The Death of Priorities

Vexilla Regis Prodeunt Inferni.”

            Dante Alighieri, The Divine Comedy, Canto XXXIV

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

            2 Samuel 1:27 (King James Version)

The FREED Act of 2009

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

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

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

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

A copy of the Bill is attached here:

2009 FREED Act

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

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

The FREED Act of 2011

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

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

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

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

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

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

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

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

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

A copy of the Bill is attached here:

2011 FREED Act

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

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

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

The FREED Act of 2013

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

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

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

A copy of the Bill is attached here:

2013 FREED Act

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

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

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

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

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

2015 Legislation

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

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

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

Attached is the 2015 bill:

2015 Act

What Changed?

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

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

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

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

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

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

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

 

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