State of the Eating Disorder Industry Address — An Advocate’s Perspective

2019 is upon us. In some ways, it only seems like yesterday when the fear of an apocalyptic Y2K meltdown was staring us in the face. What was to become of these relatively new personal computers upon which our lives were becoming more dependent? Federal sources estimated that in the United States alone, year 2000 preparations cost approximately $100 billion, 8.4% of which was spent by the US government. CNN estimated that worldwide, approximately $200 billion was spent in preparation.

Although there were very few glitches reported, purportedly the expenditure of money was regarded as valuable since it resulted in a heightened level of knowledge among higher-level executives of the importance and vulnerabilities of information technology.

Facing purported dangers and challenges. Addressing issues. Recognizing that problems exist. Not backing down from adversity. And finally, identifying chaos where it exists so that it may be brought to light and then, discussing it openly so that order can be injected into a chaotic equation. Without a sense of order, chaos reigns, randomly and notoriously and people are inevitably the victims of these disordered circumstances.

Eating Disorder Industry

When one is a frequent critic of an institution, person, entity or industry, it is almost human nature to be dismissive of the “plaintive cries of a seemingly lone wolf.” In some instances dismissiveness may be justified. For others, to be dismissive one does so at their peril.

Perhaps now more than ever, the eating disorder industry is immersed in fractured chaos. And yet, who are the victims? Parents and our loved ones who suffer from this disease are paying the price for this chaos with their dearest blood.

Residential treatment programs are now almost uniformly owned and operated by private equity entities. Expansion of these programs is not based on medical need but instead is based on financial need to meet future multi-million dollar debt requirements. Rapid expansion also means these facilities are not being staffed by employees and professionals who have been thoroughly vetted, trained and educated. And these treatment programs are not supported by independent, objective third party, scientific studies.

The term “evidence-based treatment” has become almost a punch line instead of a reliable, dependable, objectively based term of art that parents can rely upon when making one of the most important decisions of their lives. For example, the National Eating Disorders Collaboration includes the following as examples of “evidence-based treatment:” Family based Therapy; Cognitive Behavioral Therapy; Dialectical Behavioral Therapy; Self-help approaches; Nutritional management; Medication and Complementary treatment. In 2016, BMC Medicine posted the following: “Evidence-based practice in eating disorders incorporates three essential components: research evidence, clinical expertise, and patient values, preferences, and characteristics. Conceptualized as a ‘three-legged stool’ by Sackett et al. in 1996 (BMJ), all of these components of evidence-based practice are considered essential for providing optimal care in the treatment of eating disorders.” Equine therapy, art therapy, yoga therapy, dance therapy have all been referred to as being “evidence-based” treatment. It is becoming ever increasingly difficult to differentiate the charlatans from the champions. 

A federal district court judge in Texas recently ruled The Affordable Care Act (“Obamacare”) to be unconstitutional. This ruling, which has not been stayed pending appeal, would throw out the entire act. Pre-existing conditions, a cap on the amount an insured would have to pay in uninsured costs, and other protections for those suffering from this disease could be eliminated.

Any person, counselor or treatment center is allowed to concoct approval ratings, satisfaction rates, or artificially inflate their “success” and advertise on the internet without repercussion.

Incompetent and untrained counselors are interacting with our children. Sexual predators have access to the most vulnerable and trusting souls. A vetting process designed to increase the likelihood of safeguarding our children and finding these predators before they are employed is not being utilized.

Cost of treatment continues to escalate as parity laws are being ignored or blatantly disregarded. Insurance entities openly take advantage of their insureds by including guidelines in policies which are not sanctioned by the American Psychiatric Association and which are not included in the DSM-V.

Congress has turned its back on those suffering from this disease. Other mental illnesses far less prevalent are receiving federal funding which far exceeds that which is being doled out for eating disorder research. Coalition entities which funnel money from private equity firm owners to lobbyists have their own agenda which is reflected in the specific bills being addressed by those lobbyists. In the past, some parent groups which have approached those entities with their concerns and ideas, have been politely listened to, then disregarded.

Up until now, the research doctors, scientists, and university based medical professionals, those persons who constitute our best hope for progress through research and then implementation of actual “scientifically based” treatment modules have been for the most part, isolated in their “silos of knowledge.” Mass collaboration of our greatest minds to address this insidious disease has been illusive or non-existent.

Multi-million dollar grants awarded for international research and greater understanding of this disease are sparsely doled out.

And our children, our loved ones, continue to die at the rate of one life claimed every 62 minutes.

Address the Issues

What are the solutions? What are the possibilities? Where is the courage of our convictions to take strong action? Answers to those questions are left to those far wiser and more insightful than me. But, unless there is an open dialogue, unless we raise our voices, until there are more understanding ears, and hearts, and minds, and souls, chaos will continue to reign and lives will continue to be taken. And so, future articles will be dedicated to addressing concerns with the hope that discussion is spurred, and perhaps, renewed inspiration and passion will spring forth.

In the coming weeks, this site will address, among other issues:

Analyzing Eating Recovery Center’s “ground breaking” study on binge eating disorders;

Analyzing the Residential Eating Disorder Consortium’s four-part STEP program which was announced in November 2018. A preview … there are some positive attributes set forth in the STEP program and will certainly be noted along with perceived deficiencies and recommendations for improvement;

Review of the ED Coalition’s past lobbying efforts, money spent and what the recent Court ruling means to those efforts;

Review of recent court cases highlighting battles against insurance entities and their handling eating disorder claims;

Proposals for joint collaboration amongst interested organizations to establish an Ethics Review Board to review and process complaints against unscrupulous counselors or programs and to take affirmative action against those persons. Reprobates like Jason Scott Calder, who plead guilty to five (5) felony counts involving sexual activity with a patient at the New Haven residential treatment center in Utah and Michael Jacksa, who is accused of sexual activity with at least five (5) different patients at Timberline Knolls must not be allowed into our community only to destroy our loved ones who are suffering from this disease;

Bringing to light other issues or concerns which families or advocates may have.

The chaos which defines the eating disorder industry cannot be allowed to fester. When the quest for the almighty dollar exceeds the needs of those suffering from this insidious disease, we pay with our lives, the lives of our children, the lives of our loved ones. Standing on the sidelines is no longer an option. The shame and guilt associated with this disease must be addressed directly and openly. Eating disorders can no longer remain in the closet, in the darkness with its past hidden brethren.

2019 and the future await. Let’s get to work.

One thought on “State of the Eating Disorder Industry Address — An Advocate’s Perspective

  1. Thank you so much for everything you have written here on both this post and your entire blog. You have verbalized so much of my own private frustrations on the “treatment industry” that fails us time and again. The relapse rate in this population is huge, and having stood on the inside of treatment, I fully understand why. Many of the practices, poor staffing and training of individuals, and these companies seeing us as dollar signs instead of individuals who need help, causes more harm than good. I wish I had a magic wand to fix it all, or at least a voice powerful enough to finally be heard.


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