RESEARCH FUNDING EVERYWHERE AND NONE OF IT FOR US

Shepherding a bill through Congress, from introduction through being enacted into law is incredibly difficult. Between 2001 and 2015, nearly 74,500 bills were introduced in Congress. However, only 2,345 became law. This equates to approximately four percent (4%). That number is actually high when you consider bills that become law are often changed, sometimes materially, from their introduction to passage.

If bills you support, like the Nutrition Care Act (H.R. 3711), the Serve Act (H.R. 27670) or the Eating Disorders Prevention in Schools Act (H.R. 6703) are not signed into law during a legislative session, when a new Congress is seated in January of odd numbered years, your bill dies. Bills need to be reintroduced anew, are renumbered and the process begins again. That process is daunting and complicated. That was apparent even back in 1976 when Schoolhouse Rock first aired its iconic, “I’m Just a Bill” episode.

As for eating disorders, enactment of bills into law is non-existent. Introduction of bills which emphasize research into eating disorders has been completely abandoned. And yet, that in and of itself is curious since all persons recognize that in order to diagnose and properly treat this illness, the highest priority must be research.

In September 2019, EDCoalition president, Chase Bannister, made the following remarks before the National Institute of Mental Health National Advisory Mental Health Council:

“This mortality rate underscores the severity of this illness, as it is common for individuals with eating disorders to have co-occurring medical and behavioral health conditions, increasing the complexities of proper intervention and treatment.”

“Proper intervention and treatment for any condition requires an investment in research.”

“Amongst all psychiatric conditions, … funding for eating disorder research remains among the most discrepant from the burden of illness they represent.”

“Meaningful progress in eating disorders treatment and intervention will only by realized to the extent we meaningfully invest in its science.”

That same day, the ED Coalition issued a press release stating in material part: “For too long, research funding for eating disorders has been an order of magnitude away from what’s necessary. Meaningful progress in eating disorders treatment and intervention will only be realized to the extent we meaningfully invest in its science. We call upon NIH – and all who make or shape policy – to invest in eating disorders research. To do what’s necessary.”

With this universal understanding, it is particularly perplexing to see that bills emphasizing funding for the research of eating disorders have been completely abandoned by the EDCoalition. The last such bill was introduced in Congress in 2013. Eight (8) long years ago. And that is perplexing and is the basis for many questions which need to be asked … and transparently answered. Answers we know that will never be voluntarily forthcoming.

First, appropriations for funding of research of mental health issues are usually submitted through the National Institute of Mental Health (“NIMH”). NIMH makes funding requests to be included in the annual federal Appropriations Bill. Without its passage, federal programs are not funded and government run agencies and organizations cease to operate.

Prior to the 2021 Appropriations Bill being signed in late December of 2020, NIMH submitted to the United States Senate an “Explanatory Statement for Departments of Labor, Health and Human Services, and Education and Related Agencies Appropriations Bill, 2021 Summary of Budget Estimates and Committee Recommendations for Fiscal Year 2021.” This was a  281 page document. The document made requests and recommendations regarding funding research for mental health issues to be included in the 2021 Appropriations Bill.  For example, requests were made for the following:

$300 million increase for Alzheimer’s and dementia research funding at the National Institutes of Health (NIH), including $15 million to fund and implement the BOLD Infrastructure for Alzheimer’s Act (P.L. 115-406), and advances the Improving HOPE for Alzheimer’s Act (S. 880/H.R. 1873);

$8.48 billion for the National Science Foundation (NSF), with $6.91 billion (a $169 million [2.5%] increase) dedicated to research and related activities. 

$6.015 billion for Substance Abuse & Mental Health Services Administration (SAMHSA) an increase of $133 million which includes:

  • $757.5 million for the community mental health services block grant, including a NEW $35 million block grant set-aside for crisis services, a NAMI priority;
    • $24 million for the National Suicide Prevention Lifeline, an increase of $5 million

$500,000,000 to the National Institutes of Health for research related to opioid addiction, development of opioid alternatives, pain management, and addiction treatment at the National Institute of Neurological Diseases and Stroke and the National Institute on Drug Abuse.

$52,344,000 for Autism and Other Developmental Disorders program for this program which supports surveillance, early detection, education, and intervention activities on autism and other developmental disorders, as reauthorized in the Autism Collaboration, Accountability, Research, Education and Support [Autism CARES] Act of 2019 (Public Law 116–60).

$41,619,000 for University Centers for Excellence in Developmental Disabilities for the University Centers for Excellence in Developmental Disabilities, a network of 67 centers that are interdisciplinary education, research, and public service units of a university system or public or nonprofit entities associated with universities.

As for eating disorders? In this 281 page Recommendation Report, the only reference to eating disorders appears on page 115 and states as follows:

Eating Disorders.—The Committee commends NIH for supporting multi-Institute research on the chronic, fatal, and serious mental illnesses encompassing eating disorders that affect 30,000,000 Americans during their lifetimes, and its association with other conditions such as diabetes, infertility, heart disease, post-traumatic stress disorder, substance use, polycystic ovary syndrome, and tooth decay. The Committee recognizes that eating disorders are a deadly bio-psycho-social illness and that multiple research topics must be explored to understand, prevent, and treat eating disorders, including psychosocial issues; health disparities and food insecurity; environmental factors such as weight stigma; the complex interplay of metabolic processes; and maternal health. The Committee encourages NIH to continue to support a multi-Institute approach and to report on current research efforts related to the prevention, diagnosis, and treatment of eating disorders in the fiscal year 2022.” [emphasis added]

No specific funding recommendation.

No recommendation for specific grants or grant amounts.

No recommendation for a financial commitment.

No specific funding for research into the biological and genetic causes of eating disorders.

Although the Committee stated that it commended NIH for supporting multi-Institute research on the chronic, fatal, and serious mental illness known as eating disorders it did not recommend any specific funds be appropriated for research.

So where did this language come from? [Apologies for ending a question with a preposition.] A little digging results in the answer to this question. This language came from a March 2020 letter addressed to the Chair and the Ranking Member of the Committee on Appropriations Subcommittee on Labor, Health & Human Services and Related Agencies. The letter was signed by forty-three (43) Congresspersons. A copy of that letter is attached here:

Despite the fact that this letter contains no requests for funding of research, I am confident that our friends at the EDCoalition stood on the sidelines, and as is their wont, “applauded or praised” this worthy endeavor.

But once again, a mental health illness which is believed to impact nine percent (9%) 0f the United States population is excluded from specific federal funding.

A mental health illness which is believed to result in one death every fifty-two (52) minutes is excluded from specific federal funding.

Admissions from the EDCoalition that “meaningful progress in eating disorders treatment and intervention will only be realized to the extent we meaningfully invest in its science.” And yet no research based bills are pursued by that organization which presumably results, in part, in NIMH making no specific financial recommendations for eating disorder research in fiscal year 2021.

On the other hand, those Congressional bills which have a four percent (4%) or less chance of being passed and which, even if passed, will not impact research, await! The death toll rises. And even still, there is no demand for accountability.

In the next article, we will explore the “Congressional Scorecard of the EDCoalition,” apply it to the EDCoalition and look at what the future may hold.

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