Chaired By: Senator Susan M. Collins
Witnesses Panel I: Mary Tyler Moore, International Chairman, Juvenile Diabetes Research Foundation; Griffin P. Rodgers, M.D., M.A.C.P., Director, National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health, U.S. Department of Health and Human Services; "Sugar" Ray Leonard, Retired Professional Boxer; Nicholas J. Jonas, Singer, Songwriter, and Actor, Jonas Brothers; Panel II: Hannah Ryder, Delegate, JDRF Children's Congress, Cumberland, Maine; J. Patrick Lacher III, Delegate, JDRF Children's Congress, South Glastonbury, Connecticut; Asa Kelly, Delegate, JDRF Children's Congress, Charlotte, North Carolina; Ellen Gould, Mother Of Delegates Patrick, Samuel, Sarah, and Oliver Gould, JDRF Children's Congress, Nashville, Tennessee.
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SEN. COLLINS: This hearing will come to order.
I so appreciate this opportunity to hold this hearing to examine the devastating impacts that juvenile diabetes has on children and their families. This is the fifth 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 o'clock 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's 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 they are going to be joining us as special members of the committee just for today.
As the founder and the 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 didn't know anything about the disease. But this family taught me so much and I will never forget this 10-year-old 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 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 chronic -- 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 spend 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-sought 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 and funding in Congress. And that's thanks to all of you who are here today. It is that strong grassroots 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 two more years, through to September of 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 hearings 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.
And Chairman Lieberman, thank you and forgive me for beginning early because of the schedule.
SEN. JOSEPH I. LIEBERMAN (D-ID-CT): Thank you, Madame Chair. I just want to indicate for the press here that Senator Collins has not pulled off a coup.
That she is chairing this meeting at my request, in recognition of her principled and really passionate leadership here in the 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, as Senator Collins -- Chairman Collins' ranking member. 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 we never -- 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's generationally affected.
For instance, the younger members of my office, pages and interns, are quite excited that Nick Jonas is here.
I myself am thrilled to be in a room with Mary Tyler Moore and "Sugar" Ray Leonard.
I don't want to date myself with "Sugar," but I would be excited to be in a room with "Sugar" Ray Robinson.
I remember -- anyway, your presence means a lot. And Dr. Rodgers obviously, yours as well. Just to say very briefly, this is an extraordinary story about, sort of 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 get a -- 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 research, 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 doesn't have family members or friends who are dealing with diabetes. I bet that is true of all 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 doesn't either get pushed down or stumble sometimes. It's just the nature of life. The question is, do you get up? And how do you get up. And the reality, as I look at the panel and the beautiful exuberant slightly restless faces --
-- in front of me is that that is what it 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, Madame Chair. I look forward to the hearing; these witnesses and of course the second panel of witnesses including a celebrity of our own from Connecticut. Thank you.
SEN. COLLINS: Thank you, Mr. Chairman. I'd now like to recognize Senator Lautenberg. Senator Lautenberg, thank you for joining us this morning.
SEN. FRANK LAUTENBERG (D-NJ): Thank you, Senator Collins and for inviting me to the committee today. It's a deeply personal issue for me and I appreciate the chance to work with you and Senator Lieberman.
I thank you not only for the invitation, but for the work you've chosen to do here. It touches so many of us. As Senator Lieberman says, there isn't anybody that I know who doesn't 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 child, grandchild, -- her name is Mattie Bear (ph). Mattie, you can raise your hand, please. And she came down with the disease unexpectedly, as it probably always happens. But she is like many others. She's turned to treatment. She's proven something, she's doing well. She's energetic. She plays soccer, she even scores goals and doing everything an 11-year old dreams of doing.
And 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.
But the crowd was at my door. And when I tried to sing, Nick suggested I stick with my day job and not bother. And "Sugar" Ray, Dr. Griffin, thank you all, because one of the things that you're 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 as all of us do.
And we've got to get to work, my friends on this committee. Senator Collins and the other members of the committee, we got to get to work and make sure that we teach America how to save money and how to save hearts. Because if we do the things that are necessary, do the research that is necessary, we can change all of this. And we won't be sitting around mentioning the statistics of $174 billion a year just to care for diabetes.
If we want to do something smart, we've got to put the effort in and I'm 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.
SEN. COLLINS: (Inaudible.)
SEN. : Thank you very much, Madame 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, Madame Chairwoman. And I must apologize because I'm 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 these 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 there are 24 million families affected by diabetes. I use the term families because diabetes not only affect the individuals, but also affects their support groups, and all the families that have to be associated with them.
I'm 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 search out the minorities and reach out to minorities that have not -- have access to the benefits of the research being conducted today.
I want to thank all of the witnesses who appear 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 some kind of way we can reach those African American males who fail to really live up or 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, early diagnosis.
So, I certainly will be doing everything I can. And I want to extent my heartfelt thanks to our witnesses, panels I and II.
Thank you very much, Madame Chairman.
SEN. COLLINS: Thank you.
Senator Shaheen, we are delighted to welcome you today too.
SEN. JEANNE SHAHEEN (D-NH): Thank you very much Senator Collins. Thank you for your leadership in addressing diabetes and thank you -- and Senator Lieberman for holding this hearing today.
I'm very honored to be here to have an opportunity to say a few words to this hearing and 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've got to do to find a cure for diabetes.
Like most of us involved in health policy, I've 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 Elle was diagnosed about a year and a half ago. Elle, where are you?
And so, I've seen the challenges that Elle and her family faces. I know what it's like to test multiple times a day to deal with daily injections, to try and figure out whether you've got enough -- whether you are taking too many carbs and whether you -- the exercise that you are doing and the other challenges of daily life are affecting, what kind of injections you need to do. And 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 Elle 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 okay. That she can deal with it. 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.
SEN. COLLINS: Thank you.
Senator Akaka. Senator Akaka, I'm pleased to call on you for your remarks.
SEN. DANIEL K. AKAKA (D-HI): 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 -- twice as likely to be diagnosed with diabetes as compared to Caucasian residents.
Diabetes can be extremely difficult for patients to manage. Taking insulin injection and then carefully monitoring blood sugar levels are not easy tasks. Even with the careful management, diabetes contributes significantly to the other health problems such as heart disease, stroke, eye disease and blindness and kidney disease.
However, there are promising research efforts under way, 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 Mary Tyler Moore and her 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, "Sugar" Ray Leonard, Nick Jonas and our JDRF advocates who are seated here. I'm particularly pleased to see one of my constituents, Devine Rickey (ph). Will you raise your -- hi, Devin -- and 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 again 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.
SEN. COLLINS: Thank you very much. Leading up 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 the theatre, her strong advocacy on behalf of people with diabetes is why she is here today. And it's been such a pleasure to work with Mary Tyler Moore.
Over the years, she is always our leadoff witness, every time we convene the Children's Congress. She serves as the international chairman of the Juvenile Diabetes Research Foundation. So it's a great honor to have you 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 at the NIH. Dr. Rodgers will highlight the advances and opportunities in the areas 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 include 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 two 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 Mary, we're going to start with you. Thank you.
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.
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, D.C. and tell Congress that 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 your 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 the 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 of Children's Congress. We acknowledge the remarkable progress we've 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, you need the diabetes 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, the terrific doctors, the loving support of my husband, Robert, my blood sugars can still fluctuate tremendously. If I don't 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, to 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 that 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. Well, 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, couldn't 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 a vision-threatening diabetic retinopathy. I wasn't 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 treatments has resulted in my having a difficult time seeing when it is dark or when I'm in a room that isn't 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 is an unfamiliar feeling, or seeing one of my precious pups taking a nap in an unexpected, unusual place, recognizing a welcoming hand that's 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 longtime, outspoken advocate for a cure and international chairman of JDRF, the general public didn't 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 entitled 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'm 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, and 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 can't do it alone. And that's why we're here.
We are so very 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-threatening 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've 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 or 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 -- a 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 towards 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.
For, 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'm 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 with 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 for a cure and I will be with you, I promise.
SEN. COLLINS: Thank you so much, Mary, for an excellent statement.
Dr. Rodgers, welcome.
DR. RODGERS: Thank you.
Mr. Chairman, Senator Collins, and members of the committee, as the director of the National Institute of Diabetes, Digestive and Kidney Diseases or NIDDK, I want to thank you for your invitation to testify at this hearing on Type 1 diabetes.
And on behalf of the 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 Mary 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'd like to take a moment to recognize the extraordinary effort and contributions of others who are testifying here today.
Mary 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, "Sugar" Ray 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 Nick 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 is 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 will not only 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 cure for those who have Type 1 diabetes and an effective approach to prevent those at risk. It is through research that we will work towards 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 Type 1 diabetes. That's four times the number that were available two years ago, when I testified before this committee.
Why is this important? Well, because identifying genes may lead to the 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 therapies.
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 groundwork to discover the environmental factors that have led some, but not all people with the genetic predisposition to Type 1 diabetes to develop the disease. The environmental determinants of diabetes of the young or it's acronym is TEDDY, has screened over 350,000 newborns for the presence of the most important genetic risk factors for Type 1 diabetes, and has identified 17,000 with this risk factor and has enrolled now, 6,670 children in the 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 a tremendous progress towards 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 for a vaccine to prevent Type 1 diabetes, or a 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 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 towards 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 this 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 the JDRF approved study, showed that Continuous Glucose Monitors or CGM 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 for 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's 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 suggests that we may one day be able to prevent or cure this disease.
I'm 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 and research to combat Type 1 diabetes and its complication. And we'll 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'll be pleased to answer any questions that you might have. Thank you.
SEN. COLLINS: Thank you.
SEN. COLLINS: Thank you, Doctor, that's a very encouraging report.
Mr. Leonard, thank you for being here today. Please proceed.
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 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 D.C., 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 my 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 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 list of complications associated with diabetes, the cost of this disease is overwhelming for any family. But it's 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 $24 billion in 2007.
Thankfully, the Juvenile Diabetes Research Foundation has partnered with the federal government to make a meaningful investment in diabetes research. I was proud to serve as the international walk chairman for JDRF, which has provided more than ($)1.3 billion in funding for Type 1 diabetes research over the years.
And as Mary 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 towards 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 Institute 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's 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 auto-immune 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 a boxing ring. Some days, you just don't have your A game (ph), and your opponent can get the best of you. Other days, you're 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'd lost my welterweight crown to Duran just a few months earlier, and I couldn't wait to get my title back. In the re-match, I fought a smart and skillful match and with just seconds left in the 8th 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 that we all think about saying "no mas."
But it's clear -- it's totally clear that these children have fight in them. They're willing to go as many rounds as it takes to beat this formidable opponent. And we have you in our corner.
Thanks to Congress' 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.
SEN. COLLINS: Thank you.
SEN. COLLINS: Thank you, "Sugar" Ray. Thank you so much for an inspiring statement.
Mr. Jonas, it's great to have you here.
MR. JONAS: Good morning. My name is Nick Jonas, and I'd like to thank you for having me here today. I'd 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, 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 policies that will bring us closer to a cure.
SEN. COLLINS: Thank you.
MR. JONAS: In one way or another I have spent most of my life performing. I've been writing songs since I can remember, and I love sharing my passion for music. As a little kid, I sang in the choir of my dad's church, and then performed on Broadway.
As the Jonas Brothers, my brothers Joe, Kevin, and I have written songs, and 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 two weeks. I was thirsty all the time and I had a bad attitude, which is unlike me.
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 of a blood sugar is anywhere between 70 to 120. When we got to the doctor's office, we learned that my blood sugar was over 790.
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 wasn't going to die, but that I'd have to manage this disease for the rest of my life.
We went right to the hospital that night where I spent three 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've been able to use the pump to better estimate how much insulin I need, based on the carbs I eat.
I am also considering getting a continuous glucose monitor, but for now, I'll stick to pricking my finger. I do that up to 12 times a day, including right before I did this testimony.
While technology has made it easier to manage my diabetes, technology is not a cure. Insulin is not a cure. Like everyone here today, I know the promise of a cure lies only in research. I am grateful to the Congress that renewed the Special Diabetes Program last year, which has helped researchers make important discoveries into what causes Type 1 diabetes.
The 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 in supporting the renewal of the Special Diabetes Program for next year so that the researchers can continue their work on a cure for diabetes.
My life depends on it. All of our lives depends on it. After I was diagnosed with Type 1 diabetes, I wrote a song called, "A Little Bit Longer" about dealing with diabetes. I'd like to submit a copy of the full song to the record, but I'd 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"
Diabetes has changed my life. But I know that I've benefited from the government's investments in diabetes research. With the help of Congress, I'll only have to wait a little bit longer for a cure.
In the meantime, I've decided not to let diabetes slow me down. In just the last two months, my brothers and I have launched a new TV series, released our fourth album, and begun 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 on along 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 ---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.
SEN. COLLINS: Thank you, well said.
SEN. COLLINS: Thank you. Thank you so much, Nick. Your song really sums it up so well and it's great and inspiring advice for all the young people who are here.
I want to acknowledge that we've been joined by Senator Specter from Pennsylvania. He has been a leading advocate of NIH funding, and we're delighted that he has joined us this morning.
Senator Specter, thank you for being here. If you would like one minute, well, I'll give you a moment.
SEN. ARLEN SPECTER (D-PA): I don't think I'll need all the minute.
Thank you, Mr. Chairman and the 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'm not on this committee just to say a word urging those advocates, urging those lobbyists to get behind additional funding for the National Institutes of Health.
Ms. Mary Tyler 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 (billion) 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.
SEN. COLLINS: Thank you. Thank you.
Senator Lieberman, do you want to start with questions? We are going to do very limited questions as we're shortly have -- going to have to go to the floor.
SEN. LIEBERMAN: Thanks, Senator Collins. I just want to say a word about Senator Specter. You know politics gets a bad name often for a 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 and 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, you know, didn't ask for some sort of parochial project -- personal -- he said I'm not going to vote for this unless you increase funding for NIH up to $10 billion. And he was so stubborn, you know, he is really an ornery (ph) guy.
And supported again by Senator Collins in the end -- (laughs) -- to get their votes, the leadership, along with President Obama had to raise, I think, from ($)3 or ($)4 billion up to ($)10 billion the amount of money given to NIH.
Think of all the good that 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 Arlen Specter.
SEN. SPECTER: Thank you. Thank you.
SEN. LIEBERMAN: You know Senator Collins, these four witnesses have been so eloquent, Mary Tyler Moore, "Sugar" Ray Leonard, Nick Jonas, your stories make you not just the role models for people with Type 1 diabetes but really inspirations for anybody who listened.
I don't have a question to ask. I want your words to stand. I'm going to yield to you, Madame Chair.
SEN. 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.
"Sugar" Ray, 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 struggle in coping with your father's illness?
MR. LEONARD: When I returned home from the Olympics in 1976, I was ready to attend University of Maryland. But we noticed that there was a change in my father's -- his attitude, his personality, and once he was diagnosed with being diabetic, the medical bills were astronomical and for some reason someone told me -- a friend of mine told me, he said, "Ray, you -- 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 bills, the medical bills. And thank God, my father regained his health and I said to myself, you know, this is not a bad career, so I continued.
I continued long and had an illustrious career.
SEN. COLLINS: Thank you.
The live quorum call has begun, so we're going to have to break now for half hour until 10:30 and then we'll reconvene with the second panel.
Dr. Rodgers, for the record, I'm going to submit a question to you. It's fascinating learning about the 40 genes that have been identified. I'm also very interested in environmental triggers and whether the NIH has been able to isolate any environmental triggers.
But I'm going to ask that for the record because I know that's 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're discussing. The updates on the medical research are inspiring to all of us and very encouraging.
And of course, Mary Tyler Moore, your being a champion for juvenile diabetes for so many decades means so much.
Nick, 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.
MR. : Thank you.
SEN. COLLINS: (Sounds gavel.) The hearing will come back to order. Boy, you're an obedient group. To get it instantly quiet, that's very impressive. I'm delighted to welcome our next panel of witnesses this morning.
It consists of children and family members who know firsthand what it's 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'm 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'm going to call on you first.
Thank you, Hannah. Go ahead.
MS. RYDER: Thank you for inviting me to testify. I'm Hannah Ryder and I'm from Cumberland, Maine. Three years ago my life changed forever when I was diagnosed with Type 1 diabetes.
After being in the hospital for four days, I hoped I was cured when I got home. But I soon figured out that this wasn't 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 the sports team, we had to meet with all the nurses, teachers, and coaches, and anyone else that my parents thought could help keep me safe. Sometimes I don't like all the attention, but I know it's 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 that I'm 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 can't eat them because I have celiac, which a lot of people who are Type 1 diabetic 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 the yard sale with all the stuff my family doesn't 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 don't want other kids to get diabetes.
In school this year, I had to write a paper about what I would do if I was the 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 said that a cure could be found soon, and that doctors and scientists get money that they need to work on it from walks and from Congress.
So I'm 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'm really hoping that there won't -- that I won't need to include any carbohydrate counts 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.
SEN. COLLINS: Thank you, Hannah. That was great.
Thank you, Hannah.
Patrick, please go ahead.
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 three years.
My family and I decided to participate in the 2005 JDRF Walk to Cure Diabetes near my hometown in South Glastonbury, Connecticut, to support my dad who has had juvenile diabetes since he was 19.
Little did I know that just two weeks later I would be diagnosed with juvenile diabetes. The next two days became the hardest of 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 overnight. 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'm going to be, what I'm 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'm always prepared for anything that can happen.
My bag that carries all these items is like my right arm. I can never leave it behind. All 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 can 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'm 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 can't wait for that day. I wouldn't 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've had over 100 walkers on my team in the 2008 Walk to Cure Diabetes. I've 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've seen in just the past three 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 the 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'll say, "What's 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.
SEN. COLLINS: Thank you, Patrick. Great job.
Asa, we are delighted to have you here today. Please go ahead.
MS. KELLY: Thank you. Good morning. I am Asa Kelly. I am 16- years-old, and I'm from Charlotte, North Carolina. Unlike 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 of 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.
Finding a cure would relieve a lot of stress it takes me and others to be healthy. I could focus on my schoolwork 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 the 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 -- (laughter) -- a scholar, and a good friend.
One of my major goals in life is to actually go to the University of North Carolina, Chapel Hill, to become a doctor. I am not going to let diabetes ruin my life. But I deep-down hope that I don't have to continue with the daily challenges for much longer.
I ask you as members of Congress to support research issues to find a cure. Over three 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 our 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 you could take a break from doing. It is our lifestyle 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 almost -- and the lives of almost everyone in this room today. Thank you.
SEN. COLLINS: Thank you, Asa.
That was terrific.
Ms. Gould, welcome.
MS. 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, Sam --
SEN. COLLINS: Happy birthday.
MS. GOULD: 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 of 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 sugars, but for an active teenager going through growth spurts, controlling his blood sugars was often a challenge. Today Patrick uses shots because the years of having diabetes had left scar tissue where he'd insert his infusion sets, so a pump is not his best option.
Type 1 diabetes hit home again in January of 2006. Sarah began to show the similar symptoms as Patrick had just two 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. And while we were dealing with helping our 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 don't know if he received a placebo or oral insulin, but last fall, he too was diagnosed with Type 1. He's 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're 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 isn't just about the Gould family. It's about the thousands of children who have to live with this terrible disease everyday. It's 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 carbs, and inject what we think is just the right amount of insulin. And it's 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, 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 don't hear him?
As their mother, I just want to reach out and make it better. I can't. I can't cure this disease. I can't 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.
SEN. COLLINS: Thank you.
Thank you. Thank you.
Ms. Gould, you gave such moving testimony.
One of the things that I've learned about juvenile diabetes is that 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's the impact on their lives?
MS. GOULD: Well, they know just as much about counting carbs, and giving shots, and they help us -- help especially Oliver test his blood sugar. He is learning to do it on his own, but sometimes he needs a little help.
And Nicholas (ph) and Andrew (ph) 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," you know, and it's definitely part of our family.
I think they are very -- 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 two weeks ago, the four that 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's not everybody else's job to cure this. We have to be part of the cure.
SEN. COLLINS: Thank you.
Asa, I loved it when you said that you have diabetes and it's a disability, but that you're not disabled. And you've set such high goals for yourself. And I can't wait some day to call you Dr. Kelly. I think that's 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've 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. And I think in -- it actually speaks more to the outside public because lot of people don't know about like Type 1 diabetes because most of them just know about Type 2, because Type 1 is less common.
It helps to realize that we're just normal or whatever that we had nothing to do with -- it's just something that we're just composed of, so.
SEN. COLLINS: Thank you.
Patrick, could you tell us what you would like people who don't have diabetes to know about what it's like for those of you who do, such as your classmates or your teacher, what would you like them to know?
MR. LACHER: Well, I don't think a lot of people actually understand just how much work and effort goes into even just a normal day with diabetes. You've to test your blood sugar, you've to count your carbohydrates, you've to bolus or give yourself a shot, whatever the case maybe.
And then you have to also manage your blood sugars in one way or another. So if everybody could just -- even just understand how hard it was and how hard it is, I think it would make a whole lot of difference.
SEN. COLLINS: I think you're right. Do you think that it helps you adjust that you've seen your father cope with diabetes?
MR. LACHER: I think my dad's support and having seen him do it definitely had a positive effect, because I knew that if my dad's done it, he seems all right.
SEN. COLLINS: I thought he is better than all right -- (laughs.) That's helpful, thank you.
Hannah, what's the hardest part of having diabetes for you?
MS. RYDER: Probably that you can never like take a break, it's always with you. And like my blood sugar never is really like in the middle, I'm always really high or kind of low like -- like, I think yesterday was like the first good blood sugar I've had in over a week, so.
SEN. COLLINS: That's got to be difficult, it really must be. Is it also more complicated for you because you have a celiac disease as well? Could you talk to us a little bit about that?
MS. RYDER: Well, since I can't have wheat, sometimes if I feel low, like places, like with like food, they don't have stuff like that don't have wheat in them. So I have to -- just like eat -- go to -- (inaudible) -- juice, and that's all I can have if I'm low.
SEN. 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'll just give each of you an opportunity for any additional comments or anything else that you'd like us to know.
Hannah, is there anything else that you'd like us to know? You're all set.
MS. KELLY: No.
SEN. COLLINS: Okay.
And Ms. Gould?
MS. GOULD: There's something --
SEN. COLLINS: Do any of your children like to say anything for us?
MS. GOULD: What would you like to say? What --
SEN. COLLINS: You don't have to do it. Not required.
MS. GOULD: Well, he had asked, well, when is it going to be my turn to talk?
So it's your turn if you'd like to say something, Oliver.
MR. OLIVER: I want Patrick to say something.
MS. GOULD: You want Patrick to say something?
SEN. COLLINS: Okay, Oliver has passed the mike to Patrick.
There, he's helping out.
MS. GOULD: Yeah.
MR. LACHER: I just want everybody to know that a cure is coming, and to hang in there, just to hang tight. You know, that's what keeps me going, is that I know that it'll be cured eventually and it'll be cured soon. So everybody just needs to hang in there, and do your best until we don't have to worry about this anymore.
SEN. COLLINS: Well, those are great words to --
Well, I too have some final words, and Hannah really reminded me of it. And that is that 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, and I will continue to do everything that I can to advance the research that will indeed some day lead to a cure. We've 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 all, 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're 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's been a great honor to be with you here this morning. This hearing will stand adjourned. Thank you very much.