Healthcare activism is failing us — Where did we go wrong?

Lily Gordon, Contributing Writer

I have been diabetic for 19 years. In that time, I’ve been involved in a multitude of nonprofits and activist circles. From the time I was diagnosed, my family and I took part in fundraising campaigns, went on awareness walks and volunteered as advocates and ambassadors. It was empowering and unifying to stand with and for people like myself.

I’m still involved in the diabetes community today, and I cannot overstate the sense of purpose that allyship gives me. However, I’ve always had a feeling that what I was doing was superficial, and that I could be doing more. What did my advice and story mean when people were truly struggling — people going without insulin, people with subpar access to care or none at all?

These feelings crystallized for me when I saw the non-profit Breakthrough T1D (formerly JDRF) ring the opening bell of the Nasdaq stock market. 

It was an innocuous enough announcement, but something about it felt like a perversion of purpose. Why was a nonprofit organization doing something so clearly tied to profit?

I recall times I’ve worked with other young diabetic people, and how issues with insurance coverage and insulin access were seen as relatable day-in-the-life moments. I recall how collaborations with price-gouging pharmaceutical companies are commonplace and how we have meetings with congressmen who bemoan any form of state-funded healthcare. 

We are so decent — so kind — to systems and circumstances that leave us for dead.

Insulin was isolated for use in humans by Sir Frederick Banting and Charles H. Best in 1921. In 1923, they sold the patent for insulin for just one Canadian dollar. Prior to their discoveries, the best diabetes treatment was intensive fasting — the diagnosis meant certain death. Banting is best known for selling the patent for a symbolic dollar, an act of altruism antithetical to our status quo. 

After they were legally allowed to charge for insulin, Eli Lilly began to rake in millions of dollars. Banting and his team of fellow scientists were disturbed at the idea of making a profit from a life-saving drug — their licensing was done carefully and thoughtfully. 

In more recent years, specific price caps on insulin have been implemented, but the lifelong expense is still exorbitant, especially factoring in things beyond insulin: pumps and pens, glucagon, continuous glucose monitoring (CGM) systems and more. Programs exist and help cut costs but they aren’t universal, and insulin manufacturers still engage in monopoly practices. 

“Affordability” right now is essentially being lucky enough to qualify for programs, having good insurance and having the money to cover what you need. It’s situational.

When we talk about affordability in politics and activism, we forget diabetes is a chronic, lifelong illness. While insulin price caps are a win, they are not a silver bullet. 

I will be paying for insulin and pump supplies until I am gone or until a cure is found. All of these “extra” things provide a quality of life, and in many cases are necessary for me to stay alive. I have a model of an insulin pump that cannot function without access to continuous glucose monitoring, and were my CGM to become unaffordable, I would be lost. Without emergency glucagon, my blood glucose can drop so low that I could fall into a coma. Affordable insulin is just the first step of many.

There’s a layer of abstraction in how we discuss the affordability of medicine. We — meaning lawmakers, advocates and advocacy groups — forget this is a matter of life and death. Every person made to ration insulin or go without is someone slowly wasting away, someone suffering for no reason other than greed and ineptitude. 

What president or political party gets to claim the win of implementing a price cap is irrelevant so long as one person is at risk of life-altering — or life-ending — consequences from lack of access to healthcare.

Insulin affordability programs are a milestone, but there is a difference between staying alive and living. Until all of the necessary treatments for a diabetic person are easy to obtain, we are merely surviving. People without insurance or on government programs that are constantly under threat by funding cuts and repeals are not living, they are surviving. Until healthcare — life — is guaranteed, we are all dancing on the knife’s edge, one financial crisis away from disaster.

Banting is often quoted as saying something along the lines of “insulin does not belong to me, it belongs to the world.” 

Dragging our feet on providing affordable healthcare to the people of this country is not only a blight on his legacy, but it is also actively costing human beings their lives and livelihoods. 

For Banting’s honor and for the safety of people with diabetes, we need to do better.