We’re better off when we unstick the stereotypes around eating disorders

Eating disorders affect a population the size of the state of Texas, cost the economy tens of billions of dollars, and kill 10,000 Americans per year. If eating disorders are so common, expensive, and deadly, why don’t we talk about them more? Bryn Austin, director of the Strategic Training Initiative for the Prevention of Eating Disorders (STRIPED), says we need to start by getting rid of our “sticky” stereotypes about who is affected by eating disorders.

Guest: S. Bryn Austin, professor in the Department of Social and Behavioral Sciences at Harvard Chan School, a faculty member at Boston Children’s Hospital, and director of the Strategic Training Initiative for the Prevention of Eating Disorders (STRIPED).

Episode Transcript

Anna Fisher-Pinkert: From the Harvard T.H. Chan School of Public Health, this is Better Off. A podcast about the biggest public health problems we face today . . .

Bryn Austin: One of the really disturbing pieces of the last few decades is that the medical and public health community has basically played into the hands of this dieting industry.

Anna Fisher-Pinkert: . . . and the people innovating to create public health solutions.

Bryn Austin: We need to bring these conditions out into the light of day where public health leaders, medical leaders, government leaders are standing up and taking responsibility.

Anna Fisher-Pinkert: I’m your host, Anna Fisher-Pinkert.

What if I told you that there is a preventable health condition that affects a population the size of the state of Texas, costs the economy tens of billions of dollars, and kills 10,000 Americans per year. You’d be pretty worried, right? You’d expect leaders in health care, in science, and in government to absolutely freak out and get on it! Okay, now what if I told you that I was talking about eating disorders? Honestly, I was pretty surprised by this information. I grew up with a single image of what a person with an eating disorder looked like, that I readily admit came from TV and movies. And because I had this stereotype in my brain, I assumed that eating disorders were limited to young, white, suburban women. So in my mind, they couldn’t be all that common.

Bryn Austin: So we see this about eating disorders: They are common, deadly, and expensive. And yet, the stereotypes stick. The stereotypes stick, and we need to find ways to unstick it.

Anna Fisher-Pinkert: That’s Bryn Austin. She’s a professor in the Department of Social and Behavioral Sciences at Harvard Chan School, a faculty member at Boston Children’s Hospital, and director of STRIPED: the Strategic Training Initiative for the Prevention of Eating Disorders.

And that word prevention is very, very important. Because this is one of those cases where we’re talking about a problem that can be prevented—if we just start looking in the right places for solutions.

So this week, we’re better off with Bryn Austin, expert in eating disorders prevention.

Remember that phrase: Common, deadly, and expensive. Let’s start with how common eating disorders are:

Bryn Austin: Over 30 million Americans, or almost 10% of our population, will have an eating disorder in their lifetime. And it affects people of all genders, races, ethnicity groups, sexual orientations, body sizes, ages. Nearly 2 million children in the U.S. alive today will have an eating disorder before they’re even 20 years old.

Anna Fisher-Pinkert: Eating disorders are deadly:

Bryn Austin: Eating disorders are among the most deadly mental health conditions, which few people realize, and kill over 10,000 Americans every year.

Anna Fisher-Pinkert: That’s about as common as deaths from drunk driving crashes. Eating disorders are also expensive.

Bryn Austin: They cost the U.S. economy almost $65 billion a year. And this cost actually rivals or exceeds the estimates for other serious conditions. For instance, Parkinson’s disease is estimated to cost the U.S. economy just over $50 billion a year. Schizophrenia, the estimates range from $27 billion to $111 billion. Eating disorders are right smack in the middle of that.

Anna Fisher-Pinkert: One important thing to note is that while popular culture usually depicts two eating disorders, anorexia nervosa and bulimia, those are not actually the most common eating disorders.

Bryn Austin: Much, much more common is binge eating disorder and something called OSFED—Otherwise Specified Feeding and Eating Disorder (we’ll just call it “OSFED” for now) It’s generally eating disorder symptoms that don’t quite hang together to meet the other definitions, but still can be very debilitating, very entrenched, and require a good deal of treatment.

Anna Fisher-Pinkert: So why has there been so little action on eating disorders? Bryn Austin thinks those “sticky” stereotypes are partly to blame. They prevent us from seeing the full extent of who is impacted by eating disorders.

Bryn Austin: Here’s an example: We’ve known for years, maybe close to two decades, that boys of color have higher rates of eating disorder symptoms than white boys. But you can probably count on one hand how many pediatricians in this country know that, or how many school counselors in this country know that. What are we doing as a nation to reach these boys? These young men?

And we also know that even though people of color, communities of color, have similar or higher rates of some types of eating disorders, they are half as likely to access care and treatment for their eating disorder, compared to white people with eating disorders. The inequities are just rife throughout the system now.

In part because of the stereotypes, clinicians are not looking for it in communities of color. They’re not looking for it in boys and men. They’re not looking for it in people, older, middle-aged or older up there. And they’re missing it in that way, and communities don’t know because they’re working with the same stereotypes.

Anna Fisher-Pinkert: Another stereotype is that eating disorders only affect people in wealthy or at least middle-class families. That’s just not true. Eating disorders can and do impact people who are financially struggling.

Bryn Austin: Food insecurity increases as a risk of eating disorders. We have new research from a major study in Minnesota with young people and young adults during the pandemic, finding that those young people who were facing especially severe financial stressors have much higher rates of disordered eating and symptoms of eating disorders.

Anna Fisher-Pinkert: When you have limited food available, or limited healthy food available, that can change your eating patterns to include binging or trying different weight control measures. One of the things that most disturbs Bryn Austin is the growth of the diet pill industry, which remains largely unregulated.

Bryn Austin: The pressures on young people to be using the over-the-counter diet pills, to be using steroids or laxatives, for instance, these pressures are intense for our society and they’re calculated.

Anna Fisher-Pinkert: These weight control products are not effective at controlling weight and they can have harmful side effects. They are also more common in Latinx communities. Ten percent of Latina teen girls use diet pills every month, compared with only 6% of white teen girls.

Bryn Austin: They’re targeting Latinx communities and they’re targeting lower-income consumers who may not have access to other helpful ways to get healthful nutrition or activity and instead are being pressured to resort to these inexpensive, but also potentially very dangerous methods of trying to manage weight. Now meanwhile, [from] the public health and medical community, it is a constant drone: You must keep your weight down. You must lose weight. It is your weight that’s unhealthy. Anything you can do to address it is in order. That’s the message that people are hearing, but it couldn’t be further from the truth. And that’s a dangerous message.

Anna Fisher-Pinkert: This is where Bryn Austin thinks her own community, the public health community, has exacerbated the problem – and unintentionally contributed to making eating disorders more common.

Bryn Austin:] I think one of the really disturbing pieces of the last few decades is that the medical and public health community have basically played into the hands of this dieting industry. And it made it just that much easier for them to exploit and profit off of weight stigma, and fat-shaming, and the economic inequities around what tools people even had available to them in order to try to create healthier food environments at home. There was this industry ready to go, and we played right into it. Public health and medicine played right into it.

Anna Fisher-Pinkert: Bryn Austin pivoted from a career in journalism to a career in public health in the 1990s, when the “war on obesity” was something that every American was exposed to through advertising, news, and, of course, daytime TV.

Bryn Austin: The medical and public health communities at the time were not taking into account that all of these warnings and communications around the so-called war on obesity, they weren’t entering into the American consciousness as if on a blank slate, not in the least. Instead, all of these communications and policies and programs around obesity were instead like a tanker of gasoline on an already raging wildfire of weight stigma, of misogynist and racist body shaming, of structural sizeism. And by that, what I mean is the structural oppression or exclusion or discrimination against people living in larger bodies. So what better conditions to catapult that dieting industry into the multi-billion-dollar industry it is today?

Anna Fisher-Pinkert: Breaking down those harmful ideas about body size is one key part of preventing eating disorders in the U.S. But that doesn’t help people who are already diagnosed with an eating disorder. Even with a diagnosis, there are major barriers to treatment and recovery.

Bryn Austin: Nowhere in the world, not in the U.S., not in the U.K., or anywhere else in the world, do the majority of people who develop an eating disorder have access to evidence-based treatment.

Anna Fisher-Pinkert: And even if you do get care, it might not be covered. While Medicare covers nutrition care for people who have end-stage renal disease and diabetes, it is not covered for people who are diagnosed with eating disorders.

Bryn Austin: The standard of care in eating disorders always involves nutrition care, mental health care, and medical care. That’s essential. It’s essential to recovery and to survive an eating disorder and get back on your feet. People on Medicare are already often struggling economically, already are facing a number of barriers in equitable access to resources in different ways. And then this is on top of it.

Anna Fisher-Pinkert: If our cultural blindness to eating disorders is making them common, and a lack of access to care makes them deadly, what makes them expensive? STRIPED conducted a study to try and understand the economic impact of eating disorders, working with Deloitte Access Economics. And that’s where they came up with a very large number.

Bryn Austin: So the estimate is $65 billion per year.

Anna Fisher-Pinkert: And I was surprised to learn that the majority of those costs aren’t actually from health care.

Bryn Austin: The number one area where we’re seeing that the dollars rack up is around productivity. That is the workplace. So certainly the health care system is a piece of it, but it’s a minority of, ultimately, the costs to the economy.

People are not able to hold down a job. Parents needing to take care of children and losing a job over that.

In our estimates, it’s close to $50 billion out of the total $65 billion that can be identified as productivity losses—so, affecting the workplaces and families’ ability to work, to bring in an income.

The majority of people affected by eating disorders are in the prime of their working years. So this is different from some other conditions that might have their higher impact in the later years, among elders. With eating disorders, they start very young and have their impact on people in their prime working years.

Anna Fisher-Pinkert: This is where Bryn Austin thinks change can begin. Even if politicians don’t get fired up about eating disorders, they DO tend to get fired up about the economy.

Bryn Austin: We now have the figures. We knew that we needed to be able to go back to policymakers and lay all those numbers out for them and show them—this is what eating disorders are doing to businesses in our communities, to families, to individuals, and to our economy in general. And then we could offer the solutions. And it worked so far in terms of getting the attention. We’ve had dozens and dozens of meetings with policymakers and healthcare company heads around sharing these numbers.

Anna Fisher-Pinkert: And now that STRIPED has their attention, they’re offering solutions.

Bryn Austin: We need the federal government to evaluate and correct the insurance coverage gaps.

We are working with colleagues in Washington led by the Eating Disorders Coalition, which is a community group dedicated to educating and nudging the federal government to take more responsibility for eating disorders, and working with lawmakers—Representative [Judy] Chu, Representative [Jackie] Walorski, and Senator [Maggie] Hassan and Senator [Lisa] Murkowski—in Congress to push forward the Nutrition Care Act right now.

Anna Fisher-Pinkert: In specific, the group is looking to fix Medicare Part B – the section that excludes nutrition care for eating disorders. They also want to see better tracking of eating disorders by the CDC and other federal health agencies.

Bryn Austin: Right now, the federal government does almost no monitoring of eating disorder symptoms or behaviors.

Perplexingly, the CDC eliminated the assessment of eating disorder symptoms in the Youth Risk Behavior survey after 2013. They had been doing it for 10-plus years. And then mysteriously, it disappeared. And since then we’ve had no ongoing national monitoring of what’s happening in young people in the country around eating disorders.

The only way we’re going to be able to progress in our public health understanding and be able to monitor prevention efforts is if the CDC and other agencies will put eating disorders back on their radar.

Anna Fisher-Pinkert: Another thing that would improve the situation is to get more people into treatment sooner, and that means screening people for eating disorders during other routine screenings for health and well-being.

Bryn Austin: We need routine screening for eating disorders in children and adults and that can be in primary care, can be at schools, can be at workplaces, and other settings. We have new research from STRIPED showing that screening can be cost-saving.

Anna Fisher-Pinkert: And more health care providers need to know how to screen for an eating disorder so that they’re looking past their own biases and using an evidence-based approach.

Bryn Austin: [At STRIPED we created a brief online training and it’s available on our website for pediatric primary care providers. So doctors, nurses, school nurses, too, can go to our website and sign up for a very brief training in basic simple screening for eating disorders and how to do referrals. Any listeners who are parents, I encourage you to share the link to the brief training with your child’s pediatrician or the school nurse, also.

Anna Fisher-Pinkert: Finally, we need more investment in research.

Bryn Austin: The NIH—National Institutes of Health—funded research for Alzheimer’s disease at roughly $239 per head. That is $239 per person affected by Alzheimer’s in this country. Autism—$109 per person affected by autism. Schizophrenia, another serious condition, NIH funded research on schizophrenia at $69 per person affected by that serious illness. For eating disorders, though, NIH awarded approximately $1 per affected person.

Anna Fisher-Pinkert: I asked Bryn Austin if she thought those same biases around eating disorders also impact how that research is funded. And she said, basically, yeah.

Bryn Austin: That stereotype about eating disorders runs through every sector, every level, every corner of our society. And like I said, the stereotypes about eating disorders are sticky. And the decision-makers at NIH, peer review scientists, have been exposed to and, for the most part, have those stereotypes still burned into their consciousness about what eating disorders are. And the lack of seriousness in how the country has approached it has been deadly. These stereotypes are deadly. We’ve got to find a way to have a serious and meaningful public health approach to address this problem.

Anna Fisher-Pinkert: While I was talking to Bryn Austin, I was reminded of another health issue that has gone through a major cultural shift in the last decade: opioid abuse. There are still stereotypes that surround the opioid crisis, for sure, but it’s a topic that’s getting a lot of attention in the media, and attention from policymakers.

Bryn Austin: Like the opioid crisis, with eating disorders, yes, individuals are profoundly affected, but so are their families, their loved ones, their workplaces, their schools, their communities. It’s a whole community issue when someone has an eating disorder. And the shame and the stigma around opioids, opioid use and dependence, the shame and the stigma around other mental health conditions, they are just as intense with eating disorders. We need to bring these conditions out into the light of day where public health leaders, medical leaders, government leaders are standing up and taking responsibility.

Every 52 minutes in this country, somebody’s sister, brother, child, or loved one dies as a direct result of an eating disorder. If there is one key takeaway from our research, from the work of STRIPED and so many of our colleagues, it’s that our nation’s policymakers need to step up efforts to effectively address eating disorders. And there is no time to waste.

Anna Fisher-Pinkert: That’s all for this week. If you want to learn more about visit hsph.harvard.edu/striped.

You can find us on Twitter and Instagram @HarvardChanSPH.

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I’m Anna Fisher-Pinkert, host and producer of Better Off a podcast of the Harvard T.H. Chan School of Public Health.