Migraine Australia has appointed an expanded board as it gears up for one of its biggest fights yet to get equal access to health care for Australians living with migraine.
Six inspiring and highly qualified women were appointed to the Migraine Australia board at the Annual General Meeting earlier this week. They join founder, media professional and political strategist Raphaella Kathryn Crosby, Men with Migraine leader Alex Delaney, and Advisory Committee representative and finance professional Karen Woodhart, in a full board of nine, all of whom live with migraine.
Those appointed on Sunday include mental health advocate and fashion business leader Jude Kingston and CPA and tax specialist Kristy Norman-Hade, who were both confirmed as Directors after joining the board earlier this year as Casual Directors. The four new faces are global risk and governance consultant Kristyne Weiss, nutritionist and former public servant Kelly Joy, educator and not for profit executive Pamela Simon, and medical research and technology professional Michelle Richards.
Dr Crosby says the expanded team is necessary for the fight ahead, with the next 12 months set to be the most critical in the organisation’s short life.
“We have Aimovig back before PBAC trying to get onto the PBS for a fourth time in November. This is the drug our organisation was founded to fight for, the first in class of the new CGRP medications, and we are not taking ‘no’ for an answer this time.
“The real game changer of the new migraine medications, Nurtec, which has also applied for PBS listing and was rejected, is expected to come back to PBAC in the next year. We’re going to have a massive fight on our hands for that one with millions of patients who could benefit from this breakthrough medication.
“And we need to get the new CGRP medications accepted as first line, not last line therapy - as they have been in the US and elsewhere. That means people with migraine should be offered CGRP medications first by their GPs, not only after becoming completely debilitated and needing to be under the care of a neurologist - if they can even get an appointment or afford to see a neurologist.
The fight for medication access is however only one part of the fight to get effective, affordable, and equitable care for Australians with migraine. The members of Migraine Australia voted for the organisation’s priority for 2025 to be getting migraine recognised as a disability with equal access to supports.
“Our members have made it clear they are sick and tired of being denied access to disability supports, including Disability Support Pension and the NDIS.
“Just as it is not ok for the government to refuse to list our medication on the PBS because there’s too many of us, it is also not ok for the government to say that we aren’t entitled to disability supports because there’s too many of us,” Dr Crosby said.
Around five million Australians live with migraine, a very complex genetic sensory processing disorder that has a very broad spectrum of presentations. Just like Autism, people with migraine move up and down the spectrum throughout their lives, at times being able to manage their condition so it has little impact, and at others significantly affected, or even completely debilitated and requiring care. However, because of the common misconception and stigma that it is just a headache, people with migraine are frequently denied the kinds of support, accommodations, funding, and even basic medical care that people with other disorders receive.
“Our community deals with horrible discrimination, day in, day out.
“Triaged last in emergency, regardless of how we present. Specialist appointments canceled because others are deemed more worthy. Bullied by Centrelink into not applying for the benefits we are entitled to. Fired from jobs because we dared to ask for reasonable accommodations.
“Do you have any idea what it feels like being told that your completely debilitating migraine doesn’t qualify for disability supports, but to use a comparatively minor comorbidity like anxiety to apply for DSP or the NDIS? This isn’t a rare thing, it’s a story we hear all the time,” Dr Crosby said.
“We’re not saying everyone with migraine needs that level of support, but there are thousands who do. And it’s fundamentally wrong that they be denied those disability supports because some bureaucrat thinks migraine is just a headache.”
The lived-experience patient body is planning to campaign for both parties to commit to improving migraine care and support during the election campaign.
“We know that getting the government to take migraine seriously starts with the whole community understanding we aren’t talking about headaches,” Dr Crosby said.
“But hopefully a gentle reminder that 1 in 5 voters - and the entire margin of victory in any election - lives with migraine will also make them think seriously about giving some hope to migraine warriors across the country.”
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Media Contact:
Raphaella Kathryn (RK) Crosby
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