Insulin is, by at least one calculation, the sixth most expensive liquid in the world, whereas my water bill is so nominal it’s included with the price of rent. The drug is so expensive that out of 7.4 million Americans using insulin, only about 5.5 million can actually afford it. It wasn’t supposed to be that way: Frederick Banting, the co-discoverer of insulin, was said to have proclaimed, “Insulin does not belong to me, it belongs to the world.” He then sold the patent to the University of Toronto for a single dollar in hopes that everyone would have access to this lifesaving medication if they needed it. The years since have, unfortunately, been unkind to insulin-dependent people. That’s been especially true in the United States, where the conjunction of lack of market competition and consistent demand has led the prices of some insulins to spike to more than 50 times the cost of production over recent years, even as the product has remained the same.
Those rising costs have notoriously caused people who use insulin to skip rent and bills to meet their insurmountable co-pays. Although insulin inaccessibility has caused death and increased the risk of health complications for people with diabetes for decades, a number of highly publicized deaths of rationing victims has turned the spotlight on the issue in the past few years. Alec Smith, 26, died as a result of apparently rationing insulin in 2017 after aging off his parent’s health insurance. With an annual income of about $35,000, Smith was above the income bracket for Medicare but still unable to afford a marketplace plan. Because the retail prices for insulin and diabetes supplies are so high, it appears he was forced to ration insulin and eventually succumbed to diabetic ketoacidosis. I understand his situation all too well, having found myself in a similarly precarious position when I turned 26 last December. Only after I lost my job — and my income with it — during the pandemic was I able to qualify for the New York’s state Essential Plan that helped me afford a drug that I’ve needed since I was 12.
Trump presumably had such situations in mind in his garbled reference to the drug “destroying families, destroying people.” The trouble is that the supposed solutions he alluded to haven’t done much for those of us who need help. It’s true that he has signed a series of executive orders allegedly designed to make insulin more affordable. Except that’s not what they’ve done. The first order directed the Department of Health and Human Services to make lifesaving drugs such as insulin available to low-income patients through Federally Qualified Health Centers at the lowest price. But this program already exists; it’s called 340B, and though it works for some people, FQHCs that support the 340B program can be difficult to find and access, especially in rural areas. In other words, it only helped some people with diabetes.
The second order would allow states to import drugs from Canada at a lower price, potentially creating lower-cost options but without actually fixing the problem. Plenty of people already travel to Canada to purchase their insulin, so in reality this would mostly create more bureaucratic hoops to jump through and potentially a larger chance that the insulin — which is sensitive to high temperatures — would spoil in transit. The third order called for the elimination of rebates to pharmacy benefit managers in the Medicare program. This could be promising as a first step to eliminating the needless position of PBMs that certainly contributes to the increased cost of insulin in the United States, but only 14 percent of the country is enrolled in Medicare.
The fourth order remains unclear but would apparently require the United States to pay the lowest price available for medications as exemplified by other countries. Similar legislation has been proposed, particularly HR3, which would mandate that HHS negotiates drug prices of no more than 120 percent of the average price some other countries pay. A law like this would also be an interesting step toward drug affordability, but pharma executives immediately declined a meeting to discuss the mysterious fourth order, so any progress on this aspect is unrealistic. And even if there’s movement on that front, none of this has yet come to pass, which gives the lie to Trump’s suggestion that he’s “getting it for so cheap.” Plus, the HHS secretary, Alex Azar, served as a senior official with Eli Lilly, so any negotiations that don’t protect the interests of pharma seem unlikely. There’s certainly no reason at this juncture to believe, as Trump claimed during the debate, that “drug prices will be coming down 80 or 90 percent.”
In addition to the executive orders, Trump recently introduced a $35 co-pay price cap on insulin, but only for seniors enrolled in Medicare. Even coupled with recent legislation introducing statewide insulin co-pay price caps in seven states, this move will help only a fraction of Americans with diabetes. While the executive orders and the co-pay price caps are at least a small step in the right direction, they are performative at best, but what more could we expect from a president who inquired about whether he should start using insulin just for fun?
With the impending general election, the Trump administration has done everything to make it look like it cares about the insulin crisis while still managing to do almost nothing to help people who are dying here and now. As insulin accessibility nonprofit T1International states, “We don’t need incremental bureaucratic steps as an election approaches — we need transformative change that will make our medicine more affordable now.”
The insulin crisis in America is very real, and it is painful for insulin accessibility advocates to watch this administration propose empty solutions, making a mockery of the plight of Americans who use insulin. Trump tried to argue during the debate that his recent actions on health care aren’t “symbolic.” But for most of us, his handling of the insulin crisis is worse than symbolic. It’s meaningless.