Tony Zappia (Makin, Australian Labor Party) Share this | Hansard source

It is difficult to contribute to this debate without repeating some of the matters and discussion points that have already been raised by other speakers. I commend the member for Macarthur for bringing this matter to the attention of the House, because it is indeed a serious matter. I for one have always looked at arthritis as being an adult's disease or illness or ailment. But the reality is that, as the member for Macarthur quite rightly points out in the motion, arthritis can affect anywhere between 6,000 and 10,000 young people. Indeed, even those numbers are questionable, because we don't have either a register or adequate research to establish what the real rate is of young people that are affected by the disease.

Nevertheless 6,000 to 10,000 young people are affected that we know of. For them, life can be incredibly debilitating. I can only imagine what it would be like for a young person, each and every day to deal with joint stiffness, pain, swelling, joint tenderness and possibly bone growth problems, which in turn affect the whole development of the young person. As a result of all that, it is more than likely the young person will be excluded from a whole range of daily activities that other kids would be able to participate in. Whilst there might be a little bit of support already in the form of perhaps a bit of guidance from their GPs and other health professionals, the reality is that it is a disease that is not curable at this point in time. Yes, there is support that can be provided to them. Certainly, by way of nutrition and maybe some forms of exercises, their life can be made a little better—in particular, exercises such as swimming and bike riding, which are not stressful on the joints and which can help with muscle strengthening aspects of it all. But, ultimately, they will not fix up the disease itself. That is something we should be focusing on, and this motion talks about that by talking about research and also establishing a register.

As a member of the Parliamentary Standing Committee on Health, Aged Care and Sport, having to confront parents of young children with any kind of debilitating disease is something that breaks your heart. I have said it in this place before and I will say it time and time again: it disappoints me that every time we see these young people, particularly if they have a rare disease that has not been properly researched, we can never find the money to carry out the research, to set up the registers or to give them the same support we do when it comes to other diseases, and yet we can, in the blink of an eye, find billions of dollars for defence equipment. I'm not saying defence equipment is not important; I am simply making the point that sometimes the amount of money that is being asked for is absolutely minuscule and it will change lives and even sometimes save lives. We can't find money for that but we can find it for other purposes.

One of the concerns I have about this particular disease, from the research I have been able to put together, is that, as other speakers have quite rightly said, it sometimes takes a long time for the diagnosis to be verified. That means that, for all of that time, the child goes undiagnosed, untreated and unsupported, and therefore has a much worse lifestyle than would otherwise be possible. One of the reasons for that, from what I understand and according to one publication, is that in Australia we only have 22 paediatric rheumatologists. That in itself highlights a shortfall in the medical profession. I'm not sure how well a normal GP would understand this condition or what sort of advice or treatment they should be providing, so one of the first things we need to do as a nation is to try to ensure that we have enough professionals in the medical field who are able to provide the advice and support that these children need so that they can, in turn, impart that advice to the GPs and so on. That's because without their support, obviously, we can't find those cures and treatments.

It's a disease which is quite often—in fact, too often—misunderstood and therefore neglected. So this motion goes straight to the point of having the register and carrying out the research, which I strongly believe we need to do, so that at least we give these kids a chance and, hopefully, one day find a cure for what is indeed a very debilitating disease.

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