“Into the Lion’s Den”: COVID-19 Experiences of Black Adults with Sickle Cell Disease

Abstract

Adults living with sickle cell disease are at risk for experiencing severe illness from coronavirus disease 2019 (COVID-19) due to the complexity of their disease. Additionally, self-management and navigating the healthcare system may be challenging during the COVID-19 pandemic. Therefore, we conducted telephone interviews with 25 participants to explore the experiences of Black adults living with sickle cell disease during the early months of the pandemic in the United States. Three overarching themes characterize their experiences: management of sickle cell disease was further complicated by the pandemic, fear of the virus contributed to physical and social isolation, and employment and financial challenges affected well-being. The pandemic contributed to changes in health care maintenance and had a disproportionate impact on this population. Addressing social and structural determinants of health and disruptions in health care accessibility is critical to advancing health and health care equity for individuals living with sickle cell disease.