Aids: The Lazarus effect

More than five million people are infected with HIV/Aids in South Africa. But while politicians argue and the death toll rises, one extraordinary project is bringing hope to the hopeless. John Carlin reports
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An Aids hospice is a place where people go to waste away and die. In South Africa, where a world record 5.2 million people are infected with HIV/Aids and 600 die from the disease every day, hospices are a growth industry. But the hospice I am at in Khayelitsha, a vast and dirt-poor township in the Western Cape, is a place of quiet hope, where people who had resigned themselves to painful death are being offered the chance of resurrection.

Inside the hospice an inaugural support group session is under way with a group of eight patients who have been selected to take part in antiretroviral therapy. In Africa this is a luxury. A miracle cure. Much as an organ transplant might be to a heart patient in Texas. Yet in Texas - as everywhere else in the rich world - ARV treatment is routine for HIV positive people. A disease that continues to be fatal in Africa has been rendered merely chronic -- and largely symptom-free - in Europe and the US.

We are in a large room, bare save for a circle of chairs where the support group participants are sitting quietly, the silence broken only by a television in the corner showing a local soap opera to which no one pays any attention. This is an important meeting. The support group f will continue to gather, on a weekly basis, for at least the first year of the treatment, maybe for the rest of these people's lives. If the treatment is to be successful, support and solidarity are almost as important as the medication. Success, though, seems a long way off for this particular bunch. Hopefully we will see some progress later, when the treatment has begun to take effect, but for now they are weak and emaciated, and their minds are not all there.

The person who gets the meeting going, who injects the energy and the order, is a professional carer at the hospice by the name of Neliswa Nkwali. The meeting begins with a request from Neliswa, a strong and commanding woman, that each person in the circle identifies their name and their condition.

There are seven women and one excruciatingly thin man, the skin of his face stretched tight over the cheek bones and jaw. Each person speaks in Xhosa, one of the eleven official African languages of South Africa. Occasionally I ask Neliswa to translate a fragment for me but in each little speech there are three words whose meaning and significance I cannot fail to understand. One of the words is "diagnosed", the other two are the name of a month and a year. "April 2002", "December 2001", "June 2003", "October 2000" - words chiselled into their minds as indelibly as if they had seen them written on their gravestones.

One very young woman with thinning hair says she was raped. That was how she got HIV. An older woman wrapped in a blanket, freezing though it's summer, begins to tell her story, then breaks down, convulsively sobbing. Neliswa explains to me that she is - employing a phrase you hear all the time when the subject of Aids arises in South Africa - "in denial". "She cannot accept in her heart that she is HIV positive, but she knows in her mind that she has been diagnosed." Next to the sobbing woman sits a woman called Pretty Fisher. Pretty puts an arm around the sobbing woman. She is a strong one, Pretty. She is the one patient in the group that has already begun her ARV treatment. She is here as much to help the others as to help herself. But she limps badly when she walks and her legs are a mess. She has a condition called Kaposi's Sarcoma. Bravely, in a measure of how reconciled she has become to her condition, she rolls up her trouser legs and shows me what Kaposi's Sarcoma is. Swollen to twice their normal size, her legs from her ankles to her knees looks as raw and blistered as if that very morning she had suffered third degree burns. She assures her support group partners that she had been a lot worse a year ago.

So had Neliswa. She is the Hollywood nurse or headmistress who is hard as nails, whose word is final, whose authority is unquestioned but who you know has a heart of gold. Physically she is also strong. Big shoulders, strong arms, sturdy legs. "I will not take any nonsense once you start your treatment," she says. "You have to stick to the rules completely and absolutely. You must take your pills in the right order at exactly the same time, every single day, without exception. Otherwise instead of making you much better they might make you much worse." Then with forced menace, with a scowl that hides the beginning of a smile, she adds, "I will be strong and firm with you because I want you to be like me."

Half the patients in the circle had looked until that moment as if their minds were elsewhere. They probably had been. But at these words their eyes widened, their ears almost visibly pricked. "I myself was diagnosed in 2000 and have been on antiretroviral treatment since 2003," Neliswa says. "I was much worse than any of you here. And thinner too. I had no energy to talk or even to stand up. My CD4 count was 3 before I began on ARVs. Today it is 889."

All the energy concentrated in that circle of terribly sick people gushes out in one collective gasp. Their minds and bodies may be half gone but if there is one thing they know that people far healthier and better educated than them do not it is the significance of the CD4 count.

Dr Gilles van Cutsem explains it to me later at one of the three small clinics in Khayelitsha where the ARV treatment is dispensed. It is the standard measure, he says, of how far advanced the HIV disease is. "It is the count of the white blood cells, the core of the body's immune system, the cells targeted by HIV. A normal healthy adult is above 500. Below 200 you're vulnerable to everything that's out there. Below 50 you have a life expectancy of six months, if you don't take ARVs."

Below 200 is in fact the point at which HIV is deemed to have evolved into Aids. That is also the key medical criterion employed by Dr Van Cutsem's clinic to determine whether a person is eligible to begin ARV treatment. Above 200 and you are not.

Van Cutsem, who is 31 and born in Belgium, works for Médecins Sans Frontières (MSF). He has been heading up the bustling HIV/Aids clinic at Khayelitsha's unromantically named "Site B", the dusty little shopping centre that is the township's Piccadilly Circus, since September 2003. MSF set up their operation here in 1999 and began administering ARV treatment, the first enterprise of its kind not only in South Africa but on the African continent as a whole, in May 2001. f

They chose Khayelitsha, on the back of their 1999 Nobel peace prize, for three reasons. Because the need, with 50,000 people (or 27 per cent of the population aged 15 to 50) HIV positive, was great; because South Africa's Western Cape province was the birthplace of the Treatment Action Campaign (TAC), an extraordinarily committed movement formed largely by people living with HIV whose purpose is to raise popular understanding of HIV/Aids, challenge the pharmaceutical industry and shake the African National Congress government out of its lethargy towards a pandemic that had become, and remains, South Africans' chief cause of death; and because the provincial government at the time was well disposed towards a pioneering clinical project seeking to make ARV treatment available to the poor.

None the less, in the absence of a national policy and government procurement of ARVs in the early years, MSF were obliged to pay private sector prices for the ARV medication. As Marta Darder, campaigns co-ordinator for MSF in South Africa since January 2002, said, "We started by buying the pills at the local pharmacy. Initially we paid about $2,000 (about £1,150) per patient, per year." In January 2002, the importation of generic versions of the ARVs from Brazil allowed for a price decrease of 80 per cent. In 2005, other generic sources have become available mostly from India and from South Africa. Generic competition plus a government procurement plan have sent the price of the drugs tumbling down to what for South Africa, the economic powerhouse of the continent, is a manageable $168 per patient per year. MSF has offered the treatment, from the beginning, free of charge.

"There had been those in the scientific community and some politicians who argued that even if the price did go way down the treatment was simply not workable in Africa," said Darder, who is Spanish and herself a pharmacist by training. "Our experience here proved them quite wrong." A scientific study into the antiretroviral programme published in 2004 in the journal Aids concluded that the benefits of the treatment on individuals in Khayelitsha was "incontrovertible". The study found that out of an initial sample of 287 patients, half of whom had CD4 counts below 54 prior to starting ARV treatment, 90 per cent remained alive after 12 months on ARV therapy. "The early results of this programme," said the study, one of several that have reached similar conclusions and made Khayelitsha famous in the medical world, "are comparable with data from observational settings in both developed and developing countries."

The number of patients on ARV therapy in the programme today has risen nearly tenfold, with the total expected to rise to close to 3,000 by the end of 2005, but the results remain encouragingly similar. The survival rate for people who would otherwise, for the most part, be dead remains high.

"So," says Van Cutsem, with a smile of vast satisfaction, "this argument that there is an African problem - that Africans have no discipline, no organisation, no sense of time - has been completely wiped off the board." Van Cutsem has a hard job in a hard place. Khayelitsha, for a person just arrived from Europe, is a harrowing place. Near Cape Town airport, it is a vast sandy sprawl of fragile tin shacks leaning one against the other, offering scant protection against the rain that lashes in from the windy southern Atlantic. Many small concrete houses have been built since the ANC came to power in 1994, and the roads are more paved, electricity and running water more available, than in the days when the apartheid government left the black majority of the population to the mercy of fate and the elements. But the prevailing impression, defined by the rows and rows of rusty tin shacks, is one of shocking squalor. All the more shocking if you happen to have made the half-hour drive from Cape Town itself, from the stunning sea views of Clifton Beach and Camps Bay, where the real estate is on a par with Malibu or Saint Tropez.

Little wonder that South Africa has the world's highest figures not just for HIV/Aids but for crime. Murder and theft are as rife in Khayelitsha, whose population is half a million and rising, as anywhere else in the country. Yet Van Cutsem, and other European staff who could quite cheerfully be leading safe and rewarding lives in Brussels or Barcelona, drive in and out of Khayelitsha - work there from morning till night - every day. And what Van Cutsem does from morning till night is see one HIV positive patient after another. Only people with HIV, in and out of his cramped consulting room all day, with conveyor-belt regularity.

"I love my work," he smiles. "I really do. You see, with the ARV treatment what happens is that during the first three months you see little change. But then within six months you find that people have recovered incredibly impressively. One year later I see them and, though it happens every day, I still cannot believe it. It is fantastic!" Van Cutsem said he enjoyed a level of almost instant gratification in his job that he could not possibly expect to find back home. "It doesn't happen very much in medicine to be involved so closely, so intimately, with treatment so miraculous. One day your patients are close to death, the next - it almost seems - they are resuming normal working lives. It is a source of everyday joy."

Deepening his joy still further was the observation, made also by Marta Darder and other MSF staff, that those patients who come back from the dead appear to change their entire attitude to life, become more responsible, balanced, kinder, self-reliant. Cindy Nosindiso has no doubt at all that there was "one Cindy before I was diagnosed in 2002, and another Cindy today". Like many who are on ARVs she has become a propagandist for the cause, extolling everyone she knows who is HIV positive to apply for treatment, and educating those who do not have the disease on the ways to avoid infection. "I am so glad of the chance to have this second life," she tells me, bubbling over with enthusiasm. "And not just because I am not dead but because I know what I want now more clearly. I know the difference better between right and wrong. I can stand up better on my own two feet. Before I lived from day to day. Now I have goals. I am organised. I realise now I must not waste time, that life is precious and that I must use my time in this world well."

SHE IS doing just that. An energetic campaigner for the TAC, she has a job now at a day-care centre, right next to the hospice where Neliswa works, looking after children up to six years old who are HIV positive. The job has had its moments of intense sadness, as some of the children have died. Now there are 70 at the day care centre, 12 of them orphans, and they look a picture of health. When I arrived mid-morning I came to see Cindy and did not know that all the children in her care were HIV positive. I would never have guessed. Just as I would never have imagined that they would all be on ARVs. f No sooner did I appear at the door than I was accosted by a noisy crush of little boys and girls, all dressed just as children in a similar place would be in Europe, all of them as fat and seemingly healthy and cheerful - maybe more cheerful - as any children their age anywhere. One especially chunky, exceptionally bright-eyed little boy caught my attention - and my hand. He led me into a small, low building with yellow walls covered in Winnie the Pooh posters, photo after photo of the children at play, and the autograph of one of the centre's benefactors, the pop star Elton John. In the centre's small, neat office, Cindy, having trouble keeping the children away, told me her story.

"Soon after I was diagnosed I had, first, meningitis, then TB. I started losing weight - a lot of weight - and having terrible headaches. I was in and out of hospital. I could see myself underground. Then one day a friend, a TAC activist, told me she would take me to the MSF clinic. My CD4 count was below 200 so they said I could start counselling to see if I was prepared to do the treatment seriously. This was at the end of 2002. A counsellor came to my home to see if I had the support system in place to help me take my pills when and as I should. A counsellor came again to ask me more questions and to tell me - and this is a very important thing, I now understand - to disclose my illness to the rest of my family, and to my last boyfriend . But all the time I was getting worse. I could not eat. I was dizzy, seeing double. I could not walk. I was in a wheelchair. I was so thin I was disappearing. My CD4 count was 28. 'Now I really am going underground,' I thought."

She began on the ARVs in April 2003. She was warned there might be side-effects - fevers, nightmares. But these were trifles compared to what she was already experiencing, and the certain fate that lay ahead. Yet during the first days she began to wonder whether she had made a mistake, whether the doubters in the ANC government who said the medication was toxic had been right after all. "I felt so bad I was convinced that I would be dead by the end of the week." She was quite wrong. Within the week she was feeling appreciably better. "I started to eat, to get up, to go the toilet by myself. Leaning on the wall, I could walk. I got better and better as the weeks progressed. I got out of the house. The people looked at me as if they were seeing a ghost."

She stuck rigorously by her pill regimen. She went initially to the clinic for check-ups once a week, and after three months she stood up one day, drank in the cold winter air, and cried, "It's me! It's me again!" Shaking her fists as she speaks to me, with a huge smile on her face, she repeats, in exultant recollection of the moment, "'It's me!' I cried, 'I'm back! I can stand on my own again!'"

Less stern than Neliswa, Cindy today has the same imposing physical bulk as her friend, the same drive and generous energy. You look at women like these, and you see them all over Africa, and you have a glimpse of how it is that despite living in what we in the West would consider such dismal, such impossible poverty, people on the continent do not just survive, they live with smiles on their faces. The sort of smiles that lit up the day-care centre where Cindy and I talked.

Walking out of the small office, past a corridor lined with rows of coloured rucksacks with Mickey Mouse and Nemo logos on them, I see a reminder on the wall that amidst so much hope here there is always an undercurrent of tragedy. Framed in metal strips on a wooden board are the names of the 14 children who have died since the Irish sisters of the Nazareth House opened the centre in 2001. Nomandle Mtchetwane, the woman in charge, says that each death is like a death in the family. "We have psychologists who come here and talk to the staff to help us deal with the loss of these children, with the possibility that at any moment one could go. I have two healthy children of my own but the difference here is that you know all the time that they are so young yet so near the grave."

She remembers with particular sadness the first little boy at the centre to die. His name was Samkelo. "He was four when he arrived. He could not walk. He never walked. He was paralysed from the waist down because of the HIV he was born with, the doctors said. But although he was useless from the waist down he talked so much, he expressed himself so well. He was such a very happy child." And yet he always had rashes on his body. "Sometimes they were terribly sore. He would cry almost always when we washed him. Yet he remained always so happy." Nomandla pointed to a small, passport-size photograph on the wall of a chubby boy with a smile as wide as his face. It was taken after Samkelo began his ARV treatment with MSF in September 2001. Soon he became bigger, and his rashes got better, but he suffered from constant diarrhoea and vomiting. He could keep neither his food nor his medication down. "In June 2002 I took him to the hospital. We took turns to sleep with him at night for several weeks. His mother was still alive, but very ill with meningitis. During the last week I knew he was dying. I was so, so sad. Everybody was crying. We all had a special relationship with him. We all felt like his mother." f

THE LAST death at the day-care centre was in December 2004, but the cause was not HIV. The child, it was discovered too late, had been born with a hole in his heart. But there has been more reason to be cheerful than to despair here. The availability of ARVs has changed everything. Take the case of a child at the clinic, says Nomandla, called Oviwe. "It is a story that is sad but also happy. Oviwe was two years old and so, so sick. He was as bad as Samkelo was, in a ward at the hospital where 12 children with advanced Aids had been put, waiting to die. And the other 11 children did all die. Only Oviwe, the only one on ARVs, survived. Two years have passed. You should see him now."

I did. He was the chunky, bright-eyed boy who had grabbed my hand when I arrived and led me into the little building where he spent his days. Cindy brought him into the office for me. He grinned on seeing me, reached again for my hand, and would not let it go. Yet Nomandla and the rest of the staff at the centre were right to fear for these children, to see their lives as more precarious than those of adults like Neliswa and Cindy. There is a specific problem regarding the administering of ARV treatment to small children and it has to do essentially with the fact that HIV infection is very rare among them in the rich countries of the world. "The formulation of the drugs is the thing: they have not been developed with children in mind," explained Marta Darder. "There are no lower dosages available that are adjusted to the weight and age of the children. And this is because there is no market for paediatric Aids in Europe and North America." The pity of it is that it would not require any great investment to find a solution to this problem. It is not new drugs that are required, simply more - and not particularly complicated - research. Because the science is not exact, those who administer the ARV treatment to the children are obliged to do a measure of improvising, engaging in a degree of guesswork as to the dosages required, breaking up the pills adults use into small sizes and trusting - so far with very good results in Khayelitsha, because of the unusually high quality of medical attention - that they will take effect.

Gilles van Cutsem acknowledges that even with adults, exuberant as he is at the success rate so far, there are grey areas. "There is much to celebrate," he says, "but also there is no reason for complacency. This is not a magic cure." No, it is a method of containment that so far has worked spectacularly well. The problem is one of resistance; at what point do the drugs stop serving their purpose? When does the HIV disease get the better of those white blood cells once again? In the West long-time HIV positive patients are already on what in the medical world they call a sixth, or seventh "line" of medication, the previous five or six combinations of drugs having outlived their usefulness. In the Khayelitsha programme they are predominantly at the "first line" stage, with only a few cases referred to second line treatment. The problem with second line ARVs is that they are far more expensive. The reason they are far more expensive is that they are at the stage the first line drugs were at five years ago. They are not available in generic form yet; only from the big Western pharmaceutical companies.

"So the big fear obviously is what will we do in five or 10 years' time, when the first line of treatment meets with widespread resistance?" asks Van Cutsem. "The answer is to push for lower prices now. To go to battle now. But I believe this is a battle that we will also win. We will have the second line available and the prices will get lower."

They will, most certainly, if Nurse Nkwali has anything to do with it. Get the formidable Neliswa to join the battle and "Big Pharma" will be helpless before her. I go and see her and Pretty Fisher one last time before I leave South Africa, a couple of days after that first focus group session. Having thought my capacity for surprise and wonder had been exhausted, I was struck dumb again.

For two reasons. First, because just before going to see them I spoke to the co-ordinator of MSF's 10-strong team of counsellors, Laetitia Mdani. The rigour she brings to bear to the selection procedure - the persistent checking of people's likely reliability in complying with the treatment and the education tirelessly imparted to make sure patients see that to miss one morning's dose is to play with fire - was impressive. But so was the delight she felt on seeing the fruits of her disciplined labour. Almost echoing Van Cutsem's words, she said, "I see most of our patients 12 months on and it is so encouraging. It makes me so happy to come to work because every day I will see someone who the first time I saw them was in terrible shape and now is maybe holding down a job." And then, without knowing that I had met her, Laetitia said that the one patient that always came to mind, the great miracle in which she took the greatest pleasure, was Pretty Fisher.

"Pretty had given up," Laetitia recalled. "She was just waiting to die. She was in hospital, bedridden, with no purpose, very down mentally. She was out, out, out. Gone! Now you meet her, then you meet her again two weeks later, and she remembers everything you talked about the first time. Pretty is a new person. Amazing! Really amazing! I think of her as THE example of how the ARV treatment can change people's lives."

And change her legs too. Pretty's are a distressing sight, but they used to be far worse. Vivaciously, her eyes bright (for she does live up to the name her parents gave her), she recounts how her legs were swollen to more than twice the size they are now. "I had a constant burning pain before I started the treatment. I had TB. I was always short of breath. I was in bed or, at best, in a wheelchair. Now I am standing. I am not in pain. I am sharp in the head, and I know I will continue to get better and better."

As for Neliswa, my big surprise was that she was seven months pregnant. I thought I had seen a bulge there the first time, but I could not imagine it was what it seemed to be. I could only deduce that, in an excess of ARV-induced euphoria, she had been over-eating outrageously. But no. She was indeed expecting a baby. Did this mean, then, that she was not as fiercely disciplined with herself as she enjoined others to be?

"No, no," she smiled, revealing a big gap - an endearing gap that she feels no need to hide - where her two front teeth ought to have been. "I am not pregnant by accident. I have a 12-year-old child with my husband and she is not HIV positive. I always said, from long ago, that I wanted two children. My husband agrees with me. He is HIV positive too, and like me he is on the ARV treatment and he is very well, healthy and working full-time. [He was bad too - he had a CD4 count of 17 and his doctor told him all he could do was go home and die.] Prior to conception we went the two of us to talk to the doctors about having a child. They said we had to wait until we were both above a CD4 count of 400. It was a very happy day when we both reached that point. Eight months later I got pregnant. Because of the ARVs I do not believe that my child will be HIV positive. The doctor has told me to expect a normal pregnancy and a normal child."

It's a miracle, I say. She was as near to being dead as you can be without being, as her friend Cindy would say, "under ground", and now there she was, about to consummate the miracle of birth. "It is true," Neliswa says, abandoning all that schoolteacherish restraint of hers, joyously flashing her big tooth-free grin. "I am leading a completely normal life. I am an example to people. Everywhere I go people shake their heads and say my story is too good to be true. But it is true! Here I am. Back from the dead, and about to have a fat, healthy baby."

Photographs by Pep Bonet and text by John Carlin, extracted from 'Positihiv' (Rozenberg Publishers), a project by Médecins Sans Frontières. For more information visit