Families with Li-Fraumeni syndrome (LFS) have 90% lifetime cancer risk
Half develop cancer before they reach the age of 30
The recent Australian Government's Federal Budget brings new hope to Australian families carrying gene variants with an extreme risk of cancer (Li-Fraumeni syndrome, known as LFS), with a four year $1.9M commitment to fund whole-body magnetic resonance imaging (MRI) under the Medicare Benefits Schedule (MBS).
LFS is an inherited condition caused by changes to a gene known as TP53, which is involved in suppressing tumours. When damaged, the gene cannot prevent tumour growth, leading to a 1 in 2 risk of those with LFS developing cancer by the age of 30 years, and a 90% lifetime risk. There are estimated to be up to 1000 individuals with LFS in Australia. Children of parents with LFS have a 50% (1 in 2) chance of inheriting the disease.
The submission was based on a global study* co-led by Australian researchers from the Garvan Institute of Medical Research and the Peter MacCallum Cancer Centre, which found whole-body MRI was instrumental in detecting cancers at an early and curable stage in patients with LFS.
Professor David Thomas, Head of the Genomic Cancer Medicine Laboratory at Garvan and CEO of Omico says, "We're delighted the federal government has made whole body MRI part of routine care for families affected by LFS. Omico is committed to translating research into improved health outcomes for Australian cancer patients."
"It is with this kind of partnership we can improve outcomes for Australians with cancer by accelerating the use of precision oncology as a research-led model of care and modernising the Australian healthcare system," he adds.
"This is great news for Australian families living with LFS, who will certainly benefit from having secure affordable access to whole-body MRI scans," said Samantha Arthur, Co-chair of LFS Association ANZ who was diagnosed with LFS in 2011. "This tool will enable them to be proactive with their healthcare team's support, and make informed decisions to manage the increased risk of cancer that they live with every day."
"We don't yet have a preventive treatment that can help people with LFS to avoid cancer and so active surveillance – with a whole-body MRI scan done each year – is the best available approach" says Professor Paul James, consultant clinical geneticist and director of Parkville Familial Cancer Centre at Peter Mac. "It gives us the chance to detect these cancers at the earliest possible stages when treatment is most likely to be successful."
"Commonwealth support through Medicare provides an effective option for clinicians and we know that it also has a really positive effect on reducing the anxiety and distress that these conditions can cause for many," he adds.
Dr Mandy Balinger, Leader of the Genetic Cancer Risk Group, Garvan, and head of cohorts for the Omico network, led the research study that supported the application and has changed clinical practice for LFS surveillance. "It is wonderful to see that over a decade of work has led to a new way to detect early cancers for these individuals with LFS and their families – it has been an area of critical unmet need and we hope it will support important outcomes as a result of the new item, over time".
About Omico:
Omico members include the Garvan Institute of Medical Research, University of Sydney, Peter MacCallum Cancer Centre, Metro South Health, the Central Adelaide Local Health Network, the Northern Territory Government, Linear, Royal Hobart Hospital and ACT Health.
The Surveillance study in Multi-Organ Cancer prone syndromes (SMOC) is currently open at the following centres (www.omico.com.au/SMOC)
- Garvan Institute of Medical Research; David Thomas, Mandy Ballinger
- Peter MacCallum Cancer Centre; Paul James, Alison Trainer, Kate Moodie
- Prince of Wales Hospital; Kathy Tucker, Milita Zaheed, Daniel Moses
- St Vincent's Hospital Sydney; Brad Milner
- Monash Health; Nick Ferris, Marion Harris
- Royal Adelaide Hospital; Nicola Poplawski, Eryn Dow
