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

Jason Beaubien and Sam Whitehead NPR and Kaiser Health News

Jimmy Carter took great pride in pointing out that the United States didn’t start any new wars during his term as president.

However, after he left office he launched a war against “neglected” diseases — those in far-off lands that most Americans will never suffer from and may not have even heard of. Diseases such as 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 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 the parasite was spreading among stray dogs in Chad — and baboons in Ethiopia also were 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.

<p>Former President Jimmy Carter and his wife, Rosalynn, address Savelugu children on the seriousness of eradicating guinea worm disease.</p>

Courtesy Carter Center

Former President Jimmy Carter and his wife, Rosalynn, address Savelugu children on the seriousness of eradicating guinea worm disease.

As the number of cases dwindled, new challenges emerged. In 2018, Guinea worm disease was found in Angola, a country not known to have had cases in the past.

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 turned to new interventions, such as paying people to report infected animals.

Nonetheless, Carter’s campaign has been remarkably successful.

In an interview with NPR in 2015, he recalled the origins of his crusade. Carter’s former drug czar, Peter Borne, was working on a United Nations 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.

The Carter Center pledged to continue the fight against the Guinea worm after Carter’s death.

Christopher Plowe, adjunct professor of medicine at the University of Maryland School of Medicine, agrees that Carter’s advocacy helped governments and public health agencies around the world stay focused on eradicating Guinea worm disease. The Carter Center invested about $500 million since 1986.

“I think we should be optimistic that it is achievable,” Plowe said. “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 were 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.

“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. The Carters worked on Habitat projects in 14 countries.

All of these efforts reflect 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.”

Categories: World News