Breast Cancer Aotearoa Coalition (BCAC) stands with all people living with advanced breast cancer and their supporters who have advocated for changes in medicines funding and the health system. We also fully support those with other cancers and diseases who have been advocating for change. The voices raised have been from individuals, disease groups and through the newly formed broad coalition, Patient Voice Aotearoa (PVA).
We are disappointed at allegations in two recent Newsroom articles that Patient Voice Aotearoa is funded, organised, or influenced by ‘big pharma’. We are also saddened at suggestions that personal stories shared in the media by people desperately in need of medicines have been driven by any such influences. The people who choose to tell their personal stories are known to BCAC or other organisations in PVA. We understand the courage it takes to speak out publicly about your personal health. Many patients are approaching media to tell their stories not only for themselves but in the hope it will make things better for others.
Women with advanced breast cancer, Metavivors, marched on Parliament last October to present petitions for better funding for breast cancer medications. It was an initiative conceived entirely within the Metavivor group and they were supported by friends, family and people up and down the country. In May this year, eight groups including BCAC marched to Parliament to present more petitions, demanding proper funding of medicines.
“The insinuations made in the two recent Newsroom articles are insulting and without foundation or evidence. The use of Metavivors’ photos with the articles implied we are being driven by ‘big pharma’. It’s bad enough to have to fight for your life. Having your reputation impugned just adds to the stress that goes with a terminal diagnosis,” says Terre Nicholson, a BCAC committee member representing the Metavivors.
“We stand with the Metavivors and other brave New Zealanders living with cancer and other diseases who have shown the courage to share their stories with the media and before the Health Select Committee. The Newsroom articles were mean-spirited, lacked substance and targeted vulnerable people who simply want to be heard. They are a distraction from the real issue – the need to provide better health care and outcomes for New Zealanders,” says BCAC Chair Libby Burgess.
At the heart of this matter is the fact that we don’t have access to proven modern medicines that are recommended in international guidelines and funded across the developed world. New Zealanders with all types of diseases are suffering and dying early. New Zealand’s medicines budget is around a fifth of the OECD average – only Mexico spends less on pharmaceuticals per capita. This results in extreme rationing that harms our people. Collectively under the Patient Voice Aotearoa banner, we are trying to make people aware of this and change it for the good of all.
BCAC is a coalition of over 30 breast cancer groups that supports, informs and represents New Zealanders diagnosed with breast cancer. We are proud to collaborate with other disease groups under the PVA banner. BCAC would welcome the opportunity to work with the Government to develop a better approach to funding medicines.
22 August 2019
