The Government's drug-buying agency is planning to refuse funding for a highly expensive medicine wanted by up to 20 patients with a rare disorder.
However, Pharmac says before it rejects funding for the drug it will consult the public.
In January this year, eight patients with a rare blood disorder known as PNH urged Pharmac to fund a drug known as Eculizumab which they view as a life-saving medicine.
Pharmac said on Tuesday that Eculizumab would cost $600,000 annually for every patient that qualifies for it indefinitely, making it the most expensive drug it has considered.
The agency says up to 20 New Zealanders could need it at a total cost of $12 million a year and even if it had more money, that is too high to make it cost-effective.
Pharmac chief executive Steffan Crausaz told Radio New Zealand's Checkpoint programme the the cost is well in excess of the average New Zealand house for each patient every year.
Mr Crausaz said while there are some health benefits, others are questionable and funding it would mean other patients miss out.
"Were we to fund this and spend the $10 million or so that would be needed to do that, about 40,000 other New Zealander patients are missing out potentially on medicines for arthritis and cancer and other things that would have similar or better health gain."
Mr Crausaz said public feedback is sought on the decision and Pharmac would be prepared to change its mind.
A patient with a rare blood disorder says Pharmac has been misleading with facts and figures. Daniel Webby told Checkpoint a document released on Tuesday has overvalued the price per patient and life expectancy rates are higher than reported.
"I've got 10 years worth of data and there's a registry internationally of 1500 patients. So if they're questioning over 40 countries that fund this treatment, if they're questioning the data, then somehow they're privy to information that 40 other countries aren't."
People will have until late July to give their view, with a final decision expected in September or October.
