Guardian in South Africa: A new hope
Zamokuhle 'Zamo' Mdingwe: 'Every morning, when I wake up, I drink my pills. I do talk to my friends about taking these pills, and they are happy to see me stronger.' Photograph: Gideon Mendel
With its rolling green hills and traditional African huts, the landscape of Lusikisiki is idyllic. But it conceals a painful reality. Today, in Lusikisiki's antenatal clinics - in the Eastern Cape province of South Africa - one third of pregnant women test positive for the virus that causes Aids, a figure that suggests roughly 10% of the population are infected, a minimum of 15,000 people.
It is a remote, underdeveloped area, one of the poorest in the country, traditionally a recruiting ground for migrant workers. Here a remarkable project is under way: antiretroviral drugs are being distributed to the most sick - a potentially life-saving treatment that is commonplace in the west but available to only 8% of those who need it in Africa. The project, called Siyaphila La - "We are living here" in Xhosa - was set up by Médecins Sans Frontières (MSF) South Africa, the Nelson Mandela Foundation (Mandela was born nearby) and the local health department.
Over the past two years the project has put more than 1,100 people on antiretrovirals. The hope is that most of the medical work can be carried out by nurses rather than doctors and a model will be established for bringing treatment to rural communities across Africa. Initially patients were given three separate pills; now they are given one generic pill containing three drugs, a much cheaper medication, costing $270 per patient per year.
For 13 years, as a photographer, I have documented the effects of Aids in Africa - on individual lives, on families, on whole communities. The statistics are terrifying - more than 29 million people across the continent are living with HIV. These days I try to make images of the normality of people's lives. I made three trips to Lusikisiki, first in September 2004, then in November of that year, and again in October and November of this year, to see how those given treatment were progressing.
All the people I photographed made the decision to be completely open about their illness in their family and their community. This gave them great strength.
Nomfumaneko, a 15-year-old schoolgirl, was extremely sick when I first met her. She never went back to school. She proved too weak to rally when given the drugs. Her death was a devastating disappointment for her family. It was a reminder that these medicines are not a cure, nor are they a long-term solution to the Aids crisis. They are just an important step in helping millions to stay alive. Around 10% of those who start this treatment die, often because they have started too late in the progress of the disease.
Others who began their antiretroviral treatment at the same time as Nomfumaneko have been much luckier - their lives are being transformed. On the following pages they tell their stories. HIV is no longer only about death, it is also about hope. The word Lusikisiki is said to mimic the sound of the wind blowing in the reeds. Perhaps this wind will soon be heard throughout the continent.
September 2004 My mother passed away last year. I was very sad. She had the virus called Aids. I am now staying with my grandparents and my cousins. At school I am in grade one. My favourite subject is spelling. I want to be a teacher when I grow up.
I have been sick with chest pains and I am coughing a lot. My grandmother took me to the clinic and I had the test done. They took blood here in the finger. It means I have Aids. Every week I go to the support group at the [Xuarana] clinic. I like going as I meet other people with this sickness. There we are taught about medication and we sing. I like the singing. At the clinic I was given the drugs. I was taught there is 3TC, Nevirapine and d4T. I am happy, as I will now live a long life.
Zamo's grandmother, Mathembisile Mdingwe, says: "Zamo's mother, my daughter, came home from Durban last year. She was very sick. She had an HIV test and the doctor filled in the form for a disability grant. But it was too late for her. Zamo's father is alive but he is in Durban and also very sick. He does not help the boy. It is very difficult. I am not working and I don't even have an income. I sell this grass you see here, for the huts."
December 2004 I am stronger. I can play the ball much better now. I talk to my friends about taking the pills, and they are happy to see me stronger. At school, I am finding I can learn better, and often know the answer when our teacher asks a question.
November 2005 I am feeling very, very better now. Sometimes I do still have a cough, but I do not cough like before. Then I was coughing all the time. I can play soccer much better now.
Zamo's grandmother says: "So far, there are no difficulties with Zamo's treatment. I think it is going well. My husband died this year, so now there is no one in this house who gets an income. The doctor from the clinic did help us to apply for Zamo's [disability] grant, but when I went to check if it had come, they said I must still wait. I am responsible for three grandchildren. It is very painful for me when I cannot find food for them. My hope for the future is for my children to pass in school and become something in life."
September 2004 I started to be sick in May this year. I had shingles and then diarrhoea. The shingles was treated, but then it came back again on the left side of my face. It was said that I must do an HIV test. I was told that I am HIV positive. It was very 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.
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. Tomorrow I will be going to the clinic where I will start my treatment. My aunt will accompany me as she 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.
September 21 I started my ARV [antiretroviral] treatment today. I had to queue for a long time until I went inside to see the nurse. The first time I took the pills, my family came to sit with me. I feel very happy because they are showing me that they really love me. I think I will get better and then be healthy again.
September 25 I am feeling stronger. Before I was sleeping all the time, but today I am planning to wake up and go around the yard.
September 30 After taking the medication for nearly 10 days, I am feeling better. But in the last week I was very sick as I was having diarrhoea I could not control. I was taken to the hospital where the nurses gave me a drip in my arm. It was very bad to be at the hospital. I am better now, apart from the chest pains.
My heart is very sore about being out of school now, because I am very interested in learning. 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 in the same way the nurses help me.
November Nomfumaneko's aunt, Ntobile Nkosi, says: "The cause of death for Nomfumaneko was diarrhoea. It was severe and did not stop. At the end she also developed chest pains and could not breathe. That was how her life ended. She went to the hospital, where she passed away."
September 2004 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 [the test that measures the immune system's strength; the normal count is 500-1,500] and that's what shocked me.
I hope that when I start my treatment I will become better; my counsellors told me it helps people to get better, but it does not cure HIV. I will have to take the pills for life. I have two children, Lindithemba, who is seven, and Pumlane, who is five. I am too sick to look after them. My mother has to care for them. I had a boyfriend, but we are separated. I have told him he must go for the HIV test and he does not want to.
People in the village know I am HIV positive. I am not afraid to talk in public about it - at church, I disclosed that I am living with HIV and I had no problems with the community.
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.
I hope that one day I will get married and live with my husband and kids.
September 23 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 bright now.
September 25 I am feeling better. I was very weak in my joints, but now they are becoming stronger. When I came back from the clinic I was very tired and I just slept here in my bed. The next day I had a strong pain in my stomach, but now it is better. I also have pain when I swallow. Even if I am taking water, it is painful.
October 1 Today there is a group from TAC [Treatment Action Campaign] who have come to our village to sing and talk about treatment. I am very happy to see other people who are living with HIV. They are healthy and I hope that I am going to be like them. I also wish I can stay healthy to help my children get educated.
November 2004 When I began taking the ARV pills I felt different. At first I felt better. But in the last weeks I have become sick again with diarrhoea and backaches. I have also lost weight. 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. The people at the clinic warned me that because my CD4 count was low and I have been very sick, it will not be easy.
The big problem I have in my life is with a sangoma [traditional healer]. When I was very sick I asked my parents to bring the sangoma. He gave me some herbal medicines and then told me the cost was 2,000 rand (£173). The cost was much more than I expected and I didn't even use those medicines. The only money I receive is my disability grant of 670 rand (£58) every month, so now, because I have to pay him, I am unable to buy food.
I went to a meeting at the MSF office to talk to some sangomas there because I had such a bad story. They agreed he was cruel and that I should not have to pay.
November 30 Today I am very happy. I went to the clinic to get my new medication, but also wanted to get my boys tested. I was concerned because I breastfed them. The test showed they do not have HIV. When the counsellor showed me the result, I saw a bright future for my children.
December 2 Today I am feeling bad. I have no energy and my stomach is painful. I also have backache again, but at least my chest is better. I do not feel like I am going to die because I trust these ARVs.
November 2005 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.
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.
With the TB I am developing lumps all over the body, and the doctor told me that the tablets for it are not working. I have to be sent to a special hospital for months - it could be for up to eight. I must go because I want to be cured. But it is really painful to think of leaving my children for that time.
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.