Patients such as Tauranga's Leisa Renwick, who have had miraculous results with melanoma drugs, will join dying patients and their families at Parliament today to petition the Government to lift Pharmac funding.
The Tauranga woman was told by Tauranga Hospital last May she had only weeks to live but expensive private treatment has saved her life.
After a course of gene-therapy drugs, she is now is remission.
The fact is he has people who are dying and will die if they are not treated. Some of them will die anyway.
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And now she is on a course of immuno-therapy drugs, paying $8500 every three weeks to have a dose of pembrolizumab (Keytruda is the commercial name) at a private hospital.
Her insurance company pays the private clinic fees of $2500 each time but will not cover the cost of drugs that are not available through Pharmac, the state's bulk-buying drug agency.
Asked how she afforded it, she said she and her husband both had good jobs, she had tapped into some funds, and she had cashed in her superannuation.
Pharmac was in negotiation with several manufacturers of what had proved to be wonder-drugs for some melanoma patients and some which might have wider applications.
Keytruda was registered in New Zealand last September but Pharmac's clinical professionals had classed it a "low priority" until it got better data on survivability.
Leisa Renwick is now well enough to have organised the petition, which will be received by her local MP, Simon Bridges.
"He is sympathetic but he emphasises that he is receiving the petition as a Member of Parliament, not as a minister, that health is not his portfolio and he can't intrude on the Minister of Health's portfolio."
She said she was not happy that Health Minister Jonathan Coleman did not have the time to meet the petitioners "yet when you look at his Twitter feed, he seems to be taking his responsibilities as Minister of Sport very seriously".
The medicine won't work for everyone but at the moment, they don't even have the chance to fight.
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Her message to Dr Coleman was one of responsibility: "They are accountable for this decision. They keep trying to say they are separate from Pharmac but Pharmac are owned by the Crown.
"The fact is he has people who are dying and will die if they are not treated. Some of them will die anyway. The medicine won't work for everyone but at the moment, they don't even have the chance to fight."
In the past there had been no treatment for melanoma but now there was.
Dr Coleman told NZME his diary was "chocka",
He said he had met a lot of people suffering from metastatic melanoma, which had spread throughout the body, and he had a huge degree of sympathy for them. But his position was the same.
"You have got to leave this to Pharmac to make the decision at arm's length."
He acknowledged that National promising to fund extra treatment for Herceptin in 2008 and keeping this at arm's length now looked like hypocrisy.
"But we have learned over seven years that you cannot just pluck individual drugs out of the air."
He would be trying to get more funding for Pharmac in the May Budget.