A new HIV prevention injection could change the course of the epidemic — but only if people trust it.
On your morning social media scroll, I’m sure you’ve seen posts doing what they do best: spreading information that makes you wonder: “Wow, is that really true?” It might even have been on a frequent subject of misinformation: health.
Maybe it was a personal story about someone’s sister or neighbour becoming sick after getting the Covid vaccine. Or a post claiming a medication causes the condition it was designed to prevent. Warnings shared thousands of times by people who are scared or confused, not malicious.
This is the information environment into which the new HIV prevention medication, lenacapavir or LEN — the extraordinary twice-a-year injection that essentially eliminates the risk of getting HIV — is being introduced.
Yet the excitement that we now have a pre-exposure prophylaxis (PrEP) product (medicine that prevents someone from getting infected with a germ like HIV before they get exposed to it) with the potential to stop the virus in its tracks doesn’t mean anything if people won’t take it.
I’ve spent years studying health behaviour and know that take-up is never guaranteed, even when a health product is effective and widely available.
The gap between what a product can do and what communities do with it is where a large part of the fight against epidemics is lost. Misinformation is one of the main culprits in creating the gap.
Getting ahead of misinformation on social media about LEN is one way we can help ensure its success.
New research that my colleagues Alison Buttenheim, Harsha Thirumurthy and I have just completed with Indlela, the behavioural science unit at Wits University’s Health Economics and Epidemiology Research Office (HE²RO), provides a promising way to do just that.
What we found
In a paper we published in BMJ Global Health earlier this year, we mapped the landscape of emerging concerns and false claims beginning to circulate about a future HIV vaccine.
We found recurring claims, including that HIV prevention tools are designed to harm specific populations; that they cause the conditions they’re meant to prevent; that their side effects are catastrophic and concealed.
But which ones would prevent a young woman from taking HIV prevention products? The results of our online survey, in which 188 young South African women rated 54 misinformation claims, surprised us.
We assumed beliefs that the vaccine could infect someone with HIV and other conspiracy theories would be more prominent; claims that a future HIV vaccine was engineered by foreign governments to sterilise black women, for instance.
But fears about catastrophic, terminal physical harm were what topped the list: that it “will kill you” and claims about liver, kidney and heart failure, bone marrow damage and cancer.
Why safety fears hit hardest
The findings align with a broader pattern we know from this age of vaccine hesitancy, itself driven by misinformation and amplified during Covid-19. Safety fears were among the primary drivers of Covid-19 vaccine refusal; research in South Africa found that nearly 40% of those most resistant to the Covid-19 vaccine believed it could be fatal.
This belief is partly a product of scale: when tens of millions of people are vaccinated over a short period, some deaths unrelated to the vaccine will inevitably happen shortly afterwards.
The coincidences become stories. Stories become posts. Posts become things that people see and share with others. The thing that a young woman hears from her friend or her aunt. And you can’t unhear it.
Once misinformation takes hold, it is difficult to dislodge even after repeated debunking. That’s just how human brains work. We process stories and emotional experiences far more powerfully than corrections. A vivid, frightening claim lodges in memory in a way that a later rebuttal simply cannot displace.
LEN has a few features that will make it particularly vulnerable to misinformation. One of the biggest worries researchers like myself and others have is that people will think of LEN as a vaccine — after all, it is an injection you take to prevent a disease. That’s a vaccine, right?
But LEN is PrEP and it works completely differently to a vaccine. A vaccine trains your immune system to protect you from a disease by making antibodies; PrEP blocks HIV from entering your cells and works only for as long as someone takes it.
Misinformation about vaccines in general could be layered onto other misinformation about LEN: compounded misinformation.
There is another feature that makes LEN especially vulnerable to misinformation or exaggeration: the injection can result in a visible nodule or bump under the skin. Most drug side effects are invisible — a headache, some nausea.
This one can be photographed. I am genuinely worried about what happens when images of the nodules start circulating; just imagine the captions and the implications they will make that have nothing to do with clinical reality. Misinformation needs a grain of truth to hook onto. A visible lump under the skin is close to a perfect hook.
Getting ahead of the spread
Our team tested an approach called psychological inoculation or pre-bunking, in order to make people less vulnerable to misinformation. We tested the approach with HIV vaccine misinformation because an HIV vaccine doesn’t yet exist, misinformation about it is emerging but hasn’t yet reached a point where many people have heard about it.
The psychological inoculation approach mirrors medical vaccination. You expose people to a weakened dose of misinformation by, for example, showing it in a context using humour that discredits the misinformation, alongside a clear explanation of the strategy used to manipulate attitudes, beliefs and behaviours before they encounter the misinformation in the real world.
You are building cognitive antibodies — the mental tools that help recognise and counter false information.
We created 2.5-minute TikTok-style videos that featured the false claims along with an explanation of why the claims were false. In partnership with production company Reel Epics, we co-created the videos through workshops with young women from an HIV service delivery organisation — who told us, bluntly, that our first scripts needed to be “deHarvardised”, stripped of academic language before anyone would watch them past the first five seconds.
In a trial with more than 2 000 young South African women (18-29 years old), which is under review for publication, participants who watched the pre-bunking videos increased their intentions to accept a future HIV vaccine after seeing misinformation — while intentions among those who didn’t see the pre-bunking videos and saw only the misinformation were 13% lower than those who watched the video.
Participants who saw the pre-bunking videos were also less likely to say they would share the misinformation if they encountered it on social media.
The videos reduced the credibility of the specific claims they targeted, as well as of other claims containing different misinformation. When we followed up three weeks later, the group that saw the pre-bunking videos continued to report intentions of getting an HIV vaccine higher than those who hadn’t seen the videos.
Crucially, the videos worked best among participants who hadn’t received the Covid-19 vaccine — in other words, those most hesitant to vaccinate — precisely the group most likely to be swayed by misinformation, and the group who therefore needs support to help ensure decisions about LEN are not biased by fake or misleading information.
Why this matters
Based on the results, we’ve adapted the videos for LEN. The same format, the same persuasion technique framework. The videos are being shared on social media platforms by organisations promoting LEN and are freely available for anyone to use.
We’re in the early stages of a new study, squarely focused on LEN misinformation, that will extend our findings to a more diverse socioeconomic sample.
We know that two short videos, however well-designed, will not solve a misinformation crisis on their own. Scaling this kind of intervention to reach the women who most need LEN — those in communities where health conspiracy theories have roots, those less connected to digital platforms, those whose decisions are shaped by what they see and hear in their immediate networks — will require serious investment and coordination.
The department of health, NGO partners and community health workers all have roles to play and they all need to recognise the need to act now and confront the threat of misinformation before it goes viral.
Misinformation is one of the greatest threats to public health we face over the next decade. It doesn’t arrive after a product launches. It grows in the space between excitement and access, between announcement and take-up. The window for pre-bunking — before the false claims become entrenched — is open right now.
Brendan Maughan-Brown is the chief research officer at Saldru at the University of Cape Town and a behavioural science technical expert at Indlela at the Health Economics and Epidemiology Research Office, University of the Witwatersrand.
This story was produced by the Bhekisisa Centre for Health Journalism. Sign up for the newsletter.