Bert Van Manen (Forde, Liberal Party) Share this | Hansard source

It's a pleasure to rise on this motion moved by the member for Bonner, who has brought this important issue to the House to make our communities more aware of this life-changing and life-ending disease. Spinal muscular atrophy is the No. 1 genetic killer of infants under the age of two in Australia, as has been mentioned by the member for Fowler and also the member for Bonner. One in 35 people in Australia are carriers of the SMA gene.

The Australian government has invested significantly in the space of genetic testing and SMA treatment as part of its ongoing development to broaden the range of health services across this country. As the member for Bonner was remarking in his closing comments, we're now calling on the remaining state and territory governments to implement SMA testing into their newborn bloodspot screening programs, following the advice from the Health Chief Executives Forum. The newborn bloodspot screening programs in Australia are managed by the state and territory governments, and operate independently of each other. You would think that in the 21st century issues such as this would, from a health perspective, have some level of uniformity across our country. It's disappointing to note that there are still state governments who haven't introduced this additional screening to their NBS programs, and I'm sad to say that Queensland is one of those.

All of the states have committed to ensure quality and consistency across their programs through the NBS National Policy Framework, so I join the member for Bonner in calling for the Queensland government in particular to step up to the plate in this regard. Through the National Health Reform Agreement, the Australian government has made a funding contribution to the state and territory governments of 45 per cent of the growth of costs in all public hospital services, including population screening and NBS programs. The Commonwealth government has made the commitment to provide the funding to assist the state governments to roll these programs out, so I say there is no reason the state governments shouldn't be including these tests in their screening programs.

It was encouraging to see the recent trial project in New South Wales that demonstrated the effectiveness of screening for SMA in the newborn bloodspot screening program. I also recognise Western Australia's announcement of a test program for SMA testing, which will commence following assessment of the benefits and harms and the required resources in WA. Early detection through the NBS screening programs is vital in providing this life-changing information to families. Unlike a number of others that have already contributed to this debate, I have not had the experience of family, friends or people I know who have suffered the loss of a child as a result of spinal muscular atrophy, but I have seen the devastation in families who have lost young children for other reasons. I know the effect that has on families, and I would envisage it would be no different for a family who has lost a young child as a result of SMA. I think, as we've all reflected at various points in this place, no parent should have to bury their child. We can assist in making the lives of our children better by having these treatments and these processes in place to identify these issues early on in the piece, before the child is even born; it gives us the opportunity to provide the treatments that are necessary.

I'm pleased to say that this government continues to expand the PBS to include drugs like Evrysdi to ensure that these are now available to people who require treatment for SMA types who are aged 18 years or under. It's an oral form of treatment and therefore a less invasive treatment option for patients compared with spinal injections.

As I have said already, the government is seeking to ensure it provides the support for a range of health services across the country. I commend the government's work. I commend the work the member for Bonner has done in this space.

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