Sickle Cell and Racism
Sickle cell disease predominantly affects Black and Latinx individuals with African ancestry, primarily due to its origin as a gene mutation in response to protecting the body from severe malaria. Despite its recognition for longer than a century, the development of sickle cell disease therapies has faced significant obstacles, largely stemming from insufficient research funding attributed to systemic racism. In stark contrast, cystic fibrosis, a condition primarily affecting individuals of European descent and impacting fewer Americans than sickle cell disease, receives between seven to eleven times more research funding per patient and boasts four times as many U.S. Food and Drug Administration approved drugs.
Beyond the structural racism that impedes research, individuals living with sickle cell disease also encounter interpersonal racism that disrupts their access to, and delivery of, high-quality healthcare. Patients with sickle cell disease often face prejudiced attitudes expressed by healthcare professionals throughout the healthcare system. Tragically, even in the midst of the opioid crisis, individuals with sickle cell disease are sometimes unjustly labeled as drug seekers and accused of exaggerating their pain. This unjust characterization results in inadequate treatment and additional suffering. Many individuals choose to forego seeking medical care due to these challenges and the emotional strain associated with the perceived racial stigma, which ultimately heightens the risk of life-threatening complications.
The Lifespan Comprehensive Sickle Cell Center staff is aware of this history of racism and is committed to directly addressing these historical disparities and embracing an anti-racist approach to enact change for patients. The program promotes a zero-tolerance policy for racism across the hospital system. We are committed to advocating for our patients to reduce the impact of explicit and implicit bias and structural racism. Sickle cell disease is an important priority across the Lifespan system, and we are committed to continuing to improve the care for sickle cell patients seen within our center.
Lifespan's statement on diversity, equity and inclusion in our workforce