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Beat It! 2000 Episode 7

With an overt political angle this episode of Beat It! looked at the reasons why the successes of the Khayelitsha PMTCT programme were not being rolled out nationally. The results of not rolling out the PMTCT programme was then driven home in an emotional Support Group discussion in which mothers who have lost their babies through mother-to-child-transmission shared their experiences.

Paddy Nhlapo:Masinamkele futhi emakhaya {IsiZulu} [We welcome you at home] in this edition of Beat it! – the programme for all of us affected by HIV/AIDS. Hello Mercy!

Mercy Makhalemele:Dumela Paddy, kedumedisa leluna kholapheng. {Sesotho} [I’m greeting the viewers at home] You know Paddy, previously we went to Khayelitsha and checked out the mother-to-child-transmission prevention programme. When we met these mothers, and saw the difference that this prevention programme has made, it is clear that it needs to be rolled out nationally.

Paddy Nhlapo:This week we investigate what has been holding up the introduction of mother-to-child-transmission prevention programme nationally, what the controversies around it are, and what positive action is being taken.

Profile - Chris van Heerden

Chris van Heerden:I was sitting in the doctor’s waiting room with about 20 other patients. Doctor had two rooms where he examines patients; came out of the one, saw me in the waiting room and said: “Mr van Heerden, got your results, you’re HIV positive. Next.” In ’97 the trials came out, it’s AZT a combination of two other drugs, it cost R4500 a month, we were given it free of charge for a two year trial. Before I started the trial my CD4 count was 124. I started on the trial, it boosts me up to 525, it’s made me stronger. It’s not a cure, but it’s made me stronger. Through my psoriasis I had no more hair on my body. I had no finger nails or toe nails, and as soon as I started the course, all those signs disappeared, arthritis pains, hair started to grow on my body again, my nails started to grow again, so yes, it worked for me. So I got involved. The person I’m involved with is not HIV positive, he’s negative, and things just happened and materialised. So for the last two years, I’ve been employed by ATTICC, because in the old days the government used to make those posters, of people looking like skeletons, saying: “AIDS kills.” So government said: “Let’s stop making those posters. Let’s rather employ 12 people living with HIV to go out and be walking posters.” So that is what I am, I’m a walking poster, putting a face to the epidemic.

Special Report - MTCT Prevention Update

Adeline Mangcu:The only person who I am proud to say, or very ashamed to say, who got infected through me, is my baby who died in 1995. Think about this: 160 babies are born HIV positive every day, and the government is saying no to AZT.

Paddy Nhlapo:Since the beginning of 1999, the Western Cape has been running a successful mother-to-child prevention programme in Khayelitsha. HIV positive women are given a short course of antiretroviral AZT drug, reducing the transmission of the virus to the baby by about 50%. In Khayelitsha, where one in five women tests positive, this means that about 250 babies lives have been saved since the introduction of the programme. Doctors who are working in Khayelitsha have argued for the expansion of the programme on a national scale, but the National Department of Health is still holding back.

Glenda Grey (Chris Hani Baragwanath Hospital):To give Nevirapine, not only is it the right thing to do, is that you save lots and lots of money. So the government’s decision to withhold this life-saving intervention for children makes no coherent, rational sense at all.

Jackie Schoeman (Cotlands Baby Sanctuary, Johannesburg):We’ve had five deaths in the last week and it’s an extremely painful death for the children, although we offer pain control. But they become very thin so it’s painful if you touch them, they have oral thrush and chronic diarrhoea so they get dehydrated, and it’s normally quite a long, drawn-out process.

Zackie Achmat:TAC will commence legal proceedings to compel the South African government to act on the findings presented over three weeks ago, and reveal publicly, at this conference, on the efficacy of Nevirapine and AZT in the reduction of mother-to-child-transmission.

Dr Eric Goemaere (Head of Mission MSF: South Africa):What we learnt in Durban is that Nevirapine works, definitely works, and is safe; same trial confirms what Uganda told us.

Dr Hermann Reuter:As you know, Nevirapine costs twenty rand, that’s two tablets that I will give to you, which you take as you go into labour, but then you’ve also got to consider the formula milk, which can cost up to six hundred rand.

Anneke Meerkotter:What the Treatment Action Campaign is trying to do is we’re trying to campaign for affordable treatment. With regard to mother-to-child-transmission, it means that we want the government to provide AZT or Nevirapine to all pregnant women.

Dr Hermann Reuter:I want to ask her how she, from the Ministry of Health, is going to lead this partnership to implement a national programme in mother-to-child-transmission. Is she going to question science, or is she going to implement the programme?

Dr Manto Tshabalala-Msimang (Minister of Health):We are waiting for the scientists, the researchers, to come and give us a written report so that we can start it together. But also, WHO is saying to us: “There are issues of resistance”. So, hamba kahle {IsiZulu} [Go well] don’t rush, we are going to call yet another meeting so we can fully understand what this all means.

Zackie Achmat:Three out of seventeen women showed that they developed a resistant virus. That didn’t mean they passed the virus on to their child, it just meant that they had a resistant virus to Nevirapine. On the other hand, there are very many women who will save themselves and their children, a lot of pain, a lot of suffering, a tremendous amount of emotional stress, if they stop their baby from having HIV.

Dr Nono Simela (Chief Director HIV/AIDS):Even the efficacy studies on the SAINT are enough to convince. So, what is the bigger picture? The bigger picture is, put into place the right programme, the full package; don’t go in bits and pieces.

Zackie Achmat:For anyone in government to suggest that the resistance profile is a reason not to implement, we have a simple answer for them: “If that’s the case, if you really believe that, then implement short course AZT, until such time that you are satisfied, and the MCC is satisfied, and registers Nevirapine.”

Woman:I heard from TV that it’s not yet registered with the Medical Controls Council, so how do we use it?

Dr Hermann Reuter:Nevirapine in South Africa has been registered since 1997 for use in adults. Nevirapine has been registered in South Africa since January 2000 for use in children; in other countries, earlier. The only thing that Nevirapine, at the moment, isn’t registered for is for use to mother-to-child-transmission. However, as a doctor I don’t have a problem with it, because everyday I prescribe medicines that we call ‘offshelf’. For instance, people with HIV often get tingling in the feet, and we prescribe tegretol carbamazepine, which is an anti-epileptic medicine. It’s not registered to use for the tingling of the feet but we prescribe it anyway, because we know it works.

Anneke Meerkotter:We have met with the current Minister of Health Dr Manto Tshabalala-Msimang and, at some point last year, she gave us an indication that once the new studies about Nevirapine is out, which is a much cheaper option, then she would reconsider introducing mother-to-child-transmission. And the studies came out earlier this year, saying that Nevirapine, does significantly reduce the risk of transmission, and we were under the impression that once the Minister finds this out they would immediately start implementing it, which hasn’t happened. That is why the Treatment Action Campaign has decided to take the government to court. And we know that this is a very serious thing to do.

Dr Manto Tshabalala-Msimang (Minister of Health):And in any case, we don’t believe that the only way to prevent mother-to-child-transmission is by using antiretrovirals.

Zackie Achmat:The first reason that the government’s dragging its feet is that it’s found itself in an ideological muddle of whether HIV causes AIDS, and that is completely unacceptable.

Dr Manto Tshabalala-Msimang (Minister of Health):You do not have enough resources to buy drugs. We can’t just be jumping on the bandwagon because we’ve heard that somewhere Nevirapine was being administered.

Zackie Achmat:The second reason government is dragging its feet is because of its economic policy. Its economic strategy is one in which they are spending more money on repaying the old Apartheid debt, than they’re spending on healthcare reform and that, most important of all, that the defense budget has increased by more than the rate of inflation, whereas the health budget has decreased, per capita, by the inflation rate and by the population growth rate. So, we’re in a situation where our government is spending more money on defense and spending more money on debt reduction than on the healthcare of its people in a situation where we have a tremendous healthcare crisis.

Paddy Nhlapo:You’re watching Beat It! – the guide for better living for all of us affected by HIV and AIDS.

Mercy Makhalemele:We all have so much to learn about HIV. One of the worst experiences is having a child with HIV. So just how do we cope with our positive children? That’s the subject in this week’s Support Group.

Support group

Adeline Mangcu:Those of us who have been through the experience of having children living with HIV/AIDS, I would like us to just share a bit of what happened. I know you lost a baby, Mercy lost a baby. Okay, whose baby died first mine, 1995, yours?

Busisiwe Maqungo:Mna njengokuba ndandisenditshilo into yoba ndandi so sure ukuba umntanam akakho positive nam phofu andikho positive. Ndothuka ke ndisiva uba u-positive then ukusukela ngoko wagula emveni kufanyanisiwe u-positive, wayesoloko equqa esibhedlele. Infact yileveki wayezakusweleka ngayo because into eyenzekayo, wayesele egula kakhulu. Intloko yakhe yayise indumbile, wayenezilonda kwaqala kwaphuma izilonda into ebengenayo esaphila. Wadumbha intloko, zange ndayiva intloko idumbha, ndandiqala ukuyibona kuye. Yafika i-ambulance yamthatha wemka, wafika esibhedlele wa admitwa. I left esibhedlele something past eigth. Ja, ndalala kokwabo Friday and the following day Saturday ndavuka ndaya esibhendlele ndaya kumbona, ndafika etshintshiwe kwi-ward waye kuyo ekwenye i-ward, ndaxelelwa ukuba ukule-ward. Xa ndifika, ndafika efakwe kwi-machines endingazaziyo, andizazi ke izinto zasesibhedlele kukho into afakwe apha kumbhontsi, imane ilayita iveza amanani, andiwazi amanani wantoni qha amane evela aphinde anyuke ehle. Ndava ukuba nokupefumula akasapefumli right. Yiyona into yayi sad gqithi apha ebomoni bam. But ngalomini, I couldn’t even stay for thirty minutes. Waye ngumbono nje onganyamezelekiyo, ndahamba ndaphindela endlini. Ndithe sendisendlini ndaqonda ‘no’ ndiberongo, ngendingakhange ndimshiye umntanam kwimeko enjeyana. Ndaphinda ndafuna ubuyela esibhedlele but andakwazi ukuphindela esibhedlele. The following day ndavuka, ndaya esibhedlele kwakhona Sunday ndahamba late ngalemini, something to nine. Xa ndifika, ndafika kwakhona ephindwe watshintshwa kula-ward. Infact ndafika engekho kulabhedi bendimshiye kuyo the previous day. Ndabuza kwi-nurse eyayilapho, uphi umntanam bendimshiye elapha and akekho and nayizolo bendizile ndafika etshintshiwe kwi-ward ebekuyo, ingaba utshintshelwe phi ngoku? Yathi mandihambe ndiye ku-sister ndiyobuza ku-sister. Then I knew something yenzekile. Ndafika kule-office, wandixelela ukuba, ok ndamjamela kakubi futhi, wathi kutheni undijamela, uyayazi lento ndizakuxelela yona, ndathi andiyazi, wathi umntwana uswelekile. Hayi ke, inoba ndaphambana andizazi but imeko endandikuyo yayingeyo yomntu ophile kakuhle apha entloko. Then wathi bazayondibonisa umntanam e-mortuary. Ndathathwa yi-nurse ndaya kwi-mortuary bavula ke kulandawo wayefakwe kuyo. Bathe uvula kwakhe ndamtsibela ndamthatha. Yamxutha lenesi, yathi mandingamthathi, andifanelanga ukuba ndimthathe. Ndathi okay ke, uba andizumthatha ke, mandimphuze kanintsinintsi futhi. Ndabe ndingafuni ukuphuma apha e-mortuary. {IsiXhosa} [I was very angry, mostly to myself. If I knew that I was positive, I wouldn’t even conceive. But I did because I didn’t know, that’s why I’m blaming myself. As I’ve said before; I was so sure my child wouldn’t be HIV positive. I was also sure I’m not HIV positive. I was shocked to hear she was positive. Ever since she started getting ill after her diagnosis, she was always in hospital. In fact, the week that she died, she was severely ill. Her head was swollen, with sores, something she never had before. Her head swelled up. I’d never heard of a head swelling up. The ambulance came and took her. At the hospital she was admitted. I left the hospital after eight pm. I slept at her father’s home and went to the hospital the next day. When I went to see her, she had been transferred to another ward. When I got there, she was connected to some machines. I didn’t know those machines because I know nothing about hospitals. There was something attached to her toe. The machine was lighting up with numbers. I didn’t know what those numbers were for. They were going high and then low. I could hear she was having difficulty breathing. That was the saddest part in my entire life; that day … never. I couldn’t even stay for 30 minutes. She was just an unbearable sight. I left. But when I got home, I felt I was wrong. I shouldn’t have left my child in that condition. And now I wanted to go back to the hospital, but I couldn’t. The following day, Sunday, I went back to the hospital. I didn’t go early that day. I went after 9 am. When I got there, she had been moved again. In fact, she wasn’t in the bed I’d left her in. I asked the nurse: “Where’s my baby? I left her here, and she’s not here. Even yesterday when I was here, she was moved. Where has she been moved to?” Then she said I must ask the sister. I went to find out. Then I knew something had happened. I went to the office and then she told me. I stared at her. In fact, I glared at her. She asked me: “Why are you glaring at me? Do you know what I’m about to say?” I said: “No”. She said, “It’s the way you’re glaring at me.” She said: “The baby has died.” I must have gone mad. I don’t know. It’s because my condition was that of someone who’s lost her mind. Then they said they’ll take me to the mortuary to see the baby. A nurse and someone from the mortuary took me through. They opened the shelf where she was lain. When they opened it, I jumped and grabbed her. I grabbed her and picked her up. The nurse pulled her out of my arms. She said I mustn’t pick her up, I’m not allowed to do so. “Okay”, I said, “If I can’t pick her up, let me kiss her.” I kissed her, many times. I refused to leave the mortuary.]

Mercy Makhalemele:My daughter’s name was Nkosikona. Nkosikona means ‘God is there’. And when she died she was two and a half years old. Most of her life she spent in and out of the hospital, for about, I suppose, she started going to hospitals when she was about five months, very regularly, until the last two months before her death, when we were all thinking that she was so healthy and she was jumping, playing and doing all kinds of things. So, she died when she was two and half years old, you know. I don’t know, these tears now, I just want to say, they are tears … I no longer cry for my child, you know. I know she is resting in peace, and I know that a lot of people contributed to her death, but I know that today there are many other kids that are dying unnecessarily and that really destroys my heart.

Busisiwe Maqungo:Yabona ke into ebisenzeka xa ndiyobona umntanam ever since waqalisa ulala esibhedlele, ndandifika ukuseni, ndandingathi ndiyaphangela. Ndandifika ekuseni ngo-seven ndandingahambi u-five engabethanga, ndandisenza lonto mihla le xa ndiyobona umntanam. Njeng’ba wayelala phayana almost everyday esibhedlele, ndandithwele lomthwalo nam wofika ekuseni, ukuba ndi-late ndifike ngo-nine, but ngalomini zange I couldn’t even stay for thirty minutes. {IsiXhosa} [Every since she was hospitalized, I used to get there very early. It was like going to work. I would be there in the morning. I’d be there at seven am and leave at five pm. Just like going to work. It was my daily routine, ever since she was hospitalized. I had that daily burden, of being there early in the morning. If I was late I’d be there by nine, but on that day, I couldn’t stay 30 minutes.]

Dr Hermann Reuter:Mothers that have children with HIV, they feel the child got it from me because you think: “Somehow, I’m responsible.” But I think you have to understand that treating children isn’t easy, because the child is much smaller and the body gets affected by the diseases much quicker.

Adeline Mangcu:I actually don’t know what she actually died from; of course it says that she died of pneumonia and stuff, but I know that she had no pneumonia on the day before she died. Now I get big words like, drug resistance, but she already finished the TB treatment so why would she be MDR and stuff? Absurd.

Dr Hermann Reuter:The baby gets sick with one thing, pneumonia, and gets admitted. A second problem starts, the next problem starts, and one problem leads to the other. As the diarrhoea is weakening the child, it’s easier for a skin infection to come in. If the skin infection comes in, you use antibiotics, but there might also be another infection which gets resistant to those antibiotics. So because there are so many mixed diseases, all coming at the same time, it’s difficult for the doctors to treat the child, and it often takes much longer to treat the child.

Faghmeda Miller:You feel that if you have lost out on something like motherhood, but also when you think of what these other ladies have been through, with their children, you think it’s best rather not to have a child. Like, when my husband died after being married for six months, I felt that: “Why wasn’t I at least pregnant?” But after discovering that I was HIV positive I actually felt relieved, because for me I was, like the doctor have said, who would look after the child when you have died. So, for me, it’s like, you want to have a child but there are a lot of complications as well. So it’s best rather, I mean I feel, not to have a child. Although today there are lots of medications that can prevent the infection, but for myself, how do you know the child is going to be born negative?

Dr Hermann Reuter:Obviously we know that if you would give treatment with antiretrovirals to these children, then all of them would do well, or better. In England, in America, of the mothers that have got HIV, only 2% of their children get born with HIV. So, for instance, Faghmeda who is on a medical trial, where you’re receiving full antiretroviral medication, your viral load has come down to such levels, below 50, so we can’t measure it anymore. This basically makes it impossible for the virus to spread to the baby. So if you wanted, you could have a child with a confidence that it would be born without HIV. However, the price of those antiretrovirals prohibits us from doing it on a large-scale. However, with the regimen that we’re proposing at the moment of just using AZT during the last month, or a single tablet of nevirapine, the price is very cheap. The sad thing is that when the government doesn’t want to make this programme available because of the cost, they are ignoring the fact of the money that is now being spent to treat the patients, the babies in the hospitals, who’ve now got HIV.

Red Ribbon and Red Noose Awards

Mercy Makhalemele:And now is time for the Red Noose and the Red Ribbon again. The Red Noose is given to someone or group that has disregarded the rights of people living with HIV/AIDS. So tell us Paddy, who are we hanging this week?

Paddy Nhlapo:Preventing the spread of HIV from a mother to a child is a basic right, so this week I think we should give the Noose to all those who are holding the introduction of mother-to-child-transmission prevention programme using either AZT or Nevirapine. Nevirapine is approved in mother-to-child-transmission prevention programme in many countries. I think it’s registration should be rushed through immediately. So if you are a bureaucrat sitting at your desk, protected by a good salary, medical aid and other benefits and are involved in denying the right to life to the thousands of kids born with HIV who could otherwise be saved, then you really deserve the Noose. Booo

Mercy Makhalemele:And the Red Ribbon this week goes to someone or group who deserve recognition for their services to the positive communities and our supporters. This week the Red Ribbon goes to all those non governmental organisations working with women and children to protect and assist those most vulnerable to HIV infection. This week we recognize the work of Wola Nani, Cotlands and Nazareth House.

Paddy Nhlapo:And that is our programme this week, hope you enjoyed watching and remember we really value your comments and suggestions so please contact us at the numbers given below.

Mercy Makhalemele:See you next week Tuesday at 6:05 or catch the repeat broadcast on Sunday at 12:30.

Paddy Nhlapo:And remember together we can Beat It!

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