24 May 2019 - Desperate patients are being left in the dark as to when PHARMAC will fund medicines. Guyon Espiner asks why the drug-buying agency operates with such secrecy.

Three weeks after their son Otis was born, Emma and Eddie Porter found out he was likely to die before them. Their specialist told them he had cystic fibrosis and a life expectancy of 37, but they were in luck - the type of gene mutation causing Otis' condition meant he would respond well to medicine. "There's this amazing medicine called Kalydeco which will effectively switch off the cystic fibrosis - that's how it was explained to us," Eddie recalls.

"In the next sentence he explained, 'It's not funded in New Zealand and if you were to buy it, it's going to cost you $360,000 a year'."

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