Nomfumaneko Yako, 15, sits on her bed the day before she is due to start her first dose of antiretroviral treatment. She was extremely ill and emaciated, with a CD4 count of 46.
“I started to be sick in May this year. I had shingles and then I had diarrhoea, which would not stop. The shingles was treated but then it came back again on the left side of my face. It was said that I must go and do an HIV test. I was told that I am HIV-positive. It was bad for me. My heart was very painful but I did not cry. They told me that I must not be scared and that if I take medication I am going to get better.”
We Are Living Here
This body of work comes from Lusikisiki, a rural part of the Eastern Cape province. Through the stories of four individuals, it documents the innovative Siyaphila La (“We Are Living Here”) project. It had been initiated in the area by MSF, the Nelson Mandela Children’s Fund and the provincial Health Department to demonstrate the effect that widespread access to lifesaving antiretroviral treatment could have on poor, rural communities struggling with HIV. It was one of a number of key projects that established a model for the widespread roll out of HIV treatment across South Africa.
Siyaphila La managed to reduce the costs of treatment significantly. It relied on nurses in clinics rather than on doctors in hospitals, on inexpensive generic ARV drugs, and on the commitment of patients and families to a daily treatment regimen. The project also challenged the social stigma associated with HIV/AIDS by changing the outcomes of infection through treatment. Instead of dreading the disease as a killer—something to be denied rather than faced—the people of Lusikisiki began to see it as a manageable chronic illness.
My aim was to explore, at a very personal level, the meaning of access to treatment through its impact on Lusisiki’s inhabitants over time. While this project began as a National Geographic assignment, I continued beyond that, making a series of four visits to the community over a period of three years.
The stories of each of the individuals begin at the start of their treatment and then follow the changes that took place in their lives over the following years. Each had taken the brave decision to share their experiences publicly, to help fight the disease and to prevent others from being infected.
Nomfumaneko Yako was a 15-year-old schoolgirl who was already very ill when she began treatment. Sadly she died just a few weeks later.
Nomphilo Mazuza, 27, a mother of two boys, had a CD4 count of just seven when she began treatment. She was painfully thin, very weak and was also struggling with multidrug-resistant TB. Over time, her weight returned to normal and she recovered her health. Three years after beginning treatment, she was able to look after her sons as she wished to, and had dreams of becoming a nurse.
Nozamile Ndarah, 22, began treatment two months before these photographs were taken. Even in this short time, she had experienced a dramatic improvement in her health, finding herself much fitter and stronger. A mother of four, she was deeply relived to discover that all of her children were HIV negative.
Zamokuhle Mdingwe, 7, lost his mother to HIV when he was six years old. With treatment, his health improved significantly and he found himself able to attend school more regularly. Shortly after beginning treatment, he shared his story at a public meeting on World Aids Day.
Nomfumaneko’s sister helps her to bathe in their family home.
“Now I cannot do anything. I am very weak. My sister helps me to wash. It is difficult for me to walk even a few steps.”
At the treatment clinic, Nomfumaneko is given her medication by a nurse, who explains to her how to take it.
“I am now starting my ARV treatment. The counsellor from the clinic has taught me the names of the drugs. In the morning, I will be taking Nevirapine, 3TC and D40, and in the evening I will be taking 3TC and D40 only. My aunt is going to be the one helping me to take the medication. I am very happy to start treatment and I have hope that I will become better.”
Just a week after starting her medication, Nomfumaneko needed to go back to the clinic following a night of chronic diarrhoea and extreme dehydration.
“In the first week that I was taking ARV medicines I became sick as I had diarrhoea I could not control. I lost my weight and my energy, and I had no appetite. I was taken to the hospital, where I was put on the bed and the nurses gave me a drip in my arm.”
Too weak to walk, Nomfumaneko’s aunt carries her to the road, where they will find transport to the treatment clinic.
Back at home, Nomfumaneko rests with family members around her.
“It was very bad to be at the hospital. I am better now, apart from the chest pains when I cough. I am now feeling stronger than before. My family is supporting me. They come to sit with me every time I take my medication. I feel very happy because they are showing me that they really love me.”
Nomphumaneko takes her antiretroviral medication.
“My heart is very sore about being out of school now, because I am very interested in learning. My favourite subjects are mathematics and physical science. I want to go back to school when I am better so I can learn to be a nurse. My dream is to help other people who are very sick in the same way that the nurses are helping me now.”
Nomfumaneko and her family gather for a portrait soon after she has taken her first dose of medication. Her grandmother, seated next to her, had just prayed for her recovery.
Shortly after her death, Nomfumaneko’s aunt holds a picture of her, taken before she had become unwell.
Nomphilo Mazuza, 27, began antiretroviral treatment in September 2004 with a CD4 count of only seven. At the time, she was close to death and her body was heavily emaciated in a manner typical of the final stages of AIDS.
“I started getting very sick this year. I had backache and a fever. I also had vaginal warts. I thought I must do an HIV test because I was losing weight. I tested HIV-positive but I was not shocked. I also found out my CD4 count is seven, and this means I have almost no blood cells left to fight the disease. That’s what shocked me.”
Nomphilo stays warm by the fire, surrounded by her children and other relatives.
“I am staying with my mother and father. My mother is taking care of me. I have my bedroom there, but because it is cold I have come to the kitchen hut to sleep by the fire.”
Nomphilo, unwell, with her two sons.
“Now I have started using my pills, it is giving me the hope that I will live longer. With this medication, I can see my future is now bright.
I am feeling better. I was very weak in my joints, but now they are becoming stronger. I also have pain when I swallow. Even if I am taking water it is painful. My mum is now worried in such a way she has lost hope. She does not think I am going to get better. I must encourage my family that I am going to become better. I still have hope that I will recover.”
Nomphilo bathes in her home. Six months after starting treatment, she was still suffering from the effects of multidrug-resistant TB.
“I am feeling better now, but the TB is a problem. Before it was very bad because I couldn’t even move. Now I have energy, and I can walk. I can even cook and clean the house. I still can’t do hard jobs, but I can do little things. When I started the ARVs my CD4 count was seven and now it is 150. Without them I would be dead by now.”
Just over a year after starting treatment, Nomphilo had visibly improved, although she was still struggling with multidrug-resistant TB.
“My little boys are now eight and seven. They always help me. They say, ‘Mummy, here is some water’, and get the pills and give them to me. I just hope God can keep me for a long time so I will be with them.”
Three years after starting treatment, Nomphilo carries her shopping in the centre of Lusikisiki town.
“After being sick for so long I am now healthy again. I have been taking the ARV drugs and having TB treatment for three years now and I feel like my life has come back. I am happy because I can be a proper mother to my boys again. Last week I went to the supermarket and saw an old friend. She almost fainted when she saw me, because the last time she saw me at the clinic she thought I would not be in the world much longer. Now I am healthy and fit.”
Nomphilo stands with her two sons Lindithemba, 10, and Pumlane, 8.
“My dream for the future would be for somebody to take me back to school, because I am not educated. I would like to become a nurse as I want to help sick people in our country, just like I have been helped.”
Nozamile Ndarah, 22, stands outside her house with three of her four children. It is one year since she was diagnosed as HIV-positive.
“I decided to get an HIV test because I was getting bad diarrhoea, back pain and headaches. When they told me that I was HIV-positive I was very sad. I cried and cried a lot and then I felt dizzy, so they had to hold me. I was thinking deeply. ‘If I die,’ I thought, ‘who is going to take care of my children?’
“Last year, after I tested HIV-positive, I phoned my husband to tell him this news. He then told me that yes, he had already tested, he is HIV-positive as well, and he is already getting ARV treatment from the main hospital. I was very angry with him. I asked him why he came home with such a big disease when I had small children to bring up. He said that he was afraid to tell me that he was HIV-positive.”
Nozamile sits inside her one room house with her daughter. It is a year since she began treatment.
“I have learnt, in the support group, about the side effects that can come with these drugs. Sometimes with Nevirapine there can be a skin rash all over the body. With 3TC there can be nausea, and d4T can cause painful feet. This does not happen with everybody, but I am glad to know so I will understand if any of this happens to me.”
Nozamile takes a break from painting her house to take her medication. Her medication had recently been changed to the generic fixed-dose combination drug, Triomune, which replaced three separate pills. This would make it easier to take, so she was pleased to make the change.
The family journeys to the treatment clinic to have all of the children tested.
“The day I went to Xurana Clinic to start my ARVs, I decided that that same day I wanted to have all my children tested for HIV as well.”
The counsellor explains the test to the children.
“The first thing that happened was that the counsellor explained to the children how they were all going to be tested. Then she had a small machine that took just a drop of blood from their fingers.”
The test results for the children are all HIV negative.
“The counsellor put the blood on a small cardboard strip, and then we had to wait for 15 minutes for each child. We were watching to see how many lines there would be — two means the person is HIV-positive. But with each of my kids we waited the necessary time and there was only one line. That meant that all my children tested negative. This made me feel very, very happy as I gave birth to them and they are not infected. They will be able to lead healthy lives.”
Nozamile fetches water from a local stream with her daughter on her back.
“I am free in my heart. This is because I am feeling very healthy. Before I began the pills I was too weak to carry a bucket of water from the river to my house. I used to send children to fetch water for me. Now I can carry a 25-litre bucket on my head and carry my baby on my back at the same time. I have been building a new room on my house, and I have been strong enough to lift the bricks to help the builder.”
Nozamile sits with her children as they eat around a fire at home.
“I now have the strength to look after my children properly. I love my kids and I feel like I am a caring mother but before, when I was sick, I used to get angry and shout at them. It is so difficult to take care of four children when you are feeling sick. Now I know I am a very lovely mother.”
Nozamile irons her HIV-positive T-shirt before going to a rally.
“Some people here in the village have been saying bad things about me having this disease — saying that people should not share a plate of food with me. This has hurt me, but I do not care about them. I have told myself that this disease is like other diseases. I don’t think I should be feeling shame about suffering in this way. I have decided that I will tell everybody that I have HIV. I want to live a better life, so I do not want to be hiding something like this. There is nothing for me to be ashamed of so at meetings, or in church, or at funerals I just talk freely and tell everyone that I am living with HIV.”
Zamo, 7, stands in front of his grandparents’ house shortly after beginning his treatment.
“My mother died last year, and I was very sad. She had AIDS, and I got it from her because she didn’t know she had AIDS and she breast-fed me. Now I stay with my grandparents and cousins. They take care of me.”
Zamo leaves home with his grandmother to go to a meeting for World AIDS day where he shared his story.
“I was told to stand and hold a candle, I told them that every day I am taking my pills. I was shy in front of so many people, but I was proud too, because we went there with some pupils from my class. They came to see me talk.”
Zamo wears an ‘HIV-Positive’ sweater as he travels to the World Aids Day meeting with classmates.
“It was nice to travel with them in the bus. We were singing all the way. I think they love me.”
Early in the morning, Zamo sits at the entrance to his grandmother’s hut and takes his medication.
“After these months of taking pills, Zamo is stronger. When we took him to the World AIDS Day meeting, I was very proud to see him speak. I saw that some people were crying when they heard what he was saying. I was so happy that I stood up and danced with the other people,” Mathembisile Mdingwe, Zamo’s grandmother.
After a year of taking medication, Zamo, who is now healthy enough to attend school regularly, gets dressed.
On his way to school, Zamo jumps over a donga. These are craters caused by poor land management and soil erosion.
Zamo stands in the local soccer field, two years after starting medication.
“Every morning when I wake up, I take my pills. I have been taking them for some time now, and I feel stronger. I can play ball better and run faster. At school I am finding I learn better. I am happy. I think I will live a long life.”