Stepping Systematically Forward Toward Health Equity in Sickle Cell Disease

Abstract

The dynamic process of transitioning from pediatric to adult health care for people with sickle cell disease (SCD) is complicated by challenges that lie at the intersectionality of medical, social, economic, and environmental factors. Sickle cell disease is a biologically based inherited blood disorder that can be traced to geographic origins. It is not race limited, yet it is unquestionably associated with racism, bias, and inequity. Systems-based inequities in drug development, discordant allocation of resources, access to care, treatment of pain, and quality of care contribute to poor health care outcomes for people living with SCD. Collectively, these complex drivers of disparities, many of which originate from systems of power and have considerable overlap with the social drivers of health, impact quality of life for those with SCD throughout the life course.Thanks to advancements in science over the last half century, including the implementation of universal newborn screening, prophylactic penicillin, vaccinations, and hydroxyurea, the early mortality once seen in SCD has been dramatically reduced, at least in developed countries. 1 The average life expectancy for people with SCD in the US now extends into the fifth decade of life and most patients will now spend more time in adulthood than in childhood. 2 As such, the need for adult health care professionals with comprehensive expertise in caring for people living with SCD is greater than ever, yet still insufficient. Antecedent to the actual transfer of care of a pediatric patient to an adult professional, pediatricians are tasked with assessing, preparing, and educating patients about the process of health care transition and can be guided in these efforts by several existing models designed to structure the process.

The Physician’s Calling and Science Promote Health Equity and Outcomes

“…To the Editor The article by Prussien and colleagues presents an updated Social-Ecological Model of Adolescent and Young Adult Readiness for Transition to Promote Health Equity (SMART-E) that challenges the physician to address a wide range of broadly defined effectors of health, well-being, and readiness to transition from pediatric to adult care and the spectrum of disparities that influence health equity and lifelong health outcomes. The article and associated Editorial raise profound questions at the heart of the physician’s calling and the practice of medicine and science.…”