Kaitaia mother of three Donna MacMillan knows she is dying, but she's not going without a fight.

Her battle is not only against breast cancer though. She's also taking on Pharmac, which does not subsidise the drug that would give her a little more time with her family.

So she and her husband Ewan (they've been together since they were teenagers) are each working two jobs to pay almost $6000 a month.

The drug she needs does not come cheap.
The drug she needs does not come cheap.

"It's running us ragged," Mrs MacMillan said.


"It's just not fair. We've both worked hard all our lives. Now we're stressing. It's a vicious cycle. It's not good for me to be worried all the time, but if we don't do it we can't the afford the medication that's keeping me alive."

"I feel worthless. I feel as if the government doesn't care whether I live or die. That I don't matter. That my family doesn't matter."

She is now on her second cycle of Ibrance, which inhibits the spread of the disease, and which, along with a couple of other drugs that Pharmac does not subsidise, is widely used in other countries for stage four hormone receptor-positive cancer. It is seen internationally as a game-changer, because it extends median life expectancy by 18 months to two years.

"Greece has no money as a country, and its government pays for women with Stage 4 breast cancer to have these drugs," she said.

"Pharmac is a 25-year-old system, and it doesn't work any more."

Mrs MacMillan knows the cancer will win, and other drugs are enabling her to deal with the pain, but the extra two years Ibrance could give her with her children and grandchildren — "that's a lifetime.

"I feel worthless. I feel as if the government doesn't care whether I live or die. That I don't matter. That my family doesn't matter," she added.

And she knows very well what is happening to her, describing the metastatic spread into her cranial vault, neck, shoulder, ribs, hips and pelvis, a voracious invader she only discovered had returned in May.

Now 45, she was first diagnosed with breast cancer in 2011. There is no family history of the disease. There was no warning. One day, out of the blue, she felt a lump.


After a double mastectomy she had 25 sessions of radiation — in Auckland, for five weeks on her own, then chemo (in Whangarei) and drug treatment, including injecting herself with a hormone suppressor every 28th day for the last seven years.

Seven years in remission, then on May 15 she had a scan and found that the cancer had moved to her bones.

The couple have been able to afford two months of Ibrance so far, at $5865 a month. As well as both increasing their workloads, they've opened a givealittle page — givealittle.co.nz/cause/donna-needs-your-help — for the next script. As of last week the page had raised $4505.

"Insurance pays out when someone has only 12 months to live. Who can say how long I've got? This drug, if I can afford it, could keep me alive longer than that. Or, without it, I might have a few months. Who knows?" she said.

"We're looking at remortgaging our house, but that idea scares me. When I do go, I want to know that Ewan is cared for, and our kids. I want them to have what we worked so hard to get.

"And there's the bucket list. Mine is wanting to go to Alaska and see the Northern Lights. I've wanted to do that for as long as I can remember. The other thing on my list is to take the whole family, all of us, on a cruise."

And there is anger and frustration, that victims of an accident of health don't get the support victims of accidents do.

To fund her optimum two years of life with a drug like Ibrance, or another called Kadcyla, would cost Pharmac around $140,000, similar, she said, to treating many illnesses over the same period.

Her plea to Pharmac to pay for the drug that would give her more time with her family was echoed by hundreds of women and their loved ones.

Mrs MacMillan was a strong supporter of the petition that women with breast cancer, their families, whanau and supporters took to Parliament last month, calling for the funding of Ibrance and Kadcyla. The Ibrance petition had around 30,000 signatures, the Kadcyla petition more than 1500.

This year, about 300 New Zealand women and a handful of men will be told they have incurable advanced breast cancer (ABC), also called secondary, Stage 4 or metastatic breast cancer. Each year a similar number die.

Pfizer New Zealand has introduced a Patient Assistance Programme to reduce the cost of Ibrance for eligible patients, while Pharmac considers the company's application for funding. Pfizer NZ applied for Ibrance to be funded in February, but Pharmac has not yet made a decision.

Patients who meet the eligibility criteria, and have already purchased eight packs of Ibrance from a pharmacy, can get the next four packs free.

The Breast Cancer Foundation urges anyone who is currently taking the drug to talk to their oncologist to find out more about eligibility.

Meanwhile the Breast Cancer Foundation says the struggle of Stage 4 patients takes place out of the spotlight that celebrates the "success stories" of early breast cancer survival.

The report, 'I'm still here,' says New Zealanders with ABC die faster than people in other countries, that many of them receive less treatment, and that the health system disadvantages them in many ways.

Many with advanced Stage 4 felt unseen, forgotten and isolated, as if the health system has turned its back on them. Donna MacMillan knows the feeling.