On the morning of Thursday, June 25, before the IDF 2015 National Conference officially began, energized members of the primary immunodeficiency (PI) community joined forces for a Rally for Newborn Screening for Severe Combined Immune Deficiency (SCID) in Louisiana, raising their voices to ensure that Louisiana babies are not unnecessarily at risk of dying from a curable disease.
Louisiana was the 5th state to begin screening for SCID in 2010 through a pilot program; however, just over 30,000 babies were screened before the state decided to end the pilot in April, 2011. Since then, little has been done to reinstate a process that saves lives and reduces healthcare costs. The rally created a unified voice for the PI community to let Louisiana state officials know that all babies deserve a chance at a healthy life and SCID screening needs to immediately come back to the state.
For more information about how you can help urge Louisiana state officials to include SCID screening in the state’s newborn screening panel, contact IDF’s public policy team at idfscidinitiative@primaryimmune.org.