The SMA community is buzzing with the news that spinal muscular atrophy has been nominated to be included on the RUSP. RUSP stands for Recommended Uniform Screening Panel and is a list of diseases and conditions that babies are screened for at birth in the U.S. The list currently includes 34 core conditions and 26 secondary conditions.
According to babyfirsttest.org, a condition is considered a “core condition” if there is a reliable test to detect it, the prognosis of the disease is fully understood, there is an available treatment, and the disease may affect the family’s reproductive decisions in the future. “Secondary conditions” are genetic conditions that can be identified when screening for a core condition.
The list of diseases varies from state to state, as it depends on the individual state’s ability to screen for a particular disease between 24 and 48 hours after birth. The state also needs to be able to provide an effective treatment.
SMA has not been included on the RUSP because there was no effective treatment for the disease. However, with the FDA’s approval of Spinraza, that could all change. Cure SMA and the Muscular Dystrophy Association have been lobbying for the inclusion of SMA on the RUSP and the nomination is currently being reviewed. It’s hoped that an announcement will be made soon and that babies will be routinely screened for SMA beginning in 2018. This would mean babies with the condition could start Spinraza treatment much earlier.
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