UNIVERSITY OF PENNSYLVANIA - AFRICAN STUDIES CENTER
Sunday Times October 3, 1993, Sunday
SECTION: Features LENGTH: 3727 words HEADLINE: The plague that never was BYLINE: Neville Hodgkinson
BODY: Philippe and Evelyne Krynen had come to Africa with a quest: their mission was to help children in the direst need. After being told they could have no children of their own, the French charity workers had determined they would dedicate the rest of their lives to Third World orphans.
In January 1989 they found the ideal opportunity. A three-day journey through Tanzania by bus, train and boat took the couple to the remote Kagera province, a pocket of land west of Lake Victoria and bordering Uganda, Rwanda and Burundi, where Africa's first cases of Aids had been diagnosed as far back as 1983.
Now the region was an epicentre of the disease, according to a local Lutheran bishop who took them on a tour of the worst-hit places. Whole villages were being destroyed, people were dying continuously in and around the main township of Bukoba, and HIV testing suggested that up to half the sexually active population was infected.
Philippe, 50, a former pilot, and Evelyne, 42, a teacher, prepared an illustrated report on their findings, Voyage des Krynen en Tanzanie, which they sent back to France. It was to prove a catalyst for world interest in the social impact of the pandemic of Aids in the continent.
Their journal presented a dramatic picture: children alone in houses emptied of adults, or abandoned into the care of grandparents; a football team destroyed by the disease; old people sitting alone with their dead; black crosses painted at the entrances of Aids -stricken homes.
''Here, Aids does not choose its victims among marginal groups,'' they wrote. ''It touches the entire sexually active population, men and women alike. Extreme sexual liberty, a weak sense of hygiene and a lack of medical and social support have made the populations of these parts a particularly homogeneous risk group.''
It was a message that Western medical and charitable agencies, urgently wanting to alert people to the perceived dangers of HIV and Aids, were more than ready to hear. French and Belgian newspapers, magazines and television stations took up the story and aspects of it are still being quoted around the world by Aids organisations.
In common with many other Westerners who had seen the Aids epidemic as a call to arms against the perils of ignorance and promiscuity, the couple had felt it was almost impossible to overstate the dangers it posed.
They helped one young villager write a letter to schoolchildren. It said so many of his team-mates had died that ''we can't play football any more so behave, and you won't get the disease like we did here''. The letter featured in pamphlets prepared by a European Community Aids prevention project and was distributed widely to schools in west Africa.
''When we came here we had the textbook knowledge of Aids in our minds,'' Philippe says. ''That it is a sexually transmitted disease; that it would be very easily transmitted in Africa because other STDs are rampant; that many Africans are HIV-positive and would get full- blown Aids after one or two years, faster than in Europe; and that the virus was passed from mother to child, affecting 50% of children.
''This was what we had learned from our medical studies. And the people who showed me what was happening here reinforced this belief. What I wrote in my journal was with 100% bonne conscience.''
Four years later the couple recognise their understanding of the situation was utterly wrong.
IN THE late 1980s, medical workers almost without exception believed the disease first seen destroying the immune systems and lives of homosexual men in San Francisco and New York was a new or mutant virus, HIV, which posed a threat to the sexually-active population of the entire world.
A diagnostic test had been developed which purported to be able to identify antibodies to HIV in the blood of infected people. Most Aids patients seemed to have these antibodies in their blood, and on the basis of that link various forms of the test were rushed on to the market.
They rapidly became big business. Doctors believed the test could identify infected people and thus help predict people at risk of developing Aids.
It was also widely believed that because of its similarity with certain viruses found in African monkeys, HIV had come from Africa. The viruses were harmless to monkeys except in abnormal laboratory circumstances; but if HIV had recently crossed the species barrier into humans, that might be why it could be so devastating in its new hosts.
When Western scientists began to look for Aids in Africa, their tests showed that millions already seemed to be infected with HIV, confirming the theory that this was where the virus had originated.
Furthermore, strange deaths had been reported which carried the hallmarks of Aids. In particular, an unexpected collapse of immune system defences in young adults had allowed fungal and other infections to run wild. A few such deaths had been seen in two of Kagera's villages, Kashenye and Bukwali, in the early 1980s.
The number of cases was tiny relative to the apparent spread of HIV, but because the virus was thought to take anything from two to 10 years to cause the immune system to fail, Aids doctors came to believe the continent was already in the grip of a terrible disaster.
That was the climate of medical and scientific opinion in which the Krynens arrived in Kagera four and a half years ago.
Backed by Partage, a charity which arranges sponsorship among French families and institutions to help Third World children, they soon found themselves heading the first and largest Aids organisation for children in Tanzania.
In preparation for their new life helping people in developing countries, the couple had abandoned their previous careers to train as nurses specialising in tropical medicine.
Today, Partage Tanzanie has 230 full-time employees who are helping 7,000 children in 15 of Kagera's villages. The charity has an income of more than Pounds 50,000 a year, a fortune in a country desperate for foreign currency. The staff includes 20 nurses, a doctor, a pharmacist, a laboratory technician, office staff and teachers. There are also scores of field workers who get to know the children, caring for them at day centres, monitoring their health and ensuring they are well fed.
The couple's first intimation that there might be something wrong with the standard medical model of HIV and Aids came when they started to try to organise help for children in the border villages. ''Our aim was to help the people help their children,'' says Evelyne. ''But in some of the villages we found nobody was interested in the future, or in the kids, any more.
''One reason, we thought, was that they had been told 40-50% were infected and were going to die, and this in a context where people were indeed dying a lot, because of poverty and an upsurge in malaria. The young people were convinced they were going to die anyway, so why should they think of the children or the future.
''We said that even if 50% are infected, 50% are not, so let us find out which are which. Then those who are free of the virus can think about the future again.''
A pilot study offering HIV tests to their own staff provided the next shock: only 5% were positive, although almost all were young and sexually active. Perhaps they were unrepresentative, the Krynens thought, because their level of education was above average.
So last year, they proposed a mass testing programme to the villagers of Bukwali. Encouraged by the promise that a clinic would be established to give free treatment to anyone testing positive, about 850 people agreed to take part almost the entire population aged between 18 and 60. This time, 13.7% were found to be HIV-positive still much lower than the villagers had been led to believe.
The Krynens have found that one positive test cannot be relied upon for a HIV diagnosis, even though in many African countries a single test is all that can be afforded. A wide variety of parasitical and other infections can trigger a false positive result and repeated testing frequently shows the same patient to be negative.
The villagers may have shown a higher rate of HIV-positives simply because they were older, with an average age of about 42, compared with 24 in the staff study. They had been exposed for longer to ''whatever it is in Africa that can so readily cause the blood to test positive'', says Evelyne.
''We have noticed that with the women, the more children they have, the more likely they are to be positive. We have five HIV-positive women on our staff, and all have children but a stable life.
''It could be because being more in contact with doctors and hospitals, and taking more drugs, or even just giving birth, causes you to accumulate reactivity to the test. It may not have anything to do with a virus.''
Even more dramatically, the Krynens' studies have shown no connection between HIV-positivity and risk of illness. Fifty-four villagers were ill with complaints such as pneumonia and fungal infections that might have contributed to an Aids diagnosis, but just as many of these were HIV-negative (29) as positive (25). When they were given appropriate treatment, most recovered.
''All of a sudden you put all you have been told about the disease in the garbage can, and try to reconsider,'' Evelyne says. ''Once you know HIV means nothing any more, once you know it is not true there is an epidemic, you doubt everything you believed before.
''The 15 villages we have looked at are in the most affected area of a region that is supposed to be at the epicentre of Aids in Africa.
''When you listen to the people, you find they had been shocked by some deaths where the effects on the body were very visual, with fungus infections and skin rashes. But these can be secondary effects of antibiotics, and the people who died with these conditions had all been treated before for conditions such as bronchitis. Nothing is sure; everything is just wind.''
Most of the first deaths reported as Aids were in young men trading in black-market goods in the aftermath of the Ugandan war. ''It started at the border, where people were dealing in drugs as well as other goods,'' says Philippe.
''It's true this group had money and was affected with immune suppression and a wasting syndrome. But it was not because they had sex like rabbits that they died. This is what was put in people's minds by missionaries and other people, but whatever killed them was not sexually transmitted, because they have not killed their partners. They have not killed the prostitutes they were using; these girls are still prostitutes in the same place.
''Was it a special booze? Was it an amphetamine or aphrodisiac? It is difficult to give more than hints, but when you listen to the people's descriptions of those first affected, you find they were saying they had been poisoned. If the local people said that, for two or three years before the word Aids came to the region, why don't we believe them a bit, and look at what could have poisoned them?''
Evelyne adds: ''There is not a trace of evidence for it being sexually transmitted. I will spend a night with an HIV-positive person, if he's handsome enough I'll do it to prove it.''
Studies elsewhere in Africa have shown a close correlation between HIV-positivity and risk of illness, but the Krynens think this may be a consequence of health workers and patients giving up hope in the face of an HIV ''death sentence''.
''If you look at the sick people only, and test them, you may find many who are positive,'' Philippe said. ''If you do the contrary, and test the whole population of a village, you seize an instant picture of a real state.
''We have fewer casualties, proportionately, in those who test positive than in those who are negative. That may be because they are able to report to our clinic where they are treated free. They have a little flu, a backache, a boil, and they get a nurse, a smile, and do much better than the poor fellow who tested negative.''
The couple tried from the start to play down the significance of a positive test result. Today they are continuing to use the HIV test, ''just to prove that we have to stop doing this, that it has nothing to do with Aids' '. They are training their field workers not to mention HIV or Aids, but instead to deal with any known disease they encounter with the best treatment available, regardless of the patient's HIV status.
''It is not known whether HIV causes Aids, '' they say in a pamphlet produced for the team. ''It is time to come back to science and abandon magic thinking.''
Philippe now declares: ''There is no Aids. It is something that has been invented. There are no epidemiological grounds for it; it doesn't exist for us.''
IF KAGERA is not, after all, in the grip of an epidemic of ''HIV disease'', and if there is no Aids, where have the thousands of orphans come from?
The answer, say the Krynens, is that most of the children are not orphans at all. Their final disillusionment was to discover that although many children are raised by their grandparents, that is a long- standing cultural feature of the region.
''The parents expatriate themselves a lot. They move away from the region, sending a little money, returning little or never, but still have many children in the village,'' Philippe explains. ''They are outwardly orphans, but raised by the grandmother or grandfather. It has always been like this here; they may need help, but it has nothing to do with Aids.
''Polygamy is also rampant here and they don't raise all the children. They select very few and the others are just made and abandoned.'' Other children were born to prostitutes.
''You come as a European and ask: 'Who has no mother or father?' They produce all these children, even though they have a mother or father in another place.
''We have been shown false orphans since the beginning children who have parents who never died, but who will not show up any more. And when the parent has died, nobody has been asking why. It has nothing to do with an epidemic.
''Families just bring them as orphans, and if you ask how the parents died they will say Aids. It is fashionable nowadays to say that, because it brings money and support.
''If you say your father has died in a car accident it is bad luck, but if he has died from Aids there is an agency to help you. The local people have seen so many agencies coming, called Aids support programmes, that they want to join this group of victims. Everybody claims to be a victim of Aids nowadays. And local people working for Aids agencies have become rich. They have built homes in Dar es Salaam, they have their motorbikes; they have benefited a lot.''
The children usually thrive once they are properly fed and cared for, although some are so poorly from birth, regardless of ''HIV'', that they remain vulnerable to infections.
Philippe says: ''In all the children we have lost there was a very well designated reason, an illness we could not cope with because we hadn't the means to do it: heart failure, TB treated too late, cerebral malaria, acute hepatitis probably caused by a drug taken for the wrong reasons. You have no right to call any of these deaths Aids. I can't tell you of a single child I have followed who has died of a so-called Aids -related illness.''
The Krynens have an adopted Tanzanian son, Joseph, 5, whose one-time diarrhoea, coughing and wasting were said at a local hospital to be untreatable because of HIV. Today he is cheerful, in near-normal health and vigorously active.
''Joseph is what people call an Aids baby, but he is living well,'' says Philippe. ''He is a sample of the manufactured Aids you can have in this region.
''We put him on anti-fungal drugs for his diarrhoea, and sent him to France in January this year for bronchial washing and now look at the kid.
''Whenever I have been able to follow people reported to have Aids for any length of time, I have seen them to be cured. When you really look into it, they are not Aids cases. So where are these cases? Always in the hands of other people hospitals, reporters, photographers.
''A 65-year-old who tested HIV-positive had been getting sick, suffering stomach troubles and losing weight. I explained to him that HIV and Aids were very different things, that we could not really make a link between them. The other day I heard that the fellow is not sick any more. He doesn't believe he is going to get Aids. He has regained four kilos and is doing very well. This type of resuscitation is very common in our programme.
''A woman of about 40, with two daughters, was dying of chronic diarrhoea and chest infections, said to be HIV-related. Her husband was said to have died of Aids, although nobody has been able to tell me precisely what killed him.
''We admitted one of the daughters to our day-care centre, supported the other at school with books and meals, and treated the mother with rifampicin, a drug normally reserved for TB which we have found to be very effective in such cases. After a month she did not have diarrhoea any more, she was able to go to the fields again and has started to gain weight. I can swear to you that this woman will not be sick for a long time, as long as she knows we are supporting her. We have stolen another Aids case from the statistics.
''It is good to know that this epidemic which was going to wipe out Africa is just a big bubble of soap.''
POSTERS warning of the dangers of ukimwi ( Aids) adorn the cabins of the Victoria, a steamer that ferries passengers on the nine-hour journey from Mwanza, on the southern shore of Lake Victoria, to Bukoba.
When the Krynens first made the journey they found a small town with only a handful of foreigners and few cars. Despite the concern of doctors over an apparently high rate of HIV-positivity, Aids had not become a topic of widespread attention.
Today, as the ferry arrives the tiny port seizes up with vehicles, including several white Land-Rovers and Toyotas characteristic of the numerous Aids agencies that have flourished in much of central Africa.
''We have everybody coming here now the World Bank, the churches, the Red Cross, the UN Development Programme, the African Medical Research Foundation about 17 organisations reportedly doing something for Aids in Kagera,'' says Philippe. ''It brings jobs, cars the day there is no more Aids, a lot of development is going to go away.''
The Krynens work hard. They keep files on all their donor families and careful records of how the money is spent. Their home, a modest bungalow on a hillside overlooking Lake Victoria, is the hub of the project, with its own HIV-testing laboratory. All day a stream of workers comes by to give feedback and take directions. A few children who have nowhere else to go live in an adjoining building.
When direct, practical help is given to suffering people, perhaps it doesn't matter too much whether the children are Aids orphans or not. But the Krynensare angry because false information continues to be fed to Africa and the world.
'' Africa is a market for many things, an experimental ground for many organisations and a 'good conscience' ground for many charities,'' Philippe says.
''It is very easy to 'do good' in Africa. It is so disorganised that the one who is doing the good is also the one reporting the good he is doing. So it is a perfect field for charity the fake charity which is 99% of the charity in Africa, charity which benefits the benefactors.''
They speak especially strongly about this because of their own involvement in triggering an invasion of Aids agencies to Kagera. They now know that the stories they told, of houses and villages abandoned because of Aids, were untrue.
''Not one such village can be witnessed by a team of journalists led by me,'' Philippe says. ''The houses that were empty were closed because they were the second or third homes of someone in Dar es Salaam. I learned this later.
''I have never seen a village with no adults, where children are like wolves in the forest. You know who is responsible for these stories? Partly, Partage. We said that if we did not do something very quickly, these villages would be emptied of adults and children would be like wild animals. The stories have been printed and reprinted, without the 'if'.
''My medical studies led me to believe that Aids was devastating and the people who showed me the situation here reinforced this belief. I jumped into this, and made others believe it. And now I know it was not true. But I know many more things that were not true. Nothing was true.
''It is terrible to consider you have done so many things you thought worthwhile, when in fact you were misled. It is difficult to adjust afterwards. Nobody knows who is responsible for the first misinterpretation, but as time passes it gets bigger and bigger.
''These ideas were not based on any studies; they were just fashion. But when you are here, and you have to witness the reality of what happens in the field, you cannot agree with any of the statements they are making in Europe about Aids in Africa. We discovered we were in a full-blown lie about Aids. Everybody participates in this lie, willingly or not. No individual is responsible, but it is a big scandal.
''The world has been brainwashed about Aids. It has become a disease in itself, without the necessity of having sick people any more. You don't need Aids patients to have an Aids epidemic nowadays, because what is wrong doesn't need to be proved. Nobody checks; Aids exists by itself.
''We came here to help orphans of Aids. Now we are facing a situation where there are no orphans and no Aids.
''We are in the heart of Aids country. You are talking to people who 'discovered' Aids here, and who now say it is a lie. We expect to have to pay for what we say. It will be the price of truth.''
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