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

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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.

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Rob BagwellLucia MayaSharon Kabbes ChrismanDaisyLynn Recent comment authors
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Rob Bagwell
Rob Bagwell

I just went through the simiiar thing. I was laid off, looking for work, and have not only lost the health insurance but greeted with the I will assume corporate greed of these manufacturers. When I was diagnsed in 1969, I was of course on animal insulin. Great ! The the “synthetics” came out and they said they were going to be better. I did not believe them and still do not. They said it would be cheaper. At that time insulin was under $20 per bottle. Then the switch to humalog / novolog and the “pump” Stress not supposed… Read more »

Lucia Maya
Lucia Maya

As I read this I laughed a few times and wondered who the delightful writer was, then saw your bio and wasn’t surprised that it’s you, my favorite diabetes blogger! So sorry that this ridiculous system is still taking our time and energy, but happy to find your writing here!

Sharon Kabbes Chrisman

I am often consumed with frustration over people’s lack of communication skills. They “should” have some protocol put in place that has others proof letters to customers for things like fear-inducing rhetoric! “Hey, does this make me sound like a jerk? Surely people will know we aren’t going to hang them out to dry, right?” I am very happy to read about your option, and hope they respond to it well. (Sorry it’s not Fiasp.) Good read, KK.

Daisy
Daisy

We are in RI too, received the same nonsensical letter. Called Blue Cross immediately, received a very uncaring, unspupportive reply. All humalog products. I immediately turned to the web and found insurance companies make deals with insulin makers and negotiate prices all the time. My sons been type 1 for 4 years this year and it’s the first id heard of it. There are no approved generics, so novalog must have been the alternative. Did all the research and they are pretty much the same. I felt a little better and was able to sleep that night. I called in… Read more »

Lynn
Lynn

This week I have a conference call with my HMO who replaced Novolog with Humalog, and refused to allow the tier to be lowered on the Novolog. Apidra is also not favored in the plan. Turns out, neither is tier lowering. The plan I selected apparently provides no room for such a change. So.the problem is, I have a severe Humalog allergy and a very small income. Therefore, what choices do I have? to now have to meet with a grievance board who rejected my request in the first round is a sad sad thing. To further complicate things, I… Read more »

KMG
KMG

Wow…but not surprising. I have seen a few letters from the insurance companies similar to this. Shouldn’t T1D & their doctors select what insulin and or meters work best for them to keep them healthy? It is very frustrating Insurance Companies choose to value $$ or health and decide to mange a T1D disease (as we all know everyone T1D is exactly the same!!)with meds or meters they want to cover based on what company “greases” the insurance companies pockets with money or whatever. Is it more important to save lives or to just look at the $$. So tired… Read more »

Tulip
Tulip

I have been waiting 5 weeks while my insurance is “researching” why insulin syringes aren’t covered like the rest of my plan 80/20. Happened last year and it was coded wrong, took 3 weeks to fix.They never call and give me an update, so frustrating. I don’t know why it takes so long seems like a simple answer.

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