As job loss strips Americans of health insurance, people with diabetes turn to insulin-sharing underground


D.j. Mattern had her Type 1 diabetes under control until COVID’s economic upheaval cost her husband his hotel maintenance job and their health coverage. The 42-year-old Denver woman suddenly faced insulin’s exorbitant list price — anywhere from $125 to $450 per vial — just as their household income shrank.

She scrounged extra insulin from friends, and her doctor gave her a few samples. But as she rationed her supplies, her blood sugar rose so high her glucose monitor couldn’t even register a number. In June, she was hospitalized.

“My blood was too acidic. My system was shutting down. My digestive tract was paralyzed,” Mattern said, after three weeks in the hospital. “I was almost near death.”

So she turned to a growing underground network of people with diabetes who share extra insulin when they have it, free of charge. It wasn’t supposed to be this way, many thought, after Colorado last year became the first of 12 states to implement a cap on copayments that some insurers can charge consumers for insulin.

But as the coronavirus pandemic has caused people to lose jobs and health insurance, demand for insulin sharing has skyrocketed. Many patients who once had good insurance are now realizing the $100 cap is only a partial solution, applying just to state-regulated health plans.

Colorado’s cap does nothing for the majority of people with employer-sponsored plans or those without insurance. According to the state chapter of Type 1 International, an insulin access advocacy group, only 3% of patients with Type 1 diabetes under 65 could benefit from the cap.

Such laws, often backed by pharmaceutical companies, give the impression that things are improving, said Colorado chapter leader Martha Bierut. “But the reality is, we have a much longer road ahead of us.”

After D.j. Mattern lost her health insurance earlier this year, she turned to an underground network to secure insulin for her Type 1 diabetes before recently qualifying for Medicaid. At home in Denver, Mattern displays her insulin pens. (Rachel Woolf for KHN)
After D.j. Mattern lost her health insurance earlier this year, she turned to an underground network to secure insulin for her Type 1 diabetes before recently qualifying for Medicaid. At home in Denver, Mattern displays her insulin pens. (Rachel Woolf for KHN)(Rachel Woolf / Rachel Woolf for KHN)

The struggle to afford insulin has forced many people into that underground network. Through social media and word-of-mouth, those in need of insulin connect with counterparts who have a supply to spare. Insurers typically allow patients a set amount of insulin per month, but patients use varying amounts to control their blood sugar levels depending on factors such as diet and physical activity.

Though it’s illegal to share a prescription medication, those involved say they simply don’t care: They’re out to save lives. They bristle at the suggestion that the exchanges resemble back-alley drug deals. The supplies are given freely, and no money changes hands.

For those who can’t afford their insulin, they have little choice. It’s a your-money-or-your-life scenario for which the American free-market health care system seems to have no answer.

“I can choose not to buy the iPhone or a new car or to have avocado toast for breakfast,” said Jill Weinstein, who lives in Denver and has Type 1 diabetes. “I can’t choose not to buy the insulin, because I will die.”

Almost all large companies have health plans that cover video chats between patients and providers, and the virtual offers are expanding next year. In this March photo, Dr. Ryan Klitgaard (right) speaks with a patient during a telemedicine visit at his clinic in Colleyville.