Last November, in preparation for the International AIDS Conference, taking place this month in Vienna, I attended a preparatory meeting, which brought together about 30 women, mainly HIV positive, from across Europe and Central Asia region.
When I entered the meeting room I was welcomed by smiles and greetings in different languages. A dark woman with oriental eyes, from Kazakhstan, two statuesque blondes in vertiginous heels from St Petersburg, and many others from all parts of Europe. Even now that I have been HIV-positive for over 13 years and attended countless such meetings, I still feel surprised at the vitality, and energy of most of us. Nobody who had entered the room could have ever guessed that most of us hosted in our bodies this feared virus.
When we started talking however it became clear that, despite our healthy looks and lively personalities, HIV was making our lives very hard. One by one we made presentations on the situation in our countries and how we were trying to respond to it. Not all of us spoke English but we managed to translate for each other.
The Eastern European reports were the most chilling. The Russian women were among the youngest in our group, in their early twenties. Nevertheless, you could see really motivated activists. Russia has one of the fastest growing and largest HIV epidemics in Europe. Officially the government numbers are a few hundred thousands. However in Russia UNAIDS estimates there are over 1,000,000 HIV-positive people and 38% of those are women. The women at our meeting highlighted that even if heterosexual transmission and intravenous drug use are the main routes of transmission, shockingly, some women also acquire HIV in hospitals, because of lack of universal precautions. They also talked about the immense lack of resources, especially for women in prison, who have no access at all either to prevention or treatment services.
Stigma and discrimination abound in Russia. The general population still holds the false perception that HIV only affects drug users and “prostitutes”. If the women who use drugs want to access HIV treatment they need to register as drug users. This puts them at risk of losing custody of their children. Therefore women often get really sick and die, because trying to access medication could lead to being separated from their children.
The conference in Vienna this July will be my third International AIDS Conference; I first participated in one in 2006 in Toronto and taking part in the conference was a turning point in my life as an HIV+ activist. It was the first time that I experienced first hand the global impact of HIV. I was hugely inspired by meeting so many activists from different countries who were facing incredible challenges whilst also showing courage, focus and resilience. I will never forget two other openly HIV positive women who spoke in front of thousands of people during the plenary sessions. Firstly Louise Binder who opened with words, which still resonate in my head:
“I want to speak to you today about power, the driving force behind the HIV epidemic today. Where power resides, the epidemic recedes. Where power does not, the virus thrives. Today the virus thrives. “
Seeing her speaking changed me. She talked with authority, not about women as victims but about how women bring innovative solutions. She showed slides of projects in South Africa that were addressing HIV not in isolation but in conjunction with challenging gender inequity and gender violence, driving forces behind the HIV epidemic worldwide.
Another HIV+ woman who deeply inspired me at that conference was Alexandra Volgina who spoke about FrontAIDS, the Russian drug users’ movement, which has been fighting the Russian government for access to ARVs for drug users in Russia. This included chaining themselves in front of the health ministry, and demonstrating in the street. The images in her presentation show them with torches and faces covered, maybe because of the punitive attitudes towards drug users.
Seeing those two openly HIV+ women speak in front of thousands of people ignited a sparkle inside me. I decided that it was time for me to step up. Following the conference I took the conscious decision to become more open about my HIV status. I knew that being open is crucial in challenging stigma and discrimination around HIV. Also my work in developing PozFem- the national network of women living with HIV in the UK - was hugely affected by the ideas and energy I had gained at the conference. I made it my mission to support many more positive women to become vocal and open.
This year I hope that the meeting in Vienna will be a source of inspiration, knowledge, confidence and new connections for many more women who are budding activists. I hope that Vienna will be an opportunity to make our voices clearer and louder and, most importantly, that leaders of the world will be forced to listen to us and act to fulfill our human rights.