The contingency of PrEP engagement: perspectives of underserved populations in the United Kingdom in the PrEP-Position mixed-methods study
This mixed-methods study reveals that underserved populations in the UK, particularly racially minoritised groups and sex workers, face significant barriers to PrEP access due to low awareness and a strong preference for long-acting injectable options delivered through general practice rather than specialist services, highlighting the urgent need for equitable, identity-responsive implementation strategies.
Original paper licensed under CC BY 4.0 (https://creativecommons.org/licenses/by/4.0/). This is an AI-generated explanation of the paper below. It is not written or endorsed by the authors. For technical accuracy, refer to the original paper. Read full disclaimer
Imagine a shield designed to stop a virus before it can take hold. For years, this shield has been available in the United Kingdom, but it has largely been kept behind a locked door, accessible only to a specific group of people who visit specialized clinics. The shield is a daily pill that prevents HIV infection, a virus that attacks the immune system. While the pill works incredibly well when taken every day, many people who could benefit from it have never heard of it, or they feel it was never meant for them. This disconnect is not just about a lack of information; it is about how the shield has been presented, where it is offered, and whether people feel they belong in the room where it is discussed.
A new study, conducted by researchers working closely with community groups across the United Kingdom, set out to understand why this shield remains out of reach for so many. The researchers focused on populations that have been systematically overlooked, including women from racially minoritized backgrounds, transgender people, sex workers, and heterosexual men from diverse ethnic communities. They wanted to know if these groups were simply unaware of the prevention tool, or if the way it was offered made it impossible for them to use. By listening to the stories of hundreds of people and asking them direct questions, the team uncovered a landscape where the solution exists, but the path to it is blocked by cultural assumptions, structural barriers, and a delivery system that does not fit the lives of those who need it most.
The researchers began by gathering a large group of people from these underserved communities. They spoke with 264 individuals through an anonymous online survey and conducted in-depth, private conversations with 38 of them. The goal was not just to count who knew about the pill, but to understand the complex web of identity, daily life, and social pressure that shapes a person's decision to use it. They found that the problem was not a lack of interest. In fact, among those who knew about the prevention option, a significant number were already using it, or wanted to. However, a large portion of the group had never heard of it at all. This lack of awareness was most common among cisgender women from racially minoritized backgrounds and heterosexual men, while gay and bisexual men from similar backgrounds were much more likely to know about it. This gap suggests that the message about the shield has not reached everyone equally.
When the researchers asked people about their preferences, a clear picture emerged of what would actually work for them. Many people expressed a strong dislike for the idea of taking a pill every single day. The burden of remembering to take a dose, the fear of being seen with the medication at home, and the side effects of the pill made it an unattractive option for nearly half of the respondents. Instead, there was a powerful desire for a long-acting injection, a shot that would protect them for two months at a time. This preference was especially strong among sex workers and heterosexual men from racially minoritized backgrounds, where nearly all participants said they would choose the injection over the daily pill. The injection offered a sense of freedom from the daily routine and, crucially, a way to keep their prevention choices private from family or community members who might judge them.
The study also revealed that where people get their healthcare matters just as much as what they get. For many, the specialized sexual health clinics where the pill is currently offered felt intimidating, stigmatizing, or simply too far away. These clinics are often associated with specific communities, and people from other backgrounds felt they did not belong there. Instead, many participants said they would feel much more comfortable getting their prevention through a general practice doctor or a local pharmacy. These are places they already visit for other health needs, places where they feel recognized as regular members of the community rather than as patients with a specific, stigmatized condition. The researchers found that for some, the fear of being seen entering a sexual health clinic was a barrier so strong that it stopped them from seeking help entirely.
Beyond the logistics of pills and clinics, the study highlighted how deeply personal and social factors influence engagement. For some, religious beliefs or cultural norms created a moral barrier, making them feel that using the prevention tool was an admission of behavior they were not supposed to engage in. For others, the dynamics of their relationships played a huge role. Some people stopped using the protection once they entered a monogamous relationship, viewing it as a sign of trust, while others started using it when they entered open relationships to protect themselves and their partners. The research showed that these decisions were not made in a vacuum; they were shaped by power dynamics, the fear of intimate partner violence, and the need to manage privacy within their own homes. For transgender individuals, the lack of inclusive care and the fear of discrimination in medical settings created additional layers of difficulty, making the standard system feel hostile and unwelcoming.
The researchers concluded that simply making the pill available is not enough. The current system, built around a daily pill and specialized clinics, was designed for a specific group of people and has failed to adapt to the diverse realities of the wider population. The study suggests that to truly protect everyone, the system needs to change. It needs to offer long-acting injections that fit different lifestyles, and it needs to bring prevention services into everyday places like local doctors' offices and pharmacies. It also needs to change the conversation, moving away from stereotypes about who needs protection and toward a message that recognizes the diverse lives and relationships of all people. The shield is there, but for it to work, the door must be opened wider, and the path must be made clear for everyone who needs to walk it.
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