U.S. GOVERNMENT PRINTING OFFICE

WASHINGTON : 

For sale by the Superintendent of Documents, U.S. Government Printing Office

Internet: bookstore.gpo.gov Phone: toll free (866) 512–1800; DC area (202) 512–1800

Fax: (202) 512–2104 Mail: Stop IDCC, Washington, DC 20402–0001

51–789 PDF 2011

S. Hrg. 111–908 

TYPE 1 DIABETES RESEARCH: REAL PROGRESS 

AND REAL HOPE FOR A CURE 

HEARING 

BEFORE THE

COMMITTEE ON 

HOMELAND SECURITY AND 

GOVERNMENTAL AFFAIRS 

UNITED STATES SENATE 

OF THE

ONE HUNDRED ELEVENTH CONGRESS 

FIRST SESSION 

JUNE 24, 2009 

Available via the World Wide Web: http://www.fdsys.gov 

Printed for the use of the 

Committee on Homeland Security and Governmental Affairs 

( 

(II) 

COMMITTEE ON HOMELAND SECURITY AND GOVERNMENTAL AFFAIRS 

JOSEPH I. LIEBERMAN, Connecticut, Chairman 

CARL LEVIN, Michigan 

DANIEL K. AKAKA, Hawaii 

THOMAS R. CARPER, Delaware 

MARK L. PRYOR, Arkansas 

MARY L. LANDRIEU, Louisiana 

CLAIRE MCCASKILL, Missouri 

JON TESTER, Montana 

ROLAND W. BURRIS, Illinois 

MICHAEL F. BENNET, Colorado 

SUSAN M. COLLINS, Maine 

TOM COBURN, Oklahoma 

JOHN MCCAIN, Arizona 

GEORGE V. VOINOVICH, Ohio 

JOHN ENSIGN, Nevada 

LINDSEY GRAHAM, South Carolina 

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 

(III) 

C O N T E N T S 

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 

Page

IV 

APPENDIX 

Responses to post-hearing questions for the Record from Dr. Rodgers .............. 61 

(1) 

TYPE 1 DIABETES RESEARCH: REAL 

PROGRESS AND REAL HOPE FOR A CURE 

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. 

2 

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 lifethreatening 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. 

3 

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— 

4 

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 necVerDate Nov 24 2008 10:04 Mar 17, 2011 Jkt 051789 PO 00000 Frm 00008 Fmt 6633 Sfmt 6633 P:\DOCS\51789.TXT SAFFAIRS PsN: PAT
5 

essary, 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 

6 

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 

7 

1The prepared statement of Ms. Moore appears in the Appendix on page 30. 

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. 

8 

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 wellbeing, 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. 

9 

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 adVerDate Nov 24 2008 10:04 Mar 17, 2011 Jkt 051789 PO 00000 Frm 00013 Fmt 6633 Sfmt 6633 P:\DOCS\51789.TXT SAFFAIRS PsN: PAT
10 

vances—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. 

11 

1The prepared statement of Dr. Rodgers appears in the Appendix on page 34. 

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. 

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. 

12 

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 

13 

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. 

14 

1The prepared statement of Mr. Leonard appears in the Appendix on page 51. 

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. 

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 diabeVerDate Nov 24 2008 10:04 Mar 17, 2011 Jkt 051789 PO 00000 Frm 00018 Fmt 6633 Sfmt 6633 P:\DOCS\51789.TXT SAFFAIRS PsN: PAT
15 

1The prepared statement of Mr. Jonas appears in the Appendix on page 53. 

tes, 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. 

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. 

16 

1The song submitted by Mr. Jonas for the record appears in the Appendix on page 55. 

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: 

‘‘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.’’ 

17 

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 

18 

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 juveVerDate Nov 24 2008 10:04 Mar 17, 2011 Jkt 051789 PO 00000 Frm 00022 Fmt 6633 Sfmt 6633 P:\DOCS\51789.TXT SAFFAIRS PsN: PAT
19 

1The prepared statement of Ms. Ryder appears in the Appendix on page 56. 

nile 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 halfhour. 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. 

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 

20 

1The prepared statement of Mr. Lacher appears in the Appendix on page 57. 

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. 

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 

21 

1The prepared statement of Ms. Kelly appears in the Appendix on page 58. 

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. 

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. 

22 

1The prepared statement of Mrs. Gould appears in the Appendix on page 59. 

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. 

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. 

23 

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 

24 

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 realVerDate Nov 24 2008 10:04 Mar 17, 2011 Jkt 051789 PO 00000 Frm 00028 Fmt 6633 Sfmt 6633 P:\DOCS\51789.TXT SAFFAIRS PsN: PAT
25 

ize 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. 

26 

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.] 

(27) 

A P P E N D I X 


51789.001
28 


51789.002
29 


51789.003
30 


51789.004
31 


51789.005
32 


51789.006
33 


51789.007
34 


51789.008
35 


51789.009
36 


51789.010
37 


51789.011
38 


51789.012
39 


51789.013
40 


51789.014
41 


51789.015
42 


51789.016
43 


51789.017
44 


51789.018
45 


51789.019
46 


51789.020
47 


51789.021
48 


51789.022
49 


51789.023
50 


51789.024
51 


51789.025
52 


51789.026
53 


51789.027
54 


51789.028
55 


51789.029
56 


51789.030
57 


51789.031
58 


51789.032
59 


51789.033
60 


51789.034
61 


51789.035
62 


51789.036
63 


51789.037
64 

Æ 


51789.038