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Siyayinqoba Beat It! 2004 Episode 25 –

Lusikisiki ARV programme

In Lusikisiki in the Eastern Cape, a pioneering project showed that when healthcare workers and the community work together, they can implement life-saying antiretroviral medication just as well as more well-resourced urban areas.

Jason Wessenaar: Sanibonani [Hi] and Welcome to Siyayinqoba Beat It! Support group. My name is Jason and I’m part of Siyayinqoba a support group of people living openly with HIV. Each week we get together to talk about issues that affects our lives from work place issues, social grants and gender based violence. USiyayinqoba nguhlelo lwako lokhu phila kangcono ne HIV {IsiXhosa}. Siyayinqoba is your guide to better living with HIV. So if you are living with HIV or you have or you have a partner, a family member or a friend who is HIV positive this programme is for you. One of the biggest things to have happened for HIV positive people was the announcement that antiretroviral treatment would be available in public hospitals. In 2004 only about 10 000 people will have access to treatment in the public sector out of half a million who need it right now. It is a sad reality that many people die while waiting for this treatment. Our National Treatment Plan is committed to ensuring that the antiretroviral treatment rollout does not overlook rural areas. In Lusikisiki in the Eastern Cape, a pioneering project is showing that when healthcare workers and the community work together, they can implement life-saying antiretroviral medication just as well as more well-resourced urban areas. It gives me great pleasure to welcome Sithembiso Mabasa, a counsellor from MSF treatment programme in Lusikisiki. Sithembiso who is living with HIV is here to answer some of our questions on today’s topic building treatment programmes in historically unresourced areas. Let’s see what the Siyayinqoba team find out when they went to Lusikisiki.

ARV treatment in rural areas

Lusikisiki, Eastern Cape

Bomikazi Phandela: Ndingu Bomikazi Phandela apha eLusikisiki. Ngoku hlala ndidlala eSlovo. Ndisukuma ngokuba ndininazise ukuba ndiphila nentsholongwana kagawulayo. Ndingaziva kakhuhle ngexesha kufike lo MSF ovela eCape Town wasincenda ngamayeza ekuthwa ziARVs apha eLusikisiki. Ndibe ngumuntu wokuqala ukuzitya ezipilisi ekuthiwa ziARVs, Anti-retroviral drugs apha eLusikisiki. Ngo October unyaka ophelileyo ngezi 27 ndaziqalisa ndazitya, ukuzitya kwami andizange ndiqalese ndivele ndizitye nje, ndiqalwe ndatsalwa igazi kule CD4 count. Eligazi leCD4 count lebala amajoni wakho ukuba intsholongwane seyikusebenze kangakanani apha egazine. Kwacaca ukupha seyindisebenzile. Ndingathi mandithethe ukuba nxa wuncungela ukuba ndingaya nanini ngaphantsi kumuhlaba. {IsiXhosa} [I’m Bomikazi Phandela, from Lusikisiki. I stay at Joe Slovo. I’m standing here to let you know that I’m living with HIV. I was not feeling well. But, as time passed, MSF arrived from Cape Town and brought the medication known as ARVs here at Lusikisiki. I was the first person to get the pills known as ARVs, antiretroviral drugs here at Lusikisiki. I started taking them on 27 October last year. I didn’t just take them; they first took my blood for the CD4 count. The CD4 count counts the amount of immune system cells and how much the virus has damaged your immune system. They found a lot of damage in my body. People thought I would die at any time.]

Dr Hermann Reuter: Initially when we came here very little was happening in terms of HIV. People might have got very sick, were admitted to the hospital, and some of them were tested for HIV. But, apart from that, there was no services really offered at the clinics. So we introduced the rapid tests at all the clinics. Many people think that antiretrovirals need a lot of technology, a lot of doctors. This is really not necessary. The nurses will be doing most of the work seeing the patients. We’ve got a protocol which nurses can follow easily, saying all patients start on these medicines. If this side-effect occurs, this is how you deal with it. So nurses can easily deal with it. My task as a doctor is basically training the nurses, and giving them the confidence to start the programme.

Sister Kala (Village Clinic, Lusikisiki): We are trained to know to treat these diseases and our people are treated very well.

Sister Bandesi: And before we trained, I was a little bit negative about these patients who are HIV positive because we are lacking knowledge about them, nê. So now we are very positive towards them.

Bomikazi Phandela: Kukhona ipilisi ekuthiwa yi Nevaripine, 3TC ne D4T. Ndizityile ipilisi kulonyaka kulonyaka ndaqalisa ndaphinda ndatsala elagazi kwabuya izingxelo zithi ndino 7 zabuya ingxelo zithi ndino 499 ke ngoku. Ndabe ndisiya esikalini ndakala sendithi 75 ke ngoku. Andiva into ebuhlungu ndingu Nobomikazi ndine pre-school endiphangela kuyo, akonto enye into endiyivayo. {IsiXhosa} There are tablets known as Nevirapine, 3TC and d4T. After I had taken the pills, they tested my blood again. The test showed that my CD4 cell count has gone from 7 to 499. My weight went up to seventy five kilograms. I don’t feel any pain. I’m still the same Bomikazi. I’m still teaching at the pre-school.

Support group

Jason Wessenaar: Sithembiso what was the situation like in Lusikisiki before the project started?

Sithembiso Mabasa (Lusikisiki ARV Programme): The project started in February 2003. Before then people were not open about HIV. Nobody was talking about HIV; people believed that they were bewitched. As a result people were dying like flies.

Busisiwe Maqungo: Kwi situation yerural setting uya undertander ukuba izinto zinjani ne zinto ezinjenge stigma, i-education engekoyo, abantu abazinto ngalento. The next thing yintoni uzoyifumana emveni koko. I think if izinto bezi worse before i-ARV treatment, nami ndisuka ezilalini so ndiyazazi emeko zinjani apho. {IsiXhosa} [Most people who live in rural areas are illiterate, there’s stigma, no education and people don’t know about HIV/AIDS. I think things were worse before without ARVs. I’m also from the rural areas and I know how the situation is.]

Sithembiso Mabasa: Abantu ezilalini abanayo i-access yokuba bafunde amaphepha i-newspapers and again abantu abafani nabantu basezi doropini. Abanazo i-televisions ukubona abantu abaphila openly with HIV. {IsiXhosa} [People don’t have access to newspapers to get information. People don’t have TV to see people living openly with HIV.] So there’s no flow of information. Ezilaleni uyabona. So, kundawo like uLusikisiki umuzekelo into incedileyo yikuba endlela yokuhambisa i-information ezelalini yindlela yokuba kweziwe i-community mobilasation, kuthethwe nabantu, kuthethwe umulomo nabantu, umulomo no mulomo ezilalini akufani nasezi doropini abantu banona ezi tivini na ku newspaper. {IsiXhosa} [So, in a place like Lusikisiki it helps to build community mobilisation to spread information about HIV and AIDS. People depend on word of mouth, unlike in the cities where people depend on TV and newspapers.

Anthony Fernandes: How did the community realise that HIV is a disease and not witchcraft? Meaning, what kind of panic, when people say they’re bewitched and people are dying like flies, how did they assist each other emotionally? Where did they go? Where did they ask for help and when did they realise this is a sexually transmitted disease, most of the time, and to prevent it?

Sithembiso Mabasa: Abantu bebase ne AIDS vinto besiyenzeka besiya ezangomeni apho kuhambe uyovunyiswa bahambe gcweleni ukuba belingeko elinye uncedo belikhona I mean yokuba abantu bancedakale. Nami ndinomunye wabo obenganalo elothemba into yokuba mawophila neHIV kungakwazi ukuphila. Kangangaka kwamina ekuqaleni kungakaqali leproject, nami ndandi nciphile ndingaka. Nxabaqala leprograme bekungeko mntu onethemba ukuthi kukhona apha azoyakhona, kuba nxa usiya eklinic oknye esibhedlela vele uneAIDs into bewuyifumana yinto yokuba hamba khaya. {IsiXhosa} [People who had AIDS visited the traditional healers to seek help. There was no other help to cure it. I’m also one of the people who didn’t have hope, that if you are HIV positive you can live a normal life. Before the project started I was thin. When they started the programme, people didn’t have hope. When you went to the clinic or hospital and you are HIV positive, they told you to go home] and die, because there’s nothing that is going to be done for you.

Busisiwe Maqungo: ILusikisiki henye yedeepest rural areas ezizakhe zabakhona and nge nxa yemekho zakhona mhlawumbi izinto zinga njongeka zi impossible, because ngokubona kwami izinto are very beautifull ngoku eLusikisiki. But, nani beninayo i-picture yokuba ingaze iyenzeke into yangalo hlobo and when nxa zifika ezizinto nanibona kuyinto enokwazi eyenzeke and iphumelele indeyifikelele kuledaba elifikelele kuyo ngoku? {IsiXhosa} [Lusikisiki is one of the deepest rural areas because of their difficulties, things seem impossible. Things in Lusikisiki are working very beautifully, but, did you see it turning out this way? Did you ever imagine that it will succeed to that point?]

Sithembiso Mabasa: There were lots of things ebezikoyo because bekungeko umuntu o-clear ukuba lento ye ARVs izosebenza kanjani in rural areas. Everybody ubengana vision on how is it going to work. [about how the ARVs will work in rural areas. Everybody didn’t have a vision.] Then MSF engaged in a partnership with the Nelson Mandela Foundation. Ngengoku i-programme ya end- up izo launcher ngo Nelson Mandela himself. [The programme was launched by Nelson Mandela himself.] Then with that good leadership of Mandela that is leading by example, abantu bazibonela personally ekupha iARVs ezinika uAkona NtsalubauNtsaluba bekaqala i-ARVs. Lanto yayenza everybody uyaqonda uMandela uyamuthemba moos, unala influence. Yanza ukuba wonke umuntu kunyanye ukuba chin this thing is working and is going to work anyway uyaqonda. The ke ngoku as I said since uMSF asi starthe February 2003, ukwaze ukumananger implementa i-ARVs only in October 2003. All those month ukusukela ngo February upto October belulevelisha igrounds that imeko ibe suitable for ukuba kunga provider iARVs {IsiXhosa} [people saw him with ARVs in his hands and giving it to one of the HIV positive people. Everybody started believing because of Mandela’s presence. Everybody believes in him because of his influence. It opens their minds. This thing is working and it’s going to work anyway. Ever since MSF started in February 2003, they only managed to implement ARVs in October 2003. All those months from February to October, they laid the ground so that it was suitable for ARVs to be provided because ARVs,] as we know, is the last part of it. It’s very comprehensive; you’ve got to take into consideration VCT, community mobilisation, PMTCT, treatment of opportunistic infections, up to ARVs.

Jason Wessenaar: We will talk more about Anti-retrovirals in Lusikisiki after the break.

Jason Wessenaar: Mohe reya ho amohela mona hoSiyayinqoba Support Group. {SeSotho} The programme for everyone infected and affected by HIV. The Siyayinqoba team met up with Alunda Mbebenza and HIV positive nurse in Lusikisiki project. She shows us the role of nurses driving the Anti-retroviral programme in under resoursed areas.

ARV treatment in a rural area

Lusikisiki, Eastern Cape

Women 2: Ndiziva ndi right ukuba bendingakaziqali i-ARVs bendi ukuthi noma ndilambile ndingabi na appetite yakutya. Ngoku nditya kakhulu, kunde kukhuzwe ukuba yo utya kakhulu, uyakugqiba ukutya, ndiqonde ukuba ndiyonwaba kande ndingatyi ixesha ilide. {IsiXhosa} [I’m feeling alright because when I was not taking the ARVs, I didn’t have an appetite, but now I can eat a lot. Other people can see that I can eat a lot. Now I’m happy because before I couldn’t eat.]

Sithembiso Mabasa: Before MSF arrived here there was a kind of a stigma around HIV. It was not something to talk about, even in the street. Then MSF and TAC, they kind of produced t-shirts which were written HIV positive, you know, that was the start, to break the ice around the HIV.

Women 1: Siyesaya nese Cape Town ngo 14 ka Febri sizama ukucela ucedo kurhulumente yokuba asinike izithomalisi ze ntsholongwana esizibiza ukuba zi ARVs. Sine zindaba ezimunandi kengoku intoba urhulumente uye wavuma intoyoba ziqalise ukusebenza ezithomalalisi zentsholongwana, urhulumeni unike usebe lezophilo inyanga izimbili ukuba iqalise ezithomalalisi. {IsiXhosa} [We went to Cape Town on the 14 February. We asked the government to give us ARVs that pushes down the HIV. We’ve got good news; the government agreed that the ARVs must start working. The government gave the Department of Health two months, before we can start using the ARVs.]

Dr Hermann Reuter: Patients have to take the ARVs for the rest of their lives. They have to be educated well about the treatments, the benefits of the treatments, the possible side-effects, and the counsellors play this role. They do it on an individual patient basis, but they also do that education within a support group.

Sithembiso Mabasa: The counsellors started to do the VCT and form support groups. Then with those support groups, it helped a lot to sort of make the community aware that HIV is not something that we cannot talk about. It’s a disease we can name because before that it was a disease without a name.

Bomikazi Phandela: Ndafika ke nda tester wandi biza uSister ndangena gaphakathi nda tester, ndalinda le fifteen minutes kwathiwa mandiyilinde, ekuyilindeni kwami ndangena ngaphakathi endlini ndafika kwathwa ndinayo intsholongwane, ndiyachaphakezeleka. {IsiXhosa} [When I arrived I got tested. The sister called me and I went inside to test. I waited 15 minutes. When I went inside they told me I’ve got the virus, I’m infected.]

Sithembiso Mabasa: The training that has been provided to the nurses, at clinic level, it changed the situation, because after the nurses had the knowledge they changed their attitude. They were so keen and interested to help the people, because they know what to do now.

Singer: ARVs zangena eLusikisiki intsholongwana yabaleka {IsiXhosa} [‘In Lusikisiki the ARVs arrived and the HIV ran away.]

Sister: Nxa wuthatha amapilisi siyazi intokubana funeke ubengumuntu ozasixelela ukuba uyazitya ezipilisi. Uzitye ubomi bakho bonke, akukho apho uzasuka uthi andizityi khona, ndingayi seli ezipilisi ngoba ndiziva ngcono uyaqonda. Nxa siphakishayo nantsiya, nantsiya zimbini yi 3TC kunye neD4T. So ke apha uzawusayina ukungaba uva enyinto uyivayo nazi inumber apho uzaphonela khona. {IsiXhosa} [If you are taking these tablets, you must know that you are going to use them for the rest of your life. You don’t get a day off from these tablets. Even if you feel better you must not stop taking them. If you are taking the pills, here they are 3TC and d4T. So you are going to sign here. If you have any problems here is the number you can call.]

Support group

Busisiwe Maqungo: Onesi endlela abayenza ngayo ingaba abantu nabo kengoku banayo la faith, ihamba kanjani ndicela usicacisele? {IsiXhosa } [Do people have faith in the way the nurses operate? Can you please explain to us how it works?]

Sithembiso Mabasa: Amanesi bese aqonda ukuba ba frustrated ngolwahlobo kuba kalokhu lomntu akangwe atrithwe namhlanje njengoba bekafikile. Ufikile nahlanje akakwazi ukutrithwa surely ngomso uyabuya kubuya same muntu. So lento ke ngoku yahlala emanesini iyintoni iyintlungu ukuba kwayo lomtu as a result yayi shintsha i-attitude yamanesi, amanesi a end-up ane bad attitude towards abantu because they cant help ypu know. Then ke ngoku ngenxa yefundiso MSF kengoku ne aqalisa amanesi ayi realiza iqale ke ibhola ukuroller because lomntu umobiliziwe ku community kwathethwa naye wa educator nge HIV, the nxa afika eklinic ufika uyayifumana iservice, i-counselling, post-test counselling. Then ke ngoku yabe iqubeka ibhola, kwafundiswa ke ngoku amanesi intoba how to treat opportunistic infections ke ngoku. Lento ke ngoku yanceda beacsue ngaphambili bekungana ugqirha uhamba eziklinik ojikeleza ezikliniki. Ikliniki bezi raniswa ngamanesi. {IsiXhosa} [The nurses get so frustrated when a patient is not taken care of. It affected the nurses’ performance, because people were complaining. It changed the nurses’ attitude. The nurses had bad attitudes towards people because they can’t help. Then, through MSF’s educational programme, the nurses realised the importance of treatment literacy and the ball started rolling. The people were mobilised in the community, they were trained and educated about HIV/AIDS. When they go to the clinic, they get service, they get counselling, testing and post test counselling. The information keeps on growing. Nurses were being trained how to treat OIs. This helped, because there were no doctors to monitor clinics. The clinics were run by nurses.]

Vuyani Jacobs: It just shows that the rural concept, in poor communities, in poor areas, in poor countries like Africa, Asia and other areas, that nurses can take control over the access and the actual health of our people.

Sithembiso Mabasa: Inesi babona abantu abakufitshane ku community. {IsiXhosa} [Nurses are closer to the community.] They speak the same language as the community; unlike the doctor. You know, sometimes in rural areas we don’t have that openness, as it is in urban areas you know. If the doctor tells you something, just take it, you don’t question, you know, because you don’t even understand the language that the doctor is saying, the nurse has to translate for you, you know.

Jason Wessenaar: Let alone the handwriting.

Sithembiso Mabasa: Let alone the handwriting. Ukusebenzisa amanesi especially in rural areas {IsiXhosa} [The work of the nurses, especially in the rural areas,] it makes it very easy, it makes the health system to work very smooth because with the nurse, if I’m speaking Xhosa nê, I can easily communicate what I’m izifo zami [suffering] from; unlike with a doctor.

Busisiwe Maqungo: Unokwazi futhi ukumubuza akuchazele or akucacisela ngalamaciza uwathathayo ukkululekile ungana cala. {IsiXhosa} [You can even ask them openly about medication you take without any worries.]

Sithembiso Mabasa: And ezinye izifo azindingi yeza zindinga ukuthi uphiliswe emoyeni , ndinga ukuthi ufumane icounselling. Zizinto ezima ukuthi uzichaze kugqirha and you can not ukubalisela ugqirha yokuba enye yezinto inoba ndiyangula, inoba indoda yami indiphethe kabi. You cant say ezozinto kugqirha. {IsiXhosa} [Some diseases don’t need medication, you need counselling. It’s hard to tell the doctor, about the problems you’re having with your man at home,] because he doesn’t have that time, but you can tell the nurse. It plays a very big role and we must involve the nurses as much as we can and to empower nurses as much as we can in order to improve the health system here.

Vuyani Jacobs: The alliance between the nurse and the community becomes a better thing to make sure that the system works for us. Because I think that as Lusikisiki pointed us out, communities must take over the running of their programmes, be it health, be it social and so forth, because the solutions comes from within.

Jason Wessenaar: Re saya mabenkeleng {SeSotho} [We are going to the shops] we will be right back. We will be right back

Jason Wessenaar: Welcome back to Siyayinqoba Beat It! We are talking about treatment programmes in rural areas, with us is Sithembiso from Lusikisiki.

Busisiwe Maqungo: I Love Lusikisiki nyani because abantu baseLusikisiki bayenza umsebenzi omkhulu nohle and kube besishilo ukuba iLusikisiki yenye yelali nyani ilali lali, umntu angozo themba ukuba kungaphuma into ihle nyani. [I love Lusikisiki because people in Lusikisiki are doing a great job. As we’ve said, Lusikisiki is one of the disadvantaged rural areas; people will not believe that something good will come out of the place.] But when you started the community mobilisation, there was no need for offices or other facilities. It was an idea that worked well. Yenye yezizathu iyenze ukuba mayidileye iroll-out yezi ARV because bekukhona ezazinto ukuba abantu abamunyama bazakwazelaphi ukuthatha ezinto uyaqonda izinto ezi-negative abantu abamunyama abaligcini ixesha, abantu abamunyama amanzi abantu aba-poor but kwindawo enjenge Lusikisiki uyiyenze clear ukuba yonke into isuke. {IsiXhosa} [One of the reasons that the ARV rollout programme was delayed is because it was said that black people can hardly keep time. They said they don’t have water and they are poor, but it showed that the programme worked well in Lusikisiki.]

Sithembiso Mabasa: We were visited by Department of Health, Eastern Cape. Department of Health was very concerned about us implementing the ARV programme in the rural area. One of the thing that the Department of Health mentioned was that the people of rural areas like Lusikisiki are poor. They don’t have food. Secondly, that the people are rural areas like Lusikisiki are illiterate. Therefore they won’t be able to take their medication properly. The other thing was that we won’t be able to implement the ARV programme because we don’t have infrastructure. Those were the obstacles that we had to overcome, for which with the partnership with the Nelson Mandela Foundation we managed to overcome that. Point number one with the infrastructure, we realised and we did it, because we realised that with the infrastructure that we’ve got, we are able to do the ARVs, because ARV is not something so hi-tech. Because we had nurses, that’s the resource that we’ve got. We had buildings; that is the clinics. We had the provincial hospital where we can refer. That is the infrastructure.

Lihle Dlamini: If you say you can’t give people ARVs just because they don’t have food, it doesn’t mean they will get stronger if they don’t get the ARVs.Siyazi ukuthi ezilalini [In the rural areas] there’s lots of space for people to plow. Batshale umbona, namadumbe, ubhatata [They can plant mielies and sweet potatoes.] That’s all healthy food, the spinach and all that. And amanye amaterms [Some people have names] for ARVs; 3TC is “Three rand”, d4T is “For rand”, efavirenz is “Five rand”, seriously if I’m a person who’s going to be on ARVs and uBusi is my mother, I take her as my treatment supporter and my mother nose that I’m eating Three rand, Four rand and Five rand. So that is 3TC,D4T and Efavirenz so she won’t forget even CD4 cells we don’t call them that we call them amashosha womuzimba [soldiers of the body] and HIV we say is ingciwane or intsholongwane, so we must use lauguage that abantu [people] will understand. {IsiZulu}

Busisiwe Maqungo: Kunjalo, i- adherence niyibona injani? {IsiXhosa}How is adherence in your area?

Sithembiso Mabasa: Adherence is very good. Into iyenya kakhulu ukuthi i- adherence ibe-good is that kubabantu abathatha i- ARVs ayiyontoyabo nje kuphela wena mntu othatha i-ARVs i-community is involved The reason that it’s working so well, is that it’s not only for the people on ARVs. The community is involved,] and we’ve got the treatment assistant who is part of the community, you know. Because of that, the atmosphere is very conducive to rolling out the ARVs. As a result, adherence is going very, very well, as well as compliance. {IsiXhosa}

Jason Wessenaar: There has been a lot of arguments about why we’re giving HIV such priority in the health system. What are your thoughts on that? There’s been arguments that we should either be putting more money and resources on treating malaria and treating TB, instead of HIV. But what role can HIV play in improving the health system overall?

Sithembiso Mabasa: HIV yesinye yezifo esesabulala Bantu ehlabathini. Nevertherless ukuba iHIV ize nekufa okungaka ebatwini. {IsiXhosa} [HIV is one of the diseases that kill people. Nevertheless, even though HIV is killing our people,] but on the other hand, it’s helping us a lot to improve the health system here. In this way: Before the ordinary community can’t be involved in the health system and improve the health system, but with this epidemic of HIV, we learnt that the community can be involved in improving the health system.

Jason Wessenaar: Siyabulela Sithemiso, the support group, nani babukheli ikhaya. {IsiZulu} Thanks Sithembiso Mabasa, the Support Group and the viewers at home. Things to remember:

1. Nurses and the community can drive ARV programmes in historically disadvantaged rural areas.
2. Nurses need training to be able to take charge of the ARV programme.
3. Treatment literacy, community mobilisation and antiretroviral treatment help reduce stigma and discrimination.

We hope that you have enjoyed the show and are feeling the Siyayinqoba Spirit that together we can Beat It. If you have any questions or comments please contact us on the numbers on the screen right now. Join us again next week on the Siyayinqoba Beat It support group. Till then, stay healthy and remember that we can Beat HIV. Goodbye.

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