As the Aids pandemic gathers momentum, the number of people requiring treatment grows, and more are dying every day.
The reality is that just a small number of those who need anti-retrovirals have access to them.
A number of private initiatives have sprung up recently to pick up the slack. One of these is the Tapologo HIV/Aids Programme, based in the North West town of Rustenburg. Managed under the auspices of the Catholic Diocese of Rustenburg, Tapologo is headed by Bishop Kevin Dowling and brings together health workers, NGOs, Christian-based organisations, traditional leaders and government departments to launch a holistic assault on HIV/Aids. It aims to equip the local community with skills in counselling, home-based care and fostering services for orphaned and vulnerable children.
Central to the programme is the Tapologo Eco-village, situated on the edge of Phokeng Village, on land that was once part of Paul Kruger’s farm. The village includes an inpatient hospice unit designed to offer end-of-life care for people in the final stages of Aids, as well as a clinic from which an outreach centre is run.
The village, which is still under construction, was designed by environmental architect Henning Holm and features geothermal cooling systems, with solar energy panels and an organic garden. This innovative design cuts maintenance costs significantly and replaces electricity because the area often experiences violent thunderstorms and powercuts.
Since opening its doors in October last year, the 30-bed eco-village has taken in almost 400 patients needing ARV treatment or palliative care. “Many come here as part of the immune system rejuvenation programme,” explains Sister Hilda de Bees, who is in charge of the inpatient unit. “We stabilise their immune systems before offering ARV treatment.” Of the 30 patients living at the hospice, 23 are on ARV treatment.
This eco-village is just one site offering palliative care under the Aids Outreach Programme, which covers nine communities around Rustenburg — Freedom Park, Boitekong, Sunrise, Kanana, Plaseng, Chaneng, Ledig, Phokeng and Luka. It has eight treatment sites staffed by 90 home-based caregivers who report to nine professional nurses.
Rustenburg, rich in mineral resources, with a number of platinum mines, is one of the country’s fastest-growing cities and attracts many migrant job seekers.
Under ideal circumstances, a patient would return home to continue treatment under the observation of home-based caregivers, De Bees says, but many return to their country of origin to die.
Twenty years ago, the Freedom Park squatter camp sprang up near the Impala Platinum Mine, when people first settled there to sell beer to miners. Many of its residents are unemployed, there are no basic services such as water and sanitation, and social problems such as crime, violence and poverty are rife.
Sister Georgina Boswell of the Freedom Park Clinic says that about 530 people have been receiving ARV treatment since it was first rolled out about a year ago and, of these, about 130 died almost immediately. “Many people were frightened,” she says. “A lot came out too late and died before the treatment could help them.” Currently, about 400 people are receiving ARV treatment under the programme.
Tsidi Majaka, a counsellor and home-based caregiver, says that, of the 22 patients she visits in Freedom Park who are receiving ARV treatment, only one has an Aids grant from the North West department of social services. The rest, she says, live dangerously close to starvation, depending on handouts from neighbours and other benefactors.
Boniwe Sweleni is one of the “lucky” few. She lives with four of her nine children in a one-room shack, and first came to Freedom Park from the Eastern Cape about eight years ago in search of employment. Instead, she met a man with whom she resettled in Marikana, another squatter camp in the Rustenburg area. The man died in a car accident more than a year ago, leaving a pregnant Sweleni destitute. She gave birth to twins about 11 months ago, and she survives on the child support grant of R180 she gets for each of her twins. Their food supply regularly runs out, leaving them at the mercy of neighbours, making it impossible for her to take her medicine properly.
“When there is no food, I don’t even try to put them [the ARVs] in my mouth, because I was told not to,” she says, fanning one of her twins in her windowless shack. “Today, I haven’t taken them because I don’t have food.”
Sweleni says she cannot return to her home in the Eastern Cape, where she has five other children, because she fears the stigma attached to the virus and that she won’t be able to access treatment.
But the impermanence of Freedom Park, which has no electricity, no water, no toilets and no refuse removal, continues to trap her in a corner that forces her to live one day at a time.
“We cannot even construct a primary school unless it is in shipping containers,” says Dowling. “The squatter camp is illegally occupying land belonging to the Bafokeng tribe, which is why the government is not providing any basic services for the area,” he says. “We were told we cannot construct anything that cannot be lifted off at a moment’s notice.”
Dowling acknowledges that food is the biggest stumbling block to the efforts at Tapologo. “To take these drugs on an empty stomach is detrimental. We provide one free meal at our clinics every Wednesday when people come to get their treatment.”
The programme receives some funding from the President’s Emergency Plan for Aids Relief, but this is not enough to cover all their needs, and Dowling says it is a constant struggle to find adequate financial support.
“An American environmental group helped us with the funding for the organic farm, irrigation system and money for the hot house in order to grow fruit trees,” he says. “So we try to get funders who are interested in key focus areas.”