PBAC Submission Guide

If you’re not sure what to say in your PBAC submission, read the tips below to help you get started. (Note: there is no current submission possible, we'll update this if it changes)

We need to let the PBAC know what it is like to live with CF and why we need Trikafta urgently. Your submission is valuable because it shows the real-life impact Trikafta could have on Australians. Your stories have power!

Feel free to include any of the aspects below (and more, there is no right answer!) along with any of the facts from the Homepage

Note: When you go to the PBAC submission portal, you’ll be asked to choose the Medicine Name: you’ll find Trikafta under its drug name ‘Elexacaftor, Tezacaftor and Ivacaftor’

People living with CF and their parents could talk about what it is like to live with CF, how Trikafta could make a difference to your / their life and what the delay has meant for your / their health. If you / your loved one is on Trikafta, you could talk about your health before you started and how it has helped / changed your life.

Here are some specific ideas of what you could talk about:

• What your / your loved one’s health is like, such as declining lung function, chest infections, weight gain & hospital admissions. You could potentially be quite detailed, eg talking about coughing or being puffed out

• Treatments, including what you / your loved one does daily and its impact on your day-to-day life, would be useful to mention if these don’t work well or are quite invasive / traumatic

• Other issues such as diabetes, liver disease and mental health. This could also include if you’ve had or are waiting for a transplant

• How CF affects school or work

• What effect the delay has specifically had on your / your loved one’s health (reinforcing why we need it urgently). For example:

  • decreased lung function

  • lung damage

  • hospitalisations or surgeries

  • ability to work / go to school

  • having to rely on treatments that are time consuming, invasive, traumatic or less effective.

• What Trikafta would mean for you / your loved one and why you / they need it urgently

Submissions from those who aren’t waiting for Trikafta will still be useful! For example, if your loved one is younger than age 12, you could talk about your health burden now while you wait for the same chance to take medications that treat their CF defect. If you are waiting for future medications or have had a transplant, you can help by talking about your / your loved one’s health and why we need access to better medications urgently.

Feel free to include any of the above in your submission, but don’t feel limited to this list! Any submission will help, particularly if it is personal and shows the PBAC how hard it is to live day to day with CF.