Red tape blocks chance at life

Southern Gazette (South Perth) - - South Perth - Su­sanne Reilly

A SOUTH Perth cou­ple say they are just try­ing to “save their son’s life” but are be­ing blocked by “gov­ern­ment red tape.”

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.

The cou­ple ap­proached the com- pany (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 possi- ble 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.”

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