Migraine Australia has launched the first ever support service for Australians with migraine with ten local support groups starting up this week.
Led by local volunteer ambassadors, each local Migraine Warrior Support Group connects online and through local meet-ups, providing peer support and helping to direct people with migraine to the services they need to manage their condition. The program is entirely driven by volunteers and has no funding.
Migraine Australia founder, Raphaella Kathryn Crosby, said one in five Australians live with migraine, and most either don’t take seriously or hide it from others in their life. For some, it is impossible to hide and completely debilitating.
“Often the best people to help with the lifelong challenge that is managing migraine are other migraine warriors,” Ms Crosby said.
“It is our hope that through these local support groups everyone with migraine can connect with others in their local community who live with migraine in a stigma-free space. Connecting with others who get it is a really important step in taking control of your migraine.”
Research conducted by Migraine Australia earlier this year found that 94% of people living with migraine felt they had been stigmatized and their condition belittled as ‘just a headache’. The biggest source of stigma was doctors, followed by extended family and work colleagues, many of whom don’t believe the severity of symptoms, or believe they are making it up to attract sympathy, get out of work, or to get drugs.
Migraine Australia’s target is to have around 50 local groups active by the next Migraine Awareness Month in June 2021. Each local group will have their own local Facebook group, in addition to the Migraine Australia Chat Group which is the largest online support group for Australians with migraine. Migraine Australia also runs a Migraine Family and Friends group to provide support for those who care for people living with migraine, and a Men with Migraine group open to men around the world.
The ten local Migraine Warrior Support Groups that have started so far are:
· East Melbourne
· Sunraysia (the border area around Mildura)
· North Sydney
· Hunter Valley
· North Brisbane
· Gold Coast
· Fraser Coast
“The migraine community has been on a particularly cruel rollercoaster for the last two years, with breakthrough new medications that prevent migraine attack dramatically changing our lives, but not being listed on the PBS, meaning most of us cannot access them.
“This is despite these medications being recommended by the independent Pharmaceutical Benefits Advisory Committee (PBAC) many months ago, and despite Greg Hunt’s repeated claims that they would list everything the PBAC recommended,” Ms Crosby said.
Emgality was recommended by PBAC in July 2019 and Ajovy was recommended in March 2020. Along with Aimovig, which was withdrawn from PBS consideration after being rejected twice, these are the first medications ever designed for the prevention of migraine attack. They work by blocking a peptide called CGRP which surges during the early part of migraine attacks, reducing both the frequency and severity of attacks. Bizarrely, these medications are being held up because there’s too many patients who need them.
“It is critically important that we put some love and support around our battered community. To be able to start delivering that support so early in the life of Migraine Australia is a real testament to the will of our volunteers,” Ms Crosby said.
“We know many people are very keen for a group in their area. We will start up a local group in any part of the country as soon as we have two ambassadors in that area, so if you want a local Migraine Warrior Support Group the best thing you can do is volunteer to become an ambassador.”