Theme 1: The experiences of people living with and affected by leprosy in Nigeria
People living with Leprosy shared their experiences during the key informant interviews. Their experiences were summarized into sub-themes as follows:
Available funding provisions;
Whilst funding is a growing concern for Neglected tropical diseases, the data from the interview confirmed there is little funding support from the government and other implementing partners in Nigeria for people living with leprosy.
“I’m not sure but there’s an allocation for drugs” - PLWL Taraba State
“I have no idea except for the #5000 monthly payment from the Local Government council” - PLWL from Oyo State
The budgetary allocation of funding from the government to support people living with leprosy is buttressed by supporting organizations who are non-governmental organisations
“I can’t say exactly how much the government has budgeted but I can say that there is a fund set aside for PLWL. There’s a body for TB and leprosy control (NTBLCP) and the body runs a budget but it’s minimal because most people focus on TB but yes there’s funding but I can’t say how much is budgeted exactly ” - Program officer, Damien Foundation
Despite the current treatment support and complementary financial assistance for patients in Oyo state, there is still out-of-pocket expenditure. An interview with the head of programs at TLMN revealed patients spend on managing complications. This gap is now being bridged by non-governmental organizations.
”there’s no specific funding targeted at providing healthcare or a health insurance scheme. Even referral centres owned by the government that only offer leprosy-related services suffer neglect, although leprosy treatment is free. Medications are provided by WHO and it’s supplied to the Healthcare centres. Medications that are used to manage complications due to the use of drugs for treatment like prednisolone are not free so the leprosy mission step in to provide these drugs for the hospitals” - Head of Programs TLMN
“We receive support, the support comes from philanthropists, organizations like NNPC, and well-meaning individuals. The support is always in kind, mostly food items. For education, the Daughters of Charity help our children through secondary education and provide working tools for this who have picked one vocation or another. We receive food donations from NGOs and people that visit.The government of Edo state have been giving us #5000 every month and it has been consistent. Sometimes, we also contribute money amongst ourselves to take care of minor things.” - PLWL Edo State
“People here get about #6000 per month from the FCT council but it’s not regular like before. We also get funding from NGOs and some multinational companies ” - PLWL FCT
”Funding is a continuous thing here in our organizations and PLWL gets a huge portion of our annual operational budget. We also have a reconstructive centre in ogbomoso where they go for pro bono surgeries” - Program manager, Damien Foundation
“From my organization, the leprosy settlements that we cover get support from us regularly like the medical, educational, and rehabilitation support ” - Program officer, Damien Foundation
Condition of inmates at the leper settlements and the state of the settlements
Living with leprosy was widely regarded as a difficult condition by the respondents. The camps lack basic amenities and thus make it unconformable for the patients in the camp.
“Been in the camp for few years, there’s no indication of time to leave the camp. Lifestyle in camp is not encouraging ” - PLWL Abia
“Living in a leprosy camp has not been easy, although the people are friendly and our directors are trying, there’s a shortage of basic amenities like water, food and electricity ” - PLWL Zamfara
“The people in the community are good but our condition of living is bad ” - PLWL Taraba
Renovating and equipping leprosy settlements
‘’‘The damages are reported and it is looked into. mostly, private organizations help with renovations and maintenance - PLWL Taraba
“Our preference as an organization isn’t to keep settlements. We encourage patients to go back to their communities and come for ambulatory care. However, we won’t deny that some people live in these settlements and we make fairly decent renovations that will ease their living there and efforts are supported by civil society organizations like Lion’s club and Rotary club ” - Staff of DAHW
“For shelter, this settlement was built by the government but is being renovated by the ”Daughters of Charity”, and an organization from Germany ” - PLWL Edo State
Stigmatization
“We can’t even go out for any business, because people are afraid to buy from us - PLWL Niger State. A respondent replied, ” I have been living here for 30 years”. It has not been easy, we face a lot of stigmatization and there are no jobs” - PLWL Zamfara