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Beat It! 2002 Episode 3

In this episode the Beat It! Support Group discusses mother-to-child-transmission of HIV. Dr Nombulelo gives sound advice on food and nutritional supplements. In the Special Report we see how nurses are making the government’s PMTCT programme work in rural KwaZulu Natal.

Vuyani Jacobs: Hello sanibonani {IsiZulu} [good day], I’m Vuyani Jacobs.

Nombeko Mpongo: Molweni, dumelang, Kgotsong, [Hello] I’m Nombeko Mpongo.

Vuyani Jacobs: Welcome to Beat It! – your guide to better living with HIV/AIDS. Khule nkqubo sijonga ukukhuseleka losana kwetshologwane egawulayo ephuma kunina. {IsiXhosa} That’s PMTCT in English.

Nombeko Mpongo: Did you know at least 70 000 babies are being born with HIV each and every year in South Africa and that most of those infections are preventable.

Vuyani Jacobs: It’s been known since the nineties, that antiretrovirals can prevent the transmission of HIV from a mother to a child.

Nombeko Mpongo: In our Special Report we look at how government’s PMTCT pilot sites are doing.

Vuyani Jacobs: But right now it is time to join the Beat It! Support Group where we will be sharing experiences of mother-to-child-transmission of HIV.

Bongiwe Mkhutyukelwa - PMTCT
TAC Press Conference – 20 August 2001

Thembeka Majali: We are calling on the South African government to implement or to rollout the national mother-to-child-transmission prevention programme.

Bongiwe Mkhutyukelwa: Providing the antiretrovirals to the children will reduce the rate of transmission and could also save many of thousands of lives.

Beat It! Support Group

Bongiwe Mkhutyukelwa: I heard about my status in 1999 when I went for my first booking at Site B clinic. There were counsellors who were doing the education about the HIV and AIDS and about the MTCT programme. So they asked those who are interested on having an HIV test to go and sign a consent form. I went for an HIV test and the results came out positive. I then have to wait for the confirmatory results again and they came out positive. So age the age of thirty six weeks I had to be given the AZT tablet. I had to take three tablets in the morning and three in the afternoon. Up until I went to the labour and I was given three tablets every three hours until I gave birth. During my counselling session my counsellor told me that I mustn’t breast feed in this programme because by breastfeeding I can also pass the virus to the child. So I made it a point that I won’t breastfeed. And then after giving birth my child was given the Bactrim syrup after three weeks. I sent her for testing at the age of nine months; she tested negative. And again at eighteen months she tested negative again. So I am very proud that my child was tested negative. I feel therefore that this programme is very effective because it saved the life of my child. I therefore want it to be available to all the mothers who tested positive for HIV because I believe it is very effective. It saved the life of my child.

Nomandla Yako: Hello guys, this is Thami my son, he is three years old and he is HIV positive also. You know how I did find out that he is HIV positive? When he was seven months old, again it was September he was very, very sick. He was loosing weight and he had, the stomach was swollen, he was not sleeping at night; he was just crying the whole night and the whole day. So they told me those symptoms and I just said: “Oh I have to agree because he has many symptoms, maybe he has this virus” and I wanted to know what is the cause of this sicknesses, you know. And they took blood from him, the results came back, the doctors called me, the baby was HIV positive they told me like that.

Vuyani Jacobs: Tell me something was it your choice not to be part of the programme or didn’t you know about this HIV thing or, I mean educated about HIV when you were pregnant or what actually happened in your case?

Nomandla Yako: You know Vuyani, I was booked at St Monica’s, you know, I was staying at Khayelitsha actually, but you know because I needed some care you know I had to book at St Monica’s. So, at St Monica’s there was no programme of MTCT so they just tested us. They took the two blood test, for the blood group and the STDs, so I thought maybe they had tested HIV also, but they didn’t mention anything about HIV. So, I didn’t know and um. You know I don’t blame myself for not going to Khayelitsha because I didn’t know. If our government had implemented the programme nationally, I could go for a test and protect my son from the HIV. So I didn’t know and I’m not blaming myself on that.

Sandra Merino: Vir my wat ek uitgevind het ek is ‘pregnant’, daar was nie so iets gewees soos ‘mother-to-child-transmission’ nie. Daar was niks bloed toetse gedoen vir ‘HIV’, dit was net gewees vir hoë bloed en STDs, dit was niks anders wat eers vir ‘HIV concern’ nie. En toe ek geboorte gee aan my seun toe sou ek uitvind ek is ‘HIV positive’ en onmiddelik het ek gedink aan my kind se toestand, of hy ‘HIV postive’ is of wat? ‘But eventually’ hy was nie ‘HIV positive’ nie, hy is ‘HIV negative.’ En ek was nie op enige ‘mother-to-child-transmission’ gewees nie. Maar ek dink dat daar so iets moet wees in elke ‘clinic’ sodat die moeders kan getoets word vir ‘HIV’ en dat hulle kan ‘prevent’ van julle kinders met ‘HIV positive’ is. So ek dink, as ‘n moeder moet sy ‘demand’ vir ‘treatment’ vir ‘mother-to-child-transmission’. {Afrikaans} [When I discovered that I was pregnant, there was no such thing as PMTCT. There were no blood tests for HIV; only for high blood pressure and STDs. There was nothing concerning HIV. When I gave birth to my son, I discovered that I was HIV positive; I thought immediately of my child’s condition; whether he is HIV positive or not. But he wasn’t HIV positive; he was negative. And I wasn’t on any mother-to-child-transmission prevention, but I think it should be available at every clinic so that mothers can be tested for HIV and prevent their children from becoming HIV positive. So, as a mother one must demand treatment to prevent mother-to-child-transmission.]

Nomandla Yako: Into bendinga thanda ukuthi bonke omama mabayazi kukuba ezibhedlele i-test ongaxelelwayo ukuthwa mizitestwe zezi test izibini. Kutestwa i-blood group yanko nako kunye neSTD’s. Zizifo ezisulelanayo ngokulalana, iHIV yona iba yile lantukha tube isithantu yona uye uyixelelwe. Funeka usayine iform phantsi. So if utsalwe lamagazi omayitwo umama makanga cingi ukuthi neHIV itestiwe ayitestwanga yona. {IsiXhosa} [You know … [What I want all mothers to know, is that in hospitals, your permission is not asked for these two tests. You are tested for your blood group and for STDs. For HIV there is a third tube. Your permission is asked and you must sign a form. If you went through the two tests, the mother must not think she’s been tested for HIV.]

Faghmeda Miller: Bongi, ek wil net graag weet toe jy die pille gewat het vir …toe jy swanger gewees het met die baba, was jy nie bang vir ‘side-effects’ of dat jy jou baba miskien kon verloor nie? {Afrikaans} [Bongi (Bongiwe), when you were taking the pills during your pregnancy, weren’t you afraid of side effects or that you may lose your baby?]

Bongiwe Mkhutyukelwa: Andizange ndi experience any serious side-effects. Its only just ukuba ne headace ndibe dizzy, ndi ndinwe but azikho iside-effects zaba serious ngalotlobo. I was prepared to do whatever it takes as long idilishana ukusey’va ubomi bomtanami. And I’m so grateful ukuba umtanam wa end apha esinda. {IsiXhosa} [I never experienced any serious side-effects. It’s just that I had headaches, dizziness and tiredness. But no side-effects were that serious. And I was prepared to do what ever it takes as long as it saves my child’s life.] And I am so grateful because my child ended up being saved. And I think this programme is so effective and everyone says it is effective and can save lives.

Busisiwe Maqungo: The MTCT part in HIV is the most sensitive and touching one to me because I happened to lost a child to MTCT and when I know that I shouldn’t have lost a child to MTCT my child could have been saved; something should have been done.

Corné Fourie: These regimens that they got on AZT and Nevirapine, they say they can cut the infection rates by half, but don’t you people think that we can do more in cutting the infection rate from mother-to-child to less than one percent or even zero percent?

Vuyani Jacobs: By using a combination of antiretrovirals that can actually reduce to at least one percent, but then due to cost situation, especially in our country and in the third world, it is actually widely used to use Nevirapine for cost reason. But we can do better because we know that by using antiretrovirals triple therapy makes sure that the virus becomes undetectable in the persons body.

Anthony Fernandes: Where does the men stand in this, you know? What role do they play, how can they help, you know? It can’t just be a mother or a women’s kind of thing, men also has to do something about this?

Busisiwe Maqungo: The fathers should take the full responsibility of, especially by encouraging their partners to go for the test when they. Don’t just think: “No, we look healthy, we might not be HIV, so we are going to give, we are going to have this wonderful beautiful child who’s HIV free.” It happened to me.

Prudence Mabele: I would like to encourage women and men to stand together and go to the HIV clinic or to any centre and test; in the hospitals or in the clinics and test their HIV status. While they are still planning to have that child.

Mathew Damane: Even for the men, it is very important for them to take the responsibility for their women, when they go for the test to encourage them to go for the test. It must not be for the women the responsibility; the man must also give the support, to encourage them to go for the test and even when the women give birth to the positive child they must both look after the child.

Prudence Mabele: Men are fathers and men are uncles, men are boyfriends, so therefore they need to also take a stand and help the women who are mothers. This is where I see the fathers coming into the picture, by truly supporting the whole activity. Taking off work; taking the children to the doctors.

Busisiwe Maqungo: Okay, nangona kengoku urhulumeni ezama kancinci ukufakhelela eziMTCT pilot sites elizweni. Ndiyancinga ukuba azikanele because zisembalwa kakhule and abatwana abanintsi basasene engozini yokusweleka yigculaza ungathi kum, izawuthi isebenze kahle lento yeyo ibeko kuzwelonke, ngento ukuba iMTCT programms zibekona and bona abomama bayaziswe into yokuba ikhona into enjengalena ngelongama basahkulelwe banikwe ichance yokuba mabatestwe ibengabe bayafuna but ndicinga funny ukuba wonke umama osezinthlondeni ongasaziyo isistatus sakhe uyakhuvuma ukuba atestwe xa angazazi ukuba umendawoni. Just for the sake yomntana wakhe {IsiXhosa} [although the government is trying little by little to set up these MTCT pilot sites in the country, I think they are not enough, because there are still quite a few and many children are at risk of dying from AIDS. For me, for this to work, it should happen country-wide; that there are MTCT programmes and all mothers be informed that there is something like this, while they are pregnant and be given a chance to test if they want to. But I think every sensible mother, who doesn’t know her status, will give permission for the test, just for the sake of her child].

Nombeko Mpongo: This is Beat It! uyazi [you know] Vuyani, we can really wipe out mother-to-child-transmission of HIV if we have voluntary counselling and testing and Nevirapine at all our clinics and hospitals.

Vuyani Jacobs: Right now it is time to go to Gugulethu where Dr Nombulelo has another page from her doctor’s notebook for us. This week: the importance of nutrition in the treatment of HIV.

Dr Nombulelo Madala’s consulting room

Dr Nombulelo Madala: Molweni bakwakhona ngu Dr Nombulelo iCommunity HIV/AIDS doctor yenu [Hi there viewers at home this is Doctor Nombulelo, your community HIV/AIDS doctor]. Thanks for being with us again. Many times patients ask me: “Doctor njengoba ndine HIV nje nditye njani, nditye ntoni because I understand iHIV iyenza umntu aloze iweight. Andifuni mna ukuluza iweight. Ewe kunjalo? [as I am HIV positive how and what must I eat?” Because I understand HIV causes a person to lose weight and I don’t want to lose weight”] HIV/AIDS will eventually cause weight loss, but the weight loss in HIV is not fat weight loss it’s loss of muscle bulk. So umntu akhabityi ukuba kuqcine amaqcatha wakhe zizihlunu zakhe ezihluthekayo. [So a person doesn’t get thin because the fat is going away, but it is the muscles.] Now some people have got body fat, therefore they will take longer to look thin whereas it could happen that the muscles are getting thinner already. As important as it is to eat healthy balanced meals when you are HIV positive it is more important to eat at all. We advise our patients to make sure that they eat because they have to help the body to keep strong and to help their muscles to keep stronger longer. Itya lento ikoyo endlini nokuba yintoni na [Eat whatever is available at home], if you cannot afford healthy fresh food. Just as long as you make sure you eat your three meals per day and maybe some snacks in between. Noting that not many people can keep to a balanced diet all the time, we supply vitamins to all our HIV positive patients in order to supplement. People can buy vitamins from a chemist if they want but all our clinics supply them to HIV positive patients. It’s important that people know that even if you are getting these vitamin supplements from your clinic or buying them from a chemist you must still eat food because they do not take the place of food. That is all I have to say about the basics of nutrition. Kukhangako kwanamtlanje. [That is all for today.] Stay healthy until we meet again next week. Bye bye. {IsiXhosa}

Nombeko Mpongo: You’re back with Beat It! Welcome.

Vuyani Jacobs: All the medicine in the world won’t do you any good if you don’t eat a balanced meal everyday. It doesn’t have to be expensive; veg, pap and nyama is a balanced meal. The important thing is if you are HIV positive you must eat regularly; don’t skip meals. Hey majita masiyekhe ukuphuza utywala, ukutshaya akhulunganga konke {IsiXhosa} [friends stop drinking alcohol and smoking is not good at all].

Nombeko Mpongo: In this week’s Special Report we visit Tugela Ferry in KZN (KwaZulu Natal) where nurses, doctors and the community are working together to make PMTCT work.

Vuyani Jacobs: The Constitutional Court, the highest court in South Africa has ruled that you have the right to prevent passing on HIV to your child.

Special Report - PMTCT
Constitutional Court, 5 July 2002

Court orderly: I call the case of the Minister of Health and others and the Treatment Action Campaign and others for judgement.

Arthur Chaskalson (Judge-President of the Constitutional Court): The steps that have to be taken to comply with the order that we make should be taken without delay. We make the following order: It is declared that:

Sections 27(1) and (2) of the Constitution require the government to devise and implement within its available resources a comprehensive and coordinated programme to realise progressively the rights of pregnant women and their new born children to have access to health services to combat mother-to-child-transmission of HIV. I hand in the judgement.

Tugela Ferry, KwaZulu Natal

Fareed Abdullah (Director of HIV/AIDS, Western Cape): The administration of a drug like Nevirapine is quite simple and it can be done really in any simple basic maternity facility that has got a nurse and is able, you know, to store the drugs; some basic infrastructure. But it is a lot more difficult in rural areas, when it comes to the other parts of the programme. Mainly if you want to give a woman a drug you have to first, be able to test her.

Mrs Ndlela (HIV counsellor): Ngingu Mrs Ndlela umeluleki weHIV an AIDS lana ekhaya. Kulelihlelo lakha mama nomtana, umama angahlola igazi mase ahlolile igazi usengatywelwa imuphumelo yakhe abaluleki. {IsiZulu} [I’m Mrs Ndlela, and HIV counsellor here. In this programme (mother-to-child), the mother can have a blood test. After the test she will get the result from the counsellors.]

Doreen Lindiwe Zulu (Senior Nurse, Church of Scotland Hospital): Before they undergo individual pre-test counselling; the councillor is to see them as a group. So she needs to sort of tell them that this is the programme that we started in June 2001 and it is about issuing of the Nevirapine tablet to the mothers. So, this Nevirapine tablet is the tablet which has been used, which is just used to help decrease the viral load from the mother to the baby. So they have just to understand that this is not going to help them as mothers but it is going to help the baby not to be infected.

Mrs Ndlela: Angazi ke njengoba sesiqubekha nehlelo lethu wena ungathanda yini na ukuhlola igazi noma cha. {IsiZulu} [I don’t know if you’d like a blood test as we go on with our programme.]

Patient: Yebo ngiyavuma. {IsiZulu} [Yes, I agree.]

Doreen Lindiwe Zulu: After this group counselling they’re going to come in as individuals; where she can talk now exactly to get the information; how much this women knows as an individual, because it might be hard here (in the group counselling session) to say “This is what I don’t understand.”

Mrs Ndlela: Yebo ngiyazi. Ngingathanda ukhiti ungisayinele lana kuze sikwazi ukuthi siqubekhe ukuhlola igazi. Siyabonga, njengoba use usayinile usuyavuma ukuthi wena usungahlola igazi. {IsiZulu} [I would like you to please sign here for me, so we can proceed with the blood test. Thank you. Now that you have signed, you’ve given permission for your blood to be tested.]

Fareed Abdullah: I think the rural areas are always going to be lagging behind, you know that’s the, the resources are fewer there, the personnel are fewer there and I think that more resources should be put into rural areas and I would concentrate our resources on employing more nurses. I think there is a critical intervention. Our antenatal services generally are quite good compared to all the other services. And once you have the nurses; you know our nurses in this country are very good. You don’t need doctors to do this programme our nurses do it very well, but we also can’t pretend that we don’t need additional resources for nurses.

Mrs Ndlela: Iphumelo yako sibuyile, igciwane alikho {IsiZulu} [The results are back; there is no virus.]

Patient: Nami ngiyabonga. Manginga thola iqiniso ungahlala uthi ngihleli mina ngoba ngizazi anginalo, nkathi ngaphakhathi awusekho. Ngiyabonga bangenalo. Yebo. {IsiZulu} [I’m also grateful; I wanted the truth because you can stay thinking you don’t have the virus, while inside you are finished. I’m grateful I don’t have it.]

Doreen Lindiwe Zulu: Sebakhutshelile iphumelo, bakhu tshela ngonke. {IsiZulu} [Have you been given the results and told everything?]

Second patient: Yebo sister bangitshelile ngonke. {IsiZulu} [Yes, sister, they told me everything.]

Doreen Lindiwe Zulu: Bathe yini? {IsiZulu} [What do they say?]

Second patient: Bathi igciwane senginalo. {IsiZulu} [They say I have the virus.]

Doreen Lindiwe Zulu: Bakuchazelile ukuthi njengoba utholakale unegciwane egazini kuzoyenzakalani, batheni? {IsiZulu} [Did they tell you what is going to happen now that you have the virus?]

Second patient: Abathe njengoba umama angilethe lana, uthe umama ungiletha lana uzongipha ipilisi njengoba sengi over seven months. {IsiZulu} [The women that brought me here said she would give me a tablet because I’m over seven months.]

Doreen Lindiwe Zulu: With this programme, giving of Nevirapine, it is just a set dose which is given to the mothers at 28 weeks. At 28 weeks she takes the tablet home, so she is not going to drink it then, she only takes it when she is in labour.

Doreen Lindiwe Zulu: Bathe ukhetha ukwezanjani umtwana uzomucelisa uzomunikheza ubisi olusemathinini? {IsiZulu} [Did they tell you to choose between breast feeding and formula feeding?]

Second patient: Ngibona ukuthi kuncono ngimuphe okusemathinini, ngoba angiyena umntu ojwayele nangoko emveni kubanobisi anginalo emabeleni ngithanda ukumunikeza ulwethini. Ngizwe amadla ngingenawo. {IsiZulu} [I prefer formula feeding, because naturally I don’t have much milk in my breasts, although I don’t have the means.]

Fareed Abdullah: In rural areas where there is no clean water it’s more difficult to know what to do with breastfeeding or formula feeding, because breast feeding there is a danger of transmitting the virus to the baby and there is also the danger that women in areas where there isn’t clean water formula feed or bottle feed their children, the child could die from diarrhoea. But very importantly if the conditions are not there for bottle feeding then a woman should be advised to exclusively breastfeed.

Third patient: Ngathola ukuthi ngukhulelwe. Unurse wasitshela ukuthi kuneVCT fanele siyotesta siyo sheka igazi mawukhulelwe. Ngahamba ngafika ngangena kuVCT. Bafuza qala ukuthi uyavumelana ukuthi sikhuthathe igazi awupoqelekile. Ngavuma, emva kwalokho ngathatha igazi ngalinda imizuzwana emibalwa. Yaphuma imiphumela yami, ngathola ukuthi ngiHIV positive. Emva kwalokho sengikhulelwe, mawuna seven months uye ubuye uzosheka. Bazokunikha ipilisi lokhusiza umtwana, ngalithola mina lelo pilisi ngina seven months, ngaliphuza sengi, ngesikhathi kuqala umsikho uyaliphuza. Ngaliphuza kuqala umsikho ngatetha ngahle ingane, yangaba na nkinga. Bangi vuza ukuthi ngizoyicelisa ibele or ngizo phuzisa indemu bisi. Ngakhetha unguthi ngimicelise ibele. Ngimcelisa ibele akana nkinga akaguli, akanalitho nami angina nkinga. {IsiZulu} [I discovered I was pregnant. The nurses told us there was VCT and we should go for the blood tests when we are pregnant. I went to VCT; you are asked to give permission for a blood test; you are not forced. I agreed. Then I had the blood test and waited a few minutes. The results came back and I was HIV positive. When you are seven months pregnant, you come for a check-up; you get a tablet to help the child. I got the tablet when I was seven months pregnant. When you start going into labour, you take the tablet. I took it when I first went into labour. I gave birth safely and the child had no problem. They asked me if I was going to breast feed or formula feed. I chose to breast feed. I breast feed the baby; she has no problem. She is not sick or anything. I also have no problem.]

Doreen Lindiwe Zulu: If you are found to be positive, okay, this is what happens. There are choices, feeding choices: breast feeding or as formula. Breast feeding it is six months exclusive, breast feeding. It means you are not giving the baby bottle or any food; it’s only breast milk. But once the mother is now mix feeding; that is taking the breast milk and mixing with the artificial milk, which is where now the chances are higher for the baby to get the HIV virus, okay. And also looking if the mother has some cracked nipples; remember when you talk of cracked nipples it means maybe there can be some blood, you know that will be coming out, so, now in that instance the baby is now in a position to sort of get the virus. So the mother is to treat those cracked nipples most of the time. They are so lucky to be involved in the programme because as it is now it is the only rural area that is just administering Nevirapine for now.

Fareed Abdullah: You know I am extremely encouraged by the decision of the cabinet on the 17th of April to rollout from December onwards. But the work must start now and any sites that are ready should start gearing up and you know we can’t wait long now. Now that we’ve got a clear policy direction; the real work is in the implementation and we must really get down to it and make sure that these drugs are available throughout the country.

Nombeko Mpongo: Now it is up to all of us to make sure that each and every clinic and hospital implements PMTCT as soon as possible.

Vuyani Jacobs: Don’t take no for an answer. Ask the medical superintendent at your clinic or hospital when voluntary counselling and testing and access to Nevirapine will be available.

Nombeko Mpongo: If they say that capacity doesn’t exist then ask them what plans they have to create the capacity.

Vuyani Jacobs: And that wraps the show for this week. Please take the time to contact us on the numbers on your screen now. Your comments and opinions help to shape this programme.

Nombeko Mpongo: You can catch the repeat broadcast of this programme on Sunday at 11h30. Until then remember that together we can Beat It!

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