Friday, October 28, 2011

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:

Please then send an email to 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!

Tuesday, October 25, 2011

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.


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.”


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

Monday, October 24, 2011

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

Wednesday, October 19, 2011

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


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.

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:

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

To find out who your Representative is go to: and enter in your zipcode; To find out who your Senators are go to: and search for your State.

Friday, October 14, 2011

A great boost for our efforts to Hold Insurance Companies Accountable.

Dear friends,

We applaud the NY Times for its article on eating disorders and residential treatment that appeared on the front page today. The EDC is thrilled that we succeeded, along with others, in urging the NY Times to address the growing challenge people with eating disorders face in accessing residential care. The EDC is actively working to change the current trend of insurance companies to refuse coverage for eating disorders treatment through the FREED Act, which would REQUIRE insurance companies to cover treatment for eating disorders according to the APA Guidelines.

The EDC applauds Lisa Kantor, Bruce Nagel, Elizabeth Wrobel and other attorneys who are suing insurance companies that violate state and federal laws by refusing to cover medically necessary eating disorders treatment. If you have been denied coverage for eating disorders treatment we want to hear from you. Email us at

To read the article go to It is on the front page!

Jeanine Cogan, Ph.D.
Policy Director
Eating Disorders Coalition

Tuesday, October 11, 2011

EDC Advocate shares her experience with lobby day last week. Thank you Taylor Meneley for your beautiful poem!

Past and Present

We were in the 8th grade.
We were 13 years old.
We were best friends.
We would hang out with the guys.
We were the normal teenage girls.
We would stand in front of the mirror together.
We would do our hair in a different way and try new makeup.
We stood there together trashing our bodies.
We began to struggle; together, each in our own way.
We struggled together in a silent understanding.
We listened to media and our peers.
We saw imperfection.
We had no allies to tell us differently.
We turned 14.
We graduated from 8th grade.
We went to Washington DC together on our 8th grade trip.
We laughed.
We cried.
We talked.
We heard the pain each of us felt.
We heard how those struggles had led us into a darkness with no visible light.
We didn’t know how deep into the darkness we would actually go.
We stopped struggling together in a silent understanding.
We began to struggle alone.
We lost each other.
We started high school.
We missed the fun.
We saw no meaning to life.
We lost our way.
Now, we are seniors.
Now, we are 18.
Now is present day.
We are back together.
We are best friends.
We return to Washington DC.
We see more light than darkness.
We no longer struggle in silence.
We found our voice.
We no longer say hateful things about ourselves.
We speak out against Eating Disorders.
We no longer let them define our lives.
We enjoy life.
We are found.
We can be FREED.

If you want to share your experience too we'd love to hear from you.  Please email us at