Local girl serves as advocate for decreased insulin costs at JDRF Children’s Congress

July 16, 2019 | 3:22 am

Updated July 16, 2019 | 12:20 am

Photo courtesy of Congressman Brett Guthrie

There were 1,200 children, aged 3-17, that applied from all across the country to participate at the 2019 Juvenile Diabetes Research Foundation (JDRF) Children’s Congress in Washington, D.C. This event allows selected delegates to represent their home state to advocate for continued funding of type 1 diabetes (T1D) research. Of the 1,200 applicants, Owensboro’s Macy Roberts was one of 160 delegates selected.

At only 11 years old, Roberts spent July 8-10 lobbying for continued research funding. She met and spoke with Kentucky’s most important political leaders and participated in a Congress Committee hearing where delegates shared personal testimonies highlighting the challenges of living with T1D.

Roberts is one of 1.6 million Americans suffering from this chronic autoimmune disease.

The disease differs from the more widely acknowledged type 2 diabetes (T2D) and remains a medical mystery. There is no cure for T1D, nor are there any preventative measures that can prevent it. Those who are diagnosed live, on average, shorter lifespans by 11 to 13 years.

For Macy and her father, Gavin, the chance to represent Kentucky and speak to U.S. political leaders about the continuation of JDRF funding — the world’s largest nonprofit funder of T1D research — was of the utmost importance.

“The Special Diabetes Program is a $150 million project that Congress passes every other year, specifically for research for type 1 diabetes,” Gavin said. “[However], there’s a lot of research that NIH (National Institutes of Health) and others want done, but that research would take longer than two years to complete.”

Gavin said U.S. leaders representing Kentucky have been pushing for longer research terms, but nothing has passed yet. The legislation has been written and voted out of committee, and leaders such as U.S. Congressman Brett Guthrie, representing Kentucky’s 2nd congressional district, and U.S. Senator Mitch McConnell, serving as Kentucky’s senior U.S. Senator and Senate Majority Leader, believe this legislation will pass.

Macy got the chance to meet with Guthrie and McConnell during the JDRF Children’s Congress, and Gavin said both leaders were extremely open to her advocacy for continued funding for T1D research.

JDRF performs research for other autoimmune diseases as well, including multiple sclerosis, lupus and Crohn’s disease. Once a cause and cure for T1D has been identified, researchers at JDRF will be able to better understand the way these other autoimmune diseases operate.

“These diseases come right along beside type 1 diabetes — they’re all connected,” Gavin said. “It’s all in the genetics. Research is done for these diseases when it’s done for JDRF.”

Guthrie said in a July 9 Facebook post, which included a photo of him speaking with Macy in his office during the Congress, that type 1 diabetics were facing another issue that needed major adjustment — high insulin prices.

“Thank you to the Roberts family from Owensboro for coming to my office today on behalf of JDRF. Insulin prices are simply too high,” he wrote. “As the top Republican on the House Energy and Commerce Committee’s Oversight and Investigations Subcommittee, I helped lead a series of hearings on how we can lower insulin prices.”

The issue of skyrocketing insulin prices hits a nerve for Gavin, as the issue led to the death of an Owensboro resident on June 5. A 28-year-old type 1 diabetic lost her life after she wasn’t able to obtain her insulin through insurance and couldn’t afford to pay out of pocket.

“She didn’t have her insulin for six days because of her insurance and she died of DKA (diabetic ketoacidosis),” Gavin said. “On May 28, Kayla’s grandparents told me they tried to get her prescription filled, but it wouldn’t go through for them. They didn’t get that prescription filled until June 6. She died on the 5th.”

Those with T1D cannot live without insulin, something Gavin feels a lot of people don’t quite understand.

“Most people just don’t understand the difference between type 1 and type 2,” he said. “You’ve got families with T1D children who are caravanning to Canada and bringing it back over the border because it costs $30 there. Something’s not right about that.”

The JDRF Children’s Congress served as a powerful opportunity for Macy and other type 1 diabetics to converse with others, including celebrities, who’ve overcome the obstacles associated with the disease, such as NASCAR driver Ryan Reed and Titanic actor Victor Garber.

“The research is so important for type 1 diabetes,” Gavin said. “Through the SDP program, they can put siblings of type 1 diabetics–siblings with a high risk of genetically developing T1D during their lifetimes–on a brand new medicine that prolongs the start of T1D for two years. This conference was an amazing experience and something Macy will never forget.”

July 16, 2019 | 3:22 am

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