Congratulations to the following new officers of the Eating Disorder Coalition:

President   — Chase Bannister, Bannister Consultancy

Vice President – Molly McShane, Monte Nido

Treasurer – Jillian Lampert, The Emily Program

Secretary – Millie Plotkin, The Eating Recovery Center

The immediate past-president is S. Bryn Austin, Academy for Eating Disorders.

For those of us who have suffered, paid the ultimate price, or who still suffer from eating disorders, let us hope that the new leadership recognizes the tremendous opportunities which lie before it … and the incredible challenges they face.

A federal district court judge in Texas ruled that The Affordable Care Act is unconstitutional. Congress is in disarray as both major parties look to perpetuate their own power over the needs of the country as a whole. Despite the Mental Health Parity Act being enacted 11 years ago, insurance providers routinely treat mental health claims differently. Investigations are being conducted by several state boards of psychology against both individual counselors and treatment centers.

Private equity firms have purchased most of the residential treatment programs. This has led to speculation by families, individuals and employees of those treatment centers that quality of care has deteriorated as financial demands escalate to meet the required debt structure. This concern has escalated with the realization that private equity firms are dictating the course of lobbying efforts in our nation’s capitol. In fact, of the four officers listed above, three are employees of the private equity firms Levine, Leichtman Capital Partners (Monte Nido); TT Capital Partners (The Emily Program) and CCMP Capital Advisors (ERC).

In the past two years, there have been several instances in which counselors in residential treatment programs sexually exploited patients in those programs.

The terms “chaos,” “Wild West,” “out-of-control” have all been used by numerous people to define the current state of the eating disorder industry.

And yet, from this chaos, from these many obstacles come incredible opportunities. Opportunities that are squarely before the new incoming president. Opportunities to collaborate. Opportunities to allow the voices of families to be heard anew. Opportunities to be much more inclusive. Opportunities to show, not through his words, but through his actions, that he will not be subservient to the demands of the wealthy, but will instead embrace the greater possibilities of a better tomorrow. Opportunities to espouse a vision shared by so many families, a vision of hope, a vision of renewed strength, a vision of faith, a vision of healing.

The eating disorder industry has reached a crossroads. Some believe it has not only reached, but also surpassed a tipping point. And many people believe that business as usual is not good enough.

But still, opportunities abound for the new president. Opportunities to show independent strength. Opportunities to be the voice for those whose voices have been ripped from life. Opportunities to be a leader for those who suffer from this disease.

Opportunities to demonstrate that it is about the Power of the Message and not the Image of the Messenger.

Mr. President, embrace those opportunities.

In November 2018, the Residential Eating Disorder Consortium (“REDC”) launched its Standards of Excellence Project (“STEP”). The REDC preliminarily explained STEP as, “ … a collection of works demonstrating REDC’s continued commitment to raising industry standards and professionalizing the field. STEP represents the strongest, clearest declaration yet of the patient-centered values, beliefs, and principles that guide REDC’s members in their work every day.”

First, I strongly believe the REDC members want to help people suffering from eating disorders. I believe that REDC members are professionals, learned in their fields and feel much of the same frustrations that the families afflicted by this disease feel. Within the confines of their current financial reality, where expansion and treatment protocol may be driven by private equity interests, they desire to embrace patient-centered values, beliefs and principles.

Further, it is no secret that I have been a frequent critic of some 0f the policies of the REDC. And yet, when they recognize that problems exist and attempt to address and rectify those problems, they should rightly be commended for attempting to update its standards and solve these problems.

Before addressing the new Code of Ethics, it is also worth noting that previously, a number of discrepancies and curiosities were brought to light regarding the REDC’s officers and Board of Directors. Although the REDC limits itself to those entities which provide residential treatment care as part of their offered services, there were a few officers and directors who were not employed by these entities. Whether this constituted an actual “issue” is subject to speculation. Regardless, the officers and directors of the REDC are now all employed by residential treatment providers. Perhaps a small issue but it was addressed. The REDC should be commended for that action.

Finally, questions should be raised as to whether the STEP program is meant merely as a series of internal guidelines designed to give their members a general blueprint to follow. Or is the STEP program designed to be an enforceable set of fundamental, exigent rules objectively applied and enforced for the greater good and relied upon by families and those who suffer from this disease.

If the former is the intent, at this point one can stop reading. A privately held company or organization can implement whatever guidelines it wishes within the scope and bounds of the law. It only has to face ramifications for implementing these non-enforceable guidelines without concrete consequences.

However, the remainder of this article and future ones addressing the STEP program are based on the premise that the REDC in good faith, intended to implement these rules as binding statements of governance upon which families and patients could rely.

Code of Ethics

In the preamble to the REDC Code of Ethics, the REDC states:

In 2018, REDC codified the principles in its Center of Excellence document into a Code of Ethics specifically for REDC member organizations. REDC’s members understand that just as they seek objective validation of other fields’ claims of high standards, their external stakeholders — members of the public, insurance companies, academics, regulators, and others — are more likely to trust them when they demonstrate a willingness to establish clear boundaries and practices. REDC’s Code of Ethics demonstrates that its members are governed by specific ethical principles.

Indeed, a valid statement of the minimum standards which should be demanded from those whom we entrust to help save the life of our loved ones. And yet, one statement stands out not so much for what it includes, but for what it does not specifically include. That language is as follows: “ … members of the public, insurance companies, academics, regulators, and others — are more likely to trust them when they demonstrate a willingness to establish clear boundaries and practices.” So, who is not specifically mentioned in this sentence … only the most important persons. The families. The parents. The patients. Those whom are entrusted to their care. Those people who are living in fear. Granted, the REDC undoubtedly intended that those incredibly important people were to be included in the abstract as part of the “public,” or “others.” But we are the people who make their existence an unfortunate necessity. We should be at the forefront of their consciousness. Now, was this a mere oversight? Perhaps. But it is a grievous oversight. Families should be placed first and at the forefront of those people who should be taken into consideration and protected and who should be able to rely upon clear boundaries and practices.

The Sections of the Code of Ethics

The Consortium’s Code of Ethics is broken down into nine different definitional sections and an Appendix. These sections are entitled as follows:

• REDC members accurately represent their treatment outcomes.
• REDC members accurately represent their range of services and the qualifications of their staff.
• REDC members offer patients clinical services that are grounded in a three-pronged approach: scientific evidence published in peer-reviewed journals; clinical expertise considered practice-based evidence; and patient values, preferences, and characteristics.
• REDC members only admit patients whose needs are appropriate for the type of treatment provided — and for the level of care provided — at their programs.
• In marketing their services, REDC members employ messaging that is truthful, fair, non-deceptive, capable of being substantiated, and in all respects lawful.
• REDC members do not pay or receive anything of value in exchange for patient business.
• Prior to admitting a patient, REDC members clearly communicate the cost of treatment that may be required in both the short term and the long term.
• REDC members disclose financial relationships and any potential conflicts of interest that might affect patient care.
• When participating in media interviews, REDC members are focused on educating the public and raising awareness about eating disorders.

A brief overview of each section follows to give a more complete picture.

(1).

REDC members accurately represent their treatment outcomes.

In this section, the following language is included: “REDC members accurately represent expected outcomes so that patients understand what they are “buying.” They do not exaggerate services or promise unrealistic outcomes. … Members must accurately represent measures, including providing details about sample sizes and response rates such that stakeholders can understand the degree to which reported outcomes represent a patient population.”

This section is crucially important for families. More often than not, parents are researching these facilities online. As they watch their loved one deteriorate physically, mentally, emotionally, fear and desperation grip them. There are precious few objective resources a family can rely upon in evaluating treatment facilities. There is no federal or state oversight as to what information is or should be included.

This has resulted in outlandish claims. For example, one REDC member currently represents on its website:  “99% of parents of child/adolescent patients report that treatment at Center X was helpful, and 97% would recommend Center X to other families in need of treatment.” There is no detail about sample size. There is no detail about response rate. I have yet to encounter any professional who believes those numbers. And yet, desperate families cling to the faintest hope.

Again, if the STEP program is designed merely to be general internal guidelines with no enforcement policies in place, so be it. Advice families of this limitation. If the STEP program represents a strong, enforceable vision for the future, what are its officers prepared to do to bring all members within compliance?

(2).

REDC members accurately represent their range of services and the qualifications of their staff.

In this section, the following language is included: “REDC members understand the limitations of their service offerings and never claim to treat certain conditions, including any co-occurring conditions, for which they are not qualified. All providers should have the appropriate education, training, and experience, and should limit their practice accordingly. Providers may practice up to the full scope of practice as defined by their license(s).”

This section is direct and to the point.

(3).

 REDC members offer patients clinical services that are grounded in a three-pronged approach: scientific evidence published in peer-reviewed journals; clinical expertise considered practice-based evidence; and patient values, preferences, and characteristics.

This section includes the following material language: “Treatment is grounded in the available research, while also focused on spurring innovations (e.g., from clinical practice, academic literature, and so forth). In addition, in keeping with The Joint Commission and CARF International standards, patient values, preferences, and characteristics are also taken into account, along with families’ perspectives. Taking patient preferences into account should not be construed as allowing patient preferences to override the clinical expertise/medical judgment of treatment providers.”

This subsection includes the most complex issues within the Code of Ethics. Every treatment center utilizes the phrase, “evidence-based treatment” within its treatment regiment. This is usually a reference to Cognitive Behavioral Therapy or Family Based Therapy being utilized at those centers. But, families are left to wonder the percentage of time during the week in which actual “evidence-based treatment” is being utilized and whether it is being utilized in the manner resembling the protocol in place during the testing/evaluation/analysis stages. Patient preferences are very difficult to measure, as one must have the necessary expertise to determine the times when the patient is talking. And when it is the disease talking through the patient.

Treatment and recovery are the very heart of the industry. Further, the use of the term “evidence-based” has become incredibly subjective and can be defined in so many different ways. And whereas the use of, “scientific evidence published in peer-reviewed journals” is one of the legs in the three-prong approach, even this is amorphous.

Clinical expertise, as demonstrated by a research study conducted by BYU and Emory University, is often colored by confirmation bias which can result in overestimation of the effectiveness of treatment protocols.

But, what are the options? Collaboration with university and academic researchers as mentioned by the REDC in this subsection is a good starting point. Being open to university based programs and working with organizations like the Academy for Eating Disorders are other progressive actions which can be undertaken.

(4).

 REDC members only admit patients whose needs are appropriate for the type of treatment provided — and for the level of care provided — at their programs.

This section states: “REDC members strictly adhere to guidelines from the American Psychiatric Association (APA) regarding the appropriate levels of care, and they are committed to treating at the most appropriate level of care required to meet a patient’s needs. If the program is not able to appropriately meet the clinical and medical needs of the patient, it guides the patient to more clinically and/or medically appropriate alternative treatment resources.”

This subsection in essence states that REDC members have accepted the DSM-V guidelines set forth by the APA and will strictly adhere to same. If this section is enforced as written and as obviously clearly intended, the families which come to you for assistance should feel a sense of relief. Objective guidelines and treatment parameters reduce the likelihood of confirmation bias and give a greatest awareness and transparency.

(5).

 In marketing their services, REDC members employ messaging that is truthful, fair, non-deceptive, capable of being substantiated, and in all respects lawful.

This section states in material part: “REDC members ensure that marketing messages communicate substantive, critical information about their therapeutic services — and are not simply an enticement to choose one facility over the competition. All express marketing claims must be substantiated or capable of substantiation with appropriate evidence when made.”

The remarks and concerns set forth in section 1 are applicable to this section. Often the first, substantive information about treatment centers is gleaned from reviewing the center’s website. A deeper dive may include employee sites like glassdoor.com, the groups on social media and parent advocacy groups like F.E.A.S.T.

The language utilized by the REDC in this subsection is effective, straightforward and substantive.

But, what is the REDC prepared to do in order to enforce that language? What investigative procedure do they have in place to review complaints from families? How far is the REDC prepared to go to stand behind these principles and if necessary, expel a member (and thereby lose revenue) if a rogue member refused to comply with those standards?

(6).

REDC members do not pay or receive anything of value in exchange for patient business.

This section contains some perplexing inconsistencies. For example, the section begins with the following language: “REDC members are committed to relying upon objective facts and open, honest communication — not financial enticements — as a way to engage stakeholders. REDC members do not offer financial incentives of any kind to patients, referral sources, or anyone else for the purpose of inducing (or rewarding) the referral of business.” [emphasis added]

But then, almost immediately thereafter, the following language appears:

“Travel: Reimbursement for travel, accommodations, and meals must be “reasonable.”

On the one hand, the REDC sets forth a standard that no financial incentives of any kind will be offered for the purpose of the referral of business. It then seemingly contradicts itself by reimbursing “reasonable” travel, accommodations, meals, gifts of $25 or less and production bonuses to W-2 employees.

The REDC then identifies that transportation scholarships and subsidies can be utilized but only sparingly.

It is not difficult to ascertain what the REDC is attempting to undertake in this subsection. It is attempting to establish an environment of open competition while providing direction to its member institutions as to what conduct is acceptable and that which is not. And yet in doing so, the families who would review this subsection could understandably be left confused.

Cleaning up the language in this subsection would not be painstakingly difficult and could provide clarity.

(7).

Prior to admitting a patient, REDC members clearly communicate the cost of treatment that may be required in both the short term and the long term.

The pertinent language of this subsection includes the following: “Treatment programs in our industry often must admit patients without full information about what payers will and will not cover. This lack of transparency in health-insurance reimbursement makes it difficult to predict the out-of-pocket burden on patients and their families. Despite this challenge, REDC members should do everything in their power to ensure that patients and families are as well-informed as possible about the cost of services and patients’ and families’ financial responsibility for those services, such that patients and families can make informed decisions about how that financial obligation is likely to affect them in both the short term and the long term. Prior to admitting patients, REDC members have honest conversations with patients and families about recidivism rates and the typical illness duration and course of care that may be required over a patient’s lifetime. REDC members accurately communicate regarding their prices, expectations about patient out-of pocket costs, and how long a patient is expected to require treatment.”

This language is clear, concise and arguably should be posted on the wall of the financial director’s office where the parents or patients will be meeting to make payments and to discuss financing of the treatment being provided. But, parents and patients also need to be advised of additional information. They need to be informed of the peer-to-peer process, the manner in which insurance entities process claims, that insurance entities can stop payment for treatment with 24 hours notice or less, that families may be forced to make immediate and often expensive travel plans to bring their loved ones home with little or no notice.

This type of information feeds into the requirement of, and necessity for discharge planning beginning the very first day of treatment. (As was cited in the 2012 AED Clinical Practice Recommendations.) With this additional information, families and patients will have a better understanding of possible unexpected costs and the financial pitfalls which could arise.

(8).

 REDC members disclose financial relationships and any potential conflicts of interest that might affect patient care.

The entirety of this subsection states: “REDC members alert patients about any internal or external relationships, financial or otherwise, that their programs have that might affect patient care. If a REDC member directs a patient from one program to another in which the member has a financial interest, patients should be informed of that fact. It is unethical for programs not to disclose to patients any relationships and/or financial incentive arrangements that might affect patient care. [See section 5, “Sound and Ethical Business Practices,” in the “Center of Excellence” document. Also see the “Marketing Best Practices” document.]” [emphasis added]

This section imposes on the REDC members a requirement of open and honest transparency. The issue then is to discern and define those relationships which “might affect patient care.”

In the past, several articles have brought to light the manner in which private equity firms have taken over the residential eating disorder treatment centers. The majority of the information has focused on the negative aspects of this type of ownership. No governmental oversight. No state regulatory oversight. Acquisition transactions kept secret. Treatment that results in greater reimbursement opportunities being pursued over treatment that may be more effective but result in lesser financial gains.

But there are certainly positive aspects. New financial resources directed toward treatment means more people receive treatment. Additional media outlets are informed of the deadly nature of this disease. Greater credibility and ability to bring financial weight to bear against insurance providers seeking to prematurely release patients because those insurance providers do not adhere to the DSM V or APA guidelines. These private ownership relationships are perceived to provide a more stable financial foundation in the present. As such, for reasons both good and bad, private equity ownership clearly and unequivocally, might affect patient care.

Therefore utilizing the REDC’s own wording and own criteria, the private equity ownership of these treatment centers might affect patient care, both in a positive way and negative manner. And yet, they are not disclosed to patients and families.

(9).

When participating in media interviews, REDC members are focused on educating the public and raising awareness about eating disorders.

This section states in material part: “REDC members embrace opportunities to participate in responsible and authoritative interviews aimed at educating audiences and raising awareness about eating disorders. Treatment programs have a solemn responsibility to be good citizens in all forms of media in which they participate.”

This is certainly an admirable statement and sets forth what should be the bare, minimum standards. But, in terms of “educating audiences,” does that also include informing families that there is a paucity of actual, evidence-based medicine in the world of eating disorders. That there is not a lot of medical professionals doing clinical trials with a large enough patient population. That the field of psychiatry has not developed to the point where it can reasonably assign empirical probabilities to different recovery outcomes.” Certainly, life skills, counseling and valuable treatment can be received at residential treatment programs and these programs in one way or another will be valued commodities in the eating disorder industry for the foreseeable future. But, as part of the educational process, certainly all options need to be presented even if in carefully vetted brief sound bites. Integrity of the message must predominate over financial gain.

Observations and Conclusions

Mental health in the United States has reached a crossroads. The Affordable Care Act is on life-support and in its current format, is not expected to survive. Business as usual cannot last.

The REDC is to commended for these steps. But, the question remains … is this merely a recitation of flexible, internal guidelines or is this intended to be the genesis of hard and fast rules upon which families and patients can rely? Is this the first map to a bold, new frontier where patients and families are placed first?

If so, implement procedures to enforce these guidelines. Turn these guidelines into rules. Empower families to interact with you at the highest levels. Give families a strong voice in the treatment process. Enforce these guidelines through administrative procedures and demand compliance from your members.

REDC, be the leaders you aspire to be. Do not just say the words. Undertake the actions openly, honestly, democratically. Through your actions, show you place your patients  and their families first. If you do these things, people will support and follow you. I know I will.

In writing of transparency, truth and integrity, I believe those traits must be demonstrated by all … even those who write of perceived inequities. And when mistakes or misinterpretations are made they should be owned and addressed.

After this article was published, a few trusted persons approached me and stated that the article contained facts which were incorrect. They pointed out the flaws and the manner in which the information in the article was incorrect and focused upon Jaffe Management’s innocent involvement. As a result, I conducted a deeper dive into the subjects of the article and discovered their viewpoints had merit. To the extent that any nefarious intent may have been directed toward Jaffe Management, that was not the intent of the article and should not be attributed to them. 

As a result, I believe that this clarification is necessary with apologies to those who were slighted in the article, believe they were being slighted in the article, or believe that nefarious motives were being assigned to them as a result.

In order that there is full disclosure, I will leave the article below in its entirety unedited.. But, the views expressed should be tempered by this clarification.

“PR is premised on truth, trust and transparency.”

            Richard Edelman, CEO Edelman Public Relations

“Disclosure and transparency are the currency of the Internet, and they are at odds with authoritarianism.”

            Evan Osnos, Journalist, New Yorker Magazine

I want to believe.

I want to trust.

I want to hope that the spirit of collaboration amongst treatment professionals who can save the lives of our loved ones exists.

I want to believe that groups like the Residential Eating Disorder Consortium (“Consortium”) and the Eating Disorder Coalition embrace at their core, the best interests of families and those who suffer from this insidious disease.

I want to believe that there is no conflict of interest and that the financial demands of private equity owners do not predominate over the needs of those who are suffering and dying from this disease.

And yet, the Consortium continues to make it so incredibly difficult … and yet, so incredibly easy to distrust, to draw obvious conclusions based upon the facts and their subterfuge and silence.

The Consortium’s underestimation of families, and their collective power and strength has become legion. In St. Paul’s second letter to the Corinthians, he states, “For ye suffer fools gladly, seeing ye yourself are wise.”

The most recent example of the hubris defining the Consortium’s nature was subtly disclosed in November 2018 when the Consortium released its Standards of Excellence Project (“STEP”). As previously noted, the first analysis of this STEP program will be published on Tuesday, January 15, 2019. But, in reviewing the STEP program, an understated, seemingly small issue jumped to light. Whereas 99% of people reviewing the substance of the STEP program would be solely focused on the substance of the document, one tiny detail would escape any notice or attention. At the bottom of the STEP document on certain pages, an address is listed. That address is 555 8^th Avenue, Suite 1902, New York, New York 10018.

And what entity conducts business from that address? Jaffe Management, Inc. Jaffe represents that it is a New York City based company providing full and partial management services to associations and organizations. Jaffe also represents that it provides full management services.

In most every law firm’s portfolio, we list that we provide services to our clients ranging from litigation services to counseling to management. And yet, to always maintain the appearance of impartiality and propriety, we never list our addresses on our client’s public releases or documents.

And so the initial question must first be asked, how significant and all encompassing is the work being performed by Jaffe which merits its address being included on the very document that is meant to define the REDC/Consortium for years to come? Yes, the REDC’s name is included at the top of the document. But the address at the bottom is not the REDC/Consortium’s address. Was the Jaffe Management’s involvement in this document so significant that it merited its address being included as the address for the REDC/Consortium? Why does the telephone number listed for the REDC/Consortium have a Brooklyn area code of 646? No REDC members have offices or treatment centers in Brooklyn.

Standing by itself these issues may not seem particularly pertinent. But, when one investigates additional clients represented by Jaffe Management we find … the Eating Disorder Coalition. The ED Coalition allegedly represents families whose loved ones are suffering from eating disorders. When you go to the ED Coalition website, one can discover that in terms of fundraising, a Gofundme page was set up and links to an entity known as the EDManager on behalf of David Jaffe. David Jaffe is the principal and owner of Jaffe Management. And so, both the ED Coalition and the Consortium are listed as clients of Jaffe Management. The Consortium uses the address of Jaffe as its home address. The ED Coalition utilized Jaffe as the public face of its fundraising arm.

In previous articles, we disclosed that for the last two years, both the Consortium and the ED Coalition have utilized the same lobbyist. Their current lobbyist, Center Road Solutions lists as its managing principal, Katrina Velasquez. Ms. Velasquez is also listed on the Staff of the ED Coalition employed in the capacity of Policy Director.

The Coalition was instituted for the purpose of being the liaison with state and federal agencies, administrators, lobbyists and legislators on behalf of the eating disorder industry as a whole. And yet, many of the same people are employed as officers of both entities. Their lobbyist is the same. The money being paid to the lobbyist is to pursue the agenda dictated by the private equity firms. Both the Consortium and ED Coalition are being managed by the same management company located in Manhattan.

When one considers the underlying facts, there is but one inescapable conclusion … the needs of the eating disorder industry and community are subservient to and are being controlled and dictated by the private equity firms which control both the Consortium and the ED Coalition. These firms wield the financial power to dictate the course and direction of the eating disorder profession. The employment and utilization of the management company, the lobbyists, the financial resources, the focus of the treatment centers are based upon increasing the wealth of private investors and of meeting the financial dictates of future debt requirements.

And for those families who are suffering, and whose loved ones are dying, ask yourself one question … has the death rate caused by this disease, that is, one person every 62 minutes … has this death rate improved at all in the last 11 years? 11 years since the Mental Health Parity Act was passed. 11 years in which the Affordable Care Act was passed. 11 years since private equity firms came into the eating disorder industry and essentially bought out the treatment centers. What has been wrought since the Wild West became the norm for the industry?

Our loved ones continue to die. They are the precious sacrifices we mournfully lay on the altar of profit at the expense of enlightenment.

“There you go again.”

            President Ronald Reagan, 1980

“There is a paucity of evidence-based medicine in the world of eating disorders. … There’s not a lot of people doing clinical trials with a large enough patient population. So, you know, I’m not aware of a whole lot of good data … the field of psychiatry has not developed to the point where it can reasonably assign empirical probabilities to different recovery outcomes.”

          Dr. Ken Weiner, Medical Director, ERC, August 27, 2015

ERC’s New Study

On December 18, 2018, the Eating Recovery Center (“ERC”) announced it was launching a new study examining elements of treatment that are necessary for “… successful reduction of and/or abstinence from binge eating and other eating disordered behaviors in a sample of patients with binge eating disorder (BED) and Bulimia Nervosa (BN).”

This study is going to be conducted through ERC’s Binge Eating Treatment and Recovery (BETR) Program. This self-professed “groundbreaking study” is intended to examine predictors of successful treatment in 100 consecutive patients admitted to ERC’s Residential and Partial Hospitalization program. Purportedly, patients will be followed throughout their time in treatment and for 12 months following.

100 patients.

According to ERC’s website, eight percent (8%) of American adults will suffer from binge eating disorder. In 2017, the approximate number of adults in the United States was 252,063,800. If ERC’s number is accurate, the number of adults suffering from binge eating disorders in the US is 20,165,104.

Therefore, at 100 patients, ERC will be studying 0.00000496% of adults suffering from this disease. To put this number in perspective, if you took the entire populations from the states of South Carolina, Alabama, Louisiana, Kentucky and New Mexico, and picked 100 persons randomly from a combination of these states (not from each state), you would have the same percentage of the number of adults suffering from this disease that are going to be studied. Again, these are ERC’s numbers and percentages are based upon the United States Census.

ERC’s study will not include any persons receiving treatment at any other for profit treatment center, non-profit center, university based facility, international facility or academic research facility located anywhere else in the world.

This study will take place despite the fact that ERC’s own CEO/Medical Director, in sworn testimony admitted that one cannot assign empirical probabilities to different recovery outcomes.

In ERC’s press release about this study, ERC claims: “To date, the BETR program has served over 1,000 patients in its brief five-year tenure, with excellent treatment outcomes and high patient satisfaction metrics. A recent survey of patients in the BETR program concluded that 88% of the patients stated “life is better” following treatment, with improvements in areas of stress management, sleep, management of health-related and medical issues, and decreased depression and anxiety symptoms along with decreased (or abstinence from) eating disordered behaviors.” [emphasis added]

88% ? If we were to review and study ERC’s published, past history of claimed satisfaction rate, then truly, “Something is rotten in the state of Denver … err.. Denmark.”

ERC’s Prior Claims

On its website, ERC represents to the general public that with regard to its Child & Adolescent Inpatient/Residential and Partial Hospitalization Programs, “… 99% of parents of child/adolescent patients report that treatment at Eating Recovery Center was helpful.” [emphasis added]

Ninety-nine percent (99%)!

We previously pointed out that this representation is really quite remarkable since the highest score awarded by the respected American Customer Satisfaction Index to any health care provider was… 76%.

But, purportedly ninety-nine percent (99%) of ERC’s patients report that the provided services helped. This statistical number, since it must be exactingly precise so as to not constitute a gross misrepresentation to the general public, was obviously computed only after ERC developed a fool-proof system whereby 100% of its patients and their families not only stayed in communication and remained responsive after they were discharged (or after the applicable insurance company decided to discharge their loved one and only pay for stepped down treatment) and 99% of them state that the treatment was helpful. 

But, if that is the case, we now have a significant discrepancy in ERC’s numbers. In its recent press release, ERC reported that its Binge Eating Treatment and Recovery Program only had an 88% satisfaction rate amongst 1000 or more patients and their families. But overall, ERC is reporting a 99% satisfaction rate with its program. The only way to rectify this disparity and have all numbers be accurate is if you calculate the number of consecutive patients ERC would have to treat with a 100% satisfaction rate to raise the satisfaction rate of 88% for its BETR program to a satisfaction rate of 99%.

This number? ERC would have to treat 11,000 additional, consecutive patients with a 100% satisfaction rate, to bring its 88% satisfaction rate up to 99% for the program. ELEVEN THOUSAND CONSECUTIVE PATIENTS AT A 100% SATISFACTION RATE.

At this point, we could cite additional information indicating that employee morale at ERC has not improved, that employee satisfaction with their CEO has dropped to 46% and that the majority of the reviews from disgruntled employees pertain to ERC being more concerned about generating a profit than patient care. But, these issues were previously disclosed in prior articles and we wish to stay focused on the upcoming study.

The logical conclusions drawn from the facts, statistics and known information is that ERC is an entity that misrepresents its satisfaction rate, has numerous complaints about its working conditions from both current and former employees, places far too much emphasis on profit over people and more than 50% of those employees who reported were not satisfied with the leadership of the company.

Issues with the representations made by ERC’s Binge Eating Treatment and Recovery Program

Before addressing additional issues present within the parameters of the proposed study, we must first address another “interesting” representation with the BETR Program itself. In its December 18, 2018 press release, ERC represented: “ERC’s PHP for BETR, as with all of eating disorder programs, offers a unique standard of care as the program provides 80 hours of intense treatment a week.”

80 hours of intense treatment a week? For each individual patient? In its Partial Hospitalization Program?

A patients in ERC’s PHP program in 2017 reported the following: “In PHP, you see your therapist 3x a week, your psychiatrist 1x a week, and your dietician 1x a week. You also have one weekly rounds session – about ten minutes- where they go over what you need to accomplish. … There are also other “fluff groups” like art therapy … yoga and team building (karaoke, catch phrase, board games, etc). Expect a lot of busy work.”

As for the claimed 80 hours of intense treatment a week, that is really quite remarkable. Especially since ERC on its website represents to the public that its child and adolescent partial hospitalization program offers “11 hours of daily programming.” Even if this is done every day of the week, that is only 77 hours.

In short, there is no logical basis supporting ERC’s representation that its BETR program engages in 80 intensive hours per patient per week. This again demonstrates that any program can publish any representations it wants. Those representations do not need to have supporting substance, facts or merit behind them. And entities that abuse the public trust in such a fashion must hope that no one reviews the numbers, finds the discrepancies and publishes its falsehoods.

And our children continue to pay the price.

Obvious additional issues with the Study

To paraphrase Dr. Weiner’s sworn deposition testimony, clinical trials with small patient populations do not result in good data. The most obvious issues with the upcoming study based on ERC’s history and the press release include:

1. A laughably low patient population;
2. Only ERC doctors and professionals are involved;
3. Not being overseen or supervised by independent outside third parties thereby giving some assurance of unbiased, quality control;
4. The study’s disclosed, proposed protocol is rife with Confirmation Bias;
5. The underlying data to ascertain the predictors of successful treatment were not disclosed;
6. ERC did not disclose whether this study also involved a “double blind trial”;
7. What objective findings and criteria are being relied upon to determine “success” of the program;
8. What outside agencies, universities and research-based facilities are being used to ascertain and confirm that objective, professional results are going to be obtained;
9. What raw data is being utilized and what entities are reviewing, studying and interpreting the raw data in an effort to convey some semblance of credibility.

The Obvious, Inescapable Conclusion

.00000496% of adults suffering from binge eating disorders are included in this study. The guinea pig patients are subject to ERC’s “standards” alone. ERC has a history of publishing grossly inflated success rate numbers in order to boost its “reputation.” According to its CEO, small patient populations do not result in good data and the field of psychiatry has not developed to the point where it can reasonably assign empirical probabilities to different recovery outcomes.

But, in anticipation of ERC’s presumably, glowing report which will be released in approximately 12 – 18 months, let us speculate as to the anticipated findings which will be disclosed:

“ERC is proud to report that of the 100 persons in this ground-breaking study, 98 reported significant improvement. ERC’s Exposure and Response Prevention Therapy to the treatment of BED and Night Eating Syndrome showed marked improvement in the overall moods of those 98 persons. Further, the medical markers we studied were able to establish a pattern of increased biological activity and symptom reduction as weight status was stabilized. In addition, as the significance of comorbidity increased, this in turn resulted in more intensive treatment for binge eating disorders which we properly diagnosed and treated. Following discharge, those 98 patients showed a remarkable ability to reacclimate themselves to mainstream society and thanks to us, their skill acquisition improved.”

But … let us assume arguendo, this “ground-breaking” study does not result in the success rate ERC anticipates. What if instead of the anticipated 98% satisfaction rate with this study that we expect ERC to publish, the raw data instead indicates not only was there no improvement in the majority of the 100 guinea pig patients, but many of those patients showed regression? Would these results be published at all? If so, wouldn’t this be an indictment of ERC’s treatment protocol, if not possible medical malpractice? This would inevitably result in a probable loss of future revenue stream. When you consider that in the next five years, ERC has one quarter of one billion dollars in debt which comes due and must be addressed. $250,000,000.00. This study has no published criteria. This study has no outside parties involved. And ERC has a very substantial financial incentive to be less than forthcoming.

ERC had the opportunity to initiate a broad based, industry wide study which could have included all of the treatment centers in the Residential Eating Disorder Consortium and the brilliant leaders in the academic and research communities. This type of study is tailor-made for collaboration amongst colleagues. Dr. Weiner sits on the REDC’s board of directors with professionals from 5 other treatment centers all of which could have been included. Imagine, a study which would have been inclusive of other major treatment centers, their doctors, scientists, medical professionals and patients. Imagine, the signal that would have been sent … that it IS about the power of the message … and not the image of the messenger. But that $250,000,000.00 in debt is not going to repay itself!

ERC started down the path of false statistics and misrepresentations regarding their satisfaction rate a few years ago. To anyone who studies ERC’s statistics and misrepresentations, and to those who have access to a certain deposition transcript, the prevarications are obvious. And now, we will be left with a so called “ground-breaking” study whose results will be subject to wide-spread criticism if not outright derision.  A study that will help no one but will undoubtedly be used to bolster already suspect satisfaction rates.

And all the while, our loved ones continue to die.

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

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

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

Eating Disorder Industry

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

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

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

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

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

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

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

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

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

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

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

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

Address the Issues

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

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

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

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

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

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

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

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

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

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

Christmas is upon us. Homes aglow with twinkling lights. Holiday music playing in the background. Christmas trees ablaze with so many lights they resemble thousands of stars on a clear night. The smell of food cooking. A crackling fire ablaze in the hearth. The laughter of innocent children echoing through the house. Carols sung in church … Surely, a time for the rebirth of our faith and hope for the future. We are reminded so vividly of the very first Christmas present… that is, a parent’s love for their beloved children.

2018 has marched on and a new year is upon us. As we think back upon this past year now is the time for joy, and love and yes … reflection. And once more on Christmas Day, I ask you to light a candle, a candle to bring light to darkness.

The past two years on Christmas Day, candles were lit literally around the world… California, Oregon, Indiana, New York, Virginia, Florida, Oklahoma, many other states and of course, our own Great State of Texas.  Germany, England, France and Australia checked in and lit candles which burned brightly on that day bringing the light of love and hope to otherwise darkened hearts and in remembrance of not just my beloved daughter, Morgan, but others whose hearts, minds and souls were taken from us by this insidious disease. And this year, so many others to remember … Maggie Gross … Javiera Munoz … too many others to list.

The memories of those who were taken are daily reminders of the trials and tribulations which not only test our will, but groom us, prepare us for an ultimate challenge that could by its immensity, otherwise break us. Our hearts are challenged. Our intellects are challenged. Our very souls are challenged. The conflict is before us. If we are resolute, if we find a way to just stand, fighting through these trials could reveal the essence of our very soul.

When your soul’s purpose and its journey are made clear, God will find a way. When this transpires, you do not have the luxury of giving up. You cannot relent.   There is too much work to do. There are too many lives to save. The mission that Morgan started as set forth in her journals will be carried forward not just by me, but by you, all of you who share a vision that we must be bold and forward thinking.

Morgan’s Christmas gift to me the last few years and which only now is being realized more with each passing day is a child’s unconquerable, unstoppable, unconditional love for their parents.  For truly, if a parent’s love for their child is the very first Christmas gift, then surely, a child’s love for their parent… that candle of life, burning so brightly in a parent’s heart and soul, a light that can never be extinguished, is the perfect way to say “thank you” for that first Christmas gift.

And so I call upon all who read this … parents, children, family members, doctors, counselors, business people, to remember and to rejoice. On Christmas Day, light a candle of love, a candle of hope, a candle of remembrance, a candle of joy. Let that one flickering flame bring comfort to a dark room, a darkened heart, a darkened soul. Embrace those who have survived. And remember those who have been oh so cruelly taken.

Remember that Army of Warrior Angels:

Morgan Dunn

Kelly Burk

Elisa McCann

Anna Westin

Maggy Gross

Karla Alvarez

Karen Carpenter

Isabella Caro

Margaux Hemingway

Christy Henrich

Anne Sexton

Christine DeMasse

Dr. Kamala Dansinghani

And millions of others.

Once again on Christmas Day or Evening, 8 weeks and two years to the moment she left me, I will light a candle to honor my beloved daughter. I will remember Morgan’s passion, strength, fighting spirit, and inspiration, will say a prayer and will look to our tomorrows with hope, with faith, with strength, with resolve and with love.

I invite all of you for just one moment, one single, perfect moment on one silent night…not just in your head, but in your heart and in your soul, rejoice that you are loved and that you love others. Hug your children, tell them you love them, and know … know for an absolute certainty, that the love you feel is unconditional and all powerful. And light one candle.

One candle to light the way.  To illuminate the darkness.

The “Christmas Blues” suffered by many people can be acute. This is especially true for those who had a child, a spouse, a loved one, taken by eating disorders. You see the Joy of the Season experienced by society and you wonder, will you ever feel this again. There are days where the very act of waking up and getting out of bed and merely existing, seems so incredibly difficult. And one can’t help but wonder … Is life meant to be so very hard?

For the vast majority of people who share this 3^rd rock from the sun, I believe the answer is a resounding “No.” They are born, go to school, are generally happy, face the every day trials and tribulations that most people have, they may or may not go to church, they have their hearts broken by their first loves. They go through high school and leave in one form or fashion, most graduating.

If they are lucky or smart or come from a family of some wealth, they may go to college, where they either graduate or not. They eventually find a partner or spouse, they may have children, they find a job or career … and the cycle repeats itself. The obstacles placed before them seem large… insurmountable, too daunting and the obstacles define their very existence.

As their life enters its twilight and nears a close, some may  wonder if the world is a better place because they were in it. Did they leave a lasting impression that generations which follow will know about or study? And again, for the vast majority, the answer is a resounding “No.”

For most of our lives, we are content. Or if we are not content, we may feel hopeless, unaware of how to make a true difference. And, that is before we even get to the issue of “why” we are going to make a difference. For most of us, life is not hard. We may aspire to some sort of greatness that we cannot even see let alone possibly understand and we pray for greater  insight obtained by looking ever deeper. But, oh those obstacles! We cannot get past them. They are Olympian in height, as vast as the limitless void of space. And this is generally true for automobile mechanics, janitors, sanitation workers, teachers, attorneys, business people of all stripes. Many may wonder, is this all there is to life? The obstacles become our natural boundaries and borders. Our obstacles define the boundaries of our very existence.

It does not matter how high our IQ, it does not matter the size of our bank accounts … we live, most will love, most will have children, some may even say they “need to make a difference.” And yet, after we die, at most our names will be remembered on a tombstone by loved ones for a generation.

Most of us believe in a higher power, a God. Some will embrace the dogma of an organized religion. Some will read a copious number of books in pursuit of insight into their soul or spirituality.

And for them.. for the 99.999% of the people who occupy this 3^rd rock from the sun will experience that type of life, the obstacles will define the boundaries of their existence and a simplicity of spirit and existence keep them within those boundaries. And truly, that type of life is simple. It is not hard. I am acutely aware that for most of my existence, I was certainly included in that 99.999%. And life seemed and was simple.

But … what of the .001%. Does anyone think George Washington was in that 99.999%? He was from a farming family. He was a surveyor. Do you think he envisioned himself as a Father of a Nation? No, probably not. But, somewhere along the way, some divine intervention happened, he instinctively got out of its way and let Divinity guide him as he managed to lead a ragtag militia to the defeat of the world’s then greatest military force. This gave birth to the greatest nation this 3rd rock had seen. That was not supposed to happen And yet, once he started that journey, he could not stop. The path was laid before him.

Abraham Lincoln. He was from a poor family. Became a lawyer. Served in Congress and lost. Then… divine intervention got in the way. When he saw that western states and territories were being opened to slavery, an institution so repugnant to him, that inspired him to reenter politics. You know the rest. Was his life easy? Was life made easy for him?

In Washington’s case, the Freedom of a People. In Lincoln’s case, the Freedom of a Class of People from Oppression. Life for both Washington and Lincoln was surely a daily trial.

Nelson Mandela. Imprisoned for decades. Enduring unimaginable hardships. And through it all … his soul found its path. The hard journey he encountered steeled his soul and became his platform from which he could lead and inspire. And a new nation, a better evolved nation was born. He had the vision of being able to be the conduit through which a people could find freedom… a chance of life.

We all know the case of Martin Luther King.

The list of leaders is well known and I submit that those people have something in common … the obstacles that are placed before them, those obstacles that otherwise would define their existence and for the vast majority of people lead to ordinary, simple lives … are broken down NOT because of what they do or what they believe … but by the causes their soul’s journey encounter and draw them toward. Freedom of a People. Freedom from Oppression. Freedom of the Soul.

I submit that those few people don’t knowingly or necessarily even choose their paths through life. They cannot. The every day hardships those persons with great souls surely endured nonetheless molded them. They survived their trial by fire.

An author named Sherrilyn Kenyon is quoted as saying: “Strength through adversity. The strongest steel is forged by the fires of hell. It is pounded and struck repeatedly before it is plunged back into the molten fire. The fire gives it power and flexibility, and the blows give it strength. Those two things make the metal pliable and yet able to withstand every battle it’s called upon to fight.”

I believe that one cannot choose the path his or her soul must take. No. Instead, I believe that a soul chooses it’s own path for all of us. And that path is rarely the easiest path. It is not smooth, devoid of cracks. We learn very little of ourselves by treading an easy, smooth path.

And until October 30, 2016, I was defined by my well-defined boundaries and obstacles.  Life was simple. Very few challenges of the soul. And but for that dark Sunday night, I would have lived a simple life and died a simple, shallow, superficial man.

And then …

I was not ready, and believe I am still not ready to shoulder the burden of my soul’s journey. I do not even know where that journey is leading. I only have what meager gifts have been bestowed upon me to try to figure it out. And those gifts are not nearly enough. The burden of unimaginable and unspeakable anguish weigh so incredibly heavy on all aspects of my existence… the head, the heart, the soul. Yet something is still guiding me, telling me that something in the future already exists, something that must be discovered, found and brought forward. I do not know if I am that person who is supposed to find it, especially since I don’t even know what is to be found. My place may be merely to clear a few boulders off a soulful path for others, others who are far greater or more insightful than me, someone with more insight or soulfulness to take the next, perilous steps.

The burden on many days seems too much to bear. And yet, if I do not keep an open heart, and open mind and open eyes … if I turn away from my soul guiding me, I will surely lose more than just physical things, I will lose more than just money … I will lose my very soul. I will lose my daughter’s legacy. Even still, most days I still so wish I was defined by my boundaries and obstacles. I wish life was simple. It is not. It cannot be. 

I do not want this. I have no choice. My soul won’t let me. And the burden seems oppressive.  If I don’t shoulder it, if I do not find a way to get stronger, who will pay the price. What lives could be taken if I turn my back on my soul? What lives could be saved if I stay on that soul’s journey and keep walking down that path? And if I caved, if I succumbed to the hardship, could I live with myself? Would my soul let me?

A simple life was not meant for the twilight of my life. Now, make no mistake, there are days when inspiration comes and when people come to me and tell me that I have made a difference, and it fills my heart with renewed strength and allows me to take the next steps on my soul’s journey.

And so, the journey continues. Let the Fires of Hell do their worst. An uncertain future is before me. And I surely must and will stay on the path, no matter how painful, no matter how complex. There is an Army of Warrior Angels who demand nothing less. My beloved daughter’s mission, her message demand nothing less.

And the next steps await.

On Sunday, December 9, 2019, I attended church services at Highland Park United Methodist Church in Dallas, Texas. The sanctuary was awash with vibrant, red poinsettias. Long strands of garland interspersed with large red ribbons were draped over the choir loft and majestic, organ pipes. The world-class choir was elevated to an even greater level by a soprano soloist whose angelic version of “O’ Holy Night” brought many to tears.

The lead pastor is Reverend Paul Rasmussen. Reverend Paul is not one of these television evangelist type ministers screaming fire and brimstone, urging one and all to, “LET THE DEVIL COME OUT! REACH DEEP IN YOUR POCKET FOR THE LOOOORD!!” No instead, Reverend Paul’s sermons are impassioned, they weave in every day life experiences with biblical references and one can readily sense that his message is not just coming from his head … but his heart and soul as well.

On this day, he held up a plastic baggy filled with a broken light bulb. He noted that at one point, we all have dropped a light bulb and watched it break into many pieces. We then routinely get a broom and dustpan, sweep the broken shards of glass away, grab another bulb and go about our day. After all, how can we be expected to fix a shattered light bulb? It is broken beyond repair. In any event, most people wouldn’t even know where or how to begin to repair it. Do you start with the base? What about the wiring? Do you assemble the larger pieces of glass first? Even trying to come up with a plan to repair this fragile, broken item is daunting. It is much easier to simply replace it.

Reverend Paul then poignantly described to some extent, we humans are all broken light bulbs  We all have flaws. But, God doesn’t simply discard us because we are fractured. As a Loving Father, God has the recipe for salvation and it is up to us to find that journey of healing.

And at that point, the analogy and message became quite clear. I read on a number of Facebook groups, on other internet groups, through social media and through speaking with doctors, counselors and professionals in the eating disorder industry, of the fear, the hopelessness, the grief, the anger, the frustration and the helplessness felt and expressed by parents whose beloved children are afflicted with this damnable, insidious disease. They see their child, their very heart, slowly wasting away, self-harming, acting out, abusing drugs or alcohol speeding what they fear will ultimately result in the death of the most precious thing they hold dear. They are shaken to their very core. Their light, their love, their hope for the future lay at their feet, unworkable shards of glass, fractured to a point beyond measure or repair. They also know that this is a light bulb that they cannot merely sweep up, discard into the trash bin and then replace. And yet, many don’t even know where to begin to try to repair this fragile, broken life. Fear and despair cloud their vision and falsely point to a path that leads to even greater catastrophe. Where does one begin?

Parents, I so wish I could give to you as a Holiday Present, a copyrighted repair manual complete with blueprints for a successful reconstruction of a human life being torn apart by this disease. Alas, I cannot. In fact, in some ways, I feel like the mythical character Jacob Marley. We know Marley as Ebenezer Scrooge’s deceased business partner, now a chained and tormented ghost, doomed to wander the earth forever as punishment for his greed and selfishness when he was alive. Marley roams restlessly, witnessing the hardships others suffer and lamenting that he has forever lost his chance to help them. But then, in an ironic twist of fate, Marley arranges for the three spirits to visit Scrooge and gives his friend an opportunity for redemption, which Marley tells him was “… a chance and hope of my procuring.” Until I breathe my last, my reality is that it is too late for me. But, it is not too late for you.

Moms … Dads … parents, I urge you to simply start with a beginning, any type of beginning. It doesn’t matter if it is the base, the electrical wires or the shards of glass that you address. But, address it you surely must. I can suggest that perhaps a starting point may be found by steeling up your courage, staring at yourself in a mirror and then, look within yourself. Right now, you may be overwrought with fear, despair and yes, perhaps anger. If those emotions dictate your every waking thought, if they dictate your decisions, there is very little doubt that the path upon which your journey will take you will be filled with mistakes, negativity, false hope and dead ends.

We also know that the manner in which we deal with fear and despair is as individual as the person experiencing it. So, where is a starting point? Perhaps for many, a starting point could be … educate yourself! Read vociferously. Actively join and participate in parent support groups. Start support groups in your community if you are able. Read academic research papers and studies. When you speak with treatment professionals, ask as many questions as you deem necessary. Arm yourself with knowledge. “Ipsa scientia postesta est.” [Knowledge itself is power.] That way, when you confront doctors, counselors, insurance claims representatives you will know much more than they believe they know and you can argue with more authority for more effective treatment protocols. You will be able to cite independent studies. You will empower yourself. As you learn, as your strength grows you may learn to take those negative emotions of fear and despair, and instead of them defining you in a negative manner, you use them to motivate you, to inspire you. Do not ignore those emotions. They are currently present in your life. However, the only place that fear can exist is in our thoughts of the future. It is a product of our imagination, causing us to fear things that do not at present and may not ever exist. And isn’t that near insanity?

Moms … Dads … You can save your beloved child. You will find your voice. And maybe along the way, you may find, or you may rediscover your very soul.

In the very first scene in the award winning show, “The Newsroom,” Jeff Daniels, who is playing a cable newscaster, is appearing as a guest speaker at  Northwestern University. A young college student asks him the following question, “Can you sum up in one sentence or less … what makes America the Greatest Country in the World?” After first dodging the question, he is pressed for an answer by the moderator of the event. His candid response follows:

And you—sorority girl—yeah—just in case you accidentally wander into a voting booth one day, there are some things you should know, and one of them is that there is absolutely no evidence to support the statement that we’re the greatest country in the world. We’re seventh in literacy, twenty-seventh in math, twenty-second in science, forty-ninth in life expectancy, 178th in infant mortality, third in median household income, number four in labor force, and number four in exports. We lead the world in only three categories: number of incarcerated citizens per capita, number of adults who believe angels are real, and defense spending, where we spend more than the next twenty-six countries combined, twenty-five of whom are allies. None of this is the fault of a 20-year-old college student, but you, nonetheless, are without a doubt, a member of the WORST-period-GENERATION-period-EVER-period, so when you ask what makes us the greatest country in the world, I don’t know what the fuck you’re talking about?! Yosemite?!!!

We sure used to be. We stood up for what was right. We fought for moral reasons, we passed and struck down laws for moral reasons. We waged wars on poverty, not poor people. We sacrificed, we cared about our neighbors, we put our money where our mouths were, and we never beat our chest. We built great big things, made ungodly technological advances, explored the universe, cured diseases, and cultivated the world’s greatest artists and the world’s greatest economy. We reached for the stars, and we acted like men. We aspired to intelligence; we didn’t belittle it; it didn’t make us feel inferior. We didn’t identify ourselves by who we voted for in the last election, and we didn’t scare so easy. And we were able to be all these things and do all these things because we were informed. By great men, men who were revered. The first step in solving any problem is recognizing there is one—America is not the greatest country in the world anymore.

That scene is one of the most impactful opening scenes of any television show in recent memory. And although fictional, is there any legitimate doubt as to the accuracy of those remarks ringing true today? Especially in the field of mental health and more specifically in the eating disorder industry.

But, we are not here today to bury America. Instead, we are here today to praise Australia.

On Sunday, December 9, 2018, Christine Morgan, the CEO of the Butterfly Foundation issued a press release stating that the Prime Minister of Australia announced an amendment to Australia’s Medicare Benefits Scheme designed to improve access and affordability of appropriate eating disorder treatment across Australia. One executive stated, “The socio-economic impact of eating disorders on a person’s life is one of the most severe and enduring in Australia. The introduction of a Medicare response into the health system is the most significant and necessary reform. Without a Medicare response other system reforms that are still needed could not be considered.” [emphasis added]

Australia’s new benefit scheme in part provides:

• A dedicated single Medicare Benefits Scheme item number for eating disorder treatment for those with severe and complex illness, delivering up to 60 Medicare funded sessions of treatment – 40 psychotherapeutic and 20 dietetic across the range of eating disorders – anorexia nervosa, bulimia nervosa, binge eating disorder and atypical presentations.

• Diagnosis by a GP and mental health practitioner recognizing that these psychiatric illnesses have a significant physical impact and integrated treatment is essential.

The Press Conference announcing this new law was momentous as well. It included politicians, foundations, counselors, and family members all united as one. The transcript from this Press Conference can be found here:

https://www.pm.gov.au/media/press-conference-butterfly-foundation

Standing by itself, this achievement is incredibly note worthy. But,  this is only the latest event in what now appears to be a concerted government – private enterprise collaboration to address this insidious disease. Australia along with New Zealand has a recent history of being progressive, of confronting a problem head on and objectively seeking to find solutions. In 2014, The Royal Australia and New Zealand College of Psychiatrists issued new Clinical Practice Guidelines for the treatment of eating disorders. These Guidelines included policies and procedures for the admission of children and young adults, guidelines addressing in-patient management and outpatient care, hospital care, residential care. It was free of corporate bias with no specific economic agenda. Treatment will be made available for groups of people who previously would not have been able to obtain help.

Australians have been given hope. They know that their government listened to their concerns and fears and took affirmative, strong action. Research and treatment are not being driven by private corporations whose interest begins and ends with their profit margin.

Meanwhile, back in the United States

Status quo ante reigns, no progressive, affirmative bold conduct is being undertaken and our children continue to die. In the halls of Congress, strengthening and increasing the financial gains of the private equity overlords predominates lobbying efforts. Nowhere is this more obvious than in analyzing the 2018 payments to the eating disorder lobby and the specific bills being lobbied.

In 2018 alone through the end of October, the Eating Disorder Coalition, the Residential Eating Disorder Consortium (“Consortium”) and the National Eating Disorder Association (“NEDA”) paid their now unified lobbyist a combined $250,000.00. This number is expected to exceed $325,000 by years end. And what did the eating disorder industry buy with this money? The specific bills and resolutions the lobbyist was instructed to lobby involved:

1. On behalf of NEDA, H.R. 1625, the “Consolidated Appropriations Act of 2018,” related Labor and Defense Appropriations Acts and House Resolution 428 and Senate Resolution 419 both of which recognize February 26, 2019 – March 4,2018 as “eating disorder awareness week.” NEDA paid the lobbyist $60,000 for this work.

2. The Consortium paid the lobbyist $100,000 to lobby on the following matters:

1. Amdt. 2222 “Bipartisan Health Care Stabilization Act of 2018” to H.R. 1625 “Consolidated Appropriations Act, 2018,” all provisions. H.R. 4666 “Premium Relief Act of 2017,” all provisions. S. 1835 “Lower Premiums Through Reinsurance Act of 2017,” all provisions. Issues pertaining to Association Health Plans- 29 CFR Part 2510, RIN 1210-AB85, all provisions. Issues pertaining to Short-Term, Limited Duration Insurance- 26 CFR Part 54, RIN 1545-BO41, all provisions. P.L. 114-255 “21st Century Cures Act,” all provisions. H.R. 6311 “Increasing Access to Lower Premium Plans and Expanding Health Savings Accounts Act of 2018,” all provisions.S. J. Res 63 “A joint resolution providing for congressional disapproval under chapter 8 of title 5, United States Code, of the rule submitted by the Secretary of the Treasury, Secretary of Labor, and Secretary of Health and Human Services relating to “Short-Term, Limited Duration Insurance”, all provisions. H.R. 6898 “Maintaining Protections for Patients with Preexisting Conditions Act of 2018”, all provisions. [emphasis added]

3. The ED Coalition paid $90,000 on the following issues: Senate Bill 3158, deemed the 2019 Department of Labor Appropriations Act and the aforementioned H.R. 1625, the “Consolidated Appropriations Act of 2018.

That is the totality.

That is what almost 1/3 of a million dollars in lobbying bills gets you. No additional treatment funding. No additional university based research funding. No mandatory increase in training on eating disorders in medical schools and internships. No new laws policing the out of control private equity firms who are running amuck in the eating disorder industry.
So what do you receive? Lobbying to cut off much needed help for families.
Short-term, limited-duration insurance is a type of health insurance coverage that is primarily designed to fill gaps in coverage that may occur when an individual is transitioning from one plan or coverage to another plan or coverage, such as when they are between jobs.

The Rule proposed by the Secretary of the Treasury, Secretary of Labor and Secretary of Health and Human Services provides consumers with more affordable options for health coverage. Under this Rule, consumers would have the ability to purchase short-term, limited-duration insurance policies that:

1. Are less than 12 months in duration;
2. Contain important language to help consumers understand the coverage they are receiving, and;
3. May be renewed for up to thirty-six (36) months.

Parents, moms, dads, families … The Residential Eating Disorder Consortium paid the unified lobbyist to oppose short term, limited duration insurance policies. You read that correctly. To reiterate, the Consortium paid the lobbyist to oppose short term, limited duration insurance policies.

These insurance policies could provide the ability to pay for life saving treatment for our loved ones. And yet, the Consortium opposes it? To double check, I looked at the specific language utilized in the Senate Joint Resolution 63. The totality of the language states:

Resolved by the Senate and House of Representatives of the United States of America in Congress assembled, That Congress disapproves the rule submitted by the Secretary of the Treasury, Secretary of Labor, and Secretary of Health and Human Services relating to “Short-Term, Limited Duration Insurance” (83 Fed. Reg. 38212 (August 3, 2018)), and such rule shall have no force or effect.

To triple check, I then looked at the language of the Rule submitted by the Secretaries and recorded at 83 Fed.Reg. 38212. The exact language  summarizing this rule states:
This final rule amends the definition of short-term, limited- duration insurance for purposes of its exclusion from the definition of individual health insurance coverage. This action is being taken to lengthen the maximum duration of short-term, limited-duration insurance, which will provide more affordable consumer choices for health coverage.

And all of the treatment centers who are included in the Residential Eating Disorder Consortium not only oppose this provision, but are paying a lobbyist to oppose short-term, limited duration insurance policies which would potentially provide payment for life-saving treatment.

Is it because if this type of insurance passed and became law, it would reduce the profits for the insurance providers while increasing their costs? Is it because it could make treatment decisions in accordance with insurance policy language and the DSM V more problematic for treatment centers? Is it because the private equity firms which now control the Consortium and ED Coalition are in bed with the insurance industry?

Whatever the reason, the daunting obstacles confronting families who suffer from eating disorders are being exacerbated by the greed of the private equity firms which own the treatment centers and the insurance industry. And the cost to pay for this greed? The lives of our loved ones at the rate of one death every 62 minutes. At this point, you may use whatever word you wish … reprehensible, unethical, disgusting, or vile to define the state of the eating disorder industry in the United States.

As the mantle of leadership and insight into treating and researching eating disorders is firmly grasped by Australia, they are to be commended and even admired for their vision and wisdom. And as for us? The reality of why America is not the greatest country in the world comes more into focus.