HB 502 - SB 522
FISCAL NOTE
Fiscal Review Committee
Tennessee General Assembly
February 14, 2025
Fiscal Analyst: Chris Higgins | Email: chris.higgins@capitol.tn.gov | Phone: 615-741-2564
HB 502 - SB 522
SUMMARY OF BILL: Requires the Division of TennCare (Division) to 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 Division provides coverage
for autism spectrum disorder, Trisomy 21 or Down syndrome, and other similar or related genetic
disorders.
Establishes that such coverage and benefits must include, without limitation, early intervention and
promoting improvements to the enrollee's quality of life and development throughout the life of the
enrollee.
FISCAL IMPACT:
NOT SIGNIFICANT
Assumptions:
• The Division currently provides coverage for treatment related to Kleefstra syndrome that
is deemed medically necessary.
• The proposed legislation would require certain coverage and benefits for Kleefstra
syndrome to be provided without limitation.
• According to the National Organization for Rare Diseases, as of 2023 fewer than 1,000
people had been diagnosed with Kleefstra syndrome in the United States.
• Based on information provided by the Division, there are no documented cases of an
enrollee with a Kleefstra syndrome diagnosis.
• It is unknown whether an enrollee will require treatment for Kleefstra syndrome in the
future that exceeds the Division's current level of coverage, or to what extent.
• Based on the low level of incidence, any impact to the Division as a result of the proposed
legislation is estimated to be not significant.
IMPACT TO COMMERCE:
NOT SIGNIFICANT
Assumption:
• The impact to commerce or jobs in Tennessee is estimated to be not significant.
HB 502 - SB 522 2
CERTIFICATION:
The information contained herein is true and correct to the best of my knowledge.
Bojan Savic, Executive Director