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FEWO Committee Report

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Many witnesses suggested that eating disorder data collection is insufficient, that the data are out of date, and that too little is known about the incidence and prevalence of eating disorders in certain populations, including children and youth, ethnic and visible minorities, First Nations people, and sexual and gender minorities.[10] Better data, witnesses suggested, would help raise awareness and provide proof of the severity and pervasiveness of eating disorders. The Canadian Institute for Health Information (CIHI) indicated that “while CIHI’s current data holdings provide some information on eating disorders for women and girls in Canada, there is the opportunity to do more.”[11] The Committee was told that eight jurisdictions report eating disorder data to CIHI, and that estimated emergency department coverage is at 59% for all of Canada.[12]

A. General Data

Witnesses nonetheless provided the Committee with the most relevant or up-to-date data available. The Public Health Agency of Canada (PHAC) told the Committee that in 2006, 0.5% of Canadians aged 15 years and over had been diagnosed with an eating disorder in the previous 12 months, and that 1.5% of Canadians reported symptoms that met criteria for an “eating attitude problem.”[13] Dr. Blake Woodside, Medical Director for the Program for Eating Disorders at the Toronto General Hospital, reported that anorexia nervosa occurs in about 0.5% of the population, meaning that about 150,000 Canadians have or have had this illness.[14] About 15% to 20% of individuals with anorexia nervosa develop a chronic form of the illness, which is often unresponsive to treatment.[15] Dr. Woodside reported that bulimia nervosa occurs in nearly 1% of the population, which is about 300,000 Canadians.

The data that Dr. Gail McVey, of the Hospital for Sick Children in Toronto and Director at the Ontario Community Outreach Program for Eating Disorders (OCOPED), provided to the Committee suggest that as many as 600,000 to 990,000 Canadians meet the diagnostic criteria for an eating disorder at any given time, with an even larger number of individuals reporting symptoms that are seriously debilitating, but insufficient for diagnosis.[16] Other witnesses noted that among adolescents, onset peaks between the ages 19 and 20 for anorexia nervosa, between the ages 16 and 20 for bulimia nervosa, and between the ages 18 and 20 for binge eating disorder.[17]

Dr. Carla Rice, Canada Research Chair in Care, Gender and Relationships and M.Sc. candidate Andrea LaMarre, both of the Department of Family Relations and Applied Nutrition at the University of Guelph, suggested that the recent change in the Diagnostic and Statistical Manual’s (DSM-5) classification of eating disorders will likely lead to changes in eating disorder diagnosis, which could affect prevalence and incidence calculations.[18] They also warned that statistics often represent only the cases of individuals who sought medical intervention, meaning that actual incidence of some disorders may be higher; in the case of Canadian children with eating disorders, the actual incidence was estimated to be two to four times higher than what is reported in the literature.[19] Further, certain populations may be less likely to seek treatment, particularly if they do not meet the stereotypical eating disorder patient profile. Men and boys, members of ethnic and visible minority groups, and members of sexual and gender minority groups might be less likely to seek treatment out of shame or fear of stigma, and health professionals may not recognize eating disorders as readily in these populations as they would for young white women.[20]

B. Eating Disorders among Boys and Men

Eating disorders are far more common among women and girls than men and boys. Dr. Blake Woodside of Toronto General Hospital testified that about 80% of individuals living with eating disorders are women.[21] Dr. Joy Johnson, Scientific Director of the Institute of Gender and Health at the Canadian Institutes of Health Research (CIHR), told the Committee that boys are increasingly being diagnosed with eating disorders.[22] As Dr. Woodside noted, however, the manifestation of eating disorders in boys and men may be different than in girls and women. For instance, he reported that while some men may pursue weight loss, others may also seek to increase their weight through weight lifting.[23] Dr. April Elliott, Chief of Adolescent Medicine with the Alberta Children’s Hospital, suggested that young men face additional challenges as they must often seek treatment through programs designed for young women.[24] Finally, Laura Beattie, Co-chair of Families Empowered and Supporting Treatment of Eating Disorders (F.E.A.S.T.) Canada Task Force, urged the Committee not to forget that young men develop eating disorders too, because in her view, failing to acknowledge this population only perpetuates “the stigma and myths attached to this illness.”[25] Witnesses focused mainly on women due to the mandate and purview of the Committee, but did ensure that the Committee knew about the manner in which men and boys suffered from eating disorders.

C. Mortality Rates

Some of the most disturbing statistics about eating disorders are their mortality rates. Many witnesses noted that eating disorders, particularly anorexia nervosa, have the highest mortality rate of any mental illness.[26] The high mortality rates are a result of life-threatening medical complications and the frequency of suicide among people with eating disorders.[27] Researchers have estimated that 10% of individuals diagnosed with anorexia nervosa will die within 10 years of diagnosis.[28] The overall mortality rate for anorexia nervosa is estimated at between 10% and 15%, while mortality for bulimia nervosa is estimated at about 5%.[29] Together, these two disorders kill an estimated 1,000 to 1,500 Canadians per year.[30] Some witnesses noted, however, that death certificates often do not record eating disorders as the cause of death, but instead record the medical complication that killed the patient or, if applicable, suicide, as the cause of death, thus hiding the true lethality of eating disorders.[31]

D. Importance of High-Quality Data on Eating Disorders

In addition to hearing about problems with Canadian data on eating disorders, the Committee heard why high-quality data are so important for people working in the field of eating disorders. Elizabeth Phoenix, a nurse practitioner with the Canadian Federation of Mental Health Nurses (CFMHN), argued that strong data are necessary to inform practice decisions.[32] Jarrah Hodge of Women, Action and the Media Vancouver explained that not-for-profit and community organizations working with or on behalf of people with eating disorders struggle to secure funding for their programs without having accurate data to demonstrate the need for their services.[33]

Carly Lambert-Crawford, a therapist and survivor of an eating disorder, told the Committee, “I can tell you right now that the statistics on eating disorders are downplaying this issue a thousand times over and millions are suffering in silence.”[34]

[10]       Evidence, 5 February 2014, 1625 (Merryl Bear, Director, National Eating Disorder Information Centre); Evidence, 10 December 2013, 1620 (Marla Israel, Acting Director General, Centre for Health Promotion and Chronic Disease Prevention Branch, Public Health Agency of Canada); Evidence, 24 February 2014, 1700 (Elizabeth Phoenix, Nurse Practitioner, Canadian Federation of Mental Health Nurses); Evidence, 12 February 2014, 1610 (Joanna Anderson); Hasan Hutchinson, Ph.D., Director General, Office of Nutrition Policy and Promotion, Health Products and Food Branch, Health Canada “Follow up to Standing Committee on the Status of Women”, Written Response, 21 March 2014; Evidence, 10 December 2013, 1635 (Dr. Joy Johnson, Ph.D., RN, FCAHC, Scientific Director, Institute of Gender and Health, Canadian Institutes of Health Research); Evidence, 10 February 2014, 1610 (Dr. Leora Pinhas, M.D., FRCPC, Department of Psychiatry, The Hospital for Sick Children of Toronto).

[11]       Brent Diverty, Vice-President, Programs, Canadian Institute for Health Information, “Brief to the Standing Committee on the Status of Women”, Submitted Brief, 2 April 2014.

[12]       Brent Diverty, “Brief to the Standing Committee on the Status of Women”, Submitted Brief, 2 April 2014.

[13]       Evidence, 10 December 2013, 1540 (Marla Israel).

[14]       Evidence, 28 November 2013, 1530 (Dr. Blake Woodside).

[15]       Ibid.

[16]       Dr. Gail McVey, Ph.D., C.Psych., Community Health Systems Resource Group, Ontario Community Outreach Program for Eating Disorders, The Hospital for Sick Children of Toronto, “Existing gaps in eating disorder services and recommendations”, Ontario Community Outreach Program for Eating Disorders, Submitted Brief, 4 March 2014.

[17]       Dr. Carla Rice and Andrea LaMarre, University of Guelph, “Follow Up Testimony on Eating Disorder Treatment and Prevention in Canada”, Written Response, 10 March 2014.

[18]       Ibid.

[19]       Ibid.

[20]       Ibid.

[21]       Ibid.

[22]       Evidence, 10 December 2013, 1545 (Dr. Joy Johnson).

[23]       Evidence, 28 November 2013, 1545 (Dr. Blake Woodside).

[24]       Evidence, 5 February 2014, 1635 (Dr. April S. Elliott, M.D., Paediatrician, Chief of Adolescent Medicine, Alberta Children’s Hospital, Calgary Eating Disorder Program).

[25]       Evidence, 3 March 2014, 1550 (Laura Beattie, Co-chair, Families Empowered and Supporting Treatment of Eating Disorders Canada Task Force).

[26]       Evidence, 5 February 2014, 1635 (Dr. April S. Elliott); Evidence, 5 February 2014, 1650 (Dr. Debra Katzman, M.D., FRCPC, Professor of Paediatrics, Division of Adolescent Medicine, Department of Paediatrics, University of Toronto); Evidence, 5 February 2014, 1535 (Merryl Bear); Evidence, 10 February 2014, 1640 (Wendy Preskow, Founder and Chief Advocate, National Initiative for Eating Disorders); Evidence, 10 December 2013, 1545 (Dr. Joy Johnson); Evidence, 24 February 2014, 1530 (Dr. Wendy Spettigue); Evidence, 12 February 2014, 1535 (Noelle Martin, RD, Professor, Brescia University College, Western University, and President, Registered Dietitian Services); Evidence, 3 March 2014, 1535 (Patricia Lemoine).

[27]       Evidence, 5 February 2014, 1635 (Dr. April S. Elliott); Evidence, 24 February 2014, 1530 (Dr. Wendy Spettigue).

[28]       Evidence, 12 February 2014, 1535 (Noelle Martin).

[29]       Evidence, 28 November 2013, 1530 (Dr. Blake Woodside).

[30]       Ibid.

[31]       Evidence, 28 November 2013, 1530 (Dr. Blake Woodside); Evidence, 5 February 2014, 1625 (Merryl Bear); Evidence, 3 March 2014, 1550 (Elaine Stevenson, co-administrator, Alyssa Stevenson Eating Disorder Memorial Trust).

[32]       Evidence, 24 February 2014, 1555 (Elizabeth Phoenix).

[33]       Evidence, 10 February 2014, 1700 (Jarrah Hodge, Women, Action and the Media Vancouver).

[34]       Evidence, 5 March 2014, 1530 (Carly Lambert-Crawford, as an individual).