Giving up Aimovig

After two glorious years on this miraculous, life saving drug, I have given up Aimovig. I didn’t want to. I shouldn’t have had to. And I’m furious.

In December there was a problem with my Aimovig order. Cold chain was broken and my Aimovig was sent back to Novartis. My last dose was due January 1, and I had ordered it in good time on December 18. Went to pharmacy on Dec 22, 24 and 29 but it wasn’t there. Called again the morning of the 30th before calling for help – and the first person I spoke to was clueless and said it hadn’t been ordered. A more senior person called back and said that he had been on to Novartis and uncovered a confluence of events that resulted in no Aimovig for me:

• My original order was dispatched Dec 21 to be delivered Dec 22. 
• Cold chain was broken. Order sent back by the courier Dec 23, arriving Dec 24.
• Everyone at Novartis had knocked off for Christmas so it wasn’t actioned. 
• It wasn’t possible to dispatch until the 4th of January because no couriers were delivering until then – they needed two consecutive work days to dispatch and deliver without cold chain being broken, and y’know Christmas/New Year public holidays blah blah.

By the time it was dispatched on January 4 and received on January 5, I was 5 days overdue. And I felt ok – I’d had one minor attack but it was manageable.

Given that I had been utterly failing at getting a job and money was so very tight, I had to have a very tough reckoning: should I not take this dose until I get a job? Or can I just hold off on taking it for as long as possible?

I opted to just wait and see what happened. I couldn’t justify continuing to ask my retired Dad for money to by $700 a month medication that has no prospect of getting on the PBS. Particularly when the other two – Emgality and Ajovy – have long been recommended to be on the PBS – 21 and 12 months ago respectively – and our wonderful Health Minister doesn’t seem inclined to list either of them.

So I waited. And sure enough, by late January I was sliding into the dark very quickly. I swore I would never go back to the dark. I said repeatedly I’d rather die than go through this again. But here I am.

I am in pain. My body doesn’t work. I can’t sit up most of the time. I’m nauseated all the time. I’m scared to drive again. I’m getting stuff wrong all the time. I’m not eating properly because cooking is cognitively and physically too hard. Even this blog post I’m doing by voice to text software, because typing hurts.

I tried going back on Topamax and it made me worse. That last dose of Aimovig, the one I was due to take on January 1 sits in the fridge staring at me every day, taunting me, that salvation from this horrible meaningless existence is literally right here.

It is taking an enormous amount of willpower to not just take it. But if I do that, then what happens when I do get a job, and don’t have any more Aimovig? The time lag from starting to getting a first pay, to ordering and then getting the meds, is too long – I’ll easily get fired in that first month if I simply can’t do the job.

I don’t know how long I’ll last. It’s pretty bloody hard at this point. And I’m so angry. So furious at the world. And while most of the country has their pitchforks out for politicians who can’t respond to rape allegations with a shred of humanity, my rage is directed squarely and solely at Greg Hunt.

I shouldn’t have to live like this. This is not supposed to happen in Australia, right? We have universal health care, it should be affordable to manage illness in this country! Well it’s not.

Hunt has presided over the gradual dismantling of the PBS for a long time, and it has ramped up over the last year. I no longer hold any hope that any of the new migraine medications will be listed on the PBS. At least not without a change of government. And Labor isn’t stepping up with any credible or impressive alternative offering, so I don’t hold much hope of that either.