A call for the CDC to track eating disorders

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November 29, 2017—A coalition led by Harvard’s Strategic Training Initiative for the Prevention of Eating Disorders (STRIPED) is asking the Centers for Disease Control (CDC) to monitor eating disorders as a part of national disease surveillance efforts. Bryn Austin, professor in the Department of Social and Behavioral Sciences and director of STRIPED, explains why this is critical for the treatment and prevention of eating disorders.

What are eating disorders and how many Americans are affected by them?

I think there are misperceptions about who is affected. When people think of eating disorders, they’re often imagining what they see in the popular press. So, the images of a Hollywood starlet who’s extremely emaciated, that’s the kind of image that gets put out there about eating disorders. But the reality is that eating disorders affect millions of people from all walks of life. They affect men and women, people of all gender identities, all race and ethnicity groups, all income groups, and people across the country.

Eating disorders include anorexia nervosa, which is the one people most often think of, but also include bulimia nervosa and binge eating disorder, which is by far the most common, affecting somewhere close to 4% of the U.S. population. We know that around 30 million Americans will be affected by eating disorders in their lifetime and probably double or triple that are affected by what we might call sub-clinical eating disorders, which doesn’t mean they’re not potentially just as harmful, but they just may not reach all the criteria to get a psychiatric diagnosis.

What we’re concerned about from a health perspective is that eating disorders can affect all systems of the body. One of the longer-term effects includes bone loss–when the hormonal system is disrupted, which can happen either from extreme weight loss or from the weight cycling or purging that can be part of an eating disorder, bone does not grow in a healthy way. During the teen years that can mean a lifelong risk of osteoporosis and potentially fractures down the road. There’s also risk of fertility loss, gastrointestinal issues, and dental problems because of the effects of purging on enamel and tooth erosion. And there is a particularly high mortality rate among teenagers. For example, a 15-year-old with an eating disorder, particularly anorexia nervosa, has 10 times the risk of dying in her teen years compared to another teen who doesn’t have an eating disorder.

Why isn’t the CDC tracking eating disorders? What is your coalition asking the agency to do?

The CDC had been tracking eating disorder symptoms on the Youth Risk Behavior Surveillance System Survey, which is conducted every two years in high schools in many states across the country. And they had been doing that for more than a decade. Then in 2015, they dropped that surveillance.

The CDC already has a dozen or more standard tracking system surveys out in the field, so we are asking them to include questions about eating disorders in these surveys. It could be very easy to include a few more questions, for example, to identify the symptoms of unhealthy weight control that might be signs of eating disorder symptoms or to identify abuse of weight control products or steroids, which are often connected to body image concerns in boys and men.

The next step will be to sit down with the CDC and staff at the National Center for Health Statistics to talk about how measures of eating disorders can be added into surveys and how the questions should be worded.

The CDC’s failure to track eating disorders really gets back to stereotypes about eating disorders and the widespread misconception that they are not a public health issue. In fact, most public health schools do not offer any education about eating disorders, which perpetuates the ignorance in the field. For all of the great work that the CDC does, it t does not seem to be aware of what it’s missing by failing to monitor eating disorders in the U.S. population. We’re hoping with advocacy and education – and a little help from members of Congress—we can fix this.

How would tracking eating disorders contribute to treatment and prevention?

We need to detect people’s symptoms early so we can get them into care. Currently, only a third of people in the U.S. with an eating disorder ever receive treatment. And many clinicians don’t receive training in early detection, so they aren’t equipped to refer people to treatment. Eating disorders are treatable. We’ve got good treatments in place for most people, if we can get them access to health care and overcome the barriers of stigma and affordability.

The CDC’s national data collection is also important because it allows us to monitor what’s happening in communities across the country. It allows us to see if prevention efforts might be successful in one area of the country versus another. It also allows us to see if new epidemics of disorders are emerging or if certain population groups are more affected. For example, from the research we have today, there is reason to think that there is increasing risk among boys. We have good reason to think that there are higher rates of eating disorder symptoms among boys of color compared to whites. We’re starting to see data that veterans have much higher rates of eating disorder symptoms than had ever been recognized before. But we need data from the CDC to be able to identify when we’re doing something right and when we need to mount a public health response.

—Noah Leavitt

This interview has been edited and condensed and for clarity.

Below, listen to a podcast interview with Bryn Austin: