‘Patient influencers’ paid by Big Pharma to mislead followers: report

There’s no better way to reach an audience today than through social media — and Big Pharma is well aware of that.

The video-sharing platform TikTok, for example, is being flooded with videos of users testifying to wellness through prescription drugs, with hashtags like #adhd (22.3B views), #ozempic (675.1M views) and #wegovy (259.3M views) consistently trending as of late.

Now, experts are warning about this misleading tactic by drugmakers, to pay popular social media users to espouse their products under the guise of honest reviews, in a new study published this week in the Journal of Medical Internet Research.

These so-called patient influencers, or patient “advocates,” are social media influencers who use their platform to promote pharmaceutical medications and/or medical devices.

Researchers at the University of Colorado Boulder analyzed 26 recent interviews with patient influencers, who had been diagnosed with conditions such as lupus, fibromyalgia, Parkinson’s disease, asthma, HIV, celiac disease, chronic migraines and perimenopause.

“The patient influencers wanted to be an accurate, trustworthy source for their followers and did not ever want to mislead other patients,” the researchers were encouraged to find.

According to researchers’ assessment, the majority (69%) had previously collaborated with a pharmaceutical company in some way — serving on advisory boards, speaking to physicians and researchers or communicating with key audiences — but appeared to have an honorable intention to spread awareness and information about their condition.

About 15% of the cohort said they share news releases from pharmaceutical companies with their followers if the information was deemed relevant, and 12% claimed to cite medical studies to explain the information to their followers.

Only five of the patient influencers reported they’d never shared information about drugs, believing it would be “borderline unethical” to do so. Several, however, weren’t too ashamed to take money from drugmakers.

Researchers expect that the influencer marketing industry will be valued at $21.1 billion in 2023.

The Federal Trade Commission mandates that influencers must disclose if they have been paid by using hashtags, such as by adding #ad or #sponsored to related posts, while the Food and Drug Administration has rules and regulations regarding what can be said on social posts. Nevertheless, many consumers fail to decipher a sponsored ad from genuine peer-to-peer advice, researchers fear.

“Health literacy and digital literacy are both concerningly low in this country,” said author Erin Willis, an associate professor of advertising, public relations and media design at CU Boulder. “The fact that patients with no medical training are broadly sharing drug information should alarm us.”

Patient influencers make up one form of direct-to-consumer (DTC) drug advertising — legal only in the United States and New Zealand — which allows drug companies to target consumers directly, rather than through physicians.

DTC drug advertising has been popular but controversial since it first began in the 1980s — but this new, under-regulated medium is especially worrying to experts, who say these patient influencer ads often lack all the necessary information that patients need to know.

The most recent and glaring example of the impact of patient influencing — which was heightened by celebrity endorsements — is the current Ozempic craze and shortage. The diabetes drug, along with a similar drug called Wegovy, is being widely touted on social media as a quick weight loss solution.

The off-label use of Ozempic and Wegovy was so rampant last year that the FDA was compelled to warn about the dubious increased demand for the drugs, amid a report on the ongoing shortages that have left some diabetics struggling to maintain their health.

It’s not just Big Pharma — directly, at least — cashing in on the social media market. Medical start-up Done, which markets various treatment plans for attention-deficit/hyperactivity disorder, has also recently been accused of undermining legitimate diagnoses by putting too much emphasis in their ads on the many benefits their drug catalog offers.

“That is a really, really thin line between advertising and almost baiting,” Dr. Yamalis Diaz, a child and adolescent psychology specialist at New York University’s Grossman School of Medicine, previously told The Post. Her younger patients, she lamented, come to her already with “certain [brand] names in their mind.”