HFA hepatitis C strategy
HFA’s work to understand the needs of the bleeding disorders community affected by hepatitis C and to take steps to meet these needs is ongoing.
WHY THE NEED?
In Australia many people with bleeding disorders acquired hepatitis C from their plasma-derived clotting factor treatment products before 1993. In 2004 the Australian Red Cross Blood Service estimated that approximately 1350 Australians with bleeding disorders had been exposed to hepatitis C through blood products.
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:
The HFA 2020 Getting Older needs assessment found that, although the greater majority of surviving people with bleeding disorders who had acquired hepatitis C have now been cured, there are ongoing health, financial and support issues for many.
- 1990 - HCV testing of the blood supply commenced
- 1990 – factor VIII products manufactured using HCV inactivation measures became available
- 1993 – factor IX products manufactured using HCV inactivation measures became available
- 2004 - universal access to recombinant clotting factor products (synthetic and virus-free) for Australians with haemophilia.
Although the 2004 Senate Inquiry into Hepatitis C and the Blood Supply recommended case management and financial support for health and community care costs of those who acquired hepatitis C through the blood supply, a formal program was never implemented. Australian governments contributed to Hepatitis C Virus (HCV) litigation settlement schemes for eligible people who contracted HCV via the blood supply in Australia between 1985 and 1991, prior to the introduction of reliable screening tests for hepatitis C virus. However, eligibility for the scheme involved being able to link the individual’s 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 clotting factor concentrates manufactured from the pooled plasma from thousands of donations 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.
- Need for ongoing monitoring for people with cirrhosis to check for complications such as liver cancer
- Careful medical liaison between hepatitis specialists and Haemophilia Treatment Centres required for those with advanced liver disease
- Some people with mild bleeding disorders and women who carry the gene may not be aware that they were at risk for hepatitis C and have not been tested or treated for hepatitis C
- Being exposed to hepatitis C, and the continuing impact on their life, was a traumatic experience for many people with bleeding disorders. This needs to be acknowledged, even if they have been cured
- Living with a bleeding disorder and hepatitis C has had a cumulative impact on increasing health care costs and reducing income over a lifetime, making affected people increasingly vulnerable in their senior years
- Case management is required to ensure that their physical and psychosocial health needs are being met and that advocacy on behalf of individuals takes place when required
- Financial assistance is also needed for health and community care costs not covered through existing services.
Implementation of the strategy has involved ongoing work over many years, including:
||HFA consulted with the bleeding disorders community and expert health professionals about ongoing issues with hepatitis C and published the findings in the HFA Getting Older with a bleeding disorder report in May 2020. HFA is now working on a strategy to implement the report recommendations.
||HFA commitment to eliminating hepatitis C in the bleeding disorders community as part of the global campaign to eliminate hepatitis C by 2030. This has involved work with Haemophilia Treatment Centres (HTCs) and hepatitis specialists to support overcoming barriers to treatment, along with education to GPs to reach those with mild conditions and those who are disconnected from HTCs
||Ongoing hepatitis C treatment health promotion campaign to bleeding disorders community, including education resources
||Community consultation on hep C treatment.
Submissions to the Australian Government/PBAC on access to new DAA hepatitis C treatments
||HFA witness statements and submission to Australian Government Inquiry into Hepatitis C in Australia
||Community survey on hep C experience as evidence for Government Inquiry
||Feedback on draft National Hepatitis C and HIV strategies
||Submissions to the Australian Government/PBAC on access to triple therapy hepatitis C treatments
||Further community consultation relating to financial issues.
Meetings and correspondence with Australian governments on no-fault financial assistance scheme for people with bleeding disorders and hepatitis C and issues relating to out-of-pocket health care costs.
||Feedback on draft National Hepatitis C and HIV strategies
||Information resources, personal stories and education workshops developed specifically for Australians with bleeding disorders and hepatitis C
||Needs assessment of people with bleeding disorders and hepatitis C and evaluation: Double Whammy and Getting it Right reports
||Submission to Senate Inquiry into Hepatitis C and the Blood Supply
||Member hepatitis C survey as evidence for Senate Inquiry into Hepatitis C and the Blood Supply
||HFA national campaign for universal access to recombinant clotting factor treatments (synthetic and virus-free)
||Regular sessions on hepatitis C at national haemophilia conferences
||Regular information updates about hepatitis C published in Haemophilia Foundation newsletters
ELIMINATING HEPATITIS C IN THE BLEEDING DISORDERS COMMUNITY
In the HFA hepatitis C needs assessment the main priority for people with bleeding disorders and hepatitis C was to cure their hepatitis C.
Revolutionary new hepatitis C treatments with very high cure rates, few if any side-effects and shorter treatment courses came to market internationally in 2014. HFA joined the national campaign to have universal access to these treatments through the Pharmaceutical Benefits Scheme (PBS), with a specific goal of eliminating hepatitis C in the Australian bleeding disorders community. The first of the new treatments were listed on the PBS in March 2016, with a range of treatments now available. Haemophilia Treatment Centres have reported to HFA is that nearly all of their patients with bleeding disorders and hepatitis C now been treated and cured. HFA is now concentrating on work to ensure all people with bleeding disorders and hepatitis C have the opportunity for hepatitis C treatment, particularly:
- Those with barriers preventing them from accessing treatment
- Those with mild haemophilia or von Willebrand disease or rare clotting factor deficiencies, including women, who may have had few clotting factor treatments before 1993 and be unaware of their hepatitis C risk or status.
To raise awareness of hepatitis C in people with bleeding disorders among general practitioners, who may see both of the above groups in their practice, HFA collaborated with the Australian Haemophilia Centre Directors' Organisation and hepatitis experts to develop:
People with bleeding disorders and hep C: a fact sheet for general practitioners (Oct 2017)
HFA continues to promote this fact sheet as many people with mild conditions do not attend a Haemophilia Treatment Centre regularly, if at all, and may not have been reviewed or tested for hepatitis C virus.
The groundwork for understanding the situation for Australians with bleeding disorders and hepatitis C was laid with the HFA hepatitis C member survey in 2003. Results from this survey were used as evidence for the Senate Inquiry into Hepatitis C and the Blood Supply in 2004. A summary of the survey results was published in the HFA Double Whammy Report.
HFA conducted a national needs assessment on the needs of people with bleeding disorders and hepatitis C in 2006-2009.
The results of the first stage of the HFA hepatitis C needs assessment were released in a report titled:
“A double whammy”: living with a bleeding disorder and hepatitis C - [PDF, 718KB]
Click here for more details of the HFA hepatitis C needs assessment.
In the first half of 2008 HFA asked the bleeding disorders community and health professionals for feedback on the hepatitis C work HFA had completed by that stage. This was published in the Getting it Right report in 2009.
Summary of the evaluation results
Getting it right: Hepatitis C needs assessment evaluation and implementation report - [PDF, 259KB]
HFA HEPATITIS C STRATEGY
Information from the HFA hepatitis C needs assessment was used to develop HFA’s strategic response to hepatitis C. This includes:
- Further education and information for the community and health care professionals
- Recommendations and advocacy about support, access to services
- Representation to government on a no-fault financial assistance scheme
- Government submissions for policy change and/or funding for services
Outcomes of this work have been reported in the HFA National Haemophilia magazine and on this web site.
HFA works collaboratively with its member Haemophilia Foundations, with the Haemophilia Treatment Centres around Australia and with national and state/territory hepatitis organisations to achieve common goals for the bleeding disorders community affected by hepatitis C.
Date last reviewed: 7 August 2020