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A GOORNONG family should not give up hope on accessing Kalydeco, says Cystic Fibrosis Australia chief executive Michelle Skinner.
Ms Skinner said while it was recommended the drug be subsidised with a range of conditions, those limitations could be overturned.
She said her organisation was keen to see the drug made readily available to the 200 Australians who needed it.
“I do not want them to give up hope,” Ms Skinner said.
“The Department of Health is very committed to making this drug available.
“Drug company Vertex is committed to ongoing negotiations. So I do not want them to give up hope.
“This drug will be available but it’s about each party agreeing to the condition placed on the drug.”
Cystic Fibrosis Australia will meet with the federal Department of Health in coming weeks.
“We are actively advocating for the cystic fibrosis community,” Ms Skinner said.
“I have to acknowledge that the cystic fibrosis community have been extremely patient and respectful of the process and they just want to know when this drug is available.
“This process has been ongoing for 12 months.”
Vertex last month said it was "deeply disappointed" by the Pharmaceutical Benefits Advisory Committee conditions.
"The conditions of the PBAC recommendation will prevent patients who could benefit from Kalydeco from being able to get it, or from remaining on treatment even when demonstrating improvement,” senior vice-president Simon Bedson said.
A spokesman for Mr Dutton said the Pharmaceutical Benefits Advisory Committee needed to operate independently.
“While the government is extremely sympathetic to the needs of families affected by chronic illness, it is crucial that the PBAC process remains independent of politicians,” he said.
The spokesman said the government would respect that independence.
