Eating Disorders: The Insurance Fight

Dawn and Bart Beye did everything by the book. When their teenage daughter began showing signs of a serious eating disorder, they caught on fast—confronting the illness in its early stages. When their child got progressively worse, they enrolled her in a full-time treatment program they thought was covered by insurance. But three weeks into their daughter's treatment for anorexia—which experts say can take months—the Wayne, N.J., couple was told their insurance provider, Horizon Blue Cross Blue Shield of New Jersey, would no longer pay for treatment.

More than six months later, as their 16-year-old (whose name is not being identified at the family's request) remains in a private recovery facility, the Beyes have spent tens of thousands for her treatment out-of-pocket. They've taken out home-equity loans, tapped every savings account—even depleted their childrens' college funds. And on top of it all, Dawn, a special-education teacher, is out of work due to her own health: she found out in September that she had a benign brain tumor that had to be removed. "Here I am, left with close to $200,000 in medical bills, my daughter still needing treatment, every asset we have at risk, and the stress and emotions are off the chart," she says. "Now my daughter, who wants to get better, wants to know if we can keep her [in treatment]. We told her, 'We may not have the same house when you come home—but it's only a home.' The most important thing is that she gets the treatment she needs."

Fighting Back: Beye is suing her insurance company for not fully covering her daughter's eating disorder

Though eating disorders affect some 11 million people in the United States, according to the National Eating Disorders Association, only 11 states have laws explicitly mandating that insurers cover their treatment. Thirty-four states require general mental health coverage, though insurance companies have a lot of leeway in how they define "mental disorders" and some may not cover anorexia or bulimia. The result is many families sinking into medical debt. "Wherever I go, I hear the same stories—families depleting their retirement accounts, going through life savings, taking second mortgages on their homes because insurance companies won't pay for their child's coverage," says Lynn Grefe, head of the National Eating Disorders Association, a Seattle-based advocacy group. "I don't think I can think of a state where I don't hear these stories, and families just don't know how to get out of this hole."

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That denial of coverage is why Dawn Beye, with the help of a vast team of medical and legal experts, filed a class-action lawsuit Nov. 8 against Horizon Blue Cross on behalf of the residents of New Jersey, New York and Pennsylvania—maintaining that her daughter's and other similarly situated patients' illnesses are "biologically based" and should be covered under the laws of all three states. The company disagrees, saying anorexia is a product of one's environment rather than genes—and therefore not covered by the state laws. At stake, says Beye, are lives—as more than 10 percent of the nation's 8 million anorexics will die from their disease, according to the National Eating Disorder Association.

With out-of-pocket costs for inpatient medical care ranging anywhere from $15,000 to upward of $30,000 a month (Beye says her daughter's program costs them $1,500 a day), it's not surprising her battle is not the first to be brought to court, and will likely not be the last. The most notable case was in 2001, when Blue Cross and Blue Shield of Minnesota agreed to pay $8.2 million to the state and expand its coverage of eating disorders to settle a suit involving treatment denied to a 21-year-old anorexic woman who committed suicide. Beye's lawyers hope her case will set a similar precedent.

Blue Cross of New Jersey, meanwhile, contends that while the state's mental-health law requires insurers to cover mental illnesses the same way it covers medical illnesses, it does not specifically list eating disorders under this category. What it does list are schizophrenia, obsessive-compulsive disorder, psychosis, major depression "and others." Because of that distinction, Blue Cross limits its coverage to 30 days of inpatient and 60 days of outpatient care, noting in a statement that the company's decision in the Beye case was reviewed and upheld by an independent commission and that "any argument that anorexia is a biologically-based mental illness is contrary to its historic medical classification and New Jersey law." Beyond the interpretation of the law, Blue Cross spokesman Thomas Rubino says that while there have been "a number of studies over the years that point to environmental and other factors [as causes of anorexia], there are no studies that have conclusively proven that [anorexia nervosa] is a biologically-based mental illness."

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Leading experts in the field—and even the federal government—however, clearly counter that claim. In a letter to the National Eating Disorders Association last month, Thomas Insel, the director of the National Institute of Mental Health, states that "anorexia nervosa is a brain disease" and while its "symptoms are behavioral" the illness "has a biological core." The NIMH Web site also lists numerous studies that attest to that statement. "Anorexia has the highest death rate of any mental illness, and for companies to hide behind what's an interpretation of New Jersey's law is very self-serving," says New Jersey state Sen. Joseph Vitale, chairman of the state Senate's health committee and author of a bill to mandate coverage of eating disorders.

Dr. Cynthia Bulik, a lead eating-disorder researcher who has used twin studies to look at genetic contributions to anorexia, says that though environmental factors do indeed play a roll in the manifestation of anorexia and bulimia, the biological contributions are clear. A clinical psychologist and director of the eating-disorders program at the University of North Carolina, she says that eating disorders are being held to a different standard of proof than other complex mental illnesses for which insurers will "happily pay." Bulik says, "We would like to see them hold schizophrenia, asthma, bipolar disorder, autism, etc., to the same standard. All of the research in these areas point definitely to biological causes, but [as in the case of anorexia, they] show that environment can trigger the disorders."

Bulik adds that insurance companies may not be thinking in the long term as they determine coverage plans for eating-disorder patients, as the lasting effects of anorexia range from osteoporosis to severe gastrointestinal problems. In addition, women who are taken out of treatment early have a much higher rate of reoccurrence. "If insurance companies would help families when their children are beginning to show signs of disordered eating before it becomes a full-blown eating disorder," they would save money and the anguish and frustration faced by families, says Grefe of the National Eating Disorders Association. "If they could get interventions early, they may not even need inpatient treatment."

While the Beyes wait for the outcome of their suit (which could be several years), Dawn says her daughter is coming along well, though it's not an easy battle. "It's a real roller coaster of emotions," says Dawn. "And to have to fight with our insurance [company] at this time for something that we are covered for and entitled to is just so inappropriate. Somewhere along the way, it has to be illegal."