Newborn screening is one of the United States’ 10 greatest public health accomplishments of this century and greatly helps 15,000 children annually. Newborn screening began in the U.S. over 60 years ago with the PKU test.
The Newborn Screening Saves Lives Act received bipartisan support when it was passed in 2007. The legislation established the Advisory Committee on Heritable Disorders in Newborns and Children to review scientific studies and make recommendations on which conditions should be screened at birth.
I served on this committee from 2011 to 2017. During this time, the committee added Pompe Disease, mucopolysaccharidosis type 1 and X-linked adrenoleukodystrophy to the recommended uniform screening panel (RUSP). Currently, 38 out of thousands of newborn conditions are recommended for screening because a good test is available along with good treatment.
North Dakota has a Newborn Screening Advisory Committee that relies on and reviews recommendations by ACHDNC.
Department of Health and Human Services Secretary Robert F. Kennedy Jr. terminated ACHDNC without explanation on April 3, 2025. The committee’s termination came just weeks ahead of a meeting to discuss whether to add two new conditions to the RUSP: metachromatic leukodystrophy (MLD) and Duchenne muscular dystrophy (DMD). Both disorders have therapies recently approved by the Food and Drug Administration, meaning that newborn screening could allow doctors to identify the conditions and provide early treatment.
This is Kennedy’s latest terrible decision. DHHS budget and staff cuts threaten the health of our state and nation. He bungled the response to the ongoing national measles outbreak. Two children have died of measles this year in the U.S. With North Dakota’s falling childhood immunization rates, it is just a matter of time before our state experiences a measles outbreak. Kennedy was the nation’s most prominent anti-vaccine activist.
Kennedy was incompetent before his appointment and since. Trump was wrong to appointment him and Sens. Cramer and Hoven were wrong to vote for him
Kennedy should resign or be fired immediately. Cramer and Hoeven should call for either action if they are truly supportive of the health and well-being of our children.
Dr. Stephen McDonough was a pediatrician in North Dakota from 1980 to 2025 and served with the North Dakota Department of Health from 1985 to 2000. He’s also the author of ‘The Golden Ounce: A Century of Public Health in North Dakota” and “The Power of a Question,” a history of COVID in North Dakota.
