New clinical trial design in precision medicine: discovery, development and direction

Peripheral Artery Disease: Leg Pain, Leg Cramps, Lingering Foot Wounds Among Symptoms

Leg pain and leg cramps aren't always an orthopedic issue: Both can be signs of peripheral artery disease, or PAD, a serious blood-flow issue with implications for the heart. In this expert alert, Young Erben, M.D., a vascular surgeon at Mayo Clinic in Jacksonville, Florida, explains how the most common form, PAD that affects the legs and feet, is treated. Options include a surgical technique from the past that Mayo surgeons are reviving and refining to offer new hope to patients with advanced PAD.

In peripheral artery disease, narrowed arteries reduce blood flow to the affected limbs. They do not get enough blood flow to keep up with the demand. It is important to manage PAD as early as possible, Dr. Erben says. In the worst cases, PAD can progress to open sores that do not heal, causing tissue death and limb loss.

Globally, peripheral artery disease tends to be undertreated, even though doctors widely recognize it as a risk factor for heart disease. PAD has become more prevalent in recent years; at least 113 million people worldwide 40 or older have the disease, a 2023 report shows.

"Lower extremity PAD, or PAD in the legs and feet, is a spectrum," Dr. Erben says. "It ranges from people who have leg pain when walking to more advanced cases, where the blood flow to the leg is so impaired that patients are in pain when they're resting or are developing wounds in their toes and feet."

Common symptoms include leg pain or cramps while walking and small sores on the feet that do not heal, Dr. Erben says. Your first inclination might be to think of these as small things to ignore, but it is best to bring up these symptoms with your health care team, she advises.

"Especially if you have diabetes, high blood pressure, high cholesterol or smoke cigarettes and you have these aches and pains, bring it up to your doctor because it may uncover something," Dr. Erben says. "Those little details are how we catch most PAD."

Treatment depends on where someone is on the spectrum. Early on the spectrum, treatment typically includes:

Addressing risk factors for peripheral artery disease such as high blood pressure, high cholesterol, diabetes, obesity and smoking.

Screening for additional blood-flow problems, such as coronary artery disease, may be needed.

Developing a walking program — typically involving time on a treadmill—that the patient can pursue at home or with a physical therapist or trainer.

"Walking develops new collateral blood vessels and increased blood flow to the legs," Dr. Erben explains. "I have seen it with my patients over time: Over three to six months, if they're very diligent about walking, the pain with walking will diminish, and people who are in the very early stages of PAD can almost go back to normal."

People in the middle of the PAD spectrum will have more plaque buildup and blockages in blood vessels in their legs. Medication may be needed to increase blood flow. In some cases, a procedure may be needed, such as the minimally invasive insertion of balloons and/or stents to open arteries; surgery to remove blockages; or bypass surgery, in which a surgeon removes a vein from another area in the body and connects it above and below a blocked artery to improve blood flow, Dr. Erben says.

Blood thinners may be prescribed to help maintain improved circulation.

In the most advanced peripheral artery disease, people may have ulcers in their feet that become infected. The goal then becomes saving the affected limb: Surgeons may perform bypasses and, in some cases, an operation called deep vein arterialization (DVA), in which they connect an artery with a vein to try to provide additional blood flow to help wounds heal.

This procedure was pioneered elsewhere in the 1970s. It lost popularity amid the development of less-invasive techniques such as balloons and stents that could be used earlier in PAD. Vascular surgeons at Mayo Clinic are now reviving and refining it, Dr. Erben says.

"It is considered an innovation, but it is one of those that was an old technique, then somehow forgotten, and now it has been resurrected. We started doing this roughly three years ago for patients whose limbs are threatened in the last stage of PAD and we are having success."

In very advanced cases of peripheral artery disease, treatment may require amputation of the affected limb, such as toes or the leg below or above the knee.

The worst-case scenarios with advanced PAD and the success often seen when the disease is recognized and managed early, are why it's important to tell your doctor if you start experiencing recurring leg cramps, also known as charley horses; leg pain that starts with exercise and ends with rest or that doesn't go away; or a foot sore, even a small one, that lingers, Dr. Erben says.

"The mild symptoms are the ones that people tend to ignore," Dr. Erben says. "Unfortunately, they often do not realize that they have a problem until it becomes a dire problem. The most important message that I can give to patients is that you may think it's a little complaint, but please bring it up to your doctor. Because it may uncover something that you never thought of."

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We Know Scented Pads And Tampons Aren't Good For Vaginas. So Why Do Brands Still Offer Them?

Nine years before Courteney Cox became a household name for her beloved Friends character Monica Geller, she was famous for something else: She was the first person to ever use the word "period" during a Tampax commercial in 1985. "Tampax tampons protect differently than a pad, so you feel cleaner—and feeling cleaner is more comfortable," a leotard-clad Cox said.

The idea that periods are "unclean" was baked right in. Like a lot of products marketed directly to women, that ad (and plenty that came before it) sold tampons under the societal guise of empowerment and taking charge of your body. But what seems to be implied with this messaging is that "your vagina is stinky, it's dirty, and your period is gross—so buy these products to hide the smell," Nadya Okamoto, author of Period Power and founder of the menstrual product brand August, tells SELF.

Even today, when she does first-period workshops with young folks, lots of them tell her they're "terrified that other people can smell their period on them," she says. "There's so much paranoia and shame." But as any ob-gyn will tell you, it's normal for your vagina to have some kind of smell. "The vagina isn't supposed to smell like a bed of roses," TraShawn Thornton-Davis, MD, an ob-gyn at Kaiser Permanente in the Washington, DC, area, tells SELF. "The vagina cleans itself, so you don't need products or perfumes to cover an odor."

And despite the promises of scented pads and tampons, we know they generally aren't great for us for a host of reasons. For instance, any fragranced period product can potentially mess with your vaginal pH (a measure of how acidic it is), disrupting the delicate balance of bacteria that keep you healthy down there, Heather Bartos, MD, a gynecologist in Frisco, Texas, tells SELF. "pH is the normal milieu, essentially the bacterial playground, of the vagina, and it is usually kept in check by a balance of different microbes, like bacteria and yeast," Dr. Bartos says. "It's very delicate and can get thrown off course very easily." And when that pH is out of whack, this environment can set the stage for bacterial vaginosis, yeast infections, and even trichomoniasis, among a slew of other issues. The American College of Obstetricians and Gynecologists specifically advises against using menstrual products that "contain a deodorant or a plastic coating" to prevent vaginitis, an umbrella term for conditions that can cause vaginal inflammation or infections.

So why do some brands continue to offer scented menstrual products when it's clear they can be stigmatizing and bad for you? We decided to ask the various companies that still make them.

Unpacking the odor narrative

There's a major reason some period-care companies are still selling scented menstrual products: We keep buying them—in part, because a lot of us still believe we might need them.

Take an experience I had in college: One of the boys at my school was recounting a date when he said, "Her vagina smells like Doritos." The comment was dripping with misogyny, yet it immediately stirred the most self-critical voices in my head. Could a man be out there comparing my vagina's scent with that of a cheesy chip? It's been many years since this incident, but I still remember how it immediately sparked self-consciousness within me.

This wasn't a new idea 10 years ago: There's a centuries-long sexist and racist history around vaginal odor, Ami Zota, ScD, an associate professor of environmental health sciences at Columbia University Mailman School of Public Health, tells SELF. Research shows Black people have been disproportionately targeted by ads for products that make promises about alleviating vaginal odors, Dr. Zota adds. This group is also more likely to use scented or scent-altering intimate care or menstrual products, Elissia Franklin, PhD, an analytical chemist at Silent Spring Institute who studies chemical exposures from consumer products, tells SELF. What's more, studies have shown that women with less education, regardless of race or ethnicity, are more likely to use multiple scent-altering menstrual products compared to those with more formal education.

Scented pad and tampon makers are aware of our potential insecurities. "We know that odor control is a strong driver for women, so it's important we provide that benefit to them with our products," Mariela Biber, the research and development director at Edgewell Personal Care, the parent company for Playtex, Carefree, and o.B., tells SELF. (A spokesperson from Proctor & Gamble, the parent company of Tampax, did not respond with comments for this story prior to publication.)

"They're really looking for products that offer that freshness and give them the confidence and peace of mind that they don't have to worry about it," Biber adds. (Again, this notion of "freshness" is problematic, given that fragrance in or around your vagina can contribute to changes that may lead to irritation and infections, Dr. Thornton-Davis says.)

Giovanna Alfieri, the vice president of marketing at Honey Pot, tells SELF the company's position is that natural odor isn't a bad thing: "Vaginas do not have to smell any sort of way—that, to us, is a huge brand tenet," she says. Alfieri says she views scented tampons, in particular, as "unnecessary" and cautions against putting anything fragranced inside of your vagina (it's also worth noting that Honey Pot does not sell scented tampons). But the company's "herbal" pads do contain essential oils. In response SELF asked, Why have that option at all? "It's a meaningful question," Alfieri says. She acknowledges that there's "most certainly" demand for a scented product. "If you looked at our competition, obviously it suggests there's willingness," she says. "We've been really focused on them not being fragrances but being essential oils." She also says "because they are cosmetic products, there is no residual scent profile."

But Dr. Franklin notes that essential oils can have "fragrant properties," albeit "natural" ones, and they can still potentially trigger similar skin sensitivities, like irritation. "I would steer clear of essential oils, fragrances, or anything that's covering up the natural odor of the vagina," Dr. Thornton-Davis advises. (Spokespeople for Honey Pot declined to comment further on Dr. Franklin and Dr. Thorton-Davis's insights.)

Changing attitudes, same old stigma

Period-product marketing doesn't highlight odor quite like it used to. That is, in part, due to state legislation that forced companies to disclose what's in their menstrual products, says Alexandra Scranton, director of science and research for Women's Voices for the Earth (WVE), a nonprofit that aims to reduce the use of harmful chemicals in women's health care and cosmetic products.

The FDA regulates pads and tampons as class I or II medical devices, and there's no general law requiring ingredient disclosure for products in those categories, unlike food or cosmetics, Scranton explains. But a shift took place in October 2021, when a New York State law spotlighting pads, tampons, menstrual cups, and period underwear went into effect; it called for "a plain and conspicuous printed list of all ingredients which shall be listed in order of predominance" printed on or attached to the packaging. While it didn't hit the federal level, the law had a "national impact," marking a significant move toward transparency in the US, per a 2022 WVE report investigating the ingredients disclosed on menstrual products.

Even before then, though, the tide was starting to turn. For instance, Playtex phased out its scented Fresh Balance tampons in 2020. Nicole M. Harris, the head of marketing at Edgewell Personal Care, tells SELF that while there's still some demand for scented products, a lot of consumers have more nuanced views on fragrance: "Scent is, by and large, not something that women want to associate with products that are going in an intimate part," she says. "So they want to take care of the odor but not through means of a perfume or an added fragrance…. Added fragrance in feminine care products is not widely available or a growing space. If anything, it's going the other direction."

Biber agrees: "Everyone's trending towards a 'less is more' approach."

In fact, in November 2021, the official Tampax brand account wrote in response to a tweet, "As of Spring 2021, we said goodbye to scented tampons and we no longer manufacture products that contain fragrance in the U.S.!" But while the brand's Pearl Super Scented tampons are no longer available on the Tampax website, they are available in what appears to be the official Tampax store on Amazon US, as well as Kroger.Com and Walmart.Com. And P&G offers Always scented pads, which are currently available on its website. (A spokesperson from Proctor & Gamble, the parent company of Tampax, confirmed receipt of SELF's detailed list of questions, including a question about whether or not Tampax still manufactures and/or sells scented period products in the US, but did not respond prior to publication.)

Around the same time Playtex stopped manufacturing its Fresh Balance tampons, it launched a line of products branded as "Odor Shield," which claims to have "2X more odor protection" on its packaging. It isn't branded as a scented product but rather "an odor neutralizer," Biber says. Similarly, she notes that certain Carefree pads also have "odor control" technology. "They're unscented," she says, "but to get at that odor control, if you were to open up the product, there would be a scent associated with that odor neutralizer."

If you're confused by this, that's because it is confusing. The gist: Just because a product, including pads or tampons, is labeled "unscented" doesn't necessarily mean it's also "fragrance-free," unless otherwise specified. To be truly fragrance-free, a product shouldn't contain any fragranced materials or "masking scents" at all. As for the "unscented" label? That "means it doesn't smell like anything; it doesn't mean there's no masking ingredient," Ginger King, MBA, a cosmetic chemist based in New Jersey, tells SELF. "If there's a bad odor, you can use a [masking] ingredient to cover it so you don't smell anything. It doesn't mean it's not fragranced." Various chemicals have functions that aren't necessarily "adding" scent to a product, she explains, but rather making one last or simply covering it up.

Although Playtex declined to comment directly to questions about this, a spokesperson noted that the brand "discloses odor-control ingredients for the products that contain them," adding, "The safety and quality of all our products have been evaluated and tested by independent third-party laboratories and are shown to be fully compliant with standards and requirements of the FDA."

Playtex's call-out of these ingredients at all is a step in the right direction—the WVE report noted it as a brand with "helpful ingredient disclosure features," specifically highlighting it as a good thing that they give their consumers this information.

Will scented period products ever go away entirely?

A lot of this news—well, it stinks. But many people are working to upend the stigma around periods and odor, hoping to ban scented menstrual products entirely.

Some brands still sell scented tampons, but you may have to go looking for them—which is a good thing, Scranton says: "We were pleased to see in our research that there were a lot fewer scented tampons than there used to be," including not just in the offerings from big-name brands, but also less recognizable ones sold in dollar stores. But "the fragrance thing is holding on," particularly with scented pads, she stresses. "There's still this mentality of, Oh, I definitely need a scented pad—otherwise, someone is going to know that I'm on my period."

A greater push to change these dynamics might be coming, though. Laura Strausfeld, the executive director of Period Law, a legal advocacy group pushing for safe, freely accessible period products, and her team want the FDA to regulate menstrual products as class III medical devices. (To give you a better picture of this system, bandages are in class I, daily contact lenses are in class II, and breast implants are in class III). Strausfeld says the classification change "would shift the burden [of making menstrual products safer] to companies, which would have to test more rigorously and over a longer period of time."

Meanwhile, a recent State Senate bill in New York seeks to ban "certain restricted substances," including but not limited to fragrances, colorants, dyes, and preservatives "intentionally added for the presentation" of menstrual products—which, if passed, could spell the actual end to scented pads and tampons. So far it has passed the State Senate but not the assembly; sponsors plan to revive the bill when the assembly reconvenes in 2025.

Scranton suggests limiting your exposure to fragranced period products by simply not buying them. And, again, Dr. Thornton-Davis emphasizes that it's normal for your vagina to have a "baseline smell" (though, if you take a whiff and detect something very different from your usual, it's worth talking to your ob-gyn, especially if the odor is accompanied by changes in your vaginal discharge). The point is, your doctor can help you a lot more than some perfume-y pad.

When buying period products, Dr. Bartos says "plain Jane is best" are the words to live by, and Dr. Thornton-Davis echoes this sentiment: "You want to keep things as plain as possible."

The truth is, the more we turn up our noses at these "odor"-targeting products, the fewer of them companies are likely to make. Your period and its scent? It's all-natural. Your vagina does not smell like flowers—and it's not meant to. Especially not because of a tampon.

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Pediatricians' Obesity Guidelines Rest On Shaky Evidence About Eating Disorder Risks

To address soaring rates of childhood obesity, the American Academy of Pediatrics last year endorsed tactics it once considered risky. 

"Watchful waiting" had been standard practice, in part from concern that a doctor's focus on weight could inadvertently plant the seed for stigma or eating disorders like anorexia and bulimia. 

The influential academy now said pediatricians should pursue "early treatment at the highest level of intensity appropriate for and available to the child." Some teenagers should undergo bariatric surgery. Others should inject the obesity drug Wegovy. Some children as young as 2 should undergo intensive behavioral treatment. 

The AAP cited three academic papers to support its conclusion that aggressive obesity treatments would not fuel disordered eating, saying the literature clearly "refutes this relationship." But in interviews with STAT and the Investigative Reporting Program at UC Berkeley's Graduate School of Journalism, authors of each paper said the pediatric group misconstrued or misused their work. In particular, the authors took aim at the AAP's claim that eating disorders would be reduced for up to six years after obesity treatment. 

The issue is pivotal because pediatricians are also scrambling to contain skyrocketing rates of eating disorders in young people. Eating disorders, which often take years to recover from and can be fatal, now rival asthma as the second most common chronic condition in U.S. Children — behind obesity. 

One of the three studies cited by the AAP was conducted by Australian scientists, including Megan Gow, a researcher at the University of Sydney, Australia. But Gow said the AAP had "cited the wrong paper." She thought the academy intended to cite another paper of hers, but that one also lacked any assurance that obesity treatment would reduce eating disorders long-term. 

An author of the second paper, University of Buffalo professor Katherine Balantekin, said she was only familiar with limited data indicating that the risk of eating disorders may be reduced in the short term. "All of our data that I'm familiar with don't go out to six years, so I'm trying to think of what they would have used," she said. 

Heather Forkey, a pediatrics professor at the University of Massachusetts, authored the third paper, a report on treating patients with trauma. She said inclusion of her work must have been a "typo" because it didn't discuss eating disorders. "I am not sure that I know why we were quoted," she said. 

The guidelines' lead author, Sarah Hampl, director of the Center for Children's Healthy Lifestyles and Nutrition at Children's Mercy in Kansas City, Mo., has defended the new recommendations against criticisms by eating disorder experts. Hampl acknowledged that evidence scrutinizing the long-term relationship between obesity treatment and eating disorders was thin — calling it "a gap in the literature." She added, "A lot of studies did not report eating disorders or disordered eating outcomes."

But she said the AAP remained confident in the recommendations' safety because, in addition to the research, the guidelines "underwent extensive review by numerous committees and councils within the AAP," including experts on eating disorders and obesity.

The AAP has also formed a work group of eating disorder experts to contextualize the guidelines with education to help doctors and parents guard against eating disorders while still adhering to the aggressive approach to obesity. 

One work group participant, Christine Peat, a nationally recognized eating disorder expert at the University of North Carolina, called the work productive. She recognizes the challenge of revising published guidelines, yet she said, "The eating disorder provider in me says, 'Yes, absolutely, they should walk back from the guidelines.'" Such worries, she said, remain "fairly uniform" among eating disorder specialists. 

"There is a real risk that some of these kids may be inadvertently sort of set up for an eating disorder," Peat said. 

Following interviews about the errors uncovered by the reporting for this article, the AAP updated its recommendations, replacing one of the three cited papers with a new one. 

The new paper, which analyzed the long-term effects of obesity treatment, included just two studies that followed children for at least four years. Both were conducted decades ago in Belgium and attempted to ascertain whether pediatric obesity treatment can trigger eating disorders. But the results were mixed. The studies had small sample sizes, lost track of half the patients or more and had no control groups to determine whether the changes in eating were related to the obesity treatment the children underwent. 

One of the lead researchers, Lien Goossens, said her findings "cannot really be generalized to all overweight youth." 

Moreover, Goossens' study was conducted before most doctors understood that an especially dangerous eating disorder, anorexia, can develop in larger-bodied children as well as those who appear underweight. 

Joslyn Smith, a 45-year-old resident of Ithaca, New York, recalls developing anorexia in her adolescence, shortly after a doctor instructed her to lose weight. The AAP's new obesity guidelines alarm her. "I have no doubt that people are going to die because of this," she said.

No risk-free solutions 

The 2023 guidelines were the first time in 15 years the AAP overhauled its recommendations on childhood obesity, as it noted a major shift in the size of American youth. One out of five children in the United States is classified as having obesity today — quadruple the rate in the 1970s. 

This coincides with a rise in children with conditions correlated with obesity including hypertension, diabetes and fatty liver disease. Before the 1990s, type 2 diabetes was rare in children. The Centers for Disease Control and Prevention estimated that 5,000 children and adolescents are now diagnosed with it annually. Fatty liver disease, once virtually undetected in children, now afflicts approximately 5 percent to 10 percent of children. 

Smith on her fourth birthday. Courtesy Joslyn Smith

Given these risks, some experts thought the issue of eating disorders was delaying necessary action. "I'm not going to stop the war on obesity since I worry I might trigger some increase in eating disorders," said Arthur Caplan, a bioethicist at New York University who believes the known risks of obesity outweigh the potential risks of eating disorders.

When the AAP's overhaul emerged, Gitanjali Srivastava, an obesity specialist at Vanderbilt University, said it was "very long overdue." She said the guidelines "do not promote eating disorders, but rather they encourage us providers to really properly assess and evaluate patients that are presenting for disordered eating."

The Food and Drug Administration helped pave the way for the AAP's aggressive approach by approving Wegovy in 2022 to treat pediatric obesity, based on a small clinical trial showing that most adolescents taking the drug lost at least 5 percent of their body weight after 68 weeks. The trial was funded by Novo Nordisk, Wegovy's manufacturer. 

Intensive behavioral counseling was also buttressed by the recent endorsement from a powerful federal advisory board, the U.S. Preventive Services Task Force. The task force didn't recommend weight loss drugs for children and said the evidence to support their use was "inadequate." Most studies lasted two months or less and did not examine long-term effects. (A new trial found that children ages 6 to 12 taking a GLP-1 experienced modest body mass index reduction. Yet some experts raised concerns about the dearth of long-term data, especially for growing bodies.)

Many others have called for more action to guard against eating disorders, which are especially prevalent and often unrecognized among children and young adults with obesity. 

Leslie Sim, a psychologist specializing in eating disorders at Mayo Clinic, said some of her larger-bodied anorexia patients said their eating disorders began when doctors told them "their weight has tracked too high." 

Sim said patients can interpret this as, "The doctor told me that I'm fat," or "I'm doing something wrong." Even when they received nuanced messaging about healthy habits, emphasis on weight can lead children to resort to starvation, Sim said. 

Cheri Levinson, director of University of Louisville's eating disorder lab, said "many of our kids and adolescent patients have come to us after developing an eating disorder because of an appointment with a pediatrician." 

The AAP knows that any conversation with kids about weight is risky. 

In a 2016 publication, the organization said: "At first, weight loss is praised and reinforced" but extended attention to weight "can lead to social isolation, irritability, difficulty concentrating, profound fear of gaining the lost weight back, and body image distortion." 

When the new obesity guidelines emerged in January 2023, the AAP said that any risk of doctors' sparking eating disorders can be mitigated through screening. However, interviews with directors of obesity treatment centers — including those cited by the AAP as national models — showed that some do not screen for eating disorders and have little training to handle risks. "There's not a specific training or tool within this program," said Kate Heelan, creator of Building Healthy Families, a weight management program in Nebraska listed on the AAP's website. 

Topic 1 for 14,000 conference goers

The national conversation around children's weight and health tends to focus on obesity rather than eating disorders. Federal funding reflects this imbalance: in 2023, the National Institutes of Health allocated nearly $1.2 billion to obesity and only $55 million to eating disorders. 

At the AAP's national conference last October, attention to the two issues was also lopsided. The new obesity guidelines drew much attention from the more than 14,000 attendees who descended on a convention center in Washington, D.C. 

Pediatricians crowded into a room for a full-day workshop on how to use GLP-1s, a class of weight loss drugs including Wegovy. The AAP recommends that physicians discuss the injectables, or alternatives, with all children 12 and older identified as having obesity. 

One speaker called GLP-1 drugs "transformational, akin to penicillin." 

Some pediatricians attending the conference said that for decades, treating obesity was hopeless and thought the new approach could be a gamechanger. 

Throughout the convention, signs identified the AAP's major donors, including Novo Nordisk. The founding sponsor of the AAP's initiative on childhood weight is Nestlé, currently designing a line of food to be used with GLP-1s. 

In a written statement after the event, the AAP said that neither company inappropriately influenced the obesity guidelines nor the conference content. 

Many speakers focused on obesity and presented the guidelines with enthusiasm, yet dangers of the medications still emerged. GLP-1s can cause rapid weight loss, often 10 percent to 20 percent of body weight. Some presenters noted that this makes it nearly impossible to differentiate medication-driven weight loss from an eating disorder. If doctors aren't looking for eating disorders, they won't find them, the panelists said. 

Some weight loss drugs can disguise eating disorder symptoms, the presenters said. For instance, one drug combination the AAP recommends, phentermine and topiramate, can cause hypertension, masking a low heart rate and blood pressure, signs of a possible eating disorder. 

Bariatric surgery, recommended by the AAP for children 13 and above with severe obesity, also gave some pediatricians pause. A 2019 literature review found that a notable share of candidates for bariatric surgery had binge eating disorder. Recovery from the procedure requires constant attention to diet, which can exacerbate eating disorders. 

The lifestyle treatment the AAP recommends for high-weight children 2 and up also raised concerns. In some programs, children step on the scale weekly, complete detailed food logs, and follow the "traffic light diet," which categories food into "always," "sometimes" and "rarely" groups, behaviors that some research links to eating disorders. Some programs monitor children's activity with step trackers and reward them with raffle tickets when they avoid gaining weight, a focus on size and exercise that some clinicians fear will drive eating disorders. 

But these worries were easy to overlook: Twenty-three presenters focused on obesity; four spoke on eating disorders. 

Cynthia Bulik, a University of North Carolina professor of eating disorders who did not attend the conference, said professionals combating obesity and eating disorders are siloed. 

"The biggest problem is that these two fields don't communicate," Bulik said. "I think we almost live in separate worlds." 

Less visible anorexia, still dangerous

The studies that best support the AAP's claim that obesity treatment reduces eating disorders occurred two decades ago in Belgium. They analyzed very different treatment approaches from those the AAP recommends today. 

Lien Goossens, one of the Belgian researchers, studied an inpatient obesity clinic, Zeepreventorium, on the nation's coast. Apart from weekends at home, the children lived for 10 months at the treatment center and received near-constant support during meals, exercise and group therapy, a much higher level of care than the outpatient programs the AAP recommends.

A second Belgian study followed an outpatient cohort of 136 children. In interviews, its authors expressed guarded optimism about the behavioral treatments they studied but said the U.S. Is implementing a different approach with less psychological support. 

When the researchers conducted their work, many assumed larger-bodied people couldn't starve themselves. "Anorexia nervosa is not something we would expect to find there, of course," Goossens said. 

It was only in 2013, well after the Belgian work, that the Diagnostic and Statistical Manual of Mental Health Disorders recognized "atypical anorexia" as an eating disorder. Patients with the condition have all the symptoms of typical anorexia except that they are at a weight considered normal or high. Goossens added that, if conducting a study today, researchers should look for other treatment effects, such as depression, low self-esteem and all eating disorders, including atypical anorexia.

Smith in college: At times she ate so little a clinician found she was severely malnourished. She credits an eating disorder treatment center with saving her life. Courtesy Joslyn Smith

These patients often obsess over caloric restriction and strive for weight loss. They may fast for long stretches, adhering to strict rules for when certain foods can be consumed. They often suffer heart and gastrointestinal issues, weakened bones, depression and suicidal thoughts. Children may also experience stunted growth, impaired cognition and delayed puberty. 

Anorexia, in both the typical and atypical form, is one of the deadliest mental health disorders. One out of 20 die within four years of diagnosis. 

Research by University of Denver professor Erin Harrop shows that the atypical disorder happens at least as frequently as the typical form better understood by the general public and physicians. At some treatment centers, atypical anorexia patients represent half those hospitalized for eating disorders. 

Still, some data show that high-weight patients wait nearly nine months longer to receive eating disorder diagnoses than patients who are not high-weight. When high-weight patients do seek help, they may face skepticism and disbelief that they are sick. They must confront treatment centers overwhelmed by the crush of cases, which have doubled among adolescents since 2020 and have not returned to baseline. 

When Joslyn Smith, of Ithaca, New York, was 15 years old, she saw a doctor for neck pain near her Arkansas hometown. She recalled that the doctor poked at her upper spine and told her it curved into a "buffalo hump," a pad of fat between the shoulders.

Smith and her mother, Susan Yager, said the doctor prescribed a restrictive meal plan requiring her to vigilantly monitor calories and eliminate sugar. She strictly followed the advice. "Coming from a medical professional, it felt really legitimate and credible," she said. At a follow-up visit several weeks later, she stepped on the scale, elated that 10 pounds had vanished. 

But as quickly as the weight came off, it reappeared, plus several pounds. The cycle continued for years in a pattern that research shows is common. 

In college Smith reached her heaviest, close to 300 pounds. She doubled down on her doctor's approach to weight loss, eating small portions or nothing at all. She purged, over-exercised and ate laxatives, dropping over a third of her weight in a year. Her doctor's growth chart still said she was overweight, though she was severely malnourished, according to one of her clinicians, Carolyn Chaffee. 

Smith passed out on campus multiple times and developed an irregular heartbeat and a dangerously slow pulse. Her potassium levels sank so low that she risked cardiac arrest. Still, she thought she was following her doctor's advice, his words in a loop in her brain. 

At age 22, Smith visited her mom in Arizona. For days, she barely ate and swallowed laxatives. One Sunday at the end of the trip, severely depressed, she attempted suicide. 

An eating disorder treatment center saved her life, and in 2002, Smith began talking publicly about her experience. For years, people told her she was an anomaly. "You can't weigh 250 pounds and have anorexia," she remembers hearing. Smith has worked for decades to show that she is not an exception. She has taken on policy roles for the American Psychological Association and National Eating Disorders Association to expand diagnosis and recognition of all eating disorders in high-weight people.

Now, 30 years after that doctor's appointment, Smith worries that the guidelines put millions of children at risk of repeating her experience.

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.

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