Introduction
Leprosy remains a serious public health concern in Nigeria, with over 3500 people diagnosed each year and approximately 25% of these patients suffer from one form of disability or the other . Before Nigeria’s independence in 1960, Nigeria had a leprosy prevalence of more than 20% . In conformity with existing global thinking and practice at the time, leprosy communities were developed to preserve public health and provide relief to men and women suffering from the disease.
Even though Nigeria achieved the national leprosy elimination target of less than 1/10,000 population in 1998 , some factors like culture, behavioural patterns, and social determinants, among others, are still contributing to more leprosy cases Tuberculosis and Leprosy Control Program (NTBLCP) started as a program in 1989 . Between 1991 and 2012, 111,788 leprosy patients were effectively treated with MDT (Multi-Drug Resistant Treatment), and the country was also able to meet another target which is the WHO eradication target of fewer than one case per 10,000 people in 2000 . With a case detection rate of less than 5% per 10,000 persons, Nigeria is currently classified as low endemic for leprosy, however, at the sub-national level, there are areas of “high endemicity” where leprosy prevalence remains at up to 1 instance for every 10,000 persons .
In 2019, 10% (20,205) of global leprosy cases were recorded in Africa with Nigeria and 12 other countries reporting 1000 – 10,000 cases . Studies from high leprosy endemic countries have shown that leprosy shows marked uneven geographical distribution even within the smallest community groups such as villages and households . This is one of the motivations for this research as people living with leprosy are mostly living in isolated communities outside main towns and cities.
Some other motivation for this study is the lack of publication and inadequate conversation about the level of care available for people living with leprosy in Nigeria. In Nigeria, we cannot compare the level of reporting tuberculosis gets to that of leprosy even by the National TB and Leprosy Control Programme (NTBLCP). The National Tuberculosis and Leprosy Control Program (NTBLCP) is an integral part of the Nigerian Ministry of Health with the role of coordinating and implementing national strategies, policies, and programs for the control and management of tuberculosis (TB) and leprosy in Nigeria. Some of the program’s responsibilities encompass policy development, strategic planning, program coordination, capacity building, monitoring and evaluation, advocacy and awareness, and research and innovation. Meanwhile, the level of stigma and disdain experienced by some people living with leprosy is so disheartening as leprosy is seen as the most terrible and despised disease in some areas of Nigeria .
The stigma has long-term negative consequences for people with disabilities, including loss of employment, social ties, and reputation, difficulties finding a life partner, divorce, and discrimination . As a result, leprosy is frequently referred to as a social killer The stigma associated with leprosy is sometimes more distressing than the disease itself . Some leprosy patients have frequently described how they are denied some social and economic opportunities. Some are also rejected by family members and society. These events have repercussions on their psychological health. Some because of stigma and disdain, therefore, postpone receiving treatment until difficulties appear .
Nigeria through the Federal Ministry of Health and the National Tuberculosis and Leprosy Program and partners has successfully treated over 33,000 leprosy patients across the country since 2009 till date; this has been made possible through funding from donors and non-governmental organizations . International Federation of Anti-Leprosy Associations (ILEP) is a consortium of organisations that provides relief and rehabilitation services to persons affected with leprosy and their efforts are complemented by efforts from other organizations outside ILEP. ILEP organisations include; The leprosy mission, Nigeria (Coverage is nationwide), the Damien Foundation (Covers the South-Western states and Kwara state with a coverage population of over 56 million people), and DAHW German Leprosy and TB Relief Association (area of coverage is South-East and South-South, Nigeria) . Nigeria has made some level of progress in the fight against leprosy. However, to record tangible progress there is a need for the Nigerian government to increase its commitment to leprosy control and elimination by working alongside partners to ensure effective and sustainable leprosy control in line with the 2021-2025 global leprosy strategy .This study explored the experiences of people living with leprosy, the experiences of healthcare workers, and the conditions of living in the leprosy settlements.