The federal government should control the rising cost of insulin and continue paying for research into curing Type 1 diabetes, a Prior Lake teen with the disease recently told Minnesota’s members of Congress.
Anthony Martins, 17, was among four young people from Minnesota who joined the JDRF Children’s Congress, a biannual program to advocate for diabetes-related policies, in Washington, D.C., earlier this month. JDRF is a global diabetes research and advocacy group.
Delegations from every state and some other countries spent a day on Capitol Hill pushing for the five-year renewal of the federal Special Diabetes Program and other health research initiatives that provide tens of millions of dollars in research grants annually, Martins said.
“Their main goal is finding a cure,” he said, adding it was a fun and interesting experience to meet others like him and to sit down with the offices of senators Amy Klobuchar and Tina Smith and U.S. Rep. Angie Craig, all Minnesota Democrats.
JDRF is also pushing for a federal response to the price of insulin, a blood-sugar-controlling hormone essential to managing diabetes, by requiring that manufacturer rebates for the drug reach all patients, according to its website.
Insulin’s cost is several times higher than it was in 2002 and roughly doubled between 2012 and 2016 to an average $5,700 a year for an individual, according to studies in the medical journal JAMA and from the nonprofit Health Cost Care Institute.
KARE 11 reported last week that the family of 21-year-old Jesimya David Scherer-Radcliff in Ramsey said he died because he was rationing his insulin to save money. Others are doing the same around the country or trying to get more from Canada, Martins said.
Martins and his companions met a receptive audience. Smith in June introduced a bill to help people with no or little health insurance buy insulin, penalize manufacturers for major price increases and allow generic equivalents to go to market faster, for example.
“When it comes to policies that put real funding behind diabetes research, you can count on me to support them,” Smith said in a written statement Thursday.
Klobuchar pointed to insulin prices in her announcement of her presidential campaign early this year and called for allowing Medicare to negotiate cheaper prices, among other proposals.
And Craig supports Smith’s bill and Special Diabetes Program reauthorization and is a member of the Congressional Diabetes Caucus, which educates other legislators on the issue, a spokeswoman said in an email this week.
The disease disrupts the body’s ability to control its blood sugar levels, which can shoot up or down with meals, physical activity and other factors. The Minnesota Department of Health says different varieties of the disease affect more than 300,000 state residents.
If it’s not controlled, swerving blood sugar levels can lead to heart and kidney disease, vision loss and other chronic and severe health issues, according to the federal Centers for Disease Control and Prevention.
Martins and his sister, father and uncle have Type 1, which sets in early in life because the body can’t properly make its own insulin. Diabetes advocacy is literally and figuratively in their blood; they’ve been involved with JDRF and diabetes walks and other events for years, Martins said.
Last year, he met with former Rep. Jason Lewis and joined a panel at the Type One Nation Summit in Minneapolis to talk with kids about what having diabetes is like.
“I don’t know what normal feels like,” Martins said during an interview before a baseball game on July 12, a few minutes after giving himself an insulin injection. He plays for both Prior Lake Legion and Prior Lake High School.
If his blood sugar gets too high, he feels nauseous and thirsty; too low, and he’s dizzy and has a hard time moving. Though dealing with diabetes has become a kind of routine for the family, he was still shaken when his sister was diagnosed last year at age 18.
“It’s exhausting,” Martins said. But he appreciated the strides in diabetes research and technology — he uses a small blood-sugar monitor connected to his skin that sends information about his sugar levels to his phone.
He hopes even better and more user-friendly technology will arrive soon.
“That’s the next thing coming” once Congress renews the research grant program, Martins said.