Feds Assemble Baby Blood Test Brain Trust Workgroup
Published Date: 8/12/2026
Notice
Summary
HRSA provides funding to support a national center for newborn screening systems known as the National Center for Newborn Screening Systems Excellence (NBS Excel). In fiscal year 2026, supplemental funding is being provided to NBS Excel to establish a national newborn screening stakeholder workgroup. This workgroup will be a pathway for conditions to be considered and recommended for inclusion in the Recommended Uniform Screening Panel (RUSP) and to discuss national- level issues related to newborn screening. Membership will include representatives from a wide range of newborn screening experts and stakeholders. The award recipient will convene the workgroup and develop findings, reports, and recommendations for HRSA's review and consideration. HRSA will then make recommendations to the Secretary of Health and Human Services, who has final decision-making authority on updates to the RUSP.
Analyzed Economic Effects
3 provisions identified: 2 benefits, 1 costs, 0 mixed.
New RUSP additions trigger no-cost coverage
Conditions added to the Recommended Uniform Screening Panel (RUSP) become part of HRSA-supported preventive services; as a result, non-grandfathered health plans are required to cover those screenings without patient cost-sharing beginning one year after the Secretary adopts a condition for screening.
States retain discretion to adopt RUSP items
Even if the Secretary adopts a condition for the RUSP, states and territories are not required to screen for every RUSP condition; the RUSP functions as a national framework while state adoption decisions remain voluntary. As of May 2026, the RUSP contains 40 core and 26 secondary conditions.
National newborn screening workgroup created
HRSA provided a $700,000 supplemental award in fiscal year 2026 to the Association of Public Health Laboratories to establish a national newborn screening stakeholder workgroup (NBS Excel). The workgroup will be a formal pathway for conditions to be considered and recommended for inclusion in the Recommended Uniform Screening Panel (RUSP), will meet at least three times a year, and will be open to the public.
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