[Senate Hearing 116-549]
[From the U.S. Government Publishing Office]
S. Hrg. 116-549
ALZHEIMER'S: NEW DIRECTIONS IN
BIOMEDICAL RESEARCH AND CAREGIVING
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HEARING
BEFORE THE
SPECIAL COMMITTEE ON AGING
UNITED STATES SENATE
ONE HUNDRED SIXTEENTH CONGRESS
FIRST SESSION
__________
WASHINGTON, DC
__________
APRIL 2, 2019
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Serial No. 116-05
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
47-532 PDF WASHINGTON : 2022
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SPECIAL COMMITTEE ON AGING
SUSAN M. COLLINS, Maine, Chairman
TIM SCOTT, South Carolina ROBERT P. CASEY, JR., Pennsylvania
RICHARD BURR, North Carolina KIRSTEN E. GILLIBRAND, New York
MARTHA McSALLY, Arizona RICHARD BLUMENTHAL, Connecticut
MARCO RUBIO, Florida ELIZABETH WARREN, Massachusetts
JOSH HAWLEY, Missouri DOUG JONES, Alabama
MIKE BRAUN, Indiana KYRSTEN SINEMA, Arizona
RICK SCOTT, Florida JACKY ROSEN, Nevada
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Sarah Khasawinah, Majority Acting Staff Director
Kathryn Mevis, 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 Robert P. Casey, Jr., Ranking Member 3
PANEL OF WITNESSES
Mary Dysart Hartt, Family Caregiver, Hamden, Maine; Accompanied
by Michael Hartt............................................... 5
Clay Jacobs, Executive Director, Greater Pennsylvania Area
Chapter of the Alzheimer's Association, Wilkes-Barre,
Pennsylvania................................................... 7
Sharon Fekrat, M.D., Professor of Ophthalmology and Associate
Professor of Surgery, Duke School of Medicine, Durham, North
Carolina....................................................... 9
Richard J. Hodes, M.D., Director, National Institute on Aging,
National Institutes of Health, Bethesda, Maryland.............. 11
APPENDIX
Prepared Witness Statements
Mary Dysart Hartt, Family Caregiver, Hamden, Maine; Accompanied
by Michael Hartt............................................... 37
Clay Jacobs, Executive Director, Greater Pennsylvania Area
Chapter of the Alzheimer's Association, Wilkes-Barre,
Pennsylvania................................................... 41
Sharon Fekrat, M.D., Professor of Ophthalmology and Associate
Professor of Surgery, Duke School of Medicine, Durham, North
Carolina....................................................... 45
Richard J. Hodes, M.D., Director, National Institute on Aging,
National Institutes of Health, Bethesda, Maryland.............. 51
Statements for the Record
Alzheimer's Impact Movement Assocation........................... 67
Slide presented by Sharon Fekrat, M.D., Professor of
Ophthalmology and Associate Professor of Surgery............... 70
Slides presented by Richard J. Hodes, M.D., Director of National
Institute on Aging and National Institutes of Health........... 71
ALZHEIMER'S: NEW DIRECTIONS IN
BIOMEDICAL RESEARCH AND CAREGIVING
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TUESDAY, APRIL 2, 2019
U.S. Senate,
Special Committee on Aging,
Washington, DC.
The Committee met, pursuant to notice, at 9:39 a.m., in
Room 106, Dirksen Senate Office Building, Hon. Susan M.
Collins, Chairman of the Committee, presiding.
Present: Senators Collins, Tim Scott, McSally, Hawley,
Braun, Rick Scott, Casey, Blumenthal, Jones, Sinema, and Rosen.
OPENING STATEMENT OF SENATOR
SUSAN M. COLLINS, CHAIRMAN
The Chairman. The hearing will come to order.
Good morning, and welcome to all the individuals, families,
and organizations from all across the country who have come to
our Nation's Capital to advocate for better treatments and
ultimately a means of prevention and a cure for Alzheimer's
disease as well as for more support for caregivers.
In the fight against Alzheimer's, you are the champions.
Your advocacy has ushered in an era of hope paired with action
against this devastating disease. Since we gathered last June,
through your diligent work, in a matter of months, we
successfully pushed the landmark BOLD Infrastructure for
Alzheimer's Act across the finish line.
Today this law marks a new public health approach for this
disease. It will promote early diagnosis and improve treatment
and care for millions for whom the disease is a reality day in
and day out.
The statistics remain stark. A new CDC report shows that
the rate of Americans dying from dementia has more than doubled
in our country since the year 2000. An estimated 5.8 million
Americans are living with Alzheimer's, costing our Nation $290
billion a year, including $195 billion in costs to Medicare and
Medicaid.
If we continue along this trajectory, Alzheimer's is
projected to claim the minds of nearly 14 million Americans and
surpass $1 trillion in costs by the year 2050.
While scientists and medical professionals are working hard
on an effective treatment and cure, recent clinical trials have
unfortunately ended in a string of failures.
Just last month, two more major trials targeting amyloid
deposits in the brain were halted. For decades, many
researchers have been targeting amyloid, the hallmark sign of
Alzheimer's disease.
Today, due to advancements in brain imaging, we know that
some people exhibit rampant amyloid plaques and yet never
develop the disease. While amyloid remains an important part of
ongoing research and I remain hopeful that the new trials
starting earlier in the disease process will produce better
news, the record funding that we have provided will allow our
medical researchers to pursue so many other promising
approaches.
I am delighted that last year, a bipartisan coalition, of
which every member on this Committee is a part, worked hard to
achieve a $425 million increase in Federal funding for
Alzheimer's research. That was the largest increase in our
Nation's history, and I can see Dr. Hodes smiling broadly at
that.
With our total investment at more than $2 billion for
Alzheimer's this year, we are on a strong path forward, and we
are not going to turn back.
This year, as we have before, I expect Congress to once
again reject the President's unwise request to cut the funding
for the National Institutes of Health.
The robust funding that Congress has provided is enabling
scientists to explore a myriad of new pathways that could lead
to earlier detection and potential therapies. From the ocular
and the cardiovascular to the genome and the microbiome to the
immune and the lymphatic system, researchers are leaving no
system unexamined and no cell unturned.
While we continue to forge ahead to accelerate biomedical
research, we face the reality that this disease is affecting
millions of American families. BOLD, now signed into law, marks
a milestone toward building the public health infrastructure we
need to better support individuals, families, and communities.
Support can make all of the difference. Tom O'Connor, a
caregiver from Portland, Maine, who is with us today, told us,
``When we got the diagnosis, we were shocked and did not know
where to start.''
When he was referred to community partners, he received the
information he needed and was able to put a plan in place to
make the time ahead better for himself and for his wife, who is
battling Alzheimer's.
Diagnosis is the first step that can empower individuals
and families to understand changes in the brain, but developing
a plan for care can make the journey so much better. Care plans
can also help to reduce comorbidities, prevent
hospitalizations, and improve life not only for those living
with the disease, but also for their caregivers.
As the BOLD approach spreads to communities across America,
we must continue to develop Federal policies to better support
all Americans with Alzheimer's and their families.
Last year, I heard from constituents facing early onset
Alzheimer's that it can be difficult to access necessary
supports simply due to not meeting the age thresholds for
various Federal programs.
This year, I am leading the reauthorization of the Older
Americans Act along with my Ranking Member, Senator Casey.
Last week, I introduced a bill that would ensure that key
services in the Older Americans Act, such as the National
Family Caregiver Support Program, will also serve those with
Alzheimer's who are younger than age 60.
Whenever I ask family caregivers, which included my own
mother, about their greatest needs, the number one, request
that I hear is for more respite care. Today, I am also
introducing the Lifespan Respite Care Act with Senator Tammy
Baldwin to help communities and States provide respite care for
families.
From accelerating research to advancing care, every year
that we gather as one sea of purple, we make waves, and by the
way, I want to thank Michael Hartt for giving me a sash today
to wear. Thank you, Michael.
From accelerating research to advancing care, we are making
progress. While Alzheimer's robs our loved ones of precious
memories, I stand with you to do everything we can to make
Alzheimer's itself a memory 1 day.
Thank you. I am not delighted to turn to another fierce
advocate for research for this disease, the Ranking Member,
Senator Casey.
OPENING STATEMENT OF SENATOR
ROBERT P. CASEY, JR., RANKING MEMBER
Senator Casey. Thank you, Chairman Collins, for, of course,
holding this hearing today, one of the highlights of the year
in terms of hearings. I do not know of a hearing throughout the
year that has this much energy and enthusiasm and this kind of
a crowd and that kind of applause.
I also want to thank Chairman Collins for her enduring
leadership in the fight to find a cure for Alzheimer's disease.
I want to extend our gratitude as well to all the advocates
in the room today, all of the caregivers, family members who
have traveled across the Country to be in this hearing room
with us today.
Few American families are unaffected by this vicious
disease. Indeed, over 5.8 million people over the age of 65
currently live with Alzheimer's disease. Approximately 280,000
of those people are Pennsylvanians, and those number are
rising.
We know that the impact it has on the person diagnosed, but
also the impact on their family can be devastating, and that
is, of course, an understatement.
We must support efforts to find a cure.
I am pleased every year to be able to lead the
appropriations letter in the Senate with Senator Burr to
advocate for more research funding at the National Institutes
of Health and to join Chairman Collins in ensuring robust
funding for Alzheimer's disease research and in this case, of
course, specifically in her work on the Appropriations
Committee, and we commend her for that.
Until there is a cure, we must do everything in our power
to make sure that people receive the best possible care, so we
focus on both finding a cure, but also on ensuring quality
care.
We know that this disease impacts different people
differently, so our efforts must take into account people who
are diagnosed at younger ages, people with disabilities, people
from diverse backgrounds, and people living in both urban and
rural settings.
For example, people who are diagnosed at younger ages and
are still working may have difficulty knowing where to turn for
help because many essential supports are more commonly
advertised to seniors. That is why I joined with Senator
Collins, Senator Jones, who is with us today, Senator Capito in
introducing the Younger-Onset Alzheimer's Disease Act to ensure
that people younger than age 65 have access to counselors and
support groups to help them navigate the health care system and
plan for their long-term care needs.
A subset of the people diagnosed at these younger ages are
of course people with disabilities. For example, nearly half--
half--of all people with Down Syndrome will develop Alzheimer's
disease in their lifetime; 30 percent of these Americans will
be diagnosed before the age of 50.
Research and clinical trials must include people with
disabilities to ensure their needs are met in the quest for
treatment and a cure.
I would like to thank Senator Collins again for agreeing to
work with me on policies that would address this specific
disparity among people with disabilities.
We also know that African Americans are two times--two
times more likely than their white counterparts to develop
Alzheimer's disease, and the Hispanic and Latino populations of
America are one and a half times more likely to develop
Alzheimer's disease. We must understand why and what can be
done about those issues.
People living in rural areas may not live near a major
medical center or a research facility, which makes it harder
for them to participate in research studies or clinical trials.
We must tackle this disease from every angle, from
continuing our research for a cure to ensuring medical
professionals and community organizations can provide the best
care possible to every American with Alzheimer's disease.
I look forward to our witnesses' testimony today and the
important conversations we will have. Thank you very much.
The Chairman. Thank you, Senator Casey.
Before we turn to our great panel of witnesses, we are
going to start with a video so that we can hear directly from
people around the country who are living with Alzheimer's.
I want to thank the Alzheimer's Association for providing
us with their voices.
[Video played.][Video may be viewed at aging.senate.gov/
hearings]
Those thoughts about diagnosis and insights about the path
forward will help to frame our discussion today.
Now I am pleased to turn to our witnesses. First, I am
delighted to welcome from the great State of Maine, Mary Dysart
Hartt and Michael Hartt, former business owners from Hampden,
Maine.
Today Mary is the caregiver for her husband, Mike, who was
diagnosed 4 years ago at the age of 62. Now, Mrs. Hartt is
known across the State of Maine for her famous Pies for a
Purpose, which are Purpleberry pies. Yes, they are baked and
sold to raise awareness about Alzheimer's.
Mrs. Hartt has been honored as Restaurateur of the Year by
the Maine Restaurant Association. She is also a photographer
and a runner, and next month, she will run in the Boston
Marathon and is fundraising for Alzheimer's research.
Next, I would like to turn to our Ranking Member to
introduce our witness from the Commonwealth of Pennsylvania.
Senator Casey. Thank you, Chairman Collins.
I am pleased to introduce Clay Jacobs. Clay is the
Executive Director of the Greater Pennsylvania Chapter of the
Alzheimer's Association. Clay is from North Abington Township,
which happens to be Lackawanna County, where I live. It had
nothing to do with is presence here today, but it certainly
helped.
Clay's wife, Becky, is also with us today. We are grateful
that Becky took the time to travel to Washington.
Clay is a graduate of a great Pennsylvania institution of
higher education, Westchester University. He also told me
earlier that he is a graduate of Abington Heights High School.
In his current position, Clay works to support people
living with Alzheimer's disease and their families through
direct services, support, and education programs.
I also want to welcome the large contingent of advocates
who are in the audience today from Pennsylvania and across the
country. Thank you for making the journey to be with us, and,
Clay, thank you for being with us today. We look forward to
your testimony.
The Chairman. Our next witness, Dr. Sharon Fekrat, is a
professor of Ophthalmology and associate professor of Surgery
at Duke University School of Medicine. She also serves at the
Durham VA Medical Center. She has coauthored more than 130
publications in medical journals and 45 textbook chapters.
Finally, we will hear from Dr. Richard Hodes, the Director
of the National Institute on Aging at the National Institutes
of Health. Dr. Hodes will provide an overview of the
advancements in Alzheimer's research across the NIH and discuss
partnerships with industry to accelerate therapies. He will
also share new NIH research on supporting caregivers.
I want to thank you all for joining us, and we will start
with Mary Hartt.
STATEMENT OF MARY DYSART HARTT, FAMILY CAREGIVER
Mrs. Hartt. Thank you, Chairman Collins.
The Chairman. We are going to have your mic turned on for
you.
Mrs. Hartt. I had a plan, and then I did not do it.
Chairman Collins, Ranking Member Casey, and members of the
Committee, thank you for the opportunity to testify about my
experiences as a caregiver for my late mother and now my
husband, Mike, who is currently living with Alzheimer's
disease.
Mike was diagnosed at age 62. My hope is that, in sharing
our story, others who are impacted by this disease will feel
less alone and understand that with proper supports, there is
life after a diagnosis.
Mike was 58 when I started noticing that things did not
seem quite right. After living on our family farm since 1977,
daily tasks like running the tractor became a challenge. During
that same time, I was part of a family care team caring for my
mom who was living with dementia. She was a brave woman who
started our family owned business, Dysart's, with my father 52
years ago, and for 52 years, our business has been open 24/7,
so you can gather how brave she was to start that.
My two brothers and I are very proud to have carried on our
parents dream into the third generation. I began to see
similarities in the challenges both Mike was facing and decided
to reach out to our family doctor who agreed to help me monitor
Mike for changes. For 4 years, we continued on this path, with
things coming to a head when Mike was 62 and agreed to be
tested.
After incorrectly being diagnosed with frontotemporal
dementia, or FTD, we received a diagnosis of younger-onset
Alzheimer's from Mass General Memory Clinic in Boston. We are
so thankful for the care we received at Mass General, and
following the diagnosis, our lives changed significantly.
Mike had owned a business that manufactured log homes. He
was our money manager. After the diagnosis, we sold our farm
where we had lived for nearly 40 years and simplified our life.
The farm had a half-mile-long driveway, and it snows
occasionally Maine.
At 63, Mike volunteered to give up driving, a freedom that
he really loved.
Before Mike was diagnosed, we were not familiar with
younger-onset Alzheimer's disease but had had some knowledge of
Alzheimer's and dementia through the experience of caring for
my mother.
One common assumption about this disease is that life
completely stops. While we have faced unique challenges as we
have tackled this disease, we continue to move forward with our
lives as best we can.
In just 2 weeks, as Senator Collins says, I am going to be
running the Boston Marathon with a charity number for the
Alzheimer's Association to help rid the stigma of this disease.
Too often, Alzheimer's is talked about in terms of cognition
and memory, but it is much more.
In Mike, I see it affect his emotions and temperament. If
someone is diagnosed with cancer, people automatically rally
around to offer support and guidance. An Alzheimer's diagnosis
is sadly not the same, but there is nothing to be ashamed
about. We cannot hide behind a diagnosis if we want to make
progress.
The staff at Mass General made clear that this disease is
something that is meant to be taken day by day, to be
approached with humor and a grasp of reality. Our doctor told
us, ``Do not worry about tomorrow. Enjoy today.'' That is how
we have chosen to live our life.
Thanks to our providers and the support we received at the
Alzheimer's Association, Maine Chapter, we have begun
fulfilling wishes on our bucket list. Lucky for Mike, most of
them have been fishing adventures. After more than 40 years of
marriage, I took Fly Fishing 101, but I cannot out-fish him
yet.
However, I know these adventures are not typical for
everyone, especially those without a care plan. For us, this
plan came in pieces and with the help of our team of care
providers at Mass General.
Mike's diagnosis at 62 was a shock, but working with the
team of care providers gave us time to talk through the reality
of the situation and plan for the challenges that lie ahead.
We continue to have regular visits, and at our last
appointment, we had the conversation about giving up power of
attorney, something I would never have thought to seek but was
part of our plan.
Thank you, Chairman Collins, for introducing the Improving
Hope for Alzheimer's Act. It will make a difference in the
lives of people living with Alzheimer's disease and other
dementias and their families.
I think a lot about how lucky we have been in our life to
be able to care for ourselves in this next phase. For many
people with younger onset, that is not the reality. The
services and supports----
[Mr. Hartt points to timer.]
I think he is giving me a time.
The Chairman. He is doing my job.
Mrs. Hartt. There you go.
The services and supports that are there for those 60 years
and older are vast compared to those that are available to the
population in the Alzheimer's and dementia community who have
not yet reached that age.
Thank you, Chairman Collins, Ranking Member Casey, Senator
Jones, and Senator Capito for leading the Younger-Onset
Alzheimer's Disease Act, which would help those with younger-
onset with supports and services.
Throughout the last few days, Mike and I have joined our
Alzheimer's Association, Maine Chapter, along with 12,000
advocates from across the Nation to make a difference in our
Nation's Capital.
I am here today because I am the wife, caregiver, friend,
and daughter of Alzheimer's. We all are, and we must remain a
strong and a resilient voice for those who have lost theirs.
Thank you very much.
The Chairman. Mary, you and Mike are truly an inspiration,
and I thank you both for being here.
Mr. Jacobs.
STATEMENT OF CLAY JACOBS, EXECUTIVE DIRECTOR,
GREATER PENNSYLVANIA AREA CHAPTER
OF THE ALZHEIMER'S ASSOCIATION,
WILKES-BARRE, PENNSYLVANIA
Mr. Jacobs. Chairman Collins, Ranking Member Casey, and
members of the Committee, I am Clay Jacobs, and I am the
Executive Director of the Greater Pennsylvania Chapter of the
Alzheimer's Association.
Thank you for the opportunity to testify before the
Committee on how we are working to support persons living with
Alzheimer's disease, related dementias, and their families.
Currently, 5.8 million Americans are living with
Alzheimer's, and without significant action, nearly 14 million
may have the disease by 2050. More than 16 million unpaid
caregivers are supporting and caring for these individuals at a
cost of $234 billion. In my home State of Pennsylvania, 280,000
older individuals have Alzheimer's today, and in just a few
years, 320,000 will likely be affected.
Among the millions of individuals living with Alzheimer's,
we know that there are communities who are disproportionately
affected but remain underserved. Older African Americans are
approximately twice as likely to have Alzheimer's or other
dementias as older whites, and older Hispanics are about one
and one half times as likely to be affected.
Another population that is often under-recognized and
underserved is the approximately 200,000 individuals under the
age of 65 who have younger-onset Alzheimer's disease. The need
to reach everyone affected will grow significantly in the
coming years, and the Alzheimer's Association is working to
reach as many of those people as possible.
Alzheimer's is also a local disease, and our nationwide
network of chapters serve to respond to the specific needs in
their communities.
To address the unique challenges of younger Pennsylvanians
living with Alzheimer's, we offer early stage education and
support groups throughout the Commonwealth to promote social
engagement in local communities by partnering with museums,
local tourism boards, libraries, and other organizations.
We also work with the Pennsylvania Department of Aging to
train facilitators for memory cafes and a variety of other
services.
In spite of these efforts to support this population, we
know that they simply do not have access to many of the
services they need.
The Alzheimer's Association is grateful to Chairman
Collins, Ranking Member Casey, Senator Jones, and Senator
Capito for introducing the Younger-Onset Alzheimer's Disease
Act.
To reach other underserved populations in the Pennsylvania
Chapter of the Alzheimer's Association, we conduct faith-based
outreach and community education in partnership with a large
African-American sorority, Alpha Kappa Alpha. We have recruited
and deployed Spanish-speaking volunteers for health fairs,
education programs, and support groups.
We have actually had the great pleasure of working with
Ranking Member Casey's staff on a number of these efforts.
With our local area Agency on Aging, we work to reach
Chinese, Korean, and Vietnamese organizations, attending their
meetings and health fairs, working with interpreters when
needed.
I would actually like to share an example of how important
it is to reach the variety of communities impacted by
Alzheimer's and why outreach matters.
Ruben Deoleo was born in the Dominican Republic. He moved
to Pennsylvania in his 20's to serve as a minister, a drug and
alcohol counselor, and a motivational speaker for the Dauphin
County Prison. Memory problems, however, began to affect his
life's calling. After losing several jobs, his wife, Rosayna,
asked Ruben to see a doctor. For over 2 years, they grappled
with what was happening and, just 4 months ago, he was
diagnosed with Alzheimer's at the age of 58. They struggled
with the diagnosis and, in particular, the fact that it was an
untreatable illness.
However, when Ruben learned about an Early Stage Engagement
group at Lancaster General Health-Penn Medicine and that other
individuals living with the disease cope and can live well, he
decided to fight back. Ruben has a sense of purpose as a member
of the group. He is energized, and he wants to create the same
opportunities for others. He is now a volunteer for the
chapter, helping the Spanish-speaking community to understand
Alzheimer's and the resources that are available. Ruben is
getting valuable support while also reaching others.
A constant theme throughout all of our outreach is the
importance of care planning after diagnosis. It is essential to
learning about medical and non-medical treatments, clinical
trials, and support services. These services result in fewer
hospitalizations and emergency room visits and a higher quality
of life.
This is also true for caregivers, who too often find
themselves as the plan, with little support after diagnosis.
The association was grateful for the support of Members of
Congress who sponsored or cosponsored the HOPE for Alzheimer's
Act in the 114th Congress and to the Centers for Medicare and
Medicaid Services for now covering care planning services.
However, access to services remains an issue. That is why the
association supports the Improving HOPE for Alzheimer's Act,
which would help educate clinicians on Alzheimer's and dementia
care planning services through Medicare.
We are grateful to Senator Collins for her leadership on
the legislation.
Thank you for your time and for the invitation to be here
with you today. I am happy to answer any questions.
The Chairman. Thank you for your testimony.
Dr. Fekrat.
STATEMENT OF SHARON FEKRAT, M.D.,
PROFESSOR OF OPHTHALMOLOGY AND ASSOCIATE
PROFESSOR OF SURGERY, DUKE SCHOOL OF MEDICINE,
DURHAM, NORTH CAROLINA
Dr. Fekrat. Thank you, Chairman Collins, Ranking Member
Casey, and members of the Committee for the opportunity to
testify and share some very exciting multidisciplinary and
collaborative work on one of the most important health issues
of our time, Alzheimer's disease, the societal and cost impact
of which you are well aware.
My name is Dr. Sharon Fekrat, and I am a retina surgeon at
the Duke University School of Medicine.
Alzheimer's disease is the leading cause of dementia
worldwide, yet its early detection remains challenging. The
high cost of MRI, the limited sensitivity and specificity of
genetic and serum markers, and the invasiveness of PET imaging
and spinal fluid sampling limit our ability to detect
Alzheimer's early.
Alzheimer's has a 20-year relatively asymptomatic period of
neuropathogenesis, there is growing interest in identifying
Alzheimer's at asymptomatic stages for earlier clinical trial
intervention to ultimately identify medications to delay the
onset of, prevent, or even reverse Alzheimer's. We need rapid,
easily accessible, inexpensive, noninvasive, yet accurate,
diagnostic techniques to screen for Alzheimer's.
The task before us is not insurmountable. If a human being
can walk on the moon or live in a Space Station, then we can
find a means of diagnosing Alzheimer's earlier and subsequently
identifying effective therapeutic interventions.
This requires collaborative teamwork across disciplines and
institutions, innovative critical thinking, and going out on a
limb where the fruits are.
Look at the eyes of the person next to you. You see the
colored iris and dark circular pupil. Yet there is so much more
there than meets the eye. Behind the pupil, there is the
wallpaper lining the inside of the eyeball called the retina.
The retina wallpaper is the film of the camera. It is nerve
tissue and a direct extension of our brain. The retina shares
many structural and functional similarities with the brain.
Spinal fluid biomarkers for Alzheimer's such as tau and amyloid
have been found in the vitreous gel behind the pupil, and
levels correlate with cognitive test scores. Amyloid has also
been detected and imaged in the retina.
The neurodegenerative process in the brain also occurs in
the retina with thinning of certain retinal layers. Changes in
the retina and its small blood vessels may mirror, or even
precede, detectable changes in the brain and its small blood
vessels.
Imaging the retina in Alzheimer's, however, is not new.
Color photographs of the retina in Alzheimer's show decreased
retinal vein diameters, blood vessel branching complexity, and
tortuosity. Recent imaging advances now allow us to evaluate
the retinal microvasculature with unprecedented detail on the
order of 5 microns, not even the width of a human hair, using
new technology called OCTA which takes almost 70,000 scans per
second to look at the very small retinal blood vessels.
With this FDA-approved imaging technology, we can now take
pictures of the retina through an un-dilated pupil quickly,
noninvasively, inexpensively, and reproducibly at high
resolution.
Several research groups, including our group at Duke, are
exploring how this technology along with other retinal imaging
methods can be used to diagnose preclinical Alzheimer's.
We recently completed the largest prospective study using
this technology, OCTA, of 70 eyes with Alzheimer's, 72 eyes
with mild cognitive impairment, or MCI, and 254 eyes from
cognitively healthy adults. We found decreased retinal blood
vessel density and thickness in one of the retinal layers in
Alzheimer's compared to MCI and compared to controls, even
after adjusting for age, sex, and education.
A larger sample size may be needed to detect the difference
between MCI and controls because of the varied spectrum of MCI.
Our study adds to the published literature and improves our
understanding of the smallest blood vessels in Alzheimer's.
Right now, these tests cannot be used to solely diagnose
Alzheimer's, but this is the beginning of something big.
Before these tests are ready for prime time, the findings
must be validated in larger and diverse populations. The goal
is to obtain multimodal retinal images that would result in a
suite of biomarkers that could predict the risk of Alzheimer's
and stratify the stages of disease, similar to getting a
cholesterol panel and being able to determine your risk of
heart disease.
The potential impact on early detection and clinical trial
results is motivating. We are building multidisciplinary and
multi-institutional teams and forging relationships with
industry to move forward. We are collecting longitudinal data
to assess changes over time, imaging genetically predisposed
asymptomatic persons, using images for artificial intelligence,
and collecting retinal images globally to store in a central
registry for researchers to access.
Our eyes may indeed be windows to our brain health.
Thank you for your efforts to support those working to find
the way forward, which in turn supports those with Alzheimer's
disease and their families. Time is of the essence.
The Chairman. Thank you very much for sharing your
research.
Dr. Hodes, welcome back. We are delighted to have you join
us again this year.
STATEMENT OF RICHARD J. HODES, M.D.,
DIRECTOR, NATIONAL INSTITUTE ON AGING,
NATIONAL INSTITUTES OF HEALTH, BETHESDA, MARYLAND
Dr. Hodes. Thank you, Chairman Collins and Ranking Member
Casey and members of the Committee for the opportunity to be
here and share the basis for the hope which we now have as a
result of research through support that comes from you and
looking forward toward research accomplishments, recent and
future, and I will try to do justice to the scholarly
introduction that Senator Collins provided of the research that
is now ongoing.
If we look at the next slide, just to illustrate the
magnitude of increase and support that has come from
congressional appropriations of around $600 million in 2016
through what you see is a total of $1.9 million in 2018 and
2019, the current year, if we add the appropriations and
estimate the total, this would be approximately 2.3-to $2.4
billion, an extraordinary increase.
Importantly, it has energized and excited the research
community. It has led to the recruitment of a large number of
new investigators, people who are trying to tie the directions
they would place their wisdom and their careers and now take it
to the important cause of Alzheimer's research.
It has led to the current support by NIA of approximately
140 clinical studies and trials. Some of these are in the
important area alluded to, trials to identify the most
effective means of providing support, care, and services to
those already affected. Others are a diverse set of trials
looking at the strategies for prevention, cure, treatment of
disease.
Some number of those are non-pharmacologic, looking at
interventions such as exercise, diet, cognitive training, or
combinations of them.
If we look at the next slide, an example of the number and
diversity of pharmacologic studies undertaken, this illustrates
here at various stages of drug discovery, drug development,
then their implementation in early stage clinical trials, and
finally, the more advanced stage III clinical trials, and the
colors are intended here to show the number of trials attacking
different categories of targets.
Alluded to, was amyloid, which remains an important area of
research where failures have occurred in attempts to treat at
later stage of disease by targeting amyloid, where hope
remains, and additional trials are targeted at looking at early
intervention.
Notably, as commented upon, the availability of biomarkers
that now detect disease years to decades before symptoms means
we can make a difference by targeting interventions not only of
people who need them or had the disease but those for whom
prevention is important before the onset of substantial damage
to neurons and their connections within the brain.
In the next slide, you see a summary of what we have just
shown in color to make it simply evident that the numbers of
trials targeting amyloid, in gray, is far exceeded by those,
the diversity of targets that you see here, so if some 32
trials are currently ongoing, only 13 are now targeted toward
amyloid.
The diversity comes from a variety of basic studies, new
methods for identifying genetic, molecular underpinnings of the
processes that occur in Alzheimer's, amyloid and other, are
translated into new targets for intervention.
Most recently, in public-private partnerships with pharma,
biotech, academic institutions, in a new spirit of big data and
open data, these findings, the large data, then computational
analyses have led to the discovery of new potential targets
recently published, a wall of targets, some 100 candidate,
best-consensus candidates for future studies, which will now go
into the pipeline in development for ultimate clinical trials,
giving us hope and expectation with these multiple approaches
that will do far better in making advances toward treatment,
cure, and prevention.
In the next slide, this is just an illustration of the pace
of advance in one of the areas of basic science. This is in
genomics. If you look at the discovery of genes, which are
associated with either a higher risk of Alzheimer's or a lower
risk, that is, protective factors, you can see year by year,
the increase in number of genes there.
Just to note, in 2018, that large list of genes is more
than has been discovered, had been discovered in all the
preceding years. They are color-coded here, hard to see, I
know, but meant to illustrate that the genes are not random but
fall into patterns which give us ideas of the targets--vascular
and areas of protein transport and inflammatory pathways--and
each and every one of these discoveries, again, gives us a new
clue in terms of directions to take for cure and prevention.
Finally, in the next slide, it just illustrates, once
again, the importance of providing research, evidence-based,
identification of the best strategies for care and caregiving
for those who are affected with disease. Just as we hold
summits bringing together the best science for cure and
prevention, we do the same in the area of care and caregiving,
and this will continue.
The first prize under the 21st Century Cures authorized is
in fact a prize to identify an app to help in navigating the
often complex and challenging situation for those who are
looking to find a way through the resources available and those
lacking as they pursue care and caregiving.
With all of this, with the inspiration we have from the
appropriations from you, the inspirations of those here in the
room, the hope provided by the cadre of investigators now
studying disease, the courage shown by those who participate in
clinical trials, with all of this we reinforce the hope we have
for a future that will take us toward an end of Alzheimer's
disease.
Thank you.
The Chairman. Thank you very much for that hopeful
testimony.
Mrs. Hartt, I am going to start with you. You talked about
the difficulty that you and Mike had in obtaining an accurate
diagnosis. That is one of the reasons I am so interested in the
research that Dr. Fekrat is doing, which might make that much
easier for you.
Initially, you knew something was wrong, and Mike underwent
a series of tests. You got a diagnosis that was not correct
originally, and I am curious how knowing the accurate diagnosis
helped you both cope with the disease.
Mrs. Hartt. Knowing the accurate diagnosis helped us cope
by being able to make a plan. We were at that point able to
digest that this is what was going to be, and as I said, we
simplified our life. We began to say what can Mike do, and we
just came together about what did he want to do, what could he
do.
I got my job that I have always loved. I kind of started
working less, and then I retired, which is a big move to do,
and when I was sitting on the beach this winter, I began to
wonder why am I missing my job, but, you know--but we have been
absolutely taking the approach of saying today is a great day,
and we are going to enjoy it.
The Chairman. That is a great attitude to have.
Mike, what was the most difficult decision that you had to
make once you received your diagnosis?
Mr. Hartt. I never was one to look for help from anybody. I
always found my own way, and it is hard to depend on somebody
else.
The Chairman. I think that is very true, and I appreciate
you sharing that with us.
Dr. Hodes, we know now that Alzheimer's disease has proven
to be far more complex than we had hoped, and research teams
around the country and the world are working to better
understand this disease.
The Alzheimer's disease Precision Models Center is one such
cross-country partnership, and through this center, I am proud
to say that scientists at Jackson Laboratories in Bar Harbor,
Maine, are developing mouse models for Alzheimer's, and data
are shared with the Indiana University for clinical use and
also with Sage Bionetworks in Seattle for public use.
This data sharing, I think is so important. Particularly if
the Federal Government is funding these projects, it seems to
me that the more data sharing the better, so what specifically
is NIH doing to foster that kind of collaboration and data
sharing that could help us advance the research?
Dr. Hodes. Thank you very much for asking about this very
important aspect, and I am proud, happy, excited to say that
the culture around Alzheimer's research in particular has been
a model in terms of the appreciation for the need for data
sharing.
Large and larger datasets, rather than being hoarded,
guarded, and reported by individual laboratories, are now being
analyzed with increasing power due to the numbers of these data
and an open analysis for all of those who want to lend their
wisdom to it.
NIH in fact now has a policy that insists upon sharing as a
condition of award. We monitor it carefully, but I am again
most pleased to say this has become a part of the spirit of
science, and it is consistent with our regulations but requires
very little push. I think science has come to realize that all
researchers--public gain by an optimization of a sharing of
data toward common goal.
The Chairman. Thank you.
Let me followup also by asking you--the last time you
testified you said that we did not know how to present the
disease, and I know if there were a pill that we could take to
promote brain health that every one of us would want it. Has
there been any progress since the last time you testified on
the prevention side?
Dr. Hodes. Yes. Thank you again for the question.
The study referred to, last reported, was an exhaustive
review of the literature carried out by the National Academies
of Science, Engineering and Medicine, which found that there
was encouraging but no inclusive evidence for interventions
that would significantly slow cognitive decline or decrease the
risk of dementia.
Since that time, there was a great deal of excitement about
the report, of a study, SPRINT and SPRINT MIND. Now, the SPRINT
trial was going to see the effect of reducing blood pressure to
140, which had been a previous target, or 120, a more
aggressive target for controlling blood pressure.
The trial itself was stopped prematurely for ethical
reasons because of the more aggressive decrease in blood
pressure had impact on survival, on cardiovascular disease, but
we had initiated in concert with that study monitoring of brain
imaging, of cognitive function, and we are pleased to see the
interpretation released just a few months ago that the more
aggressive control of blood pressure was associated with a
significant decrease in mild cognitive impairment, an often
precursor of dementia.
These studies will continue, but they now for the first
time identify a specific intervention, evidence based in a
randomized control trial, for something that can prevent
cognitive decline often associated as a precursor of dementia.
The Chairman. That is good news. Thank you.
Senator Casey. Thank you, Chairman Collins.
We all know that our aging population is growing a lot more
diverse, and as I mentioned in my opening statement, the rate
of dementia among both African Americans and Latino Americans
is already high and actually on the rise.
Both groups are severely underrepresented in research and
in clinical trials, and many in these communities lack access
to high-quality diagnostic treatment and support services.
I will start with Clay Jacobs for this question. Clay, you
mentioned in your testimony, you made reference to volunteers
that the association recruits to reach out to these underserved
populations. Could you provide details on two things? One is
who these volunteers are, and I know you have provided some in
your opening.
The second part of it is if you could provide information
about the importance of educating people about their options
for enrolling in clinical trials.
Mr. Jacobs. Thank you for the question, Senator.
To reach members of underrepresented and underserved
communities, the Alzheimer's Association has launched several
recent initiatives that resulted from input and feedback from
people in those very communities. We are recruiting volunteers
to engage with faith and Spanish-speaking communities. The
association has partnered with the Mexican Consulate to engage
in the Hispanic and Latino communities with information on
Alzheimer's detection, diagnosis, care, treatment, research,
and access to culturally appropriate resources.
In collaboration with the National Hispanic Council on
Aging, we are building a network of ``promotores,'' or
community health workers, who deliver Alzheimer's education in
Latino communities and help connect people to resources and
services in Spanish.
With regard to clinical trial recruitment, it is critical
that we are aggressive in pursuing a therapy since Alzheimer's
is one in the top ten causes of death without a proven way to
prevent, treat, or slow progression. Therefore, we must have
robust clinical trial participation.
In Pennsylvania, the Delaware Valley Chapter is a member of
the University of Pennsylvania's African American Family
Advisory Council to help guide their efforts and provide
feedback on increasing diverse participation in clinical trial
enrollment.
Another great example is in Pittsburgh with the Alzheimer's
Disease Research Center. We offer support groups, community
education events, community research presentations, and more
things based in communities to try and increase clinical trial
recruitment and overall engagement with the community, but with
a specific focus on African Americans in southwestern
Pennsylvania.
The Chairman. Thanks very much.
Dr. Hodes, I am going to turn to you as well, as Senator
Collins did. She has referred to 200,000 people having younger
onset Alzheimer's disease. That is where we have the bill, the
Younger-Onset Alzheimer's Disease Act, that we are working on
together to ensure that this population can receive the
supportive services through a vast network of programs funded
by the Older Americans Act.
As I mentioned in my opening, I am also concerned about the
overlap here of people with disabilities, specifically those
with down Syndrome, who are diagnosed with Alzheimer's disease
at younger ages.
Can you share with the Committee how researchers are
working to include people with disabilities in research related
to both Alzheimer's disease and also related dementias?
Dr. Hodes. Certainly, Senator.
First, to touch upon the emphasis you placed on early onset
Alzheimer's, an important area--and there is in fact now a
LOADs, a longitudinal study for analysis of early onset
Alzheimer's disease, that is designed to do just as you
described. I understand those people, the burdens they face,
also the potential for underlying differences in the biology of
early onset disease. That study began last year and is accruing
patients now.
In terms of Down Syndrome, we have, together with the
National Institute of Child Health, been working for some years
to try to understand the high risk of Alzheimer's-like dementia
alluded to in individuals with Down Syndrome.
There has been now ongoing a longitudinal study which takes
people that range from childhood into adulthood to look over
time at the progression of cognitive function, of biomarkers,
imaging and other to try to understand the nature of the
progression of disease that occurs in these individuals, both
to help people with Down Syndrome, but also in the spirit of
informing all of us about Alzheimer's at large. It has been an
exciting and inspiring community to work with, and we look
forward to furthering and expanding that effort.
Senator Casey. Thank you, Doctor. Chairman Collins, I am
going to be jumping to a hearing, but I will come back, so, if
we have a second round, I will have some more questions. Thank
you.
The Chairman. Thank you.
I want to explain to our audience that we recognize members
in the order that they come and then alternate sides, although
on this disease, there is no side. It is a joint effort.
Senator Braun is next.
Senator Braun. Thank you, Madam Chair.
This question is for Dr. Hodes, and it is going to be
related to the FDA.
This malady and many others, it seems like it takes so long
to get through the approval process, and as illusive and vexing
as progress has been, I would like your comments on things like
mid-stage clinical trials and approval. In general, do you
think that we need to look at some reforms to get things more
quickly through the approval process, where you err a little
bit on the side of giving the benefit of the doubt to getting
these things to market more quickly as opposed to what seems to
me to be kind of a laborious process that is overregulated and
maybe counterproductive to getting to the finish line? A
comment on that and any reforms in general as it would relate
to the FDA involvement in Alzheimer's drugs.
Dr. Hodes. Well, Senator, I would reflect that our own
interactions with the FDA have found them to be very collegial,
collaborative, and open in concept to the idea that endpoints
for clinical trials and Alzheimer's in particular, the long-
term disease with the slow rate of progression or symptoms,
could be based on progression and change in rate of progression
of surrogate or biomarkers if they could be clearly defined as
reflections of the pace of disease, so these conversations are
ongoing.
I should say in many of our initiatives, those looking at
biomarkers and translation, it has been a constant to have
presence of FDA involved, very much important, I think both for
the academics but also for our pharma and biotech partners, who
appreciate the fact that FDA is there listening and willing to
be convinced by the evidence based to make decisions that will
facilitate the most expeditious and yet responsible for
qualifying of drugs.
Senator Braun. It sounds like the congeniality has been
there. Are you okay with the process? Do you have any comments
on reforming it, even though they are interactive and
interested, and do you think that in the case of Alzheimer's,
should they be more aggressive on trying to advance stuff to
the marketplace? Are you comfortable with the speed at which it
is going?
Dr. Hodes. I can say at present, yes.
Senator Braun. Okay.
Then I am looking at the resources, and we have gone from
$631 million in 2015 to $2.3 billion in 2019. That is
aggressive, and in this case, should it be more aggressive?
When it comes to the funding, is the research and what is
happening out there keeping pace with the availability of
funding, and do you think that is about right or needs to be
more aggressive?
Dr. Hodes. Well, I think we have been fortunate in having
the opportunity, in fact, requirement, to generate each year a
so-called bypass or professional judgment budget. That is a
budget that goes straight to you in Congress without
modification by the Department or elsewhere in the
administration.
We take that very seriously, and from the beginning of the
increase in funding and appropriations, we have each year
examined--in the context of recommendations made by scientists
at summits on a yearly basis, we find priorities, milestones
for achieving those, and each year, in a very explicit way, we
make the best professional judgment of what it would take to
achieve each milestone, and so buildup, in a real sustainable
methodology, our estimate for the needs in the following year.
Each year, last year most recently--now in July, the next
to be released--is our real professional judgment to you of
what we think is required to optimally advance the cause with
no consideration about limitations in funding and pleased to
say that those estimates have been reflected in very real and
appropriate proportion by the appropriations that follow. I
therefore think we have a good match between scientific
opportunity and appropriations and resources.
Senator Braun. That is good to hear. Thank you.
I yield the rest of my time.
The Chairman. Thank you, Senator.
Senator Jones. Thank you, Madam Chairman, and thank you for
holding this hearing. I only hope that during my time in the
Senate, I can become as strong an advocate for this issue as
you have been over the years.
Also, just for your benefit and the folks out there,
Senator Collins also every year when we have these hearings
does an incredible job of diverting the attention of the fire
marshals so that we can get as many people in here as possible.
Dr. Hodes, I would like to kind of followup a little bit on
what Senator Braun was talking about.
Seven years ago, the Country established a national plan to
address Alzheimer's disease, which set a goal of preventing and
effectively treating Alzheimer's by 2025. We are 6 years away
from that date, and recognizing the many challenges that are
associated with the developing therapies for Alzheimer's, I
would like to just get your assessment of how we are doing, how
far we are a progressing. Are we on track? Are there course
corrections that we need to make, things that we can do to make
sure that those goals are achieved?
Dr. Hodes. Well, the goal for achieving significant,
effective treatment by 2025 is a noble and important and
aspirational goal, and it drives us constantly.
We do not know precisely what the year will be by which we
will achieve those.
In terms of course correction, there is a constant
modification and redirection. As I mentioned, each year we
consult with experts. We reevaluate the progress made on goals.
We identify whether there are new gaps, new science that needs
to be sustained based on most recent discovery, so we are
constantly renewing the strategies to optimize our chance of
getting there.
Whether it is in 2025 or as soon thereafter as possible,
our goal is simple and shared with all of you to absolutely, as
soon as it is humanly possible, given the resources provided,
to make a different.
Senator Jones. You are comfortable with where we are on
track, though? Is there something else that we need to be
looking at or focused on to make sure we stay on that track?
Dr. Hodes. I think each year, we bring experts together to
assure that we are up to date with the right input and making
best judgments.
I am not satisfied--none of us are satisfied--given our
failure as yet to achieve effective interventions, but I think
we are on the right track with information to constantly update
and optimize our strategy for getting there.
Senator Jones. Great. Thank you.
This could really go to any number of folks here, I guess.
We have got several major medical research facilities across
Alabama that I think are making tremendous contributions to the
understanding and treatment of Alzheimer's, but the problem is
sometimes Alabamans live hundreds of miles away from these
facilities, and I think that there is some disparity with not
just the underserved areas, Mr. Jacobs, that you talked about,
but the rural area that populations seem to be affected even
more.
What can we do to make sure in these clinical trials that
folks in these rural areas also have the availability and the
ability to participate in some of these clinical trials?
I will open that to Mr. Jacobs or any one of the panelists.
Mr. Jacobs. Thank you, Senator. Thank you for the question.
I think as I look at this, 70 percent of Pennsylvania's
counties are considered rural, which can often pose challenges
to receiving a diagnosis, accessing services, transportation
and more, because of this, at least in our Commonwealth, what
we have tried to do is approach where people go for services
and where they ask.
A great example is actually Geisinger Health System that
received part of a Federal grant, but as part of the trial, we
are proud to work with them on the care and support side, how
do we convene stakeholders, how do we make sure that we are
contributing to project design and people living with the
disease are represented, that we are providing materials to
share after diagnosis, so that when people do connect, they
know there when to turn.
Even in that instance, many of those participants are being
directly referred to us, and so from these association in
Pennsylvania, what I would say is one of the things we are
trying to do is make sure we are connecting to communities,
whatever people consider them, the systems where they go, and
just trying to make sure whatever door folks enter that they
are receiving the best possible care and support, and we go
from there.
Senator Jones. Great. Thank you.
Yes, ma'am.
Dr. Fekrat. I think also making some clinical trial sites
at VA medical centers and their CBOCs and outlying clinics can
also help recruit a wide variety of patients and a diverse
population.
The VA offers transportation for the veteran patients and
may make it easier to improve the diversity.
Senator Jones. Great.
Well, thank you. Thank you all for being here today, your
testimony, and thank you all for coming and sharing your
experiences. Thank you.
The Chairman. Thank you, Senator.
Senator McSally. Thank you, Madam Chair.
Thank you to everybody for being here today and the
wonderful group of advocates as well in the room on this really
important issue.
I represent Arizona. It was reported last month that
Arizona has the fastest growing rate of Alzheimer's in the
country. Of the 5.8 million estimated Americans, 65 and over,
impacted, 140,00 are in my home State.
Furthermore, the death rate in Arizona is almost 20 percent
higher than the U.S. average, so this is something that is very
real for the people that I represent.
Mary and Mike, thank you for being here and for your
testimony. It was very moving, and for those who are behind you
could not see. As Mary was testifying, Mike was choking up
several times, and it was very tender to just see the
connection that you have and the support that you have with one
another.
Many aging Americans and many Arizonans that have
Alzheimer's do not have that support. They are aging alone, and
they are dealing with this disease alone. I cannot even imagine
navigating what you are navigating without someone like you,
Mary.
Mike, this may be a hard question to ask, what would you do
if you did not have someone like Mary as you are navigating
this disease?
Mr. Hartt. I would make the best of it, and that is a hard
thing to say. I take every day as it comes. It is just an
adventure.
Senator McSally. God bless you, Mike, really for being here
and for being willing to share your personal story for others.
Our local paper in Tucson shared stories like yours in a
series last year. I think it was really helpful for people to
hear the real challenges, the inspiration, just understanding
from other stories, the opportunities there are for help from
the community as people are struggling with Alzheimer's.
Mary, as a caregiver, this is really challenging. One story
we had in this series was of a woman named Joan in Tucson, a
local church pianist, a choir director for 35 years, and her
husband, Clark, who was a caregiver for 13 years alone, and he
then suffered with depression and other things.
Can you share a little more about what helps you as a
caregiver to be fully present and able to support Mike while
also caring for yourself?
Mrs. Hartt. One of the major benefits initially was that I
got in a younger-onset support group. They were other people
who had been down the road before me. Many of them were further
along with the disease than myself. I was able to look at where
we were sort of in a lucky place because we were not there yet.
I run. I look at my running as something that takes an hour
or so a day to do. Mike is fine to be alone. It is a stress
breaker for me. I am outside. I am feeling the sunshine, that
aspect of things, and then maybe I find a little joy being
Mike's camp counselor. He might groan at this.
I come up with a plan pretty much every day to say, ``Okay.
Today we are going to''--and so we try not to be in the just
sitting at home. We are always trying to find something because
for nothing else--and when we are in Bangor to go to City
Forest and have a picnic. It is not like it is expensive stuff.
It is just doing something.
Senator McSally. Great. Thank you.
I am a runner too. I totally get what you are talking
about. I appreciate it.
Clay, can you share other resources that are available to
caregivers like Mary, so that they are not alone, and they can
access support from others?
Mr. Jacobs. Absolutely. Thank you, Senator, for that
question.
I think as we look at it, early stage and younger-onset
support groups are key. Social engagement programs throughout
our chapter network nationwide are available. Even something as
simple as our 24/7 help line, so folks can know when they are
interested and able and willing to reach out that there is
someone who will be there to answer, be able to talk with them,
be able to support the next steps in that. That is a privilege.
The association and my colleagues are volunteers. We get to
provide and be able to connect with such fantastic people like
the Hartts.
Senator McSally. Great. Thank you. I appreciate it.
Thank you, Madam Chair.
The Chairman. Thank you, Senator.
Senator Rosen. Thank you so much, Madam Chair. I really
appreciate you bringing this forward.
I appreciate all of you being here. It is an incredibly
important topic. We had one of our constituents, Chuck, you saw
in the video. We thank him for being such a great advocate.
What I want to say is this really hits particularly close
to home for me because I stepped away from my career to take
care of my aging parents and in-laws, and at the end of my
mother-in-law's life, she suffered from Alzheimer's, lived in a
memory care unit, so I went through this personal journey,
myself along with some of my friends that I met along the way,
and I know the toll that it takes on families.
For me, as I think back on what I went through, I think
coordinated care is really a big part of the key. I was going
to so many different doctors, and it seemed like I did not have
that centralized care.
How do you think we should think perhaps about coordinated
care for a patient, and who do you think the best person would
be in the team of caregivers to coordinate this?
Doctor, do you have a----
Dr. Hodes. It is a great and important question. As I
alluded to, research, to try to provide evidence for the best
strategies for providing care and services is a very active
part now of the trials we carry out, and there is not going to
be a simple answer and the same answer for all populations. It
may be different for urban and rural populations, for different
ethnic and racial groups.
Senator Rosen. Even managing the amount of medications that
an older person takes that can often interact, sometimes you
are going to so many different physicians, you can have side
effects based on those things too.
Dr. Hodes. Absolutely. I think, as you are alluding to
quite rightly, it does require a team of individuals with
varied expertise, but just how to orchestrate those, organize
those and make those accessible to all who need them, is itself
a subject of active research, so we are looking at ways in
which now, for example, with a collaboratory that will put
together clinical trials designed to see what use of health
care systems can best coordinate care, and we will soon be
issuing a solicitation for applications from academics and
consortia to try to search for the beset combinations.
I mentioned there is a prize, the first price under 21st
Century Cures that has been issued by NIA, which asks for apps
that may help to navigate through the multiple steps, some of
which you have enumerated, people need to understand in order
to coordinate care.
It will be different for people living alone, those who
live in communities, and we are trying to target each of these
situations with understanding and sensitivity.
Senator Rosen. I look forward to us having that hearing
here because I think for me as I went through that journey--of
course, four different journeys with my parents and my in-laws,
each person different--understanding how you coordinate care
and collaborate for the caregiver is extremely important.
I want to move on and ask one more question about medical
data collection. It is critical to all research, particularly
Alzheimer's and so many diseases, so what I want to ask is
this. How many years has the NIH been collecting data on
Alzheimer's disease, and what picture does this aggregate data
show us about the disease and where we are headed in the
future?
Dr. Hodes. NIH, NIA have been collecting longitudinal data,
including Alzheimer's disease, for decades now.
Now, the data have emerged, have evolved from a time in
which they were simply reported of diagnosis to a point in
which cognitive testing, biomarkers have become a part of it,
and over the last 10 and 20 years, there has been more and more
of this. I think there is now a great effort going into how to
best use electronic health care records together with
administrative records like Medicare, Medicaid, to put all
those together with clinical trials data to maximize what we
learn from information about any one individual.
Senator Rosen. Let me ask you. What do you think are the
gaps in what you are collecting? So how can we help you fill
those gaps? Because I know the data tells a story. Those
predictive analytics helps your research, helps all of us, so
what gaps do you think we need to fill in getting you the right
aggregate data?
Dr. Hodes. I think we need to continue our efforts to work
very closely with those who have data of relevance. The medical
care systems and electronic health records, Medicare and
Medicaid data, experimental longitudinal studies supported by
the Federal Government, in each of these there are
considerations of privacy, of confidentiality that we have to
accommodate to, nonetheless, being able to share data across.
I think we have made progress. We now have through enclaves
in which confidentiality is assured. The access is limited to
specific questions. We can bring together data from these
several sources, analyze them, and then let the confidentiality
remain for individual studies.
We are learning with the power of computational biology
more and more. We certainly have not reached an optimal stage
yet, but continued progress, I would say, in bringing together
these various sorts of data.
Senator Rosen. Thank you. Appreciate it.
The Chairman. Thank you very much.
Senator Hawley. Thank you, Madam Chair. Thank you for
convening this very important hearing.
I want to start by saying I represent the great State of
Missouri, and there are over 20 Missouri advocates who are here
in the room with us today. Thank you so much for being here.
That makes me very proud.
One of those advocates is Lonni Schicker, and I just want
to share just a small piece of her story that I know will
resonate with all of you.
Lonni came to the Alzheimer's Association at the age of 59
when she had a test that revealed she was suffering from mild
cognitive impairment. That diagnosis placed her at higher risk
for dementia, and since then, she has been diagnosed with
Alzheimer's.
Let me just read to you what Lonni said. She said,
``Because I am younger, I am the younger face of this disease.
I had to stop working as a professor, and since Missouri does
not have resources as robust as other States, it has made it
very difficult for my family and I to access support and
services. It took me almost 3 years to get a diagnosis because
doctors were hesitant due to my age.''
This is so true what Lonni faces, what so many folks around
the country face, and I just want to say, Lonni, thank you for
being here, and thank you for being so courageous to share your
story.
This is something that is also personal to me as it is, I
suspect, to almost every family in America. My family too has
struggled with Alzheimer's. My grandparents, my uncle have
struggled with this disease.
In my State, in 2017, over 2,500 people died from
Alzheimer's. We currently have over 5,000 in hospice care who
suffer from Alzheimer's or an associated form of dementia, so
this is a serious, serious problem in my State.
I want to ask Mr. Jacobs, if I could. Your testimony, I was
particularly struck by. Coming from a rural State like
Missouri, your discussion about programming in rural areas,
Senator Jones became to touch on some of this. I just want to
come back to it.
Can you elaborate for us the challenges that you have found
in serving rural communities, outreach to those communities,
and any strategies that you have found that are successful for
expanding services into those areas?
Mr. Jacobs. Absolutely. Thank you, Senator.
As we look at it in Pennsylvania, one of the greatest
challenges is being clear on what the concerns are. Every
community is different, and so I think that highlights for me
one of the strategies that we have taken that we have proven to
be successful is not assuming we know what is best or what
services will be the best fit for that community, and so what
does it look like to be able to convene leaders in that
community, whether it is the mayor's office and business,
people impacted by the disease and others, to hear from them
about what challenges they are facing, to be able to work
together on how do we resolve that.
These type of community forums are incredibly valuable to
make sure that we are spending time on things that are
impactful, but that we are doing it with an ear to what really
matters to folks who live there, who are invested in, and that
we use that as a way to not only engage the community but
really mobilize the community to support each other and to be
able to work together, so that is one of the greatest examples
that I think can be replicated throughout the U.S., and we know
we have seen results in Pennsylvania.
Senator Hawley. Can I just ask you on that point in terms
of mobilizing folks in the community? You also mentioned
several times in your written testimony, your work with faith-
based groups and outreach to faith-based groups. What role does
working with that community play?
I am thinking of where--I come from a very small town in
Missouri. I am from rural Missouri. My town, Lexington,
Missouri, has fewer than 5,000 people, and of course,
communities across Missouri, rural communities, have faced
hospital closures, the loss of clinics, but often there is a
robust faith community in these areas.
What have you found in working with faith-based communities
and faith-based outreach? How has that worked? Has it been
helpful? What has been successful? What not?
Mr. Jacobs. Absolutely. We have mentioned communities a few
times, and I think for me and I think others, community is
whatever you associate with it. It may be geography. It may be
family, your workplace or others. It is where you turn, and for
many, that is the faith community.
For us to effectively engage people, if you are concerned
about memory or you have noticed symptoms or you have noticed
it in others, often it may be a church group. It may be your
pastor. It may be others we are turning to, so how do we
effectively engage so that that is a way to continue the
conversation? So it really is about identifying there and where
people turn. What does it look like in the AME church to know
that there is connections and to have those relationships?
One of the things we hope to do is to be able to be a
convener and a connector, and if we can start that conversation
and give that platform, how meaningful it will be for folks who
maybe turned previously and did not find that support.
Senator Hawley. Richard, did you want to add something
here?
Dr. Hodes. I do not want to fail to emphasize that with NIH
and the Federal Government, its role in trying to engage, in
acquiring evidence for the best ways to diagnose, treat, and
manage, the partnerships you have been hearing about are very
much a part of what we do.
The Alzheimer's Association here and the National Institute
on Aging have a hugely effective partnership that then involves
the faith-based groups, community associations.
I could not agree more that for us to carry out research
that engages a diverse population, we have to deal with the
institutions where those individuals live. The Alzheimer's
Association has been often a great means of connecting with
those communities. It is a partnership between Federal
Government and communities that is invaluable in this effort.
Senator Hawley. Thank you.
Thanks to all the witnesses for being here and for your
outstanding work. Thank you for sharing your personal stories,
and thank you for the advocates, for being here and for
advocating for folks who are going through this and who are
hoping for progress and a cure. Thank you for being willing to
share your stories.
Thank you, Madam Chair.
The Chairman. Thank you, Senator.
Senator Sinema. Thank you so much to our Chairman and to
our Vice Chair for today's hearing on Alzheimer's.
This is an especially critical topic for my State, Arizona,
which as you know has one of the highest rates of Alzheimer's
in the Nation.
It is also quite personal for me, as my grandmother
currently suffers from Alzheimer's, and my aunt is her full-
time caregiver. I thank all of our advocates for being here
today, and I give my special thanks and my special welcome to
those who are living with Alzheimer's and those who are caring
for family members with Alzheimer's.
Right now, over 140,000 Arizonans over the age of 65 life
with Alzheimer's, and that number is expected to increase by 43
percent in Arizona by 2025, so that is why the city of Tempe is
leading the way to help address the toll that Alzheimer's has
on patients and caregivers.
Our mayor of Tempe, Mark Mitchell, knows this firsthand.
His mother Mary Ann has been living with Alzheimer's for over a
decade. Mark's father, former mayor of Tempe and former
Congressman Harry Mitchell, has devoted himself to caregiving,
but their family saw the impact that Alzheimer's was having on
both Mary Ann, who required progressively increased levels of
care, and on Harry as her primary caregiver, so it was Mayor--
Mark decided to do more, so he partnered with the Banner
Alzheimer's Institute, and it has made Tempe into the Nation's
first Alzheimer's-and dementia-friendly city, so with the goal
of creating a safe and livable community for people living with
dementia, Tempe has trained thousands of volunteers and first
responders to recognize and respond to dementia sufferers in
the community, and the city also hosts every Monday a Memory
Caf? to provide patients and caregivers a place to socialize
and find comfort and support.
The message that Tempe is sending to Alzheimer's patients
and their loved ones is that they are not alone, but of course,
we all know and as we have heard here today, we can and must do
more.
I wanted to start with asking you a question, Dr. Hodes.
Your testimony mentioned a recent study from the National
Institute on Aging that found in the last 5 years of life,
total health care spending for people with dementia is more
than a quarter million dollars per person, so does that figure
include the cost that family caregivers bear by losing wages,
the lost impact on Social Security benefits, and the cost that
occurs to their own health?
As you probably know, in the State of Arizona, we have
nearly 340,000 caregivers who provide more than $4.8 billion of
unpaid care a year. If you could share a little bit more about
your numbers and what they include, that would be helpful.
Dr. Hodes. Yes. Thank you.
The costs by disease have been compared in a series of
reports lately and as alluded to here. Alzheimer's disease is
really the most expensive disease, in particular, in the last
years of life.
In those calculations, it has been important in the studies
that it be done--and I think has been well done--to include
both direct costs, out-of-pocket, Federal, but the indirect
costs, the loss of wages, the value of the care being provided,
so the total numbers, as huge as they are that you report, are
attempted in the studies we carry out to account for all of the
varieties of cost, direct, indirect, that you mention.
Senator Sinema. Thank you.
Research has shown that early biomarker evidence of
Alzheimer's can be detected through PET scans and even when
someone maybe shows little or no clinical symptoms, so given
that we now know that early diagnosis helps patients benefit
from treatment, clinical trials, and allows families to create
a care plan, my question for other members of the panel is,
what types of questions should family know to ask their doctor
early on if they are concerned that their loved one may be
subject or have a predisposition toward Alzheimer's?
It looks like it is you, Mr. Jacobs.
Mr. Jacobs. Thank you.
I think really what I could best touch on is, anecdotally,
as we hear from families. It is the willingness to have that
conversation with each other, the willingness to be able to
engage physicians and others, because we know that often the
disease, diagnosis is not disclosed.
We know through the Alzheimer's Association's recent Facts
and Figures Report that while 82 percent of seniors think
cognitive assessment is important, only 16 percent report
regularly receiving them.
This conversation needs to shift, our comfort with it, and
what I think had traditionally been a disease that we talk
about quietly, today, as a great example with this hearing,
with all of the folks who are behind me in this room and across
the Capitol, it is that the urgency, the need, the passion, and
the volume is raised, so we need to take that back to our
communities and continue the conversation and be willing to
talk with each other when we notice symptoms, be able to walk
with our providers, and I think that is just a key point to
start as we look at moving forward.
Senator Sinema. Thank you so much.
Chairman, I just want to take a moment to thank all of he
advocates who are here, not just here in this room with us
today, but all over the Capitol sharing their stories of
personal experience with Alzheimer's, and I want to thank you
for taking the time out of your life to do that and to share
these highly personal stories and let you know they do make an
impact.
Thank you.
The Chairman. Thank you, Senator.
Dr. Fekrat, your research points to a whole new direction
in our understanding of Alzheimer's disease, and I find it very
exciting that you are exploring the link between vision and
cognitive health.
Could you tell us how you decided to study that potential
ink?
Dr. Fekrat. Well, our group specifically became interested
in joining the other researchers around the world that are
studying this link. After we were examining a set of identical
twins in our clinic in the middle of a busy day, one set of 96-
year-old identical twins with the same DNA and genetic risk,
however, one had advanced Alzheimer's disease and the other one
was cognitively healthy, living independently, using a
smartphone, talking about current events.
We took this opportunity to take this new technology that I
had mentioned, OCTA, and obtain images in both of the twins,
and we saw a striking decreased retinal vessel density in the
twin with advanced Alzheimer's, so this showed us that
independent of aging that Alzheimer's had the decreased retinal
vessel density, and that sort of spurred the rest of our work.
The Chairman. That is absolutely fascinating.
Dr. Hodes, one of the reasons that I am so excited by the
charts that you have placed and explained is that we have
concentrated the research on amyloid plaque, on tau, and yet,
as you pointed out when you talked about blood pressure, it may
be that cardiovascular factors are at play, which seems to be
what our ophthalmologist has just discussed as well.
Has the expansion in funding allowed you to fund
applications for grant money that are exploring whole new,
different, out-of-the-box areas that we have not previously
looked at?
Dr. Hodes. The answer is absolutely yes in a most exciting
way.
Just a couple of examples, in the studies of the genetics
and gene expression patterns that I mentioned, over hundreds
and thousands of brains looking for generic targets that were
previously unanticipated, one, I would say, intriguing
provocative report published last year found changes that were
associated with viral infections of a type. This is another
dimension to what has been raised over the years, the
possibility that there might be infectious and inflammatory
components.
Another example, as we look at the impact of what we would
call normal aging, changes that occur with aging and how they
interact with Alzheimer's, why does Alzheimer's disease occur
in later years of life generally, among the changes that occur
with aging at a molecular, cellular level, we are just
discovering, is something called ``cellular senescence.'' In
each of us, in all our organs and tissues, as we age, a number
of cells become senescent. They do not divide the way they
normally do. They have a different phenotype or type . They
secrete inflammatory molecules, and what has been found in some
very interesting studies, even in animal models, you find very
clever genetic or pharmacological ways to get rid of those
senescent cells called ``senolytics.'' You are lysing the
senescent cells. It actually has a positive impact in the brain
of a mouse model of Alzheimer's disease in terms of decreasing
damage, in fact, even allowing reversing of damage, examples of
very disparate ways in which research is carried out by people
in a totally different field are now being drawn into the area
of Alzheimer's research.
As one strategy for doing it, we recently in this past year
looked at all of the institutes across NIH and asked whether
their investigators who were not studying Alzheimer's research
had proposals to extend their expertise into Alzheimer's
research, and we funded last year some 300 such new scientists
to be brought into the field with imaginative ideas that you
have heard about today and some of those I have tried to
illustrate.
This has been one of the most exciting and productive
aspects of scientific opportunity converging with the resources
that you have been able to provide.
The Chairman. I like that multidisciplinary approach. I
think that is really important too.
I was fascinated, what you just described about cells
because it reminded me of a discussion that I had with a
scientist at Harvard.
I have visited NIH, Jackson Labs, Mayo Clinic, University
of Pennsylvania, and a lot of different places where research
is going on, and this researcher told me about what he called a
``REST.'' Is that what you are talking about here? I cannot
remember whether it is a REST protein. I think it was a protein
that could wake up the cell and cause it to regenerate.
It sounds very similar to what you just described.
Dr. Hodes. It is a unique and additional example of a
protein that normally changes with aging and its expression in
the brain and where that normal progression and regulation is
altered with Alzheimer's disease.
The Chairman. That is fascinating.
I actually could spend all day at those labs. I want to
tell everyone here. You would be so encouraged when you see the
dedication of these researchers and other health care providers
who are exploring all different approaches. I know it is easy
to get discouraged about the failed clinical trials, but, boy,
when you talk to people in the labs, your optimism goes way up.
It is just so exciting what is going on.
Dr. Hodes. If I may take the liberty----
The Chairman. Please.
Dr. Hodes [continuing]. of inviting you, Mr. Casey, and
members, we have had most exciting opportunities at NIH on
campus to have delegations, individual or multiple, come to
visit. We would love to let you see more about what goes on in
the way of researching, including in Alzheimer's disease, so
please take that as an open invitation at any point. We would
love to explore with you on campus.
The Chairman. Thank you. I will come back any day. Thank
you.
Mr. Jacobs, let me end my questioning by asking you a
little bit more about care planning. Care planning is now
recognized as such a critical aspect of dealing with the
Alzheimer's, particularly since this disease spans so many
years, and yet there is no one roadmap. There is no one answer
to care planning. Each plan needs to be flexible, tailored to
the individual. What may work well for the Hartts might not
work for my family.
Could you tell us more about the process of developing a
care plan that is tailored to the individual needs of a family?
Mr. Jacobs. Yes. Thank you, Senator.
As we look at care consultation services, as an example,
through the Alzheimer's Association, we know that people reach
out to us at different aspects of the disease, to your point,
at different points on either pre-diagnosis or after being
diagnosed, really with changes that come along, knowing that
disease spans years.
The hope is to be able to provide brief counseling, be able
to identify immediate needs there, and then be able to help
them move on with immediate concerns.
Often what we see throughout Pennsylvania is folks reach us
after when we would love to see care planning already having
occurred. We are dealing with acute situations and trying to
help them through the next steps, and so that is why we are
encouraging, incredibly excited as we look at the additional
legislation being proposed, because if we can reach people
earlier, talk about legal and financial issues, talk about
medical management, develop a care team or a care team of
choice, all of those things may change how people connect with
us, may change how they experience this disease, and provide a
little bit more hope and provide the opportunity for folks to
live well with the disease, as we have heard from others today,
early on and really be active and engaged in what that looks
like in the coming years.
The Chairman. Thank you.
I know I said that would be my last question, but I hope
the Ranking Member will forgive me if I ask one more, and that
is of Mary Hartt.
Just following up on that, you talked about how the support
group of the younger-onset Alzheimer's helped you, but what
about medical and other health care providers or other sources?
Did you find help in putting together a plan, or did you just
develop it on your own?
Mrs. Hartt. We went to Mass General because at Dysart's, we
had a wellness group that was able to get us the appointment,
and when we were at Mass General, they had care plan. We met
with a social worker. We have met with--Mike has met with a
speech therapist. We have had, as I said in my speech, the
doctor suggested that I get power of attorney, so it has not
just been medical that we have been given at Mass General. It
has been life needs, and the doctor very much has encouraged
the living life today.
I do not know that I would have had the strength to be able
to be as creative as I have had I not had his advice to be
doing this.
The Chairman. Thank you. That is very helpful.
Senator Casey. Thank you, Madam Chair.
I wanted to go back to the funding question for Dr. Hodes.
I know that you and your colleagues at the National Institute
on Aging are making incredible progress and scientific
discoveries every day. We know that those discoveries are not
only focused on helping find a cure, but also on improving
care.
The legislation we are working on together, Chairman
Collins and I and others, will help to continue that progress.
I wanted to ask you. I guess my question--and I know it is
a bit redundant, but I do not think we can emphasize it enough,
the importance of the funding. I know maybe for even folks here
in Washington that are used to these discussions, but
especially for folks who do not live and work in the halls of
Congress or do not work on these issues every day, they may
think it is yet another appropriations request just like
everything else, just adding funding for the purposes we
outlined.
I do think, though, that it is important that we emphasize
the impact of the dollars and that this is not just another
funding request, that it is really an investment, an investment
in a cure, an investment in better care.
I just want to have you walk through again. When we look at
the chart that you showed us, $631 million in Fiscal Year 2015
all the way up now to potentially $1.9 billion----
Dr. Hodes. Plus this year, an addition of $425 million.
Senator Casey. Right.
Dr. Hodes. Approximately $2.3 billion.
Senator Casey. Tell us what that means because I think we
sometimes talk about the numbers, and the numbers are
important, but what does that mean to the measure of progress
we got to make?
Dr. Hodes. Again, if I could just briefly outline what I
alluded to, the way in which we generate or bypass budgets is
tied very much to our planning, so that as a result of summits
held each year, either in Alzheimer's disease, Alzheimer's-
related dementia, or care and services, we generate from
hundreds of national and international leaders and advocates
and community members, a list of the priorities for research
and gaps.
We translate those into milestones, to achieve any of those
priorities, what do we need to accomplish year by year, and
then we estimate the cost of carrying out that research.
In addition, each year we go back to account for what was
accomplished. In the beginning, the first metrics are we funded
new grants, new investigators, and this is important and
exciting by itself. I think some figures we mentioned
repeatedly, of all the awards given, about a quarter were to
new and early stage investigators who had no previous NIH
support at all. These are the exciting newest generation of
research that has come into the field. Part of what we have
accomplished with this funding is to give them an opportunity
to commit their ingenuity, creativity.
Approximately a third of all of the awards we have given
were to investigators who had never been in the field before.
Some of them are new, but some are established investigators
moving into the field, so these themselves are metrics.
Now, year by year, we will ask about what the success has
been after funding our new grants, how many new targets have
there been identified as potential translational vehicles
toward clinical trials. The next step will be to track the
number of clinical trials we have instituted, and so each of
these, year by year, we factor to monitor whether we are doing
the appropriate and optimal job of utilizing the resources that
come and estimating for the subsequent years what we think
additional resources might be.
Senator Casey. Well, you are doing something that
Washington does not do very well, which is planning. We have
not been accused of that much lately, but we are grateful for
that insight.
I do not have any more questions. I do want to mention that
I guess while I was upstairs at another hearing, Clay Jacobs
got the question about rural, access to folks in rural areas,
and we are grateful to others on the panel who are addressing
that question.
Madam Chair, thank you very much, and again, thanks for
this hearing.
The Chairman. Thank you, Senator Casey.
I want to thank all of our witnesses for being here today
and particularly my constituents, the Hartts, who came from
Hamden, Maine, to be with us, but each and every one of you has
added so much to our understanding.
I also want to thank our staff, which worked very hard, to
put this hearing together.
Most of all, I want to thank all of the advocates who have
come to participate, including those of you who are living with
Alzheimer's, those of you who are family members, caregivers,
and those of you who are researchers, organizers, and
advocates.
In the puzzle to end Alzheimer's, each of you is a critical
piece, and with your efforts, we are making progress.
This is very personal as well as a professional cause to
me. As I told the advocates from Maine, I lost my father a year
ago to Alzheimer's after my mother had cared for him as his
principal caregiver for approximately 8 years before he went
into the Veterans Home in our hometown of Caribou for the last
few months of his life.
I know firsthand how difficult it is and also the stress
placed on a caregiver, particularly one who is turning 92 next
month, so paying attention to our caregivers as well as the
research is equally important.
I also lost my grandfather and two of my three uncles to
this devastating disease, so Dr. Fekrat, I may be down to see
you for that scan.
I do so appreciate that sea of advocates that we see.
Working together, I know that we can turn the tide on
Alzheimer's, but without you, we never could have gotten to the
funding levels that are making possible such exciting research
that is going on today, so I am grateful for your work.
Senator Casey, do you have any final words for us?
Senator Casey. Just briefly, Madam Chair. Thank you, and I
want to thank all those who are in attendance today--the
advocates, the researchers, and of course, our witnesses who
have given us, certainly for me and I know other members of
this Committee, an expanded knowledge base. We learn every year
we are here about Alzheimer's disease and related dementias and
also the effort that has been undertaken here led by individual
Senators, like Senator Collins, to make this not only a
critical priority, but also a bipartisan endeavor. Those happen
around here once in a while, and we are grateful for her
leadership to improve both awareness and to increase resources.
Clay, I want to thank you for representing Lackawanna
County well. I will tell everyone back home.
I did want to close with something that Mr. Hartt said in
your comments earlier. You said--and I think I am quoting you
accurately here--``I have always found my own way'' and how
that challenge that you have been presented with challenges the
way you have lived your life, but I think your presence here
and the testimony and brave witness of others will help all of
us find a way to a cure and better care, so we appreciate those
who are standing up, like you and others, Mr. Hartt, for this
effort. Thanks very much.
The Chairman. Thank you.
Committee members will have until Friday, April 12th, to
submit any additional questions for the record, which we will
send your way.
Again, my thanks to every single person in this room. You
truly are making a difference.
This concludes this hearing.
[Whereupon, at 11:26 a.m., the Committee was adjourned.]
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APPENDIX
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Prepared Witness Statements
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Statements for the Record
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Slide presented by Dr. Fekrat, M.D., Professor of Ophthalmology and
Associate Professor of Surgery
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Slides presented by Dr. Hodes, M.D.,Director of National Institute on
Aging and National Institutes of Health
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[all]