Communities fight against AIDS in South Africa

By Chris Hufstader
Maria Mogale (center) with her daughter Portia and mother Priscilla.

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Maria Mogale is the first to stand up and speak to visitors who approach her and a small group of patients eating a lunch of sorghum and chicken feet in the shade of a tall tree. It is hot but she has energy, she is the kind of woman who looks you in the eye when she speaks with you, conveying a certain strength despite her frail, slight frame. She says that less than two years ago, she was in an entirely different state: "I was vey ill, bedridden, and skinny—I was unable to even feed myself." Now she is still thin, but she is out of bed and standing tall.

Mogale, 37, is open about her status: she has been HIV positive for two years, and she is living with it. After all, she is doing better now and hopes the worst is behind her. "Now I am really fit compared to when I was sick—I can go a long distance walking now," she says. She regularly walks about one and a half miles to the headquarters of Pholo Modi Wa Sechaba, a community organization where she is part of a support group for people living with HIV/AIDS in her village of Welgavel.

Pholo Modi Wa Sechaba helped get Mogale out of bed and back on her feet. The organization sent a home-based care worker to nurse her, help her get to the hospital for treatment, teach her how to take her antiretroviral medication and manage her diet, and file for a government support grant—a source of money for disabled people.

Local Groups Leading the Struggle

Pholo Modi Wa Sechaba—meaning "health is the root of the nation" in Setswana, the local language—has about 21 caregivers serving 240 patients in four villages. They ensure that patients are taking their medication; they cook and clean, and disinfect and dress wounds from the many infections that bedevil those with an immune system compromised by HIV. In some cases they deliver food parcels to help families survive.

Pholo Modi Wa Sechaba is just one of thousands of local community based organizations helping the roughly 5.5 million people living with HIV/AIDS in South Africa. They are on the front line of the struggle, and play an essential role in providing services. "Community-based organizations are key in the fight against HIV/AIDS," says Gerard Payne the affiliate coordinator at the AIDS Consortium, an umbrella organization for the thousands of such community groups around South Africa. "Without them the fight against HIV and AIDS is a mere media campaign. They provide essential services in the community, they speak the language, and they understand the cultural issues in the communities."

Oxfam America is working with the AIDS Consortium to provide training and other support to community based organizations like Pholo Modi Wa Sechaba in South Africa's North West Province, one of the poorest areas of the country, with a high incidence of HIV/AIDS. The AIDS Consortium is working with 47 local community based organizations in the North West, and with funding from Oxfam it can expand its efforts to some of the 150 others struggling against HIV/AIDS in the province.

Pholo Mode Wa Sechaba helps patients get tested for HIV and, when patients test positive, counsels them on their treatment options and on how to "live positively." In addition to its home-based care program, it has a daycare for young children and an after-school program for orphans and others who need a place to do their homework and learn valuable life skills including how to prevent HIV.

A New Way of Life

Learning that you are HIV positive forces you to think about everything differently. Just having to share your status with your family is enough of a crisis for many newly diagnosed people. They then must struggle with how to live with what may at first seem a death sentence, how to make ends meet if they are too ill to work, how to endure the side effects of the medication, and how to manage the stigma of being HIV positive.

South Africa's health care system, while free, is overburdened and does not provide adequate social support for people living with HIV/AIDS. They can be tested, learn the result, and get a CD4 count (a measure of the blood cells that support their immune system). Many get free antiretroviral medication. But then they are really on their own—and if they lack a support system of family and friends, as many do in communities already ravaged by the disease, these patients are in crisis.

Pholo Modi Wa Sechaba helped Maria Mogale with these struggles, and helped her understand her treatment options. These are the most important lessons the organization teaches people in the community, particularly valuable to women who are sometimes excluded from health care options owing to poverty and discrimination—a violation of their right to health care. Family members may insist on traditional medicine, which frequently delays treatment, and can often hasten death.

Mogale learned this from Pholo Modi Wa Sechaba: "If people are sick, they need to go to the hospital, and not just stay at home and say they are bewitched," she says at her home, a three-room house made of metal sheets outside Welgavel. "I tell people, 'AIDS is there, but you can get better.'" She smiles as she speaks.

Mogale is a strong, positive example for members of her community—and this strength, tragically, is also a good example within her own family. Her daughter Portia, 18, learned she was HIV positive two months ago, and her 60-year-old mother Priscilla, who lives nearby, is also in treatment. Both are now thinking about their lives differently as well, and look to Mogale for advice on how to live and think about their future. Portia is in her second to last year of high school and is considering higher education, even as she is still learning what it means to be HIV positive.

For Maria Mogale, her future may involve helping others on a more formal basis: she wants to work with Pholo Modi Wa Sechaba. "I want to become a caregiver, and teach others what I have learned."