Sickle Cell Disease: Discussing Disparity

There is much debate about the contribution of racial and ethnic disparities to health outcomes. Health disparities are produced on at least three different levels: differential quality of care within a health care system, access to health care, and differences in exposures and life opportunities that create different levels of health and disease. The result often translates to less than optimal productivity, higher health-care costs, and social inequity. Though sickle cell disease (SCD) is not often discussed in the disparity context due to the inherited hemoglobin disorder's disproportionate effect on minority communities, many common themes of disparity including limited access to quality health care can be found. Racism is rarely acknowledged as the main cause of these inequities. Racism is a system of structuring opportunity and assigning value based on the social interpretation of phenotype and operates on three levels: institutionalized, personally-mediated, and internalized. Examples in SCD include gaps in public and private support for research and clinical care, comparative lack of political investment, assumptions of drug seeking behavior, pain crises not being believed and often ignored, and a general lack of confidence in the medical system to adequately serve people living with SCD. Though SCD has been studied extensively at the molecular level, there has been minimal headway in the uniform implementation of care. Acknowledging and confronting racism will be necessary in order to remove the systematic racial biases that affect individuals with SCD and more traditional disparate populations; perhaps resulting in a more empowered and optimistic patient population.