Abstract
Sickle cell disease is a progressively debilitating genetic condition that affects red blood cells and can result in a variety of serious medical complications, reduced life expectancy, and diminished quality of life. Medicaid nationwide covered 66 percent of sickle cell disease hospitalizations in 2004 and 58 percent of emergency department visits for the disease between 1999 and 2007. Using Medicaid data from four states with large populations that account for more than one-third of Medicaid program enrollment, we examined the characteristics of those with sickle cell disease. We found instances of mortality rates more than nine times the age-adjusted population average (in Texas, a mortality rate for Medicaid enrollees with SCD of 1.11 percent compared to 0.12 percent overall); rates of disability-related eligibility–which is associated with long-term Medicaid enrollment–of up to 69 percent; and half or more of affected enrollees having (all-cause) hospital stays, emergency department visits, and opioid prescription fills. With gene therapies on the horizon that will spur discussions of treatment coverage, costs, and outcomes for people with sickle cell disease, it is important for relevant stakeholders to understand the affected populations.
Highlights
Sickle cell disease (SCD) is a genetic disorder that affects the structure and life span of red blood cells, thereby impairing blood flow and causing other issues such as blood vessel damage
Because Medicare is the primary payer of drug and acute care costs for these individuals, Medicaid spending and utilization figures reported here for SCD enrollees exclude dual eligibles
Individuals with SCD tend to maintain their Medicaid coverage over time. Among those enrolled in a given year, the analysis shows that about percent (87 percent in California, percent in Florida, and percent in both New York and Texas) were enrolled the prior year
Summary
Sickle cell disease (SCD) is a genetic disorder that affects the structure and life span of red blood cells, thereby impairing blood flow and causing other issues such as blood vessel damage. This results in episodes of severe pain and a variety of potentially life-threatening health problems that include acute chest syndrome (a form of lung injury) and stroke, as well as kidney disease and other chronic complications that lead to progressive organ damage [1]. 100,000 individuals in the United States are estimated to have SCD, with potentially more than 90 percent being African American [2]. Deficiencies in quality of care for the population with SCD are welldocumented and include poor access to knowledgeable health care providers, inadequate
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