Eradicating Guinea worm disease

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A global campaign to eradicate Guinea worm disease is tantalizingly close to success. The parasitic infection, caused by a worm that can grow three feet long before it emerges from a patient’s body, now affects just a few thousand people per year. Almost all of the remaining cases are in Southern Sudan. Former U.S. President Jimmy Carter, who has helped lead the campaign, went there in February. The World’s David Baron was there too.

Children by their home, Lojora Village, Southern Sudan.

Jimmy Carter’s first direct experience with Guinea worm was in West Africa. He visited Ghana and traveled to a hard-hit village.

“It’s about the size of Plains, Georgia, where I live. About 500 people. And 300 of its citizens had Guinea worm.”

Now, if you’re not familiar with Guinea worm — brace yourself. It’s not a pleasant condition. You get it by drinking contaminated water. You don’t know you’ve been infected until a year later, when you develop a painful blister. Then a worm slowly emerges. It can be as much as a yard long. And it can come out through your leg, your arm… just about anywhere.

“The most memorable experience was a beautiful young woman, I think about 19 or 20 years old. And I thought she was holding a baby in her arms, and I went over to talk to her child, and I found out she was holding her right breast in her arm, instead of a baby. And a Guinea worm was coming out of a nipple of her breast. And she was in excruciating pain. We found out later that year that she had eleven other Guinea worms emerge simultaneously from her body.”

That was 1988. At the time, Guinea worm plagued millions of people in 20 countries — in Africa and Asia. Not anymore.

“We’ve gotten rid of the disease now in Cameroon, Niger, Ivory Coast, in Togo…”

Doctor Donald Hopkins launched the global Guinea worm eradication campaign 30 years ago. It started at the U.S. Centers for Disease Control, but he soon moved the campaign to Jimmy Carter’s Atlanta-based Carter Center. Ever since, the Carter Center has helped countries set up national programs to defeat the disease.

“We’ve also gotten rid of it in Pakistan and Yemen.”

Only a few thousand cases remain. And almost all of those cases are in one region of one country: Southern Sudan.

“The last Guinea worm on earth will be from somewhere close to where we’re standing right now.”

And where we’re standing is in the village of Lojora, in Southern Sudan’s Terekeka County. It’s hard to imagine a place more cut-off from the modern world. There’s no electricity, no shops, no roads. Just huts of mud and thatch scattered in the brush. A boy — naked and barefoot — herds his family’s goats.

Village chief Jakeyo Le Yong Ladu says when he was a boy, Guinea worm swept through his family.

Chief Jakeyo Le Yong Ladu.

“My mother had Guinea worm. My father had Guinea worm. My sisters had Guinea worm. Nobody could cook. Nobody could fetch water. My father was the head man of the village. When he saw that everybody had Guinea worm, he became so upset, he hanged himself. He took his own life.”

Back then, many considered Guinea worm a curse from God. No one knew what caused it, or how to prevent it. Even today, there’s no cure for Guinea worm. No vaccine. No drugs to combat it. But its transmission can be stopped if a patient is identified early and treated.

On this day, the patient is a man named Dario Mere. He’s stick-thin, in a tattered shirt. He sits on a papyrus mat, while the village watches and two health volunteers lean over his left leg.

Dario Mere awaits treatment for Guinea worm.

A worm pokes out of an open sore.

Simon Taban of Southern Sudan’s Guinea Worm Eradication program is here to supervise the treatment.

Simon Taban: “He had multiple worm.”
David Baron: “Multiple worms.”
Simon Taban: “Yeah, multiple worm. The first one was removed the day before yesterday.”

The second one is being removed today. A health volunteer gently pulls on the worm — trying to coax it out of Mere’s body.

A health worker gently pulls the worm.

“As you keep pulling it — slowly, slowly — you keep massaging it until it finally comes out.”

You don’t want to break the worm. That can leave a portion of it in the patient, causing infection and inflammation and permanent disability. So day by day, inch by inch, the treatments continue. The worm is wound around a piece of gauze. When Dario Mere’s worm finally comes out, it looks like a long strand of angel hair.

The worm, removed from Dario Mere.

Until the worm is removed, it’s critical that the patient stay away from water sources — like ponds — that locals use for drinking. If the patient bathes or swims there, the worm will release its larvae into the water, and if people then drink that water, they’ll become infected.

A poster reminds Guinea worm patients not to step in a source of drinking water.

So another critical part of eradicating Guinea worm is making sure that if people do drink from a contaminated water source, they can protect themselves.

The Carter Center and its partners distribute basic water filters — made of mesh cloth and plastic piping — that people here use to filter the larvae out. It’s simple technology.

What’s hard is distributing millions of filters to thousands of villages and making sure that everyone uses the filters every time. All it takes is one gulp of contaminated water and the goal of eradication can be set back another year. And that’s why Jimmy Carter ventured to Southern Sudan last month — to rally the local workers, and the public, for what he hopes is the final push.

While a chorus sang a welcome song, a line of white Land Cruisers approached the village of Lojora through the brush, kicking up dust. Secret Service agents stepped out, then the former U.S. President. Jimmy Carter conferred briefly with local health workers.

“What’s the main thing you’d like for me to say? Congratulate them on progress made?”

He took a seat under a tent, beside a banner that read: ”Stop Guinea Worm in 2010.” Then he stepped up to a podium planted in the dirt.

Former U.S. President Jimmy Carter in Lojora Village. A pipe filter, of the sort locals use to protect against Guinea worm, hangs from his neck.

“Thank you. Well, it’s a great honor and pleasure for me to come to this wonderful place in Sudan, Southern Sudan. We’re very grateful at the great progress that has been made here in reducing the incidence of Guinea worm. As you may know, when we first began our project in Southern Sudan, there were more than 100,000 cases that we found. And I’m sure there were many others that we could not discern at that time. Last year, we had about 2500 cases, and we believe that in the next two or three years, we’ll have zero cases of Guinea worm in Sudan.”

President Carter shook hands with health workers. He accepted ceremonial gifts. He held photo-ops with babies.

Ceremonial dancers welcome Jimmy Carter.

Then the motorcade left, and the village was back to its daily struggles. And those struggles are considerable. These people are hungry and poor — in a land scorched by decades of civil war. The war is over, but tribal fighting remains.

And there’s growing political tension — with nationwide elections scheduled for next month, and a vote on independence for Southern Sudan planned for next year. Many fear this region could spiral back into war, and that could undo the progress against Guinea worm.

Makoy Samuel Yibi heads Southern Sudan’s Guinea Worm Eradication Program.

“If we had to run away because there is fighting, or if the community is displaced and moving any direction where you cannot know where they went to, then of course you will be missing cases, and in that way there will be no chance of interrupting transmission. So that’s the worst nightmare actually for the program.”

Herder Garbino Kenyi, his ankle bandaged for Guinea worm treatment.

Of course, if war resumes, the people of Southern Sudan will have a lot more than Guinea worm to worry about. But if peace holds, getting rid of Guinea worm could help this region rebuild and prosper. Farmers will be healthier — better able to plant crops. Children will be less likely to miss school — assuming, that is, they have a school to go to.

If the global eradication effort succeeds, it’ll be thanks to many people in many countries over many years. Jimmy Carter likes to say he’s just one of those people. Of course, given his prominence, he was able to bring money and attention to the fight. He helped make the world care about an otherwise neglected disease.

President Carter is now 85 years old, and I wondered: where would he rank the defeat of Guinea worm on his list of life’s accomplishments?

Carter: “I would say very near the top.”

Baron: “Seriously.”

Carter: “Seriously. You know, we brought peace between Israel and Egypt, and we opened up diplomatic relations with China, and did some other things that I need not mention. But I think that when we see the last case of Guinea worm gone from the earth, there would be few if any other achievements of my life of which I would be more proud.”

And he’s already planning a return trip to Southern Sudan — in a few years, he hopes — to celebrate the death of the last Guinea worm.

For the World, I’m David Baron, Lojora Village, Southern Sudan.

Listen to an interview with former U.S. President Jimmy Carter

The former U.S. President talks about why he took on the fight against Guinea worm and how his upbringing and Christian faith influence his attitude toward diseases of the world’s poor. Click below to listen:

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President Jimmy Carter interviewed by The World's David Baron. Photo courtesy of The Carter Center/Louise Gubb.