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

Action Alert -Petition to End Discrimination

The EDC supports the efforts of this petition and encourages you to sign your name today. Then spread the word!

http://www.change.org/petitions/childrens-healthcare-of-atlanta-end-the-stop-sugarcoating-obesity-campaign

Together we can stop the dangerous trend of shaming people because of their weight, shape, size.

~yours from the Hill, the EDC

from BEDA --

Why This Is Important

The "Stop Sugarcoating" campaign developed to address childhood obesity sends several dangerous messages to both children and adults. It shames children who are larger, reinforces social prejudices around size by encouraging weight stigma, and rather than focusing on healthy behaviors it uses bullying style advertising to encourage kids to diet and exercise. In short, the campaign traumatizes children struggling with their own feelings about size and may even reinforce their use of food as a coping mechanism. See the campaign here: http://strong4life.com/#

Public bullying of kids and adults because of size is not acceptable. The campaign does not consider that kids of all sizes are susceptible to eating disorders, which have the highest rates of mortality with regard to mental health illnesses. Public shaming is archaeic, dangerous, and inexcusable. Weight stigma is extremely damaging and studies show it actually lends to increased weight. The public health officials who designed this campaign should be embarrassed and do everything they can to stop this campaign. They also owe an apology to the citizens of Georgia and the entire country. The Binge Eating Disorder Association (BEDA) sponsors the National Weight Stigma Awareness Week yearly during the last week of September. We encourage public officials and others to read the information provided about weight stigma on our website at http://www.bedaonline.com/2011WSAW/index.html. We also encourage them to consider the risk/benefits of the campaign they have designed. We ask you, CHOA, to stop sugarcoating your weight stigma, call a spade a spade, and do the right thing.

photo credit: http://barbaracolebythesea.com/wp-content/uploads/2010/10/discrimination.jpg

EDC Addresses All Treatment Denials

EDC Update: The Eating Disorders Coalition expands HICA Campaign to include all denials of eating disorder treatment.

In early 2011 the EDC initiated the Hold Insurance Companies Accountable Campaign (HICA Campaign) as a response to a number of insurance companies that are categorically denying residential treatment for eating disorders.

We are now expanding the HICA Campaign to include all denials of eating disorder treatment.

Mental Health Parity 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. According to the nationally recognized law firm of Patton Boggs, the 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. The EDC argues that treatment should be determined by severity and type of illness, rather than what is arbitrarily allowed by an individual's insurance company.

Through legal and political advocacy, the EDC's Hold Insurance Companies Accountable Campaign is working with specialized attorneys and experts in the field to put an end to such discriminatory and deadly practices.

IN ORDER TO HELP YOU, WE NEED TO HEAR ABOUT YOUR EXPERIENCE:

If you or a loved one has been denied insurance coverage for eating disorder treatment, please email us at: EDCHoldsInsuranceAccountable@yahoo.com

We will send you a short form to fill out and then work with you to alert Members of Congress and other people who could help address your situation (such as pro-bono attorneys if appropriate).

You deserve access to care and we look forward to helping you gain justice in that regard.

use your voice -Action Alert

EDC asks you to use your voice to make sure eating disorders get included in insurance coverage

If you haven't already: Please submit your comments today!

Deadline has been extended to November 30th

_______________________________________________

A key component of the Affordable Care Act (ACA) is the requirement that all insurance plans offered through the exchanges must cover, at a minimum, a number of Essential Health Benefits. Mental health is one of these Essential Health Benefits (EHB) that must be included.

The Department of Health and Human Services (HHS) is tasked with promulgating regulations for how the EHB will be designed and implemented. The EDC is asking HHS to incorporate three recommendations into the EHB: 1) eating disorders should be specifically listed in the EHB, 2) all levels of treatment including residential treatment, as recommended by the APA Guidelines, should be part of the EHB, and 3) the definition of medical necessity should be broad and inclusive so that insurers cannot assign medical necessity at random.

Please add your voice by sending comments to HHS ) you urge them to support these above 3 recommendations and 2) some of your personal experience that underscores why these recommendations are important. For example: maybe you personally benefited from successful residential and/or other treatment ---include that in your comments. If you were denied residential and/or other treatment ---include that, and the consequences of being denied, in your comments. And include anything else about your experience or expertise that underscores the need for these 3 recommendations. We know that personal stories matter to HHS.

TO SUBMIT A COMMENT, send your email to: externalaffairs@hhs.gov

Please then send an email to kmacdonald@eatingdisorderscoalition.org to inform us that you sent your comments.Thanks so much for taking a few minutes out of your day to make an important difference. Together we will improve the lives of those suffering from eating disorders!

Here are some additional talking points the EDC has made:

In response to the Department’s stated questions:

In terms of how to best balance comprehensiveness of included in essential health benefits and affordability; we believe that:

o Ensuring access to comprehensive specialized eating disorder care, across all levels of care including outpatient, intensive outpatient, partial hospitalization, residential, and inpatient, will allow individuals to access adequate, effective, evidence-based care in specialized settings, and decrease their need to access less specialized, less effective, more emergent medical and psychiatric care. Decreasing use of high-cost emergent and/or on-going use of inadequate care will balance comprehensiveness and affordability. Eating disorders have the highest mortality rate of all psychiatric illness. Including comprehensive eating disorders treatment in EHB will safe lives.

In terms of how the Department might ensure that essential health benefits reflect an appropriate balance among categories; it is important for the Department to know that:

· Eating disorders affect up to 25 million Americans, across all age, gender, SES, and ethnicity groups. Ensuring access to treatment will have an appropriate balance across the population of sufferers, many who, without adequate access to specialty care would unduly access inappropriate, inadequate, but costly, care.

In terms of what should be taken into account to prevent discrimination against individuals because of their age, disability status, or expected length of life; it is important to remember that:

o Eating disorders do not discriminate. Eating disorders affect up to 25 million Americans, from as young as age 8 through the lifespan. Without adequate access to effective, specialized care, many end up seeking disability coverage due to their illness.

In terms of what models HHS should consider in developing essential health benefits; there are some good model policies in effect currently:

o Insurance policies that include adequate and comprehensive access to specialized and comprehensive eating disorder care at all levels of treatment offer their members the opportunity for full recovery. Many insurers currently offer this type of coverage to their members. This type of treatment access is effective in successful treatment and resolution of the eating disorder. A fully recovered individual contributes to the workforce, is a productive and successful member of society.

In terms of what criteria should be used to update essential health benefits over time; we believe that the combination of research and clinical practice expertise yield the most comprehensive road-map for determining updates :

o As advances in eating disorders treatment are made, updates to essential health benefits should be related to clinical utility and integration of research findings.

Jeanine Cogan, Ph.D.

Policy Director

Eating Disorders Coalition

www.eatingdisorderscoalition.org

202-352-3208