Advocacy Organizations


Some individuals that have completed their eating disorder recovery transition back into their life without strong connection to the wider eating disorder recovery community, while others find satisfaction in staying connected to the community, and contributing to advocacy efforts.

While it can be inspiring to learn about efforts to support eating disorder advocacy, it is recommended an individual wait at least one year and obtain solid recovery experience before getting involved in those efforts. This delay will strengthen both the individual and the quality of “giving back” they can offer down the line. Families and loved ones, recover your own strength and energy first!. When you are ready, here are some advocacy organizations that are focused on legislation that you can be involved with.

Eating Disorder Coalition

The Eating Disorders Coalition (EDC) strives to advance the recognition of eating disorders as a public health priority throughout the United States. A majority of their focus is on educating and working with Congress in an effort to influence federal policy. Their goals as follows:

  • Raise awareness among policy makers and the public at large about the serious health risks posed by eating disorders
  • Promote federal support for improved access to care
  • Increase resources for education, prevention and improved training
  • Increase funding and support for scientific research on the etiology, prevention and treatment of eating disorders
  • Promote initiatives that support the healthy development of children
  • Mobilize concerned citizens to advocate on behalf of people with eating disorders, their families and professionals in the field

In order to reach these goals, the EDC utilizes  a variety of tactics including advocating, educating members of congress, raising visibility among communities, surveying past and current efforts and lastly, using social media. There are two main routes the EDC takes to address eating disorder policies at the federal level. The first is incorporating eating disorders into initiatives that already exist and the second is to introduce new bills that improve the lives of those affected by eating disorders. Since the Anna Westin Act was passed within the 21st Century Cures Act, the EDC been working with legislators and key federal agencies to ensure its implementation. This year the EDC also advocated to prevent the repeal of the Affordable Care Act and to protect Essential Health Benefits and Medicaid coverage. Among our accomplishments in 2017, the EDC:

  • First Eating Disorders Regulatory FAQs: Achieved the first regulatory FAQs clarifying that eating disorders are a mental illness and must be treated at parity with medical/surgical conditions. This FAQ was followed-up with by in-depth regulatory comments from the EDC in September 2017.
  • Two Capitol Hill Advocacy Days: Organized two Capitol Hill Advocacy Days, which brought hundreds of individuals to Washington, D.C. to advocate.
  • Bipartisan, Bicameral Letter to HHS on 21st Century Cures: Secured a 54- Member House of Representatives and Senate bipartisan letter to the U.S. Health & Human Services Administration urging the full implementation of the eating disorders provisions within 21st Century Cures
  • Harvard Mental Health Parity & Eating Disorders Panel: Co-sponsored a panel discussion on eating disorders and Mental Health Parity in partnership with the Strategic Training Initiative for the Prevention of Eating Disorders (STRIPED) and the Harvard T.H. Chan School of Public Health’s Social and Behavioral Sciences department and Mental Health Student Alliance
  • HHS Updated Fact Sheets and Additional Recommendations: Advocated for HHS to update eating disorders factsheets on anorexia nervosa, binge eating disorder, and bulimia nervosa (updated in June 2017), and submitted a memorandum to the Office of Women’s Health (OWH) to recommend additional updates for their eating disorders fact sheets and online information
  • Regulatory Listening Session Comments on Mental Health Parity: Presented written and oral comments on strategies for improving Parity for mental health and substance use disorder at a public listening session
  • Bipartisan, Bicameral Letter to CDC on Eating Disorders: Achieved the support of sixty-five bipartisan Members in the House and Senate to urge for the re-inclusion and inclusion of surveillance questions on eating disorders within CDC national surveillance systems
  • Congressional Briefing with ADA on Health Professionals Intervention: Hosted a Congressional briefing in partnership with the American Dental Association on the importance of early identification of eating disorders by health professionals in the medical/surgical industry and the need for implementation of the Cures Act by the U.S. Department of Health and Human Services (HHS)
  • EDC Panelist on Stabilizing the Affordable Care Act: EDC Policy Director Katrina Velasquez spoke on a panel with small business organizations,
  • Partnered with HHS on the May Women’s Health Week: Partnered with HHS’ OWH to encourage healthy women and included a Huffington Post article on eating disorders recovery from EDC Board Member Johanna Kandel
  • Secured $3-$5M in FY 2017 Eating Disorders Research: Secured between $3-$5 million in eating disorders research from the Department of Defense Peer- Reviewed Medical Research Program
  • Led a HHS Public Listening Session on Health Professionals Identification & Intervention: On October 4, 2017, the EDC and experts participated in a public listening session with HHS’ SAMHSA, OWH, AHRQ, NIMH, HRSA and the Veterans Administration to discuss implementing Section 13006 of CURES. Later discussions included the follow-up recommendations to HHS on how to implement CURES
  • Virtual Action Days: Coordinated two virtual action days and multiple action alerts in 2017. In the spring, advocates called, tweeted, and shared Facebook posts to support increased research funding for eating disorders in the military and the implementation of the eating disorders provisions of the 21st Century Cures Act. In the fall, advocates asked their Members of Congress to support a letter to the CDC to include/re-include eating disorders-related question in their national surveillance systems and for the creation of a Congressionally- recognized National Eating Disorders Awareness week. Advocates from across the country participated in action alerts led by the EDC on tax reform, Affordable Care Act repeal efforts, including the Graham-Cassidy bill and the Better Care Reconciliation Act in both the House and Senate, Medicaid expansion, and the DOD Congressionally Directed Medical Research Program (CDMRP).

In 2018, the Eating Disorders Coalition will 

  • Continue the rulemaking process on the 21st Century Cures Act, including enforcing mental health parity rules, educating medical professionals about eating disorders and working with the Office on Women’s Health to update their materials
  • Work to establish a Congressional study on eating disorders among military 
servicemembers 
We look forward to further advancing the recognition of eating disorders as a public health priority in the upcoming year. With your support in 2018, the eating disorders provisions within the Cures Act can be prioritized and properly implemented, so that our health professionals can be trained to identify eating disorders early and individuals suffering from eating disorders will have greater access to treatment.

Other Policy Efforts by the EDC

  • Worked with The White House Mental Health and Substance Use Disorder Task Force in 2016
  • Oppose Mandatory BMI testing in the schools
  • Clarify Parity for Eating Disorders Coverage
  • Influenced the Implementation of the Affordability Care Act (ACA). The act that expands health insurance coverage for Americans through state health insurance exchanges for individuals and small businesses, and through an expansion of Medicaid for low-income individuals and families
  • Increased NIH Funding in 2012
  • Initiated the Hold Insurance Companies Accountable (HICA) Campaign
  • Challenged Obesity Initiatives
  • Improved existing bills such as the IMPACT Act (an obesity bill) and the Eating Disorders Awareness, Prevention and Education Act
  • Introduced the following new bills:
    • House Resolution 513: encouraged increased public awareness of eating disorders, 2004
    • Promoting Healthy Eating Behaviors in Youth Act with Hilary Clinton, 2002

Residential Eating Disorders Consortium (REDC)

Formed in 2011, The Residential Eating Disorders Consortium (REDC) serves as a professional association of residential eating disorder treatment providers. It is REDC’s mission to collaboratively address issues impacting residential treatment programs in an effort to increase access to residential eating disorder treatment for individuals who are struggling with eating disorders. To be eligible for a membership, your organization must provide residential treatment and follow the established standards put in place by REDC. As a condition of membership in REDC, a residential eating disorder treatment program agrees to:

  • Conduct medical / nursing, psychological, psychiatric and nutritional assessments within 72 hours of admission
  • Maintain appropriate licensure per applicable law
  • Maintain continuous clinical staffing by licensed staff or trainees under the direct supervision of licensed staff
  • Provide a multidisciplinary team treatment approach with psychiatric, psychotherapeutic, nutritional and medical staff
  • Complete a multidisciplinary treatment plan within one week of admission
  • Provide weekly (at minimum) visits by each member of the treatment team
  • Ensure supervision of residents 24-hours a day by trained program staff
  • Ensure medical and nursing staff accessibility 24-hours a day
  • Ensure supervision of all meals and snacks by trained program staff
  • Communicate a thorough discharge plan to resident, family and receiving team upon discharge, after necessary permission to release information is obtained
  • Admit only patients the program can adequately treat given medical and nursing resources
  • Maintain accreditation by Joint Commission or CARF, meeting or exceeding the eating disorder specific accreditation standards

Residential Eating Disorder Treatment Accreditation:  The REDC Standards Committee has also been working with the AED Credentialing Task Force to partner with an accreditation agency to implement the AED Credentialing Task Force “Clinical Practice Recommendations for Residential and Inpatient Eating Disorder Treatment”. Two accreditation agencies have incorporated these eating disorder standards into their accreditation programs, The Joint Commission and the Commission on Accreditation of Rehabilitative Facilities (CARF). All REDC members are accredited by CARF or Joint Commission.

 

The Affordable Care Act

The Patient Protection and Affordable Care Act (ACA) was signed into law on March 23, 2010, and its constitutionality was upheld by the Supreme Court in June 2012. The ACA provides Essential Health Benefits including mental health and chronic illness and other benefits:

  • Allows children to remain on parents policy until age 26
  • Insurance companies cannot deny coverage for pre-existing condition
  • Insurance policies cannot have exclusions for specified conditions
  • Insurance policies cannot discriminate based on geography, facility type or provider specialty – includes both benefits and provider fees
  • Insurance company required to provide specific criteria used for medical necessity determination
  • Disallows differences in non-quantitative treatment limitations and requires parity for intermediate levels of care
  • Eliminates lifetime maximums

Our Mission

Providing critical resources and support to those navigating a loved one's path to full recovery from an eating disorder