More migraine data needed in New Zealand

New Zealand has a migraine data issue. The issue is the lack of data on migraine in New Zealand.

We rely on estimates from the international Global Burden of Disease study to give us an idea of how common migraine is, because we don’t have up-to-date national statistics.

Data from the New Zealand Health Survey

We do have a way of collecting these statistics, through the New Zealand Health Survey, a large nationwide survey run by the Ministry of Health that asks about health conditions, risk factors and access to health care. This survey asked questions about migraine in 2006/07 and 2013/14. However, the results from 2006/07 are considered flawed due to issues with how the survey was conducted, and the results from 2013/14 have never been published.

We submitted an application to the Ministry of Health to re-instate questions about migraine in the 2023/24 survey but we’re not sure whether this will be accepted. Thank you to the Neurological Foundation, the New Zealand Pain Society, Dr Calvin Chan, Professor Debbie Hay and Dr Desiree Fernandez for supporting our submission.

We’ve also requested the 2013/14 results and permission to make these public, although they’re now almost a decade out of date.

Why do we need more data?

Although the Global Burden of Disease estimates give us information about the prevalence and impact of migraine by age and sex, they don’t provide data on ethnicity. We need to know about the burden of migraine in Māori and Pacific people, especially as international research finds that non-white people with migraine are less likely to access health care, less likely to receive a migraine diagnosis and less likely to receive appropriate treatment.

We also need to know more about how people with migraine in New Zealand are managing the disease. Again, international research suggests that many people with migraine are not prescribed migraine-specific medication for acute attacks and many people who may benefit from preventive medication are not taking it.

Access to new preventive medications

The information on preventive medication is particularly critical. None of the currently funded migraine preventives in New Zealand were specifically developed for migraine disease. They only work about half of the time and even if they do work, they often have such significant side effects that people can’t stay on them.

New preventive medications that target one of the proteins involved in precipitating a migraine attack have been developed that have fewer side effects than existing medications. However, these are not funded in New Zealand. Without robust data on migraine in New Zealand, it is difficult to convince funders and policy makers that this is a high priority disease, that deserves more investment, and that many people will benefit from having access to new and safer treatments.

What can we do?

We will keep advocating for better migraine data from the Ministry of Health. In the meantime, we’re undertaking our own survey to collect information on migraine in New Zealand, which you can participate in here. We’ll use this information in our submission to Pharmac for funding of one of the new preventive medications (Emgality) and in other activities we do to raise awareness and support people with migraine disease in New Zealand.

(Survey now closed)