The New England Times is joining with many organisations and people around the country going Burple – wearing burgundy or purple – for migraine awareness today for Migraine Australia’s Burple Day.
Migraine Awareness Month is held in June each year. It is the major annual awareness activity of the global migraine community with over 35 countries conducting activities throughout the month. Migraine Australia, the only patient body supporting Australians living with migraine, has led the month of activities each year since bringing the event to our shores in 2020.
Burple Day was added to the activities this year to make it easy for everyone to show their support for the five million Australians living with migraine by simply wearing anything burgundy or purple on the first Friday in June, June 7.
Migraine is a complex genetic neurological disorder that has a wide spectrum of presentations. Symptoms of migraine attacks are diverse, ranging from from nausea, dizziness, and fatigue, through to stroke-like hemiplegia and significant gastrointestinal upset. Severe headache is common, but some do not experience headache at all. Each person living with migraine has a slightly different combination of symptoms, triggers and treatments.
1 in 5 Australians live with some form of migraine disorder, with working age women the most affected by frequent debilitating migraine attacks. It is one of the most prevalent disorders in the world, and one of the least understood due to almost no research grants or other funding being directed towards migraine.
Founder of Migraine Australia (and the New England Times), Dr Raphaella Kathryn (RK) Crosby, said migraine doesn’t get its fair share of health services and funding because of the myth that migraine is ‘just a headache’.
“The ‘just a headache’ stigma is really challenging, and routinely stops people with migraine from getting the care and support we need.
“Migraine is a genetic, life long condition, that makes your brain work differently. It isn’t a headache – and a headache, no matter how severe, isn’t migraine, it’s just a common symptom,” Dr Crosby said.
A wave of new medications in recent years based on breakthrough science have been life changing for many. Unfortunately, most of them are cost prohibitive as they are not on the PBS. Three preventative treatments are only available on the PBS for those significantly debilitated by migraine who have failed everything else and are under the care of a neurologist.
“As an organisation and a community we really struggle with how hard is to access care.”
“Finding a GP who takes you seriously is hard, getting referred to a neurologist is hard, and then you have to jump through hurdles, forced to take medication for blood pressure and depression, before you can have access to treatments that work,” Dr Crosby said.
Dr Crosby said the organisation has recently begun to ramp up for a renewed fight to get two medications – Nurtec and Aimovig – on to the PBS. Nurtec, made by Pfizer, is the most promising medication of this new class that may be able to help the most people because it can be taken preventatively or acutely. It was approved by the TGA last year but was rejected from the PBS. Aimovig was the first in class of these new medications and was rejected by the PBS several times in 2019, but Migraine Australia has never given up hope of getting Novartis to try again.
Migraine Australia has been lobbying for these medications to be added to the PBS for years, and rejects the excuse given that these medications cannot be listed on the PBS because the number of patients, and therefore cost to the budget, is “high and uncertain”.
“We understand that migraine is a challenge for the health system because there are so many of us, but we shouldn’t be denied adequate access to health care because our medical condition is common.
“We also know that getting the government to take us seriously starts with the community understanding we aren’t talking about headaches,” Dr Crosby said.
“As we rally for another fight to get these remarkably effective new medications on to the PBS, we really hope the community will support us in asking for a fair share of health care.”
All New Englanders are asked to show their support for people with migraine by wearing burgundy and purple today, Burple Day, Friday June 7, 2024.
More details are available from the Migraine Australia website www.migraine.org.au
Connected with the Migraine Warriors New England support group on Facebook. https://www.facebook.com/groups/migrainenewengland/
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