Twenty years ago, the Nationalist government refused to give R20 000 to activists who wanted to run AIDS education programmes in the gay community.

“Their attitude was that homosexuality was illegal,” said Dr Dennis Sifris, one of the country’s pioneering AIDS doctors.

“But,” he rages on, “that was the bad old apartheid government and we expected it from them. Now, with freedom and democracy, we did not expect a government that questions the existence of HIV and tells us that antiretroviral drugs are poisonous.”

Sifris was one of the first doctors that immunologist Dr Reuben Sher contacted early in 1983 after an eye-opening trip to the US in late 1982 where he had met some of the pioneering AIDS virologists.

At that stage, two South African were known to have died of AIDS. Both were young, white male cabin attendants for South African Airways who travelled frequently to the US and Europe.

“I was looking for something to specialise in and here was this new disease that involved a virus and immunity, both of my interests,” says Sher, who was working for the SA Institute for Medical Research (SAIMR).

When he returned to South Africa, Sher contacted Sifris, who had a big gay practice.

“I called my patients and spoke to them about AIDS,” says Sifris. “Everyone knew there was ‘something’ but no one knew what it was. About 200 patients agreed to come in and be tested.”

Throughout 1983, Sifris and Sher took the men’s histories and blood samples. “Because there was no antibody test, we kept the blood samples locked up in a freezer. When the HIV test became available in 1985, we went back and tested the samples and found that 11 to 12% were already HIV positive,” says Sher.

The two doctors approached the Johannesburg General Hospital in 1986, and were given permission to start an AIDS clinic that initially operated once a week. They saw the majority of the early AIDS cases in the city.

“In the earlier cases, I saw many SAA cabin attendants who had been infected overseas. We saw some haemophiliacs who were infected by blood transfusions, but the sexually transmitted cases all involved white homosexuals until 1987 when the first two black South Africans were diagnosed,” says Sher.

“We were faced with young men whose parents didn’t even know they were gay. Now they were being called to see their sons dying of AIDS in hospitals. I learnt a lot from them about not being judgmental.

“It was very difficult dealing with young people who were dying and we could offer them nothing more than empathy.”

Around 1987, the drug AZT – initially a cancer treatment – was found to be effective in treating people with HIV. But, says Sher, the government was “not interested, as they felt their money could be better spent on other things”.

Sifris remembers how the Johannesburg Hospital’s administration decided to give AZT to “blameless haemophiliacs but not to people acquired HIV sexually, the implication being that it was their fault that they were infected”.

Between 1986 and 1987, Sher was involved in a major study with the Chamber of Mines in which about 30 000 mineworkers were tested for HIV.

“Malawian miners were the only group where there was significant HIV infection. About 3.76% were HIV positive,” said Sher. “The Chamber of Mines wanted to pre-test Malawian mineworkers before recruiting them but the Malawian government refused. So in 1988 the chamber stopped recruiting from Malawi,” says Sher.

The SAIMR became the Nationalist government’s think-tank on HIV/AIDS, with Sher and SAIMR director Jack Metz forming an AIDS Advisory Group together with health officials.

“There was a lot of prejudice. First AIDS was seen as a gay disease, then a black disease. One got the feeling that the [apartheid] government didn’t really go out of their way. But the officials we dealt with were interested in the condition,” says Sher.

“I was the keeper of the statistics nationally,” he adds. “I would contact doctors and laboratories all over the country, asking them whether they had seen any cases.”

He says there were “a lot of ethical problems” in the early days, involving doctors breaking patient confidentiality, mainly because doctors were scared of being infected.

“As one of the few people dealing with AIDS, I ran around all over the place giving talks about how it was transmitted.”

But after 1994, Sher believes that the “white doctors involved in AIDS” were deliberately shunned by the new black government.

“I can understand government 20 years ago being reluctant about AZT because one could say then that it was an experimental drug,” says Sifris. “But the shame and the disgrace of this AIDS Day is the shilly-shallying the present government has shown towards anti-retroviral drugs. Why isn’t anyone in government telling people that the drugs work? Why isn’t the ARV rollout working? No one should die of AIDS today.”

Aids stalwart Dr Clive Evian was a young doctor in rural Gazankulu when he first read about the ‘€œgay disease’€.

‘€œI was working for a rural primary health care programme near Acornhoek in the early eighties and read a few articles on Aids, but at the time it seemed to be a gay disease that was found in Europe and America, so I didn’€™t pay too much attention. We were too busy battling with primary health care issues,’€ he recalls.

It was several years later in 1989 that he encountered the human face of the disease. He was approached by the Johannesburg health department to manage the city’€™s response to the disease in his final year as a registrar.

‘€œI went around trying to find people who could assist and give me more information. Reuben Sher was almost the only person who knew anything about it at the time. It was quite scary,’€ says Evian, who assisted in establishing the HIV Clinic at Johannesburg Hospital shortly after his appointment.

Thousands have since passed through the clinic’€™s doors.

‘€œIt was basically a gay men’€™s clinic at the time. That room was a safe place for so many people. A place where they could talk about their fears and the huge stigma they faced. I have had so many deep and enriching relationships with patients there that I still work there on certain days, seeing my patients, some who have been with me for 12, 13 years,’€ says Evian.

Evian also recalls a conversation with Dr Anthony Zwi in the eighties.

‘€œHis father was a professor at Wits and like me Dr Zwi was a young doctor. Dr Zwi was at the London School of Tropical Medicine and he gave a talk warning us to ‘€˜wake up to this HIV thing, it is coming’€™.’€

The conversation prompted Evian to read more and he became aware of the epidemics in Uganda and Zimbabwe.

 ‘€œI realised it was moving south and that pretty soon we would be in trouble. We were on a timebomb, but amid the political turmoil it was impossible to get anyone to listen or to get it onto any political agenda.’€

Evian struggles to recall his first patient, but does remember a young man called Pedro.

‘€œHe was one of the first people I met who openly said he had HIV.’€

Evian describes the stigma during the eighties: ‘€œWe had an HIV advice centre in a building in Claim Street in Hillbrow. The other tenants were mostly doctors and they refused to allow us to put the word HIV on our advertising board outside the building. They said it would be bad for their businesses as their patients would be fearful of using the same lift as our patients or having to touch the same doorknobs. In fact someone blotted out the word HIV on our board that we had put on our door.’€

Evian now highlights two issues that are hampering efforts to stem the tide ‘€“ An absence of political commitment from the President’€™s office and a country he charges with being completely oblivious in terms of the ethos around sexuality.

 ‘€œWe need Thabo Mbeki to show the same urgency and commitment he shows towards handling conflict in the Ivory Coast,’€ says Evian.

Dr Des Martin saw his first patient in 1987, although he does not remember the specific patient.

‘€œAnonymous testing among the heterosexual population showed zero or very low prevalence,’€ he said.

Martin, who has been instrumental in establishing the South African HIV Clinicians Society, recalls the ‘€œearly days’€ when doctors had to prepare people for dying.

‘€œWe became grief counsellors and had to give people a lot of bad news. We had to learn lessons from those dealing with terminal cancer patients,’€ says Martin.

Martin left his general practice in the Lowveld (Mpumalanga) to study Tropical Medicine at the University of the Witwatersrand in 1986, three years after the virus was isolated for the first time.

It was here that he started hearing about the virus, which was primarily confined to gay men and drug users in the United States.

‘€œWe spoke among one another about this interesting disease and I remember doctors commenting   – ‘€˜Oh, in a couple of years they would have found a vaccine’€™,’€ he remarks wryly.

‘€œIn the early nineties a complete reversal started taking place and we saw more and more heterosexual people.

‘€œNow the disease has become a chronic, but manageable disease. This keeps me going and the excitement that around the corner a vaccine will come. Not in my lifetime, but it has to come.’€