New Data Uncovers Serious Challenges Faced By People With Migraine In New Zealand

Migraine Foundation Aotearoa New Zealand has begun to publish results from its 2022 online survey, providing much-needed data of the lived experience of people with migraine in Aotearoa.

The migraine charity has released nine key insight reports, with more to be released over the coming months. Some of the reports already released provide information about the impact of migraine on work, migraine stigma, access to health and allied health professional services, the perceived knowledge of health professionals treating migraine, and feeling judged or misunderstood because of the neurological disorder.

“One of our key objectives when we launched the charity last year was to support and encourage more migraine research in New Zealand,” says Dr Fiona Imlach, co-founder of Migraine Foundation Aotearoa New Zealand.

Dr Imlach is also an epidemiologist and researcher and is leading the analysis of the data.

“We had 530 people complete our survey, which was the first comprehensive online survey ever run in New Zealand,” Fiona says.

“With migraine estimated to affect 642,000 people in New Zealand and the fourth largest cause of disability in this country, research into the reality and challenges of living with migraine was well overdue.”

From reports already published, the survey has identified many of the challenges people living with migraine face, including:

• Only 17% of respondents reported no work-related difficulties due to migraine; one third reported working full time but not working at their best; 14% reported they were unable to work.
• Seven out of ten respondents reported feeling judged or misunderstood because of migraine disease in the workplace.
• A high 42% of respondents said they sometimes, often or always felt like they were judged or misunderstood because of migraine disease by health professionals, with some reporting being treated as ‘drug seekers’ and that the symptoms of migraine weren’t recognised as disabling.
• Over half of respondents had been unable to see a neurologist, despite wanting to (most referrals for migraine to a neurologist are turned down in the public health system and most migraine patients have to see a neurologist privately).
• The biggest barriers for people unable to see a health professional for migraine were long waiting times, the expense and because they were unable to get or declined an appointment.

The charity also provided an opportunity for respondents to describe their experience of living with migraine in their own words, which will be shared in the series of reports. These voices of people with migraine paint the true disability of migraine disease and the daily challenges people have living with a neurological condition.

Next steps

Migraine Foundation Aotearoa New Zealand is continuing to write and release key insight reports from the survey, which can be found on their website here: https://www.migrainefoundation.org.nz/survey.

The charity has already used some of the findings to support their application to Pharmac to fund Emgality (galcanezumab), a new, migraine-specific medication currently funded in many other OECD countries.

The reports also support ongoing efforts to raise awareness of the impact of migraine disease, advocate for improved access to treatments and health professionals, support people with migraine and their carers and help improve the migraine research gap in Aotearoa.

Migraine Foundation hopes the survey results will help fill a gap in New Zealand migraine research and highlight the need for improved services for people with migraine.

Find out more about Migraine Foundation by visiting its website: migrainefoundation.org.nz.

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