Suzette Zuena is her own best advertisement for weight loss.

Zuena, the “founder/visionary” of LH Spa & Rejuvenation in Livingston and Madison, New Jersey, has dropped 30 pounds. Her husband has lost 42 pounds.

“We go out a lot,” Zuena said of the pair’s social routine. “People saw us basically shrinking.” They would ask how the couple did it. Her response: Point people to her spa and a relatively new type of medication — GLP-1 agonists, a class of drug that’s become a weight loss phenomenon.

But she’s not just spreading her message in person. She’s also doing it on Instagram. And she’s not alone. A chorus of voices is singing these drugs’ praises. Last summer, investment bank Morgan Stanley found mentions of one of these drugs on TikTok had tripled. People are streaming into doctors’ office to inquire about what they’ve heard are miracle drugs.

What these patients have heard, doctors said, is nonstop hype, even misinformation, from social media influencers. “I’ll catch people asking for the skinny pen, the weight loss shot, or Ozempic,” said Priya Jaisinghani, an endocrinologist and clinical assistant professor at New York University’s Grossman School of Medicine.

Competition to claim a market that could be worth $100 billion a year for drugmakers alone has triggered a wave of advertising that has provoked the concern of regulators and doctors worldwide. But their tools for curbing the ads that go too far are limited — especially when it comes to social media. Regulatory systems are most interested in pharma’s claims, not necessarily those of doctors or their enthused patients.

Few drugs of this type are approved by the FDA for weight loss — they include Novo Nordisk’s Wegovy. But after shortages made that treatment harder to get, patients turned to other pharmaceuticals — like Novo Nordisk’s Ozempic and Eli Lilly’s Mounjaro — that are approved only for type 2 diabetes. Those are often used off-label — though you wouldn’t hear that from many of their online boosters.

The drugs have shown promising clinical results, Jaisinghani and her peers emphasize. Patients can lose as much as 15% of their body weight. Novo Nordisk is sponsoring research to examine whether Wegovy causes reductions in the rate of heart attacks for patients with obesity.

The medications, though, come at a high price. Wegovy runs patients paying cash at least $1,305 a month in the Washington, D.C., area, according to a GoodRx search in late March. Insurers only sometimes cover the cost. And patients typically regain much of their lost weight after they stop taking it.

Hype Is Driving Demand

But patients are not necessarily coming to doctors’ offices now because of the science. They are citing things they saw on TikTok, like Chelsea Handler and other celebrities talking about their injections. It leads to the questions “how come she can get it” and “why can I not,” said Juliana Simonetti, a physician and co-director of the comprehensive weight management program at the University of Utah.

The excitement — which doctors worry may cause some patients to use medications inappropriately — is coming also from business interests. Some are doctors promoting their venture-capital-backed startups. Others are spas hawking everything from wrinkle-smoothing and lip-plumping to, yes, weight loss benefits of semaglutide, the active ingredient in Wegovy and Ozempic; their prices, often in the hundreds of dollars, are well below what consumers would pay if picking up the prescription at a pharmacy.

In the U.S., the FDA has oversight over ads from the pharmaceutical industry, which must acknowledge risks and side effects of drugs. But ads from people who write prescriptions don’t necessarily have the same restrictions. FDA regulations apply if the prescriber is working on behalf of a regulated entity, like a pharmaceutical manufacturer or distributor.

“The FDA is also committed to working with external partners, including the Federal Trade Commission (FTC), to address concerns with prescription drug marketing practices of telehealth companies on various platforms, including social media,” agency spokesperson Jeremy Kahn emailed KFF Health News.

Pharma firms run campaigns to educate health care professionals or raise “awareness” that may indirectly tout drugs. Novo Nordisk has an ongoing internet campaign to redefine and destigmatize how Americans think of obesity — and, left unmentioned, the drugs that treat it.

KFF Health News also found that, beyond the industry group’s examination, at least two other entities were promoting Novo Nordisk products in the United Kingdom.

Australian regulators have taken down nearly 1,900 ads as of early March for improperly plugging various GLP-1 agonists, an agency spokesperson told KFF Health News. Novo Nordisk says it didn’t put up the ads, the majority of which were for their product Ozempic. The regulators are declining to say who’s involved.

Doctors are also sounding alarms about the publicity. They believe patients will be driven to use these medications off-label, obtain unreliable forms of these drugs, or exacerbate other health conditions, like eating disorders. The drugs act in part as an appetite suppressant, which can dramatically reduce calorie intake to a concerning degree when not paired with nutritional guidance.

Elizabeth Wassenaar, a regional medical director for the Eating Recovery Center, believes the drugs and associated advertising buildup will inadvertently trigger eating disorders. KFF Health News found ads showing thin patients measuring themselves with a tape measure and stepping on the scale, with accompanying captions goading viewers into going on GLP-1s.

“They’re being marketed very, very pointedly to groups that are vulnerable to experiencing body image dissatisfaction,” she said.

Remi Bader, a curve model and TikTok creator specializing in documenting her “realistic” clothing buys, told one podcast her story of coming off a “few months” on Ozempic. She said she gained twice the weight back and that her binge eating disorder got “so much worse.” One study, published in the journal Diabetes, Obesity and Metabolism, found two-thirds of lost weight came back after discontinuation of semaglutide.

But social media users and influencers — whether with white coats or ordinary patients — are hopping on every platform to spread news of positive weight loss outcomes. There are those, for instance, who had gastric bypass surgery that didn’t work and are now turning to TikTok for guidance, support, and hope as they begin taking a GLP-1. There’s even a poop-centric Facebook group in which people discuss the sometimes fraught topic of the drugs’ effect on their bowel movements.

Commercialism and Compounding Spark Excitement and Concern

Some have been so delighted by their medication-assisted weight loss they have become brand ambassadors. Samantha Klecyngier has dropped at least 58 pounds since she started on Mounjaro. She heard of the drug and her telemedicine weight loss program, Sequence, on TikTok. She and many others who have experienced considerable weight loss since starting the medication regimen point to its positive impact and their improved quality of life. Now she officially promotes the company on the app.

Though Klecyngier, a mother of two from the Chicago area, is not diabetic, she uses Mounjaro. When she was growing up, her parents had Type 2 diabetes and other chronic diseases that led them both to have open-heart surgery. Her father lost his life to complications of diabetes. She wants to avoid that fate.

But Klecyngier’s story — combining a personal journey with a profit-making entity — is symbolic of another trend on social media: commercialism. There’s a spate of startups eyeing big money matching pharmaceuticals and related support with patients. (Sequence, the company Klecyngier pitches, just got acquired by WW, also known as WeightWatchers.)

Some doctors use social media to educate viewers about the drugs. Michael Albert, chief medical officer of telehealth practice Accomplish Health, says offering information to his more than 250,000 followers has helped point patients to the medical practice. It’s received thousands of patient inquiries, more than the clinic can take on.

Companies like Accomplish — startups with well-credentialed doctors — are the glossy side of this social media boom.

But there are others — like many spas and weight loss centers — that offer the drugs, sometimes without much medical support, often alongside Botox and dermal fillers. Obesity doctors worry such marketing is creating unrealistic expectations.

Some spas and telemedicine operators claim to have “compounded” semaglutide. But compounding — when pharmacies, rather than drug manufacturers, prepare a drug — is a risky proposition, doctors caution. “The risks are enormous,” Simonetti said, warning of potential contamination from poor compounding practices. “The risks of getting bacteria,” she warned, “the risks include death.”

Weight loss clinics also frequently tout unconventional additions to semaglutide, including vitamin B12 and amino acids. Some patients incorrectly believe the former helps with nausea, Jaisinghani said; other clinics tout greater weight loss.

Novo Nordisk spokesperson Allison Schneider told KFF Health News in an email that the company shares doctors’ concerns about compounding and that it’s begun sending letters warning “certain Health Care Providers” about the related risks.

Some operations defend their use of often-cheaper compounded drugs. LH Spa & Rejuvenation, founded by Zuena, offers a compounded semaglutide formulation from QRx Weight Loss for $500 over four weeks. The spa learned about the regimen from a doctor. “I’m purchasing it,” Zuena said. “It comes next-day air in legitimate vials with lot numbers, expirations.” Patients’ injections and dosages are overseen by on-site medical staff.

Most operators in this burgeoning industry are keen to emphasize their products’ high quality or their company’s good works, as they seek money. Ro, a telehealth firm offering GLP-1s, said its marketing campaign in the New York City subway “aims to start an important, sometimes difficult, conversation focused on de-stigmatizing obesity as a condition.”

This widespread tactic is nothing short of maddening for pharma industry critics. “They talk about trying to destigmatize obesity at the same time they’re talking about losing weight. They’re co-opting the concept,” said Judy Butler, a research fellow at PharmedOut, a Georgetown University Medical Center project focusing on evidence-based practices for drugs. “They’re trying to sell a weight loss drug.”

This story was published by KFF Health News on April 18, 2023. It is republished with permission.