NC S466

Department of Health and Human Services shall seek federal approval to cover comprehensive genomic testing, including rapid whole genome sequencing, for Medicaid beneficiaries age 21 or younger with acute or complex illnesses of unknown cause.

Eligible beneficiaries must be receiving inpatient hospital services in an intensive care unit or high acuity pediatric care unit, with illness not confirmed to result from environmental exposure, toxic ingestion, normal-response infection, or trauma.

Rapid whole genome sequencing must return preliminary results within 5 days and final results within 14 days, and coverage includes testing of the beneficiary alone or with biological parents regardless of parental Medicaid eligibility.

Genetic data from testing shall be used primarily for diagnosis and treatment, subject to HIPAA protections, with results available upon request to the beneficiary, biological parents, or legal guardian; scientific research use requires express consent.

Appropriates $500,000 in state funds for fiscal years 2023-2024 and 2024-2025 to leverage $967,000 in federal matching funds annually, with coverage beginning no sooner than July 1, 2023.