Trikafta is a breakthrough treatment widely heralded as having the potential to turn cystic fibrosis from a life-threatening condition, to a manageable condition. It's currently not funded in New Zealand. Help us campaign for this treatment - Kiwis with CF simply can't wait any longer.
In early February Patrick Gower presented a three-part documentary on Newshub about Trikafta. He featured three Kiwis with CF who have been able to privately access Trikafta and who have experienced remarkable improvements in their health and well-being since taking the drug.
Patrick’s documentary received widespread coverage and raised awareness of CF and the urgent need for Trikafta to be publicly funded in New Zealand.
We need to make sure that this awareness carries through to a decision to approve and fund Trikafta for Kiwis with CF as soon as possible. To do this, we need the CF community to keep the pressure up.
We know it takes courage to share such personal stories, but having CF is nothing to be ashamed of. These personal stories make real the life-long burden that those with CF carry, and how public funding of Trikafta would help to lift that burden.
You can find your local MP and how to contact them by going to:
https://www.govt.nz/browse/engaging-with-government/members-of-parliament/
This webpage provides information on:
Email your MP and ask for an urgent meeting. Below is a suggested mail to use:
In early February Patrick Gower presented a three-part documentary on Newshub about a miracle drug called Trikafta which treats the underlying cause of cystic fibrosis (CF). The results have been remarkable and Trikafta not only saves lives but dramatically improves the quality of lives of Kiwis living with CF.
I/my child/my family member suffer from this terrible condition and my/their health is declining. As my local MP, I would like to have half an hour of your time as this urgent and it really is a case of every day counting.
Add brief personal plea.
Is there a time in the next week that would suit for me to meet with you?
Explain what life is like with CF, the challenges you and your family face, and how Trikafta to could help to change that for the better. Make clear that Kiwis with CF can’t wait any longer for Trikafta.
While your personal story and how Trikafta would help are the most important things to get across, we have put together some key messages you may want to use to help with your conversation. Download the Trikafta key messages, or jump to the key messages at the bottom of the page.
And, if you can, get a photo with your MP - share it with us and post it on social media.
If you’re not able to meet your local MP in person, you can email or write to them instead. Again, getting across your personal story and how Trikafta would help are the most important things to achieve.
To help with drafting your email or letter, we have put together some information about CF and its impacts, and what benefits Trikafta would bring under 'information for email/letter to MPs'.
We are asking all MPs to support the campaign to have Trikafta publicly funded now so that the immediate and significant benefits for people with CF, their families and the NZ health system can be realised as soon as possible. Kiwis with CF can’t wait any longer.
Trikafta for Kiwis has a petition to the Health Select Committee seeking public funding for Trikafta. More than 26,000 people have already signed the petition, but we need as many signatures as possible before the petition closes on 30 September 2021.
You can help by sending the link to the petition to everyone you know and asking them to sign – family, friends, iwi, work colleagues, teams, clubs and anyone else you can think of.
Sign the petition for Trikafta
Try to get your personal story in the local media. Coverage in local media can help to raise awareness that CF is something that can happen to anyone.
To help with information and background on CF and Trikafta for local media, you can use the key messages. Make clear that Kiwis with CF can’t wait any longer for Trikafta.
Many people have already posted their stories on social media and we thank them for doing so. Now we need as many people as possible to share their stories – and make clear that Kiwis with CF can’t wait any longer for Trikafta.
In January 2021 CFNZ sent a letter to all Members of Parliament urging their support of the public funding of Trikafta and a substantial increase in public funding for medicines and improvements to speed up access to life-saving medications. Read the letter.
We'd love for you to do the same. Here are a few pointers.
Cystic fibrosis (CF) is a serious and ultimately terminal inherited genetic condition affecting more than 540 people in New Zealand (NZ). Around 1 in 25 New Zealanders carry the faulty gene that causes CF and 12 babies were born with CF in New Zealand in 2019. CF causes the body to produce thick sticky mucus which damages the lungs, digestive system, and other parts of the body. CF imposes a heavy burden throughout life with significant quality of life, social and economic impacts on people with CF, their families, and communities.
Current treatment for CF involves a demanding and time-consuming daily regime of lung clearance and medication, together with regular medical check-ups and, over time, increasingly frequent hospitalisations. Current treatments for the majority of people with CF in NZ treat only CF symptoms and not the underlying cause of the condition. For a number of those with CF, a lung transplant may be the only remaining option.
CF cuts short the lives of those with condition, with only half of those with CF reaching 31 years of age.
CF modulators manufactured by Vertex Pharmaceuticals, such as Kalydeco and Trikafta, provide the first treatments to address the underlying cause of CF. Kalydeco is funded in NZ but only works for approximately 5% of people with CF – it has provided significant benefits for the 30+ eligible people in NZ.
Trikafta works for approximately 90% of those with CF and provides immediate and significant benefits. These benefits include increased lung function and weight gain, reduced treatment burden, improved quality of life and increased life expectancy. Several New Zealanders are self-funding Trikafta and, as a result, have experienced life-changing improvements in their health, well-being, and ability to fully participate in life.
Trikafta not only has benefits to those with CF and their families. Trikafta would also provide immediate and longer-term benefits for the New Zealand health system, though reduced hospitalisations, decreased treatment burden, and deferred or avoided lung transplants.
We understand that MPS and Ministers do not make decisions about which medicines to fund in New Zealand.
We are aware that Pharmac makes those decisions, guided by the expectations set and budget approved by the Minister of Health.
CFNZ has asked the Minister of Health to ensure that, when he is approving funding and setting expectations for the coming year, he ensures that Pharmac has the support it needs to approve life-changing medicines such as Trikafta as quickly as possible.
Keep an eye on our advocacy timeline to track how this campaign is progressing.
We'd love to know just how many emails or letters are being sent to MPs - please let us know by emailing comms@cfnz.org.nz or by copying us into the email. If you get a photo with your MP, please send this too!
Download the key messages as a PDF