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More Access To Life-Changing Genomic Testing For Rare Diseases

29 April 2017

More Victorian children with rare conditions and diseases will now be able to access world-leading genomic sequencing tests – at no cost – so they can get the diagnosis and treatment they need sooner.

The Andrews Labor Government will provide $8.3 million in the Victorian Budget 2017/18 to fund public access to genomic testing for children and adults with rare conditions and diseases.

Many patients with rare and complex diseases undergo expensive medical tests for years and years, and are still unable to find the cause of their illness.

Genomic sequencing speeds up the diagnosis of rare and complex genetic conditions. A genomic sequencing test can read the DNA in all 20,000 genes from an individual in a single test.

This funding builds on the Labor Government’s $25 million investment in the Australian-first genomic sequencing capability project, which will see around 2000 Victorians access genomic sequencing tests over four years.

The funding in the Victorian Budget 2017/18 will mean that more Victorian kids with rare conditions will be able to access this life-changing technology through the public health system, rather than through the genomic sequencing research project.

This ground-breaking project is already delivering truly remarkably results, with the initial phase finding genomic sequencing provided six times as many diagnoses overall compared to standard tests.

It also found genomic sequencing saves money, with children receiving their diagnosis at one quarter of the cost of current testing practices, saving thousands of dollars.

The additional funding will support access to clinical genetic consultations, genetic counselling, multi-disciplinary care across medical specialities and genomic sequencing currently not funded under Medicare.

The clinical care will primarily be provided by paediatric specialists at the Royal Children’s Hospital and Monash Children’s Hospital and the genomic sequencing by accredited laboratories.

There are an estimated 2,400 Victorians living with an undiagnosed rare genetic condition and each year in Victoria around 30 babies are born with an undiagnosed condition.

Quotes attributable to the Minister for Health Jill Hennessy

“Kids with rare genetic conditions can suffer years of painful tests and procedures, without ever learning what’s making them ill – we’re changing that by funding public access to this incredible technology.”

“The evidence is clear. Genomic sequencing is helping more patients receive a diagnosis faster, and get the care and treatment they need, sooner.”

“Genomic sequencing genuinely has the power to change and save the lives of people with rare conditions and diseases, and we’re proud to be leading the way, here in Australia and across the world.”

Reviewed 19 August 2020

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