Eating Disorders Statistics

Eating Disorders 101 Guide: A Summary of Issues, Statistics and Resources About Renfrew: The Renfrew Center Foundation (RCF) is a national nonprofit organization working to advance the education, prevention, research and treatment of eating disorders. The RCF is unique because we are an eating disorder nonprofit linked to treatment centers, allowing an on-going connection between patients, families and professionals. To learn more about The Renfrew Center Foundation or to download other Renfrew Action Guides, visit www.renfrew.org or call 1-800-RENFREW. About The Action Guide: One way The RCF helps accomplish our mission is by educating people in recovery and their families on how they can affect change on both a local and national level. Our staff members compiled this document as a resource for reporters, public officials, students and others who are interested in learning more about eating disorders. We turned to national mental health groups for information. Calls to Action are posted on our website under the “News” section; please look there for any action need. Additionally, we have a Renfrew Action Network which people in recovery, families, friends and professionals are encouraged to join (visit our website to join). We hope this guide will help you understand the issue and serves as a guide for action. Suggested Citation: The Renfrew Center Foundation for Eating Disorders, "Eating Disorders 101 Guide: A Summary of Issues, Statistics and Resources," published September 2002, revised October 2003, http://www.renfrew.org. STATISTICS Prevalence1:  1 in 5 women struggle with an eating disorder or disordered eating.2  Up to 24 million people suffer from an eating disorder in the United States.3  Up to 70 million people world wide struggle with an eating disorder.4 1 Prevalence and mortality rates of eating disorders are not tracked by the US government. Therefore, all estimates are based on studies conducted by private researchers. We have listed sources in this particular footnote that reference prevalence rates in their studies/articles: Culberg,J., & EngstromLindberg,M. Prevalence and incidence of eating disorders in a suburban area. Acta Pyschiatricia Scandinavica, 1998, 78, 314-319. Fisher M, Golden NH, Katzman DK, et al. Eating disorders in adolescents: A background paper. Journal of Adolescent Health, Vol. 16, 1995. Garner, DM, Garfinkel, PE (Eds). Handbook for treatment of eating disorders. 1997. New York: Guilford Press. Hoek, HW. Review of the epidemiological studies of eating disorders. International Review of Psychiatry, 1991, 5, 61-74. The US Dept. of Health & Human Service's Office on Women's Health, www.4women.gov & The US Dept. of Health & Human Service's National Institute of Health www.nimh.nih.gov Yager J, Andersen A, Devin M, Mitchell J, Powers P, Yates A. American Psychiatric Association practice guidelines for eating disorders. American Journal of Psychiatry 1993; 150:207-28. 2 Eating disorders include anorexia, bulimia and binge eating disorders (classified as mental illnesses in the DSM IV). Disordered eating is not a classified mental illness. Disordered eating is characterized by atypical behaviors such as continuous restrictive dieting, binging and purging, yet the individual does not fit all the criteria to have a diagnosable eating disorder. It has been estimated that up to 25 million men and women in the US struggle with disordered eating or sub-clinical eating disorders. 3 This estimated figure was created by utilizing current US Census numbers and statistics from the National Institute of Mental Health’s (NIMH) guide, Eating Disorders: Facts About Eating Disorders and the Search for Solutions (i.e. 3.7% females suffer from Anorexia, 4.2 females suffer from Bulimia and 5% of males and females suffer from Binge Eating Disorder. The 24 million figure combines all three eating disorders, anorexia, bulimia and binge eating disorder. The figure of 8-10 million people suffering from an eating disorder is a common figure used, however this underestimates by not including all ages, both genders and all three eating disorders. 4 http://www.eatingdisorderinfo.org/menu.html: www.renfrew.org Advancing the education, prevention, research and treatment of eating disorders.   Almost 50% of people with eating disorders meet the criteria for depression.5 Nearly half of all Americans personally know someone with an eating disorder.6 Mortality Rate7:  Eating disorders have the highest mortality rate of any mental illness.  The mortality rate associated with anorexia nervosa is 12 times higher than the death rate of ALL causes of death for females 15-24 years old.  20% of people suffering from anorexia will prematurely die from complications related to their eating disorder, including suicide and heart problems. Access to Treatment:  Only 1 in 10 men and women with eating disorders receive treatment 8 and only 35% of people with eating disorders that receive treatment get treatment at a specialized facility for eating disorders.9  About 80% of the girls and women who have accessed care for their eating disorders do not get the intensity of treatment they need to stay in recovery—they are often sent home weeks earlier than the recommended stay.10 The more important factor is that only once weight is restored to within 90-95% of the normal range, can counseling and medications make a lasting impact. Discharging a patient before than increases chances of relapse. In fact, a patient’s relapse rate is 50% if released while her weight is still below 85%.11 This high relapse rate, during the weight gaining phase of treatment, may be due to patients generalizing that all eating leads to weight gain and become fearful and begin restricting once home.12  96% of eating disorder professionals believe their anorexic patients are put in life-threatening situations because their health insurance policies mandate early discharge.13 Young People:  Anorexia is the 3rd most common chronic illness among adolescents.14  Eating disorders are higher among young women with type 1 diabetes than among young women in the general population.15  95% of those who have eating disorders are between the ages of 12 and 25.16  28% of high school males attempt to gain weight through weight lifting.  25% of college-aged women engage in bingeing and purging as a weight-management technique.  50% of girls between the ages of 11 and 13 see themselves as overweight.  80% of 13-year-olds have attempted to lose weight. 5 The mortality rates are all from the following study, SullivanPF. Mortality in Anorexia Nervosa. AmericanJournal of Psychiatry, 1995; 152(7): 1073-4. 6 Zogby America poll, 2002. 7 American Journal of Psychiatry, Vol. 152 (7), July 1995, pp 1073-1074, Sullivan, Patrick F. 8 Ruth Striegel-Moore, et al., One year Use and Cost of Inpatient and Outpatient Services Among Female and Male Patients with an Eating Disorder: Evidence from a National Database of Insurance Claims, International Journal of Eating disorders 27 (2000). 9 Characteristics and Treatment of Patients with Chronic Eating Disorders, by Dr. Greta Noordenbox, International Journal of Eating Disorders, Volume 10:15-29, 2002. 10 The Renfrew Center Foundation’s observations of trends over the last 17 years. 11 Research conducted by Dr. William Howard at John Hopkins University School. 12 Structured Eating Expereinces in the Inpatient Treatment of Anorexia Nervosa, by J. Sparnon and L. Hornyak. 13 David France, “Anorexics Sentenced to Death,” Glamour Magazine, 1999. 14 Public Health Service’s Office in Women’s Health, Eating Disorders Information Sheet, 2000. 15 Cited in the federal bill, HR Con. Res. 186: National Public Health Initiative on Diabetes and Women's Health 16 Substance Abuse and Mental Health Services Administration (SAMHSA), The Center for Mental Health Services (CMHS), offices of the US Department of Health and Human Services. www.renfrew.org Advancing the education, prevention, research and treatment of eating disorders.   15% of young women in the US who are not diagnosed with an eating disorder display substantially disordered eating attitudes and behaviors.17 About 72% of alcoholic women younger than 30 also have an eating disorder.18 Lesbian, Gay, Bisexual, Transgender Community:  Men and women with higher levels of femininity have greater levels of dieting behaviors.  A major risk factor that places transgendered individuals at risk for developing an eating disorder may be the “obsession” with gender roles and intense discordance with the body and anatomical sex.19  Lesbians are at greater risk of binge eating disorder than heterosexual women.20  Among gay men, nearly 14% appeared to suffer from bulimia and over 20% appeared to be anorexic.21  Among men suffering from eating disorders, 10-42% have identified themselves as homosexual or bisexual (which is higher than the overall base rate of homosexuality in the male population, which is 6%).22 Males:  An estimated 10 to 15% of people with anorexia or bulimia are male.23  Exercise status and sexual orientation are two risk factors for eating disorders in males.24 Men are not immune to outside body image influences. Media images can affect men’s views of their bodies.25 Racial and Ethnic Minorities:  A study presented at the 2002 International Conference on Eating Disorders shows that women of color have many of the same abnormal eating patterns as white females.  Hispanic women were once thought to be immune to these disorders because they had better body images and different cultural expectations than white women. But with the high visibility of Hispanic celebrities like Penelope Cruz and Jennifer Lopez, their cultural expectations are changing.26  In 1994 a study by Essence Magazine, based on 2000 women, concluded that African American women were at risk and suffer from eating disorders in at least the same proportion as white women.  74% of American Indian girls reported dieting and purging with diet pills.27  In Chile, it is estimated that 70,000 women between 14 and 30 years suffer from anorexia nervosa and that 350,000 Chilean women suffer from bulimia nervosa. Despite these alarming numbers, no specialized treatment centers for eating disorders exist in Chile at this present time.28 17 Girl Power!, a public education program of the US Department of Health and Human Services. 18 Health magazine, Jan/Feb 2002 19 Surgenor, Lois and Jennifer Fear. Eating Disorder in a Transgendered Patient: A Case Report, International Journal of Eating Disorders, Vol. 24, No. 4, 1998. 20 Heffernan, Karen. Eating Disorders and weight concerns among lesbians. International Journal of Eating Disorders, Vol. 19, No. 2, 127-138 (1996). 21 International Journal of Eating Disorders 2002;31:300-306. 22 Carlat, D.J., Camargo, CA & Herzog, DB. Eating disorders in males: a report of 135 patients. American Journal of Psychiatry, 148, 1991. 23 Carlat, D.J., Camargo. Review of bulimia nervosa in males. American Journal of Psychiatry, 154, 1997. 24 Anderson, AE. Males with Eating Disorders. 1990. 25 Leit, RA, Gray JJ & Pope, HG. The media’s representation of the ideal male body: a cause for muscle dysmorphia?. International Journal of Eating Disorders. 2002. 26 Eating Disorders on Rise in Hispanics, Associated Press Article, June 30th, 2003. 27 Rosen et al. 28 The Neurosiquiatrico Centre of Santiago. www.renfrew.org Advancing the education, prevention, research and treatment of eating disorders.    A poll by the Argentine Association to Fight Bulimia and Anorexia (ALUBA) indicated that of the 90,000 teenage girls between the ages 14-18 who participated, 1 in 10 suffer from an eating disorder. It is also estimated that eating disorder rates in Argentina are 3 times the amount in the United States. Eating disorders are one of the most common psychological problems facing young women in Japan. Unfortunately, there is still great shame in seeking treatment in Japan; so many people are going undiagnosed.29 Community studies in Hong Kong have indicated that 3-10% of young women suffer from disordered eating to a degree that warrants concern.30 Dieting and Obesity:  95-98% of people on diets gain the weight back (and more) within 3 years—Diets Don’t Work!  There is now a $40 billion diet industry which was non-existent 20 years ago.  Many people suffering from an eating disorder state they were on a diet before they developed an eating disorder.  More than 61% of adults and 14% of adolescents are affected by obesity and some 300,000 die each year from health problems directly related to obesity.31  Obesity is not just something that affects the individual, obesity costs the US $170 billion per year, which includes health care costs and lost productivity.32 Media  The body type portrayed in advertising as the ideal is possessed naturally by only 5% of the American females.  The average model weighs 23% less than the average woman.  90% of all girls ages 3-11 have a Barbie doll, an early role model with a figure that is unattainable in real life.33  47% of girls in 5th-12th grade reported wanting to lose weight because of magazine pictures.34  69% of girls in 5th-12th grade reported that magazine pictures influenced their idea of a perfect body shape.35  Officials, in Fiji, reported a sudden increase in anorexia and bulimia with the arrival of television in their communities.36  The primary reason for following a nutrition or fitness plan was to lose weight and to become more attractive rather than to improve overall health and well being, according to mainstream nutrition and fitness magazines from 1970-1990. 29 Renfrew Center resource document. 30 Disordered eating in three communities in China, a comparative study of female high school students in Hong Kong, Shenzhen, and rural Hunan. International Journal of Eating Disorders 2000; 317-27. 31 CNN interview with Dr. Satcher, Surgeon General, 2001. 32 US Department of Health and Human Services Fact Sheet. 33 Facts on the Media, Dr. Liz Dittrich for About-Face. Although Barbie or the media is not to blame for the development of eating disorders, the media and toys do send messages about unrealistic bodies and reinforce negative body image. 34 Prevention of Eating Problems with Elementary Children, Michael Levine, USA Today, July 1998. Recent studies cite the negative feelings brought on by the magazines disappear for healthy girls and boys after 3 hours, however in individuals that are at-risk of an eating disorder, the feeling stays with them and may trigger eating disordered behavior (e.g. restricting food, binging, purging through exercise, pills, etc.). 35 Ibid. 36 National Journal, Hotline: Daily Briefing on Politics, May 19, 1999. www.renfrew.org Advancing the education, prevention, research and treatment of eating disorders. Pregnancy:  Actively restrictive pregnant anorexics gain an average of 15.8 lbs. during pregnancy compared to 25 lbs. that an average woman gains.  Active bulimics gain an average of 5.7 lbs. during pregnancy.  The average birth weight of a baby born to an active purging anorexic is 4.9 lbs.  In a long term Danish follow-up study of women with anorexia, prenatal mortality was nearly six times greater and incidence of low-birth-weight babies two times greater than expected rates. www.renfrew.org Advancing the education, prevention, research and treatment of eating disorders. CLASSIFICATIONS OF EATING DISORDERS Eating disorders are classified in three areas, anorexia nervosa, bulimia nervosa, and binge eating disorder. All three eating disorders can overlap with one another and share a common thread of depression. Eating disorders occur within men and women and within all economic, racial, and cultural backgrounds. Eating disorders were first classified as a mental illness in the United States in 1980.37 Anorexia Nervosa is characterized by an intentional loss of a substantial amount of one’s body weight (loss of 15% of normal body weight) that is accomplished through severe dieting and/or purging. Anorexics have an intense fear of fat, and their preoccupation with food and weight is often used to mask other issues. Those with anorexia are often characterized as perfectionists and overachievers who appear to be in control. Peak times for onset of anorexia are at ages 12-13 and at age 17, known times of development (although signs of eating disorders in elderly populations are rising). Bulimia Nervosa is an eating disorder where an individual engages in recurrent (an average of twice a week for 3 months) bingeing and purging. Bingeing usually involves a rapid consumption of large amounts of food (binges can range from 1,000-30,000 calories). The bulimic then attempts to rid his/her body of the food by purging (vomiting, laxatives, exercise, and/or fasting). The bulimic may not be visibly underweight and may in fact be slightly overweight due to the binge-purge cycle. Individuals with bulimia are often characterized as having a hard time dealing with and controlling impulses, stress, and anxieties. Onset for this disorder is common in the late teens and early 20s. Binge Eating Disorder (BED), more commonly known as compulsive overeating, is the most newly recognized among the three designated eating disorders. People with this condition engage in frequent binges, but unlike the bulimic, she/he does not purge afterward. Binges are followed by intense feelings of shame, disgust, and guilt. The illness usually begins in late adolescence or in the early 20s, often coming soon after significant weight loss from dieting (reason why dieters often say, “I’ve gained all my weight back and more”). Researchers show that anywhere between 15-50% of individuals enrolled in dieting programs suffer from BED.38 Eating Disorder Not Otherwise Specified is the category that a person might be diagnosed with if they do not fit the criteria for any specific eating disorder. For example:  If a female meets all the criteria for anorexia, but still has regular menses. Or if all the criteria are met for anorexia except the person maintains a normal weight.  For bulimia, all the criteria are met except that the bingeing and purging happen less than twice a week or occur less than three months. Or if the person does not binge, but still engages in purging (e.g. self-induced vomiting after eating two cookies).  Another characteristic is repeatedly chewing and spitting out, but not swallowing, large amounts of food. For more information on the clinical criteria of eating disorders diagnosis, please visit www.apa.org. 37 American Psychiatric Association, Diagnostic and Statistical Manual of Mental Disorders (DSM), Third Edition, 1980. 38 US Department of Health and Human Service’s Office on Women’s Health. Information Sheet on Eating Disorders. February 2000. www.renfrew.org Advancing the education, prevention, research and treatment of eating disorders. ETIOLOGY OF EATING DISORDERS & LONG-TERM EFFECTS A London physician, William Gull, first defined eating disorders as a medical problem in 1873,39 however, eating disorders were not classified as a mental illness in the United States until 1980.40 The etiology of eating disorders is unknown, and the actual number of individuals who suffer from eating disorders is unknown. Utilizing current US Census numbers and figures from The National Institute for Health, eating disorders affect up to 24 million Americans.41 Numbers internationally are unknown, although recent studies detect the same percentage of eating disorder rates in the women from other countries as in the United States.42 Despite the current limited amount of funding for research on biological factors and genetics of eating disorders, researchers are discovering genetic links. Additionally, the latest imaging studies show that as people lose weight, their brain shrinks and “can manifest behaviorally in constricted thinking,” explains David Herzog, M.D., president and founder of the Harvard Eating Disorder Center.43 Furthermore, dieting and purging release endorphins and opioids that individuals becomes addicted to, furthering the destructive cycle. The misunderstanding of eating disorders often leads to the un-detection of the disorder, which places individuals at risk for long-term adverse effects. The earlier a person with an eating disorder seeks treatment, the greater the likelihood of physical and emotional recovery. If not identified early and treated thoroughly, eating disorders can become chronic, debilitating and even result in death. The long-term effects of eating disorders range from teeth erosion, low potassium levels/ electrolyte imbalances, sterility, osteoporosis, heart attacks, heart irregularities, endocrine abnormalities, ruptured esophagi, seizures, anemia, addiction to diet pills, ovarian failure, and retinopathy. This list is by no means exhaustive. Some studies indicate men suffer from more long-term effects. An explanation is that men and people of color are diagnosed much later and therefore live with the disorder for a longer period of time without treatment as well as being turned away from all-female treatment programs. Eating disorders have the highest mortality rate of any psychiatric diagnosis.44 An estimated 480,000 people die every year from complications related to eating disorders. The number is only an estimate because eating disorders and related deaths are NOT tracked by any US governmental agency (unlike other mental and medical illnesses). Eating disorders are a growing public health threat and the lack of an appropriate response has created a lethal situation. 39 William Gull was a physician and medical advisor to Queen Victoria. He focused on anorexia nervosa and distinguished the disease from other biomedical conditions. There is evidence of eating disorders in medieval times and in other ancient texts. 40 American Psychiatric Association, Diagnostic and Statistical Manual of Mental Disorders (DSM), Third Edition, 1980. 41 See footnote on page 1 of this document for information on this figure. 42 Minoo Nobakht and Mahmood Dezhkam, An Epidemiological Study of Eating Disorders, International Journal of Eating Disorders, Volume 28/ Number 3, November 2000. The study suggests the rates of eating disorders and body dissatisfaction among western societies was the same in female adolescents in Teheran. 43 Megan McCafferty, Hollywood Starve Wars, Glamour, July 2000. The article discuss the theory that eating disorders, specifically anorexia nervosa, are dependent on who the individual surrounds themselves with, citing the shrinking bodies of actresses on Ally McBeal. 44 Council on Size and Weight Discrimination, 1996. www.renfrew.org Advancing the education, prevention, research and treatment of eating disorders. STIGMA A major stigma surrounding eating disorders is the perception of an upper/middle class white woman’s self-imposed problem. Eating disorders are complex, chronic illnesses largely misunderstood and misdiagnosed. The most common eating disorders - anorexia nervosa, bulimia nervosa, and binge eating disorder - are on the rise in the United States and worldwide. No one knows exactly what causes eating disorders. However, all socioeconomic, ethnic and cultural groups are at risk.45 Researchers typically utilize adolescent and young adult females, predominately white and either from an upper or middle class socio-economic background, which leads to problems with sampling, methods of assessment, and defining key terms. Most of the studies and research done on eating disorders are gender biased. Therefore, the figures we have on the numbers of people suffering or surviving are not inclusive and under-represent diverse communities. No one is immune from disordered eating. Children ages 7 to 13 are being referred to eating disorder clinics in great numbers. People of all ethnic and cultural groups are vulnerable to developing eating disorders. Although rates of anorexia are higher among Caucasian girls, recent research indicates that binge eating occurs at similar or even higher rates among girls and women of color. In addition, hundreds of thousands of boys and men are also experiencing disordered eating. Maria Root, a clinical psychologist in Seattle, Washington treats minority patients who tried to hint to a doctor that they had an eating disorder. The doctor would try to be culturally sensitive and tell them that women of their culture usually did not have eating disorders. The patients endure another year with an eating disorder. This is common among ethnic groups, even though researches show the rates of minorities with eating disorders are the same as those of white women. 46 Dr. Ruth Striegel-Moore recently published a study “Recurrent Binge Eating in Black American Women,” finding black women experience binge eating just as much as white women.47 On an international level, more studies are being conducted and published. China and Japan are facing a crisis with laxatives and fad diets.48 Eating disorders are one of the most common psychological problems facing young women in Japan. Unfortunately, women experience great shame in seeking treatment in Japan; so many people are going undiagnosed.49 In Argentina, the eating disorder rates are 3 times the amount in the United States (based on population). Some researchers assert that western culture infiltrated other countries through the media, thus increasing eating disorders. Aside from the ethnocentric quality in this theory, no current research has found a correlation between general identification with dominant white culture and the development of eating disorders. 45 The US Department of Health and Human Services, Office on Women’s Health 46Andrea White, Eating Disorders Among Minorities Are Quite Common, TeenStar, September 1999. 47 Mashadi Mataba, Invisible Women, Silent Suffering: Myth No Longer, an Increasing Number of African-American Women are Developing Eating Disorders. www.nyu.edu/gsas/dept/journal/race_class/eating 48 S. Lee, Anorexia Nervosa in Chinese: A Transcultural Perspective. Presented at the annual meeting of the American Psychiatric Association, 1990. 49 Cultural Roles/ It’s a Small World. www.something-fishy.org www.renfrew.org Advancing the education, prevention, research and treatment of eating disorders. PREVENTION PROGRAMS Prevention programs are limited in number and do not receive the public or private funding needed to address the many issues associated with eating disorders. In 1996, the US Department of Health and Human Services Task Force on Eating Disorders determined the prior curricula designed to promote healthy body image and prevent disordered eating proved ineffective. The increase in eating disorders, the high cost of treatment, the longevity of these illnesses, and the high mortality rate make it imperative that prevention programs be implemented in schools and community programs. In the past, prevention programs failed because the focus was having survivors of eating disorders speak with students on how horrible the eating disorder was, how much weight she had lost, and how she had been hospitalized.50 The students learned negative behaviors and imitated or tried to outdo the behaviors by not eating as much or by purging more than the person described. In essence, the visits glamorized eating disorders and created competition rather than educating and empowering the students to change their behaviors and attitudes. Prevention programs cannot be targeted exclusively toward females. Males need to be educated as to the significant role they play in preventing eating disorders. Males, often without realizing it, objectify females even at an early age by making comments about weight or overemphasizing looks. People of diverse backgrounds suffer from eating disorders, despite the mainstream belief that the disease affects only women. According to the National Eating Disorder Information Center, 1 in 10 men suffer from bulimia, while 1 in 20 suffer from anorexia. A recent article published by a young male explains how similar the feelings and behaviors are of females and males, "I can't explain why or how I started, but every time after I eat I go right to the bathroom and force myself to vomit," says Jason, age sixteen, “I'm overweight, and the first thing people see is your appearance.51” The American Association of University Women found that adolescent girls believe physical appearance is a major part of their self-esteem and that their body image is a major part of their sense of self.52 The age group involved in prevention programs is critical to the prevention of eating disorders because the average age for onset of eating disorders is during adolescence.53 Self-esteem tends to be strong in both girls and boys as children, yet when they hit adolescence there is a significant drop in self-esteem for both girls and boys; a factor in the development of an eating disorder. The federal government, schools and community programs must collaborate to develop creative prevention and outreach programs that are culturally and age appropriate. 50 Costin, Carolyn. The Eating Disorder Source Book. Lowell House, 1999. Additionally, women were the focus of prevention programs. Men were not identified as populations that were at-risk of developing the disease. 51 Bereznai, Steven. Boy Body Blues. www.wiretap.org 52 American Association of University Women Education Foundation. Shortchanging Girls, Shortchanging America. Washington, DC, American Association of University Women Educational Foundation Press, 1991. 53 Shisslak CM, Crago M, McKnight KM, Estes LS, Gray N, and Parnaby OG. Potential risk factors associated with weight control behaviors in elementary and middle school girls. Psychosomatic Research 1998. www.renfrew.org Advancing the education, prevention, research and treatment of eating disorders. LACK OF FUNDING & GOVERNMENT SUPPORT Historically and currently the federal government provides few resources for eating disorders. The National Institute for Health (NIH), the national government organization that provides funds for research and prevention programs, designated no funding in 1999-2000 specifically to eating disorders.54 To show the disparity of funding allocated here is one example: There are 900,000 people living with HIV infection and an estimated 320,282 people in the US living with AIDS. That is a total of 1.2 million people and NIH allocated $1.3 billion dollars to research, prevention, and education of HIV/AIDS projects. And yet there are up to 24 million people suffering from an eating disorder and very few NIH dollars are allocated to eating disorders. Why the disparity? One reason is a critical mass of people are not advocating for issues around eating disorders on a national level. Until recently, there was no central group working on building a coalition of interested parties to educate members of Congress for increased health care benefits, and parity laws. However, the Eating Disorders Coalition for Research, Policy, and Action has brought together many diverse eating disorder groups to have one message on the federal level. Legislation: Past Bills There has been very little legislative activity on eating disorders in the history of Congress. The first bill addressing eating disorders was introduced in 1987 and was a resolution designating a week as the National Eating Disorders Awareness Week. There are 17 bills that have addressed eating disorders however, until the 106th Congress all the bills have simply been a recycling of the following 2 bills:55 • Awareness Week/Day. A popular idea for a legislative initiative to address eating disorders is to establish an eating disorders awareness week or day. This idea was the first eating disorder initiative ever introduced in 1987 and a version of this idea was introduced as a resolution in the 100th, 101st, 102nd and 105th Congress. It was only passed into Public Law once in 1989, which designated October 23 through October 29, 1989 as Eating Disorders Awareness Week. • Information and Education. The second popular idea first introduced by Representative Schroeder in the 103rd Congress (1993) was to require the Secretary carry out a program to provide information and education to the public on the prevention and treatment of eating disorders, including the operation of toll-free 24-hour hotline. A version of this bill was partly included in the 1998 Committee Report of Departments of Labor, Health and Human Services, and Education, and related agencies Appropriation Bill. This prompted the Office of Women's Health in the Secretary's Office to create the Bodywise and Girl Power! projects and including eating disorders in their women's health hotline. Legislation: Current Bills As of July 2003, the following bills include eating diosrders in the bill language. Please visit http://thomas.loc.gov/ to look up the complete bill and the bill’s status.  S 486 & HR 953: Senator Paul Wellstone Mental Health Equitable Treatment Act of 2003  HR 873: Eating Disorders Awareness, Prevention, and Education Act of 2003  S 1172 & HR 716: IMPACT Act, Obesity & Eating Disorder Prevention  S 407: Higher Education Act of 1965  HR Con. Res. 186: National Public Health Initiative on Diabetes and Women's Health  S 18 & HR 2363: Right Start Act of 2003 54 NIH did they allocate 1% of their overall research budget for eating disorders in 1997, however some of this money was supporting research on obesity and diabetes. 55 The information in this section is from the Eating Disorders Coalition website www.eatingdisorderscolaition.org. Of the 17 bills, 12 bills are specifically about eating disorders and the remaining 5 bills are more omnibus women's health or education bills, which include the language of an eating disorders bill. www.renfrew.org Advancing the education, prevention, research and treatment of eating disorders. SUGGESTED CHANGES IN LEGISLATION SPECIFIC TO EATING DISORDERS As more individuals and groups advocate for changes in federal legislation related to eating disorders, it is important for the field to have suggestions for change. The Renfrew Center Foundation believes the information below outlines some possibilities of federal action on behalf of eating disorders. Together, eating disorder advocates, lawmakers and national leaders must create and pass a bill authorizing the Department of Health and Human Services (HHS), and its affiliated agencies (e.g. National Institute of Health, Center for Disease Control, etc.) to work with private and public organizations in efforts to prevent, detect and treat eating disorders. Examples of the components of a comprehensive bill would be:   Establish a national epidemiological study to track the incidence and death rate of eating disorders. $150 million over five years to train nurses and medical doctors on how to assess an eating disorder, address the medical and emotional needs of the patients and how to refer patients to adequate treatment. $25 million over 5 years to research tests to screen for eating disorders and then require federal health care programs and group and individual health plans to cover the tests if demonstrated to be effective. $250 million each year for the next 5 years to support community-based prevention and treatment programs including a requirement that The Agency for Healthcare Research and Quality (AHRQ) conduct research on the quality of the prevention and treatment programs. $75 million each year for the next 5 years to support programs that sustain recovery.    Top Three Priorities for Changes in Legislation in General for Mental Health 1. Pass mental health parity legislation and ensure all mental illnesses are included in parity coverage. 2. Require Insurance companies to adopt the guidelines of the American Psychiatric Association as they relate to medical necessity for eating disorders and all mental illnesses, to eliminate preexisting condition clauses and to allow families to pay for treatment themselves (private pay) if they can afford it and their insurance will not cover all necessary treatment. 3. Provide funds for prevention programs and school-based psychologists, at all schools on a fulltime basis, in efforts to detect and treat as early as possible mental illness. www.renfrew.org Advancing the education, prevention, research and treatment of eating disorders. BRIEFING SHEET56 High prevalence rate. As we enter the new millennium an estimated 8 million people, mainly women and girls, suffer from eating disorders. High death rate. The risk of death for individuals with anorexia is substantial. One study reported an 18-fold increase in the risk of death for individuals with anorexia making this the psychiatric disorder with the highest mortality rate. Treatment can work. Research shows that eating disorders can be successfully overcome with adequate and appropriate treatment. Bulimia nervosa can be successfully treated with cognitive-behavioral, interpersonal and drug therapies. Anorexia nervosa can be successfully treated with structured programs and therapies, which aim to reverse the malnutrition. Such treatments are typically extensive and long-term. For patients with anorexia, only once weight is restored to within 95% of normal can treatment typically make a difference. Health insurance companies contribute to high death rate. Insurance companies routinely limit the number of days they will reimburse which force doctors to discharge patients with anorexia nervosa too early. According to a recent survey of eating disorder specialists, 100% said that their patients are suffering relapses as a consequence of managed care coverage limits. And virtually all specialists believed that patients with anorexia are placed in lifethreatening situations because their health insurance policies mandate early discharge. Inadequate resources for education and research. There is very little federal funding for eating disorder education and research on eating disorders. For example, according to the research office at the NIMH they allocated 1% of their overall research budget for eating disorders in 1997, and some of this money was supporting research on obesity and diabetes. Need for increased funding. Given the high rate of mortality associated with and the widespread public misunderstanding about eating disorders there clearly needs to be more money for education and research. Congress can save lives. With more attention and accurate information policymakers could remove the life and death obstacles to access to care and support increased resources through sound policies. 56 The Eating Disorders Coalition for Research, Policy and Action, Briefing Sheet, 2001. www.renfrew.org Advancing the education, prevention, research and treatment of eating disorders. ADDITIONAL RESOURCES Anna Westin Foundation, Started by a mother who lost her daughter to anorexia, this foundation is an excellent resource for families & friends. www.annawestinfoundation.org Dads and Daughters, Grassroots organization focused on strengthening the relationship between fathers and daughters and raising their self-esteem. www.dadsanddaughters.org Eating Disorders Coalition for Research, Policy and Action, The only coalition of all major eating disorder nonprofits which works on increasing federal resources dedicated to eating disorders. www.eatingdisorderscoalition.org National Eating Disorders Association, An organization that promotes Eating Disorder Awareness Week and other events around prevention and awareness. www.nationaleatingdisorders.org National Institute of Mental Health, Government organization which publishes fact sheets on eating disorders. www.nimh.nih.gov/publicat/eatingdisorder.cfm National Mental Health Awareness Campaign, A nonprofit started by Tipper Gore to remove the stigma associated with mental illness and metal health. www.nostigma.org The Renfrew Center Foundation. The only nonprofit organization that is also connected to treatment facilities allowing an on-going connection between treatment and recovery. The Renfrew Center Foundation works on education (both professional and consumer), prevention, research and access to treatment. The Foundation also sponsors several national trainings, conferences and gatherings for professionals and people in recovery. www.renfrew.org www.renfrew.org Advancing the education, prevention, research and treatment of eating disorders.