Orchard Therapeutics supports enactment of Newborn Metabolic Screening Act

Orchard Therapeutics expresses its strong appreciation for the passage of the Newborn Metabolic Screening Act in Illinois, also known as SB67. The law, anticipated to go into effect in January 2024, mandates the expansion of the Illinois Department of Public Health’s Newborn Screening program to include metachromatic leukodystrophy for the estimated 130,000 newborns in the state each year. Illinois becomes the first state in the U.S. to add newborn screening for MLD to its statewide panel. In the most severe form of MLD, babies develop normally but in late infancy start to rapidly lose the ability to walk, talk and interact with the world around them. These children may require 24-hour care, and the majority pass away within five years of disease onset, creating an enormous burden on patients, their families and health care systems. There are currently no approved treatment options in the U.S. for MLD beyond supportive care. “The enactment of SB67 represents the culmination of a multi-stakeholder initiative working together to expand screening for MLD and represents a significant milestone for newborn screening in the U.S.,” said Leslie Meltzer, Ph.D., chief medical officer of Orchard Therapeutics. “As with many rare, life-threatening diseases, early detection and diagnosis is key to ensuring the best possible outcomes for patients. This significant milestone by Illinois will ensure the state keeps up the pace of diagnoses to coincide with biomedical innovation. We are highly encouraged by this progress and look forward to continuing to work with families, physicians and the broader community to actively lay the groundwork for the implementation of universal MLD screening in other states.”