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74–574 PDF 2002

S. HRG. 107–293

ALZHEIMER’S DISEASE, FISCAL YEAR

2002

HEARING

BEFORE A

SUBCOMMITTEE OF THE 

COMMITTEE ON APPROPRIATIONS 

UNITED STATES SENATE

ONE HUNDRED SEVENTH CONGRESS

FIRST SESSION

SPECIAL HEARING

APRIL 3, 2001—WASHINGTON, DC

Printed for the use of the Committee on Appropriations

(

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

COMMITTEE ON APPROPRIATIONS 

TED STEVENS, Alaska, Chairman 

THAD COCHRAN, Mississippi 

ARLEN SPECTER, Pennsylvania 

PETE V. DOMENICI, New Mexico 

CHRISTOPHER S. BOND, Missouri 

MITCH MCCONNELL, Kentucky 

CONRAD BURNS, Montana 

RICHARD C. SHELBY, Alabama 

JUDD GREGG, New Hampshire 

ROBERT F. BENNETT, Utah 

BEN NIGHTHORSE CAMPBELL, Colorado 

LARRY CRAIG, Idaho 

KAY BAILEY HUTCHISON, Texas 

MIKE DEWINE, Ohio 

ROBERT C. BYRD, West Virginia 

DANIEL K. INOUYE, Hawaii 

ERNEST F. HOLLINGS, South Carolina 

PATRICK J. LEAHY, Vermont 

TOM HARKIN, Iowa 

BARBARA A. MIKULSKI, Maryland 

HARRY REID, Nevada 

HERB KOHL, Wisconsin 

PATTY MURRAY, Washington 

BYRON L. DORGAN, North Dakota 

DIANNE FEINSTEIN, California 

RICHARD J. DURBIN, Illinois 

TIM JOHNSON, South Dakota 

MARY L. LANDRIEU, Louisiana 

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 

JUDD GREGG, New Hampshire 

LARRY CRAIG, Idaho 

KAY BAILEY HUTCHISON, Texas 

TED STEVENS, Alaska 

MIKE DEWINE, Ohio 

TOM HARKIN, Iowa 

ERNEST F. HOLLINGS, South Carolina 

DANIEL K. INOUYE, Hawaii 

HARRY REID, Nevada 

HERB KOHL, Wisconsin 

PATTY MURRAY, Washington 

MARY L. LANDRIEU, Louisiana 

ROBERT C. BYRD, West Virginia 

(Ex officio) 

Professional Staff 

BETTILOU TAYLOR

MARY DIETRICH

JIM SOURWINE

ELLEN MURRAY (Minority)

Administrative Support 

CORREY DIVINEY

CAROLE GEAGLEY (Minority) 
(III)

C O N T E N T S 

Page

Opening statement of Senator Arlen Specter ........................................................ 1

Opening statement of Senator Tom Harkin .......................................................... 2 

Prepared statement .......................................................................................... 4

Statement of Hon. Edward J. Markey, U.S. Represenative from Massachusetts ....................................................................................................................... 5 

Prepared statement .......................................................................................... 8

Statement of Hon. Christopher H. Smith, U.S. Representative from New 

Jersey .................................................................................................................... 9 

Prepared statement .......................................................................................... 10

Statement of Dr. Richard J. Hodes, Director, National Institute on Aging, 

National Institutes of Health, Department of Health and Human Services .. 14 

Prepred statement ............................................................................................ 16

Prepared Statement of Senator Harry Reid .......................................................... 27

Statement of Steven T. DeKosky, M.D., professor of neurology, psychiatry, 

neurobiology and human genetics, and director, Alzheimer’s Disease Center, 

University of Pittsburgh Medical Center ........................................................... 28 

Prepared statement .......................................................................................... 30

Statement of Christine Frey, advocate, Alzheimer’s Association ........................ 33 

Prepared statement .......................................................................................... 35

Statement of John Wagenaar, patient, Alzheimer’s disease ................................ 36 

Prepared statement .......................................................................................... 38

Statement of David Hyde Pierce, advocate, Alzheimer’s disease ........................ 39 

Prepared statement .......................................................................................... 41

(1)

ALZHEIMER’S DISEASE, FISCAL YEAR 2002

TUESDAY, APRIL 3, 2001

U.S. SENATE,

SUBCOMMITTEE ON LABOR, HEALTH AND HUMAN

SERVICES, AND EDUCATION, AND RELATED AGENCIES, 

COMMITTEE ON APPROPRIATIONS, 

Washington, DC. 

The subcommittee met at 9:32 a.m., in room SH–216, Hart Senate Office Building, Hon. Arlen Specter (chairman) presiding. 

Present: Senators Specter, Craig, Harkin, and Reid. 

OPENING STATEMENT OF SENATOR ARLEN SPECTER

Senator SPECTER. Ladies and gentlemen, the appropriations subcommittee on Labor, Health and Human Services, and Education 

will now proceed, the hour of 9:30 having arrived. 

The subcommittee has scheduled this hearing to coordinate with 

the 13th Alzheimer’s Association Public Policy Forum. This hearing 

will kick off the Association’s Capitol Hill Day. 

This is a terrifying illness, as we all know; one where Senator 

Harkin and I, as ranking and chairman of the subcommittee, have 

been very anxious to increase funding as substantially as we can. 

During the course of the last four appropriations cycles, we have 

taken the lead on this subcommittee, Senator Harkin and I, in 

moving forward to increase the funding in the National Institute 

of Health by some $8 billion, from $12 billion in fiscal year 1995 

to now more than $20 billion. And it is our hope, this year, to add 

an additional $3,400,000,000 to National Institute of Health funding to move toward the stated goal of doubling the NIH budget 

over the course of 5 years. That funding for NIH has had a very 

marked impact on the funding for Alzheimer’s disease. 

Since 1996 the budget has risen from $308 million to $520 million this year. And we hope to reach a figure of almost $583 million 

for fiscal year 2002. This increase in funding is in response to a 

tremendous problem in America today. The statistics show that 

there are some 4 million Americans with Alzheimer’s, and that figure will increase by 50 percent to about 6 million by the end of this 

decade. If projections are correct that number will double to 14 million by the middle of the next century. One in 10 individuals over 

65 is afflicted with Alzheimer’s, and half of those over 85 have Alzheimer’s. 

If we are able to delay the incidence of Alzheimer’s, we will be 

able to save a tremendous amount of money. The statistics show 

that delaying the onset of Alzheimer’s for 5 years would save some 

$50 million in annual health care costs. 
2

Of course, we all know that President Reagan suffers from Alzheimer’s, and his condition has brought to the attention of the 

American people the very, very serious problem. President Reagan’s Alzheimer’s disease is something that everyone knows about. 

One additional note before turning to my distinguished colleague, 

and that is the issue on stem cell research. At the present time, 

through an opinion of counsel for the Department of Health and 

Human Services, Federal funds may be used on stem cell research 

after the stem cells have been extracted from the embryos, but it 

is not possible to use Federal funding to extract the stem cells from 

the embryos. 

Stem cells hold enormous promise in virtually every line of disease. On Saturday the New York Times carried an extensive story 

about how stem cells may be inserted into diseased heart tissue to 

deal with the problems of heart attacks, heart disease, and hardening of the arteries. 

The efforts to cure Parkinson’s disease has benefitted enormously 

from stem cells with estimates that Parkinson’s may be curable 

within 5 years. 

Spinal cord injury is another ailment where stem cell research 

can be very, very helpful. And it may be that Alzheimer’s, too, 

could benefit from stem cells. 

During the course of today’s hearing, we will hear testimony 

about advances which have been made to combat the onset of Alzheimer’s. 

Senator Harkin and I have taken the lead in sponsoring legislation which would remove the prohibition now preventing funds 

being used for research to extract stem cells from embryos. We realize that this is a controversial issue and that there are some who 

contend that the embryos constitute human life. 

The fact is that the embryos were created for in-vitro fertilization 

and there are many excessive embryos which will be destroyed, if 

not put to the use of saving lives. These stem cells are a veritable 

fountain of youth. I mention that because I think it is important 

to have as much public awareness on this issue as possible, so that 

the people of America may be informed, may express themselves, 

and have an impact on Congressional action. 

Now, I am pleased to turn to my distinguished colleague, Senator 

Tom Harkin. 

OPENING STATEMENT OF SENATOR TOM HARKIN

Senator HARKIN. Well, Mr. Chairman, thank you very much. You 

have been a great champion for research on Alzheimer’s disease 

over the years. We have worked very closely together. I commend 

you for calling this hearing. And obviously, there is more than just 

a little bit of interest in this hearing, as I can see by the audience 

here today. 

I want to thank you, Mr. Chairman, for giving my remarks for 

me. I think you have said just about everything I wanted to say. 

Senator SPECTER. So, that is what happens when you work together with someone for more——

Senator HARKIN. That is right. 

Senator SPECTER [continuing]. Than a decade and have similar 

aptitudes. 
3

Senator HARKIN. We have been working together, now, for 11 almost 12 years now. That is right. And it has been a great partnership. And I appreciate it, Mr. Chairman. 

We are fortunate to have a distinguished panel of guests with us 

this morning. I especially wanted to extend a welcome to John 

Wagenaar, who is visiting us from George, Iowa. 

Mr. Wagenaar, we have heard great things about the work you 

and your wife, Darlene, have done to raise awareness about Alzheimer’s. And we thank you for making the trip to Washington to 

tell us about your experiences. 

I am told that there are many who are here today who will be 

on the Hill today and tomorrow who have Alzheimer’s. I commend 

you for your courage in being here. Do not fade into the shadows. 

Get out in front and make sure people are aware of what is going 

on in your families and in your lives. 

The most poignant and most telling stories to have the impact, 

I think, on Senators and Congressmen, are your own personal stories. And so, I commend each of you who is here in Washington, 

who is battling this disease, this illness. And I commend you for 

being here and being out in front. 

Like everyone here, I am deeply concerned about Alzheimer’s. 

Four million Americans currently suffer. Unless we take immediate 

and dramatic action, that number could rise to about 14 million in 

the next 40 years. 

Fortunately, researchers have made some extraordinary advances in recent years. A decade ago there were no Alzheimer’s 

drugs on the market. Today there are four. More are on the way. 

One of the areas I am interested in, and Dr. Hodes, I know, will 

be talking about it after a bit, is that scientists have developed a 

vaccine, that when tested on animals, appeared to ward off the 

brain-clogging deposits that are associated with Alzheimer’s. Now, 

plans are underway to test this in humans. That is why we need 

more money for research. 

Researchers have also come a long way in learning how to diagnose Alzheimer’s. And they are doing some promising studies on 

the links between this disease and vascular disorders, like strokes 

and high blood pressure. 

I also want to commend the chairman for his statements this 

morning and the position he has taken on stem cells. We are in 

lockstep on this issue, I can tell you. This is not a partisan issue, 

but we are in lockstep on this issue. 

There are hundreds of thousands of embryos that are now frozen 

in nitrogen. Quite frankly, they are going to be discarded. And to 

think of the potential that these might have for saving human 

lives, because of the research that can be done, is something that 

we just cannot back away from. 

So, I commend you for that. And we have just got to move ahead 

in letting our researchers do the research that is necessary. 

So, again, we hope that we can raise the NIH budget this year 

and reach our goal, but there is one other thing I want to mention. 

I mentioned it to some of my friends who are here from Iowa, just 

before we came up here. Senator Specter and I worked together to 

fully fund the Family Caregivers Support Program. Seven in ten 
4

people with Alzheimer’s live at home where family members provide over three-fourths, 75 percent, of their care. 

Those of us who have been touched by Alzheimer’s in our families and our relatives know what kind of a toll that takes on families; the financial toll, the psychological toll. And so, hopefully, we 

can do something with the Family Caregivers Support Program to 

help provide some support for the families, for respite, the kind of 

support they need in their own homes to take care of their loved 

ones. 

This year the Federal Government will spend more than a half 

of a billion dollars on preventing and finding a cure for Alzheimer’s. Now, a lot of people say that is a lot of money, but it is 

pocket change compared to the $100 billion that Alzheimer’s costs 

us every year in this country. 

By 2010 the annual Medicare and Medicaid costs, alone, will rise 

from $50 billion to $82 billion. In Iowa, where we have a high 

share of elderly in our society, those costs will increase by 63 percent. 

So, as the chairman said, if we can just forestall the onset by 5 

years, we really save a lot of money in Medicare. That is really the 

answer to the problems that plague us in Medicare. 

So, again, we cannot stop now. We have come too far. I thank 

all of you for being here. We need your help, both in the overall 

funding for NIH, but also in ensuring that we get the adequate 

monies that we need to really zero-in on Alzheimer’s. We are close. 

We cannot give up. We cannot step back. We have got to take a 

big step forward. 

And I thank you all for being here today and, well, they say 

sometimes that leadership requires a big foot in the middle of the 

back or maybe lower down. 

So, I thank you. I am not saying you all have big feet. 

But I thank you for being here and putting the foot in the back 

of Senators and Congressmen. 

Thank you. 

[The statement follows:] 

PREPARED STATEMENT OF SENATOR TOM HARKIN

According to the Alzheimer’s Association the costs of treating the disease in Iowa 

will increase more than $300 million this year, going from $480 million to $784 million. 

Thank you, Mr. Chairman. You’ve been a great champion for research on Alzheimer’s Disease over the years, and I commend you for calling this hearing. 

We’re fortunate to have such a distinguished panel of guests with us this morning. I’d like to extend a special welcome to John Wagenaar, who’s visiting us from 

George, Iowa. Mr. Wagenaar, I’ve heard great things about the work that you and 

your wife, Darlene, have done to raise awareness about Alzheimer’s. Thank you for 

making the trip to Washington to tell us about your experiences. 

Like everyone here, I am deeply concerned about Alzheimer’s Disease. It’s a serious health problem now, but it could reach epidemic proportions in the near future. 

Four million Americans currently suffer from Alzheimer’s. Unless we take immediate and dramatic action, that number could rise to 14 million by the year 2050. 

Fortunately, researchers have made some extraordinary advances in recent years. 

A decade ago, there were no Alzheimer’s drugs on the market—today there are four, 

and more are on the way. Scientists have developed a vaccine that, when tested on 

mice, appears to ward off the brain-clogging deposits that are associated with Alzheimer’s. Plans are now under way to test this vaccine in humans. 
5

Researchers have also come a long way in learning how to diagnose Alzheimer’s. 

And they’re doing some promising studies on the links between this disease and vascular disorders like strokes and high blood pressure. 

Those advances are a direct result of this nation’s growing investment in medical 

research. Chairman Specter and I have worked hand-in-hand for many years to provide more resources for NIH. This year, we hope to raise the agency’s budget by 

$3.4 billion. And next year, we hope to reach our five-year goal of doubling federal 

spending on medical research. 

The chairman and I have also worked together to fully fund the Family Caregiver 

Support Program. Seven in 10 people with Alzheimer’s live at home, where family 

members provide 75 percent of their care. We all know the financial and psychological toll that Alzheimer’s takes on these caregivers. They need help, too, and the 

Family Caregiver Support Program is a good start. 

This year, the Federal Government will spend more than half a billion dollars on 

preventing and finding a cure for Alzheimer’s. That might seem like a lot of money, 

but it’s pocket change compared to the $100 billion that Alzheimer’s Disease costs 

this nation every year. 

By 2010, the annual Medicare and Medicaid costs alone will rise from $50 billion 

to $82 billion. In Iowa, the costs will increase by 63 percent, from $480 million to 

$784 million. But if we can find a way to delay the onset of Alzheimer’s by just five 

years, we’ll cut the cost of this disease by $50 billion a year. 

So we can’t stop now. We’re making great progress—but we don’t have much time. 

We need to invest more money in Alzheimer’s research today, before it’s too late for 

millions of Americans who could be stricken with this disease in the years ahead. 

Again, I thank Chairman Specter for calling this hearing, and I look forward to 

the testimony.

Senator SPECTER. Thank you, Senator Harkin. 

Senator Craig, an opening statement? 

Senator CRAIG. Mr. Chairman, I do not have. I want to thank 

you for holding this hearing and drawing our attention to this horrible disease. 

I now Chair the Aging Committee. And we are going to spend a 

good deal of time on this and other issues, as we examine the difficulties and the problems that an aging American population has. 

What you offer us with your leadership in the necessary monies 

to do the kind of healthcare research that we are doing and doing 

very effectively now, is extremely important. We bring those forces 

together. And we now know that with our technology and our ability we can lick a lot of problems or diseases. This is one of them. 

And I think Senator Harkin has put it well; you all are here today 

with a very loud voice. We hear you. And we will respond. 

Thank you. 

Senator SPECTER. Thank you very much Senator Craig. 

We have invited the co-chairman of the House Alzheimer’s Task 

Force, Congressman Markey and Congressman Smith. It is always 

a question as to who goes first. And I note that we have two very, 

very senior Members of the House here today; Congressman Smith 

being elected in 1980, and Congressman Markey being elected in 

1976. 

STATEMENT OF HON. EDWARD J. MARKEY, U.S. REPRESENATIVE 

FROM MASSACHUSETTS 

Senator SPECTER. We will lead with Congressman Markey. I 

would read you Congressman Markey’s biographical resume, but it 

would take longer than the few minutes which are allotted to Congressman Markey. Suffice it to say that he is a leader in many 

fields in the House, including telecommunications issues, and just 

yesterday received the Alzheimer’s Association Humanitarian 

Award for 2001. 
6

Thank you for joining us Congressman Markey, and we look forward to your testimony. 

Mr. MARKEY. Thank you, Mr. Chairman, very much. 

And as amazed as I am that I have been a Congressman for 25 

years, it is even more amazing to everyone I went to high school 

with. 

So, I agree with you. Each of us, I think, kind of still wonders 

how we got here and got to serve in this amazing institution that 

allows us to help so many people. 

Senator SPECTER. Senator Bumpers said to me shortly after I arrived: ‘‘Arlen, you are going to spend the first 6 months wondering 

how you got here, and the next 51⁄2 years wondering how everybody 

else got here.’’ 

Mr. MARKEY. Well, I actually still have the opposite. I wonder 

how I got here. I have great respect for, obviously, this committee 

and honestly, the wonderful work that it has done over the years, 

not only for Alzheimer’s, but for every other disease. 

Chris Smith and I founded the Alzheimer’s caucus 2 years ago. 

We now have 131 Members of the House who are members of the 

Alzheimer’s caucus. 

To be honest with you, my mother contracted Alzheimer’s back 

in the mid-eighties. Up until the eighties, I had been focusing upon 

Alzheimer’s as the disease which I’ve worked on in the House of 

Representatives, little knowing that my wife—that my mother had 

it. And once she had it, and I am sure that many people behind 

me know what I am talking about, it became impossible for me, 

really, to even talk about it. 

My mother was valedictorian of her high school class. She was 

able just—without going to college, of course, because in that era 

women did not go to college. She graduated in 1926 from high 

school. Her mother had died the year before. The Social Insurance 

Program for the United States, in 1926, was that if the mother 

died, one of the daughters would have to stay home and raise the 

rest of the family. And that is the way it was. 

So, that as we grew older, my brothers and I, we realized that 

the fun that she used to have in solving calculus problems, trigonometry problems for us in college was strictly a reflection of the 

strength of this brain that God had given to her. 

Now, by the time she was able to get married, because she had 

to raise that other family, she was in her late thirties. She married 

my father, who was a milkman for the Hood Milk Company. My 

father always said to us that he was going to do the best he could 

to make sure that my mother never stepped foot in a nursing 

home, because it was an honor that she had married him; that the 

valedictorian had married a milkman. 

And so, at 81, 82, 83, 84, 85, 88, he stayed—he kept her in the 

home. He got up five, eight times a night, lifted her up, put her 

on the toilet, wiped her off, put her back in the bed again; fed her 

all day long, because it was an honor. 

Now, the interesting thing about this disease is that unlike just 

about any other disease, the people who are afflicted by it cannot 

be their own advocates, with the exception of those who are in the 

early stages. Moreover, those who are their principal caregivers at 

home cannot be their advocates. 
7

So, unlike just about every other disease, those who are afflicted 

by it and their primary caregiver in the home cannot go out and 

lobby. They cannot go out and march. They are trapped. They are 

trapped by this disease. 

Now, there are 4 million people who have it today. And 14 million by the time all of the baby boomers retire. Fourteen million 

people, plus a principal caregiver at home. That is 28 million people, at a minimum, whose entire lives will be Alzheimer’s. That is 

all they will have in their life, because once it hits, it becomes all 

encompassing, as the people over my shoulder know. 

So, what we advocated last year and you were good enough to help us to make that come true, was for an $85 million increase 

in Alzheimer’s research funding, which brought the number up to 

$525 million. A $2.25 million program for clinical research awards, 

so that we could focus upon the clinical aspects of this disease. We 

hope that it is cured, but we are not confident it will occur in the 

next few years. We just pray that it will. 

And we also were able, with your help, to clarify the homebound 

definition, because up until the end of last year, if anyone wanted 

to take this other person in their home to church, to mass, to synagogue, to a mosque, or to an adult day care center, they would lose 

the benefits in the home; someone coming in for an hour or two a 

day to help out. 

That was a huge restriction on these people. They almost had to 

be prisoners in their home with this person who they might be able 

to take out for an hour, especially to go to church. So, that was a 

great boon to these families to repeal that. And I understand that 

it was $1.2 billion over the next 10 years, but, still, I think it is 

critical, because so much of this ultimately is affecting the caregivers, as well. And so, not only is it good for the person victimized 

by it, but also by the family caregiver. So, this year, what we are asking for is a $200 million increase 

in the research budget. And in addition, that we fully fund——

Senator SPECTER. Congressman Markey, I am sorry to interrupt 

you, but the time is—you are a bit over, and we have a large number of witnesses, and the budget is on the floor. Senator Harkin 

and I are going to have an amendment pending to try to raise NIH 

funding. So, we are going to have to stick very close to time. 

Mr. MARKEY. Could I have 1 minute, then, to complete, Senator? 

Senator SPECTER. Sure. 

Mr. MARKEY. I thank you. On the Apollo 13 mission, the chamber 

had lost its oxygen. It was about to head for a crash. They called 

back to Control Center in Houston. And Jim Lovell was there. And 

he said, ‘‘We are going to have to find a way to adapt; to find a 

way in which we are going to solve this problem,’’ because the 

wires were on fire; the oxygen had been lost. 

And those astronauts did not know if they could do it. And Jim 

Lovell sent back the message that they were going to use any device they could, find any means they could, to solve this problem. 

And when they questioned it again, Jim Lovell said, ‘‘Failure is not 

an option.’’

The same kind of oxygen is being lost. The same kind of wires 

are on fire in the brains of these Alzheimer’s victims. And for these 

families and for our country, failure is not an option. We must find 
8

the cure for this before 14 million victims and their spouses or 

their loved ones are trapped forever. And so, you have the power to increase this budget by $100—by $200 million this year; $2.25 million for the clinical program and 

$25 million to expand the Alzheimer’s matching grant program by 

$6 million. And I hope that you can make that possible. 

Thank you. 

[The statement follows:] 

PREPARED STATEMENT OF REP. EDWARD J. MARKEY

Good morning. I would like to thank Chairman Specter, Ranking Member Harkin 

and the entire Subcommittee for holding this important hearing and for your ongoing support for research funding for Alzheimer’s Disease. 

In addition, I thank you for this opportunity to testify on behalf of the 4 million 

Americans afflicted and the countless others affected by this devastating illness. 

In 1999, I approached my good friend Chris Smith with one thing in mind . . . 

to make Alzheimer’s a top priority issue for Congress. That June, we started the 

Bipartisan Congressional Task Force on Alzheimer’s Disease. Our objectives included increasing federal research dollars to aid in the discovery of treatments, preventative measures and a cure; and addressing the needs of patients and their caregivers burdened with the daily duty of dealing with an afflicted loved one. 

Today the Task Force is at a membership of 131 and growing. And thanks to the 

efforts of many, the 106th Congress took three significant steps toward meeting the 

goals of the Task Force. These steps included: (1) increasing research funding for 

Alzheimer’s by $85 million (2) creating a new clinical research and training awards 

program to fund physician-scientists in clinical research and (3) clarifying the 

‘‘homebound’’ definition in the Medicare law so that all beneficiaries could attend 

religious services as well as adult day care. For Alzheimer’s beneficiaries this was 

a crucial clarification in the law as adult day care is not only a proven therapeutic 

treatment for patients but it provides a much needed break in the day to family 

caregivers. 

This Congress we want to build on our past successes by encouraging scientists 

to build on the progress that we’ve made in Alzheimer’s research. 

Research is medicine’s field of dreams from which we harvest new findings about 

the causes, treatment, and prevention of disease. Since 1950, we have learned more 

about health and disease than in the entire history of medicine. In fact, we’ve eliminated some of the major scourges that killed us at the turn of the century like 

smallpox and diptheria. 

That’s why we must make sure that research not only survives but thrives. We 

are asking for a $200 million increase in federal funding for the National Institutes 

of Health—with an ultimate goal of $1 billion by 2003. In addition, we ask that the 

program which the Task Force was instrumental in authorizing—The Alzheimer’s 

Clincal Research and Training Awards—be fully funded at $2.25 million. In addition 

to building on successful research, it’s also important to build on successful programs. Specifically, we are asking that funding for the Alzheimer’s Matching Grant 

Program currently available in only 16 states be increased by $6 million to $25 million. Expanding this program which encourages innovation in long-term care, will 

enable all 50 states to reach Alzheimer’s families in underserved areas, particularly 

minority and rural communities. 

As many of us here today know, Alzheimer’s Disease is cruel and indiscriminate—

it attacks the brain, captures the mind and erodes the mental and physical abilities 

of its victim before ultimately stealing his or her life. If you have one parent affected 

with Alzheimer’s you are three times more likely to develop the disease yourself and 

if both of your parents are affected, you are at a fivefold increase in risk. 

In fiscal year 2001, the Federal Government spent an estimated $520 million on 

Alzheimer’s research—this is a modest investment compared with the annual $100 

billion cost of the disease. We know that the disease process begins 10–20 years before symptoms begin. If science can find a way to delay the onset of Alzheimer’s for 

even five years, our nation will save an estimated $50 billion in annual health and 

long term care costs. 

In 1900, the average life expectancy was 48. In 1999, life expectancy at birth 

reached an all-time high of 77 years. In 1900 about 1 in 25 Americans were over 

the age of 65. In 1990, the proportion rose to 1 in 8—a 10-fold increase. It is estimated that by the year 2040, 1 in 5 Americans will be over the age of 65 and there 

will be almost four times as many very old people over the age of 85 as there are 
9

today. Right now we know that one in ten Americans over age 65 and half of all 

persons over the age of 85 have Alzheimer’s. This means that by 2050—if we fail 

to find a way to prevent or cure Alzheimer’s 14 million Americans we fall victim. 

Pasteur once observed that ‘‘Chance favors the prepared mind.’’ We can choose to 

prepare, or we can turn a blind eye and leave the fate of our future aging population 

to chance. 

So, as we leave here this morning, let us all continue to work together to soon 

reach that day when children will have to turn to their history books to find out 

what Alzheimer’s Disease was. 

I thank you.

Senator SPECTER. Thank you very much, Congressman Markey. 

Every witness is going to be allowed 5 minutes. And I regret to 

say that we are going to have to stick very close to time. The budget is on the floor. And let us repeat, Senator Harkin and I will offer 

an amendment to the Budget Resolution that will raise the figure 

for NIH, and we may be called upon to offer that amendment 

today. So, we are going to be under very considerable time constraints. 

STATEMENT OF HON. CHRISTOPHER H. SMITH, U.S. REPRESENTATIVE 

FROM NEW JERSEY 

Senator SPECTER. We turn, now, to our Congressman Christopher H. Smith, who is the co-chair of the House caucus on Alzheimer’s. Congressman Smith is in his 11th term, having been 

elected in 1980. He chairs the House Veterans Committee. And in 

that capacity, he and I have worked very closely together, since I 

chair the Senate Veterans Committee. 

Thank you for joining us, Congressman Smith, and we look forward to your testimony. 

Mr. SMITH. Thank you very much, Mr. Chairman and members 

of this committee. Thank you for this opportunity. And let me just 

say that when Ed Markey was talking about his mother doing his 

homework, it is good to know that somebody else’s mother did his 

homework in high school, as well. 

I have just a couple of points, and Ed has asked—and the bottom 

line is we are requesting $200 million in NIH increases for Alzheimer’s—on the issue of basic research; the $2.25 million for the 

Alzheimer’s clinical research and training program; and the $6 million increase for the matching grant program, so that all the States 

that would like to participate, can. 

We have a very short window of opportunity here. We know that 

the onset of this can take between 10 and 20 years. We need to get 

to the bottom of it. And hopefully, more money will make a difference. 

And bottom line, 25 percent of all the promising and meritorious 

Alzheimer’s applications receive funding; meaning, many others 

that are very, very good and—and viable—never get funding. So, 

the money, I think—we think, would be very well utilized. 

Since, Senator, you did raise the issue—a controversial issue of—

of embryo stem cells, let me just address some of my comments to 

that, because many of us do believe, quite passionately, that destroying human embryos for so-called medical research purposes is 

unethical. 

We believe that human life cannot be reduced to the level of a 

guinea pig; that there is no such thing as a ‘‘spare embryo.’’ There 

may be those that are in cryogenic tanks, but there is no such 
10

thing as a spare human being. And thankfully, there are alternatives. And I hope that this hearing today begins to refocus on the 

other stem cells, and that is adult stem cells. 

You mentioned, over the weekend, the remarkable breakthrough 

reported in The New York Times, and elsewhere, on the use of 

stem cells to treat cardiac patients. The study you mentioned was 

not an embryonic stem cell study, but adult stem cells. Robert 

Bazell made a comment on MSNBC about this study. And in his 

report, he has a Dr. Orlic from the National Human Genome Research Institute in Bethesda, making some very profound comments that can hopefully keep us in consensus, rather than shattering that consensus. 

And this is Dr. Orlic’s statement, ‘‘Until now, researchers 

thought that stem cells from embryos offered the best hope for rebuilding damaged organs, but this latest research shows that embryos, which are politically controversial, may not be necessary. We 

are currently finding,’’ he goes on to say, ‘‘that adult stem cells can 

function as well, perhaps even better than embryonic stem cells.’’

Dr. Douglas Melton of Harvard University recently wrote, 

‘‘Human embryonic stem cells are trickier than even mouse; they 

are more tedious to grow.’’

Molecular biologist Michael Shamblock, a Ph.D., sums up the 

concerns with embryonic stem cell research when he said, and I 

quote, ‘‘We thought, from the first, that problems would arise from 

using HPSCs [human pluripotent stem cells, or embryonic stem 

cells] to make replacement tissues. The early stage stem cells are 

both difficult and slow to grow. More important, there are risks of 

tumors. If you are not very careful when coaxing these early cells 

to differentiate to form nerve cells and the like, you risk contaminating the newly differentiated cells with stem cells. Injected into 

the body, stem cells can produce tumors.’’

There are a number of other similar suggestions that there is another way, there is another path—that I would respectfully submit 

needs to be followed—which does not take human life and turn 

human life into the status of a guinea pig. 

So, having said that, we can have a consensus; we can work in 

a way that everyone can feel good, and we can have very, very fine 

research using adult stem cells, because they offer great promise. 

And the breakthrough over the weekend, which is one item in an 

ongoing series of breakthroughs, suggests that there is a path 

around which we can all rally. Use the money and use it for many 

kinds of research, including adult stem cell. 

I thank you for this opportunity and look forward to any questions you may have. 

[The statement follows:] 

PREPARED STATEMENT OF REP. CHRISTOPHER H. SMITH

THE RACE FOR ANSWERS TO ALZHEIMER’S DISEASE

Mr. Chairman, thank you for providing me with an opportunity to urge the committee to set aside sufficient funding for critical lifesaving and life affirming medical 

research. 

Congressman Markey and myself are here to represent the interests of the four 

million Americans afflicted with Alzheimer’s Disease and the 19 million caregivers 

who look after loved ones suffering from the disease. 
11

As co-founder of the Bipartisan Congressional Task Force on Alzheimer’s Disease—which is currently comprised of 133 members—we are seeking Committee 

support in three areas: (1) adequate support for Alzheimer’s research at the National Institute of Health so as to accommodate a $200 million increase in research 

funding (2) an increase of $2.25 million to fully fund the Alzheimer’s Clinical Research and Training Program—a worthwhile program authorized last year to improve diagnosis, treatment and prevention, and (3) a $6 million increase in the Alzheimer’s Matching Grant Program so we can bring funding to $25 million and allow 

all eligible states to participate in the program. 

Mr. Chairman, your committee gets many requests for increased funding. So you 

would be justified in asking why these three requests are worthy of your support. 

The bottom line is that we have a very narrow window of opportunity to save millions of Americans from developing this disease. The disease process begins 10 to 

20 years before symptoms appear. This means we must find a way to stop or slow 

the disease process within the next five or ten years. Right now, 50 percent of every 

American aged 85 and above suffer from some kind of dementia. As life spans increase, the number of Alzheimer’s patients will rise from 4 million to 14 million over 

the next 50 years. Thus, if we fail to seize this unique moment in history, the implications for our society and our economy will be staggering. 

Unlike many diseases, Alzheimer’s affects the entire family, as caregivers make 

enormous sacrifices of time, money, and even then own health status. There is simply no way we can save Medicare if we let 14 million baby boomers develop Alzheimer’s disease. Medicare patients with Alzheimer’s cost 70 percent more to treat 

than those who do not. And a lifetime cost of just one case can run between 

$174,000 and $200,000. If every Alzheimer’s patient needed a long-term stay in the 

nursing home, state and federal Medicaid budgets would burst at the seams, threatening the nation’s safety net for all indigent persons. 

So what needs to be done? First, we need to boost NIH funding so that it can accommodate a $200 million increase in total Alzheimer’s research across all agencies. An increased investment will allow for researchers to search for simple, practical, widely available, and affordable ways to detect the earliest changes in the 

brain. This is the only way physicians will be able to identify who needs the treatment that will help alter the course of the disease while there is still enough time 

to make a difference. It will also allow for additional large-scale trials aimed at prevention of Alzheimer’s disease, including studies of persons with mild cognitive impairment and new longitudinal studies of persons who are aging successfully. Part 

of the answer to Alzheimer’s may lie in discovering why many live well into their 

90s with their cognitive abilities intact. Furthermore, appropriate funding will permit us to establish additional large-scale clinical trials of early intervention to slow 

or prevent decline. Scientists have many more sound ideas for effective treatments 

that they can test with increased funding. 

Sadly, only 25 percent of all promising and meritorious Alzheimer’s disease applications receive funding from the NIH. Thus, it is evident that the overwhelming 

percentage of well-scoring Alzheimer’s applications do not receive support from the 

NIH. Many valid scientific opportunities that could enhance our knowledge of Alzheimer’s have been lost. Mr. Chairman, we are headed in the wrong direction—we 

need to be funding most, if not all, promising and viable Alzheimer’s studies. We 

certainly should not be rejecting nearly 75 percent of every promising new research 

project presented to the NIH. 

Secondly, and building upon the first request, is $2.25 million for the Alzheimer’s 

Clinical Research and Training Program This program was authorized last year to 

improve diagnosis, treatment and prevention of Alzheimer’s disease. Better training 

and education will allow professionals to improve their diagnosis, management, and 

prevention of Alzheimer’s disease. The program is designed to help promising young 

researchers who wish to make Alzheimer’s research, their life’s work. The $2.25 million asked for in this program is a modest amount to train a core group of bright 

and upcoming professionals in managing Alzheimer’s disease. 

Finally, we believe that states who wish to participate in the Alzheimer’s Matching Grant Program ought to be allowed to do so and receive some level of federal 

support. This is a focused program to promote innovation and experimentation in 

state long-term care programs treating Alzheimer’s patients. This 15-state demonstration has operated for 8 years with enormous success. A $6 million increase, 

bringing total funding to $25 million, would allow all states who are expected to 

apply for funding the ability to receive support. I believe the states have often led 

the way for new ideas. If we are serious about letting states continue to innovate, 

we need to get behind this program. 

Mr. Chairman, we have seen that the Alzheimer’s investments Congress has 

made in the past decade are now paying off in rapid discoveries regarding the basic 
12

mechanisms of the disease, the complex interplay of genetic and environmental risk 

factors, and the treatment and interventions that can slow decline. Discoveries in 

the past year alone have generated great excitement in the field of Alzheimer’s. For 

instance, scientists have developed a third FDA-approved drug designed for the 

treatment of the disease’s cognitive symptoms. In addition, scientists have completed Phase 1 of a clinical trial involving humans in which they used a vaccine that 

appears to prevent in the brains of mice the amyloid deposition that forms plaques 

which characterizes Alzheimer’s disease. 

The United States enters the 21st Century facing an imminent epidemic. By 2050, 

14 million of today’s baby boomers will have Alzheimer’s disease. For most of them, 

the process that will destroy their memories, their lives, and their savings has already begun, The annual cost of Alzheimer’s disease will soar to at least $375 billion, overwhelming our health care system and bankrupting Medicare and Medicaid. 

The only way to avoid this crisis is to act now.

Senator SPECTER. Thank you very much, Congressman Smith. 

You and I have a somewhat different view on the subject. And we 

had a chance to discuss it at some length on a train ride to Philadelphia when we visited the Veterans’ Hospital there. When the 

Secretary was en route to go to New Jersey with you. 

And there will be an opportunity to go into some detail as to the 

issue of whether adult stem cells are adequate. I have seen the 

body of the literature on it. And I have a different conclusion. But 

I very much respect what you have said. 

When you talk about human life, I quite agree with you; that I 

would not do anything to invade human life and would not want 

to make any form of life or any human life a guinea pig. The difficulty that I have is that these embryos are going to be destroyed. 

And I know your view is that action ought to be taken to avoid the 

destruction. And this is a very, very sensitive matter and a very 

important matter. 

I know that there will be time for extended debate, both in the 

House and in the Senate. And I appreciate your point of view. We 

will give you the last word, if you want to make an additional comment. 

Mr. SMITH. I appreciate that, Senator and Mr. Chairman. You 

know, when you say they are going to be destroyed, that is a possibility. It is not an absolute certainty. And with—if the concept and 

if the proverbial Rubicon is crossed, that there are certain human 

beings that could be destroyed, in the process of having their stem 

cells taken away, it does indeed turn them into the status of a 

guinea pig. 

And there will be, after that, once that bridge is crossed, other 

efforts will be made—I mean, if we can take those human embryos 

and use them, it undermines the sanctity of human life and puts 

us on a slippery slope where all of our lives are put at risk and 

devalued. 

You know, there is no such thing as a spare embryo. There is no 

such thing as a spare human being. I would argue, passionately 

and hopefully persuasively, that from the moment of fertilization 

until natural death, we need to have protection for innocent human 

life to the greatest extent possible. 

And thankfully—and I cannot stress this enough—there is an alternative that offers greater promise and does not have the ethical 

baggage that embryonic stem cells have. It is the adult stem cell 

approach. 
13

Senator SPECTER. Thank you very much. Unless there is some 

question, we will move to panel two. Thank you very much. 

Senator HARKIN. I must say, Mr. Chairman, you and I have both 

put too much into this whole effort. Listen, Chris knows I respect 

him highly. And he is a very principled person. I hope you give us 

the same benefit; that we are principled, also. 

Both Senator Specter and I have been involved in the stem cell 

thing from the beginning. I believe that we have crossed all of the 

t’s and dotted all of the i’s, in terms of the ethical underpinnings 

of this. I just say two things; that I think there is a lot of misconception about stem cells. I have talked to many people who 

think that you are talking about embryos and that equals the 

fetus. 

I always do this: I hold up a piece of paper. What is on that piece 

of paper? I defy anyone there to see it. You cannot see it. I put a 

little dot. I took my pencil and put a little dot on it. That is how 

big those embryos are. It is not a fetus. It is an embryo. 

These are the leftovers from women who, for one reason or another, could not have a child. And so, they went through embryo 

placements. They now are happy parents. They have a child. But 

obviously, you know, a lot of embryos are left over and they are 

now in cryogenic tanks. To think that we are going to keep those 

for the next 10,000, 1 million, 2 million years—no. Yet they hold 

a lot of promise. 

Now, I do disagree with you, Congressman Smith, about the 

pathways. Yes, there are other paths. This premise is where we differ. I think we ought to go down that path of adult stem cells. I 

think it may hold a lot of promise, but basic research, I have always said, is like you have 10 doors that are closed. 

If you open one door, the odds are 10 to 1 that you are going to 

find a cure. If you open five doors, it is 2 to 1. We are trying to 

open doors. And to shut off one pathway that may lead to a cure 

and which scientists believe that can be done ethically, under 

sound ethical guidelines that have been set up, to me, is to cut off 

the possibility that they may lead to the kind of interventions and 

cures that we need for a host of different illnesses, not just Alzheimer’s. 

And so, yes, I think we do have a disagreement there, but I believe it can be done very ethically. And I believe it can be done in 

a manner that takes these little embryos the size of a dot, size of 

a pinhead, and further enhance human life. And it seems to me 

that is what we all ought to be about. 

Thank you, Mr. Chairman. 

Mr. MARKEY. Tom. I’m sorry. Tom. Can I say that I agree with 

you and agree with Senator Specter on stem cell research? So, I 

think——

Senator SPECTER. Thank you, Congressman. I think we better——

Mr. MARKEY. I take the position we choose—just so you will 

know that the Congressional Task Force on Alzheimer’s does not 

take a position on the subject. Chris and I have different points of 

view. 

Senator SPECTER. Sure. 
14

Mr. MARKEY. I share your view on the subject. We try to find 

agreement on all the issues upon which we do agree. 

Senator SPECTER. We will have an opportunity at a later time to 

explore it in some detail. 

I spoke, perhaps, too soon, Congressman Smith, in promising you 

the last word. I should have known better, with Senator Harkin at 

my side. 

But I respect——

Mr. SMITH. But do I get another last word? 

Senator SPECTER. I respect your views, Congressman. 

Senator CRAIG. Mr. Chairman, I will remain silent. 

Senator SPECTER. It is too late, now, Senator Craig. 

But I respect your views. And I think you are passionate beyond 

any question. And I think you are persuasive, as well. Thank you 

very much, Congressman Markey and Congressman Smith. 

STATEMENT OF DR. RICHARD J. HODES, DIRECTOR, NATIONAL INSTITUTE ON AGING, NATIONAL INSTITUTES OF HEALTH, DEPARTMENT OF HEALTH AND HUMAN SERVICES 

Senator SPECTER. We will now turn to Dr. Richard Hodes, who, 

since 1993, has been the Director for the National Institute on 

Aging. He has had several other posts at NIH, including Clinical 

Investigator at the National Cancer Institute, Program Coordinator 

for the U.S.-Japan Cooperative Cancer Research Program. He is a 

graduate of Yale University and an M.D. from Harvard Medical 

School. 

President Kennedy would say, Dr. Hodes, you have the best of 

both worlds. Thank you for joining us and we look forward to your 

testimony. 

Dr. HODES. Thank you, Mr. Chairman and members of the committee, for this opportunity to appear before you, again, to describe 

some of the progress over the past year in the research to understand and ultimately to treat and prevent Alzheimer’s disease. 

Alzheimer’s disease is a progressive and devastating disorder of 

the brain, which is a result of a long cascade of events. It results 

in the deterioration of intellectual functioning and ultimately a loss 

of independence. 

As noted, some 4 million Americans currently suffer from the disease. And due to the unprecedented increase in the number of aged 

among the American population in years to come, this number 

threatens to increase and create a true crisis of both personal and 

public health. 

With this understanding of urgency, the National Institutes of 

Health have been acting, through the Congressionally supported 

Alzheimer’s Disease Prevention Initiative, to understand the processes which underlie the disease and to translate this understanding into means of intervening. 

I would like, briefly, to review for you some of the clinical activities that exist today, built upon prior years of basic research, and 

then also to share with you the excitement of some of the current 

research that offers hope for next generation of interventions. 

The National Institutes of Health now support a number of clinical trials. Among these, some of the most challenging, most expensive, but most important, are those which attempt to intervene and 

prevent Alzheimer’s disease before its symptoms occur. 
15

Some of the active studies that are ongoing now are listed in the 

first transparency and visual. They represent trials of a number of 

agents, the promise of which was provided by prior studies of epidemiology and basic biology. 

They include studies of classes of agents, such as antioxidants, 

anti-inflammatories, estrogen, ginkgo biloba. As you note, from the 

timeline, these studies, because they are aimed at preventing the 

appearance of disease, require many years to completion. They are, 

therefore, a type of study that needs to be carried out in parallel, 

as we explore multiple avenues to opportunity, not knowing which 

is going to be the one that offers the greatest promise. 

In addition to these studies of clinical trial, we focus, as well, 

upon the needs of caregivers; those persons, loved ones, family 

members, taking care of individuals with Alzheimer’s disease. And 

there are, indeed, clinical trials that are underway in attempts to 

minimize this burden, as well. 

Some of them focus on patients with Alzheimer’s, reducing symptoms, such as agitation, improving sleep, to the benefit of both patients and their caregivers. Others have demonstrated the effects 

of interventions as diverse as exercise or the use of computer webbased resources to decrease stress among caregivers. 

And there is a large scale clinical trial now, nearing the stage of 

interpretation of reporting of data, the Resources for Enhancing 

Alzheimer’s Caregiver Health, or REACH initiative, which is attempting, in a large and diverse population of American caregivers, 

to look for techniques and methods to ease the burden on caregivers and to improve the quality of life for those for whom they 

provide this care. 

In addition to these ongoing studies, as we, as scientists, and as 

the public awaits their results, we turn to basic studies to try to 

improve our understanding at a molecular and genetic level of 

what is responsible for the devastation of Alzheimer’s disease, in 

an effort to then translate these findings into a new generation of 

promising interventions. 

Over the past years, excitement has occurred in a number of 

areas, tracing discoveries that included the identification of the 

chemicals involved in the lesions, plaques, and tangles in the 

brains of Alzheimer’s patients, then the genes which encode these 

products. And ultimately, it allowed us, for example, to transfer 

these genes by genetic engineering into mice, creating, for the first 

time, mouse models of Alzheimer’s disease. 

What you see in this schematic is the demonstration of the process by which a normal membrane protein in cells, the amyloid precursor protein, is cut by chemicals called secretases or enzymes, 

that, as indicated by the two scissors, can, to the misfortune of the 

individual involved, clip the protein into a peptide that can lead to 

amyloid plaques and on to Alzheimer’s disease and may thus be responsible for the disease. 

Now, armed with the information about what causes formation 

of these plaques, we can intervene to inhibit enzymes, and through 

that route, attempt to arrest or prevent disease. 

In the next transparency, you will see the example that Senator 

Harkin referred to. 
16

1 Evans, D.A., Estimated prevalence of Alzheimer’s disease in the U.S. Milbank, Q. 

1990;68:267–289. 

Now, with animal models available of Alzheimer’s disease, we 

can generate animals that are bearing human Alzheimer’s genes. 

As a result of this expression, they have, as shown in the upper 

left corner, the amyloid plaques stained in brown here, which are 

similar to the lesions seen in the brains of Alzheimer’s patients. 

And now, over the past year, we have seen interventions that 

have taken the approach of immunizing against this peptide, with 

the results seen in the bottom left, where, indeed, these plaques 

are prevented or in fact disappear. 

The figure to the right shows that it is not only the plaques that 

disappear. The high level of errors made in the abnormal mice, because they have poor memory can, in fact, be corrected or reversed 

by immunization with this peptide. These are studies now which 

move on to clinical trials. 

I thank you for the time to discuss with you the advances and 

the promise for future advances, as we translate our understanding 

of Alzheimer’s into clinical interventions. And I welcome an opportunity to answer any questions you may have. 

Thank you. 

[The statement follows:] 

PREPRED STATEMENT OF DR. RICHARD J. HODES

Mr. Chairman and Members of the Committee: Thank you for inviting me to appear before you today on an issue of interest and concern to us all, Alzheimer’s disease. I am Dr. Richard Hodes, Director of the National Institute on Aging (NIA), 

the lead federal agency for Alzheimer’s disease (AD) research. It is an honor to return to the Subcommittee with promising news about the progress that has been 

made in the past year to understand, treat and prevent AD. The fast pace of research is providing insight into AD as well as other neurodegenerative diseases and 

normal brain function. 

PREVENTING ALZHEIMER’S DISEASE: THE AD PREVENTION INITIATIVE

Alzheimer’s disease is the most common cause of dementia among older persons. 

It is a progressive, and at present irreversible, brain disorder that leads to a devastating decline in intellectual abilities and changes in behavior and personality. AD 

patients eventually become dependent on others for every aspect of their care. Scientists believe that AD develops as a result of a complex cascade of events, influenced by genetic and non-genetic factors, taking place over time inside the brain. 

These events cause the brain to develop lesions, including beta amyloid plaques and 

neurofibrillary tangles, and to lose nerve cells and the connections between them 

in a process that eventually interferes with normal brain function. 

As many as four million Americans now suffer from Alzheimer’s disease.1 The 

prevalence of AD doubles every five years beyond the age of 65, which will lead to 

dramatic increases in the number of new cases as the population ages. The last Census Bureau projections indicated there will be approximately 20 million people in 

the United States aged 85 or older by 2050, suggesting that there will be many 

more people at very high risk for AD. The National Institutes of Health (NIH) recognizes the urgency of this public health threat and is committed to supporting critical 

bench-to-bedside research to develop strategies for treating and, more importantly, 

preventing the onset of this devastating disease. 

The AD Prevention Initiative is a congressionally-supported intensive coordinated 

effort among several NIH Institutes, including the NIA, National Institute of Neurological Disorders and Stroke (NINDS), National Institute of Nursing Research 

(NINR), and National Institute of Mental Health (NIMH), to accelerate basic research and the movement of basic research findings into clinical practice. Improved 

understanding of the initial stages of AD has allowed researchers to focus on the 

development and testing of new treatments targeted at the earliest stages of the disease process. The core goals of the initiative are to invigorate discovery and testing 

of new treatments, identify risk and protective factors, enhance methods of early de-
17

tection and diagnosis, and advance basic science to understand AD. The initiative 

also endeavors to improve patient care strategies and to alleviate caregiver burden. 

(Chart #1) 

ONGOING CLINICAL TRIALS

The NIA is currently supporting 17 AD clinical trials, seven of which are largescale cognitive impairment and AD prevention trials. Prevention trials are among 

the most challenging and costly of research projects but, if successful, the payoff for 

people at risk, their relatives and society will be significant. Many of the agents 

being tested in these trials have been suggested as possible interventions based on 

long-term epidemiological and molecular studies. For example, epidemiology studies 

show that persons who have taken anti-inflammatory drugs have a lower risk of developing AD; and in basic research, inflammation around plaques is a hallmark of 

the disease. (Chart #2) There are similar rationales for estrogen and for anti-oxidant 

therapies. The first large-scale AD prevention clinical trial supported by the NIH, 

the Memory Impairment Study (MIS), is evaluating vitamin E and donepezil 

(Aricept) over a three-year period for their effectiveness in slowing or stopping the 

conversion from mild cognitive impairment (MCI) to AD. MCI is a condition characterized by a major memory deficit without dementia. The trial is being conducted 

by the NIA-funded Alzheimer’s Disease Cooperative Study (ADCS) group at medical 

research institutions in North America, including NIA-supported Alzheimer’s Disease Centers. The trial is scheduled to end in 2003. Other recently-started primary 

prevention trials will be completed in the years from 2003 through 2008. These 

trials are testing a variety of agents, such as aspirin, antioxidants such as vitamin 

E, combined folate/B6/B12 supplementation, estrogen, anti-inflammatory drugs, and 

ginkgo biloba, to determine if they will slow the rate of cognitive decline or prevent 

AD onset. (Chart #3) As scientists await the outcome of these ongoing studies, the 

next generation of drugs is being developed, targeting specific pathways in plaque 

and tangle formation and dysfunction and death of brain cells. 

Information about ongoing clinical trials and recruitment opportunities is available to the public through the NIA-supported Alzheimer’s Disease Education and 

Referral Center web site (http://www.alzheimers.org) and toll-free number (1–800–

438–4380), as well as on the NIH clinical trials web site (http://

www.clinicaltrials.gov). 

FROM BASIC SCIENCE TO TREATMENT

Developing effective treatments for AD based on advances in basic research is a 

major focus of NIA-supported studies. Important progress has been made in recent 

years by generating animal models of AD through genetic engineering of transgenic 

mice that express human AD genes and that express features of the human disease, 

such as the formation of amyloid plaques. In addition, the ability of researchers to 

develop drugs for effective treatment of AD was greatly enhanced last year by the 

discovery of enzymes called secretases. These enzymes are involved in the clipping 

of a normal cell surface protein to produce the amyloid peptide that forms the senile 

plaques found in the brains of AD patients. (Chart #4) The discovery of these enzymes, together with availability of animal models of AD, will be critical to the development and testing of effective and safe amyloid-preventing drugs. Major advances were also reported by researchers in the public and private sectors regarding 

the amyloid immunization approach to blocking the formation of amyloid plaques. 

In another major development, vaccine treatment prevented much of the cognitive 

decline usually seen with age in two AD transgenic mouse models. (Chart #5) To 

accelerate research into the vaccine approach to treating AD, NIA and NINDS have 

announced a Request for Applications (RFA) for research to understand and enhance vaccine-related therapies for AD prevention. 

Research on tau, the protein that forms the other major AD lesion, the 

neurofibrillary tangle, has also accelerated this year. Mutations in the tau gene 

have been shown to cause some forms of another late-onset dementia. A transgenic 

mouse strain was developed in the past year that expresses one of the human tau 

mutations and develops AD-like tangles. This animal model will help researchers 

understand why tangles form and what role they play in the pathology of AD and 

other dementias. 

Understanding the subtle physical changes that accompany aging and developing 

treatments to address these changes may also be useful in treating early stages of 

other neurodegenerative diseases such as Parkinson’s disease. For example, new results from a study on reversing the age-related shrinkage and dysfunction of certain 

brain cells that produce the memory-related chemical messenger acetylcholine show 

that nerve growth factor can reverse the age-related reduction in transport of 
18

acetylcholine from these cells to different parts of the brain important to attention 

and memory. This approach is now being tested in a small industry-funded clinical 

trial. Results from another recent breakthrough have shown that, contrary to prior 

belief, the nervous system retains the ability to make new neurons even in old 

adults. This research has uncovered environmental factors such as exercise that can 

increase the numbers of new brain neurons, improving memory function in adult 

mice. Studies are beginning to unravel the molecular steps that control the production of new neurons in different areas of the nervous system, including the spinal 

cord. These findings are major steps forward not only to enhancing nerve cell development, but also to replacing nerve cells lost through age, trauma, or disease. 

Major breakthroughs in our understanding and treatment of AD are coming from 

identifying the mutated genes responsible for early onset AD. In the more common 

late onset form of AD, a combination of risk factor genes and non-genetic factors 

seems to be key. In the early 1990s, APOE4 was identified as the first major risk 

factor gene for late onset AD. In the past year, three groups simultaneously discovered a region containing another risk factor gene on chromosome 10. Identifying this 

gene and other still unknown risk factor genes will lead to greater understanding 

of the molecular processes underlying AD, and will result in new treatment strategies, some of which will likely be tailored to an individual’s unique genetic profile. 

New risk factor genes will also lead to better prediction of a person’s individual genetic risk profile for AD. Strategies are being developed for large-scale collection of 

appropriate families and analysis of genetic data for these studies. 

DRUG DISCOVERY, DEVELOPMENT AND TESTING

The only currently FDA-approved treatments for AD are tacrine, donepezil, 

rivastigmine and galantamine, each of which boosts levels of acetylcholine, the 

chemical messenger involved in memory. However, there are currently many drugs 

at various stages of testing that have shown promise in either treating the symptoms associated with AD or slowing the progression of the disease. To screen as 

many potential drugs as possible, the NIA has developed the infrastructure for preclinical drug discovery and testing for drug safety in animals. Pilot and planning 

mechanisms have also been developed, along with NIMH and NINDS, to facilitate 

development of full-scale clinical trials, and this year, the first pilot clinical trials 

have been funded through this mechanism. 

NIA supports AD clinical trials through a variety of mechanisms. In addition to 

individual investigator-initiated clinical trials, the NIA supports the Alzheimer’s 

Disease Cooperative Study (ADCS), established to support multi-site clinical trials 

on compounds that large pharmaceutical companies generally would not test. The 

ADCS is also designed to develop and test new instruments for effective clinical 

trials. Several clinical trials now in progress are being supported by the NIA 

through the ADCS. The ADCS has also been key in developing standardized procedures and measurements in clinical trials, widely accepted in both academia and in 

industry. The ADCS will continue to be an important part of NIA support of largescale AD prevention trials as well as the search for biological markers for monitoring the efficacy of drugs in clinical trials. 

EARLY AD DIAGNOSIS

Much of our understanding of the clinical course of AD and the underlying brain 

pathology comes from longitudinal, interdisciplinary studies of persons with AD and 

normal controls. Many of these studies have been coordinated through the NIAfunded Alzheimer’s Disease Centers. A newly-funded collaborative infrastructure, 

the National Alzheimer’s Coordinating Center, is enhancing collaboration among the 

Centers to study important new areas of research. One such area involves understanding the preclinical stages of AD, a major new frontier in AD research and of 

the utmost importance in implementing future preventative treatments. 

Recent advances in imaging and in clinical and pathological assessment are focusing on identifying persons diagnosed with mild cognitive impairment (MCI) accompanied by memory impairment. Prevalence estimates show that there are as many 

persons with MCI as there are persons with a clinical diagnosis of AD. In one study, 

80 percent of persons diagnosed with MCI had developed clinically diagnosed AD 

within eight years. Distinguishing between persons with MCI who will and will not 

progress to AD is a critical objective. In a recently published study, the degree of 

impairment found in clinical assessment predicted those who would develop AD 

more rapidly; and in an imaging study of persons with MCI, the smaller a particular 

brain region at the beginning of the study, the greater the risk of developing AD 

later. (Chart #6) Abnormally low brain activity, identified by positron emission to-
19

mography (PET) scanning, may be able to identify abnormal patterns of activity predictive of later AD diagnosis earlier than other currently available tests. 

Besides their potential utility in early diagnosis, these imaging techniques are 

also being assessed for their ability to determine the effectiveness of early treatments or interventions, such as those being tested in the AD Prevention Initiative. 

Investigators believe that they may be more rapid and cost-effective indicators of 

treatment efficacy than conventional measurements. 

RISK AND PROTECTIVE FACTORS

Recent epidemiology studies focus attention on cardiovascular risk factors such as 

high blood pressure in middle age and elevated cholesterol as risk factors for AD. 

Further animal and human studies and clinical trials will be required to determine 

if AD and cardiovascular disease share common risk factors and possibly concurrent 

intervention strategies. One approach to identifying causal factors is to compare 

populations with very different life styles. One recent study showed that the rate 

of AD diagnosis was approximately half in an urban population of older Africans 

in Nigeria than it was in African Americans of Nigerian origin now living in Indianapolis. The Africans in the study had much lower prevalence of risk factors for cardiovascular disease such as high blood pressure, high cholesterol and diabetes than 

did the U.S. population. Future studies will pinpoint exactly which of these or other 

factors was responsible for the difference in AD development between the two 

groups. 

Early life environment has been implicated as a risk factor for several late life 

chronic diseases. Socioeconomic or environmental variables may affect brain growth 

and development, perhaps affecting the risk of developing AD in later life. Other 

life course variables such as exposure to environmental toxins or traumas may increase susceptibility to cognitive decline and neurodegenerative diseases in later life. 

One risk factor may be severe head injury, as shown by a recent study of World 

War II Veterans. Recent studies correlate a number of other variables including 

education, occupation, leisure mental activities and social support systems with the 

risk of cognitive decline or AD. Evidence that particular environments or lifestyles 

would reduce the risk or delay the onset of AD would have enormous implications 

for lifestyle changes to maximize healthy cognitive aging. Older Americans already 

have better education and health and are less disabled than in previous generations. 

It is possible that one or more of the above factors may already be causing a lower 

prevalence of severe cognitive decline in the elderly than would have been predicted 

from earlier studies. 

PATIENT CARE STRATEGIES AND CAREGIVER BURDEN

Perhaps one of the greatest costs of Alzheimer’s disease is the physical and emotional toll it takes on family, friends, and other caregivers. There is clearly a critical 

need to develop more effective behavioral and pharmacological strategies to treat 

and manage problem symptoms in people who have AD and to alleviate caregiver 

burden. This is one of the major goals of the NIH Alzheimer’s Prevention Initiative. 

(Chart #7) 

Agitation and sleep disturbance are two of the major behavior problems in AD patients that increase caregiver burden. Two clinical trials are determining whether 

drugs can reduce agitation in patients with AD. In another small trial, melatonin 

is being tested for reduction of sleep problems in patients with AD. In other studies 

focusing on elderly caregivers of patients with dementia, moderate-intensity exercise 

showed marked improvements in caregiver physiological reactions to stress and in 

sleep quality when compared to a control group maintained on a nutrition program. 

In another controlled trial, caregivers given web-based support experienced significantly reduced strain, while greater use of the support system resulted in lower 

strain among caregivers who lived alone with care receivers. To make the web more 

accessible to older caregivers, the NIA and National Library of Medicine are testing 

a senior-friendly web site model that features information about Alzheimer’s disease 

and caregiving. The project will be launched later this year. 

As part of the AD Prevention Initiative, the NIA, in collaboration with the National Institute of Nursing Research, is supporting the Resources for Enhancing Alzheimer’s Caregiver Health (REACH) initiative. This large, multi-site intervention 

trial is testing the effectiveness of different culturally sensitive home and community-based interventions for families providing care to loved ones with dementia. 

The interventions that are being tested include psychological education support 

groups, behavioral skills training, family-based systems interventions, environmental modifications, and technological computer-based information and communication services. Some 1,000 families are enrolled in the REACH study, including 
20

large numbers of African-Americans and Hispanics. Results from the REACH study 

will be available in the next year, and I look forward to sharing any significant advances with the Congress and the general public. 

In conclusion, the pace of scientific discovery in the area of Alzheimer’s disease 

research has further accelerated this year and optimism is growing that effective 

treatment may follow from the current generation of clinical trials. Much remains 

to be understood about the underlying causes of AD, and the NIA continues to support a spectrum of basic and clinical research aimed at comprehending the multifaceted factors interacting throughout the lifespan to cause AD. Only by understanding these varied factors will we be able to develop the most effective and safe 

strategies for defeating this much-feared scourge of later life. I am happy to answer 

any questions you may have at this time.

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Senator SPECTER. Well, thank you very much, Dr. Hodes. 

What can you tell us in concrete terms what has been done with 

the increase in funding? When the funds rose from $456 million in 

fiscal year 2000 to $520 million, what did that enable you to do to 

justify that increased expenditure? 

Dr. HODES. Well, I think, Senator, some of the concrete examples 

were portrayed in the information that I have shared with you. For 

example, the prevention trials. As noted, these trials take many 

years, many individuals. They are perhaps the most expensive form 

of research that we carry out. 
24

Individual trials of this sort may involve a cost in the range from 

$20 million to $40 million or $50 million. The ability to carry out 

these trials of the multiple agents, for each of which there was 

promise shown by past research, was facilitated, indeed, by the increase in the budget that NIH has enjoyed over past years. 

Equally so, the basic research described has been, to a large extent, enabled by the increase in budget and allocations through appropriations. 

Senator SPECTER. One of the questions, which understandably 

comes to this subcommittee repeatedly, from our colleagues, is are 

you just throwing money at the problem, or is it effectively used? 

If we are successful in increasing your budget from $520 million to 

$582 million, a $62 million increase, what would you project to use 

that additional funding for next year? 

Dr. HODES. I think we already are able to see in the applications 

we are receiving and in conversations and input from the scientific 

community, that the opportunities, both for basic science and for 

the generation of new clinical trials for treatment and prevention, 

are highly meritorious, have been reviewed as such, and will easily 

allow us to spend the magnitude of budget increase that you mentioned, continuing to find only the highest quality of outstanding 

applications. 

Senator SPECTER. Will easily allow us to spend? I am a little concerned with your articulation, Dr. Hodes, of ‘‘easily allow us to 

spend.’’ It is not too hard to spend. Are we getting the bang for the 

buck? 

Dr. HODES. Absolutely. The rest of the sentence was ‘‘easily allow 

us to spend supporting still the most outstanding caliber of research.’’ And so, yes, the direct response is that that amount of 

money would be spent, supporting the very highest quality of research. As noted, our success rate, that is, the proportion of applications we currently fund, is approximately 25 percent now. 

There are many applications we are not able to fund, which have 

high promise, as reviewed by peers, by experts in the field. When 

the question was raised and it is a critical question—3 years ago, 

when the proposal of doubling the NIH budget over 5 years, the 

question was raised whether we could, indeed, wisely and appropriately use these resources. 

I think that the experience of the past 3 years has indicated that 

indeed we can; that the research supported with this increased 

funding has been outstanding and highly meritorious. And I think 

every indication, the prospect for the years to come, is that we can 

continue this trend. 

Senator SPECTER. One of the questions which is customarily 

asked by the subcommittee, although very obviously very difficult 

to answer is: What are the prospects for finding the answer to Alzheimer’s? On Parkinson’s we have—after some question, had gotten 

comments from the experts at NIH that we may be within 5 years 

of conquering Parkinson’s. 

Now, it is put in ‘‘may’’ terms, not absolute terms. But could you 

give us a projection, if the funding is increased, as to the likelihood 

or some ballpark figure on time span when we might conquer Alzheimer’s? 
25

Dr. HODES. I truly and sincerely do not know, Senator. For example, the time that it takes to carry out studies, such as those 

which are now ongoing. If some of these studies were to be successful, we would know those answers in the range of the next 5 to 10 

years. 

From the point of such findings, there would still be a need then 

to look at how they generalize to the larger population. So, I can 

provide you, in that sense, only with the minimum, the amount of 

time it would take if the current interventions, the current trials 

under study, were to prove to be successful. 

We, unfortunately, as is the nature of science, particularly in biology, do not know if they will be, and for that reason, cannot provide even an informed and responsible estimate of how long I think 

it may be to arrive at an ultimate cure. 

Senator SPECTER. Well, I can understand that. You make a projection of 5 to 10 years where you will know what results the current studies will produce. To what extent is that period of 5 to 10 

years acceleratable by the increase in funding which we want to 

get for you next year? 

Dr. HODES. The increase in funding would make it possible to 

study a larger number of candidate agents; and as noted, the more 

doors open, the more paths taken, the greater the probability of 

finding, as rapidly as possible, the correct one. 

We do not have the luxury, in terms of these sorts of trials, in 

waiting until we have the outcome of one study before beginning 

the next. If we, in that sense, conducted a new study or a new set 

of studies only every 7 to 10 years, the path would undoubtedly be 

slowed beyond what we can accomplish with the resources we have, 

those we project, by being able to bring each promising candidate 

to clinical trial. 

Senator SPECTER. My red light just turned on. So, I am going to 

yield at this point, because of time pressures, and turn to Senator 

Harkin. 

Senator HARKIN. Thank you very much, Mr. Chairman. 

And Dr. Hodes, thanks for coming back to the committee and testifying and for your leadership at the National Institute on Aging. 

I have two paths, two questions. One has to do with the here and 

now and the immediate, in the REACH program, and—because I 

hear from so many families that are just at wits’ end in terms of 

how they are dealing with this. 

And if you could just elaborate a little bit more on what your 

plans are for the REACH initiative. And would that be part of the 

increases, aside from the basic research that we are doing, that you 

would envision? 

Dr. HODES. I would be happy to answer this important question. 

Clearly, research for the here and now—research involving the welfare of those who currently give care is as important as our research aimed at the future and prevention. 

The REACH initiative, which is a trial involving multiple centers 

and a diverse population, is exploring different means of reducing 

stress, providing respite for caregivers. The actual study has been 

completed, and it is now in its first stage in the state of data analysis. 
26

We would expect, over the next few months, to have that analysis completed and hope that its successes would then be translated into a future, next generation of intervention trials. The appropriations that will be available in the next year, would, in addition to the many other areas of research that we intend to pursue, 

allow us to follow-up on positive findings that may have come from 

this first stage of REACH to design further interventions to the 

benefit of caregivers and those for whom they care. 

Senator HARKIN. Thank you. Second, on the research side, how 

soon will you be going to human clinical trials on the vaccine? 

Dr. HODES. The clinical trials on the vaccine are currently being 

carried out by Elan Pharmaceuticals. These studies have progressed through the state of initial, so-called, phase one to determine if there are any toxicities. This intervention is now being 

taken to larger numbers of individuals in the so-called stage two 

or preliminary phase of clinical trials. 

We will be meeting and working with Elan in what we hope in 

the best spirit of public/private partnerships, as we attempt to facilitate the best and most rigorous quality of research from which 

we will learn the most about the effectiveness of this approach. 

Senator HARKIN. Okay. I like that. This is Elan? 

Dr. HODES. Yes. 

Senator HARKIN. Elan——

Dr. HODES [continuing]. Pharmaceutical. 

Senator HARKIN. Pharmaceutical. There are no other pharmaceuticals involved in this. 

Dr. HODES. Currently not. 

Senator HARKIN. I see. And this is a vaccine in which NIH had 

been very heavily involved, if I am not mistaken. 

Dr. HODES. Yes, sir. For example, the discovery of the gene——

Senator HARKIN. Yes. 

Dr. HODES [continuing]. The making of the animal models in 

which this was carried out, were NIH-supported. Some of these results that I have shown you about the vaccine in animal studies 

were supported by NIH, as well. 

Senator HARKIN. Yes. Now, again, I just want to be very clear 

about this. I believe in the public/private partnerships. They have 

brought us great drugs in the markets. 

I am not a scientist. Do I know how much promise this has? I 

do not know, but I have been reading about the initial stages of 

this and it looks like it holds a lot of promise. I do not know when 

the phase two trials will be done. Do you have any idea about that? 

Dr. HODES. My understanding is that patients are currently 

being accrued onto the phase two trial presently. 

Senator HARKIN. Do you know the length of time? Is it 2 years, 

3 years? What is it? Do you know? 

Dr. HODES. I do not know the specifics of the trial, but we can 

certainly find more information and come back to you for the 

record. 

Senator HARKIN. Well, I just want to state for the record that we 

have to move as rapidly as possible on these trials. And I want 

NIH to be involved to the maximum extent possible, but I just hope 

and trust that if these prove out and there is that kind of vaccine, 

that it is not so expensive that families cannot afford it once we 
27

develop it. And I intend, as long as I am here, and I am sure Senator Specter and others, we are going to keep a watchdog eye on 

this. 

Now, I believe that pharmaceuticals have got to make a good return. They are putting a lot of their money up. But nonetheless, 

we have put a lot of public involvement and a lot of the public’s 

money into this. And these drugs have got to be affordable when 

they come on the market. 

Thank you very much, Dr. Hodes. 

Senator SPECTER. Thank you very much, Senator Harkin. 

Senator Reid. 

Senator REID. Mr. Chairman, I would ask your permission and 

that of Senator Harkin to have my statement made part of the 

record as if read. 

Senator SPECTER. Without objection, your full statement will be 

made a part of the record. 

Senator REID. I apologize to you and the rest of the committee 

and the witnesses. I have a meeting I was supposed to be to at 10 

o’clock. But I wanted to come here to indicate how important this 

hearing is and to congratulate you and Senator Harkin for your 

continued efforts in trying to find some relief to this terrible disease. 

[The statement follows:] 

PREPARED STATEMENT OF SENATOR HARRY REID

Good morning Mr. Chairman, members of the Committee, and distinguished 

guests. 

I want to thank the Alzheimer’s Association and the families who are here today 

for their willingness to share their personal stories and insights. You bring an important voice and focus to our discussion today. 

My home state of Nevada has the fastest growing population in the country. In 

southern Nevada alone, one-half of the population is over the age of 65. Statistics 

predict that 10 percent of this group will develop Alzheimer’s Disease. 

I strongly support increasing the federal investment in basic and clinical research 

as the best avenue we have for solving the complex puzzle that is Alzheimer’s Disease. This investment will lead us toward better treatment and management of 

those affected by this progressive condition. 

However, until our research achievements provide a cure for Alzheimer’s Disease, 

I do not want us to forget the vital role played by family and professional caregivers 

who make it possible for Alzheimer’s Disease patients to remain in their homes as 

long as possible. 

When I am home in Nevada talking with young families, it is clear that the 

phrase ‘‘sandwich generation’’ is an apt term. These parents are squeezed emotionally and economically by the need to provide care both to their young children and 

to their aging parents. 

While it is clear that the longer Alzheimer’s patients can remain in their homes, 

the better they and their families cope with the condition, it is also clear that we 

must support programs such as the Administration of Aging grant program, which 

provides funding that allows states to make available needed respite care to families. 

The future demand for home health workers, respite care services, and family 

member support are going to be staggering. As we progress in our understanding 

about the cause and treatment of Alzheimer’s Disease, we need to also actively and 

responsibly support the family and professional caregivers who serve these patients.

Senator SPECTER. Thank you very much, Senator Reid. 

Thank you very much, Dr. Hodes. We very much appreciate your 

work at NIH. And we intend to do our very best to continue to give 

you financial assistance to move toward delaying, if not solving, 

Alzheimer’s disease. Thank you. 
28

I would like to call, now, Dr. DeKosky, Ms. Frey, Mr. Wagenaar, 

and Mr. Pierce. 

STATEMENT OF STEVEN T. DE KOSKY, M.D., PROFESSOR OF NEUROLOGY, PSYCHIATRY, NEUROBIOLOGY AND HUMAN GENETICS, 

AND DIRECTOR, ALZHEIMER’S DISEASE CENTER, UNIVERSITY OF 

PITTSBURGH MEDICAL CENTER 

Senator SPECTER. Our next witness is Dr. Steven DeKosky, director, Alzheimer’s Disease Research Center and director, Division of 

Geriatrics and Neuropsychiatry at the University of Pittsburgh’s 

School of Medicine. 

Dr. DeKosky chairs the National Medical and Scientific Advisory 

Board—Advisory Council for the Board of Directors of the Alzheimer’s Association; he also chairs the Professional Advisory 

Board of the Greater Pittsburgh Chapter of the Alzheimer’s Association; and his, perhaps, greatest accomplishment is the father of 

Ally DeKosky, who is one of my key staffers. 

Ally, are you here today? Would you mind standing, please? 

She is an extraordinary young woman, and the apple has not 

fallen far from the tree, Dr. DeKosky. We look forward to your testimony. 

Dr. DEKOSKY. Thank you, Senator. I would like to compliment 

you, by the way, not only on your perspicacity in picking personnel, 

but also on the quality of your staff. 

Senator SPECTER. How do you spell perspicacity, Dr. Dekosky? 

Dr. DEKOSKY. I will put it in the record, Senator. 

Senator Specter, Senator Harkin, and members of the subcommittee, I am very glad to be back before this committee to report on some truly amazing progress that has been made in AD 

over the past year, and to express our thanks for your steadfast efforts to double funding at the NIH, and make what we believe is 

a compelling case for an immediate and major additional investment to prevent the epidemic in Alzheimer’s disease. 

As you know, I head the Alzheimer’s Center at the University of 

Pittsburgh, one of 29 such centers in the United States, created by 

the NIA for—as an infrastructure for studying Alzheimer’s disease. 

And I am here today as Chair of the Medical and Scientific Advisory Council of the Alzheimer’s Association. 

The Association is calling upon Congress to double its investment 

in Alzheimer’s research to reach an annual funding level of $1 billion over the next 3 years. This will require an increase of $200 

million in fiscal year 2002. 

And we realize that if Congress agrees to the very tight spending 

caps that have been proposed in the pending budget resolutions, 

the subcommittee will have to make some very difficult choices 

about where to put the money. Why should that choice be Alzheimer’s research? 

The answer is simple and has two parts. First, demographics 

alone demand that we find a way to stop the progress of Alzheimer’s disease before it bankrupts us all. If we want to protect 

the surplus, assure the future of Medicare and Social Security, and 

leave money in the Federal budget for other urgent national priorities, we have to find a way to prevent 14 million baby boomers 

from getting this disease. 
29

Second, we can now say with confidence that the answers are 

within reach. We are at an unprecedented place in Alzheimer’s research, facing possibilities that did not exist when I first came before this committee in 1998. That is because of the investment you 

have already made, not just in AD research but in the human genome project, and imaging techniques, and in basic science. 

We will lose that investment, however, unless we escalate efforts 

in three broad areas of research: Large-scale clinical trials aimed 

at prevention; basic research to complete our understanding of the 

disease, risk factors, early detection, and potential treatments; and 

social and behavioral research to improve management of the disease and reduce its burden. 

The NIA continues to lead the war against AD. You have heard 

Dr. Hodes, who has been the able leader of this effort, but as our 

knowledge has expanded, the effort has attracted attention in resources from across the National Institutes of Health. The progress 

we have made in the last 12 months has truly been astounding, 

and investigators have identified multiple targets, multiple doors, 

as Senator Harkin put it, for further research, and new ones are 

emerging in laboratories across the country almost on a daily basis. 

In 1998, at this subcommittee’s direction, the NIH stepped into 

a whole new area of Alzheimer’s research, the Prevention Initiative. Based on a simple premise that scientists knew that changes 

in the brain begin 10 to 20 years before symptoms first appear. 

We began to change strategies, some of which you see on the 

board with the studies on prevention, which is now being organized, to look for ways to interfere with the process early, before 

symptoms occur, and slow it down or stop it. And if successful, we 

can keep people who are at risk from ever being disabled by the 

disease. 

The first of these prevention trials started in 1998. Eight are 

now in progress. Some are testing with early mild cognitive impairment, a memory disorder that appears to put people at increased 

risk of developing the disease. Most of these studies are testing relatively inexpensive and readily available compounds, including vitamins and over-the-counter drugs. We are looking for cheap and 

simple ways to stop this disease from draining billions from families, from State and Federal treasuries, and from our economy. 

But it takes time, as you can see, and money to do this kind of 

research. Because AD develops slowly, large numbers of people 

must be enrolled in these trials and they must be followed over 

time. 

For example, I am the principal investigator for a multi-site trial 

of ginkgo biloba funded by the National Center for Complementary 

Alternative Medicine, NHLBI, and the NIA. We are enrolling 3,000 

people over the age of 75 and will follow them for 5 years. This one 

study will cost at a range of $18 million to $20 million. 

All told, NIH is already investing over $80 million in these prevention trials, but we will need the money to start new trials soon, 

both to replicate those that are underway and test new compounds. 

We have a narrow window of time to make this work. 

We found lots of pieces to the puzzle, which is why the Prevention Initiative could get started, but we need to continue the basic 
30

research to complete that puzzle. Without these additional resources, we will have to rob Peter to pay Paul. 

In fact, one of the points that I think is very important is that 

since there have never been clinical trials to try and prevent Alzheimer’s disease, the monies to do all of these clinical trials simply 

come out of de novo budgets. 

The vaccine, we have already discussed. Imaging techniques in 

plaques of animals and duplicative experimental studies in imaging 

let us, we hope, be able to derive images of amyloid load in humans, while——

Senator SPECTER. Dr. DeKosky, your full statement will be made 

a part of the record. So, if you could summarize at this point, we 

would appreciate it. 

Dr. DEKOSKY. I think if you showed the pictures that Dr. Hodes 

showed you of the mouse to a researcher 5 years ago, they all 

would have broken their jaws when they hit the table. 

The knowledge of the basic science of what happens with amyloid 

in this disorder and the progress that we have made, both with 

mice and with men, is absolutely astounding. We have this disease, 

we think, on the ropes. And this is not a time to let up. 

Thank you. 

[The statement follows:] 

PREPARED STATEMENT OF DR. STEVEN T. DEKOSKY

Senator Specter, Senator Harkin, and Members of the Subcommittee. I am delighted to be back before the Subcommittee to report on the truly amazing progress 

in Alzheimer research over the past year, to express our thanks for your steadfast 

efforts to double funding at the National Institutes of Health, and to make what 

we believe is a compelling case for an immediate and major additional investment 

to prevent an epidemic of Alzheimer’s disease. 

As you know, I head the Alzheimer’s Disease Research Center at the University 

of Pittsburgh, one of 29 such centers funded by the National Institute on Aging to 

create an infrastructure for this critically important research. I am here today as 

the Chair of the Medical and Scientific Advisory Council for the Alzheimer’s Association. 

The Alzheimer’s Association is calling upon Congress to double its investment in 

Alzheimer research, to reach an annual funding level of $1 billion over the next 

three years. That will require an increase of $200 million in fiscal year 2002. We 

realize that if Congress agrees to the very tight spending caps that have been proposed in the pending budget resolutions, this Subcommittee will have to make very 

difficult choices about where to put the available funds. Why should that choice be 

Alzheimer research? 

The answer is simple and has two parts. First, demographics alone demand that 

we find a way to stop the progress of Alzheimer’s disease before it bankrupts us 

all. If we want to protect the surplus, assure the future of Medicare and Social Security, and leave room in the federal budget for other urgent national priorities, we 

must find a way to prevent 14 million babyboomers from getting Alzheimer’s disease. 

Second, we can now say with confidence that answers are within reach. We are 

at an unprecedented place in Alzheimer research—facing possibilities that just 

didn’t exist when I first came before this Subcommittee in 1998. That is because 

of the investment you have already made, not just in Alzheimer research but in the 

human genome project, in imaging techniques, and in basic science. 

We will lose that investment, however, unless we escalate our efforts in three 

broad areas of research: 

—large scale clinical trials aimed at prevention, 

—basic research to complete our understanding of the disease, risk factors, early 

detection, and potential treatments, and 

—social and behavioral research to improve management of the disease and to reduce the staggering health and long term care costs that are associated with 

it. 
31

The National Institute on Aging continues to lead the war against Alzheimer’s 

disease, under the very able leadership of Dr. Richard Hodes. But as our knowledge 

has expanded, this effort has attracted attention and resources from across the National Institutes of Health. The progress we have made in the past twelve months 

has been truly astounding. Investigators have identified multiple targets for further 

research and new ones are emerging in laboratories across the country, on an almost daily basis. 

THE PREVENTION INITIATIVE

In 1998, at this Subcommittee’s direction, the National Institutes of Health 

stepped into a whole new area of Alzheimer research—the Prevention Initiative. 

That initiative was based on a simple premise. Scientists could now say with some 

certainty that the changes in the brain that lead to Alzheimer’s begin 10 to 20 years 

before symptoms first appear. We began to change our strategies, to look for a ways 

to interfere with that process early, to slow it down and perhaps to stop it. If we 

succeed, we can keep most people who are at risk from ever being disabled by the 

disease. 

We were beginning to identify compounds that might do that, but they needed to 

be tested in large numbers of people to prove if they would really work. The first 

of those prevention trials got started in 1998; eight are now in progress. Some are 

testing compounds in people with mild cognitive impairment; others are enrolling 

older people who are cognitively normal. 

Most of these studies are testing relatively inexpensive and readily available compounds—including vitamins and over-the-counter drugs. We may be able to find 

cheap and simple ways to stop this disease from draining billions from families, 

from state and federal treasuries, and from our economy every year. 

But it takes time and money to do this kind of research. Because Alzheimer’s disease develops slowly, large numbers of people must be enrolled in these trials and 

they must be followed over time. For example, I am the principal investigator for 

a multi-site trial of gingko biloba funded by the National Center for Alternative 

Medicine. We are enrolling 3,000 people over the age of 75 who are not demented 

and will follow them for 5 years. This one study will cost $18 million. 

All told, NIH is already investing over $80 million in these prevention trials. But 

we will need the money to start more trials soon—both to replicate the findings of 

those already underway and to test new compounds that look equally promising. 

We have a very narrow window of time to make this prevention strategy work. 

In 10 years, the babyboomers will reach the age where the symptoms of Alzheimer’s 

disease begin to appear. If we haven’t found an answer by then, the numbers of people with the disease—and the costs of their care—will explode. We are in a Race 

against Time. 

COMPLETING THE PUZZLE

We have found a lot of the pieces of the puzzle of Alzheimer’s disease, which is 

why we could begin the Prevention Initiative. But we must continue the investment 

in basic research to complete that puzzle. Without additional resources, however, we 

will have to rob Peter to pay Paul. We are already seeing this in the declining ‘‘success rate’’ at the National Institute on Aging. Because the prevention trials are expensive, NIA is able to fund a lower percentage of the high quality research grants 

it receives. In 1997, NIA was funding almost 40 percent of the grants it received. 

In 2000, that success rate was down to about 26 percent. This means we are missing 

important opportunities to advance our knowledge of Alzheimer’s disease and to discover new targets for treatment. 

There are few areas of scientific research where the progress has been as rapid 

and far-reaching. The excitement that surrounds the science of Alzheimer’s disease 

was dramatized last summer at the World Alzheimer Congress here in Washington. 

That meeting drew over 3000 Alzheimer scientists from around the world—from 

Nobel Prize winners to new postdoctoral students. 

Consider just a few of the far-reaching discoveries that have been reported since 

the Subcommittee met about Alzheimer’s disease last year: 

—A ‘‘vaccine’’ has been developed that appears to prevent in the brains of mice 

the accumulation of the plaques that are the hallmarks of Alzheimer’s disease. 

Phase I clinical trials in humans have shown the vaccine to be safe. Phase II 

trials to test effectiveness will begin this year. 

—A new imaging technique has identified plaques in the brains of living mice—

something that until now could only be identified at autopsy. If that technique 

works in humans, we may have an important new tool for early and even presymptomatic identification of people for whom treatments will be effective. 
32

These mouse studies underscore the importance of animal models in Alzheimer research. They allow us to explore theories and potential treatments 

without putting human subjects at risk. But it is very expensive to develop and 

maintain these animal models. 

—We now understand the role of certain enzymes, called secretases, in the production of amyloid, a protein implicated in Alzheimer’s disease. That is the first 

step toward developing a compound that could block the production of the protein and the development of disease. 

—Discoveries about the role of nerve growth factor may open the way to protecting brain cells from damage and possibly rebuilding them. Work is already 

underway on a drug that may mimic the activity of nerve growth factor in the 

brain; another is exploring a therapy that would prompt brain cells to produce 

the protein. 

—Another essential area of Alzheimer research is the investigation of how genetic 

and environmental risk factors combine to produce disease. Even in identical 

twins, some get the disease and others do not. A new study of World War II 

veterans has produced importance evidence that establishes a clear link between serious head injury in early adulthood with Alzheimer’s disease in later 

life. 

One of the most important scientific questions involves the connection between 

vascular disease and Alzheimer’s. These vascular disorders include stroke, high 

blood pressure, aetherosclerosis, and diabetes. They disproportionately affect Hispanic and African-Americans—the largest growing segment of our elderly population. 

We now have evidence to suggest that risk factors associated with these disorders, 

including high cholesterol and high fat diets, may also be associated with increased 

risk for dementia. If that is true, we can do something about these risk factors and 

could have a major impact on future prevalence of the disease. 

—Two separate studies have shown that cholesterol-lowering drugs called statins 

may reduce the risk of Alzheimer’s disease. 

—Other research has suggested that a high-fat diet in early and middle adulthood 

may be associated with an increased risk of Alzheimer’s. 

—A new report, just in, on an 8-year cross-national study found the rate of dementia among African Americans to be twice that of residents of Nigeria. It suggests that environmental risk factors such as diet and exercise may combine 

with genetic risk factors to cause disease. 

There is an immediate need for investment in additional research to follow up on 

these leads, to determine the exact relationship between vascular disorders and Alzheimer’s. This will require additional basic research on molecular and cellular 

changes as well as large-scale population studies to test potential drug treatments 

and life style changes that can reduce the risk of both vascular disease and dementia. This is a particularly promising area for collaboration between the National Institute on Aging, the National Heart, Lung and Blood Institute, and the Center for 

Minority Health Research. 

THE CHANGING FACE OF ALZHEIMER’S DISEASE

However quickly we get to the finish line in the Race against Alzheimer’s disease, 

it will not be soon enough for millions of people for whom the disease process has 

already progressed too far. Some of those people are in this hearing room today—

including John Wagenaar who will testify in a moment. Frank Carlino, who testified 

before you last year, is also here and has brought with him a number of members 

of his support group. They have been raising money all year to come to Washington 

to ask Congress to do something about Alzheimer’s disease. 

These courageous people represent the new Face of Alzheimer’s Disease. We are 

identifying and diagnosing people at early stages of the disease—when available 

treatments are likely to be most effective and when they can have time to make 

decisions about how they and their families will live through the course of the disease. We need to continue the search for more effective treatments to stave off the 

most devastating impact of the disease, even if we can’t prevent it for them. And 

we need to educate both the public and clinicians, especially primary care physicians, about the importance of early diagnosis. 

We also need to make sure that our health and long term care systems will adapt 

to accommodate changing care needs. People will be living with the disease longer, 

and differently than they have in the past. Congress must invest in the social, behavioral, and health services research—not just at NIH but also at the Agency for 

Healthcare Research & Quality, the Health Care Financing Administration, and the 

Centers for Disease Control—to develop the outcomes measures, quality indicators, 
33

and other evidence that will support high quality and cost-effective care throughout 

the course of the disease. 

The Alzheimer’s Association will continue to its own investment in research. We 

have already budgeted over $20 million for research in fiscal year 2002. We will continue to provide the early money to encourage new researchers to the field, and to 

collaborate with the National Institute on Aging and other institutes at NIH in this 

all-important Race against Time. But we must turn to Congress for the $1 billion 

that we need to get to the finish line, before it is too late. 

Thank you for inviting me here again today.

Senator SPECTER. Thank you very much, Dr. DeKosky. 

STATEMENT OF CHRISTINE FREY, ADVOCATE, ALZHEIMER’S ASSOCIATION 

Senator SPECTER. We turn, now, to Ms. Christine Frey, a probation officer from Peoria, IL. Her family suffers from Early-Onset 

Alzheimer’s, a form of the disease that prematurely strikes patients 

in the fourth or fifth decade of their lives. To date, 32 members of 

Ms. Frey’s extended family, including her father, grandfather, aunt 

and uncle, have died as the result of Alzheimer’s disease. 

Ms. Frey is active in the Central Illinois chapter of the Alzheimer’s Association and organizes an annual fundraiser in Peoria 

for Alzheimer’s research. 

You certainly have had tremendous impact in your family, Ms. 

Frey. We welcome you here and look forward to your testimony. 

Ms. FREY. Thank you. Thank you very much, Senator Specter 

and Senator Harkin, for inviting me to testify at this hearing. I 

want to thank you, in advance, for your continued commitment and 

support to Alzheimer’s research and for your leadership in securing 

funding for the National Institutes of Health. I am very grateful for 

this opportunity to speak to you about an issue that has so deeply 

affected my family. 

My name is Christine Frey and my commitment and dedication 

to this cause is very personal, because this disease has claimed 

over 32 members of my family in just the last five generations. 

My family suffers from Early-Onset Alzheimer’s disease, meaning, we get it at a much earlier age. My great grandmother was 

35 years old and pregnant with the last of her seven children when 

she started to become easily confused. At 37, she was hospitalized. 

And by 39, she could no longer walk and could barely speak. She 

died at the age of 40. 

Both her mother and grandmother also had the disease, but at 

the time, they were declared insane and both died in mental institutions in their forties. Because of their ages, no one thought to 

consider Alzheimer’s as the cause of their illnesses. Of my great 

grandmother’s six siblings, three died of this disease, again, all in 

their forties. 

My grandfather, Joseph Esposito, a major in the Army, began 

showing symptoms of Alzheimer’s at the age of 37 and eventually 

took a medical retirement. At the age of 42, he was placed in a VA 

Hospital, where he remained until his death at the age of 55. Of 

his six siblings, four would eventually die from this disease. 

My dad, Robert Esposito, was the oldest of six children born to 

my grandfather, Joseph, and my grandmother, Adeline. All of his 

life, my dad was haunted by the knowledge that he, too, might 

carry the deadly gene that had plagued his family before him. Misplacing his car keys would send him into a month-long depression. 
34

And although every doctor he went to told him he just suffered 

from stress, he was convinced that he would get Alzheimer’s. Unfortunately, he was right. 

When I was in college——

Senator SPECTER. Take your time, Ms. Frey. Take a glass a 

water. 

Ms. FREY. When I was in college, he started showing signs of 

memory loss and confusion. He would get into his car, drive away, 

only to sit at a stop sign for 10 minutes, forget where he was going, 

give up, and return home. By 46, he was diagnosed——

Senator SPECTER. Ms. Frey, we understand the difficulty of the 

things you are talking about, so just take your time. 

Ms. FREY [continuing]. And at 51, he was dead. 

Three months later, his brother, Joey, passed away at the age of 

48. Four years earlier, his sister, Barb, died at the age of 47. His 

brother, Richard, although never formally diagnosed with the disease, was showing signs of Alzheimer’s when he committed suicide 

the day after Christmas in 1999. We believe he simply could not 

bear the thought of living the nightmare he had seen so many 

times before. 

The news of Richard’s death was delivered to me, along with the 

news that my Uncle Michael, my godfather, age 40, and my Aunt 

Jennifer, age 38, had just been diagnosed with the disease. Both 

are in the early to moderate stages of the disease today. 

My family has long been involved in the research to find a cure 

for this disease. My family is one of the case studies for the National Institutes of Health. And the research done on my family 

has helped to find the gene that causes Alzheimer’s. My family has 

donated blood, skin. And several members of my family, including 

my dad, donated their brains for research. 

Researchers have studied my family since the 1960s and have 

traced my family back as far as the 1700s. My sisters and I are 

on the list as possible research subjects and are committed to finding a cure. 

Every year I organize and hold a fundraiser to raise money for 

research. This year I hope to raise $3,000, which may seem inconsequential to some, but $3,000 might pay for that last test that 

would lead to a cure. And if I thought that raising money for research did not matter, then somebody else might think it does not 

matter, and then maybe you would not think it does not matter. 

But every dollar committed to Alzheimer’s research is worthwhile. 

Every dollar matters. And I will continue to do my part in raising 

money for research. 

By profession, I am an adult probation officer in Peoria, IL. I currently supervise 170 clients, which would tax any normal person’s 

memory. I try not to follow in my father’s footsteps, but with a history like mine, it sometimes makes me wonder, when I cannot put 

a face to a name or when I cannot remember certain information 

about my clients. I truly believe that my occasional forgetfulness is 

brought on by doing too many things at once, but there is always 

that little voice in the back of my mind telling me otherwise. 

The average age of diagnosis in my family in 39, and I am 31. 

My thoughts are of nursing home and long-term care policies, and 
35

whether or not my husband should divorce me if I get sick, so that 

he does not go bankrupt trying to take care of me. 

My thoughts are of trying to start a family right away, so that 

I have more time to spend with my kids in case I get sick. My 

thoughts are with my 33-year-old sister, who has two kids and one 

on the way, and whether she will see them graduate from high 

school or college or get married. My thoughts are with my 24-yearold sister, who is starting her adult life and has so much to look 

forward to. My thoughts are with my mom, who might be the only 

one left to tell our children who we really were. 

Strangely, I imagine the only thing worse than actually having 

this disease would be the guilt of the family members who were 

spared and the sorrow of people like my grandmother, Adeline, who 

had to watch helplessly as generation after generation after generation after generation died one by one. 

We need this funding now, to find the cure in time, so that she 

will be spared the pain of watching my generation die, too. 

Thank you. 

[The statement follows:]

PREPARED STATEMENT OF CHRISTINE FREY

Thank you very much Senator Specter and Senator Harkin for inviting me to testify at this hearing. I am grateful for this opportunity to speak to you about an issue 

that is very dear to me. 

My name is Christine Frey and I live in Peoria, Illinois. In my professional life, 

I am a probation officer for the State of Illinois. I have been a probation officer for 

the last six and a half years. My work is very rewarding and challenging. Right 

now, I have a caseload of 170 clients. 

In my other life, I advocate for increased funding for Alzheimer research. My dedication to this cause is deeply personal. My family suffers from what is known as 

Early-Onset Alzheimer’s disease. Nearly six years ago, my dad, Robert Esposito, 

passed away from Alzheimer’s disease at the age of 51. He was diagnosed with Alzheimer’s at age 46 and my stepmother, who had Multiple Sclerosis, took care of him 

at home for 2 years. He spent the last 3 years of his life in a nursing home. I was 

in college when my dad was diagnosed but he had the signs of Alzheimer’s for some 

time before he actually received his diagnosis. I would call home from school and 

talk to my dad and I knew something was wrong with him. He underwent a lot of 

testing but the doctors told him that he was just suffering from stress. My dad however, was convinced that he had Alzheimer’s. He had a good reason to be. 

You see, my dad’s younger brother, Joey, had also been diagnosed with Alzheimer’s. He died three months after my dad. He was 49 years old. My dad’s sister, 

Barb, died of Alzheimer’s in 1987 at age 43. My dad’s other brother, Richard, died 

the day after Christmas in 1999 at the age of 44. Although he was never positively 

diagnosed with Alzheimer’s, he committed suicide due to the stress of watching his 

brothers and sisters succumb to this terrible disease. My father’s remaining siblings, 

Michael and Jennifer were both diagnosed with Alzheimer’s in 1999. Michael was 

40 when he received his diagnosis and Jennifer was only 38 when she got hers. My 

dad’s father, Major Joseph Esposito, died in his early 50’s after suffering from Alzheimer’s for 12 years, the last ten of which were spent in a nursing home. Of my 

grandfather’s six siblings, four died from Alzheimer’s. My great-grandmother also 

had Alzheimer’s but because of her young age when she was diagnosed, the doctors 

thought she was insane and she was put in an asylum. 

My family is one of the American case studies at the National Institutes of Health 

(NIH). My mom and dad participated in NIH research, as did all of my aunts and 

uncles. When my dad died, we donated his brain to NIH for further research. My 

two sisters and I are currently on the list for future research subjects. In fact, one 

of the genes that is associated with Alzheimer’s was found in part by the research 

done on my family. The NIH has traced my family tree back through America, Italy 

and France and has found at least 32 members who died of Alzheimer’s disease over 

the last five generations. The average age of diagnosis of Alzheimer’s in my family 

is 39. I am 31 years old. 
36

In 1996, I got married and I cried all the way down the aisle because my dad 

was not there to give me away. My husband Mike and I really want to have children 

but we feel like we are in a race against time because of Alzheimer’s disease. It 

scares me that if we do not have kids soon, I might not be around to see my children 

enter high school, let alone get married. I do not want my husband to have to explain to our nine-year old that mommy can’t come to his or her soccer game because 

she is in a nursing home. At age 31, I should be excited about my future. Instead 

I am thinking about long term care insurance policies and nursing homes. I’ve already told my husband that he should divorce me if I get Alzheimer’s because I 

don’t want him to go broke taking care of me. Three years ago, when I was 28, I 

looked into buying a long term care insurance policy. The agents I talked to told 

me I was too young to buy a policy and said to call back when I turned 30. Because 

of my family history, it is not clear that anyone would even sell me a policy. 

My husband and I both have good jobs and we work hard. We are trying to plan 

for our future but there are things we want to do today while we are still young. 

Most other couples our age are going on exotic vacations or saving for their first 

house. It’s hard to look at our budget each month and know that we should be putting money aside in case I get Alzheimer’s. A few months ago I really wanted to 

buy a new chair for our living room but we decided that we should hold off on the 

expense for now. 

Over the last few years, I have spent a lot of time talking to doctors in Chicago 

and Springfield. I have also talked to researchers at NIH. Everyone I have talked 

to is excited about the pace of Alzheimer research right now. I have read news articles that talk of preventing Alzheimer’s and I pray that science will find the answers. I pray not only for myself and my family, but also for the millions of babyboomers who will soon be entering the age of increased risk for Alzheimer’s. We 

need to make a huge investment in Alzheimer research because if we do not, we 

will be paying for this disease a hundred times over. 

Every year for the last few years I have organized a fundraiser in my dad’s name 

to raise money for Alzheimer research. The first year I did the fundraiser it was 

a lot of work and we only raised $1,700. I almost didn’t do it again the next year 

because I figured that doing all of that work to raise so little money didn’t make 

any sense. But then I started thinking about my family, particularly my two and 

a half-year-old niece. Will her mother, my 33-year-old sister, be around to watch her 

daughter grow up? What about my 24-year-old sister? Will she get Alzheimer’s too? 

Alzheimer’s disease terrifies me but the one thing I am most scared about is what 

if my two sisters get it and I do not? I could not deal with that. 

So Senators, I will continue to hold the fundraiser in honor of my dad because 

I cannot afford not to contribute to the fight against Alzheimer’s disease. There is 

too much at stake not only for me personally, but also for millions of other Alzheimer families. I am here today to thank you for your commitment to Alzheimer 

research and for your leadership in securing funding for the National Institutes of 

Health. I will continue to do my part to raise money for research and I ask you to 

remember my family as you make future decisions about funding for the NIH. 

Thank you for taking the time to listen to my story. And thank you for holding 

this hearing to educate your colleagues and the rest of the country about the importance of investing in Alzheimer research.

Senator SPECTER. Ms. Frey, we really very, very much appreciate 

your coming in. Obviously, it is very difficult for you to talk about 

what has happened to your family. It has been extraordinarily debilitating and devastating to your family. I can see why you worry. 

I can see why, understandably, you are very emotional about it. 

And that, as the expression goes, puts a face on Alzheimer’s in 

a way which the statistics and generalizations cannot do. So, we 

thank you for coming here today and sharing that experience with 

us. 

Ms. FREY. Thank you for having me. 

STATEMENT OF JOHN WAGENAAR, PATIENT, ALZHEIMER’S DISEASE 

Senator SPECTER. Our next witness is Mr. John Wagenaar, diagnosed with Alzheimer’s in 1998. With substantial help from his 

wife, Darlene—40 years married—his children, grandchildren, em-
37

ployer, and co-workers, Mr. Wagenaar continues to lead an active 

life in George, IA. 

He is an advocate for Alzheimer’s disease research and is active 

in the Sioux City chapter of the Alzheimer’s Association. 

Thank you for coming in, Mr. Wagenaar, and telling us your own 

personal experience to help us better understand this terrible ailment. 

Mr. WAGENAAR. Thank you very much. It is a pleasure being 

here. I am John Wagenaar. And 3 years ago I worked at a factory 

that was just right across the highway from us. We lived right 

along the highway. I went to work that morning and there was one 

certain part of the plant that was brand new. 

I had to check the plant in the mornings, first, when I got there 

for—if there was any trash laying around or if the dumpsters were 

out of place or—I tidied the place up was my job, first. 

So, then, I got that done. I walked into this new part of the 

building and it was just like the lights went out. I just—I didn’t 

remember a thing. I walked and I walked and couldn’t get my way 

out of that building. 

Then toward noon, we decided—had to go to—we would walk 

home and have dinner, me and my wife. They had noticed, in the 

plant, then, that there was something wrong with me. They 

thought that I had a stroke. So, we walked home; walked across 

the highway, a busy highway, to get the mail. I do not remember 

it. Had my dinner. I do not remember it. 

But as soon as—we have our medical doctor—I mean, nurse at 

the plant, and when I took off just walking across the highway, 

then Darlene had called the nurse in the plant. They checked me 

over right away and took me with the ambulance to the nearest 

hospital. They put me on oxygen, which the further we got down 

the road, the better I started to recognize a little bit. But at that 

time, when we got there, there was—they did a lot of tests and 

stuff, and then they—the next day they sent me on to Sioux City 

to check things out. 

While we were in Orange City, they checked everything and it 

was all done. They—my son and my daughter and their spouses 

and my wife was along. They took her in a separate room and with 

the—with the kids. They said that I had—they told the family, 

first, that I had Alzheimer’s. 

Then he come to my room, and he says, ‘‘You have Alzheimer’s. 

Expect 1 to 3 years.’’ That did not—did not hit good, but we—oh, 

to drop this on you, he said 1 to 3. Well, about 3 weeks ago, I hit 

number 3, plus 3. So, I am ahead of it, if I can just keep going. 

But when something like that happens and you get—you get 

your stuff in order, because the time could be short, it could be 

long. So, we—I had a toy collection that—half the basement was 

not walkable. It was full. We had over 600 tractors in there. The 

two boys—I also have a son that lives in Anchorage, AL. So, when 

he—we called him and he says, ‘‘Go ahead and sell it.’’ That’s the 

most honest way, because you hand a couple of pieces to this child 

and you hand some to that child. So, anyway, we got all the stuff 

out of the basement. We went to a community building. And we 

had a sale on Friday night. And then we had a sale all day Saturday. 
38

So since that—after that was over with, I thought, now is the 

time to—to buy a house. I owned houses before, but we was renting 

at the time. So, we found a house and we got that. 

My son, up in Alaska, has a new motor home. And when we—

we flew up there. And then he gave us a ride back to George, IA. 

It was a little over 8 hours—or 8 days, continuous. We had three 

grandsons with us. So, we would stop early at night, so they could 

go swimming. And later in the morning we would leave again. 

So, to make the long story short, the lights have not gone out yet 

on me. I am going to stay one ahead of that switch. But while I 

am still able, I want to do whatever I can to speak out for Alzheimer’s disease. I have traveled to Washington to meet my Senators and Representative. I am testifying today to urge you to continue to investigate Alzheimer’s research, so that we can spare my 

children and grandchildren and others from the disease. We are in 

a race against time. And if we do not find the answer soon, Alzheimer’s will be an epidemic. 

Thank you so much for giving me the opportunity to speak to you 

today. 

[The statement follows:]

PREPARED STATEMENT OF JOHN WAGENAAR

Thank you very much Senator Specter and particularly Senator Harkin for giving 

me the opportunity to speak to you this morning. I am truly honored to be here. 

My name is John Wagenaar and I am a proud resident of George, Iowa. For those 

not familiar with Iowa geography, George is a small community of a few thousand 

people in the northwest corner of the state. With me today is my beautiful wife, 

Darlene. We will celebrate our 41st wedding anniversary this May. We have three 

grown children—a son and daughter who live in Iowa and a son who is in Alaska. 

We also are blessed with eight wonderful grandsons and one adorable granddaughter. 

Despite these blessings, our family is facing some challenges. Three years ago, in 

March of 1998, I was diagnosed with Alzheimer’s disease. I was 60 years old. My 

problems actually started about five months before I received my diagnosis. I was 

on vacation with Darlene. We had taken our trailer on a camping trip to South Dakota. I had trouble backing into our camping spot which was very unusual because 

I was an expert at parking the trailer. The whole time we were camping Darlene 

kept asking me if I felt sick because I was very quiet and was not my usual bubbly 

self. Even before we went on vacation, I remember feeling more tired than usual 

around that time. I would come home from work at night, have supper and then 

fall asleep right away. Sometimes I would sit in my favorite chair and stare off with 

a blank look on my face. I was losing weight as well and our friends were asking 

Darlene if something was wrong with me because I didn’t look good. I went to the 

doctor and had a complete physical but the exam didn’t find anything wrong with 

me. 

Several weeks after my physical, I got up one morning and went to my job at the 

DEMCO manufacturing plant in Boyden, Iowa as I had done everyday for the past 

11 years. Sometime that morning, I got lost in the plant’s new addition. I knew 

something was wrong with me. Darlene thought maybe I had had a stroke so she 

called the nurse at the plant. I spent that night under observation in the local hospital but the doctors concluded that I had not had a stroke. The next day I went 

to a larger hospital in Sioux City. I saw a neurologist, had a CAT scan and underwent many tests. A few days later the neurologist called me, my wife and family 

in to her office and told us that I had Alzheimer’s disease. We looked at the CAT 

scan which showed that my brain was shrinking away from my skull. I left the hospital devastated at the news. I took some time off work and went to see my son 

who lives in Alaska because I figured that it might be my last chance to make the 

trip. 

Today, my life is a little more calm than it was in the days immediately following 

my diagnosis. I am still working at the DEMCO plant. My employer has been incredibly sympathetic, supportive and understanding over the last three years. I was 

able to adjust my schedule so that I can work a later shift. Darlene works at the 
39

plant with me and switched from a part time job to a full time position so she can 

watch out for me at work. The plant manufactures car caddies, like the kind you 

pull behind motor homes, farm machinery, grain carts, tow bars and some chemical 

sprayers. It’s a busy place but my coworkers look out for me and I can ask them 

questions anytime I’m not sure about what I am doing or how to use a machine. 

That’s what Alzheimer’s does to you—it makes you unsure of yourself and sometimes you can get in dangerous situations and get hurt. A few months ago we got 

a new computer system to replace the time clock that we used to record when we 

started a job and when we finished one. My coworkers help me push the right buttons so that I record my work properly. 

I am on the Alzheimer’s drug Aricept and it has made a huge difference. I felt 

better and more like my old immediately after I started taking it. Once I forgot to 

take my pill and I could tell the next day because I wasn’t as talkative as usual. 

Darlene noticed too and now she reminds me to take my pill every night. Even 

though the Aricept is helping me now, the doctors have told me that it is not a cure 

and that it will not stop Alzheimer’s disease. 

I still drive but only when someone else, like Darlene, is in the car with me. Mostly I drive the 12 miles from our house to work and back. Darlene and I are both 

active with the Alzheimer’s Association chapter in Sioux City. Last year we participated in their Memory Walk with a group of members from our church. I was so 

pleased that members of the church did the walk with us. The Alzheimer’s Association in Sioux City has been wonderful to us as well. One of the people who works 

there came to DEMCO to talk to everyone about Alzheimer’s disease because most 

of my coworkers didn’t know what it was or what was happening to me. Some of 

them wouldn’t even talk to me when I told them I had it. The presentation that 

the Association person made to my coworkers was very helpful and helped them understand more about the disease. They learned how they could help me at work and 

keep me safe. 

While I am still able, I want to do whatever I can to speak out about Alzheimer’s 

disease. I have traveled to Washington to meet with my Senators and Representatives and I am testifying here today to urge you to continue the investment in Alzheimer research so that we can spare my children and grandchildren and others 

from this devastating disease. We are in a race against time and if we don’t find 

the answers soon, Alzheimer’s will be an epidemic. Darlene is truly my angel and 

I am grateful that she is in my life. Perhaps the best thing to come of this terrible 

experience is that our love for each other has grown deeper. But we know what the 

future holds and I would do anything to spare her from the years of caregiving she 

is facing. If the research can proceed fast enough, there may be something that will 

make a difference for me, but I pray that the discoveries will come in time for the 

next generation. 

Thank you so much for giving me the opportunity to speak to you today.

Senator SPECTER. Thank you very much, Mr. Wagenaar. We appreciate your coming in and telling us of your own personal experience. And we agree with you that if we do not act, it will be an 

epidemic. But we are going to do our very best to respond to the 

needs of the research community. 

STATEMENT OF DAVID HYDE PIERCE, ADVOCATE, ALZHEIMER’S DISEASE 

Senator SPECTER. Our final witness is Mr. Hyde Pierce, best 

known for his role as Niles Crane in the hit NBC series ‘‘Frazier,’’ 

for which he has won an Emmy and Screen Actors’ Guild Awards. 

Mr. Hyde Pierce has been actively involved with the Alzheimer’s 

Association for years, serving on the National Board of Directors. 

His personal fight stems from his father and grandfather’s struggles with the disease. He helped raise some $15 million for the 

1999 Alzheimer’s Association’s Memory Wall. In March 1999, he 

was awarded the first ever Elsa Rose Fabares Award given by the 

Los Angeles chapter of Alzheimer’s Association. 

Thank you for joining us, and we look forward to your testimony. 

Mr. HYDE PIERCE. Thank you, Mr. Chairman. Thank you, members of the subcommittee. 
40

I am very proud to be testifying today, but I am especially proud 

to be able to be here to hear the testimony of these extraordinary 

people who are sitting next to me. 

I am here today on behalf of millions of families, like mine, 

across America, who have confronted the challenge of Alzheimer’s 

disease. I am also here on behalf of the 14 million people of my 

generation, the baby boom generation, and their families, who, 

right now, have a death sentence of Alzheimer’s looming in their 

future. 

I want to thank you both for your extraordinary work in helping 

to double the funding for the NIH. And please know that the Alzheimer’s Association is here on Capitol Hill en masse today to help 

make sure that your colleagues are following your lead. 

Two of our friends who are not here today wanted to express 

their thanks and send their wishes; Shelley Fabares, who is, as you 

know, recovering from liver transplant surgery at home, and 

Maureen Reagan, who is fighting her own personal battle now with 

malignant melanoma. 

And Senator, you mentioned before the idea of throwing money 

at a problem. Well, Maureen said to me before I came out, she said, 

‘‘You know how you cannot throw money at a problem? Well, you 

can with Alzheimer’s. And you have to.’’

And there are three compelling reasons why I believe that is 

true. The first reason is just basic human decency. We have to stop 

what is happening to people like Chris and John, here. 

The second is the promising research that Dr. DeKosky and Dr. 

Hodes have referred to, and all the breakthroughs that we have 

had so recently. 

The third is basic economics. If Alzheimer’s is not stopped in its 

track, it will bankrupt the nation, just as it is now bankrupting 

families across the nation. 

This morning, the Alzheimer’s Association is releasing a report 

on the cost of Alzheimer’s disease to Medicare and Medicaid. And 

I would like to offer a copy of that report for the record. 

Last year, Medicare spent $31.9 billion to care for beneficiaries 

who had Alzheimer’s. That cost will rise to $49.3 billion by the year 

2010, an increase of 54.5 percent. 

And as for Medicaid, last year, the States spent $18.2 billion just 

on nursing home care for people with Alzheimer’s disease. And by 

2010, the cost will be $33 billion, an 81.3 percent increase. 

The shocking part of these projections is that all of these huge 

costs, all of these huge increases occur before the baby boomers hit 

the age of maximum risk and the number of people with this disease explodes. 

We cannot go on like this. We cannot sustain these skyrocketing 

human and financial costs to families and Federal and State budgets. And fortunately, we do not have to. But we have a very narrow 

window of time in which to act. Half of us in this room today already have the time bomb of Alzheimer’s disease ticking in our 

brain. 

Congress has to find a way to diffuse that time bomb, or it will 

destroy us. 

I do not know if you all remember polio, but I do not. Fifty years 

ago polio was the dread disease that threatened every American 
41

family; that struck down presidents and factory workers alike. And 

today most of us only know about polio from the history books. 

Two of the scientists who helped develop the polio vaccine, Dr. 

Joseph Melnick and Dr. Dorothy Horseman, died last year of Alzheimer’s disease. If only we can do for Alzheimer’s what they were 

able to do for polio. 

I believe, with your leadership and our advocacy, that we can. I 

believe that we will reach the day when young people, like Christine, no longer have to live in fear of the terror of Alzheimer’s disease. And I hope, for all of our sakes, that that day comes soon. 

Thank you. 

[The statement follows:]

PREPARED STATEMENT OF DAVID HYDE PIERCE

Mr. Chairman and Members of the Subcommittee, thank you for inviting me. I 

am here today on behalf of millions of families like mine from across the United 

States who have confronted the challenge of Alzheimer’s disease. Even more, I am 

here for the 14 million babyboomers and their families who, right now, have a death 

sentence of Alzheimer’s disease looming in their future. 

For all of them, I say thank you, Senator Specter and Senator Harkin, for your 

steadfastness in leading the fight to double funding for the National Institutes of 

Health. And for holding your colleagues feet to the fire. The Alzheimer’s Association 

is here on Capitol Hill today, en masse, to meet with our own Senators and Representatives to make sure they are following your lead. 

As Dr. DeKosky already told you, the Association is asking Congress to escalate 

the war on Alzheimer’s disease, by increasing funding to $1 billion within three 

years. That will require an increased investment of $200 million this year. I am 

here to add my voice to the eloquent testimony you have already heard about the 

urgency of this request. 

My grandfather and my father died of Alzheimer’s disease. That is why I got involved in the Alzheimer’s Association. I stay involved because of the incredible people who have dedicated their lives to fighting this disease. Some are well known—

people like Shelley Fabares and Maureen Reagan who have testified before you in 

the past. 

(As an aside, I recently visited Maureen Reagan, who as you know is fighting her 

own personal battle with malignant melanoma. I am happy to report she is doing 

well and her prognosis is good. She asked me to tell you she is disappointed that 

she couldn’t be here today—but to warn you that she will be back, to work with 

you until we conquer the disease that has stolen her father from us all.) 

The real heroes, however, are not the celebrities. They are all the people from the 

Alzheimer’s Association sitting behind me, and the two courageous people sitting 

here at the witness table with me. Each of us has a personal story to tell about the 

devastation of Alzheimer’s. Undoubtedly, members of this Subcommittee could add 

their own accounts of family or friends whose lives were fundamentally altered by 

this awful killer. 

There are three compelling reasons why Congress must accelerate its investment 

in Alzheimer research now. 

The first reason is just basic human decency. We need to put a stop to the kinds 

of stories you heard from Christine Frey and John Wagenaar. 

The second reason is the scientific opportunity that Dr. Hodes and Dr. DeKosky 

discussed. 

The third reason, which I want to talk about, is basic economics. 

This Congress is engaged right now in a far-ranging debate about how we will 

use the projected budget surplus. That is a discussion about our future—how to pay 

down the national debt, how to preserve Medicare and Social Security, how to protect sufficient discretionary spending to meet our urgent national priorities. 

But unless we stop Alzheimer’s disease in its tracks, we will not be able to answer 

any of those questions adequately. Because Alzheimer’s disease will bankrupt the 

nation, just as it is already bankrupting individual families. 

This morning, the Alzheimer’s Association is releasing a startling report on the 

cost of Alzheimer’s disease to Medicare and Medicaid. It is a wakeup call to us all. 

(I would like to offer a copy of that report for the record.) 

When you look at the numbers, it is hard to see how you can protect the Medicare 

trust fund if we don’t find a way to stop Alzheimer’s disease. Last year, Medicare 
42

spent $31.9 billion to care for beneficiaries who had Alzheimer’s. That cost will be 

$49.3 billion by 2010, an increase of 54.5 percent. 

The numbers are just as frightening when we look at Medicaid. Because Medicare 

does not pay for prescription drugs or long term care, nearly half of beneficiaries 

with Alzheimer’s disease use up their personal resources and become eligible for 

Medicaid as well. Last year, the states spent $18.2 billion, just on nursing home 

care for people with Alzheimer’s disease. By 2010, the cost will be $33 billion—an 

81.3 percent increase. 

The most alarming part of these projections is that these very large cost increases 

come even before the baby boomers reach the age of risk, and the number of people 

with Alzheimer’s disease explodes. Neither Medicare nor Medicaid will be able to 

survive the onslaught of 14 million babyboomers with Alzheimer’s disease. 

The only reason that Alzheimer’s has not already bankrupted Medicare and Medicaid is that those programs don’t pay for much of the care a person with Alzheimer’s needs. We rely heavily on families, to provide most of that day to day care. 

But we are incurring a lot of collateral damage. One in eight Alzheimer caregivers 

becomes ill or injured as a direct result of caregiving. Older caregivers are three 

times more likely to become clinically depressed than others in their age group. And 

elderly spouses strained by caregiving are 63 percent more likely to die than others 

their age. 

We simply cannot go on like this. We cannot sustain these skyrocketing costs—

to families or to federal and state budgets. The good news is that we don’t have to 

do so. 

But our window of time is very short. Half of us in the room already have a time 

bomb ticking away in our brains, each and every day. Congress must find a way 

to defuse this bomb, before it destroys us. 

The possibilities have never been greater. Think about what we did with polio. 

Fifty years ago, polio was the dread disease that terrified every American family. 

It struck down Presidents and factory workers alike. Today, most of us know about 

polio only from the history books. 

Two of the scientists who helped develop the polio vaccine died this year—they 

both had Alzheimer’s disease. If only we can do for Alzheimer’s what they did for 

polio. I know, with your leadership and our advocacy, we can. I believe that we will 

reach the day when young people like Christine Frey and her sisters won’t live with 

the terror of Alzheimer’s disease. They will only read about it in the history books. 

I hope that day comes soon. 

Mr. Chairman, the Association has made a strong case for research in its National 

Public Policy Program to Conquer Alzheimer’s Disease. I request that the text of the 

program be inserted in the hearing record. 

I would also like to take a moment to thank the Subcommittee and urge its continued support for two programs that are providing immediate help to people who 

are living with Alzheimer’s disease. We urge you to fund further expansion of the 

Alzheimer matching grant program, to support model programs to reach underserved communities, particularly minority populations and rural areas. And we support continued full funding of the $125 million Family Caregiver Support Program. 

Let me close by reiterating my personal thanks and that of the entire Alzheimer’s 

Association for your continued leadership in the fight to conquer Alzheimer’s disease. Each of us pledges to intensify our own advocacy in support of your efforts. 

Thank you for the privilege of testifying today.

Senator SPECTER. Thank you very much, Mr. Hyde Pierce. You 

characterize it very well when you refer to polio. That is a disease, 

at least in the United States, which has been conquered. It is 

worth mention that it has not been conquered worldwide. 

Mr. HYDE PIERCE. No, that is true. 

Senator SPECTER. I had occasion to be in India recently, and was 

asked to administer some polio vaccine to babies in India. Quite an 

experience to do that. It really brings it home how a few drops 

placed in an infant’s mouth can immunize the child from the onset 

of polio. 

I recall the problem growing up in Wichita, KS. We could not go 

swimming in the summer, because it was thought that that would 

subject someone to the problem of polio. 

Thank you for your testimony. We very much appreciate Ms. 

Frey sharing with us her family’s experience; and Mr. Wagenaar, 
43

his own personal experience and obviously the difficulties in coming here; and you, too, Mr. Hyde Pierce, who have had the family 

problem. 

I want to ask Dr. DeKosky just one line of questioning. Alz- heimer’s is interested in having an increase of $200 million in fiscal 

year 2002. I believe that health is number one. There is nothing 

more important than health. As we have seen in this subcommittee, with the variety of illness which we have hearings on, 

it is really, really heartbreaking. When you ask for $200 million, 

I would like to see you get $200 million, but I do not know quite 

how to square that with what we are seeking to do on other ailments. 

If we are successful in getting a budget increase of $3,400,000,000, right now—the administration budget is at 

$2,750,000,000, that projects to an administration increase of $62 

million for Alzheimer’s disease—we would have to do more than 

triple the overall award, which would be in excess of $10 billion for 

this year. And candidly, my colleagues are not very happy about 

what Senator Harkin and I are doing by putting in the money we 

have. 

We tried for $1 billion a few years ago and were turned down. So, the next year we tried for $2 billion and were turned down. 

And the next year we tried for $2.3 billion and were turned down. 

Finally, we went for $2.7 billion and we won. I will not give you 

all of the statistics, but I think, this year, when we ask for $3.4 

billion, we will win. But I think even our winning streak or our 

abilities to get the funding would balk at $10 billion. 

Now, I know, Dr. DeKosky, you do not suggest that we rob Peter 

to pay Paul, as you stated earlier in your testimony, or take it from 

somewhere else. And the allocation is really the job of NIH. They 

make the determination on a non-political basis as to how the 

money ought to be allocated. 

If you were sitting in my chair, Dr. DeKosky, and with that background in mind, how would you respond to—Senator DeKosky, how 

would you respond to Dr. Specter’s request for $200 million? I just 

demoted you and promoted me. 

Dr. DEKOSKY. My first thought would be Aunt Rose would give 

me the money. My second thought has to do with the issue of the 

future and having the investment to put back into the Federal 

budget, instead of having to spend money taking care of people as 

the programs that are on the rise, even before the boomers hit 

their age of high risk, causes us to lose. This, I see, rather than 

an open-ended issue, being more of an investment. 

We have the ability, we believe, to head off the disorder. We 

would like to be able to turn the graphic which shows the effect of 

a decline in the number of cases, which represents real dollar savings, into reality. 

So, my belief is, in terms of the timing of when these cases will 

begin to increase, that the money spent now makes much more 

sense. 

My only other comment is that the research that is done directed 

towards Alzheimer’s disease has a whole variety of spin-outs into 

disorders of stroke, cerebrovascular disease. It will probably have 

effects on diabetes and a variety of other illnesses. So, although 
44

this is focused on Alzheimer’s, the people who have come to it and 

the advances in different areas and for different diseases have been 

surprising; sometimes unpredictable. 

Senator SPECTER. Well, that is a good answer, Dr. DeKosky. And 

we will do our very best to get the maximum funding we can. 

On a parochial matter, may I ask all those from Pennsylvania 

who are here today, I understand we have a very large contingency, to stand up? 

[Pennsylvania group stands.] 

CONCLUSION OF HEARING

Senator SPECTER. Thank you all very much for being here, that 

concludes our hearing. 

[Whereupon, at 10:45 a.m., Tuesday, April 3, the hearing was 

concluded, and the subcommittee was recessed, to reconvene subject to the call of the Chair.]

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