One hundred women.

That's how many members of a breast cancer support group have died while a committee of MPs has been considering petitions calling for Pharmac to fund drugs that could prolong sufferers' lives.

The nationwide support group Sweet Louise recently passed the grim milestone.

"We've got some beautiful photographs of some of our members in our office, and there's now only one left who's surviving," Sweet Louise chief executive Philippa Reed said.


"It really seems to have taken its toll on all those who are fighting so hard, to continue to be losing these wonderfully courageous women."

Sweet Louise is a nationwide support group for women and men with advanced breast cancer.

The petitions, signed by 35,000 people and presented to Parliament on October 16 last year, called for Health Minister David Clark and Pharmac to fully fund the cancer drugs Kadcyla and Ibrance.

Clinical trials show Ibrance, taken in conjunction with other drugs, can slow the progress of the cancer and potentially prolong the lives of patients by some months.

In New Zealand it costs around $6000 a month, which some women are self-funding. Those who cannot afford it miss out.

In Australia, which announced recently that Ibrance would be publicly funded there, it will cost just over $40 a month.

The health select committee has been hearing submissions on the petitions and will report back to Parliament later this year.

As well, Pharmac's expert oncology committee is due to decide by next month on whether the drugs should be fully funded here.

In that time, potentially another 16 women will have succumbed to breast cancer.

"It's taking a long time to get a real response," Reed said.

"This has been an unprecedented move, that so many of our members have become active themselves and put so much effort into research and into putting their case, and at the moment we're not seeing any real response to it."

More than 600 Kiwi women die each year from breast cancer, the nation's third most common form of cancer.

Sweet Louise chief executive Philippa Reed stands in front of images of Anna Southern, who was one of 100 members if the support group who have died since last October. Photo / Dean Purcell
Sweet Louise chief executive Philippa Reed stands in front of images of Anna Southern, who was one of 100 members if the support group who have died since last October. Photo / Dean Purcell

Ministry of Health data released data last year showed cancer remained New Zealand's number one killer, with more than 23,000 people diagnosed every year.

More than 9500 people died from cancer each year, representing 31 per cent of all deaths recorded in New Zealand.

Lung cancer alone kills about 1800 New Zealanders every year.

Auckland woman Anna Southern, who was a member of Sweet Louise since 2012, died in January from advanced breast cancer.

She campaigned for years for breast cancer drugs including Kadcyla to be fully funded.

A family member who declined to be named, said Southern had been actively involved with Sweet Louise and had she been well enough, she probably would have joined in taking the petitions to Parliament.

"Whether that would have helped her at that stage, I honestly have no idea."

Southern would have wanted women to be given all the options available to them.

"I think it's important that people have a better understanding that there are these drugs that currently aren't available at the moment. But I also do appreciate that there are so many different groups who have equal entitlement to get what they need," the family member said.

Prime Minister Jacinda Ardern has asked Clark about options for early access to new drugs for some patients.

Clark said he completely understood the desire for access to the latest pharmaceuticals and had asked Pharmac and the ministry to hurry up their work on it.

"Analysis of the initial scheme in the UK found that spending would have done five times as much good if the money had stayed within general NHS system.

"The UK made changes after that, and the Ministry of Health will review evaluations of the revised scheme once they are available, so that we can learn any lessons from their experience," Clark said in a statement.

It was too early to talk publicly about what early access might look like in New Zealand.

Clark said he'd also asked Pharmac to report back on work he requested on the timeliness and transparency of its decision-making.

Pharmac chief executive Sarah Fitt has previously said the agency understood patients, their families and whānau wanted the newest medicines in the hope they would provide the best possible health result. But Ibrance and Kadcyla were just two of many medicines Pharmac was considering for funding.

The to-do list

What is the health committee considering?

• Two petitions signed by around 35,000 calling for full funding for two cancer drugs - Ibrance and Kadcyla for women with advanced breast cancer
• Whether there should be a review of the Pharmac funding model and who should carry it out

When will the committee decide?

• The committee has ruled out its own inquiry into Pharmac, saying it should be independent
• It is hoping to have a draft report done by late May on the petitions and the review issues. The committee will then have to agree on the report before it is finalised and goes back to the House

Is there any other way the drugs could be funded?

Pharmac's expert group on cancer drugs is also considering whether they should be fully funded and are due to report back on the application in May.