Type 1 Diabetes vs Health Insurance

Recently, when doing an end-of-year bill-paying sweep, I realized we had won a fight with our health insurance over paying for Bisi’s diabetes care. The fight had been going on for so long that I had pushed it to the back of my mind and forgotten about it. Hearing about other people’s fights with their health insurance is not that interesting. But I suspect many people with T1D in their families have waged or will wage similar battles. So I’d like to pass along what worked for us.

It all started with the pump education appointments required when Bisi selected and started on the Omnipod. The endocrinology program at the pediatric hospital where she’s seen requires everyone starting on a pump to go to a class to check out the different pumps, and then to 3 start up appointments to learn how to use the pump (one of them a required visit with a nutritionist). Our insurance covered the Omnipod, so I was surprised and confused when we started getting bills for these four appointments—adding up to $3,000. (Getting all these unexpected bills around Christmas-time was an unwelcome surprise.) What I learned from multiple calls to my husband’s company benefits administrator, our insurance company, the hospital billing department, and her endocrinologist’s office, and from reading through the text of our insurance policy, was that these appointments (in fact, all of Bisi’s diabetes appointments with her nurse educator) had been coded as “nutritional counseling”—and my husband’s insurance only covered three nutritional counseling visits a year

Here’s part of what I wrote in my first appeal, which was rejected.

“These three appointments [I focused on the pump start up appointments] were essential training sessions where Bisi’s diabetes nurse educator in the endocrine department at XXX showed us how to use a powerful medical device we were completely unfamiliar with. Thankfully, XXX covers the cost of our daughter’s Omnipod pumps and accompanying Personal Diabetes Manager—but it makes no sense that you wouldn’t also cover the training required for us to properly use the device. It’s like covering the cost of a pacemaker without covering the cost of setting it up.

Knowing how to use an insulin pump correctly can literally be a matter of life or death—it is not a matter of nutrition. If we, through lack of training, give our daughter too much insulin with the pump, she could die; or, if we’re lucky, end up in the hospital in a diabetic coma. If we’re not trained how to deal with pump failures, she could end up in the hospital with diabetic ketoacidosis caused by high blood sugar. For these reasons, as an insurance company you should be encouraging people to get trained to use an insulin pump, rather than denying them coverage for those appointments….

These training appointments are a one-time investment and expense for the insurance company—not something to be lumped into the small number of appointments covered each year under the aegis of nutritional counseling. (Part of me wonders if whoever decided that diabetes health education for type 1 diabetics should fall under the category of nutritional counseling doesn’t understand that type 1 diabetes—unlike type 2—is an autoimmune disease.)

After this attempt was rejected, I was told by my insurance that I could file another appeal. At this point, I dug into our plan and into protections offered by the Affordable Care Act to bolster my case. I wrote back to Mark’s insurance company quoting elements of the plan:

“’Essential Health Benefits are defined by federal law’; ‘Essential Health Benefits provided under this Plan are not subject to lifetime or annual dollar maximums.’ As stated in your plan, Essential Health Benefits include ‘Chronic disease management and pediatric services.’ Type 1 diabetes is a chronic disease, so according to the language in this Summary of Benefits, care related to treatment of our daughter’s disease should be covered.”

I asked Bisi’s endocrinologist to send a letter to our insurance on our behalf, which said, in part:

“It has come to my attention that these visits are not being covered by your plan as they are being lumped in with her nutritional counseling benefits for the year. These visits are absolutely medically necessary and are not nutritional counseling. It makes no sense to lump them together nor does it make sense to limit the number of visits. Bisi was approved to start an insulin pump and these visits are 100% essential to make sure that her transition to insulin pump therapy occurred safely These extra visits occur only during the initial implementation of pump therapy. Can you please reconsider covering these visits?”

From talking to the health insurance, my husband’s company’s health insurance liaison, and the hospital billing department (each of whom blamed the other for the fact that the appointments weren’t covered, leaving us to foot the bill), I learned that the hospital had coded these appointments as pump education, and that our insurance lumped pump education as part of nutritional education. Yet, when I referenced our plan, I saw that:

“On page 32 of the Benefits booklet for our plan, it’s written that covered benefits for diabetes include: ‘Diabetes Equipment and outpatient self-management training and education, including nutritional therapy for individuals with insulin-dependent diabetes, insulin-using diabetes, gestational diabetes, and non-insulin using diabetes as prescribed by the Physician.’”

I continued in my letter:

“In this part of the plan, it seems clear that nutritional therapy falls under the wider umbrella of diabetes treatment. Yet for the purposes of our claim, nutritional benefits are being interpreted in exactly the opposite way—that diabetes care falls under the umbrella of nutritional benefits. This makes no sense for a chronic auto-immune disease like type 1 diabetes, which is in no way caused by how or what someone eats.

We believe that our coverage is being limited in an unfair way, which seems to us to directly conflict both with what is written in our plan and with the mandate of the Essential Health Benefits portion of the Affordable Care Act to cover chronic conditions.”

When I asked my husband’s health insurance liaison about why these appointments weren’t covered under the Essential Health Benefits portion of our family’s health care plan I got this bit of double speak:

“Nutritional counseling is covered up to 3 visits with no diagnosis restrictions, which includes diabetic education. Nutritional counseling does not fall into the EH benefit.”

And I responded:

“We are not arguing that nutritional counseling falls under the EH Benefit. However, we are arguing that type 1 diabetes, a chronic disease, falls under the EH Benefit.”

And I asked the billing department at our hospital to refrain from sending the bills to a collections agency, since we were still disputing them (the billing department told me to call back every month to make sure the bills didn’t get released to a bill collector). I also asked if perhaps the appointments could be coded differently, under the “insulin pump initiation code, instruction in initial use of pump” (which my husband found at findacode.com), because I thought this might get around the nutritional counseling limit, and, after all, that code accurately described what went on at the pump appointments. But that effort didn’t go anywhere.

This appeal, too, was rejected. At this point I considered giving up. I’d spent hours of complete aggravation trying to make my point and unravel this insurance knot, and I was sick of it. But then I decided I should file another appeal, just BECAUSE I’d already spent so much time on this. I didn’t want to just give up (partly because I knew that giving up was exactly what the insurance company was hoping I would do).

So I sent a short letter as part of a “second-level appeal,” in which I wrote, in part:

“These were not nutritional visits; they were training visits essential for teaching us how to use a medical device that can cause great harm if used incorrectly. I feel that XXXX/XXXX’s coverage of only three nutritional counseling/diabetes education visits a year shows a lack of understanding that there are fundamental differences between our daughter’s disease, type 1 diabetes—an auto-immune disease which has made her permanently insulin-dependent—and type 2 diabetes—which is indeed affected by nutrition. Thank you very much for your help and attention to this matter.”

Over the next couple of months, I noticed that the bills from the hospital stopped coming. Then, in digging through an old pile of mail, I found a letter saying we’d won the appeal. Woo hoo!!

I’m quoting it in part here, because I suspect others have or will go through the same rigmarole, and I want you to be armed with a good argument.

The letter quoted, as I had, the Essential Health Benefits provided under the plan, benefits mandated by the Patient Protection and Affordable Care Act of 2010. “According to the letter from Dr. XXX, these visits are not nutritional counseling for diabetes but are education self-training for the medical device required to treat your chronic condition, type 1 diabetes. Since this treatment is part of the management for a chronic condition, the annual maximum of three nutritional counseling sessions would not apply.”

I’m not sure exactly what worked, but here is my advice to anyone facing a similar situation:

1. Appeal, appeal, appeal, and then appeal again. Follow the appeals process through to its end, and see who blinks first.
2. Comb through your benefits package to see if you can find arguments to bolster your case. Don’t expect anyone else, including your employer’s human resources office, to help you come up with ammunition.
3. Ask your doctor to write a letter.
4. Call the billing department to see if the can offer advice on how to approach the insurance company (after all, they want the bill paid ASAP), and to put a hold on your account for as long as the fight continues.

As anyone on this site knows, living with and treating type 1 diabetes is expensive, aggravating, and time consuming. The last thing anyone touched by this disease needs is more expense, aggravation, and time spent fighting it. I’d rather be using my brain power and time helping my daughter live as well as she can with this disease, not arguing with a health insurance company over her care.

Katie Bacon

Katie Bacon is a writer and editor based in Boston. Her daughter, Bisi, was diagnosed with type 1 diabetes in August, 2012, when she was six. Katie worked as an editor at The Atlantic, and her writing has appeared in The New York Times, The Boston Globe, and other publications. Katie and her husband, Mark, have two children—Bisi and her older brother, Jamie.

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Katie Bacon

Katie Bacon is a writer and editor based in Boston. Her daughter, Bisi, was diagnosed with type 1 diabetes in August, 2012, when she was six. Katie worked as an editor at The Atlantic, and her writing has appeared in The New York Times, The Boston Globe, and other publications. Katie and her husband, Mark, have two children—Bisi and her older brother, Jamie.