Two Tauranga woman, each living with a terminal diagnosis, are calling for an independent inquiry into the Government agency that decides what medicines do and do not get funded, as they fight for better access to "game-changing" life-prolonging drugs in New Zealand.

Time is a precious thing for Tracy Barr-Smith and Sue Wall-Cade.

Both Tauranga women are living with stage 4 metastatic breast cancer and are known in their circles as "metavivors" - an amalgamation of their terminal diagnosis and 'survivor'.

When the Bay of Plenty Times first caught up with Barr-Smith in October, the 48-year-old was preparing to march on Parliament as part of a larger metavivors' collective to call for funding of life-prolonging drugs.

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The march has been and gone. Petitions with more than 30,000 signatures appealing to the Government for their cause have been handed in. The wheels of Government are turning, slowly.

But the fight is far from over.

"There's every chance I won't still be here if anything comes from this. But this, I hope, will be some sort of legacy," Barr-Smith said.

In her sun-drenched living room, Barr-Smith looks immaculate in blush pink as her clear blue eyes look out the bay window to the bush beyond. Wall-Cade sits on the neighbouring couch dressed in a flowing baby blue tunic. The two women are colourful, alert and full of life - fighting not just the system but also their diagnosis.

Barr-Smith explains the pair are now organising submissions to Parliament as part of their fight for funding for a treatment they say will extend the lives of metavivors by two to three years - potentially doubling the average survival rate of their diagnosis.

Tracy Barr-Smith has stage four metastatic breast cancer and hopes she can make a difference in New Zealand's health system. Photo / John Borren
Tracy Barr-Smith has stage four metastatic breast cancer and hopes she can make a difference in New Zealand's health system. Photo / John Borren

Ibrance, the brand name for palbociclib, and Kadcyla, also known as T-DM1 or trastuzumab emtansine, are already in use and funded or subsidised in other OECD countries such as Australia and the United Kingdom. The drugs are considered to be "game-changers" by many breast cancer patients. But you won't get much Government help for them here in New Zealand, not yet at least.

Barr-Smith and Wall-Cade hope to change this.

The October metavivors march on Parliament caught the attention of New Zealand's Health Select Committee, which has since asked for submissions.

"So right now, we are in the process of getting stories near and far from New Zealanders with metastatic breast cancer, via video, in writing, etc," Barr-Smith said.

The women will deliver those submissions to the committee next month .

For Barr-Smith, it feels like a small victory just to reach this point.

"We are taking it as a positive. The Health Select Committee is engaging with us, they want to learn more. I wish we would say the same about Pharmac."

In addition to the call for funding, metavivors are also seeking an independent inquiry into Pharmac and how it is run.

Barr-Smith and Wall-Cade say, in their view, Pharmac's practices are at odds with its objective of "providing subsidies for patients in exceptional circumstances".

"How is this not exceptional?" Barr-Smith asks.

About 300 women a year are diagnosed with stage 4 metastatic breast cancer - a secondary cancer that is incurable, for now. Many metavivors have moved overseas for access to cheaper life-prolonging treatment or used crowdfunding websites such as Givealittle to raise money, she said.

"Givealittle is not the new health system, but it's becoming that," Barr-Smith said.

In Malaysia or the United Kingdom, metavivors can receive the drugs for as little as $39 a month. In New Zealand, a round of Ibrance costs upwards of $6000 to $7000 a month. Kadcyla costs about $10,000 a month.

"We are one of the only countries in the OECD not funding this drug," Barr-Smith said.

"Pharmac has said New Zealand circumstances are different, I don't get it. We've all got the same blood, haven't we? We are all human."

Tracy Barr-Smith has stage four metastatic breast cancer and is fighting for better access to life-prolonging drugs. Photo / John Borren
Tracy Barr-Smith has stage four metastatic breast cancer and is fighting for better access to life-prolonging drugs. Photo / John Borren

In 2017, Tauranga metavivor Tracey Pay received a swell of Givealittle donations after her last chance at life was highlighted in the Bay of Plenty Times. The solo mother was fundraising to help pay for a course of Kadcyla, to give her more time with her two boys.

Last week, she died. Her funeral service is being held on Monday.

The grief and frustration felt by Barr-Smith and Wall-Cade is exacerbated by the knowledge Pharmac has prioritised treatment for erectile dysfunction over Ibrance or Kadcyla.

"It's gut-wrenching because you feel you are not in control of your own life. You are at the mercy of this agency deciding pretty much if you are going to live or die," Barr-Smith said.

"There's nothing you can do about it unless you have heaps of money and fund it yourself."

With perfectly coiffed short auburn hair, Wall-Cade nods in agreement.

A pile of paperwork at her side, Wall-Cade is armed with countless hours of research, facts and plenty of opinion - with Pharmac in her firing line. Her petite build is tense with anger and hurt.

"I think they feel we are just going to die. The way they are carrying on, I don't know if any of us will be alive to see these drugs come. I really don't."

Wall-Cade's voice stays firm despite quiet tears trickling down her cheek, saying she felt Pharmac was completely monetary driven.

Being given a terminal diagnosis was already a big thing to deal with but then dealing with the struggle for access to such life-changing treatment was especially hard, she said.

"When we were young we played this game of 'how do you want to die', most kids did. But now, our mortality is looking at us in the face. It's one of the scariest things, and someone else is in charge."

It was not until Wall-Cade started her treatment she realised her battle was more than she bargained for, she said.

"It's then you understand that you are going to have to not only deal with a death sentence but you are going to have to fight. You are going to have to worry about the financial side of it, and the stress - cancer loves stress. Then you realise ... I've worked all my life and paid my taxes and never, ever been on the benefit and here I am now, in dire need of help from the Government and it's not forthcoming.

"I'm angry. I'm pissed off. I feel cheated."

Wall-Cade said she felt ashamed to be a Kiwi at times.

Both women were angered at a recent Pharmac decision to fund Ibrance as a "medium priority", on the condition the patient had not received hormonal therapy.

"That's the first thing the doctors put you on, as soon as you are diagnosed, you go straight on to hormonal therapy. So really, who's this going to help?" Wall-Cade said.

When these concerns were put to Pharmac, chief executive Sarah Fitt said the decision followed consultation with clinical advisors who she quoted as saying: "While this treatment looks promising, the evidence only showed modest benefits for patients and the price was prohibitively expensive".

Pharmac's primary clinical advisory committee - the Pharmacology and Therapeutics Advisory Committee - is expected to consider this assessment, and others, in February.

Fitt said Pharmac had a fixed budget "which means we have to make careful and considered decisions".

Research surrounding the effectiveness of Kadcyla was "both weak and of poor quality, and not directly relevant to New Zealand patients because the evidence did not assess the use of Kadcyla after treatment with pertuzumab (Perjeta)", she said.

Perjeta is another drug already funded for cancer patients and fewer than 100 New Zealanders with cancer have not been treated with it. Kadcyla had been recommended for funding with a medium priority for those people, Fitt said.

"We need to be absolutely sure that these medicines truly deliver the benefits that companies claim they do, and that we spend public money wisely. The flipside is considering funding a treatment with high uncertainty about its results, with the reality that it would take away funding from other more proven treatments."

Fitt reiterated Pharmac's stance that "New Zealand must make its own decisions, carefully assessing the available evidence and thinking about medicine use in the New Zealand health context".

Health Minister Dr David Clark said the Government had no active plans for an inquiry into Pharmac.

"However, I'm aware the Health Committee has received a petition calling for an inquiry and I'm sure they will be giving this due consideration."

While Kiwi cancer sufferers' desire for the latest cancer treatments was "understandable" but good evidence was needed to support the case for funding them.

He said the Government respected the independence and impartiality of Pharmac, which had demonstrated "it can and does act quickly to fund new drugs where the benefits are clear and significant".

Sue Wall-Cade is part of a group of women with advanced breast cancer hoping to get funding for the drug Ibrance. Photo / NZME
Sue Wall-Cade is part of a group of women with advanced breast cancer hoping to get funding for the drug Ibrance. Photo / NZME

Pharmac's budget is set each year as part of the Budget process, which last year allocated $985 million to the agency's drug-buying budget.

The agency was last reviewed, by itself, in 2013/14.

In 2010, a review of access to high costs and highly specialised medicines was held and in 2009, a Ministerial Review Group was set up to recommend how New Zealand might improve the quality and performance of the public health system.

In 2000, a review of Pharmac's operating policies and procedures was held at the request of the then Ministry of Health and Health Funding Authority.

For Barr-Smith and Wall-Cade, the political health journey has been exhausting and tumultuous but they push on, buoyed by hope and each other.

"If this doesn't benefit me in time, I only hope it will help the others after me. Because there will be others," Barr-Smith said.