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.
Your PRIA Score
Personalized for You
How does this regulation affect your finances?
Sign up for a PRIA Policy Scan to see your personalized alignment score for this federal register document and every other regulation we track. We analyze your financial profile against policy provisions to show you exactly what matters to your wallet.
Key Dates
Department and Agencies
Take It Personal
Get Your Personalized Policy View
Start a Free Government Policy Watch to see how policy affects your household, then upgrade to PRIA Full Coverage for year-round monitoring.
Already have an account? Sign in