Krystal Hekau is one of 206 women in a nationwide cancer support group who have died since a petition calling for new drugs to be funded in October. Photo / Michael Craig
Krystal Hekau is one of 206 women in a nationwide cancer support group who have died since a petition calling for new drugs to be funded in October. Photo / Michael Craig
Mother of two Krystal Hekau never lived to learn Pharmac was considering funding the life-extending cancer drug she had been battling for.
She died on May 4, about a month short of her 37th birthday, and a few months before last weekend's announcement about Ibrance.
Hekau joined hundreds at Parliamentlast October to present a 32,000-signature petition calling for the drug, and others, to be funded. Her husband, Ofa, is filled with pride at her efforts, but laments Pharmac still won't be making a final decision about the drug until April, 2020.
"It's almost giving people false hope," Ofa said.
"I'm glad Nina was there on the front line for that push. It's a bit late for us, but at least what she did wasn't a waste," he said, using his nickname for his wife.
Sweet Louise chief executive Philippa Reed in front of photos of Anna Southern, one of 206 members of the support group who have died since last October. Photo / Dean Purcell
Hekau is one of 206 women in nationwide cancer support group Sweet Louise who have died since October's petition - reaching the bleak 200 milestone almost the same time Pharmac delivered its news.
And a 100 more could be dead by the time Pharmac makes its final decision in seven months' time, the organisation's chief, Philippa Reed, said.
"We don't want another 100 women to die," she said.
The group says the timeline is simply too long and wants a decision made by October 13 - metastatic breast cancer awareness day.
"[The announcement] is a step forward, but we still want more progress, more money and more urgency: a greater sense of urgency and more transparency.
"It is bittersweet. It's tinged with sadness."
The Health Minister says his hands are tied as Pharmac is independent of the Government, but the Opposition says the agency needs to be faster, better funded and more transparent.
"For them to hopefully one day understand how much I tried. And how much of a fight I put up to be here for them," she said.
Ofa is now looking after their 4-year-old daughter and 5-year-old son in Auckland's Weymouth, and looking to take the family back to their home, Niue, at the end of year.
"I would have loved to have stayed and worked," he said on Friday.
"But it wouldn't work for my kids. It's easier on them. Maybe at later stage we'll move back to New Zealand."
Pharmac in August proposed funding another life-prolonging drug that had been demanded by patients – Kadcyla – and aims to do so by December.
"Let's see that same urgency with the next lines of drugs," Reed said.
Kadcyla would likely only help up to a fifth of those with advanced breast cancer, while the majority of patients continue to wait for Ibrance, she said.
Trials show the latter drug - taken in conjunction with others - can slow the progress of cancer and potentially prolong the lives of patients by months.
Australia recently gave it public funding, but it costs about $6000 a month to get privately in New Zealand.
Pharmac director of operations Lisa Williams said there were two drugs it was considering to treat advanced breast cancer: Ibrance (the brand name for palbociclib) and Kisqali (ribociclib). A third supplier could also seek to register, she said.
"We are seeking commercial bids from the suppliers of these medicines," she said.
"If we reach an agreement with a supplier we would then consult on the proposal."
But Williams said cancer medicines were just one tool.
"Most cancers are controlled using surgery and radiotherapy," she said.
Pharmac's announcement on Sunday came after the Government revealed it was giving the agency an extra $60 million over two years as part of a wider cancer action plan.
Health Minister David Clark said he understood calls for Pharmac's decision-making to be sped up, but that he could not interfere in its decisions.
"That's why I welcome Pharmac's announcement this week that it plans to assess funding applications for new cancer medicines at the same time as the Medsafe process," he said.
That change could cut the time taken to fund medicines by up to 15 months, Clark said.
National Party heath spokesman Michael Woodhouse said although the Pharmac model was solid, it needed to be swifter.
"The reality is it takes far too long. Some of these decisions are taking months or years and we think they can be sped up," he said.
Woodhouse said he wanted timeframes set for Pharmac's work.
"There is no doubt they could make those decisions faster if they had better organisation, better resources and strong engagement with pharmaceutical companies," he said.
