BEGA MP and NSW Infrastructure Minister Andrew Constance is calling on the federal health department to “do the right thing” and reconsider its refusal to fund a national hydrocephalus registry.
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Mr Constance said he “100 per cent” supported the call for the registry and said it was “outrageous” that both state and national health departments had not established it.
“I don’t understand why it hasn’t happened,” Mr Constance told the Bay Post/Moruya Examiner.
“It just seems to me that, if there’s a legitimate reason and explanation for not having one, the health departments need to outline why.”
His call follows long-term lobbying from Jane and Brad Coppin, of Moruya, on behalf of their daughter Darcy, 12, who has undergone repeated brain surgery for hydrocephalus (a build-up of fluid).
They have launched the Dollar for Darcy campaign to raise funds for the registry.
“This has gone on for years,” Mr Constance said.
“Jane has lobbied and advocated so hard and it’s like this road block that exists as to why it just can’t be delivered.”
A high number of hydrocephalus surgical procedures fail within two years and surgeons and advocates say a national registry is vital to improve research.
He acknowledged the state government had not committed funds either, but said that, ultimately, it was a federal responsibility.
He did say, however, he would continue to push the cause to his colleagues.
“There’s no point in individual states setting this thing up and having it replicated eight times,” he said.
“It’s better to be done nationally and to be done once.
“I will continue to call for the registry to be put in place so kids right across the whole nation can benefit.”
He said the estimated cost of $200,000 a year to operate the registry made the delay “more ridiculous”.
“We’ve got a state budget that exceeds $20 billion,” he said.
“I couldn’t tell you what the Common-wealth budget is at the moment, but there’s tens of billions of dollars spent on health each year in Australia and the federal health department is saying that they’re worried about $150,000 or $200,000 a year; it just doesn’t make sense.
“I really want the nation’s health department to reconsider this and do the right thing.”