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Eating Disorders Treatment Programs for Arkansans Thin but Expanding
In terms of patients' relationships with food, obesity is only one side of the story. The other side, that of eating disorders such as anorexia and bulimia, is much less heard, and even more misunderstood. Eating disorders affect more than 10 million women in the United States and more than one million men. Depending on the study, the national average for eating disorders varies between .5 to 3.7 percent of the population for anorexia nervosa and between 1 and 4.2 percent for bulimia nervosa. A larger percentage have something called eating disorders not otherwise specified, who have a mixture of the two diseases or don't have all the strict criteria required for diagnosis. No comprehensive statistical data exists for how many Arkansans have eating disorders, but if the national average held true in Arkansas, even the conservative, low-end numbers indicate that among Arkansas women there could be as many as 7,000 who are anorexic and more than 14,000 who are bulimic. Dr. Maria Portilla, associate professor of pediatrics in College of Medicine at UAMS and medical director of the Eating Disorders Clinic at Arkansas Children's Hospital, has been working with eating disorders for 14 years, and is one of the few eating disorder professionals in the state. Portilla emphasized there is no statistical estimate for Arkansas, and the data would be highly variable between metropolitan and rural areas. Determining prevalence of eating disorders can be problematic anywhere, she said. Patients with eating disorders are characteristically in denial about their issues and resist medical intervention when at all possible. Even when eating disorder patients do present themselves to physicians for treatment, for insurance coverage purposes physicians often list individual symptoms on the chart rather than the overarching disease. Whatever the number of Arkansans affected, Portilla said only two outpatient programs dedicated to eating disorders exist in the state — her adolescent program at Children's and UAMS' brand-new clinic for adults. Nowhere in Arkansas is there a residential treatment program, and the two current outpatient programs are both located in Little Rock. For all other parts of the state, patients with eating disorders must depend on scant local expertise, travel weekly to Little Rock, or go out of state to residential programs that can cost families $100,000 for just two months. A Dearth of Expertise Portilla said she could name a handful of physicians with the specialized education necessary to treat eating disorder patients, but the need for more is great. "We see up to 150 adolescents each year in our clinic," she said, "but we've got a real problem when they live too far to come weekly for treatment. I know of two or three doctors in northwest Arkansas who are willing to follow eating disorder patients, but they're the exception. Most physicians are understandably very hesitant to take them on." That's because what these patients do eat up is time. Unlike typical patients who can be seen in 15 minutes, eating disorder patients require a bare minimum of 20-30 minutes with the physician, time most physicians simply don't have to give. "These are patients that have so many complications, and they have a lot of questions, they want a lot of education, there's a lot of psychological things going on in these families," Portilla said. "Because of the time issue, the complexity of the disorder, and the psychological overlay, they avoid treating these diseases." Like diabetes, obesity, pain management, and many other specialties, for eating disorder patients the ideal treatment is a long-term interdisciplinary team approach. The three basics of treatment are a therapist, a nutritionist, and a physician to keep track of the medical complications. Family therapy is also recommended when possible. Any of these therapies alone is insufficient. Dr. Jan Dean, a UAMS psychologist, has led support groups for Portilla's patients and specializes in working with clients with eating disorders and obesity. Besides discussing their specific eating disorder behaviors such as binging and purging, Dean works to help her clients achieve a deeper level of mental health. "When they're not focusing on their eating disorder, what's their life about?" she challenges them to identify. "What do they want more of? How can they start moving in the direction of more well rounded health — mind, body and spirit? It's a medical condition, and it's also a psychological condition and both of them need to be treated." Portilla agreed. "This is a psychiatric illness that affects the body significantly, and a lot of people don't realize that," she said. "Even teenagers can become infertile, can develop osteoporosis, can have irregular heartbeats that could kill them. It's a potentially fatal disease — the most fatal of all mental health diseases. You need a multi-disciplinary approach for this illness, but it's almost impossible to find that here outside our program." UAMS Steps Up to the Plate That's exactly why UAMS decided to start an eating disorders clinic for adults, said Ann Brown, LMSW and director of the new program. She is also clinical coordinator for UAMS Psychiatry's Program for Young Adults, the office from which the eating disorders clinic is being launched. She said too many young adults to ignore, especially college-aged women, were coming in with eating disorder issues. "We've been able to treat people in the past, but this is the first time we've pulled together the medical piece, the nutrition piece, the therapy piece," Brown said. "This is the first attempt at UAMS to have a comprehensive team to treat this disorder, and the main reason we're doing it is that there aren't a lot of other options for patients with these disorders. In other states, you'll find lots more treatment options." Creatively working with the hospital's existing Internal Medicine department allowed UAMS to find the resources for the program. "They're doing the physical and medical exams, and we're doing the mental health and psychiatric part of it," Brown explained. "But it will be clinic-based, so they come in and see their therapist and if they need an EKG, they can also do the EKG, and so on, so it's sort of a full-service shop." In addition, the program is working closely with Portilla's program at Children's, sharing staff and resources in some instances. "We're able to pick up where they leave off, with the 18-plus ages," Brown said, "but we have no upper age limit because there's just so many women, and even some men, needing these services." Support the Support Groups? Unsurprisingly, there is also only a smattering of eating disorders support groups in the state. What is surprising is that this could be a good thing. Portilla said that too frequently, people without professional eating disorder qualifications become support group leaders. Although she recognizes patients' desire to meet with others going through similar healing processes, she is wary of peer-led groups, or those with well-intentioned, but untrained counselors. "It worries me that people might say, 'Oh, let's just meet,'" Portilla said. "And these people don't realize that that patient looks like she's about ready to keel over. Or won't wonder if the patient might have other disorders like bipolar or severe depression. Eating disorders touch on so many areas and complications, the therapy really needs a qualified professional supervising it." Dean said her latest eating disorders group dissolved after the newspaper stopped printing the support group meeting notices that let people know when her group would be gathering. She now knows of one peer-led group in Conway, but no others. Portilla said that skepticism aside, support groups can do a lot of good for eating disorder patients. "If you have a support group of people who know what they're doing," she said, "that's excellent." Freshman 15 Backlash One place with a definite need for support groups and other eating disorder resources is the state's colleges. "I hope that there are support groups and staff on college campuses that know when to refer these patients to somebody," said Portilla. "There are just so many patients with eating disorders in college, it's mind-boggling." Indeed, a national poll in September of college campuses reported that nearly 20 percent of respondents believed they had some form of eating disorder at some point in their lifetime. Of these, 75 percent said they had not received any treatment for an eating disorder. Over 55 percent had known someone with an eating disorder. Commented Lynn Grefe, CEO of the National Eating Disorders Association, on the poll, "While it may be back-to-school time, it's also back to basics—doing the best job we can to support these young people in transition. To turn this around, we need to ensure that trained advisors who understand this illness are readily available to college populations." Prognosis for Arkansas Of the many myths surrounding eating disorders, Portilla said the most common was that patients with eating disorders never get better. Dean agreed: "I think early on, there was this notion that people can't get better from eating disorders. I really feel strongly that I'd like to dispute that, because I've seen people who really fully recover, who get over it and move on and have satisfying lives where they have a good relationship with food." The "rule of thirds" applies to eating disorder patients, Portilla said. A third gets completely better, a third will reach a functional level of health, and a third will never recover, and will at best go from hospitalization to hospitalization, never addressing their core issues. In about 20 percent of cases, eating disorders are fatal. Recovery, when it does work, is a slow and expensive process. Eating disorder treatment typically lasts 1-3 years, though it is not unusual for patients to need 5-7 years. With insurance frequently cutting off after five mental health sessions per year, many families can't afford the treatment their loved ones need. Intensive residential programs can sometimes shorten this time a bit (though not necessarily, by any means), but even families with substantial resources often must use retirement or college funds to finance out-of-state residential treatments. Medicaid patients aren't covered for out-of-state residential eating disorder treatments at all. Portilla hopes to one day help establish an inpatient residential eating disorder facility in Arkansas. "There are some people who are interested in helping me start something like that, so I'm actually excited right now that there might be a possibility," she said. "There's definitely people with money in this state, but very little of the money is going into anything like eating disorders. I often wonder why there aren't more fundraising efforts for this. We definitely have a need for it. It's way overdue." Legitimately Sick Eating disorder parents often send the wrong message to underweight teen daughters, Portilla said. "Even insurance companies instruct me to tell the parents to make her eat," she said, clearly exasperated. "If that worked, we wouldn't have a problem. We've had patients who collected their vomit in bags under their bed. It's amazing the behaviors this disease brings about. That's how you know it's a psychiatric illness." There's also a lot of misunderstanding, Portilla said, about patients willing this disease on themselves. "The majority of patients don't want this, they want to be done with this, especially the binging and purging," she explained. "They want it to stop, but it's a true illness. You can't just stop this. They might have started dieting on their own, but the disorder takes on a life of its own. After a while, they're not making it happen; that's why they need treatment." More treatment, too often, than Arkansas has to offer. January 2007 Tags:NoneBookmark:
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