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Board to refine resolution urging state to add MLD and DMD to newborn screening panel
Summary
Board members reviewed a draft resolution supporting addition of Metachromatic Leukodystrophy and Duchenne Muscular Dystrophy to North Carolinas newborn screening panel, asked staff to address the Division of Child and Family Wellbeing, and agreed to revise language for the March meeting.
The Orange County Board of Health reviewed a draft resolution Feb. 25 urging North Carolina policymakers to add Metachromatic Leukodystrophy (MLD) and Duchenne Muscular Dystrophy (DMD) to the state newborn screening panel and asked staff and board members to revise the language before taking it up for action in March.
Jean Phillips-Weiner, the boards strategic plan manager, said the draft was prepared after Vrinda of Youth for Rare Diseases presented at the January meeting. Phillips-Weiner noted both conditions are inherited, have effective screening tests and gene therapies, and that delays in diagnosis can cause irreversible loss of function. She told the board the federal Recommended Uniform Screening Panel (RUSP) added MLD and DMD at the end of 2025, but North Carolina adoption may lag: "In the past, the condition Pompe was added to the NC Newborn Screening Panel fifteen years after it was added to the RUSP," the presentation noted.
Board members discussed who the resolution should address. Dr. Rachel Royce suggested narrowing the addressee to a division rather than an individual secretary. The board agreed to address the Department of Health and Human Services' Division of Child and Family Wellbeing and to circulate a revised draft to the board and the county commissioners so county-level action can be coordinated.
No final vote was taken; board members will review and revise the draft before the March meeting when the resolution will be presented for further consideration.
