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Healthcare
Advocacy
Individuals suffering from eating disorders are faced with the reality that at present, there are few treatment options with proven efficacy, too few clinicians trained in the treatment of eating disorders, and an enormous amount of public stigma.
Effective awareness efforts emphasize educating healthcare policymakers about the prevalence of eating disorders, their increasing frequency, diversity, and expansion across all socioeconomic classes and ethnic populations, and their negative health effects. The Harris Center is involved in advocacy efforts at the national and state levels.
Eating Disorders Coalition
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Dr. Herzog Accepting EDC Award for Visionary Leadership, 2005 |
In 2000, the Harris Center founded the Eating Disorders Coalition for Research, Policy & Action (EDC) in Washington, D.C. The EDC is a group of professional organizations committed to raising national awareness of eating disorders and to improving access to care, parity and research. During its first 11 eleven years, the EDC has grown its membership significantly, hosted two national policy conferences, played a key role in the passing of improved mental health parity legislation, and launched the FREED Act (Federal Response to Eliminate Eating Disorders), comprehensive legislation addressing eating disorders research, treatment and prevention.
Congressional Briefings
One of the EDC's roles is to educate Congress members about the need for legislation on behalf of eating disorders. To this end, the EDC hosts frequent Congressional Briefings. Attended by legislators and their aides, each briefing consists of a series of presentations organized around a specific theme, such as Addressing Eating Disorders through the
Federal Response to Eliminate Eating Disorders Act (April 12, 2011) or The Federal Response to Eliminate Eating Disorders Act: How Congress Will Save Lives By Passing this Bill (September 30, 2010). Briefings offer personal accounts of recovery as well as facts and research about these illnesses.
Family & Friends Action Network
Founded in 2001, the Family & Friends Action Network is the internal advocacy arm of the Coalition. Individuals, families and friends who have been impacted by eating disorders assemble from across the country to promote legislation on behalf of these illnesses. Drawing on their personal experiences, these advocates play a vital role in educating policy makers on Capitol Hill about eating disorders. Members of the network include parents who have lost a child to an eating disorder, individuals in recovery, and those with active eating disorders, as well as professionals working in the field of eating disorders.
Paul Wellstone and Pete Domenici Mental Health Parity & Addiction Equity Act of 2008
Historically, mental illnesses have received far less insurance coverage than "physical" illnesses in the United States. Since its inception, the EDC—alongside a number of other professional and advocacy-based organizations—has worked toward insurance reform that places coverage for mental illnesses on par with that provided for medical-surgical conditions. The passing of the Paul Wellstone and Pete Domenici Mental Health Parity & Addiction Equity Act of 2008 (MHPAEA) represented notable progress.
According to the MHPAEA, group health plans of over 50 employees that offer mental health coverage must grant the same level of benefit to mental disorders as to medical-surgical illnesses. Although the MHPAEA does not explicitly include eating disorders, it represents a stepping stone toward insurance reform that will offer full treatment for these serious illnesses. For information about the implementation of this statute, please consult the American Psychiatric Association's Mental Health Parity Watch.
What is the FREED Act?
The EDC is working hard to promote the FREED Act (Federal Response to Eliminate Eating Disorders), the first comprehensive eating disorder bill ever submitted to Congress. Developed with input from eating disorder experts across the country, and introduced on March 3, 2011 by Senators Tom Harkin, Amy Klobuchar, and Al Franken, FREED will:
- Establish Centers of Excellence to promote eating disorder research nationwide
- Expand professional training in the recognition, treatment and prevention of eating disorders
- Increase the public's understanding of eating disorders
- Require health insurers to cover eating disorders on par with medical-surgical illnesses
On April 12, 2011 the EDC hosted National Lobby Day. Advocates gathered on Capitol Hill from all parts of the country and visited one Congressional office after another, sharing their personal stories, describing FREED, and explaining why federal policies on eating disorders are needed. Another highlight of the day was a Congressional Briefing at which a panel of distinguished speakers presented educational information about eating disorders and emphasized the importance of these disorders to the national healthcare agenda.
To keep the momentum going, the EDC will hold another advocacy program on October 4, 2011.
Eating Disorders and Mental Health Parity in Massachusetts
Historically, Massachusetts, among other states, provided far less insurance coverage for mental illnesses than for those illnesses deemed to be "physical."
Change has been gradual, but unmistakeable. July 1, 2009 marked a major breakthrough as Chapter 256, An Act Relative to Mental Health Parity went into effect. Under this statute, a fully-insured health plan must provide coverage for an eating disorder at the same level of benefit as it provides for medical conditions. A health plan cannot impose an arbitrary limit (such as 60 inpatient days or 24 outpatient visits) on treatment for an eating disorder unless there is also such a limit on the treatment of medical conditions. However, a health plan may still limit coverage to treatment that is "medically necessary."
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Representative Kay Khan |
Chapter 256 is important, not only because it improves access to care for eating disorders, but also because it helps set the stage for even stronger legislation.
For several years, the Harris Center has served as a consultant to Representative Kay Khan, as she has initiated legislation on behalf of individuals with eating disorders. On January 20, 2011 Rep. Khan submitted H. 1187, an Act providing for certain standards in health care insurance coverage (a refile of H. 989 filed in the 2009-2010 Legislative Session). If passed, H. 1187 will curb the tendency of health insurance companies to deny payment once a patient with an eating disorder becomes medically stable. This will ensure that patients with anorexia nervosa, bulimia nervosa and eating disorder not otherwise specified receive the comprehensive treatment necessary to improve their health.
David B. Herzog, M.D. has spoken at a number of state house hearings over the past few years to educate policy makers about the severity of eating disorders and to emphasize why Rep. Khan’s bill is crucial to getting patients the care they need. Please stay tuned to our Web site for information about how you can help us support this bill, which is currently under review by the Joint Committee on Financial Services, chaired by Representative Michael A. Costello.
Also exciting is Chapter 197, An Act Relative to School Nutrition, which was approved by Governor Patrick on July 30, 2010. This law requires healthier foods in schools and includes an amendment authored by Rep. Khan providing education for public school nurses about early identification of students with eating disorders and appropriate interventions.
Click to view:
The Biological Basis of Anorexia Nervosa
The Biological Basis of Bulimia Nervosa
The Biological Basis of Eating Disorder Not Otherwise Specified (EDNOS)
Harlick v. Blue Shield of California
In 2006, Jeanene Harlick, who had struggled with anorexia nervosa for many years, entered a residential treatment facility recommended by her physicians. Ms. Harlick's insurer, Blue Shield of California, denied payment for the treatment, claiming that her policy did not cover residential care.
Ms. Harlick's attorneys challenged Blue Shield's denial in front of the United States Court of Appeals for the Ninth Circuit. On August 26, 2011, the Court found in favor of Ms. Harlick and ruled that California's Mental Health Parity Act required Blue Shield to pay for her care at the residential treatment facility. This decision
is important in that it serves as a stepping stone to comprehensive care for everyone who suffers from an eating disorder.
Advocating for Eating Disorders: Suggested Reading:
A qualitative study of perceived social barriers to care for eating disorders: perspectives from ethnically diverse health care consumers
Becker, A.E., Hadley Arrindell, A., Perloe, A., Fay, K., Striegel-Moore, R.H. A qualitative study of perceived social barriers to care for eating disorders: perspectives from ethnically diverse health care consumers. International Journal of Eating Disorders. 2010; 43: 633-47.
Barriers to treatment for eating disorders among ethnically diverse women
Cachelin, F.M., Rebeck, R., Veisel, C., Striegel-Moore, R.H.
Barriers to treatment for eating disorders among ethnically diverse women. Internatinal Journal of Eating Disorders. 2001; 30:
269-78.
Help seeking and barriers to treatment in a community sample of Mexican American and European American women with eating disorders
Cachelin, F.M., Striegel-Moore, R.H. Help seeking and barriers to treatment in a community sample of Mexican American and European American women with eating disorders. International Journal of Eating Disorders. 2006; 39: 154-61.
Federal advocacy for anorexia nervosa: An American model
Cogan, J.C., Franko, D.L., Hezog, D.B. Federal advocacy for anorexia nervosa: An American model. International Journal of Eating Disorders. 2005; 37: S101-S102.
A randomised controlled multicentre trial of treatments for adolescent anorexia nervosa including assessment of cost-effectiveness and patient acceptability - the TOUCAN trial
Gowers, S.G., Clark, A.F., Roberts, C., Byford, S., Barrett, B., Griffiths, A., Edwards, V., Bryan, C., Smethurst, N., Rowlands, L., Roots P.
A randomised controlled multicentre trial of treatments for adolescent anorexia nervosa including assessment of cost-effectiveness and patient acceptability - the TOUCAN trial. Health Technology Assessment. 2010; 14: 1-98.
Cost-effectiveness of guided self-help treatment for recurrent binge eating
Lynch, F.L., Striegel-Moore, R.H., Dickerson, J.F., Perrin, N., Debar, L., Wilson, G.T., Kraemer, H.C.
Cost-effectiveness of guided self-help treatment for recurrent binge eating. Journal of Consulting and Clinical Psychology. 2010; 78: 322-33.
Health services research in anorexia nervosa
Striegel-Moore, R.H.
Health services research in anorexia nervosa. International Journal of Eating Disorders. 2005; 37 Suppl: S31-4; discussion S41-2.
Health services use in eating disorders
Striegel-Moore, R.H., DeBar, L., Wilson, G.T., Dickerson, J., Rosselli, F., Perrin, N., Lynch, F., Kraemer, H.C.
Health services use in eating disorders. Psychological Medicine. 2008; 38: 1465-74.
Health services use in women with a history of bulimia nervosa or binge eating disorder
Striegel-Moore, R.H., Dohm, F.A., Kraemer, H.C., Schreiber, G.B., Crawford, P.B., Daniels, S.R.
Health services use in women with a history of bulimia nervosa or binge eating disorder. International Journal of Eating Disorders. 2005; 37: 11-8.
One-year use and cost of inpatient and outpatient services among female and male patients with an eating disorder: evidence from a national database of health insurance claims
Striegel-Moore, R.H., Leslie, D., Petrill, S.A., Garvin, V., Rosenheck, R.A. One-year use and cost of inpatient and outpatient services among female and male patients with an eating disorder: evidence from a national database of health insurance claims. International Journal of Eating Disorders. 2000; 27: 381-9.
The economic effect of planet health on preventing bulimia nervosa
Wang, L.Y., Nichols, L.P., Austin, S.B. The economic effect of planet health on preventing bulimia nervosa.
Archives of Pediatrics & Adolescent Medicine. 2011; 165: 756-62.
Photo Credits
Anti-stigma banner
Dr. Herzog Accepting EDC Award: Eating Disorders Coalition
Capitol building
Kay Khan: Reprinted with Rep. Khan's permission
This page was last updated on August 28, 2011.
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