Changes in stigma and discrimination of onchocerciasis in Africa

Forms of onchocerciasis-related stigmatisation, following over 10 years of implementation of community directed treatment with ivermectin (CDTI), were documented through a survey conducted between September and November 2009 to look at perceived changes in stigma over the past 7-10 years. We documented people's perceptions towards stigma before and after the introduction of CDTI from 1600 structured interviews with households selected from the community treatment registers; in-depth interviews with 57 community leaders, community directed distributors and health personnel; 33 focus group discussions with male and female community members in different age groups (18-24, 25-54 and ≥55 years) and 13 case studies. People with onchocercal skin disease (OSD) with rough skin, swellings and rashes were the most stigmatised. People still fear sexual intimacy with infected persons. In the past, people with OSD were considered unclean and stigmatised because of fear of OSD transmission and embarrassment. People who had lived in the community less than 5 years tended to stigmatise OSD patients more than those people who had lived in the community for longer than 5 years. The youth stigmatised the most. Although stigmatisation persists, avoidance of people with OSD decreased from 32.7% to 4.3%. It is notable that treatment availability has improved relationships between healthy people and those with OSD symptoms in endemic communities and this can be attributed to CDTI. Health education should be emphasised in the communities during distribution.