UZUAKOLI, Nigeria — When light spots slowly began to appear on his hands, Ifeanyi Agbai thought it was severe malaria and sought care at a pharmacy. But the skin lesions forming on his feet and hands, and the burning sensation accompanying them, didn't go away.
For three years, he went to hospitals, tried using traditional medicine, and visited houses of prayer, yet nothing changed. Dejected, Agbai, who owned a clothing boutique in the southern Nigerian city of Port Harcourt, returned to his family’s village in Abia state to wait out the illness. It was there that he was advised to visit the Uzuakoli Leprosy Centre, a 40-minute bus ride away.
“The necessary people that should take leprosy as a priority, both in the state and [at] federal levels, are not doing that.”— The Rev. Joshua Okpara, project director, Uzuakoli Leprosy Centre
“I came here on 5 March, 2018, and that was the day my problem ended,” he told Devex. “All the nurses were like, ‘This is the kind of thing we treat here’ … I [had] never heard of leprosy before.”
Like Agbai, many Nigerians have no awareness of leprosy or believe it is a disease of the past. Yet around the world, more than 200,000 people are newly diagnosed with the disease each year — most of them in 23 countries. Nigeria, one of the nations in this group, registered 2,095 new cases in 2018.
Leprosy post-exposure prophylaxis is the first major innovation in treatment since multidrug therapy was introduced in the 1980s. But organizations fighting the neglected tropical disease disagree on whether it really is a magic bullet.
Also known as Hansen’s disease, leprosy is caused by a bacterium that spreads through the body slowly. Infection is thought to occur by breathing in droplets in the air and usually involves long-term contact with someone who has the disease. But due to stigma and the belief that leprosy is caused by a curse, patients are often ostracized from their communities.
Left untreated, leprosy can cause irreversible damage to hands, feet, and eyes, potentially leading to paralysis, blindness, and amputations. Since the 1980s, however, a combination of antibiotics used in an approach known as multidrug therapy, or MDT, has made this ancient disease curable.
A huge global drive against leprosy meant that, by 2000, the World Health Organization’s target of less than 1 case per 10,000 people had been achieved worldwide. For WHO, this represented the “elimination of leprosy as public health problem.” Over the following years, it dropped off the radar as a public health concern.
Nigeria established a National Tuberculosis and Leprosy Control Programme in 1989 to actively identify cases of leprosy and administer MDT. Nationally, the country also achieved WHO’s benchmark in 2000.
“There is a huge risk of resurgence because leprosy is infectious and the effort to fight it has not been sustained.”— Dr. Sunday Udo, director, Leprosy Mission Nigeria
But 20 years later, leprosy still occurs in the country. Many researchers and medical professionals believe that after meeting the elimination target, Nigeria’s commitment to leprosy control faltered. Left to compete with other health priorities such as HIV/AIDs, tuberculosis, and malaria, investment in leprosy diminished heavily.
“That elimination target was very controversial,” said Dr. Joseph Chukwu, medical coordinator of the German Leprosy and Tuberculosis Relief Association, which has been working in Nigeria for over five decades.
The problem, he noted, is that “we have become a victim of our own success.” When governments felt leprosy was no longer a serious problem, they shifted their attention elsewhere. A 2013 study blamed the persistence of leprosy in Nigeria on a weak referral system, lack of expertise among medical professionals, abysmal financing, and ongoing discrimination against patients.
Keeping leprosy on the agenda
At the Uzuakoli leprosy facility, a group of five patients sit on wooden benches at the front of the clinic, their conversation segueing from wound care to managing work.
“It has not been easy for us because the necessary people that should take leprosy as a priority, both in the state and [at] federal levels, are not doing that,” said the Rev. Joshua Okpara, project director at the center. According to Okpara, the center has not received any government funding since 2009. Uzuakoli and other centers like it rely largely on donations from faith groups and nonprofits such as The Leprosy Mission Nigeria, the German Leprosy and Tuberculosis Relief Association, and the Damien Foundation Belgium, which provide free drugs and support for patients.
Starved of serious funding for leprosy care, Okpara said there is only so much these centers can do in terms of rehabilitation, vocational training, education, and other forms of support to help patients lead a normal life.
“Hunger is killing us here.”— Cletus Unachukwu, Oji River Leprosy Settlement patient
Agbai, now cured of leprosy, lives in a settlement inside the Uzuakoli Leprosy Centre that houses about 100 other patients, most of whom live there with their families. Stigma, disability, and a lack of support can make it difficult for patients to return to their home communities — but even in the centers, the lack of financing and job opportunities means survival is a struggle.
“Hunger is killing us here,” said 54-year-old Cletus Unachukwu, who lives with his wife and five children in another center, the Oji River Leprosy Settlement, where many residents survive by farming cassava. “There are people with terrible ulcers, some have disabilities, and only those who are fit can go out to beg for alms on the highway,” he said.
Moreover, as support for leprosy control remains so lean, health workers and NGOs worry that the disease might see a resurgence.
“There is a huge risk of resurgence because leprosy is infectious and the effort to fight it has not been sustained,” said Dr. Sunday Udo, director of the Leprosy Mission Nigeria.
The stigma and lack of awareness around leprosy mean that about 95% of cases are not diagnosed until the disease is at its most advanced stage, he said, at which point it is much more infectious and often results in disabilities.
Reviving efforts to stamp out leprosy
Despite the challenges, some believe that international efforts to curtail leprosy are picking up again. In 2016, WHO launched a five-year “Global Leprosy Strategy” with the goal of significantly reducing disabilities among leprosy patients and ensuring that no country has legislation discriminating against them.
Netherlands Leprosy Relief has developed an app to help health care workers identify leprosy and other common skin infections early and make referrals when needed. And a coalition of leprosy organizations known as the Global Partnership for Zero Leprosy launched last year, with a mission to end the disease once and for all.
Nigeria’s National Tuberculosis and Leprosy Control Programme did not respond to multiple requests for comment for this story.
However, Udo said that administering drugs to predisposed populations to prevent the spread of leprosy would help break the chain of ongoing transmission.
Meanwhile the German leprosy association’s Chukwu called for finding active cases, increasing awareness about the disease to reduce stigma, and providing adequate treatment and care for new cases.
“We have to exploit every avenue [including] the social media to raise public awareness and fight stigma,” he said.
In the meantime, Agbai is troubled. Cut off from life outside Uzuakoli for over four years, all he wants is a fresh start.
“I want to start my boutique business again,” he said. “But where would I get the 500,000 naira [$1,400] I need to rent a shop and buy goods?”