Migraine Australia is urging people who live with migraine to ‘Fix Question 28’ of next month’s Census, by asking for a paper Census form and writing in ‘Migraine’ on a new question about long term health conditions.
Question 28 asks people if they live with any of a given list of long term health conditions. The options given include asthma, diabetes, and arthritis, but migraine – one of the most prevalent and disabling long term health conditions in the world which costs the Australian economy $35b a year – was excluded.
Founder of Migraine Australia, Dr Raphaella Kathryn Crosby, said the need for good data about migraine has been a high priority issue since the organisation began two years ago, with no good government data on migraine prevalence available.
“We have been aware of the exclusion of migraine from this Census question since our very first organising meeting in 2019 – and all our calls and emails to both the ABS and the Minister’s office fell on deaf ears.
“So we’re asking all five million Australians who live with migraine to request a paper Census form so they can write in ‘Migraine’ on Question 28.
“People with migraine are tired of hiding, and tired of being ignored – we need to bring migraine out of the dark, and that begins with counting how many of us there are,” Dr Crosby said.
A single question in the Census is not as good as an epidemiological study for determining prevalence, however, multiple requests for funding to do a full prevalence study have been rejected and three separate applications for a migraine research Centre of Excellence have been unsuccessful. The reason given by the ABS for excluding migraine from the Census is that migraine is also not included in the National Health Survey.
Migraine is a complex, genetic sensory processing disorder and the number 1 cause of disability for people under 50 worldwide. Dr Crosby said the stigma that migraine is “just a headache” bites in many unusual ways, but the clear discrimination by multiple government agencies who refuse to collect even basic data about migraine is inexplicable.
“As this Census question will be used for most of the next decade as a rough reference of the most prevalent health conditions, relegating such a common condition as migraine to the ‘other’ box is unacceptable.
“We need to stop the discrimination against migraine; getting some hard numbers on how many Australians live with migraine would be a really good start,” Dr Crosby said.
“If the ABS won’t fix Question 28, we’ll just have to do it for them by writing in Migraine.”
Raphaella Kathryn Crosby
More about this issue is available at https://www.migraine.org.au/migrainecounts
Currently the only number on migraine prevalence in Australia is from the 2018 Deloitte Access Economics White Paper on Migraine in Australia: https://www2.deloitte.com/au/en/pages/economics/articles/migraine-australia-whitepaper.html
Please report on migraine using the right terminology!
Consult our language guide at www.migraine.org.au/language
More about Migraine www.migraine.org.au/about_migraine