Sickle Cell Disease in Social Security Disability Evaluations

Sickle cell disease (SCD), a group of inherited blood disorders affecting approximately 100,000 people in the U.S., is a life-long condition that impacts every organ system in the body. Symptoms and complications vary from mild to severe and can include acute and chronic pain, acute chest syndrome, stroke, and organ damage. The cumulative burden of SCD-related health effects can affect an individual's quality of life as well as their ability to participate in school and work. These factors impact how the Social Security Administration (SSA) determines whether applicants with SCD qualify for benefits.

The SSA tasked the National Academies with convening an expert committee to review the latest published scientific research and address best practices and patient experiences in the management and treatment of SCD. The resulting report, Sickle Cell Disease in Social Security Disability Evaluations, presents the committee's findings and conclusions including the importance of coordinated care and support for patients navigating the transition from pediatric to adult health care.