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Inflation Reduction Act doesn't do enough for many who rely on insulin

Insulin needles

(Mitch Legan, WTIU/WFIU News)

The Inflation Reduction Act revived the ongoing national conversation around insulin prices. 

The $750 billion economic package creates a $35 insulin co-pay cap for people on Medicare. Biden has touted the package as a big win for Americans, but many Hoosiers who rely on insulin were disappointed by the final product. 

“This bill helps a minority of people, it does not help the majority of people with insulin needs,” Covington resident Molly King said. 

King is one of almost 800,000 Hoosiers living with diabetes.  

The 30-year-old special education teacher was diagnosed with Type 1 diabetes when she was 18, which means her body can’t create insulin. She’s spent every day since navigating her insulin regimen. 

Not all diabetics take insulin, but for those who do, the medicine is the difference between life and death. Insulin helps control their blood sugar, and without it, they could suffer serious medical problems including blindness, comas, or even death. 

“Anytime I eat food of any kind, I have to inject myself with insulin,” King said. 

King takes two forms of insulin to help control her blood sugar: one long-acting form she takes twice a day, and the short-acting form for when she eats. The type of insulin she takes hasn’t changed over the years, but the price of the medication certainly has. 

From 2010 to now, the price of her monthly insulin has skyrocketed from around $300 to over $1,000 a month. The financial burden became so much that she had to move back in with her parents just to afford her medication. 

Molly King prepares food before taking her insulin
“I knew financially, I couldn’t [afford it],” King said. “I would either have to choose to pay my bills or pay my rent or keep myself alive for another month.”

King’s story isn’t unique. The price of insulin has more than tripled in the past two decades; a one-month supply of Eli Lilly’s Humalog has jumped from $21 in 1996 to about $275 in 2019.

That’s why King had some hope when Inflation Reduction Act talks began. The initial version of the plan called for a similar, $35 co-pay cap for people also on private insurance. That would’ve been huge for her. 

But most Senate Republicans voted against the cap, including Indiana’s. 

Both Todd Young and Mike Braun declined interview requests for this story, but a spokesperson for Braun said in an email that the senator voted against the cap because it violated Senate budget rules. 

“Had that vote passed, it would have overruled the Senate parliamentarian and expanded the scope of the budget reconciliation process to allow for price controls on private companies,” the spokesperson said. 

The spokesperson said Braun would continue pushing his bipartisan bill to help expand access to low-cost, generic forms of medicines and stop pharmaceutical companies from stifling competition through “parking.” 

One of the ways brand-name pharmaceutical companies maintain control of the market is by agreeing to not sue a generic drug company if it agrees to delay production of the generic drug. 

Shaina Kasper, the policy manager for T1International, a nonprofit that advocates for affordable insulin access, said “parking” has become a major issue for all drugs, but particularly insulin affordability, especially considering three companies produce 90 percent of the global supply of insulin: Sanofi, Novo Nordisk and Indianapolis-based Eli Lilly. 

“They have this captive market, so they can charge whatever they want and rake in extraordinary profits,” Kasper said. 

The companies have said their prices are due the U.S.’ complicated medical landscape, and people generally don’t have to pay the full list price. 

In an emailed statement, an Eli Lilly spokesperson said the company was in favor of the private, $35 co-pay cap that failed in the Senate. They also said anyone can buy their monthly prescription of insulin for no more than $35 through its discount programs. 

“Our solutions have helped lower the average monthly out-of-pocket cost for Lilly insulin to $21.80, a 44 percent decline over the past five years,” the spokesperson said. 

For Kasper, a co-pay cap for private insurance would be another step in the right direction, but is still far from what her group is calling for: a true cap on insulin prices.  

She said while an expanded co-pay cap would help, uninsured people – who often need the most financial assistance – would still be left to pay full prices. 

“One out of four patients with diabetes has rationed insulin due to cost,” Kasper said. “And we think that number is probably even an undercount because a lot of folks don’t recognize that what they’re doing is rationing and medication.” 

King, the schoolteacher, knows the dangers of rationing insulin: years back, she experienced diabetic ketoacidosis after she tried to make her medicine last, and ended up in the hospital for a week. 

“I was completely unconscious,” she said. “I don’t remember like six days of my life.” 

And while discount programs such as Lilly’s are available, not everyone is able to access all of their benefits. 

Hena Shah, a nurse practitioner with IU Health Southern Indiana Physicians who works with diabetes patients, says she has seen patients get insulin from other countries at a cheaper price.  

“If you are not already established with a primary care provider, or if you’re not already seeing a diabetes specialist elsewhere, [discount programs are] difficult to access, because most people can’t navigate those resources on their own,” Shah said. 

King isn’t on a Lilly brand of insulin, and she’s exhausted the discount options available to her. So she’ll continue paying $1,000 a month for her medication. 

She’s happy to see Congress take some action on insulin prices but says it’s a long way from making a difference for most Hoosiers.  

“[We’re] being majorly penalized by our healthcare system because our bodies don’t make insulin,” King said. “We’re being charged this astronomical price simply for an organ not working.” 

The Associated Press contributed to this story.

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