“I was scared dating… who would take me with my status?”- Living with HIV in the UTT era in Johannesburg, South Africa

BACKGROUND South Africa rolled out Universal Test-and-Treat (UTT) in 2016, extending treatment eligibility to all persons living with HIV (PLHIV). Through this study, we sought to understand the experience of people living with HIV in the UTT era in South Africa. METHODS In May 2021, we conducted in-depth interviews (IDI) (N = 27) with adult (≥ 18 years) PLHIV referred by HIV counsellors at three peri-urban primary healthcare clinics. We also conducted three focus group discussions (FGDs) (N = 27) with adult PLHIV recruited from clinics or from civil society organisations through snowball sampling. Follow-up interviews were conducted with 29 IDI and FGD participants, to gain a deeper understanding of their journey living with HIV. Participants were asked to reflect on their HIV diagnosis, what their HIV status meant to them in light of the UTT era and how, if at all, being HIV-positive affected their lives. Interviews and focus group discussions were audio-recorded, transcribed, translated to English, and analysed thematically. RESULTS The study included 4 men and 23 women recruited from clinics and 12 men and 16 women recruited from civil society (total N= 54). Participants reported that PLHIV could live a long life with antiretroviral therapy (ART) and that ART was widely accessible. However, they reported that HIV elicited feelings of guilt and shame as a sexually transmitted disease. Participants used the language of “blame” in discussing HIV transmission, citing their own reckless behaviour or blaming their partner for infecting them. Participants feared transmitting HIV to others and felt a responsibility to avoid transmission. To manage transmission anxieties, participants avoided sexual relationships, chose HIV-positive partners, and/or insisted on using condoms. Many participants feared – or had previously experienced – rejection by their partners due to their HIV status and reported hiding their medication, avoiding disclosure to their partners, or avoiding relationships altogether. Most participants also reported having low to no knowledge about treatment-as-prevention (TasP). Participants who were aware of TasP expressed less anxiety about transmitting HIV to others and greater confidence in having relationships. CONCLUSION Despite the normalization of HIV as a chronic disease, PLHIV still experience transmission anxiety and fears of rejection by their partners. Disseminating information on treatment-as-prevention could reduce the psychosocial burdens of living with HIV, encourage open communication with partners, and remove barriers to HIV testing and treatment adherence. ### Competing Interest Statement The authors have declared no competing interest. ### Clinical Trial NCT04504357 ### Funding Statement Funding acquisition: This work is funded by the National Institutes of Health. ( https://reporter.nih.gov/search/Ek4tFJQaLE6aKgl6hX1l\_g/project-details/10082738 https://reporter.nih.gov/search/Ek4tFJQaLE6aKgl6hX1l\_g/project-details/10227801) Initials: JB and DO ‘The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.’ ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: This study was approved by the Human Research Ethics Committee (Medical) of the University of the Witwatersrand (M200529 MED20-05-019) and Boston University Medical Campus Institutional Review Board (H-40891). I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines and uploaded the relevant EQUATOR Network research reporting checklist(s) and other pertinent material as supplementary files, if applicable. Yes The authors declare that the data will be made available.