Public funding for reproductive carrier screening recommended to Health Minister

October 26th, 2020

The Medical Services Advisory Committee has put a recommendation to the Federal Health Minister, Greg Hunt, that reproductive genetic carrier screening for Fragile X syndrome, Cystic Fibrosis and Spinal Muscular Atrophy be listed on the Medicare Benefits Schedule.

1 in 20 people are carriers for the gene change that causes Fragile X syndrome, Cystic Fibrosis or Spinal Muscular Atrophy, but most are unaware that they are carriers.  Currently genetic carrier screening for these conditions will cost an individual up to $400, which is a barrier to many.

If the recommendation is approved by the Health Minister, this would mean that all women and couples have the opportunity to learn, at no personal cost,  of their chances of having a child with these conditions.

The recommendation to the Health Minister follows an application by the Royal College of Pathologists of Australasia (RCPA) to the Medical Services Advisory Committee.   Fragile X Association of Australia, SMA Australia and Cystic Fibrosis Community Care, together with Victorian Clinical Genetics Services, have been working as a group for many years to raise awareness of the importance of accessible reproductive carrier screening, and were in full support of the RCPA application.

A joint media release was issued by SMA Australia, Cystic Fibrosis CommunityCare and Fragile X Association of Australia to welcome the recommendation.

Fragile X Association of Australia, SMA Australia and Cystic Fibrosis Community Care have now written to Minister Hunt to thank him for his strong interest in carrier screening, through Mackenzie’s Mission and other initiatives, and to indicate that the three bodies are hopeful of a positive response to the recommendation.

Related::
Statement by Victoria Clinical Genetics Services: https://www.vcgs.org.au/news/promising-step-towards-publically-funded-reproductive-genetic-carrier-screening-commonly

Joint media release from SMA Australia, Cystic Fibrosis CommunityCare and Fragile X Association of Australia
https://smaaustralia.org.au/wp-content/uploads/JOINT-MEDIA-RELEASE-CF-FX-SMA-2.pdf

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