Gavin Finkelstein is President, Haemophilia Foundation Australia
If any of us thought there would be time to slow down a bit after the WFH 2014 World Congress in Melbourne, we were wrong! Perhaps generated by the energy created by the Congress, HFA is working through a very full agenda of work at present, some of which I have outlined below.
Like several of our State/Territory Haemophilia member Foundations HFA has been working on government funding submissions and agreements. HFA has established an agreement with the Department of Health on agreed goals. Some of this funding is for education and communication through our website and National Haemophilia, some for our policy research and submissions and some for the work we do to support excellence in haemophilia nursing, social work and physiotherapy which is important for comprehensive care services at haemophilia centres.
HFA is also looking at ways we can contribute to a better understanding of the health outcomes of the care and treatment provided to our community. The Australian Bleeding Disorders Registry (ABDR) and MyABDR are important cogs in the wheels for helping to generate the evidence needed to justify the effectiveness of high expenditure on treatment products.
We encourage your participation in MyABDR.
We need to demonstrate what we know – that appropriate treatment and care, clotting factor as prophylaxis or on demand plus other interventions such as physiotherapy, effective pain management and other services help us live our lives as independently and successfully as possible – less time off work and school, better joint health etc – but today it is not enough just to say this, evidence is needed. HFA encourages local research on this, so everyone can access the most suitable treatment to enable them live productive lives. MyABDR is an important tool to help people with bleeding disorders and their doctors and other treating health professionals understand better the impact of managing bleeds and treatment. It also generates aggregated data to support best practice. We will also be pursuing ways that people can access longer acting clotting factors for their treatment which we believe will also be a critical part of best practice.
Another treatment issue of great concern is for people living with long term hepatitis C. We have made submissions to governments about the financial difficulties faced by individuals and their families due to the complications of living with hepatitis C and a bleeding disorder. We are increasingly concerned about our members who tell us they have delayed hepatitis C treatment or that earlier treatments were not successful. Some people have been waiting for new drugs with fewer side effects and higher response rates, with shorter treatment periods in some cases. We were very excited when two new drugs were registered for use in Australia recently, but very disappointed that a drug that might be successful in our community will not be funded by the government. Some of our members with advancing liver disease are worried that time is running out for them to find a cure for their hepatitis C. HFA is getting further specialist advice about the potential of these drugs for some people in our community and has sought the assistance of the Australian Haemophilia Centre Director’s Organisation (AHCDO) for advice and firm data to support our advocacy.
Important governance work with our State/Territory member Foundations has led to several proposed amendments to the HFA Constitution for consideration at the upcoming Annual General Meeting in October. These changes are being considered because we want the HFA Council to be more agile and inclusive, and for decision-making to be more timely and responsive to the needs of our members.
Our fundraising staff are working hard to seek funding from philanthropic trusts for funding for core activities of HFA and a range of projects including family camps for children and adults, peer support activities, and other special projects to support and educate youth, women and girls, and people who are ageing.
I look forward to keeping in touch on these important issues.
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