Great Letter from Advocate

Hi everyone --below is a letter from EDC advocate Rebekkah, to her Representative (Member of Congress in the House). Please take a look at her letter to see an example of how to personalize the Eating Disorders Coalition's "sample letter". We're looking forward to receiving many more cc'd letters in our inbox. We need millions more to write in if we want to pass the FREED Act. 
Go to: http://www.eatingdisorderscoalition.org/letter-writing-campaign.htm
for information on how you can write a letter, too! ~ Thank you, the EDC


____________________________________________________________________

Dear Congressman Heck,

As a constituent of your district who has personally suffered from the living hell of an eating disorder, I am writing today to ask you to cosponsor the Federal Response to Eliminate Eating Disorders Act, (the FREED Act, H.R. 1448). The FREED Act is the first comprehensive bill in the history of Congress to address eating disorders. The FREED Act 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).

Estimates suggest that more than 11 million Americans suffer from eating disorders.  I am one of them.  I am one of those girls who lost herself, and almost her life.  More than once, I ended up in the hospital from
electrolyte imbalances and blood work that told the ER doctors that my  heart shouldn’t be beating.  More than once, I prayed and hoped that my heart would, in fact, stop beating.  And without recovery, without the
extensive treatment I had, those prayers would have been answered. 

I can write to you today because of the treatment I received.  In a month and a half I will be graduating law school, because of the treatment I  received.  Everyday I enjoy friendships and gratitude, because of the
treatment I received.  I am alive today because of the treatment I received.

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, upwards of 20%. However, when a person suffering from anorexia  receives proper treatment, the death rate falls to between 2-3%.

Research demonstrates that eating disorders CAN be successfully overcome when early detection and adequate and appropriate treatment take place.  And I write to you as verification of that fact!
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 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. I ask that you sign on today as a cosponsor of the FREED Act (HR 1448), as a cosponsor of hope, as this bill has the ability to save thousands of lives.  I have vowed to never be an eating disorder death statistic: please help ensure that same  promise, for the thousands of others who are suffering!

I look forward to hearing from you soon.

Graciously yours,   Rebekkah Beth Bodoff


picture courtesy of: photobucket.com/

Mental Illnesses a "Civil Rights Issue!"

The EDC attended a luncheon at the National Press Club in Washington DC today with mental health parity champions former Congressmen Patrick Kennedy and Jim Ramstad.  Even after leaving Congress both Ramstad and Kennedy remain passionate about ensuring the implementation of a strong Final Rule for the 2008 Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act (MHPAEA) in a way that eliminates discrimination against those with mental illnesses.

EDC Policy Director & Former Congressman Jim Ramstad

The EDC was able to ask a question of the Congressmen regarding insurance tactics used to discriminate against those suffering with eating disorders. Here is a link to the video of the question and responses:
http://www.c-spanvideo.org/program/InsuranceCov
(the entire video is interesting and worth watching, but the question re: Eating Disorders is addressed beginning at: 47.58)

The two are launching Parity Field Hearings in many cities throughout the country to draw attention to the continued exclusions and inappropriate insurance denials. The EDC spoke with Kennedy directly and we will be bringing people with eating disorders who have been denied treatment to testify at these hearings.

Member Org F.E.A.S.T. on EDC National Lobby Day

Thank you to EDC Member Organziation F.E.A.S.T. for sharing about EDC National Lobby Day in your recent blog.
We are grateful to have your support that offers many voices and perspectives, of care-givers & parents especially. Please take a moment to read the F.E.A.S.T. blog: 

http://www.laurassoapbox.net/2012/03/come-to-washington-and-make-change-in.html

EDC Applauds the Creation of a Federal Bi-Partisan Caucus Addressing Eating Disorders

WASHINGTON, D.C. Feb. 28, 2012 — For Immediate Release-- The Eating Disorders Coalition (EDC) applauds Congress for establishing the National Eating Disorders Awareness Caucus. In a bipartisan effort Congresswomen Nan Hayworth (R-NY-19) and Nita Lowey (D-NY-18) are co-chairs of the Caucus.  "Their support underscores the fact that eating disorders impact Americans of all races and genders, young and old, Republicans and Democrats" said Lisa Lilenfeld Ph.D., President of the Eating Disorders Coalition.

The Eating Disorders Coalition will work with the Caucus in order to continue advancing the Federal recognition of eating disorders as a public health priority.  Jeanine Cogan Ph.D., Policy Director of the EDC said, “We are thrilled that Members of Congress expressed their interest in forming a caucus specifically to address eating disorders.  In forming the Caucus, Congress is showing their active commitment to bring attention to the devastation caused by eating disorders and come up with important policy solutions."   The caucus will help us further advance the Federal Response to Eliminate Eating Disorders Act (FREED Act), which is the first ever comprehensive bill to address eating disorders treatment, research, education and prevention. Congresswoman Lowey has been a supporter of the FREED Act and it sends an important message that Congresswoman Hayworth, the only female physician in Congress, is taking a leadership role in addressing eating disorders.

The Eating Disorders Coalition has provided a voice on Capitol Hill for the individuals who suffer, families, treatment providers, researchers and over 35 Member Organizations since 2000.  We developed relationships with Members of Congress through our bi-annual National Eating Disorders Lobby Days. The EDC worked with Members of Congress to introduce the FREED Act, which will provide access to treatment by addressing the current and disparate lack of insurance coverage most sufferers of eating disorders face.

EDC Junior Board Member Ashley Grizzard is hosting an event for the EDC in Richmond. Come out and support her and the EDC!

Mosaic will be hosting a "Community Giveback Night" Feb 29th for the Eating Disorder Coalition. It's simple---just choose to eat at Mosaic for dinner and 13% of your food's sale total will go to the EDC. Tell your friends too; there is no flyer needed just be sure to tell your waiter you are there for the EDC. You can check out their menu here:http://mosaicedibles.com/pdf/mosaic-cafe-dinner-menu.pdf

Picture just in! A living room conversation with Secretary of HHS, Kathleen Sebelius, January 2012.

EDC Policy Director Jeanine Cogan, speaks with Kathleen Sebelius about the enormous challenges people with eating disorders face in trying to access life saving care.  She let the Secretary know that things have not improved since the federal parity law passed as people with eating disorders are still regularly denied treatment and as a result some die.  Jeanine asked the Secretary if there is anything she could do to address these gaps in coverage for people suffering from eating disorders through the essential health benefits and other implementation of the Patient Protection and the Affordable Care Act.  The Secretary responded with concern and informed her that she would have her staff look into the matter. 

24 Hours to Make a Difference

Action Alert! Send your comments by midnight (EST) on January 31, 2012

The Eating Disorders Coalition for Research, Policy & Action asks you to respond to a Bulletin by Heath and Human Services (HHS) that outlined their strategy for implementing the essential health benefits (EHB) of the Patient Protection and Affordable Care Act (ACA).

The EDC was optimistic that with the passage of ACA and the inclusion of mental health as an essential health benefit, the continued and widespread insurance discrimination experienced by people with eating disorders would come to an end.

Join us in asking HHS to capitalize on this moment in history and incorporate the following 3 recommendations so that people with eating disorders will finally have access to the life saving treatment they are often denied.

Please send comments to EssentialHealthBenefits@cms.hhs.gov.

Urge the Secretary of HHS to:

1. Replace the sizeable flexibility given to the states with national uniform standards for the EHB categories.

When Congress passed the ACA and created the EHB they intended to create a uniform minimum benefit standard that would apply to all States in order to correct existing disparities. Providing national standards that include the treatment of eating disorders would guarantee uniformity across states.

Currently the options for eating disorders treatment are highly variable based on where a person lives. A state such as Rhode Island with a comprehensive state parity law requires insurance companies to provide eating disorder treatment so that individuals in that state have options for care. Contrast this with states like Wyoming and Arkansas that have no parity law and no eating disorder treatment available within the state, yet based on national prevalence data, these two states alone likely have over 75,000 individuals with eating disorders within their borders.

In the absence of a uniform standard, we believe there is a significant risk that eating disorders will continue to be inadequately covered in many States.

We urge HHS to provide concrete language defining the EHB for mental health, which requires the coverage of eating disorders.

2. Provide a federal definition of medical necessity that is broad and inclusive.

The degree to which Americans enjoy full access to covered services within the ten EHB categories will depend, to a large degree, on the medical necessity standards that plans use to determine whether a service within these categories is covered.

Few regulations address the definition of medical necessity: there is no federal definition, and only about one-third of states have any regulatory standards for medical necessity. Consequently, the definition of “medical necessity” is most commonly found in individual insurance contracts that are defined by the insurer. As a result, the standard of medical necessity is most often controlled by the insurer, not the treating professional.

This has dire consequences for people suffering from eating disorders who are continually discharged from treatment or denied treatment based on erroneous and shifting definitions of medical necessity, per insurers.

We urge HHS to offer a federal definition of medical necessity that 1) is broad enough to include all clinically necessary levels of care for eating disorders and 2) requires insurers to use well respected, clinically proven or evidence based criteria for the effective treatment of mental illness.

3. Eliminate eating disorders from exclusion lists.

Exclusion of eating disorders is all too common on the part of insurers seeking to limit interventions deemed non-essential. Despite being biologically based mental illnesses with severe physical health complications, including death, eating disorders are all too often found on lists of benefit exclusions.

We urge HHS to ensure that eating disorders treatment is no longer specifically excluded and end the discrimination against individuals with eating disorders.

Please send your comments outlining the need for these 3 recommendations and include examples from your personal and/or clinical experiences as relevant.
Send comments to EssentialHealthBenefits@cms.hhs.gov by midnight (EST) on January 31, 2012.

**Please also send your comments to: kmacdonald@eatingdisorderscoalition.org