Most people know the term “a red herring.” A red herring is a diversion, something that misleads or distracts from a relevant or important question. In a literal sense, there is no such fish as a “red herring.” Instead, it refers to a particularly strong kipper, a fish (typically a herring) that has been cured in brine or heavily smoked. This process makes the fish particularly pungent smelling and with a strong enough brine, turns its flesh reddish.

The term was popularized in the early 1800s by English pamphleteer, William Cobbett. He wrote a story about dragging a kipper (a strong-smelling smoked fish) across trails to divert hounds from chasing a hare.

A red herring may be a logical fallacy or a literary device that leads readers or audiences toward a false conclusion. And we must be particularly careful to know the difference between a “red herring,” and actual issues which confront us.

On September 5, 2019, the case of Susan Hering, on her own behalf and as the representative of her beneficiary daughter, and on behalf of others similarly situated vs. New Directions Behavioral Health, LLC and Blue Cross Blue Shield of Florida, Inc., Civil Action No. 6:19-cv-01727-RBD-DCI was filed in the United States District Court for the Middle District of Florida.

The case was assigned to the Honorable Roy B. Dalton, Jr. Judge Dalton was nominated to the bench by President Barack Obama in 2011. He is the 2019 recipient of the Chief Justice’s Distinguished Federal Judicial Service Award. This award recognizes an active or retired federal judge for outstanding and sustained service to the public, especially as it relates to the support of pro bono legal services. In addition, Judge Dalton was recognized for his work in assisting plaintiffs pro se, that is those litigants who cannot afford an attorney and who represent themselves.

So why are those facts significant? Judge Dalton is the type of judge who is looked upon in the legal community as being more “plaintiff friendly.” Initially, this bodes very well for the plaintiffs in the Hering case.

And why is this significant and what does this have to do with the eating disorder industry?  The Hering case in many ways mirrors the Wit case filed in San Francisco by the Zuckerman law firm. The same law firm represents the plaintiffs in the Hering case. Brian Hufford, who spoke at the 2019 AED ICED Conference in New York, upon being admitted for the Hering case will be one of the lead attorneys. And this time, Blue Cross is the prey.

Briefly Revisiting Wit

On March 5, 2019, a federal district judge in San Francisco issued a sweeping judgment holding that United Behavioral Healthcare/Optum (“UBH”) on a class wide basis violated its fiduciary duties and improperly denied payment for treatment. The ramifications and remedies for this bad faith conduct have yet to be finalized.

The judge in the Wit case found that UBH implemented guidelines which did not comply with any applicable standards of care, that UBH sought the input of their accounting department to lessen the benefits they would be forced to pay and they acted in bad faith toward the persons, their insureds, with whom they have an absolute duty of good faith and fair dealing.

Assuming the court grants Plaintiffs’ request for remedies, a Special Master will be appointed to create treatment guidelines with which UBH will be forced to adhere. UBH will be forced to comply with those standards of care. Its employees involved in the claims process, from the lowest claims reviewer to its management staff to its outside peer review doctors will all be required to be retrained by a Special Master regarding those guidelines, ERISA and bad faith refusal to comply with ERISA. Its accounting and finance departments will be banned from having any input. This Special Master will oversee the claims process and the guidelines. UBH will be prohibited from utilizing its former, unfair and biased guidelines. And the eating disorder industry has been shut out from drafting those guidelines.  

The rules will be changed. Fairness and equity will be mandated. And the class members, the people insured by UBH will finally receive what they have been paying for; fair, objective insurance benefits.

There will be literally hundreds, if not thousands of eating disorder claims resubmitted by the 50,000 plus class members. (Recall the daughter of one of the named plaintiffs suffers from eating disorders and was denied admission to Monte Nido) And yet, no eating disorder specific guidelines will be utilized in assessing eating disorder claims. And why is that?

Because there ARE no eating disorder specific guidelines generated by the eating disorder industry which were looked upon as being authoritative enough to establish the applicable standard of care.

The eating disorder industry in the United States has not been able to collaborate and devise generally accepted, authoritative guidelines. Guidelines which establish generally accepted standards of care. Guidelines that could have been utilized in the Wit case. Guidelines that could have been imposed upon the largest provider of behavioral healthcare benefits in the United States. Guidelines that could have been utilized to battle insurance providers and to contradict their “toady” peer review doctors who unfairly deny requests for coverage. Guidelines that could have saved lives.

It is too late for the eating disorder industry with regard to the Wit case.

So, a Special Master will be tasked to do what the eating disorder industry has not been able to do in its entire existence, that is, to craft generally accepted eating disorder guidelines with which an insurance benefit provider will have to comply.

Let that sink in.

A Special Master, presumably one or more people who do not have a lifetime of training in treating eating disorders will be tasked by a United States District Court judge to draft treatment guidelines for eating disorders. Guidelines with which UBH will have to comply.

And if each and every person and organization who claim to have the expertise, desire and ability to craft guidelines designed to save the lives of those suffering from eating disorders do not have overwhelming and incredible feelings of shame, they damned well should.

YOU have failed the eating disorder community.

YOU have failed each and every person whose lives were ripped away by eating disorders.

YOU have failed each and every family who had a loved one taken by eating disorders.

YOU have failed each and every person who struggled, fought with and were scarred and damaged by eating disorders.

YOU … HAVE … FAILED!

And while Rome  burned, what has the eating disorder industry been doing? At the end of August, a group which calls itself either the ED Organizations Reunion or the Eating Disorders Leadership Summit conducted a virtual meeting. [Never mind the fact that the name was purloined from a group which held meetings in 2016 and 2017 and then dissolved because of a lack of consensus and vision.] AED, EDC,  Alliance for Eating Disorders, NEDA, REDC, ANAD, IAEDP, and F.E.A.S.T. met [virtually] for a “semi-regular meeting of organizations.” “Among the topics were a talking points project and how to productively address controversial issues in our field.”

One of these so-called leaders issued a statement that, “The project to agree upon statistics and talking points has been in the works for a few years, and led by informationist Millie Plotkin from the Eating Recovery Foundation’s Eating Disorders Information Gateway. (EDIG). A draft copy of the talking points is being circulated and vetted by experts in the field and we hope it will be published jointly and housed on the AED website. Having good numbers on who are affected by eating disorders that is well-sourced is an important milestone for the field.”

The final statement of this group quoted herein states, “The eating disorders community has historically avoided both conflict and collaboration, but there is too much suffering that is going unaddressed and no time to waste,” one person said after the meeting. “Where there are differences of opinion we need to face them directly. Where there are opportunities to do good work together we need to support one another.”

After decades of in depth study and research are we left with the reality that the “fearless leaders” of these organizations have finally agreed to a talking points project and how to productively address controversial issues in our field? That is it?

Nothing about pushing for funding and additional grants for research? Nothing about emphasizing treatment for those who cannot afford treatment? Nothing about recognizing the lives of those who have been taken by this disease? Nothing?

YOU HAVE FAILED US. Even our court system recognizes that you have failed us.

And yet, is it too late? Can things be salvaged?

The Hering case … a second bite at the apple

Months ago, we stated that there are other cases pending in the United States in which insurance providers’ baseless guidelines are at issue. And now, we present to you the Hering case.

Like the Wit case, Hering is a text book example of an insurance company and its servicing arm being out of control, drunk with power and concerned exclusively with increasing their profit margin.  And similar to Wit, when the Hering plaintiff pleads that Blue Cross’s medical necessity criteria are inconsistent with generally accepted standards of care, no reference is made to eating disorder industry generated guidelines as constituting generally accepted standards of care. The same can be said about:

1. Admission criteria for residential treatment;
2. Residential continued treatment criteria;
3. Medical necessity criteria, and;
4. Medical necessity criteria development and adoption processes;

The closest the Hering lawsuit comes to referring to eating disorder criteria is a passing reference to the American Psychiatric Association Practice Guidelines for the Treatment of Eating Disorders, Third Edition.

The Hering case makes reference to the eight (8) generally accepted standards of care relied upon by behavioral healthcare professionals adopted in the Wit case.

In short, the eating disorder industry is on the brink of losing the ability to determine and dictate the applicable standards of care to treat eating disorders. If the plaintiffs are successful in the Hering case and the Court through a Special Master implements generally accepted standards of care and treatment guidelines which insurance companies are required to adopt and comply with, then the eating disorder professionals will have completely lost their way. Treatment will be dictated by the court system … and not by medical, mental health and research professionals.

If the eating disorder industry does not find a way to expeditiously  create and implement generally accepted criteria and guidelines for treating this deadly disease, then they would have once again, failed us, failed the patients, failed the families and failed the survivors. Time waits for no one.

The clock is ticking.

The time for bold action is passing us by.

And the cost for this inaction is being paid once every sixty-two (62) minutes.

 

 

 

 

 

On August 13, 2019, WW (“Weight Watchers”) launched its WW/Kurbo app, an alleged free nutrition and weight-loss app for children as young as eight (8) years old. Issues and questions were immediately raised concerning the release of this app. And with regard to the eating disorder industry, the initial inquiry must first be, why should the heart and soul of the eating disorder industry care about this particular app? Shouldn’t the criticism and complaints be left to the fringe elements in the industry? Yes, we understand that this app could possibly lead to disordered eating. But, isn’t this the bailiwick of the HAES movement, the neo-NEDA and the militant anti-diet and weight loss movement? Isn’t this really their monkeys?

The Background of the App

WW acquired the nutrition app Kurbo in 2018. It then spent a year purportedly developing it, allegedly consulting with experts and adding features like breathing-exercise instructions, a Snapchat-inspired interface and multi-day streaks to encourage “regular” activity. The app was designed to allow children (or parents on their behalf) to enter their height, weight, age and health goals, then begin logging what they eat.

The WW/Kurbo app ranks food choices using a purported, Stanford University developed “traffic-light” system: Green items are “go foods” that can be eaten freely; yellow foods should be consumed in moderate portions; and red foods should make kids “stop and think.” For a fee—starting at $69 for a month—weekly video coaching is also available. Coaches employed by WW/Kurbo are allegedly trained to pick up on signs of disordered eating or unhealthy weight loss.

WW/Kurbo explained that the app was designed to be a new tool for the millions of “obese” children in the United States struggling with their weight. They also anticipated outrage for potentially furthering unhealthy body standards and eating behaviors. With regard to the latter issue, the eating disorder community did not disappoint.

Eating disorder counselors, dietitians, nutritionists, advocates and activists grabbed their pitch forks and burning torches and aggressively spoke out against it. An eating disorder treatment center based in New York reinstated its campaign against WW. It generated a petition demanding the WW/Kurbo app be taken down. (The petition currently has in excess of 110,000 signatures). It is planning a demonstration at 8:00 o’clock a.m. on Friday the 13^th of September at WW’s corporate headquarters in Manhattan just south of the Design District.

Demands are being made that all eating disorder organizations issue statements condemning the WW/Kurbo app. And in all circles, the statistic that 95% of people who go on diets will regain all of the weight they lost on that diet within one (1) to five (5) years is being bandied about as the “gospel truth.”

And yet, there is so much more to these issues than that which meets the eye. So, let’s address some of the myths and parochial thinking which are so prevalent and which continue to haunt the eating disorder community and industry today.

The Myth of the 95% Failure Rate

The Anti-Diet and Weight Loss crowd spearheaded by the HAES movement trumpet the statistic that 95% of people who go on diets will regain the weight they lost, if not more, within one (1) to five (5) years. That statistic has been quoted widely over the last four decades in Congressional hearings, diet books, research papers and seminars. 

And yet, according to Dr. Thomas Wadden, a professor of psychiatry at the University of Pennsylvania,  “That 95 percent figure has become clinical lore … There is no basis for it, but it’s part of the mythology of obesity.” [emphasis added]

So, one must ask, what is the origin of this number? According to Dr. Kelly D. Brownell, the former director of the Yale Center for Eating and Weight Disorders, and now the Dean of the Sanford School of Public Policy at Duke University, “The number was first suggested in a 1959 clinical study of only 100 people. The finding was repeated so often that it came to be regarded as fact.”

Research indicates the oft-quoted, 95% figure does not come from random sampling, but instead from a very limited study of 100 patients treated for obesity at a nutrition clinic at New York Hospital in the 1950’s. In this study, there was no oversight, no laboratory conditions, no control group, no objective reporting and obviously, no credibility. In 1959, its authors, Drs. Albert Stunkard and Mavis McLaren-Hume, published a paper in which they concluded, ”Most obese persons will not stay in treatment, most will not lose weight, and of those who do lose weight, most will regain it.”

However, years after the study was released, Dr. Stunkard revisited the study and remarked, “… the study has little relevance to the current understanding of how to control weight … The 100 patients in the study were ”just given a diet and sent on their way.” [emphasis added]

He also stated “That was state of the art in 1959 … I’ve been sort of surprised that people keep citing it; I know we do better these days.” These statements come from the architect of and primary author of the study!

Before he passed away in 2014, as part of his on-going research, Dr. Stunkard stated, “The intervening years have brought significant changes to the treatment of obesity, the most important of which, has been the introduction of behavior modification techniques.”

Nonetheless, the Anti-Diet and Weight Loss crowd led by the HAES movement use this statistic to suggest that sustainable weight loss is wholly impossible and trying to lose weight is simply an exercise in futility. Other groups attempt to use the statistic to suggest that the only way someone with obesity can ever succeed is by means of drugs or surgery.

The HAES movement claims the Diet and Weight Loss Industries are conducting a “War of Obesity.” HAES further states that “We’ve lost the war on obesity.” That, “The war on obesity has taken its toll.”  And then it characterizes itself as, “Health at Every Size is the new Peace Movement.” But, if HAES and the Anti-Diet crowds are using outdated, inaccurate statistics to support its arguments, then it is attempting to fight a 21^st Century war utilizing 17^th Century weapons.

If an individual’s goal is to lose every last ounce of fat they want and then keep it off, undoubtedly, that goal is unrealistic and mostly unattainable. But, losing weight and keeping it off is not. By way of example, one can study the Look AHEAD trial. The Look AHEAD trial is considered one of the more personalized, involved and lengthy weight management studies ever conducted. Purportedly, after eight years, nearly 50 percent of participants were reported as maintaining losses of greater than 5 percent of their presenting weights, and more than a quarter of them were maintaining losses of greater than 10 percent. Of greater significance is the fact that all BMI groups in that trial had comparable improvements in fitness, physical activity, LDL cholesterol, triglycerides, blood pressure, fasting glucose, and HbA1c at 1 year and continuing thereafter.

Further, if the “War on Obesity” is over and a failure, people would not be investing vast amounts of money, and gambling with their very health in the Diet and Weight Loss Industries. And yet, we know that that is not the case.

So, how prevalent and financially viable are the Diet and Weight Loss Industries?

The Diet and Weight Loss Industries

The diet and weight loss industries sustain financial growth on an annual basis.  On a global scale, the Global Weight Loss and Obesity Management Market is forecast to exceed more than $253.1 Billion [US] annually by 2024. ONE QUARTER OF ONE TRILLION DOLLARS ANNUALLY.

The total U.S. weight loss market grew at an estimated 4.1% in 2018, from $69.8 billion to $72.7 billion. The total U.S. market is forecast to grow 2.6% annually through 2023.

Commercial chains as a group posted an 18% increase in revenues in 2018, to $3.74 Billion. However, this segment of the market is forecast to grow not quite as strongly—8.6% in 2019, and 6.0% per year through 2023.

With regard to weight loss surgeries, an estimated 239,000 bariatric surgeries were performed in the U.S. in 2018, constituting a $5.98 billion market. The number of surgeries continues to grow about 5% per year.

Companies like Weight Watchers, Jenny Craig, Nutrisystem, Medifast, Noom, continue their financial growth and advertising blitzes.

Millions of people in the United States and throughout the world, the publicly traded corporations, the medical profession and the United States government recognize that obesity is a serious health issue and must be addressed. This is also proven by the vast amount in research dollars spent on studying Obesity.

Research funding regarding Obesity

In 2015 alone, the NIH spent an estimated $900 million on obesity research.

In 2016 alone, the NIH spent an estimated $965 million on obesity research.

In 2017 alone, the NIH spent an estimated $999 million on obesity research.

In 2018 alone, the NIH spent an estimated $1.055 billion on obesity research.

In 2019 alone, the NIH is estimated that it is going to spend $1.097 billion on obesity research.

By way of comparison, from 2015 through 2019, the NIH will be spending an estimated total of $169 million on eating disorder research.

To summarize, Obesity research garners $5.016 BILLION during this time period.

Eating disorders garners $169 million during this same time period.

This amount of financial expenditure by the NIH alone bolsters the reality that the Diet and Weight Loss Industries are flourishing. They are addressing a very real health problem according to the United States government. And the eating disorder industry is left sitting at the kiddie’s table while the grown-ups talk about life and death issues.

The eating disorder industry has a very large, very real problem. And that problem is only growing and will not be going away any time soon.

“Houston, We Have a Problem”

The reality is the eating disorder industry is a multi-billion dollar industry. And the only entities which appear to be treating it that way are the private equity firms and the insurance companies. Even the National Institutes of Health are treating it as of relative unimportance. To this end, the NIH spent a comparable amount of money on eczema research, Caregiving research, breast feeding, lactation and breast milk research, back pain research, and headache research. Again, breast feeding and lactation research receives approximately the  same amount of NIH funding as eating disorder funding!

To exacerbate this calamity, up to this point, it appears as if the eating disorder industry has not embraced collaboration with or partnering with “Big Pharma,” the “Diet and Weight Loss Industries” or the insurance entities. The impact of this short-sightedness, unwillingness or inability for collaboration is being felt to the greatest extent by the patients and victims of this insidious disease. And we must question why this collaboration is not being aggressively pursued.

If the WW/Kurbo app is as ill-advised and misinformed as the eating disorder counselors, dietitians, nutritionists, advocates and activists would have us believe, at what point does at least part of the blame fall upon the eating disorder industry as a whole? Why haven’t the eating disorder organizations actively reached out to the Diet and Weight Loss Industries and convinced them that they have a large and ever-growing public relations problem? That they can salvage their integrity (and increase their profits) by openly embracing collaborating with eating disorder professionals. That through such collaboration, health and wellness apps which include substantive, authoritative information regarding food, the impact food has upon the brain and general health and wellness can be generated. Instead of being confronted with burning torches and pitchforks, they would have substantive and well-researched information originated by medical and mental health professionals.

At the same time as a result of this collaboration, eating disorder organizations and professionals would have access to greater and different avenues of funding, marketing, advertising and information. The very manner in which society thinks about and looks upon eating disorders could evolve. Additional avenues of funding for research being conducted by the National Center of Excellence for Eating Disorders and other reputable professionals would be possible.

But, in order to be treated as serious professionals conducting serious research into this serious, life threatening disease, the eating disorder industry must first start to comport itself as if it was a professional, knowledgeable, diverse multi-billion dollar industry.

This is our circus. These are our monkeys. We need to embrace that reality. The reality that we must collaborate … or our loved ones will continue to die.

White Privilege. White Male Privilege. White Supremacy. White Male Supremacy. Capitalism. Colonialism. Weight Stigma. Thin Privilege. Weight Discrimination. Weightism. Racism. Ageism. Healthism. Homophobia. Transphobia. Classism. Ableism. Christian Privilege. Cisgender Privilege. Cis-boom-bah privilege. Heterosexual Privilege. Upper Class Privilege. Middle Class Privilege. Male Privilege. Female Privilege. First World Privilege. Point of Personal Privilege. And many others.

The list is endless and exhausting. Words and concepts. Political and societal issues. They all portray and represent division, the blame game, finger pointing and victimization. At the same time, they all minimize personal accountability and achievement. As our children continue to die from eating disorders, Social Injustice Warriors seek to utilize these political or societal issues to infiltrate the eating disorder industry to spread their messaging.

Nearly every aspect of the human condition can be classified as some sort of “privilege.” So, how does one sort out and address privilege with regard to eating disorders being treated by mental health care professionals? And how does one relegate the vast majority of “privilege” which pertain to the human condition and have nothing to do with eating disorders?

First with regard to “Obesity,” last month a question was posed as to whether “Obesity” should be included as a mental disorder when the new DSM is released in the future. The reaction was swift, sure and expected. One would have thought I premiered the anti-Islamic film, “Innocence of Muslims” before the Supreme Leader of Iran. Although I did not take a stand either way and instead, merely recited what university-based professors had opined, accusations of “White Privilege!” “White Supremacy!” “Typical White Stigma,” and even, “Racist!” were spewed forth by the Social Injustice Warriors. The hatred was obvious. The empathy and understanding were conspicuously missing. The Social Injustice Warriors assembled the kindling and were prepared to “burn all who disagree with them at the stake.”

Due to the universal and uniform outcry that “Obesity” is not a mental disorder and with the firm understanding that “Obesity” is certainly not an eating disorder, Obesity and the privileges and stigma associated with it clearly do not belong in the realm of eating disorders and are beyond the realm of this article.

Contrarily, weight stigma has been shown in peer reviewed research papers to be a consideration when diagnosing and treating binge eating disorder. As such, weight stigma as it pertains to binge eating disorder is included.

“Privilege” Defined

Before proceeding further, we need a firm, workable neutral definition of “privilege.” Stella Morabito, an author and columnist defines it as, “Privileges — whether material, social, or professional—come from being male, healthy, prosperous, safe, white-skinned, heterosexual, non-gender-dysphoric, or any number of things that may cause you to experience the world in a different way than somebody who comes from a different category in today’s social matrix.”

If that definition and explanation can be accepted as being evenly remotely accurate, it would appear that lack of individual accountability, divisive conduct, victimization, finger pointing and blame are all inextricably intertwined with most “privilege.”

Social Injustice Warriors would have us believe that “privilege” must first be identified, then eradicated root and stem so that we may achieve equal results for all. Social Injustice Warriors embrace the belief that equal opportunity means equal results. Further, a number of Social Injustice Warriors have brazenly stated that if you do not fully embrace their mindset and admit your own ‘privileges” then you are a bigot.

This is the all too familiar plaintive cry of a weak and unsubstantiated hypothesis. If a person does not have facts, logic or reason supporting their position, then attack the character of those persons who oppose you until they bend to your will. There is no room for compromise. Dissenting voices must be quashed. You must ostracize and separate from them on all social media. Your view is the only viable view!

Despite no support in research or peer reviewed studies, Social Injustice Warriors are attempting to bring their misguided views into the eating disorder industry. They insist that perceived “privilege” and social injustice ills must be included and addressed in the therapeutic, counseling process in treating eating disorders. Their thinking is not only misguided, but detrimental and potentially dangerous to those suffering and damaging to the treatment of eating disorders.

Why Social Injustice Cannot be Included in the Counseling Process

No Peer Reviewed Studies or University Based Research Support the Inclusion of Social Injustice Issues

I could locate no peer reviewed studies supporting the view that Social Injustice issues should be included in the therapeutic arena or counseling to treat eating disorders. Similarly, I could not locate any peer reviewed studies or university supported research indicating that an effective counselor must first recognize and embrace their own “privilege” in order to be the most effective counselor possible.

Certainly, there are articles which indicate weight stigma can be a consideration in the causation or exacerbation of binge eating disorders. But, those articles are silent on the manner in which weight stigma should be addressed in the sanctity of the counseling room.

But that does not deter Social Injustice Warriors from beating their drums of “privilege.” So, we must continue to refute.

White privilege can trace its roots back to at least 1988 when activist Peggy McIntosh published her essay, “White Privilege: Unpacking the Invisible Knapsack.” All of the alleged “privileges” set forth in the first paragraph of this article have been bandied about by the liberal arm of society for a number of years. And yet, no authoritative, independent peer review studies nor university-based research exist indicating its importance and recommended inclusion in the treatment and recovery from eating disorders. The DSM-V does not include any mention of racism, bigotry or prejudice, let alone the various “privileges,” in its text or index. Nor does the American Medical Association address “privileges” in the treatment of eating disorders. When one questions the reasons for this, one inescapable conclusion is manifest.

And that is, “privilege” is a set of political and social issues championed by social liberals alone. Mainstream society cannot even agree as to the definitions nor the application of privileges. It is axiomatic that ethical mental health providers would not include “privilege” or whatever the “stigma de jour” may be in the counseling process.

Quite simply, the treatment of eating disorders must be free from the political agendas spewed forth by Social Injustice Warriors. Privilege and “stigma de jour” in the context of counseling is not supported by university programs, ethical researchers or respected, objective eating disorder professionals.

The reasons for this are legion.

The Brain of the Eating Disorder Patient cannot process the complexities

Numerous studies and research exist indicating that eating disorders are biologically based and certain areas of the brain tend to be impacted the most.

Research professionals examining the brains of people with eating disorders indicate that the Hypothalamus, Pituitary Gland and Amygdala (“the HPA Axis”) release vital neurotransmitters, or chemical messages which regulate mood and appetite. Researchers at the University of Maryland Medical Center sought to understand the abnormal levels of serotonin, norepinephrine and dopamine present in persons suffering from eating disorders.

This study further found, “Serotonin is involved with well-being, anxiety, and appetite (among other traits), and norepinephrine is a stress hormone. Dopamine is involved in reward-seeking behavior. Imbalances with serotonin and dopamine may explain in part why people with anorexia do not experience a sense of pleasure from food and other typical comforts.”

Dr. Walter Kaye of UC San Diego writes, “… ill persons with AN (anorexia nervosa) tend to perceive their actions as incorrect or flawed and are highly sensitive to criticism, rather than being able to appropriately proportion reward and punishment in order to learn from experience.”

Taken together, these studies suggest a complex interplay between weight status, brain structure, and optimal brain functioning. Brain matter actually shrinks during anorexia nervosa and takes time to recover. Six months after full weight restoration the brain often is not yet structurally back to normal. These studies indicate that persons suffering from anorexia nervosa are typically cognitively impaired and require sustained time at a healthy weight for cognitive impairment to fully restore.

With the subtle and complex issues present in understanding “privilege” and “stigma,” at what point is a person in treatment for eating disorders able to full grasp all of these concepts? What objective brain tests can the Social Injustice Warriors point to indicating that cognitive impairment in the brain of a person suffering from eating disorders has been restored to a level that “privilege” and “stigma” can be full understood and included as part of a recovery program?

In fact, without the restoration of sufficient cognitive impairment, the potential for harm and perpetuating the cycle of treatment, lapse, treatment, lapse increases.

Insurance Companies Will Not Pay

It is a fundamental tenet that insurance companies do not and will not pay for “experimental or investigative treatment.” Courts are universal in holding that where insurance policies contain a “no payment for experimental treatment clause,” insureds/patients do not have the right to receive payment for this type of treatment.

The obvious reasons insurance companies use exclusions to restrict experimental procedures are to limit their financial risk, cost containment, and to ensure the practice of safe and effective medical approaches and treatment and the elimination of uncertain and untested procedures.

Ordinarily, a medical device or treatment or mental health treatment is considered experimental if: “Reliable Evidence shows that the consensus of opinion among experts regarding the drug, device or treatment or procedure is that further studies or clinical trials are necessary to determine its maximum tolerated dose, its toxicity, its safety, its efficacy, or its efficacy as compared with the standard means of treatment or diagnosis.”

Reliable Evidence means “… published reports and articles in the authoritative medical and scientific literature; the written protocol or protocols used by the treating facility or the protocol(s) of another facility studying substantially the same drug, device or treatment; or the written informed consent used by the treating facility or by another facility studying substantially the same drug, device or treatment or procedure.”

These standards can be so strictly interpreted that treatment for eating disorders in free standing eating disorder centers are not covered by Tricare. On its website, Tricare states that it only covers services that are medically necessary and are considered proven. If treatment in freestanding eating disorder centers is not covered by Tricare and is not considered “proven,” is Tricare, let alone any insurance provider likely to pay for counseling involving “privilege” or “stigma especially when led by a counselor who believes that he/she must first identify him/herself as “a cisgendered, non-binary, historically oppressed person?”

As previously stated, no peer reviewed studies or university-based research exist supporting the view that Social Injustice issues should be included in the therapeutic arena or counseling to treat eating disorders. If a counselor or treatment center is fool hardy enough to include those issues on a substantial basis within its treatment regimen there is a substantial risk that the insurance provider will not approve payment for any future treatment. Treatment will not be obtainable.

And a greater number of people will suffer … suffer and die … and this time, in the name of Social Injustice.

Multitude of Additional Reasons

There are a number of other significant reasons why the Social Injustice Warriors should not be allowed to impose their ill-fated agenda in eating disorder treatment.

For example, does social injustice indoctrination apply to those who suffer from bulimia and binge eating alone? Or should those suffering from the other eating disorders also be subjected to this indoctrination? Is there any evidence that the effectiveness of social injustice indoctrination is dependent upon the sex and age of the patient and whether they come from a nuclear family unit?

What of the the most maginalized people in the eating disorder community, boys and men? Since certain divisive parts of the industry, led by the “neo-NEDA” place social injustice above all else, and have, for the most part turned its back on boys and men who suffer from this disease, should boys and men also be excluded from social injustice indoctrination? After all, aren’t men, particularly white men, the cause of many of the “privileges” the Social Injustice Warriors decry? In fact, as part of “privilege” indoctrination, will fingers be pointed and blame assessed against the fathers of those who suffer from this disease? After all, aren’t those fathers, especially the white fathers the root cause of the many ills the Social Injustice Warriors march against?

Despite all of this evidence, the Social Injustice Warriors will forever continue to misunderstand, disregard and deny the true, irrefutable obstacle to their rantings. That is, the power of the family unit.

The power of a strong, family structure. The foundation for building healthy personal relationships are the true source of all power and privilege. Only through these healthy personal relationships can a person learn deeply about the world, exchange ideas, get inspired, invent things, accept personal accountability and create independent communities. These are the surest paths to knowledge and joy. But, Social Injustice Warriors would even denigrate that reality.

The Roman philosopher, Plato urged that families should be abolished, replaced by Guardians appointed by the state. He opined that this was the best way to insure a unified, cohesive society free from favoritism [or privilege as we refer to it today.] One cannot help but believe that the Social Injustice Warriors embrace that philosophy and place society over the family.

Who are the Social Injustice Warriors and What Do They Stand For

Despite all of the evidence to the contrary, the Social Injustice Warriors will continue on their path to bring chaos to the eating disorder industry. When apologies are not expressed toward men who were belittled and ostracized by an ill-advised, pedantic social media post on Facebook and the only apology issued was to their fellow militant, slavish followers of HAES for having to remove the post, you realize these militant Social Injustice Warriors will stop at nothing to spread their poison through the eating disorder industry.

And so, who are these Social Injustice Warriors and what do they believe?

Social Injustice Warriors believe that eating disorders are disorders of systemic oppression.

Social Injustice Warriors believe that public health campaigns and individual healthcare providers who reliably target individual behavior as the pathway to help actually limits the impact that these interventions can have on health, while increasing the risk of shame and stigma being experienced by people who do not align with culturally defined acceptable behaviors or physical presentation of “health.”

Social Injustice Warriors believe that our current systems and institutions perpetuate a structure of privilege, status, and access to some bodies while restricting it from others. They believe that this is not health promoting. It is actually causing mental and physical harm and worsening the health of our society and its individuals.

Social Injustice Warriors who have infiltrated the eating disorder community believe in loving the eating disorder community but hating all aspects and opinions which do not kowtow to their views.

Social Injustice Warriors believe that anyone who disagrees with them has sinister and oppressive motives, are bigots and are “privileged.”

Social Injustice Warriors never seek a compromise or collaboration with reasoned, intellectual people in the eating disorder community.

Social Injustice Warriors who carry within them, deep pain because they have been scarred, bullied or hurt by society, have become the bullies, as they lash out in rage in order to seek revenge for the self-perceived injustices perpetrated against them.

What is even more remarkable is that the sensible, smart strong leaders in the eating disorder industry, the very persons who should be standing up to radical extremism while they are dedicated to protecting their patients and trying to save their lives, are so frightened of the loud, emotion-fueled pablum spewed forth by the Social Injustice Warriors that they have thrown in the towel on sanity.

Social Injustice Warriors stand for:

Ideological purity.

Compromise as weakness.

A fundamentalist belief in their own crusade.

Denying science.

Unmoved by facts.

Undeterred by new information.

A hostile fear of progress.

A demonization of the intellect.

Tribal mentality.

Intolerance of dissent.

Pathological hatred of all those who oppose their radical views.

They may can call themselves Social Justice Warriors. They may even call themselves militant HAES activists.

Although progressive, intelligent advocates shouldn’t call them that.

We should call them exactly what they are …

The Eating Disorder Taliban.

And the Eating Disorder Taliban cannot survive if we stand up to them with facts, reason, logic, intelligence and the strength, passion and love which can only exist within the family.

Continue reading →

 

August 10, 2019 would have been Morgan’s 26th birthday. Ordinarily, I am not one to post about”Angel-versary” dates. 

Was Morgan an angel? Oh Lord, No! In life she was more of a warrior. And in death, she remains a Warrior. Like her father, she was flawed. Yet, strong and resolute. She inspired while she was with us. Young people with whom she was in treatment have approached me as recently as last month saying how much Morgan inspired them.

August 10 passed quietly. A lunch with close friends. We laughed and told stories. And Morgan’s birthday would have stayed in that context. Then, life got in the way … again.

This past week, I was made aware of two more young people being taken long before their time. A beloved daughter in Colorado named Sarah. Tabitha Farrar, an eating disorder counselor and advocate in Colorado presented a heart wrenching podcast about Sarah and what her being taken meant to her. And lest we forget about why we continue to fight …

I was then contacted by a mother in the United Kingdom who had heard of the Morgan Foundation. Her beloved daughter, Kayleigh was taken at 29 years old after fighting eating disorders for 16 years. Her mother is now starting her own advocacy journey in the United Kingdom to honor her daughter. The following link shows Kayleigh’s fighting spirit … it also shows pictures which could be triggering.

Kayleigh

In the midst of the incredible dysfunctionality of the eating disorder industry, amongst its pettiness, its self-interest, its greed, its incompetence, its being infected by irrational, militant activists more interested in assuaging their own guilt and pain at the expense of others, we must never forget who is truly fighting the battle.

Fighting … and dying.

 

Most people toiling in the eating disorder industry have never heard of Kelly Burk. Most eating disorder advocates do not know who she was. How she lived. How she loved. How she died. And yet, ten years ago, on August 7, 2009, Kelly breathed her last. And a mother’s, and father’s, and husband’s, and brothers’, and aunts’ and uncles’ hearts were broken. A parent’s greatest fear manifesting itself in a cruel, unrelenting way. Ten years ago.

Similarly, most people toiling in the eating disorder industry have never heard of Michelle Fulkerson. Most eating disorder advocates do not know who she was. How she lived. How she struggled. How she died. And yet, ten days ago, Michelle breathed her last. A sister’s and mother’s hearts were broken. A sister left behind asking her beloved sister to “Give daddy a big hug for me in heaven.”

Ten years ago. Ten days ago. And both inextricably intertwined.

So, who was Kelly Burk? A mid-western girl, the oldest of three siblings, lording over and protecting her two younger brothers. She obtained her college degree and still strived for more. Vivacious and smart. She walked into a room with presence. She loved mightily. She fell in love and married. And yet, she fought her own battles, her demon.

By then, the demon had begun to leave its mark upon Kelly. It devastated her to the point that she could not have children. But, she and her husband spoke of adoption.

And yet, she did not receive treatment in an eating disorder treatment center. This was at a time before the “Gold Rush of Expansion” had taken the eating disorder industry by storm. And yes, her friends and family were concerned … and afraid. But, she was strong. She was formidable.

And then one night, in the still of the night, a quiet, unremarkable night, in her home, her heart could take no more … and it beat its last.

Her death certificate did not mention eating disorders, as they rarely do. But everyone knew. And this poor soul would have been simply one more soul taken before her time, taken before she had a chance to make an everlasting mark on society.

But as it happens on rare occasions, Kelly’s family was lifted up and inspired by her. While she was struggling, her family often said that they must do something … they must do something for Kelly. And from the ashes of despair, the Something for Kelly Foundation was born.

Ten years. Ten long and yet, in some ways, very short years. Ten years since Kelly last embraced her loved ones. But, the foundation named after her is carrying on, more vibrant and alive than ever.

Compared to ten years, ten days is but a blink of the eye.

Indeed, ten days is by almost any stretch of the imagination, a short period of time. 

I was contacted by a fellow dad and advocate on Monday night, August 5. He  told me that a young girl had very recently succumbed to her eating disorders. Now, I did not know who Michelle Fulkerson was. But, I discovered that she had fought this insidious disease as well as severe depression for at least three (3) years. And she breathed her last ten days before. I also learned that her father had predeceased her. This broke that incredibly important bond between a daddy and his daughter. And I can’t help but wonder if he had been here, would that have made a difference?

I don’t have to imagine the depth of the agony, the feelings and emotions her mother must surely be feeling … we belong to the same tragic, unfortunate club that no parent should ever belong to.

I also don’t know if Michelle inspired others or helped others. That is not important. What I do know is that Michelle deserves to be known, to be recognized, to make us remember what we must surely continue to fight for.

For some reason, the tragic news of Michelle hit my heart very hard. I received this news about 12 hours before I was to make remarks on behalf of The Morgan Foundation before nurses and health care coordinators for the schools in the Catholic Diocese of Dallas. I then had the privilege of introducing Dr. Tyler Wooten, Psychiatrist and co-medical director of the Eating Recovery Center of Dallas. Dr. Wooten spoke with, interacted with, and engaged everyone in the room.

The nurses in attendance were concerned about only one thing, that is, how to best help their students. How to identify at an early stage and then work with the parents of these students to give them the greatest chance to recover. How to make sure there were fewer Kellys and Michelles.

There was no talk of whether a counselor was “cisgendered, or in a paranormative relationship, or how you are required to admit whatever “privilege” you may have or you are labeled a bigot, or the evils of healthism or ageism or any other type of “ism.” The community was unified in their firm determination to better learn how to recognize eating disorders at an early stage, how best they can help their students and how best they can save their lives.

Saving lives. The fight for life or death. And yet, Kelly was taken. Michelle was taken. And many thousands of other lives are being taken. And somewhere along the line, we have lost sight that that is what the fight is about … this is a fight for life or death.

Look one last time at the faces of Kelly and Michelle. And don’t forget. Certainly, their families will never forget. Let them be a reminder that they are the souls you are fighting for. Don’t cheapen their legacies, their lives and their deaths, by your own misguided or personal agendas.

“A society concerned with shalom will care for the most marginalized among them.”

            Randy S. Woodley, Author, Activist

“The individual has always had to struggle to keep from being overwhelmed by the tribe.”

            Fredrick Nietzsche, Philosopher

July was National Minority Mental Health Awareness Month. It was first established in 2008 by the National Alliance on Mental Illness (“NAMI”). It largely went unrecognized, unacknowledged and unremarkable.

And it should not be surprising that the eating disorder industry is a microcosm of that reality. The eating disorder industry is at a dysfunctional crossroads as it continues to plummet down a rocky path of chaos, silo mentality, voodoo treatment regiments and parochialism.

Nonetheless, in recognition of the month of July and National Minority Mental Health Awareness, let us shine a beacon of light on the largest group of marginalized members in the eating disorder industry, for they are in the greatest need of understanding, support and assistance. Those marginalized members who are overlooked, misunderstood and trampled upon … and sometimes whose existence is not even acknowledged.

I speak of course … of boys and men.

Prevalence

According to the British eating disorders charity “BEAT,” about twenty-five percent (25%) of people diagnosed with an eating disorder are male. According to Eating Disorders Hope, a US based eating disorders organization, forty percent (40%) of those who suffer from Binge Eating Disorder are male. According to the National Institute of Mental Health, 1.2% of all United States adult citizens suffer from binge eating. If this number is accurate, that translates to approximately 3,024,000 adults who suffer from Binge Eating Disorder. Of these, approximately 1,210,000 are adult men. Of course, this does not take into account the many adolescent boys suffering from this disease.

According to the National Eating Disorder Association (“NEDA”) an often quoted statistic states that approximately 30 million people in the United States suffer or will suffer from eating disorders – 10 million of whom are male.

Ten (10) million souls. Equal to the combined populations of Los Angeles, Chicago and Houston. With this many boys and men suffering from eating disorders, one would naturally think the eating disorder industry has rushed to include boys and men in the treatment of eating disorders especially with the unique cultural and societal stigma encountered by males with eating disorders.

Outside Societal and Cultural Issues Encountered by Boys and Men

Boys and men with eating disorders face unique societal and cultural challenges, beginning with the factually incorrect, but widely held misconception that eating disorders are a “rich, white girl’s illness.” That “real men” do not get eating disorders. And young men are supposed to be able to overcome adversity through shear strength of will and determination. Treatment and counseling are for women folk!

And yet, if men do not enter treatment programs, they do not give researchers the chance to understand their stories, their risks, and their successes. Dr. Ralph Carson, a doctor specializing in eating disorders stated: “ … leaning on published statistics does not always tell the whole story of men with eating disorders. Since eating disorders are not typically associated with being male, and since there are not many published articles about how these disorders impact men, those males who do have eating disorders could be struggling in silence.”

The cultural expectation of beauty for men involves a body that is well-defined and muscular. A V-shape, packed with muscles in the shoulders, well defined arms and a torso tapering to slim, yet muscular legs is society’s definition of beauty for men. And it goes back thousands of years. One   need only to look to Michelangelo’s masterpiece, “David” and you realize that he captured the quintessential expression of what “a man” is supposed to embody.

Men who participate in sports like wrestling, ice skating, swimming, boxing and gymnastics are particularly susceptible to eating disorders to become stronger with more endurance.

Even still, body dysmorphia impacts a large percentage of males. A male with this condition wants to gain muscle mass so he looks stronger and more virile. The modern day version of “David.”

Dr. Carson goes on to state, “For so long, eating disorders have been considered a female condition, so males shy away from it. They aren’t females, so they think it can’t happen to them, or they don’t want to be given a female label or a female disease.”

Even clinicians may overlook signs of eating disorders in men. Dr. Carson relates, “In the past, the clinical reference books didn’t even mention men. Up until recently, the DSM defined anorexia with a lack of menstrual periods. Men were just invisible.”

With these societal and cultural views to fight and with the number of males impacted, one could presume that the treatment of boys and men with eating disorders would be of paramount importance. And yet, if one held those views, they would be wrong.

Lack of Treatment Options

Treatment has been overwhelmingly and almost universally focused on girls and women. In fact, there are numerous treatment centers which do not admit boys or men suffering from eating disorders. Timberline Knolls in Lemont, Illinois; Clearview Women’s Center in Los Angeles; Center for Hope of the Sierras in Nevada; Magnolia Creek Treatment Center in Alabama; Oliver-Pyatt Center in Florida; Princeton Center for Eating Disorders in New Jersey; The Renfrew Center in Pennsylvania; Carolina House (*Correction. Thank you to Leanne Raiford who contacted me and pointed out that Carolina House opened a gender inclusive house in September 2017) in North Carolina, and; Montecatini Treatment Center in California, to name just a few. 

With regard to treatment, Dr. Carson related, “I’m in the field and there’s not that many places to get treatment. I’ve heard that the number of facilities is increasing, but the facilities are not specific. It’s hard to even find a place to refer men with eating disorders. And finding the right place is so important. Men can feel shame in asking for help, and sometimes, they can even feel shame while in treatment. In some facilities there are 35 women and two men, so those men can feel really disconnected.”

And if a male is self-aware enough to understand he has a life-threatening illness and turns to the eating disorder industry for help, he is likely to find bias, treatment designed for girls and women and very few answers.

Bias Encountered by Males from Eating Disorder Professionals

The International Association of Eating Disorder Professionals (“iaedp”) holds itself out as: “Established in 1985, the International Association of Eating Disorders Professionals (iaedp) is today well recognized for its excellence in providing first-quality education and high-level training standards to an international multidisciplinary group of various healthcare treatment providers and helping professions, who treat the full spectrum of eating disorder problems.”

It also states, “Clearly iaedp has become more than just an organization. It is representative of leadership in the field. The value of the overall iaedp program is perhaps best seen in its annual Symposium. [emphasis added] The conference draws attendees from all corners of the globe…”

Let’s review the iaedp Symposiums from 2015 through 2019 to determine the value of iaedp’s programs with regard to boys and men.

At the 2015 Symposium, which lasted 4 ½ days, there were 48 educational sessions conducted. Only one (1) session addressed men. The topic? It was entitled, “Bringing Men to the Table: Reaching and Training Male Loved Ones to Support Treatment and Recovery.”

At the 2016 Symposium, which lasted 4 ½ days, there were 54 educational sessions and poster presentations. And whereas, there was one session on music therapy and one session on art therapy, there were a grand total of ZERO sessions regarding boys and men.

At the 2017 Symposium, which lasted 4 ½ days, there were 55 educational sessions. The former male owner of Castlewood, who had been the subject of four lawsuits for allegedly implanting false memories and other improprieties conducted a session on, “Eating Disorders … Sexuality and Intimacy.”  However, what you would not learn about is the manner in which boys and men are suffering and dying from eating disorders and how best to treat them because once again, there were no sessions concerning boys and men.

At the 2018 Symposium, which lasted 4 ½ days, there were 58 educational sessions. And YES! There was ONE SESSION entitled, “Dominant, Logical, Unemotional: Deconstructing Male Eating Disorders.” This 90 minute session received the same amount of time as “E.D.ucation through Musical Theater.” However, it received one fewer hour than the session: “Giving Voice to the Hidden Emotions: The Use of Sand Play Therapy in the Treatment of Eating Disorders with Adolescents.” Who could have guessed that “sand play therapy” was of greater importance and needed more attention than boys and men suffering from eating disorders.

At the 2019 Symposium, which lasted 4 1/2 days, there were 60 educational sessions. You could learn about Veganism but you could not learn anything about boys and men with eating disorders.

So, in a five (5) year time frame, at iaedp’s largest annual international conference, attended presumably by thousands of professionals, there were a total of 275 educational sessions. 1 session was addressed to training men to be supportive partners. There was 1 session deconstructing male eating disorders. And that is the totality. On the other hand, you could learn about sand play therapy, musical theater, art therapy and veganism!

If, as iaedp says on its own website, it is representative of leadership in the field and the value of iaedp is best seen in its annual Symposium, then boys and men are in grave peril and not just from this insidious disease.

Perhaps NEDA would prove to be more understanding and would embrace boys and men. But, as pointed out in the last article, we addressed the manner in which NEDA turned its back on boys and men long ago. We outlined that a bold, new program, a “Dad’s Initiative” was brought to NEDA nine (9) years ago. In 2012, NEDA was allegedly going to embrace dads and kick off this program. And then … NEDA did nothing.

To add fuel to the fire, in a controversial post that appeared on NEDA’s Facebook page which took place on Tuesday, July 23, 2019, men who were fighting eating disorders were singled out, bullied and abused:

“John Doe: I don’t dispute the veracity of the post at all, what I would say as a man who lives with ED is we are very underrepresented in discourse, advocacy, and services. Not to take anything away from women who suffer, but we need more visibility about this topic among men so men can learn to talk about it safely too. Thanks.

Jane Doe: This post has to do with men, too.

John Doe: Jane Doe I didn’t say it didn’t. NEDA asked how people reacted to it and that is my personal reaction.

Jane Doe: dude, you’re full of shit. Just listen to yourself. You’re literally saying your reaction to this post is that we need to talk more about men. Though this post has to do with men, then you say you didn’t say it didn’t, but you reacted to it as such. You’re trying to fucking derail and take over when this didn’t even mention gender.

John Doe: Who are you to try to and silence me? I’m a man who has lived with this crippling disease for decades,. I wouldn’t wish it on anyone, ever I’m talking about my own experience Ever go to a NEDA event? Almost all women. [remaining message lost]

Jim Doe: John Doe I am in the same boat as you John and I am very disappointed with NEDA. Jane has some serious issues of wanting/needing to divide people. I am very sad and disappointed with NEDA. They made me realize there really is no hope [emphasis added]

Kate Doe: Okay, so I thought this was a safe place. I can see politics is in their agenda. I’m out … I’ll recover with my local EDA.”

After a storm of complaints, NEDA took down the post. But, it reappeared on the personal Facebook page of an officer of NEDA that very same day.

Given the harm and discord NEDA’s post caused, one would naturally assume that NEDA would act like any responsible organization and issue an apology.

The next day, NEDA did issue a statement. But, this statement in no way accepted responsibility for its short-sighted and harmful conduct. Instead, in a brazen act of arrogance and intransigence, NEDA did not even apologize … that is to the persons who were harmed. It did however, reaffirm its commitment to social injustice. The post in material part said, “Removing yesterday’s post was in no way a retraction of NEDA’s commitment to important social justice issues, rather it was a response to the harmful discourse in the comments section.”

In fact, the only apology came from an officer of NEDA and was directed toward a closed Health at Every Size (“HAES”) group on Facebook wherein that officer stated: “Folks, I want to apologize for the labor many of you provided that was erased tonight. [emphasis added] I’m disappointed about it being taken down …” And then, “We won’t be deterred in our social justice work, but there is a long way to go – a lot of learning to do to navigate the vitriol that this team [NEDA] is not familiar with.”

No apology to the men on the NEDA thread who were bullied. No apology to the eating disorder community. A recommitment to the message of the Social Injustice Warriors. Perhaps it is time for NEDA to come out of the closet and speak its perceived truth, “No Men Are Allowed.”

As for foundations, Project HEAL is becoming a force in the community. And yet, even within Project HEAL, messages are being sent that boys and men are not included. Full disclosure requires me to state that I started the Project HEAL North Texas Chapter approximately two (2) years ago [but turned over the chapter to others to operate]. I spoke at a gala event in Dallas in May 2018 hosted by Project HEAL. Its founder, Kristina Saffran is nothing short of amazing, a powerful presence. 

And yet, in late September, Project HEAL is hosting an enrichment camp celebrating self-care, body acceptance and empowerment. Camp HEAL is being held at the Angeles State Forest in Southern California. Its promotional literature lists 37 camp counselors, speakers and leaders. Of these 37 leaders, 36 are women. One (1) man. Thirty-Six (36) women.

Would There Even Be Interest in a Boys or Men Program?

Hard questions need to be asked all around. Assuming iaedp had promoted and presented sessions on boys and men, would there be any interest? Would anyone attend? The answer to these questions can perhaps be supplied by the Academy for Eating Disorders. (“AED”)

At AED’s 2018 international conference held in Chicago, there was an educational session entitled,”Unraveling the Enigma of Male Eating Disorders: Conceptualization, Assessment and Intervention.” It was presented by Stuart Murray and Jason Lavender. I was a bit late coming to the session. When I arrived, I saw the room was packed. Every seat was taken and people were standing against the walls. As people continued to arrive, I first offered my chair to them to sit outside of the room looking in through the doors. As even more people arrived, I walked over to a nearby dining table and chair set and started moving over chairs for them to be seated upon.

This session ran long because of the interest and questions asked. Now, would every breakout session involving boys and men be as well attended? Of course not. But, the professional interest is there when the opportunity is presented. This is also demonstrated by the fact that there were no less than eight (8) poster presentations with different topics focused on issues faced by boys and men.

Even still, more difficult questions have to be asked. How did we get to this place? How can as many as 10 million people suffering from this disease be relegated to worse than second class status? Where are the leaders of eating disorder organizations? Perhaps we should look at them as well.

Organizational and Industry Leadership Exclusion

It should come as no surprise that Men have been, as a matter of course, excluded from leadership positions in the eating disorder organizations.

If you look at NEDA’s primary officers, all four (4) are white women.

The Alliance for Eating Disorders Awareness lists a leadership team of thirteen (13) people, twelve (12) of whom are women and none of whom are African-American.

The National Association of Anorexia Nervosa and Associated Disorders lists five (5) staff members. All of whom are white women.

The International Association of Eating Disorder Professionals (“iaedp”) lists four (4) primary officers. Three (3) of the four (4) are white women.

The Academy for Eating Disorders (“AED”) lists five (5) persons on their Executive Committee, four (4) of whom are white women.

The Eating Disorders Coalition list five (5) officers, four (4) of whom are white women.

The Multi Service Eating Disorders Association (“MEDA”) lists five (5) officers, all of whom are white women.

As such, of the forty-one (41) positions listed, the tally is:

1. Zero (0) African- American men;
2. Zero (0) African-American women;
3. Four (4) White men;
4. Thirty-seven (37) White women.

Diversity at its finest? This lack of representation may also explain, given these statistics, why the industry as a whole is ignoring boys and men. 

They may Be Forgotten but They will NOT be Victims

Where are boys and men afflicted with this deadly disease left to turn? Certain elements in the eating disorder community and the more militant advocates advance baseless messaging, social engineering, finger pointing, and victimization all in the name of bringing social injustice inside counseling rooms. Rallying cries of “white supremacy” and “white male privilege,” are being whispered across the eating disorder advocate community, which when extended to their most commonly defined meaning are pointing fingers of oppression and blame against the very people being excluded by the eating disorder industry, boys and men. It has already been demonstrated that if boys or men are hurt as a result of this militant advocacy, one need not apologize. Perhaps boys and men are merely meant to be the sacrifices laid on the altar of social engineering in the eating disorder industry.

To that militant sect who seek to strike back in furious anger against those whom they believe have belittled and stigmatized them, your wait is over. The eating disorder industry is doing your job for you.

But, boys and men, fathers, husbands, brothers, sons, who are afflicted with this disease will not be forgotten. They will not be victims. They have a voice. A voice that should have been heard long ago … a voice which will be heard in the future.

The National Eating Disorder Association (“NEDA”) is in chaos. It has lost its identity. It has lost its message. It has no vision. And whatever purpose it once had has become misdirected as it is willing to sacrifice those very lives whom they were formerly dedicated to helping … on the altar of politics and social injustice.

The eating disorder industry as a whole is fractured, wandering without any type of unified strength or purpose. Tragically, our children and loved ones continue to pay the ultimate price for this dysfunctionality. And in these drastic times, drastic measures are called for … and past due.

NEDA’S HISTORY AND PURPOSE

NEDA purportedly started on May 4, 1987. According to NEDA’s own records, “In 2001, Eating Disorders Awareness & Prevention and the American Anorexia Bulimia Association merged to form the National Eating Disorders Association. At the time, Eating Disorders Awareness & Prevention and the American Anorexia Bulimia Association were ‘the largest and longest standing eating disorders prevention and advocacy organizations in the world.’” 

According to its website, NEDA “supports individuals and families affected by eating disorders, and serves as a catalyst for prevention, cures and access to quality care.” 

And yet, skepticism began to arise about NEDA’s claims. Researcher Ben Radford wrote in the journal, Skeptical Inquirer, “I found many examples of flawed, misleading, and sometimes completely wrong information and data being copied and widely disseminated among eating disorder organizations and educators without anyone bothering to consult the original research to verify its accuracy”.

Radford further stated, “ … miss-leading [sic.] statistics and data have been ignored by organizations like the National Eating Disorder Association who has not released data for incidence of anorexia from 1984-2017.”

Radford reported that each agency continues to report incorrect numbers assuming that someone else has checked the accuracy.

WHAT DOES NEDA DO?

According to public sources, NEDA “holds various Walks throughout the United States at different times during the year. The Walks are fundraising events that also serve the purpose of ‘uniting communities and raising awareness about eating disorders.’”

As for these “Fun Walks,” the crowds consist almost exclusively of clinicians, treatment providers, patients and their families … the vast majority of whom are white and focused on those suffering from anorexia nervosa.

These Walks are organized by local foundations or interested persons in the communities. And in general, the proceeds realized from the Walks were split evenly between NEDA and the organizer. This certainly is logical since a great deal of local planning and work goes into hosting a walk. But, this too changed. NEDA made the decision to keep 100% of the proceeds from these Walks.

Organizers, foundations and persons on the local level who do the actual work, who drum up support, who call upon their financial resources and support systems would not be rewarded. Local organizations which relied upon their portion of the revenue generated from these Walks suddenly found themselves in a place where they had to cut back on local support, reduce their staff or find new ways to make up for this loss of income.

NEDA also has a “call in helpline.” This helpline is in operation Monday – Thursday from 9:00 a.m. to 9:00 p.m. and Friday from 9:00 a.m. through 5:00 p.m. Undoubtedly, this helpline has assisted in connecting those in pain with treatment providers.

NEDA has monopolized putting its brand on the annual eating disorder awareness week which takes place during the last week in February.

NEDA also awards grants and funding in a de minimus amount every year. For all of its efforts, should it be applauded or should much more be demanded?

NEDA’S FUNDING

Since NEDA is a 501(c)(3) entity, it need not disclose the sources of its funding. However, we do know that in its most recent IRS Form 990 filings, NEDA reported revenue over the course of the past few years between $3.9 million and $4 million annually.

So, from where does its funding come?

The only “Platinum Sponsor” listed by NEDA is RBC Capital Markets. RBC markets itself as, “RBC Capital Markets is a premier global investment bank providing expertise in banking, finance and capital markets to corporations, institutional investors, asset managers and governments around the world.” RBC stands for Royal Bank of Canada. Other treatment centers owned by private equity firms are also listed as sponsors.

Then there is the issue of the location of the headquarters of NEDA. With a 501(c)(3) entity, ordinarily one would seek to minimize as greatly as possible the operating expenses of the company. And yet, in 2011, NEDA chose to relocate its offices from Seattle to one of the most expensive locations to operate a business in the world, midtown Manhattan. Then CEO, Lynn Grefe, president and CEO of NEDA stated, “Thanks to the tremendous generosity of a donor, the move to our stellar, new office space was possible. Establishing a permanent presence in New York City is a strategic move for NEDA, not only unifying our staff in the same time zone, but placing us in the heart of the media capitol.”

However, some of the most expensive business space in the United States is certainly not necessary especially since social media is available and effective anywhere else in the United States.

And the question must still be asked, what does NEDA really do? Perhaps we should ask instead, what does NEDA not do?

WHAT NEDA DOES NOT DO

We know that NEDA does not do any research into the biological, genetic or metabolic causes of eating disorders. It does not conduct research of any substantive means.

We also know that NEDA does not directly administer treatment to any people suffering from eating disorders.

NEDA does not operate treatment centers, research centers, or lobbying centers. It appears as if it exists for the sole purpose of perpetuating its own existence.

OTHER ISSUES

Certainly, NEDA has other issues with which it must contend. Issues that are beginning to strangle whatever mission and purpose it may have once had.

No Support for Others in the Industry

As the entire eating disorder industry is aware, on Monday, July 15, 2019, Dr. Cindy Bulik and other research scientists and doctors from across the globe announced the results of their study on anorexia nervosa. This study brought to light the genetics and metabolic aspects of the disease. The study could result in treatment breakthroughs and a greater understanding of the disease. Internationally, news groups, print media and television newscasts featured the study.

The parent group F.E.A.S.T. featured the study and even conducted a video presentation with four of the primary doctors overseeing the research study. Social media was ablaze with the study. Dr. Bulik appeared in podcasts and radio programs.

As for NEDA, the group which is ostensibly supposed to represent the entirety of the eating disorder industry and community? Nothing. Nada. No press release. No social media activity whatsoever. And the question must be asked: Why that is? How could they miss one of the biggest, most significant announcements in the industry? 

Inflammatory social agendas published

The following Tuesday, July 23, 2019 NEDA found itself enveloped in a firestorm over a controversial post on its Facebook page. (A future article will deal with the disturbing issues discussed in that post and as such, this issue will only be briefly highlighted herein.) The controversial post started with the following picture:

Predictably, the comments following the picture quickly turned ugly, profane and polarizing. Sadly, the comments were not all from eating disorder patients and people suffering from this disease. Some clinicians wallowed in the mud. Accusations of being a bigot, a white supremacist, of fear mongering permeated the post. A gentleman who admitted he was struggling with his eating disorder was told he was “full of shit.” Because of the increasing vitriol, eventually NEDA pulled the post.  But, the damage had been done.

The following day, NEDA issued the following statement:

“To the NEDA Community,

Last night we removed a post from our social media channels that addressed the societal factors that influence our perception of eating disorders. Removing yesterday’s post was in no way a retraction of NEDA’s commitment to important social justice issues, rather it was a response to the harmful discourse in the comments section.

The priority of NEDA social media channels is to provide a place for support, information, education and advocacy for all members of the eating disorders community, and we’re thankful for the emotional labor of those who contributed and responded to the post. We are grateful and supportive of those who advocate for communities traditionally left behind in the dominant narratives around eating disorders, in particular, the artist Alyse Ruriani Design, and author of the quote Melissa Fabello, PhD.

To help ensure productive conversations on our channels, we will delete comments that: 
• Are in any way threatening
• Engage in name-calling 
• Include personal attacks
• Create a harmful environment

We aspire to create spaces that affirm everyone in the eating disorders community, no matter their size, race, gender, sexual orientation, age, socioeconomic status or ethnicity and provide resources that support all individuals and families affected by eating disorders.

With gratitude,
NEDA”

Now, what seems to be missing from that statement? There is no hint of an apology to those persons suffering from this disease who were hurt, victimized and on the receiving end of bullying statements in that thread. No apology was extended to those persons in that post who stated they were leaving NEDA, that they would no longer support NEDA and would seek their support from local groups. One must ask whether these souls are merely the first ones to be sacrificed on the altar of political correctness and social injustice? 

This non-apology statement, presented in the most myopic, intolerant and militant manner, is a “hell-bent for leather” reaffirmation of the social injustice path upon which NEDA has chosen to stake its reputation and future without accepting any responsibility for its own misbegotten conduct.

And as for affirming everyone in the eating disorder community, that may be true … unless you are a dad of a child suffering from this disease.

Dads need not apply

Approximately nine (9) years ago, a fellow attorney, a father approached NEDA about a bold, new program, a “Dad’s Initiative.” This man’s daughter had been struggling with eating disorders for years. Her treatment was, as per the usual standard, expensive. And yet, he persevered. He wrote a book on the relationship between a dad and his daughter. He had passion, intelligence, drive and vision.

He assembled a board of advisors which included some of the most recognized and respected names in the industry. The Dad’s Initiative involved a nationwide campaign designed to educate, empower and encourage dads to take a more active role in their daughters’ lives and, in the case of those suffering or in recovery from an eating disorder, to become more active participants in their daughter’s treatment and recovery.

This Initiative had definable goals and a step-by-step process to implement and accomplish all of the goals. The benefits of the Dad’s Initiative were presented to NEDA. And at first, NEDA paid lip service to adopting and implementing this Initiative. NEDA asked this man to join a steering committee that purportedly was charged with, amongst other tasks, analyzing the Initiative and moving it forward. The Initiative was published in Renfrew’s then monthly magazine. Goals included having over 100 dads attend the next NEDA Conference. (What ever happened to those?). The future looked bright. In 2012, NEDA was going to embrace dads and kick off this program. And then …

Radio silence. Requests to implement the Initiative were met with … silence. NEDA placed it on the back burner and then … buried it. And to this day, dads are not represented, there is no direction in the industry to include dads, and dads for the most part are not even discussed by NEDA. They are the forgotten victims. And our children continue to suffer as a result.

The Future?

Clearly, NEDA has no mission. Its vision has been lost. NEDA has betrayed the trust placed with them. And families, our children, our loved ones suffer as a result.

Organizations become known by their leaders. They are the face and the voice of the organization. And when their voices are unknown or become muted in the face of adversity, there is a price which must be paid.

The buck must and does stop at the top. Leaders of organizations, businesses, foundations or corporations justifiably deserve accolades when their vision, passion and leadership result in benefits not just for their charges but society as a whole. So too, must those leaders bear the consequences for their failures, short sightedness and poor decisions.

NEDA is rudderless, adrift with no firm purpose or reason to exist. Its vision, if any, is limited by its own blinders … and blunders. If chaos exists, an organization becomes particularly susceptible to misguided voices and harmful influences. When its social media presence results in harm to those whom they are charged with protecting and they knowingly and intentionally do not mitigate the damage nor even apologize for the harm they caused, then that falls squarely on the head of the CEO of that organization.

The mistakes, missteps and harmful conduct perpetrated by NEDA lie with its CEO … And if NEDA does not take proactive steps to replace an incompetent CEO, what does that tell us about this organization?

“I like doing radio because it’s so intimate. The moment people hear your voice, you’re inside their heads, not only that, you’re in there laying eggs.”

            Douglas Coupland, Author and Artist

“Television gives an image, but radio gives birth to a million images in a million brains.”

            Peggy Noonan, Author

“There is a feeling, when you listen to radio, that it’s one person, and they’re talking to you, and you really feel their presence as one person.”

            Ira Glass, Public Radio Personality

Eating disorders. Autism Spectrum Disorders. Post Traumatic Stress Disorders. Alcohol or Substance Abuse Disorder. Depression. Schizophrenia. Opioid Use Disorder. And so many others. Most, if not all, with aspects of societal stigma and shame associated with them.

Mental health issues … those dirty little family secrets kept locked away in a dark closet. You and your loved ones suffering in silence. Feelings of isolation. Feelings of being alone. Feelings of despair.

No longer.

Beginning September 3, 2019, The Morgan Foundation, along with The Something for Kelly Foundation are teaming up to produce a weekly radio segment entitled, “The Mental Health Moment.”

Each week we will bring to you national and international experts practicing in the various fields of mental illness. And we will be asking difficult questions, hard questions. We will explore various aspects of these illnesses. Some programs may be difficult to listen to, as we will pull no punches.

Of course, eating disorders will always be our core passion and the focus of our on-going work. But humanity is inextricably linked together. Our flaws and illnesses are common and shared. Mental disorders are stigmatized many times over compared to “medical” conditions. And so we will address all mental disorders.

We hope you join us. We hope your vision and our mission are one and the same. We hope that together, we can help bring light to the darkness which exists within us; we can help alleviate some stigma and shame, and; together, we can help save one more life, one more precious life at a time.

Inspiration and uplifting of the soul can come in the most unexpected places and at the most unforeseen times. Certainly in the past, there have been times when grief was manifesting itself in stronger ways and I could feel the icy grip of despair beginning to squeeze what little joy in life remained to me. During these times more often than not, I received some sign that a greater message, a greater power was at play … an email from a parent thanking me for help, a person previously unknown contacting me and stating that Morgan’s story inspired them to keep trying.

These times occurred during my greatest moments of doubt and despair.

Then, last Friday afternoon happened.

The day had not been particularly emotionally taxing. Whole Foods beckoned and a promise of fresh seafood on the grill was calling. Wild caught sockeye salmon was on sale under a Prime Membership for $9.99 a pound. Golden beets, properly seasoned would be a great compliment. A more robust pinot noir would accent the complex flavors. And so, I proceeded to the 15 items or fewer line. After a brief wait behind other shoppers, the middle of three cashiers lifted her arm, looked at me and said “next.”

I did not know at the time, and could not know, that life and the unknown undercurrents of soulfulness that give such incredible richness to life awaited.

The young cashier, probably in her mid 20s, began to scan the merchandise. She then looked up at me and quietly asked, “Are you Steven Dunn, Morgan’s dad?” I imagine my face went blank for just a second, and I stuttered out a “Uh, yes I am. How … ?” She said, “I was in treatment with Morgan.” When I asked where that took place, she said it was Children’s Hospital. (Morgan’s first treatment facility). I remarked that that had happened quite some time ago and asked how she was getting by. She said that she was really improved and feeling better than she ever had. She relayed that she was getting occasional outpatient treatment at ERC Dallas and we briefly talked about Dr. Stephanie Setliff, Tyler Wooten and the Dallas treatment team with whom she was engaged.

She stated that Morgan had really inspired her. I told her that Morgan continues to inspire me every day, that I try to write and honor her message and that if she ever needed anything, to contact me. Tears began to come to her … to us both.

And that is when she captured my heart. She looked down for a second, and then looking up through tear filled eyes, she quietly said, “I was at Morgan’s funeral. I remember it. It was there that I truly understood how serious this was, and I dedicated my life to getting better … Mr. Dunn, I think Morgan saved my life.”

I reached out and held both of her hands, tears coming down my cheeks and reminded her that I would be there for her. As I slowly left the store and sat in the car, looking up at the hot Texas sky, whether I knew it or not, salvation of the soul had again been delivered to me.

And for a brief moment, I rejoiced knowing that there was one more life saved. One more monument, a testament to those whose bodies may no longer be with us, but whose strength of will, courage and spirit continue to inspire and lift us each day.

In 54 BC, Cicero, the great Roman orator, politician and philosopher began to write his treatise, “On the Republic.” This masterpiece is a dialogue on Roman politics and constitutional theories, examining the state of politics in Rome during a very turbulent time in Rome’s history … during the rise of Julius Caesar. It imitated Plato’s work, “Republic,” and is presented as a Socratic dialogue amongst some of the greatest of past Roman philosophers and political leaders.

The treatise was politically controversial at the time. However, by framing the issues as a philosophical debate without outright naming his adversaries, and by using various hypothetical speakers, he could express his concerns and fears without likelihood of harsh retribution.

And so, to borrow liberally from the concept of  On the Republic, and with the understanding that dissenting views are healthy, let us proceed anon. 

The Presence of Industry Changing Funds

Let us presume the existence of Scipio Ross Clinton III. Mr. Clinton is a multi-billionaire whose heirs predeceased him. He has a strong sense of philanthropy and civic responsibility. And yet, Mr. Clinton is in the final stages of a fatal disease and is looking for the worthiest cause to donate and establish grant funding in the amount of $3 billion dollars.

An amount that surely has the potential to save thousands of lives, to provide research funding which could establish any university as the international epicenter of research leading to treatment breakthroughs. Research based treatment being made available to all citizens. Enough money to force legislative cooperation and insurance reform. A bold, new future awaits any medical or mental health based industry which is awarded a gift of this size. A bold, more hopeful future awaits those suffering from the disease.

And so, a series of interviews is set up to request those funds and to demonstrate that the money will be used ethically and wisely.

And the suitors line up.

The American Cancer Society is the first cause to step to the plate. Proudly stating that it has been in existence since 1913. That it has provided funding to 47 different Nobel Laureate researchers, that it discovered the link between smoking and cancer and that in 2012 alone, it raised $943 million. It boasts of recent breakthroughs in CAR T-Cell therapies, next generation sequencing and immunotherapy. Its lobbying arm is the American Cancer Society Cancer Action Network, a non-profit, nonpartisan subsidiary. It is a powerful force to be reckoned with.

The American Heart Association puts forth its credentials. Discovering the link between dietary fat and cholesterol. Pacemakers. Artificial heart valves. In 1964, funding the research of biochemist, Mildred Cohn whose work is credited with developing the first MRI. New drugs to treat infant heart disease. Overall funded research surpassing $3.9 billion. It has implemented a Strategically Focused Research Network which brings together top researchers from different institutions to collaborate on specific topics. It recognizes that research is the engine driving breakthroughs of this disease. For the most part, it conducts its own lobbying, pushing for bills which emphasize research.

At this point, Scipio Ross Clinton III notes that these presentations concern primarily medical diseases. That mental health diseases are much more difficult to frame because of their very nature. Mr. Clinton III, being a fair man asks that various mental health disease representatives be brought forth.

The first representative addresses Autism Spectrum Disorder. It is explained that Autism first appeared in historical literature in 1911. How Autism evolved from referring to excessive hallucinations and fantasy in infants in the 1950s to being referred to as a complete lack of unconscious symbolic life in the 1970s. In the 1980s, Autism criteria was dramatically altered and there was growing understanding among researchers that Autism was not a single condition but a spectrum of conditions that could be present throughout life. The DSM-IV, first released in 1994, classified Autism under a spectrum. This version listed 5 conditions with distinct features. The unifying and collaborative nature of research and outlook on Autism resulted in the US Congress passing The Combating Autism Act in 2006. This Act was designed to stimulate research into the biological causes of Autism and allocated hundreds of millions of dollars in pursuit of this cause. And the understanding and treatment of Autism has evolved.

Schizophrenia representatives made their case. They establish that Schizophrenia is a debilitating psychiatric disorder affecting approximately one out of every 100 people worldwide. It is characterized by hallucinations, paranoia, and a breakdown of thought processes, and often emerges in the teens and early 20s. They state that the lifetime impact on individuals and society is high, both in terms of years of healthy life lost to disability and in terms of financial cost, with some studies estimating the price of treating schizophrenia at more than $60 billion annually in the United States alone.

They note that medications currently on the market treat only one of the symptoms of the disorder (psychosis), and do not address the debilitating cognitive symptoms. In part, treatment options are limited because the biological mechanisms underlying the illness have not been understood. But, as part of a multinational, collaborative effort, researchers from the Broad Institute of Harvard and MIT, Harvard-affiliated Massachusetss General Hospital and other institutions from all over the world have helped identify more than 100 locations in the human genome associated with the risk of developing schizophrenia in what is the largest genomic study published on any psychiatric disorder to date.

Finally, the representatives from the eating disorder industry are then granted an audience. For the purposes of the interaction, the eating disorder representative is Ms. Harvie LeLapine.

Eating Disorder Interview and Claims

Clinton: Ms. LeLapine, I have had very productive meetings with people representing many worthy and compelling causes. What sets apart eating disorders?

LeLapine: Well, first thank you for seeing me today. By the end of our talk, I am confident that we would have won over your trust. I believe that the eating disorder industry will be the best stewart for your trust, and your legacy will be safe with us. Now, I could go on about all of the appalling statistics but there are two facts which demonstrate the serious nature of this disease. First, eating disorders have the highest mortality rate amongst all mental illnesses. And two, once every 62 minutes someone dies as a direct result of this disease.

Clinton: Those are horrific statistics. But, I was under the impression that opioid addiction had a higher mortality rate.

LeLapine: Well, technically yes. But, opioid addiction is classified more as an “addiction,” than mental illness.

Clinton: Hmm… ok. Now after speaking with representatives addressing cancer, heart disease, autism and schizophrenia, I believe that scientific and academic research are the keys to breakthroughs in treatment protocols and the understanding of those diseases. It’s like research is the engine which powers the vehicle, that being treatment. Is that the case in the eating disorder industry?

LeLapine: Why, yes! Of course!

Clinton: And you would agree with me that this type of research is the item that Congress is most interested in when they are considering related bills and funding measures, wouldn’t you agree?

LeLapine: Yes, of course. Study after study shows that to be the case.

Clinton: Great! So, tell me what eating disorder research initiatives and bills are currently being pursued in Congress?

LeLapine: The eating disorder industry is represented by the Eating Disorder Coalition for Research, Policy and Action. They employ a lobbyist and have that under control.

Clinton: [Pause]. I understand that. So, what bills emphasizing eating disorder research are currently being pursued by this group?

LeLapine: Well … they are currently looking into supporting bills which will provide greater access to mental health care for our Military Veterans. Everyone loves our Veterans! And, expanding Medicare for greater access to treatment. And making sure that residential treatment is included under the Mental Health Parity Act!

Clinton: [Pause] I see. All worthy causes I am sure. But, I was asking specifically about research. Every other organization emphasized the importance of research and how that is the key to breakthroughs in treating their respective diseases. You cannot possibly establish effective treatment protocols without a thorough understanding of what you are trying to treat. Now, you are asking me to invest my considerable fortune in the eating disorder industry. I want to know how that investment is going to save the lives of thousands of people in the future knowing that research is the key.

LeLapine: Well, Mr. Clinton, in 2009, 2011 and 2013, the FREED Act, the Federal Response to Eliminate Eating Disorders Act was introduced. These bills were heavily invested in and emphasized research. We recognized and embraced the reality that research is the key, And yet each time, those bills failed to get out of committee. We believe that was done largely because of the political in fighting.

Clinton: And since 2013?

LeLapine: Well … in 2015, we introduced the “Anna Westin Act.” And some language of that was adopted in the 21^st Century Cures Act!

Clinton: Well, good for the industry. Were there any research specific aspects of that bill and if so, was that incorporated in the 21^st Century Cures Act? If there is, that will make fundraising and applying my fortune so much more effective and streamlined. At least part of those funds can be utilized for the research set forth in that Act.

LeLapine: Well you see, sir. Uh, that would be, no.

Clinton: [Long pause] … I see. So, what research is being conducted?

LeLapine: Doctor Cindy Bulik at the University of North Carolina is doing incredible work on genetics and microbiomes! Dr. Walter Kaye at UC San Diego has been in the industry for decades. Dr. Evelyn Attia at Columbia, Dr. Stephen Wonderlich at the University of North Dakota are all doing great work. There are numerous other doctors and scientists as well.

Clinton: Good. So, are these doctors collaborating, sharing research and working with the goal of applying their research to real life situations with the ultimate goal of improving treatment and finding new avenues to help more people?

LeLapine: I am sure they are! In fact, I believe the Academy for Eating Disorders, the world’s largest international eating disorder organization is instrumental in providing an incubator type environment where collaboration is possible.

Clinton: Hmmm. Perhaps we should move on to other topics. Tell me about the treatment guidelines and criteria in place to treat eating disorders.

LeLapine: I am glad you asked me that. To show how diverse and evolving the industry is, between 2012 and 2018, seven different organizations published seven different treatment guidelines and criteria!

Clinton: Wait, let me get this straight now. There is not one generally recognized and respected treatment protocol which has been adopted as authoritative and which constitutes the generally accepted standard of care?

LeLapine: Well, not exactly.

Clinton: But, isn’t that one of the many reasons why you emphasize research?  Doesn’t research form the basis for a universal treatment protocol that clinicians can then use to treat patients?

LeLapine: Well, yes, but each case is unique and different and the standard protocol guidelines may not be applicable for each patient.

Clinton: I get that. But, if there are guidelines and a uniform treatment protocol, wouldn’t that enable clinicians to consult with their university and academic based doctors and professors if needed, to then tailor a treatment plan for that individual?

LeLapine: Technically, yes, I suppose.

Clinton: And then, wouldn’t that also provide a stronger, more uniform basis to rely upon in fighting insurance companies when they deny care or wish to “step down” a patient prematurely?

LeLapine: Yes, I suppose it would.

Clinton: So what type of treatment is being provided to these seriously ill people?

LeLapine: Treatment centers focus on the best, evidence-based practices! Cognitive Behavioral Practices, DBT, Family Based Therapy, especially for adolescents with anorexia, are all strongly encouraged.

Clinton: So who oversees these treatment programs to ensure that evidence based practices are being used? And how many hours per week are these therapies being utilized?

LeLapine: Each state should be monitoring the treatment centers. As for the number of hours, that is left to the discretion of each treatment center.

Clinton: So, there are no uniform licensing criteria or quality of standards implemented to insure that the treatment centers are complying with the best available practices?

LeLapine: It is complicated.

Clinton: So is my $3 billion Ms. LeLapine.

LeLapine: I apologize Mr. Clinton. I meant to say our hands are tied to a certain extent by protective language that was not included in the Mental Health Parity Act and because Congress will not regulate the insurance industry mandating that their internal guidelines comply with the generally accepted standards of care.

Clinton: I understand that. Congress traditionally has not gotten involved in the overregulation of insurance companies and instead have left that largely to individual states. But tell me Ms. LeLapine, suppose Congress decided to stop acting like petulant children throwing mud pies back and forth in the sandbox and required insurance companies to implement and enforce generally accepted standards of care in their benefit analysis. Which of the seven different guidelines which have come out in the last seven years would be enforced?

LeLapine: I see your point. Certainly, part of the $3 billion would be attributed to that. And I can only speculate that the organizations responsible for those guidelines would coordinate their efforts to come up with generally accepted standards.

Clinton: Why isn’t that being done now? Don’t these doctors who own 100% of these treatment centers care about having generally accepted standards of care in place guiding treatment decisions?

LeLapine: Well, Mr. Clinton, yes I imagine doctors would prefer that. But, the truth is, the vast majority of the major residential treatment centers are now owned in whole or in part by private equity firms.

Clinton: [Long pause … icy stare] So, treatment decisions are being made by non-medical personnel?

LeLapine: NO, NO! The treatment decisions are being made by the doctors and clinicians. It’s just …

Clinton: It’s just … that length of stays, and “stepping down,” at these places are being decided not necessarily by a person’s medical condition, but by insurance companies who do not have to comply with any generally accepted standards of care and private equity companies whose decisions are financially based alone?

LeLapine: I suppose.

Clinton: Are the statistics improving at all?

LeLapine: No. That is why it is so urgent for you to invest your monies in this industry!

Clinton: Ms. LeLapine, can you give me any reason at all why my wealth, my legacy should be entrusted to an industry that, well to call it “dysfunctional” would be charitable?

LeLapine: Yes, Mr. Clinton! First, we do not regard our industry as dysfunctional but instead, as quite progressive. Some of our treatment centers are beginning to incorporate the very important issues of social injustice and awareness of white privilege and thin privilege and weight stigma and weight discrimination and oppressive systems and marginalized communities into their programming!

Clinton: I see. Now, there is no dispute that social injustice, weight stigma and weight discrimination are all woven into the fabric of American society. And that is a tragic truth. But aren’t the best forums to address those societal wrongs the streets in order to protest and in city halls and in the state capitals and on the Hill in Washington D.C. instead of individual therapy sessions?

LeLapine: Well, yes in part. But, weight discrimination has had a huge negative impact on people who have been considered obese! Even the term “obese” is regarded as antiquated and discriminatory.

Clinton: Well, I see. But, wouldn’t you agree with me that “obesity” is not a mental disorder and not all obese people have eating disorders? And if so, how do you insure that the message and treatment of this deadly disease is not diluted by a thirst for social justice?

LeLapine: Well, we believe that those social injustice issues touch all aspects of the eating disorder industry, from the way our patients see themselves to the manner in which our treatment professionals are trained and administer therapy.

Clinton: And what independent, university or academic research studies, using control groups and measured variables provide the foundation for that belief?

LeLapine: Well … we believe that studies in the past have been biased and do not accurately reflect the diversity of population and body sizes.

Clinton: And what supporting data to you base this belief upon? To me, it sounds like studies supporting your view do not exist so in order to bolster your own credentials, you attack the credentials of those prior studies. If that is the case, what other studies, research or statistics do you claim are biased or inaccurate? Or, are you proceeding on anecdotal evidence and unsubstantiated opinions of advocates?

LeLapine: This belief is based upon the systemic discrimination and stigma which has been imposed against people in larger bodies their entire lives. Numerous studies indicate they make less money, have fewer employment opportunities and fewer choices in life that other people take for granted.

Clinton: There is no dispute about that. But, are we talking about a deadly mental illness or making societal changes?

LeLapine: You can do both since larger bodies persons with eating disorders have that societal pressure that other people do not have.

Clinton: Very well. Thank you for your time and passion Ms. LeLapine. We intend to make our announcement in the next month and will keep you informed.

LeLapine: Thank you Mr. Clinton. I do hope that in choosing the eating disorder industry not only will you be advancing the cause of this largely misunderstood disease, but you will be saving thousands of lives while, perhaps, taking a stand against societal inequities. If we are talking about a legacy, isn’t that a legacy that anyone could be proud of?

A legacy indeed. What will be the legacy we leave to the next generation? Will we significantly advance the understanding and treatment of this disease? We will continue to have far more questions with far few answers?

Will our loved ones remain lost and potentially forgotten as many others join them in that Army of Warrior Angels?