Notoriously difficult to treat, eating disorders may persist for years, wreaking havoc not just on the patient's health and personal relationships but often on family finances, as well.
Hospitalizations for problems caused by eating disorders grew 18 percent from 1999 to 2006, with the steepest rise among children under age 12 (up 119 percent), followed by adults ages 45 to 64 (up 48 percent) and men of all ages (up 37 percent), according to the federal Agency for Healthcare Research and Quality.
Care for these patients can be expensive. Many must be seen on a weekly basis by a team of specialists, including a psychiatrist, a physician and a nutritionist. A residential program costs $30,000 a month on average. And many patients require three or more months of treatment, often at a facility far from home. Even after leaving a specialized program, patients may need years of follow-up care.
Yet most insurers will not cover long-term treatment, and some routinely deny adequate coverage of eating disorders on the grounds that there is not enough evidence on how best to treat them, said Lynn S. Grefe, chief executive of the National Eating Disorders Association.
"Eating disorders pose a unique treatment challenge in comparison to other psychiatric illnesses," said Dr. Evelyn Attia, director of the eating disorders research program at the New York State Psychiatric Institute. "They are not always easy to diagnose, and insurers are often not well informed about which treatments work."
Jeanne P.'s 19-year-old daughter has been battling anorexia for eight years and has tried 10 treatment programs. The family has "great health insurance," said Ms. P, who asked that her full name not be used to protect her daughter's privacy. Still, the best doctors are often not in the insurer's network, she says she has found, and the family's insurance has not always fully covered residential treatment programs.
The result?
"We have totally exhausted our retirement savings on her care," said Ms. P.
If you suspect that a family member has an eating disorder or that you may have one, these steps may help you find treatment you can afford.
EARLY DIAGNOSIS No one knows exactly what causes eating disorders, though genetics and environmental triggers play large roles. Anorexia and bulimia tend to run in families, and obsessive dieters, athletes and performers have a higher-than-average risk for developing these conditions.
Whatever the cause, early intervention is critical.
"Eating disorders can become chronic and more difficult to treat over time," Dr. Attia said.
If you suspect a problem, get a professional evaluation immediately. Call your physician or pediatrician, explain the symptoms and ask for a referral to an eating disorders specialist.
The Academy for Eating Disorders has an online tool that can help you locate doctors and therapists, as well as inpatient and outpatient treatment facilities in your area. Also try the National Eating Disorders Association help line (800-931-2237; 8:30 a.m. to 4:30 p.m. P.S.T.) for questions about treatment referrals and support groups and to learn more about eating disorders.
AT-HOME TREATMENT If it is your child who has received a diagnosis of anorexia or bulimia, you may want to consider family-based therapy, also called the Maudsley method.
Costs are minimal for this therapy because families do most of the monitoring themselves. Under the guidance of a trained therapist, the parent takes primary responsibility for helping a child get back to a healthy weight and normal eating habits. One recent study, published in the Archives of General Psychiatry, found that family-based therapy was more effective than individual therapy at helping children reach full remission from anorexia.
While this approach may be cost-effective compared to residential treatment, the emotional toll on families can be extreme. During the first phase of treatment, which can last a few months, the child needs supervision around the clock, tracking meals, snacks and exercise.
To learn more about how family-based therapy works and to find a trained therapist, go to the Maudsley Parents Web site at www.maudsleyparents.org. To find out how one family used this therapy to combat their daughter's anorexia, take a look at Harriet Brown's book, "Brave Girl Eating: A Family's Struggle With Anorexia."
INSURANCE COVERAGE If a high level of care is required — at, say, an inpatient treatment center — be prepared to take on your insurer. Learn as much as you can about your health policy and about the roadblocks you may encounter while trying to get coverage for specialized care.
The National Eating Disorders Association's Web site has useful guidance on insurance issues in the Parent Toolkit section. It includes tips on how to explain to your insurer that the treatment your child requires is medically sound, how to manage an appeal and sample letters to send to reluctant insurers.
If your insurer balks at your requests for coverage, ask to be assigned a case manager, suggested Marcia Herrin, founder of the Dartmouth College Eating Disorders Prevention, Education and Treatment Program.
A case manager can often (though not always) help you get access to additional care. Insurers normally do not cover nutritional counseling, for example, but a case manager authorized six visits to a nutritionist for one of Dr. Herrin's patients.
If the case manager cannot help you, you will have to take a route familiar to almost anyone who has tangled with an insurer. Get in touch with your employer's human resources department, and ask them to go to bat on your behalf. If your employer and your insurer will not budge, make a formal appeal to your insurer. If your appeal is denied or not answered, contact your state's insurance commissioner or even your representative in Congress.
Extreme though that may sound, it has been known to work. Susan M. was able to get her daughter's lengthy residential treatment covered by enlisting the help of her senator's office. An aide called the Department of Labor, and after several more steps, the insurer ultimately agreed to cover the treatment.
You might consider contacting a lawyer for advice on your rights and legal precedents in your state, as well.
FREE TREATMENT Some academic hospitals offer free treatment to individuals who meet specific criteria and are willing to participate in a research trial.
Patients who enroll in Dr. Attia's program at the New York State Psychiatric Institute, for instance, do not pay a dime and can stay at the treatment center as long as they need to, but they must agree to answer surveys and stay in touch with the facility after they check out. All patients receive the best evidence-based treatment, and some may be involved in trials that assess physical activity or different psychotherapy approaches.
To find research programs, go to the Web sites of the National Eating Disorders Association and the Academy for Eating Disorders. Also, try ClinicalTrials.gov, which lists federally and privately supported research trials conducted worldwide.
FINANCIAL ASSISTANCE If you have limited resources, some treatment programs will provide financial assistance. Be sure to ask about it.
A few foundations also offer scholarships. Moonshadow's Spirit, for instance, offers financial assistance to individuals who are seeking inpatient or partial hospitalization programs. The Kirsten Haglund Foundation and the Manna Scholarship Fund also offer grants to individuals in financial need.
Keep in mind that when aggressive intervention happens early, full recovery is possible. One notable study by researchers at the University of California, Los Angeles, found that 76 percent of anorexic adolescents had fully recovered from the disorder within 10 to 15 years of their initial hospitalizations.
