Steve Irons (Swan, Liberal Party) Share this | Hansard source

I rise to speak on the motion of the member for Shortland. We note that 28 February was Rare Disease Day. I support this motion that has three parts, including (1) noting the significance of the occurrence of rare diseases, (2) recognising the importance of access to trials and progress in the medical research field and (3) acknowledging the vital role which organisations play in treatment and quality of life of sufferers and investigating the calls from such organisations for the establishment of a centralised impartial national patient registry.

One such organisation which I have had an involvement with is Rare Voices Australia. Rare Voices Australia was established in 2012 with the vision to be the unified voice of all Australians living with rare disease. Rare Voices carries out the important task of advocating on behalf of approximately two million Australians who live with a rare disease. I am pleased to inform the House that this Thursday I will be hosting, with Rare Voices Australia, a barbecue to celebrate Rare Disease Day and see the launch of the publication The Australian Experience of Living with a Rare Disease here at Parliament House. I also note that the member for Shortland hosted the same barbecue last year. It is important that we, as parliamentarians on both sides of the House, do all that we can to raise awareness of this important issue which affects members of our community. I hope that many of my parliamentary colleagues will join with me on Thursday to hear firsthand the stories of people living with a rare disease.

Rare disorders are life threatening, often chronically debilitating and complex. They have been known to have affected the lives of people such as John F Kennedy, Venus Williams, Lou Gehrig, Dan Aykroyd and Missy Elliott—all of whom were diagnosed with a rare disease. I recently met with Lesley Murphy from Rare Voices Australia and she brought to my attention that whilst each instance of a rare disease may be sporadic, collectively, rare diseases are quite common within the community. In fact, it is estimated that approximately 10 per cent of the Australian population is directly affected by one or more of 8,000 rare diseases, and 400,000 of them are children.

Looking a bit closer to home, in my electorate of Swan, members might recall the story of the Dierkx family, whose six-year-old son Christian suffers from Hunter syndrome. This causes the build-up of molecules in the body and leads to the enlargement of joints, organs, heart valves and airways to the point where they cease to function. Christian began treatment with the use of the drug Elaprase—the only known treatment for Hunter syndrome—in 2009 under the Life Saving Drugs Program.

Unfortunately, in 2011 Christian's parents were advised that the Commonwealth would no longer fund the treatment on the grounds that there was no evidence of significant neuro-developmental deterioration. The Dierkx family at that time lived in the electorate of Cowper and received assistance from the member to have Christian reinstated onto the Life Saving Drugs Program by doing speeches in this place and in the main chamber, and also by involving the media. They then moved into my electorate of Swan in 2013 and immediately contacted my office for an appointment regarding the matter. I wrote to the then Minister for Health seeking for Christian to continue to receive treatment, at least until an appeals case was heard. Though ministerial intervention, I had the pleasure of informing the House, mid-way through last year, of the good news that Christian's treatment had been reinstated.

Christian's case highlights the unique challenges that each rare disease sufferer faces and also the fact that the issues faced by people living with rare diseases are similar, in that diagnosis is often difficult and delayed and treatment is complicated and very expensive. I just heard in the last speech about coeliac disease being difficult to diagnose, and I know that through my own wife, Cheryle, who has coeliac disease. It is these common challenges that we need to concentrate on in order to assist sufferers and invest in the betterment of their wellbeing.

One of the ways to assist in the diagnosis and management of a rare disease which is often brought up is through the establishment of a national patient registry. It is argued that such a national plan would provide a unified approach, leading to better coordinated care and better resource distribution, allowing us to achieve the best outcome for people living with rare diseases. I support the member for Shortland's acknowledgement that an investigation into the establishment of a national patient registry, free of commercial interests, for research purposes, would benefit the wellbeing of many patients. I commend this motion to the House and thank the member for Shortland for bringing it to the House.

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