Turning to social media to get affordable insulin: a clear sign of a broken health care system

By Alina BillsMarch 3, 2022Reprints

Iam part of an underground market for drugs that looks a lot different from what you might imagine. It’s a network of Facebook groups and mutual aid organizations plus donors on Twitter that provide insulin and other supplies to people with diabetes.

The outrageous cost of insulin puts this life-sustaining medicine out of reach for many people, not just for those without insurance or people who are temporarily down on their luck. It also includes people with diabetes like me who are employed and have health insurance but who simply can’t afford to pay hundreds of dollars for an extra vial of insulin.

People with type 1 diabetes cannot do without insulin. Unable to make their own insulin, they must inject it several times a day, or use a pump that delivers it. Without insulin, a person’s blood sugar level skyrockets. If this persists, it can develop into ketoacidosis, a toxic buildup of acids in the bloodstream that can lead to coma or death.

I was diagnosed with type 1 diabetes when I was four years old. I’m now 26. As I’ve become more involved in the community of people with diabetes, I’ve realized how lucky I and my family have been to afford insulin over the last two decades. But many people with diabetes sooner or later face an emergency when they can’t get the insulin they need. It happened to me last year.Related: Civica Rx has an ambitious plan to make low-cost insulin for all Americans. But can it work?

I urgently needed a single vial of insulin to hold me over until I could refill my prescription. At the pharmacy, I was quoted a price of $371 for one vial of insulin, which normally lasts me about three weeks, and that amount was after my health insurance had been factored in. I left the pharmacy empty-handed because I knew I couldn’t pay that.

That’s the reality faced by many Americans with diabetes. On average, a vial of insulin retails for around $300, a sum that has tripled over the past decade. That puts the drug out of reach for many people who desperately need it.

People with diabetes have developed a work-around: an online community in which people who have extra insulin or other diabetes supplies share them with those in need.

The Twitter hashtag #insulin4all brings up hundreds of posts — some are by people asking for help, and some are by those offering supplies. One person wrote that a paperwork mix-up blocked them from obtaining their prescription. Another wrote they’d lost their job and could no longer afford their insulin. Yet another wrote that their insulin pump broke and they urgently needed a replacement.

So, when I was faced with a $371 pharmacy bill I couldn’t pay, I reached out to the network. Someone offered me a vial of insulin to tide me over. A few months later, I was able to return the favor and gave them a vial when I had enough to share. Another time I needed additional “pods” — small, wearable insulin pumps. Someone posted that they had extras: I reached out, and they sent me some. All I had to cover was the shipping cost.Related: Michigan attorney general pursues investigation into Lilly’s ‘grossly’ excessive insulin prices

Once my insurance hits my out-of-pocket max, I store away extra insulin to ensure I have enough for any emergencies and to give to others who may need it. It’s something people with diabetes do to help one another, because the health care system certainly doesn’t.

People with diabetes shouldn’t be forced into an underground market to access the medications and supplies they need to survive.

It’s one of the many reasons why Congress must pass President Biden’s economic plan. It includes provisions for reducing the price of expensive drugs like insulin, which he specifically called out in his State of the Union address on Tuesday. The president’s plan to cap the cost of insulin and other drugs is an important first step toward helping people with diabetes live long, healthy lives free from the fear of wondering how they will get their next vial of insulin. But progress on this front shouldn’t stop at capping insulin copays.

More important than the cost savings are the lives that would be saved. Some people with diabetes get desperate enough to ration their insulin — taking less than the prescribed dose because they can’t afford to take full doses. It’s a dangerous practice. Through my advocacy work, I’ve known several people who died from rationing. If not for the insulin and online sharing networks, I’m sure that the number of preventable hospitalizations and deaths would be far higher among people with diabetes.

Saying that insulin should be affordable for all means ensuring it is within the financial means of everyone, regardless of income and regardless of employment or insurance status. And it shouldn’t require them to join a Facebook group or follow Twitter hashtags to get it. As the president said in his speech, “So what are we waiting for? Let’s get this done.”

Alina Bills is a program manager at Emory University, an advocate for individuals facing medical disparities, and the former leader of the Georgia Insulin 4 All chapter. She wrote this essay in partnership with the Center for American Progress Action Fund, which advocates for progressive policies.