Nine HIV-positive people, who are taking part in anti-retroviral drug trials in the Cape, tell their stories in internationally acclaimed photographer Gideon Mendel’s focus on HIV/Aids in South Africa
My name is Nontsikelo Zwedala. I am from Cofimvaba in the former Transkei. It is a poor rural area and there are no jobs. I have been in Cape Town for four years. I am 31 and have one child. I was diagnosed with HIV in 1998. At first I did not understand when a doctor suggested a test, but then said I did not have to, so I did not go. Later when I was very sick and bed-ridden I was taken to the doctor again. The doctor said people must take me to the hospital to get a death certificate because I was almost dead from Aids. I was taken to the hospital. I was angry with the doctor because he did not make clear to me what HIV/Aids was all about. When I came back from the hospital the family I was living with chased me out they were relatives. Then I went to the clinic and reported my situation. Some nurses came to the house to try to talk to my family, but they were angry because I had reported them. I went home to the Eastern Cape. Then my boyfriend called me back to Cape Town and I went to live with him. We stayed in his house in Nyanga for two years. He died in 2000 because of Aids.
After that the doctors told me I was very weak. My weight was 42kg, down from 76kg, my CD count was 14 and my viral load was three million. So they suggested that I take part in trials for anti-retroviral drugs. I started in April last year with the Lung Institute in Observatory. The last time I was tested my CD count was 200 and my viral load was undetectable. My weight is now 65kg. I have been on the drugs for nine months. Before I went on the drugs I was ill and could not take care of my son. I was very thin, my skin was bad and I had lost my hair. I had fungal infections on my hands and feet. I had miliary tuberculosis [TB] twice. I was afraid I was going to die. When I began the anti-retrovirals I was afraid there would be bad side effects, as I had heard in the media they were very strong and had bad side effects. So I was afraid both ways afraid to die and afraid to take the drugs.
When I started taking the drugs I had some side effects. I had a rash on my face and the liver enzymes in my blood were high. So for two weeks I took nevirapine at a low dose and then went back to a full dose. I had some tingling in my feet but took another drug to stop that. After two months the side effects disappeared and I started to feel healthy and better. I picked up weight and began to live a normal life. If I had not taken anti-retrovirals I would not be here and there would be no one to take care of my son as my mother is too old.
I feel bad and angry because I know there are many people with HIV who do not get access to anti-retrovirals. There are the drugs now that can help them to live a long life but our government does not want to provide us with the treatment. People like me who are on clinical trials have only three years of treatment, after that we don’t know: we may have nothing. It scares me as I could develop a resistance and it could make me very sick. Every day I have to take three pills in the morning and three at night. At first it was not easy to stick to that, but now that I am used to it I never forget to take my drugs. My son understands my situation and reminds me to take the drugs.
I am concerned about my son being stigmatised because everyone in the community knows my status, but we do have a lot of support and I hope people might also want to help them because of my situation.
I believe the government should provide treatment for everybody. Thabo Mbeki should know that HIV causes Aids, and it is killing people. He should know that it can be treated to allow people to live a long life with HIV. He must not stick on the resistance and side effects only. If he cannot afford to buy the treatment from the pharmaceutical companies he must talk to them to lower their prices because I know their prices are much too high now. There are options like generic producing and parallel importing. He can reduce military spending because there is no war in South Africa but people are dying of Aids.
I joined the TAC [Treatment Action Campaign] in 1999 and have learned a lot through them. I have received education about HIV/Aids, treatments, positive living and the politics of our situation. I am part of a project called Ulwazi, which means knowledge. We go to clinics, trade unions and schools to talk about HIV/Aids. I talk to people about treatment and I disclose my status.
I live here in Kosovo squatter camp in Phillipi. My neighbours know I have HIV and that I am on anti-retrovirals. I feel I have no stigma here as my neighbours support me there are very good people around here. At first some were scared I would infect them. Later they began to understand that Aids can’t be caught by helping and caring for people.
I live in this one-room shack with my sister, my cousin, my friend and my son, Pikolomzi. He is 10 and his name means “he is the only son of the house and will protect the house”.
My name is Vuyani Jacobs. When I tested positive I was not ill. I was taking a test for an insurance policy so there was no counselling at all. At that time I was a bank clerk. After taking some time off, I told my boss. That was my biggest mistake. Everything became strange and people learned about my status at work. I tried to commit suicide by taking an overdose of pills. When I began to get dizzy I realised that I did not want to die so I ran to a clinic and they saved me.
I later became involved with one of the early support groups for HIV-positive people. It was strange for me because I am heterosexual but there were gay men counselling me. Those men helped me to understand HIV/ Aids and how to cope emotionally. As the years went by I started getting very sick and lost a lot of weight, dropping to 23kg. In September my CD4 count was 117, which means I had full-blown Aids. I was given anti-retrovirals by the Mdcins sans Frontires [MSF] project in Khayelitsha. After three months of having AZT, 3TC and nevirapine, my viral load became undetectable. My weight shot up to 64kg. I can now walk long distances and remember things like telephone numbers. My tablets, I never forget them. They are like my underwear.
When my last girlfriend died, I decided to be open because I did not want to infect any other woman. I feel guilty because in the past I did things with a clear knowledge of my status. I hope that by being open now, I can encourage others not to make the same mistake. Stigma makes people infect others. Nobody would want to carry that burden.
My girlfriend now is also HIV- positive and is open about her status and that makes me feel more comfortable. Khayelitsha is a very hot, windy, bleak place. Sometimes to escape that we go to Camps Bay to watch the sunset. An important way to survive if you are HIV-positive is to maintain your spirit.
I stay here in site C, Khayelitsha, and I am 29 years old. In 1997 I started getting sores all over my body, particularly in my armpits. I did not know my status then. In June the same year I fell pregnant. I had a premature baby. My child lived for three months. She had a problem with breathing. I started getting shingles and I had diarrhoea for a month. I had TB and lost a lot of weight. In June last year I had TB again and was tested for HIV. My CD4 count was 11 and I had full-blown Aids.
When I had that test I started to receive drugs from MSF. My weight was 45kg; my viral load was 9,99-million. They started me on nevirapine, 3TC and AZT, the widely used triple-therapy combination. The only side effect was a bad rash, but now it is much better.
After three months I got anaemia so I was changed to a different drug regime for 32 weeks, and then moved back to the first one. Now my CD4 count is 165, my viral load is undetectable and my weight is 64kg. At the moment there is nothing that makes me sick. I can walk long distances, I can work, I can do anything.
I would love to show my face, to show people how well I feel. But I cannot because of my personal circumstances, so I will show my hands so that people can see they are strong and healthy and can do all the work I used to do. Now I can do all the household chores. I cook, clean and do the laundry. I enjoy these chores now, thinking how I used to find it difficult to get up from my bed.
Those who mock and laugh at people with HIV should be tested, but most will be too scared. I want to invite the president to come to Khayelitsha for just one hour to talk to us and see how people taking anti-retrovirals look. I would like to thank the MSF staff and clinics. If they were not here I would be dead now. I can’t show my face because I need to protect my husband. He has not told anybody that he is HIV-positive so I do not want to cause him problems.
My name is Thandiswa Ngqaneka Yibatha. I am 31. I come from Cofimvaba, a poor village in the former Transkei. I came here in 1986. I used to have a job working for white people in Rondebosch, cleaning and doing laundry. I was retrenched because the family moved. I never married.
I was first sick in 1999, with TB, before the birth of my second child. He was called Unathi, which means “you are with us”. For three months he had excessive diarrhoea and vomiting and inflammation of the throat. He was in and out of hospital until his death at seven months. He was diagnosed as having HIV. When Unathi was ill we were both tested, so I knew we had HIV, but I could not tell my boyfriend. After Unathi died I tried to see if I could tell my boyfriend about the HIV. He said he would take a gun and shoot me and himself if we were HIV-positive, so I decided not to tell him.
My boyfriend insisted on having another child, and in 2000 I gave birth to Ayanda. His name means “we are growing”. He had a problem with his kidneys, his head was too big and I was told he would not be able to urinate. He lived for two months. Unathi had died in December 1999, and Ayanda was born on August 30 2000 and died in October. So I had two children die in one year.
My boyfriend was a taxi driver in Durban and was shot and killed in taxi violence in October last year. When he died I joined an Aids/HIV support group and began to tell people about my status. I want to be completely open about it because I hope that if others follow my example and get tested their children will not have to suffer as mine did.
I joined the MSF anti-retroviral programme when I had severe chest pains and constant thrush in my mouth. Since then I have been very healthy and have not had many side effects. My mother reminds me every day to take my medication and my new boyfriend knows about my status and supports me. We are sexually active and use condoms.
Now I find it easier to talk about my status. But I have a lot of sadness and I regret that I had a second sick child because I was too afraid to disclose my status that was the sad price of the stigma. I keep photographs of Unathi and Ayanda on my wall. It makes me feel better to look at them every day. It was hard. With Unathi I did not know about HIV and did not expect him to die. With Ayanda I knew he would not stay here long so I insisted on photographing him. I have a 10-year-old child who is HIV-negative. Taking good care of him and receiving his love is the most important thing in my life.
Every morning I go with my sister, my cousin and a friend to fetch water as there are no taps nearby. We have to walk about 2km using a supermarket trolley to hold our water containers. Before, when I was ill, I could not stand to fetch water, so they used to fetch it for me. Now I am strong enough to take my turn in pushing the trolley to collect water.
This is a very small shack that we live in. You can see the holes in the roof, so when it rains a lot of water comes through. It is very cold and not healthy. Also, when it is hot and sunny, the corrugated iron sheets get hot and sometimes it can be too hot to be inside during the day. I don’t have a job now, I live on my disability grant.
I am 33. I come from Butterworth in the former Transkei. I have been in Khayelitsha since 1994 and in 1997 I was diagnosed as having HIV. I was pregnant and gave birth before time. My child was not healthy for a single day. She had diarrhoea and was in and out of hospital until she died in 1998. Her name was Sinethemba, which means “we have hope”.
The year after she died my hus-band chased me away from my home because of HIV/Aids. He did not like the idea that we might both be HIV-positive. I asked him to accompany me to the hospital for a test and he was HIV-negative. I had high blood pressure, terrible headaches and diarrhoea and was vomiting. My body was covered with a terrible rash. My immune system was collapsing.
In July last year I started on anti-retrovirals. Then I weighed 73kg; now I am 93,5kg. My skin problem has gone. I find it easy to take the drugs. I had some side effects: nausea, vomiting and a rash on my face. But now all those side effects are gone and I feel strong, just like a normal person. My husband is back with me and we use condoms to prevent any sexually transmitted disease. He is healthy.
In June I plan to tell my mother about my HIV and then will disclose my status in public so I can help educate people. Whatever people say I will not mind because I know I will be doing the right thing. If they are hostile it is their problem.
I choose to show my medication because that is what helps me. I wish everybody in South Africa would be tested and if they test HIV-positive they should get the right medication. I am surprised the president says these drugs are toxic. I cannot agree because they have given me life. I would like everybody with the disease to have the same access to treatment that I have had.
I was first diagnosed in 1998, when my girlfriend was very sick. She was at Tygerberg hospital, where she tested positive. She asked me to test as well and I tested positive.
I have been going to Tygerberg clinic since I have known my status. I used to have lots of sexually transmitted infections. They could not get rid of them. Last year, in July, I was very sick with cryptoccocal meningitis and I got flucanizole to cure it. I had a terrible headache, I could not see well. It felt like the veins were bursting out of my head.
Tygerberg referred me to MSF here in Khayelitsha and they started looking after me with anti-retrovirals. At that point my CD4 count was 38. I had full-blown Aids; my viral load was 1,2-million. I was given AZT and 3TC with nevirapine but I began getting a blood problem so I was changed from AZT to ddI with d4T and Efavirenz. This combination is working for me now. My weight then was very low. It was 38kg; now it is 57kg. I had a lot of memory loss but my memory has come back. My viral load is now undetectable and I will get my new CD4 count results next week. These drugs have made a huge difference in my life.
My girlfriend is also positive and we talk openly and share things. I plan to tell my family before I reveal my status in public, but I do want to reveal my status eventually. I am 36 and the father of one child who is HIV-negative. I was a machine operator in a factory before my illness. Now I am strong but unemployed. If I could get a job I could work very well.
People should not be afraid to come forward and get tested because the sooner you know, the better. I dispute the stance of the government that these drugs are dangerous, because I am alive. Thabo must stop his drunkenness and wake up to reality. I would like to say thanks to MSF. Without them there would be no life in my body now.
I choose to show my daily drug-adherence sheet, which I have to fill in every time I take my medication. People must know that a poor person like me living in a shack can take these drugs properly. They are my chance to live.
My name is Mathew Damane. I am 25 years old and I live in Khayelitsha. I was diagnosed in 1997 when I had such bad flu that my family took me to a private doctor. He recommended a test but was not specific as to what it was for. I tested positive but received no pre- or post-test counselling. Last year I started with the MSF programme of receiving anti-retroviral drugs as my CD4 count was 138 and viral load was 95000. I had all the side effects at first: dizziness, headaches, nausea, anaemia and the rash on my face. But all those things did not stay long. In September last year they tested my viral load and the results came back undetectable. My CD4 count in December was 253. This programme has saved my life.
Because I have been helped so much with this medication, I wish I could share it with all the others in South Africa who face the same problem. Recently I went with a delegation of people from MSF and TAC to Brazil. We imported some generic anti-retroviral medicine in defiance of the drug company patents, as these are so much cheaper in Brazil. I believe that South Africa should do the same as Brazil and produce generic medicine for everybody. To do that our government must implement a compulsory licence so that we can produce it locally.
In Brazil I saw a country that is not rich, but everybody there has access to anti-retrovirals. That has had the effect of reducing the stigma and bringing down the rate of infection. South Africa could do the same, but it depends on the will of our government. In Thabo Mbeki’s speech last week, he gave some hints of his attitude changing. This gives me hope but the big question is what kind of action will follow.
The MSF programme, which is a trial providing anti-retrovirals to people in Khayelitsha, is working very well. It shows that people living in poor squatter communities can take these drugs properly and benefit from them. There are just millions more waiting in the queue.
My name is Pumla Dladla. I am 23. I come from Tabankulu in the former Transkei. I have been in Khayelitsha since 1998. I came here because my child Snentlahla was sick. The hospitals in Cape Town are much better. There is no care in the Transkei. My child was sick from the moment she was born in December 1997. I took her to the health clinic and they referred her to the Red Cross Children’s Hospital, where they found she had pneumonia and TB. They tested her for HIV and she was sent to Conradie hospital for a week. I saw in a folder that she had HIV I saw for myself, they did not tell me. I had no idea what HIV was.
In May 2000 I was very sick. At Red Cross they took my blood and found that my CD4 count was 129. I was referred to MSF. Here they found that I had TB and treated it for eight months. Then last year they came with this programme of anti-retrovirals. Dr Herman told me about this programme. I decided I wanted it because I don’t want to die. At that point my CD4 count was 9. My mother was dead, I had no parents and if I was to die who would take care of my child? When I started the anti-retrovirals my viral load was 1,11-million, but after three months it was undetectable. Now my CD4 count has increased from 9 to 92 and I weigh 114kg. I wish that all people with HIV could have this treatment.
I would like to encourage others to go for a test so they can be safe and use condoms and go to the clinics for help. I now live alone my boyfriend suspected I was having affairs with people in the support group because I had their telephone numbers and so he threw me out. A friend took me into her house.
I have told people about my status because I want them to know that HIV is here and it is killing people. I would rather talk honestly to my neighbours than have rumours going around. I am open but do not want my child’s face to be photographed because other children might stigmatise her and not play with her. Her name Snentlahla means “we are lucky”.
When I had my child I did not know I was HIV-positive. I received no Aids education. If I had known about it I would have wanted to take the drug nevirapine, which can stop the virus passing to the child. I would have done anything to save my child. Now I don’t want another child because I don’t want to risk passing on the virus. Also, if I was to be pregnant with another child, my CD4 count would go down again and I do not want to die so fast. I want to stay alive to take care of my child and these drugs are my only chance.
My name is Ncapai Thobani. I am 31 and come from Matatatiele, a rural village in the former Transkei.
In 1997 I was very sick. Diarrhoea and vomiting was my daily bread. I was taken to the Mary Theresa hospital. When I got there Iweighed 21kg. I slept in that hospital for six months and was then discharged. At that hospital they had tried to talk to me about HIV, but I did not want to know. After that I was admitted to Sebokeng hospital and then my mother took me to another hospital. I stayed there for three months and they told me the same story that I am HIV-positive.
Then in 1998 friends asked me to come to Cape Town and the doctor sent me to Conradie. I had water in my lung and spent four months at the hospital. Then I stayed at Groote Schuur hospital for two months and came to live in Khayelitsha. I was sent to the state hospital for eight months’ TB treatment. From last year I was able to get the anti-retroviral drugs here at MSF in Khayelitsha as my CD4 count was 174. I was very ill and my viral load was 240000. They gave me AZT, 3TC combivir and nevirapine. Since then I have felt better than I have for many years. After three months my viral load was undetectable. I have just been told today my CD4 count is 371.
I have a small stall selling fruit and vegetables. I often think that a year ago I could not speak or stand or wash myself. Three times a week my sister had to wash and feed me. I take the train to the market at 4.30am to get the best early-morning bargains. Now I feel like everybody else. I will spend anything between R300 and R500 buying potatoes, tomatoes, onions, butternut and different fruits for my stall. From that I can make a profit of maybe R150. It is good to feel alive and earn some money, which I use to support my son in Transkei.
Now I am not thinking all the time about HIV. I do not bury my dreams. I continue with my dreams. I want to show my fists in the photograph because I want to show that I am feeling strong.
Gideon Mendel’s latest book, A Broken Landscape, will be published by M&G Books in March. Please direct any queries to M&G Books on Tel:(011) 727 7000, or e-mail [email protected]