TL:DR - We're asking both sides of politics to show some #migrainelove and commit to funding for migraine research and awareness, and to putting new medicines that prevent migraines on the PBS (the first one is called Aimovig). And we're asking for those commitments before the Australian Federal election on May 18, so those who want to vote on this issue know who to vote for. Please sign and share!
Migraine affects an estimated 5 million Australians. That's double the number of people living with asthma, 5 times as many people with diabetes, 10 times as many people living with cancer or dementia. It costs the economy an estimated $35 billion a year.
Migraine is an ignored, underfunded and misunderstood condition. It is not 'just a headache'. It is a debilitating and disabling condition which disproportionately affects working age women. We don't begrudge other unwell people the support they get, but yet another budget and (by the looks) another election campaign where we don't even rate a mention is not ok. Migraine is the least-respected, most-neglected and worst-managed medical disorder worldwide, and we're tired of being ignored.
Far too many migraine sufferers in Australia are permanently disabled. Especially those with chronic migraine (more than 15 headache days per month), migraine with aura (seeing lights or blind spots, other sensory disturbances or speech issues), hemiplegic migraine (which causes weakness and numbness down one side), and brainstem migraine (which can involve everything from loss of balance, hearing and speech issues, to loss of consciousness).
We can't drive, work, take care of our kids, or have anything that resembles a normal life. Reliant on a disability pension or family support, we are dumped on the garbage heap of the nation and forgotten.
A new class of medications based on science around the role of calcitonin gene-related peptides (CGRP) has given us the very first ray of hope in getting our lives back. The first of four drugs in the new generation of migraine preventative treatments, Aimovig, is being trialed by many chronic and severe migraine sufferers with truly amazing results.
We can drive again. We can work again. We can take care of our kids again.
But the cost is $800 per injection. We need Aimovig to be on the PBS now so we can get off our disability pensions, stop being a constant drain on the health system, and get our lives back.
Far too many have trialed Aimovig for the 3 months that Novartis has offered it for free, had fantastic results, and then slid back into the darkness of relentless migraines because they can't afford the $800 per injection. We need this medicine. Now.
We also need funding for migraine research and awareness. We don't understand so much about our condition, because the research simply isn't done. There has not even been a decent study on how many Australians are affected by migraine or how much money it rips from the economy: statistics are based on overseas studies. And a campaign to raise awareness of the condition is desperately needed, so that everyone can understand how serious it can be (particularly the increased risk of stroke), that common treatments like codeine can make it worse, and that there are migraine specific treatments available, including Triptans and the new generation CGRP preventative treatments.
To whomever the Prime Minister and Health Minister is after the election, we need:
- Aimovig on the PBS urgently
- Priority listing to the other CGRP treatments such as Emgality and Ajovy as they become available
- Funding for research and awareness of migraine
And we'd like you to commit to these three things as part of your election campaign so we know who to vote for. #NoAimovigNoVote
If you suffer from severe or chronic migraines we recommend the following Facebook groups:
Australia - Aimovig migraine treatment group
Chronic migraine awareness Australia and NZ group https://www.facebook.com/groups/CMAAussieNZ
Australia Hemiplegic and Chronic Migraine Support Group