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Keep Bella Breathing - Trikafta, the Cystic Fibrosis (CF) Non -Funded 'Miracle Drug' cost $470k per year!!

  • All parties are meeting including Pharmac, Medsafe, CFNZ, two clinicians and Trikafta4kiwis!

      30 March 2021
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    Today is the day where we hope we will get one step closer to making Trikafta a reality for all kiwis living with CF. All parties are meeting including Pharmac, Medsafe, CFNZ, two clinicians and Trikafta4kiwis. There has been so much work done behind the scenes by so many passionate people who believe in what we are fighting for. Our girl has had 9 months living a life she had only ever dreamed of. This drug is a miracle. This drug is life saving. This drug is what our dear Sir Bob had wanted for so long. Fingers crossed the powers that be see what we know to be true.

      2 comments  |  Login to leave a comment
    • 30/03/2021 by Ian

      Thanks for the update....that's such awesome news 😃

    • 31/03/2021 by Ann

      I'm sending my thoughts.

      Standing by

      Your courage is inspirational.

  • The cystic fibrosis medicine that costs nearly $500,000 a year - and the global red tape that's strangling it

      2 February 2021

    As the fight for funding TRIKAFTA continues so does Bell's story. Bella has had a summer full of fun, family and friends. If it weren't for all the wonderful people who have supported this page and given money, Bella's summer would have looked quite different! Until Trikafta is funded, she still need's all the support she can get.

    We as a family are forever grateful to Paddy Gower and the power of his investigative journalism, he continues to push to reveal the TRUE story behind why drugs like Trikafta are so hard to fund here in Aotearoa.

    Patrick Gower and Newshub will be running a three-story series speaking to New Zealanders with cystic fibrosis who have been able to privately access Trikafta.

    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.

    You can watch the interviews on Newshub Live at 6pm on Three, from Tuesday (2nd Feb) to Thursday. Patrick will also be on The Project on Tuesday to discuss it.

      1 comment  |  Login to leave a comment
    • 02/02/2021 by Rosemary

      Keep the faith Bella, so lovely to see you looking so well x

  • Message from Alley ( Bella's Mum )

      11 October 2020
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    Today we say thank you to the generosity of so many friends family and complete strangers. Today my girl started her second three months of Trikafta made possible by all of you. We have been working on a documentary that will air later in the month that will show life with and without Trikafta. It has been hugely emotional but we hope will continue to keep Trikafta and all other life saving medications front and centre of those who make the decisions of who lives and who dies in this country.

      2 comments  |  Login to leave a comment
    • 12/10/2020 by Mike & Pam

      We hope your are doing well and wish you every success and good health for the years to come.

    • 13/10/2020 by Marianne

      Dear Alley,

      I am happy that your wonderful daughter can start her Trikafta medication; and I wish her well. I have seen Bella often at Kristin and was amazed about her kindness. She well deserves the support she receives.

      As Sarah wrote, cystic fibrosis is destroying Bella's lungs and she needs a lung transplant -- my question is, why was/is Bella not wearing a mask at school (not even after Auckland went from level 3 to level 2.5)? Wouldn't wearing a mask protect her further? I would be grateful for your answer.

      All the best for Bella and your family,

      Marianne

  • Bella comments on the recent Leadership Debate

      2 October 2020

    The time is now!

    The Trikafta campaign is heating up.

      1 comment  |  Login to leave a comment
    • 11/10/2020 by Natalie

      Fantastic Bella. Really encouraging that your struggle has been brought to the forefront of NZ's consciousness and the future is looking so hopeful. Keep pushing, you're doing such a great job.

  • Bella on RNZ - Sunday Programme with Jim Mora

      30 August 2020
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    Check out this link to hear Bella and Alley talking about how they are feeling since Bob's death. Also, where to now for Bella and the campaign for getting Trikafta Funded for the 500 + CF sufferers in Aotearoa/NZ.

    https://www.rnz.co.nz/audio/player?audio_id=2018761764

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  • Update from Bella

      21 August 2020

    Some words from Bella :-)

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  • Advocacy Update - August 2020 from Cystic Fibrosis NZ

      16 August 2020
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    14 August 2020

    Thanks to Sir Bob Elliot, and Bella, we have had a huge amount of publicity for Trikafta over recent weeks. This has resulted in Vertex publicly stating that they plan to apply to the appropriate government agencies, using their available pathways, to achieve Pharmac-funded access in the fastest possible way.

    In a meeting yesterday Vertex reiterated that they are fully committed to exploring access for people with CF in New Zealand to future Vertex medications. As a next step they plan to engage with the appropriate government agencies to gain their feedback into this process.

    This is great news, a big step forward and we anticipate an update as soon as the process is determined.

    CFNZ is excited to be working on the Trikafta campaign with Trikafta for Kiwis, a group led by Carmen Shanks and supported by Eddie Porter, and set up to advocate for Trikafta.

    We are excited to be working closely with Vertex and with Trikafta for Kiwis, a group led by Carmen Shanks and supported by Eddie Porter, and set up to advocate for Trikafta.

    You can access their updates on the Trikafta for Kiwis Facebook page, here >

    As with the campaign for Kalydeco, getting Trikafta and other precision medicines is made infinitely more difficult due to the medicines funding model. The model means New Zealand ranks amongst the worst in the OECD for access to modern medicines, and this has to change.

    Recently Jane attended the Medicines NZ dinner hosted by the Minister of Health, Hon. Chris Hipkins, with a panel discussion on Medicines Inequity - the problems & potential solutions. Medicines NZ advocates for better access to NZ patients to modern medicines through the public health system by supporting:

    An updated to the medicines policy and strategy, which CFNZ participated in the consultation process.

    Collaborative implementation of a rapid access scheme for modern medicines

    A defined separate medicines budget appropriations process leading to better transparency and governance of the budget.

    We’re continuing to collaborate with Medicines New Zealand, Patient Voice Aotearoa and Rare Disorders NZ, to ensure that the ‘access’ conversation remains front and central to key stakeholders. Thank you to the thousands of people who supported the ‘Reform PHARMAC and Double the PHARMAC budget’ petition following recent publicity. The petition closes soon on 22 August so there is still time to add to the 33,000 odd signatures.

    You can add your voice by signing the petition here.

    Christine Perrins, who has worked closely with Jane over recent months on strategic advocacy issues including input into a new medicines policy and strategy, will be putting her focus into the development of the Trikafta campaign strategy in conjunction with Trikafta for Kiwis, and to helping CFNZ address some of the wider issues that hamper access to medications for kiwis with CF.

    You can find updates on all our advocacy efforts on the website or Access for Aotearoa Facebook page here >

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  • Publicly fund Trikafta medication for people in New Zealand with Cystic Fibrosis

      7 August 2020
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    Please consider signing this petition in support of the Cystic Fibrosis (CF) community here in Aotearoa/New Zealand.

    https://www.parliament.nz/en/pb/petitions/document/PET_99952/petition-of-carmen-shanks-publicly-fund-trikafta-medication

    To be able to get this drug funded we need to advocate at all levels and from all angles. Bella and others from the CF community have been in the media light, check the links on this page and @trikaftaforkiwis , the public can now see first hand why we need the people in power to come on side.

    We are overwhelmed as a family, and so grateful for all your support for Bella.

    We will be supporting this kaupapa as well as the wider kaupapa of increasing medical funding in New Zealand!

      2 comments  |  Login to leave a comment
    • 09/08/2020 by Ian

      Done 😊

    • 09/08/2020 by Madeleine

      Done, this absolutely should be funded. I am willing to keep donating whenever I can to ensure those suffering CF get access to this amazing drug. ❤️

  • Message from Bella

      4 August 2020

    It has been overwhelming to see so many people wanting to help fund my treatment!

    The generosity of others means the world to me and I am truly grateful to everyone who is and has supported me on my journey this far

    Thank you all from the bottom of my heart! Thank you for helping me live xoxo

      2 comments  |  Login to leave a comment
    • 05/08/2020 by Bronwyn

      What an incredible and brave young woman you are Bella. X

    • 05/08/2020 by Ian

      Awesome Bella great news ☺️

  • Vertex has Announced This Morning ...........

      4 August 2020
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    Owing to New Zealand public pressure, we are thrilled that Vertex has announced this morning it will proactively engage with Pharmac for the funding of Trikafta.

      3 comments  |  Login to leave a comment
    • 04/08/2020 by Angela

      Power to the people!! This is such great news for Bella and all the beautiful souls that need this drug. Bless you all, and let's hope things move quickly.

    • 04/08/2020 by Mel

      I am sorry to say having watched the Pharmac and drug company dance for over 20 years I'm not sure if we will see anything soon. Furthermore successive governments have hidden behind Pharmac while delivering us access to drugs at a level which is at the bottom of the OECD. Sure it's only 250 million for Trikafta but the problem is there are perhaps 50 other drugs that other sick people are trying to get for various illnesses. The other thing to keep in mind is Pharmac get about a billion a year from government to buy our drugs and they are very unlikely to want to drop 25% of it on 1 drug. And despite the drug company making comforting noises they won't drop the price to anything near what Pharmac is prepared to pay. Pharmac obfuscate on reviewing drugs for years before declining them. The real issue is the government is underfunding drugs compared to other OECD countries.

    • 04/08/2020 by Mel

      I hope I'm wrong for everyone's sake especially for this young lady who is just lovely.