Insulin prices shouldn’t force parents like me to work multiple jobs
The words “It’s a miracle your daughter is still alive” still ring in my ears. It was 2018 and I was sitting on the edge of my daughter Emily’s hospital bed as her medical team told us about her type 1 diabetes diagnosis. When Emily was admitted to the hospital with ketoacidosis diabetic, after experiencing weeks of extreme exhaustion, his blood sugar was so high it was considered “not suitable for life”. Her organs had started to shut down and she was on the verge of slipping into a coma.
The diagnosis took us completely by surprise. 17 is relatively late to discover juvenile diabetes. We knew it would mean lifestyle changes for both of us, but we had no idea how heavy this diagnosis would be.
Within a year of his diagnosis, I paid $10,000 for insulin alone after my deductible. That was the same cost with employer-sponsored health insurance. I can’t imagine how much more I would have paid if I wasn’t insured.
I am a single mother. To make ends meet and pay for my daughter’s insulin, we needed a complete realignment of our monthly budget. We looked for cheaper options at the grocery store. We stopped buying new clothes. We traveled less. If I hadn’t had several jobs, it would have been impossible to pay all the expenses necessary to care for my daughter.
Insulin has been around for almost 100 years. In 1923, insulin was patented and its three founders sold the rights to the patent for $1 each. They didn’t want to profit from a drug that would mean the difference between life and death for millions of people. Today it only costs about $2 to $6 make a bottle. Since the average needs of diabetics two to three vials of insulin per month, it should only cost between $50 and $150 manufacture the equivalent of one year’s worth of insulin per patient.
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Yet this is far from the reality for diabetics like my daughter. For Emily’s insulin, we paid about 10 times that annual amount each month. Why the hell is insulin so expensive? I have no other answer than the greed of the companies involved in manufacturing and supplying insulin to patients.
A century later, we could be on the cusp of a breakthrough that would bring much-needed relief. Nevada Sens. Catherine Cortez Masto and Jacky Rosen have co-sponsored federal legislation this would cap insulin co-payments at $35 per month for consumers. This cap on out-of-pocket spending would make insulin more accessible to millions of diabetics. Families like mine would be spared having to pay $10,000 a year just to afford a life-saving medicine that is priced way above the cost to manufacture it.
President Joe Biden has called on Congress to pass legislation that will reduce costs for families across the country. In addition to capping copayments, the Biden administration has championed a variety of meaningful prescription drug reforms, including giving Medicare the power to negotiate drug prices to make drugs more affordable.
After years of price hikes that have put insulin dangerously out of reach for diabetics, federal action is needed now more than ever. And diabetics know full well that insulin is just one of the many expenses associated with treating diabetes. I would feel terrible guilt when I couldn’t afford all the equipment needed for my daughter to fully treat her illness. We didn’t have the money to buy her an insulin pump, which meant she had to take four or five injections a day.
I already know the pain and grief of losing a child. I don’t want to worry about losing my daughter to diabetes. Fortunately, Emily now has stable health insurance through her husband, who is in the Air Force. Their insurance helps Emily afford a continuous blood sugar monitor, and she will soon have an insulin pump. But I have warned my daughter that she will never be able to do without insurance in the future; otherwise she would face the $10,000 annual cost that I did.
Federal action to curb soaring drug prices set by pharmaceutical companies is long overdue. Congress must cap insulin costs for the millions of diabetics who depend on this lifesaving drug, and leaders from Nevada to Washington can help push this legislation across the finish line.
Nevada Current is part of States Newsroom, a grant-supported network of news outlets and a coalition of donors as a 501c(3) public charity. Nevada Current maintains editorial independence. Contact Editor-in-Chief Hugh Jackson with any questions: [email protected] Follow Nevada Current on Facebook and Twitter.