ANZSA at the 4th Annual Patient and Parliament Summit

Recently, ANZSA CEO Denise Caruso and Consumer Advisor Julijana Todorovic travelled to Canberra to represent ANZSA at the 4th Annual Patient and Parliament Summit.

This landmark event brought together patients, policymakers, clinicians, advocates and industry leaders to drive progress toward a stronger, fairer and more sustainable health system in Australia. Denise and Julijana ensured that sarcoma and other rare cancers remained part of the national conversation, advocating for models that better reflect the challenges faced by smaller patient communities.

The summit highlighted the importance of collaboration between government, industry, advocacy groups and consumers in achieving meaningful change. ANZSA’s continued presence in these forums ensures our community’s voice is heard where it matters most. Adding to this momentum, a significant Federal Government announcement could soon give Australians with rare and less common cancers faster and fairer access to life-changing treatments without prohibitive costs.

The ANZSA Consumer Advisory Panel made a submission citing the results from the SARC032 ANZSA-led clinical trial, which provides the scientific evidence of significant improvements to outcomes for this cohort of sarcoma patients. The submission shared patient perspectives on neo(adjuvant) immunotherapy for individuals with grade 2 or 3 resectable undifferentiated pleomorphic sarcoma or dedifferentiated or pleomorphic liposarcoma. The panel urged the PBAC to consider adding this therapy to the PBS, highlighting its potential to deliver the first meaningful improvement in patient outcomes for decades.

Minister for Health and Aged Care, The Hon Mark Butler, has received a positive recommendation from the Pharmaceutical Benefits Advisory Committee (PBAC) to subsidise a pan-tumour listing for nivolumab and ipilimumab for advanced or metastatic cancers. If adopted, this would mark a major shift in how cancer medicines are assessed and funded in Australia, paving the way for more equitable access for patients whose cancers, such as sarcoma, have too often been disadvantaged by existing models due to their smaller patient populations.