Journey of empowerment: a case study of the Association of People Affected by Leprosy (APAL), India

Strengthening the participation of persons affected by leprosy in the provision of leprosy services has been strongly supported by World Health Organization.1 The Bangkok Declaration2 and the more recent WHO Global Leprosy strategy (2016-2020) urged governments and national programmes to respond.3 However, this was never going to be a simple task, and there is a need to document both process and outcomes, provide feedback on the lessons learned, and disseminate the results to a wider audience, in order to expand the process. In India, previous experience, particularly regarding HIV and AIDS, informed us that an empowerment paradigm usually shifts progressively from an initial focus on ‘securing a voice’ and ‘building the capacity of individuals and communities to promote health’, towards ‘inclusion’ and ‘representation’ at local, national and international forums, and finally ‘collective transformation and mobilization for health’.4–6 This framework of progression within an empowerment paradigm, as shown in Figure 1, has been helpful as we considered the involvement of persons affected by leprosy in the leprosy services as well as in leprosy control programme and strategies.