Govt funding for testing
'The evidence shows that offering carrier testing for at-risk individuals is a successful and proven health strategy, benefiting both the individuals at risk and the broader community'
The federal government’s Medical Services Advisory Committee (MSAC) last week recommended to Health Minister Mark Butler that public funding be made available for targeted carrier testing of the Ashkenazi Jewish population.
Since 1995, Wolper Jewish Hospital has provided targeted carrier testing at no charge for up to nine genetic variants which people of Ashkenazi ancestry have a one in five chance (in aggregate) of carrying. “All these diseases are severe and cause shortened life expectancy as few, if any, curative treatments are available”, said Daniel Goldberg, chair of Wolper’s Community Genetics Advisory Board and vice-president of Wolper Jewish Hospital.
The Royal College of Pathologists of Australasia (RCPA), in conjunction with Wolper’s Community Genetics Committee, applied to MSAC for public funding of screening for severe monogenic disorders. Wolper’s successful community genetics screening program was used as the exemplar for how such a program could work.
“No child with Tay-Sachs has been born to parents who have been through Wolper’s community genetics screening program,” said Dr Lesley Andrews, Wolper board member and head of the Hereditary Cancer Clinic at Prince of Wales Hospital.
MSAC’s recommendation covers nine monogenic disorders: Tay-Sachs disease, Canavan disease, familial dysautonomia, mucolipidosis type IV, glycogen storage disease type 1, Fanconi anaemia type C, Gaucher disease type 1, Niemann-Pick disease type A and Bloom syndrome.
It was also recommended it include tests for the variants that cause cystic fibrosis, spinal muscular atrophy and fragile-X syndrome, already approved for funding for the broader community from November 2023.
“This is a very exciting outcome and a huge step towards having this vital testing included on the MBS,” RCPA spokesperson Professor Leslie Burnett said.
“It follows some 30 years of dedicated work in which testing for Tay-Sachs disease and similar conditions has been trialled and evaluated in the Jewish community, and the evidence shows that offering carrier testing for at-risk individuals is a successful and proven health strategy, benefiting both the individuals at risk and the broader community.”
Wolper president Richard Glass said, “Our initial proposal to MSAC was not limited to the Jewish community, and we were very appreciative to have received letters of support from the leaders of many different ethnic groups and interfaith leaders.
“We hope that the success of the application for the Jewish population now represents a template for future applications by other ethnic communities, and we would be very happy to assist with such applications.”
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