Submit your Comment to PBAC, Tips, Do’s & Dont’s
- You can provide your input to the public consultation on sapropterin and/or pegvaliase here.
- To read a guide on how to submit a Consumer Comment to the PBAC and using the portal click here.
- Here is a summary of what questions the online survey will ask you – click here.
- Do’s and Dont’s when making a PBAC Consumer Comment – A 30 second guide so you don’t waste your precious time providing comments that won’t make any difference to the advice.
- Preparing for PBAC Consumer Comments – Carers and Family Members – A tip sheet explaining how to prepare for making Consumer Comments before a medicine of interest is listed on the PBAC agenda. Also contains useful information about making a comment.
Things to consider in your comments:
- Don’t censor yourself in terms of telling your story. Let the PBAC know what your challenges and difficulties are that stop you from achieving your optimal health/clinical outcome
- Quality of Life; avoid broad statements about inequity and quality of life, expand on what and how your quality of life may be improved with access to other treatments.
- Share any concerns you may have around managing PKU and other health concerns, concerns you may have on PKU treatment and what you might expect the impact of either/both of the new treatments listed.
- We encourage your loved ones to make a submission. This is your opportunity to make our collective voices are heard. If you’re unclear or you want help, please contact us.