In an Australian first, all babies in the ACT are to be offered free testing for two potentially fatal but rare genetic disorders from 1 July under a new screening program.
Announced in NSW by the State’s Minister for Health, Brad Hazzard, free blood tests for Severe Combined Immunodeficiency (SCID) and Spinal Muscular Atrophy (SMA) are to be offered to parents in both the ACT and NSW within 48-72 hours of their baby’s birth.
Mr Hazzard said the tests would be permanently added to NSW’s Newborn Screening Program which also provides testing for babies born in the ACT, following a successful four-year trial at the Sydney Children’s Hospitals Network.
“The screening tests will be provided to around 100,000 babies each year, saving the lives of up to 13 newborns likely to have the genetic disorders, including 10 from SMA and three from SCID,” Mr Hazzard said.
“I urge other States and Territories to screen newborns for both these genetic disorders as we are doing in NSW to give babies with SMA or SCID the best chance of survival,” he said.
“With newborns receiving these tests for SMA and SCID in their first three days, parents can have greater confidence their baby will thrive in their first year of life.”
Mr Hazzard said SMA occurred in one in 10,000 births and caused progressive muscle wastage and weakness.
He said it was the leading genetic cause of infant death and, without treatment, newborns had a life expectancy of around nine months.
“SCID occurs in one in 40,000 births and results in a weakened immune system,” he said.
“It is usually fatal in a baby’s first year of life due to infection.”
Mr Hazzard said however that most babies with SCID (around 94 per cent) would survive if they were provided with life-saving stem cell treatment before they were three and a half months old.
