Two new drugs are being considered for treating Upper Gastrointestinal cancers. Individuals with cancer and their families are invited to share their experiences for consideration at the Pharmaceutical Benefits Advisory Committee (PBAC) meeting in March 2024.
Your insights and experiences can help inform decisions about these new treatments. PBAC is an independent expert body appointed by the Australian Government. Its members include doctors, health professionals, health economists, and consumer representatives. Their primary role is to recommend new medicines for listing on the Pharmaceutical Benefits Scheme (PBS).
When recommending a medicine for listing, the PBAC considers the conditions for which the medicine was registered for use in Australia, how effective it is, how safe it is, and whether it provides value for money compared to other treatments.
Sharing your experience can help PBAC members make decisions on what is most important to people impacted by the disease. The kinds of insights PBAC wants to hear include how cancer and your current treatment have affected your life and how the possibility of a new treatment may impact it. Both individuals diagnosed with cancer and their families are invited to submit comments.
What therapies are being considered?
- Futibatinib (Lytgobi®): For treating patients with locally advanced or metastatic cholangiocarcinoma who have previously progressed on systemic therapy. To be eligible, fibroblast growth factor receptor 2 (FGFR2) fusion or rearrangement must be present in the cancer.
- Zolbetuximab (Vyloy®): For first-line treatment of locally advanced unresectable or metastatic epidermal growth factor receptor 2-negative gastric or gastroesophageal junction (G/GOJ) cancer.
What should I include in my submission?
As a guide, you should include your lived experience of what it’s like to live with cancer and the realities of current treatments available. You don’t need to provide general information about the type of cancer or clinical data on the therapy.
If you have received one of the treatments being considered, focus on the difference it has made for you. For example:
- The impact on quality of life and ability to carry out normal activities
- The effect on your family and work
- The financial impact of cancer and treatment
- How it compares to other treatments you’ve had (e.g., side effects, differences in administration).
If you are a family member or caregiver, you should focus on what accessing the treatment would mean for you or your loved one. For example:
- The difference the treatment could make for your loved one (e.g., enhanced quality of life, ability to return to work, additional survival time, witnessing special family occasions).
- How it would positively impact you in your role as a caregiver (e.g., giving you more time with your loved one).
How to submit your comments
Consultation is now open and closes on 29 January 2025. You can submit your comments:
- Via the online survey – available [here]
- By sharing your experience with Pancare Foundation, which will incorporate your insights into its submission. Contact Sue Hegarty, Head of Program Development and Advocacy, at [email protected] by 27 January 2025.
Where to get additional help
We understand that making a PBAC comment can be challenging. If you need support with your submission, please reach out to the PanSupport team at 1300 881 698 (Mon–Fri, 9 am–5 pm AEST).
If you have questions about whether these treatments could be suitable for you, please speak with your treating team.
The Patient Voice Initiative offers tools and resources to explain the PBAC process and provide tips on how to share your lived experience. You may find the following resources helpful:
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