‘Patient influencers’ are being paid by big pharma to mislead TikTok users about drugs like Wegovy

So-called ‘patient influencers’ are being paid by big pharmaceutical companies to make content that might mislead their TikTok and Instagram followers, experts warn.

With trust in pharmaceutical companies decreasing, drug makers 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 put drugs such as weight-loss shots Ozempic and Wegovy in the spotlight, leading some to take it without a doctor’s prescription.

Research by the University of Colorado published this week in the Journal of Medical Internet Research found that patients who later become social media influencers often offer prescription drug advice to their followers and have close links with drugmakers.

Erin Willis, lead study author and associate professor of advertising, public relations and media design, said the practice ‘raises ethical questions’.

Ms Willis interviewed 26 patient influencers between March and April 2022 with conditions including lupus, fibromyalgia, Parkinson’s disease, asthma, HIV, celiac disease, chronic migraines and perimenopause.

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 with a pharmaceutical company in some way.

These include serving on advisory boards, speaking to physicians and researchers or communicating with key audiences.

Some 15 percent of the interviewees said they shared new releases from pharmaceutical companies with their followers if the information was relevant.

Twelve percent read medical studies and shared the results simply with their online audience.

Disseminating this information was not prompted by sponsorships or payments from the drug company — the influencers said they were doing 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 the neuroscience of migraine, but I can read peer-reviewed research and get the gist of it, minus the really technical sort-of-science-y parts.’

The study paper said: ‘The patient influencers wanted to be an accurate, trustworthy source for their followers and did not ever want to mislead other patients.’

But some were paid to post content for pharmaceutical companies.

The patient influencers used were also a curated sample provided by Health Union, a digital health company, which Ms Willis acknowledged meant they were likely to be on the responsible side.

Ms Willis said social media users will frequently fail to recognize the difference between a sponsored ad and a genuine, personal post.

She said: ‘Health literacy and digital literacy are both concerningly low in this country. The fact that patients with no medical training are broadly sharing drug information should alarm us.’

Multiple participants said followers often private message them to get more in-depth information about dosage and side effects.

Direct-to-consumer (DTC) drug advertising has been popular since it first began in the 1980s.

Still only legal in the US and New Zealand, it enables drug companies to target consumers directly instead of only going through doctors.

Roughly half of the patients who ask their doctor about a drug after seeing an advert on TV get given it.

DTC drug advertising is a booming market, and has grown almost five-fold from 1997 to 2016.

The Federal Trade Commission (FTC) mandates that influencers disclose if they have been paid by using hashtags such as #ad or #sponsored, and the Food and Drug Administration (FDA) has regulations on the sorts 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 tough to keep a handle on. 

Ms Willis said regulators need to ensure they are monitoring all the new platforms.

She said: ‘This is happening, with or without regulation, and people should be aware of it.’

Among Wegovy’s famous users is tech mogul Elon Musk. He credited the drug with making him ‘fit, ripped and healthy’ and said he lost almost 30lbs (13.6kg) while taking it.

He revealed that he was using it in October last year when a fan asked what the secret was to his new slimmed-down appearance.

‘Fasting’, Musk, 51, replied before adding: ‘And Wegovy’.