Reports & submissions

Through our direct patient support work at Rare Cancers Australia, we've witnessed firsthand the devastating financial impact of rare and less common cancers on the patients and families we serve daily. This report shares the lived experiences of our community members, whose voices illuminate the true cost of cancer beyond medical statistics.

Australia has a unique opportunity to transform cancer care by embedding genomic profiling into routine clinical practice.

RCA Policy Briefing on Health Technology Assessment (HTA) reform

A look back on the year and how together we've made a real difference for people living with rare, less common and complex cancers in Australia.

The report sets an ambitious target for Australia: to achieve greater than 90% five-year survival for everyone diagnosed with cancer, and for true equity of experience by 2035. We believe no one should be left behind, and this report outlines the immediate actions needed to bring us one step closer to achieving this bold vision.

Our submission highlighted a number of significant barriers, including late, protracted diagnosis due to insidious symptoms; absence of screening programs; paucity of experts with knowledge about rare cancers; geography; and high out of pocket costs.

This follow-up report to Counting the Cost: The true value of investing in cancer treatment, provides a practical case study demonstrating how we can effectively integrate social value into health technology assessments.

This report explores the opportunities genomics can offer for people diagnosed with a rare cancer and outlines the policy changes needed to ensure all Australians have equitable access to personalised medicine and genomic testing, when appropriate.

This research explores the significant impact of cancer on the lives of Australians and their families, and the economic and societal benefits achieved by investing in cancer treatment to improve quality of life and prolong survival.

This report aims to better understand the scale of the challenge we face in delivering the best person-centred care for Australian cancer patients.

Published in 2000, the NMP aims to deliver positive health outcomes for all Australians through the access to and appropriate use of medicines. Our submission commented on the scope, proposed principles, and objectives of the policy, as well as creating a person-centred policy.

This report casts a national direction for how cancer care will evolve over the next ten years for all cancer patients – regardless of cancer type, patient geography or financial situation – and calls on the need for an Australian Cancer Futures Framework.

This report seeks to characterise the cancer genomics landscape in Australia and explore the salient considerations around defining a path towards broad funded genomic testing for cancer patients.

This report details the progress made by the RCA team throughout 2018/19, including patient support and care, patient advocacy and industry engagement, campaigns, advancements in technology and more.

Our submission, with contributions from our supporters and rare cancer community, focussed on geographical and financial inequities, asserting that "timely access to diagnostic imaging should not be determined by someone’s bank balance or postcode."

This submission discusses PD-1 and PD-L1 checkpoint inhibitor immunotherapies: options for subsidy consideration for multiple cancer types (pan tumour).

This report demonstrates the progress made for rare cancer patients since the publication of 2017’s Rare Solutions: A Time to Act, and also addresses the implications of genomics for cancer patients.

This landmark report addresses the challenges faced by Australian rare cancer patients on a day-to-day basis and provides some workable solutions to improve access and outcomes.

This report provides an update to the 2014 Just a Little More Time – Rare Cancers Baseline Report, including the current state of research, diagnosis and treatment of super rare, rare and less common, and common cancers in Australia.

This report covers the findings of a regional survey that sought to understand the current capabilities of patient organisations, identify opportunities for improvement, and identify how RCA and other mature patient organisations can assist by working on a peer-to-peer basis.

This report details incidence, mortality and survival rates for rare and less common cancers and examines current funding levels for research, treatment and care.