Behind the Paper: Beyond the pill: Understanding barriers and enablers to oral and long-acting injectable PrEP among women in sex work in Zambia

In this post, we talk to the authors of the recently published paper, Behind the Paper: Beyond the pill: Understanding barriers and enablers to oral and long-acting injectable PrEP among women in sex work in Zambia by Ramya Kumar, Chisomo Mwale, Patricia Maritim, Jamia Phiri, Wendy Barrington, Ruth Zyambo, Martin Zimba, Kenneth Mugwanya, Michael Herce, Maurice Musheke, Deepa Rao, and Anjali Sharma

What led you to decide on this research question?

There have been major investments in PrEP, but women in sex work still faced barriers that had little to do with willingness, and everything to do with stigma, access, and trust. We wanted to understand why starting and staying on PrEP stayed low, especially as Zambia was an early adopter of long-acting injectable PrEP.

Could you talk us through how you designed your study? What was important for your team as you created the study team?

It was important to our team that we collaborated with the community in how we designed and implemented this study. For more on the community engagement process read the parent study.

We partnered with sex worker-led organizations (Zambia Sex Worker Association and Tithandizeni) from the outset to ensure the study was shaped by, and accountable to, those most affected. The district health specialists who work with key populations, as well as implementing partners like Centre for Infectious Disease Research Zambia (CIDRZ), also served on the community advisory board.

This study is part of a larger mixed-methods parent study, which combined quantitative stigma scales with qualitative narrative interviews to capture both the prevalence and complexity of stigma. The present paper reports on the qualitative strand. We drew on the COM-B behavioral science framework to guide our analysis and conducted interviews with women who had started, discontinued, or continued using PrEP to explore the full spectrum of experiences.  We also interviewed peer health navigators who are at this unique interface of being both a receiver of services, as well as a provider.

What challenges did you encounter during your study?

Mistrust, understandably so.

Our participants were women newly engaging with HIV prevention services, many of whom had experienced extractive or dismissive encounters with researchers and providers. Building trust required time, transparency, and reciprocity. We met people where they were at: offering HIV testing in brothels, distributing condoms and lube in homes of a ‘Queen Mother.’ We showed up consistently.

For many collaborators, this was the first study that treated them not as assistants but as co-producers of knowledge. Trust was not assumed; it was earned. We moved at the speed of trust, and that ethos shaped both the process and the findings.

What did you find most striking about your results? How will this research be used?

The biggest surprise was how much women wanted PrEP to protect themselves from being infected with HIV, but daily pills, stigma, side effects, and inconsistent supply got in the way. Our findings are already shaping how peer-led HIV prevention is delivered, especially as Zambia continues to make injectable PrEP available.

What also stood out was how profoundly structural stigma shaped women’s risk environments, from nurses at public clinics refusing them care, even when they came with wounds from being beaten. These insights are now informing targeted training for providers and community-led advocacy to shift narratives around HIV prevention and sex work.

What further research questions need to be addressed in this area?

How do we ensure a steady supply of injectable PrEP, especially for women who move a lot or work unpredictable hours? And what models of care, beyond the clinic, actually support women to stay protected?

Why did you choose PLOS Global Public Health as a venue for your article?

Because the PLOS Global Public Health walks the talk on equity and open science. We wanted the communities who trusted us with their stories, and the people designing programs to have full, free access to these findings. PLOS GPH editorial values align with our goal of making sure research is accessible to both activists and policymakers, not just academics.