FL S1352

Require newborn and infant screening providers to notify primary care physicians of sickle cell hemoglobin variant detections and submit results to the Department of Health for inclusion in a new sickle cell registry.

Establish a sickle cell registry through a contracted community-based medical treatment and research center to track newborns and infants with sickle cell hemoglobin variants and their disease outcome measures.

Require the registry to notify parents and guardians of affected children about recommended physician follow-up consultations at least once during early adolescence and once during late adolescence, with removal options available by form.

Mandate the Agency for Health Care Administration conduct biennial reviews of Medicaid medications, treatments, and services for sickle cell disease in consultation with specified entities, with reports posted publicly and submitted to state officials by November 1, 2024 and every two years thereafter.

Appropriate $1,060,804 in recurring funds and $21,355 in nonrecurring funds to the Department of Health with five authorized full-time positions, and $250,000 in nonrecurring funds to the Agency for Health Care Administration, effective July 1, 2023.