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H736: Timely Updates to Newborn Screening Program. Latest Version



AN ACT requiring that new conditions listed on the recommended uniform screening panel (rusp) be added to north carolina's newborn screening program within tHREE years after being added to the rusp AND to REQUIRe THE DEPARTMENT OF HEALTH AND HUMAN SERVICES TO PROVIDE REPORTS ON ADDING RUSP CONDITIONS TO THE NEWBORN SCREENING PROGRAM.

The General Assembly of North Carolina enacts:

SECTION 1.  G.S. 130A‑125(b) reads as rewritten:

(b)      The Commission shall adopt rules necessary to implement the Newborn Screening Program. The rules shall include, but shall not be limited to, the conditions for which screening is required. The Commission shall amend the rules as necessary to ensure that each condition listed on the Recommended Uniform Screening Panel developed by the Secretary of the United States Department of Health and Human Services and the Advisory Committee on Heritable Disorders of Newborns and Children (the RUSP) is included in the Newborn Screening Program, Program within three years after being added to the RUSP, except that the Commission is exempt from rule making with respect to adding screening tests for Pompe disease, Mucopolysaccharidosis Type I (MPS I), and X‑Linked Adrenoleukodystrophy (X‑ALD). The Department of Health and Human Services shall provide a report to the Joint Legislative Oversight Committee on Health and Human Services 18 months after a condition is added to the RUSP. When a delay adding an RUSP‑identified condition to the Newborn Screening Program exceeds three years, the Department shall provide a report on the status and reasons for the delay to the Joint Legislative Oversight Committee on Health and Human Services every six months following the three‑year delay. Screening is not required when the parents or the guardian of the infant object to such screening. If the parents or guardian object to the screening, the objection shall be presented in writing to the physician or other person responsible for administering the test, who shall place the written objection in the infant's medical record.

SECTION 2.  This act becomes effective January 1, 2022.