Why People with Eating Disorders Need Mental Health Parity Now: A Matter of Life or Death.

High prevalence rate. Nine million Americans suffer from eating disorders. Eating disorders cut across race, color, gender and socioeconomic categories. No one is immune.

On the rise and affecting children. The incidence of eating disorders has doubled since the 1960s and is increasing in younger age groups, in children as young as seven. Eating disorders often begin in adolescence and are associated with substantial psychological problems, including depression, substance abuse, and suicide.

Impact on health. Eating disorders are among the top four leading causes of burden of disease in terms of life lost through disability or death. Eating disorders are commonly associated with substantial psychological problems, including depression, substance abuse, and all too frequently with suicide. They also can lead to major medical complications, including cardiac arrhythmia, cognitive impairment, osteoporosis, infertility, and most seriously death.

High death rate. Anorexia nervosa has the highest mortality rate of all mental disorders. One study reported an 11-fold increase in the risk of death for individuals with anorexia compared to those without anorexia.

Treatment can work. Research shows that eating disorders can be successfully overcome with early detection and adequate and appropriate treatment. Such treatments are typically extensive and long-term. Yet less than half of people with eating disorders access treatment.

Public support for parity. According to a nation wide poll commissioned by the National Eating Disorders Association, three out of four Americans believe eating disorders should be covered by insurance companies just like any other illness. A majority of Americans (66%) believe that the government should require insurance companies to cover treatment of eating disorders.

Require health insurance companies to reimburse for eating disorder treatment. Insurance companies routinely limit the number of days they will reimburse for treatment of eating disorders, which force doctors to discharge patients with anorexia nervosa too early. Although patients with eating disorders typically require more than 6 weeks (42 days or more) of inpatient therapy for proper recovery, insurance companies typically offer an average of 10 –15 days a year. Early discharge is associated with relapse and death.

We are thrilled Congress passed mental health parity in October 2008.

Summary of State Parity Laws that include eating disorders as of 2007

In total 20 states (40%) have state parity laws that include eating disorders. The remaining 30 states (60%) do not have laws that ensure health insurance reimbursement for the treatment of eating disorders. We need H.R. 1424 to cover those people.

Of the 43 states that have parity laws:
* 17 states (40%) have a broad based definition of diagnoses included in their parity laws. Eating disorders are covered by these17 states:
 AZ, AR, CT, GA, IN, KY, ME, MD, MN, MO, NM, NC, OR, RI, TN, VT, WA
* 26 states (60%) only include serious mental illness in their parity laws. Serious mental illness is defined as schizophrenia, schizoaffective disorder, psychotic disorders, bipolar disorder, major depression, panic disorders, and obsessive compulsive disorder. Of those 26 states 14 of them include one or more additional diagnoses. Of those, 3 states (12%) explicitly include anorexia and bulimia (NH, NY & WV).
* Eating disorders are covered in only 12% of parity laws with serious mental illness as a definition whereas they are covered in 100% of parity laws with a broad based definition of diagnoses.

Federal Response to Eliminate Eating Disorders Act

A comprehensive eating disorders bill conceptualized and drafted with input from dozens of eating disorder organizations around the country.  Among the many initiatives this bill will address include: creating Centers of Excellence to fill the current gap in eating disorders research, improving training of health and school professionals to appropriately identify and respond to eating disorders, and requiring insurance companies to reimburse for eating disorders treatment on par with physical illnesses.

The EDC worked with Members of Congress to conceptualize and draft the Federal Response to Eliminate Eating Disorders (the FREED Act), which is a comprehensive bill on eating disorders addressing research, treatment, education and prevention. The bill addresses the following:

Research Initiatives
- Know the numbers through a national data base and other initiatives. Determine the prevalence, incidence, and correlates of all eating disorders (anorexia nervosa, bulimia nervosa, binge eating disorder and eating disorder not otherwise specified).
- Know the death rates. Determine the morbidity and mortality rates associated with all eating disorders and provide a public report of this data annually.
- Know the costs or “economic burden” of eating disorders. Undertake the necessary investigations to conduct an economic analysis of the costs of eating disorders in the United States, including years of productive life lost, missed days of work, reduced work productivity, costs of medical/psychiatric treatment, prescriptions medications, hospitalizations, costs of medical and psychiatric comorbidities, (cost to family, cost to society) etc.
- Establish Centers of Excellence. Develop an integrated system of Centers of Excellence for eating disorders, which will provide training opportunities for research, fund research programs, and coordinate the development of a research infrastructure nationwide.

Access to Adequate and Appropriate Treatment
- All Americans with eating disorders deserve access to care. Any insurer that provides health coverage for physical illness must provide coverage for eating disorders.
- Care according to universally accepted criteria. Insurers are to follow standards of care as written in the Practice Guidelines for the Treatment of Patients with Eating Disorders by the American Psychiatric Association.
- The treatment setting must be appropriate to the patient’s needs and clinical presentation. Decisions regarding the treatment setting must include individual variables such as age, sex, ability to manage severity or co-morbidity, family involvement, and staff expertise and training.
- Eating Disorders are complex conditions and require comprehensive treatment approaches. All treatment modalities should be covered, including but not limited to family, individual and group therapies, nutrition counseling, psychopharmacology, body Image therapy, and medical treatment.

Education & Prevention Initiatives
- Study mandatory BMI reporting in school. Determine the outcome of measuring BMI in schools and reporting the results to parents (including measuring eating disorders symptoms, and incidence of teasing or bullying based on body size).
- Grant Program of the Education and Training for all Health Professionals. Train health professionals, to identify, prevent, appropriately treat and address the complications of eating disorders (using a team approach).
- Grant Program for the Education and Training for School/Higher Education Professionals. Train education professionals in evidence-based education programs about eating disorders, education professionals include teachers, professors, school nurses, school aides, community liaisons, cooks, dieticians, social workers, counselors, coaches, athletic departments, and other.
- Educating the public through Public Service Announcements (PSAs). Use PSAs to educate the public on types and the seriousness of (prevalence, comorbidities, health consequences –both physical and mental) eating disorders, how to obtain help, discrimination and bullying based on mental illness, body size, and the effects of media on self esteem and body image.
- Bring eating disorders into already existing obesity initiatives. Federally funded campaigns to fight obesity should also address eating disorders. Federal studies should include eating disorder related questions.

The Eating Disorders Coalition for Research, Policy & Action is a cooperative of professional and advocacy-based organizations committed to federal advocacy on behalf of people with eating disorders, their families, and professionals working with these populations.

Federal policy goals:

1. Increase resources for research, education, prevention, and improved training.
2. Promote federal support for improved access to care.
3. Promote the national awareness of eating disorders as a public health problem.
4. Promote initiatives that support the healthy development of children.

The Alliance for Eating Disorders Awareness is a proud member of The EDC!

Lobby Day 2009

Get active!

Capitol Hill is the place for
eating disorder advocacy in April!
The Eating Disorders Coalition is hosting our biggest-ever EDC Lobby Day, plus we're offering a Congressional Briefing.
Join us in April as we launch the Federal Response to Eliminate Eating Disorders Act. The FREED Act is comprehensive eating disorders legislation to promote research, treatment, and education and prevention programs.

Wednesday, April 1

Basic Training
4-6 PM
St. Mark's Episcopal Church, Parish Hall
3rd & A St SE, Washington DC 20003 
Basic Training is required for all first-time advocates. You will learn about public policy, about how Congress makes laws, and you will review what Congress and the government has done - or not done - about eating disorders. If you have participated in a previous EDC Lobby Day, this session is optional.

Meet and Greet Social
7-9 PM
National Criminal Justice Association
720 7th Street, NW, Third Floor
Washington, DC  20001
Join us for an informal "meet and greet" social featuring light snacks and other refreshments. The social takes place immediately after EDC Lobby Day Basic Training. Everyone registered for EDC Lobby Day is welcome.

Thursday, April 2
Message Training
9-11 AM
St. Mark's Episcopal Church, Parish Hall
3rd & A St SE, Washington DC 20003 
Message Training is REQUIRED of everyone joining us for this EDC Lobby Day. You will review the talking points for the day and will practice your messages with your EDC Lobby Day team members. If you miss this brief session, you will not know your specific points nor your role in the team. A light breakfast will be served prior to Message Training.

EDC Lobby Day
11:30 AM - 3:30 PM
U.S. Capitol Complex

At the U.S. Capitol, you will work in teams meeting with elected officials and their staff. No one will lobby alone. Lobby teams will arrive for each appointment, deliver a packet of materials, and talk about how Congress can help.
To end the day, we will gather for a Congressional Briefing to discuss the FREED Act. Members of Congress and the media will also be invited to the briefing.

Congressional Briefing, The FREED ACT
A Federal Response to Eliminate Eating Disorders
4-5 PM
Rayburn House Office Building Room 2105
U.S. Capitol Complex

The EDC, in cooperation with Rep. Patrick Kennedy (D-RI), invites you to attend a Congressional Briefing, The FREED ACT, a Federal Response to Eliminate Eating Disorders. You will learn about a new comprehensive eating disorders bill to address research, treatment, and prevention services.