Advocating for funding of Emgality (galcanezumab)
Advocacy toolkit to support funding of Emgality (galcanezumab) in Aotearoa New Zealand
In November 2022, Migraine Foundation Aotearoa New Zealand submitted a consumer application to Pharmac requesting funding of Emgality (galcanezumab). This toolkit is designed to help you support our application and raise awareness of migraine and the need for improved access to modern migraine medications.
Thank you to Cystic Fibrosis New Zealand for giving us permission to adapt its Kalydeco advocacy toolkit for our use.
About Emgality (galcanezumab)
Emgality (galcanezumab) is a medication specifically developed for migraine. It’s a calcitonin gene-related (CGRP) monoclonal antibody medications, given as a 4-weekly injection.
CGRP monoclonal antibodies are the first medications developed specifically to prevent migraine. Prior to their development, the only preventive medications used for migraine were medications developed for other conditions, such as depression, epilepsy and high blood pressure, that were found to be useful to prevent migraine.
CGRP monoclonal antibody medications are a significant development in migraine treatment. They’ve been found to be safe and effective, with fewer side effects than many other preventive migraine medications. They’re taken by injection either every 4 weeks or 3-monthly, depending on the medication.
CGRP monoclonal antibodies work by blocking a small protein called calcitonin gene-related peptide (CGRP). CGRP helps to transmit pain signals in the brain, ramp up inflammation and dilate blood vessels. The CGRP monoclonal antibodies bind to CGRP or to its receptor sites in the nervous system, to ‘switch off’ its ability to stimulate the cascade of events that lead to a migraine attack.
Accessing CGRP monoclonal antibodies in Aotearoa New Zealand
How a medication is approved and funded
Medicines need certain government approvals to become accessible in New Zealand.
First, Medsafe evaluates new medicines and recommends whether they’re safe to be used in New Zealand. Medsafe is part of the Ministry of Health. It’s responsible for the regulation of therapeutic products in New Zealand, but not for funding or purchasing medicines.
Unfunded medicines are usually expensive and inaccessible for many people.
Pharmac is the government organisation responsible for deciding which medicines will be publicly funded. Pharmac receives advice from the Pharmacology and Therapeutics Advisory Committee (PTAC) to help Pharmac make decisions about how to use its funds.
Pharmac receives about 85 applications each year to fund different medicines and related products. Find out more about Pharmac’s process here
Availability of CGRP monoclonal antibodies in New Zealand
Medsafe has approved three CGRP monoclonal antibody medications: Aimovig (erenumab), Emgality (galcanezumab) and Ajovy (fremanezumab). Aimovig and Emgality are available on prescription from your GP or neurologist. Ajovy is not yet available. Emgality became available in New Zealand in August 2022.
A consumer application was made to Pharmac to fund Aimovig in February 2021, before Migraine Foundation Aotearoa New Zealand was founded. In November 2021, PTAC recommended Aimovig be funded with low priority. You can read a summary of PTAC’s meeting and the feedback we submitted post their feedback here.
The funding of Aimovig is now under consideration by Pharmac, using its Factors for Consideration framework. The four factors for consideration are need, health benefits, costs and savings and suitability. Pharmac is not transparent about how much weight is given to each factor.
The issue with unfunded medications
Because Aimovig and Emgality are unfunded, they’re expensive and inaccessible for many whose lives could improve with these medications. People with migraine in Aotearoa New Zealand deserve funded access to preventive medications that are safe and effective.
Migraine Foundation Aotearoa New Zealand want Emgality funded in New Zealand. We submitted a consumer application to Pharmac in November 2022, requesting funding for people with migraine, who have not responded to three other preventive medications.
How you can help get Emgality funded
Public support for funding is crucial, as it helps to raise awareness of migraine and how people in New Zealand are missing out on migraine-specific medications.
Here's how you can help
- Show your support on social media
- Email Pharmac
- Meet with your local member of parliament (MP)
- Email your local or regional newspaper, or get in touch with a local reporter or media organisation
- Call your local talkback radio station
- Create a video
See below for more detailed information about how you can help.
Using contacts already in your network is always helpful to help spread the word.
Key Messages for the public funding of Emgality
Pharmac uses its four Factors for Consideration when making funding decisions: Health need, Health benefits, Costs and savings and Suitability. Our funding application is based around how Emgality addresses each factor, and so are our key messages.
Review our Key Messages about Emgality, choose the messages that resonate with you the most and use to help advocate.
Help us spread the word through Facebook, Twitter, Instagram and other social media you’re on. Which of our Key Messages resonates with you the most? Start talking about it on social media.
We would also love you to share your story on social media so that more people understand just how debilitating migraine is for people. You can do this:
- on your personal page
- by sending us an email and letting us know that you would like to share your story on our website
- by recording a short video and sharing it on social media (see information below).
Remember to tag us in your social media if you’d like us to share on our social media channels.
Join us on social media
When you follow us on social media and comment and share our post, you help us reach more people with migraine and raise awareness of migraine in Aotearoa New Zealand.
When emailing Pharmac, also cc in Dr Ayesha Verrall, Minister for Health, your local MP, Associate Health Ministers and The National Party Health and Associate Health spokespeople (names and email addresses in template letter).
You can find out who your MP is here
You can use our template letter (below) as a starting point. Personal stories are powerful, so if you have a story you would like to share it would be great to include it in your letter. If you don’t have a personal story to share, that's fine too.
Tips for writing to decision makers
Always be courteous: Remember you’re trying to influence their thinking, not alienate them. So use courteous language. Don’t be sarcastic, judgmental or question their motives.
Don’t get emotive: You feel strongly enough to write to them. That carries weight, but it will also make it important to understate rather than overstate. Don’t use exclamation marks, heavy underlining, italics or bold font. And don’t write words in capitals to make your point.
Keep to the point: Like all the rest of us, they're very busy people. They do want to know what you think on an issue but they don’t want to hear about several issues at the same time.
Keep it short: for the same reasons as keeping to the point.
State the purpose of the letter at the beginning. It’s helpful to give your letter a heading that sets out what the subject of the letter is about.
Meet with your local Member of Parliament
Meeting in person with your local MPs is one of the best ways you can advocate. It’s a good opportunity to share your story in person, and gives the MPs and their staff an opportunity to ask questions and have an in-depth conversation about the issues important to you.
Phone or email their local office (find them here) and organise a meeting time. Have your key messages clear in your mind before the meeting. The key messages above may help.
Talk about how migraine affects your life. Personal stories have the greatest impact and are a powerful way to get a message across.
If you’re not comfortable with an in-person meeting or able to attend one, that’s okay. Choose the advocacy option that works best for you, which might just be an email or phone call.
We have prepared a few tips to help you with in-person meetings.
Write a letter to your Member of Parliament
Writing a letter to your MP is an alternative if you can't meet your MP in person.
Find out more about writing to your Member of Parliament and some helpful tips here.
Write to your local newspaper, media organisation or online forum/blog
Contact your local newspaper or media organisation and ask if they’d be interested in writing about CGRP monoclonal antibodies and our application to Pharmac for Emgality funding and why it’s so important for people with migraine in New Zealand to have funded access.
Call your local talkback radio
Talkback radio is a good opportunity to get your point of view heard. Politicians listen to keep up-to-date with what the public are thinking or are concerned about.
When you ring you won’t go straight on air. Instead, you’ll speak with a producer who will want to know your name and what you want to say. If you want to stay anonymous then explain that to the producer and your reasons for wishing not to have your name given on air.
Create a video
They say if a picture is worth a thousand words then a video is worth a million. Making a short video is easier than you might think.
A great way to prepare for a video is to first draft a script, then use a teleprompter app to read it while you video. There are teleprompter apps available for both android and Apple phones and tablets. You just need to copy and paste your script into the app and read as you record.
If you’d like to be involved in other ways, or have any ideas to help advocate for Emgality, please email us: email@example.com.
And please subscribe to our newsletter to stay up to date with our advocacy work.