AILSA CHANG, HOST:
It's no small thing to eradicate a disease, but Jimmy Carter spent a lot of time after his presidency trying to do just that. For years, the Carter Center, his global health and human rights organization in Atlanta, has led the fight to end Guinea worm disease. In just a few decades, the number of human infections has gone from millions a year to just 14 last year. Sam Whitehead from KFF Health News explains what it took to get there and what more is needed to wipe out the parasite for good.
SAM WHITEHEAD: At the Jimmy Carter Presidential Library and Museum in Atlanta, Kelly Callahan leads me to a display case. Inside sits a preserved Guinea worm in a small, glass jar.
KELLY CALLAHAN: It's about three feet long, white, somewhat translucent and looks kind of like a piece of spaghetti.
WHITEHEAD: Callahan spent years fighting Guinea worm disease in southern Sudan with the Carter Center. Humans contract the worms from drinking water contaminated with their larvae. After months of incubation inside the body, the fully grown female worms burst through the skin in painful, burning ulcers. Callahan says the first instinct people have is to find water fast and immerse the wound.
CALLAHAN: You want to put your emerging Guinea worm into a water source to cool it off. As soon as that worm goes into a water source, all of those eggs get pushed into that water source.
WHITEHEAD: Which can contaminate drinking water with new larvae, and the treatment is agonizing. In a painful process that can take weeks, the worm is slowly removed by twisting it around a stick or a piece of gauze. Bad cases can cause permanent disability and keep people from supporting their families. Most cases occur in Africa and Asia, mainly in places without access to clean water. In the 1980s, the Carter Center was tracking some 3.5 million human cases a year. By 2023, there were just 14 cases worldwide. 2024 looks on track to have even fewer.
CALLAHAN: Guinea worm disease has no cure, no vaccination. Basically, the entire eradication effort is built on behavior change.
WHITEHEAD: Which takes sustained, long-term support. It means teaching people in vulnerable areas to filter their water and giving them the low-cost tools to do so. In a 2010 interview provided by the Carter Center, the former president said this helped him understand the ability of all people, no matter their circumstances, to help themselves.
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JIMMY CARTER: And they have proven it by correcting their own problems if they are just given a little bit of information and a little bit of help and guidance.
WHITEHEAD: But even as the number of cases dwindled, new challenges emerged. In 2018, Guinea worm disease was found in Angola, a country not known to have cases in the past. Then there's transmission in animals like dogs, which scientists first detected in 2012. Dr. Sharon Roy worked on Guinea worm eradication for the Centers for Disease Control and Prevention and the World Health Organization.
SHARON ROY: Now, if you go to a village and maybe there's one dog with a worm, it's difficult to make that argument that, oh, that one dog is a really big problem.
WHITEHEAD: Especially if no people in the village have the disease. Researchers are looking for treatments for infected dogs. Public health workers are also encouraging people to tie up their animals so they don't roam and contaminate water supplies. They've offered cash to report dogs that have been infected. Roy argues getting people to change their behavior helped reduce human Guinea worm disease cases. The same could be true for animal cases.
ROY: All of these animals are very closely associated with the humans in the areas that they live, so everything is very closely linked to human behavior.
WHITEHEAD: The World Health Organization also sees animal cases as a setback. A few years ago, the agency pushed its expected eradication date for Guinea worm disease back a full decade, from 2020 to 2030. Dr. Christopher Plowe is a global health scholar with the University of Maryland medical school.
CHRISTOPHER PLOWE: I think we should be optimistic that it is achievable. I think we shouldn't be overly optimistic about how quick it's going to be.
WHITEHEAD: Plowe says knocking out the final cases of a disease is hard. Fewer sick people can mean less interest and less public and private investment.
PLOWE: So that's where having movie stars, pop stars as well as politicians keeping this in the minds of the public is just so essential.
WHITEHEAD: Plowe says President Carter's advocacy helped governments and public health agencies around the world stay focused on eradicating Guinea worm disease. He hopes someone takes over Carter's role as a champion for that goal now that he's gone. the Carter Center says about $500 million have been invested in the campaign since 1986, and Carter made the issue personal, as heard in this 2015 press conference.
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CARTER: I would like to see Guinea worm completely eradicated before I die. I'd like for the last Guinea worm to die before I do.
WHITEHEAD: Not achieving that goal shouldn't be seen as a sign of failure, says Adam Weiss, director of the Carter Center's Guinea worm eradication program. He says the former president helped create an army of people around the world dedicated to eliminating this and other neglected tropical diseases.
ADAM WEISS: And I know the commitment of all of our partners remains steadfast in not only realizing President Carter's vision but realizing now what has become all of our own vision.
WHITEHEAD: Weiss hopes Carter's passing will motivate Guinea worm eradication programs to double down on their work once more and help get closer to Carter's vision of a world where people have a fair chance at life, free of unnecessary suffering. I'm Sam Whitehead reporting from Atlanta.
CHANG: That story was from our partner KFF Health News. Transcript provided by NPR, Copyright NPR.
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