Long Island has 'high burden' for common blood disorder: study

Key Points:

• Approximately 100,000 Americans have sickle cell disease (SCD), with about 10% living in New York State, primarily in New York City, according to NYU researchers analyzing hospitalization data from 2009 to 2022.
• Long Island, despite fewer hospitalizations than NYC, had the highest percentage (10%) of SCD hospitalizations with major risk of death and the highest total hospital charges, indicating a significant disease burden and possibly more complex cases or care differences.
• The study found that central New York had the longest average hospital stays for SCD patients, while NYC had shorter stays and fewer major risk cases; hospitalizations with major severity and mortality risk increased markedly from 2009 to 2022, partly due to COVID-19 disruptions.
• Most hospitalized SCD patients in New York were Black (83%), with young adults (18-29) representing the largest group, highlighting challenges in transitioning from pediatric to adult care.
• Researchers emphasize the need for improved regional care strategies, increased specialist access, provider education, updated public health policies, and expanded therapy availability, noting that Long Island is pioneering advanced treatments such as gene therapy that have successfully cured SCD in individual cases.