Leprosy: An old disease facing new money hurdles

Hajara is fighting for her life. She is also fighting the stigma that leprosy has served her. “I’m just waiting for God to take me home,” she says. Extensive damage to her nerves meant she needed limb amputation, and last year, she got prosthesis on the strength of funding from The Leprosy Mission-Nigeria (TLMN), but […]

Hajara is fighting for her life. She is also fighting the stigma that leprosy has served her. “I’m just waiting for God to take me home,” she says.
Extensive damage to her nerves meant she needed limb amputation, and last year, she got prosthesis on the strength of funding from The Leprosy Mission-Nigeria (TLMN), but even that funding seems uncertain.
While Hajara battles stigma, her condition – same as thousands living with or affected by leprosy throughout the country – is neglected.
“Leprosy is not something that people want to rush to,” says Dr. Sunday Udo, coordinator of TLMN, one of four groups that help Nigeria’s national leprosy control programme provide care and support for survivors. “They [survivors of leprosy] are neglected among the neglected.”
For the second time in a row, a fundraiser to garner local funding for leprosy care has drawn a slim crowd and even tinier donations.
Its first-ever fundraiser last year garnered only N810, 000, compared with a target N5 million.
“If this was HIV or tuberculosis, you would see everybody jumping around,” Udo says. Last year, the money put 72 children in school – 20 in primary, 52 in secondary – and paid school fees, bought uniforms and books. “This year, we are looking to use the money to provide artificial limbs, crutches, wheelchairs,” he adds.
Abubakar Alhassan can chase around his three children on a pair of crutches. His wife Binta rolls around in a wheelchair to keep strain off her amputated leg. Their fingers are damaged from a long battle with leprosy.
The family is part of a growing community of hundreds who have survived leprosy, living in Dakwa, an outlying neighbourhood of the Federal Capital Territory (FCT). Many more live in isolated communities in Alheri, also in the FCT, and across states where groups work on leprosy.
Last year, artiste Chika Okpala – popularly known as Zebrudaya, Alias 4:30 – railed on their behalf at a fundraiser. He spoke about Nigerians turning an eye when affected people thrown out of homes and into “colonies” approach speeding cars to ask for alms along highways throughout the country.
At present, the children’s schooling, and any attempts to strip away the stigma of leprosy and aspire to a future of independence and self-worth depends on charity.
TLM, which works in 30 countries, raises most of its funding from outside Nigeria, but its Nigeria affiliate took up a challenge. “The [governing] board said why must we sit here – we are a big country, a big economy – and these are our people and we are waiting for the US, UK, Canada, Australia,” explains Udo.
“We deliberately decided that we will not give our entire budget out to be funded, that we will look inward and look for people in country, among ourselves, task ourselves and raise money to meet our commitments.”
The commitments could cost a budgeted N145 million a year: to detect and cure 5,000 new cases of leprosy each year and prevent disability in 3,000 more; increase socioeconomic empowerment for a target 18,000 among more than 200,000 affected by leprosy and living in extreme poverty.
It could also see 7,000 children like the Alhassans are enrolled and kept in school yearly while advocacy goes on to eliminate the stigma they live with.
The federal government last year allocated N435.1 million for tuberculosis and leprosy referred hospital and training. Only N45 million was allocated for capital spending, the rest went in recurrent expenses.
Minister of state for health, Dr. Osagie Ehanire, attended the fundraiser, and told Daily Trust the government does and has a lot to do, but “attention to neglected diseases [like leprosy] is not left out.”
He added that: “Fundraising for a good cause is something that goes on all over the world. I do think it is something to be praised that there are people who volunteer to give time and raise funds to carry out such activities to assist society and assist government to take care of its people.”
The gulf between N810, 000 and N5 million is a hurdle for Hajara and the Alhassans – along with an estimated 4,000 new cases detected every year.
“It looks small, like you might be discouraged, but we believe that you should not despise the days of little beginnings,” says Udo. “We believe it will always grow, it will keep growing. We believe we can make this work, and even to the point that we can even support other countries.”