Bill > SB0522

This bill amends Tennessee's TennCare (the state's Medicaid program) to require coverage for individuals with Kleefstra syndrome, a rare genetic disorder caused by a mutation in the EHMT1 gene. The bill defines Kleefstra syndrome as a condition affecting multiple body systems and characterized by developmental delays, intellectual disabilities, distinctive facial features, speech and hearing disorders, seizures, gastrointestinal issues, respiratory infections, autism, obesity, and organ defects. The bureau of TennCare would be required to provide coverage for diagnosis (including genetic testing) and treatment of Kleefstra syndrome, similar to how it currently covers other genetic disorders like autism spectrum disorder and Down syndrome. The coverage could include early intervention services aimed at improving the enrollee's quality of life and development, such as appropriate therapies, medications, educational programs, treatments, devices, and equipment. The bill also allows the TennCare director to apply for federal waivers as needed to implement these provisions. The legislation is set to take effect on July 1, 2025, with the stated purpose of serving the public welfare by supporting individuals with this rare genetic condition.

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https://wapp.capitol.tn.gov/apps/Billinfo/default.aspx?BillNumber=SB0522&ga=114