Organising the fight of my life

Cross-posted from Begin Rant

I’ve fought many fights over the years. Big banks, internet filters, even fighting to save the Democrats. It’s not often you win these kinds of fights. But this fight I simply have to.

Migraine has completely consumed a decade of my life. That’s not an exaggeration. And it’s not the longest someone has been dealing with disability from migraine disease – there are many people I’ve come into contact with in the few short months since we started working on Migraine Australia who have been in the trenches for 20, 30 even 50 years.

For a very long time, the migraine community has been one without hope.

Any hope.

If you had migraine, you were told to suck it up. Nothing to be done, best you can hope for is to take the edge off. Never taken seriously because “it’s just a headache”.

With the introduction of the CGRP meds there is a wave of hope rippling across the migraine community. And like watching the fire of Barack Obama’s campaign from a tiny ember to a fire that lifted the hearts of the world, watching this hope bring the migraine community to life is something special.

We have some very significant battles. And not just with getting these new drugs on the PBS, although that is a monster fight.

I want to reach a time where migraine is:

• never thought of as ‘just a headache’;
• understood to be a genetic, incurable, spectrum disorder;
• recognised as an invisible disability, with appropriate supports and protections;
• diagnosed early and managed effectively;
• well funded and well researched; and,
• a central feature in every party’s health policy.

This is a very big ask. And the more I keep working on the issues, the longer the wish list gets, and the more issues come out of the woodwork.

My current policy ask list for Government is:

• all new migraine meds on the PBS;
• a clinical neurologist on the PBAC;
• migraine to be acknowledged throughout all of government (state and federal) as an invisible disability, with access for people with migraine to the NDIS and maintained access to DSP when appropriate;
• migraine to be included in any relevant government research, and put on the AIHW list of chronic disease for regular reports; and,
• A parliamentary inquiry into the burden of migraine.

That’s not including the ideas to have a migraine access centre to ensure bulk billed access to neuros and visiting teams to provide access to rural patients, or the very unlikely pipe dream of migraine nurses or nurse practitioners embedded into emergency departments to fast track treatment of migraine patients, cutting down everyone else’s wait time and getting migraine patients out of the *worst* environment possible with a bad migraine – the fluro lit, noisy, ED waiting room.

And it’s not including the migraine management plan and national awareness campaign that we desperately need.

But this is not a fight I can afford to lose. I have been in the dark for too many years battling migraine, and am only able to do what I have done so far because of Aimovig. Aimovig will not be on the PBS, because of repeated indications by PBAC (specifically, the rejection of a request to lift the Botox cap in March 2019, and the decision on Emgality in July 2019) that they do not think migraine is worth spending taxpayer’s money on. These repeated decisions by PBAC to dismiss migraine as unworthy caused Novartis to pull Aimovig out of the PBAC process.

I will not go back to the dark. So fight we will. There are literally millions of people living with migraine, thousands of them are highly intelligent, vary capable, mostly young women that have had a taste of getting their lives back, and are, like me, flatly refusing to go back to a life of complete disability. I am proud to call them my friends. Together, I believe we can do great things.

Hold on tight, it’s going to be a wild ride.

End rant.

Want to get involved? Start by joining the Migraine Australia Chat Group, more details there.

Want to help? Donate or volunteer at www.migraine.org.au