Kenyan people living with HIV perceive antiretroviral
therapy to be something that is taken in the final stages of the disease, at
the end of life, which creates an additional barrier to the early initiation of
therapy, according to a qualitative study published online in the journal AIDS.
While participants expressed a willingness to consider
treatment at CD4 cell counts above 350 cells/mm3, they also
expressed concerns about treatment side-effects, the challenge of lifelong
adherence and the impact of social stigma – themes which are familiar from
other studies of treatment initiation in African settings. Moreover, starting
treatment would mark a transition from a normal life to a terminal illness, the
beginning of ‘the last lap’.
Unless this perception is reframed, implementation of World
Health Organization guidelines which recommend HIV treatment for all people
with a CD4 cell count above 500 cells/mm3 and all people living with HIV
who are in a ‘serodiscordant’ relationship (i.e. with an HIV-negative person) will be challenging. Of note, the Kenyan research was conducted with members of
In 2012, investigators recruited people living with HIV
who were married to an HIV-negative person to take part in focus group
discussions and one-to-one interviews. Their HIV-negative partners also took
part in separate focus groups and interviews, although the majority of comments
cited by the researchers come from the HIV-positive partners.
A total of 68 individuals took part (evenly split between
HIV-negative and -positive partners). The median age of the HIV-positive women
was 29.5, with the HIV-positive men somewhat older at 42. Most couples had
children. The research site was in a periurban and farming community around 25 miles
from Nairobi, Kenya.
Most HIV-positive participants had CD4 cell counts well
above 350 cells/mm3 and were not taking treatment. Towards the
beginning of focus groups, the facilitator described the HPTN 052 study
results, including the prevention and clinical benefits demonstrated, and asked
about attitudes toward starting antiretroviral treatment early.
Most participants expressed interest in the concept. While
almost all HIV-negative respondents were in favour of their partners starting
treatment early, the primary motivation appeared to be the preservation of
health, rather than reducing the risk of transmission.
“You should start ARVs
immediately so that your CD4 can be maintained there. Because this issue of
waiting until the CD4 goes down, the body loses its strength.” (HIV-positive
Some individuals suggested that if they started therapy
while still in good health, they could avoid their HIV status being revealed
through opportunistic infections.
“I have never been sick, if I start now there
is no way that people will ever come to know the way I am… It is good to start
early.” (HIV-positive woman).
But HIV treatment also had the capacity to expose the
individual, through side-effects.
“Let’s say I have started using [ART] and I
have never had rashes or pimples, then I have that effect, now that way one can
know how our status is.” (HIV-positive woman).
perceived stigma emerged as a central challenge to starting treatment early. Fears
of being seen with HIV treatments, or accessing HIV services, would hinder the
uptake of therapy. Life-long adherence was also raised as a concern,
particularly in the context of early treatment.
“Starting ARVs early when your CD4 is still
high is something that is very hard, because when you start that way the ARVs
you know that you have already signed a contract forever, there is no day you
are going to stop.” (HIV-positive
treatment was strongly associated with the idea of people being on their
deathbed or in the grave, a reminder of HIV as a terminal illness. The
following exchange between three women living with HIV occurred in a focus
“Now if you start and you haven’t reached 350,
you will feel like you have reached another stage.”
“You know the mentality that is there when you
take the ARVs, it means you are at the lowest stage and that is why people fear
“Like me, if I am given the ARVs I will think I
am nearing the grave.”
Many of the HIV-positive participants were taking cotrimoxazole
(Septrin) as prophylaxis, which was seen
as a medication for an earlier, less serious stage of HIV. A switch from antibiotics
to antiretrovirals would entail such a profound change in identity that it was
felt capable of threatening a couple’s marriage.
“When you take this Septrin you consider yourself to be in another
stage, you have not reached the final stage of the ARVs… Now if these stages
are brought forward and then I start taking them here, you see this person will
know now I am in the last stage. So even the benefits... which is very good, but
then we will have the negative effect, the psychological effect. That I am now
heading to the grave.” (HIV-positive man).
The researchers argue that counselling messages regarding starting
antiretroviral therapy need to be modified. This was also a point made by some
“We could change
people’s thinking, they should be told it is not that they are in the last
stage, but we are trying to protect your body... It needs counselling and
counselling should start early.” (HIV-positive man).
And in the investigators’ language: “The implementation of
early ART for HIV prevention presents an opportunity to re-orientate
conversations to the benefits of early ART, emphasizing the role of ART in
maintaining health and HIV prevention, capitalizing on positive attitudes of
partners regarding earlier ART, and portraying a new image of individuals on