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Guyon Espiner investigates Pharmac: The secret list

24 May 2019 Guyon Espiner - Radio New Zealand

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.

This is the second story in a four-part investigation into how Pharmac works and whether its model is costing lives. The third story will be online on Monday. The first story is hereThe NZ Buyer’s Club.

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’.”

Five years ago, drug company Vertex made an application to government drug-buying agency Pharmac to have Kalydeco funded for New Zealanders. It took until this month for Pharmac’s main advisory committee to recommend it for funding. Now Kalydeco joins more than 100 medicines and devices on Pharmac’s waiting list, where about 30 medicines have been languishing for more than five years, 10 have been waiting more than a decade, and one medical device has been parked for 15 years.

The list leaves patients with cancers, rare disorders or common conditions such as diabetes and allergies, without funded access to approved drugs. While they wait, New Zealand continues to rank at the bottom of the developed world for access to medicines.

The ranking of the items on the waiting list is top secret, so the Porters have no idea how long it will be until Otis can access Kalydeco. “It could be anywhere from 10 days to 10 years,” Eddie says. “We don’t know where it’s ranked on that list. We don’t know what else is on that list. We don’t know how long the list is.”

Pharmac’s chief executive Sarah Fitt says the rankings will never be released. “It’s the most commercially sensitive piece of information we have.” She says it could affect how drug companies deal with Pharmac. “If they know that they are high on the list, they are not going to necessarily want to negotiate better pricing.”

But the tactic means while Pharmac plays the long game in its commercial negotiations, patients play the waiting game and, with little information, they often wait in the dark.

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