NEWS
South Africa's aids
apartheid. IN DENIAL ABOUT A DEADLY FUTURE
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A new and deadly apartheid threatens South Africa's freedom: five million
of its people have contracted the Aids virus and 360,000 more are infected
each year. The public health sector, only resort of the poor, does not
supply antiretrovirals. But HIV positive people, fighting for their own
lives, are also encouraging the nation to resist all forms of
discrimination.
by our special correspondent PHILIPPE RIVIÈRE
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When their visitor asked them about Aids, the children of Dr Mary
Malahlela's primary school in Dobsonville, Soweto, were quick to reply.
"It's a virus," said one. "People get thin, then they die," said another.
"You have to use a condom," chimed in a third, blushing.
For several months now a mural on the school wall has shown the red ribbon
and a condom flanking the ubiquitous prevention campaign slogans: "Aids is
there. It's a reality," "Abstain - Be faithful - Condomise," "My friend
with Aids is still my friend," or, more enigmatically, "Love them enough
to talk about it." Although the children have been bombarded with these
messages since they were very young, they are amazed when Mercy
Makhalemele tells them she has been HIV positive for 10 years. She is so
beautiful, and she danced so well when they were singing a few moments
ago. How could she be ill?
Her story is all too common. "I was a resource manager for a big retail
company. When I was pregnant the second time, I tested positive for HIV.
After I told my husband, the whole thing was blamed on me. He beat me up
and I needed 14 stitches. I was thrown out of the house with our son,
Thaban. The next day he came to find me at work and told me to collect my
things. He said he couldn't live with someone who was HIV positive.
Someone at work must have telephoned my employer because that evening I
was fired."
Homeless and without a job, her story then took a different turn: "My
father taught me that thousands of others experience the same things as
you." Now she devotes herself to making this silent virus visible in
schools, international meetings and the media.
At the Chris Hani Baragwanath hospital, Makhalemele was counselled by a
young pediatrician, Glenda Gray, and an obstetrician, James McIntyre, who
had just started a small perinatal HIV/Aids research department. Nine
years on, it has around 40 researchers - "I spend my time recruiting,"
Gray sighs - and last year it monitored 13,313 pregnant women and their
babies. It is also the centre of the nevirapine scandal that has shaken
South Africa. Housed on the top floor of Soweto's tallest building, it
overlooks White City with its concrete roofs that used to protect the
families of white policemen from Molotov cocktails. Behind the hills
stretch the "matchbox" houses of the township's 1-1.5m inhabitants.
Screening of pregnant women suggests that 30% of young adults there are
infected with HIV.
Nevirapine - a second generation antiretroviral - offers pregnant women a
chance of avoiding passing the virus on to their babies if it is
administered six hours before they give birth. The risk of congenital
infection is halved from 30% to 15%. "When we explain the risks of passing
on the virus during childbirth," says Agnès Fiamma, a public health
researcher, "nearly all women agree to be screened so they can be given
nevirapine if necessary." But until 5 July this year the South African
government systematically opposed what doctors and expectant mothers take
for granted (see box). Apart from nevirapine, the public sector cannot
supply any antiretroviral drug other than for emergency prophylactic
treatment for accidental injuries to medical staff and, more recently, for
rape survivors.
An unsigned 120-page document circulated among leading members of the
ruling African National Congress (ANC) this March shows the scale of
paranoia among the leaders most opposed to such treatment. It accuses
researchers of murder and activists of being in the pay of the
pharmaceutical manufacturers. Twisted logic attributes the death of
presidential spokesman Parks Mankahlana at 36 to the toxicity of AZT; he
was a fierce opponent of antiretrovirals. "Without question some
politicians are infected just because of the numbers," Gail Johnson
stresses. She is the adoptive mother of Nkosi, the nine-year-old boy who
touched people's hearts at the Durban Conference in July 2000. "Aids is
rumoured whenever one of them dies. It might be true, but so what?" she
continues. "It becomes an obsession in this country because no one is
talking openly."
Five million South Africans are infected - but only 10% of them know it.
This means that the continued flirtation of President Thabo Mbeki and
other top-ranking ANC members with "dissident scientists" who deny the
link between the virus (HIV) and the syndrome (Aids) has inevitable
consequences. At the end of April pressure from the international
community and growing internal criticism, from Nelson Mandela in
particular, forced the president to distance himself from the "dissidents
".
Edwin Cameron is a law professor and a former judge at the Constitutional
Court and was one of the first public figures to declare openly that he
had HIV. "The tragedy of denial is that it set us back for two and a half
years because it increased the shame about Aids," he says. "We were just
at the point when people might have been prepared to speak. I expected
that like myself there would be cabinet ministers, members of parliament,
members of provincial governments, entertainers, pop stars, soccer
players, and it hasn't happened. The president's open questioning of the
link between HIV and Aids recreated all the inhibitions. By denying the
simple facts about Aids we recreated the mystique, the horror, and the
shame and stigma. The struggle against silence about Aids is essentially a
struggle for basic human rights."
Celebrities get their health care in the private sector and are afraid of
being accused of racism or betrayal; so they keep silent, leaving the
population in confusion and ignorance. Freedom Day, 27 April, is the
eighth anniversary of the first democratic election. On television, Mbeki
is speaking by telephone with millionaire Mark Shuttleworth on board the
international space station. He boasts that the new South Africa has
opened up opportunities for all, including the possibility of space
flight.
'We are so ignorant'
Meanwhile, down below, the schoolchildren of Soweto are preparing to
celebrate the event in dance. Gandhi Mahlamvu is sitting under one of the
township's few trees. She survives in Kliptown, where she was born 28
years ago, thanks to her grandmother's tiny pension. "People don't go to
information meetings. They think it's a waste of time. You've got flu,
you've got Aids, what's the difference? At Zion church they say they can
cure it by prayer. Some people also say the sangomas (traditional healers)
know of herbs that will cure it." Doctors? "I hope they'll find something
one day. I did hear of something. AZT I think." The nevirapine trial?
Antiretrovirals? "I don't know. We are so ignorant."
In these deprived districts confusion reigns. But Gandhi does social work,
searching the shacks for Aids victims hiding and waiting to die. "If you
say you're HIV positive they treat you worse than an animal. You can't
even go out of the house. Many commit suicide. Some claim it's diabetes
that's making them lose weight." Gandhi quotes the Bible and explains:
"It's materialist thinking that's killing us. Girls like boys who have
cars. That's how poverty drives us into HIV. At home we have nothing. Then
a boy comes along promising everything."
Many South African sociologists and doctors describe a panorama of
"transactional" sexual relations. Without an income, girls cannot afford
taxis (there is no public transport) and are tempted to resort to what
they call a "minister of transport". They may also have their own
"minister of finance" or "minister of leisure". Sugar daddies wait outside
schools with presents - designer clothes or mobile phones. Apartheid
carried machismo and sexual violence to overwhelming levels. For a
population of 43,8m, journalist Charlene Smith quotes a figure of 1m rapes
every year. This violence goes some way to explaining the speed with which
the epidemic has spread in the country (1).
Although the Aids explosion came later than elsewhere, it has also been
more violent. There are hundreds of thousands of orphans; projections show
there will be 1m in 2005 and 2.5m in 2010 (2). That is just in South
Africa. Newspapers are already writing of gangs of street children turning
to violence and asking how the country will cope with such a disaster. But
such threats mask the reality in which those most affected have to live.
Most children have problems simply obtaining their parents' death
certificates or even their own birth certificates, according to Linda
Aadnesgaard. She runs a programme to help orphans in Pietermaritzburg, the
small capital of KwaZulu-Natal. "Forty-nine per cent of South African
children don't have birth certificates. That means they don't officially
exist and can't access social grants or get school fees exemption."
Housing problems, hospital waiting times, shortage of medicines, police
who refuse to take complaints of rape, the need to take the state to court
to get necessary papers, lost social security files: these urgent,
ridiculous problems consume energy and resources. People who are HIV
positive are therefore beginning to raise demands far beyond the question
of medical treatment: the rebuilding of public services, access to an
unconditional basic income of 100 rand (10 euros) a month, workers'
rights. They are in the vanguard of all these struggles.
'Dying like fleas'
"In 1990 only 1% of pregnant women in KwaZulu-Natal were HIV positive,"
says Dr Paul Kocheleff, who runs the HIV clinics at Pietermaritzburg's
city and township hospitals. "Today it's 36%. About half the hospital beds
are occupied by people with Aids." After passing through the fertile
fields of the big white farms of Natal, the road winds through the Valley
of a Thousand Hills to the coast. Not one of the households living in the
small family shacks that dot the landscape is untouched by Aids. Probably
80% of young adults are infected. Here, the South Africans say, "people
are dying like flies". But the death rate, which lags five to 10 years
behind the rate of infection, is still rising.
Kocheleff says there is an urgent need to rethink the health care system
because it will be unable to cope with the hundreds of thousands of sick
people there will be in the future. "Hospitals, health centres and
dispensaries aren't using their resources properly. The most seriously ill
patients aren't landing in specialist services, and these are overwhelmed
with patients who only want a prescription. The scale of the epidemic
calls for novel solutions. We want local communities to take
responsibility for preventing the most common opportunist diseases and to
monitor the basic clinical indicators. They would then send us the
difficult cases." Basically, what is needed is to "build a network capable
of reaching the greater part of the population when antiretrovirals
finally arrive."
Too expensive for the poorest countries, these drugs are at the heart of
the debate on globalisation. Can patents take precedence over the right to
life? What are the criteria for a "health emergency" that will allow
generic medicines to be manufactured or imported? (That would bring about
competition between manufacturers and force down costs.) At the trial in
Pretoria in April last year, the government inflicted a humiliating defeat
on the South African Pharmaceutical Manufacturers' Association (PMA).
Backed by the Treatment Action Campaign (TAC), it was defending a draft
law on the use of generics. But the law has still not been promulgated a
year after the multinationals were routed. The PMA is even threatening to
take Medscheme, one of the largest private insurance funds, to the
competition commission; Medscheme has tried to anticipate the law by
encouraging the use of generics instead of "branded" drugs.
Zackie Achmat is fuming as he explains how the health ministry has just
announced in a two-line communiqué that parliament will have to examine
the law again. "That will lose us another two years!" he says. Achmat has
led the TAC since its formation nearly four years ago (3). It is a
grassroots social movement that is sweeping the country. "We're sometimes
described as a little group of former Trotskyites," he smiles, "and some
of us are (4). But this campaign is really a popular movement backed by
the churches, trade unions, health workers and quite a number of ANC
members. We've thousands of members in Cape Province as well as in Gauteng
(the province where Johannesburg and Pretoria are located) and KwaZulu-Natal.
In Gugulethu, a township suburb of Cape Town, our meetings are chaired by
the pastor's daughter and start with prayers."
During the Mandela years (1994-99) Mbeki's liberal strategy (privatisation,
budget discipline, the free market) prevailed in the ANC over a more
interventionist trend that called for nationalisation and more ambitious
social investment. Although the country's wealth increased, unemployment
soared. "The epidemic is going to increase the differences in revenue,"
according to Paul Hartdegen from the South African branch of the
investment bank J P Morgan, the author of a detailed presentation on the
impact Aids has on the economy. "A household on a moderate income will
have to keep sacrificing more and more of their disposable income on their
health charges. On the other hand, for the employers, the cost of medical
insurance, including treatment, is handled perfectly well. For example,
the cost per ounce of production in the goldmines will be no more than
0.5% of the current price." Aids is known to flourish where there is
inequality; the study shows it is also one of the main causes of
inequality.
Are the poor entitled to the same medicines as the rich? This simple
question from the TAC has a particular resonance in the country of
apartheid. When treatments exist and are available in private clinics, why
are they not provided in public hospitals? How can a public health system
be built that is capable of coping with this health disaster?
"Another unknown aspect of our work is scientific literacy for patients,"
says Nathan Geffen, the campaign's national coordinator. "When people
who've had contact with TAC go to hospital they're more demanding and know
which drugs they need. They're also better able to cope with the disease."
Most TAC members have joined since August 1999 when Médecins sans
frontières (MSF) set up its mother-child transmission prevention programme
in Khayelitsha.
This vast shantytown surrounded by dunes is where the regime "rehoused"
the residents of several Cape townships in the 1980s. Its 500,000
inhabitants are cut off, and the only infrastructure is a small
supermarket, a service station and a clinic in the "town centre". That is
where TAC and MSF share offices in the only two-storey building.
Dr Eric Goemaere says that when he came to the TB (tuberculosis) prefab
behind the clinic three years ago, the population "was in complete denial.
They didn't know the difference between HIV and Aids. 'If I'm not ill, I'm
not infected'." The Belgian MSF doctor took over a programme to prevent
mother-child transmission that had been abandoned by medical staff with no
faith in antiretrovirals; following trials, he was able to offer treatment
to the most seriously ill patients. "Two hundred and twenty people are now
receiving treatment. Every month a committee of doctors and local people
enrols about 15 'clients' after assessing their state of health, their
attendance record at the clinic and their family responsibilities, etc."
Goemaere shows us two boxes of tablets - nevirapine 200 mg and a
lamivudine 150 mg-zidovudine 300 mg mixture. The label carries the Far-Manguinhos
brand name: these are the generics that TAC activists import from Brazil.
"Some patients have come back from hell. Their CD4 rate had fallen to 15
(the critical threshold is 200). Their viral load can't be detected now.
This week we're celebrating a year's treatment. Without it they'd all be
dead. If it works here it can work anywhere!" the doctor says with
satisfaction. "But the most important thing is its impact on the
community. The HIV Positive T-shirt has become a fashion accessory in
Khayelitsha. People are talking more openly and there are 22 support
groups." Aware that they are breaking new ground, most of Khayelitsha's
"clients" are involved in prevention work in schools and factories or on
television.
Will economic and health apartheid result in another popular uprising in
South Africa? Many believe it has already begun and that the TAC
experience will serve as a catalyst for the country's social
reconstruction. Epidemiologist Quarraisha Abdool Karim coordinated the
fight against Aids when Nelson Mandela was president. Speaking at the
Durban school of medicine, she said she was now optimistic for the first
time. "You don't get used to seeing the people you've fought for dying.
But treatments now have fewer side effects and are
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