Campaign for Trikafta

KIWIS WITH CYSTIC FIBROSIS CAN’T WAIT ANY LONGER

 

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.

 

Help keep the pressure up!

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. 

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How you can help


You can help by:
  • Meeting your local Member of Parliament (MP)
  • Getting the Trikafta petition out
  • Going to your local media
  • Posting your story.

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.  

Meeting your local MP


How do I contact my local MP?

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:

  • Finding your electorate
  • Members of Parliament; and
  • Contacting an MP.

How do I arrange a meeting?

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?

What do I say when I meet my MP? 

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.

Emailing or writing to your local MP

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'.

What do we want MPs to do?

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 petition

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 1 June 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

Going to your local media


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.


Post your story

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.

Information for email/letter to MPs

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.



What is CF?

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 in NZ

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.


Trikafta

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.


Pharmac

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.

 

Campaign tracker

 

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!

Trikafta key messages

Kiwis with cystic fibrosis can’t wait any longer for Trikafta

  • Cystic fibrosis (CF) is a serious and ultimately terminal genetic condition which
    affects around 540 people in NZ.

  • CF causes the body to produce thick, sticky mucus which damages the lungs,
    digestive system, liver and other parts of the body.

  • CF imposes a heavy burden, with significant quality of life, social and economic
    impacts on people with CF, their families and communities.

  • People with CF endure a demanding and time-consuming daily regime of lung
    clearance and medication, together with regular medical check-ups and, over time,
    increasingly frequent hospitalisations. For a number of those with CF, a lung
    transplant may be the only remaining option.

  • CF cuts short the lives of those with the condition. Only half of those with CF reach
    31 years of age.

  • Current treatments for the majority of people with CF in NZ treat only CF symptoms
    and not the underlying cause of the condition.

  • CF modulators, 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 around 90% of those with CF.

  • Trikafta provides for significant and immediate improvements for those with CF by
    increasing lung function and weight gain, reducing the burden of treatment,
    improving quality of life, and increasing life expectancy.

  • Trikafta is now available to CF patients in the UK, Republic of Ireland, the USA,
    Denmark, Germany and Switzerland. It is currently being considered for funding in
    Australia, with a decision to be announced in April 2021.

  • 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 can also provide immediate and longer-term benefits for the NZ health
    system, through reduced hospitalisations, decreased treatment burden, and
    deferred lung transplants.

  • Trikafta needs to be funded in NZ now to ensure the significant benefits to 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.

 

 

Download the key messages as a PDF