Health Insurance and Eating Disorder Treatment Coverage: My Reality

I'd like to talk about eating disorder treatment, mental health benefits in health insurance, and what it's like on the ground for me right now.

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 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.

My Situation

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.


What Works

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.


What's Realistic

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.


What Now

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.

NY State Senate Passes Marriage Equality Bill

This is a huge moment.  This is a huge night.

I am so proud to be a New Yorker today.

We shouldn't need a legislature to affirm rights that are intrinsic to our adult humanity.  In a perfect world, we'd just have those rights.  But it's not a perfect world, and we do need legislatures, or voters, or what have you.  In this case, we have a legislative body, and they have done the right thing.  That's all there is to it.

I was watching the live feed from the senate floor.  I watched as they voted to approve a carefully-worded amendment protecting religious institutions and their non-profit affiliates and individuals working for them from civil or other legal actions.  The viewer numbers at that point were about 36,000 - up from around 4,000 when the link to the live feed was passed around Twitter about two hours before.

Then I watched the numbers climb to about 39,000 as Senator Diaz, one of the Democrats voting no, bloviated about Archbishop Timothy Dolan's opinion about gay marriage (something Dolan's been sure gets into the press the last few weeks), and the U.S. Conference of Catholic Bishops' take on gay marriage (guess), despite the fact that Diaz himself is not Catholic (in fact, he's a minister in a protestant church).  And as the president of the state senate moved to cut him off, and to not allow him to interrupt fellow senators, Senator Diaz rebuked the senate's president for curtailing his rights.  For curtailing his rights to speak about the bill.  Yes, you read that right.  Senator Diaz complained about an abbreviation of his right to speak against this bill, after he'd gone over his own two-minute limit, when certainly not every senator who voted yea or nay was getting mic time tonight.

Senator Diaz wanted his rights.

Well, Senator Duane, who spoke after Senator Diaz, gets his rights now.  Senator Duane, who also went over the two-minute limit, was also curtailed by the senate's president.  But, see, Senator Duane gets a different right.  Well, technically, the same right.  The same right as Senator Diaz, who has been married and divorced only on his own adult say.  Senator Duane, New York state's first openly gay and openly HIV-positive member, can now marry his partner Louis (or possibly Lewis? I only heard it, didn't read it) if they choose.  Or not.  You know, as they choose.  Since it's their choice.  And since it's their right.  And since this state acknowledges that right now.

The viewer numbers on the official senate page were around 49,000 as the New York State Senate roll call officially passed this bill in that chamber.  All that remains is for Gov. Cuomo, who championed this version of the bill, to sign it.

I <3 NY

Primal Scream vs. Fetal Position: Which Do You Choose?

I mean, really.  Which do you choose?  Which is your favorite freak-out option?

Let's assume no one's going to hear you scream, no one's going to walk in on you huddled in the corner quietly decompensating all tucked into yourself.  Which one is your go-to ideal to communicate to yourself the heartwarming truth, that, uuuggghghhghhhgh?

Just curious.

Too Tired to Title Without Four-Letter Words

I may or may not have just had a minor breakdown over the inability of my iPhone's screen protector to lie properly underneath the phone's case.  I'm not admitting to anything outright.

It's been that kind of week month.

I weighed myself this morning to get a handle on the reality of things after I found myself telling my therapist last week that I felt deflated, flat, fragile.  My eating hasn't been off for that long, I reasoned to her, so it's not like I've actually lost weight, so it's interesting that I'm feeling this way.

Well, no, apparently my eating has been off for long enough to have lost weight.  Not anything epic, but enough to go, "Uh.  Huh."  Again, looking at the anatomical physics at work here, it ought not to be surprising.  My body has its own set of calorie in vs. calorie out math, and the math changed for a little while, so... yeah.  Change doesn't happen in a vacuum, I suppose.  Obviously.

So anyway.  This feeling, and this weight.  There's a lot of, "on the one hand... then on the other hand," as you might have guessed.

On the one hand, bully for me for actually having perceived that my weight was down.

On the other hand, sadface that I didn't actually lend any credence to my own perceptions.  "No, no," said I, "it's all in my head."

On the one hand, once I had proof I've lost weight, I realized, "Crap.  That's not the idea here."

On the other hand, a wee devilish part of me felt the familiar thrill.

On the one hand, I thought, "It's good that I can recognize that thrill's not rational, not healthy, and really not wanted.  Progress?"

On the other hand, I thought, "My word, is that thrill ever going to go away?"

On the one hand, I thought I could give myself a pep talk because I've been trying to assert my needs and take care of myself where my interpersonal relationships are concerned, so that's something.

On the other hand, my efforts at self-preservation have been almost entirely rebuffed by the people they've been aimed at, and I'm about ready to steal something from the Met's arms and armor wing and commit very memorable murder.

And on the one hand, it's fairly normal to lose some weight when you've been working 'til 10:00 on weeknights and 8:00 on the weekends, often too focused or anxious or both to even have meals on the radar.

But on the other, final hand, it's not as if a simple forgetfulness or focus is what's really going on here.  No, that's definitely not all.

Anyway, the cat has presented himself to me and has settled his butt squarely in my left hand, so that occupies one of the hands, at least.

And now, a statue with no hands:

If I were a Greek statue, I'd be a lot less conflicted, because my hands would probably have been lost by this point.
(I am posting this picture because if I don't look at something from the Met right at this second, I shall scream.)
(Next time, pictures with the sword I plan to use in my memorable murder.)

Wednesday

It's supposed to reach 97° F (36° C) today.

Ubiquitous Dissonance

Today I (along with probably everyone in the technorati database) received an invitation to a new technorati venture.  I get outreach emails every week or so.  Some just go straight to the trash folder because I'm not interested in blogging about the newest craze in baby slings (e.g.).  Some I'm excited about (ex.: I have a copy of Restoring Our Bodies, Reclaiming Our Lives sitting on my nightstand that has been sitting there since two weeks before the book came out because I haven't had a hot second to read it).

And then there are the ones about diets, dieting, weight loss tips, new diet pills, metabolism boosters, etc.  Fantastic.  Today's email was geared toward foodies and food bloggers and included, in a brief list of acceptable topics, diet recommendations.  So not only am I most manifestly not a food blogger, I'm on an email list soliciting diet recommendations.

Well.  I certainly have those.  But I don't think you want the kind that I can give you.

So here I am, having a shit-storm of a day in a shit-storm of seven days now, and this email arrives in my inbox to remind me, "Hey, hi, you're not okay."  Well, thanks, random email.  I'm glad you reminded me.  Thanks, emailer, for not taking a moment to actually see if I'm a food blogger before you added my email to your list.  Do I expect marketers to read every blogger they email?  Of course not.  But, come on.

I was going to take a page out of The Bloggess's book and write back an over the top, farcical response to the marketer and post the results here.  But you know what?  I'm just too tired.  My food has been completely fakakta since I got back from Atlanta, and everywhere I turn I feel like I'm getting hit in the face with you-still-have-and-eating-disorder flavored pie.  (Inappropriate metaphor is inappropriate.)

This email is one of those little things that start as individual wisps of nothing, but that together form an amorphous blob of suck.  Much like the fur my cat is still shedding, what are you doing to me, Meezie?  Swiffer is really expensive and I simply can't clean any more.

But really, emails like this are overwhelming.  The idea that a solicitation for foodies/food bloggers would include suggestions to write about dieting/weight loss?  The idea that that is such a non-issue, that it apparently doesn't register as total cognitive dissonance to the people planning this campaign?  I'm sorry, but I look at that and stack it up next to the rest of my world and my mind goes, "Ha ha ha!  Good luck recovering and relearning how to intuitively eat with THAT sort of shit all over the place!  Lulz!"

Yep.  Lulz.  It's everywhere.