Stigma.

It’s real and it impacts all of us in the mental health community.

This is not new information, I’m sure, but I don’t think a reminder would hurt. And I’m feeling particularly irate after the week I’ve just had.

I live in New York City and work at a private university, which means I get health benefits through my employer. Not being much of a gambler, I selected the best benefits plan my company offered. I didn’t know then that within two years I would be relying on this insurance plan as I fought for my life. Though even if I’d known, I still would have chosen this particular plan because it was one of “the best.”

Blue Cross Blue ShieldBut when I entered treatment for my long history with anorexia, my plan through my insurance company — Blue Cross Blue Shield — proved to be as insidious and harmful as the eating disorder it was paying to treat.

I won’t go into every detail about my constant battle with Blue Cross Blue Shield (you can read about my initial fight to get inpatient treatment on my blog). I only bring it up now because this week I faced yet another battle with them.

But this time I won.

The Fight with Blue Cross Blue Shield

Last Thursday, a few hours before I was supposed to go to my intensive outpatient program (IOP), my therapist called to inform me that Blue Cross Blue Shield had denied any further treatment at the IOP level. The decision was going to a “doc to doc” session, in which the consulting psychiatrist at Blue Cross Blue Shield would speak with one of my program’s doctoral-level therapists. My whole body went cold then broke into a sweat. This can’t be happening. Not again.

It took the Blue Cross Blue Shield doc all of 15 minutes to determine that it was no longer medically necessary for me to take part in IOP, thus I should move to a lower level of care. The anger, frustration, and injustice of the last ten months welled up in me as I realized that, yet again, some anonymous and indifferent representative at my insurance company was making a baseless decision about my healthcare.

I researched what Blue Cross Blue Shield considered “medical necessity” to receive treatment at the IOP level of care, as well as the American Psychiatric Association’s guidelines, and, armed with these, I called my case manager with one question: Why have I been dropped from this level of treatment when I meet the criteria for medical necessity? Every time I asked this question, she cited one fact: I had been at a stable weight for the last six weeks, which qualified me for strictly outpatient care. I pointed out to her several times that at the IOP level weight is not a criterion for medical necessity. If my weight were unstable or dangerously low, then I would not be at the IOP level — I would be at a higher level of care, such as partial hospitalization or residential.

Still not able to let go of the weight argument, she pointed out that if I were truly symptomatic, then this would be showing up on the scale in the form of weight loss. I reminded her that that is blatantly false. The National Institute of Mental Health confirms that some eating disorder patients maintain weights that are considered “healthy” despite the presence of symptoms. Weight is not a sufficient indication of eating disorder relapse or remission.

Regardless, she said, there was nothing she could do — the decision was in the doctors’ hands.

Friday. A second appeal was scheduled for 3:30 p.m. The Blue Cross Blue Shield doctor didn’t call my therapist until 4:50 p.m., and when he did, it took him roughly five minutes to glance at my charts and decide that I was indeed stable enough to move down to outpatient treatment. (Conveniently, by the time I called to protest, everyone at Blue Cross Blue Shield had left for the day.)

Monday. I called my case manager again and demanded to speak to her supervisor. The supervisor was moderately empathetic, but said there was nothing she could do. I had to speak with the grievances and appeals department instead.

Tuesday. I get a call from Dan, the senior behavioral health appeal coordinator. He informed me that I could make another appeal, and if this were denied then I would had to go to New York State to settle the matter. To do this, I would need to write a letter detailing why I disagreed with the denial, then send it directly to him.

In order to craft my own appeal, I needed to see the Blue Cross Blue Shield doctors’ notes explaining why they denied my case. I knew these would be difficult to see, but I didn’t anticipate just how difficult. Everything was there in black and white. My history, my presenting issues, my interpersonal struggles — all of it stated with a shameful matter-of-factness. Even worse, the notes stated my weight, charting every pound lost or gained since I’d started treatment. The last time I’d seen my weight was February, when I first arrived at residential treatment. So, naturally, the current number was rather shocking.

I managed to write the letter, explaining that the majority of what these doctors said was either exaggerated or blatantly false, and that both of them continued to cite my weight, even though weight is not a criterion for medical necessity at the IOP level of care. I reminded them that denying me treatment when I do, in fact, meet medical necessity criteria by their standards would be a violation of federal parity laws.

Wednesday. An email arrived saying that the denial had been upheld, and at this point I would have to take my appeal to the State of New York. Even worse, the third doctor’s explanations for denial were no different than the last doctor’s explanations. Had they even read my letter striking down those explanations?

I was furious. I called Dan, who told me that he couldn’t answer any specifics about my case — he was at the head of the process, but he didn’t have any role in the decision-making. He gave me the name of the medical director Dr. Steven Korn and said he would have him call me.

I was feeling desperate. It seemed I had nothing to lose. So I sent an email to Dr. Steven Korn, and CC’d someone from the New York State Attorney General’s office (it was a random email address I found on their website), someone from the Community Service Society of New York (I actually have no idea who they are — but they do health advocacy, and I needed this email to be flashy), and Dan. In it, I wrote about everything happened and demanded that he call me to explain Blue Cross Blue Shield’s decision.

Within an hour, I received the call. To my surprise, Dr. Korn was rather cordial and patient. He listened as I told him how I had been cut off without any notice and how much I had been struggling this week without my treatment team.

He chuckled a bit and said, “You are the most persistent client I’ve ever seen. I’ve never seen someone work this hard.” Then, he finally asked the question that should have been asked of me last Thursday by my case manager: “What do you need?”

“I need to go back to treatment,” I said.

He said all right, he would reverse the decisions.

And just like that, I was back in treatment the very next night.

What Are We Going to Do About Stigma?

In the end, I got (mostly) what I needed: I was granted 10 more days in treatment. But it came at a high cost. For the week that I was without treatment, I battled daily with my eating disorder. I had to review my own case history in order to build my case, exposing myself to details that were quite detrimental to my psychological wellbeing. And moreover, rather than focusing all my energy on getting better, I spent a full week explaining vociferously to a spate of insurance people why I was, in fact, very sick.

Now, how does this relate to all of you in Canada?

Admittedly, I don’t know whether these injustices are as rampant in your healthcare system. But what I do know is that this situation, no matter where it occurs, is symptomatic of the stigma that still clings to eating disorders. Even though we have come far in understanding that they are not about vain attempts to look thin, and even though we now know they are biologically-based illnesses that have far more to do with your genes than your “attitude,” eating disorders — like many mental illnesses — are still regarded as less deserving of our attention and concern. Eating disorder patients continue to be treated as second-class citizens, whether it is by emergency room doctors who loathe to treat someone who has “done this to themselves,” or by friends and family who ask why we can’t “just get over it already,” or by insurance providers who withdraw potentially life-saving treatments (that are proven to work) just to save a few dollars in the short term.

We’ve come far, but we have much farther to go. Misconceptions about eating disorders, unchecked stigma, and blatant disregard for human wellbeing are keeping eating disorder patients sick. Even worse, by not treating this treatable illness, approximately 23 people are dying every day of an eating disorder.

So what are we going to do about stigma? How are you going to speak out today?

#AfterAnorexia

About Joanna Kay

Joanna Kay is a writer in New York City and is recovering from an eating disorder. She is the author of The Middle Ground, a blog that deals with issues that impact people midway through the recovery process. You can follow Joanna on Facebook and Twitter, and additionally you can check out her blog The Middle Ground. Follow her HMC posts on Twitter with #AfterAnorexia

  • Jenn O.

    I have engaged in a David and Goliath battle with an insurer. You are a rock star to have done this one your own. It is insane.

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