Millions of Americans in insulin deserts worry that recent price reductions could one day disappear

Charlene Davis sleeps on her living room floor in Atlanta to help ease her back pain and make it easier to access a drawer full of drugs to help keep her alive.

Over the past few years, doctors amputated fingers from her left hand and implanted a heart monitor. Davis said it’s all connected to a chronic disease she’s had since 2008: type 2 diabetes.

The 58-year-old said managing her insulin and other medications takes hours a day.

“It’s a second job trying to move the medicine, make sure I have a prescription, make sure I have refills,” she said.

Davis has insurance but relies on manufacturer coupons to afford her insulin at $35 a month to manage her diabetes. Davis estimates her insulin would cost about $500 a month without the discount.

Davis worries each day the pharmaceutical companies could rescind their discounts at any time. “It would be hard,” she said. “We don’t have a lot now, but we really wouldn’t have anything at that point.”

A survey conducted by the Yale Diabetes Center in 2017 found one in four people reported rationing their insulin due to financial reasons. Davis hasn’t needed to ration insulin yet but reuses needles to save money.

Congress recently capped the cost of insulin at $35 a month for seniors on Medicare, but it doesn’t cover diabetics like Davis, who has private insurance.

According to a bipartisan U.S. Senate report released earlier this year, Davis is one of millions of Americans who live in or around insulin deserts across the country. The report identified 813 of these deserts, which the report defines as counties with high rates of diabetes and the uninsured.

The majority of the deserts are concentrated in the southeast. In Georgia, there are more than 100.

U.S. Sens. Raphael Warnock of Georgia and John Neely Kennedy (R-Louisiana) produced the report and co-sponsored the Affordable Insulin Now Act of 2023, legislation that would cap the price of insulin for everyone at $35 a month.

On the Senate floor this past November, Warnock shared a story about a constituent with diabetes who bought insulin from strangers she met on Facebook groups, meeting up at Chick-fil-A restaurants at night.

“These are the kind of stories I’ve heard in my state and across the country and I’m glad that we’re on the path to doing something about it,” Warnock said in an exclusive interview.

Lacy McGee is the constituent Warnock mentioned on the Senate floor. She attended the 2023 State of the Union address as Warnock’s guest to raise awareness about insulin price disparities.

McGee can now afford the medication thanks to her husband’s insurance, but said: “There’s still a big gap for people that are between jobs or don’t have insurance and a deadly gap in many cases.”

The largest insulin manufacturers - Sanofi, Eli Lilly and Novo Nordisk - recently reduced the cost of insulin, but it’s a voluntary move. Warnock wants that price cap the law of the land, and believes he can get the legislation ed the finish line. It failed to in the Senate by just three votes last year. “I’m seeing hopeful signs,” Warnock said. “I’m under no false pretenses that any of this is easy.”

In a Congress seemingly perpetually gridlocked, Davis hopes lawmakers can prioritize what’s important for some of their most vulnerable constituents. “You need to think about the little people and how it affects them and the impact that it has not only on their pockets but on their health,” she said.

We reached out to the nation’s top three insulin manufacturers for comment on this issue. Here are their responses:

Sanofi

The company did not specifically respond to the proposed legislation but provided a statement reiterating its commitment to cutting insulin prices. “Sanofi believes insulin should be affordable for all patients, which is why we have a suite of industry-leading programs to ensure no patient has to pay more than $35 for their Sanofi insulin,” said a spokesperson. Learn more about the company’s discount program.

Novo Nordisk

The company said it is “aware of the [Affordable Insulin Now Act of 2023] legislation and currently reviewing it,” a company spokesperson said. “We recognize that not all patient situations are the same and we have a number of different insulin affordability offerings available through NovoCare.” Learn more about the company’s discount program.

Eli Lilly

The company did not respond to requests for comment about the pending legislation but issued a press release in March 2023 about its voluntary decision to cap its costs at $35 a month. “We are driving for change in repricing older insulins, but we know that 7 out of 10 Americans don’t use Lilly insulin,” said David A. Ricks, chair and CEO. “We are calling on policymakers, employers and others to us in making insulin more affordable.” Learn more about the company’s discount program.

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