02/02/2007 03:33 pm ET | Updated Nov 17, 2011

Weighing the Models of Eating Disorders

Two big stories about eating disorders are currently making headlines, but this is not altogether good news for those who suffer from anorexia and bulimia. The first story spotlights the fashion industry's role in promoting eating disorders. The second focuses on families who have begun to sue insurers for denying essential medical and psychiatric treatment for these disorders. Unfortunately, the way the two stories have been reported makes them seem at cross purposes.

The news that runway models are starving to death has dominated the tabloids since last August, when Uruguayan - and underweight -- mannequin Luisel Ramos suffered a fatal heart attack during a fashion show. In November, Brazilian supermodel Ana Carolina Reston died of an infection caused by anorexia. She was 5'8" and weighed just 88 pounds.

The fashion establishment of Madrid responded by requiring models in Spanish fashion shows to have a minimum Body Mass Index (the standard measure of body fat based on height and weight) of 18. Under the new guidelines, a model Reston's height would have had to weigh at least 119 pounds to work the catwalks during Madrid's Fashion Week. Milan's fashion industry then raised the minimum BMI for models in Italy to 18.5, and Versace, Prada, Missoni, and other leading designers vowed to showcase clothes for larger sizes. This mandate for "a healthy, sunny, generous, Mediterranean" look was intended not only to protect the health of the models, but also to set a healthier example for the millions of women and girls who follow fashion's lead.

So when the Council of Fashion Designers of America refused to adopt a minimum BMI for models working next week's New York Fashion shows, the media played the decision as perverse and mystifying. Instead of requiring healthier models, a panel led by Diane von Furstenberg merely encouraged designers to use older models, offer more nutritious catering at shows, and schedule fittings during the day so models could get more sleep! Eric van Furth, MD, FAED, president of the international Academy for Eating Disorders, told the New York Times, "The way they are presenting their guidelines really shows they are not acknowledging the seriousness of the problem of eating disorders at all."

In a sense, however, the American designers have articulated the problem more accurately than their European counterparts. "Eating disorders," the CFDA panel wrote, "are emotional disorders that have psychological, behavioral, social and physical manifestations, of which body weight is only one." Paradoxically, while the American designers seem to be using this observation to justify inaction, their statement could end up better serving the interests of anorexic and bulimic patients than do those European mandates. That's because it refutes the notion that changing the images in Vogue and Bazaar would solve the problem of eating disorders. This notion is one of the core myths behind the insurance industry's refusal to adequately cover treatment.

Even though the risk of death is three times greater in anorexia nervosa than in depression, schizophrenia, or alcoholism, insurers maintain that eating disorders have no biological basis - and therefore require no more than a month or two of inpatient hospital care per year. The truth is that severely ill anorexic and bulimic patients frequently need treatment for three to six months or more. Crucially, they need treatment after bringing their weight up, or they will likely relapse. This is true whether or not they have ever seen a fashion magazine.

To bridge the gap between their insurance and their daughter Amberly's recovery, Dawn and Bart Beye expect to go $100,000 into debt. Sixteen-year-old Amberly spent 23 days in a Philadelphia treatment center for anorexia in 2006 before her insurance had run out. Within days of her discharge her weight was dropping again, her heart rate fell to 40 beats per minute (60 to 100 is normal), and her hands and feet turned blue. Horizon Blue Cross Blue Shield of New Jersey, Amberly's insurer, would cover just seven more days. Tom Rubino, a spokesman for Horizon, told the Newark Star Ledger, "There is no conclusive evidence that anorexia is a biologically based mental disorder, and that is what our decision is based on."

The Beyes paid out of pocket to send their daughter to an out-of-state treatment center. Then they filed a class action suit against Horizon. Other parents have since joined, including Aetna in the suit.

Science is on the Beyes' side. I discovered this while surveying the last thirty years of eating disorders research for a book about recovery. Contrary to the prevailing assumptions when I was struggling with anorexia nervosa in the 1970s, researchers now have proven that anorexia and bulimia, like autism, schizophrenia, and bipolar disorder, have a strong genetic component. Numerous twin studies have shown that DNA accounts for as much as 84 percent of the risk for eating disorders. According to van Furth, these illnesses are "caused by a neurobiological disorder of the brain; that significantly impairs cognitive function, judgment, and emotional stability; and limits the life activities of the person with the illness."

This neurobiological basis, however, feeds on cultural and social influences - including underweight fashion models. Cynthia Bulik, PhD, FAED, who directs the University of North Carolina Eating Disorders program, is one of several clinicians actively championing the Beyes' cause. In a letter to the State of New Jersey she explained, "In much the same way that a traumatic event can trigger an underlying predisposition to major depression, environmental factors such as a radical caloric restriction diet can trigger a genetic predisposition to anorexia nervosa."

In other words, the causes of eating disorders are both biological and cultural. But this point rarely makes its way into media reports about anorexic fashionistas or wasted girls being fed through the nose in hospitals. Instead, reporters tend to simplify and sensationalize what is, in fact, an extremely complex problem. Models and their admirers are assumed to become anorexic because of the fashion industry, not because their anorexia attracts them to the same standards the industry flaunts. And instead of considering that genetics may affect how certain girls react to pictures of emaciated celebrities, the media typically focuses on the imagery as the sole culprit. "Were this true," Cynthia Bulik advised New Jersey's Office of Managed Care, "all young girls would develop anorexia nervosa, as exposure to these unhealthy ideals is ubiquitous."

It's important to note that about half of all people who develop eating disorders do fully regain their physical health. After holding my weight below one hundred pounds for seven years, I eventually recovered on my own. But without treatment, the risk of relapse is high. One fifth of eating disorder patients remain chronically ill for decades.

My friend Cindy Bitter became anorexic at fourteen, in 1967. What began as a desire to lose weight to look good snowballed. By eighteen she stood 5'1" and weighed just 59 pounds. Yet as she recently told me, "I was lucky. In those days, insurance paid for long-term treatment and didn't restrict my doctors." Those days predated the practice by insurers, beginning in 1983, of determining covered benefits according to "diagnostic-related groups" instead of the recommendations of the patient's own physician.

"I was in and out of hospitals," Cindy recalled, "anywhere from three to thirteen months at a time, for fifteen years. That kept me alive until I was able to get better."

What if today's insurance policies had been in effect when she got sick? She replied without missing a beat, "I'd be dead now."