[Senate Hearing 105-555]
[From the U.S. Government Publishing Office]


                                                        S. Hrg. 105-555


 
                          ALZHEIMER'S DISEASE

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

                                HEARING

                                before a

                          SUBCOMMITTEE OF THE

            COMMITTEE ON APPROPRIATIONS UNITED STATES SENATE

                       ONE HUNDRED FIFTH CONGRESS

                             SECOND SESSION

                               __________

                            SPECIAL HEARING

                               __________

         Printed for the use of the Committee on Appropriations


                               


 Available via the World Wide Web: http://www.access.gpo.gov/congress/senate

                                 ______

                     U.S. GOVERNMENT PRINTING OFFICE
 49-637 cc                   WASHINGTON : 1998
_______________________________________________________________________
            For sale by the U.S. Government Printing Office
Superintendent of Documents, Congressional Sales Office, Washington, DC 20402
                           ISBN 0-16-057255-X



                      COMMITTEE ON APPROPRIATIONS

                     TED STEVENS, Alaska, Chairman
THAD COCHRAN, Mississippi            ROBERT C. BYRD, West Virginia
ARLEN SPECTER, Pennsylvania          DANIEL K. INOUYE, Hawaii
PETE V. DOMENICI, New Mexico         ERNEST F. HOLLINGS, South Carolina
CHRISTOPHER S. BOND, Missouri        PATRICK J. LEAHY, Vermont
SLADE GORTON, Washington             DALE BUMPERS, Arkansas
MITCH McCONNELL, Kentucky            FRANK R. LAUTENBERG, New Jersey
CONRAD BURNS, Montana                TOM HARKIN, Iowa
RICHARD C. SHELBY, Alabama           BARBARA A. MIKULSKI, Maryland
JUDD GREGG, New Hampshire            HARRY REID, Nevada
ROBERT F. BENNETT, Utah              HERB KOHL, Wisconsin
BEN NIGHTHORSE CAMPBELL, Colorado    PATTY MURRAY, Washington
LARRY CRAIG, Idaho                   BYRON DORGAN, North Dakota
LAUCH FAIRCLOTH, North Carolina      BARBARA BOXER, California
KAY BAILEY HUTCHISON, Texas
                   Steven J. Cortese, Staff Director
                 Lisa Sutherland, Deputy Staff Director
               James H. English, Minority Staff Director
                                 ------                                

 Subcommittee on Departments of Labor, Health and Human Services, and 
                    Education, and Related Agencies

                 ARLEN SPECTER, Pennsylvania, Chairman
THAD COCHRAN, Mississippi            TOM HARKIN, Iowa
SLADE GORTON, Washington             ERNEST F. HOLLINGS, South Carolina
CHRISTOPHER S. BOND, Missouri        DANIEL K. INOUYE, Hawaii
JUDD GREGG, New Hampshire            DALE BUMPERS, Arkansas
LAUCH FAIRCLOTH, North Carolina      HARRY REID, Nevada
LARRY E. CRAIG, Idaho                HERB KOHL, Wisconsin
KAY BAILEY HUTCHISON, Texas          PATTY MURRAY, Washington
                      Majority Professional Staff
                            Bettilou Taylor

                      Minority Professional Staff
                              Marsha Simon

                         Administrative Support
                              Jim Sourwine



                            C O N T E N T S

                              ----------                              
                                                                   Page
Opening remarks of Senator Arlen Specter.........................     1
Opening remarks of Senator Charles E. Grassley...................     3
Opening remarks of Senator Lauch Faircloth.......................     4
Statement of Piper Laurie, actress...............................     4
    Prepared statement...........................................     6
Statement of Orien Reid, senior vice chair, board of directors, 
  Alzheimer's Association........................................     7
    Prepared statement...........................................     9
Remarks of Senator Tom Harkin....................................    10
Statement of Rosemary Cronin, wife of Alzheimer patient..........    12
    Prepared statement...........................................    15
Statement of Steven T. Dekosky, M.D., professor of psychiatry, 
  neurology, neurobiology, and human genetics, Western 
  Psychiatric Institute Clinic, University of Pittsburgh Medical 
  Center.........................................................    17
    Prepared statement...........................................    20
Prepared statement of Senator Larry E. Craig.....................    22
Statement of Don Schmechel, M.D., director, Joseph and Kathleen 
  Bryan Alzheimer's Disease Research Center, Duke University 
  Medical Center.................................................    23
    Prepared statement...........................................    24
Symptoms.........................................................    26
  



                          ALZHEIMER'S DISEASE

                              ----------                              


                        TUESDAY, MARCH 24, 1998

                           U.S. Senate,    
    Subcommittee on Labor, Health and Human
     Services, and Education, and Related Agencies,
                               Committee on Appropriations,
                                                    Washington, DC.
    The subcommittee met at 9:30 a.m., in room SH-216, Hart 
Senate Office Building, Hon. Arlen Specter (chairman) 
presiding.
    Present: Senators Specter, Faircloth, Craig, and Harkin.
    Also present: Senator Grassley.

                       NONDEPARTMENTAL WITNESSES

STATEMENTS OF:
        PIPER LAURIE, ACTRESS
        ORIEN REID, SENIOR VICE CHAIR, BOARD OF DIRECTORS, ALZHEIMER'S 
            ASSOCIATION
        ROSEMARY CRONIN, WIFE OF ALZHEIMER PATIENT
ACCOMPANIED BY BOB CRONIN, ALZHEIMER PATIENT


                   opening remarks of senator specter


    Senator Specter. Good morning, ladies and gentlemen. The 
hour of 9:30 a.m., having arrived, we will begin this hearing 
of the Appropriations Subcommittee on Labor, Health and Human 
Services, and Education.
    We are delighted to welcome the Alzheimer's Association for 
our first hearing this morning. This is the 10th anniversary of 
the Alzheimer's Association Public Policy Forum. This morning's 
hearing is the kickoff for their Capitol Hill Day.
    Alzheimer's disease is tragic, all-encompassing. It has 
struck some 4 million Americans, at an enormous cost in human 
suffering, family suffering, and dollars and cents. There is a 
concern that there may be as many as 14 million people 
suffering from Alzheimer's disease [AD], by the time the baby 
boomer generation reaches the age of 65. At 65, the statistics 
show that 1 in 10 persons has Alzheimer's, and nearly one-half 
of those over the age of 85 have Alzheimer's disease.
    It is enormously expensive. Its impact was brought sharply 
into the American focus when President Reagan made the public 
statement that he had Alzheimer's. Just last week, our former 
colleague, Senator William Proxmire, made a public statement 
that he has Alzheimer's.
    If the incidence of Alzheimer's can be delayed by some 5 
years, the estimates are that we would cut costs by as much as 
$50 billion. Those figures are really hard to quantify, but 
there is no doubt that if Alzheimer's could be delayed, it 
would be an enormous economic saving to the country. A 
conservative estimate places the cost of Alzheimer's at 
something in the range of $100 billion a year.
    There is an effort to increase funding for Alzheimer's by 
$100 million this year. That is a laudable goal. The fiscal 
year 1998 funding was a shade under $350 million--$349.2 
million. The goal which Senator Harkin and I have, along with 
this subcommittee, the full appropriations committee, the 
Senate and the Congress, is to see if we cannot double the 
National Institutes of Health research funding in the next 5 
years.
    But candidly, it is easier said than done. On Capitol Hill, 
you get a lot of smiles and sometimes not much cash. Last year, 
the Senate passed a resolution unanimously, 100 to nothing, 
affirming the goal of doubling National Institutes of Health 
funding in 5 years. National Institutes of Health is where 
Alzheimer's research gets its money. However, when the budget 
committee returned the health account, it was short $100 
million.
    Senator Harkin and I then offered a resolution to increase 
the funding for NIH by $1.1 billion, because we had targeted a 
7.5-percent increase. If we added $1.1 billion it would net 
down to $952 million, which was what our goal was. That 
resolution lost, 63 to 37. So, the Senate was very good in 
expressing its druthers, but not very good in expressing its 
dollars.
    Senator Harkin and I went back to the drawing board--I hate 
to say so many good things about him in his absence, but he 
will be along in a minute or two. [Laughter.]
    I know he has another commitment.
    We went to work with the sharp pencils, and we found the 
money in the balance of the budget for our three subcommittees. 
But, when we take money for NIH, candidly, we are shorting 
education in some phase, or worker safety. Our funding not only 
goes for the Department of Health and Human Services, but also 
for Education and for Labor, which includes labor safety.
    However, we were able to work out the $952 million in the 
Senate bill. In conference, we retained $907 million, which was 
a very, very large addition to the NIH funding, but candidly, 
in my sense, not enough.
    We have a Federal budget of $1.7 trillion. Do you know how 
much money that is?
    Well, nobody else does either. [Laughter.]
    But this large room would have insufficient space to stuff 
10,000-dollar bills into it.
    And I believe that if we set our priorities right, we could 
double the funding for NIH in 5 years. [Applause.]
    I do not mind being interrupted for applause. [Laughter.]
    The hearing we have today, with so many prominent people, 
will help us in this respect.
    I am delighted now to yield to my distinguished colleague, 
the senior Senator from Iowa. Senator Grassley and I were 
elected in the same year, 1980. Senator Grassley chairs the 
Senate Committee on Aging, which has a very large role on 
Alzheimer's funding and has done an excellent job.
    The only disadvantage that Senator Grassley has labored 
under in his 17 years and almost 3 months in the Senate is that 
in many quarters he is mistaken for me. [Laughter.]
    You can see how erroneous that is, what a good-looking 
fellow Chuck Grassley is.
    I am delighted now to yield to my colleague, Senator 
Charles E. Grassley. [Applause.]


             opening remarks of senator charles e. grassley


    Senator Grassley. I appreciate the applause, but it is not 
quite appropriate for a congressional hearing. And I will just 
say that so that the chairman will not have to gavel the 
audience while he is the chairman.
    Senator Specter. There was not all that much applause.
    Senator Grassley. OK. [Laughter.]
    First of all, I thank the chairman of this subcommittee, 
Senator Specter, for inviting me to visit. I am here to 
advocate more money for research, but I am also here to welcome 
Mr. and Mrs. Bob Cronin, from the State of Iowa, who are going 
to testify on the importance of money for Alzheimer's research 
and also to tell you about the struggle of their family with 
this disease.
    As chairman of the Special Committee on Aging, I am 
especially concerned about the financial and emotional 
consequences of Alzheimer's disease. Four million people in the 
United States suffer from this disease. This number does not 
include the millions of family members who also have to cope 
with the disease because of somebody else in the family 
suffering.
    With the aging of the baby boomers, 14 million in the 
United States are expected to have Alzheimer's disease by the 
middle of the next century. This will affect tens of millions 
of family members and friends. Past investments in research 
have allowed for important advances in the understanding of 
this disease.
    For instance, we now know that the disease process may 
begin in the brain as much as 20 years before symptoms of 
Alzheimer's appear. New techniques are now available for 
diagnosing the disease. And two drugs have shown some success 
in helping slow the progress of the disease. We are also 
learning how inexpensive treatments like vitamin E may help to 
slow or prevent the disease.
    So I commend Senator Specter for calling this hearing to 
highlight the importance of medical research for Alzheimer's 
disease. The chairman can be certain that I understand the 
challenges of crafting one of the most difficult and perhaps 
the most complex appropriation bills Congress must consider 
each year. And I can say flat out that probably this bill is 
the most difficult of all 13 that the Appropriations Committee 
must put together. So Senator Specter has the most difficult 
job.
    To help meet the urgent needs of research, I would like to 
ask the distinguished chairman to keep in mind the importance 
of adequate funding for the National Institutes of Health for 
Alzheimer's Research. The challenges and opportunities 
surrounding our aging populations has never been greater.
    Thank you, Mr. Chairman.
    Senator Specter. Thank you very much, Senator Grassley.


               opening remarks of senator lauch faircloth


    We have just been joined by our distinguished colleague 
from North Carolina, Senator Faircloth.
    Lauch, would you care to make an opening statement?
    Senator  Faircloth. Yes, I do, Senator Specter.
    I want to thank everyone for your expression of interest in 
a disease that promises to be the epidemic of the millennium. 
This epidemic is one marked with the agony of saying goodbye to 
someone who will linger as a ghost before us for years. I 
watched this with a member of my family, and I have seen it 
with others.
    What other disease do we know today that can cause someone 
to intentionally abandon a parent at a baseball game or 
shopping center just to stop the pain?
    It is a tragic disease, and there is no such thing as a 
mild case or an easy case. Everyone with Alzheimer's will 
ultimately need full-time care. And with the growing number of 
two-worker families, how will our society of aging baby boomers 
and their children cope with this disease?
    Thanks to the wonderful people at the Bryan Alzheimer's 
Research Center at Duke University in my home State of North 
Carolina, the gene markers for the disease have been 
identified. The Bryan Center was one of the first of 28 
Alzheimer's disease research centers to be established. They 
were the first center to report on the genetic link to the 
disease in 1993.
    I want to welcome the very distinguished Director of Bryan 
Center, Dr. Don Schmechel, who will be testifying today. Aside 
from his world-famous research on the disease, Dr. Schmechel 
still takes time several days a week to treat Alzheimer's 
patients and their families.
    I had a very, very small part to play in encouraging Mr. 
Bryan to establish the center. I was with him many nights, in 
discussing what could be done and what might be done. As many 
of you might know, my mother-in-law, Mrs. Bryan, had 
Alzheimer's for about 10 years. So it was a very moving time 
with him. He was determined to try to do something about it, 
and in the establishing the center, I think he has.
    I thank you, Mr. Chairman.
    Senator Specter. Thank you very much, Senator Faircloth.
    We would now like our panels to come forward: Mr. Bob and 
Mrs. Rosemary Cronin, Ms. Piper Laurie, Ms. Orien Reid, and Dr. 
Steven DeKosky, and Dr. Don Schmechel.
    We are going to defer the testimony of Mr. and Mrs. Cronin 
for just a moment or two, because Senator Harkin has not yet 
finished with a commitment, but will be here shortly. Mr. and 
Mrs. Cronin are from Iowa so I hope Senator Grassley will not 
mind that we have both of the Senators from Iowa here when 
their constituents testify.


                   summary statement of piper laurie


    We are very pleased to welcome the distinguished, award-
winning actress, Ms. Piper Laurie, nominated for three Academy 
Awards. This is a propitious time to have you here, Ms. Laurie. 
She won a Golden Globe for her role in the television series 
``Twin Peaks,'' an Emmy for the Hallmark Hall of Fame 
production ``Promise.'' She has performed in numerous plays, 
from the ``Glass Menagerie,'' on Broadway, and, more recently, 
the ``Cherry Orchard.''
    We thank you for your interest in helping us focus 
attention on Alzheimer's. And we look forward to your 
testimony. We are asking each witness to limit their testimony 
to 5 minutes. We will have the green light on, amber at 1 
minute and red at stop. And the floor is yours, Ms. Laurie. 
Please proceed.
    Ms. Laurie. Mr. Chairman, members of the committee, thank 
you for inviting me here today to testify about an issue that 
is very important to me, that I know something about on several 
different levels.
    My father, who died 2 years ago from Alzheimer's, developed 
it very late in life. He was blessed, because he did not have 
to suffer through the worst symptoms of the disease. And in a 
strange way, I have lost not one, but two fathers to the 
disease. I began my film career in a film, playing Ronald 
Reagan's teenager daughter, a movie called ``Louisa.'' It was 
my first film. And it was a critical time for me personally and 
professionally.
    Ronald Reagan was so supportive to me. In some ways, he was 
as important to me as my real father. I know that he had a 
genuine fondness for me. But I probably no longer exist in his 
consciousness.
    As an actress, I have played a person with Alzheimer's 
three times. In order to do research, I tried very hard to get 
inside, into the mind, into the feelings of the person with 
Alzheimer's. I went to many, many day care centers, spent days 
there, and nursing homes. I talked to doctors. I spent my time 
eating with the patients, playing games with them. They 
accepted me as one of them.
    I would go home with them and meet with their caretakers. 
And it is never possible to fully understand another human 
being, but I did learn a lot.
    Having Alzheimer's is like waking up from a nap and finding 
yourself on a park bench in a city you have never been to. It 
is being in your home and not feeling that you are home. It is 
that ever-present suspicion that the people who are being kind 
to you and who are just a little bit familiar with you are 
actually strangers. The yearning to find that one familiar 
place, comfortable place that you can trust. And especially in 
the early stages, the constant seeking of approval, the 
tentative speech, the wanting reassurance that you are not 
doing something to embarrass yourself.
    My father was a very dignified man. And he was very proud 
of what he had accomplished, even though he was very shy 
because he had not had much schooling. He had to work in his 
father's bakery.
    Later, he went into the furniture business and became very 
successful. He was very proud of that. In his later years, 
after he retired, he had a routine. He would bound onto his 
exercycle every morning and pedal away for 20 minutes. And, 
finally, when he was 92, the exercycle broke down and he did, 
too.
    For my father, the disease brought many indignities to a 
very dignified man. And then, later on, when he was in a small 
nursing home, even though the children, the grandchildren and 
the great grandchildren would come to visit him, he finally had 
grown so weary of the confusion and the anxiety that he walked 
into the backyard one day, removed all of his clothes and laid 
down on the earth. Someone came up and asked to help him and he 
whispered, ``I just want to go to sleep.''
    Fifteen or 20 years ago, it was a rare occurrence that you 
met anyone who had any connection with Alzheimer's. Now, no 
matter where I go, I always find someone who has a loved one 
who has the disease. The human costs are staggering. We must 
find a cure, to prevent the terror and the indignities of this 
disease.


                           prepared statement


    If I could give a voice to my father and to all of the 
other people I have known who have the disease, if I could 
imagine what they would want me to say to you, it would be 
this: Please, there really is a person here. Listen to my 
feelings. Do not ignore me. Deal with me. Do not forget me. I 
am here.
    Thank you for letting me speak to you today. [Applause.]
    Senator Specter. Thank you very much, Ms. Laurie, for that 
very impressive bit of testimony. We really appreciate your 
being here.
    [The statement follows:]
                   Prepared Statement of Piper Laurie
    Mr. Chairman and members of the Committee. Thank you for inviting 
me to testify today about an issue that is very important to me and 
that I feel I know and understand on many levels. My father, who died 
two years ago, developed Alzheimer's late in life. He was blessed, not 
only because he lived only a few years with the worst symptoms of the 
disease, but also because we found him a wonderful home in Arizona 
where he was well cared for until he died.
    I know this disease because I feel I've lost not one, but two 
fathers to the disease. I began my film career as Ronald Reagan's 
daughter in the movie ``Louisa.'' That was my very first film and it 
was a critical time in my professional development. Ronald Reagan was 
so supportive of me. In many ways, I suppose, he was as important as my 
real father. Now he is lost to this disease, too.
    As an actress I have played the role of a person with Alzheimer's 
in three different productions. One was a television series with George 
C. Scott. Another was in the USA movie ``Road to Galveston.'' And, more 
recently, I have done readings of a new play, a work in progress based 
on the documentary, ``Complaints of a Dutiful Daughter.'' To fully 
understand these roles, I tried hard to ``get inside'' the people who 
have this disease. I spent hours and hours in day care centers and 
nursing homes. I ate meals with the residents. I played games with 
them. They accepted me as one of them. I talked with them and got to 
know their families and their caregivers. While it is never possible to 
fully understand another human being, I did learn a lot.
    Having Alzheimer's disease is like waking up from a nap and finding 
yourself on a park bench--in a city you have never been to--surrounded 
by people you don't know and things you don't recognize. The terror of 
that!
    Alzheimer's is being in your own home but not knowing you are home. 
It is that ever-present feeling of wanting to go home, of searching for 
that safe place. Perhaps this is why so much time is spent packing 
things. The half acted-upon impulses. The constant seeking of approval, 
of reassurance that you haven't done anything to embarrass yourself. 
The wandering. And it is so heart-wrenching that no matter how hard one 
tries, it is not possible to find that place of familiarity and trust.
    I remember a man I met who was a volunteer at a day care center. He 
had nursed his wife with Alzheimer's for 10 or 15 years. They would go 
to bed at night and make love. Then she would turn and look at him and 
scream, ``Who are you? Get out of here!'' The horror and pain of that!
    My father was a dignified man and proud of what he had 
accomplished, even if a little shy about his lack of education. As a 
child, he worked for his father in the bakery business and was unable 
to attend school. He eventually owned his own furniture business, an 
accomplishment he was very proud of. As his mind slipped away during 
his last few years, my father talked a lot about the bakery and 
furniture businesses. These were safe, familiar topics he could grab 
hold of, an anchor to his past that affirmed him as a person.
    For my father, the disease brought horrible indignities to a very 
dignified man. While living at home in a retirement community where he 
fortunately knew most people, he would wander in his pajamas. And then 
later on when he was in a small nursing home in Arizona, he had grown 
so weary of the confusion and anxiety that he walked into the backyard 
one day, removed all of his clothes and lay down on the earth. When 
someone came to help him he whispered, ``I just want to go to sleep.''
    Eventually, my father stopped eating and drinking and only then did 
he find peace.
    Fifteen or twenty years ago it was a rare acquaintance who had any 
connection with someone with Alzheimer's disease. Today, it is 
epidemic. Almost everywhere I go I meet someone who has a parent or 
other loved one with the disease. The human costs are staggering. We 
must do something to end this epidemic. We must find a cure to prevent 
the terror, the indignities of this disease.
    If I could give a voice to my father and to all the people I have 
met who have this disease, if I could imagine what they would want me 
to say, it is this:

    please, there is a person here
    listen to my feelings
    deal with me
    don't forget me
    don't ignore me
    please, I am here * * *

    Thank you for letting me speak to you today.

                    summary statement of orien reid

    Senator Specter. We turn now to Ms. Orien Reid, consumer 
reporter for WCAU-TV in Philadelphia. Ms. Reid has served both 
on the local board of directors of the Alzheimer's Association 
of Southeastern Pennsylvania and currently serves as the senior 
vice chair of the National Board of the Alzheimer's 
Association. Ms. Reid's family has been afflicted by 
Alzheimer's disease, with the death of her mother and uncle 
after a long battle with the disease.
    On a personal note, I have known Ms. Reid for many years. I 
have had the pleasure of being interviewed and questioned by 
her for many years. I am glad to have the chance this morning 
to reciprocate. [Laughter.]
    Ms. Reid, the floor is yours.
    Ms. Reid. Thank you, Senator Specter. Thank you, Senator 
Grassley, Senator Faircloth, for inviting me to testify today 
at this very important hearing.
    I am here to speak not only for my own family and for the 
hundreds of Alzheimer's families gathered in this room today, 
but also for the millions of families like us across the 
country. I serve as senior vice chair of the board of directors 
of the Alzheimer's Association. It is the only national 
voluntary health association which exists to represent the 
interests of persons with Alzheimer's disease and their 
families, and the only association to support research to find 
answers to this horrible plague.
    In my other life, as you mentioned, I am a consumer 
reporter for NBC-10 in Philadelphia.
    Several years ago, I testified before a House committee on 
the impact of Alzheimer's disease on a typical family. That was 
my family, my mother, myself, and my two children. And we asked 
Congress to consider ways to support families, to relieve some 
of the huge financial burden of long-term care. Today I am here 
for a different reason. And that is to ask you to increase the 
appropriations for Alzheimer's research by $100 million this 
year, to launch a major new research initiative to find a way 
to prevent Alzheimer's disease.
    You have two eminent Alzheimer's researchers here to tell 
you about the exciting scientific opportunities that are in 
front of us--opportunities that we will lose if we do not make 
a major investment now. And I would not presume to talk about 
the science, but I can tell you about the urgency of the 
problem the scientists are trying to solve.
    As you mentioned, my mother had Alzheimer's disease. It 
totally devastated me to watch the disease destroy the mind of 
a woman who had counseled eminent leaders, like the late Dr. 
Martin Luther King, Jr., and former Atlanta Mayor Maynard 
Jackson. Shortly after her retirement from Morehouse College in 
Atlanta, GA, I noticed a radical change in my mother's 
personality. She had lost her memory, or was losing her memory.
    This was a woman who had become docile, had become fearful 
and a little less attentive to her appearance. So we lost a 
part of her. It was a shocking change in a woman who had been 
very eloquent, proud, elegant, and she was a graceful woman, 
full of Southern charm and strong determination. In the early 
stages of the disease, I was my mother's long-distance 
caregiver, I living in Philadelphia and she in Atlanta.
    But, finally, I realized I just simply could not let her 
live alone. So with a great deal of adjustment, I brought my 
mother to live with me, into my home, where I cared for her for 
almost 2 years.
    My mother's Alzheimer's disease forced a major disruption 
in my personal and my professional life. And those were 
sacrifices I was willing to make, and would do so all over 
again. But it also robbed my son and my daughter of their 
childhood. It took the money, all of the money, that I had 
saved for their college education, and it left an indelible 
mark on their lives that continues today.
    My children and I are frightened by the prevalence of this 
disease in my family. My maternal grandmother died in 1962, 
with dementia, my mother 30 years later, with Alzheimer's 
disease. And her brother, my uncle, died just last July 4 with 
Alzheimer's disease. Her sister, my aunt, now suffers from the 
disease. And she lives with my cousin, her daughter, in the 
Washington, DC, area.
    My greatest fear is that Alzheimer's disease has already 
started to eat away at my brain, too, and that my children will 
be forced to live this nightmare all over again. And the news 
report just last week about a new study, showing that African-
Americans and Latinos may be at a higher risk of Alzheimer's 
disease does absolutely nothing to ease my mind.
    I am not alone in my fears. There are 14 million baby 
boomers in the United States today who will get Alzheimer's 
disease if you do not find a way to stop it. Scientists tell us 
that Alzheimer's disease does not happen overnight, that it may 
take as long as 20 years for the disease to progress enough and 
to do enough damage, so that symptoms appear. That means that 
many of us already, in this room today, have a time bomb that 
is ticking away in our brains. And you are the only ones to 
prevent the explosion, by supporting the research that will 
find a way to defuse it.
    Now, earlier this month, the Bipartisan Commission on the 
Future of Medicare held its first meeting. The Commission has a 
daunting task ahead of it, as it seeks ways to find a way to 
assure the financial stability of the program into the 21st 
century. The Alzheimer's Association is ready to work with the 
Commission as it looks for affordable ways to meet chronic 
health care needs of Medicare beneficiaries.
    But it is difficult to see how you can save Medicare if you 
let 14 million baby boomers get Alzheimer's disease. According 
to HCFA, Medicare is spending 70 percent more per capita on 
beneficiaries who have Alzheimer's disease, even though 
Medicare does not pay for the long-term care they need.
    I know from my mother's experience what a threat 
Alzheimer's disease poses to the health care system. Medicare, 
of course, did not pay for the long-term care, but it did pay 
for two lengthy hospitalizations that were a direct result of 
her dementia. Alzheimer's disease robbed her of her balance, 
and she fell repeatedly. Once she broke her back. The second 
time she broke her hip. And it was after that second accident 
that she died of a pulmonary embolism.
    Alzheimer's disease will reach epidemic levels in the 21st 
century. We cannot wait until the epidemic hits to try and do 
something about it. By then, it will be too late. That is why 
the Alzheimer's Association will triple its investment into 
Alzheimer's research over the next 3 years. We will do 
everything we can to bring as much private money as we can into 
the search for answers. But we all know it will take the 
resources of NIH to harness this disease.

                           prepared statement

    And so we are asking you to join us in this fight by 
increasing funding for Alzheimer's research by $100 million 
this year. Time is running out. Please, for all of us in this 
room, for your children and your grandchildren, please act now.
    Thank you. [Applause.]
    Senator Specter. Thank you very much, Ms. Reid.
    [The statement follows:]

                    Prepared Statement of Orien Reid

    Thank you very much, Senator Specter, for inviting me to 
testify today at this very important hearing. I am here to 
speak for my own family, for the hundreds of Alzheimer families 
gathered in this room today, and for the millions of families 
like us across the country. I serve as senior vice chair of the 
Board of Directors of the Alzheimer's Association, the only 
national voluntary health association that exists to represent 
the interests of people with Alzheimer's disease and their 
families, and to support research to find answers to this 
horrible plague. In my other life, I work as a television 
consumer reporter for NBC 10 in Philadelphia.
    Several years ago, I testified before a House Committee on 
the impact of Alzheimer's disease on a typical family--my 
mother, myself, and my two children--to ask Congress to 
consider ways to support families and relieve some of the huge 
financial burden of long term care. I am here for a different 
reason today--to ask you to increase appropriations for 
Alzheimer research by $100 million this year, to launch a major 
new research initiative to find the way to Prevent Alzheimer's 
Disease.
    You have two eminent Alzheimer researchers here to tell you 
about the exciting scientific opportunities that are in front 
of us--opportunities we will lose if we do not make a major 
investment now. I would not presume to talk about the science. 
But I can tell you about the urgency of the problem the 
scientists are trying to solve.
    My mother had Alzheimer's disease. It devastated me to 
watch the disease destroy the mind of a woman who had counseled 
imminent leaders like the late Dr. Martin Luther King, and 
former Atlanta Mayor, Maynard Jackson. Shortly after her 
retirement from Morehouse College, I noticed a radical change 
in her personality. She lost her memory. We lost a part of her, 
as she became docile, fearful and a little less attentive to 
details like her appearance. It was a shocking change in an 
eloquent, proud, elegant and graceful woman, full of Southern 
charm and strong determination.
    In the early stages of her disease, I was my mother's long 
distance caregiver--she in Atlanta, I in Philadelphia. Finally, 
I could not let her live alone, so with a great deal of 
adjustment, I brought my mother into my home where I cared for 
her for almost 2 years.
    My mother's Alzheimer's disease forced a major disruption 
in my personal and professional life. Those were sacrifices I 
was willing to make. But it also robbed my son and daughter of 
their childhood, took the money I had saved for their college 
education, and left an indelible mark on them that continues to 
affect their lives.
    My children and I are frightened by the prevalence of this 
disease in our family. My maternal grandmother died with 
dementia in 1962. My mother died from Alzheimer's Disease 30 
years later in 1992. Her brother, my uncle, died from 
Alzheimer's Disease on July 4th of last year. Her sister, my 
aunt, has the disease now and is living with my cousin, her 
daughter, in the Washington, DC area.
    My greatest fear is that Alzheimer's disease has started to 
eat away at my brain too, and that my children will be forced 
to live the nightmare again. The news report last week, about a 
new study showing that African-Americans and Latinos may be at 
higher risk of Alzheimer's disease, does nothing to ease my 
mind.
    I am not alone in my fears. There are 14 million baby 
boomers in the United States today who will get Alzheimer's 
disease, if we don't find a way to stop it. Scientists tell us 
that Alzheimer's disease does not happen overnight--that it may 
take as long as 20 years for the disease to do enough damage 
that symptoms begin to appear. This means that many of us in 
this room today have a time bomb already ticking in our brains. 
And you are the only ones who can prevent the explosion, by 
supporting the research that will find a way to defuse it.
    Earlier this month, the Bipartisan Commission on the Future 
of Medicare held its first meeting. The Commission has a 
daunting task ahead of it, as it seeks to find a way to assure 
the financial stability of the program for the 21st century. 
The Alzheimer's Association is ready to work with the 
Commission as it looks for affordable ways to meet chronic 
health care needs of Medicare beneficiaries.
    But it is difficult to see how you can save Medicare, if 
you let 14 million baby boomers get Alzheimer's disease. 
According to HCFA, Medicare is spending 70 percent more per 
capita on beneficiaries who have Alzheimer's--even though 
Medicare does not pay for most of the long term care they need. 
I know, from my mother's struggle with the disease, what a 
threat Alzheimer's poses to the health care system. Medicare 
did not, of course, help pay for her long term care. But it did 
pay for two lengthy hospitalizations that were a direct result 
of her dementia. Alzheimer's disease robbed her of her balance 
and she fell repeatedly. Once, she was hospitalized with a 
broken back. Another time, with a broken hip. It was shortly 
after the second accident that she suffered a pulmonary 
embolism and died.
    Alzheimer's disease will reach epidemic levels in the 21st 
century. We cannot wait until the epidemic hits to try to do 
something about it. By then, it will be too late. That is why 
the Alzheimer's Association will triple its investment in 
Alzheimer research over the next 3 years. We will do everything 
we can to bring as much private money as we can into the search 
for the answers. But we all know it will take the resources of 
the NIH to harness this disease.
    We are asking you to join us in this fight, by increasing 
funding for Alzheimer research by $100 million this year. Time 
is running out! Please, for all of us in this room, for your 
own children and grandchildren, act now.
    Thank you.

                       remarks of senator harkin

    Senator Specter. I turn now to our distinguished colleague, 
Senator Tom Harkin, of Iowa. Senator Harkin is the ranking 
member of this subcommittee and who has been a real crusader 
and leader on this subject for the 14 years he has been in the 
Senate, and before that in the House of Representatives.
    Senator Harkin.
    Senator Harkin. Mr. Chairman, thank you very much. I 
apologize for being late. I had a doctor's appointment this 
morning I had to make, and so I apologize to our panel for 
being late here.
    But I did want to be here for this panel, especially for 
Bob and Rosemary Cronin, of Iowa. And I welcome you here. And I 
will introduce them in just a second.
    But I just want to say, Mr. Chairman, thank you for your 
strong leadership in this area and in all areas of biomedical 
research. You are here today, all of you are here today, to 
urge an increase in funding by $100 million for next year. 
Well, there is no doubt that you have my support, my total 
support, and that of Senator Specter. And we have put our votes 
where our mouths are. Because the only way that we are going to 
get the kind of support we need is we need your support now and 
your help in getting members of the Congress to help us with 
the money.
    It is nice to say all these wonderful things, that you are 
for all of this. We just got a budget. We just got our budget 
sent down to us. And I do not know what the members of the 
Budget Committee could possibly have been thinking. They assume 
that we are going to spend $1.5 billion more on medical 
research, and yet we did not get one extra nickel in money for 
our committee. You know what that means? That means that if we 
are going to do that, we have to cut things like Head Start 
programs, public health programs, community health centers, 
low-income heating and energy assistance for the elderly and 
the poor, nurses training.
    I would like the members of the Budget Committee to come to 
us and say: Here is what you should cut. And they are not going 
to tell us that. Because every program--we are down to the nubs 
on this thing right now. Every program that this subcommittee 
funds is essential. We have made a lot of cuts in the last few 
years.
    When I was chairman, and later on, after Senator Specter 
became chairman, we made a lot of cuts. We tightened down on a 
lot of programs. And a lot of these programs have not gotten 
the kind of increases that they probably should warrant. And so 
the only way that we are going to get the money for this is if 
the Budget Committee allocates us the money.
    Now, if they do not do that, we are going to have to get 
the money from someplace. You know, people can get up. Senator 
Specter, I know, talked about this earlier. Last year we had an 
amendment--a bill on the floor, a sense of the Senate 
resolution to double NIH funding. It passed 97 to nothing.
    Within 2 months, I think it was, Senator Specter offered an 
amendment. He and I worked together on it. He was the chief 
sponsor of it. It was to just add $1.1 billion to the NIH 
budget for all research, which would have helped us, which 
would have given us some money for Alzheimer's. And he would 
have just taken a one-half of 1-percent-cut in administrative 
costs across the board from every agency. That failed 63 to 37.
    You have got a lot of people who will say: Hey, we are all 
for this. We are all for getting more money for Alzheimer's. 
But every time it comes down to trying to get the money, well, 
they are just nowhere to be found.
    And so we need your help. We need your help in going after 
Members of Congress, both in the Senate and the House, to say 
how important this is, and to say that we have got to come up 
with the money. And it should come from the Budget Committee. 
They should have allocated that money for us. And they did not 
do it.
    Nice language. But there is no extra dollars there. And if 
they want to tell us to cut Head Start, let them tell us that. 
If they want to tell us to cut community health centers, let 
them tell us that, too. But they will not do that.
    So as you can see, I am probably equally as frustrated as 
the chairman sitting next to me. Alzheimer's is on the cutting 
edge right now. You talk about saving Medicare. You want to 
save Medicare? I tell you what. You double the research for 
Alzheimer's in the next 5 years, you will not have to worry 
about Medicare. [Applause.]
    We know that if you just put the onset of Alzheimer's off 
for 5 years, just the onset, we will not have any problems in 
Medicare. And we are very close to finding the interventions 
and the cures for Alzheimer's--very close. But it is not going 
to happen unless we make sure that the researchers have the 
resources to do that. And we cannot continue to rob Peter to 
pay Paul on this. We just cannot continue to do that. We have 
got to find a different source of funding.
    Senator Specter and I have joined forces to try to set up a 
national fund for health research, S. 441. We may have some 
opportunity this year in the tobacco settlement, if we get a 
tobacco settlement. We may have an opportunity there to get 
some money for NIH. And I am hopeful that that will happen.
    But I just urge all of you to put the maximum amount of 
pressure on people here in the Congress to devote the money for 
this, not just to vote for nice language and to vote for sense-
of-the-Senate resolutions, but to actually vote the hard money.
    And I can assure you that there is no one that has fought 
harder for this than our chairman. And he has my full and 
unqualified support in his efforts.

                  summary statement of rosemary cronin

    And if I might, I would just like to welcome Bob and 
Rosemary Cronin, from Dubuque. Bob is 58. And he was diagnosed 
with early onset Alzheimer's in July 1994, at age 54. Since his 
diagnosis, he has had to retire from his job. And because of 
complications, he is almost blind. He is a former college 
professor, who studied in China. He taught languages and 
communications at Loras College in Dubuque. He still lives at 
home.
    Rosemary is working full-time, and is able to adjust her 
schedule to meet Bob's needs. Both Bob and Rosemary have taken 
part in numerous media appearances, and they have been featured 
in local newspaper articles.
    The Mississippi Valley Chapter staff highly recommends them 
as excellent witnesses. They have two children in their late 
twenties who are worried about whether they are at risk also 
for Alzheimer's disease.
    And let me just say, Bob and Rosemary, I thank you very 
much for your courage to get out in front of this. But we need 
more people like you, who are unafraid to step out and say: 
Here are the problems and here is what needs to be done. And I 
just welcome you here to this committee. And, again, thank you 
for your bravery and your courage.
    Mrs. Cronin. Thank you, Senator.
    Senator Specter. Senator Grassley, before we officially 
welcome and turn the microphone over to Mr. and Mrs. Cronin, 
would you care to give a word of introduction?
    Senator Grassley. I already, in my opening statement, 
thanked them for coming. And I think Senator Harkin said it, 
and I would associate my remarks with Senator Harkin's about 
the Cronins.
    Senator Specter. Well, then, there is nothing more to be 
said, Mr. and Mrs. Cronin, before introducing you. I will say a 
word or two anyway. We sympathize with what Mr. Cronin has gone 
through. We note his work as a professor, studying in China and 
teaching languages. Obviously, this disease it is a very tragic 
occurrence.
    The microphone is yours, Mr. Cronin, Mrs. Cronin, and you 
may proceed as the two of you see fit.
    Mrs. Cronin. Thank you, Senator. Thank you for giving us 
the opportunity to speak today.
    As you said, my name is Rosemary Cronin. I am from Dubuque, 
IA. And I am here with my husband, Bob, who has Alzheimer's 
disease.
    It is really ironic that I am the one speaking today, 
because Bob was a professor of speech communication at Loras 
College, in Dubuque, IA, for 23 years. His bachelor's, master's 
and Ph.D., degrees are in English literature, film, drama, and 
speech communication. He is a prize-winning playwright, a 
skilled photographer, and a craftsman, who enjoyed creating 
silver jewelry. His love of gardening is equalled only by his 
passion for classical music.
    Alzheimer's disease has robbed him of his ability to read, 
to write, to operate a computer, to drive a car, and it is 
slowly robbing him of his sight. Bob was diagnosed on the first 
day of summer in 1994. He was 54 years old. He had elected to 
undergo a brain biopsy, a procedure not commonly performed, but 
at that time the only way to obtain a definitive diagnosis.
    Our first reaction was: But he is too young; this is an old 
people's disease, and 54 is not old. What we discovered, 
however, is that although the majority of Alzheimer's patients 
are over 60, an increasingly large number of early onset 
patients are in their thirties, forties, and fifties.
    As we drove home from the University of Iowa Hospital on 
that terrible day, I remember trying to see the road clearly 
enough through my tears, and saying to him: Well, what do you 
want me to tell people? They know you have had the biopsy. And 
Bob's reply was simply: Tell them. Tell them I have 
Alzheimer's. And tell them that I am going to beat it. And so 
we began our fight.
    The first thing we had to do was learn how to spell it. 
[Laughter.]
    Then we began to read everything we could get our hands on. 
We found that the disease was affecting the part of Bob's brain 
that controls vision and spatial skills. But when we told 
people that Bob was losing his sight, their reaction was: Well, 
that is not Alzheimer's, is it? And we slowly began to realize 
that just as we had to educate ourselves about this disease, we 
also had to educate our family and our friends.
    And began searching to find anything that we could do to 
slow the progress of the disease. We began to consider how we 
could get involved in Alzheimer's research. Denise Heinrichs, 
from the Alzheimer's Association, Mississippi Valley Chapter, 
entered our lives as the most wonderful resource person and 
friend. Through her interventions, we were able to enroll Bob 
in an NIH study, knowing that the study would probably not 
directly help Bob, but realizing the importance of the research 
data not only for our children, but also for other Alzheimer's 
families.
    In addition to that first NIH study, Bob has participated 
as a research subject in studies at the University of Iowa, at 
MIT. He was in a clinical trial for acetyl-l-carnitine, which 
produced very positive results for 2 years. And he is now in a 
clinical trial for Aricept.
    Our frustration with all the research and all the tests and 
all the drugs is simply: It is not enough. We want answers now, 
not 20 years from now. We have been committed to research from 
the beginning of our struggle with this disease. And it is the 
only way that we can prevent Alzheimer's from becoming an 
epidemic in the next century.
    So we are here today to urge Congress and the President to 
support a major commitment of resources to new basic and 
clinical research that is focused on prevention. We know the 
heartache that Alzheimer's has caused in our own family. Bob 
has four sisters, all of whom are worried about the genetic 
links to the disease.
    Our children are young adults, trying to start careers, who 
suddenly have the specter of Alzheimer's disease forever in 
their consciousness. They have watched this disease rob their 
father of his career, his sight and his memories. They wonder 
if and when they will get Alzheimer's.
    As we started this fight, we realized how fortunate we have 
been for the help we have received along the way. The 
incredible staff at NIH have made such a difference in our 
lives. So when we read the statistics reporting the NIH's 1997 
budget for cancer research was $3.1 billion and the budget for 
Alzheimer's was $323 million, we wanted to scream and say: Hey, 
wait a minute, we are out here, too, and our families are out 
here. We need help. And we need the research not only to 
continue, but also to increase.
    As we have heard, projections tell us that 14 million 
Americans could have Alzheimer's by the middle of the 21st 
century. And that is so frightening. I cannot honestly 
comprehend the impact of the disease on that many people. And 
that figure only counts the patients; it does not count the 
husbands and the wives and the children and the brothers and 
the sisters.
    From a very personal perspective, I know the physical, the 
emotional and financial struggles that this disease has cost 
our family. We had often said that when our last child 
graduated from college, we would have about 10 years to work 
toward building our retirement fund and planning the last 
stages of our lives. Our daughter graduated from the American 
University here in Washington in May 1994. Bob was diagnosed in 
June 1994. So, instead of 10 years, we had 1 month.
    And perhaps foolishly, we had not gotten around to 
purchasing long-term health care insurance. After all, we were 
still young. And now, although I am able to do so, no insurance 
company will ever let us buy a policy for Bob.
    Senator Tom Harkin put it very clearly in a talk he gave in 
Iowa, which is faced with a rapidly aging population. He said, 
and I quote: ``Caring for 14 million patients by the year 2010 
will bankrupt this country. We are only rearranging the deck 
chairs on the Titanic if we do not put money into finding the 
cure for Alzheimer's disease.''
    I would like to end with a quote from Elizabeth Kubler-
Ross' book ``On Death and Dying.'' She says, and I quote: 
``Learn to get in touch with the silence within yourself, and 
know that everything in this life has a purpose. There are no 
mistakes, no coincidences. All events are blessings to learn 
from.''

                           prepared statement

    Well, I would have to say that Alzheimer's disease is 
indeed a mixed blessing. And if we are to learn from it, we 
need the money for research to find a cure. So we have come 
here today to ask you to spend the money that is needed now. 
Please do not hesitate. The iceberg of ignorance is too costly. 
We need the dollars now. And with these research dollars and 
Bob's spirit, we will beat this terrible disease.
    Thank you. [Applause.]
    Senator Specter. Thank you very much Mrs. Cronin for those 
very strong and emotional words. And thank you, Mr. Cronin.
    [The statement follows:]

             Prepared Statement of Rosemary and Bob Cronin

    Thank you for giving us the opportunity to speak today. My 
name is Rosemary Cronin and I am from Dubuque, Iowa. I am here 
with my husband, Bob, who has Alzheimer's disease.
    Bob was a professor of Speech Communication at Loras 
College in Dubuque, Iowa for 23 years. His bachelors, masters, 
and Ph.D., degrees are in English literature, film, drama, and 
speech communication. He is a prizewinning playwright, a 
skilled photographer, and a craftsman who enjoyed creating 
silver jewelry. His love of gardening is equaled only by his 
passion for classical music. Alzheimer's Disease has robbed him 
of his ability to read, to write, to operate a computer or 
drive a car, and it is slowly robbing him of his sight.
    Bob was diagnosed on the first day of summer 1994. He was 
54 years old. He had elected to undergo a brain biopsy, a 
procedure not commonly performed but, at that time, the only 
way to obtain a definitive diagnosis. Our first reaction was, 
``But he's too young. This is an old people's disease and 54 
isn't old.'' What we discovered, however, is that although the 
majority of Alzheimer's patients are over 60, an increasingly 
large number of early-onset patients are in their 30's, 40's 
and 50's.
    As we drove home from the University of Iowa Hospitals on 
that terrible day, I remember trying to see the road clearly 
through my tears and saying to him, ``Well, what do you want me 
to tell people? They know you've had the biopsy.'' And Bob's 
reply was simply, ``Tell them. Tell them I have Alzheimer's. 
And tell them that I'm going to beat it!'' And so, we began our 
fight!
    The first thing we had to do was to learn how to spell it!
    Then we began to read everything we could get our hands on. 
We found that the disease was affecting the part of Bob's brain 
that controls vision and spatial skills, and that his language, 
memory and social abilities were still relatively intact. But 
when we told people that Bob was losing his sight, their 
reaction was, ``Well, that's not Alzheimer's. Is it?'' And we 
slowly began to realize that just as we had to educate 
ourselves about this disease, we also had to educate our family 
and friends. We also tried to find something--anything that we 
could to slow the progress of the disease.
    Because we were so committed to fighting this disease, we 
began to consider how we could get involved in Alzheimer's 
research. Denise Heinrichs, from the Alzheimer's Association 
Mississippi Valley Chapter, entered our lives as a wonderful 
resource person and friend. Through her interventions we were 
able to enroll Bob in an NIH study, knowing that the study 
would probably not directly help Bob. Nevertheless, we realized 
the importance of the research data not only for our children, 
but also for other Alzheimer families.
    In addition to that first NIH study, Bob has participated 
as a ``research subject'' in studies at the University of Iowa 
and MIT. He was also in the clinical trial for Acetyl-L-
Carnitine for patients between the ages of 45-65, which 
produced positive results for two years. He is now in a 
clinical trial for Donepizil, also known as Aricept.
    Our frustration with all the research and all the tests and 
all the drugs is simple--it's not enough. We want answers NOW, 
not twenty years from now. We have been committed to research 
from the beginning of our struggle with this disease. It is the 
only way we can prevent Alzheimer's from becoming an epidemic 
in the next century. We're here today to urge Congress and the 
President to support a major commitment of resources to new 
basic and clinical research that is focused on prevention. We 
know the heartache that Alzheimer's has caused in our own 
family. Bob has four sisters, all of whom are worried about the 
genetic links to the disease. Our children are young adults 
trying to start careers who suddenly have the specter of 
Alzheimer's Disease forever in their consciousness. They have 
watched this disease rob their father of his career, sight and 
memories. They wonder if and when they will get Alzheimer's.
    As we started this fight--which we certainly never wanted 
to do--we realized how fortunate we have been for the help we 
have received along the way. The incredible staff at NIH have 
made such a difference in our lives. So when we read statistics 
reporting the NIH's 1997 budget for cancer research was $3.1 
billion and the budget for Alzheimer's was $323 million we want 
to scream and say, ``Hey, wait a minute--we're out here, too. 
And our families are out here.'' We need help and we need the 
research not only to continue but also to increase. Projections 
tell us that 14 million Americans could have Alzheimer's by the 
year 2010. That is so frightening.
    I can't honestly comprehend the impact of the disease on 
that many people. And that figure only counts the patients who 
are affected, not the husbands and wives and children and 
brothers and sisters. From a very personal perspective, I know 
the physical, emotional, and financial struggles that this 
disease has cost our family. We had often said that when our 
last child graduated from college we'd have about ten years to 
work toward building a retirement fund and planning the last 
stages of our lives. Our daughter graduated from the American 
University here in Washington in May 1994. Bob was diagnosed in 
June of 1994. So instead of 10 years, we had one month. And, 
perhaps foolishly, we hadn't gotten around to purchasing long 
term care insurance. After all, we were still young. And now, 
although I am able to do so, no insurance company will ever let 
us buy a policy for Bob.
    Senator Tom Harkin put it very clearly in a talk he gave in 
Iowa, which is faced with a rapidly aging population. He said, 
``Caring for 14 million patients by the year 2010 will bankrupt 
this country. We are only `rearranging the deck chairs on the 
Titanic' if we don't put money into finding the cure for 
Alzheimer's Disease.''
    I would like to end with a quote from Elizabeth Kubler-
Ross' book ``On Death and Dying.'' She says, ``Learn to get in 
touch with the silence within yourself and know that everything 
in this life has a purpose. There are no mistakes, no 
coincidences. All events are blessings to learn from.''
    Well, I would have to say that Alzheimer's Disease is, 
indeed, a mixed blessing. And, if we are to learn from it, we 
need the money for research to find a cure. We have come here 
today to ask you to spend the money that is needed now. Please 
don't hesitate. The iceberg of ignorance is too costly. We need 
the dollars now.
STATEMENTS OF:
        STEVEN T. DeKOSKY, M.D., PROFESSOR OF PSYCHIATRY, NEUROLOGY, 
            NEUROBIOLOGY, AND HUMAN GENETICS, WESTERN PSYCHIATRIC 
            INSTITUTE CLINIC, UNIVERSITY OF PITTSBURGH MEDICAL CENTER
        DON SCHMECHEL, M.D., DIRECTOR, JOSEPH AND KATHLEEN BRYAN 
            ALZHEIMER'S DISEASE RESEARCH CENTER, DUKE UNIVERSITY 
            MEDICAL CENTER

                summary statement of dr. steven de kosky

    Senator Specter. I want to turn now to our medical experts. 
First, Dr. Steven DeKosky, professor of psychiatry, neurology, 
neurobiology, and human genetics, Western Psychiatric Institute 
Clinic, and director of the Alzheimer's Disease Research Center 
the University of Pittsburgh Medical Center. His interests 
include the neurochemistry of Alzheimer's disease and the 
underlying cause of memory loss. He is a graduate of Bucknell 
College and the University of Florida Medical School. Dr. 
DeKosky is chairman of the Scientific Advisory Board for the 
Alzheimer's Association. Perhaps his biggest plaudit is that he 
is the father of Allison DeKosky, who is one of my key staffers 
on this subject. [Laughter.]
    I am going to introduce at the same time, Dr. Donald 
Schmechel, the director of the Joseph and Kathleen Bryan 
Alzheimer's Disease Research Center at Duke University Medical 
Center. Dr. Schmechel, a graduate of Yale College and the 
Harvard Medical School, published numerous papers on the 
underlying biology of Alzheimer's disease. Our distinguished 
colleague, Senator Faircloth, is a major, if I may say, multi-
million-dollar contributor to that very important center. I may 
be disclosing more than Senator Faircloth wants me to here this 
morning.
    For those who are standing in the rear, we have chairs in 
the front, quite a number, and you can even take the chairs at 
the witness table without jeopardy. But I think you may be more 
comfortable sitting than standing.
    We are going to turn to you first, Dr. DeKosky. When you 
finish, Dr. Schmechel will be next in line. I have to excuse 
myself for a minute or two, to go into the anteroom. I shall 
return momentarily. Dr. DeKosky, the floor is yours.
    Dr. DeKosky. Thank you, Senator.
    Chairman Specter, Senator Harkin, Senator Faircloth, and 
Senator Grassley, and members of the committee, I am pleased to 
appear before you today to discuss the excitement of 
Alzheimer's research. I direct the Alzheimer's Center at the 
University of Pittsburgh. I sit on the Neuroscience Study 
Section at the National Institute of Aging. And I chair the 
Medical and Scientific Advisory Council of the Alzheimer's 
Association.
    I see patients. I conduct my own research, and I direct a 
team of extraordinary scientists at the University of 
Pittsburgh. And I have had the opportunity to review the work 
of Alzheimer's researchers from across the country, who come 
either to the Alzheimer's Association or to the National 
Institute of Aging for financial support.
    You have already heard about the impact of Alzheimer's 
disease on the lives of people, like Mr. and Mrs. Cronin, and 
the fears about the future from people like Orien Reid. You 
have received the Alzheimer's Association National Program to 
Conquer Alzheimer's Disease, which describes how Alzheimer's 
disease may bankrupt both Medicare and Medicaid.
    What I would like to do is try to describe to you the 
scientific evidence that supports these predictions, and the 
opportunities we have to change the course of the disease for 
the 21st century--opportunities that will disappear if we do 
not seize them now. I will explain the demographic forces that 
are bringing on the epidemic, the extraordinary progress we 
have made in a relatively short period of time that resources 
have been devoted to Alzheimer's research, and the exciting 
possibilities for discovering a way to prevent Alzheimer's by 
slowing or stopping the disease process in baby boomers so that 
many of them will never be disabled by the disease.
    What is the demographic imperative?
    Alzheimer's disease is not normal aging, but it is closely 
associated with age. And that is why estimates of the 
prevalence in the United States of Alzheimer's disease rise so 
sharply during the first half of the next century--growth that 
is a direct result of increased life expectancy in the aging of 
the baby boomer population. This is demonstrated by the charts 
that are appended to my testimony.
    The crisis of Alzheimer's disease is upon us because we are 
living longer. The prevalence of probable AD rises sharply as 
we grow older, from 4 percent of those between the ages of 65 
to 74, to close to 50 percent of those 85 and older. As the 
boomers enter their age of greatest risk, beginning in the 
second decade of the next century, Alzheimer's disease will 
explode, reaching the number that you have heard and talked 
about, of approximating 14 million people by the middle of the 
century.
    These are estimates from Denis Evans. Other demographic 
studies result in somewhat different estimates. Some are 
higher. Some are lower. But every study shows the same 
inevitable course of the disease rising dramatically as the 
population ages. And recent findings indicate that our African 
American and Hispanic citizens have even more frequent 
development of dementia than the white population on whom these 
statistics are based.
    We do not necessarily need to look at these figures with 
alarm. Rather, we should see them as a challenge. We have the 
scientific capability to find a way to change the course of AD. 
We can keep millions of baby boomers ever from suffering from 
Alzheimer's disease, but only if we make a major investment 
now. Let me explain that.
    We have accumulated a great deal of knowledge about AD. No 
area of science today is more exciting or more productive than 
brain research, and especially Alzheimer's research. That is 
not an accident. You in Congress decided, in the early 1990's, 
to make a targeted investment on Alzheimer's. You more than 
doubled the NIH resources, from $127 million in 1989, to $279 
million in 1991.
    Those resources attracted some of the best minds to 
Alzheimer's research. They built an infrastructure for 
cooperative research among more than 30 of the leading academic 
institutions in the country, and they allowed pursuit of 
multiple strategies that have brought us to our current state 
of knowledge. That is why you have seen the steady flow of 
discoveries over the past several years in AD research.
    We now understand the basic mechanisms of AD, how the 
characteristic plaques and tangles of Alzheimer's disease are 
formed by amyloid and tau proteins, and how this causes brain 
cells to die. We are steadily learning more about the genetics 
of the disease. Genes associated with the disease have been 
identified on four different chromosomes in the human genome.
    We now have identified the actual genes, and the mutations, 
or mistakes, in gene code for the rare form of the disease--
early onset familial Alzheimer's. And we have found the 
susceptibility gene, or risk gene, for apolipoprotein E, that 
was alluded to earlier, which opens the door for new scientific 
inquiry about the interactions of genetics in the environment. 
And we are finding, and we will find, more such risk genes, 
which are all clues to disease mechanisms that we turn toward 
therapy.
    Most exciting for all of the families who are confronting 
Alzheimer's disease, we have real leads to potential 
treatments. The two drugs that have been approved by the FDA 
for specific treatment of Alzheimer's are not magic bullets, 
but they are having a modest impact on a small number of 
people. We are also finding effective ways to treat the 
behavior, such as agitation, anxiety, depression, or sleep 
disturbance, that often cause the greatest challenges for 
patients and their families--not just drugs, but nondrug 
therapies, as well.
    The work that holds the most promise for the future is 
beginning to show potential preventive effects of readily 
available treatments, with nonsteroidal inflammatory drugs like 
ibuprofen; antioxidants, like vitamin E; and nerve and growth-
enhancing factors, such as estrogen. Behind all of these 
discoveries is the accumulated knowledge that brings us to 
understand the basic reality of Alzheimer's disease. This was 
not something that happened overnight.
    We know the brain cells deteriorate decades before people 
begin to show clinical symptoms. That means, if we are going to 
stop the disease before the beginning of the next century, we 
have to find a way to intervene before large numbers of cells 
die. This will take a major investment in research on 
prevention, an investment that we cannot make at current levels 
of funding for Alzheimer's research. We know what needs to be 
done.
    At the top of the list, we need to launch large-scale, 
multisite clinical trials in healthy people, on the scale of 
the Women's Health Initiative. These studies need to be done 
over an extended period of time, to determine which therapies 
can delay or prevent onset of disabling symptoms of the 
disease. That is why the studies need to begin now, because 
they take years, and will need to be completed before the baby 
boomers hit the starting edge of the high age at risk.
    We need to speed up efforts to identify risk factors, 
biological markers and reliable tests to find people most at 
risk, before symptoms appear, and permit earlier diagnosis so 
that treatment can begin soon enough to make a difference. And 
we need an infrastructure to develop and make available to the 
scientific community laboratory models of AD, which were 
unthought of 10 years ago, to learn how the disease progresses 
and to test promising therapies without putting humans at risk. 
Incredible advances in our ability to genetically manipulate 
mice to establish models of AD, in which to test medications to 
stop the disease, are a major focus.
    However fast we move toward prevention, for millions of 
Americans the answer will be too late. They have already lost 
too many brain cells to stop the disease. For them, we must 
continue research to develop and demonstrate cost-effective 
methods of care and treatment to prevent excess disability, to 
improve their quality of life, and develop new systems of care 
their families and taxpayers will be able to afford.
    If you want to do something about Alzheimer's disease 
before the baby boomers reach the age of greatest risk, then 
you have to make the investment in prevention now. That is why 
the Alzheimer's Association has made its commitment to triple 
its research investment, from $10 million to $30 million, over 
the next 3 years, and it is why the Association is asking you 
to increase appropriations for AD research at the NIH by $100 
million in fiscal year 1999.

                           prepared statement

    Over the past 5 years, funding for AD research has lagged 
behind funding for NIH in general. If you let this continue, we 
will lose physicians and other scientists to other fields of 
research. Today's window of opportunity for finding preventive 
strategies before the baby boomers hit the age of risk will be 
lost, and we will lose another generation to the ravages of 
this disease.
    Thank you very much. [Applause.]
    [The statement follows:]
              Prepared Statement of Dr. Steven T. DeKosky
    Chairman Specter, Senator Harkin, Members of the Committee. I am 
delighted to appear before you today to discuss the excitement of 
Alzheimer research. I direct the Alzheimer's Disease Center at the 
University of Pittsburgh, sit on the Neuroscience Study Section of the 
National Institute on Aging, and chair the Medical Scientific Advisory 
Council of the Alzheimer's Association. I conduct my own research, 
direct a team of extraordinary scientists at my Center, and have the 
opportunity to review the work of Alzheimer researchers across the 
country who come to the Alzheimer's Association or the NIA for 
financial support.
    You have already heard about the impact of Alzheimer's disease on 
the lives of people like Mr. and Mrs. Cronin, and the fears about the 
future of people like Orien Reid. You have received the Association's 
National Program to Conquer Alzheimer's Disease, which describes how 
Alzheimer's disease may bankrupt Medicare and Medicaid. What I will try 
to do is describe to you the scientific evidence that supports these 
predictions, and the opportunities we have to change the course of the 
disease in the 21st century--opportunities that will disappear if we do 
not seize them now.
    I will explain:
  --The demographic forces that are bringing on the epidemic of 
        Alzheimer's disease;
  --The extraordinary progress we have made in the relatively short 
        time that resources have been devoted to Alzheimer research; 
        and
  --The exciting possibilities for discovering a way to prevent 
        Alzheimer's, by stopping or slowing the disease process in baby 
        boomers, so that many of them will never be disabled by the 
        disease.
                       the demographic imperative
    Alzheimer's disease is not normal aging, but it is closely 
associated with age. That is why the estimates of prevalence in the 
United States rise so sharply during the first half of the next 
century--growth that is the direct result of increased life expectancy 
and the aging of the babyboomers. This is demonstrated in the charts 
attached to my testimony.
    The crisis of Alzheimer's disease is upon us because we are living 
longer. The prevalence of probable Alzheimer's rises sharply as we grow 
older--from less than 4 percent of those between the ages of 65 and 74, 
to over 47 percent of those 85 and older. As the babyboomers enter the 
age of greatest risk, beginning in the second decade of the next 
century, Alzheimer's disease will explode, reaching as many as 14 
million people by the middle of the century. These are the estimates of 
Denis Evans; other demographic studies result in somewhat different 
estimates--some higher, some lower. But every study shows the same 
inevitable course of the disease--rising dramatically as our population 
continues to age. And recent findings indicate that our African-
American and Hispanic citizens develop dementia even more frequently 
than the white population, on which all of these statistics are based.
    We do not need to look at these figures with alarm. Rather, we 
should see them as a challenge--a challenge that we can clearly meet. 
We have the scientific capability to find a way to change the course of 
Alzheimer's disease. We can keep millions of babyboomers from ever 
suffering from Alzheimer's disease--but only if we make a major 
investment now. Let me explain.
              the accumulated knowledge about alzheimer's
    No area of science today is more exciting--or more productive--than 
brain research, and especially Alzheimer research. That is not an 
accident. You in Congress decided in the early 1990's to make a 
targeted investment in research on Alzheimer's disease. You more than 
doubled the NIH resources--from $127 million in 1989 to $279 million in 
1991. Those resources attracted some of the best minds to Alzheimer 
research; they built an infrastructure for cooperative research among 
more than 30 of the leading academic institutions in the country; and 
they allowed pursuit of multiple strategies that have brought us to our 
current state of knowledge. That is why you are seeing the steady flow 
of discovery over the past two years.
    We now understand the basic mechanisms of Alzheimer's disease--how 
the characteristic plaques and tangles of Alzheimer's disease are 
formed by the amyloid and tau proteins, and how this causes brain cells 
to die.
    We are steadily learning more about the genetics of the disease. 
Genes associated with the disease have been identified on four 
chromosomes. We now have identified the actual genes, and the 
mutations, or mistakes in the gene codes, for the rare form of the 
disease--early onset, familial Alzheimer's disease. And we have found a 
susceptibility, or risk gene--apolipoprotein E--which opens the door 
wide for new scientific inquiry about the interaction of genetics and 
environment.
    Most exciting of all for families who are confronting Alzheimer's, 
we have real leads to potential treatment of the disease. The two drugs 
that have been approved by the Food and Drug Administration for the 
specific treatment of Alzheimer's disease are not magic bullets--but 
they are having a modest impact in a small number of people. We are 
also finding effective ways to treat the behaviors such as agitation, 
anxiety, depression, or sleep disturbance, that often create the 
greatest challenges for people and their families--not just drugs but 
non-drug therapies as well. The work that holds the most promise for 
the future is beginning to show potential preventive effects of readily 
available treatments--with non-steroidal anti-inflammatory drugs such 
as ibuprofen, anti-oxidants like Vitamin E, and nerve growth enhancing 
factors including estrogen.
                        the critical next steps
    Behind all of these individual discoveries is the accumulated 
knowledge that brings us to understand the basic reality of Alzheimer's 
disease. This is not something that happens overnight. We now know that 
brain cells begin to deteriorate as much as 20 years before the 
disabling symptoms of the disease appear. That means, if we are going 
to stop this disease, we have to find a way to intervene before large 
numbers of brain cells die. That is going to take a large investment in 
research on prevention--an investment we cannot make at current levels 
of funding for Alzheimer research.
    We know what needs to be done.
  --At the top of the list, we need to launch large-scale multi-site 
        clinical trials in healthy people, on the scale of the Women's 
        Health Initiative. These studies need to be done over an 
        extended period of time, to determine which therapies can delay 
        or prevent onset of the disabling symptoms of the disease. That 
        is why such studies need to begin now--because they take years 
        and will need to be completed by the time the babyboomers start 
        reaching the age of risk.
  --We need to speed up efforts to identify risk factors, biological 
        markers, and reliable tests to find those persons most at risk, 
        before symptoms appear, and to permit earlier diagnosis--so 
        that treatment can begin soon enough to make a difference.
  --We need an infrastructure to develop and make available to the 
        scientific community laboratory models of Alzheimer's disease, 
        to learn how the disease progresses and to test promising 
        therapies without putting human subjects at risk. Incredible 
        advances in our ability to genetically manipulate mice to 
        establish models of AD in which to test medications to stop the 
        disease are a major focus.
    However fast we move toward prevention, for millions of Americans 
the answers will be too late. They have already lost too many brain 
cells to stop the disease. For them, we must continue research to 
develop and demonstrate cost-effective methods of care and treatment--
to prevent excess disability, to improve their quality of life, and to 
develop new systems of care that families and taxpayers will be able to 
afford.
    If you want to do something about Alzheimer's disease before the 
babyboomers reach the age of greatest risk, then you have to make this 
investment in prevention now. That is why the Alzheimer's Association 
has made a commitment in its new strategic plan to triple its 
investment in research over the next 3 years--from $10 million to $30 
million. And it is why the Association is asking you to increase 
appropriations for Alzheimer research at NIH by $100 million in fiscal 
year 1999.
    Over the past 5 years, funding for Alzheimer research has lagged 
behind funding for NIH in general. If you let this continue, we will 
lose scientists to other fields of research, today's window of 
opportunity will be slammed shut, and we will lose another generation 
to the ravages of Alzheimer's disease.
    Thank you.

               prepared statement of senator larry craig

    Senator Faircloth [presiding]. We have been joined by 
Senator Larry Craig.
    Senator Craig, would you care to make a comment or 
statement?
    Senator Craig. Thank you very much, Mr. Chairman.
    No; let us get on with the testimony of our witnesses. I 
would ask unanimous consent that my prepared statement become a 
part of the record.
    Thank you all for being here.
    Senator  Faircloth. Well, certainly, it will be.
    [The statement follows:]

              Prepared Statement of Senator Larry E. Craig

    Mr. Chairman, I want to thank you for holding this hearing 
today on Alzheimer's disease. As you know, Alzheimer's is a 
devastating disease affecting not only the life of the patient, 
but those around them as well. I want to thank all of our 
witnesses for coming here today and sharing their experiences 
with this devastating disease.
    As an adult child with aging parents, I feel quite 
fortunate not to have had to face Alzheimer's disease 
personally. However, the experiences of other family members, 
friends and many of my constituents is very real. The drain on 
family members is both emotional and financial. Therefore, I 
appreciate this Committee's efforts to take a closer look at 
Alzheimer's, and how our health care system is addressing the 
needs of patients and their families. I hope we can gain a 
better understanding of the problems surrounding this disease, 
and act swiftly to help those who suffer today.
    Scientists have made some significant strides in 
researching brain disorders. They have especially made progress 
researching Alzheimer's disease. That gives us hope. We should 
look at all the progress that has been made in this area and 
build on our successes. We should also be aware of the amount 
of work that is left to be done and focus on finding a cure for 
these kinds of diseases.
    Mr. Chairman, Alzheimer's disease depletes human resources, 
causes physical and emotional hardship for care-givers, and is 
a tremendous financial burden on families. Given the 
devastating nature of this disease, it deserves ample attention 
from the Congress.
    I look forward to hearing from today's witnesses and 
discussing ways that we, as a nation, can better address this 
problem in a way that will meet the needs of those who are 
afflicted, and their families.

                 summary statement of dr. don schmechel

    Senator  Faircloth. And now, Dr. Don Schmechel, from Bryan 
Center at Duke University.
    Dr. Schmechel. Thank you, Senator. I appreciate your very 
kind introduction, and the invitation of this committee to 
speak to you.
    I am the director of the Joseph and Kathleen Bryan 
Alzheimer's Disease Research Center at Duke. And this center 
represents an amazing gift from the Bryan family and the 
successful attraction of National Institute of Aging funds--
money well spent in the pursuit of cures and answers for 
Alzheimer's disease, as it is true of the many NIH centers 
across the country.
    We take for granted, really, our ability to remember from 
moment to moment in our thoughts, in our conversation with 
others. It is really amazing to talk to patients and find out 
what it feels like to have memory problems. I remember a 
patient very well, from the early eighties, who I saw. And he 
told me: Having this problem is like seeing a rack of books on 
a shelf. I know the book I want to take, but as I reach out to 
get that book, my hands obscures it and I cannot get it back.
    This is the picture of Alzheimer's disease, a very, very 
serious and tragic illness which everyone here is fighting and 
wants your support in trying to get rid of. I brought you a 
graphic illustration of the effects of Alzheimer's disease on 
the human brain--some brains from the Kathleen and Joseph Bryan 
Alzheimer's Disease Brain Bank. This is an example of a brain 
in advanced stages of Alzheimer's disease, with shrinkage of 
the folds of the brain, and showing the changes that occur 
during Alzheimer's disease. Unseen within are nerve cell loss, 
inflammation and many other things taking place. This is in 
contrast to the brain of a young person, where no such 
shrinkage has occurred, and yet, as other speakers have said, 
there may be genetic and environmental risk of the illness.
    This is very important to take home as a message of the 
severity and the need to answer this illness. We really take 
for total granted our ability to remember. But Alzheimer's 
disease is progressive and disabling, and robs our loved ones 
of their ability to communicate to the rest of their families.
    In the ``Book of Deuteronomy,'' there is a verse that says: 
``Remember and teach these things to your children and 
grandchildren.'' But in Alzheimer's disease, this natural 
expectation of communication from generation to generation is 
taken away. Alzheimer's can strike as early as 50 years, or 
even earlier than that. And then, each decade that goes on 
after that, basically, the rest of us are in the boat of risk.
    The research that you have heard about over the last 20 
years has produced amazing advances--amazing advances. But yet, 
here is where we are at. Look to your left. Look to your right. 
One of the three of you may carry the apolipoprotein E-4 risk 
factor gene, which occurs in about 20 to 30 percent of our 
population. This risk factor gene increases the likelihood of 
Alzheimer's disease in your sixties to eighties, and may well 
interact with other environmental factors.
    The rapid advances in research that you have heard about 
across the United States in the ADRC's and other research 
centers have identified at least five genes and associated 
proteins that affect the genetic risk of Alzheimer's disease, 
and are found in the disease process within the brain. These 
genes are presenilins 1 and 2, amyloid precursor polypeptide, 
apolipoprotein E, and a new gene being sought for on chromosome 
12.
    The last two operate in many of the common AD cases 
occurring after age 50. And, really, as I mentioned to you, are 
really putting most of us in a boat of risk and increasing our 
possibilities of Alzheimer's disease. The day is soon 
approaching where it will be possible to analyze a person's 
individual risk of Alzheimer's disease by looking at their 
genetic makeup and analyzing their environmental risk factors.
    Significant environmental risk factors that have already 
been identified and are being studied include: prior history of 
head injury, lack of estrogen after menopause. Factors that 
actually decrease your risk may include having arthritis, using 
arthritis medications, or using estrogen after menopause.
    It is clear that there are a finite number of genetic 
factors and a finite number of environmental factors that 
interact to produce risk of Alzheimer's disease. It is really 
imperative that research money be spent to deal with this 
problem, both to continue what is going on now and to move 
further.
    It is very clear to me that the genetic risk and the 
disease process may well begin when the brain still looks like 
this, in early- or mid-adult life. And it is very important to 
be looking at this issue of early identification and treatment 
of this illness.

                           prepared statement

    I had more prepared remarks that if I may ask could be put 
into the record. I can only say amen to the Cronin family's 
testimony about the need for more research money and support 
for this illness.
    Thank you very much. [Applause.]
    [The statement follows:]

             Prepared Statement of Dr. Donald E. Schmechel

    Good morning. I appreciate the opportunity to present you 
with a perspective on Alzheimer's Disease from the viewpoint of 
a clinician and researcher. We take for granted our ability to 
remember and to organize our life from moment to moment in our 
thoughts, in our conversation with others, in our reading, 
watching events, doing things. This last Thursday, I had a 
patient 84 years old who told me that he had stopped taking all 
of his medicines because he was healthy and had no physical 
problems. The wife and family of this patient told a sad story 
of his behavioral change with irritation and his severe 
problems with memory. Both behavior and memory problems had 
gradually developed over the last one to two years. Physically, 
this patient appeared hale and hearty; but on questioning 
quickly proved to be disoriented and incapable of retaining 
verbal information. This is the picture and tragedy of 
Alzheimer's Disease. At this and later stages of illness, the 
human brain progressively shrinks and atrophies as in this 
example from an autopsy of an AD patient (hold up example) 
compared to the brain of a normal, non-demented individual 
(hold up example).
    The degree of obvious tissue shrinkage and the underlying 
nerve cell loss, inflammation and damage seen in the AD patient 
are not tolerated well by the brain, a sensitive organ with 
non-renewable resources in adulthood. This progressive and 
disabling disease robs persons of their wisdom and counsel and 
tremendously impairs and disables family life from the burden 
of care giving. In the Book of Deuteronomy, scriptures looked 
to by Christianity, Judaism, and Islam, the verses say 
``Remember and teach these things to your children and 
grandchildren''. Alzheimer's disease takes away this natural 
human expectation of contact and communication between 
generations. Alzheimer's disease (AD) can strike as early as 50 
years of age in certain persons at great genetic risk and in 
increasing numbers of other persons in each successive decade.
    The government, private sector and industry sponsored 
efforts in Alzheimer's Disease Research over the last 20 years 
has yielded great advances in diagnosis, evaluation, and 
treatment, but has also revealed the true immensity of this 
health problem. Look to your left. Look to your right. Either 
yourself or one of your neighbors probably bears at least one 
copy of the Alzheimer Disease risk factor gene, apolipoprotein 
E4, which increases likelihood of AD in the ages 60-80, and 
likely interacts with one or more environmental factors. This 
gene may influence 50 percent of late-onset AD cases. Other 
genetic factors are being discovered also.
    This normal apolipoprotein E (APOE) gene exists in three 
``forms'' APOE2, 3, and 4 in humans. Since we each carry two 
copies, there are six possible genetic combinations. These 
combinations are APOE4/4, APOE3/4, APOE2/4, APOE3/3, APOE2/3, 
and APOE2/2 with one copy is inherited from mother and one 
copy, from father. The relative abundance of these forms in the 
human population is such that 2 percent of persons are APOE4/4 
(high risk of AD) and 20-30 percent of persons have at least 
one APOE4 copy (APOE4/4, APOE2/4, APOE3/4). The rapid advances 
in AD) have identified at least 5 genes and associated proteins 
that affect the genetic risk of AD and whose protein products 
are involved in the disease process in the brain. These genes 
are presenilins 1 and 2, amyloid precursor polypeptide, 
apolipoprotein E and a probable gene on chromosome 12. The 
first three genes convey absolute risk of developing AD for the 
rare autosomal dominant genetic forms (less than 120 families 
worldwide). The last two operate in many of the more common AD 
cases occurring after age 50-60 and convey an increased, but by 
no means total, risk of developing AD. The effects of these 
genetic risk factors for late-onset AD are now evident in the 
aging population of our century and will be in the next as more 
and more of the population lives into age-ranges untouched by 
most persons before 1900.
    The day is soon approaching where analysis of a person's 
individual risk of AD may be determined by inventory of the 
person's DNA (blood sample or even tissue smear from the inside 
of the cheek) for AD related genes and inventory of 
environmental risk factors. At present, there is no 
recommendation for genetic analysis of pre-symptomatic persons 
since there is no curative treatment available and no easily 
applied biological markers of disease activity or progression.
    Significant environmental and non-genetic factors may also 
interact to determine why one person, for example, a high-risk 
APOE4/4 develops Alzheimer's Disease while another person is 
untouched. Factors associated with increased risk may include 
prior serious head injury, estrogen lack through early 
hysterectomy or menopause without estrogen replacement. Factors 
associated with decreased risk include the presence of 
significant arthritis and/or the use of certain medications 
such as non-steroidal anti-inflammatory agents or H2 blockers, 
and apparently the use of estrogen replacement in post-
menopausal women. Current research makes clear that a definite 
number of genetic factors that are inherited and non-
controllable at present interact with a definite number of 
environmental factors to result in Alzheimer's Disease in a 
given person. We are, therefore, far from done with the problem 
of AD despite these amazing successes of the past 20 years. In 
fact, the challenge posed by our knowledge is immense.
    Studies of families at high genetic risk, the well-
popularized study of nuns and their earlier writing 
performance, ongoing studies of the epidemiology of large 
populations (genetically defined for research purposes, of 
course, anonymously), patients with Down's syndrome suggest 
that the AD disease process may well begin in early adulthood 
as a silent process. At these stages, there may be only subtle 
physiologic or mental changes. These changes are undetectable 
at present by isolated test measurements such as brain scan, 
PET scan, neuropsychological testing of a single individual.
    The normal brain that I showed you initially could well 
represent the brain of someone at genetic or environmental 
risen of AD with silent brain injury occurring in a similar 
manner to silent atherosclerosis or heart disease. This person 
might be already on a path towards ultimately developing 
clinically obvious AD later in life. That person could be you, 
or the person to your right or the person to your left.
    Increased research funding aimed at early detection and 
treatment of AD is essential to supplement the ongoing research 
and treatment programs directed at persons already well into 
the disease process. Such research requires a synergistic 
effort between government, private funding, and pharmaceutical 
and industrial sources to address the many different levels of 
AD research--basic science, clinical detection, behavioral 
therapy, family support, treatment, and so on. This effort will 
be fruitful and timely given the present state of the field and 
a cost-effective and rational response to the healthcare crisis 
and Baby Boomer challenge.

                                symptoms

    Senator Specter [presiding]. Thank you very much, Dr. 
Schmechel. Your full statement will be made a part of the 
record.
    We are now going to go to questions, 5-minute rounds by 
members. And let me begin with you, Mrs. Cronin.
    One of the things that so many people are apprehensive 
about is the onset of Alzheimer's and what symptoms and warning 
signs there may be. There is a lot of concern, a lot of 
interest about President Reagan's onset of Alzheimer's, as to 
when it first started, whether it had any impact on his term in 
the White House.
    Are there any insights that you could share with us as to 
what happened to your husband, Bob, as to when you first 
started to see perhaps only incipient signs of the disease, 
when you first became aware of it?
    Mrs. Cronin. Bob has been an absent-minded professor for 25 
years. [Laughter.]
    So it is a little difficult, because he never remembered 
things.
    Senator Specter. He smiles a lot, Mrs. Cronin. When you 
called him an absent-minded professor, he broke into a big grin 
here. [Laughter.]
    Mrs. Cronin. For Bob, his case is a little atypical because 
of the visual variant of the disease process. He first noticed 
it in a classroom, where he had taught the class for 20 years, 
and suddenly could not remember and could not continue the 
class. The class was delighted. They were dismissed early. But 
it sent a warning to him.
    I think my first notice of it was erratic driving, to the 
point where we had a little discussion and I said: I will not 
drive with you anymore and I will not be in the car with you 
when you drive.
    Because of the way the disease is presenting itself with 
Bob, it was very difficult. Because he has lost his sight and 
not the memory, per se, or not the ability to communicate or to 
speak. So it varies. Every family faces this in a different 
way.
    How you notice it, I think, with the memory loss or the 
word loss--he can still talk and still can communicate very 
well, but it was the other parts.
    Senator Specter. Ms. Piper Laurie, along the same line, you 
prepared to play the role of an Alzheimer's patient, as I am 
told, by living among actual patients. I would be interested in 
two aspects of the work which you have done and the serious 
study which you undertook, not on a casual way, but really 
trying to get inside the problem.
    What, in your opinion, represent the patients' experiences, 
as you understand it. What is the family reaction to this slow 
process of disintegration, with the person being there 
physically but not emotionally or recollective wise or 
psychologically?
    Ms. Laurie. There is an overriding charmingness to many of 
the patients. They are reaching out constantly. But I remember 
one woman, who was in her late forties, who had been caring for 
her mother for 15 years. She had given up any chance of having 
any kind of personal life. She did not know any men. And all 
she could see, really, was taking care of her mother until her 
mother died.
    I do not know if I am really answering what you want to 
know.
    Senator Specter. Well, I think you are on track. Of course, 
you had the experience with your own father. You described 
President Reagan as a second father. Have you seen him in his 
state of decline?
    Ms. Laurie. Only from a great distance. I had the great 
pleasure of knowing him before there was any, I am sure, 
suspicion or any reality of the disease taking hold.
    Senator Specter. Dr. DeKosky, before my time runs out, you 
described the difficulties of analysis with large-scale 
clinical trials. This subcommittee has been pushing NIH to do 
more on clinical trials. Could you expand upon your thinking as 
to what we might do in a professional, scientific manner with 
your medical advice to stimulate more clinical trials by NIH on 
this important subject?
    Dr. DeKosky. The nature of prevention versus treatment is 
the same as when Ben Franklin made his comments about an ounce 
of prevention being worth a pound of cure. We work with 
patients who have manifest disease, because that is the 
standard model in which our physicians are taught to deal with 
disease. The difference is that if we look back at the public 
health advances which have made the most difference in the 
United States, and in fact in most of the world, they center on 
issues that relate to preventive medicine.
    In the case of Alzheimer's disease, we will need to start 
with people who are normal, who are not having any 
manifestations. And we will have to follow them, large numbers 
of them, long enough, with some particular medication, and 
compare the incidence of Alzheimer's disease in people who take 
the medication versus those who do not. This is essentially 
what is happening in the Women's Health Initiative.
    And we have never done trials like that for this. And 
because we first need to identify people at risk, it will take 
large numbers of people to do it. There is no money in the 
budget at this point to do this. We would literally have to rob 
Peter to pay Paul to be able to afford trials like this. They 
are expensive.
    And one of the other problems is they do not fit well into 
the research mode of grants that go to the National Institutes 
of Health. That is why WHI, for example, is in a different kind 
of grant funding than standard peer review. Standard peer 
review is a 3-year, 4-year, or perhaps 5-year program. These 
studies are going to take longer than that. If we need a series 
of three or four that take 15 years, we are into the period 
already of maximum risk for patients.
    Senator Specter. I would like to yield now to my colleague, 
Senator Faircloth.
    Senator Craig has joined us, as well. We have another 
hearing. This is a constant problem--a transportation hearing. 
Mayor Rendell is testifying in an adjacent room, which I am 
going to have to excuse myself for. So, Lauch, if you will take 
your 5 minutes and then yield to Larry, I would appreciate it.
    Senator Faircloth [presiding]. Thank you, Mr. Chairman. I 
will, Mr. Chairman. I would be happy to do it.
    Dr. Schmechel, when was Alzheimer's first identified as a 
disease? The reason I ask the question is Mrs. Bryan began to 
have problems in the early seventies. And there was really no 
identification of it. So when was Alzheimer's as a disease 
recognizable as such?
    Dr. Schmechel. That is an excellent question, Senator. 
Basically, the disease was first described by scientists at the 
turn of the century. But in terms of being practically out 
worked in clinics and doctors making that diagnosis, it is 
really only as the Nation is aging and these efforts have begun 
that that has become better. But we are still at a point of 
sometimes underdiagnosing or misdiagnosing the illness.
    And just to further illuminate that issue, most likely this 
illness has a silent phase for a period of time. So that the 
person is able to be normal until finally they have a problem, 
at age 65, 75, 80.
    Senator  Faircloth. That really was not my question. At 
what point did hospitals identify a patient with dementia as 
having Alzheimer's?
    Dr. Schmechel. There were cases described in 1909, 
basically. But these days, for a period of time in the fifties 
and sixties, many patients were diagnosed as having hardening 
of the arteries or other diagnoses. I really think it is with 
the Institution of the National Institute of Aging Program, 
where diagnostic criteria were formulated, that then it is a 
regular diagnosis, Alzheimer's disease, when it is properly 
looked for. So it is very recent, really, in that context.
    Senator  Faircloth. A lot of people were misdiagnosed and 
exposed to shock treatment and all sorts of things that 
certainly did not help and probably made it worse.
    The genetic connection, how traceable is that?
    Dr. Schmechel. Well, we could literally go through this 
room right now and find out which people have apolipo 4, which 
is a risk factor. But we underline that it is a risk factor; 
therefore, we and others do not recommend anyone being tested 
when they have no symptoms.
    And there is a continuing--being worked out, whether this 
is helpful, once you have the disease, to help in differential 
diagnosis. But we are rapidly approaching a time, which is why 
these research funds are needed, that we will be able to read 
your genetic risk, look at what you have been exposed to--a 
head injury, whatever--and really be able to come up with an 
idea of what your risk is and what you should do about it.
    Senator  Faircloth. In your testimony, Doctor, you 
mentioned the role of the private sector as an important 
contributor to Alzheimer's disease research. And of course, 
certainly, that is what the Bryan Center is. What are the 
opportunities and the limits of an expanded private sector 
role?
    Dr. Schmechel. My personal feeling, which is in my 
testimony, is that there needs to be a synergy and a 
cooperation between private resources, the National Institute 
of Aging and Government sources, and industry and 
pharmaceutical firms. I have just entered on the board of the 
Eastern North Carolina Alzheimer's Disease Association. And I 
think their efforts, and the efforts of these people here, are 
extremely important in terms of getting everything to function 
together. And that would be my comment, sir.
    Senator  Faircloth. Back to this gene tracing. As you know, 
Kathleen Bryan was my mother-in-law.
    Dr. Schmechel. Yes.
    Senator  Faircloth. And she very, very, very slowly drifted 
into Alzheimer's. It was a slow process. And she really went 
down in the last 3 or 4 years of her life. And she died at 84. 
You say this gene would only identify a genetic link--what does 
having the gene mean about your risk for the disease?
    Dr. Schmechel. The risk for someone carrying an apolipo E4, 
which is 1 out of 50 of us, is probably somewhere between 5 to 
10 to 15 times that of some of the other common genes. So it is 
really a high risk, but it is not absolute. There are well-
known cases of people making it through their seventies and 
eighties without.
    That risk factor probably interacts with whether you had 
estrogen, maybe you had a head injury--some other factors. 
There are certainly other genes that will come on. And so, in 
an individual case, that is where the research efforts are 
needed, to bring not just a general impact on the genetics, but 
the ability to allow a physician to look at an individual 
patient and say: What is your risk? What do you need to do 
about it? What are the factors we need to consider right now if 
you have a memory problem? And hopefully, soon the day, so that 
before someone has a memory problem they can be properly 
protected and treated to avoid it.
    And that is the research effort at the Bryan Alzheimer's 
Disease Center, and across the country, in the other ADRC's.
    Senator  Faircloth. Thank you, Dr. Schmechel.
    Dr. Schmechel. Thank you.
    Senator  Faircloth. I cannot help but think that Mr. Bryan 
lived to be 99 and 4 months, and his brain was absolutely sharp 
2 days before he died.
    Dr. Schmechel. Indeed, that was so, sir.
    Senator  Faircloth. Thank you, Mr. Chairman.
    Senator Specter [presiding]. Thank you very much, Senator 
Faircloth.
    Senator Craig.
    Senator Craig. Thank you very much, Mr. Chairman.
    I missed most of your testimony. I have it, and I will read 
it. Because this is an issue of concern to me both personally 
and for our Nation. Obviously, I am one who has experienced, as 
many of us have, either a loved one or a personal friend who 
developed Alzheimer's and, as a result of that, died and placed 
the hardship on his loved ones or her loved ones and their 
families. I went through that with a personal friend, and it 
was a very tragic affair.
    I witnessed with this man, though, something. And I want to 
ask this of both of the doctors, and you can respond 
accordingly. He, when he was diagnosed with Alzheimer's, 
declined very rapidly, from what appeared to be a very bright 
and alert person to one who declined rapidly and was dead 
within a period of a couple of years from the time it was 
diagnosed. And there are others who linger a great deal longer 
than that.
    Are there different types of or different ways in which 
Alzheimer's impacts the individual as it relates to how they 
react to the disease itself? Either of the doctors, or both of 
you, with your experiences.
    Dr. DeKosky. There are two major ways that the disease 
varies. The first is how it presents, and the sequence of 
symptoms that people have. Most commonly, people begin to lose 
short-term memory first. Then they begin to have problems 
recalling the names of objects or recalling exactly what they 
want to say--the analogy that Dr. Schmechel used, with reaching 
for a book, but not being able to pull it out. In fact, they 
have trouble accessing their word dictionary.
    After that, they begin to have problems usually with more 
speech understanding, and then directions, getting lost in 
space. We know, from where the disease spreads in the brain and 
where it moves, that that logical sequence is usually 
reflective of the brain change. Sometimes people will present 
with different kinds of symptoms, as did Mr. Cronin. Sometimes 
people will present with socially inappropriate behavior. They 
will present with social withdrawal. They will begin having 
delusions or paranoia. And then, only later, when the memory 
loss comes, that makes everyone think: Oh, this is probably an 
atypical presentation of AD.
    So there are variations in the presentation. That has been 
a problem with diagnosis. We now know that about 75 percent of 
cases present typically enough that any physician should be 
able to make the diagnosis.
    The other major variation is what you saw in your friend. 
And that is with the rate of decline. It is not uncommon to see 
people, especially earlier onset, cases in their fifties and 
sixties, who will decline very rapidly. In those cases, if you 
look in the brain, they have a relatively rapid loss of some of 
the neurotransmitters that let cells communicate. We do not 
know exactly why, but we are able to identify these subgroups.
    Almost surely it has to do with their genetic endowment and 
what particular weak links we have, as far as fighting the 
disease is concerned, and probably and as yet unknown 
environmental influence on what has happened to them.
    Senator Craig. Doctor, do you wish to add to that?
    Dr. Schmechel. Just to say, and agree, that there is quite 
a lot of variability in clinical course, so that we have cases 
that go from 3 to 5 years, up to 25 years, of disease 
progression. And obviously these factors impact on that.
    It is important for the physician to always look for 
factors that may help that individual patient to exclude other 
diagnoses and to continually treat that patient very carefully. 
There is a family of Alzheimer's-like diseases, because of 
these different genes. And there is both a grouping and a 
separation as we look at these illnesses. Twenty-five percent 
of Alzheimer's cases may have seizures at some point. And 
sometimes strokes or other illness also correspond and come 
into the clinical picture.
    Senator Craig. Again, probably this is directed to both of 
the doctors. Obviously, the competition for dollars here at 
this level is great. And we understand that. And it is our job 
to sort that out and to distribute or appropriate where 
collectively the Congress, by majority, can and does place that 
money. And of course we would like to invest in a way that 
bring immediate results. We know that in the case of clinical 
research, that just is not true. And in rather amazing kinds of 
research, from the standpoint of the intricacies of this 
disease, that is not going to happen.
    But could you give us some indication, based on where we 
are in medicine and diagnosis and understanding today based on 
what we have done, what is necessary to be done and over what 
timeframe it is reasonable? Now, obviously, no one holds 
anybody to this. I am just curious about where we need to go 
and how much we need to invest, and what might be based on what 
we now know to be a reasonable outcome. Because obviously we 
would like to turn the lights on, have this solved, and have 
the ability to diagnosis or to move in a preventive way very 
quickly.
    That will not happen. But could you give us some reasonable 
realities based on the dollars and cents involved?
    Dr. DeKosky. The prevention trials that need to begin, that 
have a longer time base than the traditional----
    Senator Craig. And, Doctor, you said these had not in any 
way begun? These are standard clinical procedures that would 
necessarily need to be done to move down the path toward 
resolution of this?
    Dr. DeKosky. Yes; that is correct. The studies have moved 
from the kind that we are doing now, with pharmaceutical 
companies, in collaboration with the NIA centers, at the NIH's 
request, to leverage the cooperation in studying the disease, 
from purely treatment of the cognitive symptoms, the acute 
cognitive symptoms, to studies of patients with Alzheimer's 
disease who already have the disease, giving them the first 
medications, to try and slow their progression.
    Right now, I can tell you one study you probably heard 
about, the study looking at vitamin E, trying to slow the 
progression in people who have the disease, and in that first 
trial, trying to slow the progression, we slowed things down by 
about a year, depending on the kinds of ways you do the 
analyses.
    Two major studies underway now to slow the progression: one 
on estrogen and one on prednisone. Both of those drugs are off 
patent. Both of those studies are being done by the National 
Institute of Aging's Alzheimer's Disease Study Consortium that 
you have funded. And both of them are funded, by the way, under 
a cooperative agreement. They do not come under the standard 
peer review system, because the grant time is too short to be 
able to do those studies.
    So we move from symptomatic treatment to slowing the 
progression in people who have AD, and then back to where we 
will make our major effect--using the drugs we find that can 
slow progression, and giving it to people at risk, so that the 
disease either never emerges or we back up its emergence until 
they are 80 or 90 or 100.
    Senator Craig. Do you wish to add to that, Doctor?
    Dr. Schmechel. I would just say that I feel there needs to 
be a healthy, but not luxurious--but underline ``healthy''--
supply of money, so that these different research theories can 
all proceed in parallel and there not be wasted time. There is 
much research needed for the cognitively/slightly impaired 
thing of the consortium. We work with transgenetic mice so that 
every time you do a mouse like that, it takes $800,000, 
basically, to create a new one. People are marrying the 
different mice together--the APP versus apolipo E, to look at 
what happens to mice. And already very exciting developments 
are occurring.
    Those efforts are needed, because you may identify 
something in those models that allows you to change what you do 
in the clinic. Health care delivery and our ability to screen 
and deal with the actual illness as it now is, is also urgently 
needed. And more funds are also needed there.
    These efforts need to occur in parallel, so they are not 
competing with each other.
    Senator Craig. Mr. Chairman, thank you.
    Thank you, ladies and gentlemen.
    Senator Specter. Thank you very much, Senator Craig.
    There are so many more things we could talk about, but we 
have another lengthy panel and we have to conclude our hearings 
by 5 minutes of 12. As a final comment, Ms. Reid--we have not 
had a chance to dialog too much with you--as a communicator and 
television personality, would you give us the benefit of your 
thinking on how we can better acquaint the American people with 
the problems of Alzheimer's?
    Ms. Reid. I think the Alzheimer's Association is one of the 
ways that we try to get the word out and we try to educate the 
public. But I think also a commitment and a hearing like this, 
a commitment from Congress to focus on the problem. And as we 
hear more about the research into Alzheimer's disease, that, I 
think, is enough to get the word out to the public and 
communicate the need to find an answer to this disease.

                         conclusion of hearing

    Senator Specter. Thank you very much, Ms. Reid. Thank you 
all, ladies and gentleman for being here. We are now going to 
move to the second panel. That concludes this hearing. The 
subcommittee will stand in recess subject to the call of the 
Chair.
    [Whereupon, at 10:45 a.m., Tuesday, March 24, the hearing 
was concluded, and the subcommittee was recessed, to reconvene 
subject to the call of the Chair.]