Ten years ago, Khayelitsha, in Cape Town, was the first place to make antiretroviral drugs available to the public sector, marking a milestone in the beginning of the end of AIDS denialism and the fight for treatment in South Africa.
With more than half its population unemployed, Khayelitsha is one of South Africa's largest and fastest-growing townships, and home to one of the highest burdens of HIV and TB infection nationally and globally. In 2009, antenatal HIV prevalence was 30 percent and the case notification rate for TB was at least 1,500 per 100,000 people annually – among the highest estimated TB incidence rates in the world.
Alarming as those figures may be, Khayelitsha is a beacon of hope for the AIDS epidemic in South Africa, where the provision of ARVs had been fraught, marked by a bitter stand-off between AIDS activists and government over the slow pace of the rollout.
"It was scary back then [in the late 1990s]. No one would say ‘I'm HIV positive’. It was very stigmatized," recalled 42-year-old Xoliswa Liba. An estimated 80,000 of Khayelitsha's population of 500,000 are HIV-positive. Liba tested positive in 2006.
"At first, I wouldn't have even spoken to you about my status. But as time goes on and I'm around people who are HIV-positive and we talk about it, it's become easy for me to say I'm HIV-positive," Liba told IRIN/PlusNews.
The Khayelitsha story
"I rushed to Khayelitsha ... expecting everyone speaking about HIV, everybody dealing with HIV, people in the streets, pamphlets being distributed. But actually it was total silence," recalled Eric Goemaere, medical coordinator for Médecins Sans Frontières (MSF) in South Africa, describing his first days in the township in 1999.
Goemaere, who was supporting a provincial pilot programme preventing mother-to-child-transmission of HIV, was shocked to discover it ran in a "semi-clandestine" manner because of government denialism.
"ARVs were not available before 2002, so people used to die in high numbers. There was much denialism - also from the government's side if you remember," Monde Kenneth Hobongwana, 37, who tested positive in 2008, said.
After a two-year struggle to gain permission from pharmaceutical patent-holders to use generic drugs without government involvement, in May 2001 the first patient in Khayelitsha received antiretroviral therapy through an MSF-supported pilot programme.
In 2002, MSF's treatment programme had 180 slots. That number grew to 400 by the end of the year. In 2004, the national government finally came on board with free treatment for anyone whose CD4 count was below 200.
Stigma and adherence
In 1998, Khayelitsha conducted 450 HIV tests, and ART was not available to the public sector. In 2010, 55,000 HIV tests were done, and nearly 20,000 people now receive ART. Under the current guidelines of a 200 CD4 count treatment threshold, 75 percent coverage has been achieved.
Those numbers are attributed first to the availability of treatment, but also to the tremendous awareness-raising efforts spearheaded by the Treatment Action Campaign (TAC), which has led the fight for HIV prevention and treatment since 1998. It clashed with the government - particularly former President Thabo Mbeki and former Health Minister Dr Manto Tshabalala-Msimang on numerous occasions during their nine-year tenure - most notably during a Constitutional Court battle that eventually compelled the health department to provide ARVs to HIV-positive pregnant women to prevent mother-to-child transmission.
"I remember there was a stigma in our communities [attached] to the people living with HIV. They would insult their neighbours, calling them names, all kinds of bad things. I think it's getting more normal now. People are more open with their status," said Abongile Tikolo, 25, who tested positive in 2009.
"If you have a very good support system you can survive HIV. When you're sick and you see these people around your bed ... you have something to live for," commented Liba, who slipped into a coma almost immediately after her diagnosis.
Liba, who became a TAC peer educator, said TAC's awareness-raising campaigns, which include household visits to educate community members, as well as educational workshops for HIV-positive people, have changed what it means to be HIV-positive in Khayelitsha.
"Here people know their rights and they talk openly about their status," agreed Nonqaba Jacobs, 28, originally from the Eastern Cape, who tested positive in 2004.
TAC also emphasizes the importance of disclosing one's status. Tikolo said his disclosure to his family helped him stick to his treatment. "Sometimes they remind me when it's time to take my pills: 'It's 9 o'clock, have you taken your pills?'"
The way forward
"Up to now, [the challenge was] to get people to survive," Goemaere told IRIN/PlusNews. "Challenges for tomorrow are mostly two-fold: keep the ones treated on treatment, and to have an impact at the population level: meaning reduce incidence of both HIV and TB. But the one will go with the other." Seventy percent of TB patients in Khayelitsha are also HIV-positive.
Goemaere explained that treatment probably remained the best prevention method. "It's the best-known way today to reduce HIV incidence, all other things being equal. Once their viral load is undetectable, they are hardly contagious," Goemaere explained.
Meanwhile, MSF and TAC have targeted men and the young as the population gaps in treatment. MSF is piloting two youth-specific family planning/HIV clinics with outreach activities, including testing in schools, and a walk-in clinic offering testing for sexually transmitted diseases and HIV for men. Goemaere says the latter is the most popular testing unit for men in the township.
Though the challenges are still immense, hope is palpable. Norute Nobola, 47, said: "I was very sick and sad. I was lonely, black in my eyes, I was telling myself my life was over. Now I'm 10 years on treatment, I'm not scared and I feel strong."
This article was produced by IRIN News while it was part of the United Nations Office for the Coordination of Humanitarian Affairs. Please send queries on copyright or liability to the UN. For more information: https://shop.un.org/rights-permissions
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