Cape Town - A 43-year-old, HIV- positive woman who lives in a rural area of KwaZulu-Natal is one of the most important people on the planet, possessing an artillery of powerful, broadly neutralising antibodies that, if harnessed and understood, have the potential to eliminate 88 percent of global HIV strains.
The mother of four has a long-term partner and to all intents and purposes is well. She is on antiretrovirals, has an undetectable viral load, and a high CD4 immune cell count.
As the scientific community has established, her immune system is able to mount a potent response to the HIV that infects her body.
We should know her, thank her, laud her for what she is doing for humanity, even give her a Nobel Prize.
But the chances are that we will never know her name, get to speak to her, meet her family or describe the area in which she lives. We will never know whether she has a job – or the name of her partner. We may not share her hopes or her dreams, or ask her how she feels about being such a critical part of modern science.
In the realm of scientific research, anonymity is a given. What matters most, even more than the science itself, says Professor Salim Abdool Karim, the lead investigator from the Centre for Aids Research in SA (Caprisa), is that strict confidentiality laws governing research procedures are never broken. “I don’t even know her name, and certainly wouldn’t recognise her. To protect her privacy, she is simply a coded number – that’s how she enters the investigative programme.”
What has to be recognised, he believes, is the enormity of the “gift” she and other volunteers like her are bestowing on science.
In current terms, that “gift” has led to the ground-breaking discovery that a sustained attack from the immune system forces the highly adaptable HI virus to develop a sugar coating on its surface. This creates a point of vulnerability, which can be attacked by the broadly neutralising antibodies that she has. It is believed that only a small fraction of HIV-infected people develop these broadly neutralising antibodies which can recognise – and attack – many more strains of HIV.
Scientists say that the uncovering of a weakness in HIV, discovered by a South African team of scientists, is a major key in the research and development of an HIV vaccine. The findings were published in the prestigious journal, Nature Medicine, on Monday They are the result of a collaborative study involving 20 authors, 16 of whom are South African.
The volunteer, whose blood samples were isolated during the data-rich Caprisa 002 and Caprisa 004 trials, which have been carried out in KZN over the past few years, will never be cured, explains Abdool Karim. “And she will have been told that. Yet she has given up her time to participate in the research programmes.
“One has to remember that in many cases, volunteers have to travel long distances to get to the research centres. We could not do this kind of research without their long-term commitment.”
Answers, he points out, don’t emerge in the course of doing a study over six months. These were studies that were started back in 2003.
Penny Moore, lead author of a paper describing the discovery, also praised the role of the female volunteers.
“It’s that support and incredible commitment from these women who came back again and again and again that allowed us to ask so many important questions,” she said.
A second woman, whose blood was key to the research, came from the rural village of Vulindlela, where the microbicide gel trial was carried out. “She did not fare as well,” said Abdool Karim. She began taking antiretroviral therapy about two years ago, but was admitted to the specialist TB hospital, King George V, in Durban after contracting multidrug-resistant TB. She died of extensively drug-resistant TB.
“It’s sad that she is no longer with us but her specimens, her virus, continue to enable us to study how she developed this response. She has left, in many ways, a lasting legacy that goes beyond her own life,” he said. The benefit will be for others who have not yet acquired the virus.
These brave women – “You could call them the unknown soldiers”. - Sunday Argus