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Newborn screening faces uncertainty after federal advisory changes; DMD bill tabled on house calendar
Summary
Adrianne Manning, Connecticut newborn screening director at the Department of Public Health, told the Rare Disease Advisory Council that the disbanding of the federal secretary's advisory committee has left the RUSP nomination process unclear. Manning described reliance on a HRSA 'Propel' grant to add conditions (MPS II, Krabbe) and said CCMB lab
Adrianne Manning, director of newborn screening for the Connecticut Department of Public Health, told the Rare Disease Advisory Council that national changes to federal advisory structures have left the process for adding conditions to the Recommended Uniform Screening Panel (RUSP) uncertain and that state funding and federal grants will shape which disorders the state can add to its panel.
Manning said the secretary's advisory committee has been dissolved and that “it's not really clear, if it's gonna come from the secretary of health and human services” how RUSP additions will be advanced. She described multiple national groups — APHL, NASEM and professional societies — that have historically worked with the advisory committee and said those organizations remain active but that the pathway to formal RUSP additions is “up in the air.”
Manning said Connecticut currently uses a federal HRSA grant (referred to in the meeting as the Propel grant) to add conditions to its newborn screening panel. She said the state has used that grant to start screening for mucopolysaccharidosis type II (MPS II) and to prepare for Krabbe disease screening, but that Krabbe requires an especially fast testing and referral process because treatment is extremely time‑sensitive.
Manning described Krabbe screening as time critical: identified infants must be matched and transplanted within about four weeks of life for the current treatment pathway to be effective. She also said the laboratory had competing priorities, including an independently mandated CCMB item that is due to go live July 1, and that the state’s ability to add conditions depends on ongoing grant funding and state budget decisions.
On Duchenne muscular dystrophy (DMD), RDAC staff member Melia said DMD is currently included in House Bill 6919 and “has been tabled for the calendar in the house.” She explained that a bill that has been tabled on the calendar can still be folded into the budget implementer or otherwise reintroduced before the legislative session ends and that the primary hurdle remains funding and the budget process. Melia said she could not predict whether the bill would ultimately be included in a final budget.
What was not decided: No formal action was taken at this meeting to change screening policy. RDAC members heard staff and DPH reporting and requested continued updates as federal and budget decisions unfold.
Speakers on this topic included Adrianne Manning (newborn screening director, Department of Public Health) and Melia (RDAC staff), who provided the update on DMD bill status. Manning asked colleagues and advocates to track federal processes and state grant renewals and to remain prepared to support implementation if conditions are added.
Key details recorded in the meeting: the Propel (HRSA) grant has been used to add MPS II; Krabbe screening requires a rapid method and a transplant window of roughly four weeks; CCMB implementation is legislatively mandated to go live July 1; the DMD bill (HB 6919) was on the house calendar and had been tabled for now but could be included in a budget implementer or otherwise revived before the session end.
