FEWO Committee Report

OBSTACLES IN ADDRESSING EATING DISORDERS

The Committee heard about a number of obstacles that make it difficult for individuals with an eating disorder, their families, health care professionals and others to recognize, receive or provide diagnosis, seek treatment and access other forms of support for the condition. This section discusses some key obstacles, which include low levels of awareness and understanding of eating disorders, a lack of community-based support, existing stereotypes and stigma, bias in the health care field, financial roadblocks, difficulties producing research and tracking information, and specific challenges for marginalized populations. The Committee was also informed of the challenges in accessing treatment for individuals with eating disorders; because of the importance of this problem, it is covered in a separate section.

In order to address the aforementioned roadblocks, some witnesses asked for the development of a national eating disorder strategy, using an approach that includes all levels of education, practice and research, and that provides support to all provinces.[130]

Recommendation 6

The Committee recommends that the Government of Canada consider developing a federal framework supported by an online public resource that would serve to collect from, and provide to, all provinces and territories information, statistics, best practices in recognizing symptoms, diagnosis, and treatment, and to raise awareness about the prevalence of eating disorders in Canada. This would close gaps in data collection and analysis regarding eating disorders and ensure a comprehensive picture of the incidence and prevalence of eating disorders and corresponding services in Canada.

A. Awareness

The Committee heard that greater awareness of eating disorders is needed to counter stigma, misinformation or lack of information, and stereotypes (issues which are examined later). Witnesses were encouraged by progress in recent years in the realm of mental health; there is improved understanding of mental health problems and greater ability to talk about these conditions publicly.[131] However, witnesses raised concerns that eating disorders are not being included under the mental health “umbrella,” and are being excluded from mental health campaigns, programs or agendas.[132] Eating disorders need to be invited to round table discussions and incorporated into the mental health community.[133]

It was recommended to the Committee that Canada establish a national awareness and education campaign on eating disorders to educate the general public,[134] as well as professionals in key fields, such as health care, the media, education and justice.[135] The Committee heard that an awareness and education campaign should include components to increase understanding of eating disorders, their symptoms, treatment options, and available support services. It was also suggested that media literacy could be a valuable part of any national awareness campaign.[136]

Witnesses also suggested that such campaigns should emphasize the fact that an eating disorder is a “severe mental illness that has very high mortality rates,”[137] with the goal of relieving shame and denial, and also decreasing stigmatization and discrimination against individuals with eating disorders.[138]

The Committee learned that awareness empowers prevention strategies, as people are more likely to recognize early onset symptoms of eating disorders and seek assistance; this leads to better population health.[139] As early intervention leads to more successful treatment outcomes for eating disorder patients, witnesses recommended that awareness campaigns educate parents on the initial symptoms of eating disorders and on the first steps that should be taken to address the condition.[140] Joanna Anderson, Executive Director of Sheena’s Place, explained that it is critical to “have parents understand if suddenly their child is skipping meals, the lunch containers are coming back with food still in them, there is a problem and it needs to be addressed.”[141]

Some witnesses spoke of the role that the federal government should play in raising awareness about eating disorders, through methods such as providing the public with reliable information online about eating disorders or highlighting services that assist individuals with eating disorders.[142]

According to witnesses, awareness campaigns should also focus on teaching school staff the appropriate strategies for dealing with eating disorders among their students, and this would include information on preventive measures, possible “triggers,” and symptoms.[143] Wendy Preskow, founder and chief advocate of the National Initiative for Eating Disorders (NIED), suggested that school boards check their curricula to remove “triggers” such as excessive emphasis on healthy eating and obesity concerns.[144] The Committee heard that children are overwhelmed with information about nutrition and health; schools should be aware that children think in concrete terms, and therefore educators should not teach what is “right” and “wrong” to eat or attach guilt to certain food items.[145]

The Committee was told that beyond awareness of eating disorders, the general public should be educated on the ideal healthy body.[146] People should be aware of the “normality of differences between all bodies, and the importance of nourishing our bodies respectfully,” and should promote body confidence in children and youth.[147] Witnesses indicated that greater understanding of healthy bodies should be accompanied by a critical examination of the possible damage done by messages that promote dieting, tracking of BMI and the monitoring of obesity. As Dr. Hasan Hutchinson, Director General of the Office of Nutrition Policy and Promotion at the Health Products and Food Branch of Health Canada, stated:

Nutrition promotion policies, programs, and messages such as those developed by Health Canada, which focus on health and well-being and not on weight and calories, play an important role in the prevention of disordered eating.[148]

Recommendation 7

The Committee recommends that the Government of Canada, in collaboration with the provincial and territorial governments and the Mental Health Commission of Canada, consider including those living with eating disorders, their families, and stakeholders in discussions and round tables regarding mental health.

Recommendation 8

The Committee recommends that the Government of Canada should work with provinces, territories, and stakeholders to ensure that sufficient materials on eating disorders are incorporated into curricula for medical, nursing, psychology, psychiatry, and other health care professions to raise awareness and reduce stereotypes and stigma around eating disorders.

Recommendation 9

The Committee recognizes that there is a need for an advocacy group, like the National Initiative for Eating Disorders, to advocate on behalf of those living with eating disorders and to raise public awareness.

B. Community-Based Support

For many individuals with eating disorders and their families, there are scarce resources and information available in the community.[149] The local resource and support centres that do exist have difficulty keeping up with demand.[150] Joanna Anderson, Executive Director of Sheena’s Place, reported that when successful programs are offered, “groups fill up and have wait lists within hours of registration opening.”[151] The Executive Director of ANEB Quebec, Josée Champagne, spoke of the need to “improve accessibility to specialized support services in the community in order to ensure appropriate and quick assistance for individuals waiting for support.”[152]

Witnesses also spoke of the shortage of community-level assistance geared to parents, siblings and partners of individuals with eating disorders.[153] Laura Beattie, Co-chair of F.E.A.S.T. Canada Task Force, said that parents of children with eating disorders needed specific community help with certain aspects of treatment, such as re-feeding and meal support.[154] Lisa LaBorde, whose daughter had an eating disorder, said that families need community resources and support as children are developing symptoms at younger ages.[155]

Among community mental health agencies, the Committee heard that there is generally not enough time and funding to provide training in eating disorders.[156] Merryl Bear, Director of NEDIC, explained that when her organization refers people seeking help to local mental health programs, often the staff at these mental health centres do not have specialized knowledge in eating disorders.[157] Dr. Leora Pinhas, psychiatrist at the Hospital for Sick Children, said “we need intensive community programs and people who are trained to work with families where they live and provide them the supports they’re entitled to in the way they do for any other mental health disorder.”[158]

A central challenge in developing and providing assistance at the community level is the lack of sustained funding for community-based resource and support centres. As witnesses explained, many of these centres currently receive little or no public funding and depend on fundraising efforts to keep their doors open.[159] As a result, the Committee heard that these organizations spend their time and energy “looking for funding”[160] and many of them “live month to month.”[161] Many witnesses specifically recommended the provision of sustained funding for community-based resources and programs.[162]Noelle Martin, professor at Brescia University College and President of Registered Dietitian Services, suggested “federal funding… [be] offered to places that are maybe even outside of clinical settings, such as Hope’s Garden or Sheena’s Place, and other places like that across Canada.”[163]

If community-based resource and support centres received stable funding, the Committee was told these centres could expand preventive programs, provide support services to underserved and isolated populations, assist clients who are navigating the health care system, and build resource databases to inform clients.[164]

Dr. Carla Rice, Canada Research Chair in Care, Gender and Relationships, recommended the “development of an alternate system of community-based treatment and support” for individuals with eating disorders. [165] Wendy Preskow, founder and chief advocate of NIED, spoke of the need for community support, asking for specific community group homes, which she describes as “places of safety the same as provided for substance abuse, alcoholism, and drug abuse; there is absolutely nothing like this for eating disorder sufferers.”[166] Ms. Preskow also suggested funding and training community crisis teams, which would be “teams of professionals – medical, mental, nutritional – who parents or sufferers can call on at any time during a crisis 24/7/365 for meaningful help and support.”[167] It was also recommended that community-based support be offered in schools. Psychiatrist Dr. Wendy Spettigue, of CACAP, said there was a great need for “trained community health counsellors who can counsel students who suffer from depression, anxiety, self-injurious behaviour, eating disorders, and addictions.”[168]

Recommendation 10

The Committee recommends that the Government of Canada recognize as a best practice the availability of navigators for eating disorders for the health and mental health care system to help identify quality services available in a timely manner, and help individuals and families navigate the system.

C. Stereotypes and Stigma

Witnesses agreed that one of the most significant roadblocks to successful diagnosis of, treatment of, and recovery from eating disorders are the stereotypes and stigma attached to them. As with many mental illnesses, the reality for individuals with eating disorders, and their families, is not well understood and the disease tends to be viewed as taboo or a pseudo-illness.^[169] Elaine Stevenson, co-administrator of the Alyssa Stevenson Eating Disorder Memorial Trust, remarked that “eating disorders are cloaked in the three S's: shame, secrecy, and silence.”^[170]

Witnesses described the common, erroneous stereotypes about eating disorders that are held by the general public and health care professionals, including:

• only young, Caucasian, middle- to upper-class, heterosexual girls have eating disorders;[171]
• parents, mothers in particular, are to blame for their child’s eating disorder;[172] and
• an eating disorder is merely a phase, is self-inflicted, and is an attempt to get attention.[173]

These stereotypes are so engrained, so persistent and so powerful that some witnesses referred to them as mythologies.[174] The consequence of these stereotypes is that they feed into stigma, which fuels shame among individuals with eating disorders, making it more difficult for them to acknowledge they have the disorder, to seek diagnosis and to accept and maintain treatment. As well, this stigma can lead to discrimination by the public and health care professionals, which will be discussed in the next section on bias in the health care field.[175]

The Committee heard that an individual with an eating disorder may sometimes be told “she’s just looking for attention,” “it’s her mother’s fault,” or “she’s a spoiled rich girl.”[176] These characterizations reinforce the stigma; those with an eating disorder are afraid of admitting to the disease and of being judged. Witnesses noted that it is even difficult for these individuals to confide to their closest family and friends. As a result, many individuals have difficulty seeking diagnosis and accepting treatment; instead, they suffer in silence.[177]

Furthermore, the Committee was told that for individuals who do not fit the stereotype of a patient with an eating disorder, they may not recognize their illness or feel that their disorder is serious or legitimate.[178] As well, parents, friends and health care professionals may not believe an individual has an eating disorder if he or she does not match the stereotype; this situation can arise among young children, among boys and men, or among ethnic and visible minorities.[179]

As discussed in the previous section on awareness, the Committee was told that Canada should establish a national awareness and education campaign on eating disorders to educate the general public, in part with the goal to fight stigma, stereotypes and discrimination against those with eating disorders.[180]

D. Bias in the Health Care Field

Some witnesses indicated that patients with eating disorders, and the patients’ families, feel discriminated against by health care professionals and the health care system in general. The Committee was told that a central example of such discrimination is the limited access to treatment and lengthy wait times for admission to eating disorder programs across the country.[181] Dr. Blake Woodside, Medical Director for the Program for Eating Disorders at the Toronto General Hospital, compared the treatment wait times for patients with anorexia nervosa versus prostate cancer:

If there were waits like this of four to six months for prostate cancer treatment, there would be a national outcry. There would be marches in the streets. The marches would be attended by middle-age men like me, but of course prostate cancer is a disease of middle-age men just like me, and older, so there is a clinic for prostate cancer in every hospital in this country. Compare that with the situation for anorexia nervosa where, in the province of Ontario… there are only three treatment centres that have in-patient beds for a population of 12 million. If this isn't discrimination, I don't know what is.[182]

Dr. Leora Pinhas, psychiatrist at the Hospital for Sick Children, spoke of her frustration because these disorders are not considered as a priority within health communities, and her persistent advocacy and work is dismissed by colleagues.[183] In addition, witnesses expressed frustration that eating disorders are marginalized within the mental health care system, and are rarely included in mental health programs, campaigns or research agendas.[184] For example, Dr. Pinhas explained that in Toronto, all acute adolescent mental health beds do not accept patients who have a primary diagnosis of an eating disorder, even if they have a concurrent disorder such as depression.[185]

Witnesses spoke of being treated with disrespect and blamed by health care professionals when they sought assistance for themselves, or for someone else who had an eating disorder.[186] Joanna Anderson, Executive Director of Sheena’s Place, described an experience where she sought assistance for a client:

She was having chest pain, and I was very nervous for her, and I accompanied her to emergency. I did that because I knew that she was going to be treated terribly in the emergency department. When I mentioned to the [Emergency Room] doctor that… she had been struggling with an eating disorder for many years, he said to tell her the waiting list was six months long, and then proceeded to not really treat her with the same kind of respect or care that you would get if you were just having chest pain and someone didn't know that you had an eating disorder. So I think our clients are discriminated against on the understanding that this is something that people do to themselves, that it's a bad choice that they make, whereas what we're trying to educate… the public about is that this is a mental illness that is very based in genetic and biological functions.[187]

In other circumstances, the Committee heard of general practitioners or doctors in hospital emergency departments who had little knowledge of the disorder, provided misguided advice such as “gain some pounds,” or who focused on body appearance and weight.[188] Carly Lambert-Crawford, a therapist and survivor of an eating disorder, told the Committee:

I don't want anyone [with an eating disorder] … to be told that there are a lot of other people there who are sicker than them and to just eat and stop taking up a bed, or to be told that they are too sick to talk to anyone and to not be given a voice to even try to understand.[189]

The suggestion of bias in the psychiatric field was also made to the Committee. Ms. Anderson said that “because this is a long-standing, entrenched illness, a lot of psychiatrists don't want to take eating disorder clients on. They view them as high-risk – their mortality rates are very high – and they view it as a very long commitment.”[190]

The Committee was told that patients may not receive appropriate diagnosis and treatment because of doctors who rely on stereotypes and misinformation. Witnesses suggested that some doctors may dismiss eating disorder symptoms because the patient does not fit the expected body size, race or ethnicity, or gender.[191] For example, some doctors have an established idea of the “ideal body” and hold the common perception that “thin” is healthy and extra weight is not.[192] In particular, witnesses indicated that many health care professionals are misguided in diagnosing eating disorders based solely on weight or BMI; rather, health care professionals should examine an individual’s relationships with food and his or her body.[193] Josée Champagne, Executive Director of ANEB Quebec, spoke of doctors who had not diagnosed an individual as being anorexic, because the patient was “not thin enough.”[194] Some health care professionals allow racial stereotypes of patients with eating disorders to limit their diagnosis, as will be expanded upon in the upcoming section on marginalized populations. Dr. Carla Rice, Canada Research Chair in Care, Gender and Relationships, explained:

[I]n researching body image and eating concerns among diverse groups of Canadian women, I spoke with a number of racialized women—Asian women, South Asian, as well as African Caribbean Canadian women—whose eating disorders were misdiagnosed or dismissed by health care providers, an experience that complicated their recovery and that they attributed to race. In other words, they attributed it to health providers' not being able to imagine, because of this dominant mythology, someone of their racial group struggling with an eating disorder.[195]

Dr. Monique Jericho, psychiatrist and Medical Director of the Calgary Eating Disorder Program, cautioned against using the word “discrimination” as it implies deliberate neglect or harm; instead, she said it is an issue of lack of recognition, misunderstanding, stereotypes and stigma.[196]

The Committee was told that it was imperative that health care professionals – family physicians, nurses, emergency room doctors, and others – be educated about eating disorders.[197] It was recommended by a number of witnesses that eating disorders be incorporated in the curriculum in medical schools, family practice residency programs and psychiatry residency programs.[198] Dr. Jericho suggested that:

[Health care professionals] need to be taught how to diagnose these conditions and generally how to manage them until people can access comprehensive specialized treatment centres … they need to be prepared to deliver a diagnosis that the patient may not like or may deny.… They need also some preparation in how to talk to parents and partners about the condition….[199]

As director of the program, Dr. Gail McVey spoke of the Ontario Community Outreach Program for Eating Disorders, established in 1993, which receives its funding support from the Ontario Ministry of Health and Long-Term Care. She described this provincial training program:

[The program] identified champions who, with our support, showed an interest in specializing in the treatment of eating disorders and educating health care practitioners and educators to help out with identification and early intervention, where possible…. [As part of this program,] we [also] developed a first-of-its-kind provincial network of specialized eating disorder service providers.[200]

The program provides training on evidence-based care to these health care practitioners and educators, and incorporates the newest information about current practices in treatment and prevention.[201] Dr. McVey indicated that the program was very successful and recommended that it be “replicated in other provinces across Canada.”[202] Other witnesses also spoke highly of OCOPED, and suggested implementing the same model elsewhere.[203]

Recommendation 11

The Committee recommends that the Government of Canada should work with the provinces, territories, and stakeholders to improve understanding of eating disorders in the health care field. One current model is the Ontario Community Outreach Program for Eating Disorders which delivers education and other supports to health care professionals and encourages and empowers health care professionals to treat people with eating disorders.

Recommendation 12

The Committee recommends that the Government of Canada should work with the provinces, territories, and stakeholders to recognize that there exists in Canadian society, and within the medical community, a lack of understanding and a stigmatization of eating disorders.

E. Financial Roadblocks

There was broad consensus among witnesses that living with an eating disorder results in a significant financial burden for the individual, a partner, and family members.[204] The Committee was told that private therapy ranges from $80 to $250 an hour, depending on the city and province, and individuals with an eating disorder can require multiple sessions each week.[205] Individuals need a multidisciplinary team to assist in their recovery, which can include, but is not limited to, general practitioners, psychiatrists, psychologists, dietitians, and therapists. Witnesses suggested that the costs of this team are prohibitively expensive if an individual is required to pay for it with no assistance.[206] While Sheena’s Place provides free services and support, the centre’s Executive Director Joanna Anderson explained the financial pressure:

Of the minority of [Sheena’s Place] clients who are currently receiving other [eating disorder] services, 82% are paying for private sector individual therapy.… A young woman in Ontario has recently turned to crowd-funding $60,000 to pay for life-saving treatment for her eating disorder.[207]

In addition, witnesses said that many mental health services, including those specific to eating disorders, are not funded by provincial health insurance plans and private insurance plans frequently provide insufficient funds for meaningful service.[208] The Committee heard recommendations outside the scope of the federal government jurisdiction that private and provincial health care coverage be expanded to include greater and timely coverage for individuals with eating disorders when treatment is not available in Canada.[209]

The Committee was told that because of the debilitating nature of eating disorders, many individuals with eating disorders will at some point in their lives rely on disability or employment insurance for income.[210] One resource centre noted that only 44% of its clients are able to financially support themselves.[211] For other individuals, seeking treatment is not an option as they cannot afford the financial cost of leaving their jobs.[212]

In addition, witnesses informed the Committee that the shortage of publicly funded care and the long waiting lists leads many individuals to turn to expensive private treatment options, which they cannot afford.[213] Patricia Lemoine, speaking of her personal experience with an eating disorder, stated “not only was [the eating disorder] ruining my life, but this was also ruining my finances.”[214]

Witnesses spoke of the great financial burden placed on families who are caring for someone, often children – young or grown up – with an eating disorder. Many parents will sacrifice their financial stability to pay for private treatment for their children; they will take out lines of credit, mortgage their houses, and sometimes end up bankrupt.[215] In some cases, parents take leave without pay to regularly attend medical appointments or care for their children at home.[216] Parents of adult children who rely on provincial disability benefits must often cover additional living expenses.[217] Witnesses recommended providing greater financial support to parents of children with eating disorders.[218] Two witnesses, in a written response, explained “a minimum standard of care would recognize that individuals should not be financially compromised in any way by accessing care that contributes significantly to their health.”[219]

F. Concurrent Disorders

The Committee learned that the majority of individuals who have eating disorders also have a concurrent disorder, such as anxiety, depression, trauma-related disorders, obsessive compulsive disorder or a substance-abuse issue.[220] Witnesses indicated that approximately 80% of individuals with eating disorders have one or more concurrent conditions.[221]

A number of witnesses explained that having an eating disorder and a concurrent disorder creates additional challenges in terms of being diagnosed, being treated, and receiving other forms of support. The Committee was told that individuals with eating disorders who have concurrent disorders are passed between service providers who do not treat both conditions. They explained that most eating disorder treatment programs do not address concurrent conditions, despite the connection between the two health issues, and that many mental health programs refuse to accept, or are not equipped for, patients who also have an eating disorder.[222] Merryl Bear, Director of NEDIC, explained:

The biggest challenge is that very few treatment facilities will actually work with both of the concurrent issues… It’s a revolving door where individuals who are ready for help actually find it exceptionally difficult to get in a door where they are going to be accepted as they are, as whole human beings with multiple difficulties.[223]

Carly Lambert-Crawford, a therapist speaking from past experience and from the experience of her clients, elaborated:

[Y]ou have to meet the specific criteria of whatever the program is. I was told that I was too sick for certain programs. Some of my clients who maybe are struggling with any sort of substance abuse or alcoholism, they are no longer eligible for these programs. A lot of programs don't treat binge eating disorder. There is a lot of criteria that you have to meet to be able to access the treatment that we have right now. That is really challenging.[224]

Many individuals with eating disorders are not capable of navigating this complex system of health care services divided into silos.[225] Wendy Preskow, founder and chief advocate of NIED, explained the difficulty that her 28-year-old daughter, who has an eating disorder, experienced:

There is no system in place to help our child… She is so paralyzed with anxiety and depression, and still expected to navigate the so-called system for help because of her age.[226]

Witnesses said that without coping strategies for concurrent problems, individuals do not feel in control and cannot focus on developing normal eating patterns.[227] Ms. Preskow said she sought help for her daughter’s anxiety, but that:

[B]ecause [my daughter] has an eating disorder she cannot be part of the Anxiety Clinic… [she] needs to go to an eating disorder treatment program first. But it’s all wrapped up together. The anxiety fuels the eating disorder which fuels the anxiety. We believe if she could get strategies to control her anxiety, the eating disorder would be more controlled.[228]

Some witnesses recommended that treatment programs consist of teams who can deal with the eating disorder, as well as the concurrent disorder.[229] It was also suggested that there be greater cooperation between the health care professionals dealing with eating disorders, mental health problems and addictions.[230]

Recommendation 13

The Committee recommends that the Government of Canada should work with the provinces, territories, and stakeholders to encourage multidisciplinary care teams, which might include dieticians, psychiatrists, psychologists, and other necessary therapists, to ensure quality treatment, including for concurrent conditions.

G. Producing Research and Tracking Information

The Committee heard that there is a very active and dedicated group of Canadian researchers working on the subject of eating disorders, but that those researchers encounter serious challenges in developing and sharing research.[231] Members were informed that it is difficult to build specialized research in the field of eating disorders.[232]

Witnesses underlined the need for a nationally funded research strategy or agenda on eating disorders.[233] Dr. Blake Woodside of Toronto General Hospital suggested that the federal government examine the priorities and policies of the CIHI and of the Institute of Neurosciences, Mental Health and Addiction at the CIHR, with the goal of developing a national plan for research into novel treatments for eating disorders.[234]

Many witnesses highlighted the lack of dedicated funding available for research on the subject of eating disorders; they recommended increasing such funding.^[235] Other witnesses suggested that there is an uneven distribution of research funding in the health care field, with health conditions that are less or equally prevalent as eating disorders receiving much greater research funding.[236] Dr. Woodside stated, “It is simply impossible in this country to do meaningful research on illnesses like anorexia or bulimia, given the amount of research money that’s available.”[237]

According to some researchers, they face challenges in their work because of a lack of time, funds and resources, which limits their ability to share and collaborate with colleagues; this collaboration would serve to move the field forward.[238] Dr. Monique Jericho, psychiatrist and Medical Director of the Calgary Eating Disorder Program, explained that these researchers end up “doing great things in pockets,” rather than working in partnership.[239] The Committee was told that collaboration with hospitals, general practitioners, psychiatrists, psychologists and counsellors would also benefit research in the field of eating disorders.[240] A number of witnesses recommended the development of a centre of excellence or a national clearinghouse to promote collaboration.[241]

Researchers informed the Committee that another roadblock in their research programs is the limited data on several aspects of eating disorders in Canada.[242] The Committee heard that this situation can be attributed, in part, to the lack of an established system to track such information; witnesses indicated a possible solution would be to develop a national registry, which could serve as a centralized database to track statistics related to eating disorders.[243] Elizabeth Phoenix, a nurse practitioner with CFMHN, suggested tracking:

[T]he incidence and prevalence of eating disorders, the wait times for assessments and treatment, and the outcomes from the branches of services provided. It should also track dropouts from treatment and the state of wellness achieved by those who receive treatment.[244]

Witnesses also recommended that there be a method established (for example in coroners’ reports) to properly record eating disorders as a “cause of death”; often cause of death is listed as another condition, such as heart failure or suicide, while the eating disorder is listed under the contributing cause of death (or sometimes not listed at all). However, properly recording “eating disorders” as a cause of death would help to understand the severity of the disease.[245]

The Committee was told that there are huge gaps in the field of eating disorder research in Canada, and as a result, practitioners are provided little information on evidence-based prevention, diagnosis and treatment.[246] As one witness said in response to a Committee member’s question: “That’s a very difficult [question], because I don’t have enough research to answer. … I might have some opinions, but I don’t have facts.”[247] Witnesses suggested establishing a National Research Chair on the subject of eating disorders who could be a champion in the field of research.[248] According to psychiatrist Dr. Wendy Spettigue, of CACAP, this Chair could oversee a national registry and track the gaps in research in this field.[249] Laura Beattie, Co-chair of F.E.A.S.T. Canada Task Force, suggested that Canada join other countries in participating in global research studies on eating disorders, such as the ANGI-Anorexia Nervosa Initiative, which is “a global effort to detect genetic variation that contributes to [anorexia].”[250]

Recommendation 14

The Committee recommends that the Government of Canada should consider putting in place a centre of excellence or a national research chair in eating disorders, and increasing funding available for eating disorders research.

Recommendation 15

The Committee recommends that the Government of Canada should work with the provinces, territories and stakeholders to ensure that all jurisdictions send eating disorder data to the Canadian Institute for Health Information. Data coverage is estimated at 59% of overall visits across eight jurisdictions.

Recommendation 16

The Committee recommends that the Government of Canada should work with the provinces, territories and stakeholders to ensure that data on activities in primary care and community-based clinics is collected and sent to the Canadian Institute for Health Information.

H. Marginalized Populations

The Committee heard that access to information, diagnosis and treatment is very difficult for the majority of Canadians with eating disorders; and it is particularly challenging for certain marginalized populations. As an example, for individuals with eating disorders who live in remote and rural communities throughout Canada, support services and treatment centres are largely non-existent.[251] It was noted that simply moving individuals to treatment centres in urban areas is not an ideal solution, as this removes the individual from support networks and from familiar environments, thus reinforcing isolation.[252]

Dr. Blake Woodside of Toronto General Hospital recommended establishing “micro-agencies” with two or three employees who would receive training on eating disorder treatment, such as cognitive behavioural therapy, and who would be available in remote or rural communities.[253]

Among ethnic and visible minority communities, a central challenge to the treatment of eating disorders is countering the stereotypical idea that these disorders affect only Caucasian populations. Individuals in these communities may not recognize that they could have an eating disorder; they may feel their condition is less legitimate; or they may not know how to access the health care services.[254] As well, doctors may dismiss eating disorder symptoms because the individual does not fit the stereotypical image of a patient with an eating disorder.[255] Dr. Carla Rice, Canada Research Chair in Care, Gender and Relationships, explained that there tends to be “a singular representation of who is the woman who develops an eating disorder. In Canada’s multiracial and multicultural society I think that image no longer fits the reality of who is actually developing eating problems in this country.”[256]

In addition, while there is significant stigma attached to seeking help for eating disorders, this stigma can be reinforced in some families with cultural norms about family privacy and honour.[257] A final challenge for these communities is that there is little targeted research or culturally specific treatment for individuals of specific ethnic and visible minorities.[258]

Lisa LaBorde, parent of a child with an eating disorder, recommended direct collaboration with minority communities in order to address specific concerns related to mental health, and eating disorders in particular.[259] It was also suggested that awareness campaigns target these communities.[260]

Individuals who identify as a sexual or gender minority may also face unique struggles; their sexual identity may create different challenges than the rest of the population in recognizing, diagnosing and treating an eating disorder.[261]

The Committee heard that many marginalized populations face the same challenge:

While individuals from non-minority groups (e.g., White young women) may be “expected” to suffer from eating disorders, those from minority groups (including racial/ethnic minority women, men, and queer women) may be considered by family, friends, and medical professionals to be immune.[262]

Recommendation 17

The Committee recommends that the Government of Canada should work with the provinces, territories and stakeholders to ensure access to information, diagnosis, and treatment for Canadians living with eating disorders, and particularly for remote and rural communities, and marginalized populations.