The Need for Increased Education, Effective Treatment and Prevention
By Susan Blumenthal,MD and Beth Hoffman*
This week (February 21st--27th) is National Eating Disorders Awareness Week, seven days designated by the National Eating Disorders Association (NEDA) to raise awareness about the prevalence, impact and public health significance of these disabling and potentially life-threatening illnesses.
When most people think of someone with an eating disorder, the first image that comes to mind is often that of a young, emaciated woman. But this image does not accurately reflect the clinical picture of eating disorders in America and worldwide. Eating disorders are mental illnesses characterized by abnormal eating behavior and obsessive thoughts about food and weight. Someone with an eating disorder can be normal weight, underweight, or overweight. Eating disorders are pervasive, affecting up to 24 million Americans and 70 million individuals worldwide.1 Once thought of as diseases of upper-middle class adolescents, recent research has shown that eating disorders cross racial, religious, ethnic, and socio-economic lines and that 10-15% of those suffering with eating disorders are men.2,3 Anorexia is now the 3rd most common chronic illness among adolescent women, and the percentage of college students dieting, purging, or taking laxatives to lose weight has increased in the past decade from about 28 to 38%.4, 5
The current Diagnostic and Statistical Manual of Mental Disorders (DSM-1V) of the American Psychiatric Association classifies eating disorders into three categories: 1) anorexia nervosa, which is characterized by excessive weight loss (below 85% of expected weight for height) due to food restriction and/or purging behaviors such as vomiting or laxative abuse; 2) bulimia nervosa, which involves binging (eating large amounts of food at once) and then compensating for the binge through purging, overexercising, or fasting; and 3) an eating disorder not otherwise specified (EDNOS), a category that includes binge eating disorder (where individuals binge but do not purge and therefore often gain weight) as well as those who engage in eating disordered behaviors but do not meet the specific criteria for anorexia or bulimia (for example, someone who restricts food intake but is not below 85% of expected weight for height). EDNOS is the most common diagnosis among these three categories, and many individuals with an eating disorder will cycle between the three diagnostic categories over the course of their illness.6
The exact etiology of eating disorders is unknown, but both genetic and environmental factors play an important role in their development. Statistics show that 35% of normal dieters progress to pathological dieting, and of those, 20-25% progress to an eating disorder.7 Some postulate that the obsession in Western popular culture with dieting and super thin models and actresses plays a role, but not everyone exposed to these images develops an eating disorder. What then makes some people develop these illnesses, while others do not? Research reveals that certain biological and psychological traits can make individuals more vulnerable to developing an eating disorder, especially in response to trauma or cultural stressors. Scientific studies suggest a genetic component, with recent molecular biology studies showing that genetic variants in brain receptors related to mood might increase the risk of developing an eating disorder.8
Health consequences of these illnesses are serious and include low or irregular heart rate (from dehydration and/or electrolyte imbalances), osteoporosis, dizziness, kidney problems, esophageal tears, seizures, and gastrointestinal disturbances. Many of these complications can occur at any weight, and at any point in the course of illness. In 2009, a comprehensive study of death rates for all eating disorders revealed mortality rates (from the medical consequences and suicide) of 4% for anorexia, 3.9% for bulimia, and 5.2% for EDNOS.9 This study highlights the high death rate for all forms of eating disorders, and draws attention to the fact that EDNOS (sometimes viewed as ''less severe'' than anorexia or bulimia) can be just as dangerous and deadly.
Recent scientific literature reviews have placed the full recovery rate (meaning no physical or mental eating disorder pathology is present at time of follow-up) at approximately 45% for anorexia and bulimia.10, 11 That means, however, that more than half of people with these disorders do not fully recover from these illnesses.
Eating disorders are complex illnesses that require multifaceted treatment including mental and physical health care interventions. Effective treatment of eating disorders requires medical and nutritional stabilization, psychotherapy, and treatment of comorbidities (such as depression or substance abuse). It is also critical that family and close friends be involved in the treatment plan.
Severe cases of eating disorders may require hospitalization, preferably in an inpatient unit or residential program specializing in the treatment of these illnesses. Currently, there is a trend to curb costs by providing shorter inpatient stays followed by treatment in partial or day hospitalization programs, Patients are often discharged from inpatient units once acute medical problems are resolved and when anorexic patients have achieved 85% of ideal body weight, meaning that many patients are still ill at the time of inpatient discharge, particularly with regards to the psychological components of the disorder. Several studies show that the combination of inpatient and partial hospitalization programs can provide good outcomes for some patients, but for patients with a more chronic eating disorder, providing longer inpatient stays may both improve long term outcomes and also save money in the long run by preventing recurrence.12 For some adolescents, family based therapy (where parents supervise renutrition) may be an alternative to inpatient programs.13
Yet, only an estimated 33% of people with anorexia and 6% of individuals with bulimia receive mental health care.14 To improve health outcomes, increased public and health care professional awareness is needed about eating disorders to ensure early detection and effective treatment. Enhanced insurance coverage for these illnesses is urgently required along with more evidenced-based treatment. Over the past few years, there have been several high profile lawsuits where major insurance companies, after being sued by families for not providing coverage for eating disorder treatment, were required to pay millions of dollars in denied claims and provide the same coverage for eating disorders as provided for physical illnesses.15
Clearly, there is also a critical need for more research to increase knowledge about the causes of eating disorders as well as to develop and test psychotherapeutic, nutritional and medical approaches that will ensure effective, evidenced-based treatment. Unfortunately, there is currently inadequate research funding for eating disorders. In 2005, the National Institutes of Health spent only $12 million on anorexia nervosa research, which averages only $1.20 per affected individual, an amount far lower then that spent on most other major mental illnesses. 16
In addition to developing more effective treatments, there must be an emphasis on prevention. Americans spend over $40 billion a year on diet products, and as many as 50 percent of adolescent females and one third of teenage boys report using unhealthy measures, such as fasting, vomiting or laxative abuse, to try and lose weight.17 Moreover, 40 percent of overweight college-age women and roughly 20 percent of overweight college-age men engage in disordered eating behaviors in an attempt to be thin.5 These statistics highlight the importance of emphasizing a well-balanced lifestyle with nutritious food and appropriate amounts of physical activity as opposed to counting calories and excessive time at the gym in the fight against eating disorders.
In 2009, the Federal Response to Eliminate Eating Disorders (FREED) Act was introduced in Congress. This legislation would provide funding for research, treatment, and prevention efforts, and require insurance companies providing health coverage for physical illness to also provide coverage for eating disorders in accordance with national standards of care. The bill, which remains in committee in the U.S. House of Representatives, would also offer grants to universities that train health professionals in how to identify, prevent, and treat eating disorders.18
Additionally, there is hope that the Mental Health Parity and Addiction Equity Act, passed in 2008, will help improve insurance coverage for eating disorder treatment. This law ensures that the financial requirements, treatment limitations, and out-of-network benefits be the same for mental and physical illness in large group health insurance plans. However, many insurance companies continue not to cover eating disorder treatment, especially for patients diagnosed with EDNOS.19 A critical component of health care reform is to ensure parity for coverage of mental illnesses such as eating disorders that require both physical and mental health care to ensure full recovery.
The goal of Eating Disorders Awareness Week is to mobilize the public, professionals, scientists and policymakers to learn more about the impact and dangerous health consequences of these disorders and to take action to ensure early detection, intervention and treatment. A recipe for eradicating eating disorders will require more research, coordinated and integrated clinical services, and sufficient insurance coverage for treatment of these illnesses. Additionally, individuals, families, schools, businesses and communities must join together at the local and national levels to promote a culture of healthy eating and physical activity. This week provides a time to shine a spotlight on eating disorders and shatter the misconceptions and stigma that have surrounded these illnesses for all too long.
* Beth Hoffman graduated magna cum laude from Brown University. She is a medical student at the University of Pennsylvania School of Medicine and a former Health Policy Fellow at the Center for the Study of the Presidency and Congress in Washington D.C.
Rear Admiral Susan Blumenthal, M.D. (ret.) is the Director of the Health and Medicine Program at the Center for the Study of the Presidency and Congress in Washington, D.C., a Clinical Professor at Georgetown and Tufts University Schools of Medicine, and Chair of the Global Health Program at the Meridian International Center. She served for more than 20 years in health leadership positions in the Federal government, including as Assistant Surgeon General of the United States, the first Deputy Assistant Secretary of Women's Health, as a White House Advisor on Health, and as Chief of the Behavioral Medicine and Basic Prevention Research Branch at the National Institutes of Health. Dr. Blumenthal has received numerous awards including honorary doctorates and has been decorated with the highest medals of the US Public Health Service for her pioneering leadership and significant contributions to advancing health in the United States and worldwide.
1) The Renfrew Center Foundation for Eating Disorders, "Eating Disorders 101 Guide: A Summary of Issues, Statistics and Resources," published September 2002, revised October 2003
2) Prouty AM, Protinsky HO, Canady, D. (2002). College women: eating behaviors and help-seeking preferences. Adolescence, Summer, 22-30.
3) Carlat, DJ (1997). Review of Bulimia in Males. American Journal of Psychiatry, 154.
4) US Department of Health and Human Services Office on Women's Health, Eating Disorder Information, 2000.
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15) Rispoli, M. ''Horizon to pay landmark $1.2M settlement in eating disorder lawsuit.'' 22 April 2009. NJ.com. 4 Feb 2010.
16) National Institutes of Health. (2005). Retrieved November 7, 2005, from http://www.nih.gov/news/fundingresearchareas.htm
17) Reisner, R. "The Diet Industry: A Big Fat Lie." Jan 2008. Business Week. 30 Jan 2010.
18) "Legislative Update." 25 Feb 2009. Eating Disorders Coalition. 4 Feb 2010.
20) Ellin, A. Narrowing an Eating Disorder.'' 18 Jan 2010. New York Times. 5 Feb 2010.