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Subcommittee advances bill to add Kleefstra syndrome to TennCare coverage list
Summary
The TennCare Subcommittee voted unanimously to advance House Bill 502, which directs the TennCare Division to provide diagnosis and treatment coverage for Kleefstra syndrome in the same manner as autism spectrum disorder and Down syndrome.
Chairlady Littleton explained House Bill 502 and won unanimous committee support to send it to the full Insurance Committee.
"As amended, this authorizes the division of TennCare to provide coverage and benefits on behalf of an enrollee for the diagnosis including genetic testing and the treatment of kleistra syndrome in the same manner and to the same extent that the division provides coverage for autism spectrum disorder, Down syndrome, and other similar or related genetic disorders when determined to be medically necessary," Chairlady Littleton said.
The bill, as Chairlady Littleton described it, would make Kleefstra syndrome — a rare genetic disorder she said is characterized by intellectual disability, childhood hypotonia, severe expressive speech delay and distinctive facial appearances — explicitly eligible for TennCare coverage on the same terms used today for autism and Down syndrome. Littleton said families in her district asked for the designation; she told the committee there are "only 8 of these in the state of Tennessee and less than a thousand across the United States." She added, "they want it to be described as Kleefstra instead of autism or Down syndrome," so they may receive the same services under TennCare.
Committee members approved an amendment identified in the record as Amendment 3665; the amendment was described in the hearing as changing wording from "shall" to (transcript) "me." The committee then voted to advance the bill. Madam Clerk reported a 6-0 vote in favor.
The subcommittee took the action without further changes to benefits or service levels; Littleton said the bill does not change the services TennCare provides but clarifies that Kleefstra syndrome should be identified and treated the same as other named genetic disorders when medically necessary. The measure now goes to the full Insurance Committee for further consideration.
Votes at a glance: House Bill 502 — amendment 3665 adopted; committee vote reported as 6 ayes, 0 nays; outcome: advanced to full Insurance Committee.
