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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.
Women who stood on the steps of Parliament in October to present petitions to MPs calling for the funding of two important breast cancer medicines have been given a setback by PHARMAC for Christmas.
The petitions called for funding for Ibrance and Kadcyla, and were presented after a march to Parliament by more than 100 women representing Metavivors, a group of women with advanced breast cancer seeking access to vital medicines, and their supporters.
Metavivors have a tremendous opportunity to tell politicians about your experience with breast cancer and your needs.
Parliament’s Health Select Committee is asking to hear from Metavivors to help the committee consider petitions for the medicines Ibrance and Kadycla and a letter calling for a review of PHARMAC.
The petitions and letter were presented to MPs in the Metavivors march to Parliament in October, and the committee is looking at the requests.
The committee has told Ibrance petition organiser Terre Nicholson that anyone can choose to make a written or recorded video submission to the committee. Other options are appearing in person or via videoconference.
Parliament’s Health Select Committee has announced that it has “opened a briefing” on PHARMAC funding and patient access to drugs. The committee says this will allow it to gather information on the wider issue of drug funding, and decide on any further steps.
The announcement follows the presentation by Metavivors Wiki Mulholland and Terre Nicholson of petitions to Parliament calling for funding of two medicines for advanced breast cancer, Ibrance and Kadcyla, and also the presentation by Wiki’s husband Malcolm Mulholland of a formal letter calling for an independent review of PHARMAC.
We had a fabulous opportunity to look back at everything we have achieved this year at our AGM in Auckland recently. A wonderful group of women came together from different parts of the country to share their perspectives and discuss the opportunities ahead.
Our chairperson Libby Burgess gave an update on all that has been achieved by BCAC this year – and it’s a lot. Work has included seeking funding for new medicines, making applications for medicines, meeting decision makers to push for positive change and working to finalise a new 4th edition of BCAC’s Step by Step support pack.
Medicines applications
Three people who are fighting to have important medicines funded for women with advanced breast cancer appeared before Parliament’s Health Select Committee hearing on 4 December to strongly put their case.
Terre Nicholson, Wiki Malton Mulholland and Malcolm Mulholland were all leaders in a march to Parliament in October, and did a magnificent job on 4 December explaining the urgent need for action. A number of Metavivors attended the hearing in support while others watched online.
To see media coverage of the hearing, and watch the hearing itself, see links at the end of this article.
It was amazing to see so many wonderful, inspiring women march to Parliament recently to present petitions calling for funding of important medicines for advanced breast cancer. The women were joined by their whānau, family, friends and supporters on 16 October, carrying banners with strong messages and sharing powerful stories.
Breast Cancer Aotearoa Coalition chairwoman Libby Burgess says: “It was such an amazing turnout of women from all over New Zealand who need these vital medicines. These passionate and inspiring Metavivors were there representing not only themselves but many other women, including some who had already passed away and some who were too unwell to attend the event.”
Breast Cancer Aotearoa Coalition media release, 16 October 2018
Women marching to Parliament today, to present two petitions calling for Government funding of vital medicines, have 100% support from a coalition representing more than 30 breast cancer organisations.
Breast Cancer Aotearoa Coalition (BCAC) chair Libby Burgess says people should not have to go to politicians begging for their lives. “It’s tragic that our vulnerable women have to march on Parliament to call for access to treatments that they would get as a matter of course in other developed countries. All people in New Zealand should have the medicines they need,” she says.
We note that PHARMAC reported in June 2017 that the special $3.2 million fund they set up in 2007 to fund the SOLD Herceptin trial to see if 9 weeks of Herceptin could be as effective as 12 months, still had a balance of $319,000 unspent. They noted that recruitment was complete and that ‘future payments relate to publication and administration costs’.
