CLICK HERE FOR THE SURVEY:    https://ohta-consultations.health.gov.au/ohta/pbac-nov-2025/consultation/subpage.2021-08-13.1345934449/

Currently the cost of Pegcetacoplan (Syfovre) is $3,300 per injection per eye - every 8 weeks.  If we can get this medication listed on the Public Benefits Scheme (PBS) the cost will be significantly reduced.

Please help complete the above survey to get Pegcetacoplan (Syfovre) onto the Public Benefits Scheme (PBS).  

CLOSES:  24 September 2025

The more people who submit their views, the better for the Pharmaceutical Benefits Advisory Committee (who make the recommendation to list Pegcetacoplan (Syfovre) - OR not) to understand the patient perspective.

Overview

Consultation has opened for the November 2025 Pharmaceutical Benefits Advisory Committee (PBAC) agenda.

The PBAC welcomes input from patients, carers, health professionals, consumer groups or organisations and members of the public on medicines and vaccines submitted for PBAC consideration. 

The PBAC considers these public consultation inputs when considering the clinical and economic evidence presented by the applicant.

Information provided by consumers helps the committee understand what consumers consider to be the main benefits and harm of the proposed medicine or vaccine. These may be different than those measured in the clinical trial evidence presented in the submission.

How to provide input

Input can be submitted via the online survey.  A copy of the questions asked in the survey and additional guidance can be downloaded below under ‘Related’ to assist your preparation.

There is the option to upload a file with your submission. The preferred file types are PDF or Microsoft Word, however other file types will be accepted, provided they are no larger than 25mb. If your file is too large, or you wish to upload more than one file, please contact commentsPBAC@health.gov.au

You can save and come back at any time to your response before the consultation close date.
Once you have submitted, a copy of your submission will be emailed to the contact email address provided.

It is important that all of the questions in the survey are answered. 

Please be aware that if you only complete the 'Contact details' section of the survey, your input will be considered incomplete. Consequently, your contribution will not be reflected in the consultation summary for the PBAC's consideration.

Please note in week 8 of the PBAC cycle, the PBAC agenda will be updated to include early pathways resubmissions and items for review. 

CLICK HERE FOR THE SURVEY:    https://ohta-consultations.health.gov.au/ohta/pbac-nov-2025/consultation/subpage.2021-08-13.1345934449/