Insulin affordability has been a major issue for the health of millions of Americans, even gaining attention during the Democratic debates. For patients living with diabetes, particularly Type 1 diabetes, access to insulin is literally a matter of life and death.
Although our collective attention has appropriately shifted to the overwhelming health crisis of the COVID-19 pandemic, as the 2020 presidential election approaches, it is essential that we refocus at least some attention to diabetes — a longer-standing, growing, unrelenting epidemic in the U.S.
Diabetes affects more than one out of 10 Americans and represents the seventh leading cause of death. Similar to COVID-19, there is no cure. Unlike COVID-19, there has been effective treatment available for a century. However, in our country, research suggests it is currently too expensive for a quarter of insulin-dependent diabetics to afford.
The medical and news media have reported stark evidence of the insulin cost-crisis — with stories of diabetes patients dying because they could not afford their insulin, rationing insulin supplies, and seeking out unvetted insulin products on Craigslist because they could not afford it otherwise.
Insulin prices have increased sharply over the past decade, making it unaffordable for many patients. Studies have shown that prior to the COVID pandemic, up to 25% of insulin-dependent diabetics rationed supplies to save money. The dramatic rise in unemployment and the loss of employer-sponsored health insurance due to the COVID-19 pandemic is likely to bring this crisis to a breaking point. This is particularly true in Pennsylvania, where unemployment rates hover around 13%, almost 700,000 residents are uninsured.
As of August, seven states have enacted legislation to cap out-of-pocket spending on insulin for those with commercial insurance. While the Pennsylvania legislature is not among them, a bill by State Rep. Jeanne McNeill (D., Lehigh) that would cap monthly costs at $100 has been introduced.
There are other necessary, if limited, measures that government officials at both the federal and state levels should take to address the specific needs of the uninsured, particularly those not financially eligible for Medicaid.
This year, President Donald Trump signed executive orders capping insulin copays at $35/month for Part D Medicare beneficiaries, who are 65 and older, disabled, or suffer end-stage renal disease and enrolled in Part A or B Medicare plans. Congress has introduced several proposals addressing the crisis, including the Affordable Insulin Act, which promotes the ability to purchase insulin at the Medicaid price, sponsored by Rep. Peter Welch (D., Vt.), and the Insulin Price Reduction Act from sponsor Sen. Jeanne Shaheen (D., N.H.) to incentivize drug manufacturers to lower prices. On his presidential platform, Joe Biden advocates for considerable action to limit unregulated price increases from pharmaceutical companies, as well as expanded access to high-quality generic medications. Importantly, he also defends legislation that will permit the Centers for Medicare and Medicaid Services to negotiate drug pricing with pharmaceutical companies.
These are important steps. But in the meantime, patients with diabetes still come to the emergency room in crisis. Hospitalists — including one of the authors of this piece — see many of them. We take care of these patients, stabilize their acute illness, and listen to their stories, their circumstances, the battles that they have lost with the health-care system. And we don’t have a clear solution. There are insulins available over-the-counter at lower cost than many prescription insulins. We provide instructions, dosing information, advice. But these insulins are not a long-term solution.
To level the playing field of health outcomes, we need policy that will dramatically shift the landscape of drug pricing and affordability. These issues have never been more crucial. We live in the wealthiest country in the world. No one should die because they cannot afford insulin.
As a nation, we have never been so aware of the fragility of human life, of the pain of lives cut short. Let us take this opportunity and this moment to commit to lasting changes through health reform that will protect our loved ones, friends, neighbors, and strangers in need. Let’s make insulin available to all who need it. There is a time to act, and it is now.
Jennifer N. Goldstein is an internist and associate professor of medicine at Sidney Kimmel Medical College at Jefferson University. Abby Donnelly is an undergraduate student at Georgetown University studying global health.