Jimmy Carter, the last guinea worm, and the fate of his disease (and the legacy of his fight with Bourne)
In 2015, millions of people around the world tuned in to hear President Jimmy Carter announce that his cancer – metastatic melanoma – had spread to his brain, but he didn’t focus solely on his own disease. He used the attention to talk about an illness that he didn’t have.
At that point, the United Nations assistant secretary-general was Carter’s former drug czar, Dr. Peter Bourne. He spoke at Carter Center about the diseases that came from contaminated drinking water. No one was willing to take on the problem. Many considered it too daunting.
He said he would like to eradicate the worm before he died. “I’d like for the last Guinea worm to die before I do.”
Carter has had several close calls with a harmful parasite over the course of his life, but his foundation says he’ll stay at home with his family.
A former US President’s Warfare for Elimination of Guinea Worm Viruses: A View from a Farmer’s Perspective
When speaking with reporters a few years ago about his work in Nigeria, the Nobel Peace Prize recipient reminisced about a trip to a village that had many cases.
Carter spoke to NPR about the late Dr. Farmer’s work with global health causes. The farmer said that the former president deserves plenty of the credit for his work to save the worm.
Eradication is a high bar. The World Health Organization has only two diseases that have been completely eradicated in the last 75 years. Two of the three strains of the vaccine are considered eradicated by the WHO.
The disease is disruptive as it makes people unable to work while the worm emerges and it’s a significant financial burden. Because there is no immunity, they can catch it more than once.
A former US President decided to lead the effort to rid the world of parasites that don’t exist in the US, and his team believes that speaks to his kind of leader.
Carter’s efforts have helped eliminated the disease in 17 countries and averted at least 80 million cases, according to the Carter Center.
The Carter Center – whose motto is “wage peace, fight disease, and build hope” – decided it could tackle the Guinea worm challenge without duplicating others’ efforts.
Guinea worm disease: How to get rid of a dracunculiasis in your own stomach or intestinal wall, and how to remove it
Weiss said that the man knew he had to act and that he saw the magnitude of the problem. You can only turn your back on it once you see it.
Guinea worm disease is also known as dracunculiasis, which is Latin for “affliction with little dragons.” Humans and animals are put at risk of being bitten by water fleas when they drink water with a parasites in it.
When the water fleas die inside the human or animal, they release worm larvae that burrow through the stomach and intestinal wall, living and mating inside the connective tissue in the abdomen.
A pregnant female worm can grow up to 3 feet long and as wide as a strand of cooked spaghetti, according to the US Centers for Disease Control and Prevention.
When a female is ready to give birth, she will move below the skin to a place where she can give birth. A blister forms and bursts, and the worm emerges slowly, causing great pain.
Many people try to ease their pain by soaking the blisters in water, but when a worm gets into water, it releases millions of worms to start a new cycle. Instead, they’ve had to offer education about how the parasites spread and make sure they know to keep drinking water clean.
There is no treatment specifically for Guinea worm. People still use the same technique that’s been around for thousands of years: winding the worm around a small stick or piece of gauze as it emerges. The person removing the worm may be able to do so in a short time, but they need to be very careful because it can break and cause more infections.
Jimmy Carter, Guinea Worm, and the Houses of Lords: How Jimmy Carter and Jon Stewart Worked together to Improve Water Safety and Improve Water Quality
In addition to raising money and awareness, the Carter Center set up village-based surveillance, educated the public about how the parasite spreads, distributed larvicides, helped provide support for the creation of clean new wells and handed out cloth-based water filters.
The filters came out of a lunch Carter had in 1989 with Seagram’s liquor heir Edgar Bronfman. Carter used a napkin to explain how to make the water safer. Bronfman, who owned a large part of the DuPont chemical company, had scientists design a material that could filter the water.
Carter was never a remote figurehead with the Guinea worm program, Weiss said. He took care of himself from the start and into his 90s. He could lead eight-hour meetings for three days with locals and still be focused on the next task.
“I’m 41, and I was tired,” Weiss said. “But then he wouldn’t stop. He went on Jon Stewart and told him about the problems with Guinea worm, and then he asked the House of Lords in the UK if they could help. It took a special person to do that.
The pond or dam guards can tell people not to go into the water, and they can also distribute filters.
The Guinea Worm: Desperately Seeking a Way Out Of South Sudan’s Civil War and the Chances for Eradication
Cater even negotiated a four-month “Guinea worm ceasefire” to Sudan’s civil war in 1995, giving health care workers an opportunity to access nearly 2,000 villages with cases. The workers distributed hundreds of thousands of cloth filters and millions of straw filters, enough for every person in Sudan. And it worked. By the time of its independence in 2011, South Sudan had zero recorded human cases and just one animal case. In 2022, there were just a handful of cases.
There are some tropical diseases that are neglected and that’s why they are called neglected tropical diseases. Tropical diseases are much less well known in the world than they are in endemic countries. There isn’t an economic market for developing drugs or vaccines.
A lot of shoe-leather detective work is required to locate the last remaining cases of the Guinea worm. If a village hasn’t had a case for years, residents may be tempted to go back to the old way of doing things. I think we will be close to eradication in a while, she said, but she is hopeful.
Paul said everyone deserves a life with dignity. The cycle of poverty and keeping those countries down can be reinforced by infectious diseases. These efforts matter.”
Jimmy Carter, the guinea worm, when no-one-else would-and-he-triumph: What did he do for humanity?
“He did what he did out of a love for mankind,” says Linda Fuller Degelmann, one of the co-founders of Habitat for Humanity, which counted Jimmy and Rosalynn Carter among their many volunteers, hammering nails by day and sleeping in bunk beds by night. Habitat projects were done in 14 countries by the Carters. “He was a Christian and a lot of the drive came from his understanding of love,” says Degelmann.
Other strategies included providing access to safe water supplies; better detection of human and animal cases; cleaning and bandaging of wounds; preventing infected people and animals from wading into water and the use of a larvicide to kill the worms.
Researchers are now looking for a treatment for infected dogs, and public health workers have turned to new interventions, like paying people cash to report infected animals.
Carter was relentless in demanding that people pay attention to diseases that primarily affect poor people in remote parts of the world. That is a huge challenge. Farmer says that it’s not easy to keep people committed to action in an eradication drive.
“When you take on a problem like this, like Guinea worm, you have to sweet talk the ministry officials, the political figures, the nurses, the doctors, the community activists, the farmers, the people who are … most at risk. Carter’s had to sweet talk all those people. And that’s something that’s been very inspiring to many of us.”
Carter had a war in which he targeted the guine worm. Most of the Americas and Africa have been eliminated from Onchocerciasis due to the work of Carter and the Carter Center.
Major strides have been made against other neglected diseases like lymphatic filariasis, which can cause horrible swelling of the legs and genitals.
Carter’s legacy: The role of self-sacrifice, self-reliance and the responsibility to do what you are supposed to do
Those who know Carter well say it was his upbringing in an impoverished part of the South that left him with a strong sense of self-reliance, self-sacrifice and a duty to help others.
He recognized that getting along with one another and treating each other as equals was one of the hardest things to do. Carter did a good job of that.