Insulin rights activists and those who live with diabetes are calling for meaningful action to address the high costs of insulin in the United States as a new study shows the widespread habit of rationing the life-saving medicine.
Diabetes is currently the seventh-leading cause of death in the US, though a 2017 study suggests the number of Americans dying from diabetes is much higher due to diabetes frequently being overlooked in causes of death. Humans require insulin, a hormone produced by the pancreas to regulate glucose in the blood, to live.
A study published on 18 October in the Annals of Internal Medicine by researchers at Harvard Medical School, the City University of New York’s Hunter College and Public Citizen, found that 1.3 million Americans rationed insulin due to the high costs of insulin in 2021. The staggering number represents an estimated 16.5% of the US population with diabetes.
The study found insulin rationing was most commonly reported by those without health insurance coverage and individuals under the age of 65 not eligible for Medicare. Black insulin users were more likely to report rationing insulin, at 23.2%.
Angela Lautner of Kentucky has lived with type 1 diabetes for 22 years.
“I’ve been on Eli Lilly’s Humalog insulin since 2000, nothing has changed in that vial, not how I use it, nothing has changed except for the price,” said Lautner. “The instant, the very instant, that I can’t afford insulin, death is literally staring me in the face and I would die within 24 hours or be in the emergency room on my way out without insulin, every single human would.”
One vial of Humalog cost $21 (£18) in 1999 and jumped to $332 (£287) in 2019. US list prices for insulin have soared in recent decades, while list prices have remained relatively the same at a fraction of US list prices in every other industrialized nation.
Living in Kentucky, Lautner has struggled to garner political support for addressing high insulin costs and expressed frustration with legislators not including the voices of those whose lives depend on it in developing legislation to solve the high cost issues.
“Insulin rationing, any person who is doing it is living a painful, horrible, non-productive life. Just imagine if someone was asking you to take one breath per minute and that’s all you’re allowed, because you can’t afford the $100 (£86) that you would have to fork out if you were allowed to have oxygen for the next 59 minutes. That’s insulin rationing. You’re withholding a vital hormone for life.” she said.
The impact of the practice can be terrible.
Janelle Lutgen of Dubuque county, Iowa, lost her 32-year-old son Jesse, a type 1 diabetic, after he started rationing his insulin because he lost his job and with it his health insurance and died in early 2018 from diabetic ketoacidosis.
Without health insurance, Lutgen said over-the-counter insulin costs more than $1,000 (£865) a month, and that her son couldn’t afford the high cost of healthcare coverage in the marketplace without a job and wasn’t eligible for Medicaid coverage because his income from when he was working was too high.
“It would probably be impossible to really know exactly all the harm that’s been done with high insulin prices,” said Lutgen, who explained that individuals who ration insulin because of the cost, if they do survive, can still experience other health impacts such as neuropathy, or losing toes or feet. “It seems like we can’t get it through legislators’ heads that we have to make sure everyone who needs insulin can get it, not just people who have insurance or people on Medicare – everybody. The only way to do that is to go to the root of the problem, big pharma.”
An estimated 1.4 million American adults ages 20 or older and 187,000 children under the age of 20 have been diagnosed with type 1 diabetes and require insulin to live. Individuals with type 2 diabetes, which accounts for 90% to 95% of all diabetes diagnoses, have varying needs of insulin injections as their bodies can still produce insulin while individuals with type 1 cannot produce insulin at all and require daily injections.
Stephanie Arceneaux of Utah was first diagnosed with type 1 diabetes at six years old, living with the disease for 34 years with her husband and son who also both have type 1 diabetes.
“I once added up all of the costs associated with having diabetes and it was about 40% of our income just to afford insulin, a way to test our blood sugar, the delivery method, all of that. It’s just not affordable for us,” said Arceneaux. “A lot of times we rely on donations to get us through. We just can’t afford it all.”
Even with health insurance coverage, insulin still costs her and her husband a few hundred dollars every month, and the burden of the high costs have gotten worse in the past two decades since she moved out of her parents’ home to live on her own.
“I had to cut back on things and make sacrifices my entire adult life,” said Arceneaux. “When you’re rationing, you are slowly killing yourself. When somebody is rationing, it’s simply because the pharmaceutical companies are putting their profits over patients’ lives.”
Arceneaux has often been forced to underdose her insulin, skip testing because she couldn’t afford test strips, and eat less frequently to try to reduce the number of insulin injections she needs.
“This is an issue of life and death and also an issue of quality of life,” added Arceneaux. “Imagine someone telling you that you can’t breathe. That’s what it feels like when you don’t have your insulin, when you know that you don’t have enough, that dread and panic you feel knowing that you might die because you can’t afford your insulin.”
