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:

https://www.stuff.co.nz/national/health/110259840/were-giving-up-too-soon-advanced-breast-cancer-expert-calls-for-attitude-change-in-nz

https://www.tvnz.co.nz/one-news/new-zealand/world-leading-breast-cancer-expert-calls-pharmac-make-two-new-drugs-more-affordable?variant=tb_v_3&variant=tb_h

https://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=12201210

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 future.

“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.

PHARMAC DECISION-MAKING

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 Kadcyla.

For more information about the medicines, go to: https://www.breastcancer.org.nz/content/women-who-petitioned-parliament-get-nothing-pharmac-s-santa

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