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.

There was an interesting thread I found on a discussion board that was discussing why medical professionals were so obviously not clued in about eating disorders. There are issues of insurance companies (in the US) and national healthcare rules (in Canada, the UK, etc), but that's not exactly what I'm getting at. It's that most medical professionals just don't get it--even, occasionally, those that say they "specialize" in eating disorders.

I can think of several reasons this might be:

1. Ignorance. Some doctors really truly don't have a clue. The more dangerous (and common) situation is where the doctors think they have a clue, but they really don't. We can break this down even further: there are those medical professionals who have no idea that they're out of their league and there are those won't admit that they're out of their league.

It's interesting, because I really respect a doctor who can say "You know, this really isn't my area of expertise, but let me find someone who can help you better." I'm guessing it's hard for someone (a doctor in particular) to admit they don't know everything, but I can tell you that I respect you more because of it.

2. Powerlessness. Many things that GPs and PCPs are trained to treat basically involve telling a patient what to do or giving them some medicine, and then the problem is solved. Even when other chronic conditions aren't quite this straightforward, there's an obvious path to take. First you do A, then you try B, then C. So some doctors will do the old "have a sandwich" routine because it's the kind of thing that works with other illnesses.

But the problem with an eating disorder isn't actually eating the sandwich. It's getting yourself to eat (and digest) the sandwich. Not that EDs aren't frequently accompanied by GI issues, but I can guarantee you that most ED patients have thought about eating a sandwich. It's the fears of what might happen if I eat that sandwich that get most patients, and I don't think that's really understood.

The other thing that I don't think many doctors realize is that EDs really aren't like other illnesses. The reason why?

3. Wrong assumptions. When someone gets sick, they usually want to get better. The problem with eating disorders is two-fold: many patients don't recognize there is a problem. And when they do, there are often serious issues with the follow-through. Sometimes motivation fades. Sometimes you're just lying to get the hell out of the office. Sometimes the patient underestimates just how hard it's going to be. Or they don't grasp the depth of the problem ("My eating disorder really isn't that big of a deal.") Most medical professionals don't get this. They don't understand why someone would engage in ED symptoms. So they assume that you're ready and willing to stop--which isn't always the case.

4. They take the patient's lead. This isn't always a bad thing. I think it's good for doctors to take a patient's lead on interaction style, what types of treatments work best, that sort of thing. But when a patient really isn't all that distressed by something that is killing them, the doctors often figure that it must not be that serious.

(I've had this problem with depression simply because I'm not overly demonstrative of my emotions, and I have a very dark sense of humor anyway. So I can be severely depressed and making smart ass remarks...only I really do mean them.)

5. The media. Mostly when you see EDs in the media, you see the most extreme cases. So when someone comes into your office whose weight isn't as low as that chick on TV last night, or who doesn't binge and purge as frequently, it's much easier (though no less irresponsible and stupid) to write that patient off.

6. Over- and under-reliance on labs. Many people with eating disorders can be severely ill and still have normal labs. On the other hand, people can look rather healthy and have totally whacked out labs. But since their weight isn't really low, it can't be that bad. If their weight is low, but their labs are normal, then they're not that sick.

7. Over-reliance on weight. This one pretty much explains itself.

8. Obesity hysteria. When all the messages you hear are to make sure that your patients aren't too fat, you're probably not looking to see if some of them are too thin. A doctor frequently encourages someone's weight loss efforts because they're thinking "At last! Someone I don't have to lecture about Cheetohs!" Or they overlook weight loss in a growing child because they're not yet "underweight" even though the weight loss is dramatic, marked, and takes the person off their growth curve.

9. They just don't want to deal with it. I'll be the first to admit that I'm probably not the easiest patient to have, especially when I was ill. I'd skip appointments or show up and deliberately blow off your advice. I wasn't aware that I had a problem, and then a crisis would arise and all hell would break loose. I don't envy my doctors and therapists, which is one of the most obvious reason why I don't want to be a doctor/therapist myself. But tough patients come with the territory. It's part of the game, and it's someone's life that you're gambling with.

Why do you think so many medical professionals just don't get it? Share in the comments, but I ask that this not become a comparison to see who was the sickest. You don't need to say how many times a day your purged, or what your weight/BMI was. That's not the point. What I'm curious to see is what have your experiences taught you about why so many doctors are so clueless about eating disorders.

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.

"Health care reform" is a huge catchphrase in the US right now, causing an endless array of debate as to what the future of American health care will look like. Within the health care debate, improving access to care is one of the main goals. Access to care can be limited by any number of factors, such as geography (you live out in the sticks), time (treatment providers don't have evening/weekend hours), money (you can't pay for your treatment), and also stigma related to seeking care. For mental health issues in particular, stigma can play a large role in discouraging people to seek care.

Many people are loath to admit they have a mental health problem. And eating disorders in particular carry the stereotype of being a young, white female's disease. Furthermore, eating disorders are egosyntonic, which means sufferers are not likely to seek care on their own. A recent study from the International Journal of Eating Disorders titled "A Qualitative Study of Perceived Social Barriers to Care for Eating Disorders: Perspectives from Ethnically Diverse Health Care Consumers" examined specifically which factors prevented ED sufferers from seeking care (Becker et al, 2009).

The authors note that

Specifically, respondents perceived that social costs related to acknowledging an eating disorder had influenced them to avoid or postpone treatment or limit their disclosure of related symptoms...Respondents perceived that concerns or symptoms had been unrecognized, misinterpreted, or dismissed because of expectations about the presentation of an eating disorder or social norms relating to weight...Finally, additional impediments to accessing care included economic or health insurance constraints as well as suboptimal availability of specialty services.

Another recent study about barriers to care focused on mental health literacy and treatment-seeking for anxiety disorders, from the journal Depression and Anxiety, and was titled "Barriers to treatment seeking for anxiety disorders: initial data on the role of mental health literacy" (ME Coles and SL Coleman, 2009). Here, the problem was less focused on stigma to seeking care and more focused on a person's ability to recognize and label a set of symptoms as a potential mental health problem.

The statistics were not uplifting. Some disorders (such as OCD and social anxiety disorder) were more easily recognized than other anxiety disorders. From the paper's abstract:

Findings showed that social phobia and obsessive compulsive disorder (OCD) were associated with recognition rates that were generally high and similar to depression ( approximately 80%). In contrast, less than half of the respondents labeled panic disorder or generalized anxiety disorder (GAD) correctly. Symptoms of OCD were attributed to mental illness by approximately 50% of respondents, but such attributions were rare for the other anxiety disorders studied (<12%).

In terms of improving mental health care in the US, we not only need to improve access to care, but also help people recognize what mental health issues may look like, that these issues can affect anyone, and that there is no shame for having a problem and seeking appropriate help.

In the continuing debate on health care, we hear a lot of terms thrown around, terms like "death panels" and "public option" and "pre-existing condition." I am all too familiar with these terms (especially the third one), as well as one other term that has been increasingly used as our country tries to figure out what the bleepity bleep to do about health care. That term? Personal responsibility.

An op-ed piece in Newsweek by Jeneen Interlandi addressed this idea head-on.

If I develop diabetes or cancer or cardiovascular disease, I will undoubtedly add to the nation's health-care burden. But my behavior is only one in a host of factors that will determine whether any or all of those conditions eventually befall me. In fact, a rapidly growing body of evidence indicates that how much education, income, and social status people have, what's advertised on the billboards or sold in the stores around them, and how clean the air they breathe and streets they walk on are kept, have as much to do with their health as diet, exercise, and doctor's appointments. "It's the context of people's lives that determines their health," says a recent World Health Organization report on health disparities. "So blaming individuals for poor health or crediting them for good health is inappropriate."

Now, I'm not anti-personal responsibility. I'm not saying that this is a green light to velcro ourselves to the couch and eat Ho-Hos all day. But "choosing health" isn't as straightforward as it might seem. How can you eat properly when many major cities have large food deserts? When it's not safe to play outside? When there isn't a good place to play even if it was?

Nor do we have good ways to accurately measure "responsibility." As long as you're not a smoker and your weight is in the "normal" range, congratulations, you're "healthy" and "responsible."

Writes Interlandi:

Consider the most oft-cited source of our national health-care woes: type II diabetes, triggered by obesity. My food choices alone should make me a prime candidate for both. But I am 5'3" and I have never weighed more than [redacted] lbs. I'd like to take credit for showing restraint at the pastry shop, but the truth is, I have no restraint. What I do have is a lightning-quick metabolism acquired through a twist of genetic fate. In fact, twists of genetic fate have a significant influence on who develops not only diabetes but a range of chronic diseases...

...Of course none of this information will stop people from blaming the less healthy among us. When we say that people fall ill because they eat too much, drink too much, work too much, or don't sleep enough we are also saying that by not doing those things we can avoid the same fate. Blaming the individual gives us a sense of control over an uncertain future. It's also easier than contemplating our own mortality.

Benjamin Franklin said that the only certainties in life are death and taxes. Well, Mr. Franklin, illness is almost certainly a third, and we're just going to have to live with that. Prevention is good, but people are always going to get sick. Blaming the sick isn't going to make them any healthier.

Funny and informative. Due yourself (and your mind!) a favor and watch this.

The Colbert Report	Mon - Thurs 11:30pm / 10:30c
The Obesity Epidemic - Amy Farrell
http://www.colbertnation.com/
Colbert Report Full Episodes Political Humor Michael Moore

(via FatGrrrl)

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!

Reading the news, it makes me wonder: why is it so hard to get an appointment with my PCP if everyone is being given the power of an MD?

Schools can be doctors. They're putting BMIs on students' report cards, sending home Fitnessgrams (for more, see Harriet Brown and Sandy Szwarc).

Businesses can to. They have health improvement programs at work, Weight Watchers can take over the office because dieting is healthy, and companies can raise your insurance premiums if you don't shape up and lose weight to fit within the "charts."

So with all of these doctors out there, why can't I get an appointment?

Schools can't refill my prescriptions; neither can those at work. Insurance companies dictate your healthcare, headed by people who probably aren't doctors, either. Med school is expensive and difficult. There's a reason for that.

Granted, not all doctors are geniuses, and I've certainly met my fair share of boneheads. I've also met a number of gems, who I would like to clone and keep with me, like little pocket pets. Pull the string and hear their advice.

I have teachers like that, too. Teachers who almost drove 6 hours to visit me in the psych unit, 4 long years after I had graduated high school. Or the professor who told me he was glad to hear I had stayed up too late with friends when I was late to lecture. I hear their wisdom, too.

The difference is that their wisdom typically isn't medical.

I don't want a teacher evaluating my health. They haven't been through medical school, don't have the training. You're my teacher, not my doctor. And those charts- you're a chart, not a measure of my health.

The Fitnessgram sent home with children, which basically looks like the Food Pyramid, only for exercise, has the smallest triangle on top labeled "rest." Which is when you sleep, read, study, etc. So much for the 8 hours of sleep per day, no? And what about school? Are you even supposed to attend? It's hard to take notes or pay attention during class if you're doing jumping jacks.

Now, way back, when we still lived in caves and dragged each other around by the hair, there were no such things as treadmills and stair steppers. Men typically sat around the fire, thought, "Hey, let's go hunt some gazelle." They scratched themselves in strategic areas, grunted, gathered their spears, ran around for a bit, killed the said gazelle, and brought it back to the cave. Their wives hacked it up and roasted it on a spit. Eating and more grunting ensued, followed by a long nap.

They did not evaluate how many servings of gazelle were appropriate. They did not wonder how long it would take to exercise the meal off. They just ate. Like this little hamster here:



The point is: we did not evolve to have our activities (or our food) measured on a cute little pyramid or chart. In Roman times, the average live expectancy for the average person was about 40. So what? They were thin! We live longer and are by and large healthier. We only think we're not because we're told fat is a health hazard, and we have more and more ways of finding out that we're sick. So we can take a pill and the pharmaceutical companies can make a couple hundred million bucks.

Which may be the reason why I'm having such a hard time getting an appointment with my PCP.