Chris Hayes (Fowler, Australian Labor Party) Share this | Hansard source

August is the month for spinal muscular atrophy awareness. I seek to draw the attention of the House to this condition. It is, quite frankly, alarming. It is the leading genetic killer of infants under two in Australia, and that is why I have moved the motion appearing on the Notice Paper. Spinal muscular atrophy is a rare genetic motor neurone disease that causes progressive deterioration of motor neurones in the spinal cord. It can occur in both adults and children.

One in 35 Australians carry this regressive gene, which is compounded by the fact that most of us are not, or not fully, aware of our respective family histories. Tragically, 52 Australian lives are lost every month due to this incurable disease. The greatest risk for SMA patients coincides with the birth of their first child. This was horrifically the case for the CEO and founder of the Spinal Muscular Atrophy Association of Australia, Julie Cini. Julie Cini lost two daughters to SMA, one in 2005 and another in 2007. However, using her experience in disability and community service, Julie works tirelessly to not only raise awareness of SMA but also provide a support network for affected families.

This is also an issue very close to home for me, as my young cousin, Tamara Hayes, lost her daughter, Summer, in April last year. Tamara is up in the gallery with her mum and dad at the moment. That loss was an unbelievably tragic experience for the whole family. Since then, Tamara has dedicated herself to volunteering with the SMA Association, to offer emotional support and provide relevant information and genuine empathy and caring to other families suffering SMA.

Julie Cini, Tamara Hayes and the SMA Association have been working tirelessly to raise awareness and provide support to other affected families. The association has recommended several policy initiatives that they believe would make a difference should they be implemented. Such things as routine testing for carriers of the SMA gene can prevent the continuance of the disease itself. Currently individuals have to request the test be conducted, at a personal cost of $380 which is currently not rebatable from Medicare. If the disease cannot be prevented, sufferers must have access to appropriate proactive care. Families living with SMA spend a lot of time visiting a multitude of health-care facilities. In order to ensure access to all-round care, the association believes consideration should be given to establishing multidisciplinary clinics offering an appropriate range of care for those suffering from SMA. Further, the provision of government rebates and subsidies should be structured to enable the purchase of life-saving cough assistance machines. This would not only ease the burden on families living with SMA but, more importantly, allow those families the opportunity to care for the SMA sufferer in the comfort of their own home.

I note that the association is calling for spinal muscular atrophy to be listed as a keyword with the National Health and Medical Research Council. Through the association, the families are making a very significant contribution to fund research into this genetic anomaly, and public funding is desperately needed. Like sudden infant death syndrome, SIDS, spinal muscular atrophy is a silent killer, and those suffering and their families undoubtedly deserve the caring support of the general community. As it currently stands SMA Australia is somewhat alone in providing support, promoting awareness and searching for a cure. I find the commitment of Julie Cini and Tamara Hayes inspiring. They are genuinely making a difference by selflessly acting in the precious memories of their daughters. I also take the opportunity to advise the House that on Thursday this week SMA Australia will be in the House to brief members on the real and challenging problems associated with spinal and muscular atrophy, and I encourage all members if they have the time to please come along and try to make a difference.

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