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Misinformation is coming for the anti-HIV jab. Let’s get ahead of it – The Mail & Guardian

News RoomBy News RoomMay 26, 20267 Mins Read
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Imagine a world where a groundbreaking medical breakthrough, a twice-yearly injection called lenacapavir (LEN), could virtually eliminate the risk of HIV infection. This isn’t science fiction; it’s a reality on the horizon. But here’s the catch: even the most amazing scientific advancements are useless if people don’t trust them. We’ve all seen those social media posts—the ones that make you pause and wonder, “Is that really true?” They often involve health, from a friend’s story about a vaccine side effect to claims that a medication causes the very illness it’s supposed to prevent. These aren’t necessarily malicious posts; they’re often fueled by fear and confusion, shared by well-meaning individuals who just want to understand. This is the rocky information landscapeLEN is entering, a landscape where misinformation can quickly derail even the most promising health interventions. My background is in health behavior, and I’ve learned that getting people to adopt a new health product is never a given, no matter how effective or accessible it is. The real battle against epidemics isn’t just about scientific innovation; it’s about closing the gap between what a product can do and what communities actually do with it. And a major reason for this gap? You guessed it: misinformation. That’s why tackling the spread of false claims about LEN on social media is absolutely crucial for its success.

My colleagues Alison Buttenheim, Harsha Thirumurthy, and I, working with Indlela (a behavioral science unit at Wits University’s HE²RO), have been exploring this very challenge. Our research, published in BMJ Global Health, looked at common concerns and fake claims about a future HIV vaccine, which is a good stand-in for LEN since it’s also about preventing HIV. We found some consistent themes: the idea that HIV prevention tools are designed to harm specific groups, that they cause the conditions they’re meant to prevent, and that any severe side effects are being deliberately hidden. But what really jumped out at us when we surveyed 188 young South African women was which specific fears resonated most deeply. We expected to see more elaborate conspiracy theories, like claims that a vaccine was designed by foreign governments to sterilize Black women. However, the top concerns revolved around immediate, catastrophic physical harm: “it will kill you,” and fears of liver, kidney, heart failure, bone marrow damage, and cancer. These findings are a harsh reminder of the skepticism fostered during the COVID-19 pandemic, where safety fears were a primary reason for vaccine refusal. When millions get vaccinated quickly, tragic coincidences—like unrelated deaths happening soon after a jab—inevitably occur. These coincidences become stories, shared online and within communities, lodging themselves in memory far more powerfully than any correction. Our brains are simply wired to process vivid, emotional narratives more effectively than dry facts.

LEN, unfortunately, has a few characteristics that make it particularly vulnerable to misinformation. One of our biggest worries, as researchers, is that people will confuse LEN with a vaccine. After all, it’s an injection to prevent a disease, so it feels like a vaccine, right? But LEN is actually a form of pre-exposure prophylaxis (PrEP). A vaccine trains your immune system to fight off infection, while PrEP works by blocking HIV from entering your cells, and it only works as long as you keep taking it. This distinction is subtle but critical. General misinformation about vaccines could easily get layered onto existing misconceptions about LEN, creating a compounded misinformation problem. There’s another particularly concerning feature: the LEN injection can sometimes cause a visible nodule or bump under the skin. Most drug side effects are invisible—a headache, a bit of nausea. But a visible lump? That’s something that can be photographed. I genuinely worry about the day images of these nodules start circulating online, accompanied by captions designed to invoke fear and completely misinterpret the clinical reality. Misinformation thrives on a grain of truth, and a visible lump under the skin is a near-perfect hook for sensational, misleading claims.

Given this challenging landscape, our team has been testing a proactive approach called “psychological inoculation” or “pre-bunking” to make people more resilient to misinformation. Think of it like a medical vaccine, but for your mind. You expose people to a weakened “dose” of misinformation—for example, by showing a false claim in a humorous way that discredits it, alongside a clear explanation of how these tactics are used to manipulate beliefs. The goal is to build “cognitive antibodies,” mental tools that help individuals recognize and counter false information before they encounter it in the real world. We created 2.5-minute TikTok-style videos that showcased false claims about an HIV vaccine (since a vaccine doesn’t exist yet, it allowed us to “pre-bunk” before the misinformation got entrenched) and then explained why those claims were false. Working with a production company and young women from an HIV service organization, we made sure the videos were approachable and “de-Harvardized,” stripping away academic jargon so they’d actually be watched.

A trial with over 2,000 young South African women showed incredibly promising results. Participants who watched our pre-bunking videos were more likely to say they would accept a future HIV vaccine, even after seeing misinformation. In contrast, those who only saw the misinformation had 13% lower intentions to accept a vaccine than those who watched the videos. Perhaps even more importantly, the group that watched the pre-bunking videos was less likely to say they would share misinformation if they saw it on social media. The videos not only reduced the credibility of the specific false claims they targeted but also made people more skeptical of other, different pieces of misinformation. Even three weeks later, the positive effects persisted. Crucially, these videos worked best for participants who hadn’t received a COVID-19 vaccine—the very group most hesitant to vaccinate and most susceptible to misinformation. These are precisely the people who need support to ensure their decisions about LEN are based on facts, not fake news.

The implications of this research are significant. We’ve now adapted these video formats and persuasion techniques for LEN. Organizations promoting LEN are already sharing these videos on social media, and they’re freely available for anyone to use. We’re also starting a new study specifically focused on LEN misinformation, aiming to broaden our findings to a more diverse population. While two short videos, no matter how well-made, won’t magically solve the entire misinformation crisis, they are a powerful start. Scaling this kind of intervention to reach the women who need LEN most—those in communities where health conspiracy theories are deeply rooted, those less connected to digital platforms, whose decisions are shaped by their immediate social circles—will require substantial investment and coordinated effort. Government health departments, NGO partners, and community health workers all have vital roles to play. They must recognize the urgency of acting now, to confront the threat of misinformation before it goes viral and entrenches itself. Misinformation is one of the biggest public health challenges we face in the coming decade. It doesn’t wait for a product to launch; it thrives in the gap between excitement and access, between announcement and actual uptake. The window for “pre-bunking”—before false claims become impossible to dislodge—is open right now, and we must seize this opportunity to ensure that breakthrough medications like LEN can truly change the course of the HIV epidemic.

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