Spinal muscular atrophy: AMAQ, Laura Gerber push for $10 heel test

A Queensland MP has joined the campaign for a test to be introduced to pick up a debilitating condition in newborns.

Doctors are demanding that Queensland families are offered the spinal muscular atrophy newborn heel prick test.

The Australian Medical Association Queensland has done the sums and found the test would cost only $10 per child.

“It’s a small price to pay for such a potentially life changing outcome,” the association’s president Chris Perry said.

“AMAQ believes we should follow the pilots conducted in NSW and the ACT and

introduce SMA testing to the newborn heel prick test so that Queensland newborns, who are

diagnosed with the disease, can begin treatment as soon as possible with improved health

outcomes and a better chance at life. Newborn screening will allow for early detection and intervention before the child develops symptoms.

“If treated properly within a few months of birth it can be life changing, allowing many children after treatment to lead full and healthy lives.”

The heel prick test has been on the radar of the AMAQ since 2019 when it called for the screening to be rolled out as part of a budget submission to the Queensland Government.

The estimated funding for the testing was $640,000 for the 2019/2020 financial year.

It is a stand-alone test which can’t be added to the other multi-tests for newborns.

MP Laura Gerber shows her support for the Move for Oakley. Pictures: Nigel Hallett

Kate and Grant Gough with Oakley, five months, and Arabella, 2

But Liberal National MP Laura Gerber wants the testing now so no more parents have to suffer like Kate and Grant Gough.

The story of the gaping differences in the lives of the two little girls called Oakley has brought home the need for urgency.

“This is something that has hit my heart,” the Member for Currumbin said.

“It could happen to anyone. If Oakley had been diagnosed at birth before symptoms were showing, then her whole life would be completely different.

“Our hope is that I can table the petition for change set up by the Goughs in the Queensland Parliament.

“NSW has been trialling the two-year pilot program and it’s been proven to actually save their health care system money.

“I don’t want to put a monetary value on an issue like this, but I cannot understand why Queensland hasn’t adopted the same program despite it being strongly recommended by the AMAQ.

“I’ve repeatedly written to the Health Minister (Yvette D’Ath) requesting they take immediate action – we need to move for Oakley, and we need to move now – this is a serious problem.” You can sign the petition here.