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Beat It! 2002 Episode 6

In this episode the links between fear, ignorance and stigma and discrimination and the impact that treatment can have on these problems was explored. In the special report we met the brave and soft spoken Babalwa, who was raped by a family member who believed that by sleeping with a virgin he will be cured. Dr Nombulelo looked at the role Cotrimoxizole plays in positive people’s lives.

Vuyani Jacobs: Wam’kelekile kuBeat It! Ndingu {IsiXhosa} [Welcome to Beat It! I am] Vuyani Jacobs.

Nombeko Mpongo: Ndingu {IsiXhosa} [I am] Nombeko Mpongo. Beat It! is the programme for all people living with HIV and AIDS, or partners, families, colleagues and friends.

Vuyani Jacobs: Coming up this week…

Nombeko Mpongo: Dr Nombulelo Madala talking about the importance of using Bactrim to prevent many common illnesses

Vuyani Jacobs: And we bring you the final part of our Special Report on rape survivors and post exposure prophylaxis, PEP for short.

Nombeko Mpongo: But first the Support Group discusses the issue of stigma, the blame game, which is the root of so much discrimination. Let’s hear what the group has to say about the link between openness, treatment and breaking down the stigma.

Corne Fourie - Stigma and Discrimination
Mitchells Plain, Cape Town

Corné Fourie: My name is Corné Fourie; I was born in Wellington in the Western Cape and at present I am staying in Mitchells Plain, in Tafelsig, with Mrs Hartnik here, which I accepted as my second mother and she accepted me as one of her sons, one of the children at home and so does everybody here as a matter of fact.

Corné’s ‘brother’ 1: Hy’s an alright old whitey wat hier bly, man, hier tussen ons. En hy’t hom maar nou so lekker aangepas hier by ons, nou. {Afrikaans} [He’s a cool whitey, living here among us. He’s adapted nicely to us.]

Corné’s ‘brother’ 2: Ons wat hom amper soos ‘n broer van ons. {Afrikaans} [We take him as a brother.]

Corné Fourie: Ek was in die gevangenis gewees en ek het in die gevangenis HIV positief geword; dit is waar ek getoets gewees het. {Afrikaans} [I was in prison where I contracted HIV and where I was tested.] When I came out of prison I thought by myself: “Where to now?” and then a friend of mine, we used to share a cell in prison, and I’ve met his parents, and he said to me: “Why don’t you go to my mom?” I said to him: “Excuse me? Do you really expect me to go to a coloured community? How will they except me?” So we phoned his mother and explained to her what is going on, not stating my status, my HIV status, and not even talk about being gay because I think if I said that they would have never accepted me. So, it took me awhile when I got there, it took me about six months just to get used to the people.

Corné’s ‘brothers’ 3: ’n Siekte is mos nie wat, deur hoose, kan hy mos nie vir ons daai siekte gee nie. ’it moes mos duur seksuelle of bloed kontak of iets soos daai, dis dit. Hy is nog ‘once’ die selde, soos ons met hom is so is hy met ons. Ons is duidelik. Hy en ons is saam. {Afrikaans} [He can’t pass on the disease through a cough. It can only happen through sexual or blood contact. He’s fine and we’re fine with him.]

Corné’s ‘brother’ 4: Ons is baie life vir hom en hy’t ’n baie goeie maneer. {Afrikaans} [We love him and he’s got a good way about him.]

Anthony Fernandes: The first thing I thought about is: “What about condoms?” “Why isn’t there condoms in prison?” But if say there’s condoms in prison, we say that men is having sex and we can’t have that.

Corné Fourie: The thing is the people are to scared to go to the hospital section or to the head of the sections to go get the condoms because then everybody will then know they are sexually active.

Anthony Fernandes: What are we doing as a society, as a government to those people, having sex unprotected in prison, coming out maybe going back to their wives and their children? How are we stopping the virus there as well.

Vuyani Jacobs: Ja, Anthony, I just want to ask this. You know, this is very close to what I think. You bring your homosexuality, especially closely with HIV, like, a lot of men having sex amongst themselves then that actually comes out in what you’re saying. Because it comes back to what I’ve once been asked when I was given my own result with HIV, the doctor asking me before he gave me the result: “Vuyani, did you ever have sex with another man?” That was the most horrible question I ever heard. I mean I never wanted to be associated with that kind, I mean with the kind of having sex with another man, I mean being very much heterosexual.

Anthony Fernandes: You know, Vuyani, if a doctor had to ask me if I have ever had sex with a women, you know, I would probably be offended as well, being a homosexual man. So, again there is stigma immediately there: white homosexual men were the first to be known to be the AIDS carriers and people who infected everybody with AIDS. And I think right through the eighties especially it was, you know, it was known as that because it came up first through the homosexual community that, you know, first gay men started having this disease and there was a threat and it started coming out that people attached this whole thing about AIDS and gay white men. And I think that’s, it’s probably got to do with the doctor’s own homophobia where it came up; you know his fears and going all the way back to that first stigma. You know, AIDS – homosexual white men.

Nontsikelelo Zwedala: Okokhuqala nda stigmathayizwa ngugqirha qala cause wathi xaye andi diagnose phofu akazange anditsale igazi wathi mandihambe ndiyothatha isethifikethi, ideath sethifikethi e Jooste ukuba sindizofa indiqibile iAIDS. And then xandibuya eJooste nasedlini ukudiscriminetwa ndithengelwa i utensils zam zondwa, into zotyela zaziyelo imagi,nesitya zeplasithiki amacephe abaliwe NZ no NG. U NG yayengumama waphayana. Onke amacephe waye markishiwe uNZ ngezantsi ukuze abatwana babone ukuba behlule elami icephe, izinto zami bezihlala zondwa iceleni. Ndandi sukha eNyanga ebrachini ndingonduka, Ndadibana nom munye umtwana wesikolo wathi ufuna iabulance yasemortuary okanye yasesibhedlela. Lento ayibona phambi kwakhe ngumfanekhiso wase mortuart or esibhedlela. Inoba ndibelonga emortuary or esibhedlela ngoku ndizimele uzozama izicontacts zondibana nesibhedlela or mortuary. {IsiXhosa} [Okay, I was first stigmatised by the doctor, because when he diagnosed me, he said I must get a death certificate from GF Jooste, because: “I was finished with AIDS.” When I returned from Jooste the same happened at home; I was discriminated against. They bought separate utensils for me. My mug and dish were of plastic and yellow and the spoons were marked “NZ.” The initials of the mother of the house are “NG.” All the other spoons were marked “NG” but mine were marked “NZ” so the children could differentiate and the things were put separately. When I returned home from the Nyanga branch I met a school child who said he saw an image of a mortuary or hospital therefore he must get transport to either of the two. He said maybe I belong to a hospital or mortuary I had run away, so he would try to contact them.]

Nomandla Yako: Ntsiki ucinga ababantu ba, laba ohlala nabo ePhillipe ucinga inoba basacinga ngolohlobona ngabantu abaHIV positive okanye yayi lack of knowledge ukuba bangayifumana njani. Mhlambe bebasoyikha ukufumana iHIV from wena ukuba bangazi iHIV isuleleka njani. Hlabe noba likhona uthsitsho oluyenzekile. {IsiXhosa} [Ntsiki, do you think the people you lived with in Phillipi still think the same way about HIV positive people or was it just lack of knowledge because they were scared of contracting AIDS from you as they didn’t know how one can be infected? Do you think there’s been any change?]

Nontsikelelo Zwedala: Ndicinga ukuba atshitshile ngoku, ngoba cho ndisiya eNyanga, wonke umtu bebesithi bayandiralela ndiphinde ndibuye. {IsiXhosa} [I think they have changed now, because every time I go to Nyanga, they all say they wish I would come back again.]

Sindiswa Godwana: I think, it’s a fear which cause the ignorance because as far as I’m concerned the two ladies who discriminated against Ntsiki died because of HIV. So I think these ladies, they didn’t want people to pay attention to them, so, that is why the discriminated against Ntsiki instead of going to Ntsiki and ask help.

Bongiwe Mkhutyukelwa: People living with HIV and AIDS need to get treatment and in order for them to get this treatment they need to come forward. So, this discrimination thing hinders the prevention programmes. Really people can be moralistic due to fear and ignorance and reject members of there own families or communities and it’s then make it difficult for the people living with HIV to come out to say that: “Here we are. We are living with HIV.” And at that time it is very difficult for the people living with HIV to practice safer sex, so, which makes everything difficult.

Busisiwe Maqungo: Okokuqala yintoni edalwe ukuba wena uzostigmatizwa ngoko funeka uhleli, uhlale, uthulengoba uphila netshologwane. Is it because mhlambwe uyayazi into yokuba to be HIV positive is something bad. Into eyenzekhaloyo siqala sizistigmatise thina ngokwethu. {IsiXhosa} [Firstly, what makes you think you’ll be stigmatised, so keep quiet and live with the virus? Is it because you believe that being HIV positive is a bad thing? What happens is that we stigmatise ourselves.] It’s about accepting yourself. Accpet yourself so that umtu olandelayo aku amkele {IsiXhosa} [the next person can accept you].

Anthony Fernandes: You know you think that stigma doesn’t start with ourselves. I don’t believe that because I don’t think you can stigmatise yourself.

Busisiwe Maqungo: Can I ask you a question?

Anthony Fernandes: It’s like I don’t, it’s people who negative who makes comments to me.

Busisiwe Maqungo: Thina siqala sizi stgmatise ngokwethu, thina amaPWA’s. Okokuqala umzekhelo yintoni letho umtu oneswekile angakwazi ukuyifihla lento? Uyaqonda ayithetha ukuba ugqirha undifumanise ukuba nduneswekile. Siyazi moos nayo iswekile is deadly uyaqonda engahambe ikubulale, ihambe ikunqunqise imilenze but abana loyikho lokuyithetha. Yintoni lena efunny or special thina kuthi ngeHIV. Okuba uxelelwe ukuba oneHIV uzixelele ukuthi ndizakufa. Ithetha ukuthini lento leyo, ayithethi ukuba uqale wazi stigmatiza wena. Phambi yokuba the next person akustigmatise? {IsiXhosa} [We stigmatise ourselves, we PWAs. Firstly, why does a person with diabetes not hide it? They tell people that they’ve been diagnosed as diabetic. We know that diabetes is deadly. It might kill you or have your legs amputated. But they are not scared of talking about it. What is funny or special with us and HIV, that when you are told that you have it, you’ll die with it, and never talk about it? Doesn’t that mean you stigmatised yourself first before the next person did?]

Anthony Fernandes: I’m saying, that is for me a problem where the HIV thing has to become positive in the sense that people has to change their attitude and recognise this disease as something that is not linked with religion or with morals or with those kind of thing.

Busisiwe Maqungo: Kaloku {IsiXhosa} [Because], Anthony that was what I was saying that, it should begin with us, the PWAs knowing that we haven’t done anything wrong for being HIV positive. So, that the next person understands, the person who is negative understands that this person hasn’t done anything wrong. It starts with us, then goes to the next person.

Prudence Mabele: I like the fact that I am open and I’m talking to people and I educate people but I’m talking to you out there, that you say to us we are Z3 [the three letters H,I and V], I am dead, isidumbu [I am a corpse], you call us by names like that. I cannot understand why I’m educating you as a community, as a person, that I didn’t have to disclose my status for you, and you still call me by name. It’s like a red ribbon when you show your face you are a red ribbon, when you show your face you are some type of things, you know like some germ that is walking around. I feel good about myself and I know my status and I’m staying healthy and it’s none of your business. I think people should just learn to either contribute as positive as they can or just leave it and stay ignorant. {IsiZulu}

Bongiwe Mkhutyukelwa: HIV doesn’t discriminate it attacks everyone, the married, the unmarried, the young the old, the blacks, the whites, everyone. So, in order to know your HIV status you need to go for an HIV test and if tested positive you will be given medical information and emotional support and you will also learn more about positive living.

Vuyani Jacobs: You are back with Beat It! You know Nombeko, stigma is often used as an excuse for not providing treatment. Stigma is caused by fear and ignorance, treatment offers hope and breaks down stigma.

Nombeko Mpongo: Talking of treatment it’s time to catch Doctor Nombulelo again. This week she is talking to us about Bactrim, this cheap pill that can prevent so many infections. Let’s listen to the doctor.

Dr Nombulelo Madala's consulting room

Dr Nombulelo Madala (HIV/AIDS community doctor): Good day to you at home. This is Dr Nombulelo, your HIV community doctor. Thanks for joining me. Recently one of my HIV positive patients, I shall call her Nozi, came for her regular six month check-up. She is a relatively healthy lady at stage one of her disease. During her check up visit she made a complaint to me. She said: “Doctor there’s a tablet which I noticed in one of the support group meetings that other patients have but I not have it in my packet of drugs.” She said the tablet is called Bactrim. I am very glad when I see patients asking me some questions because it shows that they are taking a interest in their illness and their medication. What Nozi was asking me about was what is called Cotrimoxazole or Bactrim prophylaxis. Prophylaxis is when a drug is used to prevent an illness before the illness develops. Cotrimoxazole is an antibiotic which has been around for many years. It has been found in research that Cotrimoxazole can actually prevent some of the infections that it treats, because of this since the 1980’s Cotrimoxazole has been used in the prevention of PCP pneumonia, diarrhoea such as caused by salmonella, toxoplasma brain infection and other bacterial pneumonias in people with HIV/AIDS. As soon as a doctor assesses an HIV positive patient as having entered the middle stage of the disease, commonly known as stage 2, they will usually start the patient on a life long course of Bactrim or Cotrimoxazole at tablet per day. Cotrimoxazole is available not only as Bactrim but also as perbac and other tablets that contain Cotrimoxazole but what is important is to get a tablet that contains Cotrimoxazole one tablet a day for life as soon as a doctor assesses you as needing one. It is also a very cheap measure that is used in HIV/AIDS. It costs the state about R10 a patient per month to use Cotrimoxazole as prophylaxis. It has been proved to prolong lives by preventing and decreasing the chance of somebody developing these common killing illnesses like PCP pneumonia, toxoplasma, brain infection, salmonella diarrhoea and other bacterial pneumonias. If a person is HIV positive and have been assesses by a doctor at the clinic as having entered stage 2 of their disease they should be on a life long course of Cotrimoxazole. If you are not sure about your situation please ask your clinic doctor if you shouldn’t be on Cotrimoxazole prophylaxis. This is me signing off for today. I will see you again next week. Stay healthy.

Vuyani Jacobs: Kwakhona siyani amukela {IsiXhosa} [Welcome back to] Beat It! So People if your immune system is very low ask your doctor or nurse if you shouldn’t be on Bactrim to prevent getting all those nasty infections.

Nombeko Mpongo: Government has said that every clinic should have Bactrim. If it’s not available in your clinic you have the right to demand it.

Vuyani Jacobs: Coming up. In this weeks Special Report we meet Babalwa, an amazing young women and rape survivor, who tested HIV positive after her ordeal. Her story helps us understand the reality of rape and HIV in our country.

Special Report - Rape and Post Exposure Prophylaxis

Babalwa Thembani: Umama wami waye ndi…cela ukuba utatamncinci wami andiyise kwamakhulu. Apha endleleni kwangoku utatamncinci wami wayehamba asela. Emvani ehambe asela kwande kwalate ndamxelela, ndalila ndathi ndifuna ukungonduka because soku late, asinoba sofika kamakhulu. Wandibetha, esithi umamami uzamtukha, uzashowuta, ndiyamazi umamami ungunogqwashu, wakipha umpu edubula phezulu ke ngoku, wafuna nokundihlaba, salwa ke, sajijisana wandiwisa phansi, wafumana ichance yokundi rapa ngoku. Wemka moos, wabaleka emva kwezinyanga ezibini wabuya. Ukubuya kwakhe wabala ileta esithi ucela uxolo because umoshe ubomi wami, andizophila ixesha linde ndinale diseases ndineAIDS. Waye wazibulala ke ngoku. Ndandi qalisa iperiod, ndingena ebuntombini, ndandi na fourteen years ngo1996. Wabuza kutheni uphuma izinto zabantu abadala, kandilale nekwekwe na? ndathimna hayi kandilale nakwekwe. Yena bekacinga if arepa ivirgin iyapuma ladiseases ingene kwivirgin, so ucela uxolo andizophila ixesla elinde ndinale virus. Like ngo 1996 ndandingekayazi esisifo, akakho umtu wandixelela, ndasiza nje, ndibona abantu bathetha ngaso esisifo but ngo 1998, umama makhasweleka waphinda vele wandicacisela ukuba so mtanami unesisifo so funeka uziphathe kakhuhle. {IsiXhosa} [My mother didn’t want me around so she asked my stepfather to take me to my grandmother. On the way my uncle kept drinking. When it got late, I cried and told him I wanted to go home. Because it was late, we wouldn’t get to grandma’s. He beat me up saying my mother would swear at me. He then produced a gun and fired a shot in the air. He also wanted to stab me and we fought. He threw me to the ground; he then got a chance to rape me. He ran away and returned after two months. When he returned, he wrote a letter asking for forgiveness because he had ruined my life. I wouldn’t live long because I had AIDS. He then committed suicide. I was fourteen and started to menstruate, in 1996. He asked why I was doing old people’s things. He asked me if I had slept with boy, and I said no. He thought that if he raped a virgin the disease would be cured. So he asked for forgiveness, because I wouldn’t live long with the virus. In ’96 I didn’t know about this disease. I just heard people talk about it. I knew nothing. But in ’98 when my mother died she explained to me and said: “My child now that you have this disease, you must take good care of yourself.”]

Prof. Lynette Denny (Gynaecologist, Groote Schuur Hospital): HIV has changed the landscape of rape from being a horrendous experience, where you can acquire infections and where you can acquire, where you can become pregnant against your will, to what is really even if you are not killed, you can acquire a disease that is going to kill you. And so it’s changed the landscape and in fact whereas before we used to say the first thing you do with a rape survivor is make her feel safe, gain her trust, put her in a private place etc. Now I say: “Pop two, pop an AZT in her mouth immediately, because the sooner she takes the drug the greater the chance that it will prevent transmission.”

Babalwa Thembani: Ngelaxesha mandiretshwa, ngamapolisa andithatha andiyisa esibhedlela. Kwakufanele ukuba ndafumana amapilisi ipost exposure because kwakungekho umtu owaziyo. Ndiya bona ngoku ukuba like ngoku xa umutu unelungelo lothi xa aretshiwe uba ubekha epolisitatshini akuwulezise abheke esibhedlela azo kwazi ukufumana lapilisi isokwazi ikhawulezisa ubomi bakhe izokwazi kuncendana nobomi bakhe. La tshologwane ingakwawulezi imtyutye emzimbeni. {IsiXhosa} [When I was raped, the police took me to hospital. I should have been given a post exposure pill. Because nobody knew, but now I know that a person has the right, that if she’s been raped, the police must take her to the hospital where she’ll be given the pill so that it can save her life. So the virus cannot go through her body quickly.]

Prof. Lynette Denny: The protocol that we have in the Western Cape says that any man or woman who’s raped, who presents to a health facility within 72 hours of being raped must immediately be given antiretroviral therapy. There is always a huge gap between policy and implementation. Having the policy helps because it spurs people to implementation but a policy doesn’t mean it is going to be enacted. Even in the Western Cape there’re quiet a lot of areas where it is not functional.

Charlene Smith: If you have a child who’s been raped, she or he needs to get onto those drugs in even less than 72 hours. You take that child and you run with that child. If that child has been raped do not go to the police first, if you have been raped do not go to the police first, go to a hospital first. The hospital can phone the police. The most important thing is to get onto those drugs and get onto them fast. The police can take their statements later, the counsellors can counsel you later, but you need to get onto those drugs as fast as possible. It’s a decision that will impact on the rest of your life.

Babalwa Thembani: Njengoba igovernment sevumile like ukuba ipost exposure mayinikezelwe kwizibhedlela zonke. Mina ndicinga ukuba nase Eastern Cape, kuzozonke ikliniki ezifutshane mazikutshwe because abantu abanintsi kukhunde epolistation ukuba fanele ayoqala epolistation ayo reporta ukuthi uretshiwe. Ukuba kukhona ikliniki ekufitshane ahambe atsho kuleyo ekliniki ekliniki uzofumana amancedo uphuma embeke ipolistation kwayesefumane uncedo phaya ekliniki... And the ndicinga ukuba le post exposure (PEP) miyingena khuzozonke ikliniki. Ikliniki’s ne polistation zingunde ugovernment makazame kume ilkiniki ezifutshane ne polistation ezifusthane kwaze abantu bazo kwazi ngoncendakala masinyane. {IsiXhosa} [As the government has agreed that post exposure prophylaxis must be given at all hospitals, I think even in the Eastern Cape in all the local clinics these pills must be given, because many people may be far from the police station to report they’ve been raped. If there is a clinic nearby, they must first go to the clinic then go to the police after receiving help from the clinic. I think PEP must be available at all clinics. Clinics are far, police stations are far, so the government must try to have them nearby, so that people can access help quickly.]

Prof. Lynette Denny: I think there is commitment from government. I think there is concern in government and I think they actually really do care about the problem of rape and they are very concerned about raped women getting HIV. I think that they’re probably overwhelmed at the enormity of the problems facing them and I think that getting AZT out there and training general doctors, instead of just district surgeons, it’s an enormous task. Government needs help from us. Form medical practitioners on the ground, from those of us working at the rock face. It needs commitment from individuals to actually go and help government; they really cannot do this alone. We actually have to say we are prepared to come and help. People must come forward and say I am prepared to be trained in post-rape management; I’m prepared to train others.

Babalwa Thembani: Into endifuna ukuyi gxininisa yikuba otata babangacingi ukuba xa umtu azivile uHIV positive acinga xa adlwengula ivirgin ladiseases iyaphuma kuye, ayiphumi. Upheka ubomi bontana esicengeni, because umosha ubomi bomtanawakhe. Umtana wakhe akhazi ukuba nekamva ilibheke phambili and naye ubomi bakhe ububekha esicingeni because akazi ukuphila ixesha elinde and lomtana uzamzonda. {IsiXhosa} [What I’d like to stress is that men must not think that by raping a virgin they will be cured. It’s not cured. He puts a child’s life at risk, because he destroys his child’s life. His child will not have a future because of that. He also risks his own life because he won’t live long and the child will hate him.]

Vuyani Jacobs: We have a terrible epidemic of rape in our country; the idea that sex with a virgin can somehow cure you of HIV and AIDS is wrong. It doesn’t. Rape is a crime and it must be stopped.

Nombeko Mpongo: You know the thing I like so much about government’s decision to help rape survivors with antiretrovirals is that it shows that government really accepts that HIV does cause AIDS.

Vuyani Jacobs: Hey, maybe one day there will be treatment for all those desperately ill with AIDS as well. That positive thought brings us to the end for the show this week.

Nombeko Mpongo: Vuyani and I will be back with you next week when we bring you a programme that explains all about antiretrovirals and the difference these medicines can make to people with HIV.

Vuyani Jacobs: We hope you benefited from our show. We value your comments and feedback so please contact us on the numbers on your screen.

Nombeko Mpongo: You can catch the repeat broadcast of this show on Sunday at 11h30 in the morning. Siyayinqoba!

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