Josh Wilkerson was all alone, in sleeping quarters above the northern Virginia dog kennel where he was working at, when he suffered a series of strokes that would prove fatal.
He had aged out of his stepfather’s health insurance plan on his 26th birthday and eventually switched to over-the-counter insulin.
Like many other diabetics his age, he could not afford the prescription brand he needed. A few hours after taking another dose of the lower-grade medication that June day in Leesburg, Wilkerson was in the throes of a diabetic coma – his blood sugar level 17 times higher than what is considered normal.
His death at age 27 illustrates the worst-case scenario for thousands of lower-income people living with diabetes in the United States who depend on over-the-counter insulin that – for $25 a vial at Walmart – sells for one-tenth of what the more effective version costs.
“It’s very hard,” said his fiancee, Rose Walters, 27, who, like Wilkerson, was born with a congenital form of the disease known as Type 1 diabetes. “How many more young Type 1 diabetes patients have to die before something finally changes?”
The skyrocketing price of insulin – which emulates the hormone secreted by the pancreas to regulate glucose in the blood – has stirred widespread outrage in the United States, amid reports of people dying after rationing the medication, begging online for help with costs or venturing out of the country in search of better deals.
In Congress, a bipartisan panel has called for legislation aimed at reducing insulin costs for the 7.5 million Americans who rely on the medication, prompting drug manufacturers to offer discounts. Some states are pursuing their own laws.
Last week, the Trump administration announced steps to allow states to import lower-priced medication from Canada – a plan that could potentially include insulin, officials said.
A few days earlier, Sen. Bernie Sanders, I-Vt., joined a group of people with Type 1 diabetes on a bus from Detroit to Windsor, Ontario, where they found insulin sold for a tiny fraction of what it costs in the United States. “People are dying,” said Desralynn Cole, 36, who joined the Democratic presidential hopeful on the trip. “Everyone should be concerned about this.” The more affordable form of the medication – sold by Walmart since 2000 under its ReliOn brand – is known as “human insulin.”
It predates the genetically altered “analogue” insulin doctors routinely prescribe. While human insulin can require as many as four hours to take effect, with varying levels of success, analogue insulin is more precise and takes as little as 20 minutes to regulate blood sugar levels, patient advocates say.
But with analogue insulin prices nearly tripling since 2002, doctors have begunrecommending the cheaper version as a stopgap – a strategy endorsed for “some patients” by the American Diabetes Association in a white paper published last year.
Allison Bailey, U.S. advocacy manager for T1International, a nonprofit organization for people with Type 1 diabetes, said human insulin may work better for people who have Type 2 diabetes, the form of the disease that develops more often in people who are overweight and that is more manageable with diet and exercise. For the estimated 1.25 million people with Type 1 diabetes in the United States, using human insulin is riskier.
Their bodies typically are unable to produce any natural insulin, leaving them more vulnerable to fluctuations in blood sugar levels without careful monitoring, Bailey said. “There is a lot of room for error,” she said. “You need to have one-on-one communication with a health provider who is going to be able to guide you through some of this, which isn’t always available to someone who is on a lower income.”
Walmart, which partnered with the pharmaceutical company Novo Nordisk to sell ReliOn, would not disclose figures for insulin sales. Todd Hobbs, chief medical officer for Novo Nordisk in North America, said human insulin works just as well as analogue insulin if taken far enough in advance of meals.