Hundreds Advocating for Type 1 Diabetes Funding at 2019 Children’s Congress

The fight for federal funds for type 1 diabetes is center stage in Washington, D.C. today, July 8, as hundreds of children with the disease, along with celebrities from television, film and sports, meet with Congress.

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Organized by the JDRF, the three-day 2019 Children’s Congress begins today. Delegates will urge Congress to renew the Special Diabetes Program for another five years before federal research funding ends on Sept. 30, 2019. The program provides $150 million annually for type 1 diabetes research. Renewing the funding for the research is one of the JDRF’s top legislative priorities.

The event will include a Senate hearing on Wednesday, July 10, chaired by Senator Susan Collins (R-Maine) and Senator Bob Casey (D-Pennsylvania) featuring testimony from several people living with the disease, including accomplished actors, athletes and others.

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“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.”

Joining Dr. Kowalski before the committee is Victor Garber, the Emmy and Tony nominated actor. Garber was diagnosed with type 1 diabetes at 11 years old and raises awareness and advocates for people with type 1 diabetes. He discusses 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 Special Diabetes Program.

For more on one young JDRF ambassador who has raised nearly $50,000 for type 1 diabetes research, click here. 

Two delegates from the 2019 Children’s Congress also will share their experiences of living with type 1 diabetes. They are:

  • Ruby Anderson, a 9-year-old from Yarmouth, Maine, who was diagnosed with type 1 diabetes 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 will meet with senators and representatives to advocate for type 1 diabetes research. The autoimmune disease 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 Special Diabetes Program’s renewal.

“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 high cost of insulin will also be discussed. 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 says it 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.

 

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