Transforming HIV Prevention: The Role of Adaptive, Stigma-Free Communication
by Laura Ramos Tomás
At the HIVR4P 2024 conference, discussions extended beyond innovative HIV prevention options to explore the essential role that choice—that is, a person’s ability of selecting from different options— plays in ensuring access to care.
Communication was identified as a key factor that can either facilitate or hinder people's ability to choose the prevention methods that work for them. As experts across different sessions emphasized, the way we talk about HIV prevention must be adaptive, inclusive, and centered around the needs of the community.
Adaptive Communication for Diverse Needs
One of the core messages at the conference was the need for adaptive communication in HIV prevention. Anja Van der Westhuizen (IAVI, South Africa) emphasized this in the session on Leveraging SBR to Engage and Empower communities in HIV Prevention Research, calling attention to the biases and assumptions that researchers, policymakers, and implementers often bring to their work. She noted:
"The messaging was hard to develop because we didn't know what people knew, and we also came in with assumptions about what it is that people want to know. Don’t make assumptions about where you think they are, and try to figure out what it is that they want to know."
She underscored the importance of community-driven messaging. Communication should not be imposed from the top down but developed in collaboration with those directly impacted by HIV prevention efforts.
Broadening the Delivery of HIV Prevention
Dr. Vanessa Apea (UK), in the CentHERing HIV Prevention: HER Voice Matters session, argued for moving beyond traditional medical settings to make HIV prevention more accessible and appealing to women:
"We want to be able to move women from just accessing prevention, to prevention actually becoming desirable to them. If we really want to create a prevention infrastructure that meets people where they are, we need a different system."
Apea highlighted the need to broaden the remit of who delivers HIV prevention services. In addition to medical personnel, she suggested that nurses, health advisers, pharmacists, sexuality educators play an essential role. This approach ensures that prevention services are delivered in safe and comfortable spaces, where women feel represented and supported.
Speaking the Communities’ Languages
Effective communication also involves speaking the language of the communities we seek to reach. In the session on Driving PrEP implementation through community-engaged science, Esther Nakkazi (Uganda), a science journalist, pointed out that not all terms used in HIV prevention efforts translate easily into local languages. She explained:
"Some terms migrate seamlessly into local languages, but others need translation or explanation to help people fully understand what terms actually mean and what researchers, policymakers, and others are saying."
Kashma Goya (DCT Mindlinks, India) echoed this sentiment, emphasizing the importance of simplifying and de-jargonizing the science:
"We must simplify and de-jargonize the science, use de-medicalized language that is simpler to understand for communication, and thus leverage the lived experiences of the community so we can use what they know to help understand what they don’t know."
By using familiar metaphors and cultural references, communicators can help bridge the gap between complex scientific concepts and everyday understanding.
Acknowledging the Whole Person
HIV prevention messaging should recognize the broader social and health needs of the individuals it seeks to reach. Jerop Limo (AYARHEP, Kenya) raised this point in the Social Determinants of Health and PrEP Outcomes session, stating:
"Sometimes just teaching people about HIV is too bulky, it’s too much. HIV is not my only problem. It’s really thinking about how you can intersect all the different aspects."
Similarly, Dr. Rayner Kay Kin Tan (National University of Singapore, Singapore) called for a more person-centered approach to HIV prevention, particularly when addressing the complexities of chemsex. He noted that we often focus too narrowly on biomedical risks, such as HIV and STIs, without considering the social, historical, and political dimensions that contribute to the use of substances in sexual contexts.
Moving Beyond Risk-Based Communication
Language shapes how people perceive themselves in relation to HIV prevention services. Sarit Golub (Hunter College and Graduate Center, USA), in the Reducing Burdens and Barriers to Expanding HIV Prevention Options session, criticized the over-reliance on risk-based language:
"This type of language results in de-identification and distancing from HIV services because nobody identifies as high-risk, and nobody goes out on Saturday night to have risk behavior."
By shifting away from risk-focused narratives, we can frame prevention efforts in a way that empowers individuals and makes them feel more connected to the services available to them.
Making Prevention Appealing
Yvette Raphael (South Africa) emphasized the need to make HIV prevention not just accessible but desirable for women. Drawing on the success of PrEP in the MSM community because of its association to taking it for want of sexual activity, Raphael explained:
"We need to make HIV prevention for women sexy, and I cannot say that enough. To make it cool, and to make it part of our lifestyles."
Prevention messaging should not be about fear or stigma but about creating a positive and empowering narrative that encourages women to take charge of their health.
Useful and Necessary Approaches to Improving Messaging
The conversation went beyond addressing key matters in effective communication around prevention, to also suggest several useful and necessary approaches for improving messaging:
Social Behavioral Research (SBR): SBR plays a crucial role in understanding end-user perspectives and tailoring communication strategies for specific populations. As Yvonne Machira IAVI, Kenya) explained, you can’t use a one-size-fits-all approach for different audiences. Anja Van der Westhuizen (South Africa) referred to SBR as “research literacy for researchers,” helping professionals develop more resonant messaging. However, Ken Odeng’e (Kenya) highlighted the challenges SBR faces, noting the perceived hierarchies of evidence that often favor biological sciences over behavioral research, which leads to SBR being deprioritized.
Pleasure-based sexual health interventions: Anne Philpott (UK) from The Pleasure Project presented the Pleasure Principles as operational guidance for incorporating pleasure into sexual health interventions.
Goals Approach for sexual history taking: Sarit Golub (USA) proposed the Goals Approach, which uses gender-affirming, anti-stigmatizing, and trauma-informed language for sexual history conversations.
Best practices for public health messaging: Michael Stirratt (USA) shared the best practices from the NIH's Communicator’s Tip Sheet for Covid-19 Vaccination, which can be applied to HIV prevention messaging.
Conclusion: Toward a Collaborative Future in HIV Prevention
The discussions at HIVR4P 2024 underscored that while scientific advancements in HIV prevention are essential, they must be paired with effective, adaptive, and inclusive communication strategies to drive real uptake and scalable impact. To create stigma-free prevention services, it is vital to leverage behavioral science to develop messaging that speaks to the whole person, not just their HIV status, with a focus on pleasure-based, person-centered care.
By tailoring messages to the specific needs of each community, using accessible language, and moving beyond risk-based narratives, we can empower individuals to take ownership of their sexual health. HIV prevention should not be solely about risk mitigation—it must be an empowering and desirable choice for all.
As the conference emphasized, achieving this vision requires a collaborative effort between communities, researchers, healthcare providers, and policymakers. Together, they can build a future where communities are not just passive recipients of information but active participants in shaping the prevention, care, and wellbeing initiatives that directly impact their lives.