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Lifesaving or stigmatizing? Parents wrestle with obesity treatment options for kids

Janice Chang for NPR

Two mothers — Jen McLellan in Albuquerque, N.M., and Grace, of Bethesda, Md. — haven't met, but they share a common childhood trauma: Both came of age in the 1980s and '90s feeling burdened by shame and stigma over their body size. Both tried every known diet plan and pill available at the time, only to have doctor after doctor admonish them to restrict calories and exercise still more.

Since then, scientific understanding of obesity has transformed; doctors now consider it a disease driven by genetics, the brain and other organs, as well as by environmental or psychosocial factors. Studies have also confirmed what both women suspected all along: Diets usually do not result in long-term weight loss because food and exercise account for only some part of the puzzle.

Both women felt duped and overlooked by doctors who — mistakenly, it turns out — viewed obesity as a lack of willpower.

Now, each of these mothers has a 12-year-old child confronting social issues related to weight, and both strongly wish to help their own children tread healthier paths.

"It is trauma, because we've seen what has happened to ourselves," says McLellan, a childbirth educator specializing in helping plus-size mothers. "All I've ever known was dieting and the harm I had done to my body."

Grace, a software engineer who wishes to use only her middle name to protect her daughter's privacy, says the feeling that obesity was a personal failure isolated her as a child. "I didn't have a lot of friends all the way through middle school, even high school," she says.

Today, there are treatments for kids with severe obesity that weren't available to Grace and McLellan growing up. New drugs like semaglutide — approved for weight loss under the brand Wegovy — tamp down hunger and boost metabolism; adolescent bariatric surgery achieves similar results.

Both treatments were added early this year to the American Academy of Pediatrics' recommended treatment guidelines for children as young as 12 or 13 — acknowledging the increasing threat of the disease in children. Those guidelines help direct pediatricians in their treatment recommendations, which can, in turn, affect the likelihood that a patient might get diagnosed, get treated or get their care paid for by insurance.

The new AAP guidelines — as well as the rising awareness of the new class of effective weight-loss drugs — have touched off controversy among many parents who are now debating whether, when and how to treat a child's obesity.

Like many parents, Grace and McLellan have divergent views about the issue.

Seeking to spare kids from stigma

Grace's eldest daughter had been active in sports, but around age 8 — with no changes in how she'd been eating — she started rapidly and inexplicably gaining weight, as Grace herself had. Her increasing size and decreasing mobility started affecting her moods and caused distress.

I'm really hopeful for her, that she can avoid all of the problems I had with my weight and struggled [with] my entire life.

So Grace fought to get her middle-schooler on the new obesity drugs. Because no pediatric obesity specialists were available, she enlisted help from a medical researcher who diagnosed her daughter with a rare genetic disorder, PCSK1 deficiency, that causes rapid weight gain. (As it turns out, Grace was later diagnosed with this condition as well.)

Then Grace battled through insurance appeals and other paperwork to get a costly treatment for her daughter paid for by her health insurance. The drug is approved only for those with weight gain related to a handful of rare genetic conditions.

For the past year, her daughter has gotten a refrigerated shot of medication in the arm every morning before school. Her mother says that the medication has trimmed her weight gain. Plus, just knowing obesity is a treatable disease and not her fault has lifted the girl's spirits.

"I think that will enable her to grow into a much more healthy person all around, psychologically, socially," Grace says.

Grace wanted to intervene with treatment before her daughter developed any ailments tied to obesity, such as diabetes or joint or liver problems. She hopes the new guidelines will make it easier for other children like hers to get treatment and insurance coverage, noting how current barriers to care and treatment are insurmountably high for most families.

"I'm really hopeful for her, that she can avoid all of the problems I had with my weight and struggled [with] my entire life," Grace says.

Making a lifelong decision for your child

As an adult, Jen McLellan spends a lot of time pushing back against the stigma and medical discrimination that she says she experienced throughout her life. She's concerned about her son being exposed to weight bias in many forms, and she teaches him to accept and embrace all body types.

Yet she says he still makes occasional comments about tying his sweatshirt around his belly to make it appear smaller.

Are we saying that our children need to be on this medication for the rest of their lives?

McLellan says doctors often push diets and drugs to achieve cosmetic fixes, not to solve actual medical problems — she herself didn't face health issues related to her obesity. So to her, the newer advanced treatment options for children sound familiar and dangerous.

She doesn't trust that these new drugs endorsed by the medical establishment — which mostly act on the brain's regulation of appetite — won't later prove as harmful as various older drugs doctors prescribed her in the past. That included metformin, which reduces sugar absorption but gave her constant diarrhea. "The minute I got off of them, I just gained everything back — plus," McLellan says.

She's incredulous doctors would recommend open-ended use of new medications for young patients: "Are we saying that our children need to be on this medication for the rest of their lives?"

More "horrifying" and extreme, she finds, is the prospect of bariatric surgery on a child who hasn't yet gone through puberty.

Pushing back against moral assumptions

Treating obesity in children is an extremely touchy topic fraught with stigma and sensitivities, and there is no easy or risk-free solution. Parents' dilemmas are made more challenging because obesity medicine is still rapidly evolving. There is no data, for example, on the long-term effects on adolescents of the newly approved medications. The new medications, including Ozempic, were originally developed to treat diabetes and have only recently been approved for weight loss under the brand Wegovy.

Bariatric surgery's track record in teens is longer and has proved effective, though it comes with some risk of complications, malnutrition and weight regain. Either way, neither medication nor surgery is a quick fix, and both are expensive and require serious commitment to big lifestyle changes in nutrition and activity in order to work.

But forgoing treatment — "watchful waiting," as the previous pediatric guidelines advised — is not an option for kids facing potentially lethal medical consequences. The most recent data available, from 2018, shows that nearly 20% of kids have obesity, including 6.1% who have severe obesity.

"Some of these kids are having very serious complications that are life-limiting, that are happening to them right now," says Sarah Hampl, a pediatrician with Children's Mercy in Kansas City, Mo., who co-authored this year's new AAP guidelines. The document runs more than 70 pages and strongly emphasizes the importance of family lifestyle changes to ensure nutrition, exercise, sleep and stress management, Hampl says, but it also recognizes today's realities: "We need to take more urgent action."

Treatment, Hampl argues, doesn't just improve physical disease; it can also help address some of the related mental health complications that often accompany obesity. Obesity is uniquely cruel in its stigma. Larger kids are frequently bullied or feel left out of sports or other activities because of their body size.

[Parents have] been taught that you do this the right way, and the right way is diet and exercise.

To Faith Anne Heeren, that's an argument in favor of treatment. Heeren, 25, had developed prediabetes and high blood pressure before undergoing bariatric surgery in high school.

"I think it has the potential to relieve so much internalized stigma that has been building up for so many years," says Heeren, who is now a Ph.D. candidate in obesity research at the University of Florida.

As a child, Heeren says, she was quiet and shy, and she thought that this was her innate personality, only to find surgery changed that too. "I got more vocal and opinionated and loud after I lost weight, and I think it's because I gained a lot of confidence and felt comfortable in my body and didn't feel like I needed to hide," she says.

Are those other nonmedical factors reason enough to treat a child's obesity?

Dr. Fatima Cody Stanford argues it can be.

"Obesity in and of itself is a disease," says Stanford, a Harvard Medical School obesity specialist. "If we recognize obesity as the chronic disease that it is, then we have to treat that disease, not just as an impact on other diseases."

Two views of how to combat stigma

But that's a difficult concept for many parents to grasp, because weight and body size come with so many moral assumptions, unlike treating cancer, Stanford says. Parents and teenagers are often reluctant to use medication or surgery because they see it as an admission of their own failure, even when told that obesity's origins are complex and often hereditary.

"They've been taught that you do this the right way, and the right way is diet and exercise — that's more of what I hear," Stanford says.

Similarly, factoring a child's mental health into the child's treatment — problems with bullying, for example — can also be a divisive issue for parents, especially if medical problems haven't yet manifested.

We shouldn't be changing [kids'] bodies because of bullying so they fit a mold that is acceptable by society.

Jen McLellan, the Albuquerque mother, says endorsing treatments that reduce body size makes weight stigma worse. She thinks parents instead should model acceptance of different body sizes, rather than urging kids to conform to a smaller ideal. "We shouldn't be changing their bodies because of bullying so they fit a mold that is acceptable by society," she says.

Many advocates in the growing fat acceptance movement share McLellan's point of view. For instance, the Association for Size Diversity and Health issued a statement condemning the AAP's treatment guidelines, writing that they "worsen medical fatphobia and ultimately degrade the quality of healthcare" for kids.

But for Grace, she says she couldn't bear the thought of her daughter reliving her own childhood anguish, living a life marginalized because of her body. "I just remember all of that sadness and isolation, and I wish I could go back in time and help that kid," Grace says.

So when Grace's daughter asked for help with her body weight, Grace dedicated herself to the task. These are tough decisions that come down to so many different and highly personal factors, Grace says, but she's grateful there are new options to consider.

And she feels validated in her decision to pursue treatment, because of the improvements she sees in her daughter's emotional health.

"She has more friends, she's doing better in school and she's really expressing herself and her uniqueness and her individuality a lot more," Grace says.

If anything, she says, the changes have reduced weight stigma for her daughter and made her more accepting. "I think it's also given her a lot of empathy for people who are different," Grace says.

Editing by Carmel Wroth. Art production by Meredith Rizzo.

Copyright 2023 NPR. To see more, visit https://www.npr.org.

Yuki Noguchi is a correspondent on the Science Desk based out of NPR's headquarters in Washington, D.C. She started covering consumer health in the midst of the pandemic, reporting on everything from vaccination and racial inequities in access to health, to cancer care, obesity and mental health.