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.