Skip to main content

tv   Senate Special Aging Committee Hearing on Diabetes  CSPAN  July 13, 2019 1:08pm-2:54pm EDT

1:08 pm
campaigning throughout new hampshire this weekend. c-span has led coverage today at 5:00 p.m. eastern from exeter, new hampshire, with new jersey senator cory booker, and on sunday live at 1:15 eastern, california senator kamala harris speaks in guilford watch our live coverage of them a credit presidential candidates from new hampshire on c-span. watch anytime at and listen with the free c-span radio app. announcer: next, testimony about living with type 1 diabetes. we hear from actor victor garber and a nine-year-old girl from maine. authorization for the special diabetes program expires december 30. this is about one hour and 45 minutes.
1:09 pm
sen. collins: the hearing will come to order.
1:10 pm
good morning everybody. it is wonderful to welcome all of you here to washington, d.c. this is our 11th children's congress and it is always a privilege to work with jd rs families whose commitment to promoting life-changing 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 jean of new hampshire. 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,
1:11 pm
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 brand-new senator was with mena families with children with diabetes. i will never forget a 10-year-old 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
1:12 pm
caucus. 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 children's 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
1:13 pm
age 7-years-old to 13-years-old, opening the door for better day-to-day management of diabetes. today's research represents tomorrow's 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.
1:14 pm
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.
1:15 pm
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 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.
1:16 pm
between 2012 and 2016, average insulin spending per patient with diabetes nearly doubled. and last year, a father from maine testified that he turned to drug importation from canada after the price of the 90 day supply of insulin for his son with type i tripled to $900. i'm going to put the rest of my statement in the record so we can expedite the hearing. but let me just and by telling -- 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.
1:17 pm
i feel like i am now officially part of the jdrs family. and second, it is truly inspiring to look out and see this wave of carolina blue. 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. you,casey: thank chairman collins, for holding this hearing. we are grateful to be back again with so many delegates of the jdrf children's congress. we want to welcome you back to
1:18 pm
the senate. we know many of you have been here for 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 moraine and their families. it is so important you have joined us. 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
1:19 pm
and we are grateful. we are pleased to report 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 5-year 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 life-saving treatment. during a hearing last year this committee took a magnifying glass to the rising cost of insulin. just recently the committee concluded a three-part hearing series on the cost of prescription drugs.
1:20 pm
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 today's 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. 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 only 100 years overdue.
1:21 pm
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 out -of-pocket 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'm 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
1:22 pm
can to make life better. 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. chairman collins: thank you very much. our first witness today is a familiar face to our committee, doctor griffin rogers, the director of the national institute of diabetes and digestive kidney diseases. he is at the national institutes of health. doctor rogers assumed his position in 2007 and he has testified before us i believe six different children's 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 doctor erin kowalski, doctor kowalski is the new president ceo of jdrf and he is the first
1:23 pm
person with type i 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 award-winning actor victor garber and we are so pleased to have him with us today. he has received, i hope i have the statistics right, five emmy nominations, for tony award nominations, one screen actors guild award and there is another, maybe i got those wrong, but he has received a lot, let's put it that way.
1:24 pm
and because he is such an extraordinary actor. he also has which is the most pertinent to this hearing, type i diabetes which he has managed for almost 60 years. then we will hear from my constituents, 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 9-years-old 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
1:25 pm
final witness from his state. >> i'm 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 diabetes since she was 5-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 i diabetes and through instagram and created an online support group. she serves as a member of the taskforce, where she mentors newly diagnosed children. she has even published a book about living with type i
1:26 pm
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: doctor rogers, it is a pleasure to have you back. dr. rogers: thank you, chairman collins, senator casey, members of the committee thanks for this opportunity to testify and for your strong support of type i 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 doctor 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
1:27 pm
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 commitment. in two years since i last testified, major scientific advances have come from the long-term sustained investment in the stp. just last month type i diabetes trial net reported truly exciting results. for the first time ever, early preventative treatment was shown to delay clinical type i 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 two-year delay in the progression to clinical type i diabetes. that is two years they didn't have to take insulin, two years they didn't have to check blood glucose, two more years of good health toward preventing or
1:28 pm
delaying type ii 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 i diabetes and we plan to test those with trial net. there is good news for people who are working every day to manage type i diabetes. testified, several continuous glucose monitors or cgm's have been approved by the fda, including the first cgm that doesn't require a fingerstick calibration. the first fully interoperable cgm and the first fully implantable cgm.
1:29 pm
each of these received niddc 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 of artificial pancreas technology have been spurred by sdp support. our goal is to develop multiple artificial pancreas technologies so that all people with type i diabetes can choose what is best for them. sdp fills a critical gap by studying population under study by industry such as young children and older adults. in addition, sdp support niddk, developed aded and 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 incorporating
1:30 pm
these devices and critical care and looking for new ways to enhance their usability. 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 i diabetes. since i last testified, there has been progress in our ability to study single cells in the pancreas. this is giving us never beforei. this is giving us never before seen insight to type i diabetes and how it progresses. we can now visualize at the same time and study the interactions of individual insulin producing beta cells and other pancreatic cells and immune cells involved in this autoimmune attack. complementing this effort is exciting research to develop eyelets on a chip like the one you see before me here. this is empty, but this chip can contain data cells, blood vessels and other components of the eyelet needed to function in
1:31 pm
the body and this tiny but mighty chip developed with sdp support 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 cutting-edge technologies in type i diabetes. for example, artificial intelligence and machine learning approaches hold great promise for clinical applications, such as diagnosing diabetic eye disease. research to combat these and other complications is critical to improving people's health and their quality of life. as i hope my testimony has highlighted, our efforts were significantly strengthened by the last sdp renewal which allowed scientists to prefer you pursue their long-term research projects without interruption. with the incredible progress already achieved through the sdp and the promise of future
1:32 pm
research we are hopeful we can reach our goal of preventing and curing this disease. i would be pleased to answer any questions you have. thank you. >> 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 children's congress delegates, these amazing kids all have type 1 diabetes, , an autoimmune disease that destroys the cells that make insulin in their pancreas. i live with type 1 diabetes, as does one of my brothers, stephen. these amazing children and their parents worked very hard to
1:33 pm
manage t1d. it is very difficult. but today we can live healthier lives than ever before because of research funded by the special diabetes program. as a scientist by training and now as president and ceo of jdrf i can tell you your leadership and the strong bipartisan support for sdp has led to research breakthroughs, transforming lives and bringing us closer to our ultimate goal, cures for type i diabetes. just last month, as dr. rogers pointed out, a clinical trial showed that a new artificial pancreas system supported by the sdp has helped people maintain more consistent and healthier blood glucose levels. also, the fda approved the first continuous glucose monitor and insulin pump that can work inter-operably. this will allow for people with diabetes to select component devices of their systems without having to put together a do-it-yourself system. this choice is critical as people with diabetes achieve
1:34 pm
better outcomes when they can choose the tools that are right for them. this progress builds on the success of the first artificial pancreas system, which came to the market in 2017 thanks to your leadership, senator collins, which has had a major positive impact for our community. of course, to stay healthy we need access to these advances. and we need access to affordable insulin. it is unacceptable for anyone to ration insulin due to cost. we need the government and the private sector to act now. i want to thank senator collins, senator casey, senator shaheen and so many others for your commitment to this issue, it is so incredibly important. as dr. rogers noted, last month we had exciting news in immunotherapies. a clinical trial funded by sdp and jdrf published results that found a drug can delay the onset of type i diabetes for two years
1:35 pm
in children and adults. this is so important. the delay in onset is likely to have long-term benefits that will have a tremendous impact on our community and the overall health care system. this progress is thanks to leadership and foresight to invest in multi-year funding in sdp research. while there is great progress, we are here because there is still important work to be done. the sdp must continue to invest in innovative immune therapy and beta cell therapy research. we need to understand why the immune system goes awry and how we can eliminate these attacks. we need to understand better what triggers type i diabetes. an environmental determinants study has screened more than 425,000 children to understand what factors trigger the onset of type i diabetes. this sdp-funded study is more than halfway through and it is crucial to be finished.
1:36 pm
i can't overstate how important this trial is. at the same time, we need to reduce the burden from kidney and heart disease. senators, let me tell you that this research is too important to have an expiration date. in 2017 when the sdp renewal was delayed, there were real implications. within trial net, enrollment was postponed in a promising prevention trial. by the time the funding was in place, some of the people who would have been eligible had since developed full onset type i diabetes and were no longer eligible to participate in the trial. we can't allow this to happen again. we are so grateful for the outstanding leadership of the senate diabetes caucus cochair, senator collins and senator shaheen, who championed a letter in support of the sdp that has been signed by 68 senators. the special diabetes program is making a real difference and
1:37 pm
-- in every life i hear impacted by type i diabetes. we need congress to reenact a five-year renewal of the program and keep researchers working without interruption so when these children are my age, they can say they used to have type i diabetes. thank you. >> thank you very much for your testimony. [applause] thank you. mr. garber, welcome and thank you so much for being here today. mr. garber: thank you chairman , collins. oh, that's better. chairman collins, ranking member casey, and members of the committee, thank you for inviting me to testify today. it is an honor to be here with the jdrf 2019 children's congress. i was diagnosed with type i diabetes when i was 11-years-old, nearly 60 years ago.
1:38 pm
but i remember vividly that my diagnosis was a traumatic event for my family and especially for my mother. i have a distinct memory of her standing on the porch as my father drove me to the doctor. the fear and desperation in her eyes remains an indelible image in my mind. whenever i meet the mother of someone with type i, i am brought back to that moment. and to that confusion, panic, uncertainty, which is why i am so determined to do everything i can to help find a cure for this disease. i am here today with these amazing delegates to implore you to keep supporting advances in type one research -- type i
1:39 pm
research by supporting a long-term renewal of the special diabetes program. it has been said before and it will be said again -- after my diagnosis, i was kept in a hospital where i learned to inject oranges with insulin syringes until i was brave enough to try it myself. my new and confusing diet consisted of weighing food on a small scale, and deciphering carbohydrate ratios. i have no idea what that is. which is why i'm still guessing today. in those days, we had to boil syringes to ensure sterility and test blood sugar levels with urine in a test tube. we've come a long way, but not far enough. as i adjusted to my new reality, i was determined that i would not be deterred from living the life i envisioned. when i was 16, i left home to pursue my show business stream. i was a folk singer, dishwasher, played tiny parts on tv shows
1:40 pm
and movies. hard enough for any teenager. but balancing blood sugars with inexplicable highs and lows, making healthy food choices, getting proper rest was daunting. i can only say that my determination and will kept me from just giving up. thanks in large part to the special diabetes program, living with type i diabetes today is vastly different from when i was a teenager. my access to amazing diabetes technology, like a continuous glucose monitor that can be used with different types of insulin gives me constant information to help avoid blood sugar highs and lows. and i am so fortunate to be able to afford insurance that allows me to choose the best insulin pump and glucose monitor for my specific lifestyle. this should be everyone's right.
1:41 pm
my anxiety level has -- [applause] mr. garber: i haven't got much time. my anxiety level has decreased somewhat since those days. living an erratic life in movies, television and theater has become more manageable, thanks to funding for the special diabetes program, which made all these things possible. however, it is imperative that congress provides a long-term renewal of the program, which will ensure the critical research can continue unimpeded, and enable more life-changing breakthroughs for the children you see here today. finally, i would be remiss if i did not tell you how concerned i am about the skyrocketing cost of insulin. the idea that someone has to ration insulin in 2019 due to greed and avarice is unconscionable. no mother in the u.s. should lose her son due to insulin
1:42 pm
rationing, and no father should have to rely on buying insulin from canada to keep his child alive. i am lucky, extremely lucky, to have good health insurance. but i am paying more than i should be for the life-saving drug that i would die without. senators, this is simply unacceptable. dealing with type i diabetes is already hard enough. chairman collins, ranking member casey, senator shaheen and others on this committee, i want to thank you for addressing the insulin pricing issue head on. i beg you to keep up the fight to bring down these costs. as you do, please, keep your commitment to the research our community desperately needs to find a cure for type i diabetes. a cure. we need you to keep the momentum going by renewing the special diabetes program, before it expires at the end of september.
1:43 pm
and put it on stable funding for years to come. if you do that, you will make it easier for all these delegates to live their dreams, and enable them to thrive without the fear of type i diabetes holding them back. thank you, chairman collins. ranking member casey -- chairman collins, ranking member casey, and members of the committee, for your support and your time today. [applause] chairman collins: thank you so much for your testimony. ruby, you're up. collins, ranking member casey, senators, thank you for inviting me to talk to you today. my name is ruby anderson. i am nine years old and just finished third grade in yarmouth elementary school.
1:44 pm
i was diagnosed with type i diabetes just before my second birthday. i don't remember not having type i diabetes. but i am lucky, because i have devices that can help me manage my type i diabetes. i have been using an insulin pump since i was about 3-years-old. it has no tubes, which i like. and i don't have to take shots. but sometimes it hurts when i have to change my pod every three days. a dexcomso been using g6 continuous glucose monitor for over a year. i love it. things have gotten a lot easier. now i can just check my numbers on my phone. my mom even lets me ride my bike to school now, because she can see my numbers on my phone, on phone wherever she is.
1:45 pm
before the g6, i was checking my blood sugar up to 10 times per day. now i still have to prick my fingers, but not for weeks. but as great as my pump and g6 are, type i diabetes is still really hard to manage. i have to count carbohydrates and everything i eat. make sure i am giving myself enough insulin to keep my blood sugar from going too high. if i give myself too much, i go low. even if i do my very best, my numbers can still be way off and i don't feel good. my g6 and pod sometimes alarm when i am in class. at home doing homework, writing, -- playing lacrosse with my friends, and swimming at the beach. it even went off on an airplane. that was awkward. when it goes off, i have to stop and check my numbers. i have to eat or drink when i am low, or take more insulin if i am high. my parents, my brother and sister and friends and teachers all help me if my numbers are too high or too low. i wish my diabetes would just disappear, and senators, i don't want my brothers and sisters to get type i diabetes.
1:46 pm
we need more research to find a cure. we even need better devices. we need to figure out what causes type i diabetes so we can stop it. and all the kids here at jdrf children's congress, we need you to continue to support us. when i grow up, i want to be a scientist, partly because type i diabetes research is so important. and if they haven't found a cure for diabetes by then, i will. [applause] ruby: when we have a cure, i am going to have a party and invite everybody in the whole entire world. [laughter] ruby: senator collins, you will be first on my list. chairman collins: thank you. ruby thank you for listening, : and for all you do for kids like me. chairman collins: thank you so much.
1:47 pm
[applause] chairman collins: dr. rogers, sign her up right now. [laughter] chairman collins: and i am coming to that party. adriana, welcome, we are delighted to have you here. adriana: chairman collins, ranking member casey, senators, thank you for asking me to speak here today. my name is adriana richard. i am 16-years-old and from a small town in central pennsylvania called melvin. i am a proud member of the gds central pennsylvania team task force. last year we raised over $10,000 with our ds1 walk team. 1d,"ote a book, "the real t and started in instagram account to share my tnd story because i am one of many living with diabetes every day. i am not the only one going through this.
1:48 pm
i go to diabetes camp most summers. it is my favorite time of year because i am not judged and i to be myself. i am here today to share my voice as an advocate for people with t1d because i have been motivated by, i have experience. was diagnosed with type i diabetes when i was numb 5-years-old. all i knew of my diagnosis was that my parents were scared for me. am the oldest of four kids and the only one in my family with diabetes. in elementary school, i was sometimes teased for being different or for always being with the nurse. school is already a stressful environment, and having diabetes only makes it more difficult. i have gone through some hard times. a few years ago, i was having really bad loans, which means my sugar was getting dangerously low. the thing is, i didn't know it. i felt fine. i also had really bad highs. in fact, one especially bad time, i had dka, or diabetic ketoacidosis, and was hospitalized. i felt really sick and was in a lot of pain. dka is very serious, as it can lead to a coma or worse. i was constantly battling diabetes and managing every day with no brace. was physically and emotionally exhausted, basically suffering from burnout.
1:49 pm
thankfully, i have been able to manage t1d better over the last year. primarily since i got my cgm.m it catches my highs and lows before they get bad and i can check my levels on my phone. it also alerts my parents, which was a huge relief, because sometimes my phone would alert -- i would worry when i was asleep. before i had to check my levels right before going to bed, and hope that i wouldn't get too low during the night. now, i feel much better when i wake up in the morning. my life with type i diabetes is easier with this technology, which is thanks in part to funding from the special diabetes program. that is why i am here, to ask you to support the stp. we are so close to finding cures for diabetes. and if we stop research now, there is no way we will ever until then -- will ever find it. until then, we need the sdp for research to help our everyday lives of type i diabetes. tell scientists and engineers that things like the cgm have
1:50 pm
changed my life. in fact, after congress i will be taking a day to get my license. i am excited and my parents are, too. that my ctm will help me more easily manage my blood sugar levels while i focus on navigating the road to milton. senators, people with type i diabetes can do anything, we just have extra responsibilities. research funded by the sdp helps people like me, all of us here today. and others responsibilities may ultimately give us a cure, and i am grateful to all the residents of pennsylvania the cost of my insulin is zero dollars because it's covered as lifesaving medicine under medicaid. thank you, senator casey, for your interest in expanding this program broadly so that kids with diabetes and other states may also benefit. thank you all for listening to my story, and thank you for your support for people with type i diabetes. [applause] chairman collins: thank you. thank you very much, adriana. ruby, you have such a joyful,
1:51 pm
positive attitude. and you participate in everything. you don't let your diabetes stop you at all. could you tell us what advice that you would give to another child who has just learned that they have type i? ruby: i would say to be brave and not let diabetes get in your way. chairman collins: i think that's great advice. i really do. dr. rogers, you went through how the technology has changed and the many advances that have been made possible by the special diabetes program. and, in the more than 20 years that i have headed the caucus and worked as an advocate for type i diabetes, i have noticed a tremendous change in the technology. i think about how bulky and big the initial pumps were, and
1:52 pm
where we are now with the artificial pancreas and the closed loop with the continuous glucose monitor. and it truly is amazing. but i would like you to focus a little bit more on the prevention side. i am really excited about the trialnet results that you described. could you tell us what most excites you when you look at prevention and cures? the long-term support of this special diabetes program has really allowed us to invest in the critical infrastructure necessary for trialnet to do and set up these prevention trials. conducting prevention trials
1:53 pm
requires identifying and enrolling people at risk for iype one diabetes -- type diabetes who have not yet developed clinical disease. so finding these people are crucial and it requires screening a lot of people. so far, we have screened over 200,000 people at risk, including 15,000 annually now. and as dr. kowalski says, if you can find them, there is a window of opportunity before they actually develop the clinical disease that you can use for testing them in crucial trials. if you miss that window, they would have to go into a different trial. but as a result of that exciting work that was just reported last month, the next trial is obvious. you want to see whether these particular drugs might have a benefit if you give it a second time. but we have really a whole host
1:54 pm
queuegs that are in the that are just as promising as this one, that with the infrastructure that has been created by the special diabetes program in trialnet, they are ready to go. but but of course, we would not want to start a trial unless we have the funding to know that we can complete it. but thank you for your strong support. chairman collins: thank you. that is very encouraging. mr. garber, you have been known in the diabetes community for those who have really been affected by the skyrocketing cost of insulin. and, we talked a little bit about this this morning. but it is ironic that you are from the very birthplace of the insulin, in london, ontario. and insulin was first discovered in 1921, and has been used in various forms to treat diabetes for nearly a century. and that is why i am personally
1:55 pm
so outraged by the tripling of price. it just doesn't make sense to me. as a canadian now living in new york state, what is your reaction to the extraordinary length that some families are having to go to to get the insulin their children need? mr. garber: you know, part of, i wasn't really as conscious of it until like a year ago, when i started hearing -- i mean, i knew it was a difficult realized, but when i -- i was on insurance. so i was always paying an ok amount of money. and then actually, the woman whose son was rationing insulin, that's what really set me over the edge. i couldn't believe it. and part of it is because i wasn't really paying attention.
1:56 pm
and i just, i thought, this is unimaginable. this is unconscionable. so i just got, i have just been and everywhere i go now people are just saying, what is happening? and i don't really understand how pharmaceuticals -- i don't understand, i think there are too many middlemen that are benefiting, and meanwhile, these children are dying. i don't get it. i just don't get it. and yet, you know, in other states, there is no cost for insulin. so what does that tell you? chairman collins: it is unconscionable, and i want you to know that our committee devoted an entire hearing to the cost of the insulin. and we have the bill. senator casey and i are both on the senate health committee. and we have passed a bill that has several measures and it to -- in it to deal with the rising cost of prescription drugs. but the insulin example is the worst, because it is not as if a
1:57 pm
whole lot of r&d went into the initial investment. mr. garber right. : i think i mentioned to you, it was sold for a penny in the past in london, ontario, so that no one would ever be denied insulin. and that just, that has to come back. chairman collins: thank you. senator casey? senator casey: thank you, chairman collins. i want to start by commending the work of the delegates and in particular, command and salute -- commend and salute the testimony by ruby and adriana. i'm trying to think of, at the age of 9 or the age of 16, if i could do what you have done today. and i am certain the answer is no. and i just am grateful that you are willing to do this, but also, i want you to know, not only in the work you are doing as advocates on this issue, but more broadly, you both have a very bright future. and we may put you in charge of
1:58 pm
some other projects before you leave washington. [laughter] to notecasey: i wanted for the record as well -- as you know, when we have a hearing like this, senators will be back and forth and in and out. so i hope when someone is here and then leaves, you don't attribute that to a lack of interest. senator jones, for example, just indicated to me as he left, he has got to go to a classified hearing in the armed services committee. he is hoping to be back. and i think that's true of a number of senators. so we are grateful that people can see that back and forth when they are balancing hearings in different issues. i wanted to start, though, with adriana. not only because she is from pennsylvania, but that sure helps to have the first question. but it is pretty clear to all of us, as is true, i think, of
1:59 pm
every one of your fellow delegates, that you have not allowed diabetes to control your life. and you have indicated over and over again by way of your example and by your testimony, and otherwise, that that is the case. you mentioned in your testimony, that you published a book on what it's like to live with t1d, and you have actually given it that title. you have also used instagram and other platforms and methods to make sure that you are helping to reduce the stigma. in fact, i just left the hallway that you and i were in, you were doing a television interview. and you sounded really good on television. so you have used every possible resource, every possible opportunity to get the message out. you have also taken on the role as a mentor, as part of the jdrf teen task force. as i mentioned. i guess one of the questions i have, is what questions do you get, adriana? when you're interacting withi gi
2:00 pm
have is what questions do you get when you are interacting with young people or adults. are there common questions, common concerns, or is there a message you want to reiterate today that comes from those questions? i geta: the question asked most is what is on my arm because of my pump. in a store walking around and a little boy or a little girl will ask about it. i make a point to explain to them what it is. people thinkng is, you get diabetes from eating too much sugar. i get that all the time.
2:01 pm
>> it is important to repeat those messages, especially in washington. i want to turn to dr. rogers. i think i speak for a lot of people with the gratitude of everyone in this room when i say thank you for your leadership. the work being done by researchers across the country is very promising. this is bringing us closer to the elusive cure. some of theghlight new and promising research. i will ask you to start with pennsylvania and go beyond there if we have some time. >> absolutely. researchers at the university of heart ofnia are at the
2:02 pm
stp human, network. or hearn for short. including something called a human pancreas analysis program. they are developing some very novel techniques to understand the single cells inside of the pancreas, and how they change, with respect to the progression of the disease. as you understand that at the single cell level, you can begin to think about new targets, or either delaying the progression or potentially curing the disease, if you can hope that progression. the people at the university of pennsylvania are really doing an
2:03 pm
outstanding job. another example is in pittsburgh. university of pittsburgh actually serves as one of these groundnut sites and i talked about in my testimony. they are lining up the patients, getting them in this cure for new preventative strategies. and, we are really excited about the trial that and the participation of people in pittsburgh. >> thank you very much. senator braun, welcome. >> thank you, madam chair. this is important to me. i have learned a lot about autoimmune diseases over the years. crohn's and colitis, digestive disorders, asthma. neurological. why this is so important, because if we find the secret to what causes type i diabetes, i think we are going to unravel a host of other diseases and find a cure. that's why i think it's so important. you keep doing what you are doing and we stay on point here. in my own business, i try to address health care and the cost of it. we shouldn't be rationing medicines that are so important. we shouldn't be grappling with the cost of insurance that is overwhelming. i took on the insurance companies nearly 11 years ago myself. and it was a wrestling match
2:04 pm
that you would not believe but there are ways to address it. what we want to do is keep the best of our healthcare system that gives us technology and breakthroughs, but somehow drive the cost down. and, it would take a whole other time period, but you can do that through being engaged in your own well-being, emphasizing wellness over remediation. finding transparency, and getting competition among the providers, so that we can keep the best of what we have got, and not contend with some of the things that, you know, are the worst about our current system. the other thing would be current budget woes here. this should be something we should never have to consider whether we would have enough money to fund. along with many other things that, you know, center around disease, disasters. some of the things that we should never be worried about, how do we pay for that? because to me it is an important part of what the federal
2:05 pm
government should do. we are running trillion dollar deficits here. one thing as a mainstream entrepreneur, i hope to weigh in on how we get this place in better health, so that we can always be there for good causes like this. the question i want to drill in on, when it comes to the particular disease of type i diabetes, what i have learned is there is generally a genetic predisposition to almost all of these autoimmune diseases. and an environmental trigger that might be part of it. can you explain to us, and i like the fact that you are getting down to single cell analysis. seems like that might get us on the right trail, when it comes to type i diabetes, is it more of a genetic predisposition? or environmental trigger? or that mysterious combination of both? >> that's an excellent question senator braun. type i diabetes is a disease that is largely genetic.
2:06 pm
in fact, type i diabetes, we know more about the genetics of type i diabetes. 90% of the attributable genetic risk is already known for type i diabetes. first degree relatives of people with type 1 diabetes have about 15 fold increased risk of developing the disease. and that is why we screen these relatives of people with type i diabetes in order to put these -- them in these prevention trials once they develop it. now, you are right. just because you have the genes and the genetic risk, doesn't mean that you are absolutely going to develop the disease. there is something in the environment that triggers that risk, and makes that risk a reality. and that is the reason that we have an ongoing study called teddy. in government, everything is an acronym. teddy stands for the environmental determinants of diabetes of youth. in the study, we have to screen about 425,000 individuals in order to get 6000 individuals who are going to be following
2:07 pm
from birth to the age of 50 and 2025. and then we are collecting all types of samples. blood samples, urine samples, saliva, stool samples, we are getting medical records on the. -- them. we are understanding outbreaks within schools and other environments. and from that and all the samples that we are collecting, we are doing these studies and using big data to analyze what it is in the environment that actually is triggering that. if we knew, if it turns out it's a virus, for example, it is likely that we can make vaccines to prevent people from developing the immune. or if it is something in the diet, for example, one can suggest that dietary restrictions. so, i would say that type i diabetes is the best example of this combination of genetic risk with environmental factors.
2:08 pm
and, we will understand that by 2025. and with those it's probably not , just one factor. it is probably multiple factors. >> thank you. and, i have got to go to an environment public works committee meeting where we are talking about roads and bridges. but, thank you for the attendance. since i have been here six months, this was the best showing of any committee. it is important to keep up the passion so that we get the message. and again, i think you lead in the autoimmune category. and if we find the cure, it is going to benefit a lot of other ailments as well. thank you so much. senator collins: thank you. senator cinema. >> thank you, chairman collins and ranking member casey for hosting today's important hearing on the special diabetes program. i also want to give a shout out to our children's congress delegates. especially to grant from gilbert
2:09 pm
arizona and rachel from flagstaff. are they here? racial grant is here. , is grant here? oh, my gosh. you can do that all day. so, grant, age 5 was diagnosed with type i diabetes just a few days before his second birthday. he was recently recognized for raising almost $50,000 for jdr f. and he would like to be a firefighter when he grows up. but, he is already a hero to so many of us in arizona. rachel is 16. she is managing multiple chronic conditions, but that has not slowed her down. she likes to hike, lift weights, and has excelled in both varsity volleyball and swimming. i could take some swimming tips from you. you are really an inspiration to me. grant and rachel are two young arizonans who are in dc today, representing more than 750,000 arizonans living with diabetes.
2:10 pm
i am grateful for the advocacy and look forward to working with them to make sure arizonans get the healthcare they need. i also would like to thank our witnesses for their testimony, and now jump into a few questions. my first question is for dr. kowalski, but i would encourage any of our witnesses to weigh in. in 2019, the arizona department of health services published its first-ever diabetes action plan. the report noted that not all health plans in arizona covered diabetes self-management education, which are programs that help patients learn about managing their diabetes. i am proud to cosponsor legislation introduced by senator faye shaheen and chairman collins which would expand education programs from medicare beneficiaries. it is innovative technologies and new smart insulins become available, education will be crucial to helping patients make informed choices about the care and learn about financial assistance programs as needed. so, dr. kowalski, what areas prevent patients from accessing diabetes management resources? and what more can be done to ensure that such, is available to all newly diagnosed patients with diabetes?
2:11 pm
>> thank you, senator. that's an excellent question, because diabetes is a unique disease in that you are dosing a very dangerous drug every day, on your own. and only see the doctor every 3 to 6 months. so, you are doing this and it does require significant education. there are barriers. cost can be a barrier. we have heard about the cost of insulin. but it is really insurance coverage for diabetes treatments across the board, whether it is pumps or sensors are education -- or education and doctors visits. it is a barrier for many families. and then, there is simply not enough diabetes educators and diabetes and endocrinologists specialized in type i diabetes out there. in a state like arizona where folks may have to drive long distances, take off from work. that's a significant burden on families. so, every family in this room knows that education plays an
2:12 pm
incredibly important role when you are making a decision with the drug that, if given too much, can cause hypoglycemia and be very dangerous. these programs play a significant role in the health of our community. >> thanks. my next question is for dr. rogers. your testimony placed a high priority on research and impact of new technologies and special populations, such as children, older adults and pregnant women. i agree. and also believe that that means increasing our investment in the special diabetes programs for indians. since the program was created in 1997, diabetes rates among night -- among native populations have dropped by 54%. and tribes have the resources to more effectively manage diabetes related complications such as kidney and heart disease. for example, the navajo nation special diabetes project runs the window rocks sportscenter as a community resource to educate members on diabetes management, and also free health assessments.
2:13 pm
can you share with the committee any specific insights from recent research that would be of interest to our tribal partners? are there barriers to including more tribal members and other populations in research and clinical studies? >> thank you. well, the, as you mentioned, the special diabetes program, and is -- as chairman collins mentioned, has the additional special diabetes program in indians, or is dpi. and of course working in consultations with indian health services in the tribal leadership council, they have coordinated the provision of care in many sites which actually explains the drop in some of the complications that we have seen. but, nonetheless, native americans have the highest risk for type ii diabetes of any population actually in the country. we have been working closely
2:14 pm
with the sdp program that we have, in conjunction with our sister organization, the cdc. do a study called search, in two -- to do a study called search, in which we are looking at the onset of diabetes in individuals up until the age of 19. diabetes of the youth. we are seeing a growth in type ii diabetes in native american populations. this early information provides us to get them involved more and put them in trials and in treatment trials, because i can tell you that type ii diabetes in children is extremely severe disease as well. search also has indicated one other thing, which is actually a follow-up to senator braun's comments, that we are seeing an increase in the incidence of type i diabetes across all groups over the last 10 years. but particularly, in certain
2:15 pm
underrepresented groups previously. particularly not, non-hispanic whites. i'm sorry, hispanic population. and in men, the genes are different, which means that it's not the standard, the genes that i talk about in terms of genetic risk. which means, that there is something in the environment that even triggering the autoimmune disease at a greater frequency. that is something that we have to understand. how the sub populations are reacting to the environmental changes, and hopefully, our continuing support of the sdp. we can understand the heterogeneity of the disease as it affects different groups. senator collins: thank you. senator scott, we are delighted to have you here today. >> thank you, madam chair. to the panel, thank you all for being here this morning. to the kids, god bless you. it is certainly encouraging and exciting to see so many advocates participating in this country. i will say that your advocacy is powerful.
2:16 pm
i am in -- and advocate for you all because of a friend of mine who was diagnosed around 9-years-old. guy named billy siegler, who today is 53-years-old and married. his son is now looking at going to the medical university of south carolina, perhaps in part because his father's challenge of type i diabetes. so, your future is incredibly bright. one of the things i love about the hearing to say is that we are witnessing around the country, hopefully, folks are watching powerful advocacy come to life. and, there are 3 advocates from south carolina who are here today that i would like to highlight. one of the things i have learned by reading through so many of the bios is that y'all are not just advocates for type i diabetes. many of you are advocates for type two diabetes. you are also advocates in many different ways. the three individuals that i
2:17 pm
will talk about are classic examples of what's possible. hannah from lake wylie, south carolina. she is 17-years-old. is she with us? there she is. there she is. at eights diagnosed years old. she now enjoys participating in cross-country and track and field. not only from an athletics perspective, but also, a type i diabetes advocate perspective. participating in sports, she has been able to spread awareness about t1 d. to her peers, as well as the prevention of type ii. thank you for your advocacy. we also have with us, katie. who is 14-years-old. she was diagnosed with diabetes at age five. she lives in charleston, south carolina, my hometown. is she here? thank you. god bless you. she is a talented musician. this is pretty impressive. is is accurate, katie? let me know if i'm embellishing
2:18 pm
at all, ok? because politicians do that sometimes. not me, of course. you are good at many instruments, including the piano, organ. cello. cello? pretty good? guitar. and percussion. i will have you know that when i was in the third grade, i played the cello. and they came and took it back. i'm not sure what that says about me, but is nothing positive. she and her entire family advocate for type i diabetes funding with other jdr s advocates. william, who is age 14 from sunbelt south carolina. william, what is up? how you doing, man? for those of you not from south carolina, green waves is a wonderful high school to attend in south carolina. william was diagnosed at num -- at three years old. william is an honor student. honor student? you make really good grades? william is an honor student.
2:19 pm
he is also a very good tennis player. accurate? awesome. awesome. these kids are so humble. we could use that in congress. thank you very much. when william isn't on the tennis court, or in the classroom, you can find him enjoying the outdoors, particularly the water or on the golf course. william is also an active advocate for diabetes. he is involved in a number of events. one of the things i am so excited about, when i listen to the stories and i hear and read about the involvement, is, if we can have more folks like y'all helping us understand and appreciate the significant
2:20 pm
impact of funding can have on combating the disease, i think we can make, not steps forward, but leaps forward. so let me use the balance of my time, dr. rogers, to ask you a question about the events as it happened over the last 4-5 years, and in a perfect world with the upper funding, what could their lives be like in 20 years? well, the advances that have happened in the last 4 years have really been extraordinary. following the first fda approval for an artificial pancreas, there are at least four that we currently -- four important international studies using various combinations of these technologies, including one technology that not only develops or delivers insulin, but also glucagon in a manner very analogous to what the pancreas does. so, for example, the eulogy to have interchangeable parts, interoperability, dr. kowalski mentioned.
2:21 pm
and, using these technologies now, we really want to push the limits of put these in real life situations over extended periods of time, over a broader age groups is what we are currently testing. so, hopefully, the results of that results, the results of those research efforts, will be useful for kids here, so that they will be able, along with a healthcare provider, to pick the best instrument and ap technology to use what works for them. again, that is just technology. we really are sort of looking at cures. so, other things that happened in the last few years is, actually thinking about a way to get the cells that make the insulin from an individual and get them back, in terms of transplantation by using the person's own cells and capsule leading them in a device that would be impermeable to the
2:22 pm
immune attack that occurs as a way to correct them. and of course, in the prevention arena, you have heard about what we mentioned is, this one treatment, there are several others just lined up, that we think, you know, within the next several years might be more readily available. but also, ultimately, we want to find a cure. and that cure can be directed at whatever that trigger is that turns on the immune system in each individual. that we would like to learn, in order to prevent that from happening. i think that is a real possibility for the kids who are assembled before you today. and i am very excited about the possibility. >> thank you very much, mr. garber. thank you for your willingness to be an advocate. we do miss you on the legends of tomorrow. >> thank you very much.
2:23 pm
>> senator robeson. >> thank you, madam chair. thank you all for being here. i have to tell you, this is, i want to say, the best looking, most enthusiastic, the most passionate, infectious and a good kind of away, group that we have had before us. and i know that whatever you all do, from what you have learned here, to your advocacy, your passion, your commitment, your willingness to stand up, you are going to be great. what ever your future is. i have got to give a shout out to a couple of nevadans, where are you charlie bell? ashley bellows? there you are down here. go nevada. they are great advocates for what they are doing here for jdr
2:24 pm
fn for all the other things in their life. every parent here, any parent watching out there, be very, very proud of these young kids. so, what i want to say is that special diabetes program, of course combined with the hard work of jdr f, to really pave the way for innovative research on type i diabetes, leading to new therapies, innovative technology and progress toward secure. if progress is particularly meaningful to nevada. because diabetes is an increasingly common condition that affects nevadans at higher rates than the national average. excuse me. i have allergies today. roughly 12% of adults living in nevada have one of the two types of diabetes. excuse me. last week i visited the reno/sparks indian county. there is a tribal health clinic there. we discussed the higher rates of diabetes among tribal members. the diabetes has a heavy impact in patients at this clinic. it is a stark reminder of why we must continue to invest in critical programs to ensure the patients have access to the best care possible.
2:25 pm
so got to the doctors here today, i want to talk a little bit about the artificial pancreas. where that is at and how it's going to help kids in the future. >> thank you. the artificial pancreas, the extent of previous comments really, i think it is going to have a great benefit. as it is constantly monitors glucose from minute to minute and changes that occur with exercise and diet, it can appropriately adjust the insulin infusions, and there were multiple artificial pancreas technologies that are becoming
2:26 pm
available. we are supporting some of the pivotal trials and some of those, but we are also, with stp support, supporting advances for even the next generation of artificial pancreas. and i think that that will make the people who sit in front of you, make their lives much simpler. but, we have to understand that there could be technology that is available, but if people don't use it, or are unable to use it, then that can create barriers. so, at least from the standpoint of usability, were putting a tremendous amount of investment into studies to understand how to make these more usable, ultimately for the patient. >> i want to tell you, i just came from a wonderful event called girls who code. and it is about the future of, not just girls who code, but innovation technology in the nexgen, taking on careers in stem. so, artificial pancreas research, studies, analytics, everything you do, how can we be sure to help you continue to
2:27 pm
invest? i have people pipe pipelines to do the kind of research that you need. how is the stem education for these kids here going to help them and all of us? >> it absolutely will help. i have to say that i personally spent a fair amount of time going to high schools and colleges, talking about the importance of stem education. and for example, just take the artificial pancreas. you would think that you, obviously you need bioengineered to try to devise, the microstrip circuitry's and other things. but it also take computer engineers. it takes people with strong math attic information and education. it also takes chemists and people with guild and -- skills in biochemistry to devise the next generation of smart influence and smart glucagon's and other drugs that would man those pumps. and people who are sort of thinking about, something that i mentioned, artificial intelligence and deep machine
2:28 pm
learning. because it is with these advances that people who participate in their usual care, we can learn from the groups almost instantaneously. this information can actually be fed back to improve the lives of people using the current technologies. so that we can take your passion, your imagination, your intelligence, and if we put you into these careers where we can use them, you can create a future of possibly no more diabetes. >> exactly. >> thank you. i appreciate it. senator collins: thank you very much, senator rosen. dr. kowalski, in your testimony, you discuss not only the impact on families, but also, the great cost-saving potential of the research that has resulted from those special diabetes program. that is why i think this
2:29 pm
investment is one that really pays dividends, both in improving the healthcare, and health of all of these young people. but also, the impact on the federal government. for example, the adoption of the artificial pancreas technology in adults could save medicare $1 billion over 25 years. you mentioned that another stp funded trial related to the slowing of the progression of early kidney disease in people with type i could save literally billions of dollars. i am in the medicare program. what additional research and development has similar cost savings potential? well, we, thank you senator collins. because this is such an
2:30 pm
important benefit of this funding, is the economic benefit, of course to the families, but to our economy, reducing the high blood sugar of diabetes reduces the risk of diabetes complications. and we fear these complications, such as eye and kidney disease, as you point out, we can reduce significant burden to medicare and end stage renal failure stated senator rosen's question about artificial pancreas systems, my brother and i has been on a hybrid closed loop for 3 years. thank you again for your leadership. it is really transforming lives here. my brother used to have severe hypoglycemia challenges. each hospital visit due to a severe hypoglycemic episode, on average, is about $20,000. so, these technologies, you have the long-term complications of diabetes, but the short term complications like severe hypoglycemia, or as adriana pointed out, diabetic ketoacidosis, also is very costly to the government, to
2:31 pm
employers, to insurance companies, so, this is tangible, real benefit on a personal level, but also on an economic level. senator collins that is a great : example. is is also why i am always puzzled if an insurance company denies coverage for a device that is going to help keep people healthy. that just doesn't make sense to me. not only from a compassion standpoint, or healthcare standpoint, but economically. it doesn't make sense. for the very statistics that you mention. ruby, i want to go back to you. in a recent article that was in the portland press herald, your mom said, we may diabetes related decisions probably every 15-30 minutes, all day, every day, and through the night. it is relentless. but, you don't let that get you down. you are very act of fourth grader. i am told you play a variety of
2:32 pm
sports. you enjoy art. you love playing with friends and exploring. and that is so encouraging to everyone. so, how have you been able to remain so active, while also making sure that you take care of your health? >> well, i make sure that i bring, like, stuff for when i go low i always pack an extra, like, pump. and, i just, sometimes, i just ignore diabetes. >> i think that is true of a lot of the children here. you just live a normal life, and you get some help from your teachers? school nurses, too, do not you? >> yes. >> that must help out also. adriana, i was struck that you
2:33 pm
mentioned in your testimony, that when you go home, you're taking your drivers test. first of all, i want to wish you the best of luck. i failed the first time. so, if at first you don't succeed, try again. how has diabetes technology allowed you and your parents to feel comfortable with this upcoming change in responsibility? >> definitely. so, i have the decks calm, so my dexcom, so my parents can watch my blood sugar wherever i'm, and i know that is going to help me feel more safe and help them make me feel, have them be, like, more ok with it. so, if i was low, they can just give me a call, and my, they can
2:34 pm
also hook up to anything bluetooth. so, as long as i, like, when i am in my car, my alerts will go to the car. so they are really loud. which will definitely help. that is great. i think that is a great example of the difference that technology can make. and as i said, for someone who has worked on this issue for decades, the advances in technology are so exciting. and, i have seen that with other main families that i have worked with. senator casey. >> thanks very much. i wanted to start by highlighting the legislation i mentioned earlier. those of you who don't know about the pennsylvania example i cited, this bill that i have introduced will be an expansion of medicaid, where the federal government would initially pay 90% of the federal match.
2:35 pm
some will say, well, we shouldn't do that. some will say we can do that. will have the usual arguments. but, we have expanded medicaid once. and a lot of people got healthcare. and we should do it again for children who have disabilities. and in this case, it would help children with type 1 diabetes. the way it works in pennsylvania, his children are benefited by a special pathway.
2:36 pm
in this case, these are children who meet the supplemental security income. ssi disability criteria. so, they meet the criteria in that program for disability. however, their household income, the household they live in, exceeds the ssi limits, it would make them eligible for medicaid. so, that would, we would change that. we would treat the child with a disability at the household. simple as that. right now, 70,000 children in pennsylvania benefit. i think that should be a national program. not just in pennsylvania or a few states. so, we will be continuing to work on that. we will talk more about it. in addition to, of course, pushing the number 1 priority for today, which is the reauthorization of the senate program. but i wanted to end my questions with adriana where i started. adriana, you have become a role model, and ruby has as well.
2:37 pm
and there are other role models in this room today. for so many people in your community. and, for young people especially. but i want to ask you, who is the most important role model for you after your diagnosis? >> right after i was diagnosed? it was probably my nana. because she was type ii. so, she was always just like there, and she knew exactly what was happening. how to calm me down, tell me everything was going to be ok. she was definitely probably my closest person after i was diagnosed. >> we are happy to hear that. i am sure you serve in that role for a lot of people today. so, thank you. i know in the interest of time, i will cut my question short. and move forward. >> thank you very much for all of the work that you have done, senator casey. i also want to salute senator jeanne shaheen for all of her work. she is coming back. she has a granddaughter with type i. and she and i has worked as a bipartisan team, because diabetes does not discriminate. it does not care if you are a republican or democrat or independent. or green or whatever. that's why this should continue to be a bipartisan cause, and it always has been.
2:38 pm
i have always had a democrat as my cochair of the diabetes caucus, since i founded it back in 1997. and, i'm pleased to have senator casey is a strong member of it as well. i want to thank each of our witnesses for being here today. it is thrilling to have victor garber here. to put, to tell us what it's like to grow older with type i diabetes, and his example is really encouraging to all of us. the work that is being done at nih and dr. rogers long standing commitment and working so closely with us on the special diabetes program has been wonderful. dr. kowalski. i think it's wonderful that jdr f now has a president and ceo
2:39 pm
who understands firsthand, the challenges of type i diabetes. you have had excellent leaders in the past as well. but we are delighted to work with you. and, of course, most of all i want to thank all of the delegates here today. but especially, ruby and adriana, who are so articulate, and you are right, senator casey. i can't imagine at their ages, being able to come before a senate committee and testify and help us better understand. i also want to do a shout out to some families in maine who have really educated me on this issue. i believe when i first met ruby and her mom, through the sweeney family. and i have watched their son, aidan, grow up from h 4, to now, -- age four to now, he is 17.
2:40 pm
he testified at age 4. before one of the children's congress. and they are great advocates. the seer family, who have a summer cottage very close to mine, have 3 members of their family with type i diabetes. and now, as i mentioned, my new niece, nicole reese and the younger also is a tremendous advocate for people with type i. of the i mentioned these -- so, i mentioned these families, and there are so many more, because i want all the delegates who are here from across the nation to know what a difference your advocacy makes. you are the reason that we could get more than 60 members of the senate to sign the letter on the special diabetes program. you are the reason that we were successful in getting an extension and committee for 5
2:41 pm
years. you are the reason that we have been able to invest billions of dollars in research, that has made such a difference in your lives, and will continue to make a difference in the lives of others. but, we could not do it without you. and, i am inspired by that sea of blue that is out there. so, when you go forth today, you visit your members of congress, tell them what it's like to have diabetes. but also, give them a little nudge to help us on the research, and on renewing the special diabetes program. because, believe me, it is really hard for them to say no to you. and, i am sure that you will all make a huge difference. you touch me every time that you are here.
2:42 pm
and, you help me redouble my own commitment to finding more effective treatments, a cause of diabetes so that we can prevent it, and the many causes, most likely. and ultimately, a cure. and, that day we will have the big party that ruby has mentioned. but again, be encouraged, because, the difference between 1997 and 2019 is absolutely enormous. we are making good progress. i want to thank all of you for being here today, and i want to also thank my staff, which worked extremely hard on this hearing.
2:43 pm
and also, the people at jdr f who were wonderful in cooperating with us and bringing all these children from all over america to washington. so, i know that this seo lou is -- sea of blue is going to take over the halls of congress today. and, that will bring us closer to the dream that we all share. and that is to end diabetes. committee members will have until friday, july 19, to submit additional questions for the record that may be, we will pass them your way. but again i thank you and i now yield to senator casey. >> thank you, chairman collins for both convening this hearing, , and for your great advocacy on this issue for so many years. we want to thank our witnesses, both doctors, mr. garber, we want to thank you in particular for bringing your personal story, and in particular the story about your mom, and to refer back to the two words you
2:44 pm
use, the fear and desperation that you saw that day. is something that we all need to be reminded of. and i think, because of the advancements, because of the work that you and others have done, a lot of moms may not have that same year and desperation. we are grateful for that. and inspiration. to ruby and adriana, you have got a bright future. as i said before, were going to put you in charge of some other projects while you're here. we got to get things moving. in the senate. so, we will give you that assignment later. i want to thank the delegates from trenton. in particular, i didn't do this earlier. this was my failing, because my
2:45 pm
colleagues were doing it when they introduced members from the states. i want to ask joey libyan and morays to put your hands up, if i can see them. ok. right. thank you. thanks for doing that. should've done that earlier. but, we know that for our witnesses, especially the younger witnesses, it is challenging to testify before congress. we are grateful that you did this and you are certainly equal to any of the witnesses we have invited to testify on any hearing. i also know that you will have a successful day ahead of you, as senator collins said. it is much more compelling and persuasive when you appear at the doorway of a member of congress, then when one of us is appearing as a colleague. and you will be able to make the case about the importance, the urgent importance of reauthorizing the special diabetes program. and also making sure that we make the case to get her through both chambers and to get it signed and a lot. so, we look forward to working with you on that. reauthorization. continuing the support that we
2:46 pm
will provide on investing in research, and investing the rising cost of insulin. and we thankful for your presence today. thank you. >> thank you. senator blumenthal has just arrived. we obviously are about to adjourn the hearing, and we are happily through the vote. if you could ask one question quickly, that would be great. >> you know, i will skip my questions. i will submit the for the record. i just want to thank you, madame chairwoman, and ranking member casey, for having this hearing. again, most important, thank everyone who is attending this absolutely packed room, which is very inspiring. believe me. very inspiring. i was here earlier, and i have had various other meetings, including armed services, but i just want to state my unequivocal support for this
2:47 pm
measure, and also, for efforts to reduce the cost of insulin. this astronomically rising cost of a life or death medicine is reprehensible. it is a disgrace for this country. that we cannot act more quickly and effectively. and, in the presence of so many young people, who are so inspiring to us, i think, you have given us the impetus to try to do more and do it better. so, i think you all for being here today, and i particularly want to thank members of the connecticut delegation. rowan and emma del takeo, and all of the advocates and activists who were here today.
2:48 pm
when people say to me, or ask me, what can we do to improve the state of our democracy? they should come and see this kind of showing this morning. thank you very much. >> thank you very much, senator, thank you. thank you. so i know the delegates are getting tired and the vote is on. the photographers have said, come down and get a couple of photos with the seo blue. -- sea of blue. so we are going to do that. but this hearing is now adjourned. thank you very much.
2:49 pm
[captions copyright national cable satellite corp. 2019] [captioning performed by the national captioning institute, which is responsible for its caption content and accuracy. visit]
2:50 pm
2:51 pm
announcer: this photo taken around noon from the new orleans times picayune, with coverage of hurricane barry. it made landfall this morning with sustained winds of 75 miles per hour as a category one. --tform workers have been
2:52 pm
oil services in the region have evacuated platform workers. one person tweeting -- thanks to all the folks at the office of emergency preparedness and all of our public safety personnel working today to keep us safe during hurricane barry, 2019. and the congressman sending this message. emergency information of where residents can call for help. announcer: democratic presidential candidates are campaigning throughout new hampshire this weekend. c-span has live coverage at 5 p.m. eastern from exeter, new hampshire, with senator cory booker. -- kamalar, harris harris speaks at gilbert. watch any time at and listen for the free speech -- with the free c-span radio app.
2:53 pm
, formery night on q&a new york city police deputy inspector talks about his book. >> i grew up on welfare in a andly of six, five girls myself. my father left when i was in the third grade. in asitting indian style class photo and holding my feet because i had holes in the bottom of my shoes so that my socks wouldn't get wet. i met friends and they were selling drugs. it was the thing to do. at 8:00r: sunday night p.m. eastern on c-span's q&a. , the oral argument in a case challenging the affordable care act, specifically the legality of individualda


info Stream Only

Uploaded by TV Archive on