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46–898 PDF 2008

S. HRG. 110–728 

THE FUTURE OF ALZHEIMER’S BREAKTHROUGHS 

AND CHALLENGES 

HEARING 

BEFORE THE

SPECIAL COMMITTEE ON AGING 

UNITED STATES SENATE 

ONE HUNDRED TENTH CONGRESS 

SECOND SESSION 

WASHINGTON, DC 

May 14, 2008 

Serial No. 110–28 

Printed for the use of the Special Committee on Aging 

( 

Available via the World Wide Web: http://www.gpoaccess.gov/congress/index.html 

SPECIAL COMMITTEE ON AGING 

HERB KOHL, Wisconsin, Chairman 

RON WYDEN, Oregon 

BLANCHE L. LINCOLN, Arkansas 

EVAN BAYH, Indiana 

THOMAS R. CARPER, Delaware 

BILL NELSON, Florida 

HILLARY RODHAM CLINTON, New York 

KEN SALAZAR, Colorado 

ROBERT P. CASEY, Jr., Pennsylvania 

CLAIRE McCASKILL, Missouri 

SHELDON WHITEHOUSE, Rhode Island 

GORDON H. SMITH, Oregon 

RICHARD SHELBY, Alabama 

SUSAN COLLINS, Maine 

MEL MARTINEZ, Florida 

LARRY E. CRAIG, Idaho 

ELIZABETH DOLE, North Carolina 

NORM COLEMAN, Minnesota 

DAVID VITTER, Louisiana 

BOB CORKER, Tennessee 

ARLEN SPECTER, Pennsylvania 

DEBRA WHITMAN, Majority Staff Director 

CATHERINE FINLEY, Ranking Member Staff Director 

(II) 

C O N T E N T S 

Page 

Opening Statement of Senator Herb Kohl ............................................................. 1 

Opening Statement of Senator Gordon Smith ....................................................... 2 

Statement of Senator Ron Wyden .......................................................................... 4 

Statement of Senator Susan Collins ...................................................................... 4 

Statement of Senator Ken Salazar ......................................................................... 6 

Statement of Senator Elizabeth Dole ..................................................................... 7 

Statement of Senator Thomas Carper ................................................................... 7 

Statement of Senator Bob Corker .......................................................................... 8 

Statement of Senator Sheldon Whitehouse ........................................................... 9 

Statement of Senator Norm Coleman .................................................................... 9 

Statement of Senator Blanche Lincoln .................................................................. 9 

PANEL I 

Statement of Honorable Sandra Day O’Connor, former Supreme Court Justice, Member of the Alzheimer’s Study Group, Washington, DC ..................... 11 

Statement of Honorable Newt Gingrich, former Speaker of the House of 

Representatives, ................................................................................................... 17 

PANEL II 

Statement of Charles Jackson, Alzheimer’s patient, Albany, OR ........................ 43 

Statement of Suzanne Carbone, Alzheimer’s patient caregiver, Silver Spring, 

MD ......................................................................................................................... 49 

Statement of Rudy Tanzi, Ph.D., director of Generics and Aging Research 

Unit, Massachusetts General Institute for Neurodegenerative Diseases, professor of Neurology, Harvard University, Hull, MA .......................................... 54 

APPENDIX 

Prepared Statement of Senator Robert P. Casey .................................................. 65 

Justice Day O’Connor’s Responses to Senator Hillary Clinton’s Questions ....... 65 

Dr. Tanzi Responses to Senator Hillary Clinton’s Questions .............................. 66 

Additional information from Dr. Tanzi, a piece he wrote for the Cure Alzheimer’s Fund Quarterly Report ......................................................................... 69 

Statement submitted by Richard E. Powers, MD, Medical Advisory Board 

Chair Alzheimer’s Foundation of America ......................................................... 74 

Statement of Richard Grimes, CEO & president of the Assisted Living Federation of America ................................................................................................ 81 

Statement submitted by David W. Wright, M.D., F.A.C.E.P., assistant professor of Emergency Medicine and co-director of Research at Emory University ......................................................................................................................... 84 

(III) 

(1) 

THE FUTURE OF ALZHEIMER’S: 

BREAKTHROUGHS AND CHALLENGES 

Wednesday, May 14, 2008 

U.S. SENATE

SPECIAL COMMITTEE ON AGING

Washington, D.C. 

The committee met, pursuant to notice, at 10:44 a.m. in room 

SD–106, Dirksen Senate Office Building, Hon. Herb Kohl (chairman of the committee) presiding. 

Present: Senators Kohl, Wyden, Lincoln, Carper, Salazar, 

Whitehouse, Smith, Collins, Dole, Coleman, and Corker. 

OPENING STATEMENT OF SENATOR HERB KOHL, CHAIRMAN 

The CHAIRMAN. Good morning to you all, and we thank you for 

being with us here today. 

We would particularly like to express appreciation to our esteemed panel of witnesses for their willingness to participate in 

this hearing. Today, we will be discussing Alzheimer’s, a disease 

that currently affects over 5 million Americans and their families 

and is anticipated to affect millions more as our population ages. 

Without a cure or at least some treatment to delay the progression of Alzheimer’s, there will be almost a half million new cases 

each year by 2010. So, clearly, Alzheimer’s disease is a growing national crisis, and we must commit to addressing it in the most comprehensive way possible. There are enormous costs, both personal 

and financial. That is why we need to prepare for this mounting 

epidemic and to determine in what capacity we are able to curb it. 

Right off the bat, we know that there are three things Congress 

can do and has done this year. The first is to increase funding for 

research to find cures or treatments that will slow the onset of this 

disease. The second is to provide support to individuals and their 

families that are living with the disease. Finally, we can protect 

those with genetic predisposition to this and other diseases from 

discrimination by their workplace or insurer. 

Legislation exists or will shortly be introduced to address all 

three of these action issues. For instance, the Alzheimer’s Breakthrough Act aims to increase research funding. The bill, introduced 

by my colleagues Senator Mikulski, Senator Bond, Senator Clinton, 

and Senator Collins, would double funding for Alzheimer’s research 

at the National Institutes for Health to $1.3 billion. This bill 

passed through the HELP Committee in July of last year and is 

currently awaiting a vote. 

Recently, I announced a plan to introduce legislation that would 

offer training and support services to family caregivers. Almost 10 

2 

million Americans are caring for a person with Alzheimer’s disease 

or other dementias. These caregivers frequently do the same work 

as a professional caregiver, but they do so voluntarily and with little or no training or access to broader support services. 

Finally, I am happy to say that the Genetic Information Nondiscrimination Act recently passed both the House with only one no 

vote and the Senate with unanimous support. The bill is currently 

awaiting the President’s signature. Due to recent gains in the areas 

of gene mapping and genetic testing, this legislation is of particular 

importance to the Alzheimer’s community. 

As we will hear today, genetic information plays an invaluable 

role in the early detection and treatment of Alzheimer’s disease. 

The legislation we are talking about will protect the right of Americans to seek out genetic testing without fear that the results will 

be used against them either by an employer or an insurance provider. Our hope is that this protection will encourage broader utilization of testing methods and a greater chance of early intervention where possible. 

Again, we would like to thank our witnesses for their participation in this hearing. To my knowledge, a congressional hearing has 

never cured a disease. But surely, with such a distinguished panel 

of witnesses, we can garner valuable ideas to raise awareness, anticipate challenges, encourage research, and support Alzheimer’s 

patients as well as their families in the very best way that we can. 

We now turn to the Ranking Member of this Committee, Senator 

Gordon Smith, for his comments. 

OPENING STATEMENT OF SENATOR GORDON H. SMITH, 

RANKING MEMBER 

Senator SMITH. Thank you, Mr. Chairman. 

Ladies and gentlemen, good morning. This vast audience that 

has come here, I think, is a testament to just the kind of impact 

that Alzheimer’s is having on America’s families, and we thank you 

for your presence. 

I particularly want to thank Justice O’Connor and Speaker Gingrich. It goes without saying that these are two historic Americans 

who are lending their great prestige to this issue that is so vital 

to healthcare in America and to our ongoing efforts to find a cure. 

I want to particularly thank Charles ‘‘Chuck’’ Jackson, who is 

here in the front row. He will be testifying in the second panel. He 

has flown across the country from Albany, OR, to share his personal story of living with Alzheimer’s disease. Whether it was 

through watching his family members suffer or in his personal battle, Alzheimer’s disease has had a presence throughout most of his 

adult life. 

In fact, Chuck, was diagnosed at age 50 with early onset Alzheimer’s. He has lost 17 members of his family to the disease. I understand that Chuck’s aunt, his Aunt Esther testified at one of the 

first hearings before Congress about the need to increase research 

funding. Chuck, we are pleased to have you here today, but it is 

unfortunate that we are continuing to have to hold hearings on this 

as the disease continues to proliferate, yet funding remains insufficient. 

3 

The instances of Alzheimer’s disease in the United States are 

staggering. Every 71 seconds, someone in America develops Alzheimer’s disease. An estimated 5.2 million Americans of all ages 

and 1 in 8 persons age 65 and older have the disease. Additionally, 

10 million baby boomers can expect to develop Alzheimer’s disease 

in the remaining parts of their lives. 

In my State of Oregon, a total of 76,000 Oregonians have Alzheimer’s disease or a related disorder. This represents a nearly 33 

percent increase in the number of people age 65 and older with 

Alzheimer’s disease over the last 8 years. Sadly, to date, there is 

no treatment to delay or stop the deterioration of brain cells in Alzheimer’s disease. 

To stem this tide, we must increase medical research funding for 

the NIH. Just 2 months ago, I sponsored an amendment to the 

budget to increase NIH funding by over $2 billion. Although this 

is a good start, we need to make sure that the funding actually 

gets appropriated. Across the Nation, many advances in research 

are being realized at NIH-funded facilities. 

For example, in Oregon, the Layton Center for Aging and Alzheimer’s Disease focuses on research aimed at detecting and preventing cognitive decline even before developing symptoms. The 

center integrates its activities with the Oregon Alzheimer’s Disease 

Core Research Center, 1 of 30 national centers funded by the NIH. 

In addition to supporting ongoing research, I am hopeful that 

Congress or the new administration, will lift the ban on Federal 

funding for embryonic research. This will allow our greatest minds 

in medicine to fully explore, in an ethical manner, the potential of 

these cells in creating Alzheimer’s disease, as well as some of life’s 

other devastating diseases, such as Parkinson’s. 

I also will continue to lead the effort here in the Senate to increase funding to the National Family Caregiver Support Program. 

This program is a component of the Older Americans Act, which 

funds an array of local programs to ensure that our seniors can remain in their homes as they age. 

The caregiver program and the Older Americans Act is vital to 

ensuring that families can receive information and assistance about 

available services, individual counseling, respite care, and access to 

adult daycare or home care services. Funding for this program also 

works to organize support groups and establish caregiver training 

programs. 

Unfortunately, all Older Americans Act programs are woefully 

underfunded, and the need for caregiver support far outweighs the 

support that local agencies are able to provide. I will continue to 

work with my partner on the Finance Committee in this effort, 

Senator Lincoln, to ensure that funding for these programs better 

reflects the needs of our country, and I ask that all of you help us 

in this effort with the Older Americans Act. 

Fortunately, with the good work of the panel before us, as well 

as many others, families around the country are receiving help coping with the disease as well as finding treatment. I look forward 

to hearing from each of you about how Congress can better help 

support those individuals who are affected by Alzheimer’s disease. 

So, with that, Mr. Chairman, I turn it back to you. 

The CHAIRMAN. Thank you, Senator Smith. 

4 

Senator WYDEN. 

STATEMENT OF SENATOR RON WYDEN 

Senator WYDEN. Mr. Chairman, thank you. 

We have two very thoughtful guests, and I am going to be very 

brief this morning. 

My mother got a master’s degree from Yale back in the day when 

that was pretty much unheard of. Now she is on the second floor 

of Channing House in Palo Alto, a really wonderful facility, with 

a very advanced case of Alzheimer’s and dementia. Justice O’Connor just mentioned to me a situation much like the O’Connor family is facing. 

If my mother could speak today, she would probably say something like, ‘‘Well, Ronald, what are you going to do to help the others?’’ Today, I hope, will be the beginning of a national drive, literally a nationwide mobilization to forge a new strategy against 

Alzheimer’s. The new strategy should be primarily about prevention. If there is one word that ought to capture our future strategy, 

that is it. 

Because when you listen to Chuck Jackson—and we are so 

thrilled that you are here, Chuck—it is an inspiring story he tells 

about his effort to really ring the bell and generate national awareness about how important prevention is for those who are under 

65. 

So I am very much looking forward to our guests. I have had a 

chance to work with Speaker Gingrich often on healthcare issues. 

There is certainly nothing partisan about this one. Today, if we can 

do nothing else but drive home the importance of a new strategy 

that zeroes in on prevention, I think that is something that the 

whole country will rally to. 

I thank you, Chairman Kohl and Senator Smith, for your leadership and bipartisan focus once again. 

The CHAIRMAN. Thank you, Senator Wyden. 

Senator Collins. 

STATEMENT OF SENATOR SUSAN COLLINS 

Senator COLLINS. Thank you. Thank you, Mr. Chairman. 

I co-chair with Senator Hillary Clinton the Congressional Task 

Force on Alzheimer’s Disease. So I am particularly pleased that 

you have called this hearing this morning so that we can get an 

update on where we stand in the battle against Alzheimer’s. 

I am, of course, delighted that we have Justice O’Connor and 

Speaker Gingrich with us. Both of them are members of the Alzheimer’s Study Group, which is bringing together the most creative 

people that I can imagine to help us chart a new course in dealing 

with Alzheimer’s. 

As someone whose family has experienced the pain of Alzheimer’s over and over again, I know there is no more helpless feeling than to watch the progression of this terrible disease. It is an 

agonizing experience to look into the eyes of a loved one only to receive a confused look in return. Of course, my family is by no 

means alone. An estimated 5.2 million Americans have Alzheimer’s 

disease, including more than 25,000 people in Maine. That is more 

than double the number in 1980. 

5 

Moreover, Alzheimer’s costs the United States about $150 billion 

a year. This figure is going to increase exponentially as the baby 

boom generation ages. Our investments in Alzheimer’s research 

have begun to pay dividends. Effective treatments are tantalizingly 

within our grasp. Moreover, if scientists can find a way to delay the 

onset of this devastating disease for even 5 years, our Nation would 

save more than $60 billion every year in Medicare and Medicaid 

costs and an incalculable amount in human suffering. 

So that is why it is so important that we make these investments, that we pursue every opportunity possible. This hearing 

helps set us in that direction. 

So, thank you, Mr. Chairman. I am going to submit the rest of 

my statement for the record, and I appreciate your holding this 

hearing. 

[The prepared statement of Senator Collins follows:] 

PREPARED STATEMENT OF SENATOR SUSAN COLLINS

Mr. Chairman, as the Senate Co-Chair of the Congressional Task Force on Alzheimer’s Disease, I am pleased that you have called this hearing to provide the 

Committee with an update on where we stand in the battle against Alzheimer’s, and 

I want to thank Justice O’Connor and Speaker Gingrich for their advocacy. Both are 

members of the Alzheimer’s Study Group. 

As someone whose family has experienced the pain of Alzheimer’s many times, 

I know that there is no more helpless feeling than to watch the progression of this 

dreadful disease. It is an agonizing experience to look into the eyes of a loved one 

only to receive a confused look in return. 

My family is not along. An estimated 5.2 million Americans have Alzheimer’s disease—including more than 25,000 people in Maine—more than double the number 

in 1980. Moreover, Alzheimer’s costs the United States just under $150 billion a 

year, primarily in nursing home and other long term care costs. This figure will increase exponentially as the baby boom generation ages. As baby boomers move into 

the years of highest risk for Alzheimer’s disease, a strong and sustained research 

effort is our best tool to slow the progression and prevent the onset of this heartbreaking disease. 

Our investments in Alzheimer’s research have begun to pay dividends. Effective 

treatments are tantalizing within our grasp. Moreover, if scientists can find a way 

to delay the onset of this devastating disease for even five years, our nation will 

save more than $60 billion every year in Medicare and Medicaid costs, and an incalculable amount in human suffering. 

If we are to keep up the momentum we have established, however, we must increase our investment in Alzheimer’s disease research. We have made tremendous 

progress, but this is no time to take our foot off the accelerator. That is why I am 

pleased to be an original cosponsor of the bipartisan ‘‘Alzheimer’s Breakthrough Act’’ 

to double the authorization levels for Alzheimer’s research at the National Institutes 

of Health. 

In addition to increasing funding for research, we must also do more to support 

Alzheimer’s patients and their families. I am therefore also pleased to be an original 

cosponsor of the ‘‘Alzheimer’s Family Assistance Act’’ which will provide a tax credit 

of up to $3,000 to help families meet the costs of caring for a loved one with a longterm, chronic disease like Alzheimer’s. The legislation will also encourage more 

Americans to plan for their future long-term care needs by providing a tax deduction 

to help them purchase long-term care insurance. 

Alzheimer’s disease is tragic at any age. But the tragedy is particularly poignant 

when it strikes early, disabling otherwise healthy individuals in the prime of their 

lives. Moreover, when Alzheimer’s strikes before 65, it can create additional problems simply because it is so unexpected and because most of the potentially helpful 

programs and services are targeted to older people. I am therefore particularly 

pleased that this morning’s hearing will also focus on the unique challenges faced 

by the growing population of ‘‘early onset’’ Alzheimer’s patients who are diagnosed 

before the age 65. 

Again, I want to thank the Chairman and the Ranking Member for organizing 

this important hearing which I hope will help us to identify new strategies that will 

move us forward in our battle against this terrible disease. 

6 

The CHAIRMAN. Thank you, Senator Collins. 

Senator Salazar. 

STATEMENT OF SENATOR KEN SALAZAR 

Senator SALAZAR. Thank you very much, Chairman Kohl and 

Ranking Member Smith. 

Let me just say to both Sandra Day O’Connor, a great justice, 

thank you so much for your service to our country for so many 

years and thank you for being here, and speaking out on such an 

important issue. 

To Speaker Gingrich, thank you for your life beyond the speakership and for continuing to contribute to our country and dealing 

with major issues that face our time. 

When I look at this audience that is here today putting a spotlight on the issue of Alzheimer’s, I would imagine that almost everyone out there, including many members of this panel who are 

my colleagues in the Senate, have personal stories about Alzheimer’s. Maybe it is those personal stories that make us all advocates for trying to deal with this issue. 

Just like Senator Wyden’s story with his mother, I, too, had a father, a World War II veteran who was strong as nails. There was 

nothing that could ever put him down. During the last few years 

of his life when he had Alzheimer’s, keep his body was still strong 

and with the right kind of assistance he could still be out there 

feeding cows in his 80’s, his mind was not there. 

It is a very difficult and painful thing, I know, for all families 

to understand what happens with Alzheimer’s, and it is important 

that we are doing what we are doing here today. Hopefully, it is 

just a mark in a journey that is going to be a long journey to get 

us to the point where we can actually prevent the disease. 

Like Senator Wyden, I often wonder what my father would tell 

me today. He no longer is with us here today. But I think he would 

say, one, we need to get a much better understanding of the disease than we currently have. 

I think when he first was coming down with Alzheimer’s, we 

didn’t know what was going on with him. There was a time period 

where he would act in ways that were just so strange, and no one 

had any understanding of why it is that sometimes he would want 

to choke someone within his own family on issues that had nothing 

at all to do with what the dialog was all about. 

Then, second of all, moving forward in his life, watching his body 

still very strong, but his mind was no longer there was a very painful thing for all of us to go through. So I think enhancing the understanding of the disease among all Americans is something that 

is very important, and I also think that moving forward with the 

kinds of investments in research that we all support are very important for us to get a credible and effective prevention program. 

Thank you very much, Senator Kohl and Senator Smith. 

The CHAIRMAN. Thank you, Senator Salazar. 

Senator Dole. 

7 

STATEMENT OF SENATOR ELIZABETH DOLE 

Senator DOLE. Thank you, Mr. Chairman, and I certainly want 

to thank Ranking Member Smith for holding this hearing today. 

What a privilege it is to have Justice O’Connor and Speaker Gingrich with us today and other members of the panel that will follow. 

As I look out across this hearing room and see the number of 

people here, I don’t believe I have ever witnessed as many people 

at a hearing in the 5, 6 years that I have been in the U.S. Senate, 

which certainly speaks—yes. [Applause.] 

I will be very brief because we want to hear from our witnesses. 

But as we are all aware, more than 5 million Americans are currently suffering from Alzheimer’s disease, including more than 

130,000 in my home State of North Carolina. There are about 

300,000 caregivers in North Carolina, and if these caregivers were 

paid minimum wage for their time, it is estimated that the hours 

of care would be valued around $2.9 billion per year in North Carolina alone. It is incredible. 

I am so pleased to have the opportunity to learn more today, to 

be a part of trying to find answers to these very serious problems. 

No question the need for more research is necessary to help prevent, diagnose, and treat Alzheimer’s. It is tremendous the need 

here. 

So just know that I am going to be a strong supporter. I am very 

pleased to be a part of the group that has a chance to learn this 

morning from our witnesses. 

Thank you very much. 

The CHAIRMAN. Thank you, Senator Dole. 

Senator Carper. 

STATEMENT OF SENATOR THOMAS CARPER 

Senator CARPER. Thanks, Mr. Chairman. 

To our first witnesses, Justice O’Connor, my former colleague 

Speaker Gingrich, welcome. We are delighted that you are here 

today, and thank you. 

Thank you all for coming. Whether you are from Delaware or the 

other 49 States, we are glad you are all here. 

My colleague Ken Salazar talked about his dad. My mom, who 

passed away about 3 years ago almost to the month from Alzheimer’s disease, was—that was a picture I will telegraph, that her 

mom had had Alzheimer’s disease. Her grandmother had had Alzheimer’s disease as well. So we knew this was coming. 

Even at the end, though, when I would visit her, among the 

things that we would do together, we would go to the chapel. There 

is a wonderful place that she stayed in Kentucky close to my sister 

and close to her younger sister, and we would read the Bible. It 

was really interesting. My mother was a deeply religious woman, 

and I would start off a Bible verse, and then she would finish it. 

She was really good at this. 

I would sing, like start off singing a hymn, and she would finish 

it. Even near the end of her life, she was able to still do those 

things and provide the kind of connection that I hungered for and 

maybe she did as well. 

Got a lot of people in Washington today. I think most of them 

are in this room, as Senator Dole said. But already today, I have 

8 

met with families from Delaware. I have met with students, groups 

of students from our State. I have met with a bunch of educators 

that are here from our State, doctors that are in town, and several 

lobbyists drifted by, and then all of you, all of you. 

I just want to say that the most effective lobbyists that I have 

met here as a Senator, and as a Governor before that and Congressman before that, the most effective lobbyists I have ever met 

are the people from my State, from my own constituents, people 

that I know, people who know me. 

I would just say to all of you, there is huge competition for these 

Federal research dollars. We doubled the NIH funding, I think, between 1998 and 2002. President Clinton said we are going to do it. 

President Bush in the first year or so of his administration helped 

to complete that pledge. It has been flat ever since. So much competition for Federal dollars. 

I would just say you know the old saying, ‘‘The squeaky wheels 

get the grease?’’ Well, sometimes they do. A lot of times they do. 

I would just say that those of you that are here leaning on us, the 

rest of us to—when there is some extra money around, and we are 

facing a $400 billion budget deficit this year. But when there is 

some extra money around and we can wind down, for example, the 

cost of the wars that we are fighting these days and as we come 

out of the recession, that we make sure that some of those dollars 

are going to be allocated for the research that we need. 

The last thing I will say, and someone else mentioned this, it is 

worth restating. For every hundred dollars or so that we spend in 

helping to keep our parents, our grandparents, our aunts and uncles in a nursing home and to take care of them the last months, 

years of their life, we spend one dollar, one dollar on research in 

trying to figure out how do we prevent this disease and how do we 

cure that. The sooner we can wake up to spend $2, $3, $4, $5 for 

the prevention and cure, we can spend a lot less of those $100 bills. 

We need your help. Not just Federal dollars. Pharmaceutical 

companies spending money on this. The money that you and I raise 

on these Alzheimer’s walks, the memory walks, all of it together 

will help us to get where we need to be. 

Thank you very much. 

The CHAIRMAN. Thank you, Senator Carper. 

Senator Corker. 

STATEMENT OF SENATOR BOB CORKER 

Senator CORKER. Mr. Chairman, thank you for holding this hearing. 

Out of respect for our distinguished witnesses, I will be very 

brief, but I do want to thank all those who are here. 

Like everybody in this room, we have all been touched. On weekends in Tennessee, I visit my dad, who is strapped into a wheelchair to keep from hurting himself, and I just appreciate all of you 

bringing attention to this issue. 

Thank you. 

The CHAIRMAN. Thank you very much, Senator Corker. 

We now turn to Senator Whitehouse. 

9 

STATEMENT OF SENATOR WHITEHOUSE 

Senator WHITEHOUSE. Thank you, Chairman Kohl and Ranking 

Member Smith, for holding this hearing. 

As we get closer and closer to the witnesses, the pressure on the 

panel to be brief grows and grows. So I will simply express my very 

great appreciation to Justice O’Connor for coming forward to bring 

the enormous reservoir of respect and affection that America holds 

for her to bear on this issue. 

Speaker Gingrich, you have really distinguished yourself in your 

post Speaker years as somebody who has kept very, very much involved with these issues. Your co-chairmanship of the Alzheimer’s 

Study Group with our former colleague Bob Kerrey, who I would 

like to recognize also, has really been a very important contribution, and it is inspiring to see this wonderful crowd. 

So, thank you. 

The CHAIRMAN. Thank you, Senator Whitehouse. 

Senator Coleman. 

STATEMENT OF SENATOR NORM COLEMAN 

Senator COLEMAN. Thank you, Mr. Chairman. 

I, too, shall be brief. Like my colleague Senator Corker, I have 

been touched personally. 

I am just going to quote Machiavelli. A lot of philosophy is 

flawed, but he said this. ‘‘From knowing afar off the evils that are 

brewing are easily cured. But when for want of such knowledge 

they are allowed to grow until everyone can recognize them, then 

there is no longer any remedy to be found.’’ 

Let us take his advice and let this be the beginning of a national 

strategy to confront and cure this disease. [Applause.] 

The CHAIRMAN. Thank you, Senator Coleman. 

The Senator from Arkansas. 

STATEMENT OF SENATOR BLANCHE LINCOLN 

Senator LINCOLN. Thank you, Mr. Chairman. 

It has all been said, but not everyone has said it. I, too, will try 

to be brief. 

I want to say a special thanks to our Chairman, who always puts 

together incredibly thoughtful hearings. In the Aging Committee, it 

is an issue that is critically important to me and to my constituents 

in Arkansas, and I just want to thank him as well as our Ranking 

Member, Senator Smith, who I have worked with on the Older 

Americans Act and many of the things that we have been able to 

accomplish together. 

But these two gentlemen do a tremendous job on this Aging 

Committee, where we bring forth so many different issues that are 

affecting the aging community in this country. Of course, all of us 

at some point will be aging. Without a doubt, those of us who grew 

up in communities and families where taking care of our aging 

family members was an honor and a privilege, it was something 

that taught us more about love and family than perhaps anything 

else that we may have learned in our lifetime. 

I, too, like others, my dad was diagnosed with Alzheimer’s at an 

early age. My siblings, my mother, we cared for him with a long 

journey of almost 10 years of suffering from Alzheimer’s. Early on, 

10 

when it was something that was undiagnosable, we had him in the 

trials, different types of trials. But it was amazing not only to see 

him, but to see the caregivers, the people surrounding him all of 

his life. 

He and my mother were high school sweethearts, and she never 

once gave up hope nor has she given up hope. She is still hosting 

house parties in our small community where visiting medical professionals come and talk to the community about the need for research and the need for the dollars and the new and exciting things 

that are coming out in research. 

It has motivated me in many ways. The Chairman allowed us to 

have a hearing last year on the coordination of care and how important coordinating care for elderly, the elderly members of our 

family is and how incredibly economical it is to our medical dollars. 

But more importantly, how it is critically important to those who 

suffer from dementia and Alzheimer’s. 

So there are so many different things that we are all motivated 

by, but we are so grateful to be able to have this opportunity. 

There is no doubt for us here at the dais, for us to look out and 

see this crowd that is here, to understand the passion, the love, the 

interest that is in this room of how we find the kind of cures, the 

research that we need, how we need to even further our investigation of caregiving and what it does, what the needs are and what 

it does to our families, we are very grateful. 

We are enormously grateful to our distinguished panel here. Justice O’Connor, thank you again for being here and all the many 

things that you have done in your service to this great country. 

Speaker Gingrich, thank you for your tremendous service as well. 

We appreciate both of you. 

So, thank you, Mr. Chairman, for once again bringing us together in a remarkable way, as you always do in this Committee. 

Thank you. 

The CHAIRMAN. Thank you, Senator Lincoln. 

So we turn now to our first panel. Our first witness on this first 

panel will be Sandra Day O’Connor, our Nation’s first female Supreme Court Justice. Justice O’Connor served 24 years on the 

Court. In 2007, she was nominated to serve on the Alzheimer’s 

Study Group, a task force of national leaders charged with creating 

a strategic plan to address the growing Alzheimer’s crisis. 

She is currently the chancellor of the College of William and 

Mary. She also serves on the Board of Trustees of the National 

Constitution Center in Philadelphia. 

Following her testimony, we will hear from Newt Gingrich. During his 20 years in Congress, Speaker Gingrich demonstrated his 

commitment to improving the American healthcare system, cochairing the Republican Task Force on Health for 4 years prior to 

becoming Speaker of the House of Representatives. 

Since retiring from Congress in 1999, Mr. Gingrich has continued 

to focus on healthcare issues. He co-chairs the National Commission for Quality Long-Term Care, and he is also a member of the 

Alzheimer’s Study Group. 

Justice O’Connor. 

11 

STATEMENT OF HONORABLE SANDRA DAY O’CONNOR, 

FORMER SUPREME COURT JUSTICE, MEMBER OF THE ALZHEIMER’S STUDY GROUP, WASHINGTON, DC 

Justice O’CONNOR. Mr. Chairman, thank you for—and all the 

members of the Committee, thank you so much for having the 

hearing and for inviting us to share a few minutes with you this 

morning. 

I think the members of this Committee are probably more knowledgeable than any of us about this disease. You have exhibited 

from your statements already a depth of knowledge and understanding about the problem that tells me you are not going to learn 

anything new from us today. 

But Speaker Gingrich and I are both serving on this study group, 

which we hope within the span of a year to be able to come back 

with some recommendations. I am sure that as members of the 

Committee interested in it, you will have heard many of the recommendations already, but perhaps we can shed some further light 

on it. 

But I am here in the position of being a caregiver. My beloved 

husband, John, suffers from Alzheimer’s. He has had it for a long 

time now. He is not in very good shape at present. 

So, I have some appreciation for the depth of feeling that you 

have that has generated the interest and the people who are in this 

room today. Do magnify that by people in every State of this country, and you will understand the depth of concern that is out there. 

This is a really difficult disease because it has no cure as yet. 

You have done work by funding research in this area and by considering some laws, I congratulate you on the one you just passed 

to enable people to get an early diagnosis and not thereby forfeit 

the right to get long-term care insurance. That is really important. 

I congratulate you on addressing that problem and doing something about it. That should help. 

My own sons have not wanted to go be tested, even though, obviously, with their father in the condition he is, they should know. 

But out of the fear that they would then be ineligible for insurance 

they have not done so. So you have done a wonderful thing in getting that legislation passed. 

Researchers really haven’t clearly determined yet why some of us 

get Alzheimer’s and others do not. We don’t totally understand the 

biological processes that cause these devastating effects, but researchers are closer today than ever before in developing some proposed drug treatments that might dissolve the amyloid plaque in 

the brain. But that is going to require serious clinical testing. If 

you are going to dissolve something in the brain, you want to be 

sure it isn’t the brain itself. 

So that is why the studies are lengthy, to make it something that 

we can trust to use. But if you can just shave off by 5 years the 

onset of Alzheimer’s, broadly speaking, think of the money you 

would save nationally on healthcare. I mean, it is just incredible. 

So everything you are doing is worth the effort. It does take a staggering toll on the families and the caregivers. I can certainly attest 

to that. 

Now I don’t know what the official thinking is on the expansion 

of Alzheimer’s in the future, but the doctors who take care of my 

12 

husband tell me that one in two people over 80 are going to have 

Alzheimer’s. Now I am getting pretty close to 80. So that gets my 

attention. I think a lot of people will be concerned when they look 

at it from that standpoint. 

What we have to ask is whether this rapid growth is inevitable. 

I think it is not if we can fund the research and encourage it and 

enable testing to be done and get clinical trials coordinated and 

broadly based so that maybe they don’t have to go on forever. We 

might even encourage drug companies to do more if they thought 

that they could somehow extend the life of the patent. 

I mean, it could take 15 years to do the testing. If the patent life 

is 17 years, you are not going to have a lot of encouragement there 

for this kind of thing. So I think the Committee has a need for considering coordinated approaches to what we need to do because this 

is a problem that cries out for help, and we do need additional research. 

We need to continue to teach people how to care for Alzheimer’s 

patients. It is better if they can stay home, but they reach a point 

where often they can’t. Daycare is helpful at earlier stages of the 

Alzheimer’s patient, very helpful. So, how can we do that? 

I think that our Nation is certainly ready to get deadly serious 

about this deadly disease, and I think that your approach here in 

the Committee and in Congress encourages me to think that you 

are quite well informed and quite interested in doing something 

about it. 

I think we have to expand the research efforts, and we have to 

encourage the sharing of research data across the country with 

those who can help further this process. I hope that we can encourage the private investment that it is going to take to make drugs, 

treatment drugs in this area widely available to the public. We certainly need to encourage the support systems that we have for the 

families and the patients themselves. 

I just thank you for focusing on this and for sharing with each 

other and with everyone in this room your own personal experiences with it. They are heart-rending, as everybody in this room 

can tell you. 

Thanks. 

[The prepared statement of Justice O’Connor follows:] 

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The CHAIRMAN. Thank you very much, Justice O’Connor. [Applause.] 

Speaker Gingrich. 

STATEMENT OF HONORABLE NEWT GINGRICH, FORMER 

SPEAKER OF THE HOUSE OF REPRESENTATIVES, MEMBER 

OF THE ALZHEIMER’S STUDY GROUP, WASHINGTON, DC 

Mr. GINGRICH. I am going to say, first of all, it is a little intimidating to follow Justice O’Connor, who I think communicated powerfully the emotional and moral case. 

I do want to thank Senator Kohl and Senator Smith for hosting 

this and allowing us to come here. 

I have submitted testimony for the record and ask that it be accepted as such. I would like to summarize. 

I also want to thank Senator Collins, who, along with Senator 

Mikulski, Burr, and Clinton, helped us launch the Alzheimer’s 

Study Group, when Senator Kerrey and I were up here about 8 

months ago. 

I feel very honored—Senator Kerrey and I had co-chaired a Quality of Long-Term Care Commission for about 3 years, and it became obvious that if you are really going to deal with long-term 

care in America, you had to focus intensely on Alzheimer’s. It 

meant a great deal to us to have Justice O’Connor join us in the 

Alzheimer’s Study Group. 

Just briefly let me list Dr. Christine Cassel, the geriatrician and 

president of the American Board of Internal Medicine. Meryl 

Comer, who is president of the Geoffrey Beene Foundation Alzheimer’s Initiative and who herself is a remarkably powerful witness to being a family member coping with Alzheimer’s, and she is 

here today. 

Dr. Steve Hyman, the provost at Harvard. Henry McCance, who 

is chairman of Greylock Partners. Dr. Mark McClellan, who is the 

director of the Engelberg Center for Healthcare Reform at the 

Brookings Institution, was the head of the FDA and the head of the 

Center for Medicare and Medicaid Services. 

James Runde, who is special advisor to Morgan Stanley. Dr. 

David Satcher at Morehouse Medical School, who was the head of 

the Centers for Disease Control and the former Surgeon General of 

the U.S., and Dr. Harold Varmus of Sloan-Kettering, who is the 

former head of NIH, form the Alzheimer’s Study Group. 

So we have tried to assemble a team that really brings a unique 

level of expertise, and I am going to try to broadly represent their 

thinking and add a few points in my summary. 

I also want to thank the Alzheimer’s Association leadership. 

Their 2008 Alzheimer’s Disease Facts and Figures is as useful an 

introduction to this and as authoritative as there is in the country, 

and they do an extraordinary job of pulling together people who 

have a deep concern about Alzheimer’s. 

I want to thank George Vradenburg, who has been particularly 

helpful in coaching Rob Egge, who is the staff director of the Alzheimer’s Study Group, and myself in working on this. 

You have already mentioned the impact of Alzheimer’s again and 

again, and I recommend to all of you, if you have a chance, to see 

Meryl Comer’s video, which is very powerful. My sister-in-law’s 

18 

mother currently has Alzheimer’s. I think a number of you, as well 

as Justice O’Connor, have outlined the personal human challenge 

and the pain for the family. 

Many years ago, I called Nancy Reagan one evening, and she 

said it is such a cruel disease because you are dealing with a person who in every way looks like the person you used to know and 

yet in so many ways they have changed. I think that captured the 

sense of cruelty and difficulty. 

Yet there is enormous hope for a better future, and the Alzheimer’s Study Group has established five areas—it is in the testimony—encouraging collaboration among researchers, improving 

Alzheimer’s clinical trials, rapid learning from large electronic 

health datasets, integrating a community-based care model, and 

providing better information to policymakers. 

I think if we look at the possibilities, I want to start with a broad 

generalization. I would really encourage the entire Congress and 

the executive branch to take this much more seriously than we do. 

We are going to have four to seven times as much new science in 

the next quarter century as we had in the last quarter century. 

Sixty-five percent of it will come from outside the United States. 

No one on the planet understands how you cope with this flood 

of new information. Research on the brain will be one of the most 

extraordinary areas of explosive new knowledge because it is the 

most complex area of science, and we have only had really decent 

technologies for the last 15 years. Almost all of them, by the way, 

came out of the National Science Foundation investment, not the 

National Institutes of Health. 

It is physics and math, which is the underlying base of the tools, 

which allow researchers into the brain to acquire real-time data 

about living brains. So, it is very important to understand that a 

truly basic research strategy has to involve the National Science 

Foundation as well as the National Institutes of Health. 

If you take seriously what I just said, and I would be glad to answer the question of how we got to the four to seven number, it 

is inconceivable that we know today as policymakers what is possible. If we get four times as much new science, then trying to 

think out to 2033, which is not very far away if you are thinking 

about something like Alzheimer’s—I mean, you look around this 

room and look at the number of people who are likely to be alive 

in 2033 and look at the number who are likely to be entering precisely the age that Justice O’Connor talked about. All of a sudden, 

this gets to be very personal for most of the people in this room. 

But if you are looking out to 2033 and we get four times as much 

new science, you are the equivalent of a Senate committee in 1880 

trying to understand today. 1880 is pre-automobile, pre-airplane, 

pre-radio, pre-motion picture, pre-long distance telephone, pre-electric light. I mean, how would you explain to a Senate committee 

of 1880 how you got to work this week or how you go back home 

to your State or how you stay in touch or the BlackBerry in your 

pocket or the cell phone with a camera? 

Yet no one tries to say if we could have breakthroughs on that 

scale, what is our investment strategy? If I had one really powerful 

thing I would like to get you to focus on it is to take head on the 

19 

Office of Management and Budget, Congressional Budget Office design. 

I was startled. About 4 years ago, I was trying to understand 

what we were doing wrong in the global war on terror and on Iraq. 

I met with Fred Smith of FedEx to talk about our lack of metrics 

and our lack of ability to manage large systems. 

At one point in our breakfast, he said Government cannot distinguish between investment and cost. Therefore, Government could 

never tolerate in building FedEx or UPS because you could never 

explain why the wireless and the laptop are so central. 

Now I will say to you as an aside, as an illustration, if I might? 

The recent decisions by the Census Bureau are so out of touch with 

modern reality they verge on insanity, and yet nobody is standing 

up and saying, ‘‘Let me get this straight. In the age of eBay, 

YouTube, Facebook, MySpace, Google, we are going to hire 600,000 

temporary workers to do a paper and pencil census in 2010? ’’ 

Which would be grounds, I would argue, for replacing the entire department and just saying anybody dumb enough to believe in this 

is so out of touch. 

But let me suggest to you, when you look at Alzheimer’s, we have current projections of a $1.2 trillion in Federal spending for the 

baby boom generation, matched by a $1.2 trillion in personal 

spending. Now if you instructed the Congressional Budget Office to 

design a generational investment strategy because you know what 

is going to happen, we are going to run out of money. We are going 

to nickel and dime truly stupid things to try to save money in 

Medicare and Medicaid. When if you started right now and had an 

investment strategy, you might postpone Alzheimer’s by 5 years. If 

you postpone Alzheimer’s by 5 years, you save half that money, 

$600 billion. 

Now if you go to say what is the time value of money, and could 

we set up a brand new—an amendment to the Budget Act for an 

investment strategy that is fundamentally off budget, but manageable and defined and that counts against future savings? This applies to many diseases, but in particular, since we are here today 

talking about Alzheimer’s, it applies massively to Alzheimer’s. 

Now let me carry it a stage further. We have to look at, first of 

all, how do you accelerate basic research in the world I am describing? I think that means—and I say this having helped double the 

NIH budget while we were balancing the budget. So when people 

tell me we don’t have enough money, we have about $3 trillion. It 

is a question of priorities. I would argue passionately NIH should 

grow at 7 percent a year in constant dollars. That is about the 

amount you need annually in order to sustain the momentum of research. 

Second, I would triple the NSF as rapidly as possible. The biggest single mistake I made as Speaker was not tripling the National Science Foundation, which was a much smaller institution, 

while doubling the NIH. As a result, we are not getting the investment in math, physics, and chemistry we need and in basic 

nonhuman biology, all of which are central to our future. 

I would also insist that Government research have a substantial 

information technology investment, and I would insist on fundamental set-asides for young researchers. We are moving into a 

20 

cycle right now where we are over investing in old senior researchers who have great prestige, but no new ideas. This will get me in 

a lot of trouble with NIH. [Laughter.] 

But the truth is—the truth is in an age of radical scientific 

change, you want to consciously allocate a fair amount of money to 

people under 40. You don’t want anyone to have to spend half their 

lifetime working as an apprentice to somebody who is wrong. 

Again, just read Kuhn’s ‘‘The Structure of Scientific Revolutions,’’ 

and you will get some sense of the scale of change that I am describing. 

We also want to focus on translating basic research into applied 

research. I think that means make the R&D tax credit permanent. 

I think this will be fairly controversial. I think you should review 

the ethics rules to make sure we have not created such solid firewalls at NIH that we, in fact, inhibit the flow of knowledge back 

and forth. 

The great engines of translating research into productive use are 

the private sector engines. If we build walls that are too strong, we, 

in fact, inhibit the transfer of knowledge in a way that is very, very 

dangerous in the long run. 

How do we accelerate translating applied research into usable 

medications? I think that requires FDA reform. I think that—and 

particularly in the area of brain science because a lot of the rules 

that make perfect sense if you are looking at a normal physical behavior, cancer or whatever, don’t make sense when you are dealing 

with the brain. I think that you need a fundamental rethinking of 

how the FDA deals with research and breakthrough in the brain. 

How do we get the new breakthroughs used on a daily basis? Remember that, excuse me, the National Institute of Medicine points 

out that it takes up to 17 years to adopt a new best practice. I 

would encourage the National Library of Medicine to help create an 

electronic Internet-based, real-time 24/7 learning system for doctors 

and recognize that the continuing medical education has to be permanent. It has to permeate the system, and it has to be real time. 

I would look at very fundamental investment at the National Library of Medicine to develop that kind of capability because you 

want to get the newest breakthrough to your mother’s doctor this 

week, not in 17 years. 

I think you have to encourage the pharmaceutical investment in 

brain science and in the whole range of brain diseases. I would 

strongly encourage you to amend the Orphan Drug Act to include 

all brain research as an orphan drug activity. That would begin— 

because this is a zone that is very complicated and very hard, and 

as a result, pharmaceutical companies aren’t going to invest in it. 

If you want to maximize the private sector investment, you want 

to maximize the possibility of real return. If all of the work done 

on Alzheimer’s and on Parkinson’s and other brain conditions was 

treated as an orphan drug for patent purposes, you would dramatically explode the amount of money being spent. 

Now I understand the countervailing argument, which is that 

means you have the drug on patent longer. But let me just suggest 

to you having the drug is precedent to being able to get it to be 

generic. If nobody is going to do the research to ever develop the 

drug, you are never going to get to the generic. 

21 

I would rather spend a few extra years on patent and actually 

have the drug to save lives than have it explained to me why we 

blocked them from having it on patent because that taught them, 

but, by the way, the drug doesn’t exist. It is a very fundamental 

policy question about how we accelerate private sector investment 

in this kind of an area. 

I would also suggest to you three final very large changes. The 

first I have already mentioned. If you can move to an investment 

strategy on a generational basis, you can justify a dramatic increase in investment in these areas, and you will, over a decade to 

15 years, get an amazing level of payout that will save the budget 

an extraordinary amount of money. 

Second, you should create a public/private partnership for developing the use of electronic health data. We have over 40 million 

electronic health records today. They can be used on a depersonalized, anonymous basis with all HIPAA protections that are necessary. But do not bury this at NIH. 

This is the kind of thing where you all ought to have a hearing, 

and you ought to bring in the head of eBay and the head of Google 

and the head of YouTube and the head of Facebook and people of 

that caliber and say to them, what would a public/private partnership look like that allowed us to use the best of IT to create an 

electronic epidemiology that allowed us to track millions of data 

points in real time in a way that we have—? 

Remember, the Framingham study is a very small number of 

people, and yet it is the most famous single cardiology study ever 

done. We have literally at the Veterans Administration, at Kaiser 

Permanente, and at a dozen other facilities, we now have enough 

medical records over enough years that if we had a serious investment in electronic epidemiology, we would have an extraordinary 

amount of new knowledge about what works, what doesn’t work, 

what are the various patterns. Nobody has seriously explored this 

yet. 

None of the research systems are using the potential we have, 

but I would consciously not allow that to be purely an NIH function. 

Last, with as much money as Alzheimer’s is going to cost in as 

many different places, I would really urge you to create a White 

House coordinator who has reach across the entire Federal Government. It is an absurdity to have all the different pockets of funding—well, the same thing would apply to diabetes and one or two 

other large disease centers. 

We have these huge, very expensive—these are things that cost 

more than any department in the Federal Government, except 

HHS and Defense. Yet they are totally uncoordinated, and there is 

no capacity to bring people together and force them to talk to each 

other and try to get these things done in a way that makes sense. 

I would really look at a matrix management model for this kind 

of thing and try to have a coordinator who had reach into every aspect of Federal spending on this kind of area. So you could begin 

to think about what are the five problems I most wish I could solve 

this year, and where can I make the investment to solve them? 

That is today not done anywhere in the Federal Government in an 

effective way. 

22 

Anyway, I appreciate you giving us this kind of opportunity. I 

hope that between us, with the power and the prestige that Justice 

O’Connor can bring and with the work that the Alzheimer’s Study 

Group is doing, I hope that we can work with you over the next 

few years and truly make dramatic breakthroughs in enabling 

America to have a dramatically better future in the area of Alzheimer’s. 

[The prepared statement of Mr. Gingrich follows:] 

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The CHAIRMAN. Thank you very much. [Applause.] 

Thank you very much, Speaker Gingrich. 

We will turn to the panel now for questions. Senator Smith? 

Senator SMITH. Justice O’Connor, many of us have watched the 

dignity with which you have dealt with your great husband, and 

obviously, now he is receiving care in an institution. I am wondering if during that process if you found any help, Federal programs, or support system there to lighten your burden or—— 

Justice O’CONNOR. Yes, a little bit. Senator Smith, we have 

switched John over to something called Evercare for the medical 

advice in the care center where he is, and it works quite well. 

I don’t know how many of you have had any exposure to that. 

But I have been pleasantly surprised, frankly, with the coordination of the advice and care that he is given and right in the center. 

He doesn’t have to be hauled out to a specialist hither and yon. 

They have a coordinated medical program that comes to him, and 

it is helpful. 

Senator SMITH. Is Evercare generally available? 

Justice O’CONNOR. Yes, it is, and your staff can provide you information about it. I have been pleasantly surprised. 

Senator SMITH. That is great news. 

Speaker Gingrich, you gave us just a wealth of great ideas, and 

you asked us to prioritize the long list that you gave us. What 

would be one, two, and three that we ought to do? 

Mr. GINGRICH. Let me say, first of all, I think that Evercare is 

a United Health product and is actually—has a remarkable record 

of improving lives, improving satisfaction, and lowering costs and 

is an example of the kind of breakthrough that the Center for 

Medicare and Medicaid Services should be routinely using to modernize the system across the whole system. 

If I were prioritizing, the number-one thing I would do is change 

the way we get—the budgets work. The current budget process is 

insane. I use that word deliberately. I mean, I have had a long— 

as you know, a long experience up here. I am tired of being told 

we have to do things that are really stupid because we have always 

been stupid, and therefore, you literally don’t sound appropriate if 

you are not stupid. 

Senator SMITH. I have to admit, at 2 a.m., when we are voting 

on the budget, it really does seem stupid. But—[Laughter.] 

Mr. GINGRICH. Well, you are forced in with the rules that are set 

up in black boxes that nobody holds accountable, and the Congressional Budget Office and the Office of Management and Budget 

force you into decisions that are irrational. So, if I were tackling 

one thing, I would tackle that first. 

If I were tackling a second thing, it would be developing the ability to use the electronic databases because the amount we are 

going to learn when you start tracking 30, 40, 50 million people 

over 5 and 10 years and you begin to see various and sundry cross 

indicators we have never seen. 

The third thing I would look at, I think, is this idea of a coordinator at the Federal level. The morning there is a coordinator who 

makes an annual report on Alzheimer’s and who can actually list 

all the different Federal activities, you will be startled how much 

32 

you have on the table and how much you have at risk in not dealing effectively with this disease. 

Senator SMITH. Thank you, Mr. Speaker. 

The CHAIRMAN. Thank you, Senator Smith. 

Senator Wyden. 

Senator WYDEN. Thank you, Mr. Chairman. 

Thank you, thank you both for an inspiring morning. Justice 

O’Connor, you speak for so many Americans who are trying to assist a relative, and we are just very grateful for your leadership. 

Speaker Gingrich, let us go to the financing question, something 

you and I have talked about in the past because this, of course, has 

been the biggest challenge with respect to long-term care. The bills 

are crushing for the families. We haven’t had sufficient private 

long-term care insurance. People fall between the cracks in terms 

of public services. 

I want to ask this question this way. In the Healthy Americans 

Act, which is a bipartisan bill, the first bipartisan universal coverage bill we have had in the Senate, Senator Bennett and I make 

a special focus on the tax code, where we have between $200 billion 

and $300 billion go out the door in a way that disproportionately 

favors the most affluent and also rewards inefficiency. So we used 

that money to start making a transition to a more sensible, market-oriented approach in healthcare. 

Are there any similar sources of funds that you could identify 

that we would zero in on and say this is a place where we can get 

more for our money and start moving it into the kinds of things 

that you and Justice O’Connor have spoken so eloquently about, 

particularly prevention and treatment? 

That is what we did in terms of jump-starting the debate about 

universal coverage. How do we jump-start this question of funding 

the new investment strategy that I think you are spot on in calling 

for? 

Mr. GINGRICH. In the Quality of Long-Term Care Commission 

that Senator Kerrey and I had chaired prior to the Alzheimer’s 

Study Group, we looked at a number of long-term financing concerns because we have never seen, ever in history, a population 

that is going to live as long as people are going to start living. 

A girl born in Japan last year on average will live to be 88. That 

means half of them will live to be over 88. I mean, no society in 

history has tried to deal with this. 

As a totally different topic, I would be glad to come up and talk 

about it some day because it has all sorts of implications for Social 

Security, for retirement, for pension plans. I mean, we have to become a society with massively greater savings during our working 

years and probably with longer working years if we are going to 

be able—if we are going to have people who live to be 100, 110, and 

120 who have a comfortable lifestyle. 

My personal bias strongly favors a tax credit for quality longterm care, and I would even contemplate a tax credit that was, in 

effect, a part of what everybody did, almost like FICA, starting 

when you first went to work because I think we have got to find 

a way to quantify, buildup resources over a generation. So the generation starts taking care of itself. 

33 

I don’t think you can have an intergenerational transfer system 

when you have a slowdown in population growth and people living 

30, 40 years longer than they expected to. In 1900, the average age 

was 46. The average person lived to be 46 years old. So 100 years 

later, we have now added some 32 years to that lifespan. Nobody 

has ever tried to cope with this scale of change, and we are going 

to have to. 

I will make a little bit of trouble and just say I have been astounded that the Congress has not taken seriously honesty in 

healthcare. The example I will cite for you is the New York Times 

did a four-part series 2 years ago on Medicaid in New York, where 

their estimate was that Medicaid in New York had 10 percent pure 

fraud. Not waste and abuse, not bad judgment—pure fraud. 

Crooks. People who were deliberately stealing. That is $4.4 billion 

a year in New York State alone. 

HIV–AIDS transfusion in south Florida in three counties is clearly a stunning racket. There was one raid where the State and Federal Government collaborated. They closed down 17 infusion centers, five of which were pizza parlors. There is—my guess is that 

you have something like 10 percent of all Medicaid spending in the 

U.S. is fraud. 

If I were looking for cash that would not cost the taxpayer, I 

would take seriously the New York Times study and just ask the 

question under what circumstance could you get that down to 

being, say, a 1 percent fraud rate. But that is a lot of money. I 

mean, 10 percent of all Medicaid begins to be a transferable 

amount of cash. 

Senator WYDEN. Thank you. 

The CHAIRMAN. Thank you very much, Senator Wyden. 

Senator Collins. 

Senator COLLINS. Thank you, Mr. Chairman. 

Thank you both for your excellent testimony. 

Speaker Gingrich, when you were talking about the scoring that 

is done by CBO, I just could not help but think what a penny wise, 

pound foolish approach that we have. We know that in the long 

term these investments will save billions and billions of dollars. 

Yet when CBO does its scoring, it does its estimates as if nothing 

changes, as if human behavior does not change, as if the investment produces no results. I do think that that is something we 

need to change. 

You brought up an issue today that most of us don’t think about 

when we are thinking about Alzheimer’s, and that is the National 

Science Foundation budget. Our approach, our focus has been on 

NIH. Could you talk a little bit more about why we should triple, 

as you recommended, the NSF’s budget if we are serious about 

breakthroughs in Alzheimer’s? Because I think that is not where 

we have traditionally focused our efforts. 

Mr. GINGRICH. Brain science is particularly dependent on nonbiological knowledge. If you are going to—the ability to scan the 

brain while it is actually functioning is a direct function of physics 

and mathematics. The more breakthroughs you can make in getting very sophisticated models, the better off you are. 

The human brain has about as many neurons as there are stars 

in the universe. That implies a level of complexity that is unimagiVerDate Aug 31 2005 15:36 Feb 18, 2009 Jkt 000000 PO 00000 Frm 00037 Fmt 6633 Sfmt 6633 H:\DOCS\46898.TXT SAG PsN: JOYCE
34 

nable. Thinking through and dealing with that complexity involves 

an extraordinary amount of mathematics, which is an area you 

don’t think of this as being part of the National Institutes of 

Health. Yet if you looked at the technology we use today, and you 

went back and said when was it developed and when did we understand the physics of that, most of that is done at the National 

Science Foundation. 

The other area of breakthrough that I recommend highly is looking at nanoscale science and technology. Which is basically just 

very small, but the essence of it is down at the level of one atom 

or smaller than an atom. We don’t fully understand—in fact, we 

don’t understand much of anything about how it works, but we are 

very good at measuring what works. 

Almost all the nanoscale breakthroughs originally were funded 

by either the Defense Advanced Research Projects Agency or by the 

National Institute for Standards, NIST, or by the National Science 

Foundation. Yet if we can get down to a point where we understand how one molecule works and how that relates to the development of plaque, if we can understand how one synapse is occurring 

and we can measure it in real time, we suddenly can start laying 

out an understanding, which I think affects, by the way, not just 

Alzheimer’s, but it affects Parkinson’s. It affects mental health. 

It affects our learning—my guess is learning strategies 20 years 

from now will be totally different than the way we currently teach 

people, and it will all come out of this zone of brain science, which 

I think will be the most rapidly evolving area in science. I think 

that it will drive—much of its tools and many of its most powerful 

concepts will come out of National Science Foundation funding. 

I am not anti-NIH, but I am saying I think we have really underestimated the importance of math, physics, and chemistry as the 

underpinnings of what we do at NIH. 

Senator Collins. Thank you. 

The CHAIRMAN. Thank you, Senator Collins. 

Senator Whitehouse. 

Senator WHITEHOUSE. I am interested, Speaker Gingrich, in your 

testimony about the results to be gained from coordination and 

electronic assembly, if you will, of the information that we already 

have on hand and the conclusions one can draw from it a la the 

famous Framingham study. Could you speak a little bit further 

about that? If you could, put Americans’ concerns about the privacy 

of that data into context because that is an immediate concern of 

people who discuss this. 

Mr. GINGRICH. Well, if you are going to look at the discovery of 

certain drugs recently which had unexpected side effects. Kaiser 

Permanente has had a significant role in discovering those because 

it has an electronic database, and so it can pick up pretty rapidly 

that there have been eight or nine bad outcomes scattered across 

the whole country. When you correlate them, they all turn out to 

be a person of a certain age using a certain drug. So, Vioxx, for example, was surfaced, in part, by correlating electronic data. 

Now, as long as you depersonalize the data so I don’t know who 

it is, and I am looking at a dataset of in the case of Kaiser 13 million and the case of the Veterans Administration about 21 million, 

in the case of Mayo it would be a couple of million plus, I am lookVerDate Aug 31 2005 15:36 Feb 18, 2009 Jkt 000000 PO 00000 Frm 00038 Fmt 6633 Sfmt 6633 H:\DOCS\46898.TXT SAG PsN: JOYCE
35 

ing at aggregated data that I can’t track down who you are, but 

you have become part of set of information. I suspect most Americans would actually be glad to know that that kind of analysis was 

underway, and it has clearly saved lives in the recent past. 

But nobody has—we don’t invest today. We don’t have a discipline of electronic epidemiology, where people are going out and 

developing large-scale studies and saying if I massage all this data, 

what do I discover about the interaction between diet, medicine, exercise, age, geography? 

The other example which we will be developing this year, by the 

way, is that Gallup, working with Healthways, is now building the 

largest dataset in history on attitude about health. They are actually measuring 1,000 samples a day, 365 days a year. So, by the 

end of this year, they will have about 365,000 samples in which 

they are going out and asking people a whole range of health questions in order to begin to define which communities in America are 

healthiest and why and which communities in America have substantial health problems and why. 

My guess is that 3 years from now, if you would take the electronic health records datasets and the Gallup Healthways dataset 

and match them, you would be startled at how many new public 

policy indicators we would have that literally do not exist today. 

Senator WHITEHOUSE. I thank you. 

Mr. Chairman, we had a wonderful meeting—hearing, I guess 

you would call it—a few years ago in Rhode Island on the general 

subject of electronic health records when Speaker Gingrich came, 

twinned with our wonderful Rhode Island State representative Patrick Kennedy in one of the more unlikely political strange bedfellows pairings that I have ever been privileged to witness. 

But it demonstrates that this question of electronic health 

records and the information and savings that can be gleaned from 

them truly is a bipartisan issue. It is not right versus left. It is 

right versus wrong, or I think, as Speaker Gingrich has indicted, 

smart versus stupid. We have been on the wrong side of that for 

too long, and I appreciate his testimony. 

The CHAIRMAN. Thank you, Senator Whitehouse. 

Senator Dole. 

Senator DOLE. Thank you, Mr. Chairman. 

Speaker Gingrich, you submitted for the record long-term care financing. Would you elaborate on how the Alzheimer’s Study Group 

plans to include suggestions for policymakers to address long-term 

care? Could you just give us a summary of what you think will be 

forthcoming? 

Mr. GINGRICH. Yes, I think actually the Alzheimer’s Study Group 

probably will not get too involved directly with that, except on the 

area of the community-based care model, where we do think we 

have to have innovative approaches to support patients and families. Because it—as you can tell from the list I read earlier, this 

is a very prestigious group of people. 

Senator DOLE. Yes. 

Mr. GINGRICH. I am not going to get in trouble by prejudging 

what they are going to submit. But I can promise this Committee 

that as soon as we have developed these ideas, we will submit 

them directly to the Committee for your knowledge. But as you 

36 

know, I am very seldom timid. In this case, I am unwilling to get 

very far ahead of the group because these are all powerful people, 

and they will get real mad at me. 

Senator DOLE. Well, I think that might apply to my next question, which was in my State there is a respite group called Project 

C.A.R.E. That is Caregiver Alternatives to Running on Empty. 

They receive Federal funding, and I was interested in what the 

study group might be finding to be most valuable to the caregivers 

on a daily basis? 

Mr. GINGRICH. Let me just say as you are trying to develop this, 

and I am speaking now for myself and not for the group. If you 

start with the idea, as Justice O’Connor said—and she may want 

to add to this—to the degree that we can make it easier and more 

affordable for families to care for people as long as possible, it is 

more humane. It is more desirable, and it is less expensive. 

So if you were to erase the current system and say what would 

a system look like that maximized your ability? I think two of the 

things you would do is you would shift the financing to find ways 

to subsidize families who are prepared and willing to do this and 

to take on this great challenge. 

The second thing is you would have a significant part of either 

NIH or the Center for Medicare and Medicaid Services actually trying to work in a collaborative way with the private sector to develop the technologies. One of the points that Meryl Comer makes 

is if it is your husband and they are larger than you, then just the 

single act of getting them back into bed is an enormous challenge. 

Well, there are technologies that should be designable to modify 

homes to enable you to take care of that kind of a challenge, and 

all of that modification ought to be a tax credit because enabling 

them to stay for an extra year or 2 years will more than pay in 

avoidance of long-term care facility costs to help them. 

So I think if your staff were trying—and we would be glad at the 

Center for Alzheimer’s Information to work with you on this. But 

if you were to start from what is the ideal care that should be happening, and how could we finance and structure and how could we 

help invent the technology for that? Then, frankly, you want that 

technology to become commercializable—— 

Senator DOLE. Right. 

Mr. GINGRICH [CONTINUING]. In a form where it is sold in retail 

stores at the lowest possible cost in a competitive environment. So 

I think that is how you want to design it. Then look at the current 

system, which is a fundamentally different system, and I also 

think, frankly, that a family based model has much less fraud and 

much less inappropriate use of resources than the institutionalized 

model. 

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

The CHAIRMAN. Thank you, Senator Dole. 

Senator Salazar. 

Senator SALAZAR. Thank you very much, Chairman Kohl. 

Let me ask a question to both Justice O’Connor and Speaker 

Gingrich, and that is if we look at the interim time period between 

now and the long-term finding of the cure. Some of the things we 

have talked about, that you have talked about in your testimony 

will require the kind of investment strategy that Speaker Gingrich 

37 

spoke about, the kind of development and use of electronic records 

and the like to understand the disease. 

But in the interim, say, the next 10 years, are there things that 

you think we ought to be focused on in terms of diagnosis, in terms 

of caregiving to those who are afflicted by the disease now? What 

are those steps, those things that we ought to be doing at the national level here that deal with the immediacy of those affected by 

the problem in the next 10 years or so? 

Justice O’Connor and then Speaker Gingrich? 

Justice O’CONNOR. As far as I am concerned, I think we can hope 

for rather immediate response to the need to make the research 

more effective and to make it more likely that we can complete 

clinical trials on promising new approaches and do it quickly. Because as we pointed out, the returns are enormous if you can cut 

back by even 5 years the time that you are going to have to be totally incompetent as a person with Alzheimer’s. 

If you can reduce that by 5 years, you have made enormous 

gains, and we are on the threshold of that now. But we have to 

make the clinical trials broad based and more rapidly accomplished, and we have to provide the funding that will enable—I 

guess I learned something today. The National Science Foundation 

and NIH in a position to provide help right now for these things, 

not 20 years from now—now. Because we can save a great deal of 

Federal money if we just reduce the time that somebody has to 

be—— 

Senator SALAZAR. Let me sharpen my question, if I may, just a 

little bit. I understand the importance of doing that and those kind 

of investments. But there are, I think, among many Americans who 

have family afflicted by these diseases even the lack of understanding when they see a family member who is showing the symptoms of this kind of disease or for family members knowing what 

all their options are out there. 

Today’s effort, I think, is putting a big spotlight on this issue, 

and it is very important that we do that. But there are some interim steps, it seems to me, before we ultimately get to the results 

of our clinical trials, before we do whatever we can do with pharmaceuticals, before we look at major reforms in how we deliver 

healthcare to—in a long-term care setting. Those things are going 

to take time. 

Are there things we could do immediately to help those afflicted 

by Alzheimer’s and families today that would be something we 

could do for next year and the following year? 

Justice O’CONNOR. Probably in the area of tax credits. For certain things, you could act very quickly. 

Senator SALAZAR. So things like tax credits for family caregivers 

and the concept that Speaker Gingrich was speaking about previously. 

Speaker. 

Mr. GINGRICH. If I can add to that, and I think it is a very good 

question, and I hope I can be clear enough. First of all, to pick up 

on what Justice O’Connor just said, I think this idea of changing 

the resource flow. 

If you were to bring in, and I think your staff could actually help 

structure this, and it is not necessarily something you do at a hearVerDate Aug 31 2005 15:36 Feb 18, 2009 Jkt 000000 PO 00000 Frm 00041 Fmt 6633 Sfmt 6633 H:\DOCS\46898.TXT SAG PsN: JOYCE
38 

ing. But if you were to work with, say, the Alzheimer’s Association 

and develop a series of where you looked family by family. What 

happens from the time—and again, some of you have had this experience in your own family. But what happens from the time you 

first learn about this diagnosis? What is the progression? 

We need to build an anticipatory medical model where when it 

is something that we know is happening, we can get ahead of it. 

So, we can say, gosh, this means if you want to stay in your home, 

you probably need to think right now about refitting your home. 

OK? That should be a deductible expense or a tax credit, and you 

all ought to decide. 

But my guess is, again, if you could win the scoring argument 

and you could say to the Congressional Budget Office, OK, if I can 

get people to be for every month they don’t go to a long-term care 

facility, what could I afford to help their family with financially? 

You could almost immediately craft a tax policy that would be 

budget neutral or actually would be better for the budget. 

Second, to the best of my knowledge, there is no place today 

where people can turn—and again, I think the Alzheimer’s Association probably comes close to this. But there is no real place—we 

need a multilingual audio/video online capability to learn this stuff. 

As you know, it has got to be multilingual because it is not just 

about our language, but it is also about our cultural subsets because different groups learn different things in different ways, and 

they ask different questions. 

People have got, we have got to find ways to get information out 

much faster and much more pervasively than we get it out today, 

and that means that it has to be Internet-based and iPod-based 

and cell phone-based. For the very poor, the cell phones actually 

are a very powerful medium of communication. 

Third, you really want to have someplace working to popularize 

and commercialize technology. My guess is that the best technology 

for helping people care for people with Alzheimer’s is stunningly 

better than the average technology, and the average technology is 

a lot better than what people who don’t know anything are currently doing. 

So, if you could accelerate—and places like the MIT aging lab are 

perfect examples of this. If you could accelerate the development— 

I, frankly, got this idea from the head of the MIT aging lab, who 

said to me one day, when these things are products and they are 

on the shelf at Wal-Mart and Costco and other facilities, then you 

have changed the world. As long as these things remain out here 

as professional things that you get only through a specialized company, you will never bring the price down, and you will never have 

this scale access. 

Well, you have a marketplace of 6 million people and their families today. It is going to be a much bigger marketplace in 10 years. 

How do we get that marketplace to have access to the best technologies at the lowest cost so it becomes commonplace to have best 

care? 

Last point I guess I would make because I do want to push back 

a little bit on one of your assumptions, and here I think that Justice O’Connor and I are absolutely in agreement. Even just making 

the breakthroughs on the next quality of medicine, making the 

39 

breakthrough on marginal improvements and getting it to every 

doctor is, in fact, an enormous blessing to the person who is in the 

middle of this. 

I wouldn’t undervalue that in the next 5 years we could have 

very substantial improvement in protocols and in medicines available in Alzheimer’s, and that it is both a long-term breakthrough 

to get to the equivalent of a vaccine. It wouldn’t be technically a 

vaccine, but to get to the equivalent of something that postpones 

it dramatically. But in the interim, there are a lot of steps that are 

more than palliative that make life dramatically better. 

I think at a human level, we should not underestimate how do 

we accelerate the FDA, how do we accelerate the drug companies, 

and how do we accelerate the doctor learning about what is available as rapidly as it becomes available? All of these things will improve the quality of life now for people rather than 10 years from 

now. 

Senator SALAZAR. Thank you. 

The CHAIRMAN. Thank you, Senator Salazar. 

Senator Coleman. 

Senator COLEMAN. Thank you, Mr. Chairman. 

First, Justice O’Connor, thank you. One of my favorite quotes is 

Maimonides, who once said, ‘‘Each of us should view ourselves if 

the world were held in balance and any single act of goodness on 

our part could tip the scales.’’ I think you have led a life of tipping 

the scales. You tip them today, too, by shining a light on the caregiver, and I hope that folks are watching and read about this understand there are places to go and things to do and that we care. 

Mr. Speaker, you talk about a community-based model. That is 

your thought about the benefit of folks being treated at home. A 

lot of your discussion on the funding side has been OMB/CBO. But 

CMS is a big player here. We have got—I represent a State that 

medical technology is a very big deal, and we are creating remote 

monitoring, a whole range of things. 

Can you—I have been here almost 6 years. You were here for 

more than three times that. Can you talk to me a little bit about 

CMS, about how do we—I mean, for the things that are already out 

there or that are in the stages of being early development, how do 

we get them to be funded so folks understand what Senator Collins 

talked about, get away from the penny wise, pound foolish approach? 

Mr. GINGRICH. Actually, my reflection, when you pointed out I 

have been here more than three times longer than you, was I felt 

much older, and I am now much more worried about things than 

I was when this hearing started. [Laughter.] 

Well, let me go back to a piece that I said a while ago and give 

you a specific example. Don’t underestimate how much the Office 

of Management and Budget is the enemy of fundamental change at 

the Center for Medicare and Medicaid Services. A letter was sent 

last year giving $100 million to a clinic in New Orleans with the 

specific provision that none of the money could be spent on information technology. 

Now, given every speech the President has made on this topic, 

every speech Secretary Leavitt has made on this topic, that letter 

should be a scandal. That letter was directly caused by OMB. NoVerDate Aug 31 2005 15:36 Feb 18, 2009 Jkt 000000 PO 00000 Frm 00043 Fmt 6633 Sfmt 6633 H:\DOCS\46898.TXT SAG PsN: JOYCE
40 

body at HHS thought that was rational. So the power of relatively 

obscure bureaucrats who have hidden for 25 years and learned 

nothing to say no is enormous. 

Second, I would suggest to you that part of what you want to do 

at CMS, and this would go contrary to some models of public bureaucracy, you need a lot more fellowship programs both to get 

CMS career civil servants out into the private sector and to get the 

private sector into CMS. I would try to look for a model, and I 

know that Andy von Eschenbach has been working this at the Food 

and Drug Administration, and he is exactly right. 

We live in an era when you cannot have policy made by people 

who are 5, 10, and 15 years behind the curve. So, part of what I 

would look at is how can you dramatically open up the Center for 

Medicare and Medicaid Services both so if staff gets to go out and 

work at any one of a wide range of private sector things, but how 

many people from CMS have ever worked for Evercare? How many 

people from CMS have ever worked at a modern public hospital facility? 

As opposed to they have been sitting in Baltimore—and these are 

decent people. This is not an attack on them as human beings. But 

if you spend your entire life in a risk-averse environment filling out 

paper, it is really easy to say no and not understand the human 

cost of the decision you just made. So I would look for literally reshaping CMS. 

In my book ‘‘Real Change’’ and in a YouTube video called ‘‘FedEx 

vs. Federal Bureaucracy,’’ I tried to outline the scale of change we 

need. If you look at the speed and accuracy of UPS and FedEx, 

which track 23 million packages a day while they are moving and 

enable you to go online and track them yourself at no cost, and 

compare that with the inability of CMS to do that and ask yourself 

why couldn’t all Medicare funding be electronic? Every charge filed 

every night and have the same data flow that you get at McDonald’s? 

McDonald’s files 37,000 stores worldwide every night. You would 

then be able to track—first of all, you would flush out fraud almost 

immediately. Second, you would begin to have all sorts of knowledge about what is really happening and what should we really be 

changing. It is a totally different model. 

I would encourage you to look seriously at fundamental structural reform of CMS, and I would start by creating very substantial 

capacity for people to go out for a year of sabbatical and to bring 

in people for a year of internship in a way that would open the 

place up to a new generation of ideas. 

Senator COLEMAN. Thank you, Mr. Speaker. 

Thank you, Mr. Chairman. [Applause.] 

The CHAIRMAN. Thank you. Thank you, Senator Coleman. 

Senator Lincoln. 

Senator LINCOLN. Thank you, Mr. Chairman, and thanks to both 

of you all for bringing your passion and interest here today and 

sharing it with all of us. 

We also appreciate your work on the Alzheimer’s Study Group. 

You know, this is a disease, however, those of us that are close to 

the disease know it all too well. But it is, indeed, a silent disease 

41 

until you become in contact with it, and then you begin to realize 

a little bit of what you have talked about. 

I know Senator Grassley and I have worked on tax benefits for 

long-term care and the ability to encourage people to learn more. 

I guess that is my question is your recommendation on early education on Alzheimer’s, not just on the effects of the disease. Obviously, that is critically important, and the Speaker mentioned 

training and if you could track the disease. 

When my dad became so ill that we needed assistance in the 

home, my mother needed assistance, we found a woman who was 

unbelievable. Dad was her, I think, sixth Alzheimer’s patient, and 

she stayed with all of her patients until they passed away. 

But she could tell us the signs. She could say, you know, he is 

not going to be—he is going to be on these ups and down. We need 

to get him up. The weather is pretty. We need to get him outside 

because pretty soon he is not going to be able to do that. You can 

tell by the different things that you notice. Those are critical to 

quality of care, quality of life, but certainly, how you deal with the 

disease and the education of it. 

So I guess my question is early education not just on the disease, 

but also on care expenses. Dad was diagnosed early. Mother didn’t 

realize the expenses she was going to see, nor had she prepared for 

that, the advanced care planning. Some of the things that I think 

most people, quite frankly, or often people don’t realize that Medicare has no funding for long-term care necessarily. They think 

Medicare is there, and it is going to be there for them in their golden years. But in terms of long-term care, it doesn’t cover that. 

So I guess if it is long-term care, in terms of both the care—educational component of the caregiving, but also the financial literacy 

that needs to be there in an educational component and how we 

do a better job of that. I think Speaker Gingrich, I think the statistic here in our country is for a baby girl that is born today in 

this country, she has a 50 percent chance of becoming a centenarian. My husband’s grandmother will turn 111 in the next couple 

of months, and she still plays bridge 4 days a week, still lives on 

her own. 

I mean, people are living longer, and we are going to see greater 

numbers. So this financial literacy, this education and care literacy 

is going to be critical not just when you see the disease, but before. 

Any suggestions on how we do a better job at that? 

Mr. GINGRICH. Well, let me say, first of all, I think that is about 

as good a statement as I have ever heard. I think you did an extraordinary job just now. [Applause.] 

I think you really captured a lot of different pieces. So I would 

almost suggest that we could start with you, and part of what you 

are saying is how could we have Alzheimer’s caregivers in a way— 

and this is a serious example. The woman who came and helped 

your father, was she in a setting where she, in fact, could buildup 

a pension fund over time? Or was she an independent contractor 

in such a form that—— 

I mean, if we wanted to make it relatively easy to be an Alzheimer’s caregiver, how could we build an ability, and this will go 

to something that Ron Wyden has worked on, but maybe to make 

it possible in every State to create an Alzheimer’s caregiver coop 

42 

in a way that they could have group insurance. They could have 

pension buildup and a defined contribution. But to think about this 

group of people who are an integral part of what you are describing. 

Second, your financial planning point is exactly right. There is a 

totality of life, and this is one of the great problems. This is why 

I suggested, and Rob Egge and I have been working on the idea 

of some kind of coordination. Nobody looks at the totality of this. 

So, you have different silos in the Government, each of which 

cheerfully runs around doing the best that it can at its piece, but, 

in fact, life is lived across the silos. So, the idea of developing, I 

think, that kind of approach is very important. 

I don’t quite know how to say this. When you go back home, just 

ask your audiences how many people have a cell phone with a camera. Then ask them how many of them have a laptop or some kind 

of computer. Nicholas Negroponte came by the other day, and I 

have a couple of his computers that were originally designed for 

the Third World that cost $187. Peru is buying one for every child 

in the country. 

I sent it to my two grandchildren and got this wonderful phone 

call from Maggie, who is 8 years old, who said, ‘‘Oh, Grandpa, this 

package came, and I thought it was for mother, and it was for me.’’ 

She and her brother Robert are now playing with this computer. 

We haven’t stopped and worked back from that is the potential 

we have to educate the country. We don’t have to set up—if you 

go down and look at the Centers for Disease Control, which is a 

place I admire much and I have helped as much as I could over 

the years, you look at the way that people think, they still think 

in a paper-based bureaucratic, gradual model. You know, why do 

we put posters up somewhere? 

You live in an age when what you ought to say is, gee, what is 

the Facebook application for Alzheimer’s that everybody could have 

friends in a Facebook kind of model or a MySpace model. I am not 

company specific here. But we are living in a different world, and 

we don’t know how to design a Government whose agility and information flow operates like that. 

So, in a sense, you would like to be able to say—because you 

think about it. You have 100 Senators and 435 House members. 

You could literally communicate to every American. You could say 

to every American through your various techniques if you have Alzheimer’s occur in your family, go to this site, and the site will lead 

you through how you can plan. 

We need to think on that scale of creating democratic smality, 

democratic information for the entire country, leading them to 

commercializable, lowest possible cost tools to enable them to maximize the control over their lives. This is true, by the way, about 

much more than just the Alzheimer’s patient. 

But I thought what you said was really eloquent and really powerful, and I don’t know that I can do much to add to it. 

The CHAIRMAN. Thank you very much, Senator Lincoln. 

Behalf of all of us on the panel, people here in the room and people all across America, we want to thank you both for giving us 

your time, your thoughts, and your passion here this morning as 

we move toward hopefully coming up with a cure for Alzheimer’s 

43 

disease as well as treatment. Hearing from you today has made a 

big difference, and so giving us your time was very useful for something we know you care deeply about. 

Thank you both for coming. [Applause.] 

The CHAIRMAN. We will now move on to the second panel. The 

first witness on the second panel is Mr. Jackson, and I would like 

to ask Senator Smith to introduce him. 

Senator SMITH. Thank you, Mr. Chairman. 

As I said in my opening remarks, it is a particular pleasure I 

know for me, and I am sure I can speak for Senator Wyden on this 

as well, to welcome Chuck Jackson to the Aging Committee of the 

Senate. Chuck Jackson is age 50. He was diagnosed with early 

onset Alzheimer’s disease. Since his diagnosis 4 years ago, Chuck 

has made it his goal to inform the American public about living 

with early onset Alzheimer’s. 

As a former member of the National Alzheimer’s Association’s 

Early Stage Advisory Group, Chuck is well known and respected 

for his insight and understanding of the issues that persons with 

the disease face. 

So, Chuck, thank you for being here, and we look forward to 

hearing your testimony today. 

The CHAIRMAN. Thank you, Senator Smith. 

The second witness on this panel will be Suzanne Carbone. Mrs. 

Carbone is a family caregiver for her husband, Robert, and she 

works full time as a librarian in Rockville, MD. Prior to his diagnosis at age 70, her husband was dean of the College of Education 

at the University of Maryland. 

Mrs. Carbone credits the support and services she received, including caregiver education programs, with allowing her to care for 

her husband for 10 years at home while also working full time. She 

is a native of Wisconsin, and she currently resides in Silver Spring, 

MD. 

We are also fortunate to have with us today Dr. Rudy Tanzi. Dr. 

Tanzi is a professor of neurology at Harvard University and serves 

as the director of the Genetics and Aging Research Unit at Massachusetts General Hospital. He participated in the pioneering study 

that led to the location of the Huntington’s disease gene, and he 

is credited with isolating the first familial Alzheimer’s gene. 

Dr. Tanzi is the fifth most cited scientist in the field of Alzheimer’s disease research, and he was a 2007 recipient of the Ronald and Nancy Reagan Alzheimer’s Research Institute Award. 

We thank the three of you for being with us, and we will now 

take your testimony, starting with Mr. Jackson. 

STATEMENT OF CHARLES JACKSON, ALZHEIMER’S PATIENT, 

ALBANY, OR 

Mr. JACKSON. Good morning, Chairman Kohl. 

The CHAIRMAN. Thank you. 

Mr. JACKSON. Good morning, Chairman Kohl. Mr. Smith, thank 

you for inviting me here, and all the rest of you distinguished 

guests that are here to listen to what we have to say today. 

I am Chuck Jackson. I am from Albany, OR. I was actually 

raised in the panhandle of Oklahoma. That is where this family 

picture I have relates. I took the liberty to bring that today because 

44 

I am speaking not only for these 14 people, my mother and her 13 

siblings, but I am also speaking for my cousins and the other people that branch out from our family tree. 

I have what is called the PSN2 genetics that came via what we 

call the Volga River Germans that had moved from Germany to 

Russia and then to the United States. They brought with them two 

or three of the genes that cause early onset with them. 

More than 20 years ago, my Aunt Esther testified at one of the 

first Alzheimer’s hearings held in Congress. Unfortunately, the 

former President Ronald Reagan later vetoed the legislation, and 

we have not done much since that time. My experience with Alzheimer’s started in 1967 on myself. When I was 13 years old, I became my mother’s caregiver. My mother Rachel had started and exhibited Alzheimer’s similar to what my aunts and uncles had previously that I had been able to look at and see and be with. 

I received a telephone call from my brother Danny in May of 

2004. I was working at the time at Community Services Consortium as an employment specialist. He had gone through an experience or research with Dr. Rachelle Doody of Baylor University on 

a combination set of drugs called a cocktail, and he had done so 

well in the study on these drugs that at the end of it, she suggested 

that he call everyone in our family who was over the age of 50 let 

them know they had the family gene. 

So he gave me the call that day, and I started going to my doctor 

to get on this set of drugs, this cocktail, to preempt the onset of 

the Alzheimer’s is what we thought. In August of that same year, 

I was given a very bad evaluation by my employer. It was quite 

devastating to me, actually, because nobody had talked to me about 

it during the year or brought it up until that day, and after having 

worked there for 14 years with 95 and 97 percent evaluations from 

the past, it was really hard for me to take. 

But that same—after that Friday, the next Monday, I had an appointment with my doctor to finish getting on the meds that my 

brother had called about. My doctor asked to see that particular 

papers that my employer had given to me in the evaluation. After 

looking at them, he asked me a question, ‘‘Have there been any 

other strange things happening in your life that you haven’t told 

me?’’ 

There were a few that I had planned to tell him, but when I 

would come in to see him, they just—I couldn’t remember them. I 

couldn’t talk about them. He looked up at me, and he said, ‘‘We 

might as well consider that you have already started the disease. 

We are not preempting it at this point.’’ I really wasn’t prepared 

for that statement from him. I was shocked. 

I hadn’t really been catching the signals I should, my body had 

been giving me. My family had not caught those signals, but my 

co-workers and my employer had. Now they thought I was doing 

things on purpose. 

In the one—at one time that year, I had walked into the job site 

with a black shoe and a brown shoe on. Having gotten dressed in 

the dark, I thought I hadn’t noticed the shoes. But my co-workers 

were laughing, and one of them finally walked up to me and asked, 

‘‘Why are you wearing a brown shoe and a black shoe?’’ I glanced 

down, and I said, ‘‘I didn’t know I was.’’ 

45 

So my supervisor sent me home to change my shoes, which I did 

when I got home. When I got home, I put on the other pair of shoes 

that also happened to be one brown and one black and returned to 

the job. Of course, she was really angry at me. 

There are things that I have learned during this time that I have 

gotten this diagnosis. I have learned how to live with the disease. 

I have learned how to adapt to it. I would like to say that the research that is available needs to be directed directly at the effectiveness of keeping a person in the home as long as possible after 

they have been evaluated by a doctor and having given a diagnosis 

of Alzheimer’s because we are better off in the home than we will 

ever be in a care center, and we will last longer. 

I once worked for the Burlington Northern Railroad in Montana. 

I am sorry. I know I have deviated somewhat from my written 

statement. I apologize for that, but I guess that is just kind of how 

it happened for me. I am now at age 54. I was actually 50 when 

I got my diagnosis. I am on Medicare at this time. It was a 2-year 

battle for us. My Representative Hooley’s office helped me a great 

deal with that. 

I am receiving Medicare, and I have a supplemental plan that I 

have bought from the PERS program there in Oregon so that my 

medications are taken care of as much as I can take care of them 

and my doctor’s bills. I receive about $2,000 a month from two different disability programs. One is from Regency, which is a private 

program, and the other part is from my PERS retirement system. 

By the time I get done paying with my home and where my food 

costs and the medical costs, I don’t have any money left at the end 

of the month. I think you should know that it is very costly to have 

this disease. 

I have worked for the last 3 years to deal with this disease in 

such a way that we have quit thinking about it being an age disease. This is not—though there are more people over the age of 65 

that have the disease, this disease is not an ageism disease. 

Most people could get through life without having this disease 

and live to a long, long old age without any problems. But our society has come to a point where we believe that when a person gets 

to a certain age and they have Alzheimer’s, that is normal aging. 

I want to tell you it is a disease. It is not normal aging. Otherwise, 

I would be 85 right now. 

I know there is numbers of people with early onset in this country that have not been counted, and I often wondered why no one 

has ever counted how many people are actually involved in the disease in this country. But we have a fear of our Government and 

our friends and family knowing the disease that we carry in these 

families, and we try—well, our predecessors, my mother and my father’s group of generation didn’t want to talk about such things. 

If we would have talked about this in the 1960’s, we would have 

had more done today. But no one would talk about it. We have the 

ability in this country to put together a way for us to defeat this 

disease or at least make it available a good drug that will keep a 

person in the home at the same level as I may be functional today. 

I mean, the small goal of going to the moon and back is—this is 

more or just as important as finding the moon and coming back to 

it. So it is imperative that the Congress keeps the Federal commitVerDate Aug 31 2005 15:36 Feb 18, 2009 Jkt 000000 PO 00000 Frm 00049 Fmt 6633 Sfmt 6633 H:\DOCS\46898.TXT SAG PsN: JOYCE
46 

ment to Alzheimer’s research now because I want to be an Alzheimer’s survivor. I don’t want to die with this disease. I would 

rather have a heart attack. 

Much like the breast cancer survivors who are all alive today because of advance in cancer research and treatment, I would like to 

be a survivor of Alzheimer’s. I would prefer or I want my daughter 

Rachel Jackson, that is with me today, not to have to live through 

this disease and not have to worry about it. I have taken this road 

mostly for her and then also for the untold thousands of us that 

are uncounted, that have not found a voice to tell people they have 

early onset Alzheimer’s in their family. 

My plea to you is that you support the Alzheimer’s Association 

initiatives to get the research back on track so that we can stop 

this disease in its tracks and then find a cure for it. 

I thank you for your indulgence in listening to me and your patience and the understanding that you are giving me. 

Thank you. [Applause.] 

[The prepared statement of Mr. Jackson follows:] 

47 


46898.013
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The CHAIRMAN. Thank you, Mr. Jackson. 

Mrs. Carbone. 

STATEMENT OF SUZANNE CARBONE, ALZHEIMER’S PATIENT 

CAREGIVER, SILVER SPRING, MD 

Ms. CARBONE. Good morning. Thank you for the opportunity to 

talk with you about our family’s experience with Alzheimer’s today. 

My husband, Bob Carbone, was diagnosed with Alzheimer’s 

about 8 years ago. Interestingly enough, he has an identical twin 

brother who has no symptoms of the disease. Bob was born in 

Plentywood, MT, where his immigrant father was a section foreman for the Great Northern Railroad, and his mother was a homemaker. 

Bob earned a master’s degree from Emory University and a 

Ph.D. from the University of Chicago. He was a special assistant 

to President Fred Harrington at the University of Wisconsin, and 

later he became the dean of the College of Education at the University of Maryland. 

He was always very interested in the political process, and so he 

actually ran for the Maryland State legislature in 1982 and garnered a very good percentage of the votes. In January 2007, Bob 

moved into assisted living when caring for him at home was no 

longer an option. Today, he can no longer speak a coherent sentence. He cannot dress himself. He cannot take care of his personal 

needs. My family and I are not sure if he recognizes us, and my 

family is with me today. 

I am just one of millions of caregivers who are faced with difficult and heartbreaking decisions of care. Every day, I meet yet 

another caregiver who needs help and does not know where to 

turn. In fact, in the taxi this morning, we met another person who 

knew another person who has Alzheimer’s. Everywhere I turn, people with whom I speak know people with Alzheimer’s. 

Upon a diagnosis, families are swept into a sea swell as they are 

confronted with the changing levels of ability and changing patterns of behavior of their loved one. My husband and I were no different. We left the neurologist’s office with a few prescriptions and 

minimal advice. We should have been able to leave that office with 

something that said these are the areas in your life that are going 

to change, and you need to address these issues during Phase 1, 

2, and 3 of this disease. Here are the best contacts. These are the 

top resources in your area to whom you can turn. 

I am, therefore, convinced that we need to transform the way 

that we support patients and families caught in the tangles of this 

disease. I struggled to patch together a system of support, drawing 

on public and personal networks to cope with issues of physical and 

emotional care, financial and legal planning, transportation, driving, in-home care, daycare, and finally, assisted living. 

It felt as though we were on shifting sand because as soon as I 

had a care plan in place, my husband’s needs would change, and 

then we had to seek out additional solutions to our situation. On 

top of that, we would have to convince him to accept the new solution. 

One of the most useful resources that I found was a 6-week caregiver training program funded in part by a grant from Montgomery 

50 

County, MD, the Department of Health and Human Services, 

Aging and Disability Services. From it, I learned about the process 

of dementia, its stages and treatments. 

I learned about communication needs. I learned about techniques 

to use during various stages of the disease. We had someone talk 

about environmental modifications to one’s home. Finally, I learned 

about hiring and working with in-home care, daycare, respite care, 

and assisted living. 

These workshops were invaluable, and they provided me with insight, information, skills, support, and contacts. Actually, the people who attended these workshops became a support group for one 

another. I urge that this type of program serve as a model and be 

replicated widely in local communities. 

I am still working full time as a manager at the Rockville library 

in Montgomery County, MD. I must work in order to pay for the 

care that my husband receives. He receives excellent care, but the 

costs are huge—$73,000 last year. 

If I become ill, how will we manage? Given the fact that my husband’s father lived to be 100, it is entirely possible that he will outlive me. Then the cost of his care will be passed on to our two children. We must find ways to help families with this tremendous financial burden. 

In conclusion, I look forward to the day when there are stronger, 

more cohesive community-based networks of resources to support 

patients and families with Alzheimer’s. I am encouraged by the 

idea of memory centers, which I am just beginning to learn about, 

as seen at several universities throughout the country. 

These could provide access to evaluation, diagnosis, and treatment, as well as a whole system of referrals to caregiver services 

and support groups. I wish that we had had such a resource for 

Bob. 

I urge Congress to immediately increase the investment in research to find better ways to diagnose and treat Alzheimer’s. I call 

on policymakers to pass legislation to support individuals with Alzheimer’s and their families, especially legislation that would develop and improve patient-based customized care plans, provide 

families financial assistance in caring for loved ones with Alzheimer’s disease, and that expands paid leave for caregivers. 

Thank you very much for the opportunity to share a portion of 

our family’s experience with Alzheimer’s. I commend you for holding this hearing on this very critical issue. 

Thank you. [Applause.] 

[The prepared statement of Ms. Carbone follows:] 

51 


46898.015
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46898.016
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46898.017
54 

The CHAIRMAN. Thank you, Mrs. Carbone. 

Dr. Tanzi. 

STATEMENT OF RUDOLPH TANZI, Ph.D., DIRECTOR OF 

GENERICS AND AGING RESEARCH UNIT, MASSACHUSETTS 

GENERAL INSTITUTE FOR NEURODEGENERATIVE DISEASES, 

PROFESSOR OF NEUROLOGY, HARVARD MEDICAL SCHOOL, 

BOSTON, MA 

Dr. TANZI. Thank you, Chairman Kohl and Ranking Member 

Smith, for giving me this opportunity today to provide an update 

on Alzheimer’s research and particularly our focus on how studies 

of the early onset genes of the type that affect Mr. Jackson have 

more than any other piece of knowledge in Alzheimer’s taught us 

about the causes of this disease and have guided current clinical 

trials, some of which I think are very promising. 

Twenty-five years ago at Harvard Medical School, when I was a 

student, I had focused my attention—this is during the early days 

of the human genome mapping—on trying to identify the genes for 

early onset and familial Alzheimer’s. In 1987, we discovered the 

first Alzheimer’s gene called the amyloid precursor protein. In 

1995, we discovered the exact gene mutation that runs in Mr. Jackson’s family by studying the DNA from the Volga German families 

of which your ancestry comes. That gene and the other genes that 

we have looked at have taught us so much about this disease. 

But before getting into the science, first I wanted to mention that 

none of the discoveries or drug trials I will mention this morning 

would have been possible without the courageous involvement of 

patients like Mr. Jackson and their families. We could do nothing 

without them. 

This is also why the Genetic Privacy Act and GINA is so important because it allows families to participate without fear of discrimination. I do think that GINA could go farther toward longterm care insurance. It covers employment and health insurance, 

but long-term care is what many folks with Alzheimer’s need, and 

so it would be nice to see that expanded even farther into longterm care insurance. 

Second, I think is very important to emphasize that even though 

Alzheimer’s drugs today are in trials after being developed by pharmaceutical companies, the original seeds of creativity and of basic 

biological and genetic discoveries almost all came from academic 

research. So, it is important to remember that while the big 

pharma and biotech take the drugs to clinical trails and bring them 

to the market, which is immensely important, if we dry up funding 

or don’t have sufficient funding for the academic institutions, the 

basic research funded by NIH and nonprofit foundations, you basically dry up the pipeline. The seeds of creativity almost inevitably 

come from academia with nonprofit and Federal funding. 

Third, I want to just mention that history has taught us that it 

takes about 20 years for basic research to evolve on and reach a 

stage of clinical trials, new drugs, and patients. This is exactly the 

case right now in Alzheimer’s. The first Alzheimer’s gene was 

found in 1987, more in the early 1990s, and now here we are in 

2008 and some of the first clinical trials testing drugs that would 

treat the disease itself, not just the symptoms, are underway. 

55 

So what did we learn? Well, if we look at the three early onset 

genes that we know about, they all lead to the same culprit. That 

culprit is a small protein called A-beta, also called the amyloid beta 

protein. This small protein A-beta ultimately, in the end, gets deposited in the senile plaques. But we are learning most recently is 

it is doing most of its damage before it gets into the plaque. 

So we used to concentrate more on the plaques as the battleground, but now we are seeing that small assemblies of this A-beta 

protein as they stick together—2 of them, 3 of them, up to 12 of 

them stuck together—go into synapses. In these synapses, nerve 

cells are trying to communicate, and they create short circuits. So 

they actually short circuit the neural circuitry, and this leads to 

cognitive dysfunction. 

So what we have seen over the last few years is that the battleground has been moving away from the plaques and more toward 

the actual nerve connections or synapses, where this A-beta protein 

gets in the way of normal neurotransmission. 

Now, current Alzheimer’s drugs are in the category of better than 

nothing. They treat the symptoms. There is usually minimal benefit and is usually temporary, as most families can attest to, and 

caregivers. But, now, there are several Alzheimer’s therapies that 

are in trial that are aimed at hitting these toxic A-beta proteins in 

the brain. 

So if you think about it, OK, if the problem in Alzheimer’s is you 

have an excessive accumulation of the A-beta protein in the brain, 

how do you fix that? Well, there are three different ways. You can 

limit the production of the A-beta in the brain, and that is being 

done with protease inhibitors. There are trials going on there. 

You can try to clear the A-beta out of the brain as a second approach. The immunization approach is trying to attempt that, plus 

some other strategies. 

Third, you can try to neutralize the toxicity of the A-beta. You 

can try to stop the most toxic form of it from actually ever taking 

root in the brain, and there are trials, testing, trying to hit that 

part of the pathway as well. 

So I think the good news is on all three of these fronts, where 

we are trying to hit what looks like the major culprit as we learned 

from the early onset gene studies, that there are exciting trials in 

the works. I provided details about these trials, the companies that 

are doing them, their prospects, all in the supplemental information that was submitted to the Committee. 

Now, again, I want to emphasize before closing that the most 

promising drugs we have in the pipeline that are in the clinic came 

from studies of these early onset Alzheimer’s genes. Even though 

these mutations are rare, they have taught us more than anything 

about the cause of this disease. 

All told, we know about four Alzheimer’s genes, those three early 

onsets, plus one late onset one called ApoE. But these four genes 

account for only 30 percent of the inheritability of Alzheimer’s. So 

imagine what we could do with the other 70 percent. I mean, if just 

these genes have taught us so much and most Alzheimer’s research 

is focusing on these genes and their proteins, let us get the other 

70 percent. 

56 

So my lab and other labs around the world are trying to find 

those other genes. We are specifically heading up what we call the 

Alzheimer’s Genome Project, which is funded by the Cure Alzheimer’s Fund and the NIMH. We have gotten longstanding funding for this from NIA as well. We have a paper coming out this 

summer that will describe our first results of some of the new Alzheimer’s genes. 

There are also other groups around the world who are all pecking away at this, working together, consortium—as a consortium to 

do this as well. So I am glad to say that geneticists are working 

together to solve this problem and get the rest of these genes. 

The reason why, is that history has shown us every new Alzheimer’s gene provides a new avenue for potential treatment. The 

gene teaches us about biological pathways that are going wrong in 

the brain. Now we don’t want to go in there with drugs and change 

the gene. We are not talking about gene therapy. 

When we find a new gene, it teaches us what is going wrong, and 

then we know how to fix exactly what is broken. Those are the 

trials that are going on now based on the early onset genes we 

have studied for the last two decades. Ultimately, the idea will be 

that these genes will also allow us to predict the disease early. So, 

thank God, GINA passed, and we hope it goes further. 

We are converging now toward a personalized medicine approach. The vision would be to do genetic prediction and then to 

personalize treatment with a cocktail of drugs that hit different 

parts of the pathway to best treat an individual based on their genetics, their own genome. So the mantra would become ‘‘early prediction, early intervention.’’ 

Right now we are in the pioneering days of that vision. While 

there is good reason to be optimistic, there is also more work to do 

before we reach this goal, and scientists will need to work more 

closely than ever with clinicians, patients, the Government, nonprofits, and pharma to make this happen. We all have our role. We 

are well on our way, but the time to really push hard is now. 

So thank you once again for giving me the opportunity to 

present. 

[The prepared statement of Dr. Tanzi follows:] 

PREPARED STATEMENT OF DR. RUDOLPH E. TANZI

Thank you Chairman Kohl and Ranking Member Smith. I am very pleased and 

honored to be here this morning to address the Special Committee on Aging. 

I am a Professor of Neurology at Harvard Medical School and a geneticist at Massachusetts General Hospital. 

Twenty five years ago, as a student at Harvard Medical School, I participated in 

the very first human genome mapping effort to locate a disease-causing gene. That 

gene was responsible for Huntington’s disease, a horrible neurodegenerative movement disorder. Shortly thereafter, I focused my attention on mapping the genes for 

early-onset familial Alzheimer’s disease, the type affecting Mr. Jackson. 

In 1987, my lab discovered the first AD gene and we identified two more in 1995, 

all three causing early-onset AD. This morning, I will summarize the tremendous 

amount we have learned about the causes of AD and the ongoing trials of new Alzheimer’s drugs made possible by studies of these early-onset AD genes. 

Before getting into the science, I would like to make three important points: 

First, none of the discoveries or drug trials I will mention this morning would 

have been possible without the courageous involvement of patients, like Mr. Jackson. 

Second, few, if any, novel Alzheimer drugs being developed by the pharmaceutical 

industry today would have been possible without the original seeds of creativity and 

57 

basic biological and genetic discoveries that have come from academic research, primarily supported by federal and other non-profit funding for Alzheimer’s research. 

Third, it generally takes about 20 years for basic research findings to reach the 

stage of clinical trials in patients. This is the case for the discovery of the first Alzheimer’s genes in 1987, biological studies of those genes, and current clinical trials 

in 2008. 

By studying the genetic defects in the three early-onset AD genes over the past 

two decades, we have learned that the culprit in Alzheimer’s is a tiny protein we 

call A-beta. As it accumulates to excessive levels in the brain, it short-circuits communication between nerve cells, ultimately killing them. The result is major cognitive dysfunction and memory loss. 

While current Alzheimer’s drugs only treat the symptoms offering minimal and 

only temporary benefit to patients, several new Alzheimer’s therapies currently in 

clinical trials are aimed at actually stopping the progression of the disease by curbing accumulation of toxic A-beta molecules in the brain. 

This can be achieved in three ways: 1. Limiting the production of A-beta; 2. Clearing A-beta out of the brain; and 3. Neutralizing A-beta’s toxic properties. Novel 

drugs of all three classes are currently in clinical trials, including a promising one 

that my lab helped develop over the last ten years. And, I would be happy to provide 

more details about these therapies. 

While I am optimistic about the success of these trials, history dictates that the 

first drugs out the gate are not always the best ones. We will clearly need to take 

many shots on goal to cure this disease; and, will most likely, someday, be prescribing a cocktail of different drugs to effectively treat Alzheimer’s. 

The most promising new drugs have been made possible from the knowledge 

gained from the studies of the gene defects causing early-onset Alzheimer’s. However, these three genes together with one other (for late onset) account for only 30% 

of the inheritance of Alzheimer’s disease. Imagine what we could do with the other 

70% identified. 

To find these, my lab at MGH is currently heading up the ‘‘Alzheimer’s Genome 

Project’’, (primarily funded by a non-profit foundation and the NIMH). A paper describing the first set of genes is currently under review at a major scientific journal, 

and we expect to announce several novel Alzheimer’s genes this summer. I would 

be happy to provide you with more details here, as well. 

As history has shown, every new Alzheimer’s gene provides a novel avenue for 

potential treatment while also improving our ability to predict risk for Alzheimer’s 

early in life. Ultimately, the convergence of genetic knowledge and effective Alzheimer’s drugs will allow for a ‘‘personalized medicine’’ approach to this devastating 

disease: ‘‘early prediction, early intervention.’’ These are the pioneering days of that 

vision. 

So, while there is good reason to be optimistic, there is also a lot more work to 

do before we reach our goal. Scientists will need to work more closely then ever with 

clinicians, patients, the government, non-profits, and pharma to make this happen. 

Thank you. 

The CHAIRMAN. Thank you. [Applause.] 

Dr. Tanzi, is there a reasonable hope that we could one day find 

a cure for Alzheimer’s? In the short term, how close are we to finding a way to delay the disease’s progression? 

Dr. TANZI. Well, I think most of the drugs that are in trials now 

that are trying to hit the A-beta protein have a chance to both 

treat the disease and our best hopes to reverse the disease. But 

they could also be used in folks whom we know are at risk before 

symptoms to prevent the disease. 

I think that of the drugs in trials now, some of them have a 

chance of working. But it will only be the first wave, and we also 

know from history that the first wave is not always the best wave. 

But it opens the door to the next wave of drugs that do the same 

thing, but in a more potent fashion. 

So my guess is that in about 5 years at least a couple of these 

clinical trials will bring us some drugs that work, but not necessarily the best ones. Then, over the next 5 to 10 years, they will 

open the door to new drugs that keep making improvements on 

these same mechanisms of action. I am hopeful that within 5 to 10 

58 

years, we will have a cocktail of drugs that will at least be stopping 

disease progression. 

Then you have to trust that the brain can regenerate. That if you 

just stop the attack, that the brain has a chance to come back. I 

am optimistic about that. It is kind of controversial how well can 

the brain come back. Well, it really depends on when you hit in the 

disease. So, again, early diagnosis, early prediction becomes the 

key. 

The CHAIRMAN. Well, if early diagnosis is so important, you are 

not recommending that everybody have a test? 

Dr. TANZI. Well, I think that—I would think that 20 years from 

now, it would be routine that you know your genetic risk factors 

for the big diseases that threaten healthy aging—Alzheimer’s, cancer, diabetes, cardiovascular disease. Then you will be already setting up for lifestyle changes, supplements, or drugs, if necessary, 

to prevent those diseases. 

We don’t have the genetic tests yet. These are still the early 

days, the foundational days, but everything is in place to come up 

with a good test. We don’t have the tests yet to predict Alzheimer’s, 

except in these rare early onset cases. But we are moving there, 

and we are hoping that the ability to reliably test and predict will 

dovetail with the drugs that come out of the knowledge gained 

from studying those genes so that we can empower patients with 

the ability to stop or prevent the disease once they have their test 

done. 

The CHAIRMAN. Ms. Carbone, what advice would you give to 

those who are just starting to care for a loved one in this Alzheimer’s? 

Ms. CARBONE. Well, there were several things that happened 

when we received the diagnosis. The first thing that I did was to 

decide that we needed to make something positive out of this devastating news. Because my husband is a twin, we immediately 

tried to get into a twin study. So, I think you have to think about 

all the people who have this disease and see what it is that you 

personally can do. 

My husband and I also renewed our vows. I knew that I would 

have to strengthen the commitment that we had to one another, 

and so that is a second thing that we did. 

A third thing that I did was to immerse myself in everything Alzheimer’s, and I read extensively. I attended every lecture I could 

find. I joined support groups, and I must say that I think that having the knowledge from other caregivers and sharing that with one 

another was really one of the strongest supports throughout this 

experience, and it continues to be. 

But I would not be afraid of letting people know that you are a 

point person for Alzheimer’s. We all need to be. So, if we can 

spread that idea throughout our society, I really would encourage 

everyone to do that. 

There is an addendum that I would like to add, and I suppose 

it is because of my career as a librarian. But remember that libraries are very trusted institutions in this country. Remember that 

they provide the electronic access to information that Speaker 

Gingrich was also talking about. 

59 

In Montgomery County, we have a place, we have a Web site 

called Senior Site. Now if you think a little bit about how that kind 

of site could assist all of us with information in terms of distributing information about Alzheimer’s, that is a way to distribute information throughout the country through the public library system. 

Maybe there are other ideas like this. So those are some suggestions. 

The CHAIRMAN. Thank you. 

Senator Smith. 

Senator SMITH. Dr. Tanzi, you, I think, rightly noted the importance of Federal funding as sort of the seed of research, and I am 

aware that it goes to many universities and, obviously, NIH. I wonder with those dollars, as discoveries are made, how well is that 

information shared, or is there some proprietary quality that takes 

hold when these things are discovered? 

Dr. TANZI. When discoveries are made in academic institutions, 

our lifeline really is more funding, and that means publication. So 

we have to publish our findings for the good of science. Also there 

is the ‘‘publish or perish’’ rule. If you don’t publish, when you try 

to renew your grant, it is unlikely that you are going to get a favorable review even for the best ideas because you have to show that 

you can finish the job. 

So I don’t think there is a problem in academia with sharing of 

information or publishing information. Particularly in Alzheimer’s 

disease, I see that there is an increasing vector toward collaboration. All of the geneticists who used to compete in the old days to 

find the early onset genes, which were kind of the low-hanging 

fruit, are now working together to solve the more complex question 

of what are the various risk factors, genetic risk factors that work 

with the environment to cause the more common late onset form. 

So I don’t see holding proprietary information as an issue. 

Senator SMITH. You see sharing as expanding? 

Dr. TANZI. I think I see this, at least in my own world of Alzheimer’s research and particularly in genetics and molecular studies, I think there is just a great trend right now toward it. 

Senator SMITH. There are no impediments out there that we 

should be aware of? 

Dr. Tanzi. No. 

Senator SMITH. The marketplace of academia is working then? 

Dr. TANZI. Yes, I think that it is great because if you look at all 

of the major drugs to come out of pharma, you will find a relatively 

low budget versus pharma budgets that lead to biological breakthroughs, the original seeds of discovery in academic institution 

using Federal and nonprofit funding—— 

Senator SMITH. How about research taking place abroad? How 

much collaboration and information sharing is there between the 

United States and other countries? 

Dr. TANZI. Quite a bit. I don’t want to sound too U.S.-centric, but 

I think that the research here is amongst the best, if not the best 

in the world. We do collaborate with, of course, folks in particularly 

in Europe and in Japan. But mainly for sharing in this case, for 

example, Alzheimer’s family DNAs and reagents and things we 

60 

need to do our studies, we have international meetings all the time. 

The international Alzheimer’s meeting this year will be in Chicago. 

So it does go internationally. But I really consider this country 

the clear leaders in research. 

Senator SMITH. Suzanne and Chuck, I really am touched by your 

personal stories, and thank you for having the courage to share 

them, one as a caregiver and the other as someone suffering from 

early onset Alzheimers. 

Chuck, as I inferred from your comments, that your brother—I 

don’t know whether he has early onset as well—but he encouraged 

you to participate in these trials. You did that. I didn’t sense that 

you felt that was a very positive thing, and I wonder if it was or 

if I misheard you, if it was a positive thing? Do you recommend 

others with early onset participate in these trials? 

Mr. JACKSON. Well, I am sorry if I misled you. It was very positive. My brother—— 

Senator SMITH. It was positive. 

Mr. JACKSON. He was further along when they started the study 

than I am right now. 

Senator SMITH. Does he have early onset as well? 

Mr. JACKSON. Yes, he is 60, 61 right now. He is in Texas, in assisted living in San Antonio, TX. His wife lately had to leave him 

alone and go to Amarillo because her father, who is elderly, had 

some brain surgery. I wasn’t able to tell her that I was going to 

be here until last night when I finally got a hold of her by phone 

to let her know where I was at. 

Senator SMITH. It sounded to me also from your testimony that 

your experience with your employer was not necessarily positive as 

your diagnosis was being made. I wonder if there are some suggestions you could give to employers as early onset affects employees, 

some things that they might do to enable those who suffer from 

early onset to continue working longer and productively? 

Mr. JACKSON. I think that is going to happen as more people get 

used to the idea that early onset is actually in the workforce. I 

know some people who have the diagnosis and diagnosed in their 

40’s that have been allowed to stay—their employers have kept 

them there, and the physician is the same physician that they had 

until they couldn’t perform. 

The problem with perceptions about Alzheimer’s is some of our 

early onset problem in that most people don’t think a person that 

looks as young as 45 or 50 or 55 can possibly have Alzheimer’s. 

There is education that needs to be done in the local areas. 

There is that little bit of reversed ageism on both sides of the 

fence with research. Most researchers limit the age of a person to 

be in a trial either at 60 or 55. Am I still correct on that? That 

leaves a lot of people that are in their 30’s and 40’s and 50’s. I am 

not available to get into several different trials right now because 

I am 54 that are ongoing. 

The researchers have looked at it as if there are two separate 

diseases out there. One is late onset and one early onset. I know 

that the companies that are doing the work are expecting a return 

for the research dollars and that the larger amount of people is in 

the older ages past 65 and that they are actually trying to develop 

drugs that affect that group. But if you read some of the research 

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numbers, you will find that more—more early onset people have 

been used in research that is then used for people over 65. 

The problem has been for two things. A lot of people in their 

80’s—70’s and 80’s don’t want to go into research. Also, that age 

group that came out of World War II, which is my mother’s generation, born in the ’30’s and lived through the Dust Bowl and then 

World War II, they don’t like to talk about their medical problems 

and history. They were silent about it in our farms because it was 

stoic and it was shameful to talk about having a disease like this. 

My generation, as a baby boomer, I think I have been quoted in 

the New York Times as, ‘‘We are mouthy. We are not going to take 

this silently.’’ That has kind of been where I have been at for the 

last 3 years. I am not going to go down silently. I would like the 

disease stopped before it affects my next generation, that we owe 

them something. 

Senator SMITH. Well, you are showing great courage, and I am 

glad you are mouthy. That will benefit many in the future, Chuck, 

and we are grateful to you and to all of you who have been our witnesses today. 

The CHAIRMAN. Thank you, Senator Smith. 

Senator Wyden. 

Senator WYDEN. Thank you, Mr. Chairman. 

This has been a terrific panel. You all are really the face of the 

challenge—patients and caregivers and researchers and wonderful 

advocates. I just have a couple of questions. 

First, Ms. Carbone, three cheers for librarians. My mother was 

a librarian. I think you all are really one of the country’s great 

underappreciated treasures, and I so appreciate the thoughtful way 

that you have laid out what has affected your family. I am just interested in following up on one point. 

Did you or your husband ever have a period where you tried to 

buy private long-term care insurance? The reason I ask because I 

was kind of looking over the chronology of events, and of course, 

these bills for long-term care are just crushing. I mean, it is easy 

for people to go through $60,000, $70,000 in a year. 

What I wanted to ask because I saw that your husband ran for 

the legislature in 1982, and in 2007, then he moved into assisted 

living. At any point, say, after 1982, did you all investigate private 

long-term care insurance and look at how perhaps something like 

that would be useful for you? 

Ms. CARBONE. I am so sorry that we did not take advantage of 

long-term care when we could, and I suppose that is the message. 

People need to plan ahead for this kind of impact on their lives. 

The answer is, no, we did not really seriously consider that we 

would need this kind of support. 

Senator WYDEN. I am grateful that you are speaking out this 

way in a public forum like that, and I hope that message will go 

out far across the land because, clearly, this is something that can 

be of great value to families. 

Now, there are a lot of challenges we know with private longterm care insurance as well. For example, in our bipartisan legislation, the Healthy Americans Act, we try to make sure, for example, 

there is going to be some inflation protection for families because 

what happens is they can buy a policy, and then all of a sudden 

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in a few years, it isn’t worth a whole lot more than the paper it 

is written on because of inflation. 

But I think that there needs to be a lot more awareness of this, 

and I think the fact that you are willing to come and publicly say 

that that was something that might have been of great help to you 

and your family is so important. 

I think the other thing that I want the country to see is that if 

we don’t have some private long-term care insurance in the future, 

what is going to happen is we are going to have two people who 

are going to need some assistance. Because I saw also in your testimony that you put in this grueling schedule. You are there working. Then on top of it, you are trying to assist your husband. 

As sure as the night follows the day, when people are putting in 

essentially two full-time grueling, emotionally draining kinds of efforts like that, it is hard to do it physically. So—— 

Ms. CARBONE. There is a spiraling effect on the caregiver. 

Senator WYDEN. Well, you have said it very well, and I just appreciate your being here. 

Chuck, a question for you, and you put up that picture of your 

family, and I can tell there are a lot of Jacksons and the lineage 

goes back a long ways. But you are not just speaking for the Jackson delegation—— 

Mr. JACKSON. No. 

Senator WYDEN. You are speaking for millions and millions of 

people, and it is a great service. We think you are an Oregon treasure, but you are really a national treasure. I just have a couple of 

questions for you. 

What do you want to say to all those people in this country who 

right now are kind of fearful? They are a little bit reluctant to come 

forward. I notice now even with these new testing products that 

are available, and there are scores of new products out where you 

can test yourself, and I am sure some of them are a lot better than 

others, people are saying they are frightened about coming forward. 

It is easy to see why they are frightened about coming forward 

because until we have a new policy that really zeros in on better 

prevention and treatment, they are worried about what is ahead 

when there is a diagnosis. So what would you like to say today to 

all of those who are fearful and reluctant to come forward? 

Mr. JACKSON. OK. Let me think just a second. One thing that 

happens is our early onset group were not caught by our—people 

we were living with or married to. We were discovered by our employers. A lot of people before they even have the knowledge that 

they possibly can have Alzheimer’s will be sent by their employer 

or go by themselves to get a diagnosis, and the doctor will tell them 

that they have a number of different things, including depression 

or a whole list of things before a doctor will finally say maybe we 

should find out if you have Alzheimer’s. 

I have friends of mine that I have met since 2004 coming to the 

forums and coming to the Alzheimer’s Association who were diagnosed after 7 long years of searching from doctor to doctor and trying to skip from job to job that they had been laid off from because 

of failures in the job site, who finally gave them a diagnosis of Alzheimer’s because they didn’t know that they had it in their family 

history. 

63 

We had in our first meeting that my family attended here in 

Washington, DC, 3 years ago with Alzheimer’s Association, we 

had—the first night we had a young woman, two young women and 

their father come in and sit down at our table. The next thing I 

know, one of them jumped around the table, grabbed me and 

hugged me, and said, ‘‘We are related.’’ Her mother had Alzheimer’s for 5 years, and they had come to that conference to find 

out if they could find the families that they were connected to that 

also were in the research study with Dr. Tanzi. 

They found us that day just by chance, and ever since then, I 

have really thought there is ways—there is reasons for my being 

here today. The possibilities of finding a better test for a dementia 

test needs to be examined and researched for the people who are 

in their younger years because a lot of doctors don’t want to turn 

around to someone that is 34, 35, 54, 45, ‘‘I think you might have 

Alzheimer’s,’’ until they have done all the other tests for any other 

thing that can happen to their body. 

Does that make sense? 

Senator WYDEN. It does. It seems to me, just as Ms. Carbone 

made people more aware of the need to look at private long-term 

care insurance and opportunities to plan for the future, what you 

have done, Chuck, is made it a lot more likely that people are willing to come forward, work with employers and family and be part 

of this new ethic of prevention and treatment. 

I will close with one comment for you three, but I think it also 

goes to the whole discussion. It is not exactly a secret that in this 

Congress there has been a lot of brawling between Democrats and 

Republicans and pretty fair amount of partisanship. 

What you all have done and Alzheimer’s advocates, and particularly the Alzheimer’s Association today, is you have really brought 

the Congress together. You brought the Congress together regardless of party, regardless of philosophy, that this isn’t a partisan 

challenge. This is an American challenge. 

This has been a terrific panel. Our thanks go to our Chairman, 

who consistently speaks up for older people and their families. Senator smith, my colleague from Oregon, as well, and I just want to 

thank you three. It has been a long morning. The room is not as 

full as it was 3 hours ago. But your views and your comments we 

are going to get out across the country because the American people need to hear them, and we thank you all for your service. [Applause.] 

The CHAIRMAN. Thank you very much, Senator Wyden. 

I would like to echo his comments of gratitude to you for the wisdom, the experience and knowledge that you have brought to the 

table here this morning, which will be transmitted—it has been out 

across our country. 

Alzheimer’s—disease it has been—a disease that, as we can tell 

from this hearing this morning, is of the greatest interest to everybody in our country for all the reasons that we have described this 

morning. Hearing you talk about it from your various vantage 

points makes a big difference and helps the process to move along 

considerably to get to that day that we are all looking forward to. 

So we thank you for giving us your time, your energy. We appreciate all that you are going through and your contributions. 

64 

With that, the hearing is closed. 

[Whereupon, at 1:11 p.m., the hearing was adjourned.] 

(65) 

A P P E N D I X 

PREPARED STATEMENT OF SENATOR ROBERT P. CASEY, JR. 

Mr. Chairman, thank you for scheduling this important hearing on Alzheimer’s 

disease, a disease that afflicts millions of our older citizens and has a profound impact on their families and our nation. I also want to thank our witnesses for coming 

here today to share their stories, their experiences and their recommendations about 

how the federal government can better assist those living with Alzheimer’s disease, 

as well as their families and caregivers. 

The Alzheimer’s Association estimates that 5.2 million people in the United States 

live with Alzheimer’s disease and over 8 million individuals over the age of 65 will 

have it by 2030. Pennsylvania has the second oldest population in the country after 

Florida and it is estimated that 250,000 individuals are living with Alzheimer’s disease in Pennsylvania today. 

This is a significant number of people and as we all know, and as I’m sure Justice 

O’Connor and our other witnesses will discuss today, Alzheimer’s disease does not 

just affect the individual living with it, but family members, friends and many others including caregivers who selflessly devote their lives and careers to caring for 

individuals with Alzheimer’s disease. 

There are almost ten million Americans caring for people with Alzheimer’s disease 

and other forms of dementia. An additional 250,000 caregivers are children between 

the ages of eight and eighteen. This illustrates that burden placed on young family 

members when there is no one else to provide assistance. 

With the aging of the baby boom generation, we can expect to see even more individuals diagnosed with Alzheimer’s disease. It is estimated that one in eight baby 

boomers will develop Alzheimer’s disease and this will put increased hardship and 

pressure on families, communities and our health care system. 

While anyone connected to this disease feels the biggest cost in human terms, the 

economic cost is significant as well. It was estimated in 2007 that unpaid caregivers 

of people with Alzheimer’s disease and other dementias provided care valued at $89 

billion. Medicare spends more than three times on beneficiaries with Alzheimer’s 

disease than any other disease and it is estimated that by 2010, Medicare spending 

on Alzheimer’s disease will reach $160 billion per year. 

There is no one single protocol that suits all patients with Alzheimer’s. Every person diagnosed with this disease progresses differently and every person responds 

differently to treatment. This is why continued research is so critical. 

Until we find a cure for this ravaging disease, we must work to ensure individuals 

with Alzheimer’s disease and those who love and care for them receive the help they 

need. Hubert Humphrey always said societies are judged by how they treat the children, the elderly and the sick. We much continue to hold ourselves to his high 

standards and help those who cannot help themselves. 

JUSTICE SANDRA DAY O’CONNOR RESPONSES TO SENATOR HILLARY RODHAM

CLINTON’S QUESTIONS

Question. In your written testimony, you stated that caregivers of Alzheimer’s patients are more likely to develop depression and suffer compromised immune systems. In your experience caring for your husband, John, what assistance has been 

most helpful in supporting your physical and mental health? What can the federal 

government do for caregivers like yourself across the country? 

Answer. I have not sought help for my own physical and mental health thus far. 

I assume some medicare coverage will help if I do decide to consult a doctor. We 

must rely on our regular health care resources. 

66 

DR. RUDOLPH TANZI’S RESPONSES TO SENATOR HILLARY RODHAM CLINTON’S

QUESTIONS

Question. You testified that the most fruitful research has originated from the 

study of early onset Alzheimer’s genes, which enables you to delay the onset of people at risk. You also noted that it would be 20 years before genetic testing became 

routine. In the short-term, how do you recommend best identifying those at risk for 

Alzheimer’s disease? 

Could you provide us with more detail regarding new drugs that attack the toxic 

A-beta molecules in the brain? How soon will these drugs be available? Are they 

well-tolerated by individuals? 

In your view, how critical is understanding the genetic causes of Alzheimer’s in 

developing treatment and an eventual cure? Can you elaborate on the ‘‘Alzheimer’s 

Genome Project’’? What is the relationship between the ‘‘Alzheimer’s Genome 

Project’’ and the NIH-funded Human Genome Project? 

In your research, what have you discovered on the link between Traumatic Brain 

Injury (TBI) and Alzheimer’s disease? 

Answer. 1. With regard to how we can ‘‘best identify those at risk for Alzheimer’s 

disease’’, currently, we can only predict risk with 100% accuracy in patients with 

early-onset (<60 years), familial Alzheimer’s disease that carry a mutation in one 

of the three familial genes that we and other’s discovered between 1987–1995. These 

three genes are the amyloid precursor protein (APP) and presenilin 1 and 2 (PSEN1 

and PSEN2) genes. We presently know of >200 different mutations in these three 

genes, which when inherited, cause early-onset Alzheimer’s with virtual certainty. 

These mutations are rare, accounting for only 1–2% of all Alzheimer’s and half of 

the early-onset, familial cases, e.g. the type that afflicts the family of Chuck Jackson 

who also testified at the hearing on May 14, 2008. 

The majority of Alzheimer’s is the sporadic, late-onset (>60 years) form. We know 

from studies of identical twins, that at least 80% of the common ′′sporadic′′ lateonset form of Alzheimer’s also involves inherited genetic risk factors. The only confirmed genetic risk factor in this category is the APOE gene. A risk variant of this 

gene, called ‘‘epsilon-4’’occurs in ∼25% of the general population and in ∼50% of Alzheimer’s population. Unlike the early-onset, familial gene mutations, inheritance of 

the APOE risk variant only confers increased risk for the disease, and does not 

guarantee onset. Thus, it is a ‘‘susceptibility’’ gene that requires other genetic and 

environmental factors to trigger, the disease. As such APOE is neither necessary 

nor sufficient to cause Alzheimer’s, and is not intended for use as a diagnostic or 

predictor of the disease. It is only approved for use as a ‘‘differential diagnostic’’, 

i.e. for use in a patient presenting with dementia to help determine whether it is 

due to Alzheimer’s disease. Neither APOE, nor any of several dozen ‘‘putative’’ and 

unconfirmed Alzheimer’s genetic risk factors are approved for use as sole diagnostics 

or predictors of the common, late-onset, sporadic form of Alzheimer’s disease. To 

someday reliably and accurately predict late-onset Alzheimer’s disease, we must 

first ‘‘identify and confirm’’ the full set (likely dozens) of genetic risk factors that 

work together with each other (and environmental factors) to trigger this disease. 

As an aside, it should be noted that companies like 23andMe, Navigenics, Knome, 

and DeCode are already charging considerable sums of money for anyone who wishes to pay to be tested for the ‘‘unconfirmed’’ genetic risk factors for Alzheimer’s and 

other common diseases, e.g. cardiovascular disease, cancer, and stroke. In my view, 

it is highly premature and both medically and commercially irresponsible to be conducting these tests. To reliably predict disease risk, we will first need to establish 

the full set of ‘‘confirmed’’ risk factors and then determine how they work together 

to influence risk in a ‘‘multigenic’’ manner. As these companies become more popular, the public will need to be increasingly informed and educated about the fact 

these tests are not yet accurate, reliable, or scientifically sound. I am concerned that 

these tests may increasingly lead to unwarranted anxiety or a false sense of security 

about one’s genetic destiny as these companies services become more ‘‘trendy’’. 

In specific response to your question about how we can best identify the full set 

of genetic risk factors for Alzheimer’s disease, we must first ‘‘identify’’ novel Alzheimer’s gene candidates in genetic association studies and then attempt to ‘‘confirm’’ them by testing them for replication in independent Alzheimer’s samples. We 

are approaching this in two ways. First, we have established a very successful and 

highly accessed website called AlzGene (http://alzgene.org), which is supported by 

the Cure Alzheimer’s Fund. This site compiles and systematically displays all of the 

data generated in all available publications (>1600) that have addressed Alzheimer’s 

genetics. Most importantly, for novel genetic risk factors that have not yet been confirmed but are gradually being tested for replication in multiple independent Alzheimer’s populations, we compile all of the published data for the candidate risk facVerDate Aug 31 2005 15:36 Feb 18, 2009 Jkt 000000 PO 00000 Frm 00070 Fmt 6601 Sfmt 6601 H:\DOCS\46898.TXT SAG PsN: JOYCE
67 

tor and perform genetic analyses on the sum data to determine which novel genetic 

risk factors for Alzheimer’s have the highest likelihood of being confirmed as bona 

fide risk factors for Alzheimer’s disease. To date, over 1500 gene variants have been 

tested as genetic risk factors for Alzheimer’s, of which we (AlzGene) have found that 

only 29 have yielded statistically significant results toward confirmation. Every 

week, we update these analyses with the ultimate goal of establishing the complete 

set of confirmed Alzheimer’s genetic risk factors, which determine one’s predisposition for the common, late-onset form of Alzheimer’s. With the overwhelming success 

of AlzGene, we have established similar sites for Parkinson’s disease (http:// 

pdgene.org) and schizophrenia (http://szgene.org). The CDC has recently indicated 

interest in eventually doing the same for all common human disorders with complex 

genetics. For the success of all these efforts, Alzheimer geneticists will have to work 

closely with each other and patients and their families to test candidate risk factors 

in as many independent Alzheimer’s populations as possible. GINA should go a long 

way in providing protection to patients and their family members who participate 

in these studies. However, GINA covers employment and health insurance, but not 

life insurance or long-term care insurance. Thus, I believe that there is still more 

work to do on a comprehensive genetic privacy act as we move into the age of personalized medicine. A second strategy for finding the remaining Alzheimer’s genes 

is our Alzheimer’s Genome Project, which is described in more detail below in answer #3. 

With regard to when we will be able to do routine genetic testing for life-long risk 

of Alzheimer’s disease and other common age-related disorders, e.g. stroke, diabetes, 

cancer, currently, we can already reliably predict many of the rare, early-onset, familial forms of these diseases, which generally represent 1–2% of these diseases. 

But, for the vast majority of cases, which are late-onset, we will first need to identify and confirm dozens of genetic risk factors that work in concert to determine 

one’s life-long risk for disease. For Alzheimer’s and other common, complex genetic 

diseases, we have established four ‘‘confirmed’’ genetic risk factors and are still investigating dozens of ‘‘putative’’ risk factors that have yet to be confirmed. To reliably and accurately predict disease risk, we will ultimately need the complete set 

of ‘‘confirmed’’ risk factors and we will need to understand how they work together 

in a ‘‘multigenic’’ manner. While great progress is being made, these are still the 

early and ‘‘pioneering’’ days of this effort. Great progress is being made via AlzGene, 

the Alzheimer’s Genome Project and other Alzheimer’s genetics efforts. However, 

given the scientific challenges of identifying and confirming novel genetic risk factors, I believe that it will take 5-10 more years to assemble the first reliable 

multigenic tests for late-onset Alzheimer’s disease and other common, age-related, 

complex genetic diseases. Routine testing should be possible in 15–20 years. And 

once again, the genetic testing currently being sold by companies such as 23andMe, 

Navigenics, Knome, and DeCode is, in my opinion, entirely premature and scientifically unsound, and it would be prudent to educate the public about this. I and other 

geneticists are currently doing so through the media, e.g. in an upcoming episode 

of Nova on PBS. 

2. The second question regards the new drugs that target toxic A-beta molecules 

in the brain. These drugs are aimed at retarding disease progression by curbing the 

accumulation of the neurotoxic protein, A-beta, in the brain. The four established 

AD genes (APP, presenilins 1 and 2, and APOE) have taught us that the common 

pathological feature in the AD brains of patients carrying defects in any of these 

four genes is the excessive of accumulation of neurotoxic A-beta. There are two basic 

ways to lower A-beta levels in the brain: Promote the clearance of A-beta from 

brain, or curb the production of A-beta in the brain. Details on the anti-A-beta drugs 

currently in development and their prospects for success are provided in a separate 

word file (Abeta—AD—drugs.doc). 

With regard to the predicted timeline, I believe the first anti-A-beta therapies 

should hit the market in 2–3 years, but as is often the case with the first wave of 

therapies, these will not necessarily be the best ones. They will, however, open the 

door for more effective versions of anti-A-beta therapies, which should come on line 

in 5–7 years. 

With regard to the question of safety, generally, I believe this class of drugs will 

be well tolerated with one exception. We will need to carefully watch for adverse 

events, e.g. micro-hemorrhages and encephalitis, from immunotherapy approaches 

involving active vaccination or passive immunization. 

3. Regarding the third question of how critical is ‘‘understanding the genetic 

causes of Alzheimer’s in developing a treatment and eventual cure’’, the vast majority of researchers and clinicians in the Alzheimer’s field would agree that the contribution of genetics to solving the mystery of Alzheimer’s disease has been unmatched and unprecedented. The genetic component of Alzheimer’s disease is very 

68 

strong with at least 80% of cases involving inheritance, according to large twin studies. Most of what we now know about the etiology and pathogenesis of Alzheimer’s 

disease has come from the discovery and characterization of the four known Alzheimer’s genes (APP, PSEN1, PSEN2, and APOE). Moreover, most Alzheimer’s 

therapies currently in development, e.g. anti-A-beta therapies have been made possible from studies of the four known Alzheimer’s genes, particularly, three earlyonset genes. 

In 1987, we, and others, reported the isolation of the first AD gene (APP) then 

went on to co-discover two more early-onset genes (presenilin 1 and 2) in 1995. I 

wrote about these discoveries and their impact on Alzheimer’s research in my book 

‘‘Decoding Darkness: The Search for the Genetic Causes of Alzheimer’s Disease’’ and 

would be more than happy to send the Senator and her staff a copy. In addition 

to these early onset genes, a late-onset genetic risk factor gene, APOE, was discovered in 1992. These four genes account for only 30% of the inheritance of AD with 

70% still remaining a mystery. If one considers what the field has accomplished 

with the known genes, imagine what we can achieve with the remaining 70%. Every 

new gene we identify and confirm as a bona fide genetic risk factor in AD provides 

a new biological target for drug discovery while also enhancing our ability to predict 

and diagnose the disease. While, I am generally optimistic about the ongoing clinical 

trials of anti-A-beta therapies, we must ready ourselves for the possibility that they 

may not be sufficient to fully treat or prevent the disease, or may even fail. This 

is why we must identify the genes underlying the remaining 70% of the inheritance 

of Alzheimer’s. As history has shown us, every new gene we can identify will provide 

another shot on goal to effectively treat, prevent, or even cure this disease. 

To elucidate the complete set of Alzheimer’s genes, labs all around the world are 

trying to identify the remaining AD genes. Toward this end, we are carrying out 

the AlzGene project (described above in answer 1 above) and the Alzheimer’s Genome Project (AGP). The AGP, which is based in my laboratory at Massachusetts 

General Hospital, is a three-year, approximately $3 million effort mainly being funded by the Cure Alzheimer’s Fund with additional support from the NIMH and NIA. 

We are scheduled to publish the first set of results by the summer of 2008. The AGP 

is the first family-based whole genome association study for Alzheimer’s disease, 

being carried out in over 1300 AD families. This study requires the newest technology, e.g. microarray genotyping ‘‘chips’’, sophisticated statistical analyses, large 

family samples for DNA, and especially, the many databases made possible by the 

NIH-funded human genome project. The databases have been absolutely essential, 

if not indispensable, to the success of the AGP and other efforts like it. They provide 

details about individual genes as well as the structure and organization of the 

human genome. We need this information to interpret or genetic findings from studies of patients and their family members. 

4. The fourth question regards the relationship between Alzheimer’s and traumatic brain injury (TBI). After age, family history, and gender, the greatest risk factors for Alzheimer’s disease are head injury and stroke. Over the past several years, 

we and others have discovered both stroke and TBI significantly increase production 

of the neurotoxic A-beta protein in the brain. This, in turn, leads to increased risk 

for Alzheimer’s disease over the ensuing years following injury. In 2007, we published the molecular mechanism by which stroke leads to increased generation of 

A-beta in the brain. Over the past year, we have found that TBI increases cerebral 

A-beta levels in the same manner. Consequently, we believe that those who suffer 

from a stroke or undergo head trauma, e.g. soldiers in Iraq and Afghanistan, also 

incur increased risk for Alzheimer’s disease. We are currently studying the molecular mechanism underlying the stroke/TBI-induced increase in A-beta in order to 

develop strategies to reduce A-beta generation immediately following brain injury. 

Such therapies could include the anti-Abeta drugs currently in clinical trials for the 

treatment of Alzheimer’s. If successful, one could envisage a medical protocol in 

which patients entering the emergency room or soldiers undergoing TBI in the battlefield would immediately be given such drugs to help ward off downstream risk 

for Alzheimer’s disease later in life. 

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