Mutual Aid Diabetes, a mutual aid society, gets calls or emails every week from people struggling to afford insulin: people from across the country, employed or not, insured and not insured. The one thing they have in common is that they can’t afford insulin.
Zoe Witt, an advocate and volunteer with M.A.D., told ClearHealthCosts “there’s a lot of anxiety among community members right now, and as mass layoffs continue more and more folks will suddenly find themselves without insurance.”
Witt is not only a volunteer and diabetes activist. She is also one of the 8.4 million American diabetics that use insulin every day to keep them alive. Prices have soared over the past two decades and not everyone can afford enough.
The people who call Mutual Aid Diabetes are only a fraction of the people in the U.S. who are still having trouble affording their insulin.
It is well known that prices have been out of control for decades. And it’s not only people without insurance who struggle to afford it. But In 2023, it looked like things were starting to get better. Price caps on out-of-pocket costs for insulin made headlines. But the crisis is not over. Many diabetics struggle to get access to these cost-saving programs. And volunteer societies like M.A.D. are left to pick up the slack.
Rationing insulin to stay alive
Insulin rationing – deliberately taking less than one needs to postpone running out altogether – made headlines in 2018, after Alec Smith, a 26-year-old Minnesota man, died of diabetic ketoacidosis, one of the fatal complications of going without insulin.
The Right Care Alliance, a grassroots advocacy organization, reported that at least four people a year died rationing insulin between 2017 and 2019.
Zoe Witt, the advocate from Mutual Aid Diabetes, rationed insulin herself back in 2018.
“When I was uninsured, I made too much money to be on Medicaid but not enough to actually pay for health care premium [on the Obamacare marketplace] and then pay co-pays et cetera,” she said. “But I had relatively low insulin needs at the time. And so I basically just decided I would go uninsured and pay for insulin out of pocket.”
The costs eventually got too high. But there were no discount programs available for people in her situation.
“Back then, the coupons did not work for anyone that was uninsured. They only worked for people that have commercial insurance,” Witt said.
“All the time, people [would ask me] ‘why don’t you just use this coupon?” she said. “It doesn’t work for me. I’m not eligible.”
One study found that in 2022, four years after Witt was uninsured, 1.3 million adults resorted to rationing their supply to avoid running out, because of costs. It is not clear yet how that number may have changed since the Inflation Reduction Act price caps and other industry discounts went into effect.
To be sure, a number of people are paying less for their insulin today, thanks to some government policies that have just come into effect, most famously, the 2023 Inflation Reduction Act. But advocates say it’s not good enough, and are unnerved to see President Joe Biden taking one victory lap after another over this legislation.
So why can’t they get it? Why is it so expensive?
Before the advent of insulin therapy, getting diabetes was effectively a death sentence, with patients dying anywhere from a few days to a few years of symptom onset. The pioneers of insulin treatment in the 1920’s sold their patent to the University of Toronto for $1, hoping insulin could be easily mass-produced and distributed to the millions who needed it to survive.
“I’ve been diabetic since I was 19 months old. So I’m no stranger to this,” Ty Beringer, an activist in Arkansas, said in a phone interview. “Back in 1996, when I was diagnosed, things were certainly not this dire.”
Beringer is right. Insulin was still affordable through the 1990s. But by 2001, prices were going up rapidly. Taking advantage of the unique-in-the-world lack of transparency in the U.S. drug market, the three main manufacturers increased the prices by 159% between 2007 and 2018. By then, a single vial cost $480, up from $24 in 1996, the year Beringer was diagnosed.
Throughout this time, production costs for insulin barely rose at all.
“[Prices] not only rose steadily, but the primary competing insulin makers rose in lockstep,” Beringer said. “There were instances where they would raise [prices] by the same dollar amount on the same day. It was a clear example of market manipulation.”
Almost overnight, thousands of diabetics were unable to afford the medicine they needed to live. And as prices remained high, then climbed again and again, people had to choose between buying insulin and paying rent.
Over the same period, the number of Americans with insulin-dependent diabetes has only grown.
As people got poorer and sicker, the big three manufacturers went from being worth $7.3 billion in 2005 to $21 billion in 2016, all because of a decades-old drug that remained largely unchanged since it was first made 100 years ago.
The manufacturers, Eli Lilly, Novo Nordisk and Sanofi, all deny allegations of price-fixing, saying they are operating within the law and thus making profits legally. But all three companies have faced and are currently facing dozens of court battles – including RICO charges – in multiple U.S. state and federal courts.
What are the latest solutions and how/why do they fall short?
The continuing crisis and the fact that prices for insulin, a drug that had been on the market for over a century, were climbing when they should have been falling, captured the attention of the global humanitarian community. It prompted a damning report from the international organization, Human Rights Watch, which attributed the disaster to the “lack of regulation” in the United States.
“The high cost of insulin in the U.S.,” the 2022 report said, “is not just paid in dollars, but with health, lives, and livelihoods.”
President Biden’s Inflation Reduction Act was covered widely in the press and diabetes community: A provision of the law limited out-of-pocket insulin costs for people on Medicare. Since the provision took effect in 2023, Medicare enrollees pay a maximum copay of $35 a month for their insulin – a significant reduction.
Later that year, thanks in part to another law, the insulin manufacturers voluntarily reduced the prices for many of their insulin products. Experts say we have another Biden administration law to thank for that, 2021’s American Rescue Plan Act, which effectively financially penalized drugmakers for price-gouging. That took effect on January 1, 2024.
The Inflation Reduction Act has had some success. The government body that runs Medicare said the law has benefitted four million Medicare enrollees in the year since it first took effect. But advocates say that the I.R.A. and the manufacturers’ price reductions still leave out diabetics who aren’t on Medicare – mostly people under 65 – and that the manufacturers’ price cuts do not go far enough or deep enough.
And left out of the savings are people with insurance that doesn’t pay enough to cover the cost of insulin, leaving them on the hook to pay the difference every month.
There is not enough data available yet to know how many people can’t afford insulin today, but Witt said in a phone interview that last month Mutual Aid Diabetes got 20 requests for help paying for insulin as well as 34 requests for help paying for other diabetes costs like testing supplies, together totalling more than they had ever had in a single month.
What next and why it’s not enough
Several lawmakers are trying to pass a bill mandating an out-of-pocket price cap for even more people. ClearHealthCosts spoke with one of the sponsors of the Affordable Insulin Now Act, Rep. Susan Wild of Pennsylvania.
“It’s short and sweet,” Wild said in a phone interview. “The bill would cap the price of insulin at $35 a month for every American.”
Specifically, people with commercial insurance – those not on Medicare or Medicaid – could buy some insulin products and formulas for $35 a month or less. And for people without insurance, the bill also mandates cooperation between pharmacies and the Department of Health and Human Services to cover their costs.
With prices already lower than last year, we asked Rep. Wild why her bill is necessary and how it would help people.
“Because they could change [the prices] at any moment,” she said. “Happens all the time in all markets. Things are put ‘on sale’ all the time. It doesn’t mean the price is going to stay [low].
“It’s unfair to people who depend on a life-saving medication like insulin, to have to worry that the manufacturers are going to change their position, which they very well might when the pressure is taken off.”
Stopgaps, not a real solution
Other industry experts say that while proposals like the Affordable Insulin Now Act can help some people, they are mostly stopgaps that fail to address the true cause: the high prices set by the manufacturers themselves.
“This problem needs a holistic solution,” Ceci Connolly, the president and CEO of the Alliance of Community Health Plans said in a phone interview about drug prices. The alliance is a national trade organization in Washington, D.C., that represents nonprofit, community-based health plans.
“But we want to emphasize that, first and foremost, the problem with pharmaceuticals in the United States is the price, ” Connolly said. “So anytime that someone is talking about rebates, vouchers, discounts, group purchasing, even PBMs, to some extent. All of these are just Band-Aids on the true problem of exceedingly high prices. We always want to be certain that we are not masking the real problem here.”
The Affordable Insulin Now Act has bipartisan support in the Senate and the House, but even Rep. Wild said this is just a temporary solution for a deeply entrenched problem.
“As I am about that progress, it’s incremental progress,” she said. “It’s important [but] it doesn’t go far enough.
“We absolutely have to bring drug prices down generally, for all Americans, and insulin in particular,” Wild said.
