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Spinal Muscular Atrophy

May 26, 2021 | MPTP Inquiry, News, Parliament, Regional Bus Inquiry

Mr BARTON (Eastern Metropolitan) (11:46): My question today is for the Attorney-General, representing the Minister for Health. I have been contacted by a constituent of mine, Sandra Cook, who believes more needs to be done to treat babies born with spinal muscular atrophy. This condition is life limiting, with 95 per cent of babies born with type 1 not surviving past 18 months. There is a treatment for this condition, a gene transplant. Sandra has experienced the effectiveness of this treatment firsthand, and her grandson, who was diagnosed with spinal muscular atrophy, received the gene therapy and is now a healthy, normal child. However, for this treatment to be successful it must be performed as soon as possible; therefore my question is: will the government consider testing newly born babies for spinal muscular atrophy alongside the heel prick test so that they can received the treatment they need before it is too late?

Spinal Muscular Atrophy

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Ms SYMES (Northern Victoria—Leader of the Government, Attorney-General, Minister for Resources) (11:47): I thank Mr Barton for raising this matter in the chamber for Sandra and her family—those important matters. It is certainly beyond my capacity as the representative of the Minister for Health to provide much more than a commitment to get an answer for you from the Minister for Health.

RESPONSE RECEIVED 31ST MAY 2021 – Hon. Jaclyn Symes

The Victorian Government is committed to continuing to ensure that evidence‐based, high‐quality screening is available to all newborns in Victoria. The Newborn Bloodspot Screening National Policy Framework (the Framework) outlines a
coordinated approach for assessing conditions for inclusion in Newborn Bloodspot Screening (NBS) Programs in Australia.

The Framework also outlines a national governance approach that is designed to promote transparent and evidence‐based decision‐making in relation to the addition or removal of conditions from NBS Programs. Inclusion of new conditions requires endorsement from all States and Territories.

Spinal Muscular Atrophy (SMA) has been recommended to undergo a detailed review under the Framework. A pilot program underway in New South Wales and the Australian Capital Territory was established for the purpose of gathering evidence to assist the decision‐making process. Victoria is committed to progressing a detailed review of inclusion of SMA in the Newborn Screening program under the Framework.


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