SB 522

Kleefstra syndrome is a rare genetic condition that affects development and involves many body systems. People with Kleefstra syndrome usually have distinct facial features, developmental delay, intellectual disability, low muscle tone (hypotonia), and communication difficulties. Kleefstra syndrome is caused by a mutation in a gene called E H MT1 or the deletion of a specific region of chromosome 9 that includes EHMT1. Other names for Kleefstra syndrome include 9q-syndrome, 9q34.3 deletion syndrome, and chromosome 9q deletion syndrome. Kleefstra syndrome causes a range of symptoms that can d iffer from person to person, which may include microcephaly; seizures; hearing loss; wide, short skull (brachycephaly); limited or absent speech; autism spectrum disorders; heart defects; sleep disorders; kidney defects; gastrointestinal problems such as g astroesophageal reflux (GERD); protruding jaw; single eyebrow; widely spaced eyes; rolled out lips; large tongue; nostrils that open out; and high birth weight and childhood obesity. In some cases, symptoms may include severe respiratory infections. Chi l dren with Kleefstra syndrome may have trouble communicating or interacting socially. Some adolescents may lose interest (apathy), lose developmental skills (regression), or become unresponsive (catatonic). This bill requires the bureau of TennCare to pr ovide coverage and benefits on behalf of an enrollee for the diagnosis, including genetic testing, and treatment of Kleefstra syndrome in the same manner and to the same extent that the bureau provides coverage for autism spectrum disorder, Trisomy 21, or Down syndrome, and other similar or related genetic disorders. Such coverage and benefits must include early intervention and promoting improvements to the enrollee's quality of life and development throughout the life of the enrollee through appropriate modalities of therapy, appropriate medications, and other interventive programs, education, treatments, clothing, devices, and equipment. The director of TennCare may apply for a federal waiver as the director deems necessary to effectuate this bill. ON MARCH 10, 2025, THE HOUSE ADOPTED AMENDMENT #1 AND PASSED HOUSE BILL 502, AS AMENDED. AMENDMENT #1 makes the following changes:  Revises the requirement that the bureau provide coverage and benefits on behalf of an enrollee for the diagnosis, including genetic testing, and treatment of Kleefstra syndrome in the same manner and to the same extent that the bureau provides coverage for autism spectrum disorder, Trisomy 21 or Down syndrome, and other similar or related genetic disorders to, instead, be permissive instead of required and only permissive when determined to be medically necessary.  Revises the requirement that c overage and benefits as described above must include, without limitation, early intervention and promoting improvements to the enrollee's quality of life and development throughout the life of the enrollee through a ppropriate modalities of therapy , a ppropriate medications , and o ther interventive programs, education, treatments, clothing, devices, and equipment to, instead, be permissive instead of required.