AIDS IN AFRICA
In Search of the Truth
By Rian Malan
Rolling Stone 22 Nov. 2001
You will be saddened to hear that Adelaide Ntsele has died. As you
may recall, she featured briefly in my article a year ago about the long,
twisted history of the song, "The Lion Sleeps Tonight," which was based on
a melody composed by her father, Solomon Linda. While I interviewed her
sisters about the life and times of their father, the great Zulu singer,
Adelaide was swooning feverishly under greasy blankets. She got up from her
sickbed only to have her picture taken. She was so weak she could barely
stand, but she wanted to be in your magazine.
I took her to hospital afterward. We sat in Emergency for a long time,
waiting for attention. Her sister Elizabeth was there, too. She's a nurse.
She looked at Adelaide's hospital card and grew very quiet. Later, she told
me there was a symbol indicating that Adelaide had come up positive on an
HIV test. Atop that she had tuberculosis and a gynecological condition that
required surgery. The operation had already been postponed repeatedly. To
Elizabeth, it looked like the the doctors had decided, "Well, this one's
had it, she'll die anyway, just let it happen." And so it did.
A year ago, the funeral scene would have written itself. I would have
described the kindly old pastor, the sad African singing, the giant iron
pots on fires for the ritual goodbye feast. I would have mentioned the
eerie absence of any reference to AIDS in the eulogies and made some rote
observation about the denial it betokened. I would have scanned the faces
of mourners, trying to pick out the one in five who were carriers of the
virus that put Adelaide in her coffin, withered and shriveled like a child.
And in the end I would have turned sadly away, lamenting a society that
allowed a thirty-seven-year-old woman to die because she couldn't afford
the drugs available to rich white people.
Instead, I spent the ceremony thinking about viral antigens, cross-reactions
and other mysteries of what Sowetans call H.I.Vilakazi, the scourge of the
deadly three letters. Then, midway through the proceedings, the pastor
broke my reverie; Perhaps the visitors would like to say something? I rose
to my feet, straightened my tie and prepared to speak my mind, but courage
failed me, so I mumbled a few platitudes instead. "It is a heartbreak that
Adelaide was taken so young," I said. "She bore terrible suffering with
enormous dignity," I said. "We will always remember her as she appears in
that picture," I concluded, nodding toward a framed portrait of a wistful
young woman with huge doe eyes and haunting cheekbones like Marlene
Dietrich's. Adelaide wanted to be a model. She never made it. I extended my
condolences to the family and sat down again.
It wasn't the eulogy Adelaide deserved, but then it wasn't the right time
or place for a great cry of rage and confusion, either. But now the
mourning is done, and there are things that must be said.
My first mistake
Africa's era of megadeath dawned in the fall of 1983, when the chief of
internal medicine of a hospital in what was then Zaire sent a
American health officials, informing them that a mysterious disease seemed
to have broken out among his patients. At the time, the United States was
being convulsed by its own weird health crisis. Large numbers of gay men
were coming down with an unknown disease of extraordinary virulence,
something never seen in the West before. Scientists called it GRID, an
acronym for Gay-Related Immune Deficiency. Political conservatives and holy
men called it God's vengeance on sinners. American researchers were thus
intrigued that a similar syndrome had been observed in heterosexuals in
Africa. A posse of seasoned disease cowboys was convened and sent forth to
On October 18th, 1993, they walked into Kinshasa's Mama Yemo Hospital, led
by Peter Piot, 34, a Belgian microbiologist who had been to the institution
years earlier, investigating the first outbreak of Ebola fever. A change
was immediately apparent. "In 1976, there were hardly any young adults in
orthopedic wards," Piot told a reporter. "Suddenly - boom - I walked in and
saw all these young men and women, emaciated, dying." Tests confirmed his
worst apprehensions: The mysterious new disease was present in Africa, and
its victims were heterosexual. When researchers started looking for the
newly identified human immunodeficiency virus, it turned up almost
everywhere - in eighty percent of Nairobi prositutes, thiry-two percent of
Ugandan truck drivers, forty-five percent of hospitalized Rwandan children.
Worse, it seemed to be spreading very rapidly. Epidemiologists plotted
figures on graphs, drew lines linking the data points and gaped in horror.
The epidemic curve peaked in the stratosphere. Scores of millions - maybe
more - would die unless something was done.
These prophecies transformed the destiny of AIDS. In 1983, it was a fairly
rare disease, confined largely to the gay and heroin-using subcultures of
the West. A few years later, it was a threat to all of humanity itself. "We
stand nakedly before a pandemic as mortal as any there has ever been,"
World Health Organization chief Halfdan Mahler told a press conference in
1986. Western governments heeded his anguished appeal for action. Billions
were invested in education and prevention campaigns. According to the
Washington Post, impoverished AIDS researchers suddenly had budgets that
outstripped their spending capacity. Nongovernmental AIDS organizations
sprang up all across Africa - 570 of them in Zimbabwe, 300 in South Africa,
1,300 in Uganda. By 2000, global spending on AIDS had risen to many
billions of dollars a year, and activists were urging the commitment of
many billions more, largely to counter the apocalypse in Africa, where 22
million were said to carry the virus and 14 million to have died of it.
And this is about where I entered the picture - July 2000, three months
after South African President Thabo Mbeki announced that he intended to
convene a panel of scientists and professors to re-examine the relationship
between the human immunodeficiency virus and AIDS. Mbeki never exactly said
AIDS doesn't exist, but his action begged the question, and the
implications were mind-bending. South Africa was said to have more HIV
infections (4.2 million) than any other country on the planet. One in five
adults were already infected, and the toll was rising daily. As his words
sank in, disbelief turned to derision.
"Ludicrous," said the Washington Post.
"Off his rocker," said the Spectator.
"A little open-mindedness is fine," said Newsday. "But a person can be so
open-minded, his brains can fall out."
The whole world laughed, and I rubbed my hands with glee: South Africa was
back on the world's front pages for the first time since the fall of
apartheid; fortune awaited the man of action. I went to see a friend
who happens also to be an AIDS epidemiologist. He was so enraged by what he
called the "genocidal stupidity" of Mbeki's initiative that he'd left work
and gone home, where I found him slumped in depression. "Hey," I said, snap
out of it. Let's make a deal." And so we did: He'd talk, I'd type, and
together we'd tell the inside story of Thabo Mbeki's AIDS fiasco. All that
remained was to consider to consider the evidence that had led our leader
According to newspaper reports, Mbeki had gleaned much of what he knew from
the Web, so I revved up the laptop and followed him into the virtual
underworld of AIDS heresy, where renegade scientists maintain Web sites
dedicated to the notion that AIDS is a hoax, dreamed up by a diabolical
alliance of pharmaceutical companies and "fascist" academics whose only
interest is enriching themselves. I visited several such sites, noted what
they had to say, and then turned to Web sites maintained by universities
and governments, which offered crushing rebuttals. Can't say I understood
everything, because the science was deep and dense, but here's the gist:
Look at AIDS from an African point of view. Imagine yourself in a mud hut,
or maybe a tin shack on the outskirts of some sprawling city. There's
sewage in the streets, and refuse removal is nonexistent. Flies and
mosquitoes abound, and your drinking water is probably contaminated with
feces. You and your children are sickly, undernourished and stalked by
diseases for which you're unlikely to receive proper treatment. Worse yet,
these diseases are mutating, becoming more virulent and drug-resistant.
Minor scourge such as diarrhea and pneumonia respond sluggishly to
antibiotics. Malaria now shrugs off treatment with chloroquine, which is
often the only drug for it available to poor Africans. Some strains of
tuberculosis - Africa's other great killer - have become virtually
incurable. Now atop all this is AIDS.
According to what you hear on the radio, AIDS is caused by a
tiny virus that lurks unseen in the blood for many years, only to emerge in
deep disguise: a disease whose symptoms are other diseases, like TB, for
instance. Or pneumonia. Running stomach, say, or bloody diarrhea in babies.
These diseases are not new, which is why some Africans have always been
skeptical, maintaining that AIDS actually stands for "American Idea for
Discouraging Sex." Others say nonsense, the scientists are right, we're all
going to die unless we use condoms. But condoms cost money and you have none,
so you just sigh and hope for the best.
Then one day you get a cough that won't go away, and you
start shedding weight at an alarming rate. You know these symptoms. In the
past, you could take some pills and they would usually go away. But the
medicines don't work anymore. You get sicker and sicker. You wind up in the
The orthodox scientists, if they could see you lying there,
would say your immune system has been destroyed by HIV, allowing the
tuberculosis (or whatever) to run riot. The dissidents would say no way - the
virus is a harmless creature that just happens to accompany immune-system
breakdown caused by other factors, in this case a lifetime of hunger and
to tropical pathogens.
Incensed by this, the orthodoxy whistles up a truckload of
studies from all over Africa showing that HIV-positive hospital patients die at
astronomical rates relative to their HIV-negative counterparts. The dissidents
claim to be unimpressed. This proves nothing, they say except that dying
hospital patients carry the virus.
The orthodoxy grits its teeth. There's only one way to crush
these rebels, and that's to show that AIDS is a new disease that has caused a
massive increase in African mortality, which is of course the truth as we know
it: 22 million Africans infected, with 14 million more already dead from
These frightening numbers were all that mattered, it seemed
to me. Once they were shown to be accurate, further debate would be rendered
obscene, and Thabo Mbeki would be guilty as charged, a fool who'd allowed himself
to be swayed by a tiny band of heretics universally dismissed as wackos, fringe lunatics
and scientific psychopaths. So I set out to confirm the death toll. Just that. I thought it
would be easy - a call or two, maybe a brief interview. I picked up the phone. It was my
A Forbidden Thought
There was a time when I imagined medical research as an idealized endeavor,
carried out by scientists interested only in truth. Up close, it turns out to be much like
any other human enterprise, riven with envy, ambition and the standard jockeying for position.
Labs and universities depend on grants, and grantmaking is fickle, subject to the vagaries
of politics and intellectual fashion, and prone to favor scientists whose work grips the
popular imagination. Every disease has champions who gather the data and proclaim the
threat it poses. The cancer fighters will tell you that their crisis is deepening, and more
research money is urgently needed. Those doing battle with malaria make similar pronouncements,
as do those working on TB, and so on, and so on. If all their claims are added together, you
wind up with a theoretical global death toll that "exceeds the number of humans who die
annually by two- to threefold," said Christopher Murray, a World Health Organization director.
Malaria kills around 2 million humans a year, roughly the same number as AIDS, but malaria
research currently gets only a fraction of the resources devoted to AIDS. Tuberculosis
(1.7 million victims a year) is similarly sidelined, to the extent that there were no new TB
drugs in development at all as of 1998. AIDS, on the other hand, is replete, employing an
estimated 100,000 scientists, sociologists, caregivers, counselors, peer educators and stagers
of condom jamborees. Until the attacks of September 11th diverted the world's anxieties
(and charity dollars), the level of funding for AIDS grew daily as foundations, governments
and philanthropists such as Bill Gates entered the field, unnerved by the bad news, which
usually arrived in the form of articles describing AIDS as a "merciless plague" of "biblical
virulence," causing "terrible depredation" (as Time recently put it) among the world's poorest
These stories all originate in Africa, but the statistics that support them emanate from the
suburbs of Geneva, where the World Health Organization has its headquarters. Technically
employed by the United Nations, WHO officials are the world's disease police, dedicated to
eradicating illness. They crusade against old scourges, raise the alarm against new ones,
fight epidemics, and dispense grants and expertise to poor countries. In
conjunction with UNAIDS (the joint United Nations Programme on HIV/AIDS, based
at the same Geneva campus), the WHO also collects and disseminates
information about the AIDS pandemic.
In the West, the collection of such data is a fairly simple matter: Almost
every new AIDS case is scientifically verified and reported to government
health authorities, who inform the disease police in Geneva. But AIDS
mostly occurs in Africa, where hospitals are thinly spread, understaffed
and often bereft of the laboratory equipment necessary to confirm HIV
infections. How do you track an epidemic under these conditions? In 1985,
the WHO asked experts to hammer out a simple description of AIDS, something
that would enable bush doctors to recognize the symptoms and start counting
cases, but the outcome was a fiasco - partly because doctors
struggled to diagnose the disease with the naked eye, but mostly because
African governments were too disorganized to collect the numbers and send
them in. Once it become clear that the case-reporting system wasn't
working, the WHO devised an alternative, by which Africa's AIDS statistics
are now primarily based.
It works like this: On any given morning anywhere in sub-Saharan Africa,
you'll find crowds of expectant mothers ling up outside government prenatal
clinics, waiting for a routine checkup that includes the drawing of a blood
sample to test for syphilis. According UNAIDS, "anonymous blood specimens
left over from these tests are tested for antibodies to HIV," a ritual that
usually takes place once a year. The results are fed into a computer model
that uses "simple back-calculation procedures" and knowledge of "the
well-known natural course of HIV infection" to produce statistics for the
continent In other words, AIDS researchers descend on selected clinics,
remove the leftover blood samples and screen them for traces of HIV The
results are forwarded to Geneva and fed into a computer program called
Epi-model: If a given number of pregnant women are HIV-positive, the
formula says, then a certain percentage of all adults and children are
presumed to be infected, too. And if that many people are infected, it
follows that a percentage of them must have died. Hence, when UNAIDS
announces 14 million Africans have succumbed to AIDS, it does not mean 14
million infected bodies have been counted. It means that 14 million people
have theoretically died, some of them unseen in Africa's swamps,
shantytowns and vast swaths of terra incognita.
You can theorize at will about the rest of Africa and nobody will ever be
the wiser, but my homeland is different - we are a semi-industrialized
nation with a respectable statistical service. "South Africa," says Ian
Timaeus, London School of Hygiene and Tropical Medicine professor and
UNAIDS consultant "is the only country in sub-Saharan Africa where
sufficient deaths are routinely registered to attempt to produce national
estimates of mortality from this source." He adds that, "coverage is far
from complete," but there's enough of it to be useful - around eight of ten
deaths are routinely registered in South Africa, according to Timaeus,
compared to about 1 in 100 elsewhere below the Sahara.
It therefore seemed to me that checking the number of registered deaths in
South Africa was the surest way of assessing the statistics from Geneva, so
I dug out the figures. Geneva's computer models suggested that AIDS deaths
here had tripled in three years, surging from 80,000-odd in 1996 to 250,000
in 1999. But no such rise was discernable in total registered deaths, which
went from 294,703 to 343,535 within roughly the same period. The
discrepancy was so large that I wrote to make absolutely sure I had
understood these numbers correctly. Both parties confirmed that I had, and
at that exact moment, my story was in trouble. Geneva's figures reflected
catastrophe. Pretoria's figures did not. Between these extremes lay a gray
area populated by local experts such as Stephen Kramer, manager of
insurance giant Metropolitan's AIDS Research Unit, whose own computer model
shows AIDS deaths at about one-third Geneva's estimates. But so what? South
African actuaries don't get a say in this debate. The figures you see in
your newspapers come from Geneva. The WHO takes pains to label these
numbers estimates only, not rock-solid certainties, but still, these are
estimates we all accept as the truth.
But you don't want to hear this, do you? Nor did I. It spoiled the plot, so
I tried to ignore it. Since it was indeed true that the very large numbers
of South Africans were dying, then the nation's coffin makers had to be
laboring hard to keep pace with growing demand. One newspaper account I
found told of a company called Affordable Coffins, purveyor of cheap
cardboard caskets, which had more orders than it could fill. But the firm
was barely two months old when the story ran, and two rival
who launched similar products a few years back had gone under. "People
weren't interested." said a dejected Mr. Rob Whyte. "They wanted coffins
made of real wood."
So I called the real-wood firms, three industrialists who manufactured
coffins on an assembly line for the national market. "It's quiet," said
Kurt Lammerding of GNG Pine Products. His competitors concurred - business
was dead, so to speak.
"It's a fact," said Mr. A. B. Schwegman of B&A Coffins. "If you go on what
you read in the papers, we should be overwhelmed, but there's nothing. So
what's going on? You tell me."
I couldn't, although I suspected it might have something to do with race.
Since the downfall of apartheid, in 1994, illegal backyard funeral parlors
have mushroomed in the black townships, and my sources couldn't discount
the possibility that these outfits were scoring their coffins from the
underground economy. So, I called a black-owned firm, Mmabatho Coffins, but
it had gone out of business, along with some others I tried calling. This
was getting seriously weird. The death rate had almost doubled in the past
decade, according to a recent story in South Africa's largest newspaper.
"These aren't projections," said the Sunday Times. "These are the facts."
And if the facts were correct, I thought, someone somewhere had to be
prospering in the coffin trade.
Further inquiries led me to Johannesburg's derelict downtown, where a giant
multistory parking garage has recently been transformed into a vast warren
of carpentry workshops, each housing a black carpenter, set up in business
with government seed money. I wandered around searching for coffin makers,
but there were only two. Eric Borman said business was good, but he was a
master craftsman who made one or two deluxe caskets a week and seemed to
resent the suggestion his customers were the sort of people who died of
AIDS. For that, I'd have to talk to Penny. Borman pointed, and off I went,
deeper and deeper into the maze. Penny's place was locked up and deserted.
Inside, I saw unsold coffins stacked ceiling-high, and a forlorn CLOSED
sign hung on a wire.
At that moment, a forbidden thought entered my brain. This may sound crazy
to you, thousands of miles away, but put yourself in my shoes. You live in
Africa - OK , in the post-colonial twilight of Johannesburg's once-white
suburbs, but still, close enough to the AIDS front line. For years, experts
tell you that the plague is marching down the continent, coming ever
closer. At first nothing happens, but there dawns a day when the HIV
estimates start rising around you, and by 2000 the newspapers are telling
you that one in five adults on your street is walking dead.
This has to be true, because it's coming from experts,
so you start looking for evidence. Laston, the gardener at Number 10, is
suspiciously thin, and has a hacking
couch that won't go away. On the far side of the golf course, Mrs. Smith
has just buried her beloved servant. Mr. Beresford's maid has just died,
too. Your cousin Lenny knows someone who owns a factory where all the
workers are dying. Your newspapers are regularly predicting that the
economy will surely be crippled, and schooling may soon collapse because so
many teachers have died.
But then you find yourself staring into Penny's failed coffin workshop and
you think, Jesus, maybe something is wrong here...
Is this likely? Look, I believe that AIDS exists and it's killing Africans.
But as many as all the experts tell us? Hard to say. In my suburb, I can
assure you, people's brains are so addled by death propaganda that we
automatically assume almost everyone who falls seriously ill or dies has
AIDS, especially if they're poor and black. But we don't really know for
sure, and nor do the sufferers themselves, because hardly anyone has been
tested. "What's the point?" asks Laston, the ailing gardener. He knows
there's no cure for AIDS, and no hope of obtaining life-extending
anti-retrovirals. Last winter, he came down with a bad cough, and everyone
said it was AIDS, but it wasn't - come summer, Laston got better. Then
Stanley the bricklayer became our street's most likely case. Stan
maintained he had a heart condition, but behind his back, everyone was
whispering, "Oh, my God, it's AIDS." But was it? We had no idea.
We were playing a game, driven by hysteria.
No one wanted to hear this. Worried friends slipped newspaper clippings
into my mailbox: CEMETERY OVERFLOWS....HOSPITALS OVERWHELMED....PRISON
DEATHS UP 535 PERCENT. I checked out all the evidence, but often there was
some other possible explanation, like cut-price burial plots or a TB
epidemic in the overcrowded jails or a funding crisis in government
hospitals. After months of this, even my mother lost patience. "Shut up!"
she snapped. "They'll put you in a straitjacket." Mother knows best, but I
just couldn't get those numbers out of my head: 294,703 registered deaths
in 1996, 343,535 four years later. I called my friend the AIDS
epidemiologist and said, "Listen, I am beset by demons and heresies, can you
not save me?" So we had lunch, and I aired my doubts, whereupon he pointed
in the direction where truth lay, and I set out to find it.
A Bell is Rung
And here we are on a hilltop on the equator, overlooking the landscape
where Africa's first recorded outbreak of AIDS took place. It's a village
called Kashenye, which lies on the border between Uganda and Tanzania.
close to where the Kagera River flows into Lake Victoria. In 1979 or
thereabouts, according to local legend, a trader crossed the river in a
canoe to sell his wares in Kashenye. Business done, he bought some beers
and relaxed in the company of a village girl. Some time later, she fell
victim to a wasting disease that refused to respond to any known
medication, Western or tribal.
Not long after, according to Edward Hooper in his book Slim, a similar
drama unfolded in Kasensero, a fishing village over on the Uganda side of
the river. There the first victim was also a local girl, and the agent of
infection was said to have been a visitor from Kashenye. In due course,
several more citizens of Kashenye contracted the wasting disease. Their
neighbors cried foul, accusing Kashenye of putting a hex on them. Kashenye
responded with similar allegations. Soon, villagers on both banks of the
river were discarding objects brought from the other side, believing them
to be bewitched. But nothing helped. By 1983, the contagion was in all the
cities on the Western shore of Lake Victoria. Within a few years the
region became known as the epicenter of Africa's AIDS epidemic, and
Ugandan president Yoweri Museveni was predicting that "apocalypse" was
His prophesy was based largely on testing done among small groups of
high-risk subjects. Many factors were unknown, however, including the true
extent of infection in the general populace, the rate at which it was
spreading, the speed at which it killed. To formulate an effective battle
plan, AIDS researchers desperately needed more data in these areas.
They cast around for a place to study, and lit on the Masaka district in
Uganda, a ramshackle area just west of Lake Victoria and probably 100 miles
north of Ground Zero. The rate of infection there among adults was not
particularly high - just more than eight percent - but there were other
considerations making it a good place to study: The district was
politically stable, and there was an international airport three hours
away. In 1989, a Dutch epidemiologist named Daan Mulder began to lay the
groundwork for what would ultimately become the longest and most important
study of its kind in Africa.
Assisted by an army of of field workers, Mulder drew a circle around
fifteen villages outside Masaka and proceeded to count every resident. Then
he took blood from all those who were willing - 8,833 out of 9,777
inhabitants - screened it for HIV infections and sat back to see what
happened. Every household was visited at least once a year, and every death
was noted and entered into Mulder's database, along with the deceased's HIV
The first results were published in 1994, and they were devastating. The
HIV-infected villagers of Masaka were dying at a rate fifteen times higher
than their uninfected neighbors. Young adults with the virus in their
bloodstream were sixty times more likely to perish. Overall, HIV-related
disease accounted for a staggering forty-two percent of all deaths. The
AIDS dissidents were crushed, HIV theory was vindicated. "If there are any
left who will not even accept [this]," commented the U.S. Centers for
Disease Control upon the release of the results, "their explanation of how
HIV-seropositivity leads to early death must be very curious indeed."
Clearly, only a fool would second-guess such powerful evidence, so I just
visited the villages where Mulder's work was done, verified what he'd found
and headed back toward the airport, my story about Mbeki's stupidity back
on track. But on my way I spent an hour or two in Uganda's Statistics
Office, and what I learned there changed things yet again.
In 1948, Uganda's British rulers attempted a rough census in the Masaka area
and concluded that the annual death rate was "a minimum of twenty-five to
thirty per thousand." A second census, in 1959, put the figure at
twenty-one deaths per thousand. By 1991, it had fallen to sixteen per
thousand. Enter Daan Mulder with his blood tests, massive funding and
armies of field workers. He counted every death over two years, and then
five, and here is his conclusion: The crude annual death rate in Masaka, in
the midst of a horrifying AIDS plague, was 14.6 per thousand - the lowest
I was relieved to discover that there was another possible interpretation
of these statistics. Daan Mulder's work began at a time when Uganda was
emerging from two decades of terror and chaos. Doctors had fled the
country, hospitals had collapsed and nobody kept track of mortality trends
in the dark years of the Seventies and Eighties. According to British
statistician Andrew Nunn, one of Mulder's collaborators, disease-related
rates must have fallen to all-time low levels in the Seventies, when no one
was counting, and then surged massively with the advent of AIDS around
"In fact," says Nunn, "evidence suggests it's epidemic." (Mulder himself
cannot be asked to explain his findings - he has since died of
Nunn's explanation may be so, but the same can't apply to
neighboring Tanzania, which embarked in 1992 on an even larger mortality
study. Like Mulder's, it was funded by the British government and supported
by scientists from the British universities. The Adult Morbidity and
Mortality Project recruited 307,912 participants, each of whom was visited
at least once a year in the next three years and questioned about recent
deaths or disease. The final results were rather like Masaka's: AIDS was
the leading reported cause of adult mortality, but the average death rate
in the communities studied was 13.6 per thousand - ten percent lower than
the death rate measured in the census of 1988, which was rated "close to
100 percent" complete by Dr. Timaeus, the UNAIDS consultant. Timaeus is a
leading authority on African mortality in th AIDS era, and it was to him
that my difficult question ultimately fell.
Professor Timaeus," I said in his London office, "this study appears to
show that there was no increase in the death rate between 1988 and 1995, in
the heart of Tanzania's AIDS epidemic."
He shrugged. "This survey covered only part of the country," he said.
"True," I said, "but a fairly large part, with hundreds of thousands of
"But were they representative?" he countered.
I had no idea. Timaeus smiled and said, "I think this is the
more critical evidence."
Whereupon he produced a sheath of graphs and papers and laid them on the
table. There was, he said, a "regrettable" lack of knowledge about
mortality trends in Africa, attributable to "inertia," indifference and a
crippling lack of up-to-date data. These factors bedeviled the demographer,
but Timaeus said he knew of several ways around them, most dramatic of
which is the so-called sibling-history technique of mortality estimation.
It works like this:
Since 1984, researchers financed by the U.S. Agency for International
Development have conducted detailed health interviews with several
thousand mothers in developing countries worldwide. Among the questions put
to them are these: How many children did your mother have? How many are
still alive? When did the others die? Timaeus realized that close analysis
of the answers might reveal trends that were failing to show up elsewhere.
He set to work, and published the results in the journal AIDS
in 1998. "In just six years (1989-1995) in Uganda," he wrote, "men's death
rates more than doubled." Similar trends were revealed in Tanzania, he
reported, where "men's deaths apparently rose eighty percent" in the same
Again, this seemed to settle the matter, but again, there were puzzling
complications. For a start, Timaeus' study coincided with Daan Mulder's
epic mortality study, which ran for seven years without detecting any
significant change in the death rate. The same is true of
Tanzania's giant adult-mortality survey, which fell in the heart of the
period when Timaeus says male mortality was surging upward but which failed
to document any such thing.
Could there have been some problem with Timaeus' data? Kenneth Hill is the
Johns Hopkins university demographer who helped conceive the
sibling-history technique. Recently, he and his team embarked on a
worldwide evaluation of its performance in the field, to check on its
accuracy. Last year, an article co-authored by Hill reported that the
method was prone to something called, "downward bias" - meaning that people
remember recent deaths pretty clearly, but those from years back tend to
fade. According to the article, which appeared in Studies in
Family Planning, this usually leads to a false impression of rising
mortality rates as you near the present. This has happened even in counties
where there was little or no AIDS. In Namibia, for instance, the sibling
method detected a 156 percent rise in the fourteen years prior to 1992,
when the country's HIV infection rate ranged from zero to one percent.
"This lack of precision," Hill and his associate wrote, "precludes the use
of these data for trend analysis."
"I disagree," said Timaeus, who believes they got their math wrong. Neither
Hill or any members of his team wanted to respond on the record, but I drew
one of them into a conversation on another subject.
"Do you accept the high levels of HIV infection being reported by Geneva?"
"I don't have much faith," he said. "It's essentially a modeling exercise,
and the exercise has always seemed to have a political dimension."
That rung a bell. I was living in Los Angeles in 1981, when the very first
cases of GRID were detected. I knew men who were stricken, and I
sympathized entirely with their desperation. They wanted government action
and knew there would be little as long as the disease was seen as a
of queers, junkies and Haitians. So they forged an alliance with powerful
figures in science and the media and set forth to change perceptions, armed
inter alia with potent slogans such as "AIDS is an
equal-opportunity killer" and "AIDS threatens everyone." Madonna, Liz
Taylor and other stars were recruited to drive home the message to the
straight masses: AIDS is coming after you, too.
These warnings were backed backed up by estimates such as the one issued by
the CDC in 1985, stating that 1.5 million Americans were already
HIV-infected, and the disease was spreading rapidly. Dr Anthony Fauci, now
head of the National Institute of Allergic and Infectious diseases,
prophesied that "2 to 3 million Americans would be HIV-positive within a
decade. Newsweek's figures in a 1986 article were at least
twice as high. That same year, Oprah Winfrey told the nation that "by 1990
one in five" heterosexuals would be dead of AIDS. As the hysteria
intensified, challenging such certainties came to be dangerous. In 1988 New
York City Health Commissioner Stephen C. Joseph reviewed the city's estimate
of HIV infections, concluded that the number was inaccurate and halved it,
from 400,000 to 200,000. His office was invaded by protesters, his life
threatened. Demonstrators tailed him to meetings, chanting, "Resign,
In hindsight, Dr. Joseph's reduced figure of 200,000 might itself be an
exaggeration, given that New York City has recorded a total of around
120,000 AIDS cases since the start of the epidemic two decades ago. In
1997, a federal health official told the Washington Post that
by his calculation, the true number of HIV infections in the United States
back in the mid-Eighties must have been around 450,000 - less than
one-third of the figure put forth at the time by the CDC.
If the numbers could be gotten so wrong in America, what are we to make of
the infinitely more dire death spells cast upon the developing world? In
1993, Laurie Garrett wrote in her book The Coming Plague that
Thailand's AIDS epidemic was "moving at super-sonic speed." It has stalled
at just below two percent, according to UNAIDS. In 1991 All India Institute
of Medical Sciences official Vulmiri Ramalingaswami said AIDS in India "was
sitting on top of a volcano," but infection levels there have yet to crest
one percent. The only place where the AIDS apocalypse has materialized in
its full and ghastly glory is in Geneva's computer models of the African
pandemic, which show millions dead and far worse coming.
Why Africa, and Africa only? I now know a possible reason. Read on.
"Crap!" An Expert Declares
In many ways, the story of AIDS in Africa is a story of the gulf between
rich and poor, the privileged and the wretched. Here is one way of
calibrating the abyss.
Let's say you live in America, and you committed an indiscretion with drugs
and needles or unprotected sex a few years back, and now find yourself
plagued by ominous maladies that won't go away. Your doctor frowns and
says you should have an AIDS test. She draws a blood sample and sends
it to a laboratory, where it is subjected to an exploratory ELISA
(enzyme-linked immunosorbent assay) test. The ELISA cannot detect the
virus itself, only the antibodies that mark its presence. If your
blood contains such antibodies, the test will "light up," or change
color, whereupon the lab tech will repeat the experiment. If the
second ELISA lights up, too, he'll do a confirmatory test using
the more sophisticated and expensive Western Blot method. And if
that confirms the infection, the Centers for Disease Control
recommends that the entire procedure be repeated using a new blood
sample, to put the outcome beyond all doubt.
In other words, we're talking six tests in all, doubly confirmed. Such a protocol is probably
foolproof, but as you draw away from the First World, health-care standards decline and
people grow poorer, meaning that confirmatory tests become prohibitively expensive. In
Johannesburg, for instance, a doctor in private practice will typically want three consecutive
positive ELISAs before deciding that you are HIV-positive. But his counterpart in a
government-sponsored testing center has to settle for two ELISA tests.
In the annual pregnancy-clinic surveys on which South Africa's terrifying AIDS
statistics are based, the protocol is one ELISA only, unconfirmed by anything. In America
one ELISA means almost nothing. "Persons are positive only when they
are repeatedly reactive by ELISA and confirmed by Western Blot," says the CDC.
The companies that manufacture ELISAs agree: The tests must be confirmed
by other means. "Repeatedly reactive specimens may contain antibodies" to HIV,
one firm's literature says, "Therefore additional, more specific tests must be run to
verify a positive result."
In parts of Africa, however, at least for the pupose of data-gathering, such precautions
are deemed unnecessary. That's partly because the World Health Organization itself
actually evalutates commercial HIV tests as they come on the market. In these trials,
new tests are measured against a panel of several hundred blood samples from all
over the world. Some of the samples are HIV-positive, some are not. The ELISAs are
tested to make sure they can tell which are which. Among the scores of brands
evaluated throughout the years, a handful have proved to be useless. But those
manufactured by established biotechnology corporations usually pass with flying
colors, typically scoring accuracy rates close to perfect.
In South Africa, such outcomes were often cited in furious attacks on President Mbeki.
"HIV tests such as the latest-generation ELISA are now more than ninety-nine percent
accurate." reported the Weekly Mail and Guardian. The tests have confidence
levels of 99.9 percent, said professor Malegapuru Makoba, head of the Medical Research
Council. Science had spoken, and science was unanimous: The tests were fine, and
Mbeki was a fool, according to the Weekly Mail, "trying to be a Boy's Own basement
lab hero of AIDS science."
It was a good line. I laughed, too, but there came a moment when it ceased to be funny.
My education in the complexities of the ELISA test started when I came across an article in
a scientific journal published last year. It told a story that began in 1994, when researchers
ran HIV tests on 184 high-risk subjects in a South African mining camp. Twenty-one of
the subjects came up positive or borderline positive on at least one ELISA. But the results
were confusing: A locally manufactured test indicated seven, but different people in almost
every case. A French test declared fourteen were infected.
It seemed something was confounding the tests, and the prime suspect was
plasmodium falciparum, one of the parasites that causes malaria: Of the
twenty-one subjects who tested positive, sixteen had had recent malaria infections and
huge levels of antibody in their veins. The researchers tried an experiment: They
formulated a preparation that absorbed the malaria antibodies, treated the blood samples
with it, then retested them. Eighty percent of the suspected HIV infections vanished.
The researchers themselves admitted that these findings were inconclusive. Still,
considering that Africa is home to an estimated ninety percent of the world's malaria cases,
the implications of the report seemed intriguing. I asked Dr. Luc Noel, the WHO's
blood-transfusion-safety chief, for his opinion. He insisted there was no cause for concern.
Then he handed me a booklet detailing the outcome of the WHO's evaluation of commercial
ELISA assays. In it, I found two of the three tests that had been used in South America -
the very ones that supposedly went haywire, kits manufactured in Britain and France,
respectively. One was rated By WHO as ninety-seven percent accurate, the other,
On the other hand, I couldn't help noticing that according to the literature Noel had
given me, the disease police apply at least five confirmatory tests to every blood sample
before such high accuracy rates are achieved. What happens if you use just two, or one?
And if your subjects are Africans whose immune systems are often, as UNAIDS head Peter
Piot once phrased it, "in a chronically activated state associated with chronic viral and parasitic
exposure." There may be an answer of sorts.
The Uganda Virus Research Institute is possibly Africa's greatest citadel of HIV studies.
Seated on a hilltop overlooking Lake Victoria and generously funded by the British government,
the UVRI employs around 200 scientists and support personnel, runs an array of advanced
AIDS studies, tests experimental drugs, labors to produce an AIDS vaccine and has generated
scores of scientific papers during the past decade.
In 1999, the Institute screened thousands of blood samples using ELISA tests that has
achieved excellent results in a WHO evaluation. Test-driven in a lab in Antwerp, Belgium,
one test scored 99.1 percent accuracy, while the other achieved a perfect 100. But in the
field, in Africa, it was another story entirely. There, exactly 3,369 samples came up positive
on one ELISA, but only 2,237 of those (66 percent) remained positive after confirmatory
testing. In other words: a third of Ugandans who tested positive on at least one of these
supposedly near-perfect ELISAs were not carrying the virus. What does this say about countries
where AIDS statistics are based on a single ELISA? A high-ranking source at UVRI - one who
insisted on anonymity - said that the WHO estimates for AIDS in such countries "could be as
much as one-third higher than they actually are."
I took this up with Dr. Neff Walker, a senior adviser at UNAIDS, who at first seemed puzzled.
"The standard WHO/UNAIDS protocol calls for two tests in countries with a higher prevalence,"
But according to a WHO report, "Confirmation by a second test is necessary only in settings
where estimated HIV prevalence is known to be less than ten percent." This means that in
countries like mine, estimates are based on one unconfirmed test.
Dr. Walker conceded that, but said it wasn't particularly important given that most
African counties have what he called "quality assurance" programs in place.
"I feel," he said, "that if a government found any evidence of too many false positives in their
testing, they would report it. Governments would like to find evidence of a lower prevalence,
as would we all, and since they have the data to easily check your hypothesis, they would do
so and report it."
But would they? High AIDS numbers are not entirely undesirable in poverty-stricken African
countries. High numbers mean deepening crisis, and crisis typically generates cash. The
results are now manifest: planeloads of safari scientists flying in to oversee research projects
or cutting-edge interventions, and bringing with them huge inflows of foreign currency - about $1
billion a year in AIDS-related funding, and most of it destined for the countries with the highest
numbers of infected citizens.
On the ground, these dollars translate into patronage for politicians and good jobs for their
struggling constituents. In Uganda, an AIDS councelor earns twenty times more than a
schoolteacher. In Tanzania. AIDS doctors can increase their income just by saving the
hard-currency per diums they earn while attending international conferences. Here in South
Africa, entrepreneurs are piling into the AIDS business at an astonishing rate, setting up
consultancies, selling herbal immune boosters and vitamin supplements, devising new
insurance products, distributing condoms, staging benefits, forming theater troupes that take
the AIDS prevention message into schools. A friend of mine is co-producing a slew of TV
documentaries about AIDS, all for foreign markets. Another friend has got his fingers
crossed, since his agency is on the shortlist to land a $6 million safe-sex ad campaign.
Sometimes it seemed I was the only one in South Africa who found this odd. Dr. Ed Rybicki,
a University of Cape Town microbiologist, caught sight of part of this article while it was
being prepared and found it alarming. "Vast inflation of HIV figures by bad tests?" he wrote in
an email. "Naaaaah. The test manufacturers have done a hell of a lot of research, which
is not published because it is part of quality control, rather than part of a global cartel conspiracy
to make Africans HIV-positive!" He allowed that there was "probably some truth" in stories about
"various factors confusing the HIV test" but accused me of stringing them together in an
irresponsible way. "Crap!" he ultimately declared. "Utter garbage."
I defer to Dr. Rybicki in matters of science, but his denunciation rested on the flawed
assumption that, as he wrote to me, "In South Africa, tests are repeated, and repeat positives
are confirmed by another method, meaning there is a threefold redundancy." Maybe that's
how it works in universities or research labs. But when it comes to UNAIDS statistics, one
test is evidently enough.
Can You Wait Ten Years?
And so we return to where we started, standing over a coffin under a bleak Soweto sky, making
a clumsy speech about a sad and premature death. Adelaide Ntsele died of AIDS, but the word
didn't appear on her death certificate. Here in Africa, those little letters stigmatize, so doctors
usually put down something gentler to spare the family further pain. In Adelaide's case, they wrote
TB. But her sister Elizabeth had no such need of such false consolation. She donned a
red-ribbon baseball cap and appeared on national TV, telling the truth: "My sister had HIV/AIDS."
As a nurse, Elizabeth had no qualms with the doctors' diagnosis, and she concurred with their
decision to forgo surgery and let Adelaide die. "It was God's will," she says, and she was at
peace with it. I was the one beset by all the doubts.
Did Adelaide really die of AIDS? It certainly looked that way, but she also had TB, the
second-most-frightening disease in the world today, on the rise everywhere, even in rich
countries, sometimes in a virulent drug-resistant form that kills half its victims, according to the
CIA's recent report on infectious disease. Eight years ago, the WHO declared resurgent TB a
"global emergency," but the contagion continues to spread, particularly in the cluster of
southern African countries simultaneously stricken by the worst TB and HIV epidemics
on the planet. It takes a blood test to establish the underlying presence of an HIV infection in
people with TB, and at least one scientist who knows about these things has imputed that the
tests might not be entirely reliable.
Back in 1994, Max Essex, head of the Harvard AIDS Institute, and some collegues of his
observed a "very high" (sixty-three percent) rate of ELISA false positives among lepers in
central Africa. Mystified, they probed deeper and pinpointed the cause: two cross-reacting
antigens, one of which, lipoarabinomannan, or LAM, also occurs in the organism that
causes TB. This prompted Essex and his collaborators to warn that ELISA results should be
"interpreted with caution" in areas where HIV and TB were co-endemic. Indeed, they speculated
that existing antibody tests "may not be sufficient for HIV diagnosis" in settings where TB and
related diseases are commonplace.
Essex was not alone in warning us that antibody tests can be confused by diseases and
conditions having nothing to do with HIV and AIDS. An article in the Journal of the American
Medical Association in 1996 said that "false-positive results can be caused by nonspecific
reactions in persons with immunologic disturbances (e.g., systemic lupus erythematosus or
rheumatiod arthritis), multiple transfusions or recent influenza or rabies vaccination.... To prevent
the serious consequensces of a false-positive diagnosis of HIV infection, confirmation of
positive ELISA results is necessary.... In practice, false-positive diagnoses can result form
contaminated or mislabeled specimens, cross-reacting antibodies, failure to perform
confirmatory tests.... or misunderstanding of reported results by clinicians or patients." These
are not the only factors that can cause false positives. How about pregnancy? The U.S. National
Institutes of Health states that multiple pregnancy can confuse HIV tests. In the past few years,
similar claims have been made for measles, dengue fever, Ebola, Marburg and malaria (again).
But let's put all that science aside, for a moment. Lots of people thoght it was wrong for me even
to pose questions such as these, especially at a moment when rich countries, rich corporations
and rich men were considering billion-dollar contributions to a Global AIDS Superfund. They were
brought to this point by a ceaseless barrage of stories and images of unbearable suffering in
Africa, all buttressed by Geneva's death projections. Casting doubt on those estimates was
tantamount to murder, or so said Dr, Rybicki, the Cape Town microbiologist.
"AIDS is real, and is killing Africans in very large numbers," he wrote. "Presenting arguments
that purport to show otherwise in the popular press is simply going to compound the damage
already done by Mbeki. And a lot more people may die who may not have otherwise."
Rybicki was right. But what are the facts? After a year of looking, I still can't say for sure.
When I embarked on this story, you may recall, no massive rise in registered deaths was
discernable in South Africa. A year later, I decided to return to my point of departure to see
if the discrepancy persisted. I wrote to the country's Department of Home Affairs,which
manages the death register, and asked for the latest numbers. In response came a set of figures
somewhat different from those initially provided - the consequence, I am told of people who died
without any identity documents. Here is the final analysis:
in 1996 - 363,238.
Deaths registered in 2000 - 457,335.
As you see, registered deaths have indeed risen - not to the extent prophesied by the
United Nations, perhaps, but there is definite movement in an ominous direction. Deaths are up
across the board, but concentrated in certain critical age groups: females in their twenties, and males
age thirty to thirty-nine.
A team of experts commissioned by the Medical Research Council has studied this changing death
pattern and found it to be "largely consistent with the pattern predicted by [ours] and other models of
the AIDS epidemic." Their conclusion: AIDS has become the "biggest cause" of mortality in South
Africa, responsible for forty percent of adult deaths.
And yet, and yet, and yet, even this is no the end of our tale, because another governmental body,
Stats SA, has challenged these findings. The Washington Post reported that the South African
census bureau called the MRC study "badly flawed," saying "the samples were not representative, and
assumptions about the probability of the transmission of the virus that causes AIDS were not
And that's my story: enigma upon enigma, riddle leading to riddle, and no reprieve from doubt. Local
actuarial models say 352,000 South Africans have died from AIDS since the epidemic began. The MRC
says 517,000. The figure from a group I haven't even mentioned yet, the United Nations Population
Division, is double that - 1.06 million - and the unofficial WHO/UNAIDS projections are even higher.
I have wasted a year of my time and thousands of Rolling Stone's editorial-budget dollars, and
all I can really tell you is that my faith in science has been dented. These guys can't agree on anything.
Ordinary Africans everywhere see that the scourge is moving among them. The guide who showed me
around Uganda had lost two siblings. Our driver had lost three. On the banks of the Kagera River,
where the plague began, we met a sad old man who said all five of his children had died of it.
But ask these people about access to health care, and they laugh ruefully. "The coffee price is
collapsing," they say. No one has money. We can't even afford transport to hospital, let alone medicine."
All across rural east Africa, doctors confirmed the charge: no money, no medicine. Even mission
hospitals now ask patients for money.
"What can we do?" asks Father Boniface Kaayabula, who works at a Catholic mission in rural Uganda.
"We have no money, too. We must ask people to pay, and only a very few can."
So what do poor Africans do if they fall sick? They go to roadside shacks called "drug stores"
and buy snake oil. Chloroquine for malaria, on a continent where that former miracle drug has lost
most of its curative power; nameless black-market antibiotics for lung diseases, in a setting where
up to sixty percent of pneumonia is drug-resistant; penicillin for gonorrhea, administered by an
amateur "injectionist" who might be unaware that the quantity needed to knock out the infection has
risen a hundredfold in the past decade. For the poorest of the poor, even such dubious nostrums are
beyond reach. They try to cure themselves with herbs, they fail, and they die.
What's to be done? Dr. Joseph Sonnabend is a South Africa-born physician who was running a
venereal-disease clinic in New York back in the early Eighties, when GRID first appeared. He
became known throughout the world as a pioneer in AIDS treatment. When President Mbeki
launched his controversial inquiry into the disease last year, Sonnabend came home to participate,
an experience he likens to "entering hell."
As founder of the AIDS Medical Foundation, which became the American AIDS
Research Foundation, or AmFAR, Sonnabend has no patience with those
dissidents who dispute the syndrome's existance or HIV's power to cause it.
But he also believes there are "opportunists" and "phonies" whose chief
skill is "manipulation of fear for advancement in terms of money and
power." In fact, he quit AmFAR, his own group, because he felt it was
exaggerating the threat of a heterosexual epidemic. A decade later, he's
still fighting the lonely battle for wise policies, especially in
In Pretoria, he says, one faction argued for the bulk of available funds to
be committed to the purchase of AIDS drugs. But merely dumping AIDS drugs
into resource-poor countries is pointless, Sonnabend argued, although he
does believe there are limited situations where they could be safely and
effectively used. The prevention of mother-to-child transmission is one;
another is in people with advanced disease where facilities to adequately
monitor the use of drugs are in place. Unfortunatly, the cost of
establishing an infrastructure to do this on a large scale would be
enormous, and without this hardly anyone would benefit, save drug
The answer, he feels, is to eliminate conditions that render Africans
vulnerable to HIV in the first place. A year down the line, Sonnabend is
still trying to organize an international conference to discuss the
disposition of the money lodged in the Global AIDS Superfund. The way he
sees it, $1 billion a year would be enough to transform the lives of
ordinary Africans and curb the AIDS epidemic, but only if it's not
squandered on unsustainable "drugs into people" programs.
"There's a place for AIDS drugs and prevention campaigns," he says, "but
it's not the only answer. We need to roll out clean water and proper
sanitation. Do something about nutrition. Put in some basic health
infrastructure. Develop effective drugs for malaria and TB and get them to
everyone who needs them."
On the other hand, we have researchers like the ones from Harvard
University who insist that biomedical intervetion is morally inescapeable.
"We can raise people from their deathbeds," said professor Bruce Walker.
They calculated that it should be possible to provide Africans with AIDS
drugs for as little as $1,100 a year.
Granted, says Sonnabend, but this makes little sense if that one lucky
person's neighbors are dying for lack of medicines that cost a few
So who's right? Depends on the numbers, I guess. In the end, I attempted to
bring all my unanswered questions on that topic to the man who was there
when the epidemic first hit this continent, Dr. Peter Piot, who has today
risen to the role of chief of UNAIDS.
But my call to him was directed instead to UNAIDS' chief epidemiologist, a
physician named Dr. Bernhard Schwartlander.
The UNAIDS computer model of Africa's epidemic is in fact completely
dependable, Dr. Schwartlander says because it relies on a "very simple
formula. You take the median survival time - around nine years in Africa.
You say this is roughly the distribution curve. Calculation of deaths is
completly plausable if - and this is important - you have a good idea of
the prevalence of HIV and how it spreads over time."
Why then, I asked, do we have so many different estimates of AIDS deaths in
"I'm not shocked," he said. "The models may completely disagree at a
particular point in time, but in the end the curves look incredibly
similar. They're goddamn consistant."
If that's true, I said, then why would we have 457,000 registered deaths
here last year when the UN says 400,000 of them died of AIDS? One of those
numbers must be wrong.
"You say there are 457,000 registered deaths in South Africa?"
Schwartlander said, momentarily nonplussed. "This is an estimate based on
No, said I, it's the actual number of registered deaths last year.
"We don't really know," he replied. "Things are moving very fast. What is
the total number of people who actually die? For all we know, it could be
much higher. HIV has never existed in mankind before, and there's no anchor
point set in stone." The UNAIDS numbers are, after all, only estimates. We
are not saying this is the number. We are saying this is our best
estimate.Ten years from now, we won't have these problems. Ten years from
now, we'll know everything."
Ten years! Had I known, I could have saved myself a lot of grief. For even
as I tried to track down the old numbers, bigger new ones were supplanting
them - 17 million Africans dead of AIDS and 25 million more with HIV,
UNAIDS now estimates; not one in five South African adults infected but one
in four. Are these numbers right? Who knows. Feel free to publish this,
Jann, but if it drives you as mad as it has driven me, I'll
Rian Malan is the author of "My Traitor's Heart: A South African Exile Returns
to Face His Country, His Tribe and His Conscience."