The Buffalo Lupus Project: A Community-Based Participatory Research Investigation of Toxic Waste Exposure and Lupus

Abstract

Purpose – We designed a community-based participatory research project to investigate a perceived cluster of lupus in a historically contaminated African-American neighborhood. The purpose of the Buffalo Lupus Project was to investigate the high prevalence of lupus in the East Buffalo area and whether cases of disease were linked to chemicals found at a nearby New York State Superfund site.

Methods – The project's research activities consisted of a registry to assess the city-wide prevalence of lupus and other autoimmune diseases and a survey to investigate common environmental factors. Lupus prevalence in the area of concern corresponded to seven times greater risk of the disease compared with the general population. The majority of survey participants were African-American women. Almost all survey participants reported some type of potentially harmful residential exposure.

Results – The Buffalo Lupus Project identified an excessive number of people with lupus and other autoimmune diseases residing in an area plagued with multiple sources of toxic waste exposure.

Social implications – As shown by this project, engaging the community in research and involving the community members in actions to improve their neighborhood can positively impact environmental quality. This study also played a leadership role in advocating for site cleanup and continuing legislation to support lead screening.

Citation

Williams, E.M., Tumiel-Berhalter, L., Anderson, J., Crespo, C., Muneer Hassan, R., Ortiz, K. and Vena, J. (2012), "The Buffalo Lupus Project: A Community-Based Participatory Research Investigation of Toxic Waste Exposure and Lupus", Notaro, S.R. (Ed.) Health Disparities Among Under-served Populations: Implications for Research, Policy and Praxis (Advances in Education in Diverse Communities, Vol. 9), Emerald Group Publishing Limited, Leeds, pp. 159-175. https://doi.org/10.1108/S1479-358X(2012)0000009011