Bloodborne Virus Senate Inquiry 2026 personal story
Participant information
Haemophilia Foundation Australia (HFA) is preparing personal stories for its submission to the 2026 Senate Inquiry into Contaminated Blood and Blood Products. HFA advocacy relying on these personal stories may continue after the Senate Inquiry.
What is the purpose of the personal stories?
The personal stories are to provide evidence of the experience of Australians with bleeding disorders and their partners, family and carers in relation to blood products infected with hepatitis B, hepatitis C and HIV. HFA will be advocating for a formal government acknowledgement of this experience, an apology and recompense – recognition of the lifetime impact and need for support into the future in the form of a financial scheme.
You are invited to share your experience and perspective; this is your own experience and does not have to align with HFA, other organisation or other individuals’ experiences or perspectives.
HFA will review the stories alongside other evidence and may draw on the stories to provide points, quotes and short case studies in the HFA submission.
HFA can also support you to submit a more detailed version of your personal story directly to the Inquiry, if you wish.
What could be discussed?
- Impact of bloodborne viruses on health and wellbeing, daily life, relationships, work, study
- Impact of blood product safety on attitude to treatment
- Telling others, discrimination
- Attitudes to health care system and government
What benefits are there for you?
Your participation may help the Inquiry Committee to better understand the bloodborne virus experience of affected people with bleeding disorders and their families/significant others.
What else could be involved for you?
Telling your story bring up a mix of strong emotions for you.
This may include the difficulty of managing uncertainty – hoping for better outcomes at last, but aware that none of us can know what the outcomes of this Inquiry will be. Telling your story may also bring up some difficult things from a community perspective.
If this situation affects you in any way, this is an important time to reach out for support, for example, talking to those close to you or other affected people with bleeding disorders and seeking professional help from:
- 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
The discussion may make you realise you need more information about your health or particular services.
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.
How will your privacy be protected?
Interview recordings and drafts of stories, along with the identity of participants, will be kept in confidential, secure and password protected storage and only authorised staff/consultants working on the HFA submission will have access. Participants can choose a pseudonym for publication and can choose whether they wish to share their name or other identifying information with the Inquiry Committee and/or for publication.
What if you change your mind?
You can stop an interview and/or withdraw your story from the HFA submission at any time before it is finalised for submission. If you want to stop and take some time before you continue, let HFA or the HFA consultant know and the interview or story writing can be put on hold for the time that you need.
You can skip any question, choose not to discuss particular experiences or ask for something you have said not to be used.
What to do if you have any concerns
If you have any concerns about the way the personal story collection is being conducted, please contact Natashia Coco, HFA Executive Director – phone (03) 9885 7800 or 0410 419914 or email ncoco@haemophilia.org.au
If you have any questions about the personal stories or the submission,
please contact Suzanne O’Callaghan, HFA Policy Research and Education Manager, socallaghan@haemophilia.org.au or phone (03) 9885 7800.