Disparities in Life Expectancy for Individuals with Sickle Cell Disease and Cystic Fibrosis

Recent research from the University of South Carolina's Department of Epidemiology and Biostatistics highlights growing but uneven improvements in life expectancy among people living with sickle cell disease and cystic fibrosis. Despite advancements in medical treatments over the past decade, individuals with sickle cell disease are seeing only modest gains in lifespan, facing higher mortality rates, whereas those with cystic fibrosis continue to experience significant increases in longevity with declining death rates. The study, led by doctoral student Hiluf Abraha and published in JAMA Pediatrics, analyzed data spanning 15 years (2008–2023) from the National Center for Health Statistics. It revealed that the average life expectancy for sickle cell patients has increased from 40 to 46 years, while cystic fibrosis patients' expectancy has risen from 31 to 48 years. Yet, mortality still remains a concern, especially for sickle cell, which predominantly affects Black Americans, with about 100,000 currently living with the condition. In contrast, roughly 35,000 individuals with cystic fibrosis, mostly white, are affected. The decline in mortality for cystic fibrosis has been steady across all age groups, except for those aged 65 and older, where a slight increase was observed, indicating added longevity. Sickle cell disease mortality, however, has increased in most age brackets, excluding the 0-24 age group. The disparities are partly due to under-resourced healthcare systems, limited access to essential therapies, and barriers related to cost and treatment availability. To address these gaps, experts recommend decoupling financial incentives from patient costs by utilizing federally funded programs, such as the Centers for Medicare & Medicaid Services' initiatives to improve access to innovative therapies, including gene and cell therapies. Enhancing Medicaid expansion and health system support could significantly improve outcomes for those with sickle cell disease. Hiluf Abraha, a clinical-trained midwife turned biostatistician and health informatics expert, aims to continue research in this area, motivated by his background and the commitment to health equity. His findings underscore the urgent need for policy reforms and resource allocation to bridge the lifespan gap and provide equitable health outcomes for all individuals affected by these genetic conditions.