Qualitative interviews from an already published placebo-controlled study of 66 men who have sex with men (MSM) and five female sex workers (FSWs) in Kenya who took tenofovir/emtricitabine (Truvada)-based pre-exposure prophylaxis (PrEP) found that participants found PrEP generally acceptable and easy to take.
However, it also discovered that participants had significant concerns about stigma and gossip. In addition, they experienced practical difficulties such as being away from home; those who took an intermittent dose found it hard to take the post-sex dose which was part of this regimen.
Background: the study
The study’s adherence and safety data have already been published (Mutua – see this report on aidsmap). In brief, adherence measured by self-report and electronic medicine-bottle monitoring was high (83%) in people who took daily Truvada but was only moderate (55%) in people who took it intermittently: the intermittent regimen involved taking Truvada every Monday and Friday and taking a dose two hours after having sex, and only 23% of participants managed to take the post-sex dose..
Taking PrEP was highly acceptable: 83% of participants said they would be willing to take Truvada as PrEP if it was shown to be safe and effective and was inexpensive or free. There were only a handful of adverse events thought to be related to the study drug. Adherence was as high in people taking Truvada as in those taking a placebo. Reported sexual risk behaviour did not increase or decrease significantly during the study.
Qualitative study: focus groups and interviews
Seventy-one per cent of participants (51 people) also took part in focus group discussions; groups were balanced so that people who had poor, moderate and high adherence were equally represented. All five FSWs and 70% of the MSM were represented. In addition, people who left the study early or had less than 50% adherence reported were invited in for an individual interview, with no obligation to participate.
Participants thought PrEP was potentially a good prevention method:
“If PrEP really prevents HIV then it should be available in plenty so it may help us.”
“It is a good idea for people like us who have multiple partners, because some will accept condoms and others not.”
Many people experienced side-effects at first, but these usually resolved:
“When I swallowed them, I had diarrhoea for three days, then my head started aching. When I called [the study centre] they told me to come, but after three days I was OK.”
Some people even perceived that the Truvada had positive effects, such as a subjective experience of increased sex drive:
“It was good, because when you go home, you feel like making love to your friend. But when I stopped taking the pill, that morale faded.”
Stigma and false assumptions
However, people were concerned that if they were seen taking PrEP, people might conclude they had HIV:
“The colour should be white. When people see you are using a blue pill...they start thinking you have HIV.”
Wanting PrEP pills to be clearly distinguishable from treatment ARVs was quite a common request.
Participants expressed a preference for intermittent dosing but in practice found this much more difficult to adhere to. This was mainly because people fell asleep after sex:
“Sometimes you come from a date in the morning at 5am, you go to sleep and the time passes by...”
“Two hours should be extended to 4-6 hours since after sex one relaxes and may oversleep.”
Sex, drink and drugs
The most common comments, though, concerned stigma, and how to explain PrEP to family and friends:
We were informed about the challenges about the use of this drug but not the challenges to deal with the family while participating in research.”
The most common single concern was that others would assume that the person taking PrEP had HIV, an assumption that turned out to be true in a number of cases:
“My friends would ask if I were using ‘njugu’ [slang term for antiretrovirals] and in the end I gave up and said I was.”
“My wife would question why I take drugs daily wanting to know if I was sick. She was shocked and confused, and got wrong information from friends. I think that is the reason she left me.”
In one case, a participant said he had to go to a centre and get tested for HIV with his girlfriend before she would believe the drugs he was taking were for a study.
This study, the researchers comment, “suggests the need to understand and respond to the acceptability of PrEP not only among users but among members of their social networks.
“These themes were particularly prominent in participants with low adherence or who discontinued the study, suggesting that these social factors may play a major role in both adherence and acceptability.”
The study leaves unanswered, they stress, the question of whether oral PrEP can work in ‘real-life’ settings:
“Participants highlighted a number of creative and commonplace strategies to help them adhere to their assigned dosing regimen. The feasibility of doing so within the confines and conditions of everyday life as opposed to a controlled and consistent intervention such as the PrEP trial remains unclear.”
Van der Elst EM et al. High acceptability of HIV pre-exposure prophylaxis but challenges in adherence and use: qualitative insights from a phase I trial of intermittent and daily PrEP in at-risk populations in Kenya. AIDS Behavior 17(6):2162-2172, 2013.
Mutua G et al. Safety and Adherence to Intermittent Pre-Exposure Prophylaxis (PrEP) for HIV-1 in African Men Who Have Sex with Men and Female Sex Workers. PLoS ONE 7(4): e33103. doi:10.1371/journal.pone.0033103, 2012.