--- title: About Half of People With SMA Have Been Denied Insurance Coverage for Treatment description: Newborn screening finds SMA in a baby's first week and treatment starts within a month, yet Cure SMA's 2025 report finds about half have faced a denial. author: Dr Marina Nani (Editor-in-Chief) updated: 2026-08-09T03:13:49.406Z canonical: https://richhealthmagazine.com/article/sma-newborn-screening-insurance-denials image: https://cdn.nanimediahouse.com/sma-newborn-screening-blood-spot-119371.webp categories: Longevity & Science content_type: News region: United States publication: Rich Health Magazine schema_type: Article --- 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 the treatment months longer again. 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 The federal government added SMA to the Recommended Uniform Screening Panel, the list of conditions states are advised to test newborns for, in July 2018. Cure SMA says every state was screening for it by 2024, using a few drops of blood taken from a baby's heel. A child found this way is usually identified before any sign of the disease, at a stage doctors call pre-symptomatic, which is what allows treatment to start so early. The median age at diagnosis fell from 1.2 years in 2017 to 7 days in 2025, and the average wait between diagnosis and a first treatment fell from 196 days to 28 over the same period. Cure SMA says about 77% of people with SMA in the US were using one of the four approved treatments, Evrysdi, Spinraza, Zolgensma and Itvisma, as of the last quarter of 2025. > "One of the most encouraging signals in this year's data is how much earlier we're catching SMA and starting treatment, but the numbers also show us where the science still needs to catch up with the community's daily reality." > — Lisa Belter, Vice President, Data Analytics, Cure SMA About 5% of children with SMA carry a point mutation in SMN1 that the standard newborn test does not pick up, so a small number are still found only once symptoms start. That is most often Type 1, historically the most common and most serious form, where symptoms can appear in the first six months. ## Fewer Adults With SMA Are on Treatment Than Children Cure SMA's report puts 96% of children with SMA on treatment, against 90% of teens and 78% of adults, and the same gradient runs through mobility: 63% of children with SMA can walk, compared with 28% of teens and 24% of adults. Among adults currently on treatment, 72% say they worry the treatment may stop working. ## Two in Three People With SMA in the US Are Adults An estimated 9,000 to 9,500 people are living with SMA in the United States, and 64% of them are adults, a share Cure SMA says has grown over the past decade. The mortality rate for SMA has fallen nearly 60% in ten years. Among adults with SMA, 78% say the disease has affected their mental or emotional well-being, and 56% of single adults say they worry about marrying because of what it would do to their public benefits. "This report reminds us how far the SMA community has come, and how far we still have to go," said Kenneth Hobby, president of Cure SMA. "Behind every statistic is a person and a family working to invest in a fuller life with SMA, and their voices are what continue to guide our work." Cure SMA has collected data from more than 11,000 people with SMA and their families since 1996, and estimates it now reaches close to 70% of the US SMA community. August is SMA Awareness Month, and the organization is running its annual Spirit Week from August 8 to 15. Cure SMA's guidance on newborn screening is at [curesma.org](https://www.curesma.org/newborn-screening-for-sma/). ## FAQ **Q: Does newborn screening find every baby with SMA?** No. About 5% of children with SMA have a point mutation in the SMN1 gene that standard newborn screening does not detect, so a small number are still identified only after symptoms appear. **Q: What is spinal muscular atrophy?** It is a genetic disease caused by a missing or faulty copy of the SMN1 gene. It weakens the nerves in the spinal cord that signal the muscles, so the muscles weaken too, and walking, eating and breathing can become harder as it progresses. **Q: Is SMA treatment covered by insurance?** Four treatments are approved by the FDA, and Cure SMA says about 77% of people with SMA in the US were using one as of the last quarter of 2025. Cure SMA's 2025 State of SMA report found that about half of children and adults with SMA have received an insurance denial for their treatment, and that 49% of durable medical equipment users have received one for equipment such as a wheelchair. **Q: How many people in the US have SMA?** Cure SMA estimates that 9,000 to 9,500 people are living with SMA in the United States, and says 64% of them are adults.