Danelle Johnson has considered leaving the state because it doesn’t have a law that caps co-pays for insulin, and the drug costs are just too high.
“I’m North Dakota through and through, but keeping my daughter alive is more important,” Johnson said.
Her 18-year-old daughter Danika has had Type 1 diabetes for about five and a half years. Managing it requires regular administration of insulin to stay alive.
“When I was first diagnosed, I would give daily injections, so six to eight a day, anytime I ate, or my blood sugar would get high. Now about four years ago I moved to an insulin pump so it drips in all day,” Danika said.
Out-of-pocket expenses for insulin in America have skyrocketed in recent years, prompting Senate Bill 2183, which would cap monthly co-payments at just $25.
Bill sponsor Sen. Dick Dever says the advocates for affordable insulin have motivated him the most.
“The bill did not come from a lobbyist, did not come from a national organization, it came from mothers who are struggling to help their children,” Dever said.
It’s not the first time Danika has advocated for the issue. In 2019 she represented North Dakota in the Juvenile Diabetes Research Foundation Children’s Congress — getting to meet with federal delegates to share her concerns.
“It was really interesting to talk to them. They saw a whole new side of diabetes in general, just being able to put diabetes to a face and to human lives,” Danika said.
Kasey Carlin from West Fargo can understand — her 10-year-old daughter Regan has had Type 1 diabetes since she was three, and the monthly costs make it hard to manage.
“Every time I went to fill a prescription, it would be $20 more than the last time. That doesn’t seem like a big deal, but you’re going in expecting to pay 150, then it’s 170, then it’s 190, it’s hard to budget for that,” Carlin said.
Carlin says with insurance, she meets the out-of-pocket limits for the year in January, paying upwards of $1,000 that month, then $200 to $300 every month after.
“We have to plan for every January a great big hit to the pocketbook, and be ready to pay for our supplies,” Carlin said.
Carlin says the bill would give her family more financial stability, and her daughter more freedom in the future.
“When she grows up and becomes an adult, her decisions, what kind of job she can get, is going to depend on what kind of insurance she can get, and not necessarily what job she wants because she’s going to need to be able to afford insulin to live, so I hope we can get something to change before she’s an adult,” Carlin said.
There was not yet a vote on a bill, but Danelle and her daughter say they plan to continue providing testimony as it moves forward.