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