Sunday Times (Johannesburg) - November 25, 2001

The first news of a sudden rise of infections among young gay men appeared in the New York Times in June 1981. It stemmed from reports by the US Centers for Disease Control.

Doctors were diagnosing infections previously seen only in patients whose immune systems had been severely weakened by illnesses like cancer.

Out of this grew the awareness of a new syndrome and the beginning of the history of a disease that has taken hold of the public imagination like no other.

From the start Aids was cast as an illness that discriminates. Since it was sexually transmitted and because it started off in communities that were marginal , most people didn't care and governments were slow to react. The desperation for a cure, that failed to arrive, created an industry out of Aids that served to reinforce stigmas rather than dispel them.

Two years after the start of the "gay plague", it was becoming clear this disease was not limited to gay men, and was spreading fast.

By 1986 it was apparent the infection spread mainly through sex and could target anyone. Condoms became a means of survival.

Writing in Defiant Desire, John Pegge recalled that, in 1983, while setting up a counselling service for gay men in Cape Town, a visiting doctor warned him of a new disease in cities like San Francisco.

Pegge was amazed. "We hardly had the resources to keep together a telephone counselling service and he was asking me to bother about a strange new disease reported among a handful of gay men in the US.

"I did not take him seriously . . . and anyway, medical science was such that there was bound to be a cure around the corner."

One year later, Pegge met his first Aids patient when a 23-year-old SAA cabin attendant visited him. It was also his first encounter with the reality of the stigma of Aids.

The young man died within weeks. At the provincial hospital where he had sought treatment "he had been made to feel like an unwanted criminal, a leper. He and his lover had told their friends and now they had none.

"The day he died we learned the cruel extent of the horror awaiting us," writes Pegge.

"We could not find an undertaker to remove his body or a Catholic Church in which to hold a Requiem Mass."

By 1991 he had seen 139 young men die of Aids, out of 1 000 who were infected.

Pegge, who later became infected with HIV himself, writes: "Aids may well be a virus and a devastating syndrome of frightening illnesses, but it is also the trauma and terror of lovers being separated prematurely by death in the prime of their lives and of children dying before their parents.

"With Aids, as never before, I have seen the bravery . . . and the loneliness of a people discarded as the flotsam of the world."

Because of a shortage of blood products in the early 1980s, Johannesburg Hospital imported them from the US. The supposedly life-giving fluid turned out to be lethal and more than 80% of haemophiliacs being treated at the hospital became infected.

For the Del Frate family, it was a time of tragedy. Their 13-year-old son Marcello was the first South African child to die from Aids after a blood transfusion. Their elder son Giovanni died later.

The epidemic brought with it many first victories and precedents. HIV-infected Nkosi Johnson and his foster parent Gail Johnson fought for his right to attend a primary school while Barry McGeary, a Brakpan businessman, went to court to fight for the right of HIV-infected people to confidentiality.

In South Africa, an estimated five million people are infected with HIV. Young women are particularly vulnerable - not surprising when considering how society's expectations of male and female behaviour differ with men, in most cases, having control over when, where and how sex takes place.

One reason why South Africa has one of the fastest-growing epidemics in the world, says Professor Hoosen Coovadia, head of Natal University's Department of Paediatrics, is that "simply put, the epidemic hit us at the wrong time".

"Aids hit in the midst of a complex political transition and society was just not stable enough to deal with it.

This had an important bearing on the first few years, which were critical in dealing with the disease.

The figures bear him out. In 1990, the proportion of the population infected with HIV was less than 1% - the same as in Thailand. By 2000 it had grown to 12,5%.

By comparison, Thailand's was 1.5% last year - the result, say experts, of a drive by the Thai government.

Aside from being politically ill-equipped, other factors that have contributed to susceptibility include a high rate of sexual violence and sexually transmitted diseases, and resistance to condom use.

Added to that, says Professor Salim Abdool Karim, formerly of the Medical Research Council: "As the country's borders opened, a number of different strains were brought in and spread simultaneously."

Clearly Aids is everyone's problem . Neither skin colour, nor money or social standing provides protection. But despite this, denial remains a key response. Experts estimate nine out of 10 people who are infected don't know they are infected, and the government is moving at a snail's pace to introduce voluntary testing and counselling.

Florence Ngobeni's experience mirrors that of hundreds of South African women. Ngobeni, a counsellor at Soweto's Chris Hani Baragwanath Hospital, says: "At three months my baby girl Nomthunzi became ill. It was only when she was tested for HIV that I found out I was HIV-positive. My partner George, the father of my child, died of Aids in the same month. People used to come to my house to see a child who was dying of Aids. It was heartbreaking."

Nomthunzi died in February 1997. She was five months old.

Martin Vosloo, who "came out" as HIV-positive and now works for Eskom as a peer educator, says that in the circles in which he works "a lot of white people still have the perception that [Aids] doesn't belong to them".

But a study by Mark Colvin of the Medical Research Council found that more than 2% of white South Africans are HIV-positive, a figure much higher than those for white populations in Europe and the US.

The study, the first published data on race groups other than Africans, found that the proportion of people infected with HIV was just over 2% among Indians and 3% among coloureds.

Dr Clive Evian, a Johannesburg HIV/Aids workplace consultant, believes there will be only a gradual increase in HIV among whites.

"The lives of white people have not been subjected to the same disruption of family life and socio-economic instability that black people have."

Vosloo is part of a small but growing group who have had the courage to publicly state they are HIV-positive. It's not an easy thing to do.

Declaring her status got Gugu Dlamini, a Kwazulu-Natal Aids activist killed. For Mercy Makgalemele, coming out publicly resulted in her being assaulted by her husband and thrown out of her home and her job.

Edwin Cameron, an Appeal Court judge who went public in 1999, says: "With other fatal illnesses you get concern. With Aids you get stigma, denial and fear."

No person has embodied this sense of denial more than President Thabo Mbeki. Behind a veil of academic scrutiny and critical thought he has derailed any attempts to deal decisively and compassionately with this epidemic.

From his pronouncements on the toxicity of drugs to his courting of dissident scientists who question the link between HIV and Aids - one South African expert who was invited to join Mbeki's panel on Aids recently spoke of feeling "humiliated by being asked to take part in an exercise of such stupidity" - he has written off the five million South Africans already infected.

His intervention has introduced a stasis on the government's part, something that Cameron has referred to as a "crisis of truth about Aids", a "denial, obfuscation and evasion of the truth that paralyses our nation".

In fact, the government's disastrous attempts - which include the Sarafina II stage production, and Virodene - at dealing with this epidemic have been far outstripped by those who, with meagre resources, are having to deal with the impact of Aids on their lives and communities.

Zackie Achmat of the Treatment Action Campaign - an organisation fighting to secure the right to treatment and care - says:

"No one in government has had the courage to say publicly that the President is wrong. We need to break the taboo of questioning the President and it's not going to happen with gentle nudging."

In some circles there is talk that Mbeki's failure to tackle this disease head-on is nothing short of genocide. Other government officials also have much to answer for.

Recent reports of Aids budgets going mostly unspent stand in sharp contrast to the pleas of public doctors for more resources, more training and access to the most basic drugs to treat HIV-related infections.

And what's it like living with HIV? If you can afford the costly treatment, Aids is becoming more manageable. If you can't, it is a wasting disease that brings untold suffering and early death.

As this year draws to a close the Treatment Action Campaign will fight the government in court for the right of HIV-infected pregnant women to access antiretroviral drugs - a proven therapy that drastically reduces the chances of babies being born with HIV. Plans are also going ahead to set up trial sites to start testing the first South African Aids vaccine and a central truth about Aids has been learned - with treatment, the disease no longer has to equal death.

Achmat believes the epidemic can be brought under control. "For the first time we can see the outlines of this epidemic and we can end it if clear measures are taken."

Two decades on , and hope has started to replace frustration and despair. As John Pegge puts it, this is the hope that Aids won't always be about "living with loss the best way we know how".

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