The definition of insanity is doing the same thing over and over, and expecting different results – so the saying goes. But that’s exactly what the eating disorder “treatment-industrial-complex” wants us to do.
“You can’t treat a 40-year-old like you treat a 20-year-old, you just can’t,” said Dr. Michael Strober, director of the eating disorders program at UCLA’s Stewart and Lynda Resnick Neuropsychiatric Hospital. “There’s no shortage of very poor care… In some residential centers, what clinicians say to people is just mind-boggling. There are people who say things that are just untrue and that’s a fact. The absence of knowledge is very striking.”
It’s one reason a woman like Rachael Farrokh – the 37-year-old, San Clemente woman who recently garnered media attention for her attempt to raise funds to enter treatment – could starve herself to 40-something pounds despite having attended several treatment programs over the past decade.
Strober, and Bulik – a co-author of the 2012 IJED study – along with a handful of researchers placing increasing focus on what’s starting to be called the “SE-AN” population (individuals battling “Severe and Enduring Anorexia”) are trying to raise awarenesss about the need to develop more age-appropriate interventions which meet the needs of an underserved population. Bulik agreed with me that treatment centers need to be honest about what they can and cannot offer their clients, particularly when it comes to women with a longer and more complicated history of anorexia.
“This is a huge issue. Businesses can basically say anything they want to about themselves: ‘We are the best, the oldest, the largest, we have the best outcomes, etc.’ – and they very rarely have any data to support their claims,” Bulik said via email. “The Web sites and brochures are attractive, calming, reassuring, and promising, and [offer treatment which is] much less threatening than thinking about admitting to a hospital-based program with a much more clinical Web site – but [which is a program that] provides evidence-based care.
“Often we get people in our program whose insurance has been eaten up by these programs – [and these people] often have had prolonged admissions [to multiple centers] with no progress.”
Another problem, while not entirely unique to eating disorder treatment, is the widespread failure of clinical practice to lag behind the most current research on what forms of therapy are empirically supported for eating disorder treatment and what forms are not – known as the so-called “research-practice” gap. One 2012 study found that clinicians at traditional, for-profit eating disorder programs are more likely to utilize and endorse practices which are not empirically supported than university-based researchers/research-clinicians [v]. (This issue will be discussed in more detail later in the series).
It’s little wonder older women are falling victim to these programs. Eating disorder treatment is a $3 billion dollar industry that is rapidly growing due to increased demand, according to IBISWorld[vi], thanks in part to national awareness campaigns. Its profit potential is so high the industry has garnered the interest of the nation’s largest, behavioral health investment firms, including Acadia Healthcare Company which, along with a small handful of additional firms, has bought up nearly the entire market. This treatment field ranges from part-time, outpatient programs to 24/7, hospital-based, inpatient treatment. For-profit treatment makes up the largest segment of the market; nonprofit, university-based, treatment programs strapped for funding – but held to evidence-based practices – are increasingly rare. UCLA Medical Center, for example, stopped treating adult clients a year ago.
For-profit residential centers presumably bring in a hefty bulk of industry profits – there are roughly 65 – 70 of them spread throughout the U.S., and they cost between $1,000 – $1,500 per day to attend. Patient stays can range in length from 30 days to a year – the latter being the amount of time I was forced to remain at my last treatment center.
I am writing this story to shed light on what I believe has become, to steal a term used for a Mother Jones investigation into the largely unregulated, private, addiction treatment industry, a “Rehab Racket” in the field of eating disorders[vii]. The for-profit treatment occurring for anorexia and other eating disorders is a similarly unregulated industry where licensing varies widely by state, and programs are held to little accountability or transparency. Centers are not required to track or report client outcomes to demonstrate whether their programs actually work.
I’m writing this article because centers need to start being honest with older women about the uncertainty surrounding the efficacy of the treatment they’re providing, instead of advertising themselves as “centers of excellence” that will almost certainly cure you.
The irony is, a few years ago, I was also part of the movement working to expand coverage of residential, eating disorder treatment. My landmark case, Harlick v. Blue Shield, changed the law in California and now requires private insurance plans cover this form of treatment for any of the nine disorders listed in the state’s Mental Health Parity Act – which includes anorexia and bulimia. The lawsuit made front-page headlines in local and national newspapers – including the New York Times – and was lauded within the eating disorder community as a game-changer that has already helped set the precedent to bring similar, mandated coverage to other states.
Back in 2011, when my case prevailed, I was happy I won – I was happy more people would get – and continue to get – much-needed treatment. Most of all, I was happy my parents got their money back. But now I question whether my case was such a resounding victory. Now I wonder whether maybe insurance companies have a right to dispute covering an expensive form of treatment that has no evidence to support its efficacy, nor shell out $1,000 daily to centers who don’t provide transparency or use science-based practices. If I could do everything over again, I would sue the treatment centers, not Blue Shield: to get a refund for a product centers never delivered on – and to sanction a system that is not only exacerbating many women’s illness, but destroying our careers and personal lives, brainwashing our families and sometimes, even, killing us.
Anorexia is widely known to be the most lethal of psychiatric illnesses: my population has the highest mortality rate of any mental disorder (20 percent) and a markedly reduced life expectancy. And more than half of deaths from anorexia occur from suicide. Compared to the general public, people who suffer from anorexia are 57 times more likely to die of suicide[viii]. It is my belief that the inappropriate treatment being administered to older adults with long-term anorexia is playing a role in this. Because when you place hope in a system that says its “evidence-based” practice will make you better, but you fail – over, and over, and over again to maintain your recovery, post-discharge – you blame yourself. You think, “These reputable centers, they’ve told me they’re providing me the most current, research-based care; they tell me their prescription for recovery is right, and proven, and that if it didn’t work for me, I’m the problem, not them. I’m the one who hasn’t ‘fully surrendered’ to recovery… So clearly it’s me who’s inherently defective, not them; clearly, I’m a hopeless case and clearly, I should stop fighting for my recovery, because it’s never going to happen.”