[Senate Hearing 111-908]
[From the U.S. Government Publishing Office]
S. Hrg. 111-908
TYPE 1 DIABETES RESEARCH: REAL PROGRESS AND REAL HOPE FOR A CURE
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HEARING
before the
COMMITTEE ON
HOMELAND SECURITY AND GOVERNMENTAL AFFAIRS
UNITED STATES SENATE
of the
ONE HUNDRED ELEVENTH CONGRESS
FIRST SESSION
__________
JUNE 24, 2009
__________
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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 TOM COBURN, Oklahoma
THOMAS R. CARPER, Delaware JOHN McCAIN, Arizona
MARK L. PRYOR, Arkansas GEORGE V. VOINOVICH, Ohio
MARY L. LANDRIEU, Louisiana JOHN ENSIGN, Nevada
CLAIRE McCASKILL, Missouri LINDSEY GRAHAM, South Carolina
JON TESTER, Montana
ROLAND W. BURRIS, Illinois
MICHAEL F. BENNET, Colorado
Michael L. Alexander, Staff Director
Aaron M. Firoved, Professional Staff Member
Brandon L. Milhorn, Minority Staff Director and Chief Counsel
Priscilla H. Hanley, Minority Professional Staff Member
Trina Driessnack Tyrer, Chief Clerk
Patricia R. Hogan, Publications Clerk and GPO Detailee
Laura W. Kilbride, Hearing Clerk
C O N T E N T S
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Opening statements:
Page
Senator Collins.............................................. 1
Senator Lieberman............................................ 3
Senator Lautenberg........................................... 4
Senator Burris............................................... 5
Senator Shaheen.............................................. 5
Senator Akaka................................................ 6
Senator Specter.............................................. 17
Prepared statements:
Senator Lieberman............................................ 27
Senator Collins.............................................. 28
WITNESSES
Wednesday, June 24, 2009
Mary Tyler Moore, International Chairman, Juvenile Diabetes
Research Foundation............................................ 7
Griffin P. Rodgers, M.D., Director, National Institute of
Diabetes and Digestive and Kidney Diseases, National Institutes
of Health, U.S. Department of Health and Human Services........ 11
Sugar Ray Leonard, Retired Professional Boxer.................... 14
Nicholas J. Jonas, Singer, Songwriter, and Actor, Jonas Brothers. 15
Hannah Ryder, Delegate, JDRF Children's Congress, Cumberland,
Maine.......................................................... 19
J. Patrick Lacher III, Delegate, JDRF Children's Congress, South
Glastonbury, Connecticut....................................... 20
Asa Kelly, Delegate, JDRF Children's Congress, Charlotte, North
Carolina....................................................... 21
Ellen Gould, Mother of Delegates Patrick, Samuel, Sarah, and
Oliver Gould, JDRF Children's Congress, Nashville, Tennessee... 22
Alphabetical List of Witnesses
Gould, Ellen:
Testimony.................................................... 22
Prepared statement........................................... 59
Jonas, Nicholas J.:
Testimony.................................................... 15
Prepared statement with an attachment........................ 53
Kelly, Asa:
Testimony.................................................... 21
Prepared statement........................................... 58
Lacher, J. Patrick, III:
Testimony.................................................... 20
Prepared statement........................................... 57
Leonard, Sugar Ray:
Testimony.................................................... 14
Prepared statement........................................... 51
Moore, Mary Tyler:
Testimony.................................................... 7
Prepared statement........................................... 30
Rodgers, Griffin P., M.D.:
Testimony.................................................... 11
Prepared statement........................................... 34
Ryder, Hannah:
Testimony.................................................... 19
Prepared statement........................................... 56
APPENDIX
Responses to post-hearing questions for the Record from Dr.
Rodgers........................................................ 61
TYPE 1 DIABETES RESEARCH: REAL PROGRESS AND REAL HOPE FOR A CURE
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WEDNESDAY, JUNE 24, 2009
U.S. Senate,
Committee on Homeland Security
and Governmental Affairs,
Washington, DC.
The Committee met, pursuant to notice, at 8:51 a.m., in
room SD-342, Dirksen Senate Office Building, Hon. Susan M.
Collins, presiding.
Present: Senators Lieberman, Akaka, Burris, and Collins.
Also Present: Senators Specter, Lautenberg, and Shaheen.
OPENING STATEMENT OF SENATOR COLLINS
Senator Collins. Good morning. The hearing will come to
order.
I so appreciate this opportunity to hold this hearing to
examine the devastating impact that juvenile diabetes has on
children and their families. This is the fifth Juvenile
Diabetes Research Foundation (JDRF) Children's Congress that I
have had the honor to Chair, and I am particularly grateful to
my good friend, the Chairman of the Committee, Senator
Lieberman, for turning the gavel over to me this morning. He
will be joining us shortly, as will other Members. But we are
starting a bit early because at 10 a.m., unexpectedly, we are
going to have an impeachment proceeding begin in the Senate.
This was totally unanticipated, so it makes the schedule a bit
harder this morning. So what we will do is we will go up until
that time, then we will take a break, and then we will
reconvene. So we are going to try to start early and get as
much done as we can.
I want to begin by welcoming the delegates who are here
today. It is wonderful to see all the boys and girls who have
come from every State in the Union to be with us today, and we
also have some students from foreign countries as well. We have
150 delegates who have traveled to Washington from every State
in the country and from around the world. They are going to
help those of us who serve in Congress better understand just
what it is like to have diabetes, how serious it is, and how
important it is that we all work together to try to find a
cure. I also want to give a special welcome to the delegates
from my home State of Maine: 11-year-old Hannah Ryder of
Cumberland is here, she is sitting in the first row; and 8-
year-old Cole Buchanan of Falmouth is here. And, Cole, why
don't you put your hand up so we can see you. Very good. Thank
you.
Also here today are the grandchildren of two Senators,
Senator Lautenberg and Senator Shaheen, and the Senators are
going to be joining us as special members of the Committee just
for today.
As the founder and Co-Chair of the Senate Diabetes Caucus,
I have learned so much about this disease during the past 12
years and the heartbreak and difficulties that it causes for so
many families as they await a cure. Diabetes is a life-long
condition that affects people of every age, race, and
nationality.
Moreover, it is estimated that diabetes accounts for more
than $174 billion of our Nation's annual health care costs.
Health spending for people with diabetes is almost double what
it would be if they did not have the disease.
These statistics are overwhelming, and they compel us to
act. But what really motivated me to devote so much energy and
time to diabetes is meeting more and more families--like our
delegates today--whose lives have been forever changed by
diabetes. I will never forget, back in 1998 when I was a newly
elected Senator, meeting with a family from Maine whose son had
diabetes. At that time, I did not know anything about the
disease, but this family taught me so much. And I will never
forget this 10-year-old boy looking up at me and saying, ``I
wish I could just take one day off from having diabetes.'' And
I bet the children who are here today feel like that, too.
So that is why it is so important that you have traveled to
Washington today to tell your stories. You put a human face on
all of the statistics, and you help us focus better on what
Congress must do to ultimately conquer this terrible disease.
Juvenile diabetes is the second most common chronic disease
affecting children. Moreover, it is one that they never
outgrow. An average child with diabetes will have to take more
than 50,000 insulin shots in a lifetime. Moreover, these
injections must be balanced with regular meals and daily
exercise, and blood sugar levels must be closely monitored
throughout their lives through frequent testing.
While the discovery of insulin was a landmark breakthrough
in the treatment of diabetes, it is not a cure, and people with
Type 1 diabetes face the constant challenge of working to avoid
life-threatening complications.
Thankfully, there is good news for people with diabetes.
Since I founded the Senate Diabetes Caucus, funding for
diabetes research has more than tripled, and last year we spent
more than $1 billion on diabetes research. As a consequence, we
are seeing some encouraging breakthroughs, and we are on the
threshold of a number of important discoveries.
Advances in technology, like continuous glucose monitors,
are helping patients better control their blood glucose levels.
These advances are also moving us closer to our long-term goal
of an artificial pancreas. And drugs originally designed for
cancer therapy are showing tremendous potential for treating
diabetic eye disease.
While we can be pleased at the progress we are making, this
is no time to let up. We have two choices: We can either sit
back and continue to pay the bills and endure the suffering, or
we can aggressively pursue a national strategy aimed at curing
this disease.
The good news is that there is strong support for more
research funding in Congress, and that is thanks to all of you
who are here today. It is that strong grass-roots effort that
is led by JDRF that has helped to convince so many Members of
Congress. That is why we were able to extend the Special
Diabetes Program for 2 more years through September 2011. It is
critical to our efforts to find better treatments, a means of
prevention, and, ultimately, a cure.
I am hopeful that this morning's hearing will help us
generate even more support, and you are so key to that effort.
Again, I want to thank our Chairman, who has been such a
wonderful advocate, for allowing me to hold this hearing this
morning. Chairman Lieberman, thank you, and forgive me for
beginning early because of the schedule.
OPENING STATEMENT OF CHAIRMAN LIEBERMAN
Chairman Lieberman. Thank you, Madam Chairman.
I just want to indicate for the press here that Senator
Collins has not pulled off a coup. [Laughter.]
She is chairing this meeting at my request in recognition
of her principled and really passionate leadership here in
Congress, along with others like Senator Lautenberg, on behalf
of the recognition of the impact of diabetes, particularly
juvenile diabetes, and really extraordinary advocacy, effective
advocacy for Federal support for the kind of research that is
leading to dramatically improved treatment and I know with a
certainty will lead us to a cure one day. So I am just very
honored to be able to sit here today with Senator Collins.
This is actually a very exciting day in this Committee
every year--exciting because of the feeling of progress we have
every year; frankly, exciting just because, no matter how
attractive the witnesses are, we never have as beautiful a
group as we have to look at today.
I will also say that the witnesses on the first panel
generate a lot of excitement. I do find that it is
generationally affected. [Laughter.]
For instance, the younger members of my office, pages and
interns, are quite excited that Nick Jonas is here.
I am thrilled to be in a room with Mary Tyler Moore and
Sugar Ray Leonard.
I do not want to date myself, Sugar, but I would be excited
to be in a room with Mr. Robinson. [Laughter.]
Anyway, your presence means a lot, and, Dr. Rodgers,
obviously yours does as well.
Just to say very briefly, this is an extraordinary story
about the blessings of life that each of us receive from God,
and the fact that we are given these amazing bodies that are
miraculous, but not perfect, and sometimes a lot of us have a
problem with our bodies. This one goes back a long ways in
history--diabetes. But what is amazing are two things.
One is the extraordinary technological research,
unimaginable just a short time ago, that is allowing so much
better treatment and will get us to a cure.
The second is the absolutely inspirational message that all
of you and, frankly, all the people that all of us know who
have diabetes--there is hardly a person that I know in the
Senate or just anywhere who does not have family members or
friends who are dealing with diabetes. I bet that is true of
all of us here on the panel, and the way in which you manage
this problem every day is an inspiration to all of us. Because
somebody once said to me a long time ago, in life there is no
one who does not either get pushed down or stumble sometimes.
It is just the nature of life. The question is: Do you get up?
And how do you get up? And the reality is, as I look at the
panel and the beautiful, exuberant, slightly restless faces in
front of me, that is what this is all about. So you are all
winners, and together, under the leadership of Senator Collins,
we will be winners in this fight against diabetes.
Thank you, Madam Chairman. I look forward to hearing these
witnesses and, of course, the second panel of witnesses,
including a celebrity of our own from Connecticut. Thank you.
Senator Collins. Thank you, Mr. Chairman. I would now like
to recognize Senator Lautenberg. Senator Lautenberg, thank you
for joining us this morning.
OPENING STATEMENT OF HON. FRANK R. LAUTENBERG, A U.S. SENATOR
FROM THE STATE OF NEW JERSEY
Senator Lautenberg. Thank you, Senator Collins, for
inviting me to the Committee today. It is a deeply personal
issue for me, and I appreciate the chance to work with you and
Senator Lieberman, and I thank you not only for the invitation
but for the work you have chosen to do here. It touches so many
of us. As Senator Lieberman said, there is not anybody that I
know who does not know someone who suffers from diabetes. And I
am delighted to be here, honored to be here with these young
people and with our friends at the witness table. It takes a
lot to turn a struggle into strength, but all of you have done
that, and we all benefit from your strength, like our
witnesses.
The issue is very personal to me. I am deeply committed to
keeping our children in this country of ours healthy, and I
love and care deeply for my diabetic grandchild. Her name is
Maddie Birer. Maddie, raise your hand, please. And she came
down with the disease unexpectedly, as it probably always
happens, but she is like many others. She has turned to
treatment. She has proven something. She is doing well. She is
energetic. She plays soccer. She even scores goals--doing
everything an 11-year-old girl dreams of doing.
We are inspired by those of you who are at the witness
table, and Mary Tyler Moore and Nick Jonas visited with me in
the office today, and I never knew I was that popular.
[Laughter.]
But the crowd was at my door, and when I tried to sing,
Nick suggested I stick with my day job and not bother.
Mr. Leonard and Dr. Rodgers, thank you all because one of
the things that you are doing by your presence here is
establishing the fact that life continues, that life can be
terrific, and that all of these beautiful children who are here
get an inspiration from you, as all of us do. And we have to
get to work, my friends on this Committee, Senator Collins and
the other Members of the Committee, and make sure that we teach
America how to save money and how to save heart because if we
do the things that are necessary, do the research that is
necessary, we can change all of this, and we will not be
sitting around mentioning the statistics of $174 billion a year
just to care for diabetics. If we want to do something smart,
we have to put the effort in. And I am grateful to you and to
all of you, especially to you guys, for being as inspirational
as you are this day. Thank you very much.
[Applause.]
Senator Collins. Senator Burris.
OPENING STATEMENT OF SENATOR BURRIS
Senator Burris. Thank you very much, Madam Ranking Member,
and Chairman Lieberman, Members of the Committee. It is
certainly an opportunity for me to be able to address this
issue with this importance and being impressed by this
distinguished panel, Madam Chairman. I must apologize because I
am due at another hearing in about 10 minutes, so my leaving
will not be any reflection on my support for this major issue.
It is a pleasure to be here to witness the relationship
that exists between Congress and the Juvenile Diabetes Research
Foundation. It is an effort like this and the continued work of
the National Institute of Diabetes and Digestive and Kidney
Diseases that give diabetes research and education such a
bright future.
I understand that 24 million families are affected by
diabetes. I use the term ``families'' because diabetes does not
only affect individuals; it also affects their support groups
and all the families that are associated with them.
I am especially concerned about the impact of diabetes on
the minority population. Twenty-five percent of African
Americans in this country have been or will be diagnosed with
diabetes. We need to continue to educate and reach out to
minorities that have not had access to the benefits of the
research being conducted today.
I want to thank all of the witnesses who appeared here
today as well as the delegates from the Children's Congress,
this tremendous group of our future right in front of us, who
came here today to raise awareness about this issue.
And, Dr. Rodgers, I just hope that there is some way we can
reach those African American males who fail to really own up to
the fact that they have diabetes and that we can certainly save
ourselves tremendous dollars in health care costs by early
intervention, early treatment, and early diagnosis.
So I certainly will be doing everything I can, and I want
to extend my heartfelt thanks to our witnesses on panels 1 and
2.
Thank you very much, Madam Chairman.
Senator Collins. Thank you. Senator Shaheen, we are
delighted to welcome you today, too.
OPENING STATEMENT OF HON. JEANNE SHAHEEN, A U.S. SENATOR FROM
NEW HAMPSHIRE
Senator Shaheen. Thank you very much, Senator Collins.
Thank you for your leadership in addressing diabetes, and I
thank you and Senator Lieberman for holding this hearing today.
I am very honored to be here to have an opportunity to say
a few words at this hearing. I had the opportunity Monday night
to be at the JDRF dinner and hear from all of you young people
who are here and know what compelling witnesses you are to what
we have to do to find a cure for diabetes.
Like most of us involved in health policy, I have long
supported the importance of research to find cures for diabetes
and other diseases, but this issue really became personal for
me when my granddaughter Ellie was diagnosed about a year and a
half ago. Ellie, where are you?
And so I have seen the challenges that Ellie and her family
face. I know what it is like to test multiple times a day, to
deal with daily injections, to figure out whether you are
eating too many carbohydrates and whether the exercise that you
are doing and the other challenges of daily life are affecting
what kind of injections you need to do, and I know, like all of
you, that a cure is within our reach. And we just have to
support research. We have to make sure that help is there to
find this cure.
I want to thank also the panelists who are here for your
willingness to talk about what it is like to live with diabetes
on a daily basis and what a difference that has made for
everyone who has juvenile diabetes.
I remember when Ellie was diagnosed and thinking about what
her future was going to be, and when she found out Nick Jonas
had diabetes, she realized that everything would be OK, that
she could deal with this.
So thank you all very much for your participation here and
for all of the Children's Congress who are here. Thanks for the
work that you are doing because together we are going to find a
cure for this disease.
[Applause.]
Senator Collins. Thank you. Senator Akaka, I am pleased to
call on you for your remarks.
OPENING STATEMENT OF SENATOR AKAKA
Senator Akaka. Thank you very much, Ranking Member Collins
and Chairman Lieberman. Thank you for conducting this hearing
today, and thank you for your leadership on this important
issue.
Diabetes is a very serious health problem in my home State
of Hawaii. Diabetes is a disease that disproportionately
affects Native Hawaiians, Pacific Islanders, and Asian
Americans. In Hawaii, Native Hawaiian, Japanese, and Filipino
adults are twice as likely to be diagnosed with diabetes as
compared to Caucasian residents.
Diabetes can be extremely difficult for patients to manage.
Taking insulin injections and carefully monitoring blood sugar
levels are not easy tasks. Even with careful management,
diabetes contributes significantly to other health problems,
such as heart disease, stroke, eye disease and blindness, and
kidney disease. However, there are 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.
I also want to thank Ms. Moore and the Juvenile Diabetes
Research Foundation for all of their efforts to improve the
lives of so many people. In addition, I thank all of the
witnesses for appearing today, including Dr. Rodgers, Mr.
Leonard, Mr. Jonas, and our JDRF advocates who are seated here.
I am particularly pleased to see one of my constituents, Devin
Rettke. Will you raise your hand? Hi, Devin. All the way from
Hawaii.
I look forward to hearing from the witnesses who will share
their experiences in managing their diabetes. Again, Chairman
Lieberman, Ranking Member Collins, thank you for holding this
hearing. I look forward to continuing to work with all of you
to improve the lives of individuals suffering from diabetes.
Thank you very much.
Senator Collins. Thank you very much.
Leading off our first panel this morning is Mary Tyler
Moore. Although many of us know her from her extensive work on
television and in film and in the theater, her strong advocacy
on behalf of people with diabetes is why she is here today. And
it has been such a pleasure to work with Mary Tyler Moore over
the years. She is always our lead-off witness every time we
convene the Children's Congress. She serves as the
International Chairman of the Juvenile Diabetes Research
Foundation, so it is a great honor to have her with us today.
Next we will hear from Dr. Griffin Rodgers, who is the
Director of the National Institute of Diabetes and Digestive
and Kidney Diseases (NIDDK) at the National Institutes of
Health (NIH). Dr. Rodgers will highlight the advances and
opportunities in the area of juvenile diabetes research and
will provide us with some examples of the research that is
supported by the Special Diabetes Program.
Our next witness, Sugar Ray Leonard, is one of the
legendary sports icons. A winner of the gold medal in boxing in
the 1976 Olympics, Mr. Leonard's illustrious career also
includes three National Golden Glove titles, two Amateur
Athletic Union championships, and the 1975 Pan-American Games
crown. A champion in the ring, Mr. Leonard is also a champion
for people with diabetes, and he has served as the
International Chairman of the Juvenile Diabetes Foundation Walk
for a Cure.
And last, but certainly not least, what has set young
hearts aflutter in the Congress today, we will hear from Nick
Jonas of the phenomenally successful Jonas Brothers. Nick was
diagnosed with Type 1 diabetes in 2005, but that certainly has
not slowed him down at all. In the last 2 months, Nick and his
brothers have launched a new TV show, released their third
album, and begun a world concert tour.
So we are delighted that all of these distinguished
witnesses could be with us today, and, Ms. Moore, we are going
to start with you. Thank you.
TESTIMONY OF MARY TYLER MOORE,\1\ INTERNATIONAL CHAIRMAN,
JUVENILE DIABETES RESEARCH FOUNDATION
Ms. Moore. Good morning to all of you, Senator Collins,
Senator Lieberman, and Members of this Committee. I want to
thank you for your leadership and commitment to sustaining
robust Federal funding for diabetes research. Your efforts are
resulting in real progress and real hope for millions of
Americans personally affected by Type 1 diabetes.
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\1\ The prepared statement of Ms. Moore appears in the Appendix on
page 30.
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I am honored to be accompanied today by all of these
terrific young delegates and special guests who surround us in
this chamber and join me on the panel. We sincerely thank you
for providing us the opportunity to testify about the issues
that we know all too well--life with Type 1 diabetes and our
hope for a cure.
Ten years ago, Tommy Solo--an 8-year-old JDRF volunteer
from Boston--had a big idea. He was looking for something he
could do to move us closer to a cure, and he thought, ``Why not
have kids with diabetes, like me, go to Washington, DC, and
tell Congress we need their help?''
Even at age 8, Tommy understood, intuitively, what JDRF's
Moms and Dads and people personally affected by Type 1 had
always known: When confronted by challenges to our personal
well-being, the solution starts with our willingness to share
our stories, make our case, and ask others to join us as
partners in our cause.
Senators, we are grateful to you for welcoming our
Children's Congress delegates to these rooms over the years
since, for listening to us, and for remembering us and our
partnership for a cure with your legislative leadership and
support.
But because our work together will not be done until we
have found a cure, here we are again today. More than 150 child
delegates from across the United States and several countries
join me to participate in the 10th anniversary Children's
Congress. We acknowledge the remarkable progress we have made,
and we reflect on the challenges which remain.
As many of you know, I have endured the ups and downs of
Type 1 diabetes for almost 40 years. And as all of these
children and their families can attest, every day tests our
determination to lead a normal life. Each day I check my blood
sugar several times. I count the carbohydrates of what I am
going to eat, I take multiple insulin injections, and I
exercise.
Even with this structured regimen, terrific doctors, and
the loving support of my husband, Robert, my blood sugars can
still fluctuate tremendously. If I do not take enough insulin,
my sugars can go dangerously high--which, over time, can lead
to long-term complications such as blindness, nerve damage,
kidney failure, and a host of other serious ailments. If I take
too much insulin, my sugars can drop frighteningly low, which
can acutely lead to feeling really sick and cold and anxious
and lost and, in turn, lead to unconsciousness, seizures, or
worse.
I actually had my first hint of impending long-term
complications of diabetes in 1981 after only about 11 years of
having this disease. I truly wish the technology that is
available today and the understanding that we now have about
how to manage diabetes was available when I was first
diagnosed. Back then, to get an idea of what your blood sugar
was, we relied on urine tests. They were not all that accurate,
timely, or helpful. I did the best that I could to control my
blood sugars, but it was a really difficult task. And my
doctors, even if they wanted to, could not really push me to do
what was, as a practical matter, not really doable. As a
result, by 1981, I was well on my way to having vision-
threatening diabetic retinopathy.
I was not alone. Diabetic retinopathy is the leading cause
of adult onset blindness.
I was terrified. How was I going to continue the things I
loved most--dancing, horseback riding--if I went blind?
At the time I was diagnosed with Type 1, there was no
simple treatment to prevent diabetic retinopathy. But when my
retinas started to show evidence of damage due to diabetes,
there was, thankfully, a new procedure that was available
called ``laser photocoagulation.''
It was not without its costs, however, because in order to
halt the progression of diabetic retinopathy and save the
``central vision,'' the laser must literally burn holes in the
peripheral retina.
So the combination of the disease itself and its vision-
preserving treatment has resulted in my having a difficult time
seeing when it is dark or when I am in a room that is not well
lit. My peripheral vision, and vision below my waist, is also
very limited. Simple things like navigating curbs on a street
or changes in levels between rooms in an unfamiliar home, or
seeing one of my precious pups taking a nap in an unexpected,
unusual place, or recognizing a welcoming hand that has been
extended patiently waiting for me to shake it are all
challenges of the first order.
For years, I kept the full impact of my diabetes under
wraps. While people knew I had Type 1 and that I was a long-
time, outspoken advocate for a cure and International Chairman
of JDRF, the general public did not know the extent to which
diabetes affected my day-to-day life.
But recently, at the prompting of a lovely young woman
named Diane Revzin, and her father, Phil, I wrote a book about
living with diabetes. Diane is a 19-year-old fellow diabetic;
Phil is a book publisher.
My book is titled ``Growing Up Again: Life, Loves, and Oh
Yeah, Diabetes.'' It chronicles my battles with Type 1 in the
context of my broader life experience and career, and I hope it
informs and even inspires people facing similar challenges.
Though I am not here to promote my book, I am happy to note
that all my proceeds from its sale will be donated to JDRF to
advance research for a cure.
As JDRF's International Chairman, I am actually just one
volunteer in an army of determined moms, dads, children, loved
ones, and friends personally affected by diabetes. We are not
sitting back waiting for the cure. These children before you
have built lemonade stands, created walk teams, held bake
sales, and organized car washes. Most importantly, they have
spoken out about their lives with diabetes and shown, by their
courage and hard work, that they can accomplish anything--
including being an important part of finding their own cures.
Overall, JDRF's efforts have enabled us to contribute over $1.3
billion to diabetes research since our founding in 1970 and
over $150 million last year alone. But curing diabetes is an
enormous task. We cannot do it alone. And that is why we are
here.
We are so grateful that this Committee and Congress as a
whole have been our true partners in the fight to cure Type 1
diabetes and its complications. The Special Diabetes Program,
which has been renewed by Congress four times since it was
first enacted in 1997, currently provides $150 million a year
for Type 1 diabetes research. This critical funding has led to
some remarkable advances--including real progress in developing
new therapies that are potentially life-changing for all of us
sitting before you today.
Dr. Griffin Rodgers, the Director of the NIDDK, will
elaborate more on the scientific progress that we have seen,
thanks to the Special Diabetes Program funding. But there are a
few areas of research that I would like to touch on today
myself.
Researchers are using the Special Diabetes Program funds to
find a way to prevent and reverse diabetic retinopathy. This is
very exciting work, and it gives me great hope, especially for
children and young adults with Type 1. As a result of these
advances, people with diabetes may be able to live with far
less fear of visual loss and have an alternative to laser
surgery.
Major advances are also being made in the development of
new devices called continuous glucose monitors (CGMs). By
measuring blood sugars automatically every few minutes and
graphically showing the results and the up and down trends,
CGMs help people to better understand their diabetes and to
avoid extreme highs and lows.
Teams of researchers are now working hard to connect CGMs
with insulin pumps via a control algorithm--I need to brush up
on my science--thereby creating a truly automated system, an
artificial pancreas. This will closely mimic the blood sugar
control workings of a human pancreas. This intelligent pump
will administer insulin based on a person's blood sugar level
and whether it is rising or falling. Human clinical trials are
already underway, and the early results are very encouraging.
In short, with your help, we are making real progress
toward discovery, development, and delivery of cures and
significantly improving on our health outcomes. To keep this
progress, however, Congress must renew the Special Diabetes
Program in 2010. Without your help, we face a 35-percent cut in
Federal funding for Type 1 diabetes--a cut that could turn hope
into despair. With your help, new life-changing therapies and
cures will finally be within our reach.
Every parent of these delegates here today, every parent of
every child ever diagnosed with Type 1 diabetes makes a promise
to them. We will do everything we can to find a cure for you.
We promise.
As their Chairman and ``oldest delegate,'' I am proud to be
leading our 2009 Children's Congress Delegates in their efforts
this week. As we have started to do in this special hearing,
today our goal is to persuade our Senators and Representatives
to also make a promise. We hope you will ``promise to remember
us'' when you vote on the Special Diabetes Program and other
important issues that affect all of us with diabetes.
The energy and commitment of families affected by Type 1
and the strong support of champions like you on Capitol Hill
make me certain that we will soon be able to turn the promising
research made possible by JDRF and the Special Diabetes Program
into our ``promises kept for a cure.''
Thank you from the bottom of my heart for all that you do
for these children, for me, and for all others who are touched
by Type 1 diabetes. I look forward to continuing to work with
you as we pursue our mutual goal of a cure. And I will be with
you, I promise.
Thank you.
[Applause.]
Senator Collins. Thank you so much, Ms. Moore, for an
excellent statement. Dr. Rodgers, welcome.
TESTIMONY OF GRIFFIN P. RODGERS, M.D.,\1\ DIRECTOR, NATIONAL
INSTITUTE OF DIABETES AND DIGESTIVE AND KIDNEY DISEASES,
NATIONAL INSTITUTES OF HEALTH, U.S. DEPARTMENT OF HEALTH AND
HUMAN SERVICES
Dr. Rodgers. Thank you. Mr. Chairman, Senator Collins, and
Members of the Committee, as Director of the National Institute
of Diabetes and Digestive and Kidney Diseases, I want to thank
you for your invitation to testify at this hearing on Type 1
diabetes. And on behalf of NIDDK and the other Institutes and
Centers at the National Institutes of Health, I am pleased to
report that we are vigorously pursuing research into Type 1
diabetes and its complications--along with the Juvenile
Diabetes Research Foundation and other research partners with
whom we share these important goals.
---------------------------------------------------------------------------
\1\ The prepared statement of Dr. Rodgers appears in the Appendix
on page 34.
---------------------------------------------------------------------------
As Ms. Moore mentioned, support provided by the Special
Statutory Funding Program for Type 1 Diabetes Research has led
to exciting progress, even since I had the privilege of
testifying before you in 2007. But before I tell you about some
of that progress, I would like to take a moment to recognize
the extraordinary efforts and contributions of others who are
testifying here today.
Ms. Moore has been a tireless leader in the fight against
Type 1 diabetes and is a great inspiration to patients, to
advocates, and to researchers around the world. Following his
boxing career, Mr. Leonard turned his attention to another
fight--the fight against diabetes--and has been the JDRF's
International Chair of the Walk for the Cure. And Mr. Jonas has
become a national advocate for young people with diabetes. In
fact, Nick recently worked with our National Diabetes Education
Program to create a new public service announcement campaign,
and he has also teamed up with our Type 1 diabetes TrialNet
investigators to develop a public service announcement on the
importance of participating in research studies.
I also want to acknowledge the children and their parents
who will testify today and who are attending this hearing and,
indeed, the millions of other children and parents across the
country. They are our true heroes in advancing the cause of
diabetes research, and many are taking part in government-
sponsored trials that would not be possible without their
desire and commitment to help prevent and find a cure for
diabetes.
Mr. Chairman, Senator Collins, the need to pursue the
prevention and cure of diabetes through research is greater
than ever. New data clearly indicate that the incidence of Type
1 diabetes is rising in some populations, and this is supported
by evidence from the Search for Diabetes in Youth study, which
is providing the first comprehensive incidence and prevalence
data for diabetes among American children.
And so we are thinking big, working toward a hope for a
cure for those who have Type 1 diabetes and an effective
approach to prevent diabetes in those at risk. It is through
research that we will work toward these goals and have already
made great progress.
This past year, astonishing advances were reported in the
genetics of Type 1 diabetes. Today at least 40 genes are known
to influence the likelihood of developing Type 1 diabetes. That
is four times the number that were available 2 years ago when I
testified before this Committee.
Why is this important? Well, because identifying genes may
lead to potential new avenues for therapeutic and preventive
advances and treatments, and even on a personalized and more
customized basis, it may allow us to direct therapy. Moreover,
because we have identified genetic variants that account for
more than half of the genetic risk, we can identify individuals
at high risk of developing Type 1 diabetes and, thus, give them
the opportunity to enroll in clinical trials aimed at
preventing the disease.
We have also laid the groundwork to discover the
environmental factors that have led some but not all people
with a genetic predisposition to Type 1 diabetes to develop the
disease. The Environmental Determinants of Diabetes in the
Young (TEDDY) has screened over 350,000 newborns for the
presence of the most important genetic risk factor for Type 1
diabetes and has identified 17,000 with this risk factor and
has enrolled now 6,670 children in this study. These children
will be followed until they are 15 years of age so that we can
discover the environmental contributors to Type 1 diabetes.
This achievement represents tremendous progress toward
amassing the most data and samples on newborns at risk for
autoimmunity and Type 1 diabetes in the world.
Discovery of an infectious trigger could lead to a vaccine
to prevent Type 1 diabetes, or the development of dietary
factors could yield a simple dietary intervention to lower the
risk in those at risk for the disease.
In another clinical effort, our TrialNet researchers have
just reported that therapy used in the treatment of non-
Hodgkin's lymphoma and rheumatoid arthritis can substantially
preserve the function of insulin-producing beta cells in people
recently diagnosed with Type 1 diabetes. Patients taking the
medication rituximab had better blood sugar control and
required less insulin than those who took a placebo. We are now
considering how to build on this success and to test whether
rituximab and other treatments with agents called anti-CD3 can
actually prevent Type 1 diabetes.
Other researchers are working toward intervention to treat
and ultimately cure diabetes, such as new sources of insulin-
producing cells. These include induced pluripotent stem cells
which could be derived from a patient's skin, triggered to
develop into insulin-producing cells or pancreatic cells that
do not normally produce insulin but could be programmed to do
so.
This research is at a more preliminary stage in its
investigation, but it is already yielding very promising
results. Approaches such as these could ultimately lead to a
day when people with Type 1 diabetes have easier and better
diabetes control and perhaps are entirely free of injected
insulin, where their bodies once again can produce the insulin
that they need to regulate blood glucose, to avoid both the
acute episodes of low blood sugar, or hypoglycemia, and the
long-term complications associated with high blood sugar.
At the same time, we are working to help those with Type 1
diabetes take the fullest advantage of existing technologies to
control their diabetes. For example, recent data from a JDRF-
funded study showed that CGMs were a valuable tool in patients
25 or older to achieve an impressive lowering of their blood
hemoglobin A1c levels. And new NIH initiatives will study the
way that people use data from these monitors, ultimately to
help them use the devices more effectively.
I would like to close by mentioning the success story of a
person who has reached, I think, the pinnacle of a remarkable
career after 46 years with Type 1 diabetes. Supreme Court
nominee Sonia Sotomayor offers a striking portrait of success
that stems not only from her achievements in the legal arena,
but also from her remarkable vigilance with regard to her
health and the high quality of care made possible by Type 1
diabetes research. Her story reminds us that a diagnosis of
Type 1 diabetes in no way defines or limits the remarkable
potential of children in this room. And it is not a story that
could have been possible decades ago. People with Type 1
diabetes are living longer, healthier lives today than ever
before. Current research offers hope for continuing
improvements in care and perhaps even suggest that we may one
day be able to prevent or cure this disease.
I am grateful for the opportunity to share with you these
few examples of recent advances and ongoing research efforts,
many of which are made possible by the Special Diabetes
Program. We continue to be inspired by the dedicated efforts of
individuals affected by Type 1 diabetes and by organizations
that represent them, such as the JDRF.
We look forward to continuing to partner with the JDRF in
research to combat Type 1 diabetes and its complications, and
we continue to press forward in the fight against diabetes so
that we can help all the children in this room and the many
other Americans whom they represent here today. Improving their
quality of life with the ultimate goal of curing their disease
is the driving force behind all of our efforts.
Thank you, Mr. Chairman and Senator Collins, for your
leadership in calling for this hearing to continue focusing
attention on the importance of Type 1 diabetes research and, of
course, for your continued support for NIH research. And I will
be pleased to answer any questions that you might have. Thank
you.
[Applause.]
Senator Collins. Thank you, Dr. Rodgers. That is a very
encouraging report. Mr. Leonard, thank you for being here
today. Please proceed.
TESTIMONY OF SUGAR RAY LEONARD,\1\ RETIRED PROFESSIONAL BOXER
Mr. Leonard. Good morning Senator Collins, Senator
Lieberman, and Members of the Committee. I truly appreciate
this opportunity to appear before you today, and I would like
to testify about the burden of diabetes and the need for
continued research funding to cure this devastating disease.
---------------------------------------------------------------------------
\1\ The prepared statement of Mr. Leonard appears in the Appendix
on page 51.
---------------------------------------------------------------------------
Once again, I would like to personally thank Senator
Collins for her unwavering dedication to people with diabetes.
And as a diabetes advocate, I know how grateful we are to have
you as one of our champions.
It is so wonderful to be here in Washington, DC, as part of
the Juvenile Diabetes Research Foundation's Children's
Congress. I grew up not too far from here, in Palmer Park,
Maryland. My teenage years were spent in the boxing ring.
During this time of personal accomplishments in the ring,
privately my family faced challenges as my father struggled to
manage his diabetes. We are not alone in this fight.
Nationwide, more than 24 million people have diabetes, a
chronic disease that imposes a huge emotional and financial
burden on patients and their families.
I know the toll that diabetes can take on a family. As I
closed the book on my amateur boxing career, I planned to begin
a new chapter in my life as a college student at the University
of Maryland, but I had to face the reality of my father's
illness and the incredible medical bills that resulted from his
life with diabetes. My decision to turn professional was based
on the desire to help my family cover the costs of my father's
care.
Due to the long list of complications associated with
diabetes, the cost of this disease is overwhelming for any
family. But it is also overwhelming for the Nation and our
health care system. Diabetes costs are currently estimated at
$174 billion each year--$116 billion in direct medical costs
and $58 billion in lost productivity and disability. In
California, where I now live, the direct and indirect costs of
diabetes totaled more than $24 billion in 2007.
Thankfully, the Juvenile Diabetes Research Foundation has
partnered with the Federal Government to make a meaningful
investment in diabetes research. I was proud to serve as an
International Walk Chairman for JDRF, which has provided more
than $1.3 billion in funding for Type 1 diabetes research over
the years. And as Ms. Moore stated, last year alone, JDRF
funded more than $150 million in diabetes research.
With the leadership of Senator Collins and our many other
diabetes champions on Capitol Hill, the Federal Government has
been a key partner along our path toward a cure for diabetes.
We are so thankful to Congress for renewing the Special
Diabetes Program. That program provides $150 million each year
for diabetes research at the National Institutes of Health and
an equal amount for the treatment and prevention of diabetes in
American Indian and Alaska Native populations.
Since its inception in 1997, the Special Diabetes Program
has funded research that has shed light on the causes of Type 1
diabetes, as well as who is at risk for developing the disease.
The research funded by the Special Diabetes Program is unique
because its discoveries are important not only to people with
Type 1 diabetes but also to people who suffer from similar
autoimmune diseases. The therapeutic advances in diabetes
complications made possible through the Special Diabetes
Program also apply to people with Type 2 diabetes, making this
program a critical component of any effort to fight diabetes.
Help us keep up the momentum behind this research by ensuring
the renewal of the Special Diabetes Program.
Life with diabetes is like life in the boxing ring. Some
days you just do not have your ``A'' game and your opponent can
get the best of you. Other days you are managing the fight well
and able to outsmart and outbox your opponent. One of my most
memorable fights was my re-match against Roberto Duran. I lost
my welterweight crown to Duran just a few months earlier, and I
could not wait to get my title back. In the re-match, I fought
a smart and skillful match. With just seconds left in the
eighth round, Roberto Duran turned his back, walked to his
corner, threw his hands up, and said, ``No mas.'' He quit.
Now, it would be easy for these children here today to say
``No mas.'' The fight against diabetes is a tough one. Some
days nothing seems more difficult, more impossible, to battle.
There are days we all think about saying ``No mas.'' But it is
totally clear that these children have fight in them. They are
willing to go as many rounds as it takes to beat this
formidable opponent. And we have you in our corner. Thanks to
congressional support for the Special Diabetes Program, the
advancements made through research are bringing us closer to
the cure that will allow these children to finally knock out
diabetes.
Once again thank you, and God bless.
[Applause.]
Senator Collins. Thank you, Mr. Leonard. Thank you so much
for an inspiring statement.
Mr. Jonas, it is great to have you here.
TESTIMONY OF NICHOLAS J. JONAS,\1\ SINGER, SONGWRITER, AND
ACTOR, JONAS BROTHERS
Mr. Jonas. Good morning. My name is Nick Jonas, and I would
like to thank you for having me here today. I would like to
share my story of living with Type 1 diabetes and talk about
the need to fund research to find a cure.
---------------------------------------------------------------------------
\1\ The prepared statement of Mr. Jonas appears in the Appendix on
page 53.
---------------------------------------------------------------------------
First, I would like to thank you, Senator Collins, Senator
Lieberman, and other Members of the Committee, but specifically
Senator Collins for being such a champion for all of us with
diabetes. Everyone here today for the Juvenile Diabetes
Research Foundation's Children's Congress is grateful for your
leadership on the Senate Diabetes Caucus and your commitment to
people with Type 1 diabetes. We are lucky to have you pushing
for policies that will bring us closer to a cure.
Senator Collins. Thank you.
Mr. Jonas. In one way or another, I have spent most of my
life performing. I have been writing songs since I can
remember, and I love sharing my passion for music. As a little
kid, I sang in the choir at my dad's church and then performed
on Broadway. As the Jonas Brothers, my brothers Joe, Kevin, and
I have written songs, made albums, and toured the country,
playing our music for people all over America.
It was during a concert tour in 2005 that I was diagnosed
with Type 1 diabetes. My brothers were the first to notice that
I had lost a significant amount of weight--15 pounds in 2
weeks. I was thirsty all the time, and I had a bad attitude,
which is unlike me. [Laughter.]
It would have been easy to blame my symptoms on a hectic
schedule. But my family knew I had to get to a doctor.
The normal range for blood sugar is anywhere between 70 and
120. When we got to the doctor's office, we learned that my
blood sugar was over 700. The doctor said that I had Type 1
diabetes, but I had no idea what that meant. The first thing I
did was ask her, ``Am I going to die?'' She assured me that I
was not going to die, but that I would have to manage this
disease for the rest of my life. We went right to the hospital
that night where I spent 3 days, including a crash course on
getting my blood sugar in range and learning all about
diabetes.
It has not been easy, but diabetes technology has really
helped me to manage my diabetes. At first, I took insulin
shots, but it was just too hard on the road to give myself
shots. I switched to a pump, which has been great. Since then,
my A1c has come down, and I have been able to use the pump to
better estimate how much insulin I need based on the
carbohydrates I eat. I am also considering getting a continuous
glucose monitor, but for now, I still prick my finger. I do
that up to 12 times a day, including right before I began this
testimony.
While technology has made it much easier to manage my
diabetes, technology is not a cure. Insulin is not a cure. Like
everyone here today, I know that the promise of a cure lies
only in research. I am grateful that Congress renewed the
Special Diabetes Program last year, which has helped
researchers make important discoveries into what causes Type 1
diabetes. This vital program has also funded research to test
new drugs and therapies that could treat or cure patients with
Type 1 diabetes and may even lead to an artificial pancreas one
day. I ask that each of you join me in supporting the renewal
of the Special Diabetes Program next year so that the
researchers can continue their work on a cure for diabetes. My
life depends on it. All of our lives depend on it.
After I was diagnosed with Type 1 diabetes, I wrote a song
called ``A Little Bit Longer'' about dealing with diabetes. I
would like to submit a copy of the full song for the record,\1\
but I would like to read one of the verses, which explains my
outlook on living with diabetes:
---------------------------------------------------------------------------
\1\ The song submitted by Mr. Jonas for the record appears in the
Appendix on page 55.
---------------------------------------------------------------------------
``All this time goes by / Still no reason why / A little
bit longer / And I'll be fine. / Waitin' on a cure / But none
of them are sure. / A little bit longer / And I'll be fine.''
Diabetes has changed my life. But I know that I have
benefited from the government's investment in diabetes
research. With the help of Congress, I will only have to wait a
little bit longer for a cure.
In the meantime, I have decided not to let diabetes slow me
down. In just the last 2 months, my brothers and I launched a
new TV series, released our fourth album, and began a world
concert tour. My approach to managing my diabetes is to focus
on simple wins--little things I can do each day to achieve my
goals. Over time, these everyday victories can make a big
difference in your life--just like every research advancement
moves us along on our path to find a cure. While on that path,
I want to be a positive face for diabetes. I want to show kids
with Type 1 diabetes--like all the kids sitting with me today--
that they can live their dreams while living with diabetes.
Thank you for the opportunity to appear before you today,
and thank you for your commitment to diabetes research. With
your help, a little bit longer and we will all be fine.
[Applause.]
Senator Collins. Thank you for that. Thank you so much,
Nick. Your song really sums it up so well and is great and
inspiring advice for all the young people who are here.
I want to acknowledge that we have been joined by Senator
Arlen Specter from Pennsylvania. He has been a leading advocate
of NIH funding, and we are delighted that he has joined us this
morning. Senator Specter, thank you for being here. If you
would like one minute, we will give you a moment.
OPENING STATEMENT OF HON. ARLEN SPECTER, A U.S. SENATOR FROM
THE STATE OF PENNSYLVANIA
Senator Specter. I do not think I will need all of the
minute. Thank you, Mr. Chairman and Ranking Member, for
convening this important hearing. This is quite a
demonstration, and juvenile diabetes is an ailment that ought
to be conquered, and can be. And I wanted to come, even though
I am not on this Committee, just to say a word to urge you as
advocates, urge you as lobbyists to get behind additional
funding for the National Institutes of Health.
Ms. Moore joined this crusade about 20 years ago. I have
some pictures of her hanging in my office. And with the
concurrence of Senator Harkin, we have increased NIH funding
from $12 to $30 billion and added $10 billion in the stimulus
package. I would like to see the floor set at $40 billion, so I
came to urge you to utilize your efforts to help raise that
money, which is the best way to cure juvenile diabetes. Thank
you very much.
Senator Collins. Thank you.
Senator Lieberman, do you want to start with questions? We
are going to do very limited questions because we shortly are
going to have to go to the floor.
Chairman Lieberman. Thanks, Senator Collins. I just want to
say a word about Senator Specter. Politics gets a bad name
often for good reason, particularly the kind of legislative
horse trading that goes on here. But earlier this year, when
the so-called stimulus package was up to try to help our
economy recover, create jobs, improve the quality of life, the
truth is that the Democratic Majority Leader was about three
votes short of the 60 votes needed to pass that program. It was
very important to our country. Senator Specter was one of those
potential votes, and Senator Collins was right there with him.
And Senator Specter, supported by Senator Collins, did not ask
for some sort of parochial project. He said, ``I am not going
to vote for this unless you increase funding for NIH up to $10
billion.'' And he was so stubborn. He is really an ornery guy.
[Laughter.]
And supported again by Senator Collins, in the end, to get
their votes, the leadership along with President Obama had to
raise, I think, from $3 or $4 billion up to $10 billion the
amount of money given to NIH. Think of all the good that will
do in supporting research that will lead to better treatments
and cures for diseases like diabetes.
So I want you to join me in a round of applause for Senator
Specter.
[Applause.]
Senator Specter. Thank you.
Chairman Lieberman. Senator Collins, these three witnesses
have been so eloquent. Mary Tyler Moore, Sugar Ray Leonard, and
Nick Jonas, your stories make you not just role models for
people with Type 1 diabetes but really inspirations for anybody
who listened. I do not have a question to ask. I want your
words to stand. I am going to yield to you, Madam Chairman.
Senator Collins. Thank you, Senator Lieberman. I, too,
found the statements so eloquent that there is little to ask.
But let me, nevertheless, just ask a couple of questions.
Mr. Leonard, you brought up a very good point about the
impact of diabetes on the whole family. Could you talk in a
little more detail about your family's struggle in coping with
your father's illness?
Mr. Leonard. When I returned home from the Olympics in
1976, I was ready to attend the University of Maryland. But we
noticed that there was a change in my father's attitude, his
personality, and once he was diagnosed as being diabetic, the
medical bills were astronomical. And for some reason, a friend
of mine told me, he said, ``Ray, if you turn professional, you
can make some money.''
So I turned professional. I became a professional boxer--
because I had no intentions whatsoever. I became a professional
boxer to pay the medical bills. And thank God my father
regained his health, and I said to myself, this is not a bad
career. So I continued. [Laughter.]
I continued on and had an illustrious career.
Senator Collins. Thank you. Dr. Rodgers, I am going to
submit a question to you for the record. It is fascinating
learning about the 40 genes that have been identified. I am
also very interested in environmental triggers and whether the
NIH has been able to isolate any environmental triggers. But I
am going to ask that for the record because I know that is a
long subject.
Let me just thank this panel for your outstanding testimony
and commitment. It really could not have been better. You
helped put a human face on the issues that we are discussing.
The updates on the medical research are inspiring to all of us
and very encouraging, and, of course, Ms. Moore, your being a
champion for juvenile diabetes for so many decades means so
much. Mr. Jonas, your sharing your personal experience I know
is so encouraging to these young people.
So thank you all for being here. We are going to recess for
a half-hour. We will try to reconvene with the second panel at
10:30, or as soon as we can get back. Thank you so much.
[Applause.]
[Recess.]
Senator Collins. The hearing will come back to order. You
are an obedient group. We got it instantly quiet. That is very
impressive. I am delighted to welcome our next panel of
witnesses this morning. It consists of children and family
members who know firsthand what it is like to live with
diabetes.
Our witnesses on this panel are Hannah Ryder of Cumberland,
Maine; Patrick Lacher of South Glastonbury, Connecticut; Asa
Kelly of Charlotte, North Carolina; and Ellen Gould of
Nashville, Tennessee, who will be testifying on behalf of her
children--Patrick, Samuel, Sarah, and Oliver.
So I am delighted to welcome all of you here today. Your
panel is so important to all of us. And, Hannah, because you
and I are both from the great State of Maine, I am going to
call on you first. [Laughter.]
Thank you, Hannah, go ahead.
TESTIMONY OF HANNAH RYDER,\1\ DELEGATE, JDRF CHILDREN'S
CONGRESS, CUMBERLAND, MAINE
Ms. Ryder. Thank you for inviting me to testify. I am
Hannah Ryder, and I am from Cumberland, Maine. Three years ago
my life changed forever when I was diagnosed with Type 1
diabetes.
---------------------------------------------------------------------------
\1\ The prepared statement of Ms. Ryder appears in the Appendix on
page 56.
---------------------------------------------------------------------------
After being in the hospital for 4 days, I hoped that I was
cured when I got home. But I soon figured out that this was not
going away when my parents kept checking my blood sugar, giving
me shots, and measuring all my food. Everyone kept asking me
how I was feeling. Before I could go back to school or play on
a sports team, we had to meet with all of the nurses, teachers,
and coaches, and anyone else that my parents thought could help
keep me safe.
Sometimes I do not like all the attention, but I know it is
the attention that is going to keep me safe, and it is the
attention like this that is going to help find a cure.
Diabetes not only affects me physically, it affects me
emotionally as well. Sometimes I get mad, especially when
people say things like I am lucky I missed a class because my
blood sugar got too low. Or I get sad when people eat some of
my favorite foods and say how good they are, and I cannot eat
them because I have celiac, which a lot of people with Type 1
diabetes have too.
But I feel happy to have family and friends that help me
out, like my walk team, Hannah's Heroes. This year my team did
a bunch of fundraisers. We walked in the Diabetes Walk. We had
a yard sale with all of the stuff my family does not use. We
had a bake sale and a lemonade stand. So far, we have raised
over $5,000. I hope that we raised enough money with our team,
and I hope that Congress gives scientists the rest of the money
that they need because I really do not want other kids to get
diabetes.
In school this year, I had to write a paper about what I
would do if I was President of the United States. One thing I
said I would do is have more walks to raise money to help find
a cure for diseases like diabetes. My mom says that a cure can
be found soon and that doctors and scientists get money that
they need to work on it from walks and from Congress.
So I am doing my part, and my family and friends are, too.
Someday I hope to go to culinary school and open my own small
restaurant. I am really hoping that I will not need to include
a carbohydrate count on the menu.
Thank you, Members of the Committee, and particularly my
Senator, Senator Collins, for helping in the fight to cure Type
1 diabetes. Please keep up the good work, and I will, too.
[Applause.]
Senator Collins. Thank you, Hannah. That was great.
Patrick, please go ahead.
TESTIMONY OF J. PATRICK LACHER III,\1\ DELEGATE, JDRF
CHILDREN'S CONGRESS, SOUTH GLASTONBURY, CONNECTICUT
Mr. Lacher. Senator Collins and Senator Lieberman, thank
you for inviting me to testify today. My name is Patrick
Lacher. I am 13 years old, and I have had juvenile diabetes for
over 3 years.
---------------------------------------------------------------------------
\1\ The prepared statement of Mr. Lacher appears in the Appendix on
page 57.
---------------------------------------------------------------------------
My family and I decided to participate in the 2005 JDRF
Walk to Cure Diabetes near my home town in South Glastonbury,
Connecticut, to support my dad, who has had juvenile diabetes
since he was 19. Little did I know that just 2 weeks later, I
would be diagnosed with juvenile diabetes.
The next 2 days became the hardest in my life. I had a
crash course in how to manage my diabetes. The last thing in
the mind of a 9-year-old is managing diabetes, but I had to
accumulate all that knowledge practically over night.
Even though I had watched my dad take care of his diabetes,
I never realized how much of my day would be spent dealing with
this disease. Though over time it has become easier, I can
never cease to pay attention to diabetes and the daily
challenges it brings. When I go to a friend's house, even for
just a few hours, I have to have a plan. I have to know how
active I am going to be, what I am going to eat, and how both
will affect me. I have to bring my blood sugar tester and other
supplies, such as juice, snacks, or glucose tablets, so I am
always prepared for anything that can happen. My bag that
carries all of these items is like my right arm. I can never
leave it behind. All of this responsibility has been mine since
I was a 9-year-old.
There are many reasons why a cure is important to me. The
most important reason is that it would help not just me, but
the millions of other people living with this disease. Just
think, if we could improve the lives of millions of children
and adults around the world, why wouldn't we? Curing diabetes
would also save our country a lot of money since the cost of
diabetic supplies and health care is enormous.
Another reason a cure is important to me is that it would
make my life a whole lot easier. I would be able to sleep over
at a friend's house without worrying about my blood sugar, not
to mention how worried my parents are when I am away from home.
I would be able to eat just as much as my friends do at
birthday parties, and I would even be able to order dessert all
the time like my little brother does. I cannot wait for that
day. I would not have to carry a bag everywhere I go. I could
be free.
Like Hannah, I am doing my part to help find a cure. With
the support of my family and friends, I have had over 100
walkers on my team in the 2008 Walk to Cure Diabetes. I have
also spoken at the walk and other JDRF functions to help people
understand just how difficult it is to live with diabetes and
how they can help.
From the day I was diagnosed, I always knew in my heart and
believed passionately that we would cure this. And now with all
the advances I have seen in just the past 3 years, I know a
cure is within our grasp. And that is what keeps me vigilant
every day so that my body is ready when a cure is found.
It is my hope that one day I can tell my children and
grandchildren, ``Can you believe I had diabetes?'' And they
will say, ``What is diabetes?'' And I can tell them about how
Congress and JDRF worked together to fund research for the
cure.
Thank you for letting me share my story with you. I look
forward to answering any questions you may have.
[Applause.]
Senator Collins. Thank you, Patrick. Great job. Asa, we are
delighted to have you here today. Please go ahead.
TESTIMONY OF ASA KELLY,\1\ DELEGATE, JDRF CHILDREN'S CONGRESS,
CHARLOTTE, NORTH CAROLINA
Ms. Kelly. Good morning. I am Asa Kelly. I am 16 years old
and from Charlotte, North Carolina. And like my friends Hannah
and Patrick, I am relatively new to the diabetes world. Just
over a year ago, on May 29, 2008, I went to the doctor because
I was tired and thirsty all the time. The doctor ran some
tests, which showed my blood sugar was 362, about three times
the normal. I was diagnosed with Type 1 diabetes and was
immediately admitted to the hospital.
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\1\ The prepared statement of Ms. Kelly appears in the Appendix on
page 58.
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At the hospital, I learned about the different types of
insulin I would have to take until there is a cure. The
diabetes educator taught me how to check my sugar, draw up
insulin, and give myself a shot. She taught me the warning
signs of high and low blood sugar and how to treat them. From
then on I realized that I was in control of my health and that
diabetes is very manageable--a little scary, but manageable.
At first when I was discharged, I was scared about giving
myself insulin without someone constantly watching me, but I
quickly learned. Type 1 diabetes called for some major changes
in my life. Testing blood sugar many times daily, counting
carbohydrates, and checking ketones are just a few things that
I go through.
Finding a cure would relieve a lot of the stress it takes
me and others to be healthy. I could focus on my school work
better and not have to step out of class to deal with a bout of
hypoglycemia, which makes my teachers nervous. A cure would
also take a load off my parents. My parents trust the workers
at my church, the friends who I hang out with, and my school to
take care of me because they are not always present to do so.
Diabetes is a disability, but I am not disabled. Many
people treat me different and feel like I have to be watched
more often. But the truth is I am an active teenager, a diehard
Carolina Panther and North Carolina Tar Heel fan, a scholar,
and a good friend. One of my major goals in life is to actually
go to the University of North Carolina at Chapel Hill to become
a doctor.
I am not going to let diabetes ruin my life. But I deep
down hope that I do not have to contend with the daily
challenges for much longer.
I ask you, as Members of Congress, to support research
issues to find a cure. Over 3 million Americans suffer from
this disease, and many of them are children and teens just like
me and my friends here. A cure would give us freedom to carry
on a normal life without taking a break to check our blood or
have a snack. I want Congress to feel the urgency of this
issue, that it is a daily struggle not just something we can
take a break from doing. It is our life style and all choices
are made due to it. Please continue to support research efforts
to find a cure. A cure would truly change my life, my family's
life, and the lives of almost everyone in this room today.
Thank you.
[Applause.]
Senator Collins. Thank you. Nice job, Asa. That was
terrific. Mrs. Gould, welcome.
TESTIMONY OF ELLEN GOULD,\1\ MOTHER OF DELEGATES PATRICK,
SAMUEL, SARAH, AND OLIVER GOULD, JDRF CHILDREN'S CONGRESS,
NASHVILLE, TENNESSEE
Mrs. Gould. Good morning. Thank you for the opportunity to
speak to you today about my family's story of living with Type
1 diabetes and our hope for a cure. I am Ellen Gould from
Nashville, Tennessee, and joining me are my children: Patrick,
who is 17 today.
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\1\ The prepared statement of Mrs. Gould appears in the Appendix on
page 59.
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Senator Collins. Happy Birthday, Patrick.
[Applause.]
Mrs. Gould. And Sam, who is 12; Sarah, who is 10; and
Oliver, my 5-year-old.
Yes, all four of them have Type 1 diabetes, and helping
them manage their disease can be quite a challenge. Our journey
with Type 1 diabetes started in July 2004 when Patrick was
diagnosed. My husband and I had noticed he was rapidly losing
weight, constantly thirsty, and unusually tired. A trip to the
pediatrician turned into a hospital stay, with the required
boot camp of sorts, where we received a crash course on
diabetes management. And we needed one. There was no diabetes
in our family history.
Patrick quickly learned how to manage his blood sugar, but
for an active teenager going through growth spurts, controlling
his blood sugar was often a challenge. Today, Patrick uses
shots because the years of having diabetes has left scar tissue
where he would insert his infusion sets, so a pump is not his
best option.
Type 1 diabetes hit home again in January 2006. Sarah began
to show the similar symptoms as Patrick had just 2 years
earlier. We were devastated all over again.
Fortunately, her brother was and still is an excellent role
model, and we had a lot of experience with highs, lows, and
sick days under our belt. So she was able to quickly adapt to
the routine. Unlike her brother, she wears a pump, which
requires different prescriptions and different management.
Shortly after Sarah's diagnosis, my husband and I learned
about a clinical trial called TrialNet, which is funded by the
Special Diabetes Program. Researchers were looking for children
whose siblings had Type 1 to see if the children were at risk
for developing Type 1. We immediately enrolled our family.
The initial screening required a blood test. My heart sank
when Sam and Oliver's results came back positive for diabetes
antibodies, meaning they were clearly at risk of developing
full-blown Type 1. Later tests indicated that Sam did have Type
1, although he was not showing the classic symptoms at that
time.
While we were dealing with helping a third child manage
diabetes, at the age of 3, Oliver started taking a pill as part
of the TrialNet study to see if the full onset of Type 1 could
be delayed by months or years. We do not know if he received a
placebo or oral insulin, but last fall he too was diagnosed
with Type 1. He is a real trooper; he tests his own blood sugar
and has learned to handle all the injections.
As you can see, my husband and I have our hands full. While
the kids are very responsible with their diabetes care, they
still need oversight. We are constantly filling prescriptions,
scheduling doctors' appointments, filling out forms for school
and various activities, educating others, and making sure our
kids are safe. We have four other children at home, so you can
only imagine how busy our lives are.
Finding a cure means everything to our family, and we are
willing to be part of the solution even with juggling our
already busy life. We are very active in our local JDRF
chapter. We will do all we can to educate others and raise
funds for a cure. We have participated in research studies and
will continue to do so.
This is not just about the Gould family. It is about the
thousands of children who have to live with this terrible
disease every day. It is about the thousands of children who
are going to be diagnosed with this disease.
While insulin therapy helps us manage this disease, insulin
is not a cure. On many occasions, we carefully measure blood
sugars, count carbohydrates, and inject what we think is just
the right amount of insulin. And it is so discouraging when we
measure just a few hours later and their blood sugar is way
above the normal range. How many high blood sugars are too
many? When will the long-term complications with their eyes,
kidneys, or heart start to show? Sometimes we have to deal with
the low blood sugars, like the Saturday morning several months
ago when we were awakened by Sam, who had collapsed in his
room, incoherent, because of a dangerously low blood sugar. It
took us 20 minutes to get him back to normal. What happens the
next time if we do not hear him?
As their mother, I just want to reach out and make it
better. I cannot. I cannot cure this disease, I cannot make it
better for my kids. I need help.
We are so very grateful that so many Senators and
Representatives have been doing their part by being strong and
vocal supporters of the Special Diabetes Program. It is our
hope that the Special Diabetes Program will continue well into
the future so that clinical trials, such as TrialNet, can
continue and lead to better treatments and eventually a cure
for Type 1 diabetes.
Thank you.
[Applause.]
Senator Collins. Thank you very much. Mrs. Gould, you gave
such moving testimony.
One of the things I have learned about juvenile diabetes is
it affects not just the child or, in your case, the children
who suffer from the disease, but it has an impact on the whole
family. Could you talk to us a little bit more about the impact
on your other four children who do not have diabetes? What is
the impact on their lives?
Mrs. Gould. Well, they know just as much about counting
carbohydrates and giving shots, and they help us, especially
Oliver, test his blood sugar. He is learning to do it on his
own, but sometimes he needs a little help. And Nicholas and
Andrew, who are here with me today, both help a lot. They are
15 and 13. Our two youngest are 3 and 2. So they always ask,
``Well, when am I going to get diabetes, too?'' It is
definitely part of our family.
I think they feel very fortunate that they do not have it
yet, but they go through the trials and tribulations with us
all. And they are each tested every year through TrialNet for
the presence of antibodies, and we are praying every time--we
were just tested 2 weeks ago, the four who are not diabetic--
that they will not have it. But if they do test positive, we
will also enroll them in the study because we are very
committed that research has to have people to participate. And
it is not everybody else's job to cure this. We have to be part
of the cure.
Senator Collins. Thank you.
[Applause.]
Senator Collins. Asa, I loved it when you said that you
have diabetes and it is a disability, but that you are not
disabled. And you have set such high goals for yourself, and I
cannot wait someday to call you ``Dr. Kelly.'' I think that is
just wonderful.
Does it help you keep those high goals to hear from
successful people like Mary Tyler Moore and Nick Jonas and
Sugar Ray Leonard about how they have coped with diabetes
themselves or in their family? Does that help encourage you?
Ms. Kelly. Most definitely, it helps encourage me that this
is not like a life sentence or whatever. I can still live my
life. I think it actually speaks more to the outside public
because a lot of people do not know about Type 1 diabetes
because most of them just know about Type 2, because Type 1 is
less common. It helps them to realize that we are just normal
or whatever, that we had nothing to do with it, that it is just
something that we are just composed of.
Senator Collins. Thank you.
Patrick, could you tell us what you would like people who
do not have diabetes to know about what it is like for those of
you who do, such as your classmates or your teachers? What
would you like them to know?
Mr. Lacher. Well, I do not think a lot of people actually
understand just how much work and effort goes into even just a
normal day with diabetes. You have to test your blood sugar.
You have to count your carbohydrates. You have to bolus or give
yourself a shot, whatever the case may be. And then you have to
also manage your blood sugars in one way or another.
So if everybody could even just understand how hard it is,
I think it would make a whole lot of difference.
Senator Collins. I think you are right. Do you think that
it helped you adjust that you had seen your father cope with
diabetes?
Mr. Lacher. I think my dad's support and having seen him do
it definitely had positive effects because I knew that my dad
has done it, he seems all right. [Laughter.]
Senator Collins. I bet he is better than all right. That is
helpful. Thank you.
Hannah, what is the hardest part of having diabetes for
you?
Ms. Ryder. Probably that you can never take a break. It is
always with you, and my blood sugar never is really in the
middle. I am always really high or kind of low. I think
yesterday was the first good blood sugar I have had in a week.
Senator Collins. That has to be difficult. It really must
be.
Is it also more complicated for you because you have celiac
disease as well? Could you talk to us a little bit about that?
Ms. Ryder. Well, since I cannot have wheat, sometimes if I
feel low, I am at a place where I cannot find food that does
not have wheat in it. So I have to eat glucose tabs or juice,
and that is all I can have if I am low.
Senator Collins. That is a challenge.
I want to thank all of you for coming here today. We are
about to have yet another vote, so rather than trying to go
vote and come back, I think I will just give each of you an
opportunity for any additional comments or anything else that
you would like us to know.
Hannah, is there anything else that you would like us to
know?
Ms. Ryder. No.
Senator Collins. You are all set. Patrick.
Mr. Lacher. No.
Senator Collins. Asa.
Ms. Kelly. No.
Senator Collins. Mrs. Gould. Would any of your children
like to say anything for us?
Mrs. Gould. What would you like to say, Oliver?
Senator Collins. You do not have to. It is not required.
Mrs. Gould. Well, he had asked, ``Well, when is it going to
be my turn to talk?'' So it is your turn, if you would like to
say something, Oliver.
Oliver Gould. I will let Patrick say something.
Mrs. Gould. You want Patrick to say something?
Senator Collins. Oliver has passed the microphone to
Patrick. [Laughter.]
Patrick Gould. I just want everybody to know that a cure is
coming and to hang in there, just hang tight. That is what
keeps me going, is that I know that it will be cured eventually
and it will be cured soon. So everybody just needs to hang in
there and do your best until we do not have to worry about this
anymore.
Senator Collins. Those are great words for us to close on.
[Applause.]
Senator Collins. Well, I, too, have some final words, and
Hannah really reminded me of it, and that is, I know the theme
of this Children's Conference is to promise to remember you,
and I just want to give you my personal promise that I will
remember you, and I will continue to do everything that I can
to advance the research that will indeed someday lead to a
cure.
We have already seen such tremendous progress in better
means of diagnosis, better means of treatment, and ultimately,
if we all continue to push for more research and to work with
the scientists, to participate in clinical trials, and if
Congress continues to listen to you, the advocates, the
families, I am confident that one day when we convene the
Children's Congress, it will be to celebrate a cure.
So thank you, particularly all the children who have come
from all over the country. I want to tell each and every one of
you how important you are to the search for a cure. When you go
see your Senators and your Members of Congress, you help them
understand just how important this is. So you are great
advocates and ambassadors for the cause of juvenile diabetes.
Thanks to your work, we were able to get the research dollars
tripled in the last decade, and with your continued help, we
one day will be here in this very room celebrating a cure.
So thank you very much for your advocacy. It has been a
great honor to be with you here this morning. This hearing is
adjourned.
[Applause.]
[Whereupon, at 11:02 a.m., the Committee was adjourned.]
A P P E N D I X
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