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SB 522

TennCare - As enacted, authorizes the bureau to provide coverage and treatment 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, when determined to be medically necessary. - Amends TCA Title 56 and Title 71.

114th Regular Session (2025-2026) Introduced by Kerry Roberts

Tennessee expands Medicaid coverage to include diagnosis and treatment of Kleefstra syndrome at parity with autism spectrum disorder and Down syndrome coverage.

Comp. became Pub. Ch. 145
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Bill Summary · SB 522

Legislative bill overview

SB 522 expands TennCare (Tennessee's Medicaid program) coverage to include diagnosis and treatment of Kleefstra syndrome, a rare genetic disorder, with the same coverage level provided for autism spectrum disorder, Down syndrome, and similar genetic conditions. The bill requires coverage when medically necessary and amends Tennessee's health insurance and Medicaid statutes.

Why is this important

Kleefstra syndrome is a rare genetic disorder affecting cognitive development and behavior, and this expansion ensures affected Tennesseans have access to necessary medical care and genetic testing through the state's Medicaid program. The bill reflects a policy decision to treat rare genetic disorders equitably within the state's healthcare coverage framework, potentially improving outcomes for a small but underserved patient population.

Potential points of contention

  • Cost implications: Expansion of coverage for rare genetic conditions may increase TennCare expenditures, though the number of affected individuals is likely small
  • Precedent concerns: Advocates may worry the bill creates pressure to add coverage for numerous other rare genetic disorders on a case-by-case basis rather than through systematic criteria
  • Medical necessity definition: The bill's reliance on "medically necessary" determinations leaves implementation details to the bureau, which could create inconsistency in coverage decisions across similar conditions

Compiled from official sources — confirm details with the bill’s official record.

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