Women with terminal breast cancer will be sharing their heartfelt stories with MPs about the dire struggles they face
while they wait and hope for important medicines to be funded.
The women will have their voices heard at two meetings of Parliament’s Health Select Committee (HSC) where they will
describe why they need the drugs and the impact of not having them on themselves and their families.
Breast Cancer Aotearoa Coalition (BCAC) chair Libby Burgess says: “The women will tell powerful, compelling stories
about why they desperately need access to the medicines that can extend lives and improve quality of life. It is
important for MPs to see and hear first-hand from real people who are personally, deeply affected,” Libby says.
The women were part of a march to Parliament in mid-October, where more than 100 women with advanced breast cancer, and
their supporters, presented petitions calling for the funding of two life-changing medicines. They also presented a
letter demanding a review of PHARMAC.
PHARMAC and the Ministry of Health will appear before the HSC, on February 13. They will respond to the petitions from
the women demanding the funding of the two medicines, which are described as game changers – Ibrance (palbociclib) and
Kadcyla (T-DM1 or trastuzumab emtansine). The women will appear before the committee on March 13 and 20.
“In the meantime, a number of women have died. This is a tragedy. More will die before decisions are made,” Libby says.
International expert in advanced breast cancer (ABC), Dr Fatima Cardoso, recently challenged New Zealand to do better in
treating the disease, noting that New Zealand is giving up too soon and that our median survival is much lower than that
of other countries. She stated: “In countries where drugs like these are available, metastatic patients (those with ABC)
can sometimes live eight, nine, 10 years. So this is unacceptable that a country like New Zealand has a one-year median
survival for these patients.”
Stories quoting Dr Cardoso:
Marcher, petition organiser and BCAC committee member Terre Nicholson says: “All the women were marching in the hope
that we will get the medicines we need soon, but we were also marching for women who will get breast cancer in the
“We appreciate having a say at the select committee but it will only mean something if there is actual change. We are
also aware that time is ticking and time is something we don’t have. We want these medicines to get the extra time they
offer for us to spend with our families, our children and in our communities.”
At the march, the petitions and the letter demanding a review of PHARMAC were received by 17 MPs, who met the marchers
on the steps of Parliament.
The medicines are currently being considered for funding but to date have only been recommended for a limited number of
women by a PHARMAC sub-committee, the Cancer Treatments Sub-committee of PTAC (CaTSoP).
Libby says: “We expect PHARMAC will say they are working through a process of considering the medicines for funding,
that the medicines have to promise real benefits before they are approved for funding and that PHARMAC has to get the
most from its limited budget.
“These are often weasel words to get around providing tangible solutions. We know that New Zealand’s spending on modern
medicines has consistently been last among 20 OECD countries. We believe PHARMAC should seek a significantly increased
budget from the Government rather than refusing to fund effective medicines then handing money back to the Government as
under-spend,” Libby says.
The women who organised the march and who are coordinating the presentations at the select committee are part of a group
called Metavivors NZ, who support each other and advocate for improvements in care and treatment for women with
metastatic breast cancer. Terminal cancer is also known as advanced, stage four or metastatic breast cancer. The Meta in Metavivors stands for metastatic and the vivors stands for survivors.
ABOUT THE MEDICINES:
Palbociclib (Ibrance) was recently recommended by the PHARMAC sub-committee CaTSoP for women with hormone receptor positive metastatic breast
cancer who haven’t already received a hormonal treatment such as tamoxifen or an aromatase inhibitor. This means that,
if recommended by the next PHARMAC committee then prioritised at a PHARMAC staff meeting and then finally approved by
PHARMAC’s Board, it will only be provided to those who are newly diagnosed. All those already on treatment who
petitioned Parliament for funding will be excluded.
T-DM1 (Kadcyla): The committee’s recommendation for T-DM1 (Kadcyla) also limits its use to an exclusive group of patients with metastatic
HER2 positive breast cancer. Women must have had prior treatment with trastuzumab (Herceptin) and a taxane to qualify,
but exclusions include those who have received pertuzumab (Perjeta) or have cancer deposits in the brain. As Perjeta has
been funded in New Zealand for newly diagnosed women since 1 January 2017 all women diagnosed over the last two years
will miss out, as will those who have been self-funding Perjeta. The committee noted that there would be a small number
of people in New Zealand (100 or less) who will not have been treated with Perjeta, and would therefore be eligible for