for her very
moving and compelling testimony. It is so important that we put
a human face on this, and I admire the decision of your entire
family to step forward out of the shadows and shine a spotlight
on this devastating disease, so thank you so much for being
here today.
Ms. Campbell. Thank you.
Senator Whitehouse. I just want to join my colleagues in
thanking the Campbell family, thanking Ashley for her wonderful
testimony, and thanking Mr. Campbell for the many years of
pleasure that I got listening to him as I was growing up.
The Chairman. Courage is an American characteristic that is
embraced by the American people. You clearly have shown that
courage, as have your mom and dad, and we want to thank you for
sharing your story. This wretched disease has touched almost
every one of us in this room one way or another, and you have
stood tall to bring the focus all the more on this issue of
monumental consequence. So we are deeply grateful.
And I know you have to get to the airport, so at your
pleasure, you all just excuse yourselves whenever you would
like.
Ms. Campbell. Thank you.
The Chairman. Next, we are going to hear from Dr. Don
Moulds. He is the Acting Assistant Secretary of Planning and
Evaluation at the Department of Health and Human Services, and
in this capacity, Dr. Moulds is overseeing the development of
the national strategy to end Alzheimer's disease. He is also a
member of the Federal Advisory Council on Alzheimer's Research,
Care, and Services.
We also have Dr. Ronald Petersen. Dr. Petersen is the
Director of the world-renowned Mayo Clinic's Alzheimer's
Disease Research Center and the Mayo Clinic Study of Aging. He
has authored over 400 peer-reviewed articles on memory
disorders, aging, and Alzheimer's disease. Dr. Petersen's most
recent research focuses on the study of normal aging, mild
cognitive impairment, dementia, and Alzheimer's.
And then we will hear from Dr. Michael Hurd. Dr. Hurd is
the senior principal researcher at the RAND Corporation, where
he directs the RAND Center for the Study of Aging. His research
focuses on the economies of retirement as well as other topics
related to aging and the elderly. Dr. Hurd recently wrote a New
England Journal of Medicine Study on the economic cost of
Alzheimer's entitled, ``Monetary Cost of Dementia in the United
States.''
Gentlemen, welcome. We will take you in the order in which
I introduced you and then we will get into the questions after
all three of you have testified. Your formal statement is
entered into the record, and so we would ask you to summarize
your comments.
Dr. Moulds.
STATEMENT OF DONALD B. MOULDS, PH.D., ACTING ASSISTANT
SECRETARY FOR PLANNING AND EVALUATION, U.S. DEPARTMENT OF
HEALTH AND HUMAN SERVICES
Mr. Moulds. Mr. Chairman and members of the committee, my
name is Don Moulds and I am the Acting Assistant Secretary for
Planning and Evaluation in the Office of the Secretary of the
Department of Health and Human Services. I am honored to come
before you today to talk about the implementation of the
National Alzheimer's Project Act, or NAPA, and the National
Plan to Address Alzheimer's Disease.
We have an historic opportunity to influence the way we
address Alzheimer's disease, its impact on those who have it
and their families, and perhaps reduce the incidence and the
devastation it causes in the future. President Obama and
Secretary Sebelius have made it abundantly clear that we cannot
wait to act on this urgent national priority.
In my testimony, I refer to Alzheimer's disease under this
term. I include related dementias, consistent with the approach
Congress used in the crafting of the law.
As many as five million people in the United States have
Alzheimer's disease. The effects of Alzheimer's can be
devastating for both individuals with the disease and their
families. As Dr. Hurd will testify, the annual cost of care for
people with AD is estimated to be between $160 and $215 billion
annually. There is no treatment for AD and eventually it is
fatal. It is the fifth leading cause of death among people aged
65 and older. As we have made progress fighting other diseases
and the population has aged, mortality from Alzheimer's has
risen.
The National Alzheimer's Project Act establishes an
Advisory Council on Alzheimer's Research, Care, and Services,
which brings together some of the nation's foremost experts on
Alzheimer's disease. Ron Petersen, the Chair of the Advisory
Council, will speak about their work in just a few moments.
Our work on the National Plan began in 2011 with the
establishment of an Interagency Group on Alzheimer's Disease
and Related Dementias. The group included the Departments of
Veterans Affairs and Defense, the National Science Foundation,
and over a dozen HHS agencies. The Interagency Group
inventoried Federal programs, including research, clinical
care, and services and supports. It then identified areas of
overlap, opportunities for collaboration, and gaps, forming the
basis of the initial work for the National Plan.
In early 2012, we shared a framework and drafted the
National Plan to Address Alzheimer's Disease with the Advisory
Council and with the public. We incorporated the input received
from the Advisory Council and thousands of stakeholders. We
built off the President's historic ``We Can't Wait''
investments in Alzheimer's and identified concrete steps to
address the disease. The National Plan was released on May 15,
2012. As Secretary Sebelius said, it provides the cornerstone
of an historic effort to fight Alzheimer's.
The National Plan addresses five ambitious goals. First, to
prevent and effectively treat Alzheimer's disease by 2025.
Second, to optimize care quality and efficiency. Third, to
expand supports for people with Alzheimer's disease and their
families. Fourth, to enhance public awareness and engagement.
And finally, to track progress and drive improvement.
In the 11 short months since the National Plan was
released, we have already made significant progress. In May of
2012, the National Institutes of Health convened an Alzheimer's
Disease Research Summit, which brought together national and
international researchers to develop recommendations on how to
best advance Alzheimer's research. The summit recommendations,
which are designed to capitalize on current scientific
opportunities, will inform Alzheimer's research for years to
come.
The administration's Alzheimer's commitment of $50 million
in 2012 supported some exciting research projects, including a
clinical trial of an insulin nasal spray that could prevent
memory impairment and improve cognition during the initial
period of the disease. This funding supported the first
clinical trial of a treatment to prevent the disease by
targeting amyloid, a brain hallmark of AD, among a unique
family in Colombia whose otherwise healthy members share a
genetic mutation that causes early onset of Alzheimer's
disease.
We have also taken steps to improve the care received by
people with AD. The Network of Geriatric Education Centers
funded by HRSA have provided training to over 10,000 doctors,
nurses, and direct care workers to better recognize the
symptoms of AD and provide screening and help consumers and
families who are living with the disease.
The Administration on Community Living has partnered with
the National Family Caregiver Alliance to create a resource
with assessment measures that providers can also use to help
identify caregiver needs and create a care plan to address
them.
HHS launched Alzheimers.gov, a one-stop resource for
families and caregivers. There were over 200,000 visits to
Alzheimers.gov in the first ten months.
Despite all of the progress, we still have a long way to go
in our fight against Alzheimer's disease. We are finalizing the
2013 update of the National Plan, which will add additional
steps we take to beat this disease. The President's fiscal year
2014 budget includes a $100 million initiative to fight the
disorder through expanded research, improve supports for
caregivers, and enhance provider education and public
awareness.
In addition, the President's Brain Initiative will
complement our research by giving us insight into healthy brain
functioning and the impact of Alzheimer's disease. It may also
help pinpoint interventions to treat the disease.
With many partners, the administration has taken
significant steps to fight Alzheimer's over the past two years,
but much work remains. I look forward to working with you to
improve the care received by millions of people with the
disease, better support their families and caregivers, and
prevent and effectively treat AD by 2025.
[The prepared statement of Mr. Moulds follows:]
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
The Chairman. Dr. Petersen.
STATEMENT OF RONALD C. PETERSEN, M.D., PH.D., DIRECTOR, MAYO
ALZHEIMER'S DISEASE RESEARCH CENTER, MAYO CLINIC, ROCHESTER,
MN, AND CHAIR, ADVISORY COUNCIL ON RESEARCH, CARE, AND
SERVICES, NATIONAL ALZHEIMER'S PROJECT ACT
Dr. Petersen. Good afternoon, Chairman Nelson, Senator
Collins, and distinguished members of the Senate Special
Committee on Aging. My name is Ron Petersen. I serve as the
Chair of the Advisory Council on Research, Care, and Services
for the National Alzheimer's Project Act. I am also a professor
of neurology and Director of the Mayo Alzheimer's Disease
Research Center at the Mayo Clinic at Rochester, Minnesota.
The first United States Plan to Address Alzheimer's Disease
was released in May of 2012 and represents a major step forward
toward accomplishing the primary goal of the plan, to prevent
and effectively treat Alzheimer's disease by 2025. My
colleague, Dr. Don Moulds, has nicely outlined the structure of
the plan and the accomplishments of the Federal Government.
The National Alzheimer's Project Act charged the Secretary
of Health and Human Services with developing the National Plan,
but in addition, the law charged the Advisory Council with
generating recommendations to the Secretary and directly to
Congress. I would like to take a couple moments to highlight
some of the more salient recommendations.
The research community is poised to make key contributions.
However, insufficient resources are impeding progress towards
overcoming the disease. Therefore, the Advisory Council states
that there is an urgent need for annual Federal research
funding to be increased to the level needed to fund a strategic
research plan and to achieve the breakthroughs required to meet
the 2025 goal. Initial estimates of that level are $2 billion
per year or more.
Other research endeavors funded by the National Institutes
of Health are of similar or greater magnitude. Currently, the
NIH spends approximately $6 billion on cancer research, $3
billion on HIV/AIDS research, and a little over $2 billion on
cardiovascular disease. Yet, at present, the Federal research
budget for Alzheimer's disease is less than one-half-billion
dollars. Yet Alzheimer's disease may be the defining disease of
our generation. In order to keep it from being the defining
disease of the next generation, it is incumbent upon us to make
the appropriate investments now to enable the research
community to carry out effective studies to halt the disease.
Several other recommendations are worth noting. One
involves the therapeutic pipeline. Another recommendation from
the Advisory Council pertains to the compression of the
therapeutic pipeline, or shortening of the extended period of
time--often over ten years--it takes from the discovery of a
molecule to the production of a drug for treatment.
This being a National Plan, along the same theme, the
Advisory Council realizes that this is a National Plan and not
a Federal plan. As such, we need to invoke assistance of many
private partners to come together to develop a therapeutic
approach for the disease.
This is a global disease. We realize that Alzheimer's
disease is not unique to the United States. It is a global
disease and we have a great deal both to learn from and to
share with other countries that have developed national plans
prior to ours.
With the aging of America, we realize that the front line
of evaluations for individuals at the early stage of
Alzheimer's disease will likely be primary care practitioners.
As such, the Advisory Council has recommended the development
of a unified curriculum for primary care practitioners to
become more knowledgeable about Alzheimer's disease and other
dementias to enhance the skills necessary to deliver dementia-
capable care. In addition, curricula designed for caring for
individuals with Alzheimer's disease needs to be developed at
all levels of care, including physicians' assistants, nurses,
allied health care workers in skilled nursing facilities, and
emergency department personnel to ensure uniform practices are
undertaken for those affected with the disease.
I would like to close by thanking Congress and the
President for the initial steps at increasing funding for
Alzheimer's disease research. As Dr. Moulds indicated, the
initial redirection of funds in fiscal year 2012 yielded two
large clinical trials, one for prevention and one for
treatment.
While we all recognize that these are very difficult times
for the Federal budget, this is an issue that cannot wait. With
the aging of the baby boomers, individuals turning age 65 at a
rate of 10,000 persons per day, it is easy to see why this will
be the defining disease of our generation. It will swamp other
diseases and be the single most salient condition of aging. It
is likely that everyone in this room has or will be impacted by
this disease in one form or another, and it is our obligation
to do everything we can to be certain that our children will
not have to face the same situation. It will take a few
courageous people, likely this committee, to make bold
statements necessary to make it possible for us to achieve the
goal of the National Plan to Address Alzheimer's Disease, to
prevent and effectively treat Alzheimer's disease by 2025.
Thank you for the opportunity to represent the Council.
[The prepared statement of Dr. Petersen follows:]
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
The Chairman. Dr. Hurd.
STATEMENT OF MICHAEL D. HURD, PH.D., DIRECTOR, RAND CENTER FOR
THE STUDY OF AGING
Mr. Hurd. Chairman Nelson, Ranking Member Collins, members
of the committee, thank you for the opportunity to testify
before you today on a critically important topic, the monetary
costs of dementia in the United States.
My testimony will be based upon work performed at the RAND
Corporation and the University of Michigan by me, Paco
Martorell, Adeline Delavande, Kathleen Mullen, and Kenneth
Langa. It was published in the New England Journal of Medicine
on April 4 of this year.
While our work is about the monetary costs of dementia, my
coauthors and I recognized that the emotional costs of dementia
are vast, indeed, as we have heard today. But in our data, we
have no good way of measuring those emotional costs. However,
even with the more modest goal of measuring the monetary costs,
there are a number of challenges.
First, most people with dementia have a coexisting health
problem, such as a history of stroke or a heart condition.
These health problems would, by themselves, lead to higher
costs. We wanted to separate out those costs so as to find the
costs attributable to dementia, not the costs of health care of
people with dementia.
A second difficult aspect concerns informal care, that is,
unpaid care performed by a spouse, daughter, or other family
member, or others. We already knew that the amount of informal
care was substantial, so that the method of placing a monetary
value on that care could cause our estimates to vary by a great
deal.
We used the Health and Retirement Study. The HRS was first
fielded in 1992, and since then, it has become the preeminent
data source for general population representative studies of
aging. Funded by the National Institute on Aging and the Social
Security Administration, it provides a wide variety of data,
including cognition, health care use, and costs and informal
caregiving.
We estimated that the prevalence of dementia in the
population 71 or older was 14.7 percent in 2010. We found that
persons with dementia had about $29,000 more in annual spending
for health care than persons without dementia, after adjusting
for coexisting conditions and demographic characteristics. The
great majority of those costs were for nursing home stays and
in-home care that was paid for. Adding in the costs of informal
care increased the total annual costs due to dementia
substantially. Depending upon the method of valuing informal
care, the costs per person with dementia were between $42,000
per year and $56,000 per year.
We then used Census estimates of the age distribution of
the population to estimate the total cost of dementia, that is,
the total cost in the population. We found that attributable
actual spending was $109 billion in 2010. This cost places
dementia as the most costly disease in the United States in
terms of actual spending. Adding in costs for informal care
increased this estimate to the range of $160 billion to $250
billion per year.
Because the prevalence of dementia sharply increases with
age, the aging of the population itself, particularly when the
baby boom generation reaches advanced old age, will increase
future costs. We calculated that by 2040, the costs for care
purchased in the marketplace will more than double, from $109
billion to $260 billion in real terms. Adding in the costs of
informal care increases the cost in 2040 to between $380
billion and $510 billion, depending upon the method of valuing
informal care.
Our research shows that dementia is costly and that the
costs will increase sharply, but we did not estimate the
distribution of costs across households. Even within a year,
these costs are unequally distributed, with some households
spending nothing and others as much as $100,000 per year.
We suspect that the costs are even more skewed when
accumulated over many years because some people with dementia
can be in nursing homes for five years or even more, or as Dr.
Petersen suggested, even ten years. The accumulated costs can
be financially devastating to some families. In principle, this
risk could be reduced by long-term care insurance, but the
products on the market are apparently not well designed. Only
about 13 percent of persons age 55 or older hold this type of
insurance.
In summary, dementia is very costly and will grow more
costly unless we find ways of delaying onset. In the meantime,
well-designed long-term care insurance could reduce the risk of
catastrophic out-of-pocket spending.
Thank you for your attention.
[The prepared statement of Mr. Hurd follows:]
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
The Chairman. Thank you, gentlemen.
Before I turn to Senator Collins, Dr. Petersen, would you
explain what happens to the brain from a medical standpoint--
the build-up of plaque, why do the neurons not fire, et cetera.
Dr. Petersen. In general, we call Alzheimer's disease a
degenerative disease of the brain, and that means that the
nerve cells are not working as well as they formerly did. We
think that a leading hypothesis right now is this protein that
you mentioned, Senator. Amyloid gets deposited in the brain and
causes destruction to the nearby nerve cells. Then there is a
cascade of events that occur. Inflammation, other proteins
become involved.
And when that process begins in the memory part of the
brain, so called the temporal lobe or the hippocampus, the
person becomes forgetful. Then as the disease progresses that
process spreads to other regions of the brain, those involved
with language, ability to pay attention, concentrate, problem
solve. And as that starts to spread, then other behaviors start
to deteriorate. The person loses an ability to care for him or
herself and the function deteriorates.
So it is a slow process that begins many, many years, maybe
decades before the symptoms actually present themselves, and
this degenerative process gradually progresses over time.
The Chairman. Is there a trigger that we know of that
causes the build-up of the protein?
Dr. Petersen. It is a good question. In some instances,
yes. In one form of the disease, so-called familial or truly
inherited Alzheimer's disease, there is a genetic mutation. Dr.
Moulds mentioned the study that is now being funded by the NIH
to look at a family who has this particular genetic tendency.
In those instances, the genetic tendency leads to the build-up
of this amyloid protein. But that is perhaps only one percent
of the disease.
In the much larger proportion, sort of late onset, more
typical Alzheimer's disease, there still may be a familial
tendency, meaning that it sort of runs in families. So there
are what are called genetic susceptibility polymorphisms, a big
term that means you just a risk, an increased risk because of a
contribution of a variety of genes that will lead you to
misprocess these proteins and develop the disease.
There still might be some environmental triggers that
accentuate that, head trauma being one of them. So there are
some environmental factors that bring it on, as well. But we do
not fully understand why one person with the same genetic make-
up may develop the disease, the next person not. So research
underway.
The Chairman. Do we know the molecular structure of the
protein?
Dr. Petersen. Absolutely. We know a great deal about the
amyloid protein, the tile protein. Amyloid makes up the plaques
in the brain. The tile protein makes up the tangles in the
brain. The defining characteristics of the disease in the
brain, plaques and tangles. So when someone passes away, has an
autopsy, you look at the brain under the microscope. To call it
Alzheimer's disease, they have to have these plaques and
tangles.
We know a great deal about the make-up of these proteins,
the genetic sequencing of them, when things get misprocessed,
how they get misprocessed, the enzymes that cause the
misprocessing, et cetera. So we know a great deal about it, and
that has resulted in many therapeutic attempts aimed at various
aspects of that process. So we do know a lot about the basic
biology of the disease.
The Chairman. But we have not found the molecules or the
genes or the proteins that could reverse the process of the
build-up of this plaque.
Dr. Petersen. Essentially, that is correct, meaning that we
do not have a disease modifying therapy, meaning we do not--we
are unable to get at the underlying plaque and tangle process
and stop it. But that is a rich area of research right now.
Many trials are underway, many approaches to doing that, either
blocking the building up of the protein or enhancing the
removal of the protein. All of these are possibilities, but we
are not there yet.
The Chairman. Thank you for that explanation.
Senator Collins.
Senator Collins. Thank you, Mr. Chairman.
Dr. Petersen, noted neurologist and author Dr. Oliver Sacks
has written about music's role and impact on patients with
neurological disorders like Alzheimer's. I could not help but
be struck by Ashley's poignant comment when she said her father
is having a hard time remembering her name, and yet just a few
moments before the hearing, I heard him playing the guitar,
remembering very complicated musical sequences, singing with
his daughter, and able to change chords and play significant
portions of several of his songs.
Is there a neurological reason why music can have such a
powerful effect on a patient with dementia and why the ability
to remember and respond to music is retained even when the
ability to remember the name of your daughter is not?
Dr. Petersen. It is a striking contrast in Mr. Campbell,
his dense memory problem, as we have all seen, even manifesting
in his inability to remember Ashley's name, and yet his ability
to perform on stage. And, in part, there are neurologic
explanations because of the parts of the brain that are
involved in those different activities.
So, as I was mentioning to Senator Nelson that the brain--
the disease starts in the memory part of the brain, and that is
the part of the brain that sort of allows us to learn new
information and recall recent information. Very old
information--where we grew up, where we went to school--those
kinds of events are often retained well into the disease.
In addition, the ability to play the guitar, which
neurologists sometimes call procedural memory, motor skill
memory, can be relatively preserved far into the disease
process. So it is not an equal opportunity. The brain is not an
equal opportunity organ to be affected by the disease. Certain
regions are more susceptible to others.
So it is quite astounding that Mr. Campbell can be on the
stage, can play music apparently fairly normally, really,
things he has done many, many times going back literally
decades. And if you prompt him with the lyrics of some of the
songs with a teleprompter, it is business as usual. Mr.
Campbell looks like the Mr. Campbell of years ago. Yet between
songs, he may, as Ashley was indicating, he may wander around
and then it becomes a little bit of freeform as to what is
going to happen next and we cannot necessarily predict, and he
will have trouble with where he is going and what is happening
next.
So it really involves the regions of the brain and the way
the disease evolves over time.
Senator Collins. Thank you.
In addition to your role as a physician and as the Chair of
the Advisory Council, you are one of the world's leading
researchers on Alzheimer's through the Mayo Clinic. Could you
tell us a little bit more about promising research that you are
undertaking? I am hoping for everyone here, for all of us, that
there are some promising developments or good news on the
horizon. It has been a long time since there has been a
breakthrough. I think it goes back to 2003, as I recall.
Dr. Petersen. Thank you, Senator. You have given me too
much credit. I tend to work around a lot of bright people and
they are the ones who are responsible for much of the progress
in the disease.
I think there are some bright areas with respect to the
disease itself and what we understand about it and getting
ready to intervene. Some of the work that we are doing at the
Mayo Clinic involves what we call the Mayo Clinic Study of
Aging. Very briefly, this is a random sample of people who live
in our region who are aging fairly normally. We have been able
to evaluate these people ages 50 to 90, randomly sample them,
bring them in, and study them thoroughly clinically. But we are
also able to look at them with respect to what are called
biomarkers, and by biomarkers, I mean images of the brain, MRI
scans, PET scans. We can even image this protein in the brain
called amyloid now when people are normal.
So we are poised to be able to characterize people, perhaps
it is an overstatement to say a prediction formula, but that
type of approach, risk profile of people based on their age,
maybe their education, family history, some genetic features,
maybe some of these biomarkers, that we will be able to say,
you have a thus and so probability of developing the symptoms
of Alzheimer's disease by a certain age.
That helps us, then, to have these individuals ready and
poised to be able to take a therapy when that therapy--and I
think it is ``when,'' not ``if''--that therapy is, in fact,
developed, so that we will be able to use that information
regarding an individual's risk to dictate what kinds of
therapies we use.
For example, what if an immunotherapy, an antibody or a
vaccine, is developed? That is very promising, under
investigation right now. It is likely to be expensive and maybe
a little risky. So it may not be completely benign to give
this. So we are going to need to know who is at the top third
of the risk, who is in the middle, and who is in the bottom
because we may want to expend those resources on individuals at
the top end of it before they express the symptoms of the
disease.
So I think that that type of work is out there. There is a
great deal of work going on regarding the clinical
characteristics and understanding of the disease. The therapy
side is getting there but has not reached that pinnacle right
now. But as soon as that happens, these two will merge and,
hopefully, we will be able to have an impact on that disease.
Senator Collins. Thank you.
The Chairman. It is just amazing to me that with all of our
ability to understand, that we cannot make the breakthrough
here. We have not been able, for example, in others, such as
ALS, Amyotrophic lateral sclerosis, Lou Gehrig's disease. And
yet I think we are right on the cusp of the big breakthrough.
Dr. Petersen. I could not agree more, Senator, that I think
we are just poised. The research community is anxious to be
able to make those contributions. We cannot say yet today,
tomorrow, where it is going to be. But I think so, and it is
going to be a huge breakthrough when it happens.
The Chairman. Senator Whitehouse.
Senator Whitehouse. First, let me thank Chairman Nelson for
holding this hearing. This is such an important topic and I
think you have done a really wonderful job of bringing very
effective witnesses here. I also wanted--and the Ranking
Member, as well. Thank you, Senator Collins.
I also wanted to thank the advocates who have been here
today and compliment them on what I think is a really
impressive piece of demonstrative literature that they brought
with them. Donna McGowan and her husband, Bill, from Rhode
Island came to visit me and they showed the graphic that you
all have been handing out all day today, and it is really
extraordinary when you look at the cost piled up in this huge
line that Medicare and Medicaid will spend on this, not private
insurance but just the Federal Government through Medicare and
Medicaid, and then you compare what we are spending on research
to try to avoid those costs. And if you do, you have got to
look down to this little thing which you cannot even see out
there. It is about as wide as my fingernail. This little speck
is the amount that we are spending on NIH research to combat an
illness that is creating that much cost.
As Ashley demonstrated so clearly, the cost of Alzheimer's
is measured in a great deal more than dollars. But I think the
case that has been made with this kind of material is really
terrific and I look forward to working with my colleagues to
make sure that that funding is protected and increased and we
have a chance to get ahead of this illness.
One of the situations that emerges when a family is faced
with this illness is the question of decisions that are going
to be made as the illness progresses and how people wish to be
treated. And it is incredibly important to make those decisions
early on while the individual suffering from the disease still
has the ability to make those decisions and determine what they
want. And there are a great number of us on this committee--I
know Senator Collins and Senator Nelson have been very active
in this area--who want to improve the way in which Americans
express their wishes about how they wish to be treated when
their illnesses are advanced and make sure that living wills
and advance directives and things like that are honored.
I would love to ask the panel what your experience has been
at how effectively we are treating that goal with patients who
have this illness and what kind of progress should we be making
to make sure that those choices are being driven by the wishes
of the patient and the family and not just the grind of the
health care system.
Mr. Moulds. So, why don't I start and then Dr. Petersen,
because he has obviously encountered this with patients in the
course of his career, both as a researcher but also as someone
providing care, medical care.
But there are a number of steps that are taken in the plan
to provide information and encourage health care providers to
have just the conversations that you are alluding to right now
earlier on in the process. So care, planning, and coordination
is incredibly important to this population. If ever there is a
population where the case can be made that you need those
elements in the provision of care, it is with patients with
dementia.
We are pushing out through HRSA's Geriatric Education
Centers--there are 45 of them over the country--as part of NAPA
information to try to educate health care providers about best
practices in dementia care, and part of that is having these
care planning and coordination conversations in the doctor's
office earlier in the process.
As for the question, the second part of the question, which
is the question about advanced dementia care planning, that
was, in fact, one of the recommendations that was made by the
Advisory Council to the Secretary for inclusion in the 2014
Plan, so the second iteration of the Plan. All of those
proposals or recommendations are before the Secretary at the
moment. She is taking all of them very seriously, and we are
happy to report back out, we expect that the second iteration
of the Plan will be made public in May sometime, probably mid-
May. There will be some discussion at the Advisory Council
meeting on Monday, but we are happy to report further when she
has made her decisions about the second iteration of the Plan.
Senator Whitehouse. Thanks.
Dr. Petersen, anything to add in my remaining 38 seconds?
Dr. Petersen. Just a quick comment that it is increasingly
important to do this. And I think our recommendations in the
Plan have suggested that in geriatric education, because it is
particularly important in this disease to do it earlier rather
than later, because by the process of the disease itself,
people lose the insight as to what is going on, because when
the parts of the brain become involved with the disease that
allow us to introspect and look at ourself, the people are no
longer able to make those kinds of decisions. So emphasizing
the importance of doing it early.
Senator Whitehouse. Thank you.
The Chairman. Senator Donnelly.
Senator Donnelly. Thank you, Mr. Chairman, and I want to
thank all of our witnesses for all your hard work on this
issue.
I also want to mention my former colleague in the House,
Dennis Moore, who is dealing with this now, who is an
extraordinary leader, extraordinary person, and so many
Hoosiers who are here today for Alzheimer's.
Dr. Moulds, I wanted to ask, FDA recently approved a new
diagnostic technology and it helps diagnose Alzheimer's. CMS is
in the process of deciding whether it should be considered for
national coverage under Medicare and Medicaid. And I was
wondering if you are working with CMS to ensure that all
appropriate Medicare patients have access to technologies that
can help with early diagnosis of Alzheimer's.
Mr. Moulds. Sure. The short answer is that CMS has been
quite engaged in this process. We have--I mentioned earlier in
my opening remarks about the Interagency Working Groups that we
established very early on. They are in three general areas, on
the research side, clinical care, and then long-term care
services and supports. CMS is chairing the clinical care
subcommittee. There has been a good amount of conversation
about diagnostics at CMS.
And more to the question about how to expedite the review
of potentially helpful both diagnostics and, hopefully, going
forward, therapeutics, there is a process that exists where
that work can go on concurrently. CMS is reviewing, I believe,
a number of diagnostic tools at the moment. I cannot speak to
decisions----
Senator Donnelly. Sure.
Mr. Moulds [continuing]. But they go through the normal
channels where they are reviewed by an external committee for
efficacy and for the other considerations that go into making
those decisions.
Senator Donnelly. Thank you.
Dr. Petersen, I recently heard about an area called
epigenetics and was wondering what you have seen in this area
of almost--seeing its potential for treating Alzheimer's, what
you think of it, what you know of it, and is this a path that
seems to show promise.
Dr. Petersen. I think it might very well be promising
insofar as that epigenetics refers to a trait of a particular
disease that before the full expression of the disease appears.
So, for example, if somebody has a genetic tendency to develop
Alzheimer's disease by virtue of their genetic make-up, there
may be signs that the disease is manifesting itself early.
So, for example, take imaging. Imaging--certain regions of
the brain, as I was mentioning earlier, are preferentially
affected by the disease. So there may be some signatures in the
brain with shrinkage in certain parts of the brain that can be
related to the genetic make-up of that individual and imply
that this person is on the road to developing the disease.
Senator Donnelly. And I certainly do not have your level of
knowledge, obviously, but is that an area that could, in
effect, turn it off at that point, turn off the Alzheimer's?
Dr. Petersen. It gives us an opportunity to pick up the
disease process at an earlier point in time. So if we have
effective therapeutics, we could intervene at that earlier
point in time when that genetic signal, that epigenetic signal
is there, and it gets to the issue of certain markers that
characterize the disease and are they going to be therapeutic
targets for the disease. We are not there yet, but that is
where we are going.
Senator Donnelly. And as we look at Alzheimer's and talk
about 2025, do you have milestones that, as we look forward,
here is where we hope to be by this time, here is where we hope
to be by this time, so that we know either we are making
progress or we are starting to fall behind from where we hope
to be?
Dr. Petersen. A very timely question. With the Advisory
Council meeting that is coming up on Monday that Dr. Moulds
just referred to, we are going to be discussing just that
issue, and our colleagues at the National Institute on Aging,
Dr. Richard Hodes and his team, have developed a rather
extensive chart of milestones mapping the plan, the plan that
was translated into the research summit that was held at NIH
last May, the recommendations coming out of that summit insofar
as what are actual items that are actionable and when. So the
grid has been divided into short-term goals, intermediate
goals, long-term goals.
Senator Donnelly. And I do not mean to interrupt you. I
have ten seconds left. I just want to ask you, is the most
important thing we can do to continue with the research
funding?
Dr. Petersen. I am a little biased, but absolutely.
Senator Donnelly. Okay. Thank you.
Thank you, Mr. Chairman.
The Chairman. Senator Blumenthal.
Senator Blumenthal. Thank you, and I want to join in
thanking our Chairman and Ranking Member for having this
hearing and also the advocates from all around the country who
have been so steadfast and vigorous in championing this cause
and also advocating for the kind of research that is necessary
and caregiving to address this problem.
I want to begin with your testimony, Dr. Moulds, saying
that the President's fiscal year 2014 budget includes a $100
million initiative to fight this disorder through expanded
research, improved supports for caregivers, and enhanced
provider education and public awareness.
We have seen the charts. You know the numbers better than
I. Is $100 million really enough? I mean, does it even come
close to being enough?
Mr. Moulds. That is obviously a very difficult question to
answer. What I can tell you is that the things that we are able
to do with the investments that the President has identified,
that we were able to do in 2012 and moving forward with both
the insulin nasal spray trial and the trial in Colombia for
early onset, were tremendously important activities.
I think if you were to ask anybody in the research
community whether there are things beyond what you could fund
with $100 million that would be worthwhile research, the answer
would almost certainly be yes. But if you think about the NIH
budget and the way that it has been affected by sequester, the
fact that we are moving forward with the research agenda this
year, that the President has identified funds in 2014 reflects
a tremendous commitment to fighting this disease.
Senator Blumenthal. But I take it that if you had double or
triple or a lot more money, there would be worthwhile research
to be done.
Mr. Moulds. So, to be clear, I am not an Alzheimer's
researcher, so I would defer to people who are.
Senator Blumenthal. I am happy for you to defer, but I
think you know enough----
Mr. Moulds. Yes.
Senator Blumenthal [continuing]. I think almost everyone in
this room knows enough to say, yes.
Mr. Moulds. So, I would reiterate the answer that I gave
earlier, which is that when you talk to researchers in the
community and ask the question that you just put, the answer
is, yes, there is more that can be done. There is a lot that
can be done. We are making tremendous efforts to move this
agenda forward. We did it last year. We are doing it this year.
We will be doing it in 2014.
Senator Blumenthal. Dr. Petersen, did you have anything you
wanted to add?
Dr. Petersen. In my remarks, I indicated that the Advisory
Council has recommended a research budget of about $2 billion a
year. A reasonable question, where did that number come from?
Well, in fact, the Alzheimer's Association undertook an
exercise during the development of the first plan and the
recommendations surrounding the first plan asking experts in
the research community, in your area of research, what are
short-term goals, what are medium goals, and can you put a
price tag on that?
As difficult as that is, in fact, many researchers came
together throughout the entire spectrum of the disease, basic
biology to treating patients, put numbers on their goal, what
time frame and all, and, in fact, generated this $2 billion. So
I think, again, the community really can be receptive of that
figure as being relatively solid.
Senator Blumenthal. Thank you.
Well, I understand, Dr. Moulds, the limitations of what you
can say and what your role is here. My question to Dr. Petersen
was going to be about how that $2 billion number is derived.
You know, it could be $20 billion. It could be $100 billion.
But $2 billion seems to be the consensus number that the
research community would pinpoint.
Mr. Moulds. I mean, I think so. And, again, it is $2
billion or more, because, in fact, to do a clinical trial in
Alzheimer's disease may be $100 million-plus to run it out.
This is a chronic disease. It takes many people to test a
particular therapeutic. So that is just one aspect. But there
are a lot of other basic science questions that need to be
answered, as well as clinical questions regarding the
characterization of the disease. So I think that is a realistic
number.
Senator Blumenthal. Thank you.
One last question, if I may ask you, Dr. Hurd. We have not,
in my view, developed the kind of private insurance tools that
families need to deal with this problem. Could you give us some
thoughts about whether you believe that there are private
insurance policies and products available now to help families
address the huge, humongous, often heartbreaking costs
financially that they need to face in dealing with a family
member afflicted with this disease.
Mr. Hurd. Well, I think, indeed, it is a big lack in the
insurance market and it exposes some families to tremendous
financial risk, catastrophic risk, because of the chances--
there are not large chances, but there are chances that they
might have to support a family member in a nursing home for ten
years, and we know the costs of one year in a nursing home are
approaching $100,000 per year. So you can see what the numbers
are.
The main risky group would be where one spouse remains in
the community and the other spouse is in the nursing home,
because then the spending will come out of the family's
resources and impoverish the person in the community.
Why are there not? So, we know that the products that are
there are not satisfying to families because the take-up rate,
as I mentioned, is 13 percent. Why are the policies
unsatisfactory? It is difficult for the insurance companies to
write kind of correct kind of policies. So the typical
insurance policy has caps on the daily rate. It has caps on the
lifetime amount that will be paid out. So the insurance
policies do not address the extreme upper tail of costs,
leaving families exposed to that cost.
That is the part that needs to be covered, because, after
all, you do not need insurance--well, we have insurance for
eyeglasses, but you really do not need insurance for
eyeglasses. You need insurance when your house burns down, not
when you scorch your rug. And that is the analogy.
But insurance companies do not know what that long-term,
what that tail risk is, either, because, for example, suppose
we have improvements in the ability to keep people alive with
Alzheimer's. So rather than having ten years in a nursing home,
it now goes up to 15 or 20. The insurance companies do not know
how to price that. They do not know what the actuarial value is
of that and they do not know what the risk of that happening
is.
So there is a risk out there that nobody is willing to pick
up and to bear, and we do not know the price of that risk. That
was--the CLASS Act was supposed to address that issue, and, of
course, the CLASS Act was not successful. But that is a gap in
the insurance market that possibly public policy should be
addressing.
Senator Blumenthal. Thank you very much, and again, my
thanks to the panel and to our Chairman.
The Chairman. And just to underscore what Senator
Blumenthal has said, right now, this is about a $140 billion a
year problem, and in another 30 years, it is going to be a
trillion dollar problem. And of that trillion per year, it is
going to be about two-thirds of that paid by Medicare and
Medicaid. So, Dr. Petersen, another reason for you all to find
a cure, not even to speak of the heartbreak and the personal
stories, the cost.
Now, Dr. Hurd, I want to ask you cost, but from a different
angle. To take care of an Alzheimer's patient, it is usually
about $28,000 a year. A lot of the caregivers are the family
members that are the same age, and the average household income
of that age group over 65 is about $35,000 a year. So how are
the families going to manage the cost? Until we find the cure,
is it that we are looking at bankruptcy?
Mr. Hurd. The cost, of course, is spread over a number of
payers, and families spend what they are able to. But we--
families are facing bankruptcy. Families are facing
catastrophic out-of-pocket spending for reasons that I
mentioned previously. Right now, there is no effective way for
families in particular situations to avoid that. There are no
insurance products. There is really nothing that those families
can do except do the best they can, and it is a situation--it
is an insurable situation in principle where costs are enormous
for small numbers of people, less enormous for larger numbers
of people. But we do not have those insurance products.
The Chairman. To underscore what Senator Whitehouse had
said, we are spending over close to $6 billion a year on cancer
research and, of course, the budgets have been going backwards
on Alzheimer's research. It was about a half-a-billion dollars.
In the sequester, that was cut back. The President has come out
with his proposal, which is about a $100 million increase,
which should take it somewhere in the range of $600 million.
But that is a far cry.
Some experts have said that if you really want to make some
advances in finding the cure, that we ought to be spending $2
billion a year on research. Does anybody want to comment on
that?
Dr. Petersen. Well, I think that this is an appropriate
observation, and the funding that has been expended on cancer
research, on HIV/AIDS, on heart disease, presumably has been
effective, because the annual mortality, number of deaths per
year, in all of those disorders is, in fact, decreasing while
the number of deaths due to Alzheimer's disease, related to
Alzheimer's disease, is skyrocketing in the opposite direction.
So one would think that--again, I am not an economist, but
the investment of around $2 billion a year for research now
would pay back so many times over in terms of the savings that
Dr. Hurd has alluded to if, in fact, these costs could be
reduced. It makes sense that this is the investment that needs
to be made now.
The trouble is, this is a difficult time--you know better
than I--to make these kinds of statements. But, in fact, the
investment has to be made right now.
The Chairman. Presently, we have some assisted living
facilities that offer specialized memory care units. Dr. Hurd,
how do we go about having them properly regulated and how do we
let people know what is appropriate?
Mr. Hurd. Well, I wish I had the answer to that. You have
asked me something out of my area of scientific expertise. I
could give you an answer as an informed reader of the New York
Times or Wall Street Journal, but not as a scientific effort,
so maybe I should pass to Dr. Petersen or Dr. Moulds on that
one.
Mr. Moulds. I can take a little bit of a stab at it. So,
assisted living facilities are regulated by States, which
limits to a significant degree the Federal Government's ability
to intervene in the way that they are run. We certainly engage
in research in my office, for example, at the Administration on
Community Living, looking at best practices in these
facilities, looking at model regulatory policy. We share
practices across States. So there are those possibilities, but
it is one of those things that is largely controlled by States.
The Chairman. Do you think there is a Federal role for us
to try to ensure that these residential facilities are
providing the high-quality care?
Mr. Moulds. I would say that, certainly, where we have
levers, it would be an important area to be using those levers.
As I said, we have limited levers available to us now. We can
certainly share and push information and have not been shy
about doing that.
The Chairman. Do we have any leverage?
Mr. Moulds. As regulators, no, and there are--I mean,
insofar as they are Medicaid beneficiaries and Medicare
beneficiaries that live in some of these cases, we have--there
are potentially some hooks there. But, again, the facilities
themselves are regulated by the State.
The Chairman. Senator Collins.
Senator Collins. Thank you, Mr. Chairman.
Dr. Hurd, I am very interested in the research that you
have done on the costs, since many of us are aware of the
emotional toll that Alzheimer's takes and the horrible
suffering that the victims and their families endure. Around
here, you also have to look at the economics of a disease.
Now, given that cancer and heart disease, cardiovascular
diseases, are also age-related, could you give us a comparison
of the trend lines for those diseases in terms of costs versus
Alzheimer's.
Mr. Hurd. I cannot give those directly. The cancer and the
heart numbers that we came up with and cite in our paper come
from studies of the medical expenditure panel survey, and I
have not seen equivalent trends on those. But the defining
aspect, of course, of the cost associated with Alzheimer's and
dementia is it is age-related. Roughly speaking, the prevalence
doubles every five years beginning among people in their 70s,
and as the baby boom generation reaches those advanced old
ages, then we see the very large increases in prevalence and,
therefore, costs.
I would not think those same trends would pertain to cancer
and heart, where the age prevalence is not nearly so strong and
so striking, firstly. And, secondly, the baby boom generation,
the extremely large generation associated with those birth
years, will have passed through those critical years and now
are approaching the ages when Alzheimer's and dementia is so
prevalent.
Senator Collins. And, fortunately, and in part due to the
investments that we have made in research for those diseases,
we do have some treatments, means of delaying the onset, even
in some cases cures, and that is what is so troubling on the
Alzheimer's side, is that we can do so little.
Dr. Moulds, I cannot help but think that this is one of
those classic cases where an investment up front is going to
save our nation so much money in the long term, and when we
have Federal health programs like Medicare and Medicaid already
in financial trouble, already teetering in some cases, does it
not make sense to make that kind of investment in the hopes
that we can save money later in Medicare and Medicaid? I am
just talking about the economics. I am putting aside the
terrible human suffering right now.
Mr. Moulds. Sure, and absolutely, and you would get a
wholehearted agreement from both the President and the
Secretary on that statement. It does make sense to invest in
this now, which is why the President put forth the initiative a
year and a half ago now and reiterated it in his 2014 budget.
I will also add that there are, in addition to investments
in the research side, there are key investments on the
caregiver side that are incredibly important. One of the things
that we know, that the research has shown about caregivers--and
keep in mind that the best outcome for everyone, for a person
with Alzheimer's, for their loved ones and for the government,
is to enable a person with the disease to stay in their home,
be cared for by their family or other loved ones as long as
possible.
But what the research shows is that it is often fairly
small things that make those arrangements impossible, that lead
to a person with Alzheimer's disease needing to go into a
nursing home. So it is a sprained ankle or a thrown back or the
fact that they could not quite accommodate the job that they
are doing at the same time. So strategically placed
reinforcements for the people who are providing the care, very,
very important, as well.
Senator Collins. Well, it is also why we should not be
cutting home health care, because that can help people stay in
their homes and avoid far more expensive institutional care, as
well.
I guess my concern today is while I completely commend the
President for increasing Alzheimer's research by $100 million
in his budget and paying attention to the caregiver side, as
well, when we hear that the Council has advised that at least
$2 billion be spent, and I believe the number in the
President's budget is $564 million, we are a long ways away
from the recommended amount.
Now, I am also very cognizant of the budget constraints
that we are living under. But does the administration have a
plan for ramping up the amount, the investment in Alzheimer's
so that it is more on a pure level with the amount that we are
investing in AIDS or cancer or other serious diseases?
Mr. Moulds. I think you framed the challenges very well.
Certainly, the President and the Secretary recognize that this
is important on many different levels. They are absolutely
committed to funding this research going forward. I cannot
speak to Presidential budgets beyond the 2014 budget,
obviously, but I can testify about the imperativeness that both
of them see in moving forward with this agenda.
Senator Collins. When I look at the research levels, it
seems to me that there are two areas that are really
underfunded, and diabetes is one and Alzheimer's is another,
when you look at the costs that they are imposing on Federal
health care programs, not to mention the suffering they are
imposing on families across this country.
Let me just ask a couple more questions, if I have the
Chairman's indulgence.
The Chairman. Take your time.
Senator Collins. Thank you.
Dr. Petersen, one thing that we are going to hear is that,
let us say we could magically wave a wand and produce the $2
billion that has been recommended, which I would love to do.
What we are going to hear is the question, can it be spent
wisely? If the current funding level is around $470 million,
that is a huge leap, and we do not have--we cannot waste a
single dollar nowadays. Are the projects out there? Are the
clinical trials available? Would the money be well spent, or
would it be more productive to have the money ramp up and have
a plan over the next five years for what the funding level
should be so that researchers like you can know what is coming
and be prepared to spend this money very wisely?
Dr. Petersen. Well, I think that the research community is
ready to be able to absorb that and move ahead. But toward that
exercise, with the summit that was held at the NIH last May for
Alzheimer's disease, as I was indicating earlier, there was a
prioritization and a categorization of research areas and what
it would take in each of those fields. That has been translated
at the National Institute on Aging into certain concepts that
would be appropriate for research. That was approved by the
National Council on Aging, the National Advisory Council on
Aging, and that has been translated into RFAs, requests for
applications to the research community. They have been put out
and now there have been research grant applications that have
come in in response to that.
On May 1 and 2 this year, there is going to be a similar
summit for the non-Alzheimer's dementias, the frontal temporal,
the dementia with Lewy bodies, vascular disease. The same
exercise will be undertaken then, where the disease areas are
being brought out, categorized, the experts are coming
together, and a prioritization of research undertakings will be
made such that if the funding were available, here is where it
would go.
So I think the NIA is acting and the NIH is acting
proactively as if. Now, if that does not come to be, we have
got a problem. But I think people are thinking ahead because
there is the hope that either the ramping up or a large bolus
will come forward, and I think the research community would be
able to march forward very rapidly.
Senator Collins. Thank you.
My final question, Dr. Moulds, Dr. Petersen referred to the
international--I think there was an international conference
that was held. If we can coordinate efforts around the globe
for research, we have the potential to ensure that there is
faster progress. Could you update us on what is being done to
coordinate Alzheimer's research around the world as the
National Alzheimer's Plan Act envisioned?
Mr. Moulds. I would be happy to. As you know, because you
were instrumental in its passage, the NAPA legislation directed
us to develop structures to better coordinate these efforts
internationally.
There are a couple of different efforts underway at the
National Institutes on Aging. The first was the one that Dr.
Petersen referred to, which was the symposium where we did
international planning and looked at priorities in funding
projects moving forward. They have also developed a tool that
effectively allows countries and non-governmental entities to
input work globally that is going on so that everyone is aware
of work going on internationally.
There are a number of countries that have plans in place,
so in England, it is the Prime Minister's Dementia Challenge.
There has been an ongoing initiative in France. We have been
contacted by the Japanese, who are working on a plan. The
Koreans are working on a plan. This is an issue that is not
constrained to our borders. Many of those plans also include
research components and dollars that are dedicated to research.
So we are engaging at a couple of different levels. One is
a multilateral level, which are the planning activities that I
mentioned and the tools for engaging multilaterally. But we are
also engaging in a bilateral way. So we have frequent
conversations with the leaders of the plan.
In Britain, for example, many of the initiatives that are
part of their initiatives are starting--they are doing both
demonstrations and evaluations, so we share early results from
initiatives that are underway. We have the leader of the
British plan and the leader of the Canadian plan who are coming
to testify at the Advisory Council on Monday.
So this is a very global effort. This type of coordination
is going to be absolutely essential to maximize limited
resources. But there are many partners in this because as
populations age globally, this becomes more epidemic in all of
the nations that are facing these aging challenges.
Senator Collins. Thank you.
I want to thank our witnesses today. You were all very
illuminating and helpful to us. And most of all, I want to
thank our Chairman for holding this very important hearing. I
think it has been so heartening for the advocates who are here
today to get this update on the plan and on our personal
commitment, as well. I have worn this purple suit for many
years during the annual day that the Alzheimer's advocates come
to town, and I fear I am going to have to keep it around for
many, many more years and I would like us to get a cure so that
I can retire it once and for all.
[Laughter and applause.]
The Chairman. Well, it is very becoming.
Senator Collins. Thank you.
[Laughter.]
The Chairman. Dr. Moulds, we look forward to the receipt of
the new plan. When do you think that will be coming?
Mr. Moulds. So, we anticipate probably mid-May, but almost
assuredly sometime in May. As I mentioned, the second--this is
an annual process, so we are required by the statute to update
on an annual basis. The Advisory Council is charged with
providing recommendations to the Secretary, which we share with
Congress, as well, and post on our Web site. We have tried to
make this as both transparent and as public a process as
possible for numerous reasons.
So the recommendations are with the Secretary. We are
making great progress on the second iteration of the plan and
we anticipate that it would come out shortly after the Advisory
Council meeting, which is next week.
The Chairman. Well, we look forward to it, and if you would
rap the knuckles of OMB for delaying your testimony to me for
this hearing, I would appreciate it.
We are going to hold the record open for one week. There
are many advocates that I know want statements entered into the
record.
Anything more, Senator Collins?
Senator Collins. No. Thank you again, Mr. Chairman.
The Chairman. All right. Thank you.
The meeting is adjourned.
[Whereupon, at 3:43 p.m., the committee was adjourned.]
APPENDIX
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