Why people in Kenya quit PrEP

In-depth interviews with people who had accessed pre-exposure prophylaxis (PrEP) from public HIV clinics in central and western Kenya have explored why people choose to stop taking PrEP.

The people interviewed had all stopped using PrEP after six months and had not discussed their reasons with the clinic. The average age of interviewees was 32 and 65% were women.

In the interviews people were asked to give their main reason for stopping PrEP, yet most people mentioned a number of things that influenced their decision.

About half had stopped taking PrEP because they felt their personal risk of getting HIV had fallen, either because their relationship (with someone who had either an unknown or positive HIV status) had ended, or because they were geographically separated from their partner. A few participants had stopped taking PrEP because their partner, who was living with HIV, had become virally suppressed meaning they could no longer pass HIV on.

Some people stopped because of HIV-related stigma. Many said they did not want friends or family seeing them taking pills every day, as they would be ‘suspected’ to have HIV.

Around one-fifth of interviewees (mostly women) said their partner was strongly against them taking PrEP, which is why they stopped. This opposition was usually communicated verbally, but in a few cases partners had been physically abusive. Some people said they wished healthcare facilities would communicate with their family, partners and friends so they better understood what PrEP is.

Interviewees often mentioned the inconvenience of visiting HIV clinics as being a reason they were discouraged from taking PrEP, although few said this was their main reason for stopping. People were put off by the distance they needed to travel to get to the clinic, opening times and short refill lengths - which meant they had to make more frequent clinic visits. Other people said they felt uncomfortable getting PrEP from an HIV clinic in case they were mistaken for someone living with HIV.

Some interviewees said they would be interested in restarting PrEP if they could get it from HIV clinics, general health facilities or pharmacies that were closer or open for longer. Changing these practical things could improve PrEP access. People can now access antiretroviral treatment for HIV in community-based settings and multi-month prescriptions are allowed. Similar changes should be considered for PrEP.

Many interviewees reported side effects from PrEP, such as nausea and dizziness. Although this discouraged use, side effects were never the main reason for stopping PrEP. Some people found taking a daily pill too must of a burden and opted to use condoms for HIV prevention instead.

Most interviewees said they were willing to restart PrEP if they found themselves in situations where they felt they were more at risk of contracting HIV, or if PrEP could be accessed more conveniently. 

Although most felt they did not need to get approval from clinics to stop taking PrEP, a few were worried that clinic staff would reprimand them for stopping PrEP if they returned to the clinic and asked to start taking it again.

This study only reflects the experiences of one group; namely heterosexuals who were willing to get PrEP from a public HIV clinic in Kenya. The experiences of other people who have stopped taking PrEP will not necessarily be the same. Despite this, the study is important because it gives the views of people who have actually accessed PrEP at a public health clinic, rather than as part of a research project. 

The findings show that people are already making decisions about PrEP based on their perception of personal HIV risk. It is important for PrEP counselling to address people’s perceptions of HIV risk to ensure they have the information they need to make informed decisions as their circumstances change. Stronger and more widespread ‘sex-positive’ messaging about PrEP, could also help address some of the stigma that put some people off continuing to take PrEP.