New ASH initiatives to improve patient care in the long-overlooked sickle cell disease

Abstract

AbstractBecause of the unique biology of sickle cell disease (SCD) as well as the societal disadvantages and racial inequities suffered by these patients, individuals with SCD have not benefited from the same remarkable advances in care and therapeutics as those with other hematologic disorders. Life expectancy of individuals with SCD is shortened by ∼20 years even with optimal clinical care, and infant mortality continues to be a major concern in low-income countries. As hematologists, we must do more. The American Society of Hematology (ASH) and the ASH Research Collaborative have instituted a multipronged initiative to improve the lives of individuals living with this disease. Here, we describe 2 components of this ASH initiative, the Consortium on Newborn Screening in Africa (CONSA) to improve the early diagnosis of infants in low-resource countries and the SCD Clinical Trial Network to accelerate the development of more effective therapeutics and care for those with this disorder. The combination of SCD-focused initiatives, ASH Research Collaborative, CONSA, and Sickle Cell Clinical Trials Network has enormous potential to dramatically alter the course of SCD worldwide. We believe that the timing is ripe to embark on these critical and worthwhile initiatives and improve the lives of individuals with this disease.