Senate bill would add Duchenne muscular dystrophy to Texas newborn screening, sponsors and families say
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Sen. Parker and medical witnesses urged adding Duchenne to the Texas newborn screening panel to shorten diagnosis time and speed access to therapies; sponsor said the fiscal estimate is under review and implementation timing could be phased.
Senator Sarah Parker, sponsor of Senate Bill 1044, told the committee the bill would add Duchenne muscular dystrophy (DMD) to Texas’s newborn screening panel to speed diagnosis and earlier access to therapies.
Parker said DMD is a universally progressive genetic disease that commonly is diagnosed at about age 5 — roughly two and a half years after caregivers first notice symptoms — and that earlier diagnosis through newborn screening would permit earlier multidisciplinary care, genetic counseling and access to disease‑modifying therapies now available and under development. She said a recently FDA‑authorized laboratory test can detect Duchenne using the same newborn blood spots already collected.
Dr. Ashley Stanley Copeland, a pediatric neurologist, and Rosalia Sandoval, a mother of a child with Duchenne, testified in favor. Dr. Stanley Copeland said early diagnosis improves access to therapies and clinical trials and avoids unnecessary invasive testing; Rosalia Sandoval described the emotional and financial toll of a five‑year diagnostic timeline for her son.
The sponsor acknowledged a fiscal note the committee received and said staff were working to reduce the estimated costs and consider phased implementation; public testimony closed and the bill was left pending.
