HFA Hepatitis C Strategy
HFA hepatitis C strategy
HFA is currently working on a national strategy 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.
Needs assessment
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 has had 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 .
Click here for more details of the HFA hepatitis C needs assessment.
Activities
At the beginning of the needs assessment, HFA recognised that several issues need to be acted on immediately. HFA:
- Developed a hepatitis C section on the HFA web site
- Produced an introductory information booklet on hepatitis C specifically for the bleeding disorders community
- 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
HFA Hepatitis C Strategy
Information from the HFA hepatitis C needs assessment is being 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
- Government submissions for policy change and/or funding for services
What have been the results so far?
- Submission to government on access to hepatitis C retreatment and support before, during and after treatment for people with bleeding disorders
- Brief fact sheets on hepatitis C
- Education sessions on hepatitis C issues for the community and haemophilia health professionals at the Haemophilia Conference 2007
- Series of short articles with personal stories from ‘Double Whammy’ Report in HFA magazine National Haemophilia in 2008
- ‘Double Whammy’ Report distributed widely to the community, health professionals, government and other stakeholders to raise awareness of the issues.
HFA has also sought expert advice on the complex finance and insurance issues facing people with bleeding disorders affected by hepatitis C.
Evaluation
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)
Future plans
HFA is currently working on priority resources and education and seeking further funding for some of these projects:
- Revision of HFA hepatitis C information sheet/fact sheets on priority issues
- Revising the Hepatitis Australia discrimination and disclosure booklets for the bleeding disorders community (permission granted by HA)
- Wellbeing weekend
HFA is also undertaking other strategic work, including on financial issues and advocacy for services, support and education. We will report on the outcome of this work in the HFA National Haemophilia magazine and on this web site.
Partnerships
HFA is working collaboratively with its member Haemophilia Foundations, with the Haemophilia Centres around Australia and with Australian and state/territory Hepatitis Councils to achieve common goals for the bleeding disorders community affected by hepatitis C.