Home / Episode 3

Siyayinqoba Beat It! 2004 Episode 3 –

Beating HIV at work

The Siyayinqoba Beat It! Support Group talked about the rights of HIV positive people at work in this episode. As an example the team used workers at a mine of Anglo Gold Ashanti. With the help of legal practitioners, we learnt the importance of understanding our rights and how they can help us in the workplace. Fatima Hassan, from the AIDS Law Project, joined the group and helped to shed a bit of light on how the rights of people living with HIV can be defended. Later Jason summarised the episode with the week’s ‘Things we should remember’.

Jason Wessenaar: Sanibonani siyani amukela kuhlelo lwe Siyayinqoba Beat It! support Group [Hello. Welcome to Siyayinqoba Beat It! 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 t’, every week we get together to talk about issues that affect our lives with HIV. Uma uphila negciwane le-HIV {IsiZulu} [If you are living with HIV] or have a partner, family member or friend who is HIV positive, Siyayinqoba is for you. Does having AIDS mean that you will lose your job? The Siyayinqoba Team went to Tau Tona Mine in Carletonville to meet Wiseman Gadu who is showing that employers and employees can work together to beat HIV. Let’s check it out.

Tau Tona Mine, Carletonville

Archie Pilane (National Union of Mine Workers): Five, six years ago within our membership it was seen as taboo to talk about HIV/AIDS. We addressed mass meetings, we made sure that workers accept that HIV and AIDS it’s just part and parcel of other diseases and other illnesses.

Dr Petra Kruger (ARV Manager, AngloGold Ashanti): By the end of 2002 we had well over 2000 people that had enrolled in the clinics, HIV positive patients, that were on regular check-ups, so it was very easy for us at that point then to add antiretrovirals, as an additional component to this wellness programme, and that is the point where we’re at now.

Wiseman Gadu: Apha e-Wellness clinic ndiza after two months, ndizobona ugqirha atsho ajonge uba impilo yam injani. {IsiXhosa} [I come to the Wellness Clinic every two months to see the doctor and to find out what is going on with my health.]

Dr Marius Keyser (Western Deep Levels Hospital): How’s it going at work, all right? No problem with your job?

Wiseman Gadu: Yes

Dr Marius Keyser: Ja, dis alright, daar sy. {Afrikaans} [Yes, it’s all good, there we go]. Your viral load was, in the beginning it was in January, when you started with treatment when you started with Combovir and Retrovir, it was 46 000, okay. Then you started on treatment, Combovir and Stockrin and the viral load, up to now, currently, is less than fifty copies in that drop of blood. Okay the CD4 count, your soldier cells okay, it went from 22 in December last year, to 176 so that’s a very good response against the virus, okay. That means the tablets is working, the virus is going down, and the white cells are going up.

Wiseman Gadu: Ndiyazikhumbhuza, zisoloko zihleli. Njeng’ba ndizitya nje ezipilisi, xa ndingena kuzikhathalela ukuphila kwam, akhomntu onondikhathalela. Kufuneka ndizikhuthaze mna. {IsiXhosa} [I remind myself, I am always aware when I’m taking these pills: if I don’t take care of my health no-one else will do it for me. I must motivate myself.]

Dr Petra Kruger: About three years ago we realised that we needed to pull together this whole programme, and just put it into a comprehensive package, monitor exactly what we’re doing and make sure that what we’re doing is effective and is best practice. And we estimated at that stage, with our current 40 000 employees, that about 30 % of them were HIV infected. We could estimate that a further 25 to 30 % of them were now at a clinical stage where they would require antiretroviral therapy. So you’re looking at probably around 3 to 4 000 people at this point in time that require antiretrovirals within our organisation.

Wiseman Gadu: Into eyabangela ukuthi ndizithathe mna yilent’ba ndandithand’ba mandiphile ngoba ndisiva. Ndibona ukuthi abantu bayabhubha sisifo sikagawulayo. {IsiXhosa} [What motivated me to take the pills is; I want to be healthy because I saw a lot of people die in front of me in this epidemic of HIV and AIDS.]

Support Group

Jason Wessenaar: What I need to know is that when I need ARVs that they will be there for me and that my employers are creating an environment that allows other workers to take their medication and to be open about their HIV-status. How important is an open environment at work for employees with HIV?

Anthony Fernandes: When I first came out, it was happening so fast, being in a relationship, being in a very busy job, it was very stressful, I was cooking, I was managing, I was running around, I had fourteen hour days quite easily seven days in a row, holidays were something that hardly ever came into my diary. My biggest worry at the time was, how am I gonna cope? How am I gonna keep this income? How am I gonna really be able to do what I do, ’cause I didn’t know what the change was gonna be like. Then once I started telling the staff I was working with as well, it was incredible, people just all of a sudden just changed their whole attitude and the whole environment became far easier, happier, friendlier, and it just happens to be that two other people I was working with also tested HIV positive shortly thereafter.

John Vollenhoven: Was there any discrimination against to make you feel uncomfortable when you came out and say to your co-workers that you’re HIV.

Anthony Fernandes: I think everybody thinks a lot of people act funny and differently. It was really not the people around me, it was more me. I was so busy trying to figure out what to do that I pushed people a little bit away and eventually someone said to me one day: “What is going on with you, can’t you just tell me?” and I thought, that’s it, I just have to tell people, then they know and they’ll stop asking.

Prudence Mabele: Is it true that positive people should just also feel like, okay, now I’m sick, and everyone else must just understand that now I’m gonna stay home for a week’? Is it one of the things that we should be doing?

John Vollenhoven: I had a family to support, and I was so fed-up also of them saying that they couldn’t pay me, it’s no use going to a doctor and bring your certificate, because there is no sick bay for you anymore. And it was very hard for me, but now it’s very different. And what has come out is that all factories, or maybe some factories have AIDS policies in their workshops. In some factories in Atlantis, I did some AIDS policies with them and what advice I have given them is; keep your worker in his work as long as possible, even if that person has to do some other light work. Because what has come out in my talk with the workers there is why, if for instance, Busi there is HIV, now when she works night shift that there has to be a heater by her? And the other workers were complaining, why should she be special?

Busisiwe Maqungo: It’s not only HIV people who need special favours. …kwenye ye endawo zisebenza where lendoda yayiswelekelwe ngumfazi yashiyeka nabantwana. Now emsebenzini … usebenzi ozamenza akwazi ukuba ngoku seyinguye umzali wabantwana. Now they had to find him umsebenzi ozoba-suitable for yena like ahlale egatini ajonge iimoto then ngo-5 uyatshayisa. Angabi ngulamzali ozatshintsha tshintsha ii-shifts. I mean balungiselela imeko yakhe. {IsiXhosa} [For instance, there is a case in a work situation where a man lost his wife. At work they had to give him shifts that are suitable for single parenting. So they had to find suitable work for him like working at the gate and coming out at five pm so that he doesn’t become a parent that changes shifts often to accommodate his situation.]

Vuyani Jacobs: There’s been two aspects of situations, especially in a restaurant, where you find someone is having skin rashes and so forth. And people are saying: “What is wrong with this person?” And they take the person to the doctor who is the friend of the owner of the restaurant and the owner has been told that, no, your staff member is having HIV and I think he’s in about fourth stage or so, and they try to make it as if she needs to leave the job, and so forth.

Busisiwe Maqungo: Vuyani said in places like restaurants, you cannot work because you develop rashes and maybe sores, so you cannot work with food. But you can still arrange that with the employers and…

Vuyani Jacobs: No. I did not say you cannot work in restaurants because you have rashes. You see restaurants are another type of thing where you don’t control your customers, you don’t control their feelings, their beliefs and so forth, so you do customer service. Which means, for instance that if you have too much rashes, the employer or the customer might not like it that you will be taking around the food around where they are.

Busisiwe Maqungo: I understood that very well, but they can arrange… they can take you away from food and from the kitchen and put you at the back, where you will be packing things.

Anthony Fernandes: I worked in a restaurant, there I was, I didn’t want to be in the pantry, I wanted to do exactly what I was doing before, with my rashes. I think that was my biggest fear after I left this job, how do I go find a new job? I want an employer who is educated who knows HIV, who knows the symptoms, who knows how it works, who knows about taking ARVs, he knows how long it takes to adjust, and make room for it.

Prudence Mabele: Being a boss of HIV positive people also, I feel abused, because people would not work hard to prove they can do the work. They know that we are so understanding, every time they show up with a sick note, or they just phone you: “Aah, today, I just can’t wake up”. No. Yet, when I worked for another company, I had to prove myself. I had a year contract. Every single day I was there, except when I’m really, really ill and I have to prove myself that I’m so ill: “Look I’m so ill.” So, I want us, when we talk about these things, and I’m not saying we’re undermining the policies… but we must keep that it mind, because so many people are also taking those days, and they’re also doing that and that, and they are just abusing the system in the process.

Jason Wessenaar: Siyanamukela ku-Siyayinqoba Support Group {IsiXhosa} [Welcome to Siyayinqoba Support Group], the programme for everyone infected and affected by HIV. We’re talking about employers making ARVs available to employees, but what about the employee’s family? Let’s join Wiseman at home.

Beating HIV after work

Wiseman Gadu: Ndathi ndawufika ekhaya, sendinolwazi kengoku loba ndi-HIV positive. Ndamxelela unkosikazi, ndamxelela udade wethu, ndamxelela nomninanwa wam. So ke nabo shame bayamkela. Batsho bendikhuthaza ke ba hayi xa ngaba lenkampani ndiyisebenzelayo ine-treatment eyikhuphayo. {IsiXhosa} [When I went home, I know I was HIV positive. I disclosed to my wife, my sister and my brother. Even them, they accepted me. They motivated me and said if the company I work for gives treatment I should make sure that I’m using the treatment.]

Theo Steele (Campaigns Officer, COSATU): As the trade unions we’ve still got a battle that we are facing, is where they’ve agreed to provide treatment and antiretrovirals. But the issue at debate presently is; what happens when the worker loses their job?

Nosakhele Gabu (Wiseman’s wife): Ndithe ndawudibana naye wandixelela uba u-HIV positive. Uthe wondixelela uba u-positive, ndiye ndanokwethuka ndaphinda ndaba ngabheka akukho kuthini ngoba ngumyeni wam, ayingomntu ndithandana naye. Ndaqond’ba andinomkhaba ngoba ngumyeni wam, ndofa apho afa khona. Xa ethetha ngoluhlobo, hayi ndiyamamkela noba unantoni. Ke nam ndiye ndaya ekliniki, akudalanga ndiyile. Ndiye phezolo, bekudala ke endiqhuba uba mandiye. Ndiyile ndayotshekha nam ndafumanisa uba nam ndi-positive. Mna ndifike seyestiya i-treatment kakade, nam ebeye andiphe ke, andinike ndisele. Uthi xa eselivini, sizitha sobabini ezipilisi, uye wanengxaki emsebenzini. Caba baye baziphawula uba ebengazisebenzisi yedwa, ngoba zikhawuleze zaphela. Utsho ukuthi bebezibalile ezi anazo. Besizitya sobabini, sizisebenzisa sobabini. {IsiXhosa} [When I met him, he told me he’s HIV positive. When he told me, I was shocked. I tried to look around for help because he is my husband, not just anybody. I told myself that I can’t throw him away. I will die where he dies. If he’s talking like this, I accept him, no matter what he has. Even I went to the clinic. It wasn’t long ago that I went there. I went yesterday. He is always advising me to go to the clinic to check. I went to check and found that I’m also HIV positive. When I came back, I found that he’s already taking the treatment. He always shared his pills with me. He stopped doing it now because when he was on leave we shared his pills so he had some trouble at work when he wanted more. They noticed he didn’t use the pills alone. They were finished quickly. They counted the pills he had received. We had taken the pills together.]

Theo Steele: We are looking at employers to provide treatment for the families as well, the dependents. And that’s a major battle we have not won as yet. Employers do provide medical aids for their members, and those medical aids don’t exclude the dependents, so what is wrong in providing treatment for the worker and for his dependents as well?

Support Group

Vuyani Jacobs: I do believe ARVs should be given, but workplace policy and workplace programmes must start with education. Education, education, education. Like, for instance, we see with the miner there, and you will see the union working around those issues. There must be a clear policy. Education must be the first programme, education. I said to a company one day who actually asked me to come and talk about my HIV status, and they wanted to test their employees. I said: “What is there? Why are you testing them? What is going to happen after testing? What is the issue?” Because you need to educate and give people a clear direction, and let them test out of that thinking and understanding. And let them, out of having that test thing, there must be wellness programmes. Wellness programmes is not just ARVs. Wellness programmes is that two days, five days, stress level programmes that we’re talking about, nutritional issues of eating well, talking well, having emotional issues to be looked into, that is part of the overall workplace policy that we all need in every workplace.

Jason Wessenaar: I think with Wiseman…In the workplace when it comes to the issue of abuse, Wiseman gave his wife his ARVs; would you consider that abuse of his benefits? Should companies with ART programmes take responsibility for their employees’ families too?

Prudence Mabele: In Wiseman’s situation again I challenge the policy. This is the education you’re talking about. How come Wiseman doesn’t know that you cannot share ARVs? It means that education is done quarter…so this is what I am talking about. People should be so informed that when they get into a situation they know.

Vuyani Jacobs: That whole programme should start from the workplace. But now you see that wife cannot get the ARVs unless she take it from Wiseman because the rollout have not even begin, it’s still in the drawing room.

Prudence Mabele: Can the companies afford it to take our spouses and our children?

Lihle Dlamini: But then if they are prepared to give the antiretrovirals to their employees, they should be prepared that they will be having enough money to provide for their spouses and their children also. You know, they shouldn’t engage into something that would discriminate on other people, and give some you know. Fanele bakwazi ukuthi ukunikeza abantu abangu-hundred nabantu abangu-hundred banama-families. {IsiZulu} [They know how to scale it: if we give to a hundred people, those hundred have families.] So we can even give to their wives, their husbands and their children also.

Prudence Mabele: A worker may also misbehave, and they give a first warning, a second and a third, and what do you do in that condition? You have to go, and then what happened, because you were paying for their ARVs and for their families’ maybe? So it is a very tricky one, but we’re going to have to all come up with answers, and one of the answers being the government must give and provide.

Vuyani Jacobs: The programme that Wiseman is part of is a very good programme. And we must not run away and say that it was right for mining programmes to be started like that because migrant labour system have created that people will get HIV in a higher level than any other way so there is a social responsibility there. And mining companies can afford it, and there’s many other companies out there that can be able to do it, like in clothing industries that’s supposed to go on this programme without any hitches. Then you find the workers sometimes being retrenched and is in Lusikisiki. Because of that programme that there’s working on the mine have the accessibility to be given ARVs, have the accessibility to multi-drug resistant TB medication, but when he is retrenched he cannot afford that, and he’s being taken back to the public health system, and the public health system does not provide all that kind of services. How do we work on that?

Jason Wessenaar: Fatima Hassan of the AIDS Law project joins us after the break, stay tuned

Jason Wessenaar: Re boetse reya le amohela hape mona ho Siyayinqoba Support Group.Re amohela le comrade {Sesotho} [Welcome back to the Siyayinqoba Support Group.We also welcome comrade] Fatima, an activist and a lawyer from the ALP, she’s here to answer some of our questions on workplace HIV/AIDS programmes.

Fatima Hassan (AIDS Law Project): I think that before we talk about whether workplace programmes are effective, you have to look at how did they come about? And there’s been a history in the last ten years of activism, where we forced big companies to take that social responsibility, to take that step, to firstly just stop conducting pre-employment HIV testing; secondly, to introduce workplace policies in the workplace so that workers would feel confident enough to disclose their HIV status, they wouldn’t feel unfairly discriminated, and the last step in that process was to introduce an ARV treatment programme. Now that introduction didn’t happen in a vacuum. There’s a political and a historical reason for that, and that’s because our government failed in it’s obligation to provide everyone in this country in the public sector with ARV treatment, and that is why there was a lobby and a concerted effort to make big businesses like Anglo-Gold, BP, Daimler-Chrysler, Sasol, Eskom, and some other companies. M-tel was one of the first companies to introduce a workplace treatment programme.

Vuyani Jacobs: But taking care of that is a process. For instance, I want to be honest, with this whole situation of medical aid, you will find that with some companies, I just don’t want to mention the company’s name, but the employer who’s working in the clothing industry is a woman, and this woman is paying some part of her money into the fund, into the medical fund, and she is getting the ARVs through a programme. And the other money that she pays into the medical aid is giving money to the husband. You see what I mean? We need to find a solution.

Jason Wessenaar: Coming back to the issue with Prudence. It is beneficial for the company to do that, to extend that programme to families, because if you take care of Wiseman, he is well, his wife is not well, he’s going to take days off work to take care of his wife, he’s gonna wanna do that, and I’m sure that’s not what they want.

Fatima Hassan: So the bottom line is money. It makes more economic sense tokeep your workers alive than to actually let them die, because then you have to retrain somebody, you’d have to multi-skill, etc. What about the partner? What about the wife? What about the children? And why are they sharing their tablets? And it’s not because they don’t know that they mustn’t share the tablets because they’re given proper counselling, they’re given proper education. But people in our country are so desperate. There’s a 40% unemployment rate in our country. South Africa is one of the most unequal societies in the world, so of course, when somebody is being given ARVs and their partner is also HIV positive, or their children, they think that by sharing their pills, maybe they can keep their wife or their children alive just for a few more years.

Anthony Fernandes: Would you advise people to disclose their status when they go looking for a job? For example, I’m open about my status but yet I feel it might jeopardise the fact that I might get this position. Do I disclose, or do I disclose later?

Fatima Hassan: The law is very clear. It says that in an employment setting there is no obligation on you to disclose your HIV status to your employer. Of course, we would encourage voluntary disclosure and openness in the workplace because it means you can have a better relationship with your employer. But where people feel unsafe, where they feel threatened, where they feel that they could possibly not be selected for the job, or unfairly discriminated against, there is nothing in our law that says you have to tell a person, you have to tell the human resources manager that you’re HIV positive.

Busisiwe Maqungo: And with the availability of ARVs in the workplaces, it means that there will be less incapacity.

Fatima Hassan: There’ll be fewer people who could then be dismissed on the grounds of incapacity because they’ll be better, they’ll be healthy and they’ll be working, so ARVs are an important component of trying to make sure that people are not dismissed unfairly, that’s an important point.

Jason Wessenaar: Thank you Fatima, the support group and you at home. Things we should remember are:

1. No employer may demand to know your HIV status.
2. Workplace ART programmess should be accompanied by wellness programmes too.
3. Companies and employees both benefit by keeping people with HIV and AIDS at work.

We hope that you have enjoyed the show and that you are feeling the Siyayinqoba Spirit, that, together we can Beat It! Please send us your comments and suggestions for our support group or for Dr Nombulelo, our resident doctor, on the numbers on your screen now. Join us again next week in the Siyayinqoba Beat It! Support Group. Goodbye. Remember, stay healthy, stay positive.

< previous episode | next episode >