Fierce Optimism
Fierce Optimism
Fierce Optimism

Fierce Optimism

Donald Hopkins’ quest to eradicate Guinea worm disease

by Madeline Drexler
Editor, Harvard Public Health

Donald Hopkins couldn’t sleep…

It was sometime after 2 a.m., early October 1980, at the old Hotel Chantilly, in Geneva. He reached toward the nightstand and grabbed a pen and a ruled notepad—items that are always within reach—and pulled back the covers. His wife, Ernestine, was sleeping soundly beside him. Hopkins crept out of bed and tiptoed to the bathroom. He turned on the light, closed the door, sat down on a towel, and began furiously scribbling.

Two or three pages later, Hopkins had sketched a first draft of a comprehensive battle plan against a nearly lifelong nemesis: Guinea worm disease—one of the most gruesome afflictions known to humankind, but also one of the most preventable. In the 38 years since then, the worldwide campaign to eradicate this nightmare infection has pretty much hewed to Hopkins’ middle-of-the-night inspiration.

Although he hadn’t yet turned 40, Hopkins, MPH ’70, was an old hand at monumental public health pursuits. In the late 1960s, he had helped lead the successful campaign to eradicate smallpox, one of the greatest killers in human history; the campaign took just 14 years, from 1966 to 1980. Hopkins thought Guinea worm would prove equally susceptible over a similar time frame, that removing it by 1995 from its natural haunts—stagnant water in impoverished and marginalized locales—would be a “piece of cake.”

He was wrong. The counterforces of skepticism and scarce funding—but mainly what Hopkins calls “a failure of imagination”—have stymied the effort.

Still, progress has been dramatic. In 1986, when the first global eradication project was launched, there were an estimated 3.5 million cases in 21 countries across Africa and Asia. Today, the infection is endemic in only four countries: Chad, Ethiopia, Mali, and South Sudan. As of October 2017, there were 26 cases on the planet, all in Chad and Ethiopia.

For steadfastly piloting this public health crusade—first at the U.S. Centers for Disease Control and Prevention (CDC), then at the Atlanta-based Carter Center, a nongovernmental organization with a human rights focus—Hopkins has been showered with accolades. He was awarded a MacArthur “genius” fellowship. Former President Jimmy Carter, who in 1986 brought diplomatic and financial muscle to Hopkins’ endeavor, said, “There have been few heroes in my life, and Dr. Donald R. Hopkins is one of them.” A village in Nigeria bestowed on Hopkins the title “Healer of the World.”

But 26 cases is not zero, and for Hopkins, zero is the only number that counts.

“AN ABSOLUTE TENACITY”

The first time that Hopkins saw a Guinea worm was in 1958, in a college zoology textbook. The photo transfixed him: a long, slender, pale worm erupting from a woman’s arm.

One of the more torturous aspects of Guinea worm disease is that the worm can surface anywhere in the body: usually the feet or legs but also the head, the chin, the genitals, the eyes. Hopkins knows of a case where the worm emerged from under a man’s tongue. “That person starved to death,” he says, “because it was too painful for him to swallow.” In the late 1990s, Hopkins visited a clinic in Ghana where a health worker was winding multiple worms out of a man’s body. “This guy had very dark skin. And the health worker was teasing out strands of Guinea worms, which are sort of ivory-colored. It looked as if somebody had thrown a handful of spaghetti at him. Of course, he was in misery.” In 1999, a young farmer in Nigeria named Abdullahi Rabiu set a horrifying world record: 84 Guinea worms removed from his body. As Hopkins once remarked, “I marvel that people stay sane.”

For virtually his entire adulthood, Hopkins has streamlined every aspect of his life for the higher calling of eradicating Guinea worm. Even his appearance is efficiently inconspicuous. He is trim, bald, bespectacled, of middling height, and his voice is notably mild. Hopkins hates distractions and lives a technologically austere life, spurning what he calls “the burden of email” (messages are forwarded from his longtime administrative assistant at the Carter Center, and he replies to messages via the same indirect route, often in two or three words). Only a few years ago did he acquire his first cell phone.

On a bookshelf in his home office, in the Lincoln Park neighborhood of Chicago, he keeps an alcohol-filled jar with a Guinea worm coiled at the bottom, extracted in the 1980s from a patient in Burkina Faso in Africa. He calls the worm his “pet” and whimsically named it Henrietta.

A colleague once called Hopkins a “congenital optimist.” “To me, he always seems on the edge of excitability,” says William Foege, MPH ’65, a former CDC director and himself a public health legend for having devised the immunization strategy that conquered smallpox. “He sometimes is so excited about things, he can’t speak fast enough. He has this optimistic air about him because he’s excited.” Foege, who first met Hopkins 50 years ago, says, “What characterizes Don is curiosity, a moral compass, and an absolute tenacity.”

Foege adds that Hopkins possesses all the essentials to lead a disease-eradication campaign. “Don has defined the last mile consistently. He figures out the priorities and what we shouldn’t be wasting our time on. He shares turf. He is quick to congratulate the people in the field. He doesn’t take the credit for himself—ego suppression is one of the things that defines him.”

Among his public health comrades, Hopkins is also known for a set of specific phobias: snakes, bats, rats, airplanes, heights, and food poisoning. “You almost think he must have been a masochist to have decided to go into global health,” Foege says. “But do you know what his greatest fear is? Fear of failure. He had a vision, and he didn’t want to fail.”

MATERIALLY POOR, RICH IN SPIRIT

One of 10 children of Joseph Leonard Hopkins, a carpenter, and Iva Louise Major Hopkins, a seamstress, Donald Hopkins was born in 1941. His first home was in the Coconut Grove neighborhood of Miami, a haven in the early 20th century for waves of Bahamians who surged there to make a living. He recalls a vibrant and embracing Bahamian community.

“The main thing I remember from the time we were living in Coconut Grove was that I was surrounded by family,” he says. Within a tight radius of his home lived grandparents, aunts and uncles, his godmother, “and of course oodles of cousins.” On Sundays, neighbors streamed down the short side streets on their way to church. “My grandmother lived only a block-and-a-half from the front entrance to Christ Church, and I see her now walking home from church, swinging her pocketbook.”

But Miami was also ruled by “separate but equal” Jim Crow laws and ranked as one of the most segregated big cities in the United States: separate schools, separate hospitals, separate restaurant entrances, separate bathrooms, separate beaches and golf courses. The psychological legacy of growing up under segregation would carry over into his public health consciousness. “Sometimes I’d be out in a village, and I’d see people who physically reminded me of one of my relatives,” he says. “The other thing that evoked my childhood was the piety that you often see in those environments, where people are materially poor but so rich in spirit.”

Hopkins’ mother was especially influential in helping him focus beyond his immediate horizon. She set the highest academic standards and required Hopkins and all his siblings to say their multiplication tables. “She had a passion for education for all of us. She was there for every recital, spelling bee, performance, and all of the graduations: high school, college, graduate school. After she died, we found among her papers an essay that she had written when she was in school—and she had only gone to eighth grade, so she had to be very young when she wrote it. The title of the essay was, ‘Why We Must Educate Our Children.’”

Hopkins’ mother also had a prodigious memory for verse. “When we were growing up, she would quote a poem to you at the most unexpected time, and it was always very appropriate.” One of the poems that Hopkins never forgot was “Don’t Quit.” It begins:

AN ELECTRIFYING MOMENT

At 15, after his sophomore year in high school, Hopkins was selected to enter Morehouse College in Atlanta. He weighed less than 90 pounds and had to quit his paper route to go. In 1962, he graduated near the top of his class and went on to the University of Chicago’s medical school, where he was the only African-American student.

In 1967, barely 26, Hopkins joined the CDC and was dispatched to the World Health Organization’s (WHO’s) smallpox eradication campaign in Sierra Leone, the nation that then had the world’s highest rate of smallpox. He arrived in Freetown “with some trepidation,” he recalls. The next year, he was assigned to implement Foege’s new “surveillance and containment” strategy. Rather than trying to vaccinate 80 to 100 percent of each country’s population, the approach called for concentrating on the less than 5 percent of the population who had smallpox at any one time and, through rapid case finding, immunizing only individuals who had been in close contact with those infected.

It was a daring gamble. Smallpox had savaged Sierra Leone. “One of the worst outbreaks I ever saw was the summer of 1968, middle of the rainy season,” Hopkins recalls. “We had this terrible outbreak that was at least a 45-minute walk from the nearest road through the jungle. When you got there, all these people were on the ground in pain with smallpox, including an infant who had been born only a few days before. She was lying on a mat between her mother and the mother’s co-wife—both of whom also had smallpox rashes. Babies were often infected in utero and were very vulnerable after they were born. We vaccinated that baby and came back a week later and saw that the vaccination had taken and the baby survived. I vaccinated hundreds, if not thousands, of people in the smallpox campaign. But that was the most personal encounter that I recall, because that baby was so close to death.”

In 1969, less than 18 months after Hopkins’ arrival, Sierra Leone reported its last smallpox case. In a 2008 article in The Lancet, Hopkins wrote that the triumph “was electrifying.” The last naturally occurring smallpox case was in Somalia in 1977, and in 1980, WHO officially declared the disease “eradicated” (though the virus still exists in securely guarded laboratory vials for research).

“One of the nice things about smallpox was that the incubation period was only two weeks,” Hopkins says. “You could look back every two weeks and see the impact of what you had done, for good or ill, and take corrective action if it was not working. It was very rapid and very positive feedback, and it made you hungrier and hungrier.” He was already thinking about Guinea worm.

In 2010, Donald Hopkins, MPH ’70, showed children in Molujore Village, South Sudan, how to use the plastic water filtration pipes to prevent Guinea worm disease. Photo © Carter Center

BATTLING SKEPTICISM

The rationale for eradicating smallpox had been that it was easily diagnosed, there was no animal reservoir, victims transmitted the diseases for only a short time, immunity was lifelong, and there was an excellent vaccine available. Hopkins and many other veterans of the smallpox campaign wanted to apply their hard-won lessons to other infections. But they were met with skepticism and the argument that it was wiser to invest in primary health care and infrastructure—the so-called “horizontal” approach, rather than a vertical program targeting one disease.

“What Don was up against was his own peers,” says Ernesto Ruiz-Tiben, who since 1998 has served as director of the Carter Center’s Guinea Worm Eradication Program. “People in public health leadership were fatigued after the successful completion of smallpox eradication. The rigor and dedication and accountability required to drive the incidence of a disease to zero and make the pathogen that causes it extinct is exhausting. Leaders at WHO were reluctant, if not outright hostile, to the idea of another global eradication campaign—against Guinea worm disease—so soon after the end of the smallpox campaign. Many also had the view that it was not an ‘important’ disease.” As Foege puts it: “Guinea worm disease was not only neglected, it was invisible to the hierarchy, because it didn’t strike in urban areas.”

By then director of international programs at the CDC, Hopkins in his spare time conducted a freelance campaign against Guinea worm—peppering health officials with letters, producing a glossy brochure, publishing a newsletter, arranging meetings with anyone and everyone who might have leverage on the issue. The Guinea worm work, he says, was the “dessert” in his various CDC roles. (He would go on to serve as deputy director of the agency from 1984 to 1987 and as acting director in 1985.)

In 1980, at a WHO meeting in Geneva, he had chatted with a French physician who described how Guinea worm disease had recently disappeared from an area of Ivory Coast after the government began drilling wells for drinking water. The conversation vibrated with a fact that had been gnawing at Hopkins: While the United Nations, WHO, and other agencies had declared 1981 to 1990 the “International Drinking Water Supply and Sanitation Decade,” with a goal of providing safe drinking water everywhere, its leaders completely ignored the fact that the project’s success would also eliminate Guinea worm disease.

“I was astonished,” he says. “I thought, good Lord, this is something they really could do. We were handing them a target on a golden platter. The whole dynamic was reversed: We didn’t have to argue for safe water in order to eradicate Guinea worm, which would have been a very expensive intervention. That heavy lifting had already been done by the Water Decade.” It was that night or the night after that he composed his first plan.

In 1986, Hopkins had happened upon a book that at first glance might have seemed far afield: The Discovery of Sudden Infant Death Syndrome: Lessons in the Practice of Political Medicine. It described, in part, how a prominent spokesperson for a misunderstood cause could catalyze public sentiment (at that time, SIDS deaths were believed to be homicides, not tragedies inadvertently caused by the baby’s prone sleeping position). A lightbulb went on in Hopkins’ mind. He wondered passingly if the singer and social activist Harry Belafonte would consider signing on to the Guinea worm cause.

Not until April 1986 did Hopkins catch the break he needed—at a conference held by the Carter Center, a nongovernmental organization founded by former President Jimmy Carter that devoted itself to some of the most intractable issues in human rights and conflict resolution. Hopkins delivered the morning keynote address and hit hard on the Guinea worm issue. At lunchtime, Peter Bourne, chair of the steering committee of the Water Supply and Sanitation Decade, made a more pointed case for ridding the world of Guinea worm, bolstered by a horrifying set of slides. Sitting in the front row was Carter, who at the time knew little about the disease. He was riveted—and Guinea worm disease soon became the catalyst for the center’s work on a third area of engagement: neglected tropical diseases.

Not long after, WHO adopted its first resolution formally targeting Guinea worm for eradication. And the Carter Center, in partnership with the CDC and others, agreed to lead the campaign. Carter and Hopkins made a formidable tag team, both motivated by higher moral purpose and meticulously attentive to detail. (Referring to the successful 1995 “Guinea Worm Cease-Fire” in Sudan—which Carter helped negotiate and during which health workers fanned out to conduct interventions against the infection—the former president remarked, “Don knows every village that has five people with Guinea worm and who those people are.”) Soon, African ministers of health pledged their support. A chemical company donated the larvicide to kill the water fleas carrying Guinea worm larvae. Another firm donated millions of square yards of nylon materials for household water filters. The war was finally on.

THE “SILENT MAGISTRATE”

Guinea worm is both a disease of poverty and a cause of poverty. In southeastern Nigeria, a local term for Guinea worm means “silent magistrate,” because the infection can keep children out of schools and farmers from their fields. In Mali, it is known as “the disease of the empty granary,” because of its seasonal peak at harvest time and the resulting wave of starvation. There is also a psychic toll: “Little children, just seeing them terrorized—that’s something I cannot get my mind around,” Hopkins says. “You can look at a child, see them crying, know that they’re hurting, but what you can’t know is what’s going on in that child’s head.”

While Guinea worm cannot be cured or vaccinated against, it can be prevented—using classic, low-tech public health measures. Volunteers teach people to drink water only from protected sources such as boreholes or hand-dug wells, to avoid entering waterways when a worm is emerging from their bodies, and to always filter water from unsafe sources through a simple mesh fabric or a plastic drinking straw fitted with steel mesh—both methods render the water 100 percent Guinea-worm-free. Local health workers can also treat unsafe water sources with a larvicide, which kills the water fleas that carry the larvae. More expensive solutions involve providing communities with new and safe sources of drinking water.

The tools may be simple, but the process is not. “There’s no technological marvel here,” Hopkins says. “People often said to us at the beginning of the Guinea worm program, ‘This is not smallpox, you don’t have a vaccine. You’re going to have to change people’s behavior—and you won’t be able to do that.’ Well, lo and behold, it turns out if we approach people the right way and give them the information that they need, people will change their behavior—because they don’t want to have Guinea worm, either. We don’t have a vaccine to offer them, but we have something else: knowledge.”

The key to imparting knowledge, Hopkins says, is empathy. “That’s where growing up in a segregated society, as an object of segregation, was useful. The most fundamental thing is putting yourself in the position of the people that you’re trying to help—never disrespecting them, and knowing that they may not trust you or other health workers and may be unwilling to listen. Your job is to help them understand why it’s in their interest to change their behavior. What’s in it for them? It’s not seeing numbers coming down on a chart or in a table, and it’s not making people from another country feel better. It’s that this is a terrible disease and my God, we can stop it, we don’t have to keep suffering from it.

“For example, people in West Africa often thought that Guinea worm was caused by something in the blood that they were born with, and it just decided to come out on its own. You don’t directly challenge those beliefs, because you’re not going to win. Instead, try to sidestep the belief by saying, ‘Well, that may be true, but here’s what your neighbors did, and it helped them to get rid of this Guinea worm disease.’ Of course, it helps to have people whom they already respect conveying this information: traditional leaders, religious leaders, village chiefs, local teachers, local health workers, and testimonials from the people next door. Human beings will put up with a lot—until they realize that their pain is not inevitable. It’s not that they continued suffering from Guinea worm because they wanted to, but because they didn’t understand how to not suffer from it.”

In field photos from the eradication campaign, Hopkins frequently appears in a bright blue dashiki printed with drawings of people filtering their water. The sartorial cue came to him in the early 1990s after seeing cloth printed with political slogans, politicians’ pictures, and other images throughout his travels in West Africa. He jotted down the name of the cloth manufacturer and, once back home, sent the company health education materials, asking if those pictures could be printed, too, with text in English and French.

“Boy, did that idea take off,” he says. Since then, at least seven countries have followed suit, designing some two dozen different patterns that have been donned in most of Africa’s Guinea worm–endemic nations. “We wanted those simple messages to come at people from as many different directions as possible, as often as possible, everywhere. One way was to give away this colorful cloth as an incentive to the village volunteers, who became walking billboards for the program.”

One of Hopkins’ most powerful communication techniques was to meet with villagers at their drinking water sources. “Take up a bucket of that water, filter it through one of these cloth filters, and backwash that filter into a glass jar with all the stuff that’s been trapped. Then hold that glass jar up to the light. Even without a magnifying glass, you can see little things swimming around in that water. Whatever people believed about where Guinea worm came from, they do not like the idea that they’re drinking water with little things swimming around in it.”

These informal, nonacademic approaches have paid big dividends. “Someone once said to me that we should be doing more pilot studies in the Guinea worm campaign,” Hopkins recalls. “I said, no, we know that these interventions work. What we need to do is to apply them as widely as possible and then find where they didn’t work well enough. Why are people continuing to get infected? Is it because program people thought the interventions were put in place when, in fact, the health workers were lying and they did not carry them out? Or because somebody in the village was quietly persuading people not to cooperate? Or because a particular leader was not convinced?” As Hopkins is fond of saying, “Before there was epidemiology, there was common sense.”

THE LAST MILE

As of January 2015, the World Health Organization had certified 198 countries, territories, and areas, representing 186 WHO Member States, as being free of Guinea worm transmission. The latest unofficial target date for eradication is 2020. For WHO to certify that the disease has been eradicated, there must be no reported cases of Guinea worm for three years. Since the formal campaign began in 1986, the infection rate has dropped by more than 99.999 percent.

While Hopkins has excelled in defining the last mile, neither he nor his colleagues anticipated the latest curve in the road. After a decade with no reports of Guinea worm disease, Chad reported 10 cases in 2010. The source of the infections came as a shock to scientists: domestic dogs, which have contracted Guinea worm in fishing villages along the Chari River. The dogs eat raw or undercooked fish, frogs, and other aquatic animals carrying Guinea worm larvae and become infected, even though they are not the parasite’s natural host. They then spread the parasite by wading into the river. New human cases arise when people eat fish or other aquatic species that are inadequately cooked or cured.

A cruel joke? “I wouldn’t call it a cruel joke, but it certainly is a final test,” says Hopkins. “We’ve known for years that Guinea worm could infect domestic dogs, because dogs were used as laboratory animals for this infection. What’s new here is it’s happening on such a large scale.”

“It’s a game changer, but not a game stopper, because this is preventable,” adds the Carter Center’s Ruiz-Tiben. To stem the new source of infection, villagers are learning to cook their fish well and to bury fish entrails. And cash rewards of about $20 are given to owners of infected dogs if the owners tether the animals to prevent contamination of water sources. According to Ruiz-Tiben, these measures seem to be working. But dog infections aren’t the only roadblock in the final mile. Some of the last strongholds of Guinea worm disease—particularly Mali and South Sudan—are besieged by terrorism, banditry, human trafficking, and drug violence, making it nearly impossible for health workers to gain access for education and surveillance. Refugees fleeing war zones and the movements of nomadic populations multiply the challenges of tracking and containing new cases.

THE NEW NORMAL

A year after Nigerian Abdullahi Rabiu had 84 Guinea worms pulled from his body, he turned out the biggest harvest in his community and was named “Farmer of the Year.” He later volunteered to help educate his fellow villagers about how to prevent the infection that nearly killed him.

When Guinea worm is gone, villagers’ lives are transformed. As Hopkins puts it, “The kids can go to school unencumbered, not missing days. Annual crop harvests are bigger and farmers have surplus to sell. More disposable income means people are able to put tin roofs instead of thatch roofs on their houses. Some are able to make a pilgrimage to Mecca. Communities also have cadres of people who have had the experience of working in a disciplined public health program—some go on to medical school or decide to get an MPH.

“All these things you can measure,” he goes on. “But you cannot measure the transformation of people’s thinking by knowing that they don’t have to worry about the silent magistrate anymore. That becomes the new normal.”

In a 2014 article in The Huffington Post, Hopkins observed: “Smallpox eradication taught us the power of human ingenuity, but Guinea worm eradication may teach us the power of the human spirit to overcome even the most daunting of challenges.”

The Carter Center has estimated that more than 80 million cases of Guinea worm disease have been averted since 1986, at a financial outlay of about $3.47 per case averted—making the eradication campaign highly cost-effective, even when the larger budgets needed at the end of the campaign are factored in. “We will have shown that you can eradicate something without a vaccine and without a curative treatment,” Hopkins declares. “Our main tool has been health education.”

But Hopkins is incapable of premature celebration. In a recent interview, a note of dry fury infused his normally optimistic demeanor. “Why on earth did it require a former president of the United States to take up this issue to get people’s attention?” he asked. “On its merits, you’ve got an awful-appearing disease, with such terrible impact on people, their health, their agriculture, the ability of kids to go to school—and we can do something about it. Not just that, we can eradicate it.”

To be sure, part of the problem was financial; not until 2000, with a major donation from the Bill & Melinda Gates Foundation, did substantial money flow toward the campaign. A larger factor was, as Hopkins put it, “lack of empathy, lack of care, lack of perception. With smallpox, the whole world was at risk and knew it. In the case of Guinea worm, there was comfort in the fact that only rarely was Guinea worm disease imported to Europe or Japan or North America, and when it was, it was a curiosity in a hospital. There was not the kind of direct, visceral self-interest in getting rid of Guinea worm that there was with smallpox. It is, I don’t know, just the way God made people. We get focused on certain things and distracted by superficialities.”

In March 2015, while taking a morning swim, Hopkins suffered a heart attack. That August, Jimmy Carter announced that he had been diagnosed with advanced cancer in his liver and brain. As of this fall, both are doing well—Hopkins has recovered and reduced his workload to focus solely on Guinea worm, and Carter received radiation and innovative immunotherapy treatment that appears to have wiped out his cancer. At the same time, Hopkins is 76, and Carter, 93.

The year of his cancer diagnosis, Carter told CNN, “I still hope that I’ll be able to survive [to see] the last case of Guinea worm.” For his part, Hopkins says, “The heart attack was a profoundly life-altering experience. I feel more vulnerable. I feel a greater sense of urgency. Now I’m not just worrying about President Carter seeing the end of Guinea worm but me seeing the end of Guinea worm.”

Over any last mile in public health, the destination seems to recede. “In theory, the last case could have already occurred—in theory. Or the last case could occur a year from now. But there’s many a slip between what’s possible in theory and what can be made to happen when you deal with human beings,” Hopkins says. “I’m haunted, knowing that none of that is secure until we’ve stopped the last worm.”

In his scholarly writing, Hopkins likes to quote a letter that Thomas Jefferson wrote in 1806 to Edward Jenner, discoverer of smallpox vaccination: “You have erased from the calendar of human afflictions one of its greatest. Yours is the comfortable reflection that mankind can never forget that you have lived.” It seems a fitting tribute to Hopkins’ own career.

But a less rarified tribute will also do. Some seven decades after he first heard it, Hopkins can still recite the last stanza of “Don’t Quit”:

An eradicator’s anthem? “I never thought about it that way,” he says shyly. “But it certainly is. It certainly is.”