Sen. Collins the hearing will come to order. Good morning, everybody. It is wonderful to welcome all of you here to washington, d. C. This is our 11th childrens congress, and it is always a privilege to work with jdrf families whose commitment to promoting lifechanging research to prevent, treat, and ultimately cure type i diabetes inspires me. I want to welcome not only our Ranking Members, senator casey and senator scott from florida, but also we have a special guest , and that is the cochair with me of the Senate Diabetes Caucus, senator Jeanne Shaheen of new hampshire. So thank you for joining us here today as well. Let me shorten my opening comments this morning, because we do have votes beginning at 11 00, and i want to make sure that we have time to hear from all of our witnesses. As i said, i want to begin by welcoming the more than 160 children who have traveled to washington from all across the country to share your personal stories. You will tell us what it is like to live with type i diabetes, just how serious it is, and why it is critical for congress to fund the research necessary to discover better treatments, more effective technology, and ultimately a cure. Your personal stories really matter. They motivate senators and members of the house to get involved in the cause. In my case, one of my very first meetings as a brandnew senator was with maine families with children with diabetes. I will never forget a 10yearold little boy looking up at me, and he told me that he wished he could take just one day off from having diabetes, his birthday or christmas. But of course he could not. And that really touched me, and it led me to start the Bipartisan Senate diabetes caucus. So i want to give a special welcome to two delegates from maine, Ruby Anderson from yarmouth, who is going to be testifying, and lydia bryant from ellsworth. I am very proud that you are here representing our great state. Since the last convening of the childrens congress two years ago, we have made remarkable strides with new technological discoveries that are already changing the lives of people with type i diabetes. We celebrated the fda approval of an artificial pancreas system for children ages 14 and older. Now the artificial pancreas is also available for kids who are age 7yearsold to 13yearsold, opening the door for better daytoday management of diabetes. Todays Research Represents tomorrows cure. Just last month, a new study, the first of its kind, illustrated the potential of an immunotherapy drug to delay the onset of type i diabetes by an average of two years. What a significant breakthrough. And these advances have only been possible due to our bipartisan commitment to funding Diabetes Research. Since i founded the Bipartisan Senate diabetes caucus in 1997, federal funding for Diabetes Research has tripled. And these results are, these Research Dollars are yielding results. We now spend more than a billion dollars on Diabetes Research. The special Diabetes Program in particular has contributed to phenomenal discoveries, especially advancements in technology. This Program Provides an additional 150 million each year for type i Diabetes Research and another aim of this program is equally important, the special Diabetes Program also studies diabetes in American Indians and alaska natives, who experience type ii diabetes at nearly three times the rate of the national average. So this special Diabetes Program is important both for people who have type i and also for native americans and alaskan natives. Over the past 22 years, the special Diabetes Program has contributed 2. 8 billion to improve the lives of People Living with diabetes. So by the end of september, we must pass legislation to reauthorize the senate Diabetes Program, and that is what you need to tell all the members of congress. It has strong bipartisan support. 68 senators signed a letter to Senate Leadership that we senator Jeanne Shaheen and i authored, advocating for this program. And i am pleased to report to you that just last week, the Senate Health committee on which i serve approved a five year authorization of the special Diabetes Program. That is the longest authorization ever. So that is really good news. And finally, let me just say that i am very concerned about the spiraling cost of insulin. The cost of managing diabetes is growing at an alarming rate. Between 2012 and 2016, average insulin spending per patient with type 1 diabetes nearly doubled. And last year, a father from maine testified that he turned to drug importation from canada after the price of the 90day supply of insulin for his son with type i tripled to 900. So i am going to put the rest of my statement in the record, so that we can expedite the hearing. But let me just end by telling you two things. First, until last fall, i had no personal connection at all with type i diabetes. Then my nephew married a young woman who has type i diabetes and has her own blog. So i feel like i am now officially part of the jdrf family. And second, it is truly inspiring to look out and see this wave of carolina blue. [laughter] collins i did the best i could to come close to matching it. But your passion and hope for a cure are contagious. And together, i am confident that we will continue the progress and achieve that goal. Thank you. Senator casey. Sen. Casey thank you, chairman collins, for holding this hearing. We are grateful to be back again with so many delegates of the jdrf childrens congress. We want to welcome you back to the senate. I know many of you have been here over many years now. I am pleased to welcome four delegates from pennsylvania. Adriana, whom i will introduce a little bit later, as well as joey, libby, and moraide and their families. It is so important you have joined us. , because finding a cure for type i diabetes requires a combined effort from people of all ages and backgrounds. Advances in treatment and our understanding of type i diabetes has come a long way. In the past decade, more and more people have gained access to continuous glucose monitors , and more recently, the use of the artificial pancreas. In large part, this progress is due to those of you in this room. Young and a little bit older than young. We are grateful that you are here again to bring a sense of urgency to this issue. Many of the advocates who have traveled to washington before to press for funding for this program are doing so again today , and we are grateful. We are pleased to report as , as senator collins said, the extension of funding is already in the works, and i was proud as a member of the Health Education labor and Pensions Committee to support the fiveyear extension, the reauthorization of the special Diabetes Program. This sets up the possibility for the longest extension ever. We need to make sure that the full Senate Passes it, as senator collins said, by the end of september and also that the house does the same. By securing Stable Funding for medical research, that is just one part of the agenda. We must also be sure that each individual and family can afford lifesaving treatment. During a hearing last year, this committee took a magnifying glass to the rising cost of insulin. Just recently, the committee concluded a threepart hearing series on the cost of prescription drugs. It will not surprise anyone in this room that the cost of insulin featured prominently during those hearings as well. Let me summarize why there is such an urgency to address the price of prescription drugs as it applies to todays hearing. Number one, the rising cost of prescription drugs is not occurring in isolation. It is part of a larger challenge that Many Americans face every day, trying to make ends meet. Flat wages and high cost might be the fastest way to say it. For so many families, the cost of prescription drugs is like a bag of rocks thrown on their shoulders every day. In addition to the other bags of rocks they are carrying around. High health care costs, tuition, child care costs, and the like. So we have lots of work to do to make sure we are focused on and getting results and lowering the cost of prescription drugs. We know that less costly insulin is about, oh, maybe only 100 years overdue. As we will hear today, the price an individual or family must pay for a vial of insulin is also impacted by Health Insurance coverage. That is why the Affordable Care act and medicaid are critically important to shield families from very high and onerous outofpocket costs for insulin. In pennsylvania, because of medicaid, insulin for most children is fully covered. That should be the case in every single state. So today, i am introducing the affordable healthcare for children with disabilities act, which will encourage states to adopt policies pennsylvania put in place over 20 years ago. We have a sacred responsibility to children and to young adults and to their parents, who are here today, as well as those across the country, to do everything in our power to make sure we are doing everything we can to make life better. So thank you to chairman collins and all of our delegates and parents and friends and advocates. We are so grateful you are with us today. Thank you. Sen. Collins thank you very much. Our first witness today is a familiar face to our committee, dr. Griffin rogers, the director of the National Institute of diabetes and digestive Kidney Diseases. National institute of health. Dr. Rodgers assumed his position in 2007 and he has testified before us, i believe, six times at six different childrens congress hearings. It is always a great pleasure to hear from him and to get an update on the research that is being done. Next, we are pleased to welcome dr. Aaron kowalski. Dr. Kowalski is the new president ceo of jdrf, and he is the first person with type i 1 diabetes to lead this organization. He has a Strong Research background having served as the organizations officer. Our next witness you may recognize from broadway or his numerous roles on television and in major Motion Pictures such as the titanic or argo. It is the awardwinning actor Victor Garber, and we are so pleased to have him with us today. He has received, and i hope i have the statistics right, five emmy nominations, four tony award nominations, and one Screen Actors Guild award, and there is another, maybe i got those wrong, but he has received a lot, lets put it that way. Because he is such an extraordinary actor. And he also has, which is the most pertinent to this hearing, type 1 diabetes, which he has managed for almost 60 years. Then we will hear from my constituent, Ruby Anderson, who is joining us today from yarmouth, maine. Now i met ruby several times, and it was really fun looking at the pictures of her when she was much younger than the 9yearsold she is now. And she is a great advocate for better treatments and working toward a cure or a means of prevention. I am delighted to welcome you, ruby, here today. It is great to have you. I will now turn it over to the Ranking Member to introduce our final witness from his state. Sen. Casey i am pleased to introduce adriana richards. She is 16 years old. A resident of milton, pennsylvania. She is joined by her mom, kristi. She traveled pretty far to get here. It is not an easy ride. A couple hours at least, and we are grateful you are here. Adriana has lived with type i 1 diabetes since she was five years old. And like delegates today, she has not let the disease slow her down. Along with excelling at her schoolwork, she educates her peers about type 1 diabetes and through instagram and created an Online Support group. She serves as a member of the jdrf teen taskforce, where she mentors newly diagnosed children. She has even published a book about living with type 1 diabetes entitled the real t1d. Adriana, thanks for being here and thank you for being a dedicated advocate for jdrf and bringing your testimony here today and your example in creating a sense of urgency to get the job done here in the senate. Thank you. Collins dr. Rodgers, it is a pleasure to have you back. Dr. Rodgers thank you, chairman collins, senator casey, members of the committee, thanks for this opportunity to testify and for your strong support of type 1 diabetes. Research of stp has allowed us to conduct radical trial that were unlikely to have been done with our regular appropriation or by the private sector. I am pleased to be testifying along with dr. Kowalski, and i would especially like to recognize my other fellow witnesses, Ruby Anderson, adriana richards, and Victor Garber. All of you here today and the people you represent across the country are the true heroes in advancing Diabetes Research. Our Research Studies would not be possible without your participation, your passion, and your commitment. In two years since i last testified, major scientific advances have come from the longterm sustained investment in the stp. Just last month, type 1 diabetes trial net reported truly exciting results. For the first time ever, early preventative treatment was shown to delay clinical type 1 diabetes. In this study, people at high risk for the disease were treated with a drug targeting the immune system, and they had a striking twoyear delay in the progression to clinical type i 1 diabetes. That is two years they didnt have to take insulin, two years they didnt have to check blood glucose, two more years of good health toward preventing or delaying type 2 diabetes complications. It is important to note that this trial, which relied on screening thousands of people to identify those eligible to enroll, would not i really should say could not have been conducted outside of trial net. Looking ahead, there is a cube of other promising agents to prevent type 1 diabetes, and we plan to test those with trial net. There is good news for people who are working every day to manage their type 1 diabetes. Since i last testified, several continuous glucose monitors or cgms have been approved by the fda, including the first cgm that doesnt require a fingerstick calibration. The first fully interoperable cgm and the first fully implantable cgm. Each of these received niddk or sdp support during their department. These approvals come on the heels of the 2016 fda approval of the first hybrid artificial pancreas, Early Development of this device and much of the research of the development toward Artificial Pancreas Technology have been spurred by sdp support. In fact, going forward, our goal is to develop multiple artificial pancreas technologies, so that all people with type 1 diabetes can choose what is best for them. Sdp fills a critical gap by studying population understudied by industry, such as Young Children and older adults. In addition, sdp support niddk, recently funded and developed a pancreas customized to the needs of pregnant women. We want to make sure that people use and benefit from new technologies, so our research is focusing on incorporating these devices and Critical Care and looking for new ways to enhance their usability. But as everyone here knows, managing technology is not a cure. We are also supporting research towards a cure, including understanding the autoimmune attack in type 1 diabetes. Five since i last testified, we are seeing never before seen insight into type 1 diabetes and how it progresses. Ofcan study the interaction individual insulin producing beta cells and other pancreatic cells involved in this autoimmune attack. Complicating this is the Exciting Research to develop islets on a chip, like the one you see before me. Can is empty, but this chip contain beta cells, blood vessels, and other components of the islets needed to function in the body. This tiny but mighty chip can allow us to test new therapies very quickly and efficiently and determine which are likely to be beneficial in Clinical Trials. We are excited about applying other cuttingedge technologies in type 1 diabetes. For example, artificial technologists hold great promise for diagnosing diabetic eye disease, research to combat disease is critical to improving Peoples Health and quality of life. As i hope my testimony has highlighted, our efforts were strengthened by the last renewal, which allows scientists to pursue their longterm projects without interruption. With the incredible progress eady achieved through thank you very much for such encouraging testimony. The trials that are underway are so exciting. Our next witness is mr. Kowalski or dr. Kowalski. Dr. Kowalski thank you. Chairman collins, Ranking Member casey, and members of the committee, thank you for welcoming us here today. The jdrf childrens Congress Delegates sitting here before you,