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Alliance for Eating Disorders Awareness

August 10, 2017

Office of the Assistant Secretary for Planning and Evaluation (ASPE)
c/o Ms. Laurel Fuller
U.S. Department of Health and Human Services
200 Independence Ave SW, Room 424E
Washington, DC 20201

RE: The Alliance for Eating Disorders Awareness — Public Listening Session on Strategies for Improving Parity for Mental Health and Substance Use Disorder Coverage

Dear Ms. Townsend, Ms.Turner, Ms. Weiser, and Mr.Mayhew:

We, The Alliance for Eating Disorders Awareness, thank you for the opportunity to provide public comment on improved Federal and State coordination related to section 2726 of the Public Health Service Act (42 U.S.C. 300-gg-26), section 712 of the Employee Retirement Income Security Act of 1974 (29 U.S.C. 1185a), section 9812 of the Internal Revenue Code of 1986, and any comparable provisions of State law. As indicated by the remarks at the July 27, 2017 listening session, we are fortified by the resolve shown to enforce and improve existing mental health parity law in our nation.

The Alliance for Eating Disorders Awareness ("The Alliance") is a nonprofit organization dedicated to providing programs and activities aimed at outreach, education, and early intervention for all eating disorders. Founded in October of 2000, The Alliance has worked tirelessly to raise awareness, eliminate stigma, promote accessto careand support for those susceptible to, currently struggling with,and recovered from eating disorders. We offer educational workshops and presentations, free support groups for those struggling and their loved ones, advocacy for eating disorders and mental health legislation, a national toll­ free help line and treatment referrals to all levels of care. We have spoken to over 290,000 individuals nationwide over the last 16 years.

As confirmed by The National Institute of Mental Health, all eating disorders including anorexia nervosa, bulimia nervosa, binge-eating disorder, and their variants, create serious issues relating to eating behavior and weight regulation. Eating Disorders are associated with a very wide range of adverse psychological, physical, and social consequences.

Eating disorders are treatable medical illnesses. They often coexist with other illnesses such as depression, substance abuse, or anxiety disorders. Other symptoms can become life-threatening if a person does not receive treatment, which is reflected in the fact that anorexia nervosa has the highest mortality rate of any psychiatric disorder.

We ask you to consider the followmg circumstance. A patient is diagnosed with breast cancer and the oncologist recommends 4 weeks of radiation followed by 8 weeks of chemotherapy as the initial treatment plan. After these 12 weeks, the patient needs additional care as the cancer is still visible on the PET scan. Would that patient be denied advanced care and left to die? No, they would receive the next appropriate level of care to treat their illness. Many eating disorder patients experience just reverse of that scenario everyday.

Residential treatment facilities offer specialized and current treatment options for eating disorders. Although many patients can be successfully treated on an outpatient basis.for others, residential treatment is crucial. Unfortunately, particularly in this level of care, we often see extreme noncompliance with parity regulations. The DSM 5 clearly denotes eating disorders as a mental illness and therefore should be protected by mental health parity.

We, as an organization, along with our many partners, such as The Eating Disorders Coalition, encourage more protections and rulemaking to improve enforcement for both equal coverage of eating disorders and for life-saving intermediate care services.

We suggest that HHS amend existing regulations to include the Department of Labor, Health and Human Services, and Treasury "Treatment for Eatmg Disorders" FAQs issued on June 16, 2017 into existing MHAPEA final regulations.

We encourage HHS, DOL, and Treasury to enhance mental health parity enforcement for life-saving intermediate care for substance use disorder and eating disorders by moving the intermediate care provisions within the current fmal regulation preamble to the underlying mental health parity regulation. This action will strengthen the parity enforcement nationwide.

Repeatedly, insurance carriers are denying claims relying on mental health parity interim final rules in lieu of the final mental health parity rules. Another example includes insurance providers only writing the primary diagnosis within their systems, and excluding the secondary diagnosis. As stated earlier, co­ occurring illnesses are often seen along with eating disorders. This insurance provider practice can lead to inadequate treatment and relapse. Our last example defmes the requirement, by some carriers, for in-person pre-authorization to treatment centers. This practice is not required for medicaVsurgical care, and thus, once again, we see a violation of mental health parity.

Daily, we, at The Alliance for Eating Disorders, work with those struggling, and their families, to procure the appropriate level of care needed to save lives. In conjunction with The Eating Disorders Coalition for Research, Policy & Action, Scott J. Crow, MD, and Sonja Swanson, PhD, through their research, compiled this statistic in September 2014 - every 62 minutes at least one person dies as a direct result from an eating disorder. This should not be the reality for anyone. You have the ability to make meaningful change and create a new statistic. Recovery is possible!

We thank you for your hosting the listening session and we implore you to implement and enforce 21st Century Cures.


Johanna S. Kandel

1649 Forum Place #2
West Palm Beach, FL 33401
T: 866.662.1235 F: 561.653.0043

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Content last reviewed on October 17, 2017