by Jeanene Harlick | September 15, 2015 11:53 am
I am writing to let you know that, to my deep regret, I must indefinitely suspend the investigative reporting and writing on eating disorder treatment and other, mental health issues I’ve been publishing on A Disordered World. Since winter, I’ve poured hundreds of hours of unpaid work into the research and writing of the several articles I’ve written. I am enormously gratified that literally thousands of families throughout the world have found my articles helpful as they try to separate myth from fact in determining how to best-treat someone with a severe eating disorder. I have many additional, critical issues related to this subject which I’d intended to write about in the coming months. However the work I’ve been doing has come at the expense of my mental, physical and financial well-being. So while it causes me great distress, I’ve decided to take some indefinite “time off” from writing, to restore my health and financial sustainability. A Disordered World’s current content will remain online for anybody to access.
Money was the last thing on my mind when I started working on the stories I began posting in May. I researched and wrote those stories as a public service, to shed light on a form of treatment that has no scientific evidence to support it, and which is endangering the lives of potentially millions of individuals suffering from severe and persistent, eating disorders. Nonetheless, I am a single woman trying to live off of SSDI in one of the most expensive metro regions in this nation. I can not afford to continue to work for free, especially when it is coming at the expense of my health and recovery, and when my articles appear to hold little chance at gaining a wide audience or spurring reform within the status quo — the unregulated and dangerous for-profit, eating disorder residential centers which continue to hold sway for this mental illness in the United States.
To the hundreds of individuals who have publicly and privately commented on my stories or thanked me, I want to say: I am grateful to every single one of you. It brings me inexpressible happiness if my stories have validated anyone else’s experience, or helped lead individuals to appropriate forms of treatment which prevented them from getting sucked into the revolving door of institutionalized, eating disorder care. Your overwhelming response to, and reading of, my articles has made me feel my life is worth living again – has given me hope that maybe I still have something to offer this world.
Before I suspend my writing, however, I must alert you to some urgent issues.
First, and foremost, if you agree the for-profit, private, residential treatment industry needs reform and accountability, I implore you to write to your legislative representatives regarding the Anna Westin Act by October 1. That is the deadline to submit comments on this bill, known as H.R. 2515 in the House of Representatives, and S.B. 1865 in the Senate. (In particular, if you live in the states of Florida, New York, California, Iowa, New Jersey, North Carolina, Pennsylvania, Illinois, Minnesota, New Hampshire, West Virginia, or Wisconsin, contact the co-sponsors of this bill listed at the end of this column.)
If you live near Washington, D.C., or have the means to travel there, you can also attend the “March Against Eating Disorders” event on Oct. 27, or the Eating Disorders Coalition’s Lobby Day on Oct. 28, to provide a dissenting voice to the thousands who will be advocating for approval of “Anna’s Law” in its present form.
I cannot underestimate the import of the Anna Westin Act. The eating disorder treatment industry – and its advocacy arms – are marketing the bill as being about improving eating disorder training for health care and education professionals, and rectifying media and entertainment content which influences eating disorders.
Let me tell you what H.R. 2515 is really about (to read the full text of the proposed bill, click here ). It is about is a tiny clause you don’t find until you scroll to the very bottom of the proposed legislation, under sections relating to the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act (MHPAEA):
“RESIDENTIAL TREATMENT.—For purposes of this section, mental health and substance use disorder benefits include residential treatment.’’
What this means is that every health insurance plan in the nation will be required to cover a private, unregulated form of treatment whose efficacy is completely unproven. Needless to say, the passage of this bill would be a huge boon to the for-profit, eating disorder treatment industry.
I believe mental health parity – which requires insurers cover mental health and addiction benefits on par with other medical conditions – is of course much needed. But I don’t think insurance companies should be required to cover unproven treatments – particularly when, according to my research and the experience of countless others – that form of treatment may actually be making us worse rather than better.
In case you need reminding, there are zero peer-reviewed, randomized control studies on the the long-term efficacy of residential treatment for eating disorders – an industry which has been running strong for almost 30 years. This lack of evidence is particularly egregious when you consider severe anorexia is the most lethal mental illness, with a mortality rate of 20 percent and markedly reduced life expectancy.
On top of this, globally we are spending more on institutionalized care for people with severe, persistent anorexia than we are for schizophrenia.
As Leslie Thompson, another, 30-year-old survivor of the eating disorder, residential treatment “merry-go-round” put it, in a recent comment to “Part 1” of my series:
“I used to think insurance pulling the plug on clients who lived at centers for months on end was a horrible tragedy, but I now agree it is a necessary evil in a futile attempt to regulate the industry. Mental Health Parity laws are forcing insurance companies to shovel out endless amounts of cash for often-worthless treatments. I am not against parity laws, but I am against parity laws being abused. Practices like this are why American healthcare costs are the highest in the entire world… Markets need regulation to protect the consumer – and this market has very little oversight… It is unconscionable that mental health facilities are not held up to the same standards as physical health facilities. A hospital would not perform an experimental surgery on someone based on positive testimonials…. We need to take the magnifying glass to [the eating disorder] industry, because the road to hell is paved with good intentions.”
Thompson, like many others I know, was able to achieve recovery only after extricating herself from the residential treatment system. She is now thriving, working as a legislative assistant in Minnesota.
Thompson’s points are particularly important when you consider that in eating disorder treatment, the most important consumer – the client – has little to no opportunity to regulate the market by choosing the best product because 1) We are deemed unfit, due to our “malnourished, broken brains,” to judge whether that product is good or not, and 2) The quality of the product is unknown because private programs are not required to report whether their clients achieve and maintain long-term recovery.
In November 2013, when the Obama Administration released its final regulations for implementing the MHPAEA, the National Center on Addiction and Substance Abuse at Columbia University (CASAColumbia) released a statement objecting to the lack of a “blueprint for optimum or even effective services… to guide insurers in deciding which addiction benefits to offer.1” Therefore CASAColumbia – a nonprofit research and policy organization which works to increase the use of best-practices in addiction treatment – developed recommendations for what exactly insurers should and should not cover, based on what the evidence demonstrates is effective.
Given that those of us who battle eating disorders lack stellar watchdog organizations such as CASAColumbia to guard against our maltreatment, it falls to us consumers to ardently demand legislators review the science – or more accurately, the lack thereof – surrounding residential treatment for severe eating disorders before passing the Anna Westin Act in its current form.
At the least, ask your legislators to add language to the bill which states insurers are only required to cover residential treatment programs which provide evidence-informed treatment, which track and publicly report clients’ long-term outcomes, and which have obtained the specialized, eating disorder accreditation currently offered by the Commission on Accreditation of Rehabilitation Facilities (CARF) [soon also to be offered by the Joint Commission on Accreditation of Healthcare Organizations (JCAHO)]*.
Really, however – given that attempts to regulate residential treatment for other mental disorders have proven ineffective at uncovering maltreatment or abuse2 — if money is going to go anywhere, I don’t believe it should be going toward residential treatment.
Consider what Ira Burnim, legal director of the Bazelon Center for Mental Health Law, said to me last month in an interview:
“It’s a waste of time to try and regulate residential treatment centers. For example there is a long history of trying to do this with youth residential facilities, and it’s been a complete failure,” he said. “We shouldn’t be spending our time trying to improve (mental health) institutions because they shouldn’t be there in the first place.”
I believe – along with researchers specializing in my population – money should be going toward developing and covering what’s known as “recovery” or “rehabilitative” models of care. Developed in the late 1970’s and 1980’s, recovery models of care are now successfully being used to treat almost all forms of severe mental illness — including schizophrenia, bipolar disorder, PTSD and substance abuse – all except eating disorders. Eating disorder care sits on an island in the mental health field, where its treatment industry has been successful in blinding families to the better, more efficacious approaches being used for all other severe mental illnesses.
*To read more about the role specialized accreditation plays in behavioral/mental health care, read my story touching on this issue as it relates to eating disorder treatment here.
The recovery model approach to treatment is a holistic, strengths-based -rather than deficit-based – approach which treats people with dignity, in their communities, and recognizes that people with severe mental disorders want and can return to being full, functioning members of society when provided access to resources such as supportive housing (for example, “sober living communities”), outpatient therapy, employment assistance, and consumer- or peer-run programs.
Rehabilitative care recognizes that recovery is an ongoing process, defined differently by everyone, and that many individuals can still thrive despite the presence of ongoing but non-disabling symptoms.
The need to move individuals with all forms of severe mental illness out of treatment facilities and into recovery models of care is exactly what the Bazelon Center litigates for.
“With every other [psychiatric] disability residential treatment doesn’t appear to be effective,” Burnim said, referring to the research to date. “Segregating people in facilities doesn’t work… I don’t know why the movement of de-institutionalization hasn’t happened in the eating disorder world. But with all other mental disabilities consumers and advocacy groups have come together to say individuals should be given the opportunity to stay and be treated in their own home… If you want to help people get better you need to treat them in their own environment by helping them learn to better navigate their own world.”
I asked Burnim about the “medical risk” or “self harm” argument treatment providers and parent groups often use to justify residential or inpatient treatment.
“The argument that somehow eating disorders are ‘different’ – a lot of people have tried to say that” for other mental disorders as well, Burnim replied. “But you have many disorders which also come with self-harm or life-threatening behaviors – such as schizophrenia or bipolar disorder. Our position is that that’s part of how the industry maintains their status quo – by saying ‘This disorder is different, so whatever trends are occurring in the disability world don’t apply to us.’”
I believe attempting to funnel more and more individuals with severe eating disorders into residential treatment — by marketing it as the gold standard treatment when it is anything but, and universalizing coverage of it — the industry is verging on violating our American with Disabilities Act (ADA) and Olmstead* rights by leading us into cycles of institutionalization which end in either death or permanent decline. My time cycling in and out of a system I was told would save me lasted more than a decade – as most of you know – and I’m much worse off today than before I entered that maze.
Bazelon’s Web site includes literature on how mental health facilities which look like caring treatment “homes” are often institutions in disguise:
“The physical location of a living setting in the community, its private ownership, or the absence of characteristics generally associated with a hospital do not guarantee that residents with mental disabilities are free of the discrimination and segregation prohibited by the ADA,” reads Bazelon’s statement on the community integration mandate. “Many individuals with mental disabilities are unnecessarily segregated in institutions such as nursing homes, board and care homes, and residential treatment centers that are physically located in the community… Facilities that may have the physical appearance of a home but, in fact, are quite isolated from mainstream community life.3”
Individuals with severe and enduring eating disorders – and their families – are easy prey for for-profit treatment programs because we are weak in body, desperate, and aren’t told that what occurs behind the locked doors of a residential center may not be science-based, nor that we’ll most likely end up knocking on the doors of other centers later, because each prior program failed us. When you write your legislator, demand that if more money is going to be pumped into perpetuating and expanding the “residential treatment industrial complex,” that money also be devoted to researching and developing community-based, rehabilitative services for treating severe eating disorders on a par to which they already exist for other forms of severe mental illness today.
That is the type of parity I want to see. And researchers specializing in finding more effective treatment solutions for severe eating disorders agree.
In the July issue of Journal of Eating Disorders, in an editorial demanding a new treatment paradigm be applied to “severe and enduring anorexia” (SE-AN), Dr. Stephen Touyz and Phillipa Hay called on researchers and health care providers to start providing recovery or rehabilitative models for this population:
“Those living with a chronic illness, especially one as debilitating as SE-AN, are entitled to dream of a better tomorrow and to feel understood not only by the medical profession but by the world at large… Patients with SE-AN can no longer be ignored for they have suffered for far too long, having to contend with an abysmal quality of life devoid of any hope of an effective treatment on the horizon… The time has now arrived to take the bold step in reconceptualizing illness severity in anorexia nervosa especially since there is a growing recognition that the factors that may contribute towards its onset are not necessarily the same as the ones that may perpetuate it…. On measures such as quality of life, those with SE-AN have been found to be equal in impairment to those with severe depressive disorder as well as schizophrenia. Such factors provide a compelling argument as to why a rehabilitation model of care, not too dissimilar to the ones advocated for those with schizophrenia, needs to be considered for those with a persistent eating disorder, including highly specialized acute care when the need arises.4”
*The Olmstead case was a 1995 Supreme Court ruling which affirmed that the ADA prohibits the segregation of individuals with physical and psychiatric disabilities. “Needlessly isolating such individuals, the Court wrote, is a form of discrimination based on disability—discrimination that perpetuates unwarranted assumptions about their capabilities and their worthiness to participate in community life. The Court found that institutional confinement deprives people of what is valued most in life: family relations, social contacts, work, educational advancement and cultural enrichment. In interpreting the ADA, the Court relied on the ‘integration mandate’—a regulation issued by the U.S. Department of Justice requiring public entities to ‘administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities.’[28 C.F.R.§ 35.130(d)]. The Court also relied on a regulation requiring public entities to make ‘reasonable modifications’ to avoid discrimination on the basis of disability,” summarized Bazelon5.
I think the fact that a recovery model of care hasn’t been applied to treating eating disorders highlights a unique prejudice found both within and without the mental health care system toward individuals who battle these conditions. I have my own opinions as to why our voices are given little heed – including that anorexia is widely perceived as a superficial obsession with thinness when in actuality it masks psychological distress far more complex, as well as many professionals’ conviction our opinions should be dismissed as the irrational notions of “malnourished, broken brains.” But this prejudice is a discussion to save for another time.
I do think it’s important to emphasize however that severe and enduring eating disorders – along with long-term substance abuse — are very misunderstood conditions. Both often have little to do with their outward manifestation, but are behaviors individuals resort to to cope with undiagnosed and complex, underlying conditions, life distress, “problems in living” (as Thomas Szasz would say), poor socio-economic circumstances and barriers, etcetera. It has always struck me as odd that much of the addiction community notes how many substance abusers have “co-morbid” mental health conditions. This way of looking at things is somewhat misleading, in my opinion. For some individuals, the “co-morbid” mental disorder does not simply exist alongside the addiction; the mental disorder is what causes the addiction. The same can be said for most people who battle eating disorders. It’s what underlies that diagnosis that is the true “disorder.” (While I take issue with our current system of “mental disorder” labeling in general, I’ve written about that subject elsewhere on this site.)
Substance abuse and eating disorders share common ground in not only being possibly the most stigmatized and misunderstood mental disorders in the nation, but in that both conditions’ treatment have been largely hijacked by private, residential treatment centers mysteriously sanctioned as sound medical care by our government. I wonder if the eating disorder and addiction communities could reap gains by joining together to fight to eliminate stigma and obtain greater funding to establish more recovery model-oriented treatment alternatives.
I’ll end this somewhat disjointed, final post by exhorting readers to also contact their local media outlets. If Donald Trump’s bewildering domination of the Republican primary contest demonstrates anything it is this: The only people with power in America today are 1) The media, 2) Entertainers/celebrities, and 3) Big Money. Consumers, voters and even good-hearted politicians have minimal power as compared to these Big Three, if you ask me. If we want to have any hope in forcing all sectors of society to view and treat severe eating disorders through the recovery model paradigm which should have been applied to us long ago, we have to get the media and celebrities involved in our campaign. Otherwise, the eating disorder treatment conglomerates will continue to hold sway over the lives of people who are either dying or living miserably, all unnecessarily.
House of Representatives:
Theodore Deutch, FL
Zoe Lofgren, D-CA
Ileana Ros-Lehtinen R-FL
Paul Tonko, D-NY
David Young, R-IA
Leonard Lance, R-NJ
David Price, D-NC
Alcee Hastings, D-FL
Matt Cartwright, D-PA
Robert Dold, R-IL
Brendan Boyle, D-PA
Collin Peterson, D-MN
Keith Ellison, D-MN
Erik Paulson, D-MN
Amy Klobuchar, MN-D
Kelly Ayotte, R-NH
Shelley Moore Capito, R-WV
Tammy Baldwin, D-WI
*I’d like to extend a special thanks to Marsha M., the one reader from Connecticut who, over the past eight months, clicked the “donation” button on my Web site, in an effort to support my writing.
2Interview with Ira Burnim, legal director of the Bazelon Center, in August 2015.
4Touyz, S. & Hay, P. (2015). Severe and enduring anorexia (SE-AN): In search of a new paradigm. Journal of Eating Disorders, 3(26). http://www.jeatdisord.com/content/3/1/26
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