The Daily Populous Tuesday December 31st, 2024 morning edition
Authored by npr.org and submitted by bostonstrong781

Jimmy Carter took on the awful Guinea worm when no one else would — and he triumphed

Enlarge this image toggle caption Louise Gubb/Carter Center Louise Gubb/Carter Center

Jimmy Carter took great pride in pointing out that the United States didn't start any new wars during his term as president. But after he left office he did launch a war against "neglected" diseases — diseases in far-off lands that most Americans will never suffer from and may not have even heard of. Diseases like lymphatic filariasis, trachoma, river blindness, schistosomiasis ... and a nasty little bug called Guinea worm.

Carter died at the age of 100 on Sunday. One of his lasting legacies will be how he championed the cause of global health.

"He really put Guinea worm and other neglected diseases on the map," says Adam Weiss, director of the Guinea Worm Eradication Program at the Carter Center. "It's important to reflect on what kind of special ingredient President Carter brought to the campaign. It's not only his power of persuasion, his ability to convene people, but really kind of inspiring and motivating people in a time when no one talked about neglected tropical diseases."

Because of his work, the world is incredibly close to wiping out Guinea worm disease. "Millions of people have been touched by and have better lives because of President Carter," says Simon Bland, CEO of the Global Institute for Disease Elimination.

When Carter got involved in Guinea worm eradication in 1986 there were 3.6 million cases. Now, nearly four decades later, that number has plummeted. Between January and early December 2024, there were just 11 human cases of Guinea worm reported worldwide. The Carter Center notes that final figures for 2024 won't be available until next year.

Guinea worms are spread through contaminated drinking water and eating undercooked fish. The female worms, which can be up to 3 feet long once they mature, cause incredibly painful, open blisters usually on the infected person's lower legs and feet – through which the worms emerge. It can take a toll for weeks or months, and sometimes permanently, leaving the individual unable to support a family.

And if someone with Guinea worm has contact with water – perhaps to cool the burning pain caused by the worm's emergence – the worm will release tens of thousands of baby worms, contaminating the whole body of water.

The effort to end this disease did not rely on high-tech methods. Kelly Callahan, a public health worker who spent years fighting Guinea worm disease in southern Sudan with the Carter Center, says: "Guinea worm disease has no cure, no vaccination, basically the entire eradication effort is built on behavior change."

That's meant teaching people in vulnerable areas to filter their water and giving them the low-cost tools to do so.

Other strategies included providing access to safe water supplies; better detection of human and animal cases; cleaning and bandaging of wounds; preventing infected people and animals from wading into water and the use of a larvicide to kill the worms.

Case numbers attest to Carter's success

"I would like to see Guinea worm completely eradicated before I die," Carter said at a press conference in 2015. While that didn't happen, for a while it did look as if the last Guinea worm was going to die before the 39th U.S. president.

Then a few years ago, scientists discovered that the parasite was spreading among stray dogs in Chad – and that baboons in Ethiopia were also carrying the parasite. This long-overlooked reservoir of the worms was a setback for the global eradication program and showed that killing the last guinea worm was going to be harder than previously thought.

What's more, as the number of cases has dwindled, new challenges have emerged. In 2018, Guinea worm disease was found in Angola, a country not known to have cases in the past.

As a result, in 2019 the World Health Organization pushed back its expected eradication date for the disease a full decade from 2020 to 2030.

Researchers are now looking for a treatment for infected dogs, and public health workers have turned to new interventions, like paying people cash to report infected animals.

Nonetheless, Carter's campaign has been remarkably successful.

Enlarge this image toggle caption Wes Pope/Chicago Tribune/MCT via Getty Images Wes Pope/Chicago Tribune/MCT via Getty Images

A problem no one else would tackle

In an interview with NPR in 2015, Carter recalled the origins of his crusade. Carter's former drug czar, Peter Borne, was working on a U.N. initiative called the "Freshwater Decade." Borne came to the Carter Center to talk about overlooked diseases spread from "drinking bad water." One of them was Guinea worm.

"The main reason he [Borne] came to the Carter Center was because he couldn't get anyone else to tackle this problem," Carter recalled. "It's a despicable disease. And it was in such remote villages that no one wanted to take on the task. So we decided to take it on." That was in 1986.

The late Dr. Paul Farmer, founder of Partners in Health and a champion of global health causes, spoke to NPR in 2019 about Carter's efforts. Farmer said that the former president deserves much of the credit for pushing Guinea worm to the brink of extinction.

Smallpox, Farmer said, is "the only human disease [that's] ever been eradicated. And if ... Guinea worm is right behind, that's going to be thanks to Carter."

Carter was relentless in demanding that people pay attention to diseases that primarily affect poor people in remote parts of the world. And that's a tremendous challenge. It's not easy to keep people committed to action at every level of an eradication drive, Farmer said.

"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," Farmer said. "Carter's had to sweet talk all those people. And that's something that's been very inspiring to many of us."

Enlarge this image toggle caption AFP/Getty Images AFP/Getty Images

Christopher Plowe is adjunct professor of medicine at the University of Maryland School of Medicine. He agrees that Carter's advocacy has helped governments and public health agencies around the world stay focused on eradicating Guinea worm disease. The Carter Center has pitched in, too, investing about $500 million since 1986.

"I think we should be optimistic that it is achievable," says Plowe. "I think we shouldn't be overly optimistic about how quick it's gonna be."

Guinea worm was just one of the targets of Carter's war. Onchocerciasis, also known as river blindness, has been eliminated from most of the Americas and dramatically reduced in Africa due to the work of Carter and the Carter Center.

Major inroads have also been made against other neglected diseases including lymphatic filariasis, which causes horrific swelling of the legs and genitals.

Those who know Carter well say it was his upbringing in an impoverished part of the South that left him with a strong sense of self-reliance, self-sacrifice and a duty to help others.

Enlarge this image toggle caption Bill O'Leary/The Washington Post via Getty Images Bill O'Leary/The Washington Post via Getty Images

Born in Plains, Georgia, in 1924, he stayed close to his roots, returning home after his Navy career to run the family's peanut farm.

Church was a central part of his life in Plains – he taught Sunday school there into his 90s — and friends say his Christian faith drove him.

"He did what he did out of a love for mankind," says Linda Fuller Degelmann, one of the co-founders of Habitat for Humanity, which counted Jimmy and Rosalynn Carter among their many volunteers, hammering nails by day and sleeping in bunk beds by night. The Carters worked on Habitat projects in 14 countries. "He was a true, true humanitarian and a lot of the drive comes from his Christian understanding of love," says Degelmann.

Sam Whitehead is a correspondent for Kaiser Health News who is based in Atlanta.

Phonemonkey2500 on December 30th, 2024 at 19:14 UTC »

Dracunculis medelliniasis. The red devil of Medina.

What’s most frightening is that despite our closeness with eradication, evidence is mounting that the worm has evolved to mature and now has a canid reservoir in nature. This essentially eliminates the possibly of eradicating it, since there will always be another species hosting it, one that cannot notify anyone that it has a sore desperate to get in the water.

toasters_are_great on December 30th, 2024 at 19:02 UTC »

I really hope for everyone's sakes that he outlived the dracunculiasis species, or at least human infections by it. Looks like no recorded human cases since August.

Time will ultimately tell, but regardless of that what a great legacy.

Wandering_Scholar6 on December 30th, 2024 at 14:58 UTC »

Guinea worm is an extremely painful and debilitating disease.

As often happens with efforts to target disease in undeserved (edit: I meant under served) communities, since many of the guinea worm eradication efforts focused on access to clean water and basic Healthcare, there have been a lot of unintended benefits beyond the near eradication of the parasite.

As they neared total eradication, the behavior of the guinea worm either changed or previously unnoticed behaviors were documented for the first time. It began to infect non-human populations, like dogs, in high numbers, making efforts to eradicate it more difficult.

This pushed back estimates for when total eradication could be achieved, but it's still looking possible in the very near future. (It may be difficult to tell when it happens as the last cases are most likely to occur far from medical care and infrastructure that allows for accurate reporting of said cases)