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Our Advocacy Work

Our vision is for everyone with a bleeding disorder in Australia to live an active, independent and fulfilling life. This requires access to best practice treatment and care and services.

Advocacy is an important part of HFA’s work, and we keep a watching brief on new treatment products in development.  We have entered an era of innovation in therapy options for people with bleeding disorders, with the potential to deliver significant health outcomes and improve quality of life and productivity.

It is not our role to recommend treatment products – this is a decision for individuals to make in consultation with their treating doctors, but it is important that we make sure everyone in our community has access to the most appropriate treatment and care to meet their needs. This involves consulting with our community about their healthcare requirements to help us make recommendations for improvement. We are excited by the new treatment products already available and others in the pipeline.  They offer new opportunities for people with haemophilia, who can expect less or no bleeding at all and a radical improvement in their quality of life and ability to participate in the community. Some of these new technologies include treatment products that mimic traditional clotting factor replacement therapy and gene therapy that for some people will represent a cure from their bleeding disorder. HFA will continue to maintain a watching brief and advocate for these new treatments to be funded for Australians with bleeding disorders when they offer better health outcomes.

We also work with government and other stakeholders to strengthen the framework for care and treatment in Australia. This often involves preparing submissions to government funding and approval processes for new drugs and novel medical technologies, providing information and advice from the community’s point of view about gaps in health services and recommendations to improve services and care. A valuable way to demonstrate this is to share examples of experiences of people living with a bleeding disorder and their families to show how important a new treatment or service would be to improve their health.  With more new therapies for bleeding disorders on the horizon and gene therapy around the corner, it is an important that there are effective ways to evaluate their benefit to our community and the governments who pay for them. The patient voice is critical to this and HFA’s advocacy program is designed to reflect the changing needs and requirements of our community.  Please contact HFA staff on hfaust@haemophilia.org.au if you wish to share your experience.

Date last reviewed: 7 April 2021

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