U.S. GOVERNMENT PRINTING OFFICE

74–734 ps WASHINGTON : 2001

S. Hrg. 107–134

DIABETES: IS SUFFICIENT FUNDING BEING

ALLOCATED TO FIGHT THIS DISEASE?

HEARING

BEFORE THE

PERMANENT SUBCOMMITTEE ON

INVESTIGATIONS

OF THE

COMMITTEE ON

GOVERNMENTAL AFFAIRS

UNITED STATES SENATE

ONE HUNDRED SEVENTH CONGRESS

FIRST SESSION

JUNE 26, 2001

Printed for the use of the Committee on Governmental Affairs

(

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(II)

COMMITTEE ON GOVERNMENTAL AFFAIRS

JOSEPH I. LIEBERMAN, Connecticut, Chairman

CARL LEVIN, Michigan

DANIEL K. AKAKA, Hawaii

RICHARD J. DURBIN, Illinois

ROBERT G. TORRICELLI, New Jersey

MAX CLELAND, Georgia

THOMAS R. CARPER, Delaware

JEAN CARNAHAN, Missouri

MARK DAYTON, Minnesota

FRED THOMPSON, Tennessee

TED STEVENS, Alaska

SUSAN M. COLLINS, Maine

GEORGE V. VOINOVICH, Ohio

PETE V. DOMENICI, New Mexico

THAD COCHRAN, Mississippi

ROBERT F. BENNETT, Utah

JIM BUNNING, Kentucky

JOYCE A. RECHTSCHAFFEN, Staff Director and Counsel

HANNAH S. SISTARE, Minority Staff Director and Counsel

DARLA D. CASSELL, Chief Clerk

PERMANENT SUBCOMMITTEE ON INVESTIGATIONS

CARL LEVIN, Michigan, Chairman

DANIEL K. AKAKA, Hawaii

RICHARD J. DURBIN, Illinois

ROBERT G. TORRICELLI, New Jersey

MAX CLELAND, Georgia

THOMAS R. CARPER, Delaware

JEAN CARNAHAN, Missouri

MARK DAYTON, Minnesota

SUSAN M. COLLINS, Maine

TED STEVENS, Alaska

GEORGE V. VOINOVICH, Ohio

PETE V. DOMENICI, New Mexico

THAD COCHRAN, Mississippi

ROBERT F. BENNETT, Utah

JIM BUNNING, Kentucky

LINDA J. GUSTITUS, Chief Counsel and Staff Director

CHRISTOPHER A. FORD, Minority Chief Counsel and Staff Director

CLAIRE BARNARD, Investigator to the Minority

MARY D. ROBERTSON, Chief Clerk

(III)

C O N T E N T S

Opening statements: Page

Senator Levin .................................................................................................... 1

Senator Collins ................................................................................................. 1

Senator Akaka .................................................................................................. 4

Senator Carnahan ............................................................................................ 5

Prepared statement:

Senator Cleland ................................................................................................ 37

WITNESSES

TUESDAY, JUNE 26, 2001

Mary Tyler Moore, International Chairman, Juvenile Diabetes Research

Foundation, Actress, living with diabetes, New York, New York .................... 6

Kevin Kline, Board Member, Juvenile Diabetes Research Foundation, Actor,

New York, New York, accompanied by Katie Zucker, age 13 .......................... 9

Jonathan Lipnicki, Actor, friend of a child with diabetes, New York, New

York, accompanied by Tessa Wick, age 10 ......................................................... 10

Captain James Lovell, former NASA Astronaut, son with diabetes, Lake

Forest, Illinois ...................................................................................................... 12

Allen M. Spiegel, M.D., Director, National Institute of Diabetes and Digestive

and Kidney Diseases, National Institutes of Health, Bethesda, Maryland .... 16

Hugh Auchincloss, Jr., M.D., Professor of Surgery, Massachusetts General

Hospital and Harvard Medical School, Boston, Massachusetts ....................... 18

James Robbins, President and CEO of Cox Communications, daughter with

diabetes, Atlanta, Georgia ................................................................................... 21

Greg Brenneman, Former Chief Operating Officer of Continental Airlines;

son with diabetes, The Woodlands, Texas ......................................................... 22

Rachel Dudley, age 15, Delegate, JDRF Children’s Congress, Southfield,

Michigan ............................................................................................................... 27

Andrew Webber, age 13, Delegate, JDRF Children’s Congress, Steep Falls,

Maine .................................................................................................................... 29

Eliza Jayne Kiley, age 5, Delegate, JDRF Children’s Congress, Vandergrift,

Pennsylvania, accompanied by her mother, Michele Kiley .............................. 30

Daniel Thaller, age 12, Delegate, JDRF Children’s Congress, Burlington,

North Carolina, accompanied by Jessica Thaller, age 13 ................................. 32

Caroline Rowley, age 11, Delegate, JDRF Children’s Congress, Houston,

Texas ..................................................................................................................... 33

ALPHABETICAL LIST OF WITNESSES

Auchincloss, Hugh, Jr.:

Testimony .......................................................................................................... 18

Prepared statement .......................................................................................... 74

Brenneman, Greg:

Testimony .......................................................................................................... 22

Prepared statement .......................................................................................... 79

Dudley, Rachel:

Testimony .......................................................................................................... 27

Prepared statement .......................................................................................... 82

Kiley, Eliza Jayne:

Testimony .......................................................................................................... 30

Prepared statement .......................................................................................... 85

Kiley, Michele:

Testimony .......................................................................................................... 30

Prepared statement .......................................................................................... 85

Page

IV

Kline, Kevin:

Testimony .......................................................................................................... 9

Prepared statement .......................................................................................... 56

Lipnicki, Jonathan:

Testimony .......................................................................................................... 10

Prepared statement .......................................................................................... 59

Lovell, Captain James:

Testimony .......................................................................................................... 12

Prepared statement .......................................................................................... 61

Moore, Mary Tyler:

Testimony .......................................................................................................... 6

Prepared statement .......................................................................................... 53

Robbins, James:

Testimony .......................................................................................................... 21

Prepared statement .......................................................................................... 78

Rowley, Caroline:

Testimony .......................................................................................................... 33

Prepared statement .......................................................................................... 89

Spiegel, Allen M.:

Testimony .......................................................................................................... 16

Prepared statement .......................................................................................... 63

Thaller, Daniel:

Testimony .......................................................................................................... 32

Prepared statement .......................................................................................... 87

Thaller, Jessica:

Testimony .......................................................................................................... 32

Prepared statement .......................................................................................... 87

Webber, Andrew:

Testimony .......................................................................................................... 29

Prepared statement .......................................................................................... 84

Wick, Tessa: .............................................................................................................

Testimony .......................................................................................................... 10

Zucker, Katie: ...........................................................................................................

Testimony .......................................................................................................... 9

APPENDIX

Letter to President Bush, from Senator Collins, dated June 11, 2001 ............... 38

Letter to Tommy G. Thompson, from Senator Collins and Senator Breaux,

dated February 21, 2001 ...................................................................................... 39

Letter from Tommy G. Thompson, with attachments, to Senator Collins,

dated May 24, 2001 .............................................................................................. 40

(1)

DIABETES: IS SUFFICIENT FUNDING BEING

ALLOCATED TO FIGHT THIS DISEASE?

TUESDAY, JUNE 26, 2001

U.S. SENATE, PERMANENT SUBCOMMITTEE ON INVESTIGATIONS, OF THE COMMITTEE ON GOVERNMENTAL AFFAIRS, Washington, DC.

The Subcommittee met, pursuant to notice, at 10 a.m., in room

SH–216, Hart Senate Office Building, Hon. Carl M. Levin, Chairman of the Subcommittee, presiding.

Members present: Senators Levin, Collins, Akaka, and

Carnahan.

Staff present: Linda Gustitus, Chief Counsel and Staff Director;

Mary D. Robertson, Chief Clerk; Laura Stuber, Counsel; Greg

Heath, Intern; Christopher A. Ford, Minority Chief Counsel and

Staff Director; Claire Barnard, Investigator to the Minority; Eileen

Fisher, Investigator to the Minority; Barbara Cohoon, Staff Assistant to the Minority; Bob Smith, Intern; Nancy Langley (Senator

Akaka); Felicia Knight and Priscilla Hanley (Senator Collins).

OPENING STATEMENT OF SENATOR LEVIN

Senator LEVIN. Good morning, everybody. Diabetes is a devastating disease which affects 16 million Americans, including over

600,000 people in my home State of Michigan. Today’s hearing

brings together about 200 children from around the country, some

very well-known Americans with household names, and some of

our top scientists, to help put a human face on what it is like to

live with diabetes. This hearing was initiated by Senator Susan

Collins of Maine, when she chaired this Subcommittee, and it is because of that initiative that we are all here today, I was delighted

to join with her, my staff, and her staff, working closely with the

Juvenile Diabetes Research Foundation, to make this hearing possible. I want to give the JDRF a special thank you. I give Senator

Collins a special thank you, and turn it over to her for her opening

statement.

OPENING STATEMENT OF SENATOR COLLINS

Senator COLLINS. Thank you very much, Mr. Chairman, for your

gracious remarks. I am very honored to serve as the co-chair of

JDRF’s 2001 Children’s Congress. I very much appreciate the

Chairman agreeing to chair this important hearing to examine the

impact that juvenile diabetes has had on children and their families. The work that I have done with Senator Levin and others in

the Senate on behalf of the 16 million Americans with diabetes has

2

been so rewarding, and it has been a privilege to work in partnership with the Juvenile Diabetes Research Foundation, whose commitment to finding a cure for this devastating disease is truly inspiring.

I also want to welcome our distinguished witnesses today, and in

particular the 200 delegates to the Children’s Congress, who have

traveled to Washington from every State in the Nation, to tell Congress what it is like to have diabetes, just how serious it is, and

how important it is that we fund the research necessary to find a

cure. I particularly want to welcome the two delegates from the

State of Maine, 11-year-old Kate Farrell, from Limestone, Maine,

and 13-year-old Andy Webber of Steep Falls.

As the founder and the co-chair of the Senate Diabetes Caucus,

I have learned a great deal in the last 4 years about this serious

disease, the difficulty and heartbreak that it causes for so many

American families as they await a cure. Diabetes is a serious, lifelong condition that affects people of every race, age, and nationality.

It is the leading cause of kidney failure, blindness in adults, and

amputations not related to injury. Moreover, diabetes costs our Nation more than $105 billion a year in health-related expenditures.

More than 1 out of every 10 dollars spent on health care, and about

1 out of every 4 Medicare dollars, are spent to treat people with

diabetes. The burden of diabetes falls particularly heavily on children and young adults with type 1, or juvenile diabetes.

Juvenile diabetes is the second most common chronic disease affecting children. Furthermore, it is one that they will never outgrow. The statistics alone are persuasive, but what really prompted

me to begin working on diabetes was meeting with more and more

people, like the children who are here today, whose lives have been

changed forever by diabetes. It is so important that all of you have

traveled to Washington today. You put the human face on all of the

statistics and all of the studies, and you children will help those

of us in Congress better understand and ultimately conquer this

terrible disease.

I remember very well the first meeting that I had with families

in Maine, whose children had diabetes, and I will never forget the

words of a little boy who told me that his greatest wish was that,

just once, he could take a day off from diabetes. Despite the fact

that it might be his birthday or Christmas, or another important

holiday, he could never take a day off from his disease. That conversation touched me so deeply, and that is when I knew that I had

to get involved, that I had to help lead the fight for more research,

so that we can prevent ultimately, better treat, and eventually cure

this disease, and I know that we can do it.

There is good news for people with diabetes. We have all been

encouraged by the ground-breaking research last year in which 12

individuals from Canada appear to have been cured of their diabetes through an experimental treatment involving the transplantation of islet cells. I believe that it is becoming increasingly clear

that diabetes is a disease that will soon be cured, and will be cured

in the near future if sufficient funding is made available. There is

simply no investment that promises greater returns for America

than its investment in biomedical research.

3

I have worked with Senator Levin and others in the Senate to

double our investment in biomedical research over the next 5

years, so that we can accelerate our efforts to find better treatments, a means of prevention, and, ultimately, a cure for diseases

like diabetes, and we are making progress. Our efforts have resulted in an increase in the budget for the National Institutes of

Health, from $13.6 billion to $20.4 billion over the past 3 years.

Last year, I worked closely with JDRF to expand and increase

funding for two special programs focused on diabetes research; one

that focused on juvenile diabetes, the other on diabetes affecting

our Native Americans. Our efforts, due in large part to the grassroots efforts of JDRF, were successful, and the funding for those

two programs was increased for each program, from $30 million a

year to $100 million a year.

There is no doubt in my mind that, in the past, diabetes research

was under-funded. These funding increases will help make up for

some of the past funding shortfalls, and it will help ensure that

more of the scientific opportunities in diabetes research are funded.

Our efforts have increased diabetes funding at the National Institute of Health (NIH) from $319 million in 1997, to more than $690

million this year. That is more than double, and you are the ones

who have made this possible, through your tremendous advocacy.

I am particularly looking forward today, not only to hearing the

testimony of those whose lives have been affected by diabetes, but

also from the medical researchers, who are out there on the front

lines and whose research is so promising.

Again, Mr. Chairman, I want to thank you so much for convening

this hearing. I look forward to hearing the testimony from all of

our witnesses, and in particular I want to thank all the children

who are here today. You are the reason that we are fighting so

hard to get the money necessary to combat these disease. Thank

you.

Senator LEVIN. Thank you.

[Applause.]

Thank you, Senator Collins, for your wonderful statement and

for your leadership. I am particularly pleased that we have three

Michigan delegates in the audience who have come to Washington

today to participate in the Second Juvenile Diabetes Research

Foundation Children’s Congress. Rachel Dudley, who will be testifying before us today, is a 15-year-old from Southfield, Michigan;

Philip Porado is a 13-year-old from Rockwood, Michigan; and Mali

Korc is an 8-year-old from Grand Rapids. I thank them. I thank all

you young folks who are here today, and from around the country,

for coming here and telling your stories of what it is like to live

with diabetes.

These children and our other witnesses will testify and attest to

the extraordinary difficulties that are faced because of the treatment regimens that must be followed. They will also, though, attest

to the wonderful spirit that allows them to continue to pursue

things that children and adults like to do; children playing sports,

acting in theaters, going to sleepovers with friends; adults, for all

of the joys of family and other joys that we have in this life of ours.

I thank you all for coming forward today.

4

The payoff of the research which Senator Collins made reference

to is a truly human one that touches, I think, all of us, either in

our families or in some loved one that we know or in some friend

that we have. In my case, my particular case, I lost my best friend

from law school, to diabetes. Research that is done for type 1, that

we are going to focus on today, can also help the even larger number of people who have type 2 diabetes. One of the most important

aspects of diabetes research is embryonic stem cell research, and

we are going to hear today from leading scientists, like Dr. Hugh

Auchincloss from the Harvard Medical School, that embryonic stem

cell research holds the promise of a cure, not only for diabetes, but

for a range of diseases. Almost 80 Nobel Laureates recently wrote

to President Bush, urging that his administration allow embryonic

stem cell research to be federally funded.

I hope that he will listen to those scientists. I hope that he will

listen to colleagues of ours, such as Senator Orrin Hatch, and a

former colleague of ours, former Senator Connie Mack, who, while

taking a very different position than I do on the issue of whether

abortion should be legal, nonetheless strongly support stem cell research, as I do. I hope that this administration will take to heart

the eloquence of those statements that have now been given by

those pro-life supporters who are staunch in their positions relative

to abortion, but who also feel it is simply inhumane for us to deny

the benefits of stem cell research to those who can be saved by that

research.

So I want to again thank JDRF for assembling the panel of witnesses, and again thank Senator Collins for the initiative in scheduling this hearing, and I will now turn to Senator Akaka for an

opening statement.

Thank you.

[Applause.]

OPENING STATEMENT OF SENATOR AKAKA

Senator AKAKA. Thank you very much, Senator Levin and Senator Collins. It is also good to have Senator Carnahan here with

us this morning. I want you to know that I am very pleased to be

here to welcome our distinguished guests. I also extend my aloha

to all the young people in the audience, especially Ricky and

Emalia from Hawaii, who are seated in front of me. I commend the

Juvenile Diabetes Research Foundation International Children’s

Congress for its advocacy on behalf of children with juvenile diabetes.

The foundation will be pleased to know that I have received over

250 letters from constituents in my home State of Hawaii, urging

me to support increased funding for diabetes research. To you and

my constituents, I will continue to work to ensure adequate funding for research on diabetes. To my good friend, the distinguished

Senator from Maine, I thank you for holding today’s hearing, and

understand you and Senator Breaux are co-chairs of the Children’s

Congress. I also know that you were one of the driving forces behind the issuance of the Diabetes Awareness Stamp that was unveiled this March by the Postal Service.

Mr. Chairman, I regret that I am unable to stay. However, I

want to assure Emalia and Ricky that we will have an opportunity

5

to sit down and talk later today in my office. Again, I applaud the

efforts of the Foundation and its supporters for the outstanding

work they are doing to raise awareness of a disease that afflicts

120 million people worldwide. I do not have to tell our witnesses

or this audience that insulin is only life-support, not a cure, and

we need to do all we can to help those who are afflicted.

Again, thank you very much, Mr. Chairman and Senator Collins.

Senator LEVIN. Thank you very much, Senator Akaka, for your

statement.

Senator Carnahan.

OPENING STATEMENT OF SENATOR CARNAHAN

Senator CARNAHAN. Thank you, Mr. Chairman. I want to begin

by recognizing the leadership of Senator Collins in calling this

hearing today. Today’s hearing holds particular meaning for me,

because my father suffered from diabetes. My family and I cared

for my father in our home for the last 8 years of his life, and as

each of the witnesses knows well, this disease does not just impact

the individual, but the entire family. I learned to measure and administer his insulin dosage. I learned to recognize the onset of an

insulin reaction, and I learned to prepare healthy, well-balanced

meals. In fact, Grandpa’s diet and exercise routines inspired the

family to a healthier lifestyle, and you might be interested to know

that he lived to be 86.

As a society, we must do more to deal with this disease, particularly when it affects children. I applaud the Juvenile Diabetes Research Foundation International for organizing the Children’s Congress and bringing the national spotlight to the important need for

research funding. Two exceptional children are representing Missouri at the Children’s Congress, Patrick Fisher and Stephanie Patton, both of whom are from St. Louis. Patrick is a 13-year-old and

has been dealing with diabetes since the age of 21⁄2. Stephanie is

a 6-year-old who was diagnosed with diabetes on her fifth birthday.

In the letters that they sent to me, both children described what

it means to be a child living with diabetes. They have tremendous

courage. Besides from the everyday pressures all kids face, children

like Patrick and Stephanie must adhere to a different eating schedule. Pricked fingers and trips to the doctor’s office are as much a

part of their lives as Little League or visits to the zoo. Stephanie

writes, ‘‘If there was a cure for diabetes, we could eat birthday cake

at parties, sleep over at a friend’s house and not be scared of low

blood sugar.’’

Patrick describes how he has to stop and think about, and plan

things everybody else takes for granted—school, sports, amusement

parks, parties, meals, sleepovers, and vacations. The path to a cure

is through research, and I strongly support keeping the National

Institutes of Health on track, by doubling its funding over 5 years.

I would like to recognize each of the witnesses on our first panel,

Mary Tyler Moore, Kevin Kline, Jonathan Lipnicki, and James

Lovell, for the leadership and dedication that they have shown for

finding a cure for this disease. Kevin Kline is a native Missourian,

and I thank him especially for being here.

I look forward to learning from all of these witnesses today about

what the Federal Government is doing to meet its commitment to

6

1The prepared statement of Ms. Moore appears in the Appendix on page 53.

diabetes research, and what more can be done. Thank you very

much.

[Applause.]

Senator LEVIN. Our first panel needs no introduction. They are

all known and loved by millions of Americans. Today, they will be

talking about something different than movie roles or what it is

like to be a celebrity. They are going to tell us about their personal

experiences, either living with juvenile diabetes or helping family

members or friends who have diabetes. We are going to hear their

stories and we are going to learn more about what it is like to live

with this disease, and what more we can do in terms of research

and trying to finally win a victory over it.

First, the Subcommittee is going to hear from Mary Tyler Moore,

one of America’s favorite stars, who lives with juvenile diabetes

and has for the past 30 years. Next, we will hear from Kevin Kline,

who is sitting with his 13-year-old friend, Katie Zucker, who lives

with diabetes. Then we will hear from Jonathan Lipnicki, who is

10 years old, accompanied by his friend, Tessa Wick, 10 years old,

and has juvenile diabetes.

Finally, we are going to hear from Captain James Lovell, who

will talk about his grown son who has juvenile diabetes. We are not

going to be using a timing system today, as we usually do, because

our witnesses all know about our time constraints. Usually, these

high-tech lights go on to give you a little warning, but they will be

quiet today. We just heard that it is important that we do more,

so our first witness, Mary Tyler Moore.

TESTIMONY OF MARY TYLER MOORE,1 INTERNATIONAL

CHAIRMAN, JUVENILE DIABETES RESEARCH FOUNDATION,

ACTRESS, LIVING WITH DIABETES, NEW YORK, NEW YORK

Ms. MOORE. Chairman Levin, Senator Collins, and Subcommittee

Members. Two years ago, I joined the 100-child delegates to JDRF’s

first Children’s Congress, to ask you and all your colleagues to

‘‘promise to remember them’’ and everyone, like me, with juvenile

diabetes, when making decisions that would impact funding for diabetes research. I was very proud of them, then, for finding the

courage to reflect on their fears, share their hope, and reach out

to you, their representatives.

Once again, it is my privilege to Chair the Juvenile Diabetes Research Foundation Children’s Congress, and this year we brought

twice as many delegates—200 children with type 1 diabetes—because we have twice as much to do. First, we must thank you for

keeping your promise. Second, we must challenge you, just as each

of us here has challenged ourselves, to do more.

First things first, thank you. We are grateful that you remembered us, last year, by approving legislation that provides a historic

increase for juvenile diabetes research funding at NIH, 240 million

new dollars over 3 years. We are grateful, too, that Congress and

the Bush Administration, even with other program growth being

constrained, have recommitted themselves to the bipartisan effort

to double funding for NIH, an action that surely will result in more

research to find a cure for diabetes and its complications. So, again,

7

for all of you that have done so much to keep your promise these

past 2 years, we thank you.

[Applause.]

Of course, you have not been alone in the important efforts you

have made. We never ask others to do something we have not

asked ourselves to do, first. So, we have been and will remain your

partners in this purpose. As evidence of our dedication to finding

a cure, since the last Children’s Congress, JDRF has more than doubled our own funding of diabetes research, from $55 million in

1999 to $120 million in 2001. We, too, made a promise to ourselves,

these children, our loved ones. The stakes for us are very real and

very personal.

Many of you know that I have had juvenile diabetes for more

than 30 years, and like each of these children, I struggle, everyday,

to do what happens naturally for nondiabetics. So, to most of you,

metabolic balance is as automatic as breathing. To people with juvenile diabetes, like me, it requires 24–7, 365-vigilance, constant

factoring and adjusting, frequent finger sticks every day to check

blood sugar levels, and multiple daily insulin injections, just to stay

alive.

Even with the greatest of care and closest of personal scrutiny,

I find that I am often unable to achieve good balance with my sugars. They are dangerously low or frighteningly high; yes, dangerous

and frightening, because, frankly, serious lows can lead to seizures,

coma and death, and highs over the long-term result in life-limiting

and life-shortening complications like blindness, amputation, kidney failure, heart disease, and stroke. Diabetes is an all too personal time bomb which can go off today, tomorrow, next year, or

10 years from now, a time bomb affecting millions, like me and the

children here today.

This reality is made all too clear by the recent sudden death of

a young friend, Danielle Alberti. Danielle was 31. She was an aspiring artist and the daughter of one of JDRF’s most active and

generous volunteer leaders. Though rapidly losing her vision due to

diabetic retinopathy, Danielle stuck to her dream of being a painter, and was pursuing her career when she recently, like too many

young adults with type 1 diabetes, developed kidney failure. People

with diabetes-related kidney failure do not do well on dialysis, so

kidney transplant was her only real option. With her doctor’s guidance, she and her mother decided to return home together to Australia, where her chances for a transplant were greater. But

Danielle did not survive the flight. She died at 30,000 feet, seeking

comfort in her mother’s arms. Her last words were, ‘‘Mom, hold

me.’’

Chairman Levin, Senator Collins, and Subcommittee Members,

we are here again because of our children, our loved ones with diabetes, look to us for comfort, for a way to stop their suffering, and

we are determined to find it.

The good news today is that since the last Children’s Congress,

we have achieved a critical research milestone. In May 2000, at the

University of Alberta in Edmonton, Canada, and subsequently elsewhere, researchers have successfully transplanted insulin-producing islet cells into men and women with juvenile diabetes, restoring normal blood sugars. This reproducible clinical success is

8

the first significant proof of a scientific principle that JDRF has

long led in promoting: That insulin-producing cells can be transplanted into patients with even the most severe cases of juvenile

diabetes, and normal blood sugars achieved without insulin injections. Quite simply, these findings are the first real clinical evidence that a cure is within our grasp.

There is a ‘‘however’’ to this positive news: As encouraging as

these results are, and they are, the cure will remain out of reach

unless we can overcome two very important obstacles:

One, this first group of islet-transplant patients must take potentially toxic immuno-suppressive drugs for the rest of their lives,

and this makes islet transplantation, in its current stage of development, too risky for children and all but those whose lives are immediately threatened.

The other major obstacle is the lack of supply. The only current

source for islets suitable for transplant are cadaver pancreases, and

in the United States less than 2,000 such pancreases become available for transplantation each year. If tomorrow we had the perfect

solution to immune tolerance, we would still only be able to offer

islet transplantation to a tiny fraction of the millions of people with

diabetes who might benefit. There is hope, though, that an alternative, inexhaustible supply of islet cells can be created. Hope that

very much depends on actions you, your colleagues, and the administration choose to take. The hope I refer to resides in the potential

of embryonic stem cells to be coaxed to develop into any cell in the

body, including islet cells. This would solve the islet cell supply

problem. Of course, the promise of stem cell research is not exclusive to patients with diabetes. Stem cell research could help as

many as 100 million Americans who suffer from a variety of chronic illnesses, including Parkinson’s disease, Alzheimer’s, heart failure and cancer. So I am here today to urge each of you, your colleagues and the Bush Administration, to support Federal funding

of stem cell research. This can be done immediately, by allowing

NIH to act within its ethical guidelines it approved in August 2000.

I understand the support for this research raises concern among

people of goodwill, each trying to do what is right based on their

very personal religious and moral beliefs. I have not shied away

from this personal soul-searching, nor has JDRF in its policy-making, nor should anyone. I have found comfort in my heartfelt view

that embryonic stem cell research is truly life-affirming. It is a direct outcome of a young family making a choice, without coercion

or compensation, to donate a fertilized egg, not used for in vitro fertilization, for research. An egg that otherwise would have been discarded. Because of the great potential of stem cell research, donating unused, fertilized eggs is much like the life-giving choice a

mother, whose child has died tragically in an automobile accident,

makes when donating his organs to save another mother’s child. It

is the true pinnacle of charity to give life to another. Federal support for stem cell research is an extension of this affirmation of life,

and is the best way to insure it is undertaken with the highest of

ethical standards.

Chairman Levin, Senator Collins, and Subcommittee Members,

to borrow a phrase, ‘‘diabetes ain’t bean bag.’’ My 30-plus years of

diabetes has led to visual impairment, painful neuropathy, the

9

1The prepared statement of Mr. Kline appears in the Appendix on page 56.

threat of limb loss from poorly-healing foot wounds, and peripheral

vascular disease, which has started to limit how far I can walk. I

push through all of this, just as each of the children here, today,

push through the burdens imposed by diabetes, because we are a

determined lot. None of us is willing to be deterred. We all share

the firm conviction that, through our efforts, and the help of

friends—like the Members of this Subcommittee—we will find a

way to stop the suffering, the pain, and restore balance.

Please listen to the stories of the children here today and promise to remember all of us who suffer from juvenile diabetes, when

you make decisions that will impact research. The cure is truly

within our grasp. Together, we will find it. Thank you.

Senator LEVIN. Thank you so much, Ms. Moore.

Kevin Kline is a wonderful actor who has appeared in so many

movies, including one in which he played a President. It was a

movie called ‘‘Dave,’’ and we do not often have a President appearing before a Subcommittee. So, Mr. President, it is your turn.

TESTIMONY OF KEVIN KLINE,1 BOARD MEMBER, JUVENILE DIABETES RESEARCH FOUNDATION, ACTOR, NEW YORK, NEW

YORK, ACCOMPANIED BY KATIE ZUCKER, AGE 13

Mr. KLINE. I think I will defer to my friend, Katie Zucker, who

wants to say a couple of words by way of introduction, I believe.

Ms. ZUCKER. Hi. I am Katie Zucker. I am 13 years old and I have

juvenile diabetes. I am proud to be here to meet all of you, along

with my friend Kevin Kline, who is also a good friend to all of us

with diabetes. Kevin has been a great JDRF volunteer, and today

he is here to ask that you promise to remember us.

Mr. KLINE. Thank you, Katie.

Mr. Chairman and Members of the Subcommittee, thank you for

this opportunity to speak on behalf of the Juvenile Diabetes Research Foundation and for all children with juvenile diabetes. I am

honored to share the floor with these 200 extraordinary young people. Each year, approximately 30,000 Americans are diagnosed

with juvenile diabetes. Over 13,000 of them are children, stricken

at random, whether there is a genetic predisposition or not. No

child is immune. That is 35 children every day, more than one

every hour, stricken suddenly, made insulin-dependent for life, and

suddenly facing the constant threat of this disease’s devastating

complications.

In 1999, I joined the Board of Directors of the New York chapter

of JDRF, and in July 2000, I was elected to the position of Vice

President of Public Outreach and Education. Through my work

with JDRF, I have met countless children who have juvenile diabetes and have witnessed firsthand the devastating impact of this

disease on them and their families. Children like my friend Katie

Zucker. Katie and others you will hear from today are of an age

where they can speak eloquently about their experience with diabetes. So I would just like to, if I may, say a few words on behalf of

the children who are too young to comprehend fully their medical

situation, much less be articulate about their feelings on this subject, and perhaps in the process I can also set right some popular

10

1The prepared statement of Mr. Lipnicki appears in the Appendix on page 59.

misconceptions about how diabetes is managed with young children.

Diabetes can strike at any age, from infancy on—not everyone

knows this. For these young children, whose parents become their

doctors and nurses, a typical day is as follows: They will have their

fingers pricked as many as 10 or 15 times throughout the day, to

measure their fluctuating blood glucose levels. Then there are the

injections of insulin; a shot in the morning, another at lunch, another one possibly at afternoon snack, then definitely another one

at dinner, sometimes at evening snack, again at bedtime, and, if

necessary, another in the middle of the night.

Each meal and snack involves exact measurements of food, based

on grams of carbohydrates, fat and protein, calculated according to

the amount and type of physical activity which the parent anticipates the child to be performing. Throughout these days and

nights, there is an unwavering sense of dread which settles over

the parents, who fear that in spite of their vigilance, their child

could still have a low blood sugar, which could lead to convulsions

or diabetic coma, in the worst case, or that high blood sugar levels

could be damaging their child’s liver, kidneys, or causing other

complications, precipitating amputation, stroke, blindness, and

heart attack. As Senator Collins pointed out earlier, there are no

days off with diabetes.

Throughout our history, the marvelous men and women of medical science have discovered cures for what had seemed to be incurable diseases. Today, finally, the cure for diabetes is within their

reach. It is within our reach. I urge you to do all that you can to

speed along the necessary research for this cure, so that these

brave, all-too-patient, heroic children can open their arms and embrace the long, healthy life which they deserve. Thank you.

Senator LEVIN. Jonathan Lipnicki, please go ahead. We know

you as an actor, and now you are going to be a witness in front

of our Subcommittee, and so it is your turn.

TESTIMONY OF JONATHAN LIPNICKI,1 ACTOR, FRIEND OF A

CHILD WITH DIABETES, NEW YORK, NEW YORK, ACCOMPANIED BY TESSA WICK, AGE 10

Mr. LIPNICKI. Mr. Chairman and Members of the Subcommittee,

thank you for letting me join my friend, Tessa Wick, and all 200

of the Children’s Congress delegates today to talk about juvenile diabetes. Tessa and I have been friends since we met on the set of

my movie, ‘‘Stuart Little,’’ a few years ago. Tessa and I are both

10 years old, and in a lot of ways we are very much alike. We both

go to school. We love movies, and like to play sports and games.

We have good friends and loving families. We both have big dreams

for our futures, but Tessa happens to be different from me in one

important way.

In January 1999, a doctor told her she had juvenile diabetes and

a lot of things in her life would have to change, just so she could

stay alive. Every day, she would have to prick her finger four or

five times to check her blood glucose levels. Every day, she would

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11

nosed with diabetes about 21⁄2 years ago, so that means she has already had to take more than 2,738 insulin shots, and she would

prick her finger to check her sugar level about 4,563 times, and

even that does not make her healthy. If Tessa’s blood sugar goes

too low, she knows she has to take sugar right away, because if she

waits even a few minutes too long, she could have a seizure or

maybe even go into a coma, and she knows that high blood sugar

over a long period of time can damage the organs inside her body.

For 21⁄2 years, Tessa has not been able to have a normal childhood.

It has been weighed down by all the burdens of juvenile diabetes.

Everywhere she goes, she has to bring a blood sugar testing kit

with her, and also shots and sugar, just in case she goes low. Like

all kids of our age, Tessa wants to be independent and go to

sleepovers and on class trips without her parents, but both Tessa

and her parents worry when she is away from home. When Tessa

goes to sleep at night, she is afraid her blood sugar could drop too

low in her sleep, and she will have a seizure. Many nights, she

asks her mom to wake her up at 2 a.m. to check her blood sugar,

just in case.

When I am with Tessa, sometimes I forget she has juvenile diabetes. It is easy to do. She looks and acts like any other kid my

age, but she can never forget that she has juvenile diabetes. If she

does, she would be risking her life. I am here today because I do

not want Tessa or any of the 200 kids in this room to live a life

with diabetes for the rest of their lives like this. It is not fair. They

do not have the same chance as other kids to live long, healthy

lives and achieve all their dreams.

Recently, I was happy to have an opportunity to meet President

Bush. I was so glad to hear that he and Mrs. Bush are the honorary co-chairs of the Children’s Congress this year. I hope they

will also promise to remember all the children with juvenile diabetes when they make decisions that will affect research. I know that

I am lucky I do not have this terrible disease, but I also know that

anyone can get juvenile diabetes, even me, or your kids or

grandkids.

Yesterday, researchers told me that, with enough funding, a cure

for juvenile diabetes is possible. Won’t you please help Tessa and

the children with juvenile diabetes? Please do everything you can

to help find a cure.

I would like to ask my friend Tessa to conclude this testimony

with a few of her words.

Ms. WICK. Hi. A few years ago, when I first got diabetes, I was

embarrassed and wanted to keep it a secret. But soon, I realized

that the only way to survive this disease is to be part of a cure.

So my sisters and I tried to raise money thinking that we would

send it to JDRF and the scientists would find a cure. But then I

read that some politicians were trying to stop embryonic stem cell

research, the kind of research that is our best chance for a cure.

So please ask yourself: Is the life of one child with diabetes, like

me or any of the other kids here, less important than a cell the size

of a dot? We are scared because we are in trouble. It is hard to

have diabetes, and we are scared to face the future. Won’t you

please help us?

12

1The prepared statement of Captain Lovell appears in the Appendix on page 61.

Thank you, Senator Collins and Senator Hatch, who are already

trying so hard to help. So please promise to remember us.

[Applause.]

Senator LEVIN. Jim Lovell is a former astronaut. He was the

commander of Apollo 13, and the kind of bravery, kids, that this

astronaut showed on that mission is a different kind of bravery

from the bravery that you show every day, but it is something that

you will read about in the history books, if you have not already

done so. Jim Lovell also was famous because he was in a movie

that most of us saw, and a guy named Tom Hanks played the role

of Jim Lovell, and I am not sure who is more famous, but we have

the real McCoy here today anyway in Jim Lovell.

Jim, welcome.

TESTIMONY OF CAPTAIN JAMES LOVELL,1 FORMER NASA

ASTRONAUT, SON WITH DIABETES, LAKE FOREST, ILLINOIS

Captain LOVELL. Thank you, Chairman Levin and Members of

the Subcommittee for the opportunity to speak to you today. Unfortunately, Tom Hanks could not be here. [Laughter.]

In my professional life, though, I am president of Lovell Communications, a business devoted to disseminating information about

the United States space program, and, as the Senator mentioned,

you probably know me as a former member of the space program

and commander of the Apollo 13 mission, and Chairman Levin also

mentioned was the fact that I am the father of a grown son, Jeff,

with juvenile diabetes.

When my son called, at the age of 26, to tell me that he had been

diagnosed with juvenile diabetes, he began by saying, ‘‘Houston, we

have a problem.’’ At the time, I thought it ironic that he would

draw a parallel between my career at NASA, especially the Apollo

13 mission, and his diagnoses with diabetes. My training at NASA

gave me the confidence in my ability to overcome any obstacles

that stood before my goals. When an explosion depleted our oxygen

supply, forcing us to abort our voyage to the Moon and improvise

a plan to get home, I never doubted that we would be successful,

despite the seeming impossibility of our task.

With the combined ingenuity, the teamwork and the commitment

of my crew and the team at Mission Control, we were able to successfully convert our lunar module into an effective lifeboat, which

allowed us to conserve enough electrical power and water to get us

safely home. But when my son was diagnosed with juvenile diabetes, the skills that I had developed at NASA suddenly seemed

meaningless. I felt that I had nothing to fight this disease that was

threatening my son’s life. I was well aware that insulin was not a

cure for diabetes, and that even if my son did everything in his

power to maintain tight control of his blood glucose levels, he could

still be faced with the devastating complications of this disease.

However, after joining the Juvenile Diabetes Research Foundation, I became convinced that we do have the ability to find a cure

for diabetes, and that the skills that were developed at NASA, such

as teamwork and ingenuity and commitment, will help us achieve

this goal. The mission of the Juvenile Diabetes Research FoundaVerDate 11-MAY-2000 10:50 Sep 21, 2001 Jkt 000000 PO 00000 Frm 00016 Fmt 6633 Sfmt 6633 74734.TXT SAFFAIRS PsN: SAFFAIRS
13

tion is constant, to find a cure for diabetes and its complications

through research and support of that research. With the help of the

Federal Government, private individuals willing to give their time

and resources to the cause, and researchers around the world who

will their careers to juvenile diabetes research, we can bring a cure

in our lifetime for this disease.

I now serve as a member of JDRF’s International Board of Directors, and I am pleased to report that this year, JDRF will spend

over $150 million on juvenile diabetes research, an increase of $30

million from the year 2000, and up to $95 million from 1999. However, I am well aware that JDRF’s budget from private donations

cannot compare to the vast resources of the Federal Government.

I am aware of the recent increase in juvenile diabetes research

funding and the initiative to double the budget of NIH, and I really

want to thank you for your commitment to this effort.

However, we must continue to increase funding for juvenile diabetes research in order to capitalize on the opportunities that have

recently been presented by the breakthrough trial in Edmonton,

Canada, that Mary had mentioned. The justification for increases

in diabetes research has been provided by the report of the Congressionally-mandated Diabetes Research Working Group, which

was released in 1999. This report, drafted by a national panel of

diabetes research experts, puts forward an accelerated and expanded diabetes research program at NIH.

The DRWG report identifies numerous major opportunities not

being pursued because of the lack of funds and focus. They include

potential high-impact initiatives in the genetics of diabetes, the biology of the beta cell, the treatment of diabetes-related eye disease,

kidney disease, nerve disease, heart disease, and the development

of a vaccine for the prevention of type 1 diabetes. All of these initiatives were identified as high priorities by the DRWG and are of

particular importance to the children with type 1 diabetes.

The panel recommended a Fiscal Year 2000 appropriation of

$827 million for diabetes research, and a Fiscal Year 2001 appropriation of $1.07 billion, and a fiscal year 2002 appropriation of

$1.3 billion. Despite the recent increases in medical research funding and juvenile diabetes research funding, diabetic research at the

National Institutes of Health only came to $690 million in fiscal

year 2001, $384 million short of the recommended funding level. It

is evident just by looking at the children here today that the personal impact of juvenile diabetes is devastating.

The economic impact of this disease on our country is just as

staggering. Diabetes accounts for more than $105 billion of health

care cost annually in the United States, and approximately 25 percent of all Medicare expenditures. The numbers speak for themselves. Diabetes research is a worthwhile investment. Mr. Chairman, I know that our great Nation can solve any problem if it puts

its mind to it. I ask you to promise to remember these children by

supporting a cure for diabetes research.

Look at the children before you. I think you will agree that failure is not an option. Thank you.

Senator LEVIN. Thank you very much.

Senator Collins.

14

1The letter to President Bush, from Senator Collins, dated June 11, 2001, appears in the Appendix on page 38. 2The letter to Tommy G. Thompson, from Senator Collins and Senator Breaux, dated February 21, 2001, appears in the Appendix on page 39. 3The letter from Tommy G. Thompson, with attachments, to Senator Collins, dated May 24,

2001, appears in the Appendix on page 40.

Senator COLLINS. Thank you very much, Mr. Chairman. I want

to thank our witnesses for their heartfelt and persuasive testimony.

Each of you helped us understand the human dimension of juvenile

diabetes. Three of you, at least—Jonathan, Tessa and Ms. Moore— mentioned the importance of embryonic stem cell research, and I

just want you to know that I wholeheartedly agree with your comments, and on June 11, 2001,1 I wrote to the President to urge him

to make the right decision in this area, and I would ask that my

letter be included in the record.

Senator COLLINS. Another issue, Mr. Chairman—we have had a

lot of success in increasing research going to diabetes in the last

few years, but I was concerned to make sure that the additional

dollars supplement, rather than supplant, other diabetes research

resources. JDRF has done a wonderful job of private fund-raising,

but the money that we provide at the Federal level should be in

addition to that. It should not replace that in any way, or it should

make sure that it supplements that.

So I wrote to the Secretary of HHS, Tommy Thompson,2 who also

is a tremendous advocate for families with diabetes, to ask him

about that very issue, and he has written me back a letter assuring

me that the additional resources will be used to fund new and ongoing projects,3 that they will not be used to displace dollars already appropriated. So I would ask that be put in the record, as

well.

Senator LEVIN. It will be.

Senator COLLINS. I just have one question for Ms. Moore, and

that is you have lived with juvenile diabetes, as you mentioned, for

30 years. You have had a very demanding career. You have talked

about how you have pushed through the medical setbacks that you

have had to deal with. Do you have any advice for the children who

are here today as they cope with such a strict regime in their attempt to remain healthy and the restrictions on some of their activities? Do you have any advice for them?

Ms. MOORE. When I was diagnosed with diabetes, I was an adult.

So my formative years had gone into the past tense, but I think

you youngsters, because of the awareness that you have had to develop, will become stronger, better human beings, because you have

been there. You have been there when it is tough and when you

think you want to just give up and run away, close your eyes, get

under the covers. You know you cannot do that, and it is one of

the best lessons you can ever learn in life. So just remember, each

one of you, you are champions and you are always going to be

champs.

Senator COLLINS. Thank you, Mr. Chairman.

Senator LEVIN. Let me thank the panel for coming forward. Your

testimony is going to be very helpful in a number of ways, hopefully in terms of additional funding, which we are going to push

very hard for, in terms of stem cell research, which we hope the

President will reach the right conclusion, which will advance the

15

cause of humanity. We have got some wonderful support coming

forward for stem cell research, and we hope that that is persuasive

to the President, that your being here and your testimony today

will also help in that cause, as well.

Tessa, you have got a wonderful friend in Jonathan. We hope

that all of us can be as good a friend to diabetes research as Jonathan has been to you. We thank each and every one of you for your

willingness to come forward, to share your stories and to share

your thoughts with us, and what we will do now is move to our second panel.

We will have a vote in about half-an-hour, and so what we will

do is we will ask our second panel to try to get all their testimony

in during that period, and then we will take a recess at that time.

I have a hunch that some of us here may need a recess even before

that time, and if that is true, just feel free to get up and leave in

the middle. We are very informal here.

Ms. Moore, you indicated we have twice the size of turnout here

as we did in the first meeting of this type. If we keep going at this

rate, we are going to have to double the size of this room for the

next Congress, but it is because of your presence. Thank you all.

[Applause.]

You are all excused, and we will move to our second panel. We

will call now on Dr. Allen Spiegel, Dr. Hugh Auchincloss, James

Robbins, and Greg Brenneman. If they would come forward, our

second panel. This will be the third-inning stretch. We will have a

sixth-inning stretch in about half-an-hour, where we will really

take a 10-minute recess. Let us proceed now to our second panel.

This panel consists of two scientific experts and two fathers who

have been touched by diabetes. First, the Subcommittee will hear

from Dr. Allen Spiegel, who is the Director of the National Institute of Diabetes and Digestive and Kidney Diseases at the National

Institutes of Health; and then, after Dr. Spiegel, we will hear from

Dr. Hugh Auchincloss, who is a professor of surgery at Massachusetts General Hospital and the Harvard Medical School. We will

then hear testimony from James Robbins, who is the President and

CEO of Cox Communications and a father of a daughter who has

diabetes. Finally, we will hear from Greg Brenneman, the former

Chief Operating Officer of Continental Airlines and the father of a

son who has diabetes.

So we will start with you, Dr. Spiegel.

Again, we are not going to use these lights, but we will need you

to keep your statements as short as possible, less than 10 minutes

in any event, please, because we now have a double problem here.

Senator Collins reminds me we may have two votes at around

11:30, which means that our recess will have to be a little longer

than 10 minutes. We will try to hold it to 15 minutes, but if you

could keep those statements short, we will make all your statements, if longer than that, part of the record.

Dr. Spiegel.

16

1The prepared statement of Dr. Spiegel with attachments appears in the Appendix on page

63.2The chart referred to appears in the Appendix on page 70.

3The chart referred to appears in the Appendix on page 71.

TESTIMONY OF ALLEN M. SPIEGEL,1 M.D., DIRECTOR,

NATIONAL INSTITUTE OF DIABETES AND DIGESTIVE AND

KIDNEY DISEASES, NATIONAL INSTITUTES OF HEALTH,

BETHESDA, MARYLAND

Dr. SPIEGEL. Chairman Levin and Senator Collins, as Director of

the National Institute of Diabetes and Digestive and Kidney Diseases, NIDDK, I am grateful for the opportunity to testify at this

hearing on juvenile diabetes. Having spoken with many of the children yesterday at a town hall meeting held by the Juvenile Diabetes Research Foundation, I know that the Subcommittee will be

hearing important testimony today directly from the kids whose

lives are affected daily by diabetes.

For this reason, I would like to outline just briefly what we have

learned about type 1 diabetes, the research goals we hope to pursue, and an example of the progress we are making. More complete

details are in the written testimony I have provided to the Subcommittee. Approximately one million Americans have type 1 diabetes, which we now know is a slowly progressive, autoimmune illness. What do I mean by autoimmune? I mean that the body’s own

immune defense system attacks and destroys the beta cells in the

pancreatic islets that make insulin, the hormone lacking in type 1

diabetes.

As shown on the first chart,2 we are all born with a normal number of islets, but in some of us there is a genetic susceptibility to

development of type 1 diabetes. In such individuals, some inciting

event or trigger starts the immune system’s attack on the islets,

beginning a slow, progressive downslope and loss of the beta cells

that make insulin. When this loss reaches a low enough point, diabetes, with abnormally high blood sugars, develops. It may appear

to parents that their child has abruptly developed the disease, but,

in fact, the process of islet loss has often been progressing for

years.

Even after onset of diabetes, there are some islets left, but further loss can lead to brittle diabetes, a state in which the blood

sugar is even more difficult to manage, with wide swings from high

to low. We now know that the high blood sugar itself leads to the

complications of diabetes affecting the kidneys, the eyes, the

nerves, and the heart. With broad consultation with scientists, patients and their families, and organizations such as the JDRF, we

have framed a strategic plan with six goals, as indicated on the

second chart,3 to be pursued in diabetes research.

Our first goal is to identify the genetic and environmental causes

of type 1 diabetes, so that we can identify those at high risk of developing the disease and so that we can find molecular and environmental targets for prevention.

Second, we seek to prevent or, in the case of recent onset, even

reverse type 1 diabetes. Basic research in immunology is leading to

new insights into prevention. We hope to test new, innovative

measures in a nationwide, type 1 diabetes clinical trial network, or

TrialNet.

17

1The chart referred to appears in the Appendix on page 72.

Another important goal is to prevent or reduce hypoglycemia, the

low blood sugar that complicates attempts to achieve tight blood

sugar control.

Likewise, we want to prevent or reduce the complications by developing better ways to identify those at risk and developing better

molecular targets for drug therapies.

To attract new talent to type 1 diabetes research, it is critical

that we ensure that we have sufficient numbers of researchers to

bring the benefits of the Human Genome Project and other technological developments to patients.

Last, and perhaps most important, is to develop a real cure, such

as cell replacement therapy, because insulin is certainly not a cure.

Let me elaborate on cell therapy. After years of frustration and

failure, researchers in Edmonton, Canada, building on years of research, have developed methods for harvesting islets and transplanting them into patients with a drug treatment protocol that

has enabled the majority to become insulin-independent. NIH and

JDRF are supporting expanded trials of islet transplantation to

replicate and build upon the Edmonton advance.

Let me describe an example from the Transplantation and

Autoimmunity Branch NIDDK opened in 1999 at the National Institutes of Health Clinical Center. The next chart 1 shows results

from the first of five patients in which Dr. David Harlan has performed islet transplants. The patient is a 57-year-old woman who

had had type 1 diabetes for over 50 years, a brittle diabetic. Note

her wildly abnormal, shown in white, and fasting blood sugars, and

her total insulin dose daily, shown in black. Notice that, after the

first islet transplant, the insulin requirement is already reduced.

After the second transplant, she has become insulin-free, insulinindependent, and note the normalization of her blood sugars.

Since she has been off insulin for only 4 months at this point,

it is too early to say she is cured, but the results are extremely encouraging. Final poster board shows schematically the islet transplant procedure. Islets, which comprise only 5 percent of the normal pancreas, are harvested from the donor cadaveric pancreas and

infused into a vein directly into the liver, where they can produce

and secrete insulin to normalize the blood sugar. Up until now, this

experimental procedure has been performed only in adults with

type 1 diabetes. When will we be able to do this in children suffering from the disease, such as the ones in this room?

There are two major hurdles to overcome. Currently, patients receiving islet transplants must receive medication daily, perhaps for

the rest of their lives, to block the transplant rejection. We need

to develop ways to block rejection and the autoimmunity that

caused the diabetes in the first place—ways that are safe and effective for use in children. We also need to develop alternative inlet

supplies, since the few thousand donor pancreases available each

year will never be sufficient for the hundreds of thousands of

Americans with type 1 diabetes. We at NIH are investing heavily

in research to overcome both of these barriers. I can elaborate on

this in the question period, and I believe Dr. Auchincloss will

elaborate on these points in his testimony.

18

1The prepared statement of Dr. Auchincloss appears in the Appendix on page 74.

On behalf of the NIDDK and the other institutes and centers of

the National Institutes of Health, I hope I have been able to convey

to this Subcommittee and to the children in the room today that

we have a vigorous research agenda to conquer diabetes and its

complications. We are eager to pursue the many scientific opportunities made possible by the biotechnology revolution. We are inspired by the dedicated efforts of the patients and their families,

by organizations such as the JDRF, and by the Diabetes Caucus,

which you, Senator Collins, co-chair. We are grateful for congressional interest and support, which has enabled us to undertake

many of the research initiatives I have described to you.

It is a privilege for me to be able to share the vigor and promise

of research in diabetes with this Subcommittee and with the children and parents affected by diabetes, who are always on our

minds and in our hearts. Thank you for your attention.

Senator LEVIN. Thank you, Dr. Spiegel.

Dr. Auchincloss.

TESTIMONY OF HUGH AUCHINCLOSS, JR.,1 M.D., PROFESSOR

OF SURGERY, MASSACHUSETTS GENERAL HOSPITAL AND

HARVARD MEDICAL SCHOOL, BOSTON, MASSACHUSETTS

Dr. AUCHINCLOSS. Thank you, Chairman Levin and Senator Collins. I appreciate the opportunity to speak before you. My name is

Hugh Auchincloss. I am a professor of surgery and a transplant

surgeon at Harvard. I am also the director of the Juvenile Diabetes

Research Foundation’s Center for Islet Transplantation at Harvard

Medical School, and finally, for the last 3 years, I have served as

the Chairman of the Medical Science Review Committee of the Juvenile Diabetes Research Foundation. That sounds like a lot of titles, but I have to tell you I feel very insignificant compared to the

very eloquent witnesses you have already heard from and some of

the people that you are going to hear from shortly.

Nonetheless, I do want to speak today about the extraordinary

advances that have occurred recently in the effort to cure type 1

diabetes. I also want to talk about the very significant problems

that remain to be overcome, and about the equally significant opportunities that are available today to solve those problems. First,

let me talk about what has been accomplished. Members of this

Subcommittee have already heard about the success of the Edmonton protocol for islet cell transplantation. This protocol uses a combination of immunosuppressive medicines, islet cell isolation procedures and techniques for their transportation that has led to the

elimination of insulin therapy for the vast majority of patients who

have undergone the full procedure.

The success of this protocol has changed the field of islet transplantation dramatically. Two years ago, the results of islet transplantation worldwide were dismal. Today, we now expect that most

patients who undergo the procedure will truly be able to say that

they used to have diabetes. As dramatic as this accomplishment is,

much more needs to be done before we can turn to the children in

this room and say that we have cured diabetes. In the first place,

the patients who have undergone the Edmonton protocol or other

19

variations of this approach have actually given up one disease,

their diabetes, for another one, the requirement for lifelong

immunosuppression.

All of these patients will need to take a combination of several

medicines which prevent rejection of their islets, but which also diminish their bodies’ capacity to fight infections and the development of cancers. They will need to take these medicines for the rest

of their lives if they wish to stay off of insulin. This trade-off has

been justified for a very small number of adult patients who can

truly no longer tolerate their insulin therapy, and for patients who

already need kidney transplants and thus need immunosuppressive

medicines, anyway. However, it is not a reasonable trade-off for

young children.

Therefore, we need to accomplish what has been referred to as

tolerance induction, the reprogramming of the immune system so

that it treats the transplanted tissues from a donor as if they were

a natural part of the recipient’s body. The Immune Tolerance Network, sponsored jointly by NIH and the Juvenile Diabetes Research

Foundation, is working to initiate clinical trials to accomplish exactly this goal. However, there is still no clear roadmap for how

this can be done, and much more research will be needed to bring

this effort to fruition.

The second remaining problem is that children who have type 1

diabetes face an additional immunologic problem when we attempt

to replace their islets. Not only will transplanted islets be subject

to rejection because they come from a different donor, they will also

be subject to immunologic destruction because they are islets and

thus the target of the original autoimmune condition that caused

their disease in the first place. Therefore, even if we learn to accomplish transplantation tolerance and perform islet replacement

without immunosuppressive drugs, we still need to learn how to reprogram the immune system so that these children no longer have

autoimmunity.

The third remaining problem is that even if we could transplant

islets without rejection and without recurrent autoimmunity, we do

not have remotely enough islets to go around. Even if we used

every available cadaver donor pancreas for islet transplantation,

we would have only enough islets to cure 0.1 percent of all people

with type 1 diabetes. That is the number that I want people to remember, 0.1 percent of people with type 1 diabetes.

Despite all the efforts we are making to increase the number of

donors, to improve the yield of islet isolation, we still have no hope

of finding enough islets from human cadaver donors to cure this

disease. There are at least seven different ways in which more islets might be obtained, and scientists are exploring each and every

one of them. First, we might learn to transplant islets from animal

donors. This is called xenotransplantation. We have been trying

this approach around the world and have so far been miserably unsuccessful.

Second, we might learn to genetically engineer other types of

cells so that they produce insulin in a regulated fashion. For example, liver cells, which are abundant, might be made to secrete insulin on demand.

20

Third, we might develop immortalized lines of insulin-producing

cells that could proliferate indefinitely. We would need, however, to

learn how to shut off this proliferation reliably after transplantation to prevent what would otherwise be the transplantation of

a cancer.

Fourth, we might learn to grow cultures of islets so we could increase the yield from each cadaver donor, but so far, whenever we

have gotten islets to grow, they have also stopped producing insulin.

Fifth, we might learn to produce new islets from their precursors

within the pancreas. So far, however, we are not even sure where

these precursors are located, and our best efforts to produce new

islets from them have yielded only droplets, not the bushels that

we require.

Sixth, we might learn to produce islets from so-called adult stem

cells. These are cells that have been found in the bone marrow,

cord blood, and other sites that appear to be capable of differentiating into many different human tissues. However, despite some

recent advances, scientists have been unable to turn these cells

into insulin-producing cells, even after 30 years of work.

Finally, seventh, we might learn to differentiate embryonic stem

cells into insulin-producing cells. We know that these ES-cell lines

can be made to proliferate to produce almost unlimited quantities

of offspring. In addition, during the past year, scientists have succeeded in guiding cells of this type to turn into what some have referred to as pre-islets. These differentiated offspring have produced

insulin, but not yet in normal quantities. It was a dramatic step

forward in this field, making this the most promising avenue of research toward developing an endless supply of insulin-producing

cells for transplantation.

We do not know which of these approaches might someday solve

the critical problem of islet supply. All of these approaches have

been attempted. I urge you, on behalf of the JDRF and all the children with type 1 diabetes, to enable and support research in every

one of these areas. Unfortunately, the most promising of these approaches, the use of embryonic stem cells, is opposed by some, and

I fear that opposition is often based on misunderstandings.

First, the embryonic stem cells that are the most promising for

our research are derived from the leftover products of in vitro fertilization. They are derived from clusters of cells that are today sitting in freezers all across this country, that are due to be discarded. Another misunderstanding is the idea that adult stem cells

are just as good as embryonic stem cells. Someday, we may learn

that that is true. However, we do not know today whether that is

true or not. On the contrary, there is considerable scientific evidence suggesting that embryonic stem cells have major advantages

over other sources of cells.

The JDRF has taken a strong leadership position, advocating the

continued scientific investigation of embryonic stem cells as a possible source of new islets and of tissues to treat numerous other

diseases, of both children and adults. We urge Congress and NIH

to support Federal funding for this research, as well. Thank you for

the opportunity to speak here today.

Senator LEVIN. Thank you, Dr. Auchincloss. Mr. Robbins.

21

1The prepared statement of Mr. Robbins appears in the Appendix on page 78.

TESTIMONY OF JAMES ROBBINS,1 PRESIDENT AND CEO OF

COX COMMUNICATIONS, DAUGHTER WITH DIABETES, ATLANTA, GEORGIA

Mr. ROBBINS. Thank you, Mr. Chairman and Senator Collins.

When I have come to Washington to testify before, it is always in

the field of my profession, in the telecommunications area, with

Senator McCain and Senator Hollings, and those perhaps are easier jobs. This one is a much tougher one, because it involves the

emotions of both being a father and particularly being a father of

a 25-year-old diabetic who was diagnosed 221⁄2 years ago.

So I speak to you from that perspective, and I want to just give

you a couple of anecdotes as to how diabetes is an all-consuming,

family affair. Last Saturday, my wife and I were driving to a wedding in Long Island, where we used to live, and as we were trying

to find the church where this daughter of a friend of ours was

being married, my wife looked over and saw a Chinese restaurant,

and there said, ‘‘I remember that place, because that is where

Peyson had a seizure a number of years ago.’’ So it is that kind of

experience that we go through every single day.

My entire family was on vacation the week before, and our

youngest child was talking to another family that we had come

across on vacation. This youngest child, a biology graduate from

Dartmouth about 2 weeks ago, was very sensitive to the issue of

Peyson’s, at age 25—still good health, but she said to this other

family the great news is that Peyson has had no complications of

any serious impact yet from her diabetes. So, as a family person,

you all should know that diabetes is just all-consuming.

My second and last point was that, as a businessman, I spend

my life on the issue of resource allocation, where can we get the

best bang for the buck that we invest in a particular area of telecommunications. Can we get it here? Can we get it there? Can we

get it somewhere else? I would share with you that I do not know

any place where you can get a better return on your investment

than support for the kind of research work that goes on with and

through the cooperation of the Juvenile Diabetes Research Foundation, if, for no other reason, than to cut down the expense on the

complications that ensue as all these wonderful young people here

will face other issues in conjunction and caused by their juvenile

diabetes.

So, as a businessman dealing with resource allocation, I urge and

urge strongly your support of the funding requests that have been

made for continued research by these very distinguished colleagues

on my left, including stem cell research, absolutely including stem

cell research. You should know that you have a great deal of support from the business community, and I am just one small part

of that, and we are committed to doing anything we can to help you

urge your colleagues in Congress, as well as your colleagues in the

administration, toward that end.

Thank you very much.

Senator LEVIN. Thank you very much, Mr. Robbins.

Mr. Brenneman.

22

1The prepared statement of Mr. Brenneman appears in the Appendix on page 79.

TESTIMONY OF GREG BRENNEMAN,1 FORMER CHIEF OPERATING OFFICER OF CONTINENTAL AIRLINES, SON WITH DIABETES, THE WOODLANDS, TEXAS

Mr. BRENNEMAN. Thank you, Senator Levin and Senator Collins.

I am going to shorten my testimony, as you suggested, in deference

to your votes and the fact that I am between these kids and a

break. Before I start the few comments that I would like to make,

I would just speak as a protective parent, and I know many of you

have been watching your kids up there and you have not been able

to see them. I have had the benefit of seeing them, and I can assure you that what they have been pushing the button on have

been their Gameboys and not their insulin pumps. [Laughter.]

So I think we will be OK. I will never forget the day, on January

20, 2000 when my 11-year-old son Andrew informed me he had diabetes. I was, until last month, the President and COO of Continental Airlines. I am now the Chairman and CEO of Turn Works.

I just had arrived home from a business trip. A call from my wife

confirmed what we had been suspecting, as we watched Andrew

drink water like a fish and drop 20 pounds in about 3 months. I

thought about what I would say to Andrew when I first saw him.

I knew his first thought would be of his grandfather, who had

passed away just a couple years earlier from complications of diabetes after a very long and painful fight.

Andrew had just been to the doctor for his first of thousands of

blood tests and insulin shots. All my meetings had been canceled

for the next day, as we were scheduled to spend the entire day at

Children’s Hospital in Houston, learning how to care for the disease. Our family met in the parking lot of Andrew’s favorite restaurant to have our last supper before we dove head-first into our

new reality. Andrew walked up to me and he put his arms around

me, started crying. He said, ‘‘Well, Dad, I guess I have 17 more

years to live.’’ ‘‘17 years?’’ I responded, ‘‘Andrew, where did you get

that idea?’’ ‘‘Dad, it was 17 years from the time Grandpa found out

he had diabetes till the time he died.’’ I explained to Andrew that he had type 1 diabetes, while his

Grandpa had type 2, and that treatment for the disease was a lot

better than it used to be. ‘‘Dad, will you be with me tomorrow,

when I learn how to treat my diabetes?’’ asked Andrew. ‘‘I will,’’ I

responded. ‘‘Dad, you had to turn around Continental Airlines

when everybody thought it was hopeless. Now you are the best airline. Will you help me find a cure for diabetes?’’ asked Andrew.

[Laughter.]

‘‘Sure,’’ I said, without really knowing what that meant. The next

day at the hospital, we had one of the finest health care professionals I have ever met, Shannon Brow, take us through a mindnumbing crash course on diabetes. She explained to us that Andrew’s new goal was to keep his blood sugar in a tight range, without the benefit of his pancreas, one of the body’s most complicated

and miraculous organs. The consequences of being outside the

range were rather severe.

If Andrew’s blood sugar got too low, he could pass out or go into

a coma. If Andrew’s blood sugar got too high, he would feel like he

23

had the flu and lose control of his emotions in the short-term. He

would ruin his kidneys, heart and liver over the long-term. All

kinds of things, like food, exercises and hormones, would affect his

blood sugar level. Thus started a regime that any parent with a diabetic child is painfully familiar with, and I will not take you

through it, because you have already heard it.

With diabetes, there are no breaks. In addition, Andrew had to

adjust his lifestyle. There is no snacking with friends, eating birthday cakes at parties or eating pizza late at night. He must always

carry food with him in case his blood sugar drops and we must always carry a special shot with us to administer if Andrew lapses

into a coma, before we call 911. That day in the hospital, I watched

my son go from 11 to 18 in 1 day.

Andrew manages his care himself. I am proud of him. Some children and parents have it much worse. Like most parents, I want

to do what is best for my children, so they can dream their dreams

and realize those dreams, making a valuable contribution to this

great Nation. In order to have a chance, these children must have

a shot at a healthy and productive future. The health community

and those who live with diabetes report that they have seen the future of long-term diabetics, and report back it is not a future any

parent would want for their child. We know the only way to ensure

these children and the millions like them to have a future is by

finding a cure for this terrible disease. We need your help. Please

help us give all these children a fair chance. Please help me to live

up to my promise to Andrew to help him find a cure.

Thanks.

Senator LEVIN. Thank you very much, Mr. Brenneman.

Senator Collins.

Senator COLLINS. Mr. Brenneman and Mr. Robbins, I know how

difficult this must be for you as fathers, to see your children go

through this experience. But I want to tell you that hearing your

stories only makes me want to redouble my efforts to make sure

that other families in the future do not have to endure what you

have had to endure, and I do feel, having heard the reports from

Dr. Spiegel and Dr. Auchincloss, that there is such hope in the research.

I first visited Dr. Auchincloss a couple of years ago, I think it

was at the Juvenile Diabetes Research Center at Harvard, and I

was so impressed with the ground-breaking work that is being

done, and I am convinced that those research efforts are going to

eventually produce a cure. The challenges are daunting and the obstacles are many, but I am convinced that, as we continue to work

together, we will ultimately be successful.

I want to follow up with you, Doctor, on some of the issues involving stem cell research, because that is the issue of the day. I

expect decisions are going to be made very soon, and I hope today

that we can build a record to help the President and the Congress

reach what I believe is the right decision in this area. Could you

talk to us more about the issue of human adult stem cells versus

embryonic stem cells? As you know, some of the opponents of embryonic stem cell research are making the argument that adult

stem cells are just as effective, and that we do not need the promise—we do not need the embryonic stem cells. Could you talk more

24

1The graph referred to appears in the Appendix on page 73.

about your judgment on that and also the experiences that we have

had in trying to get mice to produce insulin, using embryonic stem

cells versus adult stem cells?

Dr. AUCHINCLOSS. Thank you very much, Senator Collins. It is

possible that adult stem cells will turn out to be as effective, but

at this point it is too early to make that determination, and to conclude that would be too close off an avenue of research that, at this

point, in fact, looks like the more-promising approach. The simple

reason for that is that we know that the proliferative capacity, the

ability to make more cells from an embryonic stem cell precursor,

is essentially unlimited. We can have as many cells as we need. It

is not so clear that we have entirely that option from the adult

stem cell sources.

The second concern is that we have thus far made more

progress—and I use we in a very liberal sense, of the scientific

community—in differentiating the embryonic stem cells into cells

that actually have the capacity to make insulin, where that has not

been accomplished from an adult stem cell source. So I think it

would be a terribly sad thing to say we can do just as well with

the adult stem cells, there is no need to pursue the embryonic stem

cell angle.

I want to point out one of the critical lost opportunities if we

make it still more difficult to pursue this avenue of research, especially with government funding. I have talked a lot to my very good

friend and colleague, Doug Melton at Harvard, who is pursuing

this type of research. He says, ‘‘Whether the government funds this

or not is not critically important to me. I am a well-established scientist. I have other sources of funding. But when I look at younger

scientists, they do not want to enter this field because they do not

think they will be able to get a grant in this field from the government, which would be typically their first source of funding.’’ It is

very important for the future of this field, for the future of science,

in general, that the government encourage younger scientists to

move into this very promising area, not just for diabetes, but for

many, many other diseases, as well.

Senator COLLINS. One follow-up question for you on that. Is the

hope that using the embryonic stem cells to produce, eventually, islets that could be used for transportation, also that, with embryonic

stem cells, the risk of rejection may be less, also?

Dr. AUCHINCLOSS. That is a very interesting scientific question,

and there are some who believe that that is true. I do not happen

to be one of them, but it is a scientific issue that is very interesting

to go ahead and test further.

Senator COLLINS. Dr. Spiegel, you mentioned the obstacles that

remain with the islet transplantation, which seemed so promising

in the graph that you gave us,1 where this woman apparently is

cured of her need for insulin, but she will now need anti-rejection

drugs for the rest of her life, which are very powerful and have consequences of their own. Where were the islet cells that were used

for these transplantations obtained from? Were they obtained from

cadavers?

25

Dr. SPIEGEL. Yes, Senator Collins. The donor pancreases are

from cadaveric pancreases, and just a few thousand are obtained

each year.

Senator COLLINS. Is it possible to obtain islet cells from living donors?

Dr. SPIEGEL. We talked a good bit about this with the parents

yesterday. I know that any parent of a diabetic child would be willing to do this. Unlike a kidney, which can be taken out whole and

for which transplantation technique is the state-of-the-art, most

surgeons would not want to touch the pancreas. It is a very fragile

organ, filled with digestive enzymes, and to do that would probably

not be a good idea in general.

Senator COLLINS. So until we come up with a way to produce an

abundance of islet cells, the promising results of the transplantation research still are going to remain elusive for many people;

is that accurate?

Dr. SPIEGEL. You are exactly right, and Dr. Auchincloss

quantitated it for you in terms of the shortfall that we would have.

There are real advances in the area of immune tolerance and I

would defer to Dr. Auchincloss, who is an expert. There are animal

experiments that have been done which are important for not just

type 1 diabetes, but for organ transplantation, in general, suggesting that we can have a much more targeted kind of tolerance.

That means we could specifically prevent rejection of the transplant, not block the whole immune system. Even then, however, we

would still have the supply problem, and for this reason, it is critical that we learn everything about how these cells develop, so that

we would be able to solve the supply problem.

Senator COLLINS. Thank you, Senator Levin.

Senator LEVIN. Thank you. Dr. Spiegel, I believe in your testimony you mentioned that there were reports that more and more

children are being diagnosed with type 2 diabetes. Do you have any

theory as to why that is happening?

Dr. SPIEGEL. We actually have striking data. Type 2 diabetes,

unlike type 1, is due primarily to a resistance to insulin action followed by insufficient insulin. Like obesity, it is becoming an epidemic in this country. Type 2 diabetes disproportionately affects

minority groups—Native Americans, African Americans and Hispanic Americans. We are seeing—tragically—type 2 diabetes now

as a childhood disease in pubertal girls, and it is really the lack

of exercise and perhaps inappropriate diet that is driving this.

Senator LEVIN. The New York Times reported last Friday that

the National Institutes of Health (NIH), has come out with a new

report that concludes that stem cells, embryonic stem cells, are

even more promising for developing cures for a range of diseases

than adult stem cells. Dr. Auchincloss has told us this morning

that may or may not prove to be true, finally, but I gather there

is a report that suggests that. Have you seen that report? We have

been trying to get a copy of it.

Dr. SPIEGEL. I have seen only a draft-preliminary version of the

report, which was prepared in the NIH Office of Science Policy.

Senator LEVIN. So that is still in draft-preliminary form, as far

as you know?

Dr. SPIEGEL. As far as I know.

26

Senator LEVIN. Is the decision on stem cell research a decision

which is made by an NIH directive or by an Executive Order? As

I understand it, it was a NIH decision under President Clinton that

allowed it go forward; is that your understanding?

Dr. SPIEGEL. With all due respect, not exactly.

Senator LEVIN. Tell it how it is. That is what I want to hear.

[Laughter.]

Dr. SPIEGEL. NIH has been funding and continues to fund vigorously work on adult stem cells of all kinds, human and animal. At

the same time, we are vigorously funding work on embryonic stem

cells from animals, particularly mice, and that is where we have

the greatest experience. Under, I believe, an amendment to the

NIH appropriation bill, we are not permitted to perform human

embryonic research. I believe you are referring to the NIH guidelines that would permit Federal funding of human embryonic stem

cells that are derived in the private sector. These guidelines were

released for public comment, and received extensive comment. The

actual NIH funding, though, has not begun, and this is exactly

what we are all discussing and on which we are awaiting a decision.

Senator LEVIN. Regardless of the NIH guideline, then, if the Congress maintains that prohibition, that kind of research on embryonic stem cells will not be allowed; is that correct?

Dr. SPIEGEL. That is essentially correct.

Senator LEVIN. So we need two things. We need both the congressional action, plus we need the guidelines from NIH in order

for this to occur; is that accurate?

Dr. SPIEGEL. There are some subtle points, and I am not a legal

expert, so I would defer to those who are. My understanding is that

the work on human embryonic stem cells, if derived in the private

sector, would be permissible. That is the ruling that is under review, according to the NIH guidelines. Under these guidelines,

there is no congressional action required to work on the stem cells

themselves, if they are not derived through Federal funding.

On the other hand, you are correct in that congressional action

would be required to derive the stem cells themselves from human

embryos.

Senator LEVIN. Got you.

Dr. Auchincloss, you indicated in your testimony that embryonic

stem cells have major advantages over adult stem cells, or they appear to have those, and you may have, in response to Senator Collins, given us one of those advantages. But can you outline the advantages for us that the embryonic stem cells seem to have over

the adult stem cells?

Dr. AUCHINCLOSS. I think that there are two primary advantages

that appear at this point. One is the greater ability to produce

more offspring cells, and the second is a greater knowledge of how

to drive the change in those cells from the stem cells into the insulin-producing tissue. We simply know how to do that better from

that stem cells source than we do from the adult stem cell source.

Senator LEVIN. Mr. Robbins, you indicated that you thought the

business community would be very supportive of stem cell research.

Mr. ROBBINS. Yes, sir.

27

1The prepared statement of Ms. Dudley appears in the Appendix on page 82.

Senator LEVIN. I believe that was your reference, and it would

be very helpful, I would think, if that support was sent to the

White House, if it has not already gone there, because any support

that we can get at the White House will be helpful. Senator Collins, Senator Hatch, and a number of other Senators have already

notified the White House of our support for that research. I strongly support it, but the business community, I think, has a very

unique role that it could play here for a number of the reasons that

you testified to, and if you could get that information to the White

House, it would be very helpful to the cause.

Mr. ROBBINS. As a fellow member of that school up in Boston

that the President went to, he understands return on investment,

and that is where I was coming from. I will do everything I can

to get that message to the White House.

Senator LEVIN. That would be helpful. Thank you.

[Applause.]

We are not using these lights today, but those lights on that

clock in the back of the room show that there are five white lights.

That means that less than half of the time is left on the first rollcall vote, and we think now there are just a few minutes left on

that. So you are going to see Senator Collins and I literally run out

of here. This is the seventh-inning stretch, and that means we will

have about 20 minutes, probably, a 15 or 20 minute break. I think

that we are done with this panel. This panel is excused. We are

very grateful to all of you for coming forward. Thank you very

much.

[Recess.]

Senator LEVIN. Well, thank you, everybody, for your patience.

These things happen in the Senate. They are out of our control,

and when they do, we need everybody to do exactly what you did,

to be understanding and patient with us. We thank you for that.

On our final panel today, we have a number of young people who

are joining us, and you are the reason, the real reason behind today’s hearing, to hear from kids who live and struggle with diabetes. Our witnesses on the panel today are Rachel Dudley, from

Southfield, Michigan, who we had a chance to visit with before, and

her Mom; Andrew Webber, from Steep Falls, Maine; Eliza Jayne

Kiley, and her Mom, Michelle; and Daniel Thaller, from Burlington, North Carolina. I do not think I mentioned that the Kileys

come from Vandergrift, Pennsylvania; and finally, we have Caroline Rowley from Houston, Texas.

I think we will start with Rachel, because I know you. I would

just say one thing—Rachel is 15. It has been 11 years since she

was diagnosed with type 1 diabetes, an absolutely wonderful, vibrant young woman, and we are delighted to have you and your

family with us today.

So, Rachel, do you want to start us off?

TESTIMONY OF RACHEL DUDLEY,1 AGE 15, DELEGATE, JDRF

CHILDREN’S CONGRESS, SOUTHFIELD, MICHIGAN

Ms. DUDLEY. Sure. My name is Rachel Dudley. I am 15 years old

and live in Southfield, Michigan. Nearly 12 years and 12,300 shots

28

ago, I was a disease-free child. However, along came a crippling

disease named diabetes to turn my world upside down. At the age

of four, my mother noticed that I had lost weight, I was constantly

thirsty, and my eyes were sunken in. She made an appointment

with my pediatrician. After my doctor examined me, she sent us directly to the hospital. On the way, I remember asking my mother

if I was going to die. She looked at me and said, ‘‘Not if I have anything to do with it.’’

During the 2 weeks I was in the hospital, the doctors told my

mother that if she had waited any longer to bring me in, I might

have gone into a diabetic coma. For the 9 years that followed, my

mother had complete control of my diabetes management and I was

in good health. It was not until I entered adolescence and began

wanting to do things my way that my health began to deteriorate.

Several times a day, my mom would ask if I had checked my blood

sugar level and if I had taken my insulin. I would always tell her

what she wanted to hear, even though I sometimes ignored my

blood sugar reading and injected the wrong amount of insulin. Occasionally, I even injected the insulin into the toilet, instead of into

my arm.

Looking back, I simply did not want to have diabetes, and I

thought that I could be like a normal kid by simply ignoring the

necessity of my daily routine. I wanted to eat when, where, and

whatever I wanted, just like my friends. I wanted to be like them,

and so I became like them. I did not take correct insulin dosages.

Sometimes I did not take it at all. I did not eat according to my

diet, and I ignored my mother. Because of this behavior, my body,

being driven by my blood sugar, was on a wild roller coaster ride.

When my blood sugar was low, my vision was blurred and I walked

into things and acted as though I was drunk. When it was high,

I would feel sick and have bad headaches, and I would feel terribly

thirsty, and in spite of drinking quarts of water, I could never

quench my thirst.

All of this was caused by my simple desire to be like other kids.

This mindset earned me a 2-week stay in the hospital, including

3 days in the intensive care unit, at the age of 13. I learned that

my kidneys had almost shut down. I came to understand that because of my desire to be like my friends, I had almost died. During

day after day of testing and treatment and conversation and training by specialists at Children’s Hospital, I finally understood that

if I wanted to live, I must accept the reality of diabetes as the top

priority in my life. I finally understood that anything less than the

rigorous control of my diabetes management was inviting serious

health problems.

I finally understood that, without insulin, I would die in a matter

of days. While I was in the intensive care unit, my mother and I

made a pact. My pact was if I would do everything in my power

to stay healthy, she would do everything in her power to find a

cure. We have both remained true to our promises. Since 1999, my

mother has raised nearly $20,000 for JDRF. Me, I follow my diet,

I exercise, and I always take the correct amount of insulin according to my blood sugar level. But does this make me well? Absolutely not!

29

1The prepared statement of Mr. Webber appears in the Appendix on page 84.

Until a cure is found, I will always have diabetes. Having diabetes means that I am always just a few hours away from blurred

vision, headaches and nausea, just a few days away from a hospital

stay, and at this very moment, if I no longer have access to insulin,

I am no more than a week away from death. At another time in

my childhood, I asked my mother about the civil rights struggle

and her encounters with racism. She said that she had marched

and advocated for equal rights for all people so that her children

would not have to. Years from now, when my children ask me

about my struggles with diabetes, I will tell them about this day,

and I will say I testified before the U.S. Congress in Washington,

DC, and I passionately urged the leaders of this great Nation to

fund the research to find a cure for diabetes, and I did that so that

hundreds of thousands of kids like you, my child, would not have

to.

[Applause.]

Today, I ask the men and women in this great place, those who

have the power and influence to alter the direction of our Nation’s

resolve, would you do whatever you can, whatever it takes, whatever must be done to increase funding for research to find a cure

for diabetes today? Will you remember the 200 kids who have come

to this Nation’s Capital to give a face and a story to this very real,

very dangerous disease? Today, I ask you to promise to remember

me. Thank you.

Senator LEVIN. Rachel, thank you; a very powerful statement,

and I hope the response is equally powerful. You deserve it. All

these kids deserve it. All Americans deserve it. Thank you. It was

really quite extraordinary.

Andy.

TESTIMONY OF ANDREW WEBBER,1 AGE 13, DELEGATE, JDRF

CHILDREN’S CONGRESS, STEEP FALLS, MAINE

Mr. WEBBER. Hello. My name is Andrew Webber. I am 13 and

I live in Steep Falls, Maine. Thank you for the opportunity to

speak today about how diabetes affects my life. I was diagnosed in

1998. My parents thought that my weight loss, excessive thirst and

stomach pains were related to my tough football workouts. But

after football season was over, my condition continued to worsen.

I will never forget the day that I was finally diagnosed. I felt that

I would rather die than be forced to take shots for the rest of my

life.

But diabetes is not just about taking shots. Having diabetes

makes everything about my life more difficult, and it makes it especially hard to do the things that I love most, like playing sports.

When I am playing sports, having diabetes does not just affect me.

It affects my family, my coaches and my team. For example, my

parents do not just go to my games. They go to all my practices,

too. I would like a little independence, but most coaches either do

not want to be responsible for me or they just do not ‘‘get’’ diabetes.

Sure, my parents like to be supportive, but 3 hours a night, 6 days

a week can seem to be a little over-supportive.

30

1The prepared statement of Ms. Kiley appears in the Appendix on page 85.

Most of my teammates try to be helpful, but I always feel like

my medical condition is on display. Other kids do not understand

that diabetes does not go away when I take my insulin. They do

not realize that I always have to be aware of how I feel and that

I have to be ready to make the right adjustments, no matter where

we are in the game, even if it means sitting out some of the game.

If I am playing hard, my blood sugars might go low, and I have

to stop to have some sugar. If I am not playing as hard as I expected to play, my blood sugars could go high and I could have

blurred vision or lose my ability to concentrate on my coach’s instructions. This is hard for a lot of people to understand.

Last year in Little League, I was having many abnormal blood

sugars. My coaches did not understand how diabetes works, so they

assumed that I was goofing off and I needed to take breaks. Instead of listening to my parents and allowing me the time to recover, they chose to bench me. I got a reputation for being uncooperative.

I am looking forward to a cure in my lifetime. Diabetes is a slow

killer. My grandmother, aunt, and many other relatives have been

diabetic. They have suffered from eye disease, nerve problems and

foot trouble. They have died from heart disease, gangrene and kidney disease. I want to live to be a healthy adult with children,

grandchildren, and great-grandchildren. My dream for the future is

not to be ‘‘the kid with diabetes,’’ but to just be Andy Webber.

Research is the key to a cure, but research requires money. Help

me to live a long life, and to be healthy enough to enjoy it. Please

promise to remember me.

Senator LEVIN. Thank you, Andy, for your wonderful statement.

We read in your little bio here that you have always wanted to be

a forest ranger or a game warden, and that you love the outdoors.

You love to go hunting and fishing and snowmobiling, and those

are the kind of wants that you are entitled to. I know that your

Senator here, Senator Collins, knows where Steep Falls, Maine is,

but I do not. What part of Maine is that in?

Mr. WEBBER. Well, I guess it would be like the southern part,

yes, southeast, I guess, near Sebago Lake.

Senator LEVIN. You do not know where Lake Cabasi, Cabasi

County Lake, is; do you? It is not near there? Nowhere near there.

My expert on Maine says that I am way off. All right. Eliza, you

are here with your mom, so we would like to hear from either one

of you.

TESTIMONY OF ELIZA JAYNE KILEY,1 AGE 5, DELEGATE, JDRF

CHILDREN’S CONGRESS, VANDERGRIFT, PENNSYLVANIA, ACCOMPANIED BY HER MOTHER, MICHELE KILEY

Ms. KILEY. Good morning. My name is Michele Kiley and this is

my daughter Eliza. She is 5 years old and we are from Pennsylvania. Thank you for allowing me to tell you a little bit about our

lives today. When you plan to have children, you dream of whose

eyes they will have, whose personality traits they will carry, or

what they will do in their lifetime, such as being a doctor or a lawyer, or if they will have children of their own. I was diagnosed with

31

juvenile diabetes at the age of 3. When I was young, I was told I

probably would not be able to have children. Everything I read said

that women who have diabetes should not have children. It was

common for diabetic mothers to see severe complications after a

pregnancy, such as retinopathy and kidney disease, let alone the

fears of congenital birth defects in a baby or, worse yet, a miscarriage or stillborn birth. It was just too risky for mother and

child.

As I got older, there were many advances. Glucose meters and

insulin pumps improved our ability to monitor and control blood

glucose levels. Things have changed and, yes, I could have children

if I wanted, as long as I was careful and kept myself under tight

control. Well, I was thrilled. My entire life, I felt as though God put

me on this earth to be a mother. To have children was my only

wish. Eliza was born in 1996. All the things I dreamed of, I noticed. She has my husband’s eyes. She has my smile and my personality—she is as stubborn as a bull.

But the one thing I never dreamed of giving my child was diabetes. My doctor said the chances were slim to none, so not to worry,

and I did not. Well, I am here to tell you that the chances are not

slim enough. One night when Eliza was 3 years old she woke at

2:30 a.m. and asked me for water, which she had never done before. I had the strangest feeling when she asked, but I let it pass.

I was just being overly concerned, I thought. She was a kid who

wanted a glass of water. There is nothing wrong with that.

The next morning, we went through four cups of fluid before I

got up the nerve to run a blood sugar on her. The 15 seconds for

that meter to count down were the longest of my lifetime. My worst

nightmare was confirmed in the matter of a 15-second blood test.

I diagnosed Eliza on July 11, 1999 at home with my glucose meter.

My daughter Eliza now has diabetes. Talk about guilt? I hated myself for a long time. Sometimes I still do. I ask myself often, ‘‘Isn’t

my diabetes enough?’’ I have sacrificed 26 years of my life to this

disease, why does she have to sacrifice her life?

Sometimes I cry myself to sleep at night, fearing the next day’s

insulin pump catheter insertion. I pray that she will not hate me

for giving her this disease. To make matters more strenuous, in

May, my other daughter, Rebecca, turned 3. The anxiety begins

again. I believe that we all have a purpose in life. Sometimes people go their entire lives without knowing their purpose. I often

thought that my purpose was having diabetes so I could be a role

model for Eliza, but being here today has changed my belief. I see

that Eliza and all of these children have diabetes so we have role

models. Eliza is a brave little girl, just like all these children here

today, more brave than any of us could be, facing this disease headon. Please promise to remember Eliza and all the children here

today. Please help them fight for what they have earned, a cure for

diabetes.

Senator LEVIN. Thank you, Ms. Kiley, for coming forward. Your

statement and Eliza’s winning smile are going to help us win this

war. You keep smiling, kiddo. You are doing just great.

Daniel, I understand you want to get into the Army someday.

That is what it says in your little bio here. I am on the Armed

Services Committee. [Laughter.]

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1The prepared statement of Mr. Thaller appears in the Appendix on page 87.

I am Chairman of that Committee, so you have a lot going for

you here today. I just want to let you know that. Your turn, Daniel.

TESTIMONY OF DANIEL THALLER,1 AGE 12, DELEGATE, JDRF

CHILDREN’S CONGRESS, BURLINGTON, NORTH CAROLINA,

ACCOMPANIED BY JESSICA THALLER, AGE 13

Mr. THALLER. Hi. My name is Daniel Thaller. I am 11 years old,

live in North Carolina, and I am one of the millions of Americans

who has been diagnosed with juvenile diabetes.

Ms. THALLER. I am Daniel’s sister, Jessica. I am 13 years old and

I have had diabetes for over 7 years. My sister, Cameron, was also

supposed to be here, but unfortunately she is back at the hotel,

sick. She is 9 years old and has had diabetes since she was 4. We

just want you to know that there are three in our family that suffer

from diabetes.

Mr. THALLER. It all started for me when my mother realized my

diapers had been constantly saturated and I had been very thirsty.

Only at a regular checkup was it discovered that these symptoms

would reveal a radical change in my and my parents’ lives. With

the diagnosis of diabetes came the unthinkable task of giving a toddler multiple daily insulin shots and finger pricks. If you are a parent, how do you explain to your toddler that what you are doing

is what will keep them alive?

After my diagnosis, my mother did monthly blood sugar checks

for both of my sisters, even though doctors told her it was highly

unlikely that either would get it. Can you imagine the shock my

parents felt 2 years later when they discovered a second child had

diabetes, and the amazement and depression they felt 3 years

later, when their third child was diagnosed? Lightning can strike

twice, and even three times. Together, my sisters and I have endured more than 25,000 finger pricks.

School can be really hard for a child with juvenile diabetes. Low

blood sugars can make it hard for me to concentrate, and high

blood sugars make me grumpy or hyper. Sometimes diabetes affects my performance in sports, as well as my social life. If I cannot

concentrate, how can I get A’s? If I feel weak and dizzy, how can

I hit a home run? If I feel sick to my stomach, how can I go to the

movies with my friends? My friends and teachers sometimes ask,

‘‘Does that hurt?’’ or ‘‘What is that thing?’’ I get sick of the attention. Some people even know me as ‘‘the guy with diabetes.’’

My sister Jessica has described this as feeling like being a lab

rat in a cage. Unless you have lived it, you can have no idea what

living with juvenile diabetes is like. A cure for diabetes is very important for me, because I have had it for so long; 9 years is over

four-fifths of my life. I cannot even remember life without diabetes.

Congress should give more funds for the research to find a cure for

diabetes because millions of people suffer from it; 16 million people

in the United States alone have this devastating disease. Every

day, 35 children are diagnosed with juvenile diabetes. That is 35

more kid who will ask themselves, ‘‘Why me?’’ every day for the

rest of their lives.

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1The prepared statement of Ms. Rowley appears in the Appendix on page 89.

Please remember me and my sisters, and give more money for

diabetes research the next chance you get. I do not want to die a

diabetic.

Thank you.

Senator LEVIN. Daniel, thank you for your very, very wonderful

testimony. Jessica, I did not have a bio on you, so I did not know

what your goal was. I know your brother wants to serve in the

Army. Do you have a goal like that, that you would like to share

with us?

Ms. THALLER. I want the freedom to be able to travel. That is

really a big ambition for me, and diabetes makes that really hard.

Senator LEVIN. Thank you.

Caroline, you are our last witness, from Houston, Texas. As we

heard earlier this morning, it was a reference to ‘‘We have got a

problem, Houston,’’ well, you are part of the solution.

Caroline.

TESTIMONY OF CAROLINE ROWLEY,1 AGE 11, DELEGATE, JDRF

CHILDREN’S CONGRESS, HOUSTON, TEXAS

Ms. ROWLEY. Hi. My name is Caroline Rowley and I am from

Houston, Texas. I am 11 years old. The mail bags over there contain almost 60,000 letters of support on behalf of the delegates and

the millions of children with diabetes. I had always heard of bad

things happening to people, but I never thought anything bad

would ever happen to me. Then, all of a sudden, I was diagnosed

with juvenile diabetes. I was in kindergarten. My entire life

changed, and being a kindergartner was suddenly full of drawing

blood from my fingers and taking lots of shots every day. I could

not believe this was happening to me.

In second grade, a blind woman came to speak in my school’s

chapel about seeing-eye dogs. I begged my teacher to ask her if she

had diabetes, because she talked about having to take shots to stay

alive. She was diabetic. When I got home, I asked my Mom if we

would get a new dog or train our dog, Chase, to be my eyes when

I went blind.

My Mom sat me down, and with tears in her eyes, she told me

we were going to do everything in our power to keep me from getting complications. That is why we have to manage my diabetes so

intensely. This was our first discussion about complications, but it

would certainly not be our last. After having diabetes for almost 5

years, my doctor ran a routine test to be sure my kidneys were OK.

She told my Mom we would not hear back from her, that it was

just routine. Two weeks later, my doctor called me and asked me

to re-run the test. I took the test three or four times, but every

time the results were the same. I had protein in my urine, a sign

of the beginning stages of kidney disease. I did not want to believe

it, neither did my Mom and Dad. Now, in addition to wearing an

insulin pump 24–7 and pricking my fingers, I have to take another

drug each and every day for the rest of my life.

When is this all going to stop? I always thought that if I ever

got complications, that I would be grown, but I would still have my

youth to be normal, but diabetes has stolen my childhood and

34

forced me to grow up. I worry about having a seizure, going blind

or losing my kidneys. The top-10 music countdown or the latest

fashions at Gap, these things just do not seem that important in

my life. Most people think of complications as something that happens to older people or after you have had diabetes for a very long

time. I am here to tell you that it is just not true. Look around this

room, there is no way for you to know how many of these children

are already experiencing problems with their kidneys or their eyes,

because diabetes is silent. On the outside, we look healthy. On the

inside, a war is raging in our bodies, a war we cannot fight alone.

Every day I live with many fears. Every night I sit in my bed

and pray for a cure as long as I can stay awake, hoping God will

hear my prayers. It is my responsibility to control my diabetes everyday and try to keep my body from further complications, but

you control whether or not researchers have a chance to cure diabetes. You can give me back my life and I will not have to fear if I

will be blind or on dialysis. My life is already been shortened 15

years just because I was diagnosed with diabetes. I want a full life

like the one most of you and your loved ones have been able to

live—long, and not a life full of pain and complications. I need your

help in finding a cure. Please, please promise to remember me and

all children with diabetes.

Senator LEVIN. Thank you, Caroline, for your wonderful, courageous statement. We understand that you are a star soccer player.

You have managed your diabetes somehow and still are out there

competitively playing soccer. We are delighted with that kind of

willpower and it is a real great statement about your own courage

and the courage you can give to others.

Ken Bentson, who is a Congressman from Texas, from Houston,

is behind you. I assume that is your Congressman, but I am not

sure. Ken, we are delighted that you are with us and having your

support here, as well.

Senator Collins.

Senator COLLINS. Thank you very much, Mr. Chairman. I want

to thank all of you for your wonderful statements. You were so passionate and powerful in arguing for more research and you help remind us what having diabetes is really all about. I promise you

that I will remember you always. I will never forget the testimony

I have heard from Caroline, from Michele, from Rachel, from Andy,

from Daniel, from Jessica, and all of our witnesses today.

Andy, I thought I would ask you a couple of questions about

what it has been like for you to have diabetes. You live in a very

small town in Maine. I have been to Steep Falls, so I know where

it is, and I suspect that you did not know any other kids in your

school with diabetes; is that right? Were you the only one?

Mr. WEBBER. I was the only one in my school. I think there was

one other kid in the district.

Senator COLLINS. So did you have to teach your teachers and

coaches about your disease?

Mr. WEBBER. Yes.

Senator COLLINS. If you had some bit of advice that you would

like to give your teachers and coaches and all the teachers and

coaches across America who have students with diabetes, what

would that be?

35

Mr. WEBBER. I do not know, probably just to keep an extra eye

on them, because anything can happen.

Senator COLLINS. Just sort of watch out for them and be understanding of them?

Mr. WEBBER. Yes.

Senator COLLINS. Did you get treated in Maine Medical Center

in Portland?

Mr. WEBBER. Yes.

Senator COLLINS. Were you able to meet other families there who

had children with diabetes?

Mr. WEBBER. No, I did not meet any other families with diabetes

until a couple of weeks after I got out of the hospital.

Senator COLLINS. Has it been helpful for you to be here today

and to get to meet other children who are going through the same

kind of challenges that you have been going through?

Mr. WEBBER. Yes.

Senator COLLINS. I bet it has, because it must feel pretty lonesome at times, having to cope with your disease; is it, sometimes?

Mr. WEBBER. Yes.

Senator COLLINS. Yes, it feels pretty lonesome.

Mrs. Kiley, I just want to say to you that I was so moved by your

statement that I think your little girl is one lucky little girl. She

has a wonderful Mom. Rachel, your statement was so terrific. You

will be able to tell your children that you were there, just as your

mother was there for you in struggles of previous generations. I

just want to thank all of our witnesses today for their testimony.

Dan and Jessica, how difficult for your family to have three children struggling together with that. That is just so extraordinary,

because as we have learned, a lot of times there is no family history at all and it comes as a big surprise. So I guess the one thing

is at least you have been able to help each other in coping with

your disease.

Jessica, has it been that way? Have you been able to help your

younger brother?

Ms. THALLER. Actually, he was diagnosed first. So, he actually

helped me when I was diagnosed.

Senator COLLINS. Well, Daniel, I admired that, when you talked

about living four-fifths of your life with diabetes, that just seems

so unfair and so difficult, but by being here today you are giving

hope and education to other kids around the world. Caroline, I

want to help your prayers come true, and I just want to say that

all of you are an inspiration to all of us. The work of the Juvenile

Diabetes Research Foundation is so wonderful and I believe that it

will bring us a cure some day. Thank you for your testimony.

Senator LEVIN. Thank you, Senator Collins.

Let me just briefly conclude with the following thought. First, we

owe a great deal of thanks to the families who were here, and I

wonder whether the family members of these particular children,

young adults, would stand if you are in the audience? I would like

to give you some applause, as well.

[Applause.]

Those of us who are lucky enough to be part of a very close family know the wonders of that, and when you have diabetes, it is a

particularly important part of your life that you have supportive

36

families, and we want to thank all of your brothers, sisters, moms,

dads, grandparents, and so forth, for their work, help and their

commitment and support for you.

Each of you have asked us in your own ways to remember to

meet the needs for additional research—we will. Senator Collins

and I and many, many other members of the Congress are determined to add research funds to the NIH budget. We will continue

that struggle with your help. Your statements today, and I look at

each of you as I say this, will mean, and I think Rachel made reference to this, that fewer kids are going to have to go through what

you go through in future years because you came forward today.

We want to thank you for that, for your courage in your daily life

and for the meaning that you have given to your particular disease

in terms of trying to make sure that 5 years from now we do not

need to have the next generation of kids sitting here asking, but

then we will have had the cure that your presence here today has

helped to make possible. Thank you for coming.

[Applause.]

Senator COLLINS. I just want to not only thank the Juvenile Diabetes Research Foundation for its efforts and our witnesses, but I

also want to thank Senator Levin for chairing this hearing today.

[Applause.]

Senator LEVIN. Thank you. We will stand adjourned.

[Whereupon, at 12:53 p.m., the Subcommittee was adjourned.]

(37)

A P P E N D I X

PPREPARED STATEMENT OF SENATOR CLELAND

I want to commend Chairman Levin and Senator Collins and the

other Members of the Subcommittee for conducting today’s hearing

on the adequacy of diabetes research funding. In my State alone,

over 420,000 Georgians are estimated to have diabetes and only

half of this number have actually been diagnosed. It is the seventh

leading cause of death in Georgia. In 1999, the Centers for Disease

Control and Prevention (CDC) reported the prevalence of diabetes

in the U.S. increased 33 percent from 1990 to 1998. We are very

fortunate to have Mr. James Robbins, President and CEO of Cox

Communications, and his daughter, Peyson, from Atlanta. James

and Peyson will share their insights on diabetes, living with this

diagnosis and their commitment to conquering this disease. I would

also like to introduce Deborah Perling of Atlanta and Hunter

Thomas and Keith Gonyea both of Alpharetta, Georgia. Deborah,

Hunter and Keith were diagnosed with juvenile diabetes and are

role models for all of us on how to cope and hope. These young people have my commitment to support the diabetes research needed

to find a cure.

I fully support doubling the National Institutes of Health (NIH)

budget and have also supported diabetes research conducted by the

military and Veterans Affairs health care systems. The total cost

of diabetes to the Nation is more than $100 billion annually. About

25 percent of all Medicare costs are spent on beneficiaries diagnosed with diabetes or diabetes-related health problems. There are

many devastating diseases which need crucial research funding.

However, few illnesses meet all of NIH’s criteria for assigning research priorities: Number of people with the disease, number of

deaths attributed to the disease, degree of disability, degree to

which disease cuts short normal, productive, comfortable life span,

economic and social costs, need to act rapidly to control spread, and

existence of scientific opportunities related to disease.

I believe that researchers are on the verge of discovering the way

to prevent and treat diabetes. I share the concerns of the Subcommittee regarding the decrease in diabetes research dollars. The

proportion of NIH’s budget allocated to diabetes research has fallen

more than 30 percent since 1981. I urge my colleagues to support

this critical funding need.

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