There is one new drug addition to the Pharmaceutical Benefits Advisory Committee (PBAC) meeting being held in May 2025. These drugs are being considered for use in treating Upper Gastrointestinal Cancers. We invite individuals experiencing cancer and or their families to share their lived experience of cancer for consideration.

What is the PBAC?

The PBAC is an independent, expert organisation appointed by the Australian Government, comprised of a team of health professionals including doctors, health economists and consumer representatives. Its primary focus is to recommend new medicines for listing on the Pharmaceutical Benefits Scheme (PBS), to ensure that Australian residents have access to new medicines at an affordable price. When recommending a medicine for listing, the PBAC considers many contributing factors. This includes:

• The conditions for which the medicine was registered for use in Australia
• How effective the medication has been
• Whether the medication is safe for use
• If this medication provides value for money in comparison to other treatments

What medications are being considered?

• Nivolumab (Odivo) and Ipilimumab (Yervoy) for the treatment of advanced (unresectable) Stage A, Stage B or Stage C Liver Cancer

What should I include in my submission?

Sharing your experience of living with, receiving treatment for cancer, or caring for someone with cancer helps PBAC members make decisions about what is most important to those impacted by cancer.
Listed below is a general guide if you need an idea of where to start:

• From your experience, comment on the impact cancer has had on your own or your loved one’s quality of life and your / their ability to do your normal activities day-to-day 
• The effect cancer has had on the family
• The effect cancer has had on your or your loved one’s work life
• The financial impact of having cancer/caring for someone with cancer and affording medications
• How it compares to other treatments you have had – e.g. potential side effects or even the differences in how you receive the treatment or medication
• What differences the treatment would make to your life or your loved one’s life – e.g. better quality of life, ability to return to work, attend special family occasions, additional survival time.  
• As someone living with cancer or a carer of someone with cancer, would this have any impact on your role as a caregiver / family member – e.g. Would this give you more time with your loved ones.

Please note: there is no pressure to talk specifically about the type of cancer you or a loved one may have or any other personal information you do not wish to share.

How to submit your comments:

Consultation is now open and closes on 28th May 2025. You can submit your comments:  

• Via online survey – available here 
• By sharing your experience with Pancare Foundation, which we will incorporate into our submission. Contact Sue Hegarty, Head Support and Advocacy ([email protected]) by 17th May 2025.  

Where to get additional help:

We understand that making a PBAC comment can be challenging, and we encourage you to get in touch with the Pansupport team:
PH: 1300 881 698 (Mon – Fri, 9am – 5pm AEST) if you need support with your submission. 

Please note: If you have questions about if this treatment could be suitable for you, please speak to your treating team. 

Patient Voice Initiative has a range of tools and resources that can help explain the PBAC process and provide you with tips on how to share your lived experience. You may find the following resources helpful:  

• Tip sheets for submitting consumer comments to the PBAC – Patient Voice Initiative  
• Do’s and don’ts when making a PBAC Consumer Comment – Patient Voice Initiative