Rob and Michelle Dierkx were told their seven-year-old son Christian had Hunter Syndrome, a disorder caused by a missing or defective enzyme in the body, two weeks after he was born.
Once a week, Christian receives elaprase treatment, which helps with the physical aspects of his condition.
Last year, the Dierkxes found out about a clinical trial overseas to treat the condition in the brain.
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READ NOWThe couple approached the company (The Shire) and were told that they would extend the trial to Australia.
‘The company informed us they would be doing a feasibility study and they had narrowed it down to two hospitals but hadn’t chosen one because there was an issue with Australian guidelines,’ she said.
Those guidelines preclude trial participants from receiving the elaprase treatment; however, The Shire stipulates that the patient must be undergoing the elaprase treatment, as both treatments work together.
‘So now we are at a standstill,’ Mrs Dierkx said. ‘Christian can’t speak for himself so I am his voice. If he could talk for himself, he would be telling the government to ‘give me a chance, give me a fair go at life.’
The Dierkxes have approached Swan MHR Steve Irons for assistance.
Mr Irons said: ‘What is precluding the trial from commencing is Shire Australia’s request that the Australian Government continue to fund patients receiving the LSDP subsidised IV Elaprase while Shire Australia pays for the additional experimental treatment.’
He said this meant the Australian Government would therefore be partly funding the trial and so would be responsible for possible adverse outcomes. The department and the minister’s office were working with Shire Australia to reach a resolution, he added.
To Mr Dierkx, however, it feels like ‘we are caught between the pharmaceutical company and government red tape and in between that is our dying son.’