Dialog Box

Rare Cancers Australia

Reports & submissions

Rare Cancers Australia (RCA) is determined to increase awareness, highlight the need for further research and initiate policy discussion and action to improve the lives and outcomes of all Australians living with a rare or less common cancer. RCA is currently working with government, clinicians and industry for change.

Submission to the Senate Inquiry into equitable access to diagnosis and treatment for individuals with rare and less common cancers, including neuroendocrine cancer


Rarefication: Personalised medicine in the genomic revolution

Our ability to rapidly obtain genomic information about a person and their cancer is discovering rare and less common subtypes of cancer, even of cancers previously considered common. For example, lung cancers were once diagnosed as one of two types – small cell and non-small cell lung cancer. Genomic profiling has now shown there are more than 30 subtypes, many of which are considered rare.

This report argues while official statistics classify 27% of cancers as rare, based on the current definition of tumour location, genomics shows many more are rare based on their molecular makeup.

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.

The technology and treatments already exist, but access is out of reach for many Australians due to the limitations of our health policy frameworks.


Counting the Cost: How we can assess the true value of investing in cancer treatment

A cancer diagnosis has profound and enduring effects on individuals and extends its impact to loved ones, colleagues, communities, and across society.

People affected by cancer have told us what matters most to them - celebrating family milestones, actively participating in society, reducing the mental health burden on families, or being able to go back to school or work.

In collaboration with Canteen, we've published two reports exploring what we should value when investing in cancer treatments. The first report, Counting the cost: The true value of investing in cancer treatment, introduced the concept of social return on investment analysis as a way to measure the value of social and personal benefits.

Our follow-up report, Counting the cost: How we can assess the true value of investing in cancer treatment, takes this a step further. It provides a practical case study demonstrating how we can effectively integrate social value into health technology assessments.

An initiative of RCA and Canteen


Counting the Cost: The true value of investing in cancer treatment

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.

What the report found  

Our current system of assessing the cost-effectiveness of medicines is not recognising the additional social value generated by cancer treatments. 

For every $1 invested in cancer treatments, there is $3 of social and economic value created.  

Over the course of five years, investment in new technologies, therapies, and services to extend the prognosis and quality of life of people with non-curative cancer can return $3.17 billion of social value/generate $2.13 billion of social value. 

This ultimately demonstrates that, although investing in new therapies can have a high upfront cost, there are substantial downstream social and economic benefits in treating people with the best available technologies. 

For more information, watch our explainer video below

An initiative of RCA and Canteen


The Rights and Roles of Australian Cancer Patients

For too long, ‘patient-centricity’ and ‘person centred care’ have merely been notional concepts that have not been reflected in the reality of patients’ lived experience.

With input from more than one thousand patients and carers – along with patient advocates, clinicians, and representatives from the pharmaceutical industry and patient organisations – this report aims to better understand the scale of the challenge we face in delivering the best person-centred care for Australian cancer patients.


National Medicines Policy Submission on behalf of Rare Cancers Australia

Published in 2000, Australia’s National Medicines Policy (NMP) aims to deliver positive health outcomes for all Australians through their access to and appropriate use of medicines. 

This report submission is on behalf of Rare Cancers Australia.


VISION 20-30: Building an Australian Cancer Futures Framework

Australia’s health system is among the best in the world. While the overall picture of cancer in Australia currently points to extended survival, these improvements are not shared amongst all cancer types and will not ensue without evolving some fundamental aspects of our health system.

The rapid pace of change brought about by emerging therapeutics and technology is challenging our previously well-equipped system.

Over 550,000 Australians will die from cancer between now and 2030 if nothing changes. However, if we plan and do the work now to maximise new science and emerging technologies, we will save lives.

With input from more than 40 Australian experts and consultation with over 500 members of the cancer community, the NOA Vision 20-30 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.


Genomic Testing Blueprint

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.


2018/2019 Annual Review

A report on the major progress made by Rare Cancers Australia - Innovation Against Inequality.


Rare Solutions: A Time to Act - Progress Update

A report on the major progress made in RLC cancers in the last 12 months, following the launch of the landmark report Rare Solutions: A Time to Act in August 2017.


Rare Solutions: A Time to Act

First report of its kind paves the way for government, industry and research community to unite to improve access and outcomes for Australian patients.


Submission to Senate Inquiry for the Availability and Accessibility of Diagnostic Imaging Equipment around Australia

This submission addresses the availability and accessibility which is a diagnostic imaging equipment - such as ultrasound, computed tomography (CT), nuclear medicine, radiography (x-ray), magnetic resonance imaging (MRI) and positron emission tomography (PET) - in Australia.

Diagnostic imaging is a critical part of the cancer journey and our submission can be downloaded below.

View our response to the Committee's recommendations here.


Submission to Senate Inquiry for Funding Research into Cancers with Low Survival Rates

This submission addresses the urgent need for improved funding into research for cancers with low survival rates, many of which are rare or less common.

A transcript of our CEO Richard Vines' address to the senate inquiry public hearing can be found here


RCA Cancer Patient Organisations in Asia Report

The need for patient groups to provide constructive input into the shape and priorities of health services within the Asia region.


Just a Little More Time: Rare Cancers Update Report

2016 update on the status of rare and less common cancers in Australia, including patient outcomes, research and treatment funding.


Just a Little More Time

Details incidence, mortality and survival rates and also examines current funding levels for research and treatment.


Access to Cancer Medicines Senate Inquiry

This submission was presented to the Senate Community Affairs Committee and addresses the shortfalls of our current medicines funding and access model. It offers two recommendations to improve the system.


Funding for Treatment of Rare Cancers in Australia

A survey of pharmaceutical company employees, physicians and patient/advocacy group members.


PD-1 and PD-L1 checkpoint inhibitor immunotherapies: options for subsidy consideration for multiple cancer types

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