Anorexia: Families Fight for Insurance Coverage

Marisa Meiskin had been to specialists and therapists—even spent a month in a New Jersey treatment facility. She'd lost friends over her obsession with her weight, and quit school activities. Finally, her pulse got so low that her doctors feared the 16-year-old's heart might stop. "The illness got to be bigger than her. It was her life and it controlled her," says her father, Jeff.

That's when Jeff and his wife, Cindy, of Robbinsville, N.J., knew they had to do something drastic—whatever the cost. They checked their anorexic daughter into a private treatment facility some 2,500 miles away from home in Petersboro, Utah, for an intensive five-step program against a backdrop of picturesque rolling hills and complete with an equestrian program, yoga and music therapy. They liked the atmosphere, and hoped for the best.

Marisa spent the next four months there recovering, at nearly $30,000 a month. She graduated from the program last July. Today, say her parents, she's a happy, healthy teenager with a summer job. But she got that way with little help from her insurance company, Aetna. And her treatment sent the Meiskins digging deep into their pockets to cover the approximately $120,000 cost (including travel), of which Aetna covered about a quarter. "If she were there longer, who knows, we might have had to sell the house," says Jeff Meiskin. "But if it meant we got back our daughter, we'd do it."

Like most states, New Jersey law doesn't require insurers like Aetna to cover the cost of eating disorder treatment, despite the fact that some 11 million people are afflicted by eating problems, ranging from anorexia and bulimia to binge eating, according to the National Eating Disorders Association, a Seattle nonprofit. Rather, the law mandates coverage of mental illnesses considered to be "biologically based," a list that includes disorders such as schizophrenia and obsessive-compulsive disorder, well known to be products of genes, not just social or environmental forces like peers or parenting.

Anorexia, too, is biological, say many experts and some clinical studies. Thomas Insel, the director of the National Institute of Mental Health, has called it a "brain disease." But that's not the case when it comes to New Jersey law, which is worded in a way that excludes eating disorders from the list of biological mental illnesses that require coverage—leaving many patients out in the cold. "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, the CEO of the National Eating Disorders Association. "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."

To get out of that financial morass, the Meiskins sued Aetna, and found nearly 100 other families willing to sign on to their claim. Now the Hartford, Conn.-based insurance company is willing to settle the case, paying the families $250,000 (to be split among them) for claims dating back to 2001 and covering future eating-disorder claims for people enrolled in fully insured plans by the beginning of September. "This is a landmark settlement we hope will change the way insurance carriers view eatings disorders," says the group's lawyer, Bruce Nagel. "It's the first time in the country an insurer has agreed to pay past denied claims."

The settlement, which was agreed upon by both parties but still needs court approval to proceed, may be a breakthrough for advocates of eating disorders. But some critics contend it's still unlikely to change the financial bottom line. With out-of-pocket costs for inpatient care averaging $25,000 a month (and average stays at three to four months), according to Grefe of NEDA, the $2,500 each family will get in the settlement won't even begin to cover what some have paid out of pocket already. Aetna does treat eating disorders to some extent: 30 days of inpatient care and 20 days outpatient is a common coverage plan; the company also has a pilot program that pairs families with nurses to coordinate aftercare. But it's those limits that often cut treatment short. And though the company will put eating disorders on par with other biological illnesses for the moment (thus bypassing those limits), they don't plan on implementing that policy on a permanent basis. "We have covered and continue to cover treatment for eating disorders," says Aetna spokeswoman Cynthia Michener. "But under the [state] statute, for people not included with the [class action settlement], we're still going to comply with the law."

For the moment, the fight for insurance coverage is as strong as ever. There's another class action suit in New Jersey, against Horizon Blue Cross Blue Shield, and the lawyer in that case, Eric Katz, has filed a court objection to the Aetna settlement, arguing that its limited terms undermine his case for full and unlimited parity. (He points out that only 100 people will receive coverage for past claims under the Aetna settlement; statistics, he says, show that more than 25,000 were denied coverage over the past seven years.) "On its face, [this settlement] looks like it provides some kind of relief," says Katz, who is still signing on new members for his case against Horizon. "But in reality, it gives up the rights of everybody."

Last week, the House and Senate came up with a compromise mental health parity bill that reconciles the two versions each had approved. If passed, the new law would prohibit discrimination between mental and physical illnesses by insurance companies. But the bill doesn't list eating disorders explicitly, leaving many families to sift through state laws and endless insurance rules to determine what's covered, and for how long.

Most states do have their own parity laws, but only about a dozen specifically include eating disorders as part of that parity, according to a 2007 report from the National Women's Law Center. New Jersey, meanwhile, is one of seven states with limited parity, meaning its laws contain exemptions for illnesses that are not considered "biological." New Jersey lists illnesses such as schizophrenia, obsessive-compulsive disorder, psychosis, major depression "and others" under that definition, but not eating disorders explicitly. And whether or not anorexia and bulimia are indeed one of those "others," it's easy for companies to argue otherwise. Horizon, which typically covers 30 days of inpatient care and 60 days of outpatient, defends its policy. Says company spokesman Thomas Rubino, "The argument that anorexia is biologically based is contrary to its medical classification and New Jersey law."

That's a line Dawn Beye, the leader in the suit against Horizon, knows all too well. Three weeks into her daughter's treatment for anorexia, which doctors say can take months, Horizon stopped paying. Her daughter came home and hit rock bottom. Ultimately, she checked into a private facility, and Dawn and her husband took out home-equity loans, tapped every savings account, and even depleted their childrens' college funds to pay for it. "We told [our daughter], '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," says Beye.

To date, the Beyes' 18-year-old has spent 13 months in inpatient treatment, putting the special education teacher and her now ex-husband more than $250,000 in debt. And that length of stay is far from uncommon. Many anorexics enter treatment 30, even 40 pounds underweight, and it's impossible to safely gain more than two pounds a week, say experts. That means four months minimum—if things go smoothly.

For many anorexics, solving those problems at home would simply be impossible, no matter how supportive the parents. If treatment is to be effective, patients need constant support and multidisciplinary care, from physicians and social workers to dieticians and occupational therapists, say advocates for those with eating disorders. "You simply cannot get this type of integrated team work on an outpatient basis," says Cynthia Bulik, a clinical psychologist and the director of the disordered eating program at the University of North Carolina at Chapel Hill. "Given the number of deaths—and the number of lawsuits—it's hard to comprehend how these patients can get pushed to the bottom of the list."

If a patient does fall through the cracks or is discharged too early, relapse isn't the only fear. Ten percent of the nation's 8 million anorexics will die from their disease, according to NEDA. Federal parity law may not overhaul things, but Bulik is hopeful that other efforts might. The Eating Disorders Coalition, a nonprofit advocacy group, is drafting language for an eating disorder bill called the FREED Act, which would implement research and education initiatives, as well as require employers and insurers to cover eating disorder treatment the same way they cover physical disorders. In New Jersey, state Sen. Joseph Vitale has introduced two bills, one that would add eating disorders to New Jersey's list of covered mental illnesses, and another that would explicitly define them as biological.

For the moment, patients' best bet may be getting insurance companies or employers to realize that parity doesn't cost as much as they think. In a Congressional Budget Office report on an earlier version of the House bill (which aimed to include coverage for every illness listed in the Diagnostic Statistical Manual of the American Psychological Association), it was estimated that premiums for group health insurance would increase by an average of just four-tenths of a percent, and some of the cost could be passed on to workers.

Meanwhile, as Bulik points out, treating anorexia early is the best way to prevent future health ailments. The lasting effects of anorexia range from osteoporosis to severe gastrointestinal problems. "If insurance companies would help families when their children are beginning to show signs of disordered eating," they could save money and perhaps even prevent a full-blown eating disorder, says Grefe of the NEDA. Not to mention a whole lot of anguish.