By Anna Devereux
HIV self-testing is positioned by the World Health Organisation as a way to increase testing for key populations, such as sex workers. Its also viewed as a mechanism to reach the 90-90-90 goals laid out by UNAIDS whereby 90% of all HIV positive individuals are diagnosed, 90% of all persons diagnosed are on a treatment plan and finally, 90% of those receiving treatment are virally suppressed by the year 2020. While increasing diagnostics is at first glance nothing but constructive, there have been concerns regarding the self-testing’s ethical implications. Within the literature coercion, intimate partner violence, an absence of counselling and a lack of follow up care have all been flagged as potential issues surrounding HIV self-testing.
Seeing the split in the literature between public health bodies and activists, I wanted to know whether HIV self-testing would work for sex workers, or if it was something to avoid. The reason I was so interested in sex workers particularly was because the scientific literature often inadvertently positioned sex workers as vectors of disease, which I found to be damaging and unjust. The year before I conducted my B.A research on sex work policy changes in Ireland so I was already aware that discourse around sex work could be toxic and misrepresentative, however, this was my first time researching within intervention science and I was shocked at how many academic papers separated health issues from cultural and sociological information.
I decided to focus a community based participatory approach to research which took into account stakeholders’ perspectives of a self-testing intervention, including that of peer educators – who are current or former sex workers. As I was doing a research internship with Aidsfonds, under the Hands Off! project I was able to connect to a network of actors who were working in the arena of health care for sex workers. The Hands Off! project has several aims: to prevent violence against sex workers, to support de-criminalization of sex work and to promote HIV care & prevention amongst sex workers. It operates in several countries in sub-Saharan Africa including South Africa which I decided to focus on in my research.
So in March of 2017, I set off to South Africa with another student to find out the context of sex work in South Africa, the public health response to HIV and to gain an understanding of how people on the ground viewed HIV self-testing. For the next six weeks I went on outreach with teams of peer educators to hotspots & brothels, visited sex work specific clinics and spoke to sex work activists and researchers. This was facilitated through connections fostered by my internship and through Utrecht University. During this time my aim was to get a feel of how sex workers and the healthcare community surrounding them perceived HIV self-testing.
Something that was very apparent during my time in South Africa was that sex workers had little trust in public governmental clinics. I heard stories of sex workers being afraid to disclose working in the sex industry to hospital staff for fear of abuse. I also heard stories of discrimination against sex workers in clinics. The stigmatization of sex workers left me wondering whether a HIV self-testing intervention would be the right intervention to increase testing for this community, since they require a great deal of autonomy to seek treatment following a result without any counselling involved.
When I returned to the Netherlands, I began my interviews. I spoke to peer educators, health care coordinators, HIV self-test researchers and sex work activists. The interviews were semi-structured and I used a different topic list for my interviewees based on their profession. For instance I asked peer educators about whether they would use a HIV self-test, how they have experienced health care in governmental clinics and how important counselling was when testing for HIV.
My results on self-testing itself were mixed, but something very striking was peer educators attitudes’ towards governmental clinics and the emphasis that was placed on the privacy and confidentiality of self-testing. This to me indicated that there were worries and fears that testing with a doctor would not be private or confidential and it points to the inadequacies of the health system. The lack of counselling incorporated in self-testing was another huge issue I encountered. Counselling is viewed as a way to get the correct information about HIV treatment and how to deal with the results. A lot of concern was demonstrated by activists for instance about increased chances of people taking their lives without the necessary counselling.
Overall I had the feeling that while HIV self-testing could be utilized to increase testing rates, the stigmatized environment of sex work in South Africa and the significant barriers to inclusive health care access made it difficult for me to see self-testing as a suitable intervention for sex workers in this context. Would sex workers who tested positive overcome barriers to health care access and seek treatment? According to some of my interviewees the answer was no. Not everyone I spoke to had a negative view of HIV self-testing, however there were enough concerns raised about the intervention to make me hesitant about promoting it in areas where clinics were not sensitized to sex workers.
This research was difficult because there are a lot of sensitive issues at play. I didn’t want to speak over sex workers and assume that they were not empowered to make their own decisions about their health. However I heard enough stories of abuse at public hospitals to recognize that many sex workers avoided clinics for this reason. Self-tests are already on sale in pharmacies at a low cost so they are accessible in this way already. Efforts should be put into sensitizing hospital staff to sex workers’ rights and changing attitudes towards sex workers rather than putting a plaster over the wound by handing out self-tests. To conclude, the water is murky - I finished this research project wondering if I had a concrete answer. Personally I feel like self-testing isn’t the best option at hand, but I could imagine it supplementing different interventions at sex work friendly sites. However, in environments where sex workers do not have sufficient access to healthcare I doubt that self-testing will be an adequate response.