Children urge Congress to renew funds for diabetes research

Children urge Congress to renew funds for diabetes research
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More than 160 children with type 1 diabetes made a personal plea for lawmakers to approve more funding to research the disease at a hearing Wednesday before the Senate Special Committee on Aging.

The children were dressed in blue shirts and Committee Chairwoman Susan CollinsSusan Margaret CollinsPoll: McConnell is most unpopular senator Hillicon Valley: Lawmakers struggle to understand Facebook's Libra project | EU hits Amazon with antitrust probe | New cybersecurity concerns over census | Robocall, election security bills head to House floor | Privacy questions over FaceApp Trump angry more Republicans haven't defended his tweets: report MORE (R-Maine) also sported a light blue jacket in solidarity.

“Your passion and hope for a cure are contagious,” Collins said. “I’m inspired by that sea of blue that is out there.”

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The hearing was the culmination of the JDRF's biennial Children's Congress, which brings children dealing with the disease, their family members and fellow advocates from all 50 states to Washington to raise awareness and push lawmakers to boost support for those with type 1 diabetes.

A nonprofit that funds type 1 diabetes research, JDRF has urged lawmakers to extend funding for the Special Diabetes Program. The program provides $150 million annually to the National Institutes of Health for type 1 diabetes research and expires this September.

At the hearing, Aaron Kowalski, the CEO of JDRF, said the bipartisan support for the Special Diabetes Program is “transforming lives and bringing us closer to our ultimate goal: cures for type 1 diabetes.” 

Dr. Griffin P. Rodgers, an official from the National Institutes of Health, said that the funding from the Special Diabetes Program has provided essential support for the development of breakthrough technologies in the field, including the artificial pancreas and cutting-edge blood glucose monitors. 

These advancements have changed the lives of people living with the condition, many of whom shared their experiences with the committee.

Emmy- and Tony-nominated actor Victor Garber told the senators that when he was diagnosed with the disease at age 11, he had to boil syringes to sterilize them and test his blood glucose levels with urine samples.

He said that the new technologies funded by the Special Diabetes Program had made managing the disease much easier today.

“Living with type 1 diabetes today is vastly different from when I was a teenager,” Garber said. 

The actor also called on lawmakers to address skyrocketing prices for insulin, an essential hormone for daily management of the condition.

“No mother in the U.S. should lose their son to insulin rationing, and no father should have to rely on buying insulin from Canada to keep his child alive,” said Garber. 

From 2012 to 2016, the price of the drug has nearly doubled leading some patients to ration or buy the drug in Canada where insulin prices can be 90 percent cheaper than in the US.    

Committee ranking member Bob CaseyRobert (Bob) Patrick CaseyDemocrats pledge to fight Trump detention policy during trip to border Democrats grill USDA official on relocation plans that gut research staff Trump's new labor chief alarms Democrats, unions MORE Jr. (D-Pa.) and Collins indicated that they are both working to solve high insulin prices.

Casey said lawmakers understood the difficulties posed by high insulin costs for patients. He said the high costs are “like a bag of rocks thrown on your shoulders every day.” 

And the lawmakers on the panel made it clear that the support for renewing the Special Diabetes Program was bipartisan and broad.

Sixty-eight senators from both sides of the aisle signed a letter authored by Collins and Sen. Jeanne ShaheenCynthia (Jeanne) Jeanne ShaheenPoll: McConnell is most unpopular senator How to reduce Europe's dependence on Russian energy Epstein charges show Congress must act to protect children from abuse MORE (D-N.H.) to Senate leadership in support of the program.

And lawmakers are acting. Last week, the Senate Health Committee approved a five-year extension of the program. 

The most impassioned pleas for extending funding, though, came from two of the children at the hearing

Ruby Anderson, 9, from Yarmouth, Maine, said she was diagnosed with type 1 diabetes when she was 3 years old and can’t remember what it is like to live without the condition. She was hopeful that more research could help find a cure. 

Ruby told the committee that when she grows up, she wants to be a scientist.

“If they haven’t found a cure for diabetes by then, I will,” she vowed.