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Tuesday, May 5, 2015

All about the numbers.

If you share my frustration please share this post with those that need to see it.

Dear Insurance Company,

I wish you could see what I see. I wish you could know how much work it requires to motivate an adult living with an eating disorder to trust enough to agree to enter a program.

Everything is against their entering treatment—taking time off from work if their job will even allow it, getting coverage for their kids, telling people they know when their eating disorder is often their own secret, and enduring the shame of acknowledging that they are actually struggling with this disease—the shame of feeling that they ought to be over this by now. And the shame that comes with not fitting into society’s skewed perspective of what someone with an eating disorder looks like—because even those of normal weight and BMI can live silently with an eating disorder.

Image what it’s like to then have your patient dumped from program. Sound harsh? Well that’s how it feels, both to them and to us as their providers. A mere 2 weeks in a residential program (following years living with their disorder) and they’re required to step down, told they don’t need to stay there any longer, that it will no longer be covered.  And the patient? She is not happy at all. That very reluctant patient is finally finding her voice and stating loud and clear that she desperately needs to remain there. Her ED thoughts are so loud that the controlled environment of resi is the only thing that is resulting in the positive outcomes observed at program. So she is discharged because she has done well.

The premature move to partial day program, PHP sets her up for failure. And because her behaviors return, she is again discharged. Yes, now released because she’s not doing well enough, without a plan to move her to the more appropriate higher level of care. Can you see the absurdity?

Some numbers matter

We certainly do need to look at numbers—but not necessarily the ones that insurers like you are assessing. Weight may tell less than most other measures. Believe it or not, a weight may be completely in the normal BMI range (or even high) and an individual may be struggling with an eating disorder.  This is anything but rare, I’ll tell you. And weight may change little as eating increases significantly as metabolic rate increases in patients with anorexia. Patterns of restrictive eating followed by binging and even purging may have little impact on weight, or may support weight gain. So focusing on this number is truly misdirected.

These numbers matter

How about the EDE-Q score which assesses eating behaviors and disordered thoughts? It’s a quantitative test to measure change in recovery. Pulse, particularly lying, sitting and standing—that’s a number worth assessing. And self- reported number of skipped meals? Or frequency of purges? Or binges? Or number of hours or compulsive exercise? And of course there’s caloric intake relative to need. These are numbers that may tell you something about a patient. These numbers are worth counting.

I realize there are not unlimited funds for care. But perhaps listening to the professionals who can really assess their eating disorder patients—aside from relying on simple weight and BMI—might save you more money in the long run. You’ll collect no premiums from our patients who lose their eating disorder battle.

14 comments:

  1. Feels all too familiar; like so many- you could be writing about me bc the story is the same. It's a terrible state - and then to be told your not 'sick enough' to deserve or warrant life saving care... Certainly doesn't make the fight any easier.

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    1. Finding your voice and advocating may help the frustration. Perhaps once the genetics are discovered and there's greater understanding that eating disorders are not the absurd things the public thinks they are, the medical and insurance communities will address them better.

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  2. Fully in agreement with this piece Lori…clear and powerfully delivered…to be SHARED absolutely. Sincerely empathizing with Anonymous' comment about being informed one is not 'sick enough' to 'merit' inpatient. I personally experienced this…and not once, but twice found myself restricting…hurting myself and those around me…even more to "make weight" to receive inpatient treatment. The BMI number as determinant for severity of illness must stop.

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  3. I have enough shame regarding being an "anorexic" who is not "skinny" the last thing I need is people who are supposedly professionals telling me I am fraud. I can do that all by myself. Thanks for a very "real" post.

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    1. Don't think for a minute that the people making these decisions are "eating disorder professionals" because they certainly are not!

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  4. I have long been puzzled by insurers lack of embrace of early detection and prompt, aggressive intervention given that the costs of medical complications of eating disorders. In discussing this with someone he shared that insurers approach this by assuming their insured will be with another insurer when the high dollar costs hit. Not only is this immoral, it's a false economy. Some other insurer will have done the same and what happens is tantamount to the "dance of the lemons" in public school education--you just trade problems. It's still ineffective in terms of cost. It literally costs more money in the long run not to treat people. ARGH!

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    1. I've heard this as well. Drives me crazy. It doesn't help that most workplaces don't offer a choice of plans, so competition between insurers often disappears at the individual level.

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  5. Thank you Lori. This is so important to us. This has been my life for a long time. In and out of treatment facilities and programs over and over again. Thank you for fighting for me personally as well as all the other sufferers who are desperately looking for well-deserved help. We deserve fair treatment in a dignified manner just like anyone else with a disease

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    1. Let's all do our part and be more vocal about these issues. It's the only way change will happen. Spread the word. Thanks for sharing your thoughts.

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  6. This is my story. I've had a 20 yr battle with bulimia. A year ago I sought treatment. My insurance discharged me from residential after 3 1/2 weeks. I was 'allowed' to step down to PHP but they only covered 2 1/2 weeks before I was again forced to step down to IOP. I pretty much fell on my face. I was not ready and relapsed while I was still in IOP. Insurance then saw this as a lack of motivation and discharged me from IOP with no option to return to a higher level of care. A year later I am worse than ever and I am still fighting with them to get them to pay for what little treatment they said they would cover. (They are refusing to pay altogether now.) Its been a nightmare and part of me wishes I had never gone in the first place. I WAS getting the help I needed but I guess the insurance company saw it differently.

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    1. It's so unfortunate. There is a great legal practice Kantor and Kantor, I believe, that specializes in cases like yours. They advocate for eating disorder patient specifically-- worth reaching out to see how they'd work.

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