At the start of the Covid-19 outbreak, when my insurance wouldn’t allow me to get a backup supply of the insulin I need to live, I received eight vials in the mail from my friend Rena. It’s not the first time I’ve had to rely on my type 1 diabetes family for backup: I’ve traded medications with a cyclist in the middle of Kansas, and been given glucose sensors from people via Instagram direct messages.
These exchanges are built on shared urgency. The 1.25 million Americans with type 1 diabetes, or T1D, must constantly regulate and administer a medication that both keeps them alive—and if over or underdosed, can kill them. But today, far too many diabetics struggle to access insulin and the medical devices necessary for our survival.
Discovered in 1922 by Frederick Banting, Charles Best, and James Collip, insulin is our life support. The trio sold their patent to the University of Toronto for $1 because they thought it would be unethical to profit off of such a discovery. Today, insulin manufacturer Eli Lilly has increased the cost of a one-month supply of insulin by 1200% over the course of 23 years. A vial of insulin can now cost up to $350.
That means a quarter of American type 1 diabetics—who are disproportionately Black, indigenous, or people of color—have needed to ration insulin, putting their lives at risk. Efforts made to increase access are met with resistance: Most recently, PhRMA, a pharmaceutical trade group representing the “big three” insulin manufacturers—Novo Nordisk, Eli Lilly, and Sanofi—sued to stop the passing of an insulin aid program named after Alec Smith, who lost his life when he tried to ration his insulin.
The approach doesn’t end with insulin. Today, people like me assemble what is essentially a stand-in pancreas with multiple ever-evolving components: a syringe or insulin pump to administer insulin, glucagon in case of severe low blood sugar, a blood glucose meter with accompanying test strips, and for those who can afford it, continuous glucose monitoring (CGM), to more closely keep track of blood sugar levels. As diabetes care has advanced, wide profit margins are built into new products, too.
CGM in particular vastly improves the management of type 1 diabetes. Through a fine needle that sits under my skin, a transmitter, and a Bluetooth connection, my Dexcom CGM system has mostly taken over for the eight to 15 daily finger pricks I used to endure. Every five minutes, a graph on my phone updates me on my glucose levels, sounding an alarm when I am too high or too low—both of which can be lethal. According to a 2016 modeling study, a CGM system “could reduce annual hospitalizations for hypoglycemia by 32%, which would reduce associated costs by $54 million.”
But the cost of this new generation of devices is prohibitive for many. The list price of the Dexcom CGM transmitter, for example, is $237.50, and it’s designed to be replaced every three months. Its $116-a-piece sensor, the disposable component that holds the transmitter and needle, expires after 10 days.
In an Instagram post sponsored by Abbott, the maker of a competing CGM system, the T1D nonprofit Beyond Type 1 asked its audience, “What is the main reason you’re NOT using a continuous glucose monitor?” Of the 213 who answered, 76% pointed to cost or availability. In a comment, Walt D. observed that “these kinds of technologies are prohibitively expensive for the vast majority of the people who could benefit most from them.” Cycling 1,000 miles through India this winter put a spotlight on my privilege: There, insulin pumps and CGM systems are rare, and diabetes is managed without the tools I’ve come to rely on.
Even if a type 1 diabetic can access a CGM system, they may have trouble managing the recurring expenses. Many of us send our expired Dexcom transmitter out to a member of our black-market community for refurbishment or attempt to do it ourselves. For years, I’ve relied on a popular underground technique that extends a sensor’s lifespan by tricking the app into thinking I am inserting a new one. Along with so many of my friends, I’ve risked infection to save money.
By virtue of the racial disparities in healthcare coverage, those risks are higher for diabetics of color. A study of more than 10,000 American children found that compared with white children, Black children with T1D are almost four times less likely to be using an insulin pump, a device that drastically improves quality of life with the disease. The study, recently brought to light by Jordan Hoese, MD, MPH, also points out that Black people with T1D under 25 have a mortality rate nine times higher than their white counterparts.
It doesn’t have to be this way. Buried inside my Dexcom CGM transmitter, for example, is a $1.35 watch battery. It could be replaceable if Dexcom engineered it that way, or went the route of swapping it with a rechargeable battery like the one in Medtronic’s MiniMed Guardian Link transmitter.
While keeping profit margins high, Dexcom has promoted its devices to higher-income groups via marketing tactics such as influencer-sponsored Instagram posts. Diabetes supply manufacturers are building and marketing their products to perpetuate a world where temporary cures are only available to those who can afford them.
Insulin, glucagon, CGM systems, blood glucose meter supplies, and insulin pumps are not accessories to advertise, taking advantage of the United States’ status as one of two countries in the world that allow direct-to-consumer advertising of prescription drugs. They are medications we should find out about from our doctors, not from our Instagram feeds.
At the start of the pandemic, when I was confronting my own insulin shortage, insulin manufacturer Novo Nordisk started running full-page ads in the New York Times, letting readers know that NovoCare, their patient assistance program, is here to help if you can’t afford your insulin. But band-aids like financial assistance programs, ads, limited-time copays, sponsorships, and coupons won’t change the fundamental inequalities perpetuated by profit-seeking pricing. These companies need to start lowering the cost of our oxygen so we don’t need a coupon to afford it.