Despite Uncertainty, Eating Disorder Awareness Groups Advocate for Increased Treatment Coverage

While the thought of a family vacation to Europe would please many college students, the thought of it terrified Sarah Barnitt, 22, student at the University of Michigan. Barnitt was diagnosed with anorexia nervosa in November 2015, prior to this trip. “We were eating every meal out. I was always around family, and had little access to a gym,” she says, explaining how she was unable to exercise the way she does at home. Being around family constantly made her nervous. “My mom told me that people at the hotel were staring,” she says. They could see how thin she was, just less than 100 pounds at a height of 5’6”. “It was terrifying and I had no control over anything,” she says. The following January, she began seeing a nutritionist and therapist at University Health Service for the semester, a service covered by her tuition.

Barnitt was fortunate in that she was able to find affordable treatment. According to the National Eating Disorders Association, only about a third of individuals diagnosed with anorexia nervosa receive care, partly due to the huge costs associated with treatment. Part of this is due to the huge costs associated with treatment. However, recently, legislature was passed to increase parity for mental health coverage, including eating disorders. With these laws taking effect in the near future, organizations are working to ensure their proper implementation, despite uncertainty to the future of American healthcare.

The River Centre Clinic in Sylvania, Ohio charges around $950 per day for residential services, according to David Garner, President of the clinic. In the case of eating disorders, treatment is often seen as an option to those who can afford it. “When someone needs treatment, it’s not an option. They need it,” says Kellie Carbone, a health educator who specializes in eating disorder prevention and body image at the University of Michigan. “It is frustrating to see how big of a barrier cost is, how it is seen as a luxury to recover.” In terms of insurance coverage, “eating disorders are notoriously under covered,” says Carbone.

Insurance companies think differently. “Theoretically a plan could exclude all behavior health services, but that is virtually unheard of these days,” says Jerry Johnson, Executive Medical Director at Blue Cross Blue. In the case of eating disorders, he says that companies will often cover anything that is deemed “established and medically necessary,” meaning that the services have been proven safe and effective, such as psychotherapy, medications, and hospitalization, among others.

Donohue says that a barrier to treatment is the lack of clarity as to which insurance coverage laws are written. Insurance companies are able to “interpret to their own advantage,” which may not always provide the most benefit for the affected individual. The 21st Century Cures Act aims to decrease some of these disparities.

In December 2016, Congress passed the 21st Century Cures Act. Part of this act aims to reform of mental health treatment to increase parity. “Any legislation for a more liberal definition will benefit eating disorders,” says Kenderin Sonneville, associate professor at the University of Michigan School of Public Health. Jane Banaszak-Holl, an associate professor at the University of Michigan’s Institute for Healthcare Policy and Innovation, says that this act could help individuals get treatment quicker than before. This law is slated to go into effect next year, thus efforts are picking up to ensure its proper implementation, says Kerry Donohue, Public Policy Manager at the National Eating Disorders Association.

When the Affordable Care Act was implemented in 2010, insurance companies were required to include mental illness and substance abuse services in essential benefits packages. Eating disorders are considered a mental illness based on the 2008 Mental Health Parity law, says Johnson. “If an eating disorder requires hospitalization, therapy, or drugs, it would be covered,” says Banaszak-Holl.

Despite passing the 21st Century Cures Act, questions still linger for the future of eating disorder coverage. “A lot of people are holding their breath to see what is going away under the new administration,” says Carbone.

As the uncertainty behind the future of the Affordable Care Act continues, efforts are picking up in Washington. For example, the National Eating Disorders Association is lobbying to ensure that any changes to the Affordable Care Act does not change the way the 21st Century Cures Act will be implemented.

The National Eating Disorders Association partners with the Eating Disorders Coalition to focus on federal legislative efforts concerning eating disorder treatment. On April 5th, the National Eating Disorders Association and the Eating Disorder Coalition held an advocacy day in Washington where over 100 volunteer advocates from across the country met with members of congress. The goal was twofold: first, to encourage support for mental health coverage from legislators and the second, to push for increased research funding in order to help combat eating disorders, says Donohue. There was also a virtual advocacy day, where individuals could send letters and emails to their representatives, according to Donohue. Much of the National Eating Disorders Association’s work focuses on recruiting volunteers across the country to work on legislature within their own state.

Focusing at the state level has been relatively effective. In 2015, Missouri passed a mental health parity law that includes eating disorder specific language, giving more concrete specifications as to how insurance companies must cover treatment, reducing arbitrary decisions of coverage, according to Donohue. There is hope that Missouri will act as a “model for other states”, says Donohue.

Hope is present not only in legislature, but also within individuals. Barnitt is beyond thankful for the treatment she was able to receive. “Without help,” she says,” I would have ended up in a hospital and in medical danger. I would not have been able to live on my own or get a job post grad.” Barnitt is graduating from the University of Michigan next week and is moving to Chicago to work full time as a consultant.

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