CF Mummy, Emmah Evans gives us goosebumps as she shares her life-long battle of living with invisible disease, Cystic Fibrosis. She shares how she is using her voice for power.

In the Driver's Seat

2020 SA Local Hero, Emmah Evans is an author, mother, motivational speaker and Cystic Fibrosis Ambassador. Emmah lives with the life-threatening lung disease Cystic Fibrosis and knows firsthand the challenges that come with this debilitating invisible disease. With a life expectancy of just 37, she was given up for adoption at only days old after doctors believed she wouldn’t survive. Now in her thirties, Emmah has a list of credible achievements and inspires many globally.

Australia’s Pharmaceutical Benefits Advisory Committee has ignored ongoing pleas from the Cystic Fibrosis community to add a miracle-drug, Trikafta to their November 2020 agenda. Around the world, Trikafta has changed the lives of people living with Cystic Fibrosis. In Australia, however, access to this drug costs $300,000 per year, making it largely inaccessible to more than 3,500 people affected by the condition.

Join us in this movement to use our voices and power, together to make a much needed change! We cannot let the beautiful souls that live with this invisible disease suffer alone. We ask that everyone use the below points of contact to please reach out to our PM and the Minister of Health to ensure that the Trikafta drug is added to the PBAC November 2020 agenda. We urge you to come from a respectful place when addressing these figures. Together we are strong - raise your voice and let’s make a difference.

HERE’S HOW YOU CAN HELP:

1. Contact Greg Hunt MP and Prime Minister Scott Morrison and respectfully ask them to put Trikafta on the 2020 PBAC agenda
2. Post a photo on Instagram, Facebook and Twitter tagging @greghuntmp and @scottmorrisonmp and ask them to add Trikafta to the 2020 PBAC agenda. If you don’t have a photo to share, head to @ecotan to repost our photo.
3. Visit our Facebook page and share our recent post asking the PBAC to consider Trikafta at their next meeting.
4. Call MP’s offices to request that they add Trikafta to the 2020 PBAC agenda!
   • a.Call Greg Hunt MP – [phone]
   • b.Call Chris Bowen MP – [phone]
   • c.Prime Minister Scott Morrison – [phone]

We have even drafted a message that you can use to address these people!

Dear Prime Minister Scott Morrison / Greg Hunt MP / Chris Bowen MP

I’m asking you to help the 3,500+ Australians living with Cystic Fibrosis by adding Trikafta to the Pharmaceutical Benefits Advisory Committee’s 2020 agenda. At the moment, access to this miracle drug costs $300,000 per year. CF sufferers can’t wait any longer. Without making it more affordable, Australian lives will be lost. Please help our CF community improve their quality of life by ensuring Trikafta is considered by the PBAC in November.

Points of Contact

@scottmorrisonmp

@greghuntmp

@alanjonesaus

@theprojecttv

@chrisbowenmp

https://www.facebook.com/scottmorrison4cook/

https://www.facebook.com/greg.hunt.mp/

https://www.facebook.com/alanjonesaustralia

https://www.facebook.com/TheProjectTV/

Also follow Emmah’s journey of surviving motherhood whilst living with CF on Facebook and Instagram:

Facebook: https://www.facebook.com/CFMummy/

Instagram: @cfmummy