Friday, February 19, 2010

NEDAW Action Alert from EDC!


National Eating Disorder Awareness Week (NEDAW 2010)??

Host a letter-signing campaign for the EDC to support the FREED Act!!
Set up a table in a common area on your campus and ask students to email their Member of Congress urging their support for the Federal Response to Eliminate Eating Disorders (FREED) Act. The FREED Act is the first comprehensive bill in the history of Congress to address eating disorders!!

*******What you need? A computer, internet access, and a few hours of your time!!

*******How to do it? It only takes 3 simple steps!!

STEP 1: ~ Find Out the Student's Member of Congress:

**Go to:
**Enter zip code of person wishing to send letter

**Ta da! You have the Representative's name

STEP 2: ~ Compose Letter:

**Using the sample letter below ask student to adapt the letter putting his or her name and contact info and writing it to either Congresswoman or Congressman depending on who she or he is.


Your Name

Your Street Address

Your City, State, Zip

Your telephone number and email address


The Honorable First Name Last Name (Your Representative)

United States House of Representatives

Washington, DC 20515

Dear Congressman/Congresswoman____________ (last name in the blank)

As a constituent of your district who has personally been impacted by eating disorders, I am writing today to ask you to cosponsor the Federal Response to Eliminate Eating Disorders Act, (the FREED Act, H.R. 1193). The FREED Act is the first comprehensive eating disorders bill in the history of Congress. The bill focuses on research, treatment, education and prevention of eating disorders and serves as a beacon of hope for the millions of people in our country currently suffering from binge eating disorder, anorexia, bulimia, and eating disorder not otherwise specified (EDNOS).

At lowest estimate, 9 million American women and 1 million American men suffer from anorexia, bulimia, and EDNOS. It is estimated that between 2-5% of the American population suffers with binge eating disorder. Eating disorders affect every single system of the body and are associated with serious medical complications including cardiac arrhythmia, cognitive impairment, osteoporosis, infertility, heart failure and death. In fact, left untreated anorexia nervosa has the highest death rate of all mental disorders, at upwards of 20%. However, when a person suffering from anorexia receives proper treatment, the death rate falls to between just 2-3%.

Research demonstrates that eating disorders CAN be successfully overcome when early detection and adequate and appropriate treatment take place. Unfortunately, at this point in time, eating disorders are all too often undiagnosed or completely misdiagnosed by health professionals, and access to treatment is limited. Less than 1/2 of all people with eating disorders receive the treatment they both need and deserve.

The FREED Act will save lives by providing for better access to proper treatment, research dollars to better understand the etiology and effective treatment of eating disorders, grant programs to ensure more medical health professionals and school personnel be trained on eating disorders prevention and treatment, as well as PSA's to broaden awareness of eating disorders.

Currently the FREED Act has bipartisan support with 27 cosponors. I want to urge you to also sign on as a cosponsor of the FREED Act (HR 1193) today. The FREED Act would have significantly changed my life and could have saved thousands of lives before now. I look forward to hearing from you soon.

Warm regards,

First and Last Name

STEP 3: ~ Send Letter Via Email:

**Go to the Member of Congress's website.

**(Most offices allow you to email your letter directly from their website

**Cut and paste the adapted letter into their email.


STEP 4: ~ Let us know your results:

**Send the EDC a note telling us how many students wrote letters and to which offices.
Email with that info.

Thanks so much! The more letters Members of Congress receive the more support for this bill. Let's get it passed this session!

Thursday, February 11, 2010

With Parity, Do We Still NEED the FREED Act?

Many of you reading this have been involved in advocacy with the Eating Disorders Coalition "through the years" as we advocated for the passage of "Mental Health Parity". Those of you familiar with the bill know that the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act PASSED on October 3, 2008!! And those of you who have advocated with the EDC for the passage of "Mental Health Parity" know just what an enormous victory this was for those affected by mental illness. In short, the mental health parity legislation that was signed into law provides equity between medical/surgical benefits and mental health and addiction benefits (in health care plans that already offer mental health coverage), and many "loopholes" from the previous 1996 Parity Act were closed.

Yesterday we posted a blog that shared a summary of the "Parity Regulations" (they were just released on February 2, 2010). ~ We are thrilled with what the regulations assert. And we know that millions WILL benefit from the wise decision of Congress to pass, and the President to sign into law, the
Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act ("MH Parity").

While we deeply support the MH parity bill that passed, we know that there is still much to be done to assure that those affected by eating and body image disorders receive fair and equitable treatment, and coverage of that treatment. You see, in the MH Parity bill that passed, eating disorders are still not specifically covered, as well as, eating disorders can actually still be excluded from insurance plans.

That is why we need you, now more than ever, to come to our EDC Lobby Day in April to advocate for the FREED Act!! (register here:

Mental Health Parity passed after years of dedicated and persistent advocacy, strength in numbers, and the ultimate display of courage those affected by mental illness demonstrated time and time again by coming forward to the Hill to advocate for EQUAL TREATMENT and an end to discrimination against them for suffering a mental health illness. It is time for those affected by eating and body image disorders (including parents, care-givers, treatment providers, sufferers, friends, family, etc.) to COME forward in bold numbers and in collective voice to advocate for the FREED Act!! Without YOUR voice, we are less visible, and we risk what happens when those who suffer are silent: nothing. We can no longer afford to be silent about these deadly and life-devastating disorders --any of you who work in the field or who are affected day in and day out by these insidious disorders know that we can no longer remain silent. The avenue to raising the issue of eating disorders on the Federal level is the FREED Act. YOU CAN make a difference in helping to pass FREED! We need you to help make a difference --please don't assume that others will come to Lobby Day and you don't need to be there. We need every voice --including yours! ~ Again, you can register for Lobby Day at:

If you have any questions about Lobby Day or the FREED Act, please do not hesitate to contact me or any of the EDC staff. ~ I hope to see you each on the Hill in April. The FREED Act needs you! ~ peace from snowy DC, Kathleen

A Brief Summary of the FREED Act:
When passed into law, the FREED Act will benefit those affected by eating disorders in three major and necessary ways --through Research, Treatment and Education and Prevention Initiatives.

In brief, the FREED Act (HR 1193) provides for:
Research 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: 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)); establish a Grant Program for 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); establish a 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; educate 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, and federal studies should include eating disorder related questions).
(to read the entirety of the bill, please go to: and enter bill number HR1193)

Monday, February 1, 2010

Obama Administration Issues Rules Requiring Parity in Treatment of Mental, Substance Use Disorders

Friday, January 29, 2010

Contact: HHS: 202-690-6145,
DOL: 202-693-8666,
Treasury: 202-622-2960

Paul Wellstone, Pete Domenici Parity Act Prohibits Discrimination

The Departments of Health and Human Services, Labor and the Treasury today jointly issued new rules providing parity for consumers enrolled in group health plans who need treatment for mental health or substance use disorders.

“The rules we are issuing today will, for the first time, help assure that those diagnosed with these debilitating and sometimes life-threatening disorders will not suffer needless or arbitrary limits on their care,” said Secretary Sebelius. “I applaud the long-standing and bipartisan effort that made these important new protections possible.”

“Today’s rules will bring needed relief to families faced with meeting the cost of obtaining mental health and substance abuse services,” said U.S. Secretary of Labor Hilda L. Solis. “The benefits will give these Americans access to greatly needed medical treatment, which will better allow them to participate fully in society. That’s not just sound policy, it’s the right thing to do.”

“Workers covered by group health plans who need mental health and substance abuse care deserve fair treatment,” said Deputy Treasury Secretary Neal Wolin. “These rules expand on existing protections to ensure that people don't face unnecessary barriers to the treatment they need.”

The new rules prohibit group health insurance plans—typically offered by employers—from restricting access to care by limiting benefits and requiring higher patient costs than those that apply to general medical or surgical benefits. The rules implement the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act of 2008 (MHPAEA).

MHPAEA greatly expands on an earlier law, the Mental Health Parity Act of 1996 which required parity only in aggregate lifetime and annual dollar limits between the categories of benefits and did not extend to substance use disorder benefits.

The new law requires that any group health plan that includes mental health and substance use disorder benefits along with standard medical and surgical coverage must treat them equally in terms of out-of-pocket costs, benefit limits and practices such as prior authorization and utilization review. These practices must be based on the same level of scientific evidence used by the insurer for medical and surgical benefits. For example, a plan may not apply separate deductibles for treatment related to mental health or substance use disorders and medical or surgical benefits—they must be calculated as one limit. MHPAEA applies to employers with 50 or more workers whose group health plan chooses to offer mental health or substance use disorder benefits. The new rules are effective for plan years beginning on or after July 1, 2010.

The Wellstone-Domenici Act is named for two dominant figures in the quest for equal treatment of benefits. The late Senator Paul Wellstone (D-MN), who was a vocal advocate for parity throughout his Senate career, sponsored the ultimately successful full parity act. He was joined by former Senator Pete Domenici (R-NM) who first introduced legislation to require parity in 1992. Champions of the legislation also included the bipartisan team of Representative Patrick Kennedy (D-RI) and former Representative Jim Ramstad (R-MN).

The issue of parity dates back over 40 years to President John F. Kennedy, and was also supported by President Clinton and the late Senator Edward Kennedy.

The interim final rules released today were developed based on the departments' review of more than 400 public comments on how the parity rule should be written. Comments on the interim final rules are still being solicited. Sections where further comments are being specifically sought include so-called “non quantitative” treatment limits such as those that pertain to the scope and duration of covered benefits, how covered drugs are determined (formularies), and the coverage of step-therapies. Comments are also being specifically requested on the regulation’s section on “scope of benefits” or continuum of care.

Comments on the interim final regulation are due 90 days after the publication date. Comments may be emailed to the federal rulemaking portal at: Comments directed to HHS should include the file code CMS-4140-IFC. Comments to the Department of Labor should be identified by RIN 1210-AB30. Comments to the Treasury’s Internal Revenue Service should be identified by REG-120692-09. Comments may be sent to any of the three departments and will be shared with the other departments. Please do not submit duplicates.