Discussing Sickle Cell Research and Care with Dr. James Taylor VI, MD

This episode was originally released on December 22, 2021 | In honor of National Sickle Cell Awareness Month, Holland & Knight's Public Policy & Regulation Group is proud to partner with the Black Women's Health Imperative (BWHI) for a four-part podcast series on sickle cell disease. Sickle cell disease is a genetic disease that causes red blood cells, which are normally round, to become C-shaped like a sickle. It is a progressive and debilitating disease that can cause pain crises, organ damage and a shortened lifespan, and it disproportionately impacts communities of color, occurring in approximately one in every 365 Black or African American individuals in the United States.This episode is co-hosted by Holland & Knight Senior Policy Advisor Shawna Watley, Chief Policy Officer & Counsel for BWHI Tammy Boyd and Senior Director for Alliance Development and Government Affairs at bluebird bio Sonya Elling. They are joined by the Director of the Center for Sickle Cell Disease at Howard University, Dr. James Taylor VI, MD who shares insight about the mission and history of the center. He explains what sickle cell centers are, describes why they are so rare in the United States and illustrates how their increased existence could change the course of healthcare for people living with sickle cell. This discussion explores legislation related to sickle cell disease, including the National Sickle Cell Control Act which is celebrating its 50th anniversary next year. Dr. Taylor provides an overview of how funding for sickle cell research and clinical care has historically been distributed, highlighting the disparities in comparison to diseases like cystic fibrosis. During this episode, the group also focuses on discrepancies in care for people with sickle cell when transitioning from pediatric to adult care and how policies can work to better support adults with sickle cell.