    [Senate Hearing 110-316]
    [From the U.S. Government Publishing Office]

                                                            S. Hrg. 110-316

    THE JUVENILE DIABETES RESEARCH FOUNDATION AND THE FEDERAL GOVERNMENT: A
      MODEL PUBLIC-PRIVATE PARTNERSHIP ACCELERATING RESEARCH TOWARD A CURE

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

                                    HEARING

                                   before the

                                  COMMITTEE ON
                   HOMELAND SECURITY AND GOVERNMENTAL AFFAIRS
                              UNITED STATES SENATE

                           ONE HUNDRED TENTH CONGRESS

                                 FIRST SESSION

                                   __________

                                 JUNE 19, 2007

                                   __________

            Available via http://www.access.gpo.gov/congress/senate

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

                         U.S. GOVERNMENT PRINTING OFFICE

    36-614 PDF                 WASHINGTON DC:  2008
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            COMMITTEE ON HOMELAND SECURITY AND GOVERNMENTAL AFFAIRS

                   JOSEPH I. LIEBERMAN, Connecticut, Chairman
    CARL LEVIN, Michigan                 SUSAN M. COLLINS, Maine
    DANIEL K. AKAKA, Hawaii              TED STEVENS, Alaska
    THOMAS R. CARPER, Delaware           GEORGE V. VOINOVICH, Ohio
    MARK L. PRYOR, Arkansas              NORM COLEMAN, Minnesota
    MARY L. LANDRIEU, Louisiana          TOM COBURN, Oklahoma
    BARACK OBAMA, Illinois               PETE V. DOMENICI, New Mexico
    CLAIRE McCASKILL, Missouri           JOHN WARNER, Virginia
    JON TESTER, Montana                  JOHN E. SUNUNU, New Hampshire

                      Michael L. Alexander, Staff Director
                         Aaron M. Firoved, AAAS Fellow
        Purva H. Rawal, Ph.D., Legislative Assistant, Office of Senator
                                   Lieberman
         Brandon L. Milhorn, Minority Staff Director and Chief Counsel
            Priscilla H. Hanley, Minority Professional Staff Member
                      Trina Driessnack Tyrer, Chief Clerk

                                C O N T E N T S

                                     ------
    Opening statements:
                                                                       Page
        Senator Collins..............................................     2
        Senator Lieberman............................................     3
        Senator Akaka................................................     6
        Senator Tester...............................................     7
    Prepared statement:
        Senator Levin................................................    15

                                   WITNESSES
                             Tuesday, June 19, 2007

    Mary Tyler Moore, International Chairman, Juvenile Diabetes
      Research Foundation............................................     9
    Adam Morrison, National Basketball Association Player, Charlotte
      Bobcats........................................................    11
    Griffin P. Rodgers, M.D., M.A.C.P., Director, National Institute
      of Diabetes and Digestive and Kidney Diseases, National
      Institutes of Health, U.S. Department of Health and Human
      Services.......................................................    13
    Caroline McEnery, Delegate, Age 17, JDRF Children's Congress,
      Fairfield, Connecticut.........................................    18
    Caitlin Crawford, Delegate, Age 13, JDRF Children's Congress,
      Yarmouth, Maine................................................    20
    Tre Hawkins, Delegate, Age 12, JDRF Children's Congress, Detroit,
      Michigan.......................................................    22
    Ann Strader, Mother of Abraham and Curtis Strader, Delegates, Age
      6, JDRF Children's Congress, Lakeville, Minnesota..............    23

                         Alphabetical List of Witnesses

    Crawford, Caitlin:
        Testimony....................................................    20
        Prepared statement...........................................    53
    Hawkins, Tre:
        Testimony....................................................    22
        Prepared statement...........................................    55
    McEnery, Caroline:
        Testimony....................................................    18
        Prepared statement...........................................    51
    Moore, Mary Tyler:
        Testimony....................................................     9
        Prepared statement...........................................    32
    Morrison, Adam:
        Testimony....................................................    11
        Prepared statement...........................................    35
    Rodgers, Griffin P., M.D., M.A.C.P.:
        Testimony....................................................    13
        Prepared statement...........................................    37
    Strader, Ann:
        Testimony....................................................    23
        Prepared statement...........................................    56

                                    APPENDIX

    Updated photo of device (pump and sensor) submitted by Medtronic,
      Inc............................................................    29
    Chart titled ``Type 1 Diabetes: A Slowly Progressive Autoimmune
      Illness,'' submitted by Dr. Rodgers............................    30
    Photo titled ``Continuous Glucose Monitoring,'' submitted by Dr.
      Rodgers........................................................    31
    Questions and responses for the Record from Dr. Rodgers..........    59

                      THE JUVENILE DIABETES RESEARCH FOUN-
                       DATION AND THE FEDERAL GOVERNMENT:
                       A MODEL PUBLIC-PRIVATE PARTNERSHIP
                      ACCELERATING RESEARCH TOWARD A CURE

                                  ----------

                             TUESDAY, JUNE 19, 2007

                                           U.S. Senate,
                               Committee on Homeland Security
                                      and Governmental Affairs,
                                                        Washington, DC.
        The Committee met, pursuant to notice, at 9:30 a.m., in
    room SD-106, Dirksen Senate Office Building, Hon. Joseph I.
    Lieberman, Chairman of the Committee, presiding.
        Present: Senators Lieberman, Levin, Akaka, Tester, and
    Collins.
        Chairman Lieberman. Good morning.
        Well, I must say, of all the hearings that I have had the
    honor to convene, this is the most beautiful group of people in
    front of me that I have ever seen. So welcome this morning.
        I am Senator Joe Lieberman, and it is my honor to be the
    Chairman of this Committee this year. I want to welcome our
    witnesses to this hearing of the fifth Children's Congress
    organized by the Juvenile Diabetes Research Foundation.
        Senator Susan Collins is the Ranking Member of this
    Committee. For years, she was the Chairman, and as we said, in
    the roll of the dice or the twist of fate or whatever it is, it
    turned out that I have the title of Chairman this year, but
    nothing has changed in our partnership in this Committee other
    than our titles. She is an extraordinary person, and I am
    really honored to work with her.
        Senator Collins has taken a particular interest in juvenile
    diabetes and chaired four similar hearings that have focused on
    breakthroughs in research, the partnership between the JDRF and
    the National Institutes of Health, and the challenges in
    developing effective treatments and a cure for juvenile
    diabetes.
        First off, I do want to say before I turn the gavel over to
    her that I am very sorry that she got the memo that we were
    supposed to wear yellow today. [Laughter.]
        And I didn't get it, but there is a very little bit of
    yellow in my multi-colored tie.
        Anyway, to recognize and really honor Senator Collins'
    superb and important leadership on this important public health
    challenge, I am going to turn the gavel over to her. I look
    forward to her opening statement. If she so chooses with the
    gavel in her hand, I will then make an opening statement. But
    then she will Chair the hearing. Senator Collins.

                  OPENING STATEMENT OF SENATOR COLLINS

        Senator Collins. Thank you very much, Senator Lieberman. It
    is really nice to have the gavel back, even if it is just for
    this one hearing. But it is typically gracious of you that when
    I asked you if I could Chair today in view of my longstanding
    interest in this issue, you didn't hesitate. You immediately
    acceded to my request, and I am very grateful for that.
        As you mentioned, this is the fourth Juvenile Diabetes
    Research Foundation Children's Congress that I have had the
    honor to Chair, and I am very grateful for your leadership, as
    well. I know that there is a delegate from Connecticut here
    today.
        I also want to welcome all of our distinguished witnesses,
    but most of all, I want to welcome all the children who have
    joined us today.
        It is just wonderful to have you here. Now, have any of you
    been to Washington before? A few of you have--quite a few of
    you have. Well, then you know it is very unusual for us to have
    children come to our hearings, much less testify. But it is
    important that children are here from all over the country and
    indeed around the world to tell Congress just what it is like
    to have diabetes, how serious it is, and how important it is
    that we fund the research necessary to find a cure.
        I want to give a special welcome to the delegate from
    Maine, 13-year-old Caitlin Crawford, who will be testifying on
    the second panel today.
        As the founder and the Co-Chair of the Senate Diabetes
    Caucus, I have learned a lot about the disease and the
    difficulties and the heartbreak that it causes for so many
    American families as you await a cure. Diabetes is a lifelong
    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 and that
    health spending for people with diabetes is almost double what
    it would be if they did not have diabetes.
        These statistics are truly overwhelming, but what really
    motivates me to devote so much energy to this issue is meeting
    more and more people like our delegates today and their
    families whose lives have been changed forever by diabetes, and
    that is why it so important that you have all traveled here to
    tell your stories. You put human faces on all of those
    statistics. You can teach us what Congress can do to help us
    better understand and ultimately conquer this terrible disease.
        The burden of diabetes is particularly heavy for children
    and young adults with type 1, or juvenile diabetes. It is the
    second most common chronic disease affecting children.
    Moreover, it is one that you never outgrow.
        People ask me all the time why I am so interested in
    juvenile diabetes. They ask, do I have a family member who is
    afflicted with it, and I do not. What got me interested was a
    meeting that I had when I became a new Senator back in 1997
    with JDRF members in Maine. They came into my office, and I
    will never forget this 10-year-old boy who told me that all he
    wanted was to take one day off from his diabetes.
        But I realize that even if it is your birthday, or
    Christmas, or another holiday, you can't take a day off from
    diabetes, and the average child with diabetes will have to take
    more than 50,000 insulin shots in a lifetime.
        While the discovery of insulin was a landmark breakthrough
    in the treatment of diabetes, it is not a cure. Thankfully,
    there is much good news for us to report today. Since I founded
    the Senate Diabetes Caucus in 1997, funding for diabetes
    research has more than tripled, so it is now up to about $1
    billion. As a consequence, we have seen some encouraging
    breakthroughs, and we are on the threshold of a number of
    important new discoveries, as Mary Tyler Moore and I were
    discussing briefly this morning.
        For example, a new drug that has been tested in clinical
    trials has been shown to have the possibility of stabilizing or
    even reversing the progression of type 1 diabetes,
    demonstrating for the first time that the clinical course of
    the disease can be altered.
        Advances in technology, like continuous glucose sensors,
    are helping people better control their blood glucose levels,
    and that is key to preventing diabetes complications. These
    advances are also moving us closer to the long-term goal of an
    artificial pancreas, and drugs originally designed for cancer
    therapy are showing tremendous potential for treating diabetic
    eye disease.
        Now, we are making progress, but now is no time to take our
    foot off the accelerator. We basically have two choices. We can
    sit back and continue to pay the bills and endure the
    suffering, or we can aggressively pursue a national strategy
    aimed at curing this terrible disease.
        In August 2006, the National Institutes of Health released
    a report called ``Advances and Emerging Opportunities in Type 1
    Diabetes Research: A Strategic Plan.'' It charts a course that
    we must take. The Juvenile Diabetes Research Foundation has
    brought together leading researchers and economists who
    estimate just how much it would cost to fully fund the research
    opportunities identified in this landmark report. The estimate
    is that it would cost approximately $557 million in 2009,
    rising to about $1.2 billion in 2013. Clearly, we have our work
    cut out for us, but we can do it.
        The good news is that there is strong support in Congress
    for increasing funding for diabetes research, including Senator
    Lieberman's strong support. Last month, 64 senators joined me
    in sending a letter to the Senate leadership urging increased
    funding for type 1 diabetes to accelerate our race to a cure.
        And I am hopeful that this morning's hearing, plus all of
    the visits that you are doing with senators all over the Hill,
    will help to build on that support and give us the momentum we
    need for increased research funding to find better treatments,
    a means of prevention, and, yes, ultimately, a cure.
        Thank you, Mr. Chairman. I am delighted to call on you for
    your statement.

                OPENING STATEMENT OF CHAIRMAN LIEBERMAN

        Chairman Lieberman. Well, thank you, Madam Chairman, for
    that excellent statement.
        Let me welcome everyone here and particularly give a
    special welcome to Caroline McEnery from my home State of
    Connecticut, who is going to share her story with us today.
    Also, her fellow nutmeggers, which is what we call people from
    Connecticut--it is too long a story to tell. [Laughter.]
        Or maybe the more familiar today--if you follow UConn men
    or women's basketball--we say fellow Huskies Aiden Falla,
    Amanda Rossi, and Sedrick Trotman, with whom I look forward to
    meeting after this hearing.
        And let me just add an exclamation point to what Senator
    Collins has said to thank you for coming and to tell each of
    you, particularly the children here, you will be amazed at how
    important it is that you and your families have taken the time
    to be here because in your meetings with individual senators
    and members of the House of Representatives, you will educate,
    you will motivate, and you will move us to getting the things
    done that we want to get done.
        Probably you have all heard the story of the discovery of
    insulin, but there are parts of it that I love to tell, and I
    tell it because it is a hopeful story. Obviously, before that,
    diabetes really was a dreadful disease. In the winter of 1921--
    that is a long time ago in a child's life, but in the span of
    history, when we think of how long people have had diabetes, it
    is fairly recent--1921, following months of experiments and
    tests, a doctor from Canada, right to the north of us,
    Frederick Banting, and a team of researchers announced that
    they had successfully lowered the blood sugar in dogs that had
    diabetes that they were experimenting with and that led to the
    new--that was their breakthrough of insulin therapy. The news
    flashed around the world, not as quickly as it does today
    through the Internet, but it went around the world, bringing
    hope to millions.
        And it is a wonderful story that in an extraordinary
    display of compassion, the Banting research team walked away
    from the fortune, the monetary fortune their discovery would
    have earned them selling the production rights to insulin for a
    mere dollar.
        The idea that led to the discovery of insulin--this will be
    an interesting little story for you and your parents, I hope--
    occurred to Dr. Banting as he was getting ready for bed one
    night following a long day's work on unrelated research,
    unrelated to the problem of diabetes. Eventually, he won a
    Nobel Prize for his discovery because that night, he scribbled
    the idea that he had before he went to bed into his notebook
    which he kept by the side of his bed. So keep a notebook by the
    side of your bed, kids, for those big ideas. And later, he
    would say--this is particularly important for those of us who
    are senators to hear--no one has ever had a really great idea
    while wearing a suit. [Laughter.]
        I don't know, we may have to consider--all right.
        So obviously, since the discovery of insulin, we have made
    extraordinary progress, as Senator Collins described, in
    managing diabetes. But when it comes to children's diabetes,
    obviously, our understanding of the cause and the cure is not
    yet within our grasp, though I would say, based on the
    tremendous advance of medical science, that it is definitely
    within our reach, and Dr. Banting's late-night revelation
    should really fill us with hope that there are researchers out
    there today, tonight, who are going to have similar discoveries
    that will advance the cause.
        That is why it is so important to support the work of the
    Juvenile Diabetes Research Foundation. The numbers speak for
    themselves. I am just going to mention these numbers to talk
    about the societal significance here. Nearly 21 million
    Americans have diabetes, and about 1.5 million new cases are
    diagnosed each year. The remarkable story in response is that
    over the last three decades, JDRF has raised and provided more
    than $1 billion for juvenile diabetes research, and there is a
    great partnership between JDRF and NIH in moving this research
    forward. The bottom line here is we have come a long way, but
    we have a long way to go, and that is why your presence here
    today is so important.
        When I come to a subject like this and I think of Dr.
    Banting and all the advances in the treatment and managing of
    diabetes that Senator Collins referred to, I think of this.
    There are a lot of reasons, I suppose, people have in the world
    today for being upset or depressed, but a lot of those
    unfortunately are true, world events, I mean. But when you look
    at the incredible advances in technology and medical science
    and you think of the things that you are going to see during
    your lifetime, that I have seen in my lifetime that I never
    would have dreamed--I am still kind of amazed that I can pick
    up this little piece of plastic and send an e-mail to somebody
    halfway around the world and hear back in about four seconds,
    not to mention the extraordinary advances in treating and
    curing diseases that people never dreamed would be so well
    treated and cured.
        So let us go forward, understanding that JDRF does
    tremendous work. NIH has done tremendous work. They have been
    flat-funded lately overall, and that is not good. So a lot of
    us, Senator Collins, Senator Akaka, and I are going to be
    working to increase funding, particularly for juvenile diabetes
    research.
        I know you will inform us. I know you will leave us with
    hope, and I hope you leave here with even more hope than you
    came with.
        Thank you very much, Senator Collins.
        Senator Collins. Thank you, Senator.
        I want to thank Senator Akaka and Senator Tester for
    joining us also today.
        Leading off our first panel this morning, I am pleased to
    welcome once again Mary Tyler Moore to the Committee. She is
    very well known for her work in film and television, but she is
    well known to anyone whose life has been touched by diabetes
    for serving as the International Chairman of the Juvenile
    Diabetes Research Foundation. It has been my great pleasure to
    work very closely with her over the years. I admire her
    advocacy enormously, and we have a shared goal of finding a
    cure for this devastating disease. So Ms. Moore, it is a great
    honor to welcome you back today.
        Next, we are going to hear from Adam Morrison, an all-
    American basketball player in college. Adam now plays for the
    Charlotte Bobcats and this past season finished second in
    scoring among all NBA rookies. He was diagnosed with type 1
    diabetes when he was 14, and he is going to tell us about the
    special challenges he faces as he continues managing his
    diabetes while pursuing a successful professional basketball
    career. And I know that the children here are going to be
    really interested because they are very active in sports, as
    well.
        And last but certainly not least, we will hear from Dr.
    Griffin Rodgers, who is the Director of the National Institute
    of Diabetes and Digestive and Kidney Diseases at the NIH. Dr.
    Rodgers will highlight the advances and opportunities in
    research and will provide some examples of research that is
    supported by the Special Diabetes Program, and we are pleased
    to welcome you, as well.
        It is my understanding that Senator Akaka has a brief
    opening statement that he wants to give, and I will call on
    Senator Tester, as well. Because the children are on a
    schedule, I will ask the statements to be brief. Senator Akaka.

                   OPENING STATEMENT OF SENATOR AKAKA

        Senator Akaka. Thank you very much, Madam Chairman, and I
    want to add my welcome to all of you, our witnesses, the
    parents who are here, and, of course, our distinguished young
    people who are here.
        I really appreciate your coming here, and I also appreciate
    the leadership of Senator Collins, who for many years now has
    led this important effort here in the Senate.
        Diabetes is a significant health problem in my home State
    of Hawaii. Many people like to think of Hawaii as a place where
    we don't have it, but we do. An estimated 100,000 people in
    Hawaii have diabetes. Diabetes is a disease that
    disproportionately affects Native Hawaiians, Pacific Islanders,
    and Asian Americans. Native Hawaiians, Japanese, and Filipino
    adults living in Hawaii are twice as likely to be diagnosed
    with diabetes as compared to Caucasian residents.
        Diabetes is extremely difficult for patients to manage, as
    you well know. However, there are some promising research
    efforts underway, which we will learn more about today. We must
    continue to increase the funding for diabetes research to
    develop improved methods to treat, manage, and prevent
    diabetes. We must also enact meaningful stem cell legislation,
    as well, and we must allow researchers like Dr. Rodgers to be
    involved in ethical, federally funded research projects
    intended to help individuals suffering from a wide range of
    diseases, including diabetes.
        I look forward to hearing the testimony from our witnesses
    today who will share their experiences of overcoming diabetes.
    I am pleased that one of my constituents is here with us today,
    and I would like to welcome her.
        Natasha Garcia has been working with the Hawaii State
    Legislature on diabetes-related issues, and now she is here
    talking to the U.S. Senate about this disease. We are so happy
    to have you. Will you hold your hand up, Natasha? Thank you
    very much for being here.
        And also, I want to say hello to your dad, Leo Garcia, who
    is in the audience. Leo, thank you very much for being here,
    and I was going to tell you, if you don't know who he is, look
    for the ``aloha'' shirt. [Laughter.]
        The challenges faced by all of the children here remind us
    of the tremendous importance of our work here in Washington,
    DC.
        I also want to thank our witnesses, Mary Tyler Moore, and
    the Juvenile Diabetes Research Foundation for all of their
    efforts to improve the lives of so many people.
        In addition, I appreciate Adam Morrison for joining us
    today and serving as a role model for our children by
    overcoming the challenges presented by diabetes, as well as Dr.
    Rodgers. I want to wish you well in your efforts at NIH. As you
    know, we try very hard to make sure you are well funded. So
    thank you very much for being here.
        Thank you, Madam Chairman. I ask that my full statement be
    included in the record.
        [The prepared statement of Senator Akaka follows:]
                       OPENING STATEMENT OF SENATOR AKAKA
        Mr. Chairman, thank you for conducting today's hearing on juvenile
    diabetes. I also appreciate the leadership that the Ranking Member,
    Senator Collins, has shown on this important issue.
        Diabetes is a significant health problem in my home state of
    Hawaii. An estimated 100,000 people in Hawaii have diabetes. Diabetes
    is a disease that disproportionately affects Native Hawaiians, Pacific
    Islanders, and Asian Americans. Native Hawaiians, Japanese and Filipino
    adults living in Hawaii are twice as likely to be diagnosed with
    diabetes as compared to Caucasian residents.
        Diabetes is extremely difficult for patients to manage. Taking
    insulin injections and carefully monitoring blood sugar levels are not
    easy tasks for both 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 medical complications.
        There are some promising research efforts underway, which we will
    learn more about today. We must continue to increase the funding for
    diabetes research to develop improved methods to treat, manage, and
    prevent diabetes. We must also enact meaningful stem cell legislation.
    We must allow researchers to be involved in ethical, federally funded
    research projects intended to help individuals suffering from a wide
    range of diseases, including diabetes.
        Unfortunately, the President is expected to again veto the stem
    cell legislation. The President's restrictions on stem cell research
    prevent federal funds from being used for research on newer, more
    promising stem cell lines. This is critical because embryonic stem cell
    lines now eligible for federal funding are not genetically diverse
    enough to realize the full therapeutic potential of this research. The
    President's stem cell policy prevents researchers from moving ahead in
    an area of research that is very promising.
        I look forward to hearing the testimony from witnesses today who
    will share their experiences of overcoming diabetes. I am pleased that
    one of my constituents is with us today. Natasha Garcia has been
    actively involved in advancing diabetes-related issues in the Hawaii
    State Legislature. I also am delighted that her father, Leonardo, is
    also here today. The challenges faced by all of the children here
    remind us of the tremendous importance of our work here in Washington.
        I also want to thank Mary Tyler Moore and the Juvenile Diabetes
    Research Foundation for all of their efforts to improve the lives of so
    many people. In addition, I appreciate Adam Morrison for joining us
    today and serving as a role model for children by overcoming the
    challenges presented by diabetes.
        Again, Mr. Chairman, thank you for conducting this important
    hearing. I look forward to continuing to work with all of you to
    improve the lives of individuals suffering from diabetes.

        Senator Collins. Without objection. Senator Tester.

                  OPENING STATEMENT OF SENATOR TESTER

        Senator Tester. Thank you, Madam Chairman. I also would ask
    unanimous consent for my full statement to be put into the
    record.
        Senator Collins. Without objection
        Senator Tester. I, too, want to thank all of you for being
    here today. Especially Dr. Rodgers for your work at the
    National Institutes of Health. It is critically important we
    give you the resources necessary so you can do the kind of
    research to help a lot of folks that are in this room here
    today.
        Adam Morrison, the potential NBA star, if you are not
    already there, and a great player for Gonzaga, but few folks
    know that what really got him off on the right foot is he spent
    6 years in Glendive, Montana. We really appreciate all you have
    done to set a role model example for everybody with diabetes.
        And Mary Tyler Moore, somebody who I grew up watching on
    TV, I really appreciate all the work that you, too, have done
    for juvenile diabetes.
        And for the young people who are here sitting in front and
    out in the audience, Allison Trent from Missoula, who is one of
    the folks here, I appreciate your coming today. I think it is
    incredibly important that we, as policy makers at the Federal
    level, do things to make sure that you have the best ability to
    achieve your hopes and dreams for the future.
        Dealing with juvenile diabetes is something that a good,
    close personal friend of mine who I graduated from high school
    with was diagnosed with at the age of 12. When I talk to him,
    most of the time on a monthly basis, he is always asking me
    about how stem cell research is coming along, and I really
    think that drives it home for me that we need to take every
    avenue possible and fund every avenue possible so that our next
    generation, the reason I serve in the U.S. Senate, has the
    ability to succeed and make this country as great as it has
    been in the past.
        With that, Madam Chairman, thank you very much.
        [The prepared statement of Senator Tester follows:]
                      OPENING STATEMENT OF SENATOR TESTER
        Mr. Chairman, this is a very important hearing. I am pleased that
    Adam Morrison is here today to talk about his own experience as a
    diabetic, NBA star and most importantly a native Montanan from
    Glendive!
        As a rural state, Montana often finds itself on the fringes of
    access to information and support for numerous health care concerns,
    juvenile diabetes being one of them. I find it telling that while there
    are more than 53,000 people in Montana who have been diagnosed with
    diabetes and it is estimated that an equal number of folks across the
    state have undiagnosed diabetes, we have few statistics focused
    exclusively on juvenile diabetes. Even while we know that one out of
    every three children born since 2000 will develop diabetes during their
    lifetime, it is unclear how many of these will be diagnosed with
    juvenile diabetes.
        Type 1 or juvenile diabetes is a chronic disease that poses
    challenges for every member of the family--the young person affected
    and his or her parents as well. Thanks to new and constantly improving
    treatment options, developed by some of the organizations here today,
    children can expect to lead a full and active life, despite needing to
    receive insulin injections multiple times a day in order to remain
    healthy.
        When considering issues of access to health care in Montana, I
    always look to see how our Indian Health Service is able to serve the
    needs of the community, especially because the problem of diabetes is
    particularly acute among Native Americans.
        Therefore I am sure you can understand why I was disappointed to
    learn that the president's budget for FY 2008 would have:
        Maintained the same insufficient funding as FY 07 of $150 million
    for the Indian Health Diabetes fund, down from the $163 million granted
    in FY 06.
        And barely increased the funding for the National Institute of
    Diabetes and Digestive and Kidney Diseases, from $1.855 billion in FY
    07 to $1.858 billion for FY 08.
        As of 2002, Montana has only 14 recognized diabetes education
    programs and 60 Certified Diabetes Educators spread across our great
    State. Access to treatment, education and resources is especially
    critical in rural areas where the number of trained health
    professionals is significantly lower and spread-out than in most
    States.
        I'm looking forward to hearing about what kinds of programs will be
    developed and offered to these families as a result of this
    partnership.
        These kids and their families deserve to live full lives, so I'd
    like to know what you all are doing to follow up with folks after they
    hear about the kinds of support and treatment options that programs
    like yours open up.
        Mr. Chairman, I've taken up far too much time. I yield back.

        Senator Collins. Thank you.
        Ms. Moore, if you would proceed with your statement.

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

        Ms. Moore. Senator Collins, Senator Lieberman, I want to
    say good morning and thank you for the opportunity to be here
    with you today, along with these wonderful children.
    ---------------------------------------------------------------------------
        \1\ The prepared statement of Ms. Moore appears in the appendix on
    page 32.
    ---------------------------------------------------------------------------
        As I was preparing to come to Washington for Children's
    Congress and the hearing, I thought back to the very first
    Congress in 1999, and I will be honest with you--it was never
    my intention to appear before you 8 years later, still talking
    about the need to push forward aggressively on research toward
    a cure for type 1 diabetes.
        The good news is that we are making real progress on the
    research front. Progress resulting from the strong public-
    private partnership between JDRF and the Federal Government.
    Progress that is impacting many people with diabetes in a
    positive way right now.
        The bad news is that, for me and the children in this room,
    every day living with diabetes is a day closer to the serious
    complications from this disease. For me personally, diabetes
    has taken quite a toll. As you may know, I have been battling
    the disease for almost 40 years. That is, every minute of every
    day for 40 years. That is a long time to be constantly
    counting, measuring, calculating, and hoping that all I am
    doing to stay in good control actually works, because, you see,
    keeping your blood sugar in normal range when you have diabetes
    is difficult, even for those who are most diligent. I lost
    count long ago of the number of fingerpricks and shots that I
    have self-administered, as well as the hypoglycemia episodes
    that all who suffer from diabetes fear.
        All of us know that our hope of a cure lies in medical
    research, and that is why we all work hard to raise the dollars
    to support the best science. Yet the pace of research can be
    frustrating. It takes a long time to build the knowledge base,
    test various theories in the lab, build the necessary
    infrastructure, before we even reach the point of beginning
    clinical research. But once we reach that point, testing new
    therapies in people, the research accelerates. That is when
    hope becomes tangible, not simply an idea to hold onto.
        In type 1 diabetes research, this is happening. We have
    entered a time of opportunity, when the pace of translating
    knowledge into benefits to patients will be determined by the
    strength of our public-private partnership.
        We are taking on this challenge, and we need the Federal
    Government to do the same. Next year, JDRF will fund
    approximately $170 million of research, more in a single year
    than any time in our history and nearly three times as much as
    we were funding in 1999. But more exciting than the dollar
    amount is the type of research we are funding. In the last
    fiscal year, JDRF launched eight new clinical trials, bringing
    our total of active trials to 29, compared with five at the
    start of the year 2000.
        And the Federal Government, through your leadership Senator
    Collins, has provided critical support as well through the
    Special Diabetes Program. This program was created in 1997
    because Congress recognized that funding for type 1 diabetes
    needed to be increased significantly to capitalize on the
    opportunities that existed at that time. It reflects the
    decisions of policy makers to undertake a highly targeted,
    innovative, and clinically oriented approach to research on
    type 1 diabetes and its complications.
        As a result, the funds provided through this program have
    been deployed in a different manner than usually is the case.
    By all measures, the program is working and has delivered real
    results. It is an example of how medical research should be
    funded at the Federal level.
        That is why Congress has renewed the program twice, and the
    funding has risen to the current level of $150 million per
    year. The program has become a key component in the Federal
    Government's focus on type 1 diabetes research, and it provides
    approximately 35 percent of all Federal support for type 1
    research.
        The Special Diabetes Program has primarily supported unique
    collaborative research consortia and clinical trial networks
    focused on type 1 diabetes and its complications. Without
    support by this program, these innovative and critically
    important efforts either could not have been undertaken at all
    or not funded at a significantly optimal scale of operation.
        Think about what this means in human terms. Today, there
    are approximately 60,000 people participating in clinical
    research directly supported by this program. These are people
    whose lives are being impacted in a positive way. And because
    of this investment, the research is setting the stage for
    millions of others to benefit.
        We finally reached the bedside in our push from the
    laboratory bench. We must sustain this forward momentum and not
    allow ourselves to slip back. But this critical cure-enabling
    program is now set to expire, so we are asking Congress to
    again recognize its effectiveness and importance. Extend it for
    an additional 5 years and increase the funding to $200 million
    per year.
        Let me give you some concrete examples of research progress
    made possible by this strong public-private partnership between
    JDRF and the Federal Government. A new drug has been shown in
    human clinical trials to stabilize or reverse the immune attack
    of type 1 diabetes and, for the first time, provides evidence
    that the clinical course of the disease can be altered long-
    term. These trials are underway involving newly diagnosed
    children.
        Drugs originally designed for use in cancer therapy are
    being repositioned to treat people with both type 1 and type 2
    diabetes who suffer from diabetic eye disease, the leading
    cause of blindness in working-age adults. Results have been
    very promising.
        Advances in medical technology for continuous glucose
    monitoring have brought the field closer to realizing an
    artificial pancreas that could function much like a normal
    pancreas. A number of companies have continuous glucose sensors
    on the market, and people who are using them are able to
    achieve much tighter control of their blood glucose levels.
        The day we were diagnosed, we made a promise along with our
    parents, brothers, sisters, spouses, and loved ones to do
    whatever we could to help accelerate a cure. We are here today
    to advocate for ourselves and to ask you to make a promise to
    each of us, a promise to prevent a reduction of 35 percent in
    Federal support for type 1 diabetes research and to work hard
    to increase funding.
        Some of the young children I met during the first
    Children's Congress in 1999 have since gone on to college, away
    from their families and support systems, bringing their
    diabetes and the challenges that go along with it with them.
    They are actively living their lives, pursuing their dreams,
    and doing what they can every minute of every day to keep
    themselves healthy.
        When you hear from some of the child delegates in a few
    minutes, you will see that they are very brave and are facing
    their diabetes with the knowledge that they need to do whatever
    is in their power to help, and they are. As many of you know,
    we are a very determined bunch! We don't ask others to do what
    we haven't already challenged ourselves to do. We are here to
    remind you of the urgency of your efforts to increase research
    dollars and to show that we will continue to do our part to
    remain your partner. I am here to ask you to look into the eyes
    of these beautiful kids and show them through your actions that
    you care about their future.
        I thank you so much for this opportunity, but more
    importantly, I thank you for all that you have done and that
    you will continue to do to help those living with type 1
    diabetes. Together, I know we will get to our shared goal of a
    cure.
        Senator Collins. Thank you very much for your eloquent
    testimony.
        [Applause.]
        You can see why Mary Tyler Moore is such a powerful
    advocate, and I am so honored that once again she has started
    our hearing off. So thank you for being here.
        Mr. Morrison.

    TESTIMONY OF ADAM MORRISON,\1\ NATIONAL BASKETBALL ASSOCIATION
                       PLAYER, CHARLOTTE BOBCATS

        Mr. Morrison. Good morning. It is an honor to be here today
    to appear before this Committee to tell you about the ways
    juvenile diabetes has affected my life and the need to fund
    research so we can find a cure as soon as possible.
    ---------------------------------------------------------------------------
        \1\ The prepared statement of Mr. Morrison appears in the Appendix
    on page 35.
    ---------------------------------------------------------------------------
        First, I want to thank you, Senator Collins, for chairing
    today's hearing and your ongoing leadership in the Senate
    Diabetes Caucus.
        As you well know, my name is Adam Morrison. Basketball has
    always been a part of my life. I have been shooting hoops since
    I was 13 months old. My dad, John Morrison, coached college
    basketball in Wyoming, South Dakota, and Montana. Now I am a
    professional basketball player with the Charlotte Bobcats of
    the National Basketball Association. I was drafted in 2006
    after playing 3 years at Gonzaga University in Spokane,
    Washington. I love playing basketball. The game takes
    determination, focus, and discipline. In fact, diabetes has
    just made me more determined to make it in the NBA.
        I was diagnosed with type 1 diabetes when I was 14. My mom
    and dad knew that there was something wrong when I lost 30
    pounds in one month, and let's just say I wasn't very big. When
    I was out at basketball camp at Gonzaga, I started noticing the
    symptoms. I felt very sick, dizzy, and tired. I scored four
    points in 3 days. I couldn't do anything. I was taken to the
    hospital, where I stayed for 3 days. It was hard at first to
    understand what was happening to my body, to know that I would
    be living with diabetes for the rest of my life. The first time
    the nurse came in to give me a shot of insulin, I told her that
    I wanted to do it myself because I felt like it was part of
    what I needed to do.
        I was fortunate to be surrounded by people who gave me
    positive encouragement right from the first day of my
    diagnosis. My endocrinologist, Dr. Ken Cathcart, came into my
    room at the hospital and looked me right in the eye and told me
    that I was going to be OK and I could do anything with my life.
    Having diabetes was not going to stop me from dreaming big
    dreams. Then I just went back to being a normal kid and playing
    basketball. I didn't want to miss any time on the court.
        In my senior year of high school in Spokane, I broke
    single-season and career scoring records in my high school
    conference and led my school to the finals of the State
    tournament.
        Before I went on to the NBA, I was lucky to have the
    opportunity to reach out to other people with diabetes, like
    Chris Dudley, who played in the National Basketball Association
    for 14 years. Chris told me that, short of a cure, the one
    thing he wished for was to play one game where he didn't have
    to focus on his diabetes. That is true for me, too.
        I test my blood glucose levels every day and several times
    during games. I wonder if it is too low. It is always on my
    mind. I have to stay really disciplined to keep it all together
    when I play basketball. For example, I wait exactly 2 hours and
    15 minutes before tip-off and eat two five-ounce steaks, a
    vegetable, and a baked potato. It is the same meal before every
    game so that I can keep my glucose levels as balanced as
    possible.
        When I am not playing basketball, I wear an insulin pump
    that attaches to a small catheter in my abdomen, and like all
    the kids in this room, I have to stick my finger to test my
    blood glucose level anywhere from 10 to 12 times every day. We
    all have to calculate the number of carbohydrates we eat, the
    amount of exercise we get, and the insulin we need to take to
    keep our blood sugar level in the normal range.
        I look around this room and I see kids who are at the age
    that I was when I was diagnosed. It is when my life changed. It
    seemed like it just happened overnight, and then it changed
    forever. Our diabetes is with us every day of our lives. It
    never goes away, and we never get a time out.
        I want to be a role model for people with diabetes and show
    the 150 kids that are sitting here today that you can still do
    what you want to do. You can still be successful and have
    diabetes. It is a disease that you can't see, but you still
    have to be careful or you will have complications. You have to
    have determination. You have to continue to dream big dreams,
    but follow your doctor's advice and stay healthy.
        To the Senators in this room, I want to ask you to do
    everything in your power to help us find a cure by funding the
    best research that we possibly can have in this country. The
    insulin we take is not a cure, but simply a life support. We
    must continue to strive for a cure.
        Congress can and must reauthorize and fund the Special
    Diabetes Program that gives us all hope. We must allow
    scientists to take full advantage of the research opportunities
    that currently exist that may lead to new treatments and a
    cure. Have the determination, focus, and discipline for a win
    here today. Please fund diabetes research. It is life or death
    for many of us.
        Thank you for the opportunity to speak today.
        Senator Collins. Thank you very much, Mr. Morrison.
        [Applause.]
        Thank you for your testimony. Basketball happens to be my
    favorite sport, so I don't know whether that is why JDRF chose
    you to come here today, but they clearly chose very well, and I
    appreciate your being here.
        I suspect that a lot of the children who are here today
    play sports. If you play a sport, put up your hand.
        [Show of hands.]
        Wow. That is great. That is terrific. Well, you have just
    heard that sports are good for you and it is something that you
    can do.
        Dr. Rodgers, we are delighted to have you here today, as
    well. Please proceed.

     TESTIMONY OF GRIFFIN P. RODGERS, M.D., M.A.C.P.,\1\ DIRECTOR,
        NATIONAL INSTITUTE OF DIABETES AND DIGESTIVE AND KIDNEY
      DISEASES, NATIONAL INSTITUTES OF HEALTH, U.S. DEPARTMENT OF
                       HEALTH AND HUMAN SERVICES

        Dr. Rodgers. Thank you, Senator Collins and Members of the
    Committee. Good morning. Thank you for the invitation to
    testify today about type 1 diabetes.
    ---------------------------------------------------------------------------
        \1\ The prepared statement of Dr. Rodgers appears in the Appendix
    on page 37.
    ---------------------------------------------------------------------------
        And as the newly appointed Director of the National
    Institute of Diabetes and Digestive and Kidney Diseases, I am
    pleased to provide you with some brief highlights of the formal
    testimony, which I have submitted for the record.
        But before I begin, let me acknowledge your leadership,
    Senator Collins, in really focusing attention on type 1
    diabetes research, which is benefiting every child here today.
        Now, in response to the Committee's request, I am pleased
    to highlight some of the research advances and opportunities
    made possible by the Special Statutory Funding Program for Type
    1 Diabetes Research.
        This program is administered by our Institute on behalf of
    the Secretary of Health and Human Services. It involves
    numerous other components of the National Institutes of Health,
    as well as the Centers for Disease Control and Prevention and
    patient advocacy groups. The Juvenile Diabetes Research
    Foundation International, in particular, is an important
    partner in our research efforts to prevent and to ultimately
    cure type 1 diabetes.
        Type 1 diabetes is an autoimmune disease in which the
    body's own immune system attacks and destroys insulin-producing
    beta cells in the pancreas. I provided with my testimony two
    handouts. I have shown on the first handout that it is a slowly
    progressive disease.\1\ In genetically susceptible individuals,
    an inciting event such as some as yet unknown environmental
    trigger, leads to the immune system's destruction of these
    insulin-producing beta cells. The beta cells may be destroyed
    over the course of months or perhaps years before patients lose
    their ability to make sufficient insulin to regulate blood
    sugar levels. This loss is depicted by diabetes onset on that
    figure. When diagnosed, patients require insulin administration
    to live, and over time, patients can go on to develop disease
    complications that affect their eyes, their hearts, their
    nerves, and other organs throughout the body.
    ---------------------------------------------------------------------------
        \1\ The documents submitted by Dr. Rodgers appear in the Appendix
    on page 30.
    ---------------------------------------------------------------------------
        The Special Diabetes Program supports a multi-pronged
    research effort to study every aspect and every step of type 1
    diabetes progression that is depicted. For example, we are
    searching for genetic factors and environmental triggers of the
    disease, disease prevention strategies, new ways to slow or
    stop disease progression in newly diagnosed patients,
    innovative approaches to disease management, novel strategies
    to prevent and to treat complications, and ways to cure the
    disease by cell replacement therapy.
        Our efforts are already paying off with improvements in the
    lives of type 1 diabetes patients. For example, recent data
    have demonstrated that patients are living longer, healthier
    lives than ever before. We have evidence that prevention
    efforts are reducing the rate of diabetic kidney disease. A
    long-term study has shown that intensive therapy to control
    blood sugar levels in patients not only dramatically reduces
    the risk of complications involving the kidneys, the nerves,
    and the eyes, but it also reduces the risk of heart disease.
    New continuous glucose monitoring technologies are making it
    easier for patients to control their blood sugar levels, which
    as I mentioned is key to preventing these disease
    complications.
        Now, as shown in that second handout, there are three new
    minimally invasive continuous glucose monitoring devices that
    have recently been approved or are currently undergoing
    approval processes by the Food and Drug Administration.\1\ One
    of these devices was recently approved for use in children.
        The progress I have highlighted demonstrates how research
    is leading to tangible improvements in health and quality of
    life, but it really is imperative that we build upon these
    advances to further benefit the children here today and all the
    other people with type 1 diabetes.
        I am pleased to report that we are poised for even more
    achievements with the launch of numerous long-term, high-
    impact, collaborative research efforts to combat type 1
    diabetes and its complications. These efforts receive support
    from the Special Statutory Funding Program for Type 1 Diabetes
    Research.
        For example, one long-term, large-scale, and bold
    undertaking is called The Environmental Determinants of
    Diabetes in the Young (TEDDY). This study is currently
    enrolling newborns and following them until the age of 15 years
    in order to identify environmental triggers of the disease.
    TEDDY is the only study in the world that has the significant
    statistical power to give us this information. If we determine,
    for example, that it is a virus, or a component of food, or
    some other environmental trigger of disease, this knowledge
    would be critically important and could revolutionize our
    ability to prevent type 1 diabetes. Just as past long-term NIH
    investments in research have improved patient care, we are
    extremely optimistic that the long-term investment in TEDDY
    could result in a major breakthrough in our understanding of
    how type 1 diabetes develops.
        Through networks supported by the Special Diabetes Program,
    the NIH has also recently launched new clinical trials to test
    therapies to prevent type 1 diabetes or to stop the progression
    of the disease in patients who have been recently diagnosed.
    These networks are critically important for testing emerging
    therapies for disease prevention and early treatment. The
    program has also enabled the creation of a research pipeline
    that is propelling progress in drug development for diabetes
    complications. This pipeline includes basic research in the
    laboratory, pre-clinical research in animal models, and
    clinical trials in people.
        Research is also ongoing to find ways to replace insulin-
    producing beta cells that have been destroyed by immune system
    attack--by transplantation or through other means, such as
    regeneration. Cell replacement therapy can potentially be a
    real cure for this disease.
        Together, these and other efforts are attacking the disease
    at all stages to bring the maximum benefit to the people at
    risk or who already are diagnosed with type 1 diabetes.
        Thank you for this opportunity to provide these highlights
    of the advances and opportunities supported by the Special
    Diabetes Program. The NIDDK looks forward to continuing to work
    with its collaborators and partners, such as the Juvenile
    Diabetes Research Foundation International, in order to achieve
    our common goal of preventing and curing type 1 diabetes.
    Improving the lives of all people with this disease, including
    the children here today, continues to be the motivation behind
    our efforts.
        I am pleased to answer any questions that you may have, and
    thank you again for inviting me.
        Senator Collins. Thank you very much, Doctor.
        [Applause.]
        Thank you. We appreciate your update on the research.
        Senator Levin just came in. He is chairing a Committee
    hearing elsewhere. He has asked that I express his commitment
    to you and also I will put his statement in the hearing record.
        [The prepared statement of Senator Levin follows:]
                       OPENING STATEMENT OF SENATOR LEVIN
        Good Morning. It's wonderful to see so many of our nation's
    children here today to take part in the Children's Congress.
        It's particularly inspiring to see the self-confidence and courage
    these children possess in coming here this week to speak to all of us
    as educators, advocates, and leaders.
        My name is Senator Carl Levin of Michigan, and I serve as Chairman
    of the Armed Services Committee and a Member of the Homeland Security
    and Governmental Affairs Committee.
        I understand that there is a remarkable young man here from my home
    state, Tre Hawkins, who is going to share his story with us today.
        Tre is the only child at his school in Detroit with Juvenile
    Diabetes, and since his diagnosis, he has gained the support of his
    school community where three teachers have taken classes on diabetes in
    case of an emergency and his peers know to give him only sugar-free
    snacks.
        Because of Tre, his teachers, peers, and family have all learned
    about this disease and are now also prepared to help others afflicted
    with Juvenile Diabetes. I thank them for their efforts and commend Tre
    for his continued courage and advocacy.
        Thank you all for coming here today and sharing your stories with
    us and leading us through this campaign to fund research that will help
    find a cure for Juvenile Diabetes.

        Senator Collins. Dr. Rodgers, let me start with you. The
    Special Diabetes Program is currently authorized at $150
    million a year. It expires next year, and this program
    currently provides about 35 percent of all federally supported
    type 1 research. How important is it for Congress to renew this
    funding and increase it to $200 million, as Mary Tyler Moore
    has suggested?
        What would be the impact on diabetes research if this
    program were allowed to expire?
        Dr. Rodgers. Expiration of this Special Funding Program
    would have a significant impact on what we do. We would have to
    eliminate or certainly greatly curtail many of our research
    initiatives currently supported by the program. These include
    research consortia and networks where we are on the threshold
    of realizing research advances from previous investments in
    these opportunities.
        Therefore, I would say the scope and the pace of the
    research will have to be reduced. There is also going to be a
    loss of momentum in bringing the benefits of this research to
    the patients if this special funding isn't extended.
        NIDDK is currently engaged in a process, together with a
    number of outside special experts, to understand what we would
    have to do in terms of prioritization of existing projects.
    Clearly, we will have to either greatly reduce, curtail, or
    substantially cut back on programs that are currently ongoing.
        Senator Collins. And is it important to the research
    underway that the program be extended before it expires? I
    mean, you don't want to have a situation where you have to stop
    important research and then try to pick it up. Is it important
    that Congress act this year to prevent the program from
    expiring next year?
        Dr. Rodgers. Thank you, Senator. If the program is extended
    this year as opposed to next year, that would greatly assist
    our planning and management strategies. For example, we are
    quite reluctant to start long-term projects, particularly
    clinical trials, when there is uncertainty about out-year
    funding.
        Second, the general process at the NIH is that there is
    some lead time associated with the development of special
    research funding opportunities or awards, making announcements
    for these awards, having the proposals come in from the
    investigators, having those proposals reviewed by our so-called
    study sections, and then ultimately awarding them. Now, because
    that process is associated with a lead time, having a seamless
    transition would make this much more effective.
        Senator Collins. Thank you. Mary, you mentioned in your
    testimony that you have been dealing with the complications and
    the course of the disease for nearly 40 years. When you look at
    all the research that is underway, is there a particular
    advance that excites you the most?
        Ms. Moore. Well, yes. The test that shows that, no matter
    how long people have had diabetes, there is now reason to
    believe that the beta cells are still alive, some of them, and
    they can be stimulated to regenerate, to grow and produce
    insulin just like a healthy person's pancreas will.
        That is really good for me because throughout these years
    that I have had diabetes, many things have begun to fail me. I
    have something called claudication in the legs, which means
    that the arteries, the veins are clogged and the blood can't
    get to them. This results in my not being able to walk for more
    than a block and a half without having to stop and overcome the
    pain. I was a dancer, and it is heartbreaking to have to deal
    with that. My vision is at a very low state. I can still get
    by, but boy, you should see my shins. They are so black and
    blue from bumping into things.
        Senator Collins. Adam, you are a great role model to the
    children who are here today. You show them that you can be a
    world-class athlete despite having diabetes. Do you have any
    particular advice that you would like to give these children
    today?
        Mr. Morrison. Yes. I had the chance to speak to these
    delegates yesterday, and I will say it again to all these kids
    that what you are doing here in Washington is very special for
    you young kids. And what Dr. Rodgers and Mary are doing is
    great. And understand that, if you take care of yourself, you
    are going to be fine. You can do whatever you want, whether
    that is athletics or whatever you want to pursue your dreams
    in. I was told that when I was diagnosed, and so that is the
    message I want to send to all these young kids. Hopefully, with
    your help in Congress, we can find a cure in their lifetime and
    we won't have to have these meetings anymore. So thank you.
        Senator Collins. Thank you.
        Mary, the last Children's Congress--or actually I think it
    was the 2003 Congress, focused on the Pancreatic Islet Cell
    Transplantation Act. I introduced that bill, and thanks to the
    great grassroots efforts of JDRF, it was signed into law. Do
    you know where that research stands and how it is going? I am
    going to ask Dr. Rodgers, as well, but I would like----
        Ms. Moore. I think you should ask Dr. Rodgers----
        Senator Collins. OK. [Laughter.]
        Ms. Moore [continuing]. But I know in broad strokes, it is
    going very well.
        Senator Collins. Thank you. Dr. Rodgers, could you give us
    an update on that bill, because without the work of all the
    families who are in this room, we would not have gotten that
    bill signed into law, and it is an example where the grassroots
    efforts of JDRF have made such a difference.
        Dr. Rodgers. You are absolutely right, Senator. Having this
    move forward really has made a tremendous difference. This
    legislation gave credit to organ procurement organizations for
    pancreata used to procure islets for basic and clinical
    research. This incentive made it easier for islet processing
    sites to obtain pancreata for isolating islets.
        We think the major benefit of this legislation will be
    realized when our Clinical Islet Transplantation Consortium
    begins islet transplantation protocols, which will involve over
    150 patients. A large number of pancreata will be needed for
    these trials. The law is really critically important because it
    is allowing this to occur in a seamless manner. It has had a
    major benefit, and I applaud the effort in moving that forward.
        Senator Collins. Thank you.
        I am going to thank this panel of witnesses. There are many
    more questions that I could ask you, but I am very cognizant of
    the young people that we have with us today. So thank you so
    much for your eloquent and encouraging testimony. It has been a
    great honor to work with you, and I very much appreciate your
    being here today. Thank you.
        [Applause.]
        I am now going to call forward our next panel of witnesses
    this morning. It consists of children who know first-hand the
    burdens of living with diabetes.
        Our witnesses on this panel are Caroline McEnery of
    Fairfield, Connecticut; Caitlin Crawford of Yarmouth, Maine;
    Tre Hawkins of Detroit, Michigan; and Abraham and Curtis
    Strader of Lakeville, Minnesota, who are accompanied by their
    mother, Ann.
        All of the members of this panel are delegates to the
    Juvenile Diabetes Research Foundation Children's Congress and
    other delegates have obviously joined us in the well, as well,
    today.
        I also want to recognize the other delegate from Maine who
    is here today. That is the Chairman's prerogative, the home
    State prerogative, and that is Aiden Sweeney, and Aiden and his
    mother testified a year ago at a hearing that we held to look
    at the progress we were making in producing an artificial
    pancreas.
        So I want to thank you all for being here, and we are going
    to start with Caroline. Thank you, Caroline.

       TESTIMONY OF CAROLINE McENERY,\1\ DELEGATE, AGE 17, JDRF
              CHILDREN'S CONGRESS, FAIRFIELD, CONNECTICUT

        Ms. McEnery. Good morning, Senator Collins, Senator
    Lieberman, and Members of this Committee.
    ---------------------------------------------------------------------------
        \1\ The prepared statement of Ms. McEnery appears in the Appendix
    on page 51.
    ---------------------------------------------------------------------------
        I would like to thank Senator Lieberman for all that he
    does to help us come closer to a cure. I am so proud to be from
    Connecticut and appreciate his commitment to advancing diabetes
    research.
        Thank you for inviting me and the other kids on this panel
    to speak to you today. It is exciting and a little scary to be
    part of a congressional hearing, but I know that it is
    important for Congress to hear from kids who are living with
    type 1 diabetes every day, and I am thankful for this
    opportunity.
        My name is Caroline McEnery, and I am 17 years old. I was
    diagnosed with juvenile diabetes when I was 9. Unlike most
    children with diabetes, I wasn't diagnosed by a doctor. I was
    diagnosed by my mom and dad. This is because diabetes is not a
    rarity in my family. My older sister, Caitlin, now 22, was
    diagnosed with diabetes when she was 3. As soon as I began to
    display symptoms, my parents knew exactly what was wrong with
    me. Their worst nightmare had come true. They now had two
    children living with this disease.
        Finding out that I had diabetes was especially hard for me.
    I had watched my sister struggle with the disease for 9 years
    before I was diagnosed, and what I was about to endure was no
    surprise. I knew how demanding diabetes was and that it would
    be with me every second of every day until a cure is found. I
    knew that with each meal came a needle, with each birthday
    party, a sugar-free cake, and with each good night to my
    parents, the worry about a low blood sugar episode during the
    night. More than anything, I knew that I would be different
    than all of my friends.
        I am lucky to have a family that already knew so much about
    diabetes at the time of my diagnosis. However, despite their
    knowledge, diabetes still takes a toll on all of us. My mom and
    dad have to get up in the middle of the night to check my blood
    sugar at 2 a.m. to make sure that I am not too high or too low
    in order to prevent seizures. If my blood sugar is too high
    before a family mealtime, everyone must wait to eat so that my
    insulin has time to work.
        My diabetes and the vigilant scheduling that it requires is
    a burden on my entire family. No matter how hard we try to work
    around it, we can never avoid it.
        Not a minute goes by when I forget that I have diabetes. My
    insulin pump is attached to me 24 hours a day, and until a cure
    is found, I will never get a break from it. Whether I am at
    home, at school, or on the volleyball court, I am always
    worrying about what my blood sugar is. As much as I try to hide
    having diabetes, it is inescapable. When I go out for ice cream
    with friends, it is never just ice cream to me. It is 40 grams
    of carbohydrates and four units of insulin.
        There are days where I just want to give up on my diabetes,
    but I keep going. My strength for handling this challenging
    disease comes from the hope that someday soon, I will no longer
    have to.
        When we were small, my sister and I shared a bedroom. At
    night, we would talk about things like Disney princesses,
    Barbie dolls, and what we wanted to be when we grew up. As we
    grew older, the topics ranged from boys and makeup to clothes
    and nail polish. However, after diabetes shattered our family
    for a second time, our late-night talks became an opportunity
    for us to voice our fears to one another about the burden of
    managing diabetes every day and the threat of complications
    that we both face in the future.
        No matter how many times a day I check my blood sugar,
    change my pump site, exercise, or closely count carbohydrates,
    I still face the impending risks of blindness, heart disease,
    kidney disease, and nerve damage. Every year, I have an annual
    eye doctor appointment, not because I am near- or far-sighted,
    but to screen for complications of diabetes in my eyes. I dread
    this appointment because despite of all the work I do day in
    and day out to manage my diabetes, I still fear that every year
    will be the year they tell me I am going to begin to lose my
    sight because of my diabetes.
        Researchers all over the world are working to find a cure,
    and I know that the funding Congress provides for research is
    helping and is resulting in exciting advances. One advance that
    is very real to me is the development of continuous glucose
    sensors that track a person's blood sugar level in almost real
    time and help them to stay in better control to reduce their
    risk for developing complications later in life.
        At the beginning of this year, I began participating in a
    continuous glucose monitoring clinical trial. The CGM is a
    system that is built into my insulin pump. I wear a
    transmitter, which is connected to a wire probe and inserted
    under my skin. I have to change the second site every 3 days,
    in addition to my pump site, which I change every other day.
    The CGM gives me freedom, which I did not have before. I no
    longer worry about having a seizure during the night because my
    sensor will alert me before this happens. I can participate in
    sports with ease because I can see what my blood sugar is
    throughout my games.
        Although the CGM has made my diabetes care much more
    manageable, it is certainly not a cure. I still have to test my
    blood sugar twice a day and calculate my insulin doses, and
    this trial requires that I visit the doctor every 2 weeks
    rather than every 3 months.
        Congress must do its part, too, by making funding for
    diabetes research a priority. I would have given anything to
    shop for a junior prom dress like all of my classmates without
    thinking about how to incorporate an insulin pump hidden
    underneath. I am fortunate enough to remember what it was like
    to live a life without diabetes, and I hope that someday I can
    experience that again. I want to be able to tell my children
    about the day I was cured of juvenile diabetes, and it can't be
    done without you. Please help me, my sister, and the 3 million
    other Americans with juvenile diabetes be able to say, I used
    to have diabetes.
        Senator Collins. Thank you very much, Caroline.
        [Applause.]
        Thank you. You did a great job. Caitlin from Yarmouth,
    Maine.

       TESTIMONY OF CAITLIN CRAWFORD,\1\ DELEGATE, AGE 13, JDRF
                  CHILDREN'S CONGRESS, YARMOUTH, MAINE

        Ms. Crawford. Hello. My name is Caitlin Crawford, and I am
    13 years old, and I live in Yarmouth, Maine. Maine is a great
    place to live, and I feel so lucky to have you, Senator
    Collins, as my Senator. You do so much for people with
    diabetes, and you give us all so much hope. Thank you for that.
    ---------------------------------------------------------------------------
        \1\ The prepared statement of Ms. Crawford appears in the Appendix
    on page 53.
    ---------------------------------------------------------------------------
        I was diagnosed with type 1 diabetes 22 months ago on
    August 19, 2005. That was the day my life changed forever.
    Unlike some of the kids in this room, I remember what life used
    to be like before I had diabetes, and I would give anything to
    go back to being a normal kid. Every day for the past 22
    months, I test my blood sugar 10 to 12 times, take five to
    seven insulin shots, and worry all the time, especially when I
    close my eyes at night to go to bed.
        I am a skier on the middle school team in Yarmouth, and in
    a lot of ways, the way I think about each ski race is how I
    think about my diabetes. I have been trained to go down the
    mountain, looking at each gate, attacking the hill, and
    crossing the finish line. In ski racing, the first gate is the
    hardest. As you push out of the starting block, everything has
    to be perfect.
        This is just like getting up in the morning when you have
    diabetes. I really have to think ahead. How do I feel? How much
    exercise will I be doing today? What am I going to eat? How
    much insulin am I going to have to take today? I have to make
    sure that my bag is always full of the supplies that I need to
    carry me through the day. I do sometimes forget and pay the
    consequence later.
        When you are racing, you never really hear the fans as you
    are speeding down the mountain, but you know they are
    supporting you and cheering you on. With diabetes, I need to
    rely on their support every day. My fans are my family,
    friends, coaches, doctors, and nurses.
        My No. 1 fan is my family, and they are amazing. I have
    realized what they have had to give up to help me, especially
    my mother, who left her job when I was diagnosed. My brother,
    Wes, gives up a lot because of me. If I am not feeling well or
    my numbers are off, everything has to stop, and that means
    sometimes something he really wants to do. My dad is the rock.
    He picks us up on all of those hard days. My friends are there,
    but I always feel that I am different and not like them. I wish
    that I could just be like them, to be so carefree. My school
    nurse is also the best. She is always looking out for me so I
    can think about my studies.
        When I ski, sometimes I slip and catch an edge, but I get
    back up and continue on. This is how I feel about diabetes. I
    have had some really bad lows and some really bad highs. I have
    watched a taxi drive away in New York City and realized in that
    cab was my diabetes bag, and we were 300 miles away from home.
    We got it back after a few stressful hours. Another time, I got
    stuck on a chairlift, and as I sat up in the air looking down,
    I realized that I did not have my diabetes supplies with me.
    After 40 minutes, I was still stuck, thinking that this could
    turn into something really bad soon.
        Unlike ski racing, where each race has a beginning and an
    end, diabetes is always with me. I can never take a break. It
    is hard, and sometimes I just want to stop and take a break--
    stop testing my blood sugar, stop having to take insulin shots,
    stop counting all the carbs in my food, and stop worrying about
    what might happen to me all the time. But I know this isn't an
    option.
        When I think about my future, I think about being the best
    skier I can be. I also think about what diabetes is doing to my
    body and that unless a cure is found, I might be facing serious
    complications.
        I know that my hope for a cure lies in medical research. I
    am doing my part to keep myself healthy, and I am asking
    Congress to help by providing more funding for research.
    Progress is being made, but there is still more work to do. I
    will continue to do my part, participating in walks, speaking
    to friends, or just being a friend to a new diabetic. But time
    is not on my side, and we cannot do it without your help.
        When I race, I wear the number 19 on my back, and when
    people hear, ``Go Number 19,'' it is just not for me to ski
    faster. It is also the day that my life changed forever. Thank
    you for listening to my story.
        Senator Collins. Thank you very much, Caitlin.
        [Applause.]
        Good job. I can see why you are a good skier, as well, and
    you can count me as part of your team of fans.
        Tre, thank you for being here.

    TESTIMONY OF TRE HAWKINS,\1\ DELEGATE, AGE 12, JDRF CHILDREN'S
                      CONGRESS, DETROIT, MICHIGAN

        Mr. Hawkins. Good morning. My name is Tre Hawkins, and I
    live in Detroit, Michigan. I am 12 years old. To you, I may
    look like a regular kid, but I was diagnosed with type 1
    diabetes when I was 7 years old, and I have spent every day
    since then wanting to be a regular kid, free from diabetes.
    ---------------------------------------------------------------------------
        \1\ The prepared statement of Mr. Hawkins appears in the Appendix
    on page 55.
    ---------------------------------------------------------------------------
        It was my grandmother who recognized the symptoms. She was
    worried about my weight, my constant hunger and thirst, and
    about my going to the bathroom every 10 to 15 minutes. She took
    me to see the doctor, and they did a urine test, and my sugar
    level was very high. The doctor had her take me directly to
    Beaumont Hospital, and I stayed there for 3 or 4 days until
    they got my glucose level under control. At that time, I knew I
    was sick, but I didn't know how much my life was going to
    change.
        It was difficult at first at school because my classmates
    didn't understand diabetes. My teachers were concerned about
    what to do if I became sick while at school. Three of my
    teachers took a weekend class to learn about diabetes and what
    to do if I became sick. They then had me talk to my classmates
    about diabetes, and now I have some playground buddies that
    look out for me at recess and know what to do if I get sick.
        I know that I am lucky to have such good support at school.
    It is a little better now, but I still have trouble keeping my
    sugar level in the normal range during school because I have to
    count the carbs I eat and there are no labels on the food to
    tell me how many carbs are in what I am eating. When my sugar
    level goes too high or too low, I have trouble concentrating in
    class and I don't feel well.
        This disease has been a financial burden on my grandparents
    and my mom, but they try hard to make my life as normal as
    possible and they don't complain. When you have type 1
    diabetes, you have to take insulin every day and there are a
    lot of supplies that go along with it.
        I am glad that you invited kids to talk to you about what
    it is like to have diabetes and why a cure is important to us.
    For me, a cure means being able to be a kid, to play baseball
    and ride my bike without fear of my blood sugar dropping too
    low. It means no more pricking my fingers at least five times a
    day. It means no more getting sick at school because my sugar
    level has gone too high. It means no more scheduling my eating
    and counting carbs. For me and the kids just like me, it means
    freedom, freedom to be just a kid.
        Thank you for this opportunity to speak to you today, and
    thank you for listening. I am just a kid, but I have big
    dreams. Right now, my biggest dream is to be cured from
    diabetes. Please remember me--Tre Hawkins from Detroit,
    Michigan--and work hard to provide more money for diabetes
    research so this dream can become a reality.
        Senator Collins. Thank you, Tre. Great job.
        [Applause.]
        Thank you, Tre. You did a terrific job.
        We are now going to hear from Ann, who is going to speak on
    behalf of her sons.

       TESTIMONY OF ANN STRADER,\1\ MOTHER OF ABRAHAM AND CURTIS
    STRADER, DELEGATES, AGE 6, JDRF CHILDREN'S CONGRESS, LAKEVILLE,
                               MINNESOTA

        Ms. Strader. Senator Collins and Senator Lieberman, thank
    you for holding this hearing and giving us the opportunity to
    share our stories with you. I am speaking today on behalf of my
    6-year-old identical twin boys, Abraham and Curtis Strader, who
    both live with type 1 diabetes.
    ---------------------------------------------------------------------------
        \1\ The prepared statement of Ms. Strader appears in the Appendix
    on page 56.
    ---------------------------------------------------------------------------
        Raising twin boys lends itself to a lot of energy,
    enthusiasm, wrestling, and noise. Raising twin boys with
    diabetes requires constant management, daily care, and
    thousands of finger pokes.
        I remember after Abe and Curt were born, we brought them
    home from the hospital. I would often sit in the glider in
    their nursery and just watch them sleep. They were absolutely
    precious. I felt a sense of joy that was accompanied by the
    overwhelming feeling of being their protector. I knew that my
    boys would be well loved, cared for, and that my husband and I
    would always keep our boys protected and safe. Then, just 2
    years later, diabetes struck.
        In 2003, when Abe and Curt were just 2 years old, both were
    diagnosed with diabetes in a span of 2 weeks. In that 2-week
    period, half our family had become diabetic. Neither my
    husband, Neil, nor I have a single case of type 1 diabetes in
    our extended families. We quickly learned the seriousness of
    diabetes and the importance of managing the disease in order to
    keep our boys healthy.
        Children with diabetes typically have a shortened life
    expectancy and a higher risk of stroke, blindness, and kidney
    failure. All of those devastating eventual effects seem far
    off, but the one that always scares me the most is the fact
    that no one knows how low blood sugars affect brain development
    in young children like Abe and Curt.
        With the diagnosis came the loss of predictability and
    stability. I took a leave from my job as a teacher to stay home
    and provide full-time care for my boys. I no longer could leave
    them with just someone who would provide care for them. I could
    only leave them with someone who knew how to check blood
    sugars, give insulin shots, count carbohydrates, document with
    detail, and identify symptoms of hypoglycemia and
    hyperglycemia. Of course, they must be able to give a glucagon
    shot in case my child were to become unconscious.
        I remember when we were in the hospital with Abraham, and
    he would cry and cry when the nurse would come in to give him
    shots. He would scream, ``Make her stop, Mommy. Make her
    stop.'' My heart was crushed. I was Abe's protector, and now
    this disease had made me helpless. I realized that soon I would
    be the one giving him shots that were causing him fear, pain,
    and anger. I have no choice but to do this. It is a matter of
    fact that without proper management and care, our children
    would die.
        As a family, my husband and I have made a commitment to
    manage the disease so that the disease doesn't manage us. But
    most days, this is easier said than done. Abe and Curt are not
    able to consistently tell us when they feel like their blood
    sugar is high or low. It is a matter of constant testing. As
    parents, we have to try to judge if their behavior is related
    to blood sugars or are they just acting like regular kids.
        Their blood sugars are impacted by food, exercise, anxiety,
    and their own growing bodies. Sometimes exercise will impact
    Abe and Curt immediately, and other times it will drop them low
    up to 12 hours later. It is this sort of unpredictability that
    keeps us getting up every night at all hours to check their
    blood sugar. I can't even begin to describe to you the worry
    that we have as parents that we carry around with us every day
    and night. Worry that we are not managing their diabetes as
    well as we should, worry that one of my boys will experience a
    low blood sugar episode in the night and not wake up in the
    morning, worry that as much as we try to allow them to be
    regular kids, diabetes is robbing them of their childhood, and
    worry about what having diabetes will mean for them as they
    grow older.
        But this worry is nothing compared to what Abe and Curt go
    through every day. Neil and I have administered approximately
    5,500 shots and 23,360 finger pricks to our boys in the past 4
    years. For the first 2 years living with diabetes, my children
    received three to four insulin shots a day and we checked their
    blood sugar with a finger poke six to ten times around the
    clock. My husband remembers having to ask a neighbor to come
    over to help hold one of the boys down so he could administer a
    shot.
        When Abe and Curt were 4 years old, they started wearing
    insulin pumps. We have experienced great relief from shots, but
    finger pokes are still constant. We have experienced tighter
    management, but high and low blood sugars are still a battle. A
    pump is a great management tool, but it is not a cure.
        After the boys were diagnosed, my husband and I knew we had
    to make a choice. We could sit around and feel victimized, or
    we could become proactive in finding a cure for this disease.
    Over the past 4 years, we have actively raised money for JDRF
    through our local Walk For a Cure. Our family team, Team Twin
    Power, has raised over $45,000, and I do all I can for JDRF in
    its mission for a cure. However, I know that no matter how much
    money our family or families like mine across the country
    raise, we need increased Federal support for diabetes research
    to get to our goal of finding a cure.
        I am asking Congress--on behalf of Abe and Curt and the
    millions of kids who are living with type 1 diabetes--to
    increase Federal funding for diabetes research. Be our partner.
    Give Abe and Curt the hope that a cure will be found in their
    lifetime. I promised my boys that I will do all I can to get to
    a cure as soon as possible. I am asking you to make the same
    promise to them.
        I would like to share a few statements that Abe and Curt
    have made about living with diabetes and what they would like
    our lawmakers to know about living with this disease.
        Abe has said, ``I want to tell lawmakers we have to get a
    cure for diabetes so I wouldn't have to wear a pump all the
    time. I want them to know it hurts when my mom has to change my
    site. I would like to tell them that sometimes my blood sugar
    is low, and it makes me feel really dizzy and sick. It is hard
    to do my best work at school when I feel dizzy and sick.''
        And Curt says, ``I want to tell people in Washington I
    don't like having diabetes. I have to wear a pump all the time
    or I would get really sick. One day, I threw up at school
    because my blood sugar was really high. I didn't feel well at
    all.''
        Abe and Curt have just finished kindergarten. They enjoy
    playing soccer, T-ball, and going to water parks. They don't
    know what life is like without a blood sugar meter, shots, a
    pump, and counting carbohydrates. I would give anything for
    them to know a future without diabetes.
        This past December, my son Abe woke up on Christmas
    morning, and just like thousands of other kids, he could hardly
    wait to open gifts. He quickly ripped into a colorful box from
    his grandma. Inside the box, she had put a small Star Wars toy
    and several dollar bills for him to pick out something at the
    store. Abe quickly grabbed the toy and turned to me and said,
    ``Wow, Mom. Look at all this money we can use to find a cure
    for diabetes.''
        It is not every 6-year-old who thinks about giving money to
    research. We all look forward to a day without diabetes.
        Senator Collins. Thank you very much.
        [Applause.]
        Thank you. Do either Curtis or Abe want to say anything to
    us?
        Curtis Strader. Please promise to remember me.
        Abraham Strader. Please promise to remember me.
        Senator Collins. I promise.
        [Applause.]
        Good job, boys. Thank you very much for your testimony.
        Ann, let me start with my first question for you. First of
    all, I so admire your devotion to your children, but also your
    advocacy work. It seems to me that another advantage when you
    get involved in a group like JDRF is you meet other families
    who are coping with the same kinds of challenges that you are
    having. Has that been helpful to you as well from that
    perspective?
        Ms. Strader. I think it helps you to keep from feeling
    isolated, and to come here and see all these kids, I know for
    Abe and Curt, we don't know very many other children in our
    area that they are friends with that have diabetes, and so for
    them to come here and see all the kids in yellow shirts is
    helpful for them. I remember them looking at me and saying,
    ``All these kids have diabetes?'' and they couldn't believe it.
    It was very evident when we were standing to sing on the
    Capitol lawn and Abe found two other kids that have matching
    purple pumps with his and just how affirming that was for him
    that other kids deal with this day in and day out. It is a
    great thing for families like ours to get involved with JDRF,
    and it helps to create awareness for other people, as well.
        Senator Collins. Thank you.
        Tre, I understand that you are interested in being a
    professional football player when you grow up, is that right?
        Mr. Hawkins. Yes. I want to be a running back.
        Senator Collins. All right. So did it help you today to
    hear Adam's testimony? He is a professional athlete. Does that
    help to inspire you to achieve your goal, too?
        Mr. Hawkins. Yes.
        Senator Collins. Did you know any other children who had
    juvenile diabetes at your school in Michigan?
        Mr. Hawkins. Nobody. I am the only one who has diabetes in
    my school.
        Senator Collins. Is that hard for you?
        Mr. Hawkins. Yes.
        Senator Collins. I bet it is, but it sounds like you have
    got some good buddies that help you, is that right?
        Mr. Hawkins. Yes, I do.
        Senator Collins. So that must be a help.
        Caitlin, what about you? Was it hard to tell your friends
    about your diabetes?
        Ms. Crawford. It kind of was because no one really knows
    what it is. There are only five of us in our whole town, and
    four of them are all in the high school. I am the only one in
    the middle school. So no one really had any idea, but no one
    really treats me any differently.
        Senator Collins. That is great. So your friends help you,
    also. And it sounds like you have a great school nurse who
    helps, as well. That must be a plus for you, too.
        And Caroline, you told us about the clinical trial that you
    are part of, the continuous glucose monitor. How did you find
    out about this clinical trial?
        Ms. McEnery. Well, one of the doctors at the Yale Diabetes
    Program told me about it, and I was really interested in
    becoming a participant, so I called the woman who was running
    it and then I started.
        Senator Collins. That is great. That is not only going to
    help you, but by your participating in this clinical trial, you
    will help all these other children who might benefit from that
    kind of monitor in the future. So I think you should feel
    really good about that.
        Ms. McEnery. Yes, I do.
        Senator Collins. That is great.
        Caitlin, when you found out that you had diabetes, were you
    worried that you might not be able to be on the ski team
    anymore?
        Ms. Crawford. Well, I knew my uncle had diabetes, but I
    didn't really know what it meant. I didn't really think much
    about skiing at the time. I was just thinking, am I going to be
    OK? I was kind of nervous at first starting again because I
    wasn't sure what was going to happen with sports now. But
    sports are a big part of my life. I do lacrosse in the spring,
    and I do soccer in the spring, and I do skiing, both Nordic and
    downhill, in the winter, and then I do soccer in the fall, so
    it helps maintain my blood level.
        Senator Collins. That is wonderful. I think it is just
    great that you have kept all that up.
        I do want to thank all of you for being here today. You
    remind of us how important the mission is for us to renew the
    Special Diabetes Program and increase the funding from $150
    million to $200 million.
        And I want to tell all of the children who are here today
    that you have a special assignment, OK. Here is your
    assignment. It is a little bit like homework, but it is more
    fun. Your assignment is to go see your Members of Congress or
    your Senators and tell them that we need more money for
    research. Will you do that for me?
        Chorus. Yes.
        Senator Collins. Good because, you know, if you go and talk
    to them, I will tell you, we will get the job done.
        All of you have asked that I remember you, and I just
    wanted to say to all the children who are here today that I
    promise to remember each and every one of you and to work for
    the funding that will produce better treatments, but most
    importantly, that will point the way to a cure.
        So thank you so much for coming all the way from your home
    States to be with us today. You remind us of what this is all
    about, and you inspire us to continue to fight for the money
    for diabetes research. So thank you so much for being here
    today.
        I want to thank JDRF for doing just a wonderful job and
    Mary Tyler Moore, who is such an inspiring international
    chairman and who has helped advance the public's understanding
    of this terrible disease. I want to thank all of you who have
    come from all around the country.
        I want to thank Larry Soler, who we work so closely with
    and does such a fabulous job for JDRF.
        I also want to thank Priscilla Hanley on my staff. She has
    worked with me for years, and she has adopted this as her
    personal cause, as well as mine.
        So thank you all for teaching us so much today, for putting
    a human face, such wonderful human faces, on this disease and
    for inspiring us to fight for a cure. Thank you.
        The hearing record will remain open for 15 days for
    additional materials, and this hearing is now adjourned. Thank
    you.
        [Whereupon, at 11:07 a.m, the Committee was adjourned.]

                                A P P E N D I X

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