Advocacy - Lab Advocate
On April 21, ADLM joined 24 healthcare and patient advocacy organizations in sending a coalition letter to congressional appropriators regarding federal support for newborn screening programs in the FY 2027 Labor, Health and Human Services, and Education Appropriations Bill.
The letter requests $29 million for the CDC Newborn Screening Quality Assurance Program and $29 million for HRSA’s Heritable Disorders Program. It also requests continued support for NIH’s Hunter Kelly Newborn Screening Research Program, which supports research related to newborn screening technologies, expanded testing, and disease management.
Newborn screening serves nearly 4 million infants each year and helps detect life-threatening congenital and inherited disorders before symptoms appear. The letter highlights the role of CDC and HRSA programs in supporting state and territorial newborn screening programs through quality assurance, technical assistance, training, education, and implementation support.
The letter asks Congress to include report language directing the Department of Health and Human Services to provide an implementation plan for continuing the work previously conducted by the Advisory Committee on Heritable Disorders in Newborns and Children, including a transparent, evidence-based process for adding new conditions to the Recommended Uniform Screening Panel.
ADLM, a longtime supporter of newborn screening, will continue to work with its allies in urging appropriators to appropriately fund these programs and others important to children’s health.