All babies born in Minnesota are now being screened for a treatable disease called spinal muscular atrophy (SMA), unless their parents opt out of newborn screening. SMA is the leading genetic cause of early childhood death in the United States, and the addition of this condition to the state’s Newborn Screening Program will help parents get swift treatment for children with the condition – preventing death or serious health problems.
“Adding SMA to the state’s newborn screening panel is an important move that will help save families from the heartbreak of losing a child or losing precious time where treating their child could result in better outcomes,” said Minnesota Health Commissioner Jan Malcolm. “This addition is the result of hard work by many people, including concerned parents and public health officials. We thank them for their efforts.”
SMA affects as many as 1 in every 6,000 live births each year in the United States. If untreated, children with SMA develop progressive muscle weakness, loss of motor milestones like sitting or crawling, loss of the ability to swallow and breathe, and death. Until recently, families of children diagnosed with SMA had little hope, and available treatments were merely supportive. That changed a year ago when the U.S. Food and Drug Administration (FDA) approved a drug that can effectively modify the course of the disease. Early identification of SMA through newborn screening is particularly helpful since early treatment produces better outcomes.