Bill > HB0502

This bill aims to require TennCare (Tennessee's Medicaid program) to provide coverage and benefits for individuals with Kleefstra syndrome, a rare genetic disorder caused by a mutation or deletion in the EHMT1 gene. The bill defines Kleefstra syndrome as a condition affecting multiple body systems and characterized by symptoms such as developmental delay, intellectual disability, distinctive facial features, speech and hearing disorders, seizures, gastrointestinal issues, respiratory infections, autism, obesity, and organ defects. Specifically, the bill mandates that TennCare provide coverage for diagnosis (including genetic testing) and treatment of Kleefstra syndrome in the same manner as coverage for other genetic disorders like autism spectrum disorder and Down syndrome. The coverage may include early intervention services aimed at improving the enrollee's quality of life and development, such as appropriate therapies, medications, educational programs, treatments, and necessary medical equipment. Additionally, the bill authorizes the TennCare director to apply for federal waivers as needed to implement these provisions. The bill is set to take effect on July 1, 2025, with the goal of supporting individuals and families affected by this rare genetic condition.

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https://wapp.capitol.tn.gov/apps/Billinfo/default.aspx?BillNumber=HB0502&ga=114