And: "I know your employers would prefer it if I died."
And: “You work for an evil corporation and what you do is immoral.”
And: "I’m going to stay on this insurance forever so when I have to get my foot amputated because you denied my claims you’ll have to pay for that, too."
And: “Forgive me. I know it's not your fault. It's just that I'm so afraid, all the time.”
I’ve been a type 1 diabetic for 16 years. Up to 10 times every day, I test my blood sugar by pricking my finger and feeding some of my blood into a small plastic strip. Without insurance, each blood test strip costs $1.40. After I test my blood sugar, I often have to inject myself with insulin. One vial of Humalog, the insulin I use, costs $270 (up from $50 the year I was diagnosed). One vial lasts me about 10 days, roughly the same amount of time I would be able to live without it. At a minimum, that’s $1,230 each month—an amount I cannot afford.
Insurance companies deny claims like it’s their job (because it is). I’ve had more than six different insurance plans (of a wide range of quality) and every one has denied at least one claim. Every so often, my insurance company decides not to cover the kind of insulin I’ve used for 10 years, or decides that I don’t need to test my blood sugar as often as my doctor thinks I do. So I switch insulins, or I test my blood sugar less frequently. There’s a cost to both of these things—there’s a learning curve to new insulins, and I risk dangerously high or low blood sugar as I adjust. Testing my blood sugar less means I have less control over my sugars. In both cases, the short-term cost is lower than the long-term one. High blood sugars can lead to blindness, kidney failure, strokes, and a whole host of other complications.
Despite being one denied claim away from death at all times, I don’t look sick. I ran a marathon. I go for the occasional hike. I get drunk, and I worry more about what getting drunk will do to my skin than to my internal organs. I have a full-time job.
Despite being one denied claim away from death at all times, I don’t look sick.
My current employer pays the entire monthly cost of my insurance plan. In theory my insurance covers a large portion of the cost of the medications that keep me alive (putting my out-of-pocket cost at around $160 a month). Except when they don’t—that’s when I spew bile at customer service reps.
In my defense, I start with Please. “Please,” I say in the first of two dozen phone calls about a medication they say they won’t cover. “I will literally die without this.” Sometimes they’re kind. Often they lie—they’ll say coverage has been approved when it hasn’t, or that a reimbursement check is in the mail. One person will tell me they tried to contact my doctor to no avail, and the next will say they would never contact my doctor—“Not our job.” When I have to call back, I shout down the phone at the automated system: “REPRESENTATIVE!” (My partner, next to me on the couch, loves this.)
I think it’s funny (though not funny ha-ha) that we call it health insurance. Insurance is what you have in case your house catches on fire, or someone rear-ends your car. The system might make sense if illness and injury weren’t such inevitable parts of the condition of owning a body. As a person with diabetes, I feel like my house is always on fire, and I drive a totaled car. Illness isn’t the worst-case scenario for me—it’s just the scenario. I’ve never gone longer than a week without health insurance, but that doesn’t stop me from being terrified of losing it. I’m terrified all the time. Even with insurance, a for-profit corporation gets to decide whether the medicine I need to live is within my reach.
Last year, a 26-year-old type 1 diabetic named Alec Smith died from diabetic ketoacidosis, a condition caused by lack of insulin. Alec had a job as a restaurant manager, and made too much money to qualify for Medicaid or insurance subsidies but not enough to pay for insulin on his own. Well-meaning friends sent me this article, and ones like it that came out in the months after. “People are paying attention,” they assured me. “Now something has to change.” But pharmaceutical companies are powerful enough to weather the storm of a few high-profile deaths.
Insurance is what you have in case your house catches on fire, or someone rear-ends your car. The system might make sense if illness and injury weren’t such inevitable parts of the condition of owning a body.
I’m furious when I hear a pundit suggest that there is such a thing, in this country, as “good insurance that you can afford that protects you when you need it most.” As long as a company’s profits depend on denying people access to life-saving medications, they will continue to do so. As long as access to healthcare is inextricably tied to employment, wealth, or both, we should all live in fear. If you don’t think healthcare is a human right, congratulations on your excellent health. As long as a corporation can deny me the drug I need to live, I’m not safe. And because all human bodies are fallible, none of us is safe.
I’m flip about diabetes, most of the time. It’s easier to joke than to acknowledge how much fear I feel. I’m going to try to stay alive, just to spite my insurance company. And to vote, of course.
For more information and resources regarding living with diabetes, visit the American Diabetes Association.
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