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

I second the motion. I thank the member for Bonner not only for bringing this motion before us but also for his ongoing advocacy in respect of spinal muscular atrophy. Looking back to August, that is the month when we recognise SMA. Not just is this a debilitating disease; it is a killer disease. It is the leading genetic killer of infants under the age of two in this country. To put the matter in greater perspective, one in 6,000 babies are born with SMA.

SMA is a rare motor neurone disease that causes progressive deterioration of the motor neurons, the spinal cord and the muscles surrounding the area, like those affecting the neck, the trunk, the arms and the legs. They are the muscles that control posture and movement and the respiratory muscles which control the breathing. Over time, coughing becomes very difficult. As a matter of fact, the inability to cough is one of the significant aspects of SMA that causes the death of children suffering from the disease.

Alarmingly, SMA occurs not only in children but also in adults. Many experience the late onset of this disease, particularly types 2, 3 and 4, and it has absolutely life-changing aspects. For many individuals impacted by SMA, the symptoms may develop as early as at three months of age, yet for others who are mildly affected by types 2, 3 and 4 the disease may not be visible until they are in late childhood or even, as I said, early adulthood. Sadly, children with type 1 SMA usually do not live beyond their second birthday.

Another statistic that it is worth acknowledging, given the importance of ongoing engagement with and awareness of the condition, is that one in 35 Australian adults carry the regressive gene that causes SMA, and most people are simply unaware of it. What that means is that, if one person is a carrier of this defective gene and has a child with another who is similarly a carrier of the gene, they have a one-in-four chance of having a child born with SMA. This is a statistic that should be a concern to all Australians, and that is why the Health Chief Executives Forum has encouraged all states and territories to include SMA in newborn screening programs, particularly following the success shown by the programs operating in New South Wales and the ACT. In fact, I'd go further and say that, given the success of the newborn screening programs, we should establish a national screening program that operates uniformly across all states and territories. This is where we require the Commonwealth to work cooperatively with all our states to at least establish a consistent outcome.

SMA is a matter close to home for my family, having witnessed the impacts of the dreadful disease. In 2010, my cousin, Tamara Hayes, lost her daughter, Summer, to SMA. You can imagine the absolutely tragic and devastating time that the family has had after losing a precious little girl. To Tamara's credit, she used her experience to become an advocate on this very important issue. Tamara advocates for others to ensure that they are aware of, and better equipped to deal with, SMA as a real issue with respect to their children.

I can't imagine the grief that families go through when they lose a child—it's simply beyond reckoning. But what it does mean is that we must do better. Clearly, we must work to ensure that better support is provided to families, including the availability of genetic screening, and to those families that are found to be carriers of the regressive gene. While there is currently no cure for SMA, there is certainly a lot of research being invested into this condition with respect to both genetic testing and SMA treatments, with some promising treatments now being tested in clinical trials. This is why we must continue to support the investment of further research into SMA and its treatments.

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