Michiana Chronicles: Living on diabetic time
President Biden’s Inflation Reduction Act passed this August by eliminating components from his larger legislative agenda, one of which included getting rid of the $35 price cap for insulin in private medical insurance plans. This week, Anne Magnan-Park discusses what this means for her spouse, Aaron Magnan-Park, who is an insulin-dependent diabetic.
Anne: Hi Aaron. Thirty-eight years ago, you received the unwelcomed news that you had type 1 diabetes. How did this affect you and your family?
Aaron: I was seventeen. The doctors told me that I would be lucky to reach age 30. What? This meant that I had already lived half of my life! Diabetes does not run in my family so this medical diagnosis completely shocked us. As immigrants, we did not have medical insurance so I feared that my diabetes would bankrupt us. Under Confucianism, I became an undesirable marriage partner because I now had a “genetic defect” that could be passed onto my progeny. Career wise, the military was no longer possible. Can you imagine me asking everyone for a short time out so that I could check my blood sugar level in the heat of battle?
Anne: I can, and I like the idea! A cease-fire for self-care sounds like a necessary, provocative proposition. You often talk about living on “diabetic time.” What do you mean by that?
Aaron: Each type of insulin has a different timeframe of efficacy. So, this insulin clock dictates your daily schedule. I am also dependent on the vagaries of my blood-sugar level since any deviation beyond the norm means that I need to address the divergence immediately. Nevertheless, each day can be a real challenge. There is no magic formula that works consistently since forty-two factors can impact one’s blood sugar level. Unfortunately, doing the same thing day after day will not provide you with predictable and consistent readings.
Anne: And this can be confusing for a non-diabetic who may interpret the inconsistent readings as an unwillingness to take care of oneself. Why is there such a big fuss regarding insulin unaffordability in the United States?
Aaron: It costs only $10 to manufacture one vial of insulin but the retail price is set at $350. This is predatory profiteering by the “insulin cartel” of Eli Lilly, Novo Nordisk, and Sanofi. Keep in mind that the inventors of insulin sold the patent to the University of Toronto for just $1 as an act of positive medical ethics because they understood that this was a life or death discovery.
Insulin is just one of many medical costs associated with diabetic selfcare. Don’t forget blood glucose testing strips, lancets, ketostix, syringes, insulin pen needles, insulin pump supplies, continuous blood glucose monitors and sensors, alcohol swabs, and other accoutrements that one cannot do without. This comes on average to $800 per month just to stay alive.
I have lived in five other countries so I know that this doesn’t have to be the case. In Hong Kong, a full three-month supply of insulin, regardless of the number of vials one may need, only costs a total of, get this, $2. In France, it is even better! Diabetes is one of a number of chronic illnesses that are covered in full by its social security system.
Here in the US, the governor of California is stepping in to manufacture insulin and sell it just above cost to Californians. This is a step in the right direction.
Anne: Health should be a human right including in the home of Eli Lily, the Indianapolis chapter of what you call “the insulin cartel.” Have you found a “diabetic tribe” to connect with?
Aaron: I turned to podcasts such as Real Life Diabetes and websites such as diaTribe to connect with fellow diabetics. I found out that my personal diabetic struggles were universal rather than isolated events and that people wanted to share their insights with each other to help improve our collective lives.
Anne: I enjoyed the French organization Diabète et Randonnée [Hiking with Diabetes] the most so far. There, we shared the lived experience of hiking as a group on diabetic time. Pleasure, connectedness, and empowerment for all involved were at the center of the experience.
Thank you for sharing your thoughts. Diabetes is a wide-spread but somehow invisible disease, so I am grateful that you shared your reality.
Aaron: Thank you Anne for living on diabetic time with me. You add the tender sweetness that all diabetics need in our lives.
Anne and Aaron: For Michiana Chronicles, this is Aaron and Anne Magnan-Park.
Music: Elvis Presley, “Love Me Tender.”