Cost of a life

first_imgCystic fibrosis sufferer 11-year-old Ellie Haikalis needs the $300,000-a-year drug Kalydeco – which could potentially save her life – but her parents can’t afford it as it’s not a government subsidised drug. They are now faced with the choice to either sell their home or move to Greece where Kalydeco is subsidised. The Pharmaceutical Benefits Advisory Committee (PBAC), an independent committee which determines whether the government should subsidise a medicine, failed to make a ruling on Kalydeco in July. Cystic Fibrosis Australia chief David Jack says it could be March next year before the PBAC makes a decision on whether to subsidise the medicine, which is funded in every other developed country except Canada. Ellie was diagnosed in August and as a result of scarring, has just 66 per cent of her lung capacity left. “How can they put a price on my child’s life?” asks Ellie’s mother Rachelle, who’s planning a fundraiser at the WestWaters Hotel in Caroline Springs on December 8. Facebook Twitter: @NeosKosmos Instagramlast_img