In the beginning it was called “Juliana's disease.”
It was first noticed in the village of Lukunya, on the Ugandan border sometime in early 1983.
A handsome Ugandan trader had come through selling cloth for women's
kangas
patterned with the name Juliana. A village girl with no money
traded the stranger sex for a
kanga
, as did several other women who coveted the beautiful Juliana cloth.
Some months later the first girl became sick; she had no appetite, could hold down no food, and had constant diarrhea, which filled her with shame. Nothing more mortified the Mhaya people of northern Tanzania than being babylike, unable to control the expulsion of their own bodily wastes. In a few weeks she wasted away, grew weak, and had to be carried everywhere. Before she died, two other women, also adorned in Juliana's cloth, came down with the strange disease.
The people of Lukunya decided that the Ugandan was a witch, and that Juliana's cloth had evil powers. To conquer Juliana's disease, healers toiled to lift the stranger's curse.
The people had reason to be suspicious of Ugandans. They were still smarting from their invasion by Idi Amin's Ugandans in 1978 and Tanzania's war with Uganda in 1979. During that time, thousands of Tanzanian soldiers poured into the villages and bivouacked there for weeks on end. As many as 6,000 Tanzanian soldiers were in villages normally occupied by less than a thousand people.
Knowing how bad the blood had been between the Mhaya of Tanzania and the Ganda of Uganda, the people were not surprised when the traditional healers were unable to lift the powerful curse and the death toll continued to rise.
Within a year the curse had spread to the neighboring villages of Kanyigo, Bukwali, Kashenye, and Bunazi. In the village clinics the medical assistants at first dismissed the illnesses as just retribution for having consorted with “unfair dealers from across the border.” By 1984, however, Juliana's disease cases were appearing at Dr. Jayo Kidenya's hospital in the Kagera District's capital, Bukoba, and the Ndolage Missionary Hospital on the other side of the district. The Bukoba doctors were convinced the disease was something new. None of their treatments could slow its terrifyingly rapid progress. Kidenya was puzzled because the adults died like children, wasting away as if they were infant measles cases compounded by malnutrition. Some patients had stubborn viral and bacterial infections that could not be treated with Kidenya's small array of antibiotics. Rumors of widespread witchcraft were spreading throughout the Kagera region, and Kidenya felt compelled to solve the Juliana mystery.
He had few resources for medical detective work. The destitute Tanzanian government hospital he ran imposed
unyenyekevu
modesty and lowered the expectations of all who toiled under its tin roof, including Kidenya. Ten years earlier, the soft-spoken, enthusiastic supporter of President Julius Nyerere's Ujamaa program had studied in snowbound Bucharest, thinking a European medical degree would garner a prestigious posting in the capital, at Muhimbili Hospital.
But here he was, forced to augment his meager salary with weekend farming, living by Lake Victoria in an area suffering from the ravages of
the war. Ironically, the roughly 10,000 residents of Bukoba found the Ugandan capital of Kampala easier to reach than far-off Dar es Salaam.
Kidenya and his wife, a nurse, were homesick for their homelands in the far south where the soft consonants of Swahili rolled off the tongue. Uncomfortable in this distant outpost, Kidenya waited anxiously for the weekly steamship from Mwanza to bring his mail and hospital supplies.
All too often, however, it arrived nearly empty, the cargo pilfered by its handlers during the 1,000-mile journey from Dar es Salaam. The often reordered electric generator, the refrigerator for vaccines, the long-overdue supply of sterile syringes, the penicillin and surgical equipment never arrived.
Around February or March 1984, Kidenya and his staff noticed that several of their patients had genital ulcer disease that wouldn't respond to normal treatment.
“This is most strange,” Kidenya said to medical assistant Justhe Tkimalenka, who readily agreed, and confided that he was afraid of the new patients: it wasn't right for people to die from genital ulcers.
Kidenya admitted that he was also frightened.
“These are very dreadful venereal ulcers,” Kidenya later explained to a visitor. “Very deep. Very frightening. We treat these people for chancroid, but they never respond. And they develop long-standing diarrhea and persistent fevers. They all have severe weight lossâthe most severe we have ever seen in this hospital in adults.”
Kidenya, Tkimalenka, and the hospital's stout surgeon, Clint Nyamuryekunge, scoured medical records for clues. A recent graduate of Muhimbili Medical School, Nyamuryekunge was convinced that the puzzle could be solved using the scientific method. As bombastic and aggressive as Kidenya was discreet, Nyamuryekunge argued that all they needed was a good pool of plague patients to compare with a group of normal venereal disease patients.
Kidenya contacted the directors of other hospitals in the Kagera regionâa difficult procedure in an area with no telephone service. He surmised fairly quickly that everyone was seeing cases of strange, lethal venereal diseases, and issued word to bring them to Bukoba.
Shortly, in September 1984, a village paramedic brought nearly two dozen patients to Bukoba in a single day, and Kidenya ordered that blood and stool samples be taken from all. Studies of the samples with microscopes and special stains revealed nothing. The patients all told a similar tale of a young barmaid in their town who gave Juliana's disease to the men, who in turn gave it to their wives.
The three doctors pooled their meager resources and financed a trip to the capital for Nyamuryekunge. Carrying blood samples and all available information on the patients, he traveled southeastward for days by boat, truck, bus, and car, finally reaching Muhimbili Medical School, where his former professors studied the samples, read the reports, and debated the
nature of Juliana's disease. In the end they agreed only on one thing: nobody could find a microorganism that could be causing the illness. That meant it must be something new.
Dr. Fred Solomon Mhalu, the university's chief microbiologist, had led the nation's recent fight against cholera and was charged with training Tanzania's future pathologists. He suggested that Nyamuryekunge go to the medical library. “Something about this Juliana's disease reminds me of things I have read from America,” he said.
The young surgeon found Gottlieb's description of
Pneumocystis carinii
pneumonia cases among Los Angeles men, the CDC's reports on acquired immunodeficiency syndrome in Haiti, the list of symptoms in the
New England Journal of Medicine,
and evidence in
Science
of a new retrovirus discovery in laboratories in the United States and France. He carefully compared the Kagera patients' symptoms and the Muhimbili laboratory findings from their samples with the observations in the American medical journals.
It was a perfect match, except for the types of patients involved: Kagera had no homosexuals, drug users, or hemophiliacs on Factor VIII. Mhalu suggested that Nyamuryekunge focus on the information about Haitian cases.
Bursting with the information, Nyamuryekunge made the long trek back to Bukoba, and briefed Kidenya and Tkimalenka on his discovery.
“And that was the day,” Kidenya later recalled, “that we knew, oh! In the world there is a new disease called AIDS.”
The three doctors then realized that their battle against this new virus was hopeless. Even in medically sophisticated New York City all the patients were dying.
Kidenya later remembered that the news hit him like a death sentence for his people.
“I thought surely this will be the greatest war we have ever fought. Surely many will die. And surely we will be frustrated, unable to help. But also I thought the Americans will find a treatment soon. This will not be forever.”
It was January 1985.
For more than a year, the three of them struggled to convince other Tanzanian physicians that AIDS had come to the country.
“We told them watch out, there is AIDS in Tanzania,” remembered Nyamuryekunge. “But this was causing turmoil. The doctors were refusing to believe us. They were saying, âHow do you know you have AIDS? You don't have a good laboratory! You might be confusing diabetes mellitis! You can't be sure! You are just raising a false alarm.'”
The Bukoba doctors had no way of proving that Juliana's disease was AIDS. The doctors urged the Ministry of Health to get the blood test for AIDS from America so that the debate could be settled.
Following an official request for the CDC's assistance, Nyamuryekunge's samples were shipped to Atlanta, and Jim Curran's team quickly confirmed
that they indeed contained the human immunodeficiency virus. Surprised to discover AIDS in an area as rural and remote as Kagera, Curran immediately dispatched CDC investigator Don Forthal to Tanzania.
Forthal's tour of Bukoba Government Hospital began with outpatient clinics, immunization rooms, maternal/child care centers, and the maternity ward, facilities that were minimal but clean. But when they entered a general patient ward the difficulties Kidenya's team faced daily became obvious. Every spartan steel-framed bed was occupied. Thin mattresses and stained sheets were all the comfort most patients were provided. The smell of soiled sheets filled the air, competing for the senses' attention with the din of groans and conversation, amplified as it reverberated off the stark brick walls. The tattered window screens, intended to protect patients from malarial mosquitoes, flapped in the morning breeze.
“I couldn't believe what I was seeing,” Forthal later said. “In just seven days I saw maybe twenty-four or twenty-five patients, all sick as hell with AIDS. No doubt about that. All in this one little Bukoba hospital. These patients were so much worse off than American AIDS cases. The disease is different over there. They were just wasting away before your eyes; I could see a difference in these people in seven days' time.”
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Kidenya later showed an inquiring American journalist the full range of the Kagera crisis. In the general medicine ward, a woman sat stiffly on one bed, holding a small bundle. She looked well fed, but appeared listless and depressed. Her eyes were vacant. Kidenya approached her saying,
“Jambo, mama. Habari gani?”
He carefully lifted the bundle. The woman neither watched nor resisted as Kidenya dramatically unfolded the tiny wad of cloth to reveal a suddenly screaming, emaciated baby girl. Her eyes seemed enormous and her limbs stuck out like afterthoughts, flailing weakly and aimlessly.
“This,” Kidenya said, “is malnutrition. This child looks to be a year old, but actually is three years old. This mother is from Uganda. For months she and her child starved. Now she has recovered, but for the child it is much harder.
“As you can see,” Kidenya said, “we have many problems here. AIDS is only one.” He paused, and as the mother slowly rewrapped the now silent child, he added thoughtfully, “And in truth I do not knowâperhaps this, too, is AIDS. We cannot test, so we cannot tell. The child is not responding to treatment.”
The visitor was guided to a wing detached from the rest of the hospital: a long, white row of cells, separated from one another like a line of shoe boxes or concrete bunkers.
Joined now by Tkimalenka, Kidenya ushered the visitor into the overpowering stench of one of the cells, where two women lay, one of them on the ground, wrapped in ancient sheets soiled with her own waste. Seeing this, Kidenya and Tkimalenka exchanged words in Swahili and the assistant stepped outside to signal a nurse.
“These two ladies are with HTLV,” Kidenya said, using the term HTLV as code in front of the patients. The word AIDS struck such horror that many would kill themselves, usually by ingesting the pesticide Thiodan, if they heard such a diagnosis. Dozens of Kagera's citizens were rumored to have taken the faster Thiodan route to their deaths, and local stores were unable to keep up with the sudden increase in demand for the poison.
Pointing to a young woman who sat listlessly upon her bed, Kidenya said, “You can see her hair is straight, a bit red, and rare. Surely they are wasted. They look very sad.”
Kidenya asked the young woman her name.
“Noticia,” she replied.
He asked if she would tell her story for the visitor.
“Jambo. Karibou,”
Noticia said, struggling to muster a welcoming smile. Her long response in Swahili was delivered in a quiet, flat monotone, quite uncharacteristic of Tanzanian use of the language. Kidenya listened patiently to her medical history. She was skeletal. Her lips were ulcerated and small sores dotted her skin. Yet it was obvious that Noticia had once been a remarkably striking woman.
As she spoke to Dr. Kidenya, her eyes glazed over; she knew she was going to die. Birds chirped in the background and the hospital cooks could be heard nearby stirring mashed yams in a cauldron over an open fire. Noticia spoke so softly over the noise that Kidenya bent down and put his ear within inches of her mouth.