Between January and May 2022, Saksham Kushthanteya Swabhimani Sanstha (SKSS), a community-based organization of persons affected by leprosy, carried out a project to collect data on the impact of leprosy and COVID-19 on the lives of persons living in tribal/rural communities in the Chandrapur and Gadchiroli districts of Maharashtra, India. The project was funded by a grant from the Sasakawa Health Foundation as part of its Don’t Forget Leprosy campaign and implemented with technical support from SKSS’s partner organization, ALERT India. 

The 5-month project involved a workshop to develop survey tools and a survey plan; orientation and capacity-building for field investigators; a survey; and a workshop to plan post-survey interventions.

The districts where the survey was conducted, Chandrapur and Gadchiroli, are among the top 10 leprosy-impacted districts in India. A total of 1,910 participants were reached through personal interviews and focus group discussions, including 595 persons affected by leprosy, 605 family members, and 640 members of the general population (as a control group).

Regarding the health impact of COVID-19, only 2% of persons affected by leprosy and their family members had been infected by the virus versus 7% of the control population (self or family). However, health service accessibility was affected by the pandemic, and 10% of respondents with lepra reaction and 9% with disability said that there had been disruptions to the supply of medicines or leprosy-related services. 

Most of the persons affected by leprosy who were interviewed belong to the lower socio-economic strata of society. More than half of them do laboring jobs to earn a living, and only 11% have a family income of more than 10,000 rupees per month. Their sources of livelihood were badly disrupted during the pandemic; 14% said that their income has yet to return to pre-pandemic levels. 

The study also confirmed the existence of stigma and discrimination, with 23% (138/595) of persons affected by leprosy saying that they experienced it, either recently or in the past. Their experiences include being isolated within the family and being pressured to stay in a colony. Nearly half of those reporting stigma and discrimination (62/138) experienced it in relation to marriage, including being abandoned by a spouse and rejection while looking for a life partner for themselves or a family member.

Participating in the project has strengthened SKSS as an organization and improved its capacity to undertake field-level, evidence-based intervention projects. The organization is planning to use the results in advocacy with policy makers.