Raising voices for positive change: Metavivors NZ advocacy

A powerful group united for better treatment and medicines access

Metavivors NZ is a private Facebook group where women with advanced breast cancer communicate with each other about how they are doing, and share comfort and information.

As well as being a tremendous source of support, friendship and strength for each other, some members of Metavivors NZ have also found that they share a common interest in raising public awareness of the specific needs of women with advanced breast cancer and advocating for better medicines, treatment options and support.

Metavivors NZ - Action is a second private Facebook group that BCAC has set up especially for Metavivors who are interested in active advocacy, and for their friends, family and supporters who want to help.

Metavivors NZ members and their supporters have joined together recently to raise their voices more loudly and collectively than before, demanding improvements from the health system for women with advanced breast cancer.

News stories have appeared throughout the country with women telling their personal stories. They are describing the effects of the disease on themselves, their families and their communities, and are explaining why they so desperately need medicines that aren’t funded in New Zealand. The feedback has been huge with support throughout the country.

The women have been shining a light on the fact that NZ has among the worst access to new medicines in the world. Many organisations are supporting their calls for better treatment, care and access to medicines. This includes Breast Cancer Aotearoa Coalition (BCAC), the Breast Cancer Foundation NZ, Sweet Louise, the Cancer Society, oncologists and others.

This active and coordinated approach to calling for change for advanced breast cancer medicines is growing in traction and awareness in 2019.

First march to Parliament:

A powerful march was held in mid-October 2018 when more than 100 Metavivors and their supporters from all over the country marched to Parliament demanding better access to medicines. They presented petitions for two specific medicines hailed as game changers for women with advanced breast cancer – Ibrance and Kadcyla.

A letter demanding a review of PHARMAC was also presented. Seventeen MPs gathered on the steps of Parliament to receive the petitions and letter, and listen to what the Metavivors and their supporters had to say.

The march organisers were Metavivor Wiki Mulholland and her husband Malcolm Mulholland, with support from many others. The letter calling for a review of PHARMAC was written and presented by Malcolm and again supported by many others.

One petition was organised by Metavivor Terre Nicholson and called for the funding of Ibrance (palbociclib). The other petition was organised by Sue Wall-Cade and called for the funding of Kadcyla (trastuzumab emtansine).

A result of the march and petitions is that Parliament’s Health Select Committee is currently gathering evidence, listening to the petitioners and other Metavivors, and hearing from PHARMAC, the Ministry of Health and others with a view to making recommendations on possible ways forward. Metavivor activists have not been impressed with the lack of progress to date.

Second march to Parliament:

On 7 May 2019 Metavivors, Breast Cancer Aotearoa Coalition (BCAC) and other breast cancer supporters joined other health advocacy groups and individuals to march to Parliament to present strongly worded petitions to Parliament demanding proper funding of medicines.

In total, eight petitions were formally presented to MPs, asking that 26 drugs be funded for six diseases. The health groups are Breast Cancer Aotearoa Coalition, Lung Foundation New Zealand, Ovarian Cancer New Zealand, Myeloma New Zealand, Pompe New Zealand and Chronic Lymphocytic Leukaemia Advocates New Zealand.

“Collectively, we’re giving Parliament, the Government and PHARMAC the strong message that there needs to be significant change – and it must happen now,” BCAC chair Libby says.

Breast Cancer Aotearoa Coalition petition

A petition from BCAC was presented at this march on 7 May 2019, in the name of BCAC deputy chair Emma Crowley. The petition calls for the House of Representatives to urge the Minister of Health to provide sufficient funding to PHARMAC to subsidise all of the drugs listed in the European ESO-ESMO ABC Guidelines for the treatment of advanced breast cancer.

 

 See BCAC's petition here

See Emma Crowley's speech to MPs here

Read more about the march and petitions:

First march to Parliament:

18 Oct 2018:  Metavivors march on Parliament

Health Select Committee hearings:

4 December 2018: Terre Maize, Wiki Mulholland, Malcolm Mulholland

10 Dec 2018: Health Select Committee gathering information on drug funding

13 March 2019: A range of Metavivors presented

20 March 2019: Another group of Metavivors presented

29 May 2019: Clinical Leader in Medical Oncology from Capital and Coast District Health Board, Anne O' Donnell (a member of PHARMAC's Cancer Treatments Subcommittee (CaTSoP)

 Second march to Parliament:

30 April 2019: Health groups marching to Parliament to present multiple petitions

3 May 2019: Health groups urge NZers to sign petitions by 6 May

7 May 2019: The unacceptable death toll behind march to Parliament

 

Page updated: 7 May 2019