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