Frontline workers push Guinea worm disease to the brink of eradication

Former U.S. President Jimmy Carter tries to comfort 6-year-old Ruhama Issah at Savelugu Hospital as a Carter Center technical assistant dresses Issah's extremely painful Guinea worm wound. Photo by: The Carter Center

ABU DHABI — When Northern Nigeria was down to its last remaining cases of Guinea worm disease, Dr. Adamu Keana Sallau and his team had to get creative. As the Carter Center director for integrated health programs in the country’s Imo and Abia States in Nigeria, Sallau knew that stigma and far flung geography would made it difficult to spot infections — and every case had to be found to end the disease.

Sallau came up with a locally tailored strategy. Community members who shared information about a new case would receive 3,000 Naira ($8.50) as reward. But if the health workers found a case that hadn’t been reported, they would take a goat from the village — equivalent to about 5,000 Naira ($14) in wealth.

Usually, it took just one goat for communities to get serious about reporting, he said.

Last week, Sallau was among half a dozen other frontline health workers honored for their roles in pushing Guinea worm to the brink of eradication through the inaugural Recognizing Excellence around Champions of Health, or REACH, awards. The awards were given by Abu Dhabi Crown Prince Mohammed bin Zayed Al Nahyan at the Reaching the Last Mile global health summit last Wednesday.

There have been just 26 cases of Guinea worm in 2017 so far, down from 3.5 million cases in 21 countries in Africa and Asia in 1986. Nigeria, the most endemic country, had 650,000 cases at its peak, before dropping to zero in 2013.

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If Guinea worm is eradicated, it would be just the second disease after smallpox to disappear from the planet. The story of that eradication is one of individual communities like the ones that Sallau spent three decades of his life visiting. He and other health workers took basic public health education messages and shaped them around local conditions, beliefs, and narratives.

Dr. Nabil Aziz Awad Alla, a REACH honoree for his work as former national program coordinator for Guinea worm disease eradication in Sudan’s Federal Ministry of Health, summarized the keys to eradication success so far: “Number one, political support is important. Number two, you need strong and able leadership. Number three, all such programs should be owned by the community,” he told Devex.

A hot devil

Guinea worm disease weaves through much of human history, taking on names and local meanings as diverse as the countries it afflicted. The parasitic infection occurs when humans drink contaminated water. The worm enters the body and grows up to several meters long, before emerging through a painful burst in the skin. Patients are lured by burning pain to place the infection into the water, where the worm re-enters the water supply.

The Carter Center began spearheading the efforts toward eradication in 1986, including with a donation several years later from the United Arab Emirates’ leader Sheikh Zayed Al Nahyan. While there was and still is no vaccine or treatment for the disease, basic public health education can break the worm’s life cycle, eliminating it from water supplies.

Doing so, however, required shifts in basic community behavior that were not always an easy sell. Communities needed to filter their water to avoid drinking the parasite, and then avoid the water supply altogether when they had an active infection.

“At the beginning, most of the communities never agreed [to treatment],” Sallau said. Some areas of Nigeria, for example, believed that the drinking water supply was sacred and should be left untouched. Others simply disbelieved that an infection that had existed for generations could simply disappear.

“But gradually with health education and building up trust and communication with the communities, we were able to put interventions in place,” Sallau said. Among the keys, he said, was to reach out to traditional leaders and seek their support initially.

In South Sudan, community mobilizer Regina Lotubai Lomare Lochilangole, another REACH awardee, wrote songs explaining Guinea worm to fellow residents and warning about the dangers of not filtering water.

“The men in South Sudan don’t listen to women, so it was a big challenge” to spread the message, she recalled. But results started to convince the skeptics; as caseloads fell, “people now recognize whatever I say.”

Political support

As with public health education, Guinea worm eradication efforts have operated on the principle of going to people where they are. Getting political leaders on board has been vital.

“There needs to be that strong political support for what we’re doing,” Carter Center Vice President for Health Programs Dean Sienko told Devex. “When you have a strong national program, tremendous things can happen. … We have had presidents of countries and ministers of health out in front of their populations, saying we need to combat these diseases.”

Today, the Carter Center and other partners support local health ministries, but always make sure the program is country-owned and operated.

In Sudan, another endemic country, political backing proved critical to tackling the disease between the federal north and the then-autonomous south. In the late 1990s, Awad Alaa and the ministry of health signed a memorandum of understanding with their counterparts in the south, allowing them to coordinate their work with Carter Center support, he said.

Political leaders can also give the necessary backing and legitimacy for community health workers to adopt and adapt the fight to their own contexts.

Success, said Sienko, “often gets down to the village level.”

Peace and security

More than three decades after the eradication campaign began, the Carter Center now says just one thing is needed to finish the job. “Peace and security,” said the center’s Guinea worm eradication Director Ernesto Ruiz-Tiben at the Reaching the Last Mile Summit last week in Abu Dhabi.

The first “Guinea worm ceasefire” was arranged in Sudan in 1995, when Awad Alla invited President Omar al-Bashir and former U.S. President Jimmy Carter to a summit on the disease. Agreeing to halt conflict between south and north Sudan, the initial three month ceasefire “was really a good chance for us to start proper disease surveillance in the country,” he recalled. The agreement worked so well, in fact, that it was renewed for a subsequent three months.

Today, many of the last cases and affected areas are in regions of turmoil or insecurity, where ongoing surveillance and monitoring is difficult or at times impossible. South Sudan, for example, hasn’t witnessed cases yet this year, but health campaigners are still cautious in their optimism, worrying that the civil war there may have left cases unspotted.

In Nigeria too, conflict has complicated health work. Militants in the country's north, including Boko Haram, set up checkpoints on the way to affected villages. Sallau worked to negotiate with local leaders to let Guinea worm staff pass even when other wouldn’t be allowed, he said.

Awad Alla worked intrepidly throughout Sudan’s myriad conflicts, something he told Devex is increasingly the calling of frontline health workers. “You should be available and prepared for very extreme hardship conditions,” he said. “Otherwise, it will not work.”

Read more Devex coverage on neglected tropical diseases.

About the author

  • Elizabeth Dickinson

    Elizabeth Dickinson is a former associate editor at Devex. Based in the Middle East, she has previously served as Gulf correspondent for The National, assistant managing editor at Foreign Policy, and Nigeria correspondent at The Economist. Her writing also appeared in The New Yorker, Wall Street Journal, New York Times, Politico Magazine, and Newsweek, among others.