The Insulin Dilemma: High Costs, Progress, and Disparities

Insulin was discovered in 1921 by Federick Banting, Charles Best, and colleagues, and they sold the patent for $1 USD each, which, adjusted for inflation in 2023, would be almost $17. It has been over 100 years of progress and pitfalls in insulin development since that initial discovery. One of these significant pitfalls is the cost to patients.

High costs for a 100-year old discovery

The cost of insulin has increased dramatically, both in the US and globally. Since the 1990s, the cost of analog insulin in the US has increased by over 1000 percent. A 2020 investigation of the average price of different forms of insulin (human, analog, rapid, rapid-intermediate, short, short-intermediate, intermediate, and long-acting) in 33 countries found that manufacturer price for all types of insulin averaged 5-to-10 times higher in the U.S. ($98.70 USD) than in other OECD countries ($8.81 on average), and that even net prices (which include rebates) in the US are still approximately four times higher than in other countries. The net result is that today, approximately half of the people with diabetes worldwide cannot afford the insulin they need.

Insulin is a necessary component of managing blood sugar for persons with diabetes. In the US, approximately 1.6 million adults live with type 1 diabetes, which is an autoimmune disorder in which individuals must take insulin multiple times a day to survive. In addition, nearly 1 in 5 people with type 2 diabetes, another form of diabetes that affects approximately 35 million US adults, use insulin as part of their medication management.

High out-of-pocket expenses and restricted access are associated with insulin rationing, which in turn can lead to clinical outcomes such as long-term complications, and premature death. It is also the leading cause of diabetic ketoacidosis hospital admissions. Even short episodes of high blood sugar increase the risk of microvascular complications, which include heart disease, kidney failure, blindness, nerve damage, lower limb amputations, and kidney disease. These poor clinical outcomes are especially pronounced in racial and ethnic minority groups, people with lower income and education, and in rural parts of the US.

When medicine becomes a financial burden, the cost is emotional health

Beyond these poor clinical outcomes, insulin rationing also negatively impacts mental and emotional health. People with type 1 diabetes sometimes describe their experience managing insulin needs as “walking a tightrope." One patient explained, “From the time I get up to the time I go to bed, and in the middle of the night when I'm asleep, I'm still walking it. It's day in and day out, there's no relief.” Similarly, another patient reported, “If I didn't have to worry about the cost of insulin, I would probably actually be able to sleep in peace at night.”

These specific stories echo broader trends in the population. Large studies have found that individuals who have difficulty paying bills experience more symptoms of depression and anxiety compared to those who did not have financial difficulty. Similarly, medical debt is independently associated with depression and anxiety.

Political action to cap insulin costs is a welcome start

In January 2023, President Biden signed the Inflation Reduction Act. A provision of this law capped insulin costs at $35 per month for Medicare Part D beneficiaries, and a similar cap will come online for Medicare Part B later this year. In the March 2023 State of the Union address, President Biden called on extending this $35 cap to all Americans.

A few days after that speech, pharmaceutical maker Eli Lilly kicked off a chain of corporate announcements capping their monthly out-of-pocket prices for their insulin brands, regardless of a person’s insurance. For Humalog, the company’s best-selling insulin brand, this resulted in a 70 percent reduction in cost. This was followed by similar announcements from other leading insulin manufacturers Novo Nordisk and Sanofi.

While these are commendable changes, especially in light of ongoing inflation, these cuts are not immediately effective and there is nothing preventing these companies from raising the prices of insulin in the future. Many have also criticized these moves as too late after decades of insulin price hikes and the resulting consequences. If prices can be cut now, what prevented such reductions during the 2018 recession when thousands of families needed financial assistance?

Psychopharmacology Essential Reads

Semaglutide (Ozempic) May Help Reduce Cannabis Use

Heart Damage and Brain Damage

Political pressure on insulin manufacturers has been building for decades, but 2023 has seen unprecedented activity in Congress on this issue. In March, the Insulin for All Act which would cap the list price of insulin at $20 per vial, regardless of insurance status, was introduced. Bill co-sponsor Cori Bush (MO-01) noted, “As a nurse, I’ve seen too many people in our communities struggle to afford their life-saving insulin medication. People are left choosing between insulin or groceries; insulin or rent; insulin or child care. This is unacceptable ... We cannot solely rely on the whims of pharmaceutical companies to set standards of patient care and determine who can afford medication.”

Remaining focused on eliminating disparities in insulin access

While policy efforts to address the cost of insulin are a recent development, existing community-based efforts have sought to address gaps in insulin access. One example of this is Mutual Aid Diabetes, an organization formed to address cost barriers to insulin in the US, both before and during the pandemic. This organization is run by volunteers who all have diabetes and provides financial assistance with diabetes supplies to anyone who requests help with diabetes-related costs, without means of testing.

These laudable efforts do not replace the need for addressing systemic challenges in the affordability of diabetes medications. Addressing these barriers will have ripple effects far beyond the clinical benefits of regulating blood sugar: It will help people live well—mentally and socially—with diabetes.

Finally, a PSA: If you or a loved one is insulin rationing, please contact either your doctor, a local health clinic, or mutual aid diabetes to get help.

This post was co-authored with Caitlan DeVries, MPH, the Project Coordinator for the Caswell Diabetes Institute Diabetes & Mental Health program, and a person who lives with type 1 diabetes.