[Senate Hearing 109-225]
[From the U.S. Government Publishing Office]



                                                        S. Hrg. 109-225
 
 JUVENILE DIABETES: EXAMINING THE PERSONAL TOLL ON FAMILIES, FINANCIAL 
COSTS TO THE FEDERAL HEALTH CARE SYSTEM, AND RESEARCH PROGRESS TOWARD A 
                                  CURE

=======================================================================

                                HEARING

                               before the

                              COMMITTEE ON
               HOMELAND SECURITY AND GOVERNMENTAL AFFAIRS
                          UNITED STATES SENATE


                       ONE HUNDRED NINTH CONGRESS

                             FIRST SESSION


                               __________

                             JUNE 21, 2005

                               __________

                       Printed for the use of the
        Committee on Homeland Security and Governmental Affairs




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        COMMITTEE ON HOMELAND SECURITY AND GOVERNMENTAL AFFAIRS

                   SUSAN M. COLLINS, Maine, Chairman
TED STEVENS, Alaska                  JOSEPH I. LIEBERMAN, Connecticut
GEORGE V. VOINOVICH, Ohio            CARL LEVIN, Michigan
NORM COLEMAN, Minnesota              DANIEL K. AKAKA, Hawaii
TOM COBURN, Oklahoma                 THOMAS R. CARPER, Delaware
LINCOLN D. CHAFEE, Rhode Island      MARK DAYTON, Minnesota
ROBERT F. BENNETT, Utah              FRANK LAUTENBERG, New Jersey
PETE V. DOMENICI, New Mexico         MARK PRYOR, Arkansas
JOHN W. WARNER, Virginia

           Michael D. Bopp, Staff Director and Chief Counsel
             Priscilla H. Hanley, Professional Staff Member
      Joyce A. Rechtschaffen, Minority Staff Director and Counsel
         Adam R. Sedgewick, Minority Professional Staff Member
                      Trina D. Tyrer, Chief Clerk


                            C O N T E N T S

                                 ------                                
Opening statements:
                                                                   Page
    Senator Collins..............................................     1
    Senator Lieberman............................................     3
    Senator Akaka................................................     4
    Senator Lautenberg...........................................     6
    Senator Chafee...............................................     8

                               WITNESSES
                         Tuesday, June 21, 2005

Mary Tyler Moore, International Chairman, Juvenile Diabetes 
  Research Foundation............................................     8
Douglas Wick, Film Producer and Co-Head, Red Wagon Entertainment.    12
Gary Hall, Jr., Olympic Gold Medal Swimmer.......................    13
Allen M. Spiegal, M.D., Director, National Institute of Diabetes 
  and Digestive and Kidney Diseases, National Institutes of 
  Health, U.S. Department of Health and Human Services...........    16
Stephanie Rothweiler, Delegate (Age 11), JDRF Children's 
  Congress, Falmouth, Maine......................................    22
Ethan Falla, Delegate (Age 13), JDRF Children's Congress, New 
  Britain, Connecticut...........................................    23
Aaron Jones, Delegate (Age 10), JDRF Children's Congress, 
  Piscataway, New Jersey.........................................    24
Shaynah Jones, Delegate (Age 13), JDRF Children's Congress, 
  Piscataway, New Jersey.........................................    24
Katie Clark, Mother on behalf of Ellie Clark, Delegate (Age 4), 
  JDRF Children's Congress, Grandville, Michigan.................    25
Lauren Stanford, Delegate (Age 13), JDRF Children's Congress, 
  Plymouth, Massachsetts.........................................    26

                     Alphabetical List of Witnesses

Clark, Katie:
    Testimony....................................................    25
    Prepared statement...........................................    64
Falla, Ethan:
    Testimony....................................................    23
    Prepared statement...........................................    60
Hall, Gary, Jr.:
    Testimony....................................................    13
    Prepared statement...........................................    38
Jones, Aaron:
    Testimony....................................................    24
    Prepared statement...........................................    62
Jones, Shaynah:
    Testimony....................................................    24
    Prepared statement...........................................    63
Moore, Mary Tyler:
    Testimony....................................................     8
    Prepared statement...........................................    31
Rothweiler, Stephanie:
    Testimony....................................................    22
    Prepared statement...........................................    58
Spiegel, Allen M., M.D.:
    Testimony....................................................    16
    Prepared statement...........................................    41
Stanford, Lauren:
    Testimony....................................................    26
    Prepared statement...........................................    66
Wick, Douglas:
    Testimony....................................................    12
    Prepared statement...........................................    34

                                Appendix

James Schlicht, Chief Government Affairs and Advocacy Officer, 
  American Diabetes Association, prepared statement..............    68


 JUVENILE DIABETES: EXAMINING THE PERSONAL TOLL ON FAMILIES, FINANCIAL 
COSTS TO THE FEDERAL HEALTH CARE SYSTEM, AND RESEARCH PROGRESS TOWARD A 
                                  CURE

                              ----------                              


                         TUESDAY, JUNE 21, 2005

                                       U.S. Senate,
                           Committee on Homeland Security  
                                  and Governmental Affairs,
                                                    Washington, DC.
    The Committee met, pursuant to notice, at 9:16 a.m., in 
room 216, Hart Senate Office Building, Hon. Susan M. Collins, 
Chairman of the Committee, presiding.
    Present: Senators Collins, Lieberman, Akaka, Lautenberg, 
and Chafee.

             OPENING STATEMENT OF CHAIRMAN COLLINS

    Chairman Collins. Good morning, everyone, and a special 
good morning to all of the children who have joined us from all 
over the country who are here today. The hearing will now come 
to order.
    As one of the Co-Chairs of the Juvenile Diabetes Research 
Foundation's 2005 Children's Congress, I am pleased and proud 
to hold this hearing to examine the devastating impact that 
juvenile diabetes has had on American children and their 
families. In addition to hearing this morning about the 
personal experiences of these young people, we also look 
forward to hearing about the research developments and 
breakthroughs in juvenile diabetes research that hold such a 
hope for better treatments and ultimately a cure.
    This is the third Children's Congress hearing that I have 
had the honor to Chair. It has been a great privilege to work 
with Mary Tyler Moore, who has been the International Chairman 
of the Juvenile Diabetes Research Foundation (JDRF). The 
commitment of the JDRF to finding a cure is so inspiring.
    I also want to welcome all of our distinguished witnesses, 
especially the 150 delegates to the Children's Congress who 
have traveled to Washington from every State in the country to 
tell Congress what it is like to have diabetes, just how 
serious it is, and how important it is for Congress to fund the 
research necessary to find a cure.
    And I am particularly pleased to welcome the delegate from 
the great State of Maine. She is 11-year-old Stephanie 
Rothweiler of Falmouth. I met with her yesterday, and she is 
just terrific. You are all going to enjoy her testimony.
    As the founder and the Co-Chair of the Senate Diabetes 
Caucus, I have learned a great deal during the past few years 
about this disease and the difficulties and heartbreak that it 
causes for so many American families as they await a cure. 
Diabetes is a life-long condition that affects people of every 
age, race, and nationality. It is the leading cause of kidney 
failure, blindness in adults, and amputations not related to 
injury. Moreover, it is estimated that diabetes accounts for 
more than $132 billion of our Nation's annual health care 
costs. Health spending for people with diabetes is almost 
double what it would be if they did not suffer from the 
disease.
    These statistics are truly overwhelming, but what really 
motivated me to devote so much energy to this cause was meeting 
more and more people like our delegates today and their 
families, whose lives have been forever changed by diabetes. In 
fact, it was a meeting that the JDRF set up for me in my very 
first year in the Senate that motivated me to found the Senate 
Diabetes Caucus.
    I will never forget meeting in my Portland, Maine, office 
with a family who had a 10-year-old girl who had diabetes. She 
looked up at me and said that she wished she could just take 
one day off from having diabetes--her birthday or Christmas, 
just one day. And, of course, she can't. That made me feel that 
I had a special obligation to be her champion in Congress and 
to work for the research that one day will allow her to take 
days off from having diabetes.
    The young people who are here today are so important. I 
want to tell all of you that, when you tell your stories to 
Members of Congress, we listen because you put the human face 
on this disease. You put the human face on all of those 
statistics. And you will help us focus on what Congress can do 
to better understand and to fund the research that will 
ultimately conquer juvenile diabetes.
    In individuals with juvenile diabetes, the body's immune 
system attacks the pancreas and destroys the islet cells that 
produce insulin. An average child with Type 1 diabetes will 
have to take more than 50,000 insulin shots in a lifetime. 
Juvenile diabetes is the second most common chronic disease 
affecting children, and it is one that they never outgrow.
    While discovery of insulin was a landmark breakthrough in 
the treatment of people with diabetes, it is not a cure. But 
there is good news on the horizon. Since I founded the Senate 
Diabetes Caucus in 1997, funding for diabetes research at the 
National Institutes of Health has more than tripled so that we 
are now spending more than $1 billion a year on this important 
research. And as a consequence, as a direct result of that 
investment, we have seen some encouraging breakthroughs, and we 
are on the threshold of a number of important new discoveries.
    But now is not the time to take our foot off the 
accelerator. We must maintain our commitment to increasing 
funding for diabetes research so that we can take full 
advantage of these opportunities.
    I am particularly excited about the promise that embryonic 
stem cell research holds for a cure for juvenile diabetes. 
Early research has shown that stem cells have the potential to 
develop into insulin-producing cells to replace those that have 
been destroyed in people with Type 1 diabetes. We simply cannot 
ignore the potential that this research holds for the young 
people who are here with us today.
    A major focus of the 2003 Children's Congress was the 
Pancreatic Islet Cell Transplantation Act, which I introduced 
to advance this important research. Thanks to the lobbying 
efforts of the JDRF children and their families, 52 Senators 
cosponsored that bill. And as further testimony to your powers 
of persuasion, it was passed unanimously by both the House and 
the Senate and signed into law by the President late last year. 
So just see what we can do when we all work together.
    You are the very best advocates, and I am so pleased to 
have all of the children joining us today.
    Senator Lieberman.

             OPENING STATEMENT OF SENATOR LIEBERMAN

    Senator Lieberman. Thank you very much, Madam Chairman. 
Thanks for your leadership, which has really been life-
enhancing and life-saving in this area.
    Good morning, kids. How are you? It is not exactly summer 
camp here, is it? [Laughter.]
    It is great to have you here. I thought when I walked in, 
if you would allow me to paraphrase Paul Revere, the red shirts 
are here and the gray shirts are here. [Laughter.]
    But it is not the British that are coming, but this disease 
that has come and attacked us. You are here to make sure that 
we attack back and stop its movement forward. Plus, you are the 
best looking group of lobbyists that I have seen around 
Washington in a long time. [Laughter.]
    Just by being here and telling your story, you are going to 
have an effect. I particularly thank all the witnesses for 
being here. I am proud that on the second panel, one of the 
witnesses is Ethan Falla of New Britain, Connecticut, 13. He is 
a member of his school Honor Society and is very active in 
sports. Senator Collins and I occasionally trade ethnic 
references, so I would like her to know that Ethan is an 
accomplished Irish dancer.
    Chairman Collins. Great.
    Senator Lieberman. He thinks it would be cool, however, to 
be a mounted police officer, and I am sure he will do that and 
much more.
    I just want to say a few words to add on to what Senator 
Collins said. The fact is that we live at an extraordinary time 
in human history. As a doctor said to me a while ago, we have 
learned more about the human body in the last 25 years than in 
all of history before that. It is amazing. And that knowledge 
that we have is already allowing us to treat--and if we work 
together will allow us to cure--diseases like diabetes and 
juvenile diabetes, that affect millions of people here in 
America and around the world. It began with DNA and the Human 
Genome Project and, of course, the extraordinary work that 
Senator Collins referred to that would hopefully go forward 
with embryonic stem cell research.
    This is a disease that affects many people, but I want all 
of you to be optimistic that you are lucky enough to be alive 
at a time when we are going to be able to treat, and I want to 
stress again, cure these diseases if we just work together and 
put enough money into the research to make it happen more 
quickly. It is within our reach.
    I have been working on a proposal, which as soon as I get 
ready I am going to share with Senator Collins, because she and 
I have had a pretty good track record in getting things done 
around here--along with my colleagues on the Committee, Senator 
Akaka, Senator Lautenberg--a proposal that I am tentatively 
calling the National Center for Cures, which would be either 
alongside of or an independent part of the NIH. And the focus 
here is to make sure that we are not only investing, more money 
in basic research, as we are thanks to Senator Collins and 
others, but that we are also investing in a term I have 
learned--``transformational research.''
    Now, what does that mean? It is the research that is done 
to take the basic research that brilliant people are working on 
and to bring it to the medicine chest, to the bedside, to 
everybody's home. So it is not just fascinating research, but 
it is actually treatments and cures. That is the kind of 
coordinated effort I think we need, and it takes money to do 
it.
    I close with a quote from Jonas Salk, developer of the 
polio vaccine. When I was a kid growing up, and that was so 
long ago that dinosaurs roamed the earth. [Laughter.]
    Or at least it feels like that. But anyway, Salk was the 
developer of the polio vaccine, which affected so many people 
of my generation. Kids and parents lived in fear of the 
disease. Salk developed the vaccine and he said, ``Our greatest 
responsibility is to be good ancestors.'' We don't think of 
ourselves that way. Those are words to live by, words to work 
by, and words to guide us as we move toward our goal of better 
treatments and, yes, cures for diabetes. We must be good 
ancestors, those of us up here, and those of you who will 
follow us. In the words of the Juvenile Diabetes Research 
Foundation International, ``Let us be dedicated to finding a 
cure.''
    Thank you, Madam Chairman.
    Chairman Collins. Thank you.
    [Applause.]
    Chairman Collins. Senator Akaka.

               OPENING STATEMENT OF SENATOR AKAKA

    Senator Akaka. Thank you very much, Madam Chairman. Thank 
you for conducting today's hearing on juvenile diabetes.
    I want to begin by using a word that is so well known in 
Hawaii, across the country, and around the world. I would like 
to hear a response from all of you young people and the 
audience, as well, and I want to begin by saying aloha.
    Audience Response. Aloha.
    Senator Akaka. Thank you so much. In Hawaiian, ``aloha'' 
means love. And when I said aloha, I was telling you I love 
you. And when you said aloha, I know you didn't know---- 
[Laughter.]
    But you are telling me that you love me, too. In this room, 
we are trying to see what we can do together.
    So I am going to take the time to tell you how Hawaii has 
been affected by diabetes, as well as what we are doing here in 
Congress to help you.
    Diabetes is a significant health problem in my home State 
of Hawaii. Do you know that an estimated 100,000 people in 
Hawaii have diabetes, according to the State Department of 
Health? And, the Hawaii Medical Service Association notes that 
approximately 2,300 people on the Island of Oahu alone have 
Type 1 diabetes. More than 900 people in Hawaii die every year 
of diabetes-related causes in Hawaii.
    Diabetes is a disease that disproportionately affects 
Native Hawaiians and other Pacific Islanders. In fact, Native 
Hawaiians, Japanese, and Filipino adults living in Hawaii, are 
twice as likely to be diagnosed with diabetes as compared to 
other residents.
    Diabetes is a disease that is extremely difficult for 
patients to manage, as you know very well. Taking insulin 
injections and carefully monitoring blood sugar levels are not 
easy tasks for children and adults alike. Even with careful 
management, diabetes can contribute to significant health 
problems, such as heart disease, stroke, eye disease and 
blindness, kidney disease, and pregnancy complications. We must 
do more to increase funding for diabetes research and enact 
meaningful stem cell legislation to advance treatments and to 
make it easier to manage, treat, and prevent diabetes.
    Though today's hearings focuses on juvenile diabetes, we 
are demonstrating our support for research to improve the 
treatment options available to all individuals suffering from 
both types of diabetes. Overall, we must continue to increase 
the funding for the National Institutes of Health.
    I have been frustrated by the substantial slowing of the 
growth of the NIH budget over the past few years. I understand 
the tremendous importance of medical research to help alleviate 
suffering and improve the quality of life, and I will continue 
to support efforts to increase research funding substantially 
for NIH, especially for diabetes-related research.
    Madam Chairman, like you, I am a cosponsor of S. 471, 
introduced by Senators Specter and Harkin, which would 
authorize Federal funding for research on stem cells derived 
from embryos donated from----
    [Applause.]
    Senator Akaka [continuing]. Embryos donated from in vitro 
fertilization. I remain opposed to the President's stem cell 
policy, which prevents researchers from working on an area of 
research that is very promising and that could alleviate the 
pain and suffering of individuals.
    I look forward to hearing the testimony of our witnesses 
today who will share their experiences of living with diabetes. 
I am especially pleased that one of my constituents, 13-year-
old Dana Akiu, is visiting Capitol Hill today. She is sitting 
right in front of me here. Dana, despite having diabetes, plays 
soccer for Kamehameha Schools and the Real Hawaii Futbol Club. 
I welcome Dana, all of our young people, and the Juvenile 
Diabetes Research Foundation advocates who are in Washington 
today.
    Again, Madam Chairman, thank you so much for conducting 
this important hearing, and I look forward to continuing to 
work with you and all of our colleagues to improve the lives of 
individuals who have diabetes. Thank you very much.
    Chairman Collins. Thank you.
    [Applause.]
    Chairman Collins. I am going to ask, if you can, to refrain 
from clapping until we hear from the children's witnesses 
because we have a very short time this morning. The vote has 
been scheduled for 11 o'clock, so if I could ask that of you.
    Senator Lautenberg.

            OPENING STATEMENT OF SENATOR LAUTENBERG

    Senator Lautenberg. Thank you, Madam Chairman. I don't take 
it as a direct response to the fact that I am about to speak, 
that the Chairman said don't clap. I might not have gotten any 
applause anyway. [Laughter.]
    But I am so glad to see all of you here. I want to pay a 
compliment to Senator Collins because her early involvement in 
this fight against juvenile diabetes is well known. She sort of 
got the ball rolling here. All of us feel deeply about wanting 
to do something here, but Senator Collins really activated the 
activity of the response that you are seeing today.
    And I want to thank Mary Tyler Moore and the rest of you on 
the witness stand for bringing this subject so much to the 
forefront. That is the only way we are going to get enough 
attention to this to move this process along.
    Now, Senator Lieberman talked about things that might have 
happened when dinosaurs roamed the earth. Do you know what 
dinosaurs are? [Laughter.]
    I grew up so long ago.
    I want to congratulate Chairman Collins for the passage of 
pancreatic islet cell transplantation, which I was proud to 
cosponsor. The bill will make it easier for diabetes patients 
to receive this treatment, which has been described as the 
greatest advance in treating the disease since the discovery of 
insulin--a major step forward.
    And I especially want to recognize those young people who 
come from New Jersey. Jimmy Babcock from Ringwood, Gabrielle 
Barton from West Windsor, Katrina Cruise from Clifton, Aaron 
and Shaynah Jones from Piscataway, and Sammy Rovins from Vorhee 
Estate are all here, and I am pleased to be in the same room 
with them. They are part of the courageous group that we see 
here today.
    Now, I am a father of ten grandchildren. The oldest is 11, 
the youngest is a year and 3 months. Nothing concerns me more 
than the health of those children. I try to focus my activities 
here on things that are good for children's health and 
protection and better environment and protection against 
violence and protection against drunk drivers on the road. 
Anything that can protect young people, I support. And it is 
our job as Senators to give every child in America the best 
opportunity to realize their dreams.
    When I look at these faces, it is an inspirational day, as 
opposed to looking at grumpy Senators that I see almost every 
morning. [Laughter.]
    But we are pleased that you are all here. You look 
wonderful. We want you to feel as good as you look.
    I don't know how anyone can look into the eyes of a child 
who has a disease like diabetes and say to them that we aren't 
doing everything in our power to find a cure. I am ashamed of 
that, and I wish that we could change things around. But that 
is exactly what some people are telling these young people and 
the half-a-million other Americans who live with juvenile 
diabetes.
    Stem cell research can help us gain a better understanding 
of diabetes and other diseases that affect more than 100 
million Americans--cancer, heart disease, Parkinson's, 
Alzheimer's--the diseases that afflict the young and the old. 
We can do something about these if we use the tools that we 
have at hand.
    The time has come to expand the current policy on human 
embryonic stem cells so scientists and doctors in America can 
continue to make strides toward cures and treatments. That is 
what we want to do. Two years after the President announced his 
policy on stem cell research, only 19--and I don't want to 
confuse this with little details--stem cell lines, very few are 
available to be used by federally funded scientists, and all of 
these lines have already been contaminated and will never meet 
the standards required for human treatment. But they are there 
for experimentation and research.
    The House of Representatives has voted to expand Federal 
funding for stem cell research. The Senate would support that, 
as well, but as you adults in the room, older people, have 
heard, we have had long debates about judges here and about 
what kind of a process we should use to move things along or 
not move them along.
    Here, we have this program in front of us, and all it 
needs, very simply, is a vote in the U.S. Senate. There are 40 
cosponsors of a bill that came from the House of 
Representatives that wants to make available stem cells to be 
used for research and funding to take care of the program. It 
is not a partisan issue, and I don't want to speak for any 
other Senator, but Republicans and Democrats are in favor of 
expanding stem cell research.
    I asked our Majority Leader, who is a physician and a kind-
hearted physician, someone who has flown to Africa to do heart 
work on people who normally wouldn't even have a doctor 
available, but he and we disagree on the process. I would urge 
him, and I would wish that he could walk in this room and look 
at your faces, and I guarantee you one thing. He would never 
say no in front of this audience, I promise you that. So I urge 
him, let the Senate vote on this issue.
    I can't think of anything more important to these families, 
these children, or to the families of the millions of other 
Americans who are living with diseases that can be cured by 
stem cell research. I once again commend the Chairman for 
making that point in her opening remarks. How can we look into 
your eyes and deny you that hope and that opportunity? It is a 
question I can't answer, but I wish they were here to answer it 
in front of you.
    Thank you very much, Madam Chairman.
    [Applause.]
    Chairman Collins. Thank you. Senator Chafee, we are 
delighted to have you here.

              OPENING STATEMENT OF SENATOR CHAFEE

    Senator Chafee. Thank you, Madam Chairman. I look forward 
to this hearing very much and welcome all the many citizens who 
are here to testify on this issue.
    We are going to focus this morning on the impact of 
juvenile diabetes on children and their families and the 
enormous economic cost to our health care system of caring for 
diabetics, and also about the recent breakthroughs in juvenile 
diabetes research and the need for increased research funding 
and the potential for embryonic stem cell research, as Senator 
Lautenberg just talked about, to provide for new therapies and 
possible cures.
    Thank you, Madam Chairman.
    Chairman Collins. Thank you.
    I am delighted to welcome our first panel this morning. 
Once again, our lead-off witness is Mary Tyler Moore. She is no 
stranger to this cause nor to this Committee. She is probably 
better known to most Americans for her work in film and 
television, but we know her for her remarkably effective 
advocacy on behalf of those with juvenile diabetes. She is, as 
I mentioned, the International Chairman of the Juvenile 
Diabetes Research Foundation, and we are just delighted to 
welcome her back again.
    Our second witness is also no stranger to Hollywood. 
Douglas Wick is an Academy Award winning film producer and co-
head with his wife, Lucy Fisher, of Red Wagon Entertainment, 
which has produced a number of major motion pictures, including 
the soon-to-be-released ``Bewitched,'' which I just happen to 
have seen last night at a premiere. It is terrific, so I 
congratulate you for that. Mr. Wick's daughter, Tessa, was 
diagnosed with Type 1 diabetes when she was 8 years old, and 
she testified before us at a previous Children's Congress, so 
we are delighted to have her back here today, as well.
    Next, we will hear from Gary Hall, Jr., a three-time 
Olympian and ten-time Olympic medalist. Mr. Hall holds the 
title of the ``World's Fastest Man in the Water.'' That is 
quite a great title. He was diagnosed with Type 1 diabetes at 
the age of 25, at the height of his swimming career. He is a 
real inspiration to all the children who are here today. Look 
how much he has done despite having diabetes. Here he is, the 
fastest man in the world in the water.
    And last, but certainly not least, we will hear from Dr. 
Allen Spiegel, the Director of the National Institute of 
Diabetes and Digestive and Kidney Diseases at the NIH. He also 
has testified before us previously, and we are delighted to 
have him here. He will highlight the opportunities in the area 
of juvenile diabetes research and provide us with some examples 
of the research that has been funded by the appropriations that 
we have discussed.
    So thank you all, and Ms. Moore, we will start with you.

   TESTIMONY OF MARY TYLER MOORE,\1\ INTERNATIONAL CHAIRMAN, 
             JUVENILE DIABETES RESEARCH FOUNDATION

    Ms. Moore. Chairman Collins and Committee Members, good 
morning. It is a real pleasure to see you again and to thank 
you from the bottom of my heart for everything you have done to 
help us find a cure for diabetes in your role as Chairman of 
the Senate's Diabetes Caucus, including securing additional 
research funds, passing legislation, promoting islet cell 
transplantation, and standing up for stem cell research. You 
are a true partner in this cause and I am grateful for the 
invitation to speak this morning.
---------------------------------------------------------------------------
    \1\ The prepared statement of Ms. Moore appears in the Appendix on 
page 31.
---------------------------------------------------------------------------
    We are here once again, in fact, to be honest with you, for 
more years than I ever hoped would be necessary, to talk about 
the advances that have been achieved and the challenges of 
finding a cure for all people with diabetes.
    In 2003, JDRF's Children's Congress was a catalyst for 
passage of the pancreatic islet cell transplantation 
legislation that you championed, Senator Collins. That bill 
goes a long way to advance a promising new therapy that has 
already enabled hundreds of seriously ill patients with Type 1 
diabetes to experience dramatic improvements in their quality 
of life.
    With JDRF and NIH support, researchers are now aggressively 
working on new transplant protocols that avoid the need for 
lifelong toxic drugs to prevent rejection. If successful, this 
research will make islet transplantation more suitable for a 
broader group of patients, possibly even including children. I 
am hopeful that this Children's Congress will serve as a 
catalyst for advancing other promising avenues of research, 
including, importantly, stem cell research and regenerative 
medicine.
    I think most of you, or at least some of you, may know that 
I was diagnosed with Type 1, or juvenile diabetes, almost 40 
years ago. And like every one of these children, I have 
struggled with my disease and confronted its tyranny every day 
of my life. Now that means that I have struggled every day of 
every one of those years to achieve metabolic balance between 
what I eat, what I do, and the insulin that I inject.
    It means I have been forced to test my blood sugar several 
times a day and give myself multiple injections of insulin just 
to stay alive, day after day after day. It means I have been 
ripped awake more times than I care to recall in a state of 
extreme distress caused by life-threatening low blood sugars. 
Ask my husband, Robert, who wakes up with me in the middle of 
the night to help me fight our 24-hour-a-day battle.
    It means I am not being spared the complications of 
diabetes. In fact, had it not been for several laser treatments 
on both of my eyes, cataract surgery, and a vitrectomy, I would 
be blind now. I have suffered painful nerve spasms and the 
threat of losing my limbs from poorly healing foot wounds. I 
have battled with peripheral vascular disease, which limits my 
ability to walk or dance. But I have fought back fiercely 
because to maintain my sense of self, I must, just as these 
children here today have waged their individual battles to deal 
with the burdens of Type 1 diabetes and do whatever it takes 
because they must.
    I share this with you today not to complain, but because so 
much of what diabetes does to us is hidden from view, and I 
just believe the truth must be told, the reality shared. The 
difficulties that I have experienced are reflected in each of 
these children who have had their childhood stolen from them 
and who have been forced to contemplate a difficult and 
uncertain future that may all too soon include similar 
complications. For these reasons and so many more, I have 
committed myself to JDRF and to doing all that I can to finding 
a cure for Type 1 diabetes and its complications.
    When I became JDRF's International Chairman 20 years ago, I 
found an organization that truly fulfills the motto ``of the 
people, by the people, and for the people,'' because we were 
founded by parents of children with Type 1 diabetes and 
everything we do is for the benefit of people personally 
affected by diabetes.
    It has been 2 years since our JDRF Children's Congress 
delegation last appeared before you. Each time, you have 
listened and responded to our singular and collective requests 
for increased Type 1 diabetes research funding, and I know it 
is important for you to be assured that the research done with 
JDRF and the Federal Government's support over these years has 
resulted in a strong return on our mutual investment. Well, the 
answer emphatically is it has.
    Because of your support and our close collaboration and 
alignment of goals, we have been able to move promising 
experimental findings into human clinical trials. Right now, I 
am thrilled to report there are literally dozens of them 
underway, human trials that have already begun to introduce new 
treatments addressing diabetes at all stages, from reversing 
long-term heart, kidney, eye, and vascular damage all the way 
to true disease prevention. I am talking about real treatments 
delivering better lives for people with diabetes. Now let me 
highlight just a few.
    Doctors are testing new therapies to halt the autoimmune 
attack that causes Type 1 diabetes, and they see tremendously 
encouraging results. In fact, we are eagerly awaiting results 
this month from a Phase II trial on newly diagnosed Type 1 
patients. Based on preliminary data, we expect this study will 
show that a synthetically engineered antibody designed using a 
naturally occurring human protein can stop the progression of 
Type 1 diabetes by preserving the function of the body's 
insulin-producing beta cells.
    In the area of complications, new therapies to treat the 
disabling eye, nerve, kidney, and vascular disorders caused by 
diabetes are also working their way through clinical trials. In 
the rapidly growing field of regenerative medicine, we have 
increasing evidence that there are ways to grow insulin-
producing cells in the laboratory to regenerate them in people 
with Type 1 diabetes. As a result, in human trials that will 
begin this year, researchers will start treating diabetes 
patients with experimental growth factors with the goal of 
triggering regeneration of insulin-producing cells, essentially 
helping people heal themselves.
    And, of course, scientists tell us that we should be much 
more aggressively pursuing all forms of stem cell research, in 
particular embryonic stem cells, to help accelerate the 
delivery of new regenerative therapies like the one I have just 
mentioned, as well as numerous potential cell replacement 
treatments relevant to diabetes and so many other debilitating 
diseases.
    We will only be able to do this if the Senate joins the 
House and votes to loosen the restrictions on Federal funding 
of embryonic stem cell research. I would ask that each and 
every one of you understand the importance of the related 
legislation that will soon come before you. The House of 
Representatives' historic passage of the Castle-Doggett Stem 
Cell Research Enhancement Act of 2005 just a few weeks ago was 
a milestone for medical research.
    Not long ago, former NIH Director Dr. Harold Varmus stated, 
``It is not unrealistic to say that stem cell research has the 
potential to revolutionize the practice of medicine and improve 
the quality and length of life. We must provide our scientists 
with adequate tools to explore the potential and work toward 
better treatment and cures for people with diabetes, 
neurodegenerative disorders, spinal injuries, heart disease, 
cancer, and more.''
    As the Senate debates and votes on this stem cell bill, I 
ask you to remember us. Remember the stories we tell about 
injections, blood tests, about seizures, blindness, kidney 
failure, heart attack, amputations and strokes, about tearful 
nights and worrying parents, about lives altered wholly and 
completely, about what a cure really means to me and these 
courageous delegates and the millions just like us.
    Much of the progress we have made in research thus far has 
been the result of strong public-private partnership between 
the Federal Government and JDRF. While we are here today asking 
the Federal Government to do its part in helping to fund 
research to give us a cure, thousands of passionate JDRF 
volunteers around the country raise private dollars toward the 
same effort.
    Since our founding in 1970, JDRF has given nearly $1 
billion to diabetes research, and we have just launched a 
campaign to raise $1 billion more in the next 5 years to 
accelerate the delivery of therapies in all the areas that I 
have just mentioned.
    As before, however, we need the Federal Government as our 
partner. We are falling short of what the experts say is needed 
to get us to a cure as quickly as possible. The congressionally 
mandated Diabetes Research Working Group recommended a $1.6 
billion budget at NIH to fund its share of all the 
extraordinary opportunities in this area. However, actual NIH 
funding today is only at approximately 65 percent of this goal. 
We must do better. We can, and with your confirmed support, I 
know we will. We deeply appreciate the commitment and the hope 
you have provided us in the past.
    Madam Chairman and Committee Members, I cannot say often 
enough, diabetes is an all too personal time bomb which can go 
off today, tomorrow, next year, or 10 years from now. That is 
why we are working and doing everything in our power and then 
some to accelerate the cure. To achieve our goal of a world 
without diabetes, we must continue to work together as a Nation 
to fund the research, craft policies, and take bold actions 
that enable progress not merely in small steps, but in big 
leaps and bounds.
    On behalf of myself and my 150 other fellow delegates, I 
thank you, Senator Collins, and your Committee for your 
unrelenting perseverance and leadership in the effort to make a 
cure for diabetes a national priority. I know that with all of 
us working together, we will fund it. Thank you.
    Chairman Collins. Thank you for your eloquent testimony.
    Mr. Wick.

 TESTIMONY OF DOUGLAS WICK,\1\ FILM PRODUCER AND CO-HEAD, RED 
                      WAGON ENTERTAINMENT

    Mr. Wick. Thank you, Senator Collins, for your tireless 
efforts. Thank you, other Committee Members. Thank you, kids 
and your families, and particularly the other dads.
---------------------------------------------------------------------------
    \1\ The prepared statement of Mr. Wick appears in the Appendix on 
page 34.
---------------------------------------------------------------------------
    A few years ago when my family first came to the Children's 
Congress, it was like looking in a strange mirror. Everywhere, 
we saw other families with diabetes. All around us, children 
were pricking their finger, filling syringes, injecting 
themselves, and in every father, I saw myself. I realized I was 
part of a new tribe that was more defining than my race, my 
religion, or my economic status. I was a father of a child with 
an incurable disease.
    In the weeks before our daughter, Tessa, was diagnosed, I 
was a guy with a great sense of possibility. I was about to 
make a movie about Second Century Rome, and I was searching the 
world to find the right place to build the ancient Coliseum for 
the movie ``Gladiator.'' Our family had just returned from 
Christmas in Hawaii, and while we were there, our youngest 
daughter, Tessa, seemed unable to quench her thirst. She was 
gulping whole bottles of Evian, and we thought something was 
wrong.
    When we went home, we went to see our doctor, and he said, 
``Your child has diabetes.'' It was that fast. But it wasn't 
until the afternoon that the reality came crashing onto me. I 
had gone to Tessa's school to pick her up to take her to the 
hospital. We loved that school. It was a place where the three 
sisters had been young, where I had learned about being a 
parent. It was a place of safety and protection. I went to 
Tessa's class to pick her up and I took her to the office to 
sign her out and there was a form, a place where you had to 
fill in the reason for having her leave early. I didn't know 
what to put, and I finally wrote ``medical.'' It was the first 
time that I cried.
    That night, I sat on Tessa's bed and tried to explain her 
new life to her. We used to call her ``Frat Girl'' because she 
was always in a good mood, but that night, she wasn't. She had 
had five shots that day, and she said, ``Will I have to have 
any more shots?'' ``Yes,'' I answered. ``How many?'' ``Two a 
day or more.'' ``For how long?'' ``I am not sure.'' ``But for 
how long?'' ``Well, as of right now, forever.''
    As I sat on Tessa's bed, she told me that she no longer 
believed in God because if there was a God, he wouldn't do this 
to kids. I have never felt more like a failure as I sat beside 
her. I was her dad. I was supposed to make things OK. I was 
supposed to keep her safe. I promised her somehow, some way, we 
would find a cure. That was 6 years ago.
    My wife and I felt alone and afraid. Tessa was shy and 
self-conscious and didn't want the other kids at school to 
know. She didn't want to be different. But the word got out, 
and the word got out that Tessa was in trouble. The next day we 
went to school, and as she went to test her finger, prick her 
finger, there was a protective circle of children around her, 
and they never left.
    These kids have walked mile after mile for diabetes, with 
Tessa's two sisters leading the way. They have sold hundreds of 
glasses of lemonade, squeezed money from their parents, and 
pounded on every neighbor's door with a simple plea, ``Our 
friend has diabetes, and we are going to get a cure.'' Tessa 
found her proof of God all around her on the shining faces of 
these friends.
    When she was 10, Tessa testified before this Committee. She 
was feeling very hopeful. But as she waited for her turn, like 
all of you, she heard details about her disease that we had 
tried to minimize--kidney failure, amputation, and blindness. 
Once again, I asked myself, what future could I offer my child?
    I reached out to my friend, Nancy Reagan. My father, 
Charles Wick, had served in the Reagan Administration for 8 
years. When the Reagans came home to Los Angeles, I had watched 
Mrs. Reagan robbed of her golden years where she intended to 
sit on the porch of the ranch, reminisce about Washington and 
the likes of all of you. But Mrs. Reagan was determined to 
spare other families her fate.
    Together, we sought out the most respected scientists and 
researchers, and we were amazed at the consensus. The best 
brains in medicine and science, including the vast majority of 
Nobel Prize winners, were convinced about the promise of 
embryonic stem cells.
    The day President Bush was to announce his position on 
Federal funding for stem cell research, our whole family sat 
around the TV waiting. As the President announced his new 
policy, my wife, who always kept her chin up for the children, 
started to cry.
    The dreadful complications of diabetes, as you all know, 
can start after 5 years. Last year, we passed our 5-year mark. 
Now every time we go to the doctor, Tessa has a kidney test and 
an eye test, and after the visit, as we wait for the results, 
we are scared.
    I am here today to beg you for my daughter's future and the 
future of these other children. Please let me tell my daughter 
that the Congress of the United States will use its might and 
heart to pursue every avenue of the science that can restore 
her health.
    We can make movies about ancient Rome, where men like 
Maximus can rise up, sword in hand, to fight for good. But even 
Maximus can't save Tessa or any of these children. These 
children need a different kind of hero, one wearing not a toga 
but a suit or a dress, and one who will fight not in the arena 
but on the floor of the Senate for their health and their 
futures. Thank you.
    Chairman Collins. Thank you for your very moving testimony.
    Mr. Hall. Thank you.

   TESTIMONY OF GARY HALL, JR.,\1\ OLYMPIC GOLD MEDAL SWIMMER

    Mr. Hall. Good morning. It is an honor and a pleasure to 
appear before this Committee today to speak about the way 
juvenile diabetes has impacted my life and the need to find a 
cure as soon as possible. I want to first thank you, Senator 
Collins, for all you do as Co-Chair of the Senate Diabetes 
Caucus and for holding today's hearing.
---------------------------------------------------------------------------
    \1\ The prepared statement of Mr. Hall appears in the Appendix on 
page 38.
---------------------------------------------------------------------------
    My name is Gary Hall. Most people know me from my swimming 
achievements in the Olympic games. I am a three-time Olympian, 
a ten-time Olympic medalist, and hold the record as the fastest 
swimmer in U.S. history and in organized competition worldwide.
    Swimming is in my genes to some extent. My father, Gary 
Hall, Sr., was also a three-time Olympian for the United 
States. I started swimming seriously when I was 14, and won my 
first national title at the Junior National Championships. I 
continued my success at the University of Texas in the mid-
1990's and swam at the 1996 Olympic Games in Atlanta, where I 
won four medals. I was feeling very good about my life and 
where it was going.
    But in 1999, I noticed an unsettling change coming over me. 
I was feeling tired all the time. I had a constant thirst I 
could not quench. My vision became blurry, and finally, I 
collapsed. This is when I was diagnosed with Type 1 diabetes.
    The news was a shock, and I was incredibly upset and 
discouraged. Since there was no history of the disease in my 
family, you can imagine my disbelief. At the time, I really 
didn't have a good understanding of what diabetes was. Like a 
lot of people, I thought it happened to those people who were 
older and who had neglected their health for many years and 
didn't get enough exercise. I just didn't understand how this 
could have happened because I, on the other hand, had spent my 
entire life eating right, exercising, and minding my health.
    After the diagnosis, the first thing I did was go home to 
my computer and look up as much on the disease as I could find. 
I learned that my pancreas had been attacked by my own immune 
system, preventing me from converting food into energy. I also 
learned that I would have to take insulin shots for the rest of 
my life just to stay alive.
    As far as competitive swimming went, I had no idea if I 
would be able to continue. It was an earth shattering moment 
for me because I had gone through so much and felt that I was 
at the peak of my physical condition.
    My diagnosis came one week before I was to compete in that 
season's biggest meet, the Spring National Championships, and 
all I could do was go away and clear my head. I ended up going 
to the mountains of Costa Rica with my wife, Elizabeth. She was 
incredibly supportive in helping me get through this life-
altering week. In Costa Rica, I did a lot more reading about 
diabetes to gain an even deeper understanding of the disease. 
It was frightening. I read about people going blind, losing 
their legs and their kidneys to diabetes. For me, it was just a 
matter of when.
    Sometimes, the burden of knowing what the disease could do 
made me feel destructive. At times like this, I would swim 
offshore into shark-infested waters until land was out of 
sight. I would turn around and swim back. But as time passed, I 
came to terms with my disease and knew I needed to accept the 
circumstances, and I decided that I had the opportunity to do 
something to educate people about the horrible effects of 
diabetes and the desperate need for a cure.
    When I returned to the United States, I got in touch with 
Anne Peters, a Los Angeles endocrinologist, who assured me 
there was no reason to quit competitive swimming. I decided to 
go back into serious training, but with a new attitude toward 
everything. If there is a bright side to this, it is that I no 
longer take anything for granted, in swimming or in life in 
general. I live every day as if it is going to be the last.
    I am happy to say that since my diagnosis, I have continued 
my swimming success, winning four more medals at the 2000 
Olympic Games in Sydney and another two in 2004 in Athens. But 
I have also realized I can make an even bigger impact for 
people with diabetes. I have had a chance to encourage millions 
of people living and suffering with this disease. If I could 
talk about what I went through and what I have still been able 
to achieve, I might somehow alleviate the feeling of 
helplessness and defeat that can overcome a person, more often 
than not a child, when diabetes is first diagnosed.
    Soon after my diagnosis, I became active with the Juvenile 
Diabetes Research Foundation and have been a staunch advocate 
for their research efforts. I am proud to be here today with 
these 150 amazing children you see sitting before you, telling 
you why you must do everything in your power to help find a 
cure through the best science available to America.
    Diabetes is always with us. It is not something you can 
take a vacation from, even for a day. We have to test our blood 
sugar as often as 10 to 12 times every day, and we rely on 
insulin as life support. It is a delicate balancing act. We 
have to constantly calculate the number of carbohydrates we 
eat, the amount we exercise, and the number of insulin 
injections we need to take to keep our blood sugar levels in 
normal range. And still, we lead a life in which we are never 
more than a few minutes away from a dangerous change in blood 
sugar levels or the longer-term risks of life-threatening 
complications.
    You all have the power that many of us envy, the ability to 
control public funds and public policy. We need more funding 
from Congress for diabetes research so that researchers can 
take full advantage of all the scientific opportunities that 
currently exist that may lead to a cure.
    In addition, it is extremely important that you help expand 
the current policy on Federal funding for embryonic stem cell 
research. Embryonic stem cells represent one of our best hopes 
for curing Type 1 diabetes, and it is disheartening for those 
of us with the disease to see progress delayed by limiting what 
research can be done with Federal funding. When I swam in the 
Olympics, I always tried to be the best in the field, not for 
myself, but because I was representing my country. The United 
States has historically been the best and a world leader in 
scientific discovery. It is incredibly frustrating to see the 
United States falling behind other countries in this promising 
area of science.
    I know first-hand that it is possible to achieve your 
dreams, even in the face of adversity. I ask that you look 
around this room at these brave children who struggle to 
overcome the adversity of diabetes every hour of every day. 
These kids represent future teachers and doctors, businessmen 
and businesswomen, mothers and fathers, maybe even a future 
Olympic athlete or U.S. Senator. In short, they represent our 
future.
    Please help us to ensure that our collective future is 
bright by doing all you can to remove the cloud of diabetes 
that hangs over these children. Join us in educating Members of 
Congress about the incredible research opportunities that exist 
to develop therapies and a cure for juvenile diabetes, 
including the potential of stem cell research.
    Thank you for the opportunity to appear before you today. 
Thank you.
    Chairman Collins. Thank you very much for your inspiring 
testimony.
    Dr. Spiegel, welcome.

  TESTIMONY OF ALLEN M. SPIEGEL, M.D.,\1\ DIRECTOR, NATIONAL 
   INSTITUTE OF DIABETES AND DIGESTIVE AND KIDNEY DISEASES, 
 NATIONAL INSTITUTES OF HEALTH, U.S. DEPARTMENT OF HEALTH AND 
                         HUMAN SERVICES

    Dr. Spiegel. Thank you. Chairman Collins, Senators 
Lieberman, Chafee, and Lautenberg, I appreciate the opportunity 
to testify before you on the research efforts of the National 
Institutes of Health (NIH), directed toward improving the lives 
of people with Type 1 diabetes with the ultimate goals of 
curing the disease and preventing it in those at risk.
---------------------------------------------------------------------------
    \1\ The prepared statement of Dr. Spiegel appears in the Appendix 
on page 41.
---------------------------------------------------------------------------
    On behalf of my colleagues at NIH, I wish to express my 
appreciation to Congress for the support you have provided in 
funding NIH, and in particular for the Special Type 1 Diabetes 
Research Funding Program. I acknowledge our accountability to 
you for how we have used these funds and our accountability to 
the children and families here whose hopes for a better future 
depend on what we accomplish with these funds.
    I have submitted for the record a detailed written 
statement, but here I will summarize some of the research 
accomplishments, challenges, opportunities, and our plans to 
address them.
    I thought I could most readily convey the challenges of 
Type 1 diabetes using the image of life as an ocean voyage on a 
large ship. Every parent's wish for his or her child is a 
comfortable, productive, and long passage. Unfortunately, 
serious diseases can prematurely terminate that passage, and 
that is exactly what Type 1 diabetes did before the discovery 
of insulin in the 1920's. Striking children and teens, it in 
essence caused them to fall overboard without a life preserver 
because there was no effective treatment. Even someone with the 
swimming ability of a Gary Hall, Jr., would not have survived 
then.
    Insulin provided a life-saving treatment, but it did not 
represent a true cure. With insulin treatment, one had to worry 
every moment of one's life about blood sugars being too high, 
leading to complications such as blindness and kidney failure, 
or blood sugar being too low, causing coma and even death. In 
essence, on insulin treatment, people with Type 1 diabetes were 
safe from drowning, but they were consigned to make the ocean 
voyage on a small lifeboat, laboriously trying to avoid ocean 
hazards doing the routine things in life most of us take for 
granted.
    Over the years, research has led to steady improvement in 
the length and quality of life of people with Type 1 diabetes. 
Newer forms of insulin developed using biotechnology, more 
accurate glucose monitoring developed by bioengineers, all help 
achieve better blood sugar control. That is key, because NIH 
research showed clearly that tight control of blood sugar could 
significantly reduce the development of small blood vessel 
damage, leading to blindness and kidney failure.
    Just 2 weeks ago, investigators from our EDOIC study of 
nearly 1,400 people with Type 1 diabetes reported that tight 
blood sugar control cut in half the occurrence of serious heart 
disease, the leading cause of death in Type 1 diabetes. All of 
this progress, though, still leaves people with Type 1 diabetes 
in that lifeboat. It is a better equipped lifeboat, able to 
travel much longer and avoid many hazards, but it is still not 
where we want to be.
    We need to get children with Type 1 diabetes back on that 
large ship, no longer worrying around the clock about eating, 
exercising, and blood sugar. We need a cure.
    The opportunities have never been greater. One line of 
research seeks to develop a closed-loop system, an artificial 
pancreas. Early NIH investments in glucose-sensing technology 
have spurred industry efforts to develop continuous glucose 
monitoring and to connect this with automated insulin delivery. 
DirecNet, a clinical network supported by the Type 1 funds, 
studies the latest continuous glucose monitoring technology in 
kids just like these to improve their treatment and help speed 
development of an artificial pancreas.
    It is unlikely, though, that any mechanical system will 
ever attain the performance of the pancreatic islets whose beta 
cells normally sense a rise in blood glucose and release 
insulin in response. Proof of that came from the pioneering 
Edmonton protocol which showed that islet transplantation could 
lead to sustained independence from insulin treatment in adults 
with Type 1 diabetes. This left us, though, with two major 
hurdles to overcome, achieving transplant tolerance without the 
need for life-long immunosuppressive drugs, and finding an 
inexhaustible supply of insulin-secreting beta cells.
    To overcome the first hurdle, NIH's Immune Tolerance 
Network and the newly formed Collaborative Islet Transplant 
Consortium seek to develop better ways to achieve transplant 
tolerance and long-term insulin independence.
    For the second hurdle, our Beta Cell Biology Consortium 
brings together the best researchers in the country to study 
both adult and federally approved embryonic stem cells with the 
goal of developing a source for cell replacement therapy.
    To truly achieve success, though, we need to be able not 
only to cure, but also prevent Type 1 diabetes. In essence, we 
need to prevent kids at risk of the disease from ever falling 
off that large ship. To do that, we need to know the genetic 
and environmental determinants of the disease, and the Special 
Type 1 Diabetes Funding Program has enabled us to form 
consortia to achieve these goals. We need to understand in 
detail why the immune system attacks its own pancreatic islets 
and to harness that information to develop safe and effective 
prevention methods.
    Our research now allows us to identify those at high risk 
before they actually develop Type 1 diabetes. Recent results 
show that insulin itself is a key trigger of the autoimmune 
process, not just in mice, but in people. Though experiments in 
animals show that insulin given at just the right time could 
prevent the disease, our DPT-1 trial, unfortunately, failed to 
show a benefit of injected insulin in people. A possible 
beneficial effect seen with oral insulin, though, will be 
carefully reexamined in our TrialNet Consortium, which is also 
doing other pilot prevention studies.
    An antibody against immune cells has shown promise in 
preserving beta cell function in adolescents with recent onset 
Type 1 diabetes, and a controlled study to be published later 
this week reinforces that promise. We must be clear, though, 
that any cure or prevention method will have to be not only 
effective, but safe in both the short and long-term. While we 
don't want to leave kids with Type 1 diabetes stuck in that 
lifeboat forever, it is certainly preferable to ending up 
overboard because of unsafe interventions.
    Developing safe and effective cure and prevention methods 
involves making tough decisions. To be certain we make the 
right ones, this January, I launched a new strategic planning 
process with extensive input from external scientific experts 
and patient advocacy groups such as the JDRF. We expect this 
plan to serve as a guide, allowing us to use our resources most 
effectively in addressing the challenges before us.
    Chairman Collins, Senators Lieberman, Chafee, and 
Lautenberg, Children's Congress delegates and your families, 
distinguished guests, I hope you can appreciate that my 
colleagues I and at NIH and the researchers we represent are 
fully committed to this cause. You deserve nothing less. Thank 
you for your support and your attention.
    Chairman Collins. Thank you, Doctor, for that encouraging 
data.
    We have a bit of a time problem this morning because there 
is an unexpected vote that has been scheduled for 11 o'clock, 
and I want to make sure that we get to hear from all of our 
witnesses on the next panel. I am therefore going to ask my 
colleagues to only ask one question so that we can make sure we 
can get through the next panel. That is very hard for Senators, 
to only ask one question, especially when we have such an 
extraordinary panel before us.
    Mr. Wick, I am going to direct my one question to you. You 
mentioned in your testimony the work that you are doing with 
Nancy Reagan and the promise that embryonic stem cell research 
holds for diseases like Alzheimer's, Parkinson's, spinal cord 
injuries. Could you elaborate for us on the promise of stem 
cell research for providing treatments or a cure for juvenile 
diabetes, because we do expect within the next month to have 
that important debate on the Senate floor.
    Mr. Wick. Yes. As we started our exploration, obviously, I 
was searching as a father with a diabetic child and she was 
searching as a wife who had just lost her husband to 
Alzheimer's and suffered through his decline, but she is also, 
as you know, the daughter of a doctor and very interested in 
medicine.
    So we met with several different scientists and also met 
with people independently, and we would compare notes, and what 
we got, and we were surprised, was how much consensus we heard 
really from, as you know, the vast majority of Nobel Prize 
winners and a huge majority of the most gifted medical people 
in the country, and they all said embryonic stem cell was 
certainly the best shot for diabetes, would have some major 
impact on Alzheimer's, at worst, at least understanding the 
disease. And then my friend, Michael J. Fox, who I did ``Stuart 
Little'' with, has Parkinson's. And everywhere I turn, other 
families with diseases were finding embryonic stem cell was 
their hope. Of course, they need more stem cell lines.
    Chairman Collins. Thank you. Senator Lieberman.
    Senator Lieberman. Thanks, Madam Chairman. Now that you and 
I have worked together to protect the right of filibuster on 
the Senate floor---- [Laughter.]
    We can limit ourselves to one question here.
    First, to all the witnesses, thank you for very compelling 
and effective testimony.
    I am going to ask a quick question of Dr. Spiegel. In your 
written testimony, you cite six research goals for NIH. I want 
to ask you if you would identify what the most significant 
challenge is now that you are facing to the kind of progress 
that we want to see.
    Dr. Spiegel. Thank you, Senator Lieberman. Indeed, the two 
major hurdles I described are the significant challenges. One 
is to understand the basis for the immune system attack on 
these pancreatic islets. Understanding that will not only 
potentially allow us to cure the disease in those who have it, 
reverse it in those with recent onset, but also prevent it in 
those at risk.
    At the same time, for the cure of Type 1 diabetes, cell 
replacement therapy is challenging. This is, of course, where 
the stem cells come in. This is potentially extremely 
important. In this regard, we need to be able to learn how to 
grow many of these insulin-secreting beta cells in a dish, and 
this can be done. Scientists are working on it. Doing that kind 
of work will also allow us, as Mary Tyler Moore so eloquently 
said, to learn how to help regenerate the beta cells that are 
in the body and still functioning, even in some people with 
longstanding Type 1 diabetes, to a limited degree.
    Senator Lieberman. Thank you.
    Chairman Collins. Thank you. Senator Chafee.
    Senator Chafee. I thank the Chairman. I am sure the many 
people standing in back, the families standing in back, are 
grateful for short questions and answers also.
    Dr. Spiegel also--and I thank the entire panel for your 
moving testimony--what kind of experience do you have on the 
private funding for embryonic stem cell research versus the 
public funding and the Federal funding? Is the private funding 
significant?
    Dr. Spiegel. Certainly there is private funding for 
embryonic stem cell research. We work very closely in 
conjunction with the private sector, and this relates to 
Senator Lieberman's comments. The only way that we can make 
progress is for the federally supported researchers and for the 
NIH to work together with the private sector.
    In this instance, while there are private efforts, we are 
somewhat shielded from those and so I can't really give you my 
experience. I meet with CEOs on an even, level playing field, 
working on areas like trying to prevent Type 1 diabetes with 
promising treatments. But in the arena of human embryonic stem 
cell research, there is a wall.
    Chairman Collins. Thank you. Senator Lautenberg.
    Senator Lautenberg. Thank you again, Madam Chairman, for 
bringing this panel in front of us. Before I ask my question, I 
just say thank you to each one of you, particularly the three 
who have been personally touched by juvenile diabetes, for your 
moving testimony.
    As such, my question is for our distinguished Chairperson, 
and that is I don't know whether there is a video of the 
testimony that we heard this morning, but I would be willing to 
get together and try to devise an opportunity or develop an 
opportunity for all the Senators to see and hear the testimony 
as presented. It is an eloquent statement, and I say shame on 
us if we don't do something about this.
    Look at these children, the most beautiful group of 
children that I have ever seen. Here they are, as Mr. Hall 
said, they have to learn that there is hope and there is 
opportunity for the future. Your example is one of the finest 
things that we could imagine, and that is get through it. Get 
on to a normal life and let these kids know there is that.
    Dr. Spiegel, and I am cheating on the one question thing 
because questions to the Chairman don't count, but---- 
[Laughter.]
    Dr. Spiegel, how do you respond to claims that adult stem 
cells are a sufficient or an appropriate replacement for 
embryonic stem cells in treating diseases such as those that 
have been discussed here this morning, particularly diabetes?
    Dr. Spiegel. My response unequivocally is that we need 
both. And as you have heard, not only most scientists, Nobel 
Laureates, and others agree we need both. We need to pursue 
both avenues because that is our best hope of being able to 
learn how to cure this disease. We need to be able to do 
embryonic stem cell research--first, because it can give us a 
better understanding of what causes Type 1 diabetes; second, 
because it will actually inform our ability to work with adult 
stem cells as well as to stimulate endogenous regeneration; and 
finally, because, and one cannot guarantee or promise this, the 
embryonic stem cells themselves, if successfully turned into 
insulin-secreting beta cells, could be the source of cell 
therapy. So there are at least three reasons.
    Senator Lautenberg. Thank you very much. Thank you, Madam 
Chairman.
    Chairman Collins. Thank you, and thank you, Dr. Spiegel, 
for putting that on the record.
    I want to thank this panel for your excellent testimony. 
Senator Lautenberg is right. I think it would benefit all of 
our colleagues to hear it. I know that many are watching from 
their offices, but his idea of sending around a tape is an 
excellent one, and we will follow up on that. But thank you so 
much for being here and for your eloquent testimony. Thank you.
    [Applause.]
    Our next panel of witnesses this morning consists of 
children who know firsthand the burden of living with diabetes. 
Our witnesses on this panel are Stephanie Rothweiler of 
Falmouth, Maine; Ethan Falla of New Britain, Connecticut; Aaron 
and Shaynah Jones of Piscataway, New Jersey; Ellie Clark of 
Grandville, Michigan, accompanied by her mother, Katie; and 
Lauren Stanford of Plymouth, Massachusetts, who is the Co-Chair 
for the children at this year's Congress.
    All of the members of this panel are delegates to the 
Juvenile Diabetes Research Foundation's Children's Congress. 
Other delegates, I want to point out, are seated right before 
us and also are throughout the room. We welcome all of them 
here today.
    Now, two of my colleagues have very important constituents 
who are testifying before us on this panel, so first, I want to 
turn to the distinguished Ranking Member, Senator Lieberman, so 
that he can welcome our witness from Connecticut.
    Senator Lieberman. Thanks, Madam Chairman. I will be brief 
since I welcomed him in my opening statement. Ethan Falla is 
just an adorable red-headed kid from New Britain, Connecticut. 
He is a member of the school Honor Society, very active in 
sports, and as I mentioned, an accomplished Irish dancer.
    Ethan, thanks so much for coming today, and I hope during 
your testimony you will share with everyone here today your 
poem about diabetes. That would be very important for everyone 
to hear. God bless you. You look great and you have a great 
future ahead of you.
    Chairman Collins. Thank you very much, Senator Lieberman.
    And now, I would like to turn to Senator Lautenberg so he 
can have the privilege of introducing his constituent, as well.
    Senator Lautenberg. It is a privilege, indeed. I would say 
that, in response, Senator Lieberman always says the right 
thing, and he talks about how terrific Ethan is. But I want you 
to look at Shaynah and Aaron, and I will tell you that you 
would not see a more handsome, full of life pair of young 
people. I can't help but look at all of the young people out 
there, including little Ellie, and all of the children. They 
stimulate something in our souls and our hearts that tells us 
we have to do something about this.
    And I am particularly grateful to Shaynah, who is 13 years 
old, diagnosed with juvenile diabetes 2 years ago, and Aaron, 
10, diagnosed 5 years ago. It is a burden on their families, a 
burden on themselves, but they are two happy children with 
interests like any other child--sports, school band, video 
games--but their lives, as we have heard from so many, are 
affected every day by diabetes. But I hope you heard Gary 
Hall's message, too, and that is he went on to become this 
great swimmer after he was diagnosed with diabetes. So whatever 
your plans are, keep going, Shaynah and Aaron. I look forward 
to hearing your stories. Thanks for sharing them with us, and 
thank you, Madam Chairman.
    Chairman Collins. Thank you, Senator.
    Steffi, as I told you yesterday in my office, you get to go 
first. That is not only because I was so impressed with you 
yesterday when we met, but it is because I am the Chairman. 
[Laughter.]
    And thus, I get to pick the person, and I am picking my 
constituent. So Steffi, take it away.

 TESTIMONY OF STEPHANIE ROTHWEILER,\1\ DELEGATE (AGE 11), JDRF 
              CHILDREN'S CONGRESS, FALMOUTH, MAINE

    Ms. Rothweiler. Good morning, Senator Collins and Members 
of the Committee. My name is Stephanie Rothweiler. I am 11 
years old and live in Falmouth, Maine.
---------------------------------------------------------------------------
    \1\ The prepared statement of Ms. Rothweiler appears in the 
Appendix on page 58.
---------------------------------------------------------------------------
    These days, all I hear is, ``Steffi, what is your blood 
sugar?'' or ``Steffi, how much insulin are you going to give 
yourself?'' Well, I wasn't always this way. I got diabetes when 
I was 5\1/2\. It was a week before Christmas in 1999. 
Thankfully, my family and I caught it early. Once you saw me, 
it wasn't hard to see that I was really sick. I had dark 
circles around my eyes, I had lost a lot of weight, and I 
looked like a twig. I was also always really tired, thirsty, 
and I couldn't stop going to the bathroom.
    Let me tell you about my typical day living with diabetes. 
When I wake up, the first thing I do is check my blood. If it 
is out of range, that determines what I can eat for breakfast. 
When I am at school, I call the nurse three times a day--at 
snack, lunch, and before I go home--to report my blood sugar 
numbers. I also have to carry a blood testing meter with me at 
all times. On school trips, one of my parents has to come with 
me and if that is not possible, one of the school nurses has to 
go. My friends have learned what to do if I should become 
unconscious and how to help me.
    Eating is a big problem. If my blood sugars are too high, I 
can't eat with my family and have to wait 20 to 30 minutes for 
the insulin to work. I am very active with tennis, Irish 
dancing, and softball. My whole family has learned how to count 
carbohydrates, know their glycemic index, and evaluate the 
impact of my exercise on my blood sugar levels. Every day, at 
every meal, activity, and during the night, my parents are 
calculating and projecting my blood sugar levels to keep me in 
good control.
    At first, I thought diabetes was like a cold and that it 
would be gone in a week or so. Little did I know I would have 
it the rest of my life. I actually can't remember having a 
normal life without diabetes.
    I have learned a lot about life that I may not have learned 
if I did not have this disease. One thing I have learned is how 
fortunate I was to have caught the diabetes early. I also know 
how lucky I am to have parents who give up their nights, 
weekends, and every hour of every day to take care of me and to 
make sure I stay in tight control of my blood sugar levels so I 
can stay as healthy as possible. I am also very lucky to have 
access to the best technologies. I wear an insulin pump, which 
makes it easier to stay in good control.
    I know it is possible to find a cure. I think about all of 
the miraculous advances that have occurred in our time, and I 
know that a cure will only come from research. So I ask each 
Member of this Committee and every Member of Congress to do all 
they can do--to do all they can to support this promising 
research that will one day bring us a cure as quickly as 
possible.
    Senator Collins, I owe you a special thanks for all you 
have done to support the research and policies to bring us 
closer to finding a cure for diabetes. I am also very lucky you 
are my Senator.
    I can't remember my life without diabetes, but I can 
certainly imagine how wonderful it would be to live without it.
    Chairman Collins. Thank you so much, Steffi. That was just 
great. Let us give a round of applause for Steffi.
    [Applause.]
    Ethan, you are next.

TESTIMONY OF ETHAN FALLA,\1\ DELEGATE (AGE 13), JDRF CHILDREN'S 
               CONGRESS, NEW BRITAIN, CONNECTICUT

    Mr. Falla. Hi. My name is Ethan Falla. I live in New 
Britain, Connecticut. I am 13 years old, and I am like most 
other boys my age. I love to play sports, ride my bike, play 
video games, and I Irish dance. The difference between me and 
all my friends is that I have juvenile diabetes.
---------------------------------------------------------------------------
    \1\ The prepared statement of Mr. Falla appears in the Appendix on 
page 60.
---------------------------------------------------------------------------
    I have a really good memory and I can remember things most 
people forget. I can remember when I was 3--like it was 
yesterday. Sometimes I wish I could forget certain times in my 
life, like the day that I was diagnosed with diabetes. I was 
really afraid of the shots and the way that everyone acted. My 
mom couldn't stop crying and my dad looked really worried. I 
remember running behind the couch to hide from my mom and dad 
when they had to check my blood sugar or give me insulin. Those 
days were the hardest. One night when I was 4, I told my dad 
that by the time I was 16, there would be a cure for diabetes. 
Well, that only leaves 3 years for us to find a cure.
    The reality of diabetes really hit home for me 2 years ago 
when my little brother, Aiden, was diagnosed with diabetes. I 
felt really bad because I thought it was all my fault. I cried 
the whole time he was in the hospital. I just couldn't imagine 
him having to go through all the finger sticks and shots, too. 
He was only 10 months old and it wasn't fair. Although I worry 
about myself, I worry more about my little brother, Aiden, 
because he is so little and so many things can go wrong.
    The dream I have for me, my brother, all the kids in this 
room, and all the other children around the world who have 
diabetes is simple. At night, I dream of a world where we don't 
have to count carbohydrates or we don't have to prick our 
fingers and give ourselves insulin shots, or we don't have to 
worry every day about the complications of diabetes, a world 
where we could just be kids, free from diabetes.
    Research foundations like JDRF are working hard to make 
that dream become a reality with support from Congress. If we 
all work together to find a cure, it will happen. Together, we 
will be known as the people who cured diabetes.
    Chairman Collins. Thank you, Ethan.
    [Applause.]
    Aaron, we are delighted to have you and your sister here, 
too.

TESTIMONY OF AARON JONES,\1\ DELEGATE (AGE 10), JDRF CHILDREN'S 
                CONGRESS, PISCATAWAY, NEW JERSEY

    Mr. Jones. Good morning. My name is Aaron Jones, and I am 
10 years old. I was diagnosed with juvenile diabetes when I was 
four. I have been living with this disease for 6 years. My 
older sister, Shaynah, has just been diagnosed, too.
---------------------------------------------------------------------------
    \1\ The prepared statement of Mr. Jones appears in the Appendix on 
page 62.
---------------------------------------------------------------------------
    My mom doesn't know how or why we both got juvenile 
diabetes because we are the only ones in our family who have 
it. Even though I am younger than Shaynah, sometimes I feel 
like her big brother because every time she needs help 
understanding her diabetes, I tell her what I know. Shaynah 
gets nervous because she knows that I sometimes have seizures 
because of my diabetes and she doesn't want to get them, too. 
We also both worry about our older brother, Justin, and our 
younger sister, Kara, worry that they may get this disease, 
too.
    Living with diabetes is the pits. I live with it because I 
have to. The part I really don't like is taking insulin shots 
and always checking my blood sugar. It can be painful 
sometimes. I just don't feel like doing it. I also feel awful 
and tired when my blood sugars get too high or very low. I just 
want to feel like a normal kid without pricking my fingers 
2,000 times each year or injecting myself with insulin 1,100 
times a year.
    Finding a cure is what keeps me smiling every day. Please 
help us find a cure in time to help me and my sister, Shaynah, 
and all the other kids who never get a day off from diabetes.
    Chairman Collins. Thank you very much. Good job.
    [Applause.]
    Shaynah, we are delighted to have you here, too.

    TESTIMONY OF SHAYNAH JONES,\2\ DELEGATE (AGE 13), JDRF 
          CHILDREN'S CONGRESS, PISCATAWAY, NEW JERSEY

    Ms. Jones. I am Shaynah Jones, Aaron's older sister. I am 
13 years old, and I have had diabetes for 2 years now. Having 
two kids with diabetes in one family really takes a toll on 
everyone.
---------------------------------------------------------------------------
    \2\ The prepared statement of Ms. Jones appears in the Appendix on 
page 63.
---------------------------------------------------------------------------
    For Aaron and me, managing our diabetes takes a lot of time 
away from our family. If we are with our family at a function, 
we have to stop what we are doing to check blood sugars or go 
somewhere to inject insulin. If there is a high or low blood 
sugar with one of us, then sometimes we have to cancel what we 
are doing so our parents can take care of us, especially for 
Aaron. If he goes too low, he can have a seizure, and that can 
be a real emergency.
    The emotional stress of this disease is horrible for our 
entire family. If one of our blood sugars is out of control, it 
seems like the whole family is holding their breath until we 
get it back in line. If we misplace one of our meters, my mom 
gets upset because the numbers might not be right for the 
doctor. It can become difficult because we are stressed out all 
the time, worrying about whether we have everything relating to 
our diabetes in order, not to mention that we are worrying 
about just being kids.
    Diabetes is so rough on my whole family. It is a heartache 
and heartbreak every day. Still and all, we wake up every 
morning grateful for a new day and with a positive outlook on 
life. We are not giving up.
    Chairman Collins. Thank you. Very good job.
    [Applause.]
    Katie, it is my understanding that you are going to speak 
for Ellie, so thank you.

TESTIMONY OF KATIE CLARK,\1\ MOTHER, ON BEHALF OF ELLIE CLARK, 
    DELEGATE (AGE 4), JDRF CHILDREN'S CONGRESS, GRANDVILLE, 
                            MICHIGAN

    Ms. Katie Clark. My name is Katie Clark. Most people know 
me as Ellie Clark's mom. Ellie will be 5 next month. She is a 
sweet little girl who has been barraged since birth with 
complete strangers touching her blonde curly hair. We thought 
that was going to be her burden to bear. We were wrong.
---------------------------------------------------------------------------
    \1\ The prepared statement of Ms. Clark appears in the Appendix on 
page 64.
---------------------------------------------------------------------------
    Ellie was diagnosed with juvenile diabetes last year. To be 
exact, we found out at 4:45 p.m. on August 30. We had spent 
weeks denying the symptoms, and with those words every parent 
here will tell you devastated them, ``There is glucose in her 
urine,'' our lives were turned upside down. She was diagnosed 
on what was supposed to be her first day at a new preschool. We 
spent my 30th birthday at the hospital and got through the 
denial in a few hours, which most say is really fast. I spent a 
better part of the next 2 weeks in a depression. I was also 
very angry. Anger is not the most common emotion at the very 
beginning. However, we are not new to this disease. I have had 
juvenile diabetes for 28 years.
    It has only been 10 months. Ellie has callouses on her 
fingers. Her bottom has scar tissue from her insulin pump site 
changes. She has had 1,494 finger pokes. Her blood has been 
drawn five times, with two nurses holding her down and one 
drawing the blood. She has had 98 pump site changes. It has 
only been 10 months.
    All I want is to give her back the life she was living 
before August 30 and a future brighter than one clouded by 
diabetes. I would give everything I have, even my own life, for 
Ellie not to have to endure another day of this dreadful 
disease.
    One of the hardest things for me is knowing firsthand the 
challenges that Ellie is going to face as she grows up. Fifteen 
years--that is how much less of a life span Ellie and I have 
been dealt. And disease is something that affects every detail 
of every day of your life. It is not only about the finger 
pokes or the worry about whether you have enough supplies or 
when our next meal will be. The happiest days of my life have 
been clouded by diabetes, details the average person wouldn't 
ever think about.
    I had an insulin reaction on my wedding day. And not only 
did my hair get messed up, but I ended up with orange juice on 
my wedding veil. For each of my pregnancies, I saw a high-risk 
OB once a week. In the 4 months leading up to their births, I 
saw them twice a week. In labor, I was forced to check my blood 
sugar every hour, and after birth, the nurses whisked my 
newborns away to check their blood sugar and force a tube down 
their throat to force glucose into their stomachs because their 
bodies were used to producing too much insulin. This is not the 
life I have dreamed of for Ellie.
    The worst part of diabetes and the biggest impact it has 
had on my life is when Ellie is getting tucked into bed at 
night. That is when she asks the questions that are 
unanswerable, like, ``Mommy, why do some people get diabetes 
and some people don't?'' Or she says things like, ``Daddy, I 
don't want diabetes anymore.'' This is when I realize we must 
do everything we can to find a cure for this disease. My sweet 
little girl with the blonde curls deserves it.
    Chairman Collins. Thank you.
    [Applause.]
    Lauren, we are pleased to have you here today.

   TESTIMONY OF LAUREN STANFORD,\1\ DELEGATE (AGE 13), JDRF 
          CHILDREN'S CONGRESS, PLYMOUTH, MASSACHUSETTS

    Ms. Stanford. Good morning. My name is Lauren Stanford. I 
am 13 years old, and I live in Plymouth, Massachusetts. I have 
had diabetes for 8 years now.
---------------------------------------------------------------------------
    \1\ The prepared statement of Ms. Stanford appears in the Appendix 
on page 66.
---------------------------------------------------------------------------
    Before I tell you about my story, I want you to think about 
something. In this room right now, you see 150 kids with 
juvenile diabetes. That is 150 pairs of hands. Consider that, 
on average, each of these kids needs to prick their finger and 
draw blood for a glucose test six times a day. Add to that the 
fact that we have each had juvenile diabetes for an average of 
5 years. If you do the math, you will see that this means that 
there are 150 pairs of hands that prick their fingers more than 
1.5 million times and have spent over $2 million on just their 
test strips. If you look out into this hearing room, you will 
see the evidence of the 1.5 million times that diabetes has 
invaded a life. And we are just a snapshot of the millions of 
kids who suffer with diabetes. So take my story that I am about 
to share with you and multiply it just like we did those finger 
pricks and you will begin to understand the toll this disease 
takes on our world.
    My story is about always working to win and finding out 
that with diabetes, in the end, you can almost never beat it. I 
am an ``A'' student. I compete on a swim and tennis team, and I 
am an expert skier. That is because I expect the best from 
myself. For 7 years, it was the same with my diabetes. I was a 
model patient.
    But last fall, something happened. I got incredibly sick of 
it. I wanted so bad to be like my other teenage friends, who 
were free to worry about nothing more than boys, movies, and 
fun. I wanted to buy a Slushie without having to do algebra. So 
I started to lie to my parents, skipping blood checks and 
making up numbers. It got worse, and pretty soon, I was 
skipping insulin doses, too. I knew I was in trouble, but I 
couldn't stop. I would go to bed at night and say, tomorrow 
will be a new day. I will try hard and everything will be fine. 
But the next morning, I just couldn't get back to my life with 
diabetes. I was sick, but in a strange way, I felt free. So I 
kept lying and not taking care of myself. On October 30, a day 
before Halloween, I collapsed and was rushed to Children's 
Hospital in Boston where I was put in the intensive care unit. 
I almost died. Diabetes almost got me.
    You might ask what would make a smart girl do such a stupid 
thing. I was completely burned out on diabetes. I felt like I 
had been through a medical appointment every few hours for the 
past 7 years and I just couldn't stand the endlessness of it 
anymore. It seems like as hard as I tried, there were always 
days where I was high or low. I couldn't be perfect.
    I know now that this is not the way to win this battle. I 
have made myself a vow to be brave and not to give into this 
unforgiving disease, and I ask you Members of Congress to do 
the same. When it is tough to make a decision about supporting 
additional funding for diabetes research or expanding the 
current stem cell policy, think of me and all the kids in this 
room today. Don't give in because it is hard. Rather, like I 
had to do, face the hard work and difficult decisions that will 
lead me, the kids in this room, and all the millions of people 
around the world to a cure for diabetes. That is the only way 
we will win this battle, with your help. We kids cannot beat it 
on our own. We need you and your support.
    Chairman Collins. Thank you.
    [Applause.]
    I have to tell all of you who have just testified that all 
of us hear a lot of witnesses, hundreds and thousands of 
witnesses over the years that we have been Senators, but I 
don't think we have ever had a more compelling, persuasive 
group of witnesses than the panel we have just heard. So I want 
to thank each of you for telling your story. Thank you.
    [Applause.]
    It is so touching and moving, and I think if all of you go 
and meet with your Senators, meet with your Members of 
Congress, and tell them your eloquent personal stories just as 
we have heard today, you will make such a difference. You will 
help all of us make the case for more research and for passing 
the stem cell bill because more research, including stem cell 
research, is the answer. It is the answer to this awful 
disease. And hearing your stories just makes me want to work 
all the harder to bring that about. I am going to redouble my 
personal commitment just because of what I have heard today.
    And Steffi, I know that you have worked hard in Maine to 
help people be more aware of juvenile diabetes and the need for 
support. Could you tell us a little bit about Steffi's Stompers 
and the money that you have raised?
    Ms. Rothweiler. Sure. Every year, we do a walk around Back 
Bay, and I have a team called Steffi's Stompers. I get a bunch 
of my friends and tell them that it is to raise money to help 
find a cure for diabetes. And my friends are more like my 
family to me, so they gladly give up part of their allowance or 
part of their savings, and they give it to me to give to the 
research foundations. Over the past 4 years, my team has raised 
over $75,000 to go to stem cell research.
    Chairman Collins. Wow. That is fabulous.
    [Applause.]
    That is great. Senator Lieberman.
    Senator Lieberman. Thanks so much, Madam Chairman. I agree 
with what you said about the extraordinary testimony of these 
witnesses.
    Shaynah, I don't know if anybody has ever told you, but 
your first name means something in another language, Yiddish. 
Shaynah means beautiful. You and all the other witnesses before 
us are beautiful, not just in your physical appearance, but in 
your inner strength and your soul. You have been given a 
problem and you are dealing with it and to the best extent 
possible, you are living lives as normal as you possibly can. I 
find your testimony to be occasionally heartbreaking, but in 
the end, inspirational.
    Somebody said to me once in my life when I had had a real 
disappointment, a real problem, they said to me that everybody 
in the course of a life gets knocked down at some time or 
other, maybe more than once. The question is do you get back 
up? It seems to me that you are doing as much as you possibly 
can, and your testimony challenges those of us who are 
privileged to have the positions we have with the opportunity 
to bring about change that we have, to do more than we are 
doing to fund the kind of research that will give you not only 
better treatments, but cures. And to me, that begins with 
support of embryonic stem cell research. We can do that soon, 
and I hope we will.
    Ethan, you have had diabetes now for 10 years. I wonder, 
over that 10 years, has the way in which you have been treated 
or treated yourself changed? Have there been new systems or 
things that you have been told to use or been able to use?
    Mr. Falla. Yes. When I first started with diabetes, my 
parents were giving me my shots. And then when I went to 
diabetes camp, I found out about the pumps and Lantis, and so I 
got on Lantis, and after I did Lantis for a couple months, we 
signed up for a pump, and now I am using the pump.
    Senator Lieberman. And that is really working well? It is 
much better for you. That is good. Thank you. That is the kind 
of progress we have made, but there is a lot more we can and 
will do together.
    Thanks, Madam Chairman.
    Chairman Collins. Thank you. Senator Lautenberg.
    Senator Lautenberg. Thank you, Madam Chairman, and I thank 
each one of you for the message that you bring us today. It 
causes us to look inside a little more deeply and to say, what 
is our responsibility here?
    Very seldom do we have hearings with witnesses, often 
business executives or scientists, and the tears that flow from 
those hearings are tears of boredom. [Laughter.]
    And here, we have tears of affection for all of you. Katie, 
when we look at you and Ellie and hear your story, because my 
first temptation was to put my hand through her curly hair. 
[Laughter.]
    I have six little granddaughters, four grandsons, but the 
granddaughters know how to get to me. The fact is that we want 
to help, and I make a pledge to you here today that we will 
fight as hard as we can to see that there is more given to 
research in this field and to stem cell research and to ask our 
colleagues and ask, why can't we get a vote? If you could only 
hear these children, it would tell you enough to say, hey, 
listen, we find money to fight wars. We find money to defend 
ourselves against terror. There can be no greater terror in my 
mind than to find out that you have a child who has diabetes 
and what it entails in your life. So thank you. I love you all. 
Kisses.
    [Applause.]
    Chairman Collins. There certainly is no more caring, 
committed, and compassionate organization than the Juvenile 
Diabetes Research Foundation. It has been my great pleasure to 
work hand-in-hand with you during the last 8 years, and today's 
hearing reminds us that we can't rest. We cannot lift our foot 
from the accelerator. We must keep moving forward. I think that 
each person who was here today is committed to that cause.
    So I want to thank all of you for being here today, the 
parents, the advocates, the Juvenile Diabetes Research 
Foundation staff. I see so many of you that I have worked with 
throughout the past 8 years. This collaboration isn't going to 
end. We are not going to rest until we have a cure.
    My special thanks to all of the children who are here 
today. You are the best advocates possible.
    [Applause.]
    This hearing is now adjourned.
    [Whereupon, at 11:05 a.m., the Committee was adjourned.]


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