Ugandan study finds many are willing to start PrEP but stop it soon after

25 September 2020

Study among fisherfolk, sex workers, truck drivers and others at higher risk of HIV finds many are willing to try PrEP – but only for around six weeks.

Image of a migrant fishing community, Lake Victoria, Uganda

Research from south-central Uganda where HIV prevalence is persistently high has found more than 90% of study participants were willing to try PrEP, but most only took it for around six weeks.

Fisherfolk, sex workers, truck drivers and adolescent girls were all likely to take PrEP for a short time only, despite being at increased risk of HIV. HIV‐negative people in a relationship with someone living with HIV (discordant couples) were found to be more willing to take PrEP for longer.

The study evaluated PrEP uptake and retention between April 2018 and March 2019 in government-run clinics serving fishing communities around Lake Victoria and trading centres in the south‐central districts of Rakai, Kyotera, Masaka and Lyantonde. All areas are considered hyper-endemic for HIV due to high prevalence rates.

Target groups for PrEP included fisher folk, sex workers, truck drivers, discordant couples, men who have sex with men, and adolescent girls and young women (15 to 24 years).

A total of 2,750 people who were screened for the study were eligible to use PrEP and 92% began taking it.

Among men, those who took up the offer of PrEP were mainly fisherfolk (48%) and truck drivers (36%) and approximately half were married. Among women, PrEP users were mainly sex workers (83%), and roughly one in five were married. Most PrEP users were aged 20 to 29.

Overall, fisherfolk – both male and female – were less likely to take up the offer of PrEP than HIV‐discordant couples and other women. Acceptance of PrEP did not differ significantly by age or marital status.

All those taking PrEP were asked to return to clinics at one, three, six, nine and twelve months after enrolment for refills, adherence counselling, HIV retesting, assessment of HIV risk (including STI screening) and monitoring of side effects.

But most did not reach the three-month mark as the median time for PrEP use was 45 days – approximately 6.5 weeks – for both men and women.

Men were more likely than women to stop using PrEP.

Among women, sex workers and fisherfolk were more likely to stop using PrEP than those in discordant couples. This was similar among men, with both fisher folk and truck drivers more likely to stop using PrEP than men in discordant relationships.  

Women aged 30 to 34 tended to have lower discontinuation rates than adolescents aged 15 to 19.

When people in the study began using PrEP they were not asked where they would prefer to get refills from or whether they felt stigma associated with PrEP use, so it is not known whether these factors influenced people’s decisions to stop using it. The need for people to take an HIV test to get a PrEP refill may have also discouraged people from continuing use, but whether this was a factor or not fell outside the remit of this study.

Despite these limitations, these findings are consistent with earlier studies, indicating that being part of a highly mobile population or being a sex worker may prevent people from staying on PrEP. Programmes tailored to meet the needs of both groups are needed to address this. Further research is also needed to establish why people from these high-risk groups stop using PrEP, even when their risk of getting HIV is unlikely to have diminished.

Written by Hester Phillips