Having to choose between eating and coping.

As most of you will know I’m an Aimovig super-responder. Aimovig is one of the new CGRP medications to manage migraine and being a super-responder means I’ve had my migraine attacks reduced in frequency and severity by 75%. Unfortunately, I can’t afford the drug. Well, unless I don’t want to eat or don’t mind being homeless.

Aimovig was withdrawn from the PBS process (the Australian public drug insurance program) meaning that instead of paying a maximum $41 per script for Aimovig, I’m paying $695. I don’t have $695 spare in my budget every month.

With Aimovig, I am near fully functional and can go back to work. Without Aimovig, I’m resigned to a life on disability support pension with carers coming in every week to clean and make sure I’m not dead. That is the kind of black and white, night and day, completely different life these new medications are delivering for many thousands of people living with migraine.

It’s those many thousands where we run into trouble. The Pharmaceutical Benefits Advisory Committee, or PBAC as they are known, is the independent committee that tells the Government which drugs they should put on the PBS. They found these new CGRP medications work, and they are cost effective – but there’s too many people with migraine so don’t fund it.

Too many people whose lives could be changed, who could get off welfare and become taxpayers again, so don’t give them the drug whatever ya do.

At the moment, one of the competitors to Aimovig, Emgality, is going back to PBAC to seek another recommendation. (Find out how to make your comments here). They shouldn’t have to: they have a positive recommendation from PBAC – from a year ago. It’s taken them that long to come to some sort of agreement with the Health Department. And that agreement being made, they should just be able to move on to the ministerial/cabinet sign off bit – but they’re going back to PBAC, because Hunt (lied and) said that the PBAC advice was a legally binding requirement.

I could go down a very deep rabbit hole of how complete screwed this whole process is, but for now, I just wanna be selfish and focus on me.

I don’t want to go back to the dark. Dad has shouted me a couple of doses, otherwise I would have had to give it up already, and he is adamant I shouldn’t go back to the dark. But that’s not sustainable: I can’t ask my retired father to fork out $10k a year because Greg Hunt doesn’t want to do his job.

So I need to readjust my budget accordingly. I get $24k from the government. I f I give up $10k of that for Aimovig, that leaves me with $14k a year for everything else, or $538 a fortnight. So, what am I giving up? Rent or food?