The importance of tracking eating disorders

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Coming up on Harvard Chan: This Week in Health…

A call for the CDC to tracking eating disorders in America.

{***Bryn Austin Soundbite***}

(Basically it’s radio silence from the CDC on anything to do with a disorder that affects 30 million Americans at minimum and actually has among the highest mortality rate of any psychiatric disorder.)

In this week’s episode we examine how better data on eating disorders could improve treatment and prevention.



Hello and welcome to Harvard Chan: This Week in Health. It’s Thursday, November 30, 2017. I’m Noah Leavitt. Amie Montemurro is off this week.

It’s estimated that more than 30 million Americans will experience an eating disorder in their lifetime.

But despite that, these psychiatric conditions are not monitored by the Centers for Disease Control—or CDC.

The CDC uses various surveillance systems, such as surveys, to monitor health across the country.

These systems can help detect outbreaks of infectious diseases like Zika, track rising rates of illnesses like opioid addiction, and help find connections between behavioral habits and diseases—such as smoking and lung cancer.

This data is also critical to help determine which public health programs are succeeding—and to identify where more resources and services are needed.

In 2015, the CDC removed eating disorders from its national tracking systems.

But now there’s a push to have this monitoring reinstated.

The Strategic Training Initiative for the Prevention of Eating Disorders, or STRIPED,—based here at the Harvard Chan School—is leading a coalition of organizations and lawmakers who are asking the CDC to resume tracking of eating disorders.

In October, 65 members of Congress sent a letter to the CDC, urging the organization to implement a national surveillance system for eating disorders.

To learn more about the effort—and why tracking eating disorders is so important—I sat down with Bryn Austin, who is the director of STRIPED, and professor in the Department of Social and Behavioral Sciences here at the Harvard Chan School.

I began our conversation by asking her to explain what eating disorders are—and why are they are such a critical public health issue.

BRYN AUSTIN: When people think of eating disorders, they’re often imagining what we 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. That couldn’t be further from the truth. We know eating disorders affect all communities. They affect men and women, people of all gender identities, affect all race ethnicity groups, all income groups, and all across the country, not just in urban areas like Los Angeles and New York but all across rural, suburban, and urban America.

The image of the Hollywood starlet as the only group affected by eating disorders has really kept this issue off the public health agenda. And the CDC just hasn’t been aware of what they were missing, which is true in most public health schools also where students don’t get really any education about what eating disorders are.

In fact, eating disorders include anorexia nervosa, which is the one people most often think of but also includes bulimia nervosa and binge eating disorder, which is by far the most common, affecting somewhere close to 4% of the US population, just binge eating disorder. Now, other eating disorders that may not reach full psychiatric criteria actually are even much more common than that. We know that around 30 million Americans will be affected by an eating disorder in their lifetime and probably double triple that or even more 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.

NOAH LEAVITT: I know that Striped is working with other national organizations– this group of 65 lawmakers to get the CDC to in a sense reinstate tracking of eating disorders and their surveillance systems, which I believe was done up until 2015. So, can you explain a little bit more about what you are hoping to accomplish but also why the tracking of eating disorders ended a few years ago?

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

What that meant was that there was really no surveillance anywhere in any of the CDC surveys because they weren’t doing it with any of the other surveys that reach youth or adults. The Youth Risk Behavior Surveillance System was the only one that was collecting data around eating disorders. When they dropped it in 2015, basically it’s radio silence from the CDC on anything to do with a disorder that affects 30 million Americans at minimum and actually has among the highest mortality rate of any psychiatric disorder. Another– that’s another fact that many people don’t realizing– and likely also professionals at the CDC don’t realize that this is a disorder that has among the highest mortality rate even compared to substance use, compared to depression, compared to schizophrenia, eating disorders is a big killer.

NOAH LEAVITT: And I know we’ve talked about this in the past when we’ve talked about your work around the modeling industry that, for example, an eating disorder, especially in adolescence can have these long-term health effects. So. can you expand a little bit more about that. What are some of the health effects that we see from eating disorders, not just while a person is– has an eating disorder or maybe even later in their life?

BRYN AUSTIN: Eating disorders can affect really all systems of the body. What we worry about in teenagers, one is the high mortality rate in teens. A teenager with an eating disorder, particularly anorexia nervosa at age 15, has 10 times the risk of dying in her teen years compared to another teen who doesn’t have an eating disorder. So that is first and foremost, what we’re most worried about and it can be because of damage to the heart, electrolyte imbalances. Also, suicide is a big risk in eating disorders.

The longer-term effects of eating disorders can include bone loss. So, when the hormonal system is disrupted, which can happen either from extreme weight loss or it can happen from the weight cycling or purging that can be part of an eating disorder, when there’s a hormonal system is disrupted, we know that bone is not accrued in a healthy way. And 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 problems that can be lasting. The effects of purging on dental enamel and tooth erosion can be a severe where someone a decade or two into an eating disorder may need their entire mouth of teeth and gums rebuilt because of the damage if their eating disorder is not detected early.

And that’s certainly why from a public health perspective we want people’s symptoms to be detected early so we can get them into care. We know that people respond better to treatment and faster and have fewer years of suffering and this kind of health harms– and harms to other aspects of their life, which might come up in dropping out of college, for instance, not being able to hold on a job, which can affect many– people affected by many kinds of mental health problems in this one also. So, early detection from a public health perspective is so important. And that’s why we need the CDC to be on board. And that’s why we have begun this project to first work with Congress and then to work with CDC to begin national surveillance of eating disorders in the American population.

NOAH LEAVITT: And can you expand that little bit about why tracking of eating disorders is so important, not just on the treatment side, but I’m guessing also on the prevention side? So, what can public health professionals accomplish through a better or more robust national tracking system?

BRYN AUSTIN: The CDC’s national data collection is so important to public health 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 if new– to see if new epidemics are emerging or if certain population groups are more effected. From the research that we have today, we have reason to think that there is increasing risk among boys.

We have good reason to think that there’s higher rates of eating disorder symptoms in boys of color compared to white boys. We’re starting to see data that veterans actually have much higher rates of eating disorder symptoms than had ever been recognized before. But we need national surveillance from the Centers for Disease Control, really the leading agency and public health agenda for the country. We need those data to be able to identify when we’re doing something right and when we need to mount a public health response.

NOAH LEAVITT: So, what would this tracking system look like from a practical perspective? How would the data be collected?

BRYN AUSTIN: The CDC already has a dozen or more standard tracking system surveys they have out in the field. I mentioned the Youth Risk Behavior Surveillance System, very important for high school and also middle school youth. They have the National Health and Nutrition Examination Survey, which clearly collects a lot of information about food, eating, weight, nutrition.

And this would make a lot of sense to include eating disorders in that also, particularly given what we know about how eating disorders undermine public health efforts to address the obesity epidemic, something that people working in that field absolutely need to know when eating disorders are also occurring in populations because we have to address both at the same time. You can’t address obesity alone without– if there’s also a presence of an eating disorder. You have to do both.

There’s the National Health Interview Survey, the National Survey of Family Growth. The CDC and others– the CDC runs a number of surveillance systems that already collect some data on mental health or some on nutrition, and these would be places where it could be very easy to include a few more questions to get at the symptoms of unhealthy weight control that might be signs of eating disorder symptoms, symptoms of binge eating disorder. These are the kinds of things that we really need to know about. And also abuse of weight control products or abuse of steroids, which we see more in boys and men also for body image concerns.

NOAH LEAVITT: So, in a sense, would tracking also allow you to keep an eye on some warning signs so to speak so that if you saw an increase in one sort of behavior that might be an indication of someone being at risk for anorexia or so on?

BRYN AUSTIN: Yes, being able to collect these data all across the country, it absolutely can help us identify warning signs so that we would be able to mount a public health response. So, we’ve seen more and more in recent years the use of dietary supplements for weight control. This is a product that’s been on the market for a while, but that industry is growing so fast, we see far more youth and young adults using these products. We also know that these products are not helpful.

They’re not medically recommended, and they can actually be dangerous. And they may pre-stage the development of an eating disorder potentially. We want to be able to monitor where these products are being used and to mount a public health response to these dangerous products and help to catch any kind of signs of someone going down the path of an eating disorder early so we can have public health programs in place to prevent eating disorders.

NOAH LEAVITT: So, one of the discouraging, but maybe not necessarily surprising statistics, is that only one in three Americans are receiving treatment for eating disorders. So how would a better tracking system help maybe alleviate that and make it so people are able to get the treatment for eating disorders?

BRYN AUSTIN: The treatment for eating disorders is really under-utilized in the US. Only a third of people with an eating disorder ever receive treatment. And when you look at the specific disorders, it’s even worse for binge eating disorder, which often is not recognized by clinicians and it’s not recognized by family or others who might get someone into treatment. Anorexia nervosa, because there’s the obvious sign of being extremely thin, sometimes family members help someone get into treatment or physicians do.

But otherwise there’s a real lack of treatment there. Clinicians don’t receive training hardly in– whether that’s medical school or residencies or nursing and other kinds of professionals, dentists also– they rarely get training in early detection. And so even they aren’t equipped to be able to refer people to treatment.

One of the real driving reasons why we wanted to work on this issue with the CDC and to help get eating disorders on their radar is because what we found is there needs to be data collected, and it needs to be collected by the leading voice in America on the public health agenda. What we found time and again is if you are not counted, you don’t count. We have to have those data so that we can monitor what’s happening in communities, what health issues there are affected by, any changes in incidence and prevalence and subgroups that are affected.

And then we can go back to whether it’s our local health department or state or federal health decision makers and say, look, we’ve got a problem. We need to be able to address this. We have to come up with ways that we can prevent this, detect it early, get people into treatment, or to serve a need for treatment if it’s really not being met as in the case of eating disorders.

NOAH LEAVITT: And you touched on it there, but I’m guessing one of the goals of this is also in a sense to change the narrative around eating disorders to reduce stigma.

And I see some similarities to the opioid epidemic where it’s needing this drug isn’t a moral failing. It’s a psychiatric disorder. So, is that part of what you’re trying to do here, to change how eating disorders are viewed, not by just public health professionals but even the general public?

BRYN AUSTIN: Yes, absolutely stigma is a big barrier. It’s a big barrier for all mental health conditions, whether that substance use or other kinds of mental health. And it most definitely is an issue in eating disorders. And we see that really wreaking havoc in a few ways.

One, the stigma will keep people from seeking help. They may not reveal to their dentist or their other health care provider or, if they are youth, may not reveal to their teachers, their school nurse, or their parents because they are embarrassed, because they feel like this is a sign of a moral failing and they should be able to figure it out on their own. Another way that the stigma really is undermining of our efforts is it keeps the health professionals and public health professionals from recognizing how serious of a problem it is. The stigma around it’s a character– basically, that belief that it’s a character flaw and that it has to do with vanity keeps public health professionals from recognizing what’s right there plain as day the very high mortality rate and the many, many millions of Americans affected by this.

So, these kind of things are– these kind of problems with stigma really exacerbate the situation and lead us to the place that we are now, where we’ve got no data being collected by the CDC, absolute ignorance on the part of the federal government in dealing with eating disorders around– from a public health perspective. The vast majority of clinicians receive none or very little training in how to even detect eating disorders much less treat it. And 2/3 of Americans with an eating disorder will never receive treatment in their lifetime at the rate we’re going now. It doesn’t have to be that way.

Eating disorders are treatable. We’ve got good treatments in place for most people that as long as we can get them access and overcome the barriers of stigma and health care access and affordability. Then we could get into a much better place around eating disorders.

NOAH LEAVITT: So, I think it’s an important point to follow up on, and basically what you’re saying is we have treatments. We know they work. But the problem is we just aren’t able to get enough people to utilize those treatments.

BRYN AUSTIN: People are not able to because of stigma or they’re not able to access treatment because of where they live and there’s no treatment providers. The lack of training within the health care system is also a barrier. So even motivated people who have who’ve been willing to seek help despite the stigma that they’re struggling with, often they can’t find treatment if they’re not living in a major city or an area where there is really good health care, mental health care access in particular.

So that puts people in a real bind even if they want to seek treatment or if they even recognize that they have an eating disorder. When we don’t have a health care workforce that’s trained adequately, and we have an enormous stigma out there that serves to really compound the barriers to people accessing the good treatments that we have available.

NOAH LEAVITT: This is really just the kickoff of a larger initiative, a larger push. So, what are some of the next steps here in order to eventually get the CDC to hopefully start including this in their tracking systems? What are some of the next steps, the next things you’re hoping to accomplish?

BRYN AUSTIN: So, we worked with several other national groups, so including Striped, we worked with the Academy for Eating Disorders, which is the world’s leading professional society for people specializing in eating disorders research and treatment. And we worked with the Eating Disorders Coalition and the National Eating Disorders Association. So particularly with epidemiologist at the Academy for Eating Disorders, we did months of research to do our background work to see what was the CDC doing now and were there surveys that should be able to include eating disorders because they’re most relevant. So that was many months of work.

Then we teamed up with the Eating Disorders Coalition to organize this effort on Capitol Hill where we talked to members of Congress about reaching out to the CDC and sending letters to Director Fitzgerald of the CDC, saying that members of Congress really urge her to put eating disorders on the CDC’s radar. That has been done. Director Fitzgerald has received the letters from 17 senators and 48 members of the House of Representatives in the US Congress. And they are now on notice that this is an issue that Congress recognizes is important for Americans, and it should be important for the CDC.

The next step will be to sit down with the CDC and probably also sitting down with staff at the National Center for Health Statistics to talk about where can measures of eating disorders be added into the surveys? Which questions specifically, how should they be worded, which questions already exist that they can pick up and will be most useful. And we certainly want them to be asking questions that are relevant to the various types of eating disorders even when the Youth Risk Behavior Surveillance System collected information that was an eating disorder behaviors, they did not collect anything related to binge eating disorder.

So, they didn’t collect anything around binge eating or feeling out of control around food and some of the ways we might assess that. So that’s never been collected by the federal government on these surveillance tools. We absolutely need activity added. That’s– more Americans are affected by binge eating disorder than any other eating disorder. And that certainly cuts across all communities also and has closer to gender parity and the number of men and women who are affected by binge eating disorder. We’d want to be able to sit down with our scientists, specialists, and eating disorders epidemiology to sit down with the CDC’s epidemiologists and talk through what are the best way to measure these symptoms and which surveys does it make the most sense to put which questions in.


That was our conversation with Bryn Austin on eating disorders.

If you want to learn more about eating disorders and the effort to track them, we’ll have information on our website,

That’s all for this week’s episode. A reminder that you can always find us on Soundcloud, iTunes, or Stitcher.

November 30, 2017 — Around 30 million Americans will be affected by an eating disorder in their lifetime, but these psychiatric disorders are not regularly tracked by the Centers for Disease Control and Prevention (CDC). That’s why a coalition led by Harvard’s Strategic Training Initiative for the Prevention of Eating Disorders (STRIPED) is asking the CDC to monitor eating disorders as a part of national disease surveillance efforts. In this week’s episode, we speak with Bryn Austin, professor in the Department of Social and Behavioral Sciences and director of STRIPED, to learn how better data on eating disorders could improve treatment and prevention.

You can subscribe to this podcast by visiting iTunes, listen to it by following us on Soundcloud, and stream it on the Stitcher app.

Learn more

Fact sheet on eating disorders (PDF)

CDC Eating Disorders Health Monitoring Project