T1International, an advocacy group for type 1 diabetics, is calling on pharmaceutical companies like Eli Lilly to lower their insulin prices. The group has been pushing these efforts in Indianapolis for several years.
Noah Reif is T1International’s advocacy manager and a type 1 diabetic.
“T1International advocates have gathered in Indinaapolis and protested at Eli Lilly for many years, yet in 2022, there are people living with diabetes who are forced to ration their insulin and they risk their health,” she said.
Reif said the group will have to continue advocating until there is “not one more” person who must rationalize their insulin as a result of prices.
Sarah Skipper is also a type 1 diabetic. She said advocacy is the only way this group can get their message across.
“Your voice can move mountains, but you have to open your mouth in order for them to move,” Skipper said.
Eli Lilly’s version of short-acting insulin, Humalog, was put on the market in 1996. Slowly, prices went up, eventually building to nearly $275 per vial to cost in 2019. The company eventually created a generic version of the drug, Insulin Lispro, which lowered the cost to about $137 per vial. An announcement in 2021 lowered the list price of the Insulin Lispro to about $82 for individual vials and about $159 for a pack of five pens.
Advocates with T1International said lowering these prices is still not enough. Dr. AJ Sinha is a physician in Indianapolis. He said these moves are for publicity and do not address underlying issues.
“Big pharma can offer patient assistance programs and the federal governments can offer a co-payment cap for the minority of people on government health insurance,” Sinha said. “But these are all half measures and public relations gambits. And they do nothing to address the structural problem of the high cost of insulin.”
Other barriers also exist with these cost reductions from Lilly. With the company offering two versions of the same drug, health experts wondered why anyone would pay the higher price for the same medication. Experts suggest middlemen,such as insurers and pharmacy benefit managers, will typically get higher rebates for paying the full price for the brand-name drug.
These insulin price reductions also leave out long-lasting insulin. Type 1 diabetes patients use either long-lasting or short-acting versions of the drug – the latter does not have a lower-cost alternative.
Janelle Lutgin lost her son in 2018 due to rationing insulin. She said those with diabetes need to be able to have the same rights as those without.
“For the 1.3 million Americans who ration insulin – where is there justice?” she asked. “Where is the American dream?”
In an email, a Lilly spokesperson said the company is “committed to making insulin affordable for all people living with diabetes.”
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President Joe Biden’s Inflation Reduction Act also puts a $35 cap on insulin prices for seniors on Medicare. However, it leaves out those Americans who are uninsured or on private health insurance.
Nicole Smith-Holt lost her son to insulin rationing a few years ago. She said those that are underinsured or underrepresented and those that are part of Black, Indigenous or other communities of color sometimes suffer more.
“This tragedy is not felt equitably as the uninsured and underinsured middle class, BIPOC communities are at most risk,” she said.
Eli Lilly offers a diabetes solution center for those struggling to afford their insulin. However, many T1International advocates said this does not go far enough.
CORRECTION: A previous version of this story's audio used incorrect pronouns. It has been updated.
Contact reporter Violet at vcomberwilen@wfyi.org or follow her on Twitter at @ComberWilen.