And the importance of having a charity like ours advocating for medications
Migraine Foundation Aotearoa New Zealand welcomes the Government’s announcement on Monday of a $604 million boost to Pharmac’s budget over the next four years.
In early June, Pharmac added three migraine-specific preventive medications – galcanezumab (Emgality), erenumab (Aimovig) and atogepant (Aquipta) – to its Options for Investment list, Pharmac’s ‘wish-list’ of medications it would fund if it had the money.
So does this extra funding mean these medications will now be funded?
At this stage, we don’t know. On Monday Pharmac published a media release stating “about 175,000 more people will receive the medicines they need within the first year. The next step for Pharmac involves working through the medicines on its Options for Investment list to determine which medicines to progress. It will then begin negotiations with suppliers, and consulting publicly.”
The Government announced that seven new cancer medications are included in the package (not the 13 it had previously indicated) and Pharmac has published on its website:
“As of now, Pharmac estimates that the additional funding will cover approximately:
- 26 cancer medicines for a number of cancer types, including thyroid, bowel, breast, bladder, lung, head and neck, prostate, liver, ovarian, kidney and four different blood cancers. This includes treatments covering all of the cancer types covered by the list of 13 cancer treatments proposed previously plus other types not previously included (such as blood cancers).
- 28 other medicines that will include medicines for a wide range of conditions including infections, respiratory conditions, osteoporosis, sexual health, dermatology, inflammatory conditions, and mental health.
This list is subject to change as new medicines are being developed all of the time and Pharmac considers the best available clinical evidence when assessing medicines for funding.”
Given Pharmac has stated about 175,000 people will receive the medications they need within the first year, it’s unclear if it has already decided which medications it will fund. In the same statement, it indicated that it will seek public consultation. We will seek to gain further clarification and we’ll continue to engage with Pharmac and advocate for the funding of migraine medications.
But we need your support.
Because of our advocacy efforts, the migraine-specific medications were added to Pharmac’s Options for Investment list just weeks before this funding boost was announced. Our charity continues to be volunteer run, and we’ve invested hundreds of hours to this advocacy work, including self-funded travel. The timeline of our medication access advocacy work includes:
April 2022: We submitted feedback to the Pharmacology and Therapeutics Advisory Committee (PTAC) on its decision regarding the funding of erenumb (Aimovig). We also provided recommendations about some of the issues it raised in its decision that we felt were incorrect. Read our submission
22 August – 7 October 2022: We conducted our Migraine in Aotearoa New Zealand (MiANZ) 2022 survey. With a lack of NZ-specific data we knew we had to conduct our own research. This was a comprehensive survey and the data is vital for many aspects of our advocacy work and has also been used for three research papers.
25 November 2022: We submitted our consumer application to Pharmac to fund Emgality for chronic migraine. This submission included the latest research and evidence and took many hours to pull together. Thanks to our MiANZ survey we could support our application with NZ specific figures. Although our initial application was for chronic migraine, we soon lodged an amendment and requested funding for both chronic and episodic migraine.
29 November 2022: We launched an Emgality Advocacy Toolkit to support our application to Pharmac for Emgality. This included the development of downloadable key messages focused around Pharmac’s four Factors for Consideration for funding decisions, templates to email Pharmac and local MPs, creating videos, social media posts and much more.
December 2022: We provided further feedback to PTAC following its review of the erenumab (Aimovig) application on 18 August 2022. Read our submission. To note, our recommendations such as urging the Neurological Advisory Committee to meet as soon as possible in 2023 (its last meeting was October 2021), inviting headache experts to the meeting to provide their expertise and consider both Emgality and Aimovig for both episodic and chronic migraine at the same time, were successful.
20 January 2023: We provided feedback to Pharmac about its response to our feedback in April, and general feedback on its processes for dealing with CGRP applications, signed and supported by four New Zealand neurologists.
15 February 2023: We received a response from Pharmac Chief Medical Advisor David Hughes following our feedback about CGRPs and Pharmac processes.
9 August 2023: Co-founders Sarah, Fiona and Suzanne, and neurologists Dr Rosamund Hill and Dr Desiree Fernandez attended a meeting with Pharmac about our application to fund Emgality. Suzanne flew to Wellington for the meeting to join Fiona in person, Sarah, Rosamund and Desiree attended virtually. Aimovig, Emgality and atogepant are scheduled to be discussed at the upcoming Neurological Advisory Committee meeting on 19 September.
August – September 2023: We put out a call out for people’s stories about living with migraine and also those who are self-funding Emgality and/or Aimovig. From the 35 stories we received we created a 100+ page graphically designed book that lays bare the realities of living with migraine disease. This book was given to Pharmac and also the Neurological Advisory Committee.
19 September 2023: Suzanne flew to Wellington, and together with Fiona presented at Pharmac’s Neurological Advisory Committee meeting in person about the lived experience of migraine in New Zealand. Dr Desiree Fernandez joined virtually. The committee was there to discuss neurological medications, including Emgality, Aimovig and atogepant. View our presentation
22 December 2024: We were informed that our advocacy efforts at the Neurological Advisory Committee meeting were successful and the committee has recommended erenumab, galcanezumab and atogepant be funded in New Zealand with the highest priority. Pharmac now considers the recommendation.
29–30 April 2024: Suzanne flew to Wellington to join Fiona at the inaugural Valuing Life, New Zealand Medicine Access Summit held at Parliament. This was an opportunity to hear from patients affected by the lack of access to modern medicines in NZ, international guest speakers about the need to include broader societal perspectives into the economic analysis of new medicines and networking with other organisations and individuals.
30 May 2024: Medsafe approved atogepant (Aquipta) to be added to the New Zealand Medicines Schedule. Atogepant is one of the first medications in New Zealand to be assessed by Medsafe and Pharmac concurrently.
6 June 2024: Cause for celebration of our advocacy efforts. Pharmac listened to us. Galcanezumab (Emgality), erenumab (Aimovig) and atogepant (Aquipta) were listed on Pharmac’s Options for Investment list for both episodic and chronic migraine.
And on 24 June 2024, migraine medications have a chance of being funded with the Government’s announcement of increased Pharmac funding.
We – Sarah, Fiona and Suzanne – founded Migraine Foundation Aotearoa New Zealand in April 2022. We were frustrated by the limited access to migraine-specific medications and migraine-specific care, unfunded treatment options, lack of public knowledge and awareness about the impact of migraine disease, outdated health professional guidelines and limited access to neurologists for many New Zealanders.
The passion and drive still continues, but the demands on our time and the expectations of the migraine community have grown. All of our advocacy work, the newsletters we send each month, the website content we write, our 2022 survey, our research papers we publish, our submissions, the meetings we attend, the conferences we attend and present at, the emails and queries we answer, the webinars we present, the community meetups we’ve put on, everything we’ve achieved for people with migraine in New Zealand over the past 2 years, has been done in our own time, as volunteers and as people living with migraine.
If any of our work has made a positive impact on your life, and you’re in the position to do so, please consider supporting us by either becoming a member or donating. If we weren’t here, the migraine medications that now have a chance at being funded wouldn’t be on Pharmac’s wish list, and there wouldn’t be a New Zealand migraine charity championing the voice of the 753,000 people in New Zealand with migraine. If you’re already a member, thank you. Your support is incredible and really does make an impact.
We love what we do, and we’re not going anywhere but we need support from our community to ensure we’re sustainable long-term.
