Birthplace of AIDS, three decades on

After a disease becomes pandemic — global, infamous and fast-infecting — it’s difficult to imagine that it was ever quiet and anonymous.

That it once moved slowly.

In their early days, though, infections that are spread through human-to-human contact, especially intimate contact, can only move as fast as the people who carry them. Transmission may rely on personal choices, moods, boundaries altered by a drink.

The road to the fishing town of Kasensero in Uganda is sleepy enough. The occasional small truck loaded with the catch from the lake blowing up orange dust. A bus to Kampala driving too fast, too many bags tied to the roof, too many people inside. A cyclist making occasional, weaving diversions to avoid potholes and puddles.

But it was up this road — this unremarkable road in Africa few people have ever heard of — that the HIV virus travelled on its way to infecting more than 70 million people.

Kasensero is one of a handful of places on the continent where scientists believe this thing that went on to kill so many began to spread. Around 1979, several years before it was christened with the acronyms we know it by today, HIV/AIDS became an epidemic here, killing quickly and without favour, touching each and every family in this town.

A metal customs barrier lies across the entrance to the place, a piece of rectangular tin welded on top with the word ‘stop’ painted on it, though few do. The main street leads in a straight line to Lake Victoria, Africa’s largest and the reason Kasensero exists. The stench of fish is everywhere, on everything. It comes in waves of freshness from the beach where the boats land their catches, it oozes out from behind the curtained entrances to one-room restaurants as grilling skin, it rises up stale and bilious as the remnants of years of dead Nile perch on the rubber boots of passing fishermen.

It’s mid-morning but already many of these men are back in from the lake and heading for the tiny bars that line the main street. Already many of them are drunk and, already, the many women who have come here to work as prostitutes are getting ready to join them, applying make up, picking out tight shirts, steeling themselves for another day.

Up a side street, drinking tea as a rain that has drifted in off the lake thrums the tin roof, Abdu Senkima remembers when the illness they quickly named “slim” after its most visible symptom first made itself known. At 60, he is one of the few people in Kasensero who can tell the story. Because he is one of its oldest surviving inhabitants.

“Their limbs just rotted off. All the doctors could do was watch,” he says of friends and relatives. “Life here came to a complete stop. Hardly anybody had the energy to go fishing on the lake and those who were still healthy were needed to bury the dead.”

The only busy people were tailors, he says, altering clothes for the “skinnies”.

HIV/AIDS specialists — doctors and academics — have argued for years about the origins of the virus, how it crossed from chimpanzees to humans, and how it was spread. For a time, a promiscuous Canadian flight attendant named Gaëtan Dugas was referred to as “patient zero” in the West because so many of the early cases in New York, Los Angeles and San Francisco could be traced back to him. The theory went that he had become infected in Africa on a work trip and brought the virus to the United States. More recent studies say the 1980s epidemic had its roots in the 1960s when the disease may have moved from Africa to Haiti, and from there to the US via a wave of immigration.

In Kasensero, though, everyone agrees on the name of the first person to get sick.

Nantongo Rose. First she went pale, they tell you. Her dark hair turned grey. She had a fever and swellings on her body. They tried to treat her. But she became very skinny and, quickly, she died.

“Mr. Kawnaga was the second,” says Abdu. “He had the same swellings as Nantongo. But his skin did not turn lighter. It turned darker and darker. He was suffering from diarrhoea, he lost weight and, a few months later, he was dead, too.”

Abdu looks out the window and pauses for a few seconds, thinking.

“I can’t remember who was third,” he says quietly.

Abdu thinks that about 300 people died that first year. And there was no escape. Kasensero residents, he says, couldn’t move anywhere else. Nowhere would have them. And so they stayed and tried to fight back against what most townspeople thought was some form of witchcraft, a curse. Nantongo, they said, may have stolen something from a trader with magical powers. Perhaps her family had been cursed for cattle-rustling.

“The doctors injected the people with some ineffective stuff and they used the same needle again and again,” Abdu says. “We did not know then that this would make everything worse. And we did not have condoms here in those days.”

From here, the virus travelled not only up the road to Kampala but on boats across Lake Victoria to Kenya and Tanzania. It travelled the highways of east Africa with truckers and prostitutes. Hidden in passing lives, its round particles — with a diameter of 120 nanometers, 60 times smaller than a red blood cell — would soon be known everywhere.

That the people of Kasensero pinpoint a woman as the original carrier of HIV/AIDS and not a carousing fisherman or a passing soldier, is perhaps an illustration of the place some women occupy in a town where prostitution is one of fishing’s main ancillaries. Despite the devastation brought by HIV/AIDS, that hasn’t changed. Fishermen, some of whom come alone to the town from elsewhere and stay for a month to work its waters, still seek out sex. And out-of-work women still move here to offer it to them.

Proscovia Birungi, a pretty 25-year-old with the eyes of someone much older, is one such woman. Ten minutes walk from where Abdu sits finishing his tea, is the street on which she lives. One-roomed shacks built from wood and tin sit on its filthy surface, clothes lines strung outside them being cleared by women because of the rain. A child is crying for his mother and a woman throws the contents of a bedpan from a doorway.

In her home, not much bigger than the bed it contains, Proscovia says that she sees about five men each day. That a prostitute in Kasensero would be HIV-positive is not surprising, she remarks. But she doesn’t tell her clients. And they never really ask.

Sex is cheap — at least by some standards. Depending on the girl, on her looks and her age and on how much she needs money today, about $2 to $4 will be the price.

“It is double if you want to do it without a condom,” Proscovia says. “Many girls do it that way. And, even in Kasensero, most men don’t want condoms.”

She used to be a hairdresser but she came here to work as a barmaid. When there was no money to pay her, prostitution offered a solution. She has a son, she says by way of explanation. There was a husband. But he disappeared after infecting her with the virus. Proscovia casts her eyes down when she talks about how she earns her money and her conversation is peppered with the moral consolations she offers herself. She says she refuses to work without a condom because she doesn’t want others to suffer.

“I could earn more money if I did, though,” she says. “And I have nothing to lose.”

She wants her son to become a doctor and work with HIV/AIDS patients, she says, before excusing herself to go to work. More men are coming in from the lake.

The smell of tilapia and perch being emptied from nets is easy to follow from Proscovia’s home down narrow paths, past bars, restaurants and shops until the main street reaches a T-junction that reveals the lightly rippling majesty of the lake. Long, wooden boats line its shore and groups of men sort through the catch. Old hands lead the way while young boys look on with the awe that young boys do, learning. Several of the men are drunk, the aroma of local gin mixing with that of the fish to create a pungent odour signposting the two substances that, for many here, fuel both life and death.

“Always with a condom. Only with a condom,” says 27-year-old Vincent in answer to a question but his friends start to laugh and push him. He starts to laugh, too

“I never use a condom!” a slightly unsteady man suddenly shouts breaking through the awkward, rote answers being given to a visiting journalist. “Never! It’s no fun!”

Dan is 45, has been HIV-positive for seven years and has a direct answer when asked how he feels about the possibility that he might have infected women with the virus.

“I don’t care,” he says.

Watching this scene is Moses, a large man with a gentle bearing who used to work the boats alongside men like this. People greet him as he walks through Kasensero, the drizzle coating his face. When he stops to ask how people are, he speaks quietly, listens intently and reacts with the calm of someone who’s heard it, lived it, all before.

Moses is HIV-positive and now works as a counsellor for others with the disease. Back in his home he proudly shows the different leaflets he hands out telling people how to avoid infection, the ones about condoms, those that help the infected with their diet.

His own medication sits beside the television in four containers. He lives in this room alone now having separated from his wife, who also has HIV. Together, they watched their three children die. The doctors gave no cause of death. They didn’t have to.

The job of HIV counsellor in Kasensero is not easy, he admits.

“I tell people about the infection risks, distribute condoms, and I try to make sure the patients take their drugs regularly,” he says. “But the fishermen are difficult. They are often reckless, especially when they are HIV-positive, or drunk. Or both.”

Later, back out on the main street, more clouds have drifted in from the lake and, though light, the downpour is steady. Through beaded curtains, a fisherman can be seen in a bar, dancing to a local rhythm, a smile on his face, his feet stepping in time though they are still nestled inside rubber boots that come up to his knees. Other men sit on wooden benches around the room, drinking beer from bottles and gin from tumblers.

Moses passes outside on his way to meet a friend, Abdu is back home with his family and Proscovia will either be in another of the many bars just like this one or at home with a customer. A truck laden with fish passes through the nearby customs barrier and starts up the road that leads from Kasensero. Alongside it, maybe twenty away, there is a memorial to victims of the genocide in neighbouring Rwanda. In 1994, up to 10,000 bodies washed down the Kagera River into Lake Victoria, many coming to shore in Kasensero. During the worst of the violence, they came at the rate of 100 an hour, washing up to rest in a foreign place, replacing the stench of fish with the stench of death and infecting locals with cholera.

Kasensero, it seemed to some, had been cursed again.

The memorial to the victims of HIV/AIDS is very different to the neatly tended garden and respectful plaques that remember Rwanda. It came in the form of a clinic ordered for the town by President Yoweri Museveni during 25th anniversary commemorations of the initial outbreak.

The Uganda media has since reported the building is falling into disrepair.

“It has developed several cracks,” one local politician said.

This article originally appeared in Beacon Reader, which has recently closed. I’ll likely post some more of my stories from there here. I travelled to Kasensero in 2011 when the 30th anniversary of the HIV/AIDS epidemic was being marked.

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