From the President

GAVIN FINKELSTEIN

Gavin Finkelstein is President, Haemophilia Foundation Australia

We are nearing the end of 2016, and our reporting to member Foundations at the Annual General Meeting in late October included a review of our work over the past year. Our published annual report will be available on the HFA website soon. I am pleased that the work on our new education resource for parents of a child newly diagnosed with haemophilia is now well underway and is to be published in the first part of 2017. Our Female Factors project is also progressing well with ongoing work being undertaken to develop resources for women and girls. 

TREATMENT AND CARE

I recently met with the new CEO General Manager of the National Blood Authority (NBA), Mr John Cahill, and was able to reiterate comments to him in my earlier welcome letter to him. I confirmed that the community is keen to see a pathway developed for access to the extended half life clotting factors already registered for use in Australia, and for other emerging therapies when they are registered. HFA has many examples of the benefits of some of these treatments for the individuals who have participated in clinical trials. Reduced or no bleeding, longer periods between infusions, tailoring dose to suit the bleeding patterns of individuals, better adherence to prophylaxis, as well as a range of other factors leading to improved health and quality of life, strongly support access. 

I also acknowledged to Mr Cahill that we are grateful for governments’ commitment to treatment and care. I noted the support from the NBA for the Australian Bleeding Disorders Registry (ABDR) and MyABDR, and our work with Australian Haemophilia Centre Director’s Organisation (AHCDO) and Haemophilia Treatment Centre health professionals, which enables patients to record their bleeds and work with their clinicians towards the best treatment plan for them on an individual basis. I assured him that we are very conscious of the high cost of all our treatment products and of our commitment to contribute to ways of evaluating outcomes for individuals and measuring the benefit to them so that governments have the evidence they need to justify the expenditure. 

RESEARCH

It is important for us to contribute to the knowledge base that is developing about the treatment of bleeding disorders. There are important opportunities for us to add our voice to some of the research that is going on locally and internationally and I remind you that we upload research projects on our website that provide a chance for us as health consumers to participate in research – you may wish to participate.

HEPATITIS C

On another note, I implore people who have not yet had hepatitis C treatment to make an appointment with their health professionals for assessment. I have been fortunate to have cleared the virus following recent treatment with one of the new products and we are hearing many reports of others with bleeding disorders clearing the virus. You will see elsewhere in National Haemophilia that HFA is taking steps to ensure everyone has relevant information so they can take up treatment if they need it.