We are so excited to share highlights from the big day of diabetes advocacy on Capitol Hill. In the morning, the 160 delegates and their guardians traveled to Capitol Hill to listen to the testimonies of various diabetes advocates, including actor Paul Sparks, Children’s Congress Delegates Mr. Charlie Albair and Ms. Lorynn Watt, Children’s Congress chair Ms. Angie Platt, and director of the NIDDK Dr. Griffin Rodgers. We encourage you to watch the thoughtful and impactful hearing here.

Senator Susan Collins chaired the hearing – it was a big deal to see Senator Collins throughout so much of the week and representing strong voices from Maine. Though she has not been directly touched by type 1 diabetes, she shared that after she attended the Children’s Congress hearing about ten years ago, she was so moved that she began the first Diabetes Caucus in the Senate! Today, nearly 75% of all Senators belong. As she showed in spades again last week, Senator Collins has been and continues to be a huge advocate for both the Special Diabetes Program (SDP) and the general diabetes community. It was a thrill when Senator Jean Shaheen also joined the leaders and shared the story of 17-year-old Elle Shaheen and her beloved dog Coach, who has saved her many times from severe hypoglycemia. The bionic pancreas was raised along with smart insulin and other technologies in development, and one could sense palpable excitement in the room.

Mr. Sparks, the first testifier, discussed the importance of research in diabetes care, and how new advances allow the patient to have some control over their condition. He described how he uses a CGM device and Afrezza inhaled insulin to help manage his diabetes – he met Dr. Aaron Kowalski and saw a CGM for the first time some years back (when they did a Marathon together) and his words were so compelling about when he first saw a CGM “And I found out I could get one of those. It has saved me.”. He provided a demonstrative - and scary - example of the need for and dependence on research: three years ago, Mr. Sparks turned off his CGM so that his pregnant wife could sleep through the night without any beeping. Because he’d switched it off, it did not alert him when he was becoming hypoglycemic, and woke up to a frightened pregnant wife, a crying four-year old, and seven New York City EMT’s standing over him.

Seventeen-year-old Ms. Watt shared a tear-jerking story of her own life with type 1 diabetes. Her father, who had type 1 diabetes, passed away less than one year after her diagnosis at age nine. He didn’t have access to advanced care or technologies, and a difficult series of complications led to his ultimate passing. Ms. Watt provided a compelling case for the need for more research and access because, as she said, “no one—including all the kids in this room today—should lose their life because of T1D.”

Ten-year-old Mr. Albair furthered these thoughts with his own testimony, where he discussed his developing independence using new technologies. With his friends, he calls the CGM beeps his “natural robot noise.” When he is older, Mr. Albair wants to play for the Boston Red Sox. Though he is able to set high aspirations and embrace his diabetes positively, he still said, “I want my disease to go away—for me and all the other kids who suffer from it. I want us all to be able to live without thinking about it.” And, very coyly, he told the Senators that if they supported the renewal of SDP, he’d invite them all to a game when he is on the Red Sox team! No doubt there was great appeal with the confident young man speaking up!

The brainy and charismatic Children’s Congress chair Ms. Angie Platt spoke about her 14-year-old son Jonathan who lives with T1D. Jonathan has been on the pivotal 670G trial for over a year now and has been able to play basketball incredibly well even with diabetes. In fact, Ms. Platt said so movingly that she actually had forgotten Jonathan even had diabetes with the 670G – but had been reminded by an early coach and mentor, who remarked upon how clearly well Jonathan was doing. Indeed! Jonathan was present for the commentary and helped advocates so much everywhere when he answered some questions spontaneously and movingly about the new technology. He and Ms. Platt called for action and more research in care, complications, and prevention. What powerful speakers they both were!

Expert Dr. Rodgers gave a thorough overview of the new technologies and therapies on the horizon in diabetes care, including the bi-hormonal hybrid closed loop system, islet cell encapsulation, and anti-VEGF drugs to treat diabetic macular edema, a diabetic eye disease. We loved listening to him discuss research, especially on eye disease, where there has been so incredibly much advancement.

Overall, this hearing delivered a significant impact to the Senators in attendance. After the hearing, all the Delegates split off to meet with their specific state and county representatives. With young children and teens telling their stories to these representatives, and advocating for the SDP eloquently and persuasively, JDRF’s Children’s Congress surely made an impression. The SDP has made an incredible difference in advancing diabetes interventions to where they are today and delegates were oh-so-compelling in noting how critical the funds were for current trials, which would end abruptly without the funding and without any results. We hope this impact translates into positive results and a 3-year renewal of SDP in September!

Divya Gopisetty, Nikhita Gopisetty, and Coco Close contributed to this piece.