How South Sudan is ending Guinea worm disease – and building its national health system

Since gaining its independence in 2011, South Sudan has overcome poor infrastructure, insecurity, and conditions ideal for the spread of Guinea worm disease to bring the number of cases of this debilitating condition down from tens of thousands each year to four in 2021 and a single case, so far, in 2022.

This remarkable success, achieved despite regional insecurity and with little national government infrastructure, holds lessons for global health leaders working to shift behaviors and improve health outcomes in challenging environments.

Exemplars News spoke with Makoy Samuel Yibi, national director of South Sudan’s Guinea Worm Eradication Program, about how the country has achieved this progress.

When did you start working on this illness?

Yibi: When I was a young health worker in 1996, my home county, Terekeka, experienced a measles outbreak. We quickly went in with a door-to-door vaccination campaign and controlled the epidemic. But when I was going door to door, I was surprised to see that nearly every household had a case of Guinea worm. This was shortly after former U.S. President Jimmy Carter negotiated a nearly six-month long humanitarian ceasefire to allow a survey of endemic areas and provide endemic communities with water filters and other equipment. This brought attention to the problem. In my report, I mentioned the huge impact of Guinea worm. And the ministry of health leaders read my report and said, “Okay, you’re in charge of doing something about that.”

Did you think elimination was possible?

Yibi: With Guinea worm, we have no silver bullet. There is no vaccine. We have only water filters and behavior change. And when you see the magnitude of the problem, when we started there were thousands and thousands of cases in South Sudan alone, you wonder… maybe this isn’t going to be so easy. And when we started, the country was at war. There were no government structures or institutions across most of the country. For us to be successful in South Sudan, we knew our efforts would have to be community driven. And we had to fight Guinea worm village by village.

What were notable turning points?

Yibi: There were a couple of key moments. First when Jimmy Carter organized the 1995 Guinea Worm Ceasefire to allow a survey of endemic areas and the distribution of water filters. Second, in 2005, we were finally able to reach every village and assess the impact and then in the endemic areas, we could build a structure for addressing the disease. We trained community-elected volunteers in every village and established a village committee to support the volunteers. And we established a structure for supervision and support of these volunteers.

What were some key challenges and lessons learned along the way?

Yibi: In endemic areas, 60 percent of people keep cattle and are not sedentary. They live with their cattle in the bush for months at a time. To be successful, we needed to understand their movement patterns. This was key because we needed to detect cases within 24 hours of a worm emerging, to prevent the person from infecting others.

Another challenge is that during the rainy season, each village might have hundreds of water sources. We need to map each of these and treat those that were causing Guinea worm.

But perhaps the biggest challenge was trust. We needed to build trust with communities. For good reasons, people in rural areas, sometimes they don’t believe what someone from a town will tell them. To build trust, we needed to understand what the communities think about their health and what they value. And we needed to recognize that what works in one community might not work in another. So, we needed to listen. We didn’t just tell them what they must do.

How did that work? Can you give us an example?

Yibi: When you have a case of Guinea worm, we want to limit the infected person’s movement so that they don’t enter water and contaminate the water source and infect other people. But in the communities that are taking care of cattle, the infected person, if they are responsible for caring for their cattle, can’t just leave the cattle. And their communities agree that if the person is taking care of cattle, this is the most important thing for their family and community. So we can’t force them to a clinic or a Guinea worm containment center. Instead, we listened and asked them to make a plan. If their plan is to stay at home, then we have a volunteer who stays with them and cares for and monitors them. If they are in a cattle camp in the bush and need to stay there, then the volunteer stays with them there and monitors them and cares for them there. The key is that we understand their challenges and provide options for them.

Also, we have communities that cross into other countries while tending their cattle. We can’t force them to stop doing this. But we can assign a mobile team that moves with them as much as possible. We need to adapt to different situations.

Can you tell us about containment centers? What are these?

Yibi: We have containment centers in every village in affected areas. Often it is a tent. Sometimes, in areas where there are no roads, it is just a hut made of local material. The key is that when someone is infected, it is a place where the patient can stay and stay put so they don’t spread the disease. We provide food, water, a bed, and a local health worker to clean and dress their wound and provide antibiotics if the wound is infected. And we give them education about the disease. We find that they then become advocates when they return to their community. They become agents of change.

In endemic areas, volunteers are supposed to visit every household every single day to check for Guinea worm. How is this accomplished?

Yibi: In areas where people are not settled, for example, for people living in cattle camps, we have volunteers who travel with the cattle camps. These are the highest risk populations. They travel far from villages. They might live 100 kilometers from the nearest town for months and use unsafe water sources. So, we need to be sure to monitor these groups.

In farming areas, we have other challenges. Each household might be a few kilometers away from the next household. So, our volunteers must travel great distances each day. In those cases, we have large numbers of volunteers, so that each volunteer can manage their responsibilities.

How did the government of South Sudan use the infrastructure of the Guinea worm elimination effort to build the rural public health system?

Yibi: In 2005, when the war ended, we didn’t have any government systems in place in most of South Sudan. There was no functional health system in the country. Around the same time, the South Sudan Ministry of Health’s Guinea Worm Eradication Program, with funding from the WHO and The Carter Center, had succeeded in building volunteers and supervisors and a support committee for every endemic village across the country. By 2015, when the Guinea worm cases dropped to single digits in South Sudan, the government realized that less than 50 percent of the country’s population had access to any health care whatsoever – except for [in the case of] Guinea worm. We had a structure in every village for Guinea worm. So, the government recognized that the Guinea worm effort could be a foundation for a national health system that reaches rural areas.

The Guinea worm structure was resilient, with its village committees and volunteers. So they built on this. The ministry developed the Boma Health Initiative. They trained many of our village volunteers on a package of disease prevention and control services and basic first aid. So many of our volunteers became capable of delivering other services and educating their communities about other health challenges, like supporting childhood vaccinations.

By 2017, the government launched a community-based health care system, with our volunteers, many of them now trained and paid by the government, serving as front-line health workers. In this way, the Guinea worm program strengthened the public health care system in South Sudan.

What happens post-elimination?

Yibi: The last case of Guinea worm in South Sudan was one year ago. So, we are hopeful that it will not come back. But we have to remain vigilant.

(Editor’s note: in the week after this interview, one case of Guinea worm was confirmed in South Sudan. For coverage of the global elimination of Guinea worm see the Carter Center)