‘That scares me’: New childhood obesity guidelines still face a long road to consensus

This is part of a series about new obesity drugs that are transforming patients’ lives, dividing medical experts, and spurring one of the biggest business battles in years. Read more about The Obesity Revolution.

The rise of childhood obesity in the United States did not happen quickly. But, to medicine, “it sort of cropped up overnight,” says Bob Siegel, a pediatric obesity specialist at Cincinnati Children’s.

Despite the fact that obesity rates among children and adolescents have been steadily climbing since the 1960s, researchers and clinicians have had no consensus approach to slowing down the “obesity epidemic.” The average medical school student spends less than a day learning about obesity, despite the fact that over 40% of adults and 1 in 5 children in the U.S. have it, according to some estimates.

So when, in January, the American Academy of Pediatrics released its first formal clinical practice guidelines centered on the screening and treatment of young patients with obesity, many eyes turned to the document.

Unlike earlier, more general guidance that recommended a progression of treatment through various stages, the new guidelines say there shouldn’t be “watchful waiting.” They call for early diagnosis, intense counseling, and two new aggressive options for children with obesity: weight loss drugs for children as young as 12 who are in the 95th weight percentile, and consultation for weight loss surgery for teenagers who have severe obesity (120% of the 95th percentile or a body mass index of 35 or more).

Now that experts have had a couple of months to comb through the 100-page document, from executive summary to supporting material, one thing is clear: There is still no consensus on how best to approach obesity in children.

STAT spoke with more than a dozen clinicians, researchers, and advocates about the guidelines. Many praised the guidelines’ thoughtfulness in noting the effects of stigma and unequal access to resources, as well as the focus on fast action and non-pharmaceutical interventions like motivational interviewing. Leaders of the AAP committee enlisted to write the guidelines have given scores of interviews explaining how researchers combed through available evidence, and stressing that medications and surgery should not be used without intensive lifestyle therapy.

“There’s a long road ahead, and we recognize that,” lead guideline author Sarah Hampl told STAT. “But we feel that this was a good continuation of previous work that had been done and reflected the latest state of the evidence, which, as we all know, is evolving rapidly.”

New guidelines were much-needed, many clinicians said. And the AAP panel was given a tall task: trying to distill a diverse body of evidence down into coherent recommendations, and signal hope on an issue that hasn’t budged, all while accounting for everything from racism to adverse childhood experiences and children with complex health care needs.

But experts in obesity medicine, nutrition, eating disorders and sociology, as well as fat activists and others, have also lodged numerous critiques. Among their complaints is a focus on weight instead of health, a lack of clarity or directness about who the recommendations are for, too little input from various subspecialists, a reliance on mediocre or limited data, and a downplaying of the long-term implications of drug treatment and surgery.

Many told STAT that the guidelines were out of touch with reality, recommending treatments that are inaccessible to most patients who need them, and relying on physicians who might not have the adequate training — or time — to deliver such care. “I think primary care providers were caught off guard by this and probably feel like they’re being burdened with something that they’re not prepared to take on,” said Siegel, who is a fellow of the AAP and on the board of the American Board of Obesity Medicine. (He has also received research funding from Vivus, the maker of weight-loss drug Qsymia.)

And while the guideline authors devoted a section to the complex environmental, social, and cultural factors that contribute to obesity, some say there wasn’t enough of a focus on the potential for greater weight stigma, or the risk of disordered eating, which a recent systematic review suggested is more common in children and adolescents with a higher body mass index (BMI).

Coincidentally, the guidelines were published about two weeks after the FDA approved Wegovy, a weight loss drug, for children 12 and older who have a BMI at or above the 95th percentile for their age and sex. The promise of effective weight loss treatments has kickstarted what some consider an obesity revolution, with the potential to reshape the global drug market and with it, our understanding of health and disease.

But obesity is fraught on every level. Even basic issues, like the validity of the BMI as a system of measurement or whether obesity is a chronic disease, are up for debate. The divide within medicine has also been made more complicated by a cultural movement pushing for inclusion and celebration of people in larger bodies.

“I’m not embarrassed to say there’s been a shift in my own mindset,” said Megan Kelsey, medical director of the lifestyle medicine and bariatric surgery programs at Children’s Hospital Colorado. Overall, Kelsey found the AAP guidelines well-done, and reflective of shifting ideas. When she started her career in medicine, terms like “at risk for overweight” were popular — “we tiptoed around the issue,” she said. Then for a time, clinical language was blunt: A patient was overweight or had obesity. In recent years, language has shifted into more tactful phrases, like, “struggles with weight,” or “elevated body mass index,” edits that Kelsey says help make the conversation about a health issue, and not about the person’s outward appearance. Fat activists often support a simple approach: using the word “fat” as a descriptor, just without the negative connotation.

Some clinicians, at the urging of patients, have embraced a more weight-neutral dogma that is angled away from BMI as a key measure of health. But still others question whether obesity is a disease at all, or just a way of pathologizing fatness and of disease-mongering — expanding the pool of sick people to create a bigger market for drugs and other therapies.

“There is no non-stigmatizing care in the name of obesity prevention or treatment,” said the Association for Size Diversity and Health, the nonprofit advocacy group that in 2013 co-created the Health At Every Size curriculum for students and health workers.

And yet: Children are struggling with what we used to consider adult diagnoses, correlated with higher weights. “Kids are having trouble with things like cardiovascular disease risk. They’re having liver disease risk. We’re seeing kids with prediabetes, diabetes,” said Treah Haggerty, director of the family-based pediatric medical weight management clinic at WVU Medicine Children’s Hospital in West Virginia. “So I see more concern in us not having the conversation and not putting more effort into understanding how to treat obesity comprehensively.”

Several clinicians STAT spoke to were internally conflicted. They appreciate the AAP’s effort, and see the need for better obesity treatment guidelines, but struggle to embrace some of the more serious recommendations, such as for weight loss drugs and surgery.

Does grade-C evidence pass the test?

When she saw the startling drug and bariatric surgery recommendations in the new pediatric guidelines, Paula Quatromoni put her epidemiologist hat on and started digging. Chair of the Department of Health Sciences at Boston University and an associate professor of epidemiology, Quatromoni was sifting through footnotes deep in the document, looking for one thing: the evidence.

The proof, she said, was paltry. Data used to recommend consultation for bariatric surgery came only from observational studies and case control studies — no randomized controlled trials, the gold standard of research, which more thoroughly protect against potential bias.

Hampl, the lead guideline writer, said the pool of evidence was first gathered, graded, and synthesized by an evidence review panel, starting in 2018. That panel screened nearly 16,000 abstracts according to AAP protocol in order to arrive at a final list of 215 relevant intervention studies. Each intervention was graded A through D based on strength of evidence. Then, during the pandemic, the writing committee took over.

In the case of bariatric surgery, the evidence group included only observational and case-control studies, “because of ethical considerations and practical challenges to randomization.” The overall body of evidence for bariatric surgery consultation was given a C grade.

“That scares me,” Quatromoni said. “Because that is a very aggressive recommendation that could potentially lead someone to permanent surgical intervention that, for the rest of their lives, has changed the physical anatomy of their GI tract. And I’m talking about someone who may be a teenager, still, when this decision is made for them.” Bariatric procedures reduce the size of the stomach by up to 80% and, in some cases, reroute the digestive tract to make a person eat less.

The weight loss drugs were also backed by less-than-optimal research, Quatromoni said, since most studies have been conducted in adults, and there is no data from long-term research in children. The guideline authors gave the medication recommendation a B grade.

To some, the medications are more familiar terrain, since they have been used to treat other conditions in adults for years. Semaglutide, for instance, was FDA-approved in 2017 under the brand name Ozempic as a type 2 diabetes drug to help people control their blood sugar. But it happened to induce weight loss, so its maker, the Danish pharma company Novo Nordisk, took it back to the FDA as Wegovy, which was approved for treatment of obesity in 2021. Orlistat, another weight loss drug, was approved by the FDA for use in adolescents in 2003. Other medications, such as the diabetes drug metformin, are prescribed off-label for weight loss.

But some people are still skeptical of the drugs, given obesity medication’s checkered past. As a teenager in the 1990s, Aubrey Gordon was prescribed the weight-loss drug fen-phen. Initially hailed as a sort of miracle drug, fen-phen was later pulled from the market when one of its two main ingredients was found to damage major arteries in a rare complication. To Gordon, the feverish enthusiasm around the newer weight loss drugs mirrors the fen-phen fervor. “I did it because a doctor told me it was a safe thing to do,” she said about taking the medication, in a recent episode of the health-myth-busting podcast, “Maintenance Phase,” which Gordon co-hosts.

Part of the struggle is how difficult it is to conduct large, rigorous trials of obesity treatments, experts told STAT. Even the lifestyle interventions, which are used to encourage more healthful behavior, aren’t backed by high-quality proof.

Hampl pointed to a “several-page discussion of the limitations” at the end of the guidelines. The committee’s ultimate focus was on providing as much information as possible for clinicians, despite those limitations.

“Pediatricians or other pediatric primary care providers — because that’s the target audience for the clinical practice guideline — are really encouraged to definitely look at the evidence themselves and decide with their patient and family what is the best course of action,” said Hampl, who is also a professor of pediatrics at the University of Missouri-Kansas City.

Do guidelines stress weight over health?

Making that decision, even alongside clinicians armed with up-to-date information, is easier said than done. Parents can’t be sure that any treatment they ask their children to try will lead to lasting change. Many of the treatments don’t result in permanent weight loss or health improvements.

The approved weight loss drugs seem to help many people lose weight — in part, by helping them feel satiated faster and longer — but only while a person is using them. Studies suggest the drugs don’t permanently alter someone’s metabolism or appetite centers, just as bariatric surgery does not necessarily make a person crave healthier foods. So starting any therapy is a commitment to a lifelong effort.

“Not having a really careful discussion of what that means for a 12-year-old who can’t really think about themselves as a 40-year-old? It gave me pause,” said Tracy Richmond, a pediatrician who directs eating disorder programs at Boston Children’s Hospital.

Richmond is also part of the Strategic Training Initiative for the Prevention of Eating Disorders (STRIPED), which is housed in Harvard’s T.H. Chan School of Public Health, but receives funding from a variety of sources.

Some clinicians said the recommendations failed to clearly explain who the various interventions are appropriate for, especially when it comes to weight loss medications. As written, the guidelines don’t draw clear distinctions between healthy patients with a high BMI, and those who have obesity plus other comorbid conditions or health concerns. “They should have been more direct in who these medications would be appropriate for,” said Siegel, who found the guidelines well-written otherwise.

Hampl said the guidelines were “specific to the extent that the evidence supported it.” One limitation of the evidence, as noted in the document, is the scarcity of studies that report effective treatments for specific populations, she said.

Others said the recommendations place a heavy burden on parents and primary care providers to make an informed call about interventions. “I can tell you about adults who have told me that they’ve basically been coerced into considering bariatric surgery by their doctors,” Quatromoni said. “Everybody wants to believe that every child has educated parents with the resources and the knowledge and the autonomy to make these decisions. And that’s not true.”

How realistic is all this?

But even thinking of patients choosing these paths is jumping ahead. Everything begins with access, and many therapies for obesity are not readily available to patients. For one, the newer weight loss drugs are not covered by most insurance plans, and can cost $1,000 or more per month. There have been supply shortages, and even if there was ample supply, experts say it’s impossible to provide them to all eligible patients without bankrupting the health care system.

Hampl and other guideline authors have consistently pointed in interviews to intensive health behavior and lifestyle treatment as the basis for obesity treatment, as opposed to surgery or medication. But there are few clinics in the country that offer the kind of therapy the guidelines call for. These services are most often found at major hospitals and academic centers, which tend to cost more than non-teaching hospitals. Waitlists for the programs can be months or even years long. In West Virginia, one of the states with the highest prevalence of childhood obesity, Haggerty’s clinic has at least a six-month waitlist. She said they are working on ways to see more patients, including telehealth options.

In Houston, Sharonda Alston Taylor’s clinic at Texas Children’s Hospital is in high demand because it offers the kind of comprehensive obesity care that is nearly impossible to find in other settings. But thorough health care is time-consuming (the AAP recommends at least 26 hours of face time between providers and patients in a year), so clinicians can only see a handful of patients at a time. “You have a high disease burden, a high need for treatment, and a relatively low capacity to be able to provide that,” said Taylor, who is director of the Teens Working on Wellness Adolescent Weight Management Clinic.

It doesn’t help that reimbursement rates for such pediatric obesity treatment are low, if insurance even covers it, several people told STAT. “It’s a little bit of a labor of love, in some ways, in that it’s not a moneymaker for health systems,” said Cambria Garell, an assistant clinical professor of pediatrics at UCLA, and medical director of the Fit for Healthy Weight Program. Often, evidence-based programs are funded by research grants, and may cease to exist once they’ve run out of money.

Medical system barriers are only magnified by the numerous intangible costs patients bear. Consider a parent who’s an hourly employee, and must take time away from work (and lose money) in order to accompany their child to treatment, Taylor said. Or a teen who’s choosing between going to school and going to the doctor.

Such imbalances could actually worsen the stigma of obesity, said Beverly Stiles, a professor of sociology at Midwestern State University Texas who has studied eating disorders and body dissatisfaction among college students. “If we buy into and we believe that this is a medical issue, that should reduce stigma for people who have obesity. But if the cost is so high that you still have people who can’t afford the treatment, then you increase the disparity between the haves and the have-nots.”

Hampl acknowledged to STAT that there is limited access to structured weight management programs. The guidelines “should be a call to action for insurers and others that make policy decisions to start putting resources behind these types of programs,” she said.

While bariatric surgery is usually covered by insurance (unlike drugs and therapy), it often requires multiple evaluations, as well as months of preparation, recovery, and a commitment to changing one’s lifestyle thereafter.

Is there more risk of disordered eating?

The visible changes caused by weight loss can also be accompanied by a profound internal shift — the sometimes-disorienting process of learning a different body, of leading a changed life. It’s the potential consequences of such major bodily transformation that worry Richmond, the Boston Children’s eating disorder specialist. She has seen weight fluctuations evolve into serious and possibly life-threatening eating disorders. She often tells the story of a teenage girl who unintentionally lost weight during the pandemic and, because it garnered compliments, became fearful of gaining the pounds back.

When she thinks of drugs that cause people to lose 15% of their body weight, Richmond wonders, “Is that going to be enough for our adolescent patients, or do they then go into more restrictive and more do-or-die patterns to lose weight?” (Richmond is on the clinical advisory board for Arise, an online platform for eating disorder care.)

And because adolescent bodies are developing, any risk of malnutrition is particularly serious. “I’m as concerned about their bone health as I am about their heart health, and I’m as concerned about their social development,” said Quatromoni, who is a registered dietician. (She is also a media spokesperson on childhood obesity for the American Heart Association and a consultant for an eating disorder clinic in Massachusetts.)

Even the suggestion that someone should look into bariatric surgery or weight loss medication can be stigmatizing, especially if they previously felt neutral or good about their body, experts told STAT. The guideline authors also express concern about eating disorders, noting it’s a particular risk for children and teens who try dieting on their own.

According to the guidelines, studies suggest a person’s participation in structured weight management programs “decreases current and future eating disorder symptoms.” Eating disorder experts disagree on the strength of those claims, and broadly on whether any weight loss treatment can be safely recommended — with no risk of causing disordered eating.

“It is a longstanding tension in our field,” said Christine Peat, director of the National Center of Excellence for Eating Disorders, and a clinical associate professor at the University of North Carolina School of Medicine.

A recent systematic review published in JAMA Pediatrics estimated that 22% of children and adolescents from 16 countries showed disordered eating — slightly lower on the screening scale than diagnosed eating disorders — with the percentages increasing among girls and those with higher BMI.

One problem that all experts can agree on: Clinicians, especially those who work with children, often don’t know how to screen for eating disorders. Medical schools provide scant training on identifying disordered eating.

For more specifics on screening for eating disorders, Hampl and the guidelines point to another document from 2016, “Preventing Obesity and Eating Disorders in Adolescents.” The AAP is also working to update these guidelines and, with the National Eating Disorders Association and the Academy for Eating Disorders, to create more resources.

But how different professional organizations approach topics of obesity and weight loss can vary as greatly as between individual providers. For example, a collaborative of eating disorder organizations released a statement opposing the AAP guidelines and expressing disappointment in groups that praised the recommendations.

Who gets holistic care?

The guidelines on obesity dictate an approach that is something like a utopian vision: many hours, many years, many clinicians and, for most, many interventions. To many providers, that kind of well-rounded care is the dream — not just in obesity medicine, but everywhere — and could be truly beneficial to patients with weight-related issues.

But the reality of the present is more sobering, experts told STAT. It’s not at all clear who will get that holistic care, or how, in a health care system that is so fragile, piecemeal, and inaccessible for many.

“It just feels like this is going to funnel money into an approach that will benefit some. Sure it will,” Richmond said. “And it will benefit people with the best insurance and the best access, and will probably grow the disparity between poor and rich, and white and Black, which will just be a shame when we look back.”

The inverse equity hypothesis posits that new interventions help the rich and powerful first, driving inequity, and only once the upper class has seen improvements will the approaches make it to those who need it most. So far, the trajectory of weight loss drugs has followed that arc, with wealthy adults accessing the medications at the expense of poor and medically vulnerable groups.

The new guidelines, while divisive, pave the way for us to see if the same dynamic will play out among children and adolescents. And eventually, we’ll see if this new, not-quite-consensus strategy will actually help a majority of children struggling with weight-related health issues.

Other parts of this series examine how pharmaceutical makers are promoting a new message about obesity; assess attempts to personalize obesity treatment; and explain the origins of a flawed weight metric, the body mass index. Read more about The Obesity Revolution.

STAT’s coverage of chronic health issues is supported by a grant from Bloomberg Philanthropies. Our financial supporters are not involved in any decisions about our journalism.