“In an era of unprecedented medical innovation, we have to do more to ensure that patients facing terminal illnesses have access to potentially life-saving treatments.”

            Ron Johnson, U.S. Senator

“Unprecedented technological capabilities combined with unlimited human creativity have given us tremendous power to take on intractable problems like poverty, unemployment, disease, and environmental degradation. Our challenge is to translate this extraordinary potential into meaningful change.”

            Muhammad Yunus, Economist, Nobel Peace Prize Recipient

With regard to Telemedicine and virtual access to medical and mental health care and providing crucial life-saving medical treatment to its citizens, to say that the United States’ current healthcare system has proven to be woefully inept would be charitable.

But from the fiery cauldron of Covid-19 comes bold, new initiatives for access to care. The business week beginning March 16, 2020 saw a number of unprecedented announcements and initiatives regarding emergency care measures pertaining to Telemedicine and Virtual Health Care.

First Initiative

On March 17, 2020 the Trump Administration announced that Medicare administered by the Centers for Medicare & Medicaid Services (“CMS”) would temporarily pay clinicians to provide telehealth services for beneficiaries residing across state lines for an initial sixty (60) day period. This action was undertaken pursuant to the 1135 waiver authority and the Coronavirus Preparedness and Response Supplemental Appropriations Act. For a review of the 1135 Waiver, see the embedded link:

1135 Waiver at a Glance

Second Initiative

During this initial sixty (60) day period, the HHS Office for Civil Rights (“OCR”) will waive the penalties for violations of the Health Insurance Portability and Accountability Act (“HIPAA”) against health care providers who serve patients in good faith through every day communication technologies such as FaceTime or Skype during the Covid-19 nationwide public health emergency.

Third Initiative

As of March 16, 2020 and continuing for as long as the Secretary of Health and Human Service’s designation of a public health emergency remains in effect, DEA-registered practitioners in all areas of the United States may issue prescriptions for all schedule II-V controlled substances to patients for whom they have not conducted an in-person medical evaluation via telehealth communication systems, provided all of the following conditions are met:

• The prescription is issued for a legitimate medical purpose by a practitioner acting in the usual course of his/her professional practice;
• The telemedicine communication is conducted using an audio-visual, real-time, two-way interactive communication system; and
• The practitioner is acting in accordance with applicable Federal and State laws.

These controlled substances include opioids and benzodiazepines.

The Practicalities in Plain(ish) English

To the extent that any attorney can attempt to explain the complexities of these initiatives in understandable terms using the Queen’s English, I will endeavor to do so.

First, these three (3) initiatives pertain only to those patients who receive Medicare benefits. They do not pertain to Medicaid patients nor to private pay patients.

These initiatives will last for sixty (60) days or for as long as the Secretary of Health and Human Service’s designation of a public health emergency remains in effect.

Some private pay insurance benefit providers have enacted their own emergency measures regarding telemedicine and video counseling. For a review of some of these providers, please go to the following link:

Private Pay Response to Covid-19

If you click on the hyperlink associated with each benefit provider, you can examine the basic information submitted by that insurance benefit provider. As always, for more information contact your HR department, insurance agent or wellness professional for more specific information.

General Rules Regarding Telemedicine and Virtual Counseling

Forty-nine (49) state boards of medicine plus the medical board of the District of Columbia, Puerto Rico and the Virgin Islands require that physicians engaging in telemedicine be licensed in the state in which the patient is located. During this Public Health Emergency, with regard to patients receiving Medicare benefits, this provision has been waived.

With regard to non-Medicare beneficiaries, it is recommended that providers consult with you own state’s licensing requirements. Each state’s licensing requirements can be found at www.fsmb.org. The specific Telemedicine Policies Overview can be found by clicking here:

States TeleMedicine General Guidelines

Medicare patients may use telecommunication technology for office, hospital visits and other services that generally occur in-person. Medicare beneficiaries will be able to receive a specific set of services through telehealth including evaluation and management visits, mental health counseling and preventive health services.

The medical provider must use an interactive audio and video telecommunications system that permits real-time communication between the distant site and the patient at home.

Distant site practitioners who can furnish telehealth services (subject to state law) include physicians, nurse practitioners, physician assistants, nurse midwives, certified nurse anesthetists, clinical psychologists, clinical social workers, registered dietitians and nutrition professionals.

All states and the District of Columbia provide reimbursement for some form of live video telehealth Medicaid fee-for-service.

Until the HHS Secretary issued its emergency order on March 17, 2020, utilizing Skype and FaceTime for telemedicine and virtual counseling subjected a provider to penalties under HIPAA. When the “public health emergency” expires, it is anticipated that the penalties for violating HIPAA for using those platforms will be reinstated.

Experts strongly recommend that medical and mental health providers utilize HIPAA Compliant Platforms and enter into Business Associate Agreements with those Platforms. Some of those Platforms include; Vidyo, Veesee and Zoom.

What Does the Future Hold?

Since I am neither “The Amazing Kreskin,” nor “Carnac the Magnificent,” it is difficult to prognosticate the future of Telemedicine and Virtual Counseling. On the one hand, the apparent ease of the process with technology in its current form is beyond denial. On the other, there is no doubt that video counseling is still a poor substitute for in person, face-to-face interaction.

With Telemedicine and virtual counseling, we can see and hear the patient. And yet, our other important senses are denied their import. We cannot utilize our sense of smell to detect the presence of alcohol. Our urine, breath, body odor. Researchers believe that certain cancers, multiple sclerosis, liver disease, Parkinson’s, kidney or liver failure can be detected through their unique scents. The manner in which the person interacts with his/her immediate environment is more readily apparent in face-to-face interaction. The sense of touch is also lost. We cannot get an accurate read on the texture, substance and moisture in the skin.

Certainly, once this genie is out of the bottle in terms of telemedicine, it is unlikely to ever be put back in. But, as providers focus on whether they CAN provide virtual counseling, the more fundamental question of, “whether they SHOULD provide virtual counseling” is not being asked or examined.

The expanding role of technology in medical and mental health must surely be embraced. But, it must be done so intelligently with a basis in science and with a greater understanding of the human condition.

The Mental Health Moment

To obtain additional information and to address any questions you may have on this topic, I urge you to tune in to the Mental Health Moment on Tuesday, March 24, 2020 at 8:15 a.m. on DFW radio station 1160 AM or www.bigdtalk.com or on Facebook Live at JP, Kathy & “The Crew.” Dr. John Torous of the Beth Israel Deaconess Medical Center is going to address these quickly evolving issues and will answer any questions you may have.

Dr. John Torous

I don’t often write about my daughter Morgan. Those who do read my musings, (and thank you) know that she died on October 30, 2016 after battling eating disorders for over seven (7) years.

But, here is the cold reality. The world has moved on. Even her closest friends have moved on with their lives. Whereas, her transition will always remain a personal tragedy for me and her mother, the eating disorder community and industry has moved on. That is understandable. I expect nothing less.

To address an even greater, perhaps even more harsh reality is the fact that if I constantly posted photos of her on social media, if my musings and writings focused almost exclusively on Morgan and her death, I would be readily dismissed as a grieving father who will never get over her death. A person to be pitied … and then, quickly dismissed.

Now, I will always be a grieving father. That is also a reality. But, pitied and dismissed? No. 

Before Morgan died, life had made its own plans for me. I led a life of relative anonymous superficiality. The depth of my soul was measured by the thimble-full. I represented clients in courts, including at least 20 federal courts outside of the State of Texas, with passion and what I thought was purpose. Creativity and expertise were those qualities to which I aspired. My character flaws were many. At the end of my days, the wording on my tombstone inevitably would have read, “Steven Dunn, He was a damned good attorney and pretty good dad.” And then, October 30, 2016 happened.

In the blink of an eye, a person’s world is turned upside down. A person’s life is shown to them in stark patterns of contrasting black and white. And you may wonder, is that all there is? Is the wording on your tombstone the sum total of your existence?

After a beloved child is taken, for persons of a certain constitution, those persons’ burning passion drives them to bring meaning to the death. By God, there will be a great purpose to what may appear to be a senseless death! You will change the world for the better. And through your sheer force of will, people will stand up, understand and be inspired. Your child’s legacy will not be minimized! And so your journey of redemption and salvation begins.

While you pursue this holy crusade, you often feel like a lone pilgrim in an unholy land. You believe your vision is clear. But, it is not. That “clear vision” is a façade. And you are not even remotely aware that you are operating in a complete fog. You reach out anywhere and everywhere believing you are helping. You are creating “awareness.” Your child will not be forgotten! You raise money. If you have the resources, you arrange mini-conferences or speaking engagements. TEDx talks? Sure. Anywhere. Everywhere.

Then, if you are lucky, as more time goes by, clarity starts to come to you. If you have some skill at writing, you encounter times when the words just flow through you. Words just appear on the screen. Those words are not coming from your head. You feel as if you are a conduit for a deeper, stronger message. And you learn to just let the message appear.

Perhaps you question your religious or spirituality notions or ideas. Not in a mean spirited or aggressive manner. But, in a more inquisitive, open, non-judgmental way. Perhaps you read texts or treatises you would never have previously considered. And you feel your heart open to possibilities never before considered. You marvel at the wonder of God, the soul, the infinite possibilities of our existence.

Perhaps you rededicate yourself to exercise. On walks through your neighborhood, you notice the wonder of life surrounding you. How certain trees bloom at different times and in different colors. The dazzling robin’s egg blue of the sky after a front with rain blows through town, leaving a pristine cloudless sky.

Yes, you grieve still. That is a part of you just as surely as any other emotion. And always will be. But, that grief starts to manifest itself in different ways. As you feel yourself staying on a “path of enlightenment,” the messaging just seems “right.” You are able to look deeper into and overcome your past perception of people. Fresh ideas. Open minded listening to other people.

Internal strength, hope and resolve within grows on a daily basis. And with it, a realization that those qualities, instead of receding, are increasing in intensity. A peacefulness within your heart, your soul, envelopes you. You reach a point where you no longer have to force a direction for your gifts or skills. You no longer have to hunt opportunities. Instead, those opportunities seek you out. Becoming a conduit for a greater, powerful message requires that you completely remove your own ego from the equation.

And when you are successful at that, your mission, your vision become so incredibly clear. For the first time, you realize that the mission and vision you claimed as your own, never really belonged to you in the first place. They belong to something far more powerful. You realize that this vision and mission have always existed. They exist within us. They surround us and exists all around us. Your vision and mission were created and honed by the millions of people who came before you. Those who previously suffered through pain and anguish and tragedy. And who came out the other side.

You realize you are but part of a far greater calling. In opening your heart and your mind, in opening your very life essence to possibilities you not only never before considered, but you didn’t even know existed, you reach a place of strength and peace, of joy and understanding of sadness, of wisdom and tolerance of foolishness even when it is your own. You have begun your arrival.

Immediately after Morgan died, a dear friend gave me a card which in essence read: “When faced with an unspeakable tragedy, 1 of 3 things tends to happen to people; (1). It destroys them, (2). It forever defines them in a negative way, or (3). It fills them with incredible strength and resolve.”

I believe that people do not get to choose which of the three things happens and comes to define that person. It wasn’t until this past week that I encountered a possible name and identification for the third aspect. Some people call it, “Post Traumatic Growth.” (“PTG”)

I am attaching two articles on PTG:

Pro-PTG

Con-PTG

For the most part, the Pro-PTG article seems to track some of the observations and experiences I have encountered along the way. The con-PTG article tends to discredit the notion of the existence of PTG.

The pro-PTG article indicates that not only is PTG very real, but it is something that can be acquired. It can be learned. The con-PTG article attempts to debunk this supposition and draws a distinction between “perceived growth and actual growth.”

Both articles are compelling. And yet, I believe where both articles fail is that they do not explore the possibility that we can no more control whether PTG will define us as we can control whether PTSD will destroy us. Our soul, our life essence cannot be recreated in a laboratory. Our very nature, who we are at our core is beyond science. It is beyond our corporeal understanding.

PTG? I don’t know. I do know a path has been placed before me. And it is the right path for me. A path that was paid for with the dearest blood possible. Who would I be if I chose to leave that path?

To that last question, I will not have an answer. The path is before me. And I am finally ready for the many rigors and challenges which await on that path. The next step beckons and calls. And I answer its call with an open heart, open eyes, strength and resolve within … and I hope, wisdom and understanding.

My tombstone has been wiped clean. Only now, as I stay on this path, the words being carved on that tombstone could read, “Steven Dunn … In His Daughter’s Name, He Helped Save Many Lives.”

“Great moments are born from great opportunities.”

            Herb Brooks, Hockey Coach

Sometimes the darkest of tragedies provide beacons of opportunities. As a collective society it is far too easy to become set in our ways. “We have been doing things, this way, for as long as I remember, it seems to be working, so why change?” The money flows in. We help some people. We believe we are on a path of righteousness. We are going to leave the world a better place than what it was when we first came into it.

And after a promising start, complacency starts to set in. Our vision becomes focused inward, instead of outward, always outward. The voices we most listen to parrot our own beliefs and views. Opinions which do not coincide with our own are disregarded and dismissed. We employ only those people whose opinions on issues and strategies coincide with our own. Our own knowledge is safe. And then, growth begins to slow. What started out as a bold and noble vision sees a decline in passion, then stagnation and finally descent into oblivion.

This descent is sometimes hastened by the unexpected and unforeseen. A tragedy. A pandemic. The sudden death of the leader of an organization. And in the blink of an eye, “holes of despair” which had been appearing and growing in number and severity in our previously “safe vessel” are revealed. Holes to which we had turned a blind eye. Sometimes willfully. Sometimes out of naivete or inexperience. Our organization, our world is rocked. Perhaps we find ourselves standing on the precipice of financial disaster. We look around at those people whose views mirrored our own, people who also did not see the holes because they thought like us, acted like us, and we see fear, anxiety and confusion on their faces. Many times those people are looking solely inward, their first and primary thought being on self-preservation … on how they can save their own livelihood. They run for the nearest life boat.

Financial Armageddon awaits. As does our own destiny. And on the surface, it is not what we thought it would be. It was not what we had planned. We hope for a miracle. We hope for deliverance. We are facing Financial Armageddon.

Or are we? 

For most people, their own perception is their reality. We can see only the here and now. When we shun others, when we are not open to other people’s viewpoints and ideas our tribal mentality handicaps us and defines us in a very narrow manner. Fear of the unknown. Fear of new ideas. Fear of failure.

Financial Armageddon?

Or an opportunity to rise from the ashes of despair and boldly embrace new ideas that a previously unexplored path could provide?

Covid-19 has changed the global landscape in every possible manner. Educational institutions. Businesses, large and small. Entertainment. Dining. Travel. Life and Death.

Conferences and conventions in all major United States’ cities are being cancelled. The eating disorder community and industry are being hit hard by closures and cancellations. iaedp’s 2020 Symposium scheduled for March 26 – 29, 2020 was cancelled. The leaders of iaedp are attempting to devise a plan to reconstitute the Symposium virtually. Many obstacles and the realities of a fractured community weigh heavily against a successful implementation of that venture.

On March 14, 2020, the Eating Disorder Foundation cancelled or moved all support groups to a virtual format.

Beat and the Royal College of Psychiatrists’ Faculty of Eating Disorders announced that the Eating Disorders International Conference scheduled for March 18 – 19, 2020 at  the University of Strathclyde was cancelled.

The Eating Disorder Coalition Advocacy Day on the Hill scheduled for May 13, 2020 has been postponed to September 23, 2020.

It is likely that a number of NEDA walks will be cancelled.

AED’s annual international conference, ICED 2020, scheduled for early June 2020 in Sydney, Australia is clearly at risk. Cancellation or postponement of ICED 2020 may be inevitable since ordinarily, the cost and time expenditure to stage an international convention escalates as the date nears.

An uncertain future, fear, confusion, frustration for an industry. Except for that one organization, that first organization, which understands that all aspects of the future are uncertain and unknown. That organization will understand from adversity comes a greater opportunity to rethink past conduct. That organization will be willing to boldly explore new partnerships, more powerful collaborations and to embrace new ideas and new concepts.

That first forward thinking organization will understand that instead of harping on the discredited statistic, “95% of all diets fail,” and organizing petitions of protest that are as inane as they are ineffectual, it will explore ways to partner with the wellness industry. It will inspire the research professionals in both the eating disorder industry and wellness industry to work together to develop specialized eating plans that more thoroughly provide nutrition to the body, and the brain.

That first forward thinking organization will understand that instead of turning away in a belligerent and obtuse manner from the pharmaceutical industry, it will utilize its best and brightest minds to start collaborative studies with the research departments of pharmaceutical companies to research then implement a prescription drug regiment tailored to address the unique needs of those people who suffer from eating disorders.

That first forward thinking organization will understand that instead of ignoring the vast financial resources of Fortune 100 companies, it will find opportunities to introduce itself to those companies. It will convince those companies that the mission and vision of those companies mirror the vision and mission of that forward thinking organization. And should those Fortunate 100 companies truly embrace their own vision and mission, they will be not only furthering the vision of that forward thinking company but will also be acting in its own financial best interest.

That first forward thinking organization will understand that instead of relying on the handouts of a few private companies and foundations, it will understand that the Tax Reform Act of 2017 changed the rules, that public funding is too sparse and will find new revenue streams from its new collaborations and partnerships.

That first forward thinking organization will understand that it can no longer rely upon the corruption and ever changing winds in our Nation’s Capital to push forward ineffectual bills which statistically fail 94% of the time. Instead, it will find broader, more expansive marketing and advertising outlets and media such that its vision and mission are distributed to a vast audience.

Covid-19 has provided problems and issues of all type and manner which need to be addressed. Covid-19 has taken lives. Inevitably, Covid-19 will cause some businesses and persons into financial peril and then, bankruptcy. But, Covid-19 will also provide unprecedented opportunities. Opportunities for advancement, for growth, for success.

Opportunities for that one, that first forward thinking organization.

“We stood up for what was right. We fought for moral reasons … We sacrificed … We … cured diseases … We reached for the stars, and we acted like men. We aspired to intelligence; we didn’t belittle it; it didn’t make us feel inferior. We didn’t identify ourselves by who we voted for in the last election, and we didn’t scare so easy.”

            Jeff Daniels as Will McAvoy, Newsroom

The political system today in the United States is perhaps as fractured as it has ever been since the Civil War. The two major political parties, more concerned about perpetuating their own power, have lost sight of what was a far greater purpose. The ability to listen intelligently to issues which have the potential to increase the divisiveness, the ability to hear, to understand another person’s point of view is on life support. The ability to disagree on issues in a professional manner while still respecting the person who disagrees with you is becoming rare. Our politicians “personalize” disagreements on issues. If we disagree about the manner in which we address social or economic issues, then surely we must disagree about the substance of their soul. If you are not my friend agreeing on each and every point, you are my enemy.

Politicians obviously believe that the substance and conviction they believe they have on their own points of view are not substantive enough. They must also belittle and run down their opponents. Spirited, healthy, passionate debate on the issues is becoming a lost art. The focus now seems to be, “Elect me! I am the voice! Only I can lead us to a greater tomorrow!”

When was the last time you heard any politician say, “Believe in our shared vision. Believe in a tomorrow we can be proud of, a tomorrow of hope and promise. Our shared vision is the important thing. ”

Our political system is fractured. As we continue to personalize our political differences, as we allow our political views to define the very nature of who we are, we too suffer. Our unified voice as a nation is being muzzled. We are becoming known not for our collective might and vision, but our paralyzing dysfunction and divisiveness. Shrill voices crying out for attention while trumpeting their own self-importance distract the nation from our issues, worries and concerns.

Transparency, the integrity of our politicians, honesty, compassion, the ability to listen, learn and compromise in the spirit of a greater good are being lost. We allow fear to blind our collective vision.

Study after study show that people gravitate toward articles, issues and viewpoints which coincide with their own beliefs and points of view. We know what we know. Our own knowledge is safe. Since our point of view on a subject is bolstered by others who share that same point of view, then we must surely be correct and our perceived self-worth increases. We personalize our viewpoints. If you do not agree with my point of view, since my self-worth is now tied into that point of view, that means you obviously do not like or respect me personally. As a result, the divide widens, compromise is much more difficult and respect is lost.

Unfortunately, the eating disorder community is but a microcosm of our political system. And our children are the ones who suffer.

Disparate views breed contempt. A complete lack of transparency. Groups working in open opposition to other groups. Persons engaging in a concerted, shadowy campaign to slow down, undermine and destroy the work of other professionals, clinicians and doctors. Other Advocates, aware of that campaign of hatred, remaining silent.  And our children are the ones who suffer.

Personal agendas. Refusal to listen intelligently to viewpoints which differ from their own. Refusal to listen at all. Refusal to be open to change and evolution of treatment options and ideas. Refusal to explore collaboration with other healthcare industries and intelligent pharmaceutical intervention. And our children are the ones who suffer.

Our own fear dictating our course of action as the path we believe that is laid before us is blocked by our lack of vision and myopia. Our belief that only WE, and those who believe exactly as we believe, are the only ones who are right and all other voices must be extinguished. And our children are the ones who suffer.

We listen to our own fear. Our fear manifests itself as a growing and powerful voice in our head. Our fear seduces us. Our fear makes us believe that we are the only ones who are right! Our fear convinces us that everyone else is wrong and they are trying to hurt us! Our fear makes us believe that fear is truly our friend. Our only friend. Our fear will protect us. Our fear will guide us. Our fear will never let us down. Our fear wants to become one with us. Our fear wants to become us. Our fear tells us not to listen to anyone else.

And we start to believe our fear. Our fear becomes our friend, our lover. Our fear will never hurt us. We become our fear. And our fear becomes us.

And it is only after our fear has destroyed our ability to listen, to learn, to love, it is only after our fear defines who we are, it is only after we have become our fear to the exclusion of all else, that its true nature is then revealed.

All the time, our fear was nothing more than our eating disorder demon manifesting itself with a different mask. Seducing us. Continuing to destroy our soul. Claiming another victim. Another life. Another soul. Our fear is the greatest obstacle to progress. Our fear is another manifestation of this insidious demon. Our fear.

And our children are the ones who suffer.

So, one organization had the insight to designate the last week in February as  “Eating Disorder Awareness Week.” And good for them.  And for those in our insular community, we embrace it … as we rightly should.

During  this “eating disorder awareness week,” a dear, passionate, insightful lady took me to an upscale, French restaurant in North Dallas. The escargot, served NOT with garlic and butter as most French cuisine restaurants will, but instead, with a creamy, buttery sauce which accentuated the delicate texture of the escargot was nothing less than sublime. The Sancerre wine added to the complexity of the taste. This culinary explosion was followed by scallops served over truffle infused risotto. The lingering tastes created a lasting impression of the perfection of taste, scent and touch. And then …

The true cruelty of eating disorders hit home. Eating disorders take an experience that can give such pleasure, such joy to a person… and bastardizes it in the most perverse way. When we dine with  a loved one over a meal, when we share a meal, even if it is as simple as sharing “Kale Wednesday,” when we dare to share the joining of our emotions as expressed through a meal, we draw closer not just to that person, but we embrace their very essence with us. We express our eternal love for our mate. We laugh and cry with a person with whom our soul recognizes its counterpart in another. We dare to  laugh. We dare to cry. We dare to share.

But then, this insidious disease takes this incredible bonding experience, our love of the tastes and textures and love of food, … and bastardizes it in a most cruel and perverse way.

We fall in love when we dine with someone, we embrace a meal as a shared, joyful experience. We laugh. We love. We look into each other’s eyes, we look into our souls when we share a meal… and this disease turns that sacred experience into a cruel, deadly march to death. How dare it! And how dare we let our pale and shallow egos allow it to perpetuate its dance of death.

How dare we … How dare we …

The ghostly specter of eating disorders takes this loving, shared experience and turns it into a painful, hopeless march toward death. Each bite reiterating a macabre, agonizing and perhaps inexorable path toward the grave.

The taste of food, the taste of joy, the taste of life, being cruelly ripped from our loved one as it is thrown in their face. What should be one of their most joyful experiences turned into a sensation of pain and anguish.

And all the while, we as a community stand by helplessly and do very little. We put on our little walks. We raise money to perpetuate our own self-perceived importance. Some of our so-called leaders, so imprisoned by their own pain and anguish, intentionally raise obstructions to others in the industry. And yet, we then pat ourselves on the back as we shout from the tallest treetop that “we are raising awareness.” Meanwhile, our beloved children continue to die. And we as a community cannot even deign to speak their names aloud.

How dare we … How … dare … we.

Our beloved children and loved ones continue to die.  We are forced to lay our beloved children on the altar of the industry’s hubris. We have given the ultimate sacrifice. So, as we light our little buildings in shades of green and blue this week, let us never forget those incredible souls whose lives have been ripped from this world. Let us call out their names, loudly. Those are the army of Warrior Angels for whom we are fighting! Let us never forget them. And let us never forget the moms … and the dads.

Let us remember those souls who have to live the remainder of their days with the guilt, the anguish, the shame, the incredible pain that only a parent who has had the most precious thing they hold dear  ripped most cruelly from them have to endure each and every day … until their very last day.  How dare we not raise them up. How dare we not honor them. How dare we disregard them. How dare we disrespect them. They have paid the ultimate price.  They have made the ultimate sacrifice. They have paid with the dearest blood possible.  How dare we forget them.

How dare we. How dare we.

“An apology offered and, equally important, received is a step towards reconciliation and, sometimes, recompense. Without that process, hurts can rankle and fester and erupt into their own hatreds and wrongdoings.”

          Margaret MacMillan, Historian and professor, University of Oxford

“Forgiveness does not change the past, but it does enlarge the future.”

Paul Boese, Author and publisher

“The ability of a person to atone has always been the most remarkable of human features.”

           Leon Uris, Novelist

Eating Disorder Awareness Week is upon us. Once again. For those of us who have been impacted, and maybe even devastated by eating disorders, perhaps this next week is the best time to take stock of our own situation, outlook, views on the industry and … ourselves.

A number of people in the eating disorder community and industry hold to their belief that the eating disorder realm is more fractured, divided, and divisive than at any time before. Clinicians and research doctors failing to trust and collaborate. Advocates and activists alike advancing their own single causes to the exclusion of all else. Little transparency. Failure to communicate. Attributing false and nefarious motives to others who disagree with us. Not placing trust in others. Placing ones importance and ego over the importance of the messaging. Ignoring the families who are suffering from this insidious disease as we hide behind our hubris. Reliance on statistics which have no basis in fact.

Some have shaken their heads, despondent, wondering how we ever reached such a place. And they wonder how we can possibly get out of this dark pit of despair.

I am self-aware enough to know that I certainly do not have the answers or even a roadmap leading to a path of enlightenment. In fact, on some occasions I have unfortunately contributed to the dysfunctionality. But …

A number of life altering events have enveloped me since October 2019. First, on October 24, 2019, my father of 88 years passed away. He lived a full and complete life. And the last life lesson he taught his children was how to face your own mortality with grace, with strength, with courage, with dignity.

October 30, 2019 marked the third commemoration date of my beloved daughter, Morgan being taken by this disease. Significant dates are always very difficult for parents whose children have been ripped from life.

In mid-January 2020, I got to witness the coming to fruition of one man’s hopes, one man’s passion, one man’s belief in the fundamental goodness which exists within us all. I got to witness how one man, one man of intelligence, wisdom and courage, brought together some of the most renowned eating disorders experts to Dallas, Texas. They came because they were drawn by the purity of the message and a faith in a better tomorrow. For the many who did not get to hear his vision, his heart being put on display, his passion in his opening remarks, just know that this meeting was aptly named … and for the remaining time at this event, there was a feeling of hope, real hope.

About 10 days after this event ended, I was asked to participate in a videotaping. A dear friend had organized a small group of parents all of whom had had a child taken from them. The father who went right before me, his beautiful daughter had been taken in a tragic automobile accident in July 2019. She had suffered from addiction issues for years, issues which are believed to have contributed to her demise. Through my eyes I saw a father in agony, in such excruciating pain. And yet, this dad spoke so quickly, never looking at the camera or interviewer, trying to convince us in the room that he was ok, that he is counseling people on grief since “he is over it” and that he is training for a triathlon. It was at that point, that I knew that I was looking at myself over 3 years ago. This dark fog of despair clouding his judgment and self-awareness. His eyes darting around as if looking for a place to escape while all the while, denying the necessity or existence of such an escape. I was looking at a mirror image of who I was in a dark and foreboding place … a place to which, through the grace of God, the universe or whatever divine spirit you believe in, I was allowed to leave. To leave with a purpose. To leave with having my soul find me. Leave, yes. But, never forget.

On the heels of that revelation, came the discovery of a cruel, social media post imputing false and libelous actions which could be construed as being directed against me. Righteous indignation and anger coursed through me. I considered immediate legal action. And then? All of the events which had occurred since late October washed over me. And a realization that for those of us who have been impacted by this insidious disease, we all suffer pain in our own unique ways. With some people like me, the scars are open and obvious as they are with any parent whose beloved child has been forever taken. For others, those victims of eating disorders who still breathe, victims who still bare the horrible invisible scars left upon them in the wake of this damnable disease they must surely bare their own pain in their own way. We share this horrific bond. The bond of anguish and pain, pain left as a calling card as a result of this disease. And then came clarity. There was no need for retribution. But compassion. Compassion and love. Love as we are all loved by our parents and our eternal Father.

And perhaps that is from where the healing in the eating disorder community and industry must come … our own compassion, giving one’s self up for forgiveness, to apologize for past missteps. To bare one’s soul, openly and without shame. And when this realization came to me, there was no doubt in my mind where a start of the healing in the community and industry could possibly come from. I only needed to look into a mirror. Into my own heart. To acknowledge my own flaws and to make amends. As I surely must.

To those whom I have hurt through my writings, words or actions in the past three (3) years, I offer my most sincere and heartfelt apology. There will be no excuses. Excuses only serve to diminish the sincerity and depth of my apology. I have committed wrongs. And wrongs must surely be addressed.

But, a general apology is not enough. Specific acknowledgements must also be made. If we are to march bravely forward, we must first acknowledge where we have failed … and pledge never to so fail again. And so …

To Chase Bannister, for those times I have tried to belittle you, for those times I have not approached you as a professional and not acknowledged your passion in this cause, I apologize.

To Jillian Lampbert, for those times I have not seen the strength within you, your desire to do the right thing in incredibly trying circumstances, I am sorry.

To Dr. Ken Weiner, for those times when I was brutal in my analysis of your motives, for not acknowledging your desire to save many lives in the future, I apologize.

To Laura Collins Lyster-Mensh, for those times when I was personally harsh in my criticism. You are better than that. And my differences with your views could and should have been expressed in a kinder, more professional, productive manner. They weren’t. And I do apologize.

To Chevese Underhill Turner … for you, I have disagreed with a number of your views. But, I was not gracious, professional and respectful in expressing those views. You did not deserve that. Simply saying “I am sorry” does not seem adequate enough. I will strive to be better, to be more open, to seek common grounds so that collaboration and open communication is possible. Look within your heart. I do want the same thing as you… to help and save as many people as we possibly can.

To Karen Barton.

To those others in the eating disorder community and industry, those unnamed or unrevealed persons whom may have taken offense, I hope you find within your heart forgiveness and the willingness to embrace my intentions.

I will continue to write as surely I must. We may and undoubtedly will continue to disagree on some issues. For that, I will not apologize. But, before writing, I pledge to first approach you in a spirit of good will. And if you choose to approach me, you will be met with courtesy, professionalism and respect. We serve a common goal. We must together continue to strive to save lives. Of this we have no choice. But, going forward, from my part, I hope to be able to accomplish this must more intelligently, with a greater sense of understanding and compassion.

Unfortunately, I also know that it is an inevitable reality that I will continue to make some people in the eating disorder realm uncomfortable. For I represent the face of the failure of this industry and community. When a child dies and a parent is left behind, you will see that in my face. It is a grim reality.

A better future awaits us. We MUST find a path of compassion, of love, of forgiveness. Our beloved children are depending on us. We must be better. We must do better. We must have our actions be dictated from a place of faith, of hope. We must embrace our tomorrows with the promise that we will do better.

I know I will. In Morgan’s name. In Kelly’s name. In Erin’s name. In Heidi’s name. In Maggie’s name. In Kayleigh’s name. In the name of the thousands in the Army of Warrior Angels who are taken each year.

We must do better. We will do better.

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.