Wednesday, Oct. 01, 1997

RESCUE IN SUDAN

By William Dowell

Aviation maps list Duar, a sprawling agglomeration of African huts, as Dwil Keil--the "lone house." In retrospect, the description sounds ominously prophetic. Located in south Sudan's western Upper Nile region, Duar found itself at the epicenter of a deadly epidemic--one of the least publicized to hit Africa in recent decades--that raged through the late 1980s and the 1990s. Of Duar's more than 1,000 original inhabitants, only four were left alive. The epidemic also took the lives of more than 100,000 people in the surrounding region.

The cause of this destruction was kala-azar (scientifically known as visceral leishmaniasis), a deadly disease caused by a parasitic protozoan. The disease is transmitted by the bite of a sand fly that is about one-tenth of an inch long and is ubiquitous in certain woodlands. Once inside the body, the kala-azar protozoan invades and weakens the immune system, causing fever, weight loss, anemia and enlargement of the spleen. If the disease is untreated, a secondary infection, such as pneumonia or malaria, usually brings painful death.

It was only the single-minded and often heroic intervention of the Dutch branch of Medecins Sans Frontieres (Doctors Without Borders) that prevented Sudan's epidemic of kala-azar from turning into a modern-day version of the black death, which ravaged Europe in the Middle Ages. MSF, founded by French doctors in the early 1970s, not only was largely responsible for bringing the epidemic under control but in the process also developed new procedures for treating the disease under extremely harsh conditions.

The driving force behind this effort was an unassuming but iron-willed American woman from Moscow, Idaho, Dr. Jill Seaman, whose previous experience had been providing public-health services to Yup'ik Eskimos in the Alaskan wilderness. In an eight-year struggle against the disease, Seaman developed a wealth of clinical expertise in treating thousands of kala-azar patients, perhaps more than any other single doctor in history.

The disease Jill Seaman battled is not new. In the 19th century, kala-azar ravaged much of eastern India, where it earned its name--Hindi for "black sickness." In 1900 a British physician, Dr. William Boog Leishman, developed a stain to detect the parasite with a microscope, and Dr. Charles Donovan demonstrated that specimens could be extracted from the spleen. In their honor, the deadly parasite is called Leishmania donovani. Variants of kala-azar are found in southern Europe and South America. A complex treatment involving daily injections of a potentially toxic, antimony-based compound (as in the drug Pentostam) has been available for a half-century.

Although the epidemic in Sudan involved a known disease, it was complicated by the fact that for a long time no one knew the outbreak was occurring. The western Upper Nile is one of the world's most remote areas. It has almost no roads, and the Nuer ethnic group that populates it is extremely isolated. To make matters worse, the Islamic fundamentalist-influenced government in Khartoum was engaged in a civil war with the people of the south, where Christianity and traditional African religions prevail. Displacement caused by the war and famines had further weakened the population, and the government showed no interest in stopping a disease that might prove more effective than armed troops in quelling rebellious groups.

About the time the epidemic was beginning to spread, Khartoum banned relief flights into the south, and most international organizations, including the U.N., stayed out. Medecins Sans Frontieres refused to go along. In the summer of 1988, with a team already in Khartoum, MSF clandestinely sent a second one into the south. The team soon began to hear reports of a strange new "killing disease," which its doctors in Khartoum believed to be kala-azar.

By then Seaman was attending classes at the London School of Hygiene and Tropical Medicine. Four years earlier, she had taken a break from her job in Alaska to work with Ethiopian refugees at a camp in Sudan but came to realize that she needed more training in tropical medicine. When MSF was scouting at the school for a doctor to take on kala-azar in Sudan, she signed up immediately.

Before MSF hired her, there had been a debate within the organization about whether a kala-azar epidemic of such massive size could be handled with no hospitals in the area. "We were going to be dealing with thousands of patients at a time, and we didn't know if it would be possible to do this out in the open and under a tree," says Johan Hesselink, who headed MSF-Holland's southern Sudan operations during that period.

When she finally reached Sudan, even Seaman was not sure what she had signed on for. "My legs swelled up to twice their size with mosquito bites," she says, "and I was ready to cut my one-year contract short by 11 months." But she was clearly captivated by the place and stunned by the enormity of the human catastrophe around the town of Duar, the center of the epidemic. "If you witness a tragedy like that, how can you not be moved?" she explains. "Where else in the world could 50% of a population die without anyone knowing?"

The first step was to find out exactly what the disease was doing. The team had set up operations in a village called Ler, which was several days' walk from Duar. Seaman and a handful of Nuer staff members began to scout on foot toward Duar. What they found was chilling. In some villages, cows wandered unattended; the entire human population had died. Many of the survivors looked like walking skeletons. Sick children carried starving babies after their parents had died on the road. The level of infection in blood tests from villagers in the region was so high that one lab questioned its own interpretation of the readings.

With the infection rate increasing, Seaman asked for an entomologist to pin down the vector, or carrier, of the disease and its habitat. MSF sent Canadian Judith Schorscher from her base in Paris. She spent six months using fans to suck insects into traps, where they could be dissected and analyzed.

It soon became apparent that the carrier was the female Phlebotomus orientalis sand fly, which passes the deadly protozoan to humans in an unusual manner (see box). The tiny insect, which cannot fly very high or far, inhabits the vast, red acacia forests, where it bites its victims in order to get protein-rich blood to develop its eggs. When female sand flies bit people driven by war or famine into the forests from areas where kala-azar was already endemic, the flies picked up the disease themselves, ready to be passed on.

Armed with the results of these early surveys, Seaman was determined to set up central operations in Duar. Hesselink, as MSF's country manager, disapproved. He claimed he would never be able to get a plane in to evacuate the staff if local trouble broke out between Sudan's warring factions. Seaman went over Hesselink's head, appealing to MSF's managers in Holland. Hesselink was furious, but he eventually admitted that setting up camp in Duar was sensible. Still he warned Seaman that if she ran into trouble, she might have to walk out on foot.

The flights into Duar were often spaced as much as six weeks apart, and cargo on the planes was so limited that although there were food shortages in the area, the staff frequently had to decide between food and medicine. "We saw patients' relatives losing weight because they were giving their food to sick family members," says Sjoukje De Wit, a Dutch nurse who became Seaman's sidekick. The doctors decided that they could eat less as long as the Nuer were starving.

There was no shortage of causes for emotional stress. The Ler vicinity was bombed twice by government forces, once on Christmas Day in 1989 while Seaman was still there and once after she had moved to Duar. She got news of the second bombing by radio from a pilot evacuating all but two expatriates from Ler. Then the radio went dead. "You felt kind of isolated," she says. Khartoum continued bombing civilian targets in rebel territory in the south in 1990.

The rebel forces were not much better. In November 1991, they overran Ler, and Seaman watched as rebel troops moved through Duar on their way to battle. "You saw near naked men running past with guns and artillery," she says. "We could hear gunfire in the distance." By then the team had 1,400 patients in Duar and 600 more in Ler. MSF decided to evacuate Duar. As the plane was preparing to take off, Seaman was still writing instructions for the Nuer staff to run the hospital alone. She expected bitterness at the desertion and even physical attack. Instead the Nuer sacrificed a cow to thank her for her work. They named Seaman Chotnyang, or "brown cow without horns," because they knew she hated violence. "When the Nuer give you the name of a cow," says Hesselink, "you know that you have done something right and that they think you are pretty exceptional." The departing team left behind an emergency radio. For three months, Francis Galiek, a male Nuer nurse who had lost his family to kala-azar, ran the operation.

Seaman and her colleagues later returned, but subsequent battles for control of the region made more plane evacuations necessary. At Duar, while she tried to cope with simultaneous outbreaks of meningitis and measles, at least 900 patients were also suffering from kala-azar. Each time she had to leave, she could not exorcise the images. "I kept seeing thousands of people standing at my tent, saying, "I am dying, Jill. What do I do?'"

While Seaman and De Wit were spending two weeks climbing Mount Kilimanjaro in 1994, the long period of strain suddenly caught up with Seaman: she realized she could no longer sleep in a room alone. She took a four-month leave in the U.S. but afterward returned to Africa. Her biggest problem was a sense of helplessness. "I remember someone saying, 'Don't worry. Jill is here,'" she says. "But I still couldn't do anything." In fact, she was trying to do just about everything. "She didn't just treat patients," says Marilyn McHarg, the current country manager for MSF-Holland in Nairobi. "She designed the protocols and the system for the treatment."

Kala-azar itself was not the only problem. One day a patient who had gone mad threw a spear through another man's chest. Seaman operated and saved the man's life. Then she and De Wit operated on a man so riddled with tropical ulcers that his bones were exposed.

There were other crises. Hesselink had just taken off at sunset from the small airstrip at Nimne, not far from Duar, when he got a radio call from Seaman asking him to return and pick up a woman having complications in childbirth. "I told her it was crazy. It was too late. We would crash," says Hesselink. "She made me do it anyway." After picking up the woman and Seaman in Nimne, Hesselink flew in the dark to Ler, where there was better equipment. As the plane approached the field, the Nuer lit fires along the runway. After being treated, the woman gave birth to twins. When Hesselink flew back to Nimne with the newborns, he was greeted by cheering crowds.

By late 1995, it looked as though the epidemic in southern Sudan was beginning to wane. Seaman and the MSF staff had treated about 19,000 patients, principally by administering daily injections of Pentostam. Keeping track of up to 1,400 patients at a time, most of whom were unable to read, required the creation of a massive card-filing system and the training of a competent local staff. Family members were taught to fill syringes to lines marked with tape and then to administer the doses themselves. "Jill Seaman has treated more cases of kala-azar than anyone else in the world," says Dr. Robert Davidson, senior lecturer in infectious and tropical diseases at the Imperial College of Science, Technology and Medicine in London. "She has personally dealt with more than 10,000 cases."

Once treated, a patient is likely to remain immune to the disease. But the price of stopping the epidemic, which amounted to more than $1 million a year poured in by MSF-Holland, has been high in human terms as well. Of 70 Nuer and Dinka nurses trained by Seaman and the other MSF doctors, more than 75% have come down with kala-azar themselves. Five lost children to the disease.

With the crisis beginning to come under control, relief agencies headquartered in Nairobi began to rethink their role in Sudan, favoring a hands-off approach aimed at getting the Sudanese to develop their own medical capabilities. Seaman was criticized in some quarters for being too hands-on, for doing too much. Hesselink says Seaman faced a mini-revolt in 1995-96 when some colleagues insisted that she see patients only during normal working hours or risk being sent home on the next plane. An MSF bureaucrat who replaced Hesselink as MSF's country director briefly banished Seaman to languish in Nairobi, before the bureaucrat was herself recalled to Holland. McHarg, Seaman's current boss, appreciates her special talents but also sees the need to go beyond emergency medicine. "If we pull out of Sudan tomorrow," she says, "we'd like to know that we are leaving something that lasts."

The Nuer are clear on where they stand in the hands-on vs. hands-off debate. Chief Tongwar, one of the area's most respected head chiefs, told a recent council meeting, "Jill is like me. What I think, she knows." Then he added softly, "If you did not come here, Jill, everyone would have died. We have named many of our daughters Jill. Now we will also name our sons Jill." After Chief Tongwar finished speaking, Chief Elizabeth, representing the women in the village of Nhiadhiu, stood up. "No other doctor came to us," she said. "Only you."

As long as she is allowed to continue, Seaman, 45, shows no sign of taking a step back in confronting human misery. "We all make choices," she says. "Sometimes you can decide to do one thing, and to do that one thing really well." McHarg has assigned her, along with De Wit and another doctor, to a flying satellite team that roams from village to village treating kala-azar and tuberculosis. TB is a special problem today because kala-azar has so weakened the Nuer's immune system that any subsequent infection is often fatal. In August, McHarg dispatched Seaman to Ethiopia to survey a new outbreak of kala-azar. Seaman is also working on a pilot project to try out a drug for kala-azar that will cost a tenth the price of Pentostam.

But it is really the work with patients that captures her. This summer she set up a camp in Manajang, Sudan, where the airstrip was so overgrown that the pilot was terrified of landing. In control once again, she seemed back in her element. There was no one to hold her back from healing the sick. On a recent night at around 10, a loud, flailing sound erupted outside Seaman's tent. A mother was desperately trying to revive her eight-year-old son, who was in a critical stage of cerebral malaria. As he slipped in and out of consciousness, his mother frantically tried to keep him breathing. When Seaman bent down to get closer, a swarm of mosquitoes descended on her ankles and arms in an African feeding frenzy. Ignoring her own discomfort, she prepared an IV, but the boy's blood pressure was so low and his arms so thin that she could not find a vein.

With a Nuer nurse holding the boy tightly, Seaman jabbed the IV into his arm and then, dissatisfied, pulled it out. "It's not right," she explained. The boy writhed in agony. Calmly, she inserted the needle four or five times more before she was finally sure that she had it right. At 2 a.m. she ducked back into the boy's hut to give him more medicine. In the morning, astonishingly, he was alive and smiling. The Nuer mother beamed at Seaman, and then she was gone. Seaman sat down at the camp table outside her tent, poured herself a cup of tea and began preparing for her morning patients.

The next big epidemic in Sudan will probably be sleeping sickness. The African trypanosome parasite that causes it is a distant cousin of the kala-azar protozoan. Infection rates in some villages in Western Equatoria, just south of the western Upper Nile, are already running at 20%. Experts question whether the disease can be treated without hospitalization--an option that, because of the large numbers infected, is out of the question. It is the kind of impossible field-medical problem that is tailor-made for Jill Seaman, and she has already indicated that she would like to get involved--if the decision makers in Nairobi ask her.

As for the Duar area, Johan Hesselink says, "We used to fly over here, and there were no tukuls [huts]. Now there are tukuls everywhere. These people have come back because they see a future. That is what life is about." That is no small achievement for an unassuming American girl from Moscow, Idaho.