Diantha Pillay of South Africa’s Wits Reproductive Health
and HIV Institute presented in-depth qualitative findings from FSWs and MSM who
took PrEP up till June 2017 at nine of the 16 PrEP implementation sites that
were open at the time.
The researchers selected 299 FSWs, MSM and general-population members
from clinic attendees. Firstly, they excluded people who had never heard of
PrEP. PrEP knowledge was widespread among FSWs and MSM: only seven sex workers
(4.5%) and three MSM (3.75%) had never heard of it. Among the general
population members selected, 46% had never heard of it.
Among the 260 people who had heard of PrEP, 94 were currently using it,
80 had used it but stopped, and 86 had never used it.
The survey showed that even in these PrEP
implementation sites, not everyone was being offered PrEP who might take it.
Among those who had never heard of PrEP, nearly half (45%) of FSWs had never
been offered it, two-thirds of MSM, and three-quarters of the ‘other’ group.
The most common reason for wanting to start, or to continue, PrEP was
that the person was sexually active; “HIV risk” was less often cited as a
reason to take PrEP among the MSM and other categories, though it was cited
just as often among the FSW.
Among those who had stopped PrEP, side-effects were by far the most
common reason to stop among FSWs and MSM: three-quarters of FSWs and 87% of MSM
said that side-effects including gastro-intestinal upset, nausea, dizziness and
headaches were their main reason for stopping. In contrast, among the ‘other’
category, the most common reason for stopping PrEP was that people felt
stigmatised by it.
Among these past users, 83% said side-effects had affected their daily
lives and even among current users, 59% said they had experienced them and 31%
said they affected their daily lives.
Diantha Pillay commented that although a majority of PrEP users
recalled being told about side-effects in pre-PrEP counselling sessions, only a
minority received advice on how to manage those side-effects.
Back in Kenya, Jordan Kyongo of the Nairobi-based HIV organisation LVCT Health
concurred that side-effects were one of the most common reasons for
A 2015-2017 PrEP demonstration project was based in the cities of
Kisumu and Homa Bay on Lake Victoria and in the capital Nairobi. It enrolled
796 FSWs, 597 MSM and 723 general-population young women.
Although, in a 2013 feasibility study, 85% of potential participants had said
they would use PrEP, 25% of those screened for PrEP never turned up for their
initial PrEP prescription appointment (34% of FSWs). But what was really
striking was the drop-out rate in the first month. Forty per cent of FSWs
prescribed PrEP never turned up for their second prescription, 55% of MSM and
fully 70% of general-population young women.
The drop-out rate continued and by the six-month appointment, out of
those initially screened, only 14% of FSWs, 15% of MSM and 10% of general-population
young women returned for their next PrEP prescription.
Side-effects were the most commonly cited reason for dropping out. PrEP
takers complained of “‘nausea’, ‘headaches’, ‘constant dizziness’,
‘running stomach’, ‘darkening of the skin’, ‘weight gain’ and ‘loss of
appetite’”. “I took the bottle halfway due to the side effects,” said
one young woman.
Real side-effects reinforced, and imaginary ones might be induced, by
community beliefs about PrEP, such as it causing impotence or sterility or
being a population-control measure.
The second most common reason for PrEP drop-out was stigma ranging in
its manifestations from social disapproval to violence. One woman said: “When
I informed my husband, he refused and told me that he should not find me using
it. So I started taking the drug in secrecy. When he came to know about it,
when he saw that bottle he beat me to an extent of breaking my nose”.
Practical reasons such as transport difficulties were also often given.
Reasons for continuing included wanting to maintain a positive
relationship with the healthcare worker and a perception that one could not
rely on people’s declaration of this HIV status: one FSW said: “Because
of having multiple partners and having unprotected sex you do not
know their status; like even those four, I only knew status of
one person and they do not want to come to the clinic to test”.
described himself as “a PrEP researcher and advocate,” said that it was
important to take account of the context of PrEP use and to keep in mind that
PrEP was a choice: “The
end game is HIV prevention, not PrEP use,” he said.
He continued: “The right people on PrEP are the people who want
to be on it. If I want to be on PrEP, let me. If I want to take it for a month
then stop, let me; from the point of the user, it is not like taking medicine,
it is much more like using a condom. And if I don't want to take PrEP, don't
tell me I should because I'm 'at risk'."