Researchers Respond! Effective Treatment of Eating Disorders
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Terry Rustemeyer, R.N. How do I tell you what my heart is so full of, I only have words which I hope can adequately convey my daughter, Melissa, and do justice to her memory. I can close my eyes and see her. She stands 4' 10 and 3/4 inches tall, weighs about 92 pounds, with lightened blond hair, a spring in her step, a smirk on her face and a mischievous glint in her eye. I see a teenager who was all about her friends discovering new boys, playing her music too loud. A girl just being a teenager. She was a loving and caring individual. She was extremely sensitive. She had a quick wit and a cynical sense of humor. She was my protector. If her sister mouthed off to me, she would always tell her not to talk to mom that way. Melissa and Jamie would spend hours talking on the balcony of our home. They were the best of friends. I remember her coming home from school one day and telling me her teacher had asked her to explain Passover to the class. She told me what she said and I laughed because she had mixed the story of Passover and Chanukah together. She laughed and said, "It's OK, Ma. I'm the only Jew in the class and they don't know the difference. I remember the day of her 16th birthday when she came up to me with a big grin on her face, so excited that the boy she liked asked her out. To the outside world, she was a happy, outgoing person who was very self-assured. To those closest to her, she had a private side that hid a dark secret. The secret was that she was bulimic. And she died because of it on July 22, 1999, 11 days after her 16th birthday. Did she think she would die from it? No, because she was 16 years old and invincible. I am a Registered Nurse. Did I think she would die? No. How incredibly naive I was. Melissa weighed 92 pounds when she died, and for her height that was the right weight for her. Outwardly, there was nothing to tell you she was dying and yet she was, piece by piece, over a period of two years. So what you saw on the outside was a beautiful girl, what you didn't see was the electrolyte imbalance that killed her. Melissa began her decent into an eating disorder when she was 14 years old after a boy at school told her she was fat. She wanted to be found out and left me clues. After suffering for two months I found out about her eating disorder and immediately sought help. I brought her to see our family practitioner who spoke privately to Melissa and came out of the room to tell me Melissa promised her she would stop and everything was going to be OK. It is a practice of my health care provider to weigh all patients. I took Melissa twice in one week to see the doctor for a knee problem. I don't understand why I was the only one to notice why she lost 7 pounds in one week. I live in Albuquerque, New Mexico. We are a poor state and usually rank the lowest on any national ratings. Thanks to the hard work and commitment of Senator Pete Domenici this is not the case with Mental Health Parity in the State of New Mexico. And I applaud his effort to make Mental Health Parity legislated at the national level. We desperately need more research and education regarding Eating disorders so that health care providers as well as educators can recognize those at risk. We need research so that we can come up with treatment modalities that are driven by research and not by Insurance companies that will limit or refuse to pay for treatment.
I am a Registered Nurse and I work in the Emergency Department at a teaching hospital, with plenty of resources. Why did the system fail me? But most importantly why did they fail Melissa? Because there isn't enough research and treatment for eating disorders. The last 6 months of Melissa's life were the hardest. I can know look back and see how desperately ill she was.. I would talk with her and see how empty she was inside. We frequently checked Melissa's potassium and it was consistently low so we gave her potassium pills. If she had been a Diabetic and had consistently high blood sugars, she would have been treated aggressively and her diet and level of understanding regarding her illness would have been evaluated. Furthermore, she would not have left the hospital until she was stable regardless of insurance or ability to pay. We do diabetic teaching but no teaching for Eating Disorders. Untreated diabetes can kill, so can untreated eating disorders. Melissa lost the fight but the war rages on through the collective efforts of our educators, healthcare professionals and legislators, we can win this war. In January of the year she died, Melissa's condition deteriorated severely. Her psychiatrist was on vacation, so I called our family doctor for guidance but she had none to give. Albuquerque is not a small town. I looked in the Yellow Pages for help and found only two names that specialized in eating disorders, but neither was taking new patients. I called a social worker I knew and he was able to get her seen right away by a psychiatric resident where I work. Can you imagine those parents that have no resources? I went to find help in the Yellow Pages, not knowing anything about practitioners, and my primary care provider did not have anyone to refer us to. If we had more research and education, our healthcare professionals would have resources and we could become better informed. My husband and I are middle-class professionals, we have another child, if we were told Melissa needed in-patient treatment, we wouldn't have been able to afford it. What a crime to put a price on our children's lives. I can not tell how alone, embarrassed, ashamed and isolated her father and I felt. There is little to no resources for parents and a family of the person with an eating disorder. We became frozen with fear and hopelessness. For the past 6 and a half years, I have had to live the reality that I will never hold Melissa, or hear her telling me, "I love you, Mommy" when she wanted to get her own way, ever again. We now have hope where we once had despair because we have joined the Family Action Council of the Eating Disorders Coalition and we will do whatever it takes to make sure there are no more Melissa's out there. I miss her laugh. I miss her smile. I miss Melissa, with every fiber of my being. Eating disorders can kill. Just ask me, I know. Scott Crow, M.D.
Clearly, one of the great needs in this field is for a larger number of innovative studies identifying better treatments. At present, eating disorders are seriously under-represented among Federally funded biomedical research studies. For example, a search of the CRISP NIH database using the search term diabetes mellitus reveals a total of 666 active federally funded studies for type I diabetes. Similarly, there are 804 active federally funded studies of schizophrenia. By striking contrast, only 54 studies of anorexia nervosa are found by searching in the same way, and a mere 31 studies of bulimia nervosa. All four of these illnesses affect similar numbers of people; all four of these illnesses affect those who have them severely. Anorexia nervosa, bulimia nervosa, and the other eating disorders deserve the same intense research efforts currently being directed toward these other health problems. In addition to simply funding more studies, we sorely need studies, which are larger and yield more convincing, definitive answers. Recent news reports have highlighted advances in the treatment of depression and schizophrenia in studies such as CATIE and STAR-D. A comparison of the size of each of these studies in terms of numbers of participants is quite revealing. For example, CATIE, the study of schizophrenia treatment, enrolled 1,493 individuals. The STAR-D trial, a study of treatment strategies for depression, enrolled 4,041 individuals. It is sobering to think that each of these single studies enrolled more individuals than have been studied in TOTAL in the published world literature on the treatment of anorexia nervosa. CATIE and STAR-D represent extremely useful, “next step” evolutions in our understanding of how to help individuals with depression and schizophrenia. Individuals with eating disorders deserve the same type of intense, large scale research efforts. In the area of the treatment research, the AHRQ report is a clear call to action and I would like to highlight several important points. First, there is a desperate need for large, definitive trials of treatments for anorexia nervosa. Anorexia nervosa is common, carries the highest mortality and the highest suicide rate of any psychiatric illness, and yet is one of the psychiatric illnesses we least know how to treat. Moving quickly to find more effective treatments will literally be life saving. Second, in order to guide studies of anorexia nervosa (and the other eating disorders) we need to better understand the changing demographics of these conditions and develop our interventions accordingly. For example, there are now many reports of anorexia nervosa occurring in women of wider age ranges (both younger and older), and men now seek treatment more often than they once did. We must improve awareness among practitioners that these are not white upper-middle class disorders and develop treatments that are appropriately tailored for women and men across the life coursed. . Third, while there is a need for intense focus on anorexia nervosa, we cannot stop making progress on treatment for bulimia nervosa and binge eating disorder. Much has been learned, and effective psychotherapy and medication treatments are available. However, whether measured by the speed with which treatments work, or the percentage of people for whom they work, or the persistence of treatment response, the good progress we have made is nowhere near good enough. Finally, there is the important issue of treating individuals with “atypical” eating disorders, also known as eating disorders, not otherwise specified. These individuals have important and debilitating eating disorder symptoms but do not fit neatly in to our usual diagnostic categories. At present, we know virtually nothing about how to provide help to these individuals and we must make assumptions based on what we know can be helpful in anorexia nervosa or bulimia nervosa. This situation must change; this diagnosis is actually more commonly made than anorexia nervosa or bulimia nervosa in most clinics. What we call “atypical” is actually quite typical, and we need to learn how best to help. Changes must also be made at the level of treatment provision. Most importantly we must improve our efforts to ensure that providers access and utilize the rapidly growing knowledge base about effective treatments. This is often referred to as the use of “evidence-based treatments” and this is very different from simply presenting evidence on numbers of people who get better with a given treatment (as sometimes happens now. Evidence-based treatments (that is, treatments that have been tested in scientifically rigorous designs and shown to work better than no treatment, or better than being on a waiting list for treatment, or better than other comparison treatments). If any of us were diagnosed with and illness-cancer for example, we would want, expect, and in fact demand to be treated using approaches that have been definitively shown to be helpful. Individuals with eating disorders deserve no less. Armed with this expanding knowledge base about treatments, the final step is improve access to these treatments. Parity of coverage for eating disorders and other psychiatric conditions is a cornerstone of this access. A second crucial piece is to develop a system of credentialing to identify those programs, which provide such evidence-based treatments. If increased funding is available, researchers in this field are poised to make discoveries that will transform our approach to eating disorders treatment, and this transformation will save many, many lives. Ovidio Bermudez, M.D.
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It is a pleasure to be here today to talk about the critical need for funding of research on eating disorders and to reflect on the challenges that individuals with eating disorders and their families face in seeking treatment. Terry Rustemeyer’s comments highlight the fact that eating disorders are extremely serious psychiatric illnesses with potentially deadly medical complications. The experiences of her daughter Melissa emphasize how important it is for us to improve our recognition of the eating disorders, and to increase awareness about both the seriousness of these illnesses and the wide variety of people affected by eating disorders. Most importantly, they emphasize the need for progress in the area of treatment research. We must identify even more effective methods of treating eating disorders and find the most efficient and practical ways to provide those treatments. Furthermore, we need to make it easier for individuals with eating disorders and their families to find reputable and effective treatments.
Ovidio Bermudez, M.D., is the Medical Director of the Eating Disorders Program at Laureate Psychiatric Clinic and Hospital in Tulsa, OK. He is Clinical Professor of Pediatrics and Psychiatry at University of Oklahoma College of Medicine and an Adjunct Associate Professor of Pediatrics and Nursing at Vanderbilt University School of Medicine and Nursing. He is Board certified in Pediatrics and Adolescent Medicine. | © 2008 Eating Disorders Coalition for Research, Policy & Action. All Rights Reserved. |