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?

Past articles have exposed the financial dangers of private equity ownership of treatment centers. Peer review doctors and shady practices have been illuminated. Unfair and fraudulent practices perpetrated by insurance benefit providers have been exposed. Sexual predators in the field have been identified.

The disconnect between research doctors and clinicians has been explored. The “pay for play” evolution of the EDCoalition and its resulting loss of integrity and moral advocacy has been highlighted

Dysfunctionality aplenty. Dysfunctionality for all. And yet, there is more. And mores’ the pity.

And so we will address our therapists. To begin with, this article is not an indictment of all counselors or even a majority of them. Many therapists give life saving treatment and save lives. To those life savers, thank you.

Our counselors and therapists,  those “soldiers in the trenches,”  hopefully utilizing the best “evidence-based” therapies in the industry, have direct, hands on interaction with our loved ones, those who are afflicted with this deadly disease. They are the ones we entrust with our most precious love. We often come to them in our greatest hour of need, when our despair and fear are at their highest. They have a sacred duty. And they do not have the luxury of treating our loved ones like guinea pigs or science experiments for their own spurious, off the wall theories.

Counselors need to research and stay abreast of the latest break throughs, if any, regarding treatment regiments. They must be able to discern which therapies are supported by authentic, objective, and scientific or evidence based research. And which therapies are little more than snake oil pipe dreams perpetuated by quacks and charlatans.

Of critical importance is that the therapist must not and cannot treat therapy as if it is their own counseling session. Their personal biases, experiences, afflictions and past struggles they may have had with eating disorders, yes in part defines who they are. But those same attributes CANNOT be allowed to form the fundamental basis of the counseling sessions. For if they do, the patients, the persons suffering from this insidious disease will suffer the greatest. Counselors … therapists … It is not about you or whatever social agenda you wish to pursue. And if you make it about you or your “social engineering project,” you fail those whose lives have been entrusted to you.

“Rich Little White Girl’s Disease.”

That term, or words to that effect have been used far too frequently. The perception that eating disorders only impact skinny, teen-aged white girls. That perception, in part, has resulted in this disease not being taken seriously be mainstream society.

“White privilege.” There also appears to be a movement among some counselors and advocates that their own self-perceived bias or “privilege,” must be addressed before they can more adequately render therapy. Counselors parading self-aggrandizing terms like, “I must first discover my own [more often than not, white] privilege so I can be a better counselor” are misguided, self-serving and just flat out wrong.

I am still searching for that first authoritative, independent research study indicating that therapists must first discover their own “white privilege” to properly treat this disease. Similar research regarding the specific manner in which the concept of “white privilege” impacts the biological aspects of the brain as they pertain to eating disorders seems to be missing.

Does white privilege impact the manner in which micro biomes in the gastro-intestinal tract process the complex messages it receives and sends the brain? Does white privilege impact the manner in which on-going genetic research is beginning to discover the way in which this insidious disease could be passed through generations? Does white privilege impact the manner in which certain “high risk” genes in the brain regulate oxytocin levels?

Recently invented terminology like “micro-aggression, macro-aggression, Trauma with a ‘Big T,’ trauma with a ‘little t,’ and ‘eating disorders are disorders of systemic oppression’,” are being bandied about by some as if they had just discovered the cure for cancer. Unfounded speculation that social injustice, “white privilege,” and latent racism in society [all of which undeniably exist and need to be fully addressed in other venues] are the direct cause or grossly exacerbate the severity of eating disorders is not supported by any ethical, independent research studies.

Counselors and therapists, you do not have the right to impose your own personal views of society’s ills upon your patients. And yet, studies are showing that this is precisely what is happening. We are speaking of Countertransference.

An article written by Trish O’Donnell, of EDCare, states:

“Transference is the unconscious tendency of our clients to shift their emotional interest toward new persons or objects in the hopes of re-experiencing old persons or objects, often with the subconscious hope of succeeding where formerly they feel they have failed. For example, a 23-year-old bulimic female arrives for therapy under the influence of marijuana. She is vaguely aware that she wishes the therapist to be irritated with her, angry enough to set limits on her behavior and control her. This is soon revealed to be a repetition of her adolescent behavior, which was designed to get a response from a remote and distracted mother. Rather than the client’s remembering, she presents the memory by transference. Transference may be adaptive to the extent that it reflects the urge to master the past and provides repeated opportunity to do so.

In the strictest sense, countertransference is the therapist’s counterpart to the transference of the client. It is not simply the multitude of varied reactions we have to stories and behaviors presented by our clients. It is the unconscious tendency of the therapist to shift his or her emotional interest from persons and experiences of the past onto the client. [emphasis added] It may be damaging to the therapeutic process when there is resistance to conscious awareness, and therefore an acting-out on the part of the therapist. For example, a therapist who has unresolved adolescent rebellion issues may have difficulty in setting limits for the multi-impulsive eating disordered client.”

Research doctors conducted an extensive study of Countertransference. Their findings were published in the International Eating Disorder Journal in 2015[1]. In this study, six patterns of reactions were identified: Angry/Frustrated, Warm/Competent, Aggressive/Sexual, Failing/Incompetent, Bored/Angry at Parents and Overinvested/Worried feelings. The factors showed meaningful relationships across clinician demographics, patient characteristics, and treatment techniques.

This study then concluded that overall, clinician’s reactions were most frequently associated with the clinician’s gender, patients’ level of functioning and improvement during treatment, and patient personality style.

Counseling sessions are not your opportunity to address your views on society’s ills. You are not there to rectify the many wrongs of society. You are there for one reason and one reason alone, that is, with all of your abilities, to help the struggling, perhaps even dying soul sitting in front of you.

So, do you want to be a better counselor? A more evolved therapist? Review the latest research regarding the latest biological aspects of this disease. Exhaustively research the brain, the gastro-intestinal system and the manner in which these aspects of the human body are inextricably intertwined. Research the genetic components of this disease. Read scientific journals on eating disorders. Absorb case studies. Make appointments to speak with local scientists and research doctors. I guarantee they would embrace the opportunity to speak with you. Get up to speed on the latest evidence based treatment regiments. Stay current on the latest thoughts on Family Based Therapy and Cognitive Behavioral Therapy. Yes, review the charlatan based therapies. Not to implement them but to dissect them and reason why they are not appropriate. Arm yourself.

Your calling is not merely a business. It is not merely a job. This is your career. This is your life’s calling. This needs to be your passion. Lives depend on you. Parents, living with terror, depend on you. You must be bigger, stronger, smarter, more insightful than you could ever possibly imagine.

And if you refuse … if you cannot, we parents will not abide. Our loved ones lives depend on you. Our most precious commodity is entrusted to you. This sacred duty is not for the faint nor the weak of heart. And we parents, the families suffering from this disease will not abide “crackpot ideas being thrown against the wall to see what sticks” when our loved one’s lives hang in the balance.

It is your sacred duty. It is our life and the lives of our children.

[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4485383/

“Vexilla Regis Prodeunt Inferni.”

            Dante Alighieri, The Divine Comedy, Canto XXXIV

“How are the mighty fallen, and the weapons of war perished.”

            2 Samuel 1:27 (King James Version)

The FREED Act of 2009

In 2009, the EDCoalition supported and helped introduce the Federal Response to Eliminate Eating Disorders Act (2009 FREED Act). Representative Patrick Kennedy of Rhode Island introduced this bill. It counted 51 co-sponsors comprised of Congress persons from both major parties.

The 2009 FREED Act was a mighty bill. An ambitious bill. It addressed priorities.

After the preamble, the 2009 FREED Act first addressed and required the National Institutes of Health (“NIH”) to:

1. Compile statistics on the economic cost of eating disorders;
2. Identify total expenditures by the NIH and related agencies on eating disorders;
3. Consult with eating disorder researchers to implement a comprehensive long term plan for research on eating disorders;
4. Annually submit to Congress a scientifically justified budget on eating disorders research;
5. Establish a task force to assist researchers in applying for grants, create a list of priorities for eating disorders research;
6. Establish “Centers of Excellence” among non-profit private and public institutions in which research, and training researchers was to be conducted;
7. The purpose of the research was to improve understanding of the etiology, early identification, prevention, best treatment, medical and psychological sequelae of and recovery from eating disorders;
8. Oversee collaboration and coordination of information among centers of excellence;
9. Establish a central repository in which the research could be reviewed and shared;
10. Collaborate with other agencies within the NIH to share information;
11. Establish a Center of Eating Disorder Epidemiology to collect and analyze information on mortality and causes of eating disorders, economic analysis of the costs of treating eating disorders and evaluate the impact of eating disorders on quality of life;
12. Establish a clearinghouse at the Center for Disease Control and Prevention.

A copy of the Bill is attached here:

2009 FREED Act

But, this bill was submitted just 6 weeks after the Mental Health Parity Act of 2008 had been signed into law. The 2009 FREED Act never made it out of the various committees.

In 2008 – 2009, private equity firms were unknown in the eating disorder industry. The Residential Eating Disorder Consortium (“REDC”) was not in existence. The EDCoalition counted amongst its officers respected research doctors. And the universal understanding was that research into this insidious disease was the key to making breakthroughs in treatment and recovery.

The FREED Act of 2011

In 2011, the EDCoalition supported and helped introduce the Federal Response to Eliminate Eating Disorders Act (2011 FREED Act). Senator Tom Harkin of Iowa introduced this bill. It counted 9 co-sponsors comprised of senators from the Democratic Party.

After the preamble, the 2011 FREED Act first addressed and required the National Institutes of Health (“NIH”) to:

1. Award grants to public or private entities to pay all or part of the cost of planning, establishing, improving, and providing basic operating support for such entities to establish consortia in eating disorder research;
2. Have the Director of NIH— provide for the coordination of information among consortia and ensure regular communication between members of the various consortia;
3. Require each consortium receiving a grant to conduct basic, clinical, epidemiological, population-based, or translational research regarding eating disorders, which may include research related to—

(A) the identification and classification of eating disorders and disordered eating;

(B) the causes, diagnosis, and early detection of eating disorders;

(C) the treatment of eating disorders, including the development and evaluation of new treatments and best practices;

(D) the conditions or diseases related to, or arising from, an eating disorder; and

(E) the evaluation of existing prevention programs and the development of reliable prevention and screening programs.

4. The HHS Secretary to identify other federal agencies to which collaboration and dissemination of research information;
5. Establish an Interagency Eating Disorders Coordinating Council within the Department of Health and Human Services which would be responsible for annually updating a summary of advances in eating disorder research concerning causes of, prevention of, early screening for, treatment and access to services related to, and supports for individuals affected by, eating disorders; monitor Federal activities with respect to eating disorders; develop and annually update a strategic plan for the conduct of, and support for, eating disorder research, including proposed budgetary recommendations;
6. The HHS Secretary, acting through the Director of the Centers for Disease Control and Prevention, award grants or cooperative agreements to eligible entities for the purpose of improving the collection, analysis and reporting of State epidemiological data on eating disorders;
7. The National Center for Health Statistics of the Centers for Disease Control and Prevention and the National Center for Education Statistics of the Department of Education shall conduct a joint study, or enter into a contract to have a study conducted, on the impact eating disorders have on educational advancement and achievement beginning in elementary schools.

A copy of the Bill is attached here:

2011 FREED Act

This bill was introduced approximately one year after the Affordable Care Act had been signed into law and was being challenged in various courts. The 2011 FREED Act never made it out of committee.

In 2011, private equity firms were beginning to become involved in the eating disorder industry. But, their growth was slow. The  REDC did not come into existence until December 2011. Industry professionals understood that research into this insidious disease was the key to breakthroughs in treatment and recovery. Collaboration was embraced.

Review the provisions of the 2009 and 2011 FREED Acts. Now, imagine how much further along we would be down the path of enlightenment and understanding of this disease had we continued down this path.

The FREED Act of 2013

In 2013, the EDCoalition supported and helped introduce the Federal Response to Eliminate Eating Disorders Act (2013 FREED Act). Representative Theodore Deutch of Florida introduced this bill. It counted 39 co-sponsors comprised of Congress persons from the Democratic Party. The 2013 FREED Act never made it out of committee.

After the preamble, the 2013 FREED Act first addressed and required the National Institutes of Health (“NIH”) to:

1. Compile statistics on the economic cost of eating disorders;
2. Identify total expenditures by the NIH and related agencies on eating disorders;
3. Consult with eating disorder researchers to implement a comprehensive long term plan for research on eating disorders;
4. Annually submit to Congress a scientifically justified budget on eating disorders research;
5. Establish a task force to assist researchers in applying for grants, create a list of priorities for eating disorders research;
6. Establish “Centers of Excellence” among non-profit private and public institutions in which research, and training researchers was to be conducted;
7. The purpose of the research was to improve understanding of the etiology, early identification, prevention, best treatment, medical and psychological sequelae of and recovery from eating disorders;
8. Oversee collaboration and coordination of information among centers of excellence;
9. Establish a central repository in which the research could be reviewed and shared;
10. Collaborate with other agencies within the NIH to share information;
11. Establish a Center of Eating Disorder Epidemiology to collect and analyze information on mortality and causes of eating disorders, economic analysis of the costs of treating eating disorders and evaluate the impact of eating disorders on quality of life;
12. Establish a clearinghouse at the Center for Disease Control and Prevention.

A copy of the Bill is attached here:

2013 FREED Act

This bill was submitted approximately 9 months after the US Supreme Court, in a narrow 5 – 4 decision upheld provisions of the Affordable Care Act. The 2013 FREED Act never made it out of the various committees.

By 2013, private equity firms were permeating the eating disorder industry. The Mental Health Care “Gold Rush” was on. The REDC consisting of those PE owned treatment centers was stretching its influence into the EDCoalition.

Further, after 8 years of toil and collaboration among industry professionals, the greatest hope for standardized guidelines, the  “Working Draft of the Clinical Recommendations for Residential and Inpatient Eating Disorder Programs,” one of the most comprehensive works on treating eating disorders spearheaded by the Academy for Eating Disorders was abandoned by the REDC and its members without explanation.

The EDCoalition under the growing financial influence of the REDC, was shifting its priorities from focusing on research about the biological and genetic origins of the disease and their impact on patients and their families, to treatment alone. Treatment not supported by scientific research. Treatment supported only by anecdotal evidence and confirmation bias. Treatment that would result in the greatest financial return to the private equity firms which had invested billions of dollars into residential treatment centers.

And 2013 marked the death of research related bills. 2013 marked the death of collaboration. 2013 marked the death of the possibilities of “Centers of Excellence.” 2013 marked the death of priorities.

2015 Legislation

The 2015 Legislation submitted by the EDCoalition was designated, “The Anna Westin Act bill.” It was designated H.R. 2515 and was introduced in the House of Representatives on May 21, 2015. This Legislation never made it out of committee. And yet curiously, the EDCoalition still advertises this bill as its “flagship legislation.”

As introduced, its goals did not include one mention of research, or Centers of Excellence, or collaboration with other federal agencies. However, one provision it did include was to have clarifying language that if a group health plan or health insurance issuer included coverage for eating disorder benefits, then residential treatment for eating disorders should also be covered in accordance with the Mental Health Parity Act of 2008. And that is curious.

Residential treatment was already covered under the Mental Health Parity Act of 2008. So, why was this provision even necessary? And who would financially benefit the most by having this provision included? And why was research and funding for research completely omitted from 2015 and forward? And why is this provision included in the one page dedicated to eating disorders of the 355 pages of the 21^st Century Care Act?

Attached is the 2015 bill:

2015 Act

What Changed?

So, in the ten years between 2009 when the first FREED Act was submitted to today, what changed?

In 2009, the industry understood and embraced the reality that research and collaboration constituted our greatest hope. Collaboration amongst professionals pursued devising and disseminating treatment standards and criteria for residential care. Emphasis was directed toward a greater understanding of this disease so that effective treatment could be rendered.

This was also reflected in 2011 before the REDC was born. This thinking carried forward for the last time in 2013 before private equity had the eating disorder industry in its cold, icy grip.

At one time, the eating disorder industry was led by intellectual giants. And that is reflected in the 2009 FREED Act. The REDC was not in existence. Private equity firms were not involved in the eating disorder industry. The EDCoalition was not a bought and paid for shill for those private equity firms.

The impact? Studies and analysis now exist indicating that eating disorders are worsening and are much more prevalent than previously thought. Attempting to treat this disease without a thorough understanding of the biological and genetic causes is like playing a game of three dimensional chess without knowing the rules.

And all the while, the leaders of the REDC and EDCoalition proceed secure in the knowledge that their little fiefdoms are protected by the money players. The eating disorder industry has been bought. And the price we pay is measured in the lives taken by this disease every hour of every day.

Vexilla Regis Prodeunt Inferni … “Forth go the Banners of the King of Hell.”

“No man’s life, liberty or property is safe while the legislature is in session.”

            Mark Twain

Mental Health Care in Texas

The non-profit group, Mental Health Group of America annually ranks all 50 states and the District of Columbia with regard to the prevalence of mental illness and access to care. It uses 15 different measures to compile a composite score. It then also breaks down categories according to adult rankings, youth rankings, prevalence of mental illness and access to care. Except for the prevalence category, the higher your score (on a scale of 1 – 51) the rate of access to care worsens.

So, let’s take a look at how the Great State of Texas faired:

1. Overall Ranking – 43
2. Adult Ranking – 25
3. Youth Ranking – 46
4. Prevalence of Mental Illness – 4
5. Access to Care Ranking – 50

With the exception of the prevalence of mental illness in the State of Texas, the other rankings are appalling. But even that does not tell the complete story.

The Kaiser Family Foundation is a non-profit foundation focusing on health policy research, polling and analysis. In 2018, with regard to spending per capita on mental health care to its residents, Texas ranks second to last among ranked U.S. states and territories.

Surpassed only by California, Texas also has the most Mental Health Care Professional Shortage Areas. This issue is exacerbated when you consider that two-thirds of licensed clinical psychologists practice in the five most populous counties in the state, leaving the remaining 249 counties with inadequate care. Many counties are without a single licensed clinical psychologist.

With the lack of mental health care continuing to be in the spotlight, one could naturally assume that our politicians would be able to put their differences aside and work together to implement a system that provides greater access to mental health care for its citizens. [At this point, I will refrain from using the tired, contrived saying about “ass/u/me.”]

And so let us examine the Texas Legislature and mental health care bills and issues.

The Texas Legislature

The Texas Legislature meets every other year during odd numbered years. The session begins on the second Tuesday in January and in accordance with the Texas Constitution, is limited to 140 days.

Texas has 31 state senators and 150 representatives in the House.

Getting a bill introduced and passed and then placed on the governor’s desk for signature was intentionally made difficult. Bills passed by both the Senate and House require similar language, must pass through committees in each body and are subject to parliamentary procedures which could effectively kill a bill at the last moment. Texans historically have been in favor of limited government and self-reliance. The state’s political system reflects that reality.

In the most recent legislative session, which concluded on May 27, 2019, 10,877 bills and joint resolutions were introduced. Approximately 1400 bills were passed and await signature or veto by the governor. The numbers alone indicate that if you are proposing a bill in the State of Texas, expect about a 90% rejection rate.

With the dreadful mental health care statistics being a reality, let us review how the legislature did on mental health care issues. 

Mental Health Care Bills

Senate Bill 10

The primary mental health bill considered by the Legislature was Senate Bill 10 establishing the Mental Health Care Consortium. This bill would create an executive board to ensure that state agencies coordinate and cooperate to improve mental heath care services in Texas especially to children.

SB 10 was designed to create comprehensive child psychiatry centers (“hubs”) at state medical schools and other health-related institutes of higher education. These hubs would provide mental health consultation services from on-call mental health professionals, via telemedicine, to pediatricians and family physicians.

The hubs would also use remote services to conduct behavioral health assessments for at-risk students. It would authorize these students to have two consultations via telehealth services with social workers or other mental health care professionals, and then determine if a referral for additional treatment is called for.

$99 million for funding of the program was allocated from the general budget of the State. With all 31 Senators co-sponsoring this bill, it sailed through the Senate and approval in the House looked to be assured.

Granted, there were a few, fringe groups which opposed SB 10. The reasons usually included: it increased the size of state government; it established bureaucracy without accountability to taxpayers; the bill allowed meetings and activities without parental involvement; there was a mandate to use “evidence based tools” [when all such tools were not defined] and as such, that made them dangerously vague.

But alas, every village needs its idiot. And so steppeth to the plate, Representative Jonathan Stickland. On the last night that the House could advance a bill first proposed in the Senate (like SB 10), Rep. Stickland raised a “point of order” objection to the bill claiming that an analysis of the bill provide to lawmakers contained an inaccuracy.

Never mind the fact that SB 10 was received by the House on March 6, 2019. Never mind the fact that it was read on the floor of the House for the first time on March 28, 2019. Rep. Stickland had to attempt to indulge in gamesmanship which would have cost millions of Texans access to much needed mental health care. Further, it appeared as if his ploy was going to be successful. Unfortunately and after due consideration, the parliamentarian of the House was forced to agree that an inaccuracy did exist and the bill was returned to the House committee where it would die at the stroke of midnight that night. In a telephone interview that day, Rep. Stickland attempted to justify his conduct by stating: “I think it was a well-intentioned bill that had some very bad unintended consequences. I think it could have been stronger on parental rights to make sure our constitutional rights are protected in the bill.”

The Village Idiot had from March 6, 2019 to raise these concerns. But, he chose not to do so until the 11^th hour.

But, the game was afoot. A few hours later, the major provisions of SB 10 were attached as a rider amending SB 11. SB 11 was a sweeping school safety bill that had been passed by the House earlier in the evening.

Over Rep. Stickland’s new objections and request not to reconsider SB 11 with SB 10 attached, the House passed the new SB 11 and the major provisions of the Texas Mental Health Care Consortium were born.

The implementation of the Texas Mental Health Care Consortium could be slow and cumbersome. But, it has started. Undoubtedly, Rep. Stickland will be a future beneficiary of some of the provisions of this Bill.

SB 1145

SB 1145 was an eating disorder bill written and supported by the Elisa Project, an eating disorder foundation in Dallas, Texas. Its executive director is Kimberly Martinez, whom I count as a friend.

SB 1145 required the Department of State Health Services to collaborate with the Health and Human Services Commission and prepare a report on the prevalence of eating disorders and eating disorder-related deaths in Texas.  The report was to include:

             (1)  statewide and regional statistics regarding the prevalence of eating disorders and eating disorder-related deaths in Texas;

             (2)  an overview of national trends in eating disorders; and

             (3)  an overview of state-funded behavioral health treatment options available to persons with eating disorders.

The requisite financial analysis indicated that additional state funds would not have to be allocated for this bill.

It was filed in the Senate on February 26, 2019. It jumped through the required hoops in the Senate, was passed and referred for consideration to the House on May 10, 2019. In the House, it was reported favorably without amendment and assigned to another committee to be scheduled for House debate. And there, it died.

The only issues with SB 1145 were that it was not filed expeditiously enough to warrant consideration in both chambers and it could have been supported by additional background material to both senators and representatives.

With some work in the next two years, I am confident that this bill will pass and this much needed study will be undertaken.

SB 1511

This bill also pertains to eating disorders. And yet, please let this legislation die. This bill is biennially proposed by the venerable Representative Garnet Coleman of Houston. It is a poorly written bill, does not reflect the latest research and thinking in the eating disorder industry and is vigorously opposed by the powerful insurance lobby in Texas.

I wrote an analysis of this bill two years ago when it was proposed and attach it here:

Prior Bill Analysis

It may surprise some that I am not in favor of this bill. However, I tend to support only those bills which have a realistic chance of passing, reflect the current scientific research on this disease and can be supported by the academicians and treatment professionals alike.

Conclusions

Amongst the over 10,000 bills submitted, there were a few other bills which were tangentially involved with mental health. Like most bills in Texas, they never made it to the governor’s desk for final approval or veto.

The access to care for mental health in the State of Texas unquestionably is lacking. Some of that is due to mental health care not having previously been a priority. Some of that is due to the lack of wisdom or insight of certain politicians. Some is due to the fact that Texas is a very large state and both medical and mental health care in the vast rural areas of the state are lacking.

But, with the passage of bills like Senate Bill 10 and with the passage in two years of the bill proposed by the Elisa Project, there is a glimmer of hope for the future. The road continues to be long and arduous. But, because of the work and passion of many advocates and professionals, the voices of those who suffer from mental health issues now have a chance to be heard.

“[Fast Track to Health Study] has become a touchpoint for overinflated concerns.”

“I’m perplexed as to why we’ve been singled out…”

“It’s not as if we’re recommending all young people should have this.”

Professor Louise Baur, Leading pediatrician, Fast Track to Health Study

“The HREC recognises that there is a risk for a young person to develop an eating disorder with exposure to restrictive diets, and in particular very restrictive diets.”

“ the risk of children developing an eating disorder is justified because of the potential for the participants to lose weight.”

Ms. Asra Gholami, Executive Officer of Research Ethics, Sydney Children’s Hospitals Network

In April of 2019, after worldwide criticism and condemnation of the Fast Track to Health Study in Australia, the Study’s lead researcher, Louise Baer made the inexplicable decision to throw gasoline on an already hotly burning fire. In a brief interview given to the publication, “ausdoc.com,” Ms. Baer expressed being perplexed as to why this study was being singled out. Some of her remarks are set forth above.

In response, in the United States there are a few colloquial phrases which immediately come to mind: “low hanging fruit; piece of cake; easy as falling off a log; shooting fish in a barrel; teeing it up.”

Ms. Baur, Socrates is credited with saying, “The only true wisdom is in knowing you know nothing.” More recently, in the HBO’s hit series, “Game of Thrones,” the mantra, “You know nothing Jon Snow,” was repeatedly uttered. So, let us help escort you down the path of enlightenment and give you some possible answers as to the reasons why you, your feckless colleague Ms. Gholami and your hair-brained study are being “singled out.”

First, for some reason Ms. Gholami, your Executive Officer over Research Ethics opined that the risk of children developing an eating disorder, a deadly, misunderstood, widely misdiagnosed disease, was justified because of the potential of weight loss. Really? And yet, we will come back to that issue.

The following are just some of the reasons why “you are being singled out for criticism:”

1. You acknowledged the risks and limitations of the study in correspondence with health professionals, but you were not going to pass on this information to the parents when signing their child up for the study (That is called failure to disclose a known risk);
2. Twenty-nine (29) health experts from Australia and the United States initially expressed concern that your study was not safe nor effective for children; 
3. Subsequently, additional medical experts and counselors issued a report condemning your study. Their report included the statement: “The “Fast Track” trial induces participants to behave in a way that mimics Anorexia Nervosa (AN) (severe restriction of calories), placing them in considerable risk of going on to develop AN, Bulimia Nervosa (hyperphagia with or without purging), or Binge Eating Disorder (hyperphagia);”
4. The Australia & New Zealand Academy for Eating Disorders issued a statement stating that it did not support your study;
5. A world wide petition condemning your study was signed by over 21,000 people;
6. The international eating disorder parent support group, F.E.A.S.T. condemned your study on a number of grounds;
7. Two (2) ethical complaints have been filed against your study;
8. The advocacy group, Eating Disorders Families Australia released a statement condemning the study and requesting that it be stopped;
9. HAES(“Health at Every Size”) Australia endorsed the ethics complaints, condemned the study and issued its statement of condemnation;
10. The Academy for Eating Disorders, the world’s largest eating disorder organization issued a statement not supporting the study and requesting that it be stopped; 
11. Your study cannot and will not ever be duplicated anywhere else in the world because of the inherent risks to the children and the fact that this study is not being conducted under laboratory conditions, utilizing control groups under the daily supervision of medical and treatment professionals; 
12. Your “mitigation strategies” initially did not even include a clinical psychologist to review “the young people.”

To further help place things in perspective, this site identifies issues with the study, the concerns of professionals and other persons and details the risks.

What You Need to know

A criminal lack of disclosure, lack of adequate supervision over the children in the study, lack of supervision over the testing process, world-wide condemnation, lack of the ability to duplicate the study’s processes, failure to identify all medical personnel who approved this study, concealing the identities of the so-called experts who knowingly participated in the initial decision not to inform the parents of all known risks and finally, exposing children to a known and dangerous disease.

And if these are not good enough reasons supporting condemnation, then let us address another reason.

“The risk of children developing an eating disorder is justified.”

Your Executive Officer over Research Ethics obviously requires enlightenment as to the deadly nature of eating disorders. And so, let us commence.

Eating disorders do not kill quickly nor mercifully. Only after years of having your bodily organs compromised and wracked with damage does the spectre of death finally appear at your bedside. Only after years of isolation from friends and family, years of taking you off of your life’s journey, years of physical, mental and emotional pain do eating disorders finally and almost reluctantly give way to the harbinger of death.

The disease has taken away the luster of your hair, your body emaciated to the point where you resemble a World War II concentration camp survivor, the shining light reflected in your eyes being taken away and replaced with a dull lens. And one by one, your body’s precious organs begin to shut down.

You lay back in your hospital bed, in physical agony, as the hospital staff wonders if you are “playing up your pain” because of your perceived dependence on pain medication. Your stomach, screaming in agony. Your compromised heart trying to beat its life giving blood to your permanently damaged organs. The synapses in your brain impinged and faulty. Your parents can only sit by helplessly, praying for a miracle and fearing that at long last, the end has come for their beloved child.

The parent then hears the two words that chill them to their very core, “Code Blue!” goes screaming over the public address system in the hospital as doctors and nurses run to your beloved child’s room. Your child is dead. The medical personnel frantically perform resuscitation on your child. Each passing second that your beloved child is “medically dead” seems like a lifetime. And if you are lucky, those medical professionals bring back to life, your beloved child.

You are then wheeled to the Intensive Care Unit. And even as the icy-cold fingers of overwhelming fear grips your throat, as a parent, a small spark of hope lingers in your heart. Until, two additional times, you are forced to endure hell on earth as two more “Code Blues” scream out over the hospital P.A. system. Bells screeching in alarm. Each time, for your beloved child. The lead doctor over the ICU wing then comes to you and says each time it is more difficult, after your child is brought back, each time her bodily responses become more faint, that her brain activity is stopping. Each time, more damage is being done to her body. That the end is near. With your child’s life signs all but extinguished, you make the most difficult decision of your life.

And you sit in a lonely room in agony, holding your beloved child’s hand, kissing her brow. Waiting. Praying. This time when your beloved child’s heart stops, there are no bells. There are no screeching alarms, no doctors nor nurses running frantically into the room. The doctor monitoring her heart beat and brain activity finally, mournfully looks at you and very quietly says the two words that complete a parent’s descent into total darkness … “She’s gone.” And life as you have known it, will never be the same.

If and when your study results in even one child contracting an eating disorder, that is the possible hell to which you will be sentencing them. So tell me, Ms. Baer and Ms. Gholami, under any circumstance, is that justified?

Better yet Ms. Baur and Ms. Gholami, you and those cowardly medical professionals who approved this study can tell me in person in June 2020 in Sydney, Australia at the International Conference held by the Academy for Eating Disorders. All you need do is find the booth in the Exhibit Hall hosted by the Morgan Foundation. Look for a logo that stands out like no other. You will be able to read some of the journals she wrote. You can see the photos of her life. You can tell me how the risk of eating disorders is justified for the potential of losing weight.

And if you dare, you can look me in the eyes and try to convince me that Morgan was simply one more broken egg needed to make your weight loss omelette.

“I am a soul. I know well that what I shall render up to the grave is not myself. That which is myself will go elsewhere. Earth, thou art not my abyss!”

Victor Hugo

“The most beautiful thing we can experience is the mysterious. It is the source of all true art and science.”

Albert Einstein

Over the course of the past two plus years after I have given a presentation, or assisted in getting a person back into treatment, or in general, just remaining open to a greater journey no person is meant to understand, a number of people have approached me and said words to the effect of, “Morgan is smiling right now,” or “Morgan is looking down upon you and is happy.”

After reflection, my response now is perhaps not what you may think. Now, my response is, “I hope not.” More often than not, this response surprises or confuses most people. Don’t I believe Morgan is at peace now? Is her soul “happy?”

I believe the universe, as part of Creation, is an incredible, too vast to comprehend adventure which is meant to be explored. I hope Morgan is exploring. I hope her soul is free from pain, from the chains of our existence. Her soul … Her soul.

This raises the very question, what is the nature of the soul? Is it an incorporeal, indefinable essence of some greater power within us? A light that can never be extinguished. Has it always been in existence and in this instance, just manifests itself in our frail bodies?

Certainly there are some who believe no such essence exists. That upon drawing our last breath, our bodies degenerate into corruption and the earth becomes our final abyss. Others believe in the concept espoused by some organized religions wherein there is a grand and glorious heaven and eternal damnation awaiting in hell. Choirs of angels. Armies of demons.

But more often than not, the fundamental question, “what is the soul” is not addressed.

For that matter, what is spirituality? Is it a belief in some power, being or essence greater than us?  Is spirituality a “thing,” an “object,” some substance beyond our comprehension giving a greater meaning or purpose to our existence?  Maybe it is something that cannot be analyzed or dissected in a logical manner.  Perhaps it is something as simple as the dimensions of existence which have no boundaries.   However one wishes to define, believe or not believe in spirituality or the existence of our soul, our history is replete with inexplicable, unexplainable powerful events which defy rhyme or reason and yet which fill us with … hope, with faith. And sometimes with fear.

“Spirituality” for the most part, is not included as an important consideration in programs offered by most eating disorder centers, hospitals and professionals. There are exceptions. Timberline Knolls has begun to advertise “The Grace Program.” It states, “This program was created to treat women and girls struggling with co-occurring disorders, eating disorders, trauma, mood disorders and substance use disorders in order to reconnect them with their Faith.” The Selah House in Indiana advertises itself as a “Christ centered eating disorder treatment center. The Renfrew Center offers a non-denominational optional, Christian based programming. Canopy Cove in Florida advertises that it offers Christian based programming. Undoubtedly, a few other programs offer “faith based” services as part of their programming.

And yet, there are no “evidence-based” studies indicating the effectiveness of spirituality in eating disorder treatment programs. Nor can there ever be. After all, spirituality is not based upon logic or logic based assumptions. Spirituality and the soul are not based upon hard and fast scientific research. Spirituality, by its very essence, is not based upon demonstrable facts. It is based upon Faith. 

You cannot see Faith. You cannot test Faith in a laboratory. Facts do not define Faith. Faith stands upon its own. And sometimes, when all else Fails, Faith comes to us in our greatest hour of need and it strengthens us.

I could go on about Faith, the soul, and spirituality. Instead, absorb it from the brain, the heart … the soul of a person who struggled mightily from eating disorders and yet during her greatest struggles, she found … Faith. And perhaps her Soul Found her.