Insulin price-gouging kills
Posted on 03/29/24 by Kathryn Poe (they/them) in Health & Health Equity
Insulin is one of the best modern-day examples of just how broken the American health care system is and the consequences of that systemic failure for patients and families. Insulin is the primary treatment for diabetes, which has been diagnosed in nearly a million Ohio adults — about one in eight.[1] Although diabetes is eminently treatable, it is a leading cause of death in our state,[2] largely because insulin is too often unaffordable or otherwise inaccessible.
Federal and state governments have given pharmaceutical companies multiple opportunities to lower their prices. While some have taken action — including Eli Lilly after a single fake tweet[3] resulted in a $15-billion loss in 2022[4] — insulin is still out of reach for many.
Insulin affordability is a measurable crisis
In 2021, an estimated 38.4 million people in the U.S. were living with diabetes,[5] a disproportionate share of them Black or Asian. Most people living with diabetes rely on insulin to control their blood glucose levels. For too many, keeping up with their medication is financially devastating.
A 2022 study in Health Affairs found that among Americans who use insulin, 14.1% — almost 1.2 million Americans — reached catastrophic spending levels over the course of one year.[6] (Catastrophic health spending is the World Health Organization’s highest degree of financial hardship caused by out-of-pocket health expenses, defined in the Health Affairs study as “more than 40% of [a household’s] post subsistence family income” spent on insulin alone.[7])
The increasing cost of the medication[8] — especially since 2011 — has been driven by the three pharmaceutical companies that control the market: Eli Lilly, Novo Nordisk and Sanofi.[9]
Source: The Insulin Initiative (Click to expand.)
The federal government has the power to check the price of insulin, but thus far has not done nearly enough to help millions of Americans who rely on it. The Inflation Reduction Act capped out-of-pocket insulin costs for Medicare beneficiaries[10] — but 71% of adults who reported rationing medication were too young to qualify. According to a 2023 study, one in five U.S. adults under the age of 65 using insulin to treat diabetes reported rationing the medication because of cost.
While companies have lowered some costs through coupons and other programs, these policies have limits, cover only specific people, and can be incredibly difficult to navigate. They also leave room for insurance companies and pharmacy benefit managers to continue negotiating higher prices for their own benefit, rather than focusing on affordability for patients.[11]
The human impact of insulin price-gouging
Stephanie Ash’s brother Dylan died in 2016 because he did not have enough insulin. At a recent press conference, Stephanie told Dylan’s story and advocated for legislation to make insulin affordable for everyone:
Stephanie and Dylan Ash. Courtesy of Stephanie Ash.
In May 2016, my brother, Dylan Ash fell asleep in his apartment, slipped into a diabetic coma caused by a lack of insulin, and died. He was just 23 years old. Dylan struggled to afford insulin and diabetes supplies. He could not access the most effective therapies to manage his Type 1 diabetes because of the significant expense. Dylan would still be with us today if he had long-term support to access affordable insulin and the health care he needed. His death was preventable. His death was unnecessary. His death was not the last.
Dylan graduated from Baldwin Wallace University with a Bachelor of Arts in History in 2015 and was pursuing a Master of Arts in History at Cleveland State University at the time of his death. Dylan wanted to be a history teacher and educate our youth. He loved connecting to people and contributing his time and talent to our community. Growing up impoverished and as a first-generation college student, Dylan did not have a safety net to fall back on. Ohioans with diabetes need a safety net.
Dylan’s story is one of many that show the tragic impact of insulin price-gouging, but it wasn’t always this way. When insulin was first discovered, it was sold to the University of Toronto for $1.[12] And while the complexity and advancements of insulin drugs over the last 100 years is substantial, the cost of making the medication has not changed much. In fact, it only costs manufacturers an estimated $2-4 to make a vial of insulin – well below the hundreds of dollars that companies charge patients.[13]
States can stop insulin price-gouging
Insulin price-gouging puts many Ohioans in the impossible position of having to choose between feeding their families and accessing life-saving medication. States have a moral obligation and responsibility to protect their citizens from harm and to reduce or mitigate harm once it has taken place.
Drug companies risk Ohioans’ lives when they ratchet up prices. They have had many chances to do the right thing, and have consistently put their bottom line first. It’s time for the Ohio legislature to step in. Insulin saves lives. It should be affordable for everyone who needs it, regardless of age, income, or location.
Ohio legislators have options to improve access for people with diabetes:
- Pass legislation like HB 384 and SB 61 that will cap the cost of insulin and supplies for people in Ohio with health insurance.
- Pass an insulin affordability and safety net program like Minnesota’s,[14] which would provide people with access to insulin in emergency situations for $35.
- Ensure that people with diabetes have health insurance by expanding Medicaid to cover them regardless of pay, age, or type.
Additional Resources:
Hirsch, I. B. (2022). Insulin pricing in the USA: the saga continues. The Lancet Diabetes & Endocrinology, 10(10), 695. Can be found at: https://www.thelancet.com/journals/landia/article/PIIS2213-8587(22)00251-0/fulltext
The American Diabetes Association (ADA)(2023). PBM Polices and their impact on Drug and Device costs. Can be found at: https://diabetes.org/tools-resources/managing-diabetes-costs/pbm-policies-and-their-impact-drug-and-device-costs
T1International. https://www.t1international.com/
[1] Ohio Department of Health, “The Impact of Diabetes in Ohio,” 2022. We report the number of diagnoses, not the number of people with diabetes, because many people who have diabetes have not been diagnosed. The American Diabetes Association estimates 8.7 million people in the U.S. had undiagnosed diabetes in 2021.
[2] Same as above.
[3] Harwell, D. (2022). “A fake tweet sparked panic at Eli Lilly and may have cost Twitter millions.” The Washington Post, 2022, by Drew Harwell.
[4] “Insulin pricing in flux as major pharma players take action,” Pharmaceutical Technology, 2023, by Akosua Mireku and Irena Maragkou.
[5] Centers for Disease Control, National Diabetes Statistics Report, 2021.
[6] “Catastrophic Spending on Insulin In The United States, 2017–18,” Health Affairs, 2022, by Bakkila, B. F., Basu, S., & Lipska, K. J.
[8] “Expenditures and Prices of Antihyperglycemic Medications in the United States: 2002-2013.” Journal of the American Medical Association, 2016, by Hua X, Carvalho N, Tew M, Huang ES, Herman WH, Clarke P.
[9] “100 years of Insulin: Why is Insulin So Expensive and What Can be Done to Control Its Cost?” Endocrinology and metabolism clinics of North America, 2021, by Herman, W. H., & Kuo, S.
[10] U.S. Department of Health and Human Services, “Insulin Affordability and the Inflation Reduction Act,” 2023
[11] “The Price of Insulin: A Q&A with Kasia Lipska.” Yale School of Medicine, Serena Crawford, 2023.
[12] “100 years of Insulin: Why is Insulin So Expensive and What Can be Done to Control Its Cost?” Endocrinology and metabolism clinics of North America, 2021, by Herman, W. H., & Kuo, S.
[13] Same as above.
[14] Minnesota’s Insulin Safety Net Program (2023).