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The EDC's Legislative Work

We passed eating disorders legislation into law: 

  • Anna Westin Act Passage
    • In 2015, the bipartisan Anna Westin Act (H.R. 2515/S.1865) was introduced in the House and Senate. 
    • The Anna Westin Act was written to help those affected by eating disorders through improved health care professional training and clarity of mental health parity. 
    • In 2016, several provisions from the original bill text were integrated into the 21st Century Cures Act (P.L. 114-255) and passed into law. This passage marked the first federal eating disorders legislation passed into law - a milestone for our community.
    • Sections 13005, 13006, and 13007 were part of the final bill package, which included: 
      • The U.S. Department of Health and Human Services Office of Women's Health updating published information on eating disorders, incorporating public resources into its obesity prevention programs, and advancing public awareness of eating disorders. 
      • Allows the Department of Health and Human Services to facilitate the identification of model programs and materials for allowing and training health professionals on eating disorders. 
      • Enhancing education and training on eating disorders for health professionals in an effort to provide early intervention services, appropriate referrals, and treatment services. 
  • Enhanced education and training for health professionals has culminated in the establishment of the National Center of Excellence for Eating Disorders (NCEED), located at the University of North Carolina, Chapel Hill through a multi-year grant through the Substance Abuse and Mental Health Services Administration (SAMHSA).  
  • The EDC also helped pass the Mental Health Parity bill. EDC lobbied hard and was, in part, responsible for a stronger version of the parity bill. EDC Board Member Kitty Westin testified at a Congressional hearing and spoke at a press conference.

We introduced new bills:

  • We introduced the bipartisan Anna Westin Act of 2015 in both the House and Senate (H.R. 2515; S. 1865)
  • We introduced and garnered support for the first comprehensive eating disorder bill in the history of Congress, The Federal Response to Eliminate Eating Disorders Act (FREED Act; 2009, 2010, 2011, 2012, 2014). We had 51 House Members sign on as cosponsors with bipartisan support, and we had 7 Senators sign onto the Senate version. We had the most powerful Member of the HELP committee as the lead sponsor of the FREED Act, Senator Tom Harkin. In the House, the co-chair of the Congressional Caucus on Eating Disorders, Congresswoman Nita Lowey, was a cosponsor of the bill.
  • House Resolution 531 (encouraged increased public awareness of eating disorders; 2004)
  • Promoting Healthy Eating Behaviors in Youth Act with Hilary Clinton (2002)

We improved existing bills:

  • We got eating disorders included in the IMPACT Act (an obesity bill)
  • We added a research component to the Eating Disorders Awareness, Prevention, and Education Act

The EDC has influenced policy behind the scenes

We succeeded in getting language into:

  • A Senate FY 2013 funding bill for federally financed health research that urges National Institutes of Health (NIH) to expand, intensify, and coordinate its research on eating disorders and to examine the possibility of creating collaborative consortia on eating disorders research. This initiative holds out the prospect of attaining two key EDC goals: the first is greater attention to and the coordination of eating disorders research across nine NIH who possess active research portfolios in this area; the second is increased support for federal Centers of Excellence in eating disorders research at academic medical centers and universities in the United States.
  • The Labor HHS Spending bill that required the CDC to calculate mortality rates for eating disorders. This resulted in data being published online and EDC researchers meeting with CDC to address the problems with getting accurate mortality data.
  • The House report of the mental health parity bill that would have defined mental health in a way that clearly included eating disorders. This language did not make it into the final version of the bill, which passed the Senate (in part because parity was added as an amendment to a bill that was moving through the Senate).

EDC also worked with Members of Congress to write a Congressional sign-on letter urging Michelle Obama’s "Let's Move" campaign to expand its message to also address eating disorders. Thirty-five Members of Congress signed onto the letter and we garnered the support of over forty organizations.

The EDC has influenced federal agencies

Centers for Disease Control and Prevention (CDC)

  • In 2014, we worked with Congressman Ted Deutch’s (D-FL) to initiate a “Dear Colleague letter” addressed to CDC regarding concerns with BMI screening practices in schools. As a result of our advocacy, 24 Members of Congress signed onto the final letter, and CDC agreed to immediately begin making changes to school BMI measurement procedures. More information about how we took action and how the CDC responded can be found on our blog.

Department of Health and Human Services (HHS)

  • We used our Congressional connections to have Members of Congress communicate with stakeholders at HHS that eating disorders need to be a key part of the essential health benefits. Senator Harkin, Congressman Kennedy and Congresswoman Baldwin each wrote a letter or had a conversation with Secretary Sebelius to communicate this message.
  • We communicated directly with HHS to recommend that eating disorders and residential care be specifically included and that medical necessity be defined broadly in the essential health benefits (EHB). We had more than two-hundred advocates write HHS urging the same.
  • We worked in a coalition with more than one hundred other mental health organizations, the Whole Health Coalition, to urge HHS to include residential treatment in EHB.
  • We worked with HHS to communicate to people about Pre-Existing Conditions Insurance Plans (PCIPs) and made sure both eating disorders and residential treatment were included in the PCIPs.
  • We joined scholars, advocates and advisors for a convening on March 29 hosted by the U.S. Department of Health and Human Services, Office of Women’s Health (HHS/OWH) entitled, “How to Talk About Healthy Weight and Healthy Eating: A Cross-Disciplinary Dialogue on Messaging to Promote Healthy Behaviors and Positive Body Image”. This meeting served as the latest iteration in implementation of the EDC’s flagship legislation—Anna Westin Act, which passed in 21st Century Cures (P.L. 114-255). An executive summary of the meeting can be found here, and a full report can be found here.

I am proud that, from its inception, I have been a part of the EDC and the gains we have made in increasing awareness, improving access to care, educating the public and influencing lawmakers. As the founder of the country’s first residential eating disorder treatment facility, I am thrilled that the EDC’s mission to raise recognition about the serious nature of eating disorders, not only a national level but a global one, is being accomplished.”

– Sam Menaged, EDC Board Member, The Renfrew Center