Questions, Answers and Issues

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 21st 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 21st 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?

One thought on “Questions, Answers and Issues

  1. This is an incredibly great article underlining all the problems in this industry…no one follows any given protocol, there is no protocol or treatment standard.

    Like

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