The Breast Cancer Aotearoa Coalition (BCAC) recently helped to set up a ‘Metavivors’ group in order to advocate for better treatment and care for women with advanced breast cancer.
BCAC chair, Libby Burgess, says women with secondary breast cancer have specific needs and all too often these are ignored or not prioritised.
“The aim of the Metavivors NZ group is to provide a voice for women with advanced breast cancer in New Zealand in order to raise awareness of their specific needs and to advocate for medicines, treatment options and support to benefit them,” Libby says.
“If we don’t identify and explain the need for better treatment and care for this particular group, then women will suffer through a poorer quality of life and ultimately a shorter life. It’s vital that women with advanced disease get the best treatment possible.”
The term ‘metavivor’ refers to women who are living and thriving with secondary breast cancer and recognises that many women can live for years with metastatic cancer.
There is a strong ‘metavivor’ movement in the United States where women with secondary breast cancer are extremely vocal about the need for research into advanced breast cancer.
One of the inaugural Metavivors NZ members is Anna Southern. She has had four recurrences of breast cancer since first being diagnosed seven years ago. The breast cancer has now metastasised to her bones and lungs.
Anna says there are many fabulous groups available to help those with breast cancer, but she was drawn to Metavivors NZ, in part to help improve the lives of others with secondary breast cancer.
“Sweet Louise provides a wonderful service for those like me, living long term with cancer, but I recognised that there is a space to advocate for the needs of people in my situation. My particular focus is more on the natural health management of breast cancer, as a compliment to medical treatment. I really just want to add my voice in the hope that my experience can help someone else have a more positive future,” Anna says.
One of the first issues the Metavivors NZ group is concerned with is to try and secure public funding for the chemotherapy drug, Abraxane (Nab-Paclitaxel). This medicine is often used for women with advanced breast cancer, but because it is not publicly funded New Zealand patients need to pay for it.
One of those is Larissa Garnett, a Wellington woman who has advanced breast cancer. “I really believe PHARMAC should subsidise Abraxane because it has so many benefits for patients. It’s less toxic than similar drugs, docetxel and paclitaxel, due to the carrier agent used and takes less time to administer with fewer side effects,” Larissa says.
Larissa’s tumours shrunk by around 30 per cent on Abraxane and she wants other women to be able to benefit from the medicine. She worries that many women will miss out because they cannot afford to pay for it.
BCAC is also strongly advocating for Abraxane to be fully funded. A group of New Zealand physicians working in the area of breast cancer, the Breast Cancer Special Interest Group (BCSIG) has also written to PHARMAC asking it to consider fully funding Abraxane.
The Metavivors NZ group welcomes new members. If you’d like to join please contact BCAC and we’ll put you in touch.
Click here for more information on secondary breast cancer and if you’re interested in the Metavivors movement in the United States you might like to check out www.metavivor.org
