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Beat It! 2000 Episode 2

The Beat It! Team, in this episode’s special report, aimed to repute the questioning of the efficacy of HIV tests and testing kits by interviewing scientists about testing procedures. The Team also spoke to Christopher Moraka about being sick days before Christopher passed away from AIDS defining illnesses including oral thrush. Christopher’s oral thrush was treatable but because of Pfizer’s patent on fluconazole Christopher could not afford it. In the Beat It! Support Group the members discussed experiences of disclosing to family and friends.

Paddy Nhlapo: Mangiphinde nginibingelele lapho emakhaya. Ngiyanamukela kuhlelo lethu lamasonto onke. Sawubona Mercy. {IsiZulu}

Mercy Makhalemele: Dumela [Hello] Paddy. Reya hu amohela kolinanong raluna. [Welcome back to Beat It!] the only programme that serves the interests of the pos community and our supporters. {Sesotho}

Paddy Nhlapo: Okuyolandela [Up next] is a special report on HIV testing in South Africa. Is there any reason to be worried about the accuracy of the HIV test? Abaningi azange bakolwe ngekhathi bahlolwa [Many did believe when they were tested]. There have been claims also that the test is not accurate, and we wanted to see if there is any truth in this statement. {IsiZulu}

Mercy Makhalemele: We will also visit our Support Group where we will focus on disclosing your HIV status.

Paddy Nhlapo: Esizoqala ngako {IsiZulu} [What we going to start with] is this week’s profile. Most politically correct images of people living with HIV and AIDS, show people who are looking healthy enough, emphasising that there is life after diagnoses but it sometimes look as if we, who are doing the HIV media want to hide away the fact that there are millions of people who are really sick.

Mercy Makhalemele: Ke dumelana lewena Paddy. [I agree with you} Beat it! eyile ya etela [we visited] Christopher Morake who lives in Nyanga East, Cape Town. Chris has spoken out in Parliament asking government to make fluconazole available for people who’s got oesophageal thrush, hari utlweleng bakgayetsu. [let’s hear people] {Sesotho}

Christopher Moraka meeting with parliamentary portfolio committee on health

Christopher Moraka: Ja, ndizothetha nge-language yam. Ndi-HIV positive, nda-diagnoswa ngo-1996. Eh, kwi-community yam siphethwe kakubi thina bantu ba-HIV positive. Enye into endifuna ukuyichapazela, ngenye imini bendiye eCrossraods Day Hospital ndise i-rash. Ndafika pha, ibisaqala i-rash ke, ndababonisa ukuba heyi ndiphantsi ke, since ugqirha esithi mandivezi ikhadi lokuba ndiphantsi kwenatsika, kwe-trials ze-TB. Ndababonisa, abazinto. Ndabachazela ukuba ndi-HIV positive. Kwathiwa lonto leyo ungaze uphinde uyithethe. Ukusukela namhlanje ungahlali nabantu, sizaku isoleytha, ungahlali nabantu kakhulu. Kufanele ubewedwa uzihlalele wedwa endaweni, unga hlali nabantu. Mandize kwezikhampani ezenza amayeza/amachiza, iikhampani ezinje ngo-Pfizer, siyazi oo-Pfizer benza i-profiti enintsi. Ngo 1999 benze 6,5 billion rands. Besicela nakubo ke, ukuthi lamayeza makathotywe, thina abantu ba-HIV singabona abantu abasafa the rest ngoba abanye abantu abayifilishi le-pain yabona, into eyenzankalayo bayeza i-profiti yabona. {IsiXhosa} [I’ll speak in my own language. I’m HIV positive. I was diagnosed in 1996. In my community, we with HIV are abused. I went to Crossroads Day Hospital with a rash. The doctor told me to inform them that I am on a TB trial. I showed them the card. I also disclosed to them that I am HIV positive. At the Day Hospital, I was told never to disclose again, and you will be isolated form other people. You’ll be put aside on your own. Let me turn to the pharmaceutical companies. Companies like Pfizer make a lot of profit. In 1999 Pfizer made R6.5. Billion profit. We ask them to lower the price of drugs because we HIV positive people suffer the most. Other people don’t feel this pain. They want to make profit, you see.]

Narrator: Christopher Moraka died on the 27^th of July this year. His funeral took place at Nyanga on 6^th of August. Those present vowed to remember him for his courageous spirit in the fight against HIV and AIDS.

Busisiwe Maqungo: Bendingathethi ukuba zidubule, xa unalo ke ithemba, awunakuzenza zonke ezo zinto, kodwa ukuba uligwala, uyakuzenza. {IsiXhosa} [If you have HIV it does not mean you should kill yourself. When you have hope. You won’t do any of those things. But if you’re a coward you will do these things.]

Mkhanyiseli Mpalali: U taChris, ebefana okanye ebeyintsika kuthi, kwi-branch okanye isabela senyanga nombutho i-Treatment Action Campaign, ngoba endleleni kwizinto ezininzi, u taChris besomeleza. {IsiXhosa} [Chris was a pillar to us in Nyanga Branch and the Treatment Action Campaign, because on our way forward, in many aspects, Chris strengthened us.]

Narrator: We went to visit Chris and his partner Nontsikelelo a few weeks before his death

Mercy Makhalemele: Uzizwa njani khona manje bhut’Chris? {IsiZulu} [How do you feel now brother Chris?]

Mercy Makhalemele: Kubuhlungu kuphi, kwenzakalani emzimbeni wakho? {IsiZulu} [Where is the pain or where does it hurt, what's happening in your body?]

Narrator: At the time of our visit he could not really say much and he was in need of medication for treating oral thrush.

Christopher Moraka: Akusuba xa u-HIV kumandi, akumnandanga tu. {isiXhosa} [It's not as if when you are HIV is pleasant, it's not pleasant at all, it’s not a joyride.]

Christopher Moraka: Uyazazi ukuba mhh. {isiXhosa} [You know that you are going.]

Narrator: Had Christopher had access to better HIV treatment, he may have lived.

Special Report - HIV Testing

Mercy Makhalemele: It is estimated that nearly four million people in South Africa are HIV positive, but only 500 000 know that they have contracted the virus. If all pos people become aware of their status through testing, we could radically slow down the spread of the virus.

Young man: Ja, I think I want to go ahead with the test now.

Nurse: And just to tell you your blood goes to the lab with a specific number and not with your name, and therefore your result is confidential.

Doctor in the University of Cape Town’s Medical Microbiology and Virology laboratory: This is the area were we receive our specimens. I believe this is the specimen we will follow the specimen through.

Mercy Makhalemele: So is this the way my blood was transported into the laboratory.

Doctor in the laboratory: Yes it will come like this.

Mercy Makhalemele: Is it coded with no name because of confidentiality?

Doctor in the laboratory: Yes. It’s opening the lid of the reagent, it’s just opened it. Some of the samples will go into one of these positions, in the reaction vessels. It is in fact reactive.

Dr Jane Yates (Acting Head of the Department of Virology at the University of Cape Town): Reactive means that test has detected antibody, but because we won’t make a diagnoses just on one test; you need two or three reactive test to be called HIV positive

Nurse: Some patients have been diagnosed in other areas and, I don’t know if it’s because of the shock, they still come back and feel they want to be retested, they don’t believe it.

Mercy Makhalemele: Recently, questions have been raised about the accuracy of these tests. The key to testing is a reagent; a special chemical that produces a reaction with specific HIV antibodies produced by your immune system. Let’s go and speak to Dr Yates.

Dr Jane Yates: What I’ve got here is a picture, a photograph, of the HIV virus, magnified 350 000 times and this is a very simplified picture of the HIV virus, and eventually it’s got a membrane around the whole virus. In the membrane there are proteins stuck into the membrane, different types of proteins. Now, when the virus gets into your body, your immune system sees it and sees that it is something foreign, and one of the responses of the immune system is to make antibodies to the virus; and antibodies are little proteins that are made in an exact fit to a foreign protein. So, each of the virus proteins will have an antibody produced to it, well in fact a whole lot of antibodies… even the internal proteins.

Dr Diana Hardy (Acting head of the Department of Virology at the University of Cape Town): Certainly the rates of false positivity was much higher in those early tests; sometimes attributed to pregnancy or other chronic diseases that the person might have. But now that we have so much pure preparations of antigens it’s very, very rare for someone to have antibodies in their blood that are binding non specifically to these highly pure HIV antigens.

Dr Jane Yates: So when we do HIV tests, most of the tests that we do are actually testing for antibodies that your immune system makes, not for the virus itself. And we can do this because antibodies are very, very specific in what they recognize. So we can do a test which is just for HIV antibodies, and it won’t detect measles antibodies, or antibodies to herpes viruses.

Phumela Bassie (HIV/AIDS Counsellor, Khayelitsha): Many patients are coming because they’ve been referred by doctors for various illnesses that they must do HIV test as part of the investigation. Some of them, they come voluntarily, because they are interested to know their status, and some of them because they have heard about available treatment.

Dr Jane Yates: They can be monitored, they can go on into medication like Bactrim which prevents Pneumosistys Pneumonia which is a very common Illiness in HIV. They can go on, if they are in contact with people with TB, they can go on to drugs that can stop them from getting TB. Those will be the medical reasons to test even if you can’t have anti-HIV drugs.

Nurse: i-HIV yona you can stay a longer life unayo. Ukuba ngaba uzilolongele wena, nayo ikunika ithuba ukuba uzipreparishe ukuba uzathini na? {IsiXhosa} [When you are HIV positive you can stay healthy longer if you know how to take care of yourself. It gives you a chance to prepare yourself.]

Mercy Makhalemele: HIV testing does not require expensive equipment or labs. In Khayelitsha Michael Mapongwane Clinic rapid HIV test kits have been introduced. The rapid test allow primary healthcare clinics to perform accurate HIV/AIDS tests which gives the results within half an hour. Sister Matinisi takes a blood sample and adds a reagent which reacts only with HIV antibodies in the blood. Let’s see what happens. When she finds a positive result, a second confirmatory test is performed. The use of two tests practically eliminates the chances of a false positive result

Mercy Makhalemele: Right in front of us we have five bloods tested and there is one amongst five that is HIV positive. And this proves the data and the statistics, how it says, there’s one amongst five people are getting infected.

Mercy Makhalemele: Directly after infection, there are not enough antibodies in the blood to be picked up by an HIV test. Only after six weeks will an HIV test be able to detect the presence of these antibodies.

Dr Diana Hardy: There’s a known time of exposure; for four to six weeks. After that time the virus may be replicating in the blood, but antibodies are not yet detectable.

Dr Jane Yates: The window period then is the time from exposure to the time when you can start detecting antibodies.

Mercy Makhalemele: You’ve done your HIV test, athini ama-results? {IsiZulu} [what were the result?]

Woman: Ama-result aphume engu-negathivu sisi. {IsiXhosa} [My result was negative sisi.]

Mercy Makhalemele: So, awunalo igciwane lengculaza? {IsiZulu} [So you don’t have HIV?]

Woman: Hayi sisi {IsiXhosa} [No sister].

Mercy Makhalemele: Uzizwa njani? {IsiZulu} [How do you feel?]

Woman: Ndizozama ukuziqoqosha kangangoko ndinako, ukusukela namhlanje ndisebenzise icondom. {IsiXhosa} [I feel happy sisi. I will try to ensure that I use a condom from now on.]

Paddy Nhlapo: You are watching Beat it! – your guide to better living with HIV and AIDS, coming up in this section we visit our Support Group.

Mercy Makhalemele: Disclosing your HIV status is the most difficult moment for all of us, but it is also the most important step you can take towards preventing the spread of the epidemic.

Paddy Nhlapo: We all fear discrimination and rejection by our families, but living in silence and denial is much more worse. It can really drive you crazy. After you start to disclose, you also start to find out where you can get support, treatment, and it’s easier to take responsibility for not spreading the virus.

Mercy Makhalemele: So, let’s go.

Support Group

Faghmeda Miller: I really am, once again, I’m sure we all really want to thank you for providing your house to us for the day and it was nice seeing you all again since the last time that we’ve met. Today I think we can discuss maybe disclosure, why must we come out? Do we have a right to come out?

Antoinette Fouché: Die eerste mense wie ek vertel het, dat ek HIV positief was, was vir ‘strangers’, vir mense wat ek glad nie ken nie. En daai mense het actually opgetreë teenoor my, dis ’n nice way, in ’n nice way: “Dis okay, dis okay to be HIV positive”, hulle was nie regtig sleg teenoor my nie. En die feit dat mense my aanvaar het, het my stelsel maatig gemaak: “Okay daai mense aanvaar my ek kan maar vir iemand anders ook vertel.” {Afrikaans} [The first people I disclosed to were strangers. People I didn’t know at all. They weren’t nasty to me. “It’s okay to be HIV positive.” They didn’t really treat me bad. And the fact that people accepted me made me feel confident to disclose.]

Faghmeda Miller: When I discovered that I was HIV positive, I thought I was going to hide forever. But as time went by, I realised, you know, a lot of people can actually learn from me, from my experience.

Mercy Makhalemele: The fact that I got infected through my marriage, I was very angry because there was no honesty, it seems as if there was no honesty, you know and secondly I was in a situation where I was also angry when I gave birth with my baby when the healthcare worker just left me like that, without attending to me after birth. So all this anger, I had to throw it somewhere. And there was no way I could think: “Where do I go and who do I tell?”

Marius Thomas: Ek kom mos van die plaas af en ek sal nie ophou om te sê ek kom van die plaas af nie, want dis ‘n ander situasie daar, en veral as jy mamma se klein kind is, dan kan ek nie vir mamma gesê het nie want as mamma ‘n hart aanval kry of ‘n stroke; sê al die mense dis my skuld. So, ek wou nie my ma gesê het nie. Maar toe bel ek nou my sister wat ’n nurse is, en sy’s ’n baie, jy ken mos daai mense in die familie wat kan praat, uit praat, ’n kekkel bek en ek geweet sy gaan net pressies weet hoe om dit vir mamma te sê en die res van die mense sê. Toe’s dit nou uit. Want ek het net gekom, ek moet vir haar sê kyk, of sy het net twee keuses, of sy aanvaar my met my virus of sy aanvaar, of sy dinges vir my, sy ja’ my weg. Gelukkig het sy net gesê: “Ja Meintjies all right” en daai en daai en daai. En sulke goeters. Maar dit was moelik gewees; mens kyk jou op en af: “Wat gaan met jou aan?” of “Hoe’t jy gekry?” “Wat is jou storie?” “Is dit jou moffieskap wat gemaak het dat jy die virus gekry het?” Sien jy; dan wil mens maar nie praat nie. En ek het gebesluit: “Damn die mense; dies al weer my ligaam, dis nou weer my lewe, so ek sal sê.” {Afrikaans} [I come from a farm. I will never stop saying that I come from a farm because it’s a different situation especially when you’re the youngest. I couldn’t tell my mother because if she had a stroke everybody would blame me. So I didn’t want to tell her. So I phoned my sister, who is a nurse; she’s the gossip in the family, and I knew she’d know how to tell the rest of the family and then it was out. And I told her they had only two choices: They either accept me with my virus or they reject me. So they chose to accept me, happily. But it was difficult. People look at you differently: “What’s wrong with you?” or “How did you get it? What is your story? Is it because you’re gay?” And you’d rather not talk. And I decided: “Damn these people. This is my body. This is my life. And I will talk.”]

Mkhanyiseli Mpalali: Izolo bendihamba no-Mandla, i-colleague yam endisebenzanayo eKapa. Now sisuka uyobona ubhut’Chris, xa sifika kutshixiwe phakathi kuye endlini. Ndidibane ne-friend yam ibuze ukuba, (ndixibe iribbon), yintoni le-ribbon oyixibileyo, uthethantoni ngalento. Ndithi nam ke the reason why ndinxibe le-ribbon ndibonikalisa intsebenziswano kubantu abane AIDS, abantu aba-HIV and also nam ndinjalo. Hayibo thetha enyinto mfondini, ngoku kanye ubufuna ukungenela i-SANDF ubuzokwenza kanjani because u-aware ukuthi umtu o-HIV positive akaqualifayi for i-army. {IsiXhosa} [Yesterday I went with a friend to Chris’ house. A friend we met asked what the red ribbon is for, if you don’t have HIV. I said the reason I’m wearing this ribbon is to show support for people with HIV. And I’m one of them. He said do you know that the SANDF does not accept people with HIV?]

Paddy Nhlapo: You know first I was directed to a very good doctor, you know I didn’t just go to a doctor who knew nothing; there’s this particular doctor, he’s good on issues that are related to HIV and AIDS, you understand, so those are the advantages of disclosure you see, at the same time when you disclose you, you, you do have problems in relationships.

Antoinette Fouché: Na die tyd het ek so hier en daar ’n paar mal mense gekry; as jy dit so kan stel? Wat as ek in ‘n glas gedrink het dan het hulle gesê: “Hoor hier daai vroumens het HIV, moenie aan daai glas drink nie; en raak ontsla van al die glasse.” So dit gebeur dat party van ons sulke ervaarings gehad het, sulke lelike ervaarings wat ’n mens, ’n mens dalk half skrikerig kan maak om oop te praat of te ‘disclose’. {Afrikaans} [Afterwards I came across a few mad people. Who, when I drank out of a glass, said: “Don’t touch that, that woman has HIV. And get rid of all the glasses.” So it happens that some of us have unpleasant experiences that may prevent us from disclosing in future.]

Mercy Makhalemele: I started telling my husband, and I was beaten up like crazy. I mean, I have fourteen stitches on my head, I have a burned arm. And the next morning, I went to work. He came to work and he was talking so I was dismissed from work. The woman who worked with me heard what was happening, and I was chased out of work.

Paddy Nhlapo: I know I did lose lots of friends, who sort of repel themselves on me but now they are all coming back that they can see that I’m not skinny and puny as they expected you see the kinda thing.

Faghmeda Miller: When I came out from the community it was very tough for me. In fact it took me round about two years before I actually came out and this I did on the radio. I did have the guts to go out tell my families that: “Look I’m HIV positive.” I was scared that they were going to reject me.

Sindiswa Godwana: Okay, ndiyamazi utat’am undithanda qhiti ebantwaneni bakhe, uyaqonda. So, ndafowna ke, wathi utat’am hey Mesi, lento uziva nini? Ndathi mna ndizive kulonyaka uphelelileyo. Khutheni ungasixeleli, ndathi mna bendingekho ready ukuxelela, ndi-ready ngoku ukuxelela. Wathi okay! Jonga ke mntan’am ufike please, ndizakubiza, ndizothengisa inkomo, ndizakusa eFree State kukhona umtu oyinyangayo lento. Ndathi mna ohayi, wathi jonga, jonga xa ndikubiza ufike ngoku ngoku. Ndathi okay. Ndaqonda okay utata uyandicingela ukuba, umtwana wam inoba ukweyiphi imeko. So kuzoba bhetele xa ndimxelela ephambi kwam, ndithi hayi man jonga kaloku lento ayiqutyhwa oluhlobo. {IsiXhosa} [I know I’m my father’s favourite. I called my dad. He asked: “When did you hear about this (HIV)?” I told him: “Last year.” He said: “Why didn’t you tell us?” I said: “At that time I was not ready.” He said: “Look my child, please come back. I will sell a cow for you. I will take you to the Free State. There is someone who can cure this.” He said: “Look, when I call, you must come now, now, now.” I understand my father is thinking about my situation. So it is better to tell him face to face that this thing doesn’t go like that.]

Paddy Nhlapo: I just want to bring this to the group. Do you really need to disclose to everyone you meet? I mean, I meet you today and before we just go on it, and I go like: “Listen honey, I am HIV positive.”

Busisiwe Maqungo: In my case, I don’t tell, but I just tell him: “No, I don’t undergo the sexual intercourse without a condom.”

Mercy Makhalemele: But all in all my experience with disclosure, it happened merely because of my anger, and I thought, well I have to channel it in the right direction. Had I not, maybe I could have been one of the people that went out and infected a whole lot of people, but I didn’t choose to do that, maybe because I was told that there is life, and the most important thing is for you to not re-infect yourself, to give the virus much more energy and life inside.

Adeline Mangcu: I discovered that from an ordinary flu a person living with HIV/AIDS will not get cured from the cold or flu, if they actually just go there and get the usually things that everybody gets. It’s necessary to the pharmacist were I go if they can’t remember I remind them that I’m the lady that is living with HIV/AIDS, this is what has been prescribed for me, look into your records and remember what I was given, that didn’t work that is why I’m here. I’m not going back to the doctor give me something else and they explained every time that if I get something that I did, if I don’t disclose I will always get medicine that won’t help me.

Faghmeda Miller: Before, I was a very shy person; I never used to go out, but today I go out in the community and I speak about HIV and AIDS. Ja, I can say it have changed my life for the better and I just want to talk about, I just want to tell everyone: “It’s okay, when you are HIV positive you’re not going to die now, life goes on.”

Paddy Nhlapo: Someone once said there are more AIDS consultants around than people living openly with HIV and AIDS. Well, that is beginning to change. More and more people are disclosing.

Mercy Makhalemele: It really is only the pos community who can bring this epidemic under control

Paddy Nhlapo: Now it is time for us to present this week’s Red Ribbon and Noose Awards.

Red Ribbon and Red Noose awards

Mercy Makhalemele: Right, the Red Noose which goes to someone who has disregarded the rights of someone living with HIV and AIDS, so let’s start with the Noose. This week we are pleased to present the Noose to the Pharmaceutical Manufacturers Association and their hired gun, none other than Mirryena Deeb, for resuming their court case against our government. They have decided to go on with the case with the aim of keeping the cost of AIDS medicine high at the expense of the Pos Community. We think this is shameful, and they really well deserve the Noose. Asibahange. {IsiZulu} [Let’s hang them.]

Paddy Nhlapo: Moving on to happier things; this week’s Beat It! Red Ribbon Award for an outstanding contribution to the struggle against HIV and AIDS must go to Sister Matinisi at Khayelitsha Michael Mapongwane Clinic. It is these dedicated healthcare workers, like her, who will make it possible for a national mother-to-child-transmission prevention programme to be rolled out nationally.

Mercy Makhalemele: I’m into that, and that’s our programme for this week. We hope you enjoyed watching and remember we really value your feedback, comments and suggestions. So contact us on the number given below.

Paddy Nhlapo: Until next week at half past twelve on e, remember to watch Beat It!

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