Democracy. [background noises] [background noises] [background noises] [background noises] [background noises] [background noises] [background noises] good morning. Good morning. If we can get everybodys attention. Thank you. Good morning. This here it is that Senate Appropriations would please come to order we are here for a very important reason and the first is to thank all the young people who are here today for your commitment to coming in fighting for yourself and for many others. To talk about the special Diabetes Program and its critical work that supports Life Saving Research for millions of kids and people across our country and the world who are living with type one diabetes. And in particular we are here today to hear from kids living with type one diabetes about why this program matters. Ill before i started i want to welcome all of you to washington d. C. And to congress but i know many of you have traveled from all over the country to be here today. I want you to know that your voices make a huge difference in making sure that Congress Takes action to treat and eventually cure type one diabetes. The special Diabetes Program plays a crucial role in fighting this disease because it supports nih research into type one diabetes that has lead to breakthroughs in Diabetes Prevention and treatment. Given this program does so much good for so many families back home it should be no surprise that has strong bipartisan support here in congress. I was pleased orca senator alexander to reauthorize this program back in 2020 when we led the help committee together. Vice chair collins is such a tremendous leader in that effort and is a tireless champion on this issue as cochair of the diabetes caucus along with senator shaheen. I am very glad to have an vice chair collins who will lead this hearing today. I have heard from so many patients fighting this disease it can be really hard. Here in congress we need to make things easier and give people hope and show we are serious about breakthroughs to permit, treat and cure diabetes. That includes continuing to authorize this Crucial Program and to support it and hopefully reauthorize again this year. We also need to make life saving insulin affordable for everyone. Something senator collins and senator shaheen are working tirelessly on. I am going to keep pushing to grow the bipartisan momentum that we have for fighting this disease with everything we have got it i know with the incredible advocates from this years childrens congress we are going to keep making progress. We are going to keep investing in lifechanging research and eventually she worked type or in diabetes and on that note i am very proud to turn over the gavel to vice chair collins who will lead this hearing. Facts before it senator murray has to leave i want to first thank you for your leadership on this issue. And for allowing me too share the honor of chairing this important hearing. Good morning everyone. Welcome to our nations capitol. This is our 12th childrens congress and the third is since the pandemic. It is wonderful to host you and your families at the Senate Appropriations committee and again i want to especially thank our chair first sharing the honor of chairing this childrens congress. As the founding cochair of the senate diabetes caucus, i have long promoted Diabetes Research as one of my top priorities. Your advocacy for the lifechanging research to prevent, treat, and one day cure diabetes type one diabetes motivates me. All of the terrific children with type one whom i have met over the years. Many i have watched grow up. Children like Aiden Sweeney who i first met at age four. And he turned 21 this year. Ruby whitmore a young teen who is my summer neighbor. Nicole is the main teacher who has lived with diabetes for more than 35 years and she is married to my nephew. And so many more including our main delegate i will be testifying shortly. You inspire me. You inspire all of us. More than 160 delegates have traveled to washington from every state in the union and five foreign countries. In fact this morning i met someone from the United Kingdom who is here as well. You are all here to share your personal stories with members of congress. You will tell us what its like to live with type one diabetes. And why it is critical for congress to fund the research necessary to discover better treatment, more effective technology, and one day a cure. Your personal stories really matter. They motivate senators and representatives to get involved in the cause. And i want to tell you my personal story about how i got involved. One of the very first meetings i had as a brandnew senator in 1997 with who had children with type one. I will never forget this 10yearold boy looking up at me and saying senator collins, i wish i could just take one day off from having diabetes. Christmas or my birthday. And of course he never can. That is why i started the Bipartisan Senate diabetes caucus that very year. Since then federal funding for Diabetes Research has almost quadrupled. The federal government now invest more than one point to billion dollars for Diabetes Research each year. Funding, as a chair at mention, the special Diabetes Program in particular has contributed to phenomenal discovery, including several advancements in spieth last convened. For example Research Conducted by the funded trial net program demonstrated for the first time that early preventative treatment with the drug targeting the immune system can delay the onset of clinical t1 d for some atrisk individuals. The fda also approved the first cell therapy to treat individuals with type one. Stp supported Clinical Trial data that contributed to that advancement. Technology has also advance. I remember the very first childrens congress that id shared, we did not have continuous glucose monitors back then or artificial pancreas system. People had big, bulky pumps with them. They were checking their blood sugar. They were taking injections. We have come a long way. Another important components of the special Diabetes Program supports the prevention and Treatment Services or American Indians and alaska natives who experience type two diabetes at nearly three times the National Average. Without an extension both programs are at risk of expiring at the end of this fiscal year. That is september 30. So we simply must pass legislation to reauthorize stp it has strong bipartisan support, 60 senators signed a letter that senator shaheen and i offered to Senate Leaders advocating for this program. So please ask your senators and your representatives to support the extension of this vital program. And there is encouraging news. Just last month the Senate Health lip legislation labor and Pension Committee on which the chair and i both serve overwhelmingly approved the reauthorization act that i introduced with senator shaheen. Our bill on both components of the special Diabetes Program through december 2025. Plan here is the good news. Our bill contains a 20 million annual increase per program. That would be the first increase in 20 years. So lets get that done. Finally, let me touch on another pressing issue which the chair mention. That is insulin affordability. I know many of you it will educating members about this today. As some of you have experienced firsthand, the cost of insulin has soared in recent years. This life saving treatment has become unaffordable for far too many individuals with diabetes. So we need comprehensive legislation to reform the whole insulin market. And we need to put a monthly cap on the cost. That is split legislation senator shaheen and i have introduced would do. Let me just close by saying it is so inspiring to look out and see the wave of blue in town today. When i was coming into work this morning i met a whole and on your hope for a cure are contagious. And together i am confident we will continue our progress and achieve that goal. Thank you. I now have a brief statement from the cochair of the diabetes caucus, jane shaheen of New Hampshire. She has a constituent is going be testifying before us today. Here is what senator shaheen said. I welcome all of the witnesses and more than 160 advocates that have traveled to washington d. C. To participate in todays 12th annual childrens congress. Your relentless efforts to find a cure for type one and for all of those living with the disease, including my granddaughter are an inspiration. In the particular i want to welcome elyse and her family from New Hampshire whom i had the pleasure of meeting and our states. Elyse is among the very best theres no better advocate for those living with type one. I urge my colleagues to listen to each witness closely truly hear their stories and finally act on legislation to improve the lives of those living with type one. That means increasing investments to research to find the cure such as a special Diabetes Program reauthorization act authored by senator collins and myself. But also it means passing legislation to comprehensively and permanently solve insulin affordability. Namely our bipartisan which senator collins and i authored. And it weird to refer to myself in third person. I am reading senator shaheen statement. Until the day, so we finally have a cure, no patient should be forced to risk rationing their daily insulin. Thank you again for coming today to share your story. I wish you a productive and memorable childrens congress and hope to see you again ndc very soon. Thank you, senator shaheen for that statement. Well, thank you all for being here. Are there any of our members who want to make a very brief statement before we turn our we all set . Our rates. We will introduce our witnesses. Our first witness today is dr. Griffin rogers the director of the National Institute of diabetes and digestive and kidney diseases at the National Institutes of health. He is no stranger to our committee. He is a familiar face to the childrens congress. He assumed his current position in 2007 and has testified before us at each and every childrens congress. I admire him so much and i am delighted to welcome him back. Next we will hear from doctor erin the president and ceo. He is the first person with type one diabetes to lead a jd rf. We had the pleasure of having doctor kowalski testify is part of the 2019 childrens congress that was the last one we had before the pandemic. And i am delighted to welcome him back prior to his appointment as president he served as jd rf chief mission officer. That means he oversaw significant advances in Diabetes Research. Now, our next witness comes to us from a very different background. Song writing and music production. I am pleased to welcome Jimmy Jim Harris to testify before our committee. Jimmy jam is an awardwinning music producer who has been inducted into the rock n roll hall of fame. His son max was diagnosed with type one diabetes at two years old. Jimmy jam is here to advocate on behalf of max who is now a thriving young adult in the sitting right over there. And to inspire other kids and teens living with diabetes. And with due respect to those three wonderful witnesses we are then going to hear from the stars of the show. We are going to hear from two delegates. First maria practice on this. Maria, there i did it from maine, maria is 10 years old and was diagnosed with type one diabetes when she was seven. She is proud to be a type when diabetes advocate and this helped increase awareness of her school. We will also then hear from elyse from New Hampshire. Elyse does not remember life without diabetes she was diagnosed at just over a year old. But she has not let type one diabetes hold her back. She is extremely active teenager. She is an extraordinary athletes. Playing soccer, basketball, and lacrosse. Outside of school and sports elyse is passionate about educating those around her about life with t when d. Thank you all for joining us well start with doctor rogers. Thank you doctor rogers. Lets thank you so much. Chair murray, pfister collins, senator shaheen, members of the committee thank you for this invitation to testify and for your support of type one Diabetes Research. Research supported to the special Diabetes Program has ushered in a new era of type one diabetes management and continues to improve the lives of People Living with this disease. I like to recognize my fellow witnesses, all of you. Everyone here today are true champions and advancing Diabetes Research. Nih Clinical Research studies would not be possible without the participation and support of people like you and those you represent across this country. Thank you. This year we celebrate the silver anniversary for 25 years stp supported research has sought ways to prevent cure type one diabetes and its complications. This enduring investment has enabled us to take on challenges beyond what we could support with nih regular appropriations and to perform critical trials unlikely to be done by the private sector. There is much progress to report since i last testified here in person four years ago. In november of 22 the fda approved the first early prevented treatment that can delay clinical diagnosis of type one diabetes for at least three years. That is three years without having to take insulin or check your blood glucose. Three years towards preventing or delaying diabetes complications. He Research Underlying this landmark approval stem from Clinical Trials conducted by supported type one diabetes trial method. That trial was made possible by decades of nih supported research that builds a paradigm shifting understanding of how type one diabetes progresses from normal glucose levels to clinical disease. That knowledge also help identify potential therapies and made prevention trials possible. Continues to new approaches with trials ongoing others ready to launch. There is also been significant progress on ways to ease the burden of daily glucose management. When i first testified about type one diabetes, 16 years ago the goal was clear. Good and artificial pancreas device into the hands of those who need it. Now we have six artificial pancreas devices on the market. Five of these had stp support in two of those devices supported both the development and the Clinical Trials. Underscoring the value of longterm research support. Importantly some these devices are approved for children as young as to which can be lifechanging for them and for their families. Looking into the future supported the development of the next generation of artificial pancreas including fully Automated Systems were the goal of a biotic pancreas that requires minimal user input and can automate insulin doses along with it was approved just this may. Another Research Focus is ensuring new devices benefit all your concluding groups that are understudied by industry. Finally we continue to search for a biological cure type one diabetes. The high party for people with the disease and their families is understand insulin producing beta cells are lost and how they can be protected and replaced. Scientists are getting new insight into how beta cells develop finding ways to make replacements in the lab. There also devising ways to protect from the bodys immune attack. You might be interested to know stp funded Research Also provides benefits beyond type one diabetes. Blood glucose Management Technologies benefit those with type two diabetes as does research on complications that affects organs like the heart and the eyes. These broad benefits will expand such as Artificial Intelligence and Machine Learning. Apply to the data being generated by supported studies. The incredible progress made possible made possible by the values as a longterm investment in health. But we must continue to build on our remarkable progress. We look forward to achieving our ultimate goal preventing and curing type one diabetes. Thank you and i will be pleased to answer questions and comments when time is available thank you. Thank you very much. [applause] doctor kowalski. Chair murray, vice chair collins, sunder shaheen and members of the committee. And cute for welcoming all of our amazing 2023 childrens Congress Delegates it. Their guardians and our special guests. Also thank you for allowing me too testify before you today. I am honored to be here and be joined by doctor rogers and three of our incredible advocates to highlight the important progress advanced by the special Diabetes Program and our hopes for the future. I am chief executive officer. I am a trained scientist ive been fortunate to work for jd rf for the past 19 years. Four of which in my current role print like every delegate here are too many people across the world my family and i are impacted by type one. My familys experience dates to 1977 will my brother steve out of the blue was diagnosed at just the age of three. That i was diagnosed a few years later when i was 13. Traveling daytoday was difficult. Very, very difficult then and still impacts every aspect of our lives today. We have goo