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Beat It! 2002 Episode 11

In this episode of Beat It! the Support Group members talked about what they are doing as individuals to turn the tide on HIV. Dr Nombulelo then went on to look at shingles and how they should be treated. In the Special Report we looked at the grants that are available and what the criteria are in order to get them.

Nombeko Mpongo: Namkelekile kuBeat It! – inqubo eniphilisa ngcono nentsholongane ka gawulayo. NdinguNombeko Mpongo. {IsiXhosa} [Welcome to Beat It – the show that makes it easy for you to live with HIV/AIDS. My name is Nombeko Mpongo.]

Vuyani Jacobs: I am Vuyani Jacobs. Beat It! – is for everyone who’s trying to beat HIV/AIDS and that’s five million people living with HIV and all our families and friends.

Nombeko Mpongo: Ooh, sounds like half of South Africa should be in this fight. Coming up in the programme this week is Dr Nombulelo is talking to us about shingles. Oh, I had them, zibuhlungu {IsXhosa} [they are painful].

Vuyani Jacobs: And we bring you a special report on accessing Foster Grants and Disability Grants for HIV positive people.

Nombeko Mpongo: But first, let’s join the Support Group where Mathew and others are talking about what they doing to help stop the epidemic.

HIV/AIDS Advocacy and community work

Busisiwe Maqungo: Ndandingazi into’ba kukho mhlawumbi, as a person now, ubomi bam butshintshile I just thought ubom’bam bufikelele es’phelweni. Ndiyahamba ndiyohlala ekhaya ndilinde until I die. Yazi yenye yezinto ezincedayo ukusebenzela i-community ungumntu o-HIV positive because ndabali-voluteer lika-TAC, I educated abantu. And ndas’ke ndabona ubom’bam buyinto nje elula ehambayo because ndandisazi ‘ba on the other hand I’m helping abanye abantu abanalentsholongwane naba bangeka phili nayo kuze babe bayakhuseleka. Until lona unyaka I got umsebenzi eUWC (University of the Western Cape), apho ndisebenza ne-students. E-UWC I’m like i-role model yabo on how to live positively with i-HIV. {IsiXhosa} [I didn’t know that my life had changed. I just thought my life had come to an end. I would just go home and wait until I die. Working for the community is one of the helpful ways when you are HIV positive because I volunteered for TAC and educated people. My life just got easier because I knew I was helping other people with the virus and those who don’t have it, so they can be protected, until this year when I got a job at UWC (University of the Western Cape), where I work with students. At UWC, I’m like their role model on how to live positively with HIV.]

Corné Fourie: We can all say that we all started working in the community when we found out that we were HIV positive. We all started in the community. And from there on it just developed. It developed ourselves as human beings to get some more dignity in life and it was through the community work that we do that. Some of us were fortunate to get jobs and it’s going better now.

Nomandla Yako: Bendine-support group ekuthiwa ngu-Wolanani, kulapho ke ndiye nda-employwa ngu-Wolanani ndaqala this year. [I had a support group called Wola Nani, where I was employed and started in February this year.] I find it difficult for me to work at children’s hospitals because you know ndonomntwana o-HIV positive and there I counsel oomama aba-HIV positive abanabantwana aba-HIV positive. So akululanga kum, abanye bayakhala umntu athi ndandivile nge-MTCT and azange ndivume utesta. So kengoku umntu uyazibleyma, nyani ke ufanele usibleyme xa wawuvile nge-MTCT, wangafuni ungenela i-MTCT. Abo banjalo bengayazi ndiye ndibaxelele ngam, umntu ave nook at least ithemba ubanalo xa evile uba kukhona nomnye umntu ofana naye, onengxaki efanayo naye, uyabo. {IsiXhosa} [I have an HIV positive child and there I counsel HIV positive mothers, who have HIV positive children. So it’s not easy for me. Others cry and say they had heard about MTCT but refused to go for tests. So people blame themselves, and they really must if they had heard of MTCT and refuse to be part of it. Those who had never heard of it, I tell them about myself, and at least they get hope to know there is someone with the same problem.

Sandra Merino: I’m a peer educator around HIV and AIDS. We have a centre in Tafelsig, where I live. Many people with HIV get sent to us from the clinic. Very often they have problems at home, then they get sent to us in Tafelsig. We then help with their problems. I don’t get paid for the work, I do it voluntarily. A couple of days back, I was on my way to my cousin in Bylands. I took the train and there this guy was sitting and he was asking me questions like what do I do for a living, am I married, stuff like that. And I said I give education around HIV. I talk about myself, what I do. I’m a single parent, I have a two year old son, my boyfriend left me when I was pregnant. And from there it took quite some time to get to where I am.

Busisiwe Maqungo: It’s helpful if we do something active on HIV; active like Nomandla and Bongi who went to Spain and Mathew who went to get medicines in Brazil. People are active and are working. It encourages others to see that someone is not just sitting: appears on TV, speaking, educating people in newspapers and on radio and in the community; you organise.

Nontsikelelo Zwedala: Ok siye eCofimvaba singabantu abayi-8 siyojonga into yoba iHIV/AIDS iqhuba njani that means i-awareness yakhona. Into esiyifumanisileyo yinto yoba abantu bakhona abazi nto kakhulu, oonurse oogqirha akhonto yaziwayo. Isibhedlele eso esineMOU but engenayo i-MTCT. So siye sathi sawufika ke sachaza ubu i-MTCT programme ihamba kanjani but ugqirha wakhona uye wathi akanaw’kwazi until izinto zibe ziza eBisho ukuze abe uya-accepta uba ingenziwa i-MTCT program phayana. Iright icondom qha ifuna ukufakwa ngexesha eli-right. Uba ungubhuti yifake ngexesha o-ready for ukwenza i-sex. {IsiXhosa} [Eight of us went to Cofimvaba to see how they handle HIV/AIDS awareness there. What we discovered there is that the people are not well informed, nurses and doctors. Very little is known and the hospital has MOU (Midwife Obstetric Unit) without MTCT. When we got there we explained how the MTCT programme works. The doctor told us he would have to wait for authority from Bisho before he could accept an MTCT program. A condom is okay. You just have to put it on the right time. If you’re a man you must put it on when you’re ready to have sex.] I was glad to go and do HIV awareness in Cofimvaba, because I knew that very little was known there. I was only diagnosed when I came to Cape Town while I’d been sick in Cofimvaba.

Vuyani Jacobs: When I started becoming open with HIV, I started getting the respect, the empowerment, the creativity. I mean most of us for instance we get Busi becoming a counsellor at UWC, you get Sandra as a peer educator. Things we sometimes don’t normally do if we couldn’t find out about our own HIV status.

Bongiwe Mkhutyukelwa: Like mna ndandingekaze ndicing’uba ndingazibona sendiyi-writer or whatever but now as i-writer yeTAC newsletter ekuthiwa yi-Equal Treatment. And ndiyayi-enjoya, kumnandi but andikaze ndizi-imagine ndiyi-writer now I’m writing the newsletter. Maybe ingandenza ndibe somewhere. {IsiXhosa} [I never thought I’d ever be a writer, but now I’m a writer for TAC’s newsletter, Equal Treatment. When did you first discover that you are HIV positive? I enjoy it. It’s nice, but I never imagined myself a writer but now I’m writing the newsletter. Maybe that can take me somewhere.]

Vuyani Jacobs: Some of us have never been made out to be role models but we ended up becoming, but because we don’t want to be victims of HIV. We say we’re not victims. We’re people living with HIV. Not dying out of it. So we’re taking advantage of a situation that’s supposed to be looking as a disadvantage but just taking advantage of it and make it a better and a lighting point, enlighting other people’s lives too.

Mathew Damane: I never thought that one day I will be a counsellor or whatever because I’ve come a long way with the HI Virus. I work very hard for the community, helping the people who are HIV positive. For those who are hopeless about their lives, I go and visit them and talk to them about HIV and how I cope with my HIV status. In the long run, I found I don’t have much skills to talk to these people. I decided to go to Lifeline, which is an NGO that trains counsellors to counsel. Our core function in Youth Centre is the FP, the Family Planning, STD and this VCT. Bendiyinkwenkwe kodwa ngoku andisiyo {IsiXhosa} [I was a boy but I’m no longer a boy] so I’ve really made a difference at the youth centre. You will find that many people say that you don’t have to admire yourself but I do admire myself for my work.

Sindiswa Godwana: It’s amazing because in clinics people just stand up and tell about their status and they need help, others need counselling. And when I’m educating on the STD side, it was amazing because two ladies said they want to test now and a rapid test. And this week in another clinic, and old lady asked the nurse the side she can go to test now. So I think we are really working, we mustn’t give up, we must continue. Three out of ten people, if they just listen I don’t care. It’s finished.

Nombeko Mpongo: People are infected everyday, they need all our help. And there are few people who are very dedicated to do this kind of job; so we as PWA’s need to think about it and look after ourselves. People out there will think that we are too proud of HIV, we’re not. They are confused, we’re only proud of ourselves. It is sad to be HIV positive, we don’t like it, we only love ourselves.

Nombeko Mpongo: You’re back with Beat It! Listening to Nomandla and the others, I can see there’s no shortage of people who can be trained to do counselling for HIV testing, PMTCT and even for ARVs.

Vuyani Jacobs: Absolutely. national government needs to commit to training and ongoing support for counsellors at all health facilities to assist with VCT and treatment.

Nombeko Mpongo: Coming up, Doctor Nombulelo speaks to us about using Acyclovir in the treatment of shingles, a common illness for people with HIV.

Dr Nombulelo Madala's consulting rooms

Dr Nombulelo Madala (HIV/AIDS community doctor): Sanibonani kwakhona ekhaya. UDoctor Nombulelo, iHIV doctor yenu seyifikile. Siyanamkela kwakhona. ULinda yi-patient yam e-HIV positive. I-problem emkhathazayo is that une-chronic {IsiXhosa} [Hello again at home, I’m Doctor Nombulelo, your HIV/AIDS community doctor. We welcome you again. Linda is my HIV positive patient. She’s relatively healthy, she’s in stage two and she’s a domestic worker. The problem that worries her is that she has a chronic] pain in the right arm which has been going on for the past two years. And this is troubling her because it affects her job. Linda had shingles about two years ago and the shingles were not treated correctly and now the pain remains with her. Shingles is a viral skin infection common among HIV positive people. It’s caused by a virus called herpes zoster which is a sister virus to the one that causes herpes ulcers. This virus attacks nerves and then on the skin above the nerve, that’s where you get the shingles rash. The rash starts off with a tingling sensation first before you see the blisters. And they are painful blisters. It can be anywhere in the body, on the arms, on the chest, on the abdomen and sometimes even on the legs. It’s very dangerous to have shingles around the eyes on the face because then it can attack the nerves that help you to see. Then you can become blind. The reason has got this pain for such a long time even after the rash has disappeared, is because as I mentioned the infection attacks nerves and that’s why the pain goes on even after the rash has disappeared. And secondly, Linda was not treated properly. By treated properly I mean she should have received Acyclovir tablets the very first time she had the rash and earlier on, just during the tingling sensation even before you get the blisters. Use the Acyclovir tablets, it hits the virus immediately and then you cure your rash immediately and then you are not left with pain at all. This is a picture of the shingles rash on a HIV positive lady. On the left side, it’s the blisters but they’ve become ulcers already on the right side. This lady should have received Acyclovir long before this developed to this stage. It’s one of the very important drugs in the fight against HIV. Thank you very much for listening to me. Goodbye until next time.

Nombeko Mpongo: In this week’s Special Report we look at the issue of Social Grants. Every person who adopts an AIDS orphan is entitled to a Foster Grant. Government is also committed to providing Disability Grants to people on the recommendation of their doctor.

Vuyani Jacobs: Absolutely. Many people find it difficult to apply for the grant. Today, we show you what you have to do to get a grant.

Special Report - Social Grants

Karen Kallmann (Black Sash Advocacy Worker): The grants that can be accessed specifically related to HIV is the Disability Grant which people can get in stage four. Now, there’s a lot of controversy around what stage four is and there’s really unequal practice throughout the country.

Olga Mabena (HIV Positive): I was having a chronic ear infection. I was badly ill because I couldn’t walk properly then I went to the clinic for advice and for help. Then they advised me to go to the Human Welfare Population. It was very difficult to apply for a grant because first of all, you need an ID. I didn’t have an ID, so I was supposed to make an ID. I went to Home Affairs for an ID. I waited for four months for my ID to come back and after that I came here then they gave me a form. After that form they took my number. After I went to the clinic to fill my forms I came back here. They gave me paper for fingerprints to take to the police station.

Sister Vivian Makgano Modiba (Stanza Bopape Clinic): The patient before she can apply for Social Grant must be assessed by the doctor. He must be physically or mentally disabled. Mentally disabled in a way that he cannot go and do some work. Like let’s say physically disabled, if the patient cannot do anything, he’s a bed ridden, he’s physically disabled so he can apply for Disability Grant. He or she comes to the clinic then the doctor will write a letter saying that this patient is physically disabled, suffering from this and this, will you please give a disability form. Then the patient comes with the disability form to the clinic and then take the files and then go to the observation room where he or she is going to be weighed and then we take the blood pressure, we take the blood glucose. Then he goes to the Sister and the Sister will have to fill the first part, meaning from this part; the medical history.

Olga Mabena: I waited for a Social Grant, I waited for three months and I was very anxious to get it. So I was in a hurry for it because it could do something for me, it could help me. It can give me life.

Karen Kallmann (Black Sash Advocacy Worker): The real problem with the Disability Grant is that it isn’t meant for HIV/AIDS, you know. They are just using it as a piece meal thing. There is no response on a grant level for people with HIV/AIDS. And by the time you’re in stage four, it’s almost too late because you need to start taking medication earlier, you need to start eating properly, you need to boost your immune system. And if you’re poor, you can’t do that.

Olga Mabena: I’m with my gran, so that’s what I use it for: paying the rent. Also buy myself food and vegetables. I feel much happier because I can do whatever I want and I care for my life and also this grant thing helped me so much because I can make myself live happy without anger because nobody makes me angry.

Karen Kallmann (Black Sash Advocacy Worker): There’s also Foster Care Grants for children whose parents have died as a result of AIDS or they’ve been abandoned or whatever but I’ve been trying to do research into child-headed households and the only government response seems to be the Foster Care Grant. And families can access it although it’s also quite complicated because you have to go to court. It’s a court order so the Ministry of Justice is involved in that application.

Lungisile Agness Zuma: Kwakunzima, ngiphuma ngiye la emasimini amakhosikazi, ngiwahlakuleze anginik’imifino, anginike noba ngu-R5. bengiphile leyo mpilo ebuhlungu ngoba ngunina kalo olokho engilethela imadlana ngikwazi ukuthenga ukudla. Kwathi ubangconwana ngakwazi ke sengingene kulaba ke, waze lomntwana weza la ekhaya uba ezobona uba kukanjani, ukuthi usizi lukangakani. Waze ke was’thatha wasisa emantshini nazo iingane lezi. Kwathi ke sengiya koomabhalane, segiphethe ke i-death certificate sikayise ne-death certificate sika mha wabo. {IsiZulu} [It was difficult for me. I used to go to other women’s fields to weed and they would give me vegetables and R5. I lived that kind of sad life, because his mother used to give me some money to buy food. It got better when I went to the authorities to talk to them and someone came here to see what the situation was. How extensive the sorrow was. He then took us to the magistrate, together with the children. We then went to the clerks with death certificates of the father and the mother.]

Karen Kallmann (Black Sash Advocacy Worker): The major problems we’ve been finding with applications is with Home Affairs and that people don’t have access to ID books, children don’t have access to birth certificates and those are essential if you want to access a grant. And the costs of getting those documents are so high for the poor that 70% of children who are entitled to the Support Grant are not getting them.

Lungisile Agness Zuma: Sengiphila kahle kakhulu, nalomntwana anganitshela le-social worker lo. Bengingumfazana osindwa ngamaphinifa ngokuba kungekho nakudla angazi ngiyokhonfoza laph’emasimini wamakhosikazi ngiyohlakula ngenzdel’ukuthi ngithole lomadlana encane nghiyoland’iskhucwana esingaka, hayi no ten kg. {IsiZulu} [I’m living better now. The social worker can tell you. I used to be a suffering woman, going around working in other women’s fields in order to get some money or food, not even ten kg. All the people in this household depend on me alone.]

Karen Kallmann (Black Sash Advocacy Worker): And it means tested which means they need to show how much they earn, how much money is being earned on that family. Now that’s extremely difficult, I mean if you think about someone who’s unemployed or is doing part time work or whatever, to get a pay slip or to get some kind of proof of how much you earn is extremely difficult. And that’s why we are saying for the new grant system, for the Child Support Grant as it is now we want to abolish the means test because it’s a barrier to accessing the poorest people.

Busaphi Dumakude: Kwathi ngales’khathi umha egula engekasishiyi, esagula nje impela, esebona njengomnt’omdala ukuthi kungenzeka angasindi. Nguyena okwazi ukuthi asilayele ukuthi mangabe kwenzeka ayishiye emhlabeni kuba asinamuntu, asisenababa akho nazihlobo esinazo. Asokwazi sihambe siye kuTugela amasocial worker. Sifa nje yindlala, singasadli nje lutho. Mawufuna ushukela sihambe sicela komakhelwane, sicela sicela. Ngaze ngahamba ngaya koTugela, ngafike ngafuna usisi Nonhlanhla. Yebo sahamba naye. Wanginakekela kakhulu. Sahlala is’khathi esincane ingekaphumi imali kodwa ngathi ngibona yabeseyi phuma ke. Manje sengibona sekungcono impela kakhulu. {IsiZulu} [When my mother was very sick, before she died, when it was clear she wouldn’t make it, she told us that if she dies, as we have no father or relatives, we should go to Tugela to the social workers. We were starving and had nothing to eat. If we wanted sugar, we had to go begging from neighbours. I then went to Tugela and asked to see Nonhlanhla. She attended to me and we waited a while before the money was available. Things are a lot better now.]

Nonhlanhla Grace Magubane (Social Worker): I-social grant yimpesheni etholwa ngumntwana usuke eshiywe ngabazali. Noba ngaba ngoluphi uhlobo abazali bahambiswe yilona, ngangabe yingculaza noma ngabazali nje bashonile ngaphandle kwengculaza. Kuba yimpesheni nje abayitholayo ephuma njalo ngenyanga kuze bakwazi ukusizakala bathole izidingo zaseskolweni, bathole ekhaya bayadla, bacinge nezinye izidingo zasekhaya. Kuba yimpesheni nje etholwa zingane, umntwana uyithola as from birth until 18 years. Mase kufika is’khathi ukuthi ufica ku-18 years usafunda, siyayi-extenda leyo grant leyo until 21 years {IsiZulu}. [The Social Grant is money given to children who’ve lost their parents in whatever way: be it AIDS or something else. It’s money they get monthly to help with their school needs, food and other things. It is given to a child from birth until the age of 18. After 18, if the child is still at school, the grant is extended until the age of 21 years].

Busaphi Dumakude: Sengumehluko omkhulu kabi ngoba ngitsho ngivuka ekuseni sengiyazi ukuthi ngizovuka ngipheke ni ngoba ukudla nginako. Mangithand’isinkwa, ngizokhipa imali ngiyothenga isinkwa. Ngase ngomso ekuseni ufuna ukudla ungazi uzopheka kudla kuni. {IsiZulu} [Things are quite different because when I wake up in the morning I know what I’m going to cook. If I want to buy bread, I just take the money and go and buy. It’s unlike waking up not knowing what to eat.]

Karen Kallmann (Black Sash Advocacy Worker): I think the Basic Income Grant is essential, I think free treatment is essential. The Basic Income Grant is a proposal for the universal grant of a hundred rand a month for everybody, from the cradle to the grave. It’s not means tested which means you don’t need to show how much you earn. It’s a right of living in this country, it’s a constitutional right. This grant really has the potential to have a huge impact. A hundred rand a month doesn’t sound a lot but households will pool their income. So poor households are usually larger; there are six people in the household which means it’s six hundred rands extra. South Africa is really in a unique position. We both have the money to be able to do an intervention like this and we desperately need it.

Vuyani Jacobs: By 2010, which is only seven years away now, there’ll be two million AIDS orphans in South Africa. If all these orphans qualify for a grant, the cost of the grant will be more than the cost of the ARVs.

Nombeko Mpongo: So even from a financial point of view, not even talking about the cost in human suffering, it makes sense to go for the ARVs.

Vuyani Jacobs: Absolutely Nombeko. ARVs allow kids to grow up with their parents and that’s our show for this week. Remember together we can Beat It!

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