The Face of AIDS in South Africa
The Disease with No Name
On October 25, 2002, 26-year old Zanele Mavana is slowly dying in her home in a rural village of the Eastern Cape Province, South Africa. Her three children, ages 10, 8, and 4, watch as their mother's bones become more visible. She no longer has the strength to get out of bed; her diarrhea has stained the sheets as she waits helplessly for someone to clean her. To reach the nearest hospital, she would have to walk for hours, first through the open, hilly field surrounding her home, followed by mud roads, then gravel roads, and finally a tarred road. Her family does not own a car. Zanele drifts in and out of consciousness, unsure if she is dreaming the muted whispers of her step-sisters and brothers. They are discussing who will claim her medical aid and who will get her clothes when she dies. They refuse to touch her or spend time in her small room, fearing they will catch what is referred to here as the "disease with no name". The disease is HIV/AIDS, and this is the harsh reality of life in this community.
Two days later, a colleague arrives to see Zanele. He is worried because she has not visited any of the nine families she cares for in her work as an AIDS home care supporter. As he walks into Zanele's cramped and fetid room, her face blurs together with the faces of the other terminally ill patients he sees every day. Zanele has always been a woman who has worked tirelessly to support families with loved ones dying of AIDS—families with no money for medical treatment, food, or transport. He cannot let her die in this way. He loads her into the back of his 4X4, the only car that can traverse these roads, and drives to the emergency room of the nearest hospital.
A Visit to the Hospital
The local hospital is understaffed, experiences frequent drug shortages, and is housed in a building full of cracked walls, holes in the ceiling, rusted beds and outdated medical equipment. It is typical of this region, once an apartheid-regime homeland called Transkei; these homelands were created as separate "countries" where blacks were forced to live. Today, this region has some of the worst health indicators in the world: there is only one doctor for every 17,000 people; 70% of the region's hospital beds are occupied by patients with HIV/AIDS; and tuberculosis (TB) cure rates are below 20% in some areas.
Zanele is admitted immediately. Her case is no different from the hundreds of others seen every week in this hospital. The beds around her are filled with emaciated young women who have sores on their mouths and cannot stand, eat or go to the bathroom on their own. As one nurse says, "We don't expect any of these patients to be discharged." Many of these women have no visitors; most of them do not know they are dying of AIDS. Even if they were tested for the virus, what would a positive HIV test offer them at this stage? There are no medicines available here to save their lives.
Ironically, these women, like Zanele, are among the lucky ones: they obtained transport to the hospital, where they can receive temporary relief from their AIDS-related symptoms. Hundreds like them are dying in their homes every day—in mud huts, squatter camps and townships across the country. For them, as Zanele well knows, home based care offers the only solace.
The Need for AIDS Care and Support
More than half of South Africa's mine and migrant laborers come from the rural areas of the Eastern Cape Province. They leave home in search of work, but when they become ill, often with TB, HIV/AIDS, or both, they return home, where their wives, sisters, mothers, or aunts care for them as they die. The help of the home care supporters has made this devastating reality a bit more bearable for families in these already overburdened communities.
Zanele was born in a rural village called Monti and has lived her whole life in this region. She first became pregnant at the age of 16. The father of her children left, as the men in this province do, but he has not returned and she does not know where he is. He may be dead. It is likely that she contracted HIV from him.
After witnessing the overwhelming impact of AIDS on her friends and neighbors, Zanele decided to become a home care supporter for the Bambisanani Project, a local non-governemental organization working to address the need for home based care in the rural Eastern Cape Province. Established with support from Management Sciences for Health's EQUITY Project and Bristol Myers Squibb, Bambisanani works in partnership with mining agencies, private corporations, a local hospice, and the provincial department of health to provide support in regions traditionally neglected by health services. As communities implement interventions themselves—from home based care to orphan identification and placement to income generation activities—they are able to identify and reach areas of their community where the problems are most grave.
After three months of training, Zanele began helping local families care for terminally ill loved ones. Covering vast distances daily, she would walk from home to home, training family members how to alleviate pain, administer TB medicines, and disinfect patient's beds, usually lying on the floors of mud huts.
When Zanele fell ill with TB in 2000, she took an HIV test. It came back positive. Zanele's sense of despair was tempered, in part, by her awareness of the larger-scale tragedy she was witnessing every day. She decided to speak openly about being HIV-positive, using her status within the community to educate others about the disease and to change the way people with HIV are treated. To many families unwilling to acknowledge that their loved ones were dying of HIV, Zanele's openness about her own disease provided a strange comfort.
After two weeks in the hospital, Zanele is discharged. There is little else the doctors can do, and her bed is needed by others. It will be up to her family to provide palliative care in the final stages of her life. Since no one in her family comes to fetch her, a colleague takes the afternoon off of work to take her home. When she arrives, she discovers that her family has spent the total of her meagre savings; there is nothing left for medicine or food.
"I have seen so much suffering—it should have been enough. But now I must suffer more." Zanele's color has improved—or perhaps it is just the bright light shining through the window of her room. She is bed-ridden, and it is difficult to predict when she will pass. She misses her work but tries to maintain a positive attitude about her short future. She does not want to talk of her children—who will care for them? Her family is ashamed of her disease and she worries that her children will be too. Yet, she maintains her selfless attitude: "I only wish I could wake up, walk about and be strong. I miss my work; I must go out and help others."
In many ways, Zanele's story is not unique in South Africa: she is young, female, poor, and HIV-infected. Her children will become another statistic—three of the 11 million AIDS orphans across the continent. At the same time, however, Zanele's story is unusual: she is one of the few who have had access to care. Zanele's example illustrates how one simple intervention—transport—can extend a life. Too many in these rural areas die of preventable or curable illnesses, whether malnutrition, TB, or AIDS, simply because they cannot access health services. For Zanele, death will come within weeks. Even transport to the hospital cannot keep the HIV virus at bay without adequate medicines. Another productive member of South African society will be lost.
In the face of all that she has experienced, Zanele's message is a simple one: "I only wish that people understand why they should care for us. We are still people. We may have AIDS, but we need your support."
Author's Note: Zanele Mavana died on December 6, 2002, shortly after this story was written.