Former President Jimmy Carter’s oft-stated desire was to see the last Guinea worm die before he did. Though America’s 39th president, who died Sunday at age 100, did not quite achieve that dream, he left a huge legacy in the field of global health.
The causes he espoused are diseases whose names most of us barely know. Onchocerciasis, or river blindness. Schistosomiasis, a disease caused by parasitic worms. Trachoma, which also causes blindness. Lymphatic filariasis, a parasitic disease that attacks the lymphatic system, leading to grossly swollen limbs or elephantiasis. And Guinea worm.
There was nothing glamorous about helping people affected by these diseases, which mainly afflict the poor and powerless in sub-Saharan Africa; no one throws black-tie galas at Carter’s namesake foundation, the Carter Center, to fund work to combat them. They are generally the purview of card-carrying members of a tribe of specialists. Who else would choose to focus on what are known as neglected tropical diseases, awful ailments contracted by drinking contaminated water or being bitten by infected flies?
“Anybody who has that prominence and that influential of a voice could choose to use their voice in lots of different ways. And to say: ‘I’m going to use my voice for the poorest, most marginalized, most remote people in faraway countries with diseases that we can’t pronounce,’ that means a lot,” said Ellen Agler, former CEO of the End Fund, a private philanthropic organization that works on many of the same neglected diseases the Carter Center targets and that funds some of its work.
“I think that the majority of the world, if they know what Guinea worm is, they know it because of President Carter,” she said, marveling that she saw Carter talking about it on late-night shows. “Who else had that kind of access?”
Sandro Galea, outgoing dean of the School of Public Health at Boston University, agreed, saying Carter gave visibility to devastating health problems that are often invisible. “I think he gave voice to people who didn’t have a voice.”
“I think the world is a better place for it,” Galea said.
Carter discussed the evolution of his global health work in his 2007 memoir “Beyond the White House: Waging Peace, Fighting Disease, Building Hope.”
His 1980 electoral loss to Ronald Reagan after a single term left him, at 56, the youngest ex-president the country had seen in nearly seven decades. He struggled to figure out what to do with the rest of his life; he realized that from a statistical life expectancy point of view he might live another 25 years. (He actually lived another 44 years.)
Some guiding tenets, though, were clear from the get-go. Carter recalled that in “a somewhat näive moment” soon after his defeat, he told the White House press corps that he would try to emulate President Harry S. Truman and refrain from activities in his post-presidency aimed at self-enrichment. “There may be some kinds of benevolent or non-profit corporations in which I will let my influence and my ability be used, but not in a profit-making way,” he said.
Hiring Bill Foege as the first executive director of the Carter Center — which houses Carter’s presidential library — may have laid the table. Foege was one of the leaders of the successful effort to eradicate smallpox, and had been director of the Centers for Disease Control and Prevention from 1977 to 1983.
As Carter wrote in his memoir, a pivotal moment in his and the center’s quest for a new role came in 1986, when an old friend and adviser visited the Carter Center and issued a challenge. Peter Bourne, who had counseled Carter first as governor of Georgia and later in the White House, had gone on to be the United Nations assistant secretary-general, where he established and ran the International Drinking Water Supply and Sanitation Decade, a program aimed at delivering clean water and sanitation around the world.
Bourne made a presentation on Guinea worm, a parasite that is contracted by drinking infested water and that burrows into an infected person’s body, causing agonizing pain. Bourne displayed pictures of what Carter described as the “most obnoxious and neglected of all waterborne diseases.” The former president urged the center to study the issue, and Guinea worm eradication became its first global health project.
Donald Hopkins, who worked on Guinea worm control at the CDC in the early 1980s, remembers that day. He suggested the heavy toll Guinea worm disease extracted from the communities it afflicts resonated with Carter. It keeps infected children out of school and infected farmers out of their field, jeopardizing families’ livelihoods and their children’s futures.
“I think it was just a deep-in-his-bones empathy for people who the world neglected,” said Hopkins. “And the diseases were a means to an end to help them improve their lives.”
When Hopkins was at the CDC, getting attention and funding for Guinea worm control was a challenge. “It was really heavy lifting because most people didn’t know about Guinea worm disease,” he said. “Those that knew about it didn’t care about it, except for people who were suffering from it. International donors, agencies, etc., were pretty much oblivious to it and didn’t understand the opportunity it presented.”
After retiring from the CDC, Hopkins joined the Carter Center in 1987 and later served as director of its health programs. (He is now special adviser for its Guinea worm eradication program.) He quickly saw the difference made by having a former U.S. president put his shoulder to the wheel.
He and his CDC colleagues had hoped to find a celebrity advocate to raise awareness of the issue, someone like the actor Harry Belafonte, who in 1987 was named a UNICEF Goodwill Ambassador. “But, you know, Harry Belafonte or anybody else like him would not have been able to pick up the phone and get heads of state on the line and get the kind of entree and response from international donors, from the public media, as well as from the heads of government of the countries that had Guinea worm disease, the way President Carter could,” Hopkins said.
Foege, the former CDC director, saw the power an ex-president — this ex-president — wielded, too.
Carter could go to Africa and meet with heads of state, who would invariably have cabinet heavyweights like their finance ministers present for the meeting. “Now, if I went to Africa, I would undoubtedly be able to get in a meeting with the minister of health. But never with the head of state,” Foege said. Finance ministers carry far more clout than health ministers, he noted. “So it’s a whole totally different dynamic.”
Later, Roy Vagelos, then CEO of the drugmaker Merck, made the center what would become an historic offer. The company had come to realize a drug it had developed to treat heartworm in dogs and other pets was effective against the worms that cause onchocerciasis, or river blindness, the second leading infectious cause of blindness.
Merck offered to make a substantial donation of the drug, ivermectin — the discovery of which was the subject of the 2015 Nobel Prize for Medicine — if the Carter Center could come up with a protocol to ensure that the free pills didn’t undercut sales of the veterinary drug, sold as Heartgard.
Carter upped the ante in 1994 in a visit to Chad with Vagelos. The trip was being recorded, so that the footage could be used to help instruct other countries about battling river blindness. When the cameras were on, Carter put Vagelos on the spot and asked if Merck would be willing to donate enough of the drug to treat all affected communities. He didn’t get an immediate commitment, but Merck’s board agreed to Carter’s request. Merck has donated ivermectin — “as much as needed for as long as needed” — ever since.
The other neglected diseases the Center Center works to control or eliminate — lymphatic filariasis, schistosomiasis, and trachoma — found their way into the organization’s global health program because they were a natural fit, Carter wrote.
His work on Guinea worm was aimed at eradicating it — permanently banishing the worms that afflicted an estimated 3.5 million people a year in 21 countries prior to 1986, when the eradication effort formally began. Infestation of dogs complicated the effort and pushed back the target date for completion. But in 2023, just 14 human cases of Guinea worm disease were reported worldwide — the lowest annual count on record.
The reduction in the number of cases, and in the disability they caused, has been massive. Galea said this type of work — tackling seemingly intractable problems in low-resource and remote, sometimes insecure settings — showed that progress can be made.
“He elevated through, I think, his own action and clarity of moral purpose, the art of the possible,” he said of Carter.
Joel Breman, chairman of the international commission to certify Guinea worm eradication, was in regular contact with the former president.
Carter was both hands-on and often on the ground, said Breman, noting Carter traveled to villages where the center’s programs operated. “Actively involved promoting, going to the front lines since the program began in the late ’80s,” he said. (STAT’s interview with Breman was conducted before his death on April 6, 2024.)
When there were hurdles, whether insecurity impeding work or waning political commitment in an affected country, Carter would offer to throw his weight against them. “He would say … ‘What can I do? I’ll call the president,’” said Breman. “That’s how he operated.”
Having a former president championing these causes made an enormous difference, Breman said. “Presidents are influencers. The people love it. Donors love it.”
“He’s been a tremendous gift to all of us who come after him,” said Agler, who currently serves as executive director of the LightEn Center of Consciousness & Action in Marshall, N.C. “He will be missed.”