Eating Disorders Coalit

Champions Circle National Eating Disorders Association Residential Eating Disorders Consortium Executive Circle Clementine Eating Recovery Center The Emily Program The Emily Program Foundation Kantor & Kantor, LLP Monte Nido Oliver-Pyatt Centers Veritas Collaborative Policy Circle Academy for Eating Disorders The Renfrew Center Leadership Circle Alliance for Eating Disorders Awareness Gail R. Schoenbach FREED Foundation Reasons Eating Disorder Center Remuda Ranch Advocacy Circle Binge Eating Disorder Association Center for Change International Association of Eating Disorders Professionals Foundation (iaedp) Laureate Eating Disorders Program Timberline Knolls Support Circle Cambridge Eating Disorder Center Castlewood Treatment Center Center for Discovery Eating Disorder Center of Denver Eating Disorder Hope International Eating Disorder Action (IEDAction) Mirasol Eating Disorder Recovery Centers Mothers Against Eating Disorders (MAED) Multi-Service Eating Disorders Association Park Nicollet Melrose Center Rosewood Centers for Eating Disorders Walden Behavioral Care Hope Circle Aloria Health BingeBehavior.com Casa Palmera Eating Disorder Coalition of Iowa (EDCI) The Eating Disorder Foundation Eating Disorder Therapy LA The Eating Disorders Center at Rogers Memorial Hospital FEAST FINDINGbalance Gurze Books International Federation of Eating Disorders Dietitians (IFEDD) Manna Scholarship Fund McCallum Place Eating Disorder Centers Moonshadow’s Spirit The National Association of Anorexia Nervosa and Associated Eating Disorders Strategic Training Initiative for the Prevention of Eating Disorders (STRIPED) Theravive Wrobel & Smith, PLLP WVU Disordered Eating Center of Charleston

DATE:

August 4, 2017

TO:

Office on Women’s Health, U.S. Department of Health and Human Services

FROM:

Eating Disorders Coalition

RE:

Office on Women's Health Website & Factsheet Suggestions

Overview: Thank you for the opportunity to provide feedback on the Office on Women’s Health (OWH) website as it relates to the mental illness of eating disorders. Eating Disorders affect over 30 million Americans during their lifetime, and have the highest mortality rate of any psychiatric illness. Eating disorders do not discriminate, affecting people of all ages, races, sizes, sexual orientations, ethnicities and socioeconomic statutes; however, research does show there is a high prevalence rate amongst women and our military servicemembers. Per the DSM 5, eating disorders are complex, biologically-based illnesses that include the specific disorders of anorexia nervosa (AN), bulimia nervosa (BN), binge eating disorder (BED), avoidant/restrictive food intake disorder (ARFID), and other specified feeding or eating disorders. As the White House Parity Task Force noted in in an October 31, 2016 report, there is still a cultural belief that eating disorders are not a true medical issue, often leading to automatic insurance denial. This stigma also pervades into the public and to our health professionals, leading to a lack of early identification, formal training about eating disorders, and the identification and treatment for such disorders for our health professionals who sit on the frontlines of identifying this illness. Only one-third of persons with eating disorders receive any medical, psychiatric, or therapeutic care. With this, we thank the Office on Women’s Health for taking steps to update their website to help battle the stigma against eating disorders, which helps both our health professionals and the public to early identify and find the resources they need to treat eating disorders. Below are suggestions from the Eating Disorders Coalition team of experts including experts from Harvard University’s STRIPED, National Eating Disorders Association, Alliance for Eating Disorders Awareness, Oliver Pyatt Treatment Center, Residential Eating Disorders Consortium, Binge Eating Disorders Association, the Academy for Eating Disorders, The Emily Program, and the Eating Recovery Center. We welcome the opportunity in the future to meet with the OWH to include all experts in the field to better discuss how we can increase early identification for the public and trainings for our health professionals. A. Main A-Z Health Topics Page: We recommend updating the initial search categorization for these topics, so that all categories of eating disorders are grouped under "Eating Disorders" in the A-Z listing of health issues. There can be a page of general information on eating disorders, with links to additional information on the big three eating disorders (AN, BN, and BED). The reason to combine these disorders instead of have them separately listed out is that often people will not know which type of eating disorder they may have and eating disorders will transition from one category to another during the lifespan. B. Create a General Eating Disorders Page and Overall Recommendations: 1. Stigma-Reduction Techniques: Overall, we recommend the OWH webpages work to battle existing stereotypes about people affected by eating disorders—that it only

Champions Circle National Eating Disorders Association Residential Eating Disorders Consortium Executive Circle Clementine Eating Recovery Center The Emily Program The Emily Program Foundation Kantor & Kantor, LLP Monte Nido Oliver-Pyatt Centers Veritas Collaborative Policy Circle Academy for Eating Disorders The Renfrew Center Leadership Circle Alliance for Eating Disorders Awareness Gail R. Schoenbach FREED Foundation Reasons Eating Disorder Center Remuda Ranch Advocacy Circle Binge Eating Disorder Association Center for Change International Association of Eating Disorders Professionals Foundation Laureate Eating Disorders Program Timberline Knolls Support Circle Cambridge Eating Disorder Center Castlewood Treatment Center Center for Discovery Eating Disorder Center of Denver Eating Disorder Hope International Eating Disorder Action (IEDAction) Mirasol Eating Disorder Recovery Centers Mothers Against Eating Disorders (MAED) Multi-Service Eating Disorders Association Park Nicollet Melrose Center Rosewood Centers for Eating Disorders Walden Behavioral Care Hope Circle Aloria Health BingeBehavior.com Casa Palmera Eating Disorder Coalition of Iowa The Eating Disorder Foundation Eating Disorder Therapy LA The Eating Disorders Center at Rogers Memorial Hospital Eating Disorder Network of Maryland FEAST FINDINGbalance Gurze Books International Federation of Eating Disorders Dietitians (IFEDD) Manna Scholarship Fund McCallum Place Eating Disorder Centers Moonshadow’s Spirit The National Association of Anorexia Nervosa and Associated Eating Disorder Strategic Training Initiative for the Prevention of Eating Disorders (STRIPED) Theravive Wrobel & Smith, PLLP WVU Disordered Eating Center of Charleston

affects Caucasian women. We have a growing understanding as a field that eating disorders are serious, deadly illnesses that can and do affect people of all ethnicities, colors, nationalities, incomes, gender identities, sexuality, ages, or sizes. Misunderstandings and myths about who suffers from eating disorders exist among healthcare professionals as well as the public, and these misunderstandings are rooted in outdated beliefs about the nature of eating disorders, as well as reflective of existing stigma about mental illnesses. Eating disorders are syndromes resulting from a complex interplay of genetic predisposition, biologic vulnerabilities, and other epigenetic factors. Among such risk factors, a history of macro- and micro-aggressions, discrimination and marginalization, and the well-documented confluence of stressors associated with minority status put people from marginalized communities at particularly high risk for the development of eating disorders.1 Marginalized Communities: • Eating disorders in communities of color2: Research demonstrates that there do not appear to be any significant differences in rates of Anorexia Nervosa across all ethnic groups in the United States. Rates of Bulimia Nervosa appear to be significantly higher in Latino and AfricanAmerican groups than compared to Caucasians. Rates of Binge-Eating Disorder are significantly higher in all ethnic groups in the United States. • Eating Disorders in the LGBTQ community3: Overall rates of eating disorders and disordered eating behaviors appear to be significantly higher in the LGBTQ community as compared to heterosexual women and men. The transgender population appears to have an alarmingly elevated risk of eating disorders as compared to other groups. Treatment Utilization4: Despite rates of eating disorders being the same or higher in these groups, there remains a tremendous disparity in who receives services and who remains under-identified by professionals, thereby not receiving much needed treatment and care. The already low rates of treatment utilization among people with eating disorders are even lower for people in marginalized communities. People in ethnic minority groups with a lifetime history of any eating disorders were significantly less likely to have received and utilized mental health services than non-Latino Whites. Finally, there are significant economic barriers for many people in marginalized communities that result in lack of or difficulty in accessing much needed care. Recommendations: • With this, we recommend replacing the current picture of a Caucasian woman on the scale shown on the anorexia nervosa, bulimia nervosa, and binge eating disorder page with a more neutral image. • Additionally, we hope OWH would be able to strike a balance between speaking with the demographic of women that fall under OWH’s purview while also speaking against gender-specific stereotypes, given that eating disorders affect both men and women. 1

Austin, S. B., Nelson, L. A., Birkett, M. A., Calzo, J. P., & Everett, B. (2013). Eating Disorder Symptoms and Obesity at the Intersections of Gender, Ethnicity and Sexual Orientation in U.S. High School Students. American Journal of Public Health, 103(2), e16–e22. 2 Feldman, M. B., & Meyer, I. H. (2007). Eating Disorders in Diverse Lesbian, Gay, and Bisexual Populations. The International Journal of Eating Disorders,40(3), 218–226. 3 Diemer, E. W., Grant, J. D., Munn-Chernoff, M. A., Patterson, D. A., & Duncan, A. E. (2015). Gender identity, sexual orientation, and eating-related pathology in a national sample of college students. Journal of Adolescent Health, 57(2), 144-149. 4 Marques, L., Alegria, M., Becker, A. E., Chen, C., Fang, A., Chosak, A., & Diniz, J. B. (2011). Comparative Prevalence, Correlates of Impairment, and Service Utilization for Eating Disorders across U.S. Ethnic Groups: Implications for Reducing Ethnic Disparities in Health Care Access for Eating Disorders. The International Journal of Eating Disorders, 44(5), 412–420. PO Box 96503-98807  Washington DC 20090  202-543-9570 www.eatingdisorderscoalition.org

For example, in our opinion, the Depression Page hits the appropriate balance by discussing how depression affects both men and women. Also, we commend statements on the Depression Page that depression is not a “normal part of being a woman”, and such language would work well related to dieting under the eating disorders category. For example, “dieting is not a normal part of being a woman.” Champions Circle National Eating Disorders Association Residential Eating Disorders Consortium Executive Circle Clementine Eating Recovery Center The Emily Program The Emily Program Foundation Kantor & Kantor, LLP Monte Nido Oliver-Pyatt Centers Veritas Collaborative Policy Circle Academy for Eating Disorders The Renfrew Center Leadership Circle Alliance for Eating Disorders Awareness Gail R. Schoenbach FREED Foundation Reasons Eating Disorder Center Remuda Ranch Advocacy Circle Binge Eating Disorder Association Center for Change International Association of Eating Disorders Professionals Foundation Laureate Eating Disorders Program Timberline Knolls Support Circle Cambridge Eating Disorder Center Castlewood Treatment Center Center for Discovery Eating Disorder Center of Denver Eating Disorder Hope International Eating Disorder Action (IEDAction) Mirasol Eating Disorder Recovery Centers Mothers Against Eating Disorders (MAED) Multi-Service Eating Disorders Association Park Nicollet Melrose Center Rosewood Centers for Eating Disorders Walden Behavioral Care Hope Circle Aloria Health BingeBehavior.com Casa Palmera Eating Disorder Coalition of Iowa The Eating Disorder Foundation Eating Disorder Therapy LA The Eating Disorders Center at Rogers Memorial Hospital Eating Disorder Network of Maryland FEAST FINDINGbalance Gurze Books International Federation of Eating Disorders Dietitians (IFEDD) Manna Scholarship Fund McCallum Place Eating Disorder Centers Moonshadow’s Spirit The National Association of Anorexia Nervosa and Associated Eating Disorder Strategic Training Initiative for the Prevention of Eating Disorders (STRIPED) Theravive Wrobel & Smith, PLLP WVU Disordered Eating Center of Charleston

2. Provide an overview of eating disorders: In creating an eating disorders-specific page, we recommend providing a main overview page of what eating disorders are, including the subsects of the illness. The Alliance for Eating Disorders Awareness offers a good general overview of the illness which can be found here: http://www.allianceforeatingdisorders.com/portal/what-areeating-disorders. Another great resource is Dr. Tim Murphy and Rep. Butterfield’s recently introduced Resolution to create a nationally recognized eating disorders awareness week (H. Res. 428) that utilized the eating disorders experts in the community identify the evidence-based overview of the illness to heighten awareness. 3. Include the different levels of treatment for eating disorders: Additionally, on this page, we suggest including descriptions of the different levels for eating disorders treatment including Inpatient Treatment, Residential Treatment, Day Treatment (Partial Hospitalization), Intensive Outpatient, and Outpatient Treatment. A great example can be found at the Alliance for Eating Disorders website here: http://www.allianceforeatingdisorders.com/portal/care-levels. 4. Include other eating disorders outside of the “Big Three”: In addition to providing information on the “big three” eating disorders (AN, BN, BED), we also recommend including information on eating disorders that don’t fall neatly into those three categories from the DSM, including OSFED, ARFID, Rumination Disorder, etc. The National Eating Disorders Association provides a good reference on these disorders: https://www.nationaleatingdisorders.org/learn/by-eating-disorder. 5. Women’s Helpline: Womenshealth.gov offers a helpline at (800) 994-9662. The helpline is a federal resource for women’s health information, including the National Breast Feeding Helpline. They can help refer you only to online publications or health organizations. If you need specific advice, they advise you to call your doctor. Calling the helpline, however, isn’t specific to helping people with eating disorders. We recommend providing the national eating disorders helpline from the National Eating Disorders Association at (800) 931-2237, to both people on the helpline and on the website, which will provide them with more in-depth assistance. NEDA is happy to help train OWH Helpline staff on eating disorder information. 6. Include a Screening Tool: To increase early identification of eating disorders for the public, we recommend including a screening tool on the general page or all the pages for the various eating disorders. Currently, the three major screening tools are the Eating Attitudes Test (EAT), the SCOFF questionnaire, and the Eating Disorder Screen for Primary care (ESP). They can be administered quickly and have shown validity in nonclinical populations.5,6 Each of these screenings have advantages, however there are some concerns that they miss signifiers from non-female-identified students and those experiencing binge-eating disorder. The most well-used screening tool is the SCOFF questionnaire, which is posted on the National Institute of Mental Health’s website. The SCOFF is a five-question screening tool to evaluate the core features of anorexia nervosa and bulimia nervosa. The questions are in a yes/no format, with each affirmative answer receiving one point. 5

Morgan, J. F., Reid, F., & Lacey, J. H. (1999). The SCOFF questionnaire: assessment of a new screening tool for eating disorders. BMJ (Clinical Research ed.), 319(7223), 1467-1468. 6 Cotton, M. A., Ball, C., & Robinson, P. H. (2003). Four simple questions can help screen for eating disorders. Journal of General Internal Medicine, 18(1), 53-56. PO Box 96503-98807  Washington DC 20090  202-543-9570 www.eatingdisorderscoalition.org


The questions as listed in Kagan & Melrose7 are: o Do you make yourself Sick because you feel uncomfortably full? o Do you worry that you have lost Control over how much you eat? o Have you recently lost more than One stone (14 lbs.) in a 3-month period? o Do you believe yourself to be Fat when others say you are too thin? o Would you say that Food dominates your life? A score greater than or equal to two indicates a possible case of anorexia nervosa or bulimia nervosa. The SCOFF has been tested with clinical and college student populations and was able to identify 100% of clinical eating disorders with a false positive rate of 12.5%.8 In a later study in primary care and university settings, the SCOFF was shown to have a sensitivity rate of 78% and a specificity of 88%.9 The National Eating Disorders Association also provides a quick, online screening tool from the Stanford-Washington University Eating Disorder Screen (SWED) for the public, ages 13+ which can be provided on the website. The link to the tool can be found here: https://www.nationaleatingdisorders.org/screening-tool. This tool was developed by Drs. C. Barr Taylor, Katherine Balantekin, Ellen Fitzsimmons-Craft, Andrea Kass, Mickey Trockel, and Denise Wilfley under grant funding through the National Institute of Mental Health (NIMH) (R01MH081125 and R01 MH100455). C.

Recommendation for Anorexia Nervosa Site and Factsheets:

In the current sections under anorexia nervosa, we recommend the following: 1. “What is anorexia” subsection: Under the “What is anorexia” subsection would be to use definitions closer to the DSM criteria, with a tad more simplified the language. For example: • Severely limiting food intake, leading to a significantly low body weight for the person's age, sex, developmental trajectory, and physical health. Some people may also overexercise or throw-up food to avoid weight gain. • Intense fear or gaining weight or becoming fat, or using behaviors to prevent weight gain, even though at a low weight. • Denial of low body weight, thinking they are fat even when they are thin. The person bases their value or self-esteem on weight or body shape. 2. “Who is at risk for anorexia” subsection: We recommend including “and happens to all races and ethnicities” as it states under the bulimia nervosa and binge eating disorder pages. 3. “How is anorexia treated” subsection: Under “how is anorexia treated?”, based on clinical practices and evidence-based studies, we recommend including nutritional counseling with the use of a registered dietitian. This treatment information is included for bulimia nervosa and binge eating. 4. “Factsheet”: In the Anorexia Factsheet, there is a subsection on the second page with the subheading, “What causes anorexia?” a sentence states, “Researchers think that eating disorders might happen because of a combination of a person’s biology and life events.” We suggest to 7

Kagan, S. & Melrose, C. (2003). The SCOFF questionnaire was less sensitive but more specific than the ESP for detecting eating disorders. Evidence-Based Nursing, 6(4), 118. 8 Morgan, J. F., Reid, F., & Lacey, J. H. (1999). The SCOFF questionnaire: assessment of a new screening tool for eating disorders. BMJ (Clinical Research ed.), 319(7223), 1467-1468. 9 Cotton, M. A., Ball, C., & Robinson, P. H. (2003). Four simple questions can help screen for eating disorders. Journal of General Internal Medicine, 18(1), 53-56. PO Box 96503-98807  Washington DC 20090  202-543-9570 www.eatingdisorderscoalition.org

add the words “and larger societal influences” at the end of the sentence so that it reads: “Researchers think that eating disorders might happen because of a combination of a person’s biology, life events, and larger societal influences.”


5. “Resource”: Under the “Resource” subsection of the Factsheet, we recommend rearranging the organizations to have the National Eating Disorders Association listed first, as they offer the largest helpline in the United States.

D. Recommendation for Bulimia Nervosa Site and Factsheets: Under the current section for bulimia nervosa, we recommend the following: 1. “What is Bulimia” subsection: Under this sub-section, we recommend using definitions closer to the DSM criteria, with a tad more simplified the language. For example: • Repeated binge eating, or eating very large amounts of food within a short time. The person feels they can't stop eating or can't control what they eat. • Using unhealthy behaviors to prevent weight gain after eating, such as self-induced vomiting, abusing laxatives or diuretics, over-exercising, or fasting. • The binge eating and weight control behaviors happen together at least once a week for 3 months. • The person bases their value or self-esteem on weight or body shape. 2. “Factsheet”: In the Bulimia Factsheet, there is a subsection on the second page with the subheading, “What causes bulimia?” a sentence states, “Researchers think that eating disorders might happen because of a combination of a person’s biology and life events.” We suggest to add the words “and larger societal influences” at the end of the sentence so that it reads: “Researchers think that eating disorders might happen because of a combination of a person’s biology, life events, and larger societal influences.” 3. “Resource”: Under the “Resource” subsection of the Factsheet, we recommend rearranging the organizations to have the National Eating Disorders Association listed first, as they offer the largest helpline in the United States. E. Recommendation for Binge Eating Disorder Site and Factsheets: In the current sections under binge eating disorder, we recommend the following: 1. “What is binge eating” subsection: Another suggestion under the “What is binge eating” subsection would be to use definitions closer to the DSM criteria, with a tad more simplified the language. For example: • Repeated binge eating, or eating very large amounts of food within a short time. Or, when eating any amount of food, the person feels they cannot stop eating or can't control what they eat. • The binge eating happens at least once a week for three months. • The binge eating is not accompanied by unhealthy weight control behaviors such as selfinduced vomiting, abusing laxatives or diuretics, over-exercising, or fasting. • The person also feels at least three of these during/after binging: a. eating much more rapidly than normal b. eating until feeling uncomfortably full c. eating large amounts of food when not feeling physically hungry d. eating alone because of feeling embarrassed by how much one is eating e. feeling disgusted with oneself, depressed, or very guilty afterwards PO Box 96503-98807  Washington DC 20090  202-543-9570 www.eatingdisorderscoalition.org


2. “What are the symptoms of binge eating disorder” subsection: We suggest renaming the section on “What are the symptoms of binge eating disorder” to “What are the warning signs of binge eating disorder” as a more public-friendly way to early identify if they may be affected. Furthermore, we recommend building out the list of symptoms to include the other warning signs including, “Sense of lack of control over eating”, “Weight gain/fluctuations”, “Selfmedicating with food”, “Hiding food”, “High levels of anxiety and/or depression”, and “Low self-esteem”. Also, we recommend in the bullet on “eating large amounts of food when not hunger, to add in “without purging behaviors”. 3. “How is Binge Eating Disorder Diagnosed” subsection: We recommend the following statement: “If you suspect you might be suffering from binge eating disorder, it is appropriate to seek out support and evaluation by a health or mental health practitioner specifically trained to diagnose eating disorders.” 4. “How is Binge Eating Treated” subsection: We recommend adding in support groups under the “How is binge eating treated?” section. We also recommend given the often misdiagnosis of binge eating disorder of obesity, to specifically recommend the support groups for eating disorders and not weight-loss/diet groups. It is also important to note that BEDA and binge eating experts do not recommend appetite suppressants for binge eating disorders. Antidepressants and the only FDA-approved binge eating medication lisdexamfetamine can be recommended in certain cases.10 5. “How does binge eating disorder affect a woman’s health” subsection: Under both the Factsheet and the website subsection, we recommend the following: For stigma-reduction purposes and evidence-based research, we recommend avoiding language that may sound as if binge eating is caused by obesity.11 Instead, it would be appropriate to list obesity as possibly co-occurring with binge eating. 6. “Factsheet”: In the Binge Eating Factsheet, there is a subsection on the second page with the subheading, “What causes binge eating?” in which a sentence states, “Researchers think that eating disorders might happen because of a combination of a person’s biology and life events.” We suggest adding the words “and larger societal influences” at the end of the sentence so that it reads: “Researchers think that eating disorders might happen because of a combination of a person’s biology, life events, and larger societal influences.” 7. Under the “Resource” subsection of the Factsheet, we recommend rearranging the organizations to have the National Eating Disorders Association listed first, as they offer the largest helpline in the United States. We also recommend adding Binge Eating Disorders Association which provides specific support and resources for people affected by binge eating disorder. Also, we would remove The Obesity Society as a resource for binge eating as it perpetuates the weight-stigma view that often leads many to not reach out for treatment.

10

Reas, D. L. & Grilo, C. M. (2015). Pharmacological treatment of binge eating disorder: update review and synthesis. Expert Opinion on Pharmacotherapy, 16(10), 14631478.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4491373/ 11 Thornton, L. M., Watson, H. J., Jangmo, A., Welch, E., Wiklund, C., von Hausswolff-Juhlin, Y., . . . Bulik, C. M. (2017). Binge-eating disorder in the Swedish national registers: somatic comorbidity. International Journal of Eating Disorders, 50(1), 58-65. PO Box 96503-98807  Washington DC 20090  202-543-9570 www.eatingdisorderscoalition.org