The Carter Center’s Leadership in the Guinea Worm Eradication Program
By Charlie Euchner
Special Projects Editor, New America
THE CHALLENGE: The hellish dracunculiasis (aka Guinea worm disease), which has no vaccine or medical treatment, has caused millions to suffer in poor and isolated communities in sub-Sahara Africa.
THE MISSION: Eradicate the disease.
THE MODEL: The Carter Center has coordinated and supported a range of partners to implement interventions to prevent the spread of the disease.
When Jimmy Carter was president of the United States, an aide named Peter Bourne talked to him about addressing a hideous affliction in rural African communities. Dracunculiasis, or Guinea worm disease, caused crippling pain and disability in its victims. As president, Carter focused on issues related to American interests. He declined.
In 1984, Bourne, now a health official at the United Nations working on an initiative called Freshwater Decade, again asked Carter to take on the disease. The former president had, in 1982, started the Carter Center, a nonprofit organization committed to reducing human suffering and strengthening human rights worldwide. One of the organization’s priorities was fighting neglected diseases. This time, Carter said yes.
Because the populations affected by dracunculiasis were poor and isolated, no national government or health organization had ever launched a substantial effort to eradicate the disease. No vaccine existed or was in development. Prevention depended on keeping people from coming into contact with water sources infected by the worm. But that was difficult because it required people to change entrenched behaviors and customs.
By 1986, the Carter Center launched the Guinea Worm Eradication Program and began work with governments, community leaders, and local stakeholders. Across Africa, the Carter initiative has coordinated a wide variety of community-based efforts to eradicate the disease.
When the Carter Center formally started its work, 3.5 million people in 21 countries suffered annually from Guinea worm disease. In 2022, only 13 cases were documented worldwide. Guinea-worm disease was on its way to becoming the second disease to be eliminated (smallpox was eradicated in 1980).
The Problem
Dracunculiasis appears to be as old as civilization itself. The disease has been found in the calcified remains of a 3,000-year-old Egyptian girl’s mummy. According to the Carter Center, “the fiery serpent” in the Old Testament refers to the disease.
The disease originates when the Guinea worm releases larvae in stagnant water. The larvae infect microscopic crustaceans called copepods. When humans drink water or eat undercooked fish containing the copepods, the crustaceans release the larvae into the intestine. Those larvae mate, and the female offspring grow into meter-long worms resembling long pieces of spaghetti. A year after first entering a human host, the worms seek to exit the body by burrowing through the skin—and, in the process, creating awful wounds and excruciating pain, usually in the legs or feet.
To mitigate the burning pain, an infected person often plunges the wound into a pool of water. But that worsens the problem by allowing the worm to release its larvae into the water and restart the infection cycle.
In addition to the debilitating and painful wounds, victims also suffer fever, nausea, diarrhea, and vomiting. Some victims become permanently disabled and, in rare cases, die. An outbreak can ravage an entire village and shut down its economy for months.
“It’s one of those problems that once you see it, you can’t unsee it,” said Adam Weiss, the Guinea Worm Eradication Project director at the Carter Center. “Even some of the most stoic men in South Sudan, this brings them to their knees. They cry. They don’t want to admit it, but they do. It’s something you can’t walk away from.”
Once infected, the only treatment is to extract the worm slowly, an inch a day. Dripping water on the wound tricks the worm into leaving the body more quickly; caretakers then use a stick to pull out the worm. The trick is to work slowly. If the worm breaks, the part remaining in the body could cause fatal infections.
The Solution
To eradicate Guinea-worm disease, a community must prevent people from coming into contact with water that is infected with larvae. But many people need access to filtered water sources. Because a whole year passes from exposure to contaminated waters and the worm’s emergence through the skin, victims often attribute the disease to other causes. They are unaware that water is the source of the ailment.
The Carter Center has identified four critical interventions:
- Eliminate all contact with contaminated water and food and prevent people from using contaminated water sources for drinking, cooking, bathing, and recreation.
- Filter or treat existing water supplies. Provide people with water filters or add larvicide to water sources.
- Create new clean water supplies. Build freshwater wells that are not susceptible to contamination.
- Prevent infected persons from contaminating a water source. Keep victims from soaking their worm wounds in water sources.
These interventions rely heavily on behavioral change. They educate villagers on how the disease is spread and convince them to adopt the interventions. But only some entities can make that happen. To be successful, the Carter Center has acted as a hub for a diverse set of community leaders and volunteers, healthcare professionals, and politicians.
Partnerships
The Guinea Worm Eradication Program coordinates its partners – from heads of state to villagers – to implement interventions. For decades, Carter himself met with heads of state and health ministers of countries ravaged by the disease, including Angola, Cameroon, Chad, Ethiopia, Ghana, Kenya, Mali, Nigeria, Senegal, Sudan, Yemen, India, and Pakistan. Using his prestige as a former American president, Carter worked to obtain clearance to establish eradication programs in each country.
Program staff have collaborated closely with national ministries of health and local public health authorities, whose support was necessary for operating and implementing interventions.
Support has also come from international humanitarian and global infectious disease organizations such as the World Health Organization, UNICEF, and the U.S. Centers for Disease Control, who have been core partners in the program. They have provided expert guidance, case monitoring, supplies and money, and international certification of disease eradication.
Corporate partners and philanthropic organizations have provided funding and other resources. Carter enlisted the help of Edgar Bronfman, then the CEO of Seagrams, to use his position as a board member of DuPont, a chemical company, to develop cheap cloth filters that could be used to treat contaminated water. BASF, a German chemical company, has donated larvicide.
The most critical set of partners has been community leaders, grassroots organizations, and local volunteers. Since the start of the program, some 300 Carter Center workers have organized villages and settlements to enlist and coordinate these stakeholders. Over the years, thousands of people have contributed to the effort—including volunteers from other humanitarian organizations such as the Peace Corps and local community members.
Building Trust to Change Behavior
Volunteers and local stakeholders have performed a variety of roles. They have poured a larvicide into ponds; distributed simple water filters for home and business use; prevented infected persons from contaminating water sources; helped victims gather water; reported cases of infection; and worked in clinics and treatment centers.
The Guinea Worm Eradication Program has provided volunteers with modest rewards, such as small cash payments and t-shirts. Volunteering brings prestige in the community and often opens new employment opportunities. Working with the Carter program, volkunteers have set up treatment centers where victims could get care. Ordinary people have gotten gotten training in health care, which they can use to serve their communities and build a career.
In some cases, the program has built wells, which cost around $10,000. But many villages lack the suitable locations for wells. Preventing the spread of the disease requires enlisting the cooperation of the entire community to change its behavior.
Carter Center staff moved into the field for months or years and developed personal relationships with the people there. “You have to build trust,” said Weiss. “And that requires not just one visit from President Carter or the minister of health. It takes all of it happening. It doesn’t have to be perfect but it has to be systematic.”
Since a full year passes from exposure to contaminated waters and the emergence of the worm through the skin, victims often attribute the disease to fate, witchcraft, or the uncontestable will of God. That often fosters a fatalist attitude about the disease.
“The biggest challenge is just helping people to understand that they don’t have to continue suffering from this infection,” said Donald Hopkins, a special advisor to the project, in an interview with the Canadian Broadcasting Company. “Once you get their trust by respecting them and showing empathy … things begin to change. And after that, it begins to snowball.”
When elders claim that the disease comes from juju and hexes—and not foul waters—workers need to reason with them on their own terms. In a conversation with a Muslim elder, one worker quoted the Koran’s description of water as a gift and a life force. He asked simply: Shouldn’t water be free of disease-ridden worms? Rather than arguing on the basis of science, the organizers engage locals on the basis of their faith and values.
Elders, faith leaders, and village heads have played a critical role. Their credibility and status enable them to educate community members and persuade them to comply with the interventions.
Prominent national figures also have visited villages to promote the program. General Yakubu Gowon, who led Nigeria from 1966 to 1975, visited communities to persuade people to cooperate with healthcare workers.
Former President Carter has always set the vision and demonstrated the tenacity needed to win the fight. He focused public attention on the disease, raised funds, advocated, and directly intervened to persuade a wide range of stakeholders to cooperate.
“When you take on a problem like this, like Guinea worm, you have to sweet talk the ministry officials, the political figures, the nurses, the doctors, the community activists, the farmers, the people who are…most at risk,” said Paul Farmer, a global public health leader, in a 2023 interview with NPR. “Carter’s had to sweet talk all these people. And that’s something that’s been very inspiring to many of us.”
When cajoling was not enough, Carter used more coercive tactics. When the prime minister of Ghana resisted making the disease a health priority, Carter told him he would begin to call the disease the “Ghana worm.” The Ghanaian leader made the disease a priority, and within years, it had been eradicated in the country.
As president, Carter won his most significant victories with his relentless attention to detail and negotiation. In the Israel-Egypt peace talks at Camp David, the ratification of the Panama Canal Treaty, and the Iran hostage crisis, Carter committed to a long-term bargaining process. That relentless approach has been made part of the DNA of the effort to eradicate the Guinea worm disease.
Intense surveillance is essential in remote and itinerant communities. As the disease neared eradication in 2023, 8,000 to 9,000 villages were under daily surveillance. Chad, South Sudan, and Mali each had more than 2,000 villages under daily surveillance.
The Carter Center and its workers must constantly make difficult decisions about where to allocate scarce resources. At a project drilling wells in South Sudan, men on motorcycles asked if the crew would “please, please, please” drill a well in their village. “We had to say no,” said Lynn Malooly. Scarce resources had to go where they would do the most good.
Complications
To succeed, the Guinea Worm Eradication Program has constantly adapted to unexpected challenges—including outbreaks of war and the spread of the disease to dogs and cats.
In Sudan, one of the world’s poorest nations, only 41 percent of the population has easy access to clean water. Sudan’s disease had the world’s highest incidence of dracunculiasis, with three times as many cases as all other countries combined.
Sudan was also considered the most dangerous country in the world for aid workers, owing to a civil war that lasted from 1983 to 2005. The violence prevented Guinea Worm Eradication Program workers from accessing villages for years.
In 1995, Carter personally negotiated a six-month ceasefire between the two warring factions. The break in fighting allowed program workers to survey villages and deliver filters and other disease-prevention supplies.
A second unexpected challenge was the rise of dogs and cats as disease carriers. In the past, scattered disease cases had been found in dogs and donkeys. Now, after years without any animal cases, the ailment was suddenly discovered in stray dogs in Chad. At first, the Carter Center’s team and its allies did not notice. “You don’t see what you’re not looking for,” said Weiss.
How much did the dog problem matter? At first, the Carter team and health experts could not answer that question. After all, the program’s purpose was to eradicate the disease in humans, not animals. But as the number of cases in dogs increased, the Carter team adopted a “whole health” approach, expanding the problem definition from waterways and villages to include dogs and cats.
Ultimately, investigators concluded that the dogs contracted the disease by eating fish entrails. Dogs were not known to transfer the disease to humans, but they could leave the larvae in people’s water. Eventually, the Carter team developed a three-pronged response: First, keep dogs away from water. Second, keep dogs away from fish entrails. Third, try veterinary deworming drugs to see if they make a difference.
The effort required sustained discussions and planning with villagers. Dogs play a vital role in farming, hunting, and protecting the home and work. Sometimes, tethering dogs to keep them away from water sources made sense. The program began offering cash rewards for reporting infected animals and tethering dogs.
By 2022, infections in animals declined by 21 percent. Chad reported infections in 605 animals, Mali in 41, Cameroon in 27, Angola in seven, Ethiopia in three, and South Sudan in one.
The End Game
The Guinea Worm Eradication Program has been a remarkable healthcare and community-building success. When the program began in 1986, 3.5 million people in 21 countries suffered from Guinea worm disease annually. By 1990, the number of cases worldwide fell to 623,579, and by 2000, to 75,223. By December 2022, only 13 cases were documented worldwide.
Most modern public health triumphs—such as eradicating smallpox or limiting the spread of polio, tuberculosis, or HIV—are won with breakthrough vaccinations and treatments. The Guinea worm disease could be eliminated without a vaccine or substantial financial investment. Instead, the Carter Center gradually and systematically built dynamic partnerships and nurtured grassroots public health solutions.
Besides relieving suffering and disability, ridding communities of dracunculiasis has also enabled economic and social development. With the disease at bay, farmers could return to the fields, and children could go to school. Improved water supplies not only improved health but also improved farm production. Education about disease transmission prepared villagers to confront other diseases that could endanger their health and well-being.
A 2013 study by Kelly Callahan and colleagues found widespread benefits beyond the eradication of the disease. “Eradicating Guinea worm disease has become a powerful, broad-based ‘engine for development,” said Kelly et al. “The prevention of NTDs [neglected tropical diseases], and their cost-effective interventions, fuels long-term economic growth and development, and human advancement. The effort to eradicate [Guinea worm disease] is considered one of the most cost-effective health interventions available.”
Fighting the Guinea worm has also boosted local healthcare capacity. Community surveillance systems for monitoring dracunculiasis cases have been used to track other diseases, including tetanus, lymphatic filariasis, and leprosy. In South Sudan, where less than half of the population has access to healthcare services, volunteers have been trained in basic healthcare skills to provide care for other ailments.
Women have played a prominent role in community organizing and treatment. Zanib Adam, the coordinator of hundreds of Red Cross volunteers in Ghana, notes: “When a woman coach leads a meeting, other women are more likely to speak up to ask questions and report problems. When a man leads a meeting, women are too shy to say anything.”
In Ghana, for example, the program has enlisted more than 6,200 women as Red Cross volunteers in teams of 10 to 12. These teams were deployed to different villages to implement interventions.
In 2015, Jimmy Carter was diagnosed with brain cancer. He set a personal goal to outlive Guinea worm disease. But he might not achieve this goal. In 2019, the World Health Organization changed its projected goal for total eradication from 2020 to 2030. Carter entered hospice care in February 2023.
“It’s going to be a slow roll to get to zero,” Weiss said. “If we take our foot off the gas in terms of trying to accelerate getting to zero and providing support to those communities, there’s no question that you’re going to see a resurgent Guinea worm. We’re going to make progress, even if it is not as fast as we all want it to be, but that progress continues.”