Living with Type 1 diabetes is challenging enough with diet restrictions, constant checking of blood sugars, and additional health problems. Now one of the main stressors for diabetics is getting the thing they need most: insulin.
From 2014 to 2019, annual insulin prices have skyrocketed from an average of $3,819 to $5,917, according to the most recent study by the American Diabetes Association.
Jennifer Myers of Hickman was first diagnosed with Type 1 diabetes at age 2. Back then, her main struggle was with people who did not understand what diabetes was.
“When I was first diagnosed, I was pretty much treated like I had an infectious disease. Kids my age and parents did not understand,” Myers said.
But as she grew up and as diabetes became more prevalent within society, she said her main struggle was seeing the shift of her out-of-pocket payment dramatically increase.
“I went in July to get it [insulin], and the price I had to pay out of pocket was $702,” Myers said.
In recent years, the state has tried to stop the price of insulin from rising. Kameran Dostal testified in February of 2020 for a Nebraska insulin cap bill. Dostal was diagnosed with Type 1 diabetes at age 12.
“The bill was to create a price cap in Nebraska so that folks who need their insulin would be able to pay a flat rate for it and the price wouldn’t exceed that price cap,” Dostal said.
Sen. Kate Bolz of Lincoln introduced a bill that would cap out-of-pocket expenses at $100 for insulin.
During the hearing in 2020, Dostal told her own story of diabetes and talked about her experiences working with children at Camp Floyd Rodgers, a camp for children ages 8 to 18 with diabetes.
“I wanted to fight for their rights, too. I talked a lot about their experiences and their stories just as kids and kind of giving the perspective of living with diabetes as children because that’s a totally unique experience compared to adults,” Dostal said.
During the hearing, other state residents talked about their experiences rationing their insulin and the extremes they have had to go through to get it. However, the bill stalled.
“I think, ultimately at the very end, I felt really proud of the group that had gone there to tell their stories,” Dostal said.
Nebraska is not the only state trying to do something about insulin prices. Six states have already passed insulin cap bills that limit a 30-day supply to at or under $100. All of the bills started in early 2021.
Myers said she hopes that health professionals can find a cure in the future and that people will begin to understand what it’s like to have diabetes.
“It’s hard. A lot of people don’t understand the diet restrictions and people need to be a little more understanding,” Myers said.
Dostal said she hopes insulin prices can be affordable to everyone who needs it in the future.
“A person like me with Type 1 diabetes, I am completely dependent on insulin. If I don’t take it within 24 hours, I have the potential of dying. So for me, the price gouging issue of insulin is do or die, and I wish more people saw it that way,” Dostal said.