At Senate hearing, actor Victor Garber, JDRF’s President and CEO Aaron Kowalski, and children with type 1 diabetes to advocate for renewal of the Special Diabetes Program


WASHINGTON, D.C. (July 8, 2019) — JDRF is bringing leading voices in the type 1 diabetes (T1D) community, including more than 160 children with the disease, to Washington today. They will urge Congress to renew the Special Diabetes Program (SDP) for five years before critical funding for federal research at the National Institutes of Health runs out on September 30, 2019.

The three-day 2019 Children’s Congress begins today and includes a Senate hearing on Wednesday led by Senator Susan Collins (R-ME) and Senator Bob Casey (D-PA). At the hearing, people living with T1D, along with the director of the National Institute of Diabetes and Digestive and Kidney Diseases, will outline how the SDP is improving lives and advancing research to treat, prevent, and find cures for the disease.

The July 10 hearing before the U.S. Senate Special Committee on Aging is titled “Redefining Reality: How the Special Diabetes Program is Changing the Lives of Americans with Type 1 Diabetes.”

“We are extremely grateful to Senator Collins and Senator Casey for leading this important hearing on the impact of the Special Diabetes Program,” said Aaron J. Kowalski, PhD, JDRF President and CEO. “They are true champions of the T1D community, and we appreciate their long-time dedication to research benefiting every person living with this disease.”

Dr. Kowalski will testify before the committee. Also providing testimony is Victor Garber, the Emmy® and Tony® nominated actor who has starred in memorable works of film, television, and stage. Mr. Garber was diagnosed with T1D at 11-years-old and generously raises awareness and advocates for people with T1D, including on issues such as research funding and the cost of insulin.

Also testifying is Griffin P. Rodgers, MD, MACP, Director of the National Institute of Diabetes and Digestive and Kidney Diseases at the National Institutes of Health since 2007. Dr. Rodgers will outline the scientific value of the SDP. Dr. Rodgers provides scientific leadership of the SDP — a research program that has led to advances that have improved the lives of people with T1D.

Two delegates from the 2019 Children’s Congress also will share their experiences of living with T1D:

  • Ruby Anderson, a 9-year-old from Yarmouth, Maine, was diagnosed with T1D at just 23 months old. At her school, she encourages her classmates to “Wear Blue for Roo” on World Diabetes Day.
  • Adriana Richard is a 16-year-old from Milton, Pennsylvania. She has written a book, The Real T1D, and has championed a JDRF One Walk that raised more than $10,000.

After the hearing, delegates of the Children’s Congress from all 50 states and several role models from the sports and entertainment industry will meet with Senators and Representatives to advocate for T1D research into this autoimmune disease, which affects 1.25 million Americans. Joining them will be five international delegates traveling from Australia, Canada, Israel, the Netherlands, and the United Kingdom. Legislative progress to date includes 68 Senators and 378 Representatives signing letters to their leadership calling for the SDP’s renewal, which currently provides $150 million in research funding each year. In addition, Senate bill 1895, which recently passed out of committee, and House bill 2668 include five years of funding for the SDP.

“We have come to Washington to show our gratitude to Members of Congress for supporting T1D research — and also to let them know in specific ways how their support is changing lives of people with T1D,” Dr. Kowalski said. “We are at a pivotal time right now in advancing life-changing therapies and cures, and long-term renewal of the SDP is essential to achieving our vision of a world without T1D.”

The delegates and JDRF leaders also will urge Members of Congress to support annual funding for the NIH and the U.S. Food and Drug Administration (FDA) so these federal agencies can continue their critical work on behalf of people with diabetes. Also on the agenda during these talks is the cost of insulin, a medication that people with T1D need to stay alive. JDRF has been strongly advocating to health plans, employers, manufacturers, and the government to take steps to lower out of pocket costs of insulin. JDRF supports the Administration’s anti-rebate rule change that would end drug rebates in federally-funded health programs and has asked Congress to end rebates in the commercial sector to help lower the cost of insulin.

Members of the T1D community across the nation raise funds that enable JDRF to support more than $100 million in research each year. But funding from the federal government is still needed to unlock the science of T1D—to find treatments that improve lives today as well as fund future cures for the disease. Together, this combination of federal diabetes research funding and JDRF’s private investment constitutes one of the world’s most effective public-private partnerships focused on curing a chronic disease.

JDRF is the leading global organization funding type 1 diabetes (T1D) research. Our 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 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 for efficiency and broader fundraising impact, and uniting on a national 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 six 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