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Celebrating Strength & Beauty

Gifts to the Future, He Koha ā Mua Legacy Project

The Breast Cancer Aotearoa Coalition (BCAC) in partnership with Sweet Louise, Breast Cancer Foundation NZ and Metavivors NZ has launched the Gifts to the Future, He Koha ā Mua Legacy Project to enable a number of New Zealanders with advanced breast cancer to create video legacies recording moments, memories, messages and insights they would like to share.

It’s hoped these video legacies will help the women involved pass on their stories, for their immediate family – partners, children, grandchildren and beyond - and help others who will face a similar diagnosis. The videos will be shared on the BCAC website with links from both Sweet Louise and Breast Cancer Foundation NZ.

BCAC Chair, Libby Burgess explains: ‘This October, Breast Cancer Awareness Month, we are raising awareness of advanced breast cancer and highlighting the sad truth that around 1,000 New Zealanders are living with incurable breast cancer. The Gifts to the Future, He Koha ā Mua Legacy Project is a way to honour the women and men with advanced breast cancer and to help celebrate the strength and beauty of those who will not survive their diagnosis.

‘Raising awareness of breast cancer is crucial, and with early detection and effective treatments, most of the 3300 New Zealanders who are diagnosed each year will survive. But for some, the cancer has advanced and they are faced with the prospect of ongoing treatments and a shortened life expectancy. Their needs are different from those with early breast cancer and for a long time their voices were not heard. Now we have Metavivors NZ, an online peer support group hosted by BCAC, Sweet Louise, a charity focused entirely on supporting those with advanced breast cancer, and Breast Cancer Foundation has published hugely important research on advanced breast cancer in New Zealand.’

The coordinated efforts of these groups and particularly the Metavivors themselves have already resulted in real change. There is now an active communication network among those with advanced breast cancer, offering peer support from those who truly understand, a wealth of information and connection to support services that make a difference – from vouchers for home help and hairdressing, to access to clinicians for advice.

The introduction of new medicines and the patient-led campaign for more PHARMAC funding has inspired new conversations about advanced breast cancer and encouraged groups to work together in support of their members and to raise wider awareness.

Libby adds: ‘The Gifts to the Future, He Koha ā Mua Legacy Project is about acknowledging the distinct needs of those people who have the advanced, incurable form of breast cancer who have felt hidden away and ignored. One of our key roles is to speak up on behalf of patients, and we work closely in liaison with them. Our BCAC committee of women who have experienced breast cancer, several of whom have advanced disease, understand exactly what is involved. We want women and their families to know they are not alone.’

BCAC is an active member of Patient Voice Aotearoa, a coalition of groups representing a range of diseases. PVA is currently gathering signatures for a petition calling for doubling then tripling NZ’s medicines budget.

‘Everyone in New Zealand is affected by disease, either themselves or family members or friends. We all want the best care for people in need and it should be a right as a New Zealander to receive access to the medicines you need.’ Libby says she encourages everyone to sign and support the PVA petition at www.sign4life.nz

The Legacy Project is supported by an educational grant from Pfizer NZ.

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