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DART trial participants tell their stories

21 July 2009

The Development of Anti-retroviral therapy in Africa (DART) trial aimed to find out whether the lab-based strategies used to deliver ART to people with HIV infection in resource rich countries were essential in Africa, where around 4 million people still need ART urgently and resources are limited.

The results suggest that many more people with HIV in Africa could be treated for the same amount of money as is currently spent if lab tests are not routinely used to monitor the effects of ART.

Here some of the 3,316 people who took part in the trial share their experiences.

 

 

‘‘I jointed the DART clinical trial in 2003. Dart is the largest HIV/AIDs treatment trial ever carried out in Africa. It's an experiment, designed to find safe, cheap and simple ways of using life saving medicines.
Dart has given new life to people like me. And I hope the knowledge it gives to doctors will help many more. Because knowledge is our best weapon in the battle against AIDS, a battle which we are still a long way from winning.
I first made the journey to my husband's village seventeen years ago. It's not a happy memory. My husband had just died. He was 34 years old. We lived in Kampala, but his family wanted to bury him in the village where he had grown up, in the hills above Nebe in North Western Uganda.
I did not know then that AIDs had killed him. His death certificate said Pneumonia and meningitis. The doctor only told me the truth when I got back to Kampala. He urged me to get tested for HIV - the virus that causes aids. But I refused. I did not feel ill. And what was the point. Back in 1991 no treatment existed. I remember being afraid. I had three children - the youngest just a baby. I could not believe what was happening.
Many here in the village did not believe it either. Rumours spread that I had used witchcraft to kill my husband. For many years I did not visit. Four of my brothers and sisters, half our family, had already died of aids. When I tested positive for HIV, my family thought I would be the next. When I think of everyone this epidemic has taken - I often wonder why I had the chance to survive.
AIDS has caused so much devastation. My husband's parents should be resting in their old age. But there are so many orphans; so many mouths to feed.
One of the aims of the DART trial is to make it easier to bring the treatment which saved my life to villages like this. If this happens - then I will be very happy at the small part which I have played.’’

 

 

Vincent knew that his death would spell disaster for his family. His wife had already died so he was a single father of six children. Then his brother died, leaving six more children to support in the village. When he was told he was HIV positive he gave up hope. He believes that joining DART saved his life, he says he understood that he was joining a clinical trial rather than a treatment programme. Speaking about the trial Vincent said:

‘‘Up to now I still think, If I had died, where would these people go? My mother would not manage. I have six children. My mother would have even died long ago because of thoughts, not sickness, but worries.
If I had not taken the trial, I don't think I would be speaking to you right now. I would have died long ago. I entered freely. They gave me a lot of papers to read so I understood what was happening, how many times they would take blood, how many visits I would make in a month. Such things were detailed. I read all. I took the one written in English. I am keeping them up until now.’’

 

 

The words of a young Ugandan woman called Christine capture the experience of many of the trial participants. Christine isn’t one of the 3,316 DART participants but her story highlights the plight of those who live in remote regions. To receive anti-retroviral therapy she walks sixty kilometres in two days to attend a clinic. A week prior to speaking she had given birth to her sixth child. The baby's name is Odongo, which means child born after the death of his father. Christine's husband died of AIDs, she said:

‘‘It takes me two days to get here and two days to get back. I ask for shelter to sleep on the way - but there is often no food for me. It is very difficult, but I do this because I want to get treatment and be healthy so that I can look after my children. My eldest boy who is 12 is looking after the others while I am away. I worry whether he will prepare them food.’’

 

Many people in Christine’s village need ART, she described the reality:

‘‘I try to persuade them to come for treatment. But they find it very difficult to travel this far. Some have died because of this. My sister in law died recently. She knew she was HIV positive. But she was very weak. She could not get to the clinic to do tests and get treatment. Eventually we took her to hospital. But by then she was in an advanced stage and she died.’’

 

Peter said:

‘‘A number of friends were discouraging me to join the study. They say that they are going to do a research on your life, trying the medication on your life. You don't know the counter reaction of these drugs. You might die. This drug might kill you. But I said. They have been planning to take me to the village to die there. Better access medication and try the luck which is there than go in the village and die in the village like a person who has never gone to school. So I accepted to do the research on my life.’’

 

Edward is a teacher who runs his own school. He was the first person in his village to get anti-retroviral therapy. His recovery had a dramatic impact on everyone, parents who had taken their children out of his school brought them back. Edward said:

‘‘My appearance was shocking. I was not someone who you deserved to look at. Even other schools started to campaign against me, they said - you are taking your children to that gentleman? He is going to die so soon. Now where will you take your children after that man dies? So the parents had to take action and take their children. They changed their attitude wondering, how have I recovered? They couldn't believe it. There is nothing I did. It is only my appearance that persuaded them to bring back their children.’’

 

Other people in the village joined the DART trial and now there is now a strong HIV positive group in the village which Edward co-ordinates that is mostly made up of DART patients. They run prevention campaigns to persuade people to get tested and providing counselling. Speaking about the group Edward said:

‘‘I am happy to do this work. Today things are different from when DART started. Now people know when they test positive that treatment is available. There is no reason for them to go through all the suffering that we went through. I don't want people in the community to get sick like I did.’’

 

Anne has narrated a documentary about the DART trial produced by an independent film-maker; it features the experiences of these people and other trial participants. If you’d like to know more please contact the MRC press office.

 

Press contact: 020 7637 6011
press.office@headoffice.mrc.ac.uk

 

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