Cancer survival increases significantly if the cancer is detected and treated at an early stage. However, for many people with rare and less common cancer, the road to an accurate diagnosis is not straightforward.
The challenge
Patients with rare and less common cancers often present with general ailments such as fatigue, weight loss or bloating, which can have a range of non-cancer-related causes. This means that other more common conditions are investigated first, which can mean numerous tests and appointments before cancer is suspected by either the patient or clinician.
There is also widespread variation in the information, professional training and diagnostic tests available to GPs in different parts of the country.
Compounding this issue is the absence of national screening programs for rare and less common cancers; these are reserved for more common cancers with larger population sizes, like breast, bowel and cervical cancers.
All of these factors contribute to later presentation, poorer survival rates, fewer treatment options, and higher costs for both health systems and individuals.
Addressing the issue
To help more people survive longer and live better with their rare and less common cancer, we need a greater focus on:
- Finding new ways to detect cancer earlier, such as through liquid biopsies, advanced imaging techniques, and artificial intelligence.
- Accelerating the complex path to diagnosis, by pushing ahead with research to find and capitalise on the diagnostic tools of the future.
- Targeting awareness and offering increased testing, monitoring and support for groups we know are at high risk based on genomic, environmental and lifestyle factors.
What RCA is doing about it
Awareness, early diagnosis and screening were key focus areas of the recent Senate inquiry into Equitable access to diagnosis and treatment for individuals with rare and less common cancers, including neuroendocrine cancer.
Our submission to the inquiry highlighted a number of significant barriers to equitable access. These include 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.
Our submission recommended specific action to improve equity, including increasing funding for rare and less common cancer research; improving data collection; increasing resourcing for screening, diagnostics and therapies; ensuring access to genomic screening as standard of care, and ensuring access to precision oncology therapies, when applicable.
Read the final recommendations of the Senate Inquiry.
What we want
The Australian Government should endorse and deliver all 41 recommendations of the Senate inquiry into Equitable access to diagnosis and treatment for individuals with rare and less common cancers, including neuroendocrine cancer, eight of which referenced urgently removing and reducing existing barriers to swift and accurate diagnosis of rare and less common cancers.
To kick start delivery, the Government should conduct a comprehensive audit of funding and availability of diagnostic imaging for people with rare and less common cancers.
There needs to be a nationally coordinated approach with states, territories, funded bodies, and the rare cancer community to implement the recommendations in full.