The Statesman vs. the Fiery Serpent

A Game Changer

Donald Hopkins and colleagues at CDC began trying to drum up interest in fighting Guinea worm in the early 1980s. However, the former deputy director and then acting director of the CDC had little success generating support or funding to wage a campaign against a disease most people had never heard of, that occurred in the most desolate of places.

“We started looking around for a celebrity who could bring attention to the cause,” says Hopkins, former director of health programs at The Carter Center and current special advisor for the Guinea Worm Eradication Program. “We were actually thinking about trying to get Harry Belafonte. But then President Carter got involved, and it was a game changer.”

For his part, Carter adopted the cause shortly after he and his wife, Rosalynn, in partnership with Emory, established The Carter Center, a nongovernmental, non-profit dedicated to “Waging Peace. Fighting Disease. Building Hope.”

Carter wanted his center to focus on areas others were ignoring, and when a friend and former member of his presidential administration told Carter about Guinea worm, he was interested. When he traveled to a small village in Ghana where many of the residents were incapacitated due to Guinea worm, he grew indignant. Among the afflicted villagers was a young woman whom Carter thought was holding her infant. However, when he went to greet the baby, he realized she was holding not her infant but her hugely swollen breast, from which a thin, white worm was emerging. 

Carter took up Guinea worm eradication as a personal mission and made it a flagship program of The Carter Center. Today, the center’s Guinea Worm Eradication Program, which includes a large number of Emory alumni, is but one of the center’s programs targeting neglected tropical diseases. 

“Guinea worm was a disease no one else was willing to tackle—it was ignored by governments and NGOs alike because it was too obscure and afflicted only the world’s most forgotten people,” says Kelly Callahan, an alumna of the Rollins School of Public Health and director of The Carter Center’s Trachoma Control Program who previously worked in the Guinea worm program. “That’s precisely why President Carter decided to take it on.”

That said, Callahan and other Carter Center officials are quick to point out that each country’s Guinea worm program is run by its ministers of health. The Carter Center works closely with government officials to provide technical guidance and logistical and financial support.

The Carter Center team knew getting safe water to far-flung, isolated villages was going to be too expensive, too political and take too long. Instead, the center embraced the option of teaching people in vulnerable areas to filter their water, giving them the low-cost tools to do so.

The challenge was accelerated by Carter’s astute understanding of global politics, connections and access to leaders across the world, as well as personal strength of character.

Carter used his international clout to arrange meetings with the leaders of countries where Guinea worm was endemic and often had to educate them about the problem. When he visited Pakistan in the early days of the campaign, the president and the minister of health had never heard of Guinea worm and didn’t know it existed in their country. (Pakistan became the first of the remaining countries with endemic Guinea worm to eradicate it in 1997.)

Not content to only meet with presidents and ministers of health in capital cities, Carter ventured into the most remote villages to see the work firsthand. He convinced some leaders to accompany him to areas they had never visited. 

And he used his influence to convince countries and corporations to take up the charge. Carter persuaded large companies to create, manufacture and donate the specialized cloth needed to filter water, portable filter pipes (Guinea worm “straws”) that could be worn around the neck, and larvicide for targeted bodies of stagnant water.

“It’s not possible to overstate President Carter’s impact on Guinea worm eradication,” says Adam Weiss, alumnus of Emory’s Rollins School of Public Health and director of The Carter Center Guinea Worm Eradication Program. “He made inroads with foreign leaders through his diplomacy. The fact that he actually traveled to the more remote villages made such an impact, not only on the villagers but on the health workers and leaders—they knew he meant business. And he was able to get donations to a cause no one had supported before.”

As critical and influential as Carter has been to the eradication efforts, Weiss and others on the eradication team acknowledge that the real work happens on the community level. Health workers from the national program and often The Carter Center worked to train hundreds of thousands of local health workers and village-appointed volunteers in their communities. Since the start, health education and training has taken place in more than 23,000 villages across in 21 countries in Africa and Asia.

The volunteers go from dwelling to dwelling or visit farming plots or moving groups, using picture books, skits, stories and songs to educate their neighbors about how Guinea worm is contracted and how to prevent it.

They demonstrate the ways to  properly filter all drinking water, such as using a pipe filter or fitting the cloth filters snugly over a bucket or large clay drum used for household water storage. They explain why people who have a Guinea worm need to stay out of any water sources, and if someone has already gone in the water, they make sure larvicide is swiftly added to that source to prevent transmission. They report anyone who shows signs of an imminent or emergent worm so the individual can be monitored and taken care of at containment center if they prefer.

The containment centers can offer faster, more sanitary worm extractions, along with meals, a sleeping mat, access to safe water and space for dependents. Once the worm is extracted, the person can depart with the bed mat and sheet, and perhaps a bag of sorghum to compensate for the time they missed out on working.

“We [Carter Center staff] provide the tools and the support, but the village coordinators and volunteers are the ones who were eradicating Guinea worm,” says Sarah Yerian, an alumna of Emory’s Rollins School of Public Health and senior associate director of the Guinea Worm Eradication program. She worked in South Sudan first as a technical advisor, then as a regional coordinator, and later as The Carter Center country lead. “I’d do whatever I could. When I was checking in on one of the villages in my territory, I’d hike out into the fields and gardens if it was planting season. I’d pick up a hoe and do some planting so the woman could sit and talk to the volunteer, who did all the education about Guinea worm and its prevention.”

In places where larger household water filters weren’t feasible, such as populations displaced by conflict, The Carter Center borrowed an idea from the Tuareg, a nomadic tribe in West Africa. These tribesmen cut up the larger household filters into smaller bits and tied them to the end of hollow reeds, using them as straws to suck water through. The Carter Center created a more durable prototype patterned after these hand-made devices and added a string so it could be worn around the neck. In 2001, more than 9 million pipe filters were distributed in southern Sudan, which was the largest public health intervention at the time. The design was further refined and manufactured with help from the Danish company Vestergaard. The portable pipe filters have since been distributed in all endemic countries.

Overcoming Obstacles

The path to eradication has been anything but smooth. Ghana had been making significant progress when a new president who did not prioritize Guinea worm prevention efforts came to power. For about 10 years, the number of cases remained stagnant, and local leaders became complacent. Then a big outbreak sent the numbers soaring, erasing years of progress. Carter visited afflicted villages and was so frustrated by the reversal that he threatened to rename the plague Ghana worm. His visit re-energized the program, and Ghana was declared Guinea worm free in 2015.

War posed another roadblock. In 1995, Carter used his diplomatic ability—including the threat to publicly shame the country’s leaders in a CNN press conference he called for that reason—to help negotiate a six-month-long cease-fire in Sudan between opposing sides that had been engaged in a brutal civil war. The cease-fire, the longest humanitarian cease-fire in history at the time, allowed health workers to access previously inaccessible areas to distribute medicine and preventative health measures going beyond just Guinea worm. In addition to distributing more than 200,000 cloth filters to about 2,000 endemic villages, health workers delivered treatment and education to prevent river blindness, another neglected tropical disease. They also immunized an estimated 100,000 children against measles and polio.

Today, conflict and insecurity in places like Mali, South Sudan, and Ethiopia means people can be displaced and delivery of supplies interrupted. “The benefit of being community-based and having nearly 100 percent of your local staff and volunteers native to that country is that even if people are displaced or put on lockdown temporarily, the staff and volunteers are among them, continuing to teach and monitor,” says Weiss. “That makes the system very resilient.”