School-based nutrition and BMI screenings are meant to improve the health of students, but emerging evidence shows that, not only aren't they helping, they also appear to be triggering deadly eating disorders in children. Now, a small group of activists is taking on the system—and making a difference.

Healthy-living programs in American schools may be anything but healthy. (Photo: Joe Toreno; Model: Nadia Warner)

Like many parents, Leslie Rosen hadn't thought at all about eating disorders until the day 11-year-old Jane, her sixth-grader, stormed through the front door of their suburban home in the Northeast.

Little by little, she pried from her daughter the story of what had happened in gym class. With everyone watching, each student was called to the front of the class to be weighed and measured, after which the gym teacher calculated their BMI and announced it to all. Jane's weight had always been perfectly normal, and her BMI measurements bore this out.

But that's not what Jane saw.

She had started sixth grade at a new school and, always shy and quiet, had tremendous difficulty making friends, which only darkened the gray cloud already hanging over her. The popular girls were all thinner than her, Jane believed, and they appeared happy, never having to sit through lunch period completely alone. After class, she saw these girls poking and pinching their bodies in the bathroom mirror, complaining about how fat they thought they were. If they were fat, Jane believed, then she must be humongous. The way Jane saw it, her weight might explain why she had been left out of her school's social circle. Armed with her new BMI numbers, she vowed that she would lose weight.

"I don’t think she even knew what a BMI was before that," her mother says. But as soon as she did know, it was all Jane could think about.

"It started to play into this idea that losing weight might be the way to feel better and have more friends. That's when she first got that idea about what to do about how she was feeling," Leslie says. Jane stopped eating meat. Her drive to eat less led to her subsisting on a few hundred calories per day and forcing herself to throw up what little she did eat. Jane hid her disorder well—so well that, once Leslie realized just how bad things had gotten, she felt compelled to take Jane to a specialized treatment program.

By the time she graduated high school, Jane had been hospitalized three times for her eating disorder and attended three separate eating disorder programs, sometimes thousands of miles away from her family.

The causes of any eating disorder are complex, but to Leslie, one thing is certain: The public BMI test is where things went wrong for Jane.

"I don't believe that the public school weigh-in and BMI screening caused her eating disorder, but rather they were significant factors, among others, which triggered her illness," she says.

The Rosens' experience isn’t an anomaly. Around the country, many psychologists and families are noticing an increasing number of children and teenagers with eating disorders that appear to be triggered by school-based obesity-prevention programs, ranging from discussions of healthy food in class to so-called "BMI report cards" that report a child's body mass index in a letter to parents.

Proponents of such programs say that something must be done, given that one-third of American children are overweight or obese and likely to face a panoply of health issues like high blood pressure and diabetes as a result.

The goals of these programs may be well-intentioned, says University of Minnesota epidemiologist Dianne Neumark-Sztainer, but the results have been mixed at best.

(Photo: Joe Toreno; Model: Nadia Warner)

"There have been reports from health-care providers on kids coming to see them after having this report card go home, after having been put on a diet, after having been teased about their weight by other kids and having that be one of the early steps along the long and complicated road to an eating disorder," Neumark-Sztainer says.

To a small but committed group of eating disorder advocates, BMI report cards and similar efforts aren't just harmful: There's also a startling lack of evidence that they even work. Given this dismal track record, Rosen and other parents and people affected by eating disorders have taken to Capitol Hill to lobby for changes to these school health programs. Their work is beginning to gain traction, even at the Centers for Disease Control and Prevention (CDC), the federal agency most vocal in raising the alarm about childhood obesity. The result of this lobbying could be the development of initiatives like New Moves, which focus on nutrition and physical activity as goals in and of themselves—a shift that could help prevent obesity without risking eating disorders among young people like Jane.

No one knows exactly what causes eating disorders such as anorexia, bulimia, and binge eating disorder, but emerging research shows that they arise from a complex interaction of biological and environmental factors. Although many sufferers eventually recover, it can take years, and treatment can cost hundreds of thousands of dollars. About one-third of sufferers remain chronically ill, and up to 20 percent of these will die from their illness, most likely from cardiac arrest or suicide. When psychologist Kathleen Kara Fitzpatrick sees children at the Stanford University Eating Disorders Clinic, she finds that nearly all of them went through a period in which they burned more calories than they ate, a process that seemed to set the disorder in motion. This negative energy balance can be created by an illness, a growth spurt, increased training for a sport, or even well-intentioned exhortations to "eat healthy," as they learned in school.

"Even mild restriction can create a calorie deficit," Fitzpatrick says, "and this energy imbalance reinforces behaviors that reinforce restriction," creating a vicious cycle of ever-increasing starvation that the culture, perversely, seems to reward.

For some children, Fitzpatrick says, school-implemented programs of healthy eating seem to trigger a cycle of greater and greater food restriction, as they did in Jane. But for about 15 to 20 percent of us, periods of food deprivation lead to overeating, binge eating, and, ultimately, weight gain. Some people become so distressed at the loss of control over their intake that they respond by forcing themselves to vomit, taking laxatives, over-exercising, and fasting. Even when this behavior doesn't reach the severity of a clinical eating disorder, Neumark-Sztainer says, it will still have a huge impact on a patient's quality of life.

Efforts to improve kids' eating habits—during gym class, recess, or home economics—have been in the curriculum for generations, but having kids write food diaries and track their exercise as part of class assignments really only began in 1999, right after the National Center for Health Statistics released its first nationwide assessment of childhood obesity levels. Arkansas first began sending home BMI report cards in 2003. Other states quickly followed suit, including New York, Pennsylvania, and Tennessee. In 2006, federal guidelines required all schools participating in the school lunch program to institute a "wellness policy," which most districts implemented by teaching nutrition and, in some cases, measuring BMI.

No one doubts that these policies are well-intentioned. It's impossible not to want children to grow up healthy and happy. And the current data says that, for many children, this isn't happening. Most children don't eat the recommended five servings of fruits and vegetables, nor do they play vigorously for an hour a day. Since children spend much of their day at school, it seemed logical to intervene there.

(Photo: Joe Toreno)

Proponents of these programs argued that the nutritional curriculum would help parents recognize potential weight problems in their children, especially given that an astonishing 95 percent of parents believed their overweight children looked perfectly healthy. In an ideal world, these parents would encourage more fruits, vegetables, and exercise to help improve their children's health. But that's not what happened. In a large longitudinal study of adolescents, Neumark-Sztainer and colleagues found that parents who knew their kids were overweight did not start serving more fresh produce, nor did they encourage more exercise (both of which have been linked to healthy weight in teenagers). In fact, these parents were significantly more likely to put their children on diets that focused myopically on restricting calories—which, as Neumark-Sztainer's work shows, leads to higher levels of weight gain in young adulthood. "If a parent finds out or realizes that their child is overweight and then they encourage them to go out and diet, it can be counterproductive," she says.

The CDC never encouraged states or school districts to mandate BMI testing in students. Even on its own website, the Center notes that BMI testing is not the answer: "There is insufficient evidence to conclude whether school-based BMI measurement programs are effective at preventing or reducing childhood obesity," announced a 2007 study in the Journal of School Health.

But is there proof that such initiatives are smart? "School districts are passing policies ahead of the evidence," says Allison Nihiser, who works within the division of population health at the CDC.

An independent 2011 study of the Fitnessgram program in California, which measures, among other things, cardiovascular fitness and BMI, failed to identify any benefits, which the researchers believe is due to the fact that parents aren't given any information or guidance for interpreting their child's results. The CDC also encouraged schools to implement social safeguards, such as not weighing and measuring in public, although the CDC did not establish a method for monitoring or enforcing these safeguards.

Rosie Buccellato's school certainly didn't enforce them.

Rosie, always lean as a greyhound, was weighed and measured along with her entire second-grade class. Each child's BMI was announced, and, at the end of class, the child with the lowest BMI was applauded. That child was not Rosie. Devastated and humiliated, she began to exercise in secret, running up and down the stairs when her mother was not looking. Her mother, who had watched her own sister struggle with anorexia, immediately recognized the problem, but no one in suburban Detroit was willing to treat a seven-year-old for an eating disorder. Rosie's anorexia went untreated for more than six years before she was first diagnosed. Now 24, she spent her high school and college years in and out of hospitals, and continues to struggle with her disorder.

"Until that gym class, I never thought anything bad about my body," she says. Now she can't seem to stop.

And it's not always public humiliation or BMI measurements that do damage. Even simple lessons on nutrition have the potential to do harm.

"Kids don't always hear things necessarily the way that they are intended," says Yoni Freedhoff, a family doctor at the Bariatric Medical Institute in Ottawa, Canada. A teacher's instructions to reduce fat intake may be translated as "all fat is bad" by young children.

That's how eight-year-old Sylvia interpreted nutrition lessons in her third-grade class in a small town in the Midwest. When the teacher said to eat less sugar and junk food, Sylvia interpreted it as: "Never eat these things." Not long after the lesson, Sylvia scribbled in her journal that her goals for the summer were to eat better and get fit. Within months, anorexia took over. Obsessed with exercise, she became unable to sit down at all, instead hovering inches over her chair in class. She ran to the pencil sharpener several times an hour in a frantic attempt to burn calories. Unbeknownst to her parents or siblings, she habitually locked herself in a closet in the middle of the night to exercise. Her mother, Jessica, caught her once, finding Sylvia soaked in sweat from doing crunches for hours. What terrified Jessica to her core, however, was when she asked Sylvia to eat a single Starburst, her favorite candy.

"It took three hours of screaming, writhing, and agony for her to eat this little Starburst," Jessica says. Shortly before Sylvia's 11th birthday, her BMI was so low, her blood pressure so unstable, and her heart so weak that she was hospitalized for a month.

Sylvia's story feels eerily familiar to psychologist Leslie Sim, who directs the eating disorders program at the Mayo Clinic.

"We see this all the time. Parents will say, 'I just thought they were getting healthy.' And they didn’t see it as a problem until it was way too late," she says.

Sim says a surprisingly large number of her patients cite school health programs as the spark that catalyzed their disorder, even among children who were never even remotely overweight. A 2013 study in the journal Eating Disorders tracked a handful of adolescents—both boys and girls—who reported that healthy-living programs at school first triggered them to begin cutting back on their eating. Three-quarters of these children had to be hospitalized.

"In our society, we have been scared to death about the harms of obesity. Kids don't want to be mistreated. They don't want to be bullied. So they take these lessons about healthy eating and over-incorporate them into their lives," Sim says.

Over the last decade, stories like Jane's, Rosie's, and Sylvia's have flooded Kathleen MacDonald's inbox every day. MacDonald, an eating disorders advocate who works for the national Eating Disorders Coalition, was horrified at the never-ending series of seemingly well-intentioned school programs that appeared to be harming and even killing young people across the country—without any evidence that the policies benefited other children. MacDonald thought that the EDC, the group that lobbies on Capitol Hill to advance the recognition of eating disorders as a public health priority, was perfectly positioned to do something about the problem. The question was how.

When MacDonald first got involved with the EDC, she began to see testimonials documenting the harms inflicted by school-based obesity prevention programs. Her first impulse was to work to ban BMI measurements in schools. She soon realized that would never happen. Faced with other important issues, such as the refusal of insurance companies to cover many forms of eating disorder treatment, MacDonald shifted her attention to issues on which she could gain more support among legislators. With a new glut of letters from desperate parents and sufferers, MacDonald realized she could no longer ignore the subject.

(Photo: Joe Toreno)

In August 2014, she met with Joel Richard, a legislative assistant for Representative Ted Deutch (D-Florida). She arrived at the meeting with a giant stack of documents that outlined her main concern: that school districts and the general public were under the misapprehension that school-based BMI testing was safe, effective, and approved by the CDC, when this was not the case at all. She wanted Deutch's help. She wasn't disappointed.

Deutch urged other lawmakers to sign a Dear Colleague letter addressed to Tom Frieden, director of the CDC, asking him to "to communicate guidance and recommend best practices ... so that schools can administer BMI screening without inflicting unintended harm on students." Even as the letter was being circulated on Capitol Hill for additional signatures, the CDC was already making changes, in concert with Deutch's office. The agency revamped its school health website, making information about safeguards more prominent and easier to access. The CDC also reached out to schools that had received CDC grants, notifying them of the changes and reminding them of the need for safeguards. In January of 2015, Frieden formally responded to Deutch's letter, affirming that the CDC does not promote school-based BMI screening and that "any information from our agency regarding school-based BMI screening is accompanied with the risk and safeguard information."

It was a major victory for eating disorder advocates, and other grassroots efforts have sprung up around it. Building on Massachusetts' decision to stop sending BMI report cards in 2013, parents in other states have begun lobbying for similar legislation. Some parents of children with eating disorders have started to educate local school boards on the need for safeguards. Even students themselves are taking action, as in 2014, when Ireland Hobert-Hoch, a 13-year-old Iowa girl, refused to be weighed at school, saying it was none of the school's business.

As they work on this issue, eating disorder and obesity researchers have begun to find ways to improve children's health without doing harm. To Freedhoff, schools can achieve this without even saying a word—by doing simple things like eliminating vending machines, soda, and fast food from cafeterias, for example.

"Schools are not paragons of healthy virtue," Freedhoff says. "Think of how idiotic it is that schools are teaching kids what not to eat in one class and then serving it to them in their cafeterias."

The key to making kids healthier—all kids, regardless of how much they weigh—is to take the focus off weight and put it back on health. Neumark-Sztainer's healthy-lifestyle program is targeted at middle and high school girls, the group at highest risk for eating disorders. The program helps girls become more physically active and eat a wide range of foods, all while promoting positive body image and self-worth. Work has shown that the program is effective in reducing unhealthy weight-related behaviors that are linked to both future weight gain and future eating disorders.

"We need to teach kids to value their bodies and themselves, regardless of how they look or how they feel about themselves," Stanford's Fitzpatrick says. "The right time is right now."

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