The past few days have seen continuing examples of the dysfunctionality which exists within the eating disorder community. Territorialism. Back stabbing. Revelation of concerted efforts to undermine advocates who disagree with other’s points of view. Self-importance. Lack of vision. Envy. Behaving as if this deadly, insidious disease was merely a 9^th grade failed, social justice laboratory experiment.

And all the while, our children continue to die. Sometimes we have to be reminded of why we fight. Why we must put aside our egos, our flaws and the petty differences which today define so much of the conduct occurring within the community.

The following story was posted on my Facebook page this past weekend. Although written in 2013, its essence, its emotion, its pain, its raw reality is as real and impactful today as it was the day it was written. The anguish which exists within the soul when your child is ripped from life is eternal.

How dare we forget our mission. How dare we.

Never forget.

Written by Reanna’s mom Tracy.

My Family has been devastated by an eating disorder in the worst way possible. On Nov 15, 2010, my Daughter lost her life to an eating disorder! In less than twenty-three months this disease came into our lives and took over my child. Physically, mentally emotionally and in every aspect that you can imagine! Due to misdiagnoses by her pediatrician, lack of education and no coverage for her condition by medical insurance we were alone in the very short battle!

This is Reanna Yvette’s Story

In early 2009, my daughter came home from school and told me she was a Vegetarian. She was fifteen and a half years old. She was a loving, caring, giving child. She always wanted to make people smile; she had a strong love for life. She was an artist and loved to draw pictures of animation. She weighed 140lbs and was healthy. In less than two months she went from Vegetarian to barely eating anything except lettuce. Now she was down to 105lbs. The change in physical appearance and mental state were now very drastic and noticeable to everyone who knew her. She became very defensive about everything! I took her to her pediatrician Dr. Mohadeem, who had been her pediatrician for the past two years; with hopes that this would be where we could get help for what I knew was beginning to be a serious problem. Unfortunately I was mistaken, during the examination I expressed my concerns regarding Reanna’s recent weight loss issue and eating issues. I was point blank told by Dr. Mohadeem in the prescreens of my daughter that “She was the perfect weight for her height and that she was just going through NORMAL adolescent changes as for the not eating,” Her body was changing”! We left and now Reanna was truly convinced this is not a problem! See what the doctor said!  This just gave my daughter and this disease ammunition, because in her mind if a doctor said she was okay, she was okay.

Now six months into this nightmare, so much about Reanna has changed. Her demeanor is now defensive, mean, dark and aggressive! Her art work depicts anger, pain and death! She became a different person physically and mentally. Her eating habits were worse! She will no longer eat in front of anyone; she is going through stages with food and having peculiar habits with food. To have a bowl of cereal became a ritual, she would crush the cereal up, pour the milk and let it sit for 20mins, then crush it up again pour a little milk then repeat it again! A simple apple would be cut up into tiny bite size pieces and take several hours to now eat. She now wanted fat free everything. If it wasn’t fat free she would immediately be agitated, she would scream, be very mad and accused me of doing it on purpose, setting the whole house in an uproar. She was territorial in the kitchen, she didn’t want anyone in the kitchen cooking, cleaning, organizing or putting anything away. She is now possessive with her food, not letting anyone eat or drink anything of hers. She was methodical in placing food in the refrigerator, she would get annoyed if things were misplaced or used by someone else. Her liking of the sugar substitute Splenda has now become an obsession; Reanna used it on and in everything! Walking became an everyday exercise, miles and hours a day. Anytime her weight, obsessions or activities were mentioned she became more defensive and combative! Her bathroom habits were changing also, she would be in there for hours. When I asked her about it I was always told, “I don’t feel good!”

August of 2009, she developed kidney stones most likely due to her diet and lack of water. She no longer was having a menstrual cycle either.  With her health issues not getting better she was ill for quite a while. September she had an incident at school; she tripped on a peach and fell on her right knee and shattered it. Tore her ligaments and maniscups and fractured her knee cap. She was placed in a full cast up to her hip. I am not a doctor by degree but I now was very aware of the fact that her immune system was not functioning normally. Her bones were becoming weak from lack of nourishment. Her hair was becoming thin and her skin looked bit jaundice. All the while the doctors ignored my pleas and referred her to orthopedic specialist! That’s what they felt she needed the most at this stage. Three weeks of wearing her cast she wanted her cast cut off. With the help of her friends they removed it and now she could return to her bathroom habits. She would not let anyone see her naked or partially clothed. She refused to take her medication or continue with any medical care for her knee. Along with everything else she was going through, she dealt with the pain. I believed for a moment we were on a path for healing, as her menstrual cycle returned. Seems small now, but it was a major breakthrough I thought.

November 2009 we relocated to Arkansas, her health was continuing to fail. She had multiple emergency room visits for sinus infections, continuous pain in her knee and her diet now consisted mainly of bananas. To a new staff of doctors six states away from where this struggle had began, once again sided with my now frail daughter, I was told by the doctor that her new diet was “OKAY” and I will never forget those haunting words that followed ” AT LEAST SHE IS EATING”! I was so angry and everything now that I was seeing was a sign that she has a problem and no medical doctor was listening to our cries for help. So back to the banana diet it was, frying them, boiling them, baking them and any other combination with Splenda she could imagine.

February 2010, we moved back to California. We noticed that she got much enjoyment out of cooking for other people. Looking back now her Sister Kamber believes, It was her way to be around food but not having to eat it, this allowed attention to be drawn away from the fact she herself was not eating. We as a family would try to get through to her, pleading with her to eat! She had pulled away from her longtime friends and started to pull away from us – her family.  We had to tread lightly as things could take a turn for the worse depending on her mood. At times she would be receptive to our pleas and try to fight the disease. She would have a couple of good days and then the disease would win. I discovered that she now was binging and purging to satisfy our pleas to eat. She increased her time in the bathroom; we could hear her in the shower vomiting up her food intake. I was proactive and limited her time in the shower and how many she could take. I thought this would help it stop! All this did was cause more conflict in my home. Reanna was only eating to make us happy. The binging was progressively getting worse.

July 2010, Reanna went to visit her Aunt Teressa in Indio, Ca. Teressa was observing her and noticed that she was resting and in sweatpants all the time and sleeping. It’s the desert and it usually is in the 120 degree plus range, so this along with her physical appearance alarmed her. She confronted Reanna and Reanna started to fight her. She was no match for her aunt! My sister got her to finally admit she had a problem and Reanna told her she wanted and needed help. Teressa called me and insisted that we do something now or Reanna was going to DIE. I agreed and my sister went into action. She started calling hospitals the first one was Loma Linda Childers Hospital, it is supposed to be one of the best children’s hospital in the United States. She spoke with a person named Patty and Patty informed her that they did not take their type of medical insurance which was Medi Cal, there was no way they could have her on a walk in basis and be admitted with that type of condition. She did ask if Reanna was cutting herself, if she possibly was they could admit her for that and that would be covered. Out of desperation I thought about that for a minute! But knew that would be a quick fix to a problem that was deeply seeded already. Patty was kind enough to give Teressa a few other numbers of places for possibly help. She called multiple places and they would forward her to another facility, no one accepted Medi Cal. No hospital or treatment centers would help!  Teressa was disgusted to find out that unless we could afford to pay for treatment privately that we were basically on our own AGAIN! The treatment centers were too expensive the lowest price my sister was quoted was $799.00 A DAY! I realized at that moment that if I was wealthy I could possibly save my daughter! What a horrible thought to know! I am not rich and my beautiful daughter was fighting this on her own. How pathetic I felt! If I had a better job with better benefits we possibly could fight this.

August 2010, I went back to school to get a better job. I went to Truck Driving School. I knew that if I put all my efforts towards this I could get her the insurance she needed to fight this disease. In early September 2010 I got a job offer. This meant I needed to make drastic changes. Being a single mother I sent my daughters to live with their older sister in Las Vegas, NV. I would be employed by Night Trucking with an awesome insurance package. Unfortunately this meant I had to leave my daughter when she needed me most! I knew that this was going to be the solution to our problems. I was gone for seven weeks straight. I called every day and every night we texted often. My daughters would give me updates regarding Reanna’s condition, and they were not good. She was increasing her binging, purging and depression was more severe. No one could get her to stop, not even me.

November 7th 2010, I got to return to Las Vegas for ten hours. In those ten hours Reanna did not leave my side. I noticed her breath had a horrible unusual smell. It was not the pleasant smell of a healthy person. Our plan was for Reanna to be able to get the medical help she needed and then she would get better and be able to travel on the road with me. This was the relief she, we had been waiting for. She was very positive about it! When I left her the next morning she would not let me go! She hugged me like this was the last time she would ever see me. I never dreamed or could imagine this was the last time I would be holding my daughter.

November 13th, Reanna’s sister Gift called me and said that Reanna was not good and that she called an ambulance for her sister. Reanna was doubled over and complaining of stomach pains and having trouble with her breathing. At this point I’m trying to figure out how to get to her. I was on the road in Central California. The hospital called me and told me they needed permission to give her treatment. I agreed. They recommended that I get home as fast as possible. I had to have family make arrangements to pick me up and drive me to Nevada. On the drive all I could think about is God let me get there before something happens! It took me nine hours to get to my baby. When I got there she was in so much pain, she couldn’t sit still. They had her dosed up on morphine. I told her “Mommy is here and I’m not leaving. She replied “you promise”.  Reanna was in so much pain and it was not being controlled by the morphine any longer. Tests had not been completed and they had no idea yet what exactly was going on. To manage her pain they put her on a ventilator and put her into a medically induced coma. In the middle of the night she came out of the coma and tried to pull the respirator out of her throat. They had to physically restrain her and tie her hands to the bed. They put her back into the coma and I never left her bedside and watched her twitch all through the night. In the morning they were planning to do an upper gastrointestinal endoscope procedure. That plan failed when Reanna’s body started crashing. Her blood pressure was dropping, she had a high fever, she wasn’t responding to any treatments. She now had to have emergency surgery to see what was going on with her. The doctors took me aside and told me to pray, they didn’t think she would make it ten minutes on the surgery table. I kissed her goodbye and told her I would see her when she was done. By this time I started calling family and friends, people were driving two hundred and fifty miles to be with her. My daughters were distraught and in a daze, not believing that this was happening. Four hours pass and Reanna was still fighting for her life. The doctors were amazed that she made it through surgery. They couldn’t believe what they pulled out of her stomach, unprocessed food from the last week. Her stomach forgot how to process food, her bowels perforated and she went septic. I was informed that she wasn’t out of the woods by any means and the next week would be the hardest. I was told to continue to pray. Our family was now by her bedside she was still in a coma recovering from surgery. Monitors started going off, Reanna’s blood pressure started dropping and her heart stopped. They called code blue and nurses and doctors started working on her. We witnessed them pounding on her chest trying to resuscitate her. They got no response; they shocked her heart four times and finally brought her back. It was the most devastating ten minutes of my life! They moved us from Reanna’s room to a conference room and explained to us that she was no longer breathing on her own; the machines were now keeping her alive. Every one of Reanna’s major organs were shutting down. They said they could keep bringing her back, but we as a family had to make a choice as to how much we were going to put her little body through. I sent my daughters home at this point. I watched them pump everything they had to offer to help make Reanna comfortable at this point.

November 15th at 6:15 am Reanna went into Cardiac arrest again. I instructed them to stop! She passed away at 6:30am. I can’t put into words what I felt or tell you exactly what I was thinking or doing at that moment. My world stopped!

After my daughter passed her best friend Linda found her journal in her room. The last thing she had written in there was ” Where is the help I was promised! Not here, not my fault I want help!” A couple of days later while going through the only things left of my daughter I found her Bucket List. Yes, my seventeen year old daughter had a Bucket List. Her number one was- To save a life.

This is now my mission. I am here today to ask that Congress will hear our cries and pleas. Help us save the next generations from this silent disease that does not discriminate against race, size or sex. We train our physicians and medical staffs to recognize obesity because it’s a disease you can see. We inform our communities to eat healthier and to exercise to help maintain idea weight. Why do we NOT train our doctors on eating disorders like anorexia or bulimia? Why do we NOT train our pediatricians to recognize this disorder?  We do we NOT actively educate the public on this disorder. Why are we NOT fighting medical insurance to cover and assist with this disease!  As in Reanna’s story being skinny is NOT ideal for her body size and height. We assume a skinny person is a healthy person, never knowing that for some it may be an eating disorder silently killing them like, Emily Rose, Nicole, Chelsey, Elle and Reanna Yvette.

The heart. A simple heart symbol. Now used in so many different contexts. Everything from jewelry commercials, to Valentine’s Day commercials to the “heart hands” image more popular with the younger generation.

And yet, the heart and its image are also the center, the very core of our physical and spiritual existence. In a metaphorical sense, it represents the place where our emotions and feelings are kept and nurtured. It is affection. It is compassion. It is passion. It is feeling. It is … love. And yet, it is so much more complex.

Some persons steeped in the study of spirituality believe the heart also carries impulses of intellect, of energy, of reason as well as impressions of our soul. We equate the heart with courage, resiliency and strength. But, when we are gripped with an unspeakable tragedy, we express that anguish, that overwhelming pain as “breaking our heart.”

Our heart is us. As long as our heart beats, we have life. We have hope.

Recently, a friend posted the above picture as her February Facebook cover photo. I believe it was a representation of her past disdain for that quintessential “Hallmark Holiday,” Valentine’s Day.

And yet, for those of us who have experienced first-hand, the on-going battle with eating disorders, this image represents nothing less than the unconditional love we have for our beloved children who suffer and die from this disease, and the harsh reminder of the grim reality of what this disease can do to our loved ones. The image is dark. It is raw.

The image of “The Purger,” dressed in funereal black, her dark hair pulled up on her head. A darkness surrounding her eyes. There is almost a “casualness” surrounding her image. One hand set against a wall, the other hand on her hip as if she were saying, “Let’s just get this over with.” There is certainly no joy represented in this image. One can also sense sorrow even anguish manifest in the Purger. Her specter like appearance, hovering between darkness and light, life and death.

And then, the hearts. Hearts as the manifestation of life. The hearts flowing out of her mouth. Almost as if she were purging away love. Almost as if she were purging away life itself. The Purger, lonely and alone. The Purger, left to her own fate. The blackness representing the inevitable darkness of despair and the abyss which awaits her.

Or, does it?

What if instead of purging away her life, what if she was beginning to reabsorb life? Can we definitively say that she is purging away those hearts, that love, and life itself? If we look at the image through a different lens, could she in fact be breathing in those hearts?

Let’s look at the pattern of the hearts and reexamine what we see.

The larger sized hearts at the bottom. A more discernible pattern developing in the shape, size and interaction of the hearts as they get closer to her mouth. The red color of the hearts more vivid toward the bottom of the image and yet, as they approach her mouth they shrink in size and start to lose the vivid redness … as if they are preparing to be absorbed into her. Becoming one with her again. Going home.

How do we know that in that moment of time just before this image, she wasn’t on her knees and now she is rising with new strength she is finding within her? Is her extended hand pressed up against a wall? Or is it in a position of telling the world to wait … that she has this, that she is regaining her life. She is regaining love.

The two circles above her. Are those the tearful eyes of the eating disorder monster fading into oblivion as it realizes that it has failed to claim another victim?

Look at the sandstone pattern in the image. It is surrounding the Purger. It is in the background. It is behind her, and yes it appears to be encircling her. But … it is not immediately in front of her. Directly in front of her, in front of her face and body, there is light. There is illumination. Almost as if the hearts, as they are being drawn back into her are casting a light of illumination. A light of love. A light of life.

Look again. At first glance, what appears to be an image of despair, of purging away life is anything but. This is not an image of despair! This is an image of reclaiming life. Of reclaiming love. In all of its harshness. In all of its beauty.

The subject lady, The Purger? No.

She is The Warrior. She has faced the greatest obstacle a person can encounter. She is regaining her heart. She is regaining her soul. She is regaining her Life. She is the Warrior.

She is resolute. She knows a strength that most people can never understand nor approach.  She is defined by her resilience. She is the very best of us.

She is the Warrior.

The term “Big Pharma” is more often than not, a pejorative term used to describe the conglomeration consisting of the largest pharmaceutical companies. The annual earnings from these companies’ number literally in the billions of dollars.

Facts, fiction, myths and legends surround Big Pharma. Some believe that Big Pharma is the devil incarnate focused only on their self-interest by creating customers and not cures. And yet others believe that Big Pharma’s existence has significantly eased the pain and suffering of millions of people and have saved an untold number of lives. Regardless, one thing is certain. Big Pharma possesses billions of dollars in earnings and profits which when used in a collaborative, wise manner has the potential and ability to attain breakthroughs in the identification and treatment of diseases.

Who or What is Big Pharma?

Like the barker at a sporting event repeatedly shouting out “Get your programs! Get your programs here! You don’t know the players without a program!” So too, we must identify the players in “ Big Pharma.”

In general, “Big Pharma” refers to the largest pharmaceutical companies in the world. The ten biggest pharma companies in terms of 2018 revenue production from their pharmaceutical segments alone (not including include sales from consumer health, animal health or crop science) were:

1. Pfizer – $53.7 Billion
2. Roche – $45.6 Billion
3. Johnson & Johnson – $40.7 Billion
4. Sanofi – $39.3 Billion
5. Merck & Company – $37.7 Billion
6. Novartis – $34.9 Billion
7. Abbvie – $32.8 Billion
8. Amgen – $23.7 Billion
9. Glaxo/Smith/Kline – $23 Billion
10. Bristol-Meyers Squib – $22.6 Billion

In 2018, the total revenue production from pharmaceutical sales alone for these ten companies was $354 Billion. That is $354,000,000,000!

Big Pharma as the Devil on the Shoulder

With stratospheric earnings, come stratospheric power and influence. Deep financial pockets open the door to every state house in the nation as well as Congress. Between 1998 and 2014, pharmaceutical companies were reported to have spent approximately $2.9 Billion on lobbying expenses in our Nation’s Capital alone. Further in 2013 and 2014 alone, these companies reportedly spent $15 billion in campaign contributions.

Spending on marketing and advertising is also prodigious. In 2018, the pharmaceutical industry purportedly spent $6.4 Billion on advertising. One watchdog journal reported that drug companies spend 19 times more on marketing than they do on research and development. Another investigative journal reported that every $1.00 spent on a commercial, billboard, radio, or print ad results in over $4.00 in retail sales. For example, Boehringer Ingelheim spent $464 million in advertising for Pradaxa, its blood thinner, in 2011. In 2011, sales of Pradaxa surpassed $1 billion

Reportedly, American television viewers are subjected to as many as sixteen (16) hours of prescription drug advertising every year.

The television character Alan Shore from the hit series, Boston Legal, summed up the pharmaceutical industry as such:

Alan Shore on Big Pharma

Conspiracy theories abound about the evils being perpetrated by Big Pharma. Some people postulate that there are all-natural cures for serious illnesses including cancer, herpes, arthritis, AIDS, various phobias, depression, obesity, diabetes and other diseases. They opine that these cures are all being deliberately hidden and suppressed from the public by the Food and Drug Administration, the Federal Trade Commission, and the major food and drug companies.

A common claim among proponents of the conspiracy theory is that pharmaceutical companies suppress negative research about their drugs by financially pressuring researchers and journals.

Legal claims, including Medicare and Medicaid fraud, improper off-label promotion and inadequate manufacturing practices, have been successfully prosecuted against the pharmaceutical industry by the Department of Justice. In 2012, GlaxoSmithKline pled guilty to criminal charges of willfully promoting its leading antidepressant drugs, like Paxil and Wellbutrin, to consumers under the age of 18. Neither drug had been approved by the US Food and Drug Administration to be used by minors. As a result, the Department of Justice fined GlaxoSmithKline $3 billion.

In 2012, Johnson & Johnson was hit with a $2.2 billion fine for promoting off-label use of its drugs [i.e., the company was found guilty of encouraging consumers to use the drugs for purposes not condoned by the FDA]. In 2009, Pfizer, paid $2.3 billion for illegally marketing its Bextra drug. The New York Times noted that the fine – a “record sum” at the time – accounted for less than three weeks of Pfizer’s sales.

In October 2019,  a jury in Philadelphia assessed an $8 billion verdict against Janssen Pharmaceuticals, a Johnson & Johnson subsidiary over its marketing of the anti-psychotic drug Risperdal. The plaintiff argued that the health care giant downplayed risks that the drug could lead to breast growth in boys.

In short, reliance on pharmacotherapy bears known and obvious risks for patients and medical practitioners.

Big Pharma as the Angel on the Shoulder

In 2012, Boston Children’s Hospital released a statement acknowledging a bold, new frontier with Big Pharma. This statement recognized that partnerships had been created, “… which demonstrated Big Pharma’s recognition that academic medical centers hold many important cards in clinical research: scientific expertise, animal models of disease, patient samples and phenotypic data.”

This statement also reported, “Increasingly, these partnerships involve academic and company researchers developing joint grant proposals in targeted areas, selected (by joint agreement) for company sponsorship. Some, like the Immune Disease Institute’s $25M arrangement with GlaxoSmithKline are specific to one academic institution; others, like Pfizer’s Center for Therapeutic program, provide the same resources under the same deal structure to multiple institutions. Each new deal advances the interaction and understanding between academia and pharma around the common goal of finding new compounds and bringing them to clinic.”

Prior to the 2000s, the autism community had hoped for drugs that target the disorder’s hallmark social and communicative deficits. Similar to eating disorders, the U.S. Food and Drug Administration had only approved two compounds to treat autism. In the case of autism, it was the antipsychotics risperidone and aripiprazole which were utilized to alleviate secondary symptoms, such as irritability and aggression.

Like eating disorders, there is no known cure for autism. However, research is increasingly indicating that earlier therapy in the form of social and communication coaching can have a disproportionately beneficial effect.

Enter Big Pharma. (Or, those who solely embrace the devil on the shoulder would say that Big Pharma saw an opportunity to increase their profit margins by investing in autism research).

In 2011 industry giant Pfizer  launched an “Autism Research Unit,”, the first in Big Pharma dedicated to autism. The autism group is part of Pfizer’s neuroscience unit, which also investigates schizophrenia and Alzheimer’s disease.

Beginning in 2012, a $38.7 million research project spearheaded by Autism Speaks, King’s College London and Swiss pharmaceutical giant Roche concluded in March 2018. This project, called EU-AIMS, focused on developing a framework for drug discovery. Its leaders sought to validate biomarkers for autism and to work with regulators on establishing the best ways to run clinical trials. The researchers also made advances in understanding how brain development, anatomy and function relate to autism features. Other participating companies included Eli Lilly, Servier, Janssen Pharmaceuticals, Pfizer and Vifor Pharma.

In 2018, a new international research collaboration was formalized and funded. With more than 113 million euros (about $132 million) in funding, it is the biggest project to date in autism research. Launched in June, the Autism Innovative Medicine Studies-2-Trials,  or AIMS-2-Trials brought together 48 partners from 14 nations, including academic institutions, pharmaceutical giants and charities. One of its aims was to establish a clinical-trial network of more than 15 centers across the European Union.

Declan Murphy, a professor of psychiatry and brain maturation at King’s College London and the academic lead on the project stated, “Because autism may take vastly different forms, the ultimate goal is to tailor therapies to an individual’s biological profile.”

The AIMS-2 researchers also plan to look for risk factors that render autistic people particularly susceptible to other conditions, such as anxiety and epilepsy. Professor Murphy also stated, “These co-occurring conditions add a “significant burden” on top of autism. The plan is to explore the connection between autism and these conditions, quantify their impact and investigate ways to treat and prevent them.”

In March 2019, a study was released indicating a new autism drug had successfully improved sufferers’ social skills in both adults and children, scientists revealed.

Experts are hailing the outcomes of the drug trials despite the fact that so far, licensed medication for Autism Spectrum Disorder (ASD) does not address core symptoms, such as problems with social communication and repetitive behaviors. But, that is one of the many goals toward which this collaboration is working.

Finally, in September 2019 President Donald Trump  signed into law, the Autism Collaboration, Accountability, Research, Education and Support Act. This Act allocates $1.8 billion in funding over the next five years to help people with autism  spectrum disorder and their families.

So, what does one get for that investment in autism? Generally accepted treatment standards.

Consensus Guidelines in the UK

Practice Guidelines in India

Guidelines for Children with ASD

As for eating disorders?

Big Pharma and Eating Disorders

In Texas, we have a somewhat colorful expression for “fait accompli,” that is, “the horse done left the barn.” With regard to Big Pharma and the treatment of eating disorders, not only has “the horse done left the barn,” but it galloped down the lane, mated with the neighbor’s prized brood mare and is currently eating apples off the trees in Aunt Bessie’s orchard three counties over.

The United States Food and Drug Administration has approved only two drugs to treat eating disorders.  Vyvanse is the first FDA-approved drug to treat binge eating disorder in adults. It’s also used to treat ADHD. It is not clear how the drug works in binge eating, but it is thought to control the impulsive behavior that can lead to bingeing. In studies, patients who took the medicine had fewer episodes of binge eating.

The FDA also approved the use of Prozac (Fluoxetine) for Bulimia Nervosa.

No medication has been FDA-approved for the treatment of Anorexia Nervosa. Despite this, clinical doctors have been known to prescribe an aggressive medication regiment to treat eating disorders. Remeron, which has not even been studied in trials with Anorexia Nervosa, is nonetheless often used in patients with Anorexia Nervosa (especially if there is co-occurring depression or anxiety) due to its ability to help with sleep and increase appetite, thereby potentially increasing weight gain.

In order to treat the symptoms of eating disorders and the co-current conditions, doctors often prescribe a plethora of drugs not specifically approved to treat the disease. This is called “off-label” prescribing.

The following drugs have been utilized to treat eating disorders and its many co-occurring conditions:

1. Fluvoxamine;
2. Ambien;
3. Lithium;
4. Potassium;
5. Vayarin;
6. Fluoxetine HCL;
7. Buspirone HCL;
8. Gabapentin;
9. Mirtazapine;
10. Latuda;
11. Metronidazole;
12. Vitamin B-1;
13. Divalproex;
14. Doxepin;
15. Zolpidem;
16. Mag Oxide;
17. Cymbalta;
18. Hydroxyzine Pamoate;
19. Trazadone;
20. Mynocycline;
21. Baclofen;
22. Topiramate;
23. Thiamine HCL;
24. Ondansetron ODT;
25. Prazosin;
26. Sulfamethoxazole;
27. Citracal Plus D3;
28. Omeprazole;
29. Spironolactone;
30. Ferrous Gluc;
31. Venlafaxine;
32. Lamotrigine;
33. Ranitidine;
34. Trifluoperazine;
35. Olanzapine;
36. Vancomycin;
37. Oxcarbazepin;
38. Risperidone;
39. Naltrexone;
40. Neurontin;
41. Vistaril;
42. Trileptal;
43. Klonopin

Some doctors who treat eating disorders have begun to utilize ketamine to treat certain aspects of eating disorder symptoms. They swear to its effectiveness and report they have seen vast improvement in patients using ketamine as part of their therapy regiment.

The cold, harsh reality is that Big Pharma is already firmly embedded in the eating disorder industry and is not going away. And so, we are left with the issue of how do we handle this dilemma going forward. Do we acknowledge the reality that Big Pharma has a permanent presence in the industry and find meaningful ways of collaborating? Or do we figuratively tightly shut our eyes, place our index fingers in our ears, loudly stamp our feet, hold our breath until our faces turn blue and hope Big Pharma goes away?

To date, in the realm of the treatment of eating disorders, research scientists, university based doctors and professionals historically have not only not embraced the reality of pharmacotherapy, but have routinely shunned its presence.

With hundreds of billions of dollars in annual sales, Big Pharma has the ability to partner with doctors and organizations and pour their formidable financial resources into whatever cause, disease treatment or prevention it chooses. Or, through being shunned and rejected by an industry, diseases remain understudied and research into them is undertaken in a piecemeal fashion with little or no collaboration. And all the while, our loved ones continue to suffer.

In 2018, of that $354 billion in pharma sales, how much was spent on lobbying for eating disorder research based bills or bills that would establish centers of excellence so that research could be conducted in a collaborative manner? ZERO. NADA. NONE.

It is incumbent upon the industry to recognize that reality and find proactive, productive ways to collaborate and make use of the tremendous financial resources available to Big Pharma.

For far too long, the eating disorder industry has recognized the “evil” of Big Pharma and shunned the “good” of Big Pharma. The eating disorder community pushes legislative bills that do not address any funding for research and which stand very little chance of passing. Our research scientists are operating in silos believing that very little funding exists for their studies. With that mindset of isolationism and turning away legitimate sources of funding, our loved ones continue to pay the price for that lack of vision.

And whether it is one person dies every 62 minutes, or one person who dies every 167 minutes, that is one person too many.

“The psychological fact of suggestion is the fact that if statements are made again and again in a confident manner, without argument or proof, then their hearers will tend to believe them quite independently of their soundness and of the presence  or absence of evidence for their truth. More particularly will the listeners tend to accept the suggestions of a speaker if they have what we may call ‘prestige’.”

                   Robert H. Thouless, British Psychologist

“Increasingly, we become so secure in our bubbles that we accept only information, whether true or not, that fits our opinions, instead of basing our opinions on the evidence that is out there.”

                        President Barack Obama

“Illusory truth effect” is a mechanism by which one comes to believe something is true when it is not. It can be a powerful mechanism. A mechanism many people embrace. In fact, not only do many people embrace it, but they defend it as true. At times, the thought that a person’s belief may not be true is so inconceivable and unleashes such unfathomable personal ramifications that many people will not even look for balance nor  objectivity and when confronted with the truth, they readily dismiss it.

Similarly, “Confirmation Bias” is the tendency to search for, interpret, favor, and recall information in a way that affirms one’s prior beliefs or hypotheses. It is a type of cognitive bias and a systematic error of inductive reasoning. People display this bias when they gather or remember information selectively, or when they interpret it in a biased manner. The effect is stronger regarding desired outcomes, emotionally charged issues or deeply held beliefs.

When one combines illusory truth effect with confirmation bias, blatantly incorrect and potentially damaging information may be regarded as an absolute truth no matter what reason, logic and facts exist to contradict that faulty misinformation. And sometimes with tragic results.

In the realm of eating disorders, one of the biggest, if not “the” biggest perceived “truth” may be anything but … and this should shake the eating disorder industry and community to their very core.

Once Every Sixty-Two Minutes, someone dies as a direct result of an eating disorder.

Like most people who have been impacted by eating disorders or who are involved in the eating disorder industry and community, I embraced this statistic as an absolute truth. Because it had been repeated so many times by persons perceived as authoritative, I presumed that it must be true. I used this statistic in TED talks. I impactfully utilized this statistic in presentations to adolescents, caregivers and parents.

This statistic, perhaps more than any other, defines the deadly nature of eating disorders. By its very nature, it frightens us. It sobers us. It brings home the pain and suffering endured by loved ones. It forces us to grimly acknowledge the mortality rate of this disease. Doctors, professionals, advocates, and counselors all, hold on to and quote this horrendous statistic as gospel chapter and verse. Organizations have quoted this statistic before Congress and other legislative and administrative agencies.

We use this statistic to bolster representations that Eating Disorders have the highest mortality rate amongst all mental illnesses save opioid addiction.

And yet?

After conducting extensive research, I could not locate even ONE research paper or analytic study indicating that this statistic is accurate. Even an originating paper or study where it is cited for the first time could not be located. But, we are not left without any probabilities.

In 2011, two studies were published back-to-back  in the Archives of General Psychiatry. The first study was entitled, “Prevalence and Correlates of Eating Disorders in Adolescents. Results from the national comorbidity survey replication adolescent supplement.” It was authored by Sonja A. Swanson, ScM, Dr. Scott J. Crow, MD and Dr. Kathleen R. Merikangas, PhD. It is cited at Arch Gen Psychiatry, 2011; 68(7): 714-723. For simplicity, we will refer to this study as the “Swanson/Crow Study.” A copy is attached here:

Swanson/Crow Study

The second study was entitled, “Mortality rates in patients with anorexia nervosa and other eating disorders. A meta-analysis of 36 studies.” It was authored by Jon Arcelus, PhD, Alex J. Mitchell, MRC Psych, Ms. Jackie Wales, BA, and ; Soren Nielsen, MD. It is cited at Arch Gen Psychiatry, 2011; 68(7): 724-731. For simplicity, we will refer to this study as the “Arcelus Study.” A copy is attached here:

Arcelus Study

I could not locate any research papers prior to 2011 in which the “Once every 62 minutes” statistic was utilized. It appears this statistic has its genesis in the 2011 Studies mentioned above. Sadly, the “Once every 62 minutes” statistic does not appear to be based upon an accurate analysis of these Studies. In fact, this 62 minute statistic appears to be merely a “guestimate,” albeit a good faith guestimate.

So, to determine whether this statistic is legitimate, we must turn to both 2011 studies.

The Swanson/Crow Study

The Swanson/Crow study was limited to adolescents suffering from eating disorders. It was based on face to face interviews with 10,123 adolescents aged 13 – 18. It focused on prevalence of eating disorders in adolescents.

Its major finding indicated that the full spectrum of eating disorders and disordered eating was likely to be considerably higher than previously estimated, a possibility that may have major public health implications. Whereas the Swanson/Crow Study touched upon suicide ideations, plans and attempts, it did not delve into this factor and did not include mortality estimations or statistics.

The Arcelus Study

On the other hand, the Arcelus Study focused on mortality rates. The Arcelus study is an analysis of data collected from 36 different studies published between 1966 and 2010. After mortality rates were adjusted for sample size, Arcelus researchers calculated the following:

1. 1 deaths per 1,000 people with anorexia per year. Anorexia increased the death risk 5.86 fold.
2. 7 deaths per 1,000 people with bulimia per year. Bulimia increased the death risk 1.93 fold.
3. 3 deaths per 1,000 people with EDNOS per year. EDNOS increased death risk 1.92 fold.

So, if the Arcelus statistics are considered accurate, the mortality rate would equal 10.1 deaths per 1000 individuals in the United States.

Maths is hard.

This is where the dreaded math aspect comes into play. And so, we will attempt to simplify and clarify complex equations as much as possible.

In 2011, the population of the United States was approximately 311,600,000 people. Divided by 1000 individuals [the Arcelus research study constant], this results in 311,600 people as our control group. Of these 311,600 people, 1.01% people [10.1 deaths per 1000] will suffer and perish from eating disorders annually … or 3,147.16 fatalities per year.

Next, we compute the mortality rate per minute. To do this, we know the following:

For an average year in the complete leap cycle of the modern Gregorian calendar (365.2425 days) there would be 525,949.2 minutes (60 minutes per hour, multiplied by 24 hours per day, multiplied by 365 days per year).

If the current belief of one death every 62 minutes is to be believed, we would take the average of 525,949.2 minutes per year divided by 62 minutes which then equals 8,483 fatalities per annum.

However, if we go by the more generally accepted, accurate and respected Arcelus statistics, this number would be 3,147.16 deaths per year… not 8,483!

Therefore, if the math, logic and  underlying assumptions in the Arcelus Study are correct,  a more accurate statistic would be one death as a direct result of eating disorders every 167.1 minutes. [525,949.2 minutes per annum divided by 3,147.16 = 167.1 deaths per annum]

One death every 167 minutes … as compared to … One death every 62 minutes.

Make no mistake, the mortality rate is still horrendous. And yet, how could we be so wrong? And, why has this statistic been unquestionably accepted and not more thoroughly vetted, researched and explored?

Other Variables

Naturally, other variables exist which further cast doubt upon the accuracy of the one death every 62 minutes statistic. For example, eating disorders are rarely listed as the primary cause of death on death certificates. [Personal experience with that one.] Heart failure or multiple organ failure are more commonly listed as the cause of death. Co-occurring addictions are more frequently cited as causes of death. Thousands of deaths which could be related to eating disorders do not occur in treatment centers or hospitals, but instead in the quiet solitude of one’s home. [Something for Kelly has experience with that one.] The lack of training of our healthcare professionals to identify and treat eating disorders. The limited number of autopsies performed. Inexperienced coroners incorrectly attributing deaths  to eating disorders.

These factors and many others, which all speak to variables which are not constant and relatively unknown when taken into account, cast additional doubt upon the previously believed statistic of “once every sixty-two minutes.”

No valid research paper or study could be located which establishes, let alone verifies that the one person every 62 minutes statistic is accurate. To the contrary.

In short, the once every 62 minute statistic is as unsubstantiated as other medical myths such as: we only use ten percent (10%) of our brains; you need to stay awake immediately after sustaining a concussion; sitting too close to a television ruins your eyesight; fingernails and hair continue to grow after death; ulcers are caused by stress.

But why?

People have asked why I would expose the myth of 62 minutes. Why not just leave well enough alone? After all, my own daughter was one of those souls taken by this disease. Why?

The answer is both complex and simple.

First, there is an undeniable crisis within and about Eating Disorders. Eating Disorders are the unwanted, unloved “ugly stepchild” of mental illnesses. Eating Disorders receive very little federal funding for research especially when compared to other mental illnesses.

The eating disorder community (organizations, foundations, advocates, and activists) is fractured, dysfunctional and unable or unwilling to collaborate on a centralized, powerful message.

The eating disorder industry (research scientists, professionals and medical doctors and clinicians) is unable or unwilling to collaborate to develop generally accepted standards of care which are both effective and reliable and which would save many lives.

A cacophony of banal noise is coming from a miniscule, militant sect of social engineering activists who seek to turn this deadly genetic, biological and medical disease into a social injustice classroom experiment.

The families who bear the brunt of this dysfunctionality, who live with the pain and anguish of their loved ones suffering and dying from eating disorders are entitled to receive and rely upon properly vetted, accurate information.

To obtain research grants and funding that eating disorder patients and their families require, we will be called upon to testify truthfully and openly in state houses, before Congress and before administrative agencies. “Guestimated” statistics do not lend credibility to the verifiable evidence which exists, that is, eating disorders are deadly genetic, biological and medical diseases.

To finally obtain necessary research funding, funding that will lead to intelligent, fact-based and scientific breakthroughs in our understanding and treatment of this disease, we must demand accountability and accuracy from all … scientists, professors, doctors, clinicians and advocates.

“Once Every Sixty-Two Minutes” makes a very compelling sound bite. But, unlike our children who hang on to bed time fairy tales as exciting stories to give them peace and comfort, we do not have that luxury. We must make our case to strive forward with confidence, armed with fact based statistics in order to save many more lives.

We must say, “Good night and good-bye to Once Every Sixty-Two Minutes.” You served us as well as you could. But now, you must stand aside for clarity, truth and accuracy.

There is a perfection in the juxtaposition of the simplicity … and the complexity of life. And yet, the vast majority of time, life itself gets in our way and prevents us from being in that space of wonder.

Even attempting to find that space of wonder can be daunting. So,  walk with me right now. The beach beckons and awaits us.

The laughter of revelers begins to fade as we slowly walk toward the beach. The raucous noise turns from individuals loudly laughing, to a quieter crowd noise, to a slight din, to quiet murmurs in the distance, to nothingness behind us. Only the slowly constant, almost symphonic music of waves lapping on the approaching shoreline awaits and is rising. Allow yourself to listen. Allow yourself to hear it.

Walk with me. We are going to embrace all of our senses.

It is nighttime. Away from any major city. And the night sky is that dark, inky black which only exists as civilization is left behind. Briefly look behind us. See the lights of the villas and the resort. Individual windows and torches aglow. Now, look up with me. Revel in the countless stars twinkling, shining so incredibly brightly. Pulsing dots of wonder, almost playful individual beacons of light to guide us.

The half-moon tonight is majestic. The night is so clear you can see craters and shadows on its surface. There is an aura around it. Illuminating all about you in a subtle glow. Even though the blackness of the ocean and the blackness of the sky combine to form a pallet of darkness stretching to infinity … there is no beginning nor end to either, the twinkling saviors above provide patterns of hope and light to us. We see the white caps of each wave sometimes lapping, sometimes colliding onto the beach. Our colors tonight are primarily ebony, white, silver and the darkest blue. Darkness and light. But, our journey is only starting. Stand with me here, on the beach, take my hand and trust in your other senses.

Close your eyes. It is ok. The light will always be there. It always is.

Now, breathe in deeply. You can smell the slight brine in the ocean air. Perhaps a faint smell of a Cuban cigar, its aroma carried over a significant distance by a stray wind current. If you keep your eyes closed, maybe you can detect a slight whiff of decay. But that too, is ok. For as surely as the ocean gives life, so too does it take it. Perhaps a nearby small crab or fish. But, we are ok. Life surrounds us.

The sights. The sounds. The smells. But, we are not done yet.  Please sit with me. The sand is soft beneath us.

The sand is whitish, light beige in color. Dig your toes into it. Feel the grains slide between your toes. Can you feel how some of the individual grains are coarse, and yet others are so smooth? Let the sand cover your toes. The coolness of the sand beneath the surface belying the slight heat of those grains of sand on the surface.

Now, dig your fingers into the sand. Feel the warmth on the surface, the coolness underneath. The soft nature of the sand as a collective substance, enveloping our fingers. As we lift our fingers, we feel the sand collectively sift through as it slowly empties to return to the place it previously occupied.

Embrace all of your senses. The sound of the waves. The light of the stars and moon above. The smell of the ocean. Revel and wonder.

Now, pick up some more sand and hold just a small portion in your hand. Set free nearly all of it until just a few grains are left. Until there is but one left. Feel with your fingers its unique qualities. It may be square in shape and coarse to the touch. It may also be round and smooth. That one grain of sand. Among the billions of grains of sand on our beach, there may be no other grain of sand just like it. It is unique. It is individual. It is also part of the collective nature of something far more majestic and grand. Hold that one grain of sand and know you are touching something as unique as yourself.

Now, please stand with me. Tilt your head up. Open or close your eyes, that is up to you. Maybe extend your arms a bit. And allow yourself to … feel. Feel the breeze against your cheeks. Feel the wind lifting each hair on your arms. Let the sound of the waves on the beach envelope you.

The past, present and future have all combined at this one perfect place in time … with you on this sacred ground. And now, allow yourself to remember. Allow yourself to whisper that one name. The name of that close friend. The name of that loving spouse. The name of a parent. The name of a beloved child. The name of a soul who you believe is no longer with you.

Whisper their name.

And know they are not gone. They exist in that one grain of sand. They exist in the twinkle of that far distant star. They exist in the glow of the moon illuminating all. They exist in the smell of the ocean air. They exist in the waves meeting the shore. They exist all around you.

They are alpha and omega. They certainly see us. They want to embolden us. They want us to thrive. They want us to live life to its fullest. They want us to know they are safe and happy. They want us to know that they are sending us messages to continue. Most of the time we cannot see, or experience or hear the message. And yet, when their message is received, it fills us with incredible strength and fortitude. They are here. They are with us.

Whisper their name. For me, it is “Morgan.”

Whisper their name as our senses are renewed and revitalized.

Whisper their name.

On December 18, 2019, just a few hours before the historic impeachment vote, the Fifth Circuit Court of Appeals in New Orleans, Louisiana issued a 98 page opinion affirming a lower court’s prior ruling that the “individual mandate” in the Affordable Care Act was unconstitutional. However, it also sent the case back to the lower court to determine whether all other aspects of the ACA should be allowed to stand or are they constitutionally infirm.

And so, the treatment of mental health care, the treatment of eating disorders and the ability to refer our loved ones to treatment facilities outside of their home state hang in the balance.

In this article, we will address (1). What is the individual mandate and why it is important; (2). Whether the rest of the ACA will be allowed to stand since the individual mandate has been determined to be unconstitutional, and; (3). What this ruling means to the mental health and eating disorder industries.

The Individual Mandate

When President Barack Obama signed the ACA into law on March 23, 2010, the ACA sought to “increase the number of Americans covered by health insurance and decrease the cost of health care” through several key reforms.

Some of those reforms implemented new consumer protections, aiming primarily to protect people with preexisting conditions. For example, the law prohibited insurers from refusing to cover preexisting conditions. 42 U.S.C. § 300gg-3. The “guaranteed-issue requirement” forbade insurers from turning customers away because of their health. See 42 U.S.C. §§ 300gg, 300gg-1. The “community-rating requirement” kept insurers from charging people more because of their preexisting health issues. 42 U.S.C. § 300gg-4.1.

Other reforms sought to lower the cost of health insurance through the use of the “individual mandate.” The individual mandate required individuals to “maintain health insurance coverage.” 26 U.S.C. § 5000A(a). If individuals did not maintain this coverage, they were required to make a payment to the IRS called a “shared responsibility payment.”

The individual mandate was designed to lower insurance premiums by broadening the insurance pool. See 42 U.S.C. § 18091(2)(J) (“By significantly increasing . . . the size of purchasing pools, . . . the [individual mandate] will significantly . . . lower health insurance premiums.”). When the young and healthy must buy insurance, the insurance pool faces less risk, which, at least in theory, leads to lower premiums for everyone. See 42 U.S.C. § 18091(2)(I) (positing that the individual mandate will “broaden the health insurance risk pool to include healthy individuals, which will lower health insurance premiums”).

The individual mandate thus served as a counterweight to the ACA’s protections for preexisting conditions, which pushed riskier, costlier individuals into the insurance pool. Under the protections for consumers with preexisting conditions, if there were no individual mandate, there arguably would be an “adverse selection” problem: “many individuals would,” in theory, “wait to purchase health insurance until they needed care.”

The individual mandate was challenged a few months after the ACA was implemented. This case went up to the Supreme Court. The Court, in Nat’l Fed’n of Indep. Bus. v. Sebelius (NFIB), 567 U.S. 519, 538 (2012) narrowly upheld the law’s individual mandate. The Court decided that the ACA’s individual mandate could be read as a tax on an individual’s decision not to purchase insurance, which was a constitutional exercise of Congress’ taxing powers under Article I of the U.S. Constitution. The Court favored this tax interpretation to save the provision from unconstitutionality.

Chief Justice Roberts reasoned that the individual mandate could be read in conjunction with the shared responsibility payment in order to save the individual mandate from unconstitutionality. Read together with the shared responsibility payment, the entire statutory provision could be read as a legitimate exercise of Congress’ taxing power.

Absent that interpretation, reading the individual mandate as a standalone command to purchase insurance would have rendered it unconstitutional. This reading could not have been justified under the Commerce Clause because it would have done more than “regulate commerce . . . among the several states.” U.S. Const. art. I, § 8, cl. 3. It would have compelled individuals to enter commerce in the first place.

The Court explained that the U.S. Constitution, “gave Congress the power to regulate commerce, not to compel it.” As Chief Justice Roberts observed, if the individual mandate were a proper use of the power to regulate interstate commerce, that power would “justify a mandatory purchase to solve almost any problem.” Id. at 553 (Roberts, C.J.). If Congress can compel the purchase of health insurance today, it can, for example, micromanage Americans’ day-to-day nutrition choices tomorrow. Id. (Roberts, C.J.); see also id. at 558 (Roberts, C.J.)

And so, for the time being, the ACA survived.

But then, in December 2017, as part of the Tax Cuts and Jobs Act, Congress set the “shared responsibility payment” amount—the amount a person must pay for failing to comply with the individual mandate—to the “lesser” of “zero percent” of an individual’s household income or “$0,” effective January 2019.

This effectively rendered the individual mandate unconstitutional because:

(1) NFIB rested the individual mandate’s constitutionality exclusively on reading the provision as a tax; and

(2) the 2017 amendment undermined any ability to characterize the individual mandate as a tax because the provision no longer generates revenue, a requirement for a tax.

Then, in February 2018, Republican State Officials from twenty (20) different states filed the case entitled Texas, et al v. United States, et al, Civil Action No. 4:18-cv-00167-O. (The case is generally known as “Texas v. Azar”).

That federal district court struck down the entire ACA on the grounds that the individual mandate requiring people to buy health insurance was unconstitutional and the rest of the law could not stand without it. Judge O’Connor specifically held that the individual mandate requiring people to have health insurance “can no longer be sustained as an exercise of Congress’s tax power.”

On December 18, 2019, the Fifth Circuit Court of Appeals agreed with this reasoning and affirmed the finding that the individual mandate was unconstitutional.  But, it sent the case back to the district court to determine if the rest of the ACA could pass the constitutionality test without the individual mandate.

Can the ACA pass constitutional muster without the mandate?

The remaining seminal question is can the individual mandate be severed from the ACA or is it so inextricably intertwined with the remaining provisions that the ACA cannot stand on its own.

The Supreme Court has said that the “standard for determining the severability of an unconstitutional provision is well established.”  First, if a court holds a statutory provision unconstitutional, it then determines whether the now-truncated statute will operate in “a manner consistent with the intent of Congress.” Alaska Airlines, 480 U.S. at 685 (emphasis omitted). This first step asks whether the constitutional provisions—standing on their own, without the unconstitutional provisions— are “fully operative as a law.”

Second, even if the remaining provisions can operate as Congress designed them to, the court must determine if Congress would have enacted the remaining provisions without the unconstitutional portion. If Congress would not have done so, then those provisions must be deemed inseverable. Alaska Airlines, 480 U.S. at 685 (“[T]he unconstitutional provision must be severed unless the statute created in its absence is legislation that Congress would not have enacted.”)

“Severability analysis is at its most demanding in the context of sprawling (and amended) statutory schemes like the one at issue here. The ACA’s framework of economic regulations and incentives spans over 900 pages of legislative text and is divided into ten titles.”

As the Fifth Circuit Court of Appeals noted, “ …  this issue involves a challenging legal doctrine applied to an extensive, complex, and oft-amended statutory scheme. All together, these observations highlight the need for a careful, granular approach to carrying out the inherently difficult task of severability analysis in the specific context of this case.”

Health care for millions of United States citizens hangs in the balance. Health insurance policy and individual decisions are life and death decisions. The ACA is a complex, vast piece of legislation. As such, the Court of Appeals sent back the remaining portions of the case to the district court to make detailed determinations as to what parts, if any, of the ACA can survive separate and apart from the individual mandate.

Since the district court already made an initial determination that the ACA could not stand without the individual mandate, it is not a stretch to presume that the district court will make the same ruling but this time, will set forth a legion of supporting facts and legal analysis supporting the ruling.

The ramifications of this decision if affirmed by the Supreme Court could be catastrophic.

Ramifications

The impact on the mental health and eating disorder industries and communities could be catastrophic.

The following table sets for those states which have implemented plans, or have contingency plans in place should the ACA be held unconstitutional:

ACA Protection Bills Enacted Since February 2018

Only thirteen (13) states would protect those persons with preexisting conditions. As for the other 37 states in the Republic?

Clearly, the most catastrophic loss would be coverage for people with pre-existing conditions, a condition which is prevalent amongst those suffering from eating disorders. Treatment centers and counselors would necessarily become even more dependent on private pay patients as insurance coverage would be denied or limited. This could result in the growing manifestation of the self-fulfilling perception that eating disorders are merely a “rich little, white girl’s disease.”

Despite the passage of the ACA and Mental Health Parity Act of 2008, insurance providers have been carefully scrutinizing residential treatment for eating disorders for medical necessity. Weekly peer-to-peer reviews are not unusual. Insurance guidelines independent from those set forth in generally accepted standards of care are adopted in insurance policies.

With the harsh reality that the individual mandate of the ACA has now been ruled unconstitutional by two courts, we face the new reality … that is, insurance providers will increase their scrutiny of claims for treatment, that they will rely upon the Court’s holding that the ACA is unconstitutional and will phase back in their denying claims because of pre-existing conditions or and will remove the cap on the maximum amount of out-of-pocket expenses incurred by insureds.

The Texas v. Azar decision constitutes a grave crisis impacting all Americans. This crisis could shake the very foundation of the Republic at a time when both major parties are more intent on promulgating the power of their own party and tearing apart the other party. Confidence in our political leaders is non-existent. Collaboration is non-existent.

And yet, the only possible long-term solution is to rediscover that collaboration and come up with a bipartisan plan that results in health care being made available to all Americans at a cost which is affordable. Unfair insurance practices must be curtailed. The most vulnerable of our citizens must be provided with health care which is both substantive and affordable.

The crisis is here. The Visigoths are at the gates.

In early 2019, discussions were held with friends, family and professionals employed in the mental health field. The problems confronting persons suffering from mental health issues were legion. Stigma. Lack of treatment options. Lack of awareness. No public voice. Limited financing of research and few research grants. Politicization of communities. Purported leaders more concerned with perpetuating their own image rather than building the power behind the message.

When faced with overwhelming problems, one can allow despair to dictate future conduct. Or, one can take those problems and use them as inspiration to enact change. We determined that a weekly radio show could provide an opportunity to address some of these issues in a public forum. Mental health issues have been locked in families’ dark closets of despair, being held in shame-filled ignorance for far too long.  Thus, The Mental Health Moment was born. The name itself was the brainchild of Patti Geolat, the founder of the Something for Kelly Foundation. With this, the search for like-minded persons commenced.

Judge John Payton has been hosting a radio talk show in morning drive time for a number of years in North Texas. With his history of helping troubled adolescents and commitment of service, Judge Payton was a natural ally. When approached with the idea of having a weekly 30 minute segment on mental health, Judge Payton enthusiastically got on board. So now, The Mental Health Moment had a public forum platform. The next task would be to find a broad list of experienced, mental health providers respected in their fields.

Enter Professor Carolyn Black Becker from Trinity University. Dr. Becker introduced us to the Psychology Expert Media Panel from the Coalition for the Advancement and Application of Psychological Science. With this, we now had a list of mental health experts.

The Mental Health Moment now with a public platform and a list of expert mental health providers sought financial support. To obtain this initial funding, Acadia Healthcare stepped to the plate. And on September 3, 2019, The Mental Health Moment aired its first program, stumbling and staggering a bit but with great enthusiasm and verve.

Each week has brought new insights, informative guests, moments of humor, moments of tears. We wanted to touch hearts, minds and souls. As time continues to march on, we hope to be able to continue to bring future guests on various aspects of mental health. To educate, to inform, to entertain and to help.

Our past guests have included [click on their names for the hyperlink to their talk]:

Dr. Cynthia Bulik

Eating Disorders and Genetics

Dr. Bulik spoke on eating disorders, the genetic and biological aspects of the disease, the ANGI initiative, and the possible future of the industry.

Dr. Stephen Hollon

Depression

Dr. Stephen Hollon, from Vanderbilt University spoke about depression, early symptoms to watch for and treatments for addressing and lessening depression symptoms.

Phillip Van Guilder

Suicide, Addiction and Mental Health Resources

North Texas mental health icon, Phillip Van Guilder discussed mental health resources available in North Texas, addiction issues and suicide prevention.

Dr. Jasleen Chhatwal

Complex Mood Disorders

Dr. Chhatwal, from Sierra Tucson spoke about complex mood disorders, early intervention and integrative medical treatment.

Elissa Myers

Eating Disorders Organizations and Treatment

Ms. Elissa Myers, the Executive Director of the Academy for Eating Disorders spoke of the organizations within the eating disorder industry, treatment modules and future needs.

Dr. Bethany Teachman

Anxiety

Dr. Teachman, from the University of Virginia spoke on anxiety, anxiety related issues, treatment of these issues and provided on-line resources to consult.

Dr. Lynn Jonen

Mental Health Check Ups

Dr. Jonen spoke on the importance of annual mental health check ups, the manner in which this could lessen the impact of anxiety, depression and stress.

Mr. Jesus Quiroga

Mental Health Resources for the Disenfranchised

Mr. Quiroga, Director at the Dallas Behavioral Hospital spoke of mental health services and hospitalization for those without resources, on government subsidies and the need for greater access.

Dr. Christine Peat 

Obesity and Weight Stigma

Dr. Peat, Director of the National Center of Excellence for Eating Disorders, spoke of obesity, weight stigma and issues surrounding BMI.

Ms. Cheri Garcia

Addiction, Alcoholism

Ms. Cheri Garcia, Founder of Cornbread Hustle, spoke of her journey addressing alcoholism and drug addiction and her work with felons and those needing mental health treatment.

Dr. Nicole Ortiz

Bipolar Disorders

Dr. Ortiz spoke about the complex nature of bipolar disorders, common co-occurring conditions, stigma and being proactive in seeking recovery.

Dr. Michael Lutter

Eating Disorders and Thanksgiving

Dr. Lutter spoke of the many issues of eating disorders and Thanksgiving. He gave information and knowledge to both those who suffer and their caregivers regarding dealing with triggers and how to not just survive, but thrive during the holidays.

Ms. Vanita Halliburton

Suicide and North Texas Resources

North Texas mental health guru, Ms. Halliburton spoke on teenaged suicide and resources to help those afflicted with mental health issues.

Michael Webb, LCSW

Anxiety and Stress during the Holidays

Michael Webb spoke to us about anxiety and stress during the Holiday Season and how we can approach and address these topics to allow us to better embrace happiness and love.

The Future

The future of The Mental Health Moment for the rest of 2019 and 2020 is bright. We are going to showcase Dr. Stephanie Setliff from ERC Dallas, Diana Leburn from The Refuge, Bianca Jackson from New Friends New Life talking about human trafficking and the mental health toll resulting therefrom, Don Blackwell discussing an upcoming Legacy of Hope and many other guests on wide and varying topics.

No topic regarding mental health care will be off limits. We recognize that some subjects may be difficult and even painful for some people. But, as a society, we can no longer allow mental health issues to remain in the closet, to fester, to grow and to destroy.

We ask you to walk this path with us, to embrace your own soulful journey, to live life to the fullest and to reach out one helping hand to those less fortunate, to those who need our help, to those whose lives can be changed through love, compassion, joy and understanding. Help us Save Lives … One Precious Life at a Time.

[We welcome any suggestions as to future speakers who you believe will be inspirational and who can help spread a message of hope.]

On November 6, 2019, the Academy for Eating Disorders (“AED”) in conjunction with the Strategic Training Initiative for the Prevention of Eating Disorders: A Public Health Incubator (“STRIPED”) a research and training program based at the Harvard T.H. Chan School of Public Health and Boston Children’s Hospital, announced they have teamed up to collaborate with economic consulting firm Deloitte Access Economics to develop the most comprehensive report to date on the social and economic costs of eating disorders in the United States.

Although garnering very little media attention in the United States, this Report could result in tremendous breakthroughs in the treatment of eating disorders in the United States. Its importance cannot be understated.

According to the November 6 release, “A national advisory steering committee of members bringing expertise in psychology, medicine, epidemiology, economics, decision sciences, policy, and lived experience with eating disorders will oversee the project. Most of the advisors are members of AED with some additional advisors from outside the field to bring unique perspectives to the work. The Deloitte team will have responsibility for the technical economic modeling and for writing a final scientific paper for publication and a full report to release to policymakers, healthcare provider, and community advocates to inform resource allocation decisions related to research funding and health services.”

So, what does this mean? Isn’t there a significant likelihood that this Report, like many reports before it will simply fall into “the gap” and be disregarded? And what possible impact could it have in the eating disorder industry?

The answers to these questions can be derived from a similar study conducted in Australia, the results of which were released in 2012.

South to Australia

The Australian Deloitte Access Economics report, commissioned by the non-profit Butterfly Foundation for Eating Disorders, studied the economic and social impact of eating disorders including anorexia, bulimia, obesity and binge-eating disorder.

The Australian Report found that 913,000 Australian citizens were living with an eating disorder. This figure dramatically contrasted with the last official estimate released in 2003 by the Australian Institute for Health and Welfare. (“AIHW”) That report estimated the number of people suffering from this disease at 23,464.

The Australian Report also estimated the costs to society in terms of costs of care, productivity cost and deadweight loss defined as “foregone productive opportunities to society associated with higher taxes due to illness.” This estimated “costs to society” was $69 billion in 2012 alone. The costs of treatment alone for eating disorders was found to pose a substantial economic burden. For example, in the Australian private hospital sector, the treatment of an episode of Anorexia was estimated to come second to the cost of cardiac artery bypass surgery.

With regard to the standard mortality rate, the Australian Report, using the then latest meta-analysis of epidemiological studies from the published literature (the so-called gold standard of health research) indicated that mortality rates are almost twice as high for people with eating disorders and 5.86 times higher for people with Anorexia Nervosa compared to those without the conditions.

The Australian Report estimated the productivity impact of eating disorders at $15.1 billion in 2012, similar to the productivity impacts of anxiety and depression which were $17.9 billion in 2010. Of this cost, $2.0 billion was due to lost lifetime earnings for young people who die. Eating disorders also had lengthy duration – an average of around 15 years in survey respondents – which can mean long lasting productivity impacts for those living with eating disorders, such as lower employment participation (costing $6.0 billion) and greater absenteeism ($1.8 billion) and presenteeism ($5.3 billion). Productivity costs were borne largely by individuals, but also by the Australian Federal Government (in the form of less taxation revenue) and by employers (sick leave and lower productivity from presenteeism).

Finally, the Australian Report estimated that for every $1 spent in proactive, preventive care, it saved approximately $4 on reactive treatment care on the back end.

A well-known advocate in Australia opined that the impact of the 2012 Deloitte Study had been MAJOR. That its impact was ongoing. It presented facts, it separated facts from the emotions surrounding the disease, it presented statistics and it accurately calculated the economic cost. She later stated, “All this has been hugely influential in providing a foundation, an irrefutable reference point in challenging and correcting long-held misconceptions about eating disorders and in bringing about action at state and federal government level to improve access to eating disorder services and support.”

Back to the United States

With this background, it is logical to assume that the US Report will structurally be similar in many ways to the Australian Report.

Prevalence estimates would be categorized by the various types of eating disorders set forth in the DSM-V presumably using recent eating disorder surveys for the United States.

For the US Report to be broad based and useful, Deloitte would have to estimate the financial costs of eating disorders on the mental and medical health systems. Presumably, the US Report would include loss of productivity, other financial costs, and loss of well-being proximately caused by eating disorders.

Deloitte would need to estimate efficiency losses (a/k/a  “deadweight losses”) caused by eating disorders. Efficiency losses refer to the costs of raising additional taxation revenue to pay for publicly-financed services. Similar efficiency losses should also be estimated for additional taxation revenue as both federal and state governments may need to increase taxes to offset the reduction in revenue.

As with the Australian Report, the US Report should include additional financial costs, people’s pain and suffering and premature death from eating disorders. These factors can be quantified as costs in terms of diminished quality of life. In the Australian Report, the loss of well-being was measured using the burden of disease methodology, which was developed in the 1990s by the World Health Organization, World Bank and Harvard University.

The US Report would need to include diagnosis, complications and comorbidities, prognosis, treatment options, and descriptions of the specific types of eating disorders. Finally, the US Report would need to include a thorough and clear language explanation of the methodologies, data sources and modeling techniques used to calculate the economic burden of eating disorders.

Application in the Industry

If the US Report is as thorough as the Australian Report, its application and use in the United States would be invaluable. The eating disorder industry would have statistics assembled by a reputable third party with no conflicts of interest or any appearance of impropriety.

Accurate mortality rates. Accurate financial cost numbers. Loss of productivity. The financial savings to employers and insurance companies by embracing proactive preventive care instead of reactive, ineffective treatment on the back end. Being able to approach employers, especially those which utilize self-insured, group health insurance plans and advise them that if they spend $1.00 on proactive, preventive care they can save $4.00 on reactive health costs. [Assuming that these are the numbers discovered by Deloitte.]

This Report would also be another weapon in the arsenal for attorneys to use against insurance companies which deny claims in bad faith.

The Report could also be utilized as a baseline in establishing actual evidence based treatment guidelines with em

The US Report could also constitute the foundation upon which eating disorder bills in the nation’s capital and in state capitals are based. Long abandoned bills which once emphasized research could be resurrected since they would now be supported by objective, third party information, statistics and facts. Research exploring that aggressive, preventive, proactive measures with possible pharmacological involvement could be pursued. Bills which emphasize research into this disease and which explore actual evidence based treatment guidelines could be developed.

Imagine having generally recognized and accepted standards of care to treat eating disorders.

The US Report is coming. Undoubtedly, there will be those who oppose or criticize it. In the spirit of openness, certainly their voices will be listened to and when necessary, if legitimate deficiencies are noted, one hopes that they will be addressed. But so too, their incentives, financial or otherwise, who oppose the US Report and its many possible positive ramifications would also be subject to scrutiny.

But, change is coming. And this time, it appears as if that change is for the betterment.

“To fear death, gentlemen, is nothing other than to think oneself wise when one is not, to think one knows what one does not know. No one knows whether death may not be the greatest of all blessings for a man, yet men fear it as if they knew that it is the greatest of evils.”

          Socrates

“The day which we fear as our last is but the birthday of eternity.”

          Seneca the Younger, Roman Philosopher

When a loved one passes, especially if that loved one is a child, we mourn in a manner that cannot fully be grasped by those who have not experienced this personal tragedy. When a loved one has breathed their last, we suffer an initial, harsh shock. Whether we immediately fall into a place of numbness or loud lamentation, the pain we experience is deep, personal and intimate.

IF one is lucky, as time goes by, that pain goes from searing agony to a dull ache lurking just beneath the surface. Many believe that they will one day be reunited with the person who passed. And we grieve as we must. As our own gifts and flaws dictate.

Today marks the third year upon which my beloved daughter, Morgan was taken. And so, some of the many questions I ponder include thoughts of reunification, the soul, life, death, energy and humor. And yet, I also wonder if the very best parts of Morgan never left. If she, and others who have gone both before and after, are truly “gone.”

[This article may be a bit longer than most of my past musings. It involves three seemingly distinct topics and yet, all of which are intertwined. Bear with me, fill that glass of wine or cup of coffee more fully and soldier on.]

What are we?

What are we? What constitutes the individual? What is the nature of our far too brief existence on this third rock from the sun? What makes us what we truly are?

It is universally acknowledged that our biological bodies are a combination of matter and energy. That energy is both electrical (impulses and signals) and chemical (reactions). And as the understanding of the complexities of our own self becomes more informed, we embrace the understanding that the majority of our body consists not of matter … but of energy.

And energy is eternal. The First Law of Thermodynamics in part states that energy can neither be created nor destroyed. Energy cannot die. However, energy can change forms. Energy can also flow from one place to another.

All of our energy, every vibration, every thought, every Btu of heat, every emotion, every passion, every particle that we generated or which defined us, our very consciousness remain in this universe. The warmth of the sun we absorb on our faces, all of the energy particles whose paths are altered by the sound waves of our laughter, hundreds of trillions of particles, race on like joyful children, their pathways forever changed and yet still very much alive.

Since energy cannot be destroyed and our physical bodies consist of energy, are we not justified in questioning whether we truly die? Or, do we merely transition and transform into something else? Reincarnation? Become one with the Lord? Angels and demons? Certainly, once this transitional process toward what we refer to as death begins, so too our soulful energy must also transform. All is by design.

That is because the Universe is perfectly on time. This includes the moment a person is born and when that person transitions away. No one leaves before his or her time. Perhaps death is not something unnatural or untimely. Perhaps instead, it is that person’s energy, their Higher Self creating whatever circumstances are necessary to achieve its own transformation.

What truly matters is that the energy essence of a person does not, and cannot perish. Instead, incarnations are completed and the soul, Higher Self, spirit, or whatever you wish to call it, moves on. This is not just an exercise in semantics or a belief in a particular religious dogma, but is clearly dictated by the First Law of Thermodynamics.

So, what makes a person, a person? Why did Morgan (or “Mighty Mo” as she was called by some) have such a strong impact upon so many young people with whom she shared her journey? When a loved one transitions on, isn’t it the intangible we miss most? We miss their intellect. We miss their wit. We miss their personality or outlook that inspired us or filled us with hope. We miss how we felt when we were in their presence. We miss that they made us feel better and stronger than what we perceived ourselves capable. We miss in some ways, a part of us that we believe was also taken. All of these things are not matters of the body. They are matters of the soul, our eternal energy.

Our loved ones remain, not just in our memories, but also in reality— perhaps just not in a reality that our limited senses can process and comprehend. And so, we experience the grieving process.

We place so much importance on the here and now. For many, our corporeal existence defines the extent of our knowledge and wisdom.  When a spouse, a parent, a beloved child transitions, we, the survivors mourn. We grieve. For some, that grief destroys them. For some, they wear a “shroud of grief” until their own physical existence ends. A shroud that defines their remaining days spent in a dull twilight consisting of mere shadows of gray. We miss our loved ones. We remember the last breath they took with pain and anguish.

And yet …

And yet, it is only the earthly vessel that has been taken. It is the mere vessel that perishes. That inherently fragile receptacle designed for one purpose. That vessel’s sole purpose is for the briefest of time, to be entrusted to hold our essence, our eternal energy. And our physical existence is designed to fail at that very task. Planned obsolescence.  Our physical bodies are weak and are susceptible to physical trauma, ailments and diseases. Our physical bodies are finite. And yet, our physical bodies have such importance since they are the conduit, the messenger to allow our eternal energy, our souls, to communicate and interact with the energy of others.

The Bell Tolls Again

[I began to write this article on October 14. Often times, I receive  a feeling or intuition to begin to write. When that happens, the words flow. The foundational basis above this paragraph was written prior to October 15. On October 15, my 88 year old father checked into a hospital with abdominal pain and bowel blockage. On October 16, his surgeon advised that his abdominal cavity was ravaged with cancerous tumors. Even in the event he becomes well enough to leave the hospital, he has been given maybe two months.]

And so.

And so.

And so, at this point, a reader may wonder whether the words in this article are just that, merely words. A hollow message. The commemoration date upon which my beloved daughter was taken, that being October 30, 2016 is upon me. My father facing a certain transition in very short order. Is the message in this article before October 16 meaningless drivel? Or are the words more of an indication of a resilient soul, an unquenchable spirit and a driven energy force which cannot and will not be denied? How we deal with what we refer to as “death” is just as important as how we deal with life.

And so, for the next two weeks, when emotions or thoughts or inspiration happen, I will journal them here and include them in a raw, open and transparent manner.

As surely I must.

His name is Richard E. Dunn. He is known to the many friends he has made throughout his life as, “Red.”

10/17 – You sit in a room in a hospital, the very same hospital in which your daughter breathed her last nearly three years before, as a surgeon tells your father that he has about three months left. Cancer had rapidly spread throughout his abdominal region. At 88 years old, you see that the message registers even though his mind is foggy with pain medication. You see that it registers in his eyes.

As the surgeon starts to talk about chemo and radiation, he interrupts and says he is not undergoing “any of that.” The surgeon goes into a few more topics, none of which seem of particular importance when compared to the news just delivered. As the surgeon walks out of the room, he shakes my hand and looks me in the eyes … he has a sad, yet professional look. You know he has delivered this type of news numerous times before.

Your father looks up at the ceiling, then at you. In a quiet voice, he says that he has lived a long time but some things you have to accept since now all hope is gone. The natural inclination is to say, “There is always hope.” But, that type of response sounds too contrived, too hollow. Instead, you kiss your dad on his forehead and tell him you love him.

Your older brother and older sister are in the room as well. Both strong willed, Type A personality people. But for them, for the first time, death is no longer an abstract concept. It is concrete. It is real. It has come for a family member. And especially in my brother, a pilot of over 30 years with commercial airlines who shares so many bonds with my dad, I see real pain in his eyes. To him, death is about to become very real.

Later that night as I sit alone contemplating the day, I believe I can feel a presence around me. A calmness. I certainly do not hear, but can almost “feel” a message. A message along the lines of, “Daddy, you have done this before. You have weathered far worse. You are needed. I am with you.”

And I know I am not alone.

10/18 – A  realization begins to manifest itself. In February, my father  had his gall bladder removed. Some cancer cells were found and also removed. In early September, my father was in the same hospital for a partial bowel obstruction. He was there for four days. A number of CT scans were run. The oncologist advised that a few faint shadows were seen but did not appear to be of concern. And the understanding hits that if that is the case, the spread of cancer has been at an incredibly fast pace. Months may no longer be the time table. It may be weeks … maybe even mere days. He does not know this.

As my older sister and I sit in his room, I find myself restless and so begin to wander. I end up in the Margot Perot Center for Women and Infants. This part of the hospital brings life into our world. Babies are born here.

After walking through winding corridors, I finally locate the nursery. Looking through the window, I see the perfect little fingers, the perfect little toes, the pink, black and brown faces, the promise of a full and happy life ahead. And instead of feeling sorrow, I have a feeling of hope, of renewed life. I was led there not to mourn and grieve for the life that was taken and the life which will be taken in the near future. But, to see those faces, those incredibly little bodies, to feel hope and joy and love. I don’t know why or what compelled me to see those angelic babies. I do understand that something beyond my comprehension is guiding me to various points on a journey, points which fill me with the necessary strength to weather the coming days and years ahead.

Birthdays and Tornadoes

10/20 —  The anniversary of my 61^st rotation around the sun. I have come to look upon birthdays not as a celebration of my own life, but instead, as a day to honor my parents for bringing me into this existence. I talk with my mother, telling her that I love her. I spend time with my dad. With a groggy voice, he wishes me happy birthday. I tell him I love him and that I know I have the best parts of him with me and always tried to make him proud.

I again feel calmness. Certainly, a sadness as well as we face the inevitable. Yet, when you leave your heart, and your mind and your soul open, you  allow them to be filled with strength and resolve.

That night as a I share a dinner with two incredible people in my life, I am filled with a wonder that can only come from … a sharing of the love of life.

That very same night, while we are dining, a tornado rips through the City of Dallas leaving a path of destruction in its wake. Homes, restaurants, property damaged or destroyed. The hospital in which my father may breathe his last is in the tornado’s path. All patients are moved out of their rooms and into the hallway until the all clear is given. Property less than one mile from the hospital is severely damaged some even destroyed. Fortunately, the hospital was spared.

The damage elsewhere is devastating and widespread. And yet, there are no reported deaths. This is especially miraculous since the tornado remained on the ground for 16 long miles, was category F-3 in its intensity, and carved a path of destruction through a heavily populated area in the City of Dallas.

Overwhelming devastation and yet, all lives spared. No one leaves before their time.

10/21 – Less than 12 hours after the tornado, I was advised that my father’s days are indeed numbered … that he is expected to transition within 3 to 4 days at most. Frantic calls are made to siblings who reside out of town.

In fact, in a strange twist, after believing my father had months to live, my older brother departed for a long planned, brief trip to Italy, this time to get married.  Ironically, he was in Italy three years before when he received word that Morgan had passed. Just as then, once again, he is frantically trying to get back to Dallas. The strange, sometimes mocking, and yet sometimes humorous ways that the Universe unfolds is not lost. Later that night, my dad is transferred to the Hospice Floor.

10/22 – His transition is near. Numbness is certainly present. I also note that complexities in life also present additional obstacles and challenges. My younger brother, who resides in Orange County, California is currently suffering from another bout of diverticulitis, double hiatal hernias and severe pain in his back and spine. He is not cleared to fly. In fact, he discovers the doctor who treated him for these conditions prescribed the wrong medication. His departure to Dallas is delayed by another day. And so my older sister and I arrange a Facetime session when my dad is awake. The joys of modern technology. Sadly, my dad has reached a state where he cannot speak and for the most part sleeps until pain wakes him into a state of grogginess.

How easy it would be to fall into despair … to grieve, to be consumed by fear. And yet, when given the news of cancer and its severity, my dad faced that news not with outward fear, pain and anger, but with grace. The last life lesson he will give is how to face your transition with courage.

10/23 – Is today the day? My older brother is trying to get to Dallas from Italy. My younger brother’s flight is expected around 1:30 p.m. I see my father in the last bed he will be in … the bed in which he will transition. I have nothing but good memories and love in my heart. My sisters and I constantly have music playing in the background. Some of dad’s favorites, Les Brown, Sinatra, Dean Martin, Diana Krall.

And then, I am filled with the understanding that another point on the journey is beckoning, is summoning me. And I must surely answer its call. So, with unsure steps I walk to the fourth floor of the Haman Building in the hospital. The building, the floor, the room in which Morgan breathed her last.

As I walk down that 4^th floor corridor, I am trying to shut out all physical sensations and just … feel. The last time I was here the overwhelming feelings of grief, pain, shock and despair were my masters. As I begin to approach the last room she was in, I look and then … start to laugh. The room has a plastic construction tarp over it with signs noting that the room is under construction!

I am shaking my head still chuckling when a nurse walks by and asks if I need anything. With a smile on my face, I tell her that no, I got all that I need. There is only life here … not death. Not pain. Morgan has left the building! And so too, I need never return. There is nothing left here. The specter of grief has been exorcised from here. My heart is lighter.

Still, the reality of why we are assembling in Dallas remains. Firm in your belief that your father is holding on to that thin strand of life only until he sees all of his children one last time. It weighs heavily on the heart. No matter the strength of your convictions, the initial shock will arrive. You then rediscover the emotional and physical exhaustion that overwhelms you as you wait for the inevitable. An exhaustion that consumed you three years before. But, perhaps less so this time.

Your older brother manages to catch his flights from Italy and is expected to arrive at the hospital at 8:45 p.m. You know that your father’s transition will likely come shortly thereafter. You juggle the feelings of sadness, fatigue, resolve and faith. And you hope for a sign, any sign that may give you just a bit more inspiration, more strength for the coming days.

10/24 – Enveloped by the sound of loved ones crying, tears freely flowing. Later that night, enveloped by the sounds of love and laughter. At 12:54 p.m., Dallas time, my father breathed his last. Surrounded by all 5 children, their spouses, significant others. Surrounded by love. Once again, hearing those devastating words, “He’s gone.”

Tears of grief. Tears of sorrow. And yet, a firm conviction that his energy, his soul, his Higher Self is soaring. Since he is a military veteran, the hospital has a policy for these heroes. After they pass and are being escorted to their next resting place, hospital employees line the first floor passage. My siblings stand next to each other. My father being pushed out in a gurney covered by an American flag. They pause in front of us. The flag on top of him is reverently lifted and folded in a precise, orderly military manner. Another flag had also been draped over my father’s body. The folded flag is presented to my older brother, the first born, with respect, with honor.

I look around and see everyone with a hand on their heart. He would want it no other way. People’s eyes fill with tears as we feel the love, the respect, the honor paid to someone that no one other than the immediate family knew.

That night, the family gathers at the house. We drink some incredible wine, eat some delicious food and tell stories about my dad, and yes, Morgan which bring tears to our eyes. But this time the tears also come from laughter.

We remember.

And yes, we grieve. But sometimes, that grief does not destroy us. Sometimes that grief does not define us in a negative way. Sometimes that grief fills us with incredible strength, purpose and insight. Our soul’s, our Life Energy’s path reveals itself just enough to keep you on that path. Its ending is not clear. Nor does it need to be. You only need to find a way to stay on that path. And you know you do not walk that path alone.

A person whose path is placed in front of them, a person who is filled with resolve, inspiration and strength, a person who fears naught can do wondrous things. Not for his or her own personal glory, but because the message is powerful, clear and universal. The energy of others fill that person with hope. Hope that sustains them.

“Remember RED, hope is a good thing, maybe the best of things, and no good thing ever dies.” 

          Andy Dufresne, The Shawshank Redemption

“Beware lest you lose the substance by grasping at the shadow.”    

          Aesop

“Freedom to differ is not limited to things that do not matter much. That would be a mere shadow of freedom. The test of its substance is the right to differ as to things that touch the heart of the existing order.”

          Robert Jackson, Author

“Beneath every story, there is another story. There is a hand within the hand…… There is a blow behind the blow.”

          Naomi Alderman, Author, The Power 

“When you challenge other people’s ideas of who or how you should be, they may try to diminish and disgrace you. It can happen in small ways in hidden places, or in big ways on a world stage. You can spend a lifetime resenting the tests, angry about the slights and the injustices. Or, you can rise above it.”

          Carly Fiorina, Former CEO of HP and Presidential Candidate

“Censorship is to art as lynching is to justice.”

         Henry Louis Gates, Literary Critic

_____________________________________________

Last week’s article on “F.E.A.S.T. – Friends Exasperated at Anorexia’s Special Treatment” was unique for the vitriol the article generated amongst the eating disorder community. By eating disorder community, I refer to the foundations, groups and individuals who have been impacted by this disease, including advocates and activists. The immediate aftermath resulted in banishment from groups, censorship, harsh words being directed at the author, a loss of whatever respect existed in some people’s eyes and a picking up of pitchforks and torches.

This vitriol was directed NOT at the substance and accuracy of the article, its facts and research. These were never challenged. Instead, the angst was universally reserved for its “tone.”

So, in the spirit of open communication, let’s address some issues and questions which were raised.

First, was the article necessary at all?

The answer is, of course not! … IF …

Had the subject of weight stigma and increasing awareness for binge eating disorder and bulimia been approached openly and in a collaborative, non-confrontational manner instead of being presented as a Zero Sum Game Equation, where “anorexia has to stop being centered and what can we do to change that,” the article would not have been necessary nor written. But, the true message underlying the topic of the broadcast was not presented openly.

Other reasons supporting the necessity of the article will be elucidated throughout.

Second, why was the “tone” so harsh? Was that really necessary?

The answer lies in the context and circumstances surrounding the substance of that particular article which dictated its “tone.”

Between the time of the broadcast and prior to the article being published, a number of people and entities had opportunities to correct the misinformation regarding mortality rates.  Certainly, F.E.A.S.T. could have addressed and rectified the misinformation any time in the approximate two weeks after the broadcast. Yet, even that would not have been necessary had even one of the treatment professionals who appeared on the broadcast immediately corrected the mortality misinformation during the broadcast. Ms. Muhlheim, in all reasonable probability, had that information at her fingertips. Ms. Muhlheim, just four days after the broadcast published an article which had been medically reviewed by a board certified physician stating that anorexia had a much higher mortality rate than the other eating disorders.

Before publishing the article, I spoke with two medical doctors and asked them their understanding of mortality rates. Each not only immediately responded anorexia, but were quick to point out a specific type. Mortality rates are not a closely guarded secret being held by medical professionals in the eating disorder industry.

Eating disorder professionals, medical doctors, psychologists, counselors and clinicians who have the expertise and in depth knowledge of eating disorders have the non-delegable, absolute duty to insure that only accurate information regarding eating disorders is released to the public. That is because people and families who suffer from, or who have been impacted by this disease justifiably rely on this information and that it be accurate. Lives depend on it.

And yet, no one chose to correct this crucial misinformation. The eating disorder industry is already rife with false statistics, incorrect information, premises not based on reason, reality or accountability, no generally accepted standards of care, silo mentality and unfair practices from insurance companies.

F.E.A.S.T. dropped the ball in disseminating false information regarding the deadly nature of anorexia and then by not proactively providing correct information. And yet, the fault lies in so many other areas as well.

Third, you did not have to go after Laura Collins. You could have gone after F.E.A.S.T. Was that really necessary?

In this case, unfortunately yes.

The misinformation came directly from Laura during a live broadcast. This was not a circumstance where an organization generally issues art work that is controversial and then the person behind it cowardly hides behind a cloak of anonymity. See the graphic NEDA released on July 23, 2019.

This was Ms. Collins individually expressing her views. Days before, she also expressed her views by publishing that she was irritated or infuriated by the topic.

I respect Laura’s passion. In fact, Ms. Collins is performing an incredibly difficult job. I would not want that job. Not only that, I could not do her job. Laura has helped so many families. Further, in the not too distant past, I had reached out to Ms. Collins on a number of occasions asking for her input and advice on several topics in the eating disorder industry. She graciously responded and gave sound, substantive information and advice. At some point unfortunately, her spirit of collaboration changed. Since she is the founder and leader of a parent’s group, and the information contained in past articles have been of help to any number of parents (as expressed to me) I was disappointed when Ms. Collins publicly stated that I was to not send her any future articles. But, that is certainly her prerogative. And yet, censorship or closing your eyes to all relevant and material information is fraught with peril.

Nonetheless, the substance, research and facts set forth in my articles are sound. When mistakes have been made, I have publicly rectified and corrected the information. I often consult with others before publishing. But also, being a warrior for 35 years in courtrooms hones and impacts a person’s communication style and ability. If that sometimes results in an unpopular or perceived harshness of the “tone” of an individual article, there are reasons for that, some obvious, some subtle.

During the ICED Conference in New York this past March, I published an article on the past sexual assaults and circumstances at Timberline Knolls which were detailed in a Chicago Tribune article published just the week before. The “tone” in that article was attacking. Two people from Timberline Knolls approached me at the Foundation table in the Exhibit Hall during the Conference. One was an outreach representative. She started in on how unfair the article was and the discussion had the potential to become unproductive. The other person was Timberline Knolls’ medical director, Dr. Johnny Williamson. Dr. Williamson jumped into the conversation and within a very short amount of time, a frank open exchange of ideas and communication resulted. The next month, Timberline Knolls hosted a luncheon in Dallas that I attended. Dr. Williamson appeared as one of the main presenters. I had some very direct questions which were restricted to the topic at hand. And I believe a mutual appreciation for professionalism was reached.

During that same ICED Conference, I was approached by Dr. Ken Weiner, the CEO of the Eating Recovery Center. For those who have read past articles, you may recall that last year I published a number of articles on ERC, most of which were scathing and derogatory. Dr. Weiner approached me, we shook hands and had a very frank discussion. We both agreed that in the future, undoubtedly we would continue to disagree. But, I also stated that in the future, if concerns were brought to my attention, I would first contact him to see if the matter could be addressed in a private forum.

This scenario happened approximately 2 months ago. I was approached by a family which had issues with ERC with regard to their daughter who was then receiving treatment in ERC Denver. As I had represented to Dr. Weiner, I reached out to him via email. He immediately responded. The next day, I spoke with the medical director of ERC Denver. And we resolved the situation to the families’ satisfaction. No articles were written. This would not have happened had Dr. Weiner not approached me in New York.

The reasons supporting the manner in which an article is written are not always open and obvious. They often include subtle nuances not realized until a later date. And sometimes, the audience for whom the message is intended is not always apparent on the surface. It only manifests itself later.

Fourth, even still, your article came out as hateful and angry. That is not acceptable and don’t you think it needs to stop?

In this case, the underlying premise with regard to “hatred and anger” is not entirely accurate and the “tone” of each article is dependent on its course … and the true intended audience.

Hate is an emotion which takes far too much effort and energy to maintain. The vast majority of time, hate is a wasted emotion that only feeds upon itself creating further divisiveness.

I certainly do not hate Ms. Collins by any stretch of the imagination. To the contrary, I have found her to be a passionate, resolved warrior. I respect how she has built up F.E.A.S.T. and has helped families in numbers too extensive to even possibly list. And when that is the standard a person sets for oneself, it is very perplexing as to why obviously incorrect information would be disseminated under their watch.  

Listening to and understanding opposing points of view can be an art form. It is often a difficult concept since it goes against the grain of a person’s own, closely held beliefs. It can be uncomfortable and it is unfamiliar. And it is becoming increasingly rare.

Most people go through life embracing only their own viewpoints and staying close to people of like minds. With the proliferation of and dependence on the internet, the vast majority of people are drawn to information and beliefs which bolster their own views. We seek out like minded people. We seek out like minded ideas, articles, and information. Most people live life through the microcosm defined by CNN on the one hand or Fox News on the other. As a society, we find ourselves caught in a trap of only knowing what we know without the wisdom to understand that we don’t know what we don’t know … or even being open to the possibility that our views may not be completely accurate.

Only a small percentage of people seek out viewpoints and opinions which differ from their own. They are the explorers of the mind seeking information and knowledge. They strive to be educated. They strive to be enlightened. They strive to learn more about those ideas and vision which differ from their own. They know the universe contains infinite treasures and knowledge to satiate all desires both subtle and gross.

As for being angry …

You’re damned right I am angry. As any parent should be who is involved in the eating disorder industry or community.

I am angry that there is no vision to unify under one spectrum of eating disorders and present a united, collaborative front to mainstream society.

I am angry that so-called generally accepted standards of care are being dictated by insurance companies and not the brightest and the best minds in the eating disorder industry.

I am angry that even treatment professionals and clinicians cannot agree on the best way to treat this insidious disease.

I am angry that the top professionals in the eating disorder industry do not have, or will not generate a public forum where their differing views and experiences can be debated and discussed before the eating disorder community and mainstream society.

I am angry that blatantly false information in the industry can be disseminated and then embraced as if it were gospel truth.

I am angry knowing that the best way to fight this disease, that is through greater scientific research which leads to strong, proactive, informative, and intelligent treatment protocol remains elusive.

I am angry that accountability over counselors and clinicians is lacking.

I am angry that those organizations tasked to be the liaison with Congress are recalcitrant and have chosen to ignore their sacred duties and obligations to families suffering with this damnable disease.

I am angry that October 30 will mark the third commemoration of when my beloved daughter breathed her last.

I am angry that the eating disorder industry appears to be adrift and rudderless.

I am angry that the eating disorder community is allowing messaging that is irresponsible, not based on research, nor peer reviewed studies nor scientific facts and which arguable do not even apply to eating disorders to slowly ebb into the eating disorder mindset.

I am angry that while the eating disorder community stumbles along aimlessly, without a unified direction or collaborative purpose with little to no federal funding, on September 30, President Trump signed The Autism Cares Act of 2019 which recommits to spending a total of $1.85 billion over five years to research and study of Autism. I do applaud those persons with the strength, vision and wisdom behind the Autism movement and am angry that the eating disorder industry cannot demonstrate similar qualities. (More on that in a future article.)

I am angry that we insist on accepting a standard that does not even remotely approach a standard of excellence.

I am angry that segments of both the eating disorder community and eating disorder industry have made it abundantly clear that for them, “the image of the messenger is far more important that the power of the message.”

I am angry that the eating disorder industry is an annual, multi-billion dollar industry and the only parties treating it as such are the private equity firms which own the residential treatment centers and the insurance companies.

I am angry that we cannot disagree on issues … without being disagreeable.

And I am angry as hell that still … one person dies every sixty-two minutes as a direct result of this insidious disease.

And you should be too.