By Courtney E. Martin
Thursday, April 27, 2006
About 35 million American girls and women have eating disorders but treatments are mostly limited to private clinics and pricey outpatient therapies. Many patients say their insurance cuts off payments for adequate treatment.
(WOMENSENEWS)--Hannah is 16 years old and doesn't want her real name to be used for this article because it might antagonize her insurance company. Despite being a reflective and expressive teen, Hannah couldn't explain her constant nausea and rapid weight loss, which began bothering her in 2005 and left her at one point at 98 pounds. Her incoherence was in itself another symptom. Many young women are initially unaware of and confused by their own dangerous eating behavior.
Hannah's nutritionist mother, Kay, and doctor father, Steven (also pseudonyms), guided her through a battery of expensive tests to rule out intestinal disease. Thousands of dollars later, Hannah was in weekly therapy for anorexia nervosa.
After only a couple of weeks in outpatient therapy, Hannah's counselor suggested a weight cut-off for inpatient admission. Hannah asked, "Do I have to wait until I get to that weight? I'd rather go sooner."
Hannah's question was more loaded than she knew.
Twenty years ago the only place a girl like Hannah with an eating disorder could turn was to locked psychiatric facilities, where patients were often forcibly fed, medicated and even given shock treatments. The Renfrew Center of Philadelphia was the first residential treatment center in the United States when it opened in 1985, but hundreds have followed since, creating a modern eating disorder industry to treat the 10 million American girls and women currently afflicted with anorexia or bulimia and the 25 million afflicted with binge eating disorder.
These generally high-end centers emerged as it became clear that public hospitals were ill-equipped to deal with the complexity of eating disorders. Anorexia, especially, is notoriously difficult to treat, requiring nutritional counseling, therapy and often prescription drugs. Even with treatment, only 60 percent of those with eating disorders fully recover, 20 percent have partial recoveries and 20 percent do not recover.
Although eating disorders used to be thought of as a wealthy, white woman's disease, Dr. Ruth Striegel-Moore at Wesleyan University in Middletown, Conn., documented in a 2000 study that black women are as likely as white women to binge and purge, and even more likely to fast or abuse laxatives or diuretics.
Effective eating disorder treatment is simply out of financial range for most lower and middle-income Americans, who must depend on inadequate insurance benefits, relatives and second mortgages to heal their loved ones at private clinics or settle for programs at public hospitals that are still expensive and not considered the best.
The National Association of Anorexia Nervosa and Associated Disorders in Highland Park, Ill., estimates the average cost of private inpatient treatment at $30,000 or more a month.
Further, most insurance companies have an annual cap on how many days a client can benefit from in-patient care. This is often between 15 and 30 days, although the average treatment period for eating disorders is between five and seven years.
Before the rise of health maintenance organizations and cost-conscious managed-care programs, the average stay at Renfrew was seven to nine weeks; today the usual stay is only two to four. Insurance companies often argue that it is in their best interest to keep costs as low as possible, especially in a treatment field that is still proving itself largely ineffective and expensive. The Renfrew Center offers case-by-case sliding scales based on need.
A 1999 survey by the National Association of Anorexia Nervosa and Associated Disorders and Glamour magazine of 109 top eating disorder experts in the nation found 100 percent believed some of their patients suffered relapses in their conditions as a direct or indirect consequence of managed care coverage limits. Without treatment, up to 20 percent of people with serious eating disorders die. With treatment, that number falls to 2 to 3 percent.
Though bulimia and anorexia are defined as psychological diseases, insurance companies give and withhold treatment based on such physiological criteria as weight, blood pressure and electrolyte balance, which indicates healthy levels of sodium, potassium and calcium in the body.
When a patient reaches 75 percent of her normal weight they still may be very sick, says The Renfrew Center insurance manager Lisa Mann. "Our doctors may feel that for 100 other reasons this patient needs to continue treatment."
Mann reports that the care managers at most insurance companies are mandated to ignore complex psychology during a "medical necessity review" to determine whether a patient warrants treatment.
Hannah's parents got her to The Renfrew Center after their insurance company--one of the majors in the industry--agreed to pay for 21 days at $1,100 a day. "At the time, we thought it was great," Kay says. "We had no idea that was a drop in the bucket."
After Hannah's first 17 days there, the insurance withdrew their 21-day offer, claiming that Hannah was no longer in a "medically emergent state" as she was at 75 percent normal weight.
Instead the company offered to pay the cost of her inpatient services, leaving Steven and Kay to pick up the other $300 a night for keeping her there. That went on for 10 days. Hannah seemed to be making progress, but her clinicians thought she needed another week and a half to ensure her mental stability. The insurance company withdrew all funding after the 27th day.
Unbeknownst to Hannah, Steven and Kay started paying $1,100 a day for the remainder of her time there. "She was aware of it, but we tried to keep her from it," Kay says. "The last thing she needed was guilt about money."
When Hannah returned home her weight was up, but her anxiety was high. She hadn't felt ready to leave. She was to be part of an outpatient program in Manhattan run by Renfrew that cost $800 a day for two meals with support and various one-on-one and group therapy options.
But it quickly became evident to her family that Hannah wasn't getting better. She felt tortured by the daily food choices that "the real world" offered, incapable of negotiating all of her overwhelming emotions, she said.
It was back into treatment for Hannah, but the family debated where to go. Kay, an advocate of organic foods, was unimpressed with the diet at Renfrew where patients are required to eat refined carbs and sugars. Tucson-based Mirasol, a relatively new adolescent program in Arizona, hooked Kay with its whole foods philosophy. The price tag was $57,000 for the minimum two-month stay. Fortunately for the family, which had already diverted almost $15,000 from their savings into treating her, Hannah's grandmother offered to pay.
Hannah still isn't home, five and a half months after her first diagnosis. Kay struggles to articulate her fears: "It is unimaginable that she is still so socked in to so much pain. It is unbearable." She paused then and continued thoughtfully, "It can't be unbearable because I have to bear it."
Courtney E. Martin is a writer, teacher and filmmaker living in Brooklyn. She is currently working on a book on her generation's obsession with food and fitness, titled "Perfect Girls, Starving Daughters," which will be published on Simon and Schuster's Free Press in March of 2007. You can read more about Courtney's work at http://www.courtneyemartin.com
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National Eating Disorder Association--
Eating Disorders Survival Guide:
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