Will your election
vote be a vote
for migraine?

Access to safe and effective treatment is a key challenge for people with migraine in NZ. This is for both acute treatment of migraine attacks (treating migraine symptoms when they arise) and for preventive treatment of migraine (regular medication taken to stop attacks occurring). Our focus is access to new migraine-specific preventive medications in this election cycle, as this is an issue that politicians have direct power to influence.

Two new classes of migraine preventive medication have been developed specifically for migraine, anti-CGRP monoclonal antibodies and gepants. These medications target calcitonin gene-related peptide (CGRP), a small protein found in the nervous system involved in the initiation and prolongation of migraine attacks.

There are several reasons for wanting funded access to these new preventive medications. All other migraine preventives are medications developed for other conditions, such as antiepileptics, beta blockers and other antihypertensives, and antidepressants, and found co-incidentally to have some efficacy in treating migraine. These non-specific preventive medications are poorly tolerated and poorly adhered to because they don’t work for many people and can cause significant side effects. More and better options are needed. From a recent systematic review, CGRP medications outperformed other drugs used for migraine prevention in both safety and effectiveness.

Four CGRP monoclonal antibodies are available internationally for migraine prevention and three have been approved by Medsafe in NZ. However, only erenumab (Aimovig) and galcanezumab (Emgality) are available here. Applications to fund both of them are with Pharmac, caught up in a protracted review process – one of them for over two and a half years without a final assessment in sight (far beyond the average of 15.3 months advertised on Pharmac’s website). Medsafe has recommended one gepant medication atogepant (Qulipta) be added to the New Zealand Medicines Schedule. A recommendation by Medsafe is the first step for medication access in New Zealand, then an application can be made to Pharmac for funding. Three other gepants are available internationally.

Even if these medicines are approved for funding, there are already over a hundred medications on Pharmac’s ‘priority lists’ and medications sit on this list for an average of six years (and counting).

The budget for medicines dispensed at community pharmacies, when adjusted for general inflation and population growth, has been shrinking, from $605 million in 2011 to $423 million in 2021. If this continues, the chance that any new migraine medications are funded in NZ also diminishes. Only people who can afford to pay for them out-of-pocket will benefit.

Our questions to politicians and political parties

• What will you do about the long list of medications Pharmac has approved for funding but aren’t funded because of an inadequate pharmaceutical budget?
• Will you increase the budget for community medicines, to be in line with inflation and population growth?
• Will you commit to improving New Zealand’s access to modern medicines, so we no longer rank last out of 20 comparable countries, behind Hungary, Estonia, Lithuania, Mexico, Latvia, and way behind countries we like to compare ourselves to (Australia, the United Kingdom and Canada)?
• Will you hold Pharmac to account for long delays in assessment of funding applications and introduce expected response times (as is current practice for review of Health and Disability Ethics Committee applications)?

Because migraine is such a common disease and the treatments are well established, most people with migraine should be able to be managed in the community, by primary care. Timely referral to neurology (see priority 3) is needed where the diagnosis is in doubt, where there are red flags for secondary headache causes (e.g. brain tumour, intracranial hypertension) or with severe, refractory migraine.

However, not all primary care providers (PCPs) are sufficiently knowledgeable or confident with both the diagnosis and treatment of migraine. Training and education on migraine and headache at undergraduate and specialist training level is limited, especially relative to the number of people a PCP would be expected to manage in their practice. From international research, many people with migraine do not receive a diagnosis or appropriate treatment. Migraine is commonly misdiagnosed as sinus headache or tension headache, but we don’t have data on the extent of misdiagnosis of migraine in NZ.

From a survey of people with migraine in NZ in 2022, over a third of respondents rated their GP’s knowledge about migraine as only fair or poor, showing clear room for improvement. Also, people were having to wait or could not access their GP. The short appointment times in primary care are another barrier to appropriate diagnosis and treatment, as a thorough initial assessment of a headache complaint often requires longer than 10-15 minutes.

There’s also the issue of migraine stigma. For many reasons, migraine is a stigmatised disease, contributing to under-diagnosis, under-treatment and under-funding of research. Health professionals can hold stigmatising attitudes towards migraine, either through lack of understanding of migraine as a neurological disease that is more than ‘just a headache’ that can be treated with simple analgesia, or through prejudicial beliefs about migraine being associated with personality types, weak character and malingering. In the 2022 Migraine in Aotearoa NZ survey, 14% of respondents always or often felt judged or misunderstood by health professionals because of migraine and an additional 33% sometimes felt this way.

Our questions to politicians and political parties

• Will you ensure the training and education of primary care providers includes how to appropriately diagnose and treat migraine, including treatment with new migraine medications?
• Will you support initiatives to improve the understanding of migraine disease amongst health professionals and reduce stigma for this and other stigmatised conditions?
• Will you provide funding for longer primary care appointments for initial headache assessments and people with chronic and disabling migraine?

Many people in the migraine community experience difficulties in seeing a neurologist or other specialist for migraine, particularly in the public health system. This means that unless people with migraine have private health insurance or can pay for a private consultation, they can’t access specialist care.

There are also only four headache specialists in NZ – these are neurologists with particular interest and training in headache management. In comparison, Australia has 72 or ~1:360,000 people; NZ has 1:1,250,000). The lack of headache specialists or other health professionals with an interest in migraine means people in NZ don’t have nationwide access to headache clinics, as in countries such as the UK and Canada, and have limited access to evidence-based, standard care treatments delivered by specialists, such as Onabotulinumtoxin A (Botox) injections and occipital nerve injections.

The neurology workforce in NZ has been static at around 100 people for the last several years. We don’t have data on how many people are training to be neurologists.

Regardless of the current shortfall, we need more neurologists in the future as the population ages and more people develop neurological conditions associated with ageing that need specialist care.

Our question to politicians and political parties

• What are you doing to increase the health workforce in specialties like neurology, where demand is greater than supply and is predicted to increase in the coming decades?

Migraine is the fourth highest cause of disability in NZ in terms of years of healthy life lost to disability, similar to depression. This estimate from the Global Burden doesn’t include data by ethnicity, so we have no information on the burden of migraine in Māori and Pacific.

Despite the prevalence and burden of migraine disease, there is gross underfunding of migraine research relative to its burden. In NZ, the Health Research Council has only ever funded one project relevant to migraine and from the Neurological Foundation’s 50 year anniversary in 2021, only $147,000 had been allocated to a combination of migraine, headache and tinnitus research in 50 years, from a total funding pool of nearly $52 million.

Essential information we need answers for in New Zealand

• How many people have migraine but have not been diagnosed by a health professional.
• Prevalence of high frequency episodic and chronic migraine (the most disabling forms of migraine).
• What treatments people are using for migraine disease.
• How many people are being prescribed inappropriate medication (opioids being the greatest concern).
• How many people not being appropriately prescribed medication (e.g. not accessing triptans or being trialed on preventive medication).
• Specific impacts on employment, education, social and family life and impact on the economy (in Australia, the cost of migraine in 2018 was estimated at nearly AU$36 billion).
• How many people are unable to get support for living with migraine, despite migraine being a significant cause of disability.
• Level of knowledge and awareness of migraine in general society, health professionals, workplaces.

We have attempted to fill some of these gaps with our 2022 online survey of people with migraine in NZ. However, we’re not resourced to regularly repeat such a survey or even analyse it to its full potential. Dedicated funding and ongoing research into migraine in NZ is needed.

Our questions to politicians and political parties

• What will you do to elevate migraine as a priority condition for health research and policy, to address the significant underfunding and under-resourcing over decades (and globally)?
• Given that migraine causes a similar level of disability as depression and has a similar problem with stigmatisation, would you commit resources to raise awareness and counter the stigma of migraine, as has been done for depression
• Do you acknowledge migraine as a disability?