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

. I am pleased to be able to inform the House of some good news recently given to some constituents of mine—the Dierkx family—regarding treatment for their son Christian, who suffers from Hunter syndrome. This saga has been going on since December 2011, but I am happy to say that we have had a satisfactory conclusion.

Members might recall hearing the story of the Dierkx family in the media earlier in the year on Sunrise and in the newspapers. At the time, they were living in New South Wales in the electorate of Cowper and the member for Cowper was doing what he could to bring the story of the Dierkx family to national attention and to the attention of the minister. Christian, who was five at time, had been being treated with the Elaprase drug under the federal government's Life Saving Drugs Program since August 2009. Elaprase is the only known treatment for Hunter syndrome, the condition that Christian has. Hunter syndrome, or MPS II, is experienced by only around ten children in Australia.

Elaprase is a very expensive drug, well beyond affordability for families, but is considered a life-extending and life-saving treatment by parents and doctors. I believe the cost to the program is about $300,000 a year. As the member for Cowper stated in his speech to the House on 13 February 2013, Hunter syndrome 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 the cease to function. Elaprase provides an enzyme to displace the accumulation of these molecules.

In December 2011, Christian's parents were advised that the Commonwealth would no longer fund this treatment on the grounds that there was no evidence of significant neurodevelopment deterioration. This was obviously extremely distressing for the Dierkx family as they believed the drug was extending Christian's life significantly. They appealed the decision, but this was rejected in May 2012. They then sought ministerial intervention from the Minister for Health and Ageing. However, by February this year, Christian had not been treated with Elaprase for 12 months and medical examination in December stated that Christian had stopped growing.

The Dierkx family moved into my electorate earlier this year and Rob and Michelle immediately contacted my office for an appointment, which we held on 9 April. I wrote to the health minister about this issue. My argument was that, while ministerial intervention was being considered as part of the appeals process, the treatment should be reinstated until the process had been completed. On 23 May, I was informed by Rob that the treatment had been reinstated. This was terrific news and I sincerely thank the health minister, the member for Cowper, Sunrise and all the media who highlighted this young boy's plight and helped get the decision by the health department overturned. I would also like to commend Rob and Michelle, who have done everything they could possibly do to help their son Christian.