Robert Oakeshott (Lyne, Independent) Share this | Hansard source

I too rise to congratulate the member for Fowler for introducing this important motion and getting debate going in this House on this important topic. I also congratulate Julie Cini and the likes of Professor Andrew Kornberg, who have been leading the charge on trying to get many of us to understand SMA, some of the basic differences between dystrophy and atrophy and the implications of those differences. Like 22 million of us and like, I am sure, many of the 150 members of parliament I am guilty of probably not understanding or knowing enough about SMA until I was faced with it personally when a former friend I played football with, Simon Munro, met the love of his life, Donna Liver, whom I am sure the network all know about. Their lovely son Finn was diagnosed with SMA, and from Port Macquarie they started the very long journey to understand (a) what it was, (b) what to do about it and (c) to campaign on many of the broader issues still unaddressed in public policy that could help a lot. On a personal level, I congratulate Simon and Donna for turning something which was a shock at the time and which caused a great deal of distress for them and their family into plenty of positive energy. I can report to the House that Finn, having been diagnosed two years ago, is doing very well in the loving care of his two parents and is also getting some fantastic treatment via Melbourne and the work of Professor Kornberg and others.

But there is still plenty of work to be done. I am pleased to see that the Australasian Neuromuscular Network has been formed and I really encourage anyone who reads or listens to this to go to their website, www.ann.org.au, to really get the better understanding of what we are talking about and what needs to be done. There are policy issues that I hope the minister for health will take away from this debate, such as the points I made before about not having SMA sit under the muscular dystrophy banner and getting it to stand on its own legs and that it continues to be labelled as a chronic disease. I have heard every speaker already mention the fact that the majority of SMA deaths occur before the age of two, and that needs to get much more consideration in public policy. Also, for parents like Simon and Donna who are absolutely fighting for the survival of children like Finn, a great deal of help and support is needed through the maze of the health system. A family from Port Macquarie working their way through the system and ending up in Melbourne to get some support should not be an example of the way this works, if it is working. This is an example of how state and federal health systems can and should do a lot better.

There is a need to have SMA listed as an NHMRC keyword. Even though the government is assuring everyone involved and I understand that it is not a problem, the network, and certainly Donna herself, wants it to be recognised and listed so that there can be research and medical and clinical trials done as a consequence of that keyword being there. I hope that that is considered. Another point that has come up in conversations with Donna and Simon, and also in the speeches I have heard so far, is the surprise of so many of us with regard to the prevalence of the regressive gene. Therefore, there is a need for genetic testing in a more systematic way so that the carriers, if they do find each other and, with Cupid's arrow, fall in love, can at least make mature and difficult decisions in the full knowledge of the implications. So I would hope a more systemic basis around genetic testing could be considered.

It is fantastic that this is being debated. I congratulate the network on pushing the member for Fowler and all of us to get this issue up the public policy pile and I hope that SMA is now starting to find its place and that the health department responds accordingly. (Time expired)

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