On January 31, Virginia House Bill 1782 passed unanimously in the House of Delegates with 96 votes and has now moved to the Senate for further consideration. The bill ensures the state considers screening newborns for certain conditions that are devastating, yet treatable when acted upon. The legislation also creates a streamlined process for the state health officials to review these new conditions, ensuring that babies do not go undiagnosed due to unnecessary administrative delays.
Many states, including Virginia, screen newborns for most of the conditions on the federal Recommended Uniform Screening Panel (RUSP), which is a list of conditions that is periodically updated by a committee of newborn screening experts using a thorough, science and evidence-based review process. HB 1782 will codify an automatic and streamlined process for the state to evaluate, at a minimum, all new RUSP conditions, taking advantage of established medical standards and decreasing burdens for patient advocates. This process ensures the state program will continue to leverage the expertise of the federal review process, granting them opportunities to focus on other areas of newborn screening. Conditions that are not on the RUSP can still be added to the state screening panel based on state-specific needs and recommendations.
“Recently, Virginia has added two RUSP conditions, SMA and X-ALD, to its newborn screening panel. This progress is the direct result of the powerful rare disease voices in the state. Nonetheless, there’s still more work to do,” says Annie Kennedy, Chief of Policy Advocacy and Patient Engagement at the EveryLife Foundation for Rare Diseases. “With this legislation, Virginia is setting a precedent for comprehensive newborn screening, which is crucial for timely diagnosis and treatment. This bill represents hope for families impacted by rare diseases, offering them the support and resources they need from the very beginning.”
The Virginia Senate must pass HB 1782 before the session adjourns on February 22, 2025. If the bill is passed and enacted, the state will initiate an evaluation of any RUSP condition that is not on the state’s newborn screening panel. Public input will be sought during the evaluation process to ensure transparency and community involvement.
We extend our heartfelt thanks to Delegate Sullivan for sponsoring this crucial bill and for his unwavering commitment to improving the health and well-being of Virginia’s newborns. We also appreciate the more than 40 patient organizations and the dozens of Virginia residents who have supported this important legislation.
To learn more about the legislation and newborn screening, visit RareScreening.org.
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About EveryLife Foundation
EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments, and cures. The Foundation provides training, education, resources, and opportunities to make patient voices heard, help change public policy and save lives.
Contact:
Will Nolan
Chief Marketing Communications Officer, EveryLife Foundation for Rare Diseases
wnolan@rareadvocates.org
Emily Stauffer
Associate Director of State Policy, EveryLife Foundation for Rare Diseases
estauffer@rareadvocates.org
