Chicago (CNN)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 80 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.
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 87 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.
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.
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.