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Does the Government Even Realize How Many People Are Living With An Eating Disorder?

05/08/2014 05:37 EDT | Updated 07/08/2014 05:59 EDT

Another mother pleads: "She's 18, she's beautiful, but she doesn't know how beautiful she is. She wears only sweatshirts to hide how skinny ... emaciated ... she is, and her long beautiful hair is now falling out. ...She counts every calorie, even counts the number of rice grains she puts in her mouth. ...I don't know where else to go. ...Everyone blames me, and the doctors don't understand, they just tell her to eat. ...Do they not understand she has an eating disorder, and she is afraid to eat?"

What follows is what I hear from distraught parents who desperately want real help for their children; former athletes who are tired of a twenty-year cycle of binging and purging; and frustrated health practitioners who lack the federal government as a partner.

Some 600,000 to 990,000 Canadians may be suffering with anorexia, binge eating, or bulimia, with eating disorders killing an estimated 1,000-1,500 Canadians annually.

But the federal government does not actually know how many Canadians are suffering. "Not all jurisdictions currently send ED data to CIHI" (Canadian Institute for Health Information). "Current coverage is estimated at 59 % of overall ED visits across eight jurisdictions"; moreover, there are no data on activities in community-based clinics.

These gaps mean that the government cannot provide a comprehensive picture of eating disorders and their impacts. If the government does not know the extent of the problem, it cannot work with the provinces and territories to ensure necessary services for those affected and their families.

Canadians living with anorexia, binge eating, and bulimia, plus families, health practitioners, and other stakeholders are calling for a pan-Canadian strategy to address eating disorders, including early diagnosis and access to the full range of necessary care, a national registry, and a robust research program.

Canadians who hurt and their health practitioners ask that the federal government work with the provinces, territories and stakeholders to develop a centralized data base of treatment programs. They ask also that the government work with its counterparts to address challenges in treating eating disorders, such as an inadequate number and uneven distribution of programs across the country, long wait times, and a lack of pan-Canadian, evidence-based treatment standards.

Former athletes complain that twenty years after their own diagnosis, things are still difficult. "I feel so sorry for kids and their parents. ...Can you imagine watching your child fade away before your eyes, and being told, sorry there is no hospital bed for him or her?"

Canadians living with eating disorders and their families, ask for navigators to help steer through the confusing and overwhelming world in which they are embroiled; and families and health practitioners ask for multidisciplinary care teams, and how to overcome the steep financial costs for treatment.

Health practitioners and researchers ask for a pan-Canadian registry for eating disorders, and to close the gaps in data collection and analysis in order to ensure a comprehensive picture of the incidence and prevalence of these serious mental health disorders in Canada.

Frustrated Canadians living with eating disorders, families and health practitioners also want to have a greater presence at government and the Mental Health Commission discussion tables. Anorexia nervosa has the highest mortality rate of all mental health disorders. Women with anorexia are 12 times more likely to die than women of the same age without the condition.

Families increasingly seek an education campaign for healthcare professionals and other stakeholder-identified groups to promote awareness. Their goal is an understanding of eating disorders and their challenges, recognition of the conditions, and the reduction of associated stereotypes and stigma. After all, parents not only worry about the health of their children, but also about their losing employment and even their homes.

And all stakeholders call for health and wellness education campaign to foster a positive sense of self to protect against eating disorders, and media literacy to counteract unrealistic images of beauty and thinness.

Health practitioners and researchers also ask that the government consider putting in place a national research chair in eating disorders, and to increase funding available for eating-disorders research.

Action takes political will. In February, the Government of Ontario announced the first, long-term, publicly-funded residential treatment program in the Province--offering, at the moment, 12 beds for children and adolescents. This means at least some Ontarians with eating disorders may no longer be forced to go abroad for private health care, and return with little follow-up care. But, what about, for example, the Atlantic and Prairie Provinces?

The federal government must hear the frantic pleas of frightened parents and desperate Canadians who are fighting for the lives of their children and family members, while many they know succumb waiting for help. The status quo is unacceptable.

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