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Local nonprofit asks Board of Health to back adding MLD and DMD to state newborn screening
Summary
A founder of Youth for Rare Diseases told the Orange County Board of Health that North Carolina should add Metachromatic Leukodystrophy and Duchenne Muscular Dystrophy to its newborn screening panel; the board agreed to help draft a resolution and asked the presenter to assist.
Vrinda, founder of Youth for Rare Diseases, told the Orange County Board of Health on Jan. 21 that North Carolina should add Metachromatic Leukodystrophy (MLD) and Duchenne Muscular Dystrophy (DMD) to the state's newborn screening panel.
"The sooner NC adopts MLD and DMD as a part of their newborn screening panel, the better outcomes will be for babies born with MLD and DMD," Vrinda said, noting that the federal Recommended Universal Screening Panel added both conditions in late 2025. Vrinda urged local officials to press state leaders to implement the change promptly.
Vrinda told the board that validated screening tests and FDA-approved therapies exist for both conditions, but that delays between a federal recommendation and state implementation are common. She cited an eight-year delay for Pompe disease in North Carolina as an example of previous slow adoption.
Board members asked technical and cost questions. Vrinda estimated a lab fee of about $5 per newborn for the screening tests. "By law, all tests on the newborn screening panel are covered by all insurance companies," Dr. Aparna Jonnal said, and Medical Director Erica Pettigrew added that the panel is standardized by state government and cannot be selectively applied by providers.
Dr. Rachel Royce requested prevalence context; Vrinda said DMD occurs in roughly 1 in 5,000 to 1 in 9,000 births and MLD in about 1 in 40,000 to 1 in 160,000 births. Board members discussed both the clinical benefits of earlier identification and the potential long-term cost savings to families and insurers.
Dr. Jonnal asked Vrinda to help draft a resolution for the board to consider; Vrinda agreed. Because a quorum was not present, the board did not vote on a formal endorsement at this meeting. The board indicated informal support and will consider a formal resolution once it is drafted and placed on a future agenda.
