What got you involved in the AIDS movement and particularly around PrEP advocacy?
I was diagnosed with HIV when I was 26. My daughter was only a year old. I gave birth to her at a public hospital and the whole process was insensitive and flawed on so many levels. I was tested for HIV but never got my results. After giving birth I was so scared and decided not to breastfeed. I did not know my status and did not want to harm my baby. When she was a year old I went to for an HIV test and found out I was HIV positive. I was angry and scared that my baby might be HIV positive. I took her to be tested and found out she was negative. The news gave me a new lease on life.
I started educating myself about HIV. I started speaking to other HIV positive people and found out more on the Internet. Everything I know about HIV is self-taught. Initially I just needed the information to survive, then I started reading more about training and other organizations like ACT UP, Sister Love and TAG. I started working in my own community and soon I was in the midst of fighting policies and positions of South African President Thabo Mbeki and Minister of Health Manto Tshabalala-Msimang around 2000, when the International AIDS Conference was held in Durban.
I had just started my treatment and people in the public system could not access ARVs. It was personal -- my friends who gave me strength and courage were dying. To me, advocacy for PrEP is the same as the advocacy for treatment. There is a level of denial of its efficacy like with treatment. However the more we delay, the more people are getting infected.
Why are people in denial about proven methods? We know treatment is prevention so let's move and get everyone on treatment and virally suppressed. We are also in the most unfortunate space where a big number of young women and girls are infected with HIV and new infections among them are not going down or stabilizing. It is also true that the structural issues that fuel the sugar daddy phenomena in South Africa and elsewhere in Africa are not being addressed or even understood.
I am HIV positive and on Truvada for treatment. I advocate for PrEP because I know as a woman I would have wanted a choice for how to protect myself. I want to make that choice without fearing if my partner would be OK with it. That is what access to PrEP will do to young women and girls -- it will liberate them and give them choices about the kind and type of sex they want. I also want to reiterate the fact that PrEP is available in the US. Why is it not available in South Africa? Is denialism once again the issue?
What is an example of PrEP advocacy work you have engaged in recently? Is there a particular tactic or approach you have used in your advocacy that you could share?
During my fellowship I worked with 90 young women in Mpumalanga and have trained them on new prevention technologies (NPTs). I have developed a tool for communities on new prevention technologies, which can be used to start discussions. I am mentoring seven young girls specifically on PrEP advocacy.
From your perspective, what are the top priorities for PrEP advocacy to advance an accelerated, more equitable response to AIDS?
Governments and policy makers need PrEP education themselves. Conferences are not enough. Advocates need to do more to educate them. Advocates need to prioritize this in their work and provide correct information to prevent misinformation, which can lead to denialism. The approval of Truvada for PrEP in many countries needs to be a priority. We also need to develop PrEP guidelines for all populations and especially for governments. We need to be able to answer the questions - Who needs PrEP? Who are we prioritizing?
If you were speaking to a young advocate interested in HIV and AIDS advocacy, what would you advise her/him about how to be effective?
Do not look for the big lights and the cameras; there is no glamour in AIDS advocacy. When my friends say that I am always on television, I tell them that during every interview I disclose my status -- where is the glamour there? Your community is probably your most important space to work in and where you will have the biggest impact. AIDS advocacy is about not letting the people down whom you represent. At times it will feel as if you are carrying the weight of the whole world and you probably are. Be cordial, be civil and be polite but policy makers can never be your friends. We are losing the essence of civil society because of their proximity to policy makers and bureaucracy. And be that change that you want to see in the world -- it starts that small.