This story is the third in a series on ways communities are addressing the rise of poverty-related tropical diseases related to poor sewage infrastructure in the rural South. Read the first, second, and fourth.
It’s been a decade since Dr. Adamu Keana Sallau saw the last case of guinea worm in Nigeria. But he talks about the medical breakthrough as if it happened yesterday.
In the early 1990s, Sallau began traveling to remote villages throughout his home country to research nearly 700,000 cases of guinea worm, a neglected tropical disease transmitted when villagers drank stagnant water contaminated with the worm’s larvae. The worms incubate in a person’s abdomen for a year or so before emerging through the skin — usually on an arm or foot — through a painful, itchy lesion. Several feet long, they can take up to three months to exit the body, rendering the person unable to walk, move, work, or attend school.
Guinea worm has no treatment or vaccine. Back then, eradicating such a disease by changing how people used water seemed impossible. These days, visiting villages feels like a different world, said Sallau, now the director of integrated health programs at the Carter Center, an Atlanta-based non-profit founded by former U.S. President Jimmy Carter.
“People are happy, children go to school, people farm and they produce food to take to the market to sell,” he said. “Children growing up now can only hear about guinea worm as a story in the history books.”
In 1986, there were 3.5 million cases of guinea worm in 21 African and Asian countries. Today, there are only 10 cases left. Intense education and intervention programs, funding for clean water access, and government-supported public health campaigns led to the successful eradication of the disease. Now Sallau uses the program as a template to tackle other neglected tropical diseases like malaria, schistosomiasis, and river blindness. Strategies from the successes could be used to inform eradication efforts for neglected tropical diseases in the U.S. such as hookworm, which impacts many poor, rural communities in the South.
Hookworm is a parasite spread through fecal matter in soil. It enters through the foot, then attaches itself to intestines and feeds off blood. Without showing many symptoms, hookworm can cause developmental delays in children and contribute to the cycle of poverty, said Rojelio Mejia, assistant professor of infectious diseases and pediatrics at the National School of Tropical Medicine at Baylor College of Medicine in Houston. In Mejia’s 2017 study in Lowndes County, Alabama, the disease was found in one third of 55 people tested. Researchers suspect many other communities across the region have similarly high numbers.
Now, doctors, researchers, community activists, and lawmakers are working on programs and solutions to reduce the number of neglected tropical diseases in the U.S. South, including a hookworm vaccine, more active community surveillance efforts, and better sanitation infrastructure.
“The South is still highly endemic for tropical diseases closely associated with sanitation and closely associated with poverty,” Mejia said. “It’s a multifactorial problem, and the answer will be get rid of poverty which is a lofty goal. It’s not a person-to-person solution, it’s a public health solution.”
Building a public health movement
To eradicate guinea worm in Nigeria, Sallau directed hundreds of villages to select one male and one female volunteer to visit each household in their community. The volunteers implemented educational programs, practiced guinea worm testing, and helped villagers access treatment. He and other supervisors were the backstops. They maintained records, offered support, and distributed supplies like rubber gloves, medicine, and gauze.
“It’s all relationship and trust building,” Sallau said. “One of the lessons was that change only happens when people you’re working with are invested and involved.”
Though the guinea worm program is no longer necessary in Nigeria and other countries like Kenya, which was certified as guinea worm-free earlier this year, there are still many places using it: a handful of cases exist in Chad, along with three in South Sudan and one in Angola, which has never before reported a case — likely because the disease is seeing a resurgence from infections in dogs.
Adam Weiss has worked on the Guinea Worm Eradication Program at the Carter Center since 2005. Now the senior associate director, he oversees and helps supervisors like Sallau monitor the few remaining programs. Since the program’s inception, the Carter Center has funded and supported National Ministries of Health in each country to develop their own strategy, and worked with other partners like UNICEF to develop clean water initiatives and the U.S. Centers for Disease Control and Prevention to provide technical assistance. The community volunteers, while supported with resources, aren’t paid like some other programs, which Weiss said is to ensure that outsiders don’t come in to solve problems and then leave.
“These [communities] are so far removed from who has wealth and resources in this world, and the fundamental problem is bridging that disconnect,” Weiss said.
For this to succeed, Weiss added, it has taken “packaging things in a way people can understand, supporting and celebrating people in communities, and creating buy-in to the process.”
Along with community engagement efforts, it took a massive campaign in the early years by Carter, international NGOs, and governments to demonstrate how widespread the problem was before it gained funding or attention. That started with understanding the problem.
“Surveillance is the foundation of everything,” Weiss said. “Until it’s reported, we don’t know it’s there. They build interventions out of that surveillance system.”
Though the general structure is the same, community leaders and health ministries have made the programs their own. In Ghana, Sallau’s community-based strategy is used as a model to track and record infant mortality, maternal mortality, polio, cholera, and measles. The educational programs take different forms based on religious, cultural, or geographical differences: one village performed a series of plays; another broadcast information during the halftime programming of soccer matches. The technology can be locally grown, too: the Carter Center adopted a water filtration device created by people in Mali who wrapped cloth filters around a reed as a straw.
“We look within the community — how you can effectively communicate? The best people are those from within those areas,” he added. “To be successful, we lean on them.”
Erasing poverty-related diseases in the U.S.
Seven years ago, Dr. Peter Hotez founded the National School of Tropical Medicine. He wanted to create a center for developing preventions and treatments for neglected tropical diseases — a term he coined to describe chronic and debilitating infections that occur in areas of poverty — like hookworm, river blindness, Chagas disease, tuberculosis, and malaria. He assembled a team of doctors and researchers who worked in the poorest parts of the world, from Latin America to sub-Saharan Africa, to work on outbreak investigations, research, and education for medical professionals and students.
But soon after, Hotez discovered high rates of tropical diseases in his own backyard. He shifted his attention to the nearly 12 million Americans affected by them.
“I never realized we were going to take on diseases of the poor here [in Houston] and on the Gulf Coast,” Hotez said.
Years ago, when he was in his phD program, Hotez started developing a vaccine for hookworm. Finalizing it has become one of the most significant efforts in his field. David Diemert, an associate professor of medicine at George Washington University who has worked on the vaccine for over a decade, said medicine used to treat hookworm, while successful, is “not going to lead to elimination or have serious impact on transmission.”
The vaccine is in clinical trials in Brazil and Gabon. If “everything went perfectly,” Diemert said, it could be six or seven years before the vaccine is FDA-approved. Realistically, it will be a decade, even though it’s being developed locally and affordably for governments around the world.
“I’ve had a lot of success raising awareness of the poor in places like sub-Saharan Africa and Asia to work with U.S. Congress and get money appropriated,” Hotez said. “And then when we started finding them in the poor, Southern U.S., I thought, ‘Wow, this will really take off — we’ll take out these diseases in a big way. But it’s been very disappointing — the opposite has happened. It’s much harder to get people to care.”
To make an impact on these diseases in the U.S., it’s likely going to take a multi-year effort with public and private partnerships in the U.S. The problem is, Mejia said, “there is really no money in a vaccine that impacts poor people.”
It’s a daunting and expensive task, but Hotez and his team are pushing a multi-part solution. He said he’s tried to work with legislators to invest in eradication efforts. Last year, Sen. Cory Booker and several other lawmakers introduced the End Neglected Tropical Diseases Act, which would “facilitate effective research on and treatment of neglected tropical diseases through coordinated domestic and international efforts.” The bill hasn’t been put up for a vote yet.
The National School of Tropical Medicine is also working on better technology to diagnose and treat parasites like hookworm. But, according to Hotez, the most important part is active and engaged community surveillance.
The Centers for Disease Control and Prevention doesn’t conduct national surveillance for human hookworm in the U.S. According to Sue Montgomery, who leads the epidemiology team for the agency’s parasitic disease branch, the last study was done in 1982, when hookworm prevalence in one area of Appalachia was 19.6 percent. Montgomery said the agency received funding this year to study hookworm in the Southern U.S., but projects are still in the development stage.
“We acknowledge that more work is needed to understand the extent to which there is ongoing transmission,” Montgomery said.
Lowndes County, Alabama is ground zero for this public health crisis, but local activists aren’t waiting for a national or international campaign. After years of trying to raise awareness, they’re leading efforts to fund sewage infrastructure improvements and public health education. This year, Baylor researchers are testing more than 300 children in the area for infections, and the local health department said it is also surveying and educating communities.
That’s an important first step in solving a public health crisis, Sallau said. “It has to work from the bottom up. We took [community] ideas in the planning stages, the conceptualization,” he said. “They see themselves as part of problem, and they can see themselves finding the solution.”
This series is supported by the Solutions Journalism Network, a nonprofit focused on reporting about responses to social problems.