Barriers to leprosy elimination in Bolivia: Exploring perspectives and experiences of medical professionals and leprosy patients–A phenomenological study

Background: Leprosy elimination has recently re-entered the global health sphere, with the World Health Organisation’s (WHO) “Towards zero leprosy” strategy (2021–2030). Previously, its elimination had been defined as a prevalence of less than 1 case per 10,000, which was achieved on a global scale in 2000, leading to a large withdrawal of resources from leprosy control and to neglect on both global and national scales. Despite this, leprosy continued to spread and affect hundreds of thousands of people annually. Methods: The study explores the barriers to leprosy elimination in Bolivia, using a phenomenological approach, to discover the perceptions and experiences of leprosy patients and medical professionals regarding leprosy in Bolivia. It also explores the role of active case finding (ACF) for leprosy elimination in Bolivia. In-depth semi-structured interviews were conducted in Spanish, mainly at Jorochito Dermatological Hospital, the national referral centre for leprosy in Bolivia. Results: Barriers to leprosy elimination in Bolivia are present at provider, patient, governmental, societal and community levels. These include poor health financing, untrained workforce, poor treatment adherence, centralised organisation of leprosy diagnosis and treatment and health illiteracy. Conclusion: The barriers to leprosy elimination in Bolivia are complex, interconnected and embedded in Bolivian society. Leprosy elimination must be given priority on global and national scales to increase funding and importance, to continue ACF activities, and to promote national solutions for sustainable leprosy control. Author summary: Leprosy is a disease that has been eliminated in higher income countries but persists in lower income countries. This qualitative study explores the reasons that leprosy persists in Bolivia, by learning from the lived experiences of leprosy patients and medical professionals. 17 interviews were conducted in total; 12 with leprosy patients and 5 with medical professionals. The study also explored the role that Active Case Finding (ACF) plays in eliminating leprosy. ACF is a method of finding leprosy cases that can involve medical professionals examining high risk groups and searching for signs of leprosy. The study gave rise to a range of reasons that leprosy remains in Bolivia, termed “barriers to leprosy elimination” in the study, including (1) health system factors; (2) health service factors; (3) individual-related factors; (4) governmental neglect and NGO dependency; (5) weaknesses of the National Leprosy Programme and current leprosy control strategies; (6) societal stigma; and (7) lack of public knowledge. The study also found that ACF is an important strategy that must be prioritised to ensure that leprosy is eliminated in Bolivia.