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Beat It! 1999 Episode 2

In this episode the Beat It! team investigated what the implications would have been if AIDS where to be made a notifiable disease in South Africa. Dr Andrews and Faghmeda Miller discussed some rules for better living with HIV/AIDS. Some of these rules are repeated in the episode’s Food for Life section. Marc Lottering ended the show with the awarding of the Red Noose and Positive Person’s Awards.

Sipho Nhlapo: Hello, welcome back to Beat It! – the programme for people living with and affected by the HIV virus; as we all are. My name is Sipho Nhlapo.

Mercy Makhalemele: Hello, I’m Mercy Makhalemele, in case you are wondering what are we doing here, this week we are focusing on the government plan to make AIDS a notifiable disease. Not everybody knows what the consequences of this decision will be. The Beat It! team spoke to doctors, nurses, epidemiologists and people living with HIV and AIDS to hear what their views are on making AIDS a notifiable disease.

Sipho Nhlapo: While they are still doing that, I think kufuze sihambe siyobona uBra Thabo siyoxoxisana naye. {isiZulu} [we should go and see Bra Thabo and chat with him.]

Mercy Makhalemele: Good idea.

Special Report - HIV/AIDS Notification

Adeline Mangcu: Where in the world is the notification were people are going: “Wow that’s great you are HIV positive, hey give me five?” Whatever; nobody. I don’t know I haven’t travelled very far, but I know one thing, I don’t know anywhere in the world were people are cheering for being HIV positive. “Hey, hi, are you HIV positive? Ah, welcome to the club.” And everybody is having fun going into the taxi, going to the movies, having a braai: “How is your AIDS?” Nobody does that.

Zackie Achmat: In April 1999 the Minister of Health proposed to make AIDS notifiable, this means that in future healthcare workers like doctors and nurses, will be required by the law to disclose an AIDS patient to different people. These people include immediate family members, care givers, anyone who handles a dead body, local health authorities, Director General of Health. The government claims that reporting to local authorities will be anonymous, but how can notifiability be anonymous if family and care givers will be informed. The government says that AIDS must be made notifiable to create openness, protect care givers and undertakers, collect accurate data on the diseases and enable healthcare authorities to plan for the diseases. But will notifiability achieve these goals, other diseases such as TB also are notifiable but experts say the data obtained is unreliable.

Jo Barnes (University of Stellenbosch): In some areas of the country TB’s notification is abysmally low. It places the onus for providing the government and the planning authorities with their necessary information and data on the healthcare worker; already overburdened and rushed healthcare workers.

Dr Ivan Toms (Director of Health, Cape Town Municipality): But it’s not going to be accurate data, it’s not going to be data that we are going to really use, in our planning, what’s going on, anonymous antenatal testing gives us a much better role; view of the spread of the epidemic, where we are heading with HIV and ultimately with AIDS.

Jo Barnes: The information obtained form notification will give you an idea of the infectivity situation anything from five to ten years ago.

Dr Ashraf Grimwood (Chairperson of National AIDS Convention of SA): The only way, quick way we can get in monitoring programmes is actually looking at the antenatal and the mother-to-child surveys because then we can see, yes, the numbers are coming down those programmes are working.

Zackie Achmat: Notifiability will be costly because extra staff and equipment will be required. Where the doctors and nurses would have the time and filled out the forms and trace people is also questionable?

Dr Kristy Donald (Community Services Director, Michael Mapongwana Community Health Centre): Doctors will see between forty five and sixty patients on average a day, um so you have very little time with each person.

Sister Jean Isaacs (Retreat Community Health Centre): I will not be able to leave my present hours of duty to go out to the community to inform the families that will have to be done after hours.

Pumla Bassie (Social Worker, Michael Mapongwana Community Health Centre): If Dr Zuma still wants to go on with this; they must have more people who will be working in the HIV/AIDS section only because it’s going to be a hell of a job to be done by only one person or two people in the Khayelitsha area.

Dr Kristy Donald: It’s very difficult to trace people in the Khayelitsha community because the majority of people don’t have telephones for a start. So, um it involves trapping around on foot basically.

Sister Jean Isaacs: How do I know if the patient is giving me a correct address, this happen before that we go to areas and we are sitting with an incorrect address and the client is completely lost.

Zackie Achmat: Many feel that AIDS should be made notifiable to protect the public.

Dr Nono Simelela (National Director HIV/AIDS & STDs, Department of Health): The healthcare sector is unable to give the support and the care for the people affected by the illness, lots of people get discharged home, they get looked after by their own family and they die at home and their bodies are prepared by close family members. We believe at least that sharing that knowledge of what is wrong with the person and being able to take the necessary precautions for other family members, looking after the ill person, would, would… and first prevent the infection form being spread and allow the person to make the necessary preparations and the family to be ready to cope with the impact of the diseases.

Sister Stella Jordan (Retreat Community Health Centre): A young girl that had a caesarean section at Groote Schuur the wound wouldn’t heal, she was referred for us for further treatment and she did know what was wrong with her. I don’t know whether she was hiding it and now, she didn’t know what was wrong with her, she didn’t tell the family what was going on, so the mother kept on coming with her to bring her for dressings and so on. Now the mother was asking us why is the wound not healing, so we asked her didn’t Groote Schuur tell you what was, what is wrong, why the wound is not healing and so on? No the mother said that she doesn’t know but she thinks what ever they did to her this operation wasn’t a success and so on. But then we couldn’t say anything.

Zackie Achmat: Experts warn that notifiability will give us a false sense of security; people will then only take precautions against HIV after they had been notified that someone has AIDS.

Jo Barnes: One can never be sure, that the country with such high HIV positivity rates that you are treating somebody who is not positive, you have to institute what we call universal precautions and universal precautions means amongst other things treating every patient as if he/she is positive.

Dr Ashraf Grimwood: Is when the infectious bodily fluids you got to use universal precautions, you gotta use gloves, so wherever it is, undertakers, whatever the person has died of, if there’s blood around the place or if there’s abdominal fluid or any other infectious tissues, they gotta use gloves.

Zackie Achmat: Notifiability will not protect people however it might harm those most in need of care.

Sister Jean Isaacs: Because of the stigma attached there is the possibility that they will be ousted by the community, they will be ousted by their friends, by their family and various organisations in the area.

Zoelfah Hardien (Lay Counsellor, Mitchells Plain Community Healthcare): A six year old girl was diagnosed with HIV and her mother passed away, um, both her parents passed away HIV positive and she lived with the guardian and this guardian basically felt that this child didn’t need treatment because eventually this child will die, she gets a grant for the child and has to send the child to school, didn’t want to send the child to school, making it known at school that this child is positive and everybody knew at the school, the children initially just took the child and says you are HIV positive and you are gonna die and you sick, you can’t play with us, you can’t sit with us, it traumatises that child, that child is still traumatised now.

Dr Ivan Toms: The discrimination that we have seen has occurred within our clinics as well, not only the Gugu Dlamini’s but we‘ve had women who are burdened by their partners, um once they found out that their child died of HIV/AIDS. They will be, are burdened and then they have to fend for themselves.

Dr Kristy Donald: HIV is still a disease that has huge stigma attached to it and people are very worried about that and is a particular problem in a clinic like this, because lots of the staff comes from the community as the patients. And so as it is we have a problem with confidentiality and if we introduce something like notification process it will just make the confidentiality issue that much more difficult to contain.

Zackie Achmat: People from different areas are already going to Mitchells Plain to prevent their status from becoming known in their own communities.

Zoelfah Hardien: We don’t know who that person is, they are unknown to us and unfamiliar with ours and unfamiliar with them. So they come to Mitchells Plain not to be identified

Dr Ivan Toms: You know, we still have problems around employment issues, people losing their job and not being employed, even liberal employers of domestics get worried about their children and so then they let that person go.

Dr Ashraf Grimwood: I think notification will endanger the doctor patient relationship. Um on the one hand patients will be very scared to inform their doctors so a lot of them will not want to come to the doctors only when they are really ill. Umm, they will change their names give falls addresses umm, also I think doctors who feel very strongly about protecting patients confidentiality will also tend not to notify.

Sister Jean Isaacs: I would almost say that they will not force me to inform the patients family, firstly I have my ethics and my codes, I have my constitutional right and at the moment I don’t know whether the specific treatment is available at the primary healthcare level for the specific line. I should be able to give that client some hope that there is assisted medically or financially or in which other way.

Adeline Mangcu: I still cry when I disclose and I disclose five years ago. Think about somebody who never disclosed for the last ten years and then suddenly their family is told.

Zackie Achmat: Instead of leading to openness about AIDS, notifiability might just drive the disease deeper underground. Government should rather try to create an environment were people will feel safe enough to live openly with AIDS. Prevention, care, treatment, openness and acceptance is the only way that HIV/AIDS can be beaten.

Sister Stella Jordan: I don’t think we can just vuma {isiZulu} [agree] and make it notifiable. We have got to have supporting groups and we got to educate people too because if they are thrown out of the houses what are you going to do with them. Have we got homes to send them too, we haven’t got, so I don’t think really we are ready to make it notifiable with out looking at the consequences of it.

Dr Nono Simelela: The responses that we are getting will inform us, you know which is the best way to go, you know, I like the fact that is still open for comments and we still have to sit in the department and really think through, what we found is that perhaps on the side of preparing. Firstly on the health worker for dealing with the notification we are lagging behind. Really we are lagging behind, there are not enough counsellors out there, we need to think through issues about how who is going to counsel the family and who is going to deal with all of those subtle after effects, so we are long way to be flying with this? You know I’m concerned about.

Sipho Nhlapo: Ke bakwethu okuphumile ngesikhati sixoxa no bra Thambo yikuthi uhulumeni wethu usephezukwayo indaba ye HIV ne AIDS. Ngako ke okwamanje inkinga isisabekane nayo ukuthi; {isiZulu} [Yes guys, what came out when we went to chat with bra Thabo is that our government is on top of the issues of HIV/AIDS. But at this time the problem that we are facing is that;] how would you feel if the doctor or nurse informed your family without your consent? If like us you don’t feel comfortable about this idea you still have a chance to make your voice heard.

Mercy Makhalemele: We urge our government to listen to experts, the doctors and nurses working at the ground roots level and those living with HIV and AIDS to reconsider their decision on this issue.

Sipho Nhlapo: Next up is your Beat It! – your guide to better living. In this programme we join Faghmeda and Doctor Steven Andrews about what you can do after learning that you are HIV positive to have a better quality of life.

Mercy Makhalemele: Babukheli bethu ekhaya {isiZulu} [Our viewers at home] uLu and Adeline will be talking to us about the importance of eating correct food to ensure we all stay healthy for longer.

Sipho Nhlapo: And so stay with us.

Treatment Literacy

Faghmeda Miller: Doctor Andrews, five years ago I started getting very ill having night sweats and lost weight and all that, doctors could not actually find out what was my problem. Until one of them suggested an HIV test and okay it turned out I’m positive, but you know I was very shocked and actually angry because how can they just come out and actually ask me to do a test like that? So, what I would like to know is, wasn’t it important for me to like receive counselling before hand?

Dr Steve Andrews: There are a couple of things that are important; the first one is what we call the informed consent; this means that the person doesn’t just say: “Yes, it’s okay you can take my blood”, but they know exactly what is actually going to happen to them and should the test be positive or negative that they know what the result could be. A lot of people could be very, very shocked and as you say angry when the result comes back and it’s not possible with any amount of counselling to reduce that but we can start to open people to realise, that there are things that can help them, there is a lot of hope for people who are HIV positive.

Faghmeda Miller: So, doctor what advice can you give a person that is newly diagnosed as HIV positive?

Dr Steve Andrews: It is important that you take control of it, it important that you stay physically, mentally and emotionally well now that you are HIV positive, you have a choice, you can either take hold of HIV and learn to control it or it can control you.

Faghmeda Miller: But you know some people they don’t really know they have the virus maybe until five or six years afterwards only. Then they get the symptoms that they are actually HIV positive. So, what can I do to ensure that I will basically, I will live a longer life?

Dr Steve Andrews: The HIV germ uses these enormous amounts of your resources in making more of itself, everyday, and so it’s important to eat well and regularly to ensure that you replace those things which are being taken away so that you can stay strong. It’s also important to exercise regularly avoid smoking and drugs and to use alcohol in moderation.

Faghmeda Miller: Eating healthy can also be expensive and also people don’t have the time to prepare proper food for themselves. So, what advice do you have about this?

Dr Steve Andrews: Eating well and eating fancy are not the same thing you can sometimes struggle to get all the best foods but it’s important to try as much you can.

Faghmeda Miller: Doctor Andrews you know, I have learned from my own experience that when I think positively I discovered that my body feels, I will say actually good. So how does stress actually make one sick and how can you avoid it?

Dr Steve Andrews: It is thought that what stress does is cause the lowering immune defences against illness, now is very easy to say to people look, just reduce your stress levels it’s not so easy actually to do that.

Faghmeda Miller: ’Cause people have different stress levels?

Dr Steve Andrews: Absolutely because people have different reactions to stress, some people are more stressed than others. The important thing is to be sharing with other people if you can. When there are people who can help you shoulder this burden of HIV; the stress that you feel can be much less.

Faghmeda Miller: Okay it is cool to join a support group when you are HIV positive but then again it’s not that easy to just come out and say look I have this virus, ’cause a lot of people like myself actually went through that, I actually feel suicidal and to cause a lot of people to reject you. I feel ja, its good to have a support group in fact it’s essential.

Dr Steve Andrews: As a doctor I see a lot of people who come and see me and won’t tell me that they are HIV positive. Also people when you test them leave and you will never see them again, because they either feel too ashamed or they’re either too stigmatised to even talk to you about it. This can waste a lot of time in terms of dealing with their medical problems and in terms of getting them a longer track of living with HIV. Stress in this case, can be a very, very bad thing for them and they are having to live with it all by themselves. So coming out about it can be very, very positive thing reducing your stress.

Faghmeda Miller: So what you are actually saying here, is that being HIV positive does not necessary mean that you’re going to die immediately you can still live long, maybe by living a health life style avoiding drinking, smoking, drugs and all that having support is also essential here, the support of your family, your friends.

Food for Life

Marc Lottering: Mm, no I gotta go now, I really can’t chat. No I will see you Sunday man, Sunday lunch, now this time there is no one coming, so make something lekker, make some breyani, you know what I’m really lus for {Afrikaans} [craving]; some lekker warm custard without the lumps this time nê, in fact maybe you should watch that programme on eTV now; that cooking programme. No man, it’s not just white people’s food it’s amper soos {Afrikaans} [it’s similar too] Kaas Abraham show. Promise? I will talk to you later now take care.

Luanne Epstein: Hello I’m Luanne, welcome to the first addition of Food for Life your guide to healthy eating.

Adeline Mangcu: Hello everybody I’m Adeline, today we are here to cook for our HIV positive friend who has been feeling a little bit down lately, so let’s see what’s in his cardboards.

Marc Lottering: Let’s see.

Adeline Mangcu: Maize Meal, white flour, white bread, white rice, tin food, veggies, tubes and the jam. What else do we get here? Sweets and chips? If I had to eat all this junk I really will be feeling groggy as well.

Luanne Epstein: That’s true Adeline they say we are what we eat. Let’s see if we can place some food magic on our friend here. We bought some nice fresh veggies, which you can never get enough of if you are living with HIV. It’s best to go with the unrefined foods; in other words the food which has not been processed; this foods still contains all their goodness and nutrients. If you are wondering what’s refined and unrefined go for the brown foods.

Marc Lottering: Now who would have thought, now after all this time brown is better?

Luanne Epstein: White foods, like white rice, white bread, white maize meal and white flour have lost much power to strengthen the body.

Marc Lottering: Brown is better and whites have lost their power, interesting nê?

Luanne Epstein: If you are living with HIV it’s especially important to eat unrefined foods because your body needs extra energy and nutrients to help fight the virus.

Adeline Mangcu: I become health conscience now that I’m HIV positive, I check myself everyday that I eat three balanced meals everyday. So all you junk food people who don’t know what I’m talking about you better listen up. Here we have our three basic food groups, the building foods are amasi, Plain yoghurt with the AB on top, beans, lentils, our meat. And in the middle here we have our energy foods brown bread, brown pasta, samp, rice, honey, bali and oats. For our protective foods our fruits and vegetables eat as much of this as you can, a balance meal means that you have a one meal for each group on your meal. One from the building group, one from the energy group and one from the protective group.

Luanne Epstein: So let’s look at our soup Adeline, we’ve got peas as our building food, bali as our energy food and spinach and butter nut as our protective.

Adeline Mangcu: People living with HIV and AIDS must be weary of germs that may be in the veggies and the fruits that they eat. Because our immune system is not working properly we need to be sure that we follow this that we wash our hands before we touch our food and we wash the fruits and veg because there might be bugs and germs.

Luanne Epstein: Look there is a bug on the spinach.

Marc Lottering: Nai [no] man, sies [disgusting] man. {Afrikaans}

Luanne Epstein: By using one tea spoon of bleach in litre of water, you can make a rinse solution, you can rinse; in which to rinse your fruits and veg, in which will kill all the germs and insects that are on them. Okay let’s do a team effort and rustle up this soup.

Adeline Mangcu: Okay now we are finally ready to cook. Bye guys see you next week.

Marc Lottering: Nou waar is die kos? [Now where is the food] I’ll watch next week. {Afrikaans}

Mercy Makhalemele: You know Sipho ukulalela u {isiZulu} [listening to] Luanne, Adeline, Steve and Faghmeda makes me realise once again that we who are living with HIV and AIDS can be in control of our lives.

Sipho Nhlapo: I couldn’t agree more with you Mercy. The more we are informed about this disease the better. Through out this programme we aim to do that, to inform you as much as we can.

Mercy Makhalemele: Bakithi {isiZulu} [My people] we have come to that part of the programme were we dish out praise were it’s due and tell those hindering treatment where to get off. This is our Red Noose and Positive Person Awards and here to present the first award is Marc Lottering.

Positive Person and Red Noose Awards

Marc Lottering: Hi, I’m Marc and I have rushed home early from the barber bar for the first Red Noose and Positive Person Award. Now respecting a person’s confidentiality and privacy about their HIV status is the first step of fighting the disease. Even the United Nations has accepted that and I quote: “People will not seek HIV related counselling, testing, treatment and support if this will mean facing discrimination.” Makes absolute sense to me. So human rights are protected, less people become infected, those living with HIV and AIDS and their families can cope better with the disease. All those even about skinnering [gossiping] about other people’s HIV status or even worse making this type of blabbering compulsory you better take note, so this Red Noose goes to all those doctors who like to discuss their patients’ problems with their buddies on the golf course and also those nurses and lay counsellors working at certain community health centers, yes you know who you are, who are driving patients away with all their skinner [gossip] about other people’s HIV status, also watch out because this week skatties [lovies] it’s the Red Noose for you. And on to more pleasant matters the positive person award must go to that nurse working in the hospital in the southern suburbs. I hope the government will listen to what she’s saying and change their position on notifiability. Yes, I’m talking about you Sister Isaacs from the Retreat Day Hospital. Sister Isaacs came in and told us that nobody will be able to force her to tell others about her patients’ HIV status, she vows to be dictated only by her conscience and until the government has reassured her sufficiently they will step in and care for the HIV positive people who might be rejected by their families she would not inform family members of her patients’ HIV status. You, Sister Isaacs, and all healthcare professionals like you, are a Positive Person this week. Sister Isaac this is for you nê? [right?]. So until next week take heart and don’t forget watch out for the noose. {Afrikaans}

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