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Siyayinqoba Beat It! 2005 Episode 11 –
Multi-drug resistant TB
Many people living with HIV also get TB. Why is it so important to diagnose TB early and take TB medication properly? How can you get effective treatment for multi-drug resistant TB? Together with the Siyayinqoba support group, we learnt the answers to these questions from the experiences of studio guest, Shane King from Atlantis, and from the story of Nobuhle Nunwana from Beaufort West.
Jason Wessenaar: Hello and welcome to the Siyayinqoba Beat It! Support Group. My name is Jason. In the Siyayinqoba Support Group we are all living positively with HIV. Each week we get together to discuss issues that affect our lives living with HIV; from positive living to sex and sexuality. Siyayinqoba is your guide to better living with HIV. If you are living with HIV or you have a partner, a family member or a friend living with HIV, this programme is for you. Today we’re talking about multi-drug resistant TB. TB is a typical opportunistic infection and according to latest research, about two million South Africans living with HIV also have TB. Normally TB is treatable and curable but if you don’t finish your six months treatment or skip doses, TB can become resistant to the medication. Multi-drug resistant TB can be passed on to others. We are pleased to welcome Shane to Siyayinqoba. Shane is here to share his experiences of MDR TB with us. The Siyayinqoba team visited him at Brooklyn Chest Hospital where he was being treated for MDR TB.
Diagnosing multi-drug resistant (MDR) TB
Atlantis, Western Cape
Shane King: My name is Shane, I was diagnosed with HIV in 1998 at Tygerberg Hospital. In October 2003, I was diagnosed with TB, I did the six months short course and after about two or three months, my sputums were cleared, I completed the six months of treatment. But then just a month later I was diagnosed again with TB. At that stage, I still had a pain in my right hand chest but then when it persisted for about three weeks, she sent me for x-rays and that’s when we found that the TB has caused a cavity on the right lung. Final sputum’s that were taken at the clinic in January showed that the TB hasn’t cleared up.
Dr Sweetness Siwendu (Brooklyn Chest Hospital, Western Cape): What happens with MDR TB is that they take your sputum and they send it to the lab for testing and you find that you are resistant to two of the most important drugs, that are important for the treatment of the MDR TB. Xa sowusitya iipilisi ze-TB, ukuba uyabona ingathi zikhona izinto eziyenzayo apha emzimbheni, uyakhupha, uziva ngathi uzaw’khupha ngamanye amaxesha, kunyanzelekile uba uxelele u-nurse okanye ugqirha kwenzele sizobona uba masithini na. ungasuki uziyekele ngokwakho iipilisi. Into ebalulekileyo xa unale-TB ekuthiwa yi-MDR ukuba iipilisi zakho uzitya uzigqibe. Ukuba awuzigqibi ngaphandle kokuba usulele abanye abantu abasekhaya nabanye abantu ohlala nabo, nabantu osebenza nabo, ungafa. Iyabulala uba ayinyangekanga. {isiXhosa} [If you’re on TB medication and you notice something different with your body such as vomiting or nausea, it’s important that you tell your nurse or your doctor so that they can help you. Don’t stop the pills on your own. When you have MDR it’s important to take all your pills and finish them. If you don’t finish your pills, apart from giving other people TB at home and those you work with, you can also die. It kills if you don’t treat it.] I just want to show you your chest x-rays so that you see exactly what we are talking about, where your TB is and what you have got. The first x-ray here is from the 21st of January, we’ve got a second one now, ok. So a normal lung is supposed to be black like this, without all these white things that you see. So this x-ray shows that your TB is down there, in the right lower zone and also you’ll notice at the top, that’s where you have your apex. You look at that round thing there that is a cavity in the lung; it shows as a cavity there. This x-ray is more or less the same as this one, so as your TB improves, this cavity should close. It will get smaller and smaller until it closes and it will disappear and it should remain black like this.
Shane King: So tell me doctor, if after 18 months of treatment I do the whole thing without slipping or anything, will I be able to get MDR TB again?
Dr Sweetness Siwendu: Yes, it is possible to get MDR TB for the second time. It’s rare but you can get it, your chances aren’t higher because you’ve had MDR TB before.
Shane King: Do you think maybe my HIV status plays a role in my contracting MDR TB?
Dr Sweetness Siwendu: Some people who’ve never had TB before, just because they are HIV positive, they’ve got 10% chance of getting MDR TB per year just because they are HIV positive, even if they’ve never had TB before. So it does play a significant role in the development of MDR TB.
Shane King: For people that have normal TB, I would advise them to finish their treatment, they don’t want to get multi-drug resistant TB. Four tablets a day is much better than twelve tablets a day.
Support group
Jason Wessenaar: Shane did you have any signs that you might have MDR TB?
Shane King: Well, no because I had just finished eight months of treatment, I was feeling very well. When I was tested for MDR TB, I had been on ARVs for about a month and I was feeling good with no side effects from the ARVs. The only thing that was a problem was that I had a pain in my right chest and that was the only thing. I didn’t even think it would be TB or MDR TB as such. It was only when the pain persisted after a month, the doctor who treated me with my ARVs and stuff, recommended we have an x-ray done and that’s when we saw the cavity that was there.
Primrose Mathabatha: Can you kindly explain to me what is MDR TB so that I can understand it better?
Shane King: MDR basically means multi-drug resistant. My body is resistant to certain components of the TB drugs, two of the main ingredients, as you heard in the insert, I’m resistant to two of the main ingredients. While I was at Brooklyn Chest, after a week we found out that I was resistant to a third component as well. So what it means is that those things will not work in your system.
Jason Wessenaar: Were you resistant because you didn’t take your medication all the time, did you skip doses or did you overuse the tablets?
Shane King: I don’t think anybody wants to overuse TB drugs in the first place because of those big purple tablets. There is a possibility that I contracted MDR TB from the onset, it’s just the way the protocol is. You don’t get tested for MDR TB when you go for your first TB test. And then when they found out for the second time that I got TB, only then did I hear that I was supposed to be tested for MDR, when it happened the second time around, which never happened. That is supposedly the protocol. So you don’t normally know from the onset that you’ve got MDR TB, it’s only once you’ve gone for six months and then eight months of treatment and it still persists, then only they take a test.
Busisiwe Maqungo: Inayo indawo yokundoyikisa le-MDR uthetha ngayo ngoba bendingayazi into yoba abantu xa be-HIV positive, bayakwazi ukuyifumana i-MDR TB engakhange abenayo i-TB. ,bendisoloko ndicing’ba umntu ukuze abenayo i-MDR, funeka ibengumntu ongakhange ayithathe kakuhle i-treatment yakhe and then kengoku u-end up ene-MDR TB. Yilonto ibindibangela ke mna as an HIV positive person into yoba i-TB andiyazi uba ndiyiteste kangaphi kuba ndisoyika lonto leyo uba kufuneka itritwe kwa-early. Kengoku xa uphinde uthi kwawena bayakwazi ukuthi nje zisuka abene-MDR TB. {isiXhosa} [I’m very scared about this MDR because I didn’t know that especially when a person is HIV positive, that they can get MDR without having normal TB. I thought MDR TB occurs when a person defaults TB treatment. And that’s why they end up having MDR TB. That’s why as a HIV positive person I’ve tested many times for TB. Because I thought it must be detected early in order for it to be treated. Now that they can detect it immediately, I don’t know what to do.]
Lihle Dlamini: Indlela esetyenziswayo esbhedlele ukuthi they noprmally take i-sputum basise e-laboratory and then if i-sputum sakho sibuya si-negative, automatically they assume ukuthi you don’t have i-TB {isiZulu} [At the hospital they normal take the sputum and take it to the laboratory. If your sputum comes back negative, automatically they assume you don’t have TB.] And then for some lucky people, they do have an x-ray and that’s when they can detect that you have TB. The x-rays won’t show other types of TB. There’s pulmonary TB, TB of the lungs, there’s extra pulmonary TB which can be plural effusion, pericardial TB, this is the space around the heart and there’s also abdominal TB of the stomach. There’s also spinal TB in the spinal cord, there’s TB meningitis of the head; there’s all sorts of TB. So, it’s very hard to detect TB and it’s not only an x-ray that can detect TB.
Shane King: The only places that you do not get TB, are in your nails and in your hair otherwise every part of your body can be affected with TB.
Busisiwe Maqungo: Can you infect abanye abantu ohlala nabo apha endlini [other people at home] with MDR TB?
Shane King: Every month they take another sputum test, from there they can tell whether you are still infectious in the sense that they can still tell you that you can infect other people. So sometimes you can be infectious still after two months of treatment even if you’re taking your treatment correctly or even after three months.
Busisiwe Maqungo: How will they make sure that you’re no longer infectious to people?
Shane King: Well, the only thing that they can do is to treat you constantly and that is why they keep you in the hospital. That is why they don’t want you to go out there.
Vuyani Jacobs: When I was diagnosed with TB, I was referred to a support group, I was given clear counselling. I was very thin, I didn’t know how TB works; that’s the first thing. The second thing was that I thought I was just dying of AIDS but when I was counselled on what is TB and how you feel and what’s going to happen when you start taking your medication. I was given a green card and this card had Monday to Friday and every morning I go there, they give me my medication, they tick on the time I came there. It was like discipline, at the same time I was told that you can come here for a support group, people with HIV and so forth. The third thing that was beautiful that happened there was that they gave me a piece of bread because I was unemployed and I didn’t have money to eat everyday. So there used to be a piece of bread there and some soup, so I take one piece of bread and soup and I ate it, within a week or so, I felt good.
Lihle Dlamini: Vuyani, you are very lucky that in the Western Cape you are given a piece of bread and soup. For me in KZN I had to wake up and follow the queue at half past three in the morning and it was very cold because you have to be there before half past seven. After half past seven the gates are closed, there’s no-one that can come in. Imagine you get there at 3:30 in the morning and the gates only open at seven and after seven they are closed. And then you have to sit on benches the whole day, mind you, you are very weak, you’re thin like most of us lose weight, I was 43 kgs when I had TB. I was very tired of sitting on a bench. Firstly you take a sputum and then you wait for two hours, and then you get called in for an x-ray and then you wait for three hours and you take your x-ray results and then wait for four more hours and then you go and see a doctor that’s going to examine you. And then you have to wait for 30 to 45 minutes to go and fetch your medication and it’s very difficult. A person must be committed. And also after that I had to go home, I had a supporter but she was not supporting me. I had to take care of my own life. I had to tell myself I’m going to take this medication and finish it because I wanted to be cured of TB.
Jason Wessenaar: We talk more about MDR TB when we come back. Stay tuned.
Jason Wessenaar: We are talking about MDR TB which occurs when TB becomes resistant to the normal TB medication.
Adhere to your TB treatment
Khayelitsha, Western Cape
Nobuhle Nunwana: Ndiqale ugula ngo-February kulonyaka apho ndandilaliswe khona es’bhedlele eBhofolo ndingaphilanga, ndinezilonda apha emzimbheni, ndatsalwa igazi pha ndenziwa i-test. Ndi-HIV positive ne-TB. {isiXhosa} [I started getting sick in February this year when I was in Beaufort West. I had sores all over my body and it was decided that I do a blood test. I’m HIV positive and I had TB.]
Dr Natalie Malan (Tafelsig Clinic, Western Cape): You must definitely drink your tablets because the TB and the HIV work together, the TB makes the HIV stronger and the HIV makes the TB stronger, that’s why I’m going to see you every month.
Nobuhle Nunwana: Ziyabuya, ndiyavomitha elek’ba ndizisela, ndiyavomitha. Ides’ke ndiqonde uba yhu ha-ah, ndifuna ukuziyeka mna ngoku. {isiXhosa} [The treatment makes me nauseous and makes me vomit. And I was thinking of stopping the medication.]
Dr David Coetzee (Public Health Specialist): The possible reasons for the big difference or the fact that South Africa is low on the list, in terms of success with regard to the TB programme, is because patients with TB need support. Often they are the poorest patients, there are many reasons why patients don’t take their medication. The medication does cause nausea and tummy upset and so one needs to be able to understand and listen to patients when they have these problems and try to provide support for them in terms of the disability grant which patients for TB are eligible for and to understand why they might not be taking their therapy. Taking any medicine for a long period of time is difficult and if one understands why one needs to take it for six months and if more treatment literacy programmes around TB are provided by the services, more patients may be more adherent.
A few months later Nobuhle died of an AIDS related illness.
Support group
Jason Wessenaar: We are talking about MDR TB which occurs when TB becomes resistant to the normal TB medication. We also extend a very warm welcome to Dr Lindiwe Mvusi, the Director of TB in the Department of Health. Welcome doctor, what are the new developments or what has the government been doing to make sure that the tests are accurate, quicker and also that they include issues like MDR seeing that it’s a problem, it’s expensive to treat and it takes longer to treat and that a lot of people are coming up with MDR TB?
Dr Lindiwe Mvusi (Director: TB programme, Department of Health): When you look at the current methods that are there, we rely more on microscoping which is really an outdated and old method of diagnosis. And we also have culture which we do but again the problem with cultures as much as more specific and sensitive in terms of picking up TB, they tend to take a long time because they have to look at the specimen that is brought in try and grow this bacteria on a special medium in the laboratory. And that takes a long time because the micro bacterium that causes TB is a very slow growing bacteria hence you find that by the time you get the results, back to the clinic, it’s either you can’t find the person because that person has gone wherever and this causes problems for us. But then it is clear that we need to look at better methods of diagnosis.
Primrose Mathabatha: Can you explain for me what culture is so that when I go for a TB test I can know what culture is.
Dr Lindiwe Mvusi: Culture is a way of growing the TB virus and it’s done in the laboratory. They take your sputum; they keep it and grow it at the laboratory. After that they will be able to tell if the TB is present in your body.
Jason Wessenaar: What happens within the eight weeks of the culture test? What do you give to that person because the person might be infecting other people?
Dr Lindiwe Mvusi: We do not necessarily wait for the culture results. Based on the information you give us on your history of this illness as well as the clinical findings because we’re supposed to examine you. Then we can make the diagnosis to say the chances are high that you have TB but then we need to confirm the disease by doing a smear and your culture. So if the smear doesn’t tell us, it comes back smear positive and we know that chances are you have pulmonary TB, we start you on treatment whilst we’re waiting for the culture results, so that by the time they come and they are positive in any case, you’re already on treatment, not continuing to infect people out there.
Jason Wessenaar: How long does the smear take?
Dr Lindiwe Mvusi: In a hospital it can take a day, by the time you leave, you should have your results but obviously in clinics it’s supposed to take 48 hours depending on how close they are to a laboratory or it might take close to three or four days before the results are communicated.
Lihle Dlamini: Can you see if a person is going to be resistant to some of the TB treatment?
Dr Lindiwe Mvusi: Once the bacteria has grown we place it on a plate that has all these drugs, where the bacteria will be tested to see if it will continue to grow. If the bacteria continue to grow then we know that a person is resistant. If it doesn’t grow then it means the drugs are killing it, therefore it means that a person is sensitive to the treatment.
Jason Wessenaar: Is poor adherence the only reason for MDR TB? What is the cost of treating MDR TB?
Dr Lindiwe Mvusi: The most common reason is poor adherence to TB the first time around and hence the more we expose people to TB drug, the more we are putting them at risk of developing MDR TB. And in terms of costs, just on the treatment alone, it’s costing us about R22 000 for the 18 months period because they have to be on treatment for 18 months, to 24 months per person. And then we still have laboratory costs which also amount to about the same R20 000 or so. We still have hospitalisation costs which we haven’t factored in because they need to be hospitalised for four months, at least. So you can imagine the costs that are involved just by treating one person.
Jason Wessenaar: What can we do to prevent ourselves from getting TB and from getting MDR TB?
Dr Lindiwe Mvusi: What we can do to prevent TB is to be aware of the symptoms of TB. Go to the nearest clinic, get tested and if you are on treatment, finish it. If there is someone you know at home, work or a friend who has TB symptoms and tell them to go and test for TB so that they can get treatment. If you know someone who has started TB treatment, you must support them and make sure they finish their treatment.
Jason Wessenaar: You’ve been watching Siyayinqoba Beat It! Support Group, the programme for everyone infected and affected by HIV. I’d like to say thanks to Shane, Dr Lindiwe, the support group and the viewers at home. We hope that you enjoyed the show and have learnt something valuable. Join us again next week on Siyayinqoba Beat It! Support Group. Till then stay healthy and be blessed.
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