Young Wagga people with cystic fibrosis have been left devastated as access to a life-changing drug has been once again put beyond the reach of many.
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The Pharmaceutical Benefits Advisory Committee has rejected – for the third time – an application to have the drug Orkambi listed on the Pharmaceutical Benefits Scheme (PBS).
The government has not yet reached an agreement with drug company Vertex, which manufactures Orkambi, over price.
Wagga grandfather Peter Castles has been left immensely frustrated by the latest PBS rejection.
Mr Castles’ teenage grandson Jack has been taking Orkambi for about five years as part of a study, but his grandfather’s joy at seeing Jack’s health stabilise is tempered by the knowledge that other young people are being denied the chance to use the drug, which costs about $250,000 a year without government subsidies.
Mr Castles said Orkambi had made a huge difference to his grandson.
“Jack has more energy. He has fewer chest infections,” Mr Castles said.
“He still needs regular scheduled visits, but there have not really been any extra hospitalisations or treatments.
“It’s so frustrating. The government is looking at only about 1000 people Australia-wide who would be helped by Orkambi. It’s not really a lot amount of money.
“This is basically an argument between the government and the drug company about price and people with CF who could be helped have been caught in the middle.
“It’s just so frustrating.”
Nettie Burke, the chief executive officer of Cystic Fibrosis Australia, said that, yet again, the cystic fibrosis community has been left “dramatically disillusioned” by the health system.
“We need access to Orkambi and we will continue to fight and provide the government with possible solutions as we work towards better health outcomes for all,” Ms Burke said.
“Although Cystic Fibrosis Australia (CFA) is not aware of the confidential financial negotiations between the government and the drug company we are frustrated that they have failed to come together in a financial agreement to ensure access to a life extending drug for people with CF.”
Mr Castles has written to Member for Riverina Michael McCormack, asking for his assistance.
