Bill > A05873

This bill establishes comprehensive provisions for addressing sickle cell disease (SCD) in New York State by creating a statewide registry and mandating specific educational and notification requirements. The legislation requires healthcare providers to notify administrative officers and parents when an infant or child tests positive for SCD, and to provide educational pamphlets that cover genetic counseling, the potential genetic inheritance of SCD trait, and available counseling and intervention services. The bill mandates the creation of a sickle cell disease registry that will maintain records of individuals diagnosed with SCD trait, develop public awareness campaigns, and provide ongoing notifications to patients and parents. The registry will notify parents about follow-up consultations at key stages of adolescence, such as when a patient might engage in strenuous athletic activities or become aware of reproductive implications. Additionally, the bill requires physicians to undergo bi-annual continuing education training about SCD and mandates that the Department of Health issue an annual report detailing the registry's information to various state legislative leaders and the public, with a focus on improving awareness and understanding of sickle cell disease across all racial and ethnic groups in New York State.

Health and Social Services

https://www.nysenate.gov/legislation/bills/2025/A5873