Patient Influencers and (controversial) posts on drugs and therapies

From Ozempic to aspirin

There are people who through their social channel they regularly offer medication advice (even prescription ones) to their followers.
From contraindications, to results up to practical advice on dosage and duration of treatments, these “patient influencers” (from “patients” and “influencers”: who influences patients) they often start from personal experiencesor so they say, to act like were they doctors or pharmacists and become the reference point for hundreds and hundreds of followers.
There is a “but”, as always: according to a survey by the University of Colorado, these are people who have very close friends links with some pharmaceutical companies. In short, they are paid.

The study was published in the Journal of Medical Internet Research and analyzes the background of the rise of patient influencers describing them as “a form of direct-to-consumer interactive advertising” based sharing knowledge and personal experiences on drugs with communities of followers where they have great influence.
The author of the research is Erin Willis, associate professor of advertising, public relations and media design and the reason behind her work is the ethical implications of marketing operations involving health.
As a demonstration of how impressionable people are we can bring it up the story of Ozempic, the appetite-suppressing diabetes drug and causes rapid weight loss.
As soon as it landed on social media, Ozempic has trumped any other weight loss method so much so that in the world, including Italy, there are many diabetic patients who are running out.
From TikTok to Twitter however, now that a few months have passed, posts about terrible side effects that no influencer was talking about are starting to appear: violent discharges of diarrhea on one side, the haggard face, like a deflated balloon on the other.
This is a great example of the outreach power of social media and communication gullibility of peoplewho don’t “trust” traditional media such as print and TV, but a seventeen year old who lives in Nebraska does.

Patient influencers and lies

But why would a seventeen-year-old from Nebraska or a twenty-two-year-old from Monza, from Tokyo, from Munich, throws into drug sponsorship?
Pharmaceutical companies can take advantage of the influencers’ services to build different narratives from those they would build on traditional media, leveraging the dynamic of trust that is created between a / a creator and his audience.
And not just pharmaceutical companies: according to insiders, in 2023 the influencer marketing sector will have a turnover of $21.1 billion.
Returning to drugs, thanks to the creativity of influencers, contents become interesting and extravagant: videos in which i liars are read and praised, videos of before and after a treatment, heartbreaking stories about how the miraculous effects have improved existence.
Obviously there is, in the tide of patient influencers, too some enlightened who recommend seeing and being seen in turn by a doctor or who try to behave ethically with respect to the issue of health, mental and otherwise.
But they are few: whether they sponsor drugs or hair dyes, influencers highlight the benefits of a product without ever mentioning the side effects.

For example in 2015 the influencer Kim Kardashian spoke on her social networks about Diclegis, a drug born from the combination of doxylamine and pyridoxine which is used to prevent or reduce the nausea and vomiting typical of pregnancy.
However, the Food and Drug Administration flagged the post for omitting the long list of risks associated with the use of the drug (heart irregularities, confusion, vision loss) and requested Kardashian to remove itafter admonishing the manufacturer, Duchesnay.
In fact now, at least in America, the Federal Trade Commission (FTC) requires influencers to publicly say when they get paid indicating it with hashtags such as #ad (advertising). Something that, however, cannot be controlled and therefore does not work with stories that disappear in 24 hours or with private messages.

What the law says in Italy

The patient influencers they start from their stories, their vulnerabilities and their conditions of health to tell about a product, for this reason the public finds their videos trustworthy: a 2020 survey conducted by Wego, a patient influencer agency, found that 51% of respondents said they trusted patient influencers mainly or totally .
In return for sponsoring a healthcare product or service, a patient influencer can expect to earn from “a few hundred to a few thousand dollars” to a single post, depending on his health conditions and the size of his follower pool.
But while the United States is one of the two countries (the other is New Zealand) more liberal in this respect and allows direct-to-consumer (DTC) ads even for prescription drugs, in Italy it doesn’t work like that.

Here it is forbidden to advertise medicines to the public which can only be supplied upon presentation of a medical prescription or which contain psychotropic or narcotic substances and in the press, radio, TV it is forbidden to show a medicine in images or its denomination “in a context that can favor the consumption of the product”. And in any case, every company must ask permission to advertise its drugs to the Ministry of Health.
Given that according to our jurisprudence we speak of “medical devices” also in relation to yoga mats, by law pharmaceutical companies can ask the Ministry to collaborate with influencers for a maximum of ten posts, in which the influencer is forbidden to refer to scientists, well-known personalities in the medical field and healthcare professionals.

Videos of Bianca Bonafede

A push for disinformation (already rampant)

Are patient influencers, celebrities and forums a problem?
This new mode, based on trust in the stranger on duty with hundreds of thousands of followers, improves the reputation of a drug in a social context poorly literate – both digitally and healthcare – and increasingly broad, in which the “celebrity culture” mixed with distrust in the institutions can only create cracks.
Not very different from the so-called “native”, or native advertising, such as the promotion of a product that does not even mention at times, the product and does not use slogans but which with a soft content indicates to the public what “is best for him”.
Here too, the the line between paid content and real testimony is blurred: elements such as transparency, ethics and trust are missing in all cases and online communities, of which social networks are the extreme, are increasingly independent – and increasingly ignorant – with respect to many issues.
Including medicine.

People exchange information about symptoms, therapies or side effects with doctors or other health professionals but also with people without a shred of degree (or are multi-graduates but in other faculties) who however enjoy the full trust of their followers or of the other people present, if it is a Facebook group.
An example above all? A well-known group of tummy momsin which there is a constant talk of home medical practicessometimes very risky, for the health of mothers, pregnant women, fetuses, newborns and women of childbearing age.
Therefore, beyond the new marketing strategies, it is necessary to understand that the entire decision-making process of people, with respect to the use of drugs – or hair dye – has been distorted by the internet.
Then, it is clear that the extent to which influencers influence decision-making processes, cause harm (or benefit) by distributing recommendations or fueling disinformation already rampant needs to be analysed.
But it must be analyzed as part of the context and not as a phenomenon in itself.

She is a journalist, writer and feminist and LGBTQIA+ activist. She is a member of and works with several associations and organizations that promote gender equality and the equality of…