I'm spluttering not so much at this article about insurance refusing to cover bulimia treatment (though the situation is very much splutter-worthy), but at the comments.

Generally, I don't read the comments on news articles mostly because they're either from extremist wingnuts, they're irrelevant, or people use the anonymity of the web to act like immature jackasses.  But I started reading the comments on this article, and my eyes just saw red.  I've gotten used to a lot of the misconceptions about eating disorders ("Just eat a sandwich!"  As if that hadn't occurred to me...) and although they're annoying, I understand that much of them stem from a lack of knowledge rather than sheer idiocy.  That is, I have hope that this person will one day understand EDs a little better once they have more knowledge.

These comments, however, are the epitome of sheer idiocy.  Some examples:

Blue Cross/Blue Shield is my insurance carrier as well. I will call and support them in this decision and I hope many more call and support this decision. I don't want to pay for her care. She is an adult, she needs to take care of herself. I'm glad this has been on the news. It brings awareness to many of us, of the crazy things people try to get insurance companies to pay for. No wonder this country is in a health care crisis. If we all get a disease then we can all be on easy street. WHATEVER

They don't help many child genetic issues either. The disabled children in this country and the Veterans in this country can't even get the medical help they need. So, why does this family feel that their daughter's condition is worthy of help? As far as I am concerned they can pay for it out of there pocket. I have to pay for "most" of my disabled child's medical bills, because insurance won't pay them. Do you see me ranting on tv and picketing the insurance company? No!!!

Or

Let her parents support her! Why should the insurance company pay. In the end all of us that have insurance with BCBS will be contributing to paying for her care. I too am going to call them tomorrow and agree with their decision to not pay for her care. My grandparents need medical help,they have cancer, the insurance company don't pay all of their bills. They act responsible and pay their bills, they don't go picket the BCBS office. They pay for their own home care.

The logic is so bad it's astounding.  Yes, getting sick drives up health care costs.  We will all get sick and it will cost money to get it treated.  Unless you have a way to prevent all illness (and something tells me if you're this blatantly stupid, you don't have the extra neocortex to come up with something so groundbreaking), then we're going to get sick and need insurance.  Any questions?

Also, I think some of these people have picket envy.  If you're pissed off, go picket.  It's your right.  You're allowed.  But don't get pissed because you can't/don't/won't take such a stand.

I just end up incensed when people (some of whom are in my family) see an eating disorder as the self-indulgence of a pampered kid.  I was exercising for hours a day on a broken foot--that's not being pampered.  Something primal in my brain was driving that, something that can't be explained by wanting to stay on my parent's health insurance policy (which wouldn't have happened because I was 28).  If that was the case, the curing an eating disorder would be as easy as refusing people with EDs health insurance.  It has happened to me (I am, literally, uninsurable), and I didn't spontaneously recover once that occurred to me.

I know I shouldn't let the little bastards get to me.  There were supportive comments on there, too.  I know most people try to understand.  But every now and again, the ignorance just astounds me.  I don't wish an eating disorder on anyone, but sometimes, I do wish these people would be able to experience an eating disorder from the inside before they open their gaping, ignorant maws and spew forth utter crap.

Those of you who are friends with me on Facebook have read updates on my quest to transition to full-time freelance science writing. The major hindrance to going full-time is health insurance. My eating disorder (and accompanying medical issues, such as osteoporosis, epilepsy, a herniated disc in my back, GI issues, etc) would all be considered "pre-existing conditions" and thus not eligible for coverage. Hence my almost too ironic job at the bakery: a group plan under an employer would render me eligible for coverage, even of my pre-existing conditions (after a 6 month waiting period). This fact also tethers me to having some sort of full-time-ish job, which is rather irritating for someone who wants to spend their time freelancing and not slinging bread, wrangling pies, and frosting cupcakes.

Thankfully, my parents have a fantastic insurance agent whose office is right across the street from the bakery and I talked to him about what the possibilities were for me. Presciently enough, on July 1, Virginia adopted the federal high-risk pool insurance program for people with pre-existing conditions that were otherwise uninsurable. The key is that your pre-existing condition cannot be covered under a policy for 6 months. What we came up with was a short-term medical plan that would not cover my pre-existing conditions and a special hospital income protection policy if something catastrophic happened. At the end of those 6 months, I would go into the federal high-risk pool. Since mental health parity also took effect on July 1, I should--fingers crossed--be okay.

What shook me, however, was the agent's comment that without Virginia's adoption of the high-risk pool, I would be uninsurable. That would mean my dreams of freelance science writing were essentially dead in the water. My eating disorder had effectively rendered me untouchable.

That's what breaks my heart: that some bureaucrat somewhere could so quickly and efficiently kill my dream because I have an eating disorder. I realize that paying out more in benefits than you take in with premiums isn't a good business model. I get that. I also get that eating disorders aren't cheap to treat. But to have an eating disorder diagnosis render me unable to get a health insurance policy for the rest of my life? It's depressing.

I feel like I have worked so hard in recovery to try and bring back a semblance of normality and health to my life. Many of my hopes are pinned to the wish that, one day, the spectre of my eating disorder will no longer haunt my every move. Finding health insurance is a stark reminder that some people never forget. I know some of my family members have been unable to forgive me for getting ill, and I had attributed that to human emotionality and fear and frustration. But this cold, calculated move makes me wonder if I'm permanently broken. If a whole, healthy me will ever emerge from the wreckage of anorexia.

I don't want to dwell on this, as I know insurance companies know precisely diddly squat about life. They were, after all, the ones who denied almost all my claims relating to the eating disorder, when I was sick enough that even I knew I would die without immediate treatment.

Although I have some issues with the health care reform bill that finally passed through Congress earlier this year, it has allowed me the chance to live my dream, and for that, I am grateful.

I was out to coffee with two of my friends from DC this morning (L was visiting me, C--my very first friend EVER--was home for the weekend, so all us DC peeps were together in the Midwest) and we got to discussing health care reform. Part of it was shop talk of people who live in DC, and part of it was related to C's job at a non-profit advocacy group that works on health care reform. Although I didn't talk specifically about how this would relate to eating disorders--both L and C know about my history and current relapse--I did think about it.

A little while ago, I read a new paper from the International Journal of Eating Disorders titled "Service users' views of eating disorder services: An international comparison" that really seemed to drive home many of the conundrums I think about with respect to both health care reform and eating disorders. In this debate, the UK's National Health Service is either held up as a good example or how Satan would provide health care, depending on your political persuasion. It is, of course, more nuanced than that, especially in terms of treating eating disorders.

The study concluded the following:

Both samples identified the following as essential aspects of care: good therapeutic relationship, holistic approach, individual psychotherapy/counseling, specialized treatment, client-centered care, and support. In the US sample, the main concerns involved lack of financial accessibility to services and problems with insurance coverage. In the UK sample, lack of and inequity of availability of services were highlighted and three main barriers to accessing care were identified.US and UK service users' views suggest that neither country provides early intervention and comprehensive care for EDs at present, although due to dissimilar health care systems the barriers to care differ.

My own personal opinion is that neither system does a good job of treating eating disorders. The labyrinthine system of insurance coverage and treatment options (most of which aren't covered by insurance) in the US is almost impossible to navigate and just as impossible to pay for. If you have an eating disorder, you rapidly learn the meaning of terms "not medically necessary" and "out-of-network" and how to meet your annual deductible by the third week of January. Options, yes, if you can pay for them, but precious few are evidence-based. In the UK, you face year-long wait lists and draconian criteria for hospitalization. Yes, everyone gets care, if you can survive long enough to get seen.

Both systems have their advantages and disadvantages, but the plain fact of the matter is that we, as a human race, suck at treating eating disorders in particular and mental health issues in general. I don't know of any shining examples out there. No one has all the answers. But I know that some of the answer lies in developing evidence-based treatments and insisting upon their use. Because giving treatment to everyone won't do much good if most of those treatments have no proven efficacy.

Low blood pressure and orthostatic hypotension (a massive drop in your blood pressure when you go from sitting to standing) frequently accompany eating disorders, and I am no exception to this. A recent letter my dad received from our health insurance company provided such a fantastic cure that I had to share it here:

Step One: Get initial blood pressure reading.

Step Two: Read first paragraph.
"As a valued customer of [Health Insurance Company], we want to inform you of an exciting new contest. [Health Insurance Company] is committed to [this state's] health through our unique mission and believe in supporting healthy lifestyles. That's why we're proud to join forces with [local TV station] and The Parade Company for the Biggest Loser: [Big City] Edition.

Step Three: Repeatedly use four letter words and contemplate ripping letter into small shreds and igniting it on the grill when you make s'mores as part of your new anti-anorexia healthy lifestyle. Your face may turn red- this is a normal side effect of rising blood pressure and should be expected.

Step Four: Read second paragraph.
"The contest is simple. Anyone can enter at [website] by telling us their story and why they want to change their life through healthy weight loss. The deadline to enter is July 24. [Health Insurance Company] and [local TV station] will then select six contestants and track their progress towards a healthier future. One of the six contestants will go on to be named [state's] Biggest Loser, win some great prizes and ride on a float during America's Thanksgiving Parade."

Step Five: Feel face turn from red to crimson. Some veins may emerge, especially on the forehead and neck. Again, this is a normal side effect of increasing blood pressure.

Step Six: Read last paragraph.
"It's about eating well and exercising to lose weight, and [Health Insurance Company] is looking forward to helping people take the first step towards a healthier lifestyle. We encourage you to check out the contest details at [website] and spread the word to your employees."

Step Seven: Get another blood pressure reading. Higher? Congratulations! You've cured your low blood pressure. Now it's time for some matches.

Of course, I would like to send the health insurance company links to educated, informed opinions about the general ineffectiveness of dieting (yes, it's still a diet whether you call it a "lifestyle change" or a "contest") and of the health risks of the Biggest Loser in particular. I would love for them to read in detail about my own former workplace's Big Fat Loser contest and how I wound up quitting to save what little sanity remained after being inundated with posters tallying people's weight loss and signs saying "Nothing tastes as good as thin feels."

I would also really REALLY like this Health Insurance Company to know that there are many different aspects to a healthy lifestyle, such as, I don't know, not having an eating disorder. The jury is still out as to whether obesity significantly raises mortality risk; it's not for eating disorders. A girl with anorexia is ten times more likely to die in the following year than a classmate without anorexia. This is the same douchebag insurance company that refused to cover a DIME of my last residential treatment stay because they said it "wasn't medically necessary" or that the facility I went to wasn't in-network. It depends on which denial letter you read, but the results are still the same. Never mind, of course, that I was in and out of the ER several times a week with hypokalemia, was in ketosis, had irregular EKGs, and was underweight and still dropping rapidly.

Committed to healthy lifestyles, my anorexic ass. They're committed to paying out as little money as they possibly can, and they think that by supporting crash dieting, they will save money in the long run and look good in the short run.

Have I cured your low blood pressure, too? Writing this sure cured mine!

An ongoing lawsuit against Horizon Blue Cross/Blue Shield of New Jersey was settled for $1.2 million. The suit was begun by Dawn Beye after coverage for her daughter's eating disorder was denied on the grounds that an eating disorder is not a biologically based mental illness.

The family paid out of pocket for treatment, and was left tens of thousands of dollars in debt. In part to challenge the insurance company's ruling that anorexia was NOT biologically-based, and in part to get coverage for the treatment their daughter deserved, they filed suit against Horizon.

Years passed.

Today, I read a story that Horizon agreed to settle the suit (joined by other families in NJ) for $1.2 million, plus the cost of legal fees. Once the money is divided up, it might not be much, but at least the insurance company is paying.

But the real reason I'm rejoicing? This settlement means that eating disorders will be treated as biologically based mental illnesses.

From the Star-Leger article:

Under the terms of the agreement, Horizon will not admit any liability but will provide "parity treatment to eating disorder claims in the future for all current members who are fully insured," the statement added.

Previous coverage of the lawsuit (and others in NJ) can be found here:

A Whole New Battle
Insurer sued for refusing to pay the cost of anorexia
Dying to be thin: who should pay?
Families fight insurers over eating disorders
Some elite anorexia experts join Wayne mom's fight with insurer

I start my new job tomorrow, and I received my "benefits" package in the mail. Aside from the fact that it came in a nice organic cotton tote (inside the mailer), I found information on long-term care insurance, saving for retirement, a health calendar (more later), and yes, health insurance.

I can pick from two plans: an HMO and a PPO. The HMO is much cheaper, but also much more limiting. The PPO has cheaper prescription co-pays, and when you have four different medications you have to take in order to stay sane, keep eating, and not get so depressed you can't get out of bed in the morning, that's important.

So I started looking for behavioral health care, since access to quality therapy is likely going to be the make-or-break decision. What I found was appalling.

There was no mention of behavioral health care in the packet. Okay, fine, there was one mention: in the percentage they would pay from in network vs. out of network for the PPO. That's it.

What I did find was how the various insurance companies would help me pay for the following:

• Weight Watchers
• Jenny Craig
• fitness equipment
• a FREE pedometer (just call this 1-800 number and it's ALL MINE!)
• yoga
• chiropractor
• massage therapy
• aromatherapy
• acupuncture
• dietitian (so I can be healthy! and lean! and fit!)

No joke. I can deal with the fact that they don't say "If you have an eating disorder..." But there was nada on behavioral health. Zip. Zilch. Zero.

Riiiiiight. Because I have "behavioral issues" not an actual brain disease. Well, hello Mr. Descartes. Nice to see you again.

I also received a health calendar with "tips" for each month- some of which were innocuous, like don't get so stressed out! Take a break! Spend time with your family! Then there was the "Achieve and maintain and healthy weight!" months. Lovely. The worst thing, though, was a teensy little box within the little box for each day where I was told to record how many minutes I had exercised. Way to go obsession! Besides, you're not supposed to exercise every single day. They don't have a take-a-break-from-your-workout box.

Sheesh.

We really do live in a world that fosters eating disorder behaviors. And if you do fall down the rabbit hole into a full-blown ED, you can't find diddly squat on how to get treated for it.

Oh, the ironies!

I got this email from the Eating Disorders Coalition, and I need to share it with all of you:

National Call-in Day for Mental Health Parity is today, Wednesday July 9th! Your help is urgently needed to help pass Mental Health Parity this session!

The US House of Representatives and the Senate negotiators have reached a final agreement on all the remaining mental health and addiction parity issues. However, approximately $4 billion over 10 years in offsets is needed to pay for the bill and must be found before parity can be brought to the floor in both chambers for final passage. Once an offset has been found, there is commitment from leadership in the House and the Senate to bring the bill up for a vote as quickly as possible.

Although House and Senate leaders have not decided yet where they will find almost $4 billion over 10 years to pay for the cost offsets required by Congressional rules, negotiations have successfully concluded on the key policy provisions. This compromise is the result of long negotiations and advocacy of organizations all across the country. The compromise includes many key provisions that were included in the House-passed bill, the Paul Wellstone Mental Health and Addiction Equity Act and would be an important step in ending insurance discrimination facing people with addiction and mental illness. Here are some key points in the compromise:

- The compromise requires parity in insurance coverage for addiction and mental health treatment for both in-network and out-of-network coverage. This does not mean that the bill requires that insurers cover addiction and mental services, only that if they do cover these services, there must be parity with medical/surgical benefits. This of course would be a very positive development both in requiring fairness in insurance coverage and taking a strong stand against discrimination toward people in recovery or still suffering from addiction and mental illness.
- The compromise requires plans to disclose their medical necessity criteria and reasons for any denials of coverage. This would be a major breakthrough, as many plans refuse to disclose medical necessity criteria or reasons for denial, especially when addiction treatment is sought.
- On the issue of protection of state laws, the compromise bill language is silent. The House bill explicitly protected state laws, and in earlier versions the Senate bill explicitly preempted state laws. Silence is a victory for those of us who agree with the House approach that state laws should be protected, since in most situations Congress must take explicit action to overrule a state law in order for state laws to be preempted. However, to make protection of state laws even more ironclad, we will be working to ensure that the legislative history of the bill makes clear that the sponsors’ intention is to protect all state laws. That way, as important as the passage of a federal parity law would be, stronger state laws would remain in effect and states would be free to enact additional stronger protections in the years to come.

Wednesday July 9th is National Call-in Day so please call your Member of Congress and Senators on July 9th and tell them that now that an agreement has been reached between the House and the Senate, Congress must find the money to fund this historic mental health and addiction parity legislation and pass parity now.

Here is a link to our National Call-in Day Online Advocacy Action Center; http://capwiz.com/facesandvoicesofrecovery/callalert/index.tt?alertid=11569321&type=CO. On the website you will see background information, a script for the call and a tool you can use to punch in your zip code and get your Member of Congress and Senator’ names and phone numbers.

Thank you for supporting Mental Health Parity and for taking a few minutes to make these important calls. With your help we can get this done!

Have you called yet? I have.

Anyone who has been diagnosed with an eating disorder in the US has no doubt faced the confusing and labyrinthine process of getting coverage and appealing those denials.

Says an op-ed piece called Starved for adequate care in the LA Times:

The case highlights the issue of "medical necessity" that lies at the core of so many eating disorder-related health insurance battles, and that will be central to any health insurance reform. How does an insurance company decide who is sick enough to warrant treatment or hospitalization? Whom do we hold accountable for decisions about which treatments are "medically necessary" and which aren't?

Answers are hard to come by because insurers deny or severely limit coverage for an eating disorder -- as with all mental illnesses -- based on a medical assessment process that is neither uniform throughout the industry nor transparent...

...The American Psychiatric Assn. has issued clear guidelines for the care of patients with eating disorders (including when to hospitalize and discharge them). Insurance companies, however, are not compelled to follow these guidelines and seldom do. Nor are they required to heed -- or even listen to -- a patient's own doctor. Instead, they use the catchall term "medical necessity" to differentiate those who merit coverage from those who don't, without defining the term.

With insurers ducking behind this meaningless lingo, patients and their exhausted families can only mount appeals, face mediation or sue. But corporate stonewalling, quibbling over claim-filing technicalities and other bureaucratic minutiae often simply wear them down.

Smith's parents lost their daughter to an insidious disease that is much better understood than it once was. But the gap between what doctors and researchers now know about anorexia's deadly risks and how it gets treated in the real world of the health insurance system was, in Smith's case, too wide.
(emphasis mine)

The article is passionate and poignant- but there are heights and weights listed for one of the patients, so if that is triggering, just stick to the portion I've shared here.

For sufferers of eating disorders, who often don't understand how sick they really are, being told "you're not ill" is like being slapped in the face twice. It adds to the guilt and feelings of I-don't-deserve-anything. The road to recovery is long, hard, and rarely straight. Health insurance shouldn't throw obstacles in the way.

Currently, Illinois is waiting on the governor's signature to make eating disorders treatment part of mandatory health insurance.

You wouldn't leave out Alzheimer's. Or Parkinson's. Or a brain tumor. So why eating disorders? They're brain diseases, too. Just because you can't see the differences by looking directly at someone's brain doesn't mean that they're not just as real.

Of course, the insurance companies have their proverbial panties in a bunch over this. In the Chicago Tribune article cited above, the high cost of eating disorders treatment was cited as a reason the companies didn't want to cover them.

But my insurance covers organ transplants. I have a $1 million lifetime limit on that. If that coverage was suddenly dropped, people would be up in arms.

Up.
In.
Arms.

But if eating disorders were treated properly--early and aggressively--you might have an overall decrease in cost over time. From the Tribune article:

"As with other serious illnesses, early intervention can save victims' lives and insurers' money, before patients end up in the intensive-care unit on a feeding tube, with heart and kidney failure, she and other advocates say. "With cancer, we don't wait until tumors spread throughout the body," Elsner said."

Frankly, eating disorders shouldn't be covered because it's cost effective. They should be covered because they are real illnesses happening to real people and there are real treatments out there.