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Committee advances bill to require coverage for genetic testing and care for SCN2A disorders
Summary
House Bill 11‑99, as amended, would require coverage for genetic testing and medically necessary treatment for SCN2A‑related disorders; grieving parents testified about delayed diagnosis and barriers to testing. The committee adopted an amendment clarifying that testing must be ordered by a provider and deemed medically necessary by the health plan, and reported the bill as amended.
House Bill 11‑99, sponsored by Representative Jordan, would require health insurance coverage for genetic testing for SCN2A‑related disorders and for medically necessary treatment of associated conditions. The committee adopted an amendment clarifying that services must be ordered by a provider and deemed medically necessary by the health plan.
Jacqueline Dedon and her husband Jacob told the committee about their daughter Emily’s diagnosis and care journey. Jacqueline described how, after emergency NICU care and transfer to Texas Children’s, genetic testing revealed an SCN2A mutation that explained severe seizures and long‑term care needs; she said access to testing was previously limited by cost and local capacity. “Access to genetic testing has dramatically improved. Costs have decreased, results are often delivered within just a few weeks now, and more insurance plans are covering advanced testing,” she told lawmakers. She also said her daughter “gained her wings on 01/02/2026” at age 8 and urged the committee to expand access for other families.
Representative Jordan said the amendment was negotiated with Blue Cross Blue Shield and stakeholders to preserve clinical discretion and workability. After adopting the amendment and hearing testimony, the committee reported HB 11‑99 as amended for further consideration.
The bill’s supporters said the change would shorten diagnostic pathways for families with rare neurological conditions and could reduce delays in receiving specialist care; opponents raised fiscal concerns but the committee chose to advance the amended measure for floor consideration.
