Thursday, 27 August 2026

 Sarah MANSFIELD (Western Victoria) (22:00): (2748) My adjournment matter is for the Minister for Health, and the action I am seeking is for her to urgently reinstate funding for Haemophilia Foundation Victoria. HFV is a unique service that has supported Victorians with bleeding disorders since 1954. Thirty years ago Victoria was the first government to provide funding support to an organisation like this, doing so as part of the response to bloodborne viruses because of the historical impact of contaminated blood products on the bleeding disorders community. Bleeding disorders are chronic, often complex conditions even when they are able to be managed well. They can be hereditary or spontaneous and be diagnosed at birth or much later in life. The balance between blood flowing and clotting is delicate and critical, and this is disrupted in bleeding disorders like haemophilia and Von Willebrand disease. What would be a minor cut, bump or fall, or something like surgery or childbirth, can become catastrophic for someone with a bleeding disorder. It is not only acute bleeding that is a risk. Chronic minor bleeding can cause problems like arthritis in joints, which is increasingly being found in women who are carriers of haemophilia genes. It can be particularly overwhelming for families of children diagnosed with bleeding disorders.

Advances in treatment mean that these conditions are much more manageable than they were in the past, but the availability of treatments is not enough. People with bleeding disorders need to actually use the treatment and develop skills in navigating life with a bleeding disorder, and families need connection and support. That is where HFV comes in. They currently provide invaluable support to 1647 people. They do everything from running youth programs and education to peer support with learning to inject critical therapies. They help people to connect with one another and to connect new people who have been diagnosed to help them navigate similar challenges and fears and empower people with bleeding disorders to navigate their chronic condition and participate fully in all aspects of life.

Without warning, in the recent budget the Victorian government decided to cease funding for HFV, with current funding expiring on 1 September this year. While it was partly because the bloodborne viruses umbrella is no longer appropriate, there was no alternative funding pathway to replace it. HFV found out via a brief email. This is despite 30 years of dedicated service, meeting every funding and performance commitment and a record of delivering better outcomes for people living with bleeding disorders, including earlier access to treatment, better management and prevention of complications and hospitalisations, and they do all of this for a mere $244,000 per year. This has been devastating for members of the community living with bleeding disorders who rely on HFV. Without funding, this vital service will cease to exist, and there is nowhere else for people with bleeding disorders to go. Minister, I urge you to restore funding for the Haemophilia Foundation Victoria so they can continue to provide this critical support for people with bleeding disorders and their families.