Former U.S. president Jimmy Carter tries to comfort 6-year-old Ruhama Issah at Savelugu Hospital in Ghana as a Carter Center technical assistant dresses Issah's extremely painful Guinea worm wound. In May, 2010, with Carter Center support, Ghana reported its last case of Guinea worm disease and announced it had stopped disease transmission a year later.Louise Gubb/Carter Center
Jimmy Carter became the first U.S. president to live to 100 on Tuesday, a milestone that seemed unlikely more than 18 months ago when his family said he would be entering hospice care in his hometown in Georgia. And while birthday celebrations are under way, a crucial piece of his legacy is being cemented: The world is closing in on eradicating Guinea worm disease, with just four cases so far this year.
Mr. Carter and his late wife Rosalynn began leading the global fight to get to zero in the mid-1980s, in hopes of making Guinea worm the second human disease to be eliminated, after smallpox. It was an ambitious goal, but one with unique challenges.
Guinea worm is a water-borne disease that affects people in the poorest of countries. It is often seen in remote areas with little infrastructure or interaction with outsiders. Unlike smallpox or polio, there’s no vaccine, treatment, cure or even diagnostic to test for its presence.
That means prevention is predicated almost entirely on changing human behaviour – and convincing skeptical governments and populations that they have the power to stop the disease’s spread.
Lt. James "Jimmy" Carter, background, peers at instruments in main control room of the submarine USS K-1 (SSK-1) in 1952. From 1952-53, Carter served on temporary duty with the Naval Reactors Branch of U.S. Atomic Energy Commission to assist "in the design and development of nuclear propulsion plants for naval vessels."Courtesy of Naval History and Heritage Command
1 of 23
After the end of his presidency in 1981, Mr. Carter took the cause to heart. He raised funding from donor countries and foundations, negotiated commitments from uninterested – and sometimes hostile – leaders, and visited villages to witness the prevention efforts himself.
“I would like to see Guinea worm completely eradicated before I die,” he told a 2015 news conference where he announced he had brain cancer. “We know where all of them are, so I would say that would be my top priority.”
The fight against Guinea worm
Guinea worm, also known as dracunculiasis – Latin for “affliction with little dragons” – is contracted by drinking stagnant water. Water parasites carry the worm larvae, which then travel through the body. A fertilized female worm can grow up to a metre in length and the body’s immune system is not able to fight it.
About a year after infection, the worm will emerge from the skin, often on the lower body, through a blister that is painfully debilitating. It can take days or weeks for the worm to emerge fully from the body as it can only come out a few centimetres at a time. The only relief is submerging the affected body part in water, which releases thousands of larvae and infects the body of water, starting the cycle over again. Because there is no immune response, reinfection can occur a number of times.
President Jimmy Carter and his wife Rosalynn address Savelugu children in Ghana on the seriousness of eradicating guinea worm disease in February, 2007. As this photo was taken, he asked, 'Hands up all those who have had Guinea worm.'Louise Gubb/Carter Center
The Carter Center, the foundation that bears the Carters’ name, began its work on Guinea worm in 1986. At the time, there were an estimated 3.5 million cases in 21 countries across Asia and Africa. That had dwindled to 14 human cases last year. There have been four reported so far this year, split evenly between Chad and South Sudan. Another three countries – Ethiopia, Mali and Angola – have yet to be certified by the World Health Organization as being free of the disease.
Dieudonné Sankara, a doctor who leads the WHO’s global neglected tropical diseases program, grew up in a village in Burkina Faso, where he saw people afflicted by Guinea worm. He eventually became director of the country’s eradication effort and it was certified as free of the disease in 2011.
“If we didn’t have a hero like Jimmy Carter and Rosalynn Carter involved, their help and their championing, we wouldn’t be where we are right now,” he said in an interview.
Jimmy Carter, Chalk River and the dawn of Canada’s nuclear age
With no treatments available, prevention is done mainly through education of people in affected areas, water filtration and treatment and community surveillance of cases. To get everything to come together required a massive amount of political support, which Mr. Carter was able to marshal from leaders of other countries right down to the local administrators needed to carry out local programs. He also was integral in persuading companies to donate supplies such as filters and larvicide on a large scale.
Adam Weiss, the director of the Guinea worm eradication program for the Carter Center, gave his first briefing to Mr. Carter in the early 2000s. In an interview, he recalled spending days reviewing technical updates on the eradication program. Mr. Carter’s ideas and questions, he said, were intensive and specific. “He would go so deep, and he knew Guinea worm so well for so long. It was pretty amazing,” Mr. Weiss said.
The WHO had a goal of 2020 for eradication of the disease. But that target hit a snag in 2012 when there were widespread reports of domesticated animals contracting and spreading Guinea worm.
Place: Nasarawa North, Nigeria Date: Feb. 15, 2007 Credit: The Carter Center Jimmy and Rosalynn Carter measure a little girl's height to gauge the accurate medication needed to prevent schistosomiasis, a silent and destructive parasitic infection that leads to poor growth and impaired learning in children in Nigeria in 2007.Louise Gubb/The Carter Center
Jordan Tappero, deputy director of neglected tropical diseases at the Bill & Melinda Gates Foundation, which provides funding to the Carter Center, said researchers are focusing on diagnostic tools for detecting infections in animals and for environmental surveillance, similar to what is done for polio and COVID-19.
“Those two diagnostic tools is what we’re really pushing for and we’re hoping they’re going to help to accelerate the pathway to eradication,” he said.
A remarkable legacy
Jimmy and Rosalynn Carter give a long-lasting insecticidal bed net, which prevents malaria, to Mrs. Hlmenlike, who hosted the Carters in her home during their tour of the Carter Center's health work in the remote village of Afeta in southwest Ethiopia in 2007.Louise Gubb/The Carter Center
Mr. Carter has spent his post-presidency advocating for human rights, peace, democracy and health care around the world. In addition to Guinea worm, his foundation works to prevent and treat diseases such as trachoma, schistosomiasis and river blindness. It also monitors elections and advocates for peaceful ends to conflicts.
“It became very much a feeling for him that this was the right thing to do, because he respected the people at the end of the road and he wanted to be as helpful as possible and give them the opportunities that he had,” Carter Center chief executive Paige Alexander said. In recent weeks, she and Mr. Weiss were in Chad to facilitate an agreement on cross-border tracking of Guinea worm cases with Cameroon and the Central African Republic.
Getting to zero – the last mile – will be the longest, hardest and relatively most expensive part of the road to a world without the disease. Cases have been in the double digits since 2015 and finding the source of every single one is crucial, along with tracking of animal infections.
Mr. Weiss said eradication relies not just on financial resources, but in empowering people in the remaining five countries that have yet to be certified as free of Guinea worm that they are able to take the fight in their own hands.
“I would love to wish him happy birthday and say we got to zero on Oct. 1,” Mr. Weiss said. “We’re not there this year, but there’s thousands of volunteers and staff working hard every day for this mission and certainly grateful to him for putting it in front of us all as a challenge.”