On May 2, 2019, the Newborn Screening Saves Lives Reauthorization Act of 2019 (HR 2507) was introduced in Congress. This bill reauthorizes critical federal programs that provide assistance to states to improve and expand their newborn screening programs; support parent and provider education; and ensure laboratory quality and surveillance for newborn screening.
The original act, passed in 2008, was critical to providing the resources and support needed to achieve the goal of screening infants for Severe Combined Immunodeficiency (SCID) in all 50 states. With the help of advocacy from the Immune Deficiency Foundation (IDF) and other organizations, and supported by renewed federal funding in 2014, as of December 2018, all states screen newborns for SCID. Continued support to states through this act will ensure screening continues and that any existing barriers are addressed.
The act increases funding for Health Resources and Services Administration (HRSA) and Centers for Disease Control and Prevention (CDC) grants to expand state screening programs, educate parents and healthcare providers, and improve follow-up care for infants with a condition detected through newborn screening. This includes funding to support SCID Compass, an educational program of IDF that seeks to improve outcomes for infants with SCID by enhancing access to educational resources, providing linkages to critical services and developing mechanisms for follow-up.
With SCID as the first condition to be added onto the initial federal Recommended Uniform Screening Panel (RUSP) in 2010, the PI community was a pioneer in advocating for screening to ensure infants born with serious conditions are identified and treated quickly. The federal funds provided to states through the Newborn Screening Saves Lives Act ensured that all states are now screening for SCID, and support for its reauthorization in 2019 will ensure screening continues and any existing barriers are addressed. Families with children born with SCID will continue to benefit from the reauthorization through programs focused on long-term surveillance of individuals identified at birth to assess patient progress and outcomes to inform future treatments. In addition, with over 350 types of PI, there may be opportunities in the future to identify and treat other conditions early through newborn screening to ensure children with PI are able to thrive. This act supports research and pilot studies that will help the PI community realize that possibility.
On June 20, 2019, we will be advocating in support of the passage of the Newborn Screening Saves Lives Reauthorization Act of 2019 (HR 2507) during our annual IDF Advocacy Day on Capitol Hill. If you are not participating in IDF Advocacy Day, you can help support this effort by signing up for IDF Action Alerts at www.primaryimmune.org/action-alerts. You will be notified when you’re needed to make your voice heard to legislators about this important legislation. You simply enter your individual information to customize the provided message and hit send, and you have helped influence change!
This article originally appeared in the IDF monthly e-newsletter, Primary Immune Tribune. Click here to subscribe.