‘I Know What I Feel:’ Caring for Patients with Sickle Cell Disease in a Post-Cure World

Abstract: We propose a panel that uses storytelling as part of a Black Bioethics Framework to give voice to the lived experience of patients with Sickle Cell Disease (SCD), highlighting how their racial identity and medical trauma correlate to poorer health outcomes post-cure. For more than a century since SCD was first identified, advances in gene-editing therapy and bone marrow transplants are finally providing curative options. Even if cured of the original disorder, SCD patients seeking care for chronic pain due to persisting physical damage from the disease may experience being wrongfully dismissed, accused of drug seeking, or feel disempowered. This interdisciplinary panel session will feature reflections from a SCD patient, nurses, and a medical sociologist as well as recommendations of ways to address interpersonal and structural barriers to adequate pain management. The panel will begin with a brief discussion of trust and epistemic oppression by a philosopher and will conclude with a moderated questions and answer section. The purpose of this panel is to center the narratives of SCD patients in scholarship and clinical practice, so that our pursuit for equitable care can be more responsive to the various injustices they experience.