Posted 7/25/2019 by Vamsee Pamula, PhD, co-founder and President
Every baby deserves a healthy start, and the Senate and House of Representatives are currently considering bills that will continue to ensure just that for all of the 4 million babies born each year in the United States.
The Newborn Screening Saves Lives Reauthorization Act of 2019 (H.R.2507) seeks to continue and expand support for one of our country’s most successful public health programs. Since the original Newborn Screening Saves Lives Act (P.L. 110-204) was enacted in 2008, reauthorization has been required every five years in order to reevaluate the program. (The 2014 reauthorization expires September 30, 2019.)
This bipartisan bill reauthorizes federal programs to support:
- improvement and expansion of state newborn screening programs
- parent and provider education
- laboratory quality and effective surveillance
These federal programs include:
- Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC), which evaluates conditions for addition to the Recommended Uniform Screening Panel (RUSP)
- Centers for Disease Control and Prevention (CDC) Newborn Screening Quality Assurance Program
- National Institutes of Health (NIH) Hunter Kelly Newborn Screening Research Program
As noted in Dr. Rodney Howell’s recent editorial on STAT, the Newborn Screening Saves Lives Act has “resulted in greater uniformity, collaboration, and effectiveness of these programs. Federal activities ensure that each state has access to the information, expertise, and guidance to give all babies the same opportunity to be screened and treated.”
Sponsors of the House bill took into account recommendations from newborn screening advocates as amendments to the 2014 reauthorization act. Key updates in the 2019 reauthorization act proposed by the House (which will apply over five years 2020-2024) include:
- Increased funding from $20 million/year to over $60 million/year including significant funding increase for states’ newborn screening programs
- Funding for a study to be conducted by the National Academy of Medicine to evaluate, report, and provide recommendations to modernize processes including the RUSP process and state barriers to RUSP implementation
Examples of the potential impact of these amendments include 1) faster adoption of RUSP-approved tests to state programs and 2) funding to bridge screening from state pilot studies to live full population screening.
The deadly disease SCID was added to the RUSP in 2010. It took about 8 years to implement screening for SCID in all states. Newborn screening tests for more recent additions to the RUSP – SMA, X-ALD, Pompe, and MPS I – have only been implemented in some states. If you consider the incidence rates of these four disorders and the annual birth rates in states that are not yet screening for these conditions, approximately 1,000 babies are born each year with one of these conditions – without receiving life-saving screening at birth.
Availability of funding is one of the major barriers for the implementation of conditions, even for RUSP-approved disorders which have available treatment options and have already been rigorously evaluated for public health benefit. Time is of the essence and precious babies’ lives depend on public health newborn screening programs securing funding.
Time is of the essence and precious babies’ lives depend on public health newborn screening programs securing funding.
Great news just in! Late last night the full House of Representatives voted to approve bill H.R.2507, the Newborn Screening Saves Lives Reauthorization Act of 2019. There are 42 cosponsors on the House bill from 25 different states and the District of Columbia.
Now, on to the Senate! Last week Senators Cory Gardner (R-CO) and Maggie Hassan (D-NH) introduced a companion bill (S.2158). While introduction in the Senate is a crucial milestone, the language in the Senate bill is more of a clear reauthorization, not inclusive of increased funding level in the House bill. Newborn screening advocates should encourage their Senators to support the House bill’s funding levels.
What Can You Do?
Support this critical legislation in these ways:
- Ask your Senator to cosponsor the bill. More cosponsors increases the likelihood of passing. The EveryLife Foundation for Rare Diseases has made it easy:
- Post on social media. There are many newborn screening advocacy groups actively supporting this legislation including EveryLife, March of Dimes, APHL, Expecting Health, Hunter’s Hope, and NORD to name a few. Get started by sharing this post on LinkedIn:
- Request a meeting with your representative. Rare Disease Legislative Advocates (RDLA) staff help prepare advocates for meetings with legislators. Tune in to RDLA’s webinar on July 25 for more.
At Baebies, we support the Newborn Screening Saves Lives Reauthorization Act as it directly aligns with our mission to save lives and make lives better for all children by bringing new technologies, new tests and new hope to parents and healthcare professionals worldwide.
Help spread the word!