[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
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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
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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
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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.
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\1\ The prepared statement of Ms. Moore appears in the appendix on
page 32.
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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.
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\1\ The prepared statement of Ms. Crawford appears in the Appendix
on page 53.
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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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