I'm no hero - first Aids vaccine volunteer
14 November 2004
by Liz Clarke

Durban, South Africa: KwaZulu-Natal's first HIV and Aids vaccine trial volunteer Mduduzi Sabath Nkosi, 28, doesn't regard himself as a hero but as someone who was "lucky enough" to be around when the country needed him.

A year ago this week he received the historic first Aids vaccine at the Medical Research Council's Durban clinic, becoming one of the first human volunteers in the HIV and Aids vaccine safety trial targeting the HIV 1, Clade C substrate, the one most frequently found in sub-Saharan Africa.

"I don't think of myself as a hero or anything like that" he said at a routine follow-up visit to the clinic this month. "But if there is something I can do for my fellow human beings that will make their lives better, then I am happy to do it."

The contribution he gave to his country and to the world by becoming a willing partner in this vaccine discovery process began in December 2002 when he was listening to the radio and heard staff from the Medical Research Council inviting people to come to their Durban offices to hear about Aids vaccine research.

"I spent the day there with people who had also heard the programme and they explained everything about the virus and the importance of a vaccine that could one day help millions of people."

Born in Piet Retief in rural Mpumalanga near the Swaziland borders, Mduduzi came to KwaZulu-Natal to study for an electrical engineering diploma in Durban. Describing himself as "naturally curious", Nkosi said his interest in science had made him want to know more about HIV, how it affected people and why it couldn't be cured.

"After learning the true facts, I realised I must do whatever I can to help prevent this terrible disease that is killing my people," he said. "I knew it was a big step but I wanted to be a participant in the phase 1 trials".

Before that point Mduduzi admits that he had limited knowledge about HIV and Aids. "I had read about HIV and Aids in magazines and knew how dangerous it was to have unprotected sex, but at that stage I did not know the science and what it did inside the body."

Mduduzi says none of his family is infected and he personally does not know of anyone who has the disease.

"But maybe this is because people don't like to talk about it and wouldn't admit they have it because they would be too ashamed and scared. I know people who are ill and have certain symptoms but they haven't been tested for HIV so it is difficult to say."

He said he had tried to tell his friends about the vaccine trials, even trying to persuade them to take part, but the response was not good. "People are very frightened of this thing. They don't like to talk about or call it by its real name. Because of the many meetings I have been to at the MRC I have a lot of information. I urge people I know to take advice from nurses and doctors about prevention. I ask them if they are aware of the devastating things that can happen and that there is no cure. It is very disappointing that they don't listen."

Even when people started to "lose weight and cough a lot, or have diarrhoea or sores in their mouths", they would rather not say anything. "They are ashamed and know that people will look down on them if they are HIV-positive. Their families could also turn their backs on them."

Part of the requirements of becoming a participant in the safety trials was to have an HIV test as only those who are negative could be enrolled. Mduduzi said that he was not frightened by the prospect of a test. "I knew I had always been very careful and had not taken any risks. I always use condoms and will only be with someone I intend to marry. I am not interested in becoming a playboy and having lots of partners just for sex. When there is no commitment, the problems begin."

Mduduzi, who calls himself a "proud Zulu", explained that in the Zulu tradition the rules about girlfriends and marriage are very strict. "If you meet a girl and it is serious, you take her home where lobola is discussed. Sleeping around with one girl after the other if you don't intend marrying, is not acceptable. If young people followed that rule, fewer people would be getting sick."

Describing the passage of events from the initial meeting to when he was injected with the vaccine, Mduduzi said that for 11 months he attended workshops where the process was explained in fine detail and how only people eligible to take part were HIV-negative but had no other diseases and were aged between 18 and 60.

The training also included information on the immune system and the role of the CD4 cells in the fight against disease, as well as the antibodies, which form part of the preventive process, and how a successful vaccine would work.

"We learnt we would have to have an Aids test and other blood tests. They told us that there were some risks of side effects, but these would be watched carefully. If we became infected during the trial we would be offered treatment."

However, it wasn't, as he puts it, "a matter of saying yes" as there were ethical formalities that needed to be followed and completed. "We had to go back to our families and people close to us and tell them what we wanted to do and how we would be injected with a viral substance that, while it was safe, might have side effects. It was important to be open and honest...

"At first they didn't understand what I was going to do or what would happen to me," said Mduduzi. "I didn't discuss it much with my father because I knew it wouldn't really mean much to him. He is illiterate, so he has not read anything about it. My mother, who is 64 and four years younger than my father, is also illiterate but she is much more knowledgeable and takes an interest. She knows about HIV from people explaining it to her. She said I was doing the right thing and I must continue."

The safety trial was to start on November 10, 2003 and Mduduzi was the first participant "When I got up that morning I was a bit nervous because I knew that this was a very important day for my country and my community and really for the whole world. I wanted to tell everybody what was in my heart but there wasn't anybody who would really understand.

On my way to the MRC I wondered about the injection. Would it hurt? Would I feel any different afterwards? But I trusted all the staff and they had prepared us very well."

After it was over he said he felt "very, very joyful".

There was no going back now. "I must say, it was quite a strange feeling knowing that this tiny cell with the vaccine inside it was making its way through my body. I tried to imagine where it was and what it was doing. It's a bit like speaking to somebody. I also hoped my body was going to do the right thing."

In the year since the first injection, Mduduzi says that he has had no adverse reactions and has never felt better. He would like to participate in the research to the final phase.

"One day, when I have children and grandchildren, I will tell them about this day. I think it will be something that will always be important in my family, maybe not now but in 10 years. I also think I have learnt a lot from this experience about my own health and my body and also about research and vaccines."

Mduduzi says it is also his duty to try and persuade other people to volunteer. "But it is the test they are scared of. I say to my friends that if they are HIV-positive, it would be much better to know early on what their status is and then more can be done to help them. But they shake their heads and then they don't want to talk about it any more. But I will go on trying."

Mduduzi said he had learnt one very important lesson from this experience. "It is that we must be in a partnership like brothers. The government must make sure that anti-retroviral treatment is available at all the hospitals and clinics in our country. But we must try and prevent it happening in the first place.

Often I hear people crying and saying there is not enough money for Aids medicine, but those same people, when they get sick, don't want to be tested or take any advice. The only way to find solutions is to participate in the future, like brothers. We can't all be heroes but we can make a difference."

He also believes it is important that participants have faith that the vaccine will work. "If you don't believe it has a good chance, people will not worry to join teams like this." His dream for the future is to have a baby that grows up in a country free of HIV and Aids. "But perhaps that dream will be for my grandchildren."

The substance used in the South African 040 immunigenicity Phase 1 clinical safety trials of a candidate Aids vaccine, uses a copy of the virus gene where the reproductive, or retroviral elements have been eliminated. The process, developed at Cape Town University by a group of South African scientists, involves an attenuated Venezuelan Equine Encephalitis virus used to deliver the vaccine to the target areas of the body over a period of time with regular follow-up testing.

The two vaccine trial sites, run under the auspices of the South African Aids Vaccine Initiative in conjunction with the Medical Research Council, are in Gauteng and KwaZulu-Natal. A parallel site, using the same vaccine process, is being conducted in the United States.

From: Cape Argus, South Africa



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