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So-called “patient influencers” are paid by major pharmaceutical companies to create content that could mislead their TikTok and Instagram followers, experts warn.
With trust in pharmaceutical companies dwindling, drug companies are cashing in on real patients turned social media influencers to spread the word about their products.
An influx of posts on TikTok and Twitter has spotlighted drugs such as Ozempic and Wegovy slimming shots, leading some to take it without a doctor’s prescription.
The hashtags Ozempic and Wegovy are among the most popular for pharmaceutical drugs on TikTok. Many patients share their experiences of taking the drugs and promote weight loss, although not all reviews are completely positive. Videos range from hundreds of thousands to millions of views
Research from the University of Colorado appeared this week in the Journal of medical internet research found that patients who later become social media influencers often provide prescription drug advice to their followers and have close ties to drug manufacturers.
Erin Willis, lead author of the study and an associate professor of advertising, public relations and media design, said the practice “raises ethical questions.”
Ms. Willis interviewed 26 influencers of patients with conditions such as lupus, fibromyalgia, Parkinson’s disease, asthma, HIV, celiac disease, chronic migraine and perimenopause between March and April 2022.
The majority were “micro-influencers” with between 1,000 and 40,000 followers.
These people are generally cheaper for advertisers to work with than celebrities with a larger following.
More than half (69 percent) had collaborated in some way with a pharmaceutical company.
These include serving on advisory boards, speaking with physicians and researchers, or communicating with key audiences.
About 15 percent of those interviewed said they would share new drug company releases with their followers if the information was relevant.
Twelve percent read medical studies and easily shared the results with their online audience.
The spreading of this information was not motivated by sponsorship or payments from the pharmaceutical company – the influencers said they did it because “they wanted to be credible to their followers.”
One participant said, “I feel like I have a unique skill set where I’m not trained in migraine neuroscience, but I can read peer-reviewed research and understand the gist of it, minus the really technical kind of science-y parts.”
The study paper said, “The patient influencers wanted to be an accurate, reliable source for their followers and never wanted to mislead other patients.”
But some were paid to post content for drug companies.
The patient influencers used were also a curated sample from Health Union, a digital health company, who Ms. Willis acknowledged were likely on the responsible side.
Ms Willis said social media users often won’t recognize the difference between a sponsored ad and a real, personal post.
She said: ‘Health literacy and digital literacy are both alarmingly low in this country. The fact that patients without medical training are widely sharing information about medicines should worry us.’
Multiple participants said followers often private message them to get more in-depth information on dosage and side effects.
Direct-to-consumer (DTC) drug advertising has been popular since it first began in the 1980s.
It is still only legal in the US and New Zealand and allows drug companies to target consumers directly rather than going through doctors alone.
About half of the patients who ask their doctor about a drug after seeing an ad on TV receive it.
DTC drug advertising is a thriving market, increasing almost fivefold between 1997 and 2016.
The Federal Trade Commission (FTC) requires influencers to disclose whether they’ve been paid by using hashtags like #ad or #sponsored, and the Food and Drug Administration (FDA) has rules about the types of things that can be said on social posts.
However, these are open to interpretation and features such as videos, disappearing content, and direct messages can be difficult to control.
Ms Willis said regulators should make sure they keep an eye on all new platforms.
She said, “This is happening, with or without regulation, and people need to be aware of it.”
One of Wegovy’s famous users is tech mogul Elon Musk. He attributed the drug to making him ‘fit, ripped and healthy’ and said he lost nearly 30 pounds (13.6 kg) while taking it.
He revealed that he used it last October when a fan asked what the secret was to his new slimmed-down look.
“Fasting,” replied Musk, 51, before adding, “And Wegovy.”