Part 2 — Insurance: The Greatest Barrier to Recovery

If I eat and gain weight, will I be considered “too healthy”? If I don’t eat and lose weight, will I be considered “noncompliant”?

One reason why eating disorders are so difficult to treat is because, in addition to addressing symptoms, you must first convince the patient that he or she is actually sick.

She might deny that she has any problem whatsoever with her eating habits and other behaviors. Or, even if she admits to struggling, she might insist that she is nowhere near as sick (i.e., as thin) as other patients.

So, imagine the ED patient’s confusion and distress when, after weeks or months of being convinced by trusted professionals and supporters that she needs (and deserves) help, another authority responds with her greatest anxiety: You’re not sick enough.

That is the message I have received time and time again from my insurance company.

Last December, I began treatment in a partial hospitalization program (PHP), or day program. Monday through Friday, from 8:30 a.m. until 2:00 p.m., I joined a dozen other women for two meals, meal support therapy, individual and group therapy, nutritional counseling, and psychiatric care. My insurance company, Empire Blue Cross Blue Shield, covered my eight-week stay in full, leaving me with just a $10 copay—which was crucial, because I had taken a medical leave from work to seek treatment.

But I didn’t get better. Eleven years of battling anorexia had grown a powerful enemy, and five days of treatment per week couldn’t shake it. By 2:00 every day I was back in the throes of the disorder, fighting with it about whether I would complete the third meal on my own. After weeks of struggling, my treatment team recommended I undergo a month of 24/7 care in a residential facility.

I had been informed from the start of PHP that my insurance plan does not cover residential care. Luckily, my team discovered I was eligible for a benefit known as DTLA, or transitional living. This meant that Empire would continue paying for the costs of a day program while I would pay for my room and board. In other words, despite the fact that I was moving to a higher level of care, Empire would not have to pay anything additional.

I agreed to go to residential. I packed my bags. My husband and I talked for days about how we would manage the separation.

And then insurance denied the request.

For two harrowing weeks, my team exhausted their appeals trying to convince Empire that I was too sick to remain in day treatment. Not only did Empire refuse residential, but they also decided that I no longer qualified for PHP treatment:

“We cannot approve the request for continued partial hospital care as of January 15, 2014. The information your provider gave us does not show that this is medically necessary. You were admitted due to low weight at XXX pounds for your height XXX. Now your weight is still XXX pounds. You are eating some of your recommended meals. You are not likely to need hospital care soon. You can also be treated with less intensive outpatient treatment. We based this decision on the health plan guideline.”

— letter from Empire Blue Cross Blue Shield, January 2014

(To my horror, my weight was actually cited. I had not known my weight since the beginning of treatment in an attempt to break my obsession with the number on the scale. And I was so controlled by the ED at the time that, when I opened the letter, I was more upset by that number than being denied treatment.)

However, according to Empire, my lack of weight gain wasn’t the only reason why both residential and PHP treatment were unwarranted:

• I was uneasy about taking an antidepressant and was still discussing the pros and cons with my psychiatrist—Empire called this “medication noncompliance.”
• I was struggling to open up about my eating disorder to my family, especially to my mother—Empire considered this an unwillingness to involve family support.
• At my lowest points, I relied on alcohol to quiet the ED voice and get me through a meal—Empire decided that, in order to continue treatment, I would have to attend Alcoholics Anonymous meetings.

But I was desperate. So I filled my prescription, called my mother to tell her I needed residential treatment (an extraordinarily difficult conversation), and I went to AA.

By the end of the two weeks, Empire still hadn’t budged. Meanwhile, my therapist was becoming desperate. She recommended that, if the requests for both residential and PHP were denied once and for all, I should allow myself to be discharged, wait two weeks, and then schedule an evaluation to start the treatment process anew. By then, I would be “sick enough”—and maybe even sicker—to be referred to residential treatment right off the bat.

It was the lowest of low points. We were so desperate that we were actually willing to let me go spend two weeks with my eating disorder just to convince my insurance company of its severity. And my ED was jumping at the opportunity to show everyone how extreme we could be when left to our own devices.

At the eleventh hour, a high-ranking administrator in the program called my case manager to insist that I had the DTLA benefit.

Suddenly the answer became, “Sure, no problem.”

Simple as that.

Battling insurance proved to be one of the most difficult aspects of treatment. Those two weeks caused profound stress and fear as we watched the hope for recovery grow increasingly dimmer. It also intensified my ED behaviors. I remember sitting at breakfast one morning, staring at a half-eaten bowl of oatmeal, and crying to the therapist at the meal that I didn’t know what to do—if I ate it and gained weight, would I be considered “too healthy”? If I didn’t eat and lost weight, would I be considered “unmotivated” or “noncompliant”?

How could one person have so much power over my healthcare as to potentially disrupt the entire course of my recovery? What if I hadn’t had an extremely dedicated and tenacious treatment team? Would I still be obsessing about food and calories, gradually fading away until the disorder consumed me?

How many others have been denied treatment and have paid for that decision with their lives?

In the end, I was fortunate. Residential treatment was one of the most valuable experiences of my life—it gave me the time and space to focus on nothing else besides getting myself physically, mentally, and emotionally healthy.

That is, until my insurance company cut me off 21 days into treatment.

Update:

This post was recently published in two parts on the National Eating Disorder Information Centre (NEDIC) of Canada’s blog. Click here to read part 1, and click here to read part 2.

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