THAT NEVER WAS
By Neville Hodgkinson, Tanzania
The Sunday Times (London) 3 October 1993
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.
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.
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.
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.
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.
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
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%
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."
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
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.
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.
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.
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.
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.
for their new life helping people in developing countries, the couple
had abandoned their previous careers to train as nurses specialising
in tropical medicine.
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
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.
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.
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.
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",
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.
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,
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.
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.
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,"
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.
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?"
"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."
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".
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.
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."
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."
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
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.
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.
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
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.
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.
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."
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.
"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
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
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.
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.
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.
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.
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.
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.
good to know that this epidemic which was going to wipe out Africa
is just a big bubble of soap."
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.
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
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.
practical help is given to suffering people, perhaps it doesn't
matter too much whether the children are AIDS orphans or not. But
the Krynens are angry because false information continues to be
fed to Africa and the world.
is a market for many things, an experimental ground for many organisations
and a 'good conscience' ground for many charities," Philippe
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
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.
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.
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.
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.
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
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.
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." *