For more than 20 years Haemophilia Foundation Australia (HFA) has conducted hepatitis C advocacy campaigns for our bleeding disorders community. These campaigns have aimed to address significant impacts on our community: recognition, financial and support needs, treatment product safety and a cure.
After new hepatitis C treatments became available to all Australians in 2016 and most people with bleeding disorders have now been cured of hep C, the landscape has changed.(1)
It has been important to understand the current needs and priorities of our affected community and HFA conducted a snapshot survey in January 2025 to hear from people with bleeding disorders affected by hep C. The results of this survey have helped to guide HFA’s current approach to hep C.
In Australia many people with bleeding disorders acquired hepatitis C virus (HCV) from their plasma-derived clotting factor treatment products or other blood products before 1993. Plasma-derived concentrates were a particularly high risk as each batch was manufactured from the pooled donations of thousands of donors and one HCV infection could infect the entire batch. In 2004 the Australian Red Cross Blood Service estimated that approximately 1350 Australians with bleeding disorders had hepatitis C.(2)
Several safety measures were introduced by 1993 and the risk of bloodborne viruses from plasma-derived clotting factor products in Australia is now considered to be extremely low:
| 1990 | HCV testing of the blood supply commenced |
| 1990 | factor VIII (8) products manufactured using HCV inactivation measures became available |
| 1993 | factor IX (9) products manufactured using HCV inactivation measures became available |
| 2004 | universal access to recombinant clotting factor products (created in a laboratory and virus-free) for Australians with haemophilia. |
In 2020 the HFA Getting older with a bleeding disorder needs assessment found that, although the greater majority of surviving people with bleeding disorders and hepatitis C have now been cured, there are ongoing health, financial and support issues for many.
This includes:
Australian governments contributed to HCV litigation settlement schemes for eligible people who contracted HCV via the blood supply in Australia between 1985 and 1991, before the introduction of reliable screening tests for hepatitis C virus. However, to be eligible, an individual needed to link their source of infection to a single donor with hepatitis C. HFA believes that nearly all people with bleeding disorders were excluded from eligibility as they had many treatments during this period and usually with plasma-derived concentrates and they could not identify a particular treatment batch or a single donor. Apart from a small ex-gratia payment that was made by the ACT government to people with bleeding disorders who acquired hepatitis C through the blood supply, there have been no other government financial recompense schemes for people with bleeding disorders in Australia.(4)
WHAT HAS HFA DONE SO FAR?
The HFA hepatitis C strategy page on our website gives more information about the issues and the work HFA has done over more than 20 years to advocate for affected community members. This page also includes links to our previous community consultation reports.
| 2004 Senate Inquiry |
| HFA presented all of our known hep C evidence to the 2004 Australian Government Senate Inquiry into Hepatitis C and the Blood Supply in Australia. The Inquiry recommended a scheme for case management and financial support for health and community care costs of those who acquired hepatitis C through the blood supply, but it was never carried out.2 |
| Recognition |
| HFA’s Getting Older report recommended an acknowledgement: ‘That the traumatic experience of being exposed to HIV and hepatitis C and the ongoing impact on the life of affected people with bleeding disorders is acknowledged by Australian governments, even if they have been cured of hepatitis C.’ |
| Financial and support needs |
| HFA conducted advocacy campaigns for a no fault (ex gratia) recompense scheme in 2003-04 and 2010-11 on moral grounds. In 2011 HFA began advocating for the Senate Inquiry recommendation that was never carried out: a scheme for case management and financial support for health and community care costs. |
| Treatment product safety & a cure |
| HFA conducted an advocacy campaign for recombinant factor VIII and IX therapy for all Australians (not manufactured from human blood) – achieved 2004. From 2014 HFA advocated for new DAA hep C treatments as a cure – cure was the highest priority in the HFA Double Whammy consultation (2007-9). These treatments became available for all Australians in 2016 |
In January 2025, HFA asked our community with hepatitis C about their current priorities and issues. Results from the HFA hepatitis C snapshot survey confirmed that hepatitis C remains a concern for many of those affected in our community.
76 Australians with bleeding disorders affected by hepatitis C responded to the survey.
50% reported ongoing liver health issues.
The survey asked participants what would help and their priorities.
How important are these outcomes to you?
‘Very important – Work is getting harder to do (work part-time).’
‘Very – in the past I have had to pay for some CT scans. Currently I am bulk billed.’
‘Very. I am still hurting emotionally from my diagnosis despite being treated and of course my liver continues to have issues.’
‘Extensively, due to the great impact it has had on my life and that of my family’s.’
‘Very important, many haemophiliacs cannot move forward in life with proper acknowledgement of what occurred.’
People with bleeding disorders are often stoic and the mental health impact of hepatitis C is often unrecognised.
Although only 7% in the survey identified a need for mental health support, the HFA 2020 PROBE (Patient Reported Outcomes Burdens and Experiences) Australia Study found that older men with haemophilia, who were nearly all affected by hep C, had twice the rate of clinically diagnosed depression and anxiety as those without a bleeding disorder, who did not have hep C.(3) In the Getting Older report, Haemophilia Treatment Centre health professionals saw mental health as an issue for all of those affected by bloodborne viruses.(3) This is consistent with overseas studies, which have found high scores for depression, stress and emotional distress in people with haemophilia affected by hepatitis C.(5)
Going forward it will be important to acknowledge the mental health impact of hepatitis C and provide services and support to all those affected.
The outcomes given the highest priority were (in order of popularity):
The 2025 snapshot survey results have confirmed that it is a priority for HFA to move forward to address the health, support and financial needs of Australians with bleeding disorders affected by hepatitis C.
HFA has prepared our case and revisited costings with the generous support of individuals in the community who provided case studies. A potential scheme has been prepared that aims to address the needs described in the survey and the HFA Getting Older report. This has been approved by HFA Council. While we are not able to share the scheme with you at this point, it has been based on evidence from our consultation, drawing on real experiences, case studies and research data.
In June 2025, we re-started the conversation about the effects hepatitis C has had on the bleeding disorders community and current needs with different departments in the Australian government. We have presented the potential scheme and aim to have further discussions in the coming months.
We are grateful to the community members who have shared their personal stories about the impact of hepatitis C for our advocacy in the past, and may be looking for others in the future who are willing to share their experiences.
We will keep the community updated on developments and any requests like this.
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