The Practice & Ethics of Eating Disorders Advocacy

“Transparency is critical in public health and epidemics; laypeople become either effective force-multipliers or stubborn walls.”

            – T.K. Naliaka, Author

The overarching purpose of access to information … is to facilitate democracy. It does so in two related ways. It helps to ensure first, that citizens have the information required to participate meaningfully in the democratic process, and secondly, that politicians and bureaucrats remain accountable to the citizenry.”

            – Gerard LaForest, Justice, Supreme Court of Canada (1997)

Once again, the EDC Capitol Hill Advocacy Day is upon us, this year scheduled for May 7, 2019. For $30 and if you can afford to pay your own transportation, lodging, and travel expenses to Washington, D.C., you have the opportunity to participate in this day. So, what exactly does that day consist of and what is the agenda being pursued? Therein lies the question … and the conundrum.

Ostensibly, The Eating Disorder Coalition (“EDC”) is the lobbying arm of the eating disorder industry and acts as a liaison with politicians. The EDC lists some of its goals as promoting federal support for improved access to care, increase funding and support for scientific research on etiology, prevention and treatment of eating disorders and mobilizing concerned citizens on behalf of people with eating disorders, their families and professionals in the field.

The current president of the EDC is Chase Bannister. At an eating disorder organization event this past weekend, Mr. Bannister was the co-presenter on a session entitled “We the People: The Practice & Ethics of Eating Disorders Advocacy.” This organization noted, “In this keynote session, participants will learn how clinicians, individuals in recovery, and loved ones join forces to help influence public awareness and public policy as it relates to early-intervention, access to care, and treatment of eating disorders. Participants will learn a history of advocacy in the field of eating disorders, the ethical imperative for advocacy by clinical providers, and forward-looking pathways to engagement, including: • Connecting with local, regional, and national coalitions missioned to increase public awareness of eating disorders illnesses • Participating in state and federal lobbying efforts by writing to and meeting with legislators, policy makers, and federal agencies, with the intent to educate public officials on the severity of eating disorders illness, the impoverished research environment, and the importance of increased treatment and early-intervention resources and • Collaborating with other clinicians and the recovery community to use personal experience as fuel for fundamental grassroots change.”

All very noble and worthwhile goals and policy statements on what the EDC does or purports to do. And now, what an incredible opportunity Mr. Bannister has to put into action, words he very likely used at that conference. Especially since at no other time has the mandate for transparency been more crucial and necessary than now.

The Affordable Care Act is on life support and is unlikely to survive. It has been systematically stripped of some of its important provisions through Executive Orders,  court decisions, and people leaving the program. The Mental Health Parity Act of 2008 has been exposed as more fraud than friend. The Wit decision showcased the manner in which insurance providers sacrifice lives for profiteering. And finally, the feckless politicians in our Nation’s Capitol are solely concerned about increasing the power of their own party at the expense of the needs of the Republic.

This years EDC Capitol Hill Advocacy Day provides the EDC with the opportunity to demonstrate the manner in which it intends to adapt to this ever changing landscape, to specifically advise those it purports to represent, i.e., families about the specific bills it intends to pursue in the future and the reasons supporting those decisions. And just as importantly, to identify its large, financial backers and the amounts contributed by those shadowy figures.

The Healthcare System in the US is Shattered

Saying the healthcare system in the United States is broken does not adequately describe the existing chaos. The system is shattered. The problems are legion. Many of the issues in the system today are new and constantly evolving. Some of the issues were brought about by past incompetence and/or lack of vision. Shaking our fists at the clouds as we loudly chant the mantra of, “Mental Health Parity” or “Affordable Care Act” or “You children get off my lawn!” does not address nor provide solutions to the current issues.

The Affordable Care Act was an inartfully drafted, constitutionally infirm yet well-intentioned law designed to address some of the on-going problems in the healthcare industry. Some of the more well-known provisions included abolishing pre-existing conditions and allowing children to stay on their parent’s health insurance until age 26. It was also designed to slow the rise of health care costs, and required all insurance plans to cover ten (10) essential health benefits, including mental health, addictions and chronic diseases. And yet, no matter how well intentioned a law is, we are first and foremost, a nation of laws with the United States Constitution as the cornerstone of our Democratic Republic form of government. And an unconstitutional law, no matter how well intentioned cannot stand.

The Affordable Care Act barely survived its first constitutionally based challenge culminating in a narrow 5 – 4 decision from the US Supreme Court in 2012. The Court was fragmented on most of the major issues. But, the key issue, the issue that allowed the Affordable Care Act to survive, was that the individual mandate (requiring citizens to pay a penalty if they did not have insurance) constituted a valid exercise of Congressional authority under its right to levy taxes. Without that finding, the US Supreme Court in all likelihood would have found the Affordable Care Act unconstitutional in 2012. The Court certainly found other aspects of the Act were unconstitutional and cast them aside.

But, the die was cast. The Tax Reform Act of 2017 removed the individual mandate from the Act. This resulted in litigation being filed in a federal district court in Texas. Relying upon the legal reasoning and language used by the Supreme Court in 2012, the Texas court struck down the Affordable Care Act in its entirety in December 2018. The case is currently on appeal before the 5th Circuit Court of Appeals before it winds up again before the US Supreme Court. The narrow thread which previously saved it was severed by Congress and the end result is readily predictable.

There is no Parity in Mental Health Parity

To exacerbate the current climate, mental health parity has been exposed for what it really is. On its face, the Mental Health Parity Act was designed to prevent group health insurance plans and health insurance companies whose policies provide mental health benefits from imposing less favorable benefit limitations on mental health benefits than on medical/surgical benefits. In 2017, two studies indicated that mental health parity exists mostly in name only. One industrial official stated, “In the wake of these two reports, it is clear that we simply do not have mental health and addiction parity in this country as our law and policy dictate we should.” He later said, “These analyses show a pattern of insurers avoiding their obligations and then unfairly blaming mental health and addiction treatment providers for the problem of lack of care delivery.”

The Wit case revealed the manner in which insurance companies evade their duties and responsibilities under the Parity Act. As long as insurance companies have the sole and absolute privilege of drafting and implementing their own guidelines in insurance policies there will be no parity. And there are only two ways to change that reality … through the court system or through legislative action.

The Clown Show in D.C.

The health, safety and welfare of it citizenry is a noble trust possessed by federal and state governments. And yet, wise collaborative legislation designed to help people first attain and then keep that status is seemingly beyond the imagination of those pale shadows currently occupying the highest echelons of political office.

The lust for increasing the power of their own party predominates. Ignoring the healthcare crisis and refusing to explore any new legislation until after the next election is just as insidious as proposing ridiculous healthcare plans which violate the very basis of the foundation of our Republic, which are financially impossible to achieve and which were mere publicity stunts.

And like two children playing in the sand box who end up throwing mud pies at each other, both Republicans and Democrats alike are ignoring the reality that our cemeteries are being needlessly filled by those whose lives were taken because they could not afford potentially life saving care.

This is the current situation facing lobbyists in our Nation’s Capitol. This is the current situation facing EDC.

Where is EDC going?

Because of these, and many other reasons, the people who are spending their time and money to come to Washington for Advocacy Day should be apprised of the specific bills EDC has handsomely paid a lobbyist to pursue in the past and the manner in which EDC’s outlook is necessarily evolving with the changing times.

Now, I have the ability to locate and interpret the Quarterly Lobby Reporting Forms, (or LD-2 Reports) that the lobbyist employed by EDC is required to file as a matter of public record. But, hopefully Mr. Bannister will embrace the opportunity to educate the people coming to D.C. for EDC’s Advocacy Day before they arrive so they will have a chance to conduct their own research into the specific bills. I am equally confident that EDC will widely publish this information across various social media outlets. After all, Mr. Bannister just spoke about ethics in advocacy on April 13.

Along these lines, we welcome Mr. Bannister to identify the large financial contributors to EDC who make it possible for EDC to pay a lobbyist in excess of $100,000 annually. The EDC is a 501(c)(4) organization. As a 501(c)(4) organization, EDC can spend an unlimited amount of money on politics without having to disclose its donations. And yet, it is axiomatic that entities will only contribute large amounts of money for political purposes if their own agendas are being pursued.

This is certainly in keeping with transparency and ethics in advocacy. Qualities that Mr. Bannister surely embraces. So for the benefit of those who at their own expense are coming to EDC Advocacy Day, for the benefit of those families who are so impacted by this disease, for the benefit of the eating disorder industry and community, request is made that EDC and Mr. Bannister educate all of those groups with the information respectfully requested … before Advocacy Day.

As a final aside, on March 26, in a press release the EDC stated the following: “It is unconscionable that the Trump Administration would not only fail to support a law that provides health coverage for millions of American families, but also not have an alternative plan in place,” said EDC Board President Chase Bannister. “On May 7th, advocates from across the United States will arrive in Washington, D.C. for the EDC Capitol Hill Advocacy Day, and there is no question this will be on our legislative agenda—voicing our support for the ACA and its importance for those in our community.” “Despite the efforts of the Trump Administration to undermine the health care of Americans …”

If the EDC’s agenda consists of supporting a law that is on life support and which has been steadily eroded since its inception and in antagonizing the White House and the party which controls the US Senate, which in turn, controls the federal court system, the EDC may wish to rethink its agenda, its purpose and the people it claims to represent. Unless of course, that agenda is solely set by the big money entities which keep the EDC alive.

We eagerly await the EDC informing us as to the bills, the reasons those bills are being pursued and information regarding its financial structure.

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