How we help
The Breast Cancer Aotearoa Coalition provides a voice for New Zealand women who have experienced breast cancer. We strive to make world-class detection, treatment and care accessible to all those affected by breast cancer in Aotearoa, New Zealand.
We provide information, support and representation, empowering those with breast cancer to make informed choices about their treatment and care.
Our key aims are to:
- Inform: by providing evidence-based information for women and their families to help them make decisions about treatment and care
- Support: newly diagnosed women by giving them our Step by Step resource pack to help them through the early stages of diagnosis and beyond
- Represent: the views of women with breast cancer to decision-makers to ensure world-class treatment and care is available in New Zealand
- Promote: the practice of breast awareness and the free breast screening programme for 45 to 74-year-olds to ensure breast cancer is diagnosed and treated early
- Improve: breast cancer outcomes for Māoriand Pasifika women
- Network: to ensure communication and sharing of resources and information among New Zealand’s breast cancer-related groups.
You can read our 2018 Annual Report here.
Some of our recent work includes:
We have been liaising with, supporting, and are deeply impressed by all those who are currently pushing for better access to medicines for New Zealanders with advanced breast cancer, including our Metavivor members and their supporters, and member groups Sweet Louise and Breast Cancer Foundation NZ. Metavivor Wiki Mulholland and her husband Malcolm deserve special thanks for their persistence and willingness to take up the cause with the media and politicians. The fight is not over.
Deputy Chair Emma Crowley is fronting BCAC’s petition ‘Fund breast cancer drugs’ which asks for the Government to provide sufficient funding to PHARMAC to subsidise all of the drugs listed in the European ESMO guidelines for the treatment of advanced breast cancer. BCAC, the Breast Cancer Foundation NZ and oncologists belonging to the Breast Special Interest Group NZ have all written submissions supporting the petition. We expect to hear when the Health Select Committee will receive oral submissions soon.
The Māori Affairs Select Committee announced it would undertake an inquiry into Māori health inequities including PHARMAC, following Malcolm Mulholland’s letter to Parliament at the October 2018 march calling for an inquiry. HSC has declined to carry out such an inquiry.
In May we joined other health groups and many supporters to march to Parliament to present eight petitions including BCAC’s. The petitions demand proper funding of medicines for a range of diseases
BCAC chair Libby Burgess was appointed deputy chair, and advocate Malcolm Mulholland chair of health collective Patient Voice Aotearoa He Reo Tūroro o Aotearoa, bringing together a range of disease groups.
In May, we made a submission to the Health and Disability System Review.
On 13 and 20 March, Metavivors presented individually to the Health Select Committee following the march to Parliament and presentation of petitions in October last year. These were very moving stories of personal experience. You can listen to them here: 13 March and 20 March.
BCAC committee member Terre Maize, BCAC and Sweet Louise made submissions to the Health Select Committee on petitions for funding of Ibrance and Kadcyla, and responding to calls for a review of PHARMAC.
We made a submission to the Finance and Expenditure Committee on the Budget, calling for funding for a national cancer agency and increased cancer medicines funding.
In January 2019, BCAC members attended the Cancer Care at the Crossroads conference, where Dr Fatima Cardoso was a standout speaker, exposing NZ’s poor performance in cancer medicines and care and, challenging NZ to do better. The creator of a petition calling for a national cancer agency and plan, Blair Vining, spoke passionately at the conference.
In October 2018, Metavivors and supporters marched on Parliament to present petitions requesting funding for Ibrance (a petition from Terre Maize) and Kadcyla (a petition from Sue Wall-Cade). Malcolm Mulholland presented a request to the Health Select Committee that PHARMAC be subjected to external investigation. There was a great turnout from Metavivors, supporters, BCAC and others. Seventeen MPs were on the steps of Parliament to receive the petitions. The Health Select Committee (HSC) ‘opened a briefing’ to hear submissions and conduct hearings.
In late 2018 BCAC raised concerns about women from South Auckland having to travel to Auckland Hospital for chemotherapy. BCAC wrote to and met with the management of Counties Manukau and Auckland DHBs and received assurance that chemotherapy is now being delivered two days each week in South Auckland, with plans to deliver progressively more cancer services locally in the future. We are continuing to liaise with senior people at Auckland DHB and Counties Manukau DHB, to discuss this and the broader picture of providing better, more equitable breast cancer services to women in this region.
In September 2018, along with other breast cancer advocates, we spoke out in the media about the shocking results for women with breast cancer reported in a landmark Breast Cancer Foundation NZ report I’m Still Here. The report confirmed poor outcomes for NZ women from the sub-standard treatment and access to medicines we receive in this country compared to other countries.
Throughout the year, we attended cancer care conferences to remain up to date with the latest developments and provide a consumer voice. These included the San Antonio Breast Cancer Symposium, the Annual Scientific Meeting of Breast Cancer Trials (Australia and NZ) and the Asia-Pacific Oncology Stakeholders Forum.
We made a submission to the National Ethics Advisory Committee consultation.
In August 2018, BCAC made a submission to the Health Select Committee in favour of the immediate introduction of intraoperative radiotherapy (IORT) by Intrabeam to the public health system in New Zealand. IORT is a highly effective treatment option for New Zealand women in selected cases of early-stage breast cancer.
In July 2018, BCAC met with the Associate Minister of Health Hon. Julie Anne Genter, Labour’s Health and Wellbeing Caucus member Hon. Louisa Wall and National’s Health spokesperson Hon. Michael Woodhouse. The two key issues highlighted by BCAC in the talks were the need to improve access to medicines; and the need to address inequities for Māori and Pasifika women in breast cancer screening and treatment.
In July 2018, BCAC and Breast Cancer Foundation NZ made a strongly worded and evidence-based joint submission to PHARMAC requesting that funding for Perjeta (pertuzumab) be extended to all people with HER2-positive advanced breast cancer.
BCAC made a submission on PHARMAC's Consumer Voice consultation, where it sought input into how it could better incorporate the consumer voice into its work. In our submission we said PHARMAC must collaborate and partner with consumers/patients at every step of the decision making process, in place of the current very formal and closed PHARMAC structure. This would improve decisions leading to enhanced outcomes for all those involved including consumers, family, whānau, communities and PHARMAC.
You can view all our submissions here.
- Delivering a joint submission with the Breast Cancer Foundation NZ to PHARMAC early in 2017 requesting the funding of Perjeta include all those being treated with Herceptin (trastuzumab) for metastatic HER2 positive breast cancer. This request was not declined outright but PHARMAC stated they require more clinical trial evidence before extending the funding. Read the submission.
- Producing a brochure and poster to promote Metavivors NZ, a Facebook group for those with advanced breast cancer.
- Continuing to deliver Step by Step support packs to people with breast cancer throughout New Zealand.
- You can read our 2017 Annual Report here.
- Met with the Minister of Health and presented him with a briefing which made a case for increased medicines funding and outlined other areas of concern - read the briefing here.
- Make a submission to PHARMAC in November applauding their decision to fund pertuzumab for HER2+ metastatic breast cancer patients. However, there are some aspects of the proposed Special Authority criteria for access to pertuzumab that we have serious concerns about.
- Early in 2016 BCAC made a joint submission with the Breast Cancer Network Australia (BCNA) to the Royal Australian and New Zealand College of Radiologists to suggest that the Faculty amend its position that Intra-Operative Radiation Therapy (IORT) is not supported by sufficient evidence to form a view.
- Developed an email campaign asking the Minister of Health to provide better access to cancer medicines. More than 2800 letters were delivered to the Minister.
- Created a series of videos of women and men talking about their experiences living with advanced breast cancer. View the videos here.
- Committee members have participated in NZ Breast Cancer Special Interest Group meetings and the Australian New Zealand Breast Cancer Trials Group conference.
- Delivered Step by Step support packs free of charge to 1200 women newly diagnosed with breast cancer in New Zealand.
- You can read our 2016 Annual Report here.
You can read our 2015 Annual Report here.
- Delivered Step by Step support packs free of charge to 1400 women newly diagnosed with breast cancer in New Zealand.
- In March 2015, BCAC met with Minister of Health Jonathan Coleman, Associate Minister of Health Peter Dunne and Labour Health spokesperson, Annette King. We highlighted the need for improved access to breast cancer medicines, ensuring the Breast Cancer Standards are implemented, better access to clinical trials, the ability to review the safety and ethical status of clinical trials and the timely introduction of intra-operative radiotherapy.
- Delivered Step by Step support packs free of charge to more than 1300 women newly diagnosed with breast cancer in New Zealand.
Appealed to the Minister of Health when a NZ cancer treatment centre was found to be refusing publicly funded medicines to patients who were accessing additional medicines in the private sector. The Minister commented that the DHBs involved were failing to meet their legal requirements and promised to resolve the issue.
Appealed to the National Ethics Advisory Committee (NEAC) to establish effective mechanisms to review the safety and ethical status of clinical trials operating in New Zealand. BCAC also had input into a review of cross-sectoral ethics arrangements which is currently underway by NEAC.
Made submissions to PHARMAC to fund the breast cancer drugs Abraxane, Perjeta and Kadcyla.
Worked with Sovereign Insurance to improve policy conditions for women receiving breast reconstructions.
Lobbied the National Health Committee and the Royal Australian and NZ College of Radiologists to bring the Intrabeam radiotherapy technology into the pubic health system in New Zealand.
Submitted information to be included in the Ministry of Health Cancer Information Strategy document.
- Participated in NZ Breast Cancer Special Interest Group meetings, the Australian New Zealand Breast Cancer Trials Group conference and the C4YW International Conference for Young Women with breast cancer. Attended and sponsored Shocking Pink to attend BCNA’s breast cancer science and advocacy training course in Melbourne.
- You can read our 2014 Annual Report here.
- Delivered the Step by Step support and information pack free-of-charge to more than 1000 New Zealand women newly diagnosed with breast cancer
- Reviewed and edited Step by Step content following consultation with medical professionals, BCAC member groups and others in the breast cancer sector with a view to printing a further 5,000 copies of this valuable resource
- Provided up-to-date information on breast cancer diagnosis, treatment and recovery, along with the latest research results and news on the BCAC web-site and Facebook page
- Participated in web videos produced by Medicines New Zealand to further the understanding of medicines funding and patient support
- Appealed to the Health and Disability Ethic’s Committee (Northern B) for a review of the SOLD clinical trial on the grounds that it puts New Zealand women with breast cancer involved at unnecessary risk
- Worked on behalf of women with breast cancer who experienced trouble negotiating the health system to ensure their needs were met and that they received appropriate treatment.
- Supported and facilitated the establishment of an advocacy group for New Zealand women with metastatic breast cancer
- Established links with an Australian Triple Negative Breast Cancer (TNBC)support group in order to help better inform New Zealand women
- Pushed for an expansion of the upper age limit for BreastScreen Aotearoa’s free screening programme from 69 to 75, as has occurred in Australia
- Promoted the registration of two new breast cancer drugs, Perjeta® (Pertuzumab) and Kadcyla® (ado-trastuzumab emtansine) and provided in-formation on access programmes for both medicines
- Supported the introduction of the Intrabeam technology to New Zealand, a one-dose radiation treatment for women with breast cancer
- Participated in the San Antonio Breast Cancer Symposium; the NZ Breast Cancer Special Interest Group meetings; the Australian New Zealand Breast Cancer Trials Group conference; and the C4YW International Conference for Young Women with breast cancer
- You can read BCAC's 2013 Annual Report here.
- Distributed Step by Step support and information packs to more than 1400 New Zealand women newly diagnosed with breast cancer.
- Carried out a survey of Step by Step users which showed that the resource was extremely well recieved. Women described it as helpful, informative and practical.
- BCAC chairperson Libby Burgess participated as a consumer/patient representative on the National Breast Cancer Tumour Stream Working Group to develop high-quality standards of care for breast cancer in New Zealand
- Advocated for changes to PHARMAC’s operating policies and procedures in order to see more transparent decision making around medicines funding.
- Made submissions to PHARMAC on the need to introduce the breast cancer drug lapatinib (Tykerb) as a second-line treatment for women with advanced HER2 Positive breast cancer
- You can read BCAC's 2012 Annual Report here
- Producing a series of web videos, Kiwi Stories of Breast Cancer, of men and women talking about their experiences of a breast cancer diasgnosis, treatment, care and life afterwards, and how they have coped with this challenging journey.
- Creating and developing a new website to provide a comprehensive resource supplying detailed information about all aspects of breast cancer and the supports that are available.
- Briefing the Minister of Health, Hon Tony Ryall, on issues faced by women with breast cancer, including the need for timely cancer treatment particularly chemotherapy and surgery; the shortage of medical oncologists to provide effective treatment for New Zealand cancer patients; and the need to regionally extend and fund the New Zealand Breast Cancer Registers to capture detailed data about breast cancer.
- BCAC Committee member, Libby Burgess, was appointed as a Member of the New Zealand Order of Merit (MNZM) for services to women’s health in the New Year’s Honours.
- You can read BCAC's 2011 Annual Report here.
- Distributing Step by Step support packs to women newly diagnosed with breast cancer.
- Briefing the Minister of Health, Hon Tony Ryall, on issues faced by women with breast cancer, including long waiting times for chemotherapy and radiotherapy treatment; inconsistencies in provision and care around the country; and increasing and retaining a high quality cancer workforce.
- Meeting with the country's medicine's regulator, Medsafe, to clarify issues surrounding the bioequivalence of generic medicines.
- Supporting the establishment of breast cancer support group, Wahine Toa, to specifically address the needs of Māori women diagnosed with breast cancer.
- Participation in the Breast Cancer Special Interest Group (BCSIG) of the NZ Association of Cancer Specialists as consumer representatives.
- Making submissions to PHARMAC asking the medicines funder to extend access to the taxane docetaxel, and lapatinib, a targeted therapy for HER2 positive breast cancer.
- Attendance at numerous conferences to extend knowledge of breast cancer treatment and care in order to advocate more effectively for world-class services in New Zealand.
- Responding to consultations, to the ministerially appointed High Cost Medicines Panel and to PHARMAC on its Exceptional Circumstances funding.
- BCAC Committee member, Dr Chris Walsh, was appointed as a Member of the New Zealand Order of Merit (MNZM) for services to women’s health in the New Year’s Honours.
- Publishing more than 2500 Step by Step support packs and distributing them to women newly diagnosed with breast cancer.
- Assisting with the creation of clinical guidelines for the management of early breast cancer to ensure all women in New Zealand get the very best treatment no matter where they live.
- Meeting with the Health Minister, Hon Tony Ryall, to highlight the need for better breast cancer treatment and care.
- Making a submission to PHARMAC to improve its consumer and consultation representation.
- Helping to recruit women for various breast cancer clinical trials and research projects.
- Driving the Herceptin campaign which resulted in the Government funding a year-long treatment programme of the drug for women with HER2 Positive breast cancer.
- Supporting the Herceptin Heroes as they undertook a Judicial Review to get Pharmac to fund a 12-month programme of Herceptin.
- Making submissions to Glaxo SmithKline, Pharmac and the Government to make Lapatinip (Tykerb) available in New Zealand.
- Working to ensure delayed breast reconstruction is available in a timely manner throughout the country.
|BCAC Annual Report 2011 FINAL.pdf||298.47 KB|
|BCAC 2012 Annual Report FINAL.pdf||5.45 MB|
|Annual Report 2013 FINAL FINAL.pdf||9.24 MB|
|BCAC 2014 Annual Report.pdf||2.51 MB|
|BCAC Annual Report 2015 FINAL.pdf||10.69 MB|
|BCAC Annual Report 2016 FINAL 2.pdf||11.59 MB|
|BCAC - Annual report 2017 LOWRES.pdf||1.92 MB|
|BCAC - Annual report 2018-LR.pdf||8.76 MB|