Media release:  A powerful group of women will be speaking at the Health Select Committee on 13 and 20 March to describe how traumatic it is for them to know that medicines that would give them longer lives aren’t approved for funding in New Zealand.

They want MPs to imagine if they were faced with a death sentence, how they would feel to know that medicines that could enable them to live longer and have a better quality of life were beyond their grasp.

The group is known as Metavivors NZ, a group of women with advanced breast cancer, who are demanding better breast cancer treatment.

They will describe in poignant detail their personal experience with advanced breast cancer and what it’s like knowing they could have more time alive with their family if the medicines were funded in New Zealand as they are in most comparable countries.

The women will explain why they need important medicines to improve their quality of life. The medicines are Ibrance and Kadcyla.  In a march to Parliament in October, petitions were presented to MPs asking for these to be funded. The matter was referred to the Health Select Committee.

Petition organiser Terre Nicholson has advanced breast cancer and has held it off for some years but there are signs it is progressing. She says if her cancer progresses rapidly, she will need Ibrance or a similar drug of the same class. It would be available and affordable any comparable country but not here which is heart-breaking.

“People tell me I’m brave and strong. I’m neither. I’m just doing the best I can to get through day by day. I live in three month chunks – from blood test to blood test. Now it will also be from scan to scan,” Terre says.

“And right now, I’m terrified. All the ‘what ifs’ go through my mind. What do I fear? I fear what will become of my little family. I fear losing my house when I can’t work. I fear being in pain. I don’t fear dying, but the process of getting there scares the hell out of me.”

Some of the women including Terre will describe how they feel let down by the Government and PHARMAC, and will express their urgent calls for a review of PHARMAC. At the march, Malcolm Mulholland, husband of Metavivor Wiki Mulholland, presented a formal letter to MPs calling for an independent review of PHARMAC’s processes, timelines, funding and culture.

Written and video submissions have already been received by the select committee. Women speaking to their submissions at the hearings are travelling from all over the country, with funding contributions from the Karen Louisa Foundation.

Breast Cancer Aotearoa Coalition (BCAC), Breast Cancer Foundation NZ, and Sweet Louise (which provides support to women with advanced breast cancer) have all made strong and clear submissions to the committee.

BCAC Chair Libby Burgess says: “Our submissions together show that many people care deeply about the women who are being denied treatment. Let’s hope the Health Select Committee members are moved by the evidence and the stories and accept that it’s their responsibility to do the right thing.”

TO WATCH the Health Select Committee hearing live, go to the Health Select Committee Facebook page on Wednesday 13 March, approx. 9am to 12 noon. The women’s submissions are scheduled to begin from 9.30am.

12 March 2019

Media contact:

Ali Tocker, Communications Advisor, phone 027 211 2159, email alit@breastcancer.org.nz

 

 

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