AIDS: A multifaceted South African crisis
By Erica Terry

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JOHANNESBURG - It's Wednesday morning at Chris Hani Baragwanath Hospital in Soweto -- the world's largest public health facility -- and once again 26 year-old Florence Ngobeni is struggling to raise her audience to political action.

The pregnant women listening to Ngobeni speak are all HIV positive. Some live nearby in one of the 29 disparate neighborhoods that make up this scattered and legendary township. Others have traveled hundreds of kilometers from rural areas in provinces like Kwa-Zulu

Natal -- a former homeland battling to overcome its apartheid past.

Despite their varied circumstances, all 28 of the women present hope that she will be one of the lucky ones able to avoid passing this dreaded virus on to her baby.

Ngobeni, a counselor in the HIV perinatal unit, criss-crosses before the long row of women telling them that the drug that can help -- AZT -- is in desperate short supply.

Moving her hand from her belly to her breast, Ngobeni asks the women, "Do you know what is AZT?"

Ngobeni asks the rhetorical question again and again in many native tongues. Sometimes her words are punctuated with the clicks of Xhosa or just exasperated pauses.

"Because of our minister Zuma, we don't have AZT," Ngobeni says.

"Is it okay that you don't have it? Eh, mama? Is it right?" Ngobeni

asks.

"It's not right," she answers for the crowd.

"The government is charging us weight [a tax] on every item we buy so where is this money going?" Ngobeni asks the group.

The only woman to speak up is 26-year-old Kate Mpungose. With her swollen belly hanging between her legs, Mpungose leans forward and in Zulu asks, "How can we vote for a government that doesn't care for us?"

On the eve of South Africa's second democratic elections, dramas like these are being played out all over country and the issue of AIDS prevention has become the center of a political and social war being waged for the nation's future.

In a country of 40 million, it is estimated that one out of every eight people is infected with HIV/AIDS. One million of those victims are children. Everyday, in Soweto alone, one in three babies is born with the virus that causes AIDS.

If South Africa is to avoid losing most of a generation, something must be done to halt the epidemic.

But, neither doctors nor the ANC-led government can agree on how best to beat back this killer and the social mores that are helping it spread.

For the black government to win the war against this viral menace, it must not only attack the disease, but a whole host of socio-political issues. To fight AIDS in South Africa means combating ignorance, poverty and the legacy of apartheid.

In the struggle to educate people about AIDS, Dr. Nono Similela, director of AIDS and STD's for the South African Ministry of Health says, "You need to realize that not everybody is literate out there. So if you put messages on billboards, if you make pamphlets, you still are not reaching the lowest of the low."

"We are charged with looking at everybody -- the ones who are already dying, the hospitals that are overcrowded," Similela adds.

"Look at where we are coming from. Look at the average woman in Kwa-Zulu Natal. They've got no water. They've got no food," Similela says, "Poverty, social deprivation, these are the things we have to address."

Similela says, "People are worried about issues of survival, not their well-being in five years."

It is difficult for many to imagine that in South Africa -- sub-Saharan Africa's most developed nation -- basic human needs are still not being met fully.

Because of its position on the continent and its troubled past, South Africa's political climate is such that every move the government makes is carefully scrutinized. Everyone from its own citizenry to the non-governmental organizations and foreign powers lending aid and relying on South Africa's support has an opinion on how the ANC

should run the country's affairs.

And with the number of AIDS cases in South Africa nearly doubling since 1990, the country has been on the world's radar screen for its handling of the disease and Similela for one is tired of it.

"Suddenly this disease is making everyone so moralistic about how we are treating and what we are doing," Similela says.

She accuses the members of the National party -- the former architects of apartheid -- of expecting too much of the new government and not doing their share to fight the disease.

"We are expected to transform, to handle that we are coming out of an apartheid era, to handle just being in governance and the fact that we are dealing with other races." Similela says, "I haven't heard a single candidate whether from the NP or any of the other parties

talking about how the AIDS epidemic is going to decimate this country

because it's a black thing."

"No one focuses on that," Similela says.

While Similela and the government fight against these larger issues in political backrooms, physicians like the head of Baragwanath's HIV perinatal unit, Glenda Gray are on the front lines.

The HIV perinatal unit at Baragwanath hospital is one of five sites in Guateng province where HIV positive pregnant women are being given the drug AZT. This effort is part of the Petra study, a pilot research program aimed at reducing the nation's 30 percent mother to child HIV/AIDS transmission rate.

As part of the program, women must also formula feed their babies to reduce the risk of transmitting the virus through their breast milk.

Of the 240,000 babies expected to get the HIV virus from their mothers this year, ten percent will contract the illness through breast feeding. Beyond South Africa, it is estimated that this form of transmission accounts for 7 percent to 14 percent of HIV/AIDS

cases among children.

Forcing South African women to give up breast feeding presents another set of problems.

According to Dr. David Woods, Professor of Pediatrics at the University of Capetown and Head of the Neonatal Medical Unit at Groote Schoor hospital, the most common cause of death among South African babies in the first year of life is gastroenteritis -- diarrhea.

"The only complete protection against that is breast feeding," Woods says.

In rural communities, where nearly 50 percent of South Africa's HIV/AIDS cases exist, safe running water is a commodity and the cost of formula is exorbitant, especially for women in a country with an unemployment rate of more than 30 percent.

Even in Soweto -- a community on the rim of Johannesburg -- families cannot afford to buy formula.

Women in rural areas also face the issue of access. Even if they can afford to buy formula, the nearest store might be 10 to 15 kilometers from their homes. Transportation is another limitation for these women because public transportation is almost non-existent and they

cannot afford to own their own cars.

Asking women to bear this financial burden in a nation where it is not uncommon for children to be breast-fed up until three and four years of age, is almost unthinkable.

Little salvation is found in formula donations which present a political hurdle for doctors because of the industry's tumultuous history. Formula companies like Nestle have repeatedly come under fire for promoting artificial infant feeding among African mothers

which resulted in a 1977 US boycott of the company.

Gray and her staff are not allowed to accept donations of breast milk substitutes. At best, her staff must buy in bulk from a different supplier each month and offer the product at cost to the women participating in the study.

Gray's need to find affordable infant formula for her patients has been eclipsed by an even more pressing need.

The supply of AZT at Baragwanath hospital's HIV perinatal unit is almost tapped out because at the end of last year the South African government decided to stop funding the Petra study.

The government sites budget constraints, equitable distribution of resources and limited findings as the reason for its decision.

"Our budget is 57 million and the cost estimate given [for supplying AZT nationwide] is 80 million. It's much more than you even have for all of the medical programs that the government department of health is to provide," Similela says.

Similela, a trained OB/GYN, defends her boss health minister Dr. Nkosazana Zuma and the decisions of the ANC government.

"Because you can't discriminate, it means you are going to have to provide AZT to everybody," Similela says.

Beyond the issue of equity, Similela is skeptical that AZT will have the desired effect given that use of the drug in a breast feeding population only reduces transmission by 37 percent.

"So you still have a certain percentage of women who will transmit the virus to their babies despite your efforts," Similela says, "You've got to make sure that whatever resources you have you don't throw them into a bottomless pit."

So this Wednesday as they have done every week since the funding dried up, Gray and her staff huddle around a brown cardboard box, counting what is left of their stock of AZT. The pills are so precious, that they count the 100 milligram tablets down to the half

bottle.

"43 and a half," Dr. Violai Avy announces. That means that Gray has enough AZT to start seventeen more HIV positive women on the four-week regimen of three blue tablets two times a day for the last month of their pregnancies.

"We can't take too many women at the same time. If we put 100 women on it might only last a week," Gray says, "We are holding out hope to some women and none to others."

Gray is outraged by her predicament and the health ministry's stance. In December she filed suit against the government.

"No longer are we researchers. We are activists taking the government to court," Gray says.

Gray is making her presence known in the courts and on the political landscape.

Gray designed the black and white photocopied "No AZT, No Vote" sign that stands out among the pamphlets and colorful AIDS awareness posters in her office -- proving once again that in the fight against AIDS, Gray is as she repeatedly says "an activist first and a

physician second."

She hopes the slogan will become a rallying cry for the ill-fated women she sees at her clinic. She wants the women to let the country's health minister, Dr. Zuma know that they will fight to get AZT.

But not one of the 28 HIV positive expectant mothers at Ngobeni's Wednesday morning support group has attended any of Gray's anti-Zuma protest marches and rallies in Guateng province.

"We have done this type of march three times and no pregnant women showed up," Ngobeni admonishes the women.

"You don't come because you are scared you will be identified, scared your neighbor will recognize you," Ngobeni says, "but you will have a dying baby on your hands because of AIDS.

Like many of the women, Ngobeni knows the ravages of HIV/AIDS firsthand. She lost her husband and her daughter to the virus four years ago and is herself suffering from the disease.

But, even Ngobeni's example cannot convince women like Mpho Moloi, a 25-year-old support group member, to share her story with family and friends.

The stigma associated with AIDS is so great that HIV positive women live in fear that friends and family members will find out they have the virus.

Gray calls AIDS the new apartheid. "Before they were discriminated against because they were black now that are discriminated against because of HIV," Gray says.

So women like Moloi suffer in silence. "I haven't told anyone at home. I'm afraid. If you have HIV people will reject you," Moloi says.

"They treat you like you've been sleeping around, doing ugly things. I got this virus sitting at home. I didn't expect them to tell me I was HIV positive," Moloi says.

Like many of the women who come to Baragwanath, Moloi only found out her HIV status when she became pregnant. Once she told her partner about the baby, he left her. She has not had any contact with him since.

Even though Moloi believes she contracted the virus from her child's father and she is aware that he is having a baby with another woman, she will not tell him her HIV status.

"I don't know what to do, but I want to stop him," Moloi says, "I really want to help, but I don't know how."

Moloi may be able to keep the rumors about her condition at bay while she is pregnant, but once she gives birth, she will have to concoct another set of excuses to explain why she has chosen not to breast feed her baby.

Not breast-feeding along with being skinny have become tell-tale signs of HIV status in South Africa's AIDS hysteria.

Moloi plans to blame the doctors, saying they told her that her milk is sour.

In spite of her dire financial situation, Moloi is adamant, "I don't know how I will get the milk because it's too expensive, but I won't give my baby my breast," Moloi says.

With all of these machinations Moloi is not simply trying to protect her reputation, but the fate of her unborn child as well. "When my mother finds out I died of this HIV will she take care of my baby?" Moloi asks.

Gray tries to sympathize with the women's predicament.

"It's a double edged sword. On the one hand they should tell their partners. But, dear they disclose [their condition] they face being chucked out of their homes and being ostracized," Gray says.

But she is still conflicted by their decisions and her role in the process.

"It's abhorrent," Gray says, "Sometimes I feel like I am an accomplice to murder because I am not strong enough to get the women to disclose."

Similela believes that the same dynamic that makes women unable to reveal their status, also makes it difficult for them to prevent the initial spread of the virus.

"Even if I give a woman a condom. Even if I empower her, the power relations are such that she cannot negotiate if she's dependent on this man for money," Similela says.

Mpungose agrees with Similela that men are in control when it comes to South Africa's bedrooms. Mpungose says women asking their partners to wear condoms are likely to be met in the sweetest African lilt with these glib replies: "Can you eat a sweet in a plastic? Can you take a shower in a raincoat?"

Moloi was a victim of such sweet talk and now she is dependent on her mother who makes fifty rand a month -- less than ten dollars -- for survival.

"I don't know where I am going to get money to buy clothes and I only have a month to go," Moloi says.

Although her partner will not take responsibility for their child, Moloi fears that she will not be able to get formula at a discounted price because her child's father is employed.

Although, Similela recognizes the cultural and economic forces working against HIV positive mothers, she ultimately believes preventing the virus is a matter of choice.

"At the end of the day, this disease is about behavior. I can't buy people into changing their behavior. We need people to realize this is a preventable illness, but only if we make the right sort of choices for ourselves," Similela says.

But women like Moloi believe the right choice for the government to make would be meet the demand for AZT.

So Moloi holds out hope that there will be enough AZT available for her when she reaches her thirty-sixth week of pregnancy and she is quick to criticize the hypocrisy of Minister Zuma's stance.

"If you have STD's she give you medicine freely. If you have HIV, she doesn't want to give it to us," Moloi says, "It means she wants our babies to die."

And Gray insists that rationing of AZT would end if the Health Ministry would simply allow doctors and hospitals to get their supply of the drug from other sources.

Gray has secured a donation from UN AIDS that would supply her staff with enough AZT for the rest of the year, but the Health Ministry will not give permission for her to accept the gift.

In response to Gray's charges Similela asks, "Why must donors come to save us from dying? Let them sell the drugs cheaper to us."

Similela worries about the government being dependent on donors to provide AZT -- a practice Similela maintains the government would not be able to afford on its own.

The Health Ministry has been in a war with drug companies like Glaxo-Wellcome to make AZT less expensive.

And while the company has cut its prices, Similela says it is not enough.

"They are talking dollars. They are not talking our money," Similela says, pointing out that even with the cut in price, it is still more than South Africa can afford.

Gray believes her patients are being put at risk while the Health Ministry tries to strong-arm the drug industry and overlooks the generosity of the non-governmental agencies willing to help pay for the drug.

Similela says, "I'm okay with donors coming in saying, What's the best we can do?' without being judgmental -- to be open minded."

But, Gray cares little about the government's plight. The health ministry does not "see the cold face of the epidemic," Gray says.

Every Thursday morning Gray hears the voices of HIV positive mothers, three rows deep filling her waiting area with prayers in Sesotho and Zulu. They come to Gray's office for their children's weekly check ups. On this particular Thursday, two of the sixteen women will find out if the AZT regimen they took while pregnant was successful. As they wait they sing in English "thank God for the days of my life."

The women must wait until their children are at least a year old before they will know for sure what their youngsters' status is.

This day, Julia Phali and her twins sit in Gray's office -- singing and waiting.

Phali will not find out for another two weeks whether or not she passed the virus on to her 13 month old son, Lehlohonolo and daughter, Lerato.

Nonetheless, she is hopeful. "We are healthy," Phali says.

And she is grateful to have been a part of the Petra study.

"It's important to get AZT as a single mother. I don't know who is going to be caring for my children. If AZT is there maybe they will be older so they won't have so long to go without a parent," Phali says.

For Gray the hardest part of her job is dealing with "children who get infected when their mother's have tried so hard."

"They have done everything by the book and their children still get infected," Gray says.

Similela, herself an OB/GYN, still stays focused on the larger picture.

"One needs to understand that the provision of AZT doesn't just start and then it's over. There are a lot of things that go with interventions like that. Every pregnant woman must be tested," Similela says.

The government must provide pre-counseling and post counseling on a national level Similela adds.

"You've got to provide breast milk substitutes for the women. You've got to provide bottles, clean water, energy to boil the water. So all of these logistics have to be looked at if you are to have an intervention of that nature. And what the government is saying is

that at this point in time, the infrastructure is not there."

Professor of Pediatrics at the University of Capetown and Head of the Neonatal Medical Unit at Groote Schoor hospital, David Woods sees both sides.

He agrees with Similela that a lack of infrastructure makes it unfeasible to create service programs like the Petra research study for the entire country.

"That problem is almost insurmountable. To get a program like that in this place would cost millions of rand," Woods says, "You can't buy the answer with money. You can only do it with development."

However, he does not think this bleak outlook gives the government cause to throw up its hands in defeat.

"The problem is so huge it's easier to pretend it's not there," Woods says, "so what we need is a compromise."

"I don't think there is one magic answer for the whole country," Woods says.

"The compromise is a different answer for urban people and a different answer for rural people," Woods says, "This is not politically correct because of the problem of equity. In the ANC manifesto, equity is terribly important, but we all know equity is an

ideal. It's not a reality and the only way to have equity is to bring everything down to the lowest common denominator which basically just destroys the whole country."

Woods sees the combating mother to child HIV transmission as one of the few areas in which the government can make headway in fighting the spread of AIDS.

"Maternal to child transmission -- there we can make a difference because we've got a captive population. We have women who are highly motivated because they are pregnant. They are in the health care system and your intervention is only over about a month. And that is very different than trying to alter the sexual behavior in the

general community," Woods says.

"And I think this may be the tragedy of South Africa the one place where we can make a difference we are not putting our money there," Woods says, "We are putting our money on the wrong horse. We are putting tens of million of rand into general education of the public and I don't know that it makes any difference at all."

Woods is equally pessimistic about the government's motivation for not continuing this type of research.

"What makes good health sense might not make good political sense and I'm worried with AZT that they are really playing the political game and not the health game," Woods says.

Woods believes there is enough of a health care infrastructure in South Africa's urban areas for the government to provide AZT and breast milk substitutes to HIV positive women. But it would be political suicide for the ANC-led government to propose such a plan

because South Africa's urban areas are racially mixed and the rural areas are almost entirely black. The government would be accused of catering to white interests in the nation's cities.

"And again, in South Africa, because of our history you have to be terribly careful that things aren't labeled in a race way," Woods says.

To Woods' charges Similela says, "I've never been somebody with a political inclination and I get terribly emotional when I think politicians are not thinking."

"I'm passionate about pregnant women. I had to expand my brain beyond child care for me to be able to sit here and say to myself at this point, this where we have to be as a unit," Similela says, "If there is a political agenda here, than I am uninformed."

While the doctors and the politicians battle for control and try to gauge one another's motivations, women like Mpungose and Moloi are stuck in the middle.

And Woods has his hopes pinned on them.

"My guess is that in the long run the answer is going to come from women...I think it's going to come through black women's education and empowerment," Woods says, "It's going to have to come from ordinary barefoot women who are at the bottom of the pile...and they are going to need a messiah."

Ngobeni is no martyr and her charges at the Baragwanath support group are not barefoot, but they may be the best hope for South Africa's future.

Woods adds, "I think in a bizarre way, the AIDS epidemic, may actually have one good spin off in that it will impact on the way women behave as a collective."

It does seem to be having that effect on the women at Baragwanath hospital.

"Those I am talking with are changing me,” Moloi says, "It is as if I don't have this because of this group and the support I get here."

And even though, Mpungose still has not told her former lover that she is positive and she's still afraid to come out to family and friends, she says she will attend the next rally to demand AZT.

"I think we have to talk to people -- even if you don't tell them your status -- you just must talk to make them aware of it [AIDS]."