Johanna Kandel speaks at the first Mothers and Others March on Capitol Hill on Sept. 30. Kandel is president of the board of directors for the Eating Disorder Coalition for Research, Policy and Action and the founder and CEO of The Alliance for Eating Disorders Awareness. Photo by Rachel Rifkin.
by Sara Freund
Eating disorder patients fight to survive their mental illness but, as they start to recover, can face another unexpected opponent: insurance companies.
“When coverage is being denied because a patient is medically stable is not fair and it is not promoting recovery. Treating a physical aspect is only one part of the problem,” said Claire Mysko, the programs director at the National Eating Disorders Association.
The secretive habits of people with eating disorders often makes it difficult to diagnose. Eating disorders such as anorexia, bulimia, and binge eating are complex mental illnesses. Characterized by extreme attitudes and behaviors towards weight and food,the conditions have severe mental and physical consequences. These life-threatening mental illnesses affect nearly 20 million women and 10 million men in the United States according to the National Eating Disorder Association.
Compared to other mental illnesses, eating disorders have the highest mortality rate but very few even seek treatment. Only one-third of anorectics and 6 percent of bulimics receive any treatment.
The complicated physical and mental issues associated with eating disorders require a treatment team of therapists, psychiatrists, group therapy and nutritionists. That can get expensive, especially if a patient requires residential treatment, which can cost up to $1,000 a day according to the Eating Disorder Coalition for Research, Policy and Action.
Those who do get coverage for the expensive treatment often end it before their doctors believe they are ready to leave, said Johanna Kandel. Kandel is the president of the board of directors for the Eating Disorder Coalition for Research, Policy and Action and the founder and CEO of The Alliance for Eating Disorders Awareness.
Kandel has witnessed many cases where insurance companies will call residential treatment centers days after someone is admitted asking for vitals and weight records. If their weight falls within a normal BMI range or if they appear physically stable then many times their coverage will end, said Kandel.
“It’s so hard to distinguish the physical and mental aspects of an eating disorder. You can’t deal with the mental stuff until you deal with the physical stuff. It’s such a custom form of care and insurance companies only want to treat the physical—but once your stable, that’s the first time your brain can function and you have a chance to deal with the mental issues,” said Rachel Rifkin, an advocacy intern at the Alliance for Eating Disorders Awareness and who has recovered from an eating disorder.
One reason an insurance company might deny coverage is that the patient does not meet the company’s criteria for that specific treatment, even though their doctors recommend otherwise, said Meryl Sosa, executive director of the Illinois Psychiatric Society.
A lawsuit filed in federal district court in Chicago against Health Care Service Corporation highlights some of these issues. Elizabeth Craft filed the class action lawsuit on behalf of her daughter against HCSC, the parent company of her insurance carrier, Blue Cross and Blue Shield of Illinois. Craft’s 16 year-old daughter was diagnosed with post-traumatic stress disorder, depression and anorexia. Her doctors recommended long term treatment but Blue Cross and Blue Shield of Illinois denied coverage of that care.
The lawsuit argues that the insurance company is in violation of parity law because “it covers the treatment of medical and surgical conditions in similar residential facilities.” It demands that HCSC stop excluding residential treatment for mental illness even when it is medically necessary. Blue Cross and Blue Shield of Illinois media contact Mary Ann Schultz stated that the company doesn’t comment on pending litigation.
The insurance company also doesn’t comment on general benefits for to a specific illness, Schultz added.
“There is supposed to be a level of transparency where the consumer can determine what benefits they’re being provided and what criteria insurance companies use to decide what is needed. And it’s not always easy to figure out,” Sosa said.
The Mental Health Parity Act, first passed by Congress in 1996, was supposed to help expand coverage for mental health services on a par with services for physical conditions. The act stated that mental health services had to be provided on par with benefits for physical conditions. However, insurance companies could deny coverage for certain mental health services by claiming there was no medical or surgical equivalent, said Sosa.
But the parity law only applied to insurance companies who elected to cover mental health—it did not require that insurance companies cover mental health at all. In 2008, the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act strenghened parity law. It prevented insurance companies from charging higher co-pays for mental health services or unfairly limiting the number of therapy sessions it covered. However, the final regulations did not take effect until 2013.
Even though it was approved in 2008, “I would say insurance companies are just beginning to comply with parity. It is very much on a case by case basis and parity doesn’t apply to all insurance either,” said Sosa.
Even with the changes, treatment coverage for eating disorders is still in a gray area. Parity law does not prevent insurance companies from pulling coverage for eating disorder treatment once physical stability is reached. In addition, the definition of mental health in regards to parity law can vary by state. Under Illinois law, group insurance and HMO plans must provide coverage for the treatment of “serious mental illnesses,” which include eating disorders.
A comprehensive bill introduced by U.S. Sen. Tom Harkin (D-Iowa) and later by Rep. Theodore Deutch (D-Florida) proposes ways to combat some of the issues eating disorder patients face. Their bill, the Federal Response to Eliminate Eating Disorders Act, or the FREED Act, aims to address research, treatment, education and prevention in eating disorders.
The FREED Act is unlikely to become a law because of the many requirements it calls for, but the Eating Disorder Coalition for Research Policy and Action is focusing on getting support for individual aspects of the bill’s proposals, Kandel said. Getting insurance companies to treat eating disorders beyond the physical symptoms in a comprehensive way is one issue Kandel is particularly interested in fixing.
One possible reason treatment is difficult to get covered by insurance companies is the lack of research that exists about the disease and treatment, said Kandel of the Eating Disorder Coalition that helped write the FREED Act.
One initiative of the bill is to push for more research funding from the National Institutes of Health. Despite the prevalence of eating disorders, the disease continues to receive inadequate research funding. In 2011 the NIH estimated there were nearly 3.4 million Americans with Schizophrenia and funded $276,000 in research. The NIH funded only $28,000 of research even though nearly 30 million Americans suffer from eating disorders.
“Insurance coverage is literally the biggest issue in the eating disorder community. You have a third party who knows nothing about eating disorders dictating your level of treatment or your journey of treatment which is terrible,” Kandel said.