About Half of People With SMA Have Been Denied Insurance Coverage for Treatment

A baby born with spinal muscular atrophy in the United States is now typically diagnosed within a week of birth and starts treatment within a month, before any muscle weakness appears. A decade ago that diagnosis usually took more than a year, and treatment took months longer still. Cure SMA's 2025 State of SMA report, published in May, also found that about half of children and adults with SMA have been denied insurance coverage for their treatment at some point, and that 49% of those who use durable medical equipment such as a wheelchair have been denied coverage for that.

SMA is caused by a missing or faulty copy of a gene called SMN1, which the nerves in the spinal cord need to keep signaling muscles. Most people carry two working copies, one from each parent, and someone with a single working copy is healthy, so parents can pass on a faulty copy without knowing they carry one.

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