Individuals and their families are bearing a disproportionate amount of the responsibility for the $64.7 billion annual cost of eating disorders in the U.S., according to the first comprehensive study in the country, with little funding directed toward prevention and treatment despite the disorders’ prevalence.

The fact that eating disorders are “perceived as just something that affects 'vain girls'” has undermined both prevention efforts and research into these conditions, said S. Bryn Austin, a co-author of the study and a member of the research faculty at Boston Children's Hospital. About 4.6% of the U.S. population has an eating disorder, but the suite of conditions receive much less funding proportionally from the National Institutes of Health than other mental health issues, including schizophrenia, Alzheimer’s disease and autism. 

Austin hopes this new cost analysis, published March 3 in the International Journal of Eating Disorders — which takes into account not only health system costs but also individual and caregiver productivity losses, and efficiency losses — could spur reform in the country, where more than 10,000 people died from an eating disorder during the yearlong study period. Individuals paid for nearly $19 billion, or 29%, of the costs, often paying out-of-pocket for what is, in many cases, life-saving treatment. 

“Families and loved ones and individuals pick up so much of the tab because they're not getting adequate coverage,” Austin told The Academic Times. Insurance providers are not required to cover many of the services that Austin said are considered essential to treating patients with these conditions. 

“Medicare is an example of where someone can get medical and nutrition services for diabetes, because clearly that's what's needed, but they can't get both medical and nutrition services for an eating disorder,” she said “And it's just an arbitrary exclusion.”

Austin and her colleagues also found that the economic burden of these conditions does not just affect diagnosed individuals, who may miss work or be less productive because of illness and, in the worst cases, may die. According to the researchers, caregivers provided, on average, six weeks of unpaid care each year to a loved one with an eating disorder. That finding, Austin and her co-authors wrote, underscores the need for more robust paid family leave policies at the federal and state levels.

For their study, the researchers did a “thorough” literature review and used nationally representative U.S. studies of eating disorders. They compiled data on prevalence of the disorders and mortality rates as well as costs, including health care costs and costs of lost productivity for people with anorexia nervosa, bulimia nervosa, binge eating disorder and otherwise specified feeding or eating disorders. 

“We know that eating disorders are preventable and they're treatable,” Austin said, adding that the people most likely to be overlooked by their doctors and miss out on preventive care are people of color, men and heavier people — people who fall outside the stereotype of the thin white female patient. “If we can address the problems with early identification and access to care, that's a place where we ultimately would be able to reduce the costs; getting people into care early will reduce, ultimately, the cost of having an eating disorder.”

When Austin became president of the board of directors of the Academy for Eating Disorders in 2019, she became aware of two studies in Australia and the United Kingdom addressing the societal costs of eating disorders. After the report was published in Australia, advocates used the results to make the case for policy reform.

“In 2018, in Australia, they made a major advance with the federal government to get their national health insurance to do much better coverage of eating disorders,” Austin said. “The estimate was that 30,000 additional people each year in Australia with eating disorders will be able to access care.” 

Austin asked researchers at Deloitte Access Economics, the group that worked on the Australian study, to collaborate on a similar analysis, and said she’s hopeful that this study could spur policy changes in the U.S. 

Americans, she said, should not “have to pay out of pocket or forego care." But currently, “That's the choice people often are left with.”

The study “Social and economic cost of eating disorders in the United States: Evidence to inform policy action,” published March 3 in the International Journal of Eating Disorders, was authored by Jared Streatfeild, Josiah Hickson and Lynne Pezzullo, Deloitte Access Economics; S. Bryn Austin, Boston Children’s Hospital, Harvard Medical School, Harvard University and Strategic Training Initiative for the Prevention of Eating Disorders; Rebecca Hutcheson, Strategic Training Initiative for the Prevention of Eating Disorders and the University of Washington; Johanna S. Kandel, Alliance for Eating Disorders Awareness; Jillian G. Lampert, The Emily Program and REDC Consortium; Elissa M. Myers, Academy for Eating Disorders; Tracy K. Richmond and Mihail Samnaliev, Boston Children’s Hospital, Harvard Medical School and Strategic Training Initiative for the Prevention of Eating Disorders; Katrina Velasquez, Center Road Solutions; and Ruth S. Weissman, Wesleyan University.