Why we should care about the cost of insulin

My life depends on insulin.

It makes it easier to live with my acute and chronic condition, insulin-dependent diabetes. Every three months I receive the insulation-lined box filled with ice packs and vials of insulin; I am deeply appreciative of my employer-based health insurance that largely covers the cost of medication that makes my life possible. But to be honest, since being diagnosed with type one diabetes in 1989, I had never really worried about the cost of insulin.

Until this year. The price of the drug has increased more than 600 percent in the last 20 years.

You may have read the newspaper, watched the news, or listened to the radio reports and learned that insulin is one of the most expensive liquids on the planet and that the Biden administration is committed to capping the price of insulin at $35 for a 30-day supply. You may have also seen the advocacy work of “Beyond Type 1” that declares: “Access to insulin is a human right!”

Yet, with all the attention to the price of insulin, the reality is that approximately 8.4 million people in the U.S. need to take insulin, which is just over one quarter of the 30 million people with diabetes (both Type 1 and Type 2) in the nation. With such a relatively small population of people affected, 2.5 percent of the U.S. population, why should we (collectively) care about the cost of insulin?

On the face of it, we should care about the cost of insulin because it is a cautionary tale of runaway big-pharma greed for profits. In May 1923, when Frederick Banting, Charles Best, and James Collip were awarded a U.S. patent for insulin, they each sold the patent to the University of Toronto for one Canadian dollar . The discoverers of insulin believed that the life-saving medicine “belongs to the world.” Today, 100 years later, the three pharmaceutical companies that now produce the global supply of insulin—Eli Lilly, Novo Nordisk and Sanofi—are being investigated for colluding with “pharmacy benefit managers” for fixing insulin prices and violating federal antitrust laws.

Putting a more human face on the situation, Robert Gabbay M.D., chief scientific and medical officer for the American Diabetes Association, highlights the precarious existence many people with diabetes live, saying, “People require insulin, it’s not an option, and nobody should have to decide between life-sustaining medication or food and rent.”

The “choices” required for living with diabetes, as well as the opportunities for corporate exploitation, do not end at insulin. A diabetic’s life is not simply dependent on insulin, but also the cost of blood glucose monitoring and insulin-delivering devices (i.e., disposable syringes or high-cost insulin pumps). And in this narrative of corporate greed, we could also point to the so-called “freemium marketing practice” that essentially requires, by way of limited insurance coverage, the use of specific “premium” blood glucose strips because companies give away for “free” or at low-cost proprietary blood glucose meters that require specific strips.

Life with diabetes is not only precarious for people in the U.S. Worldwide, the number of people with diabetes listed by Beyond Type 1 is 8.7 million people with T1D. The advocacy organization goes on to suggest that 3.9 million people would still be alive today if they had “had access to a timely diagnosis and sufficient ongoing care, medications, supplies, and diabetes management education.” Sadly, even these statistics may be read by some as showing a marginal number compared to the global population.

But what if there was another, even more disruptive story to tell? We should care about the cost of insulin because it is the result of a group of interrelated decisions that are causing an increasingly familiar kind of precarity for a seemingly small, but global, group of people. And everyone on the planet, regardless of who they are and where they are, is living at a time when life-essential substances like clean water, clean air and nutrient-rich foods are getting more and more expensive, and, despite appearances, harder and harder to come by. To uncover and understand that story, however, requires us all to pay more attention what is happening in the world that makes our lives more precarious, and what is being said and done by people in positions of authority and power.

Alongside news reports of the runaway cost of insulin, we see reports of dwindling supplies of chemotherapy and other essential medications, of depleted fresh water and ecosystem collapse, of peak production of both oil (as fossil fuels and for plastics) and phosphorus (for fertilizer and food production).

So, at a moment in time when global conditions create precarity for people everywhere, the specific features, causes, and severity of those perilous conditions are often quite different. The cost of insulin draws attention to other people’s struggle for existence. Too often, struggling to survive is isolating. Caring about the cost of insulin helps us connect to other people’s humanity, if not to the people themselves. Caring about the cost of insulin causes us to acknowledge our own humanity at a time of collective precarity and creates capacity in all of us to care about other issues like migration, gun violence, and gender-affirming health care.

David Swiencicki Martins is an associate professor in the Department of English at Rochester Institute of Technology. The Beacon welcomes comments and letters from readers who adhere to our comment policy including use of their full, real name. Submissions to the Letters page should be sent to [email protected].