Reporting by Johnstone Kpilaakaa, Justina Asishana & Uchenna Igwe
Seri, a village in Plateau state’s Kanke local government, is nestled with hills and valleys, where Antonia Peter, 70, is lying on an old wooden bench, flanked by young children playing various games. At their age, Antonia’s world was abruptly veiled in shadows when she fell victim to the merciless grip of river blindness.
“I started struggling with my sight, and my skin was also itching often. I cannot remember how old I was when it happened,” she said. In the 80s, 90s and early to mid-2000s, river blindness (or Onchocerciasis) was prevalent in Seri.
Due to how early she contracted this disease, she could not get formal education because of the far location of the only school. However, she attended catechism at a catholic church beside her parent’s house, and she got baptised by the missionaries who named her Antonia.
River blindness is a parasitic disease caused by the filarial worm Onchocerca volvulus transmitted by repeated bites of infected blackflies (Simulium spp.). According to the World Health Organisation (WHO), these blackflies breed along fast-flowing rivers and streams, close to remote villages near fertile land where people rely on agriculture.
Seri stream is located about two hundred metres away from where Antonia was lying down; most of the early residents of this village depended on this stream for domestic needs and agriculture. The downside of the stream was the increased exposure of the community to this neglected tropical disease (NTD). “We were told stories of many of our ancestors who died from this disease,” says Amos Bitrus, a community leader at Seri.
As of 2018, “Nigeria [was] the most endemic country in the world for river blindness, accounting for as much as 40% of the global disease burden,” according to Dr Frank Richards, senior advisor to the Carter Center’s River Blindness Elimination Program. The Global Burden of Disease Study estimated in 2017 that at least 220 million people required preventive chemotherapy against Onchocerciasis, 14.6 million of the infected people already had a skin disease and 1.15 million had vision loss and over 99% of infected people live in 31 African countries—including Nigeria.
Halting the plague
In 1996, The Carter Center, in collaboration with other partners, including Nigeria’s Federal Ministry of Health (FMOH), commenced a project to curb several NTDs in Nigeria, including river blindness. This initiative aimed to double down on the efforts of Nigeria’s River Blindness Foundation, which began in 1991.
“At one time, elimination of river blindness in Nigeria was deemed impossible, and the government of Nigeria and The Carter Center set their sights on merely keeping it under control,” according to the Center. However, in 2013, the co-founder of the Carter Center and former U.S. President Jimmy Carter said, “River blindness can and should be eliminated, not just controlled, even in the most afflicted areas of Africa.”
With its partners, The Carter Center set up offices across the country, with its headquarters in Jos, Plateau state—where the disease was more prevalent. During the programme, The Carter Center and its partners provided health education in rural communities like Seri, alongside mass drug administration (MDA) of the medicine Mectizan®, donated by Merck & Co., Inc.
“The White people and some other Nigerian medical personnel [referring to The Carter Center team and its partners] visited our village every month to teach us safety precautions and administer medications; older people, pregnant women, and children were prioritized,” Mr Bitrus said.
Antonia Peter is one of the beneficiaries of the initiative. “After many years of struggling with these diseases [river blindness and elephantiasis], I had given up on recovering,” Antonia said as she struggled to speak while lifting her face mapped with deeply etched lines, revealing the countless stories within the tapestry of her existence.
Antonia did not receive any treatment throughout the period when she went down with the NTDs. “No one knew what these ailments were; we did not even have herbal medications for them,” she said. However, two years after she was administered Mectizan®, Antonia said she got healed. “I started walking to distances I could not cover before that time. I can’t do that now because of old age, but you can look at my eyes and legs; they look ‘normal’, unlike before,” she added.
Mectizan kills the parasite larvae in the human body, preventing blindness and skin disease in infected persons and stopping the transmission of the parasite to others. After delivering 27 million doses of medication over more than 20 years, The Carter Center announced in 2018 that it interrupted the transmission of river blindness in Plateau and Nassarawa states and has also halted the mass administration of Mectizan® in affected communities.
“Stopping the mass drug administration program in Plateau and Nasarawa states is a major achievement,” Richards said. “But we must be careful to monitor closely over the next few years to ensure it does not come back. This will require continued effort and perseverance.” As of June 2023, when this reporter visited The Carter Center office in Jos, it was still operational.
Currently, the Carter Centre is collecting and reviewing samples from three states in Southern Nigeria; this will enable them to commence MDA in the region.
According to Dr Yao Sodahlon, director of the Mectizan Donation Program, “It is the largest ‘stop MDA decision’ in the history of the struggle against onchocerciasis.” The Carter Center said that over 6,000 people and more than 18,000 vector black flies were tested and found free of river blindness infection, confirming the need to stop the MDA in both states.
“Since the elimination was announced, we have not encountered any case of the disease,” says Mafullu Rafan, the deputy health officer at Primary Health Centre (PHC), Amper Centre, the largest healthcare facility close to Seri Community.
Engaging the communities came with hurdles.
Initially, when the River Blindness intervention started in Plateau State, the FMOH and the Plateau State River Blindness Foundation were using existing primary healthcare facilities—like PHC Amper Centre—to distribute the medication to cut costs.
However, the intervention transitioned from a mobile delivery system to community-based distribution (CBD), leveraging village-based personnel to hasten the process.
As of 1992, when this transition started, most eligible volunteers who were mostly recommended by their community leaders were school teachers. This was due to their communication and arithmetic experiences. “The community-based distributors (CBDs) were required to be available for five to ten work days just before and during the treatment period,” the Carter Center said.
As part of this transition, CBDs received monetary incentives ranging from ₦100 to ₦200 (approximately $8–16 in 1992). However, some of these distributors were underpaid or received no payment at all. Also, favouritism affected the selection of competent CBDs in these communities, as community leaders often selected their relatives or friends for the roles.
However, at the end of 1994, over 1000 CBDs were trained in Plateau State.
Why Niger State still battles to eradicate NTDs in 25 LGAs
Niger State is a state still endemic for Onchocerciasis, Lymphatic Filariasis, Schistosomiasis, Soil-transmitted helminths, and Trachoma. According to a mapping survey by the state Ministry of Health carried out in the 25 local government areas of the state, NTDs were found to be prevalent in these local government areas, ranging from 2% to 88%.
The Niger State Coordinator on NTD Elimination, Hajiya Nauzo, said that onchocerciasis was the major cause of blindness in many rural communities across the state, pointing out that even though the state has effectively eradicated trachoma, it is still battling with combating Onchocerciasis as there are often spots of cases reported once in a while.
The state Coordinator highlighted insecurity in some parts of the state, high attrition of community implementers (Community Directed Distributors), low commitment of health workers and community implementers, diminishing community support in many communities endemic for NTDs, lack of release of counterpart funds at all levels, weak involvement of line ministries in the elimination activities of NTDs, and the non-conduct of regular operational research to address programme challenges as reasons why Onchocerciasis and other NTDs may not have been successfully eliminated in the state.
“Niger state is faced with insecurity, and this is significantly affecting the fight against the elimination of NTDs. When we are about to go for field work, we often get information about attacks and turn back. Sometimes you will be in the field, and then you will start hearing gunshots up and down and you have to stop whatever you are doing and look for a place to hide.
“Last year, that was what happened to those who went to the Mariga, Rafi and Shiroro axis. They were inside when these attacks occurred, but they could not leave; they had to stay in the bush, including the partners who came in from Abuja. Several of them are unwilling to go to that area, but they need these drugs because they are also endemic to the NTDs. The security challenges are so serious that if not addressed, we cannot eliminate NTDs.”
Nauzo said that the state adopted the Community Directed Treatment with Ivermectin (CDTI) strategy as the main strategy of programme implementation, while for the collection of data, Lymphatic filariasis (LF) mapping and baseline surveys were conducted.
The Mission to Save the Helpless (Mitosath) is one of the organizations helping the state government eradicate NTDs. According to Salome Marcus, the initiative has been in place in the state for seven years. She pointed out that there has been a massive reduction in cases of river blindness, but it has not been eliminated in the state.
She noted that schistosomiasis is the most prevalent in the state, while Onchocerciasis is endemic in 21 local government areas.
“We are using the standard community and school-based approach during the NTDs interventions. Sometimes strategies are initiated based on situations or problems in the local government areas to ensure smooth implementation.”
Marcus also disclosed that for effective monitoring and evaluation, Mitosath also provided the local government coordinators with motorcycles so that they would be able to get to hard-to-reach communities.
She expressed optimism that river blindness and other NTDs would soon be eradicated in Niger State as several local government areas have passed the transmission assessment survey (TAS 1), which is a surveillance tool to determine that infection levels are sustained below target thresholds, which is an indication that treatment is working.
FCT, on course for the elimination of River Blindness
In Nigeria’s Federal Capital Territory, onchocerciasis is prevalent in all of its six area councils: Abaji, Abuja Municipal, Gwagwalada, Kuje, Bwari, and Kwali.
However, the Federal Capital Territory Administration (FCTA), with support from its partners — nongovernmental organizations like the Christian Blind Mission (CBM)— is working towards eliminating river blindness and other NTDs in the FCT.
CBM’s intervention for the elimination of river blindness in the FCT commenced in 1995, Joseph Kumbo, the organization’s NTD Technical Specialist in Nigeria, revealed.
“We have been supporting the FCT to carry out Mass Drug Administrations (MDAs) against river blindness and other NTDs for the past 28 years. At baseline, the FCT was one of the most endemic areas for river blindness in Nigeria. People raised concerns at the time about the location of the federal capital territory here due to the prevalence of black flies. But we were able to push it down thanks to the regular donation of drugs from the WHO,” said Mr Kumbo.
He noted that while onchocerciasis (river blindness) is still endemic across all six area councils of the FCT, interventions are continuous and ongoing until total elimination is achieved.
“Onchocerciasis is one of the diseases set for elimination by the Nigerian Neglected Tropical Disease (NTD) Elimination Programme. Currently, we have reached the stage of impact assessment. The first transmission assessment survey was conducted last year, which is the epidemiological assessment, where children from [ages] one to nine were tested to see if the transmission was going on amongst them,” he said. “We got a good result, which moved us to the second level of assessment, where we had to monitor parasites inside the black flies, which lasted for one year, ending in 2022.”
Kumbo noted that results from the second assessment showed that black flies were still vectors of the parasite, which meant that intervention was still required.
“The elimination committee has directed us to continue with MDAs once a year for two years across all the area councils. But for the two area councils, Bwari and Abaji, where the positive black flies were caught, we have two interventions in a year, for two years,” he said.
He revealed that residents in the FCT are at risk of being infected with river blindness and advocated for preventive measures to reduce the chance of infection.
“Most times, people do not see the physical manifestation of the disease, but it is still there. So, people living within the FCT should take a dose of Ivermectin at least once a year as a preventive measure,” he said.
This story has been made possible by Nigeria Health Watch, with support from the Solutions Journalism Network, a nonprofit organization dedicated to rigorous and compelling reporting about responses to social problems.