New hope secured for Australians with LFS

The Australian Government’s Federal Budget announcement 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).

Omico, a national non-profit precision oncology program, formally led the application to the Medical Services Advisory Committee (MSAC) for funding of whole-body MRI for LFS. The new MBS item will be listed from March 1, 2023, and will mean affordable access to the first risk reduction strategy dedicated to this very high cancer risk group.

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.”