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

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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

Over 200 Respond to HHS Action Alert! Thank You for Your Help

Dear EDC Advocates,

Before I began serving as the EDC's Policy Assistant I was an EDC Advocate who came to EDC National Lobby Days and participated in Action Alerts.

When I first became an EDC Advocate back in 2002, I admit, I did not firmly believe that my voice could make that much of a difference. I mean, every day I listened to NPR and watched CSPAN and heard endless stories of gridlock and spending cuts plaguing our Federal Government, so in the scheme of things I didn't think that one Kathleen MacDonald could make an impact. Today, I know better. I know that my voice matters. And I want you to know that your voice matters.

Last week the EDC invited you to raise your voice in a time-sensitive and highly important Action Alert. Over 200 of you wrote in to HHS, sharing your voice, your stories, your research, your knowledge, your loved one's memories and your specific requests regarding eating disorders and the soon to be determined Essential Health Benefits. You made an impact and you spoke for the countless millions who suffer, for the countless millions who try to access treatment only to be denied by their insurance company, for the countless whose lives have been cut far too short by these insidious diseases, and for future generations who can be prevented from suffering the most deadly of all mental illnesses.

On a personal note - with each one of your emails to HHS you increased the flame of hope within me. You increased my hope that together we will change the way those affected by eating disorders are treated --including families, sufferers, researchers, and clinicians.

Thank you for each of your comments to HHS and for your continued advocacy. We look forward to continuing our other advocacy efforts with you as we work to ensure that eating disorders research, treatment and education and prevention are adequately and duly addressed, and that people suffering from eating disorders receive the treatment, services and compassion they deserve.

Yours from the Hill, Kathleen



Photo courtesy PDPhoto.org

Important Action Alert!

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

Please submit your comments today!

Deadline for this is Monday at 5 pm EST.

_______________________________________________

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 (---aka: HHS is RIGHT NOW deciding what these "Essential Health Benefits" will 'look like' in the lives of you, me, in each of us)

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 as instructed below and tell them 1) 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!

The Eating Disorders Coalition Speaks Out

The EDC urged HHS to include eating disorders, and all levels of appropriate treatment, as part of the Essential Health Benefits under the Affordable Care Act.

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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 (EHB). Mental health is one of these Essential Health Benefits 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. HHS is grappling with a number of questions such as how they can best meet the dual goals of balancing the comprehensiveness of coverage included in EHB with affordability. Additionally HHS wants to determine what policy principles and criteria should be taken into account to prevent (as is required by the Affordable Care Act) discrimination against individuals because of their age, disability status, or expected length of life. In order to answer these and other pertinent questions pertaining to the EHB, HHS is asking to hear from providers, advocates and consumers and have organized a number of “listening sessions”.

The EDC attended one of those listening sessions on Thursday, October 20th and addressed a number of recommendations. Three recommendations we included were 1) eating disorders should be specifically listed in the EHB 2) all levels of treatment, as recommended by the APA Guidelines, should be part of the EHB. 3) the definition of medical necessity should be broad and a standard so that insurers cannot assign medical necessity at random.

Kathleen MacDonald, EDC Policy Assistant, started her testimony by sharing the devastating and moving true stories of Leslie George and Anna Westin who died more than a decade ago because they did not receive the life saving treatment they needed. She then fast-forwarded to Reanna’s story, a young woman from Nevada who died in late 2010, waiting for access to treatment. Reanna’s mother had taken a new job as a truck driver to have better insurance since their previous insurance would not authorize treatment. There was a 90-day waiting period for the new insurance to kick in. Reanna died shortly before the 90 days were up. Kathleen pointed out that ignorance and stigma surrounding these diseases and those who suffer from them, has not subsided in the 10 plus years since Anna and Leslie died, nor since the Mental Health Parity and Addiction Equity Act passed in 2008.

Kathleen delivered her verbal testimony with such heart and effectiveness that she received a personal email from one of the HHS Directors afterwards, thanking her for her words and how powerful they were. Part of the email read: “I have copied my HHS colleagues on this note to let you know that we discussed afterwards how moving your testimony was and we all want to thank you for sharing your experiences with us.”

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A few excerpts from Kathleen’s comments:

“Eating disorders need not continue to be the number one killer of all psychiatric illnesses and the number one killer of young women ages 15-24 who suffer anorexia.”

"if eating disorders are not specifically detailed out in a benefits package, they are often excluded, despite ‘mental health parity’. In fact, in January 2011, Federal BCBS, which insures over 8.3 million people, discontinued coverage of residential treatment for eating disorders. In fact, a treatment center in VA where many Federal employees needing treatment were when BCBS pulled the plug, shut down earlier this year."

"it is for those reasons and so many more that it is not only imperative that HHS consider including eating disorders but also that they spell out that insurers must follow the APA guidelines for the treatment of eating disorders, and that as those guidelines are updated, so should the EHB be updated"

"I also echo many of my colleagues who have said that the Essential Health Benefits package must include a broader definition of medical necessity that insurers must abide by. Why? Here is just one example why: to be considered anorexic (which most sufferers are not --most are EDNOS), you must weigh 85% of your Ideal Body Weight. This past summer an insurer in North Carolina decided to discharge a patient when she reached a painful 65% of her Ideal Body Weight (because that was their ‘new’ definition of “medical necessity”). This is just one of the many reasons why medical necessity needs a more broad and standard definition".

Jeanine Cogan, Ph.D., Policy Director

Eating Disorders Coalition

www.eatingdisorderscoalition.org

EDC response to NYTimes article

The EDC responds to the NY Times article, "Eating Disorders a New Frontier Front in Insurance Fight". We wrote the following letter to the editor that was not published. The letter is so short in order to meet their length requirement of 150 words only.

To the NY Times:

Thank you for addressing the discrimination those suffering from eating disorders face when accessing insurance coverage for residential treatment. Unfortunately Ira Burnim of the Bazelon Center is quoted as an expert after he specifically stated he "was not familiar with eating disorders". If he is not familiar with eating disorders, his perspective is irrelevant and misleads the reader. According to the American Psychiatric Association Guidelines for the Treatment of Eating Disorders, residential care is a critical stage in a continuum of comprehensive and effective treatment. Residential treatment is often effective when the appropriate amount of treatment is provided, as demonstrated again in a 2011 outcome study (62% of patients with bulimia at a 4 year follow-up showed good outcomes). Clinicians are often prevented from treating patients appropriately because insurers prematurely discharge patients. This is why we need to pass the Federal Response to Eliminate Eating Disorders Act, which requires reimbursement for appropriate treatment.

Lisa Rachelle Lilenfeld, Ph.D.

President, Eating Disorders Coalition

3 Ways To Help Move The FREED Act Forward

It has been a couple weeks now since EDC advocates descended on the Hill for EDC National Lobby Day to share their stories with Members of Congress and staff about why we need the FREED Act. Since then we hope you've continued to be inspired by your advocacy efforts --they made an impact.
The forward momentum we began generating on EDC National Lobby Day needs to continue if we want to see the FREED Act passed. Here are three effective and important ways you can help continue moving the FREED Act forward:

One --participate in our Letter-Writing Campaign (details below)

Two --ask at least 10 of your family and friends to participate in this Letter Writing Campaign. We have had Members of Congress sign onto the FREED Act after receiving just one letter from a constituent.

Three --Tweet and "share" on FB about the FREED Act and this blog. So many, including providers and sufferers and parents and caregivers, do not yet know about the FREED Act. We need to work together to get the word out about FREED. Imagine if every constituent who has been affected by an eating disorder participated in our Letter Writing campaign? Members of Congress would then clearly see that Eating Disorders are serious, there is hope, and they CAN make a difference by seeing that the FREED Act gets signed into law as soon as possible.

Let's continue our momentum, using the power of our collective voices to: Stand up, Believe, Make a Difference! ~ With sincere thanks to each of you for all the time and energy you dedicate to helping pass FREED. yours from the Hill, Kathleen

LETTER WRITING CAMPAIGN DETAILS:

How? Call your Member of Congress' office in DC and ask to speak to the person who handles eating disorders or related issues. Normally you will be asked to leave a message for that person (oftentimes that person is referred to as the "Health LA"). When you leave your message, state that you are a constituent and that you would like to talk with them about eating disorders and the FREED Act. Leave your name and number (speak slowly and clearly), and ask for a return call, or an email. <--Oftentimes the staff member will state their email address within their voicemail recording so be ready to take down their email address and then in your message, let them know you will follow-up with an email. If you do end up emailing the staffer, please see the Sample Letter on the EDC Facebook page and/or website for ideas of how to draft your message.http://www.eatingdisorderscoalition.org/letter-writing-campaign.htm

Keep your email message to what would be a one-page letter. When you tailor the sample letter to be personal, you are welcome to include something about the recent NYTimes article, such as, "A couple of weeks ago individuals who have been personally impacted by eating disorders were on the Hill sharing their stories and requested that your boss sign on as a cosponsor of the Federal Response to Eliminate Eating Disorders (FREED) Act, H.R. 1448/S 481. I wanted to bring your attention to an article that was on the front page of the New York Times on October 14, 2011 regarding the serious issues individuals with eating disorders are facing with getting insurance coverage. This story further reinforces the importance of ensuring that insurance companies provide coverage for eating disorders, an issue that the FREED Act would address. The New York Times front page story:http://www.nytimes.com/2011/10/14/business/ruling-offers-hope-to-eating-disorder-sufferers.html?_r=1

On your emails to staff, please cc: kmacdonald@eatingdisorderscoalition.org so that we can help you follow-up.

To find out who your Representative is go to: http://www.house.gov/ and enter in your zipcode; To find out who your Senators are go to: www.senate.gov and search for your State.