NBSAA OVERVIEW

The Newborn Screening Action Alliance (NBSAA) is a results-oriented, focused effort led by experienced, motivated, connected, and demonstrated leaders to improve the efficiency, consistency, and capabilities of newborn screening at the federal and state levels. NBSAA leadership is building an informed action-oriented alliance of key stakeholders across the NBS ecosystem focused on advancing and resolving identified issues as we move to modernize, realign, and fund the US NBS system by passing legislation with appropriations.

PROBLEM STATEMENT

Since 2019, there have been ongoing federal legislative discussions with limited action or results, federal Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) unpredictability and scope creep, increasing redundancies at both the federal and state levels, limited patient voice and interactions in discussions and decisions, shrinking consensus, and growing independent voices inside the NBS ecosystem.

Measurable federal legislative progress and fiscal appropriations have been stalled for over six years, with still unresolved privacy and appropriations issues in the Senate as the primary legislative roadblocks. The federal changes in early 2025, the increasing use of genomic sequencing with actionable (and non-actionable) results as a screening and diagnostic tool, increasing and demonstrated legal/privacy concerns, and a tsunami of new and current demands on NBS are simply magnifying the weaknesses, vulnerabilities, variabilities, and opportunities that exist in today’s newborn screening ecosystem.

The National Academies of Sciences, Engineering, and Medicine (NASEM) report, and the many current straw man proposals demonstrate the community’s creativity, but we must coalesce these ideas, focus, take action, and achieve closure.

NBSAA Focus and Goals

NBSAA is both focused and capable of re-aligning the community in a healthy, collaborative, and inclusive way while resolving the legislative roadblocks.  NBS is a complicated blend of dozens of ecosystem partners, federal and state policy, and appropriations. We will balance and focus efforts to optimize both short- and long-term outcomes,.and achieve our goals by enabling an action/results-oriented community that collaborates productively, adopting a fresh approach and vision, modernizing how we contribute and interact, ultimately rising above the attribution of individual/organizational credit as we collectively make more progress together than we can alone by focusing on converting discussion, ideas, and passion into action and results.

• NBS Action Alliance — bring together to identify and coalesce the best ideas from the sometimes competing or conflicted patient advocacy groups, clinicians, state and federal government, state NBS lab and public health directors, industry partners, and parent advocates. Identify optimal practical, implementable, efficient, and collaborative practices … and then move these collaborative ideas to closure through “leather-on-the-marble” and “booties-in-the-labs” action.
• State Policy & Legislative Work — provide draft/model bill language and in-person support to guide and lead State, Territorial, Native American, and Indigenous Peoples’ legislative efforts by informing and empowering lawmakers and advisory committees, and supporting state labs.  This includes support for dependable funding and appropriations, building in-person relationships with key decision-makers in each state, and providing hands-on support using creative, empowering, and effective tools with in-state alliances of NBS advocates and resources.  RUSP credibility and alignment will be a key effort in non-aligned states.
• Federal Advocacy & Technical Engagement — seize this unique moment in time to actively engage, guide, and improve the efficiency, focus, accountability, and impact on local NBS by the ACHDNC, RUSP, and other federal resources, including HRSA, NIH, FDA, CDC, DOW, ARPA-H, and other federal resources and contractors through approved legislation, appropriations, accountability, engagement, ongoing collaboration, proposals, reauthorization bills, and streamlined federal-to-state implementation support.
• Not just good discussion and ideas … we want that turned into practical, efficient, and supported action with implemented solutions and results – not just incremental “at least it’s something” results, rather millions of lives depend on what we do – we are focused on transformative results!

Key projects include:

• • Resolving and passing an improved and focused NBSSL Act through both houses of the 119th Congress, including a negotiated and sufficient Senatorial resolution and/or compromise on the issues of privacy and blood spot retention, and supporting appropriations. Passage will enable and empower an improved, more focused, more efficient, and more representative ACHDNC with increased support for state NBS new-condition implementation, efficiency, reporting, and follow-up, including fiscal support.
  • Establish a cross-ecosystem framework addressing the boundaries between screening, diagnostic confirmation, and referrals to disease expertise and therapies. 
  • Enhance the efficiency and consolidate reporting capabilities of population screening and pilot studies, as well as long-term intra- and inter-state follow-up.
  • Focus federal roles in NBS guidance and improve the efficiency of new disorder screen review, approval, and implementation. Include in the framework a mechanism to establish an appropriate and evolving use of sequencing and genotype-phenotype correlation, as well as leveraging next-generation technologies that may emerge, such as AI.
  • Empower discussions to address Common Rule, privacy, and use issues affecting NBS activities, such as dried blood spot and genomic data access and retention, while protecting personal privacy and preventing the misuse of screening data and blood spots outside their intended NBS purposes. Discussions will also include process quality control and the development of new assays.
  • Develop an effective, efficient, scalable, and focused platform for identifying, empowering, engaging, partnering, and tracking local advocacy, families, constituents, and resources to update and pass policy favorable to NBS.
  • Similar action-oriented goals will emerge and be refined as collaborative discussions of Alliance Members evolve.

LEADERSHIP

Seasoned, results-oriented leaders: Dean Suhr is a rare disease father and 25-year advocacy leader with over 18 years of active policy leadership and 17 years of NBS engagement. Jeffrey Anders is a proven, hands-on Capitol Hill activist with a 30+ year history of legislative and appropriations accomplishments, including key connections with Congressional Committees and the Senate, as well as extensive experience in rare disease policy and advocacy. Tara J. Britt is a 16-year veteran of state rare disease efforts and has been instrumental in creating and advising Rare Disease Advisory Councils, while also ensuring that those councils’ primary focus is newborn screening, including RUSP alignment. She has led efforts across states by working hands-on with State Public Health directors, patients, patient advocates, and legislators using effective model legislation.

Jeff, Tara, and Dean are focused and qualified with the skills, experience, perspective, and motivation to get things done without credit and egos getting in the way – seizing this pivotal opportunity to improve, modernize, and position NBS for the future, with immediate legislative and appropriations results.

INVITATION

You are invited to join the results-oriented Newborn Screening Action Alliance (NBSAA) as an Alliance member at large. We are also establishing an Advisory Board. We are seeking partners to contribute, collaborate, and support our refinement and advancement of innovative ideas into reality.