Around 23.5 million people living with HIV reside in sub-Saharan Africa, representing 69% of the global HIV burden, according to new data released by UNAIDS for World AIDS Day (December 1). And in the worst affected region it is women who bear the brunt of the epidemic as 58% of those living with HIV are female.
Key Correspondent Williams Moi met Clare Apoo Ekellot, from Kumi in eastern Uganda who has been living with HIV for more than 20 years.
“I don’t mind about death now. I [have an] ordinary life like any other normal person. But at the same time I am living positively with HIV,” says Clare Apoo Ekellot who has lost three husbands, two to HIV.
Clare’s first husband was shot dead by rebels during the Lord’s Resistance Army insurgencies. She married again. This second man she says “brought love and disease.”
“I acquired HIV in 1991 when I am a pretty, jolly, beautiful lady working in Mbale District as a banking assistant in Eastern Uganda,” says Clare.
Clare left bank work in 2003, after repeated boughts of absence as her CD4 count worsened. She currently works as an account assistant at the National Community of Women living with HIV/Aids (NACWOLA), a club of 600 women who are openly living with HIV. The organisation started in Kampala in 1982 and came to Kumi in 2003.
“We start it [the Kumi branch] because we women feel that we are more discriminated and [we] formed this organisation to support women’s advocacy with openness on HIV. We accept living with the virus openly, not hidden, just like everybody should accept it,” says Clare.
Clare says she “gave testimony” to having HIV in 1991, over 20 years ago, coming out before her late husband and others in her community. She is now paid what she describes as “a meager salary” by NACWOLA but says this is not enough to sustain her life. She particularly worries how she will continue to receive antiretroviral treatment as it is often only accessible privately. However, she says she is driven by the need to spread messages of HIV prevention and awareness.
“I go to preach about HIV in families and groups, even if they discriminate [against] me while going to collect water from the well I persist,” she says. “They say ‘look’, pointing at the HIV clients and me, ‘that one walking to the well is finished, she is having HIV’ whereas others say [I have it because of] witchcraft or jealousy.
“I always go home-to-home, door-to-door, paying home visits with my group members while educating the public about the dangers of HIV. I tell them about acquisition, about marriage, blood tests, control and how to avoid HIV.
“I tell them face-to-face about the dangers of HIV. If you are a girl [I’ll say] don’t rush straight to sex, first blood test yourselves. We advise on family planning to produce a manageable number of children. It is useless to produce children whom you cannot support with food, education, healthcare and others.”
Of her last husband she says: “He insisted whether positive or not we must fall in love therefore I gave in to him. He died in 2006. He was my last husband; the third to die in series. I don’t want to hear about any man any more, you close that chapter…I want to keep my life for my children only.”
The Key Correspondent team is a global network of community-based writers from around 50 countries across Asia, Africa, Latin America and the Caribbean supported by the International HIV/AIDS Alliance. A large number of KCs are people living with or affected by HIV. All are volunteers and include those working in advocacy, media, health and development. Follow the KC team on Twitter @thekcteam.