[Senate Hearing 114-867]
[From the U.S. Government Publishing Office]




                                                        S. Hrg. 114-867
 
                     THE FIGHT AGAINST ALZHEIMER'S
                      DISEASE: ARE WE ON TRACK TO
                          A TREATMENT BY 2025?

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

                                HEARING

                               BEFORE THE

                       SPECIAL COMMITTEE ON AGING

                          UNITED STATES SENATE

                    ONE HUNDRED FOURTEENTH CONGRESS


                             FIRST SESSION

                               __________

                             WASHINGTON, DC

                               __________

                             MARCH 25, 2015

                               __________

                           Serial No. 114-03

         Printed for the use of the Special Committee on Aging
         
         
         
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              U.S. GOVERNMENT PUBLISHING OFFICE 
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                       SPECIAL COMMITTEE ON AGING

                   SUSAN M. COLLINS, Maine, Chairman

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

Barbara ``B.'' Smith, Former Model, Restaurateur, Retailer, 
  Author, and Actor (accompanied by Husband, Dan Gasby)..........     6
Richard J. Hodes, M.D., Director, National Institute on Aging, 
  National Institutes of Health..................................     9
Ronald Petersen, M.D., Professor of Neurology; Cora Kanow 
  Professor of Alzheimer's Research; Director, Mayo Clinic 
  Alzheimer's Disease Research Center; and Director, Mayo Clinic 
  Study of Aging.................................................    11
Kimberly Stemley, Caregiver and Chief Financial Officer, RX 
  Outreach.......................................................    13
Heidi R. Weirman, M.D., Division Director of Geriatrics, Maine 
  Medical Center, and Medical Director, Elder Care Services, 
  MaineHealth....................................................    15

                                APPENDIX
                      Prepared Witness Statements

Barbara ``B.'' Smith, Former Model, Restaurateur, Retailer, 
  Author, and Actor, (accompanied by Husband, Dan Gasby)......... 39/40
Richard J. Hodes, M.D., Director, National Institute on Aging, 
  National Institutes of Health..................................    42
Ronald Petersen, M.D., Professor of Neurology; Cora Kanow 
  Professor of Alzheimer's Research; Director, Mayo Clinic 
  Alzheimer's Disease Research Center; and Director, Mayo Clinic 
  Study of Aging.................................................    53
Kimberly Stemley, Caregiver and Chief Financial Officer, RX 
  Outreach.......................................................    58
Heidi R. Weirman, M.D., Division Director of Geriatrics, Maine 
  Medical Center, and Medical Director, Elder Care Services, 
  MaineHealth....................................................    62

                       Statements for the Record

Richard J. Hodes, M.D., Taking a Critical Public Health Priority 
  (slides).......................................................    67


                     THE FIGHT AGAINST ALZHEIMER'S

                      DISEASE: ARE WE ON TRACK TO

                          A TREATMENT BY 2025?

                              ----------                              


                       WEDNESDAY, MARCH 25, 2015

                                       U.S. Senate,
                                Special Committee on Aging,
                                                    Washington, DC.
    The Committee met, pursuant to notice, at 2:18 p.m., Room 
106, Dirksen Senate Office Building, Hon. Susan M. Collins, 
Chairman of the Committee, presiding.
    Present: Senators Collins, Scott, Tillis, McCaskill, 
Nelson, Casey, Whitehouse, Blumenthal, Donnelly, Warren, and 
Kaine.

                 OPENING STATEMENT OF SENATOR 
                   SUSAN M. COLLINS, CHAIRMAN

    The Chairman. This hearing will come to order.
    Good afternoon. It is my pleasure to convene this 
afternoon's hearing to assess our Nation's progress in 
combating Alzheimer's disease since the enactment of the 
National Alzheimer's Project Act, which I co-authored with 
then-Senator Evan Bayh in 2011.
    I do not need to tell the people in this room what a 
devastating disease Alzheimer's is. It exacts a tremendous 
personal and economic toll on the individual, the family, and 
our society.
    In addition to the human suffering it causes, Alzheimer's 
costs the United States more than $226 billion a year, 
including $153 billion in costs to Medicare and Medicaid. These 
costs will skyrocket as the Baby Boom generation ages. Already 
our Nation's most costly disease, Alzheimer's is projected to 
cost more than $1.1 trillion in 2050 if nothing is done to 
change its current trajectory.
    Alzheimer's is also one of our Nation's leading causes of 
death. The CDC lists Alzheimer's as the sixth leading cause of 
death overall and the fifth leading cause of death for those 65 
and older. Other estimates put the mortality rate much higher, 
at number three, right behind cancer and heart disease.
    Moreover, and most frustrating, Alzheimer's is the only one 
of our Nation's deadliest diseases without an effective means 
of prevention, treatment, or cure.
    It is now estimated that nearly one in two of the Baby 
Boomers reaching age 85 will develop Alzheimer's. As a 
consequence, chances are that the members of my generation will 
either be spending our golden years with Alzheimer's or caring 
for someone who has it.
    In many ways, Alzheimer's has become the defining disease 
of this generation. If we are to prevent Alzheimer's from 
becoming the defining disease of the next generation, it is 
imperative that we dramatically increase our investment in 
Alzheimer's research.
    Just take a look at this chart. At a time when the United 
States is spending an astonishing $226 billion a year to care 
for people with Alzheimer's, we are spending less than 3/10ths 
of one percent of that amount, less than $600 million a year, 
on research.
    Believe it or not, that is an increase that many of us have 
worked for.
    You can barely see the expenditure level on that chart.
    Alzheimer's receives funding that is clearly 
disproportionately low compared to its human and economic toll.
    Look at the second chart. We currently spend $5.4 billion a 
year for cancer research, $3 billion a year for research on 
HIV/AIDS, and $2 billion for cardiovascular research--all 
investments that have paid dividends.
    These investments in research for other diseases have 
yielded tremendous results. Patients have access to new 
treatments. Death rates for some diseases are decreasing.
    Yet, at the same time, mortality due to Alzheimer's is 
escalating dramatically. Surely, we can do more for Alzheimer's 
and other diseases of dementia given their tremendous human and 
economic price.
    Fortunately, there is promising research that holds hope 
for Alzheimer's patients and their families. The research 
community is poised to make important advances through clinical 
trials and investigating new therapeutic targets, but adequate 
funding is critical to advance this research.
    The National Plan to Address Alzheimer's Disease has as its 
primary goal to prevent and effectively treat Alzheimer's 
disease by 2025.
    To meet that goal, the chairman of the advisory
    Committee on Alzheimer's Research Care and Services, Dr. 
Ron Petersen, whom we will hear from shortly, told our 
Committee last Congress that we will need to devote at least $2 
billion a year to Alzheimer's research.
    Well, at first blush, that may seem like a lot of money, 
but when you compare it to that $226 billion that we are 
spending caring for people with Alzheimer's, it is less than 
one percent, and that is the context that we need to put it in.
    That is why I have introduced a resolution, with several of 
my colleagues, stating that the Senate will strive to double 
the amount of funding that our country spends on Alzheimer's in 
Fiscal Year 2016 and develop a plan to meet the target of $2 
billion over the next five years.
    This afternoon, or perhaps tomorrow--the budget is on the 
floor today--I also will be offering an amendment to the 
budget, which I am pleased to say is co-sponsored by my ranking 
member, Senator McCaskill, as well as Senator Warner, Senator 
Toomey, and Senator Manchin, and we will also be calling on the 
budget to reflect that kind of investment.
    This is an investment that we simply must make to alleviate 
suffering and to prevent our health care programs from going 
bankrupt.
    I want to acknowledge all of the advocates who are here 
today from all over the country. We need your help. We need you 
to educate Members of Congress, and we hope that your presence 
today will be a powerful statement to all of our colleagues 
that they, too, need to help us solve this devastating disease.
    Senator McCaskill.

                 OPENING STATEMENT OF SENATOR 
                CLAIRE McCASKILL, RANKING MEMBER

    Senator McCaskill. Thank you.
    I want to thank the chairman for her commitment to this 
issue. I think it speaks volumes to the people in this room 
that the chairman has scheduled this hearing so early in her 
tenure as the chair of this Committee. That should be a signal 
to you that she is committed.
    I can assure her and you that I, too, am committed to the 
issues that she has eloquently outlined in her opening 
statement. I think that with the chairman as an advocate on 
your behalf we are in a very good place.
    I also want to thank all of you for being here today, from 
all across the country. Your spirit is inspiring. You have 
faced enormous personal challenges, years of frustration, pain, 
sorrow, moments of hopelessness, and yet, you find the strength 
to come here from all over the country and make your voices be 
heard.
    It is democracy at its finest hour as far as I am 
concerned.
    I look forward to hearing the testimony today from a member 
of the witness panel that is from the Missouri delegation here 
in Washington today, Kim Stemley. I will have an opportunity to 
introduce her more thoroughly in a few moments, but she is here 
as a caregiver, and her experience in navigating the medical, 
financial, and housing systems I think is probably 
representative of many of you in this room.
    I look forward to hearing her testimony and seeing what we 
can do specifically to help those who are helping care for 
those with this serious disease.
    At one point, many people believed that Alzheimer's disease 
was a normal part of the aging process and that treatment 
options were either hopeless or unnecessary. We now know today 
that is just flat wrong.
    If we make the investments now, we can, in fact, make 
treatment effective, and we can make those treatments available 
to millions of Americans and, in fact, citizens of the world.
    Effective treatments are necessary to alleviate the 
tremendous human, economic, and medical that this disease poses 
on our Nation's families. We need to do something soon because 
this is a crisis.
    The cost for Alzheimer's patients is set to reach $1 
trillion--over $1 trillion in just 2050.
    Just think about that. A trillion dollars. That is not a 
sustainable cost for individuals, families, or our Federal 
budget.
    Family caregivers are the unsung heroes of the Alzheimer's 
epidemic. They provide the largest portion of care for 
individuals with the disease. Caregivers typically experience 
more stress, anxiety, and lost productivity as a result of 
their increased responsibilities.
    While family caregivers provide needed support for their 
loved ones for as long as they can, many patients in the later 
stages of the disease require round-the-clock care and are 
moved to nursing homes.
    According to the CDC, nearly half of all nursing home 
residences in the United States have residents with Alzheimer's 
disease.
    With few long-term care financing options, many families--
in fact, probably most families--depend on the Medicaid program 
for their nursing home funds. It is estimated that 28 percent 
of the Medicaid budget is spent on long-term care services, 
much of that for Alzheimer's patients.
    I know that Ms. Stemley can speak of some of the challenges 
of accessing Medicare and help for her mom.
    By the way, her mom worked hard all of her life and retired 
with a pension, but that was not enough to cover the high cost 
of nursing home care.
    It is important that we are talking about these issues this 
week because this is the week we are voting on the budget.
    I am worried for our country and for families like Ms. 
Stemley's because the budget we are currently debating does 
massive cuts to Medicaid. Nursing home care and other health 
care services for seniors and disabled would be slashed by $5.4 
billion in Missouri alone under the budget that we are 
currently debating. These are middle-class families that would 
be devastated by these cuts.
    I also want to echo the statements of the chairman about 
research.
    Government investment in medical research has allowed our 
Nation to be a beacon to the world for hope, for medical 
advancement, for being the country that is looked to, and that 
adds to our national security because we are seen as such a 
leader in the world on medical research.
    Funding the National Institutes of Health has flattened and 
suffered over the previous years. I am hopeful that the 
amendment that I am co-sponsoring with the chairman will be a 
moment of bipartisan agreement that we cannot continue to shirk 
our responsibility in the United States to advancing medical 
research. There is no area that is more deserving of additional 
dollars for medical research than Alzheimer's.
    All that said, those are problems facing families once they 
have learned of the diagnosis.
    Yesterday, the Alzheimer's Association released their 2015 
Facts and Figures Report that found that about half of all 
people with Alzheimer's disease that are caregivers are not 
even aware of their diagnoses.
    That is incredibly troubling. We cannot go back to the old 
days when people were not properly informed of their diagnosis 
in a misguided attempt to spare them the truth.
    Not only are many individuals not being alerted of their 
diagnoses, but many believe that the mortality rate for 
Alzheimer's patients is much higher than projected. A study 
done by researchers at Rush University Medical Center found 
that Alzheimer's is now likely the third leading cause of death 
in the U.S., following closely behind cancer and heart disease.
    We need to tackle this crisis head-on and provide families, 
such as yours, with as much support as we can.
    I look forward to hearing the testimony from our panel of 
witnesses about how we can confront the looming challenges and 
plan for reaching treatment by 2025.
    Thank you again for your leadership, Chairman Collins.
    I also want to thank all of you for being here today.
    The Chairman. Thank you very much, Senator McCaskill.
    I should correct myself. Senator Moran is also a co-sponsor 
of the amendment that we will be offering to the budget. For 
those of you from Kansas out there, I just wanted to make sure 
I corrected the record.
    Senator Blumenthal. Madam Chair, may I be added as a co-
sponsor?
    The Chairman. Absolutely. I would be delighted.
    I want to also say that I am so glad that Senator Tillis 
from North Carolina, Senator Blumenthal from Connecticut, and 
Senator Donnelly from Indiana have joined us today. I know they 
care deeply about this issue.
    We now turn to the testimony of our panel.
    I am pleased that joining us today on the witness panel are 
Barbara, better known as ``B.,'' Smith and her husband Dan 
Gasby.
    B. is a well-known supermodel who has graced the cover of 
fashion magazines. She is also an accomplished restaurateur, 
for those of us who have eaten at her restaurant at Union 
Station know that, a retailer, actor, and author, but nowhere 
are her grace, beauty, and courage more evident than in her 
fight against early onset Alzheimer's disease.
    Dan Gasby is an entrepreneur, television producer, and 
entertainment executive, and has stood by his wife's side every 
step of the way.
    By sharing their story, Ms. Smith and her husband are 
helping to make a real difference.
    We thank you.
    Next, we will hear from Dr. Richard Hodes, who is the 
director of the National Institute on Aging at the National 
Institutes of Health. Dr. Hodes also represents NIH on the HHS 
Secretary's Federal Advisory Council on Alzheimer's Disease, 
Research, Cure, and Services. He also coordinates the NIH 
research efforts under the National Plan to Address 
Alzheimer's.
    We will then hear from Dr. Ronald Petersen, whom I 
mentioned previously. He is the director of the Mayo Clinic 
Alzheimer's Disease Research Center and the Mayo Clinic Study 
of Aging. In 2011, he was appointed to serve as chair of the 
advisory Committee.
    Kimberly Stemley has already been introduced by our ranking 
member. She is from St. Louis and will be talking about the 
challenges that our Nation's many caregivers of Alzheimer's 
patients face every day.
    We welcome you as well.
    Finally, it is a great pleasure to welcome to the 
Committee, Dr. Heidi Weirman, who is with us here today. For 
more than ten years, she has served as a geriatric physician at 
Maine Medical Center in Portland, Maine, and she specialized in 
the challenges that both physicians and caregivers face when 
caring for Alzheimer's patients.
    Again, it is truly touching to see the sea of purple 
gathered in the hearing room today, but it is also a stark 
reminder of how many individuals' and families' lives are 
affected by Alzheimer's. I want to thank the advocates who have 
traveled to Washington.
    We look forward to hearing from the testimony, and we will 
start with B. Smith.

        STATEMENT OF BARBARA ``B.'' SMITH, FORMER MODEL,

           RESTAURATEUR, RETAILER, AUTHOR, AND ACTOR,

              (ACCOMPANIED BY HUSBAND, DAN GASBY)

    Mr. Gasby. Go ahead.
    Ms. Smith. Okay. Thank you all for having us here today. I 
have not been spending a lot of time down here, but I am 
getting back on the saddle these days.
    It has been a tough time for me because I do have early 
onset Alzheimer's disease, and I am here because I want to make 
a difference.
    I am here because I do not want anybody else to have to go 
through this.
    I am here to ask you to make a difference not just for the 
five million Americans who have Alzheimer's, and their 
caregivers, but for the future generations who will face that.
    This has been something that is very new to me because I 
have been so healthy for such a long time that I have never had 
anything like this, but what I am going to do is I am going to 
fight. I am going to do exactly what I can to be the best and 
to be better than the other person that I really even was.
    There are lots and lots of people out there who are 
probably feeling the way I am feeling, like this should never 
have happened to me, that type of feeling. I am sure that there 
are many people, but there are many problems out here also.
    I feel that I am ready to work. I am ready to do what I 
have to do to be the best that I can be and to help as many 
people that I can help.
    If I have to tell somebody that they should not do 
something because, I will do it, and they will tell me I want 
to do it or I do not want to do it, but it is important to me; 
it has always been. Health and wellness has been something that 
has been a big part of my life and a part of helping young 
people.
    Today I am excited to be here, I am happy to be here, and I 
thank you very much.
    I have got a lot to do in my future, and I am going to do 
it, and I am going to do it the best way I can.
    If I can help people and if they can help me and we can do 
it together, even that is fine, but however we do it, we just 
have to do it.
    The Chairman. Thank you so much.
    Mr. Gasby.
    Mr. Gasby. Thank you, Chairman Collins--I want to thank you 
for having me--Ranking Member McCaskill, and to the members of 
the Committee.
    You know, I love my country. I am proud to be an American. 
I am a kid from Brooklyn, and I never thought I would have an 
opportunity to try to make a difference.
    This is the one time that I know that I can make a 
difference because I have seen what my wife has gone through. I 
have seen a woman who virtually could do everything, who could 
sing, who could dance, who could look at food and taste it and 
then cook it exactly the way it could be in a cookbook, who did 
a television show, who did 100 radio and television 
commercials, who basically always gave back, and now has to 
wait and help--wait for people to help her.
    You know, I am reminded of a song that, of all people, Jay-
Z and Kanye West wrote, and there is a lyric in there. It is 
called ``The pain ain't cheap.'' The pain ain't cheap for the 
five million Americans who are suffering with Alzheimer's 
disease.
    The pain is not cheap for the 15 million caregivers that 
each and every day, every waking hour, have to struggle as we 
do, as a couple. My best friend, watching her get up, try to do 
things, look me in the eye and say, ``Honey, I am broken.''
    When you see someone that you know knows that they cannot 
do what their body and their mind has told them for 55, 60 
years, you realize that you have got to try to step out, step 
up, and make a difference.
    I am here to tell you that the pain is not cheap because if 
we do not do something now the price we are going to pay 10, 15 
years down the road, by 2050, when it is estimated that 15 
million people will have Alzheimer's and, as you have so 
accurately said, the cost will be over a trillion dollars.
    You know, the greatest resource that we have in our country 
is our intellectual ability.
    The greatest resource that we have in our country is our 
two-party system and a democracy that works.
    The greatest resource we have is what we learn from 
generation to generation that we pass down.
    Well, when you have Alzheimer's, what you have is people 
who lose that perspective--people in their 40's now, 50's, 60's 
and beyond. You lose the ability to give people behind them the 
sense of accomplishment, the sense of understanding, and the 
sense of hope.
    You know, we have a modern-day social tsunami. This is what 
Alzheimer's is.
    When you look at it, when you look at what my wife has gone 
through, when you look at what is ravaging the African-American 
community, I am twice as likely to have Alzheimer's as my 
Caucasian counterpart.
    When you look at the fact that within that community, my 
community, we are getting tested and treated and found at a 
later stage, so the chances of being able to retard or handle 
the situation is going to be more costly than ever.
    You realize that we have got to stop it right now.
    Now we have invested millions of dollars, billions of 
dollars, as you said earlier, in heart disease and cancer, but 
we pay a pittance to Alzheimer's disease.
    We know that by using a PET scan we can determine that 
there is amyloid-beta plaque in the brain, and if we find out 
that that has happened, we can begin the process of taking care 
of ourselves through diet, through exercise through holistic 
practices, and through that we may be able to ward off or slow 
down so that we can allow what government funding and the 
intellectual capacity that we have in this country to develop 
the means and the methods to make a difference.
    I am here today because I believe in America. You know, 30 
years ago, if you walked around with a telephone, you had it on 
your back, and today, when you walk around, it is in your hand.
    I know that we can take the gene code and break it down. It 
used to take forever to even figure out we had genes, and now 
we understand the differences in different population groups.
    I know that drug trials make a difference in different 
populations. That will help the efficacy of drug testing and 
treatment and bringing positive, powerful new medicines to 
market.
    I know that we have, within the breadth and depth of this 
great country, the people who are committed.
    Last night, I was at the Alzheimer's dinner, and I saw 
1,000 people-plus who all know that the pain from Alzheimer's 
is not cheap.
    What I saw there last night was a team. I saw a group of 
people from the deep South to the far West, from the heartland 
of America to New England, all looking each other in the eyes 
and saying, you know what? We are at the tipping point, and we 
are going to push this thing over.
    I come here today to tell you I do not believe in big 
government. I believe in good government, and I know that what 
is happening in this Committee is going to change the face of 
the Alzheimer's community.
    Last night, I sat a table with 10 other people, and there 
was a young boy there. His name was Tyler.
    While we were talking about all the things that were going 
on and we were listening to Lisa Genovo, who wrote the book for 
``Still Alice,'' I was looking at him.
    The only thing I could think of was, you know, here is a 12 
or 13-year-old that if I said to him right now, what is a 
cassette deck, he would go, huh?
    If I said to him, what is an 8-track, he would go, what?
    Well, I want that young man, that young boy, Tyler, when 
his kids are his age, he can look back and say, I remember when 
we conquered Alzheimer's, and the kids are going to say, what? 
Huh?
    We have it within our capacity here in this country to make 
that difference, and I want to be a part of it, not just for 
her but for the future Tylers in this country.
    Thank you.
    The Chairman. Thank you both for such eloquent testimony.
    Thank you so much.
    Dr. Hodes.

              STATEMENT OF RICHARD J. HODES, M.D.,

             DIRECTOR, NATIONAL INSTITUTE ON AGING,

                 NATIONAL INSTITUTES OF HEALTH

    Dr. Hodes. Thank you, Chairman Collins and Ranking Member 
McCaskill, and members of the Committee. Let me begin by 
thanking you for the opportunity to be here and for the support 
that you, Congress, and the administration have provided to NIH 
and for the research, and to thank everyone here in this room 
for the opportunity to be a part of what we are doing.
    I would like to spend the next few minutes just giving some 
of the examples of the State of research in Alzheimer's 
disease, the State which gives us great hope, hope greater than 
ever before, that the progress we are seeing now will lead to 
improvements in, ultimately, the ability to treat, cure, and 
prevent Alzheimer's disease.
    If we can move to the next slide.
    This probably needs no elaboration, as referred to by 
Chairman Collins, but is an illustration of where we stand now 
in terms of the number of people affected with Alzheimer's 
disease, some 5.1, 5.2 million, and the projection for its 
increase two to three fold in the next decades if we do not 
change that course, and to the right, in the bars illustrated, 
are the estimates of cost already showing Alzheimer's disease 
to be the most expensive disease and condition we face in this 
country, with projects of it again increasing severalfold as 
the population at risk increases.
    There is reason to think, to hope, and there is an 
imperative that we succeed in changing this trajectory.
    In the next slide, some examples of what were alluded to. 
Dan Gasby referred to imaging as an indication of the ways in 
which we gain insight into what is going on with Alzheimer's 
disease, not possible just a few years ago.
    These are scans that look at amyloid a-beta and tau, two of 
the lesions that correspond to the plaques and tangles that 
Professor Alzheimer saw in 1906, that until recently were 
identifiable really only at autopsy, and this illustrates our 
ability now to image these, and you see the slides shown here--
cognitively normal individuals with relatively little of these 
deposits.
    The next slide shows some contrast--an individual with 
Alzheimer's, affected with dementia and cognitive change, and 
you can see by the color codes and intensity the increase in 
both plaques and tangles that are formed in those brains.
    The situation is even more complex and challenging than 
that. If we look at the next slide, here is another individual, 
cognitively normal, who actually has accumulations of amyloid 
and tau in the brain.
    We are gaining insights only now into our ability to 
recognize these as potentially very early stages of disease, 
before symptoms, potentially before there is irreversible 
damage done, a stage at which we can begin to intervene and 
attempt to prevent progression and appearance of symptoms, so 
remember this and then turn to the next slide, which is another 
illustration of progress made.
    I apologize for the difficulty in reading it, but it is a 
time course of genetic discoveries, and it shows in the early 
1990's we discovered those genes that were responsible for very 
rare, but tragic, familial forms of Alzheimer's disease, and 
then there was a period of about fifteen years when we did not 
discover any other new genes until the modern technologies of 
sequencing and GWAS gave us a proliferation of the genes that 
we understand, but remember those genes that cause Alzheimer's 
in families and then turn to the next slide.
    We are able to identify in these rare and tragic families, 
such as the one illustrated in this study, a family in the 
South American country of Colombia, by imaging, identifying 
individuals years and decades before we know they are going to 
have the disease changes which occur in the brain, so on the 
bottom left is the relatively normal scan of individuals in 
their 20's, whether they have this Alzheimer's-causing gene or 
not.
    To the right, the individuals who did not inherit the gene 
from their parents look relatively normal in the brain whereas, 
to the bottom right, those individuals who are gene carriers 
are already showing signs of the disease decades before 
symptoms.
    It is exactly in these individuals that we are now 
beginning to do studies, prevention studies, by intervening 
with treatments before damage and loss of cognitive functions 
occur, with a new generation of hope that we can make a 
difference with this kind of treatment.
    The next slide.
    Just to emphasize that these studies are being done in 
great and novel partnerships with the public and private 
sector, and investing to the common goals of identifying new 
targets for Alzheimer's disease, and then studies to attempt 
treatments and conditions where we can monitor the changes in 
biomarkers and tell earlier in the course of these studies 
whether there is success or not success in these interventions.
    The next slide.
    Then to turn to another important aspect, even as we search 
for cures and early insights into the molecular diagnoses, we 
recognize the importance of doing all that we can to take care 
of individuals who are now living with disease and those who 
care for them.
    This is an example of a caregiver study, REACH, a study 
designed to look at interventions that would make life better 
for people with Alzheimer's disease and those who care for 
them.
    The study, as any other clinical trial, was judged by its 
success. It was enormously successful and was able to allow 
people to live at home longer, protect the health and prevent 
against the increased risk of disease in caregivers that is so 
common, and is now being disseminated as illustrated here, 
through the VA and through the Administration on Aging 
nationwide, in an effort to decrease the burden for those who 
take on the most important job of caring for those living with 
Alzheimer's disease.
    The next slide.
    Finally, just one to illustrate that under the aegis of the 
National Plan, which has provided a new and intensified focus 
for disease, we have a spectrum of commitment illustrated here, 
the goal of curing and preventing Alzheimer's disease by 2025, 
along with equally important goals having to do with care, 
enhancing public awareness, and tracking progress through time.
    I thank you for an opportunity to give you this brief 
summary of some of the reasons for real excitement and optimism 
and look forward to addressing any questions you may have.
    Thank you.
    The Chairman. Thank you very much.
    Dr. Petersen, welcome back.

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

         NEUROLOGY; CORA KANOW PROFESSOR OF ALZHEIMER'S

          RESEARCH; DIRECTOR, MAYO CLINIC ALZHEIMER'S

             DISEASE RESEARCH CENTER; AND DIRECTOR,

                   MAYO CLINIC STUDY OF AGING

    Dr. Petersen. Thank you, Chairman.
    Good afternoon, Chairman Collins, Ranking Member McCaskill, 
and distinguished members of the Senate Special
    Committee on Aging.
    I would like to thank the Committee for the opportunity to 
discuss the importance of Alzheimer's disease for this country 
and, also, commend Senators Collins and Klobuchar for 
introducing the resolution to double the funding for 
Alzheimer's disease research in 2016 and to achieve the goal of 
increasing the annual research budget to $2 billion in five 
years.
    As you know, in 2010 Congress unanimously passed and the 
President signed into law in 2011, the National Alzheimer's 
Project Act requiring the Secretary of Health and Human 
Services to generate the first plan for this country to address 
Alzheimer's disease.
    The advisory council has just completed its recommendations 
for the 2015 plan in January.
    The primary goal of the plan, as Dr. Hodes has just 
mentioned, is to effectively treat and prevent Alzheimer's 
disease by 2025. This goal is but a short 10 years away.
    An essential feature of the recommendation submitted to the 
Secretary and to Congress includes the recommendation that the 
Federal Government spend at least $2 billion a year in research 
on Alzheimer's disease.
    As Chairman Collins has indicated, this figure pales in 
comparison to what we spend on cancer, HIV/AIDS, and 
cardiovascular disease, and yet, in those diseases there has 
been significant progress made with regard to reducing the 
number of deaths per year.
    Yet, the annual death rate for Alzheimer's disease is 
escalating. Again, Alzheimer's disease is an incurable disorder 
with no survivors.
    In 2013, the United Kingdom Prime Minister, David Cameron, 
used the final event of the G-8 presidency to host a summit on 
dementia. In preparation for that meeting, Professor Nick Fox 
of University College-London, and I wrote a commentary for the 
journal, ``The Lancet,'' suggesting that member countries 
consider spending one percent of their annual care budget on 
research.
    In 2014, the United States spent $226 billion caring for 
people with Alzheimer's disease, and if we were to spend one 
percent of that figure on research, we would reach the $2 
billion figure recommended by the advisory council and Senator 
Collins.
    Last week in Geneva, Switzerland, the World Health 
Organization sponsored the first Ministerial Conference on 
Global Action Against Dementia. At the meeting, I presented 
some figures similar to what Dr. Hodes has just shown as to 
what the current numbers of individuals with Alzheimer's 
disease are in this country and what they are projected to be 
by 2050.
    Then we superimposed the scenario of: What if we delayed 
the onset of the disease by 5 years? How would those numbers be 
impacted?
    Another scenario would be: What if we were able to slow the 
progression of the disease? We might have the same number of 
individuals but more people with a lesser degree of impairment.
    Or, preferably, doing both of those.
    In a recent report from the Alzheimer's Association, it is 
projected that if a treatment were to be introduced by 2025 
that would delay the onset of Alzheimer's disease by five 
years, that treatment would reduce the number of individuals 
affected by the disease by 5.7 million by 2050 and save all the 
payers, including Medicare, Medicaid, and families, more than 
$220 billion within the first five years.
    As recommended by the advisory council, if the government 
were to invest $2 billion per year, the country would recoup 
this investment within the first three years after a treatment 
became available.
    All of the economic models converge on this point. They 
indicate that the savings to the Federal Government would more 
than capture the increased investment in research in a 
relatively short period of time with an effective therapy.
    I would like to commend my colleagues at the Department of 
Health and Human Services for their work toward enacting the 
National Alzheimer's Plan thus far. Great strides have been 
accomplished in coordinating Federal agencies and improving 
Federal capabilities with respect to Alzheimer's disease. 
However, a great deal of work needs to be accomplished since we 
are not close to our goal of effectively treating and 
preventing the disease by 2025.
    I can say with confidence that the research community is 
poised to make a significant contribution toward the goal if 
adequate funding were available. As outlined by Dr. Hodes of 
the National Institute on Aging, he and his staff have 
established milestones for the execution of the plan and now, 
with the passage of the Alzheimer's Accountability Act, are 
working diligently to prepare a professional judgment budget to 
submit to Congress, outlining expenditures necessary to 
accomplish the goals set forth in the National Plan.
    We cannot wait until there is a more convenient time to 
increase funding for this disease. Projections indicate that 
Alzheimer's disease will bankrupt the health care system as we 
know it today. We simply cannot afford to spend the 
aforementioned over $1 trillion a year, as is projected in 
2050, to care for individuals with Alzheimer's disease.
    The impact on individuals and families is enormous. The 
cost to society is unsustainable.
    We appreciate the difficult constraints under which the 
Federal Government is currently operating, but our patience and 
families cannot wait. With 10,000 Baby Boomers turning 65 on a 
daily basis, this problem is not going to be resolved by 
itself.
    We are all poised to make a difference given the 
opportunity, and considering there was a recent report of a new 
and promising drug made at an international meeting last week 
in Nice, France, we are encouraged that something is in the 
pipeline.
    Ultimately, it will be up to the individuals such as those 
on this Committee to make very difficult decisions regarding 
funding for Alzheimer's disease and related disorders going 
forward.
    We call upon Congress to make bold decisions to alter the 
course of this disease now so that it is not a burden to the 
next generation and providing them with an intractable 
situation. The National Plan to Address Alzheimer's Disease has 
established a blueprint that would make this possible, and we 
need your support.
    I appreciate the opportunity to address the Committee. 
Thank you.
    The Chairman. Thank you, Doctor.
    Ms. Stemley.

           STATEMENT OF KIMBERLY STEMLEY, CAREGIVER 
            AND CHIEF FINANCIAL OFFICER, RX OUTREACH

    Ms. Stemley. Good afternoon, Chairman Collins, Ranking 
Member McCaskill, and members of the Committee.
    On behalf of the 15.7 million caregivers for individuals 
living with Alzheimer's disease and other dementias, thank you 
for the opportunity to testify before you today.
    Alzheimer's is a devastating, progressive and, ultimately, 
fatal disease. More than five million Americans are currently 
living with Alzheimer's disease or another dementia.
    The men and women living with Alzheimer's are your friends, 
your neighbors. Some may even be your family members. They are 
business leaders, school teachers, store clerks, and 
construction workers. They are both Republican and Democrat, 
and my beloved mother, Dorothy Stemley, is one of them.
    I am honored here today to share our story and discuss 
issues facing people with Alzheimer's and their caregivers. I 
find the more vocal I am about how this disease has impacted my 
family the more I hear from other people who have gone through, 
or are going through, similar situations.
    Today, my mother is living in a skilled nursing facility in 
Missouri, and I am confident that she is receiving appropriate 
care and she is in the right setting. However, getting to this 
point was a challenge, and there are many families out there 
who never get the care and support they desperately need to 
face this terrible disease.
    For several years, my mother and I were in denial about the 
changes in her behavior. I did a great job rationalizing 
unusual incidents, and she did an even better job hiding 
others.
    All the rationalizing and denial came to an abrupt halt the 
morning I received a call from a stranger telling me my mother 
was in the middle of Martin Luther King, Jr. Drive in St. 
Louis. Alone and confused, she had slept all night in her car 
on the side of the street. My mother was a long way from home, 
and that day marked the beginning of our journey with 
Alzheimer's.
    My mother's diagnosis was the result of three different 
evaluations. Neurologists performed a number of blood and 
cognitive tests on her, ultimately concluding that it was, in 
fact, Alzheimer's disease.
    There I was, an only child, caring for my single mother who 
had Alzheimer's. I knew then that the world we had shared was 
no longer, and at the age of thirty I was thrown into a world 
that was completely foreign to me, a world of Alzheimer's 
disease, and I felt completely lost.
    After her diagnosis, we did not receive much information 
from her doctors about the disease or much advice on what to do 
next. A friend of mine recommended looking online for help.
    I found the Alzheimer's Association, which was the first 
time light began to shine through the darkness. I was able to 
learn about the disease, what the diagnosis meant for both 
myself and my mother, as well as what our next steps should be 
in considering options for her care.
    I also learned how to cope with all the emotions I was 
feeling throughout the whole process. This is important because 
the stress of being a caregiver was only compounded by the 
stress that I faced at work.
    My physical health started to suffer. I would wake up in 
the middle of the night with back spasms, and my back pain was 
so severe that my own doctor recommended I make a lifestyle 
change just to maintain my own health. I did, and now I 
exercise three times a week, and I have been eating a healthier 
diet.
    However, the emotional part of it continues to be very 
difficult for me, and when I see my mother now it feels like 
day one every single time.
    At the time she was diagnosed, my mother was living alone. 
She had exhibited other warning signs that raised concerns 
about her safety. For example, my mother started a fire in her 
condo one day, and although no one was hurt I knew then it was 
time to consider other living arrangements for her.
    We moved her into a senior's independent living apartment 
which provided her with the security, hospitality, and social 
outlet that she needed. She was able to live there on her own 
for another four years until her memory loss had progressed to 
the point where additional care and attention were needed.
    The next step was my own personal nightmare coming true, 
moving my mother to the skilled nursing facility where she 
currently lives today.
    Although my mother worked for thirty years and retired with 
a healthy pension, the high cost of long-term exhausted her 
funds. We needed the Medicaid program to afford the long-term 
care, and I am very grateful for the assistance.
    Based on my experience, I know I am not the only one who 
has had difficulty getting help after learning about an 
Alzheimer's diagnosis. I have experienced firsthand the gaps in 
our health care system when it comes to dealing with this 
disease.
    Far too many physicians are not familiar with how to 
properly advise patients and their caregivers after an 
Alzheimer's diagnosis. It took a friend's advice, not my 
mother's health care provider, and finding the Alzheimer's 
Association for us to even get basic information about what to 
expect next.
    No one could ever feel as lost, or no one should ever feel 
as lost, as I felt back then.
    There is no treatment for Alzheimer's disease. However, 
there are many things that can be done to improve a family's 
ability to cope with the disease, especially immediately 
following a diagnosis.
    This is why the HOPE for Alzheimer's Act, which was 
reintroduced this week, is critically needed. The HOPE Act 
would ensure that families like mine, who are facing an 
Alzheimer's diagnosis are provided with care planning services 
to help guide them through their next steps.
    To some extent, I feel blessed. I eventually found the 
resources and the support I needed to manage my mother's 
condition and my own well-being.
    If HOPE had been around at the time of my mother's 
diagnosis, I am certain that I would have felt much less alone 
in this fight in the beginning.
    Until a cure is found, we must work to support the family, 
the caregivers, and people with the disease immediately 
following the diagnosis. We need care; we need help, which is 
exactly what the HOPE for Alzheimer's Act would provide.
    I have also had the opportunity to speak with many 
researchers about the current progress that has been made 
toward the development of a cure for Alzheimer's. I am 
disheartened because I realize that despite progress we still 
have a very long road to walk.
    Seeing advancements in other areas as the result of strong 
Federal investments and research makes me think of the 
opportunity that exists for scientists to develop a truly 
groundbreaking treatment for this disease, one that could spare 
millions of families the same heartache I feel every time I see 
my mother.
    I always say that Alzheimer's disease is one of the worst 
out there.
    I implore you and all of your congressional colleagues to 
work to provide additional funding for Alzheimer's research. 
Research is the only way we can truly create a world without 
Alzheimer's.
    I thank you for the opportunity to testify today. I 
appreciate the support of the Committee and its focus on 
improving the lives of those affected by Alzheimer's disease.
    If there is one thing I would ask that you would take away 
from my testimony, it would be that Alzheimer's disease not 
only impacts the diagnosed person but those that love them very 
dearly.
    Thank you so much.
    The Chairman. Thank you very much for giving us your 
perspective.
    Dr. Weirman.

         STATEMENT OF HEIDI R. WEIRMAN, M.D., DIVISION

             DIRECTOR OF GERIATRICS, MAINE MEDICAL

              CENTER, AND MEDICAL DIRECTOR, ELDER

                   CARE SERVICES, MAINEHEALTH

    Dr. Weirman. Good afternoon, Chairman Collins, Ranking 
Member McCaskill, and the distinguished members of the
    Senate Special Committee on Aging. I am very appreciative 
of this opportunity to be here with you for me to share my 
experiences treating individuals with dementia and working with 
their caregivers.
    I am a geriatrician in Maine with roots in Oregon, and 
clinically, my work is focused on dementia. I evaluate 
individuals and work with their families at our outpatient 
geriatric center. I also spend time in the hospital, working 
with programs to prevent complications for older adults who are 
hospitalized.
    As the medical director for the hospital Elder Life 
Program, I work to prevent delirium, which is particularly 
devastating for individuals who have dementia and experience 
that. It changes the trajectory of their dementia in a very 
negative fashion.
    Dementia really is a looming crisis for our State and the 
Nation. Maine has the oldest median age, nearly six years older 
than the average median age in the United States, which means 
we have fewer working-age individuals to help care for our 
older adults and particularly those with dementia as their 
disease progresses.
    Projections for Maine are that the 65 and older population 
is the only population that is going to grow in the next 10 
years. Our total population will remain flat at about 1.3 
million.
    We currently have about 37,000 individuals diagnosed with 
dementia, and it is projected to increase by nearly 50 percent 
to about 53,000 in five years.
    Dementia is an epidemic, and it will have dire consequences 
on our economy, our health system, and our family structures if 
we do not act now to do something. Dementia stresses our State 
in many ways, including increased burden placed on caregivers, 
both paid and unpaid, a lack of safe housing, needs for 
transportation in our rural State, and a health care system 
that is already overburdened.
    In Maine, about two-thirds of patients with dementia die in 
nursing homes. We have fewer younger people, which means fewer 
formal and informal caregivers to help.
    Within our health system at MaineHealth, we are 
experiencing significant challenges already finding suitable 
living environments for hospitalized patients with dementia 
when they can no longer be cared for at home. This results in 
patients remaining at the wrong level of care in an acute care 
hospital when what they need is an environment designed to care 
for them with their chronic and progressive dementia.
    This puts a lot of stress on families, on the patients 
themselves, as well as the medical community providing the 
care. It creates a tremendous financial burden.
    Diagnosis and treatment of patients with dementia is not a 
routine part of clinical training for most providers and staff 
in many care settings. It is really critical that our primary 
care system become prepared to deal with cognitive assessment 
and care planning to provide those resources that individuals 
and their families need to deal with this progressive disease. 
Currently, dementia is a chronic terminal illness, and we need 
to prepare our health care system and communities to provide 
planning and support to patients once they are diagnosed even 
as we search for that cure.
    I would like to take a moment to share a couple of stories. 
I have utilized pseudonyms for these stories.
    I first met Mr. and Mrs. Keller about ten years ago when I 
diagnosed Mr. Keller with mild cognitive impairment. Sadly, his 
disease progressed to Alzheimer's dementia, and over the next 
several years he had a gradual decline and developed issues 
with walking and swallowing. Eventually, he began having more 
issues with eating and started to develop frequent pneumonias.
    I began visiting him in his home as it was nearly 
impossible for him to make it into the office. He had support 
from his wife, from paid caregivers and, intermittently, from 
other family. Eventually, we involved hospice, and he was able 
to die in his own apartment, as was his wish, with the support 
of his wife and family.
    During that time period, I got to know his wife well. She 
was a very active woman involved in her senior community. She 
suffered significant anxiety as her husband's disease 
progressed and required treatment of her own.
    After her husband passed away, I did not see her for a 
year, and then one day she appeared in my schedule as a new 
patient. She had developed memory loss.
    She no longer had a spouse who could help care for her. Her 
children lived away. They were around in the summer and really 
could not provide support.
    Mrs. Keller continued to live fairly independently with 
paid caregiver support and eventually needed to transfer to an 
assisting living level of environment. Her transition did not 
go well. She fell. She had a head injury. She developed 
delirium, and she has continued to decline today.
    She and her husband had tried to plan financially for all 
their needs, but their private caregivers are expensive and the 
money ran out. She now resides in a nursing home.
    Her children felt very guilty that they were not able to 
provide the same support for their mother that allowed their 
father to die at home, but the resources are simply not there.
    We need more flexibility in funding for caregiver support 
and alternative options for housing to care for individuals 
with dementia, and I believe in this case we could have had a 
better outcome.
    I have other cases and scenarios that I can share, but I 
see I am running out of time, so I would like to thank you for 
taking the time to hear my story.
    I implore you to continue to support increased funding for 
the support of caregivers and individuals with dementia now, to 
support alternative housing options and creative community 
supports for individuals with dementia. Ultimately, of the 
utmost importance is increase in funding to identify ways for 
prevention and cure of this devastating disease.
    Thank you.
    The Chairman. Thank you very much for your moving 
testimony.
    Ms. Smith and Mr. Gasby, when we were talking informally 
before the hearing, you talked about a public service 
announcement that you had made.
    Could you share with everyone here what you did to try to 
expand awareness and participation in clinical trials?
    Mr. Gasby. Yes, Senator. Excuse me.
    We are affiliated with the Brain Health Registry, and what 
the Brain Health Registry does is it goes to get people to 
participate in giving information so that they can be 
considered for drug trials.
    One of the main impediments to getting more funding, more 
research, more drugs online, is that we do not have enough 
people to participate so that they can be considered for these 
drug trials, and particularly in minority communities. There 
has been a--with the Tuskegee experiment, with things that have 
happened in the past, myths and some realities, African-
Americans and people who are not Caucasian are not 
participating.
    What most people do not realize is that to bring a drug to 
market costs billions of dollars and you need to have a genetic 
pool, a diverse pool, and so you need different people from 
different backgrounds. You need women. You need men. You need, 
you know, Asians. You need Latinos. You need African-Americans.
    This Brain Health Registry registers folks so that they can 
be considered for these drug trials.
    What we wanted to do is we wanted to break down that 
stigma, that it is okay, that, you know, government does do 
good things, and that going through trials is not going to be 
the Tuskegee experiment all over again.
    There are so many myths and so many taboos that have been 
existing out there, and we wanted to make sure--by being 
involved, we wanted to let people know we have to do this, not 
for just ourselves but for the future, to find the right 
medicines.
    The Chairman. Thank you.
    I want to thank you for doing that PSA, also. I have had 
the opportunity to see it.
    Mr. Gasby. Well, one of the great things about that PSA 
that we did was that it increased the overall participation by, 
you know, six percent within the minority community, but also, 
overall more people signed up because they were not aware that 
they needed this diversity in the gene pool.
    The Chairman. That is really terrific, particularly since 
African-Americans are more likely, as you pointed out in your 
testimony, to get Alzheimer's.
    I think your being out there has really helped to increase 
awareness, and I thank you both for that.
    Mr. Gasby. Thank you, Senator.
    The Chairman. Dr. Hodes, I have started visiting research 
centers, and I have talked to Dr. Petersen at length about the 
wonderful work at Mayo, and just two weeks ago I spent an hour 
and a half at Massachusetts General Hospital talking to the 
Alzheimer's researchers there, and I must say, and I want to 
share with this audience, that I see great promise and great 
hope on the horizon.
    One of your charts talked about the imaging that is now 
possible which was not just a few years ago. Alzheimer's could 
only be diagnosed definitively through a brain autopsy. Now we 
can do imaging that shows the beta-amyloid plaques and the 
tangles and tau.
    I learned at Mass General that there is actually an 
antibody that can be given when the beta-amyloid is developed. 
I do not know how effective or what stage that is at.
    There was so much exciting research going on just at Mayo 
and Mass General. I cannot wait to go to the University of 
Pennsylvania and to other research centers. I am sure there is 
one in Missouri as well.
    The problem is with only $600 million you cannot possibly 
fund all those exciting research applications.
    Can you give us some idea of what percentage you are able 
to fund of the promising projects that are out there?
    Dr. Hodes. Well, thank you for the question.
    It is very much the case that in the wealth of excitement 
and opportunities, gifted and committed scientists are 
proposing research that is far in excess of our ability to fund 
it now.
    The answer to your question in terms of percent can be 
answered in a very real, but in a sense superficial, way just 
by looking at the success rate we have or the pay line for 
applications, so that, of the applications that come in, in the 
area of Alzheimer's research, we are able to fund now in the 
range of eleven or twelve percent.
    It is easily said that twice that number, or more, are 
considered by peer review experts in the field as absolutely 
outstanding and meritorious of support, so that, at even that 
level, in terms of the research that we already have proposed, 
there is great room for more that could and should be funded if 
there were adequate resources.
    Beyond that, with sufficient resources, the ability to 
recruit and initiate new areas that are not even in the minds 
yet of investigators is a dividend that we very much look 
forward to.
    The Chairman. Of course, if researchers saw a bigger pot of 
money available, that too would produce more submissions, but 
eleven to twelve percent, when at least double that number are 
worthy of funding, I think is another strong argument.
    Senator McCaskill.
    Senator McCaskill. Thank you.
    I want to thank all of you.
    Let me ask; it is true this disease also disproportionately 
affects women, correct?
    Mr. Gasby. Yes.
    Senator McCaskill. More women than men and more African-
Americans than Caucasians?
    Mr. Gasby. Yes.
    Senator McCaskill. Let's talk a little bit about the 
reality of Medicaid in this equation.
    We have two issues really we are talking about here. One is 
investing in the research. The other is making sure that care 
can be given.
    Ms. Stemley, we live in a State where they have refused to 
expand Medicaid, refused to draw down the Federal dollars that 
are available for health care in our State, and the budget that 
we are currently debating cuts Medicaid by another $400 billion 
in this country.
    I am not sure that most people realize the percentage of 
nursing home patients that are (a) suffering from Alzheimer's 
and that are (b) needing help from Medicaid.
    What would you have done--I mean, I think there are 
stereotypes around Medicaid that are terribly unfair to women 
like your mother. Your mother worked thirty years. She had a 
pension. She had a plan, and then she got Alzheimer's, and you 
found yourself having to access Medicaid services for her long-
term care.
    What would you have done if those Medicaid services were 
not available?
    If there had been a block grant in Missouri, like the House 
has done in their budget, and the money was gone because it was 
October, what would you have had to do?
    Ms. Stemley. Senator McCaskill, I do not know.
    That thought--first of all, I was not familiar with the 
Medicaid process until we were thrown into this world, and so 
there have been many nights through this process when 
understanding the costs of long-term care and the realities of 
what we were facing because you are now facing the financial 
fight because now you have an extraordinary price tag to this 
disease, and then you have the emotional, the physical, and 
then you have that fight to go through.
    Initially, just understanding the costs, that we were about 
to go down this path, there were many nights that I was very 
scared because I know she does have a good pension, but she 
does not have the pension, and we do not have the resources to 
pay $5,000-plus, $8,000, $10,000 in certain cases a month to 
have a long-term care facility.
    I did not know what we would do if we were going to be 
denied. I did not know if she made too much, if she had--you 
know, all of these fears come into your mind: Do I make too 
much? Do I make too little? Am I going to be denied?
    It was not an option for us to be denied. I had to have the 
care.
    One of the very disheartening parts for this for me--and 
you pointed it out--is my mother is a very proud woman, and she 
did work for thirty three years, and she worked for the Federal 
Government for thirty three years, and she is very proud of it.
    Even today, her mind sometimes thinks she still has to go 
to work for the government, and so, you know, we play and do 
those sorts of things, but to know that all of those years of 
work are exhausted by a disease and not transported forward 
through an inheritance, or her grandchildren do not get to see 
it, and there are not things that she is leaving behind for her 
family, but this disease is exhausting everything is 
heartbreaking.
    I do not know what we would do, but that alone has been my 
fear many a nights, and that is why I said I thank God for 
Medicaid, and at the same time, we have never needed for 
anything. You know, we are, I guess, a middle-class family, and 
so I have never been in a position to have a need, and that was 
humbling, to be honest, but I sure was and am grateful for it 
because where would we be.
    Senator McCaskill. Well, I sure hope that you and all of 
the advocates in the room carry that message because I think 
there is--the stereotype is harming the Medicaid program. I 
think there are people that are comfortable assuming that the 
only people who need Medicaid are people who have not worked 
hard or people how are not trying.
    Ms. Stemley. No.
    Senator McCaskill. Nothing could be further from the truth, 
particularly when it relates to long-term care in this country.
    It seems to me that not funding research is dumb because it 
is going to cost us a lot of money and refusing to fund care is 
cruel, and so I hope that you all will continue to advocate in 
every office in the Capital on those two issues.
    Thank you, Madam Chairman.
    The Chairman. Senator Warren.
    Senator Warren. Thank you, Madam Chair.
    I apologize for my delay in getting here. I was also trying 
to cover a Banking hearing, so--but I wanted to be here.
    Alzheimer's forces families to watch helplessly as their 
loved ones slip away. The high cost of care also frequently 
stretches families to the breaking point, as you have just 
testified.
    According to the Alzheimer's Association, we will spend 
$226 billion caring for people with Alzheimer's this year, and 
by the year 2050 the yearly cost will be more than $1.1 
trillion.
    Now when the director of the National Institute of Mental 
Health testified in front of the HELP Committee during the last 
Congress, he noted that if we can prevent, or even delay, the 
onset of dementia we could save billions of dollars. He also 
said that this is really a matter of choosing to invest in 
research now or choosing to pay up in a big way later on.
    Clearly, Congress is choosing to pay up in a big way later 
on. Congress has reduced the purchasing power of the NIH by 
nearly twenty-five percent, and last year NIH spent only $562 
million on Alzheimer's disease research. That is about 2/10ths 
of one percent of what the disease cost us last year.
    Dr. Hodes, can you tell us very briefly how the reduction 
in support for NIH funding affected the ability of you and your 
colleagues to advance research on Alzheimer's?
    Dr. Hodes. Thank you, Senator Warren, for the question.
    It certainly is the case that the progress in Alzheimer's 
research is not being limited by great ideas or scientists 
capable of carrying out the research but our ability to support 
it.
    As in an earlier comment I noted, even if one looks at the 
number of outstanding applications that are currently being 
proposed by scientists and the proportion of those that we can 
fund, it is a conservative estimate that we could fund twice as 
much as we do now simply of the outstanding meritorious ideas 
being proposed and being moved forward at a greater speed.
    That is only really the first iteration because, 
undoubtedly, with more resources we would be able to recruit 
new investigators, establish new infrastructure for more 
innovative approaches, so that is a first-order response to 
your question.
    Senator Warren. That is right, so what you are really 
saying is we are funding half or fewer of the potential 
research avenues that might give us a cure for Alzheimer's.
    Dr. Hodes. Of the outstanding proposals that are currently 
being submitted to us, yes.
    Senator Warren. Thank you.
    Dr. Petersen, could you just add to that, please?
    Dr. Petersen. Well, I think another ramification of that, 
Senator Warren, is the fact that with the reduction in Federal 
funding there is also a reduction of the number of new 
investigators going into the field, and that is going to 
cripple us down the road, so if the young investigators see the 
old guys like myself struggling for funding in a research 
setting, they are saying, how am I going to survive?
    I am afraid that we are turning off a young generation of 
investigators that are going to be the ones who are going to 
lead us forth in the future. I see that as a real, real 
concern.
    Senator Warren. High cost right now by not funding 
Alzheimer's research, high cost long-term.
    Every single Member of Congress I have spoken with says 
that they support NIH and they support more medical research, 
but medical research takes money, and Congress has done 
absolutely nothing to actually get more money into the Agency.
    The House Republican budget and the Senate Republican 
budget were released last week, and both say that they support 
medical research funding, but what the Republican budgets 
actually do is lower the budget caps that are already crushing 
our research agencies, making it likely that the agencies like 
the NIH would see cuts, not increases, under these plans.
    Now earlier this year, I introduced the Medical Innovation 
Act, a bill that would boost NIH funding by about $6 billion a 
year. That is not enough, but it is a start, and we can do it 
without raising taxes, without gutting critical programs, 
without gutting vital research, and without adding a dime to 
the deficit.
    I hope that my colleagues who are serious about funding the 
NIH will join me in this effort or bring other ideas to the 
table because talk is cheap.
    We have an opportunity to make a real difference in the 
fight against Alzheimer's, an opportunity to save billions of 
dollars in unnecessary health and long-term care spending, and 
to give families their loved ones for more precious time. We 
are going to miss that opportunity unless Congress steps up and 
funds the NIH.
    Thank you, Madam Chairman.
    The Chairman. Senator Scott.
    Senator Scott. Thank you.
    The Chairman. Senator Scott, welcome.
    Senator Scott. Thank you, Chairwoman Collins. Thank you for 
holding this hearing and giving us all an opportunity to really 
interface with so many people that are committed to the cause, 
and for all those folks out there with the purple on today, 
thank you for your investment of your time and your energy on 
such an incredibly important topic. I know that all of our 
offices have been filled with your enthusiasm and your real-
life stories.
    I cannot think of anyone here on this panel who has not 
been impacted personally by Alzheimer's, and for me at least, 
Alzheimer's and Parkinson's, and watching the challenges of 
your loved ones. My grandmother passed away April 29, 2001, and 
just seeing the devastation and the challenges that she faced.
    Also, for those who have been support systems, if you have 
had to--if you have been blessed with the opportunity to care 
for someone with Alzheimer's, would you raise your hands?
    [Show of hands.]
    God bless you and thank you.
    It is amazing the impact that the disease has not only on 
the patient but on the family and on the loved ones.
    It is such a powerful witness that the folks that stopped 
by my office today spent a lot of time talking about their 
loved ones, their commitment to making sure that the research 
and the resources are available for the others who may be 
impacted by the disease as well.
    I thank you for your energy and your enthusiasm. It keeps 
all of us focused on the topic.
    My question is for Dr. Hodes.
    Thank you for your expertise and thank you for your 
contribution here today.
    It is a great opportunity for me to really spend some time 
talking about the success that we have had at home in South 
Carolina, the Medical University of South Carolina and so many 
folks at the Roper St. Francis Hospital system that has 
invested a lot of time looking for the resources to make 
progress.
    Roper St. Francis, in particular, in Charleston has 
received more than $20 million in grants researching treatments 
and caring for hundreds of Alzheimer's patients each and every 
month.
    Since 2006, the South Carolina Aging Research Network has 
also been doing some really great work on this issue in 
conjunction with other hospitals and research universities.
    There is still so much work to be done. I hear optimism, 
though, from researchers in our State, who believe that with 
the right resources they can do the most amazing things.
    The question I have for you, Doctor, is what does progress 
look like over the next ten years from your perspective?
    Are we meeting the National Alzheimer's Project Act 
milestones and updating them appropriately so that our 
researchers are working on the most critical projects?
    Can you point to specific achievements in collaboration and 
discovery since NAPA that has advanced the science on this 
issue?
    Dr. Hodes. Thank you for the comment, Senator Scott.
    I think there is well-justified and huge enthusiasm about 
the potential for progress as we have a convergence on more and 
more insight into basic molecular and cellular mechanisms 
behind Alzheimer's disease.
    In terms of the planning that is now in place as an 
intensified product of the National Plan, we, on a regular 
basis--most recently with the summit held just last month here 
in Bethesda, in the Washington area--convene regularly experts 
to help us to update and renew the areas of highest priority 
and then to establish milestones, just what we need to 
accomplish year by year in order to translate those priorities 
into the success that is the objective of the plan.
    In terms of some of the accomplishments that we have seen 
in recent years, as noted in some of my opening comments and 
comments for the record, we have seen progress in the ability 
to identify early stages of Alzheimer's disease in individuals 
long before the appearance of symptoms, giving us opportunities 
that just did not exist years ago to intervene with new 
treatments aimed at newly identified molecular targets and to 
understand whether they appear to be working or not by tracking 
biomarkers, again, long before we would identify progression to 
symptomatic disease. This is an example of the kind of progress 
we are making.
    I should add, much as we are pursuing this kind of 
research, we are also committed to important work to sustain 
the quality of life for those affected and their caregivers.
    The research proposals that are coming from your State and 
across the country are enormously gratifying and exciting.
    Coupled with it, I will say from our perspective, is the 
enormous disappointment, in fact, pain and anguish of the great 
number of those meritorious applications that we are unable to 
support.
    We are making progress, without question, toward an 
ultimate goal. The pace of that progress is being limited by 
the amount of research that we can support.
    Senator Scott. Thank you, sir.
    Thank you, Madam Chairwoman.
    The Chairman. Thank you very much, Senator.
    Senator Whitehouse.
    Senator Whitehouse. Thanks very much, Madam Chair.
    Let me open with a question and then make a comment. The 
question will be for, I guess, Dr. Hodes and Dr. Petersen.
    Could you--I was--I am on the Budget Committee, and we have 
got the budget on the floor. I have not been able to be here 
for the whole hearing.
    Could you be a little bit more specific about what you 
think the prospects are for a cure, how confident you are or 
how many viable paths toward a cure there are, so that a 
nondoctor like me can get a sense of how much confidence we can 
have?
    Dr. Petersen. Thank you, Senator Whitehouse.
    An excellent question, a difficult one to answer 
definitely, of course, but I think that there is enough 
exciting research out there right now, perhaps on new targets.
    This is a complex disease. It is not just a single-cell 
disease but really involves networks in the brain, so there are 
multiple targets out there.
    We are somewhat encouraged by a report just last week that 
one of the drugs that is under investigation for Alzheimer's 
disease to remove one of culprits, the plaques, the amyloid 
plaques in the brain, in early phase one results indicated 
that, in fact, there may be a path forward with this particular 
therapeutic insofar as the plaques were reduced as they 
measured them in patients over a year and the patients improved 
clinically relative to those who were on placebo.
    Very early phase one study. They are moving forward with 
phase three. I think it is this type of discovery that is going 
to lead to a hit, or more than one hit, in the relatively near 
future.
    To say how many, when, is very difficult, but I am 
encouraged that we are on the precipice of really handling this 
disease one way or another.
    Senator Whitehouse. Dr. Hodes, briefly.
    Dr. Hodes. I certainly reinforce very much what Ron has 
said.
    We do not know yet in this complex disease exactly which 
are going to be the optimal targets or the combination of 
targets, so that, our integrated approach now with input, 
again, from all the brilliant minds that we can converge on the 
question, is to be taking examples such as those which Ron 
mentioned, some of the best candidates for treatment now, and 
beginning the most rigorous clinical trials while, at the same 
time, recognizing that it is important to maintain early 
discovery efforts in basic science, looking for molecular and 
genetic targets, and building those into the next candidates 
for intervention, so that, we may have short-term successes 
with some of the current understanding, but we have couple that 
with a commitment toward developing deeper and deeper insights 
for better and better approaches to the future.
    Senator Whitehouse. Well, it is inspiring to hear that, but 
I am struck by the same fact that my colleague, Senator Warren, 
was struck by.
    Having just worked through the budget at the Committee 
level, having seen the House budget, being on the floor with 
the Republican budgets right now, you know, people can talk a 
good game, but the fact of the matter is that if you like 
sequester the House budget cuts below sequester on 
discretionary nondefense spending by nearly $300 billion. It is 
going to be devastating if a budget like that goes through.
    The fact that the House Republicans were willing to support 
that is a statement that nobody in this room should ignore, 
about the value of the support, not just for the research but 
also for the support of families who have got it already, as 
Ms. Stemley said so eloquently.
    I have heard speeches about how critical our deficit is and 
how we have to address our deficit.
    We had a pair of Republican senators last night on the 
floor, saying how critical it was to invest more in national 
security.
    We hear people talking about how critical it is to invest 
more in medical research.
    When it actually comes to the budget, well over a trillion 
dollars goes out the back door of the tax code through tax 
loopholes, through favored rates for people.
    Guess what? A lot of that stuff got brought in by people 
who are using their political power to get benefits for 
themselves. A lot of that stuff is pretty disgraceful on the 
merits.
    Do you know how many tax loopholes either the Senate 
Republican budget or the House Republican budget closed to 
address the deficit or closed to address national security or 
closed to address medical research? Zero.
    The true primary operating principle of both budgets is 
that every tax loophole is sacred and everything else comes 
second.
    It is very frustrating to sit here and hear you testify in 
such good faith and hear such prospects for progress and know 
how many people this illness affects and be in an environment 
in which every tax loophole, no matter how disgraceful, is 
viewed by some of us as more important than all of those 
issues.
    My time is expired.
    The Chairman. Before I call on the former chairman of this 
Committee, Senator Nelson, with whom I worked so closely in the 
last Congress, I do feel compelled to respond to the senator's 
comments.
    You know, Alzheimer's affects people whether they are 
Democrats, Republicans, Independents, Greens, males, females, 
Caucasians, Asians, African-Americans. It affects all of us, 
and it touches all of us, and the worst thing we can do is to 
make this a partisan issue.
    I have led the fight for more funding for Alzheimer's for 
years, and we have made not nearly enough progress, but we have 
made some incremental progress, and it has never been a 
partisan issue.
    With all due respect to my dear friend from Rhode Island, I 
would say if we want to achieve what everyone in this room 
wants to achieve, and that is to get a doubling of the funding 
as soon as possible and then increase the funding to the $2 
billion that has been recommended by the council, let's work 
together. Together.
    Senator McCaskill. I agree with everything the chairman has 
said.
    I just want to say that we do have our colleagues that will 
work together, and we are fortunate that one of them is 
chairman of this Committee.
    We do have challenges that are represented by--and I am not 
pointing out just Republicans or just Democrats, but there are 
Members of Congress that do not see the value in funding 
government agencies that do research.
    You know, what we will find is there will be some of our 
colleagues that will work in a bipartisan way, and I hope 
that--I think you know Senator Nelson is one of those. I am one 
of those. You are one of those, but what we have to work at and 
what we want----
    Senator Whitehouse. Do not leave me out. I am one of those.
    Senator McCaskill. And you are one of those.
    I want the advocates to work on realizing that it is time 
to hold everyone's feet to the fire regardless of their party, 
that the reality needs to match the rhetoric, that you cannot 
engage in the rhetoric of ``I support Alzheimer's research'' 
and then vote to cut funding to NIH. That does not work.
    It will not be my colleague, Susan Collins, that will be in 
favor of that, but there will be some, and those are the people 
you need to focus in on no matter what party they are.
    I think that is the issue that some of my colleagues on our 
side were discussing, that not everyone is as reasonable as the 
chairman of this Committee in terms of working in a bipartisan 
way. Some just want to dismantle public funding of everything 
from many of the long-term care programs to, in fact, NIH 
funding, so not you, but others.
    The Chairman. Senator Nelson, it is great to have you here 
today.
    Senator Nelson. Well, it is great to be back, Madam 
Chairman, and thank you for the great partner that you were in 
leading this Committee over the last couple of years.
    Now to those of you in the audience, you applauded to two 
things.
    You applauded higher money spending for NIH for research, 
and certainly, that bar graph right there indicates that more 
is needed, over $5 billion for cancer, $3 billion for HIV/AIDS, 
$2 billion for cardiovascular, and $586 million for 
Alzheimer's.
    You also applauded bipartisanship. Well, I want to give you 
an assignment.
    Now this Committee is bipartisan. That is the way it has 
been run the last couple of years and the way it is being run 
now by the two leaders.
    When money is being cut according to something called a 
sequester, which is nothing more than a meat cleaver across the 
board of the entire budget--and that happens to get NIH as it 
did three years ago when Dr. Francis Collins, the head of NIH 
had to cancel 700 medical research grants to research 
institutions around the country, including universities and 
medical research institutions--then that is going to affect the 
very thing that you are so concerned, and so my assignment is 
that you need to have a prayer session with the Members of 
Congress who are voting to cut NIH.
    Now let me say to Ms. Stemley and Mr. Gasby you are doing 
incredible work to make sure that your family is taken care of, 
and we understand the sacrifice and the unselfishness with 
which you approached it.
    Ms. Smith, it takes courage to raise awareness of the 
disease, so thank you for being here and highlighting that.
    Dr. Hodes and Dr. Petersen, it is great to see both of you 
again. Thank you for coming back to update us and thank you for 
your continuing work.
    Dr. Weirman, when you have conversations with your 
patients, can you broach the subject? Do you tell them what 
they are going to have to plan? Because here is a report in the 
Washington Post that says that less than half the people with 
Alzheimer's reported that they had been told about their 
dementia.
    What do you do when you advise your patients?
    Dr. Weirman. I work with folks with dementia at all stages. 
What they hear is different at different stages.
    Early on, it is about the diagnosis and what treatments are 
available and where they are at now, addressing current issues.
    Usually, in subsequent visits, it is about future planning, 
and that involves them and their caregivers or surrogate 
decisionmakers, assuring they have a plan in place for what 
they want to do, what is important to them, but also includes 
looking at what their financial situation is and understanding 
what is realistic for them to plan for in the future.
    I recommend a lot of consultation with elder law attorneys 
and ask caregivers to be realistic about what they can offer. I 
think that that is really important, giving caregivers 
permission not to take it all on their shoulders.
    Unfortunately, I do have to advise at times that our 
hospital system is the ultimate backup. If they get into crisis 
despite all of our planning, that is where people have to go in 
our community. It is really unfortunate because it is really 
not a great place to be when you have cognitive impairment.
    It is very much a part of my practice to do that.
    I think it is really challenging for primary care 
physicians who take care of a broad array of patients to 
approach that routinely in their practices, and we are working 
with them, hopefully, to begin incorporating that.
    I think whether you have dementia or anything else you have 
got to talk with your families; you have got to make sure that 
you are thinking about the what-if's, and it is hard for us to 
do that, but we all need to be doing that, whether we have 
dementia or not.
    Senator Nelson. Well, all of you, this is one of the larger 
audiences for a Committee hearing in the months that we have 
started this new Congress, and I would take your concern, your 
energy, your activism and share it.
    We are right on the cusp, and the researchers out in NIH 
will tell you this. We are right on the cusp of finding a lot 
of cures for many different kinds of cancers. We know a lot 
more about cardiovascular, and look at all of the advances in 
HIV/AIDS; they are even talking about taking some medicines, 
attaching them to the HIV virus as a way to attack some 
cancers. I mean, it just blows your mind what is going on.
    What we need to do now is to focus and get the research 
done to be on the cusp of solving this problem in Alzheimer's.
    Thank you, Madam Chairman.
    The Chairman. Thank you very much, Senator Nelson.
    I know that Senator Kaine is on his way. We will do a 
couple more questions in the hopes that he can get here.
    Senator McCaskill. He is here.
    The Chairman. Boy, what good timing.
    While he is getting set up, I am just going to followup 
with a quick question for Dr. Weirman, and that is I was 
surprised to learn from your testimony that the diagnosis and 
treatment of patients with dementia is not a routine part of 
the clinical training for most health care providers.
    If you look at the trajectory of Alzheimer's and other 
dementias, and the number of people and their families who are 
going to be affected in the near term--we hope we will have a 
cure or means of prevention or effective treatments for the 
long term--that really, that lack of training really, surprises 
me.
    Is that changing now, in your judgment, and why do you 
think there is not more emphasis put on that training?
    Dr. Weirman. There has been a lot more emphasis in the last 
few years as far as setting milestones for medical education 
all the way up through residency training. I think we have made 
some headway in the medical community.
    I think it is incredibly variable when individuals go to 
different programs, what they get. Most individuals will get 
training in older adults but not specifically in cognitive 
impairment and working with dementia, and what they get 
probably is not enough at this time.
    In my experience, this disease--each of us has our own 
personality and experiences, and you throw a disease that 
affects your thinking ability on top of that, and it looks very 
different in different individuals.
    It takes a lot of experience and a lot of training to work 
with these individuals and their families, and you really need 
to do that. There needs to be more emphasis and time on this.
    This goes from medical providers. It goes from your front-
line staff, whether they are office assistants and people 
answering the phone and scheduling appointments, in medical 
communities.
    Then we need to be working within our--outside the medical 
community, in our larger communities, with education and 
training for identification. We have done a lot in the banking 
community about looking for exploitation and that sort of 
thing, and we need to continue that. Much like at one time we 
were training hairdressers to look for evidence and talk with 
their clients about evidence for physical and emotional abuse, 
we need to be doing similar things with other people in our 
community to help us identify individuals who are having issues 
so that we can work with them.
    The Chairman. Thank you.
    Senator Kaine.
    Senator Kaine. Thank you, Madam Chairwoman, and thank you 
for filibustering a bit until I got here. This was deeply 
important to me, but I was in an Armed Services hearing, and 
particularly, I want to thank Mr. Gasby and Ms. Smith.
    Thank you guys so much for doing the work that you are 
doing to really educate and demonstrate the challenges of early 
onset Alzheimer's. It is such a difficult thing, and obviously, 
in the midst of a difficult thing, to try to help others is 
really laudable. I really want to express my appreciation to 
you for that.
    This is an issue I am dealing with in my own family, and it 
is just new, and it is hard to figure out, and the challenge 
for family members and caregivers, it is just a hard thing.
    Can I just begin by expressing my gratitude to you for 
being willing to be courageous and, hopefully, educate others 
about this?
    Mr. Gasby. Thank you very much, Senator Kaine.
    You know, we are here because we have been fortunate and we 
have been blessed with some of the great fruits of this great 
country of ours.
    When you look around, and you start to get involved and 
give back, and you see people struggling, and you see single 
head of households who do not have anyone, any resources, and 
they are dependent totally upon the system, and you see how 
they are falling through the cracks, you realize that if you 
are going to stand for something it has got to be more than 
just yourself. You know.
    Coming from Brooklyn, from humble beginnings, and having 
had a chance to meet one of the greatest human beings I have 
ever met, my wife, the nicest person, to see what she--she 
taught me how to give and what philanthropy was all about.
    I know what we have to do, and it is not about us.
    It is about those folks behind us. It is about those folks 
who--you know, at night, when you cannot sleep because you know 
there is a person in another room that is going through holy 
hell, and you have got to get up and go to work, or you have 
got to go and help change them, or you have got to go quiet 
them down, or you just have to be able to just hold them.
    You understand that if you are going to stand for anything, 
stand for people who need the help the most, and the caregivers 
need it, and we have got to make a difference.
    I am blessed that I have a great partner, but I also am 
blessed that because of the opportunities we have been 
afforded, to try to give back, so thank you.
    Senator Kaine. Well, you know, we do not necessarily choose 
what happens to us, but we do choose what we do with it.
    You guys have made a really good choice, and all who are 
here trying to, you know, be a beacon of hope in a situation 
that can seem hopeless but for which there is reason to be 
hopeful.
    Mr. Gasby. Senator, I believe in one thing in life. You 
play the hand you are dealt, but you play it to win.
    Senator Kaine. Yes, amen to that. Amen to that.
    Well, let me ask--I want to ask now to the other witnesses, 
especially those from the research community. Talk to me a 
little bit about early onset Alzheimer's and from what the 
research is telling you. You know.
    How is it different? Or, is it not really different; it 
just occurs earlier in life?
    Are we dealing--is it the same medical condition as later-
onset, or is it different in significant ways that we 
understand it, if you could?
    Dr. Petersen. Thank you, Senator Kaine, for that question 
and comment.
    Early onset disease is really divided into various stages. 
It really is defined by the age of onset, but we have learned 
in recent years that it is probably the same underlying disease 
process.
    Now having said that, a person is affected with Alzheimer's 
disease, say, in his or her 50's versus somebody in their 80's 
may have different contributions to the clinical picture.
    They look the same. They are forgetful. They develop 
problems with thinking and activities of daily, but in the 
older person, there is the amyloid and the tau, the plaques and 
the tangles, but also some other pathologies--vascular disease 
and a variety of other things.
    In the younger-onset person, it is more likely to be a pure 
form of the disease with the amyloid protein, perhaps the tau 
protein.
    I think both of them are comparable. Treatments that are 
likely to be effective for young-onset will work for old-onset 
and vice versa.
    There may also be a slight predilection toward a more 
genetic contribution in the younger-onset disease, as with most 
diseases. When they occur earlier in life, they tend to be more 
genetically loaded than later in life.
    Basically, the biology of the diseases are quite 
comparable, late-onset and early onset.
    Senator Kaine. Any other answers to that question?
    How about the caregiver side? Because we have folks here 
representing organizations that do a lot of work with 
caregivers.
    I am certain that you have already testified a good bit 
about recommendations you might have for us.
    Just the sheer numbers of caregivers in my State and, I am 
sure in all of our states, is just kind of staggering. You 
know.
    What are the kinds of things we ought to be considering 
from a policy level to make the caregiving task, although will 
not an easy one, but maybe to make it a little bit--lighten the 
load a little bit?
    Ms. Stemley. Thank you, Senator Kaine.
    I am here on behalf of caregivers, but I am one of fifteen 
million.
    There are many caregivers in this room that have different 
stories. Many of these stories this week--I have heard a lot of 
stories this week, and they are all different.
    We share very similar things, though. We share the same 
sorrow. We share the same pain. We also share the same hope, 
and we share the same vision that this is going to end in our 
lifetime and that we are going to fight until we see this end.
    One of the things that we are here and that we are 
collectively coming together as one fist, and that is asking--
you are asking for what we need now, and what we need now at 
this point is for the HOPE Act to be passed, and we need it to 
be passed in this Congress.
    We need it because it is going to improve caregiving and 
care planning services for individuals like myself, for 
families, for those that are living with dementia, that once 
they receive that diagnosis they walk out of their doctors' 
offices, one, receiving the diagnosis, and then two, knowing 
what the next steps are.
    That Alzheimer's disease diagnosis will be in their medical 
records, and it will follow them, and it will go with them 
wherever their lives may take them.
    Whether they begin to then develop diabetes or anything 
else, they will know that this doctor will know, hey, this 
patient has Alzheimer's, and so there are some additional 
intricate needs that I need to provide for this individual to 
give the best possible care that I can, and so we need this Act 
to be passed in this Congress. We need it now for--you know.
    My situation is a little different because I am five, six 
years down the road now. Caregiving and care planning services 
did not happen for me exactly the way I probably would have 
wanted it to had the HOPE Act been in place for me, but it can 
help a lot of other people. It can help millions of people.
    We need that help to make this load easier because it is 
hard, and we need help to carry this burden because we are 
carrying it the best that we can, but we are just asking for 
help.
    Senator Kaine. Great. Thank you very much.
    Thank you, Madam Chair.
    The Chairman. Thank you, Senator.
    Senator Tillis is on his way back. That means I get to ask 
another question.
    My question is for both Dr. Petersen and Dr. Weirman.
    Dr. Weirman mentioned earlier that you look at delirium as 
well. I am wondering if there is research that shows that 
delirium in older people, after surgery where a general 
anesthetic has been involved, which I have seen cases of, can 
be a trigger.
    I see Dr. Hodes nodding also. Maybe I will start with him.
    Is there a link? Can that be a trigger of Alzheimer's?
    Is there a link between the delirium that you sometimes see 
in older people after an operation that involves a general 
anesthetic and dementias?
    Dr. Hodes. Well, thank you.
    Good points, and then the nodding is because there is, in 
fact, good data to a couple of points.
    The first, whether delirium can be succeeded, or followed, 
by a decrease in cognitive function and a progression of 
dementia. The answer appears to be yes, but so also for general 
anesthesia, even if there is not delirium.
    Often, after general anesthetic, there can be a short-term 
decline in cognitive function. Most people recover fine, but 
the failure to recover relatively quickly is also predictive of 
long-term decline.
    Both of these insults, whatever exactly that means, to the 
brain as a result of deep general anesthesia or delirium, do 
seem to be capable of accelerating the functional decline.
    The Chairman. Dr. Petersen?
    Dr. Petersen. I agree with Dr. Hodes.
    It also pertains to the issue of what we call cognitive 
reserve; that is, if the brain is injured, how much resilience 
does it have to respond?
    Sometimes with people who are developing a dementia of one 
kind or another, and then undergo general anesthesia, they may 
have a lower threshold for becoming delirious in that context.
    It may contribute to the downward decline, but it also may 
just be a stress test on a system that is starting to gradually 
fail and, consequently, be a harbinger of what could be 
dementia in the future. Difficult to figure out cause and 
effect there, but it is common.
    The Chairman. Dr. Weirman, and your response also because I 
have been discussing this issue for a couple of years with 
anesthesiologists from Maine Med, where you work, and others on 
whether they should be doing more with older patients to be 
careful about what kind of anesthetic they use, only use a 
general one if it is really necessary.
    Could you illuminate us on this as well?
    Dr. Weirman. I think it gets at to why we are here is we 
need more research so that we know what to advise.
    You know, I certainly see people who seem to be functioning 
quite well before a surgery and then are not doing so well 
after, and I think, as we have more research now where we can 
identify that there are changes happening before it is evident 
in day-to-day life, my suspicion is that it is those people 
that we see have the decline after, and as it is, it is like a 
stress test that you fail--is kind of how I have thought of it 
as well.
    I think we just do not know.
    I think that definitely in an older population, doing more 
assessment prior to major surgeries, if it is a planned process 
so that you can at least understand what the risks are going 
into it, so that people can incorporate that into their 
decisionmaking, I think is really important.
    As is outlined, I think we need more research into what 
anesthesia is best and how to further risk-stratify folks so 
that we can do the right thing for them and not put them down 
this path that we cannot stop.
    The Chairman. Dr. Petersen and Dr. Hodes.
    Dr. Petersen. If I may, this is a sufficiently important 
issue that the Alzheimer's Association has actually established 
a professional interest group that is looking at this very 
issue. They meet at the international conference every summer, 
so this is a hot topic with regard to brain resilience and 
cognitive function and its role in the development of dementia, 
so it is a good question.
    The Chairman. That is really interesting. I was not aware 
of that.
    Dr. Hodes.
    Dr. Hodes. Again, extremely good and important question.
    Research directed at this actually now includes approaches 
to using EEG measurements of brain function during anesthesia, 
with an attempt to monitor the level of anesthetic, with an eye 
toward brain activity and anesthesia and to look at the effect 
of that kind of monitoring on cognitive outcomes, so that is 
one area where we may be able to develop some rather quick 
answers that will make a difference.
    The Chairman. Interesting. Thank you.
    Senator Tillis, we are delighted that you made the effort 
to come back.
    Senator Tillis. If I am out of breath, or if I seem out of 
breath, it is because I am. I was running back.
    I apologize I had to leave. I had a conflicting Committee 
assignment.
    I want to thank the chair and the ranking member for their 
leadership.
    This is a very important issue to me, personally, because I 
have been a caregiver.
    I just want to let you know that we not only need to focus 
on, excuse me, the research, but we also need to make sure that 
we have the right funding, Madam Chair, excuse me, to make sure 
that the caregivers are--that they have the resources and the 
education that they need to do the best job for caregiver 
because in my personal experience I was a grandson of a 
grandmother who got Alzheimer's at a relatively early age, and 
I was not quite sure what I needed to do to help my 
grandmother, but I was pretty certain that my mother and her 
two sisters were not doing it the right way, and other family 
members.
    That is why I went back and took some college courses to 
actually better prepare me to help my mother and my two aunts, 
who were the primary caregivers, to be a better caregiver.
    I certainly--I am not going to ask you questions because I 
know you have been questioned to death. I will read the record. 
I just wanted to communicate, first, how important it is for 
something like this.
    Another area where I have a lot of passion is around 
Alzheimer's--or, not Alzheimer's. Around autism.
    This is a classic example where I think the head and the 
heart meet because with the investment of resources we do the 
right fiscal thing, but we do tremendous transformational 
impacts for those who are afflicted with Alzheimer's.
    We need to invest, and we need to invest in the right 
research. We need to identify some of the most promising 
research--I read earlier this week about some other potential 
promising treatments--and make sure that we are putting those 
on the front burner because in a State like North Carolina, 
where over the next ten years I am going to see the population 
of 65 and over go up about 30 percent, those suffering from 
Alzheimer's in a State that is growing an increasingly large 
aging population.
    We need to make sure that we educate our members here in 
the House and the Senate on the compelling fiscal reasons to do 
something that produces a transformational outcome.
    I want to thank you all for being here. I want to thank all 
the folks in purple.
    My daughter would love this because it is her favorite 
color.
    I want to thank you all for being here and advocating. I 
really encourage you to reach out and explain the 
transformational opportunity we have to make this a priority.
    Thank you, Madam Chair.
    The Chairman. Thank you very much, Senator, and well said.
    We were talking earlier that when we are spending $226 
billion as a society on a disease that is going to bankrupt our 
Medicare and Medicaid programs, that if the suffering of 
families does not move you, the economics of it ought to move 
Congress to do the investments that are necessary, and your 
focus on caregivers is absolutely appropriate, too.
    I want to thank our witnesses today for their extraordinary 
testimony. Each of you has brought so much to the debate and 
discussion today, and I think you have given us a very 
comprehensive look at a devastating disease.
    I want to assure you, as the co-chair of the Alzheimer's 
Task Force in the Senate, that I will continue to work with my 
colleagues like Senator Tillis and like Senator McCaskill to 
make sure that we are keeping a focus on the disease, that we 
are educating our colleagues, and that we are increasing the 
funding.
    We cannot do it without your help. As I said, I have an 
amendment that I am going to ask your help on, on the budget, 
to have--essentially get the Senate on record for increasing 
the funding level that NIH gets for Alzheimer's research, and I 
hope as you do your office visits that you will urge your 
senators to support that amendment.
    It is either going to come up this afternoon or tomorrow. 
You may not have time if it is this afternoon, but text 
messages work, too.
    I want to thank all of you for traveling from all over the 
country to come to Washington to tell your personal stories and 
to help advance the fight against Alzheimer's.
    As we have said today, the color purple represents the 
Alzheimer's movement. It is my hope that some day soon the 
color purple will also represent those who survive Alzheimer's.
    We are going to keep the hearing open--the hearing record 
open until Friday, April 3rd. There may be additional testimony 
or questions for the record.
    Again, my sincere thanks to this wonderful panel and to all 
of the advocates who are here today and everyone who 
participated in today's hearing, including my staff and Senator 
McCaskill's staff which have worked very hard and also share a 
real commitment to the cause.
    This concludes the hearing.
    Thank you for being here.
    [Whereupon, at 4:14 p.m., the Committee was adjourned.]



      
      
      
      
      
      
      
      
      
      
      
      
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                                APPENDIX

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                      Prepared Witness Statements

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                       Statements for the Record

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