Help for eating disorders:Proposed law would requireinsurers to cover treatment

DeKALB - A 46-year-old mother of three, Cristy White is desperate for a dietitian. But she can't afford one, and even though working with a dietitian may heal her, insurance won't cover the costs. “I might cry just talking about it,” the Aurora resident said. “This is a full-time job. It's overwhelming.” White is referring to her struggle with anorexia nervosa, a battle she's been fighting since 2000. She considers herself in recovery from the disorder, which she said was initially spurred by a period of anxiety resulting from the death of her father and other stressors. “All (of a) sudden, I kind of got hit with a lot,” White said. “One way I used to cope with being so overwhelmed with so many different kinds of emotions was to go ahead and restrict food. Then it snowballs and it starts to control you.” Eating disorders take physical and emotional tolls on the people who have them. But getting the type of treatment most people need to beat them - more than 12 million Americans are estimated to have an eating disorder - is tough for many to afford. The average price tag of inpatient treatment for an eating disorder is between $500 and $2,000 a day, said Fran Tierney, psychotherapist at the Ben Gordon Center in DeKalb. But Illinois lawmakers have moved to ease the financial burden. In May, the General Assembly approved legislation that would require insurance companies to pay for treatment of bulimia and anorexia. State Sen. Brad Burzynski, R-Clare, and state Rep. Robert Pritchard, R-Hinckley, both voted in favor of it. If signed by Gov. Rod Blagojevich by the end of August, House Bill 1432 would add anorexia and bulimia to the list of “serious mental illnesses” covered under the Illinois state mental health insurance parity law. The governor's office did not immediately return phone messages left by the Daily Chronicle seeking comment. If approved, Illinois would become the 17th state to mandate the coverage. The measure would require coverage for 45 days as an inpatient and 60 outpatient visits each calendar year. Meal-by-meal struggle Eating disorders know no socio-economic, ethnic or national borders, therapists said, and they have the highest mortality rate of any mental illness, therapists said. About 85 percent of sufferers report the onset of illness by age 20. And nearly 80 percent of those who have eating disorders experience symptoms for one to 15 years, according to the National Association for Anorexia Nervosa and Associated Eating Disorders, or ANAD. “It's the third-most-common chronic illness among adolescents,” Tierney said, adding that eating disorders most commonly affect teen and college-age females. “I don't think (DeKalb) differs from the national statistics, particularly because we are a university town.” One in five women struggle with an eating disorder or disordered eating, according to the National Institute of Mental Health. Eating disorders can lead to malnutrition and can damage the kidneys and the heart or result in total organ failure. Drastic weight fluctuations bring stress to every part of the body, therapists said. Most people with eating disorders don't reveal their total weight loss to peers because it can facilitate others' disorders. “We'll say it's an alarming amount,” said therapist Danae Ganos-Arthur, referring to one of her current patients. “The best example I can give is that I went to get her from the waiting room one day, and I looked right past her. Every week I see her, there's such a difference in appearance. It's frightening. I'm frightened for her.” White said her condition resulted in poor circulation, dry and brittle hair, extreme fatigue and irrational thinking. “You just don't have any stamina,” she said. “It gets to the point where you can't walk around the block. The symptoms are debilitating.” Both therapists and White agreed that patient relapse following treatment is common. Better insurance coverage may improve the success rate of recovery, which is less than 50 percent for those who seek help, according to ANAD. Few people come forward to even try to seek treatment, Tierney said. “It's a very sensitive subject to approach,” she said. “Out of every 10 people who have an eating disorder, one actually receives treatment.” Is it enough? Even if the Illinois measure becomes law, local experts who work with people who have eating disorder said it still may not be adequate for those with extreme cases. “Insurance companies are very sensitive about covering eating disorders, and on some level you understand why, because from a business perspective, it's very expensive,” Tierney said. “Oftentimes, when people are released from an inpatient stay, they would benefit from being there many more weeks or many more months ... but they don't have the coverage.” The best treatment includes an interdisciplinary approach, said Michael Flora, executive director of the Ben Gordon Center. A three- to six-month stay is ideal, he said, where patients have a team that includes a general physician, a dietitian and a therapist. Although the majority of those with eating disorders are in their 20s, Tierney has recently noticed an influx of the disorder among middle-age women, she said. White's symptoms arose later in life, she said, and reasons behind an eating disorder are far from simple. “A lot of people refer to an eating disorder as an ‘it,'” White said. “It invaded your body and it controls you. ... But there's a purpose, and usually that's to help you manage and cope with overwhelming emotions that you just can't process properly. You can't get through them. Controlling what you eat is something you can be successful at even if everything else is falling apart.” For now, White is coping. The notion of totaling the thousands of dollars she's spent on treatment is not one she likes to entertain. But she knows that her life is worth the price. “I have bad days and I have good days. I have bad moments and I have good moments,” she said. “I'm fighting myself like that. One thing I know is I don't want to go back to treatment. I have a plan. ... I don't want to be 80 years old and like, ‘Oh I can't have a bagel.' “I'm not going to have an eating disorder. I'm going to win.” Did you know? • 1 in 5 women struggle with an eating disorder or disordered eating. • Eating disorders affect up to 70 million people worldwide. • An estimated 10 percent to 15 percent of people with anorexia or bulimia are male. • At least 50,000 individuals will die as a direct result of an eating disorder. • A study by the National Association of Anorexia Nervosa and Associated Disorders reported that 5 percent to 10 percent of those diagnosed with anorexia die within 10 years of contracting the disorder. About 20 percent will die after 20 years, and about 40 percent fully recover. • The average cost for a month of inpatient treatment for an eating disorder is $30,000. It is estimated that individuals with eating disorders need anywhere from three to six months of inpatient care. The cost of outpatient treatment, including therapy and medical monitoring, can exceed $100,000. Sources: National Institute of Mental Health, The Renfrew Center Foundation for Eating Disorders, American Journal of Psychiatry, U.S. Department of Health and Human Services.