About Half of People With SMA Have Been Denied Insurance Coverage for Treatment
Newborn screening now finds spinal muscular atrophy in a baby's first week of life, and Cure SMA's latest figures put the wait for a first treatment at 28 days.
Photo: Alexander Mass / Pexels
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.
All 50 States Now Screen Newborns for SMA
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Editor-in-Chief of Rich Woman Magazine, founder of Sovereign Magazine, author of many books, Dr Marina Nani is a social edification scientist coining a new industry, Social Edification. Passionately advocating to celebrate your human potential, she is well known for her trademark "Be Seen- Be Heard- Be You" running red carpet events and advanced courses like Blog Genius®, Book Genius®, Podcast Genius®, the cornerstones of her teaching. The constant practitioner of good news, she founded MAKE THE NEWS ( MTN) with the aim to diagnose and close the achievement gap globally. Founder of many publications, British Brands with global reach Marina believes that there is a genius ( Stardust) in each individual, regardless of past and present circumstances. "Not recognising your talent leaves society at loss. Sharing the good news makes a significant difference in your perception about yourself, your industry and your community."
