Home / Episode 8

Siyayinqoba Beat It! 2004 Episode 8 –

ART in Gugulethu

In this episode of Siyayinqoba Beat It! the support group discussed antiretroviral therapy with studio guests Dr Linda Gail Bekker and Sister Lulu Mtwisha. The guests explained the importance drug adherence.

Jason Wessenaar: Kgotsong, re ya le amohela ho Siyayinqoba Beat It! Support Group. Lebitso la ka ke Jason. {SeSotho} [Hellos, we welcome you to the Siyayinqoba Support Group. My name is Jason.] I am living with HIV. In the Siyayinqoba Support Group we are all living positively with HIV. Siyayinqoba means we can beat it. Every week we get together to talk about issues that affect our lives with HIV. Uma uphila negciwane le-HIV [If you are living with the HI Virus] or have a partner, a family member or a friend who’s HIV positive, Siyayinqoba is for you. We have been talking a lot about antiretrovirals or ARVs, the medicines that fight HIV. Kungoba ama-ARVs akhona kwamanye ama-clinics [ARVS are available in some clinics] and many other clinics will be providing ARVs in the coming months. One of the clinics that has pioneered ARV treatment is Gugulethu Day Hospital. The Siyayinqoba Team iye yayohlola, masibone. {IsiZulu} [went to check it out.]

How an antiretroviral clinic works

Gugulethu, Cape Town

Dr Fareed Abdullah (Deputy Director of Health, Western Cape): The Gugulethu antiretroviral treatment project is a pilot project to learn how to operationalise an antiretroviral programme. In Gugulethu we have learnt which are the best of combinations to use. In Gugulethu we have learnt about how to select the patients.

Dr Khwesi Matoti (Gugulethu Community Health Centre): Njeng’ba sithatha four weeks pham’ba sikunike amachiza ne, i-treatment, siyakufundisa nokufundisa kulo-four weeks leyo. Sikufundisa ngantoni? Sikufundisa ngentsholongwane then sikufundise ngee-drugs ezi ii-ARVs. Uba ziintoni, zisebenza kanjani, kutheni kufuneka ziselwe yaye ziselwa ngumntu otheni, xa ukwesiphi i-stage? And then ziintoni ezenzeka apha kuwe emzimbheni once usele ii-ARVs ofuneke uzijonge, ezizinto kuthiwa zii-side-effects. {IsiZulu} [Because it’s still four weeks before we give you the drugs, we’ll educate you in those four weeks. We’ll teach you about the HI virus, and about the drugs, the ARVs. What they are, how they work and why we must take them, who should be taking them, in what stage to start taking ARVs, and what is happening in your body once you start taking ARVs. You must look at the things we call side-effects.]

Dr Fareed Abdullah: With triple therapy, there is a deeper contact with the community through these treatment counsellors. All ten of them are themselves infected. Some of them are on treatment, and they are there to encourage the patients to take the treatment, to take it regularly, and to deal with any problems they might have.

HIV/AIDS Counsellor: Akufunekanga xa unengxaki ulindele kude kufike la-date yakho ukuze uye kwagqirha. Funeka once ubunengxaki noba kungoku, ufowunele i-counsellor yakho okanye uye kugqirha straight. {IsiXhosa} [When you have a problem you shouldn’t wait until your next doctor’s appointment. Once you have a problem you must phone your counsellor or go straight to the doctor.]

Dr Khwezi Matoti: Now, apha ke into esiyigxininisayo nento ebalulekileyo yinto yoba uba ngaba kuthiwe iipilisi uzuzisele ekuseni ngo-8 uphinde uzisele ebusuku ngo-8, kufuneka uzisele ekuseni ngo-8 then ebusuku ngo-8. Ngoluhlobo ufuneka uzitya ngalo ngoba uba ngaba awuzityi kakuhle, umane uqakatha, then intsholongwane izoziguqula. But uba ngaba awuzityi kakuhle iipilisi zakho awuzukuhla, ubenalento kuthiwa yi-resistance. {IsiXhosa} [Now, the thing to emphasise is this: if we say you must take your pills at eight in the morning, and the other one you take later, at eight in the evening, then you must take it at eight am and at eight pm because if you miss it and you skip and skip and skip, and you don’t take your treatment properly, the HI virus will become resistant. If you don’t take the treatment properly, the virus will not drop down and you will get resistance]

Dr Fareed Abdullah: The only way to learn medicine or nursing is to treat patients, to start with treating patients. You’ll find that within six months, as is the case with Dr Matoti and his staff at Gugulethu, they have become experts providing a very high quality of care at Gugulethu.

Dr Khwezi Matoti: Sizojonga i-weight qho xa usiza apha ke. Simane sijonga qho xa usiza apha 46. {IsiXhosa} [We are going to weigh you every time you come here.]

Onscreen text: Four months later.

Dr Khwezi Matoti: Unjani namhlanje? {IsiXhosa} [How are you?]

Patient: Sikhona kunjani kuwe? {IsiXhosa} [I’m ok, how are you?]

Dr Khwezi Matoti: Sikhona nathi. Ndicela uchophe. Uziphethe iipilisi? {IsiXhosa} [I’m fine. Sit down. Did you bring your pills?]

Patient: Hayi andiziphethanga. {isiXhosa} [No, I didn’t.]

Dr Khwezi Matoti: Awuziphethanga? Ok, uziva njani namhlanje? {IsiXhosa} [You didn’t? Okay. How are you feeling today?]

Patient: Ndiziva ngcono. {IsiXhosa} [Fine.]

Dr Khwezi Matoti: Uziva ngcono noko? Akusafani nakuqala? {IsiXhosa} You’re feeling better? It’s not the same as before?

Patient: Hayi Akusafani nakuqala. {IsiXhosa} [It’s not the same as before.]

Dr Khwezi Matoti: Bekunini na, bekuyi-1st ka-December ne? Uyakhumbula saye satsala igazi mos. Now uba ngaba uyajonga kakuhle apha kungokuya wawuqala utya i-treatment ne? La yayingamajoni omzimbha wakho ayengu-24, uyakhumbula? Echulumancisayo ke into yeyoba nantsiya i-CD4 count yakho and amajoni omzimbha ayi-219, asuka pha ku-24. Asiyivuyeli lo ndawo? Siyayivuyela bekufanele uba sivula itshampayini. Uba ngaba uyakhumbula, i-weight yakho uqala kwakho yayingu-46 and ngelaxesha wawugula nyani then after four months or 16 weeks, wathi 60 kilograms. Masibone uba i-weight yakho ithini namhlanje. Alright, namhlanje iyofika ku-65. So yonyukile ne? Uyatya kakuhle? {IsiXhosa} [Remember you were here on one December? You remember we took your blood? Now if you can see here, this is when you started your treatment. Your CD4 cell count was 24. You remember? After four months of treatment, we drew more blood. And the good news is that your CD4 cell count is 219 from 24. Aren’t you happy? We’re happy. We should be popping champagne now. If you remember, your weight was forty six kilograms when you started treatment; that was when you were very sick. Then, after four months, it went up to sixty kilograms. Let’s see what your weight is today. You’ve reached sixty five kilograms; from sixty to sixty. Hey, you’re fattening up too.]

Support group

Jason Wessenaar: What have been your experiences of antiretroviral therapy? What are the benefits and side-effects?

Lihle Dlamini: Guys, I think these people in Gugulethu are very lucky, because where I come from in Lamontville, there’s no such clinic as this. You know, when I was diagnosed with HIV, I had oral thrush, and it had gone down to the oesophagus, and I also had diarrhoea, and also I was diagnosed with TB. I was feeling very fatigued. My CD4 count was 93, and my viral load was very high, it was actually 1200000. Three months later, the CD4 count has risen up to 375 and the viral load had gone straight down to 290. Ama-side-effects engawa-experience ngales’khathi ngiqala ungena kule-treatment ngaphathwa yikhanda nje for iintsuku ezincanyana. And ngicabanga ukuthi ama-ARVs ayasiza ngempela. {IsiZulu} [And my side-effects I experienced when I started the treatment was a headache which I had for a few days. I think antiretroviral drugs really help, and they played a major role in improving my health.]

Anthony Fernandes: Lihle, my story is so different from yours. When I started taking my antiretrovirals nobody prepared me for the huge shock that these antiretrovirals still has on your body to fight the virus. The usual side-effects, the three months of extreme rashes, headaches, fatigue, nausea, vomiting, diarrhoea. I mean I thought I could write three books of just side-effects. But it was that perseverance all the time of, keep taking it regardless of you’re gonna feel a bit ill or you’re gonna have a headache, I know it will pass. And after three months, I finally pushed through all these side-effects. It just lifted immediately.

Busisiwe Maqungo: Although I’m not on ARVs yet, I think what Lihle said Anthony is they babene-side-effects ezahlukeneyo [experienced different side-effects.] Like from Lihle it took very few days to experience side-effects, with Anthony it was something different. So people need to understand if ubona omnye umntu ekwi-ARVs e-react ngohlobo oluthile {IsiXhosa} [you see someone reacting to ARVs.]

John Vollenhoven: I’m living now my tenth year with HIV, and if it wasn’t for ARVs in my life, I would have been dead now. Here I am sitting as a person, alive and I’m not sick, I can’t remember when I was last at the doctor or a hospital even.

Vuyani Jacobs: The benefits that you get by taking ARVs always outweigh the side-effects. For instance, with my situation when I was losing a lot of memory, I couldn’t finish things. Prudence is laughing at me now. I used to forget people’s names, forget things, and I really, really lost those things. And I was scared, my family was scared, because I was living with HIV openly, I was scared that my community would see my dying of HIV, and I never wanted my community to see me dying of HIV whilst I was living openly with HIV. It actually came at a good point now, now I can actually work on programs, work on projects and finish them, because my memory’s back. Ja, my things is working.

Nomandla Yako: Now people can see that there are side-effects, they can come and go after time. So it is so good. It’s not like you are scaring people, you are telling people, you are showing people that those things come and go after time, and they are being monitored.

Jason Wessenaar: Tla reyeng mabenkeleng. {Sesotho} [We are going to a break] Stay tuned.

Jason Wessenaar: Mmuhi reya ho amohela mona Siyayinqoba Support Group {Sesotho} [Welcome back to Siyayinqoba Support Group] the programme for anyone infected and affected by HIV. We are talking about accessing antiretrovirals in the public hospitals. Nurses play an important role in the ARV programme. We spoke to Sister Lulu Mtishwa and Dr Linda Bekker, from Gug’s Day Hospital.

A model for an antiretroviral clinic

Gugulethu, Cape Town

Dr Karen Cohen (Department of Health, Western Cape): I think you’re all aware of the programme that is running at the Gugulethu Community Health Centre. We have an antiretroviral programme up and running that has been running now for a year. It’s our birthday. And to date we have one hundred and ninety treatment places, so space for a hundred and ninety people with HIV to be treated with antiretrovirals on the programme at the moment. And, at the moment we have a hundred and thirty people who are taking antiretrovirals at Gugulethu Community Health Centre. And people working within the programme are a team. It’s not just a matter of a doctor seeing patients. We have Dr Matoti who is there full-time; we have sisters that work there, Sister Patience and Sister Lulu.

Sister Lulu Mtishwa (Gugulethu Community Health Centre): This is a model; I think it can be copied. And if not copied as is, but tried to mimic whatever this model has provided.

Dr Khwezi Matoti: This clinic, as you know, is situated in the Nyanga district and it’s supposed to be serving all the other clinics in the Nyanga district. As you know, what happens is that, because we have nine or ten clinics in this district, they each have to choose patients that are eligible for antiretrovirals, in other words patients who are in stage 4, or have CD4 counts which are less than 200. Now those patients have to be selected by those clinics, and then sent to this one, in order for us to treat them.

Nombasa Rune: Ndiqale uba involved eGugulethu last year nge-3 ka March because i-CD4 count yam ingaphantsi ko-200. So ndiye ndaqhubeleka endicacisela ugqirha wam uba if ndiyazithatha ii-drugs ndizoncedakala kangakanani na? Also endicacisela nange-side-effects. So ndiye ndabanomdla ke wozithatha ii-drugs kakhulu because bendiyibona i-CD4 count iyehla although bekungekho nto i-serious. Bendi-right ndingenanto. {IsiXhosa} [I started getting involved in Gugulethu last year, on 3 March, because my CD4 count was under 200, that is, it was 137. So my doctor explained to me about the drugs and how I’m going to get help. He also explained the side-effects. So I had the courage to take the drugs because I saw my CD4 count was dropping, although I didn’t have serious problems in terms of weight. I’m normal. There’s nothing wrong.]

Dr Khwezi Matoti: Nombasa, awunazikhalazo? {IsiXhosa} [So Nombasa, any problems?]

Nombasa Rune: Hayi andinazikhalazo because uyandifowunela, uyaya endlini every time ndimfowunela. {IsiXhosa} [No, no complaints, because I just phone her every time and she phones me.]

Nontsikelelo Zwedala (HIV Treatment Counsellor): Ndisebenza apha e-Gugulethu Clinic, ndiyi-counsellor kwi-HIV Treatment Centre eyi-Yanani Crusade. Ndiyawuthanda lomsebenzi ngoba ndinceda abantu aba-HIV positive. Kulithuba elininzi abantu bafile kuba bekungekho treatment. Now that i-treatment ikhona, abantu kufuneka bayitye kakuhle, baphile, bafane nam as ba nam ndiphilile. Sitreyiniwe ngu-Dr Bekker wasitrayinela uba sazi ngee-ARVs, sazi nge-HIV ngokubanzi, sazi nango-positive living. Then safumana ne-counselling kwi-psychologist. {IsiXhosa} [I work here at Gugulethu clinic as a counsellor under HIV treatment centre called Yanani Crusade. I enjoy this work because I’m helping people who are HIV positive. For a long time many people have died because treatment was not available. Now that treatment is available I want people to take their treatment properly and get well like me, because I am healthy now. Dr Bekker trained us. She trained us to know more about antiretrovirals and more about HIV and positive living. Then we also got counselling from a psychologist.]

Dr Linda Gail Bekker (Consultant to the Health Centre): You know we set out as this sort of partnership to say: “Can it be done?” And I think the feasibility is wholeheartedly and resoundingly been shown to be a success. I mean, I think it’s there. I think it can be done. It can be situated firmly within communities at primary healthcare level. There are logistic problems and there are obstacles to overcome.

Dr Karen Cohen: If we look at the figures of how well people are taking tablets in the programme, we do better than anywhere else in the world, and I think people here must be very proud of that.

Dr Khwezi Matoti: I would be a fool to say it’s going to be easy. It’s really not going to be easy and the lessons that have come out of here have to be shared right across the country. You can’t do it as an individual. It’s a team effort.

Support group

Lihle Dlamini: The whole community in Lamontville knows that Lihle is HIV positive, and is very open about her status. Abantu abaningi bayeza bazofuna i-advice and abantu abaningi kuqala bebenalento yokuthi bayesaba ukuthetha ama-ARV drug because bayazi ukuthi a-toxic. So manje bangibona ngales’khathi ngigula and manje bengibona sengimngaka abantu abaningi bayayazi ukuthi ama-ARVs. {IsiXhosa} [Most people come to me for advice and most people are afraid to take antiretroviral drugs because they believe it’s toxic. They saw me get sick and they saw me get well and gain weight. So many people could see that antiretrovirals really do work.]

John Vollenhoven: You just have to carry on with your ARVs, because there’s so much medicine on the market for any kind of side-effect that you have, so people shouldn’t be afraid of taking ARVs.

Jason Wessenaar: What commitment does it take from us for antiretroviral therapy to succeed?

Prudence Mabele: You’re going to have to take them every day, at the right time, and you have to eat, and you have to eat and you also have to believe in your own drugs. That means you have a supporter, if you don’t have a supporter your cell phone is a reminder, which is what I’ve been doing, the notes in my door, bathroom, wherever: “Take your meds”, all of those things. And it’s really, really important to know, what are the side-effects, about your own drugs, and also to know what are your drugs, and to take responsibility yourself.

John Vollenhoven: ARVs maak n groot impak in n mens se immune system.Moenie te lank wag nie, gaan laat toest jou en sien eerste waar jou, hoeveel bloed selle - want dis belangrik. As jy te lank wag gaan jy sterf dan gaan die, die ARVs gaan glad nie help nie. {Afrikaans} [ARVs have a huge impact on one’s immune system. Don’t wait too long, have yourself tested, and see how many immune cells you have – it’s important. If you wait too long, you’ll die and the ARVs won’t help.]

Jason Wessenaar: Sister Lulu and Dr Bekker join us after the break. Stay tuned.

Jason Wessenaar: Welcome back to the Siyayinqoba Support Group and welcome to Sister Mtishwa and Dr Linda Bekker who are here to answer some questions from the Support Group about ARVs.

Busisiwe Maqungo: I’m not on ARVs yet, but I’m just curious because I’m hearing that if you’re on ARVs and you take a decision that you are going on ARVs, you should comply with the whole thing. I just need to know, why is that, because at a later stage I will have to take ARVs?

Dr Linda Gail Bekker: First of all, you don’t have to take just one treatment. You must take at least three different treatments and you’re quite right, they need to be taken at the same time every day for the rest of your life. The reason is that the virus quite easily develops resistance to drugs.

Onscreen text: The HI virus becomes resistant to treatment if it is treated with only one medication at a time.

Dr Linda Gail Bekker: If a person who contains the virus is exposed to only one treatment at any time. So the way we overcome that susceptibility to resistance, that ability for the virus to develop resistance is for it to see more than one treatment at any time. It must see at least three drugs, and those drugs must be taken consistently. If that doesn’t happen, there is a risk that the virus could become resistant.

Onscreen text: You should adhere to your ARV treatment, otherwise the virus will become resistant.

Dr Linda Gail Bekker: And then that set of treatment will no longer work in that situation. The person’s virus will no longer die, even though they’re taking the treatment well. It has implications for your ability to take treatment across the board.

Vuyani Jacobs: There’s a lot of desperation amongst our people, especially now that it’s just about to happen. I remember now, like, a few weeks ago, someone asking me if I can give him some of my medication. And I explained to him carefully that I cannot do that, but I can see that he is part of this whole list that is waiting, and he just feels like desperate to be on ARVs. How do you deal with it in Gugulethu?

Sister Lulu Mtwisha: What is important is that you don’t just come today and say tomorrow you’ll be given the medication. You get into a programme of education at least four weeks before you can get medication, and there you get satisfied that you know the drugs, their side-effects, and in fact how they look like, in fact, from the very word go. And only then can you get treatment.

Vuyani Jacobs: What is the criteria?

Sister Lulu Mtwisha: Our criteria is that at least your CD4 count should be less than 200, and you should be residing in the Nyanga district, and you are preferably antiretroviral naïve; that is you have never had antiretrovirals in your system.

Prudence Mabele: Sister Lulu, yintoni ndithi ndizajonga, umzimbha wam sowutshintshile? Sendibona ndine-curves, ndinesisu kaloku. Ndiphinde futhi ndinamabele nezinqa ezinkulu. So ndibhidekile kanti into yezipilisi isebenza kanjani? {IsiZulu} [Sister Lulu, why is it that when I look at myself I see my body changing? I see my curves, my stomach, my breasts and my bums getting big. I want to know how these pills work.]

Sister Lulu Mtwisha: Kwabanye kudla ngobakho ilunda apha, abenamabele amakhulu…Neempundu, ingakumbi abantu abangoomama. Zonke ii-side-effects ziyabafumana abanye, abanye zingabafumani. Abanye zibathathe ixesha elincinci abanye zibathathe ixesha elide. So njeng’ba singabantu sohlukene … {IsiZulu} [Some people develop fat on the neck and some develop really big breasts and bums, especially to women. It doesn’t happen to everyone because we all known that, people experience different side-effects. Some people get over them quicker than others. We are all different people, and we react differently to some drugs. After all, fashion is changing everyday, and we are in the baggy things today]

Nomandla Yako: If the person has a severe side-effect on Nevirapine, can’t you change to Efavirenz?

Dr Linda Gail Bekker: Starting with any antiretroviral, we know that they have specific side-effects so anybody who starts on treatment will be monitored in a very specific way, and we know that both Nevirapine and Efavirenz have liver toxicity so people will have regular liver function tests done to make sure that they’re not developing liver toxicity.

Sister Lulu Mtwisha: Ukuba uzotya ii-drugs unethemba lokokuba ii-drugs zizozibulala iintsholongwana, yes zizozibulala kodwa xa uzawuthi-engage neqabane lakho ulale nalo enganxibanga i-condom ithetha uba uzawumane ufumana qho i-supply ye-HIV. Particularly xa naye ene-HIV, nawe une-HIV.{IsiXhosa} [If you are going to take the drugs with the hope of killing the virus, yes they will kill the virus, but if you are going to engage in unprotected sex, you will continue getting a supply of HIV, particularly when you and your partner are both HIV positive] it’s not really good.

Jason Wessenaar: Say I’m about to go on ARVs, and I’ve gone through the lessons about pros and cons about taking ARVs, what other things do I have to do, or what other advice would you give me as somebody who is about to go on ARVs?

Sister Lulu Mtwisha: You need to have somebody knowing what’s happening, so that you get the support, because you are going to need that support. There is no way you can take the treatment under a concealed environment. You need to have somebody to talk to, not that you need some help, but somebody to give a listening ear, that’s all, and it soothes you, it takes the load off the problems that you had.

Jason Wessenaar: Mhlawumbi ndisela i-alcohol, Mhlawumbi, {IsiXhosa} [Let’s say I drink alcohol,] maybe every week what would you say, what advice would you give me?

Sister Lulu Mtwisha: Utywala xa ubusela, bucolwa es’bindini…xa uzawuthi uzitya i-ARVs ezicolwa es’bindini uphinde usele utywala, uthi masithini isibindi sakho? so siyacela uba abantu bazame ukuba xa ezawuqala ii-ARVs azame into yoba ahlukane notywala {IsiXhosa} [Alcohol will poison your liver. It’s overtaxing, and then quickly you can go into liver failure. If you are going to be taking ARVs that are toxic to the liver and at the same time drink alcohol that is poisonous to the liver. How will your liver handle it? We ask people that when they are going to start with the antiretrovirals they must try to abstain from alcohol completely, if you are serious with your life]

Jason Wessenaar: So, if your CD4 cell count is below 200, or you have had a serious illness, which doctors call an AIDS defining illness, like PCP pneumonia then you should be on ARVs. Thank you to Sister Lulu, and Dr Bekker and you at home.

Jason Wessenaar: Siyabulela Sister Lulu, the Support Group nababukeli ekhaya. {IsiZulu} Thank you Sister Lulu, the Support Group and the views at home.Things we should remember are:

1. If you are HIV positive, go for a CD4 cell count and viral load test.
2. You should begin ART if your CD4 cell count is 200 or less.
3. Take your medicines at the right time every day for the rest of your life.
4. Don’t be afraid of side-effects; they can be managed effectively.

We hope you enjoyed the show and are feeling the Siyayinqoba spirit. We value your questions and comments. If you have any questions for any of the support group members or for Dr Nombulelo our resident doctor, please contact us on the numbers on your screen now. Join us again next week on the Siyayinqoba Beat It! Support Group. Till next week, stay healthy and remember that together we can Beat It!

< previous episode | next episode >