Article on Guinea worms

Awhile back, I wrote about Dave Goldsman’s research on using OR to eradicate Guinea worm in Africa. Over the weekend, the Chicago Tribune wrote an excellent piece on Guinea worm disease. I posted it here.

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Doctor without borders
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Four decades ago, Donald Hopkins helped wipe smallpox off the face of the Earth. Now he is poised to do the same with another ancient horror.

By Colleen Mastony
Tribune staff reporter

May 12, 2007

In a dusty, open-air treatment center in Savelugu, Ghana, where patients are crying in pain, Dr. Donald R. Hopkins once again meets his enemy: Guinea worm disease.

For millennia, the worms, which grow to a yard in length, have tormented the people of Africa and central Asia, spreading through larvae in the water and growing inside people’s bodies before bursting into the open from blisters on the skin. Slowly the worms emerge, inch by painful inch, from the tiny feet of children, the eye sockets of adults or even the abdomens of pregnant women.

For nearly three decades, Hopkins, a 65-year-old Chicago physician, has fought the scourge, chasing it across the savannas of Africa and down the muddy rivers of India. He has stamped it out in 11 countries. Now, with fewer than 25,000 cases left–down from 3.5 million in 1986–Hopkins stands ready to strike the final blow, making Guinea worm the only disease in history other than smallpox to be successfully eradicated. But in this moment, Hopkins sees that he has lost a battle.

The Savelugu center looks like a scene out of hell. Flies buzz through the air and, all around him, patients scream. A woman winces as a 2-foot-long worm–as thin and white as dental floss–emerges from her breast. And a girl in a pink dress cries in terror as a worker pulls six inches of stringy worm from her tiny finger.

It is a plague of biblical proportions. But the doctor does not flinch. He wipes his forehead and slowly kneels beside another crying child, who looks no more than 3. The girl sobs as a worm–fully 3 feet long–is pulled from her foot. Hopkins gently pats her back, and in a soft voice, barely audible above the sounds of suffering, whispers: “It’s OK. It’s OK.” Tomorrow, he will resume his struggle against the horrifying epidemic. Today, it is enough to comfort a crying child, to tell her that she is safe.

This is the story of one man’s quest to cure the world, the story of a black man who grew up in the segregated South with the dream of becoming a doctor and, as he puts it, “a deep determination to show the world what I could do.” Determination drove him to medical school at the University of Chicago, where he was the only African-American student in his class, and later to the pinnacle of the country’s public health system, the U.S. Centers for Disease Control and Prevention, where he became acting director. Now it compels him to the sun-scorched villages of Africa, where he wages his war on worms.

Former President Jimmy Carter has become a partner in the fight. At 82, Carter–with thinning white hair and slowing gait–journeyed with Hopkins across Africa in February to draw attention to the disease. “There have been few heroes in my life and Dr. Donald R. Hopkins is one of them,” Carter says.

Named after Nigeria’s Guinea Coast, where it was observed in the 17th Century by European explorers, Guinea worm is a plague so ancient that fragments of the thread-like parasites have been found in Egyptian mummies. Experts believe the worms to be the “fiery serpents” described by the Old Testament. Even the symbol of medicine –the snake-entwined staff of Asclepius–is said to depict the age-old practice of removing Guinea worms by slowly winding them around a small stick.

The disease–whose Latin name, dracunculiasis, means “little snake”–has attacked the most remote corners of the earth, places beyond the reach of modern water systems, where people gather drinking water from muddy ponds. The larvae of the worm lie in wait in the water and, once ingested, grow for a year inside the stomach or the abdomen. Then, in a horrible example of evolutionary adaptation, the worms make their agonizing exit from the body. To relieve the pain, people soak the sores in ponds. But in the water, the worms release their larvae, beginning the cycle once again.

With his receding, closely cropped hair, steel-rimmed glasses and immaculately pressed khakis, Hopkins looks like a college professor. He speaks quickly, packing his sentences with facts, conveying information in the fewest syllables possible. He even moves quickly–as if he has a stopwatch running.

A colleague calls him “pathologically optimistic” and indeed Hopkins has fought Guinea worm with a smiling perseverance. But that quality is being tested in Ghana, where the disease is surging. Last year, the number of cases increased in the northern region by 23 percent. In the treatment center, Hopkins confronts what it would mean to fail. His voice betrays his anger.

“Did you see this child?” he says, pointing to a screaming boy whose mother is pinning his arms so a health worker can pull worms from his shin. He turns to two more boys with bandages around their legs and feet. “And these little guys. They should be jumping around and playing soccer. An outrage.”

Guinea worm is one of many diseases that plague the developing world’s poor–including schistosomiasis, which is caused by worms that destroy the internal organs, and fly-borne trachoma, which turns the cornea opaque and is the world’s leading cause of preventable blindness. Many of these illnesses are passed over for treatment because, although their symptoms are grim, they are rarely fatal. Meanwhile, scarce dollars go to fight diseases that kill, such as malaria, tuberculosis and AIDS.

The world has long known that drilling wells can defeat the worms. But that takes money. Hopkins–who specializes in infectious diseases and has a master’s in public health–has hit on a cheaper, lower-tech solution: distributing millions of cloth filters, through which drinking water can be poured and purged of the Guinea worm larvae.

For his work, Hopkins has won a MacArthur “genius” grant. His book, “The Greatest Killer,” a riveting and exhaustive account of the history and conquest of smallpox–in which he played a key role–was nominated for the Pulitzer Prize. (The book was originally published in 1983 and reissued in 2002).

He has been knighted in Mali, and presented with a horse in Niger. Two areas in Nigeria named him an honorary chief, and townspeople there dubbed him “Redeemer of Less Privileged” and “Healer of the World.”

In Chicago, he lives quietly in a beige, two-story home with white trim in Lincoln Park, with flower boxes below the windows and pink rhododendron bushes outside the door. From a small upstairs office, he runs a half-dozen health programs, including the Guinea worm campaign, for the Atlanta-based Carter Center. He commutes to Atlanta twice a month, and to Africa four to six times a year.

Books about African history and infectious diseases crowd his shelves. Maps and epidemiological charts hang from the wall. Hopkins refuses to get e-mail, call waiting or a cell phone. “Distractions,” he complains. Often, he wakes in the middle of the night, and returns to his office to work. On his desk, he keeps a collection of carved woodpeckers, his favorite bird. They, like him, are killers of worms.

Already, Hopkins’ eradication campaign has taken more than a decade longer than expected. But he refuses to admit that he was ever discouraged. “Not discouraged,” he says. “Surprised and exasperated but not discouraged.”

Hopkins learned determination early, growing up in then racially oppressive Miami. His mother, Iva Louise Hopkins, a seamstress with an 8th-grade education, would sit at her sewing machine, quizzing her 10 children on their multiplication tables and reciting poems that she had committed to memory. One of her favorites poems was “Don’t Quit,” by an unknown author.

Don’t quit, Iva Louise told her children. Not in the face of the 6-foot wall that then separated the city’s black and white neighborhoods. Not in the face of the segregated public buses, the segregated schools, the tattered, secondhand schoolbooks discarded by whites and handed down to the blacks.

As a child, Hopkins dreamed of becoming a doctor. In 10th grade, he won a science fair with a clay model of the digestive system. He was 15 years old and barely more than a boy–weighing less than 90 pounds–when he entered Morehouse College in Atlanta in the fall of 1957.

From the moment Hopkins first saw pictures of Guinea worms in a biology textbook his sophomore year, something fascinated him about the awful creatures. “A spectacular disease,” he recalls, a hint of awe in his voice. “I never forgot it.”

Graduating from Morehouse at the top of his class, he landed a spot in the fall of 1962 at the University of Chicago’s medical school, where he took his first steps along the path he was drawn to, specializing in tropical medicine.

Hopkins met Ernestine Mathis–an electron microscopist at the University of Chicago Medical Center. Like Hopkins, she had been one the few black students in her class and was launching a promising career.

“I was very impressed with this very beautiful young woman,” he recalls. But shortly after their first meeting, Mathis passed Hopkins in the hospital hall as if she didn’t know him. “I thought, ‘Well, she is not interested in me,’ ” Hopkins says.

But it wasn’t disinterest. It was poor vision. Mathis disliked her glasses and hadn’t worn them that day. “I was very vain,” she says, laughing. She and Hopkins married in 1967.

Soon after, they traveled to Sierra Leone, where Hopkins had joined the World Health Organization’s smallpox-eradication campaign. At the time, the idea of wiping out a disease was highly controversial. Billions of dollars had been poured into attempts to conquer hookworm, yellow fever, yaws and malaria. And every attempt had failed.

Yet Hopkins believed deeply in the smallpox effort. The disease–one of the most lethal pathogens known to man–killed one of every four victims, and inflicted survivors with scars and even blindness. In his zeal, Hopkins sometimes walked 10 miles to reach villages that were inaccessible by road, and he was known to stay in the bush for more than two weeks, living in mud huts and bathing from a cup. Ernestine Hopkins worked by his side, helping to line up villagers for vaccination and conducting research interviews.

“We had to endure things that I couldn’t do now,” Hopkins recalls. He twice caught malaria–a disease that can kill within 24 hours–and suffered days of shivering and retching.

Sierra Leone, at the time, had the highest rate of smallpox in the world. Hopkins and a partner from the CDC, James Thornton, worked with 40 teams that fanned out across the country, using high-powered injectors capable of vaccinating 1,000 people an hour.

“The teams didn’t have a lot of interest in smallpox eradication. But Don was able to motivate them. He was very firm, very positive. Anytime he spoke he said, ‘Smallpox can be eradicated,'” recalls Thornton, 66, now retired from the CDC. “I think that’s what Don has done all his life. He’s just a hard, steady, brilliant worker.”

Within 18 months, they had rid Sierra Leone of smallpox. It was a stunning success, the first country-wide demonstration of a new strategy called containment and surveillance. Rather than vaccinate an entire country, roving teams moved quickly, searching out individual cases and vaccinating the families and close contacts, building a firewall of immunity before an epidemic could explode.

The strategy spread around the world, and by 1980 the World Health Organization declared the planet free of smallpox. It was a public health triumph of epic proportions, one that has saved an estimated 50 million lives. It left Hopkins deeply inspired.

“Here is a disease that people thought could not be eradicated,” Hopkins says. “It was causing all this trouble around the world. I heard people saying early on that eradication would never happen.” But smallpox had been wiped out. And, Hopkins believed, another disease would be eliminated in the future.

The same year the smallpox campaign ended, Hopkins attended a WHO meeting in Geneva, where a French doctor told him how Guinea worm disease had recently disappeared in Ivory Coast after the government began drilling wells for drinking water. Hopkins began thinking about the worms, vividly remembering them from his textbook at Morehouse.

A few nights after meeting the French doctor, Hopkins woke in the night with an idea: Why not launch an eradication campaign directed at Guinea worm? It was sometime after 2 a.m. The room was dark and quiet. Ernestine slept beside him in bed. Hopkins slipped from the covers, grabbed a pen and paper and tiptoed into the bathroom. He switched on the light, sat down and began scribbling a plan.

By then, Hopkins had taken a job with the CDC, directing international health programs.

He began lobbying for an effort against Guinea worm, banging out letters to health officials, producing a glossy brochure and starting a newsletter. For the first several years, Hopkins made scant progress. His Guinea worm campaign remained little more than a personal crusade consigned to his off hours.

Even after the success of the smallpox crusade, many people remained deeply skeptical about eradication. Critics argued that it was better to invest in primary health care than to pour money into a single disease. They pointed out that Hopkins had no vaccine. Some implied that because Guinea worm was rarely fatal, it was not important.

But Hopkins, by now acting CDC director, persisted. And in the spring of 1986, he made a presentation to a conference held by the new Carter Center, a non-profit established by Jimmy Carter.

Hundreds of attendees crowded the ballroom of an Atlanta hotel. But Hopkins had eyes only for Carter, sitting at the front of the room. Hopkins knew the former president was searching for health programs to adopt under the aegis of his new organization.

At the podium, Hopkins emphasized the potential to eradicate Guinea worm disease. Then the lunchtime presenter, Dr. Peter Bourne, of Global Water, a non-profit that works to reduce water-borne illnesses, showed slides related to the ailment. In the darkened room, as the terrible pictures flashed on the screen, the audience gasped.

Carter was intrigued. He wanted his new center to take on problems that no other agency had tackled. Guinea worm seemed ideal. “Nobody else had ever heard of dracunculiasis and they certainly didn’t care,” Carter recalled in February, sitting down for an interview while traveling in Nigeria. “The thought that goes through anyone’s mind is, ‘Why?’ Why is this preventable disease still there and causing this indescribable suffering?”

Shortly after the conference, Carter visited Pakistan, one of the 20 countries where Guinea worm festered. At a meeting, Carter broached the topic with Pakistan’s president, Gen. Muhammad Zia-ul-Haq. Zia had never heard of Guinea worm disease, and neither had his minister of health. But the prime minister had grown up in a village racked by the disease. He urged Zia to address the problem. A subsequent survey of the countryside found thousands of cases of Guinea worm, and soon Zia had agreed to launch an eradication program.

By 1987, the Carter Center had hired Hopkins. The following March, Hopkins and Carter visited two villages in Ghana where the disease was endemic. As they walked through the village, they saw that nearly half of the residents had worms coming out of their bodies. People lay on the ground under shade trees, grimacing as they moved, their limbs swollen with sores.

“I walked up to this beautiful young woman. I would guess she was not yet 20 years old. I thought she had a baby in her arms. But she was holding her right breast, and from the nipple a Guinea worm was coming out. She was suffering excruciating pain,” Carter recalled. “Later they found she had 11 other worms emerging from other parts of her body.”

Slowly, campaigns were launched around the world. Carter met with international leaders, opening doors that had long been closed. Meanwhile, Hopkins established programs, one after another: Ghana in 1987, Pakistan in 1988 and Nigeria in 1989.

At a meeting in Nigeria, the Carter Center raised almost $10 million. The figure stunned Hopkins, who just a few years earlier had fought for every dollar. When Hopkins stepped to the lectern, emotion overwhelmed him. “He started out, and his voice cracked. His eyes started to well up. He was, for about 30 seconds, struggling to control his emotions,” recalls P. Craig Withers Jr., director of program support at the Carter Center. “He was starting to realize that this was going to happen.”

At first, the effort focused on improving water supplies. But digging wells proved expensive and time-consuming. With time, organizers found a simpler solution: water filters–made for about a dollar each, and through which drinking water could be poured and purified. Health workers distributed the filters, hired guards to watch ponds and taught villagers about the disease.

The program hit obstacles and took detours. Bureaucratic resistance, tribal warfare and rainy-season flooding posed constant challenges. The program struggled through the 1990s, when a donor country failed to send long-promised money. At home, Ernestine Hopkins spent many weeks alone. Hopkins missed his initial 1995 target date for worldwide eradication.

But Pakistan succeeded in eliminating the worms in 1993. Kenya did so in 1994, then India and Chad in 1996. More countries followed–Senegal, Yemen and Cameroon–and by 2006, only nine out of the original 20 countries still had Guinea worm. Many teetered on the edge of eradication, reporting fewer than 50 cases a year.

As cases plummeted, one of the few persistent pockets of disease remained in Ghana. While surrounding countries like Togo, Burkina Faso and Ivory Coast closed in on the number zero, Ghana’s caseload still hovered between 4,000 to 8,000 per year. Neighboring countries began complaining that cases of Guinea worm were coming in over their borders from Ghana.

Last December, Hopkins received dismaying news about a new outbreak, centered around Savelugu, a town of about 29,000 in the north of Ghana. In February, Hopkins packed his red suitcase, took a taxi to O’Hare International Airport and began a 20-hour journey to join Carter in Africa.

From above, northern Ghana looks like a vast brown wasteland, pancake-flat and dotted with scraggly trees and bushes. The town of Savelugu comprises two square miles of trash-strewn lots and round mud huts. This is one of the driest regions of the world; Savelugu has enough clean water for just 20 percent of its residents. Those who can afford well water keep it in steel drums, secured with padlocks. The rest of the townspeople take buckets to the stagnant ponds, which are incubators for the disease.

By early 2007, an epidemic was raging. All over town, blisters began appearing and worms started to emerge. A tidal wave of patients–700 in January alone–overwhelmed the local health center.

In February, a chartered plane touched down at the regional airport and a motorcade, preceded by flashing lights and siren, cut across the barren landscape, kicking up clouds of dust. It pulled up to the Savelugu Hospital–a one-story collection of dilapidated concrete buildings with a red dirt driveway. A chorus of children, dressed in rags with dirty bandages on their feet, welcomed the visitors with a song to the tune of, “If you’re happy and you know it, clap your hands”–except the words had been changed to, “If you see a Guinea worm, tell your teacher.”

With his wife, Rosalynn, at his side, Carter stepped gingerly from his bullet-proof SUV, shaking hands and waving to the crowds.

Inside the hospital, Carter walked among the patients, stopping to take the hand of a girl, who held back her tears as a worm was pulled from her body. The former president watched as a health worker drew a worm from a woman’s breast. Carter soon left the ward, taking with him the crowd and cameras. This was just one stop on a whirlwind trip.

But Hopkins lingered, telling a colleague to go on without him. Hopkins was accustomed to spending more time with patients. A young man in a school uniform caught his attention. Spread the word about Guinea worm disease, the Chicago physician said–always ready to make an ally. The man promised he would. An aide appeared, and urged Hopkins to join Carter. As Hopkins walked away, he turned and looked at the patients. “There is still not enough outrage about this,” he said.

Outside the hospital, a crowd of nearly 200 people–from barefoot children with bandages on their legs to public officials dressed in flowing robes–gathered to see Carter. Few had heard of Hopkins.

The chief of Savelugu stood at a microphone and asked Carter for “a big pumping machine which will help give us enough water.”

Everywhere, people are desperate for clean water. But the wells are expensive, and engineers often can’t find water in the ground. In an apparent side effect of global warming, water has slowly been disappearing from this region.

Carter stepped to the microphone. He seemed slowed by age. But when he spoke, his voice was strong and instantly recognizable.

“This is one of the last communities in Ghana that has Guinea worm, so you must help yourselves eradicate this disease,” Carter told the townspeople, his amplified voice booming across the hospital grounds.

“How many of you have ever had Guinea worm?” he asked. Hundreds of hands shot up. Nearly everyone in the crowd had a hand in the air. Hopkins shook his head.

Then Carter asked: “How many of you will filter every bit of water in the future?”

Just as many hands went up.

Back at home in Chicago, Hopkins leans over his desk. On a shelf, inside a jar of rubbing alcohol, he keeps a dead Guinea worm he has named “Henrietta.” He hopes that someday soon Henrietta will be the last worm on Earth.

“I know we’re close. But we’re not close enough,” he says, his voice urgent, his gaze intense. “I’m not going to be satisfied until that last worm is gone. And it’s partly out of fear. Because I know that if this program were to fall apart, Guinea worm could come back. All that has been invested in time and money could be lost.”

Half a world away, a scourge lives on. The good doctor turns back to his desk. Etched in his memory are the words of his mother: “Don’t quit.” E
Copyright (c) 2007, Chicago Tribune