For Maggie Ngatai, the highlight of her birthday this week was getting out of bed at 6pm and sitting at the table for a bowl of rice.
She had been bedridden for days following her latest round of chemotherapy.
But she was grateful to celebrate another birthday.
"Forty-five and alive," she told Newshub from her Auckland home.
The mother of two young daughters has advanced breast cancer which has spread to other parts of her body including lesions on her brain.
"I was first diagnosed with breast cancer in August 2020. It was in the middle of COVID lockdown. It was the day before my youngest daughter's fourth birthday. I was diagnosed with quite a serious form of breast cancer," Ngatai said.
It was in fact HER2-positive breast cancer which is typically more aggressive and can grow and spread at a faster rate.
"The doctors and nurses, you could just tell by the looks on their faces that it was serious. And they said something like 'normally we wouldn't go into details around a diagnosis but we know what we're seeing'," Ngatai told Newshub.
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Ngatai, who spent 22 years working in customer service, said she had surgery, 15 rounds of radiation and a year's worth of chemotherapy to try and beat the cancer.
She said she then went into remission.
"One year later, a lump came up in my neck and unfortunately that was the first that we knew that the cancer had spread. Then last year I started, having localised seizures - that was when the medical team identified the spread into the brain."
Ngatai's mobility has now been impacted and she's moved in with her mother to help with her care.
Her doctors have recommended a new generation drug called Trastuzumab deruxtecan or T-DXd that's not funded here.
It is funded in many other countries including Australia.
Ngatai told Newshub she believes the drug would cost her more than $170,000 for the first year of treatment and she's now fundraising to try and buy it.
"I want to do everything I can to extend my life for my children at age seven and 11. I would like to see them into adulthood. My understanding is that without this (drug) there are unlikely to be other effective options."
Pharmac said Trastuzumab deruxtecan is on its "options for investment list" which means they would like to fund it if they had the money.
"The evidence of the benefit of Trastuzumab deruxtecan is based on international clinical trials, which will have been a part of the decision to fund treatment in Australia, and likewise will be part of the consideration by Pharmac clinical advisors and other staff," said David Hughes, Pharmac's director advice and assessment and chief medical officer.
"However, it is also important that we assess whether that evidence is applicable in New Zealand, to ensure we make good decisions within our fixed budget and for our specific population."
Breast cancer medical oncologist Dr Sheridan Wilson described Trastuzumab deruxtecan (T-DXd) as a "game-changer" for HER2-positive breast cancer.
"So someone has had a diagnosis of advanced breast cancer - which is incurable, they've received some treatment and then they need to move on to the next line of treatment and that's where this drug fits," Dr Wilson said.
"What we know is that if you use Trastuzumab deruxtecan in the second line treatment it extends the time to the cancer progressing four-fold compared to the type of drug that we would use in New Zealand at the moment. It also improves survival so women live longer with their cancer if they receive this drug as part of their care.
"It's state-of-the-art treatment and it's been built into all the international guidelines already. That's why people are asking about it at the moment. How well this drug works is special," she added.
Dr Wilson said doctors here would be giving it to all the women who were eligible if it were funded.
"With HER2-positive breast cancer, you'd get this drug in Australia. I think it's reimbursed in more than 30 countries around the world and it's not always rich countries either," Dr Wilson told Newshub.
"Maggie's situation is just heart-breaking - no New Zealander should have to fundraise for a treatment that can give them more time with their whānau, especially one that Pharmac has already assessed to be necessary to live or live well," said Breast Cancer Foundation NZ CEO Ah-Leen Rayner.
"We believe advanced breast cancer can be a chronic condition women live with rather than die from, similar to HIV and diabetes. But for that to happen, we need the cutting-edge drugs that are coming through to be equitably available to all who need them.
"It was disappointing the Government didn't fund new cancer drugs in this week's Budget. Without a significant boost for new medicines, Kiwis like Maggie will continue to be denied access to the treatments they desperately need," Rayner added.
The Breast Cancer Foundation said it will continue to put pressure on the government to fund cutting edge drugs.
"We are so gutted for the people who are in this situation. We are asking and will continue to ask and push for treatment for women in New Zealand that is world-class and that is in fact the basic standard of care. That's what we want and that's what we will fight for," said Breast Cancer Foundation NZ research manager Adele Gautier.
"We're treating mothers who have a young family. We're looking after women who have to redesign their work arrangements. So the diagnosis of incurable breast cancer has a ripple effect throughout a family and throughout a community," said Dr Wilson.
"What we're wanting to do when we treat advanced breast cancer is delay the time to progression, control the symptoms and extend life."
Dr Wilson said having to explain to someone that they have incurable breast cancer - which will ultimately take their life, is devastating.
But she said the conversation can quickly get worse.
"It gets a whole lot harder when you then have to admit that outcomes in New Zealand are not so good and the drugs I have to offer look a bit different from what they would get overseas. It's not good enough," said Dr Wilson.
Ngatai is reflective on what life was like before breast cancer.
"I had a fantastic career. I was with a large organisation for the last 22 years and just you know was a working mother enjoying all the things that come with that. Since then unfortunately year on year there has been deterioration. So life is very different now."
The best way Ngatai says she can cope with her diagnosis is taking it one day at a time, but at the same time she's very aware of the risk that goes without having this new recommended treatment.
"It's scary," Ngatai said.
"It should be accessible to all of us and not just those who have the money."
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