HFA hepatitis C strategy
HFA continues to implement its national hepatitis C strategy. This strategy was developed out of steps to understand the needs of the bleeding disorders community affected by hepatitis C, to develop a plan to meet these needs and put the plan into action.
WHY THE NEED?
In Australia many people with bleeding disorders acquired hepatitis C from their plasma-derived clotting factor treatment products before 1993.
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 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.
Implementation of the strategy has involved ongoing work over many years, including:
||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.
Needs of the person with a bleeding disorder who has hepatitis C, or has had hepatitis C and cleared the virus, can be quite individual and can vary in different parts of Australia. To get a better sense of the range of people’s needs, HFA followed up the survey with a comprehensive needs assessment. This involved discussions with many different people and organisations:
- Haemophilia Foundations around Australia
- Focus groups in several states/territories with people with bleeding disorders affected by hepatitis C and their partners or family
- HFA Hepatitis C Advisory Group: experts nominated from the bleeding disorders community and professionals specialising in bleeding disorders and/or hepatitis C
- Haemophilia and hepatitis C health professionals and community workers
The results 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 through:
- Focus groups in a number of states/territories
- Your Say feedback form/survey
- Consultation with Haemophilia Foundations, Hepatitis Councils and haemophilia and hepatitis health professionals
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
As a result of the needs assessment recommendations, HFA has undertaken a range of activities:
- Developed a hepatitis C section on the HFA web site
- Produced information resources and personal stories specifically for the bleeding disorders community
- Developed the Hepatitis C Wellbeing Weekend education program
- Distributed the results of the needs assessment to community members and health professionals both in full and as newsletter articles
- Worked with community and health professional groups on education, awareness and treatment advocacy for the Australian bleeding disorder community, and on education for health professionals
- Sought expert advice on the complex finance and insurance issues facing people with bleeding disorders affected by hepatitis C
- Submissions and representation to Australian governments on financial issues and advocacy for services, support and education
- Submissions and representation to the Australian government on access to hepatitis C treatment
Outcomes of this work are reported in the HFA National Haemophilia magazine and on this web site.
HFA works collaboratively with its member Haemophilia Foundations, with the Haemophilia Centres around Australia and with Australian and state/territory hepatitis organisations to achieve common goals for the bleeding disorders community affected by hepatitis C.
Date last reviewed: 30 October 2018