NSW, ACT announce free newborn testing for two rare disorders from July 1

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NSW and ACT newborns will be offered testing for two rare, but potentially fatal disorders from July 1. Image: iStock
Camera IconNSW and ACT newborns will be offered testing for two rare, but potentially fatal disorders from July 1. Image: iStock Credit: istock

In an Australian first, all NSW and ACT babies will be offered free testing for two rare but potentially fatal genetic disorders.

From July 1, parents of all new babies will be offered tests for Severe Combined Immunodeficiency (SCID) and Spinal Muscular Atrophy (SMA) within 48-72 hours of their birth.

The tests will be permanently added to the NSW Newborn Screening Program, funded by the NSW government at a cost of $1.3 million a year, 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 these genetic disorders, including 10 from SMA and three from SCID,” Health Minister Brad Hazzard said on Sunday.

The free tests will be offered to all newborns in NSW and ACT from July 1.
Camera IconThe free tests will be offered to all newborns in NSW and ACT from July 1. Credit: News Regional Media

“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.”

SMA is the leading genetic cause of infant death and occurs in one in 10,000 births.

It causes progressive muscle wastage and weakness and, without treatment, newborns have a life expectancy of around nine months.

SCID occurs in one in 40,000 births and results in a weakened immune system.

It’s usually fatal in a baby’s first year of life due to infection, but most babies with the disorder (about 94 per cent) will survive if they are given lifesaving stem cell treatment before they are three-and-a-half months old.

Other states have been urged to follow the lead of NSW and the ACT. iStock
Camera IconOther states have been urged to follow the lead of NSW and the ACT. iStock Credit: Supplied

Mr Hazzard said enabling newborns to receive the SMA and SCID tests in their first three days would give parents greater confidence that their baby would thrive in their first year of life.

“NSW is leading the way in funding newborn screening to ensure treatments can be provided as early as possible to halt the debilitating, sometimes fatal, impact of these disorders,” he said.

Originally published as NSW, ACT announce free newborn testing for two rare disorders from July 1

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