[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.]