Eating Disorders Are Not As Rare As They Seem
How Rare Are Eating Disorders?
In the U.S.A. eating disorders affect more than 30 million people - this is twice the number of those with Alzheimer's and five times the number of those with schizophrenia (1).
Other statistics put the percentage of affected individuals in the total population as 9% for eating disorders (2), 1.7% for Alzheimer's, and 0.25-0.64% (average 0.45%) for schizophrenia (4)
According to data from the National Institute of Mental Health (2017), the average research dollars spent on individuals affected by Alzheimer's in the U.S.A. averaged $247 USD per affected individual.
For schizophrenia, the average was $67 USD per affected individual.
Compare that to eating disorders which averaged $1.07 USD per affected individual (1).
How does this compare to Canada?
The rate of eating disorders in Canada (2016) is 2-3% of the total population. This translated to roughly 1 million individuals in 2016 (5). A more recent study (6) estimates that number to be 1.7 million
The rate of dementia (2020) in Canada is 1.55%, which includes more than just Alzheimer's. This translates to roughly 597,000 individuals (6).
The rate of schizphrenia in Canada (in 2019) was 1%. This translates to roughly 376,000 individuals (7).
Keep in mind that many individuals with eating disorders may never receive a formal diagnosis or fit neatly in one diagnostic category. Marginalized populations are frequently overlooked.
The rate of eating disorders (and disordered eating in particular), is likely to be exponentially higher.
All of these conditions deserve adequate funding and resources, but we need to shift away from the idea that eating disorders are all that rare. They are disproportionately underfunded when it comes to research and services.
The Cost of Eating Disorders
Eating disorders (and disordered eating), whether formally diagnosed or not, impact individuals and their families in innumerable ways.
However, these costs are frequently under-estimated or overlooked.
Physical health can certainly be impacted by ALL types of eating disorders, disordered eating, and co-morbid mental health diagnoses; however, physical health is only one aspect of overall health; mental, social, spiritual, and other aspects of health are important to consider.
If you ask individuals struggling with these conditions what the biggest losses they face are, many will tell you about the loss of relationships, quality of life, time, ability, dignity, opportunity, education, stability, careers, self-respect, custody, independence, income, and so on.
Even if you did not care about the personal costs of eating disorders and disordered eating, the economic impact of these conditions and our current management of them is not remotely cost-effective.
As is the case for eating disorder research, services and supports for persons struggling with these conditions across the lifespan are severely underfunded.
This results in preventable morbidity, mortality, and spending in the form of costly healthcare interventions as well as disability or income assistance payments, etc.
Eating disorders have the highest mortality rate of any psychiatric illness (outside of deaths due to the toxic drug supply.) Although data is limited, it is estimated that at least 25% of these deaths are due to suicide (2).
It is important to keep in mind that many of the statistics on eating disorders focus on diagnosed Anorexia Nervosa (AN) and Bulimia Nervosa (BN) - AN is the least common eating disorder diagnosis and eating disorder diagnoses are frequently missed in marginalized populations.
Eating disorders are frequently accompanied by co-morbid mental illness and histories of trauma - whether a loss of life is captured as relating to an eating disorder diagnosis or co-morbid diagnosis (including substance use) is something to consider.
Beyond mortality, the morbidity associated with eating disorders is significant.
References
Lester (2021). Famished: Eating Disorders & Failed Care in America
MacLeish (2012) cited in Famished
ANAD Eating Disorder Statistics - https://anad.org/eating-disorders-statistics/
Alzheimer's Association Facts & Figures - https://www.alz.org/alzheimers-dementia/facts-figures#:~:text=More%20than%206%20million%20Americans%20of%20all%20ages%20have%20Alzheimer's,are%20age%2075%20or%20older.
NIMH Schizophrenia - https://www.nimh.nih.gov/health/statistics/schizophrenia
Stone KD, Dimitropoulos G, MacMaster FP. Food for Thought: A Dissonance Between Healthcare Utilization Costs and Research Funding for Eating Disorders in Canada. J Can Acad Child Adolesc Psychiatry. 2021 Aug;30(3):197-203. Epub 2021 Aug 1. PMID: 34381512; PMCID: PMC8315219.
Arcelus J, Mitchell AJ, Wales J, Nielsen S. Mortality rates in patients with anorexia nervosa and other eating disorders: A meta-analysis of 36 studies. Archives of General Psychiatry. 2011;68(7):724–731. doi: 10.1001/archgenpsychiatry.2011.74.
Hughes EK, Sawyer SM, Accurso EC, Singh S, Le Grange D. Predictors of early response in conjoint and separated models of family-based treatment for adolescent anorexia nervosa. European Eating Disorders Review. 2019;27(3):283–294. doi: 10.1002/erv.2668.
4. van Hoeken D, Hoek HW. Review of the burden of eating disorders: mortality, disability, costs, quality of life, and family burden. Curr Opin Psychiatry. 2020 Nov;33(6):521-527. doi: 10.1097/YCO.0000000000000641. PMID: 32796186; PMCID: PMC7575017.
CIHI Patient Cost Estimator
Su JC, Birmingham CL. Anorexia nervosa: The cost of long-term disability. Eating and Weight Disorders. 2003;8(1):76–79. doi: 10.1007/BF03324993.