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, the official text

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                        ~tate of \!tennessee

                         PUBLIC CHAPTER NO. 145

                                                   HOUSE BILL NO. 502

      By Representatives Littleton, McCalmon, Helton-Haynes, Rudder, Carringer, Hill,
                         Alexander, Bricken, Cepicky, Eldridge, Hardaway, Love

                                        Substituted for: Senate Bill No. 522

                                                    By Senator Roberts

         AN ACT to amend Tennessee Code Annotated, Title 56 and Title 71, relative to
TennCare.

BE IT ENACTED BY THE GENERAL ASSEMBLY OF THE STATE OF TENNESSEE:

          SECTION 1. Tennessee Code Annotated, Title 71, Chapter 5, Part 1, is amended by
adding the following as a new section:

                    (a) As used in this section:

                              (1) "Bureau" means the bureau of TennCare;

                              (2) "Enrollee" means an individual enrolled in TennCare;

                              (3) "Kleefstra syndrome" means a rare genetic disorder resulting from a
                    mutation in the euchromatic histone methyltransferase 1 (EHMT1) gene or a
                    deletion of a region of chromosome 9 that includes the EHMT1 gene that affects
                    multiple organs and functions of the body, including the face, brain, heart, and
                    kidneys, and that is characterized by features, including, but not limited to:

                                        (A) Developmental delay;

                                        (8) Intellectual disability;

                                        (C) Distinctive facial features;

                                        (D) Speech and hearing disorders;

                                         (E) Seizures;

                                         (F) Gastrointestinal disorders;

                                         (G) Respiratory infections;

                                         (H) Autism;

                                         (I) Obesity; and

                                         (J) Organ defects.

                     (b) The bureau may 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, when determined to be medically necessary pursuant to§ 71-5-144.

                     (c) Coverage and benefits under subsection (b) may include early intervention
           and promoting improvements to the enrollee's quality of life and development throughout
           the life of the enrollee through:

                               (1) Appropriate modalities of therapy;
HB502
                              (2) Appropriate medications; and
                              (3) Other interventive programs, education, treatments, clothing, devices,

                    and equipment.
                    (d) The director of TennCare may apply for a federal waiver as the director
          deems necessary to effectuate this section.
          SECTION 2. This act takes effect July 1, 2025, the public welfare requiring it.

                                                                 2
         HOUSE BILL NO. 502

PASSED:  March 20. 2025

                         CAMERO~XTON,SPEAKER
                         HOUSE OF REPRESENTATIVES

                                                  RANDY NlCNALLY
                                     SPEAKER OF THEIENATE

!\pr;I APPROVED this --2i.._ day of  2025

    ~VA

BILL LEE, GOVERNOR