In a Nigerian leprosy colony, residents endure stigma and neglect
There are 64 leprosy settlements across Nigeria but most are in varying states of disrepair with little to no funding.
Ilorin, Nigeria – Abigail Olaiya’s meal schedule has been unpredictable for as long as she can remember. Sometimes she snacks twice a day and at other times, she eats nothing all day because she cannot afford it.
It is a situation the 70-year-old has become used to at Oke Igbala (Yoruba for “hill of salvation”), a leprosarium in Omu-Aran in Nigeria’s central Kwara state, which she has called home for almost three decades.
As a person living with leprosy, she is unable to get stable work and a lack of familial or institutional support is pushing her to the brink of starvation.
Every year, more than 200,000 people are infected with leprosy globally; Nigeria records 1,000 new cases annually, according to a statement by the health minister this February. But there is no available data on the total number of people living with leprosy in Nigeria because “there is no actual curation”, according to the Leprosy Mission Nigeria.
A representative for the Nigeria Centre for Disease Control also told Al Jazeera they do not have that figure.
There are 64 leprosy settlements across Nigeria but most are in varying states of disrepair as government support dries up, leaving them to their own devices.
Founded in 1943 by Canadian missionaries who ran it till the late ‘70s, the Omu-Aran facility is now in the trust of the Evangelical Church Winning All (ECWA) mission. Given the individual and institutional neglect of people with leprosy, the 65 people it houses continue to stay there in perpetuity.
Before discovering the leprosarium, Olaiya said she “suffered a great deal”.
“My father and mother were already dead and my siblings just neglected me,” she told Al Jazeera.
After first experiencing ulcers and swelling – symptoms of leprosy – in 1973, she had no idea where to go for treatment and tried random recommendations as remedies. Nothing worked.
By then, the ulcer in her right leg had spread so much that it had to be amputated. Until 2019 when a non-profit donated a prosthetic leg to her, she had to rely on crutches and a locally made wheelchair for mobility.
‘A dark age’
Olaiya and other residents say the leprosarium has long offered them a deep sense of safety and communal belonging they no longer enjoyed in society.
The facility is still responsible for their food, shelter and allows each resident the autonomy to choose religion, even though it is run by a church. It houses a church, mosque and hospital including an extension with living quarters.
But after the exit of the missionaries, the leprosarium entered a “dark age” due to a paucity of relief materials and medical expertise, according to Samuel Abiodun, the administrator employed by ECWA to oversee the facility. The intervention of ECWA gave it a new lease of life, albeit not like before.
An end-of-year party used to brighten the faces at the leprosarium but none has been held for about six years now. “They eat and are merry and are happy during the party but we are no longer buoyant enough to do such. The NGOs that assist in such capacities have dried up, too,” said Abiodun.
The church employed him to look after the community and supervise the hospital staff but managing the facility with a small budget is a tall order. If the hospital could acquire an x-ray machine and a full blood analyser, it might attract more outpatients, he added.
Some residents of the sanctuary are affected by sicknesses associated with leprosy, including hearing dysfunction, poor eyesight and deformity of body parts, says Ajayi Kayode, a community health officer working at the leprosarium’s hospital.
“They suffer from what we call nerve damage which brings about impairment, deformity and disability,” he said.
Like many other people living with leprosy across Nigeria, Olaiya has long battled hunger and discrimination. With no gainful employment or support from relatives or the government, she is now forced to beg for money.
“If I do not do it, I would have nothing to eat,” she told Al Jazeera. “The drugs at the hospital are not free. If I don’t do it, that means I will die.
“Sometimes, I only make enough money to transport me to and from Ilorin, Omu-Aran and other neighbouring towns,” she added. “When I get back home, I start to look for what to eat. Other times, I have just 50 ($0.12) or 100 naira ($0.25) left after deducting the transport fare. On such days, I buy bread.”
She and the others are now dependent on the generosity of Omu-Aran residents. But even when they are cured, the stigma lingers.
During electoral seasons, local politicians visit Oke Igbala and Omu-Aran to canvass support and make paltry donations and promise to improve their lives when they assume office.
But the pledges remain unfulfilled.
“You know the politicians in Nigeria and how they act,” Abiodun said. “They come during election period but after that, they just disappear and we don’t see them until the next election. That is how they do,” he said.
Need for support
The centre’s capacity to provide care has greatly suffered, says Abiodun.
ECWA gives the management between N2,000,000- N4,000,000 ($4,800 to $9,600) as a yearly grant and they receive N100,000 ($240) monthly from the state government for use of the facility as a referral centre for tuberculosis and leprosy.
But the funds are barely enough so Oke Igbala now has to generate revenues from the treatment of other patients to pay employees.
“We cannot afford to pay the standard rate to our staff,” Abiodun told Al Jazeera in April. “Presently, we are owing the staff about two months’ salary. Yesterday, somebody submitted her resignation letter, we keep employing them and they leave.”
Although Oke Igbala has support from non-profits, it usually comes in the form of drugs and some food. One NGO, the Damien Foundation, renovated houses for some, but many of the patients still live in dilapidated buildings. When the residents fall sick with illnesses that require drugs not on the donation list, they must pay for their medication – and most of them cannot afford to.
“They [residents] compare themselves to lepers living in Ago-Ireti in Ondo state because the government gives those ones a stipend of about 10,000 naira ($24) monthly,” said Abiodun.
Uplifting the standards
Tanimola Akande, professor of public health at the University of Ilorin Teaching Hospital said the dilapidated living conditions in leprosariums across Nigeria are representative of how government at all levels treat the citizenry.
“On their own, they do not earn income that can make their situation better,” he said. “The way forward is for government to play its role in uplifting the living standard of this people.”
According to Akande, there is little to no government funding committing to helping people living with leprosy in Nigeria and treatment is largely donor-driven. The level of expertise in the treatment of leprosy has also declined over the years.
“There are very few committed front-line health workers [for leprosy]” he added. “The older ones playing those roles have largely retired and treatment of leprosy is very unlikely to attract health workers from the gross shortage of human resources for health in Nigeria.
“There is very little political commitment to the treatment of leprosy in Nigeria, this is why most of the facilities used as leprosariums are in very bad condition with dilapidated buildings,” Akande said.
For Olaiya, a lack of the basics is the most saddening.
“Look at me, what I need the most is food so that I do not die of hunger,” she lamented. “The government and everyone who is touched by my condition should help me.”