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

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.

KEYWORDS:

• Anti-Black racism
• health inequalities
• healthy public policy
• sickle cell disease

Acknowledgements

I thank Colleen Johnson for her review of this manuscript as well as her mentorship and support. I am grateful for the invaluable feedback of the two anonymous reviewers for enriching this manuscript. Finally, I am indebted to the contributions of people with SCD and their communities in Ontario.

Disclosure statement

The author is a member of the Advisory Committee for Ontario Health’s Quality Standard Sickle cell disease: Care for people of all ages.

Notes

1. The L1 controversy refers to disputes over the efficacy of L1 between Dr. Nancy Olivieri and the pharmaceutical company, Apotex. The dispute led to a litigious saga that raised critical questions on research integrity, patient safety, academic freedom, university-industry partnerships, and the relationship between medicine and industry (Thompson et al., 2001; Wright, 2017).