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Siyayinqoba Beat It! 2006 Episode 8 -

Children on ARVs

It was estimated that in 2006 about 230 000 children under the age of 15 in our country were infected with HIV. But only 10 000 of those were on antiretroviral treatment. The rest of them were in desperate need of medication to fight this disease. In this episode of Siyayinqoba Beat It! the team looked at the challenges faced in administering antiretroviral treatment to children and made the point that PMTCT programmes should be scaled up to ensure that no kids are born with HIV in South Africa to start off with.

Shalom Ncala: {Sesotho} [Hello and welcome to the Siyayinqoba Beat It! Support Group. My name is Shalom Ncala. In the Beat It! Support Group, we are all living positively with HIV. Nokhwezi works for TAC as an editor for Equal Treatment, a magazine about HIV. Each week, we get together to discuss issues that affect our lives from nutrition supplements to sex and sexuality. Siyayinqoba is your guide to better living with HIV. If you're living with HIV, or have a partner, a friend or a family member who is HIV positive, Siyayinqoba is for you! It is estimated that about 230 000 children under the age of 15 in our country are infected with HIV. But only 10 000 of these are on antiretroviral treatment. The rest of them are in desperate need of medication to fight this disease. As a result, about 50% of children with HIV/AIDS die before age two. These are shocking figures. The Siyayinqoba team visited Bulelwa Bitsha from Nyanga East, Cape Town. She's a mother of twins who are on ARVs.]

Nyanga, Cape Town – “Since they started ARVs their health has improved”

Bulelwa Bitsha: Ndiqale ukuzazi ukuba ndi-HIV positive, njen’ba bengamawele so wagula lo ungu-Aphiwe sisezilalini. Xa ndifika, wandinika imali umyeni wam ndaya kugqirha e-Bellville. Ugqirha wandixelela into yoba abantwana abondlekanga, kutheni lento ndityebile abantwana ndingabondli? Mandithengele abantwana i-Pronutro. Yandikhathaza kakhulu ke lonto leyo. Wathi ugqirha ucela uba makamteste for i-HIV. Zabuya ii-result zisithi u-positive. Ndacela ukuba bateste nalona ukuze ndiqiniseke uba u-positive na. … bamtesta nalona, kwafumaniseka into yoba nalona u-HIV positive. Bandixelela into yoba baphuma nayo kum. Ndabe ndiqond’ba ndine-worry ngoba nam bendifuna ndikhe ndiphume. Nabo bathi besawuza ke ngezinto, ndihlala nabo phantsi “into yenzekayo ke bantwana bam, umama wenu u-HIV positive nani ke ni-HIV positive. Njeng’ba nihamba e-Red Cross nje, ni-HIV positive. So kengoku ndimane ndibasa eRed Cross kwafumaniseka kengoku uba kufuneka beqale ii-ARVs, i-CD4 count yabo ihlile. Eka-Aphiwe yayisithi 198, eka-Siwaphiwe isithi 143. Oyena mntu ugulayo yayeyonanto ingaphezulu kengoku kunalomntwana. Baziqala ke ii-ARVs ngo-November. Oko wathi waqala ii-ARVs zange aphinde agule kude kube ngoku. {isiXhosa} [I found out that I’m positive when one of my twins, Aphiwe, fell sick in the Eastern Cape. I came here and my husband gave me money to go to a doctor in Bellville. The doctor complained that I was fat and my kids were malnourished. He said I should buy them Pronutro. That worried me a lot. The doctor asked for permission to test the child for HIV, I gave consent and the results came back positive. I asked then to test the other twin as well. They tested her and she was also HIV positive. The doctors told me that they got the HIV from me. This worried me because I wanted to live openly with my status. When they started raising issues, I sat down with them and told them that I’m HIV positive. And the reason they go to Red Cross Hospital is that they are also HIV positive. I took them to Red Cross regularly. Then they had to start on ARVs because their CD4 counts had dropped, Aphiwe’s was 198 and Simphiwe’s was 143. The one who was more sick was the one whose CD4 count was higher. They started on ARVs in November. Since she started on ARVs, to this day she has never got sick again.]

Aphiwe Bitsha: Njeng’ba ndithatha lamayeza, ndi-HIV positive. {isiXhosa} [I am taking this medicine because I am HIV positive.]

Bulelwa Bitsha: Lukhulu kakhulu utshintsho endilubonayo oko baqala ii-ARVs. But mnye umntu osoloko egula, akafane agule lo. Yayinkenenkene kakhulu impilo yakhe. Nam ukulaliswa kwakhe e-Red Cross ndandiqond’ba ndilindele ngantoni na, kuthiwe ubhubhile. Ngendlela ewayegula ngakhona, ndandilindele ngantoni na kodwa ndabulela nalapho e-Red Cross ubana akwazi uba atestwe ndizoyazi uba uguliswa yintoni umntwana wam. Babhala ileta ezikolweni “Dear mama siyakuthanda kakhulu … noba u-HIV positive siyakuthanda, noba sowubhubhile siyakuthanda”. Ndiqond’ba ngamanye amaxesha iyandikhathaza. Abantwana bayazelaphi lento bayithethayo? But bayamkele. {isiXhosa} [There is a big difference in their health since they started on ARVs. Only one of them often gets sick but she is fine now. When she was admitted at Red Cross, I was expecting anything, even death. That’s how sick she was. I give thanks to Red Cross for doing the test on her so that I’d know what was making her sick. They wrote a letter at school; “Dear mama, I love you so much even if you are HIV positive, we still love you. Even if you die we will always pray for you, visit your grave to pray with you”. It touched me very deeply, wondering to myself how they know what they are saying. But they have accepted.]

Support group

Shalom Ncala: {Sesotho} [After the break, we chat to Dr Nomfundo Nhlapo who works with kids on ARVs. Stay with us.]

Shalom Ncala: {Sesotho} [Welcome back to the] Siyayinqoba Support Group – the programme for everyone infected and affected by HIV. We are joined by Dr Nomfundo Nhlapo who works with children on ARVs. Welcome Dr Nomfundo. {Sesotho} [Welcome to the show. Nokhwezi I saw something very important in that insert. There are things that doctors seem to be doing without care. I’m talking about giving out a clear diagnosis of what the child is suffering from. Bulelwa took her child to the hospital and the doctor just said that these kids are malnourished and need to eat Pronutro, which is something so painful when you’re a mother and you’re being told that. Now, you’re thinking that I’m not a good enough mother. I want you to tell us more about your experience about having had your babies and how much diagnosis plays a role in terms of HIV.

Nokhwezi Hoboyi (Editor, Equal Treatment Magazine): Shalom, i-diagnosis isebenza kakhulu especially emntwaneni. Kweyam i-case ndanimncinci. ‘When I had my first child I was only 19, so that’s when I got diagnosed because I got diagnosed in ’98 during’ i-pregnancy. U-Doctor ‘never explained to me’ ukuthi i-HIV kwakuyintoni. Ndathi sendimfumene umntwana sendibelekile wagula ‘after a month’ ezelwe. Xa ndimsa es’bhedlele kwathiwa une-pneumonia. Kwathiwa mna andimombhathisi umntwana, umntwana wayezelwe ngo-January, ‘it’s not cold, it’s still hot.’ Ndamsa wa-admitwa wafakwa kwama-drip waphuma. Sathi masifika endlini wagula, ndamphindisela esibhedlele. So if oo-doctor babendichazele ukuthi ‘there is HIV’ bamteste ‘at that stage, I mean’ wayena one month. Bandichazele nokuthi ndi-stophe u-breastfeeda okanye ‘what options do I have’ mna njengomzali, ngendancedeka. In some way, ndingatsho ndithi ngabe unyana wam usaphila today. {isiXhosa} [Shalom, diagnosis plays a big role especially on the child. In my case, I was still young. When I had my first child I was only 19, that’s when I got diagnosed I was diagnosed in ’98, during pregnancy. The doctor never explained to me what HIV was. I had the baby and he got sick a month after birth. When I took him to hospital, they said he had pneumonia. They said I didn’t keep him warm. He was born in January and in January, it’s not cold, it’s still hot. He was admitted and went through drips and all that. All they said is that they suspect jaundice and pneumonia. My son was given antibiotics and he was discharged. When we got home, he got sick again and had to go back. If the doctors had explained to me that there is HIV and test him at that stage. Something could have been done, whether it’s stopping breastfeeding or what options do I have as a parent. That would have helped. In some way my boy would still be alive today.]

Shalom Ncala: Doctor I want you to assist us in letting us know what kind of training do you get as doctors concerning small children?

Dr Nomfundo Nhlapo (Enhancing Children’s HIV Outcomes, ECHO): I think the problem lies with the fact that before kids could only be diagnosed at 18 months. Because before 18 months, you would be checking the mother’s antibodies in the child. But with new developments, there is a test now available as early as six weeks, where you can diagnose the child earlier. And as you heard the statistics, most kids don’t make it to older ages because they are not diagnosed early enough.

Lihle Dlamini: Why is there such a small number of children on ARVs? Are there not enough paediatricians in our country?

Dr Nomfundo Nhlapo: I feel the reason why there is such a small number is when ARVs were first introduced, they were seen as these scary or toxic drugs. So when a person looks at a small child and they think of how these drugs are supposed to be toxic, they’re more fearful to treat a child than they would an adult. So it’s all about getting all healthcare givers confident enough that these drugs, given at the right dose to children that small, are actually beneficial. We just need to get away from being fearful of treating these kids because if you dose them correctly, then you actually achieve a lot.

Lihle Dlamini: At what age do you stop a child from taking medicine from syrup form to pills? In the insert we just saw that those twins, one of them was taking syrup and I would have thought at that age they would be able to take pills.

Dr Nomfundo Nhlapo: Another challenge is that if a child lives in an environment where there is no fridge, we have to give them the tablet form. And show them how to make a liquid solution. They must dissolve the pill in water because some medication needs to be refrigerated. So if a person doesn’t have a fridge, we have no other option but to give them tablets. But like I said, it depends on the kilograms more than the child. If they reach 20 kg’s then they can take 20 milligrams as a tablet rather than the syrup.

Nokhwezi Hoboyi: Dr Nomfundo, into endifuna ukuyiqonda ‘when was this protocol introduced’ la e-South Africa ‘because’ umntwana wam wokugqibela owatshonayo ibingu-Nokuzola, intombazana. ‘She died in 2002 in October.’ Wa-diagnozwa, kwabe kusithiwa une-pneumonia. ‘I was never given any options’ zokuthi ama-ARVs akhona or i-PCR. So ndifun’uqonda uba i-PCR le i-introduswe nini kwi-provincial hospitals? {isiXhosa} [What I would like to know is when was this protocol introduced here in South Africa because my last child to pass was a girl, Nokuzola. She died in 2002 in October. She was diagnosed with pneumonia. I was never given any options like ARVs and the PCR test. I would like to know when was the PCR test introduced in provincial hospital?]

Dr Nomfundo Nhlapo: I think it differs when it was introduced in different places. But the big problem is taking blood from the child; that is the problem in most health givers because some are not trained to take blood. Which is why there was a new method introduced to help even people in the rural areas on getting blood from children by just a prick in their foot so that they don’t have to have the technique to taking blood from a child. So mainly I think people have not been trained properly to take blood from children.

Shalom Ncala: {Sesotho} [We talk more about kids on ARVs after the break. Stay with us]

Shalom Ncala: The Siyayinqoba team paid a visit to the Harriet Shezi Paediatric Clinic in Soweto. Let’s take a look.

Soweto, Gauteng – “We are looking at fixed-dose combinations”

Dr Tammy Meyers (Harriet Shezi Children’s Clinic, Bara Hospital): The facility here at Baragwanath Hospital is one of the largest paediatric rollout sites in the country and possibly on the continent as well. In South Africa we still have a programme that’s widely rolled out but I think it’s not as effective as it could be. So we’re still having large numbers of children still being infected and coming into the services still, needing admission and becoming sick. And we still have quite a high mortality in children from the disease. In fact, with the numbers that we have on treatment, 1200, it’s a large number but it still represents a small proportion of the children that need it. We’d estimate about seven to ten thousand in just this area within Soweto and maybe the Johannesburg area are in urgent need of treatment. The South African guidelines recommend that children be tested from six weeks of age with the HIV PCR, which is a DNA test, testing the virus in the baby rather than antibody which could be passed from the mother. But most facilities still have not implemented early diagnosis of infants, again people fear dealing with blood, it’s a blood test so they have to feel equipped to take blood from small infants.

Dr Hermien Gous (Harriet Shezi Children’s Clinic, Bara Hospital): We try to really improve the ARV use for children in paediatrics and there are many challenges for them that we need to face and I’ve used many prescriptions. If we give them any solution, we must give them a syringe with any solution. The problem is that the grannies can’t always see the very fine markings on the syringe. The other thing is they get confused, if we give them two or three different bottles they get confused, which medicine belongs to which syringe? So what we’ve started doing is that we actually colour code the medicine for the paediatric patients. We use a yellow label, cut in half and we actually label the syringe. They know that they always need to pull up the dose to 6.4ml and then the yellow marking goes with the yellow bottle. For a paediatric patient we make sure we explain to make sure that they know exactly how to administer every drug, what needs to be opened, what needs to be refrigerated and it’s really complex and difficult. And since we deal with a lot of grandparents and elderly people that really take care of the children, it is really a big challenge. We are looking at fixed dose combination, which will be a great help, and we trying to move towards that even with what we’ve got. One tablet, one dose will definitely be a great benefit. I also think one daily medication would be of great help.

Support group

Shalom Ncala: Doctor kule-insert esiqeda ukuyibona bachaza kabanzi ngama-difficulties asesekhona mangelana ne-treatment yabantwana, ama-ARVs. ‘What actually worries me is’ akakabi nezinto ezokwenza kubelula abantwana baphuze imithi, ‘like for instance’ umntwana uma ngaba esele ne-caregiver engugogo, umzali wakhe owumama ushonile, ugogo ufanele amnakekele ‘and we all know’ ukuthi oogogo bethu ngabantu abazange baye es’kolweni. ‘Are there any improvements in terms of’ ama-fixed dose combinations na? {IsiZulu} [In the insert we just saw, they explain about the difficulties of treating kids. What actually worries me is that there is nothing that makes it easier for kids to take their medication. For example, if the child stays with a caregiver or a grandmother. She has to measure and we all know that many grannies never went to school. So are there any improvements in terms of fixed dose combinations.]

Dr Nomfundo Nhlapo: I don’t know of particular studies but I know that there are people looking into administering treatment easier. And to answer your question about grannies who can’t see, you saw in the insert, they help by putting markers to show the dosage and give the child the correct dose. As doctors, what we try to do, as soon as a child gets to an age where we can start giving them tablets, we know it will be so much easier for the caregiver, then we change them from the syrup to tablets. Another problem common in children is that they come back and they have gained weight, the treatment amount changes. So to overcome that problem, what we do is that each and every time they come to the clinic, they go for a counselling session to show them that treatment has changed and the caregiver is given a chance to demonstrate if they don’t understand the new way of taking the treatment. Each and every time we see them we do what we call an adherence check, to see how they administer the treatment.

Thami Mthembu: Sometimes these pills have to be broken before being given to children. The insert showed that if it’s syrup, it can be measured with colour co-ordination. What do you do in instances like grannies in rural areas; where clinics are kilometres away and they are looking after these kids and they now need to keep going for regular check-ups? Do you ever have problems with that and how do you deal with that situation?

Dr Nomfundo Nhlapo: A policy we try to adopt in our clinics is that we do not educate only one person in a family on how to give the child’s treatment. If you can identify in the family someone who knows the child’s status, who is at an age of understanding, who will help the granny in calculating the medication. And if the granny is sick, they can take the child to the clinic. We call those Treatment Supporters. So during the counselling checks we tell them to bring someone from home who will take the child if you are unable.

Nokhwezi Hoboyi: Xa nitesta umntwana, niye nimchazele umama womntwana uba le-test eniyenzayo yi-ELISA or yi-PCR? Because i-counselling iyanceda for wena mama womntwana ngoba nguwe ogulelwa ngumntwana, uquqa wedwa es’bhedlele. And enyinto efika indikhathaze kakhulu, yandikhathaza mna, ndiyazi nabanye bayifumana. Ufike es’bhedlele u-doctor xa ezojonga umntwana, akujonge nje kube kayi-1 athi lomntwana ‘he’s not going to make it.’ Wena ungumama womntwana umile ujonge usana lwakho luyagula, uthini u-doctor uma etsho kunjalo ethi ‘your baby is not going to make it, this child is very sick,’ uvele uphelelwe ngamandla, bathi befika nalo-HIV nengculaza, uqond’ba ayisekho nam into endingayenza. Ndifuna ukuqonda uba ngoku niyabachazela oomama ukuthi le test esizoyenza sizokwenza i-PCR echaza ukuthi sitsheka i-HIV itself okanye senza i-ELIZA etsheka ii-antibodies zakho emntwaneni. {isiXhosa} [When you test the child, do you explain to the mother what test it is? Counselling helps the mother in dealing with the situation. Another thing that bothers me is, it happened to me and I’m sure it’s happening to others as well, when the doctors take one look at the child and says he’s not going to make it.]

Dr Nomfundo Nhlapo: To respond to that, the ideal situation would be if a pregnant mother, as soon as she gets diagnosed that she’s HIV positive, counselling should start at that point. “Mother you are positive and you and your baby’s options are these and these. And after you have delivered your child then you need to have your child tested at six weeks and longer reaching the 18 months. And if we test the child at six weeks, we do the ELISA at six weeks and then we must do it again at 18 months. You have the choice of ELISA at six weeks or 18 months or the PCR at six weeks. So if counselling is going from the time the mother is pregnant then by the time she delivers the baby, she is well informed that these are the tests available to me, this is how soon I must get my child tested. A more positive story, I think that the one good story you can get out of it is to imagine yourself being a mother of a four year old child, has never walked, has never talked and is just lying there. You start them on treatment and they run into your clinic office because of antiretrovirals, it’s the most beautiful thing and if it doesn’t move a person, I don’t know what will. I would love to be out of a job because me being out of a job means there are no kids being infected. And I feel government also needs to focus on preventing kids from being infected meaning strengthening the PMTCT programme. That’s where it should all start so that we do not see any more of these kids getting infected. Secondly, it is obvious that not enough kids are getting ARVs and they need to do that. We need to set up family clinics to make it convenient that when a mother goes to see us, we see the child too and this should be a family problem rather than individualising between the child and the parent. And you get parents who get appointments on different days from their children. It just needs to be more convenient and we need to focus on family treatment rather than individualised treatment.

Shalom Ncala: {Sesotho} [We hope that you have enjoyed today’s show and you are feeling the Siyayinqoba spirit, that together we can beat it. We value your comments and questions. Please contact us on the numbers below. Join us again next week. Until then stay healthy, stay positive]

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