Donald Hopkins keeps his enemy in plain sight. Henrietta sits on a bookshelf in the doctor’s home office, coiled like a yard-long strand of spaghetti, in an alcohol-filled glass jar.
The dead Guinea worm has been there for most of Hopkins’ tough slog against a disease that he is finally on the verge of vanquishing.
He doesn’t know why he called her Henrietta except that he might have thought of a Dutch princess by that name. But Henrietta inspires Hopkins to soldier on. She reminds him of the resilience of people who have experienced the excruciating scourge of Guinea worm, a water-borne parasitic disease that culminates with milky white worms bursting from festering blisters on human skin.
Soon, Hopkins hopes, Henrietta will be the last of her kind.
“My passion,” he says, lifting the jar off the shelf, “is to see the end of this worm.”
It has been a passion, as well, for former President Jimmy Carter. Last August, when Carter announced to the world that he was battling brain cancer, he expressed this wish: “I hope Guinea worm dies before I do.”
That wish may very well come true.
Carter has been declared cancer free. And Guinea worm cases now number 22, down from 3.5 million in 1986, when the Carter Center tapped Hopkins to lead the global eradication effort. Back then, Guinea worm terrorized people in 21 countries. Today, the remaining cases are limited to isolated parts of Chad, Mali, South Sudan and Ethiopia.
Guinea worm never commanded attention like malaria or polio. Perhaps that’s because the disease — aptly known in Latin as dracunculiasis or “little snake” — was not indigenous to the West and mainly affects people in African and Asian nations with poor water sanitation. Perhaps it’s also because Guinea worm is generally not a killer. It still can be devastating: It is so painful and disabling that it often keeps impoverished men and women from working for months or even years, and children from attending school.
“We’ve kept 8 million people from having Guinea worm, and now we are approaching the end of the process,” Carter says. “I would say this is perhaps the most gratifying personal experience I have had in the so-called successes of my life.”
For that reason, Carter calls Hopkins a hero.
Hopkins’ quest to succeed began early in life. Few things faze him, and a pathological (that’s the word his colleagues use) optimism has buoyed him through formidable challenges.
But the disease doctor has learned to temper his excitement in what has been a long and weary fight against Guinea worm. Several target dates for eradication have come and gone and Hopkins knows that even now, on the precipice of victory, a setback could happen. All it takes is for one sick person to contaminate a water supply and an entire village can become infected.
“That’s one of the things that keeps me up at night,” Hopkins says. “The worm has a prolific reproductive cycle.”
Hopkins, who will turn 75 this September, hopes he will be around to see the World Health Organization declare Guinea worm dead.
“God willing. I take great satisfaction in knowing that this worm will be gone.”
And when it is, Hopkins, will be in a class of his own.
Eradicating an infectious disease is no small task. Only one other human disease has ever been stamped out: smallpox in 1980. Hopkins, who worked for many years at the Centers for Disease Control and Prevention, played a key role in that effort as well.
Now he stands to accomplish a public health feat as the man who killed two horrific diseases.
From Miami to Mali
On this wintry day in the Windy City, the white stuff is blowing sideways. Hopkins uses a broom to clear the wooden steps leading to his front door for his CNN visitors.
He moved here to be closer to his wife Ernestine’s family and for a while commuted to work at the Carter Center in Atlanta. As the center’s special adviser on Guinea worm, Hopkins, a 1995 MacArthur “genius” grant recipient, now wages war on the worm from a small office equipped with a laptop, a land line and a fax machine. He doesn’t have a cell phone; nor does he care much for e-mail. He thought his pager annoying during his medical internship at San Francisco General, and his dislike for such devices has only grown. “Distractions,” he calls them.
Hopkins’ Victorian-era townhouse near Lincoln Park is embellished with things he’s collected throughout his career. They add up, like pieces of a puzzle, to reveal a man of many distinctions: a black man who succeeded despite the obstacles of racial injustice. A man who delves deep into whatever captures his interest.
There’s a small idol of Sitala Devi, the Hindu goddess who protects from smallpox, and an award plaque with pump handles on it in honor of John Snow, who traced a 19th century cholera outbreak in London to a single contaminated water pump and is considered the father of modern epidemiology.
Hopkins owns an old Brooklyn Dodgers pennant (because of barrier-breaker Jackie Robinson) and a Lion of Judah flag (because he was impressed with Ethiopian ruler Haile Selassie).
He framed a certificate of his 1998 knighthood in Mali. Among his many books is his own, “The Greatest Killer: Smallpox in History,” which earned him a Pulitzer nomination. And on top of his bookshelf is a collection of blue bottles, most of them antique medical vials and one empty bottle of the Luna di Luna wine he shared with Ernestine on a vacation to one of their favorite spots, Martha’s Vineyard. “I like the color blue,” Hopkins says.
He also likes orchids. A customer on his childhood paper route brought back the delicate flowers from the Everglades, and Hopkins realized then that they were so much more than corsages. He wishes he could have a greenhouse at home to grow them in Chicago’s weather.
But perhaps most striking are the myriad pictures and carvings of woodpeckers. His fondness for the birds began as a young boy when he glimpsed a pair of pileated woodpeckers the size of pigeons in an oak tree at his grandmother’s house. He was taken by their red crests, unusual posture and loping flights.
Later, in Nigeria, Hopkins learned that the Yoruba concept of ashe, or the power to make things happen, was symbolized by a woodpecker. He recognizes exemplary work by his team members by sending notes rubber-stamped with a woodpecker image, a gesture coveted like a Nobel Prize at the Carter Center.
All these years later, Hopkins recognizes his fascination seems fitting: Woodpeckers are persistent at picking off worms.
Photographs of his parents and family hang in the hall outside his second-floor office. Hopkins traced the genealogy of his Bahamian ancestors and credits his parents for giving him the right start in life.
He was one of 10 children born to Joseph Leonard Hopkins, a carpenter who built three family homes, and Iva Louise Hopkins, a seamstress who made all her children’s clothes. The family lived in the Bahamian section of Coconut Grove in Miami.
Under Jim Crow, the city was strictly segregated and built concrete walls to keep blacks out of white areas. Hopkins remembers black kids never got the new shiny things white kids got. He rode on rickety school buses, sat at scratched-up desks and read second-hand textbooks.
“In that day and age, to raise 10 black children and have them stay out of trouble and have most graduate from college was a big deal,” he says. “I didn’t understand how much my parents sacrificed for us.”
He can’t say that segregation touched his life in a sinister way. “It was just the way things were,” he says. But later in life, the experiences of his youth informed his work chasing disease from the Ganges Delta to the jungles of Ghana.
His mother often made her children recite multiplication tables while she sat with her foot on the pedal of her sewing machine and read out the poem, “Don’t Quit” to inspire them.
Hopkins was barely a kindergartener when he realized he wanted to study medicine. At 4, he was badly scalded by a solution of lye and hot water his brother was using to take paint off his bike. That first encounter with a doctor ignited his desire to be one.
He was a good student but knew college would be a financial burden for his parents. Then, in the 10th grade, Hopkins won a full scholarship to attend Morehouse College. He quit high school and his job as a paper boy and landed in Atlanta in 1957.
He was 15 and weighed a mere 87½ pounds.
He sat through four years of tough classes with talented classmates like Julian Bond, the late civil rights activist, and inspiring professors who every day reminded him: Black people before you have beaten the odds and done well. So can you.
It was in his sophomore year at Morehouse that Hopkins first learned about the fiery serpent. A biology textbook contained a picture of a woman with a long worm erupting from her body.
“I never forgot it,” Hopkins says, not with disgust but with the kind of awe a warrior might have for the most menacing enemy on the battlefield.
He carried that image with him as he equipped himself to become the greatest slayer of the worm.
Epiphany
If Hopkins ever came close to having an epiphany, it would have been on a trip to Egypt in February 1961.
After his junior year, Morehouse gave him the chance to study at the Institute of European Studies at the University of Vienna. During that stay, Hopkins and three friends traveled by train to Istanbul and Greece and then hopped a boat across the Mediterranean.
On the banks of the Nile, Hopkins saw swarms of flies surrounding children and adults, feasting on the mucus and discharge from their eyes.
He did not know then that those people were suffering from trachoma, an infectious eye disease that can cause blindness. But he knew at that moment that he wanted to study tropical diseases. Surely something could be done to prevent such suffering.
The next year, Hopkins graduated from Morehouse at the top of his class and entered medical school at the University of Chicago with the energy of a radioactive particle.
He was the only African-American in his class and intent on making his professors proud. He graduated four years later, in 1966, and reported for his first job at the CDC. It was the same year the World Health Organization launched its global campaign to wipe out smallpox.
William Foege, the esteemed epidemiologist who steered the campaign, remembers walking in early into a room at the CDC for an informational session. Hopkins was already there, engrossed in that day’s New York Times.
Foege dispatched Hopkins to Sierra Leone, which then had the highest rate of smallpox in the world. He led a team that implemented a new strategy devised by Foege of surveillance and containment, which focused on stopping transmission by finding and treating people who had been in close contact with infected people, instead of the previous, less-effective program of mass vaccinations.
Sierra Leone reported its last case of smallpox in April 1969. Foege credits Hopkins’ work for how quickly that country became free of the deadly virus. Several years later, the CDC sent Hopkins, who by then had earned a master’s degree in public health from Harvard, to India to lead the effort there.
In 1974, India reported a peak 188,000 cases; when Hopkins arrived, he was taken aback by the population density. He was also met with a great deal of skepticism. A man from Delhi told him that he knew his country better than Hopkins did and that smallpox would never be stamped out there. By May 1975, India was free of the killer disease.
The World Health Organization certified the end of smallpox in 1980. Foege’s surveillance and containment strategy had worked at a record pace, and Hopkins intended to use it on his next target: Guinea worm.
Two years later, he found himself back in India. That’s when he first came face to face with the serpent.
Crusade against the worm
The man in the Indian city of Aurangabad had skin as dark as tar. The worms were milky white. From a distance, it looked to Hopkins like someone had thrown a bowl of noodles at the ailing man. Hopkins had never seen anything quite like it before. He found Guinea worm “fascinating.”
Hopkins was just beginning his crusade against the worm. Yet the creature was as ancient as the Bible. Many scholars believe the fiery serpents that attacked the children of Israel were Guinea worms, and a calcified worm was unearthed in a 3,000-year-old Egyptian mummy.
Over the centuries, depictions of horrific Guinea worm infection have been documented in texts and pictures from Egypt to India.
Human beings contract the disease when they consume water from stagnant sources contaminated with the worm’s larvae. Inside the body, the larvae mate and female worms grow for a year. After the incubation period, the female worm creates a painful lesion in the skin and pushes out from the body in search of a water source to deposit her millions of larvae.
It can take weeks, even months, for the worm to fully emerge. There is no treatment except to wrap the worm around a stick to facilitate its removal. Hopkins says it’s plausible the symbol for medicine — two serpents wrapped around a stick — are not snakes, as is commonly believed, but Guinea worms.
People have no option but to suffer through the process. If the worm is broken, its larvae goes into skin tissue.
The temptation is to seek relief from the terrible burning sensation caused by the emerging worm by immersing in water. But that just makes everything worse. Contact with the water triggers the Guinea worm to release her larvae and begin the cycle of infection all over again.
That first case Hopkins saw in India was tame compared to the suffering he would see later. It was especially difficult for him to hear the screams of children, some with multiple worms exiting their frail bodies.
For former President Carter, the indelible image is from Ghana, where he saw a worm piercing through a woman’s nipple. She also had 11 other worms exit her body.
There is no cure for Guinea worm, no vaccine to guard against it.
Hopkins’ challenge was how to prevent it and get rid of it altogether.
It would be a very different fight than smallpox, but again Hopkins set about his daunting task with aggressive surveillance programs that exposed the scope of the disease. Nigeria, for instance, reported a couple thousand cases a year. Hopkins discovered the shocking reality that the country really had 700,000 cases. Very few nations were cataloging the disease accurately.
“What he did was use good science,” says Foege. “In a public health program, there’s no substitute for truth. You have to know what’s going on. You have to have a surveillance program that actually lets you know how bad the disease is.”
Hopkins’ big boost came when Carter joined the fight.
Hopkins knew the power of support from big names and thought about courting someone like singer and activist Harry Belafonte to front the effort. But Hopkins had never imagined a former president would put his heart and soul into Guinea worm. Carter did so because he was so shocked that millions of people were suffering from something that was totally preventable.
Carter’s name brought immediate publicity and, more important, money and resources to fight what had been an obscure disease.
Guinea worm once existed in many parts of the world but gradually disappeared with improved water sanitation. The key was to provide clean water to people in endemic countries.
Prevailing thought was to dig wells or treat the remaining contaminated water sources with chemicals. But the answer, Hopkins realized, was far simpler. It did not involve sophisticated science or expensive drugs. All he had to do was to stop infected people from re-contaminating water sources and get them to strain their drinking water.
It wasn’t about sticking a needle into someone’s arm. It was about convincing people to make lifestyle changes and then motivating them to stick with their new routines. It was a simple solution that turned out to be far more complicated to implement.
“The big issue is with the life cycle of the worm,” says Craig Withers, a senior Carter Center health official who has worked with Hopkins for many years. “You don’t know for a whole year if you are infected and we don’t know the impact of our work until 12 months later. Whatever the results are for 2016 have already been determined in 2015.”
With smallpox, people could see the results of refusing vaccinations. With Guinea worm there were no immediate signs that could convince villagers to strain their water.
Hopkins and his teams were persistent. They went to work convincing people to use filters with a fine mesh developed and donated by the DuPont chemical company. They empowered villagers to take control of their destinies by educating them and assigning monitors to keep watch over water sources.
In the last four countries still reporting cases of Guinea worm, the people affected are among the most marginalized, Withers says. They are often distrusting of outsiders. And outsiders have not always been kind to them.
In his smallpox days, Hopkins saw foreign health workers descend on villages and towns in Asia and Africa with a sense of superiority.
“They’d come with this attitude: ‘I have degrees. I am from America. And I am here to tell you what to do, you ignorant people,'” Hopkins recalls.
“People, no matter how materially poor they are, no matter their circumstances, pick up on that and they resent it.”
It was something Hopkins was keenly aware of from his childhood in segregated Miami.
“It just gave me an instinctive sensitivity to condescension. It made me aware of how hurtful that was.”
And so the American disease doctor listened. He asked questions. No matter his inner frustrations, he kept a steady tone of voice.
Makoy Samuel Yibi, the national coordinator for Guinea worm eradication in South Sudan, says Hopkins never lost faith, even when there were outbreaks of the disease and no meaningful reduction in cases was in sight.
“You have to focus,” Hopkins told Makoy. “You can do it. Surveillance. Say it three times. Understand the importance of building a structure (for surveillance).”
In South Sudan, that meant having a presence in every community, with monitors in every village.
“We only have five villages left with reported cases,” Makoy says.
This in a country where almost every deformity was once blamed on either gunshots or Guinea worm.
Long and weary battle
The latest target date is 2020. That means next year, the Carter Center must report zero cases and it must stay that way for three years for the World Health Organization to certify eradication.
The biggest obstacle lies in Chad, a nation that was on the cusp of extinction a few years ago but is now reporting a spike in infections among dogs — 459 cases in 2015. Hopkins says the dogs get infected by eating discarded guts of fish with water fleas carrying the Guinea worm larvae.
“We don’t know yet how serious it is,” he says.
The Carter Center has been educating people to cook their fish well and not discard the fish entrails but to bury them. It’s also critical to keep infected dogs tied up when the worm starts coming out of their skin so they don’t contaminate the water.
The only two cases the Carter Center has reported so far in 2016 are in Chad. Both were in children and both were contained.
“We’ve got a real chance of eradication as far as human cases go,” Hopkins says.
The other disease on the brink of extinction is polio, which has also been inflicting pain on people for millennia. But polio is like smallpox in that it can be defeated with a vaccine.
Some scientists think of smallpox and polio as hares in the eradication race and Guinea worm as the tortoise. In that context, there could not have been a man more suited for the slow journey than Hopkins. That he has persevered in cool and steady fashion is evidence of his tenacity, his colleagues say.
“It’s just the way God made me,” Hopkins says.
His connection with nature has helped him cope with work that can be grim and draining.
When he first started working in Sierra Leone in 1968, Hopkins came across a field that had been cleared and burned after harvest. When the rains came, thousands and thousands of ground orchids sprung up from the embers.
It was the first time he’d ever seen them in the wild, so much beauty in the midst of something hideous like smallpox.
Many years later, he saw the orchids again while driving through Ghana. “Stop!” he yelled to the driver, so he could take a long look.
They were signs of hope amid the suffering he sought to end.
Hopkins is fairly certain that one day people will look back at cancer and say: What a pity that it took so long to extinguish. And they will say it, too, about Guinea worm.
“People will find it hard to believe this disease existed; that there was such a disease so terrible. They will be flabbergasted it lasted so long after we figured out how to stop it.”
That is, perhaps, Hopkins’ biggest disappointment: It has taken too long to defeat the serpent. Everything in his office reminds him of the years that have gone by.
But he’s not quitting.
Besides, he’s 17 years younger than former President Carter who, even after cancer, seems far from retirement.
“What on earth would I say to him? I’m packing it in when he’s still going strong?”
Hopkins places Henrietta back on his bookshelf. One day soon, he hopes, she will face him no longer as his nemesis but as the greatest testament to his life.