Pharmac is being urged to change its funding criteria for a life-extending drug for women with incurable breast cancer.
The call comes after a new study showed the drug Perjeta - available only to Kiwi women who have not had previous chemotherapy - could have significant benefits for many more patients.
Women diagnosed with advanced (also known as incurable or metastatic) breast cancer have a 22 per cent chance of living longer than five years.
A drug called Perjeta could lengthen their life by 15 months or more - time they say they desperately want.
The drug was introduced in New Zealand in January last year after it was approved by Medsafe.
However, Pharmac ruled only women who have not received Herceptin or chemotherapy treatment previously were eligible for full funding.
That meant about 160 women were excluded from the treatment unless they paid for it themselves - at a cost of at least $130,000 per patient.
The issue hit headlines last month after Auckland detective Sarah Cato, 35, appealed for help to fund the drug so she could have more time with her wife, Keely, and 10-year-old daughter, Emma.
She has now raised $111,000 after sharing her story in the Herald and is still fundraising to cover the ongoing cost of the treatment.
Pharmac director of operations Lisa Williams said Perjeta was only registered by Medsafe for use in patients who had not received prior treatment with Herceptin or chemotherapy.
In February 2017 after pleas from advocacy groups including the NZ Breast Cancer Foundation and Breast Cancer Aotearoa Coalition, it sought "expert clinical advice" from its Pharmacology and Therapeutics Advisory Committee on whether other patients could use the drug.
"PTAC deferred making a recommendation, noting that the available evidence wasn't strong enough, or of a high enough quality, to support the use of pertuzumab [trade name Perjeta] for people who had already had treatment," said Williams.
But NZBCF chief executive Evangelia Henderson said a new trial presented at the American Society for Clinical Oncology conference in Chicago last week showed the combination of Herceptin and Perjeta considerably lengthened the life of some patients.
The Pherexa trial showed half of patients who added Perjeta to their existing Herceptin treatment for metastatic HER2+ breast cancer survived more than three years, compared with an average survival of just two years four months for those continuing on Herceptin alone.
Henderson said in light of the trial results, the NZBCF was preparing a written submission to Pharmac, incorporating the Pherexa trial results.
Williams said when the PTAC reviewed Perjeta in 2017 it took into account data from the Pherexa trial, presented to ASCO the year before.
The full trial results were only published this month.
"Pharmac is always open to reviewing new published evidence and reassessing funding criteria," Williams said.
"We would seek expert clinical advice from our Cancer Treatments Subcommittee to understand whether the evidence is robust, of good quality and supported the use of pertuzumab in previously treated HER-2 positive metastatic breast cancer patients."
She said any new evidence should be referred to the Cancer Treatments Subcommittee once available.
Williams also said Perjeta was not currently registered for use in New Zealand for previously treated HER2 positive metastatic breast cancer.
The NZBF argued that the Pherexa trial result was "significant" and "the best data there will be" around the use of Perjeta and Herceptin.
Henderson said the decision to "exclude" the 160 women diagnosed before Perjeta was introduced in New Zealand was "unfair".
"It's time to put right this dreadfully unjust situation, which left 160 patients who might benefit from Perjeta out in the cold, purely because they had the misfortune to be diagnosed with terminal cancer before January 2017," Henderson said.
"Eighteen months ago Pharmac put off its decision, saying it wanted more evidence.
"Today, that evidence exists, and we say it's time to offer Perjeta to all patients who might benefit."
Henderson said of the 160 women blocked from Perjeta, some had passed away and others had tried to raise money to pay for the drug themselves.
"When you have terminal cancer, the extended survival some people have achieved with this new drug means everything to patients and their families," she said.
"We're asking Pharmac to consider extending Perjeta to the remaining patients as matter of urgency, before more lives are lost."
To donate to Sarah Cato's Perjeta fund visit her Givealittle page by clicking here.
BREAST CANCER IN NZ
• It's the most common form of cancer to affect women
• The cause of the disease is not yet known
• There's no way to prevent breast cancer
• More than 2600 women and 20 men will be diagnosed each year
• More than 650 women die from the disease each year
• Kiwi women have a one in nine chance of developing breast cancer
• 90-95 per cent of women diagnosed have no family history of the disease
• Māori women have a 42.8 per cent higher incidence of breast cancer
• Pacific women are 54 per cent more likely to die of breast cancer than other women
WHAT IS METASTATIC BREAST CANCER?
When breast cancer spreads from the breast or armpit to other areas of the body, it is called advanced breast cancer. It's also called metastatic, secondary or Stage 4 breast cancer.
The most common places for breast cancer to spread to are the bones, lungs, liver and sometimes the brain. A secondary tumour in these distant organs is still comprised of breast cancer cells so it is readily identified as a secondary breast cancer rather than a new primary cancer.
Advanced breast cancer can occur months or years after a diagnosis of early or locally advanced breast cancer. Occasionally, it's diagnosed at the same time as the original breast cancer or, on rare occasions, before any tumour can be felt or even imaged in the breast.
(Source: Breast Cancer Foundation NZ)
BE BREAST AWARE - SAVE YOUR OWN LIFE
Changes in the breast that may indicate cancer include:
• A new lump or thickening
• A change in the breast shape or size
• Pain in the breast that is unusual
• Puckering or dimpling of the skin
• Any change in one nipple, such as: a turned-in (inverted) nipple or a discharge that occurs without squeezing
• A rash or reddening of the skin that appears only on the breast
To find out more about breast cancer including what to look for and how to self-check, visit: