Board staff say MLD petitioner will resubmit; Board may convene newborn screening TAC

Molly Dinardo, Board staff, told the Health Promotion Committee on Feb. 5 that a petitioner will resubmit a request to add Metachromatic Leukodystrophy (MLD) to the state's newborn screening review now that the condition has been added to the federal Recommended Uniform Screening Panel (RUSP).

Dinardo said staff expect the Board may need to convene a Newborn Screening (NBS) Technical Advisory Committee (TAC) to conduct a comprehensive review of MLD. She said the Board could decide at its March 12 meeting or at the April 8 meeting whether to convene the TAC and outlined that process refinements clarifying the Board’s role at each stage of newborn screening review are underway and may be presented in March.

Member Steve Kutz emphasized the importance of maintaining consistency in TAC membership and raised ethical and cost considerations related to screening decisions, including false positives. Dinardo also noted that the next NBS TAC is scheduled for March 17 to review Hunter syndrome (MPS II); recommendations from that TAC will be available for the Board’s April meeting.

Why it matters: Adding a condition to the state review or to newborn screening panels can affect which conditions are screened at birth and can trigger resource, counseling, and follow-up requirements for families and health providers.

What’s next: Staff will present proposed process refinements and any recommendation about convening a TAC to the full Board at the March or April meeting. The committee did not vote on convening a TAC during the special meeting.