Migraine is the most underfunded, underdiagnosed and undertreated condition in the country.
Misunderstood and stigmatised as 'just a headache' for decades, scientific breakthroughs in the understanding of migraine - led by Australian scientists - have kickstarted a migraine revolution.
Migraine has been redefined as a genetic sensory processing disorder. And new medications are having a truly transformative effect, returning completely debilitated people to being completely fine.
Misunderstood
The vast majority of people living with migraine - and their doctors - do not have even a basic understanding of what it is and how to manage it. In fact, most people with migraine are still walking around feeling guilty that they have done something wrong to cause it.
The simple fact is that the deeply structural stigma that we face in every aspect of our world, the crushing anxiety and fear we live with trying to manage our condition and hide what we are dealing with to be 'fine' all the time, and the isolation that comes from living with migraine, progressively losing our friends, work, and even families as migraine does its worse, are all far worse than a headache.
At the moment, the Government and health system are making us sicker, rather than helping us to get better. They are keeping us debilitated, rather than giving the fairly simple care we need to manage our condition and get our lives back.
Denied
While the science has changed dramatically, almost everything else has not kept up.
We are still denied access to medical care and medication until we are completely debilitated.
We are still denied access to things that every other chronic illness has access to, like specialist care centres, large scale awareness campaigns, research funding - and even some really tiny things, like being explicitly excluded from the list of chronic health conditions who qualify for a subsidised flu vaccine.
We are still left out of any statistics on chronic illness and disability.
We are still routinely denied access to disability support services, including the NDIS and Disability Support Pension.
We are still routinely denied reasonable accommodations at work and school, and many people with migraine have been fired from their jobs because of their disability, and the widespread problem of 'migraine' being a euphemism for 'sickie'.
We still do not have a centre for research excellence, a national strategy for managing migraine, early intervention program, specialist migraine care clinics or acute crisis centres, or even an accepted standard migraine management plan for GPs to use.
We have close to nothing. Even to get a referral to a neurologist that may be able to help can take years.
The three of five new migraine medications that we have gotten on to the PBS took years and years of fighting, and are still only available for a select few.
Hope
However, we're just about to reach the tipping point. There's now a significant number of people who have been on the new CGRP medications long enough to stabilise their migraine and get their lives back. And as they get out of the dark and back to the world, they're telling anyone who will listen about how their lives have been transformed and encouraging others with migraine to go see their doctor.
In the next couple of years, roughly half a million people living with significant migraine will no longer be debilitated, and will be able to come back to the world.
And there's about a million more that will stop the dance of switching jobs, working two part time jobs instead of one, or working in the gig economy, to avoid being found out. That will no longer have high rates of presenteeism and absenteeism.
Give migraine a break
To make that happen, we need to give migraine a break. We simply have to, as a nation, accept the science and shift our understanding of what migraine is. From the Cabinet table in parliament house to the kitchen table at home, we need to give migraine a break and it's fair share.
We're not asking for anything unreasonable or excessive - or even that special.
We just want timely access to affordable and effective medications, care and supports, like any other condition.