Rare brain disease MLD now mandatory in newborn screenings nationwide
Published Date: 12/22/2025
Notice
Summary
Great news for newborns and families! Metachromatic Leukodystrophy (MLD), a serious but treatable condition, is now officially added to the list of recommended newborn screenings. Starting soon, health plans must cover this screening with no extra cost, helping catch MLD early and save lives.
Analyzed Economic Effects
2 provisions identified: 2 benefits, 0 costs, 0 mixed.
Employer Plans Must Cover MLD Screening
Non-grandfathered group health plans and group health insurance issuers must cover newborn screening for Metachromatic Leukodystrophy (MLD) without charging copayments, coinsurance, or deductibles for plan years beginning on or after December 16, 2026 (one year after the Secretary accepted the recommendation on December 16, 2025).
RUSP Recommends States Screen Newborns for MLD
The Secretary of HHS accepted HRSA's recommendation on December 16, 2025 to add Metachromatic Leukodystrophy (MLD) to the Recommended Uniform Screening Panel (RUSP). The RUSP recommends that every newborn be screened for conditions on the panel, but individual states decide whether and when to add MLD to their state newborn screening programs.
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