Posted by Michael Wonder on 17 Jul 2019
Perth boy battles cystic fibrosis, with a life extending drug frustratingly out of reach
15 July 2019 - In many ways Connor Barrett is just like any other kid - he loves Peppa Pig and the Eagles, his favourite player is Nic Naitainui.
The three-year-old Perth boy couldn't look healthier, but inside he is fighting a huge battle.
Connor has cystic fibrosis but the price of a life-extending drug is frustratingly out of reach. The cost - $250,000 a year.
Orkambi was rejected for listing on the Pharmaceutical Benefits Scheme three times because it was just too expensive.
In August it was finally passed for those aged six and over. This month a committee will meet to decide whether to subsidise the drug for two to five-year-olds like Connor.
