This commentary is by Shaina Kasper, a resident of Montpelier and the policy manager at T1International, an independent nonprofit run by people with and affected by Type 1 diabetes.
Living with Type 1 diabetes is difficult — it must be continuously and carefully managed 24/7 with testing blood sugar levels and administering insulin. While insulin injections keep people with Type 1 diabetes alive and can help keep blood glucose levels within range, it is not a cure.
I was diagnosed with Type 1 diabetes as a senior in college and changed my intended career path to ensure that I would have a job where I would make enough money and have good enough benefits to pay for my diabetes care.
It has been 100 years since insulin was available for people with diabetes to use. Yet today, three companies — Eli Lilly, Novo Nordisk and Sanofi — dominate more than 90% of the insulin market. While production of insulin costs around $6 to manufacture, these three companies can charge whatever the market will bear, leading to skyrocketing prices as people who are dependent on insulin live bankrupt and sick.
One in four people who are insulin-dependent have reported the dangerous practice of rationing their insulin due to price, as the average patient cost of insulin has skyrocketed, resulting in devastating impacts and deaths.
I last rationed my insulin in 2019 when I accidentally packed an empty vial on an out-of-town work trip. After hours on the phone to send my prescription to a local pharmacy, my credit card was denied when I went to pick up my prescription and faced the $322 price tag, I was too embarrassed to ask for the financial assistance to pay for one vial of insulin out of pocket and watched my blood glucose climb over time until I got home.
The Affordable Insulin Now Act, sponsored by U.S. Sen. Raphael Warnock, D-Ga., proposing a $35 copay cap on insulin, is letting the pharmaceutical industry get away with its greed. Copay caps are an important step to capping the price of insulin, which is why 18 states (not including Vermont) have passed them in recent years — much to the pharmaceutical industry’s chagrin. But they continue to put the burden on patients to pay the cost through insurance companies.
They don’t cover those who are uninsured, and they don’t cumulatively cover all insulins a patient has been prescribed.
Our lives are not PR talking points for politicking. We need those in D.C. to stop messing around and pass a federal price cap on insulin (not just a copay cap) to begin to hold pharma accountable for its price-gouging.
I believe in a world where everyone with diabetes, no matter where they live, has everything they need to survive and achieve their dreams. That’s why I’m calling on Sen. Leahy, Sen. Sanders and Rep. Welch to introduce insulin affordability price cap legislation and to move quickly to get it passed through Congress.