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1998

A SLEEPING STORM
Discover, August 1998

Winner of the 1999 Pan-American Health Organization Award for International Health Reporting

Sleeping sickness--once thought to be vanquished-- is raging back across Africa. At the center of the epidemic, an American doctor, Mickey Richer, is trying to clear a small patch of good health.

Justin Kalesto doesn't want to wake up. A woman is calling his name, but he turns his head deeper into his pillow. He is 12 years old, and from Mangbangau, a village deep in remote southern Sudan. He wears a tattered pair of blue shorts and a thin necklace of blue beads; on the windowsill above his cot are his sandals and woven basket. Justin's sunken abdomen curves inward like a bowl; his nostrils are clogged with bacteria and dried mucus, and the skin around his closed eyes puffs out, giving him the face of a frog.

Justin has become home for hundreds of thousands of whip-shaped parasites called trypanosomes. They have fed on his blood and made their way into his brain. Generally the human victim of such an invasion sinks into an irritable haze, slips into a coma, and dies. Hence the name of the disease: sleeping sickness.

"Justin, Justin, hello!" The woman calls loudly to him as she moves her fingers along his neck and the back of his head. He opens his eyes, mumbles a little, and then closes them again. "Do you know where you are?" the woman asks in English, and a Sudanese nurse translates. He nods and says, "Tambura," the name of the town where this hospital is located. The woman tries to bend his head, but it's too stiff-his entire back is rigid as well.

"When someone comes in and you can't bend their head," the woman says to the Sudanese men and women standing with her by the cot, "get a doctor immediately." Her name is Mickey Richer. She is a short 53-year-old woman with a gray mop of hair, dressed in a T-shirt and pale blue surgical pants. She prescribes shots of steroids and says, "Okay, Justin, see you later." He offers no response, not even a glance.

Justin came here five days ago. By then his immune system had become so depressed that his nose got infected with opportunistic bacteria. He may also have picked up malaria. "He's got a lot of parasites," says Jon Carsello, a nurse from San Francisco, as he strokes Justin's head. For three days the hospital nurses gave Justin a drug that wiped out a fair number of the parasites. But sometimes this medicine can be as bad as the disease. Now Justin's brain and spine are awash with scraps of dead parasites, and his immune cells have swung from a torpor to a frenzy, attacking the debris and inflaming the surrounding tissue.

Carsello guides the Sudanese staff as they give Justin the steroids. The hope is that by reducing the inflammation, the steroids will take the pressure off Justin's swollen brain. "They will help within 24 hours," Carsello says, away from Justin's bedside, "if he lives that long." When the needle goes into Justin's arm, he whimpers remotely, as if deep in a bad dream.

There are 102 other patients at the Tambura County Hospital being treated today for advanced sleeping sickness. Justin is one of an estimated 9,000 to 12,000 in Tambura County who are sick with the disease-20 percent of the population. And he is only one of perhaps hundreds of thousands who have become infected recently in southern Sudan and its neighbors, the Central African Republic and the Democratic Republic of Congo (formerly Zaire). Once considered a disease fading into oblivion, sleeping sickness is raging again, particularly here. In all of southern Sudan, Richer is running the only program to fight the disease, and she is able to save only a handful of lives.

Richer was already in her forties when she began working in places like Tambura. "I always wanted to do Third World work; that's why I went to medical school," she says. "I thought I'd be a pediatrician for one or two years and then move on. I loved the kids so much I stayed around for 20 years."

She finally left her practice in Denver in 1987 to spend a year in northern Sudan, working in a camp for refugees driven there by recurrent famines. Afterward she went to the prestigious Liverpool School of Tropical Medicine and then returned to Africa with the International Medical Corps, a Los Angelesbased group of doctors and nurses who bring medical care to places wrecked by war and disaster, such as Angola, Bosnia, and Burundi. She spent a year in Somalia, handling diseases she had never even heard of in Denver, such as one called cancrumoris. "The normal bacteria in your mouth take over and eat away your face. So we had people with half-faces. In the tropical-disease textbooks there's that much on it"-Richer squeezes two fingers together and squints-"but in my year in Somalia I must have seen 500 cases of it."

Richer tells this story and others like it matter-of-factly. The things that paralyze other Americans with fear or disgust don't affect her much, or stop her from her work. Every day she gets up before dawn and does calisthenics in her small room; in an hour she's ready to start working at the hospital or to drive over spine-shattering roads to check in at clinics or villages.

When Richer first came to Tambura in 1994, she didn't know she was landing in the middle of an epidemic. Her job was to resurrect the county hospital, abandoned during the ongoing civil war. The war, which has been sputtering for 15 years, has its origins in the geography of colonialism: stretching over nearly a million square miles, Sudan is really two countries. Its northern half constitutes the eastern edge of the Sahara, windblown deserts cut through by the Nile and dominated by Muslim Arabs. A belt of swamps cuts it off from the southern region, which is a mix of savannas, marshes, and forests. Here live dozens of tribes, black Africans who practice either traditional animist religions or Christianity.

The Arab north controls the government. Since Sudan's independence in 1956, it has left southern Sudan undeveloped and tried to impose strict Islamic law on the people. In response, a southern rebel force-the Sudanese People's Liberation Army (sPLA)-has tried since the early 1980s to overthrow the government. Between the famines and the war, hundreds of thousands of people have died. The rebels are now in control of wide expanses of the bush, and the Khartoum government has barely been able to hold on to southern garrison towns. Still, the war goes on.

The battlefront reached Tambura in 1989, and by 1991 the SPLA had won this part of Sudan. Today the battle lines are a two-day drive to the north, and Tambura has what passes for tranquillity; the market is filled with people selling millet beer and antelope meat and hair cream and plastic shoes. Yet it's hardly the town it was. There was once a movie theater in Tambura; a few miles outside town there were cotton plantations and lime orchards. Now they are all abandoned. A narrow dirt track is the only road in the region, and the few vehicles that travel it are all owned by aid groups or the rebels. Throughout the 1980s, British and Belgian doctors ran hospitals in towns a few hours away from Tambura, but now most of them stand empty and decrepit, inhabited only by lizards and wasps.

Richer gradually brought in a skeleton crew of expatriate nurses and doctors to help her rebuild the health care of Tambura County and to train a Sudanese staff that has now reached 100. The project took time: she could buy basic supplies like food and bricks around Tambura, but for anything else drugs, medical equipment, vehicles-she had to depend on a small plane that flew in once a week from Kenya.

But it didn't take Richer long to notice the parasites. First she realized that she was seeing a lot of cases of river blindness, which is caused by a worm that is transmitted by the bite of blackflies. The worms wander from the bite into the surrounding skin of the host and give birth to thousands more wandering worms, which cause agonizing itching as they crawl through their host's skin; they also crawl over the top layer of the eyes, leaving behind scars that eventually blind. Richer surveyed the villages of Tambura and discovered that river blindness was rampant. She set up a program that has treated thousands of people, but it may take years before the disease is halted in Tambura County.

As Richer was battling river blindness, she realized that a far more dangerous parasite was also on the rise. "I saw a few people with sleeping sickness in 1994," she remembers, "and in 1995 I treated 19 patients."

The single-celled trypanosomes that cause sleeping sickness spend their time cycling between humans and tsetse flies. They linger in the gut of the fly, absorbing amino acids and other molecules that the fly gets by biting mammals. After about ten days the trypanosomes move into the fly's salivary glands.

To prepare for their new home, the parasites cloak themselves in a coat made of millions of copies of a single sugary molecule. Our immune cells fashion antibodies that correspond to this molecule's shape, and the antibodies enable the immune system to kill the parasite in huge numbers. But some individual trypanosomes take evasive action. They shut down the genes they use to build their coat and turn on a new set in their place. They can then build a new surface molecule, one similar enough to the old one to do the job but which no longer matches the antibodies. Now invisible, the parasite thrives while the immune system starts a new eradication campaign from scratch. But trypanosomes have hundreds of coat-coding genes that they hold in reserve, and they can easily continue to slip away from the body's attack. As they wear out the immune system, the parasites feed on their host's blood. Months or years can pass before some of them cross the barrier that protects the brain.

Sleeping sickness has had a long history in Africa. One subspecies of the parasite lives amicably in the bloodstream of wild animals such as antelope and eland, but when it gets into a cow it makes the animal waste away and die. As a consequence, raising livestock has been difficult or impossible in much of Africa south of the Sahara. Over 3 million square miles of that land are off limits to cattle, and in places where they are raised, 3 million cows die of the disease each year.

Trypanosomes have infected people for hundreds of thousands of years but probably rarely became epidemic until recently. When, over the past few thousand years, Africans began farming in tsetse fly country, they became easier targets, but they still had ways to fight against the disease. "What they did was avoid places," says Richer. "That's the natural waymove away from the known site of the activity."

European colonization of Africa changed the equation. "Civilization has made it easier for epidemics of these parasitic diseases to survive," says Richer. Africans were forced to work in places that were loaded with tsetse flies, and new colonial borders kept them from moving freely as they used to. Sleeping sickness soon became the biggest health threat in Africa, with epidemics regularly flaring up. In 1906, Colonial Undersecretary Wmston Churchill reported to the British House of Commons that the disease had reduced the population of Uganda from 6.5 million to 2.5 million.

By World War II, with the discovery of antitrypanosome drugs, it seemed that the tide could be reversed. "During the fifties and sixties the number of cases really dropped off," says Anne Moore, a sleeping-sickness expert at the Centers for Disease Control (CDC) in Atlanta. "The World Health Organization conducted a big campaign and it really worked. They were talking about elimination of the disease in the sixties."

When Richer came to Tambura, there hadn't been a major outbreak of sleeping sickness since the late seventies, and at first she simply dealt with cases as they came in. But the number steadily grew: the 19 patients she treated in 1995 became 87 the following year. "And in late 1996," she says, "the health workers in the community came and said, `Hey, there are over 800 people in Ezo with sleeping sickness."' (Ezo is a town 12 5 miles south of Tambura.) "I said, `Dream on,' but I went out there, and sure enough they were all there."

If her observations were any reflection of the region as a whole, sleeping sickness was suddenly spreading quickly. But before she could convince anyone she was facing a genuine epidemic, she had to do a thorough survey. In October 1996 the International Medical Corps asked the Office of Foreign Disaster Assistance at the U.S. Administration for International Development to fund a survey, but in December the government turned the corps down. LMC then turned to CARs, which threw in $20,000-"Not big bucks," says Richer, "just enough to go out and do isolated surveys to see what the prevalence of the disease was."

The survey took ages to set up. Anne Moore of the CDC agreed to help, but obtaining money and visas took time, and it wasn't until May 1997 that she arrived in Tambura. "We went out Monday through Friday," says Richer, "and then Sunday afternoon I was taking Anne to show her the hospital." Driving back to the LMc compound, they crossed Freedom Square, a forlorn soccer field near the airstrip. "And there were troops with guns. They said, `Stop.' They had never said stop to me before, so I stopped."
The SPLA soldiers told Richer that fighting had broken out to the north and that they had to commandeer her Jeep. "I said, `You can't have my vehicle; I need it for my study.' And they said, `We're taking your vehicle,' and I said, `No, you're not.'

"But anyhow," Richer says, "they took the car. So after one week we were on hold again. First we didn't have any money; now we had the money, but we couldn't do the survey."

Richer didn't get back into Tambura until the end of June. By the end of July her fears were confirmed: she and her colleagues had tested 1,360 people; 263 had sleeping sickness. Of the 16 villages they visited, some were relatively healthy, with only a few percent sick, while others, like Ezo, had rates up to 45 percent, among the highest recorded this century. Overall, Richer estimated that in Tambura County, 20 percent of the people were infected. Back in 1988, she calculated, the rate had been no more than .5 percent. Over the course of nine years it had multiplied 40 times. Suddenly Richer had discovered that as many as 12,000 of the people served by her hospital might be dead within two years. In more than a third of the cases, the parasite had already spread to the brain, meaning the victims had less than six months to live. And there was nothing to stop the epidemic from becoming even worse.

Nine months had passed since Richer first caught the scent of the outbreak, but only now did she have the data that would make people outside Sudan take her seriously: "It's hard to make the world understand that suddenly a disease that was once attacking half a percent of the population was now affecting half of some villages. And that, I think, is a major catastrophe."

The village of Madoro is centered on a widening in the road just southeast of Ezo. About 625 people live in Madoro, but their highpeaked thatched huts are scattered beyond the clearing among the reeds and trees. Here a church stands-a long, low thatched roof on poles-along with a oneroom clinic. Today a few hundred people from the village have gathered in the clearing under the tall, dark mango trees. A hunter with a bow over his shoulder is playing a thumb piano; a boy is walking a monkey on a string. The villagers go first to a table where their names are read aloud, and a Sudanese man in an IMC T-shirt writes numbers on their arms in black ink. They then join a long line that leads up to another table, where other men wield little lancets. One of them bunches up extended fingertips and pokes the lancet through the skin, catching the blood in a pipette. He passes the pipette to another man with a white card in front of him. The card has ten circles, and in each circle is a dot of blue: a solution of proteins taken from groundup trypanosomes. The health worker smears the blood onto the circles and sets the card on a little revolving platform. It is powered by theIMCJeep's battery, which sits at his feet. If a villager has been exposed to sleeping sickness, the blood on the card will contain antibodies that can quickly bind to the trypanosome proteins. They turn the smear into a collection of little clumps.

If a person tests positive on the card, the next step is to look directly at his blood, since the card can sometimes show a false positive. More blood is smeared onto slides, and then two health workers put them under microscopes and scan them for ten minutes to find the writhing parasites. Sometimes people complain of swollen nodes in their necks; these too get pierced, and the lymphatic fluid goes under the microscope for another trypanosome search.

Most people at today's screening don't have parasites in their blood. That's not to say that Madoro is healthy-the prevalence of sleeping sickness here is 7.5 percent. It's the third day of screening, and the most obviously sick people were brought to the health workers first. But people are here nevertheless. They want to get an official pink sleeping-sickness card, on which the health workers will write the date and a minus sign in the card test column. If they don't have one of these cards, they face six months in jail.

The lockup wasn't Richer's idea, but she doesn't seem to have a problem with it. "To find out who to treat, you have to find out who is infected, and the only way to do that is to test every village."
The people who test negative in Madoro will be tested again in a year; the people who test positive have to go to the clinic at Ezo. The clinic consists of a couple of one-room buildings and two white tents in a grassy clearing. In one of the buildings, Edward Losio puts on a pair of gloves as children gawk through the open window. Losio was trained at the Belgian hospital in the mid-1980s and helped carry on the medical care of Tambura County in the years when it was cut off from the world. He's a master at finding swollen nodules where doctors like Richer feel nothing.

If a person tests positive for sleeping sickness, there is only one way to know if the trypanosomes have reached the brain, and that is to perform a spinal tap. Losio's patient today-an old man whose khaki shorts are held up by a belt of twine-sits in a chair and crosses his arms, resting his hands on opposite shoulders. He bends his chest to his knees, so that the skin stretches taut over the bumps of his lower spine. An assistant presses his hands down on the man's head and neck: if he should flinch, the needle could nick his spinal cord. Losio works his fingers down the lumbar vertebrae and stops between two of them. In the chink between the bones he creases the skin with his thumbnail. Another assistant hands him the four-inch needle, which he runs smoothly into the man's back, deep enough that it sticks straight out by itself like a dart in a dartboard. The patient doesn't move, doesn't even make a sound. Losio pulls out the sharp metal inner cannula, leaving behind a plastic tube. A few drops of clear cerebrospinal fluid flow out, which Losio catches in a test tube. Then he pulls out the needle and presses a ball of cotton soaked in disinfectant on the puncture.

If the man is lucky-which he is today-Losio's assistant will find no parasites in the fluid and only a normal number of white blood cells. He can go to the white tents. This is where the early-stage patients are treated with a drug called pentamidine. The process is a little humiliating but efficient: the patients lie down in two rows, men on one side, women on the other, and hike up their skirts or pull down their pants. The nurses here have long needles of their own, which they jam into buttock after buttock. The patients screw up their faces and rub the skin afterward to make the ache die down a little. After ten daily injections, most of them are cured.

People with parasites in their cerebrospinal fluid have a much harder future ahead of them. Once a week a CARE truck arrives in Ezo, and they pile on to travel three hours up the jarring road to Tambura, through dense forests and boggy expanses filled with termite mounds, past little compounds and dome-shaped roadside graves made out of brick, until they arrive at the hospital compound. The county hospital has the calm feel of a village. The wards are a group of small buildings with empty windows and roofs of corrugated tin or thatch. Mothers, sisters, or daughters of the patients can be found cooking under trees. The patients who can walk often take their reed mats outside at midday in search of breezes. A goat stands in the clearing, its kid sucking at its udder.

The peacefulness is deceptive, though. Except for 20 beds for children, pregnant women, and patients who need surgery, Richer has converted the hospital's 70 beds to handle advanced sleeping sickness and added 80 more spaces in tents. Pentamidine is useless for the people who come here; in their advanced condition they need stronger stuff-a nasty potion known as melarsoprol. Melarsoprol is, essentially, a poison. It is almost 20 percent arsenic, and it can melt ordinary plastic Iv tubesRicher has to fly in tubes with a special coating as tough as Teflon.

If the melarsoprol should seep out of the vein, it kills the surrounding tissue, creating a swollen, painful mass of flesh. At the very least the therapy has to be stopped for a few days, and at worst the arm may have to be amputated. Jon Carsello has been teaching the nurses at the hospital how to administer melarsoprol and deal with its side effects. Each morning the nurses give dozens of injections. The adult patients bow their heads and clench their teeth as the drug hits their veins; the screaming children have to be pinned down.

Melarsoprol works its cure quickly. A story is told by the Tambura staff about two teenage brothers from Maridi, a village 470 miles away from Tambura. The younger brother slipped into a coma and the older one carried him to the hospital. With the first round of melarsoprol, the younger brother woke up right away. After a few more treatments he was restored to his former self. It takes a month to complete the treatment, and people need three months more to recover fully from the experience. But when the boy from Maridi was discharged, he and his brother simply packed their things, got a ride as far as Ezo, and started their long walk home.

Melarsoprol can cause trouble quickly too. In a small fraction of patients such as Justin Kalesto, the brain suddenly swells. Other patients come out of their comas in a psychotic state. Richer and Carsello remember some of the nicer psychotics fondly: the girl who danced through the yard all day, the boy who sang, another boy who escaped from the hospital, went to a compound where CARE workers lived, took 21 empty yellow plastic jerricans, and stacked them meticulously next to his bed. Others are harder to cope with: a man emerged from his coma and began throwing rocks at other patients; today he is tied to a post. "The police volunteered to keep him in their jail and bring him for treatment," says Richer, "but if you'd seen the jail, you'd rather be tied to a tree." He stands by his post, desperately trying to find the words to talk to visitors, scans the crowds of people laughing at him, and looks about ready to cry.
The next day Justin is still alive. In fact, the swelling of his head and neck has gone down, his nose is clean, and when Richer comes to examine him he is propped on his elbows, slowly drinking broth out of a bowl. He still doesn't want to smile or talk, but Richer is glad to see he's better. It means he'll probably be cured.

Outside the ward there's a lot of commotion. A few dozen people are coming together near the hospital gates, the latest round of the cured and their caregivers. At 11 in the morning the caRE truck rumbles into the courtyard. The psychotic is still psychotic, and a male nurse unties him from his post, brings him onto the truck, and ties him to a bar by the cab. He sits on the truck bed, holding his hand over his eyes, and sobs. Old women are hoisted up, sleeping mats are tied to the truck's sides, and younger people climb on.

Things go smoothly until the end, as it becomes clear that some people in the crowd aren't from the hospital; they simply want to get a ride to Ezo. The truck is getting crammed with passengers and a panic is set off. Babies and a spare tire are being squeezed in. To make the round-trip before curfew, the truck has to leave now, so there's no hope of sorting out the mess. All Richer and Carsello can do is stop anyone else from getting on. The truck pulls away, leaving some patients behind; they'll have to wait a few more days before getting home.

Only a little of Richer's irritation shows as she marches away to take care of her next item of business. She's had plenty of experience coping with things not going as planned. Her original plan, which she drew up last fall, was to stop the epidemic by wiping out the disease throughout Tambura County. It called for screening every village, testing everybody in the ones hardest hit, identifying the patients' stage of the disease, treating them, and following them up for two years to make sure they didn't relapse. The price tag came to $2.4 million for the first year, which is actually a bargain when you consider that Richer was facing a Third World epidemic that had to be cured at First World prices. Pentamidine is used mainly as a cure for a parasite that plagues people with AIDS, so a course of treatment for sleeping sickness has skyrocketed from $10 to $300 (though IMC has been able to get some pentamidine at a discount). Melarsoprol costs $140 for a month's treatment.

This time the Office of Foreign Disaster Assistance agreed to come up with money, but only $1 million to be split between IMC and cARE-enough to screen and treat 20,000 people. "The government said, `I'm sorry, it's a million. You can find and treat as many people as you can with a million, but that's it, you're not getting any more,"' says Richer. "I cried and fought and yelled and screamed and kicked-I would have bit people if they got near me. I said to them, `God, how can I pick which 20,000?"' According to Valerie Newson Guarnieri, senior regional team leader for USAID'S Office of Foreign Disaster Assistance, stopping the outbreak was beyond their focus on primary health care in southern Sudan. "Our goal was to address the major causes of morbidity and mortality, things like malaria, diarrhea, respiratory infections. Sleeping sickness was not part of that strategy," she says. "We were willing to contribute to get the disease back down to endemic levels, but we just don't have the resources to eradicate the disease. We hoped our initial input would help bring other donors to the table." It didn't.

Richer realized that her original plan would be useless now "We had to scale down, so we decided we were going to pick one geographic area." They chose the region around Ezo where they had measured the worst rates of sleeping sickness. In Richer's original plan, she hoped to break the parasitic cycle solely by curing people. The flies in the county wouldn't pick up parasites when they bit humans, and gradually the infected flies would die off, taking the trypanosomes with them. But now that she would be treating a smaller group of patients surrounded by thousands of infected people who could pass on the disease, she started thinking more like an exterminator.

"We have to start controlling in the areas we have treated so that people don't get reinfected," she says. Fortunately tsetse flies aren't frenzied breeders like mosquitoes: each female fly lays a single egg every three months, and once a young fly is infected with trypanosomes, the parasites need ten days or more to mature. That means that trapping insects can clear an area of many of its trypanosomes. Entomologists from a British aid group are now helping villagers in Tambura County lay fly traps in the worst tsetse hot spots.

Richer knows she is not dealing with one freakish pocket of sleeping sickness; reports from other parts of southern Sudan suggest that all the historical hot spots for trypanosomes are flaring up again. In the Central African Republic, an entire village reportedly disappeared. In the Democratic Republic of Congo, researchers estimate that there are more cases of sleeping sickness now than at any time this century and that the number of people dying from it rivals the number dying from AIDS. Epidemics of sleeping sickness are also flaring up in Angola, and rates of the disease are creeping up in West Africa, simply because health ministries can't afford to screen for the disease.

The World Health Organization estimates the annual death toll from sleeping sickness at perhaps 300,000. "We know that so many people are just dying in their villages, and villages are disappearing, that the official numbers are just a small fraction of the actual cases," says Anne Moore. "This is a classic example of a reemerging infection. This is a disease that was down to near-zero levels and just because they abandoned control, it's back with a vengeance."

As of April, Richer s staff had screened more than 10,000 people, and they'd treated more than 1,500 of them. Only 4 people out of 700 in the first stage of sleeping sickness died, and 20 out of 800 stage 2 patients. About 10 percent of stage 1 patients have relapsed, and 25 to 35 percent of stage 2 patients. Some of them can be treated with alternative drugs, but others can't be helped. Richer has in fact managed to keep this corner of Tambura County healthy, but she doesn't feel much sense of victory. "I'm not deluding myself that by treating 1,500 patients we've done anything with the epidemic. Probably not. There are probably 12,000 infected people out there, and still a lot of people left for those tsetse flies to bite. But you've got to start somewhere."

Copyright 1998 Carl Zimmer
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