Some diseases kill because they’re so aggressive, or medicine simply doesn’t work. But other diseases — like the type 1 diabetes my 10-year-old daughter was diagnosed with three years ago — can be 100 percent effectively managed by medicine. Yet people are still dying from type 1 diabetes because insulin, the drug they need to survive, is so expensive.
Just before Lexi was diagnosed, we noticed she was experiencing an unquenchable thirst, frequent trips to the bathroom, weight loss, and extreme hunger. She also looked tired and lacked energy. When I called the doctor, I was told to immediately pick her up from school and bring her to a walk-in care facility. That day, my daughter unwillingly joined the ranks of about 1.25 million other Americans with type 1 diabetes—one more among the 40,000 diagnoses made each year, according to estimates by the nonprofit organization BeyondType1.Org.
A vial of insulin costs just a few dollars to manufacture. Depending on the body’s sensitivity to insulin, a person may need several vials each month. My daughter, who is 80 pounds soaking wet, uses just over one vial per month. The cost of insulin is highest in Maine, where my family lives, analysis by the nonprofit Health Care Cost Institute found. In 2016 a 40-day supply ran $865; in California, it was less than half that.
My family is “lucky” — we’ve made personal and professional choices, some that we question every day, so that we have access to insulin for our daughter and don’t have to ration it. But 1 in 4 US patients rations insulin because of cost, according to T1International, a nonprofit advocacy organization [PDF]. Some parents have to work more than one job — they post on Twitter about becoming drivers for Lyft, Uber, or DoorDash on nights and weekends; some even consider selling their homes to cover the costs of medication for their children. Others will go bankrupt.
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“No matter how many jobs you have, the credit card debt for the annual expense of $12,000 for just insulin, is absurd,” says Nathan Loewy, a father in Minnesota who, along with his son, has type 1 diabetes. “Between holding multiple jobs, working side jobs, maxing out credit cards, and, at times, relying on the black market to make it to the next month, we have survived. However, we are not unscathed,” he told me via e-mail. Loewy’s wife has type 2 diabetes. After paying their $5,000 deductible, the family still has insulin bills for about $7,000 out of pocket for the remainder of the year. Other necessary items not covered include blood glucose test strips, continuous glucose monitors, and insulin pump supplies.
Patients are told to discard opened insulin after 30 days because it loses potency. Of course, when you’re dealing with liquid gold, not everyone abides by the expiration date. More people in the United States ration their insulin than in other countries, The Boston Globe reported. Some survive this constant experiment; some don’t. They can land in the emergency room if they’ve waited too long and their blood is already becoming acidic. Not only is this life-threatening, it also takes up beds and doctors’ time solely to get insulin.
This is a real fear for parents, especially as children become adults and need their own health insurance. “Having to reassure a child that they will not end up having to ration their insulin is heart-breaking,” says Loewy, “especially when I cannot guarantee that to be true, as big pharma has made it clear that they value profits over patients.”
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Three giant corporations, Eli Lilly & Co., Novo Nordisk, and Sanofi, manufacture insulin and essentially control the global market, making billions in the process. Over three months in 2019, Eli Lilly’s revenue on Humalog insulin was $396 million in the United States alone. Mark-ups by the big three have sent some to Canada, where a vial of insulin costs about one-tenth what it does here, around $35.
Some people turn to social media for help, tweeting that they’ve run out of insulin and aren’t due for a refill yet. In a hurry, these needs are retweeted and met by the diabetes community—with no help from those with the power to address this crisis.
Last year, Colorado became the first state to cap insulin cost. There’s a lot of talk among lawmakers elsewhere to follow suit, and the Massachusetts Senate unanimously passed a bill in November that would establish a monthly cap of $25. Senator Elizabeth Warren mentioned the exorbitant cost of insulin in several presidential primary debates. She’s proposed the government manufacture a generic insulin. But to those who actually require insulin, permanent action is needed. Otherwise, these proposals seem like mere brainstorming.
When our government and pharmaceutical companies value wealth over human lives, who really wins? Or, perhaps a better question, who sleeps at night? My partner and I can’t. If we aren’t correcting high blood sugar or treating low blood sugar, we’re awake wondering when our worries will be contained to the disease and not the cost that comes with it.
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Nearly 100 years ago, Dr. Frederick Banting used insulin to treat patients with diabetes and shared a Nobel Prize for its discovery. He sold the patent rights to the University of Toronto for $1. “Insulin does not belong to me, it belongs to the world,” Banting proclaimed. Yet, here we are in 2020 and insulin does not belong to the world. Instead, greedy corporations are using it to line their pockets. Who will be the one to release insulin back where it belongs?
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Erinne Magee is a writer based in Maine. Send comments to magazine@globe.com .