[Senate Hearing 114-847]
[From the U.S. Government Publishing Office]


                                                      S. Hrg. 114-847

                       FINDING A CURE: ASSESSING
                      PROGRESS TOWARD THE GOAL OF
                       ENDING ALZHEIMER'S BY 2025

=======================================================================

                                HEARING

                               BEFORE THE

                       SPECIAL COMMITTEE ON AGING

                          UNITED STATES SENATE

                    ONE HUNDRED FOURTEENTH CONGRESS


                             SECOND SESSION

                               __________

                             WASHINGTON, DC

                               __________

                             APRIL 6, 2016

                               __________

                           Serial No. 114-23

         Printed for the use of the Special Committee on Aging

[GRAPHIC NOT AVAILABLE IN TIFF FORMAT]

        Available via the World Wide Web: http://www.govinfo.gov
        
                               __________

                    U.S. GOVERNMENT PUBLISHING OFFICE                    
48-177 PDF                 WASHINGTON : 2022                     
          
-----------------------------------------------------------------------------------        
        
                       SPECIAL COMMITTEE ON AGING

                   SUSAN M. COLLINS, Maine, Chairman

ORRIN G. HATCH, Utah                 CLAIRE McCASKILL, Missouri
MARK KIRK, Illinois                  BILL NELSON, Florida
JEFF FLAKE, Arizona                  ROBERT P. CASEY, JR., Pennsylvania
TIM SCOTT, South Carolina            SHELDON WHITEHOUSE, Rhode Island
BOB CORKER, Tennessee                KIRSTEN E. GILLIBRAND, New York
DEAN HELLER, Nevada                  RICHARD BLUMENTHAL, Connecticut
TOM COTTON, Arkansas                 JOE DONNELLY, Indiana
DAVID PERDUE, Georgia                ELIZABETH WARREN, Massachusetts
THOM TILLIS, North Carolina          TIM KAINE, Virginia
BEN SASSE, Nebraska
                              ----------                              
               Priscilla Hanley, Majority Staff Director
                 Derron Parks, Minority Staff Director
                         
                         C  O  N  T  E  N  T  S

                              ----------                              

                                                                   Page

Opening Statement of Senator Susan M. Collins, Chairman..........     1
Opening Statement of Senator Claire McCaskill, Ranking Member....     3

                           PANEL OF WITNESSES

Ronald Petersen, M.D., Ph.D., Director, Mayo Clinic Alzheimer's 
  Disease Research Center, The Mayo Clinic Study of Aging, and 
  Chair, Advisory Council on Alzheimer's Research, Care, and 
  Services, Rochester, Minnesota.................................     5
David Hyde Pierce, Actor and Alzheimer's Advocate and Former 
  Member, Advisory Council on Alzheimer's Research, Care, and 
  Services, and Honorary Member, Alzheimer's Association National 
  Board of Directors, Los Angeles, California....................     8
Polly Bradley, Director of Adult Day Services, Southern Maine 
  Agency on Aging, Scarborough, Maine............................    10
Lisa P. Baron, J.D., Executive Director, Memory Care Home 
  Solutions, St. Louis, Missouri.................................    13

                                APPENDIX
                      Prepared Witness Statements

Ronald Petersen, M.D., Ph.D., Director, Mayo Clinic Alzheimer's 
  Disease Research Center, The Mayo Clinic Study of Aging, and 
  Chair, Advisory Council on Alzheimer's Research, Care, and 
  Services, Rochester, Minnesota.................................    35
David Hyde Pierce, Actor and Alzheimer's Advocate and Former 
  Member, Advisory Council on Alzheimer's Research, Care, and 
  Services, and Honorary Member, Alzheimer's Association National 
  Board of Directors, Los Angeles, California....................    44
Polly Bradley, Director of Adult Day Services, Southern Maine 
  Agency on Aging, Scarborough, Maine............................    46
Lisa P. Baron, J.D., Executive Director, Memory Care Home 
  Solutions, St. Louis, Missouri.................................    48

 
                       FINDING A CURE: ASSESSING
                      PROGRESS TOWARD THE GOAL OF
                       ENDING ALZHEIMER'S BY 2025

                              ----------                              


                        WEDNESDAY, APRIL 6, 2016

                                       U.S. Senate,
                                Special Committee on Aging,
                                                    Washington, DC.
    The Committee met, pursuant to notice, at 2:27 p.m., Room 
106, Dirksen Senate Office Building, Hon. Susan M. Collins, 
Chairman of the Committee, presiding.
    Present: Senators Collins, Heller, Tillis, McCaskill, 
Casey, Whitehouse, Blumenthal, Donnelly, Warren, and Kaine.

                 OPENING STATEMENT OF SENATOR 
                   SUSAN M. COLLINS, CHAIRMAN

    The Chairman. The hearing will come to order.
    Good afternoon. I am convening this hearing today to assess 
our progress in combating Alzheimer's disease since the 
enactment of the National Alzheimer's Project Act which I co-
authored with my friend and former colleague, Senator Evan 
Bayh.
    As the many family members and advocates here today can 
attest, Alzheimer's is a devastating disease that exacts a 
tremendous personal and economic toll on individuals, families, 
and our health care system. The Centers for Disease Control 
lists Alzheimer's as the sixth leading cause of death in our 
country. Other estimates put it at number three on the list of 
deadliest disease behind only cancer and heart disease.
    Approximately 5.4 million Americans are living with 
Alzheimer's today, including 37,000 in the State of Maine. That 
number is soaring as our overall population grows older and 
lives longer. If current trends continue, Alzheimer's disease 
could affect as 16 million Americans by the year 2050.
    In addition to the human suffering it causes, Alzheimer's 
is our Nation's costliest disease. The United States spends 
more than $236 billion per year, including $160 billion in 
costs to the Medicare and Medicaid programs caring for people 
with Alzheimer's. It is the only one of our Nation's top 10 
diseases without an effective means of prevention, treatment, 
or a cure. If we do nothing, the Alzheimer's Association 
forecasts that the disease will cost the United States an 
astonishing $1.1 trillion by 2050.
    Despite these alarming statistics, for too long, our 
efforts to fight this devastating disease lacked coordination 
and focus. It was not until the National Alzheimer's Project 
Act, known as NAPA, became law in 2011 that a strategic 
National Plan to combat Alzheimer's was created, and it has 
since been updated annually.
    NAPA focuses our efforts to accelerate progress toward 
better treatments and means of prevention and, ultimately, a 
cure. We have taken many encouraging steps in the past 5 years 
since NAPA became law as our panelists will discuss today.
    This hearing presents the opportunity for a progress check. 
Were are we in our fight against Alzheimer's, and what more 
must we do in order to achieve our goals by the year 2025?
    The experts have calculated that $2 billion a year in 
research funding is needed to achieve our goal of preventing 
and treating Alzheimer's by the year 2025. Last year, we were 
able to celebrate tremendous progress. Many of us advocated 
strongly for a $350 million increase for Alzheimer's research, 
and it became law, and it would not have become law without the 
determined advocacy of all the people in this room and back 
home who backed our efforts. I thank you for that. This is the 
largest increase in history, and it brings our total nearly 
halfway to the $2 billion goal.
    Compared to its human and economic toll, however, funding 
for Alzheimer's and other dementias still remains 
disproportionately low. Other serious diseases receive annual 
funding of $2 billion, $3 billion, and even more than $5 
billion, and those investments have paid dividends in the form 
of new treatments and declining death rates.
    There is also promising research that holds hope for 
Alzheimer's patients and their families. The research community 
is making strides through clinical trials with new therapeutic 
targets. We simply must provide adequate funding to advance 
this research.
    While the nearly 60 percent increase in funding for 
Alzheimer's research is welcome and significant, this is no 
time to take our foot off of the accelerator. The increasing 
number of Alzheimer's cases has dire implications for our 
Federal budget. The average Medicare payment for an individual 
with Alzheimer's is three times higher than for those without 
the condition. For Medicaid, the average payments are 19 times 
higher. Failure to achieve progress in the fight against this 
disease will bankrupt our Federal and State health care 
programs.
    As we tackle Alzheimer's complexities, we must never forget 
the family caregivers who are truly heroes. Our caregivers make 
many personal and financial sacrifices to ensure that their 
loved ones have the care that they need.
    When I was in Maine recently, I saw an 88-year-old woman 
taking care of her 90-year-old husband with Alzheimer's. I 
talked to a woman in her 50's who, with her sisters, is 
juggling the care of their mother with their work schedules, 
and I spoke with an elderly husband trying to cope with his own 
health problems as well as his wife's dementia.
    Chances are, sooner or later, most of us will either be 
family caregivers or be someone who needs one. America's 
caregivers enable many living with Alzheimer's to remain in 
their own homes.
    NAPA places an important focus on Alzheimer's disease care 
and services and caregivers serve on the Advisory Council. To 
supplement these worthy efforts, I have introduced bipartisan 
legislation modeled after NAPA that would require the 
Department of Health and Human Services to develop a national 
strategy to recognize and support our more than 40 million 
family caregivers. It is called the RAISE Family Caregivers 
Act, which I introduced with Senator Baldwin.
    I am pleased to report that it passed the Senate 
unanimously and it now awaits action in the House, so to add to 
the to-do list of all the advocates in the audience today, and 
we welcome all of you, I would urge you to ask your 
Representatives in the House to pass the RAISE Act without 
further delay.
    By supporting family caregivers, we can assist more people 
with Alzheimer's and living at home where they want to be; we 
can help to delay or prevent more costly institutional care and 
unnecessary hospitalizations, but caregivers need our help 
through much more respite care and home health services.
    Again, I want to thank the wonderful panel of witnesses 
that we have with us today and all of the advocates who have 
come from around the country to make the case for more research 
funding and for further progress in helping our caregivers.
    Finally, let me note that I understand from the Alzheimer's 
Association and affiliated groups that there are more than a 
thousand people in Washington today lobbying on behalf of those 
with Alzheimer's.
    Senator McCaskill.

                 OPENING STATEMENT OF SENATOR 
                CLAIRE McCASKILL, RANKING MEMBER

    Senator McCaskill. There is purple everywhere, right?
    I want to thank Chairman Collins for her leadership on this 
Committee and specifically her leadership on behalf of 
individuals and families that are suffering with Alzheimer's.
    I would also like to thank the many advocates who are here 
today, and I know it will not surprise anyone that I want to 
give a special shout-out to all of my friends and advocates 
from the State of Missouri, who have traveled here today to 
lend their voices to this effort.
    I hear you.
    As the people in this room know, I am going to make an 
effort here not to repeat everything that Chairman Collins said 
because she covered the issues so well, but some of the 
statistics bear repeating because they are startling, and I 
think it is important that we repeat some of them because too 
many Americans do not really understand the task ahead of us as 
it relates to this disease.
    Alzheimer's is a disease that wreaks havoc not just on the 
patient's life but on the lives of that person's family as 
well. With my generation, the Baby Boom generation, aging, the 
number of Americans with Alzheimer's is going to increase 
dramatically unless we find a way to prevent or effectively 
treat the disease.
    If nothing is done to change the trajectory of this 
disease, costs are projected to increase over a trillion by 
2050. We have no hope of balancing our budget and getting our 
long-term debt under control if we do not address this disease 
and the severe costs it will impose on Federal dollars.
    Medicare and Medicaid are paying the vast majority of the 
money to care for this disease. It is estimated that one out of 
every three Medicaid dollars is spent on long-term care, much 
of that for people with Alzheimer's. I know in the State of 
Missouri that number is even higher, and it is not just cost to 
the government--that is numbers on a page--but rather, the cost 
that individual families are bearing. A study, a new study, 
done by the Alzheimer's Association found that, on average, 
families are spending $5,000 out of pocket per year to care for 
their loved one with Alzheimer's, and many families are 
spending multiples of that.
    These numbers are not sustainable for our government, and 
they are certainly not sustainable for the families.
    Families are carrying so much of the burden of Alzheimer's 
disease, and much of that burden is not financial. Much of that 
burden is, in fact, emotional, psychological.
    I would like to recognize now for a moment if everyone 
would raise their hand if they are currently or have been a 
family caregiver from someone suffering from Alzheimer's.
    [Show of hands.]
    I am not surprised. The impact of this disease is so 
significant that it turns anyone who it touches into an 
advocate to make sure we do something about it. There are more 
than 15 million caregivers for people with Alzheimer's disease, 
and last year they provided over 18 billion hours of care for 
their loved ones.
    I would like to introduce one of our witnesses on today's 
panel, whose organization is providing critical support for 
caregivers in my home State of Missouri. Lisa Baron is the 
Founder and Executive Director Memory Care Home Solutions based 
in St. Louis.
    Memory Care Home Solutions works to extend and improve time 
at home for people with dementia by providing in-home training 
and support for family caregivers. Her organization primarily 
serves families with the most need, and they offer their 
services free of charge. The model of Lisa's organization not 
only helps seniors to remain in their homes but also provides 
critical assistance to family caregivers who are so often 
overlooked.
    I look forward to hearing Lisa's testimony and learning 
more about the interesting work her organization is doing in 
the St. Louis area.
    We must continue to provide resources and support to help 
those with Alzheimer's disease and those who care for them, but 
if we do not also invest more in medical research this disease 
will bankrupt not only our governments but our families.
    I was very pleased to see that last year's budget increased 
funds for NIH to research Alzheimer's disease. Still, the 
funding is too low and receives much less than other diseases 
with similar outcomes. I cannot think of another disease that 
is more deserving of the increased research dollars. The 
Chairman of the Advisory Council on Alzheimer's Research, Care, 
and Services has testified to Congress that we must devote at 
least 2 billion a year to Alzheimer's research in order to meet 
the goal of preventing and effectively treating the disease by 
2025.
    There is a lot of talk about government these days. There 
are too many that want to make government the enemy. Government 
investment in medical research has long made America a beacon 
to the world for medical advancement. Now is no time to turn 
from that important role our country has served as a leader in 
finding the cures to so many diseases. I would like to place 
Alzheimer's on that list. I hope we continue to increase our 
investment in NIH research for Alzheimer's disease.
    I look forward to the testimony of our distinguished panel. 
Like the Chairman, I am incredibly grateful for all of you 
giving your time and your energy to help with this incredible 
problem that our country faces, and together, we are going to 
try to do all we can to make a difference.
    Thank you, Madam Chairman.
    The Chairman. Thank you. Thank you very much.
    We will now turn to our panel, and first we will hear from 
Dr. Ronald Petersen, the Director of the Mayo Clinic 
Alzheimer's Disease Research Center and the Mayo Clinic Study 
of Aging. In 2011, Dr. Petersen was appointed as Chair of the 
Advisory Council on Alzheimer's Research, Care, and Services 
created by the National Alzheimer's Project Act, and it is a 
great pleasure to welcome you back, Doctor.
    Next, I would like to welcome David Hyde Pierce, an award-
winning actor who is well known to all of us for his role in 
the beloved television series ``Fraser.'' Mr. Pierce is a long-
time and passionate advocate for Alzheimer's research and a 
former member of the Advisory Council.
    We will then hear from one of my constituents, Polly 
Bradley, who is the Director of Adult Day Services at the 
Southern Maine Area Agency on Aging. Ms. Bradley will share her 
firsthand experience of the challenges that caregivers face and 
the importance of respite care, and Senator McCaskill has 
already introduced Lisa Baron, the Executive Director of Memory 
Care Home Solutions.
    Did you have anything you wanted to add?
    Senator McCaskill. No.
    The Chairman. Okay. Thank you.
    We will start with you, Dr. Petersen.

           STATEMENT OF RONALD PETERSEN, M.D., PH.D.,

           DIRECTOR, MAYO CLINIC ALZHEIMER'S DISEASE

           RESEARCH CENTER, THE MAYO CLINIC STUDY OF

             AGING, AND CHAIR, ADVISORY COUNCIL ON

           ALZHEIMER'S RESEARCH, CARE, AND SERVICES,

                      ROCHESTER, MINNESOTA

    Dr. Petersen. Thank you very much. Good afternoon, Chairman 
Collins, Ranking Member McCaskill, distinguished members of the 
Senate Special Committee on Aging.
    I am Ron Petersen. As the Senator has indicated, I direct 
the Alzheimer's Disease Research Center at the Mayo Clinic and 
Chair the Advisory Council on Research, Care, and Services for 
the National Alzheimer's Plan, but today I am speaking as a 
clinician and a researcher and not a special government 
employee, I have been told, so I thought I would add that.
    As you know, as has been recounted, the National 
Alzheimer's Project Act was signed into law by the President in 
2011, charging the Secretary for Health and Human Services with 
the task of addressing the first plan for Alzheimer's disease 
in this country. That was done, it was published in 2012, and 
as the law required, it has been updated annually since that 
time.
    By Alzheimer's disease, we include also other disorders 
such as frontotemporal dementia, Lewy body disorders, vascular 
cognitive impairment, and dementia, so it is a broader scope 
than just Alzheimer's disease.
    Senator Collins asked the questions: Have we made any 
progress since 2012? Has it made a difference?
    I think the short answer is a definite yes, but there is a 
caveat; we have more work to do, no doubt.
    In this difficult funding climate in Washington, over the 
last several years, Alzheimer's disease has received increasing 
attention as a disorder of interest. At the National Institutes 
of Health, Dr. Francis Collins has put this on his priority 
list such that at the beginning of the National Plan the annual 
funding for Alzheimer's disease was about $484 million a year. 
In 2012, Dr. Collins repurposed $50 million toward Alzheimer's 
disease.
    2013, the year of sequestration, everything went south 
when, in fact, Dr. Collins and Dr. Richard Hodes of the 
National Institute of Aging found funds in their discretionary 
accounts to sort of buoy up the Alzheimer's funds to keep them 
afloat.
    In 2014 and 2015, Congress allotted funds specifically for 
Alzheimer's disease, for which we are gratefully impressed by 
the gesture by Congress at that point in time.
    Most notably, in December 2015, you passed the fiscal year 
1916 budget which increased the Alzheimer's disease-related 
disorders funding by $350 million, bringing the overall funding 
to around $991 million, approaching the $1 billion mark. There 
is a tremendous of confidence, I think, in the research 
community and people who deal with Alzheimer's disease, and we 
are greatly appreciative of that effort.
    In addition, in 2014, Congress passed the Alzheimer's 
Accountability Act. This charged the National Institutes of 
Health with the task of generating a budget annually to say: 
What will it take for the researchers in the field to 
accomplish the goal of the National Plan by 2025?
    With that effort, Dr. Collins, Dr. Hodes, and Dr. Walter 
Koroshetz, of the NINDS got together and have put together 
budgets now, so for the Fiscal Year 202017 budget, they 
estimated it would take $323 million. They presented that to 
the Advisory Council last summer. Currently, they are working 
on the Fiscal Year 202018 budget.
    We strongly encourage Congress to endorse these 
thoughtfully generated funding estimates since these are done 
by the experts at NIH, saying this is what it is going to take 
to get to that point in the disease process.
    However, to be honest, our job is nowhere near done. The 
2025 goal of the plan is fewer than 10 years away. While the $1 
billion we have now, almost 1 billion, is wonderful, the 
Council really has estimated it is going to take $2 billion, 
and that puts it on par, relatively speaking, with other major 
diseases in the country--cancer, heart disease, HIV/AIDS, so 
has the investment in those entities been fruitful? Absolutely. 
Those entities have shown remarkable progress, reducing the 
annual death rate of those diseases.
    Alzheimer's disease, in contrast, is just the opposite. The 
annual death rate for Alzheimer's disease continues to climb. 
Alzheimer's disease is the only disorder in that category 
without an effective cure, treatment, or something that is 
going to make a difference down the line, so we have a lot of 
work to do.
    As Senator Collins mentioned, this may be the single 
disease that bankrupts the health care system. We spend more 
money caring for this disease than anything else. At previous 
hearings before this Committee, it has been documented that, in 
fact, this is the costliest disease to the country, outweighing 
cancer, outweighing heart disease. Alzheimer's disease is where 
it is at, so the bottom line is these investments pay off, so 
what we are doing now not only for individuals, for families, 
and for the health care economy, but the results are there.
    At a research summit last week at the National Institutes 
of Health, Alzheimer's disease and related conditions were 
characterized as multifactorial. Ultimately, we will probably 
need what is known as combination therapy. There is not going 
to be a single pill, a single antibody that is going to cure 
the disease. It is going to take inroads from several different 
factors.
    Right now there is extensive work going on in the research 
community refining biomarkers, so the biomarkers are aimed at 
these individual pathologic components such that when we 
identify a biomarker that is contributing to the disease we can 
then create a therapy for that particular biomarker and that 
particular pathologic entity.
    Has this worked elsewhere? Absolutely. That is the rule in 
HIV/AIDS, in cancer, in hypertension.
    In high blood pressure, you get one number when you read 
that from the blood pressure cuff, but it could be caused by 
arterial stiffening, kidney disease, heart disease, fluid 
disorders, all kinds of problems, so we have a multifactorial, 
combinatorial approach to treating that disease. Single number. 
High blood pressure.
    We think that is where Alzheimer's disease is headed as 
well, so while this is an exciting time to be involved in 
Alzheimer's disease research, especially with the increased 
funding that you have provided, our patients and families 
cannot wait. It is incumbent upon all of us, from the 
scientific, clinical, advocacy, and legislative perspectives, 
to not disappoint our constituents. These are the people who 
are counting on us to make a real difference.
    The disease is not slowing. It is not going away. It is 
actually increasing because of the aging of America, so we have 
our work ahead of us, but we have made progress.
    I would like to commend both the Federal and the non-
Federal members on the Advisory Council for all of their work 
and also the Federal officials with the Department of Health 
and Human Services, particularly the Office of Assistant 
Secretary For Planning and Evaluation, since they have been the 
individuals who have really shepherded this through the entire 
process.
    In addition, the advocacy groups, most notably the 
Alzheimer's Association, have been absolutely fundamental in 
this effort along the way.
    However, I must implore Congress to continue to focus on 
additional funding for Alzheimer's disease and related 
conditions going forward. The need cannot be any greater than 
it is today.
    Thank you very much.
    The Chairman. Thank you very much, Dr. Petersen. Thank you 
for your testimony.
    Mr. Pierce.

             STATEMENT OF DAVID HYDE PIERCE, ACTOR

              AND ALZHEIMER'S ADVOCATE AND FORMER

            MEMBER, ADVISORY COUNCIL ON ALZHEIMER'S

           RESEARCH, CARE, AND SERVICES, AND HONORARY

            MEMBER, ALZHEIMER'S ASSOCIATION NATIONAL

          BOARD OF DIRECTORS, LOS ANGELES, CALIFORNIA

    Mr. Pierce. Madam Chair, Ranking Member McCaskill, members 
of the Committee, thank you for this opportunity to testify 
before the Senate Special Committee on Aging. I am very honored 
to be here, poised between the advocates behind me and the 
advocates in front of me, and I want to thank the Committee for 
its continuing to focus on Alzheimer's, which is an escalating 
national epidemic.
    My name is David Hyde Pierce. Like 15 million Americans 
today, my family has a connection to Alzheimer's disease and 
dementia. We lost my grandfather to Alzheimer's in 1992, and my 
dad died in 1998 with vascular dementia that was also probable 
Alzheimer's, and my family saw not only their loss but also, of 
course, the toll it took on my grandmother as she tried to care 
for my grandfather and then my mom as she tried to care for my 
dad. Those experiences are familiar to just about everyone in 
this room and across the country.
    When I first testified before the Labor, HHS, Education, 
and related agencies' Committee on Appropriations in 1998, we 
were seeking increased funding for Alzheimer's research. I 
remember I was here in D.C. with Maureen Reagan, and we had the 
wild dream of getting a billion dollars, and here we are almost 
20 years later, and we are just 9 million short of that goal.
    For many years, we were spending so much to care for those 
living with dementia while investing so little in research, and 
as has been said today, since then, we have seen the unanimous 
passage of the National Alzheimer's Project Act and the 
establishment of the first National Plan to Address 
Alzheimer's, last year this historic increase in research 
funding for Alzheimer's that effectively doubled the investment 
of just 6 years ago, and those advances would not have been, 
would not have happened, without your leadership here in 
Congress, and I thank you for your support and for listening to 
the support of these amazing people behind me.
    I have had the honor and the privilege to serve on the 
Advisory Council on Alzheimer's Research, Care, and Services 
formed through the National Alzheimer's Project Act as a 
caregiver representative, and the first thing I want to say 
about that council is it has been so wisely and compassionately 
run by Ron Petersen. He has done an extraordinary job and kept 
us all aware of why we are there.
    It is also, by the way, one of the most happily combative 
situations I have ever been in my life. It is extraordinary 
when you have advocates who feel that ``It does not matter what 
the cost is. This is what we need,'' and people who work in the 
Federal Government who say, ``Well, it actually does kind of 
matter what the cost is.'' Then we have the public comment, 
this extraordinary group of just folks who come, some of them 
white-hot with rage and frustration, and they just take off the 
gloves, and they say what they feel, and we all get to 
experience what the real need is in this country. It is an 
amazing council, and it has made progress, as Ron has alluded 
to.
    I think we have had progress in focus of the council, and 
through the National Plan to Address Alzheimer's Disease we 
have a developed a research road map and milestones that will 
guide the development of new diagnostics, treatments, and 
interventions. We have learned more about the other related 
dementias and conditions, like Down syndrome which has a strong 
link to Alzheimer's disease, and we have looked at the State of 
clinical care and long-term supports and services.
    However, similar progress has alluded us in the goals to 
enhance care quality and efficiency, and to expand support for 
people with Alzheimer's disease and their families. This 
investment in research that we have been talking about is so 
vital, but we need an equally strong investment in caring for 
those living for this disease today. We need to prioritize 
actions within the National Plan that will have the greatest 
impact on improving the lives of those living with dementia and 
their families, and we must find a way to develop action steps 
with quantifiable metrics that will show progress in meeting 
those goals.
    I will give you an example. After diagnosis, for many 
people, that is the end. The doctor has nothing else to say to 
them. ``Here are some pills. I will see you in a year.''
    They have no idea what to do or where to turn. They are 
left without an understanding of what to expect from the 
disease or even any steps that they could take to manage other 
conditions that many people at this age have, like diabetes or 
heart disease. They are left completely lost and uncertain as 
to what to do.
    Although there is no treatment for Alzheimer's, there are 
many things that can be done to improve a family's ability to 
cope with the disease. Creating a care plan can help prevent 
unnecessary hospitalizations by creating new ways to manage 
medications.
    We have people's whose ability is compromised because they 
have the disease and people whose ability is compromised 
because they are taking care of someone with the disease. They 
are stressed, they do not know which way is up, and they are 
supposed to be worrying about, you know, medication 
prescriptions and tell the right pill and when to have it, so a 
plan can help them. It can help with a strategy to prevent 
falls.
    The HOPE for Alzheimer's Act, which is a bill supported by 
many members of this Committee, does just that by creating a 
benefit for care planning after diagnosis. HOPE provides a road 
map for the people living with dementia and their caregivers. 
HOPE ensures that those living with the disease can have an 
active role in their care plan and ensures receiving the best 
care that can be provided and also ensures that their diagnosis 
is included in their medical record, so any time they go to the 
hospital or are dealing with another one of these illnesses, 
people know exactly who and what they are dealing with.
    On top of that, a recent economic study of the HOPE for 
Alzheimer's Act found that it would reduce Federal spending by 
$692 million over 10 years if implemented today, so I urge the 
Congress to consider this important legislation that will not 
only benefit those living with Alzheimer's and their caregivers 
but will actually save the government money.
    Finally, I want to talk about the idea of American 
exceptionalism, which I have been thinking about in the context 
of this Committee. I kind of believe in American exceptionalism 
not as something we are given or born with but as something we 
must earn and justify and prove, and I believe this fight 
against Alzheimer's and dementia is a great proving ground.
    For years, we have had the potential and the skills and the 
resources to lead the world in researching dementia and 
eventually eliminating it. For years, we have had the potential 
and the skills and the resources to show the world by example 
the best way to truly care for those living with dementia, but 
I believe our exceptionalism does not come with our potential; 
it comes with our seizing our potential and acting on it, and 
that is what the members of this Committee have done. Madam 
Chairman, Senator McCaskill, that is what you have been doing, 
and I encourage you to continue to do that.
    We can bring Alzheimer's disease to its knees. We can give 
suffering families in America and throughout the world the 
greatest gift we could possibly give--hope.
    Thank you.
    The Chairman. Thank you very much for your powerful 
testimony. Thank you.
    Ms. Bradley.

              STATEMENT OF POLLY BRADLEY, DIRECTOR

             OF ADULT DAY SERVICES, SOUTHERN MAINE

              AGENCY ON AGING, SCARBOROUGH, MAINE

    Ms. Bradley. Chairman Collins, Ranking Member McCaskill, 
and distinguished members of the Committee, thank you for the 
opportunity to speak about the Southern Maine Agency on Aging's 
efforts to support Maine families with dementia.
    I am here as a professional and the child and caregiver of 
someone who suffered from dementia. We are hoping for a cure. 
However, until a cure is found, organizations like SMAA, 
Southern Maine Agency on Aging, are providing a tremendous 
level of support for families coping with these huge 
challenges.
    I would like to speak about the importance of adult day 
services and the impact that they have on the members who 
attend. These members are teachers, veterans, doctors, 
businessowners, our moms, our dads, and dementia has slowly 
robbed them of all their good years, their last years. SMAA is 
on the leading edge of helping all these folks.
    Since 2002, Southern Maine Agency on Aging has developed 
two state-of-the-art adult day centers. They are, arguably, the 
best in New England and maybe even in the United States. 
Knowing that Maine is the oldest State by medium age, we knew 
we needed to redesign our programs. We embarked on a complete 
overall, and shifting to a medical model which is person-
centered, we also wanted to ensure that the model would be 
affordable, so every design detail, from the colors to the 
textures to the fabrics, the lighting, just every detail in 
design on the latest research is what we did so it would be the 
best for our members.
    Our experience, as well as many research studies, have 
demonstrated that social interaction and activity helps 
maintain the physical and emotional health as maintaining 
cognitive functioning.
    The centers that we have developed offer multiple rooms, 
giving us the ability to run several different programs 
simultaneously that are developed for each person as an 
individual person-centered plan. The centers offer multiple 
rooms--okay. Sorry.
    We have designed these centers on a sustainable financial 
model, allowing us to care for a total of 75 members per day 
within both centers. We employ over 40 people in both centers, 
and SMAA itself provide support to over 200 families, helping 
with the support of their care--the loved ones.
    Another differential is our professional staff. In addition 
to the highly trained and compassionate direct service 
professionals, we employ two social workers, an RN, a licensed 
recreational therapist.
    Our centers offer our members a home-away-from-home 
environment, and we have a number of volunteers assisting our 
staff.
    We collaborate with local universities, which allows us to 
offer practical training in social work, EMT, occupational and 
recreational therapy students who are focusing on geriatrics at 
both the undergraduate and graduate levels.
    All of this expertise gives our members the opportunity to 
socialize and make friends throughout the day in a supportive 
day center, reducing depression, anxiety, minimizing the risk 
of falling. Our programs include a number of activities--pet 
therapy, exercise, music, art therapy, gardening, cooking, a 
French club, newsletters. We serve nutritious meals and snacks. 
We offer transportation. We offer hygiene, showering included.
    Several times a year our members work on special projects, 
like making dog treats for local animal shelters and other 
community projects. The activities give them a tremendous sense 
of pride in being able to contribute to the local communities.
    Overall, you can just visualize how this is a wonderful 
experience for all the members that come every day and enjoy 
all these things I just spoke to.
    Family caregivers tell us that their loved ones are 
happier. They come home from the centers wanting to talk about 
their day. They refer to our centers as their club, which makes 
them eager to return.
    Our program extends to the caregivers because we know that 
it can be a lonely and depressing journey for all of them. Our 
caregivers are our spouses, adult children, grandchildren, 
among others, who desperately want their loved ones to stay 
home. For many, avoiding a residential situation is their goal. 
The word ``institution'' speaks for itself. In the eyes of many 
people, it is not an option.
    Our family caregiver programs are designed to provide 
support, counseling, education, and other referrals. Our social 
workers work closely with the caregivers each day, allowing 
them to share their innermost feelings, which is far difficult 
for them to do, regarding stress, self-care, behavioral 
challenges with their loved ones, their hopes, and their 
doubts. In addition, we have the Savvy Caregiver, which is a 
national evidence-based program, as is Savvy Caregiver 
Advanced, for ongoing support and training throughout the 
journey.
    Family caregiver support is a must for the overall health 
and well-being of the caregiver and the member. Research shows 
that caregivers have a higher risk of heart disease, lower 
levels of self-care, increased substance abuse and depression. 
Our centers are an oasis for caregivers to reconnect with 
friends, or in the case of adult children, allowing them to 
continue work knowing that their loved one is safe and engaged. 
This has a ripple effect to better health and happiness, and 
creating better days for everybody involved.
    On a more personal note, I was extremely blessed to have 
spent the last 10 years caring for my dad, Tim Stewart, who had 
frontal lobe dementia. My father was a very successful 
businessman. My parents were tireless volunteers and generous 
patrons of many charities. He was a charismatic person who 
loved being the center of attention, telling jokes, and making 
people laugh. Everybody loved him.
    Frontal lobe dementia takes all filters away. This was true 
of my dad. His extroverted nature manifested into his dementia, 
and then became the ``Crazy Old Bald Guy.'' He, however, was 
very proud of this name. He wore clothing, hats, made bags with 
the logo of this on them.
    This became emotionally and physically challenging for all 
of us, especially my mother. His extroverted nature, blended 
with dementia, made every day a struggle.
    Local businesses and restaurants which he had frequented 
for years asked him not to return because of his behavior. His 
world/our world shrunk quickly. We were lucky to have the means 
to hire caregivers during the day to give my mom a break, but 
even with hired support the burden is still very heavy.
    SMAA's first new center in Falmouth did not open in time to 
help for my dad. We made the difficult decision to place him in 
an institution, because my parents' involvement with SMAA, we 
are honored to have the Stewart Center carry on our name. We 
treasure the memory of my dad cutting the ribbon at the Stewart 
Center before dementia stole his last bit. We lost my dad in 
December.
    Everyone, at some point, will be touched by this disease. 
It is staggering to know that every 67 seconds someone in the 
U.S. develops Alzheimer's. Until we find a cure, it is 
comforting to know that centers like the Sam L. Cohen Center 
and the Stewart Center are here to help.
    Thank you.
    The Chairman. Thank you very much for your excellent 
testimony.
    Ms. Bradley. Thank you.
    The Chairman. Ms. Baron.

               STATEMENT OF LISA P. BARON, J.D.,

                EXECUTIVE DIRECTOR, MEMORY CARE

              HOME SOLUTIONS, ST. LOUIS, MISSOURI

    Ms. Baron. Thank you, Chairman Collins, Ranking Member 
Senator McCaskill, and distinguished members of the Special 
Senate Committee on Aging. Thank you for this opportunity to 
highlight a program that extends and improves time at home for 
families who are caring for someone with Alzheimer's, dementia, 
or cognitive impairment.
    My name, as you know, is Lisa Baron, and I am honored to be 
here today. I am honored to lead, and to have founded, Memory 
Care Home Solutions.
    We all know that we are facing an incredible national 
crisis with Alzheimer's disease and that there is an incredible 
need to find a cure by 2025. However, it is also important to 
recognize the work that can be done today to help the 15.9 
million unpaid dementia caregivers who are at home right now.
    I am here to talk about a bright spot, a ray of sunshine in 
what is a very dark landscape in Alzheimer's. I founded Memory 
Care Home Solutions 16 years ago, also as a result of my family 
experience.
    Now Memory Care Home Solutions particularly serves low-
income families. Fifty-four percent of the people we serve have 
an annual income of $20,000 or less, and because of generous 
foundations, corporations, donors, the State, we are able to 
provide this service free of charge.
    My mother-in-law, Betty Baron, whose children are behind 
me, began experiencing signs of Alzheimer's disease in 1997. 
Our family was blessed with educational and financial 
resources. Yet, nothing prepared us for the nightmare of 
Alzheimer's disease, and we can only imagine what families are 
dealing with and what their challenges are.
    For our family, ultimately, we were most concerned with my 
father-in-law. Was he eating enough? Was he sleeping enough? 
Was he isolated?
    My in-laws lived in a wooded area in St. Louis, and one 
night my father-in-law was very busy making dinner, and Betty 
just left the house undetected. After a really traumatic night 
and a lot of searching, the fire department found her. She had 
fallen into the bottom of a window well, and miraculously, she 
was totally unscathed, but it was really at that moment that I 
knew that I had to help other families who are facing the 
destruction of Alzheimer's disease, and that is totally what 
Memory Care Home Solutions does. It helps prevent these sorts 
of family crises.
    I did not know exactly where to turn, so I turned to 
Washington University and the Alzheimer's Knight Research 
Center, and they directed me to the profound body of evidence 
on proven interventions to help families like ours, but I must 
say that I was really stunned to learn that there is no 
coherent, organized system to help families with behavioral 
interventions in their home now, and so our professionals went 
to work building on this evidence to make a community-based 
intervention for families facing dementia.
    I highlight this connection between research and between 
community health because if it was not for your generosity, for 
your prioritizing of this incredibly important issue on a 
Federal level, we would not have a base of knowledge from which 
to develop our program nor would we have the National 
Alzheimer's Protection Act, which specifically calls for, among 
many other things, expanding supports for people with 
Alzheimer's and their families.
    Yes, we need a cure, but yes, we also need to get proven 
interventions into the hands of the families who are caring for 
these 5.4 million people right now. Our program is a model, and 
it can be expanded and replicated throughout the United States.
    With Memory Care Home Solutions, social workers and 
occupational therapists from our staff go directly into the 
homes. They uncover issues that the family is dealing with. 
They teach them behavioral strategies. They set them up, 
whether it is in the bathrooms, the kitchens, wherever. They 
practice techniques with them. They practice transferring with 
them. They set families up for success.
    We also educate families on many sort of Alzheimer's 
complications, like urinary tract infections or bed sores or 
falls or dehydration.
    This focus not only helps the families, of course, and the 
patients, but it also saves billions of dollars. In 2015, as 
has already been mentioned, the national estimated cost for 
Alzheimer's and related dementia reached $236 billion annually.
    We know that up to half of older adults who have some form 
of dementia make at least one visit to the emergency department 
annually. Of those, 40 percent are ultimately admitted to the 
hospital often for stabilization or due to comorbidities, and 
of those that are discharged, 58 percent return within 30 days. 
This is an incredible cycle that really underscores the need 
for family education.
    Memory Home Solutions intervention results in a two-third 
reduction, an average of a two-thirds reduction, in 911 calls, 
emergency department visits, and readmissions. Programs like 
ours create a win-win. There is a significant increase in 
quality of life, and there is also a significant decrease in 
cost.
    Ninety-one percent of the people who remain in our program 
with us also remain at home in the community. In Missouri 
alone, this piece alone, of remaining at home rather than being 
prematurely institutionalized, translated into a cost savings 
of over $30 million.
    Unfortunately, most families across our State do not have 
access to this type of care, and I urge the Committee to 
allocate funding and resources to equip all families in the 
United States with effective, nonpharmalogical forms of 
treatment for those with dementia.
    I would like to close now with a quote from Dr. Covinsky of 
UCSF, cited in the Administration on Aging's White Paper: ``If 
these interventions were drugs, it is hard to believe that they 
would not be on the fast track to approval. The magnitude of 
benefit and quality of evidence supporting these interventions 
considerably exceed those of currently approved pharmalogical 
therapy for dementia.''
    I thank you for this incredible opportunity. It has really 
been an honor to be here, and I urge you to think about the 
families of those with Alzheimer's who are in desperate need of 
all of our help. Thank you.
    The Chairman. Thank you very much for your excellent 
testimony. Thank you. Thank you.
    Dr. Petersen, I am going to put up a chart that compares 
the amount that we are spending today on some other very 
important diseases--I think the staff will bring you a copy of 
the chart if they have not already--compared to what we are 
spending on Alzheimer's and related dementias.
    You are the source that I quote all of the time on the fact 
that we should be spending $2 billion a year to get the kinds 
of breakthroughs that we need, and if you look at what we spend 
on cancer, HIV/AIDS, cardiovascular disease, we have seen that 
those investments have paid dividends, that they have resulted 
in better treatments and longer lives.
    One question that I get from my colleagues is: If we keep 
increasing the funding for Alzheimer's disease research, as I 
have strongly advocated, are we making investments that will 
allow possible treatments that are in the pipeline now to be 
brought to fruition more quickly?
    In other words, what would be the result of increasing the 
investment to the $2 billion a year that the Advisory Council 
recommends?
    Dr. Petersen. Well, thank you, Senator, for that question.
    It is very insightful from the beginning because, I think, 
as you are suggesting that the investments we have had in 
cancer, HIV/AIDS, and cardiovascular disease has indeed 
resulted in a reduction in morbidity and mortality in those 
disorders.
    We can--the scientific community is poised to make these 
kinds of contributions. There are numerous pipeline drugs out 
there that are ready to be deployed into clinical trials that 
would, in fact, inform us on potential therapies for these 
diseases, and I think if we are able to launch, if sufficient 
funding were available, we would be able to see the results of 
these clinical trials sooner, more efficiently, and have an 
impact, and reduce that cost and the individual suffering to 
our country.
    The Chairman. Thank you.
    Mr. Pierce, you mentioned that you first testified before 
Congress, and I believe I was at that hearing. I think it was 
1998 that you said. What has changed subsequently in the 
advocacy efforts for those who are seeking to help us make 
progress in this area?
    Mr. Pierce. Thank you, Senator.
    You know, the biggest change that has happened in the years 
that I have been involved is a direct result of research. 
Research has led us to be able to diagnose people at a younger 
age. Earlier in the disease, excuse me, and because we can do 
that, there are more people who are speaking for themselves--
people who have the disease, who are here advocating for 
themselves. That is an incredible step, and I remember from our 
council meetings, some of the vigorous input from the public 
comment was people with Alzheimer's, who said, ``You know, stop 
saying that we are dying of Alzheimer's. We are living with 
Alzheimer's.''
    Now I remember when we all started advocating we had to say 
people were--we were trying to get people's attention. Take a 
look at this disease. Do you realize what is happening?
    Not only do we no longer have to do that, but we have got 
people with the disease saying, ``Shut up already. This is a 
part of our life that we are trying to get along with.'' That 
is where we find ourselves, and why all this talk about funding 
caregiving and better care and better treatment is so vital.
    The Chairman. Thank you.
    Ms. Bradley, when I visited the center that is named after 
your father, I was so impressed with the wonderful variety of 
activities that were going on. It obviously was a very 
stimulating environment for your clients, but it was also 
giving a much needed break to their caregivers, many of whom 
were older individuals.
    I was curious about the funding for the center. Now, 
obviously, the Area Agencies on Aging are funded under the 
Older Americans Act, but do the individuals who come to your 
center, sometimes every week day, pay themselves, or is there 
help under the Medicaid or Medicare programs for the kind of 
enriching environment and safe environment that you are 
providing?
    Ms. Bradley. Yes, we have a number of different funding 
sources. We do have an hourly rate for people for private pay, 
and then we have veterans funding. We have some State funding 
through the Department of Health and Human Services. We have 
the MaineCare day health, which is through the MaineCare 
Program, so if people are private pay, there are some subsidies 
that they can get in addition, so there is a number.
    The social workers will meet with the folks and sit down 
and discuss any kind of funding possibility, but for the most 
part the percentage in Falmouth we have seen is mostly private 
funding.
    The Chairman. Thank you. The kind of service you are 
providing is just wonderful, and I really commend you for it.
    Ms. Bradley. Thank you.
    The Chairman. Senator McCaskill.
    Senator McCaskill. Thank you very much.
    I am so appreciative of all of you being here today. I am 
going to hope everyone understands. I would like to spend most 
of my time with Ms. Baron because of the model that she is 
embracing and the impact it has had on my community, my home 
town of St. Louis.
    I am curious. How do families find you?
    Ms. Baron. Sure. We do--we spend a great deal of time and 
energy doing public outreach and education, and we also connect 
with family physicians and do lots of training for discharge 
planners within hospitals, so we get referrals from the 
wonderful Alzheimer's Association--a very active, wonderful 
chapter--in St. Louis, and we also get referrals through word 
of mouth, through our public outreach and education to 
hospitals, adult day care centers, other referring sources.
    Senator McCaskill. We always want to focus on how much 
everything costs, and so I am interested in the model here. You 
say 54 percent of the families you serve have household incomes 
of less than $20,000, and you are providing this free of 
charge. Can you give us what that--with the services you are 
providing these families, can you monetize that for us----
    Ms. Baron. Sure.
    Senator McCaskill [continuing]. and tell us approximately 
what it is costing your organization----
    Ms. Baron. Yes.
    Senator McCaskill [continuing]. to provide this?
    Ms. Baron. Just on that specific piece, which is the in-
home piece, it costs us between $1,800 and $2,100 based on how 
many occupational therapy visits the family takes.
    Senator McCaskill. Less than one emergency room visit by 
multiples?
    Ms. Baron. Right.
    Senator McCaskill. Have you thought about, have you 
discussed with, integrating your services into the diagnostic 
process? Has there been an effort?
    I mean, it seems to me--the Chairman and I were talking to 
each other after your testimony--if you were a pill, you would 
be approved----
    Ms. Baron. Right.
    Senator McCaskill [continuing]. and we would pay for it.
    Ms. Baron. Yes, just like that quote.
    Senator McCaskill. Because you are not a pill----
    Ms. Baron. Yes.
    Senator McCaskill [continuing]. and you do not have Pharma 
lobbying for you and you do not have a big company marketing 
you, like all the commercials we see on TV, that if we could 
only somehow get our doctor to give us this drug, we are going 
to be young and thin and beautiful and happy and have sex for 
the rest of our lives.
    You know, you are struggling to deliver a basic, and it is 
so frustrating to me that we cannot figure out how to integrate 
this basic, particularly because it is going to save us money, 
so have you talked to Wash U. or to the doctors at Wash U. 
about actually integrating your program into the diagnostic 
process?
    Ms. Baron. Yes, we have, so we have a number of pilots that 
are going on now to look at how to integrate in a structured 
way through hospital ways so that it is, like you said, a 
systematic, structured partnership in which they are referring 
to us directly.
    Senator McCaskill. Do you provide these services for 
families that can afford to pay for it?
    Ms. Baron. We do. We do. It is an equal opportunity 
provider, and of course, we do provide.
    Senator McCaskill. I hope you charge them double.
    Ms. Baron. We do not charge. We charge them the exact same 
amount we charge the other ones.
    Senator McCaskill. I am teasing, but you know, I would like 
to get you more money to help serve.
    Ms. Baron. Right. That would be great.
    Senator McCaskill. I think we forget sometimes. I mean, I 
love it that all these people are here, but there are so many 
families that could not even dream of coming to Washington, DC, 
could not even dream of being on an airplane----
    Ms. Baron. Right.
    Senator McCaskill [continuing]. or dream of doing anything 
outside of trying to figure out a way, and in Missouri, we have 
not even expanded Medicaid, this becomes an even more difficult 
problem because there is this gap. They are too poor to get 
help to get insurance coverage, and we have not expanded the 
Medicaid program, so they are falling into this hole.
    I am a little desperate to figure out how we can migrate 
this program more places because it makes such sense.
    Ms. Baron. It really does. Thank you.
    Really, to replicate it would not be difficult. You know, 
we have looked into that, and basically, with a very small 
infrastructure and a small staff we could be integrating this 
in many, many cities.
    Senator McCaskill. What is your annual budget?
    Ms. Baron. 1.2 million.
    Senator McCaskill. How much of that is donated?
    Ms. Baron. 99.93 percent.
    Senator McCaskill. On an annual basis.
    Ms. Baron. Right.
    Senator McCaskill. Okay.
    Ms. Baron. Well, I will leave it at that.
    Senator McCaskill. Well, I look forward to continuing to 
visit with you because I think there ought to be some 
strategies that we ought to see if we cannot get this more 
institutionalized because this kind of basic outreach to 
families, to me, is a game-changer in many ways, and I think it 
is very, very important. You should be very proud of the work 
you have done.
    Ms. Baron. Thank you. It is a great staff and a great group 
that is supporting us. Thank you very much. Thank you.
    The Chairman. Senator Tillis.
    Senator Tillis. Thank you, Madam Chair. Thank you for this 
meeting and welcome to everyone here.
    I met with the North Carolina delegation earlier this 
morning. They came to my office. Are any of them present?
    It was a huge organization or a huge group, and I was happy 
to see them because this is something that I first got 
introduced to back in 1998 with my own grandmother.
    I think it is very important. There are very few 
opportunities where the head and the heart kind of align in 
areas of public policy in such a compelling way as this issue.
    Clearly, if you have been touched by someone who has had 
Alzheimer's, you know the personal drain that it has. I was a 
caregiver, along with my mother and my two aunts, with my 
grandmother. Trying to educate myself so that we could become 
better caregivers was a very important part of what I was 
doing, and a lot of that you understand, just how our instincts 
for providing care are almost the opposite of what you really 
need to do to provide care that is in the best interest of the 
person suffering from Alzheimer's, so we have to spend far more 
resources today, until we can find a cure, on trying to provide 
the support and the education that the caregivers need so that 
you can enrich their lives and they are in a better position to 
enrich the lives of people who suffer from Alzheimer's.
    I, for one, intend to be an advocate. I have a purple tie 
on. I have also got purple socks on, by the way, and a pen.
    I want to start--actually, Mr. Pierce, I just want to thank 
you. I am a relatively new Senator. I have only been here for 
about 15 months, and people always ask, what is it like being 
in the Senate? I always struggle to come up with ways to 
describe it, but from this point going forward I am just going 
to tell them it is happily combative. That is a good phrase.
    Mr. Petersen--and I want to come back to you, Mr. Pierce, 
but I want to start with you, Mr. Petersen. The chairlady asked 
you how that additional billion dollars will be spent. I 
supported and voted for the funding that increased the spending 
by 60 percent.
    Can you give me some sense of how that additional money 
will be immediately deployed? You were talking about funding 
clinical research for clinical trials for potential promising 
treatments or cures. How is that money that has been 
appropriate now--how is that going--what precisely are we going 
to see in terms of net new developments?
    Dr. Petersen. Thank you for that comment.
    I think if you view the program on research from different 
perspectives, there is the basic science part, there is a 
clinical diagnostic part, and there is a treatment part.
    On the basic science diagnostic part, while we know a lot 
about this disease, the plagues and the tangles, the proteins 
that cause them, it is much more complicated than that. I 
referred to the conference last week at NIH, where people 
really focused on the fact that this is a multifactorial 
process. It is going to be a long haul, but we need to 
understand the multiple interacting parts, so that is on the 
basic science side.
    On the clinical diagnostic side, David alluded to the fact 
that we can make the diagnosis now much earlier in the disease 
process than we could five to 8 years ago. We can now image the 
proteins that we think are actually causing the disease in the 
brain in normal people while they are asymptomatic. That 
affords us an opportunity to intervene at that point in time 
with effective therapies, so on the therapeutic side, the third 
prong, the clinician and the investigators who are designing 
the clinical trials now can define their population of 
participants to be involved in that clinical trial much more 
effectively, so if I have a therapy that is aimed at this 
amyloid protein that makes the plaques, I can now image those 
people to make sure they have the amyloid protein.
    I think now with increase awareness and funding across the 
line in all three prongs we will be able to be much more 
effective and much more efficient at designing clinical trials, 
and getting effective therapies out there, at the same time 
looking more broadly as to the multiple components that 
contribute to this disease.
    Senator Tillis. Thank you.
    Ms. Baron, I am going to speak with you. I was in the 
legislature in North Carolina before I came here. If you do not 
mind, I am going to have my office contact you to talk a bit 
about the work that you have done, particularly with Missouri 
Medicaid, and talk about some things that may be relevant to 
some of my colleagues that are still in the legislature and 
working together with our Department of Health in North 
Carolina.
    Mr. Pierce, in my remaining time, I would like to ask you 
to expand a bit, I think, on a comment you made in an interview 
about the airplane model for caregivers. Can you tell me a 
little bit about that?
    Mr. Pierce. Yes. It is a--you know, on the airplane, they 
always say, when the oxygen masks come down, put on your own 
mask first before helping others, and that is a pretty potent 
image for caregivers taking themselves and us taking care of 
them.
    The stresses and strains and exhaustion, especially 
combined with, frequently, the age of caregivers, makes them 
incredibly vulnerable, and perversely, the more loving and 
devoted they are, the more vulnerable they are because the less 
they are willing to take a step away, and sometimes it takes 
almost an intervention, and this is the kind of counseling that 
a doctor or whoever, someone from the Alzheimer's Association, 
can give.
    As you were saying, it is kind of intuitive almost to say 
to someone, ``You want to take care of your husband? Go away 
for a few hours.'' That is because then you will be able to be 
restored and be renewed, so that is where that image comes 
from. Of all the diseases, this is the one because the person 
we are caring for is losing their ability to care for 
themselves and their judgment and everything else, and the 
horrible stories of wandering and--you know. We have to be the 
ones to care for the caregivers.
    Senator Tillis. Thank you.
    Thank you, Madam Chair.
    The Chairman. Thank you, Senator.
    Senator Whitehouse.
    Senator Whitehouse. Thank you very much, Chairman Collins, 
and thank you for how relentless you have been in this cause 
for so long. I really appreciate it.
    My equally relentless Rhode Island advocates led by Donna 
McGowan, who is terrific, and the things that were--the words 
that came up the most often in our conversation were care 
planning, and Ms. Baron, your conversation about how this works 
clearly takes us into that area of care planning.
    Dr. Petersen, you inhabit the health care system as a 
practitioner. It is a system in which reimbursement has huge 
consequences. In a fee-for-service system, care planning can be 
very hard to fit into a reimbursable mode for a doctor, and as 
we move away from fee-for-service, there is more opportunity, I 
think, because of the inherent cost savings that are possible 
from good care planning, to have that fit better into the 
medical model.
    I would be very interested in your thoughts, not only now, 
but if you wanted to take it as a question for the record and 
on reflection get something back in writing to the Committee, 
on: What are the things that we could best do in Congress in 
changing the way payments are made so that care planning 
becomes a built-in, baked-in part of the treatment for all 
Alzheimer's payments?
    I think we are moving in the right direction. Maybe what 
you will say is just keep doing what you are doing and move 
more away from fee-for-service and more toward results-based 
payment, outcomes-based payment, but what are your thoughts on 
that?
    By the way, Mr. Pierce, you played a lovely doctor on TV, 
so I do not mean to leave you out, but you did not need 
reimbursement in the same way.
    Dr. Petersen. He was a psychiatrist, though, right?
    Senator Whitehouse. Exactly. Dr. Petersen.
    Dr. Peterson. Thank you, Senator Whitehouse, for that 
question.
    It is important, and it comes down to, unfortunately, an 
aspect of fee-for-service in terms of reimbursability, but I 
think it also is incumbent upon us as practitioners to ask our 
systems: Who best can provide this care? It may not be the 
doctor. It may not be the physician in the office. It may be 
the rest of his care team, and I think the HOPE Act speaks 
toward that.
    If we can, in fact, document what is going on in the office 
and does that entitle this patient then to a whole host of 
services that hopefully would be reimbursable because one of 
the things we are doing with the Advisory Council on the 
National Plan--in this phase, we have been focusing on research 
early on, and I think reasonably successful. A lot of work to 
do, but we are also now turning to care and services, so we are 
in the planning stages for a summit on care and services. What 
is being delivered? What is out there? What does the evidence 
show us? As Lisa and Polly have demonstrated to us, that in 
fact you provide these services; they are cost-saving to the 
system down the road, so we are trying to take a look at that 
from the National Plan perspective of: How can we document 
that? How can we come back with recommendations to Congress--if 
you do this it is going to save this down the road, and most 
importantly, it is going to help our families and our 
individual patients?
    I think all of our systems need to take a relook at this 
whole issue of what we can do for planning beyond the 
diagnosis. Now here is what we can do for the benefit of the 
patient, family, and the system.
    Senator Tillis. Good. Well, I would be really interested in 
staying in touch with you on that subject.
    We have two particularly good primary care groups in Rhode 
Island--Rhode Island Primary Care and Coastal Medical. Both of 
them are operating as ACOs, and as they do that, they are able 
to engage with their patients in a completely different way and 
do things that do not require medical intervention so much as 
social intervention.
    Dr. Petersen. Right, right.
    Senator Tillis. Because it saves money on the medical 
intervention, they can go ahead and do it and make it succeed.
    My favorite example is a community health center that 
bought a guy an air conditioner because in the summer he was 
coming to cool off in the emergency room and it was running up 
tens of thousands of dollars, and they finally said, well, for 
$199 we can give the guy an air conditioner. He can watch TV, 
cool at home, and sure enough, they saved it 50 times over, and 
it is trying to get the care planning into the mode where 
primary care physicians are building that in that I think is 
going to be----
    Dr. Petersen. And demonstrate value to the primary care 
physician.
    Senator Tillis. Precisely.
    Dr. Petersen. We are saving you time. We are making it 
better for your patients, and develop that system.
    Senator Tillis. Stay in touch. Thank you.
    Dr. Petersen. We will do that. Thank you.
    The Chairman. Thank you, Senator.
    Senator Donnelly. Thank you, Madam Chair, and thank you for 
constantly making sure this issue is directly in front of us 
and for pushing all of us on a constant basis to crack the code 
on this.
    I want to thank all of my friends and neighbors from 
Indiana who have come all the way out here to be part of this, 
who I met with this morning. They are waving at me from the 
back.
    I am not paying your gas on the way home. I assure you of 
that, but for you to be here and to be visible and to be a sign 
of how important this is, is absolutely critical, and that goes 
to all of you as well--that you help us to make better 
decisions, and Ms. Baron, one of the things I wanted to ask you 
about is the Alzheimer's Association recently released a report 
noting that Americans provided 18.1 billion hours of unpaid 
care to family. Can you talk a little bit about how the 
families you work with try to balance out the caregiving and 
the obligations they have at their job?
    Ms. Baron. Sure. I think one of the things that we really 
do when we go into homes is we get to know the families and the 
things with which they are dealing, and of course, like you 
were talking about, things like recidivism, tardyism, lack of 
productivity at work are huge issues for family, but getting to 
know them and connecting them to resources is really key.
    I will give you an example. A woman who works at, let's 
say, Centene, and she gets up in the morning at 5 so she can 
dress her mother and bring her to adult day care by 7:30 and 
then get to her job by 8:30.
    Once we have gone into the environment, we can see and find 
out: Is there an adult day care that is close? Do they have 
transportation? We will actually connect them to that adult day 
care and set up the transportation so she is not doing that 
herself.
    It is a very customized service for each individual family, 
and the caregivers we are serving are absolutely burnt out. 
They do not need another list. They do not need another flyer. 
They do not need another piece of information. They need 
someone that is actually going to connect them to the resources 
without them doing it.
    Senator Donnelly. Do you see many families that have access 
to paid family leave to help with this situation?
    Ms. Baron. No. I would say that most of the families that 
we are serving are much older, at least 65 and above for the 
care receiver, and the caregivers, there is a very small 
portion of people that are actually taking advantage of that.
    Senator Donnelly. Okay.
    Ms. Baron. We do have a fair number of people, though, that 
have had to take time off, and they actually lose their job and 
then go back into the career mode.
    Senator Donnelly. Dr. Petersen, can you give us a brief 
update on the State of the science of this disease?
    I am from Indiana. Lilly has worked for nearly 30 years on 
trying to crack the code on Alzheimer's, has worked on or has a 
product now that targets amyloids, and I know that there are 
also researchers who are working on the Tau hypothesis to learn 
more about the Tau tangles.
    Can you tell me a little bit more about these two theories, 
how this is moving along, where you see promise to stop the 
plaque or to move us forward?
    Dr. Petersen. Thank you very much, Senator Donnelly, for 
that insight into the pathophysiology of the disease.
    Alzheimer's disease is defined as a plaque and tangle 
disease. How do you make that diagnosis? Well, prior to now, 
when the patient died, passed away, you looked at the brain 
under the microscope. You stained the brain. If it has plaques 
made of this amyloid protein, has tangles made of this Tau 
protein, you have the disease.
    Fortunately, now we can image those two proteins in life, 
but as I indicated earlier, at the conference last week at NIH, 
plaques and tangles are important, but there are other 
proteins. Something called alpha-synuclein which we see in 
Parkinson's disease, something called TDP-43 which affects 
memory, vascular disease, little strokes, blood vessel 
problems--all contribute to this complex clinical picture, so I 
think companies like Lilly are at the forefront of not only 
coming up with therapeutics for the amyloid protein, for the 
Tau protein, but also the diagnostic measures of seeing them in 
life in people.
    I think where the field is moving is toward a better 
characterization of these multiple pathologies. Plaques and 
tangles, clearly very important, that is Alzheimer's disease, 
but there are other contributing factors. We are now getting 
the capability to be able to identify those other elements in 
the pathologic process and, hopefully, design therapies to get 
into them as well, so as I indicated earlier in my remarks, I 
think now we can refine clinical trials to those specific 
participants who have that pathologic characteristic.
    It was not too many years ago, in fact, Lilly was one of 
the companies that was at the forefront and did a very major 
study with solanezumab, one of their antibodies aimed at 
amyloid, only to find out after the fact that in sub-subgroups 
of people participating in the study, up to 30 percent of them, 
did not have that protein in the brain to start with, so if you 
have got a drug aimed at that protein, you are dead in the 
water from the get-go.
    Now, with refined biomarker and imaging, we can be very 
specific of the people we are trying to treat with a specific 
intervention. That is where we are headed.
    Senator Donnelly. Well, to all of you, to those who provide 
care every day, thank you. It is God's work that you are doing.
    Doctor, for the research you are doing to crack the code, 
we are incredibly grateful.
    Mr. Pierce, for being the face of this, for being out 
front, for bringing attention to this to try to end this, we 
are so grateful, and to all of you who have come, you are the 
ones who are the face of this every year to all of the members 
here, to all of my friends, and we could not do this without 
you, so God bless you, and travel home safe. Thank you so much.
    Thank you, Madam Chair.
    The Chairman. Thank you.
    Senator Warren.
    Senator Warren. Thank you, Madam Chair, and thank you for 
all the hard work that you have done to draw attention to the 
impact of Alzheimer's on families all across this country.
    I would like to look at another aspect of Alzheimer's. The 
Alzheimer's Association estimates that in 2016 5.4 million 
people will be living with Alzheimer's and that more than two-
thirds of them will be women. For a long time scientists 
thought that this lopsided figure was solely because women live 
longer than men, but new research suggests that biological and 
genetic sex differences may contribute to the higher disease 
incidents among women as well.
    Now it seems pretty obvious that researchers should be 
looking for sex differences when they study Alzheimer's. The 
1993 NIH Revitalization Act requires the enrollment of women in 
clinical research, and today about half of all trial enrollees 
are women, but according to a report that I requested from the 
nonpartisan Government Accountability Office that was published 
last fall, there is not much information about what that 
breakdown looks like inside particular NIH institutes or 
disease areas like Alzheimer's, and despite the law, we also do 
not know whether researchers are actually complying with the 
requirement to analyze sex differences in their studies.
    Dr. Petersen, could you explain why it is important to 
consider sex as a variable in medical research in Alzheimer's 
disease?
    Dr. Petersen. Thanks, Senator Warren.
    I think that is an important issue, and I think it is 
receiving increasing attention. There are entities within the 
Alzheimer's Association, other advocacy groups that are really 
focusing on women's issues in Alzheimer's disease. There are 
even women, Researchers Against Alzheimer's disease, led by 
Robbie Brinton at the University of Southern California.
    It is an important issue, and it does vary over time. There 
are more women with Alzheimer's disease than men partly because 
they live longer, but as you imply, there are biological 
explanations. The hormonal interaction of certain genetic 
characteristics and perhaps treatment characteristics actually 
do fluctuate over time.
    Remember the Women's Health Initiative?
    Senator Warren. Yes.
    Dr. Petersen. It implied that maybe if you treat women with 
estrogen after menopause that will protect them against 
Alzheimer's. Turned out that when you treated women with 
estrogen later in life there was actually an increased risk 
factor for Alzheimer's disease, so it may be that there is a 
bimodal type of an effect. If you treat earlier, it is 
protective. If you treat later, it is not protective. That 
implies not only is there a sex, interaction but there may be a 
genetic interaction as well, so apolipoprotein E4 is a risk 
factor for Alzheimer's disease. Normal protein. We all have it. 
Comes in three varieties--E2, E3, E4. The E4 variety portends 
an increased risk for Alzheimer's disease. It is about equally 
distributed in men and women, but it plays out differently in 
men than in women, and that may in fact be due to the hormonal 
influence of estrogen, estradiol, progestin--the treatments 
that are used for treating individuals with Alzheimer's 
disease, trying to protect, so it is a very active area of 
research. At Mayo, we have a group that is looking at women's 
issues in health, women's issues in Alzheimer's disease as 
well. I think it is going to play out more, hopefully, more 
productively in the next few years.
    Senator Warren. Thank you very much. That is really very 
helpful, Dr. Petersen, and reminds us that there may be whole 
dimensions of exploration here when we are looking at sex-
linked characteristics that may be very important.
    Senator Collins and I have been working on this issue 
together, and earlier this week we joined with our colleagues 
to introduce the Advancing NIH Strategic Planning and 
Representation in Medical Research Act. It is a little bit of a 
mouthful, but you get what it is about.
    The new bill would ensure that more women are included in 
clinical research and that detailed information about 
enrollment in trials by women and minorities be shared 
publically. Our bill would also help ensure that sex-specific 
data and analyses will actually be conducted and reported, and 
that sex is considered as a potentially important variable in 
pre-clinical studies, and just this morning, the Senate Health 
Committee reported that bill to the floor of the Senate, so we 
are starting to see some movement on this.
    Yet, there is still much work to do. Real progress on 
Alzheimer's and other brain-related diseases and injuries 
require more funding from NIH, and this is truly an area where 
we get what we pay for, and right now we are not investing 
enough to stop Alzheimer's. We must do better on this.
    Dr. Petersen. Thank you very much. Thank you.
    Senator Warren. Thank you. Thank you.
    I just do want to add one point on this, and that is to 
express my gratitude to Senator Collins for her leadership on 
the Advancing NIH Strategic Planning and Representation in 
Medical Research Act because this is an important step in 
making sure that women are full participants in medical 
research.
    Over time, this will make a huge difference in the lives of 
women around the country and around the world, and it has the 
potential to speed health breakthroughs for women who struggle 
with, or who are at risk for, Alzheimer's. It is an example of 
what the Senate can do with extraordinary leaders and when we 
try to work together on both sides of the aisle.
    I just want to say again thank you to all of you for the 
work that you do by coming here and pushing us, and thank you 
for your leadership. Thank you, Senator Collins.
    The Chairman. Thank you, Senator Warren.
    Senator Kaine.
    Senator Kaine. Thank you, Madam Chair, and thanks to all 
the witnesses.
    To the Virginians who are here, closer drive than Indiana, 
I will give you that, but I was so thrilled to meet with you 
earlier.
    In Virginia, there are 455,000 family caregivers who 
provide 519 million hours of care for individuals with 
Alzheimer's. My wife is one, a caregiver for a sibling who was 
diagnosed with early onset Alzheimer's at age 55, and I have a 
lot of questions from staffers that are kind of Senator 
questions, but I really just want to ask a family member 
question on research, Dr. Petersen. Senator Warren asked one 
that I was going to get into, the overwhelming predominance of 
diagnoses among women, but the other two I am interested in 
are:
    Early onset Alzheimer's, what is the current State of the 
research on whether it is the same or whether it is different 
and why it manifests earlier?
    Then the second question I would like you to address is it 
is very promising to know that you do not have to wait for an 
autopsy now to be able to determine in an asymptomatic person 
that they might have the conditions that would lead to 
Alzheimer's. How quickly could you see that technology moving 
so that there would really be a widely accessible test, and how 
early could people get that in their life so that they could 
get information about whether they might develop symptoms later 
on in their lives?
    Dr. Petersen. Two very important questions. Early onset 
Alzheimer's disease tends to be more genetically loaded. 
Doesn't mean that everybody with early onset has one of those 
autosomal dominant mutations, which means that if it is in your 
family you have a 50-50 chance of getting it; if you get the 
mutation, you get the disease. That is much more common on 
young-onset people--fortunately, relatively uncommon.
    Nevertheless, there are some very important 
investigations--one going on in St. Louis at Washington 
University, the DIAN Study, another out of Banner Health in 
Phoenix with a family down in Colombia in South America, 
looking at people who have those genetic mutations.
    Why they are very important is they are relatively pure 
expressions of the disease such that we can look at the biology 
of what happens in those brains, and most of those early onset 
genetic mutations are related to this amyloid protein, so 
hence, we think that this amyloid protein may be not the end-
all/be-all, but is critical in the pathway, so early onset 
disease is devastating to individuals and families, but we are 
making some progress in genetic trials as well in those 
individuals--so-called adaptive trial designs looking at new 
drugs in a short period of time in those families that express 
those early onset features.
    I think what we learn about early onset will clearly 
translate to the vast majority of the other 99 percent of late-
onset, but I think they are going to definitely be related. 
Whether they are exactly the same disease I think remains to be 
seen, but there are a lot of overlaps.
    The second issue with regard to biomarkers and trying to 
identify the disease early in the process. Critical for the 
field.
    I do not want to overState things, however, and say that, 
``Gee, if you are 68 years old, normal, have a positive amyloid 
imaging scan for amyloid brain, you are going to get 
Alzheimer's disease, clinically impaired, and blah, blah . . 
.'' Probably, but we do not know today, tomorrow, 5 years, 10 
years, or ever in your lifetime, so longitudinal observational 
studies are critical to answer that question, but along the 
lines of what about getting these early diagnostic scans 
covered, right now they are not covered. CMS has said, we are 
not going to cover amyloid scans. The third-party payers, the 
commercial payers out there, they will not go that way if CMS 
does not go that way, but CMS and the Alzheimer's Association 
have launched a large study called IDEAS, a $100 million study 
to look at the utility of amyloid imaging in clinical practice, 
so they are going to pay for some 18,000-18,500 amyloid scans 
in clinical practice across the country to determine the 
utility. Is it worthwhile to know this information on the 
outcome of this particular patient? Critical question.
    I applaud CMS and the Alzheimer's Association for going 
ahead with this because this is a vital issue for the field 
right now and we need to know that information, so proactively, 
I think the government is doing it.
    Senator Kaine. Keep up your good work, and we will follow 
that study very closely. Thank you.
    The Chairman. Thank you, Senator.
    Senator Blumenthal.
    Senator Blumenthal. Thank you, Madam Chairwoman, and thank 
you for having this hearing.
    Thank you to all the advocates and activists who are here 
today, particularly if you are from Connecticut. We have a very 
active contingent in Connecticut, and I am not going to 
embarrass you by asking you to stand, but I appreciate all your 
great work. Mr. Pierce, as someone who has dealt personally 
with these issues, what do you think is the single most 
important or maybe three most important things that we can do 
in Congress, at the Federal level?
    Mr. Pierce. Fund, fund, and fund.
    Senator Blumenthal. You know, in my profession--I am a 
lawyer.
    Mr. Pierce. Oh, okay.
    Senator Blumenthal. We are taught never to ask a question 
when you do not know what the witness is going to answer.
    If it is a friendly witness, and I anticipated that would 
be your answer, but I apologize for interrupting. Please go 
ahead.
    Mr. Pierce. Well, that is the essence of what we have bene 
saying for, oh, I do not know, 30 years. We know more and more, 
and we know more and more because of the research we have been 
able to do, and we have been able to take better care and have 
incredible ideas blossom because people are no longer living in 
ignorance because we have been able to spread the word, but 
there are still vast parts of this country where people do not 
know enough about this disease, where the stigma exists, and 
there are still vast areas of research that just are not being 
touched.
    Although, thank God we have more funding for research, we 
are also losing not only research but losing researchers. If 
there is no funding for research, then the kids coming out of 
medical school go where the money is, and they go into plastic 
surgery, which is fantastic, but it is not the kind of need 
that we are expressing here, so this is where all these funds--
they have multiple effects, and so I do not say it jokingly at 
all. It really is; that is where we find ourselves, that our 
job is to express the need and say this is where we are and how 
important it is, and that is the answer--is to fund it.
    Senator Blumenthal. Do you think the Federal Government 
should, in effect, fund research outside of its own facilities 
or organizations, and how tightly or specifically should 
restrictions be put on what the funding is used to do?
    Mr. Pierce. You know, all I can say--I am probably not 
qualified to answer that, first of all, but what I would say, 
based on my time on the council, is I understand that you guys 
cannot fund without metrics and without specifics, and that our 
job is and any researcher's job is to provide you with the 
information that you can make an informed decision and say 
there is a reasonable chance, but the one thing we do know is 
we do know what will happen if we do not fund research, so that 
is a definite.
    Senator Blumenthal. I would invite other members of the 
panel to answer those same questions.
    Dr. Petersen. I think I can contribute to what David is 
saying with regard to leveraging funding, so should the Federal 
Government fund areas outside? I think it is important for the 
Federal Government to think about options of leveraging funding 
against other sources, so if somebody comes in with a grant 
application saying if the Federal Government can fund $5 
million of this, I will raise $5 million or $10 million.
    Also, do this internationally. This is not a U.S.-specific 
disease process, and so in the National Plan we have specific 
metrics to actually look at our involvement internationally, so 
to the extent we can leverage our funding with funding from 
other countries I think would be mutually beneficial.
    Senator Blumenthal. Very good point.
    Let me ask another question, and this question too I think 
I know how you will answer, but I think it is a question that 
we need answered so that we can be better advocates for you in 
fighting for funds, funds, funds.
    Have you seen significant instances of overspending, 
imprudence, waste in the allocations of funding? Are there 
instances where stronger metrics or scrutiny are necessary in 
supervising these expenditures?
    Dr. Petersen. I mean, I can share a couple of thoughts on 
that.
    With the last several years with the very, very tight pay 
lines at NIH, only the very best research and the most sort of 
conservative research gets funded. Sort of the sure bets. If 
you are only funding 8 percent or 5 percent of all the 
applications, they better pay off, so if I am a funder, if I am 
at NIH or a review committee, I want to review and grade 
positively those projects that are going to pay off.
    What you are missing, though, are the long shots--the high 
risk, high payoff, but they are high risk, so a lot of those 
are going to fail, and they may be the young researchers as 
well, so the new kids who come in with a great idea about we 
might make inroads to this disease, but they go elsewhere or 
they do not get funded.
    I think by relaxing the pay line and clearly with the $350 
million that the National Institute on Aging, the pay line for 
grants in Alzheimer's disease have gone from 8 percent to 18 
percent, a doubling, so you are going to get more of these 
grant applications, I think, that have that little bit of risk 
around the edge but may be huge contributors to the field.
    I think that is the tradeoff we get with a tight funding 
line versus a relaxed funding line.
    Senator Blumenthal. I would just suggest amending your 
answer by substituting for the word ``risk'' maybe the word 
``courage'' or ``vision'' because the risk is simply failure, 
but failure is part of research. If it were easy to do the 
research without risk, without courage, without vision, then 
probably the research would not be necessary in the first 
place.
    I want to thank you for that answer. I will interpret it as 
an answer of ``no'' in response to my question that we are 
spending wisely and well, and we should simply do more of it. 
Thank you, and maybe I should amend my own comments. Instead of 
the word ``spending,'' say ``investing'' because it really is 
investment. Thank you.
    The Chairman. Thank you, Senator. Thank you.
    Before I give some closing comments, I want to turn to 
Senator McCaskill and Senator Tillis, who have been here 
throughout the entire hearing, to see if they have any closing 
comments that they would like to make.
    Senator McCaskill. I just think you cannot get so 
downtrodden that you do not see the progress, and I think it is 
important that all of you pat yourselves on the back because 
both the witnesses, who represent a variety of different 
perspectives when it comes to this problem, and then all of you 
out there that have decided to make this part of your life, you 
are making progress. We are making progress, and we will make 
you a deal. We will not quit if you will not quit.
    The Chairman. Thank you, Senator.
    Senator Tillis.
    Senator Tillis. Thanks again, Madam Chairwoman, for holding 
this committee hearing.
    Thank you all for being here. You know, when I was talking 
in my comments before I asked a question about where the head 
meets the heart, what I think is very important for people to 
understand is in doing a good thing for these victims we are 
going to save billions and billions of dollars, which as we 
proceed to a treatment and a cure for this disease will let us 
accelerate the pace for diseases that do not necessarily have 
as broad of an impact.
    Mr. Pierce, when you answered the question ``Fund, fund, 
fund,'' I think it is because we can save, save, save. We can 
save lives, we can save heartbreak, and we can save money. I 
cannot imagine any more compelling case for focusing on working 
on accelerating a cure and accelerating more sophisticated, 
broader-based options for caregivers.
    Mr. Petersen, the last thing I will leave you with is one 
thing that I would ask you to do. I want to continue to work 
with the Chairwoman and the members of this Committee to 
advocate for more funding.
    I would encourage your and your colleagues to go back and 
take a look at the environment that you operate within that has 
evolved over time, and maybe at a time there were good policies 
that were set forth by the Congress that no longer make sense 
or in combination with other decisions. You know that if there 
is any waste, it is as likely to be because of inefficiencies 
we have imposed on you as it is any sorts of variabilities that 
you have to deal with in research.
    I think it is very important to come before this 
Committee--and I often say this in other committees that I am 
in. Put a mirror where the witness stand is right now and make 
us reflect on decisions that we have made that are 
inefficiencies built into your processes at the expense of that 
money being freed up to accelerate a cure or better strategies 
for caregiving. You owe that to us to do that, and we need to 
be open to criticism and some opportunities to reform the 
environment that you operate in so that we make sure every 
possible dime can be spent to its best and highest use.
    I assume with that knowing glance there has got to be a few 
examples out there. I will not ask you to respond, but I would 
like to make sure that you know my office is wide open to 
looking for those opportunities to help us free up even 
resources that are already invested but that are not being 
invested for their most productive use.
    Thank you.
    The Chairman. Thank you very much, Senator.
    I want to thank our exceptional panel of witnesses today. 
You have deepened our understanding of the challenge that we 
face, and each of you presented exceptional testimony.
    When I look out at that sea of purple, to me, it represents 
progress, determination, and hope.
    When I was on my way to vote this morning, one of my 
colleagues on the subway asked me if I were wearing purple 
today because of Alzheimer's, and I told him that that was in 
fact the case, and as those of you who were here last year for 
our hearing, and the year before and the year before and the 
year before, may recognize, it is the same suit.
    I made a vow many years ago that I would always wear this 
suit when I presided over, or participated in, a hearing or 
major event involving Alzheimer's.
    Senator McCaskill. I was wondering about those big shoulder 
pads.
    The Chairman. Well, as my colleague has so tactfully 
pointed out----I really would like to give this suit to 
Goodwill, so I cannot retire this suit until we retire 
Alzheimer's.
    Thank you, so please be assured of our commitment. It was 
wonderful to have so many Senators taking time today to come by 
this hearing. I think that should encourage all of you, and I 
thank you all for your advocacy.
    To the panel, I will say that the hearing record will be 
open until Friday, April 15th, so you may receive some 
additional questions.
    Thank you so much for your participation. Safe travels to 
all the advocates who have come from around the country.
    This hearing is now adjourned.
    [Whereupon, at 4:11 p.m., the Committee was adjourned.]
    
=======================================================================


                                APPENDIX

=======================================================================

      
                      Prepared Witness Statements

=======================================================================

[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]

                               [all]