Insurance: The Greatest Barrier to Recovery

Posted by on Jun 18, 2014

I wondered whether it was too early to write about this topic here, seeing as I’m still building, persuading, cajoling, and outright begging a following for this blog. But because this issue is so critical, I will probably end up writing about it again anyway (and again, and again, and again…).

Insurance coverage.

In the eating disorder world, I have yet to see a bigger obstacle to recovery.

That might sound hyperbolic, but I assure you it is the truth. Eating disorders are insidious, complex, deadly illnesses that are notoriously difficult to shake. As far as anorexia goes, an estimated 5-10% of anorexics will die within 10 years of contracting the illness, 18-20% will die within 20 years, and only 30-40% will ever fully recover. Bulimia and EDNOS are no less deadly. In general, eating disorders have the highest mortality rate of any mental illness. Moreover, these illnesses do not resolve on their own—left untreated, they will get worse.

Thankfully, treatment exists. This typically involves a team consisting of a therapist, nutritionist, physician, and possibly a psychiatrist to address the psychological, physical, and nutritional needs of eating disorder patients. In serious cases, patients require aggressive, systematic interventions that involve descending levels of care. Patients begin either on an inpatient unit or in a residential care facility, and then move down to partial hospitalization programs, intensive outpatient programs, and finally outpatient care.

However, treatment is prohibitively expensive—a single day of residential treatment can cost well over $1,000, and many patients require weeks or even months in these facilities before stepping down. All said and done, treatment can plunge patients or their families into hundreds of thousands of dollars in debt.

And most private insurance companies do not even come close to sufficient coverage.

insurance

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In her article “A Time to Heal: Eliminating Barriers to Coverage for Patients with Eating Disorders Under the Affordable Care Act,” law student Sarah Hewitt writes that insurance companies use several tactics to get around costs, for instance, by treating mental illnesses differently than physical illnesses and setting stringent criteria just to qualify for treatment. Many companies make decisions about which level of care they will cover based on the “medical necessity” for a patient’s treatment (a vague term that seems to draw the line somewhere around “not close enough to death”).

If they opt to cover any treatment at all, insurance companies typically limit the number of covered therapy sessions, days in treatment facilities, and appointments with nutritionists and psychiatrists. When I was in residential treatment, it was not uncommon for a woman to arrive at our facility only to be cut be by her insurance company a mere week, and sometimes just days, later. Her team would appeal the decision, but they almost never won.

If all of this is not bad enough, insurance representatives sometimes blatantly misinform patients about coverage (as Hewitt says, “either willfully or due to insufficient training”). This was the disheartening reality in my case. For an extremely stressful two weeks in January, my treatment team fought with my insurance company, Empire Blue Cross Blue Shield, to allow me to use a benefit called “transitional living” (a benefit that was already in my plan). This meant that Empire would cover program costs and meals, and I would pay for my room and board (not cheap, mind you). For some reason, Empire kept denying me this option. Losing hope, I called my case manager to advocate for myself and explain why I needed this care. The case manager not only denied that my treatment team asked to use that benefit, but very sweetly told me that my team had never recommended residential treatment at all.

(NOTE: I will write another post detailing the fight my team and I put up to get me into residential treatment—it’s quite the story.)

The Affordable Care Act has made strides in improving coverage for mental health services, but there remain gaping loopholes when it comes to eating disorders—the deadliest of all psychiatric illnesses—and insurance companies are experts at finding and using them.

These companies have vastly too much say in what are literally life and death decisions. Even now, every woman in my current program fears the words “insurance review”—the day her team needs to ask insurance for more days in treatment—because this means that the future of her recovery hangs in the balance. Her team will make every possible argument in her favor, emphasizing the importance of seeing treatment through to the end, yet these recommendations seem to fall on deaf ears. Decisions are instead made based on whether a patient is in imminent physical danger. And this assessment is based not on clinical observations and expert opinions, but rather, on pure numbers—whether a patient is at a dangerously low weight, or whether she is just slightly underweight or even at a healthy weight.

In the end, the majority of the women who leave our treatment program are discharged not because they have made any significant steps toward recovery, but because their insurance companies cut them off. Some of these women promptly relapse and wind up right back in treatment (which, I imagine, hardly saves costs on the insurance company’s part).

And I see this happen over, and over, and over again.

How are we supposed to break free from our obsession with weight and numbers if that is what our benefactors exclusively focus on? How are we supposed to admit that we are sick and need help (which many of us don’t admit) if these authorities are telling us precisely the opposite? How are we supposed to recover if we are not even given a chance?

The insurance coverage situation needs to change, and it needs to change now.


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2 Comments

  1. I am another of a 16 yr old with EDNOS. She has an anorexic component and a binge component to her disorder. Never mind years of anxiety, depression, self-harm, suicidal ideations, inability to be in public school or successful in homeschool. It wasn’t unti 2 yrs in DBT and individual therapy did the psychiatrist have an aha moment. My daughter who is very over weight (morbidly obese) lost 50 lbs. We had no idea she had an eating disorder. There was talk of some emotional eating but it wasn’t until my daughter admitted to extreme restricting and walking did anyone realize that there was an eating disorder at play.. My daughter admitted to having this ED since she was 8 hrs old with memories at 5 yrs old of feeling fat because she was a bit bigger than hits her age. I don’t want her to have an ED but I’m finally hopeful that it is, like the psychiatrist now believes, that the ED is driving other symptoms. If we can recover from the ED she will presumably get to a healthy weight and no longer struggle with suicidal ideations, depression, etc. They admitted her to an ED center in Oklahoma 4 hours from home. Because we don’t have residential coverage they put her in a PHP without parent meaning she would spend the night like the other girls but I would pay her overnight fee. . Our insurance company decided after 12,measly days that she was ready for an IOP. How can anyone who struggled with an ED for roughly 8 years undiagnosed be ready to step down after 12 days?’ Thank you very much BCBS! Within weeks of being in the IOP they recommended a higher level of care. We got her into a local PHP where she came home at night. After a week this team was recommending a higher level of care because my daughter was not improving and reporting suicidal and self harm urges. In fact, they admitting her to a local psychiatric hospital to regulate her and then the plan was once regulated to either continue with PHP or get a higher level of care. This psychiatric hospital was so triggering that my daughter couldn’t eat. The adolescent population none of whom had eating disorders and were in for other problems talked about gross fat people and all kinds of horrible things. My husband and I were not getting the reassurances we need from the staff and after 48 + hours called to speak to the psychiatrist on call who could barely speak English. We voiced our concerns and wanted to know if this was doing more harm than good. He called the psychiatrist who admitted her who knows her better and told us that we could pick her up. They discharged her early. Big mistake. We wee told upon discharge to see her ED psychiatrist who gave the discharge order, on Monday. I called the PHP program Monday before heading over there. They said to just take the day off and that they would call to reathorize my daughter back into treatment. Days went by. I couldn’t get any answers. Finally, the folks at the PHP program said that we would have to call for a new assessmentt! The place they think should should be is $260 per night for the overnight fee. I’ve told them over and over that we cannot afford that. The place in OK was only $54 per night. The facility in Oklahoma won’t even take her back unless BCBS will give a written commitment of at least 30 days. BCBS is refusing to commit to anything in writing. Now, I’m trying to find a facility for my daughter that is in-network, with an affordable overnight fee since my insurance won’t pay for i that part. We have been home from the psychiatric hospital for 10 days with no care. The entire ED industry is a mess. The insurance companies are horrible and I’ve had terrible luck with the ED facilities as well. At every single ED facility we e been in, the recommend a higher level of care just before we have a chance to our family counseling. The right hand doesn’t know what the left hand is doing in my humble opinion at these facilities. If BCBS had given my daughter time in OK we could have had 2 months of the inpatient treatment she needs. We are back to square one. Starting all over. The over weight girls with EDNOS that include binging and who are over weight and are not physically dying (but are mentally dying) are a grossly underserved sect of the ED population. BCBS says their hands are tied based on criteria. Well untie them!! I’m afraid I may have to lawyer up.

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  2. I gave you my wrong email addy. Please see the corrected email address.

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