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Beat It! 2000 Episode 3

In this third episode of the 2000 series the Beat It! Team included a profile of Mary Smith, a woman from Atlantis in the Western Cape who found life after diagnosis. In the Special Report we looked at the successes of the PMTCT programme in Khayelitsha and how the provision of this prevention programme encouraged mothers-to-be to test for HIV. In the Support Group Dr Hermann Reuter answered the members’ questions about the progression of HIV and various opportunistic infections. Dr Reuter also gave practical rules for better living with HIV.

Mercy Makhalemele: You again, how come I only see you when it’s time to do the programme, where have you been hiding?

Paddy Nhlapo: Yes, I’ve been having fun. You know, being positive it’s not a job like some people think it is. I do have a life you know, a private life.

Mercy Makhalemele: Cool, so tell me people what’s on the programme this week?

Paddy Nhlapo: Okay, here it goes. On Beat It! this week, we go to Khayelitsha which has been leading the country in introducing an effective mother-to-child-transmission prevention programme. We check out the impact of the programme, and the link between providing treatment and the willingness of people to volunteer for HIV testing.

Mercy Makhalemele: After the break, we are back with our Support Group where we get into some treatment literacy with Dr Herman.

Paddy Nhlapo: And then, on to the Red Noose and the Red Ribbon Awards.

Mercy Makhalemele: But first of all our profile. We so often hear the people say there is life after diagnosis, and I think no-one sums that up better than this week’s profile of Mary Smith of Atlantis.

Profile - Mary Smith

Mary Smith: Goeie morê dan. My naam is Mary Smith en ek is verbonde aan … HIV/AIDS Mission. En ek wil van morê vir u ’n paar inligting stukke gee oor HIV/VIGS. U weet dis ’n virus wat nou onder ons is en het gekom om te kom bly. {Afrikaans} [Good morning then. My name is Mary Smith and I am linked to the … HIV/AIDS Mission. And this morning I want to give you some information on HIV/AIDS. As you know, this is a virus that is amongst us and it has come to stay.]

Mary Smith: My story started when my husband became very ill and we’ve been to almost every doctor in this place and also to the hospital, and then finally we went to doctor nearby? And he said: “Okay, let’s take some blood sample for HIV. I think it was after three days, he phoned so that we must come in; he has the results and we went and the doctor asks us if we know anything about AIDS. I said: “AIDS? Yes.” I said: “You get AIDS from sexual intercourse.” So the doctor said: “I’m sad to say, but your husband has got AIDS, and you also have to be tested.” Then, my blood was taken, and the following day or two, my husband died. And then, he phoned me and I went in and he said: “I’m sorry to say but you are also HIV-positive, and you have only two years to live.” The following few days, you know I remember that time it was in June. It was the first time that June looked so beautiful to me but I think that was a piece of grace from God because it didn’t rain, the sun was shinning the days was beautiful, I could, really every morning I got new hope. But after the funeral I fell into deep depression and that happened for two years. I thought that well I might as well die now. I went through all the motions, denial, and, when I got to the anger stage, I was really angry because of what the doctor said, because I thought that no-one has the right to tell you that you have only two years to live. At that time, there was people that supported me. I joined a group in Belleville, the Northern Area AIDS Action Group and they taught me that it’s okay to cry, it’s okay to be angry, and they really helped me. From then on, I also learnt to disclose and that was really a healing process for me. It’s been five years since I’ve heard that I’m HIV positive and in this five years I’ve learned about a lot about life itself. I must say I’m one of the lucky ones I heard people being discriminated against but not one person has ever discriminated against me. Now I also want to go into the community and say that there is life after knowing that you’re HIV-positive and this is the ninth month of my second marriage, and I can also say my husband is not HIV, he’s negative, so he’s a special guy. It’s just wonderful to know, I had a second chance.

Son: Ek dink hulle moet probeer om ’n cure te kry want ek wil nog nie hê my ma moet nou al doed gaan nie want ek is nou agteen; my ma kyk nog baie vir my. Al moet ek ook miskien daar in gaan om te soek, as ek ouer is, dokter of so. {Afrikaans} [I want them to try and get a cure. I don’t want my mother to die yet. I’m 18 now. My mother still looks out for me. The only way I can really do research is if I become a doctor when I’m older.]

Mary Smith: I’m at this stage, I’m really you know challenging this virus, that’s in my body. So I challenge our community to really reach out, you know, not just to know it couldn’t happen to me or it doesn’t happen or I don’t know, it’s not my family but to reach out. There is two organisations in Atlantis that want to reach out to people to help them, to help their families.

Mary Smith: In ’n land soos ons sinne waar ons verneem dat daar elke 26 sekondes ’n vrou gemolesteer word, onsedelik aangerand word, is dit my boedskap dat elke vrou haar sal moet bewapen met kennis. Vigs het gekom om te kom bly; hy’t nie kom kuier nie {Afrikaans} [In a country like ours where a woman gets molested every 26 seconds, it is my message that every woman should arm herself with knowledge. AIDS has come to stay. It’s not just visiting.]

Special Report - Khayelitsha Project

Narrator: Phumeza is HIV positive. She has received AZT which has prevented her from infecting her baby during pregnancy. She is preparing a bottle for her baby, since breastfeeding can pass on the virus to her healthy HIV negative baby. She is one of the seven thousand women who have become involved in the Khayelitsha, mother-to-child-transmission prevention project.

Dr Faried Abdullah (Chief Director Support Services Western Cape): The programme in Khayelitsha is a service that the Health Department in the Western Cape is offering.

Dr Lawrence Bitalo (Chief Medical Officer, Khayelitsha): My responsibility basically is to ensure that medical services are provided in the community of Khayelitsha.

Dr Faried Abdullah (Chief Director Support Services Western Cape): Instead of doing it throughout the province, we’ve opted to do it in one area and to get all the logistics and the operational aspects of such a programme right.

Dr Lawrence Bitalo (Chief Medical Officer, Khayelitsha): The epidemic is a disaster. The plane has crashed.

Dr Faried Abdullah (Chief Director Support Services Western Cape): Within a couple of months we will do an evaluation, together with the National Department., and that will be fed into all the different projects, throughout the country, to help the National Department decide its future policy.

Dr Lawrence Bitalo (Chief Medical Officer, Khayelitsha): What we have calculated is that the direct costs that you add to the programme are for drugs only. In some cases, the health work providers maybe just fear imagining that it will be extra work. It’s natural for workers to create those sorts of imaginations. But I think workers on the ground, midwives and all of them across have no problem. We just need somebody at national level to take a firm stand.

Dr Faried Abdullah (Chief Director Support Services Western Cape): And we certainly would like to see a decision sooner rather than later. The mother-to-child-transmission programme in Khayelitsha has opened up the disease, everybody talks about it. The women are all in a group. We don’t just give them the drug and then leave them support alone. Most of them have informed their partners, and the majority have actually been supported by their partners.

Support group member: Usisi okhoyo phakathi kwethu uzobalisela ababantu bafikayo ukuthi yintoni i-AZT, yenze ntoni kuye. {IsiXhosa} [We have one of our ladies here who will further enlighten us on what AZT has done for her.]

Member: Okay, ngethuba mina ndibhukisha e-Micheal Mophangwana, ndiye ndaxelelwa ngokuba i-AZT ndizayifumana xa ena-eight months, so ndiye ndayinikwa ke i-AZT xa ndina eight months. So ndiye ndayifumana ke, ndabeleka umtwana wam, waphuma e-negative xa ena-nine months. {IsiXhosa} [When I went to book at Michael Maphongwana, I was told that I would get AZT at eight months. I received AZT at eight months and my baby tested negative at nine months.]

Dr Eric Goemaere (Head of Medicine Sans Frontiers, South Africa): All the women coming to the antenatal consultation are told; look we have a drug AZT because we use a protocol with AZT. We have the drug that can prevent the transmission, unfortunately not by 100%, bim ut half of it. But we need to know whether you are positive, or not. And what is amazing is that, among the 7000 women, almost 7000 last year that came for antenatal consultation, 75% of women accepted to go for the test. Why did they accept? This was already available before, but nobody would go for a test. Why would they go? There was nothing to win there. Now they accept it, because they knew that it won’t do any difference for them to go for a test, but at least for their baby, they could prevent the transmission.

Phumeza Bikwe: e-Micheal Maphongwana ndixelelwe ke ukuba ndizonikwa ipilisi, kwathiwa yi-AZT. Ezipilisi zikukhulisela umtwana. {IsiXhosa} [At Michael Maphongwana I was given the tablet AZT. These tablets protect the baby.]

Dr Lawrence Bitalo (Chief Medical Officer, Khayelitsha): What, one of the things we learnt is that we started thinking for the community too much. Saying no, the community will fear stigma. The community will not disclose.

Phumeza Bikwe: Ndithe ndagoduka ngo-Februwari, umtwana ndimbeleki nge-two ka-December, ndagoduka ngo-February. And umntu endifike ndamxelela ngumakhulu nomama wam. Bandibuza mos khuteni umtwana ndingamncancisi, ndathi hayi akhange alifune, sibaninzi mos endlini. Kwalile ke ngoku xa sesisodwa ndamxelela, mama into eyenza uAnelisa angancanci, ndathi ndikhulelwe ndatsalwa igazi kwafumaniseka ukuba ndi-HIV positive. So kwathiwa ke ngoku akunokwazi ndimncancise kusenokwenzeka umntwana akasulelekanga, or kusenokwenzeka usululekile, so kufuneka ndingamongezi xa ndimncancisa ndiyamongeza. {IsiXhosa} [I gave birth in December and I went up to see my family in February. The people I disclosed to were my grandmother and mother. I was asked why I did not breastfeed. I avoided answering because there were too many people in the house. When I was alone with my grandmother and mother, I told them that I cannot breastfeed the baby because I have HIV. She could be HIV negative and I might infect her through breastfeeding.]

Dr Lawrence Bitalo (Chief Medical Officer, Khayelitsha): In practice the community was already waiting, they just were looking out for an opportunity where they can go and test. They are looking for an opportunity to go to midwives and say, look we have this service. As soon as we said: “We’re start”, they just walked in. The mothers themselves started support groups.

Dr Eric Goemaere (Head of Medicine Sans Frontiers: South Africa): We thought it was not really fair for those mothers you know, to go for a test and after delivery, for the one who’ve been detected positive to be left alone.

Support group member: Ndicela ukubuza wethu mna sisi, le-AZT xa uyinikwa pha kuthiwa iyanceda, iyayiphelisa lentshologwana? {IsiXhosa} [I would like to ask if AZT kills the virus?]

Another mother: I-AZT akuthiwa iyayiphelisa intshologwane, yenzela ngelathuba uzobeleka nne. Uba unayo mos intshologwane, ibezantsi inganyuki ebephezulu kwezingalayo uyaqonda. Ayincedi la-AZT. {isiXhosa} [AZT does not kill the virus. But it lowers the virus during labour. But no, AZT does not kill the virus.]

Dr Eric Goemaere (Head of Medicine Sans Frontiers: South Africa): And we are committed to follow them, treat their opportunistic infection which, certainly as we know, will prolong their life.

Phumeza Bikwe: Ndiva ndonwabile na xa, intlungu eyokuba ndizomshiya. {IsiXhosa} [I was happy. But my only worry is that I might die one day and leave her.]

Dr Lawrence Bitalo (Chief Medical Officer, Khayelitsha): We underrate the public a lot. People read a lot, they read a lot, people listen to radio, people listen to TV. The public is well educated. Nobody should say they don’t know. They know.

Sister Matinisi: Ukhona na umtu oyaziyo i-HIV uba yintoni apha kuni? Nazi ntoni nge-AZT? Niyayazi lento, niyivephi? {IsiXhosa} [Is there anyone who knows what HIV is? What do you know about AZT? You know, where did you hear?]

Mother: Kumabonakunde, kwi-radio nalapha ekliniki. {IsiXhosa} [From TV, the radio and here at the clinic.]

Dr Faried Abdullah (Chief Director Support Services Western Cape): We estimated that for every rand we spend on prevention-of-mother-to-child-transmission, that we will save something like two and a half grand on reduced admissions to our hospitals.

Dr Eric Goemaere (Head of Medicine Sans Frontiers: South Africa): So if you calculate, this means more than 500 children born HIV-positive, each year, only here in Khayelitsha, each year. With this programme, we can prevent half of them, so we can save at least 250 children from a certain death. Thing’s worth to do.

Dr Faried Abdullah (Chief Director Support Services Western Cape): So I’m really looking for two decisions. One is a budget allocation from the provincial government and two is a national policy decision before expanding the programme.

Dr Lawrence Bitalo (Chief Medical Officer, Khayelitsha): Mother-to-child-transmission or no mother-to-child-transmission, still you have to council your mothers antenatally. Any good antenatal care maternity service would do all those things that we do in mother-to-child-transmission. It’s the will that is needed to add on mother-to-child-transmission to antenatal care, that’s all.

Mercy Makhalemele: Look how she comes so quick.

Paddy Nhlapo: Hey Mercy, we really need this mother-to-child-transmission prevention programme to be introduced all over South Africa and the rest of Africa as well.

Mercy Makhalemele: It’s not just words that you are saying. 70 000 babies are being born with HIV every year, and we could prevent most of that.

Paddy Nhlapo: What Khayelitsha shows is that if you provide treatment, people will come forward for testing and that will help bring the epidemic under control.

Mercy Makhalemele: Moving on to our next support group, Dr Hermann will be coming to talk to us how to stay healthy with HIV.

Support Group

Busisiwe Maqungo: And I would like to know about this rumour goes, if you don’t get sick after you’ve been diagnosed with HIV. You start becoming ill, you just die, if I may put it that way.

Dr Hermann Reuter: We see a lot of women because their baby gets sick; I know that was the problem with Busisiwe, her baby got sick first and then she was diagnosed afterward. And her body was basically still strong, because it needs a long time, a couple of years, eight years or so, for the virus to actually weaken your body. Other people, especially men who don’t get tested because of their baby getting sick or who don’t get tested because they voluntarily go for a test, they get diagnosed late often, because they only get diagnosed if they’ve got severe TB, or if they’ve got some other disease that is uncommon, and the immune system is already weak at that stage. For you who knows early, you’ve got many years to wait, and when you get sick you won’t die quicker than anybody else who gets diagnosed late. Actually, because you know early, you’ve got many things you can do to prevent your immune system from degenerating further.

Faghmeda Miller: I myself have also never been ill, but I also have the problem of the glands. Even at times my neck get very stiff, like today, and it’s very painful. And I would like to know what is the cause of that?

Dr Hermann Reuter: Actually the swollen lymph nodes is a sign that your immune system is fighting the virus, because in the beginning, your immune system is strong and it’s trying to get down the virus, and that’s why the lymph nodes swell. However, if the lymph nodes get bigger than two centimeters, or if they are painful, then one might have to investigate further whether you don’t have TB inside the lymph nodes. The immune system is a very complex system, and that is why it’s often difficult to understand the effect that certain things have on the immune system. If you have a bacterial infection in your skin, there’s a germ in your skin, one part of the immune system gets stimulated to fight that germ. And as it has to fight that germ it has to produce more cells to attack those germs, and as it stimulates itself to produce more cells, it actually helps the virus, because the virus is living inside your immune system, inside the CD4 cells it’s actually helping them to replicate, to produce more virus faster.

Paddy Nlapho: So what you mean, Herman, is that if one has an infection, no matter how minor or small, you need to treat it immediately, because that helps your immune system and helps to stabilize the virus in our bodies.

Dr Hermann Reuter: That’s correct.

Mercy Makhalemele: When you get an infection, you say your immune system tries to fight the infection, and by doing that it gives the virus an opportunity to replicate.

Adeline Mangcu: Njengoba ke kusithiwa kufanele uyitsibele ngoko na ngoko into ene-infection ekhoyo. Njeng’ba uyitsibela msinya yonke ke ngoku into izivela ihle ihlale ngendawo yayo. I-infection imkile ne-virus ithi chu pha kulandawo siyibeke kuyo ezantsi. {IsiXhosa} [As they say, that when you see that you have infection quickly protect yourself from that, because if you do away with the infection it will go down and the virus will also be in its place were it suppose to be.]

Dr Hermann Reuter: We often find people hear that HIV cannot be treated, and if they feel ill, if they see they’ve got some problem, they don’t come to the doctor immediately because they see they think ‘It’s HIV, it cannot be treated’. That’s wrong. All the little ailments that come first, we have got treatments for that and they need to be treated. Otherwise the AIDS, bad HIV infections, come much faster.

Antoinette Fouché: Nou ek het nie eintlik baie probleme ervaar toe ek net uitgevind het nie maar daar is twee goed wat met my gebeur het wat baie ‘awkward’ is en dit is dat ek vir omtrent drie maande, en al twee hierdie goed het op die selfde tyd gebeur, vir drie maande het ek aan een ‘diarrhoea’ gehad maar dit was vir so twee weke diarrhoea en dan’t dit opgehou en dan’s dit weer ‘constipation’ vir twee weke. En in daai selde tyd wat ek diarrhoea gehad het, het ek omtrent vir drie maande lank menstruasie aan een gehad. {Afrikaans} [I didn’t have many problems but there were two things that were very awkward. For three months these two things happened simultaneously. I had diarrhoea and then constipation for three months on end. And at the same time I had continuous menstruation.]

Dr Hermann Reuter: Often diarrhoea is caused by a nervous response, by the nervous system not coping. And especially also with the menstruation that came at the same time. We know the menstruation is controlled by your brain, and with the anxiety, the depression, the fear that goes along with hearing about your HIV positive diagnosis, we often see symptoms. The stress also weakens your immune system, and we know there’s a close relation between your emotions and the health of your immune system.

Marius Thomas: Okay, nou weet jy van jou status, jy’t die inligting, jy het counselling, jy’s in a support group, so jou dinge moet nou reg. En dis nie, dis nie die geval nie, want baie keer gebeur daar dinge wat jou weer ‘n bietjie laat af voel. {Afrikaans} [Now you know about your status. You’ve got counselling, information, you’re in a support group. So things are supposed to go right for you now. But that’s now always the case. Sometimes things happen that make you feel down.]

Dr Hermann Reuter: That’s why it’s important to deal with the stress and to deal with the anxiety that you feel when you hear about your HIV diagnoses. Pre and post test counselling forms an essential part to coping with the diagnoses. You find the better somebody has been coping with the diseases before they get tested the easier it is to copy with the diseases once you hear about your diagnoses. Although the depression is an organic thing happening in your brain, it’s often things in your environment that make you get the depression. One of the common things is chronic illnesses; somebody who’s got cancer is most likely to develop depression, people losing their jobs, losing a partner. Another thing causing depression if you feel an outsider, if you don’t feel the community anymore. And I think, often, we think just by counselling, we can combat depression. And I think often we actually have to discuss it with our doctors and say: “I don’t enjoy anything any more, I get irritated with people, I can’t cope at work anymore, I don’t sleep at night”, and all of those things are a problem with depression, and they should be treated with anti-depressant medication.

Adeline Mangcu: I never expected me to have candida.

Maruis Thomas: Wat is ‘candida’? {Afrikaans} [What is candida?]

Adeline Mangcu: Candida is when your mouth feels it’s got something very woolly, you know, and then your tongue gets very white, it gets white stuff on it. Now with women, that stuff also goes into your vaginal area and genitals. It’s itchy, it’s annoying. The thing is, if is a recurring thing and it’s in our bodies and it’s in our vaginas as a woman. There could be something that you could be taking. You would need to have something that’s gonna help you, at least, to keep it low. I don’t know.

Dr Hermann Reuter: One of the things the doctors often mention is to try and avoid sugar, because sugar basically gives energy to the candida to try and grow faster. My own belief is that, with that sugar, we keep our body going with energy, and energy’s very important. And the nutrition we receive by eating food, by eating puddings, by eating anything with sugar, is important. Candida can be treated with medication. If the candida, if the thrush comes again on medication, it means that it’s resistant, and then you should be getting a stronger medication. Until, at the end, you would be getting a medication called fluconazole, which was in the media in SA a lot, because of the campaign of the Treatment Action Campaign to bring down the price of this medication. But on top of that, it also helps to do some exercises to get rid of stress. Dancing is a very good way to get rid of stress. Just listening to music and moving your body, because moving your body, it shows your body that you’re still capable, you’ve got control over yourself. I’m not talking about slow-motion dancing. Actually, talking about dancing that gets you sweating, because it also exercises you.

Mercy Makhalemele: So its Red Ribbon and Red Noose time again.

Red Ribbon and Red Noose Awards

Paddy Nhlapo: Seeing that we’re talking about Khayelitsha, where they are using AZT to prevent mothers passing HIV onto their babies, I think we should give the noose to Glaxo Wellcome. They are the people who manufacture AZT. Their price for a months supply to public sector hospitals was about 800, then it was about 400, not it’s abut 220. What is that if not profiteering? It shows that, with pressure, we can bring the price down. Our government could get AZT for even less, just 180 for a month’s supply from India. So why doesn’t Glaxo just give up their patent rights for African countries? Tell you what, Glaxo, when you do then we’ll be the first to give you an award. In the meantime, Booo.

Mercy Makhalemele: At least this time I get to give the Red Ribbon award, which goes to someone who has made a difference to the struggle against HIV and AIDS. And this week I am proud to give the award to Fatima Hassan and the AIDS Law Project. Fatima won the case against South African Airways, which unfairly excluded him from employment as an air steward because he tested positive. Thanks to cases like this, the message is going through that excluding people from employment because of their HIV status, it’s illegal.

Paddy Nhlapo: That’s the programme for this week; we really appreciate hearing from you. So contact us with your news, views and comments at the numbers on the screen below. See you next week at half past twelve on e.

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