Whiteout: a social history of sickle cell disease in Ontario, Canada

Abstract

ABSTRACT What does it mean to develop health policies and services for diseases that are socially constructed as racialized in a country that continuously erases race? Sickle Cell Disease (SCD), the world’s most common genetic disorder, is receiving increased policy attention as a multi–system blood disorder that disproportionately impacts Black communities in the province of Ontario, Canada. In January 2023, Ontario Health launched the quality standard, Sickle Cell Disease: Care for People of All Ages (SCD Quality Standard), positioning this document as an expression of the Province’s commitment to Black health. While the SCD Quality Standard aims to redress institutional neglect, it is vulnerable to claims that it is ahistorical. This commentary therefore seeks to historicize the SCD Quality Standard by tracing the social history of SCD in Ontario during welfare state expansion and devolution. In doing so, this commentary locates the SCD Quality Standard within Canada’s colonial master narrative as a white liberal democracy. Concepts of bounded justice are drawn on to examine Ontario’s racialized responses to SCD and the limitations of health policy-making for social justice.