Article 69ZQA Weight-loss injections have taken over the internet. But what does this mean for people IRL?

Weight-loss injections have taken over the internet. But what does this mean for people IRL?

by
Amelia Tait
from MIT Technology Review on (#69ZQA)

Michael Edenfield's doctor calls him the Incredible Shrinking Man.

Between Thanksgiving 2021 and Christmas 2022, the 49-year-old aviation worker shed 129 pounds. Also gone: his sleep apnea machine, his high-blood-pressure medication, and a diuretic pill he had used to alleviate fluid retention in his legs. This is thanks to the only medication Edenfield takes today: Wegovy, a weight-loss drug he injects into his stomach once a week.

Edenfield's success story is the most popular post on a Reddit forum dedicated to weight-loss injections. Supportive commenters tell him he looks decades younger" and is very inspiring." What you can't read about-anywhere on the internet-are the experiences of his sister, a 54-year-old restaurant owner named Melissa Hall.

In October 2022, Hall began taking Mounjaro, an injectable diabetes medicine that was prescribed to her off-label as a weight-loss drug. She lost 27 pounds in a month and a half, but after her sixth weekly injection, she awoke feeling as though I had ripped something in my abdomen, right down the middle." She was diagnosed with pancreatitis, a sudden inflammation of the pancreas, and continued to experience stabbing pain" for a week. Though she is now recovered, her doctor refuses to prescribe her Mounjaro again. (Pancreatitis is a known possible side effect of these drugs.)

The Incredible Shrinking Man and his sister are one family with two very different experiences of our current weight-loss injection boom.

Wegovy and Mounjaro became household names in 2022, alongside other relatively young drugs such as Ozempic, Victoza, and Saxenda. Each of these drugs is a GLP-1 receptor agonist (GLP-1 RA), meaning it mimics the hormone glucagon-like peptide 1, which is released after eating and causes a feeling of fullness. Edenfield says Wegovy makes eating less pleasurable, while Hall says Mounjaro took away any desire to eat": I was eating almost nothing, and it was absolutely wonderful."

Over the course of the last year, these so-called miracle" weight-loss drugs have blown up across the internet. Celebrity news is made every time someone famous confirms or denies using the shots (Elon Musk: Yes. Khloe Kardashian: No). But these drugs owe much of their fame to social media and discussion boards, where they are promoted by everyday people and virality-chasing influencers alike. On TikTok, videos hashtagged #Ozempic have 600 million views. On Facebook, injection support groups accumulate tens of thousands of members. Across social media, influencers promote health-care services that provide compounded, non-branded formulations of these medications, something some obesity specialists have warned against.

When a drug takes over the internet, it of course takes over the world. People in their 20s, 30s, 40s are interested in what they've been seeing on the internet about injections to help lose weight," says LaTasha Perkins, a family physician at Georgetown University in Washington, DC. Since the winter of 2022, Perkins has seen a moderate increase in inquiries about weight-loss injections. This time last year I wasn't having these conversations about these particular drugs," she says. Now, patients come to her and specifically ask about Ozempic.

Yet not everyone who wants them goes to a doctor. Throughout 2022, rising demand for weight-loss injections caused global shortages. As a result, some people began seeking these drugs illegally, crossing borders or buying them under the counter without a prescription.

Do the hype and the hashtags tell the full story? What are the physical, social, and psychological side effects of a miracle? And can all the publicity lead people to do things they definitely shouldn't do?

Good side effects, bad side effects

In the beginning, weight loss was just a side effect. GLP-1 RAs were first developed to treat type 2 diabetes; their hormone-mimicking action provokes insulin production. In 2005, the US Food and Drug Administration approved the first drug of this kind, Exenatide, for diabetics. Throughout the 2000s, more and more GLP-1 RAs came onto the market. Right away, patients noticed that these drugs didn't just treat their diabetes-they also helped them lose weight.

Ozempic and Wegovy, the brand names of a GLP-1 RA known as semaglutide, are both made by Novo Nordisk, a Danish pharmaceutical company. Though they both contain the same active ingredient, the drugs have different indications, dosages, prescribing information, titration schedules, and delivery devices. In 2017, Ozempic was first approved as a diabetes treatment, and doctors soon began to prescribe it off-label to overweight patients. Subsequently, Novo Nordisk developed Wegovy specifically for weight loss. In June 2021, it became the first new treatment for chronic obesity approved by the FDA since 2014.

Then, in May 2022, the FDA approved Mounjaro as a diabetes treatment; now the agency is officially fast-tracking" the investigation of its active ingredient, tirzepatide, for obesity. A spokesperson for the drug's manufacturer, Eli Lilly, said it is presently only approved for glycemic control in adults with type 2 diabetes and the company does not promote or encourage use of Mounjaro outside of its FDA-approved indication." Nonetheless, since the drug came to market, doctors have been prescribing it off-label for weight loss-there are almost 100,000 members in a Facebook group called Mounjaro Weight Loss Success."

Clinical trials have shown that tirzepatide patients lose at least 20% of their weight in 72 weeks, while overweight adults on Wegovy lose an average of 15% of their body weight in 68 weeks.

Edenfield is one such success story. Unable to work at the height of the pandemic, he had stayed at home eating a lot and eating very unhealthy." He compares his diet to a teenager's: regular consumption of fast food sandwiches, cheese steaks, and burgers accompanied a crippling addiction" to Coca-Cola. When his weight crept up to 357 pounds (he is 6 feet 3 inches tall), he sought gastric sleeve surgery because his employer would cover the cost. Yet the doctor he met with suggested Ozempic instead. He lost 15 pounds in his first month on the drug and switched to Wegovy in February 2022. He now weighs 228.

michael.jpeg?w=1544COURTESY OF MICHAEL EDENFIELD

It's changed every aspect of my life," Edenfield says-he no longer feels hijacked" by hunger and doesn't get out of breath walking to work. I feel like I'm in my 20s again," he says.

The results may be enviable, but the day-to-day reality of weight-loss injections is not always pleasant. The most common side effects are gastrointestinal, including nausea, diarrhea, and constipation. Edenfield consulted Reddit for tips on alleviating brutal" nausea. A number of subreddits dedicated to semaglutide have sprung up or grown in popularity over the last year-the one Edenfield posted on was created in 2021 and has almost 22,000 members today. Meanwhile, countless Facebook groups have also been created during the weight-loss injection boom. Here, people report experiencing vomiting, headaches, fatigue, sulfur burps," and hair loss-though the vast majority seem to feel it's a small price to pay for losing weight.

During the 68-week Wegovy trial, 4.5% of participants discontinued treatment because of gastrointestinal events. Peter Kurtzhals, Novo Nordisk's chief scientific advisor, says that such side effects normally decline gradually as patients build up a tolerance to the drug. A company spokesperson adds that patients experiencing nausea on Wegovy should contact their health-care provider, who can offer guidance on ways to manage it."

Yet sometimes, side effects are more serious. Fatal and non-fatal pancreatitis has been observed in patients treated with GLP-1 receptor agonists. GLP-1 RAs act on pancreatic cells to increase insulin production, and some scientists theorize that they can also cause an overgrowth of cells in the pancreas, though studies have shown conflicting results. One 2021 study of 2,245 obese patients given GLP-1 RAs found that 2.2% developed acute pancreatitis; a history of type 2 diabetes, tobacco use, and chronic kidney disease increased the risk. Novo Nordisk's spokesperson says that the company remains confident in the benefit risk profile of its products and remains committed to ensuring patient safety."

Warnings on the prescription information for Wegovy and Mounjaro read: Discontinue promptly if pancreatitis is suspected." Yet patients don't always want to listen.

Taking risks

Dangerous side effects are nothing new when it comes to weight-loss drugs. But that doesn't always deter people from seeking them out.

Lauren LeFebvre calls herself the poster child for all the weight-loss prescriptions." In the summer of 1981, at just 14, she took her first over-the-counter appetite suppressant, Dexatrim, which at the time contained phenylpropanolamine (PPA). In 2005, the FDA removed PPA from the market after it was found to increase the risk of brain bleeds.

LeFebvre, who is now 55 and a town clerk in New York, took a number of since-discontinued weight-loss drugs in the decades that followed. She has consumed fen-phen, which was withdrawn in 1997 after it was found to cause heart valve diseases; Meridia, which was associated with 29 deaths before it was pulled off the market in 2010; and Belviq, which was once praised as a holy grail" but was withdrawn in 2020 because of increased cancer risks.

They were discontinued because they were a death risk to people, but they worked for me. Each time I used those I lost like 50 pounds," she says. In 2021, she was prescribed Wegovy. Between November of that year and October 2022, she dropped from 196 pounds to 126. At 5 feet 7, that put her within nine pounds of being considered medically underweight.

Then, in August 2022, with Wegovy in short supply, she was unable to get the 1.0-milligram dose she had been taking. (Patients typically start on 0.25 mg and if necessary can increase the dosage every four weeks until they reach a maintenance dose of 2.4 mg.) LeFebvre waited two months before she and her doctor agreed to try her on the next highest dose. She injected 1.7 mg of Wegovy two weeks in a row.

I should have gone to the hospital. I had a reaction and it was bad," she says. It took me out of commission for three days. I was in bed, delirious, throwing up ... In the middle of it I had panic attacks, which I hadn't ever had in my life. I thought I was really going to die."

LeFebvre suffers from a dysfunction in one of her pancreatic duct valves known as the sphincter of Oddi: when it's triggered, the valve will not release biliary and pancreatic juices, causing a backlog that results in abdominal pain. Injecting a higher dosage of Wegovy seemed to trigger the dysfunction. It was excruciatingly painful," she says. Novo Nordisk does not comment on potential side effects in individual patients, but adverse reactions can be reported on its website.

LeFebvre immediately threw her remaining Wegovy pens away and regained four pounds in her first two months off the medication. Despite her negative experiences, she later joined an 8,500-member Wegovy support group on Facebook, asking others if they'd had luck obtaining 1.0 mg pens.

That's messed up. As a human being, I know, that's messed up," LeFebvre says of her desire to go back on the drugs. Seeing success stories in the Facebook group made her feel jealous, sad, mad, disappointed, lost, and fat."

In January 2023, LeFebvre resumed taking Wegovy at a dosage of 0.25 mg.

Melissa Hall, the restaurant owner, was in a similar frame of mind. When her doctor refused to prescribe any more Mounjaro after her pancreatitis attack, Hall was not entirely convinced she should stop.

I told her I still have the one pen. She told me, Do not do it,'" Hall says, but I've been thinking about doing it anyway."

Almost two decades ago, Hall was hit by a drunk driver and, unable to exercise, gained 100 pounds. She wants to lose weight to be able to walk and ride a bike freely again without pain.

If my doctor said Maybe we could try one more time,' I would do it. Absolutely I would try it again," she says, three months after the side effects caused her so much pain. I will take that gamble and face that possible illness or other side effects to get this weight off and to feel good again. It's worth it."

And if her doctor says no? Hall has decided she will seek the treatment elsewhere.

The influencer effect

One year ago I was 80 lbs heavier and would never have attempted this dress ..."

Officially down 25 lbs ..."

Come with me to get my first weight-loss shot!"

Scroll through the hashtag #semaglutide on TikTok and you will see countless success stories shared by excited, ebullient people. Some of these people are spontaneously spreading the word about a drug that has changed their life, but others have been paid to do so. It is often not clear who is who.

In the United States, online drug advertising is legal for on-label uses. Yet there is very little regulation of patient influencers" who discuss their medical conditions and treatments on social media, says Erin Willis, an associate professor of advertising at the University of Colorado, Boulder, who researches this phenomenon. FDA regulations on social media have not been updated since 2014, she notes.

To Willis, the patient influencer trend is both good and bad. Some patient influencers say they receive countless messages about how they've helped people find their treatment option or empowered them to talk to their doctor," she says. On the other hand, some may break the rules to try to market covertly, and they may have undue impact on their followers because of the strong parasocial bonds that underpin influencer marketing.

MIT_Hollywood_Final.jpg?w=3000ANDREA DAQUINO

There's a lot of potential in the area of patient influencers," Willis says, but I also think the government needs to step in, or there need to be some best practices put out by advertising agencies."

While neither Novo Nordisk nor Eli Lilly pays influencers or online health-care providers to tout Wegovy or Mounjaro, a growing number of telehealth providers pay TikTok creators to promote their services. Sometimes they provide affiliate links that track how many referrals influencers bring to the company, allowing them to earn a commission with every click. These providers offer prescriptions in virtual office visits, forgoing the need for a face-to-face appointment. Some simply prescribe the drugs to patients while others send the drugs directly. Many create custom weight-loss programs to follow in addition to injecting the drugs.

Sequence is one such weight-loss program that advertises on TikTok; the company prescribes FDA-approved, branded GLP-1 RAs, and videos hashtagged #JoinSequence have a combined 14 million views. Via another hashtag, the #SequenceCircle, the program's users have organically forged a community. Sequence also pays a small number of influencers to spread the word, but they are told to tag their posts as sponsored. Sequence's medical director, Spencer Nadolsky, has over 60,000 followers on his own personal TikTok page, where he discusses Sequence and semaglutide.

Staci Rice, who takes semaglutide for weight loss, directs her 12,000 TikTok followers to the telemedicine provider Full Circle Health and Wellness via a link in her bio. Rice first found out about the provider's program through a promotional Facebook post; she signed up and began taking compounded semaglutide in May 2022. After she began talking about her experiences on TikTok, Rice gained 10,000 followers.

Rice is not paid to promote Full Circle Health and Wellness. She does it because of the gratitude she feels to its owner, a certified nurse practitioner, for transforming her health: She helped me out a lot and I feel very loyal to her," she says. I don't work for her, I'm not paid by her, and I've actually turned down a lot of offers because I'm loyal to her." Full Circle Health and Wellness did not respond to a request for comment.

Rice said she first started making TikTok content about semaglutide because she wanted to help others." If it didn't work," she adds, I wanted to tell people my personal view was to not waste your money, or if it did work, then maybe I could help other people out."

Another semaglutide influencer is Kennedy Massey, a 25-year-old advertising professional from Nebraska whose agency creates advertisements for telemedicine provider Apollo Virtual Health. Last summer, Massey approached Apollo outside of work to discuss starting on the drugs; the company asked her to record her journey and post about the good and the bad" on TikTok, where she now has 4,800 followers. She estimates that at least 200 people have messaged her directly to ask about her experience. It just makes me feel really good that I can inspire people to do something better for themselves," she says. Massey is Apollo's only influencer, and she is not paid to promote the company. But in return for her TikToks, the company supplies her with free medication.

Apollo's director of telehealth, Andrea Meisinger, says the company does not use affiliate links with influencers because we consider that unethical in the medical arena." Apollo does not dictate the content, messaging, or frequency of Massey's TikToks.

Compounding problems

If you learned everything you know about weight-loss injections from the internet, the dangers might not be apparent.

On TikTok, people show off slender bodies that they credit to the drugs, while on Reddit, people ask for advice about how to obtain medication if they're not overweight. Ozempic is rumored to be used cosmetically by celebrities, causing it to be branded a Hollywood drug." Perkins, the family physician, says she has seen a small fragment of people" who come to her wanting to use it to lose 10 pounds.

In clinical trials, Wegovy has only been tested on obese or overweight people, however, meaning it is unclear what side effects occur if thin people take the drug. It's designed for obese adults (with a BMI over 30) or overweight adults (with a BMI over 27) who have other weight-related medical problems. Novo Nordisk stresses that Wegovy should be used with a reduced-calorie meal plan and increased physical activity.

Ozempic, meanwhile, is not approved for weight management at all, and a Novo Nordisk spokesperson says patients without type 2 diabetes should not take this medicine."

While we recognize that some health-care providers may be prescribing Ozempic for patients whose goal is to lose weight, Novo Nordisk does not promote, suggest, or encourage off-label use of our medicines," the spokesperson says.

But when doctors turn unsuitable patients down, some seek weight-loss injections without a prescription, crossing borders, buying drugs illegally under the counter, or turning to disreputable, unlicensed sellers who wave the medicine around on social media.

Moderators of weight-loss injection Facebook support groups warn users against illicit sellers. A post pinned to the top of a 3,800-member group reads: Hi everyone! We do NOT allow selling of medications in this group! If you see such a post PLEASE report it so we can remove both the post & member!" One reply reads: I have gotten several offers through Messenger."

This underground trade is exacerbated because even patients who qualify cannot always obtain diet drugs. In March 2022, in the midst of shortages, Novo Nordisk temporarily stopped shipments of starter doses of Wegovy in an attempt to turn new patients away. Even with shortages ending, high costs mean some patients can't afford official sources. Weight-loss injections are not usually covered on Medicare, while Medicaid coverage varies by state. Out of pocket, Wegovy can cost up to $1,349 a month (a Novo Nordisk spokesperson says the company advocates for broadened insurance coverage of anti-obesity medications).

In the face of shortages, some people have turned to compounded versions of brand-name medicines. Compounding is an age-old practice in which pharmacists mix up custom drugs for a patient, sometimes for safety reasons (for example, pharmacists can leave out an ingredient a patient is allergic to). Obesity specialists have spoken out against compounded semaglutide (which is often mixed with other ingredients, such as B vitamins) because the formulations haven't always undergone testing and there's little oversight in the industry. Novo Nordisk, the only company in the US with FDA-approved semaglutide products, does not directly supply any compounders or telehealth providers. But across the internet, compounding pharmacies claim to be offering generic versions of the drugs.

Rice, the TikTok influencer, takes a compounded version of semaglutide and says she has no concerns about the risks because she has lost 62 pounds; she also says she doesn't want to contribute to shortages of brand-name drugs. Massey, the advertising executive, is not sure what to make of warnings against compounded injections, That kind of realm, I'm not the most educated in. So I'm not sure," she says. Both say they feel a responsibility to their TikTok followers to discuss these drugs accurately and not claim to have medical expertise that they don't have.

Compounded versions of weight-loss injections are also often easy to get without seeing a doctor in person. Apollo Virtual Health ships them directly to patients' doors. When asked how the company verifies that patients are overweight or obese, Meisinger said all patients are required to have a virtual face-to-face appointment with one of the company's licensed medical providers, who conducts a full medical history and visual assessment." Follow-up appointments are required every two weeks.

As for the warnings against compounded semaglutide, Meisinger said: We are aware of the recent increase in online options to keep up with the popularity of GLP-1 medications. We have worked with our pharmacy for several years without a single issue. We fully investigated and vetted the leading compounding pharmacies, and chose a PCAB-accredited, 503A-designated compounding pharmacy that is routinely inspected by the FDA."

MIT_bodies_Final.jpg?w=3000ANDREA DAQUINO

But some providers are less scrupulous. A February 2023 investigation by Jamie Nguyen, a reporter for the Today show, found that a number of websites offer weight-loss injection prescriptions without seeing or speaking to a doctor, relying on patients to fill in their information honestly on online forms. Nguyen was able to gain multiple prescriptions despite not being obese or diabetic.

Novo Nordisk is aware of the growing trend of weight-management telehealth providers" advertising injections, according to a spokesperson, who said: We cannot prevent physicians who treat patients via telehealth from prescribing medications that are then filled by pharmacies. Novo Nordisk does not support or promote the use of our medicines outside of the FDA-approved indication, whether by telehealth providers or otherwise."

This is a prescription drug for a reason," says family physician Perkins. You need medical guidance. You need a person who has studied the science of medicine to help guide you on a prescription, because you don't know the dose-you don't know what happens if you take too much."

Where now?

The weight-loss injection explosion is far from over. At the start of the year, the FDA approved semaglutide for adolescent use; the drug is now available for obese children 12 years old and up. Meanwhile, shortages are coming to an end.

We are taking significant measures to increase our production capacity," a Novo Nordisk spokesperson says. In the first half of 2023, a second contract manufacturing organization for the drug is expected to come online. Meanwhile, Eli Lilly plans to finish clinical trials of Mounjaro for obesity by April.

In the coming year, miracle weight-loss drugs will only become even more commonplace. It remains to be seen how the injection boom will change the world, but on an individual level, there's no denying it has already been transformative.

I don't want to sound like I'm a spokesman for it or anything else, but it really has been life-changing to me," says Edenfield. No longer imprisoned by cravings, today he eats a diet of salads, protein shakes, and grains. Edenfield's only concern is that he may gain weight if he stops taking the drug, but he says his eating habits have changed so drastically that he isn't too worried: I feel I'm in a spot to keep it off now."

Studies have found, though, that one year after finishing treatment, semaglutide patients regain two-thirds of the weight they lost on the drug. One woman involved in a 2018 clinical trial of Wegovy has since regained almost all of the 75 pounds she initially lost.

Once you get off the drug, you will go back to your original weight again," Novo Nordisk's Kurtzhals says. He compares weight-loss injections to hypertension drugs, which many patients take for life to keep their blood pressure down. Already, patients are taking maintenance doses." Yet Novo Nordisk has only two years of clinical trial data for Wegovy. We haven't got data that's followed patients for a longer time," says Kurtzhals.

When asked about this, Novo Nordisk's spokesperson said: GLP-1 receptor agonists have been used for more than 15 years, including Novo Nordisk products that have been on the market for more than 10 years. Our GLP-1 medicines have been used by many patients across indications and doses. To date, the safety data from trials and post-marketing safety surveillance have not identified any risks that outweigh the benefit of treatment." Novo Nordisk is continuously surveying data on the real-world use of its products.

Edenfield, for one, is not concerned. If there are long-term effects that come out 10 years down the road," he says, if it gives me 10 years of being at this weight and being this active, it's almost worth it."

Edenfield's experiences have been so overwhelmingly positive that at the end of our call, I felt the need to ask if he thinks there are any downsides at all to weight-loss injections. That's when he mentioned his sister, Melissa.

I'm really happy for my brother," Hall says, And I'm really happy for a real good friend of mine that started it a few weeks after I started, and she's having wonderful results as well." Yet Hall can't help feeling left out. I'm really angry and bitter for myself," she says. Because I want it too. I want to get the weight off. I want to feel good."

While Edenfield has shared his success on Reddit and Facebook, Hall avoids talking about her experiences online. The reason is because if I fail," she says, I don't want people to say, She's still fat."

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