Former President Jimmy Carter’s oft-stated wish was to see the last Guinea worm die before he did. Even though America is 39e president, who died Sunday at the age of 100, didn’t quite work out that dream left him an enormous legacy in the field of global health.
The causes he embraced 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 affects the lymphatic system, leading to severely swollen limbs or elephantiasis. And Guinea worm.
There was nothing glamorous about helping people affected by these diseases, which mainly affect the poor and powerless in sub-Saharan Africa; no one throws black-tie galas at Carter’s eponymous foundation, the Carter Center, to fund work to combat it. They generally fall under 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, terrible ailments contracted from drinking contaminated water or being bitten by infected flies?
“Anyone who has such a prominent and influential voice could choose to use their voice in many different ways. And to say, ‘I’m going to use my voice for the poorest, most marginalized, most remote people in faraway lands with diseases 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 that the Carter Center focuses on and funds some of its work.
“I think the majority of the world, if they know what the Guinea worm is, they know because of President Carter,” she said, surprised to see 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 brought visibility to devastating health problems that are often invisible. “I think he gave a voice to people who had no 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 election loss to Ronald Reagan in 1980 after one term made him, at the age of 56, the youngest ex-president the country had seen in almost seventy years. He struggled to figure out what to do with the rest of his life; he realized that from a statistical point of view of life expectancy, he could live another 25 years. (He actually lived another 44 years.)
However, some guiding principles were clear from the start. Carter recalled that in “a somewhat naive moment” shortly after his defeat, he told the White House press corps that he would try to emulate President Harry S. Truman and refrain from activities aimed at self-enrichment. “There may be certain types of benevolent companies or nonprofits where I allow my influence and my abilities to be used, but not in a profitable way,” he said.
The hiring of Bill Foege as the first executive director of the Carter Center — which houses Carter’s presidential library — could have set the table. Foege was one of the leaders of the successful effort to eradicate smallpox, serving as 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 search for a new role came in 1986, when an old friend and advisor visited the Carter Center and issued a challenge. Peter Bourne, who had advised Carter first as governor of Georgia and later in the White House, had later become assistant secretary general of the United Nations, where he founded and led the International Drinking Water Supply and Sanitation Decade, a program aimed at providing clean water and sanitation around the world.
Bourne gave a presentation on the Guinea worm, a parasite contracted by drinking contaminated water that burrows into the body of an infected person and causes agonizing pain. Bourne showed photographs of what Carter described as the “most unpleasant and neglected of all waterborne diseases.” The former president urged the center to study the issue, and the eradication of the worms in Guinea became the first global health project.
Donald Hopkins, who worked at the CDC on Guinea worm control in the early 1980s, remembers that day. He suggested that the heavy toll that Guinea worm disease takes on the communities it affects resonated with Carter. It keeps infected children from school and infected farmers from their fields, endangering the livelihoods of families and the futures of their children.
“I think it was just a deep-seated empathy for people that the world neglected,” Hopkins said. “And the diseases were a means to an end and to help them improve their lives.”
When Hopkins was at the CDC, it was a challenge to get attention and funding for Guinea worm control. “It was really hard work because most people didn’t know about Guinea worm disease,” he said. “Those who knew about it didn’t care, except the people who were affected by it. International donors, agencies, etc. were virtually unaware of it and did not understand the opportunities 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 a special advisor to the 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 about the issue, someone like actor Harry Belafonte, who was named a UNICEF Goodwill Ambassador in 1987. “But you know, Harry Belafonte or anyone else like him wouldn’t have been able to pick up the phone and get heads of state on the phone and get the kind of entrance and response from international donors, from the public media, nor from international donors. of the heads of government of the countries that had Guinea worm disease, as President Carter was able to do,” Hopkins said.
Foege, the former CDC director, also saw the power that an ex-president – this ex-president – wielded.
Carter could go to Africa and meet with heads of state, with cabinet heavyweights such as treasury ministers invariably attending the meeting. “If I were to go to Africa now, I could undoubtedly meet with the Minister of Health. But never with the head of state,” Foege said. Finance ministers have much more influence than health ministers, he noted. “So it’s a completely different dynamic.”
“Time and time again, with the Guinea worm, river blindness, trachoma, sanitation, [Carter’s] intervention made a difference in what was accomplished,” Foege said. “He told me he would become interested in global health if I became director of the Carter Center. He kept his word and became a dominant change agent in global health.”
Later, Roy Vagelos, then CEO of drugmaker Merck, made what would become a historic bid for the center. The company had concluded that 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 discovery of what was the subject of the 2015 Nobel Prize in Medicine – whether the Carter Center could come up with a protocol to ensure that the free pills would not undermine sales of the veterinary drug, sold as Heartgard.
Carter upped the ante in 1994 during a visit to Chad with Vagelos. The trip was recorded so that the footage could be used to help educate other countries on the fight against river blindness. With the cameras on, Carter put Vagelos on the spot and asked if Merck would be willing to donate enough of the drug to treat all the affected communities. He received no immediate commitment, but Merck’s board agreed to Carter’s request. Merck has donated ivermectin – “as much as it takes, for as long as it takes” – ever since.
The other neglected diseases that the Center seeks 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 the Guinea worm focused on its eradication – permanently eradicating the worms that affected an estimated 3.5 million people per year in 21 countries before 1986, when eradication efforts formally began. An infestation of dogs complicated efforts and caused the target date for completion to be postponed. But in 2023 only 14 cases of Guinea worm disease in humans were reported worldwide – the lowest annual numbers ever recorded.
The reduction in the number of cases and the disability they caused has been enormous. Galea said this kind of work – tackling seemingly intractable problems in low-resourced and remote, sometimes unsafe environments – has shown that progress can be made.
“He elevated, 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 the eradication of the Guinea worm, was in regular contact with the former president.
Carter was both hands-on and often on the ground, Breman said, noting that Carter traveled to villages where the center’s programs were active. “Actively involved in promoting and going to the front lines since the program started in the late 80s,” he said. (STAT’s interview with Breman took place before his death on April 6, 2024.)
If there were obstacles, whether insecurity hindering work or declining political commitment in a stricken country, Carter offered to oppose them. ‘He said…’What can I do? I’m calling the president,” Breman said. “That’s how he operated.”
The fact that a former president championed these causes made a huge difference, Breman said. “Presidents are influencers. People love it. Donors love it.”
“He has been a tremendous gift to all of us who come after him,” said Agler, who is currently executive director of the LightEn Center of Consciousness & Action in Marshall, NC. “He will be missed.”