Underground insulin exchanges emerge as workers lose jobs, insurance co-pays fall short

DENVER — D.j. Mattern had her Type 1 diabetes under control until COVID-19’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 couple of samples. But, as she rationed her supplies, her blood sugar rose so high that 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 — including Illinois — to put a cap on the co-payments that some insurers can charge consumers for insulin.

But, as the coronavirus pandemic has caused people to lose their jobs and health insurance, demand for insulin sharing has skyrocketed. Many who once had good insurance are now realizing the $100 cap for a 30-day supply is just a partial solution, applying only to state-regulated health plans.

It does nothing for the majority of people with employer-sponsored plans or those without insurance coverage. According to the Colorado 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.

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