In my work as a diabetes-care provider, I see insulin insecurity all the time. With the advent of the COVID-19 pandemic and resulting job and insurance losses, it’s gotten much more desperate.
I recently saw a patient with less than half a vial of insulin left and no idea how she would afford more. Before COVID-19, she would’ve had the option to cross into Canada and buy insulin for $40 versus more than $300 a vial stateside.
With border closures, many who relied on this tactic to acquire medications are unsure how to proceed. My patient’s options are limited: She can ration the insulin on hand until she can afford to buy more — a potentially fatal practice. One in four Americans with diabetes is currently rationing insulin due to its high price tag, and several have lost their lives in recent years. She can also apply for temporary financial assistance through an insulin manufacturer or nonprofit, a strategy that will likely require hours on the phone with no guarantee of approval. And as a last resort, she could purchase ReliOn, an older formulation sold over-the-counter at Walmart for $25 per vial. This insulin requires adherence to a very rigid eating schedule, and its absorption rate can be unpredictable, conferring a high risk of severe hypoglycemia.
Just over 7 million Americans require insulin. For the 1.5 million Americans with type 1 diabetes, including me, this medication is essential to survive. As we struggle to afford insulin due to high insurance deductible or copays, the lack of insurance, or Medicare’s dreaded “doughnut hole” coverage gap, we are literally fighting for our lives.
We are resorting to GoFundMe pages to finance insulin. We are buying insulin off Craigslist and OfferUp. We are getting married earlier than we had planned so that we’ll be covered by our partners’ insurance. We are choosing between insulin or paying for rent or food. We are skipping doses. Many of us are dying.
And now we have to manage life with COVID-19 — which for people with diabetes means not only a two- to threefold higher risk of dying if we’re infected with the virus, but also experiencing the economic calamity that has created an avalanche of people needing insulin support.
In response, insulin manufacturers Eli Lilly, Sanofi and Novo Nordisk have introduced temporary programs. One program allows people to purchase a monthly insulin allotment for just $35. Another offers a free 90-day supply of insulin to those who find themselves uninsured due to COVID-19. Enrollees must jump through multiple hoops to qualify, but these measures are a step in the right direction.
Additional insurance protections have also temporarily reduced anxiety. Washington state enacted a law to limit out-of-pocket insulin costs to $100 per month, a measure that will take effect in 2021 — but sadly is slated to expire in 2023.
We’ve yet to see how the Trump administration’s executive orders to curb drug prices, signed July 24, will affect insulin’s price tag. The orders are less ambitious than health care reform bills such as H.R.3 and, while suggestive of forward progress, are unlikely to significantly reduce what Americans with diabetes pay for medications.
Insulin affordability shouldn’t be an ad hoc, stopgap measure. Rather, it is a sensibility that recognizes that people with diabetes need reliable and consistently affordable sources of insulin at all times. There isn’t a silver bullet, but many protections put into place during the COVID-19 era should be cemented into law.
Of course there is more to be done:
First, the federal government must cap insulin manufacturers’ prices in the United States and curtail annual price increases. Efforts to align U.S. insulin prices at an international reference point have stalled. We also need to rethink patenting protections that allow manufacturers to keep biosimilar and generic drugs from reaching the marketplace. We seek more transparency into how prices are set throughout the insulin supply chain, with special attention paid to the role of middle men such as pharmacy benefit managers.
We need national laws that provide access to insulin in emergency situations for all people with diabetes and especially for patients with type 1 diabetes. We caregivers need to routinely ask patients with diabetes if they are struggling to afford insulin — and be prepared to support those who are.
We need more people to write to state and federal representatives to advocate for change. It takes five minutes and means so much. The American Diabetes Association has made it easy to contact lawmakers.
Americans living with diabetes need your help, both with your voice and your vote. Activist Gloria Anzaldúa once said, “It is not good enough to see and recognize and know. We need to act upon what we know, to do something about it.”
Well, now you know.