The HIV and AIDS epidemics are continuing to impact upon the lives of millions around the world. In the UK approximately 83,000 people were living with the HIV virus at the end of ‘08, with 27 percent initially unaware that they had been infected. In sub-Saharan Africa, at the end of ‘08, an estimated 22.4 million people were living with the virus, withsub-Saharan Africa AIDS being the primary cause of death in the vast region.
These powerful statistics show there is still a great deal of work to be done in terms of developing treatments and creating effective prevention campaigns that target the demographics most at risk. In the UK, over 50s are becoming a major focus, as the Health Protection Agency asserts that nearly half of older adults diagnosed with HIV between 2000 and ‘07 contracted the virus at age 50 or above.
When it comes to HIV and AIDS the phrase that should spring to mind is ‘education, education, education’ and not discrimination. Christian Aid’s HIV mainstreaming coordinator, Winnie Ssanyu Sseruma works tirelessly to advocate for and educate those living with the virus, while spreading awareness of HIV and its implications. New Africa Analysis spoke to Winnie in order to learn more about her own experiences with HIV, how the virus affects black communities within the UK, what is currently being done to tackle the virus and what more needs to be done.
Born in the UK but growing up in Uganda, Winnie has the advantage of a dual perspective on the issue. Furthermore, as a woman living with HIV she brings a personal understanding of the impact that the virus has on individuals. However, speaking with her, one gets an immediate sense of her passion for life and for her cause, yet Winnie is keen to assert that she wasn’t always so positive: ‘I don’t want to paint a picture where I say that I’m able to deal with it so well because it wasn’t always like that. It was quite difficult, in the beginning, to understand why it happened and the kind of impact it was going to have on my life’. Informing friends and family was also an initial challenge but not for the reasons that you might automatically assume: ‘I made a decision not to tell my friends or family for the first few years, mainly because I had to understand it first. It wasn’t because, I wanted to hide it; in fact it was because I wanted to sort it out in my own head before I could tell other people’.
Although Winnie has been fortunate enough not to have been judged by those closest to her, stigma is still an enormous problem among black communities, continuing to compound the impact of the virus for those living with it. It can destroy the self-esteem of those living with HIV, who often stigmatise themselves, erstwhile bearing the cruel burden of being marginalised by the ignorant. Gaining a thorough knowledge has been and is still a major preoccupation of Winnie’s. Prior to securing her current role at Christian Aid, she chaired the UK African HIV policy network, becoming the first HIV positive person to act as chair. The network was established in the UK by those members of the black community living with the virus to support and help Africans advocate at policy level about AIDs and HIV. Winnie also initiated Ffena, which means ‘all of us’ in Lugandan, and is a project for African people living with the virus, helping to amplify their voices and emphasising the meaningful involvement of people living with the virus in HIV campaigns. Powerful campaigns are absolutely essential, especially since many new cases of infection in Africa are occurring among unlikely groups: married couples and those in long-term relationships.
According to Winnie there are three messages that the public must hear: ‘This is the good news: now people living with HIV who want to have children can have children who are not HIV infected. We have a lot of information out there for people to learn how to protect themselves, so every single person has the resources to learn. The last bit of good news is about people living with HIV: we are living longer, we have a really good quality of life and we’re taking treatments to make us even less infectious’.
Thus, although the HIV virus can have devastating implications, it does not have to control a person’s life. Perceiving the virus in a constructive way is the key to staying safe and living a fulfilled life: ‘Within my 22 years or more of living with HIV, I’ve only called in sick twice and it wasn’t because I had an ailment but because I had overworked myself. So for me it is around being mentally active. My mental capacity has helped me get through a number of things. Just live your life the best way you know how and don’t put any limitations on it.’