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Opinion: The volunteer committee advising on newborn screening must be reinstated
Cutting the federal newborn screening advisory committee either demonstrates a lack of understanding of the group’s function or represents a worrisome policy shift.
I got a blood test as a newborn that changed the course of my life forever. The test, part of newborn screening performed on babies across the U.S. led to my being diagnosed with a rare inherited disorder, phenylketonuria (PKU). I avoided intellectual disability and other symptoms such as seizures because of my early diagnosis and treatment. Every year, that simple heel prick blood test, along with a heart and hearing screening, helps identify about 14,000 babies in the U.S. born with a number of unique conditions. But recently, the federal government made an alarming decision that will risk the preventable death and suffering of children with rare conditions like mine: The Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) was terminated.
Cutting the ACHDNC, with no explanation, either demonstrates a severe lack of understanding of the function of the volunteer committee or represents a policy shift, one that deprioritizes the lives of newborns who have conditions that would be treatable with early detection. Either way, it’s a dangerous decision.
