When the Insurance Company Said It Wouldn’t Cover My Son’s Insulin

We recently got a letter from our insurance company. It was addressed to my younger son. He is fourteen.

“Dear BRIGGS, We want to keep you informed about changes in coverage for certain drugs, so you can make the best choices for your health care. We are sending this letter to let you know that as of 4/1/2018, HUMALOG INJ 100/ML will no longer be covered by your prescription drug plan.” Although Briggs has been kept alive by Humalog since 2011, when I read these sentences, I did not feel worried. I had heard many stories about insurance companies switching allegiance from Eli Lilly to Novo Nordisk, or Novo Nordisk to Eli Lilly, and figured this letter was related to something similar. You know the drill: corrupt geezers from the pharmaceutical and insurance industries golfing at Mar-a-Lago, making deals and champagne toasts, and later farting hot, self-satisfied farts in their beds as they dream of Patek Philippe wristwatches.

Back to the letter: I assumed the next sentence would say that in place of Humalog, our plan would now cover NovoLog. However, there was no next sentence about NovoLog. Instead, the letter answered the question on every reader’s mind: What now? “Your doctor may be able to prescribe an alternative treatment, so we encourage you to call or make an appointment as soon as possible.”

Okay, then. As advised by the letter, I told my boys’ pediatric endocrinologist about the letter, and asked about a new prescription for different insulin. Our doctor asked me to contact the insurer to ask which insulin would be covered, so he could write the boys’ prescriptions for that very one. Next, I called the number provided in the letter for those of us with questions. I asked if NovoLog would be covered in Humalog’s place. No, NovoLog is not covered by your plan. How about Apidra? No, that is not covered. How about Fiasp? No, that one’s not even listed. Are you sure Humalog won’t be covered? Yes, that’s right. The representative said she would contact another department about researching “alternative treatments for your son’s diabetes” and call me back with a suggestion. She did not call back.

While I was naively waiting for that call back, and wondering why it was so difficult to find out what “alternative treatment” the insurer would cover, I posted a synopsis of the insurance company’s letter and my experience on Facebook. I was hoping some d-friends would know which insulin would be covered. In response, I got seventy-nine angry, wow, and sad faces; lots of (very satisfying!) WTF?s; affirmations of my own evident goodness; and progressive political commentary. But no solution arrived regarding the riddle of which insulin had been selected by the insurance company.

One friend, whose spouse is a pediatric endo, asked the spouse, “The insurer has to cover something, don’t they?” And the spouse replied with a frown and a shrug. Friends with insulin stockpiles offered to share. A Canadian friend said she’d hook me up. Another recommended acquiring insulin from the recently deceased. A friend who is a primary care provider said she’d been trying to solve the same riddle all day, with patients who’d received the letter. Another friend suggested perhaps the insurance company is planning to cover a new, generic insulin from Sanofi called Admelog. My day ended as it began, a queasy mystery.

The next day, I called the insurance company again. I was optimistic about Sanofi’s Admelog and/or a different call center representative solving the mystery. Will Admelog be covered? No. NovoLog? No. Apidra? No. Fiasp? No. Are you sure Humalog won’t be covered? The final answer was a curlicue: No insulins are listed for your plan because we have had a hard time finding any insulins that we can cover.

Still stumped, I googled the name of the doctor who sent the letter. Often in Rhode Island, we find we are just one—or zero!—degrees of separation from people we initially mistake for strangers. It turns out I do not know this person, but I do now know she chose a fresh, sporty, friendly-looking headshot, and resembles the ladies in my town who wake up at 5AM to go sculling on the cove. One side of her blazer’s collar flaps up in a breeze. Definitely not the Mar-a-Lago geezer I’d envisioned. Her corporate bio reveals she is also a diabetes expert: a member of the Leadership Board of the American Diabetes Association who “supports ADA programs, advocacy, education, and development efforts in Rhode Island and throughout the region.”

Because I was online continuously, gathering insulin acquisition advice and puzzling over how a woman with such great hair and diabetes connections could approve such a shitty letter, I noticed the IM come in as designed (i.e. immediately.) A friend who knows someone who works with the letter-sending doctor contacted me to see if I would be willing to speak with the doctor-adjacent person. My heart leapt. Yes, I would!

It turns out this doctor-adjacent person not only works at the insurance company, but also has Type 1 diabetes and is a Humalog user herself, so she got the same letter. She said when she read the letter, she brought it to her colleague—the doctor who sent it—and asked, “What does this even mean? What insulin will we cover?” The following is a list of the nice, sensible things this person told me: I agree, it’s a bad letter, and We are actually going to cover NovoLog, and This change might even save us all some money, depending on your deductible. She understood that I’d called customer service twice, and had been told (twice) that no insulin would be covered. I explained that, from my point of view, the problem was not with the call center, but with the letter, which should have included what she’d just told me: NovoLog would be covered, and might cost less for some users.

Now we have come to the end of my story. It might seem to have been about nothing. Big whoop: someone sent a sloppy letter. This caused confusion. The call center didn’t have access to accurate information. Some people will switch from Humalog to NovoLog. Other people, with other insurance plans, will switch from NovoLog to Humalog. Everyone will keep on having diabetes. But for me, this letter was a big whoop. It’s not just that a carelessly written letter led to hours of annoyance, and then fear, as I attempted to untangle its meaning. It’s also a renewed awareness that we are at the mercy of diabetes, with only a very fragile health care system as the buffer between us and it.

Katy Killilea

Katy Killilea lives in Rhode Island with her family. The younger of her sons was diagnosed with Type 1 diabetes in 2011 when he was 8 years old. Two years later she was diagnosed with Type 1 herself. Her older son is a test subject in an experimental trial for a drug that stops the progression of Type 1 diabetes. This son, her husband, and their dog remain (relatively) unaffected by diabetes. She writes the blog Bigfoot Child Have Diabetes.