Rare Cancers Australia (RCA), and Australia’s leading cancer experts, launch blueprint for lessening the devastation of rare and less common (RLC) cancers in Parliament House today, calling for an overhaul in how they are defined and treated.
- All cancers are becoming ‘rare’ as a result of the discovery of rare and less common genetic subtypes,(1) yet Aussies are not aware of the devastation of RLC cancers (2): currently, 27% of the 165,000 yearly cancera disease where abnormal cells split without control and spread to other nearby body tissue and/or organs diagnoses (and 37% of deaths) are defined as RLC, (3) and this is expected to increase as our understanding of rarer subtypes improves, but 60% (2) of Aussies do not know what these cancers are. Urgent education is necessary.
- Our nation’s leading experts call for genetic profiling to be offered to all people diagnosed with cancer: It can reveal if cancer is linked to a gene mutation, and if someone would benefit from precision medicines, (1) which are here right now, but remain out of reach and unaffordable to many. Government intervention could change this.
- Every person’s cancer is as unique as their fingerprint. Cancer is different to other diseases and demands a personalised treatment approach (1): Precision oncologythe study, diagnosis and treatment of cancer offers substantial benefit for people living with cancer. (1) Australia must ensure equitable access to deliver the best possible outcomes for all.
CANBERRA, 17 OCTOBER 2023: Today, Australia’s leading cancer experts, politicians, and people with lived experience of cancer are meeting in Parliament House, Canberra, for RCA’s annual CanForum event. RCA’s flagship advocacy event, established in 2015, is set once again to challenge, educate, and inspire attendees to advocate for change to improve experience and outcomes for everyone affected by cancer as they launch their breakthrough cancer report: ‘RAREFICATION: Personalised medicine in the genomic revolution.’
The Rarefication report shows that more cancers are becoming rare due to our ability to rapidly obtain genomic information on a person and their cancer. (1) As a result, many cancers that were previously considered common can now increasingly be characterised by the discovery of rare and less common genetic subtypes, leading to a dramatic shift in how health professionals can assess, treat, monitorto check on, keep track of, and prevent cancer. (1)
For example, people living with lung cancer, which was once considered a common cancer, were previously diagnosed with one of two possibilities – small cell or non-small cell lung cancer. Now, we understand there are more than 30 distinct subtypes of lung cancer – many of which are rare. (1)
As a consequence of our improved understanding of cancer and how it can be characterised our definitions may also be changing. Officially, 27% of cancers are classified as rare (fewer than six cases per 100,000 people) or less common (fewer than 12 cases per 100,000 people), (3) based on the tumoura tissue mass that forms from groups of unhealthy cells location, but now we understand a person’s cancer can be as unique and rare as they are, which means that the number of people with RLC cancers is, in fact, increasing. (1) Despite the growing prevalence, the vast majority (85%) of Aussies are unaware of the impact of RLC cancers. (2)
To coincide with the report launch, RCA is calling for policy frameworks to change to offer greater hope for the increasing number of people diagnosed with RLC cancers. The principal recommendation calls on the Federal Government to progress a coordinated national genomics strategy, leveraging existing Government commitments to Cancer Australia and Genomics Australia to ensure that all people diagnosed with cancer have access to comprehensive and cost-effective genomic profiling as standard of care.
According to RCA General Manager, Christine Cockburn, genomic profiling and precision medicines should no longer been seen as revolutionary or new: “The way cancer is treated, particularly for those impacted by rare and less common cancers, has evolved at a rapid pace, even in the last decade. The exponential rise of new treatments including immunotherapies and targeted therapies, for example, has truly transformed outcomes for many thousands of families living with and impacted by cancer.
“So, while these dynamic technologies and diagnostic tools are incredible, policy makers should no longer consider them ‘new’, and therefore out of reach to those who need them most. They are here right now and have been for years – the challenge is ensuring equity of access to them.
“Alongside calling for universal access to precision oncology, our report also aims to educate the Australian public, and decision-makers, on the power of genomics and of genetic testinga procedure that analyses DNA to identify changes in genes, chromosomes and proteins, which can be used to analyse tumour DNA to help determine which treatment has the greatest chance of success, because our research shows that 80% of Aussies do not know how genomic profiling can improve the outlook for those living with cancer, and that 76% do not know what a precision medicine is.”
Ms Cockburn continued, “Given that these technologies have already changed the way cancer is diagnosed and treated, it is important for all Australians to be aware of them, because sadly cancer will impact one in two of us before our 85th birthday.”
In addition to equitable access to genomic profiling, the report also calls for all people diagnosed with cancer to have access to matched targeted therapies, immunotherapies, cell and gene therapies, personalised cancer vaccines, and combination therapies, where there is identified clinical benefit.
“It is clear that the way we have historically understood cancer has changed with our increasing knowledge of cancer genomics and how such technologies have increased our understanding of the biology of cancer. So, it is right that our health system must also evolve to enable equitable access to better therapies,” said Ms Cockburn.
People living with RLC cancers face a unique set of challenges, particularly when it comes to accessing clinical trialsresearch studies performed to test new treatments, tests or procedures and evaluate their effectiveness on various diseases. RLC cancers receive disproportionately less in Government research funding, and new treatments face hurdles during the health technology assessment (HTA) review process (i.e. the process by which new medicines are assessed for clinical and cost effectiveness), given that the HTA system is designed for more common conditions, and medicines for larger populations of people.
To address these inequities, and ensure timely and equitable access to precision oncology for all Australians diagnosed with cancer, RCA is calling for urgent action on four priority recommendations to Government and key stakeholders at CanForum 2023, including:
- Progressing a coordinated national genomics strategy.
- Prioritising research into genomic studies and precision oncology.
- Developing new pathways in our Health Technology Assessments.
- Directing Australian Institute of Health and Wellness (AIHW) to include data on molecular subtypes and support the establishment of appropriate registries to adequately facilitate data collection.