It was so nice to finally met Malcolm in person and Fiona Tolich, the real drivers behind the petition. It was just like meeting old friends. I didn’t get a chance to count but there was maybe 30 others there. Unfortunately with all the press attention and activity I felt like I hardly got to speak to anyone, so please accept my apologies, I really would have loved to chat to all our supporters.
After talking to the press, I whipped out a few tools and separated the coffin from the trailer. Then Malcolm’s amazing Auntie (such mana and presence in such a tiny form - I have no doubt she could command an entire Marae) led us up on to parliament grounds in an solemn procession.
It turns out that even though you and I, as taxpayers, own the parliament buildings it seems you’re not allowed even to touch them. It didn’t take long for three security guards to swoop down and explain, in no uncertain terms, that we were not going to be allowed anywhere near parliament steps.
I struggle to understand what they were afraid of, given that an MP has driven a tractor up them previously.
What were they worried would happen? Would our touching the steps trigger a sudden uprising of the Wellington populace? Would we somehow be some threat to the MPs by walking up the steps? That seems hard to believe given that out of 120 a sum total of zero seemed to be present. Perhaps at the top there is the button that triggers the long overdue earthquake on Wellington’s faultline and they were worried we might inadvertently knock it.
When I asked the security staff what they were afraid of, they didn’t explain just said that “it wasn’t allowed”. Perhaps they lose their jobs if they let someone through or maybe they have a quota of people they have to stop to get their annual bonuses? Either way they didn’t seem to have the ability to read the situation and think that perhaps we weren’t that much of a threat.
Still at the end of the day we want to make a point and not upset or antagonise anyone so we decided not to push the issue and place the coffin as directed and we put it between the flag poles you can see in the picture above. After all, placing the coffin 50 metres away doesn’t alter the fact that New Zealanders are dying unnecessarily on this government’s watch.
Apparently this wasn’t good enough and we were told it had to be at the bottom of the steps below. At this point we had had enough. I said we had compromised and called on them to compromise too and we refused to move further. This was finally accepted.
We made some speeches and talked to the press, some of which later made the TV1 News, RNZ and other outlets. One member of the press had sought comment from David Clarke and read an email response to me (so this is second hand) that was basically a pat response about how the Labour government has increased Pharmac’s funding (recently approving the Palbociclib) and that they would be putting in $20 million more this year and that the Labour government would not be reviewing or reforming Pharmac. My response was that this was piecemeal and a drop in the ocean compared with what is required. They seem to be trying to appease the electorate and fund drugs that have popular backing due to high demand, but have little regard, for example, for the 23 New Zealanders whose lives would be transformed by Kalydeco.
David Clark, if you are reading this, let me explain how this works…
Without medication our daughter’s condition (which you will have to treat in hospital) will continue to get worse. Eventually, if she is like most people with cystic fibrosis, she will end up in hospital every second month, taking up a bed, requiring operations and medication. After this goes on for a long time, if she is lucky, she will get on a lung transplant list and eventually have the lung transplant. I don’t know the actual cost of all this but a conservative estimate would be millions. Due to her condition she wont be able to work or pay tax or contribute to any measure of the GDP in any way. Meanwhile her mother has stayed at home to be there for hospital visits etc, another person not working, not paying tax, not building up a KiwiSaver nest egg, not productive in economic measures. So lets add another couple of million for that. Then there is the opportunity cost, beds get tied up in hospitals so that means someone else misses out or you need to build a bigger hospital. Due to cross infection issues other people with CF need different rooms must be kept away and infection control put in place if both are in hospital at the same time. The rooms need a terminal clean between visits. It really does go on and on and on. Start adding it up and the cost to the country of that one patient, in real terms, may well be in excess of five million dollars.
Or, now here’s and idea, you could fund the incredibly effective drug that saves all that money (and all that suffering and misery) and, even at the exorbitant prices that the pharmaceutical companies charge, the country would still be better off economically. It just does not make sense not to fund these drugs as you end up having to pay many times over elsewhere in the health system where because of the extent of the sickness people get really expensive to treat.
I’ve used a cyclic fibrosis example above but this same economic argument plays out across all the other conditions needing the medicines on Pharmac’s wait list.
I hope I’ve made that clear for you, David, but feel free to give me a call to discuss it any time if you have any questions.
Then, almost anti-climactically we were done and it was time for us and our entourage to leave.
Woah there - not so fast!
Our security friends informed us that we absolutely could not leave the coffin without it being received by a parliamentarian. Funny though, there were absolutely zero parliamentarians around to receive it. We were definitely going to leave it there. After all it was our gift to them and, surely, it would have been rude to refuse it. What’s more absolutely no one was going to make Millie and I move it even 1 metre more.
Given we didn’t see how they could stop us leaving, Millie and I walked off to get the bike and I’m pretty sure, Malcolm and the others drifted away after that. Since we went across the road to the backbencher to have a post mortem (pun intended) with Malcolm and Fiona we could see that finally there was one security guard left standing out in the cold wind beside it. At some point after that it disappeared. I believe into storage for a few days before, I suspect, it will be destroyed. All those messages written on it, no doubt, ignored.
It was so wonderful and interesting to finally talk to Malcolm and Fiona in person and hear about all their hard work to date. I was particularly shocked when Fiona told us how 25% of the ALS community has moved to Australia to access the medication that is available there and not here in New Zealand. Another shocking statistic all MPs should be absolutely ashamed of. It seems it’s government policy to send our sick people overseas so they don’t burden our health system (no doubt it makes the DHB’s dire finances look a little better) and if that’s not government policy well they clearly need to change it because the current policy is clearly not working.
We had sent Hope, the skeleton, on with Ant (who with Helen we’re kindly giving us a bed for the night - thank you so much - such a treat for us) and all that remained was to ride the tandem up to their place. Before we set off we decided to pick up a reward for the end of the ride in a form of a six pack of Panhead Rat Rod (my current fav) which we had to put in the toddler seat as we had no other way to carry it.
At one point Millie turned around and said “Look, we’ve replaced Hope with alcohol” which seemed a sadly appropriate comment on the outcome to date.
But the fight will continue…
I’ll be doing one more update to complete the gratitude post before we finally take a much needed break.
