Migraine sufferers face battle for funding for new meds in NZ

There's both good and bad news for the estimated 642,000 New Zealanders who suffer from the complex neurological disease known as migraine.

The good news? Two new migraine-preventative medications have arrived in New Zealand.

The bad news? Neither are currently funded by the Government.

Dr Fiona Imlach, co-founder of the Migraine Foundation Aotearoa New Zealand, says migraines should be taken more seriously.

She says migraine has been a neglected disease, partly because it’s been feminised and associated with being weak.

“It's a neurological disease. It's in the same class as epilepsy and diabetes. We want to take the stigma away and raise awareness of migraine as a legitimate problem that needs more investment,” said Dr Imlach.

“There is little migraine data available in New Zealand. The last migraine statistics published from the Ministry of Health was from the 2006/7 health survey,” said Dr Imlach.

She said migraine was a disease that went under the radar.

Not having enough updated data made it hard for foundation to request funding from Pharmac and the Ministry of Health, she says.

“We need more awareness. They’ll say, well, what’s the problem? And we’ll say, we don’t know, because you haven’t done the research,” said Dr Imlach.

The foundation has released an online survey through migraine sufferers are invited to share their experiences across healthcare, medication use, stigma, and the impact migraines have had on their life.

“If we get 500 responses, that will be enough for us to do some analysis, particularly around chronic migraine. The more we can get the better,” said Dr Imlach.

Results from the survey will be used in an application form to Pharmac for funding of one of the new preventative migraine medications.

“We're trying to document the need and the burden of migraine and our community,” said Dr Imlach.

A variety of acute and preventative medications that can treat migraine.are available in New Zealand.

However, many sufferers are left with side effects and a preventative that doesn’t work.

“They get side effects because they were never intended to be used as a migraine prevention. What we are wanting are these new preventive drugs, which were developed and designed to target the migraine brain and are much safer, more tolerable and people can take them more effectively,” said Dr Imlach.

The two new migraine prevention drugs are calcitonin gene-related peptide (CGRP) monoclonal antibody medications and taken in the form of an injection.

There are four of this class of drugs in the world. In New Zealand we now have two, but it comes at a cost.

Aimovig

Aimovig (erenumab) is currently available on prescription, but as the drug isn’t funded, it costs $678 a month (per 70mg injection) or $1356 a month (per 140mg injection).

Aimovig is only available through certain pharmacies. Pharmac is considering funding it at a low-priority level.

Dr Imlach says she does not think Aimovig will be funded due to this priority rating.

Emgality

Emgality (galcanezumab) has recently arrived in New Zealand and is currently funded in Australia.

It is also not funded but a price has not yet been established. It is thought it will be cheaper price than Aimovig.

Emgality is the drug that the Migraine Foundation Aotearoa New Zealand is applying for funding through the results of their survey.

Dr Imlach said she hoped the survey responses would help bump the drug higher up the priority list.

“There’s evidence that they work and they’re effective. They’re safer than other options that we have here. If this drug isn’t funded, this will increase inequities in New Zealand because people can't afford to pay for them. But there is a need,” said Dr Imlach.

The Migraine Foundation Aotearoa New Zealand was launched in early 2022 and is the only registered charity in New Zeqaland supporting people living with migraine disease.

Celia Whitley - journalism student and radio host. Photo: Alex Cairns

Migraine - a personal story

COMMENT: TWN reporter Celia Whitley shares her own experiences of the debilitating condition

I was 9 years old when I got my first migraine. Nowadays, if I go a couple weeks without an attack, I’m going through a "good patch".

I’m one of several in my family who suffer from them, including my mother, brother, a few cousins and my grandfather. All of us have suffered in our own way. My mother, for example, is unable to work full time due to the debilitation and frequency of her migraines but she often tries to push through.

We’re similar in the way we mostly try to keep living our lives when we’ve got one, often with no one around us even knowing. It’s hard to compare my migraines to anyone else’s, as everyone experiences them differently.

I hate the thought of migraines running my life. Migraine has prevented me from attending days of school, work, and events.I’ve often had to leave social situations early because I’ve got a sudden attack. I’ve been lucky with my current and past managers, who have shown empathy and understanding when I must leave work early or take a sick day. However, I still feel guilty.

I resonate with Dr Fiona Imlach’s message about migraine being a stigmatised and feminised disease. My migraines often make me feel embarrassed. If I have to get my acute medication out in front of others, which is the medication I take when I can feel a migraine coming on, I try hide it as best as I can.

I’m quite often told, “You get a lot of headaches,”, or left with the response, “You’ve got a headache again?”. I know my friends and family mean it in a caring way, but often it feels shameful.

It’s not like I haven’t tried to avoid them. Many other sufferers will have done the same; I’ve seen doctors, headache specialists, physios, chiropractors, optometrists, massage therapists, and a neurologist.

I’ve switched my diet up and eat mostly plant based, try to keep my stress levels to a minimum with mindfulness and yoga, work out regularly and avoid certain alcohols.

I try to avoid places with strong smells, don’t eat foods with intense flavours, and try to keep my body temperature low. Most importantly, I try and ensure I get enough sleep.

Sleep is a big trigger for me. I host a radio show on Saturday mornings, when I need to get up a lot earlier than I usually do. Sometimes if I don’t have enough sleep, I will get a migraine attack while at work. There have been a couple of occasions where I have had to lie down on the floor under the studio desk, feeling exhausted and nauseous with a pounding headache, in the hopes that my acute medication will work before we go live.

The news of a new preventative medication thrills me. Earlier this year, I went on a preventative medication for the first time. Unlike what I have been prescribed now, the new medication has been created purposely for the prevention of migraines. Unfortunately, like many other Kiwis in my position, I can’t afford to spend $700 a month.