Dialog Box

Shining a light on CF & Trikafta in Australia

Last Monday night 840,000 viewers watched the season premier of Married at First Sight (MAFS) Australia.

You may well be asking yourself, ‘Why is Cystic Fibrosis (CF) Community Care talking about MAFS?’

Well, the first couple to get married were Lyndall and Cameron. Lyndall is a 27-year-old accountant from Perth. Lyndall was diagnosed with CF when she was 3-weeks old.

Whether you love or hate the show, there’s no denying that Lyndall’s story certainly lit up social media and shone a light on people living with CF in Australia.

Bringing awareness to CF can undoubtedly help in educating others on the realities of living with CF, sharing stories and in furthering fundraising efforts, helping to fund support services and research to find a cure.

If you watched the show and are here to find out more about CF, we can certainly help. Here’s some information you might like to look at.

If you’re living with CF and would like to hear more about others also living with CF, CFStrong is a fantastic resource hub sharing stories and lived experiences from around Australia.

In Monday night’s episode, Lyndall spoke a lot about Trikafta.

Lyndall started on Trikafta 6-months ago. Trikafta is a type of medication known as a CFTR modulator. CFTR modulators work differently to other medications for CF. They work by correcting the malfunctioning protein that causes CF. In doing so, this therapy reduces the build up of mucus throughout the body, particularly within the lungs, resulting in improved quality of life for those living with CF. They are not a cure, but they help the body’s cells to function more normally.

“This new drug Trikafta is genuinely a miracle. Without it I don’t think I would even be here,” Lyndall said.

“Statistically it’s been predicted to add another 40-years to the life expectancy. When it got approved this year, I can’t even explain the relief and the feeling, the excitement. I have energy, I am sleeping through the night. I can go on a walk and not, you know need to have a break. A lot of the doom and gloom has gone now, its all like, well here’s a sad story but it has a happy ending. I’m going to be an old person!”

Trikafta is a relatively new drug in Australia and is unfortunately not suitable for all adults living with CF.  It is also not yet available for children aged 6-11 years. While the Pharmaceutical Benefits Advisory Committee (PBAC), recommended Trikafta for children aged 6-11 in December 2022, the PBAC has not granted a facilitated (priority) pathway to its recommendation, as they did with patients 12+, which could delay access to the important medication.

At CFCC we are working hard, with the support of community voices, to ensure that it is listed on the PBS for children, 6–11 years at the very first opportunity. Follow us on social media or sign up to our newsletter, where we will share updates on how you can support the advocacy efforts.

Lyndall explained her life with CF beautifully in her first TV appearance on MAFS and we wish her love, health and happiness.

We need your help to guarantee reimbursed access to Trikafta as soon as possible by reaching out to your local Federal MP urging them to support reimbursed access to Trikafta for 6 – 11 years old’s.

We need to ensure they all understand our urgency and move to list as soon as possible.

Read more here: https://www.cfcc.org.au/news/23/mafs-shining-a-light-on-cf

Reach out to your local Federal MP here


Want to be involved in helping to support people living with CF? Visit our events page to sign up for our 65k 4 65 Roses Walkathon, or our Melbourne & Sydney High Teas.

Pictures: Channel 9 / Lyndall Grace / news.com.au

06 February 2023
Category: News