Advocacy Resources

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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.