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

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 launched 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 disease caused by a nasty little bug called a Guinea worm.

Guinea worms are spread through contaminated drinking water and eating undercooked fish. The female worms, which can be up to 3 feet long once 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 some people unable to support a family.

If someone with Guinea worm has contact with water — perhaps to cool the burning pain caused by a worm’s emergence — the worm may 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. “Guinea worm disease has no cure, no vaccination, basically the entire eradication effort is built on behavior change,” said Kelly Callahan, a public health worker who spent years fighting Guinea worm disease in southern Sudan with the Carter Center, the charity the ex-president and his wife created in partnership with Emory University.

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

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

Because of Carter, the world has come incredibly close to wiping out Guinea worm.

“I would like to see Guinea worm completely eradicated before I die,” Carter said at a news conference in 2015. “I’d like for the last Guinea worm to die before I do. I think right now we have 11 cases. We started out with 3.6 million cases.”

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 would 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 had 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 to report infected animals. Nonetheless, Carter’s campaign has been remarkably successful.

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 by “drinking bad water.” One of them was Guinea worm.

“The main reason (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.

Dr. Paul Farmer, the founder of Partners in Health and a champion of global health causes who died last year, spoke to NPR in 2019 about Carter’s efforts. Farmer said 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. I mean, there were millions of cases when he got involved … after his presidency in the mid-’80s. And now we are down to fewer than a hundred last year.” In 2022, the Carter Center reported, there were only 13 recorded human cases of the disease, a provisional number that will be officially confirmed, likely this month.

“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. Carter’s had to sweet-talk all those people. And that’s something that’s been very inspiring to many of us,” Farmer said.

Christopher Plowe, adjunct professor of medicine at the University of Maryland School of Medicine, 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,” said 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 said it was his upbringing in an impoverished part of the South that left him with a strong sense of self-reliance and self-sacrifice, and a duty to help others.

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 said his Christian faith drove him.

“He did what he did out of a love for mankind,” said Linda Fuller Degelmann, a co-founder of Habitat for Humanity, which has 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.

In February, Carter entered hospice care, forgoing additional medical treatment to extend his life. But his death will not mean the end of his work. In a statement, the Carter Center has pledged to continue the fight to wipe out Guinea worm.

When the disease does come to an end, it will become one of Carter’s signature achievements — an extraordinary accomplishment that reflects a simple yet profound tenet of his personal philosophy: “to try to help one another instead of being willing to go to war with one another.”

This article is from a partnership that includes NPR and KHN. KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.