Drugmakers Promised Cheaper Insulin but Diabetics Can’t Find It

For 17 years, Kristen Whitney Daniels has been a Type 1 diabetic, needing regular doses of insulin to stay healthy. Having auto-immune disorders isn’t cheap: Whitney Daniels typically reaches her insurance’s annual $3,000 out-of-pocket maximum in about two months.

So when drugmaker Eli Lilly & Co. cut the list price this spring of its generic insulin, Lispro, to $25 a vial, the 32-year-old nonprofit executive from Shelton, Conn. set out to find it at area pharmacies.

One told Whitney Daniels it had no Lispro in stock. Another was selling it for $70 a vial, she said. A third refused to sell it to her without a prescription, even though she had one for Humalog, the branded and more expensive insulin from Eli Lilly.

Eight other diabetics described in interviews the same experience: None was able to find Lispro at the discounted price after it went into effect in May.

“Having that safety net of just paying $25 could be a matter of life or death for some folks,” said Whitney Daniels, who works with advocacy organizations for diabetics.

Their stories showcase the complex bureaucracy diabetics face to buy insulin and the market pressures that keep prices high and low-cost alternatives and generics out of reach. They also highlight the difficult task ahead for Congress—whether to simply cap how much people pay for insulin or to tackle the root issues that have driven up the cost of medicine.

Addressing the problem is critical: More than 37 million Americans have diabetes and more than 7 million need insulin daily, according to the Centers for Disease Control and Prevention. And the costs of insulin and related products have steadily increased in recent years, straining public programs and health plans.

The amount of insulin a diabetic needs each month varies based on a person’s size, diet, and the type of insulin they use, but Type 1 diabetics on average use between two to four vials per month, according to an analysis of spending from the American Diabetes Association.

Senate leaders have signaled they want to address insulin costs this year, but the path is complicated. There’s broad support to extend to private insurers Medicare’s $35-per-month cap on insulin costs; the proposal was three votes shy of becoming law last year. Some lawmakers now say more needs to be done to protect the uninsured and fix long-standing flaws in the insulin market.

Doing so could mean addressing the role pharmaceutical middlemen play in the price of insulin or simply demanding that drugmakers lower their prices.

“Manufacturers and insurers have taken steps to make insulin more affordable, but this is not enough to ensure no one has to sacrifice their rent or their groceries to afford the insulin they need to live,” Sen. Raphael Warnock (D-Ga.) said last month.

Warnock’s statement came as he and Sens. Elizabeth Warren (D-Mass.) and Richard Blumenthal (D-Conn.) released results from their own review of Lispro’s availability after Eli Lilly and two other drugmakers, Sanofi and Novo Nordisk, announced plans to cut insulin prices.

The senators’ survey of more than 300 pharmacies this spring found that almost half—43%— reported they didn’t have Lispro in stock. About 80% of those pharmacies said they had Humalog on hand.

Warnock and Sen. John Kennedy (R-La.) are pushing to cap what people with private insurance and the uninsured pay at $35 per month.

“If we’re going to do it, we ought to do it for everybody,” Kennedy said.

Another bipartisan duo, Sens. Susan Collins (R-Maine) and Jeannie Shaheen (D-N.H.), want to go further by capping out-of-pocket costs and limiting pharmaceutical benefit managers, which help design drug plans, from adding other obstacles to obtaining medicines where patient costs are capped.

The pair also want to require PBMs to pass along manufacturer discounts or rebates to health plans, a move meant to stop the market incentive for drugmakers to increase their list price and offer higher discounts to get better placement on the lists of available drugs.

“You have these companies that make less money on the inexpensive generic, which is outrageous because it would be beneficial to have it used more,” Collins said.

Bernie Sanders (I-Vt.), chairman of the Senate Health, Education, Labor and Pensions Committee, said he still favors a flat cap that would just prohibit insulin manufacturers from charging more than $20 per vial for any form of the drug.

Insulin advocates have come to the same conclusion after finding generic insulin more expensive and harder to find than advertised.

Staci Golar, who leads Idaho’s chapter of T1 International, an advocacy group for people dependent upon insulin, said she couldn’t find Lispro at pharmacies around Boise for $25 per vial in May. Golar previously helped people navigate manufacturer coupon programs and find mutual aid groups that offer discount medicines.

But “they’re not a solution—they only work for so long,” she said. “The solution should be to lower the cost.”

Drugmakers haven’t disputed that. David Ricks, the CEO of Eli Lilly, in 2019 announced his company would sell Lispro at half of the cost of Humalog, saying “it’s time for change in our system and for consumer prices to come down.”

However, players along the pipeline, like PBMs and pharmacies, contribute significantly to the price tag of insulin, Irl B. Hirsch, a professor at the University of Washington’s Medicine Diabetes Institute and a practicing endocrinologist, said.

“You can’t just point the finger at pharmaceutical companies,” he said.

What Americans pay for insulin varies based on their insurance coverage, but studies have found that the drug has become more of a financial burden in recent years.

About 14% of Americans who needed it in 2017 or 2018, more than a million people, reached what’s considered “catastrophic spending” on the drug: They spent 40% or more of their post-subsistence family income—what’s left after food and housing—on insulin alone, a 2022 study found.

Those facts, as well as attention from lawmakers and a 2021 law that changed certain drug rebates, propelled the three companies that make the bulk of insulin to pledge the price cuts this year.

That was welcome news to Lina Umubyeyi, a Washington, D.C. resident and Type 1 diabetic who said she’s lost insurance coverage a few times in her life.

“It gives me anxiety to this day to know that if I don’t have a job, I might not have the lifesaving medicine I need,” Umubyeyi said.

But in May she went to her local CVS pharmacy and asked for Lispro and was told she’d first need a new prescription from her endocrinologist.

Pharmacy chains and drugmakers say diabetics should be able to buy Lispro for $25 per vial and without needing a specific prescription. Having one for a similar brand like Humalog should be enough.

Matt Blanchette, a spokesman for CVS Health Corp., said it’s unclear why diabetics like Umubyeyi and Whitney Daniels were told they needed new prescriptions. He said pharmacies typically can get Lispro in one or two days once requested.

Part of the problem appears to be demand.

Eli Lilly produces insulin in response to demand, and gets about twice as many requests for Humalog as for Lispro, Kristiane Bello, a spokeswoman for the company, said in an email. About 50,000 prescriptions for Lispro are filled every week, Bello said in July.

Ultimately, Bello said, pharmacies and pharmaceutical wholesalers are responsible for deciding how much of the drugs to order and stock.

Clinicians typically order branded insulins because they’re more familiar with them, Robert Gabbay, the chief scientific and medical officer for the American Diabetes Association, which bills itself as the the global authority on diabetes, said. The non-branded generic insulins are often more expensive for diabetics with insurance coverage, he said.

“The price may or may not be better,” Gabbay said.

Health plans are commonly designed to favor branded products, where there are high rebates middlemen can collect, said Craig Burton, executive vice president of the Biosimilars Council, an arm of the trade group for generic drugmakers. His group recently reported that clinicians are increasingly prescribing generic insulins—known as biosimiliars—but that health plans are often designed to steer people right back to branded products.

“It’s all about the rebates,” he said.

PBMs have long argued they work for the benefit of patients, and that manufacturers’ list prices and use of patent protections to restrict generic competition are the main areas fueling high US drug costs.

President Joe Biden has repeatedly called on Congress to extend Medicare’s $35-per-month cap on insulin costs to the private sector, but lawmakers say that’s easier said than done as they wrestle with the politics around drug pricing.

Republicans supporting an insulin cap say they want any new federal spending offset with cuts to other government spending. “You can find $250 million in a $6 trillion budget,” Kennedy said.

Senate Democratic leaders have signaled they may pair an insulin with other drug-pricing bills to offset the cost. Supporters of the cap say right now they’re trying to figure out what bill or combination of bills can garner 60 votes in the US Senate.

“The discussion now is how to get the votes to get it done,” Shaheen said.

To contact the reporter on this story: Alex Ruoff in Washington at [email protected]

To contact the editors responsible for this story: John P. Martin at [email protected]; Robin Meszoly at [email protected]

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