HGSA Advocacy for Increased Access to Genetic Counsellors 

A priority of the HGSA for several years has been the need to increase access to Genetic Counsellors. In 2022 a submission was made to the Medical Review Advisory Committee seeking an MBS item number. 

In 2024 the HGSA commissioned an economic analysis of the value of genetic counselling in the Australian healthcare system. We are proud to share this analysis with you: Economic Analysis

The HGSA has lodged a pre-budget submission to the Federal Department of Treasury: Pre-budget submission

We strongly encourage you to speak with your local Member of Parliament to encourage them to have this issue as a key priority for the next budget and election. 

 

Support for Medicare Item Numbers for Genetic Counsellors

The professional organisations and colleges below have all provided support for the implementation of Medicare Item Numbers for Genetic Counsellors in Australia. 

 

     
     
Australian Genomics  Australasian Association of Clinical Geneticists   Australasian Society of Genetic Counsellors 
     
   
 Australasian Society of Diagnostic Genomics Allied Health Professions Australia   Breast Cancer Network Australia
     
Breast Surgeons of Australia and New Zealand   Centre for Community-Driven Research Cystic Fibrosis Australia 
     
 
 Centre for Genetics Education, NSW Health Fragile X Association of Australia  Genetic Alliance Australia 
     
 Genetic Support Network Victoria Industry Genomics Network Alliance  Lung Foundation
University of New South Wales
     
 
 Melbourne Genomics Health Alliance  National Alliance of Self Regulating Health Professions  Mito-Foundation 
     

 The Royal Australian and New Zealand College of Obstetrics and Gynaecology

 The Royal Collage of Pathologists of Australasia  Red Nose
     
Rare Voices Australia SCN2A Asia-Pacific  Inherited Cancers Australia
     
 Syndromes Without A Name Through the Unexpected  Tuberous Sclerosis Australia 
     
 
 Usher Kids Australia Guard Collaborative Australia    

Genetic counselling as an essential component of genomic medicine’s safe and effective implementation. We strongly support HGSA’s call for an MBS item number for genetic counselling.

- Guard collaborative

“They organised genetic testing to confirm the diagnosis and explained what would happen and how long it would take. All this helped put our minds at ease and set us
off on the right track at the start of our journey.”

– Parent of a child with a rare genetic condition

Greater access to genetic counselling services outside of hospital settings is essential. 

Expanding these services would ensure that individuals and families receive consistent, accurate information and timely support, regardless of their location or medical pathway.

Genetic counselling is an essential service that provides families with clarity, guidance, and confidence in the face of life-changing diagnoses. Expanding access and improving delivery models would empower more families to make informed decisions and feel supported throughout this daunting process.

- Danielle and Leon Green

“My child also showed up with a rare duplication... but as our paediatrician put in the test, no follow up by genetics was available to us then, and I was not offered genetic counselling on
my own results... So I have had no idea how to prevent, treat or monitor any complications that may be present or arise from these duplications, nor have I been given any information on them. The MBS item being added would certainly be beneficial when thinking of my family!”

– Parent of a child with a rare genetic condition

“Having genetic testing and understanding the impacts of results are two very different things, so having skilled clinicians to help guide decisions is essential.”

“There is on average a two year wait for these services around the country, although it’s even longer in some areas. We believe the model proposed by the HGSA in their submission will help
provide more equitable access to care throughout Australia.”

“Increased access to genetic counselling services will only bring benefits to the whole community not just the people we support who are living with a genetic condition. Genetic counsellors provide patients with knowledge and support that can impact their entire lives.”

- Children's Tumour Foundation

“We have had three appointments, and the genetic counsellor was great for where to find details and help on syndromes and also for getting our extended family assistance in diagnosis as most GPs and specialists don't have enough knowledge of what to ask, test or where to refer for us on to.”

– Parent of a child with a rare genetic condition

Rare diseases are estimated to affect two million Australians, and 80 per cent of rare diseases are of genetic origin. Therefore, advances in genomic medicine have been a game-changer for the detection and treatment of rare diseases. Many of the key priorities, actions and implementation steps in the Action Plan highlight the importance of genomic medicine and, in particular, the need for genetic counsellors

- Rare Voices Australia