Newsday - July 6, 2000
Laurie Garrett, Staff Correspondent

They are orphans-left on their own by a disease that claimed their parents-now forced to roam the rocky beaches and dirty alleyways searching for sustenance and shelter. They are the third generation to suffer because of AIDS.

Their home is the birthplace of the world's most devastating plague. It was in Kansensero and then in neighboring villages of the Rakai District of Uganda that the modern global AIDS pandemic took off, sometime around 1973. While the virus has probably been infecting human beings since the 1930s, scientists say it took four decades for the epidemic to explode.

The sad saga of Kansensero and the Rakai District bears telling not only for its own sake, but because of the lessons it holds for the future of the world's worst plague in centuries. Perhaps the cruelest of those lessons is just how hard it will be to stop Africa's horrible epidemic, for Kansensero has been confronting AIDS one way or another for some 27 years, yet experts estimate 80 percent of the town's 12,000 remaining residents are HIV-positive.

The town, like many in Africa, is a victim of its war-torn past. Bullets kill today, but rapists in uniform have made HIV a weapon that kills across generations. Thirty years ago, civil war in Uganda brought marauding soldiers who picked up the virus and sowed it farther afield. Many now fear that fighting among six nations in the Democratic Republic of the Congo could provide even more fruitful ground for the plague's next crop.

This is also where the new face of the AIDS epidemic is emerging, a face that is more likely to be female and living in a rural area, presenting special problems for any response. Conquering AIDS, experts say, will require a change in how women are treated in traditionally male-dominated societies. It will also require overcoming such acute rural problems as lack of accessibility and infrastructure.

Statistics paint a mind-numbing picture of what AIDS has done worldwide. It has already killed 18.8 million people and infected another 34.5 million-some 85 percent of them Africans, according to the United Nations AIDS Programme. All 45 sub-Saharan countries have some degree of infection, but in 16 the rates exceed 10 percent and in seven more than one out of five adults are HIV positive.

The World Health Organization last month announced that average life expectancies fell six years for sub-Saharan Africa during the 1990s because of AIDS. A baby born today in Malawi can, on average, be expected to die just shy of his 30th birthday, a Zambian at age 30, Ugandan and Zimbabwean at age 32. In several African nations, boys who today are 15 years old have more than a fifty-fifty chance of dying of AIDS.

The personal picture is even more chilling.

There is no easy way to get to Kansensero, or the other villages scattered across this marshland area of southwestern Uganda. There are no medical clinics, hospitals or resident AIDS workers. Electricity comes in a battery, housing is limited to ramshackle affairs of wattle, basically mud and sticks. Lack of gasoline makes cars scarce, and employment is limited to fishing, shopkeeping and prostitution.

Yvonne Komugisha Motoro, one of the few surviving middle-aged residents, says every child she sees is an orphan. Their entire parental generation of 25- to 40-year-olds was wiped out by AIDS, as were most of her peers. This has turned the area into a demographic nightmare-few mature adults, many HIV-infected adolescents and young adults and an abundance of orphaned children.

Motoro looks down at a filthy toddler, dressed in an oversized, ripped red T-shirt. The child's huge gas-filled belly protrudes from the shirt, his hair is patchy and reddish-clear signs of malnutrition. And the watery, reddened eyes and fever betray the toddler's fight with malaria. Motoro can't help, so she just shrugs.

The toddler waddles off to join 4- and 5-year-olds who lace their way through the alleys, past colorfully dressed prostitutes who lure drunken fishermen. They race by a row of tiny stalls from which vendors sell condoms and alleged AIDS treatments. Carefully dodging the weaving drunkards and piles of dead fish and human waste, the barefoot kids settle in front of a makeshift bar, rocking to the beat of loud Afro-pop music.

"They just stroll around, hoping somebody helps them," Motoro said. "Everybody gives them food free of charge. There are 30 children who come to my house every evening for food. They can never go to school because nobody will pay their fees. They sleep in the stores at night. You can see no diapers."

Asked what future she foresees for the children, Motoro simply stares as if her questioner were quite insane. "What answer can I give to such a question," she cried. "They will make their way in the world when the time comes."

The human immunodeficiency virus probably was here during the lives of these orphans' great-grandparents. It's anybody's guess how the virus arrived, but presumably, scientists say, HIV was lurking for years, infecting only local fishermen. When the mobile fisherman made a large catch of tilapia they typically sold their take at the nearest port, then went drinking and whoring.

In 1981, Dr. David Serwadda of Makerere University in Kampala, Uganda, was dispatched to Kansensero to investigate a mysterious new disease. Pediatrician Godfrey Magumba recalled that when he attended Makerere in 1983, Serwadda's newly discovered disease was dubbed "Masaka-Kyotera Syndrome", after local Rakai District villages. Years later, blood samples Serwadda had collected were screened in England, testing positive for HIV.

The people of Kansensero insist that their community started dying off around 1973. Driving outward to neighboring villages, the dates town elders there give for first AIDS deaths come slightly later- 1974, 1976, 1979. By 1982, Uganda had an infection rate of 2 percent of its population, according to the country's vice president, Dr. Speciosa Wandira Kazibwe. For a decade thereafter HIV spread explosively in Uganda, infecting at least one of every three citizens by 1994, she said.

Down the rough, slow road from Kansensero which winds inland across the wildlife-rich marshlands, is the village of Kibumba. Life- long friends Sarapio Semanda, age 75, and Josephat Lubega, 74, spend their days on the stoop of one of the handful of shops, drinking beer. They recalled the days when, as young men, "we would send emissaries to the neighbors to select the right girl to marry," Semanda said. "And, of course, we would expect the girl to be a virgin."

Fifty-four years ago Semanda selected his wife, and they both entered their wedding bed as virgins. "The marriage system of the past was far better," he continued. "These days a girl of 15 already is not a virgin. These days it's not marriages-it's youths running into each other, getting into problems, and bouncing back to the family."

Lubega said things started changing with his children's generation, during the late 1960s, and then really fell apart in the 1970s.

"And we saw our first AIDS deaths around 1975," Semanda said, and Lubega nodded agreement. "We didn't know what was going on. It was witchcraft-that's what we thought," Semanda added. "And I have seen that those who died from the epidemic are more than have died from all other causes. There are too many."

Like Kansensero, Kibumba village was completely transformed by AIDS, and now is also devoid of adults aged 25 to 45 years.

In neighboring Kyebe village, bands of young men terrorize the community. Matilda Namuli, 80, says 1,000 of the 1,800 village residents are AIDS orphans. Namuli, who is raising more than two dozen of her orphaned grandchildren, took a visitor by the hand for a tour of her kibanja, or compound. Pointing at a mound of stones she said, "This is my husband." A few feet later, at another stone pile, "This is my first born. This is my second born. This is my grandchild who died just one week ago. This is my child who died one year ago." The list goes on and on, as Namuli's land is now more of a graveyard than a farm.

Asked to estimate how many Kyebans have died of AIDS, Namuli grew inpatient: "What's wrong with you? If I started counting we would spend all day here! My cousins lost 22 children in the last two months. Now, if every family lost 22 children in two months you can do the counts," she concluded, throwing her hands in the air.

Namuli is adamant about who to blame for spreading HIV to her village in 1975 and throughout the Rakai District: former Ugandan dictator Idi Amin.

"I am very, very sure Amin's rule brought soldiers to this area, which had never happened before. These soldiers started doing the things soldiers do," Namuli said, "I am sure that's what started this. I am sure."

Amin fled Uganda in April, 1979, to Libya. Tanzanian soldiers wreaked havoc nationwide, raping and pillaging at will, until a previous Ugandan dictator, Milton Obote, again seized power in 1981. And once again the nation faced years of torture and brutality, until 1986, when guerilla leader Yoweri Museveni-Uganda's current president- seized power.

By then AIDS was endemic across Uganda, as well as northern Tanzania. A diaspora of Tanzanian and ethnic Bugandan women, having been defiled by soldier rapists, had spread across Africa as prostitutes. The shamed women took HIV with them, carrying the epidemic to Nairobi, Kenya; Dar es Salaam, Tanzania; Kigali, Rwanda; even as far away as Kinshasa, Democratic Republic of the Congo.

In southern Africa, where HIV is a comparatively recent invader, infection rates and deaths are still peaking in urban areas, mining camps or in villages along the region's major highways. But here in the Lake Victoria region, where the epidemic began in the early 1970s, HIV has become rural.

"And that's the thing about AIDS: it's so dynamic," United Nations AIDS Programme officer George Tembo said. Tembo heads up United Nations epidemic operations in Harare, Zimbabwe, but the Zambian physician has worked in Kenya, Uganda and Tanzania, as well.

"The point is that over time in Africa it's easier to deliver services in the urban areas, and then you just pray to God that things trickle down to the rural areas," Tembo explained. Throwing his hands in the air, Tembo added, "We woke up one morning and found that the 2 percent HIV rate in rural areas was now 10 percent."

And that, Tembo said sadly, changes everything.

Traditionally, African village culture has faced famines, war, drought and disease with a resilient, ancient structure based on familial clans. If any clan member was suffering, the whole clan took on the burdens, raising orphans, settling disputes, deciding the terms of inheritances and arranging marriages. In this way, Africa has survived history's great tragedies -including the slave trade.

But in Kagera District, across Lake Victoria in Tanzania, the clan structures have met their match, and in some cases have collapsed, leaving lawlessness and despair. Unheard-of social behaviors are now the norm among the Buhaya-indeed, all across Africa where villagers are struggling with AIDS.

Two people, exhausted after a day's walk across central Kagera, approached the gate of a Lutheran facility outside the village of Ntoma. It was sunset and the barefoot pair-a teenage girl and an adult man-were happy to reach their destination but were also ashamed. Ridia Mutondwe, a compact, strong woman, greeted them and examined the source of their shame.

It is a 6-week-old, severely malnourished baby, hanging in a cloth from the teenager's back. Although the infant tried to cry, no sound emanated. In soft voices the pair explained that neither the ailing mother nor the deceased father's clan could afford to care for the child.

Mutondwe took the baby, adding the tiny girl to the 25 other orphans under her care-every one of them less than 24 months old. After the age of two, Mutondwe explained, the child's clan must find a way to care for him, either through absorbing the toddler into a village household or putting him up for formal adoption outside the clan.

Adoption and child abandonment-these things are new to the Buhaya people.

Inside the orphanage, row upon row of babies sat on potty trainers, lay upon blankets or reached out hungrily for love. Each must be scrubbed, their diapers changed and washed, their bellies fed. Hundreds of hand-washed diapers flapped on a clothes line. And the babies are oddly silent, until given a moment of affection-at the end of which they howled for more.

"It's very hard," Mutondwe said, fighting back tears. "Every day, you give your love. We look after 25 children. There are 15 of us, but salary is not coming. When the relatives come they cry and wail. They are thinking of the dead and thinking of the baby. Every time we pray to God, 'Help me! What can I do? How can I keep this child healthy?'" Mutondwe exclaimed.

When Bishanga Ndamwesiga was a little boy in the 1950s both of his parents died, and he was one of the only orphans in the Ntoma Lutheran facility. He grew up under the guiding hand of a German missionary, who generously bought Ndamwesiga a kibanja. In rural Kagera the kibanja is the most essential element of identity, as it contains the garden from which the family's food is derived, the land upon which the family dead are buried and a house in which the family dwells. Traditionally orphans didn't have kibanjas, as the death of their parents meant the clan decided the fate of the land, usually passing it to the deceased father's parents.

Today Ndamwesiga's kibanja has become a place of great sadness. At 40, he is dying of AIDS. As is his 25-year-old wife, Lavina, and their toddler, Lila. The kibanja had a seedy look to it, since the family is too ill to weed. The trio had just returned from a day's walk to and from the hospital-which was so bereft of supplies that they left empty-handed.

"We are paying for medicine," Ndamwesiga groaned. "But we have a huge debt. I don't know if we will ever repay that debt."

Completing the circle of orphans, Ndamwesiga recently accepted into his household the child of two clan members who died of AIDS. Now, as his family faces death, and Lila is afire with fever, all of them are, Lavina said, "hungry, all of the time. We don't have enough food. We are dependent on the rest of the village."

The damage to culture and traditional social fabric of rural Africa is irreversible, village elders said. Even if HIV disappeared tomorrow, rural Africa would take generations to recover.

"The culture will die," Semanda, the Buganda elder in Kibumba, Uganda, said. "I am alone. There is no one to pass on the culture. Now we have only youths hanging around. They never ask me about Baganda [the people], about the village. The culture is dead."

Many of Kagera's orphaned youths, landless and hungry, have made their ways to Bukoba, where they hustle to earn a living. Few have had adequate educations, as nobody in the plague-infected villages could pay their school fees. Downtown Bukoba, once a business nexus, now has a rough and tumble air. Female prostitutes are as ubiquitous as flies. Young men stand idly listening to music or race about offering services for unskilled jobs: changing tires, washing windows, hauling goods. There are very few middle-aged people.

French volunteer Jocelyne Hulera-Girard of Doctors of the World has worked in Bukoba since 1992 and said that a third of the younger adults who now come to her clinic for HIV tests are already infected. That is despite the roaring business in condoms. In the first five months of this year, the group sold 2.3 million condoms, about 400 per resident.

In deeper rural areas, of course, condoms are hard to find.

In Kansensero the third generation is coming of age. The teens linger about Suzanne Lamnia's tiny pharmacy shack, hoping to talk her out of some condoms.

"If the fish is there we can sell 20 packets [each, of three condoms] a day. If fish are low we sell only five packets. If they don't have some they come and say, 'Give condoms to me for free.' If they are my friends, I give them."

If not, Lamnia shrugs, the boys simply have sex without the protective latex sheaths, guaranteeing that this ravaged town, and the villages of Rakai, will experience a fourth generation of the AIDS epidemic.

And therein lies the most sobering lesson of Kansensero: despite staggering levels of sustained death for some 30 years, lethal risks are still taken every day.

"That's a big challenge," admitted Dr. John Rwomushona of the Uganda AIDS Commission. "That area is the most advanced in accepting condoms." But he rolled his eyes to indicate that sex is sex, and boys will be boys.

"You cannot stop the world going around just because there is AIDS."

As the World AIDS Conference begins Sunday, Newsday examines the epidemic's impact on Africa.

Today: Kansensero, Uganda, Where the Epidemic Took Off.

Tomorrow: How AIDS Targets Women.

Sunday: Chaos of War Spreads Plague.

Monday: Dangers From a Beleaguered Health-Care System.

Tuesday in Discovery: Some Successes in Ugandan Cities.

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