Imagine a future where HIV, a disease that has caused so much suffering and loss, is no longer a looming threat. This isn’t a far-off dream; it’s a very real possibility with the introduction of lenacapavir, or LEN, a revolutionary injection that provides two-yearly protection against HIV. Starting June 5th, South Africa will be a pioneer in making this life-changing prevention tool available. This is truly incredible news, offering a glimmer of hope that we could finally put an end to the HIV epidemic. However, the path to a healthier future is fraught with challenges, and one of the most insidious is misinformation.
We’ve all been there: scrolling through social media, seeing posts that grab our attention and make us wonder if what we’re reading could possibly be true. Often, these posts delve into health topics, stirring up fear and confusion rather than spreading accurate information. Perhaps it was a friend’s aunt who supposedly fell ill after a vaccine, or a viral claim about a medication causing the very condition it was meant to treat. These emotional stories, shared by well-meaning but misinformed individuals, spread like wildfire, creating an environment of doubt and suspicion. It’s into this very landscape that LEN is arriving, a powerful tool with the potential to eradicate HIV, but its effectiveness hinges entirely on people’s willingness to embrace it. For those of us who have dedicated our lives to understanding health behaviors, we know that even the most effective medications don’t automatically guarantee widespread adoption. The chasm between what a product can achieve and what communities actually do with it is where the fight against diseases is often lost, and misinformation is a major culprit in widening this gap.
To combat this, a team of dedicated researchers at Indlela, the behavioral science unit at Wits University’s Health Economics and Epidemiology Research Office (HE²RO), is taking a proactive approach. They’ve launched a social media campaign, spearheaded by short, engaging TikTok videos, designed to “pre-bunk” misinformation about LEN. Much like a psychological vaccine, these videos aim to equip audiences with the mental tools to recognize and discredit potential falsehoods before they take root. Brendan Maughan-Brown, the lead researcher, emphasizes the urgency of this moment, highlighting that the window to get ahead of misinformation is open right now.
Our own research, published earlier this year in BMJ Global Health, delves into the kinds of concerns and false claims that are already circulating about future HIV prevention tools. We identified recurring narratives: that prevention methods are designed to harm specific populations, that they cause the very conditions they’re meant to prevent, and that their awful side effects are being deliberately hidden. Intrigued, we conducted an online survey, presenting 188 young South African women with 54 various misinformation claims. What we discovered was surprising. We anticipated that widespread conspiracy theories—like the idea that a foreign government engineered an HIV vaccine to sterilize Black women—would be the most impactful. Instead, it was fears of immediate, catastrophic physical harm that resonated most deeply. Claims like “it will kill you,” and warnings about liver, kidney, or heart failure, bone marrow damage, and cancer, topped the list of concerns. These findings align with a broader pattern we’ve observed in this age of vaccine hesitancy, exacerbated significantly during the COVID-19 pandemic. Safety concerns were a primary reason for COVID-19 vaccine refusal, with nearly 40% of the most hesitant in South Africa believing it could be fatal. This fear is understandable; when millions are vaccinated in a short span, some unrelated deaths will inevitably occur coincidentally, and these coincidences become stories. Stories become social media posts, shared and amplified through personal connections, becoming un-unhearable. Once misinformation takes hold, it’s incredibly difficult to undo, even with repeated debunking. Our brains are wired to process stories and emotional experiences far more powerfully than logical rebuttals. A vivid, frightening claim sticks in our memory in a way that a later correction simply cannot displace.
LEN, despite its immense potential, has certain characteristics that make it particularly vulnerable to misinformation. One significant concern is the likelihood of it being mistaken for a vaccine. After all, it’s an injection taken to prevent a disease, so it’s easy to see why people might make that connection. However, LEN is a form of PrEP (Pre-Exposure Prophylaxis), and its mechanism of action is fundamentally different from a vaccine. A vaccine trains your immune system to produce antibodies, building long-term protection, whereas PrEP actively blocks HIV from entering your cells and remains effective only as long as it’s consistently taken. This distinction is crucial, as existing misinformation about vaccines in general could easily be layered onto misconceptions about LEN, creating a compounded storm of false information. Another feature that makes LEN especially susceptible to exaggeration and misleading narratives is a potential side effect: the injection can sometimes result in a visible nodule or bump under the skin. While most drug side effects are internal and unseen – a headache, a bout of nausea – this one is tangible, photographable. This visibility presents a genuine concern, as images of these nodules could circulate online, accompanied by alarmist captions and unfounded implications that bear no relation to clinical reality. Misinformation thrives on a kernel of truth, and a visible lump under the skin is dangerously close to a perfect hook for spreading fear.
Recognizing these vulnerabilities, our team decided to test an approach called psychological inoculation, or “pre-bunking,” to make people more resilient to misinformation. We initially focused on a hypothetical HIV vaccine because, at the time, it didn’t exist, and misinformation about it was nascent, not yet ingrained in public consciousness. Our approach mirrors medical vaccination: exposing people to a weakened “dose” of misinformation. We achieved this through humorous TikTok-style videos that presented false claims in a discrediting context, followed by clear explanations of the manipulative strategies behind such misinformation. The goal is to build “cognitive antibodies”—mental tools that empower individuals to recognize and counter false information before they encounter it in the real world. In collaboration with Reel Epics, we co-created these 2.5-minute videos in workshops with young women from an HIV service delivery organization. Their candid feedback was invaluable; they bluntly told us our initial scripts needed to be “de-Harvardized,” stripped of academic jargon if they were to capture anyone’s attention beyond the first five seconds.
The results of a trial with over 2,000 young South African women (aged 18-29), currently under peer review, were incredibly promising. Participants who watched our pre-bunking videos actually showed increased intentions to accept an HIV vaccine even after being exposed to misinformation. In stark contrast, those who saw the misinformation without the pre-bunking videos reported intentions that were 13% lower. Crucially, the pre-bunking videos also made participants less likely to share misinformation if they encountered it on social media. The videos not only reduced the credibility of the specific false claims they directly addressed but also diminished the perceived trustworthiness of other, different pieces of misinformation. Even three weeks later, the group that watched the pre-bunking videos continued to report higher intentions of getting an HIV vaccine compared to those who hadn’t seen them. What’s even more significant is that these videos were most impactful among participants who had not received the COVID-19 vaccine—a group often characterized by higher vaccine hesitancy and, therefore, more susceptible to misinformation. These are precisely the individuals who most need support to ensure their decisions about LEN are not swayed by misleading or false information.
Based on these compelling results, we have already adapted our videos specifically for LEN, employing the same persuasive framework and engaging format. These videos are now being shared by organizations promoting LEN and are freely available for anyone to use. We are also embarking on a new study, specifically focusing on LEN misinformation, to expand our findings to a more diverse socioeconomic demographic. While two short videos, no matter how well-crafted, cannot single-handedly solve a widespread misinformation crisis, they represent a crucial step. Scaling this intervention to reach the women who most urgently need LEN—those in communities where health conspiracy theories have deep roots, those less connected to digital platforms, and those whose decisions are shaped by their immediate social networks—will require substantial investment and coordinated effort. The Department of Health, various NGO partners, and community health workers all have vital roles to play. It’s imperative that everyone recognizes the urgent need to act now and proactively confront the threat of misinformation before it goes viral. I firmly believe that misinformation poses one of the greatest public health threats we will face in the coming decade. It doesn’t emerge after a product is launched; it germinates and grows in the space between excitement and access, between announcement and widespread adoption. The window for pre-bunking—for inoculating against false claims before they become entrenched—is wide open right now, and we must seize this opportunity to protect public health and ensure LEN fulfills its potential to end the HIV epidemic.