03/08/2013 11:17
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Wednesday, 13 February 2013
Page: 1254


Mr HARTSUYKER (Cowper) (19:10): I would like to raise an issue relating to the health of a five year old boy, Christian Dierkx, and the distress this government is causing to Christian's parents, Rob and Michelle. There are two issues which I believe the government must address in relation to the Dierkxes. The first is the confusion over the decisions made by health authorities associated with the Life Saving Drugs Program. The second is the failure of the federal Minister for Health to deliver on an undertaking to provide the Dierkx family with a logical explanation as to why life-saving drugs have been taken from a little boy who is seriously ill.

Five-year-old Christian Dierkx has Hunter syndrome, or MPS II. Hunter syndrome, or MPS II, is a rare genetic disease which 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. It is caused by an enzyme deficiency. There are around 10 children in Australia who have Hunter syndrome/MPS II. Elaprase is the only known treatment for Hunter syndrome. Elaprase provides a vital enzyme to displace the accumulation of these molecules.

From August 2009 Christian was being treated with Elaprase, which was funded under the federal government's Life Saving Drugs Program. In December 2011, Christian's parents, Rob and Michelle Dierkx, were shocked when advised that the government would no longer fund Christian's treatment. The reason given was 'evidence of significant neurodevelopmental deterioration'. The Dierkxes disputed the reason and appealed in March 2012 with supporting evidence of a paediatric neurologist plus a staff physician in metabolic disease from Westmead Children's Hospital.

In May 2012 their appeal was rejected but the health department changed the reason. This time the health department claimed there was 'no published data that the lives of patients with a neuropathic form of MPS II are extended by Elaprase therapy'. This reason contradicts the government's own guidelines under which Elaprase can be continued. Those guidelines clearly state that continued eligibility is subject to demonstrating either (1) clinical improvement in the patient or (2) stabilisation of the patient's condition. Two specialists confirmed that Christian's condition has been stabilised. The Dierkxes have told me, and I know they have also explained to the minister in writing, that Elaprase treatment led to a physical stabilisation of Christian's condition, improving his movement, reducing the swelling of joints and leading to less facial swelling and less restriction to upper airways.

After the appeal was rejected, the Dierkxes wrote to the federal Minister for Health, Tanya Plibersek, on 9 October 2012 calling for her intervention and seeking a meeting. They pointed out to the minister in their letter, 'If this treatment is not reinstated it will shorten the lifespan of an otherwise healthy, active five-year-old who is not suffering from any other medical condition.' The minister wrote back saying she would provide them with a response 'as soon as practicable'. Three months later the Dierkxes have received no response from the minister or her office, and her office is not returning calls or responding to emails.

Last October I also contacted the minister's office seeking a meeting with the minister to discuss Christian Dierkx's situation. The minister's office provided me with an email address dedicated to such requests. On 17 October I sent an email requesting a meeting with the minister in the next parliamentary sitting week. I would like to table that email. Late last year my diary secretary again contacted the minister's office seeking a meeting and was advised that the minister's office would get back in touch with my office to arrange a meeting. It is February and we still have not heard from the minister or her office.

It is now 12 months since Christian was last treated with Elaprase, and as a result his physical condition is deteriorating. A medical examination conducted in December 2012 confirms that he has stopped growing and that he is suffering. The Dierkx family has already endured many challenges in relation to getting Christian the medical treatment that he needs. They have seen with their own eyes the benefits of Elaprase and regrettably they are now witnessing a decline in Christian's condition since the treatment was withdrawn.

Governments in the United Kingdom, the US, Canada and Germany fund Elaprase medication for Hunter syndrome patients. But in Australia it is so much harder to access.

The minister indicated she would respond to the Dierkx request for a review but now it appears this government is shutting the door on the family. I am calling on the minister to deliver on her undertaking and directly address the Dierkx concerns so that there can be doubt that Christian is able to receive the best possible treatment, which he deserves.

The SPEAKER: Is leave granted for the documented to be presented?

Leave granted.


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