These data consist of information on economic, social, demographic, cultural, and treatment seeking behaviour collected from former and current human African trypanosomiasis (HAT) patients in Eastern Zambia between 2004 and 2014. There are two data sets. The first dataset consists information on the economic and social impact of HAT. Information on demographics, culture, and treatment seeking behaviour was also collected. Data for this dataset were collected through structured questionnaires administered to patients themselves or their close relatives (care giver). The questionnaires were developed and delivered by experienced researchers from the University of Zambia. The data have been anonymised by removing the names of villages where the patients lived. In total, 64 cases were included in the study. Verbal consent was obtained prior to commencing all questionnaires. The second dataset consists of anonymised transcripts of focus group discussions conducted with health workers, people who have suffered from HAT and their relatives or friends. Seven to ten people were included per discussion group, providing information on concepts, perceptions and ideas relating to the social consequences of HAT. A total of eight focus group discussions were conducted during the study. Focus group discussion data were analysed using inductive approaches and thematic coding carried out by two independent researchers. All transcripts were anonymised and personal identifiers were removed to protect patients' individual data. Verbal consent was obtained prior to commencing all interviews. Focus group interviews were carried out by experienced researchers from the University of Zambia. The data were collected to determine the economic and social consequences of human African trypanosomiasis (HAT) in Eastern Zambia. This research was part of a wider research project, the Dynamic Drivers of Disease in Africa Consortium (DDDAC), and these data contributed to the research carried out by the consortium. The research was funded by NERC project no NE/J000701/1 with support from the Ecosystem Services for Poverty Alleviation Programme (ESPA). Full details about this dataset can be found at https://doi.org/10.5285/6f70d562-8fcf-4ecd-adaf-cbc5800cc326