New hope for Australian families carrying deadly cancer gene variant

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Researchers and patients have welcomed the federal government's commitment to fund access to whole-body magnetic resonance imaging for families carrying gene variants with an extreme risk of cancer.

Li-Fraumeni syndrome, more commonly known as LFS, is an inherited condition caused by changes to a gene known as TP53. The gene is involved in suppressing tumours.

When damaged, the gene cannot prevent tumour growth, leading to a one in two risk of developing cancer by the age of 30 and a 90 per cent lifetime risk.

There are estimated to be up to 1,000 people living with LFS in Australia. Children of parents with LFS have a 50 per cent chance of inheriting the disease.

The federal government has added whole-body magnetic resonance imaging (MRI) to the Medicare Benefits Schedule (MBS) for families at high risk of LFS.

National non-profit precision oncology program, Omico, formally led the application to the Medical Services Advisory Committee for funding of whole-body MRI for LFS. The new MBS item will be listed from 1 March next year.

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. The study found that whole-body MRI was instrumental in detecting cancers at an early and curable stage in patients with LFS.

According to Professor David Thomas, the head of the Genomic Cancer Medicine Laboratory at Garvan and CEO of Omico, “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.”

“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 Australia and New Zealand, 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,” said 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 said.

Dr Mandy Balinger, leader of the Genetic Cancer Risk Group at the Garvan Institute of Medical Research 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," said Dr Balinger.