When it comes to newborns’ heath, new research shows that concerned grandparents are taking the lead, with 85% expecting their state and territory governments to include a test for SMA (Spinal Muscular Atrophy) , as part of newborn screening immediately.
Each state and territory is responsible for the conditions made available for babies born locally. However, right now, this equity of access does not exist: only babies born in NSW or the ACT are tested for SMA as part of an ongoing trial program, and only WA has committed to implementing a trial, despite the 2020 recommendation for all states and territories to implement SMA newborn screening.
Early detection of SMA via newborn screening is critical. The earlier babies are screened for SMA and gain access to treatment, the greater the chance to live a life, without severe disability or death. Affecting one in 10,000 children, SMA and causes extreme muscle weakness to the extent that key milestones — crawling, rolling, playing with toys — fly by unmet, with many babies not living to see their second birthday.
The survey of Australian grandparents, parents, and expectant parents – commissioned in partnership by SMA Australia and the Genetic Support Network Victoria, and funded by Novartis Australia – found that:
· Almost all (96%) of grandparents list positive health outcomes as the most important hope they have for their children/grandchildren, compared to 61% of parents and 67% of expectant parents.iv
· 91% of grandparents believe newborn screening is a critical way of helping parents make informed health choices, compared to 83% of parents and expectant parents.v
· 92% of grandparents support access to newborn screening for all children born in Australia, compared to 84% of parents and 83% of expectant parents.vi
· 78% of grandparents believe Australia’s newborn screening program should include a test for the leading cause of genetic death in children, compared to 72% of parents and 69% of expectant parents.vii
Including a test for SMA as part of the newborn screening program has the potential to save the lives of 150 children in Australia over 5 years. Funding a test that costs approximately $10 per test is likely to identify 150 cases and save $3,197 million in health system costs alone, over 5 years. This represents a $2.18 return on every dollar spent.viii
To ensure that all children are given the best chance of living a good quality life, SMA Australia and the Genetic Support Network Victoria are calling on the state and territory governments to act quickly to include a test for SMA in their NBS programs.