▶ 0:16:10Chair Collins: What an obedient crowd we have today. This hearing will come to order. Good morning, everyone and welcome to our nation's capital. I am so pleased to convene this biannual hearing in conjunction with the breakthrough t-1 the 2025 children's congress. It is wonderful to host you and your families at the senate appropriations committee.
▶ 0:16:42Chair Collins: As the founding cochair of the senate diabetes caucus, I have long promoted diabetes research as one of my top priorities. Your advocacy for life changing research to prevent, treat and ultimately cure type one diabetes I
▶ 0:17:16Chair Collins: Looking out at this field of blue inspires me. But looking at your faces inspires me even more. Over the years, I have met so many wonderful children living with type one, individuals such as my summertime neighbor, ruby whitmore, who is going to be testifying today. Carolyn cardoza from brunswick, maine who is six and joins us as a delegate.
▶ 0:17:44Chair Collins: Aiden sweeney, whom I first met when he was only age four and now he is age 23. There are so many more, including our new cancer delegate, rachel white, who is also testifying today.
▶ 0:18:07Chair Collins: And there are adults living with type one as well, including nicole, a teacher who has lived with diabetes for more than 30 so many years and happens to be married to my nephew. I told nicole I would work her in.
▶ 0:18:28Chair Collins: [laughter] more than 170 delegates have traveled to washington from across the united states and five other countries to share with members of congress their personal stories of what it is like to live with type one diabetes. And I want to tell you how much your personal stories really matter.
▶ 0:18:58Chair Collins: They motivate and educate senators and house members to get involved and to support funding for the research that is necessary to deliver new treatments, more effective technologies and one day a cure. Let me tell you about my very first meeting with a family who had a son with type one diabetes . I was a brand-new senator.
▶ 0:19:28Chair Collins: It was back in 1997. They came to my portland, maine office and this little boy looked up at me and he said, "I wish I could just take one day off from having diabetes, my birthday or christmas, just one day." but of course, he could not.
▶ 0:19:55Chair Collins: And it one diabetes today is a disease -- and type one diabetes today is a disease that you can't outgrow. I am hopeful that is going to change. Just this morning, six-year-old carolyn cardoza from rose make -- from brunswick, maine told me she is a warrior of the cause of finding a cure for diabetes.
▶ 0:20:25Chair Collins: So these personal stories are why I started the bipartisan senate diabetes caucus in 1997. Since we started the caucus, and it has been bipartisan from the beginning, because diabetes doesn't care if you are a republican or democrat or independent or green or what. We have made some real progress. It has been exciting.
▶ 0:20:56Chair Collins: Federal funding for diabetes research has increased from 300 $19 million in 1997 to more than two point $3 billion. That is due to your advocacy. And that includes a $10 million increase enacted just last year. These investments are yielding results.
▶ 0:21:22Chair Collins: One program in particular has led to technologies that will allow better control of diabetes. That is the special diabetes program at the national institutes of health. And how lucky we are to have Dr. rogers for joining us again this year.
▶ 0:21:43Chair Collins: This critical program provides $160 million a year for type one diabetes research, supplementing the regular appropriations for diabetes.
▶ 0:21:59Chair Collins: In 2017, the special diabetes program led to the development of the first ever fda approved artificial pancreas that can control blood glucose levels automatically. And I am curious how many of you here today are using the continuous glucose monitor. All right. That is wonderful.
▶ 0:22:25Chair Collins: [applause] that shows the difference that the research can make. More recently, clinical trial data resulting from a clinical islet transportation consortium have contributed to the development of the first ever stem cell-based research and treatment for type one diabetes.
▶ 0:22:56Chair Collins: This was developed through research by a doctor at harvard university who has two children with type one and was determined to find a cure. So here is the exciting news which Dr. rogers will talk about further today.
▶ 0:23:19Chair Collins: Of the 12 individuals enrolled in the clinical trial, 10 of them no longer need insulin after one year. Imagine that. So today we can be evermore hopeful that one day we will live in a world where it type one diabetes can be cured.
▶ 0:23:41Chair Collins: Another important component of the program, which I know is of particular interest to the senator from alaska, supports prevention and treatment services for american indians and alaska natives who experience type 2 diabetes at nearly three times the national average.
▶ 0:24:06Chair Collins: The special diabetes program must be extended again this year. Otherwise, it expires in september. We work together to secure the funding increase for the svp in 20 years, but we've got to extend the program altogether.
▶ 0:24:28Chair Collins: I have introduced legislation with the cochair of the caucus, senator jeanne shaheen, to reauthorize this program through the end of 2027. So as you make your visits today, please ask members to cosponsor that bill so that the special diabetes program does not expire in september.
▶ 0:24:54Chair Collins: Let me close by saying how it is truly inspiring to look out and see all of the children who are here today, parents and loved ones who have come to D.C.
▶ 0:25:09Chair Collins: To share your personal stories and to continue advocating for increased research gas increased research g funding so we speed up the search for a cure. Your passion and hope for a cure gives us the confidence that it will happen.
▶ 0:25:33Chair Collins: Thank you so much for being here today and I will now turn to my friend and colleague, the vice chair of the senate appropriations committee, senator murray, for her opening statements. Thank you, senator. [applause]
▶ 0:25:52Sen. Murray: Thank you very much, madam chairman. Before I speak about this topic, I want to acknowledge the tragedy in texas and our thoughts are with the families who lost loved ones and we think of our first responders who rushed into danger. I know all of us here are ready to help texas recovery and I say that on behalf of all of us here on this committee.
▶ 0:26:24Sen. Murray: Thank you again for convening this really important, impressive hearing to talk about the nih special diabetes program critical work that supports life-changing research for millions of people who are living with type one diabetes and in particular to hear from all of the kids and young adults living with type one diabetes who came all the way here today to talk about why this program it matters.
▶ 0:26:51Sen. Murray: I know all of you traveled from all over the country. I want you to know that your voices make a huge difference in making sure congress takes action to treat and eventually cure type one diabetes. It is important that all of us understand your experiences with diabetes which is of course with this hearing is all about.
▶ 0:27:19Sen. Murray: Of course, it is important we improve our understanding of this disease itself which is what the nih special diabetes program is all about. This program has a great history of accomplishment, getting new artificial pancreatic devices to market, bringing new medication to delay it type one diagnosis and improving care for patients with serious convocations and more breakthroughs that we all know are around the corner.
▶ 0:27:49Sen. Murray: This work is life-changing, which is why I do want to really express my concern today about the fact that the trump administration is terminating or freezing more than 260 grants from the national institute of diabetes and digestive and kidney diseases. The care and research that people are counting on is really in jeopardy and your voices are important today.
▶ 0:28:14Sen. Murray: Four of those grants are in my home state of washington, including a clinical trial looking at blood pressure in 200 hemodialysis patients and a grant to train the next researchers. I know at colombia university, president trump terminated funding for research and how type one diabetes affects bone strength in kids. I don't think anyone here needs us to explain why that is so important.
▶ 0:28:40Sen. Murray: We need to strengthen bones and protect bone so everyone can compete in sports and live life to its fullest. So I want to be clear, trump does not get to decide funding for diabetes, congress does. I was on both sides of the aisle are committed to make sure we maintain strong investments in this work, but we need more than just talk right now. We need to stand up and reject what is happening right now to biomedical research at nih and I know my colleagues understand that as well.
▶ 0:29:13Sen. Murray: So I want to thank all of you for being here today. When it comes to defending this research, when it comes to pushing back against these kinds of cuts in funding freezes we are seeing come of the most effective tool we have is our voices, like the advocates in the room.
▶ 0:29:28Sen. Murray: The strongest way all you can push back is by speaking out like you are doing today, sharing your stories which are so important, and make sure everyone knows what is at stake, and I know that with the incredible advocates like all of you, we are going to keep making progress and keep investing in a life-changing research and eventually cure type one diabetes. Thank you.
▶ 0:29:55Chair Collins: Thank you. [applause]
▶ 0:30:00Chair Collins: Has been my longtime cochair of the senate diabetes caucus. We worked together as -- we work together as a team with many of the colleagues you see here today. She is delayed because of a session in the senate armed services committee.
▶ 0:30:26Chair Collins: She will be joining us later but she says that I quickly read a brief opening statement before we turn to our witnesses. This is from senator shaheen. "I want to extend a warm welcome to all of the witnesses and the more than 170 advocates who have traveled to congress today to participate in today's -- this year's children's congress.
▶ 0:30:54Chair Collins: Your tireless advocacy for yourself, your families, your friends, and to everyone living with type one diabetes, including my own granddaughter, is truly inspiring. While I regret that I cannot be with you in person, I do want to take a moment to recognize rachel white from north hampton, new hampshire, who you will be
▶ 0:31:28Chair Collins: Hearing from shortly. Rachel's story is one that has deeply moved me. As a teenager, she balances a demanding academic schedule, collegiate level athletics, and dedicated to advocacy work come all the while managing the daily challenges of type one.
▶ 0:31:48Chair Collins: She will share what that means in her own words, but let me say from my family's experience, it requires extraordinary discipline, strength, and resilience. To my colleagues, I urge you to listen closely to these advocates. Their stories are powerful reminders of the urgency of our work.
▶ 0:32:11Chair Collins: We must do more to support people living with diabetes, starting with increased federal investment in research through the nih and the special diabetes program. Thanks to these programs, we stand on the brink of a cure. This is the moment to deepen our commitment to these advocates, not to abandon it.
▶ 0:32:34Chair Collins: We must also finally pass comprehensive legislation to make insulin affordable for every american, namely our bipartisan insulins I have co-authored in the previous senate. Thank you for sharing your stories and being here today. I wish you all a meaningful and memorable children's congress." thank you, senator shaheen.
▶ 0:33:03Chair Collins: [applause] we will now turn to our witnesses. Our first witness, I am proud to welcome from the great state of maine, is ruby whitmore. Ruby is 16 years old and was diagnosed with type one diabetes at age five. I have known it will be entire life.
▶ 0:33:33Chair Collins: She is a rising junior and plans to major in biochemistry in college with the goal of working in the emergency medical field up, surgery. Ruby, thank you so much for making the journey down from maine to be with us today. Our next witness, as I mentioned, is going to be rachel white from north hampton, new hampshire. Rachel is also 16 years old and was diagnosed with type one at age 11.
▶ 0:34:06Chair Collins: She is a nationally ranked tennis player who aspires to play tennis at the collegiate level. Rachel, thank you for being here today to share your story. After rachel's testimony, we will hear from katie bone. Katie was diagnosed with type one at age 11.
▶ 0:34:29Chair Collins: Today, she is a professional rock climber and her passion for climbing led her to local ninja warrior competitions. She made her debut on american ninja warrior tv show, becoming the youngest championship -- champion in the ninja warrior women's championship history. She is working hard to qualify for the olympics.
▶ 0:35:01Chair Collins: Thank you for being here today. Finally, we are delighted to welcome Dr. griffin rod. Ghe is the director of the national institutee of diabetes andrs -- rode
▶ 0:35:35Chair Collins: Andrs -- rodgers, he is the director of the national institute of diabetes and digestive and kidney diseases. Here is that she is here to talk about the national diabetes program. I want to thank you most sincerely for coming back. Every single one of the children congress is I have chaired since you have been head of the institute, you have been here to update us on the developments. I thank you for your dedication to this cause.
▶ 0:36:08Chair Collins: Thank you all for joining us. With that, we are going to start with ruby's testimony. Thank you, ruby.
▶ 0:36:16Ms. Whitmore: Good morning chairwoman collins, senator shaheen, ranking member murray and members of the committee. My name is ruby whitmore, and I am a 16 year old student from old town maine and I'm honored to speak with you not just as someone living with type one diabetes, but as a student, athlete, volunteer and some someone who dreams of becoming a surgeon.
▶ 0:36:40Ms. Whitmore: Diabetes runs in my family, so it wasn't a total surprise when one summer my parents noticed the signs and took me straight to the doctor. I was just five years old. Now more than 10 years later, I can say I have learned how to manage the disease, but it has also changed my life in ways most people never see. Managing type one diabetes isn't something I ever get a break from, even when everything is going well, it is always there, like an extra layer I have to think about that others don't.
▶ 0:37:13Ms. Whitmore: Playing sports makes it even more complicated. I have had to learn through experience how to balance my blood sugar before a game or during a race and there have been times when I've had to sit out and treat a low in the middle of practice or a game. It is frustrating sometimes because I don't want to worry about numbers, carbs over the my center is still reading correctly, but being open about those challenges has to help me take control of them. It has made me stronger and more confident in who I am.
▶ 0:37:43Ms. Whitmore: Despite the challenges, I have never let diabetes define what I can or can't do. I play soccer in both school and travel teams. I run track, I serve as my school's best buddies chapter president. I even had the opportunity to volunteer at northern light eastern maine medical center working with patients in both general care and neurosurgery.
▶ 0:38:05Ms. Whitmore: My goal is to become a doctor, a trauma surgeon, because I want to help people await my care team, especially my endocrinologist, cory webb, helped me. He has made a lasting impact on my life and I hope one day I can do the same for someone else.
▶ 0:38:22Ms. Whitmore: I volunteer in part because she won the has given me perspective and empathy for those in need who also face extraordinary challenges, often without the support and resources that my family and friends have provided. I want to take a moment to talk about my family. My dad also has type one diabetes so I have grown up knowing what it looks like. This has put a great deal of stress on my mom who is always there for us.
▶ 0:38:50Ms. Whitmore: She is the one not so quietly making sure I'm ok, reminding me to bring sugar tablets, staying up when I slid through my pump alarms and just being there every day. Even though I think of myself as independent, I know I wouldn't be the person I am without her support. She is the reason I felt safe enough to be confident in living with this disease. The burden placed on families dealing with type one is often invisible and often overlooked.
▶ 0:39:19Ms. Whitmore: I have been lucky to have access to the latest diabetes technology, like continuous glucose monitors and advanced insulin pumps, which have made it possible for me to live a full, active life. Advancements like these have been made possible by the special diabetes program. I want to thank you for the recent extension because it supports groundbreaking research and brings us closer to better treatments and one day a cure.
▶ 0:39:47Ms. Whitmore: I never want a young girl to think she can't play sports because of her insulin pump. I never want a family to skip doses or ration supplies because of costs. Everyone living with type one diabetes deserves a chance to thrive. Your support makes that possible . Thank you for your time and thank you for investing in a healthier, better future for people like me. [applause]
▶ 0:40:20Chair Collins: Great job, ruby. Thank you. Rachel, would you please deliver your testimony.
▶ 0:40:29Ms. White: Good morning chairwoman collins, senator shaheen, ranking member murray, and members of the committee. Thank you so much for giving me the opportunity to be here today . My name is rachel white, and I am a high school student, nationally ranked junior tennis player and I lived with type one diabetes. My diagnosis came just before I turned 12. My mom noticed something wasn't right.
▶ 0:40:55Ms. White: I was eating and drinking water it nonstop, but I was losing weight. I had just grown an inch but also lost five pounds. I started waking up in the middle of the night to use the bathroom, which had never happened before. At the doctor's office, no one was immediately alarmed but my mom insisted on blood work and that is when everything changed. My blood sugar was over 600. My a1c was over 14.
▶ 0:41:23Ms. White: I had type one diabetes and my life as I knew it was suddenly and completely different. At 11 years old, had to eat learn to manage a disease that has no character takes a day off . That was the scary part. A typical day for me now starts at 6:30 a.m. I eat the same breakfast almost every day because it helps keep my blood pressure -- sugar stable.
▶ 0:41:49Ms. White: I do the same for lunch and snacks, even though it gets boring, because steady blood sugars help me get through my intense school and tennis schedule. I train for tennis anywhere from one-three hours a day, a true passion of mine. Michael is to eventually play tennis at an elite -- my goal is to eventually play tennis at an elite college. I carry juice with me at all times because I tended to have low blood sugars at times.
▶ 0:42:22Ms. White: I checked my blood sugars, not to get an advantage over my opponent but to make sure I'm safe. Having low blood sugar can make me feel dizzy, unfocused and a risk of passing out. While most players think about winning the next point, I have to think, and my crashing, do I need juice, did I take too much insulin. Adding this extra challenge to an already immensely demanding sport is difficult, at times very frustrating. However, I choose to move forward.
▶ 0:42:49Ms. White: Every single day I am making complex, high-stakes decisions while trying to live the life of a normal teen. That is why I am here today to ask you to please keep supporting the work that makes life with t wendy more livable and one date curable. Thank you for extending the special diabetes program to september. The research is the reason we have better devices, smart insulin pumps and more hope than ever.
▶ 0:43:18Ms. White: I hope you will extend the program for years to come so it can continue to deliver treatments and cures that will improve the lives of millions of americans like my own. My family and I truly believe that with your support and improvements in technology, a cure for this disease in the near future is very much a possibility. I am grateful for the tools I have now.
▶ 0:43:41Ms. White: I recognize I am very fortunate that my family has been able to support me in this journey, but I dream of the future where I don't have to carry juice in my tennis bag, explained to a chair on fire that I have t wendy -- t-1 d. Thank you senators for taking the time to listen to my story and for supporting all of us living with type one diabetes.
▶ 0:44:09Ms. White: Speaking in front of you has been an honor and something I will remember for the rest of my life.
▶ 0:44:13Chair Collins: Thank you very much. [applause]
▶ 0:44:33Ms. Bone: Ou for the opportunity to share my story. When I was diagnosed with t1d at 811, my very first question to the doctor was whiny. It was can I still climb I decided that t1d wasn't going to keep me from achieving my goals. It has shaped everything I have done since then, from earning a spot on the use and in the planning teams to becoming the youngest champion in american ninja warrior.
▶ 0:45:04Ms. Bone: I learned how to compete at the highest level while managing my diabetes around-the-clock. T1d is relentless and carries an enormous toll on my body and mental health. It isn't something I can pause or ignore. It is often the simplest things that aren't visible to the outside world that are the most difficult. Sleep is a constant struggle.
▶ 0:45:29Ms. Bone: I would look to alarms and unexpected highs and lows and when you are not sleeping well, that means you aren't recovering well and that affects me. I have can -- competed in china, europe and all over the world and every time I go I have to figure out to end my blood sugars with unfamiliar food, different time zones and new schedules. I've had to carry my own food across continents. As a female athlete, hormone cycles throw in another unpredictable layer.
▶ 0:45:56Ms. Bone: There are weeks when everything I figured out no longer works and I have to readjust all over again. People see me win a national title or run up the wall on tv but do not see the hundred plus decisions I make every day. They don't see me stopping in the middle of training to treat a low for the days I feel wiped out from the blood sugars. They don't see the toll it takes because a lot of us with t1d carry it well.
▶ 0:46:23Ms. Bone: These challenges are real but I am inspired the progress has been made and hope for a cure to come. Today I wear a continuous glucose monitor on my arm and it gives me a blood sugar reading every five minutes and lets me see trends in real time on my phone. That technology needs I don't have to stop climbing or competing just to put my finger. I also use an insulin pump to stay in range during training, competitions and even during overnight filming for american ninja warrior.
▶ 0:46:52Ms. Bone: The development of this technology did not happen by accident. It is a direct result of policymakers like you who have funded a special diabetes program. In fact, new study finds that it has led to $50 billion in federal health care savings. That is more than a 10 fold return on your investment. That is why I'm to strongly urge congress to renew it.
▶ 0:47:16Ms. Bone: The program funds t1d the science that makes more manageable -- that makes t1d more manageable. It means the development of therapies that can replace others, disease modifying therapy at venting, slowing, halting or reversing t1d regression.
▶ 0:47:42Ms. Bone: At children's congress, I've had the opportunity to meet so many young people like rachel and ruby, who are also leading amazing lives because of research breakthroughs. Alum adjuvant where our lives will be at me get cures. I know we will be there thanks to you. Thank you again for hearing my story and being our champions. Thank you. [applause]
▶ 0:48:08Chair Collins: Thank you so much, katie, for your testimony. Dr. r, thank you for being hereodgers.
▶ 0:48:21Ms. Bone: Chair collins, thank you for the invitation Dr.
▶ 0:48:27Rodgers: Dr. rodgers: -- thank you for having me here to talk about diabetes support and research. We have dramatically improved the health and quality of life of people with type one diabetes. This progress would not be possible without the support of my fellow witnesses as well as the people here today, those who represent across the country.
▶ 0:48:57Rodgers: All of you are true champions in advancing diabetes research. Thank. The long-standing federal investment in diabetes research has enabled us to take on challenges, drive innovation and address research gaps beyond what we could do with support of the regular appropriations.
▶ 0:49:23Rodgers: We have been able to enroll more patients and longer trials to maximize research investments. This approach has yielded incredible progress. For example, the support and research has culminated in the first ever fda approved preventive therapy for type one diabetes, the first ever fda approved cellular therapy for type one diabetes and multiple new fda authorized artificial pancreas devices that will become the standard of care for
▶ 0:49:53Rodgers: Many living with type one diabetes. Including the children in the room today. These therapies were just faraway goals when I testified about research in 2007. Today, they are realities that directly benefit people with or at risk for type one diabetes.
▶ 0:50:16Rodgers: These advances were made possible thanks to your long-term investment in research , a close partnership with organizations like breakthrough t1d, and the dedication of our clinical study volunteers and families. While we celebrate this progress, we are also vigorously building on a major current research goal and high priority for people affected by the disease to find a biological cure for type one diabetes.
▶ 0:50:44Rodgers: This involves understanding how insulin producing data cells are lost and how they can be replaced and protected including through transportation -- transplantation. We must work to protect transplanted cells from the immune attacks on the body. The ongoing search complements industry clinical trials, testing cell reports placement strategies.
▶ 0:51:12Rodgers: Some use techniques that have groups including cell products and encapsulation technologies that protect transplanted cells from rejection. We are confident these complementary efforts will one day culminate in approaches to replace lost beta cells, cure type one diabetes and illuminate the burden that comes with the disease management.
▶ 0:51:39Rodgers: I'm also pleased to report that supported research provides benefit beyond type one diabetes. For example, the artificial pancreas, a device developed with support for the management of type one diabetes, was recently approved for adults with type two diabetes.
▶ 0:51:57Rodgers: Recent extension has enabled the launch or expansion of ambitious studies related to diabetes complications, such as heart disease and diabetic foot ulcers. Understanding these is not only important for people with type one diabetes but benefit those with type 2 diabetes, conversely , we are using knowledge from treating type 2 diabetes and applying it to type one diabetes.
▶ 0:52:26Rodgers: For example, an inhibitor medication is approved to manage blood glucose levels in type two diabetes and heart and kidney protective effects. Determining if the medications are safe and effective for people with type one diabetes to provide much-needed tools for preventing multiple complications.
▶ 0:52:52Rodgers: While we celebrate these and other incredible successes made possible, we will continue to pursue cutting edge research, such as applying artificial intelligence and machine learning technologies to type one diabetes research in new and exciting ways. With continued research, we know we can achieve our ultimate goal , preventing and curing type one diabetes.
▶ 0:53:19Rodgers: Thank you and I am happy to insert questions when the time is appropriate.
▶ 0:53:23Chair Collins: Thank you, doctor. [applause] ruby, I want to direct my first question to you. I was truly moved by your tribute to your mother and I know what an important role she has played in helping to keep you healthy.
▶ 0:53:48Chair Collins: Your family, unlike some others, has had a lot of experience with type one diabetes, including your dad. But a lot of your friends, coaches, teachers have had no experience with it. Couldn't you talk to us about how you educate your coaches, teachers, friends about your special needs?
▶ 0:54:17Ms. Whitmore: That is a really good question. The first thing I think of is my soccer coach for school is a type one diabetic. So he always has stuff. My other coaches, they are all very understanding and I just tell them, I am diabetic and I need sometimes to take a break and they just tell me, that is fine. Just tell us.
▶ 0:54:47Ms. Whitmore: And I have a couple of my other coaches keep stuff in their bags now, just because I have told them. I think really you just have to tell people about it because they are not going to know if you don't tell them. That is not something anyone ever thinks about. You don't see someone sitting on the sideline and think, they are diabetic, that must be why they are out. You just need to inform people. My friends are really good about it too, just telling people.
▶ 0:55:20Chair Collins: Dr. rodgers, I was thinking about ruby's family and others where there may have more than one person with type one diabetes. You mentioned one of the breakthroughs we have had is some medication that can delay the onset for someone who is at risk. Could you explain that a bit more to us?
▶ 0:55:49Dr. Rodgers: With the support that we have received from sdp, we have developed a reclassification, if you would, of type one diabetes, realizing that it exists in people who are at genetic high risk, some triggering event leads the immune system to attack the beta cells with production of antibodies but still at a level with normal blood sugars.
▶ 0:56:19Dr. Rodgers: But then that is ultimately followed by a period of the blood sugar being abnormal and then ultimately to clinical type one diabetes. With the funds have been able to allows to do is actually to look for therapies that can prevent the onset of clinical type one diabetes by treating them in earlier stages.
▶ 0:56:44Dr. Rodgers: Initially when the blood sugar is not completely abnormal but still high, and then at an earlier stage one only there is a presence of the antibodies. A number of years ago following the work that was done on the consortium we developed a drug developed with the intended purpose.
▶ 0:57:08Dr. Rodgers: It has shown for the first time that one can delay the onset of type one diabetes for at least three years in individuals who receive this therapy. Three years may not seem like a lot but imagine not having to inject insulin and manage the disease and other issues.
▶ 0:57:30Dr. Rodgers: We have in a pipeline in the trial, a number of medicines we hope might have the same effect, either alone or in combination. But the first fda approved therapy for that treatment.
▶ 0:57:45Chair Collins: We have a lot of members here today so rather than going onto the next question, I am going to yield to senator murray.
▶ 0:57:53Sen. Murray: Thank you very much. Very impressive to hear all of your stories. We just follow up quickly on that because I heard rachel say that most people that are diagnosed are fitting severe symptoms for you are talking about early diagnosis. How are we educating doctors and families at the information that they need to be tested and how are we making sure people can't afford that?
▶ 0:58:22Dr. Rodgers: In terms of the education of individuals with type one diabetes for those at risk, a number of groups, including the nih and others and breakthrough t1d has been a yeoman's job of public education felt by societies, the american diabetes association, endocrine society and others, understand
▶ 0:58:53Dr. Rodgers: The work we are doing and make sure their physicians who are specialists in the area are well aware of it, both once it gets fda approval or to enter patients into clinical trials that other advances become available.
▶ 0:59:17Dr. Rodgers: When patients typically present, they may present with something like diabetic ketoacidosis, which is a troubling condition. If you know you are at high risk and you enter a trial, you are able to get an early indication that this may be the path to entering some in this trial could prevent them from developing diabetes.
▶ 0:59:42Supple Murray: It is important to give than that information. I appreciate that. All of you are really impressive and I am impressed that you are athletes. I have a niece who is type one diabetic and she was told by a coach in high school that she couldn't play because she is diabetic. I am certain other young people have heard the same thing.
▶ 1:00:08Supple Murray: What is your advice to young people today to get past anybody who says you can't participate because of that? You seem to have accomplished that so well.
▶ 1:00:20It Is -- Ms. White: It is harder and there are many things you have to think about being an athlete. I tend to go low because I always running around on the court and it is very physical and only you.
▶ 1:00:33It Is -- Ms. White: I would give advice to younger people that you want, and not to let diabetes stop you from going to play soccer or tennis or anything you want, because diabetes definitely makes things more challenging, but there is nothing you can't do.
▶ 1:00:52Sen. Murray: And you talked about invisible challenges. What are those individual challenges so we all know?
▶ 1:01:01Ms. White: The invisible the invisible challenges, your free time is taken up by wondering if you have to change your site and just thinking about everything all of the time, especially now with a lot of you are probably driving now.
▶ 1:01:33Ms. White: Just thinking about your blood sugar before you get on the road and thinking about how much time you are going to have before your practice or school if you are low and can't drive. So I think that is a real big thing.
▶ 1:01:49Sen. Murray: Things that others don't see. Katie, the youngest american ninja warrior. You can all be ninja warriors. We are looking at one right now. It is great to hear your story and see the challenges you have overcome as well. How would you describe the advances in science and medicine that made the most difference for you to be able to accomplish that?
▶ 1:02:12Ms. Bone: Eyewear in insulin pump and cgm. A continuous glucose monitor. It has been -- I wear an insulin pump and gcm, eight continuous glucose monitor. In climbing conditions, we have to be in isolation and we can't see the clients and we can't have the phone.
▶ 1:02:40Ms. Bone: I have to lock my phone and get somebody if I want to look at it but it has made it easier if I don't have to take the 10 minutes to put my finger and check my blood sugar and can focus on warming up and competing. As it is, that takes a lot of mental energy and so does diabetes. And it has made it so I can go out there knowing my glucose and having ease of mind of that as well.
▶ 1:03:06Sen. Murray: Thank you to all of you as well to be here today to talk about and make the public more aware of all of the things you can a commish and all of the work we still have to do to continue the research.
▶ 1:03:19Chair Collins: Senator smith.
▶ 1:03:23Sen. Smith: Thank you madam chairman and ranking member murray. Ruby, rachel, katie, you have been so impressive today and have made an impact on me. All of you sitting here, the challenges you live with, you are really incredible human beings, and I know you will continue to be incredible human beings.
▶ 1:03:49Sen. Smith: I wanted to recognize my delegates. Where are they? We have a meeting later with them. Maybe I am not seeing them, but we do have a meeting later with them. I am so -- I sell, so appreciate your attitude and encourage. And moms and dads, hats are off.
▶ 1:04:22Sen. Smith: You are superstars no doubt in what you do every day. I wanted to address this to rachel and ruby. As we move closer to finding a cure to type one diabetes, which is the gold. April 15, president trump signed an executive order addressing insulin and making it more affordable. So significant on all the research he is supporting there.
▶ 1:04:53Sen. Smith: What do you each look forward to the most when that day finally arrives and we are looking at the tv screens and it says, we have a cure for type one diabetes. What do you look forward to the most?
▶ 1:05:09Ms. White: For me, tennis is a huge part of my life. That would be the best part for me because it is always hard having to check your blood sugar and making sure you have enough juice in your tennis bag or if you are excited before a match or nervous or anything. Just being able to not have that anymore would be such a relief.
▶ 1:05:35Ms. White: Not just for me but for people who can't afford insulin and some people who pass away from not being able to afford insulin. That is very sad and I think that was there is a cure, it will save so many lives and make the lives of millions of people way more easy.
▶ 1:05:53Sen. Smith: And ruby, when you see that new/, what do you think would be your celebratory moment.
▶ 1:05:59Ms. Whitmore: That is a good question. I think it would be just not having to worry about it anymore and just being free of it. I feel like just taking off a burden that has been in my life and so many other people's lives.
▶ 1:06:21Ms. Whitmore: I recognize I am very lucky to be here but also be here as a healthy diabetic who can afford insulin and who can -- who has supplies and resources and has a support system. But as rachel said, many people don't. I just hope they would be able to get the care as well.
▶ 1:06:51Sen. Smith: Great answers. Dr. rodgers, how can we change the early detection to make sure those eligible for the drug can receive treatment to delay its onset? How are we addressing that and identifying those?
▶ 1:07:06Dr. Rodgers: Thank you, senator. We are involved in a number of studies. Of course, people who have a first-degree relative with type one diabetes, of course, are themselves at risk.
▶ 1:07:27Dr. Rodgers: There is a large number of individual, for example, who do not have any family members who develop the symptoms that you heard. Unfortunately, they end up in the emergency room with diabetic ketoacidosis and that is the first sign.
▶ 1:07:46Dr. Rodgers: Just continuing to educate professional staff, people in the allied health fields about these critical complications or signs and symptoms early on.
▶ 1:08:04Dr. Rodgers: We have developed with stp support a fairly large network which we are able to screen not only individuals at high risk but other patients who may have related autoimmune conditions who may also come in contact and having them in these studies sometimes gives us very early indication that they are at risk .
▶ 1:08:30Dr. Rodgers: We really do have to continue our efforts and the breakthroughs in t1d made it a vital challenge. They have been letting people be quite aware because there are things to do in terms of prevention today.
▶ 1:08:49Sen. Smith: What a great breakthrough. I want to thank you for all you have done. My time is out but I want to be your cheerleader, your supporter and everybody in this room that is dealing with this, you've got members of congress that are in it with you. We don't know the anxiety that comes with this everyday like you do, but we know what our job is and our job is to find a cure, and we are not going to forget that. Thank you. [applause]
▶ 1:09:24Chair Collins: I am delighted to welcome the co-chair for many, many years of the diabetes caucus in the senate, senator shaheen.
▶ 1:09:39Sen. Shaheen: Thank you, chair collins. I appreciate your letting me sneak in since I am in the middle of a defense bill markup, but I really wanted to be here to thank all of you who are members of the children's congress for being here today and for your advocacy every day and for your willingness to speak up about the need to find a cure. And none of us forget that.
▶ 1:10:14Sen. Shaheen: I have very much appreciated all of the work the diabetes caucus has done over the years and the leadership from senator collins to provide additional funding and to improve treatments, and clearly we have to work to do. Thank you to Dr. rodgers and all of the panelists for being here and for your testimony this morning.
▶ 1:10:34Sen. Shaheen: I would like to begin with rachel since she is from new hampshire and ask, what advice you would give to someone who has just been diagnosed with type one.
▶ 1:10:45Ms. White: I still remember the day I was diagnosed. I was 11 and I got taken out of school and luckily I wasn't hospitalized, which is surprising because my blood sugar was very high.
▶ 1:11:01Ms. White: I would just tell people that I know it is very scary when you are first getting this information and there are so many different factors, picking your finger and giving yourself insulin and it can be very scary but it definitely gets better the longer you go.
▶ 1:11:17Ms. White: I remember the first week, I can barely remember because I ate so much food but I've definitely been a diabetic for four years and I would say I am definitely more educated and I am here today so it is proof you can do anything even with this disease.
▶ 1:11:38Sen. Shaheen: Would either of the other witnesses like to come in, ruby?
▶ 1:11:42Ms. Whitmore: I think rachel covered it. That is pretty much what I was going to say.
▶ 1:11:49Sen. Shaheen: Anything to add?
▶ 1:11:51Ms. Bone: It is terrifying at first. It is incredibly scary and even for me, it is still hard but I had to figure out how to make it work because I wanted so much with my wife and I still do and I wouldn't necessarily change what happens to me because it has given me so many incredible opportunities, one of them being here.
▶ 1:12:21Ms. Bone: A newly diagnosed person has so many incredible opportunities and a bright future if they want that. So it is just not giving up and figuring out how to do it because it is hard but you are still here and you can make an incredible life out of it.
▶ 1:12:36Sen. Shaheen: Thank you to each of you. Dr. rodgers, I am concerned that this administration has terminated grants in 29 states that total more than $120 million.
▶ 1:12:52Sen. Shaheen: In addition to the cuts, the proposed nih budget would/funding -- would slash funding by putting it with other institutes. Can you tell how important it is to continue research and trials and prevention initiatives and why that should be prioritized and protected from reductions?
▶ 1:13:15Dr. Rodgers: Senator, some of the major accomplishments we have discussed today, a good example of why your continued support for ongoing research into diabetes and in particular type one diabetes is so important.
▶ 1:13:39Dr. Rodgers: We are on the cusp of major breakthroughs, especially related to therapies and finding a biological cure. We have studies that I have told this committee about before, and environmental determinants of diabetes in youth, what is it that triggers the autoimmune disease.
▶ 1:14:04Dr. Rodgers: We required studying 425,000 at risk kids to enroll 6000 from the age of birth to 15 years. I am happy to report the very last patient turns 15 this year. We are already on the cusp of understanding that is the kind of work we have to roll up our sleeves and continue. That is where the cures will manifest themselves.
▶ 1:14:33Dr. Rodgers: I could not give a better explanation of why the support has been so important and ongoing support will be especially important.
▶ 1:14:45Sen. Shaheen: Thank you for the great work niddk continues to do. Thank you to the delegates from the children's congress for being here.
▶ 1:14:55Chair Collins: Thank you, senator shaheen. [applause] senator murkowski.
▶ 1:15:09Sen. Murkowski: Thank you for your leadership on this important issue and to the delegates that are here in the children's caucus, thank you. Thank you for not only being here but your advocacy on behalf of so many. And to the witnesses that have shared your stories with us here in this senate know how important it is to have voices.
▶ 1:15:36Sen. Murkowski: Your fears and your determination shared here. It encourages us. It motivates us to do more for you and with you. Thank you. Thank you for that. Dr. rodgers, you just mentioned the environmental contributors to type one diabetes.
▶ 1:16:07Sen. Murkowski: We know american indians, alaska natives are more likely to be diagnosed with diabetes. 1.5 times more. Senator collins mentioned the special diabetes programs for indians. It is quite remarkable the gains we have seen with that focus. It is so hard.
▶ 1:16:33Sen. Murkowski: When you come from an area where in your tribal communities the prevalence of diabetes may exceed 50% -- that is really alarming. These disparities have existed and persisted for generations. What we have been able to see with this special diabetes program is helping to reverse these trends.
▶ 1:17:01Sen. Murkowski: It is not only helped reduce complications but led to a remarkable 54% reduction in new diabetes diagnoses among american indian and alaska native youth, which is a straight hearing. It also contributed to -- is extraordinary. It also contributed to end-stage renal disease. You mentioned the study and the fact it's almost completed after 15 years.
▶ 1:17:31Sen. Murkowski: Are there other strategies or other efforts that are underway to include dave or city of races and ethnicities -- diversity of races and ethnicities where there is a greater prevalence of diabetes?
▶ 1:17:50Dr. Rodgers: Thanks for that question. You are right. The special diabetes program aimed at american indians, sdpi, has been a program that is run in conjunction and parallel with this sdpp program. The limitation of the provisional care for individuals with diabetes.
▶ 1:18:16Dr. Rodgers: What we have learned in large part due to the sbp, in conjunction with the centers for disease control, there's the search program. We are looking for diabetes in youth and adolescence, including type one diabetes. Something remarkable you mentioned the high prevalence of diabetes among american indian alaska natives.
▶ 1:18:45Dr. Rodgers: There's been an increasing incidence of type 2 diabetes in youth and adolescence that's been uncovered by that stp supported search study. -- sdp supported super city. Type is more aggressive than type one diabetes. The therapies we have for adults with type 2 don't work particularly well in youth and adolescence. Type 2 diabetes.
▶ 1:19:17Dr. Rodgers: The aggressiveness of the disease in terms of the time of diagnosis to the time of complication is much more accelerated. What we are learning now from the program we can apply to type 2 diabetes in youth as well.
▶ 1:19:41Dr. Rodgers: I do want to dominate all your time but we are very pleased with the success and implementation of these artificial pancreas technologies. There are certain areas and industries that are reluctant to do trials to determine the success of that. That is where we come in with sdp support. Women who are pregnant.
▶ 1:20:07Dr. Rodgers: There have not been that many studies to determine the efficacy of artificial pancreas technology. Individuals who come from low income or low educational attainment. This is somewhere we are stepping in. It turns out in the preliminary study, with minor modifications for this technology allows it to be utilized for a greater percentage of the population, including individuals and alaska natives and american indians.
▶ 1:20:37Dr. Rodgers: That is one example or two examples of where we are moving in this area.
▶ 1:20:41Sen. Murkowski: Promising. There are too many that accounting on all of us to find the cure. Thank you very much. They key to our witnesses will
▶ 1:20:51Step Chair Collins: Thank you, senator murkowski. Senator durbin, you have been very patient. Thank you.
▶ 1:20:58Sen. Durbin: As the designated mail senator -- male senator -- [laughter] it's an honor to be here and participate. I would like to mention a few things. 10 years ago, I went to nh and I met with Dr. francis collins, soon to be an american hero for all his leadership of that agency. What can I do to help?
▶ 1:21:27Sen. Durbin: He said, make sure every year we have a study increase -- steady increase in research funds for so many different diseases. If you can give me 5% real growth every single year, we will light up the scoreboard with all sort of things to make life better for young people who were here and other people. I came back here to the senate and the appropriations committee which I have served on for a few years. I am listed the help of a number of people.
▶ 1:21:54Sen. Durbin: My friend patty murray who was here earlier, as well as roy blunt who was a republican senator from missouri who chaired the committee. Senator collins was part of it. Lamar alexander, republican of tennessee. We managed to over the span of 10 years increased nih funding from $30 billion to $48 billion through steady increases over 10 years. Good things started being reported.
▶ 1:22:25Sen. Durbin: That is the good news. Now the bad news. President trump's budget for the next year eliminates all the increase we put in and goes back to $30 billion, where we were 10 years ago. We are walking away from research opportunities that can lead to cures and lead to improving lives across the united states and around the world. Here's the good news. You are looking at the first line of defense to make sure that doesn't happen.
▶ 1:22:53Sen. Durbin: The people who are gathered here, the senators have the ultimate decision as to how much money is going into medical research for diabetes and other purposes. We need you to help us by encouraging our colleagues to join the struggle and put in a real investment to make a difference. The second point is one that is somewhat personal.
▶ 1:23:20Sen. Durbin: The justices on the supreme court, sonia sotomayor, type one diabetes since age seven. She's a fan of baseball. A yankees fan. She said I would like to go to wrigley field and watch the cubs play the yankees. I took her to the game several years ago. She was testing herself during the whole game. It did not stop her one second. The highest level of the U.S.
▶ 1:23:48Sen. Durbin: Courts and justice is the supreme court. There is a woman in a position who since age seven has been dealing with type one diabetes. She's a great asset to our country, as you will all be. The last point I want to make is very important. We have had an impact already and decisions made in terms of funding agencies. Dr.
▶ 1:24:11Sen. Durbin: Rodgers, can you tell me how many niddk employees have left because they were fired, placed on administrative leave, accepted a buyout?
▶ 1:24:24Dr. Rodgers: Thank you, senator. Thank you for what you said prior to that. The right question about the role of the senate in terms of the budget. We appreciate those increases .
▶ 1:24:42Dr. Rodgers: As my boss mentioned at this hearing, the president's budget does recognize a cut but this is really the beginning of a close negotiation and discussion with members on the final budget.
▶ 1:25:02Dr. Rodgers: With respect to the number of workforce, the reductions, some of the reductions were intended to centralize some of nih's administrative function. I can't give you a precise number because retirements continue.
▶ 1:25:21Dr. Rodgers: We are doing the best with the numbers that we have to try to make sure we are as efficient as possible getting funding out to our investigators and making sure the success we have made so far don't take a back step.
▶ 1:25:39Sen. Durbin: Can you tell me how many niddk grants have been suspended or terminated this year?
▶ 1:25:46Dr. Rodgers: In terms of overall terminations, again I cannot comment on the specifics. As you are aware, some of these terminations are currently involved in appeals and litigation. I would have to get back with you on that. I think -- in fact, some of these efforts are governmentwide, well beyond what nih can control.
▶ 1:26:16Sen. Durbin: I don't want to put you on the spot. You are a friend and alley and we have worked together over many years -- ally. The audience I want to make it clear. There have been dramatic cuts made in grants. Some related to type one diabetes. There have been termination of people working in this agency who have critical expertise for the future. If we are going to stop this we have to stand together and say that is the end of it.
▶ 1:26:46Sen. Durbin: Researchers part of making america great. Thank you very much. [applause]
▶ 1:27:00Chair Collins: Thank you. Senator britt.
▶ 1:27:08Sen. Britt: Thank you to all here for being a part of it and lifting your voice and telling your story and working to make change. Ruby, rachel, katie. Incredible. Absolutely incredible. Each of you have a story that will change lives and push research and development forward. I think we have two alabamians here. Matthew. Awesome.
▶ 1:27:39Sen. Britt: When I was reading about you, your quote, "live fully and never let diabetes define you." you are so much stronger than it is. Thank you. Thank you, thank you. [applause] is meg here by chance? I heard you just got your back in spring. Amazing. How old are you?
▶ 1:28:10Sen. Britt: Nine. I'm not sure I could do one at nine. Amazing. Thank you so much for being here , for lifting your voice and making sure all of those in alabama are heard and seen and across the nation. You two inspire me and all others and I really appreciate you being here. I want to thank the researchers. Dr. rodgers, you will have done an incredible job.
▶ 1:28:39Sen. Britt: When you are in front of this committee back in 2023, we had a really good exchange. You shared with me alabama has one of the highest rates of station on diabetes -- gestational diabetes in the country. We discussed when a woman does have gestational diabetes, that it increases the likelihood she will ultimately have diabetes and the infant will as well.
▶ 1:29:08Sen. Britt: My question to you is, what are we doing? How is niddk supporting research on how best to manage diabetes during pregnancy and ensure the health of mothers and children are at the forefront of this research?
▶ 1:29:22Dr. Rodgers: Thank you, senator britt. As some may be aware, current practice in obstetrics and gynecology is to do an oral glucose tolerance test, usually in the third trimester of pregnancy to determine whether a woman has diabetes, gestational diabetes.
▶ 1:29:53Dr. Rodgers: We know, as you indicated, having diabetes and gestational diabetes puts the mother and the child she is carrying out risk of subsequently developing diabetes in the future. Treatment at that level may be too late.
▶ 1:30:13Dr. Rodgers: The period of time of which high levels of glucose have occurred may be present a month, two months, three month earlier. We started to study. Everything in government has to have an acronym. That's an acronym that stands for determining glucose levels in gestational diabetes.
▶ 1:30:42Dr. Rodgers: We are putting on these continuous glucose monitors in the first trimester to determine exactly when this -- the last patient since I spoke with you in 2023 just completed -- just delivered this month that child.
▶ 1:31:01Dr. Rodgers: Similar to the tddy study, we hope to have the result of that analysis looking at these complex pictures that occur on the cgm within the next six months to a year. That will inform us when one potentially should be intervening and then one could better determine whether the earlier intervention has a positive benefit in terms of the mother, follow-up with the infant -- and the follow up the
▶ 1:31:32Dr. Rodgers: Infant.
▶ 1:31:33Sen. Britt: New potential cures for type one diabetes that were published in the new england journal of medicine a few weeks ago and I'm sure everyone here shares that enthusiasm. As a policymaker I want to make sure potential cures for t1d don't take us down the same road is insulin. When it came to the market in 1923, but it is still unaffordable for so many.
▶ 1:32:01Sen. Britt: How do we make sure we balance creating an innovative place in research and development were people rewarded for that but not at the extent of being able to get these incredibly important drugs or treatment to people nationwide?
▶ 1:32:16Dr. Rodgers: Nih does not have a particular role to play in pricing of insulin or other drugs for that matter. Our role is developing cures. People with type one diabetes and is essential number of people with type 2 require insulin to live.
▶ 1:32:40Dr. Rodgers: Our goal is to focus on developing a cure so insulin -- their own cells produce the insulin. We had developed a series of other drugs early on that have gone to industry that can stimulate the insulin production and the remaining cells. That is where we stand. Our goal is to understand and develop treatments, preventions and cures.
▶ 1:33:07Sen. Britt: Last thing. I want you all to hear this from all of us. This is an issue. There are many issues in the news that unfortunately divide us on party lines but this is not one of them. Democrat, republican, we all stand united in making sure we have the research and treatment and availability of these things for each and every one of you. If you will, as a parent myself I have a 15 and 16-year-old.
▶ 1:33:35Sen. Britt: I have a dear friend who has more than one child with t1d. Watching all she does to make sure her child is successful and they have what they need and are ready, it is a constant process. Will all of you incredible delegates join me in giving if you drive applause to the parents who work day and night? [applause]
▶ 1:34:11Chair Collins: Thank you. Sandra baldwin.
▶ 1:34:15Sen. Baldwin: Thank you, madam chair. I want to thank you for your long-term advocacy with the diabetes caucus. To our witnesses, thank you so much for being here to share your stories. It is not often that the appropriations committee has a standing room only audience. I will say hi to the people in the overflow area. I know we have so many here.
▶ 1:34:45Sen. Baldwin: I really appreciate the way you advocate for the special diabetes program and the critical research on type one diabetes supported by the niddk. We have made tremendous progress on a new and better treatment for type one diabetes. Every day we are closer to a cure. That's because advocates like all of you here today who pushed congress to increase funding for this research.
▶ 1:35:17Sen. Baldwin: I was glad senator durbin was here earlier to talk about the history of our efforts in congress to increase funding for the nh, but also -- nih, but also outline the threats that are faced now. I want to be serious about those threats.
▶ 1:35:40Sen. Baldwin: Every month of this year nih is spending less on biomedical research center did last year. At the end of march, nih spent $1.7 billion less than through the same period last year. In mid-may, it was $3 billion less then the same period last year. Now, by the end of june, nih awarded nearly $6 billion less in grant funding.
▶ 1:36:10Sen. Baldwin: Nih said its plan is to award 40% fewer grants this year than last year, which lines up with less and less funding going out the door each month. Our witnesses today have taken on tremendous challenges in their lives. I have no doubt you can handle a tough question. I will start to ask you, katie, thank you for being here.
▶ 1:36:39Sen. Baldwin: What would you like congress to know as nih plans to reduce the number of research -- new research grant awards this year by 40%? What do you think cutting research will mean for children with type one diabetes?
▶ 1:36:57Ms. Bone: It will be longer until we have a cure and easier ways to manage this. The technology we now need a where I can sleep the night, but it is still hard. When there is a cure one day, I will get to sleep through the night and not have to worry about it. That means I can go to training and not feel really terrible because of this.
▶ 1:37:21Ms. Bone: I can go to competitions and not work harder than I've ever worked in my life for years to not perform because of this. That has happened many times. And show up and be fully me and show everybody all the hard work I have done. It means getting to live a fuller life than I have now and getting to achieve the goals I have. Every day a little less hard.
▶ 1:37:48Sen. Baldwin: Thank you. Dr. rodgers, at a hearing last month I pointed out a major change the administration made to the way nih is proposing to find grants, by forward funding half of them in the first year. The scheme which the scheme whiould reduced the number of grants by thousands across the institute.
▶ 1:38:16Sen. Baldwin: Nih can do this unilaterally effectively making billions more in cuts to research and in cuts to research a unless congress steps in. That's why I have been raising the alarm about delayed nih.
▶ 1:38:31Sen. Baldwin: Nih is either going to not spend funds congress has appropriated or rush funding out the door through this new and haphazard scheme of forward funding that will result in devastating cuts to research funding this year and next year. Dr. rodgers, how will diabetes research be affected if niddk awards 40% fewer grants this year than last year?
▶ 1:38:59Sen. Baldwin: What will that mean for patients with type one diabetes who are anxiously waiting for a cure?
▶ 1:39:04Dr. Rodgers: Senator, thank you for your question. We are doing our best to spend all the money that congress has provided to us. I would note the budget for the special diabetes program is extended in the president's budget. We are committed to ensuring the U.S. remains the global leader in research.
▶ 1:39:34Dr. Rodgers: As he pointed out when he testified to this committee, the efforts underway in terms of discussions that are ongoing with congress to try to make adjustments and come up with a final decision is something that is going to take ongoing effort. I really applaud him for what he's doing.
▶ 1:39:59Dr. Rodgers: Obviously, you know, more funds allows for us to do more which is why the special diabetes program has been so effective. It is apart from our normal appropriations. We are committed to doing what we -- to do what we have in the most efficient way as possible moving forward.
▶ 1:40:20Sen. Baldwin: Thank you, madam chair.
▶ 1:40:22Chair Collins: Senator moran.
▶ 1:40:33Sen. Murroran: I don't feel old. In today's hearing I felt significantly older than the audience but I'm delighted you are all here. Your presence makes a difference. It highlights for us on a regular basis the importance of medical research. It's always useful for us to see the individual lives impacted.
▶ 1:40:57Sen. Murroran: Things can be about numbers and they can be about dollars, but in order to get our attention and get the necessary action on our part it is useful to see humans, our friends, neighbors, constituents, family members are impacted.
▶ 1:41:13Sen. Murroran: I appreciate all of you being here today and making the case for sufficient resources necessary while senator collins has not yet introduced her bill, sheintroduction. Senator collins, I will not say I will cosponsor the bill until I meet with my juvenile diabetes kids from kansas so I can tell them first.
▶ 1:41:42Sen. Murroran: Trusting your judgment and capabilities and expertise and knowledge you and senator shaheen, your dedication, there's a likely support from kansas for the passage of this legislation. [applause] there are many things about working in the united states senate, being a member of congress that bring challenges to you.
▶ 1:42:12Sen. Murroran: This is one of them. This is the circumstance in which most of us, if not all of us get significant reward when we see the opportunities we have to make a difference in people's lives. I have said numerous times when we debated and discussed funding and support for nih, the business we are in, the same business we are in this morning is to provide hope. Hope there's a brighter future. Hope there is fewer people affected by diabetes.
▶ 1:42:41Sen. Murroran: Full full that the cures are more effective and we can rid ourselves and families and children from juvenile diabetes. I'm really pleased to be here and lend my support to this effort. Dr. rodgers, you have been an expert, provided your expertise. I think you for your public service and commitment to finding cures and treatments and tell me, if you would, you have been here since 2007.
▶ 1:43:10Sen. Murroran: What is the most important -- impactful advances in understanding and treating type one diabetes you have had in your tenure? More important, tell me what the future looks like.
▶ 1:43:22Dr. Rodgers: Thank you, senator. I think I would highlight a few, some of which I mentioned in my opening statement. The idea now and the time we have a drug available that is fda approved that can prevent by at least three years a substantial number of individuals that develop type one diabetes. It's a very important advance.
▶ 1:43:52Dr. Rodgers: One that we hope to replicate, because on the drawing board or in the pipeline a series of other drugs you can use alone or in combination that might yield the equivalent perhaps even better results. Having therapies now to be a biological cure is something I'm very excited about.
▶ 1:44:16Dr. Rodgers: The possibility to report to you perhaps in the two years from now or maybe four years now of that success is very important to me. This teddy study with these 8000 kids, we have 5 million samples that the kids and their parents have generously provided to us. It's already giving us ideas.
▶ 1:44:46Dr. Rodgers: We know for example even before we do the final analysis we have been able to detect proteins in the serum of kids at high risk that may determine or advance the likelihood the kid will develop clinical. To get these kids into tentative studies is very important. -- preventive studies is very important.
▶ 1:45:14Dr. Rodgers: Thinking about using your own stem cells, to get them encapsulated, work with chemical engineers to develop a way to expand and get these cells so the antibodies don't attack it but get the insulin out, that's extremely exciting. We are taking a page from the oncology and immunologist field.
▶ 1:45:46Dr. Rodgers: Something you may have heard one, car-t cells and applying that as a way to prevent the ongoing autoimmune disease potentially in individuals with type one diabetes from attacking either their existing cells or potentially transplanted cells. That is something I look forward to reporting to you in the upcoming meetings. I'm very excited about the results. I have to say with a lot of thanks and appreciation for the special diabetes program.
▶ 1:46:17Dr. Rodgers: This would not be possible at all without your ongoing support.
▶ 1:46:20Sen. Moran: Thank you. I usually hear about those cells in regard to cancer research. It is good to know the potential opportunity that exists here. We have seen such significant outcomes, improvement in outcomes and cancer. Thank you.
▶ 1:46:37Chair Collins: Senator van hollen.
▶ 1:46:42Sen. Bennet: Haaland -- Sen.
▶ 1:46:48Benvan Hollen: Thank you all for your leadership. I received letters from two marylanders were part of the children's congress. One is from garrett cohen who is diagnosed when he was two.
▶ 1:47:16Benvan Hollen: I rely on an insulin pump and continuous glucose monitor to keep my blood sugar in range. I must monitor them all the time. I also received a letter from andrew manitos. "the day after my seventh birthday, I found out I had type one diabetes. Having type one diabetes is not easy. I have many sleepless nights.
▶ 1:47:40Benvan Hollen: I have to miss class, sports, and have to go to the hospital if my blood sugar goes too low or high. Even with type one diabetes, I don't slow down. " as long as we make sure all of you have what you need, you don't have to slow down either. I want to thank rubi and rachel and katie for your testimony. I have one question.
▶ 1:48:10Benvan Hollen: I don't know which is in the best position to answer. Based on what andrew said, the challenges he faces whether it is sports activities or other school related activities and having to balance that with dealing with type one diabetes, how do you go about juggling that? Would you be able to do what you do without the advances we have made so far?
▶ 1:48:40Ms. Bone: It's incredibly hard every day to deal with it. Without the advances it would be significantly harder. It would be doable. Everyone here could still be successful but it would be a lot harder and a lot more mentally taxing. As it is, diabetes is mentally very hard every day. Personally for me, I've had a lot of anxiety and depression due to it.
▶ 1:49:08Ms. Bone: Being able to see my blood sugar in real time and easily give myself a little bit of insulin has made that a lot easier for me.
▶ 1:49:14Sen. Van Hollen: Thank you. The personal stories you bring to this are really essential to giving us an understanding of why all this is so important. Dr. rodgers, I heard your testimony about how you believe we made a lot of progress but also on the cusp of additional progress. We all hope to find a cure.
▶ 1:49:38Sen. Van Hollen: I assume if you saw a significant cut in your resources, it would make it harder to achieve these new breakthroughs. Is that not the case?
▶ 1:49:49Dr. Rodgers: Senator, the more you have -- I frequently tell my staff every other year we have an initiative meeting for two years from the. I tell them no matter what our budget is, better to have good ideas and no money then to have money without any good ideas. We are always in a position which we have to prioritize what we do to ensure we continue to be successful.
▶ 1:50:20Dr. Rodgers: We might have to cut back. We may have to slow down or maybe not start something new but we have to make sure the progress that is achieved does not fall behind. I remain committed. When you enroll people in clinical studies you have to see it through completion. Particularly if they look promising. That's obviously a priority I have.
▶ 1:50:47Sen. Van Hollen: Understood. You need good ideas but you need the resources to match the good ideas or they sit on the table.
▶ 1:50:56Dr. Rodgers: That's correct.
▶ 1:50:57Sen. Van Hollen: I want to make sure they are not good ideas out there that could lead to a cure and we are not providing the resources to pursue. I want to thank you for the work you do. I want to thank all the delegates here. I will say, senator collins, I was proud to cosponsor your earlier we authorization and cosponsoring the next reauthorization. Thank you. [applause]
▶ 1:51:30Chair Collins: Thank you, senator. Senator ossof. >> thank you for convening the hearing. It's powerful to be in the presence of so many young people thank you for being here with us. For holding elected officials accountable for your presence an example. Thank you to our witnesses as well. Dr.
▶ 1:51:57Chair Collins: Rodgers, nih collaborates with cdc on the special diabetes program, correct?
▶ 1:52:07Dr. Rodgers: That is correct.
▶ 1:52:09Sen. Ossoff: You had positive working relationships with your colleagues at the cdc?
▶ 1:52:16Dr. Rodgers: Very positive. I mentioned the search for diabetes in the youth, which was funded through the special diabetes program. It is not only the texting that there has been -- detecting that there has been an increase in the incidence of type one diabetes, but also in type 2 diabetes. What I was taught in medical school, we called it adult onset but we are seeing this now in kids 10, 12, 14.
▶ 1:52:46Dr. Rodgers: That would not be possible without the collaboration that is long-standing with the centers for disease control.
▶ 1:52:52Sen. Ossoff: I appreciate your work at nih. The cdc does vital work for the nation.
▶ 1:52:58Dr. Rodgers: Correct.
▶ 1:52:59Sen. Ossoff: You don't produce the budget requests. This is not directed at you personally. I want to raise once again for the committee and the public my bitter opposition to the trump administration's proposal to cut the cdc budget by more than half in fiscal year 22 any -- fiscal year 26, which will have
▶ 1:53:29Sen. Ossoff: A devastating impact on health research to defend the american public from deadly diseases. I would note, madam chair, that the administration's budget request proposes to eliminate entirely the cdc's diabetes division responsible for data collection and research and eliminate entirely the cdc's division of nutrition, physical activity and obesity.
▶ 1:54:00Sen. Ossoff: I will fight this effort to destroy the cdc with everything I have as a member of the united states senate. If we on a bipartisan basis in the senate do not defeat this effort to gut the cdc, the american people will pay for it in lives, and suffering for decades to come. Thank you again, Dr.
▶ 1:54:28Sen. Ossoff: Rodgers, for your work with nih and request your assurance any information the committee may need in order to better understand your activities and also your collaboration with the cdc and vital role the cdc plays in defending the nation you will provide to the best of your ability to this committee.
▶ 1:54:47Dr. Rodgers: You have it, senator.
▶ 1:54:50Sen. Ossoff: I want to ask about ensuring diverse communities across the united states have access to information and treatment. I note with concern the diabetes impacts every community in the united states.
▶ 1:55:10Sen. Ossoff: In georgia, the hispanic community is about 1.5 times more likely to be diagnosed with diabetes. There was a project at the university of georgia.
▶ 1:55:25Sen. Ossoff: An nih grant was awarded to develop new tools with language access, bilingual and multilingual tools to help improve the hispanic community's access to information about diabetes, about staying on top of insulin and blood sugar levels and treatment, as well as to be able to diagnose diabetes earlier.
▶ 1:55:47Sen. Ossoff: Can you speak broadly to the importance of ensuring that diagnostic tools and treatment information are widely accessible to diverse communities across the united states?
▶ 1:55:59Dr. Rodgers: I would say that goes without saying. The current director has mentioned that at his hearing. We want to make sure advances in medical treatments serve all communities.
▶ 1:56:20Sen. Ossoff: I will be following up with the director's office about this canceled grant to the university of georgia. I know that is not your decision and your prerogative. I appreciate your work on behalf of the american people in your presence at the hearing today.
▶ 1:56:35Dr. Rodgers: Thank you. [applause]
▶ 1:56:43Chair Collins: I am delighted to call my friend and colleague senator hoevan. There's a roll call vote so I believe senator hoevan will be a last question are in we will wrap up this great hearing.
▶ 1:57:04Sen. Hoeven: You are perfectly color-coordinated with the children's congress.
▶ 1:57:12Chair Collins: That was on purpose. [applause]
▶ 1:57:21Sen. Hoeven: It truly reflects the empathy you have. I know how much you care and how hard you work to be a strong advocate for all these young people and many others. I went to acknowledge off the bat that nina from hillsboro, north dakota is here somewhere. Are you here? I know I'm going to meet with you later.
▶ 1:57:46Sen. Hoeven: I think she is here with all of you and I want to thank you all for coming and let you know there is some but here from my state and I look forward to meeting with her later on today. It is truly inspirational to see all of you. You make a difference. You make a difference. Good for you. Ruby, I would like to start with you.
▶ 1:58:09Sen. Hoeven: What are some of the biggest challenges you face that you wish more people and we as lawmakers understood when it comes to type one diabetes?
▶ 1:58:21Ms. Whitmore: I think how hard it is to have to think about it all the time. I know this has been said a couple of times but you don't get a break from it ever. As katie said, even when you were sleeping you do not get a break from it.
▶ 1:58:43Ms. Whitmore: It might go away for a couple of hours when you are asleep, but as soon as you -- as soon as it beeps it starts all over again. I just want people to know it affects so many people. Not just the people here but their families in the millions of other people who also have type one diabetes.
▶ 1:59:06Sen. Hoeven: I understand. Rachel, your story helps -- you have a demanding academic schedule, athletics, all those things. Tell us about your support systems at home and at school. I think that is something that's informative not only for us as policymakers but for others in the room.
▶ 1:59:34Sen. Hoeven: What are the support systems at home and school that have helped you accomplish all the things you are doing?
▶ 1:59:40Ms. White: I'm grateful to have my mom and dad here. They are very helpful, especially with changing my pods and continuous glucose monitors. I have them here on my arm. They are very helpful with helping me managing it and reminding me from going low or high. I'm a high level tennis player.
▶ 2:00:05Ms. White: Especially during a tennis match when I can't always be looking at my number when I'm in the middle of a match. My mom especially helps me by making sure I know when you have juice if I'm going low or giving the insulin. I'm grateful to have them. They are awesome parents.
▶ 2:00:21Sen. Hoeven: My daughter play tennis. She played tennis and her mom was her biggest supporter and advocate. In those tough matches she would say bear down, bear down. I don't know if my daughter liked it. Does your mom have a certain saying that encourages you?
▶ 2:00:37Ms. White: I don't know if she has a certain saying but she's always in my corner cheering. Even in the not so great moments when I'm not playing my best. She's always in my corner, always cheering me on and always supporting me.
▶ 2:00:50Sen. Hoeven: That's awesome. Speaking of athletics, katie, amazing what you can do. I always wanted to be a ninja warrior. [laughter] I felt woefully short. I admire you.
▶ 2:01:12Sen. Hoeven: What would you say -- obviously you show and are showing that anybody can accomplish whatever they truly set their mind to do. How would you advise people to be successful, have the kind of determination and grit it takes to accomplish whatever they want? What would be the advice he would give them?
▶ 2:01:34Ms. Bone: Never give up. If it is something you really want to do, it will not be easy but it will be worth it. My sports outside of diabetes, getting to the point I have gotten has been very hard. I would be up at 5:00 a.m. For strength and conditioning. I would go to school and then at the gym for six hours and then get home and still have to do school and try and recover and go to bed. On top of that I still have diabetes.
▶ 2:02:04Ms. Bone: It has taken so much work and years to get to the point I met. Everybody here -- I've gotten comments about this, that I make it look easy and it's not. It's ok to struggle in ok to feel the emotions and feel not ok. But it is worth it. Getting to your goals and what you have always dreamed of doing is worth it.
▶ 2:02:28Ms. Bone: For me, I wanted to go to the olympics since I was three years old and it was something I never stopped reaching for even that there were more bumps in the road than anybody will ever know.
▶ 2:02:41Sen. Hoeven: I think you summed that up so well. The work ethic and what goes into achieving what goes into winning. I love football and the chicago bears were a long time ago really good. They had a coach named mike ditka. He said there's a lot more to winning than just wanting to. You summed up perfectly all the hard work. Hard work.
▶ 2:03:07Ms. Bone: People see the trophies in the goals and records for the don't see the tears in hard work it takes to get to that point and what I'd had to do to get to that point. Yeah. Never give up. If it is what you want, it is very worth it.
▶ 2:03:25Sen. Hoeven: I don't think anybody could have said it better or demonstrated it. Thanks to all of you. Thanks for being here. [applause]
▶ 2:03:35Chair Collins: Thank you. Thank you, senator. I want to end this hearing on a hopeful note. Katie summed it up best when she said never give up. I want to assure you that we are your champions. We will never give up until there is a cure.
▶ 2:04:03Chair Collins: [applause] and in the decades I have personally worked on this issue from when I first founded the senate diabetes caucus way back in 1997, I can't tell you the progress that has been made.
▶ 2:04:31Chair Collins: I think of those old heavy pumps that were loved around. Now we have the continuous glucose monitor. That was because of the federal investments in research. We heard Dr. rodgers talk about the exciting new medication that can delay the onset for as much as three years of type one diabetes for those who are prone to it.
▶ 2:05:01Chair Collins: We know there is research underway even as we meet here that is the pathway -- one of the pathways to ultimately discovering a cure. I want to thank all of you for being here today, particularly eyewitnesses who did such a fabulous job. Ruby, rachel, katie, Dr.
▶ 2:05:29Chair Collins: Rodgers , thank you so much for being here and for doing a wonderful job. [applause] so our hearing record will remain open until july 16 for any additional questions or materials that may be submitted.
▶ 2:06:01Chair Collins: Let me just have my final statement be a thank you you to all the delegates who are here. See the difference you made? I have already got more cost sponsors -- cosponsors for a bill I just put in with senator shaheen yesterday. So keep up the good work.
▶ 2:06:22Chair Collins: [applause] thank you so much. This hearing is now adjourned.