This week the Senate voted to establish an Inquiry into Australia’s infected blood scandal, and the circumstances through which Australians acquired bloodborne viruses (BBVs), including HIV, hepatitis B and hepatitis C, through infected blood products in the 1970s, 1980s and 1990s. This Inquiry will be led by the Senate’s Community Affairs References Committee.
You may be wondering about Haemophilia Foundation Australia’s hep C advocacy with government, what will happen now and how you and others can be involved.
Firstly, I would like to reassure you that HFA welcomes the Inquiry and looks forward to participating. Our first priority is to address the needs and welfare of our bleeding disorders community. We know that clarifying these circumstances and having your voices heard means a lot to our community. We will submit our evidence, including new information, and will provide a range of opportunities for you and others to contribute.
We are currently waiting for more information about the Inquiry’s Terms of Reference and deadlines which will be published on the Parliament of Australia website.
What is HFA doing about hep C?
To recap – in Australia many people with bleeding disorders were exposed to hepatitis C through their treatment products before new safety procedures were introduced in the early 1990s.
Unlike other similar countries, Australia still has no dedicated financial support or compensation scheme specifically recognising our community. HFA has called on the government to recognise that the need for support has not gone away and that the time for action is now.
We have already been speaking with government specifically about the traumatic experience of being exposed to HCV, the significant ongoing impact on the lives of affected people with bleeding disorders, and the inadequate response by government to date. We asked for a formal acknowledgement and in 2025 presented government with a proposed financial scheme.
You can read about our work to develop the financial scheme and our advocacy on our website – HFA and hepatitis C.
The potential financial scheme aimed to address the needs described in the 2025 HFA Hepatitis C Snapshot survey and the HFA Getting Older report, which was a comprehensive and detailed needs assessment. HFA prepared our case carefully and revisited costings with the generous support of individuals in the community who provided case studies, looking at 10 different scenarios. This was approved by HFA Council It was based on evidence from our consultation, drawing on real experiences, case studies and research data.
We will now focus on preparing for the new Senate Inquiry.
How can you help?
An important part of the Inquiry’s work will be to understand the impact of bloodborne viruses (HIV, hepatitis B, hepatitis C) on our community members.
We are grateful to the community members who have shared their personal stories about the impact of bloodborne viruses in the past and are now looking for any who are willing to share their experiences for this Inquiry. This can be shared with a pseudonym, if you prefer.
If you would like to share your experiences relating to HIV, hepatitis B or C, please complete the form to register your interest.
Stay up-to-date
Due to the sensitive nature of this topic and how it affects our community members, HFA has chosen to limit social media posts and will primarily communicate our updates via email and the HFA website.
To keep up-to-date with developments, sign up to HFA e-news.
To make sure these communications reach your inbox, we recommend adding news@haemophilia.org.au to your safe senders list. Check the ‘help’ in your email browser to find out more.
Getting support
This situation is unresolved and we recognise that it may bring up concerns, questions and feelings of anger, frustration and distress for our community members.
If this situation affects you, please consider reaching out for support, for example, talking to those close to you or:
• Your usual counsellor
• Your social worker/psychologist/counsellor at your Haemophilia Treatment Centre
• Your GP (who can also give a referral to counselling)
• Lifeline – phone 131114
For questions about your current hepatitis C or liver health, speak to your hepatitis specialist or your GP. If you think you may have been at risk for hepatitis C and would like to have testing, speak to your GP or contact HepLink (national telehealth service).
If you have questions relating to HIV or HIV/HCV coinfection, speak to your HIV or coinfection treating team.
