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Episode 2 - Children and Adolescents on ARVs

This episode deals with a relatively new phenomenon that we are all having to come to terms with: children born with HIV surviving into their adolescent years thanks to ARVs! This is the new reality of the success of ARVs, and is the most stirring and convincing story of our ability to beat HIV and AIDS with ARVs.

Shalom Ncala: [Sanibonani siyanamukela nonke ehlelweni iSiyayinqoba Beat It! lolu hlelo elawo wonke umuntu wase Ningizim Afrika othintekayo esifeni sesandulela ngculaza kanye ne ngculaza. Namhlanje sizo dingida udaba olusemqoka lwemishwanguzo ezingane nabasakhulayo. Samkela usisi Flora Thobela, oyikhansela e-Adolescents Unit e-Desmond Tutu HIV Centre.] (IsiZulu) Hello and welcome everybody to Siyayinqoba Beat It! The show for everyone in South Africa affected by HIV/AIDS. Today we are exploring the important topic of antiretrovirals for children. We also welcome Flora Thabela, who is a counselor in the Adolescents Unit at the Desmond Tutu HIV Centre.

Shalom: (Sawubona.) [IsiZulu] Hello Flora

Flora Thobela: (Yebo sawubona Shalom.) [IsiZulu] Hello Shalom

Shalom: (Ninjani?) [IsiZulu] How are you?

Flora: (Siyaphila sisi unjani wena) [IsiZulu] I'm very well thanks Shalom

Shalom: (Kumnandi ukuba nawe namhlanje ngisayaphila nathi.) [IsiZulu] It's nice to have you joining us.

Flora: (Ngiyabonga.) [IsiZulu] Thank you

Shalom: Izingane ezinegciwane lengculaza eziphila ngemishwanguzo kufane ziphile impilo ejwayekile. Kufanele zihlele imfundo yazo imitsato yazo izingane zazo kanye nomsebenzi. Nalu udaba lethu lokuqala oluvela eMpumalanga Koloni. [IsiZulu] Children living with HIV on ARVs can look forward to a normal life. They should plan for their education, marriage, their own kids and jobs. Here's our first story for today from the Eastern Cape.

Siphosethu Warrington

New Brighton, Port Elizabeh

Lelethu Bangani: (Molweni sise Bhayi kwilokishi yase New Brighton. Sizothetha no Siphosethu ophila nentsolongwana kagawulayo) [IsiXhosa] Hi, today we're in New Brighton, in Port Elizabeth. We're here to talk to Siphosethu who is living with HIV.

Siphosethu Warrington: (Molweni) [IsiXhosa] Hi guys.

Learners: (Molo Siphosethu.) [IsiXhosa] Hello Siphosethu.

Siphosethu: (Ninjani?) [IsiXhosa] How are you?

Learners: (Siyaphila, unjani wena?) [IsiXhosa] We're very well, how are are you?

Siphosethu: (Ndi oright.) [IsiXhosa] I'm alright thank you.

Siphosethu: [Igama lam ndingu Siphosethu. Ndihlala kwa 3 eMaqoma. Ndi HIV positive kodwa lonto ayindenzi ndingabi nathemba. I-HIV uyithatha njengomntu ophila phakathi kwakho. Uqala ngale utye yona. Igama layo yi Lamivudine. Uze ngalena. Lena uyayivula su, uphinde uze ngale, nansti uyitye.] (IsiXhosa) I'm Siphosethu and I stay at number 3 Maqoma Street. I'm HIV positive, but that does not make me lose hope. I take HIV as another person living inside of me. I start with this one, it's called Lamivudine. And then this one. This is how you take it. Like this. Then I take this one.

Nomvuzo Matikinca: [uSiphosethu ngumnta ohlala kwisitrato sesibini ukusuka apha. Lo mntana ndamqhela kakhulu ngelaxesha kwakusweleke umama wakhe simana ukuya kowabo. Ndihlala kulo tata eCengimbo emana eyobuza pha lasisi ndingamfumana phi lasisi uhlala phi. Wade ngenye imini wandifumana apha kengoku. Wafika seku lathi. Ndathi kuye mntana wam umntana womnye umntu akahlali kube kusasa kube late, itya uhambe. Wathi ufuna ukuhlala ndathi hamba ndamxhotha wagoduka. Xa ndiyokumkhangela nge ngomso kwathiwa usesibhedlela eDora Ngiza. Xa ndifika esibhedlele ndava ngenesi ukuthi unentsholongwane. Ndimane ndiyombona ke phaya ngoku wakhala wathi ufuna ukuhlala nam. Xa esiya esikolweni ebeqhitha apha kum athi mandimenzele ilunch. Bekufuneka ndilale apha endlini yam ndenze ilunch ndine drinki zakhe zesikolo. Sahlala ngolohlobo sobabini.] (IsiXhosa) Siphosethu used to stay two streets from here. I got close to him when his mother passed away, we used to go there. I stayed in Cengimbo Street and he would go there looking for me. So one day he found me here and it was a bit late. So I told him to eat and go home, I can't let him spend the night here. He said he wanted to stay the night, I said no and eventually he left. The following day I heard he has been admitted to Dora Nginza hospital. I went to the hospital and the nurses told me he's HIV positive. I visited him regularly and then he said he wants to stay with me. On his way to school, he would come here for lunch. I had to prepare his school lunch and everything for him. That's how he ended up staying with me.

Siphosethu: [Ndicebisa abazali ukubangaba babagcazele abantwana babo ukubangaba ba HIV positive ngoba thina singabantwana siyakwazi ukufunda. Siyafunda siphinde uyabona ezipilisi unazo ziyafana nezi zisetivini. Xa une HIV sukuthi hayi andindikwazi ukudlala nabanye abantwana ngoba ndi HIV dlala nomnye umntana.] (IsiXhosa) I would like to advise parents to tell their kids if they are HIV positive because some of us can read and we can tell what these pills are for if we see them on TV for example. If you are HIV positive, don't think that you can't play with other kids because you have HIV, play with other kids.

Learner 1: [Ndingakwazi udlala no Siphosethu ngoba iHIV ayisuleli ngodlala isulela ngoku phatha igazi lomntu one HIV.]( IsiXhosa) I can play with Siphosethu, HIV can't be transmitted through playing. It is transmitted through HIV contaminated blood.

Siphosethu: (I worse xa onzakele ngoba thina apha esikolweni siyadlala nabanye abantwana. Sidlale. Xa athe wopha igazi sukumbamba biza umissi okanye uprincipal umntu ozancede lo mtana.) [IsiXhosa] It's worse here at school, we all play together. If one of us is bleeding do not touch the blood. Rather call a teacher or the school principal to help the kid.

Support Group

Shalom: (After watching such an insert, you normally don't know what to say about i-courage yabantu abasebancane njengalo mntwana because indithinta umxhele uma ngibona umntwana okhuluma as courages as uSiphosethu does about such a difficult situation akuyo. And it encourages abanye abantwana ukuthi babanone ukuthi nyani nyani there is life after HIV.) [IsiZulu] After watching such an insert, you normally don't don't know what to say about the courage displayed by children such as the one we've just seen. It really touches me deeply to see and hear a child speak out as courageously as Siphosethu does about such a difficult situation he finds himself in. And it encourages others to see that theres really life after HIV.

Busi Maqungo: (Mna I think that okuqala abantwana akufunekanga nje ukubana babe kule meko yoba bazalwe bene HIV. But ke sizo khumbula ke kwimeko ka Siphosethu ngoba uneminyaka engamashumi ananye ngoku, kungela xesha yayi ngekabikho indlela youkuba abantwana bathintelwe ukubana bangabinayo i-HIV. Akumnandanga sele umntu emdala ukuphila ne HIV. Akululanga even nalapha kuthi. Uvele nje you get to think inoba kubekelaphi kengoku emtaneni. Ingakumbi xa eyicacisa nento yoba abanye abantwana baye bayenze into yokuhlekisa uyayibona lonto leyo, bahlekise ngayo. I mean these are the things esithi si yah.) [IsiXhosa] I think children need not be born with HIV in the first place. But we will remember that in Siphosethu's case, he's about 11 years old now, he was born when we still didn't have ways to prevent mother to child transmission. Living with HIV is no walk in the park for adults. It's not so easy even for us. You can imagine how much more difficult it is for a child. Especially when he talks about how other kids make it a big joke of the whole thing, I mean these are the things that ....

Shalom: (Ndibuyele kuwe futhi sisi Flora isituation uSiphosethu azivumana ekuyo uyi orphan and at the same time kunama question efoster care yo mtwana ofana naye. Maningi na ama cases afana nale esicheda ukuyibona.) [IsiZulu] Sis Flora, Siphosethu is in a situation where he is an orphan and that about questions of foster care. Do you find a lot of cases like his?

Flora: (Yona maningi kakhulu othola ukuthi abantwana abaningi babhekwa zi caregivers ingaba ngo aunty, ogogo amangenalo ichiwane leHIV. Akazi lomntu ukuthi into enjani le ifeela kanjani. Akanawo amandla okumtsela umntwana ukuthi buka nantsi into eyenzakalayo empilweni yakho manje. Yenza ama problems nje emtaneni ukuya ekliniki everytime eye kliniki akayazi ukuthi uyelani. Udla amapilisi zonke intsuku ngekhathi eyifananyo kodwa akazi ukuthi yonke lento ayenza yo uyenzelani.) [IsiZulu] There are lots of cases like this and most cases the kids are left in the hands of caregivers, like aunts and grandparents, that are not living with HIV. They don't have that experience of living with the disease. And so they don't have the courage to tell the child what is happening. It's very problematic for the child. They go to the clinic all the time and yet they don't know why. They have to take these pills everyday at the same time, and they don't know why.

Fanie de Villiers: Something that was very nice that Siphosethu said on what we saw here was the fact that he is not going die. It made me realize and made me look back into my own situation. And I think that medication is an alternative we should really go for it. Get kids on antiretroviral treatment if they need it. You can still build your life. I started when I was very young. I have bugged up a little bit by being stubborn and the issues of dealing with treatment and teenage. Once you get over that, once you realize that you can build a family, you can build yourself a career it's possible. I have made it and I have made it for twenty four years and I am going strong. And I am going to say it again HIV will not kill me I would rather kill it. So from the help of the medication I am killing it.

Busi: (Ndicela ukubuza usisi Flora nanje ngomntu osebenza nabantwana abasakhulayo, abachaphazeleke yi HIV xa unika i-counselling umntu okanye kufuneka exelelwe into yokuba kwenzeka lento ebomini bakhe uHIV positive. Setheba kufuneka echazelwe ngesimo sakhe into yokuba wena ungumntu oHIV ngoluhlobo ngoluhlobo. Do you find it ukuba bona bayifumana iconfuza lento bengayi understandi okanye ngoba if sijonga kwi case ka Siphosethu ukhangeleka njengomntwana o-educated when it comes kwi HIV. Unolwazi you wouldn't expect that from an eleven year old.) [IsiXhosa] As someone who works with children living with HIV, when it comes to counseling the child and telling them about what's happening. When the time comes to tell them that they're living with HIV, do they find it confusing, do they understand? Because if we look at Siphosethu's case, he seems to have all this knowledge about HIV. You wouldn't expect that from an eleven year old.

Flora: (Ngesikathi mina kwakufanele ngitshele umntwana wami waye na three years nje kuphela kodwa wa-understander. Akhonto engakho engangiyazi at the time. Ngangi mtshela nje iluhlaza injalo ukuthi ngine HIV kodwa wa-understander.) [IsiZulu] When I had to disclose to my child, he was only three, but he understood. I didn't know much myself about HIV at the time, I just told him that I have HIV, and he understood.

Shalom: Another thing that I actually wanted us to talk about especially you Fanie because I know you actually founded at a very young age that you got HIV. If it helps us to understand at such a young age, what are your feelings about this, what do you go through?

Fanie: First you got to deal the issue of HIV. I had to deal with find out that am positive and immediately after that starting on medication which was a bit too soon. You first also have to focus on your teenage life. What is teenage life? It's exploring life, creating your owness. On top of that all you have to deal with HIV and medication and that makes it very difficult.

Busi: But Fanie in your case, firstly how did you find out about your HIV status. And when it come to school how did they handle it?

Fanie: I didn't have that much of a problem due to the fact that I was a good liar, I could hide it and that is what I did. I found out through my parents, my parents told me in a much later stage. They found out when I was already six seven years old. And I decided not to tell anybody. Not to tell any of my friends. I would say today if I looked back to it, it would have been nice if somebody was there. It would have been nice if the situation was there and the acceptance was there from your friends and everybody that they would understand. I mean it would make anybody feel safer.

Shalom: (Hlanani nathi siyabuya khona manje.) [IsiZulu] Don't go away, we'll be back.

Shalom: (Siyakwamkela futhi ku Siyayinqoba Beat It! Udaba lethu olulandelayo wolwasesifundazweni sase North West.) [IsiZulu] Welcome back to Siyayinqoba Beat It! Our next story is from the North West Province.

Abraham Liebenberg

Klerksdorp, North-West Province

Mxolisi: Mgoboza (Namhlanje i-Siyayinqoba team ise Klerksdrop sizo kuthetha nomngane wam u-Abie okudala ephila negciwane lenculaza) [IsiZulu] Today we're in Klerksdorp to see Abie who is living with HIV.

Abraham "Abie" Liebenberg: I have been living with HIV since shortly after I was born. Even though I was only diagnosed about three years ago in 2005. The reason I was living with it since shortly after I was born is because I was born premature and I had a few blood transfusions.

Young Abie: Being HIV positive is not a death sentence. I think that we should live life to the full and do the best we can do in everything that we do do.

Abie: When people hear about HIV they are like oh my goodness they going to die, its a death sentence and staff. Meanwhile it's not a death sentence because we are all going to die after all one day usually.

Marnie Vujovic: We have a very large number of children who are on treatment and increasingly we found children who were parentally infected which means their were infected through mother to child transmission. Those children are surviving longer thanks to antiretroviral therapy. And we have increasing numbers of children who are now around ten, eleven and twelve years of age who are going to become adolescents. But one of the problems that they face when they are HIV positive is that the carry the secrecy of their status. And that means almost that they feel that they maybe living a lie and they can't talk openly to their peers, they can't share with their peers. They are worried about being stigmatized and stigma is a very real concern for most adolescents.

Abie: I know that there is a stigma attached with the HIV/AIDS virus and disease because I have come across a few people that I haven't told, that I was thinking of telling them, but when I discussed with them about HIV/AIDS, then they act like it is a death sentence and they are really quiet close minded and uninformed about the actual disease. That is why I try to tell a certain amount of my friends and I am trying to change my other friends' perspective about HIV/AIDS to be able to tell them about my status.

Marnie: Adherence is a major challenge in adolescents. There had been numerous theories put forward as to why it is such a problem during the adolescents years. One of the suggested reasons has been this is a stage which young people feel that they are invisible it can't happen to me bad things only happen to other people. Another reason is adolescents like to feel that they are like their other peers; they like to feel that they are not different from others. And the step, the diagnoses of HIV leads them to believe I am different, I am different, I am in some way contaminated, and I have some sort of defect. Having to take medication reminds them of this and they would rather forget it, they would rather not think about their status at all. So they tend to push it aside and adherence obviously becomes a challenge under those circumstances.

Abie: My family, my mom and my dad they don't really treat me any differently from my sister because of my status. They treat me as their son because they know that I don't want to be treated differently from anyone else that they can even come across on the street.

Mxolisi: What reminders do you have to take your medication everyday?

Abie: Well actually, I remember to take my medication basically with the whole family because that's easiest thing for me. I set reminders on my cell phone that go off every time that I need to drink my medication and the rest of my family have decided to copy me as well. So now everybody has reminders on their phone to go off every time I have to take my medication.

Mxolisi: Do a lot of HIV positive adolescents get depressed?

Marnie: That is an important question to ask and I think we need to be really aware the risk of depression amongst adolescents. And its something that we see commonly and what is most important is that depression is actually picked up and that it's addressed. Depression can lead all kinds of complications; it can affect the child's performances at school. But I think perhaps importantly is that it hasn't impact on how the child the young person sees their future. It affects their philosophy of life and it makes it difficult for them envision the future for themselves.

Abie: Just this morning when I was trying to think of what was going to happen during this interview, I was busy crying and I was thinking how could someone fall in love with anyone that they know has got HIV/AIDS and how could I try and start a family? My mom was busy talking to me about all the different couples that she has heard of and seen that fell in love after they already knew that the other person had HIV before they fell in love with them. So that made me feel a bit better and I just plucked up the courage out of the deepest of my soul to do this interview and I am quiet happy with it.

Support Group

Shalom: (Sisi Flora u-Abie ukhuluma ngezinye zezinto azi experienceyo njeba asakhula. Like for instance le part yoku gcina indithinta kabuhlungu kabi ngoba I was once a teenage nami in my life. I know how confusing it is mosu yi teeanager ozokwazi ukuthi ozobhekana nandaba ze lokhunjana ezogcantsi nokuthi ufuna ukutshata. Maybe uneworry wokuba abantu nge nje bakuthande for instance ukuba uneHIV. But ke ndifuna ukwazi kahle kahle wena indodana yakho siyazi ukuthi ine HIV and ukhule enayo ni adjuster njani kulo situatiation leyo ukuze akwazi ukuthi abengumuntu o-adhere perfectly torwards i-treatment yakhe is it simple or is it hard?) [IsiZulu] Abie spoke about some of the things he's experiencing as he grows up. The last part of the insert really touches me because I was once a teenager and I know how confusing it is for a teenager when faced with issues of sexuality and perhaps marriage. You start to worry that on one will love you with your HIV. Now with your son, we know that he's living with HIV, what kinds of adjustments did you have to make for him to be adherent to his medication for instance. Is it simple or it is hard?

Flora: (Bekungekho simple because uqale itreatment ena nine years. Wenza kahle moss uyayazi yonke into kangokuthi ebefundi abanye abantu ukuthi itreatment why kufanele, wayeyibeka ngokuthi" he has to recharge every twelve hours in twenty four hours" Uma kufika esinye isikhathi I think he was twelve lapho khona wayengasafuni khona ukuthatha itreatment. Everyday kuyaliwa kufuneka adli treatment. Kodwa into eyathi yasisiza kakhulu kukuthi ngilalele ukuthi kahle kahle iyizathu laa zongafuni ukudla itreatment makube yini. Wabeki s'celo nje ngikhakhele manje ndi needa ukunikezwa ibreak. So lento wangi fundisa ukuthi ngiya needa ukuthi ngimnikeze that platform where he can express ufila kanjani. Ngingalwi naye kodwa ngilalele ngizwisisise kahle lento le. And then sithole indlela yokuyenza lento ozomenza akwazi ukuqhubeka yonke imihla ehlu treatment for life.) [isiZulu] It was not simple because he started treatment at the age of nine. He did very well and he understands everything. He'd even explain to others what he has to be on treatment. He would say he has to recharge every twelve hours and twenty four hours. And then at some point, I think he was about 12, he didn't want to take treatment anymore. We had to fight everyday for him to take his treatment. What helped me was taking an effort to listen to his reasons why he refused to take treatment. He just told me that he's tired, he needs a break from all this. And so that taught me the importance of allowing him a platform where he can express how he feels. And for me to listen and understand instead of fighting with him. And then we can both work on a way forward, with him continuing to take his treatment everyday for life.

Fanie: Something that really just knocked me is the fact that he said that he would never be able to find love. All of that staff leads to depression. You become abnormal to yourself. You don't want to make certain decisions; you don't really want to study because you are not feeling the same as you see your friends are. The whole fact of taking a bunch of tablets every morning and every night already makes you feel aha. I never felt normal; I also thought who would be able to love me? I had to deal with a situation where the relationship got to point where it became sexual where I had to open up about my status because I was in a relationship where my status was not known during that whole relationship. And that disclosure part was difficult because how do you, what the first thing that is going to happen if you disclose she going to leave me. And obviously she did and lucky she did not run around the whole school telling everybody and up until today I would take off my hat to her. But it's those types of issues that make it difficult. Now you are in a relationship how you do explain your tablets. Sorry I've got to go home because seven o'clock my little alarm on my cell phone or whatever will go off and I have to take my tablets. People will start to ask questions and that's the difficult part and working around that.

Flora: (Udla lamapilisi adleka kalula uwadla ekuseni nalate kuphela.If manje ukwazile ukuwdla ungaphila iminyaka eminingi. Usebenzisa lamapilisi ayi-one akwazi ukukusebenzela kahle.) [IsiZulu] You take these pills in the morning and evening, simple. If you adhere to those pills, they will work for you for many years.

Busi: (In fact ngoku into evelileyo is that with itreatment lena ikhoyo ngoku abantu for instance am on treatment ngoku, ndingakwazi ukuba kwitreatment for the next 29 even 39 years which is a long time on itreatment. And in the mean time asiyazi oso science bazakuthiqhi nantoni ukuhlangabezana okanye ukongeza kwezozinto ezo. So it goes back kulanto youkubana with itreatment iARVs ziyabuguqula ubomi bufane nawowo wonke umntu, ungabi namahluko because u-HIV positive.) [IsiXhosa] In fact one of the developments I heard about is that with the treatment we have today, for instance If I'm on treatment now, I can stay on that treatment for the nest 29 even 39 years which is a long time on treatment. And in the mean we don't know what the scientists can come up with to add on that. So it goes back to the fact that ARVs can change you life and make it normal. You need not be different because you're HIV positive.

Shalom: (Akhe sithathe ikefu ngokushesha. Hlala nathi unganyakazi.) [IsiZulu] We just have to take a quick break stay where you are.

Shalom: (Siyakwamkela ku Siyayinqoba Beat! Futhi. Njalo ngonyaka ingane ezi zingulungwane ezingamashumi ayisithupha nesihlanu zihlolelwa ingculaza eniNguzim Afrika. Lezi zingane zidinga ukunikwa imishwanguzo masinyane. Yilowo nalowo phakathi kwazo unelungelo lokuphila impilo ejwayekile. Kudingeka ukuba kuphakanyiswe izinyawo ukuze kukhuthazwe izingane eziphilwa negciwane lengculaza ukuze kusizakale izingane eziningi njengoba kwenzeka ku Abie no Siphosethu. Uma unengane enengculaza noma ucamanga ukuthi inayo ithathe iyohlolwa, xhumana nodokotela wakho mayelana nokuqala imishwanguzo. Hlolwa. Hlola izingane zakho. These bangle show that we are taking responsibility and keeping it safe. Zivikele futhi uvikele nabanye. Protect yourself . Protect others. Salani Kahle. Bye bye) [IsiZulu] Welcome back to Siyayinqoba Beat It! Every year 65 000 children test HIV positive in South Africa. These kids need to be put on treatment as soon as possible. Ever yone of them has a right to life and can lead a normal life. There needs to be a step up in support for kids living with HIV so that there are more success stories like Abie and Siphosethu. If you have a child who is HIV positive or who you think may be get them tested and ask your doctor about starting on ARVs. Get tested. Get your kids tested! Protect yourself and protect others! Bye bye