People with type 1 diabetes are dependent on insulin — but it doesn’t follow that we should be dependent on corporate insulin manufacturers. We need a new model of insulin manufacturing, one that puts lives before profits.
Insulin and needles used for injection. (Spencer Platt / Getty Images)
Earlier this month, Eli Lilly agreed to significantly lower the price of its most common insulin products. Last week, Novo Nordisk followed suit and announced that it will be lowering prices on four of its most popular insulin products.
It’s positive news for many diabetics, and any development that grants easier access to insulin is cause for celebration. But we shouldn’t lose sight of the whole picture. Even the reduced prices are still prohibitive for some diabetics, and the products are still far more expensive than they are in other countries. Additionally, not all diabetics use the type of insulin suddenly put on sale. These remaining shortcomings reveal the fundamental problem: for-profit companies should not have ownership, and control the pricing, of this lifesaving drug.
The moves by Eli Lilly and Novo Nordisk are not spontaneous acts of willing generosity. They’re a concession to activists who’ve waged a yearslong campaign to publicize the truth about the United States’ insulin problem. The situation is so bad that diabetics have resorted to rationing insulin and buying it on the black market. Six states, most recently California, are suing the three drug companies that dominate the market over the illegal practices that overcharge patients for insulin. Meanwhile, the insulin cap provisions in the recent Inflation Reduction Act are barely a Band-Aid on the out-of-control problem.
Most people think that the high price of insulin is explained by research and development costs. This claim has been resoundingly debunked. The motivation for high prices is profit for the major pharmaceutical companies that manufacture the drug. Meanwhile, as reported in Jacobin, patient advocacy groups like the American Diabetes Association and JDRF are alarmingly compromised by their connection to profit-motivated companies, and representatives in government use our concerns as little more than a political football.
Thanks to the immense efforts of #insulin4all advocates, who are made up almost entirely of patients and their families, Eli Lilly and Novo Nordisk are taking some first steps to address the problem they caused. But the cold, painful reality for every insulin-dependent patient in the United States remains that for-profit companies still set the price of our lifesaving medicine. These companies have made no commitments and are ultimately unaccountable to the insulin-dependent community: if they can cap the price today, they can uncap it tomorrow.
I’ve lived with type 1 diabetes since 2012 and have been a vocal #insulin4all advocate since 2018, when I walked into a pharmacy in Mexico and discovered I could buy my exact insulin for 95 percent less than what I was being charged in the United States. (To wit: a Novolog Flexpen, newly reduced to $140 in the United States, will only set you back about $15 in Mexico. It’s the same stuff.) I am motivated not least by the knowledge that, if the circumstances of my life were only slightly different, I could very well find myself in the position to ration insulin, at grave risk to my own life.
No Way to Live
Rationing insulin really is a life-and-death gamble. In late summer 2021, my husband John got word that his old friend and fraternity brother from college was found dead, alone, in his apartment outside of Philadelphia. Like my husband, Troy was only forty-five years old. He had a sixteen-year-old son. His wife had died of a brain tumor twelve years before, when their son was only four.
Like many men in middle age, John and Troy had lost close contact in recent years despite having been close in college. When news of Troy’s death reached him without any specific details, John considered the worst, possibly a drug overdose. Troy had struggled with his mental health since losing his wife at such a young age. John traveled from our home in California to get together with some of the old college buddies back in Pennsylvania. That night, from the bar where he was gathering with the old crew, John called me. He told me that Troy had been diagnosed with type 1 diabetes just six months before, and hadn’t told anyone except his brother.
John went on to explain that Troy had struggled in silence while learning how to use our volatile hormone, insulin, a difficult learning curve as anyone with type 1 diabetes can attest. Then came the tragic conclusion. “Troy died rationing his insulin,” John informed me. “He ran out of his prescription. . . . the bill for his insulin at the pharmacy that he didn’t pick up was almost $4,000. And the last text message he sent to his brother was: ‘This is no way to live.’”
This is, indeed, no way to live. Insulin rationing means a slow, painful death for the insulin-dependent, as organs — overwhelmed by toxic high blood sugars — start to shut down one by one. This generally starts with the kidneys, and ends with the brain. Being without insulin for even a short period of time causes untold damage to the entire body.
If you are unlucky enough to be diagnosed with type 1 diabetes in the United States, you inevitably find yourself at the mercy of for-profit corporations. The misfortunes start to compound: bills pile up, and savings hemorrhage. And when you find yourself unable to pay nearly $4,000 to pick up a month’s worth of insulin — or simply sticker-shocked into paralysis — the shame of not being able to care for yourself burns like hell. Sometimes people are too afraid to ask for help. And sometimes there’s not even anyone to ask.
A New Model
Enter Project Insulin, a recently founded nonprofit pharmaceutical company that aims to fundraise the $50 million needed to start manufacturing a biosimilar, or generic insulin. Eric Moyal, its founder, does not have type 1 diabetes, but his girlfriend Gabriella Fleischman does.
“I saw it as a fundraising issue,” Moyal told me from Boston on a recent Zoom call. He felt that an organization not motivated by profit would be able to “raise enough money to develop the drug, and then not push that price on the patient. . . . whatever it costs us to make the vials that are going out to patients, that’s what we’re going to charge.”
“We’re not trying to do a scientific breakthrough. We’re trying to change the financial model,” said Fleischman, who sits on the board of Project Insulin and is a PhD candidate at Harvard’s Kennedy School of Public Policy. “The science is there. It’s open information. We can pay people to do it. Everything we need [to start manufacturing insulin] is there.”
What Project Insulin is doing is almost astonishingly simple. Sometimes its simplicity makes it hard for donors, who are used to funding start-ups aiming to disrupt industries with new moneymaking innovations, to see the proverbial forest for the trees. But Moyal, who approaches this project not just from a business standpoint but as a loving partner of someone with diabetes, is prepared to step up to the plate. “I think I’m the guy to raise $50 million,” he said. And if he succeeds, “there won’t be any pressure from shareholders to make as much money as humanly possible, which is unfortunately how it works with for-profit organizations.”
Project Insulin is encouraging us to expand our imagination for how we relate to medicine and its sources. For those of us with type 1 diabetes, insulin is more than personal. We inject it in order to live, we carry it with us everywhere, and we plan our lives around its availability and effects. We are genuinely insulin-dependent. But that doesn’t mean that we have to be dependent on for-profit corporations.
Being dependent on abusive corporate bullies is no way to live. We can change the funding and distribution model so that insulin is manufactured for our health, not for their profit. But first we have to allow ourselves to envision an alternative to the deadly status quo.