Committee backs bill to add Duchenne muscular dystrophy to Arizona newborn screening panel

Senate Bill 1076, which would require the Department of Health Services to add Duchenne muscular dystrophy (DMD) to Arizona’s newborn screening panel once DMD is added to the federal recommended uniform screening panel, received a due-pass recommendation from the House Health and Human Services Committee.

The bill, as drafted, directs DHS to notify legislative counsel within 10 days after DMD is added to the recommended uniform screening panel and sets the bill effective on the earlier of Oct. 1, 2027, or two years after DMD is added to the recommended panel.

Advocates and family testimony: Dr. Brett Farrell, an emergency medicine physician and father of two sons with Duchenne, described the family’s experience: his older son was diagnosed at age 4 after about two years and roughly 15 specialist visits, while his younger son was diagnosed at birth due to newborn screening elsewhere. “If we'd been tested at birth, the results would have saved us those two years worth of searching and stress,” Farrell said, and added that earlier diagnosis allowed families to begin recommended therapies and plan for equipment and specialist access.

Fiscal and implementation notes: Rick Hazelton, with Public Policy Partners speaking on behalf of Sarepta Therapeutics, said the Department of Health estimated an up-front validation study cost of about $204,000 for the state laboratory. Hazelton also reviewed prevalence figures and said Arizona sees an estimated four to six boys born with Duchenne annually and cited a working prevalence estimate of about 249 current cases in the state based on standard incidence calculations. Damien Carpenter of Access (the Medicaid agency) said the agency is neutral and provided a fiscal estimate tied to an assumed Oct. 1, 2027, implementation: Access estimated general fund costs of about $88,000 and total fund costs of roughly $285,000 in the first year, noting the program fee that funds newborn screening may increase by about $10 per birth as a rough estimate.

Committee action: After testimony and questions about fiscal impacts and testing logistics, the committee voted to return SB 1076 with a due-pass recommendation by voice roll call. The committee recorded 12 ayes, 0 nays.

Details and next steps: Witnesses emphasized that newborn screening for DMD would shorten the diagnostic journey for many families and enable earlier initiation of recommended care and planning. The department will need to validate the test in the state lab prior to routine screening; the validation cost and program-fee impacts were discussed as part of budget negotiations.