Pharmac has turned down funding for an expensive drug to treat a rare blood disorder for a small number of patients.
The state drug-purchase agency says the unreasonably high price being sought by the drug-maker is behind its decision.
Eight patients with the rare blood disorder known as paroxysmal nocturnal haemoglobinuria (PNH) have urged Pharmac to fund the drug Soliris (eculizumab) which they say is a life-prolonging treatment.
The agency signalled in May this year that it was likely to decline funding, but has been consulting since.
On Thursday, it said drug-maker Alexion wants $670,000 per patient a year.
Pharmac chief executive Steffan Causaz said that makes it one of the most expensive medicines it has evaluated and the price is higher than Alexion charges in some other countries.
"Let's get around the negotiating table with a reasonable price that reflects the benefits and we can get on with making this drug available to New Zealanders with PNH," he said.
"Other companies can do it, even in similar situations where the disease is rare, the treatment is innovative and new and the condition is life threatening as it is with PNH."
Pharmac said eculizumab could help up to 20 patients a year at a cost of $10 million a year, but tens of thousands of New Zealanders could miss out on new medicines.
