The discovery of insulin 100 years ago “transformed diabetes from a death sentence to a chronic condition,” went the unflinching headline of a powerful look back at the strides and disparities in treatment and outcomes by the Endocrine Society last week. The centennial was acutely personal for many MoJo readers who wrote us with a mix of outrage at the obscenely high costs, celebration of the medical advances that save lives, and recognition of the vast work ahead. “Air” is how one reader describes the medicine that another reader says she has to “ration” to stay alive.
Your responses got to the heart of the relief, anger, strength, and stamina that diabetes demands, but there was also big-picture acknowledgment of the milestone: “Each year on July 27, I toast Frederick Banting and Charles Best,” insulin’s discoverers, a reader tells us. “It has been 50 years since I started injecting daily doses, and it has saved my life.”
Still, “the real expense is up to $1,000 a month” for a reader whose out-of-pocket cost is exorbitant. By contrast, an American living in the Netherlands tells us “there is no way I can afford to move back to the States” and keep getting insulin.
“I’m lucky to live in the UK,” writes a reader whose insulin is subsidized. “I am enormously grateful for this and frankly horrified at the situation in the US, where one’s ability to control this condition, and remain alive, is related to wealth.”
Care for family is a constant: “Insulin means that my little brother’s diagnosis of Type 1 diabetes at age 7 wasn’t a death sentence.” “My son’s blood will turn acidic within hours and he will die” without insulin. “I’m grateful for the discovery. But his insulin retails at $339.99 per vial.” Which is why policy debates are so visceral for the reader who points out that “General Wesley Clark famously said when he announced his presidential candidacy that every American deserved the same excellent medical care he got. I’ve always believed that his statement, with which I very much agree, is what brought out the long knives to end his brief political career.”
After co-pays and deductibles, “I still can’t afford” it, a reader writes, a pain point stemming from insulin’s patent: “Important for the story and often neglected is that the researchers who discovered insulin were reluctant to patent their process on grounds of medical ethics. Anyone suffering from the high cost of insulin needs to know that its discoverers at least wanted to ensure that it be widely available at low cost.”
Our colleague Steve Katz, MoJo’s publisher, told me after I ran our centennial piece last week that his son, Noah, who is diabetic, advocates for insulin justice. In a letter Steve shared with me that he’d written to thank a diabetes camp his family went to years ago, Steve summed up the tangible impact of support systems that “probably saved my son’s life. Noah was diagnosed with Type 1 [that] summer [and] we could see that it wasn’t about camp per se…It was about the fact that, being there, Noah had to face directly that he really did have this disease, it wasn’t going to go away, and his life had changed forever…Each [counselor] would sit with him at a meal or hang out with him in the ‘shot line’ where kids get their blood sugars checked and insulin dosed, and give their story of how it was for them and how it is and will be for him. And Noah saw that he could survive this. The experience was literally transformative.”
Steve wrote these words eight years ago. Reading it now makes me look ahead: In eight more years, on the 108th anniversary of insulin, will readers tell us again how you’ve survived not just diabetes itself but the staggering costs of its treatment in the wealthiest country in the world? As another reader tells us, “We should not need a coupon or ‘program’ to” stay alive.
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