Home / Episode 8

Beat It! 1999 Episode 8

In this episode the Beat It! team looked at the state of HIV/AIDS advocacy in South Africa. In the Human Rights section we see how Nkosi Johnson and his foster mother Gail brought about the adoption of an HIV /AIDS Schools policy. Right at the end of the show the team included an additional insert in which Zackie Achmat explained why he was not taking antiretroviral therapy despite being able to affrod it and more importantly needing it.

Sipho Nhlapo: Hi, I’m Sipho Nhlapo.

Mercy Makhalemele: And I’m Mercy Makhalemele, welcome back to Beat It! –your guide to better living with HIV and AIDS.

Sipho Nhlapo: Hey Mercy, do you realise that this is our last show in this series?

Mercy Makhalemele: Did you know that there are more people employed as AIDS consultants earning thousands than there are people living openly with HIV and AIDS?

Sipho Nhlapo: In many ways, AIDS has become an industry all on its own, creating some jobs too.

Mercy Makhalemele: But seriously, many of us have felt for a long time that HIV and AIDS advocacy is not very effective and that something must be done about it. So this week we look at the state of HIV and AIDS advocacy.

Sipho Nhlapo: Is it all about money or is it about people’s lives?

Mercy Makhalemele: Let’s find out.

Special Report - HIV/AIDS Advocacy

Mkhululi Dick (Person Living with HIV/AIDS): My name is Mkhululi Dick, I’m HIV positive, I’m here to talk about HIV and to disclose my status to the community, towards South Africa.

Zanele (Person Living with HIV/AIDS): I would like to be open about it especially when I look at the youngsters in the area where I stay but it’s just a matter of time. Some members of my family don’t know yet, so it will be a shock for them.

Andile Elson (Person Living with HIV/AIDS): And then it hurt me to hear from other people that I’m HIV positive of which I did not tell them that I’m HIV positive. I’ve began to realise that there is no use to hide a public secret.

Narrator: Although about four million South Africans are HIV positive, only a tiny minority know that they are infected, even less are open about their status. This is partly because those who come out are rejected and discriminated against, as was the case with Maki of Soweto.

Maki Lufhugu (Person Living with HIV/AIDS): My life was fine in the beginning and then ngo-1994 i-life yam yatshintsha, so bengine-problem yama-gums then ngaya es’bhedlele, ngaya for i-treatment. Ngithe uma ngifika banginika bangi-exama bathola ukuthi ama-gums ami ahlangene and then after that bangisa e-Wits ke. Then after e-Wits ngabuya bathatha igazi. [in 1995, my life changed. So I had a problem with my tooth gums and I went to hospital for a check up. When I go there they told me that my gums were swollen. Then they sent me to Wits and when I returned to the hospital, they took my blood.] I phoned my mother before being discharged and then told her that the doctor said I’m sick. Then after that she said to me just shout at the phone. And she said, they say you have AIDS, why are you saying that? And she just dropped the phone. When I get in the house, my mother’s sister just looked at me and said why are you coming here? I said I came here because I live here and I want to rest. She said to me this is not the place for people who have HIV. Ngahlala ekhaya ngacabanga ukuthi ngizibulale. [After that I stayed at home and I wanted to commit suicide.] {isiZulu}

Narrator: All over South Africa HIV positive people experience discrimination when they disclose their status.

Thanduxolo Doro (Person Living with HIV/AIDS): I decided to speak out about my status, not only to speak out about my status but to speak out in order to protect the other people who were silent about their status and who were suffering because of that. So I felt if I could be open I would be paving a way for people to follow suit.

Desiree Booysen (TAC Co-ordinator, KZN): At the end of the day, does it help to tell people, to be on public display and stand by the city hall and say I’m HIV with the mayor next to you and the premieres and everybody in government. It doesn’t help. Are they going to give me food? Are they going to clothe me? Are they going to see to me when my husband kicks me out? Have they got a home for me to go to? They’ve got nothing, they’ve got homes to go to.

Narrator: Some clinics have now started income generating projects for positive people who do not get support from their families or friends.

Maki Lufhugu (Person living with HIV/AIDS): Ukwenza ama-ribbons ngiyaqala ukuwenza, so ngiqale uwenza ngo-October. [I have just started to make these ribbons in October.] I don’t know what they are going to give me because I’m doing this for the organisation. They are going to pay me but they didn’t tell me how much they are going to pay me. Into engenza ukuthi ngikhuthale nge-ribbon le, ngifuna ukunikeza abanye abantu i-support, abangeka-accept and into engizoyisho ebantwini ukuthi umuntu ayigqoke le-ribbon and uma uyigqokile le-ribbon it shows ukuthi you care ngabantu abane-HIV nabane-AIDS. [I make these ribbons in order to help support those people who have not yet accepted that they have the virus.] {isiZulu}

Narrator: The question remains, if these women were suffering from any other disease, for instance cancer, would they have been rejected in the first place? What can be done to stop the ignorance and discrimination that surrounds HIV/AIDS?

Mark Lurie (Senior Scientist at the Medical Research Council, Centre for Epidemiological Research in Southern Africa (CERSA/Hlabisa)): And leadership comes from the top on this one, I think in many ways. If you look at Uganda, people will tell you again and again. In Uganda the president spoke about AIDS ten, twelve, fourteen years ago. He was one of the first international leaders to respond to the HIV epidemic and consequently there was a discussion about HIV and AIDS in Uganda. And when you look at the national government’s response to the HIV/AIDS epidemic, one can actually get very depressed very quickly. I think one can summarize the response in several scandals that have hit the Department of Health.

Dr Helen Schneider (Director at Centre for Health Policy, Wits University): Things like Sarafina, Virodene, issues around notification; there’s been a whole lot of quite destructive and quite problematic events along the way, which have caused a lot of conflict in the field and limiting the possibility of maximising existing resources.

Narrator: Valuable time has already been lost, many say that valuable time is still being lost.

Dr Stephan du Mortier (Deputy Medical Superintendent at Maputo Central Hospital): You don’t find AIDS advertising. Do you think AIDS is existing in South Africa? As an outsider, I’m blind or I don’t see. Do I have something to see or not? I think information is missing.

Adeline Mangcu (Person Living with HIV/AIDS): It was the 14^th of May, Mothers’ Day. I was on national television: “Watch out for AIDS, why am I still saying that now?”

Monica Ishmael (Vice chairperson of SACTWU in Natal): I went to the Department of Health to go and get information on HIV and AIDS for the workers. When I got there, to my surprise, I found boxes full of dust, literature lying all over the floor and I was asking myself a question: “Why are these literature or pamphlets lying full of dust when there’s people out there that need this information?”

Mark Lurie (Senior Scientist at the Medical Research Council, CERSA/Hlabisa): Somehow there’s this idea that by simply wearing a ribbon will stop the AIDS epidemic and wearing a ribbon is a fine step to getting towards where we want to get but it’s not nearly enough.

Narrator: More than posters and red ribbons, it is when HIV positive people are open about their status that others will see how serious the HIV/AIDS epidemic is. At the moment, many positive people live in silence, however, better access to treatment for people living with HIV can change that. Treatment will give people a very good reason to come forward.

Dr Allison Russell (Physician working at the Chris Hani Baragwanath Hospital): I think people have to see that there are advantages to revealing their HIV status whereas now all they can see are the disadvantages.

Zackie Achmat (HIV/AIDS activist): Many of our people are dying because we don’t understand that we can live. We are dying of ignorance, we are dying because we are unorganised.

Mark Lurie (Senior Scientist at the Medical Research Council, CERSA/Hlabisa): We have an intervention that was tested in this country that we know can stop the spread of HIV from mothers to children, cut it by 50% and we’re not doing anything about it.

Adeline Mangcu (Person Living with HIV/AIDS): In 1994, I voted for a very progressive democracy, the best in the world. I was promised a better life and now I am told no to AZT.

Zackie Achmat (HIV/AIDS activist): What we are saying is no one needs to die. Repeat after me, no one needs to die. And the reason we don’t need to die is because there are treatments available.

Narrator: Treatment and openness go hand in hand. If people receive better treatment, more people will come forward. If more people are open then there’d be a louder voice calling for better treatment and the protection of rights of people living with HIV/AIDS. What can be done to speed up this process?

Mark Heywood (Head of AIDS Law Project): The other key thing for the AIDS lobby is just to fight for commitment; commitment not only from government, commitment from the private sector, from the trade unions, from the churches to recognise how serious HIV is, for every individual who lives with HIV but also for our society and also to recognise that we can control HIV. We will never control HIV without commitment.

Dr Helen Schneider (Director at Centre for Health Policy, Wits University): If government has been a weak player, the non-government, private sector business, NGOs, trade unions, the range of organisations out there have been slow to take on this problem.

Rachel Pelo (HIV/AIDS activist): It’s no use for us as young people fighting for democracy we all wanted, we got it and suddenly there’s this issue of HIV and we are all relaxed.

Dr Helen Schneider (Director at Centre for Health Policy, Wits University): Go to the local clinic, go and meet with the staff there and demand to have a discussion about what’s happening at local level? To go to hospitals and ask to meet the board of those hospitals and to have input about what the public and the community feels about facilities.

Zackie Achmat (HIV/AIDS activist): We don’t want the government to be our big brother. We are saying we want the government to take our hand and work with us. We are saying that the government can help us but we are going to help ourselves.

Narrator: People are already mobilizing. Earlier this year the Treatment Action Campaign launched a petition to demand that pregnant mothers be treated to prevent their babies becoming infected.

Morna Cornell (Director of the AIDS Consortium and TAC member): I’m here as one of the members of the Treatment Action Campaign committee and we’re here today to meet with Dr Zuma. The Treatment Action Campaign, I think is strong, that’s why we are eventually going to come in and meet the minister. Because the study at the end of last year, it was an attempt to start to mobilise ordinary people around the issues of AIDS and to get them to support a really strong campaign to look for treatment for people with HIV and AIDS within the context of a better health system for everybody.

Narrator: But how do we mobilise more people to demand treatment and an end to discrimination?

Mark Heywood (Head of AIDS Law Project): People always think that you must fight AIDS on a grand scale but you can fight AIDS with the person next door to you, you can fight AIDS by having a discussion about sex with the person next door to you and you can fight AIDS in the workplace.

Maki Lufhugu (Person Living with HIV/AIDS): My mother works as a domestic worker. One day she told me that her boss was talking about AIDS and HIV and he was talking positively about people who have HIV and AIDS. He said: You know if I have a daughter who has HIV, I’m not going to throw her out, I’m going to look after her and give her support.” And I asked her how she felt and she said: “I want to do the same thing to you.” She was holding a cake, she said to me ok let’s share this cake together. I said: “You accept me now?” She said: “Yes, you are my daughter.”

Narrator: Ordinary people can make a difference, you can spread the word. There is no need to discriminate. HIV/AIDS can only be spread by having unprotected sex or coming into direct contact with blood. And remember, treatment is available. It is all our responsibility to fight to bring treatment to the people.

Mercy Makhalemele: It seems like doctors and politicians are sometimes the only people that have a real say in matters affecting us.

Sipho Nhlapo: We need to unite and have a voice in all decisions affecting us. Let it not be all about us, without us.

Mercy Makhalemele: Next up, Faghmeda chats to Dr Steve about some of the more serious health problems which can arise and we should respond when this happens.

Sipho Nhlapo: In case you’re wondering, we are out here at school trying to investigate the situation of kids who are at school living with HIV. Our human rights feature this week looks at the new government non-discrimination policy on kids who live with HIV and AIDS.

Treatment Literacy

Faghmeda Miller: Doctor from our chat last week, we have discovered that HIV causes many ailments but this does not really mean that you have AIDS. What types of illnesses are really associated with AIDS?

Dr Steve Andrews: Faghmeda, as we’ve discussed before, once one’s body’s defence system begin to fail and the CD4 count; which is the way we measure those defence systems, falls below 200 cells, a person with HIV is prone to getting all sorts of diseases and these can affect one or many of the body systems. Examples of these diseases are things like PCP pneumonia, brain infections called Meningitis, skin tumours and forms of Tuberculosis.

Faghmeda Miller: So how can your quality of life be sustained at this stage?

Dr Steve Andrews: It is important to follow the advice for healthy living that we have been giving in this series. It is also important to take the medication prescribed to prevent some of these illnesses that can occur in late stage illness. And it is also very important to treat those illnesses that are beginning to occur. As a person living with HIV, this is your illness and when these diseases that occur in late stage HIV occur, you need to fight hard to be properly diagnosed and properly treated. This can make a significant difference to what the prognosis of the illness is.

Faghmeda Miller: So if the virus is the problem, why can’t we treat it directly?

Dr Steve Andrews: It is very possible to treat the virus directly and we have drugs called antiretroviral agents to do this. There are a wide variety of antiretrovirals available. Different antiretroviral agents are suitable for different stages of illness and can cost anything between R500 and R5000 per person, per month. This very high cost is the main reason that most people who are HIV infected do not use these agents.

Human Rights - HIV/AIDS School Policy

Gail Johnson (Nkosi’s mother): Nkosi came into my life approximately eight and a half years ago. We started a care centre for HIV positive people called The Guest House. We weren’t very well supported financially, that facility closed, so I brought Nkosi home. I had experienced with crèches that it was a no-go area and of course when Nkosi was eight, I said: “Damn this, he’s got to go to school.” Firstly, I would have been fined and secondly, he had the right.

Badie Badenhorst (Principal at Melpark Primary School, Melville): Gale came in, gave us the application and she wrote on the application form that he was HIV positive.

Gale Johnson (Nkosi’s mother): I was open about his infection because everyone knows Nkosi. So to deny that he was infected would’ve been stupid as far as I’m concerned and I need the support of the school. If there’s a chicken pox outbreak or if there’s mumps, I need to know that because the uninfected children are more dangerous to my son than he is to them.

Badie Badenhorst (Principal at Melpark Primary School, Melville): At that stage there were no, but no guidelines for people with HIV positive children.

Gail Johnson (Nkosi’s mother): Whilst the school didn’t say: “No ways”, there was a tremendous delay in admission simply because they didn’t know how to deal with it and that was my bug, there, because there should have been a policy

Badie Badenhorst (Principal at Melpark Primary School, Melville): Nobody from the department was at that stage, prepared to put anything in writing. So we were in an awkward situation. We then went to the Grade one parents.

Gail Johnson (Nkosi’s mother): Parents threatened to take their children out of the school. One parent was going to wrap her child up in plastic. And I mean I want you to hear but I don’t know what you to say about that, but a little walking condom would have been fantastic. But people are scared, there’s no doubt about that and I’m a parent of an infected and uninfected child and I know both sides of the story and I know where those parents are coming from. And then when it became public knowledge, we had a meeting with the Education Department and we had a meeting with the Health Department. And the Health Department immediately did intervention on workshops at the school. I didn’t participate in those, I wasn’t asked to but as I understand it, I think they did two or three for parents and educators. And then there wasn’t an issue.

Badie Badenhorst (Principal at Melpark Primary School, Melville): Ons het in klas verband met mekaar begin gesels; ons het nie hier in die sal bymekaar gekom en begin praat oor VIGS en HIV positieve kinders en dit is wat nou in ons skool gaan gebeur nie. Ons het hulle geleidelik: dit is VIGS dit is hoe die saak eintlik werk, dit is hoe dit versprei. {Afrikaans} [We started discussions in each class. We did not call all the children to assembly where they were suddenly confronted with the issue of HIV and the fact that we now had to deal with it at our school. We gradually told them what HIV is and how it is transmitted.]

Glynis Pitchers (Nkosi’s teacher): Most of the children have been with him since Grade one. So they have sort of come through this system knowing he’s got AIDS. They are protective over him from the fact that they see he’s going to fall or something, they protect him. They do know that they are not allowed to touch him if he does fall and he starts to bleed.

Nkosi Johnson (Learner with HIV): It’s not a good virus, it kills you but you must stay safe and not touch other people’s blood and don’t sleep with other people without using a condom.

Badie Badenhorst (Principal at Melpark Primary School, Melville): Ons het toe vir ons leerlingraad mediese handskoene gekoop en baie mense het ons daarvoor verkwaalik. {Afrikaans} [We bought medical gloves for the students’ council. Many people blamed us for that.]

Nkosi Johnson (Learner with HIV): Oh well, I’ve got a lot of friends. My best friend’s name is Aubrey, my other friend’s name is Dylan, my other friend’s name is Kgotso and Thulani and a whole lot of other friends.

Gale Johnson (Nkosi’s mother): We’ve got to somehow create this environment of acceptance, to know that there is not an issue about HIV/AIDS in sharing a desk, sharing a ruler or whatever the case may be. But Nkosi has to take responsibility and I would expect him to take the necessary precautions. So it’s a give and take both sides.

Badie Badenhorst (Principal at Melpark Primary School, Melville): Hier is honderde kinders in ons skool wat nie eers bewus is dat Nkosi ’n siek kind is nie. Want hy neem normal deel. {Afrikaans} [Many kids don’t know that Nkosi is sick because he participates normally.

Gail Johnson (Nkosi’s mother): As a result of Nkosi, thank God, there is now a policy. And he pioneered that policy and I’m very proud of him there.

Nkosi Johnson (Learner with HIV): Ja, they should be cared about and loved, but not left behind, they must also be part of their family. We are all a family.

Positive Person and Red Noose Awards

Marc Lottering: Hi there, I hope that this will not be the last time I get to play hangman and give out the noose to someone who needs neck surgery or the heart to those who are honestly taking up the challenge of ending this epidemic. As you can see, I have some fashion accessories today. So do you think that all these ribbons do anything towards stopping the epidemic? And by the way, I also hope that most of you out there have been active participants in the World AIDS Day programme in your neck of the woods. But this week I want to make a suggestion to all those who hide behind their Red Noose, sorry red ribbons and who don’t join in the campaigns to promote safer sex and discrimination and promote openness and fight for better treatment. My suggestion is please take your ribbons, turn them upside down and voila, you have your very own noose. Ok, ok moenie so kwaad lyk nie [don’t look so angry]. You can redeem yourselves: why don’t you take your ribbon and pin it to your HIV positive t-shirt and go to work in your t-shirt. I’d really like to see all our popular South African characters and all the TV news people appear on the news with this t-shirt just to show that after all we really do live in a really positive world. Now this week, as it is the last week of the current series, sniff sniff, the positive person award must go to Nkosi Johnson and his mother Gail for their spirit and determination to beat HIV/AIDS. Not only are they shining examples but they also pioneered the new education policy guaranteeing non-discrimination for HIV positive kids at school. And finally, our producers have very kindly ask me to give a special warm heart and word of thanks to our presenters, Mercy and Sipho for undertaking to present these programmes. So until I see you again and I do hope that it will be very soon, this is Marc saying take care of yourself, take heart and watch out for the noose. {Afrikaans}

Special Message - Zackie Achmat

Zackie Achmat: In two weeks time we will be entering a new millennium but we still have unfinished business. That unfinished business is the fact that the majority of people with HIV don’t have any access to proper treatment and care. As a member of the African National Congress, I ask the government please provide AZT or Nevirapine to pregnant mothers. It is morally, economically, scientifically unjustifiable not to provide AZT or Nevirapine for pregnant mothers. I’ve worked with wonderful people and wonderful comrades and for the first time in the Treatment Action Campaign, we have made hundreds of thousands of people across our country aware that AIDS can be treated and that for me is a great step forward. But I also know that the virus is in my blood, it fights with me everyday, sometimes I feel tired and sometimes I feel depressed. Many times I feel hopeless. But I know that my friends are there and some members of my family support me and that makes me much happier. People who support me are very sad, they are sad because they know that I won’t take treatment. And the reason I won’t take treatment is because the vast majority of people with HIV/AIDS in our country earn less than R600 a month. I feel that it’s ethically wrong to take that treatment for me. Why? Because if any of my brothers or sisters have HIV, they will not be able to afford the medication. More importantly, I still believe that health cannot be dictated by profit, health is a human right. It is a central fact of all our lives that at the moment we cannot afford to be healthy. I believe that I will live and that I will get access to treatment and that medicine will become available in the public sector. Why? Because I have faith that the majority of people in our country will stand together, together with our sisters and brothers in Zimbabwe, Namibia, Uganda and elsewhere to fight for HIV and AIDS treatment.

Sipho Nhlapo: Well, this is really goodbye for now from the Beat It! team. We hope that you have gained something positive and helpful from this series.

Mercy Makhalemele: And if you would like to see Beat It! continue please contact us on the numbers on the screen below.

Sipho Nhlapo: We encourage you to contact us and request copies of the programme for showing at school, at your workplace, at church and at clinics, especially all of the HIV counsellors around the country. We urge you to use the programme and tell us about your experience with this type of video.

Mercy Makhalemele: So guys from me, Mercy Makhalemele…

Sipho Nhlapo: ...and from me, Sipho Nhlapo, it’s goodbye, please be positive and please remember that together we will Beat It!

< previous episode