At Ground Zero in the AIDS Crisis, a Very Few Fight, with Little Support, Against Heavy Odds

Fellows Fall 1999

By Kai Wright

June 08, 2009

Africa south of the Sahara has the highest rate of HIV infection per capita of any region in the world, and very few (if any) have the means needed to deal with it. The story of one woman's struggle to set up some sort of information system to work with AIDS patients is inspiring, but also makes it clear how much is yet to be done.

Durban, South Africa -- Mercy Makhalemele hit a low point in the winter of 1994.

That fall, after giving birth to her second child, she discovered she was HIV positive.

After four months, she finally told her husband. Unaware that he was HIV positive as well, he was enraged by his speculations on how she contracted the virus and frightened she would pass it on to him. "He came to work and he insisted that I must come pack my stuff because he cannot stay with anyone who has got AIDS. So everybody heard," she remembers. "I had told him because I was ready. I told him and then he chased me out of the house."

At the time, South African law allowed employers to fire people for being HIV positive. And after her husband's public outburst, Mercy's employers told her not to return.

Homeless and unemployed, with a newborn daughter (also HIV positive), she figured she had no choice but to start fighting. "I suppose it was anger."

Mercy Makhalemele is one of South Africa's pioneer black AIDS activists. Sitting on the beach in her adopted hometown of Durban, reflecting on the difficulties of building an AIDS movement here, Mercy looks tired.

Talking about her daughter always drains her energy. She'd take the little girl to the hospital for one opportunistic infection or another, but medical workers would dismiss her as another body lost to the "slim disease."

"I would say, 'No, you're not telling me that. This child has got bronchitis and all you need to do is put an oxygen tube in her and we're out of here."' Mercy lost that fight; her daughter died in 1995 at two and half years old.

Around one in eight people in South Africa lives with the AIDS virus. The nation is part of a region that is the indisputable ground zero for the HIV pandemic. In 1998, over half of the world's 1.4 million new HIV infections were found in southern Africa. In KwaZulu-Natal, the coastal province of which Durban is the capital, around 32 percent of the adult population, some 3 million people are believed to be HIV positive -- the highest rate in South Africa. The fledgling National Association of People With AIDS opened a KwaZulu-Natal office in 1994 with Mercy as its founding director and sole employee.

NAPWA provides counseling, information, and legal and medical referrals -- generally offering options beyond what Mercy calls the "black spot" of waiting for death. It also advocates for people living with HIV and fights the stigma that discourages people from getting tests and so speeds the spread of the virus.

But, to say the least, the organization is overwhelmed.

Its struggle is not unique. There is no "AIDS bureaucracy" in southern Africa, just a handful of people who see no choice but to fight. While NAPWA gets some money from the government, most groups cannot count on local donors. The United Nations estimates HIV prevention programs alone for sub-Saharan Africa -- not to mention the support NAPWA offers -- would cost around $1.3 billion, about a third of the entire annual budgets of the four countries with the highest HIV infection rates in the world -- all in southern Africa.

Though many Western policymakers have joined in rhetoric about "our brothers and sisters in Africa," they have a lot of catching up to do: UN estimates show all countries spent a total of some $165 million in 1997 on African HIV prevention programs.

The United States budget for foreign aid directed at AIDS programs around the world for 2000 is $325 million -- up $100 million from current funding, but paltry when compared to spending on other humanitarian disasters and to the scope of the epidemic. Rev. Jesse Jackson compared the proposal to "emptying Lake Michigan a teaspoon at a time."

Several proposals could have a real impact by offering funding to forts such as NAPWA-Natal's.

The most promising route appears to be debt relief. Mozambique spends around $20 million a year on health care, but over $70 million on servicing foreign debt. Of the 41 countries classified by the International Monetary as "heavily indebted poor countries," 32 are in Africa.

Others urge Western governments to create a "Marshall Plan" for African AIDS. Thus far, none of these efforts have come up on the floor of Congress.

In the United States, there has been considerable attention to the debate about access to the expensive drugs that have reduced AIDS deaths in the U.S. It's a crucial problem, but for most Africans with HIV, and for those struggling to stop its spread, the pressing concern is money to build organizations and train volunteers to fight the battle locally.

In the few places around the globe where people have battled HIV to at least a near standstill, a politicized community of people living with the virus has led the charge. But in southern Africa, indeed throughout the continent, sparse resources have limited efforts to build any such movement.