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Siyayinqoba Beat It! 2004 Episode 1 – Opportunistic Infections
This 2004 Siyayinqoba Beat It! series was broadcast on SABC1. With Jason Wessenaar as the presenter, this fourth series’ Support Group was comprised of some old and some new members. Once again Dr Nombulelo Madala was the resident doctor. At the end of each episode Jason summarised each episode’s content with a ‘Things we should remember’ section. In this first episode the team looked at opportunistic infections and the need to treat them as soon as possible. It went on to show the benefits of being treatment literate: Treatment literacy allows you to demand the right drugs; the drugs that will work.
Jason Wessenaar: Molweni, siyanamukela kuSiyayinqoba Beat It! Support Group. Igama lam ngu-Jason. [Hello. Welcome to the Siyayinqoba Beat It! Support Group. My name is Jason.] I am living with HIV. Every week I get together with other people living with HIV in the Siyayinqoba Support Group, to talk about issues that affect us, our partners, our family members and friends. So, if you’re living with HIV, or know someone who is living with HIV, this programme is for you. Today, we’re talking about one of the most important things you need to know if you’re living with HIV; treating opportunistic infections. Uma amasoje wethu omzimba angasebensi kakuhle. {IsiXhosa} [These are infections we get because our immune system is not working well.] The Siyayinqoba team went to Indwe to visit Noluntu Komani, who is suffering from oral thrush. Let’s see what they found out.
Special Report - Where’s the fluconazole?
Indwe, Eastern Cape
Narrator: The Siyayinqoba team went to Indwe in the Transkei where we met up with Zoliswa, a treatment activist.
Zoliswa Magweju: I didn’t sleep last night. I started writing a report to my colleagues out there: I would like to come as soon as I can to Indwe to start our education programme in this place… People here need some help. They are our people. Our people are dying.
Narrator: Together with Zoliswa we met Noluntu, who is HIV positive. Noluntu has been suffering from severe thrush. Oral thrush is an opportunistic infection of HIV which affects the mouth and can spread to the food pipe; making it hard to swallow. Noluntu’s thrush was so bad she could hardly speak to us.
Zoliswa Magweju: Ingaba yi-treatment yantoni le ayisebenzisayo?{isiXhosa} [What is the name of the treatment she’s taking?]
Older woman: Akana-treatment ngoku. {IsiXhosa} [She doesn’t have any treatment.]
Another woman: Iinto azisebenzisayo yi-garlic ne-lemon juice. Akananto i-straight ingenye. {IsiXhosa} [The only thing she uses is garlic and lemon juice. There’s nothing she’s using actually.]
Zoliswa Magweju: Bekufanele nje apha ezibhedlele nasezikliniki zikhona iipilisi. Zikhona iipilisi ezinceda lento anayo kuthiwa yi-fluconazole. Ezoplilisi zikhona, zikhutshwa nje mahala azithengiswa. {IsiXhosa} [You are supposed, here in the hospitals and clinics, to have the pills. These pills are called fluconazole. The government got these pills and they give them free of charge.]
Dr Zimamele Fuzani (District Surgeon): When I first saw Noluntu Komani, her condition so serious. She couldn’t walk, she couldn’t talk, she couldn’t swallow.
Zoliswa Magweju: From there I decided to go to hospital, to see the sisters, how do they treat people. I met a chief professional nurse. They took me for the rounds around the hospital.
Zoliswa Magweju: Why don’t you order the necessary medication so that you can help, if we only know the reason why?
Sister Buyiswa Siquqo (Chief Professional Nurse): We must try and sort it out. We didn’t know. And they are effective, really, as we hear from the books.
Zoliswa Magweju: We met the pharmacist, together with the medical manager. I asked her why doesn’t she have the fluconazole….The pharmacist said:
Getruida Barry (Pharmacist): We know about it, but… the government didn’t tell us now, do you know, to order it, and that’s that.
Zoliswa Magweju: This is treatment for opportunistic infections. Each and every opportunistic infection is treated. No patient has to be sent home to die because there’s no treatment for opportunistic infections. What I saw here was so painful to me and knowing that people are dying and that there’s nothing that can be done. Treatment are there. There is treatment, it is there. By law, it is there. It has to be distributed to all of the hospitals for our people. But in some hospitals it’s not there. For the reason I don’t understand why it is not there in this hospital.
K. Labuschagne (Medical Manager): Nobody let us know about this, so.., but we’re going to do something now, ja, ja.
Zoliswa Magweju: This treatment for opportunistic infections should be here next time when I come here.
Sister Buyiswa Siquqo: You can be very glad, because there is that…
Zoliswa Magweju: They promised to call their supervisors and ask why, are they kept in the dark.
Narrator: The Patients’ Rights Charter, the South African Constitution guarantees the right of access to healthcare for all. Key rights in the charter include: Every citizen has the right to participate in the development of health policy. Everyone has a right to treatment and rehabilitation. You also have the right to confidentiality and privacy, informed consent for any medical procedure, and everyone has the right to complain about healthcare services, and to receive a full response.
Support group
John Vollenhoven: That person could have died if she hadn’t got that fluconazole, and that is why we should inform our hospitals and our clinics to get all the medicine that a HIV person needs.
Anthony Fernandes: Not only is there the correct medicine to use for HIV opportunistic infections, but there’s homemade remedies that people use. People need to tell each other and to inform them that there’s proper medication for HIV, as there’s proper medication for having a cold or flu.
Onscreen text accompanied by narrator: Why do people with HIV need treatment literacy?
Bonile Peter: In the case of the lady there, um, I got the sense that she didn’t know what she was supposed to get, so it’s even more crucial for us, as people with HIV, to be able to know these medicines that we’re supposed to get in hospitals.
Lihle Dlamini: I had thrush, and I didn’t even know I had to use fluconazole. And I went to the clinic, and they kept on giving me Nyastatin, several times, until my aunty who is a doctor interfered, and actually had to force the doctor in the hospital which I was admitted in, to provide me with fluconazole.
Onscreen text states: Nyastatin is the correct first treatment for thrush. Fluconazole should be used if thrush persists for more than five days.
Lihle Dlamini: It’s not that they didn’t have it, it’s just that they didn’t want to give it to me, because they knew I knew nothing about it. And after having had that for a few days, I could actually eat and talk properly. And it did help me a lot.
Jason Wessenaar: Ho bohlokwa hore motho ha a nale ditshwaetso tsa mahloko a monyetla, ntho engwe le engwe e hlahellang mo mmeleng wa hae a ilo ho e oka ka pele. Hobane ho bohlokwa ho oka ditshwaetso tsa mahloko a monyetla jwalo ka atla, ntho engwe le engwe e hlahellang mo mmeleng hore o seka wa diehisa tshepetso. Re bone hore Noluntu o sotlehile haholo hobane onne a sa tsebe hore angke eng. Ho bohlokwa hore batho ba ba phelang ka HIV hore ha ditshwaetso tsa mahloko a monyetla di hlahella, la e le eng ntho e hlile hore ha yaka ya hlahela, ha a soka a e bona before. Ha o hlahela ntho ngwe a ye tliniking hore a thole bo oki ba ditshwaetso tsa mahloko a monyetla e hlahelang. {SeSotho} [It’s important that when someone has an opportunistic infection, they treat it immediately, because it’s important to treat OIs as they come, whatever of it. Noluntu suffered a lot because she didn’t know what to take. It’s important that people living with HIV, treat their infections, even if it’s something they haven’t had before. When something appears, go to the clinic for treatment.]
Busisiwe Maqungo: No matter how small it is, with your immune system being compromised, HIV positive person, you need to run to the clinic in the first sight of OIs.
Lihle Dlamini: Abantu bayaya esibhedlele for i-treatment or for ama-opportunistic infections. [People do go to hospitals for treatment of OIs] and when they have got the wrong medication, the person says, ‘No, this medication is not working for me.’ And she stops or he stops using that medication, and goes to another hospital, and doesn’t mention that ‘I have been to another hospital and they gave me this’. And in another hospital they give you the same medication, and you don’t even know what this medication is, and it’s not working and you say: “Ag, ayisebenzi vele lento.” {IsiZulu} [“Ag, this thing doesn’t work, anyway.”] And people just stay at home and they die unnecessarily, you know. It is important that, if a medication doesn’t work on you, you have to go back to the very same hospital and tell them that: “Guys, you see, you gave me this medication and I don’t think it is working. Could you please give me something else that will help me.”
Busiswe Maqungo: We need to work together, we need to be co-operative, that’s the only thing. And if it doesn’t work, go back to them, tell them that this is not working. “Can you give me something else?” Just like that.
Vuyani Jacobs: And I mean, for me, I like public hospitals much more. Even waiting in the queue, doesn’t matter, because, you see, I feel comfortable having this whole record of mine in one place. That three months, I had that, and now I’m having that. See, if we as people with HIV use the same healthcare centres, it will be easy for us to be referred to start on antiretrovirals when it needed to be.
John Vollenhoven: Voor dat ek my HIV status geken het, het ek ‘shingles’ gehet, die Afrikaanse woord is gordelroos, daarvoor en dit was baie peinluk, en ek het toe dokter toe gegaan. En vir my was dit nogal ’n skok om te hoor wat ek ge… agterna hoor laat gordelroos en HIV gaan gepart. Want dit is een van HIV se opportunieste infeksies wat jy kry as jy HIV is. En toe het ek my gaan toets en toe sê dit nogal ja ek het HIV gehet.] {Afrikaans} [Before I knew my HIV status, I had shingles. It was very painful. So I went to the doctor. I was quite shocked to learn that HIV and shingles go together. It’s one of the opportunistic infections you get if you have HIV. So I had myself tested and discovered that I have HIV.]
Jason Wessenaar: After the break we talk more about the treatment of OIs, we’ll be back.
Jason Wessenaar: Welcome back to the Siyayinqoba Support Group, the programme for everyone infected and affected by HIV. We are talking about the importance of treating opportunistic infections. The Siyayinqoba team visited Indwe a few months later, to see what had happened to Noluntu.
The fluconazole is here!
Indwe, Eastern Cape
Narrator: Two months later we went back to Indwe to find out if the local hospital kept their promise and started providing treatment for OIs of HIV.
Sister Buyiswa Siquqo: By using fluconazole, yes, for thrush it’s very good and it’s effective. Patients, once he has taken it, he also develop appetite. He started to have more appetite. So it was very effective, we are so happy to have it.
Narrator: We also paid a visit to Noluntu and her doctor, to see how she was doing.
Dr Zimamele Fuzani (District Surgeon): Molweni, ninjani mama? {IsiXhosa} [Good morning. How are you, mama?]
Noluntu: Molo tata. Siyaphila, akhonto ninjani nina? {IsiXhosa} [We are fine and how are you?]
Dr Zimamele Fuzani: Sikhona nathi akhonto. Nawe Noluntu uphilile? [I’m fine too. And even you, Noluntu?]
Noluntu: Hayi nam ndiphilile, akhonto. {IsiXhosa} [Yes, I’m fine.]
Dr Zimamele Fuzani: Thyini, ndikugqibele noko impilo ikuhlupha, kunjani namhlanje? [When I saw you last, you were so ill. How are you today?]
Noluntu: Hayi noko kubhetele.{IsiXhosa} [I’m better.]
Dr Zimamele Fuzani: As soon as we had fluconazole supplied to us, she did get her first course of medication.
Dr Zimamele Fuzani: Heke I-blood pressure yakho noko ibhetele, ayonyukanga. Noko ngoku kuvakala kubhetele. Phefumla. Ezipilisi zibutshintshile ubomi bakho. {IsiXhosa} [Your blood pressure is improving a lot. You are better now. Breathe. These pills have changed your life.]
Bakunjani Komani (Noluntu’s husband): Ziphi ngoku? Bezilapha nje. Bamb’koba ezipilisi azifumane, ebengakwazi ukwenza kwanto. Ebengumntu okhala ngomqala, ukutya engakwazi ukuginya. Engatyi, kungekho nto ayenzayo, ibingumntu ohleli nje elele pha ebhedini. {IsiXhosa} [Before she got the pills, she didn’t manage to do anything. She was always complaining about her throat. She couldn’t swallow food. She didn’t eat. She didn’t do anything. She just slept in bed.]
Noluntu: Mna ukugula kwam, ndagula nje ngento nje. Ndasuka ndenkxi into. Kwasuka kwarhaw’zelela nemiqala, yonke lonto. Kwabuhlungu, kwama. Ekubeni ke ngoku ndafumana lamayeza neepilisi, kwangathi kuba bhetele. Ezipilisi zithathe iintsuku eziyiyi-8, ndathanda nokutya, ndathanda nosebenza. Bendingathand’usebenza, soloko ndifun’ulala. Ewe ezipilisi zindincedile kwinto bendiyiyo kuqala. {IsiXhosa} [When I was sick, something was blocking my throat and smiling. My whole throat was itching. It was so painful. When I got the medicine, the pills; I got the pills, I got the medicine, I got better. These pills took only eight days to heal me. My appetite returned and I managed to eat. I wanted to work whereas before I didn’t feel like working. I always felt like sleeping. Yes, these pills have helped me a lot, because I was in a very bad state before.]
Support group
Busiswe Maqungo: After watching uNoluntu lo nosisi lo ebehambela izibhedlele, I think okok’qala it shows that abantu abaphila nengculaza nee-activists…for ubomi babo. Because usisi lona uhambile waqond’ba abantu bayagula and begula yinto eno-treateka, just that akukho treatment yalonto leyo. And ngenxa yakhe kubekhona i-difference kwi-area yakhe. {IsiXhosa} [After watching Noluntu and the activist, it shows that, firstly, people with HIV and HIV activists, it’s good that they have information, and what to do, I mean taking responsibility for their future. The lady in the insert saw that people are sick with something that can be treated, and she took the first step. Because of her, there was a difference in her area. This is something we can all do as HIV activists, positive and negative.]
Vuyani Jacobs: Treatment literacy, as was pointed out in Indwe, plays a very beautiful part of it, because there was no fluconazole there, but in the second hospital there was fluconazole. It depends on how healthcare workers understand and grasp the HIV education, and how we, as people living with HIV, can help each other in that regard, say to the healthcare worker that: “I think, this is my third time of coming with thrush, and I think I need fluconazole.”
Prudence Mabele: Uma uhamba uyobheka ama-opportunistic infections, uwa-treata… uyenza ukuthi kungabi neenkinga, uzogcina u-right ungaguli ngoba uzobheka wena kuphela. And iyeza ukuthi uhlale is’khath’esningi ungaguli and then angekhe unide uyothatha ama-ARVs sooner because u-busy utrithana nama-opportunistic infections. {IsiZulu} [When you have your OI treated you’ll make sure there will be no problems. You will stay healthy for longer and you won’t need to take ARVs so soon because you’re treating your OIs and that helps a lot.]
Lihle Dlamini: You should have ebactrim, some people call it Purbac, some call it Cotrimoxazole, you should have it when your CD4 count is going low, to a certain level, in order for you to avoid contracting so many OIs.
Narrator: What should we do if medication is not available at our clinics and hospitals?
John Vollenhoven: There was two weeks at our local hospital when there was no Bactrim. And people had to ask: “What is wrong here, what is going on here?” And they were saying: “No, but I hear the people that were supposed to supply the pills weren’t paid.” “By who? Why are the pills not there? What happened to the budget of the hospital because the suppliers come from your main district hospital to your local hospital.”
Lihle Dlamini: You should have access to Bactrim from your local clinic. It’s free of charge. No one has to charge you for Bactrim.
Narrator: What are our responsibilities when we get medication?
Bonile Peter: Anyone who has an infection, any kind of infection, it is important to finish your treatment. It’s also not correct to share treatment with other people. You actually don’t stop your treatment, not unless a doctor or a nurse tells you to.
Busisiwe Maqungo: Bonile reminds me of something that I had the other day. I had thrush, not the thrush in my mouth. I knew that my friend, Nomandla, also had thrush. There’s this cube that the doctors give you to put in your vagina when you have thrush. Then I went to her and said: “Do you still have the cream that Hermann gave you, because I think I also have thrush, now I don’t have time to go to the clinic?” Then she said: “No, you must make time. You must go to a clinic and get your own medic, because this is mine, and we’re not sure if we have the same thing that I have, so it’s important for you to go see the doctor.” I immediately went to see Francoise, then he gave me medication.
Lihle Dlamini: Enye i-opportunistic infection amaklinik ahluleka ukuyi-diagnosa yi-herpes. [Another OI that clinics fail to diagnose is herpes.] When you develop herpes, you have to get Acyclovir within 72 hours, but at the clinic they do give you calamine, and they said it will go away. And people just use that calamine and still the herpes doesn’t go away, they still continue using that calamine. [I think people should go back to the clinic and ask for Acyclovir, because Acyclovir izonceda ikline ngaphakathi. {IsiZulu} [from within, from inside you.]
Jason Wessenaar: Coming up after the break Dr Nombulelo Madala, our Siyayinqoba resident doctor, stay tuned.
Jason Wessenaar: Re a le amohela mona mo Siyayinqoba Support Group. {SeSotho} [You are back with the Siyayinqoba Support Group.] Dr Nombulelo, our Siyayinqoba resident doctor is in the house, welcome doctor.
Jason Wessenaar: Dr Nombulelo, I was diagnosed HIV positive five years ago, and I also know that there is different stages to HIV. I haven’t really had any OIs in the five years that I’ve been positive. My question to you is: at what stage should one expect which opportunistic infections?
Dr Nombulelo Madala: There are diseases that are possible to get in the environment, and there you have a person whose immune system has been weakened by HIV, and they are more likely to get those diseases in their lifetime than they would have been if they were HIV negative. And it’s possible to get them, right from stage 2 of having the HIV disease, up to stage 4, which we call AIDS.
Busisiwe Maqungo: How does treating the OIs early help you to not develop to the AIDS stage quickly?
Dr Nombulelo Madala: The reason why the topic of OIs is one of the most important ones is the fact that what makes people with HIV very sick, and what actually affects the quality of their lives, is being sick with these OIs. Most of the time that the person is living with the virus, they will be seeing the doctor and not going to work, and being disturbed in their lives because of being sick with OIs, and just few of the times will it be a direct effect of the virus. So that is why people should learn to take them serious, and go early to the doctor, because remember, the immune system is poor, and it’s not doing much to help itself to try and fight with the illness, so one needs treatment much more earlier than a healthy person would.
John Vollenhoven: People with HIV get the swelling here behind their neck, called the lymph glands or something. How is it treated, why is it coming here, because I had it twice in my time now? What do you treat it with?
Dr Nombulelo Madala: Most of the time, people think that that is OIs. But actually, that is a sign of the body’s immune response to the presence of HIV in the blood. So a person might have the swollen glands all over the body, and also they may have skin rashes. Those are not OIs, that is your body’s response to the presence of HIV in the blood, and that’s actually a good sign, that shows that your immune system is working.
Anthony Fernandes: Earlier on, doctor, we saw a woman taking a home remedy of lemon juice for her thrush, which I think it would be very painful, yet she didn’t know there were all these medicines out there to treat it immediately. Is it true that home remedies, this is a miss, that you must ignore it completely, or is there something that you can do yourself to boost your immune system at home, or should you just go out immediately and recognise that you should get professional opinion about it?
Dr Nombulelo Madala: Some home remedies are very good and very well-researched, and one should not just dispense them as being myths. But most of the time in HIV, even the good home remedies are things to use in the meantime, while somebody accesses proper healthcare, because most of these things need to be cured, and for a cure you need medication.
Bonile Peter: Some times a person may have an infection. Why does it become so severe when it comes for the second time?
Dr Nombulelo Madala: HIV is a steadily worsening disease, so it could be that when a person had the infection the first time, their immune system was at a certain level, and now when you’re having it a second time, the immune system had already gone lower, and then obviously the infection is more severe because there’s less of an immune system to try and fight with it.
Jason Wessenaar: Diteboho ho Dr Nombulelo le ho Siyayinqoba Support Group le lona mono mahaeng. {SeSotho} [Thanks to Dr Nombulelo and the Siyayinqoba Support Group and viewers at home.] Things you should remember are:
- Be treatment literate.
- Get early and effective treatment for any infection.
- Complete your course of medication and don’t share your pills.
Jason Wessenaar: We hope that you have enjoyed the show and are feeling the Siyayinqoba spirit. Together we can Beat It! If you have any questions for Dr Nombulelo or any member of the support group, contact us on the numbers on the screen now. Join us again next week in the Siyayinqoba Beat It! Support Group. Ho fihlela bekeng e tlang. {SeSotho} Until next week. Stay healthy, stay positive.
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