9 Investigates: Rising insulin costs force tough choices

CHARLOTTE — Choosing between life-saving medicine and a place to call home is a real situation that many people with diabetes are having to face.

People are being put in a bind because of the high price of insulin. One in four patients reported that they need to ration their insulin, and one in five say they’ve had to choose between food and medical supplies, according to the American Diabetes Association.

Channel 9′s Joe Bruno found out how the diabetic community is stepping up to take care of each other.

“He was a beautiful, young person,” said Jessica Lynn-Lato, describing her nephew, George Koons.

You could tell from pictures that Koons was full of life. Lynn-Lato says he loved the Pittsburgh Steelers and restoring classic cars.

Koons was diagnosed with type 1 diabetes when he was 12. He died of diabetic ketoacidosis, a condition that happens when there isn’t enough insulin in the body, at the age of 21.

“It was heartbreaking,” Lynn-Lato said. She later found Facebook posts that Koons had written two months before he died. He had written that he was facing a $250 charge for insulin at the pharmacy because he didn’t have insurance.

“No one should die because they can’t afford insulin,” Lynn-Lato said. “It’s obscene.”

Cost of living

A bottle of insulin costs about $10 to manufacture, but it can cost patients between $334 and $1,000, according to a report from the Kaiser Family Foundation. Last year’s Inflation Reduction Act capped the out-of-pocket insulin price at $35 for people enrolled in Medicare Part D, but Senate Republicans blocked an expansion of that cap to patients who are enrolled in private insurance after the Parliamentarian ruled it isn’t related to the budget.

The American Diabetes Association says 22 states have capped copayments on insulin, sevices, or diabetes supplies. But neither North Carolina nor South Carolina enacted caps.

With no help from lawmakers, some people with diabetes say the community is having to take care of each other.

“I have personally shipped insulin across the country for people,” said Lily Anderson, who has type 1 diabetes.

Anderson says when people need insulin but are potentially in between paychecks or just low on cash, they sometimes turn to social media. Channel 9 found plenty of posts from people asking for or offering this life-saving hormone. However, sharing or selling medications without a license is technically against the law.

For Anderson, it’s a personal mission. After losing her job and health insurance in 2017, not only could she not afford insulin anymore, she became homeless. It was the diabetic community that kept her going.

“Had I not had that community, I wouldn’t be here,” she said. “There is no doubt in my mind that the community kept me alive in that period of time.”

Anderson now has benefits that completely cover her diabetes supplies. Her focus is now pushing for insulin affordability.

“People are dying in their backyards because they can’t afford this,” she told Channel 9.

It’s the same mission that empowers Lynn-Lato.

“I made a promise to my niece, George’s sister, that I would continue to share his story,” Lynn-Lato said. “He should be here, he should be here with us.”

Lynn-Lato is a type 1 diabetic as well, and she’s encouraging everyone who experiences insulin challenges to speak up and seek help. She says she didn’t know about her nephew’s struggle until after he had passed away.

If you’re in need of assistance or have questions about diabetes, you can reach out to the American Diabetes Association’s North Carolina office at this link.

(VIDEO: Diabetes advocates frustrated after insulin cost cap is dropped from drug pricing bill)