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

I thank my honourable colleague for his contribution and his interest in spinal muscular atrophy. Only recently we organised a forum in Parliament House, and I know that the member for Barker was one of those who attended and that he has continued his interest in this very debilitating disease.

Very few things are as tragic as losing a loved one, which I have only just been through, having lost my father last week. It is even more devastating when you lose a child, an infant. Last month was Spinal Muscular Atrophy Awareness Month, a month where the SMA association wanted to actually ensure that people start thinking about this very debilitating disease, a killer disease. I seek to draw your attention, Mr Deputy Speaker, to the causes as, alarmingly, it is the leading genetic killer of infants under two years old in Australia. That is something I just did not know a couple of weeks ago. I am advised that internationally it is well recognised that a baby is born every six to seven hours with this disease. Spinal muscular atrophy is a rare motor neuron disease that causes progressive deterioration of the motor neuron and the spinal cord and the muscles surrounding that area. Muscles most likely to be affected are those around the neck, the trunk, the arms and the legs, the same muscles that control our posture, our movement and the respiratory muscles that control our breathing. Over time coughing becomes very, very difficult. As a matter of fact a lack of ability to cough is one of the things that actually people do die from. Alarmingly, it occurs not only in children but also in adults. A lot of people have had late onset of this disease and it has absolutely life-changing ramifications.

Just another statistic which is again something I was absolutely unaware of: one in 35 Australians carry the regressive gene and, regrettably, most people are unaware of it. Now, we do not know it in our family histories and if one carrier of a defective gene has a child with another carrier of that same gene, they have a one in four chance that their child will be born with spinal muscular atrophy. SMA is not a disease that is usually evident at birth itself, nor is it routinely tested for. For the most severely affected individuals, the symptoms develop as early as about three months and yet for those only mildly affected, evidence of this disease may not become manifest until a child is in their late childhood or even early adulthood. But I must advise that children with type 1 SMA usually do not see their second birthday. Tragically 52 Australian lives are lost every month to this, so far, incurable disease.

The greatest risk for parents 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, who is sitting in the visitors' seats second from the left. As the member for Barker just recounted, Julie lost two daughters to this disease, Montana when she was about 10 or 11 months old in 2005 and her daughter Zurlee that she lost in 2007. I also am aware that around about the same time she also lost her husband in a very tragic farming motor accident. Julie Cini, using her training, particularly in the disability sector and community service areas, now works tirelessly not only to raise awareness about SMA but also especially doing things within the medical community, providing a support network to those families affected, families that until they actually physically have the onset of this disease are completely unaware of it, as I was a few weeks back.

The issue is very close to home because Tamara Hayes, my cousin, is here with her mum and dad and she too lost her daughter, Summer, only last April. I have got to say it was an absolutely tragic and devastating experience for a family but it is certainly a credit to Tamara and the support of her mum and dad, Steve and Carol, that she now takes on the role of heavily getting involved and volunteering for the association to offer emotional support. The association also offers free medical equipment, a toy library, information and a network for other families who have been afflicted by this dreadful disease. Julie and Tamara and the SMA Association of Australia have been working tirelessly to raise awareness and provide support for other families. SMA Australia is currently the only support association for sufferers of this debilitating disease. It is a not-for-profit organisation and a charity but receives no ongoing funding from any government, state or federal. The association is urging the public to provide support to families. They have listed practical things they think could make a difference—things such as the provision of manual or powered wheelchairs; special beds; bath and toilet chairs; support and standing frames; breathing equipment; support seating equipment; switch toys for children; and travel assistance, particularly for regionally based families that must go to cities to be treated in hospitals.

In addition to the call for public support, the association has recommended several policy initiatives that they would like to pursue with government that they strongly feel would make a very significant, practical, beneficial change in the lives of sufferers and their families. First and foremost the association is calling for a national awareness and screening program. They advocate that routine testing and carrier testing for the SMA gene can prevent the continuation of this disease. Currently, individuals have to request such a test and it comes at a personal cost of somewhere between $380 and $400, none of which is rebatable from Medicare. Through this initiative, couples who are deciding whether to start a family would at least be able to avail themselves of the necessary information before pregnancy as to whether they are carriers. As I said, if they are both carriers they have a one in four chance of having a child with SMA.

SMA is also not tested in the IVF program. Subsequently, there have been numerous cases of IVF babies who have been born with and died of SMA during infancy. If this disease cannot be prevented, sufferers must have access to the appropriate, proactive care. Families with a member affected by SMA spend so much time visiting multiple healthcare areas. In order to ensure easier access to all-round care, it is suggested the community should consider access to multidisciplinary clinics offering standards of care for patients and their families.

The provision of government rebates and subsidies should also be recognised to enable the purchase of life-saving equipment such as the cough assist machine. As I said a little earlier, it is the lack of the ability to cough that generally causes death as a consequence of this disease. Providing rebates for such machines not only helps ease the financial burden; it also allows families the opportunity to look after and care for loved ones at home, as opposed to using hospital facilities.

In addition to these practical initiatives, the association is calling for spinal muscular atrophy to be listed as a keyword with the National Health and Medical Research Council. Though the association is making every contribution it can to further research into this genetic abnormality, public funding is desperately needed. Like SIDS, SMA is a silent killer and those suffering undoubtedly deserve our assistance.

I urge members of the House to take the opportunity to meet with members of the SMA Association to understand this debilitating disease and to be able to make a difference by being able to speak up about it. I welcome the opportunity to speak here tonight. (Time expired)

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