New Foundation Launched For People With Migraine

Migraine Foundation Aotearoa New Zealand is a new not-for-profit supporting people living with migraine.

Migraine is estimated to affect 642,000 people in New Zealand and is the fourth largest cause of disability in this country. Yet despite its prevalence and burden, migraine is often misunderstood as ‘just a headache’ and is under-funded, under-researched and under-diagnosed.

Migraine Foundation Aotearoa New Zealand was launched in April 2022, to provide a voice for people with migraine in New Zealand, and is voluntarily managed by its three co-founders.

“Migraine disease is more common than asthma, epilepsy and diabetes combined, yet there’s not as much awareness around how disabling migraine is, and many people just suffer in silence or think there’s not much they can do to help themselves,” Sarah Cahill, Migraine Foundation Aotearoa New Zealand co-founder says.

“Many New Zealanders also find it challenging to access specialist care through the public health system, or to even receive a proper diagnosis. Migraine affects everyone differently, and because there’s no cure, people often spend years, and thousands of dollars on trying lots of different treatment options. It can be exhausting, both financially and emotionally,” Sarah says.

Over the past decade, new treatment options, including migraine-specific preventive medications, Botox for chronic migraine, neuromodulator devices and a wider range of medications for acute attacks, offer new hope for people with migraine.

“Unfortunately, many of the new treatment options aren’t available in New Zealand. Part of our work is to advocate for better access for people in New Zealand, while also providing reliable information so people can better manage their migraine attacks,” Sarah says.

“Migraine is also a gendered condition, and affects three times as many women as men and is most common in people of working age. Its burden isn’t just felt by the individual, it also carries a huge economic and social cost that affects all of society.”

There is no reliable data on the prevalence of migraine in Māori and Pacific people in New Zealand. The last time the Ministry of Health published statistics on the prevalence of migraine was in 2006/07, from the New Zealand Health Survey. These results suggested that migraine was about as common in Māori as non-Māori. The results for Pacific people weren’t clear – the prevalence may be lower, but this could be due to how the questions were asked.

“The previous questions from the New Zealand Health Survey asked people whether they had migraine diagnosed by a doctor,” Dr Fiona Imlach, co-founder, says.

“But we know that Māori and Pacific people have more barriers to getting to a doctor and might not be getting diagnosed. Studies from the US have shown that indigenous, black and people of colour are not only less likely to seek medical help for headaches, they’re less likely to get a diagnosis and get appropriate treatment,” Fiona says.

The Migraine Foundation Aotearoa New Zealand would like to see more research to understand the impact of migraine, particularly in Māori and Pacific people.

“We need better questions about migraine being asked in the New Zealand Health Survey. We need to understand the social and economic burden of migraine in New Zealand and to make sure all people with migraine have equitable access to existing and new migraine treatments,” Fiona says.

The foundation’s work programme includes supporting more research as well as increasing awareness about migraine. The Migraine Foundation Aotearoa New Zealand website has a wealth of information about the migraine landscape in New Zealand. This includes information about medications available in New Zealand, non-medication treatment options, the latest news and all about different types of migraine.

The foundation also runs a private Facebook support group, publishes a monthly newsletter and hosts in-person meet ups.

Visit migrainefoundation.org.nz for more information.

About migraine

Migraine is more than ‘just a headache’. Migraine is a disabling, neurological condition and is largely genetic. Worldwide it affects 1 in 7 people, and around 7% of those with migraine have chronic migraine, the most debilitating form of the disease, classified as having at least 15 headache days a month, with migraine symptoms on 8 or more of those days.

Migraine usually presents as a severe headache affecting one side of the head, often associated with nausea, vomiting and sensitivity to light and sound. However, migraine is a whole-body disease that can also cause fatigue, dizziness, difficulty speaking or finding words, visual disturbances, neck and shoulder pain, numbness and tingling in the face and limbs, extreme sensitivity to touch, brain fog and more.

Migraine affects women, men and children. Migraine can affect people's ability to work, study, progress in their careers and engage in social activities and family life.

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