Tuesday 3 December, Melbourne
A critical gap in Australia’s cancer care system is leaving adolescents and young adults (AYAs) with cancer aged 19-25 without access to potentially life-saving personalised medicine.
Over the past decade, cancer treatments have improved through the implementation of precision oncology. Programs like Zero Childhood Cancer (ZERO), currently accessible to Australian children (0-18), have demonstrated the power of genomic profiling, where tumours are genetically tested to identify individually tailored treatment options.
Despite the success of ZERO and other personalised medicine programs, AYAs aged 19-25 are falling through the cracks. Many of the cancers affecting this age group are rare, with some having particularly poor survival rates. These cancers are often overlooked in traditional research and clinical trials, leaving young patients without access to innovative treatments.
Speaking from the 6th Global Adolescent and Young Adult Cancer Congress in Melbourne, Canteen Australia CEO, Peter Orchard, joined with Australian of the Year, Professor Richard Scolyer, to call for urgent reform to Australia’s personalised medicine accessibility.
“Australia has all the tools, knowledge and technology available to revolutionise cancer care for young people, but unfortunately many are denied the opportunity to benefit from these advancements,” Canteen CEO Peter Orchard said.
“We know that around 50% of young people diagnosed with cancer are faced with rarer or harder to treat cancers. They should be a key priority for access to personalised medicine. Instead, many are faced with poor prognoses and in many cases, limited or no treatment options.”
Professor Richard Scolyer echoed Canteen’s call for reform. Professor Scolyer was diagnosed with a rare type of brain cancer (glioblastoma IDH wild-type) last year and is the first person in the world to receive pre-surgery immunotherapy and a personalised anti-cancer vaccine for brain cancer, and this was guided by genetic profiling of the tumour.
“I feel very lucky to be here today with no sign of tumour recurrence,” Professor Scolyer said.
“Matching cancer treatments to a person’s genetic profile of their cancer is crucial to identify the best medical care for young people with cancer, especially those with rarer, more aggressive and harder to treat cancers. By investing in genetically-guided research and clinical trials, we can accelerate the development of new therapies and improve outcomes for this vulnerable population.”
The Global Adolescent and Young Adult Cancer Congress is organised by a global coalition of youth cancer charities, made up of Canteen Australia, the UK’s Teenage Cancer Trust and Teen Cancer America.
About personalised medicine for cancer treatment in Australia:
- Over the past decade, three Commonwealth funded programs, including Children’s Cancer Institute’s Zero Childhood Cancer Program (ZERO), Omico’s Molecular Screening and Therapeutics (MoST), and Precision Oncology Screening Platform Enabling Clinical Trials (PrOSPeCT), have established a fundamental national infrastructure with the scale, resourcing and expertise to integrate precision oncology into routine practice for cancer patients from birth to old age.
- ZERO is available for all children aged 0 – 18 years. Through this trial, ZERO undertakes comprehensive genomic profiling, consisting of Whole Genome Sequencing (WGS) of the tumour and germline, Whole Transcriptome Sequencing (WTS), and methylation profiling (array), aiming to make potentially actionable treatment recommendations that are more likely effective more of the time.
About Adolescent and Young Adult (AYA) Cancer:
- More than 1,300 young Australians aged 15 to 25 are diagnosed with cancer every year.
- This age group is largely faced with rare or rarer cancers (RC) or cancers of unknown primary (CUP).
- Over a quarter of the cancer diagnoses that affect AYA cancer patients have five-year survival rates below 80%.
- Compounding the survival rate challenge is the scarcity of clinical trials that target these rare or rarer cancers, which in turn means that AYAs who have exhausted all other treatment avenues are missing out on the possibility of a further life-saving treatment option.
About Canteen Australia:
- Canteen is an Australian not-for-profit that provides free and tailored support to young people aged 12-25 who are impacted by cancer.
- Specialist treatment and support for young people with cancer aged 15-25 is provided by the hospital-based Youth Cancer Services (YCS), which receive federal funding through Canteen as well as state and territory government funding.
- Canteen was set up by a group of young cancer patients in 1985 and is one of Australia's leading cancer organisations where young people still guide the organisation at every level.
