Breast cancer sufferers have been dealt a blow in their mission to have life-extending drugs funded by the Government.
Women stood on the steps of Parliament in October to present petitions to MPs calling for two important breast cancer medicines to be funded by Pharmac.
But lobbyists feel let down by the response given by the Government's drug-buying agency.
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Pharmac has recommended funding for some of the drugs, but they won't be available for everyone, with some advanced breast cancer sufferers not qualifying because they're already receiving other treatments.
The October protest, led by over 100 breast cancer sufferers representing the group Metavivors, called for funding and access for Ibrance and Kadcyla - life-extending drugs in the fight against advanced breast cancer.
The medicine costs only AU$40 a month across the Tasman, but more than $6000 in New Zealand.
The Pharmac clinical committee that considers applications for drug funding, has given a mixed bag of recommendations.
Ibrance (chemical name palbociclib), for example, is used to treat advanced breast cancer. It has been recommended for funding by Pharmac, but only for breast cancer sufferers who haven't already received hormonal treatment.
This means that, if recommended and finally approved by Pharmac's Board, it will only be provided to those who are newly diagnosed. And all those already on treatment who petitioned Parliament for funding will be excluded.
"Exclusion of those already being treated for this form of breast cancer is cruel and heartless," says Breast Cancer Aotearoa Coalition (BCAC) chairperson Libby Burgess.
"There certainly is evidence that this group would benefit, which is the reason oncologists are recommending the treatment. Women who can afford it are accessing Ibrance while most go without."
It's understood Pharmac wants more advice from its clinical experts. But the agency isn't bound by any timeframe, and lobbyists fear it could take months or years to consider changes.
Similar restrictions have been recommended for T-DM1 (Kadcyla), according to BCAC.
The drug won't be given to women who have received the drug Perjeta, which has been funded in New Zealand for newly diagnosed women since January 2017. That means all women diagnosed over the last two years will miss out, as will those who have been self-funding Perjeta.
Cancer sufferer Wiki Mulholland has called for an independent inquiry into Pharmac and the Health Select Committee (HSC) has heard her case. The HSC opened a briefing, requesting input from Pharmac and the Ministry of Health.
It has now invited submissions from Metavivors on the impact of unfunded medicines on their lives and those of their families, and these will be heard in February.
"It's great that Metavivors will have their day in front of the HSC, but for each of them time is precious," says Ms Burgess.
"As the months tick by with effective medicines held out of reach, these women know their time is running out."
Ms Mulholland appeared on The AM Show in August to share her story. She was diagnosed with breast cancer in May, and it quickly spread to her spine, sternum and skull.
Her partner Malcolm set up a Givealittle crowdfunding page, which has since risen over $58,000 to fund her $77,000 11-month Ibrance treatment.
The couple say Pharmac is too slow in its decision process of whether to fund the treatment, hence their call for an inquiry into how it operates.
The mother-of-three says the evidence is the drug Ibrance will give her nearly two years of "wellness", which she wants to spend cheering on kids on the sports field.
Around 3000 women are diagnosed with breast cancer every year in New Zealand. Ms Mulholland was only 40 when she got her diagnosis.