Price gouging and other barriers to accessing insulin are symptomatic of a broken healthcare system, and demonstrate the need of systemic reforms, diabetes advocates argue

Jada Renee Louis of Newport News, Virginia, died on 22 June 2019 about a week after requiring emergency hospital care for diabetic ketoacidosis, a serious complication caused by a lack of insulin, and a foot ulcer. She was 24. A type 1 diabetic, Louis, who did not have health insurance coverage, couldn’t afford the cost of her insulin doses and pay her rent. She chose to skip doses in order to pay her rent.

In 1922 Frederick Banting and Charles Best, the Canadian scientists who discovered insulin, sold their patent to the University of Toronto for $1, hoping it would be a cure for diabetes. Today a vial of insulin – which will last 28 days once opened – costs about $300 in the US.

Black, Hispanic and Asian adults have been hit hardest by escalating prices. They are more likely to have diabetes than white adults and are less likely to be insured. One in four diabetes patients ration their insulin, according to a study published in the Journal of the American Medical Association.

“People are literally dying over $300 like my sister did. It shouldn’t have to be like that. People shouldn’t have to choose between medications or shelter. That’s the most outrageous decision for somebody to have to make, yet people are doing it daily,” Jazmine Baldwin, Louis’s sister, told the Guardian.

“She was a wonderful person and now people don’t get to experience that any more. There’s no telling what she could have done, how many lives she could have touched, and now no one will know because of a $300 insulin bill.” Her family is still struggling to cover the funeral expenses, and have set up a GoFundMe for support.

Facebook Twitter Pinterest Jada Renee Louis died on 22 June 2019 at age 24 after a complication caused by a lack of insulin. Photograph: Courtesy Jazmine Baldwin

Price gouging of insulin and other barriers to accessing it are symptomatic of America’s broken healthcare system, diabetes advocates argue, and the resulting deaths and struggles of those with diabetes demonstrate the need for systemic reforms.

“There is a lot of monopoly power, asymmetry of knowledge and power, and as a result you have sky-high prices across American healthcare, in particular the pharmaceutical sector,” said Dr Vikas Saini, president of the Lown Institute and co-chair of Right Care Alliance, a grassroots organization focused on reforming the US healthcare system to put patients before profits. The group often organizes protests against the dominant insulin manufacturers in the US, Eli Lilly, Novo Nordisk and Sanofi.

“This is an entire ecosystem of profiteering. We’re going to need systemic fixes and that means people are going to have to organize and mobilize,” added Dr Saini.

Between 2012 to 2016, the average cost of insulin in the United States nearly doubled to $5,705 per year for individuals with type 1 diabetes. Production costs for a vial of insulin are estimated to cost around $5 while pharmaceutical companies charge as high as $540 per vial and Americans are dying as a result of being unable to afford it in addition to the expensive costs of medical care, and supplies such as syringes and glucose monitors.

Some 1.25 million Americans are currently diagnosed with type 1 diabetes, an illness where people fail to produce insulin to regulate their blood sugar levels. That number is estimated to grow to 5 million by 2050.

Individuals with type 1 diabetes require several daily insulin doses, while those with type 2 diabetes require varying dosages. Individuals with type 2 diabetes, the most common form of diabetes, are able to produce some of their own insulin, but are unable to rely on it to control blood sugar levels.

The Centers for Disease Control and Prevention estimates 23.1 million Americans are diagnosed with diabetes, while millions more are either undiagnosed or pre-diabetic. An estimated 90 to 95% of diabetics have type 2 diabetes. According to a 2012 study, 2 million Americans under the age of 65 who are diabetic have no health insurance coverage. A 2017 study found diabetes is the third-leading cause of death in the United States.

Facebook Twitter Pinterest Meaghan Carter died at age 47 after struggling for six months to afford insulin after losing her job. Photograph: Courtesy Right Care Alliance

On Christmas Day in 2018, Meaghan Carter passed away in Dayton, Ohio, at the age of 47 after struggling for six months to afford insulin in the wake of losing her job with health insurance coverage. Carter was working part-time jobs as a nurse and waiting for her last paycheck that was deposited on 26 December as she was set to begin a new job with health insurance the week after Christmas.

“I want people to know that we miss Meaghan every day. Not a day goes by we don’t think about her. We wish we could talk to her. The pharmaceutical companies are the reason she’s not here,” said Mindi Patterson of Dayton, Ohio, Carter’s sister-in-law. Patterson’s two sons and husband also have type 1 diabetes. “The pharmaceutical companies murdered Meaghan. Meaghan did everything she could and managed for six months.”

High costs in the US often push those with type 1 diabetes to purchase insulin in Canada and other countries or to buy on the black market, where insulin can be purchased for a fraction of the cost.

“The cost of insulin when I was first diagnosed in 1991 was around $20,” said Quinn Nystrom, a Type 1 diabetic from Minnesota. Around five to six years ago, Nystrom began struggling with insulin costs despite having health insurance coverage under her employer.

“I remember having to pay a couple hundred dollars out of pocket. I thought it was a clerical error,” added Nystrom. “As it continued to hike up, it affected me personally by having to put my prescription meds on credit cards, having family bail me out just so I could afford my insulin supplies, and I’ve also utilized the black market.”

Deidre Waxman, a type 1 diabetic in Massachusetts, regularly purchases her insulin in Canada, where a prescription is not required for purchase, and often sends insulin to other diabetics around the US who struggle with affordability and access. Waxman said there was a simple solution to the crisis: a switch to a single-payer healthcare system financed by the government would solve the issues with the American healthcare system plaguing people with diabetes.

“If you look at the US Veterans Administration healthcare system, you will see that is socialized medicine. For the same exact insulin I pay $700 a month, veterans pay either zero or $8,” she said. “That’s what socialized medicine could help us with among many other things, but without the ability to negotiate prices, big pharma will always have us over a barrel.”

Facebook Twitter Pinterest Nicole Smith-Holt from Richfield, Minnesota, holds a vial with the ashes of her son Alec, who died at the age of 26 from insulin rationing, during a protest in November 2018. Photograph: John Tlumacki/Boston Globe via Getty Images

Earlier this year, Lija Greenseid of Minnesota organized “Caravan to Canada”, a campaign of type 1 diabetics and their families traveling to Canada as a group to purchase insulin and raise awareness around it’s soaring cost in the US. Greenseid has a 13-year-old daughter with type 1 diabetes and has travelled to several countries around the world, where she purchased insulin over the counter and at a fraction of the cost it is sold for in the United States. She has paid around $50 for a box of five insulin pens that cost as much as $700 in the United States.

“It should be a source of shame that we have a healthcare system that is extremely high quality for those who can access and afford it, but many have much worse healthcare because of the cost and complexities compared to other countries with different forms of healthcare systems,” said Greenseid. “In the United States the barriers cause harm and they are only there because the complex system is what allows everybody to make money to the detriment of patients.”

Greenseid and other diabetes advocates are currently pushing for legislation in Minnesota and on the federal level to lower insulin costs and hold pharmaceutical companies accountable for price gouging.

In Minnesota, the Alec Smith Emergency Insulin Act would create a program to provide emergency insulin to diabetics unable to afford insulin. The bill was held up in the most recent state legislative session over concerns about whether taxpayers of pharmaceutical companies would fund the program. The bill is named after the son of Nicole Smith-Holt, who passed away in 2017 at the age of 26 due to rationing insulin.

“Alec had a zest for life. He was interested, active, fun-loving. He was a hard-working young man and he wanted nothing more than to live a healthy, active life. But the Pharma companies took his life at a very young age,” said Smith-Holt. “They priced him out of his life. They made it so unaffordable that he did not have a choice and could not afford the product created for him to live. It’s frustrating to know there are no laws in place to prevent these pharma companies from doing this.”