This story was originally published on RNZ
People desperately seeking cancer treatment which could extend their lives by years have called on politicians to increase Pharmac spending.
About 100 cancer sufferers, their families and supporters took to Lambton Quay to deliver eight different petitions to parliament today.
For many – including one solo dad with lung cancer – they’re running out of money, and time.
It was a day to remember those who had passed, and those who are continuing to fight for more time. Tears fell as the marchers stopped at Pharmac’s offices for three minutes of silence, where its chief executive and chairman came outside to acknowledge them.
Among the crowd, Carl Taylor, who has lung cancer, was marching with his two sons. He had been told there was no hope for his survival until he learned of a drug that, it is claimed, could extend his life by three years.
However, the drug comes at a hefty price tag – about $6000 a month – and he only has $23,000 on his Give-A-Little page.
“So that’s only about three-and-a-half months worth and if I don’t get any more donations from that … because I’m out of money, I mean, I sold my car, I cashed in my Kiwisaver, I sold my welder and Xbox – all sorts of bits of pieces on Trade Me and privates sales and that raised a couple of months worth of it so I don’t know what’s going to happen when I run out of money.”
Ben Schrader has chronic lymphocytic leukemia, which almost killed him in 2016.
He was handed a lifeline when a drug company offered a window for sufferers to access their $100,000-a-year treatment at a reduced price.
“I’m actually really, really lucky in that I was able to gain access to that compassionate programme and it’s really unfair – desperately unfair, in fact – that those who followed after me don’t have that.”
The marchers want the government to fund better treatments for lung, breast, ovarian, leukaemia, and myeloma – a type of blood cancer.
Myeloma New Zealand chief executive Ken Romeril said there had been no new funding for this type of cancer for five years.
“We number now down at 19 [out of 20] in the OECD countries for drug spend and that’s not right.”
MPs from across the political spectrum stood at the front of Parliament to accept the petitions.
Rachael Tiuka sat on the steps of parliament shaking her head as MP Ian-Lees Galloway, told the crowd that there were a lot of things Pharmac did well, but the government was looking into improving the system.
“I was shaking my head because for these people it’s all about time. Time is of the essence because, you know, when you’ve got a terminal illness … every day counts so to hear excuses is really, really difficult.”
She has been fighting for her sister Wiki to receive the treatment she needs to extend her life as she battles advanced breast cancer and is fed up waiting for politicians to act.
“We’ve seen medicines being left on the waiting list for 10 years, well, that’s ridiculous. If it’s not going to be funded just say it: Take it off, it’s not an option, but I think it’s pretty sad when we don’t have a consistent approach to care.”
Pharmac chief executive Sarah Fitt would not comment on funding, saying that the day was about the marchers and what they had been through.
The petitions will be tabled by the various MPs.