Youth from the Carolinas lobby Congress for research funding for Type 1 diabetes

Youth living with Type 1 diabetes from across the nation descended upon the Capitol this week to make a big ask to lawmakers.

JDRF, an organization that’s working to find a cure for the autoimmune disease, held its 12th Children’s Congress.

They want a renewal of the federally funded Special Diabetes Program.

It has been in place since 1999, providing $150 million annually toward research at the National Institutes of Health. That research has been credited with the technologies helping manage the disease today.

“They don’t realize how much actual effort you have to put it to manage your diabetes and keep your blood sugars at a normal level,” said 17-year-old Jad Kassab, of Waxhaw.

He was selected as one of the six delegates representing the Carolinas.

“Even when you do something as simple as go to bed, you have to make sure your blood sugars are at a normal level, so you can go to sleep and there’s a chance you might not even wake up by yourself,” he told Channel 9′s Madison Carter.

Kassab met with staff for North Carolina Senators Thom Tillis and Ted Budd after a hearing in front of the Senate Appropriations Committee Tuesday morning. Representatives from JDRF, including two child-delegates, testified there about what life is like with Type 1 diabetes and why more funding is needed to find a cure.

Tillis has signed on to a letter to Congressional leadership in support of continued funding for the SDP, while Budd has not.

Carter was there as the youth delegates pressed Budd’s staff for reasoning behind his hesitancy to sign the letter.

“I think it’s absolutely dumb that it costs $300 (for insulin) without insurance when most people probably can’t afford that,” 13-year-old Cooper Wheeler said.

Wheeler, of Rock Hill, South Carolina, was another delegate selected to attend Children’s Congress.

He met with representatives from his state Tuesday, as well.

The measure has not yet been slated for a vote, but it’s expected to go to the floor before funding runs out at the end of September.

VIDEO: Young lobbyists head to capitol to push for insulin affordability

Young lobbyists head to capitol to push for insulin affordability

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