Senate committee gives due-pass recommendation to bill adding Duchenne muscular dystrophy to newborn screening

Senate Bill 1076, which would expand Arizona's newborn-screening program to include Duchenne muscular dystrophy (DMD), received a due-pass recommendation from the Arizona State Senate Health and Human Services Committee by a vote of 6 ayes, 0 noes and 1 not voting.

The bill, as presented to the committee, requires the Arizona Department of Health Services to add DMD to the state's newborn screening panel effective on the earlier of Oct. 1, 2027, or two years after DMD is added to the federal Recommended Uniform Screening Panel (RUSP). The bill also requires the DHS director to notify legislative counsel in writing within 10 days after DMD is added to the RUSP.

Allison (committee staff) summarized the measure and the proposed implementation timeline. Jill Castle, a Phoenix-area parent and representative of Parent Project Muscular Dystrophy and the Little Hercules Foundation, testified in support and described her son's diagnostic delay and subsequent clinical-trial participation. Castle said early diagnosis enabled interventions that have preserved her son's heart and lung function into adulthood and urged the committee to add DMD to newborn screening so other families avoid prolonged diagnostic journeys.

Jennifer Green, a licensed practical nurse and parent from Tucson, also testified in support and described delayed recognition of developmental signs that led to a later Duchenne diagnosis for her son. Both speakers said earlier detection leads to earlier access to therapies and care.

Damian Carpenter of Access provided a fiscal estimate and said that assuming an Oct. 1, 2027, implementation, Access estimates a state general fund cost of about $88,000 in SFY 2028 and a total fund cost of about $285,000 using the methodology applied in prior years.

The committee had no amendments to the bill. Vice Chair (Senator) TJ Schulp moved the bill with a due-pass recommendation. The roll call recorded several senators answering "aye" during the voice vote; senators recorded on the transcript as saying "aye" included Senator Leila Austin, Senator Hilda Angus, Senator Flavio Bravo and Chair Karen Warner. The secretary announced the result as 6 ayes, 0 noes, 1 not voting.

Why this matters: Supporters said early biochemical and genetic screening for DMD can shorten families' diagnostic journeys, allow earlier clinical management and access to emerging therapies, and lower longer-term costs from delayed diagnosis. The bill ties the statutory requirement to the federal RUSP process and an explicit fallback date.

Next steps: With a due-pass recommendation, the bill moves from committee for further consideration by the full Senate.