The Trump administration disbanded a newborn screening panel. Advocates now face a harder path

Patient groups face a harder and unpredictable path going state-by-state to boost screening for rare but treatable conditions after the Trump administration disbanded a federal advisory committee on newborn screening.

In April, the Advisory Committee on Heritable Disorders in Newborns and Children was shut down following an executive order signed by President Donald Trump to eliminate “unnecessary” federal functions, an HHS spokesperson said. The committee guides states on which diseases to screen for at birth.

Rare disease advocates are still pushing to salvage the committee, but for now say they have no real alternative but to shift toward a decentralized strategy.

The impact of the panel’s termination, which is starting to be felt, threatens to delay access to early detection that’s critical for patients who are eligible for new therapies from companies like Orchard Therapeutics and Mirum Pharmaceuticals.

And the effects could ripple out more broadly across the industry.

“For a drug company, if there’s no mechanism for widespread early diagnosis, that would make them think twice about investing,” said Amy Gaviglio, a genetics and public health consultant.

In May...