[Senate Hearing 107-134]
[From the U.S. Government Publishing Office]



                                                        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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                   COMMITTEE ON GOVERNMENTAL AFFAIRS

               JOSEPH I. LIEBERMAN, Connecticut, Chairman
CARL LEVIN, Michigan                 FRED THOMPSON, Tennessee
DANIEL K. AKAKA, Hawaii              TED STEVENS, Alaska
RICHARD J. DURBIN, Illinois          SUSAN M. COLLINS, Maine
ROBERT G. TORRICELLI, New Jersey     GEORGE V. VOINOVICH, Ohio
MAX CLELAND, Georgia                 PETE V. DOMENICI, New Mexico
THOMAS R. CARPER, Delaware           THAD COCHRAN, Mississippi
JEAN CARNAHAN, Missouri              ROBERT F. BENNETT, Utah
MARK DAYTON, Minnesota               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              SUSAN M. COLLINS, Maine
RICHARD J. DURBIN, Illinois          TED STEVENS, Alaska
ROBERT G. TORRICELLI, New Jersey     GEORGE V. VOINOVICH, Ohio
MAX CLELAND, Georgia                 PETE V. DOMENICI, New Mexico
THOMAS R. CARPER, Delaware           THAD COCHRAN, Mississippi
JEAN CARNAHAN, Missouri              ROBERT F. BENNETT, Utah
MARK DAYTON, Minnesota               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




                            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
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

 
 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 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.
    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 grass-roots 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.
    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 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 2\1/2\. 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 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.
---------------------------------------------------------------------------
    \1\ The prepared statement of Ms. Moore appears in the Appendix on 
page 53.
---------------------------------------------------------------------------
    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, 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 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 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.
---------------------------------------------------------------------------
    \1\ The prepared statement of Mr. Kline appears in the Appendix on 
page 56.
---------------------------------------------------------------------------
    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 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.
---------------------------------------------------------------------------
    \1\ The prepared statement of Mr. Lipnicki appears in the Appendix 
on page 59.
---------------------------------------------------------------------------
    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 have to be given two or three 
injections of insulin. Tessa was diagnosed with diabetes about 
2\1/2\ 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 
2\1/2\ 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?
    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.]
---------------------------------------------------------------------------
    \1\ The prepared statement of Captain Lovell appears in the 
Appendix on page 61.
---------------------------------------------------------------------------
    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 Foundation 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.
    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.
---------------------------------------------------------------------------
    \1\ The letter to President Bush, from Senator Collins, dated June 
11, 2001, appears in the Appendix on page 38.
---------------------------------------------------------------------------
    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.
---------------------------------------------------------------------------
    \2\ The letter to Tommy G. Thompson, from Senator Collins and 
Senator Breaux, dated February 21, 2001, appears in the Appendix on 
page 39.
    \3\ The letter from Tommy G. Thompson, with attachments, to Senator 
Collins, dated May 24, 2001, appears in the Appendix on page 40.
---------------------------------------------------------------------------
    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 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.

  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.
---------------------------------------------------------------------------
    \1\ The prepared statement of Dr. Spiegel with attachments appears 
in the Appendix on page 63.
---------------------------------------------------------------------------
    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.
---------------------------------------------------------------------------
    \2\ The chart referred to appears in the Appendix on page 70.
---------------------------------------------------------------------------
    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.
---------------------------------------------------------------------------
    \3\ The chart referred to appears in the Appendix on page 71.
---------------------------------------------------------------------------
    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.
    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, insulin-independent, 
and note the normalization of her blood sugars.
---------------------------------------------------------------------------
    \1\ The chart referred to appears in the Appendix on page 72.
---------------------------------------------------------------------------
    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.
    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.
---------------------------------------------------------------------------
    \1\ The prepared statement of Dr. Auchincloss appears in the 
Appendix on page 74.
---------------------------------------------------------------------------
    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 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.
    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.

    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 
22\1/2\ years ago.
---------------------------------------------------------------------------
    \1\ The prepared statement of Mr. Robbins appears in the Appendix 
on page 78.
---------------------------------------------------------------------------
    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.

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.]
---------------------------------------------------------------------------
    \1\ The prepared statement of Mr. Brenneman appears in the Appendix 
on page 79.
---------------------------------------------------------------------------
    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 mind-numbing 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 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 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?
---------------------------------------------------------------------------
    \1\ The graph referred to appears in the Appendix on page 73.
---------------------------------------------------------------------------
    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.
    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.
    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 roll-call 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 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.''
---------------------------------------------------------------------------
    \1\ The prepared statement of Ms. Dudley appears in the Appendix on 
page 82.
---------------------------------------------------------------------------
    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!
    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.
---------------------------------------------------------------------------
    \1\ The prepared statement of Mr. Webber appears in the Appendix on 
page 84.
---------------------------------------------------------------------------
    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.
    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 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.
---------------------------------------------------------------------------
    \1\ The prepared statement of Ms. Kiley appears in the Appendix on 
page 85.
---------------------------------------------------------------------------
    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 head-on. 
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.]
    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.
---------------------------------------------------------------------------
    \1\ The prepared statement of Mr. Thaller appears in the Appendix 
on page 87.
---------------------------------------------------------------------------
    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.
    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.
---------------------------------------------------------------------------
    \1\ The prepared statement of Ms. Rowley appears in the Appendix on 
page 89.
---------------------------------------------------------------------------
    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 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?
    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 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.]




                            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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