I know this post is kinda tl;dr but do me a favor and at least skim it; at least share the link.
The Eating Disorder Situation
The Eating Disorder Situation
The number of eating disorders looks to be climbing, so for every twenty- or thirty-something who used to be a teen with disordered eating behaviors and who now boasts a longstanding eating disorder, at least pieces of the below post are true.
As eating disorder number keep climbing, and as money and budgets keep becoming more pitched issues, becoming tighter, the specific experiences I talk about below are going to become even more widespread than they are now. This is important for me to work out on pixelated "paper" for myself, but it's also important to put out there because it's hardly just true for me. It's true for untold numbers of people, and those numbers are growing.
I've been doing pretty poorly over the last month. It's not that my weight is at alarming levels, though it's down. It's that something in my head has gone ragged. The hard truth is that I could use a higher level of treatment right now, but that it isn't in the cards because of money. My health insurance plan doesn't cover anything but the most rudimentary coverage, and that not specified for eating disorders in any way. They pay for my psychiatric medication, which is truly a non-essential part of eating disorder treatment, and that's it. That's my reality right now. I need more, and I can't get more, and without more, I don't know what to do.
Before I started seeing my current therapist, I called New York's Renfrew Center location to schedule an intake and have them look into my insurance benefits relevant to their services. My insurance plan covers something like 30 psychiatry (not social worker, not psychologist, not counselor, not group therapy -- psychiatry) visits per year, and that's it as far as my mental health coverage goes.
Anyone who knows anything about eating disorders (or personality disorders, or a whole host of other mental health issues) knows that while psychiatry might get the ball rolling, drugs don't put the eating disordered brain back to order.
Eating disorders (or personality disorders, or a whole host of other mental health issues) are not bipolar disorder, for instance, or schizophrenia. Bipolar/schizophrenia can and do benefit from talk/behavioral therapy, but primarily require psychopharmacological treatment. Eating disorders seem to be the reverse of that.
SSRI's and SNRI's have shown some promise in helping reduce symptoms in bulimia or purgative type anorexia (as have some anticonvulsants with popular off-label use as mood stabilizers, e.g. Topamax, Lamictal). Studies show that even after recovery, bulimics' levels of serotonin don't recover to average levels, so SSRI's in particular are thought to help there. (Whether the levels were low before the onset of the eating disorder has so far been harder to track.)
I'm on an SSRI (Lexapro), and my insurance covers 50% of its monthly cost (after an annual Rx deductible). My anxiety is usually at tolerable levels, except for when I end up sobbing in the shower or hyperventilating on the bedroom floor. The depressive moods that are tied to my anxiety respond a lot better to the Lexapro than does the anxiety itself, but the anxiety difference on vs. off the SSRI is enough to keep me taking it. And anyone who wants to comment or email to me that I'm playing into Big Pharma's hands and poisoning my body and I could really just do hours of yoga a day and cut out caffeine and drink kambucha or whatever? You can go right ahead and kiss my ass. This is a tool that I know to be helpful to me, so I will use it.
However, as I say above, drugs are a tiny part of an eating disorder treatment plan (and certainly not universal to ED treatment plans). That necessarily means that psychiatry is not the be-all end-all in an eating disorder treatment plan.
But psychiatry (fewer than three visits per month) is what my insurance plan covers. (And we are not getting into my deductible and my co-insurance. Oh no we are not.) And psychiatry alone is not what works. What works in eating disorders is early, relentless, continuing treatment. At least that's what the data now shows.
Apologies for drawing dramatic and not entirely accurate parallels, but you could compare eating disorder treatment to diabetes treatment. Catch it early, monitor it closely, and you stand a chance of reversing its course. Throw the minimum scraps of resources at it, and really you might as well not be doing anything. So my family friend has the resources and time to monitor her pre-diabetic condition until it becomes Type II diabetes. Once she reaches her diabetes diagnosis, she has the resources to purchase and maintain a CGM.
This small study actually suggests that CBT can improve the 5-HT system functions in bulimia patients, and that even though there aren't neurochemical effects apparent in anorexic patients (restricting type or purging type), the psychological aspects of the diseases show marked improvement over this 20-week in-patient course.
But eating disorders are notoriously frustrating, because we still don't really know what to do about them. Or how to define them. Or how to prevent them. Or much of anything, other than that they're multiplying (or at least their identification is). We make stabs in the dark, hoping to hit a major artery. It seems that in some cases (depending on the study it's as low at 25% or as high as 65%), repeated stabbing of the disorder -- in other words, just keeping at it, and with bigger knives if necessary -- will eventually bleed it out, and keep it bled.
I'm paying for my therapist out of pocket, but paying a weekly LCSW fee and paying for intensive outpatient treatment (IOP) or partial hospitalization treatment are two different things entirely. When I went into the partial hospitalization program (PHP) at the Atlanta Center for Eating Disorders, my insurance also didn't cover that treatment. But it was 2003 and economic times were a bit different, weren't they? My parents paid out of pocket for my treatment that summer, and while I imagine it wasn't terribly fun for them to do, it didn't impact our day to day lives, financially.
I have a lot of guilt over that treatment, and over the fact that, here I am again, at my lowest weight since 2003, still eating disordered, despite all the money my parents shelled out, all the time they spent in family therapy with me learning about eating disorders and how to communicate with me, how to care in a way that gives me what I need. And yet, I still can't get it right. Here I am again.
Only this time, PHP or IOP aren't options. The reality is that they are too expensive. In 2003, in a booming economy, with my parents' financial standing behind me, the expense wasn't right there and then an issue. Since the economy went to hell in 2007/2008, I worry about what that treatment stint may have cost them that they could be using right now to be more comfortable. Don't get me wrong -- they have their house, they have their cars, they have their Whole Foods groceries and their California wines and their beach vacations and the other trappings of middle-aged middle-class life.
But I can't help wondering, what was the point? What was the point of their spending all that money in 2003 only to have me end up back in a place, in 2011, where I need to be in a similar treatment environment, but no longer have access to one?
The guilt-based part of my brain tells me to give up, that I don't deserve treatment, that if I really wanted to get better, I'd just do it.
Then the reality-based part of my brain kicks in and I think again of my diabetes example. Eating disorders are illnesses -- mental illnesses. Diabetes is a physical illness, and while diabetes care is certainly anything but unstratified or judgement-free, no one's going to tell a diabetic to whip their damn pancreas in shape. They might get all judgey-McJudgersons about every step that diabetic takes or every non-protein-based morsel they put in their mouth, but no one is going to seriously argue that a diabetic can will their pancreas into working again, and insurance coverage is not going to reflect such a thing. Testing strips and insulin and even, depending on the plan, CGM's and accoutrements, are covered.
So I'm not sure why I should assume I ought to be capable of just whipping my brain or my psyche into shape. I need treatment, I need an accessible system, I need affordable options. In the absence of better knowledge on what really works for eating disorders, I need -- and hell, I deserve -- access to the things that we know do work, at least for some people, at least some of the time.
I don't have that access. I don't have the $30,000 for a month of in-patient treatment. (Usual minimum stay is 8 weeks.) I don't have the $2,500 for a week of PHP. (Usual minimum treatment is 4-12 weeks.) Right now, I don't even really have the wiggle room to add a weekly nutritionist visit to my weekly therapy. (Some insurance plans cover nutritionist visits; mine does not.)
You know what I have access to? Lexapro. My insurance plan is happy to pay for my Lexapro. (And don't get me wrong in the least -- I'm glad it is.) No thanks to BlueCross BlueSheild, I also have access to psychotherapy. That's mostly thanks to my own good fortune, and indirectly to my parents, who paid for my treatment at NYC's Renfrew location in 2004-2006, where I met this therapist, whose hourly rates are somewhere south of the Manhattan average.
My reality is that Lexapro is not going to fix me. The CBT workbook and the DBT workbook and the meditation guides and the various orders from Gurze Books that I pay for piecemeal are good tools, but they are not going to fix me.
The hard truth is that I don't know what will fix me. I don't know if anything will. But if diabetics and heart patients and Crohn's patients get access to basic treatment options that the establishment accepts as basically effective treatment? Then I want access to that equivalent for my illness, too. And I don't see why I shouldn't get it.
Again, not every diabetic patient has coverage for the newest cutting-edge CGM system, and not every Crohn's patient is covered for treatment/research at the Jacksonville Mayo Clinic (which specializes in diseases of the digestive system). But for the most part, insurance plans, once they see a diagnosis of Crohn's or diabetes, will at least grudgingly cover the basics. (When they don't kick you off the plan for a pre-existing condition, that is, but at least we're moving away from that.)
But in mental health? In eating disorders? Not so much. We're on our own. We can get our Lexapro or our Abilify or our Lithium or what have you, but if it's not drug-based, then mental health patients? We're on our own.
I earned the nickname Cynical Nymph and have kept it for a reason. When it comes down to it, despite a persistent rash of optimism, always lurking in my mind is the certainty that things like this mental health/health insurance problem exist because of the worst sides of people.
I specialize in complaining and in assuming the worst of people after I've tried to argue myself into believing the best. In this case is that translates to: the insurance companies don't want to pay for me now, so they'd rather pay later, when I have heart problems and dental problems and esophageal problems, etc., and that the pharmaceutical companies don't want me offered better treatment because then I would stop taking their drugs.
What I know right now is that "everyone" seems to admit that we don't really know what to do about eating disorders, but we know the direction we need to go in. It's accepted knowledge right now that we need to treat with the treatments we have, research the environmental and biological causes and risk factors, and above all not be complacent in treatment.
But it's accepted reality right now that finances force complacency, and that insurance companies are not interested in providing what's accepted as bare minimum levels of eating disorder treatment. (SSRI's and bimonthly psychiatry appointments do. not. count.)
That's the reality and it's been sued and argued and researched and evaded and ignored. The reality is $60,000. The reality is $10,000. The reality is that I know I am expensive, okay?? I know it. But I also know that I deserve treatment. I'm a human being. I deserve it.