Background

South Africa bears the world’s largest burden of HIV with over 6.4 million people living with the virus [1]. The South African government’s response to HIV has yielded remarkable results in recent years, over 42% of South Africans tested for HIV, with 52% of females and 37% of males testing in 2012 [1]. While HIV counseling and testing (HCT) coverage has increased in the country there is a need for continued expansion of HCT, coupled with linkage to care, as only 31% of known HIV positive persons were on antiretroviral treatment (ART) [1]. People living with HIV (PLHIV) are often diagnosed late, resulting in avoidable morbidity, mortality, and transmission of the virus [2–4].

Effective control of the HIV epidemic in South Africa requires high coverage of HIV testing and linkage to treatment amongst all groups [2, 3, 5, 6]. Despite improved testing coverage in the general population, hard-to-reach groups—such as men who have sex with men (MSM), commercial sex workers (CSW), adolescents, and all men—are underserved, with poor access to testing and treatment services, high levels of stigma and discrimination and poor integration into health systems [7].

Facility-based HCT alone (whether client-or provider-initiated) will not be sufficient to achieve universal access to HIV testing and treatment. Barriers to testing through standard facility-based options are complex and varied, and include inconvenient clinic hours, long distance from facilities and the cost of traveling to clinics [8]. Concerns regarding stigma, discrimination and the fear of positive results continue to limit uptake of HCT in many high HIV prevalence settings, including South Africa [5, 9]. Compelling evidence is emerging in South Africa and other contexts that community-based models of testing (mobile and home-based) are capable of reaching a wider range of target groups, expanding the geographic coverage and uptake of HCT and addressing some of the barriers to more conventional HCT models such as time, cost and distance [10–15].

Based on increasing evidence from feasibility and acceptability studies in some parts of Africa, activists and public health policy makers argue that non-invasive HIV self-testing (HIVST)—an HIV test collected, performed and interpreted in private by the individual who wants to know their HIV status [16]—should be incorporated into the country’s HCT portfolios. The view is that like other community-based models, HIVST has the potential to bypass facility-based barriers by offering a convenient, confidential, and unsupervised HIV testing option for groups not currently accessing HIV testing [8, 17, 18], possibly encouraging earlier linkage to treatment and care services [19, 20].

HIV self-testing is not without challenges. The most significant argument against HIVST relates to concerns about the absence of in-person pre- and post-test counseling which have been the hallmark of traditional voluntary or client-centred HCT [3]. Concerns are that the absence of counseling could increase the risk of distress and suicide for those who test HIV-positive [21], lead to coerced testing, increase the possibility of social harms to more vulnerable individuals [22], lower rates of linkages to treatment and care, and result in missed opportunities for prevention in high risk negatives. However, a recent review of 300 articles showed little evidence of psychological, medical or social harms through selected self-tests as well as HIV self-tests [23].

While the opportunities and barriers afforded by HIVST have been explored in several settings including the United States, Singapore, Kenya and Malawi [10, 20, 24, 25], perceptions of HIVST from South Africa, a country severely impacted by HIV, are less established. Several discussion and opinion pieces on HIVST in the South African context exist [21, 26, 27], but there are few empirical reports on the perceptions and attitudes of South African stakeholders’ on the constraints and opportunities of introducing HIVST [8, 28]. This paper presents a unique perspective of various stakeholders with influence in HIV prevention and treatment regarding the requirements for the introduction of HIVST in South Africa. It does so by reporting on the qualitative component of a larger study which assessed the feasibility and usability of a number of HIVST prototypes among lay users in Kenya, Malawi and South Africa, findings from which are reported elsewhere [29].

Methodology

Results

Levels of enthusiasm for HIVST were high amongst stakeholders with the view that: “… it [could] revolutionize testing in South Africa” (Academic 2); it was timely: “This is something that is long overdue” (Academic 3) and that it could be used to achieve universal testing: “Every South African should be tested at least once a year…we need to have various approaches of reaching people, innovative and yet user friendly” (Government representative 1). We expand on stakeholder perceptions on the opportunities and barriers to HIVST in the sections that follow.

Discussion

This qualitative study describes the perceptions of key stakeholders who influence policy on HIV testing, about South African readiness for HIVST. Notwithstanding the potential barriers that might come with the adoption of HIVST, the results indicate significant support for the introduction of HIVST in South Africa from various stakeholders who influence HIV prevention and treatment research and policy formulation. This is, to our knowledge, a unique contribution to the emerging literature on HIVST in this high-prevalence context.

Similar to other studies, our results indicate that if HIVST is to be implemented in South Africa, measures should be taken to ensure that poor, marginalized and hard-to-reach populations, are able to access the service by making the HIVST kits affordable for the majority [35]. This study goes a step further to highlight that for successful adoption and implementation of HIVST in South Africa, policy making needs to be strategically aligned to market forces, industry, advocacy and public demand for the HIVST. Respondents argued that for South Africa to establish a strong, inclusive HIVST programme, the government, international donor organizations and non-governmental organizations should subsidize the costs of the HIVST kits ensuring all have access.

Men and women make unequal use of public health facilities in many parts of Africa, with women having more contact with health facilities, mainly through reproductive and child health services [1]. Further, health services are not male-friendly spaces, with operating hours that often clash with work obligations, and provider attitudes that may lack sensitivity to men’s needs, further alienating them [6, 15]. As a result of this gender disparity in health care, men have fewer opportunities and disproportionately poorer access to HIV prevention, care, and treatment services. Our results suggest that HIVST has the potential to address some of these gender disparities in testing and treatment, by affording men the opportunity to act autonomously, to make decisions for themselves and their health privately and confidentially, on their own terms, and at their convenience [36].

Although not unique to HIVST, the optimism and opportunities presented by HIVST were tempered by the caution that for HIVST to work several concerns must be addressed. Key amongst these is the lack of in-person counseling and the potential for harm that may result because of this [22, 25, 27]. Like others, South African stakeholders also lamented the limited opportunities for linkage to care in the HIVST model [26]. Results from our study corroborate previous reviews stating that linking HIV positive people to treatment and care is an on-going problem, even in facility-based testing centres [2, 22, 26]. Respondents emphasized that linkages to treatment and care depend on individual will. Our study points to several strategies for addressing these issues. First, as per the WHO guidelines [4], using HIVST as a screening test would encourage confirmatory testing through a health facility and may facilitate linkage to care.

Second, our study found that the lack of a face to face counselor provides a unique opportunity for researching innovative strategies to provide counseling (i.e. through online or mHealth technologies, via a toll free number) and to link people to care. Self-testing instruction kits could also provide much needed information on what HIV positive people should do after they test, namely; where to get further counseling, where to go for confirmatory tests and CD4 counts, how to get linked to treatment, care and support.

Concerns that HIVST may lead to coercion in the home environment, creating situations where the individual rights of women and children are abused have been raised by these stakeholders and elsewhere [22, 23]. However, throughout the growing literature on HIVST, there is no data to support this claim in the South African context [27]. Based on the stakeholders’ views and other previous studies, this paper recommends that HIVST should not be restricted based on fears of harm, but rather that as HIVST is expanded, researchers and policy makers should pay particular attention to monitoring and measuring of unintended harm [23].

To mitigate the unintended harm and the potential abuse of individual rights and forced HIV testing in the HIVST model, this study emphasizes the importance of establishing a proper regulatory system that protects children, women and employees from being tested against their will. As highlighted in previous studies, our study revealed that the national health policies which fall within the confines of medical device regulation, should guide and inform HIVST implementation in both the public and private sectors [34].

One limitation to the study was that we were not really able to disaggregate findings by type or level of key informant. For example, it was difficult to establish whether donors felt differently from government officials on the introduction of HIVST in South Africa.

Conclusions

While there is currently no HIVST policy in South Africa [16, 34], and several barriers exist, there is willingness for scale-up and urgent need for further research, planning, establishment of HIVST policy and programming to complement existing facility-based and community-based HIV testing systems. Our study suggests that the introduction of HIVST could have great potential and far-reaching positive effects on holistic HIV testing uptake, early diagnosis, treatment and care for HIV particularly among hard-to reach groups, including men. In a country where the HIV & AIDS and STI National Strategic Plan aims to eliminate HIV incidence by 50 per cent and get 80 per cent of the population knowing their HIV status by 2016 [37], it is time to give people the autonomy to decide which approach they want to use for HIV testing.