The Working Group on New Prevention Technologies (NPTs) during one of its teleconference meetings was joined by Ms Mitzy Gafos, principal investigator of the PRO 2000 Microbicide Trial in Kwazulu Natal, South Africa. Kwazulu Natal has a high prevalence of HIV, where half of the women between 25 and 29 years are living with HIV.

The focus of the call was to be informed and discuss how such a trial has been able to engage with networks of people living with HIV locally. Ms Gafos, however, explained these groups do not exist due to the high level of stigma surrounding HIV in Kwazulu Natal.

Ms Gafos illustrated this by quoting evidence that even with the trial staff it proved very difficult to make HIV a topic. Since the start of the trial five staff members passed away, of whom at least four because of HIV related illnesses. To make it easier to talk about HIV, a counselor was asked to join the team. However, the counselor himself quickly fell ill, and it turned out he himself had never tested, as he claimed his illnesses were caused by witchcraft by his neighbors.

In addition, Ms Gafos showed how during screening women who were ineligible to participate in the trial due to their positive HIV status, would be given appointment cards anyway, as having no appointment card was seen as testing HIV-positive. For the sero-converters in the trial special couple counseling sessions were set up, but not even one couple turned up, and in many cases the women do not inform their partners.

The Working Group members were overwhelmed to hear about the impact of HIV stigma in a community with such a high prevalence of HIV. Even within the context of an HIV prevention trial where support is available for people living with HIV, HIV stigma hinders people from taking an HIV test and accessing HIV-related services. The Working Group highlighted the importance of documenting these experiences and working with networks of people living with HIV to identify ways of addressing HIV stigma within the context of HIV prevention trials and within broader communities.

This teleconference meeting is the third of four calls organized by GNP+ in 2009 to explore the experiences and role of people living with HIV in the research and development of NPTs. The discussions on the teleconference calls will form the basis of a discussion paper and information tool about opportunities for people living with HIV to engage in work on NPTs.