Disease Spread Faster Than the Word

Disease Spread Faster Than the Word


Washington Post, July 7, 2000


By Karl Vick


Last of three articles


MASOGO, Kenya Andrecus Miruka was a son of the lake. Born in his father's house not 20 miles from Lake Victoria, he spent the years before the plague aboard a steamship, ferrying freight across the heart of Africa and passengers from Kenya to Tanzania to Uganda and back. There were women among the men, but if at times the decks of the MV Victoria thrummed with more than the power of diesel, it still meant life.


By the time the ship's pilot retired to the town of Masogo in 1992, the virus was already there. But Miruka, who relishes his role of protector--his black cane holds a concealed saber--saw no threat. It was a routine matter when a cousin named Hezron fell ill, his body erupting with boils and diarrhea. Miruka paid an elder of his tribe, the Luo, to conduct a traditional diagnosis involving thrown shells.


When the "Luo X-ray" came up blank, Hezron was carried to the provincial hospital. The doctors diagnosed one thing but told the family another--"typhoid," they said--before sending Hezron home to die. In 1997, when his widow fell ill, the real diagnosis was finally shared: AIDS.


It was a word Miruka had first heard in 1990. But only now, most of a decade later, could he bind it to the suffering he had been seeing in the huts around his birthplace every year since. And with understanding, there was hope for change.


"For me, I learned about it and immediately set about mobilizing the community," said Miruka, 63. "I didn't keep quiet about that message."


In wealthier parts of the world, information is an industry, a commodity available with such speed and abundance that the word defines the age. But in sub-Saharan Africa, where 71 percent of the world's HIV-infected population lives and which has contributed 61 percent of the lives sacrificed to AIDS, information provides more than context for the disease. In places without money or medicine to fight back--almost all of Africa--it is the whole story.


In Masogo, information that might save lives came to local leaders almost 20 years into the epidemic. From the town's dilapidated health center, useful knowledge about AIDS took four more years to travel three miles down a gravel road worn smooth on the shoulder by the constant traffic of bicycle taxis.


But by then, an estimated 30 percent of the local population had HIV, the virus that causes AIDS. The most recent U.N. statistics predict that, across Kenya, half of the girls who turn 15 this year will be infected with the virus during their lifetimes.

Here among the Luo, the second largest of Kenya's tribes, that projection reaches 70 percent.


How those most at risk for AIDS were left in the dark for so long is not a question that preoccupies the people here. They say without apparent resentment that they are accustomed to being overlooked.


Mourners stand by a grave following the funeral of a suspected AIDS victim. An African

funeral traditionally takes place on Saturdays, but so many were dying of AIDS by the late 1990's that communities were forced to bury every day of the week. Malcolm Linton - Liason


But the nature of their isolation is crucial to understanding how Africa has been left to die alone. When the history is written of what the people on the eastern shore of Lake Victoria long knew only as maduong, or "the big disease," the chapter on outside intervention--from the Kenyan government, from Western countries that had arrested the disease at home--will be remarkably short.


In the neglected countryside where the vast majority of Africans reside, the virus encountered nothing so much as opportunity.

It fell to local communities to conjure a way to confront an enemy that was hard to identify, and even then could hide in a thicket of fear and the most intimate aspects of human behavior.


"We were the first ones," Miruka declared of local elders' efforts to raise the belated alarm. "We were the pioneers."


Armed with the information that might save his neighbors' lives, Miruka repeated it wherever people gathered: storefronts, schoolyards, shade trees. But by then, the best place to spread the word was funerals.


Remote From the Truth


The main street of Masogo is like a movie set: a line of shops, and nothing behind. Communities in Africa are not towns but strolls. One finds a cluster of huts beside a field of maize bordering a meadow that gives onto four more huts, all linked by looping footpaths, the webbing that binds the continent.


One day last month, Domtila Awino, wife No. 3 in Miruka's polygamous household, strode purposefully down the path from her house, across the Nyando River bridge and above the children bobbing naked in the brown water. Twenty minutes later she was seated on a wooden stool beside a man who was barely alive. Joseph Oloo, 38, had been ill since December. Both of his wives and three of their five children are already dead. "This lady," he said in a breathy voice, "is the only one who comes."


It's her job, Awino said. Last November she was trained as a "community health worker," sitting for a week in hotel conference rooms, learning the basics about the disease that killed her brother. The training was funded by the British government, through an aid agency called Futures Group International, in partnership with Kenya's Ministry of Health. The ministry maintains clinics throughout the nation of 30 million. It also has programs devoted to AIDS. But by all accounts, the two have not combined to much effect.


"I blame--because I'm the government--myself," said Jack Okeyo, a nurse at the Masogo health center. Others look up the line to longtime President Daniel arap Moi, who until recently paid the epidemic only the passing mention that was the norm among African leaders. Only since October, when Moi declared AIDS a "national disaster," has his government begun to act with anything resembling urgency, health workers and officials say.


"When you have a government that's reluctant to say we have AIDS, you definitely have a late start," said Richard Odindo, who coordinates training for Futures.


Left to their own devices, people applied the knowledge they had. Among the Luo, there was a word for persistent diarrhea, rashes and weight loss. "Chira" was illness brought on by breaking the norms that have regulated community life for centuries. A wife beating her husband with a cooking stick invited chira. Likewise a boy who, older than 15, entered his mother's bedroom.


But chira could be cured. Between 1988 and 1993, Helida Owiti was summoned 15 times to the bedsides of people diagnosed with chira. The wizened grandmother is one of Masogo's traditional healers, and she knew what to do: Pour a bit of one herb into a calabash, mix it with a second herb, have the patient drink it.


"We were not succeeding," Owiti said. "People kept dying."


She learned why in 1993, when towns and cities suddenly featured billboards bidding, "Let's Talk," the slogan for a new condom called Trust. It was soon on sale almost everywhere at a mere 10 shillings (now about 7 cents) for a packet of three, a price heavily subsidized by Western donors. On main roads, other billboards advised in the local language that "AIDS is not

Chira. AIDS is real."


Health worker Alfred Abande tests Teresa Ogwe for HIV at the Masogo Health

Centre. Malcolm Linton - Liason


But the message went only so far. In Masogo, it went only as far as people like Owiti, who lived in the town proper. She was

visited in person by a nurse from the local health center. The nurse explained the symptoms of AIDS, the mode of transmission

and the terrible prognosis. After listening to the presentation, the old woman put away her herbs.


"We just waited for people to die," she said.


Andrecus Miruka, living in retirement not three miles away, would not get the same information for more than four years.

Logistics was one reason: The Ministry of Health--which, like health authorities across Africa, relies almost entirely on foreign

aid for capital purchases--had equipped Masogo's health center with neither a vehicle nor anyone assigned to roam the farms

where almost everyone lived.


The other reason would be whispered by Owiti, the traditional healer, peering from beneath a wrinkled brow with a look of titillated embarrassment: "I didn't want to mention sex," she said.


Almost no one does in rural Africa. Traditional societies were generally conservative even before missionaries arrived a century ago. Some AIDS experts complain that Christianity added a layer of shame to sex that made frank discussion that much more difficult.


"It's not that people stopped having sex, but they stopped talking about it," said Elizabeth Pisani, a medical demographer and consultant in Nairobi.


Certainly Miruka's eldest son, Bernard Otieno, held his peace when he returned from Nairobi. During five years in the capital, he had watched the epidemic emerge before him. During visits to the city's largest hospital, he heard as early as 1991 of an isolation ward. At the yarn factory where he worked, he saw a colleague who was considered a ladies' man grow thin and die a year later.


"That's when I realized that what I had been told at Kenyatta National Hospital was true," Otieno said. He feared for himself only until the risk factors were explained by a shop steward, in a welfare assembly called at the factory.


"The advantage of working in Nairobi was you get information quite fast," he said, "while in rural areas it takes quite some time for information to trickle down."


Yet when Miruka's son returned with his wife in 1993 to the family compound here, he kept what he had learned to himself. "It was difficult to tell if other people knew, because people did not want to talk about it," Otieno said.


Some of the reluctance was a matter of private fears kept private. Much, undoubtedly, was denial, which found a ready haven

in chira, even though chira had never before been regarded as fatal.


But then what little was known about AIDS hardly invited association. Advertising campaigns targeted prostitutes and the men who used them. Ambrose Oungdha, 64, was apparently infected by a wife 30 years his junior, who died in 1998. The only man in Masogo known to have made his condition public, he said he is shunned by neighbors who answer his request for help with a question of their own: "Did we tell you to go out and get that disease?"


'We Bury Every Day'


In the silence, infections soared. No one knows where AIDS began, but researchers have traced the spread of the epidemic from Congo, the remote heart of Africa, eastward across the Great Lakes of Kivu, Tanganyika, Albert and Victoria.


In Kenya, the virus showed up first and most virulently on Victoria's eastern shore, where the Luo settled hundreds of years ago after traveling up the Nile from Sudan. Some of the customs that came with them would help AIDS along: Luo men are uncircumcised, a condition that in poor countries parallels increased risk of all sexually transmitted diseases. (In West Africa, where circumcision is far more common, there is a markedly lower AIDS rate.) The tribe also requires that a widow be wed to

a relative of her late husband--a caretaking custom common across Africa, but practiced with particular strictness by the Luo.


The virus also created its own opportunities. Lake fishermen had always looked for female company after dragging their long, narrow boats ashore each morning. But only in recent years, after AIDS created widows with no other means of support, have women come down to the beach in numbers, trading sex for a portion of the catch.


"They call it 'extending the boat,' " said Jane Uwuor, a merchant in Usenge Beach.


By 1993, 20 percent of the residents of the area's large port city, Kisumu, tested positive for HIV. By 1998, the rate had galloped to 35 percent. Although rates varied widely, the same acceleration was seen across much of Africa, where 24.5 million people are estimated to carry the virus. In most places, because the disease can incubate in the body for more than 10 years, communities were slow to recognize how deeply it had settled in their midst.


"People don't believe anybody who hasn't got full-blown AIDS is infected," said Eric Otieng, a peer counselor.


The Luo saw the proof of the connection before most. So many in the tribe were infected in the early '90s that the approach of the millennium brought the reality home. The death toll of AIDS in Africa--5,500 a day, 2 million a year--became a family affair. While Andrecus Miruka's third wife watched her brother die, his second, Mary Anyango, lost two brothers, their wives, and four cousins.


And although the deaths were private, the burials were not. An African funeral is a major public occasion, a ritual of eulogy, burial, feasting and music that takes an entire day. Traditionally, that day is Saturday. But by the late '90s, so many were dying that "we bury every day of week," said Elijah Owaga, a Masogo minister.


People here say it was the explosion of funerals in the late 1990s that finally pushed AIDS into the open. As it happened, the first effective information campaign arrived in Masogo around the same time. With the British aid funds and a gifted local health worker named Alfred Abande, the Futures Group set about offering training on AIDS and other sexually transmitted diseases to a legion of community health workers.


The health workers, almost entirely women, were mostly midwives and traditional healers. They took what they learned into the homes around them--each assuming responsibility for 10 neighbors under the ambitious but geographically limited Futures plan. The agency even pays a stipend, though the women are urged to regard the $13 a month as temporary, and to generate income from chicken farms or other small trade that might sustain the program after the outside donor departs.


There are other compensations. The health worker positions carry a status that the women reinforced by sewing themselves uniforms of forest green. And to cement local support, "opinion leaders" were designated among the elders who retain significant authority even in a changing Africa. Miruka, named head of the Masogo panel, beams when he is called "chairman."


But if basic information on AIDS was, at long last, arriving in at least a few patches of western Kenya, there remained the question of what people would do with it. Infectious disease experts note with distress that the countries in Africa whose infection rates are among the highest--Botswana, Zimbabwe, South Africa--also boast the continent's best communication systems.


"The biggest gap is not in information," said Pisani, the medical demographer. "The biggest gap is turning that information into safer practice."


A little bit of knowledge, moreover, can be a dangerous thing. Along Kisumu's Beer Belt, a string of bars where commercial sex workers charge the equivalent of $2 for intercourse, health workers pressing the bar girls about condom use were stunned recently to hear this reply: Having heard that AIDS in Africa was a "heterosexual disease," the prostitutes had figured they could outfox the virus. They were offering customers unprotected anal sex--an extremely high-risk practice that spread the disease among gay men 20 years ago.


But there was also a hopeful precedent for changing behavior taking shape next door in Uganda. Ravaged by the disease in the early 1990s, the country was one of the first to launch an aggressive public education and prevention campaign. Led by President Yoweri Museveni, the abjectly poor country solicited foreign donors to support the effort. Although millions had perished, by the late '90s Uganda was the first African nation where the rate of new infections had declined. It became a model for the continent.


In Masogo, leaders, at least, appeared to be getting the message. Besides wearing the tall white cap of his office, Owaga, the minister, also worked as a "trainer of trainers," responsible for teaching basic primary health care to other lay health workers in his division, population 66,220. But as recently as two years ago he was still too poorly grounded about AIDS to feel comfortable enough to help a woman deliver a child, out of fear that the contact might infect him.


"I came with much fear," Owaga said. "I had not been so much informed on modes of transmission and infection."


Finally, in September 1998, he spent days learning specifics at a government health seminar. It made all the difference.


"Now I'm eager" to meet AIDS patients, Owaga said. "I even look for them. I don't want my people to suffer. I'm fully trained.

Before, I could be suspicious, even resist. Now I feel like somebody involved. Because of the training."


A Dying Custom


There are other encouraging signs. The condom dispenser at the Masogo health center needs refilling every morning. The message Miruka took to delivering at funerals against wife inheritance appeared to be sinking in: Seven widows in his area have remained unmarried.


And, at least in the town center, the flow of information has reached a point where Jael Achieng, a community health worker, asked an American visitor about antiretroviral drugs, the still-expensive medicines that are extending life indefinitely among

AIDS patients in the West.


"Would you mind sending us those drugs?" she asked. "Because our people are dying so much."


Despite drug companies' promise this year to lower prices on some treatments for AIDS, the life-saving drugs that cost

$11,000 a year in the United States are not likely to slip under the $17 per capita Kenya now budgets each year for health care.


As a practical matter, medical experts are more encouraged by the Kenyan government's decision to allow AIDS awareness to be taught in school. The emphasis must be on children, they say, because after 20 years running almost unchecked in Africa, the virus has a depressingly firm grip on the sexually active adult population.


And as the epidemic reaches ever farther into the countryside, Masogo nurse Jane Nam noted another advantage of concentrating on youth.


"Schools are very near," she said. "It is health centers that are far away."


Ogilo Primary School stands just a couple of hundred yards behind Miruka's compound, a long house made of the same resilient mixture of cattle manure and soil as the homes. In the eight grades taught inside, the government curriculum includes daily religious studies; teachers spend perhaps 20 minutes a year on AIDS.


"We are not teaching it," said Lawrence Onyango, a teacher. Only in the STD unit in science, taught before the oldest (and most sparsely populated) classes, is the virus mentioned. "And maybe the prevention measures," he added.


In his role as an elder, Miruka also comes by to talk to the younger kids outside class. But as a Catholic in a country where bishops have burned condoms in public, he refrains from any mention of prophylactics for fear that it would amount to encouraging sex. (However, "If the school is for it, I'm ready to tell the children," he said.)


The Luo, like many African cultures, traditionally provided sex education of sorts in the home. Even 20 years ago, Miruka's eldest son was called into his grandfather's hut after the old man figured out that he had a girlfriend. "He used to tell me to lead a moral life, a disciplined life," Bernard Otieno said. The chat included a warning about sexually transmitted diseases.


Girls approaching puberty would share sleeping huts with a grandmother. She would tell them how to behave, and perhaps how, if her avid cousins could report from the wedding night sheets that she had been a virgin, her mother would be showered with cooking ash in congratulations.


By the time Domtila Awino was bunking with her "old mama," morals had relaxed enough that a girl might slip out for a few hours. But she had had only one boyfriend before Miruka gave her parents the five cows and 500 shillings that sealed their union.


"That's a dying custom," said Alfred Abande, the health worker, smiling at the sight of two men driving three hump-backed cattle down a lane at dusk. The suit jackets over their arms mean they are on their way to the bride's house, to pay dowry.

"Most couples just run off to the city now."


And by the time they marry, surveys show that they have had perhaps a dozen sexual partners between them.


'The End Days'


"We don't follow customs anymore," declared Moses Omondi, 20, one of six modishly dressed young men who were seated recently in the shade behind Miruka's compound. "We live in the current world."


The men, aged 17 to 32 and free at midday on a workday, each nodded when Omondi said he almost never uses a condom.


"It's very rare," said Eric Owino, 23. The reasons he recites echo those of the male teachers at the Ogilo Primary School. Myths about reliability. Objections from women. ("She says it means you don't trust her.") Most of all, the lack of sensation.


"And then there is this thing in the Bible, too," said Moses Mbeda, 18. "In the Bible they say these are the End Days, and there

will be a disease that has no cure."


"I believe so," said Omondi, to more nods. "The end of the world is about to come."


It's a matter of selecting what you want to believe. If a dying person has not been tested for AIDS, maybe he has chira,

Omondi said: "Because you are married and you did not follow the rules."


Such a possibility--that AIDS is really not killing us--can also ease the way at a funeral, which has proven to be another tradition of Luo life still honored among the young. After the burial and the feast, there's almost always music. It might be Luo

benga, or reggae. But usually it's the Congolese rock that all of Africa seems to love--dance music, endless and hypnotic and almost all hips.


"You talk, you dance, and at the end you end up engaging in sex," Owino said. "You don't have a condom. . . ." He shrugged.

"Sometimes it's very hard to reverse nature."


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