Kiwis with advanced breast cancer are dying twice as fast as overseas patients, according to research from the Breast Cancer Foundation.
But new clinical guidelines are set to change that.
Annemarie Hope-Cross has been fighting advanced breast cancer for five years.
The response she initially got from her local district health board shocked her.
"It was merely a letter in the mail saying the gold standard of treatment is that you'll begin within six weeks, but sorry, we can't actually get you to even see anybody 'til at least eight weeks, though, time was of the essence."
So she took matters into her own hands with private medical insurance. Without it, she would not be here today.
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Her background as a first responder gave her the skills to do her own research and advocate for treatment.
But Breast Cancer Foundation chief executive Ah-Leen Rayner said that was not the case for many of the 400 patients diagnosed with advanced breast cancer each year.
"The average survival for Kiwi patients is 16 months compared to two or three years in countries like Australia, Germany or France.
"Kiwis seem to receive less treatments compared to other countries, one quarter receive no treatment at all and are often pushed to the back of the queue."
Advanced breast cancer, also called metastatic, secondary or stage four breast cancer is diagnosed after the cancer has spread to other parts of the patient's body.
New guidelines were first developed in late 2020 by a group of 20 breast cancer specialists from around the country, now they have been updated to improve things even further.
They aim to find the most effective high-level treatment tailored to individuals while also encouraging ongoing conversations between patients and their specialists.
Oncologist Marion Kuper-Hommel, the lead clinician behind the new framework, said New Zealand was lagging far behind other countries.
"So internationally there is a global breast cancer alliance, they have developed these guidelines they update them every three years, they're already up to the 6th version, but there was never a great buy in from New Zealand," Dr Kuper-Hommel said.
"New Zealand clinicians also probably didn't use them [the alliance's guidelines], so there is definitely room for improvement."
They had to raise the bar for patients, Dr Kuper-Hommel said.
Annemarie has pressed pause on her chemotherapy to give her body a break.
She has been given just months to live but is not giving up and is urging others to keep fighting.
"I've just got to try and prove that wrong, rattle cages, ask questions, don't wait for people to come to you, you go to them and say when is my treatment starting and then just keep chasing, don't be polite and wait for them to come to you."
The Breast Cancer Foundation said managing advanced breast cancer patients during the pandemic proved a challenge.
It hoped the new guidelines combined with new treatments would help some Kiwis to live longer after diagnosis.