Patients with SCD report how challenging their disease is. All patients with SCD are more likely than age-matched counterparts to experience loss, including workdays for disability, educational potential, workdays for caregivers of affected children, and time spent in the hospital or the emergency department.4,5 These losses, with the concomitant stress associated with chronic illness and the struggle to manage recurrent pain crises and chronic complications, are often overwhelming.
SARS-CoV-2 infection causes mortality as high as 7% in patients with sickle cell disease; the mRNA vaccine series is potentially lifesaving for them.
Comprehensive care can, as we have illustrated in this discussion, mitigate these losses. Such care should include extensive education, genetic counseling, infection prevention, pain management, and implementation of evidence-based management guidelines.3,4,6 Patients with SCD report that their illness outlook would be better with
greater provider knowledge of SCD,
destigmatization of narcotics for SCD vaso-occlusive pain management,
optimal coordination among members of the health care team, and
improved transportation for appointments.
Patients also report that barriers associated with the unique US health care financing system are often insurmountable. As patients with SCD live longer, improved care management should focus on reducing these barriers and enhancing their quality of life.2,18,19
CORRESPONDENCE Robert Allen Perkins, MD, MPH, Department of Family Medicine, University of South Alabama College of Medicine, 1601 Center Street, 2N, Mobile, AL 36604; perkins@health. southalabama.edu
