Josie Edlefson and thousands of other Illinoisans will no longer have to ration her insulin after Gov. JB Pritzker signed a bill Friday that caps out-of-pocket insulin costs at $100 for a month’s supply.

“(Diabetes) doesn’t discriminate between those who can afford medication at unconscionable cost and those who cannot,” Pritzker said. “But that hasn’t stopped middlemen from sending prices skyward, forcing many insulin users to find their medication by substituting lower quality products or seeking options outside this country or even rationing their supply and some have died doing so.”

Chief sponsor of the bill, Sen. Andy Manar, D-Bunker Hill, met Edlefson last summer at the first press conference promoting Senate Bill 667 in Peoria.

When Edlefson, a 13-year-old from Manlius, was diagnosed with Type 1 diabetes about four years ago, she “quickly learned (she) did nothing to cause the disease.” She now needs insulin for about everything she eats and drinks.

“Even if you can’t afford it (insulin), you cannot just stop taking it,” Edlefson said. “Thanks to this bill, fewer Americans won’t have to make the choice to ration their insulin. No one should have to worry about paying for a necessary drug to live.”

The bill only covers people under Illinois regulated insurance programs. Manar said that was the maximum step the Illinois General Assembly could take under law and since private insurers are federally regulated, the rest is up to Congress.

Pritzker said 1.3 million Illinoisans are diabetic and have been affected by surging insulin prices that have nearly tripled in the first decade of this century. He added that out-of-pocket costs for a month’s supply average from $500-$900 with others exceeding that.

Megan Blair, a 27-year-old from Harristown, spends $1,800 for a month’s supply. She has been in and out of the hospital throughout her life and close to being in a diabetic coma more than once from not taking her medication because she couldn’t afford it.

“Going into debt because of a health condition that you cannot get rid of or that you did not choose to have is a very scary and lifelong battle,” Blair said.

She was diagnosed about 11 years ago and is still struggling to pay off debt that has accumulated from conserving her insulin.

 

Contact Kade Heather: kheather@sj-r.com, (217) 782-3095, twitter.com/kade_heather