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Beat It! 2002 Episode 7

In this episode members of the Support Group shared their experiences of antiretrovirals. Dr Nombulelo took this further by illustrating the benefits of these drugs and the Special Report looked at the success of the MSF ARV pilot programme in Khayelitsha. The episode made an impassioned call for the roll-out of antiretroviral therapy nationally.

Nombeko Mpongo: Welcome to Beat It! I’m Nombeko Mpongo.

Vuyani Jacobs: And I’m Vuyani Jacobs. Beat It! is your guide to better living with HIV and AIDS. This week we introduce the topic of antiretrovirals and show the difference these medicines can make to people living with HIV and AIDS.

Nombeko Mpongo: The support group talks about their experiences of antiretroviral therapy, that’s ARVs in short; that’s the medicines that can control HIV in our bodies.

Vuyani Jacobs: Nombeko, do you know that I was down to 40 kgs and was loosing my memory before I started on antiretroviral therapy, but I’m better now. Come guys lets go see the Support Group and share our experiences.

Nontsikelelo Zwedala - Antiretroviral therapy

Nontsikelelo Zwedala: Phambi ukuba ndiqale ukusebezisa amayeza. Amajoni wami womzimba wangaphasi ku 14 and ubungakhanani betshologwane bekungu three million.Ndandise ndigula kakhulu, ndaba ne TB khabini, iTB yayi kumzimba wonke engeko emaphungeni yayincancisa ukuba ndine AIDS. Ndandine rash umzimba wonke. Ndandibityile. Esikhalini ndandi ngo 42 kg. [Before I started using these medicines, my CD4 count was 14 and my viral load was three million. I was very sick and I had TB twice. Not only in the lungs, but all over the body, which showed it was AIDS. I had a rash all over the body. I was thin. I weighed 42 kg.] I was worried because I was so sick I think that I would die anytime. But now I am healthy and I’m on antiretrovirals. And ekuyiqaleni kwami yandincenda ngoba ngoku naku ndiphakamile ndiphilile. {IsiXhosa} [When I started taking it, it helped me, because here I am now, I am healthy.] If I can get antiretrovirals for many years, I can be there for him because I love him. He is the only one. He is the only one child I have.

Nontsikelelo Zwedala: Ndandiyazi ukuba into ukuba ndisozifumana iside-effects okanye iziphumo ezi bezinganjongwa kutreatment. Kodwa ke into eyenzakileyo yikuba indincede ngoba igqirha bakwazile ukuzinjonga bazinonophele ukuze ndide ndibendiphilile ndibekulendawa andikuyo. So lento ayithethi umto xa sekulate angina kuqala itreatment, angayiqala kodwa ogqirha babenomnonophela kuye kwezela ukuba bambone xa itreatment yonakalisa emzimbeni wakhe. {IsiXhosa} [I knew I could get side effects, or unexpected results from the treatment, but it helped me because the doctor looked after me until now that I’m healthy. So it doesn’t mean that a person can’t start treatment late. The doctors must observe him or her so they can see when the treatment does harm.]

Beat It! Support Group

Sindiswa Godwana: Eh, isitori saka Nontsikelelo guys eh, Sipucuke kakhulu kum ngoba kalokhu uNontsikelelo utsho, uthibekane AIDS, so abantu abaninzi umtu ucinga xa aneAIDS ubheke emangwabeni, uready ukuba abheke engwabeni kanti abantu fanele bayazi ukuba noba unayo iAIDS unazo irights ufumane ezidrugs. Ezidrugs zizakwazi zizakwazi ukuba zikuphindisele kwistage seHIV. Ufane like nawonke umtu ophilayo ubomi ubunde. Funeka siyazile lento leyo. {IsiXhosa} [Nontsikelelo’s story is important to me. Because Nontsikelelo says she has AIDS and to many people if you have AIDS, you’re ready for the grave. People must know that even if you have AIDS, you have the right to get these drugs. They will push you back to the HIV stage. You will be like any other person and live a long life. We must know that.]

Anthony Fernandes: When I started taking my medicine my viral load came, in three weeks time it was undetectable. My CD4 count shot up as well but due to hepatitis which I got I had to be taken off the medication immediately because it really started attacking my liver functions and pancreas. So, and it shot right back up to 27 000 again which was just living proof to me, you know, that this medicine really works and the moment when I started to continue it again it was undetectable again. And up to four years later it still is.

Mathew Damane: Clarifying the point of the “undetectability”, when we talk of the “undetectability” that means the HIV virus is below 125 copies of the HIV and that does not mean you are HIV negative. You do still, you do have the HIV virus still in your body but it’s just that below 125.

Sandra Merino: Ek was baie siek; ek’t diarrhoea gehet, ek het thrush gehet in my keel in en my diarrhoea was so erg dat ek nie kon self opgestaan he tom toilet toe te gaan nie, wat ek myself nat gemaak het en na dat ek met die antivirals begin het, het ek baie gesond, gou gesond geraak. En ek dink dis iets goed dat ’n mens op die ‘trials’ is of enige ander soorte medikasie. Dit kan ’n mens help om jou ‘immune system’ op te bou. {Afrikaans} [I was very sick. I had thrush in my throat. My diarrhoea was so bad, I couldn’t get up to go to the toilet because I would have soiled myself. After going on antiretrovirals, I got well very quickly. I think it’s a good thing being on a drug trial or another from of medication. It can help you build up one’s immune system.]

Faghmeda Miller: I myself, I was very ill. I had TB and I had a constant fever and I was just forever ill and I didn’t felt like carrying on living. So when my doctor advised me to go on the medication I actually had no choice and especially when he explained to me that when you are in this stage of AIDS you know you can actually reverse it back to HIV. And that is basically what happened to me. So I just want to say to you people its okay to be on the medication. Of course you get side effects but with any other medication you do get side effects in any case.

Faghmeda Miller: This one is called 3TC; I take this twice a day. And this one is called Zerit, which I also take twice a day. This one is called Stocrin200 but this one I only take at night because it makes me really drowsy and I still need to drive home, so I won’t take this now, I’ll take it later on.

Bongiwe Mkhutyukelwa: Which is the exact time for one to take, start taking the treatment given the facts that you don’t have to wait to long and you don’t have to start it too early?

Vuyani Jacobs: When your CD4 count at least is less than 200 antiretrovirals push it down, the viral load, and actually pushes up the CD4 count and it is quite important that people shouldn’t start quite too early. The virus itself becomes so much used to that antiretrovirals that it doesn’t work out quite well.

Sindiswa Godwana: Last year in February, the doctor told me that my CD4 count is 250 then I go to the doctor and I told him that I want to go for trials. Then the doctor checked me, checked blood; took blood from me and checked everything. And he said okay I can go for trials. And the reason why I go for trials when my CD4 count was 250 is this: I know I have a right to health and I know that if the drugs are resistant to me, they should change the drugs to another drugs so that I can live a longer life, you see. But I want to show the people that you can go for treatment or for trials even before you can experience the infections.

Prudence Mabele: I believe we know that our country is a third world country and we don’t have drugs everywhere so we need to give the children the chance to get drugs and also we need to make sure that those who need them most, especially those who are sick with under 200 cell count they can also be the first priority to getting the medicine. So positive living is quite important; boosting your immune system with healthy living, eating healthy, taking vitamins, sleeping normal and ordinary hours. Also working, thinking positive ’cause depression also adds into what is happening within our immune systems.

Vuyani Jacobs: Because of desperaity, desperation of people, people go out there and buy a single drug because they can only afford one single drug and think that the drug can actually work within them and it’s totally wrong.

Mathew Damane: Into abalulekile xana ungomtu osebenzisa ezidrugs, usebenzise ne triple theraphy. Because ndicinga mna akukho wise into ba usebenzise idrugs izibini neone because sometimes awu improve in terms of iviral load yakho ayihli. If uqalile ukuyisebenzisa uzayizebenzisa xeshanyana once uqhele umzimba wanko ayisayenzi lento ufanele uyenzile, iqhelana nomzimba the results inyuke iviral load kwenzeke lento ayenzakayo. Kanti kubalulekile uzisebinzise zonthantu zizokwazi ukusebenza emzimbeni wanko ingohlobo ulufanekileyo loba ziblokhe azinto izithile emzimbeni wanko, uphindaphindana kwetshologwane nalopho engenayo khona apha itshitshatshina kohna ngexa yobu active bayo. {IsiXhosa} [It is important, if you use these drugs, you must use the triple therapy. I think it is not wise to use two or one drug, because you don’t improve. Your viral load does not drop. If you start using it, you’ll use it for a short period and once it gets used to your body, it doesn’t do what it’s supposed to, and the viral load goes up and anything may happen. It’s important that you use all three so they can work properly. They can block certain things in your body: the multiplication of the virus and it’s changing because of it being active.]

Bongiwe Mkhutyukelwa: Divumelana noMathew khulento ayithethayo, yeyokuba umtu angathengi idrugs nomakuphina? Like kublack market. Medical aid ziyazi kupha ezidrugs but idrugs zabo azikho monitored. Whereas if uthatha izi drugs, itreatment therapy but fanela umonithwe ngugqirha. Like azokwazi ukutest ukuba zisebenza kangakanani kanjani. {IsiXhosa} [I agree with Mathew that people mustn’t just buy drugs anywhere, like the blackmarket. Medical AIDS do supply these drugs but their drugs are not monitored. Whereas, if you get treatment, you are monitored by doctors. So they can test how effective they are.]

Vuyani Jacobs: Antiretroviral therapies are highly active they must be clearly monitored by a doctor and doctors must take responsibilities when they actually administer these drugs to people.

Nombeko Mpongo: You are back with Beat It! I’m not on therapy because I don’t need it yet but it was inspiring to see how ARVs are giving new life to people who were dying. In future programmes we are going to talk about the side effects and other problems that comes with ARVs.

Vuyani Jacobs: Next up is Dr Nombulelo who talks about the difference it makes to her as a doctor to see her patients getting their lives back when they go on ARVs.

Dr Nombulelo Madala's consulting room

Dr Nombulelo Madala (HIV/AIDS community doctor): Molweni ke ekhaya. Ngu Dr Nombulelo iHIV community doctor yenu. {IsiXhosa} [Hello to you at home. I’m Doctor Nombulelo your HIV/AIDS community doctor.] Thanks for watching. One of the stories that have a happy ending for me in my experience as an HIV community doctor is that of a 22 year old patient, I will call him Sipho. In the year 2000 Sipho was very, very sick with different opportunistic infections and he was in and out of hospital. This was a very, very sad time for Sipho and his family and for us in the clinic. He thought he was dying and decided to leave his job. He was entered into one of the programmes that test antiretroviral drugs subsequent to that. In this programmes a person is given antiretroviral drugs free of charge while they are being tested. On the antiretroviral drugs Sipho’s condition improved tremendously and he literally stood up from what he thought was his death bed. Antiretroviral drugs act directly by blocking the path of HIV as it tries to attack the body. The drugs don’t kill HIV virus itself, but they keep the virus at such low levels that the immune system of the person can recover to such an extent that it can avoid the person easily getting infections and getting ill. In this way a person can stay relatively healthy and have a fruitful life for a long time. This drugs do have side effects but most of the side effects can be managed by a doctor. At the moment antiretroviral drugs are not available at our clinics. What we are currently doing is trying to keep our HIV positive patients as healthy as is possible for as long as possible. This we do by making sure that they come for regular check ups. If we detect that a person is getting a opportunistic infection or any illness we try and treat it early and with the right medication. Unfortunately as soon as a person enters the last stage, which is called AIDS, it becomes very difficult to keep them healthy. Usually at this stage opportunistic infections hit hard and they hit very often. It is also not uncommon for a person who has AIDS to have more than one opportunistic infection at the same time. This is a very sad time for the patient, the patient’s family, the doctor and the nurse and it is filled with hopelessness. What would help us is if antiretroviral drugs were available in the clinics. These drugs are unfortunately at this moment very expensive. The high price of this drugs is the main reason that they are not available in our clinics and that they are not available to the general population in this country. What would open access to ARVs for most of our people is if the drug companies could lower the prices of antiretroviral drugs; if employers and medical aid schemes could take a more responsive role and a more proactive role; also if the state were to take advantage of any lowering of the drug prices and also if the state could please start pilot programmes on antiretroviral treatment. This is Dr Nombulelo Madala for today; I will see you again next time. Stay healthy.

Nombeko Mpongo: Nimbukele iBeat It! Namkelekile amakhaya. {IsiXhosa} [You are watching Beat It! Welcome every one at home]. The first antiretroviral pilot site in South Africa was started by MSF, that is Doctors Without Borders, in Khayelitsha, Cape Town. In this weeks Special Report we are seeing how they are making ARV therapy available and giving life to people who would otherwise have died.

Vuyani Jacobs: Hey Nombeko, do you know that I get my ARV through the pilot site in Khayelitsha? We are sometimes told that ARVs are too complicated for poor communities. In Khayelitsha we can see how nurses and patients work together to make the ARV programme a success.

Special Report - Khayelitsha ARV programme

Thobani Ncapai: I found that I’m HIV positive. It was not easy to accept that because when I was diagnosed HIV positive I didn’t get ecounselling, I was just told that: “You are HIV positive and you are going to die.” I was very sick having ediarrhoea, losing weight and all the time when I wake up in the morning I decided to go back into my bed and sleep again. It was difficult to me to do everything; to wash myself, even my clothes and to cook for me and to work and to walk the long distance. So, I contact my doctor and my doctor told me to use ARVs so as to boost my immune system.

Dr Hermann Reuter (MSF, Doctors Without Borders): We see before we started here in Khayelitsha, providing antiretrovirals, nobody in South Africa in the public health had access to these antiretrovirals. If you were on a medical aid the medical aid might pay for them, but in the public health people couldn’t get these medicines.

Thobani Ncapai: I wake up early in the morning; I take a train by twenty to five; I go to Epping and buy these stuff, selling for the people.

Dr Hermann Reuter: We’re providing antiretrovirals to people with HIV who need it. Um, we’ve got some criteria, in terms of the medical condition of the patient, for instance the CD4 count must be lower than 200. For us it is clear that there is no benefit of starting the antiretrovirals while the virus is still in the early stage. We use blood tests too monitor the development of the disease and the most common test used is the CD4 count, which actually measures the strength of the immune system and when we see that the CD4 count goes below 200 we can basically see that this is an indication of the virus getting stronger and that is the stage at which we recommend patients from starting antiretrovirals.

Thobani Ncapai: I was very sick because my CD4 count was 174, my viral load was 240 000.

Sister Veliswa Labatala (MSF Clinic): Abantu baseKhayelitsha abazityayo, bazitya kakhuhle futhi. [Khayelitsha people take treatment well.] Medically they responded very well because most of them they are doing exactly what is expected to do xa ngaba [when] you are on ARVs. We look at compliance, one. We are dealing abantu apha [with people here] who are illiterate; who cannot read, who cannot write but who are doing it in such a manner that you wonder nyani ichondo yeveli [natural intelligence does work]. One, as long as you explain the whole thing thorough to a person, then umtu uyayiyenza [the person will do it]. {IsiXhosa}

Thobani Ncapai: I was taking AZT, 3TC combination and Nevirapine. Since I’ve started on ARVs I’m feeling ok. I didn’t have any side effects since I’ve started last year.

Dr Hermann Reuter: From the pharmaceutical companies’ side we often hear the argument they don’t want to come down with the prices because even if they would give the medicines for free African governments don’t know how to use them, there’s not the infrastructure. And we’re basically proving that the infrastructure exists. I mean we didn’t add anything to this clinic, except the know-how. It’s a primary care health clinic like you find in any township and these medicines can be given under these circumstances, in fact we get very good results under these circumstances. We don’t have to treat all people immediately, only the people who are sick with HIV have to be treated. However by treating those people we actually save money. This has been proved in Brazil where a 100 000 people are being treated with antiretrovirals and we can show it with our own experience in Khayelitsha. Because when we don’t treat people, we have to refer the person often to hospital, where they have to be hospitalised and the hospitilisation is much more expensive than the medicines that we use. For instance one nights sleeping at a hospital is about five hundred rands and people get many infections if we don’t treat them with antiretrovirals. By using antiretrovirals we have cut down the rate of TB by 85% amongst our patients. And we’ve cut down the incidences of opportunistic infections, of how many times the person gets an HIV related infection, by 67%.

First support group member (MSF ARV Pilot Support Group): Counselling is the best medication, even to myself. I become well when I see other people who are HIV positive. I didn’t know that, I thought I was the only person who is HIV. So, I met other people who are HIV and then I became well and they are beautiful as I’m beautiful now.

Second support group member (MSF ARV Pilot Support Group): Ekuqalani bandincancisela ngoba bendingazazi ukuba ndingumtu oHIV positive. Bandi counsela, ndagula. Bandixelela nge treatment ukuba mandiyitye kanjani. Ndalandela ngokwemithetho yabi ke, ukuba kunde kwangoku lomtu ndinguye, ndiphilile, yimqathango yabo. {IsiXhosa} [In the beginning they explained to me that I’m HIV positive. They counselled me first, then I fell sick. They told me about treatment and how to take it. I followed their instructions until now that I am who I am, healthy. It’s because of their rules.]

Third support group member (MSF ARV Pilot Support Group): Kwenzeka ntoni xa ndithe ndayilibala noba yidose eyi one? Ndimane ndilibala ledose eyi one. Ndinga seli ngaladlela ndifanele kusela ngayo, yintoni eyenzekayo, eziphi iziphumo ezifanele ndizilindele. {IsiXhosa} [What happens if I’ve forgotten one dose, and keep on forgetting one dose? What happens if I do not take treatment as prescribed, what results must I expect?]

First support group member: Xa ungayi thathi itreatment yako ngedlela efanekileyo, fanele ulindelu ukuthi iCD4 count yakho yehla and isonohamba ihambe ethubeni itreatment ingasebenzi emzimbeni iyekhe ukusebenza. Uphinde uqale ekuqaleni ugule, ivirus yenyukile. {IsiXhosa} [If you don’t take your treatment properly, your CD4 count decreases and treatment may stop working. When it stops working, you’ll fall sick again because your virus has gone up.]

Thobani Ncapai: Uba usele ngo nine, sela ngo nine, uba usele ngo nine and wasela ngo one, so azizo qhuba ngedlela ezifanele ukuqhuba ngayo. {IsiXhosa} [If you take it at nine, take it at nine. If you take it at nine and then at one it won’t work properly.]

Third support group member: How do you feel when somebody pass away due the side effects of ARVs.

First support group member: When you have got side effect, you have to go to the doctor immediately so that it can be treated so soon and it is treated. And even myself, I had only rash on my arms that was only side effect that I had.

Dr Hermann Reuter: At our clinics in Khayelitsha we can only treat a small number of people; at the moment we’ve got funding partly from Doctors without Borders, partly from the Western Cape government for providing antiretrovirals for 400 patients. Seen as a pool of four to five million people living with HIV in South Africa it seems like just touching a drop in the ocean.

Sister Veliswa Labatala: Kalokhu ezi antiretrivirals zezabantu abanga kwaziyo ukuyo fikeleka kwim’ngangato othile we mali. For instance umuntu mhalmbe angazikwazi ukubhatala ongaphangeliyo. Nxawuphangela nook asikwazi ukukunika mhlambu nomvuzo wakho uthe gxagxa unokwazi ukuba ne medical aid. {IsiXhosa} [These antiretrovirals are for people who cannot afford certain amounts of money. A person who’ll be unable to pay, an unemployed person. If you work, we cannot give them to you, because even if you earn enough, you can afford medical aid.]

Thobani Ncapai: I think the government should think about the people who are HIV positive and who are not working. If you are HIV positive and you are not working you cannot manage the ARVs because before you take your medication you supposed to have enough food.

Dr Hermann Reuter: You have to start with pilot sites like this one in every province; the learning and know-how, getting to treat some people and then obviously within the next two, three years we should move towards national rollout of antiretroviral programmes. But I think we should put our investment now into training nurses, into training doctors in proper HIV management and I think that is where the big investment must go at the moment. That’s what I think the pilot sites are important for: to use them as a training school for your health professionals.

Thobani Ncapai: Other people thinks that when you are HIV positive you’re supposed to sleep in your bed. I don’t think it’s like that. I’m on the way to my dreams now because when I was at school, I was thinking about the business, to be a business man. I’m doing fine in my job ’cause I’m fit and I’m doing everything.

Dr Hermann Reuter: People change their attitudes and I mean that’s an important part of an antiretroviral programme, is to change attitudes and to get people enthusiastic about: there is hope with HIV, it’s not just despair. We don’t need to invest in home-based care, we don’t need to invest in hospices, we need to invest in proper clinics, we need to train our nurses to treat HIV.

Thobani Ncapai: My life really changed, because I feel ok and I’m strong like other people.

Nombeko Mpongo: The ARV pilot programme shows that there is no reason why these medicines should not be available to all those who need them. Instead of having many people sick with HIV filling up the hospitals, people on antiretrovirals can go back to work and live full and productive lives. We cannot allow the right to live to be reserved for people who can afford to pay for it. Surely we all have an equal right to life.

Vuyani Jacobs: You’re absolutely right, Nombeko. It is important to understand that ARVs are not a cure for HIV they can make HIV a manageable condition like diabetes or high blood pressure, which also require life long medication.

Nombeko Mpongo: And as you said they do have side effects, but that’s the subject of another programme. That’s our show for this week; I hope you find it inspiring.

Vuyani Jacobs: Please give us your thoughts on our show by contacting us on the numbers on your screen.

Nombeko Mpongo: Next week we stay with the subject of antiretrovirals; this time we look at antiretrovirals and children and talk to Zackie Achmat and others about the importance of national ARV pilot sites.

Vuyani Jacobs: You can catch the repeat broadcast of this programme on Sunday at half past eleven and we’ll be back with you next week on e. Until then remember: Together we can Beat It!

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