Patients who have had miraculous results with melanoma drugs will join dying patients and their families at Parliament tomorrow to petition the Government to boost funding for Pharmac.
One of them, Tauranga woman Leisa Renwick, was told last May that she had only weeks to live but expensive private treatment has saved her life.
After a course of gene-therapy drugs, she is in remission and 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 affords it, she said she and her husband both have good jobs, she has tapped into some funds, and she has cashed in her superannuation.
Pharmac is in negotiation with several manufacturers of what have proved to be wonder-drugs for some melanoma patients and some which may have wider applications.
Keytruda was registered in New Zealand last September but Pharmac's clinical professionals have classed it a "low priority" until it gets 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".
Her message to Dr Coleman was one of responsibility: "The fact is he has people who are dying and will die if they are not treated ... the medicine won't work for everyone but, at the moment, they don't even have the chance to fight."