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 serodiscordant couples.
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 man).
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).
HIV-related 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 man).
Moreover, 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 group.
“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 ARVs.”
“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 research participants:
“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 ART.”
Curran K et al. ’If I am given antiretrovirals I will think I am nearing the grave’: Kenyan HIV serodiscordant couples’ attitudes regarding early initiation of antiretroviral therapy. AIDS 27, 2013. (Click here for the abstract).