'I thought it wouldn't happen to me': why HIV prevention is not reaching everyone yet

The number of new HIV diagnoses in Belgium has been rising for four years (Sciensano), despite the availability of effective HIV prevention tools. Researchers from the Institute of Tropical Medicine (ITM) interviewed people who were recently diagnosed with HIV to understand where the missed opportunities for HIV prevention lie, particularly regarding PrEP (medication that can prevent HIV infection). Their testimonies show that a lack of knowledge, stigma and inequality are still major barriers. The researchers have formulated eight recommendations to make HIV prevention more accessible.

"We see very diverse stories in our HIV clinic," says Thibaut Vanbaelen, physician at ITM. "Many people are positive about PrEP, but the road to get it is not so straightforward for everyone. Prevention goes beyond availability alone."

From personal doubts to structural exclusion

People do not take up PrEP or other HIV prevention tools for many different reasons. "Some don’t know about PrEP or don’t see themselves as being at risk — for example, people who do not identify with high-risk groups, such as men who identify as heterosexual, or young people for whom HIV seems less threatening," says Gert Scheerder, researcher at ITM’s Unit of Sexual Health including HIV. "People in precarious situations may perceive prevention as less of a priority, while others hesitate because of the cost or possible side effects."

Interpersonal dynamics also play a role. Talking about condoms or PrEP remains difficult, often due to shame or fear of rejection. "Among some men who have sex with men (MSM), we see that partners do not make clear agreements about protected sex outside their relationship, so they may be less aware of the risk," Scheerder explains. In addition, sex under the influence of drugs (as in chemsex) can increase risk.

Obstacles also arise within the healthcare system. Not all GPs or care providers initiate conversations about PrEP, meaning that some people are not aware that it exists or that they are eligible. In cooperation with Domus Medica, UZ Gent and Sensoa, ITM developed an e-learning module with basic information about PrEP and guidance on how healthcare providers can discuss it.

Finally, people without Belgian health insurance do not have access to PrEP. "This is a major barrier for vulnerable groups, such as MSM with a migration background. Especially when they are new to Belgium, they are often unfamiliar with the healthcare system," Scheerder adds.

The study

For the study, ITM interviewed 21 people who were diagnosed with HIV in the past year and are patients at the institute’s HIV clinic. The interviews explored their knowledge of and attitudes towards PrEP, their perception of risk, and the circumstances surrounding their diagnosis.

The study was funded by the Fonds Wetenschappelijk Onderzoek (FWO) and Antwerp Diner.