16 October 2018

Telling it like it is: Women with advanced breast cancer demand what they need from Parliament

“We’re going to die soon if you don’t give us the medicines we need.”

That’s the message women with advanced breast cancer are giving to politicians today when they march to Parliament to present two petitions calling for the funding of two important medicines. They are joined by their family, whānau, supporters, and support groups.

One of the petitions calls for Government funding of Ibrance (palbociclib) and has more than 30,000 signatures. The other petition is for Kadcyla (T-DM1) and has more than 2,300 signatures. Both medicines are equally important and hailed as game changers for women with advanced breast cancer that can extend lives for years.

“We desperately need medicines that will give us more years to live – more time with our loved-ones, to celebrate a 25th birthday or 50th wedding anniversary, to prepare our children for growing up without a mother. That’s something worth fighting for,” petition organiser Terre Nicholson says.

“We simply want the same chance at extra years to live as citizens of other OECD countries have. New Zealand has fallen way behind our counterparts in providing life extending drugs for the Metastatic Breast Cancer community. More years, more hugs, more love, more life – that’s worth fighting for!” Sue Wall-Cade, fellow petition organiser says.

Terre and Sue are part of a group known as Metavivors, people who have joined together to support each other through Facebook and friendship because of their shared journey with advanced breast cancer (also known as stage 4 or metastatic cancer). Metavivors come from all over New Zealand and many have travelled to Wellington for the march.

A member of the public commented that these drugs would only “buy about two more years” for people with advanced breast cancer. This made the Metavivors think about what more years of life would mean to them if these medicines were funded in New Zealand, as they are in most comparable countries, including Australia.

“We all have very important reasons to want extra time, Terre says. “In addition to having more time to spend with our families and make memories, extra time also means we're two years closer to a cure. With rapid advances in research, a cure (or something close to it) may only be a few years away. We want to be alive to see it. Our lives matter.”

On the following page you will find more poignant reasons the Metavivors want more years added to their lives.

What two more years alive means to me:

Women with advanced breast cancer describe what two more years means to them if the life-extending medicines they are seeking are funded by the Government. Here is what some of them have to say:

Emily Stein: My toddler might remember me.

Claudine Johnstone: My youngest is 3, almost 4. Two more years means taking her for her first day of school, hearing her learn to read. Two more years means her remembering me for herself, not remembering others’ retelling of who I am.

Nicola G: It means my daughter losing me as an 8-year-old, and able to cope a little bit better than as a 6-year-old. Friday was her school production. They are held every 2 years. So 2 years means that I will get to see the school production when she is 8 years old.

Paula Diane Neutze: I’ll see my boys turn 17 and 19. I would help my youngest cope with the stress of teenage life with ADHD and build resilience in my oldest who has the kindest nature and the softest heart.

Elisa Lavelle Wijohn: Not feeling guilty that I’m taking [money] from my whole wider family just to keep living and keep hoping. Celebrating my 25th wedding anniversary with the love of my life. Seeing my eldest establish himself as a sailor, my middle finish high school and set out in the world, and be there to support my youngest starting high school.

Kerry Forhecz: Celebrating my 50th birthday, seeing my son graduate, and preparing my young daughter for coping with growing up without a mother and become a strong woman. Two more years creating family memories. Two more years to help educate people about early detection of cancer, coping with depression and self-harm, and helping ensure people get better access to life-prolonging drugs.

Nii Krystalh: It means my kids will be five and seven years old and will remember me with substances however little it may be, but hopefully enough to understand how much I tried to be here for them!

Mary Margaret Schuck: The past two years of self-funding my medications has meant I could mother my two eldest children through high school with all those questions about relationships and jobs and life to being more confident young adults. Two more years would get my youngest through high school as well and on his way.

Lesley Carroll: The years post-stage 4 diagnosis fly by and it’s frightening. Not knowing how much time you have with your family and knowing it is limited fills my thoughts. Two more years would give me more sleep-overs with my grandchildren, giving them hugs and cuddles.

ends

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