The author, Suzan Smith and her daughter, Emily
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 talked us through her Type-1 diabetes diagnosis. When Emily was admitted to the hospital with diabetic ketoacidosis, after experiencing weeks of extreme exhaustion, her blood sugar levels were so high that they were considered “not conducive to life.” Her organs had begun shutting down and she was on the verge of slipping into a coma.
The diagnosis caught us completely by surprise. Age 17 is relatively late to discover juvenile diabetes. We knew this would mean lifestyle changes for both of us, but we had no clue the weight this diagnosis would carry.
In the year following her diagnosis, I paid $10,000 for insulin alone after my deductible. That was the cost even with employer-sponsored health insurance. I cannot imagine how much more I would have paid if I were uninsured.
I am a single mother. To make ends meet and afford my daughter’s insulin, we needed a complete realignment of our monthly budget. We sourced for cheaper options at the grocery store. We stopped buying new clothes. We traveled less. If I hadn’t worked multiple jobs, it would have been impossible to afford all the expenses required for my daughter’s care.
Insulin has been around for nearly 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 off a drug that would be the difference between life and death for millions. Today, it costs only about $2 to $6 to manufacture a vial. Given that the average diabetic needs two to three vials of insulin per month, it should only cost between $50 to $150 to manufacture a year’s worth of insulin per patient.
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Yet this is far from the reality diabetics like my daughter face. For Emily’s insulin, we paid about 10 times that yearly amount every month. Why on earth is insulin this expensive? I have no answer other than greed on the part of the companies involved in manufacturing and supplying insulin to patients.
A century later, we might be on the cusp of a breakthrough that would bring a much needed measure of relief. Nevada Sens. Catherine Cortez Masto and Jacky Rosen have co-sponsored federal legislation that would cap insulin copays at $35 a month for consumers. This cap on out-of-pocket costs would make insulin more accessible for millions of diabetics. Families like mine would be spared having to pay $10,000 a year just to afford a life-saving drug priced far above its manufacturing cost.
President Joe Biden has called on Congress to pass legislation that will lower costs for families across the country. In addition to capping copays, the Biden administration has championed a variety of meaningful prescription drug reforms, including giving Medicare the authority to negotiate drug prices to make medications more affordable.
After years of price hikes that put insulin dangerously out of reach for diabetics, federal action is needed now more than ever. And diabetics know all too well that insulin is just one of the many expenses when it comes to treating diabetes. I would experience terrible guilt when I couldn’t afford all the equipment for my daughter to fully treat her disease. We didn’t have the money to buy her an insulin pump, which meant she had to give herself 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 glucose monitor, and she will soon have an insulin pump. But I’ve warned my daughter that she can never go without insurance in the future; otherwise, she would face the yearly $10,000 cost I did.
Federal action to rein in runaway drug prices set by pharmaceutical companies is long overdue. Congress must cap insulin costs for the millions of diabetics who depend on this life-saving medication, and Nevada’s leaders in Washington can help get this legislation over the finish line.
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