Legislation, Advocacy and Eating Disorders
Jeanine C. Cogan, Ph.D. is the founding Executive Director and current Policy Director of the Eating Disorders Coalition for Research, Policy & Action. Her policy career began in 1996 when she was awarded the James Marshall Public Policy Fellowship. In 1998 she received an additional highly competitive policy award from the American Psychological Association (APA) as a Science Congressional Fellow where she worked for a Member of Congress. In this role, she conceptualized and wrote a federal bill, the Patient Freedom of Restraint Act, which led to the promulgation of new regulations. In 2000 Dr. Cogan was awarded Fellow status in a division of APA for her outstanding contributions in psychology and public policy. In 2004 she received “Wings of Hope” from Ophelia’s Place for inspiring others to make a difference through advocacy. She was the National Honoree for her efforts in educating Congress about eating disorders in 2005 from the HEED Foundation.
Legislation, Advocacy and Eating Disorders
The Eating Disorders Coalition for Research, Policy & Action (EDC) is the non-profit organization working to advance the federal recognition of eating disorders as a public health priority. Through education, lobbying and advocacy efforts we promote policies that address the problems faced by people with eating disorders, and that may prevent further people from developing eating disorders. We are a coalition of more than 35 organizations in the eating disorders education, prevention, and treatment communities and represent millions of people impacted by eating disorders and their families, providers, researchers and advocates.
In this article we highlight two efforts currently underway.
HOLDING INSURANCE COMPANIES ACCOUNTABLE
The Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act of 2008 (“Parity Act”) was passed in order to improve access to care for people suffering from mental illness. Yet the Administration has still not provided the final rules, which offer clear guidance to insurance companies and consumers as to how to appropriately implement the parity law. Without the final rules to provide more direction on proper implementation, many people with eating disorders are still being denied the mental health care to which they are entitled.
The EDC advocated long and hard for the passage of a strong parity law so we find the continued and consistent stonewalling tactics and inappropriate denials by insurance companies for eating disorders treatment a betrayal. Consequences of not receiving necessary health insurance coverage include:
- Financial ruin for families paying out of pocket
- Lack of life saving care, which leads to the worsening of symptoms
- In some cases, death
Parity promised that limits on mental health and addiction coverage wouldn’t be any more restrictive than medical/surgical coverage. This “leveling of the playing field” was supposed to bring equity to benefits across conditions, whether those conditions originate in the foot or the brain yet in reality, there are now more restrictive limits for mental health.
Insurance companies apply more restrictive limits on the scope and duration of treatment for mental health and substance use disorder (SUD) and restrictive limits particular to eating disorders treatment include:
- Arbitrary treatment day limits
- Lack of transparency regarding the medical decision making criteria used
- Mid-course denial of benefits
- Unequal application of authorization requirements
Since the passage of the Parity Act in 2008, many people with eating disorders still face denials of life saving treatment from insurance companies for common and essential types of treatments like residential inpatient care.
Often treatment teams and patients request authorization for a level of care clinically indicated by nationally accepted care guidelines, only to be told by the insurance company that the patient does not meet the level of care guidelines established by the insurance company. One rationale for denying care by insurance plans is that their policies state that certain mental health treatments such as residential care have no “medical analogy,” meaning that these treatments are not the same as or are not comparable to other medical/surgical treatments.
According to the nationally recognized law firm of Patton Boggs, the mental health parity statute is clear that limits on the scope and duration of treatment must be applied no more restrictively in the mental health benefit than in the medical/surgical benefit. The statute defines treatment limitations as “limits on the frequency of treatment, number of visits, days of coverage, or other similar limits on the scope or duration of treatment.”
Not complying with the parity regulations is a calculated effort to avoid costs at the expense of people’s health and lives. Treatment should be determined by the treating professional based on severity and type of illness, rather than what is arbitrarily allowed by an individual’s insurance company.
The EDC is actively pushing HHS to offer more specific and concrete guidance to insurance companies so that people with eating disorders get they care they are entitled to.
In one such effort we worked with Senator Tammy Baldwin on a letter to Secretary Sebelius urging her to clarify in the final rules that plans may not apply limits to the scope of treatment for eating disorders any more restrictively than in the medical/surgical benefit. Ten additional Senators added their signature to this letter: Harkin, Franken, Rockefeller, Klobuchar, Wyden, Lautenberg, Blumenthal, Gillibrand, Warren and Schumer. In a second effort we are working with the Representatives Deutch, Hank Johnson and Hastings to send a letter to HHS from the House. We have the following Congress Member’s signatures so far: Conyers, Schwartz, Frankel, Ellison, Rangel, Engel, and Polis.
What You Can Do:
We can use your help with getting additional Members to sign on to the letter and the EDC’s asks you to please contact your Member of Congress.
To contact your Representative:
1. Go to www.house.gov and enter your zip code in the box that says ‘Find My Representative’
2. Once you do that you’ll see your Member’s information come up, click on the little envelope icon under your Member’s name to contact them. If for some reason this doesn’t work, go directly to their page and click on the ‘Contact Me’ link. That should take you to a web form for emailing the Member.
3. Please send them a message urging them to sign on to this letter. We’ve included a template below, feel free to use this, customize it, or send your own.
“My name is __(enter name)_ and I live in ___(city)__ in your District. I am contacting you to ask that you sign on to a letter to HHS Secretary Sebelius to request clear language that ensures greater access to life-saving care for Americans with eating disorders in the final rules for the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act of 2008 (aka “parity”). This letter is being sent by Representatives Hank Johnson, Alcee Hastings, and Ted Deutch. Unfortunately even since the passage of federal parity, many people with eating disorders are being denied coverage in violation of the parity law.
I care about this issue because ________.
Please sign on to this important letter. I look forward to hearing back from you. Thank you.”
**If you are not getting the care that you are entitled to, EDC needs to hear from you.** Please contact Melanie Morris, EDC’s Policy and Communication’s Consultant at firstname.lastname@example.org. The EDC will assist you with analyzing if you’ve had a parity violation and with writing your insurance commissioner and contacting your Member of Congress.
FEDERAL RESPONSE TO ELIMINATE EATING DISORDERS ACT (FREED ACT)
EDC’s flagship legislative effort is the FREED Act; a comprehensive bill on eating disorders addressing research, education, prevention and treatment. Our lead sponsor in the House for the FREED Act is Ted Deutch from Florida.
Together we have been working to encourage Representatives to be original cosponsors of the FREED Act this session. Current cosponsors include: Conyers, Moran, Hastings, Carolyn McCarthy, Schwartz, Wasserman Schultz, Ellison, Hank Johnson, Connolly, Pingree, Polis, Nolan, Murphy, and Frankel.
What the bill achieves:
Research Initiatives: Fund a research agenda in order to:
- Know the numbers. 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 treatment, hospitalizations, costs of medical and psychiatric comorbidities, (cost to family, cost to society) etc.
- Better understand the etiology of eating disorders and effective treatments.
- Provide training opportunities for new researchers.
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).
- Addressing eating disorders in the Schools. Programs to train educators on effective eating disorders screening, detection, prevention and appropriate methods of assistance. Programs to improve the identification of students with eating disorders and increasing student and parent awareness of eating disorders.
- 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.
Increase 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.
- are 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.
- Eating disorders treatment made accessible to people of low income by including eating disorder treatment to the services covered by Medicaid. The bill also requires that children covered by Medicaid be screened for eating disorders.
- Advocacy support for those who are sick. The bill includes a Patient Advocacy Program where individuals needing care have support navigating insurance and receiving the treatment they need.
What You Can Do
Again, contact your Member of Congress and ask her or him to cosponsor the FREED Act. (Follow the instructions mentioned earlier for how to contact your Senator)
Thank you for adding your voice to these important efforts. Members of Congress need to hear from those of you who care about binge eating disorder!