I joined a protest march….

… and I still don’t know if it was the right thing to do!

Last month I went on my first ever ‘protest march’ with a bunch of wonderful stage 4ers. We met at the entrance to parliament. And marched up the short path to parliament. It still counts right?

The march was to deliver a petition for Pharmac to fully fund two breast cancer drugs – Ibrance and Kadcyla – that can extend the length of the disease free period for stage 4 breast cancer (Ibrance or hormone positive tumours and Kadcyla for HER2+ tumours). While there is some Pharmac funding assistance provided, for Ibrance you currently need to pay for 11 cycles at c$6,000. Per cycle. So $66,000 in total. Then Pharmac will fund any additional cycles beyond that if it is still showing a benefit (no idea how that is proven!)
As shown in the recent report ‘I’m still here’ published by the Breast Cancer Foundation, the survival rates of stage 4 breast cancer are pretty woeful in NZ, with a median survival of 16 months from diagnosis (overseas rates are much higher, I found one US report stating median survival of 36 months). I’m Still Here states there are around 700-1000 people (99% women) living with advanced breast cancer (ABC) in NZ. Around 3,300 people are diagnosed every year with 300 at the advanced stage. Around 600 people will die each year. (The stats are all generalised, what does that tell you…). There are numerous different types of breast cancer which means these drugs aren’t for all ABC patients. Best guess is that around 250 might need Ibrance and considerably less, maybe 50, need Kadcyla.

Hmmm, maybe this is a good point to pop in a quick breast cancer tutorial! (I apologise in advance, brevity may not have won out here). So here goes, I’ve just randomly listed some words and descriptions (I’ve not even alphabetised them!) (Also this is about breast cancer, I know very little about the other solid tumours and nothing about blood cancers.)

Normal cells: can be fast growing (eg hair, nails, etc) or slow growing cells (eg skin, bones) that contain both an on switch and an off switch (ie a natural kill sequence) to ensure a circle of life type regeneration process. (Think skin cells that grow underneath then eventually shed. And make your house all dusty).

Cancer cells: rapidly growing cells that do not have the natural off switch of normal cells. (Some cancers actually affect the on switch, so they cause cell death without regeneration. So my bone mets could be causing bone hardening by growing too many cells, or weakening by killing off cells without replacement. I don’t actually know which I have). In addition cancer cells have the ability to break away from the original/primary site and get into the blood stream and find a home somewhere else.

Metastatic cancer: (aka stage 4, advanced or incurable cancer). Cancer that has spread from the primary site. Fun fact, I now have breast cancer in my bones (as distinct from bone cancer).

Benign tumour: cells with no off switch that do not have the ability to spread beyond the primary site. You’ve no doubt seen horrific pictures of people with massive growths. These can kill you if they impact blood supply or other functions.

Breast cancer: okay this is where it gets confusing! There are different types, grades and stages:

  • Types: There are three main types, which can be combined in various ways. Firstly (and secondly) it can have hormone positive receptors. Which essentially means that i) estrogen and/or ii) progesterone ‘feed’ the cancer cells. Without a supply of hormones they cannot replicate. Thirdly, it can have HER2 receptors. This is a human epidermal growth factor (no clue. Google it!). You will possibly have heard of Herceptin, which was initially refused funding in NZ and is now fully funded. It can also be a combination of the three. Triple negative (ie none of the above) is the most aggressive. I am hormone positive, HER2 negative which is apparently the least aggressive.
  • Grades: It can be graded 1-3 with grade 1 cells looking the most like normal cells (and therefore both slow growing but also not responsive to chemo), with grade 3 being very unlike the surrounding cells (and therefore aggressive, but also usually responsive to chemo).
  • Stages: it can be given a stage of 0-4 (with some substaging going on). Stages 0-3 are all local, with no evidence of it having metastasised. Stage 4 has metastasised. Usually to the bones, liver, lungs, or brain (mine is just in my bones).

Yeah not so quick. Worth mentioning that I am not a doctor. And I could be wrong, but rest assured I have done a lot of googling on the topic so I’m basically a doctor now. Lower case ‘d’.

Anyway, back on topic. Why am I not sure about the petition? Don’t get me wrong, I want the drugs to be funded. But I know that is a selfish desire, and our taxes (cos government money ain’t free) can only stretch so far. I get particularly angry at spending that makes no sense to me, I was going to mention a particular bugbear in the news at present but maybe ask me offline 😉. But I get that the teachers, nurses, police, roads, hell even the politicians need to be paid for. They all do valuable work (although maybe one group needs to learn to grow up a bit), but is it more valuable than my life? To me absolutely. But in the grand scheme of things not so much. Or is it that we’re all important so to truly appreciate life you have to value every life. In which case we’re doing a lot wrong in this world.

But also as shown in I’m Still Here, we are doing a woeful job of dealing with ABC in NZ. Prevention and early detection should be the focus. Do your checks, go to the doctor, look after yourself. The ambulance at the bottom of the cliff is not a long term plan when dealing with cancer in general. But now that I have fallen off that cliff. Hell I want these drugs. And I can see all the women clinging on for dear life all around me.

I want not just to live, but to have the chance to live normally for as long as possible. I am lucky in that I can afford to pay for Ibrance. But I know that not everyone on this cliff with me can. Is it fair that I will get the drug and others won’t. Simply out of luck of what family I was born into? But I also want the teachers, nurses, police and roads to be paid for. Without my taxes going mental. Something’s gotta give.

3 Replies to “I joined a protest march….”

  1. Dear Rache, I’m loving your writing, but I’m not loving you having cancer. I’m sorry you have these sorts of moral dilemmas to consider as well as everything else. I admire your “stubbornness”. Much love xx

  2. “But now that I have fallen off that cliff. Hell I want these drugs. And I can see all the women clinging on for dear life all around me.” Wow, that’s a hell of a metaphor, Rachel – hit me right in the feels. Hang in there. Really looking forward to catching up with you soon.

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