Youth Delegates Living with Type 1 Diabetes and Jimmy Jam, Member of the Rock & Roll Hall of Fame, and Type 1 Diabetes Parent
Provided Testimony at a Senate Appropriations Committee Hearing More than 1.4 million Americans live with type 1 diabetes, an autoimmune condition that causes the pancreas to make very little insulin or none at all
WASHINGTON, July 11, 2023 /PRNewswire/ — Today, JDRF, the leading global type 1 diabetes (T1D) research and advocacy organization, urged members of the Senate Appropriations Committee to renew the Special Diabetes Program (SDP) and support policies to ensure insulin is available at an affordable and predictable price. Opened by U.S. Senator Patty Murray (D-WA) and led by U.S. Senators Susan Collins (R-ME) and Jeanne Shaheen (D-NH), the hearing took place during the 2023 JDRF Children’s Congress, a biennial event that brings over 160 kids and teens living with T1D face-to-face with lawmakers and top decision-makers. The youth delegates traveled to Washington, D.C. from across the country and JDRF’s international affiliates in the United Kingdom, Australia, the Netherlands, and Canada.
The SDP has accelerated the pace of T1D research through a long-term investment of funding at the National Institutes of Health. The program has led to significant scientific breakthroughs, including Tzield, the first disease-modifying treatment for T1D, which can delay the onset of the disease by over two years. Without Congressional action, the SDP will expire at the end of September.
“The Special Diabetes Program has fundamentally changed what it means to live with diabetes, put new life-changing therapies in our hands, and brought us closer to cures,” said Aaron Kowalski, Ph.D., JDRF CEO. “We must keep this momentum going so we can capitalize on the progress to date and realize cures. However, until we have cures, people need access to affordable insulin. JDRF urges Congress to pass the bipartisan INSULIN Act of 2023, which will establish a $35 per month insulin copay cap for people with commercial insurance and includes other provisions that would make insulin more affordable for everyone, regardless of insurance status.”
Dr. Kowalski was joined at the hearing by Dr. Griffin Rodgers, Director of the National Institute of Diabetes and Digestive and Kidney Diseases at the National Institutes of Health, who provided testimony on the scientific value of the SDP, and Jimmy Jam, award-winning producer, songwriter, musician, member of the Rock & Roll Hall of Fame, and T1D parent.
“My son Max, who is now in his twenties, was just two years old when he was first diagnosed with type 1 diabetes. Late nights working on music became late nights working on music and waking up my son to test and manage his blood sugar levels,” said Jimmy Jam. “Type 1 diabetes should be one of those things we can all agree on. Diabetes doesn’t care if you’re a Democrat or a Republican. We can all agree that there should be research to improve the lives of those with diabetes. We can all agree that insulin should be affordable for all who need it.”
Two 2023 JDRF Children’s Congress delegates shared their T1D experience with the committee:
Maria Muayad: 10-year-old Maria is from Maine and is a member of her school’s civil rights club and math challenge group. Every November, Maria, and her mother, Golsin, give blue ribbons to the staff at her school in honor of National Diabetes Awareness Month.
Elise Cataldo: 15-year-old Elise lives in New Hampshire and is passionate about educating those around her about life with T1D and tries to use things like pump site changes and blood sugar checks as opportunities to help others learn.
Following the hearing, the 2023 JDRF Children’s Congress delegates continued their advocacy by meeting with lawmakers in their Capitol Hill offices.
JDRF’s mission is to accelerate life-changing breakthroughs to cure, prevent and treat T1D and its complications. To accomplish this, JDRF has invested more than $2.5 billion in research funding since our inception. We are an organization built on a grassroots model of people connecting in their local communities, collaborating regionally and globally for efficiency and broader fundraising impact, and uniting on a global stage to pool resources, passion, and energy. We collaborate with academic institutions, policymakers, and corporate and industry partners to develop and deliver a pipeline of innovative therapies to people living with T1D. Our staff and volunteers throughout the United States and our five international affiliates are dedicated to advocacy, community engagement, and our vision of a world without T1D. For more information, please visit jdrf.org or follow us on Twitter (@JDRF), Facebook (@myjdrf), and Instagram (@jdrfhq).
About Type 1 Diabetes (T1D)
T1D is an autoimmune condition that causes the pancreas to make very little insulin or none at all. This leads to dependence on insulin therapy and the risk of short or long-term complications, which can include highs and lows in blood sugar; damage to the kidneys, eyes, nerves, and heart; and even death if left untreated. Globally, it impacts nearly 9 million people. Many believe T1D is only diagnosed in childhood and adolescence, but diagnosis in adulthood is common and accounts for nearly 50% of all T1D diagnoses. The onset of T1D has nothing to do with diet or lifestyle. While its causes are not yet entirely understood, scientists believe that both genetic factors and environmental triggers are involved. There is currently no cure for T1D.
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