In a packed U.S. Senate hearing room, JDRF Children’s Congress Delegates, medical leaders and celebrities today shared the personal, critical need for ongoing federal funding of research for type 1 diabetes (T1D).
The two senators leading the hearing responded with promises to fight on behalf of everyone in the hearing, and the entire T1D community they came to advocate for.
The hearing was hosted by the Special Committee on Aging, led by Senator Susan Collins (R-ME), Chairwoman of the U.S. Senate Special Committee on Aging and co-chair of the Senate Diabetes Caucus, and Ranking Member Robert Casey (D-PA).
“By the end of September, Congress must pass legislation to reauthorize the Special Diabetes Program,” which has historically driven $150 million toward T1D research annually, said Collins.
“Securing stable funding for medical research is only one part of the agenda,” said Casey. He stressed the need for Congress to also help ensure that families can afford the insulin, devices and drugs needed to manage T1D every day.
The hearing featured testimonies by actor Victor Garber, who was diagnosed with T1D at age 11; youth delegates Ruby Anderson, 9, of Yarmouth, Maine, and Adriana Richard, 16, of Milton, Pennsylvania; Griffin Rodgers, M.D., national director, National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK); and JDRF’s President and CEO Aaron J. Kowalski, Ph.D.
The hearing was part of the three-day JDRF Children’s Congress 2019, which brought more than 160 youth delegates from around the world and celebrity role models to Washington, DC, to advocate for ongoing research funding and coverage, affordability and choice of therapies to help those with T1D stay healthy until there is a cure.
Following the hearing, the delegates met with Senators and Representatives from their home states to share their stories and make a personal ask for ongoing support.
A replay of the hearing can be viewed here.
Highlight comments made during the hearing are below.
Ruby Anderson, 9, Maine
“Type one diabetes is really hard to manage . . . I wish my type one diabetes would just disappear.
“And Senators, I don’t want my brother or sister to get T1D.
“We need more research to find a cure. We need even better devices. And we need to figure out what causes T1D so we can stop it. All of the kids here at JDRF’s Children’s Congress need you to continue to support us.
“When I grow up, I want to be a scientist—partly because T1D research is so important. And if they haven’t found a cure for the disease by then, I will. And when we have a cure, I’m going to have a party and invite everyone in the whole entire world. Senator Collins, you will be first on my list.
“Thank you for listening and for all you do for kids like me.”
Adriana Richard, 16, Pennsylvania
“I am here today to share my voice as an advocate for people with T1D because I have been motivated by the struggles I have experienced.
“I was diagnosed . . . when I was 5 years old. All I remember . . . is that my parents were scared for me.
“My life with T1D is easier with . . . technology, which is thanks in part to funding from the Special Diabetes Program.
“We are so close to finding cures for diabetes and if we stop research now there is no way we will ever find it. We need the SDP for research to help our everyday lives with T1D—to help scientists and engineers invest in things like CGMs that have changed my life.
“I am grateful that as a resident of Pennsylvania that the cost of my insulin is zero dollars because it’s fully covered as a life-sustaining medicine under Medicaid.”
Victor Garber, Actor, living with T1D since age 11
“I remember vividly that my diagnosis was a traumatic event for my family . . . I have a distinct memory of [my mother] standing on the porch as my father drove me to the doctor. The fear and desperation in her eyes remain an indelible image in my mind.
“Whenever I meet the mother of someone with type 1 diabetes, I am brought back to that moment, to that confusion, panic and uncertainty, which is why I am so determined to do everything I can to help find a cure for this disease.
“I’m so fortunate to be able to afford insurance that allows me to choose the best insulin pump and glucose monitor for my specific lifestyle. This should be everyone’s right.
“I am lucky to have good health insurance, but I am still paying far more than I should be, for the life-saving drug that I would die without. Senators, this is simply unacceptable. Dealing with type 1 diabetes is already hard enough.”
Griffin P. Rodgers, M.D., National Director, NIDDK
“Through the invaluable support of Congress, through collaborative and coordinated research efforts, through the hard work of our scientists and through the dedication of our clinical research volunteers, we have made important progress toward our goals of understanding, preventing, treating and ultimately curing type 1 diabetes.”
Aaron J. Kowalski, Ph.D., JDRF President and CEO
“Your leadership has led to significant breakthroughs and is leading us closer to our ultimate goal of curing type one diabetes.
“Diabetes impacts every aspect of life. These children do so much hard work to manage their diabetes—they are truly amazing and their parents are, too. Each of these families can share countless stories about how difficult T1D can be, as can mine.
“We know that people with diabetes achieve better results when they can select tools that are best for them.
“It is unacceptable for anyone to ration their insulin because of cost.
“Senators, let me say, that [T1D] research is too important to have an expiration date.”