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Committee backs bill to add spinal muscular atrophy to Arkansas newborn screening
Summary
The committee passed HB1074 to require newborn screening for spinal muscular atrophy (SMA), a genetic disease with an effective treatment when given presymptomatically; sponsor said the test costs $9.10 per child and family witnesses described diagnostic delays and benefits of early treatment.
The Public Health, Welfare and Labor Committee approved House Bill 1074 to add spinal muscular atrophy (SMA) to Arkansas’s newborn screening panel. Senator Hester, presenting the bill, described SMA as a genetic disorder for which an FDA‑approved treatment became available in February 2016; when detected before symptoms, the treatment can prevent progression and allow children to develop more typical function.
Senator Hester told the committee the per‑child screening cost is $9.10 and that she has worked with Medicaid, the Department of Health and insurers on feasibility. Parents and grandparents of affected children gave emotional testimony: Sylvia Wheeler described the months‑long diagnostic process for her granddaughter, and Deanna Dillon recounted waiting six months for a diagnosis for her daughter and the high long‑term costs of care (examples cited in testimony included a $45,000 and an $87,000 electric wheelchair). Dillon urged passage to enable earlier treatment and reduce long‑term costs to families and public programs.
Committee members moved and passed HB1074 by voice vote. Sponsors and committee staff said they had worked with health agencies on the policy, and proponents urged rapid enactment to ensure newborns have timely access to approved therapies.
