BBC News - Friday, 6 September, 2002
Tim Sebastian from HARDtalk

Tim Sebastian (Int):

It's only when you come here to the township of Soweto that South Africa's terrifying Aids statistics take on a human face. My guest today is an Aids activist and an newspaper columnist and he writes about what he knows. He himself is HIV positive. Who does he blame?

Int:

Lucky Mazibuko, a very warm welcome to the programme.

Lucky Mazibuko:

Thank you.

Int:

When you watch friends and relatives dying of Aids here, when you watch HIV infections take place, what passes through your mind?

Lucky Mazibuko:

Well, it's indescribable, the pain that I feel, particularly for young people, you know. Every time I speak to an adult and they don't seem to make sense of what I'm saying about the reality of HIV and Aids.

Int:

They don't take you seriously, what?

Lucky Mazibuko:

My heart really cries out for the children because if we as adults dismiss such fatal realities, then what future is there for our children? It's a very sad thing, it's very, very sad.

Int:

But the politicians seem to be still in denial. You have Peter Mucaba ( ? check spelling), an ANC MP who says, "HIV? It doesn't exist. The kinds of stories they tell that people are dying in droves, it's not true." How can politicians still be standing up and saying that here in South Africa?

Lucky Mazibuko:

Well, Professor Makgoba has said that Peter Mucaba (check) would not be able to distinguish between a virus and a bunch of flowers. So we can easily dismiss his views.

Int:

But not everybody will dismiss his views, will they?

Lucky Mazibuko:

Of course, but I have said in the past that I don't really mind whether it is HIV or DTV or ZZZ, or whatever you wish to call it, but something is killing people. And there is no way in which you can deny that. And also Peter Mucaba's timing was impeccably wrong because a few days after he had said that, the Presidency really emphasised the fact that they do believe that HIV causes Aids. And this is the premise on which they move on in strengthening HIV/Aids ---.

Int:

The Presidency?

Lucky Mazibuko:

Yes.

Int:

Thabo Mbeki?

Lucky Mazibuko:

Yes.

Int:

Because they've changed their mind. They've been very ambiguous about this.

Lucky Mazibuko:

Yes.

Int:

And it's caused a lot of damage here in South Africa, hasn't it?

Lucky Mazibuko:

Well, I suppose you could argue that, but I think that the debaters, well, you know, helped to a certain extent in terms of heightening a dialogue about issues related to HIV and Aids.

Int:

You say the debate helped you, having Nelson Mandela saying this is a war, we must not continue to be debating when people are dying. He's right, isn't he?

Lucky Mazibuko:

Of course, he is.

Int:

Too much time wasted on debating.

Lucky Mazibuko:

Of course, he is right. But if you look, for instance, at the silence that continues to blanket issues related to HIV and Aids, then you realise that, to a certain extent, it did highlight some of the issues in detail. You know, you had scientists battling out issues and newspapers reporting and people listening on TV and --- and so on. And therefore in that way insight could be gained. But I do believe that a lot of time is wasted, like the former President is saying, in terms of these debates. But I suppose from an academic point of view and just from the HIV Aids fraternity's point of view, it was important that that chapter is laid to rest.

Int:

And that you can move on, that there is no more debating?

Lucky Mazibuko:

And that we can move on with the provision of treatment, care and support for people living with HIV, yes.

Int:

But two months you have a letter from 22 of South Africa's leading scientists complaining about the government's lack of regard for scientific facts, worried about its refusal in defiance of two High Court orders to provide Nuviropene to prevent mother-child transmission. So the government is still digging its heels in, isn't it?

Lucky Mazibuko:

Undoubtedly. I am on record as saying that that is highly regrettable.

Int:

It's against the law, they're breaking their own law, aren't they?

Lucky Mazibuko:

Yes. It is nonsensical also in the sense that the whole HIV Aids debate has now took a complete twist. It has become an academic issue where only a privileged few discuss these issues, agonise over these issues, when the majority of people are inflicted and die on a daily basis of this largely sexually transmitted infection.

Int:

And the people you see around you here on a day to day basis, you yourself who have to live with this, these debates must seem meaningless, aren't they, to people here in Soweto?

Lucky Mazibuko:

Well, in more ways than one they are meaningless, I suppose. You know, if we had a situation where these debates were continuing but there was provision of treatment as well and provision of all the necessities around alleviating the plight of people living with HIV, it would somewhat serve as a consolation. But you find that the debates themselves really don't lead us anywhere near a solution.

Int:

You have a government who says we're duty bound to pose scientific questions and not be stampeded into precipitate action. The highest number of HIV infections in the world are here in South Africa and they still talk about precipitate action. What is needed to move this along, what is needed to move this government out of the hole that they're sitting in?

Lucky Mazibuko: Well, there are a number of credible debates, arguments that are put across. For instance, if you're looking at the issue of poverty, it is a genuine issue. And even at the United Nations special session at the UN headquarters in America, and most the ministers who were there did allude to the fact that poverty played an adverse role in terms of provision. Int:

It doesn't in terms of people.

Lucky Mazibuko:

No, it doesn't. But it aggravates the situation. If you, for instance, were to give people antiretroviral drugs on an empty stomach, it would not be sensible. So there are other underlying issues undoubtedly, particularly in a South African situation and perhaps in Africa as a whole. Therefore just to easily dismiss those arguments would also be suicidal as well. So the issue itself is very complex, but I think the point that everyone is trying to make is to say let's move on, we cannot continue with arguments and debates at an academic level without forward movement. And forward movement means provision of treatment for people living with HIV, not necessarily antiretroviral treatment, but we have African --- traditional healing practitioners who have forward with assistance, some who go ---

Int:

Doesn't that just complicate the issue even more?

Lucky Mazibuko:

What do you mean, complicate the issue?

Int:

People who will then be looking for traditional remedies. There is no cure either traditional or scientific, is there?

Lucky Mazibuko:

Of course there isn't at the moment to your and my knowledge. But that doesn't mean that we disregard African traditional healing methods. This is Africa, and besides that the majority of people, traditional healers are the first entry point in whatever illness. Even before HIV and Aids they used to deal with other ailments that used to come through within the African community without any western interference. Therefore what you need to do is that you need to bring them on board as well. I suppose for me the biggest disappointment is that while government is pushing the argument about toxicity and other issues related to antiretroviral treatment, they have not at the same time elevated the role of African traditional healing practitioners.

Int:

The government also is accused by the head of the medical research council, Dr Makgoba, of intimidating scientists and meddling in their work. That's a very serious accusation, isn't it? He says Isap Parhad (check spelling), the Minister of the Presidency, part of his portfolio, says Dr Makgoba, is to phone and threaten scientists. He's trying to play political games to overrule science with politics. He says it's very frightening. Do you share that view?

Lucky Mazibuko:

Well, I'm not sure how far the allegations have gone. I have not spoken to Professor Makgoba a personally. But I think this is exactly the point that I'm making, that if he is so passionate about that type of medicine, then what stops him from pushing other methods as well? If you find the argument I'm making about African traditional healing practitioners, if you look at [morica] for instance. [Morica] is an African plant which has been used over the years to boost the immune system. But once the western pharmacies got hold of it, what they did is that they patented it and no one else could use it. And where else you can get it from an African pharmacy for 5 Rand, if will cost you 80 Rand if you go to a chemist. So these are the types of things that I'm talking about, where there is a mutual disregard both on the side of the western type of medicine as well as the African one, and there's a mutual suspicion on both sides in terms of the western would disregard African healing tradition as primitive in terms of HIV Aids treatment as it cannot be trusted and so. The African traditional healing practitioners would, even if they had something valuable to contribute, they would hold onto it because they fear that their ideas might be stolen.

Int:

But whatever has been happening in South Africa, the situation has got worse than in other countries. You take Thailand. In 1990 the rate of infection in both South Africa and Thailand was less than 1%. In Thailand it's now 2.2 and in South Africa it's above 10%. So something went badly wrong here, whether it was the government interfering, whether it was reliance on other methods, whether it was the fact that there was this endless debate or the silence, something went badly wrong here in South Africa, didn't it?

Lucky Mazibuko:

Yes. I agree but you need to look that into perspective, and given the differences as well in Thailand and in South Africa, where.

Int:

The differences in culture or?

Lucky Mazibuko:

Well, culture, politics and everything else.

Int:

So Aids is politics, isn't it?

Lucky Mazibuko:

It's not part of that.

Int:

It's not just a disease, it's politics.

Lucky Mazibuko:

Yes, it affects every sphere of life. But if you consider, for instance, that during the previous regime in 13 years Aids was only mentioned twice in parliament, and when it was mentioned it was portrayed as a black disease. And therefore those who were in power then thought this was a black disease and it had nothing to do with them. And for 13 years it was mentioned only twice. My problem ---

Int:

And also black people ---

Lucky Mazibuko:

My problem now is that Aids is kind of like exclusive to the present government. Aids has a history and so if you want to blame somebody for the demise in which we find ourselves, then you have to follow that history correctly. You cannot isolate other factors and then want to blame one individual or one sort of like government, when actually Aids has a history. That's the first thing I want to say. The second one is that if you look, for instance, at awareness levels, you will find that it is up to 95%. So most people in this country are aware of what HIV is, but nobody is saying that, nobody is saying that South Africa had done well in that regard. Most people in terms of ---

Int:

It's not a question of saying whether South Africa has done well, is it? It's a question of bringing the infection rates down. It doesn't matter what the rest of the world says, does it?

Lucky Mazibuko:

Yes, but it don't happen overnight. You're talking about effecting behavioural change. Even myself, I've been living with HIV for ten years, but it didn't happen overnight that I became so enlightened about it. It took me three years.

Int:

Tell me about your personal slant. You found out by accident, didn't you? You took a blood test for an insurance policy.

Lucky Mazibuko:

Yes. I took a blood test for an insurance policy and then I was called to say that there was a problem. And I had to go to the office to be informed about what the problem was. And then I was afraid to go. But then that is how I found out. And I had not received any counselling and so on.

Int:

What passed through your mind at that time? Tremendous loneliness, I think, you wrote about, didn't you?

Lucky Mazibuko:

Yes. Well, a lot of things went through my mind. I began to isolate myself to live in what I termed self-imposed exile, and I developed an excessive sleeping disorder because I was afraid of falling asleep. I didn't know what HIV was, I didn't know how it would affect me, I didn't know ---

Int:

There was a culture of silence as well, wasn't there?

Lucky Mazibuko:

Of course, of course.

Int:

There was shame attached to it, wasn't there?

Lucky Mazibuko:

Yes.

Int:

In those days?

Lucky Mazibuko:

In those days there was because Aids then was portrayed as a death sentence, as something that only infected those who were evil or who were cursed. And the fact that it was portrayed as a death sentence meant that if you had it, then you had done something wrong. It doesn't matter whether you had been raped and you got infected, it didn't matter whether you were promiscuous and got infected, it didn't matter whether you got it through a blood transfusion, but everyone was blanketed as evil. And it took me three years really of personal interest in what HIV is.

Int:

You found out that the woman who infected you did it knowingly, didn't she?

Lucky Mazibuko:

Yes.

Int:

What did that discovery mean to you? Were you angry, were you shocked at what she'd done?

Lucky Mazibuko:

Well, I suppose that was the most difficult time in my life because I had just joined The Sowetan as a columnist where I was hoping to help other people, to share my story and to reach out to and sort of comfort others who were in a similar position as myself. And then when she called to tell me who she was and to remind me of what had happened between us, I was devastated. It was almost like receiving the results that I was HIV positive. And I suppose the dilemma I was faced with at the time was the huge responsibility I had taken by going to The Sowetan. And I couldn't give up, I couldn't turn back. So while there was this ---.

Int:

Did you want to shout at her, did you want to condemn her, did you want to throw rocks at the sky? Why me?

Lucky Mazibuko:

Well, I wanted to but I also wanted to forgive her. I wanted to reach out to her and say that I understand why you did that and just simply to forgive her because for three years, as I said, I had regretted the fact that I was HIV positive, I had blamed it on everything that moved, I had lived in self-imposed exile, I had sweated at night without any positive results, but I remained HIV positive. So whether I was bitter against her or cursed her or done all sorts of things, it would not have helped me anyway. But ---

Int:

You won't take the drugs, will you? You don't take any drugs. Why not?

Lucky Mazibuko:

Well, at the present moment I'm not taking any antiretroviral treatment in particular because it is not accessible to everyone else. And I have said that ---

Int:

So this is a gesture to everybody else to say I'm on an equal footing, I'm not going to have any advantages?

Lucky Mazibuko:

Yes. This is the sacrifice that I have made, but I think had made it hoping that it would speed up things, it would speed up the process of people ensuring that ---

Int:

The drugs are made available?

Lucky Mazibuko:

Yes. And unfortunately that has not happened and my health also is taking a bit of a battering. Last year I went to a doctor eight times and it has never happened before. Usually it's once a year or twice a year, but last year which I went there ten times, eight times. And steadily I can kind of like feel that perhaps - I don't know whether it's the anxiousness of having lived for ten years with HIV or whatever it is, but steadily my body is taking a beating.

Int:

You wrote once about the toughest time of your life being that you were expected to put on a big smile, to cope with your own feelings and your own fears, and wear this great smile, write about it in a cheerful way, if you could, in the Sowetan, go to schools, lecture to people.

Lucky Mazibuko:

Yes.

Int:

How much of an effort is it still to put on that big smile?

Lucky Mazibuko:

It is an every day effort. Even if I have my own personal problems and I have my own fears and I have my own difficulties and the pain that I feel, the loneliness that I feel sometimes and the desperation of seeing people die and feeling that my efforts are worthless, I still have to go out and say to people that it will be OK. The only thing we have is hope, I suppose, and we can't afford to lose it. That's the one thing we can't afford to lose.

Int:

You give hope to people - do you think you succeed in giving hope to people? And your own family, your children, for instance?

Lucky Mazibuko:

Well, I hope I do, I hope history will judge me.

Int:

So Lucky, the name, Lucky Mazibuko.

Lucky Mazibuko:

Yes.

Int:

Do you still feel lucky sometimes?

Lucky Mazibuko:

Well, I do greatly. And I don't whether it has to do with my name. The fact that I can live with HIV for ten years and the fact that I can go to people and speak to them and inspire them. But I feel lucky that when so many people are being discriminated against and they are suffering and others have been killed, that for me the nation has warmly accepted me and I get invitations to go and speak from churches, from businesses, from all walks of life, in squatter camps, in townships. I go everywhere. So in a way I feel fulfilled that people can look forward to hearing from one who is HIV infected.

Int:

And a sense of urgency as well that you get out and spread the message? Because when people talk about the future of South Africa, they have to beat the plague, don't they, to have a future?

Lucky Mazibuko:

Yes. That is partly true. But I think that our hope and our only hope is with children. And this is why I feel so passionate about them and I spend most of my time addressing young people, because I realise that they are the future and I hope that through my own contribution they might not fall into the same trap that I fell into and that they can grow up and be wiser than I was, be able to look properly after their sexual health, that they can be more intelligent, and that they can be capable leaders who will ensure that the future of this country is secured.

Int:

And breaking the silence? Have you done that now?

Lucky Mazibuko:

I think, as I say, it's very difficult for me to judge myself whether or not I'm succeeding, because most of the time dealing with HIV related issues is a very emotional thing for me and I try and do it very passionately. But I think somehow I am making a contribution. Whether it's in a huge way or it's making a big difference I'm not sure, but I can only do what I can.

Int:

Lucky Mazibuko, it's been a great pleasure having you on the programme. Good luck to you.

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