Federal Health Minister Peter Dutton has told worried parents of children with cystic fibrosis that he hopes negotiations over the listing of new life-changing medicine will be resolved as soon as possible.
But he says he can’t intervene to speed up the process which has dragged on since last year.
The Pharmaceutical Benefits Advisory Committee has recommended the drug Kalydeco be listed for government subsidy but has asked manufacturer Vertex to make it more cost-effective for the government.
Cystic fibrosis sufferers and their families on Wednesday travelled to Canberra to meet with Mr Dutton and call on the Abbott government to end the stand-off over the listing.
Kalydeco “turns off” the genetic defect that causes cystic fibrosis, a debilitating condition that clogs the lungs and digestive system with thick mucus.
However, the treatment costs more than $250,000 a year.
One mother, Leah Johnstone, asked Mr Dutton: “My son’s eight and how much is his life worth?”
“His life is priceless,” Mr Dutton responded.
“You as a mum, me as a father, and us as human beings, we’d want to list everything immediately.
“I’m hopeful we can resolve the issue as soon as possible.”
However, he said politicians shouldn’t be involved in deciding what drugs are listed, and he was happy to leave negotiations up to his department and the PBAC.
Ms Johnstone said she was unsatisfied with the minister’s response.
“It was a very political response,” the Adelaide mother told AAP.