Newsday - December 26, 1988
Laurie Garrett. Newsday Staff Correspondent
The bundled mass was the body of a 32-year-old woman being carried home for burial. She had died of AIDS.
Three years ago, funerals were a once-a-month occurrence in this remote northern Tanzanian outpost, bordered to the east by Lake Victoria and on the north by Uganda. Now there are as many as two funerals a day and villagers have grown so accustomed to seeing AIDS victims carried to the grave that the processions have blended into the landscape.
Nearly one in five of the 1,000 men, women and children who once lived here have died of the virus, local doctors said. No family has been spared and many have buried more than one relative. In the past year and a half, Joseph Kowamele said he has buried five children and five grandchildren, all victims of AIDS.
"It started in January, 1987. Then died first the baby, my granddaughter," he said in a flat, shell-shocked voice. "Then on May 15, 1987, I lost another one. Then in June '87 another died. A daughter. And another daughter gave birth to three children, all died of AIDS. Then this June my other daughter died. That is her grave over there. And my son.
"Now I have only four girls left. I had nine children two years ago, now I have only four."
And the epidemic that has wracked Kanyigo is being replayed to the south and west in villages throughout the Kagera Region, where some 1 million people live.
After five weeks of visiting cities and villages in eastern and southern Africa to study the AIDS epidemic, Newsday has found that:
At least 3 million Africans are infected with HIV-1, the primary AIDS virus, according to the UN's World Health Organization. Most researchers agree that the more than 20,000 AIDS cases officially reported to WHO represent less than 10 percent of actual cases in most areas, and may merely hint at the true scope of the epidemic - which has yet to be accurately measured because of poor records, roads, communications and the lack of adequate equipment to test blood.
In some regions, more than half of all young adults are now infected with HIV-1, which is wiping out the entire young adult population and spreading so quickly, up to three times the rate in the West, that many scientists at the recent Third Annual AIDS in Africa conference in Arusha, Tanzania, said they fear the entire continent soon will be engulfed. A second AIDS virus, HIV-2, is overtaking several West African countries and could, if it proves as lethal as HIV-1, take an unprecedented toll.
Unlike in the industrialized world, where homosexuals and intravenous drug abusers are the primary targets, AIDS in Subsaharan Africa is spread principally by heterosexual intercourse, with men and women equally infected, according to World Health Organization experts. Some of the factors that put heterosexuals in danger in Africa do exist in the United States, but to a much lesser degree.
Efforts to slow the epidemic through public education about AIDS prevention have been largely unsuccessful, and some political leaders continue to hamper the free flow of scientific information.
Few African countries have the economic wherewithal to face the crisis that experts predict lies ahead in the 1990s. Health care resources are already stretched to the limit. For example, the cost of treating 10 Americans with AIDS is larger than the entire annual outlay of Zaire's largest hospital. With all African countries facing major economic woes, cuts are expected at the same time the AIDS epidemic is growing.
With medicine in short supply, AIDS is being fought here with only aspirin and good intentions. Recycled syringes must be used to treat a disease that can be spread by contaminated needles.
Among the areas worst hit on this continent, which is larger and more varied than North America, is Kagera. It is also among the poorest pockets of the continent - and the planet - with its aging or nonexistent infrastructure, a rate of population growth that threatens to outstrip potential food supplies and numerous other epidemic diseases such as malaria, measles, polio and malnutrition.
Bukoba, the capital of the Kagera Region, is a fishing and trading center of 30,000 people beside Lake Victoria. Its central marketplace, surrounded by stores, restaurants, hotels and bars, was until recently the setting for a notorious night life for this confluence of nations.
It also turned out to be a hot spot for AIDS.
Rapid urbanization, war refugees and trade have helped spread AIDS so that it involves Africans of both sexes, aged primarily between 20 and 40. The infection was first reported in the countryside in 1983 when a woman from the village of Lukunya, about three hours by car, got ill after trading sex with an infected Ugandan salesman for a piece of pretty cloth.
That pattern of heterosexual transmission continued. In Bukoba some of the Mhaya women grew relatively wealthy plying their trade as "barmaids." Famed throughout equatorial Africa for their beauty, they moved in circles including distant Nairobi, Mombasa, Dar Es Salaam, Kampala and Kigali.
But it was more than mere notoriety that pushed prostitutes to other markets. Under pressure from irate residents, many of Bukoba's prostitutes were forced to set up shop across Lake Victoria in Mwanza two years ago. A survey completed by researchers from Dar Es Salaam's Muhimbili Medical Center last year found that, "HIV seems to have penetrated considerably into the rural population of the Mwanza region." Last year 4.5 percent of the Mwanza blood donors tested positive for infection with the AIDS virus, researchers found.
ANOTHER team of Tanzanian researchers compared 1986 and 1988 infection rates in the town of Moshi, about 450 miles from Bukoba. Two years ago 23 percent of the prostitutes carried the virus; today three out of every four prostitutes are infected. Among bartenders the infection rate has jumped from 5.4 percent to 21.4 percent. And while just 3 percent of the pregnant women tested positive in 1986, today more than 7 percent are carriers of the virus.
Caroline Akim, a public health research nurse at the Muhimbili center, said she has found alarming evidence that AIDS is taking hold in Dar Es Salaam, about 800 miles southeast of Lake Victoria. In 1986, 29 percent of the city's barmaids were infected with the AIDS virus; a year later the rate had risen to 47.5 percent. "The increase in prevalence among female barworkers," said Akim, "indicates a situation similar to Bukoba in 1985 when the prevalence among barmaids was 36 percent. It is also similar to that seen among prostitutes in other African countries."
While there are AIDS-infected prostitutes in major American cities, female-to-male transmission of the virus is virtually unheard of in the United States - only 33 documented cases among the almost 80,000 reported. And even male-to-female transmission of AIDS has proven to be far less likely than is the case with many other sexually transmitted diseases.
Researchers cannot fully explain the differences between AIDS transmission in Africa and in the United States. They have focused on the underlying state of health of residents, differing sexual practices and the prevalence in Africa of untreated venereal diseases as well as other tropical diseases that weaken the immune system.
But one thing is clear: AIDS in Subsaharan Africa is overwhelmingly a heterosexual epidemic, and strikes males and females in equal proportion.
The bars and clubs of Bukoba became major epicenters for the transmission of the HIV virus, health experts agree. The most prominent of those clubs was the Continental Disco, which boasted a huge dance floor, well-stocked bar, powerful sound system and pulsating, bright red and green lights. Like American singles bars of the '70s, the Continental Disco was the sort of place where young men and women could go seeking one-night sexual liaisons.
Two years ago, looking out at a nearly empty dance floor, the owner's wife, a large woman in her 30s, was hostile to all discussion of AIDS, and repeatedly complained that "hysteria" about the disease was taking away her few remaining customers.
Last spring the woman died of AIDS. And when her husband developed the early symptoms of the disease he committed suicide, according to local physicians.
"Everybody commits suicide as soon as they get sick," said William Rutomesha, who tends bar at the Lake Hotel. "The people all know what AIDS is." They also know the usual symptoms of African AIDS: diarrhea and extremely rapid weight loss, with up to 30 percent of total body weight lost in two months' time, he said. The symptoms are different from the United States because different diseases here take advantage of the weakened immune system.
"I think Bukoba is the safest place to be now," Rutomesha said as he wiped the top of the bar and set up another Konyagi, stiff Tanzanian gin. "Everybody knows about AIDS here, and they are careful. Besides, we scooted all the carriers out of town." He laughed and then brushed his hand over the large potbelly he had grown in recent months, adding, "Of course it is dangerous to be slim here now. People think you have AIDS."
"Look," Rutomesha said. "How many women do you see in this bar?" There were none. "Everybody is very suspicious now of women who go out alone at night. Business is down. And people are scared."
Of course there are still "barmaids" in Bukoba. Prostitution is illegal, but some young women earn a living serving drinks in the town's many bars and entertaining the customers. It's a risky business in a town where government doctors estimate half the young adult population is infected with the virus, and more than 80 percent of the barmaids test positive as carriers of the disease.
MAMA KATETEMELA, an organizer for Chama Cha Mapinduzi, Tanzania's ruling political party, is trying to educate barmaids and bartenders and encourage them to use condoms. Despite her motherly presence, Katetemela has had a lot of difficulty reaching those at greatest risk. "Many young people are afraid to admit they don't know how to use condoms," Katetemela said. "And nobody had even heard of them before this disease began."
Medical Assistant Alexander Byashara agrees. Not yet 30, the paramedic, who works at the government hospital, is in charge of Kagera's war on AIDS.
"It is a problem because we do not have enough condoms," Byashara said. "In fact, most of the time we do not have any. We also do not have any picture books or leaflets that show how to use a condom, and people are very embarrassed to discuss these matters." Out of ignorance, he said, rumors spread; "some people said that white people, the Mzungu, put viruses into the condoms to kill Africans." This rumor and others even more bizarre make the difficulties of AIDS education much greater, Byashara said.
"The people, many of them, have already given up. That is the problem we face," Byashara said. "You see, they say, `If I already have one kilo of the virus, should I try not to get another kilo?' That is an alarming situation. So the people who need to be counseled are many. Even those who are not infected think they are. So they behave in an abnormal way, because they are in Kagera, they think everybody is infected, and they think they will die anyway. It is very, very dangerous. Some people say, `Okay, it's death, like any other. Then no problem, let me continue living my life, what I have left of it, without thinking about it.' "
A survey of 367 Kagera high school students gave Byashara and other health workers a glimpse of how great was their task: None of the 41 percent of the teens who admitted to having had intercourse had ever used a protective condom. Half of the students said they would have sex with someone they suspected was infected with the AIDS virus without using a condom, but 89 percent felt an infected student should be kicked out of school to protect classmates.
It is the government policy in the region not to tell people they are infected with the HIV virus or have AIDS. In some cases the doctors and health workers actually lie, denying infection when they know full well the patient has AIDS.
"We think it is difficult, still, to tell a person he is sick, or is a carrier," Byashara said. "We don't think it will help much. And it might make matters worse. There are some people with different tendencies, they might decide after being informed to do indiscriminate, deliberate spread of the disease. They say, `All right, I was infected by somebody, now I can't die alone. I must take someone with me.' Or they might commit suicide."
In the Kagera Region, stores cannot keep the pesticide Thiodan in stock because it is the poison of choice for those with AIDS, said the region's chairman of the ruling political party. He added there is an expression in Kagera: "AIDS is like giving sugar to children mixed with a little Thiodan; sex is sweet, but it kills."
In the absence of poison, people have turned to other methods to end their lives, most driven by the same two desires: to spare their families and friends the burden of caring for an incontinent invalid, and to die with dignity, Byashara said. The need for professional counselors to help break the news of AIDS to stricken patients is overwhelming.
He drove that point home during a morning visit to Bukoba Government Hospital's Ward 9 - which doctors and nurses privately call "The AIDS Ward." A long, paved pathway, covered by a low tin roof, runs alongside a row of small concrete cells; gray cold rooms, each containing two steel frame beds, a small wooden bed stand, and an unscreened window sometimes adorned with a tattered curtain. The beds on Ward 9 are all full.
In one such room, Lazia Hassan, 23, sat upright, wearing a bright red dress, her hair in small cornrowed braids, wringing her hands as if to rub them clean. She was a tiny woman, weighing 88 pounds. On the next bed another woman was stretched out, a thin cotton kanga pulled tightly around her bone-thin body. Lazia nervously glanced at her dying roommate.
In a high-pitched voice, Lazia launched into a rapid description in Swahili of her illness. "I started with a fever, I have had for almost three years now. My last child died after birth, and ever since then I have had continual fever." She stroked her brow, as if to prove it was overheated, and then clutched her stomach, explaining that she had suffered bouts of diarrhea, vomiting and tuberculosis.
She paused, tears welling, and cried out: "I am worried. I want to go home. I don't want to be on this ward.
"I know I have AIDS," she said, choking on the words. "I must have AIDS because they have put me here. I don't want to stay here any more getting injections. I want to go home and die."
Byashara took a deep breath, turned and said in English: "Do you see the problem we have here? I cannot tell her the truth. I cannot. She will go back to her village and kill herself." So Byashara patiently tried to tell Lazia that she "shouldn't think like that. Nobody told you that you have AIDS. You must stay in the hospital for treatment. You might get better."
He sighed and said in English, "Oh, this is a dilemma."
TO MEET the urgent need for counselors, the Geneva-based World Health Organization recently sponsored a training workshop in Dar Es Salaam to teach AIDS counseling techniques to health professionals, but WHO's Manuel Carballo, who heads the organization's counseling efforts, said Tanzania has no money to pay counselors, therapists or psychologists.
Nor is it likely that the country will be able to increase its health spending anytime soon, according to Tanzanian Minister of Health Aron Chiduo. Tanzania annually spends the per capita equivalent of $1 on all health care, a mere one-third of what the country spent in 1973.
The counseling problem is just the tip of the frustration felt by the medical community.
"You know, we have the mental and intellectual capabilities, but we are always hindered by economic and social problems," said Dr. John Makuka, chief medical officer for Bukoba. "I go to school, I study, I do my work. I could go abroad to learn more about AIDS, the government would allow this. But how am I to do this? I have no foreign exchange, no money. You just rot like a cabbage!" Makuka and his colleagues cannot, for example, afford to attend international AIDS conferences, and must be content to yield the spotlight to foreign collaborators who present research papers based on work done in Bukoba.
Makuka and his colleagues work 12-hour days, six days a week on a monthly salary that buys a single tank of gasoline and one Safari Beer. They are forced to supplement their government income by outside activities such as farming. Four months ago the Bukoba Government Hospital pharmacy had neither antibiotics nor aspirin nor the chief antimalarial drug, chloroquine.
"In terms of AIDS," Makuka said, "the biggest problem is that we lack all preventative materials. Syringes, needles, gloves, blood banks, power to run those blood bank refrigerators, machines for testing the blood, even manpower. These are the problems that are haunting us."
Hospitals are forced to routinely sterilize and reuse plastic syringes, designed for just a single shot. Some are recycled so many times that the needles must be sharpened on a whetstone.
On a typical afternoon at the Bukoba hospital it was too dark to read without a flashlight: all electricity in Bukoba was shut down. Bukoba's chief laboratory technician and coordinator of the region's HIV testing effort, Joseph Nkungu, explained that the hospital is without power more than 25 percent of the time because of rationing, making it impossible to conduct laboratory tests or safely refrigerate blood and vaccines.
Nkungu displayed the one HIV testing device in all of Bukoba: a tiny blood plate machine donated by WHO. "We can screen a maximum of ninety samples a day provided the electricity is there," he said. "It takes three or four hours to get the results, and all the positive samples are sent to Dar Es Salaam for confirmation." Confirmation can take up to two weeks.
Four of the nine largest hospitals in the Kagera Region have a similar piece of testing equipment. At the remaining hospitals and clinics in the region surgery and transfusion remain a risky affair. In rural areas to the south or west of Bukoba about 15 out of every 100 units of blood are likely to contain the AIDS virus, Nkungu said. To the north, in the Kanyigo area, blood transfusion is a virtual death sentence.
Three hours drive on dirt roads from Bukoba is the Muleba district, which claims three hospitals. None of the Muleba hospitals have been submitting their AIDS case information regularly to Bukoba, so Nkungu traveled one rainy late September day to Ndolage Hospital to speak with the medical officer, Dr. Callixte Twagirayezu.
Deaths from AIDS at Ndolage hospital, which has blood-testing equipment, have increased by 10 percent each year since 1983, when it is assumed AIDS first reached the Kagera Region. "In 1983 we had only three AIDS patients," Twagirayezu said. "Then thirty-nine in 1985. Then over 100 the next year. And this year, as of May, we had already seen over 500 patients."
Twagirayezu was quick to add that these numbers "are meaningless, completely meaningless" because most of the villagers now know the symptoms of AIDS, and are aware the hospitals have no cure for the disease, so the majority never come to the hospitals. "It is impossible to know," he said.
When the virus first infiltrated this region the villagers staggered into hospitals such as Ndolage in hopes of a cure. Today they know there is no cure.
If doctors want to get a sense of how big the epidemic has become, they must go to the villages.
After passing the three men pushing the corpse-laden bicycle on the road to Kanyigo, Byashara and Nkungu stopped in front of the lone store that is the civic center of the village, once 1,000 strong. Political Party Secretary Vedesto Mutabihirwa sat at a small wooden desk indoors while children dressed in tattered clothing swarmed outside the single window, craning to hear. Mutabihirwa pointed to the children: "We have 127 orphans in this village - children who lost both their parents to AIDS."
"How many adults have died of AIDS here in the last three years?" he was asked.
"One hundred eighty-two."
"How many children?"
"We don't know."
STUDIES SHOW that the odds of a pregnant woman passing on the virus to her fetus is about 50-50. Physicians say the virus must be passed to the fetus because of the high rate of infection in the villages. But diagnosing AIDS in children is very difficult, Byashara said. "You see the symptoms are just the same as marasmus, starvation. Exactly the same. All we can say is that all the villages are seeing much more marasmus today than ever before, and we suspect the increase is all AIDS. But we do not know for sure."
Village elder Cosmos Bilasho said scientists have sampled blood from some of the villagers and have found a high rate of infection by the HIV virus. But the people don't need to have doctors and scientists tell them who has died of AIDS - they know all too well what the disease looks like, he said. Before AIDS, it was rare for young adults to die in the village. Now, when a woman in her 30s gets diarrhea, loses her hair and wastes away everybody knows, he said, that AIDS was the culprit.
"Every adult has buried at least one adult relative in the past two years," Bilasho said.
Twenty orphans stood among the banana trees, stomachs bulging from malnutrition, faces eerily blank. A 20-year-old man who said his name was Unas explained that only he was still alive to support nine nephews and nieces - born to four of his brothers and sisters who all died of AIDS. The children eat bananas from the trees, and Unas earns some money catching and selling fish from Lake Victoria.
Farther down the road, 12-year-old Halim carried a 9-month-old baby, John, her nephew, now her adopted son. Though still a child herself, she tends two additional nieces, also AIDS orphans.
Next door was the house of Kowamele, 59, surrounded by the graves of his five children and five grandchildren. He said he had finished the equivalent of junior high school, trained as a medical technician, and worked hard all his life, earning enough to live comfortably in retirement.
"But now, I have no money these days. I spent it all nursing my daughters and sons, caring for my children. I even had to take the last remaining sheets from my bed to wrap my daughter in, the one who is buried over there," he said, pointing to a mound in his banana grove, not 40 paces from his front door.
Then he wandered over to the grave and stood atop the red clay mound, looked up and said: "I only hope no more die. Now I have so many grandchildren to care for, and so little. Just these banana trees, you see? Just these. I am so tired."
Behind Kowamele a procession of men walked grimly towards the sound of women keening from a hut. Inside, in the darkness, the singing women were sitting in concentric circles on the dirt floor. At the center was a wooden bed and the body that had been laboriously carried to the village earlier, mounted on the bicycle handlebars.
The husband of the dead woman stood beside the small, round thatched-roof hut watching his friends dig a grave. He wore the traditional multicolored funeral sash tied tightly about his waist, as did his seven children, the eldest aged 7.
"She suddenly was attacked by stomach pain, four months ago," he said, describing his wife's death. "So she went to her birth village, the next village over, to stay with her family. She had no appetite. She wasn't eating anything. We tried to force her to drink tea, eat bread. We really tried to force it on her. But it was no use. At eleven o'clock yesterday morning she collapsed and died."
In this land besieged by AIDS, health workers said that most parents believe that their children's only hope lies in getting them to a safer place, to missionaries, boarding schools or even into the hands of a traveling Mzungu.
The man who had just buried his wife urged his children to step forward and meet the Mzungu reporter. "It is a great deal of work for me to feed them, care for them, and do my work. Why don't you take the children? I give them to you."
NEXT: Zambia, a Case Study
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