4 days Ago
Health and Human Services Secretary Robert F. Kennedy Jr. has pledged in office to make Americans healthier, with a specific focus on reducing health burdens among children.
But his department this month quietly eliminated an advisory committee on genetic disorders in newborns and kids. For the last 15 years, the central role of the Advisory Committee on Heritable Disorders in Newborns and Children was to make recommendations to the health and human services secretary about which conditions to include on a universal screening panel for newborns. Though Kennedy has been focused on identifying the origins of more pervasive childhood diseases like autism, asthma and obesity, rare diseases are collectively a large public health concern.
Around 15 million children in the United States have rare diseases, most of which are genetic. Newborn screenings identify around 14,000 babies every year who have potentially life-threatening or life-altering conditions, according to the National Organization for Rare Disorders (NORD). Getting a diagnosis around the time of a child's birth gives parents a valuable window to seek treatment, which is usually most effective before symptoms set in.
It's up to states to decide which conditions to test for, but most follow the federal government's Recommended Uniform Screening Panel, which suggests looking for 38 conditions, including cystic fibrosis and Pompe disease, a disorder that causes muscle weakness. The screening panel is largely shaped by recommendations from the advisory committee's volunteer scientists and medical experts. The committee has "gone a long way in helping to ensure that newborns across the country, regardless of where they're born, are screened for these certain conditions," said Allison Herrity, a senior policy analyst at NORD.
According to an internal HHS email reviewed by NBC News, the committee was terminated, without explanation, on April 3. It had been scheduled to meet next month to discuss adding two..
. Aria Bendix.
