As Biden makes his case for reelection, the cost of insulin takes center stage

Biden’s policy, she said on a recent afternoon, was a “godsend” because it enshrines into law that Americans on Medicare, the federal health insurance program that covers people older than 65 and some younger ones with certain disabilities, will not spend more than $35 per month on insulin.

As Biden makes his case for reelection, he regularly cites the cap on out-of-pocket costs for insulin on TikTok, in campaign advertisements and in speeches around the country. He sees the law as a crucial part of his record heading into the 2024 election, with bipartisan support and particular resonance for Americans with diabetes, one of the most common chronic diseases in America.

It also mirrors something of a generation gap in Biden’s base of support. Recent polling shows that voters older than 65, who usually vote Republican, are emerging as reliable supporters of Biden.

Younger voters, however, are showing signs of dissatisfaction. And some of those voters say they are still hoping for the reassurance of having the $35 limit written into law for them.

“Biden is doing better with older voters than he anticipated, and I think his Medicare policies are an important part of that,” said Geoff Garin, a pollster for the Biden campaign. But he acknowledged that among younger voters, “there’s some frustration with them that change is not happening quickly enough.”

The Inflation Reduction Act, the 2022 legislation that contains the insulin measure, originally capped the price of insulin for everyone with health insurance. But Republican holdouts in the Senate demanded that it only apply to older adults.

The split shows the challenge Biden faces as he tries to take credit for hard-fought and often transformative policy wins — while acknowledging that his initial promises, in some cases, had to be scaled down.

Peterson worries about younger people at risk of losing their parents’ insurance and those navigating different state health insurance policies. Diabetics can develop fatal complications if they skip or ration their insulin injections.

“It’s scary,” said Peterson, who has a niece and two nephews in their 20s who have diabetes. “How many have to die until we get insulin and inhalers for everybody?”

Even without the protections being written into law for everyone, the price of insulin has dropped for the vast majority of people, including younger people on commercial insurance. Employers and government health insurance programs cover most of the cost of prescription drugs. Patients typically face out-of-pocket costs at the pharmacy counter.

Still, even insured patients pay more than $35 for insulin 20% of the time, according to the IQVIA Institute for Human Data Science, an industry data provider.

Kyhla Desire, a 28-year-old graduate student in Boston, said her state health insurance policy in Massachusetts covers most of her insulin costs. But expanding the cap to more people would still help her, she said, because it would allow her to move around the country with the reassurance that the insulin she needs will always be affordable.

A Type 1 diabetic, Desire said she was out of state in 2015 and needed to quickly refill her prescription — only to find that it would cost about $1,000.

Nervous about asking her parents for help, she instead rationed her insulin and ended up having diabetic ketoacidosis, a life-threatening condition that develops when the body cannot produce enough insulin.

“The policies around insulin need to be reshaped and remade,” Desire said.

Biden has made clear that he believes the cap on out-of-pocket costs for insulin should apply to all Americans, calling on Congress to help him “finish the job.”

“When I first wrote it, it included everybody,” he went on, noting that Republicans narrowed the eligibility. He added, “Everybody left the seniors in. They couldn’t lose that one.”

Researchers estimate that 1.5 million people with Medicare will benefit from the price cap, according to the Department of Health and Human Services. The legislation also limits the out-of-pocket costs for all prescription medications for older voters to $2,000 per year by 2025.

After Biden signed the Inflation Reduction Act, the three leading insulin manufacturers in the United States agreed to cap the price of insulin at $35 for those on private insurance, extending the benefit beyond Medicare recipients.

State governments have followed up on the federal legislation to lower patient costs for insulin as well. And while some insulin companies are still struggling with supply chain shortages, accessibility to insulin has improved, particularly among older Americans.

But there are still those who may face difficulties with out-of-pocket payments, including the uninsured and people on certain high-deductible insurance plans. Among adults who reported rationing insulin, more than 70% were estimated to be younger than 65, according to 2022 National Health Interview Survey data from the National Library of Medicine.

“It’s those that are falling between the cracks of our health care system who can’t afford the insurance through the marketplace,” said Nicole Smith-Holt, an advocate for lowering the cost of prescription drugs whose son died at 26 after rationing his insulin to the very last drop.

Despite Biden’s promotion of the insulin cap, it is far from clear whether it will have an effect on the election. Only about one-quarter of Americans know of the policy achievement, according to a December poll by KFF, formerly known as the Kaiser Family Foundation.

Even many voters older than 65 were not familiar with the measure, the poll found.

But Biden campaign officials look to the state of Georgia as an example of how powerful the issue can be. During the 2022 Georgia runoff won by Sen. Raphael Warnock, he focused his ads, debates and speeches on capping the cost of insulin. Warnock said the issue can be a way to galvanize voters of color — Black people are disproportionally likely to ration insulin — as well as to energize a broader coalition.

“It’s an equity issue, a justice issue and a people issue,” Warnock said.

For James Martin, a 37-year-old father of three, the issue is beyond politics. Martin is now paying $35 for insulin after drugmaker Eli Lilly aligned its price with the provision in the Inflation Reduction Act last year.

Before then, when he struggled to pay for insurance, he said he needed to choose between “a roof over my kid’s head or pay for my medicine.”

He, too, rationed his insulin on one occasion and landed in the intensive care unit.

“I remember hearing my own flatline,” Martin said. “A lot of people say when you die, your life flashes before your eyes. What I had seen was my kids growing up without me.”

Martin is not sure Biden’s policy will be enough to win his vote. But he did say Biden had won his respect.

“You don’t know how many lives you’re saving,” Martin said. “I would shake his hand and say, ‘Thanks.’”

This article originally appeared in The New York Times.