This paper aimed to look at how do PLHIV experience their HIV status in the UTT era and whether the meaning of HIV evolved as the epidemic matured. We conducted interviews and focus groups with PLHIV in Johannesburg, South Africa, in May 2021 to better understand contemporary experiences of people living with the virus.

While many participants view HIV as “normal”, due to the availability of life-saving ART and increased visibility of PLHIV, transmission-related stigma still remains pervasive. Our findings echo those of other studies that have found that stigma remains prevalent despite the scale up of treatment [31, 32]. This is particularly concerning as studies have shown that stigma negatively impacts testing for HIV, a barrier to ART adherence and is associated with depression among PLHIV [33, 34]. Consequently, these problems ultimately undermine efforts towards the elimination of HIV [35] and the stigma associated with it.

HIV stigma is often internalized, leading to continued psychosocial harm [6]. Our findings show that study respondents reported feelings of shame and guilt for contracting the virus and perceived their infection as a moral transgression. These findings are consistent with prior research in sub-Saharan Africa, which showed that HIV infection was perceived to be a result of risky sexual behaviour [2, 7].

Alongside the shame of contracting HIV, respondents felt a deep responsibility to avoid transmitting the virus to others. Respondents reported fear and anxiety around transmission as a major concern. Prior literature suggests that PLHIV are deeply concerned about transmission and engage in a variety of behaviours to protect partners from infection, a phenomenon known as “HIV prevention altruism” [36]. To manage transmission anxiety, participants avoided relationships, avoided sex, choose to date other PLHIV, or insisted on condom use. These results are consistent with previous findings whereby individuals reported diminished sexual desire due to fears of transmitting HIV to others [37, 38]. Engaging in preventive behaviors to limit transmission represented an important zone of “moral agency” for PLHIV. For those who knew about TasP/U=U, the ability to effectively prevent transmission through daily ART adherence was tremendously freeing and an important burden lifted.

Another major concern was fear of rejection, which manifested in disclosure challenges. Some participants chose to conceal their status due to fear of judgement and stigma from their family, friends and/or partners. In some instances, indirect disclosure of HIV status occurred despite participants efforts to conceal status. Non-disclosure due to stigma can result in additional challenges for PLHIV including interruptions in treatment and can negatively impact quality of life [39]. Conversely, several studies show that individuals who disclose their status are more likely to receive support from their loved ones and are more likely to adhere to treatment [40]. Fear of rejection was also linked to internalized stigma, with several participants conveying that partners would be well within their rights to reject them because they were HIV-positive, implying that they perceived themselves to be a less worthy partner than someone who was HIV-negative.

Most participants in our study did not have knowledge of TasP/U=U and this is consistent with recent empirical work from South Africa [25, 27] and a global systematic review [28]. In our study, the only participants that were knowledgeable about TasP were those recruited from a civil society organization that does advocacy work on TasP/U=U. These participants expressed that they were no longer worried about infecting their partners. Moreover, they felt confident disclosing their status to others because they knew that they could not infect someone else. And they no longer feared rejection because their partners had no good reason to reject them.

Our findings underscore the significant extent to which messaging on TasP/U=U may address the significant hardships experienced by PLHIV due to persistent transmission-related stigma, anxiety and shame. It is therefore paramount to ensure that U=U/TasP information is disseminated widely [41]as it offers an opportunity to reduce stigma and discrimination against PLHIV [42]. The message of U=U/TasP offers people the opportunity to exercise their moral agency, to have full lives with families, sex, and relationships without feeling like they are a threat to others. Equipping PLHIV and the society at large with sufficient knowledge is a powerful tool to eliminate misinformation and break the cycle of stigma.

The results should be considered in light of several study limitations. First, the study population is not representative of the general population. Our study was conducted in a predominantly peri-urban urban setting with only a few health facilities included. The study is subject to potential bias due to some of the participants recruited via referrals. In particular, the participants who were knowledgeable about TasP/U=U were identified through a U=U advocacy organization and may have had greater confidence in TasP than other persons knowledgeable of the science. We also did not explicitly recruit groups of people that are at higher risk for HIV acquisition including members of the LGBTQIA+ population, sex workers, and people who inject drugs. Despite these limitations, we were able recruit a study population via purposive sampling that was diverse in terms of gender, age and level of U=U/TasP knowledge. Second, although we reached saturation in our key themes, the sample size was limited, and this study may need to be replicated in other settings and augmented by quantitative surveys to further establish generalizability. Third, coding/analysis of qualitative data is subjective. To mitigate the impact of potential rater bias, we had at least two coders (TS, RC, JB) code all transcripts and held detailed discussions to reconcile differences in codes and interpretation.